This past winter, I had the opportunity to help co-lead a six-part discussion, a “collective sensemaking” series that was a collaboration between Root Quarterly and Old Swedes’ Episcopal Church. It’s a place in my neighborhood I’ve played music festivals and pancake brunches (and even my friend Chris’s ordination as a priest), held RQ events and birthday parties, taken my dog to run, sat up late night with the Sextons—my friends Jim and Paula—around the fire pit in their backyard, and even occasionally gone to the services! I know, I know. That’s not like me but I love that place and it hasn’t kicked me out yet for not being an official Christian.
We explored societal grief and collective grief, personal grief, forgiveness, hope, and the idea of sabbath. Of true disconnection and rest. Of letting yourself into a place outside of time, in the way we normally experience it.
And you know what this experience of being smacked down with cancer has taught me?
I have no idea how to rest.
You probably don’t either. But back to that in a minute to get the medical update over.
THE MEDICAL UPDATE
I found out this past Monday, and confirmed with my surgeon’s office at my May 1 appointment, that they got clear margins around the mass. This is great news, because it means that unless I have a recurrence, they don’t have to cut me up again. The scar is about two inches long, and it’s healing nicely. Just that one will do, thank you very much.
The second good news is that they tested my lymph nodes, and there is no cancer there either—it hasn’t spread. The Beastie was growing, but it hadn’t escaped its initial lair in one of my lobules yet.
This was a big, big relief. (There is a lot of patience and waiting in all of this).
However: the pathology reports were also inconclusive on markers for HERS2, which is a protein that feeds The Beastie. If your results are positive, you have to smack it down with chemotherapy. It doesn’t matter if you have a lumpectomy or mastectomy—if you have too much of that protein, you’re going to get a port punched into your chest that allows access to your jugular vein for them to fill the Beastie’s mouth with poison.
Once again, I hate body horror and the idea of the port, which at least three of my friends are dealing with right now, was a nasty one. There are a lot of little things you don’t expect that cause a bunch of stress. But as my partner says, if you let yourself be consumed with anxiety over something you can’t control, you’re just punishing yourself. As I have not yet achieved yogi status, I was still pretty anxious.
And so the ensuing days, well, they were a bit of a nailbiter.
It did give me a good idea for a Halloween costume: Sexy Uncle Fester. I’d already started brainstorming ways to make a lightbulb light up when I stuck it in my mouth. Half of my family are engineers, mechanics, and tinkerers of all kinds so there was no way this would not be part of my costume. Beastie or no Beastie, I am winning at Halloween.
Alas, you’re probably going to get a Basic Bitch Sexy Witch, because the second test they ran came back yesterday negative. No chemo! No chemo! No chemo! This is wonderful news.
I’M NOT RESTING. NO ONE IS RESTING. INSURANCE BLOWS.
Now, back to that rest thing.
I just took two weeks off in a row for the first time in about 8 years, and that was only because of The Beastie and the surgery, and that’s ridiculous.
It took nearly 10 days of really slowing down to really feel what really slowing down meant. At some point early this week, I existed in some sort of equilibrium that I haven’t experienced in a really long time. It was transformative in some ways. I hope you’ll get to do it at some point. I really do. (But not because of a Beastie of some kind, because you’re being kind to yourself.)
By yesterday, Thursday afternoon, when I’d starting looking into the next part of my care, it took only about two hours for any peace of mind I’d developed to be destroyed by dealing with insurance and next steps.
The insurance company is already trying to deny parts of what they did pre-surgey and during surgery (the Savi Seed placement for instance), because my primary care physician, who doesn’t do oncology, much less radiation oncology, didn’t send a referral.
So I have 90 days to fix that in their system. More phone calls and paperwork.
I have also learned that rather than walking over to Penn for my radiation treatments, I’ll be getting in car to go to Camden, or Chester County, or Roxborough, or up at Einstein, because if I got to Penn for radiation, I have to cough up the rest of a $6,000 deductible, and pay 10% of the bill on top of that. So Camden here I come. It will be about a three-hour situation every day for a month-ish.
Now I just have to figure out whether I can work with an oncologist at Penn, and have my treatments at a hospital that’s covered. I will work this out. We have a car, we can borrow cars on days Walter, my partner, needs it for work. And there are people already offering to drive me.
The upshot is: If you are a woman with breast cancer in Philadelphia and you have decent insurance via Independence Blue Cross, and you don’t have a flexible work arrangement, and you don’t have a car, whether you’ve gotten past the first hurdle of surgery or not, the insurance company will be intent on screwing you over anyway.
Some things never change. When my mother had her double mastectomy 20 years ago, someone didn’t put a referral in properly, and while she was recovering, she was also fighting with them. She got on the phone at some point with an unhelpful customer service person who said to her, “Hold on. What did you have done that day anyway? Did you have something cut off?”
Did you have something cut off? Are you kidding me?
Her response?
“Two breasts. Does that count?”
I love my mom.
They eventually sorted it. I will eventually sort it. But apparently I’m going to have to watch my claims like a hawk, I’m not sure who my oncologist will be, I don’t yet know when or where I’ll be having radiation, and none of this is particularly restful, so thank God I just took two weeks off.
In the meantime, I have a magazine issue to get to print that is very late because of The Beastie. I am about to send out a note to the entire RQ list to let them know. I have grant proposals to put in (And we just got a grant from the Philadelphia Cultural Fund!). Business plans to get back to. Issues and events to plan—please join us on May 27 for the Memorial Dei picnic at Old Swedes. It will be lovely.
For now, it’s back to work, fight with insurance, get a care plan together, do the plan.
Thank God I’m a pain in the ass and know how to advocate for myself.
Learning how to rest is something I still have to learn.
Love,
Heather
“Ways You Can Help” is on the main Brouhaha Page.