Over the past few years (6 years, to be exact), my life was thrown into this journey of understanding, hating, embracing, loving, despising, questioning, being thankful for, managing and living with this Thang Called Cancer. Of course, I’ve had people in my life — prior to those 6 years — who have been diagnosed with cancer, battled cancer, cured-then-relapsed-from cancer, and currently live with cancer. Just in these past 4 years, I’ve begun to understand what it means to live in a pre-cancer state.
But, I gotta say, while I count my blessings every single day that we were able to catch my daughter’s cancer (she was diagnosed at age 2) in time to save her life, I haven’t faced anything more challenging than being helpless in my daughter’s cancer. She’s alive. I haven’t lost sight of that (no pun intended!). I know that with all this mastectomy and BRCA and ovarian cancer business that I’m going through, this journey doesn’t compare to what she went through.
In my daughter’s post, she referred to herself as “having cancer.”
Let me explain…
While, technically, we are not in active treatment, we still are forced to live lives that are reminded — daily — of cancer. From the moment she wakes up, my daughter has to engage in a routine that very few kids have to do. She wakes up, immediately puts on her protective eye wear, checks the mirror to see if her eye is upside-down, twisted, or in the right place. She checks to see if it has “goop” or if it is covered in hard, crusty mucous. She knows to identify the color of her “goop” — if it’s green, she can move on with her day. If it’s tinged with red, she needs to immediately call for Mommy. “Red” would indicate she might have a tear in the skin between her prosthetic and her coral ball that is delicately sewn in place where her eyeball once lived.
My 7-year old (I realized I started writing this post when she was still my six-year old) must also be very aware of her body. A “headache” could be dehydration. It could be sensitivity to light. Or, it could be a mass exodus of uncontained cancer cells that have migrated to her brain.
When she leaves the house, she must meticulously apply sunscreen to her body. While other kids worry about sunburn, my 7-year old realizes that she has an increased risk of cancer — whether it be from retinoblastoma, VHL, or an un-determined predisposition via BRCA.
While she is not actively on chemotherapy, my daughter still lives with the effects of cancer, chemo, enucleation and a prosthetic eye. She has a list of nearly a dozen doctors that have followed her over the years, and many of them we still see.
But, while she is very aware of the health risks she holds, my daughter also wears a scar/badge that others notice. Her prosthetic eye does not move naturally, and therefore her survivorship is noticable. But, try explaining “survivorship” to playground friends, and all one gets is funny looks. She’ll have to navigate friendships that, at this age, are prompted by what your hair looks like, how many Silly Bands you have, and whether or not your sneakers are Sketchers or the Target version. Sometimes insecure of her prosthetic, she is shy around new kids, tries hard not to make eye contact, and is very timid about the physical activities in which she engages.
She is not on treatment. But, forever, she will feel the effects of cancer — the very real worries, concerns, and struggles.
That’s why we say “she has cancer.”
Not too long ago, my sister Grace decided to take a yoga class designed specifically for women who have had a mastectomy. When Grace arrived at the class, the women introduced themselves and shared “when they were diagnosed with cancer.” Grace grew increasingly anxious as her turn arrived. “I’m so sorry. I didn’t have cancer. I did have a mastectomy, though.” She felt guilt. Shame. Embarrassment. Here she was, taking a yoga class for women who had mastectomies due to cancer.
” Honey, did you have to make a difficult decision to have your breasts removed to save your life?” one woman asked.
“Yes,” replied Grace.
“Then, you belong.”
While Grace didn’t have cancer — and fell into a previvor category — she still has the physical effects of cancer. No, she did not get sick from a course of chemo. No, she does not have scarred burns from radiation. She does have physical effects of the mastectomy. And, for that class, she shared something very important with those women.
Unlike my sister, Mary, I will not have cancer. Unlike Mary, I will not have chemo. I will not have radiation. Yet, just like Mary, I will have a bilateral mastectomy. I will have pain, will have to undergo physical therapy, and will have to recover from surgery.
It’s getting closer and closer to the date. Gosh. Just as this summer is flying by, the time between now and surgery is coming fast. I’ve recently made an appointment for my pre-op: mid-September. Yikes. And, then, I know it’ll be right around the corner.
The other news is that I am registered for the Boston 1/2 Marathon! That’ll be the last race before surgery. Registration is officially closed for that race, but I’d encourage others to train/run that weekend! I was thinking about my friend, Emily Cobb Henry, who wasn’t able to make the Worcester 1/2 in June but who created her OWN 1/2 marathon and ran it (complete with her daughters serving at a personal “water stop!”).
Peace, love, and always a survivor (even a pre-vivor!),