Chemotherapy stuff

It's been a while since I've posted so just as a quick catch up:

1. Started on Revlamid 25 mg and Dexamethasome 40 mg in June 2012.  That brought my numbers down but the side effects from the steriods and Rev were just too much.  I was sick all the time and miserable with constant sweating, my face all puffed up, unable to see my ankle bones, headaches and real out of body experiences.  Then the Rev stopped working and my numbers started going back up again.
2. Stopped Revlamid and started on Velcade and dex but only 20 mg in November 2012.  Velcade is also a pretty miserable drug.  The nausea was horrible until I learned to control it and the injection sites left huge red sores that eventually turned purple. Otherwise, besides the headaches continuing (they did a brain scan which turned out normal) and a funny taste in my mouth all the time, it wasn't as bad as the Revlamid.  After a while I just couldn't take the steriods anymore so I reduced down to 5 mg and then stopped.  I will never take them again!!! 
3. In November 2012 I stopped over to the transplant department at Moffitt.  They went over all the details of a bone marrow transplant (BMT) and said that I was a good candidate for one.  Multiple Myeloma is not curable but it is treatable and BMT is one of the treatments!  They described myeloma as a lawn covered with weeds.  The Chemo drugs essentially mow down the weeds (ie, cancer cells) but the cancer keeps growing because of the roots.  The BMT will essentially apply pesticides to my "lawn" and kill off most of the weeds.  Eventually, the weeds will grow back.  So, because my daughter is young and I'm not ready to die, I said I would procede to BMT.
4. Three days of intensive testing for my BMT was scheduled for this week. They want to make sure you are totally healthy, or at least that you are treated for whatever shows up. There were 20 vials of blood, radioactive dye in my blood, pulmonary tests, xrays of my entire body and on and on.  I had a little meltdown on Tuesday and refused to do the rest of the tests but they just rescheduled them for the next day LOL.  Guess that's happened before.  The thing that I was worried about the most was the bone marrow biopsy. Last time I had the biopsy I was in a lot of pain. This time the pain is minimal. Mary Gale says they probably hit a nerve last time.
5. One thing that's been bothering me a lot has been my feet! It's a result of the Velcade but I'm developing neuropathy. It's hard to explain how it feels but I generally feel like my feet are made of cardboard or sandpaper. The skin on my feet is peeling off in little strips and they catch on the rug, dry up and hang on, or rip off unexpectedly -- very painful! I live in sox and lotion. My sister Jennifer said to use coconut butter so I'm going to check for that.

My next decision is whether to participate in the clinical trial from my transplant. Clinical trials are important because they help doctors treat people in the future. In this trial they want to blast me with two shots of melphalan (rather than just one) and a shot of Velcade (rather than none) and then for the next year I will have the Velcade once a week for 4 weeks and then 4 weeks off. So here's the problem. The point of having the transplant is so I can be off the chemotherapy, which I don't tolerate well. Most of the people I've talked with who have had a BMT do not have to be on follow up chemo at all. The clinical trial would have me on chemo for at least a year. The point is to keep my myeloma cells in remission but there is no guarantee. Nobody knows anything about how my body will react after the transplant and I have to decide before the transplant. It's complicated. I don't know how to decide.