Based in Pittsburgh, PA, Cancer Experience Expressions is an online space for the sharing of cancer stories. 

Patient's choice

[wisdom] “Will not go against the Divinity that is planted in his breast; but rather he will preserve his deepest inner self in tranquility He will, above all, preserve his own autonomony and integrity, and not let anything alienate him from himself.” --Marcus Aureleous

Tomcat Field and treeline at Thiel College

Tomcat Field and treeline at Thiel College

 On July 5th, 2014, Mom came over to unhook my chemo. I was done with that stuff for a good while, hopefully forever.  When she unhooked me, there was no celebratory feeling of blissful accomplishment like my last chemo in Pittsburgh, because of uncertainty.

I didn’t know if my M.D. Anderson oncologist would prescribe another cycle of chemo. This would have been the chemo drug called “methotrexate”—one of the three concoctions constituting my first chemo regimen in 2010-11. But I had a hunch they would.

On one hand, I wanted to think about a positive result, yet on the other hand I didn’t want to get my hopes up. So there I was, in Epicurean equilibrium.  The only thing left to do was to maintain soundness and adjust appropriately to the way things went, all the while doing what I could to suffocate the cancer cells—I considered pursuing someone’s recommendation that I purchased a rife machine.

            All the while, there were places I wanted to travel like Colorado and Maine, sailing skills to acquire, Thielstock (music festival fundraiser event for Thiel College Relay for Life) preparation, and grad school tests to prepare for. The music festival was a blast, but a bit more than I could keep up with, really. I played bass guitar with two different bands after leading the organizational efforts. It was nice to try some different ideas during my last year as chairman of the event.

There’s always so much to accomplish while maintaining balance. Nutrition to help this along. I often gather great fruits, vegetables, and powders that serve my healing into a smoothie. I always try to include ingredients with properties promoting anti-angiogenesis (stunting the grown of capillaries). These tiny blood vessels bring nutrients to tumors, it works the same for the development of fat tissues. I’ve developed what seems to be a bodily awareness of this process. It’s like tiny worms delicately nudging their way between scar tissue and constantly regenerating nerves. Similar feelings of healing movement can be experienced through guided imagery.

            As I would ingest these nutrients (same goes for the tea) I feel a healing wave trickle over, ameliorating the perpetual strife between my immune system and the scarred, inflamed terrain. This is wave combats the centre of carcinogenic vulnerability. It’s a cool cloth after an August fester, tingling relief starting from the eye cavity, and slowly mingling toward back-right lower neck and head. 

            With that in mind and feeling, along with clean scans, I went from the M.D. Anderson suggestion of preventative chemo to a second opinion at Cancer Treatment Center of America in Zion, Illinois. I called them after learning their reputation for having a stellar holistic approach. They were compassionate, exceptionally rational and impressively accommodating, and my skeptical side wondering, “What’s the catch?” I mean, somehow they/my insurance covered basically every penny of this consultation visit. They flew me out there, picked me up in a limo touting healthy snacks, and put me up in a hotel. At the clinic they had an array of delicious organic food in the cafeteria. They paid for about ¾ of these meals. My cousin Michael came out and stayed a couple days with me. We were free to golf and take the free shuttle to Chicago provided by the center. We participated in a guided imagery workshop, and my experience with that changed the game. The discovery of the healing powers of psyche—affects I could feel—completely blew my presupposition about what medicine and health care means.

            I learned so much in my meetings with the various specialist, and enjoyed my free time in my chair in the hotel writing or jamming to my tunes in the hot tub. Then it was time to get down to brass tax with the oncologist. The young oncologist at CTCA basically echoed my highly-touted MD Anderson oncologist, suggesting the same chemo. Her reasoning was convincing, but there was a lingering skepticism. My gut was telling me she was passively aligning with the opinion of the more sophisticated and prestigious oncologist.

            However, with two oncologists saying the same thing, what can you do? This brought me back from leaning far left toward alternative medicine, right back to the middle—a real tough place to be when making a big decision. Both ways seemed like they could be what’s right. Something didn’t feel square about the thought of going into chemo, to thus contaminate when there was limited chance that it would effectively influence the cancer cells (they would have already been exposed to methotrexate in 2011), not to mention secondary side effects.

            Eventually, I headed to Cleveland Clinic to talk about immunotherapy possibilities and/or starting chemo with them, as their integrative care list seemed quite impressive online.  I was convinced that I would tolerate chemotherapy much better in conjunction with certain alternative treatments such as diet, massage, acupuncture, and reiki. Much to my surprise, the oncologist felt as if there were insufficient statistics to prove the harmful methotrexate to be worth it. He suggested a lifestyle change until better technology comes out. He was right in line with my thinking all along. It was such a life-changing experience because it affirmed my deep instincts.

Without knowing much about oncology, I feel that chemotherapy ought to be replaced more and more by new, less invasive technologies as we move forward in the field of cancer care.  Chemotherapy is given with the intention to kill cancer cells. However, it does not do anything to prevent new cells from springing to fruition. It’s a delicate balance. Cancer is cell growth run amok. But our body needs to replace cells that die. So why not promote a comprehensively sound inner health which manifests in favor of robust defense capabilities?    

Still, this ought not be taken as an unconditional chemo-bashing. The damages of these treatments have a unique value-determination according each individual case. I didn’t always play the role of “good patient,” eventually came to the conclusion that the rule of not eating after 10 pm only applies if I would be getting anesthesia. So on the morning of one of my scans, my girlfriend at the time got up with me and started cooking us breakfast, unaware of my directions to cut off the food valve the night before. I didn’t have the heart to tell her, so I waited until after devouring a hearty omelette to share that minor detail.

On August 21st 2014, Mom picked me up at 7 AM from Thiel College and went to Cleveland for a 9 AM 2nd opinion appointment with the an oncologist at the clinic. My intentions heading into that meeting was to learn about immunotherapy and to talk about possibly starting chemo with them, as their integrative care list seemed impressive online, and I was convinced that I would tolerate chemotherapy much better in conjunction with certain alternative/complementary treatments. This included nutritional counsel, massage, acupuncture, and Reiki. Much to my surprise, the doctor felt as if there were insufficient statistics to prove the harmful methotrexate to be worth it. He suggested a lifestyle change until better technology comes out. He was right in line with my thinking all along.  This was an eye-opening experience because it affirmed my deepest instincts while illuminating my impressionability. I was thoroughly convinced, after hearing it from the previous two oncologists, that chemo was the “right choice.”

On August 22nd, 2014 After looking up the Cleveland Clinic oncologist’s bio, I learned that sarcoma is not one of his listed specialties, but geriatrics was. So this really threw a wrench into things. As the two other oncologists were—unlike him—sarcoma specialists, were they more credible? With this, I decided to call and ask him to review my case with some of his fellows. Eventually, his team concurred that it was time to get very healthy.

As I write this now, a couple years removed from all of it, it seems that these various cancer centers I worked with had vested interest to have my case under their institution’s ceilings. One oncologist actually called me on the phone minutes before I entered a treatment which was contrary to their projected treatment plan. Their plea reeked of desperate professional inauthenticity.

While all this unraveled, one thing was clear: at the end of the day, it was no one’s choice but my own. A wise friend of mine once told me, “After all these years as a doctor, I’ve learned that more times than not the patient can say what’s going on with their bodies if listened to long enough.”

collection from Nancy's journal

Chemo in college