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?

If I had $1,000,000 and no better way to spend it...

Awhile ago Doug Camin Sent me this link

http://www.nelsap.org/ny/innsbruckusa.html

Apparently in the late sixties some wise person or persons decided it would be a good idea to open a ski area just south of Binghamton. Called Innsbruck USA it's about five miles up Pennsylvania Avenue, and you can see it there off of the road to the right.

I remember talking to John Byce about a year ago and his mentioning that there was this really cool ski area, just south of Binghamton, in the seventies, but it closed. He had regaled me with tales of skiing and parties and general after-work schussing...and, oh well it sounded like a heluva good time.

Man, I can't believe the people in Bingoland let this place go. Given unlimited funds and all my other expenses being paid, I'd love get behind an effort to revive this place. Think of it: instead of heading downtown to the sportsbar, head 10 minutes the other way and get on the T-bar. Sweet! This could work. Of course, I'm not sure I want to bet the mortgage on it, hence my reticence to walk up to Partner's Trust and ask for a loan, but you get the idea. Also, I know nothing about running a ski area, other than I like to ski and I know it requires an "area."

Wonder why the county didn't pick up on this where the former owners left off. I mean, they're backing the En-Joie golf course when Endicott couldn't hack it. Why not skiing? Instead, looks like they just took it back for taxes, made it a public park, and left it to the kind of tree-huggers who hike in the summer, not hug trees in the glades in the winter.
Just isn't fair. So brother, can you spare $1,000,000?

Long time no see

Sorry I haven;t posted on awhile. "Your fans miss you," Diane says, and I guess you do. At least one has given me a gentle push via email. So this is what has happened recently:

1.) My efforts in grief to Roswell about the inefficiencies and delays have prompted the bigwigs to respond. When I was up there earlier this week,the very accomodating nurse department chief visited me on two separate days, first to get my concerns first hand, then to merely check up on me.
Not sure what's going to come of my complaint, but it does appear as though they are taking me seriously. That's satisfying, anyway.

2) I've started my second-to-last round of chemo. This is quite exciting. Monday, Tuesday and Wednesday of this week I had heavy doses of Cytoxan and Ara-C, but I haven't felt too many side effects. Beginning to get mouth sores similar to the last round of chemo, but with somewhat less intensity. Three more days this month I will go up-and-back to Roswell for a shots of Erwinia. One unfortunate bit of Roswell getting its stuff together is I WILL have to stay for two hours after the shot for "observation." I understand this is necessary. It is still a pain in the ass.

3)On the way home from Roswell yesterday I diverted my route to Owego to see another printer's shop. John Henry and his wife Kathy were excellent hosts. They showed me around their shop and we exchanged tips, horror stories and generally talked business. I had a great time. It was lucky, as a very large lake effect snowstorm had blown off to the north, sparing me from driving through the anticipated 2-3" per hour.

That's about it lately. So now, according to Diane, my "peeps" should be satisfied. I'm triying to figure out how easter candy can be properly satisfied.

Crappy Weather

This is the wierdest winter on record. Can't understand where this odd, warm, crappy, soggy wet stuff came from, but it's really for the birds. Does anyone really prefer this? You're seeing a view of our favorite spot in the house, the window off of our kitchen looking out on the back yard. Usually we get a nice, white winter scene, but today is a soggy, muddy mess that only depresses, not inspires.

Sure am glad skiing isn't an option for me this year. It's been OK for driving to buffalo, but so little snow has fallen, and so little cold weather has been sustained, I don't think anyone in New York has really had a decent ski day all winter.

My sweet ride

This is my sweet Scion XB, which about a year ago we covered with an alligator on all sides to celebrate and advertise the new DI press installed at All Ready. Since I've had cancer I've reliquished possession of the car to my Dad, who has been using it for deliveries and other company business, as by all rights it is the company car. But I miss my little scion and I've taken ownership of it again on weekends, and driving it is a hoot.
Kind of a boring weekend here in Vestal. The weather is sincerely BLAH. I think I would prefer 10 degree freezing-ness we are typically greeted with in January, as this not-warm-enough-to-sunbathe-but-just-cold-enough-to-be-rainy-and-sloppy weather is no fun. Though it has made commuting to Roswell Park quite a bit easier, I feel bad for the ski areas and anyone else who enjoys winter. I don't, however, imagine this is global warming. I bet the people out West in Colorado and the other snowbound Rocky Mountain regions have a pretty short temper with the Global Warming types, as they dig out their cars from the 10 or so odd feet of the white stuff that has fallen this year.
No appointments this week, so I've got all the time in the world to hang out in soggy, gray Vestal. Whoohoo! Fun times.

Some really cool people are doing a really cool thing for me tonight. A bunch of my old pipe dream friends are gathered at a club in NYC called Mad River Grill. Headed up by my former colleagues and friends, it sounds like just about every pipe dreamer I ever knew is hanging out for my benefit, at the benefit.
All I can say is thanks everyone. I really wish I could be there.
My cat Star who is sitting next to me wants me to tell you that, really, I'm doing fine and well on the way to being on the mend.
Thanks again folks. It's really wierd to think about all of you there together just to support little old me. I talked to a few of you tonight and it reminded me how lucky I am to have such good friends. It's been too long. This summer, let's get together and drink some beers and toast to our health and the good times we've had. Aw, shucks I'm getting sappy, but I'm tired and I'll bet a few of you won't mind.
--Matt
P.S. Soopa coopa did you show up?

I've had it.

I totally blew up at a nurse, a nurse practitioner and a "patient advocate" today.I'd just been held up at Roswell Park for hours past what I had expected. Again. One time too many.
There is a systemic problem with the outpatient infusion clinic at Roswell. They can't keep an appointment. Not your usual problem with not keeping appointments, mind you, but a gross, irresponsible inability to keep appointments. One can plan, on any given day, that if one's appointment is set for any time after about 9 AM, one can expect a minimum of a two-hour wait just to get seated in the clinic. Once seated, expect another hour to see a nurse practitioner. After that, perhaps 45 minutes more to get one's chemo. The wait gets worse as the day goes on.
These delays are hurting patients, the staff and the hospital's reputation:
Patient attiude: It is the talk of the waiting rooms that appointments are so egregiously not kept. Usually one will hear about the hour and a half wait, the two hour wait, the three hour wait, etc. No one bothers to apologize for the problem, either. The wait is so bad and so long that the hospital has put a band-aid on the problem. They use pagers, the kind of light-and-vibrate things they give you at Outback Steakhouse or Olive Garden when there is a long wait. In the case of Roswell, the reservations have been made weeks or months in advance. Is this situation really right?
Patient Care The long delay means, even if a patient lives in Buffalo, he is tired and annoyed by the time he finally gets his chemo. If the patient is from afar, it may be the wait is on top of a long drive in starting with the wee hours. This frustration is taken out on the nurses, who are just doing their best within the system. Still, mistakes are inevitable. Two weeks in a row, I had to demand a chemo drug that was odmitted. For several weeks, an order was written requiring observation after this Erwinia. Today, for some reason, someone noticed and the order was enforced. Not a problem if prompt attention had been paid. But it was the end of a long series of disappointments, more waiting, and more disappointments. My appointment was at 10:00. I was seated at 10:45, which is actually pretty early. I didn't get my chemo, a stupid, simple shot of Erwinia( which, granted is not a routine drug, but I AM the only person in the hospital who gets it, so it shouldn't have been hard to find.) until 12:30. As the patient advocate (basically a customer liason) said to me, "You just seem like you've had it." And she was about right. What would have happened who didn't know everything he needed to get that day, before he showed up?
Follow the money: Hospitals don't seem to like to talk about money. But I wonder if Roswell Park knows how much money they are losing with their inefficiency, especially considering the chemo clinic.
It seems to me a basic flaw exists in the attention paid to certain periods of time. More effort is spent focusing on the time chemotherapy takes. But the time chemotherapy takes is not up for change. There's only so much stuff one can get into his body in an hour. Some drugs require observation, for a specific period of time. It is not appropriate to fight the time medical procedures take, and I think medical procedures are not the reason things are delayed. I think the delays boil down to 1) a lack of a manager or expediter to move things along when they need to be moved along, and b) a belief that once a patient is seated, the pressure is off.
My contention is that once a patient is seated, the pressure is on! It oughta be showtime. Fifteen minutes shouldn't go by between the time a person is seated and the time chemo starts flowing through their viens. A half hour would be great. But what I don't think they realize is the time people wait in chairs, inside the chemo clinic, is the time the WHOLE clinic is delayed.
One thing the patient advocate, who I spoke with at length while I was cooling my heels in the clinic for two hours today, requested I make some sugesstions. Here they are:
A. Treat chair time like gold. This time in the chair is the ONLY hope the clinic has of reaching a more on-time treatment rate, or increasing its throughput. We can't change chemo time, so everyone's got to figure a way to hustle. Patients should spend as little time in the chair when not getting chemo as possible.
2 Find alternatives to the chair. In other clinics, patients are returned to the lobby after an evaluation until a dr./ NP/ exam room is ready. Appointments are rarely late in other clinics, just chemo. So send us out of the chemo if things aren't ready! If observation or post counts are needed, don't keep us in the chair if another patient is waiting. There is very comfortable Stickley furniture in the lobby, and I am sure we could wait the proper amount of time then. The hours people would normally wait in the clinc chair would be spent in the less-scarce lobby seating, freeing up more space for more patients and enabling everyone to do the job accurately and efficiently.
3.Invest in any technology that will decrease labor and increase accuracy and speed of care. Wilson Hospital in Johnson City, a small generalist hospital, has these neat scanner guns. The nurse scans the order, scans the drug, scans the patients' wristband. Any drug, chemo or otherwise, is a 1-minute affair to confirm.
In the chemo clinic, one's nurse gets all the chemo, sets it down. Then the nurse has to go find another nurse. An odd ritual ensues, requiring basic ID information from me and having both nurses sign off on the orders and chemo confirming both are correct. So now we have two nurses, two clocks ticking, two sets of labor hours charged for a procedure that allready takes two or three times what it might take if a modern scanner system were in place. I don't know, but this seems like it could save a lot of time over 50 or 100 patients in a day.

That is about all, but realize why I am frustrated mostly is I entered this whole thing with only the best things to say about Roswell. And frankly, my care has turned out just great. But after so many days like today, there is just so much you can take. I had my fill today, and hence the problem that has probably earned me quite the reputation.
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PS: Becky: I'd like to email you back but the silly blogger program doesn't show your email. GRR.
Dustin: I miss Dustinland. And thanks for spreading the word about my blog.

Always ask for the good drugs

I am feeling much better in the last two days thanks to new drugs prescribed and acquired over the weekend.
I had been feeling super-crappy and hardly sleeping all week because of the stupid pain meds and flared up tongue sores and swollen tongue that had beset me recently after starting the Erwinia. The Oxycodon I was taking made me really irritable and edgy, and also very hyper. On Friday I ased Kelly Reese, a nurse practitioner, to prescribe something else for the pain. Remember: I can't take normal analgesics, as acetominophen and ibuprofen will hide a fever. Kelly prescribed Dialudid, a narcotic pain med with Hyrdromorphone as the active incredient. Meanwhile, the large shipment of gelclair was waiting for me at the clinic, and I started using it immediately.
The Dialudid prescription was a bit difficult to fill. I get the impression it's not prescribed all that often in Binghamton. Not that this should surprise anyone that I would need something a little bit out fo the ordinary, Friday night it wasn't available at CVS, and I just missed the Target Pharmacy closing at 9:00. Saturday morning I went back to target, and they didn't carry it, AND WOULDN"T BE ABLE TO GET IT UNTIL TUESDAY. I --calmly as possible -- explained just how badly I needed the drug. The nice pharmacist behind the counter offered to call Wegmans Pharmacy. Sure enough, wegmans had 90 2 MG pills of Dialudid!
I made A beeline for Wegmans and they filled my prescription. Within 1/2 hour of taking the first dose I felt like a normal person again. The pain was totally gone and I had a normal attitude and no fuzziness or dowsiness, and certainly I wasn't hyper. Meanwhile I continued to use the Gelclair after every meal, and its effects are helping to heal my poor tongue. It's no longer swollen, the sores are less inflamed and I'm needing the pain meds a lot less often. At first I was taking 1 pill every four hours, but today i'm down to one pill at waking, and didn'tm take another until about 6 PM. Yay for effective drugs!
Appointment for tomorrow at Roswell Park to get more Erwinia, and I'll probably need some platelets. We plan to show up early so we have half a chance of getting home tuesday night at a reasonable hour.

Sleepy nugget times

Star's grandma Valerie made the hit of the year with her present: A big, fluffy cat bed! We weren't sure star would want to use it, but amazingly she has been jumping right in nearly every night. The bed is atop a TV stand/dresser we have in our bedroom closet. She likes to be up high, and I think she likes to be high in our closet specifically because she can keep an eye on us. Isn't she quite the fearsome guardcat?

Forget rolaids! I spell relief G-e-l-c-l-a-i-r

One of the more "fun" parts of chemo is its ability to make you miserable in ways you never before thought possible. So it is the case with this new chemo I have been getting: Erwinia. Within a few hours of getting the first shot, I started to feel funny. My face swelled up, my cheeks were flushed, and in general I just didn't feel right. As I have gotten subsequent doses, the situation has deteriorated. I shaved several days ago (I think it was sunday) and had some razor burn. I still have the razor burn. It just doesn't want to heal.
Chemo has a devastating effect on the body, even at its most targeted. The chemo I take is aimed at killing cancerous white blood cells. At the same time, however, it kills good healthy white blood cells, and it also kills any of the body's "fast growing" cells, particularly those in the Mucous membranes.
The worst part of the killing spree has manifested itself in my mouth. I'm not sure if you can tell by this picture, but my tongue has swollen to about double its normal size and has these nasty lesions on the sides of it. The lesions are VERY painful. I had beern taking Oxycodon to manage the pain, but for some reason the Oxycodon was making me super agitated, even wired, and on edge all the time. I couldn't have been much fun to be around.
Because of my hyperactivity and loopiness, I stopped taking the Oxy after getting barely any sleep for the past few days. Last night I was able to sleep more or less all night long without tossing and turning. But when I woke up, it was there waiting for me: Shooting, stabbing, bone-pulverizing pain.
When I was in the hospital this summer there my mouth got a little bit sore, but nothing like it is now. Then I could just use the Peridex mouthwash and a mycelex troche(kind of like a lozenge) and my mouth would immediately feel better. That hasn't worked for this new problem. On Tuesday I was at Roswell for an Erwinia shot, and told Linda the nurse practitioner about the pain I was having. She gave me a box full of Gelclair samples to try. Gelclair is a gelatinous medicine that, when swished around in one's mouth, creates a protective coating over the sores so the exposed nerves don't light up like a painful Christmas Tree. It also is supposed to help the sores heal. I had tried the Gelclair in the clinic, and it worked great. Unfortunately that was the day I had my super low platelet count of less than 5000. After three bags of platelets and at least 4 hours of getting them, I was in a HURRY to get on the road and get home. Predictably, I left the samples on my tray in the clinic.
In even more pain on Wednesday, I called Roswell and asked Linda for a prescription for the Gelclair. , which she quickly ordered from Upstate Pharmacy. When the Gelclair didn't show up on thursday, I called upstate. THEY HAD NEVER SENT IT. Apparently the size or dosage or something wasn't available in its complete form, so instead of sending what they had, they sent nothing at all. Worst part was they didn't even tell me or the NP, so neither of us could pursue the medicine elsewhere. If I had known, I would have had the Vestal Target Pharmacy order the stuff, and would have had it by Thursday. When I called upstate on Thursday wondering where my stuff was. the lady on the phone said, "Well, when we send fedexes, we want to make sure we've got everything." What that means to me is she was worried more about the $20 Fedex package than relieving my several days of agonizing pain!
This may be the last prescription I ever fill from Upstate Pharmacy . I just can't tolerate an organization with that little of a clue.
Anyhow, it all turned out OK in the end. Di and I drove up to Roswell today for another Erwinia shot and the Vincristine, and a whole case of the Gelclair, probably 100 doses, was waiting for me at the nurses' station. I just used some before writing this blog entry, and I've got to tell you the stuff is sweet, sweet relief. Finally!

And God blessed us, every one

A very full belly and lots of laughs later, I've got to say this is really one of the best Christmases I can remember.
I know it will probably sound corny, but there were many days this year where I wondered if I'd even be around for Christmas. To my great relief and enjoyment, I was really more than around. From dinner all day yesterday with Di, Mom and Dad, to the feast at Phil's house in candor, to goofing around with the kids and their toys at Kathy and Mike's Owego home, everthing sparkled a bit more, everything seemed to mean more this year, because honestly I thought most of it would not include me.
So I ate a lot of food and talked a lot of talk and was probably way too hyper way too many times, but I don't really regret any of it. We had such a damn fine time and I think I really know what it is like to be grateful for the time with all of my family, in a different and very wonderful way from what I've had in the past.
You couldn't ask for a happier man than me at this point. Even though I'm on chemo and my mouth is sore and I'm tired, I am also completely satisfied. Without getting into too much hyperbole, this Christmas was just about as perfect as anyone can expect. Gives me a real charge going into the new year, this perspective that I hope will continue giving throughout the difficult days and weeks that I know are coming down the line.
Merry Christmas everyone! I hope your day was a fifth as special as the way I treasured mine.

Looks like I made it

Well today was a long day, but worth it. I picked dad up in vestal at about 5:55 today and we headed to buffalo. After the four hour drive there, the waiting in Roswell Park and the evaluation from my Nurse Practitioner, the famed Erwinia was given to me and I seem to be doing ok. Keep our fingers crossed though!
However this chemo has been much harder on me; my White Blood Cells are quite depressed (down from approx 10 k/ul monday to 1.47 today, and I am left with 57 platelets per n. That means I will probably skip the beebe gift exchange tomorrow, and not go to church on monday. I know the counts aren't very likely to increase, even though I am taking the neupogen white-blood cell shots every day. Will save myself for sunday dinner at mom and dad's, Phil's and Kathy and Mike's on Monday.

Very tired now. Going to watch TV and relax a bit. I am pooped!

MattK

Erwinia Erwinia....Er win with Erwinia

OK, sorry for the goofy title.
Barb Anderson (research nurse and generally good doo-bee) came to see me today at Roswell to sign a consent form for this fancy Erwinia drug. As it turns out, there has been some difficulty with getting it. Not so much a difficulty as someone used old numbers and did not expect the cost to go up by about 40%.
Ahh. Drug companies. Don't we love them? I think I should buy stock.
Anyhow, Roswell had to hold up on ordering it and get the new amount approved by blue cross, who promptly approved the discrepancy. Gee. They were nice about that, weren't they? I mean, in my work life if I quote somebody a price and then submit a price for billing that's $20 higher they will raise holy hell. But thousands? They might laugh me off the phone. Sure am glad BCBS had such a good attitude about it.
The long and the short: I probably won't have my dose scheduled for Tuesday, and maybe not friday, though I have offered to stay another day if necessary to get the shot. Barb is going to petition the study chair to allow me to have these pricey injections that I am missing at the end of this current round of treatment. Otherwise, the stuff will just go to waste, as no other cancer patients in the entire hospital --or according to the FDA, the country -- need this stuff.
Otherwise all is very well. I seem to be tolerating today's chemo just fine. The cytoxan (ominous, clear fluid) made my brain all funny and gave me a pain in the nose like you'd get if sniffing horseradish. The discomfort was quickly eased, however, by the daunarubicin, a chemo drug that has the color and consistency of red cool-aid.
Lots more fun for my week up here in Buffalo. Stay tuned..I'm here all week. Really, I am!

One Clingy Nugget

Star has just been all over me lately.
I'm not sure what it is. Maybe it's the cold weather, maybe its the fact that I'm around a lot. Maybe its because she's just a nugget, but for whatever reason, this cat is around all the time.
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Anyway, I'm doing well. After a weekend filled with social gathering (IE Ron and Dawn's STYP fiesta for the Christmas Holiday gift swap) I had my blood test today and, goody, it looks like my blood is finally doing what it is supposed to. I'll be heading up to Roswell Park for some good, old-fashioned FUN chemotherapy. It'll be a bit wierd, as I haven't been there in a while, but I'm sure I'll warm up to it soon 'nuf.

Othewise I've been spending an inordinate amount of time playing with my model trains and, oddly, cooking. On the trains bit (see how inordinate this is??) I've been using the excuse of Meg and Nate. On The cooking bit, well, I just like to cook. Plus, diane is back to work this week--we had a fun week together, so now as long as I am home I am helping with the cooking and the cleaning and the making of her lunches.

So, as promised at the beginning of this post, Star STILL won't leave me alone. She's sitting on my lap now, enjoying it while I write and staying up with me past my bedtime, despite of course the fact that I no longer really have a bedtime. . .

Birthdays with the Kenseys...

In the Kensey Household, we celebrate birthdays the old fashioned way: All at the same time!
Yesterday was my Birthday, Dec. 2. Today is Diane's Birhday, Dec. 3rd. I will reveal that yesterday i turned 28, but due to contractual obligations and the fact that I value my right eye tooth, I will not reveal Diane's age.
We had a nice time on my birthday. Spent most of it just hanging around, but got out of the house in the afternoon to visit Tom's on Main Street. See, a certain printer and lettershop has been bestowed with the honor of printing and mailing the sacred Tom's birthday cards and other such coupons. As loyal Tom's customers, Diane and I receive their regular mailings and the latest one caught our attention. Free coffee always catches our attention!
A full pound of Italian Espresso later -- we wouldn't just take the half pound, I mean, that would be silly and kind of cheap-looking, right? -- we were out of Toms and headed to Manley's to pick up some wingys. Later on that night, we ate a wonderful meal at Sabaidee, a Thai restaurant in Endwell, with my Mom and Dad. Though the service was a bit spotty and the bathrooms were somewhat less than perfectly desireable, we had a nice time. And what was with the fake crabmeat? I mean, does anyone who's actually ever had crabmeat really believe that the fake stuff is even close to the genuine article?

I had some pretty incredible news this week. First the good: Remember L-asparaginase, that chemo drug that gave me hives the size of Volkswagen Beetles? After that episode the Docs decided I wouldn't get that particular drug anymore, for fear of anaphylactic shock. Trouble is, the next round of chemo I am scheduled for requires this drug be given several times. Now, chemo has taken a whole new importance to me, as bone marrow biopsy has been tabled. I remembered someone mentioning this very expensive drug that comes from europe that is an alternative for difficult (you know, petulant or allergic) cases like me. Called Erwinia, the drug wasn't available before, but having a bit of time, I asked the good folks at Roswell to seek approval from my insurance company for the replacement chemo, which I was told costs about $30,000.
The long and she short of it? After several days of waiting and consternation, the Erwinia was approved! I'll be starting it as soon as it is made up and shipped to Buffalo. I was shocked. The people at roswell was shocked. One person there was so sure It would be denied that she bet me her paycheck it wouldn't come through. I forgave the debt for the sake of her two beautiful children and her desire to buy them christmas presents.

From the wierd an annoying department: So, Diane and I trekked up to Roswell Thursday for the startup of the new chemotherapy routine. Much like the old routine (the one I had in the hospital) the new module required a blood test at the outset. They kept me sitting in the chemo clinic a good two hours before a nurse practitioner, Linda, told me that my Absolute Neutrophil Count (ANC) had dropped to about .75, which is too low to start treatment. ANC is a formula based on the White Blood Cell count as well as some other factors. It was really wierd as my blood levels have been fairly stable for several weeks. Anyway, I was told to go to Broome Oncology Wednesday for bloodwork, and if my WBC levels rise and restore my ANC to a good enough baseline, I would probably start chemo friday the 8th. We'll see.

That's all for now folks...

Happy thanksgiving!

Today was thanksgiving and at 124 Earl Rd it was turkey, turkey and more turkey!
After years of trekking to 3 different homes on thanksgiving day, Diane and I last year decided we'd have turkey day at our house. Despite cancer and lots of travel and other issues, we made it happen. And there were only one or two screwups!
The guests showed up (some of them a bit early, but that was OK too.) The usually suspects: Mom, Dad, Kathy, Mike, Phil B., Shawn, Bill, Fedo, Uncle Dean, Pam, Meg and Nate dogg. DI had stayed up most of the night as she is wont to do, arranging the tables and generally fussing, but it all looked good and such, as her fussing always makes her projects look in the end.
I'd gotten the turkey in and it looked GREAT when I took it out of the oven at about 12:30. It was nice and brown and cooked evenly according to Pam's thermometer. (Someday pam, we will actually return your candy/meat thermometer.) The trick, however, was getting it out of the pan and onto a platter. I made several attempts with forks and tongs and praying and squeezing, and nothing seemed to want to coax the 22 pounds of scrumptious, dead birdmeat out of Kathy's black roasting pan.
Finally I grabbed ahold of the turkeys back legs and promptly lifted them and the entire turkey out of the pan. The resulting plop of the big heavy breast piece back into the pan slopped drippings all over the recently cleaned stovetop and left me holding the intact "dark meat" section (legs, thighs, wings and other pieces in my hands...
ANYWAY The turkey turned out OK in the end and we had a heckuva nice time with all the families together. After the last guest left at 5 pm diane and I plopped on the red barber's couch by the front door and didn't move for a half-hour. We have resolved, however to make this a tradition and host the thanksgiving meal next year....that is if everyone wants to come back!

Anyone want to flip a coin?

I'm sorry I haven't written much lately, folks. I guess I was just waiting for a chance to tell you about something significant. I'll get to that, but I'll fill you in on what's been happening in the meantime. Basically, chemo chemo and more chemo. I've been coming to Roswell every other week for three weeks, getting methotrexate in my spine and big bags of yellow-green fluid in my bloodstream. There have been delays and general annoyances, but things generally have been going according to plan.
Over the last few weeks, though, I have become somewhat bothered by the prospect of bone marrow transplant. I did a lot of reasearch, much of which reccomended that my particular type of leukemia responds well to chemotherapy, and that because of the pretty severe risks of bone marrow transplant it is usually reserved until if or when the leukemia relapses. After some effort, I finally got to meet with Dr. Baer today to discuss the matter.
Now, doctors being doctors, Dr. Baer would not tell me what to do. As I understood it, I have T-cell ALL, which is the kind of the disease that response best to chemotherapy. As it turns out, though I am T-cell positive, there is a slight anomaly with my genetics that raises my risks of relapse somewhat(or might not risk it at all, or might mean good things, as the doctors don't really know-it's that rare.). She also said that no one can tell the future, but either way--continue chemo or have the bone marrow transplant-- the choice of either treatment is perfectly reasonable.
More or less I could just about flip a coin!
So after meeting with Dr. Baer, Diane made a list of the pros and cons (she says thank you Tillie Tompson) we had discovered about each treatment. Though I have made my decision, I wonder what all of you might do if faced with this dilemna:

Bone Marrow Transplant.
Pros:
lower chances of relapse
RPCI good at preventing infection and Graft-Vs. Host Disease (nasty side effect of transplant)
A patient with young age, and in good health.
Two donors who are already typed and match
A patient who is already adjusted to chemo and lifestyle of sickeness.

Cons: Graft-vs. Host Disease and other infections
30+ days inpatient at Roswell
100+ days in recovery with a caregiver 24/7.
high risk of complications.
risk of DEATH (even a small risk is a big deal)
Uncertain what next step is if treatment doesn't take: second BMT more risky than first.

Continuing chemotherapy through two-year maintenance- no BMT.
Pro:
A patient who is responding well to treatment
Classified as T-cell ALL, which according to research is the "best" kind to have as far as treatment goes.
Intensive treatment ends February/March.
Easier on patient, less immediate risk for patient.
Dr. Baer: for chemotherapy "The only risk is relapse". And death was NOT mentioned.
Roswell uses cutting edge chemo treatments that research studies suggest.
Good chance of finding other donors later on if need be.
Leaves option for BMT open for later date should a relapse occur.
Typed donors can be contacted again later on if needed for transplant.

Cons:
Abnormality in 9 and 10 chromosomes and smallish number of T-cell genetic indicators play uncertain role in remission rate. Not necessarily a bad thing, not necessarily a good thing. No research exists for this specific abnormality- I'm just that weird.
2nd induction chemo can be resistant, but usually the cells can be "beaten down" enough to start transplant, according to Dr. Baer.
Increased age increases risk of difficulty.
typed donors may have moved or died or gone to Iraq or whatever, meaning more tests and time to find new donors.
Potential for relapse more likely with chemo only (as opposed to with BMT as treatment).

So, uh, notice anything about these lists? They're all about the same length. So, there's pretty good support for doing either thing. I've decided to stick with the chemo now and bet my money on the disease not going into remission. The way I look at it, either treatment I choose has plusses and minuses, but at least if I save transplant for a later date, I have it in my back pocket should a remission occur. I haven't told the doctors yet, but I plan to do so later in the week.

I never liked being a gambler. What would you do if you were dealt my hand?

Matt