Part 8: The results

This is part 8 of my blog series. If you haven’t read the previous parts in the series, it is best to start with part one, Daddy’s dying.

While I was in Tampa, FL in December it was time for my MRI. We were staying at a place right on the beach about 40 minutes from Moffitt Cancer Center, and so, with some trepedation, I returned to the same campus I had spent so much time at years before. Funny story, I left the AirBnB at 6:00am and sat down outside Moffitt waiting for their doors to open. I crossed my legs and realized I still had my slippers on. I work full-time remotely and always wear my slippers and managed to walk out of the house and drive for 40 minutes and never realized I forgot to put on shoes! Well, at least I had pants on.

I went throught the same routine of gowning up, laying down and sitting through 40 minutes of MRI procedure. Then I went upstairs to hear the results from my Oncologist. This is the part I hate. Sitting and waiting for results, but I hoped and expected the cancer to be gone. I really wanted to see the expression on my Oncologist’s face seeing those kind of results without treatment.

But, unfortuntely, it was not to be. The cancer was still there and had grown a bit since my last MRI in 2020. Not all that much for 3 years of no treatment, but some growth. But a new kind of PET scan that can detect my specific cancer type anywhere in the body revealed no new cancer locations. That was good.

The Oncologist offered me two treatment options:

• Go back on Lanreotide, the shot I had stopped taking nearly 3 years ago, in hopes that it may supress tumor growth
• Radical surgery

I did not even ask what the radical surgery was and told him surgery was out of the question as was any further radiation. But I said I would try the Lanreotide shot again so I got one while I was there. The side effects were much worse than I remembered. I was basically unable to digest my food well and the diarrea was very bad. I could not sleep well and my brain wasn’t functioning at the high levels it had been. I was tired a lot.

This went on for 10 days. As I measure all treatment effects on quality of life, I do not think I want to spend 1/3rd of my life this way.

But there was little time to think of such things with my daughter in town for the holidays. On Christmas Eve we moved locations to Jacksonville where my mother-in-law lives and spent Christmas and New Years with family. And we planned our move to the mountains of western North Carolina where we would be putting down roots in mid-January.

After doing more research on the ketogenic diet and cancer, it seems clear that this diet can supress, or even reverse, tumor growth. So, why did that not happen for me? Well, unfortunately because my insurance company at the time denied me having an MRI in 2021, I don’t have a good pre-keto baseline. Prior to keto I had been pre-diabetic, which means that the cancer had plenty of glucose to feed on. A glucose party really. Worse, on the vegan diet I tried I was juicing and that means the sugar level was astronomical. Could it not be that all of the tumor growth happened during this time? There is no way to know for sure, but that makes sense to me.

So, now we have a baseline. And now I am doubling down on keto shooting for what is called ‘theraputic levels of ketosis’. This means I need to get my fasting glucose level down into the 70s and my ketones over 3. The only way for me to do this is fasting and so I am trying to be more consistent with my intermitent fasting and upping it to 18 hours fasting with a 6 hours eating window. So far, so good. I am very nearly at the theraputic levels.

I believe I can slow or even reverse the cancer growth with this diet alone.

But then there is glutamine. I have been digging deep into the studies of Dr. Thomas Seyfried who for decades has been promoting a way to cut off the fuels for cancer. In his studies he as found that glucose is one fuel, which a keto diet at theraputic levels can limit. But he has also found a second fuel called glutamine that cancer uses, which comes from amino acids that cannot be controlled by diet and are needed for other functions in the body including the immune system. So what to do? Dr. Seyfried has come up with a theraputic strategy called Press-Pulse, that combines theraputic keto diet with ways to supress gultamine. I won’t get into details in this blog, but the main issue that this therapy is not part of the standard protocol, but does require physician assistance. So, how do I find a physician that is willing to help with this and, for sure, they will not be ‘in network’ with my insurance company so how could I afford it? Our system really sucks.

So, no new lessons learned at this time. As I mentioned in the last post, no matter what happens, I’ve already won. I am 10 years out with a cancer that should have killed me by now. I feel great and have a terrific quality of life.

Lessons Learned:

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1: Focus on finding out what cancer you have before thinking about cutting it out.

2: Do not let them rush you. Take your time and make good decisions.

3: Trust your instincts. Don’t be afraid to do something different than your doctor suggests.

4: Take time to find a specialist, especially if you have a rare condition.

5: Learn and get support from other patients going through what you are going through.

6: Question if the medications are necessary. Is there some alternative? Consider the cause of the condition and see if there is anything that can be done to address the cause rather than treat the symptoms.

7: Doctors are not God. They do not fully understand how the human body works and often are focused only on their specific area of expertise.

8: Do not rely solely on doctors. Take control of your own healthcare.

9: It is important as a cancer patient to have something in the future to work towards, despite the cancer

10: The body is a self-healing machine. Help it heal.

11: What you eat is important in your healing. Be open to different ways of thinking about what a healthy diet is.

12: Don’t wait. Live life to the fullest while you can!

13: Learn to recognize when stress is impacting your body and learn how to de-stress.

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Coming next in the series: Still kicking

Disclaimer: I am not a physician nor any kind of healthcare worker. Nothing I say should be taken as medical advice. I will simply tell my story for my particular situation and hope you will get something out of it.