Zoom, zoom. Zoom. From the land of First Light to the top of Shadow Mountain, two in the land of sky blue waters. Friends. Bytes and pixels. Sight and sound. Remember when video phones were still a thing of the future, the distant future? We knew somebody from Bell Labs would create them, but when?
Still no flying cars, but there are multiple instances of the video phone. Zoom and Skype, for sure. Kakao, which allows full on video calling. I know there are others I haven’t used.
These forms resolve one of my problems with the old, voice only phone. No facial expressions. No interaction of a bodily nature except for vocal cords and the ear. Too thin for me.
We spoke of gum and sealing wax and other fancy things. Laughed. Nodded when we gave our ideas about patriotism. Complicated, as Mark said. Mostly we reaffirmed our friendship, saw each other in body and soul. A fine thing to do on a Sunday morning. The church of friendship.
In trying to get back to full bowel readiness for the 4th chapter of the Radiation Tales I went too far. Body rebelled. Nausea. (OMG! Is this a side effect? God I hope not.) Finding the balance for preparations is not easy. Pretty sure I brought this one on myself. In bed early with no supper. Stomach still ouchy this morning. Insulted.
It’s a beautiful day in the neighborhood. Expect to hear Mr. Roger’s, “Won’t you be my neighbor!” Toot, toot of the train.
Back to the beano. Radiation vacation is over. Put away the seltzer water. Chapter four of the photon chronicles starts tomorrow. Now it’s every day till the finish.
Still in the tunnel. Moving deliberately, neither slow nor fast. Holding in my heart this saying. My commitment is to the process. Yes, I hope it’s curative; but, it’s the route I’ve chosen and that is enough.
I’m grateful to the whole chain of folks involved in my care. Eigner and Willis for getting me quickly to Anova. Gilroy for a treatment plan. Nicky, Kim, and Patty for their kindness and care. Carmela for her brightness. Amanda for taking my need to make progress seriously. Kate for listening as I offer some new fact I’ve learned or a skewed feeling, for her own recovery. Alan and his steadiness. CBE for multiple mitzvahs. Shelley for the Lupron. Even Nari for his help with the new car.
And of course there are the folks I’ll never see. Fermi. Einstein. Nuclear engineers. Medical engineers. The dosist. The medical physicist. Inventor of the Cyber Knife. That train of thinkers and tinkerers who developed this particular instrument.
Yes, under the radiation moon, I will almost complete my treatments. They will end on August 6th and the new moon is August 1st. By then I’ll have an idea of what, if any, side effects radiation will bring. The new moon I’m going to call the Lupron moon because I should be well into the period when ADT might start causing side effects.
I had a brief scary moment while I did my workout this morning. Over the last couple of weeks two dementia related cautions have appeared in the press. The first, about anticholinergic drugs said users of these drugs faced a 5% increased risk of dementia. I’ve been on tizanidine for three years. It’s a muscle relaxant I used because my left shoulder had become painful. I stopped taking it.
The second caution was about ADT, androgen deprivation therapy. That’s the Lupron. I’ve focused, as I’m sure most do, on the side effects that can come with the drug right away: bone softening, mood changes, hot flashes among others. It’s a little confusing about the dementia/Alzheimer risk, but it seems 12 months of ADT can increase the risk of dementia by as much as 20%. That’s a lot.
The scary moment was: my god, what if I cure my prostate cancer and get Alzheimer’s? The good news, your cancer is gone. The bad news, you can’t remember you had it in the first place. My mood sank.
My mind went, unbidden, to a despairing thought. Is this all worth it? What if I do get a cure, but the treatment gives me dementia? Screw it. I’ll just give up. This is too much. Cancer and this risk? Too fucking much.
It was the sort of thing I’d usually suppress. Nope. Not gonna consider that. Enough already. Get back to the workout, let the exercise drive it away.
No. What? No, I said.
Oh, ok. What, then? Let’s look at it. Yes, dementia/Alzheimer’s scares me. But. The risk is an increase in the percentage likelihood of my becoming demented. No dementia or Alzheimer’s on either side of my family in my first level relationships. I exercise, which protects me to some degree. I challenge my intellect, learning new disciplines, painting, writing. Studying Latin, Judaism. If my risk is low, as I believe it is, then a 20% increase is probably negligible. Let’s say I have a risk level of 25%. A 20% increase in that would take me up to 30% overall. 2/3 of US Alzheimer sufferers are women, too.
Now the cancer risk. ADT increases my chances for a cure in the 5 to 10% range. Radiation puts me at 65 to 70% chance of a cure. With the two together my odds become 70% to 80%. And, I have the cancer. Right now. Conclusion for me? Follow the treatment. Take the risk.
Result? I don’t have a suppressed fear. I looked at it, recognizing anxiety that seems natural to me. That anxiety prompted me to look more deeply. I’m making an informed choice to stay with the treatment.
Speculating further after my post on Wild, Wildness, Wilderness. Wilderness is a place where humans rarely go, a place where the ebb and flow of life depends on plants and animals, not the artifice of roads and streets, buildings and houses, stores and parking lots. (I’m bracketing the climate change influence for the moment.)
Thought about cancer. Realized that the interior of a human body, even, perhaps especially, your own body, is a wilderness, too. Rarely visited by humans, very, very rarely by yourself-colonscopies, imaging work, sonagrams, echocardiograms being exceptions, of course, but in those cases the boundary of the wilderness is not opened. It’s penetrated by beams and rays and sounds.
As my old internist Charlie used to say, “We’re all a bit of a black box inside.” The inner world is not all that’s hidden from others; the inner world of the body is hidden, too.
We carry wildness and wilderness with us wherever we go.
The wind blew up last night as the sun set. With it came the yellow cloud, lodgepole pine pollen. The yellowness, which looked like smoke, refracted the deep reds of the evening sky. Coulda been fire. The fine yellow powder settles on everything. We’ve been lucky so far because the rain has knocked down a lot of the pollen. Not now.
It’s a wild sexual orgy, a sign of midsummer, as the lodgepoles go through their ancient reproductive strategy. Here’s an evocative sentence from Walking Mountains: “With their strobili unabashedly protruding and their ovules wide open, the young gametophytes stand ready to receive the blasts of pollen from trees near and far.” 50 shades of green.
When I was in Lone Tree yesterday, the truckometer read 100. I drove the older Rav4 since Kate volunteered to take Mary all the way to the airport. Stifling.
Sushi Rama
Two weeks out of seven over, 10 fractions beamed into my prostate fossa. The weekends are off. I’m finding I really like the break. To reward myself for a solid two weeks of radiation therapy I followed Ruth’s recommendation and found Sushi Rama. So-so. But fun. The conveyor belt idea works very well, I imagine, when the customer base is large and consistent throughout the day. Variability in a burb makes some sushi get that old and tired look.
Jimmy Johnson. Woolly, artist, designer, wayfinder, South Dakotan. He emphasizes an old men’s movement idea, the wild man. Find your inner wildness. Keep it alive. Present. That way our vitality remains.
OK. But. Cancer. Is wild. Exhibits a form of wildness that has no care for its environment. Only about replication at the expense of whatever can feed it. Sorta like capitalism. Especially fossil fuel companies.
A certain form of inner wildness has found me and I don’t like it. It’s the opposite of the wild man’s inner wildness. Instead of bringing vitality it feeds on life until it is no more. Again, like capitalism, especially fossil fuel companies.
In another sense though cancer’s wildness is no different from any wildness. It’s red in tooth and claw, survival of the fittest it’s prime directive. This vast forest, the Arapaho National Forest, in which we live is like that. Wherever there are deer and elk, there are mountain lions. A Rocky Mountain truism.
The mountain lion feeds from its environment, is ruthless and opportunistic. As an apex predator, the mountain lion may have no enemies here, but after the mountain lion dies, the forest will absorb their essence, put it back into the plant world. Which feeds the deer and the elk. The circle of life.
Cancer is part of this. It’s an element of the natural world just like decomposition, photosynthesis, a mountain lion attacking a mule deer. This wildness within me lives by the laws of natural selection. It doesn’t care who I am anymore than the mountain lion cares which mule deer they can catch. Cancer is predator and I’m its prey.
Luckily I have a means of fighting back. Even so, cancer is wily, persistent. It’s an open question whether this prey can take out so formidable an adversary. TBD
Kate’s recovery continues to go well. She drove the half hour to PetSmart and picked up Kep yesterday. I took him in on my way to the Cyber Knife. She’ll also drive Mary to the Federal Center RTD stop. Mary tried to find a shuttle or taxi and experienced the mountain way. Either not possible or folks didn’t answer the phone. Wish I could take her, but the Cyber Knife beckons.
Mary’s working on school libraries in Singapore. They’re surprised when I tell them I have Masters Degree in Library Science. Libraries are under a lot of pressure these days and are rethinking how they fit into colleges, universities, communities. Mary has helped the nation with her knowledge of how students actually use libraries. She’s so successful that she’s working well past the usual retirement age. Unusual. Kudos to Mary and her internationally acclaimed work.
Brother Mark likes to comment on the Vietnamese currency, the dong. He says it’s drooping right now. What kind of stimulus might make it rise, he wonders. LOL. He’s on vacation, plenty of time to consider the world around him.
With nine treatments my inner glow has increased. I may be a beacon on Shadow Mountain for aircraft trying to orient themselves. Listened to the Cream yesterday. Nicky was not familiar with them, but she knew Eric Clapton. The Cream was one of the first super groups: Clapton, Jack Bruce, and Ginger Baker. I saw them in a weed smoke filled theatre in Chicago’s old stockyard district, maybe 1968. Got stoned just sitting there.
No side effects so far. But. Every ache, like the hip ouching me as I fed the dogs, or some shortness of breath, or general weariness makes me wonder. Is this it? Are the side effects commencing? No. No. No.
Well, at least I think no on that last one. It’s hard to separate the fatigue from driving back and forth, the treatments, pushing myself to get all my exercise in, and any that might be the result of either the radiation or the Lupron.
goes over the faded Baby’s On Board
A strange place to be. Waiting. Not wanting to invite trouble. The runup to both treatments had a lot of focus on the side effects. Cancer care is like that. Here, take this. It’ll help kill your cancer. And, oh, by the way, your hair and teeth will fall out. But that’s only temporary. Oh. Good.
Most important of all: remember why radiation, why lupron. Kill cancer. Go for a cure.
Been focusing on simplicity of the heart as I drive back and forth, reminding myself to stay in the moment, to not let other drivers, current circumstances drag me out of my inner calm. Tough for me, but really good practice. I failed yesterday when a peloton rode up narrow, no shoulder Shadow Mountain Drive. “Ride single file!” I yelled out the window.
Simplicity is about navigating the churn, the “blooming, buzzing confusion” that is our mind, as William James put it. I’ve taken to using advice for people experiencing panic attacks. Find five things you can see. Five things you can hear. Five things you can feel. I like this because it echoes techniques I learned long ago from the existential psychologists like Carl Rogers. Grounding. It helps.
Left early for Lone Tree, around 8 am. Had to find my Lupron. Met Shelley, the four-month transplant from Georgia. She’s a nurse practitioner who came here from a 45-doctor group. I’ll be your prostate cancer guru.
We talked. Nobody likes these side effects, Shelley said. She especially underlined hot flashes. Black Cohosh was her top recommendation. A plant based product you pick up in the herbal supplement segment of a drugstore or grocery store. Some have mild hot flashes, some not so mild, some extreme. We have a medicine we can give you if they get really bad. Didn’t find that reassuring.
She also told me to get a calcium-vitamin d3 combo. Lupron makes your bones soft, Shelley said in her distinct Southern drawl. If you fall, it’s easier to cause a break. She also gave me a copy of the Man Plan. Geez. It’s an exercise program for those getting dosed by Lupron.
I have to go back to see Shelley in September. Apparently Lupron alone can suppress the PSA all the way down to zero. That’s why you put up with the side effects. It doesn’t cure cancer, but it can slow it down. I don’t understand why blocking the cancer’s main energy source doesn’t cure it. A question I’ll have to ask.
So. Put a negative sign in front of each of these.
She gave me two pamphlets, a folder with helpful hints, and, a shot of Lupron in the left hip. Didn’t hurt much though it can. They asked me about it later at Anova. Had a couple of hours until my radiation, so I hit breakfast spots near me on my phone. Found the Three Griddles a couple of miles away.
It was, synchronistically, a Southern breakfast joint. Shelley would like it. I had corned pork on cheese grits with two eggs over easy. No coffee though. Two glasses of water. While enjoying this taste of Savannah, I read about Lupron.
Later at Anova my second session got delayed by an emergency for some guy who looked gray, sick, unhappy. Then it got further delayed by gas. I’ve been following the recommendations. I want to be a good patient, help them align the Cancer Predator, so I felt a little ashamed.
Baroque music this time. A poor choice, it turned out. The piece that played longest was downright funereal. Not the mood I was looking for while a red laser beam bisected my torso and the Cyber Knife did its robot dance around me.
Not this
Afterward I got a note from Dr. Gilroy to get Beano and Miralax. I drove through Deer Creek Canyon. Stopped at King Sooper. Bought the Black Cohosh, the calcium plus vitamin d3, Beano, and a big bottle of Miralax. Fun times.
Here’s the takeaway on this, the third day of treatment. The Lupron is racing around right now suppressing the manly hormone. The radiation has begun its job of killing cancer cells. I don’t know what the side effects of either of these are going to be.
Is the loggy feeling I have this morning normal or the Lupron? Will the hot flashes start? What about that achy knee? A strange sensation, waiting, not for Godot, but for the first sign of a foreign agent’s impact on my body.
Told Kate last night that I’m used to taking pyschoactive drugs. There’s a period between when you take them and when they begin to alter your mind. But, I said, in that instance I’m expecting something pleasurable, significant, interesting. In this one the primary purpose, killing cancer cells and suppressing testosterone, is silent, while the knock on effects of the treatment is neither pleasant or significant or interesting.
Next week Monday is my first radiation treatment. On Tuesday the first Lupron injection. The radiation continues every weekday until August 6th, which is both the Hiroshima anniversary and Raeone’s birthday. (Raeone is my ex) Not sure what to make of that. Also, Sunday is Father’s Day. I told Kate I wanted a Geiger counter. Hope she knows that was a joke.
Gonna try to have a little fun with this. Don’t want things grim, mordant. I found a gift shop in Los Alamos and bought a couple of t-shirts. Only found an image I could reproduce for one. I intend to wear both of them, off and on, for my treatments. As soon as they get here.
Been reading a book about Androgen Deprivation Therapy. Helpful. It may not be as bad as it sounds, at least for me. The longest I’ll be on Lupron is two years, probably less. The intense side effects seem to emerge over longer periods of time. Hope so.
October 9th, 2018
In a twist not unlike prostate cancer treatment the day after Father’s Day and ending on the Hiroshima anniversary Kate continues to improve markedly as my journey heads into a difficult period. Her affect is almost bubbly. Sort of. Not sure Norwegians do bubbly, but she’s feeling good.
Her weight is at 99.4! Wow. 76 was the nadir back in February, I think. The j-tube feedings, with some minor exceptions, go well and she’s able to eat more, too. We had shrimp scampi, rice, and Brussels sprouts last night and she ate a full plate.
Showing off her new crowns on May 13, 2019
Our relationship has had the sort of strains that you might infer from a long, long bout of medically related bad news. Eight and a half months now since her bleed and she was not well before then. But open communication kept us out of any deep potholes.
Our partnership, this marriage that got started in the seats of the Ordway Theatre, St. Paul Chamber Orchestra concerts, is stronger than ever. I wrote much earlier that adversity unveils gratitude. So many people show so much caring. Well, I would add to that today that adversity deepens love.
On the way over for my planning ct I thought about cancer from a Great Wheel perspective. Winter is coming for us all. We know that and the Great Wheel reminds us that the cycle is the same for all humans. On NPR long ago I heard a doctor say, “Everyone forgets that the death rate for each generation is 100%.” Oh. Right.
Cancer is one of the many guarantors of our personal winter. A friend of mine decided to see cancer not as an aggressor, but as a visitor, a guest in her body. All right, if that’s the way you see it.
I look at it differently. I do not see cancer as a visitor or a guest, certainly not as a friend. I don’t see it as an enemy either. Rather, thinking again in a Great Wheel way, I view cancer as a weed. One definition of a weed is a plant out of place. Not sure if cancer has a place in the same that way a dandelion or a Canadian thistle does, but the idea is very similar.
2013, Andover
Cancer, like a weed, wants to thrive, needs to thrive, at the expense of the garden in which it grows, my body. It’s not evil; it has no intention beyond survival, but its survival and mine are incompatible. So I want to get down on my hands and knees, take out my favorite Japanese gardening knife and cut the little bastard out.
Since I don’t have, like Archimedes wanted, a place to stand to do this task, I’ve chosen the folks at Anova Cancer Care and their Japanese gardening knife equivalent, the Cyber Knife. Just like in a garden, it’s important to remove the weed and not damage the tomato plant or the carrot or the bean plant growing next to it. Care must be taken.
Today the inner landscapers of Anova looked at my pelvic area under a ct. Their goal was to establish firmly the boundaries of my garden, the weedless part of my body. They do this by locating my pelvic bones, my bladder, my rectum, then drawing a cyber-volume of space in the prostate fossa. That space comes up to the edge of the rectum, “kisses the bladder” as Dr. Gilroy said, and has wide enough margins to include as much of that volume as possible without doing damage.
2013, the healthy garden, Andover
Inside that volume is the weed. The cancer. Each day, five days a week, from June 17th to August 6th (no glowing on the 4th and 5th of July, God bless America) the cyber knife will beam 200 cGys of radiation into that small plot, a now empty and weedy bed. Over the 35 treatments I’ll get a full 7000 cGys of radiation, hopefully enough to weed this troublesome patch of my garden.
On Tuesday, June 18th, I go to Anova for my first Lupron shot. This is the second gardening tool. It focuses on what feeds the weed, testosterone. And removes it. It’s a blunt instrument though, unlike the cyber knife. It goes into the whole body and shuts down the testicles and the adrenal glands as far as testosterone production goes. It is, in effect, chemical castration. Oh, goody.
I’ve said, not in jest, that I knew I was a gardener when I began to side with Farmer McGregor in the Tale of Peter Rabbit. Now I’m on the side of brother radiation and sister Lupron. Weed out those wee bastards. Just go for it.
What Lupron will achieve for me
Here is a list of the common side effects from Lupron. Other than these it makes you feel great.
redness/burning/stinging/pain/bruising at the injection site,
