Tuesday, April 30, 2019

I'm Just Here for the Endorsements

What a warm welcome back to this space! Thank you guys for being here while I dust things off and clear out the cobwebs and find my voice again. Why did I go silent for so long? Didn't the metastatic breast cancer community still need advocates?

Am I just back because I want your attention (not to mention the bazillions of dollars in endorsements)?

All joking aside, I do want your attention. God knows cancer still needs advocates, especially in the metastatic community. But I also want to shed light on what it's like to survive what I thought was metastatic cancer -- even the ugly parts. Especially the ugly parts, so maybe they can be less ugly for those who come after me. (Because I would fucking love it if all my mets friends suddenly found out they didn't actually have tumors breaking their ribs, filling their lungs, invading their brains, that instead they, too, had an autoimmune disorder.)

I want to talk about the dark parts of facing a major identity change, even if that change is ultimately a positive one. Yay, no cancer! Go on your merry way, we've got other patients to treat! They include your friends, who will continue to die. You should be so HAPPY! I digress, but maybe in talking about it, the darkness can be less jarring and raw going forward.

For so long, I wasn't ready for that amount of processing here, even if I've alluded to some struggles. I wanted to wait until I'd been in therapy long enough not to just dump everything out here without a filter. You guys deserve a little bit of a filter.

Scan-day, December 2018
Also, I haven't exactly known what to say. Should I write that this past year has run me ragged and bowled me over with a strange mix of joy and sorrow all at once? Babies are amazing, exhausting little creatures. Then, seemingly overnight, they turn into toddlers who are bonkers and feisty, and ours also has the gift of fearlessness. She runs and climbs and tackles our cat or practices for the World Rugby Championships twelve hours a day until I think I might pass out from the effort of keeping up with her. In the middle of it she naps, and I am addicted to the sweaty curls at the back of her head when she wakes up. Wash, rinse, repeat.

Should I mention that more than once, I've broken down in sobs while rocking Noelle to sleep because I am immediately transported back to the fear I felt when Quinn was her age? That my brain frequently tells me I may only have a few days/weeks/months left with my children, probably because I spent 5 years thinking my time was severely limited? Is that normal? Are the nightmares?

And I'll pause to reflect on what I know is true: I am very lucky. Not only were my mets not actually tumor cells, but then my body grew something surprising and miraculous and beautiful, even after the assault of chemotherapy on my reproductive system. While I hope that part of my story -- my motherhood story -- offers a bit of hope and resilience about what our bodies are capable of, I know it will also be a painful reminder of what can't be for many of you. And I don't want you coming here to feel triggered. Nobody needs that, and I get it if you can't stick around.

My therapist believes I have PTSD, which I thought was only for soldiers who'd been in war. I don't even like the battle metaphors associated with cancer, but apparently the mental health outcome can be similar. I am working on new therapies to help, and mindfulness practices to lessen the severity and frequency of panic attacks. I am exercising daily, but like a good friend said recently, I can't spend all my time in the gym. I may need other tools. I'm not ruling out medication. I met with a new therapist who is recommending something called EMDR, and I'll write more about that soon.

Should I tell you that I've had to step away from social media upon realizing some people in my circle are no longer closeted bigots, and so I have occasionally missed the news that a friend has gone into hospice, or worse? Not to mention the woman I thought was a friend who seemingly faked having metastatic cancer and has rocked this community? That I still feel intensely and excruciatingly guilty that I appear to have survived am surviving cancer?

Do you want to know that I joined a board to lend my patient voice to improving diagnostic accuracy because medical mistakes kill as many people as breast cancer each year, and my story has a rare, healthier-than-I-started ending?

All of the above?

I do feel like I owe it to myself and my twelve loyal readers (hi, mom!) to write about the emotional fallout of learning of my misdiagnosis, becoming unexpectedly pregnant, and then parenting from a completely different perspective, albeit with somehow just as much anxiety.

It isn't surprising that enormous changes in identity can wreak havoc on one's mental health.

I also feel like I owe it to the MBC community to continue to advocate on behalf of the women and men who are still dying at an alarming rate. At HealtheVoices a few weeks ago, a woman said we need to find our tribe, and all I could think was, "What if your tribe keeps dying?" I looked at the ceiling for awhile to help me blink back tears. I miss my friends.

So I'll be ramping up my advocacy work this summer, and I hope to share my story in more ways, across more platforms, as I heal from the trauma of my misdiagnosis and rediscover myself. I've missed you guys.

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