First off, thank you to everyone who has been reading this journey of mine, especially in the past few days. I’ve been off-line since Monday, and there have been more than 400 visits to the site in just a few days. The majority of visits come in via Facebook, but many have come in through “marathon before mastectomy” searches.
This week was Retinoblastoma week at Camp Sunshine, which means it’s an opportunity to walk the thin, and thick, line between “fitting in” and “feeling special.” For 5 days out of the year, my daughter, a retinoblastoma survivor, is in the majority. She is surrounded by kids who have survived cancer of the eye, and during this week, having one eye, having sibling with one eye, having no eyes, and/or having eyes that have been treated with radiation or chemotherapy is completely normal. It is also a time when I feel completely normal as a parent — I’m surrounded by parents and family members who have gone through a similar (not necessarily the same) journey. We don’t have to explain the basics. And, oftentimes, we don’t even talk about cancer. We laugh. We play. We cry. We just be.
Our family has been going to Camp Sunshine for four summers now. Because we are a few years out of diagnosis (NOTE: we never, however, are in the clear… ever), we aren’t feeling the rawness and pain. Many new families, though, do experience this feeling of heightened anxiety, curiosity, and eventually, relief.
It felt so great to hear that my friends — fellow Rb parents — are also reading Mb4M. Thank you, dear friends. Even if we don’t necessarily connect at Camp, you are always with me. I’ve blogged before that I am sometimes socially awkward, and so writing is the way that I can feel eloquent, verbal, expressive. But, each and every one of your words of support are held so close to my heart — so, thank you.
On the way home from Maine, I received a call from Sue Friedman, Director of FORCE (Facing Our Risk of Cancer Empowered). She connected with my sister, Grace, and offered me a full scholarship to attend the annual conference next week. This event is a full weekend to learn about BRCA, mastectomies, oopherectomies, to see people’s surgical scars, results, and hear about their processes. It’s a focused weekend to hear about hope, life, and taking control of the risk of cancer. Should be right up my alley, right?
I hit “end call” on my iPhone. I felt honored. Excited.
Completing the 1/2 marathon was amazing, definitely. Yet, finishing also meant I was one step closer to this surgery. As a psych major, I fully recognize what’s going on with me — I’m trying to postpone the reality of this surgery in any way that I can. If you’ve followed my Facebook status, read the last entry, or talked to me in the past week, you’ll notice that I’ve said one thing repeatedly: “Well, actually, I feel like I should be true to the blog title and run a FULL marathon before this mastectomy. So, ya’ know, until I run that marathon, I guess I won’t do the surgery….”
I know I’m not interested in running a full marathon. Seriously? No thanks. But, intellectually, I know I’m saying it to avoid the surgery. I’m trying to find ways to get around it.
Attending this conference takes me one step closer to reality.
A few months ago, I attended a local FORCE meeting. While going to get a cup of coffee, I happened upon a “Show and Tell” — a fancy code word for “I’ll show you my surgically removed boobs if you show me yours.” Not dirty. Just factual. Just reality.
I was feeling fine, talking to women, hearing about their choices, their hormones, their recovery. But, catching a glimpse of the smooth, mannequin like chest (no nipples, just skin) of the woman to my right was too much for me. I gracefully thanked my host, gently closed the door, and ran as fast I could to my parked car. I didn’t even wait for my GPS to load. I was outta there.
It truly wasn’t the sight of this woman’s chest that scared me. It was the thought — the knowledge — that I, too, would be that woman sometime in the year.
Honestly, friends, I can’t exactly put into words why I’m so terrified. I just am. Statistically, intellectually, emotionally, I have completely bought into the fact that this is the right choice. I want to be alive for my children, my future, my husband, my life. I know that removing my breasts — and eventually my ovaries — just makes sense. Just like removing my daughter’s eye made perfect sense, too. It saved her life.
On one hand, I’m not ready. On the other hand, age 35 is within a few weeks away, and that is the age when my sister developed cancer. It was the age when my other sister discovered pre-cancer.
Heading to the conference in Florida means I’ll “fit in.” Outside of my family, I don’t really know anyone else with BRCA nor anyone who has had to make the same choices I do as a young woman.
Yet, this isn’t exactly a club I want to be a part of, you know? I’m anxious about this trip, and likely, will turn to all of you to help whittle some of my thoughts through.
Looking forward to your support, friends! Chime in! Comment! I’d love to hear from you!
Peace, love, and “I’d love to belong to the $1,000,000 club instead of this one…”,