After two weeks of meeting with doctors, doing additional MRIs, researching and ingesting just about everything I could on the topic of brain tumors, the day arrived. Before I go into the events of that day, I wanted to give a cautionary tale towards researching and ingestion information from the internet. My caution comes from a bit of experience, and is quite simple. “All things in moderation.” An internet search for how to roast garlic comes with a myriad of opinions and experiences on what worked for others. You might like your garlic roasted slightly more or less than the advice from those on the internet, which you can decide for yourself. Great…now you have a recipe for roasted garlic and you can eat it all day, every day, but please pack some gum or mints on you too. Internet searching for “brain tumor” is quite different. A large amount of the information you will ingest probably doesn’t apply to you. It would be like a search for “roasted garlic” to eventually read about sautéed carrots. It is somewhat related in that you are cooking veggies, but really quite different when you dissect the elements of the result. I dare not tell you not to search “brain tumor” on the internet, I just caution you, that you might end up unhelpful or wrong information on how to sauté carrots.
Like most everything in this journey, the day did not appear on my calendar with a mental plan of attack, it came with a phone call to my office phone at 2:30PM. The woman’s voice on the other line told me that there is an opening in surgery tomorrow at 5:30AM, and it wasn’t a matter of whether I wanted the appointment, it was more of a courtesy call that you get when your car is ready after repairs. “Your doctor is ready to perform surgery…we will see you in the morning.”
Even if I wanted to argue, back out, or retort, there was nothing to say but “I will be there in the morning.” I sat in my office, looking around in a sense of wonder. I had never really taken a good look at the walls around me and the space I called home away from home for years, but that day, it was different. Through my headache and blurred vision, I saw more clearly then before. I was a normal cog in the wheel of a law firm. My office…this office, had a magnetic removable plaque on the door that my name currently occupied. Will I see this office again? Why the hell was that a concern? It was just weeks earlier when I was planning to leave this office and move to Brussels to sit in a different office, yet do the same thing, yet that was no longer and option, and seemed like a distant dream. This brain tumor was impacting “my plans” and little did I know at the time that my idea of long term plans would also be impacted.
Life tempts us into “the big picture” and “down the road”, but even though I am not a religious person, I do think there is some twisted truth and humor to the saying that, “if you want to make god laugh, tell it your plans.” It is good to plan. I think it delivers hope and a feeling of purpose. I am not saying that I no longer plan. I plan plenty. I just make sure those plans are not rigid and steeped so long that they become bitter yearnings. Part of control is planning, so I do plan, but I also have learned to live while planning. I have learned that waiting is an advantage that healthy people have, and I have learned that we are not as healthy as we might think or know. So, I plan, but in that moment where I saw “my plans” slipping from my grasp due to cancer, I grabbed what I could. The thing I grabbed was focus and a plan to do everything possible to save my own life in the here and now.
The office was a sense of normalcy. For the first time, it gave me comfort as I looked around the room for what seemed to be hours. In real time, it had been about 5 minutes, but when faced with brain surgery, one tends to drag things out as long as possible.
Reality hit me and I realized I had less than seventeen hours before I was to meet Dr. K in the OR. I called Sarah and my mom to tell them that it was happening so quickly, but that I would be just fine. Next thing I know, they’re sharing a flight to DC that night so they could be there for my surgery in the morning. My heart hurt. Beyond the physical symptoms I was managing, trying to manage my guilt of what I was putting my loved ones through was almost the death of me. I did not feel bad for myself, but I felt horrible for them. They were helpless; they could do little more than watch, wait, support, and get prepared for whatever may come. On top of my self-riddled guilt, that day was Sarah’s birthday. I had no present, no celebration; in fact, I had quite the opposite. I still did not understand her magnitude for love…I was no great prize prior to my diagnosis, so why she was still with me was beyond confounding, yet it eventually helped me to define love as this unconditional bond.
I opened my office door, walked into the hall and went on a brief journey to say goodbye to my friends at the firm. There was something in everyone’s eyes that day. It could not be fear, for I was on this solo journey and there was no need for fear in their worlds. What it turned out to be was a portal into a world where they realized that this can happen to anyone…could happen to them. The consternation in their eyes and the pity in the voices washed over me with invisible effect. I was impenetrable, I was gearing up for battle and I needed to go home and get ready for the event of my life.
I left the office and headed home. I was in no hurry and I walked from work, passing the zoo and up the hill to my apartment. It was the same walk I made two weeks ago, but this time I had a mission; despair be damned. I walked into the lobby and there were Kalima and Dorcas. They were my apartment managers, and they knew my situation. Dorcas and I formed a bond throughout my residency there due to her kind, patient, and joyful demeanor. I am drawn to this in humans. As I entered the building, it must have been written on a big sign above my head as they both gave me hugs. It is somewhat funny that in situations such as this, strangers become friends and friends become supporters, and supporters become pillars to hold onto when it is impossible to stand.
Dorcas and Kalima helped me through more than they will ever know and I am forever grateful. I walked up the stairs and went into my apartment. Shadow got the brunt of my raw emotion as I picked him up and squeezed him like a child’s teddy bear. Shadow was often the best confidant. He listened with his eyes and knew when I needed love and help. Intuition spans the spectrum of beings, and he knew that I knew that he knew.
There was no time to cry anymore. There was only time to get busy living and I spent the rest of that evening doing what I could to maintain some sense of control. I sat down at my computer and finally hammered out the long-awaited email to my friends and loved ones, some of whom already knew:
Hello friends and family,
I am going to tell you a little story, but I have already given away the ending…2012 is going to be an awesome year! I have had the opportunity to speak with a few of you lately and I appreciate all of your love and support over the past week or so. For those of you that I have not had a chance to talk to, I look forward to talking with you very soon, and I apologize for not talking with you about this individually…at this point technology is my friend ;). For those of you that don’t know, I have a brain tumor, which I was diagnosed with two weeks ago today. I had been having problems with headaches and with my vision, so I started a journey of doctors, which led me to my current doctor, Dr. K (Neurosurgeon at Georgetown Hospital), and I cannot wait to go back and thank each of my doctors one by one, for the care and efforts that they have gone through in order to make a quick diagnosis…I am one of the luckiest people I know.
I have a grade 2 glioma on the left side of my parietal lobe. My “neighbor” is not very big, but unfortunately neither is my brain ;). Humor has proven to be a confidante throughout this, so I hope the smiles are more abundant than the sad faces. I have gone through brain scans, functional MRIs, brain labs, and the team of surgeons has a great plan to try and remove my neighbor in its entirety. The position rests on part of my brain the controls the movement of the right side of my body. Due to the location and risk, I will be attending this surgery partially awake…trust me, it sounds worse than it is. I will be under anesthesia throughout the surgery…sedated during the first part of surgery to get to my brain, but will be awake during the resection part of the surgery (with local anesthesia), which allows the surgeons to work in a safer environment…I will do whatever they want me to if it makes for a “safer environment.”
They will first take a biopsy of the tumor, which sits on the surface of my brain, and then take out as much of the tumor as they safely can…I do not have any other tumors that they can see, nor do I have any structural damage to my brain. I feel extremely lucky to be in the condition I am, and Dr. K is confident in his abilities and possibilities of getting this out. During the biopsy, a pathologist will read the tumor to determine if it is benign or malignant, which he should know during the surgery, and then a few days later some other test results will be available for more information about the tumor itself. I was told that the surgery would take place some time before Thanksgiving, and actually received a call today to let me know that my surgery will be tomorrow. I go in at 5:30AM tomorrow and will have my mom and Sarah by my side. I know a couple of you wanted to be here, but please know I am in good hands and have my mom (a nurse of 35+ years, and amazing mom to me for 33+) and Sarah (a nurse of almost a year, and the love of my life) with me throughout this, so stay where you’re at and know that everyone is with me in spirit. If anyone is crazy enough to want to come to DC (or potentially Boston/Maine/Vermont) during the winter, then I am accepting all visitor application throughout December, so let’s talk. I look forward to getting up to Vermont to see my brother and sister-in-laws new place!
My recovery depends on my surgery. If there are no complications, then it should be four hours and then into ICU. My doctor painted a nice picture for me in saying that if all goes well, I will be in the hospital for a couple of days and will need to have a follow up in a week, and might even be free to do some ground travel for the holidays, as if it is a pleasure to drive the Northeast corridor during the holiday season. My mom and Sarah will be here for the surgery and will be staying with me for the next week (depending on recovery goals). I am not sure what recovery will entail, and no one is at this point. This has been a step by step process and I will know much more when I get out of surgery and wake up. So for now…let me guess…you are thinking, “I have no idea what to say or do”?? I am in the same boat floating on the sea of surreal-ness…let’s just each grab an oar and head for calmer waters…2012 is gonna be an awesome year!
I know there might be some “what…, why…, how…, when…”…I ask them a lot and have found the answers to yield more questions than answers. I am at peace with this, and am looking forward to this challenge. I am in good hands, not just with the medical team, but through my family and friends…I wish I was sending each of you different news, but I am more than happy to know that I have each of you to share both good and bad with. Sarah has each of your email addresses and will be sending you an email once I get out of surgery and into recovery…please do me a favor…I love Sarah and need her to be as sane as possible throughout this process, so I promise she will keep you posted ;). I appreciate all the love, prayers, happy dances, positive vibes and thoughts…you are all with me on this ride and this team is just too strong not to win. I will call you all very soon. Don’t forget to smile…it’s contagious.
It is somewhat humorous to look back at this email, doused with what would come to be inaccuracies. If it were only so easy as to relate what I was told and have that be the truth. This was another lesson in “the plan.” As I mentioned, I realize now that I can plan, and rather enjoy it, but I always make room for the universe to allow for delays, deviations, and straight out cancellation…I can only control what I can control, nothing more.
Sarah and my mom were flying in at 9pm, so I prepared my place meant for one to accommodate the extra company. What happened next was the first grasp I had at a plan. My world was spinning and I felt I couldn’t control anything that was happening, but I knew there was one thing.
I looked into the mirror…hard. I looked at my face, my head, as if I could peer into my skull and look right into my tumor. I laughed and cried, I felt power and dismay, I felt anger and peace. This was my world, a world ripe with raw ever-changing emotions that always seemed to cross like trains in the night. I never knew if I was hopeful, scared, determined, doomed…I was a little of it all. I smiled at myself, I took out my beard trimmer and set to level to 0 and shaved my head.
There was no way I was going to let anyone take that power away from me. It was my first stand in my fight with cancer and it was a premonition for things to come. I will control what I can, but in the end, I was as malleable as a piece of clay, subject to the hand of a surgeon and the will of the universe.
I stood looking into the mirror with simultaneous tears of pain, sorrow and even joy. When you look into a mirror long enough, one either finds small imperfections or one sees the beauty of the whole…this was my moment of beauty. Beauty was not found in my features or the irregular shape of my newly fresh-shaven head; rather, it was found in my love for myself regardless of the outcome.
This was one of my first lessons-learned. I learned what it is to be me, not the projected me, but me…the soul that stares into itself knowing the cracks, faults, guilt, and failures are what make me that person I am. It was a message that allowing those imperfections to show, I was liberated. I have faults, but this is not my fault. This was a big distinction for us when we often look at ourselves on the surface and we forget that our soul is the roots to the flowers that we present to the world.
I stared and procrastinated for as long as I could. As much as I wanted to see Sarah and my mom, I dread the notion that I was bringing them pain. I ordered my Car2Go and made my way to the airport.
I planned to be early, park the car and go in to greet my mom and Sarah, but I was running late…it must have been the epiphanies I was having in front of the mirror. I pulled the car up to Arrivals and within minutes I saw my personal nursing corps. I smiled, they smiled, we all cried, and we all pulled ourselves together for a quiet ride back to my apartment. I was wearing a beanie, not only to conceal my new bald fashion design, but also in protection for those that I thought might need protecting. Halfway home, I slid the beanie off my head and again, I smiled. They knew what I had done and why I did it…I was preparing for battle and they were too.
With an apartment the size of most closets, we managed to shimmy in an air mattress and hunker down for the evening. I remember lying there in almost a chuckle, thinking how anyone is supposed to sleep knowing that hours from now I would be in brain surgery. I closed my eyes for seemed like only a moment and then I heard a terrible sound.