OK. Stomach still unhappy. Fatigue as I go up the stairs to the loft. Flickerings of something hot, as if the oven’s warming up.
When I told Gilroy my symptoms yesterday, “Not stomach upset for radiation. Some bowel trouble, diarrhea, later. Maybe you caught a bug?” Could it be the Lupron, I asked. “Hmm. When did you, oh, July 18th (a day after I started the radiation). Let’s see. Oh. Well. With Lupron the testosterone stays the same for first two weeks. You’re in the transition, between week three and four. Yes, this could be related to the Lupron.”
Not fun. Not awful or impossible, but not fun.
Yesterday I listened to the Rolling Stones. I now close my eyes, grip the ring for my hands, and listen to the music, getting lost in the rock and roll. The time passes very quickly. I’m up and on my way. After this week, I’ll be just a bit over half way done.
I’ve also noticed some mood changes, not sure yet whether they’re related. Thoughts going a darker, quicker. Got an e-mail from two of my good friends from seminary with whom I’ve lost connection over the years. She’s doing quilting and Japanese dying and he’s become a free lance illustrator. They both have a great looking web presence, grandkids and live in Cambridge, Ma.
So, the obvious thing is, they’re life’s better than mine. I didn’t do anything. Well, no, that’s not the obvious thing, but it is where I went. That sorta thing. I usually don’t slip over to envy about others. A fool’s game?
The tunnel has gotten a bit narrower, perhaps for a while. Gotta pay attention.
Something’s making me wobble. I thought it was a too eager use of bowel prep. When I got back from picking up our groceries, I came in the door with three plastic bags in hand, rushed past Kate, “I think I’m going to be sick.” I retched. Then, went to bed. Sunday.
Monday am was ok, even my treatment was ok, but when I got home, I felt off. A little nauseated, a little fatigued, generally uncomfortable. My body wanted food; but, my stomach said, go slow, so I stuck to ramen. Kate made me ginger tea, which helped, and some chicken flavored ramen. Felt better afterwards.
This morning I’m sleepy, tired. Stomach not quite right. I have a team meeting today, I think, with a nurse and Dr. Gilroy. Will check if these seem like side effects to them. Hope not, but they never promised a smooth experience.
Kate’s new choppers
Kate went to a Bailey Patchworkers meeting in the white Toyota. And, she has Needleworkers on Wednesday morning. She’s venturing out on her own, not carrying much, but at least showing up. Big, big advances. CBE’s annual meeting is Thursday night.
There’s progress here. Kate’s stamina has improved over an already big leap. Her weight is in the zone she wants. Perhaps not quite as much as she would like, but ok. We’re kidding and joking. She had enough energy even after a long day to make me some food last night.
Today is day 15 for me. When I get to day 17/18 (Th/Fr), I’ll be halfway done. Beatles yesterday. Stones today?
We’re getting afternoon rains, the monsoons. They help keep the wildfire threat down. Very grateful about that.
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.
This t on the last day of the week, radiation hazard t on Mondays
Cancer treatment has given my life a new structure for at least seven weeks. I workout in the mornings earlier than I have been, head to Lone Tree for a visit with the Cancer Predator and its priestesses: Patty, Nicky, and Kim, and return, tired, but knowing that I’ve accomplished something important.
I may, often do, cook supper, too. That’s a full day for me. It’s noteworthy for what it doesn’t include. Painting. Writing or revising. Doing much else except some TV or a movie.
I do read, of course. Reading a number of books right now. Wolf Moon by Charles De Lint. He’s an original fantasy writer and this is his werewolf novel. I’m still reading werewolf novels, watching werewolf movies, and reading about transformations and wolves in the middle ages. I Like to Watch by Emily Nussbaum. A collection of her essays on the Golden Age of television. She pegs its beginning with Buffy the Vampire Slayer. She had me at Buffy. The second novel of a duology about a Boston pathologist who intervenes in the millennia long history of werewolves from Arcadia. Lots of newspaper and magazine articles on the web. Essays on the Parsha Kate and I will present in September at the Bagel Table.
A once a week breakfast with buddy Alan Rubin from CBE. E-mail correspondence, a bit of Facebook. Feeding the dogs. Getting the mail. Ordering groceries. Yes. These, too. Trash. Those normal domestic activities. But the key focus is on radiation and taking care of myself/those I love.
a new fool’s journey has begun
Lupron therapy will extend past the radiation treatment, possibly for several months. It doesn’t have the same daily impact of a trip to Anova Cancer Care. There is though the waiting. Not for Godot, but for side effects. None yet. May that continue.
I will be under more surveillance, more regularly, again. PSA’s every three months for some time period. As long as I’m on Lupron, for sure, which could be as long as two years.
Another existential reality that I’ve not really come to grips with yet, too. My cancer returned only three and a half years after my first “cure.” As a result, my expectations for what cure means have been permanently altered.
Even if the ultimate result of all this radiating and testosterone suppressing is a long term drop in my PSA, there will always be at least a soupçon of doubt. I don’t believe I’ll ever be as carefree about cancer as I was after my prostatectomy. I thought it was over. Nope.
So easy to get lost in the polluted haze of Trump’s venal presidency. To have our heads down, shaking in disbelief. Wondering when this horror show will end.
So easy. Today though, on this day of tanks and flags, this day when we become like all the nations who try to show bellicosity as a symbol of national strength, I’m very aware it’s all happening far to the east.
Happy to sit high in the Rocky Mountains, far away from the beltway. I lift my head up and look out the window. Black Mountain is bathed in sunlight. So are the tops of the lodgepole pines in our front yard. The sky, a robin’s egg blue, makes all the green pop.
If I were to drive across the plains again, from here to the Twin Cities as I have done so often, I would cross green fields of wheat, of corn. The horizon would be once again flat instead of jagged. Reaching into Minnesota the plains slowly disappear, bumping up against the remnants of the big woods. It’s said that once a squirrel could go tree to tree from the Atlantic coast to Minnesota without ever touching the earth.
The Corn Palace, Mitchell, South Dakota
Near where the prairie begins to morph into another land form is Pipestone, Minnesota. A sacred place for many peoples native to this land. There the blood of mother earth has congealed into a soft, red stone, perfect for making the pipes used in so many rituals. If you go to the quarries, you can sometimes see folks working there, seeking blocks of pipestone. A very low tech procedure.
Driving on toward the Twin Cities, angling north and east, bean and corn fields begin to dominate. Cattle, pigs. Close to sea level and well east of John Wesley Powell’s demarcation line for the arid West, the 100th parallel (really now the 98th), Minnesota is in the humid east. Summer air is sticky, wet, and filled with bugs of various kinds.
In Minnesota the glaciers that bulldozed the plains left behind small depressions in the earth, over 16,000 of them. A journey north and east, turning due north some where beyond the middle of the state, will find a traveler in the North Woods, filled with lakes, and still more wild than civilized.
Burntside Lake, near Ely, Minnesota
It is up there, in the Arrowhead Region, where wolves retained their paw-hold on a U.S. presence. The Arrowhead’s eastern boundary is all shoreline, washed by the cold, deep waters of Lake Superior.
These are the parts of America the Beautiful that I know best. Minnesota and its northerness. The plains and their great level expanses, once filled with grass and buffalo. The Rocky Mountains which rise up from those same plains, suddenly, abruptly, far to the west of any silliness on the National Mall.
I will hold in my heart this day neither tanks, nor flags, nor bluster, but the rocky beaches of the Great Lakes, the farmland of southern Minnesota, the vast wheat fields of South Dakota, Nebraska, and Kansas, the upthrust mantle of Mother Earth’s crust where I now sit.
Camp Du Nord, Northern Minnesota
I’ve lived my life in these interior places of the North American continent, held for now under the politic rubric United States of America. They will still exist when this nation has faded into obscurity. And that makes me glad.
Heating up here. 94 down the hill. 73 on Shadow Mountain.
13th fraction today, then a four day rest. Got there early only to discover that they were running behind. Quick when I finally got in. ‘Yesterday was 12 out of 35. Bit more than a third finished.
Mozart today. The time went by fast. It starts with a whir of gears, then the bird’s head of the cyber knife begins to swing toward me. It stops at about my knees, seems to consider what’s next, then moves just above my abdomen. It’s choreography is the same as the little video you may have seen here.
There’s a moment when it dips below the table on my right side, then aims up from underneath. A whir, a twist, and it comes back up high. Finally it returns to roughly the starting position and swings away. Treatment done.
Kim, or Patty or Nicky come in and remove the rubber band from my feet, undo the loose velcro band over my legs, and take the small donut I use to give my hands something to do. The table is lowered to an easy height for getting up. I collect my things from the table, say good-bye and head back toward Conifer.
Today 470 was a mess going west (or north, if you’re silly enough to look at the compass). On occasion it’s bad. The construction to give users of this highway express lanes has been ongoing since we arrived. There are often different traffic patterns due to moved concrete barriers, dips and turns as the road shifts from one old portion of highway to a new one.
The Radiation Moon will take me all the way to August 1st, within 5 days of the finish. The Algonquin’s called it the Thunder Moon. In the traditional Chinese calendar the July moon is the Ghost Moon. The Hungry Ghost festival follows in August, now the month of the Ghost Moon. Thundering ghosts radiating from the heavens. Or, hells.
Last radiation day this week. July 4th long weekend ahead. Breakfast with Alan at Dandelion.
Not sure what we’re going to do for the 4th although we have never gone to fireworks. Crowds and up too late. In Andover we could see the fireworks the city put on from our house. Later, we could hear the fireworks loving neighbors displaying what they’d found. Meanwhile the dogs would cower in their crates or up against our legs.
Monsoon rains
In the fire prone foothills fireworks displays are often called off. This would be the year for them, since the fire danger is much less than usual. The monsoon season is here already with afternoon storms. You’d think the added water would get the fire danger back down to low, but it’s been stuck at moderate for the last week.
Trump’s very big, biggest ever, best ever fourth of July celebration. With tanks! You can see his mind turning over television news clips of military parades in Hitler’s Germany, North Korea, Russia, even some European countries. Oh, boy. Look at us. Big missiles! Big tanks! Lots of soldiers! Flags. We’re patriotic. We love America. Enough to put on a big fancy beautiful wonderful moment. When will it ever end?
Under the warmth of nuclear fusion’s endless possibilities my body takes in fractions of photon radiation, breaking the DNA of cancer cells and friendlies alike. Outside it was 83 degrees, the sun hitting us with more direct beams. Inside it was all Cyber Knife and its accelerator hitting me. Different nuclear generative processes, but both powerful in their own way.
This is a three day radiation week. The long July 4th weekend is time off, then back at it five days a week until done on August 6th. Yesterday I listened to Bach’s well-tempered clavier. Today, Berlioz. Night on Bald Mountain.
After I said I still had no side effects, Dr. Gilroy, in our weekly management meeting yesterday, said, “Well, you might slide through the whole time. In the last week there’s often an increase in urinary frequency.” Of course that’s just the radiation. The Lupron’s an agent all of its own. Still no side effects from it either.
Kate on the porch on Pontiac Street, 2015
Trying to feel my way toward the life after radiation. Kate’s feeling better, not all the way back, but much, much better. At first I was thinking about 7 weeks in the Cyber Knife tunnel. What it will be like when all the fractions have been given?
I realized though that we entered the true tunnel when Kate’s Sjogren’s began to effect her eating. A couple of years ago. The tunnel narrowed on September 28th, 2018, now nine months past. The bleed and its subsequent hospitalizations, imaging studies, doctor’s visits, and surgeries took more and more of both our energies.
Fortunately, Kate’s long ordeal began to have positive notes as cancer returned for me. If we’re lucky, and I think we will be, we’ll reach a point in September, after the second Lupron shot and a surveillance psa, when we can catch our breath, assess where we’ve been and where we’re going.
One of the tricks of living is to stay in the moment as much as possible without losing sight of life’s context. Not easy. The context includes the past and the future, yet we never inhabit either one. Only the present. Right now I’m living life fraction by fraction. One trip to Lone Tree at a time. One meal at a time. One workout at a time.
In September are the High Holidays, Sukkoth, Simchat Torah. The month of Elul precedes Tishrei, the month of the High Holidays, and as such is considered a time of repentance and preparation. Perfect for us this year. Too, on September 29th is Michaelmas, the springtime of the soul. In this instance Michaelmas falls on erev Rosh Hashanah.
And, in my own inner calendar, daylight’s change from 14 hours and 54 minutes on June 21, the summer solstice, to 11 hours and 53 minutes on Michaelmas, means that I’ll be moving further into the deep parts of my soul.
Looking gently forward to Elul, to Michaelmas, to Rosh Hashanah and Yom Kippur. This year Rosh Hashanah could be a true new year for us, the start of a healthier time. May it be so.
