I don’t blog nearly enough. Then, I feel guilty, and I wonder if I should just give it up altogether. Throwing the baby out with the bathwater has never been my style. It’s like with cross fit: so what if I’m the slowest and the weakest in the whole box? Do people actually give up cross fit for that reason?
So, here I am. My birthday is in 2 months, and it’s a big deal. This’ll be my 5th birthday, post diagnosis, and will be the lead in to all my 5-year anniversaries. Five years cancer free, post-diagnosis is when a lot of cancer survivors are proclaimed to be “cured.” Stage 4 Ovarian Cancer doesn’t work that way. I had a 15-20% chance of still being alive, 5 years post-diagnosis–that’s alive…as in still breathing, in ANY condition. There was practically no chance that I’d be cancer free as long as I’ve been.
A long time ago, I decided to co-opt the “5 year anniversary” for myself. I was starry eyed and in denial. I was so over the moon about feeling good again, after finishing treatment, that it felt safe to believe that miracles could happen.
Fast forward nearly 5 years later…I’m cancer free. Still. My ca125 is giving me grief but, so far, that grief hasn’t translated into evidence of disease on any scan, of the last 7 months. I’m heading into my final year at Berklee, I cross fit 4 times a week, I have long hair and long, limitless energy.
Lately, I’ve been daring to think about the future, and it’s the future of a healthy person that I see in front of me–the kind of future that oozes with hope and possibility. I’ve spent the last 5 years “in a cocoon of self-banishment,” as Anna Kendrick so eloquently put it. I’ve re-discovered myself, crammed more music theory into my skull than I ever thought possible, gotten a degree (practically), improved my physical fitness, written a ton of songs, read a bunch of books, traveled, painted and sketched on museum gallery floors and at my little aisel in my apartment, and just generally have gotten my shit together. It’s been 5 years of incredible growth, but it’s also been 5 years of waiting…
…waiting to do the things that really make a life: having a home and a dog, finding love, becoming a mom. I’ve always thought it would be irresponsible to pursue those big life goals, if I wasn’t sure I was going to be here to follow through, if I was just going to be living as best I could, in between relapses and poisonous treatments. At the same time, I didn’t want to live in fear forever, afraid to do things, because “what if the cancer comes back?” What if it doesn’t? 5 years is the amount of time that I decided made sense to wait. The odds of me surviving that long were so slim, that I figured it would be a good litmus test. “If I’m still cancer free in 5 years, I’m going to do…everything.”
So here I am. Standing so close to Five Years, that I can practically taste it. In the meantime, 2 fellow Teal Sisters, in my immediate circle, are in continuous, never ending treatment, 2 years and 3 years post-diagnosis. Sister #3 caught a pnuemonia that her immune system, weak from 3 years of non-stop chemo, couldn’t fight off. She died 2 months ago. It makes me sad to think of everything she’s missed since she’s been gone. She won’t get to see the next president elected. Like that even matters, but it struck me hard.
Then there’s me–Sister #4. Do you get how fucking serious this is?
My friend needs a bone marrow transplant, to cure her non-hodgkins lymphoma, but she doesn’t have a match. She’s the friend who had an experimental cord blood transplant last summer, who I took to the hospital once a week, every week for months. It took her a whole year to recover from that horrid failure of a transplant. It also took her a year, almost to the day, to relapse. She was finally getting her life back on track. Now, she’s just back on chemo. She still doesn’t have a match, which means they want her to have another, even riskier transplant now. She doesn’t have the stregnth to talk about it. How could she? What is she supposed to say to people? It’s an impossible situation. Who can live like this? How can she go through this again?
I imagine a parallel universe, where there’s no cancer; only friendship, and dinner dates, cross fit and shopping trips and long phone conversations. I miss her every time I walk into TJ Maxx or Target. We made some happy memories going there last summer, when her ANC was finally high enough that she could go places. We spent 2 hours in Target. I’ll never forget her, at the end, being so exhausted, and I asked her if she wanted to leave, or if she wanted me to get a shopping cart and push her around (we had a good laugh about that). She said she was fine, before she sat down, on the floor, in the cosmetics aisle. “I JUST WANT TO LOOK AT ONE MORE THING!”
I can’t fix it.
Words are empty and stupid and insulting.
I cried on my walk to the corner store tonight. I cry alot.
My therapist and I agree, that I do a good job of compartmentalizing all my negative feelings, about my cancer experience. Sometimes, though, they sneak past me.When they do, they completely overwhelm me, and I’m not very good at coping with them. It feels like a free fall. Out of control. I need to work on that. Thank God she’s willing to do phone sessions with me–as I have a nervous breakdown in a practice room on campus–hey, they ain’t just for playing music! The feelings are ugly, and I don’t like how they make me feel. I want to keep them pushed as far away from myself as possible.
I live in desperate fear of relapse, because I have so much unfinished business. I live in desperate fear of treatment, because I was so destroyed by it, the first time around. I live in desperate fear of burying “cancer friends,” because they are my lifeline. I’m not afraid of dying myself, but I live in desperate fear of everything that comes before, and of all the “taking away” that cancer does.
I’m standing on the edge of 5 years, and I’m more of a wreck than ever.