When I think of the word “treatment,” my mind wants to wander off to a high-end spa vacation with massages and relaxation treatments. The scene set as a warm summer breeze on some island with not a care in the world. There is a large pool, hot tubs, spa, and the ocean backdrop with the smell of the sea mist in the air. It’s a choose-your-own adventure so think of thermal pools in Iceland, or sipping Sangria in Barcelona…are you starting to see your picture? Finishing treatment would tend to give a sense of feeling rejuvenated after an experience of pampering and carefree bliss, not concerned with inevitable re-entry into reality.
Well, my question is, why the hell would two dramatically separate events be referred to as the same? I just gave you a brief example of what a cancer-free “normal” person might imagine the meaning of “treatment” being, and through the last post, you have read about what chemotherapy and radiation treatment entails. Treatment is the idea of either treating a person or treating a problem the person is enduring; in my case, brain cancer. Having started treatment and abiding by it as if they were the deities of health and life, it was hard to avoid the understanding of what you are actually doing or enduring. Treatment was laser beams and poison pills not Mai Tai’s and stone massages.
So, given a choice, I will take the spa treatment every day of the year. But I say that with a cautious mind knowing that needing cancer treatment again is a foregone conclusion. I have a choice in both, but know one might help me live longer while the other might help me live better. Luckily there is no rule that I cannot have both, and consequently I am lucky to have such polar options. I am thankful for my “treatment.” I honestly don’t know if doing so gave me a chance to live longer, but I, personally, would have wondered more if I hadn’t gone through it and ended up dying quickly. Treatment was hard, but it was a challenge and it motivated me to live this life; plus, the spa treatments to come were rewards enough.
The first couple of weeks went by and while I felt some fatigue, I was able to keep my daily routine. Sarah came down for a visit and I felt more or less normal. I learned as I went that seeing myself daily in the mirror became a slow normal as to not have much impact on the way I thought I looked. I liken it to the growth of a baby and how quickly they grow in the early months and years. If you haven’t seen the baby in several weeks or a month, there can be noticeable changes, but the parent may not see it the same having been with the baby throughout. I started to notice the way I looked in other people’s eyes and it was a stark contrast to the man I saw in the mirror. I didn’t see the greying of my skin, and the level of fatigue in my smile, nor did I initially see my decreasing muscles and strength. We see what we see and often we see only what we want to see.
My mom came to visit a couple of weeks later. I had just finished my third week of chemotherapy and radiation and I was starting to feel the side effects more and more, but I was happy to see my mom and spend time with her. I think there were silent agreements amongst my family and friends that I should not be going through this on my own. The traffic of family and friends was something I would have never asked for, but I am beyond grateful and will forever be. My mom and I had a good time the weekend and I hit a milestone that most people with brain cancer experience. While the radiation beams blasted my head on the outside, the chemotherapy was doing its part from within. It is a great design not unlike searing something in a pan and then putting it into the oven to cook through. It is not a great design if your head is in the pan or the oven though. At some point during treatment, I knew my body was going to have a negative reaction, I just didn’t know when it would start and where it would end. After nine years post-surgery and treatment, I now know that the side effects do not end, but I have learned to live with them and smile at the same time, but it has been an education in patience and acceptance…I am still no master student.
During my mom’s visit, I took a shower in the same bathroom where I stared at Sarah’s name on my phone when I had to tell her I have brain cancer. The moment will be forever burnt into my mind like a scene in a movie. This time, I showered and opened the curtain to see myself in the mirror looking nothing like I did just six months prior during that phone call. I grabbed my towel, began to dry my hair only to realize that was a feudal matter. My hair was coming out of my scalp as if my head were a withering dandelion in a gusty wind. The threads scattered with even the slightest touch and floated to the floor as if dust in the wind. I stared in the mirror and pulled my hair out with ease. It just decided, at that moment, to free itself as if knowing it was in the line of fire. I had lost not a single hair up until the point, but in that moment of time and space, it was determined to be. I dressed and slowly walked out into my living room. My mom looked at me, and I her, and we cried. I could hide no more. The final costume pieces of my attempt to look healthy and “normal” were gone like Cinderella at midnight. Treatment was taking hold.
Instead of pulling the remaining clumps of my shedding hair, it was easier to use a lint brush and in moments I was a powdery, smooth, bald man. I had used that lint brush on all my clothes almost every day so that I did not carry Shadow’s fur with me everywhere, but then, in that moment, the black plastic handle and red cloth pad seemed to find its higher purpose.
My mom headed home after the weekend. She is a nurse. She is retired now, but she will forever be a nurse. She thinks like a nurse, she cares like a nurse should and she is also my mom. She never had cancer, but she cared for her husband and son as she knew what we needed and when we needed it. As I waved goodbye to her, I smiled through streams of tears not really knowing what or how I would be the next time I saw her, but I knew no matter what that she would be the same loving, caring mom and that feeling is like sitting next to a warm fire, beverage in hand, just knowing you are safe at home.
I was getting beyond halfway through the radiation treatment and now I certainly looked like it. Not only was I bald, but the radiation treatments were starting to singe my newly bald head and cause some discomfort to my jaw and ear where the radiation beam angle persistently bore through. During the time, I would tell myself that these sensations and newly onset pains were temporary. I was more focused on getting through treatment and living than any of these potential life-long side effects, so I pushed the discomfort to deep places in my mind and focused on nutrition.
I was rather healthy before I was diagnosed. Being a vegan isn’t necessarily a badge of health, but for me, it was a lifestyle that I maintained for principles and health. Going into treatment where I heard about the effects on my body and mind, I started to research if there was anything I could do to help. I read some interesting articles on how cells work and get damaged and mutate, but the recommended course was chemotherapy and radiation. I was already going to be doing that, so I went to the hospital’s oncology nutritionist. I scheduled the visit for my first week of radiation and chemotherapy to save me a trip back to the hallowed halls of the Lombardi Center. We spoke about my current diet and lifestyle and I couldn’t help to feel that the conversation was pushing me to leave my vegan ways and adapt a more American diet with animal fats and proteins. The handouts were just that, a one-size fits all handout because no one focused on anything but medical treatment. I finished my appointment, took the handouts and walked home with a sense of demise. I asked myself if my diet was lacking nutrition and perhaps that is why I have brain cancer, but my only reply was, “who knows.” I decided to adapt my diet, not by adding meat and dairy, but by adding things to help my body fight. I knew sugar was a cancer food and envisioned all the sugar I had consumed for as long as I could remember, forming a mountain of sugar cubes in my mind. I tried to focus on eliminating that toxin and anything else that could cause inflammation. I read an article in the National Institute of Health and it scared the shit out of me. I thought I was living a healthy lifestyle because I was a vegan, but I was basically an inflamed body of plants and carbs. I vowed to be mindful of what I ate even more so than I already was, especially now knowing that it could be a matter of life and death.
March was in full swing and I felt the damp bitter cold tail end of the DC winter. My bald head constantly in a beanie served as a protector from the cold and the sights of curious eyes. I loved the warmth, but the feeling on my head and particularly on the scar and entry point of the laser beam was beginning to be more uncomfortable. Sleeping on my pillow became a nightly game of shift and wait until I found a position that was good enough to fall asleep. The day-to-day grind of life was a challenge, but life should be a challenge. The one thing I needed more than anything else was a sense of normalcy and I was able to experience that through people that had known me for decades.
I received a visit from my best friend, Joe. We grew up together and then lived together for 5 years in DC. He moved back to California just a year prior to my diagnosis. There are only a small handful of friends that knew me inside and out and Joe is on the top of that list. His visit was enough to keep me positive and it gave me the energy to finish the month strong. Good people in your life are a form of treatment. When you surround yourself with people you love, you feel the love back without the need to see it or hear it. Brain cancer has taught me the value of relationships and the ones worth being a part of at the end of life. One piece of advice if you are reading this, whether you are called, “patient”, “survivor”, “caregiver”, “human”, think of the people you want by your side and just make it happen. It is undoubtedly the best medicine and treatment one can self-prescribe. It was visits like his that made me focus on something other than cancer, even if only for a flashing moment.
With two weeks left of radiation, I felt fairly good most of the time. I didn’t feel like I was on the top of my game in life, but it was nice to know I wasn’t at the bottom either. The poison pills and laser beams continued to work as they should. My hair showed no sign of immediate return, which didn’t bother me. The laser beam was starting to shave off the left sideburn of my beard as if a master barber was creating an intentional fade at one of the oddest places on my face, and only there. I was able to grow a beard starting in high school, and because I could, I did. I would grow all sorts of combinations, but always loved the sideburn. It is probably the inner hippie in me, but when that sideburn started to fade more and more, my soul held its breath. We often try to hang on to our normal not because we fear the future, but because we already know the past. There is something about “the good old days” and that general sense of nostalgia that most all of us clinch in our hands so tightly. I knew who I was with a beard and sideburns, and I didn’t know who I would be without them. It was clearly not about the fading sideburns; rather, my inability to initially find comfort in the future beyond the forest of the past. During the middle of the week, I received an email from Sarah’s dad. It read:
You are approaching success!! 8 more radiation treatments and you will have completed one of the most grueling and difficult insults on your body and you are winning!!!!! It hasn’t destroyed YOU…”
The final week of radiation and a short break from chemotherapy were on the horizon. I could see the final peak and imagined I could rise to the top and the vista would take my breath away. This adventure was far from over, but I was happy to see the shimmering light bouncing off the highway sign ahead that read, “Rest Stop…Five Days Away.” Each day, I made an effort to appreciate the moments and find gratitude where I had not yet. I was thankful to be alive still, thankful for the smart people and technology they created, and of course, for the men and women at Georgetown Hospital and all those helping me. That week, I brought cupcakes to the nurse’s station in the ICU. I had some tough times in there, and it was where my recovery journey began. I recognized some faces and others just smiled, whether it was at me or the cupcakes, I am not sure, but the smile was the important part. I pushed through that final week, thanking the radiation team as I did each day. They saw me at my worst and best each day. I know that those in the medical profession are there to do a job, but we all know the difference between doing a job and doing a job with care. Having care for your work, your craft, those it impacts; care, is a component that goes beyond a resume. It makes an incredible difference for the person receiving the care and it just might make the difference in someone’s future. I honor those that helped me, not because it was their job and not because most did their jobs so well, but because of the care they put into me.
Before I knew it, it was Friday, March 30, 2012. I finished my last dance with the laser beams. I was handed my face mask to keep as a souvenir as if I would forget the daily routine and storytelling that set the stage for the past six weeks. I said good byes, I put on my clothes, headed to the check-out desk and thanked complete strangers. I looked down at the new, yet old puzzle with its pieces on the small table just waiting for someone to solve it. I thought about all the people (including me) that were waiting in that room hoping for someone to solve them. I walked away and down the long hallway to the ground floor and burst into the light of the day, tears running from my eyes, laughter and pain and rejoice beaming from every fiber in my being. The world looked no different than it had prior to reaching Georgetown Hospital just hours prior, but the way I looked at the world changed, mostly filled with an abundance of gratitude.