Here is my latest update on my treatment in Salt Lake
I have been feeling really good about my entire situation. Though I basically live in a cave and don't get out much I feel very loved and supported. I have to be honest it really feels like things are going great for me. This will sound crazy to most of you but I am having a blast right now. I don't get a lot of time out but when I do I have had a lot of fun and enjoy it so much.
I have had friends visit from Portland, Moab and New Hampshire. I have been to Soccer Games and baseball games. My new highlight is going to the Coffee Garden on 9th and 9th in the afternoon and watching the crazy outfits people are wearing these days. (does that make me sound old?) I only get out every other day and usually only for a couple of hours because I get tired easily.
The last round of ICE started on April 20. This went quickly and easily. No issues at all. The next day I had the 3 Chemo's first the Etoposide, then the Carboplatin and finally the backpack with the Ifosfamide. The place in the hospital that I get the backpack is called "infusion." They have been far from impressive to me so far. I have had to wait for the backpack both times and they just don't seem to know what is going on.
I got my backpack around 1pm and headed home. I received a phone call around 5:30pm from the hospital that they had forgot to put some of the drugs in my bag and need me to bring the bag back and wait for them to fix the problem. I'm not usually a very angry person but I did get rather pissed about this. I told them to come pick up the bag themselves, fix it, and bring it back in not so polite terms(which is very much not how I do things.) They did. I ended up getting the backpack back around 8:30. this messed with the entire 24 hour thing so they basically had to speed up the input.
The last day I got the final installment and again had to wait for infusion to get their shit together. My friend Dave took me home and we hung out for a while. He was monitoring me to see how I was compared to my crazy night the last time. This went well. Lots of bathroom breaks through out the evening I think I counted 15. But I was able to eat and drink.
On Saturday I felt good, not great. I was able to eat breakfast and read the paper. The biggest shock to the system was that my hair started to fall out. I had a friend come over and buzz off the rest of my hair. It's really not as bad as thought it was going to be.
As a whole the weekend went well. I ate regularly and drank a lot. The experience was very similar to my earlier chemo's with each day better than the last.
Monday I was probably the roughest day of the past two weeks. I could not get out of bed almost all day. It was like a weight was on me and I just laid there. I pretty much slept the whole day and night and felt better on Tuesday. Each day is a new adventure.
My schedule for the future looks to be determined tomorrow. I get my PET and CT scan then. This will decide the next move. If the scan is clear then I start the bone marrow harvest which takes 10-14 days which does not send me hospital for 2 weeks. If it is not clear the answers are a little fuzzy. I may do another round of ICE or start bone marrow any way. Depends on what the drs from BMT and dr. Prystas decided is the best course. This most likely will lead to me being in the hospital in 4 weeks or so.
I will send out a short one tomorrow or Tuesday to give the update on PET/CT scan. Thank you everyone for all your support. Arlo