32 degrees this morning on Shadow Mountain, raining. Fog grays out Black Mountain. So far our usual summertime foe, wildfire, looks less formidable. At least for this year.
And, yes, if you, reader of Ancientrails, are tired of the medical overcast here, so am I. However.
As Kate and I talked yesterday, I told her about my new friend David, who has a prostate cancer situation more dire than mine. His has metastasized. He said, “I’m good at compartmentalization.” I’m not. Don’t want to be.
I’m a realist. Neither optimist nor pessimist. I want to know what is. There’s good evidence in psychological studies of depression that realists end up depressed more than optimists. That optimists are happier than realists or pessimists. May be. Still can’t look away.
That’s what you’re reading here. My attempt to see. Inside and out. And, even though I learned from Cosmos and Psyche that skepticism is a tool, not a lifeway, surprise; it’s a tool I’ve used so long that I can’t put it back in the toolbox, hang it on its little outline on the pegboard of my mind. Skepticism and realism have never made me the life of the party. Debbie Downer might be more apt.
Yet some deep commitment to honesty, learned I’m not sure where, keeps me realist and skeptic. I don’t like being manipulated, by others, by institutions, by myself. So I long ago chose to deal with the psychological fall out of the examined life, a fair exchange in my world. Not always pleasant, but cleaner. Candid.
Important note. Whether or not I get a cure from this combination of radiation and hormone therapy, together they will slow down the cancer. That means I’ll live longer than I would with no treatment. If a cure doesn’t happen, I may live into another period of advances in treatment.
Still absorbing. I’ve passed the shock of omg I’ve got cancer again! I’ve passed through struggles over imaging. Now, I have data. Two negative imaging studies and a PSA of high velocity, 3.01 in the last test. I prefer knowing what’s going on.
I’m in a different location now. A treatment plan in place. (see post below) Within that decision was a secondary but important choice. To go after the cancer aggressively. The addition of the lupron reflects that choice.
Sometime next week I’ll get calls from a nurse practitioner who administers and manages the lupron injections. She’ll give me more information about what to expect, what to do. In my instance I’ll get injections every three months for up to two years.
Also next week I’ll get a call from the radiation therapy folks at Littleton Adventist. We’ll set up a schedule for my 35 sessions. They call this fractionation. My prescription is 70 Gy’s (a measure of radiation) spread out over 35 10-minute doses, fractions.
When you get into cancer treatment, the brutality of it, a therapeutic necessity for much of what’s on offer, presents its own set of problems. What doesn’t kill you may cure you, but not without a price. How high a price is different for each individual and unknown at this point for me as a result.
That does make the upcoming weeks and months more fraught. In addition to the question of how therapeutic the radiation and the Lupron are there is question of how severe their side effects will be. There’s a deep irony in this reality. What’s curing is hurting.
Am I concerned about all this? Yes. It gives the time ahead two different sorts of uncertainty. Wish it were as clean as my initial decision to get my prostate out of my body. That was straightforward. Surgery. Recovery. Done.
Not these treatments. Some side effects of the radiation may not manifest for years. Side effects of the Lupron will be more immediate.
So. Cancer treatment plan. After negative findings for bone lesions and metastases in the thorax-most excellent news-we’re left with the rising PSA as evidence of a cancer return. Since my PSA jumped from 1.3 to 3.01 in two months, this is a more aggressive bugger, but likely confined still to the prosate fossa (bed) where my prostate isn’t.
In my situation Gilroy has recommended 70 Gy’s of radiation over 35 sessions, 5 days a week for 7 weeks. This is a usual plan. He also recommended, due to the PSA jump, the addition of Lupron, a testosterone suppressing drug. Both can have significant side effects, but I’ll deal with those if and as they come.
I chose Littleton hospital as the site for my radiation because it’s a bit easier to access than Gilroy’s shop. Kate has had several imaging studies there and my bone scan and ct were there. I’ve been impressed with their professionalism and kindness.
Gonna get some books on cd. 35 round trips will get me through at least one or two.
No one knows what the future holds. Except for that one certainty. All this is an attempt to push the date of that certainty further away than doing nothing. I’m hopeful, cautiously optimistic.
I’m in a tough place. Tired out. Psychically weary. Physically weary. Workouts stalled due to schedules. Writing non-existent except for this blog. Habit. Of very long standing. No hiking. Watching a lot of TV, dulling the mind, the heart. On purpose.
Of course, as we enter the ninth month after Kate’s bleed, with all that has entailed, and considering flu and pneumonia for February and March, it’s not a surprise. Add the I’m Back! from prostate cancer, the imaging difficulties, the appointment today, and I’m pushed over the line sweet Jesus.
Symptoms: staring blankly, weariness, heaviness in the soul, irritability, lack of motivation. I don’t know what to do with my life, I said to Kate yesterday. Not sure what I meant, though it felt true at the time. In 2015, during the diagnostic runup to the prostate surgery, I talked about losing all sense of the future. My mind just wouldn’t go there. Not the, oh, I’m in the moment sort of thing, but a symptom of possible lost hope. This is probably the same. Cancer eats away not only at the body but at time, too. At our sense of ourselves as ongoing.
I have novels to edit. Ancientrails, the printed edition, to organize and edit. Paintings to paint. Grandkids to see. Domestic chores to get done. Colorado to see with Kate. Yes. All true. But right now I don’t have a sense of urgency with them, they don’t call to me. Sit down. Pen in hand. Start whacking out paragraphs. Or, stand up. The moon and the sun, the lesser light and the greater light. What colors should I use? What shape? Where should they go on the painting?
Will pass. May last through my treatment, however long that takes.
Kate’s still sleeping, taking in nutrients. The j-tube has some similarities to the tpn. It has a pump and a set of tubing to connect the pump to the j-tube port. No more bags though. No more syringes. No more batteries. No more heparin or saline flushes. No more pic line. The nutrient solution is called Jevity. I couldn’t figure it out, but Kate said, “Longevity.” Oh. I see.
The really big difference though is that the j-tube puts the nutrients into the digestive tract. This is safer, no more direct line to Kate’s heart for possible wee beasties, and also more sustainable over the long haul. With Sjogren’s dry mouth the j-tube might be permanent. Thanks, Dr. Ed.
In other local technology news the Rav4 has reached an inflection point in our lives. The AC either has a leak under the dashboard or a faulty evaporator. $900 to remove the dashboard and diagnosis it. If, as they suspect, it’s the evaporator, another $1,900 for the part. With labor somewhere in the three thousand dollar range. It’s a 2011, eight years old next month. As a rough trade-in it’s worth about $5,800. Too much to spend.
So. A new, or newer, car. We’ll keep the Rav4 since it’s in good mechanical shape. With the exception of the AC obvi. Worth more to us than it is as a trade-in. I didn’t get the y-chromosome negotiating gene. I hate it. Buying a new/er car is, grrrr.
Meeting with a friend’s husband this morning in Evergreen at the Muddy Buck. He has prostate cancer, too. A mini-support group, I guess. Then, at 1 pm I’ll get diagnosis, prognosis, and treatment plan. All prostate cancer, all day.
It seems we are all becoming wabi sabi humans. Or Velveteen rabbits. The same perhaps. Deepening the love for ourselves and others, wearing the roadmaps of our lives for others to see while we sort through the inner souvenirs, not so visible.
I agree. Third phase life, done well, could also be called the
Velveteen Rabbit phase. When we become real to ourselves. The cracks in
our lives mended with gold, their existence treasured. Even the
impermanence of life becomes beautiful, a frame for the whole. Our
imperfections, flaws, mistakes as crucial and necessary as our
achievements. We see that now.
Kate’s going to be in the hospital one more day. They want to be sure the j-tube is working, no leaks. A gastric function test today with contrast. Like making sure all the plumbing is in order after sealing the wall. Not sure what they’ll do if they find a leak.
Today it feels like I woke up in a Truman Show simulacrum, one focused on medicine, a Grey’s Anatomy in which Kate and I are a plot thread about medical issues affecting the geriatric demographic. Maybe I’ll drive out to Littleton Adventist this morning and someone there will tear a hole in the screen separating us from the cameras and crew.
Having Kate back in the hospital has flashed forward the bleed and its long aftermath, the second bleed, the pneumothorax. On the first day she’s gone my reaction is to be self-indulgent. Eat poorly and watch a lot of TV. Yesterday was hot dogs, ice cream and several sessions of Big Mouth, a Netflix cartoon about hormonal middle-schoolers. It’s surprisingly good, recommended by Ruth. Not sure why I have this reaction, marking her absence surely, but why self-indulgence?
I suppose those are denial strategies. Eat and forget. Watch and forget. Suppress. Repress. Good thing I have this bandage stripping habit. Wouldn’t want to get stuck. My inclination these days, these third phase days, is to be more forgiving of myself. As somebody said, if your compassion does not include yourself, you are not yet (something): fully compassionate, enlightened, realistic? Ah. Looked it up. It is incomplete.
Under the Cancer Moon I’ve wrestled with the news of cancer returning. Death and its meanings. At the Journal workshop I wrote in one exercise, death has found me. I still feel that way, that this is a mortality signal with little ambiguity.
Even so, I’m feeling upbeat, happy right now. Why? CT scan showed negative for metastases. So did the bone scan. That means the reemergence has happened in the prostate fossa. Localized. An easier place to treat.
Death may in fact have found me, but prostate cancer may not be its agent. The word cure comes back into the vocabulary with these findings. If the radiation is successful, I’ll be a 72 year old guy with no cancer. Wow.
Peaceful this a.m. The imaging work is done. At least for now. Three days now with no medical interventions or doctor appointments. And sunny blue skies.
On Monday at we leave Shadow Mountain around 5:30 am to get Kate over to Littleton Adventist for her j-tube placement. She’ll be there over night. Since she’s stronger now, we’re not anticipating any major issues. This is laparoscopic surgery so the recovery should be minimal.
We got the first j-tube feeding accessories in the delivery yesterday from Option Care. Jumbo size plastic syringes for flushing. The j-tube will be a major change from the tpn. No more aspectic procedures. No more bag to carry. Not nearly as much risk of infection. And a consistent source of nutrition.
It’s been this kind of May. And it looks as if June will be cooler and wet, too, according to Weather5280. Good news for us, not so much for those lower down when the huge snowpack starts to melt.
Got further along on print Ancientrails. Am now in late 2017, quite a ways in. Then, print spool error. Again. Well. Gotta go back to whatever I did that solved it once. Tried so many things I’m not sure which one worked. Something did. For a while. Soon though. Then, I’ll take everything for three hole punching and decide what kind of binders I’m going to buy. Each folder with month tabs.
Also figured a way to unzip Superior Wolf and focus on Lycaon’s story. Don’t know whether I’ll follow up later on Christopher and Diana. The hunt for immortality is almost a cliche these days. And the central conceit of their story, a hedgefund group that funds Diana’s research, is not fiction anymore. Geez.
That means I’ve got months of work ahead, maybe years. My ikigai. A Japanese word that means reason to live. This article talks about ikigai in more depth as an explanation for Japanese longevity. Squares with my own intuition. Purpose keeps you alive and flourishing.
The Japanese have a lot about life figured out. Ichi-go, ichi-e is another favorite of mine. It comes from the Japanese tea ceremony and means each moment is once in a lifetime. No such thing as an insignificant experience with another person.
Reading a book right now by the wonderful travel writer, Pico Iyer: Autumn Light, Season of Fire and Farewells. It’s a follow-up to his The Lady and the Monk, which I have not read, in which he recounts meeting Hiroko, the Japanese woman who would become his wife. He had moved to Kyoto to immerse himself in Japanese culture, sensing, as I do, that their approach to life is worth learning, perhaps adopting. Twenty-three years later he lives in Japan with Hiroko six months out of the year and six months in the U.S., caring for his mother and working for the New York Times. Recommended.
Each time I dip into some aspect of Japanese culture I find I want to know more. The MIA’s Japanese collection gave me a chance to interact with tea bowls, tatami mats, sumi-e, Buddhist and Shinto sculpture, put me deeper into my own Asian pivot.
Zen itself has not intrigued me, but I did follow Zen back to its roots in Chinese Chan Buddhism, a melding of Taoism and Buddhism. The Taoist aspect of Zen, and Chan. Yes.
Tomorrow. The CT scan. Probably the last of the imaging work. It will either show metastatic disease or a localized recurrence in the prostate fossa. If the former, one kind of treatment. And, prognosis. If the latter, 35 days of radiation and a possible cure. Hopeful, of course, that it will be localized, but aware that it might not be. In either case I’ll know. That’s been the hardest part of this time (well, no, that’s not right. The hardest part has been dealing with insurance and the hospital’s “benefits” office.), knowing the cancer has reasserted itself, but not knowing what that means for my life.
Will be glad to have this work done so I can move onto what’s next.