Got a card yesterday from the Black Forest, Das Schwarzwald. A get well card purchased at the Minneapolis Institute of Arts by my buddies in the Woolly Mammoths. They had gone together to see a show of Native American women artists, one of the more powerful exhibits in recent years my docent friends have told me.
Each man wrote a personal message on the card. I read them all, smiling, seeing this gray head, that gray beard. The old smiles. Hearing the laughter. Knowing the Black Forest, probably outside at a round metal table, traffic whizzing by on 26th Street. Frank ordered a sausage, if memory serves. Maybe some spatzle, weinerschnitzel, lentil soup. St. Pauli Girl drafts.
And, felt sad. Wistful. I love these guys and know them. Well. In the way only 30 + years of being together could allow. It was a sweet sadness, one that told me these relationships still live within me, not extinguished, not weakened by almost 5 years in Colorado.
Regrets? No. An affirmation of life, of the power of friendship, of its durability. The sadness is real, as is my gladness at driving up Brook Forest Drive to our home on top of Shadow Mountain.
Both Minnesota and Colorado have wildness and wilderness at their hearts. The Northwoods, the Boreal forest, the lakes, Lake Superior. Wolves, deer, lynx. Muskie and walleye. Mt. Evans, Rocky Mountain National Park, the San Juan Wilderness. Black bears, moose, elk, mountain lions, fox. The Black Canyon of the Gunnison.
Colorado has Congregation Beth Evergreen. A quirky synagogue with a collection of folks who call themselves mountain Jews. It’s where I’m seen and where I see others. Deep moments of human connection, like the Woollies. Glad for both.
Orion has returned. He’s visible just above the south-eastern horizon around 5 am. A friend since my time as a security guard for a cookware factory. On the midnight shift I worked alone and during the fall and winter months we became acquainted. He signals the season of inner work.
As the growing season yields its bounty, the plant world gets ready for the fallow season that will start on October 31st, Samain. The nights grow longer and cooler. On September 29th Michaelmas, the springtime of the soul. Perennials send food down to their corms, tubers, bulbs. Their leaves turn brown and die back to the ground. Annual flowers finish their summer long journey by spreading seed for the next year.
This is the Great Wheel and it repeats each year, spiraling out along earth’s orbit. Lived too, in lifetimes of birth, youth, maturity, and senescence. It is the way of the earth. For living things, the most ancientrail of all.
This is the lens through which I see my life, the one I use for comfort in difficult times, celebration, understanding.
Saw a movie yesterday, Midsommar. Its opening scene shows winter, spring, summer, and fall in a tableau. You may be aware of the naked dancing the Swedes (and others, too) enjoy at their midsommar bonfires. Well, this isn’t about that. It shows the dark side of a pagan worldview, how it can devolve into traditions every bit as dogmatic and frightening as any inquisitor. I loved this movie. Kate hated it.
Fans of Wicker Man will see Midsommar as an instant classic in the same vein. Kate said, “It made me glad I’m not Swedish.” Spoiler alert: the character named Christian does not fare well.
A not so good day yesterday. Not sure why, felt achy, tired. Might be expecting a full recovery from the radiation a bit too soon. Pushing myself to recalibrate, rejigger my/our life. Too soon, too. I need to lean into the Lupron, the radiation as cancer treatments, not just inconveniences.
There’s a paradox here. The radiation burned into my prostate fossa ten minutes a day for 35 days. Lupron heats me up, makes me foggy, gives me mood swings. Not fun. Although. If I focus on the trips to Lone Tree, the fatigue, the bowel upsets, the cancer itself disappears behind the Cyberknife. When I’m having a hot flush or suddenly feel despondent or angry or sad, the cancer disappears again, hidden by the physical and psychological effects of testosterone suppression.
But the cancer remains. Or, maybe does not. Could be gone now. Supposed to be. A terminal diagnosis unless the treatments work. Serious matter. How to handle the ultimate nature of this threat? I don’t want to deny it, but I am ok with slipping away from its presence, letting the dire nature of its aim recede into the background of life.
Kate’s 75th today. Three quarters of a century. We went to a movie last night, The Kitchen. Irish mob ladies take over Hell’s Kitchen. Not gonna be up for an Oscar. Entertaining though.
Going out together. Been a rare thing over the last 11 months. This was special and we may do it again today to see Midsommar. Whoa.
We’ll have our own party today. The grandkids and Jon will come up next weekend for a second party. Wish I’d been feeling less distracted by cancer and radiation. This is a big birthday. Not only has she turned seventy-five; she also lived to see it. In question at certain points last year.
6 days now with no glow. I’m a no glow zone. Gut seems to have settled down. Mornings are good, energy better. As Joseph said on the way home from Merton and Rebecca’s 50th anniversary party, “I can feel my powers returning.”
Hot flashes have begun to occur with more frequency. Disconcerting. Is it me, or is it the room temperature? Mine are not really flashes so much as hot flushes. A prickly heat sensation at the base of the neck, then my head gets warm, sometimes uncomfortably so. A couple of times I’ve had to wipe sweat off the back of my neck.
At MVP the other night I had to get up twice and go outside. The social hall at CBE has banks of 7 or 8 foot windows and it’s always warm to hot in the summer. Being in a warmer environment encourages the flushes. It was weird to leave an intense discussion because I was too hot, but I did it anyway.
We’ve gotten more food. And flowers. And chocolate. And cake. And pie. Thanks, if you’re one who contributed. Having the meals over the last month has made the days so much better. I pick the pan back up starting next week.
May not recalibrate our lives for a while. The Lupron.
Three aha moments. Responses to my Facebook post about ending radiation. A Bollywood epic about 21 Sikhs who held off a Pathan tribe force of 10,000. Kesari. 2015 Alexandria Class of 1965 50th reunion.
In 2015, a month and a half or so after my prostatectomy, I drove to Alexandria, Indiana for the 50th reunion of the class of 1965, my class. In Independence, Missouri I got out of the rental car, went back to get my luggage out of the trunk and promptly peed my pants, soaking a pair of jeans. Embarrassed and chagrined I got in the room holding my luggage in front of me, took those pants off and stuffed them in a wastebasket.
The first event of the reunion, at the Alexandria Historical Society, found me with that experience at front of mind. As a leader in academics and the class, you might not expect me to be nervous, feel vulnerable. I did though. It was partly the Independence (irony) moment, yes; but, it was also the knowledge that I’d traveled a much different road after high school than the vast majority of my classmates.
Many of them went to Vietnam. Dennis Sizelove died there. Richard Lawson, a close friend, died later of wounds from his war time. Mike Thomas and several others at the reunion were Vietnam vets. Only a few of us went onto college, maybe 10% out of our class of 180. I didn’t know anybody in our class with a graduate professional degree and a post-graduate school doctorate.
This was 2015, the year before an electoral Titanic took us all down with it. Somebody asked me to speak during our dinner at Norwood Bowl. It was the only venue in town large enough for our meal.
We’re here together again. After 50 years. But not just 50 years. Most of us were together for at least 12 years before that. Let’s call it 62 years. Yet we’re here. Why? Because we still care about each other, about our town, about the memories we made.
I know we’re divided in many ways: those that stayed around, those that left. Like me. those that supported the war in Vietnam and those that didn’t. Like me. Those that found George Bush a good President, those that prefer Obama. Like me. Those that like the Colts and those that like the Vikings. Like me. I’m sure there are, too, differences over sexuality, abortion, maybe even race.
But this is what’s important. In this room we share something more important than those divisions. We share a community. We are a community. And communities don’t require everyone to believe the same. In fact, they’d be pretty boring if we did. I care about each of you not because of what you believe, but because of who you are. Even if I don’t know you well, I still care because we share a life built together over time.
I was shaking when I started. I’d chosen to lay bare the vulnerability I felt. Hard. But as I spoke, maybe 3 minutes, the vulnerability went away to be replaced by gratitude that I still knew these people. Was still alive with them.
On facebook I’ve made two posts about cancer. First, letting folks know I had it again and that I would undergo radiation treatment and a second one saying I’d finished. On the list of folks who responded and commented were many who post America love or leave it type messages, pro-Trump, anti-snowflake. They were also folks who can’t wait for the revolution. With some of them I share a love of art. With others college during the late 60’s. With others Congregation Beth Evergreen.
Each one part of a venn diagram of various communities to which I belong or belonged. And, in those communities empathy and concern, love, transcend political and religious differences. Why? Because communities do not expect everyone to share the same beliefs.
Kesari. Amazon Prime Video has many Bollywood movies. I like them. I even like the inevitable contrived dance routines and singing.
Kesari is a retelling of the battle for Saragarhi, a real 1897 encounter between 21 Sikhs who held Ft. Saragarhi and an invading force of Muslim Pathans that numbered around 10,000. It has an Alamo feel; the Sikhs fight only to slow the invaders and all of them die.
The lead character, Havlidar (or, Sgt.) Ishar Singh, rallies the Sikh’s both against the Pathan tribesmen and the occupying British, “…who see us as slaves. We can choose to die as free men.” The story remains in Indian memory because it underscored the bravery of the Sikh soldiers and, by extension, all Sikhs.
Here’s the link for this post. At the very end of the movie all but Ishar Singh and one other are dead. The Pathans have demolished a wall of the fort and will soon invade. Ishar Singh, who has had visions of his wife throughout the movie, has one as he stands alone, sword ready for the coming assault.
“Should I run? Or, should I stay?” he asks her. She smiles, “Make our community proud.”
Here’s the paradox of community. There are inclusive communities, usually we had no choice in belonging to them, like our families, and communities defined by exclusion, like the Sikh’s, say, or LGBTQ, or Trump supporters, or progressive Democrats. These exclusive communities can inspire us, make us feel safe among our own “kind,” but they also reinforce political divisions and make our larger communities less safe.
Pole dancing. I have no magic formula. No way to be in an exclusive community without its pitfalls. Perhaps though if we took a lesson from exotic dancers and were willing to strip ourselves bare, to see ourselves as individuals and, most important, show ourselves as individuals, to each other. Perhaps. Just perhaps.
First week with no radiation treatments since June 17th. Still seems odd to me that I started radiation for this most male of diseases the day after Father’s Day. And, even odder, that I ended in the week of both Hiroshima and Nagasaki’s anniversaries. Peaceful or deadly, the use of technology and science matters. A lot.
And in other cancer treatment news. Why did the room get so hot last night? More than once? Not exactly hot flashes, more like hot surges. Still so new to me that I don’t tumble to them immediately. I just wonder why someone turned the heat up in the room. So far they’re in the evening for the most part. None at night and only a couple during the day. I’m taking Black Cohosh and if they get bad I’ll find an acupuncturist.
Yesterday we got a great beef stew, peach and strawberry cobbler, smoothies for breakfast, and salad from Judy Sherman. This is the last week of meals from CBE. Counting on Gilroy’s one week and you’re beginning to feel a lot better.
Still in the weekend. First day with no radiation is tomorrow. And tomorrow, and tomorrow. Not fully sunk in yet. Except for putting away the Miralax, the Beano, the Renew Life. Back to regular bowel life in a week or so. Yeah! Spent Friday night and Saturday eating forbidden foods like cucumbers, carrots, ice cream, fried falafel. Bring on the gas.
Kate got up yesterday, wasn’t feeling well. I can tell quickly. She went back to bed. Sometime around noon she realized she’d not taken her morning meds. Oh, she said. Turns out they’re really important. A better afternoon.
It’s been cooler here the last three days. Nice sleeping. Overcast this morning. What my Aunt Roberta would have called a dull, gray day. She often opened letters with that line. A variation, I think, on: it was a dark and stormy night. In this usually sunny state overcast is an oddity.
Sent out notes about the end of radiation. Receiving messages back. The support of such a wide group of folks has given me a safety net for those times when the weight bore down. Thanks to you all. You know who you are. Especially to Kate who has role modeled a phlegmatic response to medical issues. Thanks, sweetheart.
More convinced than ever that resilience is key to the third phase. By definition we’re going to hit tough, scary bumps in the road at our age. How we respond will determine how miserable they make us.
In my case I’m pretty sure it’s acceptance of death that has undergirded me. Got into accepting my own death thanks to the Yamantaka Mandala that hangs in the Minneapolis Institute of Arts Himalayan gallery. He is not, as often identified, the Tibetan Buddhist God of Death. He’s the god of conquering your own death. Contemplate yourself as a corpse. Feel what it will be like for your loved ones when you die. Practice being calm in dire physical situations. Whatever makes you really feel your absence from this world.
If death is not scary, then a potentially terminal disease isn’t either. What Yamantaka taught me has allowed me to go through this whole process with little anxiety. It allowed me to be present for conversations about what to do, for the treatments, and for the possibility of failure. It also helped me accept support and not push it away.
Worth considering for all of us in the third phase, I believe. Second phase, too, but definitely now as we live into the last phase of life.
Patty gave me a high five. Nicky gave me a medium blue Anova pull-over shirt. The Dixieland Jazz for the final ten was inspired. Felt like I was in the Quarter, beignet and chicory coffee in hand, water condensing on the glass at the Cafe du Monde.
In my discharge session I asked Dr. Gilroy again what he thought my chances were for a cure. “Seventy-five to eighty percent. I’d say ninety but you were in a high risk group. Really good odds.”
Also asked him how long he thought I needed to be on the Lupron, “Three to six months.” He repeated that in a note of our meeting. That’s great news for me because it means as soon as 7 months from now I could get a PSA that would prove definitive. Also would mean just one more Lupron injection. Oddly, if I read my Anova bill yesterday, which said we owed $139, the Lupron injections, at $189, are more expensive than the whole series of radiation treatment.
Before insurance coverage, the raw price from Anova for 35 sessions plus setup was $93,300. Yes, sir. The gasp was similar to the one I gave the nice lady at the Jefferson County license plate window. “$585 for your new plates.” What! “Yes,” she said, “this is the worst part of my job. Telling folks the cost.”
Kate asked me how I felt as we drove away. At that moment, not much. I still had to drive home. “Relieved that it’s over. Happy I won’t have to make the drive anymore. Not giddy, definitely not.” We agreed we felt cautiously optimistic.
Over the course of Kate’s long ordeal I got a real peak behind the curtain of medicine. Not that I hadn’t had one before with Kate, but this time I saw in action the high-wire act that medicine is. Doctors go with the best data possible. Sometimes that data’s not very good. Kate’s upper bowel resection had to be done to stop the bleeding, but the imaging studies done before surgery were inconclusive about the actual site of the bleed. Worked. Data and experience.
In my case the radiation treatment involved two scans that showed nothing, no mets. This meant that my rising PSA was most likely the result of a local recurrence, one confined to the prostate fossa, the area where my prostate used to be. Note the most likely. The radiation itself proceeds with care and precision, but in a black box. The radiation goes in, but did it do anything? Can’t know till the Lupron’s not on board anymore.
Awake at 3 this morning. Now that’s roughly 7 hours of sleep from my 8 pm bedtime, but still earlier than I’m used to. Same feelings as the last day of finals. Or, the day of a big event like a wedding or graduation. A bit wired, something momentous is about to happen in my world.
Was not expecting to have this much of a feeling response to the end of radiation, or, at least not this kind. Relief, yes. A sense of completion, yes. But, graduation? Which is the closest analogy. No. Why would I have an anticipatory feeling like that? I’ve not accomplished something personally. I got cancer. Took my treatment options and have followed one of them out to the end.
Patty asked me what I was going to do to celebrate? Go to the Black Hat Cattle Company, I said. When I said it, it felt inadequate, but it’s what I’ve got right now. I’ve not had much red meat over the last seven weeks, much less than usual, so I’ve got a hankering for steak. Maybe something else will occur to me.
Yesterday afternoon during my nap I had a hotflash that woke me up out of a sound sleep. It was the most intense so far. I’ve had milder ones, prickly heat on the scalp, face, back of the neck. This one left me tired afterward. Kate said, oh yes, that’s part of it.
As the radiation winds down, it seems that the Lupron is choosing to wind up. Oh, joy.