So the pot pills did not work out so well. The kids went to my parents’ house for Memorial Day weekend, and on Saturday morning I started feeling sick. I took a pill at about 10 am, and I was fine for about an hour. But around 11, all of a sudden something in my head just clicked and I immediately had to sit down. I asked Bobby to bring me a pillow, and I spent the next few hours on the couch in a weird state of semi-hallucination. The world was spinning, I couldn’t stand up, I could barely talk. Bobby said every so often I would halfway sit up and ask him the same question I’d asked 20 minutes earlier. It was horrible. I don’t know why people pay money to feel like that. I hate being out of control. Finally, after a few hours, it started to wear off and I could finally fall asleep. Needless to say, I won’t be taking any more of those pills. I’ve decided to just stick with the Zofran for when the nausea gets really bad.
On a more positive note, I’ve got more hair on my head. It’s growing in really dark. I have a lot of fuzz on the back of my head, and then some on the top and left side. For some reason, there’s not so much on the right side yet. It looks pretty funny right now, but I’m hoping I might have a full head of fuzz by the time my next transplant rolls around. And my eyebrows are almost completely grown back in! No eyelashes yet, though.
Yesterday I went to see my transplant doctor, Dr. Solh. The plan for now is to do a few more treatments of brentuximab, since it seems to be working. Then we’ll do another PET scan to see what the masses are up to. If we need to, we’ll do some radiation at that time to finish shrinking them. If I can get to remission (no masses), my chances of the transplant working will be higher.
Another positive note – they found a 100% match for me through the registry. So with radiation and getting everything worked out with the donor, we are probably looking at a transplant date sometime in September. If you are interested in doing something to help out, please consider going to bethematch.org to become a registered donor. Even though I won’t know my donor, I will forever be grateful to them for their selfless gift of life. You can also donate blood or platelets. Locally it’s AtlantaBloodServices.com. Many thanks to Stephen and Wendy for their recent donation on my behalf!
So that’s where we are right now. Still taking it one day at a time, and still praying for energy, health, and remission!