Hello faithful readers of Matt's blog. This is Diane, Matt's wife. I understand there has been some confusion regarding Matt's condition, as his last post states he is doing well. In fact, Matt was responding well to the transplant and was set to be discharged to a Kevin Guest House apartment on July 12 at 3pm. Unfortunately, he developed acute Graft Versus Host Disease and remains in the hospital. The graft is the donor and Matt is the host. Matt's donor's stem cells are severely attacking his intestines. This has been a huge and courageous battle for Matt. The outcome here is still questionable and Matt's resilience, hope and determination are truly remarkable and I have never known a stronger person. I hope you continue to pray for him, as he needs all the help he can get. I have been blogging since he was not able to do so and you may find my blog at
http://www.francescanova.blogspot.com/
Well wishes, funny stories about Matt, anything, can be posted in the comments section on my blog and I will read them to Matt when he is awake. He sleeps most of the day and night. I thank each and everyone of you for your continued thoughts, prayers and support of Matt. This has been a very difficult challenge for Matt and his family.
Diane
Sunday, August 12, 2007
Sunday, July 08, 2007
Getting Better all the time
Sorry it's been way too long since I've posted. There's been a lot going on, some of which didn't make me feel like posting too much, even though I should have.
Well after the transplant and the infections and the fevers, I am getting better. I think it was mentioned that my central line was replaced and moved, and this took care of the remainder of the infections. I was on quite a lot of medication at first, and Diane stayed here for a whole week helping me get along. It was really great of her.
At first the worst part was the diarrhea. One night it particular I had it rough, and much of it got on the bed and and the floor and everywhere. Yuck. The nurses and staff cleaned it up, but poor Diane was there through it all. You know it's really love when your wife can put up with, but maybe not clean up, your messy poop.
Within a day or so of that, I started to have the pee problem. Apparently the total body radiation can do a number on your bladder, and it got mine. I was having lots of pain -- banging the walls type pain --and not putting much urine out for my efforts.
Finally the docs and nurses decided I needed what's called a Foley catheter, basically a long rubber tube stuck up your penis into the bladder that is designed to drain the pee. The procedure itself, that is the insertion of the catheter, is painful but not terrible as it sounds, The worst part is having an appliance stuck into one's most sensitive organ!
After having the Foley in for a day or so, I was having these awful bladder spasms. I dare not attempt to describe them. So then it was time for the real fun: Constant bladder irrigation. This involved removing the existing catheter (Ouch!) and inserting a larger and more complicated-looking catheter that the nurses aptly called it the "garden hose." Once inserted, one of the lines into this catheter was connected to giant three-liter bags of sterile water, on an additional pole I might add. This combined with my natural pee was evacuated from my bladder through the Foley. Lots of fun, right?
Anyway, I had this arrangement for about a week, and it sucked as much as any of the treatments I've had so far. It was, however, effective. The constant irrigation was stopped Friday and the Foley was removed I am doing OK without it, except for a seemingly constant need to pee. We're getting beyond that, though.
Other than the the bladder Issue, I'm great. I have the white blood cell count of a health man, with lots of germ-fighting neutrophils. My fevers are gone, my neuropothy is feeling better. The only other issue is my feet and lower legs are very swollen. I think all the time stuck in bed because of the Foley has a lot to do with it, but with all the medications I'm on that may also have something to do with it.
Hope all is well with everyone and I appreciate your letters and cards. Thanks again for everything, and I apologize for talking more about my urinary tract than likely any of you ever wanted to know.
Well after the transplant and the infections and the fevers, I am getting better. I think it was mentioned that my central line was replaced and moved, and this took care of the remainder of the infections. I was on quite a lot of medication at first, and Diane stayed here for a whole week helping me get along. It was really great of her.
At first the worst part was the diarrhea. One night it particular I had it rough, and much of it got on the bed and and the floor and everywhere. Yuck. The nurses and staff cleaned it up, but poor Diane was there through it all. You know it's really love when your wife can put up with, but maybe not clean up, your messy poop.
Within a day or so of that, I started to have the pee problem. Apparently the total body radiation can do a number on your bladder, and it got mine. I was having lots of pain -- banging the walls type pain --and not putting much urine out for my efforts.
Finally the docs and nurses decided I needed what's called a Foley catheter, basically a long rubber tube stuck up your penis into the bladder that is designed to drain the pee. The procedure itself, that is the insertion of the catheter, is painful but not terrible as it sounds, The worst part is having an appliance stuck into one's most sensitive organ!
After having the Foley in for a day or so, I was having these awful bladder spasms. I dare not attempt to describe them. So then it was time for the real fun: Constant bladder irrigation. This involved removing the existing catheter (Ouch!) and inserting a larger and more complicated-looking catheter that the nurses aptly called it the "garden hose." Once inserted, one of the lines into this catheter was connected to giant three-liter bags of sterile water, on an additional pole I might add. This combined with my natural pee was evacuated from my bladder through the Foley. Lots of fun, right?
Anyway, I had this arrangement for about a week, and it sucked as much as any of the treatments I've had so far. It was, however, effective. The constant irrigation was stopped Friday and the Foley was removed I am doing OK without it, except for a seemingly constant need to pee. We're getting beyond that, though.
Other than the the bladder Issue, I'm great. I have the white blood cell count of a health man, with lots of germ-fighting neutrophils. My fevers are gone, my neuropothy is feeling better. The only other issue is my feet and lower legs are very swollen. I think all the time stuck in bed because of the Foley has a lot to do with it, but with all the medications I'm on that may also have something to do with it.
Hope all is well with everyone and I appreciate your letters and cards. Thanks again for everything, and I apologize for talking more about my urinary tract than likely any of you ever wanted to know.
Sunday, July 01, 2007
weekend recap
Hey all!
This weekend was kind of spacey and full of weird infections and such. I was out of it most of the time, but Di wasn't. She wrote a great recap on her blog, and I didn't think I could do better, so here it is:
http://francescanova.blogspot.com/
Anyway, thanks for your notes and posts and such. Keep 'em coming.
-Matt
This weekend was kind of spacey and full of weird infections and such. I was out of it most of the time, but Di wasn't. She wrote a great recap on her blog, and I didn't think I could do better, so here it is:
http://francescanova.blogspot.com/
Anyway, thanks for your notes and posts and such. Keep 'em coming.
-Matt
Saturday, June 23, 2007
The "anticlimactic" climactic transplant
So I successfully was transfused Friday with my donor's stem cells. The procedure was quite odd; one lady from the land of frozen cells came up, took the 4 bags of stem cells out of the liquid nitrogen with tongs, and thawed them one by one in a water bath brought into the room for that purpose. It was quite a system, actually. The nurse simply ran the cells into my central line, and when she was finished, another bag was ready. It was pretty cool. And now the donor cells that will grow my new immune systems are swimming around in my body,
What was NOT cool: Earlier that morning about 2 am or maybe 3, it was time for vital signs. This regimen involves a blood pressure reading, a pulse check, an oxygen saturation test, and a temperature reading. Well, at this vitals checkup, I had a fever of about 100.6. This was serious enough that the nurse had to immediately draw blood cultures and send them to the lab.
The good news is that my temp dropped back to normal (or my low version of normal, by 7 a.m
Flash forward now, to my room. The transplant is finished and I'm laying in bed, half comatose and enjoying the fact that all the hubub is over with. So vitals happens again and, to my dismay, the temp reads about 102 ! Scary. and it kept going up, maxing out at about 104 degrees. Yikes!
In the meantime, I was getting the shakes again. Not nearly as bad as a few weeks ago, but bad enough that they wanted to medicate me for the shakes again. In retrospect I think this probably wasn't necessary, and the three shots of demerol stopped the shakes, but also put me out more or less for the whole of Friday afternoon.
By the way, did I tell you I was having bad diarrhea that morning, too? I'll get ot that later.
There was some good news:Dr. Battiwala and Pam, my awesome nurse practitioner stopped by with the results of the blood culture: Strep. The "poo" culture taken friday morning turned out to be CDIFF, one of these bateria that everyone has but those with wacky or weak immune systems are subject to infection. They started me on the appropriate andtibiotics, and even wrote a nurse's judgment dose of Tylenol
Friday was a rough night. Let's just say the diarhhea had a mind (and mess) of its own, the least flattering problem I've had in this whole cancer thing.
Saturday was similarly upsetting. The fever would rise and fall, rise and fall. Dr. Battiwalla suspects that my central line is infected, a guess that makes sense to me. We'll know More Monday, probably, about that particular issue.
Believe it or not there was one more issue Saturday: Painful peeing! Nothing like urinating out blood clots to ruin a guy's day. It got so bad that the nurse eventually decided along with the doctor, that I needed a catheter. Yes, a catheter up the old urethra. Believe it or not the peeing pain was so bad, the catheter insertion pain, though painful was worth the effort. The docs are still not quite sure why I was having the Problem with the peeing pain in the first place2, but this should be more clear in a couple of days.
After all this, I am feeling a lot better today (Sunday) At least things are a bit more under control.
What was NOT cool: Earlier that morning about 2 am or maybe 3, it was time for vital signs. This regimen involves a blood pressure reading, a pulse check, an oxygen saturation test, and a temperature reading. Well, at this vitals checkup, I had a fever of about 100.6. This was serious enough that the nurse had to immediately draw blood cultures and send them to the lab.
The good news is that my temp dropped back to normal (or my low version of normal, by 7 a.m
Flash forward now, to my room. The transplant is finished and I'm laying in bed, half comatose and enjoying the fact that all the hubub is over with. So vitals happens again and, to my dismay, the temp reads about 102 ! Scary. and it kept going up, maxing out at about 104 degrees. Yikes!
In the meantime, I was getting the shakes again. Not nearly as bad as a few weeks ago, but bad enough that they wanted to medicate me for the shakes again. In retrospect I think this probably wasn't necessary, and the three shots of demerol stopped the shakes, but also put me out more or less for the whole of Friday afternoon.
By the way, did I tell you I was having bad diarrhea that morning, too? I'll get ot that later.
There was some good news:Dr. Battiwala and Pam, my awesome nurse practitioner stopped by with the results of the blood culture: Strep. The "poo" culture taken friday morning turned out to be CDIFF, one of these bateria that everyone has but those with wacky or weak immune systems are subject to infection. They started me on the appropriate andtibiotics, and even wrote a nurse's judgment dose of Tylenol
Friday was a rough night. Let's just say the diarhhea had a mind (and mess) of its own, the least flattering problem I've had in this whole cancer thing.
Saturday was similarly upsetting. The fever would rise and fall, rise and fall. Dr. Battiwalla suspects that my central line is infected, a guess that makes sense to me. We'll know More Monday, probably, about that particular issue.
Believe it or not there was one more issue Saturday: Painful peeing! Nothing like urinating out blood clots to ruin a guy's day. It got so bad that the nurse eventually decided along with the doctor, that I needed a catheter. Yes, a catheter up the old urethra. Believe it or not the peeing pain was so bad, the catheter insertion pain, though painful was worth the effort. The docs are still not quite sure why I was having the Problem with the peeing pain in the first place2, but this should be more clear in a couple of days.
After all this, I am feeling a lot better today (Sunday) At least things are a bit more under control.
Tuesday, June 19, 2007
Radiation, new cells and other musings
Nearly halfway through the total body irradiation I am doing well, I think.
No major pain, nausea or tiredness yet, and the only complaint I have really is some muscle soreness, especially in the jaw and a few other places.
The radiation experience is quite odd. I go down twice daily, once about 8:15 and once about 3:30. Most of the time is spent getting me set up in this uncomfortable barstool/metal frame and getting the lead shields (about the size of a deck of cards) situated in the right place. The machine, a large hulking thing about 15 feet away then buzzes on for 6 or 7 minutes, then I am flipped around and the whole thing starts again, except they flip me around and do it on the other side.
I have 5 more treatments, two tomorrow, two Thursday and and then one one more Friday morning. Hopefully I'll be as energetic and enthusiastic then as I am now.
Which leads me to my new stem cells. They showed up yesterday and are safely frozen here at RPCI. This is the last step in everything being complete and I am so excited to be moving forward.
No major pain, nausea or tiredness yet, and the only complaint I have really is some muscle soreness, especially in the jaw and a few other places.
The radiation experience is quite odd. I go down twice daily, once about 8:15 and once about 3:30. Most of the time is spent getting me set up in this uncomfortable barstool/metal frame and getting the lead shields (about the size of a deck of cards) situated in the right place. The machine, a large hulking thing about 15 feet away then buzzes on for 6 or 7 minutes, then I am flipped around and the whole thing starts again, except they flip me around and do it on the other side.
I have 5 more treatments, two tomorrow, two Thursday and and then one one more Friday morning. Hopefully I'll be as energetic and enthusiastic then as I am now.
Which leads me to my new stem cells. They showed up yesterday and are safely frozen here at RPCI. This is the last step in everything being complete and I am so excited to be moving forward.
Sunday, June 17, 2007
Getting started
The preparation for my bone marrow transplant begain yesterday, with a strong dose of a chemo called cytoxan.
Cytoxan is one of the oldest and strongest chemotherapies around. It is so strong that I am constantly infused with fluids, which has meant many trips to the bathroom, to which I am staying close by. The reason for the fluids it so my kidneys can excrete the stuff out of my body as quickly as possible.
I made it through yesterday's dose with no major problems. Today's dose has been even better. The good news is today marks what could be my last chemotherapy ever. There will be no chemo after Friday's transplant, after today actually.
Tomorrow starts my first dose of total body irradiation. This is is the one where they shoot photons through my body, flip me around and do the the same on the other side. Common side effects are a lot like chemo, except I may be tired and a bit sunburned. This happens twice daily until Friday morning, when I get my last dose. I'll get my cells Friday afternoon.
Tomorrow also is they day my donor gives her cells. They will be flown to buffalo, mixed with a preservative and frozen, then thawed Friday for the big day.
I am ready to get the transplant. I feel good, and am excited that everything is getting started. It feels like for the first time time that each day I am here is one day closer to to the day I get out, and that is something to wake up and work towards every morning.
Cytoxan is one of the oldest and strongest chemotherapies around. It is so strong that I am constantly infused with fluids, which has meant many trips to the bathroom, to which I am staying close by. The reason for the fluids it so my kidneys can excrete the stuff out of my body as quickly as possible.
I made it through yesterday's dose with no major problems. Today's dose has been even better. The good news is today marks what could be my last chemotherapy ever. There will be no chemo after Friday's transplant, after today actually.
Tomorrow starts my first dose of total body irradiation. This is is the one where they shoot photons through my body, flip me around and do the the same on the other side. Common side effects are a lot like chemo, except I may be tired and a bit sunburned. This happens twice daily until Friday morning, when I get my last dose. I'll get my cells Friday afternoon.
Tomorrow also is they day my donor gives her cells. They will be flown to buffalo, mixed with a preservative and frozen, then thawed Friday for the big day.
I am ready to get the transplant. I feel good, and am excited that everything is getting started. It feels like for the first time time that each day I am here is one day closer to to the day I get out, and that is something to wake up and work towards every morning.
Tuesday, June 12, 2007
Great news
Simply put, my latest bone marrow biopsy has turned out to show no leukemia.
This is the best news we could ask for.
Having no leukemia in my bone marrow, or at least testing negative for it, gives me much improves odds of a successful transplant. That, coupled with my impressive performance results from all accounts, means I am now in more or less the best shape possible going into the transplant procedure.
It makes the month I've been in the hospital completely worthwhile.
The process starts Friday, with a family meeting convening the BMT team, Diane, mom and I. I will start my chemo Saturday, then total body irradiation, 9 doses between Monday and Friday. I will get the cells Friday afternoon.
The news was delivered by Trisha Doucette, my preferred nurse practitioner here an and a great, consistent and compassionate clinician who also performed the biopsy. She was very glad to give me some good news. Barb was here, too and did a great job of letting Trisha have her moment.
Adding to the good day, Dr. Wexlar acceded to my request and has allowed me off-unit privileges until Friday. I will also be enjoying some off-campus food thanks to Mom and Diane over the next few days.
This is all quite a blessing and I am very grateful for all of these positive developments.
This is the best news we could ask for.
Having no leukemia in my bone marrow, or at least testing negative for it, gives me much improves odds of a successful transplant. That, coupled with my impressive performance results from all accounts, means I am now in more or less the best shape possible going into the transplant procedure.
It makes the month I've been in the hospital completely worthwhile.
The process starts Friday, with a family meeting convening the BMT team, Diane, mom and I. I will start my chemo Saturday, then total body irradiation, 9 doses between Monday and Friday. I will get the cells Friday afternoon.
The news was delivered by Trisha Doucette, my preferred nurse practitioner here an and a great, consistent and compassionate clinician who also performed the biopsy. She was very glad to give me some good news. Barb was here, too and did a great job of letting Trisha have her moment.
Adding to the good day, Dr. Wexlar acceded to my request and has allowed me off-unit privileges until Friday. I will also be enjoying some off-campus food thanks to Mom and Diane over the next few days.
This is all quite a blessing and I am very grateful for all of these positive developments.
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