Protocol 4 – The whole thing

Embarking on Protocol #4: A Journey Through Uncharted Waters

Admittedly, I’ve been dragging my feet when penning this update. Finding the right moment seemed elusive between bouts of feeling swamped or just plain exhausted and the need for a breather from the relentless daily grind of health management. This protocol has been a head-scratcher as well. So it’s been hard to find the words.

DON Dose #1: On the brink of my inaugural DON day under protocol #4, I found myself at a crossroads – again trying to decide the ideal dose. As you may remember, protocol #1 was about finding my personal tolerance for DON. And I ended up being around the 1.1mg/kg mark. But this time, my goal was to obliterate the cancer that’s become an unwelcome lodger in my life.

Slow and steady wasn’t cutting it—I was weary from the constant battle, from living in a state where cancer dictates every aspect of my existence, far beyond the initial shock of diagnosis. From obsessing over every health metric to wrestling with the logistics of treatment access and affordability, the journey has been nothing short of Herculean. This is how it will be for others trying this as well. Hopefully, it will be less confusing, but it will still be an uphill battle with systems in place that would rather see you die than break the mould.

Before this protocol, 1.3mg/kg was my peak, a dose that left me reeling with side effects. Scaling back to 1.2mg/kg offered no respite. It was a hard-learned lesson about the cumulative toll on my body. So, with two months’ reprieve from DON, I reasoned that revisiting 1.2mg/kg might be manageable. Yet, in a whirlwind of preparation, I misjudged the dosage. Only en route to my Hyperbaric Oxygen Therapy (HBOT) did the realization hit: I had inadvertently taken a 1.3mg/kg dose with me, and I had no way to remeasure properly. Faced with the dilemma of delaying treatment or proceeding, I chose the latter, weighing the pros and cons carefully and opting for the miscalculated 1.3mg/kg, which ended up being a 75mg total dose.

I was in the HBOT tank for 2.5 hours and, shockingly, had no effects! My stomach recognized DON’s familiar and horrible tastes, but I had no side effects, which you likely remember is the only way I know how to dose correctly. You want to get sick…but not so ill you can’t tolerate it. I was not sick and now panicked. My immediate thought was – I have been ripped off! A short time later, cool heads prevailed, and I considered that I might just be healthy and able to tolerate a high dose to start, but as the cumulative damage to my GI tract ensues, I will have to go lower and lower.

But to be safe, I checked with my supplier, and apparently, it was from the duplicate lots as per previous DON protocols.

DON dose #2 – I stayed at 1.3mg/kg for the second dose, unsure if the DON was legitimate. I once again had no side effects! I was mad, confused, sad, mad and confused some more. I don’t want to believe that people trying to help would be carried away with greed, but money makes people do dumb things. And maybe I am just rock star healthy, and I can stomach glutamine deprivation better than before?! It’s already paid for, and you can’t just ask for a refund on these things. I might as well have kept going.

DON dose #3 – I increased it to 1.4mg/kg for the third dose but took the psyllium husk. This time and again, I had no side effects. So, I called someone else I know who is doing this protocol and has DON from what we think is the same lot. They had only taken a dose of this lot but had all the side effects from before. So, they are having side effects, but I am not. So maybe it’s not fake DON, but perhaps I am crazy healthy?

DON dose #4 – Fourth dose, same as the 3rd dose but no psyllium husk, but that made no difference. No side effects again. I’m freaking out that I am wasting time and wasted money.

DON dose #5 – I took all I had left, 1.5mg/kg. I knew I wouldn’t have enough for a total of 6 doses now since all the others had been higher than I had initially planned, but I wanted to push it. At some point, my fantastic body ought to be feeling the effects of this, right?!! They say take as much as you can tolerate, and without clinical trials, knowing the best dosing is impossible. I’ve had success with past protocols at 1.1, but I have no clue if this batch of DON is the same purity and what effect it will have. 

DON dose #6 –I am out of DON for the 6th dose. The supply fell dry again…maybe that’s a good thing since I want to believe that the last lot was adequate, but the lack of side effects worried me.

It was deeply disappointing not to complete all six courses, not to mention all the worry. However, perhaps what I truly need right now is a break. And I am taking one, which is one of the reasons I wanted to go hard on this 4^th protocol. Late in December, I decided to take a memorable trip to Europe with my daughters. This decision wasn’t made lightly; it fulfills a heartfelt promise I gave them when I first received my diagnosis.

I understand this might prompt questions, especially regarding the financial support I’ve graciously received from contributors. It’s crucial for me to clarify that this trip is being financed by cashing out my pension earned over the years working at Island Health, not by reallocating any donated funds. This journey is about finding a balance between combating cancer and maximizing quality time with my loved ones. Honestly, the funds earmarked for my cancer were depleted long ago, which was somewhat anticipated as I initially thought I would only undergo three protocols. Consequently, my credit card is maxed out, and I’m tapping into my future income to allow time for some precious memories with the kids.

Financially, this decision has been difficult. The cost of treatments, daily health requirements, and the exorbitant cost of living here show no signs of abating. Despite these challenges, fulfilling the promise to my daughters has to be right up there with getting healthy. This trip is not an attempt to forget the ongoing battle but to cherish our time together, creating moments of joy amidst the struggle.

Upon our return, I’ll be ready to resume treatment with a renewed perspective, continuing the fight. This trip is about more than escaping reality (which I very much look forward to); it’s about reinforcing the importance of making every moment count. When I come back, I’ll undergo a PET scan to assess my condition. My last scans are from February 7th, provided by Island Health—a CT and a Bone Scan. They were once again frustratingly vague and useless for my purposes. Essentially indicating that everything is fine. For those seeking details, welcome to the frustrating ambiguity of my world; they seldom provide clarity. I’ll post them anyway. Everything is good. It looks like there is some remission in the bones.

Interestingly, the remission appears to have slowed compared to the November results, which aligns with the two months off DON, perhaps??!