Category Archives: Cancer

Infused

Shadow has gone away. No tail wagging, eager morning greeting. No one guarding the door. An aloneness I don’t often feel.

The staff has now seen the protocols for aprés the infusion. Three feet away. An intrusion on their youth, cancer treatment. Crystal, one of my favorite caregivers, brought me garbage bags for my waste over the next the next three days. When she left, she said, “Good luck with your treatment today.” My heart blossomed.

Jenny will pick me up at 9 for the 10:30 infusion. I’m at peace with where I am in my life, on my cancer journey. Pluvicto lies near the end. After it, so far there’s nothing but chemo. Which I may not be strong enough for even if I chose to do it.

A point in time laid out when my biopsy came back malignant. May, 2015. A plethora: surgery, radiation, medication, now radioligand treatment. No lack of medical interventions. I’m alive, eleven and a half years later. Grateful.

 

10/29 And so, the first infusion has ended. No side effects.

Therese, the theranostic* nurse I met during my first infusion-actinium-is pregnant with a due date of November 25th. A Thanksgiving adjacent baby. Surprised me. The sight of her working around radioactive material while obviously pregnant jarred me. So I asked.

“I have a dosimeter and so does my baby.” She touched the one hanging near her waist. “Also, the medical physicist** watches me each day.” I knew it was safe because Therese is a bright, no nonsense professional. Still.

Laura, the other nurse, tried unsuccessfully to start an iv in my very best vein. Ouch. She switched to my hand. Worked. A bit later she opened the lead box containing my first dose of Pluvicto***. Some saline. Then. As Stephen Bernstein once said, “The good stuff.”

They let me rest a moment. “When you can use the bathroom, we can get out you of here.” Ah. After following my hydration protocols, I was ready.

The bathroom has a touch of weirdness. The toilet, all burnished metal, looked less like a toilet and more like a Marcel du Champ found object. It gleamed. When I mentioned it to Therese, she said, “Oh, you liked our prison toilet?” Ah.

She had me standup and held up a device measuring my level of radioactivity. “4. Too high. Rest a bit.” I finally hit 2.2, the upper limit at which they let me go back into the wild.

Back at Elk Run Michelle, head of medical services, saw me. Asked if I was hungry. Yes. I’ll have lunch brought up.

Caregivers greeted me, asked me how it went. Lizzy of the pink highlights brought my lunch, setting it on a stand near the door. I received several texts and emails.

I ate lunch and took a nap.

 

 

*Theranostics is a precision medicine approach that combines diagnostics (finding and imaging disease) and therapeutics (treating disease) using a matched pair of targeted molecules. [1, 2]

**Radiation Therapy (Oncology): Design, calibrate, and test linear accelerators, calculate patient radiation dosages, and create safe treatment plans alongside radiation oncologists. [1, 2, 3]

***Pluvicto (generic name: lutetium Lu 177 vipivotide tetraxetan) is a targeted radiopharmaceutical therapy used to treat adult patients with prostate-specific membrane antigen (PSMA)-positive metastatic castration-resistant prostate cancer (mCRPC). It belongs to a class of precision medicine called radioligand therapy (RLT).

Deep to Deep

A good weekend. Rich on Saturday morning. Ruth Sunday afternoon.

A rainy, cold night here in Evergreen. Mid-30s.

Watched the whole United States Grand Prix. Circuit of the Americas in Austin. Kimi Antonelli, a 20 year old Italian driving for Mercedes, won the race. He will probably take the driver’s championship at the next race in Mexico City, making him the youngest ever to capture it.

Pluvicto on Wednesday. The next five days I have to drink 68 ounces of water per day. Ensures the gamma radiation gets flushed out of my kidneys and bladder. Otherwise it can damage me, possibly creating new cancers.

Ruth’s visit was wonderful as always. She’s in mid-terms right now, holding all A’s with one A-. She loves organic chemistry and the path she’s on. I’m excited for her.

She and I can talk deep to deep. A rare gift. Last night we talked about death. Mine. How cancer can take a sudden turn down. Told her I planned to use Mt. Evan’s hospice when that time comes. I’ll stay right here at Elk Run.

She said I’d be the first person she knows to die naturally. The others she said were found. Her dad, found by her. Her grandfather, found hanging in his garage.

She will be with me all the way. As I have been with her. Family.

 

 

Not Yet

Spoke with my oncologist P.A., Christina. Gonna try one more treatment, Pluvicto. Another radioligand one, similar to actinium. Radioligand is “a specialized precision medicine molecule that combines a targeting compound (a ligand) with a radioactive isotope to locate and destroy cancer cells.” Gemini

Pluvicto, harsher than actinium, will require Shadow to be away from me for three days while I quarantine in my apartment. Radioactive. Six infusions, every six weeks. If the liver mets respond, my prognosis improves.

A long and winding road, cancer. Twelve years, almost. Colorado time and cancer time-the same. Weary from it. Not hopeless. Not despairing. But weary.

However. Three full meals a day. A kind and caring staff. Good friends. Family. No more grounds or house to care for. Someday long term care insurance paying my tab. Stress reduced. Life enhanced.

I’ll do what I can. My own life wants that. However. It does not want pain. Or fear. So there may come a point when continuing to live becomes unbearable. Not yet.

 

A Fork in the Road

So. New PETscan shows liver metastases. Not a good result. A next treatment-whatever it might be-will determine a lot. Discussing that with oncologist today. A little shaken though not surprised. This might bring death closer. If so, so be it.

I’ve been wrestling with cancer and its treatments since May of 2015. Up and down. Down and back up. Grim findings began when my PSA jumped in 2016. A few months after clear margins from my prostatectomy. From cured to not cured.

I focus on today. On what I can do. What’s within my power. My agency. Most of the time. But. On occasion a future possibility becomes a present certainty. Like death from a damaged liver. Felt real after I read the petscan results.  My inside opened up, an emptiness below. Then. Maybe, maybe not. But not today. I came back to Shadow, to breakfast. To Ancientrails.

I made this move to Elk Run at the right moment. If I am going to get sicker, room 308 is far better than Shadow Mountain. It’s also better for the time when I’m not sicker. Less stress, more day-to-day joy.

Another branch of my Ancientrail.

The Dark

A bit of a kerfuffle right now over Shadow. Nashay, the caregiver who described the dangers of the dark-bears, racoons, rabid foxes-with such quavery passion refused to take Shadow out. l protested. She said nobody would take her out. Devolved into her “calling her supervisor.” Who has not showed up. Gonna be a bigger issue as we move toward Samain, then the Winter Solstice.

Telehealth call has me a little anxious. How far has my cancer advanced? Could be minimal; could be a lot. Affects my longevity.

Lunch with Ginny and Janice and two of their friends from Milwaukee. One of them, Janice’s former student at the University of Illinois at Champagne-Urbana, has become a well-known costume designer. Looking forward to it.

Feeling a little down today. Nashay, whom I dislike. The only staff person here I don’t like. Since she’s my assigned caregiver on certain nights… Then, come to Jesus time about cancer. As well as selling my house and still in the midst of unpacking, settling in.  A lot. Glad I’m talking to Tom today and having lunch out.

 

Cancer

Got up late yesterday.

Had a visit from my palliative care nurse sub, Claire. She brought along a nurse practitioner transitioning to palliative  care from the ICU.

Bless their pea-picking bureaucratic hearts the folks at Optum believe I’m doing so well I don’t need palliative care. Peculiar since I still have stage 4 metastatic prostate cancer. It’s not going away. Complimenting me while denying me benefits. Bad insurance company. Take a time out.

The nurse practitioner gave me a new formula for recovery from a hospitalization: a week for each day. Even discounting rehab a bit because I did get out of bed some, that formula suggest months of recovery. In addition she and Claire corroborated that recovery from the pneumonia itself takes months.

These comments were meant to reassure me that I was still on the upward arc of recovery. I appreciated them. I tend to focus on what’s still troublesome-weak legs, wonky balance-and forget where this journey started.

Had my petscan. It will tell the tale about my cancer status. Telehealth visit with Christina tomorrow  for the results.

Elk Run: Week 2

Shadow got to play with Annie yesterday morning. Ginny came to pick her up. When she got home around 1 pm, she laid down and went to sleep.

Took two naps yesterday. A sleepy Sunday. Tried to watch a football game, but the buffering stopped that. When I went in for my second nap.

Got started on documents necessary to list my house. Colorado likes forms, lots of them. I’ll be on that today as well. The house sits empty, deep clean today, painting tomorrow. Staging follows. Showings. Then a contract. May it be soon.

With the house ready to go on the market and my Long Term Care claim underway, I’m moving closer to eliminating the two most complex issues I have right now. Well, cancer, too.

Pet scan this week, Wednesday, telehealth with Christina about  it on Friday. See where things are now. Decide on next steps.

A lot of change since July 1st. Here’s yet another shout out to Mary, Joseph, Melissa, Tom, Ginny and Janice and everyone else who has supported me. I’ve needed every bit of support.

Tasks and Perennial Questions

Organized money for the roof. Signing contract today. Work starts this week. Peak Window cleaning comes tomorrow AM. Getting the place in shape for listing this month.

Each day this month has tasks related to the Elk Run move. Yesterday and Friday address changes in addition to arranging the roof and the window cleaners.  Colorado DMV. Social Security/Medicare. Voter Registration. Fussy, often frustrating but so much easier online. Can you imagine doing this by snail mail or telephone?

More address changes and a first in a long time trip up to the loft today. Checking on the status of book pulling for volumes going to Elk Run.

 

Friday’s visit to the oncologist has me pondering existential questions. Death. Decline. Living fully. Where is my flourishing?

Philosophers talk about permanent questions. So do conservatives. “In philosophy and ethics, permanent questions (often called perennial questions) are the fundamental mysteries of human existence that never go away.” Gemini

These questions loom large during major transitions like moving to Elk Run. Getting a tough diagnosis. Death of a loved one.

Or when you enter your eighties. Charmingly known among some as the decade of death. Will be on my mind.

I miss talking with Mary over an early a.m. cup of coffee. She’s back in hot, humid Southeast Asia. In a week or so she’ll travel back to Melbourne where spring is springing.

 

And you’re out

Time for a Shadow report. Woke up last night and noticed that Shadow was up and, I thought, looking out the window. When I turned my head further I could see she was looking at me. Felt as if I’d intruded on a private moment.

Back to sleep. As I began to rouse for getting up I touched something. A paw. Shadow slept with her body tight against my pillow, her left hind leg splayed out upon it.

 

Back from then oncologist. I’m out of the trial. Too much time elapsed between today and my first (only) infusion of actinium. The irony. I went in six weeks or so ago, expecting to get my second infusion. My hemoglobin was too low at 9.5. Needed to be 10. Two weeks later I would have gone in for another potential infusion. Instead I spent 27 days getting over pneumonia. By then too much time had elapsed.

I’ll probably start on pluvicto sometime in the next month or so. It is similar to actinium but requires 72 hours of no human contact after an infusion.

Alan, a good friend, took me to the clinic.

 

 

Wrong Direction

Petscan results: significant disease progression. After my first actinium dose in April. Wrong direction. Not sure where this leaves me. Actinium has an excellent record of killing cancer cells. Why I’m in the trial. Not in this body.

Disappointing. More when I know more.