Much has taken place since the previous update.
At that point we were in between trying to get in some end of summer family activities, and tests and procedures to determine whether or not I would qualify to begin a clinical trial of immunotherapy at Johns Hopkins. This included a formal interview and brief exam, an updated CT scan, further bloodwork, biopsy, and a few other less invasive tests. Amy and I were so grateful and excited that I did qualify! That lasted for 12 hours or so. There was one important hang-up.
During the interview I did report the general pain through my back and hips and upper legs that was always keeping me from resting. It was never a sharp pain, fairly equal on both sides. The issue did not improve or worsen when trying different movements or resting positions, and did not at all seem to depend on how active or inactive I had been the previous day. Standard pain meds offered little relief. I thought these long days and longer nights may be the process of my red and white blood cells significantly rejuvenating, or the small nerve endings returning after the previous chemo protocol (my feet have been numb since February).
The doctor called the next day to say what I thought was going on but did not want to acknowledge. [Paraphrase] “Your CT scan from yesterday showed some growth of the central tumor sites, which is somewhat to be expected since you have been nearly a month off chemo. But what you are describing in terms of pain is the definition of bone cancer pain. These areas on the CT scan that previously looked stable still do appear the same, so they haven’t yet progressed to a large extent. But the pain is very likely to worsen, and I really don’t want that to get out of hand.”
Since immunotherapy typically takes ~4 weeks to “kick in” and tumor sites generally will show some growth before any recession in the right direction, the doctor recommended to put that on hold in favor of starting a second-line chemotherapy protocol. Chemo is less of a long-term solution but if it works, the response comes far faster.
My gut reaction to her recommendation was frustration. I wanted to take back what I said about the pain and tell her “It’s really not that bad, I’m good to proceed as planned.” But then it occurred to me that she spends her life dealing with such things and probably knows better. Nearly a week of time between that conversation and starting the new chemo protocol absolutely proved it. The pain worsened, sometimes drastically, usually any time that I attempted to rest. Heavy hitter pain meds were called in. I didn’t like the whole idea of that, so I took them sparingly, in response to the pain.
By the time this type of pain is experienced, it’s too late. I was told that you need to take them consistently in order to stay ahead of it. So I did, as prescribed. It helped to some extent. The first day of chemo rolled in and we were hoping and praying that my body would respond to this drug combo. I questioned how I would tolerate sitting in the chair for a few hours without squirming and generally being miserable.
The response was drastic and fairly immediate, praise God! I went home and slept peacefully for the first time in close to a month. I rested and actually moved very little, like back in February. I’m not sure if the degree of fatigue and brain fog was a typical side effect from this chemo cocktail (I’ve heard and read that it is), if it is the fallout from not having slept well for so long, from not properly tapering off the heavier painkillers, or (likely) some combination of all these factors. But I can absolutely say that I had felt far less (mentally) sharp than ever. It was like being a different person. I now feel like day-by-day, my previous brain is being uncovered, but things seem fragile and shaky. I was somewhat afraid to even sit here to try writing anything.
The previous post commented on looking forward to some gains while being off chemo, and a new phase of this journey. This is certainly not what I had in mind. I’ve lost some weight and strength and endurance (reverse gainz ; )). I again feel stiff from sitting and such lack of activity. Sometimes I simply feel bored but absolutely lack physical and mental endurance or desire to do much. Even reading is an effort and so I’ll half watch the news or random ball games to serve as a distraction. Please do not feel bad if I don’t feel like talking or social media type responding much at this time.
Sometimes in my mind, all this is a direct indicator of things headed downhill, with constant discomfort and no pathway out of it. Pain and fatigue make cowards of us all. In reality, this setback was just a hurdle that popped up on the road to some further recovery. And I’ve lept plenty of those in my life, including every “Plyo Friday” for the past 15 years.
Even as I type this, I have no pain and I’m coming off a least a few hours of decent sleep. Amy and I have been personally advised by more than a few cancer survivors as well as others currently in the trenches, that we should expect this. Depending on how I respond to the chemo, we will revisit the immunotherapy trial (or one like it) after a few cycles. As I feel physically better, and the mental haze gradually lifts, I see the progress and hope.
Thank you for the continued prayers and support and time to read this. It truly is meaningful, even if we’re not responding much at the moment.