Boy. I needed the time away from the cyberknife. Yesterday was a good day. Got my new workout done. Slept, read. Kate and I went to Brook’s Tavern last night. Felt almost like old times. Old times being a year and a half to two years ago.
Getting my gut under control has helped. I feel hungry, am eating more, gaining back some of the weight I lost last week. Also, I feel less miserable. I’m hoping I can maintain this calmer g.i. tract over the next three to four weeks.
When I sent a note to Sherry, Lupron Sherry, about my gut stuff she replied that it sounded more like radiation side effects. Which is good news, actually. Why? Well, the radiation side effects are temporary-at least most of the time. That means they’ll subside once I stop irritating my pelvis area with photons.
It also means that I’m in week five, going on week six, with the Lupron on board and no apparent side effects. May that continue. I want to get the maximum benefit from both the radiation and the Lupron, but that’s dependent partially on my ability to tolerate the Lupron. Looking good right now.
Life pared down here. Radiation. Sleep. Read. Be with Kate. The dogs. This life with the accretions pruned away has some benefits. It’s less cluttered. More focused. The radiation has given me a sense of purpose each day. A direct way to fight back against these rogue cells. The Lupron, too. No doubt about what’s important right now.
22 fractions absorbed. 13 to go. Bed bug means I won’t be ending on August 6th. August 7th. Two weeks plus three days and I’ll have the full 7000 cGy of photons.
This week’s been difficult. I’ve tried various strategies for managing my ouchy gut. Anti-nausea meds. Zofran. Miralax. Immodium. Results mixed. A general sense of gut not feeling right has pervaded my days and nights. Add to that fatigue from the radiation itself and the couple of hours in traffic. Result: low energy, unsettled, spotty eating. Glad I’m over halfway done.
Could have been worse. Could get worse. Seems like a fair price to pay for the possibility of a cure.
The fans up here are cooling the loft. A breeze is coming down from Black Mountain. The sun is up. The sky is blue. Another beautiful Colorado Rocky Mountain day.
2014
Kate went to mussar on Thursday while I was in Lone Tree. Yesterday she went to a memorial service for Vanessa, a long time member of the Thursday afternoon mussar group. I mentioned her a while ago. She had a degenerative disease that slowly shut down her organs.
Vanessa’s mind remained strong, supple but eating, chewing, swallowing was very difficult. Over the last week or so she had had trouble breathing. Her spirit remained good.
We had a neighbor in Minnesota, Greg, who developed MLS. He also deteriorated over time, but his spirit turned sour. Why him? Why this disease? Why didn’t people treat him better? He died last year.
We’re not promised a smooth ride. And, most of us don’t get one. Gratitude is one antidote. Vanessa remained grateful for life, for friends, for family, for her faith. She lived fully even as her body betrayed her. Greg was not grateful. He lived miserably, then died.
Kate and I have plenty of opportunity to express our gratitude. From distant friends who stay in touch to family, grandkids, CBE folk. Lots of help, encouragement and love. Thank you all, again. Still.
An orange disc slipped up between two cumulus clouds, darkening one and throwing rusty beams on the other, the Radiation Moon. We drove home from MVP. Up Brook Forest Drive.
At the curve before Upper Maxwell Creek the moon rise showed itself in the cleft of Shadow Mountain. These vignettes, available and free for those who choose to see, give us a glimpse into the wonder, the beauty, the power, the mystery of our universe. Those who knew it as caterpillar may not recognize the butterfly.
The middot of that night’s meeting was awe. Yirah. Often translated, especially in Christian translations of the “old testament” (doesn’t feel old when it’s ever present in the life of CBE) as fear. Fear of the Lord is a common phrase, usually meaning faith.
Marc Chagall
“We are to love God. Can we love that which we fear? Stockholm Syndrome. Can we love that which is distant? What is love? Are we in some way held in relationship by fear? What does that say about our relationship with God?” Susan offered several provocative ideas for discussion. We left-my stomach made me do it-before the conversation got to this set of questions.
Sent this note to Susan about them: “Awe is the main driver of my (small r) religious life. I experience awe looking up at Black Mountain, down at the Columbine, when I eat, the true transubstantiation, when I see others, knowing their inner life is as rich as mine, but hidden. Awe begets gratitude. Gratitude begets simplicity. Enough for me.”
My friend Rich sees mussar as a metaphysical, not a psychological discipline. It’s soul work, deeper and more consequential than therapy.
Over the last year and a half my skeptical view of soul has begun to break up, fade away. First, from the Cosmos and Psyche (thanks, Tom) insight: Skepticism is a tool, not a lifestyle. Second, from a spiritual realization that despite its implication in the arguments over, say, original sin, soul nonetheless points to a felt reality for me, a phenomenological knowing. Not a dogmatic or doctrinal one.
Big deal, right? You always knew this? Or, no way, dude. Either way, so what?
And, of course, you’re right if you follow this often used, little understood idea back to its sources in Judaeo-Christian thought. Its use either assumed-you always knew this, or, so mean and inhuman, eternal hell for a few years on earth-no way, dude.
The Judaeo-Christian understanding incorporated the Greek notion of psyche, “…the mental abilities of a living being: reason, character, feeling, consciousness, memory, perception, thinking” with a notion of immortality connected to behavior in this life.
I want to push back, back beyond this narrow conception of soul. There was an assumption among the ancient Greeks that soul had to have a logical faculty, and, that it was the most divine attribute of a human soul. ( The current scientific consensus across all fields is that there is no evidence for the existence of any kind of soul in the traditional sense. Wiki.)
First I want to speak for the trees. Let’s call it the Loraxian understanding of the soul. The lodgepoles in our yard, crawling up Black Mountain, growing along Brook Forest Drive as it winds down the mountain. They have souls. They are both alive and animate, creatures with a telos, or end goal. They interact with their environment and grow strong or weak, tall or short, but they remain lodgpole pines, trees with a particular role in a montane ecosystem, a role which they give all they have to fulfill.
The same is true for the mule deer, the mountain lion, the marsh marigold, the elk, the bear, the fox, the squirrel, the dandelion, the cheatgrass, the Indian paintbrush, the mountain trout, the raven and the magpie. Are their souls more or less than ours? Wrong question. Are their souls more like ours or more unlike? Don’t know. I just know that living things on the planet share the wonder of life, an independent spark. That spark gives us organic matter that moves and does so with intention.
Holy Well, Wales, St Dynfog
I’ve felt this way about the world for a long, long time. Taoism, Emerson, the Romantics, gardening, the Celtic Great Wheel. The mystical moment on the quad at Ball State. Oneness. With it all. I’m even willing to entertain faeries, elves, duendes, daiads, Gods and Goddesses. OK, I know I lost a lot of you with that one, but I’m going with my gut, my revelation to me rather than the dry dusty bones of theirs.
But. I want to push one step further. I believe in the spirits of the mountains. They have visited me here on Shadow Mountain, the mule deer on Samain, 2014, and the elk on my first day of radiation. The mule deer and the elk were angels, that is, messengers of the mountain gods, dispatched by the careful, slow, deliberate entities that are the Rocky Mountains.
I believe in the vitality of rushing water in Maxwell Creek, Cub Creek, Blue Creek, Bear Creek, the North Fork of the South Platte. I believe in the entity that is Lake Superior, that is the great deposit of ores on the Minnesota Iron Range, the ebb and flow of the Oglalla Aquifer.
I believe in Mother Earth, the great Gaia, a living system of ecosystems, biomes watered by rains and the snows, irrigated by streams and rivers, planted by Boreas and Zephryus, and given power to change by the true god, Sol.
Neither animals nor plants can grow without the sun’s energy or the food locked in minerals and vitamin: “Our soils support 95 percent of all food production, and by 2060, our soils will be asked to give us as much food as we have consumed in the last 500 years. They filter our water. They are one of our most cost-effective reservoirs for sequestering carbon. They are our foundation for biodiversity. And they are vibrantly alive, teeming with 10,000 pounds of biological life in every acre. Yet in the last 150 years, we’ve lost half of the basic building block that makes soil productive.” Living Soil film
As it appears, I am an animist, a pagan, a person who has found his spot in the great scheme. I’m a moving instance of matter formed in the great fusion furnaces of stars. I’m a temporary instance, holding together a few atoms for a human lifetime. I’m a significant instance of meaning created by the universe observing itself, throughout my short path, as the dynamic, interlocked, soulful reality that it is.
I need no human word to guide me. I need no idea, no rule. I am and I am within all this. The Arapaho National Forest. The Rocky Mountains. Our nuclear family. Our extended family. The community of folks at CBE. The United States. The Mind of God.
My soul and that of Kepler, Rigel, and Gertie dance with each other. In Andover Kate and I danced with bees, fruit trees, perennial flowers, vegetables, raspberry canes. Here we dance with the mountain spirits.
Long ago I set out on a spiritual journey that went down and in rather than up and out. That is, I would not find validation somewhere outside of myself whether Torah, Gospel, Constitution, or political ideology. I would not privilege the idea of transcendence, or a three-story universe. No god is in heaven, and yet all’s right with the world. My ancient spiritual trail has been to turn within for the source of my revelation. And, I have not turned back.
“We’re a pair.” A phrase often on our lips. Kate loads up her feeding tube with Jevity, tapes it to the bed, and gets most of her calories overnight while sleeping. I go to bed two or three times a day trying to quiet my stomach, hoping it will be up for food later. My muscles ache as I go up the stairs to the loft. We’re trying to sort out now whether between the two of us we have one functional adult. A bit of a stretch right now, I think.
Yeah, we’re beyond waiting for the side effects. The Lupron’s expressing itself in multiple ways: nausea, gut pain, diarrhea, fatigue. Lassitude. None of this is too awful. So far. On the other hand it’s not great either. The walls of the tunnel have narrowed even further for me, though Kate’s tunnel has gotten wider.
2014
Gratitude here for her recovery. She takes off for the grocery store, the liquor store just like old times. Sorta. By that I mean those trips usually are the peak activity of the day. Way more than she could have done even two months ago, however.
In sickness and in health is a dominant theme of our marriage. I’ll be happy for that to recede, but we’ve both been able to be there for each other. Wonderful.
We’re at a point where we need some help with meals. At least until the radiation is done and a week or so after that. I usually don’t have the energy to cook and Kate’s stamina gets a challenge from standing for a long time. This is temporary.
I’m still ok to drive since the “good” part of my day comes around midday when I travel out to Lone Tree.
Instead of Travels with Charlie this blog has become the Travails of Charlie. I know that. But, it’s my reality right now. A Woolly friend wrote to me and said three of his friends have prostate cancer. As we get older, that number will go up. Maybe somebody can get some solace or ideas from reading these post. I hope so.
Yesterday. Sleepy, stomach upset, et alia. Stayed in bed, got up, had some cereal while Kate and Ruth were at the grocery store. Back to bed.
At the Rockies
Afternoon. Ruth and I spent a good time in the loft talking about haiku, wondering when we’d each get back to oil painting, her upcoming trip to NY with Jon and Gabe. Week After next.
She and Gabe are at Hemophilia family camp this week. Something they’ve done together for several years. Then, on August 8th, back to school. Ruth is an 8th grader. She volunteered to help with orientation for entering 6th graders like Gabe. So, soon.
Ruth mowed the fuel yesterday; Gabe reorganized Rigel’s destruction of my improvised guard wall. Brick pavers in 5 gallon Home Depot buckets placed where she likes to burrow under our back deck.
Ruth and Kate, then Gabe and Kate, made trips to the grocery store. That Kate. She’s going. When she asked me later if I could cook. I said, no. Just too weary. Was hard to say to her. Ruth helped. Cedar Plank salmon, buttered egg noodles, and peas. Most excellent.
Well, hungry and tired. Not late, though. Or, Angry. Gonna go take care of both of those.
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.
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.
