Friday, September 24, 2010

Back from Texas

I went to MD Anderson last week to meet with their transplant specialists. I was also scheduled to have another bone marrow biopsy (super!), an echocardiogram, and some kind of test where I breathe into a tube to test my lung capacity to make sure my body can handle the rigors of the stem cell transplant. They changed my schedule around and added a PET and CT scan on Thursday and Friday. Not only that, but they moved the biopsy from Wednesday to Tuesday and since I hadn't planned on that, I left my Ativan back at Mike's Aunt's house. I started to panic at lunch when I realized it and worked quickly to get their nurse to prescribe me one pill so I could take it before the biopsy. Then I had to rush the pharmacy to get it in time. I managed to pick up the medication and take it 30 minutes before, but it was probably a little too late for it to take full effect. Mike wasn't allowed into the room with me (even though he didn't pass out during my last two procedures) so I grabbed my iPad for a music distraction, but I couldn't remember how to turn the dang volume up and had to give up so they could get started.

The procedure didn't go so well. I've either had a biopsy or an aspiration, but they combined both into one procedure - double ouch. The aspiration part is a funky kind of painful feeling and hard to describe. I think they pull the fluid out, so it's just a weird sensation. After the aspiration, they did the biopsy and that's when the tech ran into trouble. She couldn't get the need out of my bone. It was stuck, no matter how hard she pulled. I know this because she was telling me. She tried several times and while I thought about passing out, I also had visions of walking down the hall with the dang needle in my hip. She finally got it out, but the piece of bone she needed for the biopsy wouldn't come with it so she had to stick me again. Luckily it went better the second time - no stuck needle. It was not fun. That's why I hate bone marrow biopsies. Next time, I'm taking TWO Ativans.

I met with the doctor. He was/is concerned that my lymphoma is returning (and freaked out on me). I told him to talk to Dr. Wilson at NIH but he seemed to blow me off and said he'd talk to their lymphoma expert. Their lymphoma guy reviewed my records and agreed with Dr. Wilson that he doesn't think the lymphoma has returned or I would be sick by now and in the hospital versus walking around. They went ahead and scheduled the PET and CT anyway just to be sure. I get that and I know they need to be sure because that would certainly change my treatment plan.

Now I'm waiting for all the test results and trying to figure where I should go for treatment: MD Anderson or Hopkins. MD Anderson also thought that a haplo-identical (half match) would be the best option. They're going to re-test my brother just to be sure and I heard yesterday that they want to look at my four cousins too as there's a 1:8 chance that they could be a haplo-identical match. Once the insurance clears it, test kits will be mailed to everyone. I just have to think about which conditioning regiment is the best as both hospitals have different approaches for the pre-conditioning for the transplant. I need to determine which has the best success rate and which is the best for me (that's of course if I have a half-match in my family). If I don't have a half-match, then I need to keep looking for the 10/10 or 9/10. Too many things to consider, and the clock is ticking away on when to start the process.

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