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.
Saturday, June 23, 2007
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
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