Protocol 7 – A Bit of a Rollercoaster

I’ve been avoiding this post because it’s a bit sad and confusing, and honestly, I’ve been all over the place emotionally. One day, I’m happy and productive; the next, I feel pretty down, draining all my energy. A lot has happened since my oncologist recommended chemo at the end of August. He made the recommendation after my second set of scans showed progression—not a huge amount, but enough to know I was staring down a ticking time bomb. It wasn’t the progression itself that got to me; it was the burnout. I was exhausted by the end of my last protocol and badly needed a break. Suddenly, I faced a new hurdle and an even more dire situation. I was so close to figuring out the SubQ DON application, which was motivating, but with more progression, I didn’t think a break was a good idea—even though I could hardly bear the thought of another protocol.

I knew I hadn’t done my last two protocols perfectly, so I had two options: give up and start chemo or give it one last shot in September. The fatigue weighed heavily, and I was stuck wondering how to lower my glucose—a battle I’d been fighting for a year without getting it quite right. But I also had this opportunity to use my disease, knowledge, and slight crazy streak to perfect things and maybe prove this out without the confusion of being on two treatments.

The only problem (other than total exhaustion) was that if I gave September my all, there’d be no way to measure the results until my following scan in November. My only marker was my CA153 blood test, which is notoriously unreliable. If it went up, it would most likely mean cancer growth—though in rare cases, it could signal dramatic cell death. So it’s a bit of a coin toss. I’m pretty sure that’s what happened back in January 2024 when, a month after my tumour disappeared, my CA153 went up. I ignored my oncologist’s recommendation and gave September everything I had, putting chemo off until October. I even went down to single-ingredient meals 4 times a day, every day, to ensure I didn’t accidentally consume anything that might mess up my glucose. There is nothing you can eat that often and that much that you don’t get sick of. I had days where I managed to get down to 3.2–3.6 mmol and stay there even after meals, but I never figured out why it would sometimes pop back up to 4.4 mmol, seemingly by magic, and then I couldn’t figure out how to get it back down. In September, my glucose averaged 4.3mmol, which is where I was most of the time. I didn’t have big swings that only averaged out to 4.3; it was that I mostly just sat there. Occasionally, I could get it low, but I never did figure out what food, action, or lack of action dropped it, and even if I did get it low, I would wake up, and it would be back up to 4.3mmol, and I would be once again mystified at how to lower it again. 300-calorie meals that were 4:1 consistently spaced out at 0900, 1200, 1500 and 1800 just didn’t do it. I could keep a straight line on my continuous glucose monitor, but it rarely read less than 4.3 mmol.

I did nine doses of DON in September—5 were oral doses in enteric capsules, and 4 were SubQ injections. (I’ll save those details for YouTube, or this post will continue forever.)

By the end of September, I was hoping to see a slight decrease in my CA153 because that was the only marker I had to give me the confidence to push off chemo for another month and stick with KMT. Unfortunately, the CA153 went up. Maybe it was growth; perhaps it was dramatic cell death. Who knows? There’s no way to tell without a scan, so I fell into a bit of a funk. Who knows if all that effort was worth it?

I took a chance, knowing this might happen, but I felt pretty crushed by the end of September. I had been confident in my decision to ignore my oncologist’s advice for that month for the sake of science, but seeing that CA153 result hit hard. I knew I couldn’t do it again in October. I just didn’t have the energy, and I was scared my cancer would spread to another organ. At that point, I pretty much knew I was going to start the chemo, so I broke down. I threw the strict diet out the window and indulged—candy, alcohol, all the things I’d denied myself. It felt great in some ways, but after a week, I started thinking, “Oh my god, what if I’m undoing all my hard work in September?”

In the middle of this, because apparently, I needed more on my plate, I decided to buy some second-hand weights to get serious about building back the muscle I’ve lost over the last year. Of course, I managed to pull a muscle in my back just loading them into the truck! As if I needed to prove to myself that I was weak. Now, I’ve been dealing with back pain ever since. For a few days, I was convinced it was a pulled muscle. Then I worried it was something more sinister—a kidney infection, maybe? I went back and forth for a week, trying to figure it out, kind of like my back-and-forth with the chemo decision. Deep down, I knew I would probably take it, but I wasn’t quite ready. I needed to ask my oncologist a few more questions to see if I could salvage any part of my plan.

Thankfully, I got a quick five-minute call from him to discuss chemo. I asked for a lower dose—750 mg/m² instead of the standard 1000 mg/m²—and a plan that would allow me to take breaks. The research suggested that taking breaks didn’t affect overall survival, so why not make it easier on myself? I started chemo on October 17^th, and once I feel like I am in a safe place to take a break, I will. And if I feel secure enough, I can stop the chemo for a long break and keep the KMT going to pick up the whole “I need to do this without SOC” obsession I now have.

Meanwhile, my back pain has been getting worse. It feels very muscle-like, especially when I bend forward, so I sit, stand, and sleep awkwardly. I’m on ibuprofen around the clock, and I even had to take some hydromorphone for the first time since June 2023. Of course, my mind keeps wandering to worst-case scenarios—liver metastasis, more bone involvement, you name it. But realistically, it’s probably just from loading those weights into the truck which my arms outreached. My scans in November should clarify things.

I’ve also noticed some pain around my lower ribs, both left and right, in the front, which is a bit of a mystery. But this tends to happen whenever I have any kind of ache or pain. I can stub my toe and suddenly find myself running through my known tumour locations, medication side effects, diet, and sleep schedule, looking for correlations. The ribs have come up in my scans before, so maybe there’s something there. But honestly, it could just be a result of my recent high-inflammatory diet—black licorice and Dino Sour beer have often been on the menu. I fed the cancer for a couple of weeks, so who knows? I’ll have to wait until November to see what’s really going on.

In the meantime, I’m focusing on getting through each day and doing what I can. I’ll keep you all updated when I know more. And yes, I know I’ve mentioned tube feeding and YouTube—these last few months have pushed me towards decisions on both. Tube feeding will happen in the next week or two, and YouTube will start ASAP.