A heavy heart September 24, 2015
Hi all. Before I write the most depressing thing you will read all day, let me offer a bit of thanks. Dad's birthday (September 13) was a huge success! So many people (about 45-50 over the course of the day) stopped by to share old and make new memories with Dad. He enjoyed seeing his family and friends and wanted me to tell everyone who took the time to come by and bring hugs, cards, and gifts, thank you. At this point, it is the time spent with family that is most precious to him and it was such a joy for him to be surrounded with so many of the people he loves. Thank you again from Dad, and thank you so much from Mom, Colton, and me too. We are all about making what time we have left with him really count. Which brings me to the update that I have dreaded writing for the last 22 months.
There is nothing left that can be done for my sweet Daddy.
The biopsy showed his liver is just too far gone for any life-extending treatments to be an option. He no longer has enough healthy tissue left to effectively do the job a liver needs to do and, as such, his liver is failing. At this time, the only medical goal is to keep Dad as comfortable as possible. This included implanting a shunt to drain the fluid in his abdomen at home. Dad underwent this procedure on Tuesday and has recovered well. This procedure marked the last of many at M.D. Anderson during the 21 months he received treatment there. It was an odd and extremely emotional visit as Dad left what, in a lot of ways, has been a second home to him for so long. It's hard to imagine treatment no longer being a part of our lives. It's also hard to imagine never seeing Dr. Shureiqi, the man who kept Dad as healthy as possible for so long, again. It's a surreal situation and no one is used to it yet.
So where do we go from here?
Next Tuesday we are interviewing home hospice providers. Dad has "limited time" left. Dr. Shureiqi refused to offer a more exact number of days/weeks as he doesn't want Dad to spend what time he does have left counting down. We can appreciate Dr. Shureiqi looking out for his best interests one last time. Dad will now be in the care of whatever hospice provider we choose and will have his pain managed by their doctors. He will remain at home where he can be in the company of family and friends which is what he has always wanted. I have said this before but it certainly bears repeating now; if you would like to see Dad, this is the time. We do ask that you call or text first as he tires easily and needs to rest. We know you all understand if he has to cut a visit short, but we want to thank you in advance for being patient. Most days he seems ok. He is uncomfortable and tired a lot of the time, but his mind is sound and after talking to him for a bit you seem to forget he is sick at all. It's a little hard to process this disconnect but we're doing the best we can. We are all hanging in there since it's all we can do and are making the most of our time with him. We laugh a lot and we cry a lot and we try our best to work through the emotional extremes we're feeling. It is rough but we are grateful to still have him at all. We were told that barring any infection or complication with the shunt, Dad will just get progressively sleepier and become more and more difficult to rouse. Ultimately, he won't wake at all. It doesn't seem like very dramatic or particularly painful ending and for that we are grateful.
From here, there isn't much left to say. I do want to apologize for taking so long to update y'all. This has been the most difficult thing I have ever experienced and I just needed some time to try and wrap my brain around what is happening. Once the time comes, I will post service times and locations here. Until then, make sure to say everything you need to say to the people who need to hear it because you just never know. We love you all. Until next time.
There is nothing left that can be done for my sweet Daddy.
The biopsy showed his liver is just too far gone for any life-extending treatments to be an option. He no longer has enough healthy tissue left to effectively do the job a liver needs to do and, as such, his liver is failing. At this time, the only medical goal is to keep Dad as comfortable as possible. This included implanting a shunt to drain the fluid in his abdomen at home. Dad underwent this procedure on Tuesday and has recovered well. This procedure marked the last of many at M.D. Anderson during the 21 months he received treatment there. It was an odd and extremely emotional visit as Dad left what, in a lot of ways, has been a second home to him for so long. It's hard to imagine treatment no longer being a part of our lives. It's also hard to imagine never seeing Dr. Shureiqi, the man who kept Dad as healthy as possible for so long, again. It's a surreal situation and no one is used to it yet.
So where do we go from here?
Next Tuesday we are interviewing home hospice providers. Dad has "limited time" left. Dr. Shureiqi refused to offer a more exact number of days/weeks as he doesn't want Dad to spend what time he does have left counting down. We can appreciate Dr. Shureiqi looking out for his best interests one last time. Dad will now be in the care of whatever hospice provider we choose and will have his pain managed by their doctors. He will remain at home where he can be in the company of family and friends which is what he has always wanted. I have said this before but it certainly bears repeating now; if you would like to see Dad, this is the time. We do ask that you call or text first as he tires easily and needs to rest. We know you all understand if he has to cut a visit short, but we want to thank you in advance for being patient. Most days he seems ok. He is uncomfortable and tired a lot of the time, but his mind is sound and after talking to him for a bit you seem to forget he is sick at all. It's a little hard to process this disconnect but we're doing the best we can. We are all hanging in there since it's all we can do and are making the most of our time with him. We laugh a lot and we cry a lot and we try our best to work through the emotional extremes we're feeling. It is rough but we are grateful to still have him at all. We were told that barring any infection or complication with the shunt, Dad will just get progressively sleepier and become more and more difficult to rouse. Ultimately, he won't wake at all. It doesn't seem like very dramatic or particularly painful ending and for that we are grateful.
From here, there isn't much left to say. I do want to apologize for taking so long to update y'all. This has been the most difficult thing I have ever experienced and I just needed some time to try and wrap my brain around what is happening. Once the time comes, I will post service times and locations here. Until then, make sure to say everything you need to say to the people who need to hear it because you just never know. We love you all. Until next time.
Home 'til monday September 10, 2015
Hey family. Dad is being discharged from the hospital tonight. He will be home until Monday morning, when he will need to report back to MD Anderson for a liver biopsy. Dr. Miller (the liver specialist) will be going in through Dad's neck to complete the biopsy. He wants to see exactly what the liver looks like before making his final determination on what, if anything, can be done to help Dad out a little longer. He will most likely stay in Houston for the duration of next week as he has doctor's appointments on Thursday and Friday as well. So if any of you want to see his pretty face, now's your chance! There's a small possibility of him returning to the hospital tomorrow to do some prep for his procedure on Monday, but he will for sure be home on Saturday and Sunday. Even though he's home and up for visitors, just bear in mind that he still gets a little tired sometimes. However, he is feeling much better after having all of that fluid drained. There are a few medication changes, namely he will be switched from a blood thinner pill back to the blood thinner shots he loves so much. Just kidding, he hates them. But he's taking it all in stride like the super amazing guy he is. We will post here if anything changes. Oh! and don't forget that Sunday is his birthday! So send some happy wishes his way. We hope you all have a great weekend!
Weeks to months September 9, 2015
Hey all. I know I spoke to many of you personally, but if I did not, bad news.
Dr. Shureiqi came to visit Dad for about 45 minutes today. Basically, Dad's liver is failing (which we knew) and if Dr. Miller (the liver specialist) determines that nothing can be done to help his liver, then he has a few weeks to a couple of months left to live. I'll let that process for a moment.
There is a lot of additional information to share and honestly, I don't have it in me to be clever so I'm just going to list it in bullet form below. I'm apologizing in advance for typos and gaps in information. I will fill in any missing details in the next day or two when this fog lifts a little. Here we go:
Dad is obviously taking all of this pretty hard. He's been pretty upset, and rightly so, all day off and on. He does want to see visitors; however, he had his nose swabbed and tested positive for coronavirus (which causes everything from the common cold to SARS) so he currently in isolation. The results didn't come back until after I had been with him all day so you guys are just now hearing about it. I'll keep you posted on the status of that here. We suspect it could be a false positive since he has no symptoms.
I will try to review and add to the post a little more tomorrow. My brain and heart hurt tonight and it's difficult to try to remember everything at once. If anyone has any questions about Dad's condition, please feel free to call me at 409-998-1202 or email at [email protected]. If you just want to talk to Dad to catch up and check on him, please feel free to call or text him.
One last thing. Dad's birthday is this Sunday. If you all want to email me birthday wishes I will get them printed on cards and deliver them to Dad. Again, my email is [email protected]. I want to say thank you to all of you for your kind words today and for all being so patient with me as I stumbled through phone calls. We'll keep you guys posted.
Dr. Shureiqi came to visit Dad for about 45 minutes today. Basically, Dad's liver is failing (which we knew) and if Dr. Miller (the liver specialist) determines that nothing can be done to help his liver, then he has a few weeks to a couple of months left to live. I'll let that process for a moment.
There is a lot of additional information to share and honestly, I don't have it in me to be clever so I'm just going to list it in bullet form below. I'm apologizing in advance for typos and gaps in information. I will fill in any missing details in the next day or two when this fog lifts a little. Here we go:
- Dad went to a regularly scheduled appointment with his neurologist yesterday but was having major issues with abdominal swelling due to fluid. So Mom went to the GI clinic to leave message for Dr. Shureiqi about how to proceed. He advised Dad go straight to ER to have fluid drained instead of waiting for the procedure to be scheduled. Dad was admitted to hospital last night.
- Dad was unable to have a paracentisis because his blood was not coagulating. He had to receive an FFP (fresh/frozen plasma) transfusion so that he would be stable enough to have the fluid drained. He had the FFP at about 1:00 am this morning.
- The FFP alone did not bring his numbers (whatever marker they use to measure blood coagulation) up enough, so they administered a Vitamin K through his IV. They put him on lasix, Aldactone (a protein) and one other pretty powerful medication to help relieve the swelling in his legs. They are diuretics and did seem to help a bit.
- He was able to have the paracentisis around 3:00 the afternoon. They removed 4.6 liters of fluid from his abdomen. That was double what they removed last time. There is still much more, but they can't safely remove all of it at once.
- They have orders in place to move him to the gastroenterology floor (19) so they can better monitor his liver function.
- His liver is failing. Dr. Miller the liver specialist, has been consulted. If he determines that there is nothing else to be done, then Dad has at best a few weeks to a couple of months left. If he decides there is a way to stretch a little more time out of Dad's liver, then we will pursue that.
- Dad can no longer receive chemo. At this point it could cause him to internally hemorrhage which is immediately life threatening. This does mean that the tumors will resume their growth. Possibly aggressively so.
- Dad is not a candidate for any kind of experimental drug trial or treatment because he is suffering from major organ failure. No trial will take him.
- Dad will still have to deal with the fluid. They do not want to insert a catheter as that can lead to infection. We don't know if there are any other plans for dealing with it just yet.
- When asked what liver failure will look like, Dr. Shureiqi basically said he will become sleepier and sleepier until we are just unable to rouse him. He did also mention the possibility of a coma. This is barring any other issues cropping up.
- He will be given medications to ensure that he is comfortable and able to be with family. Whether that is at M.D. Anderson, home, or a hospice situation, we do not yet know. This is a day to day situation.
Dad is obviously taking all of this pretty hard. He's been pretty upset, and rightly so, all day off and on. He does want to see visitors; however, he had his nose swabbed and tested positive for coronavirus (which causes everything from the common cold to SARS) so he currently in isolation. The results didn't come back until after I had been with him all day so you guys are just now hearing about it. I'll keep you posted on the status of that here. We suspect it could be a false positive since he has no symptoms.
I will try to review and add to the post a little more tomorrow. My brain and heart hurt tonight and it's difficult to try to remember everything at once. If anyone has any questions about Dad's condition, please feel free to call me at 409-998-1202 or email at [email protected]. If you just want to talk to Dad to catch up and check on him, please feel free to call or text him.
One last thing. Dad's birthday is this Sunday. If you all want to email me birthday wishes I will get them printed on cards and deliver them to Dad. Again, my email is [email protected]. I want to say thank you to all of you for your kind words today and for all being so patient with me as I stumbled through phone calls. We'll keep you guys posted.
egd September 3, 2015
Hey y'all. Just a quick update...
First off, I know you are all wondering what Dr. Shureiqi had to say about Dad. Well we still are too as it turns out. Dad's appointment has been rescheduled until AFTER he speaks with the liver specialist. Dad sees Dr. Miller (the liver guy) on September 14 and will see Dr. Shureiqi on September 15. The liver appointment was previously scheduled for a week later, but they moved it up which is a good thing. It could possibly be moved even sooner, and we'll keep you posted on that. Dad was pretty bummed that he wouldn't be seeing Dr. Shureiqi tomorrow. He had prepared himself to hear the worst news and now has to wait another 11 days to find out if there is even a glimmer of hope. It's been an emotional rollercoaster for him this week and he is ready to be off of it. This also means no chemo for the next week and a half. While he's happy to not feel the effects of chemo, not being on it makes him nervous. Mom is still in contact with Dr. Shureiqi about the fluid in his abdomen. It's still accumulating and is getting to be uncomfortable. Mom doesn't want him to end up in the emergency center again so she is being proactive about the next paracentisis. We'll let you know more about that procedure once all the details get worked out.
Ok, on to today. Dad did undergo the Esophagogastroduodenoscopy (EGD) to determine if bleeding of the esophagus and stomach were of immediate concern. You'll remember the backlog of blood in the liver (portal HYPOtension) is causing the blood pressure in other parts of his body, namely the stomach and esophagus, to rise (portal HYPERtension). Fortunately, Dad does not seem to be in any immediate danger of hemorrhaging. He does show signs of mild portal hypertension. He also does have Grade 1 Varices, which is a bulge in the esophagus. The bulge does collapse when injected with gas or water, and that is a good thing. It means it's not in immediate danger of bursting. There is also a disease called GAVE, otherwise known as "watermelon stomach", where the blood vessels cause the stomach to look striped. GAVE is a very dangerous condition as it can cause the entire stomach to bleed at once. Dad does not have classic GAVE, but the doctor did note that it could POTENTIALLY represent a form of GAVE. No need to freak out about that though as he does not have any signs of being in immediate danger. We just want to make sure you all are familiar with the term, that way if Dad talks about his "watermelon stomach" you don't think he's just getting creative when talking about how round it is!
He did well during the procedure and recovered well after. He is currently sleeping hard. I know this because he's snorin' like a freight train in the next room. He does have an appointment with his neurologist for his neuropathy on Tuesday, but that will just be a quick trip to Houston and home. Once he's home Tuesday, he probably wouldn't mind company, just make sure you call or text first to see if he's up to it.
Ok, enough about cancer. Dad will be turning 54 (still alive!) on September 13. I'm going to be putting up a special page for his birthday so if you all would mark your calendars and make sure to flood this website with love and birthday wishes, we'd appreciate it! You guys are awesome and we love you! Have a great Labor Day weekend!
First off, I know you are all wondering what Dr. Shureiqi had to say about Dad. Well we still are too as it turns out. Dad's appointment has been rescheduled until AFTER he speaks with the liver specialist. Dad sees Dr. Miller (the liver guy) on September 14 and will see Dr. Shureiqi on September 15. The liver appointment was previously scheduled for a week later, but they moved it up which is a good thing. It could possibly be moved even sooner, and we'll keep you posted on that. Dad was pretty bummed that he wouldn't be seeing Dr. Shureiqi tomorrow. He had prepared himself to hear the worst news and now has to wait another 11 days to find out if there is even a glimmer of hope. It's been an emotional rollercoaster for him this week and he is ready to be off of it. This also means no chemo for the next week and a half. While he's happy to not feel the effects of chemo, not being on it makes him nervous. Mom is still in contact with Dr. Shureiqi about the fluid in his abdomen. It's still accumulating and is getting to be uncomfortable. Mom doesn't want him to end up in the emergency center again so she is being proactive about the next paracentisis. We'll let you know more about that procedure once all the details get worked out.
Ok, on to today. Dad did undergo the Esophagogastroduodenoscopy (EGD) to determine if bleeding of the esophagus and stomach were of immediate concern. You'll remember the backlog of blood in the liver (portal HYPOtension) is causing the blood pressure in other parts of his body, namely the stomach and esophagus, to rise (portal HYPERtension). Fortunately, Dad does not seem to be in any immediate danger of hemorrhaging. He does show signs of mild portal hypertension. He also does have Grade 1 Varices, which is a bulge in the esophagus. The bulge does collapse when injected with gas or water, and that is a good thing. It means it's not in immediate danger of bursting. There is also a disease called GAVE, otherwise known as "watermelon stomach", where the blood vessels cause the stomach to look striped. GAVE is a very dangerous condition as it can cause the entire stomach to bleed at once. Dad does not have classic GAVE, but the doctor did note that it could POTENTIALLY represent a form of GAVE. No need to freak out about that though as he does not have any signs of being in immediate danger. We just want to make sure you all are familiar with the term, that way if Dad talks about his "watermelon stomach" you don't think he's just getting creative when talking about how round it is!
He did well during the procedure and recovered well after. He is currently sleeping hard. I know this because he's snorin' like a freight train in the next room. He does have an appointment with his neurologist for his neuropathy on Tuesday, but that will just be a quick trip to Houston and home. Once he's home Tuesday, he probably wouldn't mind company, just make sure you call or text first to see if he's up to it.
Ok, enough about cancer. Dad will be turning 54 (still alive!) on September 13. I'm going to be putting up a special page for his birthday so if you all would mark your calendars and make sure to flood this website with love and birthday wishes, we'd appreciate it! You guys are awesome and we love you! Have a great Labor Day weekend!
"I'm very sorry, Mr. Matt" August 31, 2015
Hey family. We have some news and it's not good. It isn't unexpected either, but it is devastating just the same.
Mom and Dad met with Dr. Shureiqi today to discuss future plans for treatment as well as to review the events and tests from last week. Dr. Shureiqi told Dad that his liver is essentially failing. He does still have tumors in his liver; however, the tumors alone aren't the only thing responsible for the state of his liver. The chemotherapy and radiation treatment have all caused damage to any remaining healthy tissue. His liver is now unable to filter his blood effectively which has led to a build up of toxins and fluid in the body. He is also suffering from a condition called portal hypotension. Basically he has a backlog of blood that his liver can not keep up with. This can lead to increases in blood pressure elsewhere in the body and, worst case scenario, internal bleeding. Dad will undergo an Esophagogastroduodenoscopy (EGD) to make sure that there is no bleeding or potential for bleeding in his esophagus. That is an immediate and life threatening condition so Dr. Shureiqi wants to make sure all is ok there. Dr. Shureiqi is also going to consult with a liver specialist (Dad may meet with him as well) to see if there are any remaining options in terms of improving liver function. This doctor is not an oncologist; the liver tumors have already responded to chemo and radiation the best they are going to so meeting with another oncologist would not be of benefit. This specialist is being brought in to determine if there is any way to alleviate some of the problems/pain caused by his failing liver function. Dr. Shureiqi just wants to make sure all of his bases are covered, like always. Dad will also be going to an ENT just to make sure his sinuses are doing ok. Those are really the least of Dad's worries, but he is uncomfortable and there is no reason for him to be uncomfortable at this point. Dad will meet with Dr. Shureiqi this Friday to learn what the liver specialist says as well as the results of the EGD. We will also learn if chemotherapy is worth continuing.
What we don't know yet but will on Friday, is what we are looking at in terms of time. We do know that it isn't much. We also want to know what liver failure looks like and how to proceed with the coming dark days. At the end of his appointment, Dr. Shureiqi told Dad he was very sorry. Mom said this was the first time the doctor has ever looked sad. We all are.
We want to thank those of you who have reached out to us with your kind words and prayers and well wishes. It has been a long and very hard road for Dad (and all of us) these last twenty-one months. He is tired, but he is not done. And we will continue to fight alongside him as long as he needs us to. We also want to make sure you all know that now is the time to reach out to Dad if you feel you need to. If you need to make memories, please do.
We will post here again on Friday with any news we get. We love y'all.
Mom and Dad met with Dr. Shureiqi today to discuss future plans for treatment as well as to review the events and tests from last week. Dr. Shureiqi told Dad that his liver is essentially failing. He does still have tumors in his liver; however, the tumors alone aren't the only thing responsible for the state of his liver. The chemotherapy and radiation treatment have all caused damage to any remaining healthy tissue. His liver is now unable to filter his blood effectively which has led to a build up of toxins and fluid in the body. He is also suffering from a condition called portal hypotension. Basically he has a backlog of blood that his liver can not keep up with. This can lead to increases in blood pressure elsewhere in the body and, worst case scenario, internal bleeding. Dad will undergo an Esophagogastroduodenoscopy (EGD) to make sure that there is no bleeding or potential for bleeding in his esophagus. That is an immediate and life threatening condition so Dr. Shureiqi wants to make sure all is ok there. Dr. Shureiqi is also going to consult with a liver specialist (Dad may meet with him as well) to see if there are any remaining options in terms of improving liver function. This doctor is not an oncologist; the liver tumors have already responded to chemo and radiation the best they are going to so meeting with another oncologist would not be of benefit. This specialist is being brought in to determine if there is any way to alleviate some of the problems/pain caused by his failing liver function. Dr. Shureiqi just wants to make sure all of his bases are covered, like always. Dad will also be going to an ENT just to make sure his sinuses are doing ok. Those are really the least of Dad's worries, but he is uncomfortable and there is no reason for him to be uncomfortable at this point. Dad will meet with Dr. Shureiqi this Friday to learn what the liver specialist says as well as the results of the EGD. We will also learn if chemotherapy is worth continuing.
What we don't know yet but will on Friday, is what we are looking at in terms of time. We do know that it isn't much. We also want to know what liver failure looks like and how to proceed with the coming dark days. At the end of his appointment, Dr. Shureiqi told Dad he was very sorry. Mom said this was the first time the doctor has ever looked sad. We all are.
We want to thank those of you who have reached out to us with your kind words and prayers and well wishes. It has been a long and very hard road for Dad (and all of us) these last twenty-one months. He is tired, but he is not done. And we will continue to fight alongside him as long as he needs us to. We also want to make sure you all know that now is the time to reach out to Dad if you feel you need to. If you need to make memories, please do.
We will post here again on Friday with any news we get. We love y'all.
bullshit August 29, 2015
Dad picked the title this week. I'm afraid I share the sentiment though as this week totally was bullshit. As you all know, Dad was in the ER last Saturday to address the pain he was having from all of the fluid in his abdomen. As it turns out, there was no blockage or impaction; the fluid alone was causing all of his stomach pain. He met with Dr. Shureiqi on Tuesday who advised Dad there would be a CT Scan and then a paracentisis on Thursday to drain the fluid. While we were waiting for things to be scheduled, Dad's stomach grew even more and he was in an increasing amount of pain. He took some pain medication (which he doesn't really ever do, even now) and it helped only some. On Thursday morning when he woke up, he was still pretty impaired. He couldn't walk without support, his words were slurred, and he was pretty out of it. He did confess that he hadn't been this high since he smoked pot when he was seventeen. Interesting. We assumed his behavior was a hold over from the medication he took overnight; however, it didn't improve over the next few hours like you would expect. He then experienced shortness of breath. Mom decided to take him to the ER. He felt like he was going to pass out on the way there and we did consider an ambulance transfer to MD Anderson, but Mom helped him to breathe on the way by taking slow deep breaths with him. The fluid was compressing his diaphragm and lungs making it very difficult for him to take more than short, shallow breaths. This of course caused a bit of anxiety on Dad's part which in turn made him try to breath faster which caused him to be more breathless.
Once in the ER they placed him on oxygen and performed an EKG to make sure it wasn't his heart causing the issue. His EKG was normal as well as his blood pressure. They also did a chest X-ray to make sure there wasn't any pneumonia in the lungs that could be causing the breathing issues. Those came back normal (except for the tumors of course) so they ruled the fluid as the cause. They scheduled him right away for a paracentisis in the Interventional Radiology Lab so they could drain the fluid while imaging him. This way they could make sure to get as much as possible while not nicking any organs or intestines (which float and move in the fluid). They removed 2.7 liters of fluid, over four pounds worth, from his abdomen. There is still a lot in there; however, they could not safely remove all of it at once as that would have messed with his electrolyte levels, temperature, etc. Dad did feel immediate relief though, and was able to eat a bowl of soup with no pain and no pressure. That was something he hadn't been able to do in weeks. The confusion and disorientation Dad was experiencing also cleared up pretty quickly after the fluid was removed. Since his liver is not able to filter the waste fluid as fast as his body and the cancer cells produce it, there are all sorts of toxins in it that can cause those symptoms. It was pretty scary to see him like that in all honesty. We also know that the fluid will return and will need to be drained again. They did mention that he could have a shunt put in place so Mom can drain it at home rather than having to undergo the paracentisis every couple of weeks. He was released from the ER after the doctor consulted with Dr. Shureiqi. And, just because when it rains it pours, got a flat tire on the way out of the hospital parking garage. Thanks universe!
Dad was originally scheduled to see Dr. Shureiqi on Friday; however, the doctor really wanted Dad to have a CT scan done prior to his visit. Dr. Shureiqi is nothing if not thorough and wants to have everything reviewed before he sees Dad. So Dad did the CT on Friday instead and will see Dr. Shureiqi on Monday. We had sort of prepared ourselves for the worst news, so when the appointment was rescheduled, it was both good and bad. It gave us a few more days of the ignorance-is-bliss-sort-of-thing, but it is definitely a dark (and very stressful) cloud hanging overhead. Dad had it pretty rough last week, but as ever is handling all of this with more humor and grace than I could ever muster. He is amazing. We will certainly let all of you know what the report is once we find out on Monday. If your looking for something to do this weekend, you could totally shoot up some prayers, positive vibes, happy thoughts, voodoo, whatever your persuasion. We'd really appreciate it. Until Monday...
Once in the ER they placed him on oxygen and performed an EKG to make sure it wasn't his heart causing the issue. His EKG was normal as well as his blood pressure. They also did a chest X-ray to make sure there wasn't any pneumonia in the lungs that could be causing the breathing issues. Those came back normal (except for the tumors of course) so they ruled the fluid as the cause. They scheduled him right away for a paracentisis in the Interventional Radiology Lab so they could drain the fluid while imaging him. This way they could make sure to get as much as possible while not nicking any organs or intestines (which float and move in the fluid). They removed 2.7 liters of fluid, over four pounds worth, from his abdomen. There is still a lot in there; however, they could not safely remove all of it at once as that would have messed with his electrolyte levels, temperature, etc. Dad did feel immediate relief though, and was able to eat a bowl of soup with no pain and no pressure. That was something he hadn't been able to do in weeks. The confusion and disorientation Dad was experiencing also cleared up pretty quickly after the fluid was removed. Since his liver is not able to filter the waste fluid as fast as his body and the cancer cells produce it, there are all sorts of toxins in it that can cause those symptoms. It was pretty scary to see him like that in all honesty. We also know that the fluid will return and will need to be drained again. They did mention that he could have a shunt put in place so Mom can drain it at home rather than having to undergo the paracentisis every couple of weeks. He was released from the ER after the doctor consulted with Dr. Shureiqi. And, just because when it rains it pours, got a flat tire on the way out of the hospital parking garage. Thanks universe!
Dad was originally scheduled to see Dr. Shureiqi on Friday; however, the doctor really wanted Dad to have a CT scan done prior to his visit. Dr. Shureiqi is nothing if not thorough and wants to have everything reviewed before he sees Dad. So Dad did the CT on Friday instead and will see Dr. Shureiqi on Monday. We had sort of prepared ourselves for the worst news, so when the appointment was rescheduled, it was both good and bad. It gave us a few more days of the ignorance-is-bliss-sort-of-thing, but it is definitely a dark (and very stressful) cloud hanging overhead. Dad had it pretty rough last week, but as ever is handling all of this with more humor and grace than I could ever muster. He is amazing. We will certainly let all of you know what the report is once we find out on Monday. If your looking for something to do this weekend, you could totally shoot up some prayers, positive vibes, happy thoughts, voodoo, whatever your persuasion. We'd really appreciate it. Until Monday...
Trip to the emergency center August 22, 2015
Hey Everyone. Just a quick update about Dad...
For the past few weeks Dad has been experiencing some discomfort in his stomach. He feels full after eating very little or not at all and feels bloated most of the time. It has gotten worse the past couple of days to the point where it is a little uncomfortable to breathe and his stomach is pretty distended (think pregnant belly). He says he looks "a week past due." He isn't wrong, poor guy. Mom took him to the Emergency Center at MDA this afternoon to have him checked since we suspected it was a pretty serious fluid build up. They drew blood, took X-Rays and performed an ultrasound. He has a bit of back up in his intestines (see, he is full of s*!# y'all) as well as a large amount of fluid on the right side of his abdomen. Both of which are contributing to his pain. He was given medications to help his intestines along as well given the option of being admitted and scheduling a paracentisis (where they stick a needle in the abdomen and draw out the fluid) for tomorrow. He is on blood thinners so they would have to make sure he was off of them for 24 hours before the procedure. Dad really didn't feel like staying over night at the hospital. So since he goes to see Dr. Shureiqi on Tuesday, and since the fluid is not going to cause him any harm and only discomfort for the next three days, the Emergency Doctor agreed to discharge him home. Mom's calling Dr. Shureiqi's nurse on Monday to give her a heads up and to schedule any procedures/ceasing of medications. A paracentisis will help relieve the fluid and discomfort; however, the fluid will come back. The fluid build up is a side effect of his loss of liver function so no matter how many times they remove it, it will slowly re-accumulate as his body can no longer absorb and pass it quickly enough. The doctor did mention that you want to wait as long as you can to have the paracentisis performed as there are risks associated including infection, bleeding, and damage done to surrounding tissues. We'll know more once we talk to Dr. Shureiqi on Tuesday. It could also affect chemo this week, but again we won't know that until his appointment. That's all the information we have for now. Dad is very tired so he is on strict orders (from Mom and myself) to relax until Tuesday. No visitors or visiting. I'll update you all once we know how Dr. Shureiqi wants to proceed. Hope everyone is enjoying their weekend!
For the past few weeks Dad has been experiencing some discomfort in his stomach. He feels full after eating very little or not at all and feels bloated most of the time. It has gotten worse the past couple of days to the point where it is a little uncomfortable to breathe and his stomach is pretty distended (think pregnant belly). He says he looks "a week past due." He isn't wrong, poor guy. Mom took him to the Emergency Center at MDA this afternoon to have him checked since we suspected it was a pretty serious fluid build up. They drew blood, took X-Rays and performed an ultrasound. He has a bit of back up in his intestines (see, he is full of s*!# y'all) as well as a large amount of fluid on the right side of his abdomen. Both of which are contributing to his pain. He was given medications to help his intestines along as well given the option of being admitted and scheduling a paracentisis (where they stick a needle in the abdomen and draw out the fluid) for tomorrow. He is on blood thinners so they would have to make sure he was off of them for 24 hours before the procedure. Dad really didn't feel like staying over night at the hospital. So since he goes to see Dr. Shureiqi on Tuesday, and since the fluid is not going to cause him any harm and only discomfort for the next three days, the Emergency Doctor agreed to discharge him home. Mom's calling Dr. Shureiqi's nurse on Monday to give her a heads up and to schedule any procedures/ceasing of medications. A paracentisis will help relieve the fluid and discomfort; however, the fluid will come back. The fluid build up is a side effect of his loss of liver function so no matter how many times they remove it, it will slowly re-accumulate as his body can no longer absorb and pass it quickly enough. The doctor did mention that you want to wait as long as you can to have the paracentisis performed as there are risks associated including infection, bleeding, and damage done to surrounding tissues. We'll know more once we talk to Dr. Shureiqi on Tuesday. It could also affect chemo this week, but again we won't know that until his appointment. That's all the information we have for now. Dad is very tired so he is on strict orders (from Mom and myself) to relax until Tuesday. No visitors or visiting. I'll update you all once we know how Dr. Shureiqi wants to proceed. Hope everyone is enjoying their weekend!
Sigh of Relief July 24, 2015
Holy smokes! What a day. After Dad's appointment Tuesday, we were all feeling pretty deflated. We definitely cried more than a few tears and got more than a little pissed (well I did anyway). Needless to say we weren't too optimistic going into today's appointment. What do we know though? As it turns out, Dad's tumors are not regrowing. In fact, the tumors in his liver have shrunk a little more. The tumors in his lungs are not growing either. Phew! Doesn't that feel good?!
Dad asked why his numbers continued to increase if there was no tumor growth. Dr. Shureiqi didn't really have an answer for that. He mentioned it could be Dad's "new normal" and things were just fluctuating or that there could be something gearing up to "rear its ugly head." For now though, the tumors are still in check. Dr. Shureiqi also feels that now is the time to switch up chemo drugs. Dad will be taken off of Zaltrap and put on a brand new drug called Cyramza. This drug works similarly to Avastin and Zaltrap but is newly approved by the FDA and has performed well in animal studies. I know you may be thinking, "why rock the boat?" and "but Buddy isn't a lab monkey. Is he?" Well, while the chemo has definitely made an impact on his tumors, it was the radiation therapy he recently underwent that caused the most drastic improvement. At this point, while chemo will help to keep tumor growth under control it won't really do much to reverse tumor growth. If he is going to switch, he needs to do it at a time when things are managed which is now. Cyramza has a lot of promise, but very few human studies (and no side-by-side studies with Zaltrap or Avastin) to back it up. But, Dr. Shureiqi feels confident that it could help and from what I have researched online I can see why. He hasn't led Dad astray yet!
He will resume his Wednesday chemo/Friday disconnect schedule this coming Wednesday. For now, we can all breathe a little easier on the cancer front. Dr. Shureiqi did mention that he is a bit concerned by Dad's chemo-induced high blood pressure--he's been on medication for that for a few months now--and is working to get things under control. Dr. Shureiqi is always puttin' out fires with Dad and we are so grateful for him!
Dad wanted me to thank everyone (and there were lots of you!) who showed him extra love and support on what could have been a much more difficult day. You guys look good in blue, he says. Mom and I want to thank you all for your kind words to us as well. Obviously Dad is the one who is shouldering this burden, but it's nice to know that you guys are here for us too. We have the best family (friends, you're included in that) anyone could ask for. We hope everyone has a FANTASTIC weekend. You have no reason not to! I'll update you guys again once Dad's had the new chemo drug. Until then!
Dad asked why his numbers continued to increase if there was no tumor growth. Dr. Shureiqi didn't really have an answer for that. He mentioned it could be Dad's "new normal" and things were just fluctuating or that there could be something gearing up to "rear its ugly head." For now though, the tumors are still in check. Dr. Shureiqi also feels that now is the time to switch up chemo drugs. Dad will be taken off of Zaltrap and put on a brand new drug called Cyramza. This drug works similarly to Avastin and Zaltrap but is newly approved by the FDA and has performed well in animal studies. I know you may be thinking, "why rock the boat?" and "but Buddy isn't a lab monkey. Is he?" Well, while the chemo has definitely made an impact on his tumors, it was the radiation therapy he recently underwent that caused the most drastic improvement. At this point, while chemo will help to keep tumor growth under control it won't really do much to reverse tumor growth. If he is going to switch, he needs to do it at a time when things are managed which is now. Cyramza has a lot of promise, but very few human studies (and no side-by-side studies with Zaltrap or Avastin) to back it up. But, Dr. Shureiqi feels confident that it could help and from what I have researched online I can see why. He hasn't led Dad astray yet!
He will resume his Wednesday chemo/Friday disconnect schedule this coming Wednesday. For now, we can all breathe a little easier on the cancer front. Dr. Shureiqi did mention that he is a bit concerned by Dad's chemo-induced high blood pressure--he's been on medication for that for a few months now--and is working to get things under control. Dr. Shureiqi is always puttin' out fires with Dad and we are so grateful for him!
Dad wanted me to thank everyone (and there were lots of you!) who showed him extra love and support on what could have been a much more difficult day. You guys look good in blue, he says. Mom and I want to thank you all for your kind words to us as well. Obviously Dad is the one who is shouldering this burden, but it's nice to know that you guys are here for us too. We have the best family (friends, you're included in that) anyone could ask for. We hope everyone has a FANTASTIC weekend. You have no reason not to! I'll update you guys again once Dad's had the new chemo drug. Until then!
Change of plans July 21, 2015
Hi everyone. Dad had an appointment with Dr. Shureiqi today and as a result of the appointment, he will no longer have chemo tomorrow. Dad's blood work showed that his numbers increased from 65 to 135. Because of this, Dr. Shureiqi does not feel comfortable with Dad receiving treatment until he can see exactly what's going on in there. Dad will instead have a set of CT Scans performed this week and will see Dr. Shureiqi on Friday to discuss results. Dr. Shureiqi seems to think that the lung tumor (that little one that grew a bit after the radiation therapy) may be the culprit for the increase. However, he won't know for sure until the scans are completed. He also mentioned that everything may be ok and that Dad's "normal" range may allow for small fluctuations in his tumor markers like this.
Dr. Shureiqi is never one to wait very long if something doesn't seem to be working, so he discussed some additional treatment options as well. He didn't go into too much detail as he is waiting to see the scans, but he wanted Mom and Dad to have a general idea of what may be next including medication changes and experimental treatments. I'll post another update this weekend after his appointment with the oncologist. Obviously Dad's bummed about his results. We all are, but we're also trying to stay as positive as possible until we know the results of his scans. If you have a minute and would like to send Dad a "we're with ya, Bud!" text, that would be awesome. You can also feel free to leave him some love on his guestbook. And as a friendly reminder, PLEASE speak with your doctor about a colon cancer screening. Sooner people, rather than later. Hope everyone is having a good week. Until this weekend.
Dr. Shureiqi is never one to wait very long if something doesn't seem to be working, so he discussed some additional treatment options as well. He didn't go into too much detail as he is waiting to see the scans, but he wanted Mom and Dad to have a general idea of what may be next including medication changes and experimental treatments. I'll post another update this weekend after his appointment with the oncologist. Obviously Dad's bummed about his results. We all are, but we're also trying to stay as positive as possible until we know the results of his scans. If you have a minute and would like to send Dad a "we're with ya, Bud!" text, that would be awesome. You can also feel free to leave him some love on his guestbook. And as a friendly reminder, PLEASE speak with your doctor about a colon cancer screening. Sooner people, rather than later. Hope everyone is having a good week. Until this weekend.
All BUt one June 11, 2015
Hi y'all! First off...sorry! I'm late to update. I'm blaming my almost 7 month old. Again. This little update will be short and definitely sweet. Dad's scans came back and the results were better than we ever expected! Basically, all of Dad's liver tumors are under control. The radiation therapy was well received by Dad and did exactly what they were hoping it would. Dr. Shureiqi was very pleased with the results. So were we! He also noted that this was still early in the game and that the radiation could continue to work. Now there is one pesky little tumor in his lung that grew from 8 mm to 9mm despite the treatment, but Dr. Shureiqi isn't worried about it at this time so neither are we. Dad is going to continue is chemo regimen (Zaltrap, Irinotecan, 5-FU) as long as he can tolerate it and his CEA numbers stay within an acceptable range. His next set of scans will be done in three months. Dad just wrapped his 39th round of chemo and gets his pump off tomorrow. Other than fatigue, he really hasn't felt too badly this round. It helps of course that he's going to kick back and relax in Tennessee for a week. Bum. Just kidding! He totally deserves this mountain getaway and he is so excited about it. It's pretty cute to watch him talk about it all the stuff he's going to do! Rapids! Roller coasters! Museums! Oh my! He's even going to work in a little horseback riding too. I wonder if he'll actually spend any time relaxing in his mountainside cabin...
That's really all for now, but man, I think that's enough! He is such a trooper and even though this radiation therapy was the WORST in terms of side effects, he powered through and it totally paid off. And we are so grateful. We hope you all have a fantastic weekend. Although, I can say with certainty that it probably won't be as fantastic as Dad's! Love y'all.
That's really all for now, but man, I think that's enough! He is such a trooper and even though this radiation therapy was the WORST in terms of side effects, he powered through and it totally paid off. And we are so grateful. We hope you all have a fantastic weekend. Although, I can say with certainty that it probably won't be as fantastic as Dad's! Love y'all.
86 May 21, 2015
Hey everybody! So there's good news and great news and some other information. We'll save the best for last.
Dad went in for his regularly scheduled appointment Tuesday, May 19. During the exam Dr. Shureiqi noted that Dad had a cough that didn't sound like it was from chemo or radiation or another blood clot or the tumors in his lungs. He didn't like the way it sounded though so he immediately sent Dad for X-Rays to rule out pneumonia. After the X-Rays, Dad went back up to finish his appointment. Fortunately, he doesn't have pneumonia! That's the good news. If he would have had it, he would have been admitted to the hospital. Phew.
The doctor feels like it could be an infection of his airways so he placed Dad on some pretty strong antibiotics for the next 7 days. If it doesn't clear up, he will be referred to and ENT for a scope of his sinuses. He felt it was also best to delay chemo for a this week in case Dad's cough did turn into pneumonia. That way he doesn't knock down his immune system if he needs it in the next couple of days.
Dad will resume chemo next Wednesday and will now be on a Wednesday-Friday schedule (goodbye Tuesday-Thursday schedule after 37 cycles!)
Now for the great news. Dr. Shureiqi let Dad know is new CEA levels. They are at 86. Down from 469. This means that the radiation treatment, along with the continued chemo Daddy takes like a champ every two weeks, has worked. To be clear, this is not a "cure" but he has positively responded to the treatments and that most certainly means extension of life. And THAT is pretty much the best news ever!
Because Dad's numbers improved so much, the doctor wants to go ahead and schedule a set of scans to see exactly which tumors responded to the radiation and by how much. So next week will go as follows: Scans on Monday, May 25, Dr. Shureiqi on the 26th, and chemo on the 27th. For now, Dad's still feeling a little worn out (this cough isn't really helping) but the awesome news he got Tuesday put a little extra pep in his step for sure. We will surely let you all know how the scans go once we get the results next Tuesday. I have uploaded the most current calendar for his treatment which can be found under the "Treatment Schedule" tab. That's all the updates we have for now, but we'll be back on Tuesday with scan results. We want to wish everyone a safe and happy Memorial Day weekend! Bye, y'all!
Dad went in for his regularly scheduled appointment Tuesday, May 19. During the exam Dr. Shureiqi noted that Dad had a cough that didn't sound like it was from chemo or radiation or another blood clot or the tumors in his lungs. He didn't like the way it sounded though so he immediately sent Dad for X-Rays to rule out pneumonia. After the X-Rays, Dad went back up to finish his appointment. Fortunately, he doesn't have pneumonia! That's the good news. If he would have had it, he would have been admitted to the hospital. Phew.
The doctor feels like it could be an infection of his airways so he placed Dad on some pretty strong antibiotics for the next 7 days. If it doesn't clear up, he will be referred to and ENT for a scope of his sinuses. He felt it was also best to delay chemo for a this week in case Dad's cough did turn into pneumonia. That way he doesn't knock down his immune system if he needs it in the next couple of days.
Dad will resume chemo next Wednesday and will now be on a Wednesday-Friday schedule (goodbye Tuesday-Thursday schedule after 37 cycles!)
Now for the great news. Dr. Shureiqi let Dad know is new CEA levels. They are at 86. Down from 469. This means that the radiation treatment, along with the continued chemo Daddy takes like a champ every two weeks, has worked. To be clear, this is not a "cure" but he has positively responded to the treatments and that most certainly means extension of life. And THAT is pretty much the best news ever!
Because Dad's numbers improved so much, the doctor wants to go ahead and schedule a set of scans to see exactly which tumors responded to the radiation and by how much. So next week will go as follows: Scans on Monday, May 25, Dr. Shureiqi on the 26th, and chemo on the 27th. For now, Dad's still feeling a little worn out (this cough isn't really helping) but the awesome news he got Tuesday put a little extra pep in his step for sure. We will surely let you all know how the scans go once we get the results next Tuesday. I have uploaded the most current calendar for his treatment which can be found under the "Treatment Schedule" tab. That's all the updates we have for now, but we'll be back on Tuesday with scan results. We want to wish everyone a safe and happy Memorial Day weekend! Bye, y'all!
Sledgehammer April 9, 2015
Hey family. We wanted to post an update to let you all know how Dad's doing. First off, the procedure went well. It took about 3 hours and everything went as planned. Dr. Mahvash did report to Mom that about 5% of patients have a particular vein that runs to their belly buttons. Guess who's one of the 5%. This does allow a bit of radiation to flow away from the liver and to the abdomen, but it's a small amount and shouldn't cause much damage. He was in a lot of pain immediately following the SIR-T treatment. He did receive pain medicine after, but it didn't really work as well as he would have hoped. After the procedure, he was in recovery for a couple of hours and was then sent to the nuclear medicine lab for scans.
Mom booked a hotel room a couple of blocks away from MD Anderson so Dad could convalesce. It's a good thing she did because there is no way he could have made it to my house in Katy, let alone all the way home to Groves. They are going to make an attempt to head home Friday, but it will be very slow going. He is still in a lot of pain. He said he feels like someone strung him up between two poles, then simultaneously kicked him in the crotch and took a sledgehammer to his chest. Yikes. He also doesn't really care to eat at the moment. Most of the time he feels overly full (he hasn't really eaten since yesterday) and when he does eat or drink, he begins to cramp. He is drinking though so that's good. He's taking small bites here and there. Last I heard, there wasn't too much by way of nausea yet, but that is sure to come. The doctor prescribed steroids, pain meds, anti-nausea meds, and pills for reflux to help curb the inevitable damage to his stomach. Dr. Mahvash also noted that 98% of patients feel extreme fatigue. It doesn't appear that Dad will be any exception. He feels like crap and you can hear it in his voice. The silver lining is that it is only temporary (although that doesn't offer much consolation for his suffering right now) and has the potential to really extend his life. We don't know if or how well it will work, but when we do, we will surely let you all know.
While he heals, please continue to call or text, just know that he may not respond right away. Remember, no visitors until we give the go ahead. We want to say thank you to those of you who texted or facebooked or called with words of support and encouragement. There really should exist a word stronger than 'thank you' for situations like these but until then, thank you. You guys are awesome and we love you. He has a doctor's appointment next Friday and chemo (poor guy) on the 21st. All that information can be found on the "TREATMENT SCHEDULE" tab. Until then, he'll just be laying low. We'll update any new information after the upcoming appointments. We hope you all have a fantastic Friday and a wonderful weekend!
Mom booked a hotel room a couple of blocks away from MD Anderson so Dad could convalesce. It's a good thing she did because there is no way he could have made it to my house in Katy, let alone all the way home to Groves. They are going to make an attempt to head home Friday, but it will be very slow going. He is still in a lot of pain. He said he feels like someone strung him up between two poles, then simultaneously kicked him in the crotch and took a sledgehammer to his chest. Yikes. He also doesn't really care to eat at the moment. Most of the time he feels overly full (he hasn't really eaten since yesterday) and when he does eat or drink, he begins to cramp. He is drinking though so that's good. He's taking small bites here and there. Last I heard, there wasn't too much by way of nausea yet, but that is sure to come. The doctor prescribed steroids, pain meds, anti-nausea meds, and pills for reflux to help curb the inevitable damage to his stomach. Dr. Mahvash also noted that 98% of patients feel extreme fatigue. It doesn't appear that Dad will be any exception. He feels like crap and you can hear it in his voice. The silver lining is that it is only temporary (although that doesn't offer much consolation for his suffering right now) and has the potential to really extend his life. We don't know if or how well it will work, but when we do, we will surely let you all know.
While he heals, please continue to call or text, just know that he may not respond right away. Remember, no visitors until we give the go ahead. We want to say thank you to those of you who texted or facebooked or called with words of support and encouragement. There really should exist a word stronger than 'thank you' for situations like these but until then, thank you. You guys are awesome and we love you. He has a doctor's appointment next Friday and chemo (poor guy) on the 21st. All that information can be found on the "TREATMENT SCHEDULE" tab. Until then, he'll just be laying low. We'll update any new information after the upcoming appointments. We hope you all have a fantastic Friday and a wonderful weekend!
Please also check the "support" tab for a thank you from dad
radioactive! April 7, 2015
Hey all! Just a quick update to let you know that Dad's SIR-T procedure (the radiation) is tomorrow at 11:30. It's a long process that includes a round of scans afterward, so he'll be out of commission for most of the day. He had his preliminary appointment today and everything is a go for a full dose of radiation in both liver lobes.
I also want you guys to please make a note of how this treatment will affect him. He will more than likely experience flu-like symptoms and nausea for the next two weeks. That being said, please make sure to call or text first before stopping by. We know you guys are respectful of him in terms of recovering from treatment, but radiation is a whole different animal. And we're a little over protective of him since we love him so dang much! We'll let you all know once he's feeling better and ready for company.
Also, if you have a second, send Mom a Happy Anniversary text tomorrow! 33 years of love and happiness and how do they celebrate it? With a healthy dose of radiation! Whatever floats their boat! Weirdos.
We won't know the effects of the radiation for a few weeks, but we'll post here when we do. In the mean time, please send up your happy thoughts, positive prayers, and good vibrations. We sure could use them! Until next time...
I also want you guys to please make a note of how this treatment will affect him. He will more than likely experience flu-like symptoms and nausea for the next two weeks. That being said, please make sure to call or text first before stopping by. We know you guys are respectful of him in terms of recovering from treatment, but radiation is a whole different animal. And we're a little over protective of him since we love him so dang much! We'll let you all know once he's feeling better and ready for company.
Also, if you have a second, send Mom a Happy Anniversary text tomorrow! 33 years of love and happiness and how do they celebrate it? With a healthy dose of radiation! Whatever floats their boat! Weirdos.
We won't know the effects of the radiation for a few weeks, but we'll post here when we do. In the mean time, please send up your happy thoughts, positive prayers, and good vibrations. We sure could use them! Until next time...
Extra! Extra! Read all about it! March 24, 2015
Hey everybody! Dad wanted me to post a quick update (he even came up with that kicky little title) about today's developments. As it turns out, Dad is a candidate for the radiation therapy and his procedure is scheduled for Wednesday, April 8! This is exciting news! We have no idea if it will actually work to reduce the tumors, but at least they get to try.
Dad still had chemo tonight (he should finish up around 8:30) but he will not have chemo on April 7 in order to make sure his blood vessels are good and open for the SIRT procedure.
That's about it for today, but it was too good not to post. He needed to hear something positive and we figured you all did too. We'll post again in two weeks after he has the procedure. Of course we won't know whether or not it does the trick for a while after that but we'll let you know how he's recovering.
Also Dad wanted me to send a big "thank you" to everyone who participated in the Dress in Blue Day here and on
Facebook. He knows you are all behind him, but it really means a lot to him when he actually sees a show of support like that. So, from Dad, THANK YOU! We hope you have a great rest of the week. We know we will!
Dad still had chemo tonight (he should finish up around 8:30) but he will not have chemo on April 7 in order to make sure his blood vessels are good and open for the SIRT procedure.
That's about it for today, but it was too good not to post. He needed to hear something positive and we figured you all did too. We'll post again in two weeks after he has the procedure. Of course we won't know whether or not it does the trick for a while after that but we'll let you know how he's recovering.
Also Dad wanted me to send a big "thank you" to everyone who participated in the Dress in Blue Day here and on
Facebook. He knows you are all behind him, but it really means a lot to him when he actually sees a show of support like that. So, from Dad, THANK YOU! We hope you have a great rest of the week. We know we will!
Half way there March 23, 2015
Getting his mind right before the procedure.
Hey all! Tonight's update will be brief, but we did want to let you guys know how the first part of the test procedure went. In a word, pretty good. That was two words but you get the idea. The two things we needed to have happen were for the veins to be open enough to get the irradiated pellets through; secondly, we needed the tumors to absorb the test radioactive material. As it turns out, Dad's veins looked good. They were open enough to accommodate the spheres. That was step one.
After his procedure, he moved to the nuclear medicine lab to have images taken of his liver. The tests took a while but will show the doctors a complete picture of how the tumors respond to radiation. Remember, the radiation he received today was not to treat anything; rather, it was to see how the tumors would respond to actual treatment. Dr. Mahvash has to read the results over the next couple of days and decide if Dad meets the second part of the criteria--adequate absorption. We'll know more about that hopefully by the end of this week. In the mean time, Dad is still scheduled for the actual procedure on April 8. If something changes (good or bad) we'll post here. As far as recovery goes, he's pretty sore. They go in through the femoral artery so his groin area is a little uncomfortable. He used this as leverage to request a pretty elaborate dinner. He's totally milking this whole cancer thing.
He's still scheduled for chemo tomorrow. Hopefully it won't be too rough on him. We are hoping they hold the Zaltrap as he is really tired for a long time after receiving that particular drug. It is also a drug that closes the blood supply to the tumors so Dr. Shureiqi may withhold it this time to keep the vessels open for the April 8 procedure (if he's a candidate.)
That's really all for now. He's doing pretty well physically. He did experience a few mouth sores this last week, but Dr. Shureiqi is on it and prescribed some things that help clear them up. His mental state seems to be a lot better this week too. Last week he was dealt a pretty rough blow. It's still a bit of a waiting game but we feel a bit better tonight knowing the blood vessels are open enough. Once we have more information, we'll let you guys know. In the mean time, we hope you all have a fantastic week. Enjoy the sunshine, y'all!
After his procedure, he moved to the nuclear medicine lab to have images taken of his liver. The tests took a while but will show the doctors a complete picture of how the tumors respond to radiation. Remember, the radiation he received today was not to treat anything; rather, it was to see how the tumors would respond to actual treatment. Dr. Mahvash has to read the results over the next couple of days and decide if Dad meets the second part of the criteria--adequate absorption. We'll know more about that hopefully by the end of this week. In the mean time, Dad is still scheduled for the actual procedure on April 8. If something changes (good or bad) we'll post here. As far as recovery goes, he's pretty sore. They go in through the femoral artery so his groin area is a little uncomfortable. He used this as leverage to request a pretty elaborate dinner. He's totally milking this whole cancer thing.
He's still scheduled for chemo tomorrow. Hopefully it won't be too rough on him. We are hoping they hold the Zaltrap as he is really tired for a long time after receiving that particular drug. It is also a drug that closes the blood supply to the tumors so Dr. Shureiqi may withhold it this time to keep the vessels open for the April 8 procedure (if he's a candidate.)
That's really all for now. He's doing pretty well physically. He did experience a few mouth sores this last week, but Dr. Shureiqi is on it and prescribed some things that help clear them up. His mental state seems to be a lot better this week too. Last week he was dealt a pretty rough blow. It's still a bit of a waiting game but we feel a bit better tonight knowing the blood vessels are open enough. Once we have more information, we'll let you guys know. In the mean time, we hope you all have a fantastic week. Enjoy the sunshine, y'all!
Before.
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After. Still a little loopy.
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Radiology Consultation March 11, 2015
Hey everyone. Here's the latest update on Dad.
Monday, Dad met with Dr. Mahvash--an interventional radiologist--to discuss whether or not Dad is a candidate for radiation therapy. The type of treatment in question (called SIR-Sphere Treatment) involves injecting irradiated spheres through a catheter in Dad's leg and into the tumors' blood supply. This is a precise technique that allows them to deliver a much higher rate of radiation directly to the tumors without causing much damage to the surrounding tissues. I'm including a brief video showing how the procedure works at the end of this post.
However, there are some very specific requirements that are necessary for Dad to be a candidate. First, they will have to complete a mock run of the procedure in which they perform the exact operation but use only a small amount of radiation. This will allow the doctor to see:
1. Whether or not he can even access the tumors via Dad's veins.
2. Whether or not the radiation is actually being absorbed by the tumors.
If Dad does not meet both of these requirements, they will not go through with the procedure. There are also a couple of things working against him at this point that could reduce the likelihood of him being a candidate for the procedure:
1. Dad's been on Avastin and now Zaltrap. The purpose of these drugs is to shrink the blood vessels that feed the tumors which basically causes them to starve. This also means that the pathway needed to inject the spheres is smaller and may not be large enough to allow the pellets through.
2. At one point Dad had over 20 tumors in his liver. The sheer number of tumors they need to treat could pose a problem as they may not be able to access them all.
What does this mean? On March 23, they are going to complete a trial run through of the SIR-Spheres Treatment. If he is a candidate, then the actual procedure will be carried out on April 8 (Happy Anniversary Mom and Dad!). If he has the procedure AND it works (no guarantees) then it will add 3-6 months on to Dad's life. Yep, months. If they are able to give the treatment and it works, they may consider doing it a second time to extend life; although, this has only ever been done for 10 patients.
If Dad is not a candidate OR if he is a candidate but the procedure DOES NOT take, then we are currently out of options. There COULD be another trial that comes up between now and then. But for now, this where we are. He will continue to undergo chemotherapy to slow tumor growth as much as possible. Currently, his liver and kidney outputs (measured every time he goes for treatment) are considered "normal" which means that he will continue receiving chemo as long as his body can tolerate it. Obviously normal for Dad is very different than what would be acceptable for you or me. Dr. Shureiqi has told Dad he is not yet at the "critical" level; however, there are some harsh realities that are imminent and we want to make sure everyone is on the same page.
I know what you are wondering and no, currently, we do not have a "number". If Dad is a candidate AND the procedure works, it would add an additional 3-6 months on top of whatever time he currently has left. We haven't been given that number yet. Dad has compared it to a freight train. He said we may slow it down, but at this point there's no stopping it. Unfortunately, he is right. Of course, this was a tough week for he and Mom and the rest of us. However, we are trying to stay as upbeat as possible.
Please don't mistake me, this is not over. He still has a lot of fight left in him and so do we. We know you all do too. We just feel as though it is important that we are completely candid with all of you about the reality that we are facing. We love you all so much, and thank you all for everything you are doing to support Dad. Please make sure to stop by the "Support" tab to check out an Easter basket raffle Holly Matt and her crew put together because they're awesome! We will update you when we know more. Until then...
Monday, Dad met with Dr. Mahvash--an interventional radiologist--to discuss whether or not Dad is a candidate for radiation therapy. The type of treatment in question (called SIR-Sphere Treatment) involves injecting irradiated spheres through a catheter in Dad's leg and into the tumors' blood supply. This is a precise technique that allows them to deliver a much higher rate of radiation directly to the tumors without causing much damage to the surrounding tissues. I'm including a brief video showing how the procedure works at the end of this post.
However, there are some very specific requirements that are necessary for Dad to be a candidate. First, they will have to complete a mock run of the procedure in which they perform the exact operation but use only a small amount of radiation. This will allow the doctor to see:
1. Whether or not he can even access the tumors via Dad's veins.
2. Whether or not the radiation is actually being absorbed by the tumors.
If Dad does not meet both of these requirements, they will not go through with the procedure. There are also a couple of things working against him at this point that could reduce the likelihood of him being a candidate for the procedure:
1. Dad's been on Avastin and now Zaltrap. The purpose of these drugs is to shrink the blood vessels that feed the tumors which basically causes them to starve. This also means that the pathway needed to inject the spheres is smaller and may not be large enough to allow the pellets through.
2. At one point Dad had over 20 tumors in his liver. The sheer number of tumors they need to treat could pose a problem as they may not be able to access them all.
What does this mean? On March 23, they are going to complete a trial run through of the SIR-Spheres Treatment. If he is a candidate, then the actual procedure will be carried out on April 8 (Happy Anniversary Mom and Dad!). If he has the procedure AND it works (no guarantees) then it will add 3-6 months on to Dad's life. Yep, months. If they are able to give the treatment and it works, they may consider doing it a second time to extend life; although, this has only ever been done for 10 patients.
If Dad is not a candidate OR if he is a candidate but the procedure DOES NOT take, then we are currently out of options. There COULD be another trial that comes up between now and then. But for now, this where we are. He will continue to undergo chemotherapy to slow tumor growth as much as possible. Currently, his liver and kidney outputs (measured every time he goes for treatment) are considered "normal" which means that he will continue receiving chemo as long as his body can tolerate it. Obviously normal for Dad is very different than what would be acceptable for you or me. Dr. Shureiqi has told Dad he is not yet at the "critical" level; however, there are some harsh realities that are imminent and we want to make sure everyone is on the same page.
I know what you are wondering and no, currently, we do not have a "number". If Dad is a candidate AND the procedure works, it would add an additional 3-6 months on top of whatever time he currently has left. We haven't been given that number yet. Dad has compared it to a freight train. He said we may slow it down, but at this point there's no stopping it. Unfortunately, he is right. Of course, this was a tough week for he and Mom and the rest of us. However, we are trying to stay as upbeat as possible.
Please don't mistake me, this is not over. He still has a lot of fight left in him and so do we. We know you all do too. We just feel as though it is important that we are completely candid with all of you about the reality that we are facing. We love you all so much, and thank you all for everything you are doing to support Dad. Please make sure to stop by the "Support" tab to check out an Easter basket raffle Holly Matt and her crew put together because they're awesome! We will update you when we know more. Until then...
It's here! March 6, 2015
Hey everyone! We made to another "Dress in Blue Day!" Make sure you wear your blue and spread the word to others about the importance of getting screened for colon cancer. It isn't just an "old man's disease". Men, women, 30 year olds, 50 year olds--everyone--needs to speak to their doctor about their risk factors and establish a timeline for getting screened. Now for the pictures! Head on over to the "Information" tab to check out everyone who dressed in blue to support Dad this year. Forgot to send a picture? It's not too late! Feel free to send in last minute photos and I'll get you added.
Oh, and don't forget to say a little prayer for Dad this weekend. He meets with the radiologist this Monday to determine how to proceed with radiation therapy. We'll post an update after the appointment. Meanwhile, Happy Dress in Blue Day! Now get your rear in gear and get screened!
Oh, and don't forget to say a little prayer for Dad this weekend. He meets with the radiologist this Monday to determine how to proceed with radiation therapy. We'll post an update after the appointment. Meanwhile, Happy Dress in Blue Day! Now get your rear in gear and get screened!
Hey Everyone! Head on Over to the "information" tab to learn more about national dress in blue day, March 6, 2015!
Plan "E" February 10, 2015
Hey everyone. There's lots to go over after today's appointment with Dr. Shureiqi so I'll get right to it. But before I do, Dad wanted me to let you all know that cancer is a pain in his ass. Ok.
Dad had another set of CT Scans yesterday and reviewed the results with his oncologist today. The tumors are growing. He now has five tumors in his lungs, up from three. The liver tumors are growing as well which is the bigger concern at this point. Dr. Shureiqi feels that the chemotherapy alone is no longer working at this time. He will still be receiving chemo as a treatment; however, he will undergo a new treatment that will target the liver tumors specifically. The new chemotherapy regimen will be Irenotecan, 5-FU, and the new drug, Zaltrap. Zaltrap will replace Avastin and he is off of Oxilaplatin altogether due to the severe reactions he had to it. So to recap, the chemotherapy will still take place as a means of stopping the lung tumors and any new cancer cells that may be trying to grow elsewhere in the body. The new treatment (described a bit below) will target the liver tumors specifically. Also, he will now be on blood thinners from here on out since he developed the clot in his lung. This is pretty standard as cancer cells can release waste that can coagulate (clot) your blood. He'll continue to have the stomach injections, twice a day, for the remainder of the month. Then he will, mercifully, switch to pill form. Ok, moving on.
In the next few weeks, Dad will be meeting with a Radiologist (and other doctors in the Radiology department) to discuss a new option for treating his liver tumors. We don't know much as Dr. Shureiqi wanted the information to come directly from the source, but what we do know is that Dad would be receiving irradiated pellets that will be shot straight into the liver tumors. We do not know more than that at this time. We are unsure how exactly the treatment works, how many tumors will be injected, if it's a one time treatment or if it's repetitive, etc. All of that we will find out at the radiology appointment. We'll let you all know when that is scheduled. Dad will also need to consider the side effects of that treatment before proceeding. Again, that is information we currently do not know.
Tumor markers weren't discussed during this appointment as they don't really matter at this point. We know they are increasing because the tumors are growing. The CT scan is a better indicator of this than the blood work. If we learn of new numbers, we'll let you guys know.
If you are keeping track, you'll remember that Dad's chemo was cut short four weeks ago due to a reaction to the Oxilaplatin. Two weeks ago, the same thing happened. The doctor elected to hold chemo for this week as well to allow all of the Avastin (which has been replaced by Zaltrap) to leave his system. This is essentially six weeks without a full chemotherapy cycle. Dad asked Dr. Shureiqi if he could afford to go that long and the doctor assured him that the tumors do not grow in days, rather in months. He also let Dad know that his liver is not at that "critical stage" yet where some hard decisions will have to be made. At this point we still have trial options so we don't want you to be discouraged (or discouraging to Dad--keep it positive, remember!) but we do want to be realistic about where we are in this fight.
Dad's in good spirits all things considered and has been facing each of these decisions head on. He does better than we do sometimes! But we're all hanging in there and will do what we have to do to make sure Dad can do what he needs to do. He's a beast! Once we have more information, we'll of course post it here. In the mean time, everybody have an awesome week. Dad said (in the silliest voice you can imagine) that he "lubs everyone so bery much." Weirdo.
Dad had another set of CT Scans yesterday and reviewed the results with his oncologist today. The tumors are growing. He now has five tumors in his lungs, up from three. The liver tumors are growing as well which is the bigger concern at this point. Dr. Shureiqi feels that the chemotherapy alone is no longer working at this time. He will still be receiving chemo as a treatment; however, he will undergo a new treatment that will target the liver tumors specifically. The new chemotherapy regimen will be Irenotecan, 5-FU, and the new drug, Zaltrap. Zaltrap will replace Avastin and he is off of Oxilaplatin altogether due to the severe reactions he had to it. So to recap, the chemotherapy will still take place as a means of stopping the lung tumors and any new cancer cells that may be trying to grow elsewhere in the body. The new treatment (described a bit below) will target the liver tumors specifically. Also, he will now be on blood thinners from here on out since he developed the clot in his lung. This is pretty standard as cancer cells can release waste that can coagulate (clot) your blood. He'll continue to have the stomach injections, twice a day, for the remainder of the month. Then he will, mercifully, switch to pill form. Ok, moving on.
In the next few weeks, Dad will be meeting with a Radiologist (and other doctors in the Radiology department) to discuss a new option for treating his liver tumors. We don't know much as Dr. Shureiqi wanted the information to come directly from the source, but what we do know is that Dad would be receiving irradiated pellets that will be shot straight into the liver tumors. We do not know more than that at this time. We are unsure how exactly the treatment works, how many tumors will be injected, if it's a one time treatment or if it's repetitive, etc. All of that we will find out at the radiology appointment. We'll let you all know when that is scheduled. Dad will also need to consider the side effects of that treatment before proceeding. Again, that is information we currently do not know.
Tumor markers weren't discussed during this appointment as they don't really matter at this point. We know they are increasing because the tumors are growing. The CT scan is a better indicator of this than the blood work. If we learn of new numbers, we'll let you guys know.
If you are keeping track, you'll remember that Dad's chemo was cut short four weeks ago due to a reaction to the Oxilaplatin. Two weeks ago, the same thing happened. The doctor elected to hold chemo for this week as well to allow all of the Avastin (which has been replaced by Zaltrap) to leave his system. This is essentially six weeks without a full chemotherapy cycle. Dad asked Dr. Shureiqi if he could afford to go that long and the doctor assured him that the tumors do not grow in days, rather in months. He also let Dad know that his liver is not at that "critical stage" yet where some hard decisions will have to be made. At this point we still have trial options so we don't want you to be discouraged (or discouraging to Dad--keep it positive, remember!) but we do want to be realistic about where we are in this fight.
Dad's in good spirits all things considered and has been facing each of these decisions head on. He does better than we do sometimes! But we're all hanging in there and will do what we have to do to make sure Dad can do what he needs to do. He's a beast! Once we have more information, we'll of course post it here. In the mean time, everybody have an awesome week. Dad said (in the silliest voice you can imagine) that he "lubs everyone so bery much." Weirdo.
Gone, baby, gone February 5, 2015
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Dad was released from the hospital this afternoon. He is doing much better. He said he couldn't exactly give us two thumbs up, so he threw up one and a half. Considering how bad he was feeling, we'll take it.
He has to have two injections of blood thinners in his stomach everyday for the next month. After that he will have one a day until tests show the blood clot is cleared. He has pain medication should he need it and must do breathing exercises daily to prevent pneumonia. Other than that, he has no restrictions. He will see Dr. Shureiqi on Tuesday where we will learn more about his new chemo medications. We'll update you guys once we know more. Dad wants me to thank you all for your texts and calls over the last couple of days. He really appreciates all the love and support! Hopefully he'll be feeling two thumbs up again soon! |
back to the emergency center February 4, 2015
Around 3:00 a.m. this morning, Dad was taken back to the emergency center. He woke Mom and told her he was experiencing trouble breathing and a lot of chest and abdominal pain. They went straight to the M.D. Anderson Emergency Center where several tests were run. Here is what we know.
1. Originally Dad was diagnosed with double pneumonia; however, the type of pain he was experiencing didn't match that diagnosis so Dr. Shureiqi knew that his attending physician Dr. Campangna (who was Dad's doctor the last time he was admitted) would order more tests to nail down a diagnosis.
2. Initially they were going to give Dad pain medicine, but his blood pressure dropped to 76/50 after they drew blood. No pain medicine could be administered until his BP was under control. It finally did go back up to 121/81.
3. He received pain medications and IV antibiotics.
4. The CT scan did not show enough fluid to support the pneumonia diagnosis. Upon further examination, Dr. Campangna diagnosed Dad as having a blood clot in his right lung. She said that cancer patients are prone to clots. This, plus the pain and difficulty breathing Dad was experiencing led her to this diagnosis. This was confirmed with the Hematologist, Radiologist, and Pulmonologist.
6. The tumors in his lungs are not large enough to be the cause of these particular problems.
7. Dad has also received a shot of blood thinners (administered in the stomach) in order to begin breaking down the clot.
8. As a precaution, they did an ultrasound of his legs to ensure he didn't have any clots in them. That test came back negative.
9. He is still in a lot of pain and has difficulty taking anything more than a shallow breath. This is a concern because if he does not begin breathing deeply he will develop pneumonia. He must do breathing exercises every waking hour to maintain lung function.
10. His liver levels are normal (for Dad anyway) and are not a concern at this time.
11. Long term treatment for his blood clot will include a daily injection of blood thinners into the stomach for 6 months. They are trying to arrange for Mom to give these daily shots at home. More on that once we know. They could re-scan sooner than six months and stop or continue treatment as necessary.
12. The clot moving does not appear to be a concern at this time. This could potentially be due to the clot's location.
Here is what we don't know:
1. Any new information about the biopsy results. We should know that on Tuesday unless something changes.
2. Any new information about tumor growth. That was not the goal of these scans.
3. Whether or not he will get chemotherapy as scheduled on Tuesday. Dr. Shureiqi will make that call at Dad's next appointment on the February 10.
4. Whether or not he will have the stress test his cardiologist ordered on February 9.
5. Exactly how long it will take for the blood clot to break up.
6. Exactly what caused it, but again chemo patients are prone to getting them.
He will be in the hospital for at least the next day, but that is subject to change as more tests may be run. He is in room #1946. You are all welcome to text; however, please refrain from calling as he gets winded very easily and the coughing causes further chest pain. If there are any additional updates I will post them here. I have also added this month's and next month's calendars under the "Treatment Schedule" tab. Thanks for the prayers and well wishes. We love you all.
1. Originally Dad was diagnosed with double pneumonia; however, the type of pain he was experiencing didn't match that diagnosis so Dr. Shureiqi knew that his attending physician Dr. Campangna (who was Dad's doctor the last time he was admitted) would order more tests to nail down a diagnosis.
2. Initially they were going to give Dad pain medicine, but his blood pressure dropped to 76/50 after they drew blood. No pain medicine could be administered until his BP was under control. It finally did go back up to 121/81.
3. He received pain medications and IV antibiotics.
4. The CT scan did not show enough fluid to support the pneumonia diagnosis. Upon further examination, Dr. Campangna diagnosed Dad as having a blood clot in his right lung. She said that cancer patients are prone to clots. This, plus the pain and difficulty breathing Dad was experiencing led her to this diagnosis. This was confirmed with the Hematologist, Radiologist, and Pulmonologist.
6. The tumors in his lungs are not large enough to be the cause of these particular problems.
7. Dad has also received a shot of blood thinners (administered in the stomach) in order to begin breaking down the clot.
8. As a precaution, they did an ultrasound of his legs to ensure he didn't have any clots in them. That test came back negative.
9. He is still in a lot of pain and has difficulty taking anything more than a shallow breath. This is a concern because if he does not begin breathing deeply he will develop pneumonia. He must do breathing exercises every waking hour to maintain lung function.
10. His liver levels are normal (for Dad anyway) and are not a concern at this time.
11. Long term treatment for his blood clot will include a daily injection of blood thinners into the stomach for 6 months. They are trying to arrange for Mom to give these daily shots at home. More on that once we know. They could re-scan sooner than six months and stop or continue treatment as necessary.
12. The clot moving does not appear to be a concern at this time. This could potentially be due to the clot's location.
Here is what we don't know:
1. Any new information about the biopsy results. We should know that on Tuesday unless something changes.
2. Any new information about tumor growth. That was not the goal of these scans.
3. Whether or not he will get chemotherapy as scheduled on Tuesday. Dr. Shureiqi will make that call at Dad's next appointment on the February 10.
4. Whether or not he will have the stress test his cardiologist ordered on February 9.
5. Exactly how long it will take for the blood clot to break up.
6. Exactly what caused it, but again chemo patients are prone to getting them.
He will be in the hospital for at least the next day, but that is subject to change as more tests may be run. He is in room #1946. You are all welcome to text; however, please refrain from calling as he gets winded very easily and the coughing causes further chest pain. If there are any additional updates I will post them here. I have also added this month's and next month's calendars under the "Treatment Schedule" tab. Thanks for the prayers and well wishes. We love you all.
Discharged jAnuary 28, 2015
Dad was released from the hospital this morning around 10:00 a.m. Here's the latest:
1. Dad spoke with his oncologist and will follow up with him in two weeks to start a new chemo regimen. By then we will have the information from the biopsy which will be used to formulate a new plan of treatment.
2. Dr. Shureiqi is considering another set of scans in two weeks to establish a baseline.
3. Dad will see a cardiologist to ensure there was no damage done to his heart. We know it was not a heart attack, but Dr. Shureiqi wants to be sure there was no residual damage from the episode. Dad will also undergo a stress test.
4. Dr. Shureiqi noticed that there was a little bit of fluid in Dad's lungs. He required him to have at least one round of an antibiotics before leaving the hospital this morning. Dad will be on the remaining antibiotics for the next several days.
5. Dr. Shureiqi gave Dad the okay to return home this afternoon and Mom will watch to make sure he doesn't have any additional reactions.
6. Dad's skin sensitivity (the painful, needle-like sensation) has decreased and his vision is no longer blurry.
7. If anything changes or he relapses, we will post back here.
1. Dad spoke with his oncologist and will follow up with him in two weeks to start a new chemo regimen. By then we will have the information from the biopsy which will be used to formulate a new plan of treatment.
2. Dr. Shureiqi is considering another set of scans in two weeks to establish a baseline.
3. Dad will see a cardiologist to ensure there was no damage done to his heart. We know it was not a heart attack, but Dr. Shureiqi wants to be sure there was no residual damage from the episode. Dad will also undergo a stress test.
4. Dr. Shureiqi noticed that there was a little bit of fluid in Dad's lungs. He required him to have at least one round of an antibiotics before leaving the hospital this morning. Dad will be on the remaining antibiotics for the next several days.
5. Dr. Shureiqi gave Dad the okay to return home this afternoon and Mom will watch to make sure he doesn't have any additional reactions.
6. Dad's skin sensitivity (the painful, needle-like sensation) has decreased and his vision is no longer blurry.
7. If anything changes or he relapses, we will post back here.
Hospitalized January 27, 2015
I'll post information as we find out more.
UPDATE 10:00 p.m. (original post below)
1. It was not a heart attack. THANK GOD. It was a reaction to the chemo medications that presented itself with all the symptoms of one.
2. They are ordering more blood work to test his levels again, just to make sure everything is returning to normal. He will be tested again tomorrow. Once his blood work comes back normal twice in a row, he can go home.
3. He will be moving to a room soon, they just want to finish up with the last bit of testing first.
4. Because he was on so many pre-meds, plus all of the medication given during and after his attack, they want to make sure he doesn't have any other reactions to anything.
5. I spoke with Dad and he is doing much better, although he sounds exhausted. He is still in some discomfort but is able to rest now that he can breathe again. He said every time he took a breath, it felt like his chest wouldn't inflate, like he couldn't get air in. It was pretty scary stuff. Mom is also able to hold his hand now. Before, she couldn't touch him because his skin hurt so bad (Oxilaplatin is a neurotoxin). His muscles were also jumping and his eyes were blurred for a bit. All that seems to be subsiding now.
6. I'll post an update in the morning with any overnight developments. Hopefully this was the worst of it and he does not experience any other reactions.
7. Thank you for all of your prayers and well wishes. We really appreciate it. Thank you also to those of you who were helping us spread the word (Aunt Candy and Mee Mee) to family. It was a little overwhelming and we didn't want to miss anyone. Mom is able to receive text messages (although she may not reply) and you are more than welcome to leave love for Dad in his guestbook. Mom is sharing all of them with Dad.
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UPDATE 8:12 p.m. (original post below)
1. Dad is settled in the Emergency Center now. His blood pressure is coming down. His skin sensitivity is calming some as well.
2. He is still waiting for the chest X-ray to be done.
3. Mom said he is resting. He was extremely tired after tonight's episode (happened around 6:20 p.m.) so she is trying to let him rest as much as possible so his little body can recover.
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7:45 p.m.
Hey everyone. I'm posting an update as Dad was hospitalized tonight due to a reaction from his chemo. I'm just doing bullet points for now and will update more once we have new information.
1. Liver biopsy went well, but we don't have the tumor genetically sequenced yet so we don't have enough information to change treatments. The plan is to stay the course for now.
2. Dad went for an appointment with Dr. Shureiqi and chemotherapy today. Dr. Shureiqi decided to continue the Oxilaplatin as long as Dad's body could handle it (again, waiting on liver biopsy results) but that he would slow the drip down from 2 hours to 6 hours since he reacted so strongly the last time.
3. Dad had a lot of additional pre-meds in order to help curb the side effects he experienced last time. However, he began to have a very bad reaction to the Oxilaplatin. His blood pressure skyrocketed, he felt a lot of pain in his chest, and he could not breathe.
4. Five ATC (chemo clinic) nurses attended to him. They gave him nitroglycerin, epinephrine, and oxygen. They were able to get his pain level down from a 9 to about a 5 and he felt like he could breathe again.
5. Dr. Shureiqi ordered Dad be moved to the emergency center as they are better equipped to handle the situation.
6. Dr. Shureiqi visited Dad. He ordered an EKG which has been be completed but we don't know the results yet. He also ordered a chest X-Ray. He was given blood pressure medicine (Metoprolol). They ordered additional bloodwork. He also has a nitro patch.
7. Dr. Shureiqi doesn't think it's his heart, but he is not taking any chances until they have the test results.
8. He has been admitted to the hospital (M.D. Anderson) for at least the next 24 hours. Dr. Shureiqi will meet back with them in the morning to check on his progress. He will also begin working on a plan for Dad's new treatment as he can't be on Oxilaplatin anymore.
9. His skin was very sensitive while they were trying to get him transferred to the emergency center. This is a side effect of the Oxilaplatin and is very painful.
UPDATE 10:00 p.m. (original post below)
1. It was not a heart attack. THANK GOD. It was a reaction to the chemo medications that presented itself with all the symptoms of one.
2. They are ordering more blood work to test his levels again, just to make sure everything is returning to normal. He will be tested again tomorrow. Once his blood work comes back normal twice in a row, he can go home.
3. He will be moving to a room soon, they just want to finish up with the last bit of testing first.
4. Because he was on so many pre-meds, plus all of the medication given during and after his attack, they want to make sure he doesn't have any other reactions to anything.
5. I spoke with Dad and he is doing much better, although he sounds exhausted. He is still in some discomfort but is able to rest now that he can breathe again. He said every time he took a breath, it felt like his chest wouldn't inflate, like he couldn't get air in. It was pretty scary stuff. Mom is also able to hold his hand now. Before, she couldn't touch him because his skin hurt so bad (Oxilaplatin is a neurotoxin). His muscles were also jumping and his eyes were blurred for a bit. All that seems to be subsiding now.
6. I'll post an update in the morning with any overnight developments. Hopefully this was the worst of it and he does not experience any other reactions.
7. Thank you for all of your prayers and well wishes. We really appreciate it. Thank you also to those of you who were helping us spread the word (Aunt Candy and Mee Mee) to family. It was a little overwhelming and we didn't want to miss anyone. Mom is able to receive text messages (although she may not reply) and you are more than welcome to leave love for Dad in his guestbook. Mom is sharing all of them with Dad.
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UPDATE 8:12 p.m. (original post below)
1. Dad is settled in the Emergency Center now. His blood pressure is coming down. His skin sensitivity is calming some as well.
2. He is still waiting for the chest X-ray to be done.
3. Mom said he is resting. He was extremely tired after tonight's episode (happened around 6:20 p.m.) so she is trying to let him rest as much as possible so his little body can recover.
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7:45 p.m.
Hey everyone. I'm posting an update as Dad was hospitalized tonight due to a reaction from his chemo. I'm just doing bullet points for now and will update more once we have new information.
1. Liver biopsy went well, but we don't have the tumor genetically sequenced yet so we don't have enough information to change treatments. The plan is to stay the course for now.
2. Dad went for an appointment with Dr. Shureiqi and chemotherapy today. Dr. Shureiqi decided to continue the Oxilaplatin as long as Dad's body could handle it (again, waiting on liver biopsy results) but that he would slow the drip down from 2 hours to 6 hours since he reacted so strongly the last time.
3. Dad had a lot of additional pre-meds in order to help curb the side effects he experienced last time. However, he began to have a very bad reaction to the Oxilaplatin. His blood pressure skyrocketed, he felt a lot of pain in his chest, and he could not breathe.
4. Five ATC (chemo clinic) nurses attended to him. They gave him nitroglycerin, epinephrine, and oxygen. They were able to get his pain level down from a 9 to about a 5 and he felt like he could breathe again.
5. Dr. Shureiqi ordered Dad be moved to the emergency center as they are better equipped to handle the situation.
6. Dr. Shureiqi visited Dad. He ordered an EKG which has been be completed but we don't know the results yet. He also ordered a chest X-Ray. He was given blood pressure medicine (Metoprolol). They ordered additional bloodwork. He also has a nitro patch.
7. Dr. Shureiqi doesn't think it's his heart, but he is not taking any chances until they have the test results.
8. He has been admitted to the hospital (M.D. Anderson) for at least the next 24 hours. Dr. Shureiqi will meet back with them in the morning to check on his progress. He will also begin working on a plan for Dad's new treatment as he can't be on Oxilaplatin anymore.
9. His skin was very sensitive while they were trying to get him transferred to the emergency center. This is a side effect of the Oxilaplatin and is very painful.
2015 January 2, 2015
Hey everyone. I hope you had a Happy New Year. I'm sorry I've been a little late to update but having a baby keeps you busy. Newborns are no joke y'all! Anyway I do want to provide you guys with the latest on Dad. It's not awesome and not really the way we wanted to start out the new year, but he's determined to fight so we are too.
I'll be brief; the latest CT Scans show that the tumors in his liver and lungs are growing. Dr. Shureiqi wasn't specific as to whether or not all or some were growing, but we know there is growth in at least some. He has been taken off of Irenotecan and put back on Oxilaplatin (the original chemo) in an effort to regain control of the tumor growth. His tumor markers (CEA levels) have jumped from 62.5 to 128. There are other options if the Oxilaplatin is not as effective as it was the first time around. They also must be mindful of the side effects as the Oxilaplatin ("snake juice" as Daddy calls it) caused the neuropathy in his feet. Dr. Shureiqi is scheduling a liver biopsy to see if he can better determine why the tumors are still growing despite chemotherapy. Dad will also be participating in a genetic trial where they will pull hundreds genetic markers from his biopsy and blood which could potentially help Dad, but will also be used in research to help others. The biopsy will be conducted before his next treatment but is not currently scheduled. We'll let you know once we find out a date.
Certainly Dad welcomes your phone calls and texts. He is also asking for your prayers that the biopsy sheds some light on a new course of treatment. As a side note, I know you all know this but PLEASE do not visit if you are sick or have been exposed to sickness. The rate of flu this year is very high and now that he is back on this very strong chemotherapy course, we can not take any chances of him getting sick. We love y'all and will update you soon on his progress. In the mean time, check out Paw Paw's newest little grandbaby.
I'll be brief; the latest CT Scans show that the tumors in his liver and lungs are growing. Dr. Shureiqi wasn't specific as to whether or not all or some were growing, but we know there is growth in at least some. He has been taken off of Irenotecan and put back on Oxilaplatin (the original chemo) in an effort to regain control of the tumor growth. His tumor markers (CEA levels) have jumped from 62.5 to 128. There are other options if the Oxilaplatin is not as effective as it was the first time around. They also must be mindful of the side effects as the Oxilaplatin ("snake juice" as Daddy calls it) caused the neuropathy in his feet. Dr. Shureiqi is scheduling a liver biopsy to see if he can better determine why the tumors are still growing despite chemotherapy. Dad will also be participating in a genetic trial where they will pull hundreds genetic markers from his biopsy and blood which could potentially help Dad, but will also be used in research to help others. The biopsy will be conducted before his next treatment but is not currently scheduled. We'll let you know once we find out a date.
Certainly Dad welcomes your phone calls and texts. He is also asking for your prayers that the biopsy sheds some light on a new course of treatment. As a side note, I know you all know this but PLEASE do not visit if you are sick or have been exposed to sickness. The rate of flu this year is very high and now that he is back on this very strong chemotherapy course, we can not take any chances of him getting sick. We love y'all and will update you soon on his progress. In the mean time, check out Paw Paw's newest little grandbaby.
What a difference a year makes November 13, 2014
We made it! Today officially marks Dad's one year Cancer-versary! This was the day we first met with Dr. Shureiqi at M.D. Anderson, learned of Dad's official diagnosis and the severity of the disease, and began planning for treatment. It has honestly been one of our worst and, surprisingly, one of our best years. Our family has definitely experienced some dark days throughout these last three hundred and sixty-five. However, we are now painfully aware that nothing is promised and have taken this lesson to heart. We have spent this year making sure we all know just what we mean to one another. Cancer is a big price to pay for a bit of perspective and we are certainly not going to squander it.
Dad just completed his 25th cycle today. Tuesday was rough, but he perked right up on Wednesday and by the time pump disconnection rolled around today, he was all smiles! We decided to upload a little thank-you video from Dad. You can click on it below.
Dad just completed his 25th cycle today. Tuesday was rough, but he perked right up on Wednesday and by the time pump disconnection rolled around today, he was all smiles! We decided to upload a little thank-you video from Dad. You can click on it below.
In the mean time, he's just living life. Spending time with his friends and family and fishing too much are some of his favorite past times. We are honestly so grateful that not only is he still alive and kickin' but that he feels well enough most days to enjoy himself. We should all take a cue from this guy's attitude. I think it's his secret special cancer fighting weapon! Enjoy some recent photos of Dad below. And make sure you leave you leave some happy thoughts for him in his guest book.
bACK ON THE oLD jUICE nOVEMBER 4, 2014
Holy smokes have I been slacking! Sorry for the almost 2 month delay in updates...things got busy! I'm sure most of you know about Dad's chemo adjustments by now, but I did want to go ahead and post a quick update just in case you were out of the loop. A few cycles ago, Dad's CEA numbers--tumor markers--were climbing (see previous post) on his new, easier maintenance regimen. We learned two of the tumors were growing, but not enough to immediately warrant him going back on his old regimen. Dr. Shureiqi agreed to continue the course for a little longer. The doctor gave Dad two more cycles of the lowered chemotherapy and then ordered retests. Dad's CEA numbers were up to 80 this time. That doesn't sound high compared to where he's been, but it is enough to signal that the maintenance chemo is not working and it was time for a change. Dr. Shureiqi placed Dad back on the Irinotecan, Avastin, and 5-FU. The Irinotecan causes Dad to suffer stomach problems for a few days after receiving it so he wasn't super thrilled to be back on it, but he agrees that he doesn't have so much of a choice in the matter.
Our main concerns now are the long term effects of being on this particular chemo regimen. Dr. Shureiqi does have patients who have been on this combination of chemotherapy for years. Of course, we don't have a lot of options as far as long term treatment goes, so it doesn't do us much good to dwell on the what-ifs. Plus there are always new treatment options in development. All we do now is stay the course and monitor his major organ outputs, which are doing great. Dad will meet with Dr. Shureiqi again soon and he will determine when his next CT scan will be. He wants to give Dad a few weeks to respond to the increased chemo before he does though. So now we wait!
In the mean time, Dad's been keeping himself plenty busy. Between pecan-picking, fishing trips with his brothers and buddies, and grandbabies, he's got lots to take his mind off of things. Oh and Mom hasn't let him forget about renovating the house either! His next chemo cycle starts on 11/11/14, so unless I go into labor before then, we'll post another update. We'll also be posting a little something special to celebrate Dad's one year anniversary post diagnosis! I'll also be putting up his new treatment calendar for November once all the dates are posted by the hospital. In the mean time we hope every one is having a Happy Fall! Love you!!
Our main concerns now are the long term effects of being on this particular chemo regimen. Dr. Shureiqi does have patients who have been on this combination of chemotherapy for years. Of course, we don't have a lot of options as far as long term treatment goes, so it doesn't do us much good to dwell on the what-ifs. Plus there are always new treatment options in development. All we do now is stay the course and monitor his major organ outputs, which are doing great. Dad will meet with Dr. Shureiqi again soon and he will determine when his next CT scan will be. He wants to give Dad a few weeks to respond to the increased chemo before he does though. So now we wait!
In the mean time, Dad's been keeping himself plenty busy. Between pecan-picking, fishing trips with his brothers and buddies, and grandbabies, he's got lots to take his mind off of things. Oh and Mom hasn't let him forget about renovating the house either! His next chemo cycle starts on 11/11/14, so unless I go into labor before then, we'll post another update. We'll also be posting a little something special to celebrate Dad's one year anniversary post diagnosis! I'll also be putting up his new treatment calendar for November once all the dates are posted by the hospital. In the mean time we hope every one is having a Happy Fall! Love you!!
Bump in the road September 12, 2014
Soaking up some rays and some waves!
Well, I'll get right to it. Dad got a bit of not-so-awesome news on Tuesday when he met with Dr. Shureiqi. He was told that his tumor markers had doubled--to around 40--which is the first time they have increased since beginning chemotherapy. That came as a bit of a shock as Dad has been on his maintenance regimen for a couple of months now. We knew his tumors may never completely go away, but we did think they had at least stopped growing. I guess with cancer though, you can never really be sure of anything! Dr. Shureiqi immediately cancelled Dad's chemotherapy for this week (another first) and ordered a CT Scan instead. He said the increase in tumor markers could mean a few different things so he wanted to see exactly what was going on in there. He called Dad today with the results.
Dad has a small tumor in his lungs that has grown to 3mm. This is small and the growth was slow, but the doctor still pointed it out since it had gotten bigger. It's also a little surprising because we thought his lungs were clear. There is one liver tumor in particular that grew from 16mm to 18mm, again slow growth, but growing just the same. Dr. Shureiqi gave Dad a couple of options. The first would be to stay on the maintenance regimen for a little while longer to see if the new growth plateaus. The second is to go back on Irinotecan to see if it can reverse some of the new growth. There are potential drawbacks and upsides to each course of action. Mom and Dad are discussing options this weekend and will meet with Dr. Shureiqi this Tuesday to see what he has to add. We'll know more then and I will make sure to post an update with Dad's decision.
In other news, Dad met with his neurologist Dr. Chen to check up on his neuropathy. There isn't much to report there other than he is to continue taking his current medication and start taking additional vitamin D. He'll go back to see her in a few months if nothing changes with his feet.
Since beginning treatment, we haven't really had any set backs or bad news. Well, hearing you have Stage IV Colon Cancer is pretty bad news, but beyond that he seemed to be improving every week. It was only a matter of time before we hit a little bump in the road. Too bad it was the week of his 53rd birthday! Oh well, I guess every day can't be a day at the beach. Who am I kidding...look at this guy!
If you have time tomorrow, make sure you call or text this handsome devil and wish him a very Happy Birthday! Also, I've updated the "Treatment Schedule" tab to include the new September calendar. There isn't much there yet though until we meet with Dr. Shureiqi again. And just so you all start thinking about it, if Dad restarts the Irinotecan, we may request volunteer drivers again as he doesn't feel well enough to drive with that medication. Not sure if he's going that route yet, but I wanted to throw that out there just in case.
We hope everyone has a fabulous weekend! Until Tuesday!
Dad has a small tumor in his lungs that has grown to 3mm. This is small and the growth was slow, but the doctor still pointed it out since it had gotten bigger. It's also a little surprising because we thought his lungs were clear. There is one liver tumor in particular that grew from 16mm to 18mm, again slow growth, but growing just the same. Dr. Shureiqi gave Dad a couple of options. The first would be to stay on the maintenance regimen for a little while longer to see if the new growth plateaus. The second is to go back on Irinotecan to see if it can reverse some of the new growth. There are potential drawbacks and upsides to each course of action. Mom and Dad are discussing options this weekend and will meet with Dr. Shureiqi this Tuesday to see what he has to add. We'll know more then and I will make sure to post an update with Dad's decision.
In other news, Dad met with his neurologist Dr. Chen to check up on his neuropathy. There isn't much to report there other than he is to continue taking his current medication and start taking additional vitamin D. He'll go back to see her in a few months if nothing changes with his feet.
Since beginning treatment, we haven't really had any set backs or bad news. Well, hearing you have Stage IV Colon Cancer is pretty bad news, but beyond that he seemed to be improving every week. It was only a matter of time before we hit a little bump in the road. Too bad it was the week of his 53rd birthday! Oh well, I guess every day can't be a day at the beach. Who am I kidding...look at this guy!
If you have time tomorrow, make sure you call or text this handsome devil and wish him a very Happy Birthday! Also, I've updated the "Treatment Schedule" tab to include the new September calendar. There isn't much there yet though until we meet with Dr. Shureiqi again. And just so you all start thinking about it, if Dad restarts the Irinotecan, we may request volunteer drivers again as he doesn't feel well enough to drive with that medication. Not sure if he's going that route yet, but I wanted to throw that out there just in case.
We hope everyone has a fabulous weekend! Until Tuesday!
Bad boys, bad boys August 5, 2014
Chilling in the hallway. "Hallway Space #10"
Hey Everyone! I just wanted to give you all an update about Dad's 18th cycle. Dad was pretty stoked about his new maintenance chemo regimen and the freedom it would allow him. He would be able to drive himself to M.D. Anderson, then to my house, then back to get his pump off before heading home. He still needs to be in Houston while the pump is on in case there is an issue (see the "Never a Dull Moment" post), but he would be feeling a lot better and would have his truck in case he wanted to run the roads. Of course, none of that happened during his last cycle because he was in the E.R. instead. Sigh.
After his 17th cycle, he was suffering from a bit of a runny nose and some sinus pressure. The runny nose can be caused by the Avastin, so he didn't think too much of it. By the end of the cycle though, it was pretty apparent that it was due to a sinus infection. I'll spare the gory, snotty details of how we knew that. I told Mom so she could schedule an appointment with his doctor once he returned home, but the doctor was booked for a couple of days so Dad just decided to let it run it's course. And boy did it. He wasn't able to breathe out of his nose or sleep for more than a few minutes at a time, and he was suffering from terrible sinus pressure headaches. He couldn't take Sudafed or any medication like it due to the Avastin, he couldn't take any kind of Ibuprofen for pain because of the chemo, and he couldn't take any Tylenol to lower a fever without being given the go ahead from his oncologist. Poor guy was miserable.
He started running a fever on Monday which is a huge red flag for cancer patients. Once it was sustained long enough, Mom called his oncologist who said he needed to come in to the Emergency Center at M.D. Anderson. They got there around 6 p.m. and waited, and waited....and waited, until Dad was finally given a bed. In the hallway. Fancy, huh? He had a CT Scan of his sinuses as well as some chest X-rays. It was determined that it was just a really bad sinus infection, so they were able to give him Tylenol for the fever. He was also given a shot of Morphine for the pain (the good stuff for a normal person, but it doesn't really seem to have any effect on Dad.) He was also cleared to take a few doses of Sudafed just until his nose opened up. By the time he was discharged it was after 2:00 a.m.
Since Dad had bloodwork at 8:00 a.m. on Tuesday--just six short hours after he was released from the E.R.--he and Mom decided to sleep in the hospital. They went back into the main building, up to the ATC (Ambulatory Treatment Center where he gets his chemo) and settled down in the recliners to catch some Zzzzzz's. Enter the police. Apparently, M.D. Anderson closes and you're not allowed to sleep there. So Mom and Dad got thrown out of the hospital. Well maybe it wasn't as dramatic as all that, but they did get the boot. The officer was nice enough to call the Emergency Center back and ask if Mom and Dad could sleep there since it's open 24 hours. Fortunately, they obliged. Dad was afraid he and Mom were going to be thrown in the clink for trespassing and his pregnant daughter would have to bail them out at 3 a.m. Good thing the officer was feeling generous. Daddy says he's too pretty to go to jail.
Fast forward a few hours later, Dad was able to receive chemo because his blood counts were okay. They were a little lower than normal due to the infection, but still high enough to undergo treatment. By the time they both made it to my house, they had been up for 36 hours. BUT Mom was craving Jimmy Changa's (her favorite Tex Mex Restaurant) so we loaded up and ate lunch instead of napping. Then we went to Target to register for baby stuff. FYI, you really shouldn't let Mom operate a registry scanner when she's super sleep deprived. She was beep happy, y'all!
All and all everything worked out okay despite the surprise emergency room trip. Dad did go home on Wednesday with Mom after they rested up. I think he was excited to sleep in his own bed since he could finally breathe again! We're going to try our new maintenance routine again on Tuesday, August 12, and as long as Dad sticks to the script and doesn't get sick, it should be much easier on everyone this time. But who really knows with that man.
I'll post another update once he wraps up treatment next week. I did update the treatment calender, but they are slow to post appointments this month so there aren't a ton of additions yet. We hope everyone is having a great last few weeks of summer! Love you all!
After his 17th cycle, he was suffering from a bit of a runny nose and some sinus pressure. The runny nose can be caused by the Avastin, so he didn't think too much of it. By the end of the cycle though, it was pretty apparent that it was due to a sinus infection. I'll spare the gory, snotty details of how we knew that. I told Mom so she could schedule an appointment with his doctor once he returned home, but the doctor was booked for a couple of days so Dad just decided to let it run it's course. And boy did it. He wasn't able to breathe out of his nose or sleep for more than a few minutes at a time, and he was suffering from terrible sinus pressure headaches. He couldn't take Sudafed or any medication like it due to the Avastin, he couldn't take any kind of Ibuprofen for pain because of the chemo, and he couldn't take any Tylenol to lower a fever without being given the go ahead from his oncologist. Poor guy was miserable.
He started running a fever on Monday which is a huge red flag for cancer patients. Once it was sustained long enough, Mom called his oncologist who said he needed to come in to the Emergency Center at M.D. Anderson. They got there around 6 p.m. and waited, and waited....and waited, until Dad was finally given a bed. In the hallway. Fancy, huh? He had a CT Scan of his sinuses as well as some chest X-rays. It was determined that it was just a really bad sinus infection, so they were able to give him Tylenol for the fever. He was also given a shot of Morphine for the pain (the good stuff for a normal person, but it doesn't really seem to have any effect on Dad.) He was also cleared to take a few doses of Sudafed just until his nose opened up. By the time he was discharged it was after 2:00 a.m.
Since Dad had bloodwork at 8:00 a.m. on Tuesday--just six short hours after he was released from the E.R.--he and Mom decided to sleep in the hospital. They went back into the main building, up to the ATC (Ambulatory Treatment Center where he gets his chemo) and settled down in the recliners to catch some Zzzzzz's. Enter the police. Apparently, M.D. Anderson closes and you're not allowed to sleep there. So Mom and Dad got thrown out of the hospital. Well maybe it wasn't as dramatic as all that, but they did get the boot. The officer was nice enough to call the Emergency Center back and ask if Mom and Dad could sleep there since it's open 24 hours. Fortunately, they obliged. Dad was afraid he and Mom were going to be thrown in the clink for trespassing and his pregnant daughter would have to bail them out at 3 a.m. Good thing the officer was feeling generous. Daddy says he's too pretty to go to jail.
Fast forward a few hours later, Dad was able to receive chemo because his blood counts were okay. They were a little lower than normal due to the infection, but still high enough to undergo treatment. By the time they both made it to my house, they had been up for 36 hours. BUT Mom was craving Jimmy Changa's (her favorite Tex Mex Restaurant) so we loaded up and ate lunch instead of napping. Then we went to Target to register for baby stuff. FYI, you really shouldn't let Mom operate a registry scanner when she's super sleep deprived. She was beep happy, y'all!
All and all everything worked out okay despite the surprise emergency room trip. Dad did go home on Wednesday with Mom after they rested up. I think he was excited to sleep in his own bed since he could finally breathe again! We're going to try our new maintenance routine again on Tuesday, August 12, and as long as Dad sticks to the script and doesn't get sick, it should be much easier on everyone this time. But who really knows with that man.
I'll post another update once he wraps up treatment next week. I did update the treatment calender, but they are slow to post appointments this month so there aren't a ton of additions yet. We hope everyone is having a great last few weeks of summer! Love you all!
Never a dull moment! July 20, 2014
Hey everybody! Dad just wrapped up his 17th chemo cycle and there is definitely lots to report, so I'll get right to it. Three months ago, Dr. Shureiqi mentioned that in three months he may reduce Dad's chemo. The term "reduce" could mean a lot of things in terms of chemotherapy--change in medication dosages, less time receiving intravenous chemo, less time on the pump, switching over to pill medications, etc.--so Dad was pretty psyched to find out what changes were going to be made. The news was great...and slightly less than ideal (not bad though!)
First of all his tumor markers are down to 15.7. They were just over 19. His numbers are so low now that we obviously didn't see the huge falls we did before, but percentage-wise, it's still an impressive decrease. His CT scan showed that there has been some additional shrinkage in his liver tumors. This is always good news. Dr. Shureiqi feels that this may be the best we can do for the tumors that remain. He says there could be some additional shrinkage, but that at this point, the tumors that are still intact will most likely stay that way. Currently, Dad is entering the maintenance phase of his chemotherapy. This simply means that he will be on chemotherapy for the rest of his life--barring some major medical breakthrough in the next few years--and that the goal now is to keep everything just as it is rather than focusing on decreasing.
Now for the change in chemo. Dad knew there was a pill form of chemotherapy he could potentially receive; however, since it was never really been an option before now, we hadn't learned any information about it. The problem with the pill Xeloda (Capecitabine) is that the side effects are pretty severe and shockingly common. It can cause the neuropathy in his feet to worsen and can cause the skin on his hands and feet to crack, bleed, and peel off. This would obviously be very painful and can lead to infections which his body does not need. The pill is also extremely regimented and Dad would have to be his own doctor. He would be on for so many days, then off for so many days and wouldn't be able to miss a dose. It would also be a twice a day, at-the-same-time-everyday pill, and can cause all sorts of problems if he misses or is even off an hour or two on the dose. This was all news to us.
He also learned that even though he could take a pill form of one drug, he would still need to take Avastin which (currently) is only available intravenously. So, basically, even though he'd be off the pump, he'd still be driving to Houston every two weeks for at least one of the drugs. Needless to say, Dad was a little bummed (no, actually really bummed) when he first heard the news. It was a bit of a shock that he'd be, at least for the foreseeable future, on the same two week schedule. But once he had a chance to process everything, and after Mom put him squarely in his place, he was ok. He decided that rather than risk the side effects of the pill--and since he would be driving to Houston anyway--he would just keep his current chemotherapy schedule. He's a trooper for sure! Dad did also ask about the possibility of his tumors growing back, and the doctor noted that he can always resume some of his medications to keep things in check. Dr. Shureiqi also pointed out that he's had patients on this two-drug regimen for YEARS. Good to know.
Side story! See that photo to the right? That's Dad, listening to Zydeco, aka his "Chanky Chank" music. At one point, Mom had to fuss at him for singing out loud in the waiting room! Really Dad?
Now for the good news! He is totally off Irinotecan! This was the drug that caused his upset stomach, most of his nausea, and his runny nose. His chemo is now going to take about an hour--when we started this whole process, poor guy was receiving chemo for 10 plus hours. He feels MUCH better even when he has the pump on because the medication he receives just prior isn't as severe. He'll now feel well enough to have freedom to drive himself (most days) to chemo, then to our house, then back for his own disconnect. I also imagine he'll be hitting up Bass Pro Shop and Garden World a lot more often too! So even though the new regimen is not ideal, it's still an improvement on his current situation. Plus I get to hang out with my Dad for a few days every couple of weeks so it's not bad at all!
And as if there wasn't enough excitement this week, Dad's pump leaked. It was a little scary because they don't hesitate to tell you just how bad these drugs are if they are not contained. Pregnant women and chemo patients should not, if possible, clean up spills so Dad and I were pretty useless. Fortunately Alex was home and was able to initiate clean-up while I called to let the hospital know we were on our way. Four hours at M.D. Anderson later and he had a new pump and new bag of drugs. Mom did actually accuse Dad of tampering with the pump in an effort to go home early. Dad swears this wasn't the case. I'll have to do a better job of watching him next time just to be sure.
I think that just about covers it in terms of chemo updates. There are just a few other things I wanted to mention though. First, his August calendar has been posted, but there is only one appointment scheduled so far so there are updates to come there. Second, I've added a short but informative blog post from the Colon Cancer Alliance about 5 chemotherapy myths. You can find that under the "Information" tab. And last, we just wanted to take a moment to say thank you to those of you who still follow this website in support of Dad. It means so much to him (and us!) to know that so many people are interested in seeing him beat this thing. So thank you again for all the ways that you've helped...the prayers, the kind words, the chauffeuring him to appointments, and the dropping by to say hi. It does not go unnoticed and we really appreciate it. We love you all and hope you're having a fantastic summer. Until next time, enjoy some more photos!
First of all his tumor markers are down to 15.7. They were just over 19. His numbers are so low now that we obviously didn't see the huge falls we did before, but percentage-wise, it's still an impressive decrease. His CT scan showed that there has been some additional shrinkage in his liver tumors. This is always good news. Dr. Shureiqi feels that this may be the best we can do for the tumors that remain. He says there could be some additional shrinkage, but that at this point, the tumors that are still intact will most likely stay that way. Currently, Dad is entering the maintenance phase of his chemotherapy. This simply means that he will be on chemotherapy for the rest of his life--barring some major medical breakthrough in the next few years--and that the goal now is to keep everything just as it is rather than focusing on decreasing.
Now for the change in chemo. Dad knew there was a pill form of chemotherapy he could potentially receive; however, since it was never really been an option before now, we hadn't learned any information about it. The problem with the pill Xeloda (Capecitabine) is that the side effects are pretty severe and shockingly common. It can cause the neuropathy in his feet to worsen and can cause the skin on his hands and feet to crack, bleed, and peel off. This would obviously be very painful and can lead to infections which his body does not need. The pill is also extremely regimented and Dad would have to be his own doctor. He would be on for so many days, then off for so many days and wouldn't be able to miss a dose. It would also be a twice a day, at-the-same-time-everyday pill, and can cause all sorts of problems if he misses or is even off an hour or two on the dose. This was all news to us.
He also learned that even though he could take a pill form of one drug, he would still need to take Avastin which (currently) is only available intravenously. So, basically, even though he'd be off the pump, he'd still be driving to Houston every two weeks for at least one of the drugs. Needless to say, Dad was a little bummed (no, actually really bummed) when he first heard the news. It was a bit of a shock that he'd be, at least for the foreseeable future, on the same two week schedule. But once he had a chance to process everything, and after Mom put him squarely in his place, he was ok. He decided that rather than risk the side effects of the pill--and since he would be driving to Houston anyway--he would just keep his current chemotherapy schedule. He's a trooper for sure! Dad did also ask about the possibility of his tumors growing back, and the doctor noted that he can always resume some of his medications to keep things in check. Dr. Shureiqi also pointed out that he's had patients on this two-drug regimen for YEARS. Good to know.
Side story! See that photo to the right? That's Dad, listening to Zydeco, aka his "Chanky Chank" music. At one point, Mom had to fuss at him for singing out loud in the waiting room! Really Dad?
Now for the good news! He is totally off Irinotecan! This was the drug that caused his upset stomach, most of his nausea, and his runny nose. His chemo is now going to take about an hour--when we started this whole process, poor guy was receiving chemo for 10 plus hours. He feels MUCH better even when he has the pump on because the medication he receives just prior isn't as severe. He'll now feel well enough to have freedom to drive himself (most days) to chemo, then to our house, then back for his own disconnect. I also imagine he'll be hitting up Bass Pro Shop and Garden World a lot more often too! So even though the new regimen is not ideal, it's still an improvement on his current situation. Plus I get to hang out with my Dad for a few days every couple of weeks so it's not bad at all!
And as if there wasn't enough excitement this week, Dad's pump leaked. It was a little scary because they don't hesitate to tell you just how bad these drugs are if they are not contained. Pregnant women and chemo patients should not, if possible, clean up spills so Dad and I were pretty useless. Fortunately Alex was home and was able to initiate clean-up while I called to let the hospital know we were on our way. Four hours at M.D. Anderson later and he had a new pump and new bag of drugs. Mom did actually accuse Dad of tampering with the pump in an effort to go home early. Dad swears this wasn't the case. I'll have to do a better job of watching him next time just to be sure.
I think that just about covers it in terms of chemo updates. There are just a few other things I wanted to mention though. First, his August calendar has been posted, but there is only one appointment scheduled so far so there are updates to come there. Second, I've added a short but informative blog post from the Colon Cancer Alliance about 5 chemotherapy myths. You can find that under the "Information" tab. And last, we just wanted to take a moment to say thank you to those of you who still follow this website in support of Dad. It means so much to him (and us!) to know that so many people are interested in seeing him beat this thing. So thank you again for all the ways that you've helped...the prayers, the kind words, the chauffeuring him to appointments, and the dropping by to say hi. It does not go unnoticed and we really appreciate it. We love you all and hope you're having a fantastic summer. Until next time, enjoy some more photos!
IPad time!
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Checking in for Dr. Shureiqi.
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This guy is totally at home.
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Lucky Number 16 July 2, 2014
Hey Everyone! We figured it was time for some good news. The Matt Family is certainly in need of that after this very difficult last few weeks. Dad is doing great! His tumor markers are down to 19.5. This is fantastic! He is still on bi-monthly treatments and just wrapped up his sixteenth cycle. He has an appointment with Dr. Shureiqi in two weeks and they will discuss changing his chemo up a bit. We don't know if this means shorter chemo times, new medicine, or less frequent chemo treatments. We'll know more once we meet with the doctor (who is super impressed by Dad's progress by the way.) Dad also has a CT Scan scheduled for the 14th of this month. We are actually pretty excited to see what his remaining liver tumors look like. We're pretty sure they're shrinking since his tumor markers are continuing to decline. We'll know more on that in two weeks too!
In the mean time, Dad is just busy being Dad. He's gone fishing with Colton, spent time in his garden, and continued remodeling the house. He and his brothers even played a round of golf in honor of Cary. He's caught a few 'Stros games and been on a few weekend getaways. He's making the most of life and we think that's a huge part of why he's done so well. He's always had a can't-complain-it-could-always-be-worse attitude, God bless him.
We also wanted to say thank you, thank you to Dad's Uncle Al for driving him to his last appointment. Dad enjoyed grabbing breakfast (at Waffle House...fancy!) and catching up with his uncle. Even though Al disappeared when it was time to pay the check. Those Escagnes...
Here are a few pictures of some of the things Dad has been up to this last month. They also had a huge celebration at M.D. Anderson for cancer fighters and survivors. You'll see a few of those pictures in the gallery. The rest are just Dad doing his thing. We love you all and will let you know how the CT Scan goes after his oncologist appointment on the 15th. All of his July appointments have been added under the "Treatment Schedule" tab for those of you who are keeping up. We hope everyone has a very Happy 4th of July!
In the mean time, Dad is just busy being Dad. He's gone fishing with Colton, spent time in his garden, and continued remodeling the house. He and his brothers even played a round of golf in honor of Cary. He's caught a few 'Stros games and been on a few weekend getaways. He's making the most of life and we think that's a huge part of why he's done so well. He's always had a can't-complain-it-could-always-be-worse attitude, God bless him.
We also wanted to say thank you, thank you to Dad's Uncle Al for driving him to his last appointment. Dad enjoyed grabbing breakfast (at Waffle House...fancy!) and catching up with his uncle. Even though Al disappeared when it was time to pay the check. Those Escagnes...
Here are a few pictures of some of the things Dad has been up to this last month. They also had a huge celebration at M.D. Anderson for cancer fighters and survivors. You'll see a few of those pictures in the gallery. The rest are just Dad doing his thing. We love you all and will let you know how the CT Scan goes after his oncologist appointment on the 15th. All of his July appointments have been added under the "Treatment Schedule" tab for those of you who are keeping up. We hope everyone has a very Happy 4th of July!
Pins and needles May 24, 2014
Hey y'all! Soooo it's been a little while since the last update (one month and two days...eek!) and I'm sorry for that. I'm totally going to blame it on being pregnant. Not that it's been a rough pregnancy or anything, but I won't get to use it as an excuse forever, so I think i'll capitalize on it!
Dad just wrapped up another chemo session, his second since the last update. Cancer wise, he's doing great. He met with his doctor who is pleased with how he's progressing so far. He is however dealing with a new and mildly troubling side effect. His feet have been tingling for the past two weeks or so. He experienced that same sensation while he was on Oxilaplatin. Dr. Shureiqi removed that medication for fear it would cause permanent nerve damage. After being off of it for a little while, Dad's feet and hands improved and the pins and needles stopped. However, the numbness and tingling in his feet are back and the doctor is a little concerned. He has been off of the Oxilaplatin and side-effect free (from that drug anyway) for a couple of months now. Dr. Shureiqi thought it was a little strange that it has all of the sudden shown up again. Fortunately Dr. Shureiqi is very proactive and has Dad meeting with a neurologist at the beginning of June.
Prior to his next chemo session, he will be meeting with Dr. Merry Chen who is one of the epilepsy specialists at M. D. Anderson. She'll conduct testing to see if this neuropathy (nerve damage) is a temporary side-effect of the chemotherapy or if it is permanent damage caused by Dad's treatment.
Dad just wrapped up another chemo session, his second since the last update. Cancer wise, he's doing great. He met with his doctor who is pleased with how he's progressing so far. He is however dealing with a new and mildly troubling side effect. His feet have been tingling for the past two weeks or so. He experienced that same sensation while he was on Oxilaplatin. Dr. Shureiqi removed that medication for fear it would cause permanent nerve damage. After being off of it for a little while, Dad's feet and hands improved and the pins and needles stopped. However, the numbness and tingling in his feet are back and the doctor is a little concerned. He has been off of the Oxilaplatin and side-effect free (from that drug anyway) for a couple of months now. Dr. Shureiqi thought it was a little strange that it has all of the sudden shown up again. Fortunately Dr. Shureiqi is very proactive and has Dad meeting with a neurologist at the beginning of June.
Prior to his next chemo session, he will be meeting with Dr. Merry Chen who is one of the epilepsy specialists at M. D. Anderson. She'll conduct testing to see if this neuropathy (nerve damage) is a temporary side-effect of the chemotherapy or if it is permanent damage caused by Dad's treatment.
Dr. Merry Chen
While his feet do sometimes keep him up at night (imagine that sensation when your foot "falls asleep" only it's all the time) it's not too painful. It's more a constant annoyance that gets worse at night or after he does a lot of walking. He is taking medication to help calm the nerves down so they don't tingle so badly. He's only been on it for a few days, so time will tell if it helps. We'll post more about this new side effect once he meets with Dr. Chen.
Even though he's got something new to deal with (hey, at least neuropathy won't kill him) he's doing pretty well. He's been catching up with friends and family and doing lots of work around the house and garden. You can't keep this guy down for long! Chemo seemed to be pretty easy on him this last week too. As you can tell, he makes himself feel right at home in the hospital!
Even though he's got something new to deal with (hey, at least neuropathy won't kill him) he's doing pretty well. He's been catching up with friends and family and doing lots of work around the house and garden. You can't keep this guy down for long! Chemo seemed to be pretty easy on him this last week too. As you can tell, he makes himself feel right at home in the hospital!
Enjoying the sunshine!
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Ready to get started!
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Settling in.
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Sawing major logs.
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Troy and Dad...Bromance!
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 Yummy Greek food!
He's been crabbing with Colton and fishing with his best bud, Troy. Mom has also put him to work on remodeling the house. He's been priming and painting like a mad man lately. Apparently cancer is not an excuse for being lazy in the Matt house!
I also heard he played a pretty amazing round of golf with his brothers the other day. This always seems to be a sore subject for a certain brother, so I won't go into too much detail, other than to say Dad had the best golf game of his life! Go, Dad! He's also been busy growing his hair back. It's patchy and little thin in places, but it's growing as fast as ever. It's pretty funny really, because they all but promised he would go completely bald. Not this guy apparently. We shouldn't be surprised though, he's been beating the odds left and right for months now! |
Oh, and he's been put on a diet. He's the only cancer patient in history to have issues with gaining weight. He sure does love trying new restaurants in Houston and he really enjoys a good home-cooked meal by his daughter. Fat pants loves to eat! Too bad Mom is cracking down. Sorry, Dad!
Dad will be undergoing his next treatment the first week of June. The new calendar has been added under the "Treatment Schedule" tab. We'll post another update after the neurology appointment. In the mean time, give him a call or stop by. He's feeling good and up for company. We also want to say thanks to Angie for thinking of Dad on her recent color run. Dad also wanted to send a big congratulations to Mia on her graduation. He was so sorry he missed it. He would much rather have watched you graduate than get chemo! We hope everyone else is doing great. Don't forget to swing by the guest book and say hello to Dad. Love you all!
Dad will be undergoing his next treatment the first week of June. The new calendar has been added under the "Treatment Schedule" tab. We'll post another update after the neurology appointment. In the mean time, give him a call or stop by. He's feeling good and up for company. We also want to say thanks to Angie for thinking of Dad on her recent color run. Dad also wanted to send a big congratulations to Mia on her graduation. He was so sorry he missed it. He would much rather have watched you graduate than get chemo! We hope everyone else is doing great. Don't forget to swing by the guest book and say hello to Dad. Love you all!
What golf ball? April 22, 2014
We all know by now that Dad lovingly refers to his colon tumor as his "Dirty Golf Ball." So naturally when I found an actual golf ball that said "What's Up Your Butt," I had to get it for him. I thought I'd class it up a bit by displaying it in a wooden and glass case, the kind usually reserved for signed footballs or game winning baseballs. Dad could appreciate the humor in this, and proudly displayed the golf ball in his living room. It wasn't meant to be a reminder of his tumor, Lord knows he never forgets about that, rather a distraction. Instead of seeing it and thinking of cancer, he could have a good laugh and move on.
So why tell you all this?
Well you see, if you were to ask what was up Dad's butt these days, he'd very happily reply, "Nothing." Because the tumor is gone. His colon tumor has completely disappeared. That dirty little golf ball that was blocking 70% of his colon isn't there anymore. The chemo is working, and we have the CT scans to prove it.
Needless to say, today's appointment with Dr. Shureiqi went very well. Dad's colon is completely clean and the tumors in his liver are shrinking and disappearing at an impressive rate. His liver is functioning normally. His spleen is functioning normally. His white blood counts are exactly where they need to be, and his tumor markers are down from 59 to 30. It's like he forgot he had cancer.
So why tell you all this?
Well you see, if you were to ask what was up Dad's butt these days, he'd very happily reply, "Nothing." Because the tumor is gone. His colon tumor has completely disappeared. That dirty little golf ball that was blocking 70% of his colon isn't there anymore. The chemo is working, and we have the CT scans to prove it.
Needless to say, today's appointment with Dr. Shureiqi went very well. Dad's colon is completely clean and the tumors in his liver are shrinking and disappearing at an impressive rate. His liver is functioning normally. His spleen is functioning normally. His white blood counts are exactly where they need to be, and his tumor markers are down from 59 to 30. It's like he forgot he had cancer.
Round 11 of chemo and still smiling!
Dr. Shureiqi is pretty baffled by how well Dad has responded to treatment. He's happy, but baffled because he remembers how very recently it was that he delivered a pretty crushing diagnosis. What a difference a few months can make! He wants to keep Dad on the same chemo regimen for at lest three more months. After which, they will do another scan to check his progress. Dad is pretty quickly approaching the point where he will be on maintenance doses of chemo. He'll eventually be on a little pill. No needles, no port, no weeks spent in Houston.
Until then, he'll just keep getting the "juice" with a smile on his face.
It wasn't all butterflies and rainbows today. Ok, who am I kidding of course it was! His colon tumor is gone! His liver tumors are small and few! His body is fighting cancer like it thinks it's a machine!
But it does all take a toll and he's now on blood pressure medication. In fact his chemo was delayed a bit tonight until they could get his BP down enough to sustain treatment. The Avastin stops blood flow to the tumors, but also effects the cardiovascular system in other ways. In Dad's case, it causes his blood pressure to spike. If it were a singular event, it wouldn't be an issue. However, if he were to sustain his current BP, it could result in heart and kidney damage. So blood pressure medicine it is! All the happy news today definitely makes it a little easier to swallow one more pill.
Until then, he'll just keep getting the "juice" with a smile on his face.
It wasn't all butterflies and rainbows today. Ok, who am I kidding of course it was! His colon tumor is gone! His liver tumors are small and few! His body is fighting cancer like it thinks it's a machine!
But it does all take a toll and he's now on blood pressure medication. In fact his chemo was delayed a bit tonight until they could get his BP down enough to sustain treatment. The Avastin stops blood flow to the tumors, but also effects the cardiovascular system in other ways. In Dad's case, it causes his blood pressure to spike. If it were a singular event, it wouldn't be an issue. However, if he were to sustain his current BP, it could result in heart and kidney damage. So blood pressure medicine it is! All the happy news today definitely makes it a little easier to swallow one more pill.
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As you can see, Dad was all smiles after hearing the good news! His initial reaction was amazement, then gratitude for how well everything has worked out.
What was your initial reaction? Complete the poll below so Dad can see how his friends and family felt after hearing the news! Just select your response and hit the "vote" button. After that, click view results to see how others responded! |
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Here's dad alongside his favorite nurse, Elsenyia. She is the perfect compliment to Dr. Shureiqi's get-down-to-business attitude. She's always quick to laugh and was just as happy to hear Dad's good news as he was!
Moving forward, Dad will continue his treatments every two weeks and see Dr. Shureiqi monthly. We will post the May calendar just as soon as it's available. Remember, we will also be looking for volunteer drivers for some of his May appointments, so check back under the "support" tab once the calendar is posted to sign up.
Dad especially wants to thank everyone for being so supportive and positive during this whole ordeal. Believe him, it has helped! We love you guys so much and can't say that enough.
We'll post his next update in two weeks. It's going to be a great one...I can feel it! Until next time...
Moving forward, Dad will continue his treatments every two weeks and see Dr. Shureiqi monthly. We will post the May calendar just as soon as it's available. Remember, we will also be looking for volunteer drivers for some of his May appointments, so check back under the "support" tab once the calendar is posted to sign up.
Dad especially wants to thank everyone for being so supportive and positive during this whole ordeal. Believe him, it has helped! We love you guys so much and can't say that enough.
We'll post his next update in two weeks. It's going to be a great one...I can feel it! Until next time...
Love and Chemotherapy April 16, 2014
Look at those two crazy kids!
April 8, 2014 marked a pretty special day for Mom and Dad; their 32nd wedding anniversary and a little bit of chemo! Since chemotherapy isn't exactly the most romantic way to celebrate more than three decades of marital bliss, they decided to take a little trip before hand and end things at MD Anderson. Dad's always said it doesn't matter what he's doing with Mom as long as he gets to do it with her, so I don't think he was too torn up about spending their actual anniversary in the hospital.
This year they decided to head to Fredricksburg, TX. It had been a long time since either of them had been up that way and they were excited to go back. Mom found a really cozy cabin with a wood fireplace that Dad made good use of. Both of them were feeling a little under the weather, so it was a perfect spot to relax and just be together. They had a great time!
Enjoying the view.
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Major relaxation.
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Cruising around town!
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Catching some zzzz's...
What makes chemo better? Smoothies!
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After their trip, they made their way back to Houston so Dad could undergo his tenth chemo cycle. Apparently he thought he was still on vacation, as he passed out in the waiting room at the hospital. See photo at left.
This chemo cycle was a little rough on him. He was pretty exhausted afterwards and had to deal with a few stomach issues as well. We think it was all made worse because he was a little sick over the weekend, so he wasn't going into treatment at 100%. But he's a trooper and after his pump came off of Thursday he was back to feeling like his old self again. He's also dealing with some new and exciting side effects...chemo is like an adventure! His nose runs really badly while he is on the Avastin drip. His blood pressure goes up and down, again from the Avastin. And his skin some times breaks out from the--you guessed it!--Avastin. But all things considered, he is having a much easier time with this newer drug than he was on the Oxaliplatin. Better to be a temporarily snotty mess than to feel pain every time you touch something a little too hot or a little too cold! His hair is growing back some, but it is patchy in places and breaks/falls out really easily which is why he shaved it begin with. Mom would like him to hold on to what little he has left, but he says "he does what he wants" so we'll see. Between you and me, he does what Mom says. His next CT scan is scheduled the day after Easter. That's a good sign right? We hope hope hope that we see a continued decline in the size of his tumors. Again, most importantly, we want to see a decrease in the size/number of liver tumors. He had a lot of those and they were straining his liver a bit so any decrease is a good thing. I am sure they will also be looking at the size of his spleen to make sure it's still doing ok. It was enlarged from the chemo (a totally expected side effect) so they were monitoring that as well. After his scan on Monday, he'll meet with Dr. Shureiqi on Tuesday to discuss progress and next steps. He'll still be on a twice a month chemo regimen for a while, but we're not sure if the combination of drugs is going to stay the same. Dr. Shureiqi hasn't led us astray yet, so if he tells Dad he has to have chemo while standing on his head, you can bet that's what we'll do. Can you imagine those pictures? Ha! I've also put up the information we have on each of his specific chemo therapy drugs. You can find that under the "Information" tab. Once we know his May treatment dates, we will be requesting volunteer drivers to take him to Houston. That will be under the "Support" tab just as soon as those dates are scheduled. We'll know Dad's CT Scan results on the 21st and will post an update then as I know you're all excited to see his progress. Until then, keep the guest book love coming and think happy thoughts for the 21st! Hope everyone has a very Happy Easter! See you soon :) |
Two post tuesday! March 25, 2014
Today was so great we thought we'd post two updates...one about chemo and one about golf!
Are you sitting down?If not, you should be because you are about to hear some SHOCKING NEWS! Dad's tumor markers are down to 59! That's right, double digits. His doctor was thrilled and, quite frankly, pretty surprised that the chemo is working so well. I'm including a handy little graph below so you can see how dramatically his numbers have fallen in just a few short months.
Look how nice this graph is!
Mighty impressive isn't it? He's not in the clear yet, but he is progressing so well that it is almost unbelievable. From 1576 to 538 to 189 to 59...it's remarkable! How did Dad react to the news?
Two thumbs up! And I must say I have to agree. He sailed through chemo today after getting such a good report from his doctor. It makes it a little easier for him to handle when he knows how well it's working.
Despite the amazing strides he is making, Dr. Shureiqi isn't comfortable backing off of the chemo schedule just yet. Dad will continue with business as usual until his oncologist feels like he is ready for lower, maintenance doses. Dad's not complaining though! His next CT Scan will be in 1 month. We know from his lowered tumor marker levels that the cancer cells are dying off. This does not mean the tumors are gone. The cells are dying and the tumors are gradually shrinking, but it is a very slow process. We look forward to his next scan to show us exactly where Dad is in terms of tumor size. He's doing fantastic, but he's not out of the woods yet. Dr. Shureiqi has always maintained that you have to be diligent about your treatment. We don't want to lose any of this progress so we're going to stay the course for now and wait to see what the next scan shows. Until then we are celebrating! 59! |
Winning!Not only is Dad killin' it in chemo, but he's throwing down pretty hard on the golf course too! Just ask his brothers. His poor, loser brothers.
Dad's brother Dave came in from Alabama just to see him. I'm kidding of course, there was a fantasy baseball draft that Dave couldn't miss, but he still made time to hang out with his big brother. Dad, Dave, and Clay hit the links last weekend for a bit of friendly competition. As it turns out, it wasn't really a competition at all...Dad kicked butt! He shot an 85, Clay an 89, and Dave a 105. Ouch, Dave. Ouch. Dad was a little disappointed that he didn't have the chance to beat his brother Cary this go 'round. He loves making Cary cry every chance he can get, which is pretty much anytime they all play golf together. 
Dad and Dave
Dad and Clay
Dad had such a great time hanging out with Dave and Clay, and can't wait to do it again. He sure does love his brothers!
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sip'sippy March 19, 2014
Dad got to see some friendly faces this go 'round, all the way from Mississippi! Or Sip'sippy if Dad's telling the story. Missy, Charlie, Eden, and Noah made the trek across three state lines just to hang out with Dad and accompany him to his March 11 chemotherapy appointment. I think this means he's spoiled. He had a great time visiting and very much enjoyed the company. He loved catching up with everyone, especially Charlie who was nice enough to hang out with him while he was getting treatment.
Just look at those two good looking guys!
In treatment news, this was a pretty uneventful cycle which is our favorite kind. It was Dad's eighth cycle. Eighth! Can you believe that? It doesn't really feel like it's been that long since he was first diagnosed, but he's been trucking right along with this treatment business! He was a little tired after the treatment as always, but he bounces back so quickly these days that he hardly slows down much at all anymore. It's so much easier on him now that he's off of that yucky old Oxilaplatin!
Dad will be meeting with Dr. Shureiqi before his next round of chemo. He only needs to see him once a month now that the worst of his side effects have subsided. This meeting should be pretty straightforward, mostly just to make sure that Dad's blood counts are doing ok and that the current chemo drugs are doing the trick. He won't have any scans for another month or two yet, so at this point he's just being monitored by his oncologist. We are hopeful though that the next CT will be just as impressive as his last one.
We also learned from the genetic counselor that Dad tested negative for Lynch Syndrome. This is a genetic form of colon cancer that almost guarantees you'll get the disease if you are a genetic carrier. By Dad being negative, Colton and I are in the clear for this type of colon cancer. Phew! That does NOT mean we can forgo screening, but it does mean we can relax a bit about this particular type which strikes early and aggressively. There are a lot more details to post regarding the test for Lynch Syndrome, but we are going to wait until our next meeting with the genetic counselor before putting it here. We always want to make sure we give you guys accurate information and I have a couple more questions I need cleared up first!
His next treatment is scheduled for March 25. Also, there are just 12 days left of Colon Cancer Awareness Month, so if you haven't encouraged your friends and loved ones over 50 to talk to their doctors...get on it! The ONLY way to stop colon cancer in it's tracks is early screening. And don't forget to click on the "Information" tab above to see all of the people who dressed up in support of "Dress in Blue Day" to show Dad they're with him. A big thank you to all who participated! Until next time y'all!
Just look at those two good looking guys!
In treatment news, this was a pretty uneventful cycle which is our favorite kind. It was Dad's eighth cycle. Eighth! Can you believe that? It doesn't really feel like it's been that long since he was first diagnosed, but he's been trucking right along with this treatment business! He was a little tired after the treatment as always, but he bounces back so quickly these days that he hardly slows down much at all anymore. It's so much easier on him now that he's off of that yucky old Oxilaplatin!
Dad will be meeting with Dr. Shureiqi before his next round of chemo. He only needs to see him once a month now that the worst of his side effects have subsided. This meeting should be pretty straightforward, mostly just to make sure that Dad's blood counts are doing ok and that the current chemo drugs are doing the trick. He won't have any scans for another month or two yet, so at this point he's just being monitored by his oncologist. We are hopeful though that the next CT will be just as impressive as his last one.
We also learned from the genetic counselor that Dad tested negative for Lynch Syndrome. This is a genetic form of colon cancer that almost guarantees you'll get the disease if you are a genetic carrier. By Dad being negative, Colton and I are in the clear for this type of colon cancer. Phew! That does NOT mean we can forgo screening, but it does mean we can relax a bit about this particular type which strikes early and aggressively. There are a lot more details to post regarding the test for Lynch Syndrome, but we are going to wait until our next meeting with the genetic counselor before putting it here. We always want to make sure we give you guys accurate information and I have a couple more questions I need cleared up first!
His next treatment is scheduled for March 25. Also, there are just 12 days left of Colon Cancer Awareness Month, so if you haven't encouraged your friends and loved ones over 50 to talk to their doctors...get on it! The ONLY way to stop colon cancer in it's tracks is early screening. And don't forget to click on the "Information" tab above to see all of the people who dressed up in support of "Dress in Blue Day" to show Dad they're with him. A big thank you to all who participated! Until next time y'all!
Feelin' good, feelin' fine March 2, 2014
Chemo can't slow him down!
Hey good people! There isn't much to report after Dad's last cycle, but no news is good news I guess. Dad is feeling pretty great these days, all things considered. He seems to be bouncing back quicker after each chemo cycle now that he's off of Oxilaplatin. It also helps that his chemo sessions are down to about 5 hours now. Some of those annoying and painful side effects have also subsided which certainly helps him to recover faster. His cold sensitivity has faded and he's now able to enjoy ice cream again. Score! It seems his biggest concern these days is getting me to take him to "Garden World" (aka Houston Garden Center) after his chemo sessions. I guess if that's the biggest concern he has at the moment, he's doing alright!
His doctor is still very glad with the way he is progressing and is now seeing Dad only once a month. He's also going to keep Dad on this less intense chemo regimen for a while. Progress may not be as dramatic as before, but the cancer cells won't be able to grow back even on this new "reduced" chemotherapy. Dr. Shureiqi isn't worried, so we aren't worried. Dad's next scan will be scheduled in 2-3 months, so for now we just keep on doing what we're doing. I'm not sure if "relaxed" is the right word, but we all feel like we can breathe a bit easier now that he's stable on his treatments. He's a trooper for sure!
We also want to say a huge thank you to Dad's Uncle Al for being his first volunteer driver! It's not always easy heading to Houston before the sun comes up, but we really appreciate you taking the time. I know Dad enjoyed the visit too! Also, they are still adding his March appointments to his schedule so we'll update that just as soon as we know all of his upcoming dates.
The last little thing I want to add is in reference to March being Colon Cancer Awareness Month. We want to make sure everyone leaves this site better informed than before they came. We'll be posting little tidbits of information on the "INFORMATION" tab throughout the month, so check back often to learn more. Until then!
His doctor is still very glad with the way he is progressing and is now seeing Dad only once a month. He's also going to keep Dad on this less intense chemo regimen for a while. Progress may not be as dramatic as before, but the cancer cells won't be able to grow back even on this new "reduced" chemotherapy. Dr. Shureiqi isn't worried, so we aren't worried. Dad's next scan will be scheduled in 2-3 months, so for now we just keep on doing what we're doing. I'm not sure if "relaxed" is the right word, but we all feel like we can breathe a bit easier now that he's stable on his treatments. He's a trooper for sure!
We also want to say a huge thank you to Dad's Uncle Al for being his first volunteer driver! It's not always easy heading to Houston before the sun comes up, but we really appreciate you taking the time. I know Dad enjoyed the visit too! Also, they are still adding his March appointments to his schedule so we'll update that just as soon as we know all of his upcoming dates.
The last little thing I want to add is in reference to March being Colon Cancer Awareness Month. We want to make sure everyone leaves this site better informed than before they came. We'll be posting little tidbits of information on the "INFORMATION" tab throughout the month, so check back often to learn more. Until then!
gone, baby gone! February 19, 2014
Smooth like a baby!
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Well folks, he's done it! Dad finally made the decision to shave his head! His hair was starting to break easily leaving lots of little short pieces that would stick up every which way. It had also gotten pretty patchy in some places. Dad's never been one to be vain, but he was starting to complain about how he couldn't do anything with his hair. We knew it wouldn't be much longer before he "handled" it. So he woke up this morning, made his decision, and went and saw Mr. Blaine. Thank goodness he had a nicely shaped head under there...phew!
Dad is totally fine with it. It's just another step on this road he's on. He's also pretty stoked about the money he'll save on haircuts. Mom was a bit more nervous, but then again she's been looking at the same head of hair for 35 years. He met her for lunch today to reveal his new look, and she didn't run away screaming so I think they'll be alright for the next 35. Plus, Dad said it's like she gets to try out a whole new husband without getting into trouble. Leave it to him to put a positive spin on things! In other Dad news, he's been doing pretty great. The weather's warming up so he's able to spend some time getting his garden ready which you all know makes his happy little heart sing. His next treatment is scheduled for February 25. In the mean time, he can have healthy visitors. So if you're ever in Groves (haha!) stop on by. See you guys on the 25th! |
nEW jUICE fEBRUARY 12, 2014
Aaaaand he's smiling again! Hey everybody! Dad had his 6th chemo cycle yesterday and compared to the previous 5, he is feeling fantastic. Dr. Shureiqi finally made the decision to remove Oxilaplatin from his chemotherapy regimen. This was the drug responsible for most of Dad's side effects. It is a neurotoxin that is great at killing cancerous cells but equally great at attacking healthy cells too. In order to avoid long-term nerve damage, it was removed from the "juice line-up." Mom and Dad were a little nervous that removing this drug would allow the cancer to grow back. Fortunately, this isn't how cancer works. Dad may not see the drastic decreases in his tumor marker levels like he did before, but they will continue to steadily decline over time. Newer research suggests that there really isn't such a thing as remission when it comes to certain cancers. It may appear the cancer is "cured" but it came come back quickly and with a vengeance. The solution to this is to always be on some form of chemotherapy. It will eventually be a maintenance dose, but he'll be undergoing treatment for the rest of his very long life.
Dr. Shureiqi reinforced just how strong the chemo that Dad had been receiving was. We always knew it was a high level of chemotherapy, but I think Dr. Shureiqi didn't want to scare Dad by telling him too much in the beginning. We now know that he had to be as agressive as he was because the cancer Dad has is extremely aggressive too. We thought we knew the extent, but it was made pretty clear at this last visit that the doctor was hitting Dad so hard because it was so bad. We're actually glad he didn't tell us just how bad off Dad was in the beginning. It would have been way too devastating to hear and he wouldn't have been able to manage the treatment (mentally and emotionally) as well as he has.
Before Dad was able to get too excited about being taken off of one chemo drug, Dr. Shureiqi put him on a new one called Avastin. Avastin is not actually a form of chemotherapy. In an earlier post I explained that it is a type of drug that stops cancerous cells from receiving blood supply. This causes the cells to die off from "starvation." There are some new and exciting side effects for this medication, the worst of which is a perforated (hole) bowel. Dad has to act very quickly if he feels a stabbing stomach pain. It could mean the intestine has burst. This is very serious because it releases all of the waste and bacteria into the bloodstream. It can cause him to go septic (whole body blood infection) and is life-threatening. Luckily for Dad, this has only happened to one of Dr. Shureiqi's patients in the last 7 years. Some lesser side effects are headaches and nosebleeds as his vascular system (veins, arteries, and capillaries) re-rout themselves away from the tumor. He also has to monitor his blood pressure and heart rate now as well. Chemotherapy is such a fun adventure! Ha.
Dr. Shureiqi reinforced just how strong the chemo that Dad had been receiving was. We always knew it was a high level of chemotherapy, but I think Dr. Shureiqi didn't want to scare Dad by telling him too much in the beginning. We now know that he had to be as agressive as he was because the cancer Dad has is extremely aggressive too. We thought we knew the extent, but it was made pretty clear at this last visit that the doctor was hitting Dad so hard because it was so bad. We're actually glad he didn't tell us just how bad off Dad was in the beginning. It would have been way too devastating to hear and he wouldn't have been able to manage the treatment (mentally and emotionally) as well as he has.
Before Dad was able to get too excited about being taken off of one chemo drug, Dr. Shureiqi put him on a new one called Avastin. Avastin is not actually a form of chemotherapy. In an earlier post I explained that it is a type of drug that stops cancerous cells from receiving blood supply. This causes the cells to die off from "starvation." There are some new and exciting side effects for this medication, the worst of which is a perforated (hole) bowel. Dad has to act very quickly if he feels a stabbing stomach pain. It could mean the intestine has burst. This is very serious because it releases all of the waste and bacteria into the bloodstream. It can cause him to go septic (whole body blood infection) and is life-threatening. Luckily for Dad, this has only happened to one of Dr. Shureiqi's patients in the last 7 years. Some lesser side effects are headaches and nosebleeds as his vascular system (veins, arteries, and capillaries) re-rout themselves away from the tumor. He also has to monitor his blood pressure and heart rate now as well. Chemotherapy is such a fun adventure! Ha.
He's feeling much better these days too. Just look at that smiling face! His stomach cramps have finally stopped and he's able to eat and sleep, almost normally, again.
He's also weirdly excited about getting his head shaved next week. He says he's tired of his old "broken down, busted up, fallin' out hair." More power to you, Dad.
He's also excited to have his first volunteer driver take him to his February 25 appointment. Give it up for Uncle Al Escagne! Thanks so much for agreeing to help out. Mom will certainly not miss driving to Houston this one time. Hopefully Dad behaves himself so other people sign up to drive him in the future. He's ornery though so who knows!
Thank you guys so much again (we really can't say it enough) for being there during this last week. It was pretty rough on him, but he pulled through like everyone knew he would. You can't keep a Matt boy down for long! Keep the guest book love and private messages coming. I've also cracked the whip about him replying to emails in a timely fashion, so if you've sent one to him, a response is on the way. In his defense, he's not super email savvy yet, but he's getting there! The next update will be full of shiny bald head photos so check back in about a week for Dad's brand new look! Until next time, Dad says "take it easy!" (in his best Cuban accent, haha!)
He's also weirdly excited about getting his head shaved next week. He says he's tired of his old "broken down, busted up, fallin' out hair." More power to you, Dad.
He's also excited to have his first volunteer driver take him to his February 25 appointment. Give it up for Uncle Al Escagne! Thanks so much for agreeing to help out. Mom will certainly not miss driving to Houston this one time. Hopefully Dad behaves himself so other people sign up to drive him in the future. He's ornery though so who knows!
Thank you guys so much again (we really can't say it enough) for being there during this last week. It was pretty rough on him, but he pulled through like everyone knew he would. You can't keep a Matt boy down for long! Keep the guest book love and private messages coming. I've also cracked the whip about him replying to emails in a timely fashion, so if you've sent one to him, a response is on the way. In his defense, he's not super email savvy yet, but he's getting there! The next update will be full of shiny bald head photos so check back in about a week for Dad's brand new look! Until next time, Dad says "take it easy!" (in his best Cuban accent, haha!)
He no longer holds the record for the most chemo bags!
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Who can sleep so hard they snore during chemo? This guy!
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Maxin' and relaxin'! Enjoying only having 5 hours of chemo instead of 11. Progress people!
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fREE AT LAST! fEBRUARY 8, 2014
Hey guys! Not a huge update today, but we just wanted to let you know that Dad was finally released from the hospital. He's still having some stomach issues, but it's a matter of his body resting and healing now. He's got three new medications to add to his regimen and a few temporary dietary restrictions which should help him get back to "normal" in the next couple of days. He was discharged around 6:00 p.m. today as his potassium was still low and he had to finish two 4-hour drip bags on his IV. Other than that today was pretty uneventful. Mom has a few pictures of him enjoying his last bit of "room service" (seriously, the food is pretty great there) and we'll post those as soon as she gets home to email them to me. On doctor's orders, he is to rest for the next two days. This will hopefully allow his platelets enough time to come back up to acceptable chemo levels. We are asking that he have no visitors for the next 48 hours to allow him to sleep. You guys can call, text, or Facetime freely though. If he's tired, he may not answer, but you all are totally welcome to catch up with him.
Also, we just wanted to throw this out there...If any of you are available this Tuesday, February 11, at 4:45 A.M. (that's right people, A.M.) and would be willing to drive Dad to Houston for his next appointment, please click on the "Support" tab above and fill out the volunteer form. It's very short notice and extremely early in the morning but I thought I'd ask so Mom could have a bit of a break. We've also opened up additional dates too if you are interested but unable to help out this Tuesday. Once you fill out the volunteer form, I'll email you all of the information you need.
I've also updated his treatment schedule for February, so you can check out his new calendar too. Also, we're in the process of scanning in the information we've been collecting from his doctors about his condition and treatment. Those links will be posted on the "Information" tab once our little project is completed. We're shooting for the end of the month on that. Look for the next big update Tuesday after his appointment with his oncologist.
Lastly and most importantly, thank you, thank you, thank you so much for all of your love, support, well-wishes, and prayers over this last week. Mom and Dad wanted me to make sure everyone knows how much they appreciate it. Truly they do and we hope you all know that. See you Tuesday!
Also, we just wanted to throw this out there...If any of you are available this Tuesday, February 11, at 4:45 A.M. (that's right people, A.M.) and would be willing to drive Dad to Houston for his next appointment, please click on the "Support" tab above and fill out the volunteer form. It's very short notice and extremely early in the morning but I thought I'd ask so Mom could have a bit of a break. We've also opened up additional dates too if you are interested but unable to help out this Tuesday. Once you fill out the volunteer form, I'll email you all of the information you need.
I've also updated his treatment schedule for February, so you can check out his new calendar too. Also, we're in the process of scanning in the information we've been collecting from his doctors about his condition and treatment. Those links will be posted on the "Information" tab once our little project is completed. We're shooting for the end of the month on that. Look for the next big update Tuesday after his appointment with his oncologist.
Lastly and most importantly, thank you, thank you, thank you so much for all of your love, support, well-wishes, and prayers over this last week. Mom and Dad wanted me to make sure everyone knows how much they appreciate it. Truly they do and we hope you all know that. See you Tuesday!
Everything's coming up roses! February 7, 2014
Well, not everything, but Dad's improving and I really wanted to post a picture of the beautiful flowers my Aunt Candy sent me to cheer me up. Let me tell you, it worked! Everyone was feeling a little down yesterday and Dad felt TERRIBLE. But things seem to be looking up for the weekend which is great news. Here we go...
- Dad met with a dietitian to discuss ways to "slow things down." He's on the world's most boring diet for the next little bit until his system adjusts to food again. Think plain white rice, plain noodles, and plain chicken. Mmm. His oncologist wants him eating normally as quickly as possible since that is one of the reasons he's stayed so healthy for so long, but he has to ease his way back into things.
- They started to hear a little bit of congestion in his lungs yesterday, so they've been making him blow into a tube to prevent pneumonia. He was being kind of a baby about yesterday, but has been doing much better today and his lungs have cleared.
- He was in so much pain yesterday that he was unable to take the doctor recommended walks. This meant he had to have another blood thinner injection. Today however, he was able to take two walks and even visited the M.D. Anderson gift shop. We think he mostly just wanted to show off his sexy hospital gown.
- Dad is feeling MUCH better today. Yesterday was very rough on him and it was difficult to see him like that. However, the medicines are finally getting everything under control. His cramps have lessened, he's able to get up and about, and his happy outlook is back. He was down in the dumps yesterday for sure, but today he's back to his old self.
- His oncologist came in to discuss plans for future chemo. His dose is coming WAAAAY down. He's still figuring out the specifics, but he will not be on the same configuration anymore. Dr. Shureiqi was also pretty giddy (and that's saying a lot because Dr. Shureiqi doesn't really do giddy) about Dad's CT Scan. He says the tumors in his liver are shrinking. Even more so than the last scan 3 weeks ago. This is incredible news. The doctor said sometimes the cancer cells that are dying off can cause fever spikes and colon irritation as they are excreted from the body. He thinks that may be part of what's going on here. He didn't see anything infectious.
- Dr. Campagna, the internist, said if Dad can keep up the progress he's made today, he may be able to go home tomorrow. Dad is trying his level best to make sure he can go home, but his fever has to stay gone and his stomach has to stay calm in order for that to happen.
- His platelets are low right now, too low for another chemo treatment. He has to have blood work done Tuesday morning (the day his chemo is scheduled) and if the counts are still to low, they will have to reschedule his session. There is no way to know if they'll improve, and really nothing he can do to make them go up faster, so we'll just have to wait and see.
- Dad is able to receive texts now if anyone would like to send him a quick hello. He's still not really up to phone calls just yet. Please don't be offended if he doesn't text back as he may be sleeping!
- We'll post some photos of Dad once he's looking a little better. Trust me, it's better this way! We'll update you guys again once we know if he's going home tomorrow. Hope you all have a great weekend!
hospital, day 2 February 6, 2014
UPDATE 2:30 p.m.: Dad has gotten a little bit worse since last night. His fever has returned and his abdominal cramps have worsened again. The morphine isn't helping and so he has been prescribed a different medication in an effort to calm the cramps. He is still afraid to eat anything because anytime he does, his stomach cramps violently. Here is what we know so far today:
That's it for now, but I'll post again this evening if anything new develops. He is just trying to get as much sleep as possible--although it's sometimes difficult when a nurse comes in every 30 minutes--in order to help his body to heal. Mom is also trying to rest as she's working on about 4 hours of sleep in the last 72 hours. Please try to refrain from calling/texting unless it's an emergency. They've both been through a lot the last couple days and need as much rest as they can get in order to get through the days ahead. Thanks for all of the support! Love y'all.
- He had to have a catheter put in place around 1 a.m. this morning. I won't elaborated beyond that for discretion purposes, but it is uncomfortable to say the least.
- He had another abdominal shot this morning with more blood thinner. This is to help prevent blood clots from forming as he is not moving around very much.
- He is still on antibiotics. Some are to combat the colitis, others are broad spectrum and combat multiple bacteria.
- His fever is back, although not as high. It was 100.5 this morning. This is concerning to the doctors as it could mean something else is wrong. They are still monitoring him closely and running tests.
- His pain is back. They have given him Bentyl to help slow his stomach cramps and intestinal spasms, but it's too soon to know if it will help. Morphine does not help him.
- He is not eating. He is too afraid of the pain that follows. This isn't good as he hasn't really eaten for 4 days now. He drank a Boost supplement drink, but it went right through him and caused cramps as well. We are waiting for the doctors to instruct on how to move forward with this because he has no energy.
- He has not seen his doctor yet today. He's been receiving orders from the nurse so far. We'll post another update when we do hear from Dr. Shureiqi or Dr. Campagna.
- He had to be started on a potassium chloride pump as his potassium levels have dropped since he was first admitted. This isn't good for his heart, but isn't unexpected as it is an effect of sudden and massive fluid loss (i.e., vomiting or diarrhea)
That's it for now, but I'll post again this evening if anything new develops. He is just trying to get as much sleep as possible--although it's sometimes difficult when a nurse comes in every 30 minutes--in order to help his body to heal. Mom is also trying to rest as she's working on about 4 hours of sleep in the last 72 hours. Please try to refrain from calling/texting unless it's an emergency. They've both been through a lot the last couple days and need as much rest as they can get in order to get through the days ahead. Thanks for all of the support! Love y'all.
ADMITTED TO HOSPITAL fEBRUARY 5, 2014
UPDATE 5:15 p.m.: Dad will most likely be in the hospital until Friday. They are continuing to monitor his stomach issues and temperature. His fever finally broke, but since it was so high for so long (103 degrees for a while) they want to make absolutely sure there is not something infectious at play before releasing him. He was also pretty dehydrated so they definitely want to get that under control before he goes home. Some bullet points so far today:
That's it for this update. I'll post more this evening if anything develops. He's a trooper for sure! Love y'all :)
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Hey everyone. I just wanted to share a quick update with you all. Mom called last night about 10:00 saying that Dad was complaining of terrible stomach pain and had started to run a high fever. He'd been having a bit of stomach trouble this cycle (especially for the last three days) but it became unbearable to the point where he was requesting pain medication last night. That's completely out of character for Dad. Normally if he has a fever, Mom and Dad will proceed to the nearest emergency room. They will contact Dr. Shureiqi in Houston and run the tests he orders. Once Dr. Shureiqi gives the all clear, Dad can go home with whatever medication he's been prescribed. This time though, since Dad had such stomach pain, Mom thought it best to bring him to M.D. Anderson's Emergency Center. They got there around midnight (February 4) and the ER team immediately set to work. He was dehydrated so he received and IV. He had blood drawn from both his port in his chest and his arm for cultures. They took all sorts of samples and prepped him for a CT Scan. They also started him on a morphine drip to help dull the pain which did not work. He was also given an injection of blood thinners in his abdomen which they say is standard procedure. Fortunately he hasn't had to go to the Emergency Center yet for anything beyond fever management so this is all new to him.
They are concerned at this point about the following: infection, blockage, spleen issues, colon issues, unknown factors. They have not narrowed anything down yet as they are running more tests. He was finally moved to a room at about 5 a.m. We are just waiting on the doctor to come in now to read the results of his CT Scan and tell us how to proceed. He is to have no visitors until further notice. We will update you all as soon as we have word about what is causing all of his pain/fever.
One more thing; he is trying to rest as much as possible at this point as he has not really slept in several days. We have turned off his phone in order to facilitate this. Please check back here for updates. We'll let you know once he's well enough to receive well wishes via text or phone call! Thanks everyone!!
- Dr. Shureiqi (Dad's oncologist) says this is all most likely a reaction to chemotherapy; however everything else has to be ruled out.
- His chemotherapy drugs will have to be reduced. This can be done in a number of ways (slowing down the drip, lowering the dose, removing a medication, etc.) but we won't know more until he speaks with Dr. Shureiqi again.
- His chemotherapy that is scheduled for Tuesday could possibly be delayed if he doesn't "bounce back" from this in time. They won't proceed with the next cycle until his blood counts return to acceptable levels.
- The attending physician, Dr. Campagna, reported Dad's CT Scan results. He has colitis (not to be confused with ulcerative colitis) which is inflammation of the colon. That was what was causing all of his pain. His colitis could be infectious colitis (Clostridum difficile colitis) which can go pretty bad, pretty quick so they are treating him as if that is what he has. They'll know more about the cause after the lab work comes back.
- His diet will have to change a bit from this point forward. Before, he was always told to eat what he could tolerate. Aside from spicy and overly cold/hot foods, he has been able to eat most everything. Moving forward, we learned that after each chemotherapy session, he will be lactose intolerant for a few days so he will have to refrain from dairy. He also has to be careful of very fatty foods as they are harder to digest. Bummer.
- The second chemotherapy drug, Irinotecan aka "I ran to the can," is most likely the cause of the pain. Apparently, Dad has been very lucky to have gone this long without suffering side effects from this medication. He was suffering more from Oxilaplatin which is the neurotoxin responsible for most of his side effects.
- They also took a chest X-ray to rule out any further infection. Those results aren't in yet.
- He's on two antibiotics as a precautionary measure and an IV drip at this point. There haven't been any other major medications dispensed.
- He's been ordered by the doctor take walks to prevent blood clots and blow into tubes in order to keep his lungs clear. No rest for the weary I guess!
- He's finally getting a bit of relief from the pain and was able to rest a bit today after lunch. He ate a bit of hamburger--his first "meal" in about three days--and was lightly scolded by Dr. Campagna for making bad food choices. Poor guy was so hungry though, that he wasn't thinking clearly. He's having lean protein for dinner, which by the way is delivered like room service. You call and place your order from a large menu including items like grilled shrimp and stuffed crab. I think it may be hard to get him to go home actually.
That's it for this update. I'll post more this evening if anything develops. He's a trooper for sure! Love y'all :)
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Hey everyone. I just wanted to share a quick update with you all. Mom called last night about 10:00 saying that Dad was complaining of terrible stomach pain and had started to run a high fever. He'd been having a bit of stomach trouble this cycle (especially for the last three days) but it became unbearable to the point where he was requesting pain medication last night. That's completely out of character for Dad. Normally if he has a fever, Mom and Dad will proceed to the nearest emergency room. They will contact Dr. Shureiqi in Houston and run the tests he orders. Once Dr. Shureiqi gives the all clear, Dad can go home with whatever medication he's been prescribed. This time though, since Dad had such stomach pain, Mom thought it best to bring him to M.D. Anderson's Emergency Center. They got there around midnight (February 4) and the ER team immediately set to work. He was dehydrated so he received and IV. He had blood drawn from both his port in his chest and his arm for cultures. They took all sorts of samples and prepped him for a CT Scan. They also started him on a morphine drip to help dull the pain which did not work. He was also given an injection of blood thinners in his abdomen which they say is standard procedure. Fortunately he hasn't had to go to the Emergency Center yet for anything beyond fever management so this is all new to him.
They are concerned at this point about the following: infection, blockage, spleen issues, colon issues, unknown factors. They have not narrowed anything down yet as they are running more tests. He was finally moved to a room at about 5 a.m. We are just waiting on the doctor to come in now to read the results of his CT Scan and tell us how to proceed. He is to have no visitors until further notice. We will update you all as soon as we have word about what is causing all of his pain/fever.
One more thing; he is trying to rest as much as possible at this point as he has not really slept in several days. We have turned off his phone in order to facilitate this. Please check back here for updates. We'll let you know once he's well enough to receive well wishes via text or phone call! Thanks everyone!!
Super mega update! January 31, 2014
Dad waiting to hear the results of his scan.
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Dad, happy (but still in shock!) about the GREAT news!
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Aw.
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Maintaining his title as the guy with the most chemo bags!
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Chemotherapy cycle 5.
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Hey everybody! Long time, no update. Between vacations and work and root canals (eek!) the last few weeks have been busy, but I'm back in business now so here we go!
I know you all have heard the great, nay AMAZING news! Dad's tumor markers have plummeted almost 60% after just three cycles. Three people! That is fantastic information and way better than any of us--Dr. Shureiqi included--were expecting. So just to recap on Mom's awesome update, Dad's markers are down to 538 from 1576.
Incredible! Just to put that into perspective, a healthy, cancer free patient's tumor markers should be anywhere from 0-3. Remember, tumor markers are little indicators in the blood and other tissue that let you know if you have cancerous cells and more importantly how widespread the cells are in the body. When we originally found out Dad's diagnosis, his markers were just over 1400. Two weeks later they had shot up to 1576. That's a testament to how aggressive his form of cancer really is. Knowing all of that information, the best we thought we could hope for with this first scan was that his tumor markers would hold at their current levels. Imagine our surprise when his doctor told him they had dropped so significantly. Dr. Shureiqi is VERY pleased with Dad's results. He said so on the 14th and again on the 28th.
In other happy news (it's like Christmas all over again!), there have been slight decreases in the sizes of his tumors. This is fantastic as they were worried about his liver function being hindered by the sheer quantity of tumors. His colon tumor (dirty golf ball!) has shrunk as well. These decreases are slight, but any decrease in tumor size is great news. In less-happy-but-still-okay-and-I'll-tell-you-why news, the little spots in his lungs did turn out to be cancer. We never had them tested because the test is invasive and he was going to start chemo for his liver and colon anyway. The doctors said that if there was a change in the size of the lung lesions after Dad started chemo, they could confidently say they were cancerous. His CT Scan showed that all of the lesions in his lungs have shrunk so small (they were tiny to start) that they aren't a concern at all at this point. So yes, the cancer had spread to his lungs, but it's almost completely gone now so it's no longer the focus of any discussion.
Now not due to cancer, but to chemotherapy, Dad is experiencing quite a few side effects from his treatment. The first is an enlarged spleen. Chemotherapy is a toxin, and your body has to work very hard to try to process/filter it. This puts a strain on some of the other organs. The spleen acts primarily as a filter for the blood so it gets the unpleasant job of trying to process the "juice." Naturally, this causes the spleen to work a little harder since there is nothing natural about the drugs they use during chemotherapy. His doctor's are monitoring the size and function of his spleen and completely expected it to be enlarged at this stage in his treatment.
At some point, Dad will have to be pulled off of one of his chemotherapy drugs, Oxilaplatin, as it is a neurotoxin and can do just as much harm as good. This is the main cancer drug that is responsible for shrinking the tumors and lowering the tumor markers; problem is, is that it can cause irreparable nerve damage. If the point of all this is to keep the old man around for a long time, we don't want him to be in pain. There is definitely an art to this and Dr. Shureiqi is amazing at what he does. Currently, Dad is still suffering from tingling and cold sensitivity which could become permanent if it goes unchecked. He also experiences issues with his tongue "jumping." He now has medication to relax his diaphragm as he suffers from long bouts of hiccups (his current record is 3 days.) Nausea and fatigue are still things he deals with in the days after treatment. The skin on his feet is also peeling quite a bit. And of course, his hair is going. All of this is due to the Oxilaplatin and has to be monitored closely to ensure he's still at a point where the side effects can be reversed. They will continue with his other two drugs once they do stop Oxilaplatin (at the time of this update, he is still on it) and they are considering adding another medication called Avastin to the mix. It won't be a chemo drug, but it is an antibody they helps the body produce an an angiogenic inhibitor. Basically it will keep blood vessels from forming at the tumor sites. This will effectively starve the tumors causing them to shrink. Currently, Dad is the record holder for the most bags of medication in his Ambulatory Treatment Center (chemo wing). And I'm not joking people. I asked him if that was a competition he was really trying to win. He said winning is what he does. I suppose it is.
Dad also visited with the genetic counselor this month to determine if the type of cancer he has is genetic or sporadic. About 80% of colon cancer is sporadic meaning it's a random genetic mutation that causes cancer cells to form. 10-15% is familial which means there is a predisposition to develop colon cancer based on family history, but not a guarantee that you will. 5% of colon cancers are caused by Lynch Syndrome. Lynch Syndrome does not skip a generation, so if Dad tests negative there is no way Colton and I have the syndrome. If Dad has Lynch Syndrome then Colton and I almost certainly have it, and are therefore highly likely (about 80%) to develop cancerous cells. Lynch Syndrome sometimes manifests itself as ovarian cancer, colon cancer, stomach cancer, etc. We'll be tested once Dad's results come in. It's pretty unlikely that he'll test positive, so we're not too worried. We'll update you guys on that when we know more.
One other bit of serious business: Dad had to go the emergency room around 3:00 a.m. on January 23. He was running a fever of almost 102. That warrants an immediate trip the emergency room no matter how long the fever lasts. Everything checked out ok. There was no infection, just a reaction to the chemotherapy. He isn't allowed to take Tylenol or certain antibiotics now as the interactions with his other medications could be severe. We know this because he was placed on antibiotics as a precaution, but was quickly taken off of it because it does not mix well with his chemotherapy. Good thing Dr. Shureiqi caught that...phew! On the subject of infections, we want to thank everyone again for always checking the website before visiting Dad to make sure it's safe for him to have company. Dr. Shureiqi is very impressed that his white blood counts have stayed at normal levels. He also said Dad can relax on the mask-wearing a bit. This is great news and it makes life easier for Dad, but we still need to be diligent about keeping him away from sick people. Keep up the great work guys!!
In bald news, Dad will be going to Mr. Blaine's soon to get his last hair cut for a while. His hair's really starting to fall out and break off now, so he's taking charge and shaving it all off! He's super brave. Now he'll finally be able to rock all of the beanies he's started to collect!
Dad's attitude thus far has been great, considering. He's really done a remarkable job of keeping it all in perspective and taking the treatments and tests like a champ. He gets tired from the chemo and a little snippy some times, but he's allowed. All things considered, he's keeping it together really well! He's still the same old Dad as always and we don't really see that changing anytime soon. Thank goodness too, because we wouldn't allow it.
I'll be posting his February treatment schedule soon, as well as a few more improvements/changes to the website, so check back next week for those. We've also posted a few "thank you's" on his GoFundMe page so check those out at well. Until then, keep the Guest Book "love" coming as Dad really looks forward to it! See you soon!
I know you all have heard the great, nay AMAZING news! Dad's tumor markers have plummeted almost 60% after just three cycles. Three people! That is fantastic information and way better than any of us--Dr. Shureiqi included--were expecting. So just to recap on Mom's awesome update, Dad's markers are down to 538 from 1576.
Incredible! Just to put that into perspective, a healthy, cancer free patient's tumor markers should be anywhere from 0-3. Remember, tumor markers are little indicators in the blood and other tissue that let you know if you have cancerous cells and more importantly how widespread the cells are in the body. When we originally found out Dad's diagnosis, his markers were just over 1400. Two weeks later they had shot up to 1576. That's a testament to how aggressive his form of cancer really is. Knowing all of that information, the best we thought we could hope for with this first scan was that his tumor markers would hold at their current levels. Imagine our surprise when his doctor told him they had dropped so significantly. Dr. Shureiqi is VERY pleased with Dad's results. He said so on the 14th and again on the 28th.
In other happy news (it's like Christmas all over again!), there have been slight decreases in the sizes of his tumors. This is fantastic as they were worried about his liver function being hindered by the sheer quantity of tumors. His colon tumor (dirty golf ball!) has shrunk as well. These decreases are slight, but any decrease in tumor size is great news. In less-happy-but-still-okay-and-I'll-tell-you-why news, the little spots in his lungs did turn out to be cancer. We never had them tested because the test is invasive and he was going to start chemo for his liver and colon anyway. The doctors said that if there was a change in the size of the lung lesions after Dad started chemo, they could confidently say they were cancerous. His CT Scan showed that all of the lesions in his lungs have shrunk so small (they were tiny to start) that they aren't a concern at all at this point. So yes, the cancer had spread to his lungs, but it's almost completely gone now so it's no longer the focus of any discussion.
Now not due to cancer, but to chemotherapy, Dad is experiencing quite a few side effects from his treatment. The first is an enlarged spleen. Chemotherapy is a toxin, and your body has to work very hard to try to process/filter it. This puts a strain on some of the other organs. The spleen acts primarily as a filter for the blood so it gets the unpleasant job of trying to process the "juice." Naturally, this causes the spleen to work a little harder since there is nothing natural about the drugs they use during chemotherapy. His doctor's are monitoring the size and function of his spleen and completely expected it to be enlarged at this stage in his treatment.
At some point, Dad will have to be pulled off of one of his chemotherapy drugs, Oxilaplatin, as it is a neurotoxin and can do just as much harm as good. This is the main cancer drug that is responsible for shrinking the tumors and lowering the tumor markers; problem is, is that it can cause irreparable nerve damage. If the point of all this is to keep the old man around for a long time, we don't want him to be in pain. There is definitely an art to this and Dr. Shureiqi is amazing at what he does. Currently, Dad is still suffering from tingling and cold sensitivity which could become permanent if it goes unchecked. He also experiences issues with his tongue "jumping." He now has medication to relax his diaphragm as he suffers from long bouts of hiccups (his current record is 3 days.) Nausea and fatigue are still things he deals with in the days after treatment. The skin on his feet is also peeling quite a bit. And of course, his hair is going. All of this is due to the Oxilaplatin and has to be monitored closely to ensure he's still at a point where the side effects can be reversed. They will continue with his other two drugs once they do stop Oxilaplatin (at the time of this update, he is still on it) and they are considering adding another medication called Avastin to the mix. It won't be a chemo drug, but it is an antibody they helps the body produce an an angiogenic inhibitor. Basically it will keep blood vessels from forming at the tumor sites. This will effectively starve the tumors causing them to shrink. Currently, Dad is the record holder for the most bags of medication in his Ambulatory Treatment Center (chemo wing). And I'm not joking people. I asked him if that was a competition he was really trying to win. He said winning is what he does. I suppose it is.
Dad also visited with the genetic counselor this month to determine if the type of cancer he has is genetic or sporadic. About 80% of colon cancer is sporadic meaning it's a random genetic mutation that causes cancer cells to form. 10-15% is familial which means there is a predisposition to develop colon cancer based on family history, but not a guarantee that you will. 5% of colon cancers are caused by Lynch Syndrome. Lynch Syndrome does not skip a generation, so if Dad tests negative there is no way Colton and I have the syndrome. If Dad has Lynch Syndrome then Colton and I almost certainly have it, and are therefore highly likely (about 80%) to develop cancerous cells. Lynch Syndrome sometimes manifests itself as ovarian cancer, colon cancer, stomach cancer, etc. We'll be tested once Dad's results come in. It's pretty unlikely that he'll test positive, so we're not too worried. We'll update you guys on that when we know more.
One other bit of serious business: Dad had to go the emergency room around 3:00 a.m. on January 23. He was running a fever of almost 102. That warrants an immediate trip the emergency room no matter how long the fever lasts. Everything checked out ok. There was no infection, just a reaction to the chemotherapy. He isn't allowed to take Tylenol or certain antibiotics now as the interactions with his other medications could be severe. We know this because he was placed on antibiotics as a precaution, but was quickly taken off of it because it does not mix well with his chemotherapy. Good thing Dr. Shureiqi caught that...phew! On the subject of infections, we want to thank everyone again for always checking the website before visiting Dad to make sure it's safe for him to have company. Dr. Shureiqi is very impressed that his white blood counts have stayed at normal levels. He also said Dad can relax on the mask-wearing a bit. This is great news and it makes life easier for Dad, but we still need to be diligent about keeping him away from sick people. Keep up the great work guys!!
In bald news, Dad will be going to Mr. Blaine's soon to get his last hair cut for a while. His hair's really starting to fall out and break off now, so he's taking charge and shaving it all off! He's super brave. Now he'll finally be able to rock all of the beanies he's started to collect!
Dad's attitude thus far has been great, considering. He's really done a remarkable job of keeping it all in perspective and taking the treatments and tests like a champ. He gets tired from the chemo and a little snippy some times, but he's allowed. All things considered, he's keeping it together really well! He's still the same old Dad as always and we don't really see that changing anytime soon. Thank goodness too, because we wouldn't allow it.
I'll be posting his February treatment schedule soon, as well as a few more improvements/changes to the website, so check back next week for those. We've also posted a few "thank you's" on his GoFundMe page so check those out at well. Until then, keep the Guest Book "love" coming as Dad really looks forward to it! See you soon!
YOU'll never believe it! January 16, 2014
Hi everyone just a quick update (I am filling in as updater since the President of this website is vacationing LOL!) finally some GREAT NEWS Buddy's tumor markers have dropped from 1576 to 538 and ct scans show slight decreases in the tumor sizes which indicates he is responding well to this course of treatment. We will have much more details when Brittany returns but wanted to share this information with everyone now want to also thank you for all the support and prayers and please keep them coming.
Just a quick note! January 7, 2014
Hey Everyone! I just wanted to let you all know that Alex I will be out of town from January 9 until January 19. We're going to Europe to celebrate my 30th and his 40th birthday. Boo for getting older, yay for vacations! Even though we'll be gone, there are some important things happening with Dad's treatment this coming week. He will have his first CT Scan since being diagnosed. The scan is on Monday, we'll get results on Tuesday, and will post a brief update on Wednesday. Mom will be taking care of the January 15 update. Go Mom! I will post the full update upon my return, but we didn't want to make you guys wait too long to learn his CT Scan results.
You guys may have noticed the "Fever Meter" and the volunteer-to-drive-Dad-to-chemo sign up sheet ("Support" tab). Thank you so much for being so diligent in checking his health status before making plans to visit. It sets everyone's mind at ease knowing exactly when to be extra careful. Also, thank you so much for our first volunteer! We will be using your services shortly Candy Green.
Lastly, I just wanted to let you all know that Dad's "thick and luxurious hair" as he likes to put it, is beginning to fall out. There was never a question of "if" his hair would fall out--the chemo he is on guarantees that it will--it was always a matter of "when." We were told it would happen around cycle 3 or 4. Dad was hoping his little locks would hold on until cycle 5 but it looks like they won't quite make it. He's not bald yet, or even noticeably patchy, but he wakes up to hair on his pillow every morning and notices it washing down the drain when he showers each night. He did mention not showering in an effort to keep his hair as long as he could, but Mom and I promptly set him straight on that one. Once he's feels like it's time, he's going to make an appointment with Mr. Blaine, his longtime barber, to shave it all off. We sure hope his hair isn't hiding some weird lumpy scalp! All jokes aside, it is a little alarming to know that he will very quickly go from looking totally normal to looking like a cancer patient. He's said before that even with the man purse and a mask, people don't always assume to know what's wrong, but when you're bald people immediately think "cancer." He's right. Up until this point, you wouldn't be able to look at Dad and tell he was sick. He still looks great! But soon there will be a pretty obvious sign that he's fighting cancer. And that's ok though as long as he's fighting. This is just another step on his road to recovery. In lighter news, we were told that it could potentially grow back a different texture and, more rarely, a different color. Maybe once the chemo slows down he'll be able to grow a sweet red or blonde 'fro!
Check back on the 15th for a quick update of his CT results and keep the guestbook love and messages coming in the mean time!
You guys may have noticed the "Fever Meter" and the volunteer-to-drive-Dad-to-chemo sign up sheet ("Support" tab). Thank you so much for being so diligent in checking his health status before making plans to visit. It sets everyone's mind at ease knowing exactly when to be extra careful. Also, thank you so much for our first volunteer! We will be using your services shortly Candy Green.
Lastly, I just wanted to let you all know that Dad's "thick and luxurious hair" as he likes to put it, is beginning to fall out. There was never a question of "if" his hair would fall out--the chemo he is on guarantees that it will--it was always a matter of "when." We were told it would happen around cycle 3 or 4. Dad was hoping his little locks would hold on until cycle 5 but it looks like they won't quite make it. He's not bald yet, or even noticeably patchy, but he wakes up to hair on his pillow every morning and notices it washing down the drain when he showers each night. He did mention not showering in an effort to keep his hair as long as he could, but Mom and I promptly set him straight on that one. Once he's feels like it's time, he's going to make an appointment with Mr. Blaine, his longtime barber, to shave it all off. We sure hope his hair isn't hiding some weird lumpy scalp! All jokes aside, it is a little alarming to know that he will very quickly go from looking totally normal to looking like a cancer patient. He's said before that even with the man purse and a mask, people don't always assume to know what's wrong, but when you're bald people immediately think "cancer." He's right. Up until this point, you wouldn't be able to look at Dad and tell he was sick. He still looks great! But soon there will be a pretty obvious sign that he's fighting cancer. And that's ok though as long as he's fighting. This is just another step on his road to recovery. In lighter news, we were told that it could potentially grow back a different texture and, more rarely, a different color. Maybe once the chemo slows down he'll be able to grow a sweet red or blonde 'fro!
Check back on the 15th for a quick update of his CT results and keep the guestbook love and messages coming in the mean time!
Ringing in the New year! January 1, 2014
Midnight Kiss!
We rang in the New Year in style, with 11 hours of chemotherapy! And a little light making out apparently.
This was Dad's third chemotherapy cycle and was a little rougher than the rest. They decided to slow down one of the chemotherapy drugs from a 2 hour drip to a 6 hour drip in order to decrease some of the side effects he experienced during his last cycle. Oxiliplatin is a neurotoxin and side effects should be expected; however, it affected his airway during the last cycle. He was given steroids to counteract this, but the effects can be cumulative so they were overly prepared this time. They prepped the room with a "crash kit" just in case the reaction was more severe and he had trouble breathing. Fortunately it was just a precaution and wasn't needed. Thank goodness because that little kit was pretty serious looking.
This was Dad's third chemotherapy cycle and was a little rougher than the rest. They decided to slow down one of the chemotherapy drugs from a 2 hour drip to a 6 hour drip in order to decrease some of the side effects he experienced during his last cycle. Oxiliplatin is a neurotoxin and side effects should be expected; however, it affected his airway during the last cycle. He was given steroids to counteract this, but the effects can be cumulative so they were overly prepared this time. They prepped the room with a "crash kit" just in case the reaction was more severe and he had trouble breathing. Fortunately it was just a precaution and wasn't needed. Thank goodness because that little kit was pretty serious looking.
Crash kit.
Even though they slowed his drip, Dad still suffered from the side effects and was very tired from the increased time spent receiving medication. He suffered from whole body twitches which are annoying more than anything, but do make him very tired. He looked pretty pale after this go around, but woke up this morning looking worlds better. He hasn't really looked "sick" yet--something even his doctors comment on--so it was a little weird to see him so twitchy and pale. But like I said, a good night's rest and a protein rich breakfast helped tremendously. Now he looks like regular ol' Bud again.
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Dad also set a new personal record for IV bags. This time he topped out at 15. We're not sure why he feels the need to continuously beat his record, but he's an overachiever I guess.
He still has just the two chemotherapy drugs (the third is via his pump) but the rest of the bags are full of preparatory medications as well as those that prevent/lessen side effects. Hopefully they don't have to add too many more otherwise his chemo sessions will start lasting upwards of 10-12 hours. That's a looong day. The upswing to his late night chemo this go 'round was his visit from Missy! She drove in all the way from Mississippi to spend time with him while he was being treated. She's also going to keep him company at my house for the next couple of days until he gets his pump removed. He's a stubborn ass about some of his medications so she'll be enforcing the schedule Mom made up while I'm at work. He's kind of a baby about all this really. 
Dad and his Missy.
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His old ball and chain.
In general news, Dad's doing ok. He goes in for his first CT scan since being diagnosed on January 13. We are trying not to be too hopeful (it's only been 3 cycles) but we would like to see the growth at least stopped. Anything beyond that is icing on the cake. He's also been doing really well with his neutrophils (white blood counts) recovering between cycles. They haven't had to delay any treatment because of them being too low. This is great as we want to keep moving full steam ahead for as long as he can.
He's also been very fortunate not to get sick. This flu season has been rough, but Dad (and all of you!) have been so careful. We really appreciate you guys staying away if you're sick. It's one less thing for him to worry about. |
Dad did have the opportunity to catch up with a few old friends over the last week or two and it's been so nice for him to be healthy enough to do that. Let's just keep working to keep him that way.
Last thing, his treatment calendar for January is up. I've also put a sign up form on the "Support" tab for those of you who wish to take him to M.D. Anderson. We learn his schedule only a month in advance, so once that month's treatment schedule is up, you guys can submit your names to me if you are able/want to help. You will receive an email with all of the necessary information if you volunteer to drive him. Thank you so, so much in advance to everyone who has offered to help in this way.
We have a good feeling about 2014. We are staying hopeful and positive and feel like we will get some good news in these next few months. Remember, any progress no matter how small it may seem, is huge when you are battling cancer. Until next time, I'll leave you with this photoshopped picture of Dad dressed as the New Year's Baby. See you all in 2014!
Last thing, his treatment calendar for January is up. I've also put a sign up form on the "Support" tab for those of you who wish to take him to M.D. Anderson. We learn his schedule only a month in advance, so once that month's treatment schedule is up, you guys can submit your names to me if you are able/want to help. You will receive an email with all of the necessary information if you volunteer to drive him. Thank you so, so much in advance to everyone who has offered to help in this way.
We have a good feeling about 2014. We are staying hopeful and positive and feel like we will get some good news in these next few months. Remember, any progress no matter how small it may seem, is huge when you are battling cancer. Until next time, I'll leave you with this photoshopped picture of Dad dressed as the New Year's Baby. See you all in 2014!
Round 2: More Juice December 18, 2013
Ready for surgery!
Well, yesterday was a 17 hour day at M.D. Anderson. Dad claims that it wasn't anything he couldn't handle, but he started to get a little snippy at hour 16. We won't hold that against him though. In fact, he was probably justified after the day he had. Nothing went wrong, it was just a very long and tiring day.
It started off with blood work at 8:00 a.m. From there we went to check in for his Portacath surgery. They were running about three hours behind schedule but fortunately everything went exactly as planned during his procedure. This was Dad's first ever surgery and he did great. He super loved the "narcotics" they gave him and at one point even told Mom that the ceiling tiles were rolling. He liked having this particular type of juice! Dr. Brown even took into consideration that Dad likes to hunt, so he placed the catheter a little more centered in the chest than normal. Once he's fully healed he'll be able to fire a rifle. Or a pellet gun at the "damn squirrels on my bird feeder," as he says. The portacath was X-rayed after insertion and everything is perfectly in place. He just can't lift anything over 20 pounds or raise his right arm over his head for 4-6 weeks. He's says this will keep him from pumping iron. Sure Dad.
Dad also thought it was kind of cool to get a Power Port card to carry with him when he's traveling. This way, he doesn't set off airport security because he has a Portacath in his chest. He'll still probably get frisked at the airport but at least he won't get arrested for transporting contraband!
It started off with blood work at 8:00 a.m. From there we went to check in for his Portacath surgery. They were running about three hours behind schedule but fortunately everything went exactly as planned during his procedure. This was Dad's first ever surgery and he did great. He super loved the "narcotics" they gave him and at one point even told Mom that the ceiling tiles were rolling. He liked having this particular type of juice! Dr. Brown even took into consideration that Dad likes to hunt, so he placed the catheter a little more centered in the chest than normal. Once he's fully healed he'll be able to fire a rifle. Or a pellet gun at the "damn squirrels on my bird feeder," as he says. The portacath was X-rayed after insertion and everything is perfectly in place. He just can't lift anything over 20 pounds or raise his right arm over his head for 4-6 weeks. He's says this will keep him from pumping iron. Sure Dad.
Dad also thought it was kind of cool to get a Power Port card to carry with him when he's traveling. This way, he doesn't set off airport security because he has a Portacath in his chest. He'll still probably get frisked at the airport but at least he won't get arrested for transporting contraband!
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Colton came to this appointment since we were scheduled to meet with a genetics counselor in order to discuss our risk for developing colon cancer. Unfortunately, we were unable to make it to this appointment as the surgery schedule was so far behind. We will be going back in January to meet with the genetic counselors. The type of cancer Dad has is not a genetic cancer, meaning Dad didn't pass a "cancer gene" to us. But because both he and his mom had colon cancer, we are more likely to develop the disease. Make sense? Good thing for us colon cancer is so easy to catch. Regular and early colonoscopies are key. So, if you are a Matt kid who is approaching 30, you need to speak with your doctor about screening options. We'll post more specific information once we meet with the experts.
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Gang's all here!
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Once Dad was finished with his surgery, we went to meet with his oncologist, Dr. Shureiqi, where we actually heard some positive news. Of course, we do not know how the cancer is responding yet. It's much too soon for that. What we do know is that Dad's white blood count (the body's infection fighters and how they know you're ready for your next round of chemo) is great. He was also really happy Dad is feeling so good after chemo. Of course, he's tired for 3-5 days, but once it passes he has 8-10 days were he feels mostly pretty good. Dr. Shureiqi says this is a good sign because apparently he's giving Dad really strong doses of chemotherapy which Dad is recovering quickly from.
We do have a CT scan scheduled on January 13 to see where we are. Remember, step one is to stop the cancer from progressing. Once that happens, we focus on reversing the damage. We do not expect a huge change, but that's ok because baby steps are big steps when treating cancer. Dr. Shureiqi gave Dad the all clear to keep doing what he is doing as long as he feels ok. All he did say was to stay away from sick people. So just as a friendly reminder, DO NOT COME VISIT DAD IF YOU OR SOMEONE IN YOUR HOUSEHOLD HAS BEEN SICK IN THE LAST 48 HOURS. Please and thank you.
We do have a CT scan scheduled on January 13 to see where we are. Remember, step one is to stop the cancer from progressing. Once that happens, we focus on reversing the damage. We do not expect a huge change, but that's ok because baby steps are big steps when treating cancer. Dr. Shureiqi gave Dad the all clear to keep doing what he is doing as long as he feels ok. All he did say was to stay away from sick people. So just as a friendly reminder, DO NOT COME VISIT DAD IF YOU OR SOMEONE IN YOUR HOUSEHOLD HAS BEEN SICK IN THE LAST 48 HOURS. Please and thank you.
Eleven different medications. Eleven.
The juice part deux. This round of chemotherapy was better in some ways and worse in others. Oxiliplatin (administered over a 2 hour period), Dad's first medication, made him sweat an excessive amount the last time he had it. This time however, he didn't begin to get as hot until the last 30 minutes or so. That was a good thing. We also know that because Dad experienced muscle spasms during the second medication (Irinotecan), he would be given a preventative medicine to stop it. So they did and it helped to a certain degree. He experienced very little nausea as a result but developed a few new twitches. We also noticed that dad was speaking like his tongue was swollen, so he was given a corticosteroid to help keep his throat relaxed. Other than being extremely tired last night (we got home around 2:00 a.m.) he really did pretty well for being on such heavy doses of these medications.
Dad is settled in at his second home now with his juice pump. His portacath is working just fine and he's feeling pretty good. He's a little sleepy, but that's totally expected. He is also tingly in his fingers and feet. I'm told it feels really weird. He has to go back to get the pump disconnected at midnight on Thursday and he can not wait. Even though the man purse is a stylish accessory, it is kind of annoying having to carry it everywhere. Only 1 more day Dad...hang in there!
Since I have you here, I wanted to make you aware of a couple of updates that are coming to the website. First, there will be a visitor indicator on the home page. This will be the place you check before visiting Dad. If his blood counts are low, no visitors. If he is starting to develop a fever, no visitors. If there is a flu/cold/virus going around, no visitors. He loves facetime, so take advantage of that if you really just need to see his lovely face on a "no visitor" day. That will update as often as his status does, so check back often.
Next, we will be scanning in some of his chemotherapy documents. This was you can read up on it too if you are interested. It will be under the "information" tab.
Finally, many of you have generously offered to take Dad to chemo, and starting at the end of January, we would like to take you up on that offer. We will be posting a calendar and sign up link for volunteers to drive Dad to chemo. Details for this will be on the "Support" tab later this month.
I apologize if this update is a little rambling, I'm working on about 3 hours of sleep. Dad did want me to make sure and say thanks again to everyone for checking up on him through this website. He loves the guest book and loves that you guys have a way to keep up with him. He'll be back into town on Friday. Remember to check the visitor indicator (up soon!) or call him before visiting, but I know he can't wait to see you guys. You've been great and it helps him out more than you know. We will be spending New Year's Eve at M.D. Anderson. Until then!
Dad is settled in at his second home now with his juice pump. His portacath is working just fine and he's feeling pretty good. He's a little sleepy, but that's totally expected. He is also tingly in his fingers and feet. I'm told it feels really weird. He has to go back to get the pump disconnected at midnight on Thursday and he can not wait. Even though the man purse is a stylish accessory, it is kind of annoying having to carry it everywhere. Only 1 more day Dad...hang in there!
Since I have you here, I wanted to make you aware of a couple of updates that are coming to the website. First, there will be a visitor indicator on the home page. This will be the place you check before visiting Dad. If his blood counts are low, no visitors. If he is starting to develop a fever, no visitors. If there is a flu/cold/virus going around, no visitors. He loves facetime, so take advantage of that if you really just need to see his lovely face on a "no visitor" day. That will update as often as his status does, so check back often.
Next, we will be scanning in some of his chemotherapy documents. This was you can read up on it too if you are interested. It will be under the "information" tab.
Finally, many of you have generously offered to take Dad to chemo, and starting at the end of January, we would like to take you up on that offer. We will be posting a calendar and sign up link for volunteers to drive Dad to chemo. Details for this will be on the "Support" tab later this month.
I apologize if this update is a little rambling, I'm working on about 3 hours of sleep. Dad did want me to make sure and say thanks again to everyone for checking up on him through this website. He loves the guest book and loves that you guys have a way to keep up with him. He'll be back into town on Friday. Remember to check the visitor indicator (up soon!) or call him before visiting, but I know he can't wait to see you guys. You've been great and it helps him out more than you know. We will be spending New Year's Eve at M.D. Anderson. Until then!
fever spike December 7, 2013
It looks worse than it is, I promise!
Hey everyone. I know some of you may have heard that Dad was taken to the emergency room at St. Mary's this afternoon because he was running a fever. A fever of over 100.5 or higher can be fatal to a cancer patient as the chemotherapy they undergo wipes out their healthy, disease fighting cells as well as the cancerous cells. This means they can not fight infection on their own. An otherwise innocuous illness can be devastating to someone battling cancer.
The guidelines for going to the emergency room are as follows: a fever of 100.5 that is sustained for one hour; or, a fever of 101 or higher is to report immediately. Dad's oncologist was VERY clear that fevers are not to be taken lightly, so after running a fever from 99-101, Mom took him to the hospital.
There they ran a battery of tests to make sure he did not have a bacterial infection. They started him on a course of two IV antibiotics as well as a saline solution to combat dehydration as a precaution. They took nose and throat swabs, as well as a urine sample and blood samples. The also took a chest X-ray to be sure there was nothing in his lungs. Fortunately, all of his tests came back negative. His fever spike is most likely a reaction to his chemotherapy, but since he's still in his first cycle, we did not have a pattern to compare it too. Better safe than sorry.
He will most likely suffer a fever spike again, and probably around the same point in his next cycle. After a few chemotherapy cycles (every 14 days) we will be able to attribute the fevers to a side effect of chemotherapy; however, he will still have to be monitored. Unfortunately for Dad, he had to have his PICC line removed and sent for cultures just to make sure there was no bacteria on the line itself. They wanted to leave this in for his next session just in case they were unable to insert his Portacath. Again, better safe than sorry. I should also mention that all of this was done under the orders of Dr. Shureiqi, Dad's oncologist at M.D. He spoke at length to the on call doctor at St. Mary's about how to go about treating Dad and what to test for.
Dad went home with a course of antibiotics and will be wearing a mask for the next few days to make sure he does not get sick. He is able to take small amounts of Tylenol for the next couple of days to keep the fever in check, but he can not take this for too long as it could mask a fever caused by an infection. It was all a little stressful but he got the all clear from his doctor and the attending physician at St. Mary's to go home. Not a moment too soon either, as he's not the most patient patient. See what I did there?
Anyway for the next couple of days, we ask that you guys Facetime or call Dad if you'd like to speak to him. We are trying to limit his visitors over the next week in order to help him avoid getting sick. He's about to enter the "low" point in his treatment cycle were he'll have even less white blood cells and will be even more susceptible to illness. We'll let you know when it's okay for you to visit. Just please remember, you'll be asked to wear a mask and wash up before hugging/touching/visiting dad. Hopefully there won't be anymore surprises! Until next time.
The guidelines for going to the emergency room are as follows: a fever of 100.5 that is sustained for one hour; or, a fever of 101 or higher is to report immediately. Dad's oncologist was VERY clear that fevers are not to be taken lightly, so after running a fever from 99-101, Mom took him to the hospital.
There they ran a battery of tests to make sure he did not have a bacterial infection. They started him on a course of two IV antibiotics as well as a saline solution to combat dehydration as a precaution. They took nose and throat swabs, as well as a urine sample and blood samples. The also took a chest X-ray to be sure there was nothing in his lungs. Fortunately, all of his tests came back negative. His fever spike is most likely a reaction to his chemotherapy, but since he's still in his first cycle, we did not have a pattern to compare it too. Better safe than sorry.
He will most likely suffer a fever spike again, and probably around the same point in his next cycle. After a few chemotherapy cycles (every 14 days) we will be able to attribute the fevers to a side effect of chemotherapy; however, he will still have to be monitored. Unfortunately for Dad, he had to have his PICC line removed and sent for cultures just to make sure there was no bacteria on the line itself. They wanted to leave this in for his next session just in case they were unable to insert his Portacath. Again, better safe than sorry. I should also mention that all of this was done under the orders of Dr. Shureiqi, Dad's oncologist at M.D. He spoke at length to the on call doctor at St. Mary's about how to go about treating Dad and what to test for.
Dad went home with a course of antibiotics and will be wearing a mask for the next few days to make sure he does not get sick. He is able to take small amounts of Tylenol for the next couple of days to keep the fever in check, but he can not take this for too long as it could mask a fever caused by an infection. It was all a little stressful but he got the all clear from his doctor and the attending physician at St. Mary's to go home. Not a moment too soon either, as he's not the most patient patient. See what I did there?
Anyway for the next couple of days, we ask that you guys Facetime or call Dad if you'd like to speak to him. We are trying to limit his visitors over the next week in order to help him avoid getting sick. He's about to enter the "low" point in his treatment cycle were he'll have even less white blood cells and will be even more susceptible to illness. We'll let you know when it's okay for you to visit. Just please remember, you'll be asked to wear a mask and wash up before hugging/touching/visiting dad. Hopefully there won't be anymore surprises! Until next time.
Hello from DadDad just wanted to say a quick hello to everyone. It's short, but we wanted everyone to see that he really is doing okay so far. There's been a bit of nausea today, but other than that he's still the same old guy! Click the picture below to begin playing the video.
REMINDER! I know that many of you are coming to visit him when he gets home, but if you or someone in your family is sick, DO NOT COME OVER TO VISIT. Please wait until you are symptom free for 48 hours in order to keep Dad from getting sick. Thanks!
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December 5, 2013
We thought we'd help Dad get used to wearing hats by getting him a super sweet Santa-Hunting-Fargo hat. It goes with everything! Peace.
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The Juice December 4, 2013
Maxin' and relaxin'. Look at all those IV bags!
Yesterday, December 3, 2013 was Dad's first day of chemo and, for the most part, it went okay. More details on that a little later.
His chemotherapy session came at the end of a very busy day at M.D. Anderson so he was tired going in to it. And, because yesterday was full of A TON of information, we've broken it down bit by bit for you guys below.
1. The day started off with Dad going to the Port Clinic in order to watch a pre-op education video for his upcoming Portacath surgery. His chemo is currently being delivered through a PICC line (see illustration/information below) but will be replaced by a permanent, subdermal (under the skin) Portacath on December 17. This can remain in his chest for years and will be the delivery point for his future chemotherapy and for contrast dyes needed before CT scans. It can also be used for a blood transfusion if cleared by Dr. Shureiqi as it's not designed to be used for that but can be.
2. He then went to a pre-op consultation with Dr. Brown's surgical nurse. Dr. Brown is the surgeon who will put in dad's Portacath. He has performed over 8,000 of these procdures which is reassuring. From start to finish, the procedure will take about three hours. One hour to prep, one
hour for surgery, and one hour for recovery. Once he has healed in 4-6 weeks, he will be able to resume most of his usual activities. Dad's only concern is whether or not he can swing a golf club once this is installed. The man has his priorities in order.
His chemotherapy session came at the end of a very busy day at M.D. Anderson so he was tired going in to it. And, because yesterday was full of A TON of information, we've broken it down bit by bit for you guys below.
1. The day started off with Dad going to the Port Clinic in order to watch a pre-op education video for his upcoming Portacath surgery. His chemo is currently being delivered through a PICC line (see illustration/information below) but will be replaced by a permanent, subdermal (under the skin) Portacath on December 17. This can remain in his chest for years and will be the delivery point for his future chemotherapy and for contrast dyes needed before CT scans. It can also be used for a blood transfusion if cleared by Dr. Shureiqi as it's not designed to be used for that but can be.
2. He then went to a pre-op consultation with Dr. Brown's surgical nurse. Dr. Brown is the surgeon who will put in dad's Portacath. He has performed over 8,000 of these procdures which is reassuring. From start to finish, the procedure will take about three hours. One hour to prep, one
hour for surgery, and one hour for recovery. Once he has healed in 4-6 weeks, he will be able to resume most of his usual activities. Dad's only concern is whether or not he can swing a golf club once this is installed. The man has his priorities in order.
Dr. Ervin Brown
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3. Dad also learned that he will have frequent EKGs. Because the Portacath goes directly into his heart, they want to make sure it doesn't create a new problem. We'll post more information about the Portacath once that procedure is complete.
CHEMOTHERAPY...DUN DUN DUUUNNNNN!
4. Dad's last and longest appointment of the day was his first (and much anticipated) chemotherapy session. His appointment was scheduled for 4:30, but they were running a bit behind so he didn't actually get started until about 5:30. We originally wondered why he was scheduled so late in the day as we knew chemo would take 4-6 hours. Once he got there though, it was pretty clear that every room in the place was full and that was the only available time slot. Some people were scheduled to start even later than that. We are so thankful that they were even accepting new patients as going to M.D. Anderson puts Dad in the best possible position for beating this thing.
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5. He is on a combination of 3 different medications: Oxaliplatin, Irinotecan, and 5-Fluorouracil-Leucovorin. Dr. Shureiqi said they call this combonation OLFOXIRI, which is an acronym of sorts. They are all administered separately, one right after the other.
6. The first order of business was to prep him for chemo. This involved IV bags of medication that prepared his cells to receive the treatment as well as anti-nausea medications.
7. Next, Dad received the first IV bag of chemotherapy medication, Oxaliplatin. This medication can cause extreme temperature sensitivity. Most people exhibit a sensitivity to cold, likening it to a shock sensation if they touch something too cold. It can also cause the larynx to be temporarily paralyzed if he drinks something too cold. This can be reversed by breathing into his hands in order to warm up the air he breathes. Of course, this Coon Ass was backward, and was not cold at all. Instead, he was sweating like a whore in church. Typical. This morning, he noticed that when he drank a glass of cold milk, his throat felt a little tingly. We're going to monitor this side effect.
8. After two hours of the first chemo drug, he was ready for the second bag of juice, Irinotecan. They sometimes refer to this drug as "I Ran To The Can" because of some of the less pleasant side effects. About 45 minutes into this medication, the side effects began. Initially Dad reported that his legs starting to cramp. As Mom was getting ready to alert the nurse (they had been pre-warned this could happen) Dad said his stomach was cramping pretty badly. The nurse stopped the Irinotecan and began administering Atropine to help keep the cramps at bay. The veins in Dad's wrist were visibly pulsating and he said he felt like "snakes were under the skin in his legs." Weird. Once the cramping slowed, they resumed his Irinotecan drip.
9. By about 10:30 they started hooking a pump up to Dad's PICC line. This pump contained the final bag of chemotherapy medication and must be worn for 48 hours and not a minute less. This medication is called 5-FU for short and can cause mouth sores, so he must rinse his mouth with a solution of salt, baking soda, and water several times a day. So far he has not suffered any major side effects from this last drug. He will have the pump removed from his arm on Thursday, December 5, 2013 at 11:00 p.m.
10. As far as other side effects go, Dad has really not felt too much nausea due to the medications he takes every 6 hours to prevent it. He also has medication to help with stomach cramps should he need it. He has began taking his temperature every day to monitor for fever (remember high fever can be fatal to him.) He will begin to lose his hair as soon as 3-4 cycles. He's requesting soft, yet stylish beanie caps for Christmas.
6. The first order of business was to prep him for chemo. This involved IV bags of medication that prepared his cells to receive the treatment as well as anti-nausea medications.
7. Next, Dad received the first IV bag of chemotherapy medication, Oxaliplatin. This medication can cause extreme temperature sensitivity. Most people exhibit a sensitivity to cold, likening it to a shock sensation if they touch something too cold. It can also cause the larynx to be temporarily paralyzed if he drinks something too cold. This can be reversed by breathing into his hands in order to warm up the air he breathes. Of course, this Coon Ass was backward, and was not cold at all. Instead, he was sweating like a whore in church. Typical. This morning, he noticed that when he drank a glass of cold milk, his throat felt a little tingly. We're going to monitor this side effect.
8. After two hours of the first chemo drug, he was ready for the second bag of juice, Irinotecan. They sometimes refer to this drug as "I Ran To The Can" because of some of the less pleasant side effects. About 45 minutes into this medication, the side effects began. Initially Dad reported that his legs starting to cramp. As Mom was getting ready to alert the nurse (they had been pre-warned this could happen) Dad said his stomach was cramping pretty badly. The nurse stopped the Irinotecan and began administering Atropine to help keep the cramps at bay. The veins in Dad's wrist were visibly pulsating and he said he felt like "snakes were under the skin in his legs." Weird. Once the cramping slowed, they resumed his Irinotecan drip.
9. By about 10:30 they started hooking a pump up to Dad's PICC line. This pump contained the final bag of chemotherapy medication and must be worn for 48 hours and not a minute less. This medication is called 5-FU for short and can cause mouth sores, so he must rinse his mouth with a solution of salt, baking soda, and water several times a day. So far he has not suffered any major side effects from this last drug. He will have the pump removed from his arm on Thursday, December 5, 2013 at 11:00 p.m.
10. As far as other side effects go, Dad has really not felt too much nausea due to the medications he takes every 6 hours to prevent it. He also has medication to help with stomach cramps should he need it. He has began taking his temperature every day to monitor for fever (remember high fever can be fatal to him.) He will begin to lose his hair as soon as 3-4 cycles. He's requesting soft, yet stylish beanie caps for Christmas.
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MAN PURSE
11. You can see from the picture to the right that Dad is feeling okay. You might even say he was feeling FABULOUS. He is pulling off the Man Purse, aka Murse quite nicely. That stylish yet functional little black bag holds his temporary juice pump that he will wear for 48 hours after each chemotherapy session.
Sadly, he has to return the Murse when he's finished so he won't have it all the time but he will rock it every two weeks until further notice. 12. Thursday he will have his pump removed, and Friday he and Mom are watching a video about PICC line care. She has to demonstrate that she knows how to properly flush and maintain the line before Dad can get a prescription for Heparin which is used to clean the line. These go right to his heart so maintenance of these lines is necessary to prevent blood clots. Mom only thought Dad was joking about the nurse uniform. Phew! That was a lot of information, but we want to keep you all up to date. We'll post an update in about a week and then again after the 17th which is a very big day in terms of procedures and appointments. Thank you all for your continued support. We love you guys!!! Until next time. |
Dad rocking his man purse. Nobody told him to pose like that.
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Finally! Some Good news... December 2, 2013
Dad super loves Candy Crush.
Dad met with Dr. Bednarski, a colorectal surgeon, to determine if the tumor (aka, The Dirty Golf Ball) needed to come out. We were hoping surgery would not be necessary at this point as this would delay the start of chemotherapy (aka The Juice.) Remember, it's his liver that is more of a concern right now. Delaying chemo to remove the colon tumor could mean the liver tumors worsen. We don't want that. So Dr. Bednarski got very friendly--and a little handsy--and was able to determine that there is no active bleeding. So as long as Dad's hemoglobin count stays high and there is no rapid or increased blood loss, we're a go for chemo tomorrow afternoon. This is fantastic news. In other fantastic news, Dr. Bednarski told Dad he could eat whatever he wanted to. You just know that makes a Matt boy happy.
The surgeon was glad to have met Dad and is now familiar with his case should the need for emergency surgery arise. He also mentioned that surgery at a later date to remove the colon tumor was not out of the question. It's just much better to leave it alone for now. Dr. Bednarski also said there were endoscopic specialists who could possibly control the tumor (bleeding, removal, etc.) through a scope alone. Science! He discussed that the best case scenario would be for the tumor to shrink back into the intestinal wall from the chemo. He said some patients have experienced this reversal in tumor growth. We are praying he gets to be one of those patients!
The surgeon was glad to have met Dad and is now familiar with his case should the need for emergency surgery arise. He also mentioned that surgery at a later date to remove the colon tumor was not out of the question. It's just much better to leave it alone for now. Dr. Bednarski also said there were endoscopic specialists who could possibly control the tumor (bleeding, removal, etc.) through a scope alone. Science! He discussed that the best case scenario would be for the tumor to shrink back into the intestinal wall from the chemo. He said some patients have experienced this reversal in tumor growth. We are praying he gets to be one of those patients!
Dr. Bednarski
After meeting with the surgeons it was onto the Infusion Therapy Clinic. This is where dad got information about his PICC line. PICC stands for Peripherally Inserted Central Catheter. This is basically a tube that runs from the veins in his arm directly to the vein above his heart. This is how they will administer chemo until the Portacath is surgically put in place on December 17. The procedure went well (they performed two X-rays to be sure it was correctly in place) and Mom was shown how to flush and maintain the PICC line. Dad can't wait to see Mom in a nurse outfit.
Dad flexing his PICC line.
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PICC Line Illustration.
Tomorrow is a full day of testing, consultations, and blood work. It's also his first day of chemo! He's both nervous and excited about getting juiced, but it's the best thing for moving forward. We will post an update on Wednesday as he won't be finished with chemo until late Tuesday night. Please say a little prayer and send happy thoughts his way that he won't be too sick from the medicine. Until Wednesday!
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here we go... November 26, 2013
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Today was Dad's first meeting with his oncologist, Dr. Shureiqi. He is extraordinarily thorough and spent about 2 hours with Dad going over everything in great detail. Dad has chosen to continue his treatment at M.D. Anderson in lieu of having chemotherapy done in Beaumont.
We learned a lot of information today, and I figure the easiest way to get that across is in bullet points. You can find those to the right. Before I get to that though, the following information is EXTREMELY important from this point moving forward: 
Chemo Side Effects
We all know how upbeat and full of life Dad is and, for the most part, that will not change. However, there are side effects to the chemotherapy he will be receiving. Of course, we won't know exactly how he responds until treatment begins next week, but here are some of the things he will most likely be dealing with:
-Hair Loss. He will be receiving very high doses of very powerful medications and will most likely suffer hair loss. -Fatigue. The chemo can attack red blood cells (the oxygen carriers) so there may be days when he feels a little more tired than usual. -Diet Changes. He will be on a moderately strict diet. Please refrain from bringing him any food as gifts. -Sunburn. He will also sunburn very easily. He should avoid being outside from 10 a.m. until 3 p.m. and will require sunscreen. -Weight Loss. They do have medication to counteract this, but he may lose a bit of weight which may seem jarring to some. -Coldness/Numbness/Tingling/Chills -Nausea. Finally he catches a break! They have a lot of anti-nausea medications and apparently they have come a long way. He already has a prescription for these ready to go for next Tuesday. Fortunately he won't have to deal with that unpleasant side effect. -"Chemo Brain" He may forget a few things from time to time. Just offer him a friendly reminder if he stumbles over a word or name. The doctor also let us know that he shouldn't change what he doesn't have to. Meaning, if he's having a good day, he should do the things he's always done. He has to be careful of infection of course, but he should enjoy life the same as he always did. Please still treat him like you always have. If he's having a bad day, he'll let you know, but laughter and a positive mindset will help make his journey easier! We will post more details once we meet with the Chemotherapy Specialists.
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-The tumor in his colon is not the main concern at the moment. The tumors in his liver are more detrimental to his health. However, if the tumor in his colon begins to bleed worse, it then takes priority.
-The specs on his lungs are still unconfirmed for cancer. There is a test they can do to determine if the spots are cancerous; however, it could lead to infection, an air leak, and a chest tube. If it is cancer, he will already be on chemotherapy for his liver and colon so it will take care of itself. If it's anything else, we don't really care at this juncture. -Surgery to remove the tumor in his colon is not a priority. Surgery will delay chemotherapy and this is paramount for getting the liver tumors under control. Barring any further obstruction or any increased bleeding, surgery is off the table (no pun intended) for now. He meets with a surgeon on Monday, December 2, 2013 to determine if surgery can wait. -Surgery on his liver is not an option at this time. The tumors are too large and are spread throughout the organ. We will revisit this option in the future once the tumors begin to shrink. -Dr. Shureiqi is 90% sure that the cancer in his liver is the same cancer that is in his colon so he has decided on a course of chemotherapy treatment. It is very rare that two types of cancers develop simultaneously and are first detected at the same time. The only way to be 100% sure is a biopsy, which could lead to infection and further delay treatment. We are satisfied moving forward with the 90% possibility. -Chemo begins December 3, 2013. -Dad will be on chemotherapy for the rest of his life. The dosage will change but treatment will never stop. The doctor said that even if they were able to remove all of the cancerous cells, which they can't at this point, he would still be on a chemo to keep them from coming back.
-While he is not on the strongest immuno-suppressive chemotherapy, he is still extremely susceptible to illness. Please see the warning above regarding that. We know you guys will want to check in on him, but please think of his health (and yours) before stopping by. -He will be on three different and very powerful chemotherapy drugs to start. He will receive treatment every two weeks. He will receive blood work and CT scans monthly to ensure the chemo is working. He will meet with his oncologist once a month. -He will have a Portacath (through which they deliver chemotherapy) permanently installed on December 17, 2013. His first treatment will be through a PICC line in his arm that he will get on December 2, 2013. -There is a 60% chance that the tumors will be reduced in size by 50% during the course of treatment. There is a 25% chance that there will be a minor reduction in their size. -We will also be meeting with a genetic counselor to develop a blood test for Colton and I to test our risk for developing the disease. Regular colonoscopies are the best detectors of this disease. Get checked everyone! |
Buy me a drink first? November 25, 2013
Relaxing.
Dad officially has his first day at M.D. Anderson under his belt, and he took it like a champ! Some parts more than others, but we'll get to that later. Today was just a day of testing. We also confirmed his appointment for tomorrow morning (November 26, 2013) at 9:00 a.m. with Dr. Shureiqi. That's the day he's really waiting for.
But back to today. He had some blood drawn after our arrival, which if you know Dad and needles, was not his favorite part of the day. The man had never even had an I.V. before all of this started so he's not too fond of medical procedures. He was a trooper though and was in and out in no time. After his blood work, he had to have another chest X-ray. He had one of these done just over a week ago, but the doctors at M.D. Anderson like to re-run all of their own tests. Not to knock the doctors in Southeast Texas, but we're glad they do. Dad even noticed how many more images they took this time. They were very thorough, so hopefully we'll be able to see his lungs a bit more clearly this go around.
After X-rays came the really fun part; his CT scan. Dad was thinking, "no big deal." He'd just had one eight days ago and it was quick and painless. Not today! The CT techs got really up close and personal with Dad. It was a little unexpected and Dad sort of felt like they should have bought him dinner first before getting all up in his business. He threw around the word "violated" a couple of times, but all and all I think he's getting used to people asking him to drop trou. I don't know if that's a good thing or not.
The test took much longer this time. He said they took a ton of images so we're really excited (for lack of a better word) to see what they show. We didn't have the clearest picture of what was going on in there, especially his lungs, so we're glad to finally have some answers. All of the tests results have been scanned into his chart so Dr. Shureiqi will be able to discuss the results with him tomorrow morning. The meeting will last just over an hour and we should know what his treatment schedule will be fairly soon after the meeting. Most things we've read say treatment starts about 2 days after the initial meeting with the doctor. We're hoping it's just that quick.
Just a quick note, he has a bit of a cough that we're keeping an eye on. He also has a pain in his side when he breathes. It's most likely unrelated to all of this (and just really bad timing) but we'll discuss that with the doctor tomorrow. Once he starts treatment, any illness at all has to be very closely monitored. He won't be able to be around anyone who's sick or been exposed to sickness. We'll update you guys on the specifics of that a little later. For now, he's settled on the couch playing Candy Crush on his new iPad (thanks, Candy) waiting for dinner. He's a little spoiled if you ask me. We'll post another update as soon as we're home tomorrow, so check back then. Until tomorrow!
But back to today. He had some blood drawn after our arrival, which if you know Dad and needles, was not his favorite part of the day. The man had never even had an I.V. before all of this started so he's not too fond of medical procedures. He was a trooper though and was in and out in no time. After his blood work, he had to have another chest X-ray. He had one of these done just over a week ago, but the doctors at M.D. Anderson like to re-run all of their own tests. Not to knock the doctors in Southeast Texas, but we're glad they do. Dad even noticed how many more images they took this time. They were very thorough, so hopefully we'll be able to see his lungs a bit more clearly this go around.
After X-rays came the really fun part; his CT scan. Dad was thinking, "no big deal." He'd just had one eight days ago and it was quick and painless. Not today! The CT techs got really up close and personal with Dad. It was a little unexpected and Dad sort of felt like they should have bought him dinner first before getting all up in his business. He threw around the word "violated" a couple of times, but all and all I think he's getting used to people asking him to drop trou. I don't know if that's a good thing or not.
The test took much longer this time. He said they took a ton of images so we're really excited (for lack of a better word) to see what they show. We didn't have the clearest picture of what was going on in there, especially his lungs, so we're glad to finally have some answers. All of the tests results have been scanned into his chart so Dr. Shureiqi will be able to discuss the results with him tomorrow morning. The meeting will last just over an hour and we should know what his treatment schedule will be fairly soon after the meeting. Most things we've read say treatment starts about 2 days after the initial meeting with the doctor. We're hoping it's just that quick.
Just a quick note, he has a bit of a cough that we're keeping an eye on. He also has a pain in his side when he breathes. It's most likely unrelated to all of this (and just really bad timing) but we'll discuss that with the doctor tomorrow. Once he starts treatment, any illness at all has to be very closely monitored. He won't be able to be around anyone who's sick or been exposed to sickness. We'll update you guys on the specifics of that a little later. For now, he's settled on the couch playing Candy Crush on his new iPad (thanks, Candy) waiting for dinner. He's a little spoiled if you ask me. We'll post another update as soon as we're home tomorrow, so check back then. Until tomorrow!
Brotherly love (and candy too!) November 20, 2013
Cary, Kevin, Jay, Clay, David, Candy, Maw Maw Freda, and Dad
Dad's cancer diagnosis has been a lot like poker he says. He and Uncle Kevin put it this way.
"Finding out the tumor had spread to my liver for sure, was like a bad flop. Flop wasn't worth a damn. Waiting to see if it's anywhere else is like waiting for the turn. You hope the turn is good. If the turn's bad, you have to worry about the river. You don't want to have to worry about the river." We're all in from here I guess.
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T-R-O-U-B-L-E. All eight of them. Especially that little short guy in the middle. That's what happens when all the Matts get together, and, if you know our family, it shouldn't come as a surprise. All of the siblings got together this week (even Uncle Dave from Alabama...thanks for flying in Uncle Dave!) to hang out with Dad before he heads to Houston to face this thing. I know he was happy to have the distraction. These last few days waiting to see the doctor have seemed to drag a bit, so it was definitely good for him to get out of the house and keep busy. And it's a good thing he did, because he scored some sweet keep-you-busy-during-chemo gifts from his baby sister, Candy!
In case you can't tell, that's an iPad in there! Now he can keep up with the quarter horses and FaceTime with his brothers. He'll also be able to post his own updates to this site, so you guys keep the love coming through the guestbook and check back often for his updates. Monday's the big day!
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