Category Archives: Health

Day 2.5

Day 2.5 of three. Shabbat shalom.

Writing. Eating. Sleeping. Reading. Watching TV. Not a lot different from my usual days except: no Shadow. No leaving #308. People talk to me from the door. Meals show up three times a day. Also, much ice water. The nights have been cool enough for good sleeping. It’s been sunny. Not much of a burden-this radiation granted retreat.

What can’t be seen or felt. Tiny prostate cancer seeking nuclear warheads coursing through my bloodstream. I’ll not know their effectiveness until my next PET scan. Probably after the third infusion.

Shadow will return a week from today. She’s sleeping on a doggie bed at Camp Ginny and Janice. She shredded the first two I got her. Stopped buying beds. May try again.

I’m excited (and anxious) about Tuesday. May it be the beginning of the end. We’ve had barbarians in D.C. for way too long.

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.

 

 

Good

All right. Been down in the weeds for the last few posts. This fall, that fall. Fun with driving. A person might conclude life’s not going well for me. Not so.

I’m at Elk Run, where I need to be. Shadow sleeps beside my front door. I eat three meals a day. Starlink has given me the tv reception and laptop speed I wanted. Friends and family visit. I’ve got books, a laptop, drawing supplies.

My physical condition challenges me. Often, a lot. None of it, except the more frequent falls, is new. Dealing with cancer, head drop, deconditioning, recovering from my bout with pneumonia.

A mixed situation, yes. As are most of ours. We are not just one thing.

My boy turns 45 tomorrow. Yikes. Me old.

Hoping for  blue tsunami. Wash that guy right out of our hair.

No Fool Like An…

Talking with Paul Strickland. Both of us observing a paradoxical experience of growing old. Forgetting that who we are is not who we used to be. Especially physically.

A task may come up. Say, cleaning leaves out of a gutter. Perhaps moving a tree fallen on the hiking trail. Oh, sure. I can do that. Did it lots of time. I hope your inner old person speaks up. Right then. No ladders. No. Test your leverage with with the tree. Any twinges? Stop.

We both agreed. We check ourselves when those situations arise. Uh huh.

Take a for instance. Yesterday I had a blood draw. Nearby. Over on Stagecoach. Ruby was here awaiting finalization of a deal with Robin. A close by, ten minute appointment. Oh sure. I can do that.

I had decided a week ago that I could handle it. Don’t have to get a ride. Easy.

First obstacle. My cane and I headed outside and down the slope to the parking lot. Not level, like everything inside. Oh. Required careful balance. I managed it, got to Ruby, and let my attention wander from my feet to the car’s interior.

Still on a slope. Suddenly my left shoulder hit the blessedly soft grass and Mother Earth. Oh, sure. Done it lots of times. Took a while to get back on my feet, but I managed it.

Then. Should I go through with this? What if I fell on the asphalt. As you might imagine, I chose the obvious. Drove myself to the blood draw. Got in and out ok. Found a parking spot near Elk Run’s entrance, got out. Signed back in and flopped in a  lounge chair to regather my energy.

Last time I’ll drive. Went well under the speed limit, driving like an old person. I was not safe and neither were others. A poor choice.

Left the lobby and got back home. 308 is in his bed.

308 is on the floor

Yep. Fell. Again. Christian, my Filipino night caregiver, came. When he saw me, he radioed, “308 is on the floor.” And, indeed I was. Navigating around a too large ottoman (now in storage), my left leg wobbled, threw me off balance.

Crash. Whack. (head against wall) Ouch. Protocol here says no helping a fall victim up if they’ve hit their head. EMT’s have to do an assessment first. Means they have to be called. Takes time for them get here. Meanwhile, I’m lying in an uncomfortable position, scattered books and extension cords  serving as my mattress.

EMT guy, a kind man, led their team of three. Did you hit your head? Yes. He felt and looked at the back of my head. No blood, a little swelling. Do you feel any pain in your neck? Nope. All right. Let’s get you up.

Glad. Didn’t have a comfortable position. He got me in my chair and a guy took my blood pressure and O2 saturation. Both fine. The lead guy stepped in again and gave me an EKG. The EKG unit looked like a 1980’s boom box. Heart rhythms. Not disco.

When my heart beat showed up, regular and clean, he said, You’re a healthy guy. I’m going to call a doc and see if we can let you stay home. I sure hoped so. I’d been getting up to go to bed.

Slept in my own bed. Though. Falls. Too many. Something has to happen. Not sure what. At least more P.T.

Some Angle

A sticky floor. Vibram soles. Caught myself-ha-on my left forehead. Whack on the dining room floor. Ouch. Looked over at my right hand. You know how fingers look. My little finger’s top two joints pointed away from my hand at a 70 degree angle. Well. That didn’t look right. What the nurse said in the E.R. Doc Miner, too.

I will be happy to put 2026 in memory. Not been a great year. In this visit to the ER, required due to my head banging, I felt no pain. Until. Dr. Miner got a syringe full of lidocaine and stuck a needle in the soft tissue of my injured little finger. He worked the needle around the bone. OMG. That hurt.

After he picked up my hand in his. “That’s done.” Sure enough, I had a straight finger. Easy. If you ignore the fall, the ambulance ride, and that damned needle.

Also. CT scan. No skull fracture. No brain bleed. No neck injury. Time to go home. So glad I’m at Elk Run.

 

Same day. After I was back in 308. The mail. A thick card. Who’s this from? My fellow docents of the class of 2005(I think.) had written messages while having a lunch together. Unexpected. Sweet. Couldn’t have come at a better time.

 

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.

Lunch Out

Yesterday. No resolution yet on Shadow and the night. Crystal, unlike Nashay, has no problem taking her out after dark.

Most staff here work 4 twelve-hour shifts. That means the rhythm of their appearance changes often. I get the reason for a day shift and a night shift. It gives us residents continuity of care throughout the time we’re awake. Even so it would be nice to have caregivers on a more predictable schedule. Maybe I’ll get used to it.

Petscan results delayed. Appointment now on Monday.

Lunch out yesterday. Ginny and Janice. Ashley, Janice’s three year old niece. Patrick and Allen? Two men with great white beards. Felt at home.

We went to the Hummingbird, the Creole restaurant opened by Josh and Sarah, two CBE members with New Orleans roots. I had beignets (of course) and blackened mahi mahi po-boy.

We laughed and talked for an hour plus. By that time I’d grown weary, but happy. I can go out for lunch. Breakfast. Not too often. It did wear me out, but a big advance for my life.