Almost go-time, again

It’s been a crazy week. On Monday, I went to Children’s and had my broviac (central line) put in and had a bone marrow aspiration. I was admitted to the bone marrow unit where I stayed a few days, getting campath (chemo #3) and IVIG, in addition to other medications and monitoring.

I got to meet with a lot of my extended treatment team. One of my team members is a dietitian and with the small world we live in, we actually have a connection in that I worked with her sister or 11 years at Elmhurst! The dietitian session was really eye opening as I learned a lot about even more restrictions that are placed on me to keep me from getting sick. The good news is that although I still have my feeding tube and am on tube feed most of the day, the doctors have relented to let me have some solids earlier in the day, with my full liquids for the latter part of the day. The bad news is that I hadn’t realized all the ways food could make someone in my condition sick. I have heard many times over the years about the dangers of defrosting meat and poultry on the counter and how bacteria can form at certain temperatures. In addition to being forbidden to eat anything that has been counter-defrosted, the reverse is true. If someone cooks something for me that’s hot, they can’t just let it cool on the counter as the same bacteria could grow if it’s room temperature. Apparently, transferring food to smaller containers so they cool faster and can be refrigerated is what I need for any freshly cooked item. Big bags of food are breeding grounds for disease so only snack size bags or individually wrapped items can be eaten. Absolutely no fresh vegetables and only a few fruits (which have been scrubbed and peeled, like apples or oranges) are allowed. No berries at all. I have a whole handout with lists of approved and unapproved food items.

I also met with an amazing music therapist. Although we haven’t engaged in any music therapy yet, we’ve discussed how we see music therapy fitting in to my time inpatient and already have plans to start this coming week. I met with an intern whose expertise is relaxation and breathing and she did a short breathing exercise with me and mom and said she’ll be back to work with us again too.

I’ve had more blood work this week and my counts are really low. On the one hand, that means the chemo has been working (I still do it daily at home, plus the 2 other kinds I’ve gotten so far at Children’s) and that puts me in a great position for the bone marrow transplant, but on the other hand, it means that although I’m out of the hospital currently, I was instructed not to go anywhere or touch anything. I had hoped to spend some time with mom in stores today just being out (with my mask, of course) but it’s not allowed. It also means that I got neupogen 4 times this week, thankfully without a reaction. For those unaware, neupogen is a drug that helps bring your white counts back up after they’ve dropped too low (usually from chemo or radiation) and when I got neupogen back during my August hospitalization, I reacted with full body muscle spasms. Thankfully, this week, my body chose not to react in that fashion.

The plan, as I understand it now (it does change somewhat based on labs, etc) is to be admitted first thing Monday morning so I can immediately start my full day infusion of thymoglobulin. You may remember earlier blog posts about it, when I explained how the doctors give human t-cells to rabbits, then take the antibody response of the rabbits that kill the human t-cells and give it back to the human to kill off remaining t-cells. In May (or June?), I had 3 days of this at Presbyterian. I’m about to start another 3 days, however, Children’s doesn’t use rabbit thymoglobulin, they use horses! So I’m already part bunny, and now I’ll be part horse (who thinks of these things?). On Tuesday, I get the 4th type of chemo, thiotepa, and on Wednesday I have full body radiation. Apparently the radiation will take close to an hour and I’ll basically be in a room unmoving by myself, but the music therapist has already let me know that she can play music for me over the intercom to keep me calm during the procedure. Then Thursday afternoon starts the transplant. My donor’s marrow was divided into 3 bags so we start with a bag and if I tolerate it, we do a second bag on Thursday. Then I get a rest overnight and the third bag if needed is given Friday. From what I understand, it’s usually pretty anticlimactic, as it’s like getting a blood transfusion, of which I have had countless ones, including one just this past week (thank you blood donors!). I did find a video on YouTube on what is transplant day like: https://youtu.be/gbWJu5IjcU

I’m not sure how often I’ll be checking email or posting, but you can always send me a message through the UPMC send a card website (just like when I was at Presbyterian) by going to https://ecards.upmc.com and entering my name and selecting Children’s Hospital as the facility. I don’t know my room number yet, but I’ll be on unit 9B.