December faded into 2012 and like most, I made a New Year’s resolution. My resolution was to push hard knowing that I can only control a scintilla of my existence in this life. I mean if you are going to have to do chemotherapy and radiation you have to push hard knowing that about the only thing you can control is your attitude on life. Part of life in that circumstance sucks, but what’s the point in doing the treatment to try to save your life if you can’t also focus on how good life is and can be. I wanted to start the new year and my new normal with a positive wave of energy knowing that what I was about to do was going to take every ounce and then some.
I went back to see Dr. C knowing I needed to do another MRI so he and his team could aim the laser beams in the right place. The primary placement of the beam would aim at my residual tumor, which is just above and behind my left ear. When using conventional radiation the beam is aimed at the tumor, but the beam acts like a spray nozzle on a hose, not only hitting the tumor, but showering the brain as it exits the other side of my head. It is not ideal. It would be like me spraying herbicide on a stubborn weed at the edge of my yard only for the residual spray to kill my neighbor’s prized rose bush. In an effort to solve one problem, we often create another, which we accept as collateral damage. It would prove to have an impact on my long-term health, but when needing radiation the goal is to save a life now, tomorrow is tomorrow.
At this point, I had already spent more time in an MRI machine than I cared to, but the experience started to become normal. “Normal” is supposed to be eating, breathing, sleeping, not sliding into a noisy coffin-like contraption. But there I was once again and my routine started to become more of a game of memory. I would listen to the cycle of the MRI, counting the beeps, clunks, thumps, and dog whistle sounds, mimicking and anticipating them as the sounds would fade into another repetitive pattern. One of the things I got really good at was knowing it was almost done based on the rhythms and sounds. Prior to this MRI I was given the usual foam ear plugs and the sound cancelling headphones. Now if there is ever a over-marketed item out there, it must be “noise cancelling” headphones. They should test them on people in MRIs before they are permitted to call them as such. They were right in that they are headphones, but the noise was not cancelled. I wore them anyway for an extra layer of sound protection against the unnatural sounds of machine.
When I first started regular MRIs I was asked what my favorite radio channel might be as they could play that through the headphones. I thought it was a great idea, but it turned out to be just that, a good idea. It didn’t matter if it was Bach or Led Zeppelin on the radio, I would only hear some snippets between the overbearing sounds of the MRI. It was like listening to a record that a three year-old got a hold off, playing a recognizable word every ten spins around the player. If you must listen to something in the echoing tube, I beg that you do not listen to NPR. I love NPR. The stories and news mixed in with some rare music was and still is a delight. But the MRI has a funny way of seeing your brain, but not your mind. If it saw my mind, it would have seen immense frustration. There is nothing worse that hearing bits and pieces of a story, missing large amounts due to the noise… “John only had two choices”…beep, honk, train wreck sounds of the MRI… “the second choice was” …siren, hucka chucka, airplane sounds of the MRI … “and that’s how John became a” …aw screw this!!! Again, I beg you not to torture yourself with this madness, just try to relax and enjoy the unnatural symphonic tones knowing it has to end sometime!
As I grew more comfortable with the MRI, I was able to take my experience into what would become my daily practice of radiation treatment. I went back to see Dr. C and he told me the I had one last step prior to starting treatment, which was having my face and head fitted for a mask. I don’t recall any prior discussions of this need, but it sounded rather routine in comparison to what I experienced over the past couple of months. I went back into the waiting room for my name to be called. I looked around at the room with the puzzle on the table somewhat more complete than the last visit. The borders were filled in, but the flowering fields that made up the image were spotty at best. I couldn’t help but wonder if this puzzle would ever be complete. It was somewhat of a symbol to me of treatment. The outer margins were complete and set, but the inner pieces were constantly being played with to see where they fit. My treatment plan was set, but the inner workings of the “plan” were scattered on the table of life with the hope that they would fit and show the image as designed. I already had one piece missing from my puzzle, so my goal was to make sure that when it was complete, it would be recognizable.
The one constant in the Radiology waiting room was another person there for brain radiation. I saw him the first time I visited the office, but we never spoke as I was not even sure what to say. It’s not like it was at a coffee shop and I could casually walk up to him and say, “come here often?” Perhaps I would introduce myself another time as my name was called to get my masked.
I entered the room and it gave me flashbacks of the surgery room. There was a table in the middle of the room and several medical professionals mingling about. It was explained that I would lie on the table and be as still as possible. With my MRI experience, I felt pretty confident that this would be an easy task…I was wrong. Lying still was technically all I needed to do, but what was being down to me was all together different.
The mask is made from some form of stretchy plastic mesh and is attached to a plastic clip that secures the mask to a radiation table. I lay on the table as the mask was placed into a warming container to make the mask pliable. Just as with the MRI, laser markers from the machine were lined up on my face and head as if to be a map for buried treasure. Once X marked the spot, the mask came out of the warming box and I was told the plastic mesh would be warm to allow it to conform to my face. My head still, the warm, pliable mask was placed on my face and pulled down to the table where the hard plastic borders snapped into the table. The table slid back into the machine as if I were a loaf of bread sliding down the cash register conveyor belt to be scanned. The machine acted like a large hair dryer in an effort to bake the mask to the contours of my face. Two people applied pieces of masking tape (I wonder about the aptly named tape) and drew “x’s” and dots on the mask as it dried. These markers would act as a guide for the radiation team to make sure the machine was lined up each day at the same spot.
Knowing that I needed to stay still for about thirty minutes, my anxiety rose as I attempted to line my nostrils up with the mesh holes. I pictured my nostrils on a mission to find the closest and widest opening in the mesh so as to divert my mind from focusing on the ever tightening mask as it dried on my face and neck. And just as I started to feel like a wild animal stuck in a hunter’s trap, it was over. The mask was removed and I stared at it in bewilderment. It stared back at me with no emotion. The white mask that reflected every curve of my face and even allowed my beard to escape through the mesh holes would greet me each day for the next 6 weeks, the same time each day, Monday through Friday. I left the mask fitting knowing that my next and final stop before I started treatment was back to see Dr. S in neuro-oncology to discuss the other half of treatment.
Dr. S and I chatted about my chemotherapy medications. The timing of each one and the order I needed to take them was quickly added to my calendar. The month of February and March looked like the agenda of a sought after movie star. It was an artwork of efficiency down to the very seconds of the day when I would take this, travel there, do this, and rest. For now, I absorbed it all and did the one thing I could do…I waited.
January was coming to an end. My dad’s birthday was coming up and I reflected hard on how life had changed so much in less than a year. Sometimes I focused my thoughts on him in order to escape my own reality and sometimes I honed in on my life so as not to think of his death. Cancer brings you to the brink of life and death where the line is sometimes so thin that one might not know which is the goal. While cancer destroyed my dad’s body I could see him fight hard to control his mind and spirit. I thought of that often as a prepared for my own treatment having had a glimpse into what treatment would do to me. When you think about it in real terms, I was about to do everything I could do to almost kill myself in hopes of living. “Almost” is a very thin line.
With my mind on my mortality, and the aim to live, I was not only struggling with my health, but another critical decision in my life. I knew for over a year that I wanted to marry Sarah. Timing seemed to be the problem. A few months after my dad passed, Sarah and I went on a great vacation and upon coming home I started working on ring plans and proposal ideas. Two months later, I was diagnosed and while I had the ring, I wasn’t even sure I would be able to give it to her. How could I ask for something that would bring me immense joy knowing the pain it would inevitably cause? Is it selfish to ask her to marry me? Is it selfish not to ask? If I asked and she said no, what would happen? What kind of a person with brain cancer proposes to his girlfriend…what kind of person would say no? I struggled with this proposal for quite some time, but as surgery came and went and treatment was on my doorstep, there was nothing that made me want to live more than her.
As I struggled with the when, where, and how to propose to Sarah, I found myself back in Dr. K’s office for a post-surgery follow up. In his eyes, everything went well and I was looking good. Me looking good prompted me to push the envelope a little bit and ask if I was allowed to get on a plane. It had only been a month since surgery, and I had become accustomed to train life but one of my best friends was getting married and I was a groomsman. The only catch was the wedding was just outside of LA, and that meant a long flight, a lot of head pressure, and a whole lot of uncertainty. Dr. K was hesitant, but said he would not stop me from getting on a plane. I was still on steroids, still swollen, but knew this would be my last hurrah before treatment. Sarah and I boarded that flight and we ventured into the unknown to end the worst year of my life in hopes of starting what would be a challenging, but perhaps a more positive year. Had I not boarded that flight, I would have cheated myself an opportunity to live. The trip hurt a bit, but nowhere near what it would have if I were too scared to live my life wholly. That journey was filled with magical moments and allowed me to see myself as a friend rather than a patient, only fueling the notion that life is worth living to the fullest.
With my renewed spirit and ability to fly with some confidence, I boarded a flight from DC to Boston on February 17th, which happens to be my brother’s birthday. I was nervous and still unsure as to whether I was doing the “right” thing. I stared at the ring, wrote a final pros and cons list, and I stared out the window for any sort of sign. My plane landed and Sarah was there to pick me up. There, standing in front of me with a big smile, I received my sign. We got into her car and we drove up to my parent’s old Bed & Breakfast on the coast of Southern Maine. After my dad died, my mom was able to operate it for a while with the help of my brother, but the time had come for the painful reminder to transfer hands. I wanted to propose there in hopes I would feel my father’s presence and perhaps let him know that what he and my mom built would forever be remembered.
I am not sure if you have ever driven the I-95 corridor on a Friday from Boston to Maine, but if you haven’t, don’t. Traffic was a mess and the sun was sinking in the sky like my plan to propose on the top deck of my parent’s B&B. A mix of hurriedness, lack of control and the ever-present aggression from steroids was coursing through my body and mind. It showed, and I recall feeling like I had ruined the proposal before I even gave it. I calmed down reminding myself that I was trying to control something that was beyond me. How could I control the idiotic driving of this jackass in the left lane forgetting that it was Friday and we should all drive like mad because I have something to do that is very important to ME??!! I believe that was my sense of calm at that moment.
We arrived at the B&B as the sun was illuminating the Atlantic in a golden hue. I had mixed emotions as we drove up to this place of memories. To this point, I only told one person that I was going to propose to Sarah there and then. My mom lived about 20 minutes away from the B&B and I asked her for a favor. Sarah loved these homemade truffles that my mom made. She used to eat them by the handful, so I asked my mom to make a plate of them and leave it on the balcony on the top floor. I figured regardless of Sarah’s answer, she would at least have something she liked, and if the answer was “no”, then I had some woeful treats of my own. In an effort to keep some of my history for just my wife and I, she did say “yes” through a mouthful of chocolate.
We celebrated with my mom and then Sarah’s family a day later and I was immersed in bliss for the first time in a long while. I still saw the shadows on the walls, but the lights were too bright to care. Sarah’s joy and love coupled with the fact that she was now my fiancée were the best medicine I could have received. The celebration was one of joy for us, but it was also a message of hope. Hope for another day, another month, another year…hope for a life together where cancer was only part of the story.
One day later I was on the flight back to DC. I smiled the entire way until the wheels touched down, then like a switch, my thoughts looked towards tomorrow as the start of my radiation and chemotherapy. With the positive medicine still filling my soul, I went to bed dreaming not of poison pills and laser beams, but of love, joy and of course, hope.