Lucky number 7. 28 fractions as of yesterday. 29 today. Weary and distracted, but I can feel a positive energy eager to emerge when the radiation finishes. Will not miss the daily trips to Lone Tree. Nothing from the Lupron except some mood changes. Hoping I’ll stay that way.
Kate’s having some tough times right now. Gupta, the pulmonologist, who seems knowledgeable but disorganized, has not give her a diagnosis, prognosis, or a plan. She started seeing him in January. The lung disease is the last piece of the long march and his foot dragging has caused her anxiety.
Kate’s mom had a lung disease, died from it. She says, “I’m becoming my mom.” No, I said. You may share some physical issues, but you are definitely not becoming your mom.
Her body has been giving her trouble for over two years. That’s a long time to deal with a cranky gut, weight loss, Sjogren’s, debilitating bleeds. Stress has built up and has so many triggers for her that it’s hard for her to achieve inner peace. Illness spreads out to the mind, to the family, to the community. Few are ill alone.
Kate went along yesterday on my Lone Tree trek. She saw me get on the table. Kim and Nicky bound my feet and knees, put a pillow under my knees, and handed me the donut. Kate left and it was the cyber knife, John Prine, and me.
One guy, talking to Kim, said, “I drank a quart of water before I left home.” We exchanged glances, amused at what we have to do to get ready. We want to do well, get that bladder at 100 ml or above. It’s magical thinking to some degree. If we help as much as we can, the therapists will make sure we get the best from them. And, here’s the magical part, we’ll kill all the cancer cells together.
I’m struck by how much like a sacrifice these radiation treatments are. I get ushered into the holy of holies where resides the god of radiation. To get his favor I lie down on clean sheets, the priestesses make sure I’m in the correct ritual position. They leave the room, the encounter between god and sacrifice being a sacred act dangerous to others. I lie still and let the photon’s stream into me, hoping the god will grant me a miracle.
With 12 more fractions to go I’m at the two-thirds point. Blessedly, I have found a combination of meds that keep my stomach more or less calm and my bowels steadier. I feel better and that makes the whole experience less fraught.
Got our first meal delivered last night. Lasagna from Marilyn. Yummy. A real relief to get help. We both are grateful.
This ancientrail of disease, treatment, and healing continues.
Week two began with the Grateful Dead. Sugar Magnolia, then Fire on the Mountain. Today, the Doors. Gonna ask Nicky today what’s most requested. My bet is country.
Finding my rhythm with the bladder. Came in around 280 ml yesterday. Goal is 100, but anything above 100 is ok. Cool, clear water. A western thing, now a radiation thing. Tumbler of water in the cup holder, I drink it on the drive. The Water Flow Way, I suppose.
Haven’t yet figured out the trick with audio books and my phone. Gonna go to the library on Wednesday after breakfast with Alan. I’m sure they can tell me.
Ruth stayed up Sunday night. She’s still here and now Gabe is, too. Gabe wants to hunt for antlers and I’m going to salt the backyard with an antler I bought in South Dakota years ago. I think he’ll enjoy finding one.
Jon picks them up around 4:30. Mary, sister Mary, flies into Denver around 7: 20 pm. Pick her up at the RTD stop at the Federal Center in Lakewood around 10. She’s on a visit back, hitting Minnesota, Wisconsin, Colorado, and Indiana. My peripatetic sibs. Mark’s in Bangkok. Me? You can see my glow at night if you fly over the Front Range from DIA.
Kate cooked the meal last night. ! Her stamina is so much improved. We did drive all the way into Swedish Hospital for yet another imaging study yesterday. Not approved by Medicare. Drive back. Not sure what’s going on here. Kate sees Gupta tomorrow while I’m under the photon beam. He ordered the test.
Move to Colorado. Visit many different hospitals, medical clinics, specialists, imaging locations. It’ll be fun!
Because of my midday treatment schedule, I had to get my workout in early. Often, if I felt a need to do that, I’d shrug when it came time. Do it tomorrow, I’d think. Sometimes I’d do it then. More often, I’d let it go.
Did it. I’ll keep it up; I’m sure. That’s three days a week, the resistance workout with a bit of cardio. The other three days are cardio. I’ve started back on the high intensity, interval workouts I used to do. Gradually. Gonna keep my muscle mass, my fitness level as best I can. Does wonders, too, for the psyche.
Had to leave early for Lone Tree due to Kate’s 11:30 annual physical. Drinking water the whole way there. Part of the protocol. Also, soup Sunday night for supper. Lighter proportions on the meals. Protocol. Reducing gas. That’s the goal.
Dropped Kate off at Lisa’s office, County Line Road to Broadway and Broadway back to 470. Still pretty early for my 12:20 appointment, so I drove around, trying to get familiar with the navigation screen on our new car. Slow progress there. RTFM, I know. But I’m a do this and see what it does sorta guy at heart.
Time to stop driving around listening to the computer voice. Over to Anova. While I sat in the waiting room, men of a certain age in sweat pants came and went. One guy, tall, gray headed like all but one of us, had on blue sweats with pink stripes. Keith had on jeans. I didn’t want’em to cut on me. You know. No, I didn’t, but I nodded anyhow. He’d made his decision.
Ultra sound of the bladder. That’s always first. Lie down on an exam table. Patty put a little gel on my tummy. Wand. Hmm. 200 ml. We want you at 100. Take this cup. Fill it to here. Then, to here. Not so easy, but I managed.
Take a seat out here. OK.
Come on back. OK. A room with computer monitors, narrow, more like a hall way. Desk chairs. New woman, about Patty’s age, maybe a bit younger. Early thirties. Attractive, like Patty. Attractive younger women to manage old men. Makes sense.
New woman, I didn’t get her name. I will today. We’re right here the whole time. If you need us, just yell and we’ll be right there. I couldn’t imagine what I’d need them for, but it was nice to know.
What music would you like? We have Pandora. The Band. Do you know them? She pulled up The Band’s Pandora page. No, I don’t think so. Wait. Yes. My grandpa told me about them. Oh. I see.
Patty and new woman both liked my radiation hazard t-shirt. No reason to be glum, eh?
Down to it. A metal table. My spot. Cyber Knife to my right. Two oblong, speaker like things hung on the ceiling on either side of the table. Above me a circle, big, filled with nice wood, lights all around the rim.
Patty and the new woman began positioning me on the table. A pillow under my knees. A red laser line up my midsection. We’ll be back. If we come into to reposition you, we don’t want help. Just let us do it. OK.
A few tugs and pulls later. The table began to shift up, down, sideways. Huh. The table’s an important instrument in this case. This whole 3-D guided radiation treatment requires precision at an exquisite level. Don’t want to burn the bladder or the rectum. Do what you must, Patty.
The music starts up. Patty says something through the loud speakers, but with The Band playing “The Weight” and my poor hearing I just say, ok.
Cyber Knife comes to life. In motion it reminds me most of the industrial robots I’ve seen at work in automobile manufacturing. It’s movements have that slightly jerky but intentional way about them. The one the kids use for robot dance moves. Metallic sounds. Gears grinding. Not loud, but audible.
The pointy end, the lens that aims the radiation moves around me. Stopping. Moving again. Up high. To the side. Below the table aiming up. All the while the large head of the Cyber Knife looms over me. Defenseless. What if it goes all Skynet on me? Gotta say, it was creepy.
All this to a favorite song, “The Night They Drove Old Dixie Down.” The weirdness level was very high. My sixties past brought into my 2019 present, a robot aiming death-dealing rays into my body. To protect me. Very, very weird.
Took around ten minutes. See you tomorrow. Thanks.
I’ll write about the rest of the day in the next post.
Father’s Day. A Hallmark holiday. Yes. A secondary holiday to Mother’s Day. For most, yes. Yet still powerful. Powerful enough to generate happy moments. Guilty moments. Moments of regret.
Not an easy day for me relative to my Dad. With Jon and Joseph, it’s wonderful. And when I extend the idea to grandfather, it becomes sublime. Why? They will live on, into the hot and dusty future, carrying the life of our family, its values. In a straight line? No. But that’s as it should be.
Not sure how often I’ve written about my father here. Let me say this. He was a man loved by many. In our small town of Alexandria most knew him and liked him. He walked its streets long after retirement, holding onto a small role for the Times-Tribune as its circulation manager. Oddly, a role I held for one year or two during high school.
I am his son. I write. I have strong opinions. I’m not afraid to express them and will not back down from a public fight. I’m curious about life’s strangeness, its uniqueness. After retiring, Dad would drive the roads of Indiana with his second wife Rosemary, looking for the river that suddenly disappeared into the earth or a small town with an unusual claim to fame. Like the giant paint ball in Alexandria.
I am not his son. I vowed to never let anything come between my children and me. Anything. Not choosing the military as a profession. Not repeated self-injury and a sometimes violent temper. Nothing will break my bond with them. Ever.
Yesterday we went to Biker Jim’s Gourmet Hot Dogs. I had the day wrong in my last post. Underwhelmed by the coca-cola drenched onions. My German veal hot dog was, meh. The fries, too. The chocolate shake, yumm.
I’m not giving up. There were many other choices and I chose the original, just to see what it was like. Jon said he’d bought hot dogs from Biker Jim’s food cart before he transitioned to the restaurant. I’m not giving up because from now on hot dogs, bacon, salami, pastrami and the like are now off my grocery list permanently. Carne vale. Farewell to meat. Processed meat, that is.
Ruth introduced me to, wait for it, fried macaroni. Oh boy. This is state fair worthy. Shoulda been on a stick. She had a Jack-a-lope hot dog, cherries and jalapenos. Very good, she said. Jon got the classic hot dog. Not sure about Gabe. Kate’s stomach was in its delicate mode, as it often is, so she had a chocolate milkshake.
Gabe gave Jon a coffee cup that holds a half-gallon. It says, I’ll just have one cup. That Gabe. Ruth got him a thermos with super powers. Jon’s done well with them. Their relationships, all of them, are much healthier now than a year ago. Their affection for each other is obvious and touching.
Jon and Gabe made me cards. I’ll take a photograph of them, but they’re downstairs right now.
This is my last weekend before radiation and Lupron change me. Strange to consider, but true. Though life affirming in their essence, both will alter me substantially. Radiation has the potential for long-term bladder and bowel damage. Lupron has the potential for, well, lots of stuff, but it is meant to be temporary. It’s easy to get focused on the side effects and forgot the non-side effect: kill the cancer cells.
Lupron cuts off prostate cancer’s prime energy source: testosterone. Radiation damages cancer cell DNA. Lupron is systemic so it affects every part of the body. Radiation is localized and the more localized the better. However. If too localized, it chances missing cancer cells that, if they survive, will begin replicating again and cause a reemergence.
There is a fascinating book by Faiz Khan, The Physics of Radiation Therapy, which describes in great detail how radiation therapy works. Khan is a professor emeritus of the University of Minnesota School of Medicine. His book is the practical manual for radiation oncologists, medical physicists, and dosists.
After having scanned some of the chapters, I have an appreciation for the difficulties and nuances involved in planning and executing my therapy. Without getting technical let me say, it’s really f…ng hard. Glad to have folks experienced in the 3-D version. They need (and have) both a high degree of knowledge and the leavening of that knowledge with experience.
This father, after this father’s day, will be irradiated. Weird. And, in a peculiar way, wonderful.
Made a decision about the commute for radiation. Gonna go home through Deer Creek Canyon. Use the Canyon for its consolation. I did that today after picking up another O2 concentrator for Kate.
The sky was blue with cumulus clouds rising high above the mountains. Deer Creek ran fast down the canyon, fed by the now melting snow, late and in large volume. The rocky sides of the mountains, sometimes square, sometimes fragmented, sometimes rising in sheer cliffs sported lodgepole pines on either side of the road.
Looked up at the clouds. Then to the mountains, the rock, their height, lifting on either side of the canyon created by the running water, Deer Creek. Oh. We look at the mountains and we see permanence, stolidity. Mass unmovable and unmoved. We look at the clouds and we think evanescence, temporary. Gone as the heat rises or as the night cools.
But. We’re wrong. The clouds are only a visual manifestation of the water that is of this earth. It moves in cycles. Down the creek. Filling reservoirs and lakes. It evaporates and rises until, chilled by the cooler altitudes, it forms clouds. The temporary appearance of the clouds is an illusion, a trick of what Alfred North Whitehead would call a fallacy of misplaced concreteness. We see them as objects isolated against the blue sky. They’re not. They’re a particular manifestation of the water cycle and their essence, water itself, is not lost when the clouds disappear.
The mountain’s permanence is, as I’ve written here before, also an illusion. The snowmelt now feeding mountain streams all over the state takes a swipe, a soft swipe at the rock, dislodging particles created by the freeze and thaw cycles of winter. The lodgepole pines, scenic, supported by these rock behemoths, dig in, too, their roots spreading in crevices, forcing pebbles and small rocks to roll down hill. These are young mountains, these Rockies. Some day they will be rolling hills like the Appalachians.
Then, of course, there is the day itself. In this case warm, even hot. But the heat will flee the setting of the sun. Yes, the earth will continue to radiate heat, but not as much, when the sun sets. And the season, leaves coming, flowers blooming, deer fawns and elk calves following more mature animals, will get hotter and hotter. The fawns and calves will grow. The leaves will die back. Cold will come again. Another cycle.
I look at my hands on the steering wheel. These are old man’s hands. Wrinkled, blue veined, knuckles a bit swollen. My life is another cycle. I’m not permanent. Neither is the mountain. Neither are those fawns and calves.
This is maya. We see the cloud and think of its short existence. We see the mountain and think of its long existence. We feel the warmth of the day and imagine each day just like this one. No. The Great Wheel turns. It’s turning reminds us of the impermanence of all things.
Paradoxically though all things are permanent, too. They may change organization as entropy, the change agent of this universe, works its destructive powers, yet becomes the unwitting supplier of parts for the next mountain, the next human, the next cloud.
Slight change in my plans. Got to thinking over the weekend about radiation. I mean, who wouldn’t, right? Littleton Adventist versus Anova Cancer Care. Anova is Dr. Gilroy’s shop. I like Littleton because I liked the imaging folks there, both Kate and me had good experiences there. It’s also closer to home, though not by a huge amount.
But. Their radiation folks do a lot of breast cancer. I know that from the two dedicated parking slots for breast cancer patients. They probably do a lot of other kinds of cancer, too. All good. Yes. However. Anova does mostly prostate cancer. Got to thinking about those radiation beams, the possibility of the radiation impacting my bowels, my bladder, my kidneys. It’s a tight space and aiming the beam will have a lot to do both with the main goal, kill, kill, kill, as well as with the likelihood of side effects now and later.
Went on followmyhealth (a website Anova shares with New West Physicians, my primary care folk). E-mail. Hey, Dr. Gilroy. Decided I’d rather do my radiation in your shop.
Weird choices, where to do radiation. Where to get my Lupron shot. They are though both up front and center. Right now.
Out of the house at 5:35 this morning. Headed for the j-tube placement. This procedure had reached almost mythic status. It was said to exist. Some where. And it was said that some could find it if only they searched diligently among many, many medical offices. In one of those offices the one who would say yes, it not only exists, but we will do one for you, surely dwelled.
And lo, finally, on this day, in a land to our south, Littleton, suburb of the city Denver, this fabled one, named Edwin Smith, took matters into his own hands and did in fact do the surgery. As we expected, it went well. None of the demons claimed to bar entrance manifested. Her lungs did well. Her weight and overall stamina proved more than adequate. No barriers from previous surgery like mesh and transflaps, no stomach adhesions. All was well.
She’ll come home tomorrow. Not sure when we actually begin the feeding using the j-tube. There is some weaning off the tpn apparently. But soon. Later, when this whole process has calmed down, we’ll head back to Gupta and the issue of lung disease. Diagnosis and treatment of that will end this no good horrible 8 months.
Just where we’ll be after that we can’t know, but a calmer, more stable place we both hope. Of course, there is the issue of my cancer and its treatment, too. We’ll know more about that after Friday.
Yesterday was Miss Ruth again. I can help with that. And, she does. A bag full of pruned Russia Sage by the garage door. The dogs fed. Pancakes for breakfast. Plucking the chicken off the carcass for the leek and chicken pot pies. Pitting a quart of cherries and baking them into a pie.
How did you get interested in baking? I read a Jodi Picoult book about a baker. After that, I just wanted to bake. Ruth’s the sort of reader I understand well. She reads and wants to inhabit the world she’s conjured in her mind through the words. She’s building multiple places she can go, people she can be, things she can do. It’s the trick to a versatile and imaginative life.
Kate. Ruth’s learned at an early age how to stop doing something if she’s frustrated. And, she has. When she comes back to it, she’s ready to go again. When you consider the trauma she’s been through over the last three or four years (and the conflict in Jon and Jen’s marriage even before that), she’s adapted and learned from it.
I forgot to tell her yesterday, but I admire her willingness, eagerness to learn, to help, to get in to something new and stay with it until she gets it. She does this with academics, sewing, art, friends, grandparents, dogs, food, life. Unless I’m missing something big, she’s gonna do/is doing fine.
Ruth remembers who taught her something. And thanks them. She has gratitude at her base. All she needs to thrive, really.