The Sky is Falling….Chicken Little
In November, 2011, I was diagnosed with a rare form of non-Hodgkins Lymphoma called Primary Mediastinal Large B-Cell Lymphoma. I was 22 weeks pregnant with my son at the time of my diagnosis.
I had virtually no family history of cancer. I came from a hearty line of tough people with long life spans. So, to say that I was simply shocked would be an enormous understatement. It felt like my world had exploded all around me, leaving me with nothing but a shoddy, diseased, inhospitable body that had betrayed me and from which, I couldn’t escape.
I was also a little pissed. I had treated my body well over the years. I had been a healthy eater, exercised and rarely over-indulged in anything. I’d never been a smoker, rarely drank to excess and I’d said no to drugs….even when I kind of wanted to say yes. I had avoided all of the things in life that were supposed to cause this kind of thing to happen and yet….I still had cancer.
When I was first diagnosed, I couldn’t help but think about all the people I knew who were much more likely candidates for the disease than I.
There was my now, ex, step-mom, who treated her body like a dumpster….she chain smoked, secretly snorted various prescription medications and the only thing she drank that wasn’t an alcoholic beverage, was soda.
There was her sister who ate hamburgers and drank diet Coke for breakfast, lunch and dinner and never stubbed out a Virginia Slim without first using it to light another.
There was my crazy maternal grandmother who I adored and who lived well into her late 70’s. She’d grown-up on a farm in Tennessee where they grew tobacco and cotton and she’d been smoking unfiltered cigarettes since she was nine. She cooked hearty, southern foods that were served dripping in butter and fat and drank black coffee all day long. She’d been an outed alcoholic for many years and then a secret alcoholic….at least secret to me….long into old age. When she died of a massive stroke….not suprising all things considered….in her late 70’s, it was the first she’d had any serious health complications….granted it was also the last.
“So, why me then?!” I would find myself mumbling in the beginning. “This shouldn’t be happening to me! I’ve done everything right.”
Then, I mistakenly got off the elevator for an appointment at the hospital where I was treating and found myself on the Pediatric Oncology floor. It was heartbreaking to see all the worried, desperate parents clutching and comforting their very sick little one’s.
I never said “why me” again.
I got cancer because I just did and if whether or not I deserved it was really worth considering…..which of course, it was not….there were far less deserving people than me who were fighting far tougher battles than mine.
So, instead of focusing on the why, I focused on the fight. In the end, I was blessed to be a survivor with a beautiful, healthy little boy.
There is a strange thing that happens to survivors though. At least in my experience. There’s a sense of guilt and fear that lingers on….seemingly indefinitely.
When I hear of a child’s passing of cancer, I feel guilty that I survived and I question the sense and purpose in that. Am I doing enough in this life, as a survivor, to have earned it?
When I hear of a famous person’s passing of cancer, I’m afraid to read the news article….afraid he or she might have had a similar cancer to mine.
I feel guilty for having been diagnosed to begin with….in case it ultimately shortens my life span and leaves my son without a mom too soon.
I’m afraid it’s shortened my life span.
I feel guilty that I may have given my son crappy DNA.
I’m almost constantly afraid it will return. Every headache is surely a brain tumor. Every tinge of muscle or joint pain must be a sign of bone cancer. Every freckle looks suspiciously like melanoma. Shortness of breath must be lung cancer. Cramps….well, that must be ovarian or cervical cancer.
Most of the time, I can calm my anxiety with deep breathing, a round of golf, a mindless TV show, a great book, Yoga or soothing music.
Other times, quiet relaxation doesn’t help, so I do things like steam clean every area rug in my house until I’ve gone over them enough times that the used water is completely clear.
I take down curtains, clean them, iron them, rehang them and then obsess over each and every crease to ensure they are perfectly proportioned.
I organize closets and cabinets.
I scan Pinterest and ETSY for home project ideas and then I make list after list of all the things I want to do….and then I organize and prioritize the list before setting about tackling each item.
I keep moving, because I literally can’t sit still.
I rarely discuss with anyone that I’m freaking the hell out inside.
And then sometimes, to quote the Cheshire Cat, “We all go a little mad sometimes” and that I can’t keep secret.
The first time it happened, I was just a few days away from my first rescan post treatment. I had been incredibly busy as a new mom and had been so focused on my son, I didn’t realize my subconscious was preoccupied elsewhere.
I woke up one night from a sound sleep feeling as though I was in the midst of a heart attack. I had heart palpitations, my chest felt tight, I felt like I couldn’t breath. I was shaking, I thought I might pass out and pain radiated down my left arm.
“Something is wrong!” I told my husband as I shook him awake. We woke up our sleeping infant and the three of us headed to our local emergency room. When we arrived, my symptoms were all signs of a possible cardiac event and with my medical history, I was immediately taken to a room, attached to monitors and started on an aspirin regimen as they ordered various tests and imaging.
As the night wore on, I began to feel much better as I rested comfortably in my hospital bed….calmed by the attention of all the medical professionals monitoring my vitals and lab results. I was even lulled into a light sleep by the beeping of various monitors.
One at a time, the results of all the tests that had been run began to trickle in and each was reviewed with me by the attending physician.
After the last test failed to identify any abnormalities or cause for concern, my doctor….gently and without the slightest bit of judgement….said, “You know, you’ve really been through a lot and I think what you experienced tonight….wasn’t exactly physical.”
“You mean….it’s a mental thing?” I asked. Great. Now, I was crazy.
When I relayed the nights events to my Oncologist at my next appointment, he explained to me that it wasn’t unusual for people to experience anxiety and even post-traumatic stress like symptoms after cancer. I still felt ridiculous. I had never been a hypochondriac, or the kind of person who would waste medical resources and I didn’t want to become that now. I’d won, damn it! I was tougher than this….wasn’t I?
It doesn’t seem so and I try very hard to be OK with that. I’ve learned that the disease wreaks so much havoc, not just physically, but mentally and emotionally and maybe indefinitely so.
I’ve been officially disease free for four years, one month and six days….and yet, despite all the time that has passed, I still think about it….every day….many times a day.
At this point in my recovery, I see my large team of doctors once every six months. I no longer have scans. My doctor feels its best to avoid unnecessary additional radiation exposure given how well my body responded to treatment, but when the fear and anxiety really take hold, I often consider fabricating symptoms that would cause him to order one….just to be sure.
It’s hard to pinpoint sometimes what exactly causes my anxiety to get the better of me. Yes, the underlying factor is cancer, but I haven’t yet sorted out why I’m able to manage it most of the time, only to lose my shit….at a rapid fire pace, out of the blue and without any warning that I’m consciously aware of….other times.
So, I tell myself to breath….to breath deep….and to be thankful for every moment.