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.

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.

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!

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

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.
...............................

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

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

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.

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.

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.

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.

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.

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.

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!

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!

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

Running the gamut

The funny thing about getting treated at Roswell Park is you get to experience the entire gamut of human competence.
You get the great people, like Dr. Wang, Dr. Baer and Barb, and the nurses and the cafeteria workers (yes, even the cafeteria workers are cool).
But then you get the not so great people, like the pharmacist who , charged with ordering the chemotherapy drug on Friday, sent the order to the drug company, but neglected to stick around for the tracking number.
So me, he of the relapsed Leukemia, did not get the swanky new chemo drug I was expecting today, likely due in my opinion to one person's case of Friday afternoon disease.
You know what friday afternoon disease, is, right? It's closely related to the Monday morning sickness, and cousin of the ever-popular Monday-morning car failure plague that sweeps the nation's office buildings on rainy, cloudy beginnings of the week around the country.
The day wasn't a total wash, however. I did get my fancy new PICC line, a catheter which was threaded into my arm, through my veins and very close to my heart. It looks a lot like my original central line catheter, except it is blue and sticking out of my left arm. It's very attractive.
So, tomorrow I get this new fancy drug (maybe), a long hydration, and hopefully a bit more peace of mind. Time to kill the cancer cells!!

Relapse

In college, I would have called it dramatic irony.
The last few weeks had been fantastic. I had returned to work, returned to my social life, reassumed the duties and the social connections so important to myself and my family. I'd been greeted by warm, happy people many times a day, people whose warm wishes were met with one response. "I feel great!," I told most everyone. "I feel even better now than I did a year ago.
But I found out on Friday that my leukemia has relapsed.
The worry began Wednesday during a follow up visit to Roswell park for a bone marrow biopsy. Dr. Wang had met with us, and eventually told me that my blood tests revealed that I could not have the biopsy for which we had travelled to Buffalo. My blood counts had not recovered the way they should, and though this was somewhat concerning, at that moment it was more of a clerical problem when it came to the biopsy. The doctors needed to do the biopsy when my counts had reached a certain level, and not before.
We left for home a bit disappointed, but not worried. About 4:30 p.m. Dr. Wang called me on my home phone: There was something weird with the blood tests done earlier that day, and I would need to return to RPCI the next Wednesday, a week before the next scheduled appointment we had made that morning.
I, of course, was concerned. Panic would be a better description. So I got on the phone to Barb Anderson, trusty research nurse, who assured me she would get me into the clinic on Friday for a biopsy.
Barb has this great way of getting things done, and everything was quickly set up for Friday. All that was left was the waiting and the worry. Barb had explained the problem with the blood tests. The tests had revealed 3% lymphoblasts, an immature white blood cell. It is normal for one's body to make one or two of these occasionally, but 3% is at least 3 times what is acceptable for the norm. The lymphoblasts found in blood are often decendents of leukemic stem cells in the marrow. Hence the doctors' concern.
So, Friday morning I got in the Scion about 6 a.m. and headed up to Buffalo. I had decided that no matter what the news, it would be easier on me to keep my head down, get up there, get the news and deal with it. As such, I was worried, but once on the road with Starbucks and the radio, it was just like any other trip.
Dr. Wang performed the Biopsy about 12:00. I have described this procedure before, and Dr. Wang did the often painful operation with patience and expertise, and I had no pain whatsoever.
Beforehand she had explained the plan. If I had a relapse, and the evidence certainly was pointing that way, even from the preliminary tests done Wednesday, I would have to start chemotherapy immediately. Eventually I would need a bone marrow transplant, just as soon as I could get the leukemic cells depressed enough to do the transplant. "You have a lot of treatment ahead of you," she said.
As I was chewing on all of this out in the lobby, calling people and generally nursing my sore backside (the biopsy is done in a spot that is irritated by sitting), Dr. Wang came bursting out of the hematology clinic directly across from me. She thrust the papers in her hand into my lap, and pointed under the "blast" section.
There were 15% blasts in my blood. The thing about this, she explained, is that generally a high amount of blasts in the peripheral (veins and arteries) blood means even more leukemic cells in the marrow. This meant that I almost certainly had a relapse.
After that, things moved quickly and the results of that day's biopsy were almost beside the point. I was set up for an appointment Monday morning in the chemo clinic for the administration of a newly approved drug just for people with relapsed T-cell ALL. Dr. Wang and I agreed we would immediately reactivate my transplant donor search, and recontact the donors who had already been matched to my genetic markers. Lodging arrangements were made, insurance issues were worked out, appointments were confirmed.
Meanwhile, the results of the biopsy came back showing the disease had definitely returned. This was for real!
I have been slow to like Dr. Wang. We got off on the wrong foot when I was inpatient at Roswell in July 2006. But I'm really glad I chose her. She worked the entire afternoon on my case, in a hands-on way that made sure things got done. I am very grateful for her quick action. In addition, she has done a fantastic job of explaining my options and has very patiently and personally advised me of what is going to happen next.
So, what's next: Monday up to Roswell for this chemo. The new stuff will be administered Monday, Wednesday and Friday. I'll stay in the area for a few more days after the treatment for observation and some testing and screening for the bone marrow transplant. If all works out, I'll head back into the hospital for the BMT in late May. I'll get into what all that entails when the time gets closer.
In the meantime, I'm of course not going to work, have gone back on disability. Aside from that, Diane and I are doing great. Believe it or not, it is so much a relief to know what's wrong and have a plan in place to get the problem fixed. Even though that problem means many more days in the hospital, and much more time separated from my life, family and friends, it's the only thing to do.
Thank everyone so much for their support up until this point, and I'll try to post regularly with updates and explanations as they come along.

SORRY

Hey folks:

Haven't posted in awhile as there hasn't been much news. But the big points: I'm down to just a few weeks left of chemo. I've two more sessions of the high-dose stuff, the first starting March 26 and the second two weeks following. This means by the middle of April or so I'll be ready to head back to work, which is great news. I'm getting really bored, so this will be a blessing.

After the major chemo is over, I'll still be taking oral chemo (Methotrexate and 6-MP) for about two years, get weekly blood checks and head up to Roswell one Wednesday a month for an exam and occasionally a bone marrow biopsy.

As it happens, Dr. Baer -- my attending physician -- Is leaving Roswell Park in the middle of April for a very prestigious position at the University of Maryland's cancer center. I wish her well, though I am sad to hear she's leaving as she has been excellent and a real asset to my recovery. For several reasons I have chosen Dr. Wang to replace her as my attending. I am assured she is up to the task.

Otherwise not too much to tell. Sorry for not posting. It's funny...as I get feeling better it gets harder to post, and I understand many of you have been asking. You can probably expect the posts to be somewhat limited as I go from being my "sick" self to my "healthy" self. I guess that's just the way I do things, but I'll try to put some posts up when I can. It is nice to hear that people are thinking of me.
-Matt

A good day at Roswell Park. No kidding!

Today everyone did their jobs right at Roswell Park. I can happily report my chemo treatment is a complete success.
To review: I was seated for my appoitment nearly minutes after arriving. My blood counts were that of a healthy man, more or less. The proper orders were and followed, I was given my shot in a reasonabe amount of time, and I will be out of here by 2:00 p.m. Maybe we'll even be home by dark!
For the uninitiated, this efficiency has not always been the case. But I'm not about to go into that now. For the record, I give credit where credit is due. Credit due to the Roswell Park chemo infusion team! Credit delivered!
Barb Anderson, doo-bee extraordinare and crack research nurse, stopped by to see me. We solved the worlds problems. I probably made barb late for her lunch meeting and for that I repeat my apology publicly.
Only way the day could be better is a Franziskaner over at Ulrich's, the german brau-house just down the street. Think I can sneak one in before leaving?