The 4th Cancerversary
I haven’t written a blog in a few months. Each time I tried, I lost my motivation, the wind knocked out of my sails faster than I could type a title. I blamed it on chemo brain, which is no joke. My thoughts are often a jumbled mess, which doesn’t translate to writing something profound or even understandable. And since I am mostly chronicling this cancer journey, quite frankly, the subject matter got tedious and repetitious. I figured if I was getting depressed reading it, so was everybody else. Sometimes, I have to press the pause button, give myself some grace. But I have an occasion to mark, and this is the best way I know to do it.
Today is my 4th cancerversary. Yes, it is a made-up word, coined to commemorate another year of survival in the ongoing battle with a fierce foe, one hell-bent on killing me. There will be no fanfare, no flowers or balloons or candlelit dinners. I’ve been told that alcohol and chemo don’t mix, so there will be no champagne toast either. While the rest of America gears up for the Independence Day holiday, calculating how many hot dogs to toss on the grill and seeking out the best place from which to view the fireworks. I will be quietly celebrating, looking back at how far I have traveled, while recognizing the uncertain road that lies ahead. It is an interesting place to be, where gratitude and fear intersect, each vying for control of my thoughts and emotions.
The diagnosis, Stage IV Ovarian Cancer, came on a sunny summer afternoon. I knew that I was sick; I would have had to have been deaf not to hear the symphony of troubling symptoms performing a loud concert in my body. And there were overt physical changes which were hard to ignore. I had undergone six months of tests and appointments, none of which were conclusive. And yet now that I understand the nature of this disease, I recognize that the indications were typical, and sadly, misunderstood. Like so many women of a certain age, I was told that it was part of growing older, a hormonal reaction to aging. In the richest, most advanced country in the world, where hospitals and clinics with their ambient lighting and tree-laden atriums stand as a testament to medical marvels, I fell through the cracks of a system that isn’t nearly as infallible as we are led to believe. That in itself was a tragedy as it has been for so many women who share this illness.
I was angry at first, but quite frankly, I can’t blame the doctors: there is no diagnostic test for Ovarian Cancer, and with only a tiny fraction of the research money dedicated to women’s health, it will be a long time before one is discovered. So for somebody like me, who had none of the risk factors and had always been healthy, it wasn’t even a consideration. The ultimate pronouncement, along with a rather dismal prognosis, was delivered with such a matter-of-fact emotionless tone that it could have been the recitation of the specials menu at a familiar restaurant. Not everyone with a medical degree takes the elective course in empathy or is skilled in delivering bad news. And although there should be, there are no certification questions about the human condition that accompanies the physical one. I sat stone still, trying to hold back the tears while I processed the words. These are the “fight or flight” moments, although neither course of action would have given me comfort. I left the office, still in shock, wondering if my doctor of ten years had really just casually bid me goodbye and told me to “have a good 4th of July,” only minutes after advising me to get my affairs in order while emphasizing that my days on this earth were limited. It’s funny how the details of such life-changing moments are etched in memory.
Fortunately, I have since found a caring team of medical professionals who have guided me though the myriad of procedures that are part of the treatment process. My dance card is filled with lots of poking and prodding, but just for the heck of it, I made a quick inventory. I have endured two paracentesis drains, ten scans, a port insertion, three biopsies, two ultrasounds, three surgeries, twenty-nine chemo infusions (some more dose-dense than others), fifteen months on two different PARP inhibitors, two platelet transfusions, forty-two shots in the belly, five fancy devices, designed to boost my white blood count, three echocardiograms and a stress test. I've had mouth sores, bone pain, and peripheral neuropathy. And there have been other surprises: I developed a nasty blood clot in my jugular vein, which necessitated two years of daily blood thinners. I have had more needle sticks and medical appointments than most people have undergone in their entire lifetime. Of course, none of this is free: my provider charges are now in the millions and the copays have drained my savings like sands through the hourglass. And yes, my vanity has been tested: I have been completely bald twice and currently sport locks so thin I look like Gollum, the Hobbit. (As an aside, I think I have gone through thirty “cranial prosthetics.” That’s medical-speak for a wig.) But I have also taken many bumpy rides on the emotional roller coaster. I’ve cried buckets of tears, fallen to my knees in despair, and questioned every decision I have ever made. My heart has been broken, shattered into millions of pieces, and like Humpty Dumpty, it can't be put together again. Some days, the pain and worry feel like a permanent condition. Thankfully, I’ve discovered the logic-defying peace of prayer, especially on sleepless nights. Over the past 48 months, I have only shown no evidence of disease two times, and that was a short-lived bit of rejoicing. You see, the stem cells of Ovarian Cancer are resistant, often morphing into something indestructible. Recurrence is far too common. The oncology folks are among the kindest people on the planet, no joke, but even they avoid conversations about realistic expectations, fearing that they might dash any bit of hope. Instead, they use terms like chronic, which doesn’t carry as sinister a connotation. The word terminal is reserved for public transportation stations.
Over the past four years, I have come to understand there are two opposite worlds in which humans reside: one is where everything is possible and life’s possibilities are boundless. Here, we feel safe and understood. We make plans, resolutions and believe in the magic of amazing outcomes. Our relationships flourish and moments are filled with laughter. In this land, we see setbacks as temporary, always looking for the silver lining in every cloud. We believe in our own abilities to control our own destiny. Optimism springs eternal as we hold firmly to the belief that tomorrow will be even better than today.
However, in the other world, life is fragile, the ground upon which you stand as unstable as quick sand. You learn that you can no longer trust your body or yourself as your good health crumbles away. Instead of fun and adventure, your calendar is marked with dates for medical stuff; and life is punctuated by official reports of your condition. Your emotions are clouded by fear, sadness, anger, and yet, you are afraid to share your raw feelings because you know friends and family have grown weary of your physical and emotional neediness. Some of them simply turn away, which compounds the sense of loss. Nobody willingly accepts a ticket to this less desirable world, and although you hope the visit is only temporary, for some, it becomes a permanent home.
The two examples might be rather simplistic, but accurate. This is the difference between the place of wellness and the place of sickness. And you don’t appreciate the former until through circumstance you are forced to live in the latter. That’s certainly true about many of life’s challenges.
At this point, I should end with an upbeat conclusion, maybe include a few inspiring bits and pieces of wisdom that I have gathered during the past four years, which have been the most difficult of my life. I could write about strength and optimism in the face of adversity. Most folks like that kind of feel-good moment. Or I could try the humorous approach, throwing in a funny story about wig shopping on Amazon, usually with surprising results or describing how to avoid looking like an alien when you have no eyebrows or hair. Perhaps I should list my top ten hints for becoming the favorite patient at the infusion center, including a recipe for cookies that the nurses are bound to love. But not today. This day is about being real and honest, to authentically honor what it means to me.
So I will leave you with these parting thoughts. We have been taught to embrace this moment, recognize the power of now, the proverbial gift of the present. Happiness is believed to be tied to how well we think things are going, the periodic progress checks becoming the report cards of a successful life. And being sick, with its consuming uncertainty, can make that determination difficult. Insecurity and self-doubt damage the optimism barometer, which tells us that everything will be just fine.
And yes, I understand that life is meant to be lived going forward, as we are cautioned not to dwell in the past. But let’s face it: we all live there to a certain extent. We tell stories of our adventures and mishaps, lovingly cling to old photos, reminisce about places where we once lived or visited. What has preceded this moment becomes an integral part of who we are. So yes, looking back at the road we have traveled acknowledges the journey. And perhaps that is what this cancerversary is about for me. No doubt I have changed over the past four years because experience always has a transformative power. I am striving to be grateful for every moment of this life that God has given me. I am learning to honor the strength and resilience I didn’t know I had. I am trying to be kinder to myself, especially in my weakest moments. And perhaps most importantly, I am recognizing that I truly am a survivor. It is a label that I have most certainly earned.
Tomorrow, while most folks are celebrating the 4th of July, I will be at the hospital getting a blood transfusion. That won't be as much fun, but it is life-saving. I figure that's the best cancerversary gift I could be given.