Something about cancer—in which the machine of our very existence, cellular reproduction, turns against us—makes us humans crazed. It is easy to see how that creates within our flawed selves irrationality, fanaticism, and desperation.
Should desperate people be commended for their bravery, for fighting against all odds, for leaving no stone unturned, for “raging against the dying of the light” until their absolute last breath, despite the debilitating consequences of treatment, for staying put in the face of a destructive hurricane and saying a symbolic “fuck you” to the cruel fates? Should I praise them in the same way I praise a woman who chooses to endure the pain of childbirth without an epidural—I screamed for an epidural the moment my contractions started—or a man who survives at sea with little food and water? Early on in my cancer journey, I vowed that I would be one of them—that I would forever rage against the dying of the light. Back then, maybe I would have considered seeking chemotherapy treatment days before my death and even drinking sludge. No longer.
I’ve had my moments of irrationality, fanaticism, and desperation, too, of course. Moments that I now view with some degree of embarrassment. I’ve paid a total of eighteen hundred dollars to see the famed integrative doctor Raymond Chang. I’ve spent thousands of dollars on supplements, herbs, and cannabis, based on Dr. Chang’s recommendations or on the Internet success story du jour, or whatever link someone shared on some forum. Other than vitamin D, CoQ10, and Cimetidine, all of the supplements now sit on my kitchen counter untouched. (I never seriously entertained Dr. Chang’s more drastic treatment proposals, such as hyperthermia and immunotherapy-like treatments available only in other countries.) At my last infusion, I told Dr. A.C. (who has always been okay with me taking supplements), that I’ve stopped taking all the things Dr. Chang recommended because ultimately I just don’t believe, and I can’t do something I don’t believe in. Dr. A.C. responded, “You don’t believe because at heart you are a scientist.” I think that was the greatest compliment Dr. A.C. could have paid me. I’ve always been skeptical of alternative treatments, but skepticism turned to disbelief when after my recurrence Dr. Chang recommended scorpion venom at six hundred dollars for a month’s supply. I went home and watched the Nightline story about scorpion venom, which basically called it snake oil.
The hope industrial complex won’t get another dime out of me. Or rather, the industrial complex that preys on the hopeful will get no more support from me.
Many advocates of alternative treatments make the common argument that anything is worth trying so long as no harm is done. This is the same basis upon which my own oncologist acquiesces to his patients doing alternative treatments—that so long as the treatments do not negatively impact organ function, he will allow them. He is skeptical, of course, but I suspect he recognizes that many of his patients crave control over their destinies (ha!) and must feel as if they are leaving no option unexplored. Even though he and other scientifically minded people understand that control is an illusion, I suppose that illusion can be important to the preservation of a dying patient’s sanity.
But a beating heart alone does not make for a life. So what was that old man searching for on that stretcher, and what would X want if he ever got to that point? I wonder. A miracle? A cure? More time? To prove his own resilience? What? Is there some base primal instinct compelling them to fight for survival at any cost, like a wild animal clawing savagely against its natural predator? Are they that afraid of death? Or do they love life that much? Or are they weighed down by the obligations of love that dictate they must live as long as possible under any circumstance for those who rely on them? What motivates them, fear or love, death or life? I’ve been pondering these questions deeply since that conversation with Tanya, trying to determine how I would answer them as I make decisions about whether and how to live what remains of my days.
I suspect that the old man and X, like many people, are more afraid of death than they are in love with life, and that an animalistic fear overrides whatever rational intelligence they possess; I would guess that they fear the unknown of what Shakespeare called the “undiscovered country,” the probable nothingness they believe lies beyond this life despite their wavering belief in God; they fear having the fire of their existence extinguished as if they had never been; they fear being small and irrelevant and forgotten. I’ve seen people only days from death proclaim to a mostly unbelieving audience on social media how they’re still going to beat their cancer. I read somewhere that those people who cling to such unrealistic hopes have egos that cannot fathom their own nonexistence, the very notion so incomprehensible, so incongruous with everything that has ever been their reality, so wrong that their minds must reject, reject, and reject until there can no longer be denial of what in fact is objective reality.
It seems I don’t have much of an ego (at least not the kind of ego that clings to its own existence)—my Freudian therapist would know better than I—for I don’t have such a powerful fear of what awaits in the undiscovered country, perhaps because I do believe there is another country and not just nothingness. I can’t explain to you why I believe; it is simply a matter of intuition and faith. For me, death waits like a doorway beckoning me to a new adventure, yet another on my long list of adventures, a new territory to explore and understand and from which my everlasting soul will learn and evolve.
I don’t want to mislead in suggesting that I don’t have an ego—we all do—a place in which our arrogance and conceit are born. My ego thrives on a belief in, and the need to continually cultivate, my inner strength and courage, my innate sense of grace and dignity that has heretofore allowed me to withstand the vicissitudes of life with a sometimes brutal self-honesty, and then to arise after shouting the expletives and shedding the tears, smiling and laughing at myself. I’ve never been a beauty, nor have I ever been the smartest person at school or work, but because of the circumstances of my life and the successes I have achieved despite those circumstances, I have always believed myself to be strong and resilient. I am good at looking directly at the harshness of life’s reality. I have faith and pride in my own spiritual invincibility.
I couldn’t say it better than Albert Camus, who wrote:
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger—something better, pushing right back.
For me, raging and raging like a wild, irrational beast, denying one’s own mortality, clinging to delusion and false hopes, pursuing treatment at the cost of living in the moment, sacrificing one’s quality of life for the sake of quantity, none of this is graceful or dignified, and all of it denies us our contemplative and evolved humanity; such acts do not cultivate an invincible spirit; such acts are not testaments to inner strength and fortitude. For me, true inner strength lies in facing death with serenity, in recognizing that death is not the enemy but simply an inevitable part of life.
Ever since I learned that my cancer had metastasized to my lungs and that I have a dim prognosis, more than one person has commented on a change in me, and on my resigned tone, as if I have accepted my death from this disease as a foregone conclusion, even if I don’t know when exactly that will be. More than one person has told me that I seem to have lost my traditional fierceness. Even Josh accuses me now of being a defeatist, that by conceding my fate, I am succumbing to the disease, that I have stopped fighting.
Josh and others have misinterpreted my actions. It is true—I have spent the last few months confronting my mortality, accepting the likelihood of my death from my cancer, trying to find peace with my destiny. But what Josh and others don’t understand is that with acceptance and peace, I have learned to live more fully and completely in the here and now, that I now live with a fierceness, passion, and love that I’ve never known. In what is the greatest irony of all,
I have come to realize that in accepting death, I am embracing life in all of its splendor, for the first time. Indeed, the part of me that believes in things happening for a reason believes that I am, through this cancer journey, meant to understand within the depths of my soul this paradox of death and life.
With that in mind, Josh and I planned a trip. On July 2, we will leave for Quito, the capital of Ecuador, where we will stay for less than two days, visiting the old colonial town (a UNESCO World Heritage Site), and on July 4, we will fly to an island in the Galápagos archipelago, where we will board a thirty-two-person yacht that will serve as our home for the next eight days. The yacht will motor from island to island by night, and by day we will hike, snorkel, and kayak in places that few have ever been, where prehistoric-looking animals roam free, having been largely undisturbed for centuries. Josh and I are looking at it as the trip of our lifetime together.
I don’t visit cancer support group sites very much anymore. I don’t research alternative treatments anymore. Alternative treatments require a fair amount of energy to research and to generally pursue, and that for me detracts from my ultimate objective of living in the moment. I don’t research conventional treatments much either these days. I’m honestly too busy living, too busy spending time with my family, too busy cooking, too busy pursuing a huge project that involves the expansion of our home. The time will come when I will have to focus once again on cancer, on clinical trials, on choosing new therapies, but the time is not now. Now, even as death lurks all around me, I live fully and completely while I am relatively healthy and pain-free; now I suck the marrow out of this glorious life I have been given.
That all being said, nothing is ever so simple, is it?
When I went to see Dr. A.C. to discuss the possibility of changing treatment (i.e., switching to something more aggressive that might actually shrink my tumors—as opposed to just maintaining the status quo—at the cost of my quality of life), without Josh present, I expressed to him my wishes. “I want to be clear that I am not one of those people who wants to cling to life by a fingernail, that I will always choose quality over quantity, that facing death with dignity and grace means more to me than adding days to my life on this planet,” I declared. But then I paused. I voiced next what I had not verbalized before. “But in telling you this, I feel like I am betraying my husband and little girls, that for them I should choose to live as long as possible at any cost to myself, that time with them is priceless.”
What will my children think of me one day? How will they judge me? Will they call me a defeatist, too? Will they resent me for not fighting harder, for not expending more energy on figuring out ways to extend my life? Would they admire me more as a woman who lived well in spite of her disease or would they respect me more if I were like that old man being wheeled into an oncologist’s office? Would I be setting a better example for them if I raged or if I went quietly into that good night? I don’t know the answers to these questions. And I don’t know whether those answers should really influence my decisions about my own life. All I know is that I love my daughters.
Hours after I’d expressed my sentiments to Dr. A.C., my sister came over to take the girls to Target to pick up a Mother’s Day gift for me. I did not go with them. My sister later recounted how she instructed Isabelle to pick a card for me (not that the child can yet read). Belle sat in the shopping cart and pointed to one card and one card alone, screaming that she chose that one. When they came home, my sister handed me the card adorned with a golden butterfly and told me that Isabelle alone had chosen it. Of course, it would be Isabelle who selected a card out of hundreds that had such meaning, as if she knew what thoughts I had been thinking, as if she knew what I had told my oncologist only hours earlier.
The card read, “From both of us, Mother, The memories we make—the laughter we share—These moments mean more when our mother is there.” It seems Isabelle wants me to fight harder and for me to be here for as long as I possibly can. I just don’t know if I can do that…
27
Dreams Reborn
Nothing says “commitment to living” quite like taking out a mortgage. At the beginning of summer 2015, Josh and I had some very exciting news. And no, unfortunately, it was not the shocking discovery that the scans showing mets in my lungs were in fact someone else’s—I wish. The news was that Josh and I signed a contract to purchase the apartment next door for the purpose of combining it with our current apartment to create a 2,529-square-foot abode that will likely feature four and a half bedrooms (two of which will be master bedrooms) and three and a half baths. For those of you who are not aware of the nature of New York City real estate, the opportunity to purchase a neighboring apartment and create a proper living space is a rare occurrence. That opportunity is even more unique in a well-constructed and landmarked building, as is the case here. The influx of money from foreign investors who find New York real estate to be a safer depository for their wealth than their home countries’ banking systems has driven real estate prices to levels that are unfathomable to those who do not live in this city. It has also pushed purchasers out of Manhattan and into the less expensive surrounding boroughs, particularly Brooklyn (which is where we live).
Already feeling the need for more space with two little girls, Josh and I were daydreaming about the possibility of buying a neighbor’s apartment right around the time I was diagnosed, as unlikely as that was (although I had not asked Josh to lay precise odds on just how unlikely). But what was improbable two years ago has come to pass—our neighbors have outgrown their apartment and are selling their two-bedroom home to us.
Even though I had had this on my mind for more than two years, when I learned that the neighbors were going to sell their place, the thought of purchasing the apartment didn’t cross my mind. Instead, I thought, Oh no, Mia and Belle will lose another playmate in the building. I didn’t even think to say anything to Josh for an entire week. But when I did tell him, “H and T are selling and moving,” Josh’s eyes opened wide, and he asked excitedly, “Are you serious? This is our chance!” I looked at him blankly, not understanding what he was saying.
There is a condition known as chemo brain. Any patient who has been subjected to prolonged infusions of chemotherapy knows it well. Chalk my momentary incomprehension up to that.
In the time it took for me to understand what Josh was saying, and before I could allow myself to envision a gloriously expanded apartment, all the horrible complications that cancer might bring to bear on an ambitious construction project like this flashed through my mind. As much as I can push cancer to the recesses of my consciousness, especially when I’m on vacation or otherwise truly living in the moment, any action or consideration that requires even the slightest contemplation of the future is always burdened by the movements and behavior of my cancer and its impact on my mind and body.
What if in the middle of renovations, I needed surgery and could not oversee the project (because it would be me, and not Josh, who would be wearing the hard hat). What if, worse yet, I died before the new apartment was done? How would Josh, who is so atrocious about the finer details of life, manage? What if we had to move out of our apartment? What about the financial obligations, and what if we needed the money for some surgery or other treatment not covered by insurance? What if…what if…what if…
I instantly also saw the wonderful potential of what Josh was proposing—a phenomenal investment, an apartment where the girls would have their own rooms (because I was sure at some point they would tire of sharing their full-size bed), a place big enough to accommodate my parents and in-laws and others who can and will help me, Josh, and the girls as I become sicker and after I die, a place big enough to accommodate a hospice bed when the time comes (as I had often wondered whether I would be able to spend my last days in this home that I love given the space constraints). Four-bedroom apartments with that kind of square footage are highly coveted commoditie
s in New York City, and if constructed well, ours would be a wonderful place in which the girls would grow and thrive, a place that could be passed down from generation to generation, a labor of love by me, and the single greatest physical and tangible legacy I could leave for my children and husband. For both Josh and me, it would represent the realization of an ambitious dream that harkens back to the precancer days and, despite the cancer, evidence that life can and does go on after an appalling diagnosis, even an incurable one; it would be a powerful symbolic affirmation of life and living and optimism for a future that is bigger than me.
But what about all the what-ifs? My mind went into problem-solving mode. We consulted with our financial advisers and pored over detailed cash-flow analyses. We spoke to architects, bankers, lawyers, Realtors, building representatives, and others. Based on those many conversations, we grew comfortable that a combination was doable from every perspective, including design and construction, legality, and financing (including the assurance that we would not need to move out of our current apartment since nearly all of the work would be done in the other apartment and would be completed before any walls were torn down between the two units).
But with respect to my paramount concern—that the cancer might rob me of the ability to oversee this project—I spoke to my brother and sister. They both instantly loved the idea; among all the obvious benefits, they believed that a project like this would keep me going. More practically, my sister is an architect by training, and I knew, and she confirmed, that if I were not able to complete the oversight of this project, she would be ready, willing, and able to step in. Of course, so much of the decision making would come initially, during the design and planning phase (especially when the right professionals were hired), and I have every intention of being around to set the plans in place. And then it will just be a matter of those professionals executing based on the plans.
The Unwinding of the Miracle Page 18
