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