Mostly, I think expletives betray a lack of vocabulary. Once in a while they are justified.
I know I’m not the only one who was glad to see the backside of 2016. Wishing your life away is not a good thing, but floundering on the dark side of the moon loses its appeal after a while.
But we’re now more than halfway through 2017, and the shit storm has had some staying power. Like the tornado in the Wizard of Oz, it has uprooted homes from their foundations, blown bicycles into the sky, and dropped things down topsy-turvy where they don’t belong. Like the current occupant of the White House. (But I digress.)
Yanking me into “what the hell is going on here” retrospective/introspective/give-me-some-perspective mode: The news that our friend Fred Shane died last week.
Some back story:
Almost exactly one year to the day ago, Fred ran sound for a benefit concert at Dewey Hall, a lovely New England meeting house that was built in 1887 to memorialize Orville Dewey, who had worked “to increase good and kindly feelings and to promote intelligence and cheerfulness.” The benefit was for my partner David, who’d suffered a stroke. Not one of those pesky TIAs; David got the full Monty – a stroke that paralyzed his entire right side and stole a whole lot of language. He has recovered now, mostly, after intensive therapy and with the support of our community.
That was in the summer of 2016. The rest of the year had more in store. David dealt with a diabetes diagnosis (since reversed — yes, reversed; I’ll talk about that in another post). And an emergency appendectomy, the appendicitis presenting while he was in therapy to deal with the after effects of the stroke.
We may have been self-absorbed in our own little cocoon of crisis, but we weren’t the only ones hammered. Joe, our student and good friend got a cancer diagnosis which necessitated his move to another city for multiple surgeries, radiation, a bout of MRSA infection, skin grafts, and more radiation. My elderly mom was coping with an unending string of problems from legal blindness to infections to hating the food at the facility where she lives. Other friends and family had issues. And on and on.
New Year’s couldn’t come fast enough. Out with the old, and all that.
I slid into 2017 with resolutions. At that point, I’d lost about 55 pounds (more on THAT in another post). The health catastrophes surrounding me had encouraged me to put health maintenance back on track. Right after New Year’s, I showed up for a routine physical. With a confidence born of weight loss, I expected the usual: blood pressure, weight, lab work, a lecture about eating more healthy whole grains and doing more exercise. Hand over the co-pay, and I’d be on my way.
Yeah… on my way and out the door — to a series of specialists’ offices, mostly involving CAT scans, biopsies, and the word oncology.
First the good news: the gynecological cancers that were suspected turned out to be a collection of benign issues. True, I had to have a complete abdominal hysterectomy. And they removed a fibroid that weighed more than 5 pounds – ie, a growth as big as a viable baby! But hey, at least it wasn’t cancer.
The bad news: A barely perceptible swelling in my neck was thyroid cancer, metastatic to the lymph nodes.
In a blur of shock, I fixated on what everyone seemed so eager to tell me: that thyroid cancer is the “good cancer.” Most thyroid cancer patients, I learned later, hate that phrase. They feel it minimizes what they are going through. But in those first days, I took it as reassurance, and it made me feel more optimistic.
At about the same time that I was diagnosed with thyroid cancer, Joe was undergoing radiation in Boston, and Fred got his diagnosis, stage 4 colon cancer.
Compared to Joe’s sarcoma and Fred’s colon cancer, I have to say yes, I won the cancer lottery. To wit: Fred’s treatments were harsher, more life-disruptive, and ultimately, not successful. Joe’s were prolonged and painful with multiple complications. From where I sit, I think I did indeed pull the lucky straw.
But the “good cancer” is not without its own charms. In January, I had a total thyroidectomy and lateral neck dissection, leaving me with a smiley-shaped scar that matches the abdominal scar I got from my hysterectomy in March.
I also need to take thyroid replacement medication every day for the rest of my life. That sounds like a small thing. But for someone who has never been on any chronic medication, it’s been a hard hit, maybe because it seems a daily reminder of mortality, of how things can go so suddenly wrong.
And there is a vulnerability, a surprising sense of dependence on “the system.” Remember Y2K? The fears and questions: Would digital meltdown stop computers – and trains, planes, phones, the electric grid… hospital equipment? I remember a conversation I had with a friend: She asked if I was worried, and I said that I had a water filter for backpacking, and there was a stream near where I lived. I had a fireplace and wood and warm clothes and a pantry full of food. I could survive.
If we had the same conversation today, I’d have to factor in getting my pills. What if the lights went out at the pharmacy? Or at the factory where they make the medicine?
I know, I know…. It’s fanciful and far-fetched and overly-dramatic. I do not believe the world will melt down, current politics notwithstanding. But I’m amazed at the overshadowing presence of that tiny purple pill in my life.
In February, I had the radioactive iodine treatment.
Radioactive iodine treatment is simply a matter of taking a pill that works like a heat-seeking missile. The radioactive iodine can only be taken up by thyroid cells, which it then destroys, like a bad Airbnb guest in an unsupervised apartment.
The protocol surrounding the seemingly small act of swallowing this pill is scarily surreal.
To enable your thyroid cells to take up the iodine, you start with two shots, which cost thousands – yes, THOUSANDS of dollars. I don’t know precisely how many thousands of dollars because the insurance company that pays for it didn’t provide that information. (I am writing this in August 2017, when the despicable government this country has idiotically elected has been trying, so far unsuccessfully, to decimate affordable health care. But I digress.)
To actually take the pill, you go to the hospital. I was told to park in a special lot, and enter and (more importantly) exit the building through a seldom-used hallway in order to minimize encounters with other patients and staff. Anyone I merely passed in the hall would be contaminated by the radiation emanating from me once I took the pill.
Think about it: The “good cancer” was making me ingest a pill so toxic that merely passing someone in a hallway could be dangerous to them.
As soon as I arrived in the waiting room, the receptionist, and then the lab tech, and then the doctor, all demanded whether I’d parked in the appropriate place.
In short: Not a casual vibe.
The pill arrived in a protective, lined metal case imprinted with danger warnings. A lab tech stood on the far side of a protective screen, wearing protective lab clothes and protective gloves. He spilled the pill out onto a counter and used a tool to nudge it toward me. The doctors – a nuclear medicine doctor and a nuclear physicist – stood as far away as possible at the other end of the room, trying to look like they just happened to be casually perched there.
Down the hatch.
I did not feel different. I did not start glowing. Anticlimactically, off I went, through the back hall and the back door, back home, where I had to live in total isolation from anyone else for a few days.
For an introverted book addict like me, that was the easy part.
And the rest is all test and watch and wait and test… pretty much forever, if I understand it right.
March was the hysterectomy, complete with happy results.
Since then, life has ebbed back to a new kind of normal. My brain is full of stuff – strokes, statins, cancer stages, blood sugars, A1c ranges, cholesterol particles, carb counts – that it never knew about before, and I have a whole new vocabulary of words like salpingo-oophorectomy and atorvastatin. I feel healthy. I hope it is not an illusion. Things can change on a dime. I always knew that, but I know it differently now.
Ironically, we missed Fred’s farewell party – we were playing music in the Washington D.C. area with the group of friends who had played at David’s benefit the year before. The farewell party had been moved up a week, and we learned about it too late. And then he was gone.
I try to find meaning in it all, but the universe is sometimes heartlessly random. I grew up Catholic, and the only phrase that ever made sense to me is “the mystery of life.” The Old Testament God – fickle, temperamental, and occasionally not very nice – makes sense in a year like this. A manic-depressive god who could create a world full of butterflies and coral reefs and bird song at dawn — then throw down floods and toss a person into the belly of a whale or torment a believer with a thousand afflictions.
A mystery, indeed.
And yet, doctor’s appointments or no, tomorrow comes, then tomorrow after that, each one with its endless possibilities. Until it doesn’t, I suppose.
Cliches abound. One day at a time. Living life to the fullest. Live every day as if it were your last. Homilies that are at once on point and annoying.
I think most of us are just struggling through, mostly trying to do the best we can. My friend Joe and I compared notes, agreeing that we were both struck by how ordinary all of this seems. You live your life thinking that the word cancer is the worst thing that can happen. And then you hear that word and you cross that Rubicon, and you realize that life on the other side is still the life you had. Different in some ways – and more different for some than for others. But still life, filled with the good things it’s always had. And you still have to pay your taxes!
At the moment, there is music, and travel. There is the view from my back porch and the family and friends whose lives intersect with mine. There are the books I want to write, and the photographs I want to take, the trails I hike on near my home and the trails I want to hike far away, and the art I want to try to make, and the garden that needs weeding. There is the light of late summer, taking on that rich, deep-hued gold, and the sweet smell of mature grass and harvest time and the woods of summer camp. There is time to savor; there is no time to waste.
The funny thing about hiking above treeline is that the challenges and the views are always changing. So I have no idea what my perspective will be tomorrow. I might be on my knees, cowering among the krummholtz and the boulders, praying for relief from the lightning and shelter from the wind and rain. Or I may have a 100-mile view under cornflower skies. If I stick around long enough, most probably, I will experience both.
I am growing above treeline, whether I want to or not, growing on the days of endless, heart-expanding views, growing as I am tossed about by the shit storm. And I wonder what Fred’s view is now, from his vantage point in the great beyond.
Perhaps he would say “Don’t get cancer.” (Fred said that a lot) “But if you do get cancer, squeeze every bit of life and love out of it that you can.”
I will keep writing about what I learn. I have no idea what it will be. But isn’t that the point?