Time and Loss

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.

Sherpa Girls – Audio Link

“Feisty Sherpas, snarky ones! You make blogging so much fun.
Oh, I love you truly, Sherpa Girls…”

Sherpa Girls, 5/14/11, lyrics

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.

Rachel Cheetham Moro from Sarah Horton on Vimeo.

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.

This entry was written by Kathi, posted on Saturday, March 10, 2012 at 11:03 pm, filed under Life & Mortality, Making A Difference, Metastastatic Breast Cancer and tagged , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

13 Responses to “Time and Loss”

  1. Kathi, this was a most awesome post. It is sad and lovely and wrenching and brilliant.

    I LOVE the singing Sherpa girls.

    The void left by Rachel is palpable on every BC blogger’s blog. And you are right… we cannot stop speaking our truth, fighting the good fight, waging our private wars, getting the word out. Because. Everyone. Is. Affected. By. Cancer. And will continue to be affected. By cancer.

    Together the pitch of our collective voices will shatter that pink ceiling.


  2. Kath I feel your pain and your heartache. I watched my mother gradually become a whisper of her former self due to breast cancer and the seemingly inevitable mets. My mother lived under the breast cancer cloud for over forty years. She died at home in the arms of her daughters surrounded by her beloved books last November. It is hard to be responsible for the house while we await probate. It is hard to walk into the empty shell of the place that was so vibrant with her eccentricities. It is so hard to know the great grandson she tried to even hold off death to meet never did get to meet her. She desperately wanted to see brand new life one last time before TIME took her own life away. I am so sad for all those things. And I HATE cancer too. 🙁

  3. I love the way you’ve written this Kathi, the continuous journeying to New Jersey. I think you’ve been writing it in your restless sleeps this past month. I wish you peace, of course, but what good does wishing do?

    My heart is with all of you who are not where you were meant to be this weekend. I think you all are there, with Rach, in your heads and hearts. You have all been cheated.

    And yes, we do have to continue doing all we can to stop this epidemic. And it’s not just political with the pink. Beyond the pink ceiling is the real ceiling. We’re going to have to get political with the cancer industry and with the politicians. And we’ll need all your snark and energy for that Kathi. xx

  4. Hi,

    I found your blog via Nancy’s Point. I never knew Rachel, but I want to offer my condolences on the loss of your dear friend.

    Wishing you peace and strength on your journey,

    Casey B

  5. Hi Kathi, first off, I love the song. I’m trying to remember the first time I saw cyber sisters referred to as “Sherpas.” In a Twitter stream once upon a time. I think it may have been Rachel. It seems like something she would say.

    Anyway, thinkng of Rachel and sherpas has brought about the sad reality. I’m so sorry your weekend didn’t happen. No words other than that sucks, cancer sucks and I’m so sick of it. You’re right, we have to keep speaking out, louder. We have too. We can’t let cancer steal from us anymore. Love to you.

  6. kathi,
    made me cry. I wish a cure for all, and keep the snark alive

  7. Thank you, thank you, Sherpa Girls & Boys!

    Renn, I love your last line, “Together the pitch of our collective voices will shatter that pink ceiling.” That says it all.

    Dear Tara, what can I say? Knowing how much you went through with your mom, watching her be slowly stolen away by cancer. She was so lucky to have you & your whole family, that you were all brave enough & loving enough to be there for her to the end. Big hugs to you.

    Ronnie, thank you. I think you’re right about this post. It’s been bumping around in my heart since the day of Rach’s memorial service. I think I and Sarah and all of us who were supposed to be in NJ this weekend have just had to grit our teeth and get through this weekend, so we could regroup and figure out where to go from here. I think my snark may finally be starting to recover now.

    Thank you, Casey, for your kindness.

    Stacey, the whole Sherpa thing makes me smile. I think I first saw CB use it on Twitter, but I’m not sure who started it either. Although world traveler Rach may well have been the one. I have to credit Jody, though, with giving me the idea for the song. After I’d posted 1 or 2 other song parodies, she’s the one who said we Sherpa girls needed one, too, like the Beach Boys’ ‘Surfer Girls.’ And that was it. If we form a singing group, maybe the Bitch Girls??

    Thanks, Lee. We need a cure for all cancer, for sure. xoxo

  8. Kathi,
    I have no words that seem adequate here… Like you, I’ve been fighting with the insomnia beast too. I’m exhausted at times, yet unable to rest peacefully it seems because my mind keeps playing things over and over. Maybe after this weekend totally passes, we’ll be able to move forward a bit more.

    Your words at the service were so poignant, “We thought we had time.”

    Now we must take time whenever we can to keep writing, to keep speaking out, to keep advocating on behalf of Rachel and all the others. We’ll do it together, all of us. We have to. Hugs to you my friend.

  9. Nancy, I think [she said cautiously] that I am starting to feel a little better now, after writing this. This weekend has been looming all month for those of us who were planning to be there. Maybe now, at last, I’ll recover my broken snark. It’s such a comfort to know that our Sherpas understand. Hugs back.

  10. Kathi,
    Were your ears burning on Friday? I was on the phone with Tobey and we mentioned your name (in the same sentence as words like amazing, fabulous, and, well– you get the point). I hate reading the words, “We thought we had time.” I hope you are feeling better…. I have NO energy and I know it’s likely my own bout of PTSD. I feel like getting into bed and staying there….. Until I feel like getting out….
    Big hugs to you…

  11. AM, you are so sweet…I haven’t been on Twitter much lately, where I connect with Tobey, but I owe her a text or an email or a tweet.

    Gawd, I sure know about that PTSD. I think we all end up traumatized by our cancer experience in one way or another. And this past month has been traumatizing all over again. Sigh. I honestly don’t know how I’ve managed to go to work or function these past weeks. Not very ably, that’s for sure. Hugs to you, too.

  12. Kathi,

    What a beautiful, poignant post, and I love the Sherpa Girls!!

    I’m sorry that cancer cheated all of you out of what would’ve been a great weekend. I’m sorry that cancer exists at all. I’m sorry there wasn’t enough time.

    Hugs to you, my friend.

  13. Dear Beth, cancer has cheated so many of us, hasn’t it? It has no respect for our notions of time. I’m prompted to quote your last post & say, “Hug your daughter.” xoxo

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