Procedure Day

 Entry 1     5:43 a.m.

Jenny woke me at midnight via text in horrible pain, so bad it broke through her regular meds.  This was the worst pain she has had, I can say. I got her Dilaudid, the drug she was told to take when the pain breaks through the oxycodone. Bringing her meds to her with water, she took the Dilaudid and then I laid with her. She writhed in agony. I rubbed her back and arm. She is so skinny I felt bones wherever I touched her.  She fell back asleep about 12:43 a.m. I quietly got up and retreated to my room, hopeful she would now sleep until morning.

Entry 2     8:08 a.m.

Up since 5:00 a.m..  Jenny slept through the night. Dogs didn't wake until after 7:00--thank you pacific standard time.  Better yet, frozen bones I got at Mudbay kept the dogs occupado until I finished my second cup of coffee. So almost 20 minutes of quiet and Warner Bros. cartoons I did have.  It was like being 8 years old again, watching J.P. Patches before school. 

As asked, I woke Jenny at 7:30 and brought her yogurt to eat. No food after 8:00 a.m. for her, because of the procedure this afternoon. As I was handing her the food, she told me she slept through the night thanks to the Dilaudid, and said that the pain was gone this morning.  I imagine the Dilaudid hasn't worn off.

Heather is coming to pick up Leiney and Jenny to drop Leiney off at Murray's so Murray can take Leiney to pick up her car in Mt. Vernon. The repair cost was probably equivalent to the cost of the car--buy I did put all-weather tires all around.  Sigh. Heather and Jenny will hang out, then Heather will drop Jenny off at ho.e at 12 and we will head to VM.

Not sure what I will do during the procedure. I am allowed to escort her up, but then must leave. I thought I'd go to work, but I already know I will be too worried about her to focus.

Entry 2     9:31 a.m.

I am now reading about end of life care for people with PDAC. It turns out that aggressive therapy is a big problem at the end of life for such patients, and we know from discussions with people, that Dr. P.'s solution is always another chemotherapy--quality of life be damned. While Jenny says she wants to stop before her QOL craters, I don't know what she will do. 

A study of elderly patients and when they sign up for hospice care--it makes sense they studied this cohort given that is who typically is killed by this disease--has some particularly damning statistics.

Effective end‐of‐life care is essential for patients with cancer, and discussions surrounding high‐quality end‐of‐life care include considerations about appropriate use of treatment and timely use of hospice services (ideally prior to the final week of life). Optimizing end‐of‐life care is particularly important for patients with PDAC, as they often experience substantial symptom burden including pain, fatigue, poor appetite, and nausea. Research has demonstrated that during the final months of life, patients with PDAC can experience increased symptom burden and decreased overall quality of life. Hospice services can help manage symptom burden and enhance the quality of life for patients at the end of their life. However, a large proportion of patients with cancer do not receive hospice care, or enroll late, despite increasing awareness of the importance of hospice services. Therefore, patients miss the opportunity to receive all the benefits and support that hospice provides. In contrast, evidence suggests that aggressive end‐of‐life care has increased in recent years for patients with cancer, including chemotherapy receipt, hospitalizations, and intensive care unit (ICU) admissions, potentially related to the introduction of newer treatment options."

To what end do oncologists insist on aggressive chemo at the end, or ventilating someone? It is hard to understand, except that they are catering both to the fear of the patient and family of death, and maybe battling their own sense of failure at a disease that at Stage 4 is all but impossible to beat.

Entry 2.    2:58 p.m.

This platform is fickle and nuked my second entry. I am going to try again. 

Jenny is getting her procedure done--or should be.  She texted about 40 minutes ago and said her lungs are about one vertebrate longer than typical lungs, and they may have to reschedule to do an endoscopy instead of going near her spine. There is a risk of paralysis with the procedure, however slight, so I am nervous.  Did I mention el pinche called when we were walking to surgery? Jenny immediately hung up and was mum when I asked who called, but the way she tamped down on the decline call icon, it was obvious.  Whatever.

I spent the better part of the last two

1990s Saturday mornings used to mean buying my political magazines and getting a latte at the Broadway Market.

hours walking around 1st Hill and Capitol Hill. Some of my favorite memories were made here. I worked at 15th and John Safeway for 5 years out of high school, long enough to grow up and understand I needed to do something with my life. Some of my closest friends are people I met then. I loved Capitol Hill.  I became the person I am today largely shaped by the arts, culture, and mores of that time and place.

But walking around today, I saw almost nothing really left of the memories I had. The few exceptions, like Dicks Drive-In and Seattle Central are like touchstones, reminders of what once was a vibrant diverse and interesting place. Long gone are Pagliaccis, Winter's Tux Shop, Bailey Coy Books, Charlie's, Torrey's Eggcetera, Ernie Steele's, Safeway, The Broadway Market, that terrible Chinese restaurant on the north end of Broadway, Orpheum Music, The Harvard Exit, The Broadway Grill, Cornish School of the Arts, B&O Espresso, Rent-A-Yenta, Hamburger Mary's, All That Jazz, Bonnie Watson, Matzoh Mamma, The Canterbury, and on and on and on.  Full disclosure, I don't miss the Oxygen Bar.

Instead there are generic boxes everywhere, from Pike to Harvard.  Big featureless and bland apartment buildings stand where beautiful and in some cases falling down buildings used to exist. 

Worse, the polyglot admixture and overlap of gay and lesbian culture, combined with artists and dancers and students and rich, and middle class and poor people, black, brown, Asian and white is largely gone. Just gone. On any given day, you could feel the vibrancy of a place alive with possibility back then. Today, it is less interesting than a story told by Floyd the Barber. 

Disheartened and under-dressed for the  cold, nor desirous of throwing axes or drinking a craft cocktail, I walked back to First Hill and the car, where I sit on pins and needles, waiting to hear from Jenny. She is in recovery and I am waiting.

Entry 3     4:10 p.m.

Jenny's pain doc called. Procedure done. The numbing agent should keep pain at bay today, but it takes a couple days for the alcohol to work and deaden the nerves.  Thus, Jenny may have pain tomorrow. She will have low blood pressure for a bit and diarrhea. The pain should be gone completely by Saturday.