I now have 4 aligned oncologists all in agreement that I’m in complete remission. It’s not clear how this happened. There are several competing theories that I won’t go into here for purposes of brevity. I think the most likely explanation is that first line was effective in killing the scary stuff. Then, by some mechanism, my immune system got a boost and pushed follicular cells into remission (possibly by recognizing, and subsequently weaponizing against proteins that were released in the massacre – it’s all speculative). I wish doctors were willing/able to dig into the post-treatment details to really understand what happened but retrospectives like this seem to be a casualty of warfare.
There is loose agreement on the monitoring schedule. At this point it stands at 6 months for the next scan. UCSF suggested 3 months. Stanford suggested 3-6. Dana-Farber suggested 12 months or whenever I feel symptoms. I pushed back on UCSF suggesting that taken together the combination the false positive rates, radiation exposure, and general anxiety of waiting for these scans were all good reasons to hold off longer, 6-12 months. No issues as there are no hard/fast rules for my situation! Also, Stanford suggested that blood tests are coming online soon, at least for dlbcl (the scary type) which makes me want to wait as long as I possibly can in hopes of that technology coming online.
To pull on that thread a moment, through my network I got connected with a company called Natera (thanks Alex!) that have consumer blood cancer detection tests in development. While it’s still for research use only and only validated for a handful of solid tumor types I jumped on a call with them the other day. It’s obvious they are still in early days. They are currently running a trial to validate other cancer types. I’m leaning towards joining this trial because in part because it’s just a blood draw so no big deal for me (assuming there’s enough biopsy tissue to share). More importantly I would do it to get them get more data to support follicular lymphoma detection. Maybe it’s a small way to give back – even if the data is too noisy/inaccurate to use for my own clinical diagnostics (that is, I’ll still need to get the PET/CT scans for any diagnostic decisions).
In a nutshell the way it works is they match up tumor DNA (taken from the biopsy tissue) and match it to DNA that’s ostensibly shed from the tumor and that circulates in the blood. They have algorithms to look at sensitivity levels and mutations to draw conclusions re: progression. This would be particularly useful for Follicular Lymphoma as the nature of this disease is that it waxes and wanes. And a blood test would obviate the issues mentioned above with scans and would (in theory) have a higher sensitivity, meaning they can see circulation of tumor DNA in the blood months faster than a scan would pick it up.
I’m constantly thinking and reminded about how much access I have. I do my part as a patient and advocating for myself, but to be perfectly honest if I didn’t have access to the doctors and network that I do then it’s clear my advocacy would have been a much lower-leverage activity. I would almost definitely be in a much worse position.
It’s so easy to lose sight of the fact that so much of our circumstance is dumb luck: shit fortune for getting cancer; good fortune to have resources to fight it well; dumb luck of the PET/CT coming back clean. I have no idea how can we level the treatment field but it seems an important activity for us (humans) to consider with an estimated 2-3 billion more humans coming into being within then next 50 years?
- What if I couldn’t afford to pay out of pocket for 3 separate opinions?
- What if I didn’t have the time to dig into all this research (I barely knew what lymphoma was a few months ago!) to nudge the direction of treatment?
- What if I didn’t know the right people to talk to? Or have the network to connect with the best oncologists at the top hospitals in the bay area? Three of the four oncologists in my panel came through my connections.
- What if I didn’t have such supportive colleagues supporting me through my journey?
- What if my wife Michelle, kids, and broader community weren’t so amazing?
Decompression (in pause)
I’m exhausted. My tank feels depleted. My back still hurts. I’m building back up slowly but I’m letting my body tell me when I’m ready to move ahead with life. I’m in pause.
The top question I’ve gotten over the past week is some variant of: “…are you feeling elated”. Actually, no.
Viscerally, it feels like I’ve run a marathon. Metaphorically, it feels like I was thrown off of what I took as a sturdy ship into the roiling nighttime ocean. I was tossed around in freezing water of uncertainty for months. Then – miracle! – I’m heaved onto the shores of some anonymous island. The constant motion of bobbing on waves has given way to the stillness of land. Instead I feel like I can barely move as I think: what the hell just happened? where am I? Is this stable? what’s next?
I’m picking up the pieces back up and I’m trying to be methodical about how I do that – slow and steady. If you’ve reached out and I haven’t gotten back to you please don’t take it personally!
I’ve been spending time with the kids. For example hanging with Lua in the backyard one afternoon. We just sat in the bench under a large spruce tree. It was heaven. Seriously, for the few minutes she sat kind of still, her tiny body in my arms, I was flooded with gratitude for just being and not doing anything. I’m wired to do and it’s nice to NOT do for a bit, to just be and let things sink in. It’s happening slowly and I’m not rushing anything.
I’ve never been to burning man but all my friends that do go spend a week in ‘decompression’. Observant Jews have been resting on the Sabbath day for a long time. Not sure the science behind 1/7, but 14% seems reasonable. Modern society has implemented a version called screen-free Saturday; same thing, new marketing. In all cases there is a period of intensity followed by pause/reflection. I’m sure there’s some good studies of which I’m unaware suggesting the benefit of decompression but I haven’t researched it.
For now it’s clear that my mind is screaming at me to rest and recover as I take in the new vista.