Hoo, boy. Gonna be hard. Gut felt twisty, gassy last night. Painful, too. Bowels ornery. Lost three pounds on Wednesday. These are the only frank side effects I’m feeling (oh, and the fatigue), but they are plenty. If they never move on from this intensity, it will be a strained time until they abate.
Kill cancer. Yes. Kill cancer. Yes. Do it while sitting in the chair eating ice cream and watching old movies? Looks like that’s not gonna happen.
Will affect exercising if the bowels stay gripy. Incompatible with much resistance work. Don’t like that.
Not to mention losing sleep. Which I did last night. Ugh.
There’s this epistemic question, one I mentioned a while back. How do I differentiate side effects from other, normal difficulties. In this case it’s duration and consistency. Since last Sunday afternoon, I’ve felt more fatigue, had an angrier gut, and gone through many unhappy moments with my bowels.
If this is the way it’s going to be, or worse, well, that’s the way it will be. I’ll have to adjust as best I can.
Contacted On the Move Fitness. Dave, of Deb and Dave, my personal trainers there, is going through some combination of chemo and radiation as well. Next Tuesday I’ll get a new workout, talk with them about how to modulate it with my symptoms.
Hard to stay healthy when the treatment for your illness makes you feel sick.
Looks like the ride’s going to have turbulence. I feel much better than I did Sunday and Monday, but I still have a jangly feeling, my stomach has become unpredictable, and my bowels want complete and rapid elimination of any thing I throw down there. Also, fatigue. I feel tired, the muscles of my legs communicating exhaustion, with no noticeable activity to explain it.
There is good news. Ignoring the fatigue I got on the treadmill yesterday, did fifteen minutes instead of twenty, but moved right on through my whole workout. Slighter lower weights at some points, but mostly right where I’ve been. Felt fine afterwards. The fatigue is, to some extent then, a mirage. At least now.
Plucked my radiation hazard tee out of the dryer, put it on with my new Amazon basic’s gray sweats, tossed the electronic key in my pocket, pressed the button on Ruby (as Kate calls our red Rav4) to start her up. Two bottles of water by my side I headed down Shadow Mountain Drive to 285.
The drive remains the most challenging part. Due to the heavy construction not only are there lane shifts, concrete barriers, and oddly placed entrance lanes, but dump trucks, trucks for carrying loads of soil, the occasional piece of heavy equipment. The car and SUV crowd, like me, seems divided between those who follow the 55 mph speed limit and those who can’t be bothered. The result is lane weaving, brakes, slow downs, speed ups. About 14 miles worth.
With the fatigue my only real desire when I’m done is to drive the gauntlet going the other way, get home, and go to bed. Not sure whether this will be the new normal, whether it will get worse, or better. Better in the distant future, I think.
Cancer’s negative affects on me have all, so far, come from treatment. The surgery and post-op recovery. The Lupron. Weekday radiation treatments. Which is weird if you consider it. Cancer. But, no symptoms I can feel. Treatment and side effects that I can.
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 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.
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.
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.
Another Yankee Doodle birthday. SeoAh turned 41. The U.S.A. 243. SeoAh’s birth culture is thousands of years old, as is Joe’s.
We’re such a baby from a historical perspective. Our relative youth is on display in every interaction we have with China, an ancient civilization like Korea and India that has lasted into the time of nation-states. One commentator I read a while back refers to China as a civilization state, rather than a nation state for that reason.
China engages the world as a regional hegemon, a role its held for most of its long history. It abuts so many different cultures, unlike the U.S. Vietnam, India, Myanmar, Bangladesh, the Himalayan kingdoms, the Stans, Russia, North Korea, even Japan if you see the South China Sea from China’s perspective. It does not share the great geopolitical advantage of the U.S., world ocean moats on both eastern and western borders.
The dynastic period of China, begun during the mostly lost in the mists Xia dynasty, only ended in the 20th century with the Qing ending in 1912. Thus, there are patterns and assumptions built into even the Chinese Communist party that reach far, far back in the Middle Kingdom’s political experience.
Among them is strategic patience, a trait sorely missing from U.S. foreign policy in the 21st century. The Chinese waited until its 99 year lease on Hong Kong was up, then reabsorbed this city-state. Not without difficulty, yes, but even the one country-two systems policy has Hong Kong, like Tibet, as an administrative district of the larger nation. They are also waiting to absorb Taiwan, sometimes patiently, sometimes not.
The world is big enough for China and the U.S. as regional hegemons, not big enough for either of us to dominate. China knows that. I’m not sure we do.
If I could have a birthday wish for the U.S.A., it would be a leavening of our foreign policy with the wisdom of history. Hard to pull off when our supreme leader doesn’t read, I know. We, as a citizenry, may have to exercise strategic patience with him and his followers. Trump and his base are not the vanguard of a revolution, rather they are equivalent of the village peasant in traditional societies.
They are defensive in posture, that’s what America First means. You only wish for America First if you believe we’re already somehow less than others. I don’t.
DJT and his cult hold onto economic givens long out of date. Manufacturing and its supply chain, though still crucial to our economy, we’re #2 in the world after, guess who, China, has been in steady decline as an employer since the 1990’s, continuing a long slide begun in the 1940’s. see this Wikipedia article. Tariff man reflects a belief that the U.S. is somehow getting screwed on a regular basis.
They hold onto social givens like fear of the other, affecting immigration, race, and gender identity. The unearned privilege of the white American male is still regarded among them, and their leader, as a privilege given by hard work and innovation, rather than a teetering social contract based on patriarchy and ruthless oppression of minorities.
This is a passing phase, often at its strongest when its proponents sense their weakness, perhaps for the first time. Strategic patience involves doing everything possible to align their national political influence with their actual minority status. It means working against the Proud Boy in the White House and for politicians existing in today’s world, not yesterday’s. It also means not succumbing to despair or nihilism.
That’s tough, I know, especially with the climate crisis literally breathing hot air on our necks. But one way to not succumb is to do what is possible politically while focusing on those local and state level initiatives that will position us later for strong climate action.
Standing with you all in this, our 243rd year of a grand national experiment: Can a nation be built on political values rather than culture?
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.
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.
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.
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.