Sunday, April 20, 2014

How am I feeling...

How are you? This is a seemingly benign, common question, but it is a really loaded question for me these days. My automatic reaction is "great", or "fine", but "hanging in there" or "good under the circumstances" is probably more appropriate.  One response seems to be true all the time these days is that I feel very tired pretty much regardless of the time of day. I am consistently the first to bed in our house and last up in the morning, and if I can get a nap in I do. I know it only gets worse from here but we bought new sheets over Spring Break so my bed is a very comfy place to be!!

It was nice to have this weekend without recovering from a big procedure and bracing for chemo. My neutrophils are technically dangerously low meaning lots of food restrictions, can't garden or be around flowers, and should not be in crowds (i.e., rooms with more than 8 people). My doctor and I agreed a couple weeks ago that we were both comfortable with me continuing life as usual with me doing what I can to limit my exposure to pick up an infection my body is not prepared to fight. I go in tomorrow morning to donate what feels like a huge amount of blood to science. I will also get a quick read on my counts which I fear are not good and mean more restrictions.

Friday the FedEx enveloppe arrived from NIH with 13 vials they need to have filled and FedExed back tomorrow. They are also requesting a CBC and Differential from tomorrow which will mean a minimum of 14 vials of blood. I am not long on good blood these days so am planning to have this make me pass out.

NIH will be able to definitely confirm I have plain-Jane hairy cell (HCL-C) and not a variant (HCL-V). So far my diagnosis has been HCL-C. If it turns out it is really HCL-V then that would explain why my duration of response to cladribine was so short and would cause us to change course on plans for treatment.

I think there are three options now. The plan in each case is to do the treatment at UC but as a patient registered on an NIH trial....
- pentostatin and rituximab (which has been the base plan)
- cladribine and rituximab (not excited about this option)
- rituximab alone, anticipating that it will not work so I can qualify to get montetuxemab after.

I am totally unclear on what the tests from this week will show that will help us re-make this decision. Hopefully will get more clarity over the next couple of days.  My children are definitely (unknowingly) keeping my mind off the leukemia. Margaret has been quizzing me about what cabinets, countertops and back splash I want in our kitchen. (No, we are not planning to remodel any time soon - she has just watched too much HGTV!!) We had a good hang out weekend, just wish I had a better idea of what was going to happen beyond tomorrow!

4 comments:

  1. Beth, I think about you every day and I will keep you in my prayers. I believe it is for the best to wait a bit and get the information that will lead towards the right treatment for you. I am truly sad to know that your cancer is back and I hope you can hang in there with the same strenght you did last time. If there is anything I can do to help, please let me know. A big hug, Mitchelle Salazar

    ReplyDelete
  2. Hi Beth - just caught up on your last few weeks of blogs and wanted to let you know that I'm thinking of you. Please let me know if there is anything I can do for you or the family and know that you have so much support around you. You're not alone!

    Laura

    P.S. - speaking from experience, hair is SO overrated! :)

    ReplyDelete
  3. Hey there!! I just wanted to check in via the blogspot. I am thinking of you, Chad and the girls. I'll call later this week, but glad things are moving ahead with NIH. I know you and Chad have so much going on this week. Just know the McWiter's are with you!

    ReplyDelete
  4. Stay strong Beth, we are all pulling for you. Nick, AS Watson team, UK

    ReplyDelete