This is a bit overdue as we have been between calls and on-line appointments with doctors, case managers and insurance. At this point, three weeks have fallen between knowing the result of the recent months of treatment and having any sort of next step forward. It has been a lot of waiting to hear who spoke to whom and What We Are Going to Do.
Plus, we definitely need time to process, to say the least.
Despite this, the family and I got away for a few days. It was a fun break, but more than the usual degree of tiresome. This was a pleasant and relaxing pause, if you don’t count all that weighs heavily on the mind. It was a blessing to have some exclusive family time. It was a sobering reminder that wherever I go, there I still am. I remain thankful that we could squeeze it in under these circumstances. It was a first opportunity to travel with less resiliency such as every few hours of don’tforgetyourmedicine and youguysgoaheadi’llstayhereandrest.
A post from a few months ago commented on the previous scan. It showed excellent progress in all areas, and was a great indication that the first line chemotherapy drugs were doing what we we hoped they would do. With plenty of ways to go, and that fact that I was not too run down from side effects, the plan was to stay the course to get as much mileage out of that protocol as possible. Where patients in similar situations receive and tolerate four to six cycle of this treatment, I completed a total of eight cycles in just over six months. Ten weeks had passed between the previous and most recent CT scans.
This scan showed news somewhere between the good and the bad. While the peripheral cancer sites continued to respond well, and are gone or further diminished, the primary site has shown a mild but definite increase. I have been reminded that the first-line chemo has served its purposes. The no-so-great part, I’m told, is typical. The mileage runs out. We attack from new angles. That could mean a new chemotherapy mix or starting a cutting-edge but still experimental clinical trial. Either option is reasonable, but there are no proven and established clinical pathways for my specific cell surface markers. Dr. Azad, the specialized oncologist at Johns Hopkins, says that we have good reason to think that the protocol in her study is the best next step forward. I -should- respond. I want to hear more from her and the team, but that’s all they’re able to give at the moment. And I believe them. I appreciate the straight far more than sugar coating or flimsy promises.
The clinical trail includes immunotherapy to stimulate the autoimmune system plus an epigenetic drug that targets specific cell surface markers. It requires a one month wash-out period from chemo. I’m the very last patient enrolled of 15 total at JH and 60 at the University of Southern California. Next week I will travel to Hopkins to begin pre-tests that will determine final eligibility to begin the study. If accepted, I’ll be wearing a path down route 83 before the end of this month.
Physically, I’m currently having zero nausea but the numb feet and ringing ears remain. Fatigue and flatness comes in waves. Mentally, I’m mostly well. Sometimes I honestly do not know what to think. Every night brings restless light sleep despite trying various meds. Every morning is a new reminder of the situation, a time to pray and with help from the Lord, get it somewhat together. The outcome of all this is definitely more than a matter of patience or toughness, grinding through side effects, getting by with (more than a little) help from family and friends. It’s not that “easy.” Despite what many of us like to think, there’s much in life that is truly NOT a matter of effort or anything we can control. But this situation really makes it clear; presses it upon you.
Soli Deo gloria.
My strength and energy and ability have continued to slowly improve. I have deadlifted 315 for a few sets of 5 reps without really pushing it (if that means anything to you). During a recent on-line conversation, I had a question for Dr. Azad, renowned specialist on the forefront of rare cancer research and personalized drug development.
“So I continue to receive and simply come across various advice. At this point, between treatments, I wanted to double check if there is anything that I should be doing or avoiding, nutritionally or otherwise?”
“Keep trying to build back strength while you’re not nauseous. Get a lot of protein. But calories are most important for patients in your situation. Seriously, focus on the gains.”
Okay. That may have been a bit of a paraphrase of the docs actual words ; ). But truly, this is the gist of her message. So with prayer and a medical/research team and the support from so many of you, we’ll move ahead in this time somewhere between treatments. I will continue to focus on the daily work ahead of me, and where and when I can, also the gains.