My last CaringBridge Update Jun 29, 2018 (Titled "Killing Zombies")
The updates have been few and extremely far between and for that I apologize. My last update was back in November and at that point I was dealing with three small lung nodules that weren't diminishing in size after six rounds of a nasty chemotherapy called Folfox.
At that point we'd decided to radiate the three spots while taking a break from chemo. The thought was that we could zap the spots, scan again in three months and hopefully the three lesions would be gone and nothing new would show up. Those three months off chemo were amazing! I'd felt better than I've felt in years. We went to Boulder for Christmas. We went skiing in Jackson, WY and scored amazing conditions with some of my best friends and being out in those mountains with those people truly filled our hearts. I'd like to thank Todd Jones and TGR for bringing us up there to work on a film and have that experience again. Wilson is a true character of his namesake of the town Wilson (Lora and I named him after the town that we'd met in).
Eventually it was time to scan again and the reality is that my cancer is Stage 4 and floating around my system, so a targeted therapy like radiation wasn't going to take care of the larger problem. The scan revealed that the spots we'd radiated were stable, but a few new tumors had arrived. One in my clavicle, one on my adrenal glad and another one on the lung. It had become obvious that I'd needed to get back on chemo quickly to see if we could at least hit the pause button again.
In the meantime, my Radiologist suggested that it would be a good idea to do an MRI of my brain to make sure that nothing had spread. This seemed like an unnecessary scan seeing as the chances of my cancer passing the blood brain barrier are less than 3%. It came to everyone's surprise when the scan revealed five lesions on my brain. Instantly this news felt like the final nail in the coffin. I was done...cancel the chemo...let's drive the van down Baja and live out my last days. But apparently I seem to be riding on the first set wave of treatments that are being developed constantly. Turns out that five inoperable brain tumors that a few years ago would put you out to pasture are now quickly treated with Stereostatic Radiosurgery (AKA SRS or Cyberknife) I went in to Radiology one night for 30 minutes and my mad scientist of a Radiologist turned on his cancer killing disco lights and BOOM. A few massive head aches and some streaks of baldness across my dome and as of today those puppies aren't an issue!
Although the chemo seems to be continuing to hold everything stable, it's not really making a dent. The concern is that at some point my cancer will eventually mutate and cause that chemo to become ineffective. I could continue to stay on it and pause everything, but eventually the toxicity builds up and my quality of life starts to suffer. I mean, not by too much. I still have some amazing days while I'm on chemo!
While I've been balancing a quality-of-life during treatments homeostasis, Lora has been on a relentless hunt for something better and has tirelessly researched immunotherapy trials for months. She has on occasion caught even our specialty doctors off guard with her knowledge of tumor types, mutations and genetic jargon. Apparently her tenacity to not take no for an answer mixed with her determination might just find me a cure. This has resulted in us discovering a good looking immunotherapy trial.
The trial aims to use a combination of two drugs to enable my own immune system to recognize the tumors. To sum up the concept of immunotherapy with a movie analogy, tumors are kinda like a bad zombie flick. Cancer cells are basically dead cells that were never told that they're not suppose to be walking around eating brains and the healthy protagonists (White Blood Cells) don't know how to kill them. Chemo is like dropping a bomb on a crowd of zombies, but you'll definitely get a few healthy cells in the process. Immunotherapy would be the equivalent to arming every healthy person with samurai sword and unleashing them on an outnumbered crowd of zombies. You're basically attempting to take the brakes off your immune system and turn them into zombie killing machines. (ok, that analogy sounded super geeky and made me sound like I watch of lot of horror films, but hopefully it helped explain a few things)
So, on Monday I'll be heading in for a biopsy on a lung lesion and on Thursday I'll get my very first treatment with immunotherapy. This trial obviously comes with risks. I might have a reaction to it at first, it might not work at all, I might even see progression of my cancer. But the good news is that I'll only do one infusion a month and it'll be much less toxic than chemo. And it's a trial, so I get to do something in the name of scientific research and hopefully help in the process of finding a cure for these little ass zombies!
Huge thanks to everyone that donated to my Undy Run 5k! We raised close to $6k, I painted a ton of Thank You cards and I took first place in the "Survivor" category! (Being one of the younger people with colorectal cancer has its benefits).
At that point we'd decided to radiate the three spots while taking a break from chemo. The thought was that we could zap the spots, scan again in three months and hopefully the three lesions would be gone and nothing new would show up. Those three months off chemo were amazing! I'd felt better than I've felt in years. We went to Boulder for Christmas. We went skiing in Jackson, WY and scored amazing conditions with some of my best friends and being out in those mountains with those people truly filled our hearts. I'd like to thank Todd Jones and TGR for bringing us up there to work on a film and have that experience again. Wilson is a true character of his namesake of the town Wilson (Lora and I named him after the town that we'd met in).
Eventually it was time to scan again and the reality is that my cancer is Stage 4 and floating around my system, so a targeted therapy like radiation wasn't going to take care of the larger problem. The scan revealed that the spots we'd radiated were stable, but a few new tumors had arrived. One in my clavicle, one on my adrenal glad and another one on the lung. It had become obvious that I'd needed to get back on chemo quickly to see if we could at least hit the pause button again.
In the meantime, my Radiologist suggested that it would be a good idea to do an MRI of my brain to make sure that nothing had spread. This seemed like an unnecessary scan seeing as the chances of my cancer passing the blood brain barrier are less than 3%. It came to everyone's surprise when the scan revealed five lesions on my brain. Instantly this news felt like the final nail in the coffin. I was done...cancel the chemo...let's drive the van down Baja and live out my last days. But apparently I seem to be riding on the first set wave of treatments that are being developed constantly. Turns out that five inoperable brain tumors that a few years ago would put you out to pasture are now quickly treated with Stereostatic Radiosurgery (AKA SRS or Cyberknife) I went in to Radiology one night for 30 minutes and my mad scientist of a Radiologist turned on his cancer killing disco lights and BOOM. A few massive head aches and some streaks of baldness across my dome and as of today those puppies aren't an issue!
Although the chemo seems to be continuing to hold everything stable, it's not really making a dent. The concern is that at some point my cancer will eventually mutate and cause that chemo to become ineffective. I could continue to stay on it and pause everything, but eventually the toxicity builds up and my quality of life starts to suffer. I mean, not by too much. I still have some amazing days while I'm on chemo!
While I've been balancing a quality-of-life during treatments homeostasis, Lora has been on a relentless hunt for something better and has tirelessly researched immunotherapy trials for months. She has on occasion caught even our specialty doctors off guard with her knowledge of tumor types, mutations and genetic jargon. Apparently her tenacity to not take no for an answer mixed with her determination might just find me a cure. This has resulted in us discovering a good looking immunotherapy trial.
The trial aims to use a combination of two drugs to enable my own immune system to recognize the tumors. To sum up the concept of immunotherapy with a movie analogy, tumors are kinda like a bad zombie flick. Cancer cells are basically dead cells that were never told that they're not suppose to be walking around eating brains and the healthy protagonists (White Blood Cells) don't know how to kill them. Chemo is like dropping a bomb on a crowd of zombies, but you'll definitely get a few healthy cells in the process. Immunotherapy would be the equivalent to arming every healthy person with samurai sword and unleashing them on an outnumbered crowd of zombies. You're basically attempting to take the brakes off your immune system and turn them into zombie killing machines. (ok, that analogy sounded super geeky and made me sound like I watch of lot of horror films, but hopefully it helped explain a few things)
So, on Monday I'll be heading in for a biopsy on a lung lesion and on Thursday I'll get my very first treatment with immunotherapy. This trial obviously comes with risks. I might have a reaction to it at first, it might not work at all, I might even see progression of my cancer. But the good news is that I'll only do one infusion a month and it'll be much less toxic than chemo. And it's a trial, so I get to do something in the name of scientific research and hopefully help in the process of finding a cure for these little ass zombies!
Huge thanks to everyone that donated to my Undy Run 5k! We raised close to $6k, I painted a ton of Thank You cards and I took first place in the "Survivor" category! (Being one of the younger people with colorectal cancer has its benefits).
Have you tried fasting?
ReplyDeleteI've looked into it and tried to change my diet to more of a keto, low carb, mediterranean diet. Although fasting seems to work on mice, it's a lot to expect for someone dealing with bowel surgeries, cancer and chemotherapy to take on fasting as well.
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