It’s Saturday, one of my cherished days off from work. I’ve been trying to be kind to myself today. I’ve had a hard time sleeping lately, so for the past few days, I’ve once again resorted to taking a Benadryl (which is, as it happens, a pink pill) at bedtime, because it works better than Ambien, melatonin, warm milk, reading, or any of my other tricks when my restlessness is beyond them all. Thus, I woke up today, having had a splendid night’s sleep — the kind enhanced by knowing you don’t have to get up for work the next day — following on three nights of decent sleep, ready to get through an uncomplicated To-Do list. And yet, despite all that, as soon as I was vertical, I felt like I could collapse. The invisible, unpredictable, incomprehensible stone wall of fatigue hit me again, as it has so often since I was diagnosed. But because I’d slept well, I remembered for a change that I do still have Provigil, which temporarily but effectively shoves back the fatigue. So I took one. And it worked.
Insomnia and fatigue have been my companions almost nonstop for the past month. I managed to tame them today, but I am still slogging through the chill, relentless fog of grief, which has exacerbated them, which has been following me like a spectre since February 6th, the day Rachel died. I don’t have any medication for grief. And if I did, I don’t think I’d take it. I don’t want to disguise it or tame it or drown it with chemicals. No. It issues from my heart. It deserves my attentiveness.
I was supposed to be in New Jersey today, this weekend. I was supposed to be at Rachel’s house, with a handful of other blog sisters, laughing, snarking, eating pie, meeting some of these women in person for the first time, because that’s what Rachel had wanted, planned, arranged for. Because I was delighted by the prospect of seeing her again, in real life, after so many months. Of getting to meet Newman, her dog, in person, and giving him a good ol’ ear rub and backscratch. Of mercilessly deconstructing Komen, all things Putrid Pink, and the breast cancer culture in general. Of teaching those in attendence to sing my song parody “Sherpa Girls,” written in appreciation of all my blog sisters, in four-part harmony, maybe a little off-key, but no doubt enthusiastically, perhaps with a little cowbell accompaniment.
“Feisty Sherpas, snarky ones! You make blogging so much fun.
Oh, I love you truly, Sherpa Girls…”
Instead, I’m at home, stymied by loss, regret, the cruelty of timing. Instead, like Nancy described in her post today, I feel ‘sad, angry and cheated.’ Instead, I drove to New Jersey not today, like I was supposed to, but a month ago, to speak at Rachel’s Memorial Service.
It was raining that Saturday, softly, mistily, like tears barely held in check. On my way down, I cursed cancer for all the times I’d wanted to jump in the car and drive down to see her again before this, but didn’t, couldn’t. Because Rach was in the hospital yet again — dealing with collapsed lungs, pain, infections, having chemo again, dealing with all the miserable vagaries of mets, suffering the side effects of trying to beat them back and buy more time. Precious, precious time. Time when she might finally have a decent few days when she could have fun during a visit, feel more like a person than a dishrag, feel more like my friend and comrade than one of my homecare patients. So many potential road trips put off because of cancer, stolen because of cancer.
I cursed when I got to the first tollbooth on the highway, preparing to fish out my small bills and loose change. Then I realized that the transponder I had in my car — installed to get me over the toll bridges here in Rhode Island — worked all the way through New York and New Jersey. So, I cursed again as I sailed through the toll booths, angry at how easy it made the drive, how easy it would have made all those other drives I never got to take.
The thought of this weekend sat like lead in my heart all through Rachel’s service. When I got up to speak, I referred to it. When I referred to it, the loss of it, cancer’s theft of it, rose up, bitterly, mercilessly, in my throat. “We thought we had time,” I choked out. “We all thought we had more time.”
“And we were wrong.”
What is left to say?
Perhaps nothing. Except that we have to stop this.
A few weeks ago, another cyber sister sent me a message saying that she’d found a lump in her breast. She didn’t have insurance. She’d been turned away by the local program that was supposed to provide free screening and diagnostics for breast cancer, because, she was told, it might not be cancer, most lumps aren’t cancer, it might be nothing, she wasn’t ‘sick’ enough yet. She scrambled to arrange a diagnostic mammogram and biopsy at her own expense. A week later, she was told her biopsy was positive.
I’m so tired of this. It’s hard not to feel deflated, defeated, beaten. When I looked back over my blog archives, I realized how many times I’ve had to say the same things over and over again, how many times I’ve railed about the same themes, the same inadequacies in our healthcare system, in our research priorities, in the pinkwashed breast cancer culture. When is this all going to change? When is breast cancer going to end? When is it going to stop stealing my sleep, my energy, my peace, my friends?
I don’t know. But I do know that we cannot stop. We here in the blogosphere, in the advocacy and activist communities, on the ground, in cyberspace, wherever we are, we cannot stop. We have to keep speaking, shouting, louder, longer. For Rachel. For all of us.
Thank you, Sarah & Gayle, for your friendship and for this video.
Thank you, all my cyber sisters and brothers, for getting — and sharing — the message.