I walked past a man at the store who wore a white helmet with the words “I had a brain tumor” written cleanly across the front. I glanced at the helmet, which is not often seen worn by 50 year old men and smiled at him. As I walked away I felt compelled to show him my support of what he was enduring so I commented on the helmet and then, the brain tumor. Having recently completed treatment for cancer myself, I told him how I often wished I could wear a sign so that others knew to treat me gently during that fragile time, when even going to the grocery store took such effort. It got me thinking, how would we treat one another if we knew the trials we were enduring? If we wore them across our shirt (or helmet) for others to see?
After my daughter died I wanted to wear that sign so badly. I needed others to know that I was doing my best to face the world when every part of me screamed silently inside. My world had stopped spinning on its axis yet people walked down the street and in the grocery store unphased. I needed their compassion. If others were unable to offer understanding, even just a reassuring smile of acknowledgement would have been a salve to the loneliness I felt.
Seeing the man's bravery (and truly the necessity of his helmet for safety) allowed he and I to have a real conversation about his upcoming surgery where they would replace a missing piece of his skull. We connected on a human emotional level beyond a quiet glance as we roamed the aisles searching for milk. It was a beautiful moment in the mundane errand.
After asking a friend how could I possibly face the world after my daughter died, she commented that everyone is fighting a battle we cannot see. That every person we pass on the street has endured a tragedy that at one point defined them. It gave me something to think about; that I was enduring the greatest heartbreak of my life and that even though others may not know this exact pain, they know their own pain. It was hard to have compassion for others at a time of such devastating grief, but it did give me something to consider.
We may not wear the sign of our life’s tragedy on our sleeve, or even on a helmet, but we can treat one another as though we do. We can offer a smile, look others in the eye, and be kind. We can glance up for true human connection with those we sit next to on the bus, at the bank or doctors office. We are all fighting our own battles and doing the best we can to show up. Even if we can’t read each other's signs, we’re all wearing them on the inside.
I got a clear scope yesterday. I have scopes every 3 months. I alternate visiting my team of doctors between my head and neck surgeon (ENT), radiation oncologist, and the medical oncologist (chemo dr) so they can all monitor my progress. Even to write the titles of my doctors makes my stomach turn.
It’s why I haven’t written in months.
Literally, it’s been months.
Over the summer I picked up a project that had been at a standstill for 5+ years. We were in France, with our boys, staying at my girlfriends house. She and I met at a retreat 5 years ago, roommates, bonding because we were both breastfeeding a “rainbow baby”, a baby born after loss. But we connected over so much more; over our loss, our love, our advocacy, our yearning to help other moms, and just plain love for each other. Since then, she has stayed with my family and finally now, mine with hers.
I sat in her home watching our children play, hearing laughter and seeing friendships form over legos, Nintendo, and bike rides in the backyard and the shared bond only our type children have-a sibling who died. Their sister, Sistine’s picture, sits on the mantle with her siblings just as Ruthie’s sits next to hers. These sisters are loved and included in our families because they are loved and will always be family.
So in the middle of the trip that I longed for during my year of treatment, I felt compelled to complete the project I started for my first son. I wanted a children’s book to explain who his sister was and how much we love her. And that’s all the creativity I could muster this past six months. I threw myself in a project that sat still for so long because I can’t face the trauma and fear of cancer.
It’s interesting, this year I was able to write every single day chronicling Ruthie’s life, but I cannot write of my own. I don’t want to think about what I experienced when I’ve been given this gift to live. I don’t want to think, I just want to live.
However, in not thinking, it still weighs heavy on me. That sick feeling in my stomach, the awkward responses when someone comments on any of the coping skills I’ve adapted because of my mouth pain. I know the world sees a healthy me, I see a healthy me! But when my mouths dries, or my voice weakens, or I can’t swallow my food, or I have to brush my teeth in a public restroom, I feel it. I feel being different-again. And I feel self-conscious and sad.
So I don’t think. I just live. I allow my body to prove to me it’s strength. I challenge it. I completed a sprint triathlon. I joined my son in his first mini triathlon. I use exercise as my outlet, as I used to do when I was young and healthy. Because while I may not be young anymore, I am healthy again.
And when I get clear results I search for a way to eliminate the fear, anxious, adrenaline in my body. I don’t want that energy settling, I want it to be released. Yesterday, I ran two miles without stopping to think because I don’t know what else to do and thinking makes my stomach turn. But as I ran, I reflected on my coping skills when I couldn’t get out of bed. I couldn’t exercise, I couldn’t walk to the bathroom without getting winded and I thanked my body for the ability to run yesterday. I am so grateful and not for one moment doI take it for granted.
So this is my first attempt to think about it. It hasn’t even been a year since completed chemo and radiation after I enduring two surgeries. Remembering the pain and sickness of those treatments leaves me with a grateful appreciation of healing, but the reality of it still makes me want to vomit.
It has been 6 months since treatment ended and nearly a year since my diagnosis. It’s crazy to know that this time last year, I thought I was healthy. Only, I wasn’t. And, I didn’t feel healthy. Once a triathlete, lover of anything active outdoors, I could hardly talk myself into taking my kids to the park I was so tired every day. I thought this was the life of parenting two young boys. I never regained energy back after having my youngest son and thought everyone must feel like this. So, I forced myself to walk and cycle to work each day. That old saying that exercise will give you more energy did not seem to be working, but still, I tried. I only work a mile from home, it’s not like it was extreme exercise or anything.
I think about that time and how tired I was and in retrospect, I can pinpoint exactly when my symptoms appeared and it was even a year before then! That sore throat that was supposed to be allergies, or a cold, or post nasal drip...So, how long had I had cancer before diagnosis? I will never know for sure. But I do know that I lived with it for over a year at minimum.
But now, thankfully that time is a memory. Well, it would be a memory if I actually could remember anything. Chemo brain is real. Or maybe it’s the radiation to my head. Realistically, both are so damaging to the body.
My memory is so shot that names, days of the week, the month, and sometimes the year are hard to recall. And don’t get me started on that word I can’t remember...But truthfully, I am lighthearted about the memory loss feeling a kinship to Dory, the fish. She was so happy and her memory loss only affected those around her, not her, so sorry (husband) about that! I do live more in the moment now, which for me is such a sweet gift since I am unable to multi-task as I once did. I am not sure if this will be a permanent side effect or life-long but I don’t worry about it, I am appreciating the slower lifestyle for now.
But cancer is still a common thought in my mind although I wish it weren’t. Sincere comments on my looks are a daily reminder of what I endured to look “so healthy” or be “so thin”. If only my insides matched my outside appearance. I would gladly take back my puffy face and 35 pounds lost if it meant I didn’t have to feel the constant tightness in my neck and shoulders or if I could turn my head to the left without my voicebox being constricted. It would also be awesome to have my salivation return. I would love to eat food without a glass of water on standby in case I choke. And, chewing gum while teaching is a bit hypocritical for my students for whom gum is not allowed. And the PTSD...
The PTSD felt by this diagnosis and following treatment is real and not only felt by me but also by my husband as I am discovering more as time goes on. I can only imagine how terrifying it was to be a helpless bystander to my treatment after watching our daughter die. Quite honestly, the emotional effects are probably a bit lighter for me because of all the anxiety and pain meds I was prescribed, I don't really remember much of it-except the pain. The fear of a sunburn on my neck is enough for me to invest in hats as my favorite outdoor accessory for life. And EMDR therapy is my new best friend. (I highly recommend it,)
But life is full of life now, even amidst the side effects and trauma. Each day I wake my first thought is of my neck because the skin tightens overnight and I have to stretch it out and massage oil into it, but I do so lovingly. I still thank my missing lymph nodes daily as I rub the scar that looks more like a wrinkle now. But my second thought after my neck is that life is (still) good. It has been hard, terrifying, heartbreaking at times but I am still alive. I am so grateful.
Returning to work has been amazing although exhausting. I wish I could have afforded a bit more time off to heal. But in returning, I have eased my way back into teaching and although I am not doing so or ready to yet, I hope to be fully ready come August. And family time is richer now, knowing that for a time I could only listen from my bed as Chris laid them down each night. Now I get to participate again and I have never loved bedtime so much. And friends. My energy doesn’t allow much for socializing yet, and I do miss events from exhaustion or take a few days to recover when I do attend, but it is so worth it. Every day to wake up alive is so beautiful. Even the hard moments when I hate cancer, I remember to send my body love and gratitude for all it has endured.
I feel like I should celebrate the day that I was diagnosed. Although that day and that moment was beyond terrifying, it was an awakening to yet another life, another opportunity to do differently, and remember life’s fragility as was so apparent after our daughter died. It has become yet another chance to be sure that I am living the life I want and being a person I am proud of. And, I am. I have survived a LOT, so much that I wouldn’t wish upon anyone but I still wake up and smile. I still want to live life fully. I still have more to do here.
So, here I am. Living life full of life. And once my energy FULLY returns, you better watch out! You thought I did a lot before cancer, I have so much more to do!!
Until then, I am still healing. They warned me to expect to recover and heal for at least a year after treatment and it appears I am right on course. In the meantime, I continue to take care of my body, my mind, my soul and connect with that which is beautiful in life by LIVING. It isn’t easy, is a constant choice, but a choice so gladly made.
Life is (still) good.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.