Only Uphill From Here

Today was the day I just made a decision that could define the rest of my life. This morning I woke up to a phone call from NIH, wanting to know if I wanted to proceed with the clinical trial or not. I told them when I last spoke to my doctor a week ago, he told me to continue with the screening for the clinical trial while he spoke with my transplant doctor to see if he was still on board with this last chance shot of the ICE chemo. I finished screening on Friday with a biopsy to confirm that I'm still dealing with the same strain of cancer and not a hybrid. Now that the screening passed, they were set to start me on the clinical trial by admitting me overnight to get a catheter put in...all they needed was my consent to move forward. Without hearing back from my oncologist, the pressure was high. Doubts were running through my mind at the last minute.

During the phone call, I was told that there is no future date set for the clinical trial. They are looking at the end of January as a potential availability...but if I proceed with the chemo, I'll most likely miss that...and then who knows how long of a wait it will be until it's available again. This means...if I choose to do chemo and it doesn't work, then I'm stuck out of options entirely. On the other hand, going into this trial is very very risky and is most likely not to work at all...whereas statistically speaking the chemo stands a better chance....although my transplant doctor might debate me on that since I didn't initially respond to most of the other treatments I've tried. The odds have never been in my favor.

Thankfully NIH was able to get me in touch with my oncologist at the last minute, and he basically told me that whichever decision I make it's not a wrong one...we are in such a grey area that no matter which option I pick, it will have risks. After conferring with him, I told him that I just had a good feeling about this chemo...and if it gives me one more shot to a transplant, then I want to take it. So he told me he would let NIH know of my decision to put the clinical trial on hold for now (again), and he would contact the hospital to see when I could be admitted.

WOAH WOAH WOAH...Hold up....admitted???

Apparently, that little detail escaped my oncologist when he last spoke with me about the ICE chemo.

I knew it was a lot harder and more toxic, but I had no idea it was done, inpatient. He then told me that the treatment can cause very bad nausea and the first day of the treatment is a 24 hour IV line of the first drug. Then I have two or three more days of chemo in the hospital before I'm discharged. I'll have 2 weeks to recover before I have to report once again to the hospital. This was a bit of a shock considering how close it was to the holidays, and the idea of spending Christmas day in a hospital bed starting this chemo wasn't ideal. However, in a couple hours, I was able to shake it off...I thought to myself, if this has the potential to provide a miracle, what better gift could I ask for Christmas?

I have this week to prepare myself and I go to the hospital next week. I honestly just hope that I respond well to this chemo. I don't care about losing what is left of my hair...I also don't care about the wretched nausea. As long as I stay breathing through it and survive the next three months of this treatment with no progression of cancer, I'll be happy...even more so if I can get into remission again. But like I said, I have a good feeling about this chemo. The people who did the biopsy said that the progression of cancer was very minimal during these last 2 months...so much so that they had to go deep into my chest wall near my heart to get a very small tumor to biopsy. Hopefully this means it won't take long for the day of remission to come.