CW: Cancer stuff update

Hey, folks.

So, this is gonna get long, but I saw my surgeon on Wednesday and my shiny new medical oncologist on Friday, and the filet (you see what I did there) is that the incisions are healing well, and my tumor samples are being sent for oncotesting (basically genetic analysis of Barry to see what kind of a little bastard he is).

That’s assuming my insurance will pay for it, obviously. Oncotyping isn’t cheap, and the oncologist said that if they put up an argument, his office will take care of fighting with them about it. If we have to pay out of pocket, we will, I guess, though. At least it will be tax-deductible.

I’m again incredibly grateful that we live in post-ACA America, and in particular in Massachusetts, which was a national leader in making health insurance available to even the self-employed. Healthcare is a human right and should be paid for by our taxes, just like primary education. It is also essential infrastructure, like roads and fire departments.

My out of pocket for all this so far has been about $500, which is less than 10% of the cost that insurance is covering.

I have an appointment with a genetic counselor on Tuesday to see if it seems reasonable to do genetic analysis of me (s opposed to Barry), and then on Wednesday I have a telehealth call with my PCP to check in with her and bring her up to speed.

My surgeon was extremely positive, which I am trying to cling to, because honestly the prospect of chemo is something I’d really like to avoid.

He (the surgeon) seemed to think, based on his experience, that what was likely was that I would be offered hormone therapy and referred to radiation. He wants to see me again in six months for a followup, at which point I should also have a post-radiation mammogram done, and another one in six months after that. If both of those are clear and my genetic testing doesn’t turn up anything nasty (I know that I am both BRCA1 and -2 negative, from 23-and-me, but there are plenty of other nasty mutations out there.) I should be okay to go back to yearly screenings.

He’s not an oncologist, of course. Just a guy who has been removing tumors since I was in college. You should see my incisions: with one exception they’re nearly invisible already. This guy is fucking good and extremely gentle, and he said that if I need further interventions (such as a chemo port) he will be the one to do them. Which is a small relief in a scary process that feels endless right now.

I had three waves of bruising as blood worked its way to the surface, and the third one was the most painful. (I was on vicodin for the first one so my perception there is skewed!) It's finally fading, but now I have a new appreciation for dependent lividity.

Since I have very little family history of cancer (we’re a diabetes and heart disease family, yay) I am not too terrified that I’ll need more intensive screening and intervention moving forward. I have a lot of childhood exposure to carcinogens (Everybody smoked in the 70s) and had a pretty disastrous childhood in terms of personal trauma, and that stuff does add up, epigentically. Also, I’m overweight, which increases estrogen load in the body, and I started my period quite early and have been on hormonal birth control off and on since I turned 18. So I’m hopeful that these are the risk factors that account for the early (by breast cancer standards) lesion.

If it turns out I have something horrible hiding in my DNA, well, then we might be looking at a radical surgical intervention (i.e., double mastectomy and reconstruction) and chemical sterilization and a bunch of other stuff I don’t really want to go through.

I guess if it happens it’ll mean I get to pick the dimensions of my post-surgical boobs, though, which I wouldn’t mind. It’s never been worth surgery and recovery to me to get a reduction when I can just strap the fuckers down as need be, but I haven’t been a C cup since sophomore year in college and honestly that was plenty of frontage for my needs. I wouldn’t mind going back there, if the world conspires.

The oncotyping will probably take about two weeks. I have appointments with medical and radiation oncology for the end of that week and by then I really hope this looming uncertainty will de-loom and resolve into the next stage of action.

Once all those hoops are jumped through, medical oncology will decide if they are going to recommend chemo or hand me a bottle of tamoxifen and ship me off to radiation with a pat on the back.

I am really, really rooting for #2 here. Also for a normal CAT scan. Which I am not too worried about, but I wasn’t worried about my mammogram either, and look where that got me.

I am feeling a lot of frustration, anxiety, and grumpiness over the endless series of Pending Things interrupting my workflow and causing me stress. (I am somebody who doesn’t deal really well with Pending Things.) I had managed to resign myself to spending six weeks doing radiation, which is a full time job when you consider the commute—it’s five days a week for six weeks.

Chemo would be at least three months, but at least oncotyping means they can use exactly the right poison to murder Barry more than they murder me, and it’s less time in the car, as the infusions are not, thank cod, every day. More time lying on the couch feeling miserable, however. The medical oncologist thinks the odds are largely in my favor on the chemo front: he just wants me to be prepared in case they have to go that way, because if the cancer does metastasize widely, that’s not, as he put it, “considered curable.”

I would not love chemo, because chemo sucks. And because I have a book to write, and because of the perversity of the universe an exciting new project has materialized on the horizon that will involve some intense and focused work.

Sigh.

Well, on the plus side, I managed to stuff my poor boobs into a sports bra (the left one is still pretty swollen, but much less tender, and the swelling has gone from “generalized across the whole installment” to “palpable lumps” and I managed to sleep without a bra last night, which my irritated back and underarm and bra-band areas found incredibly soothing. (Airflow good!)

So I think I can actually ride this week as well, which I am really, really looking forward to. So much of my and Ormr’s relationship has been marked by one or the other of us being injured, man. It’ll be nice to hit the autumn trails for a few weeks before whatever the next thing is begins, and look at all the orange leaves and pretty mushrooms.

I hope this finds you well, and there will be a more detailed horse update coming on Monday for subscribers.

Best,

Bear