Part 4: Get busy living or get busy dying

This is part 4 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.

I wish I could say that in those early days post-diagnosis, I had recognized my culpability in the development of the cancer and sought to change my lifestyle. But I did not.

After all, I had an incurable cancer and most likely would be dead in just a few years. So why change? Why not enjoy the things I like while I am still here? Why stop drinking two Mountain Dew’s a day? Why eat healthy? Why exercise or make any other change? I’m a dead man walking.

Don’t get me wrong. I wasn’t depressed and moping around. I just threw myself back into my work, my family and my usual routines while trying to have as positive an attitude as possible.

But as I approached the two-year post-diagnosis mark, my attitude began to change. As it was said in the movie “The Shawshank Redemption”, “get busy living or get busy dying”. At the time, I still believed my life was to be shorter, but now my mindset shifted towards making the most of the years I had left. I posted something to that effect on Inspire.com and they asked me to write a blog article for Stanford Medicine, which you can read here, to get an idea of my changing mindset. Basically, I was maximizing my free time so that I could spend time with family and to try new things like horse-back riding and skeet shooting.

But I also started reading books about cancer, health, spirituality, diet, the body / mind connection, the healthcare system and more. Topics the old Dave would never have considered. Here they are organized by category. I will be mentioning some of these throughout the remaining blogs and how they helped change my thinking and attitude.

Cancer and Alternative Medicine

• “Dying to Be Me: My Journey from Cancer, to Near Death, to True Healing” by Anita Moorjani
• “n of 1: One man’s Harvard documented remission of incurable cancer using only natural methods” by Glenn Sabin and Dawn Lemanne MD MPH
• “ANYWAY YOU CAN: Doctor Bosworth shares her mom’s cancer journey. A Beginners Guide to Ketones for Life” by Annette Bosworth M.D.

Body / Mind and Healing Connection

• “Mind over Medicine: Scientific Proof that you Can Heal Yourself” by Lissa Rankin
• “Fighting Cancer from Within: How to Use the Power of Your Mind for Healing” by Dr. Martin L. Rossman
• “Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon’s Experience with Exceptional Patients” by Bernie Siegel
• “Life, Hope and Healing: Prescriptions from the Heart” by Bernie Siegel

Spirituality

• “Love Wins” by Rob Bell
• “Simply Jesus” by N.T. Wright
• “Surprised by Hope: Rethinking Heaven, the Resurrection, and the Mission of the Church” by N.T. Wright
• “Living in a Mindful Universe: A Neurosurgeon’s Journey into the Heart of Consciousness” by Eben Alexander III MD and Karen Newell
• “Proof of Heaven: A neurosurgeon’s Journey into the afterlife” by Eben Alexander III MD
• “What If This Is Heaven? How Our Cultural Myths Prevent Us from Experiencing Heaven on Earth” by Anita Moorjani

Presence and Consciousness

• “Present over Perfect: Leaving Behind Frantic for a Simpler, More Soulful Way of Living ” by Shauna Niequist
• “The Power of Now: A Guide to Spiritual Enlightenment” by Eckhart Tolle
• “The New Earth: Awakening to Your Life’s Purpose” by Eckhart Tolle
• “The Emotion Code: How to Release Your Trapped Emotions for Abundant Health, Love, and Happiness” by Bradley Nelson

Diet

• “The Dorito Effect: The Surprising New Truth About Food and Flavor” by Mark Shatzker
• “Chris Beat Cancer: A Comprehensive Plan for Healing Naturally” By Chris Wark
• “ketoCONTINUUM: Consistently Keto Diet For Life” by Annette Bosworth M.D.

Healthcare system

• “Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients” by Ben Goldacre
• “Ending Medical Reversal: Improving Outcomes, Saving Lives” by Adam Cifu and Vinay Prasad
• “The Primal Prescription: Surviving the ‘Sick Care’ Sinkhole” by Doug McGuff and Robert P. Murphy

This was a long process that spanned several years and which I learned many new lessons that I will expand on throughout this blog series.

Early on I began to look closely at what I was eating and drinking. The first thing I did was stop my 2-a-day Mountain Dews. As I read books such as “The Dorito Effect” I started cutting down on processed foods and foods with added sugars. I began to eat only whole grains instead of white bread, more vegetables, and fruits. During this time, I found an app called Fooducate which allowed me to scan items at the grocery store and it would provide a rating and an explanation of why this food was good or bad.

Did my new diet stop the cancer? No, it did not. Did it have other health benefits? Yes, it did.

I mentioned in a previous blog that I noticed on my MRI scans that I was consistently diagnosed with a “fatty liver”. I had asked my oncologist about it and he basically said there was no cure for that. But he was wrong. In early 2017, I noticed my scans were reporting “normal liver”. Fatty liver was never mentioned again. I thought this must be significant and brought it up with my oncologist, but he was unimpressed and brushed me off. He only wanted to talk about cancer treatment.

So, I researched it myself. Fatty liver, as the name implies, is a chronic health condition that causes fatty deposits to become trapped in the liver. It is a serious health condition that gets in the way of how your liver is able to process toxins. Long-term, undiagnosed, or untreated fatty liver can lead to cirrhosis and eventually death.

According to Mayo Clinic’s web site, “Experts don’t know exactly why some people accumulate fat in the liver while others do not. Similarly, there is limited understanding of why some fatty livers develop inflammation that progresses to cirrhosis.” But they do indicate Non-Alcoholic Fatty Liver Disease can be linked to insulin resistance, high blood sugar and high levels of triglycerides in the blood.

So, I deduced that my the low-sugar diet had cured my fatty liver. Later, when I became interested in the Keto diet (we will talk about this in a later blog), Dr. Boz confirmed my thinking in “ketoCONTINUUM: Consistently Keto Diet For Life”.

Finding that I had inadvertently improved a serious health concern simply by restricting sugar in my diet, reenforced a lesson I started learning when I began my research and my diet and lifestyle changes: “Do not rely solely only on doctors. Take control of your own healthcare.” This is a theme that was reenforced time and again and I think is the most important part of my journey to life.

Take a look at my oncologist’s attitude towards my fatty liver. He knew the cancer wasn’t causing it and so it wasn’t in his wheelhouse. That’s for some other doctor to worry about.

And so, the cancer specialists are really just focusing on using the tools at their disposal to impact the cancer. They aren’t thinking about my quality of life, overall health and impacts their treatments can have on other aspects of your health. And surgeons are only thinking about surgery. There is little discussion or follow-up with your quality of life after surgery. It was up to me to think about these things and make decisions accordingly, such as when I decided not to have the Whipple surgical procedure.

My primary care physician was the closest to having the big picture, but it was still up to me because I only saw him once or twice a year and only for about 15 minutes. Once I took ownership, my doctors became more like consultants; experts in a particular area that I can consult about, but all decisions are up to me, based on the big picture.

After reading “Bad Pharma”, the second area I focused my attention on was my medications. I mentioned in a previous blog how I had been taking two medications long term; an antibiotic for my rosacea and Prilosec for my acid reflux. I began to question whether I should be taking these medications for so long. The doctors said it was fine and they continued to write the scripts for the antibiotic and had never recommended getting off Prilosec. In fact, they recommended increasing the dosage of Prilosec. But what if I just stopped taking these?

And that’s what I did. On a single day in 2015, I stopped taking both medications. So what if my face became red again from the rosacea. And I would look for natural ways to manage my stomach acid.

As it turned out, I didn’t have rosacea anymore and my face did not turn red. I don’t know why but suspect my diet change helped the situation.

As for the acid reflux, my wife found a solution for the stomach acid that worked pretty well and got me through the transition.

Put 2 tablespoons of apple cider vinegar and ¼ teaspoon of baking soda in a glass. When the fizzing stops, add some water and drink it all down.

I would take these ingredients to the office and use it as needed. In time, my stomach adjusted to the lack of Prilosec. Additional research indicated my issues were mostly brought on by my diseased gall bladder which had been removed in 2013. For years and years I had stomach issues and no doctor ever brought up the possibility of gall bladder issues. They just told me to keep taking Prilosec and so that is what I did. Until I took charge of my own healthcare.

Lesson Learned: 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.

All medications have side effects. Consider the antibiotics I was taking for 10 years. During those 10 years the importance of gut bacteria to overall health has come to light. It is not unreasonable to assume that the antibiotics were killing off important gut bacteria too. And who knows if that somehow enabled my cancer to develop. The human body is just too complex and no one, no doctor anywhere, can know how it all works together. To me, it is better to simplify and not add any unnecessary medications.

Lesson Learned: 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.

With my new knowledge and experience owning my own healthcare, I was feeling more in control of the situation and more hopeful of living longer and maybe even ridding myself of this cancer. It was over 4 years since my diagnosis and the cancer had remained but was smaller and stable.

But then there was a setback.

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.

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Check out Part 5 in the series: Dealing with cancer recurrence.

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.