As the next few days passed, I played Dr. K’s thoughts over and over in my head. “It went really well.” I went from shear disappointment to an eventual sense of acceptance, but it took a few days of wondering what went wrong. I was looking at my experience in a negative light only focusing on what was not done, rather than the fact that I was alive and wiggling my fingers and toes. It was the first time I was alone with my thoughts and trying to make sense of the past few months. I was so focused on this surgery as a “cure” that I lost sight of some things I had learned throughout the process. I had somewhat convinced myself that brain cancer was a bump in the road and that I would return to my “normal” life when this disease passed like a storm out to sea. In these few days of contemplation, I realized that I was the sea just as I was on solid ground before this storm came in. This storm of cancer was not leaving me, it was in me and therefore up to me to incorporate it into my life.
Having cancer is a definable entity for a person. If one dies from cancer, we hear that he/she battled cancer and eventually the cancer won. If we survive, we are told that we are survivors, warriors and inspirations for others. I often laughed to myself when I was called an inspiration knowing that if I died I would have been called something else. The first few days out of the hospital, I defined and redefined myself more times than I care to remember. I knew that cancer would now be a constant part of my life and maybe there would be moments when I or others forgot I have cancer, but that most moments would be viewed from a different angle than they were mere months ago.
I was on medical leave from work with plenty of time to think about life. I knew that if I treated this experience as just an adventure with a beginning and end that it was a form of injustice. My friends and family did a lot to encourage me, my doctors did a lot to care for me, so now it was my role to carry on. If I was to be defined as an inspiration to others, than so be it; there are worse things to be called in life after all. And the alternative of being mourned was actually my worst nightmare knowing the despair it would cause to those that cared about me. I started to focus on my upcoming treatment and I needed to focus on approaching it with the same positive attitude I had done with the surgery. We all have this life…nothing else is a guarantee, so I determined that this continued battle must be won or at the very least, prolonged.
It was now the first week of December and I had my first appointment with the radiation oncologist to discuss the treatment plan for my recommended radiation. I was apprehensive about this treatment as it was never a focus in my mind. I returned to Georgetown for my appointment with Dr. C. I sat in the small waiting room in the radiation wing. The mood was set for waiting. There were small tables with half-finished puzzles, some card games, a water dispenser and a coffee maker. It was quite still and looking around the room, I wondered which cancer each person had. There were patients in wheel chairs, women with scarves covering their heads and one man across from me whom obviously had endured some form of brain surgery. I was tempted to reach out to him, but the mood was so sullen that I kept quiet so as not to rattle the rest of the herd.
I sat there reflecting on the past few weeks and my slow recovery up to this point. I had been on my own for almost two weeks now and my main focus was to regain my cognitive skills, mainly speaking and writing. Speech came back more quickly, but writing became more of a life-long battle of wrong tenses and mixed up words. Prior to surgery, my speech and writing were at the level one would expect from an attorney. Surgery impacted these abilities for me, and now I wondered what radiation and chemotherapy would take from me.
My name was called and I headed down the hallway and into a nondescript room where I waited some more. The room was filled with graphs and information about radiation, none of which spoke of the side effects, especially when applied to the human brain. Dr. C came into the room. He is a mild mannered person with a similar personality to Dr. K. We introduced ourselves and discussed the surgery and the need for radiation to attempt to delay any growth of the remaining tumor. His explanation of the process seemed pretty simple. I would be fitted for a stationary mask soon and then start radiation Monday thru Friday for six straight weeks. The aim was to affix the radiation beam towards my tumor, but for this general radiation approach I was told that the beam would not only hit the remaining cancer cells, but also a fair amount of my healthy brain cells as well.
I had read about other forms of radiation such as cyber knife and proton beams where the beam is more precisely focused on the area of cancer cells. While he was impressed that I researched this, Dr. C told me I am not a candidate for this approach, as he did not want to miss any possible extraneous cancer cells outside of the wedge of surgery. Basically, the full monty approach was my best bet of radiating all of the cancer cells, even if it meant that a large amount of my healthy brain cells would be radiated as well. I took the long walk home from this meeting knowing that days later I was to meet with an oncologist to discuss the chemotherapy process, which was designed to overlap radiation for maximum effect.
I just could not understand how radiating my entire brain would be of paramount benefit to me. The short and long term side effects scared the hell out of me. I had my brain operated on and this news that the following treatment could cause even more harm to cognition and normal life abilities left me feeling like I was moving forward and backwards at the same time. I was on a treadmill, but all of the controls were broken so I walked in place not knowing time or speed. As I was digesting the radiation plan, I was due for my first appointment with Dr. S in oncology.
As I waited for Dr. S in the oncology waiting room, I was convinced that I had waited in just about every waiting room at Georgetown Medical. This room was enormous compared to the other parts of the hospital I had already visited. There were people waiting to see their specialist and one thing I knew was that everyone was there due to cancer. I wondered how many others were told they need radiation and chemotherapy. I was pretty convinced it was all of us. While brain tumors are fairly rare, I felt a kindred spirit amongst us all as we all faced this demon disease. In my mind, it came down where they focused the laser and how we were to ingest our individual doses of chemotherapy, but in all, we were the same humans fighting for our lives.
My name was called and I met Dr. S’s nurse. Charlotte was kind and incredibly helpful throughout my treatment. We chatted a bit and then Dr. S came in for introductions and to tell me “the plan.” In basic terms, I would do chemotherapy for a week each month for 6 months or until my body couldn’t handle the toxic concoction any longer. I had pictured myself sitting in a chair and receiving an IV each day, but to my surprise, that was not the case. Almost all brain tumor patients receive one of a couple of different oral medications. I was told I would receive a drug called Temodar. At first, I thought, well this is not so bad. At least I don’t have to come to the Cancer Center each day to sit and wait for a drip bag to fill me with poison, but then it dawned on me that I would be physically poisoning myself with an oral tablet. I had a flashback to my Peace Corps days when I was given a vial of bleach to add to my drinking water to fend off amoebas and other unwanted parasites. The skull and cross bones on the vial reminded me of cleaning products we had under the kitchen sink when I was a child. A label and my parents told me NEVER to put them in my mouth, but there I was in Africa dropping bleach into my water as that was the “healthy” thing to do compared to the alternative. So if bleach was bad, I could only imagine what the hell was inside Temodar!
Dr. S could see the concern on my face. Hell, it must have been a neon sign reading, “HELP!” We talked some more and I did what I never did prior to the surgery…I asked her if I could get a second opinion. I was full of fear. Fear of this process and fear that I would insult the very practitioner that was there to help me. Who was I to doubt the specialists? I’m not quite sure what made me ask for a second opinion for the treatment, and not my surgery. I had full faith in Dr. K and I figured that the surgery was necessary to save my life. I had faith in Dr. C and Dr. S, but I saw chemotherapy and radiation as “options” that could or could not further help to kill the cancer in my brain.
I was full of questions: Was surgery enough?; do the benefits of laser beams and poison pills outweigh the potential of a healthy life?; will I live longer?; if I do, will it be quality? All of these and other questions swirled around in my head like a dust storm. My way of dusting myself off was to slow down the process and seek a second opinion. With the kind guidance from Dr. S and support from my family, I was able to seek a second opinion at Johns Hopkins University.
I sent my medical history and pathology report and waited for an appointment. Throughout the entire process I felt guilty. I felt like I was getting quotes from several construction companies to work on my home, yet this was my life and I tried to counter my guilt with the hope of a different opinion. In looking back, what is a second opinion? To me, it was an opportunity to suspend time and belief that I needed to go through a rigorous treatment. I was thinking that maybe Johns Hopkins would see something remarkably different then the trained physicians at Georgetown. Maybe the residual spot on my MRI was a spec of dust that just needed to be blown off the image. My original pathology report and thoughts from Georgetown physicians was that I had either a Grade II tumor or a Grade III tumor, the difference being that Grade III was much more aggressive and needed immediate treatment. I was fine with the ambiguity on paper, but in reality it would shape my treatment plan and of course my life.
The day arrived and Sarah came down from Boston to head to Johns Hopkins with me. After all, I was not permitted to drive and I could use some solid support and love. I was nervous and in a constant state of bewilderment; questioning and re-questioning my decision to be here. I then met Dr. G’s nurse practitioner and she was able to answer my questions in a way that made me feel like I was being wrapped in a warm blanket. Dr. G came in and with his calm demeanor and he laid out what he would recommend. He told me that in testing the tumor and creating a new pathology of the tumor, he was rather convinced that the tumor was a Grade III and not a Grade II. While this news solidified my treatment plan, it weakened me to the core.
I was hoping for a break. I already have cancer, can’t it be a less aggressive form?! The thing is, we often look for breaks when we feel we deserve them, but I am just a human being like the rest of us, so why should I get a break when there are millions in the world suffering from something as damning? We tend to hyper-focus on our own demise and wish others well without the same critical emotions. I was no different. I never complained about “why me”, because my own answer is “why not”. I did however want good news and in my mind, I had yet to receive the best of news.
Dr. G took his time and spoke with Sarah and me about my overall options, but everything came back to chemotherapy and radiation. My next chapter was written in pencil and I needed to own it, not by the stroke of a pen, but with a bold Sharpie and the same determination that got me to this point. Sarah and I left Johns Hopkins on that dreary day in Baltimore and as we drove back to DC, my fear and uncertainty slowly faded in the rear view mirror. My eyes now cast on the windshield showing the big picture of what I had to do. The windshield wipers cast away my tears of despair and self-loathing allowing me to see a more positive and determined road ahead.