Living life post cancer is challenging. I won’t say it sucks, because it doesn’t really, it’s awesome in many ways, when you can get past the hurdles. A cancer diagnosis wakes you up from the stupor and drudgery of daily life, shedding unnecessary layers to reveal what matters. I was fortunate to overcome cancer, and in doing so, feel eternally thankful for it all. The experience now allows me to move through life lighter and happier.
Getting back to “normal” post cancer is an interesting road to navigate though. For one, there isn’t a single day or even hour that passes by where I forget what happened. It’s like a permanent stamp on my psyche and my body. Sometimes it’s because my surgery site or port scar shoots a random pain reminding me of what happened there, or my heart flutters and I wonder if it’s potential heart damage from the chemo drugs. Sometimes I remember as I’m sweating like crazy under the hot Florida sun, what it felt like to do my usual farmy-gardeny stuff while feeling nauseous, and with no body hair to wick the sweat away. I felt awful, but it was the only thing that actually helped reduce the discomfort, and provided much needed nature therapy.
How awful it felt though, and how slooooow I moved. But in that slowness, sitting on a cart in the middle of the farm field under the baking sun, I’d watch butterflies feed, and hummingbirds quarrel. It temporarily alleviated my discomforts, allowing my mind to drift from the physical body to be one with life, the clouds, bird song, the breezes…
But sometimes there’s no physical reminder, just a memory of the general experience. Or a random thought like, damn I can’t believe that was ME that had sarcoma and went through all that! Seeing pictures of me thin and bald almost seems unreal, like it was someone else. While it seems like just yesterday, it also feels like a past life.
As time has progressed the intensity of these thoughts, has dissipated. But they are never gone or far from awareness.
I’ve met people since this major life event, that don’t know this about me. Early on after I was newly freed of the red dragon (the loving name given to the red chemo drug), I had an impulse to tell every person I encountered that didn’t know my story. I want to tell them, because it’s such a part of who I am now. But I often don’t bring it up at all, even if an opportunity presents itself. Sometimes I do. It depends on the person, the situation, the conversation. But it feels like I’m keeping a secret, not explaining why I have to leave early (for a follow up scan), why I’m feeling a little blue (what if this comes back), or particularly jubilant about something small but wonderful that happened (a new flower bud opened that I’ve been waiting on).
Going on almost 5 years now of remission or “cure”, the compulsion to want to be sure everyone knows I had cancer, has dwindled substantially. When it feels right to share with someone, I do. Otherwise I don’t think about it too much. Sometimes it’s very casual when I bring it up, and I can tell it throws people off.
When I was a newly NED (no evidence of disease), only months out of treatment and grateful to be out of the immediate grip of cancer, I was hesitant to commit to anything. Any kind of event, trip, or whatever that required commitment I just couldn’t do because I didn’t know what was next. As each successive check up continued to show NED, I got more confident that this was the new way, and I could start taking deeper breaths, and committing to more things.
After about two years of NED, I rarely hesitated to commit to something I wanted to do. I felt free, even though I could never be certain. It all felt so distant, even though I could recall in an instant the unpleasant details.
But every four months, as I’m lying in the scanner tunnel, listening to the machine telling me to hold my breath…and now breeeeeathe….I contemplate why I’m there, and wonder what it’s seeing. I think about what is now back on my plate and how it might all come crashing down again if I hear those dreaded words uttered once again by my oncologist.
When my hair grew back, it was dramatically different and….FABULOUS! I went from straight, thin, blond to curly, thick and dark. It was marvelous, really. I joked that it was the most expensive make-over I’d ever had! I am certain that some people (mostly men) didn’t recognize me, if they had not seen me since I was a blondie. But booo…a few years later it grew out and turned light again.
It’s really crazy how quickly things can get back to the way they were before. Life gets busy, personal care and check-ins get shoved aside for more pressing work and life details. Sometimes, caught up in life, I reflect how insane it is that I may feel EXACTLY like I did around the time I got the diagnosis. Too busy, too stressed, not enough self care and awareness. I get nervous and a little down on myself for allowing it.
But I have this cool thing now, an automatic reality check, because that stamp on my soul and my physical body never lets me forget. It reminds me: you are lucky to be here, life is so incredibly beautiful, you are doing great things! Check in, slow down, what do you need? Take care of yourself. Everything you need is here, you just need to accept these gifts.
So I forgive myself for letting things get out of hand, and I thank my body head to toe for being so resilient and cooperative. For letting me exist in this physical world, to do the things I enjoy, and love the people I love. Mike Milleson especially, he’s a cool guy, I want to hang out with him a lot longer so I need to get it together.
Wouldn’t it be great if we all had a built in sensor like that? So in a strange way cancer has been a blessing. I don’t know if this will last forever, or if it will show up again at my next scan. Either way…I continue to dance with my friend NED and am eternally grateful for the people that helped me through.
Survivor guilt & privilege