All the Worst Cancer Lessons

talking shitOf course it’s the toilet topics that drag me back to this abandoned blog.

Yes, I’m referring to the “poop plume” reports that were everywhere last week (or was it the week before???). You know what I’m talking about, right? That when you flush a toilet all these microscopic particles rise into the air, and if those particles are from someone with COVID, well, YOU—the person also in the public restroom—could get infected. This is the reason I refused to use a public restroom since March. I knew this. I knew it because just prior to entering into chemo treatment I had to take a “chemo class” in which the importance of closing the toilet lid was taught. Hell, I actually knew it before from an article I’d read years before. But I confess, I didn’t remember it until I was sitting in that class. Didn’t matter; I’ve always closed the lid and kept it shut. I dislike open toilets—always have.

My point is, this was just another thing in a long list of stuff that cancer patients, current and former, learned from having cancer. And I was just like, ENOUGH!  

Yes, I saw right away, as shut-downs began, all these “lessons” from cancer were going to come into play. I kicked myself for not having written my long promised (threatened?) “shitty” cancer lessons listicle. And then my brain and soul shut down in panic. So, I was quiet for a bit—I just could not bear to read any of the cancer-COVID pieces.

The first stupid lesson, that I momentarily forgot—I made a cancer-rookie mistake—was the “marathon-not-a-sprint” error. You know what I mean—that thing we as cancer patients experience in the beginning. All the communities want to “help”, to “do something”, and it’s this mad rush, this outpouring of generosity that cannot possibly be sustained. Kind of like how everyone buys cancer patients food and books right after diagnosis, but after a year or so of treatment, when some of us need help the most, everyone disappears.

I’m ashamed to say I took part in that mad rush in the first weeks myself. I was just NOT grasping the scope of a true pandemic. I made myself super busy, trying to collect and report info about how kids in need could get free lunches with schools closed. This was a slice of my social media management job I do for a non-profit. I was in a frenzy trying to collate all the random resources popping up—because it was a mess. Just organizations and businesses all doing their own thing—no structure.  It took me a few days then I realized it: this will die down. This outpouring will end with a whimper. And it is NOT my place to force structure on it, at any time.

So, there is the “close the toilet lid” lesson, and the “marathon-not-a-sprint” lesson. What are some others that I recognized—with a stab into my heart every single time?

Let’s see—there is the whole “language” thing. The framework applied to COVID as “enemy” (it’s not a sentient being, therefore not capable of evil intent, but whatever!), this situation as a “war”, and countless store signs urging us to be #MarylandStrong (or whatever town or province is applicable). Part of the language games, naturally, is the labeling of “heroes”. Because we need heroes in a war, right? Predictably, then came those who rejected the label of hero—not that I blame them at all. Healthcare workers didn’t want the label, they wanted PPE. Grocery workers didn’t want the label, they wanted better pay. It was just….my entire cancer experience played out on some grand scale, inescapable.

And yes, the conspiracy theories kicked in rather quick, didn’t they? And the anti-vaxxers who like to come into cancer culture and make a mess, well, they are still messing in COVID.

Worst of all for me—which will have to be a future, separate, blog post—is the economic inequality. Not just that, but the fact that people are so inexcusably ignorant about it. It’s always so painful to read something written by a musician I admire in which they stupidly say “we’re all in this together.” No, just—NO.

I guess I’m just frustrated reading and hearing so many people on the news say something we as cancer patients have known for so long. I remember listening to one of my regular pods and the hosts discussing how shocked, shocked!!, I tell you, that someone died of COVID at age 29 but when it was revealed she was a bit overweight, all the “patient blame” started in. DUH! How many times have cancer patients talked about that (see here)?!

It just proved to me, once again, that until some people experience a thing up close and personal, they just…don’t get it.

I could dive deeper into that previous sentence, what with all the privileged germ carriers invading my resort town, all the nastiness taking place…but I just don’t have the stomach for it right now. It really is too much.

So that’s where I am right now. Totally “triggered”. Trying to hang onto a sliver of sanity. Exposing myself to the worst of this whole thing in my political volunteering, then healing myself with my one remaining paying gig creating “uplifting” social media posts. (Crazy, right? Me, the absolute Curmudgeon creating that kind of thing! But I do it!)

Until next time….when I come back here to scream about my biggest and worst fear, which has been magnified by the pandemic.

Peace to you.  

How Did He Recognize Me When I’ve Changed So Much?

The other day during my dog walking duties, a large black SUV pulled up next to me. I run into lots of people in each of the neighborhoods in which I house/pet sit, so I was not alarmed—it’s usually someone who knows the dog I’m walking. I was shocked to look up to see the husband of a former co-worker, neither of whom I’ve seen in over 6 years. He’d aged a little so it took me a second or two to recognize him.  Yet, he recognized me from behind (and I was wearing bulky layers, long coat covering my ass, so get your mind outta the gutter), from down the street.

Since I lost my hair in chemo, and it continues to come back soooo sllooowwwly, I’ve felt incognito. (Actually, I’d like to be incognito, for a number of reasons, but that is another post.) I hated my short, super-curly (like Gene Wilder or Tom Hiddleston curly) hair so much that when people who had not seen me in a while (and did not know about my cancer) would mention my short hair, I was quick to say I’d had chemo…like OMG you don’t think I’d have this hairstyle on purpose do you?!!

But I realize that I’ve changed so much mentally that I’m kind of surprised when people I associated with years prior to diagnoses know me. I guess I look close enough to how I looked before that I am recognizable, but me, the real me, has changed, all because in split second in 2010 I moved from the land of the well to Cancer Land. Even though I currently have NED, I am still a resident. As long as I have to keep my various oncology doctors in the contact list in my phone, I feel like I am under their care (especially since I still see them twice a year—two times too much). I look forward to the day I can delete oncologists from my phone’s contact list.

What to do about my tattoo

Got a design sketch proposal from a tattoo artist to cover my lumpectomy scar. A little background: I never got a tattoo in my college years (the 90s, when ALL twenty-somethings got them to express…er, individuality); I had problems committing to a picture I’d want on my body for the rest of my life (oh fuck it, let’s be real, I have problems with commitment in general). But now, I have numerous little blue dot tattoos that mapped me for radiation, and I have a substantial amount of tissue taken from my left breast, no nipple, and a 4 inch horizontal scar that even reconstruction will not hide. So I decided no reconstruction—I do not want a permanently erect nipple, and I’d have to get the areola tattooed on anyway. So why not do something else? So I’m getting the Red Hot Chili Peppers band logo put on there (I’ve been a fan for over 20 years without faltering, incredibly, so I guess I can make this commitment) with the words “If you’re going through hell, keep going”. The quote may or may not be from Churchill. I’d prefer it to be definitely his, but, so what, it’s a good quote that accurately sums stuff up for me. It is so much better than my other choices, both by humorist Dave Barry: “Scientists now believe that the primary biological function of breasts is to make males stupid,” and my personal mantra: “What I look forward to is continued immaturity followed by death.”

So now, just gotta decide with the artist about the placement of the quote—around the logo, or through it? After 2 years of making health decisions that will affect my survivability and quality of life, I’m ok with this decision not having to be so momentous.

Cancer anniversary

A little over two years ago, a few days before my 39th birthday, I was informed that I had breast cancer. My 50-year-old aunt had been diagnosed that summer, so when I had my annual gyno, I demanded my first mammogram, even though I was under the recommended age of 40. Got the mammo a week later, with nearly an immediate result: negative—the all clear. My relief was short lived. About 3 weeks later I noticed my nipple had turned in on itself (the tumor began directly under it, making it difficult to detect). So the mammo was that rare thing: a false negative. Ultimately, after many tests I learn this: Breast Cancer Stage 3, ER and PR negative, HER2 positive (an aggressive form of breast cancer but not as much as being negative in all 3), a very large tumor that had not yet metastasized, incredibly.

From October of 2010 to January 13, 2012, I spent most of my time in and out of medical facilities. Chemo first to shrink the tumor and make surgery less extensive, then surgery, then radiation, and I finished off with infusions of Herceptin (at $13,000+ per session) every 3 weeks until this past January. Oh and throw in quarterly echocardiograms, since Herceptin wants to wreck the heart. It sucked, but I did ok. No matter how nauseous I never barfed. Never needed blood transfusion for low blood count. My hair even started to come back when I was on the less toxic chemo, and the chemo obliterated the tumor—there was nothing discernible to remove in surgery, so they just took surrounding tissue and a few lymph nodes, and that was clear. I seem to do well with poison. Not sure what to do with that, but whatever.

So I reflect today on the suckage—and the good stuff, like my cancer buddies—of the past 2 years. And all cancer patients (or anyone facing mortality) are “obligated” to have “learned something” and share wisdom. I’m not really fond of that crap, but I will say this: I did learn to cut out anything in my life that made me miserable, and learned how easy it is to do that. I re-learned to demand what I want, to the point of being a malcontent (not too insufferable a malcontent I hope). I had lost my way in life before I got sick, but I am back on track…and now I “just gotta keep on livin’, man. L-I-V-I-N.” (Matthew  McConaughey as Wooderson in Dazed and Confused)