Sunday, July 31, 2011

Continued Progress

Hi, everyone.

Just a quick update to let you know that all continues to go well with Nancy. She is through the first 100 days after her bone marrow transplant, which the doctors called the 'critical period'. She is driving, going to work part time, and no longer needs to have a caregiver around. Her stamina continues to improve, her weight is stable, she looks good, and her hair is growing back very nicely and evenly :-)

Her blood counts are still low, she is still anemic, as her bone marrow slowly builds back up. The biopsy a few weeks ago showed that her bone marrow is more than 98% genetically from her sister. So the transplant has taken. We already knew that, since she hasn't needed a blood transfusion since April -- she is clearly making her own blood -- and they are not seeing abnormal cells indicating any leukemia presence in her weekly blood samples.

Nancy is going to taper off the immunosuppressive drug over the next month, which will speed up the growth of marrow, and also increase the risk of a graft/host reaction. She is now going to the clinic once a week, and will be going once every two weeks (and they are removing her catheter next week!) However, we are not going to be able to visit her family cabin in Canada this year, and we are both a bit saddened by that. Her doctor does not want her far from state-of-the-art medical facilities as they taper her drugs off.

But all in all, we are doing fine, and life is starting to feel rather normal again, now that she is driving and running her own errands and going to work. We've gone out to dinner a few times, and while she is still avoiding big crowds, she's doing social things with friends. Call her up, make a date. Invite me too!


Wednesday, July 6, 2011

Too much date, not enough info

Hello, friends!

I have an update from Nancy's bone marrow biopsy, which was 12 days ago, and I apologize for taking so long to get this out. The news seems to be good, perhaps even very good, but I don't fully understand the information, so I'm not sure. Those of you who know me will appreciate how frustrated I feel!

In general, Nancy continues to do well, her dosage of tachrolimus (an immune system suppressor) has been reduced again, and she has permission to drive. Her strength and stamina and appetite continue to improve little by little. She seems to have stopped losing weight, and is happily climbing into clothes from slender younger days. Her hair is coming back. We spent the 4th of July weekend up at our family cabin near Mount Lassen, and enjoyed the time together very much.

Here's the medical update. We don't have all the biopsy results, but we know (1) that Nancy's lymphoblast count has dropped to 0.5%, the lymphoblasts look normal, and (2) a FISH test for leukemia genetic abnormalities came back negative. I don't fully understand what it all means, but I'll tell you what I know.

Lymphoblasts are immature blood cells, a normal part of bone marrow. With her leukemia, the percentage of lymphoblasts can be very high, like 20%, and that would be bad. A lymphoblast count below 1% indicates that her leukemia is "technically in remission". After her initial chemotherapy finished in February, her count was 0.5%, and when she returned to the hospital for the transplant, her count was 2.5%. So the fact that it's down to 0.5% suggests that her new immune system is starting to manage the leukemia.

The fact that the lymphoblasts look normal is very good -- the cancer might still be visible and apparent, but it's not.

There are lots of types of FISH tests, and all I know is that a test that was positive six months ago is now showing negative. That seems to be a good sign too.

On the down side, we don't know details about the engraftment of her stem cell transplant, and her various blood cell counts continue to be low. For example, her hematocrit is around 29, which is anemic, but not dangerous That's why she doesn't have a lot of stamina. Creation of bone marrow and her new immune system is proceeding, but not very quickly. (This is actually what the doctors want, a nice, gradual adaptation to her new immune system, and is one reason why she has been on tachrolimus.) And we cannot forget that she is a "high-risk patient".

So it's all still just a big fuzzy place of faith and intention for me. I deliberately write these notes so that you can all help us keep energy focused on her healing. There are other things swirling around us, support for our parents, loss of our dog and Nancy's uncle, financial stress, the fun of creating future plans. But we still need and appreciate your support and prayers, and I choose to keep these notes centered on her recovery.

By the way, my sister Camille is staying with us for a couple of weeks to help out, and that has been a pleasure. Now that Nancy is driving, Camille doesn't have as much to do, and by the time she heads home, we shouldn't need to have a caregiver helping out during the day at all. That is a big step too.