I started back on chemotherapy a few weeks back. Did the pills. 5 days on, 2 days off, 5 days on, 16 days off. Other than feeling a bit more tired, did not seem so bad. I did my best to train.
While the chemo did not really slow me done, the kidney stone flaring up again did. For two weeks it was going back and forth. It took me a couple of days to figure out. At first I thought it was the pulled muscle or the tumor in my back acting up. Maybe residual issues from the radiation.
It started with the discomfort trying to sleep. Enough to not sleep. FIgured a pinched nerve. Sciatica. Something. Then it escalated. And I realized the other symptoms I had forgotten about. As I was crawling along the ground or pacing, anything to try to find a position of comfort, it hit me. The stone. It has never left. Causes pain, then retreats.
This went on for two weeks. Up and down on the pain scale. I did not want to go to the hospital out of Covid concerns. Probably not much could be done anyway other than painkillers.
Was doubtful they would do a procedure at this point and I would not want to anyway at this time unless there was no other choice. I had two really bad days, about a week a par, where I doubled the painkillers and took sleeping pills. Pacing back and forth, trying not to get sick, waiting for the edge of pain to abate. The second night I finally fell asleep. The next morning I woke up. All pain gone. Even the minor back pain that is constant.
Despite it all, managed 100 miles on the bike, 25 miles running and almost 3 miles tethered swimming (kind of low ball estimate ;))
I got a call from Yale University. They were semi-opening up. And I was able to get up to see them. It was amazing. About an hour and a half each way. It was a nice day out, clear blue skies. I got to Yale and was excited. Actually seeing people. Very rare the last few months. The ordered my tumor samples and will test them to see if I qualify for one trial they have open right now. About 30% of people have what they are looking for in the genetic make-up of tumors. If I got it, good to go. It sounds hopeful. The drug is used with brain tumors and some other cancers with good results - 70%-80% have tumors stop growing and/or shrink. Preliminary research indicates it may work on my cancer.
We also discussed the Lonfurf (my new chemo) and my blood work. I had tests a week before and my blood work went slightly bad. Still some head room before concern of infection and the rest. The doctor told me that bad blood work (i.e., white blood cell drop and other things which can lead to getting sick easier) often correlates with Lonsurf being more effective. Just like immunotherapy often almost killing patients has the best outcome. I joked I should hope things get worse and I get infections. He laughed and said the drops occur over time, so there is still time for me to get worse. Better. However you want to phrase it.
It hit me as I left and was driving home – it was the longest I had been outside since March. Even on my cheat go-outside run days, or hospital visits, I had not been out for more than two hours. A couple of times. At most. I began to understand why people where just going for drives when they had a chance during all of this.
I had follow-up blood work the day after I visited Yale. In a be careful what you wish for moment, my blood work got a lot worse. Like worse than when the only time I ever needed a booster shot. LIke bad enough that I cannot start my next cycle of chemo tomorrow bad. Like I should be wearing a mask, carrying hand sanitizer, avoiding people and all the rest bad, even if there was no pandemic.
The plan is to test again next week and see if things bounce back a bit then try again. One of the things is I do need to dial down training a bit, less stress on the body. I will still work out, but the longer bike and runs will go on the side for the moment.
I have a weird combination of mutations and mets. Discussed it with the doctor at Yale while I was there. It was something I knew already. But as he pointed out, most people with my cancer 5-1/2 years out are nowhere near the condition that I am. That my body has compensated so far with the training. That I am a unicorn. The slowest unicorn on the block by far, but still...
It is getting tougher to get going to train, but I am usually able to drag myself up and out….
#iTRI4aCure
