Part I: Non-Consensual Cancer
Growing up, one of my heroes was Sir Ernest Shackleton. He was a polar explorer at the turn of the century who led an expedition straight south to explore Antarctica in his ship, aptly named The Endurance, with a motley crew of burly Englishmen wrapped in layers of wool, icicles hanging from their thick beards. After their ship was stuck in ice and capsized, Shackleton had to abandon his exploration mission and lead his crew through the harsh Antarctic conditions to safety. To his men, Shackleton was a true leader, heroic, humble and selfless.
I have not thought much about Shackleton since the report I did on him in third grade, though. Fifteen years later, while my life is consumed with the constants of living with cancer and being in and out of the hospital, brawny Antarctic ice adventure heroes do not currently impress me...
Everything my medical team does to treat my cancer requires written consent. My doctors diligently present their recommendations, the protocols and research studies, detailing the course of treatment, side effects, and complications. But none of it can happen until my signature is on that piece of paper.
My doctors sit in two chairs at the end of my hospital bed, in my dimly lit room on Six North. My mother is in another chair closer to the window. It's dusk and the shade is open, letting in the blue and yellow glow of the city at night. Outside crowds of salary men and research assistants wait for buses, evading the cold Boston wind and each other with their scarves and headphones. The room is quite small but has a TV and PS2, a long cushioned bench underneath the window that doubles as a bed for a visitor, and even a mini fridge. All these amenities are not a comfort to me right away -- more of a reminder that this is the kind of hospital room I will not leave for weeks.
This was my condition at the time of consent:
I was still woozy from the anesthesia drugs from my bone marrow biopsy that morning. My doctors have just informed me of the results, which were that the last round of chemotherapy did not work. Now it was time to talk about what to do next.
I am lucky to be treated by some the best doctors in the world. They were ready and waiting with a new course of action as soon as they knew the results. In their hands they had a stack of papers, a new protocol ready for my signature. Their "Plan B." And I should say up front that I fully trust my doctors. When they recommend any treatment I believe that it is my best option for overcoming this disease. But there is a dark reality to consenting to cancer treatment. The truth of it is, I have never felt like I had a choice at all.
The doctors recommend a stem cell transplant. Before I can sign the protocol, the doctor must go through all the possible outcomes, all the risks involved, all the side effects and potentially adverse effects of every medication and treatment I will encounter. You can imagine that these conversations are often quite sobering.
This is what I get to consent to on that day:
The plan is that I will undergo ten days of conditioning. I will receive higher doses of chemotherapy than I have ever encountered before, as well as several sessions of full body radiation. These treatments are guaranteed to give me nausea and vomiting. There will be pain and fatigue. Mouth sores. It will be likely that I will be unable to eat and so I will receive Parenteral nutrition through my IV. I will likely be on a PCA to manage my pain, basically a constant flow of intravenous morphine. These treatments also present the risk of countless adverse events. Things like seizures, anaphylaxis, infertility, thrombosis, liver failure, some crazy thing where your heart could stop immediately from one of the chemotherapy drugs, oh right, and also the risk of developing other cancers later in life.
My willful acceptance of this poison, of course, is to completely destroy not only any cancerous cells left in my blood, but the entirety of my bone marrow itself. I will then receive three infusions of stem cells taken from the umbilical cords three different babies. Over the course of the next month, in some inconceivable way, these stem cells will enter my blood stream. They with then find their way into my bones where they will duke it out until one emerges victorious and engrafts into my bones, and to finally resume the creation of functioning blood cells in my body. Until then I will wait in a stagnant state somewhere inside the shell of a broken, sick, exhausted body. I will be kept alive by blood transfusions and IV nutrition, hoping that one day the lab results will show that some new white blood cells, with the DNA of some anonymous beefy baby, have miraculously grown in to start cleaning up the mess. That's the theoretical idea. They also have to tell you somewhat unconvincingly that it works about half the time.
After hearing all this, of course I immediately respond, "Yes! Absolutely! Sign me up!"
I joke, but all the same, what is my other option? The leukemia returns and consumes my body from within in a few months. It's tough. Agreeing to treatment that will knowingly ravage you, and harm you, bring you close to death itself. How do you agree to that? If you want a chance to live you have to. No one deserves to have to face that decision. If you even want to call it a decision.
Part II: Overcoming My Fear, Making My Choice
In the weeks leading up to my transplant I felt completely powerless and afraid. Thoughts of the complications, the statistics, all the suffering to come, rolled around in the shadows of my mind. I had been dealing with cancer treatments for years now. I always consented to the treatments without too much thought. I always felt ready to endure them. But after a relapse and another failed protocol and more and more unpleasant reactions to increasingly toxic forms of chemotherapy, I reflected on my "decision" to consent to the transplant. I reflected somberly and often as I waited. So much of it scared me, and I began asking myself if I had just signed my life away. I was desperate for any confirmation that the transplant process would work. That I hadn't just signed up for an extra few months of intense suffering, only for more bad news at the end. But that confirmation does not exist.
But then I happened to remember a detail of Shackleton's adventure that helped me. Before he set out on his mission, he put out a tiny add in the newspaper to recruit his crew.
His informed consent read candidly:
MEN WANTED for hazardous journey, small wages, bitter cold, long months of complete darkness, constant danger, safe return doubtful, honor and recognition in case of success.
I read that and laughed. What kind of mad man would respond to that absurdity? Then I realized that I just had. I was that mad man. One of those burly bearded men with icicles hanging from their noses, pulling their lifeboats across the frozen glaciers for months and a never ending white wilderness, day after day until finally they found that tiny South Georgia whaling station. I felt proud to be with them. I felt strong.
So I take the pen and sign my name and usually I admire the elegance of my signature next to those of my doctors. It looks strong, even more direct and confident than theirs. I hand the papers back and that is that.
When day zero comes around, I take one last moment to think about my fear. The fears of what I will definitely experience, the fears of what I might experience and the fears of what I might not experience. And then, finally I do have a choice to make. I choose to take a deep breath. I choose to forget my fear. I choose to accept what happens, and only when it happens. I choose day plus one, and then day plus two, day plus three...