The Story in Our Scars

Over the years I have accumulated various scars across my body. When I look at myself, at first glance I recoil because of how “damaged” that I feel like that I look. But if I really think about it, they each tell a story. Some are happy memories like the small scar on my right wrist is from making pancakes when my stepdaughter visited for the first time or the small faded scars on my knees are from middle school when my classmates and I used to jump off the roof of my friend’s house into her swimming pool (sorry dad). But there are the other scars, that chronicle a more painful journey, like the round scar on my abdomen from the ileostomy I had and, the small incision scars from my three surgeries over the last year and half, all related to my cancer journeys. They are meaningful to me, but also superficial. For a lot of us, there are scars that are never visible to others – the emotional scars of loss, of abandonment, of abuse, of shame, of guilt, and so on. We all have these internal scars, and they are different for each of us. Mine (well at least some of them) come in the form of loss, guilt, remorse from bad choices, shame from abusing my body. My status as a mental health therapist doesn’t make me exempt from feeling these things and carrying them with me. It doesn’t make me exempt from still feeling the feels associated with them. What I have learned over the years is that these scars shape and mold us. While we are the midst of the storm, we are unable to see the lesson or value in them. We cannot fathom how we are feeling can possibly benefit us or ever be a good thing. We cannot comprehend how things will ever be better or that we will be able to feel something other than the pain/sadness/misery we are feeling now. But one day there is a shift – and we don’t always notice it, but all of a sudden it hits us, and it is “okay, I actually feel pretty good today” or “huh, it has been x many days since I have been feeling ________”. The good days start to outweigh the bad. We heal, we grow, we have hindsight. Our scars aren’t all bad. Just because people cannot see them doesn’t mean we can’t or shouldn’t share them. There is power in our story, there is purpose for our pain. We weren’t meant to go through it and do it all alone. There are other people out there who have been where you are, or are maybe still in the same place as you. Our scars tells a story, and in sharing our story, it keeps these scars from having power over us. In sharing our story, it creates community, it creates healing. Do not fear, do not be ashamed, you are not alone.

Where I Thought I Failed Myself

In 1993 I was 16 years old when my mother died from metastatic breast cancer. I was unbearably sad and angry on so many levels and for a variety of reasons. One reason that had always stood out for me, and was a sticking point was how could a woman who ate healthy, worked out 5 days a week, didn’t smoke or abuse her body could get cancer not just once, but twice, with it ultimately taking her life? I looked at is as a “why bother to take care of myself, it didn’t do my mom any good”.

While I didn’t completely abuse my body, I sure did not treat it like any temple. When I started experiencing symptoms related to my colon cancer, (which in hindsight began about two years prior to my diagnosis) I was able to easily explain it away to bad diet, stress, lack of sleep, no exercise, and so on.

When I began seeing my oncologist and the colorectal surgeon we would review my medical history, my lab work, etc. My standard answer was always “I am perfectly healthy except for this cancer thing”. Nothing was ever out of whack or out of the ordinary enough that if you were to look at my medical file to indicate I had anything wrong with me.

In the first round of chemo, people would comment with surprise on how good I looked, as well as surprise that I was still up and working, living my life as normal. I, however, was very hung up on having an ileostomy – feeling gross, defective, embarrassed, in addition to the new scars on my midsection from surgery and the quarter size port protruding from underneath my skin. I told my husband I felt like I looked like a science experiment. After my ileostomy reversal surgery, we joked about the appearance of that scar, along with the scarred skin worn away from where my “poop bag” (as my littles liked to call it) has rubbed against my skin for the better part of 9 months.

But I was in an upswing – my body cleaning itself out from the 6 months of chemo, hair regrowth, getting back my energy, slowly getting my pre-cancer personality back. So going for my quarterly CT scans were not a big deal to me. But thanks to technology, I saw my results on the healthcare app. I sent a screenshot to a friend who is a nurse and another friend who is a doctor. I knew the words “evidence of metastatic disease” were not good. That Monday I spoke to my oncologist by telephone and by Friday I was in for a biopsy. Ten days later diagnosis confirmed, seven days later 5 rounds of the most wretched chemotherapy began (which was about the time “lock down” for quarantining from Covid began in Florida).

I though going into this I was an old pro. Boy was I wrong, the stress, anxiety, depression when I walked into the “chemo room” coupled with the medical smells and then getting a new chemo regimen that knocked me straight on my ass took me by surprise. Then came the weight loss, then the hair loss, then the other physical side effects. There were days I would just feel defeated and cry and days I would be pissed and then days I was “okay”. I kept asking myself what did I do to deserve this. Is this what my life was going to always look like? Every few months being terrified to get my scans done….waiting to see cancer pop up again somewhere else…afraid to plan, hope, dream.

When surgery happened in June, my recovery went well, really well, despite the doc doing a couple of quick “extra” procedures while he was removing my tumors. But the word from him was that the chemo shrunk my tumors down so much they were hard to locate and there was no evidence from what he was able to see of any residual disease in my liver.

I met with my oncologist at the end of June. Thinking I was going to get the “all clear” blessing I was thrown for a loop when he wanted to discuss a “plan of action”. Huh? The cancer is gone. I don’t get it. Basically, he wants to continue chemo treatment for me as a preventative measure. Pill form. For a least 6 months, or a year, or longer. He cannot make guarantees it won’t come back but with these preventative measures, it will help my chances.

So I went out to the waiting room and when my husband and I got out to his car I started to cry. The “why me” and “why can’t this be over” running through my head and out of my mouth.

It was a few days later that I had a realization. When my mom was diagnosed with metastatic cancer, it was terminal, but the doctor gave her months. She actually lived a year and a half. The way that she had taken care of herself over the years gave her that extra time….her body didn’t betray her, it helped prolong her. It is just something that I wasn’t able to see or comprehend in the depths of my grief. And then I took a look at myself – my joke of “I am perfectly healthy except for cancer” actually means something. It helped me heal quickly from my surgeries, it helped me get through both bouts of chemotherapy, it helped me to physically fight what was happening inside of me. My body didn’t fail itself, I did not fail me.

Now as I get ready to resume chemotherapy, while I am not excited about it, I do not feel defeated, I do not feel scared. I know there will be an adjustment period. My husband and I started approaching our eating habits a little differently to focus on optimal nutrition, I have switched primary care physicians to someone who works in Western and Eastern medicine and treats cancer patients. I am doing more reading, and slowly more self care, trying to stress less and be more mindful and more present (baby steps). And I am still on the path to run my first 5k with my brother and sister in law in November.

I know it is okay to cry, to be sad, to be angry, to be frustrated, to feel bad for myself. We should not deprive ourselves of the ability and the need to feels the feels and express our emotions. We all need that. But that is not where we should remain, we shouldn’t allow that to take over and extinguish the joy, dreams, wants, desires, laughs and love that lives inside us. We have the power to change, even if it is one tiny thing, just one small change a day, and when we master that, we add on another, then another. No one other than ourselves is responsible for those changes, no one other than ourselves is responsible for our healing or our happiness. But we can enlist others to join us on our journey, to walk beside us and help hold us accountable if we need it, or to just have a listening ear, or someone to sit with us in the silence of our sadness. The choice is ours, how to we want to live, what can we do to start today.

It is never too late to learn from our mistakes and do it different. I didn’t fail myself. I am finally starting to understand myself.

Remembering mom – before we lived in Florida. We took this trip from Long Island to Disney in August 1992, 7 months before she passed. This was our last family trip.