Well, it's official. A week from today Di and I will be heading up to Buffalo and I'll be moving into A VERY nice apartment at Kevin Guest House in preparation for my month-long course of chemo. Di and I visited the apartment after my clinic appointment monday and the apartment is well stocked.
So, check it out: this apartment has a full kitchen: stove, sink, DISHWASHER, fridge, microwave, plates, pots and pans, toaster oven and other assorted fixings. Living room has flat screen TV, computer, internet access and couch, loveseat and chair. The TWO bedrooms and three beds should house whoever needs to come over, and downstairs the brand new washer and drier is free....you just provide the soap. HOT.
I am looking forward to getting on with treatment. It has been a bit too long hanging out here at home. I'm sure as soon as I get up there I'll be a little homesick, but that's cause the grass is always greener. Apparently according to Dr. Baer I am doing very well and am very healthy. She did have me stop the Flecanide (heart condition drug) and the cardiologist finally called me back today and agreed. It has been giving me these itchy rashes on my legs, and the doctors will start me on some different medications when I return to buffalo.
Kind of a rainy wet crappy day today. What is up with this weather, anyway?
Hope you all are hanging in there.
-Matt
Tuesday, August 29, 2006
Thursday, August 24, 2006
Off the neupogen
Well, it looks like I won't be giving myself a shot for awhile. Had a blood test today at Dr. Khan's office, and my blood counts now resonably approximate a normal person's!
White blood cell counts at 6.54, PLatelets at 126 and everything else looking rosy. That's the good news. The bad news is this won't make my treatment re start any sooner. Talked to Dr. Baer's office today and we're still on track for a Sept. 6 start for my chemo. Lovely!
Other than that life has been pretty boring. I've been hanging out at home. Looks like things are going well at work without me, which is good. I'm gaining great knowledge of Daytime TV in he meantime!
White blood cell counts at 6.54, PLatelets at 126 and everything else looking rosy. That's the good news. The bad news is this won't make my treatment re start any sooner. Talked to Dr. Baer's office today and we're still on track for a Sept. 6 start for my chemo. Lovely!
Other than that life has been pretty boring. I've been hanging out at home. Looks like things are going well at work without me, which is good. I'm gaining great knowledge of Daytime TV in he meantime!
Monday, August 21, 2006
Family proves to be good medicine
Saturday night Mom, Dad, Kathy, Mike, Pam, Megan and Uncle Dean came over bringing dinner and a whole lot of fun to our home on Earl Road. There was Chicken wing dip, chicken wings from the mosquito lounge, kathy's baked ziti and other goodies of all kinds. Fun! Ted wasn't feeling so good and Nathan was out of sorts, too, so they couldn't make it. In the absence of her dad and brother, I think megan enjoyed being the center of attention, though. She was hamming it up! Meg picked out and wrote out a card just for her uncle matt, then when she saw the cards with matt's mug on the front that his dad made for him, she wanted matt's autograph. Cute!
Anyway, all the family around must have made some kind of difference. Matt and Di trekked up to buffalo again Sunday night, and monday there was some big progress in matt's disease. My blood counts have risen quite a bit, even since visiting Dr.Kahn on thursday. White counts up from .75 to 3.06!!! Big jump. The family and the growth factor shots must have combined for some big progress.
Wierdly though, the big progress hasn't meant fast progress in treating my disease. Dr. Baer wants me to come back next monday for a bone marrow biopsy and general checkup. If counts are above 5 at that point, I will start chemo a week later. I asked Dr. Baer if maybe we could start treatment sooner, and it didn't seem likely. She said, "we'll see," but I'm learning what that means: Probably not!
Just seems like I'm spinning my wheels here waiting at home. Want to get headed back on the road to recovery (please forgive the pun!).
In the meantime, we discovered that I have something else wierd about my body: When I came into the clinic they took my vitals, and my pulse was really fast: about 150 beats per minute. It was a little fast the last time I came to the clinic, but on doing an electrocardiogram, Dr. Baer said I had some wierd kind of heart anomaly.
On meeting the cardiologist after an echocardiogram a few hours later, we found out
what exactly I have:Wolff Parkinson White Syndrome. Apparently, I have an extra 'wire" connecting the top of my heart to the bottom of my heart. Apparently this nerve (wire) is like having an extra open circuit, and in the right (unusual) conditions it will repeat the impulse that makes my heart beat, thus making it do doubletime.
The cardiologist basically said I probably would never know about this were it not for my cancer. Great. Then he gave three options for treatment: Do nothing--risky; Minor surgery to "zap" the extra nerve, a little less risky; or take medication to minimize chance of a problem occurring, the least possible risk with the least chance of complications due to treatment for leukemia. He prescribed a pill for me to take twice daily, and I was glad as at least we know what the problem is now.
Anyway, thanks for reading. Your reactions and emails are great. Remember: If you post on the blog and DONT leave your email address, I probably won't be able to respond to you. So if you are expecting/hoping a response either post or send me your email address. Thanks!
Anyway, all the family around must have made some kind of difference. Matt and Di trekked up to buffalo again Sunday night, and monday there was some big progress in matt's disease. My blood counts have risen quite a bit, even since visiting Dr.Kahn on thursday. White counts up from .75 to 3.06!!! Big jump. The family and the growth factor shots must have combined for some big progress.
Wierdly though, the big progress hasn't meant fast progress in treating my disease. Dr. Baer wants me to come back next monday for a bone marrow biopsy and general checkup. If counts are above 5 at that point, I will start chemo a week later. I asked Dr. Baer if maybe we could start treatment sooner, and it didn't seem likely. She said, "we'll see," but I'm learning what that means: Probably not!
Just seems like I'm spinning my wheels here waiting at home. Want to get headed back on the road to recovery (please forgive the pun!).
In the meantime, we discovered that I have something else wierd about my body: When I came into the clinic they took my vitals, and my pulse was really fast: about 150 beats per minute. It was a little fast the last time I came to the clinic, but on doing an electrocardiogram, Dr. Baer said I had some wierd kind of heart anomaly.
On meeting the cardiologist after an echocardiogram a few hours later, we found out
what exactly I have:Wolff Parkinson White Syndrome. Apparently, I have an extra 'wire" connecting the top of my heart to the bottom of my heart. Apparently this nerve (wire) is like having an extra open circuit, and in the right (unusual) conditions it will repeat the impulse that makes my heart beat, thus making it do doubletime.
The cardiologist basically said I probably would never know about this were it not for my cancer. Great. Then he gave three options for treatment: Do nothing--risky; Minor surgery to "zap" the extra nerve, a little less risky; or take medication to minimize chance of a problem occurring, the least possible risk with the least chance of complications due to treatment for leukemia. He prescribed a pill for me to take twice daily, and I was glad as at least we know what the problem is now.
Anyway, thanks for reading. Your reactions and emails are great. Remember: If you post on the blog and DONT leave your email address, I probably won't be able to respond to you. So if you are expecting/hoping a response either post or send me your email address. Thanks!
Friday, August 18, 2006
Decisions, decisions
Well, the verdict is in. Dr. Baer called wednesday with the results of Monday's bone marrow biopsy. Though the first round of chemo did kill most of the leukemia in my bones, there is a "significant but small" amount of leukemic cells remaining. What this means, Dr. Baer said, is that my cancer is responding to treatment, just not enough. Thus I need a bone marrow transplant. I will go through 1 more round of regular chemotherapy, possibly the one that was scheduled for me next, as the bone marrow team narrows down a match from the 42 possible donors on the bone marrow registry. Dr. Baer isn't sure if I will get this inpatient in the hospital, or outpatient it the clinic. I was supposed to start my next round of chemo on monday, but it looks like that will be delayed at least a week as my counts are kind of low.
After that second round of chemo, they will hopefully ave found a donor for me, and I will be admitted to the hospital and they will start the transplant process with the superstrong BMT chemo. I will emerge 4-6 weeks later with new bone marrow and will stay in buffalo for at least 100 days, and I will fully recover within a year-- or so we hope.
In the meantime I wait. I am feeling OK, have been a little nauseous over the past few days. Got blood yesterday at wilson hospital. A whole lot of it--two bags of red blood cells and a bag of platelets. Ran into meagan mitrus which was kind of nice, and spent most of the day getting all that blood. They ran it really slow compared to how they do things at roswell. Wierd. Also saw Dr. Kahn, who prescribed the blood. He seemed excited to see me, and It was good to see him, but I can totally understand how the doctors at Roswell like to handle everything themselves. A lot can get lost in translation, and there was quite a bit of figuring and re-understanding of the case going on between the instructions from roswell and the prescriptions Dr. Kahn gave out at wilson. Interesting to see going on.
Otherwise, all is well. Looking forward to saturday night, as Di's family and my mom and dad will be coming over for a big dinner. Should be fun!
Hope to talk to you all soon.
Matt
After that second round of chemo, they will hopefully ave found a donor for me, and I will be admitted to the hospital and they will start the transplant process with the superstrong BMT chemo. I will emerge 4-6 weeks later with new bone marrow and will stay in buffalo for at least 100 days, and I will fully recover within a year-- or so we hope.
In the meantime I wait. I am feeling OK, have been a little nauseous over the past few days. Got blood yesterday at wilson hospital. A whole lot of it--two bags of red blood cells and a bag of platelets. Ran into meagan mitrus which was kind of nice, and spent most of the day getting all that blood. They ran it really slow compared to how they do things at roswell. Wierd. Also saw Dr. Kahn, who prescribed the blood. He seemed excited to see me, and It was good to see him, but I can totally understand how the doctors at Roswell like to handle everything themselves. A lot can get lost in translation, and there was quite a bit of figuring and re-understanding of the case going on between the instructions from roswell and the prescriptions Dr. Kahn gave out at wilson. Interesting to see going on.
Otherwise, all is well. Looking forward to saturday night, as Di's family and my mom and dad will be coming over for a big dinner. Should be fun!
Hope to talk to you all soon.
Matt
Tuesday, August 15, 2006
"The drugs are (not so) quick..."
Well, I had my first clinic appointment with Dr. Baer on Monday, 9:30 in the AM in Buffalo. So early, diane and I drove up to ithaca the day before, stopping to see Mike and Kathy Malloy as well as the entire Travis Family, which was great to do! I think my niece and nephew Megan and Nathan were a little bit wierded out by seeing me, which I totally understand. If I was 5 and remembered last seeing my uncle 20 pounds heavier with a full curly head of hair, I would be wierded out when this masked skinny bald guy showed up to say hi!
Anyhow, Di and I woke up in Buffalo after a very comfortable evening in the Dream Room at Kevin Guest Guest house. The Dream Room is a plush, newly furnished room with a fantastic pillow-topped queen-sized bed, new furnishings, a well matched decor and DREAM inscribed in brass letters above the bed. Slept so well it was tough to get up in the morning! We walked over to the hospital, through the beautful gardens and walked up the information desk, where we were given our first batch of misinformation. The nervous-looking information guy said we should get right in line across the room, get our blood taken and not to wait a minute if we were smart. We did the usual thing--ignored him--and headed upstairs to the cafeteria, where I had a fantastic cheese omelet (I'd bet there were 5 eggs in it) and crispy bacon and toast, plus some OJ. Finally headed downstairs and got in line for the clinic, where we were sent over to the Hematology/oncology section. They then ordered blood tests for me, and sent me over for about 12 blood tests.
This is where the wierdness started. I sat town with the phlebotomist--they let me right in--and I got my line out for her to take my blood from one of the lumens. Heck, I spend a lot of time and materials maintaining, cleaning, re-dressing and flushing this thing, and figured it was now useful again.
As it turns out, the nice lady said, "I can't use your line to take blood. We (the phlebotomists) can only take stuff out. To flush your line out, we'd have to put something in."
Now this, to me, is crap. It, I'm sure, would be way less risk of infection and stress on my body and another needle prick to take blood out of my line. I mean, that must be half the reason they gave it to me in the first place. In the meantime though I figured it wasn't worth the battle, so she pricked me up and took the quart of blood all those tests required. Then I headed back over to hematology/oncology and they shooed me into an exam room posthaste. Not a lot of waiting, at least until I got into and saw staff!
After the usual vitals, wieght etc. I was interviewed by the office nurse and nurse practitioner, who I had seen before on rounds and who had ordered my mouth care script the other day. I told them of my somewhat anemic symptoms I had been having for a day or so, and reported about my dedicaed line care, headaches, temp taking and all that stuff. As it turns out, my counts were all quite low. Platelets had dropped to about 11, my red cells were down and even my white cells were down to 55.
As it turns out, I can get my blood taken through the central line, so long as I request that at the clinic when I check in. Heck, If I can be a pain in the butt to someone, I guess I'll just have to be. No more silly pinpricks if they're not necessary.
Later, I was told I had to get platelets and red cells, the platelets coming before my bone marrow biopsy.
So, for the next several hours I lay flat in an exam room fading in and out of consciousness getting benadryl and hydrocortizone and then platelets. After getting all this I was feeling pretty darned good, and I think I surprised the nurse when she prompted me to walk down the hall to the biopsy room. As the phenobarb lolipop was dissolving in my mouth, I met the most interesting pair of nurse's aids. They were laughing and joking and carrying on in very much the same way the staff at theo's ribs do when you go there and order sweet potato pie. We talked about popcorn and friends and by the time my barbituate lolipop had disolved, they had my shorts down and my shirt up and I was ready for the biopsy. Dr Baer did the honors and it (honestly) only hurt for a second. Apparently I am a fantastic patient, but I have strong bones. It is quite an odd sensation to hear a highly-educated doctor grunt as she struggles to remove the very large biopsy needle from your backside. She got it out, and they bandaged me up and told me to change the dressing the next day.
The long and the short of my visit in the end was that I need to call Dr. Baer's office on Wednesday for the results of the biopsy, that my blood counts went down quite a bit and I should have them checked again while I am here -- I have an appointment with Dr. Khan on thursday and he has been prepared for the likelihood of giving me blood transfusions of various types -- and my chemo, which was scheduled to start again next monday, has been pushed back by a weeks time. We'll see what Dr. Baer has in mind when I visit her next Monday.
On the way home from the clinic we stopped at Anchor Bar. Cool looking place inside. Di let me order wings than ousted me to the car while they were being prepared. No wings are worth getting an infection over! She was right. I ate the famed wings in the car on they way home. They were ok, but nothing to write home about or even drive to buffalo for. I'd eat the wings at the mosquito lounge anytime before doing that!
Today was quite a bit more relaxing. Headed to syracuse in the AM for another visit to the fertility clinic, then came back here and mostly rested in the afternoon. Ordered a new shipment of the nupogen shots per my doctor's request. Got the tracking number, and I see they're on thier way as I write. Diane made one of my favorite dinners tonight: Curried chicken flourentine. YUM! So, otherwise that's About it.
Hope all is good in your neck of the woods. Long post tonight, but I've been off for awhile. Thanks for writing and reading!
Anyhow, Di and I woke up in Buffalo after a very comfortable evening in the Dream Room at Kevin Guest Guest house. The Dream Room is a plush, newly furnished room with a fantastic pillow-topped queen-sized bed, new furnishings, a well matched decor and DREAM inscribed in brass letters above the bed. Slept so well it was tough to get up in the morning! We walked over to the hospital, through the beautful gardens and walked up the information desk, where we were given our first batch of misinformation. The nervous-looking information guy said we should get right in line across the room, get our blood taken and not to wait a minute if we were smart. We did the usual thing--ignored him--and headed upstairs to the cafeteria, where I had a fantastic cheese omelet (I'd bet there were 5 eggs in it) and crispy bacon and toast, plus some OJ. Finally headed downstairs and got in line for the clinic, where we were sent over to the Hematology/oncology section. They then ordered blood tests for me, and sent me over for about 12 blood tests.
This is where the wierdness started. I sat town with the phlebotomist--they let me right in--and I got my line out for her to take my blood from one of the lumens. Heck, I spend a lot of time and materials maintaining, cleaning, re-dressing and flushing this thing, and figured it was now useful again.
As it turns out, the nice lady said, "I can't use your line to take blood. We (the phlebotomists) can only take stuff out. To flush your line out, we'd have to put something in."
Now this, to me, is crap. It, I'm sure, would be way less risk of infection and stress on my body and another needle prick to take blood out of my line. I mean, that must be half the reason they gave it to me in the first place. In the meantime though I figured it wasn't worth the battle, so she pricked me up and took the quart of blood all those tests required. Then I headed back over to hematology/oncology and they shooed me into an exam room posthaste. Not a lot of waiting, at least until I got into and saw staff!
After the usual vitals, wieght etc. I was interviewed by the office nurse and nurse practitioner, who I had seen before on rounds and who had ordered my mouth care script the other day. I told them of my somewhat anemic symptoms I had been having for a day or so, and reported about my dedicaed line care, headaches, temp taking and all that stuff. As it turns out, my counts were all quite low. Platelets had dropped to about 11, my red cells were down and even my white cells were down to 55.
As it turns out, I can get my blood taken through the central line, so long as I request that at the clinic when I check in. Heck, If I can be a pain in the butt to someone, I guess I'll just have to be. No more silly pinpricks if they're not necessary.
Later, I was told I had to get platelets and red cells, the platelets coming before my bone marrow biopsy.
So, for the next several hours I lay flat in an exam room fading in and out of consciousness getting benadryl and hydrocortizone and then platelets. After getting all this I was feeling pretty darned good, and I think I surprised the nurse when she prompted me to walk down the hall to the biopsy room. As the phenobarb lolipop was dissolving in my mouth, I met the most interesting pair of nurse's aids. They were laughing and joking and carrying on in very much the same way the staff at theo's ribs do when you go there and order sweet potato pie. We talked about popcorn and friends and by the time my barbituate lolipop had disolved, they had my shorts down and my shirt up and I was ready for the biopsy. Dr Baer did the honors and it (honestly) only hurt for a second. Apparently I am a fantastic patient, but I have strong bones. It is quite an odd sensation to hear a highly-educated doctor grunt as she struggles to remove the very large biopsy needle from your backside. She got it out, and they bandaged me up and told me to change the dressing the next day.
The long and the short of my visit in the end was that I need to call Dr. Baer's office on Wednesday for the results of the biopsy, that my blood counts went down quite a bit and I should have them checked again while I am here -- I have an appointment with Dr. Khan on thursday and he has been prepared for the likelihood of giving me blood transfusions of various types -- and my chemo, which was scheduled to start again next monday, has been pushed back by a weeks time. We'll see what Dr. Baer has in mind when I visit her next Monday.
On the way home from the clinic we stopped at Anchor Bar. Cool looking place inside. Di let me order wings than ousted me to the car while they were being prepared. No wings are worth getting an infection over! She was right. I ate the famed wings in the car on they way home. They were ok, but nothing to write home about or even drive to buffalo for. I'd eat the wings at the mosquito lounge anytime before doing that!
Today was quite a bit more relaxing. Headed to syracuse in the AM for another visit to the fertility clinic, then came back here and mostly rested in the afternoon. Ordered a new shipment of the nupogen shots per my doctor's request. Got the tracking number, and I see they're on thier way as I write. Diane made one of my favorite dinners tonight: Curried chicken flourentine. YUM! So, otherwise that's About it.
Hope all is good in your neck of the woods. Long post tonight, but I've been off for awhile. Thanks for writing and reading!
Friday, August 11, 2006
Hi! My Name is Matt and I am a Starbucks addict
I received certified proof today that I am a starbucks addict in recovery.
My Dad has been driving the Alligator Scion since I started treatment. Every day, he stops at starbucks on the parkway.
Now, if you frequent starbucks, you know the baristas remember you. They especially remember you if you drive a scion with an alligator on each side. So, i had gotten to know everyone there pretty well over the last few months, and they saw me coming.
When dad started to drive the alligator, apparently they asked him where I went. He told them about my ALL and they have been following the blog here.
Today, my dad dropped off the sign I am showing you here. How cool is it that they put that together! And lo, how clear it is that I am a certified starbucks addict?!?!?
Diane and I drove to Syracuse today to visit the CNY Fertility Clinic. There is competing information out there about whether chemo for ALL permanently impedes sperm production. Some say function returns after chemo is complete, others say I will be sterile forever. As Diane and I are certain we want to have our own biological children, we are not leaving it to chance that my "boys" will swim again after I finish treatment. Hence we made our first of at least two trips today. I was impressed by the operation they have up in Syracuse. The waiting room was furnished with more plush furniture than Jon Miselnicky's living room. There was a fireplace, coffee and tea maker, and more people than I've ever seen in any doctor's office. While I was inside for about 20 minutes, Diane said she saw more than 20 people come in and go out. All through the parking lot were nearly new cars, mostly of the exotic imported type. All I kept thinking as I left the place is, gee, did I ever get in the wrong business! No, not really, but judging from the volume of people I bet the doctor who owns the place just about prints money.
On they way back from syracuse my tongue started to get really sore. It has been deteriorating the past couple of days; the doctors didn't write a script for the mouth care products I had been using in the hospital. There was this special mouthwash and a lozenge that helped control and kill any bad bacteria in my mouth. I've been using listerine now that I'm home, but it seemed to really irritate the mouth and not help at all. So I called Dr. Baer's clinic. Thankfully, the nurse in charge quickly got back to me, and they called in a script for the Peridex mouthwash I had been getting in the hospital, and the lozenges that generally calm and sooth my mouth. Di an I went to get them (and ran into kim leonard...Hi Kim!) and as soon as I got home I took the medicine, and Immediately my mouth felt better. Phew. It was really starting to get uncomfortable, and I'm glad I have what I need now.
Well, I'm going to get going now. We're gonna have spaghetti and meatsauce tonight, and I'm getting really hungry, so I'm going to bug Di and see if we can get some yummy eats on the table. OHO! ne more thing. If and when you comment on the blog, can you please leave your email address for me. The comments are forwarded to my gmail account, but if you don't leave your email address, and I don't already have it, I am unable to respond to your posts. Thanks!
Wednesday, August 09, 2006
There's no place like home
Today is a really great day. Instead of updating my blog from a hospital bed in Buffalo, I am writing from my living room sofa in Vestal. I've been discharged from Roswell; I am home at Earl Road!
I got the first inkling I might be going home yesterday, when I received the results of my routine 5 a.m. bloodwork at about breakfast time. White cells were a whopping .92! Now, in the scheme of things, a .92 count is pretty pitiful (healthy counts are 3 or higher at least) but when 3 days before your white count was .19, the near inverse is worthy of dancing a jig. And no, I didn't dance a jig, but I sure felt like it.
Dr. Wang came to see me, and she was impressed. Not too impressed to cancel the lumbar puncture I had scheduled for that day --she was still worried about my blurry vision-- but impressed enough to tell me that if I still felt well in the morning, I could go home.
The lumbar puncture, this time done in radiology with real live medical equipment and a real doctor, went seamlessly and quickly (and came out negative for lukemia), and I went to bed last night confident I would go home. After meeting with half a dozen people--pharmacist, dr. social worker, master plumber (no, not really a master plumber) I was given my discharge papers and Di drove me home. She had gone into work for a few hours, then zipped up to buffalo to pick me up.
I am not home for good however. Monday I head back to Buffalo for the day, as I have a clinic appointment with Dr. Baer. Bone marrow biopsy. Ugh. Good news is we'll come back that night and I'll be able to stay in bingoland till the 19th. Then I go back to Buffalo and move into a new "off campus" residence. I'll start my second round of chemo on an outpatient basis bright and early the next day.
A note about visitors while I'm home. I would really like to see everyone, but I have a problem. Though my counts are looking good for me, compared to every other healthty person in Broome County I have a sickly and weak immune system which would hospitalize any of the rest of you. So, I really have to limit visitors to family, and even they can't come if they've been exposed to a cold or disease within the last few weeks. It's not something I like, but it's really a matter of life and death. Any infection I get will delay the progress of my chemotherapy, and that's just not worth the risk.
I'd like to thank everyone who visited, sent cards, letters, gifts and emails while I was at Roswell. You have no idea how great this made me feel, and helped to pass the time. All the nurses and doctors really thought I was something special because of all the evidence of friends and family hanging on the wall. And I felt like something special, too. I am grateful and humbled by the response, and I consider all of you true friends for your support during this difficult time. It really means more than you can possibly imagine!
Thanks again for everything.
Matt Kensey
I got the first inkling I might be going home yesterday, when I received the results of my routine 5 a.m. bloodwork at about breakfast time. White cells were a whopping .92! Now, in the scheme of things, a .92 count is pretty pitiful (healthy counts are 3 or higher at least) but when 3 days before your white count was .19, the near inverse is worthy of dancing a jig. And no, I didn't dance a jig, but I sure felt like it.
Dr. Wang came to see me, and she was impressed. Not too impressed to cancel the lumbar puncture I had scheduled for that day --she was still worried about my blurry vision-- but impressed enough to tell me that if I still felt well in the morning, I could go home.
The lumbar puncture, this time done in radiology with real live medical equipment and a real doctor, went seamlessly and quickly (and came out negative for lukemia), and I went to bed last night confident I would go home. After meeting with half a dozen people--pharmacist, dr. social worker, master plumber (no, not really a master plumber) I was given my discharge papers and Di drove me home. She had gone into work for a few hours, then zipped up to buffalo to pick me up.
I am not home for good however. Monday I head back to Buffalo for the day, as I have a clinic appointment with Dr. Baer. Bone marrow biopsy. Ugh. Good news is we'll come back that night and I'll be able to stay in bingoland till the 19th. Then I go back to Buffalo and move into a new "off campus" residence. I'll start my second round of chemo on an outpatient basis bright and early the next day.
A note about visitors while I'm home. I would really like to see everyone, but I have a problem. Though my counts are looking good for me, compared to every other healthty person in Broome County I have a sickly and weak immune system which would hospitalize any of the rest of you. So, I really have to limit visitors to family, and even they can't come if they've been exposed to a cold or disease within the last few weeks. It's not something I like, but it's really a matter of life and death. Any infection I get will delay the progress of my chemotherapy, and that's just not worth the risk.
I'd like to thank everyone who visited, sent cards, letters, gifts and emails while I was at Roswell. You have no idea how great this made me feel, and helped to pass the time. All the nurses and doctors really thought I was something special because of all the evidence of friends and family hanging on the wall. And I felt like something special, too. I am grateful and humbled by the response, and I consider all of you true friends for your support during this difficult time. It really means more than you can possibly imagine!
Thanks again for everything.
Matt Kensey
Monday, August 07, 2006
Not such a triple threat
When I woke up this morning, groggy from the pre-platelet drugs my nurse Kiera had given me about 6 a.m., I was nervous. As it turns out, I should have been happy. My usual 5 a.m. blood test turned out really well. White cell counts jumped from .19 to .58 overnight. Whoohoo! Now, don't get me wrong, I am still quite sick and they aren't letting me out of the hospital just yet, but such a immediate and big jump has to be a good thing.
Dr. Wexlar agreed when he saw me about noon. I was hanging out with Di and had just finished the MRI Dr. W prescribed to investigate the blurry vision I am still having. He came in the room and said "You must have been scared, because your blood counts are finally getting in shape," he said (or something to that effect, as I can't ever remember conversations verbatim. I was doing so well, he said, that he would skip the Bone Marrow Biopsy he had planned for today. I said "Cool!" really loud, and all the residents (there must have been at least 10) were smiling and giggling in the hallway. Too funny!
Bad news is I will still be getting a lumbar puncture tomorrow, but it will be done down in radiology and won't (hopefully) be such a big deal as the last fiasco that left me on my back for a week. At least that stupid fellow who did it before won't be doing it; Di always gives him the evil eye, but we haven't seen his face lately. I'm kinda hoping he got fired!
It's kind of boring here today, so I am thinking about what I would do if I weren't here. Maybe you want to do one of these things because I can't! The worst thing about being in the hospital is the lack of control--it's kind of like being in jail. So, I guess I'm just thinking about all the things I would do if I had the chance.
Top 10 things Matt would do if he weren't in the hospital
10. Eat some anchor bar chicken wings!
9. Get in the alligator car and stop at starbucks.
8. Drive with the windows down and the music playing loud.
7. Stop in at a movie theatre and buy a bag of popcorn
6. Hit a bucket of golf balls.
5. Mow the lawn--I'll bet it needs it about now.
4. Up and decide it's time to cut out of work early
3. Play with the star-nugget, because she probably misses me.
2. Open up and expensive bottle of wine, just because I want a glass
1. Have a picnic with Di at the back yard of our house, enjoying the view of our huge green back yard.
Hope everyone is doing well. Thanks for the letters!
Dr. Wexlar agreed when he saw me about noon. I was hanging out with Di and had just finished the MRI Dr. W prescribed to investigate the blurry vision I am still having. He came in the room and said "You must have been scared, because your blood counts are finally getting in shape," he said (or something to that effect, as I can't ever remember conversations verbatim. I was doing so well, he said, that he would skip the Bone Marrow Biopsy he had planned for today. I said "Cool!" really loud, and all the residents (there must have been at least 10) were smiling and giggling in the hallway. Too funny!
Bad news is I will still be getting a lumbar puncture tomorrow, but it will be done down in radiology and won't (hopefully) be such a big deal as the last fiasco that left me on my back for a week. At least that stupid fellow who did it before won't be doing it; Di always gives him the evil eye, but we haven't seen his face lately. I'm kinda hoping he got fired!
It's kind of boring here today, so I am thinking about what I would do if I weren't here. Maybe you want to do one of these things because I can't! The worst thing about being in the hospital is the lack of control--it's kind of like being in jail. So, I guess I'm just thinking about all the things I would do if I had the chance.
Top 10 things Matt would do if he weren't in the hospital
10. Eat some anchor bar chicken wings!
9. Get in the alligator car and stop at starbucks.
8. Drive with the windows down and the music playing loud.
7. Stop in at a movie theatre and buy a bag of popcorn
6. Hit a bucket of golf balls.
5. Mow the lawn--I'll bet it needs it about now.
4. Up and decide it's time to cut out of work early
3. Play with the star-nugget, because she probably misses me.
2. Open up and expensive bottle of wine, just because I want a glass
1. Have a picnic with Di at the back yard of our house, enjoying the view of our huge green back yard.
Hope everyone is doing well. Thanks for the letters!
Sunday, August 06, 2006
Grow, white cells, grow.
Woke up this morning and asked for my lab results from the blood they took at 5 a.m. White cells dropped to .19, platelets held strong at .52, so at least I didn't have to have more platelets today. It's odd to me that my white cells would dip again, but what can you do. I've been feeling really glad the doctors didn't let me out when they had originally thought they were going to, as I'm sure if I were home all this bad cell count stuff would've meant a very annoying and immediate four-hour drive back to buffalo. Not very nice to think about.
Met with Dr. Wexlar on rounds today and he didn't make any guesses. We talked about my blurry vision, and i've got it narrowed down to being more like double vision, in that i can focus on things but often see another image close by. Dr W is concerned about the blood counts, specifically the stalled and slightly retreating white count. The plan tomorrow is for lots of tests: Bone marrow biopsy (with atavan and narcotic lolipop) MRI, and if those two aren't conclusive I'll also get a lumbar puncture, this time under the x-ray in radiology by someone who knows their stuff. Dr. W was hesitant to say anything or make any guesses today, just said he needs to get more information, which I can appreciate. So, again, we wait!
In the meantime, I totally impressed Diane. My nurse, Val, dropped off my growth hormone shot about 5:30, and asked if I needed help giving it to myself. I declined, and about shocked Di out of her shoes by cleaning a small spot on my belly, jamming the needle in and squeezing in the growth factor shot. It's funny--I never thought I'd be able to give myself shots, but when faced with actually having to do it, it really isn't that big of a deal. I even like it better than when the nurse does it, because I have control. Funny how that is.
Well, going to get going and spend time with Di. I haven't heard from many of you lately and am beginning to feel like a Pink Floyd song. Is there anybody out there?
Met with Dr. Wexlar on rounds today and he didn't make any guesses. We talked about my blurry vision, and i've got it narrowed down to being more like double vision, in that i can focus on things but often see another image close by. Dr W is concerned about the blood counts, specifically the stalled and slightly retreating white count. The plan tomorrow is for lots of tests: Bone marrow biopsy (with atavan and narcotic lolipop) MRI, and if those two aren't conclusive I'll also get a lumbar puncture, this time under the x-ray in radiology by someone who knows their stuff. Dr. W was hesitant to say anything or make any guesses today, just said he needs to get more information, which I can appreciate. So, again, we wait!
In the meantime, I totally impressed Diane. My nurse, Val, dropped off my growth hormone shot about 5:30, and asked if I needed help giving it to myself. I declined, and about shocked Di out of her shoes by cleaning a small spot on my belly, jamming the needle in and squeezing in the growth factor shot. It's funny--I never thought I'd be able to give myself shots, but when faced with actually having to do it, it really isn't that big of a deal. I even like it better than when the nurse does it, because I have control. Funny how that is.
Well, going to get going and spend time with Di. I haven't heard from many of you lately and am beginning to feel like a Pink Floyd song. Is there anybody out there?
Saturday, August 05, 2006
Holding on...and liking it
Getting more back to normal here today. Di showed up last night which was a great development. Didn't sleep very well due to being in bed most of the day Friday. I took a more pro-active stance when waking up. When my nurse came in about 8 a.m. I asked her to find out the results of the blood test I took at 5 a.m. As it turns out, my platelets had dipped slightly and white count stayed exactly the same. I got out of bed, and hit the treadmill before breakfast, knowing they'd have to give me platelets and benadryl and hydrocortizone later on, pretty much binding me to my bed for 4-6 hours. Had a really vigorous workout, came back and my breakfast was waiting. Made quick work of the breakfast -- eggs and bacon and english muffins, oh my! -- and called the nurse to tape my dressing up for the shower. Hopped in the shower, cleaned myself up, brushed with the mouth care stuff and got dressed. Wasn't even 10:00 AM yet! Meanwhile, the nurse had re-made my bed with fresh sheets. Still not done, I called the pharmacy about these growth factor shots that, several days ago, were supposed to ship and arrive Friday at All Ready. According to Dad and peggy, they did not arrive at all. The pharmacy that was chosen for me called back, and said that they didn't ship the growth factor shots after all, and we made arrangements for the shots to be delivered here at Roswell Monday, as no one is promising or expecting me to be discharged before then.
After all that, it wasn't even lunchtime! Felt very good to be in charge of my day for a change, getting all the stuff done and out of the way so I could enjoy the platelety comfort of drugs and sleep all afternoon. I will try to repeat the performance in the future.
Dr. Wexlar came in about the same time as my lunch came (again). He basically reiterated the tests: White cells too low, need platelets, no leaving the hospital until counts go up. I had just gotten all the pre-plately drugs, and was pretty hyper actually. Told him that my blurry vision had started again. He said if it persists, another lumbar puncture on monday, this time done in radiology by a pro. Getting these guys trained with the right attitude is a good thing ;-)
It's weird, now that I have no promises or prospects of actually leaving, I feel quite a bit better about being in the hospital. It really would have sucked if they let me out too early, and we had to make the trip all the way back to buffalo. Still annoyed at the doctor for letting the confusion happen in the first place, but I am finally getting over it and getting on with treatment.
Dad came to pick up mom this afternoon and spend a couple of hours visiting. Nice to see him. Had a good time talking shop and catching up on random Binghamtonyness. They seemed sad when they left....
Thanks for reading
Matt
After all that, it wasn't even lunchtime! Felt very good to be in charge of my day for a change, getting all the stuff done and out of the way so I could enjoy the platelety comfort of drugs and sleep all afternoon. I will try to repeat the performance in the future.
Dr. Wexlar came in about the same time as my lunch came (again). He basically reiterated the tests: White cells too low, need platelets, no leaving the hospital until counts go up. I had just gotten all the pre-plately drugs, and was pretty hyper actually. Told him that my blurry vision had started again. He said if it persists, another lumbar puncture on monday, this time done in radiology by a pro. Getting these guys trained with the right attitude is a good thing ;-)
It's weird, now that I have no promises or prospects of actually leaving, I feel quite a bit better about being in the hospital. It really would have sucked if they let me out too early, and we had to make the trip all the way back to buffalo. Still annoyed at the doctor for letting the confusion happen in the first place, but I am finally getting over it and getting on with treatment.
Dad came to pick up mom this afternoon and spend a couple of hours visiting. Nice to see him. Had a good time talking shop and catching up on random Binghamtonyness. They seemed sad when they left....
Thanks for reading
Matt
Friday, August 04, 2006
Waffle me discharge
It's been a weird couple of days. Been getting a hard and fast lesson in how hospital life can be. Looks like Dr. Wexlar spoke out of turn a bit on Wednesday about the Bone Marrow transplant and my imminent discharge. After speaking with him for quite sometime wednesday night, I emailed my nurse coordinar, kind of like the liason between Dr. Baer and myself, asking for some clarification on the matter, particulary timing of the bone marrow transplant process and follow up. The Nurse Coordinator emailed me back in the morning and said she's be over to talk to me about everything. She seemed concerned.
When the nurse coordinator showed up the next afternoon, she said she was quite surprised I'd heard such a definite decision about the Bone Marrow procedure, as she had been talking to Dr. Baer that morning and the good Dr. has been doing some research on the very fact of when or even whether such a transplant would be implemented. Apparently I have a rare form of ALL, which does not necessarily place me in the risk category where Bone Marrow Transplant is prescribed. Because my disease is rarer than the average ALL, Dr. Baer has been searching for supporting evidence of what to do with me. Hence, the surprise over the opposite opinion being told to me by Dr. Wexlar, as Dr. Baer doesn't even quite know what to do yet. It may be that I go through the whole of my chemo and not have a transplant. I may go through only part of the chemo. What the nurse coordinator made clear to me is that decision has not been made yet, and really won't be made for a couple of weeks yet, or perhaps even longer.
For the future, the nurse coordinator/liason told me this: Major decisions about my case are made only by Dr. Baer. She is my attending physician and all of those decisions go through her. Other physicians are on the case in her absence, but it's Baer's show, and she decides the biggies.
All this has been compounded on the fact that on Wednesday night Dr. Wexlar told me my blood levels were rising and I was going to be discharged today. Well, on thursday my White Blood Cell count dropped to .29. I was told then that I wouldn't be allowed to leave until Saturday. Fine. Today, I was informed that the white cell count dropped again, to .26. Argh! After telling me that, Dr. Wexlar finally said that they are not going to make any more predictions about discharge, that I will be discharged when my blood levels rise again, and to just plan on being here until that happens. This statement of course would have been fine in the first place, had the doctor not raised my hopes of leaving and maybe actually going home to Vestal for a few days well before I thought possible. As of now, I don't know when or whether that is going to happen at all.
It wasn't like they were kidding around about discharge, either. Preparations were being made. In the past couple of days was dropped off what must be several hundred dollars worth of the drugs I am to take once I go outpatient. A home health nurse met with me yesterday and showed me how to purge my central line out with these special Hepharine shots, as well as showing me how to change the dressing and other accoutrements that go along with it. Last night and tonight the nurses here observed while I gave myself the subcutaneous growth hormone shots that I will need to give myself every day. A different home health aid came today with all my bandages, line care supplies and spare parts, and we went through the whole procedure again so I would be comfortable with it. I now can change my dressing, change the little tippy things that go on my catheter, purge the line, give myself shots--I'm a regular Matthew nurse here, but still stuck in the hospital. I guess I'm glad I know all this--I had to learn how to do it sometime anyway -- and I'm glad they didn't discharge me in an unhealthy state, but I just can't understand why the doctors would have jumped the gun so much. I was in no hurry to leave; they were the ones who got all excited, and I pay the price. If it helps at all, most everyone on the nursing staff says that this kind of crap is pretty normal, is frustrating for every patient and family member, and everyone wishes it could be different. Well, of course!
So, anyway, learned a lot in the past couple of days. I'm still at Roswell, with this new knowledge, and am actually feeling better now about everything that I've kind of let go of my expectations. Awfully hard on a guy though. In the future, I'm going to be a lot more skeptical about everything I hear, unless it comes from Dr. Baer herself.
Pecking order for future reference:
Attending Physician: Dr. Baer--Makes any and all major decisions about my case period.
Physician on rotation: Dr. Wexlar, Dr. Wang--Make smaller day to day decisions about care, can offer opinions on major procedures and treatments, but these opinions should be taken with a grain of salt, as they must be finalized by Dr. Baer.
Nurse Practitioner: Rotation physician's eveys and ears, can prescribe small drugs and does the examining and bad-news-breaking when appropriate. Often a good liason between myself and Physician on rotation
I wish someone had told me this was the pecking order to begin with, as much of my misunderstanding and stress during all of this has come from not knowing this pecking order. As usual, however, I do eventually figure things out for myself!
Cheers and hope this wasn't to rambling of a post.--Matt
When the nurse coordinator showed up the next afternoon, she said she was quite surprised I'd heard such a definite decision about the Bone Marrow procedure, as she had been talking to Dr. Baer that morning and the good Dr. has been doing some research on the very fact of when or even whether such a transplant would be implemented. Apparently I have a rare form of ALL, which does not necessarily place me in the risk category where Bone Marrow Transplant is prescribed. Because my disease is rarer than the average ALL, Dr. Baer has been searching for supporting evidence of what to do with me. Hence, the surprise over the opposite opinion being told to me by Dr. Wexlar, as Dr. Baer doesn't even quite know what to do yet. It may be that I go through the whole of my chemo and not have a transplant. I may go through only part of the chemo. What the nurse coordinator made clear to me is that decision has not been made yet, and really won't be made for a couple of weeks yet, or perhaps even longer.
For the future, the nurse coordinator/liason told me this: Major decisions about my case are made only by Dr. Baer. She is my attending physician and all of those decisions go through her. Other physicians are on the case in her absence, but it's Baer's show, and she decides the biggies.
All this has been compounded on the fact that on Wednesday night Dr. Wexlar told me my blood levels were rising and I was going to be discharged today. Well, on thursday my White Blood Cell count dropped to .29. I was told then that I wouldn't be allowed to leave until Saturday. Fine. Today, I was informed that the white cell count dropped again, to .26. Argh! After telling me that, Dr. Wexlar finally said that they are not going to make any more predictions about discharge, that I will be discharged when my blood levels rise again, and to just plan on being here until that happens. This statement of course would have been fine in the first place, had the doctor not raised my hopes of leaving and maybe actually going home to Vestal for a few days well before I thought possible. As of now, I don't know when or whether that is going to happen at all.
It wasn't like they were kidding around about discharge, either. Preparations were being made. In the past couple of days was dropped off what must be several hundred dollars worth of the drugs I am to take once I go outpatient. A home health nurse met with me yesterday and showed me how to purge my central line out with these special Hepharine shots, as well as showing me how to change the dressing and other accoutrements that go along with it. Last night and tonight the nurses here observed while I gave myself the subcutaneous growth hormone shots that I will need to give myself every day. A different home health aid came today with all my bandages, line care supplies and spare parts, and we went through the whole procedure again so I would be comfortable with it. I now can change my dressing, change the little tippy things that go on my catheter, purge the line, give myself shots--I'm a regular Matthew nurse here, but still stuck in the hospital. I guess I'm glad I know all this--I had to learn how to do it sometime anyway -- and I'm glad they didn't discharge me in an unhealthy state, but I just can't understand why the doctors would have jumped the gun so much. I was in no hurry to leave; they were the ones who got all excited, and I pay the price. If it helps at all, most everyone on the nursing staff says that this kind of crap is pretty normal, is frustrating for every patient and family member, and everyone wishes it could be different. Well, of course!
So, anyway, learned a lot in the past couple of days. I'm still at Roswell, with this new knowledge, and am actually feeling better now about everything that I've kind of let go of my expectations. Awfully hard on a guy though. In the future, I'm going to be a lot more skeptical about everything I hear, unless it comes from Dr. Baer herself.
Pecking order for future reference:
Attending Physician: Dr. Baer--Makes any and all major decisions about my case period.
Physician on rotation: Dr. Wexlar, Dr. Wang--Make smaller day to day decisions about care, can offer opinions on major procedures and treatments, but these opinions should be taken with a grain of salt, as they must be finalized by Dr. Baer.
Nurse Practitioner: Rotation physician's eveys and ears, can prescribe small drugs and does the examining and bad-news-breaking when appropriate. Often a good liason between myself and Physician on rotation
I wish someone had told me this was the pecking order to begin with, as much of my misunderstanding and stress during all of this has come from not knowing this pecking order. As usual, however, I do eventually figure things out for myself!
Cheers and hope this wasn't to rambling of a post.--Matt
Tuesday, August 01, 2006
News of discharge and beyond...
Had a very important meeting today with Dr. Wexlar. Here's the scoop. This week my chemo is focused, for a change, not on killing bad cells, but bringing back the good cells that I have and building up my immune system. This will be done with hormones (the L-aspariginase shot) growth factor, etc. What we are attempting to do is what I rationalize in my head as raising my "autoimmune quotient." That is, the medication and treatment I receive this week will raise that quotient so that I am healthy enough to live on the outside. My autoimmune quotient right now, Dr. Wexlar said, is about .28 of some measurement I'm not entirely sure of the name. During the week, my antibiotics, antifungals and other autoiummune builders will slowly be scaled back, while the growth hormones etc will be increased. When that autoimmune quotient reaches .50, the very next day I will be released, provided I have acquired no infections in the meantime. What this means is, at the very earliest I will be discharged to outpatient care by Friday night, provided no infections and everything going as planned. Big ifs. At the very worst, I think, I will be discharged by the beginning of the week.
Regardless of when I am discharged there will be about a week of downtime between the end of module "A" of my chemotherapy and the beginning of module B. Dr Wexlar said that it is possible for me to return to Binghamton during this time, but I am thinking that is probably not the best idea. To me, it's not worth the risk of the drive or possible infection. I would rather get settled here in my new home in Buffalo during that time. I have to donate sperm so that Diane and I can have kids when this is all over, and that must take place before Module B begins anyhow, so I will be busy visiting that clinic, too.
I have aain contacted the social work housing coordinator about a place to stay , and informed her that I could be discharged as early as Friday night. That way, if we have to push things back, at least I will be in line for the places that I would prefer. So we will see how that goes.
I then asked Dr. Wexlar if a decision had been made about the bone marrow transplant. One has. The doctors want to proceed with the typing for a bone marrow donor from the list of 42 that was found in the nationwide databank, with the ultimate goal of giving me a bone marrow transplant. Even if they had a donor lined up today, however, they would not proceed with the transplant until at least module b, c, and possibly d of my chemo were completed. Some of what module b and C address is leukemia inside the central nervous system. Though the doctors have no indication of any lukemia inside the CNS, it is not prudent to go ahead with a BMT without treating first and making sure no leukemic cells are hiding in the spinal fluid, cord or brain. And it is very hard to go back, once a transplant has taken place, because the doctors don't want to kill the shiny new bone marrow cells that will be growing inside me. At the same time, module b and c double back and kill any leftover lukemic cells in the bone marrow, which have to be completely gone before transplant can occur.
Even if I had a bone marrow donor (actually no one donates marrow, they donate stem cells overproduced as a result of medication. But we'll call it marrow now for short) ready to donate tomorrow then, It will be a month or three before the transplant can proceed. In the meantime the doctors will test, retest and finalize candidates, so when I am ready and the donor is ready, all the planets will fall into place and I will have a perfectly successful bone marrow transplant, and ultimately I will be cured.
Dr. Wexlar told me, and wanted me to tell all of you, that this is a long process. Understand that as good as I am feeling today (which is great) It will probably be two years before I feel this well again. Two years is a long time, but it's my only and definitely the best alternative. Though I may do better than that timewise, in two years I can be sure of a cure. I'll have new bone marrow and a new immune system for the price of one. I will be out of the hospital for a long time and home and back to work before then, but that's the actual timeframe for a full cure, in case anyone wants to roll that around in their heads and think about it for awhile.
So, when all the planets are aligned here in a couple of months and a donor has been lined up, this is what I can expect. I will be readmitted to the same floor over here at Roswell Park. Going to see what I can do to get a better view next time. Be nice to see the city! Anyhow, I'll be readmitted and they will immediately start a new, stronger regimin of chemotherapy that will last at least a week, as well as antibiotics, antifungals, basically reestablishing my artifical autoiummune shield. After a bone marrow biopsy to confirm that yes, indeed, all the bad cells are now gone, they will stop the chemo and start the transplant. What they are transplanting is not bone marrow. The donor will be given doses of hormones to make him or her overproduce stem cells from his healthy bone marrow. These stem cells will fill up his bone marrow cavity, and will spill over into his or her bloodstream. These stem cells form the basis for red cells, white cells, hemoglobin, platelets, and other clotting factors in my blood. These stem cells will then be harvested in a machine that I imagine is quite like the platelet donation machine some of you will be donating your platelets into within the next few days. The stem cells are taken, the donor's blood is returned. I will then receive these stem cells into my bloodstream via a transfusion, the same way I receive all the other blood products though my central line. I will also receive anti-rejection drugs, as even though I will have a perfect match for the donated cells, some alleals etc may not be exact, and we need to suppress the body's natural defense mechanism to avoid the stem cells rejecting my body.
These stem cells are very smart little guys. They want to go to to thier home, that is they want to find the bone marrow cavities. Henceforth they will find a cavity and start doing what they do best. Divide and conquer. From what I have read, in about 4-6 weeks they will have restored much of my blood creating function. They will begin to make good blood on their own! I will start to get a new immune system (we'll be watching the Autoiummune Quotient) Of course nothing will be perfect and I will not be cured yet, but I will be on my way. Remember what Dr. Wexlar said. To feel as good as I do today will probably take two years. Let's understand that, become accstomed to that and hopefully we will be pleasantly surprised any good results that might happen sooner.
I am very relieved to have heard this news today. At least, finally, we have a longterm plan we can follow and look forward to and there are many fewer what-ifs. We've got a plan, and now it's time to live it. I know with everyone's help I'll succeed and I will be cured. Now it's time to go about doing it.
Thank you everyone's love, care and thoughts so far. I couldn't have made it this far without such fantastic support, and I am thankful beyond words for everything that I have.
Thanks again.
Matt
Regardless of when I am discharged there will be about a week of downtime between the end of module "A" of my chemotherapy and the beginning of module B. Dr Wexlar said that it is possible for me to return to Binghamton during this time, but I am thinking that is probably not the best idea. To me, it's not worth the risk of the drive or possible infection. I would rather get settled here in my new home in Buffalo during that time. I have to donate sperm so that Diane and I can have kids when this is all over, and that must take place before Module B begins anyhow, so I will be busy visiting that clinic, too.
I have aain contacted the social work housing coordinator about a place to stay , and informed her that I could be discharged as early as Friday night. That way, if we have to push things back, at least I will be in line for the places that I would prefer. So we will see how that goes.
I then asked Dr. Wexlar if a decision had been made about the bone marrow transplant. One has. The doctors want to proceed with the typing for a bone marrow donor from the list of 42 that was found in the nationwide databank, with the ultimate goal of giving me a bone marrow transplant. Even if they had a donor lined up today, however, they would not proceed with the transplant until at least module b, c, and possibly d of my chemo were completed. Some of what module b and C address is leukemia inside the central nervous system. Though the doctors have no indication of any lukemia inside the CNS, it is not prudent to go ahead with a BMT without treating first and making sure no leukemic cells are hiding in the spinal fluid, cord or brain. And it is very hard to go back, once a transplant has taken place, because the doctors don't want to kill the shiny new bone marrow cells that will be growing inside me. At the same time, module b and c double back and kill any leftover lukemic cells in the bone marrow, which have to be completely gone before transplant can occur.
Even if I had a bone marrow donor (actually no one donates marrow, they donate stem cells overproduced as a result of medication. But we'll call it marrow now for short) ready to donate tomorrow then, It will be a month or three before the transplant can proceed. In the meantime the doctors will test, retest and finalize candidates, so when I am ready and the donor is ready, all the planets will fall into place and I will have a perfectly successful bone marrow transplant, and ultimately I will be cured.
Dr. Wexlar told me, and wanted me to tell all of you, that this is a long process. Understand that as good as I am feeling today (which is great) It will probably be two years before I feel this well again. Two years is a long time, but it's my only and definitely the best alternative. Though I may do better than that timewise, in two years I can be sure of a cure. I'll have new bone marrow and a new immune system for the price of one. I will be out of the hospital for a long time and home and back to work before then, but that's the actual timeframe for a full cure, in case anyone wants to roll that around in their heads and think about it for awhile.
So, when all the planets are aligned here in a couple of months and a donor has been lined up, this is what I can expect. I will be readmitted to the same floor over here at Roswell Park. Going to see what I can do to get a better view next time. Be nice to see the city! Anyhow, I'll be readmitted and they will immediately start a new, stronger regimin of chemotherapy that will last at least a week, as well as antibiotics, antifungals, basically reestablishing my artifical autoiummune shield. After a bone marrow biopsy to confirm that yes, indeed, all the bad cells are now gone, they will stop the chemo and start the transplant. What they are transplanting is not bone marrow. The donor will be given doses of hormones to make him or her overproduce stem cells from his healthy bone marrow. These stem cells will fill up his bone marrow cavity, and will spill over into his or her bloodstream. These stem cells form the basis for red cells, white cells, hemoglobin, platelets, and other clotting factors in my blood. These stem cells will then be harvested in a machine that I imagine is quite like the platelet donation machine some of you will be donating your platelets into within the next few days. The stem cells are taken, the donor's blood is returned. I will then receive these stem cells into my bloodstream via a transfusion, the same way I receive all the other blood products though my central line. I will also receive anti-rejection drugs, as even though I will have a perfect match for the donated cells, some alleals etc may not be exact, and we need to suppress the body's natural defense mechanism to avoid the stem cells rejecting my body.
These stem cells are very smart little guys. They want to go to to thier home, that is they want to find the bone marrow cavities. Henceforth they will find a cavity and start doing what they do best. Divide and conquer. From what I have read, in about 4-6 weeks they will have restored much of my blood creating function. They will begin to make good blood on their own! I will start to get a new immune system (we'll be watching the Autoiummune Quotient) Of course nothing will be perfect and I will not be cured yet, but I will be on my way. Remember what Dr. Wexlar said. To feel as good as I do today will probably take two years. Let's understand that, become accstomed to that and hopefully we will be pleasantly surprised any good results that might happen sooner.
I am very relieved to have heard this news today. At least, finally, we have a longterm plan we can follow and look forward to and there are many fewer what-ifs. We've got a plan, and now it's time to live it. I know with everyone's help I'll succeed and I will be cured. Now it's time to go about doing it.
Thank you everyone's love, care and thoughts so far. I couldn't have made it this far without such fantastic support, and I am thankful beyond words for everything that I have.
Thanks again.
Matt
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