Nothing important enough to take up your time except this.
Poet Mary Oliver died this week on January 17th. She was important enough in my life to acknowledge her passing here. The comfort and introspection I derived from her writing while I was going through cancer treatment was lifesaving.
I don’t read a lot of poetry (and honestly don’t understand most of it), but I did Mary Oliver because she spoke to my soul, if that makes sense, about living a life paying attention and being astonished every day. She spoke of grief and I understood. Her writing reflected my values about nature and animals and said what I am wordless to say when watching a hawk sail overhead or sitting in silence under the moon like she did with Percy.
Unless you have or have had cancer, you won’t appreciate the significance of the title of this post.
Cancer anniversaries, regrettably nicknamed “cancerversaries” (see “anywho,” “guestimate”), are measured not from diagnosis, but from end of treatment. I don’t know about all protocols, but mine consisted of six weeks of radiation (5 days per week, about 20 minutes per session) interspersed with five rounds of chemotherapy.
The first three chemo sessions were low-dose support to the radiation, the last two were full-blown, as in the kind where the nurse stands in the doorway and watches you for a couple of minutes after the IV starts to make sure you don’t spontaneously combust. (Maybe that’s why she/he stands in the doorway and not right next to you in the bed or chair.)
On Friday September 25, 2015 I had my last chemo session. My localized, non-met tumor shrunk to nothing, I survived a clinical trial, the chemo and its concomitant hell, 10 days in the hospital for pneumonia, unrelenting fatigue and the infamous “chemobrain.” Three years later my status continues to be NED (no evidence of disease).
What’s important about this anniversary is that I’m more than halfway to the 5-year survival milestone. Each year I stay NED there’s a greater chance the cancer won’t come back. My oncologist says now there’s roughly a 20% chance of that. Of course, that could change in the time it takes to divide a cell, and I never forget that. No one with cancer ever forgets that. But for now I appreciate how incredibly lucky I am to have had these three years. And, that’s all it is – pure luck. And, maybe the good sense and geographic fortune to seek treatment at M.D. Anderson.
Three years in I never expected I would have. Three years to watch my grandchildren grow taller and stronger and be amazed at things they didn’t know the day before. Three years of imagination and Watch me! swimming and holding hands on the way to the park. Three years of birthdays and books and bedtime nuzzles. Three years of the people I love. Three years of ice cream and summers and grilled cheese sandwiches. Three years of school days and fall carnivals and Halloween costumes. Three years of Christmas anticipation and magic. Three years of moons and rainstorms and spaghetti with Rao’s marinara. Three years of dog smiles and soft cat paws and animals rescued and loved. Three years of cupcakes and birds and winter wind in the trees, the first smell of fall, summer night breezes and stars. Three years of life in this lousy, trump-infected world.
When you have a lethal form of cancer, your mortality eclipses your view of the future. And that’s something that no one who doesn’t have cancer can understand. It’s the first realm of separation.
“The future, instead of the ladder toward the goals of life, flattens out into a perpetual present.”
When you’re older, the ladder of goals is pretty much worn down to a slightly elevated ramp, but even then your consciousness dwells where future is inherent. There’s always tomorrow. A cancer diagnosis dispels that notion. Your world shrinks and flattens out while the larger one goes on without you. You recede, but you learn to find your place, your serenity, your joy in small present moments and you hold onto those for dear life. (Some of mine are here.)
So, three damn years. Yeah. Here’s to those ahead of me, behind me and, especially, to those we remember.
The American Cancer Society emailed me concerned about my absence and asking for my help in completing a short survey about what cancer issues I want to support.
I replied that I’m a little concerned, too, ACS, because nowhere in the survey is lung cancer even mentioned on the list of issues. There’s breast cancer right up there at the top. Colorectal cancer. Skin cancer. But no lung cancer.
The #1 cancer killer is lung cancer. More people die from lung cancer than the next three deadliest cancers combined: colorectal, pancreatic and breast. 1
Not. Even. Mentioned. The message seems to be “Lung cancer? We won’t even mention it because everybody knows only smokers get lung cancer.”
Yeah, tell that to all the people who have lung cancer who’ve never smoked.
You don’t have to smoke to get lung cancer. Geez, you’d think somebody there would know that by now.
Geez. Two months since my last post? I know, hard to believe, and me such a prolific poster.
No health-related reason for my absence other than, apparently, my mind has descended to the point where I am no longer able to multi-task, or even find the words to complete a coherent sentence. Hey! Who does that remind you of?
Other reasons could be . . .
— Ennui, perhaps? In medical record notes they sometimes call this “anhedonia,” though the two aren’t really the same. Smartasses. Always gotta have some word they think nobody else knows. Well, I took Latin, bub. I know what anhedonia means.
— Summer and grandkids make for stuff to do besides blogging, or even reading other blogs. You don’t dare try to sneak a little blog reading time on your computer. When you sit down they descend on you like locusts wanting to play some game.
— Whatever I might have thought to blog about couldn’t have been too important, or somebody else blogged about it better and I didn’t see a need to repeat it.
— Kidding aside, it’s been a time of struggle and sadness for a few family and friends. My heart just hasn’t been into blogging lately.
So, in case you were wondering, no health scares. Still NED. Just the minor lifelong litany of ills chemo and radiation bestow on various body parts that can result in a periodic good day-bad day thing.
In September, I’ll be two years out from treatment. That’s when my chances for survival are supposed to increase “markedly!” “dramatically!” “exponentially!” Though I’m not sure about that last one, at least in a true mathematical sense.
Then again, I heard an oncologist say the other day that 28 months is the window for recurrence, so who knows. I’m just glad for every extra day I get so that I can claw my way out of . . .
The Department of Sh*t I Don’t Understand . . .
Like everyone else I suppose, I’m just trying to survive whatever sick game your president* is playing with North Korea, though my gut feeling is it’s just his way of distracting us from Mueller’s investigation. Also, enduring the stench of raw sewage he calls his Administration.
If I had to bet on what would kill me first, today I’d say it won’t be my cancer.
It is beyond my comprehension that this overbooked ship of fools is still docked. Rather than evoke the 25th Amendment, Republicans in Congress are willing to risk the lives of millions of people — Republican people, I might add — to keep this psycho teed up.
For what end?
And back to first world . . .
Our AC went out at 5am.
High today here in Hell: 100 degrees.
Pulled out the floor fans, closed the shutters and drapes and blinds, cranked up the ceiling fans to High, turned off any device that emits even a joule of unnecessary heat and now trying to convince my dogs to breathe through their noses and not their mouths. Do you realize how much heat two big, hairy dogs and one medium-sized dog panting produces? Why aren’t they following my instructions?
I forbid all doors in my house to the outside to be opened and even a microgram of diminishing cool air to escape. “In or out, we’re not air-conditioning the neighborhood!”
Yes, I suppose I could leave and go to an air-conditioned movie or bookstore or the library, but then my animals would be left to suffer while I’m enjoying myself in icy cold comfort. What kind of person would do that? Hey! I bet I know someone who would.
So, I’ll stay here with them l until the AC guy comes this afternoon; hence, the term shut-in.
I was working on a post about the persistent, underlying, aggravating, self-absorbing fear that takes over your life when you have cancer, but I’ll save it for another day.
I have quarterly CT/PET scans coming up in a couple of weeks, and I’m in the midst of fending off a little bout of “scanxiety.” It gets easier as time goes on, but it’s still very tiring and very annoying and there’s just so much you can stand of thinking about yourself, you know?
So… let’s talk about something else.
I know. How about cats!
My sweet neighbor sent me an email with the subject “To a great cat-saver.” (Hmm, wonder if she meant “cat-saver” as in cat rescuer or if she meant “cat-saver” as in hoarder? Could be both, I guess.)
Anyway, it’s cute and it made me smile in between the aches and pains I just know are signs of explosive metastases.
My great aunt was a writer and a cat lover (also a Christian Scientist married to a doctor, but that’s another story). She often wrote poems like this one, so it made me smile to think of her, too.
Oh, what unhappy twist of fate Has brought you, homeless to my gate? The gate where once another stood To beg for shelter, warmth and food.
For from that day I ceased to be The master of my destiny. While he, with purr and velvet paw Became within my house, The Law.
He scratched the furniture and shed And claimed the middle of my bed. He ruled in arrogance and pride And broke my heart the day he died.
So if you really think, oh cat, I’d willingly relive all that Because you come, forlorn and thin Well . . . don’t just stand there . . . come on in!
Yesterday when I was goofing around with changing the theme on this blog, I took a break from my silliness and visited a few of the blogs I frequent.
While reading, I found out another lung cancer blogger died.
You get introduced to them through a shared condition. You get to know them and their families through their stories. You rejoice in their victories and commiserate in their setbacks, feel their pain and admire their fortitude, even if quietly to yourself and from afar. They become part of your consciousness.
Before we get into the weeds, it occurs to me that I don’t usually post updates on my health status like most other cancer bloggers do.
It feels a little like boasting to announce “Look at me! I’m NED!” (See Introvert below.) As if something I did is the reason for my good fortune. Especially when there are people who aren’t doing so well. When I read so-and-so’s blog about how superb her care is (best oncologist in the country) and what a fighter she is and how her oncologist is simply amazed at her progress (never seen anything like it), I always think about the person who might be reading who isn’t doing so well and who doesn’t have access to superb care, but who is desperately looking for answers or comfort. I don’t know. Just me, I guess.
I read a lot of cancer blogs. Once I decide I like the blog and will keep reading — trust me, there have been some that don’t make it past the first sentence — I always look for a timeline of the author’s cancer. And, naturally, I compare it to my experience. I don’t know if other people with cancer do this. Probably. We’re all looking for answers. For comfort.
Anyway, I’ve opened my big mouth so I guess I have to report that my last scans in March, 18 months out from treatment, showed continued NED (no evidence of disease). According to my oncologist, the median survival for my kind of cancer with treatment is 15 months. So, I’m lucky. I’m still here. And I’m doing fine. This moment, this hour, this day.
Now, let’s carry on with some of my curmudgeonly insight…
One of the features of being an introvert is that you’re not inclined to share every little thing that happens in your life — or even every big thing that happens in your life.
As a result, relatively few people who know me outside of this blog or who know me but don’t know about the blog are aware I have cancer. The few times I told people was when I was bald to answer questioning looks at my head, or on a need-to-know basis.
By so few people knowing I have lung cancer, I’ve been able to avoid the two utterances That Might Make Me Hit Somebody One of These Days:
1. “Did you smoke?” 2. various forms of the Positive Attitude TM admonition, which, IMO, is quickly gaining steam as the most annoying of the two utterances and may dictate greater injury.
I’ve never had anyone ask me the first to my face — but you know they’re thinking it — which I can attribute to knowing people with common sense and good manners. Or it could be that I’m just not around that many people and it’s the law of averages.
The second one I have though. It came from an acquaintance scolding, “Well, I can see someone needs an attitude adjustment!” after I mentioned that the prognosis for someone with lung cancer was grim. If she hadn’t been on the other end of a phone line, I might have punched her.
To be realistic about your cancer is not the antithesis of being positive. You can be positive and realistic at the same time.
See, here’s the thing. Cancer makes people afraid. Afraid of getting it, afraid of the grief, afraid of their own mortality. So they throw up that screen to warn you that they’re afraid by deflecting their fear back onto you either by blaming (“Did you smoke?”) or by meaningless counsel (You’ll beat this! Just be positive!).