answers, cancer, Cancer, change, children, chronic illness, cliches, crazy, death, deer in the headlights, denail, different, dissasociation, exhaustion, fate, fear, hope, hypochondriac, life, marriage, medical school, medical system, medical test, nature, ovarian cancer, pain, presence, questions, self depricating, soul, spirit, spirits
I will never forget the moment time stopped. It was 4:30 on a Monday afternoon. It was hot, early June. I was deep in thought as I walked my dog.
I was thinking about how to get my 11 year old fed and to his baseball game. I was worried he wouldn’t get a hit, and I wondered if his dad would be there to drive him home. I hated driving my boys home after a loss.
I was thinking about my 17 year old son. I was wondering if our upcoming trip to Rowan University might motivate him to get going on his college applications. I was trying to figure out how to get him, my smartest and most steadfast child, to apply himself in ways that might bring him sucess. I was wondering if my definition of sucess was different than his.
I was picturing my 20 year old. Away at sleepover camp, coaching baseball, he was in his own world. It was a world he loved. I understood the power of a talent show by the camp fire, late night chats in the cabin, nights off with fellow camp counselors and successes with campers. All of my children are sensitive, because it is an atribute I’ve stressed. My oldest though never needed my input. He understood others from his early months. I worried, would his innate sense of empathy hold him back in life. As a man, how could he merge his instincts with a career? And, how could I convince him that a 6 year college plan was not a great idea.
These were the thoughts running through my brain that day. Our brains are amazing. What else can multitask the way our brains do? Even my computer can’t engage in all of the commands required to ponder these issues at the same time. Tremendous…but deadly.
At 4:30 my cell phone rang. I don’t usually bring my cell phone on walks. If I do have it, I never answer it. I let it go to voicemail. Except not on this day. On this day I pulled it out of my pocket and looked at it. When I saw the caller ID I answered it. Why? I don’t know. I’ve had so many other calls from her that I didn’t answer. I knew calls from her were usually not imperative. They were calls I could put off for a day or two. They were calls telling me I was about to embark on another mystery that I had no desire, or energy to partake in.
The caller was my primary Dr. She’d been my Dr for years. I first went to see her because my stomach was a mess after 6 weeks of IV antibiotics. I watched her face as I told her I’d had a cavitated lesion in my upper right lung that turned out to be a pseudomonas infection and I knew —- she thought I was crazy. Certifiable. This is an illness only those with Cystic Fibrosis get. She dismissed me, told me to drink kefir and check in 6 weeks later. Why I went back to her I’ll never know, because in that moment her message was loud and clear: “You are a hypochondriac, I don’t believe you, and you are wasting my time.”
Maybe I went back to her because I agreed with her? The illness I had described was real but honestly, I had to be crazy, right? Obviously I had done something to deserve this infection and the IV antibiotics that followed, and whatever I had done had to be connected to the fact that I was crazy. Right???
She was my Dr. for 18 years and towards the end of our association she thanked me. She told me she’d seen things with me that had been hypotheticals in medical school. We laughed as we recounted the unusual infections and system break downs I’d dealt with over the years with her. I wish I knew what she thought at that time. I had two thoughts, both centered in the same premise: I was different. Was that difference a compliment or a slam? It depended on my mood, and the day, which I would answer.
At 4:30, sweating, chiding my dog to do her business, I pulled my phone out of my pocket and saw it was her. This was one of the rare moments I thought “gee, she really just cares and wants to check up on me”. It was with that thought I answered the call. Had I been in a self-deprecating mood I might not have answered. Given the terrible state of my marriage I can’t figure out why I wasn’t in a self deprecating mood. I wasn’t though, and I answered the phone.
She asked me how I was. I’d been to see her a few weeks before because I had severe stomach pain when I tried to eat. I wasn’t worried. I’d dealt with so many odd illnesses and I’d learned an important lesson: It takes Forever to get an accurate diagnosis when the illness/symptoms are rare. I’d also learned that I could beat whatever was thrown my way. I’d done so for 18 years, surviving a series of resistant infections and rare illnesses. I was Super Patient. This current symptom was a nuisance. It would require tests and waiting, and phone calls and test results, and more tests – a nuisance that would eventually be solved.
As listened to her say “how are you” I congratulated myself. “Go me” I thought. Primary Dr’s are busy people. Having one care so much about me that she would call just to check up on me, well that’s saying something, right? I’m a good, deserving, impactful person. I had to be to receive such a call. I babbled. If I was such a great person she must be interested in hearing my babbling, right? This 20 seconds is vague in my mind. What was to come is seared in my memory, as if she’d branded the words to come on my brain, just like the rancher sears his trademark into the hide of his cattle.
“I mean about the Ovarian Cancer”she said.
And time stood still.
Insurance, HMO networks, fax machines……she thought I knew. She was checking to make sure my gyn and I had a Plan. A Plan.
I stopped. I ignored my dog pulling on her leash. She eventually stopped. I looked into the woods behind my neighbors house and found myself in them. I stood among the trees, fallen and alive, on the blankets of dead leaves imbedded with deer foot prints, and it was beautiful. I’ve not spent any time in the woods behind my neighborhood and in that moment I wondered why. Why did I not walk through the paths, carved by wildlife. Why did I not walk through these trails, feeling the sun beat down in the gaps of the trees, warming my skin and my soul. Why did I not stand in the darkness of those spaces, those spaces in which the trees created a canopy, blocking the suns rays, but offering a cooling breeze. I had lived here for 12 years – how had I missed all of this?
In that moment I felt my eldest sons connection to the angst of life, and his indefatigable joy despite it. I felt my middle sons ambivalence. I understood that, despite his claims to the contrary, he had no path, no clear vision for his future, just fear. I saw this clearly, in this moment.
My youngest….the thought of him yanked me back to my phone, out of the fog I’d entered, back to the present moment. As I thought of him, as the visual of him flashed into my brain, I was jettisoned back to the sidewalk, where I stood, my dog patiently waiting for my next move, my Dr waiting for my next words.
I knew, in that moment, that there were no satisfying words for me to speak. I knew, I heard in her voice, I understood in a flash, that this was Bad. When I spoke though, I put all of that aside. I spoke from a place of life, perhaps denial and fear, but also hope. I said “Come on Doc, I’ve been through a lot of crazy shit and I’ve always been ok. Isn’t it possible this is the same?”
I believed those words when I spoke them. I thought I’m going to survive 18 years of medical mysteries only to die of a cancer everyone knows is deadly? Could I really be that common place? Was it really I who became one of “them”, the ones people talk about behind closed doors, in hushed tones, with words that say “I’m glad it was her so maybe it won’t be me”.
How can one person have this many thoughts in a matter of seconds? This question has tormented me over the years. It is this question I am determined to answer. It is the answer to this question that I believe merges the experience we are living; the present and the unknown, the universal, the spirit or soul.
I was snapped back into reality with her response. With a swoosh she pulled me out of the woods, away from my children, away from me, back to the call, the issue, my fate. Her words, like the phone call, are seared on my brain: “You can always hope for the best, but you need to prepare for the worse”.
She was my safety net. She was the one who always assured me I would be ok. She was the one who, when test results came back bad said “thank you – I never thought I’d see this. You are an interesting patient. Here’s how we treat this”. She was my rock. She got me through the pain of a car accident, depression, fear, chronic illnesses. And always she said “I got this”. Until this day.
People talk about the feeling of being punched in the stomach. That feeling when you lose your air, you can’t breath, panic sets in and you want to run, yet you are paralyzed. This is how I felt. I had no air with which to ask her “what next”, so I was relieved when she took over and told me what was next. I suppose she’d done this before, she knew that I couldn’t breath, I couldn’t think, I could not accept this as my life. Do they teach this in medical school? I don’t think so, I think she just knew me. She knew I was standing on the sidewalk, staring into space, seeing ……. black. Nothing but black.
I keep searching for better words. I can’t find them. All I have are the cliches written by others. Time slows down. Everything looks brighter. Heat is hotter, sweat drips faster, legs turn to jelly, my stomach clenched, suffocating me. None of this is adequate. Even as I write this I feel the fear seep into my stomach. In the middle of my body is a stone. The stone weighs me down. It is all I can think about. I feel it pressing on my groin, holding me in place, forcing my stillness. I feel it press into my diaphragm and compress my lungs. I feel my lungs give way to it, deflating, unable to inflate as they should. I feel the paralysis creep into my neck, cutting off my vocal chords, maybe even giggling as it travels up my spine into the recesses of my brain. I feel it all now, just as I did on that day.
When I speak about this I refer to the “deer in the headlights” experience. Is this what deer really feel? In this momentary paralysis, when they are inevitably hit by the oncoming car, what do they see? So they see the car barreling towards them, in the same way I saw those tumors exploding in my body, obliterating all that I am? Do they understand, as I did in that moment, that everything has changed. Death, injury, paralysis, recovery…none of it matters, because everything has changed.
I fear my words fall short. As I write I feel the breath escape me. I find my brain wandering, wallowing in fog and uncertainty, wanting anything other than reliving those moments. As I write this I am aware that without my brain, perhaps I am nothing? As my brain turns off this experience, tells me “stop writing this”, clouds over in exhaustion and fear, I wonder – am I gone when my brain is gone? Is this all there is?
Or, when my brain lets go, will I find myself in those woods, marveling in the nuances of nature, a cycle that seems unbelievable but persists, year after year – certainly after my body has gone.
So many questions. Can I find answers? I continue to look.