Friday, November 16, 2012

Day 153 - nothing exciting here

Today was spent napping, walking, eating salmon fresh from cape cod, catching up on journals and doing a little grocery shopping.

I am trying simultaneously to rebuild the muscle I lost during my fever admissions and to recover from my two days of NHHPCO. It is a good thing I have a comfortable couch is all I have to say. Tommie loaned me some little powder puff weights and I fling them around for three reps and then it's time to give that poor muscle a break. I actually took tylenol for sore muscles rather than fever for the first time in ages.

So, you might wonder what my overall picture looks like. It's clear as mud is the problem. I'll tell you what I understand. I might actually be done with treatments. It's not clear if there is one more thing Dr. Hill may offer me or if I'm really done. When he was at a conference recently, he asked everyone with lots of experience whose opinion he really respected what they would do with a patient like me. They all felt it was a tough problem, but that they would do exactly the treatment I have had and then stop. They said they'd check the marrow registry to make sure there were some options in case the patient needed a transplant down the road. I'm not sure what they would do for a patient without marrow matches (hopefully I'll have some), but for some one with options, they'd stop.

There is one study out there with results we don't know. It is essentially comparing people who have had my treatment (3 chemos) with people who have had two chemos plus an auto transplant. If the auto transplant people have a big decrease in their rate of recurrence, it would probably be worth thinking about doing one for me even though they got two chemos plus auto and I would be getting three chemos plus auto. We are meeting with Dr Hill on Nov 28 to sort it out and make our definitive decision. Either way, I have to do the same thing now, try to rebuild muscle and grow red blood cells. It would certainly be exciting to be done, but on the other hand, I don't want to leave anything that could decrease my chance of recurrence undone. 

So, as we head into Thanksgiving week, I have plenty to be thankful for and lots of hopes for the future. My needs have become so simple mostly; I am hoping for a good night's sleep for tonight yet again. You, I bet, are getting tired of that wish because you are way more interesting than me. What might you like most? a good cup of coffee? a nice conversation? an exciting weekend? Tonight, I am going to ask you to wish for yourself. Wish wisely, because you only get one per night.

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