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.
Monday, June 11, 2007
In or out?
Written today after a weekend of A: being told (Friday) I would be able to go home for a few days, then B. finding out that that wasn't allowed (Monday), then being given the option of staying locally but being discharged. A basic disagreement between the BMT team who will be taking over my care friday, and the leukemia team who is charged with keeping me here in the meantime. I didn't start this fiasco, but this is my reaction, written in an email to a good friend who asked what was up:
After all, I'm going to stay here. Apparently it's OK for me to leave and stay locally, but what's the point? The risk of leaving is significant, and if I can't go home, it's just not worth it. If it's too dangerous to go to Vestal, I guess I'll just have to stay. Dr. McCarthy is quite persuasive and he did visit me again this afternoon. I of course offered the quite reasonable (to diane and I) alternative of a day pass --get checked up in the morning, head out and drive around with diane, etc, wearing a mask at all times -- but apparently this is neither realistic nor acceptable to insurance companies. Sigh. He did acceed to me heading off the unit to the lobby/indoor walkways of the hospital wearing a mask, but I'm waiting for confirmation on even that. Someone is supposed to return this afternoon. You're right. The whole pissing contest should have not been revealed to me. A simple conversation with the BMT team last week would have discovered the issue, which frankly they had brought up before, at least Battiwala did. I was well, not perfectly happy, but eager and excited about the transplant last week, and i've had my little cry and my little tantrums and I'm sure by tomorrow I'll feel better. This isn't the first time such a contest has taken place in front of me, and I'm frankly a bit sick of the whole fiasco.
After all, I'm going to stay here. Apparently it's OK for me to leave and stay locally, but what's the point? The risk of leaving is significant, and if I can't go home, it's just not worth it. If it's too dangerous to go to Vestal, I guess I'll just have to stay. Dr. McCarthy is quite persuasive and he did visit me again this afternoon. I of course offered the quite reasonable (to diane and I) alternative of a day pass --get checked up in the morning, head out and drive around with diane, etc, wearing a mask at all times -- but apparently this is neither realistic nor acceptable to insurance companies. Sigh. He did acceed to me heading off the unit to the lobby/indoor walkways of the hospital wearing a mask, but I'm waiting for confirmation on even that. Someone is supposed to return this afternoon. You're right. The whole pissing contest should have not been revealed to me. A simple conversation with the BMT team last week would have discovered the issue, which frankly they had brought up before, at least Battiwala did. I was well, not perfectly happy, but eager and excited about the transplant last week, and i've had my little cry and my little tantrums and I'm sure by tomorrow I'll feel better. This isn't the first time such a contest has taken place in front of me, and I'm frankly a bit sick of the whole fiasco.
Tuesday, June 05, 2007
Feelin' good in the Neighborhood.
Though my blood counts don't seem to be reflecting it, (yet!) I'm feeling better yesterday and today than I've felt in weeks.
A few things likely to have contributed to this: Chemo done (for now) Blood infection gone, heavy anti-blood infection medicine stopped, and general recovery from the heavy amount of treatment. Also, I was a bit dehydrated over the weekend and have gotten lots of fluids and two (count 'em!) TWO units of red cells since the weekend. Apparently the slight dehydration falsely lowered my RBC count and therefore my hemoglobin, the stuff in your blood that carries oxygen. Hence, with adequate hemoglobin, my mood and health improves.
Oh, and tomorrow celebrates four weeks here. Yippee! This is sarcasm, of course.
Honestly though, I'm feeling a lot better. And eating! Nausea has gone away, food is tasting like food, such as it is here. But I've had dreams of yummy meals I haven't had in quite awhile. This is good, as I need to build my weight before transplant.
Speaking of transplant, mine's scheduled for the 22nd. My donor showed up for her pre-transplant workup yesterday, which is good news. The plan is for the cells to be harvested on the 18th, then cryogenically preserved, that is, frozen until the day I get them. It seems like just around the corner now.
One other thing that has improved my mood and temperament this week: I fired the residents. If you're not privy to hospital care, or even if you are, you may not be aware that medical students are often responsible for evaluating patients. So it is the case with Roswell Park. What you may not know is that you can request to see real, live professionals instead. In my case, I have established a good relationship with the nurse practitioners on the leukemia team here, but wasn't seeing them up until this week. Finally, after discussion with a good friend, I told Dr. Wang on Sunday that I would prefer to see the NPs in the morning and then whatever doctor that was on service for rounds later in the day.
The result? I am working with my preferred NP in the leukemia team, who knows me and my case inside and out, is willing, able and eager to go to bat for me with the doctors and generally is competent. This is important to me, as I am fighting a pretty tough battle here, and having one more competent person on my side means I'm closer to my goal of getting well.
A few things likely to have contributed to this: Chemo done (for now) Blood infection gone, heavy anti-blood infection medicine stopped, and general recovery from the heavy amount of treatment. Also, I was a bit dehydrated over the weekend and have gotten lots of fluids and two (count 'em!) TWO units of red cells since the weekend. Apparently the slight dehydration falsely lowered my RBC count and therefore my hemoglobin, the stuff in your blood that carries oxygen. Hence, with adequate hemoglobin, my mood and health improves.
Oh, and tomorrow celebrates four weeks here. Yippee! This is sarcasm, of course.
Honestly though, I'm feeling a lot better. And eating! Nausea has gone away, food is tasting like food, such as it is here. But I've had dreams of yummy meals I haven't had in quite awhile. This is good, as I need to build my weight before transplant.
Speaking of transplant, mine's scheduled for the 22nd. My donor showed up for her pre-transplant workup yesterday, which is good news. The plan is for the cells to be harvested on the 18th, then cryogenically preserved, that is, frozen until the day I get them. It seems like just around the corner now.
One other thing that has improved my mood and temperament this week: I fired the residents. If you're not privy to hospital care, or even if you are, you may not be aware that medical students are often responsible for evaluating patients. So it is the case with Roswell Park. What you may not know is that you can request to see real, live professionals instead. In my case, I have established a good relationship with the nurse practitioners on the leukemia team here, but wasn't seeing them up until this week. Finally, after discussion with a good friend, I told Dr. Wang on Sunday that I would prefer to see the NPs in the morning and then whatever doctor that was on service for rounds later in the day.
The result? I am working with my preferred NP in the leukemia team, who knows me and my case inside and out, is willing, able and eager to go to bat for me with the doctors and generally is competent. This is important to me, as I am fighting a pretty tough battle here, and having one more competent person on my side means I'm closer to my goal of getting well.
Saturday, June 02, 2007
Giving the gift of Platelets
My mother-in-law Kathy and her husband Mike visited today; Kathy came specifically to donate platelets.
Diane, of course and thank goodness was here too, so it was quite a busy day in 5E Room 20.
Kathy apparently had quite a time giving platelets. I am told the donation center hooked her up to this big machine, took her blood out, harvested the platelets and returned it to her body. She was hooked up for an hour and 40 minutes, which seems like a long time to be hooked up to anything, unless you're used to chemotherapy and getting blood transfusions. She said the needle hurt quite a bit towards the end, and she had some discomfort in her feet. Other than that and some quivering lips and a bit of a chill, she made it through more or less unscathed. At least that's what she told me.
I am doing better than a week ago. Almost constant antibiotics (2 different kinds three times a day) have made that blood infection retreat. Blood counts haven't come up, and are really low, but we didn't expect them to come up yet either. I will continue on the antibiotics for a few more days however, as there is a prescribed time I must take them. Fine with me...that infection was no fun at all.
Got some weird news about the transplant Wednesday. The donor had to reschedule her workup for Monday...some kind of last minute problem. Made me a little bit nervous, but I understand people's lives can be tricky sometimes. No more changes though! A patient here could do with some solid, predictable news for once.
The latest on a date for my transplant is June 22. Seems like it's almost there now. I'm just focusing on getting there, and then we'll worry about what comes after.
Sorry that I haven't put a post up in a few days. Some nice comments in the meantime. Thanks!
Diane, of course and thank goodness was here too, so it was quite a busy day in 5E Room 20.
Kathy apparently had quite a time giving platelets. I am told the donation center hooked her up to this big machine, took her blood out, harvested the platelets and returned it to her body. She was hooked up for an hour and 40 minutes, which seems like a long time to be hooked up to anything, unless you're used to chemotherapy and getting blood transfusions. She said the needle hurt quite a bit towards the end, and she had some discomfort in her feet. Other than that and some quivering lips and a bit of a chill, she made it through more or less unscathed. At least that's what she told me.
I am doing better than a week ago. Almost constant antibiotics (2 different kinds three times a day) have made that blood infection retreat. Blood counts haven't come up, and are really low, but we didn't expect them to come up yet either. I will continue on the antibiotics for a few more days however, as there is a prescribed time I must take them. Fine with me...that infection was no fun at all.
Got some weird news about the transplant Wednesday. The donor had to reschedule her workup for Monday...some kind of last minute problem. Made me a little bit nervous, but I understand people's lives can be tricky sometimes. No more changes though! A patient here could do with some solid, predictable news for once.
The latest on a date for my transplant is June 22. Seems like it's almost there now. I'm just focusing on getting there, and then we'll worry about what comes after.
Sorry that I haven't put a post up in a few days. Some nice comments in the meantime. Thanks!
Monday, May 28, 2007
Visitors and chemo
Well today was a different day. Dad drove up really early this morning and got here at 10, stayed to 4 p.m. It was great to see him. We talked about golf and Binghamton gossip and work and all the usual stuff. Lots of fun and I really appreciated having him come! I think he got a different impression of my stay then he had when he came up, which is good I think. Mom will be coming up tomorrow and staying till thursday or friday, which means I'll have visitors all week! What a blessing.
I am right now getting dose #3 of the clofarabine, which I am tolerating well and which is hopefully making quick work of my leukemia cells. Annoying thing is they insist on keeping me hooked up to a blood pressure cuff throughout the chemo, which is annoying.The good news is just two more doses and I'm done--and hopefully the leukemia is, too!
Hope all is well in your world.
-Matt
I am right now getting dose #3 of the clofarabine, which I am tolerating well and which is hopefully making quick work of my leukemia cells. Annoying thing is they insist on keeping me hooked up to a blood pressure cuff throughout the chemo, which is annoying.The good news is just two more doses and I'm done--and hopefully the leukemia is, too!
Hope all is well in your world.
-Matt
Sunday, May 27, 2007
quite a few days
let me run down friday. All has been better since then.
Friday:
9.am: eating breakfast. Resident comes in, Checks me out. Mentions that I had a small fevel overnight, wants a blood culture.
9:10 am: I start to get cold. Shaking. Bad shaking. Shaking so bad I can't stop my legs from shaking. Call nurse in. She pages doctor for drug relief.
9:13 am: Mom walks in. She did great. Didn't pass out or anything!
9:25 am: Nurse (finally) comes in with big syringe. Injects the demerol. Painful shaking stops. Epsiode over. Scary as hell!
As it turns out I had a blood infection. Some sort of staph infection, particular to hospitals. Great. As if I didn't have enough to worry about, now I get an infection FROM the hospital. Not cool.
The whole scene repeated itself about 6 hours later, dispite a different IV antibiotic. Same shakes, same nurse, same demerol, same relief. This time one of the nurse practitioners I knew from the outpatient floors stopped in right during the shakes. That was fun, trying to make conversation with her
5:30 p.m. Diane arrives. There is much rejoicing!
7:30 p.m. second dose of high octane antibiotics. No more fever.
And as if it never started, crisis over. No more fever friday. No more fever all weekend.
More to report later.
...............................
Friday:
9.am: eating breakfast. Resident comes in, Checks me out. Mentions that I had a small fevel overnight, wants a blood culture.
9:10 am: I start to get cold. Shaking. Bad shaking. Shaking so bad I can't stop my legs from shaking. Call nurse in. She pages doctor for drug relief.
9:13 am: Mom walks in. She did great. Didn't pass out or anything!
9:25 am: Nurse (finally) comes in with big syringe. Injects the demerol. Painful shaking stops. Epsiode over. Scary as hell!
As it turns out I had a blood infection. Some sort of staph infection, particular to hospitals. Great. As if I didn't have enough to worry about, now I get an infection FROM the hospital. Not cool.
The whole scene repeated itself about 6 hours later, dispite a different IV antibiotic. Same shakes, same nurse, same demerol, same relief. This time one of the nurse practitioners I knew from the outpatient floors stopped in right during the shakes. That was fun, trying to make conversation with her
5:30 p.m. Diane arrives. There is much rejoicing!
7:30 p.m. second dose of high octane antibiotics. No more fever.
And as if it never started, crisis over. No more fever friday. No more fever all weekend.
More to report later.
...............................
Thursday, May 24, 2007
Try try again
Lousy news: Despite my depressed cell counts and 12 doses of new chemotherapy in 6 days, my bone marrow still has about 90% leukemic cells. This news came this afternoon after yesterday's bone marrow biopsy. Barb anderson and Dr. Fernandez (on service this week) came up to give me the news about 2:00 p.m.
When I saw the both of them, I knew it was bad news.
Onward and upward: I will be starting a new drug just as soon as we can get it. It's called clofarabine, and has worked well for relapsed childhood ALL and in one case just recently in a relapsed adult ALL case here at Roswell.
The other good news is my transplant is coming.
The other bad news is that there's no realistic chance of seeing home before doing all this.
I was sad when I heard. Now I'm mostly pissed off. Now I'm just ready to kick some cancer butt.
More details will come when I know them.
-Matt
When I saw the both of them, I knew it was bad news.
Onward and upward: I will be starting a new drug just as soon as we can get it. It's called clofarabine, and has worked well for relapsed childhood ALL and in one case just recently in a relapsed adult ALL case here at Roswell.
The other good news is my transplant is coming.
The other bad news is that there's no realistic chance of seeing home before doing all this.
I was sad when I heard. Now I'm mostly pissed off. Now I'm just ready to kick some cancer butt.
More details will come when I know them.
-Matt
Wednesday, May 23, 2007
Road Trip!
Wondering what to do for your summer vacation? Why not join me up here in buffalo?
Often times peoples offices shut down or perhaps you already have time taken off for this week.
I would be grateful if a few of you used that time to come visit me here in buffalo. Aside from experiencing the beautiful insides of Roswell Park Cancer institute, you will also be within a stone's throw of the home of the original Buffalo Chicken Wings, the Anchor Bar. A short drive away is Niagara Falls. The story goes that the Canadian side is much better, so bring your passport!
I even know a place where you can stay for $20 per person, per night. What a steal!
In any case, I'll be up here for sure then, recovering from my bone marrow transplant and would love to have some company. My parents are taking a well-deserved vacation week, and Di will be coming up for the weekend. It would be nice to see some of you during that week, if at all possible.
Talk to you soon!
-Matt
Often times peoples offices shut down or perhaps you already have time taken off for this week.
I would be grateful if a few of you used that time to come visit me here in buffalo. Aside from experiencing the beautiful insides of Roswell Park Cancer institute, you will also be within a stone's throw of the home of the original Buffalo Chicken Wings, the Anchor Bar. A short drive away is Niagara Falls. The story goes that the Canadian side is much better, so bring your passport!
I even know a place where you can stay for $20 per person, per night. What a steal!
In any case, I'll be up here for sure then, recovering from my bone marrow transplant and would love to have some company. My parents are taking a well-deserved vacation week, and Di will be coming up for the weekend. It would be nice to see some of you during that week, if at all possible.
Talk to you soon!
-Matt
Tuesday, May 22, 2007
Some good news!
Some good news to report today:
My donor is still around, still alive and still committed. She (a 23-year-old) is going in next wednesday for her pre-donation workup. Though this means I will definitely not be having my transplant the first week in june, at least it means we know she's out there and responsive and still ready to give. Most likely that means the transplant will be given sometime the second full week of June.
Tomorrow is also a very important day. I will be getting a bone marrow biopsy. With any luck it will show no disease. Let us please knock on wood! If I have no more disease, and my blood counts start coming up next week, there's a chance I may be able to go home for a few days. This possibiliy is very attractive to me, to spend a few days to recharge my batteries with my wife, my cat and the rest of my family. I would be very grateful indeed.
Went downstairs today and had a consultation with the radiation doctor. A big part of the "condiditoning" for the transplant is total body radiation. It doesn't sound like a whole lot of fun. Of course, I don't think anyone could imagine having all of their bone marrow being killed as fun. But basically that's the function of the radiation. With any luck it will kill any remaining leukemic cells, too. We want as few of those buggers as possible when I go in for the transplant.
My donor is still around, still alive and still committed. She (a 23-year-old) is going in next wednesday for her pre-donation workup. Though this means I will definitely not be having my transplant the first week in june, at least it means we know she's out there and responsive and still ready to give. Most likely that means the transplant will be given sometime the second full week of June.
Tomorrow is also a very important day. I will be getting a bone marrow biopsy. With any luck it will show no disease. Let us please knock on wood! If I have no more disease, and my blood counts start coming up next week, there's a chance I may be able to go home for a few days. This possibiliy is very attractive to me, to spend a few days to recharge my batteries with my wife, my cat and the rest of my family. I would be very grateful indeed.
Went downstairs today and had a consultation with the radiation doctor. A big part of the "condiditoning" for the transplant is total body radiation. It doesn't sound like a whole lot of fun. Of course, I don't think anyone could imagine having all of their bone marrow being killed as fun. But basically that's the function of the radiation. With any luck it will kill any remaining leukemic cells, too. We want as few of those buggers as possible when I go in for the transplant.
Monday, May 21, 2007
Beginning the answer week
Well Diane and I decided today would start the week of answers. I have a few to report:
Insurance: A concern Diane and I had was insurance. Apparently she sees patients who's insurance has a maximum yearly hospitalization stay (commonly 30 days) and a maximum lifetime payout. I called BCBS and was glad to find no issue here; as long as Roswell keeps calling, they'll keep paying. Thank goodness for one less thing to worry about.
Transplant: No dice here. Asked the transplant coordinator today, who said she just emailed the bone marrow registry. We still don't have a date! It's been nearly a week since this person agreed to give the transplant. Please just get back to us so we know what to do. A main problem is that if we don't hear soon, the first date for transplant in the first full week of June will be impossible.
Going home:
A hope of mine is to go home, even for a few days before starting the transplant procedure. it's a long time in the hospital, then several months before I'll be able to go home even when I'm outpatient. In order for this to happen my counts have to recover (they're not yet) and I have to be generally healthy. We'll see. Hopefully my counts will recover early next week and I'll have a few days at home. If the donor decides on a later date --or backs out entirely--I'd almost surely go home. But it would be nice to get the show on the road.
Other than that just keep-on keepin-on here at RPCI. I hate being cooped up inside, so far away from family for so long. Good news is Mom's coming up wednesday thru Friday, and Di will be here Friday afternoon. Something to look forward to, anyway.
Hope all is well in your world.
Insurance: A concern Diane and I had was insurance. Apparently she sees patients who's insurance has a maximum yearly hospitalization stay (commonly 30 days) and a maximum lifetime payout. I called BCBS and was glad to find no issue here; as long as Roswell keeps calling, they'll keep paying. Thank goodness for one less thing to worry about.
Transplant: No dice here. Asked the transplant coordinator today, who said she just emailed the bone marrow registry. We still don't have a date! It's been nearly a week since this person agreed to give the transplant. Please just get back to us so we know what to do. A main problem is that if we don't hear soon, the first date for transplant in the first full week of June will be impossible.
Going home:
A hope of mine is to go home, even for a few days before starting the transplant procedure. it's a long time in the hospital, then several months before I'll be able to go home even when I'm outpatient. In order for this to happen my counts have to recover (they're not yet) and I have to be generally healthy. We'll see. Hopefully my counts will recover early next week and I'll have a few days at home. If the donor decides on a later date --or backs out entirely--I'd almost surely go home. But it would be nice to get the show on the road.
Other than that just keep-on keepin-on here at RPCI. I hate being cooped up inside, so far away from family for so long. Good news is Mom's coming up wednesday thru Friday, and Di will be here Friday afternoon. Something to look forward to, anyway.
Hope all is well in your world.
Friday, May 18, 2007
doing better, a bit in limbo
The good news: A bad rash and a scratched cornea are clearing up. I was out pretty much all day yesterday and a bit of the day before with a painful and very annoing left eye. Not sure how I did it, but it took a visit from the opthamalogist, who stuffed it full of ointment and bandaged it, to fix. I'm about 80% better today, which is good because I want to be 100% for when Diane comes up today! As for the rash, it's beeen pretty annoying. Nasty looking red rash all over my torso and arms. Various medications have been blamed, but the good news is it's clearing up.
The bad, or, in my case, just anxious news: We're still waiting for my donor to tell us when she will donate the stem cells that will save my life. She has a choice of the first, second or third week in june. I would get the cells one of those weeks after a "conditioning" chemotherapy regimen and 5 radiation treatments that will kill all the marrow in my bones. I'm sure it's difficult to arrange the time off, etc, but it would be nice to go into this weekend knowing when the ultimate date was. But can't do much about that yet, so we'll just keep positive and hope for the earliest date possible.
Other than that just hanging around. Mom was here Wednesday through this morning. Nice to have her here . Time passes strangely in the hospital. Hard to believe I've been in here a week and a half already.
Thanks for your encouraging posts.
The bad, or, in my case, just anxious news: We're still waiting for my donor to tell us when she will donate the stem cells that will save my life. She has a choice of the first, second or third week in june. I would get the cells one of those weeks after a "conditioning" chemotherapy regimen and 5 radiation treatments that will kill all the marrow in my bones. I'm sure it's difficult to arrange the time off, etc, but it would be nice to go into this weekend knowing when the ultimate date was. But can't do much about that yet, so we'll just keep positive and hope for the earliest date possible.
Other than that just hanging around. Mom was here Wednesday through this morning. Nice to have her here . Time passes strangely in the hospital. Hard to believe I've been in here a week and a half already.
Thanks for your encouraging posts.
Tuesday, May 15, 2007
Donor found!
Good news:
One of the two donors who were already typed to match my genetics has agreed to go through with the transplant!
I found this out after discovering earlier in the day that the other donor backed out. It was especially gratifying when the transplant coordinator called me back a few hours later with the excellent news.
I don't know much else, a date hasn't been picked or anything like that. But surely this will mean a faster transition from chemotherapy to transplant, as all the preliminary testing has been completed.
Such good news to get after a pretty tough week. Makes the bad stuff worthwhile.
One of the two donors who were already typed to match my genetics has agreed to go through with the transplant!
I found this out after discovering earlier in the day that the other donor backed out. It was especially gratifying when the transplant coordinator called me back a few hours later with the excellent news.
I don't know much else, a date hasn't been picked or anything like that. But surely this will mean a faster transition from chemotherapy to transplant, as all the preliminary testing has been completed.
Such good news to get after a pretty tough week. Makes the bad stuff worthwhile.
Monday, May 14, 2007
A fine weekend
Today was a bit of a reality check as Di got up early and made her way home.
We had a fine weekend together. Di showed up friday night and slept here. She had the experience, just like me, of getting up several times during the evening. What a trooper!
Between that and the fold-out bed that looked pretty tough to sleep in, I wonder if she got any sleep at all friday night.
Meanwhile, my treatment was going just as planned. White blood counts continue to drop, those nasty blast counts are dropping too. Today my white count was at 1.0 with a blast percentage of 8! This is the lowest yet, and good news indeed.
Saturday Mom and Dad came to visit. They took turns because jake the dog was waiting in the car. It was nice to see them. Dad was his old self--a bit nervous, like everyone. As hard as it is on me, it's got to be even more difficult for those who are taking care of things in my stead.
Later on saturday I had to have platelets. For some reason, the usual hydrocortizone and benadryl cocktail they gave me didn't jibe with everything else I was taking, because I was a complete basket case for about 9 hours. I could barely keep awake, and when I was awake I was just about unintelligble.
Sunday, Di and I had a nice day. We slept in and Di filled in all my menus for the week. Later that night we sat together and watched a movie, and it was almost like we were home again.Not exactly, but the closest we're going to get for awhile.
And I guess that's the hardest thing about all this, is being separated from my family, from my home, from everyhting I love so much. And right now I don't have a good idea when I'll be getting back there.
So today has been about getting through that worry. I've had a pit in my stomach all morning, and I just don't know how to make it go away. I know I'll get back there, but I wish I had a good idea of when and how. That's what's bugging me today.
We had a fine weekend together. Di showed up friday night and slept here. She had the experience, just like me, of getting up several times during the evening. What a trooper!
Between that and the fold-out bed that looked pretty tough to sleep in, I wonder if she got any sleep at all friday night.
Meanwhile, my treatment was going just as planned. White blood counts continue to drop, those nasty blast counts are dropping too. Today my white count was at 1.0 with a blast percentage of 8! This is the lowest yet, and good news indeed.
Saturday Mom and Dad came to visit. They took turns because jake the dog was waiting in the car. It was nice to see them. Dad was his old self--a bit nervous, like everyone. As hard as it is on me, it's got to be even more difficult for those who are taking care of things in my stead.
Later on saturday I had to have platelets. For some reason, the usual hydrocortizone and benadryl cocktail they gave me didn't jibe with everything else I was taking, because I was a complete basket case for about 9 hours. I could barely keep awake, and when I was awake I was just about unintelligble.
Sunday, Di and I had a nice day. We slept in and Di filled in all my menus for the week. Later that night we sat together and watched a movie, and it was almost like we were home again.Not exactly, but the closest we're going to get for awhile.
And I guess that's the hardest thing about all this, is being separated from my family, from my home, from everyhting I love so much. And right now I don't have a good idea when I'll be getting back there.
So today has been about getting through that worry. I've had a pit in my stomach all morning, and I just don't know how to make it go away. I know I'll get back there, but I wish I had a good idea of when and how. That's what's bugging me today.
Friday, May 11, 2007
Taking the field
The report from the cancer front shows team chemo is making good progress at beating down those nasty leukemic cells!
The heavy doses of cytarabine (ever 12 hours, on the 12 hour of 9:00) are coming fast and hungry, and making mincemeat of my white blood cell count. On wednesday it was about 6.4. Yesterday, 4.1. Today, 2.2! And the blast count is coming down as well, all the way today to about 40%. Dr Wang said, in her clinical yet eagerly nonchalant way, "I am very pleased." So am I!
I am adjusting to life in the hospital very well. Sleeping OK but it's hard when you get interrupted every few hours for a vitals check. The other onerous part, peeing into a urinal, just irks me. Oh, for a big, unlimited toilet bowl!
One hiccup is this pain in my side. No pun intended, but boy is that a bad one. We found out today after some poking and prodding between myself and the resident that the pain is only skin deep. Dr. Wang prescribed a patch containing lidocaine. We hope it's just a pinched nerve, because there's nothing to suggest it's in any way related to the leukemia, especially since pressing hard on the site means no more or less pain than just brushing up against it.
My uncle Ron and his wife Laurie dropped by today. The were visiting Ron's son Kevin and family in Syracuse, so made a quick jaunt up here. It's fun to see the similarities between Ron and my dad. I am not, however going to point out the similarities, for the sake of family harmony. ;-) I really enjoyed chatting with them today.
As I write this, Diane is on her way here. Can't wait to see her. She'll be hanging out here in my room all weekend, and plans to sleep on the fold-out bed they have placed in the room. Meanwhile, Mom and Dad are coming up Saturday for a brief visit. Should be fun!
Oh, and in the final bit of good news, Kevin the PT sensei is coming by anytime now to do a workout. Should be fun!
Talk to you all soon.
The heavy doses of cytarabine (ever 12 hours, on the 12 hour of 9:00) are coming fast and hungry, and making mincemeat of my white blood cell count. On wednesday it was about 6.4. Yesterday, 4.1. Today, 2.2! And the blast count is coming down as well, all the way today to about 40%. Dr Wang said, in her clinical yet eagerly nonchalant way, "I am very pleased." So am I!
I am adjusting to life in the hospital very well. Sleeping OK but it's hard when you get interrupted every few hours for a vitals check. The other onerous part, peeing into a urinal, just irks me. Oh, for a big, unlimited toilet bowl!
One hiccup is this pain in my side. No pun intended, but boy is that a bad one. We found out today after some poking and prodding between myself and the resident that the pain is only skin deep. Dr. Wang prescribed a patch containing lidocaine. We hope it's just a pinched nerve, because there's nothing to suggest it's in any way related to the leukemia, especially since pressing hard on the site means no more or less pain than just brushing up against it.
My uncle Ron and his wife Laurie dropped by today. The were visiting Ron's son Kevin and family in Syracuse, so made a quick jaunt up here. It's fun to see the similarities between Ron and my dad. I am not, however going to point out the similarities, for the sake of family harmony. ;-) I really enjoyed chatting with them today.
As I write this, Diane is on her way here. Can't wait to see her. She'll be hanging out here in my room all weekend, and plans to sleep on the fold-out bed they have placed in the room. Meanwhile, Mom and Dad are coming up Saturday for a brief visit. Should be fun!
Oh, and in the final bit of good news, Kevin the PT sensei is coming by anytime now to do a workout. Should be fun!
Talk to you all soon.
Thursday, May 10, 2007
Back in the hospital...again
Though we were hoping I might not have to be admitted yesterday, my blood counts had changed so much the bad way that Dr. Wang insisted on admitting me immediately.
Between Monday and Wednesday, my white cell count went from 4.4 to 6.8. Though the "blast" count did decrease, it did not decrease enough. Blasts are measured in a percentage of total white blood cells. Though the blast count dropped 10% or so, the big jump in my WBC meant I actually had more blasts-- a lot more
The nelarabine -- that new fancy drug that gave everyone such a pain -- didn't work.
At first there was some question whether a room was available. (this was about 4:00 pm. yesterday). But I had gone upstairs for a routine EKG and before I could get tested I was told a room was open.
Some advice to you if you ever plan to visit: Do not, I repeat, DO NOT park or leave the parking lot at about 4:30 pm. What a zoo. To make matters worse, I accidentally picked the "monthly only" lane, which meant I had to endure angry, tired RPCI employees shaking their fists and other appendages at me. Imagine the alligator Scion backing up against traffic, me having to drive all the way around the parking lot again, just so I could leave the car at KGH, where mom stayed.
Once in the hospital, everything was easier. My room wasn't quite ready, so I decided to soak in the beautiful weather and fresh air down in the park just outside the hospital. This was a good idea. It was the last time I'll breathe outside air for a long time!
Before too long I was in the hospital and started treatment. Nice thing is the nurses still remembered me, and I'm on the same floor I was before: 5 E Room 20. It's kind of a big, corner room with a fantastic view of....the physical plant. Oh well. At least I have the room.
The treatment started about 9 p.m. It was one of 12 doses of cytarabine, also known as Ara-C. I've gotten this before but in much smaller doses. The 12 doses will happen every 12 hours for 6 days. I seem to be tolerating it well so far, and the good news is my WBC went down about 2 whole points since yesterday. I hope this works!
Well, that's about all for now. Hope to hear from you soon!
Between Monday and Wednesday, my white cell count went from 4.4 to 6.8. Though the "blast" count did decrease, it did not decrease enough. Blasts are measured in a percentage of total white blood cells. Though the blast count dropped 10% or so, the big jump in my WBC meant I actually had more blasts-- a lot more
The nelarabine -- that new fancy drug that gave everyone such a pain -- didn't work.
At first there was some question whether a room was available. (this was about 4:00 pm. yesterday). But I had gone upstairs for a routine EKG and before I could get tested I was told a room was open.
Some advice to you if you ever plan to visit: Do not, I repeat, DO NOT park or leave the parking lot at about 4:30 pm. What a zoo. To make matters worse, I accidentally picked the "monthly only" lane, which meant I had to endure angry, tired RPCI employees shaking their fists and other appendages at me. Imagine the alligator Scion backing up against traffic, me having to drive all the way around the parking lot again, just so I could leave the car at KGH, where mom stayed.
Once in the hospital, everything was easier. My room wasn't quite ready, so I decided to soak in the beautiful weather and fresh air down in the park just outside the hospital. This was a good idea. It was the last time I'll breathe outside air for a long time!
Before too long I was in the hospital and started treatment. Nice thing is the nurses still remembered me, and I'm on the same floor I was before: 5 E Room 20. It's kind of a big, corner room with a fantastic view of....the physical plant. Oh well. At least I have the room.
The treatment started about 9 p.m. It was one of 12 doses of cytarabine, also known as Ara-C. I've gotten this before but in much smaller doses. The 12 doses will happen every 12 hours for 6 days. I seem to be tolerating it well so far, and the good news is my WBC went down about 2 whole points since yesterday. I hope this works!
Well, that's about all for now. Hope to hear from you soon!
Sunday, May 06, 2007
Beautiful day!
So I'm back home in Binghamton today and the weather is terrific! So terrific, in fact, I am sitting out here in the sun with Di and posting to my blog. Actually, I'm sitting comfortably and supervising Diane. She's doing a great job, currently ridding the front porch of our yard of the ugly red gravel the former owners spread everywhere. It was an attempt at edging that the meth-addicted couple applied to all of their home improvement projects.
Ir's great to be here! At the beginning, I thought I'd have to stay in buffalo for two weeks., but as it runs out I can head up again Wednesday for more testing. On Monday, I have to get a special blood test at Br. Oncology, at the request of the RPCI doctors and nurses.
The tests this week are very important. What we hope is to see a significant decrease of the bad" cells in by blood called "blasts." These immature white blood cells, generally from leukemic bone marrow, can give a pretty good indication of how the disease is doing. On Friday I had a blast count of 75%. Monday it was 33%. What we are hoping is this new drug, Nelarabine, Will show a trend downwards.
If the nelarabine isn't working (we should know something by late next week) Dr Wang said I will go directly into the hospital as an inpatient. I would get high dose until I went into remission again, or the transplant team and donor would be ready.
So lets all cross our fingers and hope this fancy new drug works!
Meanwhile, it has at least had its side effects. I've been very sleepy. Not sure if this is due to the Nelarabine or the lovely Fentanyl patch that I have been given more my belly and back pain. I any case, the combination of those two drugs and the Dilaudid (an oral narcotic painkiller that I use for "breakthrough" pain) I find myself doing silly things. For example, I can be watching television, and just drift off quickly, not even knowing it. Apparently I make gestures at objects and people in the dream, and sometimes when I realize there is nothing or no one there, I wake up from my dream in a start! To boot, I even mumble incoherent mumblings that make total sense to me, but no sense at all to those listening.
By that measure, you should all be thankful this email is somewhat legible! I even spell most things correctly, given a spell-checker . . .
Other than that, today was great. Had breakfast with my parents and Diane at the Parkway Diner, and then Mom and Dad gave me their new laptop to set up. It's pretty sweet! Good enough to type this blog on anyway.
I'm at home for the next couple days, so feel free to drop by or give me a ring. Though I'm going to Roswell for that important test Wednesday, I can guarantee I'll be around today through Tuesday. After that, as I explained earlier, things are kind of up in the air after that.
Thanks again everyone for your continued support!
Ir's great to be here! At the beginning, I thought I'd have to stay in buffalo for two weeks., but as it runs out I can head up again Wednesday for more testing. On Monday, I have to get a special blood test at Br. Oncology, at the request of the RPCI doctors and nurses.
The tests this week are very important. What we hope is to see a significant decrease of the bad" cells in by blood called "blasts." These immature white blood cells, generally from leukemic bone marrow, can give a pretty good indication of how the disease is doing. On Friday I had a blast count of 75%. Monday it was 33%. What we are hoping is this new drug, Nelarabine, Will show a trend downwards.
If the nelarabine isn't working (we should know something by late next week) Dr Wang said I will go directly into the hospital as an inpatient. I would get high dose until I went into remission again, or the transplant team and donor would be ready.
So lets all cross our fingers and hope this fancy new drug works!
Meanwhile, it has at least had its side effects. I've been very sleepy. Not sure if this is due to the Nelarabine or the lovely Fentanyl patch that I have been given more my belly and back pain. I any case, the combination of those two drugs and the Dilaudid (an oral narcotic painkiller that I use for "breakthrough" pain) I find myself doing silly things. For example, I can be watching television, and just drift off quickly, not even knowing it. Apparently I make gestures at objects and people in the dream, and sometimes when I realize there is nothing or no one there, I wake up from my dream in a start! To boot, I even mumble incoherent mumblings that make total sense to me, but no sense at all to those listening.
By that measure, you should all be thankful this email is somewhat legible! I even spell most things correctly, given a spell-checker . . .
Other than that, today was great. Had breakfast with my parents and Diane at the Parkway Diner, and then Mom and Dad gave me their new laptop to set up. It's pretty sweet! Good enough to type this blog on anyway.
I'm at home for the next couple days, so feel free to drop by or give me a ring. Though I'm going to Roswell for that important test Wednesday, I can guarantee I'll be around today through Tuesday. After that, as I explained earlier, things are kind of up in the air after that.
Thanks again everyone for your continued support!
Thursday, May 03, 2007
Mother Superior jumped the gun....
Fentanyl patches are definitely the thing for naggy constant pains.
I found this out yesterday after several days of increasingly worse discomfort in my belly and back. I started talking about the pain to the nurse practitioner and then ultimately Barb Anderson and Dr. Wang. It was a bit scary, and woke me up very early three times in two nights. It was the kind of pain that makes it very difficult to sleep.
In this light, I had a CAT scan and some blood cultures done Tuesday. No signs of infection, no enlarged anything. Kelly told me to continue taking my Dilaudid, and gave me two IV doses of Dilaudid, which was really the thing.
The problem with Dilaudid is the seemed to hit all at once. So Tuesday night, I again fell asleep quite easily, but woke up at two with the bad pain and never could get back to sleep.
Wednesday I finally met with Dr. Wang, who seemed to have a very good idea of what the problem was. Sometimes withleukemia, the body makes so many diseased cells so quickly that they overflow the marrow into the bloodstream. Many times they will end up in the liver, and after poking and prodding she seemed fairly positive that was the case with me. The good news is that this is quite normal for leukemic patients, especially ALL type.
So I left the clinic Wednesday with an appointment Thursday (today as I write this blog!) to have an ultrasound after my chemo. This should tell Dr. Wang much more about the liver or whatever else might be inflamed.
In addition, the good doctor prescribed fentanyl patches for me to use. These deliver 25 micgrograms per hour of fentanyl , a narcotic used very often for cancer patients. I've had it in lolipop form before biopsies. The idea is to quell any pain by having a constant "baseline" of medication in my body. Should I still have acute pain, which I have had but is much less than without the patch, I was instructed to take the Dilaudid every four hours. So far, I'm feeling great! Slept from 10:15 to about 4:30 with no interruptions, which is pretty good for me lately.
Another bit of good news: I'll likely be coming home for a few days, Saturday night through Wednesday morning. As it turns out I have to return to RPCI for a checkup and more tests next Wednesday, but Dr. Wang is fairly positive I can recharge my batteries at home.
One last thing: I know a little more about the next steps of my treatment. The chemo I am taking, Nelarabine, will be administered today and Saturday. I will then merely wait for it to take effect over the two weeks following. On the 21st day I will have a biopsy to determine how many of my cancer cells are left in the marrow. If the results are positive, if the pills have reduced the leukemic cells in a significant way, I will have one more 21-day course of chemo. After that, I would be admitted simply for the biopsy.
If the drug doesn't work so well, they will admit me after the first body as an inpatient and start high dose chemo (they'll really blast my cells!)And as soon as I'm ready in the hospital, they'll do the transplant.
In the meantime, the transplant team is working hard on my donor. They're in contact with him, and i was handed permission slips for BMT research studies, some of which I might actually sign!
Hope all is well in your world
-Matt
I found this out yesterday after several days of increasingly worse discomfort in my belly and back. I started talking about the pain to the nurse practitioner and then ultimately Barb Anderson and Dr. Wang. It was a bit scary, and woke me up very early three times in two nights. It was the kind of pain that makes it very difficult to sleep.
In this light, I had a CAT scan and some blood cultures done Tuesday. No signs of infection, no enlarged anything. Kelly told me to continue taking my Dilaudid, and gave me two IV doses of Dilaudid, which was really the thing.
The problem with Dilaudid is the seemed to hit all at once. So Tuesday night, I again fell asleep quite easily, but woke up at two with the bad pain and never could get back to sleep.
Wednesday I finally met with Dr. Wang, who seemed to have a very good idea of what the problem was. Sometimes withleukemia, the body makes so many diseased cells so quickly that they overflow the marrow into the bloodstream. Many times they will end up in the liver, and after poking and prodding she seemed fairly positive that was the case with me. The good news is that this is quite normal for leukemic patients, especially ALL type.
So I left the clinic Wednesday with an appointment Thursday (today as I write this blog!) to have an ultrasound after my chemo. This should tell Dr. Wang much more about the liver or whatever else might be inflamed.
In addition, the good doctor prescribed fentanyl patches for me to use. These deliver 25 micgrograms per hour of fentanyl , a narcotic used very often for cancer patients. I've had it in lolipop form before biopsies. The idea is to quell any pain by having a constant "baseline" of medication in my body. Should I still have acute pain, which I have had but is much less than without the patch, I was instructed to take the Dilaudid every four hours. So far, I'm feeling great! Slept from 10:15 to about 4:30 with no interruptions, which is pretty good for me lately.
Another bit of good news: I'll likely be coming home for a few days, Saturday night through Wednesday morning. As it turns out I have to return to RPCI for a checkup and more tests next Wednesday, but Dr. Wang is fairly positive I can recharge my batteries at home.
One last thing: I know a little more about the next steps of my treatment. The chemo I am taking, Nelarabine, will be administered today and Saturday. I will then merely wait for it to take effect over the two weeks following. On the 21st day I will have a biopsy to determine how many of my cancer cells are left in the marrow. If the results are positive, if the pills have reduced the leukemic cells in a significant way, I will have one more 21-day course of chemo. After that, I would be admitted simply for the biopsy.
If the drug doesn't work so well, they will admit me after the first body as an inpatient and start high dose chemo (they'll really blast my cells!)And as soon as I'm ready in the hospital, they'll do the transplant.
In the meantime, the transplant team is working hard on my donor. They're in contact with him, and i was handed permission slips for BMT research studies, some of which I might actually sign!
Hope all is well in your world
-Matt
Monday, April 30, 2007
Running the gamut
The funny thing about getting treated at Roswell Park is you get to experience the entire gamut of human competence.
You get the great people, like Dr. Wang, Dr. Baer and Barb, and the nurses and the cafeteria workers (yes, even the cafeteria workers are cool).
But then you get the not so great people, like the pharmacist who , charged with ordering the chemotherapy drug on Friday, sent the order to the drug company, but neglected to stick around for the tracking number.
So me, he of the relapsed Leukemia, did not get the swanky new chemo drug I was expecting today, likely due in my opinion to one person's case of Friday afternoon disease.
You know what friday afternoon disease, is, right? It's closely related to the Monday morning sickness, and cousin of the ever-popular Monday-morning car failure plague that sweeps the nation's office buildings on rainy, cloudy beginnings of the week around the country.
The day wasn't a total wash, however. I did get my fancy new PICC line, a catheter which was threaded into my arm, through my veins and very close to my heart. It looks a lot like my original central line catheter, except it is blue and sticking out of my left arm. It's very attractive.
So, tomorrow I get this new fancy drug (maybe), a long hydration, and hopefully a bit more peace of mind. Time to kill the cancer cells!!
You get the great people, like Dr. Wang, Dr. Baer and Barb, and the nurses and the cafeteria workers (yes, even the cafeteria workers are cool).
But then you get the not so great people, like the pharmacist who , charged with ordering the chemotherapy drug on Friday, sent the order to the drug company, but neglected to stick around for the tracking number.
So me, he of the relapsed Leukemia, did not get the swanky new chemo drug I was expecting today, likely due in my opinion to one person's case of Friday afternoon disease.
You know what friday afternoon disease, is, right? It's closely related to the Monday morning sickness, and cousin of the ever-popular Monday-morning car failure plague that sweeps the nation's office buildings on rainy, cloudy beginnings of the week around the country.
The day wasn't a total wash, however. I did get my fancy new PICC line, a catheter which was threaded into my arm, through my veins and very close to my heart. It looks a lot like my original central line catheter, except it is blue and sticking out of my left arm. It's very attractive.
So, tomorrow I get this new fancy drug (maybe), a long hydration, and hopefully a bit more peace of mind. Time to kill the cancer cells!!
Saturday, April 28, 2007
Relapse
In college, I would have called it dramatic irony.
The last few weeks had been fantastic. I had returned to work, returned to my social life, reassumed the duties and the social connections so important to myself and my family. I'd been greeted by warm, happy people many times a day, people whose warm wishes were met with one response. "I feel great!," I told most everyone. "I feel even better now than I did a year ago.
But I found out on Friday that my leukemia has relapsed.
The worry began Wednesday during a follow up visit to Roswell park for a bone marrow biopsy. Dr. Wang had met with us, and eventually told me that my blood tests revealed that I could not have the biopsy for which we had travelled to Buffalo. My blood counts had not recovered the way they should, and though this was somewhat concerning, at that moment it was more of a clerical problem when it came to the biopsy. The doctors needed to do the biopsy when my counts had reached a certain level, and not before.
We left for home a bit disappointed, but not worried. About 4:30 p.m. Dr. Wang called me on my home phone: There was something weird with the blood tests done earlier that day, and I would need to return to RPCI the next Wednesday, a week before the next scheduled appointment we had made that morning.
I, of course, was concerned. Panic would be a better description. So I got on the phone to Barb Anderson, trusty research nurse, who assured me she would get me into the clinic on Friday for a biopsy.
Barb has this great way of getting things done, and everything was quickly set up for Friday. All that was left was the waiting and the worry. Barb had explained the problem with the blood tests. The tests had revealed 3% lymphoblasts, an immature white blood cell. It is normal for one's body to make one or two of these occasionally, but 3% is at least 3 times what is acceptable for the norm. The lymphoblasts found in blood are often decendents of leukemic stem cells in the marrow. Hence the doctors' concern.
So, Friday morning I got in the Scion about 6 a.m. and headed up to Buffalo. I had decided that no matter what the news, it would be easier on me to keep my head down, get up there, get the news and deal with it. As such, I was worried, but once on the road with Starbucks and the radio, it was just like any other trip.
Dr. Wang performed the Biopsy about 12:00. I have described this procedure before, and Dr. Wang did the often painful operation with patience and expertise, and I had no pain whatsoever.
Beforehand she had explained the plan. If I had a relapse, and the evidence certainly was pointing that way, even from the preliminary tests done Wednesday, I would have to start chemotherapy immediately. Eventually I would need a bone marrow transplant, just as soon as I could get the leukemic cells depressed enough to do the transplant. "You have a lot of treatment ahead of you," she said.
As I was chewing on all of this out in the lobby, calling people and generally nursing my sore backside (the biopsy is done in a spot that is irritated by sitting), Dr. Wang came bursting out of the hematology clinic directly across from me. She thrust the papers in her hand into my lap, and pointed under the "blast" section.
There were 15% blasts in my blood. The thing about this, she explained, is that generally a high amount of blasts in the peripheral (veins and arteries) blood means even more leukemic cells in the marrow. This meant that I almost certainly had a relapse.
After that, things moved quickly and the results of that day's biopsy were almost beside the point. I was set up for an appointment Monday morning in the chemo clinic for the administration of a newly approved drug just for people with relapsed T-cell ALL. Dr. Wang and I agreed we would immediately reactivate my transplant donor search, and recontact the donors who had already been matched to my genetic markers. Lodging arrangements were made, insurance issues were worked out, appointments were confirmed.
Meanwhile, the results of the biopsy came back showing the disease had definitely returned. This was for real!
I have been slow to like Dr. Wang. We got off on the wrong foot when I was inpatient at Roswell in July 2006. But I'm really glad I chose her. She worked the entire afternoon on my case, in a hands-on way that made sure things got done. I am very grateful for her quick action. In addition, she has done a fantastic job of explaining my options and has very patiently and personally advised me of what is going to happen next.
So, what's next: Monday up to Roswell for this chemo. The new stuff will be administered Monday, Wednesday and Friday. I'll stay in the area for a few more days after the treatment for observation and some testing and screening for the bone marrow transplant. If all works out, I'll head back into the hospital for the BMT in late May. I'll get into what all that entails when the time gets closer.
In the meantime, I'm of course not going to work, have gone back on disability. Aside from that, Diane and I are doing great. Believe it or not, it is so much a relief to know what's wrong and have a plan in place to get the problem fixed. Even though that problem means many more days in the hospital, and much more time separated from my life, family and friends, it's the only thing to do.
Thank everyone so much for their support up until this point, and I'll try to post regularly with updates and explanations as they come along.
The last few weeks had been fantastic. I had returned to work, returned to my social life, reassumed the duties and the social connections so important to myself and my family. I'd been greeted by warm, happy people many times a day, people whose warm wishes were met with one response. "I feel great!," I told most everyone. "I feel even better now than I did a year ago.
But I found out on Friday that my leukemia has relapsed.
The worry began Wednesday during a follow up visit to Roswell park for a bone marrow biopsy. Dr. Wang had met with us, and eventually told me that my blood tests revealed that I could not have the biopsy for which we had travelled to Buffalo. My blood counts had not recovered the way they should, and though this was somewhat concerning, at that moment it was more of a clerical problem when it came to the biopsy. The doctors needed to do the biopsy when my counts had reached a certain level, and not before.
We left for home a bit disappointed, but not worried. About 4:30 p.m. Dr. Wang called me on my home phone: There was something weird with the blood tests done earlier that day, and I would need to return to RPCI the next Wednesday, a week before the next scheduled appointment we had made that morning.
I, of course, was concerned. Panic would be a better description. So I got on the phone to Barb Anderson, trusty research nurse, who assured me she would get me into the clinic on Friday for a biopsy.
Barb has this great way of getting things done, and everything was quickly set up for Friday. All that was left was the waiting and the worry. Barb had explained the problem with the blood tests. The tests had revealed 3% lymphoblasts, an immature white blood cell. It is normal for one's body to make one or two of these occasionally, but 3% is at least 3 times what is acceptable for the norm. The lymphoblasts found in blood are often decendents of leukemic stem cells in the marrow. Hence the doctors' concern.
So, Friday morning I got in the Scion about 6 a.m. and headed up to Buffalo. I had decided that no matter what the news, it would be easier on me to keep my head down, get up there, get the news and deal with it. As such, I was worried, but once on the road with Starbucks and the radio, it was just like any other trip.
Dr. Wang performed the Biopsy about 12:00. I have described this procedure before, and Dr. Wang did the often painful operation with patience and expertise, and I had no pain whatsoever.
Beforehand she had explained the plan. If I had a relapse, and the evidence certainly was pointing that way, even from the preliminary tests done Wednesday, I would have to start chemotherapy immediately. Eventually I would need a bone marrow transplant, just as soon as I could get the leukemic cells depressed enough to do the transplant. "You have a lot of treatment ahead of you," she said.
As I was chewing on all of this out in the lobby, calling people and generally nursing my sore backside (the biopsy is done in a spot that is irritated by sitting), Dr. Wang came bursting out of the hematology clinic directly across from me. She thrust the papers in her hand into my lap, and pointed under the "blast" section.
There were 15% blasts in my blood. The thing about this, she explained, is that generally a high amount of blasts in the peripheral (veins and arteries) blood means even more leukemic cells in the marrow. This meant that I almost certainly had a relapse.
After that, things moved quickly and the results of that day's biopsy were almost beside the point. I was set up for an appointment Monday morning in the chemo clinic for the administration of a newly approved drug just for people with relapsed T-cell ALL. Dr. Wang and I agreed we would immediately reactivate my transplant donor search, and recontact the donors who had already been matched to my genetic markers. Lodging arrangements were made, insurance issues were worked out, appointments were confirmed.
Meanwhile, the results of the biopsy came back showing the disease had definitely returned. This was for real!
I have been slow to like Dr. Wang. We got off on the wrong foot when I was inpatient at Roswell in July 2006. But I'm really glad I chose her. She worked the entire afternoon on my case, in a hands-on way that made sure things got done. I am very grateful for her quick action. In addition, she has done a fantastic job of explaining my options and has very patiently and personally advised me of what is going to happen next.
So, what's next: Monday up to Roswell for this chemo. The new stuff will be administered Monday, Wednesday and Friday. I'll stay in the area for a few more days after the treatment for observation and some testing and screening for the bone marrow transplant. If all works out, I'll head back into the hospital for the BMT in late May. I'll get into what all that entails when the time gets closer.
In the meantime, I'm of course not going to work, have gone back on disability. Aside from that, Diane and I are doing great. Believe it or not, it is so much a relief to know what's wrong and have a plan in place to get the problem fixed. Even though that problem means many more days in the hospital, and much more time separated from my life, family and friends, it's the only thing to do.
Thank everyone so much for their support up until this point, and I'll try to post regularly with updates and explanations as they come along.
Thursday, March 22, 2007
SORRY
Hey folks:
Haven't posted in awhile as there hasn't been much news. But the big points: I'm down to just a few weeks left of chemo. I've two more sessions of the high-dose stuff, the first starting March 26 and the second two weeks following. This means by the middle of April or so I'll be ready to head back to work, which is great news. I'm getting really bored, so this will be a blessing.
After the major chemo is over, I'll still be taking oral chemo (Methotrexate and 6-MP) for about two years, get weekly blood checks and head up to Roswell one Wednesday a month for an exam and occasionally a bone marrow biopsy.
As it happens, Dr. Baer -- my attending physician -- Is leaving Roswell Park in the middle of April for a very prestigious position at the University of Maryland's cancer center. I wish her well, though I am sad to hear she's leaving as she has been excellent and a real asset to my recovery. For several reasons I have chosen Dr. Wang to replace her as my attending. I am assured she is up to the task.
Otherwise not too much to tell. Sorry for not posting. It's funny...as I get feeling better it gets harder to post, and I understand many of you have been asking. You can probably expect the posts to be somewhat limited as I go from being my "sick" self to my "healthy" self. I guess that's just the way I do things, but I'll try to put some posts up when I can. It is nice to hear that people are thinking of me.
-Matt
Haven't posted in awhile as there hasn't been much news. But the big points: I'm down to just a few weeks left of chemo. I've two more sessions of the high-dose stuff, the first starting March 26 and the second two weeks following. This means by the middle of April or so I'll be ready to head back to work, which is great news. I'm getting really bored, so this will be a blessing.
After the major chemo is over, I'll still be taking oral chemo (Methotrexate and 6-MP) for about two years, get weekly blood checks and head up to Roswell one Wednesday a month for an exam and occasionally a bone marrow biopsy.
As it happens, Dr. Baer -- my attending physician -- Is leaving Roswell Park in the middle of April for a very prestigious position at the University of Maryland's cancer center. I wish her well, though I am sad to hear she's leaving as she has been excellent and a real asset to my recovery. For several reasons I have chosen Dr. Wang to replace her as my attending. I am assured she is up to the task.
Otherwise not too much to tell. Sorry for not posting. It's funny...as I get feeling better it gets harder to post, and I understand many of you have been asking. You can probably expect the posts to be somewhat limited as I go from being my "sick" self to my "healthy" self. I guess that's just the way I do things, but I'll try to put some posts up when I can. It is nice to hear that people are thinking of me.
-Matt
Friday, February 16, 2007
A good day at Roswell Park. No kidding!
Today everyone did their jobs right at Roswell Park. I can happily report my chemo treatment is a complete success.
To review: I was seated for my appoitment nearly minutes after arriving. My blood counts were that of a healthy man, more or less. The proper orders were and followed, I was given my shot in a reasonabe amount of time, and I will be out of here by 2:00 p.m. Maybe we'll even be home by dark!
For the uninitiated, this efficiency has not always been the case. But I'm not about to go into that now. For the record, I give credit where credit is due. Credit due to the Roswell Park chemo infusion team! Credit delivered!
Barb Anderson, doo-bee extraordinare and crack research nurse, stopped by to see me. We solved the worlds problems. I probably made barb late for her lunch meeting and for that I repeat my apology publicly.
Only way the day could be better is a Franziskaner over at Ulrich's, the german brau-house just down the street. Think I can sneak one in before leaving?
Monday, February 12, 2007
If I had $1,000,000 and no better way to spend it...
Awhile ago Doug Camin Sent me this link
http://www.nelsap.org/ny/innsbruckusa.html
Apparently in the late sixties some wise person or persons decided it would be a good idea to open a ski area just south of Binghamton. Called Innsbruck USA it's about five miles up Pennsylvania Avenue, and you can see it there off of the road to the right.
I remember talking to John Byce about a year ago and his mentioning that there was this really cool ski area, just south of Binghamton, in the seventies, but it closed. He had regaled me with tales of skiing and parties and general after-work schussing...and, oh well it sounded like a heluva good time.
Man, I can't believe the people in Bingoland let this place go. Given unlimited funds and all my other expenses being paid, I'd love get behind an effort to revive this place. Think of it: instead of heading downtown to the sportsbar, head 10 minutes the other way and get on the T-bar. Sweet! This could work. Of course, I'm not sure I want to bet the mortgage on it, hence my reticence to walk up to Partner's Trust and ask for a loan, but you get the idea. Also, I know nothing about running a ski area, other than I like to ski and I know it requires an "area."
Wonder why the county didn't pick up on this where the former owners left off. I mean, they're backing the En-Joie golf course when Endicott couldn't hack it. Why not skiing? Instead, looks like they just took it back for taxes, made it a public park, and left it to the kind of tree-huggers who hike in the summer, not hug trees in the glades in the winter.
Just isn't fair. So brother, can you spare $1,000,000?
Saturday, February 03, 2007
Long time no see
Sorry I haven;t posted on awhile. "Your fans miss you," Diane says, and I guess you do. At least one has given me a gentle push via email. So this is what has happened recently:
1.) My efforts in grief to Roswell about the inefficiencies and delays have prompted the bigwigs to respond. When I was up there earlier this week,the very accomodating nurse department chief visited me on two separate days, first to get my concerns first hand, then to merely check up on me.
Not sure what's going to come of my complaint, but it does appear as though they are taking me seriously. That's satisfying, anyway.
2) I've started my second-to-last round of chemo. This is quite exciting. Monday, Tuesday and Wednesday of this week I had heavy doses of Cytoxan and Ara-C, but I haven't felt too many side effects. Beginning to get mouth sores similar to the last round of chemo, but with somewhat less intensity. Three more days this month I will go up-and-back to Roswell for a shots of Erwinia. One unfortunate bit of Roswell getting its stuff together is I WILL have to stay for two hours after the shot for "observation." I understand this is necessary. It is still a pain in the ass.
3)On the way home from Roswell yesterday I diverted my route to Owego to see another printer's shop. John Henry and his wife Kathy were excellent hosts. They showed me around their shop and we exchanged tips, horror stories and generally talked business. I had a great time. It was lucky, as a very large lake effect snowstorm had blown off to the north, sparing me from driving through the anticipated 2-3" per hour.
That's about it lately. So now, according to Diane, my "peeps" should be satisfied. I'm triying to figure out how easter candy can be properly satisfied.
1.) My efforts in grief to Roswell about the inefficiencies and delays have prompted the bigwigs to respond. When I was up there earlier this week,the very accomodating nurse department chief visited me on two separate days, first to get my concerns first hand, then to merely check up on me.
Not sure what's going to come of my complaint, but it does appear as though they are taking me seriously. That's satisfying, anyway.
2) I've started my second-to-last round of chemo. This is quite exciting. Monday, Tuesday and Wednesday of this week I had heavy doses of Cytoxan and Ara-C, but I haven't felt too many side effects. Beginning to get mouth sores similar to the last round of chemo, but with somewhat less intensity. Three more days this month I will go up-and-back to Roswell for a shots of Erwinia. One unfortunate bit of Roswell getting its stuff together is I WILL have to stay for two hours after the shot for "observation." I understand this is necessary. It is still a pain in the ass.
3)On the way home from Roswell yesterday I diverted my route to Owego to see another printer's shop. John Henry and his wife Kathy were excellent hosts. They showed me around their shop and we exchanged tips, horror stories and generally talked business. I had a great time. It was lucky, as a very large lake effect snowstorm had blown off to the north, sparing me from driving through the anticipated 2-3" per hour.
That's about it lately. So now, according to Diane, my "peeps" should be satisfied. I'm triying to figure out how easter candy can be properly satisfied.
Monday, January 15, 2007
Crappy Weather
This is the wierdest winter on record. Can't understand where this odd, warm, crappy, soggy wet stuff came from, but it's really for the birds. Does anyone really prefer this? You're seeing a view of our favorite spot in the house, the window off of our kitchen looking out on the back yard. Usually we get a nice, white winter scene, but today is a soggy, muddy mess that only depresses, not inspires.
Sure am glad skiing isn't an option for me this year. It's been OK for driving to buffalo, but so little snow has fallen, and so little cold weather has been sustained, I don't think anyone in New York has really had a decent ski day all winter.
Sunday, January 14, 2007
My sweet ride
This is my sweet Scion XB, which about a year ago we covered with an alligator on all sides to celebrate and advertise the new DI press installed at All Ready. Since I've had cancer I've reliquished possession of the car to my Dad, who has been using it for deliveries and other company business, as by all rights it is the company car. But I miss my little scion and I've taken ownership of it again on weekends, and driving it is a hoot.
Kind of a boring weekend here in Vestal. The weather is sincerely BLAH. I think I would prefer 10 degree freezing-ness we are typically greeted with in January, as this not-warm-enough-to-sunbathe-but-just-cold-enough-to-be-rainy-and-sloppy weather is no fun. Though it has made commuting to Roswell Park quite a bit easier, I feel bad for the ski areas and anyone else who enjoys winter. I don't, however, imagine this is global warming. I bet the people out West in Colorado and the other snowbound Rocky Mountain regions have a pretty short temper with the Global Warming types, as they dig out their cars from the 10 or so odd feet of the white stuff that has fallen this year.
No appointments this week, so I've got all the time in the world to hang out in soggy, gray Vestal. Whoohoo! Fun times.
Friday, January 12, 2007
Some really cool people are doing a really cool thing for me tonight. A bunch of my old pipe dream friends are gathered at a club in NYC called Mad River Grill. Headed up by my former colleagues and friends, it sounds like just about every pipe dreamer I ever knew is hanging out for my benefit, at the benefit.
All I can say is thanks everyone. I really wish I could be there.
My cat Star who is sitting next to me wants me to tell you that, really, I'm doing fine and well on the way to being on the mend.
Thanks again folks. It's really wierd to think about all of you there together just to support little old me. I talked to a few of you tonight and it reminded me how lucky I am to have such good friends. It's been too long. This summer, let's get together and drink some beers and toast to our health and the good times we've had. Aw, shucks I'm getting sappy, but I'm tired and I'll bet a few of you won't mind.
--Matt
P.S. Soopa coopa did you show up?
Tuesday, January 09, 2007
I've had it.
I totally blew up at a nurse, a nurse practitioner and a "patient advocate" today.I'd just been held up at Roswell Park for hours past what I had expected. Again. One time too many.
There is a systemic problem with the outpatient infusion clinic at Roswell. They can't keep an appointment. Not your usual problem with not keeping appointments, mind you, but a gross, irresponsible inability to keep appointments. One can plan, on any given day, that if one's appointment is set for any time after about 9 AM, one can expect a minimum of a two-hour wait just to get seated in the clinic. Once seated, expect another hour to see a nurse practitioner. After that, perhaps 45 minutes more to get one's chemo. The wait gets worse as the day goes on.
These delays are hurting patients, the staff and the hospital's reputation:
Patient attiude: It is the talk of the waiting rooms that appointments are so egregiously not kept. Usually one will hear about the hour and a half wait, the two hour wait, the three hour wait, etc. No one bothers to apologize for the problem, either. The wait is so bad and so long that the hospital has put a band-aid on the problem. They use pagers, the kind of light-and-vibrate things they give you at Outback Steakhouse or Olive Garden when there is a long wait. In the case of Roswell, the reservations have been made weeks or months in advance. Is this situation really right?
Patient Care The long delay means, even if a patient lives in Buffalo, he is tired and annoyed by the time he finally gets his chemo. If the patient is from afar, it may be the wait is on top of a long drive in starting with the wee hours. This frustration is taken out on the nurses, who are just doing their best within the system. Still, mistakes are inevitable. Two weeks in a row, I had to demand a chemo drug that was odmitted. For several weeks, an order was written requiring observation after this Erwinia. Today, for some reason, someone noticed and the order was enforced. Not a problem if prompt attention had been paid. But it was the end of a long series of disappointments, more waiting, and more disappointments. My appointment was at 10:00. I was seated at 10:45, which is actually pretty early. I didn't get my chemo, a stupid, simple shot of Erwinia( which, granted is not a routine drug, but I AM the only person in the hospital who gets it, so it shouldn't have been hard to find.) until 12:30. As the patient advocate (basically a customer liason) said to me, "You just seem like you've had it." And she was about right. What would have happened who didn't know everything he needed to get that day, before he showed up?
Follow the money: Hospitals don't seem to like to talk about money. But I wonder if Roswell Park knows how much money they are losing with their inefficiency, especially considering the chemo clinic.
It seems to me a basic flaw exists in the attention paid to certain periods of time. More effort is spent focusing on the time chemotherapy takes. But the time chemotherapy takes is not up for change. There's only so much stuff one can get into his body in an hour. Some drugs require observation, for a specific period of time. It is not appropriate to fight the time medical procedures take, and I think medical procedures are not the reason things are delayed. I think the delays boil down to 1) a lack of a manager or expediter to move things along when they need to be moved along, and b) a belief that once a patient is seated, the pressure is off.
My contention is that once a patient is seated, the pressure is on! It oughta be showtime. Fifteen minutes shouldn't go by between the time a person is seated and the time chemo starts flowing through their viens. A half hour would be great. But what I don't think they realize is the time people wait in chairs, inside the chemo clinic, is the time the WHOLE clinic is delayed.
One thing the patient advocate, who I spoke with at length while I was cooling my heels in the clinic for two hours today, requested I make some sugesstions. Here they are:
A. Treat chair time like gold. This time in the chair is the ONLY hope the clinic has of reaching a more on-time treatment rate, or increasing its throughput. We can't change chemo time, so everyone's got to figure a way to hustle. Patients should spend as little time in the chair when not getting chemo as possible.
2 Find alternatives to the chair. In other clinics, patients are returned to the lobby after an evaluation until a dr./ NP/ exam room is ready. Appointments are rarely late in other clinics, just chemo. So send us out of the chemo if things aren't ready! If observation or post counts are needed, don't keep us in the chair if another patient is waiting. There is very comfortable Stickley furniture in the lobby, and I am sure we could wait the proper amount of time then. The hours people would normally wait in the clinc chair would be spent in the less-scarce lobby seating, freeing up more space for more patients and enabling everyone to do the job accurately and efficiently.
3.Invest in any technology that will decrease labor and increase accuracy and speed of care. Wilson Hospital in Johnson City, a small generalist hospital, has these neat scanner guns. The nurse scans the order, scans the drug, scans the patients' wristband. Any drug, chemo or otherwise, is a 1-minute affair to confirm.
In the chemo clinic, one's nurse gets all the chemo, sets it down. Then the nurse has to go find another nurse. An odd ritual ensues, requiring basic ID information from me and having both nurses sign off on the orders and chemo confirming both are correct. So now we have two nurses, two clocks ticking, two sets of labor hours charged for a procedure that allready takes two or three times what it might take if a modern scanner system were in place. I don't know, but this seems like it could save a lot of time over 50 or 100 patients in a day.
That is about all, but realize why I am frustrated mostly is I entered this whole thing with only the best things to say about Roswell. And frankly, my care has turned out just great. But after so many days like today, there is just so much you can take. I had my fill today, and hence the problem that has probably earned me quite the reputation.
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PS: Becky: I'd like to email you back but the silly blogger program doesn't show your email. GRR.
Dustin: I miss Dustinland. And thanks for spreading the word about my blog.
Monday, January 01, 2007
Always ask for the good drugs
I am feeling much better in the last two days thanks to new drugs prescribed and acquired over the weekend.
I had been feeling super-crappy and hardly sleeping all week because of the stupid pain meds and flared up tongue sores and swollen tongue that had beset me recently after starting the Erwinia. The Oxycodon I was taking made me really irritable and edgy, and also very hyper. On Friday I ased Kelly Reese, a nurse practitioner, to prescribe something else for the pain. Remember: I can't take normal analgesics, as acetominophen and ibuprofen will hide a fever. Kelly prescribed Dialudid, a narcotic pain med with Hyrdromorphone as the active incredient. Meanwhile, the large shipment of gelclair was waiting for me at the clinic, and I started using it immediately.
The Dialudid prescription was a bit difficult to fill. I get the impression it's not prescribed all that often in Binghamton. Not that this should surprise anyone that I would need something a little bit out fo the ordinary, Friday night it wasn't available at CVS, and I just missed the Target Pharmacy closing at 9:00. Saturday morning I went back to target, and they didn't carry it, AND WOULDN"T BE ABLE TO GET IT UNTIL TUESDAY. I --calmly as possible -- explained just how badly I needed the drug. The nice pharmacist behind the counter offered to call Wegmans Pharmacy. Sure enough, wegmans had 90 2 MG pills of Dialudid!
I made A beeline for Wegmans and they filled my prescription. Within 1/2 hour of taking the first dose I felt like a normal person again. The pain was totally gone and I had a normal attitude and no fuzziness or dowsiness, and certainly I wasn't hyper. Meanwhile I continued to use the Gelclair after every meal, and its effects are helping to heal my poor tongue. It's no longer swollen, the sores are less inflamed and I'm needing the pain meds a lot less often. At first I was taking 1 pill every four hours, but today i'm down to one pill at waking, and didn'tm take another until about 6 PM. Yay for effective drugs!
Appointment for tomorrow at Roswell Park to get more Erwinia, and I'll probably need some platelets. We plan to show up early so we have half a chance of getting home tuesday night at a reasonable hour.
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