It’s amazing how much hair can fall out before you are completely bald. On the old chemo regimen I only lost about 50% of my hair and the rate of growth slowed significantly but it never all fell out. On the standard adult protocol chemo my hair is falling out everywhere. It will all be gone in a couple days. It doesn’t bother me too much but it’s very itchy and little hairs are everywhere. I was standing at the mirror brushing cascades of hair off with my hand and trying not to clog the sink (sorry, Joe) and Amira came in and said, “Mom! You look like a bald eagle!” Later in the day she wanted to take my picture and she went and got me a wig first.
This week I will have 3 days at the James. Monday is blood labs to check my levels. Thursday and Friday I will be doing my pre-transplant testing and paperwork. Friday I was emailed a calendar of events that starts Thursday at noon and ends Friday at 4:00. Testing includes labs, pulmonary function test, chest X-ray, MUGA scan and meetings with financial counselor, social worker, three different clinical trial coordinators transplant education and the doctor. Other scheduled tests include an EKG, physical exam, bone marrow aspirate and biopsy and a lumbar puncture. I could worry about all this but I won’t. I have some of the best doctors in the country and I will do whatever they tell me to do. It has worked so far.
I felt very well this weekend and my blood levels are up but still used precautions in public to try to keep me from getting sick. Xander was home from school with a cough and I tried not to get too close but I was exposed. I just have to hope that the anti-virals and my sad amount of white blood cells are enough. I had energy this weekend to go to a party and out to dinner with Jeff and another night make roast beef and potatoes for my hungry family. I took the kids to a children’s group grief support class at the hospice center where they made picture frames, Christmas cookies and talked about their memories of PopPop. Kid’s grief groups are sad with some kids who have lost parents or siblings. Every day right now is a trial but we are still together. We are still a family. We took Amira to see Santa and she asked him for something she hadn’t mentioned before so I had to do rush shipping from American Girl. Xander wouldn’t see Santa, of course, so no surprise requests from him yet.
This is supposed to be my good time and I’m trying to make the most of it but by evening all I want to do is snuggle in warm under the covers. I’m making full use of the TVs that are obscenely large for this small house and my Amazon Prime, Hulu Plus, Netflix and HBO Go accounts. I should probably read a book. A book requires too much effort at times. I try to not think.