Englishgirl in Indiana

I’m still at home! It is so amazing. I have a whole new appreciation for my home and my garden and being with my family and simply enjoying what’s around me.

I was supposed to head back to Cleveland last week but my counts, particularly platelets were still too low to continue with further chemo and I had to go in on Friday for another platelet transfusion. So Dr. S gave me a few more days. Monday my counts were up and doing great but one of my lymph nodes, a particularly persistent one at the back of my head, had come up again. So I called Julie and Dr. S and they decided they needed to see me, so on Tuesday K and I trekked back up to Cleveland. I’m really glad we did as we had a good meeting and I feel like I have some sort of goal. Obviously the goal is the transplant but as to how to get to that point I wasn’t quite sure. Basically Dr. S told me that what they need to see is a period of remission, about four weeks/a month where my counts come back up to normal but I am seemingly “free” of the disease, i.e. no pesky lymph nodes, before doing the transplant. He is pleased with my progress so far but a little concerned that I was still getting this lymph node appearing. However because that was the only one and that otherwise I seem to be doing well, he decided to take me off the steroids and give me another week to see how things go. In other words can I manage to get through another week of being somewhat asymptomatic before we do the next round? If I am able to make it through another week then I’ll have another session of the initial bit of the McGrath chemo regime, here at Lutheran, (yeah!) and then probably another one, maybe even one more after that, before aiming to do the transplant around September. As I said the goal is to have a good period of inactive longevity between each chemo sessions. Dr. S also gave me some other regime options and told me about a new research study they have for a new drug targeted at T-cell and NK T-cell lymphomas that I could participate in. I feel really positive about my options even though I know ultimately we’re aiming for the transplant. I also received the confirmation that my brother is a definite DNA match for bone marrow transplant, which is great news.

I went in to-day for my bi-weekly labs and had fantastic results. My WBC is at 12.4 which is actually over normal but that’s okay. The Neurlasta stem cell stimulant they give me can cause the white blood cells to go into overdrive. Either way I’m not neutropenic and can eat salads! My Hgb is at 10.6, still low but climbing and my platelets are at 174, which is the highest they’re been for months and within the normal range. Totally woo-hoo! As I said to Dr. S and K, for the first time in a very long time I feel “normal”. The body still aches a bit, my hair is very thin and my muscles are completely pathetic, still no jumping up the steps or anything like that, but I feel very well. I even managed to get into the office yesterday and sit at my desk for forty-five minutes or so before heading out for Amberly’s birthday lunch. It was so nice to be DIET again although all the excitement did have me in bed before 9 pm last night! Apparently I can still only cope with so much. I will try and head into the office for a few hours next week as well - it’s super to finally be close enough to consider doing that.

As so often in the last couple of weeks I feel so blessed to be at home and to have such terrific friends and family. They have truly been amazing and I am consistently choked up when I think about how much time my parents are devoting to caring for me and helping us and how much support friends are providing. So incredibly humbling.

And I’m still loving my bed and smooshy, white duvet!

Filed under: bone marrow disorder, cancer, T-cell Lymphoma on June 12th, 2008