This Can Not Be Happening to Me

Message received:
“Hey there. So, Jane has pretty much shut down. She’s not in a good place mentally. I’m not sure how to proceed with this, I want to help but if she doesn’t want to help herself there’s not much I can do.”

Mesage sent:
“Hey, I was sort-of nominated by the secret GBM society (no the other secret GBM society)(no, the other other secret GBM group)(you think I’m joking, but there are an uncountable number of brain cancer support groups that are now all marked as “secret” in the wake of various social media purges) to check on you. How are you doing?”

Message received:
“This is Jane’s mother, Jane passed away last night.”

Goddamn. Another one bites the dust. Normally, I wouldn’t be so flippant about a human being dying, but this is the third one this year. Fifth or sixth in the last 12 months.

This can not be happening to me.

A few universal commonalities emerge amongst cancer survivors. Ready?

  1. Even if we were aware something was wrong with us, our entry into this world is almost always announced by the phrase, “ We noticed something abnormal in your labs/scans; we need to do further tests to be certain, but we need to admit you to the hospital right now.”
  2. Even though our individual stories diverge dramatically after diagnosis, our lives are either completely or somewhat The Stuff of Nightmares. I may be verbally gifted, but even I can’t begin to adequately describe how hard and frightening life post-diagnosis is. I’ve heard this hyper-surreal, alternate dimension existence best summarised by the common complaint, “This can not be happening to me.”
  3. We would all — every one of us — give anything to go back to our lives just an hour before diagnosis. Even if we couldn’t change anything, even if we had to see it all unfold again exactly the same way; we desperately wish we could savor those last few minutes of near-health, before we got that scarlet C.

When I first started treatment — and successfully completed that treatment — I was amazed at how simple, easy, and effective it seemed, especially because — based on every single metric available to me — I am a cowardly moron. As it turns out, I have one incredible super power — the only one that matters, when you’re in these situations — I am amazingly lucky in times of extreme crisis.

Once Fate started whittling away at people I sort-of knew (the Internet is a mixed blessing), it really started hitting me. You can do a mental simulation of this by going through all your social media contacts and randomly deleting a few every month. And then never contacting them again.

When you get diagnosed, you immediately learn about the Kuhbler-Ross Stages of Grief — you also immediately learn it’s utterly rubbish (I’m sure I’ll be inundated with correspondence explaining to me how wrong I am, and how the Stages of Grief have been quietly and constantly updated and filled with exclusions, exceptions, and loopholes, and they’re really more what you’d call guidelines). Right now, I am in the Way Beyond Livid stage. Cancer was first described by Hippocrates thousands of years ago. Imagine a class of diseases that has been around unchecked since before the Roman Empire, and survivors are still stigmatized and forced to skulk around in the shadows of society, and it is still killing people by the score, and you can imagine why all survivors might be somewhat irked and mistrustful of modern medicine. I’ve made the comparison before, but HIV went from “genocidal catastrophe” to “uncurable, but extremely treatable” in the span of 30 years. I suspect, although I have no direct proof, this is due to wealthy old men realizing that HIV is spread sexually, and they could get it (especially if their predilection for Latin pool boys continued unabated)(but that’s another story for another time). If cancer was communicable, we’d have completely cured it last week.

Able-bodied people love to use warfare and battle metaphors. I suspect that’s because they think it’s empowering, but, really, it’s a metaphor they can understand. The only adequate warfare comparison I can think of is that opening scene in Saving Private Ryan, when all the soldiers in the frame are sublimated into a fine red mist before anyone can realize what happens. And able-bodied people like warfare analogies because our culture is obsessed with violence and the elevation of violence, and it’s a certain elan and mystique to a very boring, scary process; the fetishization of which, ironically, keeps survivors at arms’ length (albeit unintentionally). For everyone wondering what it is like to survive chemo and radiation (this is something the newly-diagnosed always ask), I’ll describe the process, in broad strokes, as a way to de-romanticize it.

You get surgery (if possible) to remove as much as the tumor as possible (if it’s a solid tumor; I don’t know what my leukemia friends do in lieu of this step; presumably, it’s a rough equivalent to stabbing themselves). You then get radiation for a prescribed period, and usually do at-home chemo. This is unpleasant, and usually results in hair-loss.

THEN, if those things made a difference (and, sadly, in many cases, it doesn’t even slow the cancer down)(as a delightful bonus, if you survive radiation treatment, the massive amounts of radiation you’re exposed to almost certainly guarantees some sort of eventual recurrence), you get to go on to chemotherapy — in my case, I got into an experimental chemo trial (see that bit about me being freakishly lucky when it really counts). If you want to experience that at home, you can take low doses of strychnine (NOTE: Please do not do this). To be excessively reductive of the whole process, you get stabbed, nuked, and poisoned. On a regular basis. Both physically and mentally, you feel like hell, because you’re being stabbed, nuked, and poisoned. Admittedly, if you’re not averse to taking drugs (and my philosophy for this whole thing was, “We left DARE a long time ago when it was decided that nuking and poisoning me was a healthy option. Juice me up, Igor.”)(I’ve learned that not everyone has this sort of competitive streak and says, “If the way forward is dangerous, experimental drugs, then I might as well get my moneys’-worth AND DO ALL THE DRUGS.”)(I’ve also quit filling out the “Current medications” section on any medical form and just started writing, “I’ll give you the full, 10-minute briefing in person”), you can make it through this process just feeling awful. That’s it. That’s the cancer-survival process; subject yourself to an onslaught of cellular violence and pray every second you’re awake. Pray it works. Pray for the strength to continue treatment. Pray your insurance doesn’t pull the plug. Pray you can convince your medical team you’re tough enough to withstand another cycle of treatment. That’s pretty much all cancer treatment is; pain and fear; alternate, rinse, and repeat as-needed, until you, the cancer, or your physicians give up. Pray it’s that second option.

This can not be happening to me.

What do you do when the prayers aren’t enough, as they aren’t in 95% of GBM cases?
Well, that’s where my horrible new-found calling as volunteer eulogy-writer for people I didn’t know personally comes in.
This can not be happening to me.
I — or my equivalent in other survivor communities — will figure out some way to light the beacons and let everyone else know the world is a little larger and darker today. And we all quietly, and alone, grieve another miserable loss.

To the latest asshole GOP congressman who subtly implied that illness is a choice, or some moral failing; I — and every other sick person who has been victimized by the Republicans’ long-standing policy of defunding biomedical research — would like to know, what did we do to deserve this? What will you say to your grandchildren, when they develop non-Hodgekin’s lymphoma because you gutted the EPA’s ability to monitor and regulate pesticides?
This can not be happening to me.

You can understand it when survivors (my preferred term, because it invokes John Carpenter’s works, which are far more accurate than John Wayne films)(John Wayne, BTW, died of stomach cancer and left one of the most cutting-edge cancer treatment centers on the west coast with enough money to keep it going long after his departure from this vale of tears) are disheartened, frightened or angry, as a first-line emotional response. Collectively, there are decades — possibly centuries-worth of stolen time. And I get to try and chronicle all of that with a severely reduced life expectancy. Goddamn, life is good.

Fortunately, the good folks at Our Brain Bank are lending a hand; if not in playing the detailed biographer/curator of those lost, then at least trying to keep some sort of basic, black-box-recorder type of information for future researchers. For future survivors.

This can not be happening to me.

In my self-appointed role as psychopomp for the newly-diagnosed, online; one of my chief functions is to smooth out those initially-ruffled feathers of disbelief and anger at the unfairness, and assure them that, even though this is a horrible, unfair situation that’s likely to end in blood and tears, and, even though nothing at all is guaranteed, you will seal your fate if you just stick your head in the sand and hope for the best, or refuse to acknowledge how precarious your new situation is.

In the 72-ish hours it took me to conceive of, and write this column, I found out two more people in my circle on the Cancer Web died in the last few weeks.

This can not be happening to me.

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