Month: August 2020

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.

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.