Perspectives and hope

 In January of 2018, my husband had surgery to remove his cancerous prostate gland. 

In October, he had surgery to remove a brain tumor. The day he was discharged, we received advice from the social worker that stuck with me; I cannot let it go. 

In December, emergency surgery was necessary to relieve pressure on the brain above the previous surgical site; a hematoma had developed. They thought it was a stroke. It wasn’t. 

Chemo and radiation started and stopped, allowing healing time after and between surgeries. He’s had surgery, powerful chemicals, and very high doses of radiation.

This is the standard of care, or SOC, for highly aggressive, grade IV, glioblastoma multiforme. There is no cure, and the SOC usually doesn’t work.

We now wait one month before the next scan. The wait is excruciating.

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Advice given the day of discharge was to not read too much on the Internet, that some of the advice out there can lead us astray. They warned us of fad diets, supplements, herbal treatments, and pretty much anything not included on their own “After Visit Summary” instructions.

They advised us to follow the regimen that everyone else follows, the SOC for many, many years, to stick to a particular pathway (regardless of the very poor outcomes). You can guess how well this was received.

While I understand absolutely their intent–there are quacks out there and no doubt plenty of bad advice–I could not get this out of my head. Among the fear, anxiety, horror, and everything else that has irrevocably changed our future, that “advice” has been floating around in my head every single day. It’s pretty hard to come to terms with the fact that we have been instructed to ONLY follow a known path of destruction*. 

Having been in the medical field for many years and from when I worked on my master’s, I am very familiar with learning paradigms. An MD may have different perspectives than a DO, for example. The former may tend to write a prescription a bit sooner whereas the latter may tend to first find the cause of the ailment. Our Radiation Oncologist provided a similar example. In his experience, those newer to the field may call for a scan sooner–with gliomas, there are often false positives on the first MRI after treatment has ended–whereas doctors who have treated many more of these patients tend to base the next step on how the patient feels, rather than a scan.

This matters because every body responds to treatment the way it will respond, not necessarily the way another body under the same conditions might respond.

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Over a year ago when cancer first entered our lives, I purchased two books. With respect to cancer, the authors offer another paradigm. They suggest that cancer could and maybe should be looked at as a metabolic disease, one whose outcomes could be affected by non-traditional–yet evidence-based–treatments or pathways.

The cancer-as-a-metabolic-disease idea caught my attention. The authors of the books suggest diet as a way to control our health, specifically cancer, specifically glioblastoma, and specifically following a Keto eating plan. The authors believe a fermentation process is required for cancer cells to grow, and that calorie reduction and the elimination of sugars will starve cancer cells that make up glioblastoma tumors. In addition, being in ketosis along with other therapies boosts healthy cells and does harm to cancer cells. (1) The science is beyond my ability to describe here. However, if a diet change can offer hope, if it means I can do something, anything, to extend the life of my husband, I absolutely will.

According to the readings, people have been positively affected by following the keto diet with respect to cancer. It appears that putting the body in a state of ketosis leads to tumor reduction. We are following the doctors’ advice, but now with a significantly tweaked diet. We have nothing to lose and everything to gain.

Our care team has been fabulous. Our doctors have shown repeatedly that they want the best for us. However, I do not think the stay-away advice was the best. It offers zero hope. Families are hit with a devastating blow and left in the cold with very few options.

A certain diet may work for that one person. Why this is not suggested as a complementary, concomitant treatment to the SOC is not clear to me right now.

The bottom line: if something as simple as changing our eating habits might inhibit tumor growth, I could not live with myself later if I didn’t try. My husband is worth it.

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We are not bitter. We have accepted this diagnosis and are doing our best to move forward. We try to find joy in each day, in each other, in our children and our future. We are not delusional to think a diet can cure cancer; we can, however, look ahead with a smidgeon of hope.

It has made all the difference.

Happy New Year to you. Blessings and thank you for reading. ❤

 

* In the Forward, page viii of the cited book below, it reads, “What is more concerning is that while the current standard of care may increase survival on average by a few months, it actually promotes tumor aggressiveness and metastasis in some cancers.”  The Forward was written by Dominic P. D’Agostino, PhD, Dept. of Molecular Pharmacology and Physiology, Morsani College of Medicine, University of South Florida.

1. Christofferson, T., Tripping over the truth. White River Junction, VT: Green Publishing, 2017.