Category: Medical

Author Amy Ferris frequently posts personal ruminations in her Facebook account which touch my heart, and encourage me.

But Monday morning I woke up to one that felt exceptionally personal for me. I started to type a comment, but soon realized my post was growing far too long for a comment thread.

So, I switched gears, planning to repost her anecdote on my Facebook page, with a longish introduction.

Before too long though, as the words kept tumbling out, that ceased to be an option as well.

And thus, here I am. Dusting off this long underused blog site so I can unlimber all I have to say.

With Amy’s permission, let me begin by sharing her original post here. I’ll move on to my response down on the other side.

A lovely FB memory:

It started with a favor: could I drive him to the oncologist, he has a check-up, it’ll only be a half-hour at most, he asked.

Sure, I said, sure.

He is someone I have known for 26 years; a friend who I see at parties and dinner’s at his house or smaller dinner’s and smaller parties at other houses, and well, you can know someone 26 years and never have time alone with them.

We sat in my car for 45 minutes, on the way to the cancer center; me in the driver’s seat, he in the passenger seat and we caught up and got to know each other better.

So much I didn’t know.
So much I now know.
So much more I hope to know.

The waiting room was full of people. Old & young.
Women & men & children.
Folks who were just beginning treatment, folks who were in the midst of treatment, folks who had recurrences – young & old and white & black & brown and gay & straight and the nurse came out and asked for Amy and I raised my hand, and she told me that my friend needed an infusion, and would I mind waiting, because this kinda thing can take an hour or two or… of course, I said, of course I’ll wait for him, yes, tell him that, yes, sure. I’ll be right here when he comes out.

And I caught up on magazines that I no longer buy. People and Us and a slew of magazines I had no idea existed and the thing I noticed, that rocked me to my core, when I looked up from reading about famous people who I knew nothing about and now know so much about, the thing I noticed was how kind everyone was. Kind and generous and maybe it was a cupful, and maybe it was just a spoonful and maybe it was a teeny bit but kindness has hope in it – kindness is hope – and… here, sit here, she said as she stood up from her chair to offer it to a man with a walker who was looking for a place to sit, and the smile and the kiss that was returned when a man brought his wife or his girlfriend – someone he was sleeping with – a cup of water and the little girl whose hair was growing back and the older boy who gave her a thumbs up and the small frail woman who I know was younger than me but looked so much like my mother and… every fucking time I am sitting in a waiting room, which is so very often these days I feel like it is me who is waiting for a moment or two or three that brings humanity back to my life; restores it, offering up hope.

It is me who is waiting.

It happened at the coffee machine.

For the life of me I couldn’t get the machine to make cappuccino, and unlike the waiting room at Subaru or iKen’s surgeon’s office or other doctor’s offices, this machine was odd and strange and unfamiliar and twice I tried, twice, and… no foam, none, and it isn’t cappuccino without foam, it’s just plain fucking coffee and I huffed and I puffed and I was about to try one more time when … can I help, she asked. Can I help you? Maybe she was 15, maybe 16 years old. Maybe. Tall and lanky and pale as a ghost with braces on her teeth and yes, yes, you can help me, I said. Thank you so much. It’s my pleasure. And she made me a cappuccino and told me that the cup was hot, really really hot be careful, she said, and I thought my God… my God… here in this room filled with folks who have no idea how long they have, no idea how much time… this girl, this girl with braces and cancer gave me some of her time and I had no idea, none, when I honked the horn this morning to pick up my friend of 26 years who I now know a bit better than I did yesterday because in a car you can choose to be emotionally intimate in a way you can’t be with music blaring and people talking over each other and I had no idea, none what so ever, when I said yes that I was saying yes to something more than a favor, I said yes to hope.

We mustn’t lose hope.

Thank you, Amy.
Thank you for seeing us.

Not many folks who don’t belong to the Kancer Kidz Klub really can.

Oh, a lot of ’em care. And they try, they really do.
But they just don’t, maybe can’t, “get” us.

Cos we don’t live in the same world as you any more.
Oh, we’re not far away. Just over here.

Our world looks a lot like yours.
We do, or try to do, a lot of the same stuff you do—that we used to do.
But it’s different here. And if you don’t live here, you don’t know.

No, we aren’t all waiting to die.

Some of us are. And that’s okay. I mean, all humans do die, sooner or later. It’s just that some of us here have that official notice that our stop is coming up soon and we should gather our stuff.

But some of us are holding hope, and fighting like motherfuckers to get back over there to the old home world where you all are.

Oh, there’s a lot of stuff we have in common. Much of it wouldn’t sound unfamiliar to other folks back there who are dealing with aging, other debilitating diseases (be they exotic or commonplace), et cetera. Many folks back in the Home World also get the chance to experience extreme fatigue, random severe pain, our senses of taste, smell, sometimes others not working right.

There’s another thing all of us in the Klub have in common (and this kinda ties in with your experience when you gave you friend a ride to his appointment).

Waiting. We do a shit ton of waiting. Waiting to see the oncologist who is running behind because an earlier patient had a crisis. Waiting to see how the new bloodwork or scans came out. Waiting for the biopsy results. Waiting for the fucking infusion to be done. Waiting to see if they think they “got it all” after a surgery. Just a lot of waiting. And that can be extra frustrating if you’ve already been advised you’re on a short clock.

Oh, frustration. Shall we talk about feelings?

Yeah, frustration is one that’s always on offer.
Plenty of chances to feel frustrated; impatient.
Of course, those are terrific “opportunities for learning.” Because it is quickly apparent that setting up camp in that negativity isn’t going to accomplish fuck all. And it’s a toxic place to live. Not a good choice.
There’s already so much inescapable toxicity (one of the odd quirks of cancer treatment is that one of the basic principles seems to involve a delicate dance of slowly poisoning the patience within an inch of their lives in the hopes the cancer cells die off before the host body) that voluntarily choosing more pretty much doesn’t pencil out when you look at the cost – benefit balance.

What are some other pretty common feelings? Well, there’s hope (and I know that’s one that you’re fond of, Amy). A cancer diagnosis is certainly not always and inescapably terminal any more.

(Though it certainly CAN be – if there is any sort of “early detection” procedure you’ve been putting off because it seems yucky, or it might hurt, or there’s a copay. Stop. Just stop. Go make the fucking appointment. Get it done. We don’t WANT you over here in Kancer World if that can possibly be avoided.)

But I was talking about hope. There are certainly a lot of us in the Kancer Kids Klub who have been given to understand there’s every reason to expect we’ll come out the other side after a somewhat bumpy detour over here on the bad roads of Kancer World. And the dominant feelings for those Klub Members are pretty much hope and determination. Those folks step up, pull on their Fuck Cancer tee shirts and (for many) knit beanies over their newly hairless noggins and quite literally engage in daily battle. So they are feisty, determined and driven by hope. And the rest of us hold hope with them. They carry the torch for us all.

Confusion. There’s often a feeling of confusion; overwhelm. Especially for the newly diagnosed. Such a mass of complex, often technical information to take on board (along with well-meaning but useless input from friends who just feel compelled to tell you about their Aunt Ida who confounded her doctors after she went off to a private clinic in Minnesota and spent six months on a specially tailored diet of blender drinks made with 17 herbs known only to shamans in the ancient Celtic tradition and a secret blend of raw vegetables). So much to take on board at exactly that moment when your mind is still reeling from the emotional shock of hearing the “C-Word” and struggling to take in ANYTHING. Meanwhile, we’ve got to get up to speed on all this, because it’s going to be necessary for us to be the lead dogs in taking responsibility for our own medical advocacy.

I could continue, but I’m wearing myself out just typing all this. There is one other emotion that touches each of us. Some may admit it; articulate it more readily that others. But it touches all of us from time to time.

Fear. Any Kancer Kid who insists they are not visited at least by moments of fear and doubt is lying. Either to you or to themselves. Of course. It’s fucking scary over here in Kancer World. So many unknowns. Existentially unknown. And we in the Klub are well acquainted with our personal mortality. It’s up in our face 24/7.

So yes, Amy. What you noticed (careful noticer of things that you are) is dead on. We are all unique persons, and express ourselves as such. But if I was to generalize, I would offer this.

First, regardless of prognosis, being handed a cancer diagnosis does have a clarifying effect on one’s priorities. Seems that a lot of humans spend much of our lives pouring energy into things which, when you get right down to the bone, don’t really matter much. So, many of us find ourselves shifting our focus and reconsidering, given that our time in life is limited, just what we believe is important.

Also, I believe these common experiences have a tendency to tenderize the those of us in the Kancer Klub. This may manifest in different ways, but a lot of it seems to show up around how we take care of each other. Not so much the sweeping, magnificent gestures. But those little things. Being aware of who may need the seat worse (and, when that’s you, accepting the proffered courtesy and support with grace and gratitude—with respect for where it’s coming from); giving a stranger a hand with a balky vending machine; inviting that person juggling a dozen eggs, a half-gallon of milk, and a fussy child to go on ahead of you in the supermarket checkout line.

Sure, there are lots of folks who don’t live in Kancer World who go through their lives this way, and bless ‘em. The world needs more tender hearts. Badly.

But, I dunno. Members of the Klub, regardless of their politics, religious beliefs (or absence of), economic status, or cultural background just seem to have a baseline empathy quotient that’s a wee bit higher.

I don’t mean to suggest that “all us Kancer Kids are SPECIAL.” That’s a little self-centered, even for this old boomer.

I guess what I’m saying is that while we appear to be living right next to you, and be dealing with the same joys and challenges, there’s this thing that rather sets us aside just a degree or two. Most “regular folk” don’t even notice it and, if they do, even fewer know what to do with it; how to deal with us.

And you know? That’s really okay too.

Not just because, well, it has to be. But because, even though I live over here in Kancer World now (and, in my case, will apparently be living here until the day that Dark Bastard comes for me), like all of us, I originated on that same Home World as all you guys.

And in my younger years, I wasn’t really comfortable moving among the dead and dying either. With time, I like to think I got better, able to be there with a bit more ease and grace. But I do remember how hard it was; how clumsy I was at it.

And thus it’s such a treat—so validating—to feel like someone from the Home World; someone like the talented Amy Ferris (who has had, and has, her own mountains to climb and storms to weather) sees us. I mean, really SEES us.

So thank you for that.

 

A couple of notes before I go.

• If you’re not familiar with her, Amy Ferris is not only an exceptional (and successful) screenwriter and novelist. She also devotes a lot of time and energy these days to encouraging others, especially women, to find their voices and share their stories.
  You can find her Amazon page for more.
  She’s also on social media. There is a Twitter account,  but she’s most active on Facebook. She uses that account almost like a mini-blog. It’s where I found the post that generated this response from me.
• There is a small, private group on Facebook expressly to offer folks who have a cancer diagnosis a spot where we can talk strictly among ourselves about whatever we need, be it a request for experience and support, a need to vent with others also living in our strange land without worrying about rattling the civilians. No friends, loved ones, or caregivers. Just a few of us. It’s called The Kancer Kidz Koffee Klub and if you qualify by virtue of currently doing the Kancer Dance or having been a patient previously who has graduated you’re welcome to stop by and check us out.
• Finally, it occurs to me that some of my remarks may have suggested a lack of respect for those we depend on for support. If so I apologize, for that is not my message. Almost without exception, my experience has been that all these folks are damned living saints. And a special word for the health care professionals who elect to work in oncology. There are a hell of a lot of jobs in medicine and care which demand a special balance of commitment, knowledge, and professionalism. But I am surprised and my heart is touched over and over by those special among special people who deal with us Kancer Kids.

So yesterday I made the longish drive up to San Jose for the “routine check-in appointment” with my oncologist.

We covered where I’m at, and how things have (and haven’t) progressed since they upgraded me last summer and declared me officially “advanced” now—which was, you may recall, the impetus for launching this blog in the first place.

At the time I graduated to Advanced Prostate Cancer Patient, she’d told me that, given my situation, I should expect to metastasize “within a year,” and that, on average, survivability after that point is generally a year or two. So, I brought that up with her yesterday. Because here I sit, eight months later, jaunty jolly, waiting for the damned shoe to drop and my quality of life to start getting shitty fairly quickly.

Here’s the thing: At the time they escalated my diagnosis, the “doubling rate” on my PSA count was rolling like a runaway gravel truck with blown airbrakes on a stretch of road coming off the mountain. Fast and getting faster.

So, concurrent with my newly acquired Big Boy status, they deployed some new (new to my personal ecology, not new to the field) pharmaceutical weapons which are sometimes helpful.

I’d been receiving injections of a drug called Lupron ever since my number started to creep up again a few years back. They had given it to me for several years after my radiation treatments back when I was first diagnosed in the early ’90s, but then discontinued it when things stabilized. They sent me on my way with instructions to get my PSA checked more often than the average guy, which I did.

If you’re not familiar, Lupron suppresses testosterone production. See, testosterone is like Happy Meals for prostate cancer cells, and the idea is that, by removing that from the body, you starve out the little bastards.

It’s actually pretty effective, for a while. But the thing about cancer is that it’s persistent, and creative. Eventually, when it gets tired of being malnourished, it mutates itself so it can comfortably find sustenance elsewhere, and starts replicating again like cellular level bunny rabbits.

So anyway (sorry this is so “long way ’round,” I’m tired and I guess I’m feeling like I need to spell this out at this point), I’d been back on Lupron for two or three years when they decided I’m officially Advanced (and therefore ultimately terminal) now. And, while continuing the periodic injections, they added a daily oral medication, Casadex, to the mix.

As I understand it, Casadex essentially inhibits the ability of my cancer cells to bind with ANY of the hormones in my body, including any residual testosterone, and the three or four other things I never knew we have that exist on the biological spectrum somewhere between testosterone and estrogen (which, by the way, we all have within us as well).

Often, though not always, this effectively slows down the cancer’s progression until it once more adjusts to the changing ecosystem in my body and gets cooking again.

The good news is that it seems to have worked like a champ in my case. My PSA numbers have been knocked way down, and stabilized at a level that, in a guy who didn’t have the cancer, would be just dandy. Unfortunately I do, so the effect is temporary. In time, we’ll see my numbers start to get away again; but that is then. This is now.

Anyway (finally!), what this all boils down to in the near term is this: The oncologist’s officially operable wisdom at the moment is that I can expect to metastasize one to two years from the time of my advanced restaging (last summer).

So, I’m still on the long offramp, but it’s appearing at the moment that the ramp may be a bit longer, and I may be rolling a bit slower, than we were previously led to believe. Which I embrace, without reservation, as delightful news.

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There’s an old joke about the difference between an optimist and a pessimist that goes something like this.

The two old friends find themselves in The Big City for the first time, encountering that modern wonder known as the “skyscraper.” They’re standing on the sidewalk in front of a building famous for its observation deck, debating whether they should go up and check out the views.
The pessimist flat refuses to get on the elevator and go up to check it out. “I just KNOW something will go wrong and one of us will fall!” he declares.

“OK, fine,” responds the optimist. “I’m going up by myself,” he vows and steps into the elevator.
Once up on the eighty ninth floor, he heads outdoors to the observation deck and is immediately vindicated. It’s a beautiful, sunny day, and he’s standing at the highest point in the city taking it all in.
It’s so spectacular, he leans out for a better look and, sure enough, loses his footing and tumbles off into free fall.
But remember I told you he’s the eternal optimist. As he’s falling eighty nine stories to certain death, he calls out to folks looking out their office windows as he passes each story, “Doing great so far!”

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Some days—hell, a lot of days any more—I find myself identifying with that mythical optimist. Yes, I know how this ends. But in the meanwhile, I’m doing great so far.