Saturday, September 27, 2008

I had a cold that developed into a nasty fever of about 103 degrees, but some antibiotics and lots of cold packs beat it down. It was actually quite amazing how quickly I was able to recover. And so this is exactly why I need to be in the hospital for recovery as long as I do.

Wednesday, September 24, 2008

I actually finished 13 rounds of radiation (last Tuesday) and went back to the hospital for chemo. It was slightly premature, as I was checked into urgent care in the middle of the night on Wednesday morning in the AM. I was experiencing a severe amount of pain due to a massive upswing in my blast cells. Translation: the cancer was giving me lots of unprecedented grief, so I came in early and got lots and lots and lots of pain medication. I started chemo last Thursday and finished 5 days of that just the other day. I will be recovering in the hospital from here on out. It is almost inevitable that I will get a fever/infection during this time, which is why I must remain in the hospital under close supervision. I will also be undergoing various tests, including more bone marrow tests and spinal taps. When it has been confirmed that that cancer is in an acceptable state (remission), I will move on to the bone marrow transplantation.

The side effects of the chemo have been very manageable this time around, and I am incredibly grateful for that. So, if anyone is interested in stopping by and saying hi during the next few weeks, then please do so by all means. I am in 1232A (12th floor) and will likely remain there the whole time. I get around the floor, so just give me a ring if I'm not in my room (646 637 3402). Sloan-Kettering is located at 67th/68th and First Avenue/York Avenue.

I will be sending out a "blood drive" request via the coordinators here at Sloan very soon. For those of you in the New York area, this is a good opportunity to give blood directly to me, if you wish. I will be getting many transfusions (red cells and platelets) this month. My red cell type is A- and platelet type matching doesn't really matter. If you are interested, please stop by when the email goes out to you. At the very least, even if you don't match me someone else on my floor will be in need of your help. For everyone else in the country, blood is always needed at your local bank/hospital.

As for bone marrow transplantation, I will try to get more information if you are interested in joining one of the registries. I am already pre-screened and match plenty of potential donors, so anything you would do would be strictly for the public good. It would be a big commitment, but of course, you people are nice, so that's expected of you by now!

Friday, September 12, 2008

Radiation is scheduled to be completed 9/15, and I will return to the hospital for one month on 9/17 if all goes according to plan.

Tuesday, September 9, 2008

HLA (Bone Marrow) matching was not successful for my brother and sister, so I will be matching to an unrelated donor for my anticipated bone marrow transplant. Initial searches show multiple 10/10 donor matches out there, which is very encouraging--it's just a matter of coordinating the whole complicated process. The donor has to be healthy, available, still willing, etc., and I have to be ready to receive the transplant after successful treatments. There are also complications with insurance regarding the matching process, but I am confident that we will be able to address that. (Oddly, the very costly process of finding the donor is not typically covered, but the actual transplant is. There is grant money we have already applied for to help.)

For those out there who are feeling especially altruistic, as always you have the ability to get your blood tested and join the national donor registry. Do not bother trying to match to me--the chances are extremely remote and more trouble than it would be worth. However, I have been positively overwhelmed by the show of support from everyone willing to help save my life this way. What is probably easiest for everyone wanting to help in some way is to simply donate blood at their local blood bank. It is quick and easy (15 mins), and blood is always needed everywhere around the country. Donate platelets if you have the time (about an hour). As for me personally, send me your positive vibes. And send Susan Starbucks cards (we like Whole Foods, too)!

Monday, September 8, 2008

Radiation treatments are moving along. I have at least another 6 (once a day, all during weekdays), and then I should be ready to proceed to do more chemo. Until then, I have been feeling very energized by my medications (constant dosages of steriods), even though I continue to experience sub-normal blood levels, which normally keeps me off my feet. It's been a very pleasant artificial boost while I deal with the radiation issue.

Here's a quick example of how the steriods have been affecting my appetite by showing you what I ate yesterday. (As a point of comparison, the only thing I might eat for one week during chemo might be a bagel and some french fries):
1) 1/2 bag Fritos
2) 1/2 pumpkin muffin
3) 1 giant chicken Indian dosa
4) 5 hot dogs
5) 3 plums
6) 4 pineapple wedges
7) 1/2 large mushroom and olive pizza
8) 10 chocolate chip cookies, 2 glasses milk
9) 1/2 caesar salad