Wednesday, October 19, 2011

The Same, But Different

Since I'm back in the same hospital being treated for the same disease as I was nine months ago, a lot is obviously the same. The IV pole, the quiet grunting and occasional chirping of the pump, the semi-regular interruptions for vitals or blood or medications or consultation, Rectal Swab Tuesdays, the expected but unpredictable fevers and chills and sweats.

Not surprisingly, there are a lot of the same staff. Their usual greeting is something like, "It is so nice to see you again." I know what they mean, and I'm glad they're taking care of me because they are really good, but I can't help thinking, you know what would be even nicer? If I weren't here!

There are also a lot of differences. I have already mentioned the improved food service, where the changes are so large they deserve their own post.

The treatment plan is different. Last time, I got a cocktail of three drugs over seven days. This time, I got two drugs on day one, three days off, with a repeat yesterday. One of the drugs is the same as last time, but at a much higher dose. The new one is bright blue, and it's pretty disturbing to see something that color running into your body. It is also disturbing to have your pee turn blue, but I was prepared for that.

Another different side effect, and I'm not sure which chemical is responsible, is the onset of rigors about an hour after the infusions are done. In the span of 10 minutes, I go from having a slight chill to mild shivering to intense full-body shaking. The first time it happened, I was pretty freaked out, but it stopped as soon as they gave me some Tylenol. Last night, I could tell it was coming. Since I was already taking Tylenol, they gave me Demerol which stopped the shaking in about 20 minutes.

My fitness level is different. In January I had recently run a half marathon and had been lifting weights regularly, so I was in very good shape for someone my age. While I was able to build up my running over the summer and had started some strength work, I was still a long way from getting back to my January fitness level. And with the late August round of chemo, I was reduced to walking. So, I come in to this round less fit than I was the first time, though still relatively fit compared to the population at large.

My marrow is different. My understanding is that in January, 50% of the blood cells in my marrow were blasts. That's a lot of leukemia. This time, 20% of the blood cells in my marrow are blasts, and half of the marrow cells carry the XX chromosome, which means they came from my sister. 50% blasts versus 20% works in my favor, because there is less leukemia to kill than before. I thought that having half of the cells by from my sister would also be helpful, but it doesn't matter. Before the transplant, we kill them all and start from a clean slate.

My perspective is different. The first time through, it didn't really occur to me that there might be a second time through. Kill the leukemia, do the transplant, recover — sure, there could be (and were) some painful or uncomfortable bumps along the road, but it was still a story with a relatively simple arc. This time, I am aware that this is the second of X attempts to beat the leukemia. I'm hoping that when we get through all the wrangling, we find out that X=2. But I know it might be 3. Or more. For now, 2 is my new favorite number.

7 comments:

  1. Love your posts, but hate the reason for them. We continue to keep you in our daily prayers.

    Jack & Mary Ellen
    (Kate's parents)

    ReplyDelete
  2. For as long as I can remember, 3 has been my favorite number. But now it's 2, too.

    ReplyDelete
  3. "Second time's a charm" has a better ring to it than I expected. Given that the food has improved, does this mean no Chemo Cookbook like last time?
    JNR

    ReplyDelete
  4. That's exactly what I told Joe - that there's no need to stand on ceremony to stick to old stuffy conventions - "second time's a charm" is the new, avant garde adage!

    ReplyDelete
  5. "One is the loneliest number"...we're all with you in sprit with your second treatment.
    Heather and Marsh

    ReplyDelete
  6. You're tough - second time will do it.

    ReplyDelete