I regret my long hiatus from this blog. My family has been going through the most horrible and stressful year of our lives, and continuing the blog has just been overwhelming. Last April 23, 2015, my father was diagnosed with a brain tumor called a glioblastoma that is the most aggressive and fatal of its category. These tumors are projected to kill their sufferers within 14 or so months according to Dr. Google (which the real doctors tell you not to look at). It’s just horrible. He was 59 years old, working full time and living a normal life. He had surgery, radiation and oral chemotherapy. He was entered into an immunotherapy vaccine clinical trial. Treatments wiped out his immune system, depleted his energy and eventually he became hemiparetic (paralyzed on one side) from the swelling and scar tissue in the brain. In October 2015, his oncologist gave him 6 weeks to live. We were looking at planning a funeral before Christmas. Two weeks after that grim prognosis, however, things started to turn around. He went from sleeping all the time and grunting in response to questions to feeding himself again and using full sentences. As the weeks went on he was keeping his eyes open for longer periods of time, interacting with visitors and was even seen by physical and occupational therapists to improve his strength and function. He came home for Christmas. We took him to see the new Star Wars movie in the theater a couple weeks later. It was wonderful.
Here we are now, 13 months after his diagnosis and over 5 months since he was “supposed” to die. I won’t say he’s made a miraculous recovery (yet). He remains unable to use his left leg or arm, has been living in an inpatient rehab center since August 2015 and his tumor started growing again. Despite the damage that conventional treatment had done to him, it seemed to have worked for a period of time to put him into “remission.” I say that in quotes because this cancer is so aggressive that the word “remission” didn’t have us all cheering. It meant the tumor was still there, just inactive. A dormant volcano. No treatment was recommended because this dormancy is good. So we were supposed to just wait for it to erupt again. When tumor progression (growth) was seen on his last scan, he was prescribed more chemotherapy. This time, an infusion every two weeks for… indefinitely.
This past year has given us more quality family time than we have had since we all lived under the same roof (1999). I try to be grateful for that, for the moments I’ve gotten with my Dad that I otherwise wouldn’t have had. To see how my siblings, mom and I have all come together for him is comforting. What I’m most proud of is how we have made a concerted effort to maximize my Dad’s health since this happened. My sister Jen was the one who initially told me the news over the phone while I was out to dinner and had stepped outside after receiving several calls from her and my mom. For some reason, I became hyper-focused immediately on tackling the cancer and told her to take the soda off of Dad’s hospital tray. He hadn’t even gotten a definitive diagnosis yet and I was worried about the artificial sweeteners.
As a bit of background, I subscribe to several nutrition podcasts for fun and enjoy reading about health and wellness. Not saying I’m an expert by any means, just highlighting my nerdy side-interest that was the trigger to make dietary recommendations right away. I’ve learned so much over the past few years, and I recall that occasionally podcast guests had stories related to cancer. The big take-away I had gotten was “cancer feeds on sugar.”
Trying to remove sugar from my dad’s diet right after an already drastic, life-changing diagnosis was not an easy transition by any means. I had a talk with my dad in his hospital room about why I thought the soda and sweets had to go, and he said he’d do anything to get better. But he and my family were not on board yet. To be fair, I was jumping into these dietary recommendations without providing any of them with articles or evidence to back up my claims. I was simply acting like I knew what I was talking about while everyone was still trying to take in the devastating situation. He was discharged to short-term inpatient rehab where the food is nutritionally insufficient to say the least. After hardly ever having dessert in his normal adult life, he was getting it on every tray. No soda, but there were still plenty of carbs and sweets. When friends and family don’t know what to do in a crisis, they make cookies, brownies and buy stashes of candy. It’s all very sweet but it was stressing me out because I knew that it was all wrong. Once he was home we vowed to cook healthy meals for him. Friends and family jumped to our aide and my mom’s best friend even organized a schedule for people to make meals for us. She supported the healthy cause and informed everyone that we were sticking to a “Mediterranean diet” and avoiding pastas and carbs as much as possible. People still made dessert. Almost everyone actually. Some brought fruit and I praised them for it, but otherwise I was incensed by those who disregarded my wishes. I became the “food nazi” and people feared me. “Don’t tell Amy” was something I overheard more than once. Thankfully, most people were wonderful and made very healthy meals. It wasn’t until about 5 months after his diagnosis that we committed to a cleaner, Paleo-style diet. He has an occasional treat on holidays or special occasions (or maybe just when I’m not there, who knows), but for the most part we are all on board now. My sister took a leadership role in finding new recipes and incorporating recommended supplements into his meals and daily routine. Mom diligently mixes his vitamins into water and makes him take his morning and evening “cocktails” of supplements. We all cook for him. My brother moved up from DC to Philly to be closer.
There is no doubt in my mind that he is alive and functioning as well as he is today because of what we have done for him, at least in part. After extensive research into cancer and dietary strategies, we decided the best thing we could do for him would be to optimize his nutrition. If his body is in a weakened state already, the immunotherapy cannot work (in my hypothesis). In order to heal his immune system so his body can recognize and eliminate the cancer, we need to heal his gut, where most of the immune function is controlled. In order to do this we pulled out all the stops: Diet, supplements, family support, spiritual support from the church, social support from coworkers and friends. We sought out Reiki practitioners in our area who agreed to come to him for FREE since he was a cancer patient. He has had this energy healing ever since the fall and he loves it. He even took herbs blessed personally for him by John of God who is an energy healer in Brazil.
Below is a general timeline of Dad’s progression to a healthier lifestyle:
April 2015: Diagnosis
- elimination of artificial sweeteners
May 2015: home from rehab center
- move towards “Mediterranean” diet
- limit sugar
- maximize organic foods
- No added sugar
- organic produce
- pastured/free range meats when possible
- gluten free
- Added supplements: wheatgrass powder, vitamin D, vitamin C, curcumin, multivitamin powder, matcha tea, alkalized water
- essential oil therapy with frankincense
- Reiki energy healing
- Added supplements: cranberry extract, green tea extract, greens formula pill with probiotics, turkey tail, mushroom extract
We continue to do the best we can while furthering our research on natural ways to help the body heal. I truly believe our bodies want to heal themselves and it is our job to find the keys to unlock those mysteries before it is too late. I certainly don’t just want to prolong my Dad’s life, though in doing so it may give the doctors more time to try new treatments with him. I also want to maximize the quality of his life, and a more robust immune system can prevent infections and complications that many cancer patients face. The doctors told us he wouldn’t die from the cancer, but rather from complications such as pulmonary embolism (blood clot to the lung), bed sores, brain bleeds, etc. If we can prevent those complications we can give him a better shot at survival and possibly prevent some suffering. The odds are not in his favor and we realize that. But what choice do we have besides maximizing his chances from all possible angles? I encourage any family member or patient to do the same. Educate yourself. Advocate for yourself. You want something? Be as annoyingly persistent as you can. If the cancer can behave that way, then so can you. Kick some ass, be grateful for the good things, think positive thoughts, laugh when you can and teach your body to evict.that.cancer.