Kate’s stamina has improved so much. Thursday. Mussar in the afternoon and a board meeting in the evening. Last night we went to the Gospel Shabbat. The Beth Evergreen singers, supplemented by members of the Evergreen Chorale, were led by Val, a committed choir director with a lot of energy, plus a fine pianist added to the CBE band.
It was high, good energy and Kate stayed the whole time, including for a bit of the oneg. (oneg is snacks and goodies provided after a service.) Her hip bothered her a bit, but she walked and stood, clapped and sang. A real simcha.
Rabbi Jamie came by yesterday around lunch time to see how I was doing. We fed him chicken pot pie (mine) and watermelon, then he and I retired to my loft. He’s a good guy. A dog person. His first dog was a wolf hybrid, 105 pounds, that lived an astonishing 18 years.
He lost a dog recently to a porcupine. Awful way to die. But natural. We agreed it was a good death, both animals doing what evolution had taught them.
Tomorrow, for father’s day, Jon, Ruth, Gabe, Kate and I are going, at my request, to Biker Jim’s Gourmet Dogs. No less a foody than Anthony Bourdain recommended Biker Jim’s. Apparently he soaks his onions in Coca-Cola. After Biker Jim’s hot dogs will become a special occasion treat for me, no longer in my diet. Other processed meats, too. Gonna miss’em.
Each day now I’m privileging exercise over other activities. I usually get in at least two, aiming for three resistance sessions a week. Three now for sure. On the other days I do cardio, planning to start back on my interval training tomorrow. I want to get out and hike, but somehow haven’t. Just the press of things, I think.
Also, beginning Monday we’re going to focus on more healthy eating. Our diet’s not bad, but it could be better. Less red meat, more chicken, fish, pork. More vegetables and fruit. Importantly for the radiation, too, avoiding foods that cause gas. Why? Because of bubbles in the rectum. Geez, how silly that sounds. But it screws up the location of things in my gut. Bad for aiming the beam.
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.
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.
I’m stage III
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.
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.
April, 2018. Happy Camper
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.
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?
Tom Crane’s guy.
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.
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.
Sekkyakushi, 15th century, Muromachi period, Metropolitan Museum of art
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.
The Anova Cancer Care office has an entrance opening onto an asphalt parking lot. It’s in the corner of a large commercial building and looks like all the other non-medical companies in the structure. Glass, aluminum, tan colored stone facades.
The waiting room has a small refrigerator with soda and bottled water, snacks, and a round table with Prostate Cancer books arranged neatly on it. Carmela, the receptionist, who knows everyone’s name, asks about Irish Wolfhounds. I have on my Great Lakes Irish Wolfhounds sweat shirt.
They’re the largest dogs, right? The tallest, yes. But not the heaviest. We had a lot of them. Do they eat a lot? No, not as much as you’d think. Carmela has gray hair, but looks to be in her early fifties. She’s wearing an unusual layered frilly top. She apologizes. This is considered an office visit so I’ll have to collect a co-pay. Of course.
Then we wait. Kate’s reading a Parker book, a mystery of sorts. I’m reading Pico Iyer’s book about living in Japan, Autumn Light.
Charles. It’s good Amanda. Go to your left, please. I turn to my right even though I heard her. Oops. A bit distracted, I guess. After all, I’m going to hear the results of the bone scan which is one component of the imaging work. Do I have metastases in the bone?
Dr. Gilroy, who likes shirts with plaid patterns, comes in. I’d noticed a scan image on his computer when I entered the room, wondering if that was my insides.
Well, the bone scan was clean as a whistle. No mets. I want to jump up and down, but I say, thank you. Following with, the CT has been approved.
Dr. Gilroy. The auths. We can order, but the insurance company. Well. He shakes his head. Frustrated. The authorizations part of our tangled web of a health care system disappoints all parties. The only exception? The small groups of office workers who enforce them and the companies that profit from denials.
I’ve prepared a folder filled with documents about how to mount an axumin scan appeal, ready to go toe to toe with New West authorizations. I think we can make this happen if we need to. Dr. Gilroy shakes his head.
Let’s wait. If the CT scan is negative, then we’ll know it’s a localized recurrence. If the CT shows a lymph node really lit up, we’ll know that’s a target. Only if the CT is indeterminate will we consider the axumin scan. It’s easier for us, because it’s one scan and done. I put the file back in my lap.
Later on a call from Centura Health and my CT goes on the calendar for May 30th, next Thursday. Gilroy’s out of town, but will be checking in. If, he says, the scan is negative, we’ll schedule another office visit to discuss radiation for the prostate fossa, the spot where that corrupted organ used to lie. He surprises me when he says, That’ll mean 35 visits here. Not the Cyber Knife, 3-5 visits. 35 sessions is the usual radiation protocol. My friend Dick Rice had it. Our house cleaner, Sandy, had it.
In three days it will be 8 months since Kate’s bleed. They’ve been difficult. With Kate’s feeding tube placement scheduled for June 3rd and my second, probably last, imaging work next Thursday, we may be emerging from the trenches.
Kate’s already back to some level of normalcy. Walking more, loading and unloading the dishwasher, cleaning up after I cook. In the most hopeful scenario for me, Dr. Gilroy’s talking cure. Maybe sometime this summer we can take a pause from medical interventions. Would be nice.
