If love is enough, I'll make it.

Photo copyright Aji, 2021; all rights reserved.

All right. Wings thinks I need to post this, in part because I have at least a week yet, and maybe two, to find out whether I'm definitely going to live or . . . maybe notsomuch. But my girl is coming around again, a lot. She always does that when I need her. So maybe now is that time.

Caveats and ground rules: This is not fishing for sympathy. Honestly, I don't want it. I do want people to be respectful of my situation and not add to my load. But sympathy? I'm painfully aware that there are a lot of people out there who, even if this turns out to be the worst possible scenario, still have it far worse than I do. And if it does turn out to be bad news? Well, I've been lucky enough, for a few years, anyway, to have the one thing I always wanted and was always told I never would: someone who loves me unequivocally, who loves me for me, someone who I love in return just as fiercely and as completely. If I never have anything else in this world, including time, I have at long last had that.

But. This is just as much not a request for advice, and people who do that will get blocked. I don't need it. You can't help me that way. Chances are I know far more about this than you do (we've already established that I know more about it than certain doctors, which I've come to learn from the literature is not uncommon, apparently). If it's what we think, I'll wind up with a medical team, and my regular doctor, and considering how many people I've had to advocate for medically my whole life, I know the what and the how and I will certainly be doing it.

Yeah, I know, y'all already think I'm a bitch, but I am sick unto very death [yes, I can joke about it] of being patronized by people who have never stood in my mocs and have absolutely no idea what I need. There are no saviors. There's only mutual aid and modern medicine and whatever powers my and Wings's traditions hold for healing. So no performative nonsense, hmm? You do it, we're done. [And if I weren't at my choking point on that kind of terrible colonial behavior at our expense, we wouldn't even need to have this conversation, but here we are.]

So. Here's the deal.

There is a far too great chance that I have inflammatory breast cancer.

It's called that, IBC, carcinomic mastitis, etc. What it is NOT is "breast cancer" the way you're envisioning. It is something far more fast-moving, aggressive, and deadly than most ordinary breast cancers, and yes, that includes metastatic breast cancer involving certain genes: When IBC is diagnosed, it is by definition at best Stage 3, often Stage 4. That means Stages 0 (yes, there's such a thing), 1, and 2 don't even exist for this. Once you're DX'd, you're already at risk of dying. DX'd at Stage 3, only 40% of people are still alive in five years. If I'm unlucky enough to have it and to be DX'd as already at Stage 4? Only 21% of people DX'd already at Stage 4 are still alive within two years.

That's a pretty lousy outlook, by any standard.

If you want to know the gory details to date, read on over the jump.

As always, I've done my research already, had done it before I ever saw a medical professional, wait times being what they are under this system that privileges death far more than life. It sounds compulsive, but actually it's sheer force of long habit: When you have multiple autoimmune disease in a colonial culture that insists that you're at fault, you have to know your medical condition far better than the doctors do. The same holds true when you have a spouse with a serious chronic illness. It also holds when you've cared for three elders over the course of your life, all of them both chronically and acutely ill. This system that monetizes so-called "health care," that specifically and deliberately profiteers off suffering and death, requires it, at least if you're doing your job on any of those fronts, and I did and do.

More than that, though, I was already familiar with multiple types of cancers, through family and friends having it, and through my mother's work with one of the big capitalist charities when she was alive. You get to meet a lot of survivors that way (and non-survivors, too), and while they also profit from people's suffering and death, they don't actually do much for them. They sure capitalized on my fundraising skills, though. But anyway, I think I've known people with every single form of breast cancer that exists, and that includes IBC.

And IBC is a whole different animal.

Most breast cancers are lobular or ductal cancers of one form or another, and they may be metastatic or not, but they all stem from the same thing: a cancerous mass, or tumor. If you can catch it still "in situ," get all of it before anything metastasizes? You're actually in pretty good shape these days. So when I was in my mid-twenties and discovered a mass of a few centimeters' size in my right breast, I got it biopsied. Three times, all factors different and accounted for, and still they couldn't tell me whether it was cancerous or not. The medical personnel and lab personnel were all flabbergasted; they'd never seen anything like it, and while they controlled for everything on the second fine-needle aspiration, by the third biopsy, a core-needle extraction, they were determined to make sure that it was different people, different day of the week, different time of day, etc. Still the same astronomically-unlikely form of "inconclusive."

Eventually, they forced me to get it removed. This was in the days before there was a Stage 0. Back then, it was either malignant or benign, and once they took the mass apart, they used the words they did in those days: "potentially precancerous." "It's a good thing you got it removed."

And that was that.

Fast-forward to May 2nd of this year. [Now, I normally check my breasts on or around the first of the month, because I'm a few years past what in my family is an early menopause, and on May 1st, everything was, to all appearances, normal. Fortunately, I had that baseline with which to go into all of this.]

No matter my pain levels, I still do my workout every evening. It's nothing much, just some floor work and 50-lb resistance bands, and it's less about losing weight than it is about keeping my constantly dislocating and locking joints as flexible as humanly possible. And on May 2nd, when I finished, I was taking off my workout clothes as I walked toward the bathroom, and when I took my bra off . . . it felt like someone had punched me in the side of the right breast. Hard. Deep.

My first thought was my underwire, but no, that was fine. So I did a quick self-exam, and it felt a little odd, but  . . . ::shrug:: I've always had dense breast tissue and very fibrocystic breasts, so maybe it was nothing. But I figured I'd keep a watchful eye on it.

Nothing changed noticeably until the early-morning hours of May 6th, 1:30 AM, to be exact. I had gotten up to go to the bathroom, and as I stood washing my hands, I noticed a giant, angry white line all the way across the right side of it. Looked like a stretch mark, except not taut enough, and too shiny. By morning, it was fainter, but I could still see it, and the more worrisome thing was that on that side of my breast, the skin had begun to dimple.

Within the next 2-3 days, the dimpling had spread, and shadowing of color (not red; more bruised-looking) had too, and it was painful. It was also intermittently hot and itchy, and there was some intermittent slight nipple retraction. The skin texture was odd, itchy and heavy-feeling, and the skin on the nipple was almost crinkly and yellowed, like an old bruise that hasn't faded yet. And every morning when I got up, every night when I took my bra off, more of those lines and pockets of glowing yellowish-white against my skin. Not stretch marks.

Lymphedema.

The thing about IBC is that, as I said, there's [at least usually, and especially early on] no mass. No tumor, but not even a mass, because that's not what this beast is. What it IS is a condition in which metastatic cells flow into the lymph channels under the arm, lymph channels which feed down into breast tissue, and they clog it. Hence the lymphedema (lymph fluid buildup), the heat, the itching, the irritation. And it's that clogging that causes the skin dimpling, which occurs in a pattern called peau d'orange (because it looks like an orange peel). I have that dimpling on all sides of my right breast now, and within two weeks, it had spread all the way across it, seemingly making for the left one now. No skin changes there yet, but pain and itching intermittently, and some swelling, although nothing like the swelling I now have on the right.

Now, remember I used the term carcinomic mastitis? Literally, cancerous inflammation of the breast, which is what this lymph garbage is. There's another form of mastitis, too: infectious mastitis. However, that is confined almost exclusively to new mothers who are breastfeeding or at least lactating. I've never been either; never had a child of my own; certainly not doing any of those things now. And it's vanishingly rare in menopausal people, a club in which I've held membership for several years now.

IBC tends to hit people (anyone, but by far it's mostly women/femmes/folks AFAB) in their late forties through their fifties. I'm still in my fifties. It hits Black women harder than white ones, with predictably worse outcomes; AA/PI folks, too. No real data on rates in Native women, natch, because we're left out of everything as it is. But despite the fact that it was my white grandmother who died of complications from recurrent breast cancer, it's already abundantly clear to me that the care I get will track my Native and Black ethnicities if I don't force the issue, so everyone involved best be prepared for me to do exactly that.

We are now six weeks into this process, and I've mostly gotten the brushoff from people saying, "There's no mass." Well, no shit, Sherlock; that wasn't why I came to you in the first place. One of the doctors, though, has made it clear that she's very concerned. And if it's not infectious mastitis (it isn't; I've already done the antibiotics/topical protocols, and it's only gotten worse, not better), then it's either IBC or something no one can identify.

Knowing that if I get a Stage 4 DX, there's a 79% chance I'm not here in two years? I'll take "something no one can identify" and love it . . . provided that they've actually ruled out IBC.

To date I've had bilateral mammograms and ultrasounds; next, I go in for a bilateral breast MRI, which is the most sensitive testing they have here (not here, but in Santa Fe, because this requires travel) for breast imaging. I'll be getting it both without and with contrast, which for me carries the possibility of a nasty reaction, which should tell everyone something about how bloody seriously I'm taking all of this, that I'm willing to risk it. Meanwhile, I'm living daily with the pain involved, and the other inflammatory responses, and the lymphedema and apparently-now-permanent swelling, and all the fear.

If it is IBC? I've got a long, hard road ahead. And I've already explained what the survival rate is, even with that. But the standard treatment is chemotherapy, radical mastectomy with lymph node removal, and then probably radiation. Any one of those is a bitch. All three are worse. But I have two other problems lurking.

That thyroid tumor I have? The one they DX'd as medullary-slash-Hürthle-cell-carcinoma for four months and then retracted the DX? Welp, the tumor is still there (yes, it's a tumor, even if it's an adenoma rather than a carcinoma). And it's apparently growing again. It's more readily palpated, and more visible, now in the form of four separate lumps in the middle and right side of my neck, even if they all supposedly are a result of the same mass.

Oh, and then there are the liver tumors. I have two; they were found at the same time as the thyroid tumor. They said "presumed hemangiomas," which are masses of inward-turning tangled blood vessels that are usually benign, and usually more dangerous to biopsy than not, unless they're showing signs of growth/metastasis. Except that ordinary breast cancer usually spreads first to liver, then thyroid. IBC? That kind of spread on steroids.

Oh, and there's the cost, which is probably partly why they want to dismiss this and pretend nothing exists. A mastectomy tends to run between $37K and $50K, just for one breast, and that's only the cost of the surgeon removing it. That's not all the other ancillary costs for the doctors, for the hospital, for everything. Dual radical mastectomy with lymph nodes? Probably well over $100K JUST for that part of it. Then there's chemo, easily tens of thousands of dollars, cash on the barrelhead. One course, with decent insurance (that I don't have; not any because I can't afford the premiums) is around $7,500 for the basic shit. For the high-end stuff, which is usually what IBC requires? Up to $25,500. Radiation, also tens of thousands of dollars.

I don't dare think too much about that. If I start to cry, I'll never stop. I've already faced, initially entirely alone, what I knew from experience that this looks exactly like, what it means, what the odds are, what lies ahead. I had to deal with the prospect of terrible pain and illness, of mutilation, of a very early death. I had to get my own head around it before I could even begin to tell Wings that there might be anything wrong, and I still don't dare start crying.

So I'm feeling vulnerable, and very, very at risk on a whole bunch of fronts right now. And if it is IBC? Every day without a DX is a day lost, another day potentially hastening my death. And for the first time in my life, I have everything to live for.

My red-tailed girl comes to see me daily. I have Wings in my corner; he has my back on everything. And if that's what it is? We are going to fight. If love is enough, I'll make it.

All content, including photos and text, are copyright Wings and Aji, 2021; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner.