This week I'm celebrating reaching the half-way point! Fifty days out of 100. I can't wait. I might even sneak home on a day-trip this weekend.
The bean counters are at it again, wouldn't you know. There was an article about this in the paper, which reported that my employer let about 1300 people go on Tuesday. If you know why the computer in "2001" was called HAL, then you know what company that is. The rumor is that our whole division is up for sale. But so far, I'm still employed. I've been through far too many of these things already, to tell the truth.
I'm trying to come up with a "bright side", but when 4 people in your immediate group are let go, and another bails out for another job on his own, you know that staying isn't going to be much fun, either. But, we'll make the best of it.
I still have virtually no symptoms of graft vs. host disease. The small rash I have the doctors don't consider GVHD, which makes me glad I don't have a rash they do consider GVHD. The only thing left is to stay healthy, and wait to see if I get the graft vs. myeloma effect, which would be a good thing.
A Second Cancer
11 months ago
6 comments:
Great job! Hang in there!
Do they hammer you with chemo drugs for several days straight before the infusion? Do you have to stay hooked up to an electric IV infuser throughout the procedure? Do they monitor the ccs of urine super-closely? If you're allowed out, I'm guessing allogeneic is more "relaxed" on all three of these counts.
I tried to strike a balance between routine and varied activities to pass the time, but I could only travel to half of the third floor.
Allogeneic sounds like a longer stay than autologous, but if you can go out, you can do more activities to pass the time. What activities do you participate in each day (in and out of the hospital)?
How do you pass the time? We'd love to know.
Remember: afterward, you may find a local group (leukemia - lymphoma society, etc.) sponsoring a bone marrow reunion dinner, riverboat cruise, etc. just for survivors. I'm attending a dinner May 18.
One of these days, I hope to meet Steve. I can't find his web page right now, but I'll try to post a link later. He went through a couple of transplants and was about to contact the local Hospice when scans showed the cancer had vanished.
I had heard that people in my situation had a 17 percent chance of living five years. But Steve pointed out to me in an e-mail that these statistics are meaningless. And with no symptoms for over two years, I have to agree!
I know I won't see you here (the dinner in Cincinnati), but I keep wishing. Our local group will often fly a donor in for the dinner. One year, an LA police officer was a donor for a person right here in town!
Take care.
Saturndude, good to hear from you again.
There are several types of stem cell transplants. To those in the know, I can simply say my transplant is an unrelated mini, and that about says it all. I say unrelated because the risks are higher than from a related donor, and I say mini to indicate that this was a non-myleoablative transplant. I think most, and both of my, autologous transplants are completely myleoablative, meaning that the bone marrow is completely wiped out. A mini doesn't completely wipe out the bone marrow, which lessens the risk.
So, in just a few words, people can understand what sort of risk I am exposed to.
For my autologous transplants, I got chemo for 2 days, and then my own stem cells back. For this transplant, I got less chemo over 3 days, then a full-body irradiation session, and then the donor stem cells. The only night in the hospital was the night I received the cells.
I'd call it a pump instead of an electric IV infuser, and I am only on it when I need an infusion. I am doing some extra hydration using a home-care battery operated pump, to replace some magnesium that the anti-rejection drugs eat up, and the hydration protects my kidneys. They only record how much fluid I say I'm drinking, not the urine output, they only do that if I'm hospitalized.
I can tell you, a mini transplant is much less impactive than a myleoablative transplant, autologous or allogeneic, but for an allogeneic transplant of any kind, mini or not, it takes longer not just to recover, but to watch for graft vs. host disease.
I'm very happy I haven't been hospitalized. I had a non-specific fever after my second autologous, and was in the hospital for a week last November. I was really glad to go home after that.
At first my days were pretty full with various tests and meetings with staff and doctors. But now I just have a blood draw twice a week, and meet with the doctors once a week. I work from home over the computer, so I've continued that, and started increasing the number of hours I work this week. I was working 8 to 10 hours per week before. We go for walks, see movies, do puzzles, things like that.
I hear what you're saying about those percentage numbers, as I really struggled with the mortality rates being as high as 50% for this type of transplant. After you make your choice, you have to ignore them.
I remember your talking about the cruise before. Once I happened to meet someone who had a stem cell transplant, and it would be good to know others. But you're right, I definitely won't be there this time. I'll have to remember to look up a support group.
Gary
This is interesting. I always thought that allogeneic involved being in the hospital 24/7 for the duration.
But it seems like you reside at an apartment, spending almost no time in the hospital. Thanks for blogging this picture for us. It is very enlightening.
The infuser I had was, I believe, made by Abbot Labs (Abbott?). Seems like the kind of product where there is only one manufacturer. (and yes, the "nurse call" buttons in the shower were unbelievably sensitive. I don't even remember touching them, but I must have, two or three times).
Here's the link to Steve's pages:
http://home.cinci.rr.com/thespriggs
Outdated, perhaps. But AFAIK, he's still doing fine. I'm still trying to contact him.
There is a non-profit group here in Cincy, the Wellness Community. They have classes on yoga and meditation and workshops on aspects of living with cancer and beating cancer. It is largely older people/patients who attend them. I'm young (turned 41 on April 30, 2007). I'm wondering when they're going to do more "active" stuff, like giving Kendo lessons (a cross between fencing and martial arts). Or perhaps a motorcycle cruise-in for survivors (hint: NEVER on both of these).
You will still be the same person you were before this happened. Take life on YOUR terms. Enjoy yourself.
How long have you lived in the Seattle area? I was about 2 hours from Seattle for a few days in 1979 (age 13) and it certainly was beautiful. Have you seen all the sights there? This sounds like a great time to appreciate them all over again.
I gotta go.
Saturndude
You're making me realize a couple ways I'm very fortunate. I'm pretty sure that for a non-mini transplant, I would have been scheduled to be hospitalized for a couple weeks at least, and more depending on how I was doing. So being able to be in remission from the autologous transplant and doing just a mini is really good.
The other way is that I had 3 good matching donors right off the bat! I read Steve's pages, and he did not have a donor, at the time, anyway. I hope he found one. I was told they'd be reluctant to start the process if I only had one donor, but with three, they went right ahead. And it was a good thing I had more than one, since the first one was ineligible.
Yes, we're in an apartment, overlooking the construction of a six story building, with all the day-time noise that comes with it. The crane went up just today.
I've always lived in the greater Seattle area, aside from a year and a half in Los Angeles and a year in Dallas, both of which only made me want to return. You never see everything, I guess, and things change, like the newly re-opened Seattle Art Museum. Each time I'm in Seattle for a transplant, we go for long walks in the larger parks, and we've toured our old neighborhood, and Pike Place Market.
I'm not so sure about being the same person. I'll admit, probably more so than I'd like, it's too easy to fall back on old habits. But it doesn't seem right for something as profound as this transplant to not affect one. I can even see it affecting someone negatively, but I hope to only be better.
Gary
Gary...(Lane here)
I was thrilled to see your comments on THE LIVES OF OTHERS! I think it is on my list of 10 best movies ever. The spy guy was so gray...just like the society they were all swimming in. I have recommended this movie more than any other.
It's good the movie served as a short escape...that's what movies are for!
Is it time for a new puzzle?
Congratulations on HALF WAY...
~Lane
¡Congradulations on the half-way point! Do not let that 17% thing worry you:
http://cancerguide.org/median_not_msg.html
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