Medical PTSD: Nina Simone, You Do Know How I Feel (Part 2)
I sometimes relive the moments in which I was told about CLL and the fabled colon cancer. I even have the occasional dream – or nightmare – about my condition. Denying that the trauma exists, or avoidance, isn’t my style; rather I think and talk about it round the clock and a lot of that thinking is negative. By all accounts, I am a happy and hopeful person. My life so far has been an amalgamation of fortuitous events. Even after my initial cancer diagnosis I secretly knew I would persevere: “oh, freedom is mine and I know how I feel.” But, with time, and the growing number of occasions in which I find myself gobsmacked by medical surprises, I wonder whether I’ve just been naïve my entire life, failing to see the whole pathological picture. Medical PTSD does that to you; it has no tolerance for self-assurance.
It’s then you start engaging in behaviors like over-sharing your inventory of new symptoms with your friends only to find they can’t relate leaving you more alone and despondent. Or having moments when you are so anxious about your health you can’t be intimate with your spouse and suddenly that moment unfolds into days or weeks. In short, medical PTSD unequivocally hijacks your mental well-being. But what’s most fascinating? It’s the magical power medical trauma gives you to conjure real physical symptoms. I’m like Gandolf when it comes to summoning my cells to unlock their creativity.
My cells got creative
And my cells got creative. Even though it turned out not to be colon cancer, I decided to go through with the surgery at the advice of my doctors. I was an A student in recovery leaving the hospital a mere two days later. I followed all of the rules to a T and seemingly put it all behind me. Then several weeks later I remembered something. Going over the pet scan I had before the surgery I recalled my doctor mentioning some highlighted activity in my tonsils. Tonsils? Apparently, this is a common location for false positives but that didn’t stop me from spending an entire season with a sore and swollen throat. I knew I had tonsil cancer – only I didn’t. I saw my Ears, Nose, and Throat specialist twice during this period and he assured me that he didn’t see anything alarming in there.
Then the lymph nodes in my neck started to swell. They were small but because I like to frantically feel my body like I’m administering my own deep tissue massage I showed my doctor and he agreed that we should do an ultrasound. The ultrasound exhibited seven enlarged nodes on the left side of my neck so I proceeded to have a biopsy. By this time, I became fast friends with Lorazepam, one of a group of psychoactive drugs that the cool kids called “benzos”. Historically, I’ve never been a pill taker. I have to shed tears to warrant an aspirin. Oh yeah – I’m over that. Negative thinking strikes again and like many, I crawl down the rabbit hole with a flashlight at night. As much as I like to curl up in bed pondering what the lives of my husband and daughter look like without me, I like to sleep even more. Lorazepam helped me do that. “Sleep in peace when the day is done, that’s what I mean.”
Add a pandemic into the mix
Thankfully, that neck biopsy didn’t show anything malignant but also didn’t reveal an explanation for the enlarged nodes. At the same time, this was happening my antibody or IGg levels were steadily decreasing. Antibodies, the proteins that protect against foreign invaders, have become part of the mainstream vernacular with the onset of the Covid pandemic. Ah, Covid. Did cancer get you down? How about we add a pandemic into the mix? I didn’t want to risk getting Covid without a defense system to fight it, so I started receiving intravenous immunoglobulin (IVIG) infusions every six weeks giving my antibodies a boost.
Then there was the right-side occipital headache, the tingling, and numbness, the abdominal pain, and I needed another colonoscopy – I’ll spare you the description of what led me back there. Test results for all of these symptoms revealed – you guessed it – nothing and all of these physical symptoms have since improved or disappeared. I certainly didn’t imagine them, but did my mind manufacture them?
It’s been over eight years since my initial CLL diagnosis and over a year since the colon cancer debacle and I’m still left with one diagnosis: CLL, the cancer I started with. I don’t have a PTSD diagnosis. I have never seen a doctor for it, but I don’t need a doctor to tell me it’s real. Medical PTSD is genuine and it can grab you hard and swift like your grandma after her Covid vaccine. But, I can tuck it away for a while – for days when I’m between routine blood tests, or when I don’t have anything too unusual going on with my body, and sometimes even for years. It’s during those times I channel my inner Nina and warily whistle “it’s a new dawn, it’s a new day, it’s a new life for me, and I’m feeling good”.
Read Part 1 of Medical PTSD: Nina Simone, You Do Know How I Feel.
What type of blood cancer are you or your loved one diagnosed with?