Cancer sucks. It sucks out your energy. It sucks away your passions. It just plain old sucks. Cancer also creates. My experience taught me to re-create my existence as I knew it, and at times, that sucked, too.
Now, I am almost three years (May 2, 2016…my wedding anniversary) past diagnosis and my first of three surgeries, people no longer try to make eye contact when they ask me how I’m doing. They try to ask the question casually, as they would to anyone else, and we exchange the usual banter. Then, they touch my arm and ask how I’m really doing. (Like they want to know the real truth)
How much truth do you think I will be able to slip in before they change the subject? Should I try to be funny or a smart-ass?
I more than likely will go with the thankful-but-challenged script that most expect. And I watch to see if I will be granted the space to get real with them about what is honestly going on. “I’m more than happy to be alive, of course, but my new life being compared to my old one sucks (note: there is a big frown on my face). I mean, I’m still dealing with a lot of side effects (note: their eyes are already wandering around the room…planning their escape), but don’t worry, it is nothing I can’t resolve by smiling a lot!”
Complaining has been and always be awkward, and complaining about cancer will get you more side-eye looks than a priest holding hands with a hooker at a pro-choice rally. People would rather hear about drama they can help with, like decoding text messages from a toxic ex or chitchat about Susie Cue having an affair with her boss. Scary diseases are to be avoided in all polite conversation, because, well, if your healthy, you would like to avoid talking about being sick, but this goes doubly if you’re a cancer survivor: I mean, you’ve survived, after all.
Me being me, I persist.
“So, I take this one pill called tamoxifen (devil drug) to prevent another recurrence, and a dozen more pills to deal with the side effects of the tamoxifen, but now that I am not sleeping and I am guessing I need to get a prescription of something for that, I’ve tried all the natural options, so…” I get interrupted.
“Better tired than dead,” I get told. And they’re right. I am grateful to still be alive. The alternative is not an option at this point. Yet, my life as it was, the one I envisioned and built and paid my dues for, is gone and not coming back. In my new life I have a fraction of my old energy, off and on nausea, no libido, uncontrollable irritability taking its toll on my husband and kids, osteoporosis limiting my outdoor activities, a weak leaking bladder, hair growing on my face, and a brain so foggy… I forgot what I was going to say.
Oh, yeah: that I’m grieving. Grieving now, almost three years later, because I had to get through multiple surgeries first, then I spent two years experimenting with how best to manage on this brutal drug, until I finally realized that any managing I did, of the meds as well as the scars and trauma of cancer itself, wasn’t going to bring me back to my old life. I will just be managing this one for the duration. Which seems like the kind of thing you ought be able to vent about. But no one wants to know the truth.
In my old life, as Wife, Mom, Oma and a full time job as a bookkeeper was so easy…now it is a bit sketchy at times. Even with medication to help me focus, I’m lucky to eek out my week productively. I’ve taken up writing this blog to let others know that they are not alone; so I’m not whining. With all these aches and pains and insomnia, can I reinvent myself before it’s time to retire?
Because to survive breast cancer, the advertising gurus will have us believe, is to thrive! Ever visit a breast-cancer website? There are more smiles than a dentist’s office. The women wearing colorful head wraps are smiling, their doctors are smiling, a young woman so beautiful she makes you want to go bald is smiling. And the survivors with their exciting new short haircuts, they grin, sun-washed faces like they’ve just returned from a wellness resort. There’s no fear of recurrence in their eyes, no hint of any long-term issues or complications. This unrealistic sight is held as reality over the rest of us, setting us up to sound bitter or lazy if we aren’t 100% happy as soon as we’ve “beat” the disease (and what does that mean, exactly?).
For me, it can mean the world is no longer looking at me, with my rebuilt chest and chin hair and refusal to pretend that post-cancer life is all pink and pretty. It means I lost friends who couldn’t take the heat, reunited with some old friends who understand the pain of cancer and loss and I struggle to find time for the good ones because I absolutely must go to bed early, even just to toss and turn, if I want any hope of functioning the next day.
Since I found my first lump in 2000 (there were a total of three between then and my bilateral mastectomy in 2015), I have been lucky, a word I utterly hate in this context, to live near top-notch hospitals. I have had no serious complications, no infections, no procedures that didn’t yield the expected results, no allergic reactions, no fertility concerns (my kids are grown), and none of the potential side effects at which you can’t throw yet another drug. My point being, even with such a fortuitous run-in with it, breast cancer savages much more than breasts.
Hormone therapy, Tamoxifen (for me), which according to the latest research I should endure for 10 years, piles on the insults: stiffening my joints, cramping my muscles, weight gain beyond anything I could have imagined, volcanic hot flashes, wrinkling and drying of my skin, squelch your libido, make sex painful (or impossible), mess with your ability to orgasm and even render your private parts numb, and growing hair on my cheeks and chin. Meanwhile, my hair thinned out tremendously, also.
My biggest challenge, though, is staying sane under the pressure to keep all this a secret. Without estrogen and progesterone, I’m a miserable, volatile beast. I don’t recognize myself in the mirror, especially if I’m naked, but I don’t feel like myself anymore to begin with, so I guess that works. Or would work, if I lived in my own private universe. In the real world it takes a toll on everybody around me. My husband has lost the woman he married.
Sometimes, the hardest part of life after cancer is moments like this, when I wish I could keep the suckiness a secret from people I love.