kvetching up

Entry 1    3:30 PM  El Regreso Del  Pinché Happy Tuesday. Fresh from solving the cooling station mask crisis, don't ask, I am here to announce that the reports of the demise of El Pinché Motherfucker were greatly exaggerated. Okay, so no one reported demise, but they could have. But more on that in a bit. Puppy went to the bathroom 3x, maybe 4x in the middle of the night.  I'd complain, but I am tired, and grateful. Our hotbox house kept the heat in. When we went out at 3:15 a.m., neither of us wanted to go back in.  We must have stood in the cool gusty winds for 15 minutes before returning inside.  The light socket that the fan that keeps the air moving, and sometimes cool, is wired to the light switch, so now knowing that the air was cool outside, I flipped the switch on, and fell asleep under electric lights.  How nice. Leiney spent yesterday downstairs in the basement, where it was probably only 100 degrees.  The upstairs must have b...

I have obsession s.  Usually they manifest around music.  Back in 2001, when mp3s seemed to be falling out of the New York sky like ash from the Trade Center, I must have stumbled upon 9 or 10 versions of Gloomy Sunday , a song I had never heard before.  Also known as the "Hungarian Suicide Song," the word gloomy is a bit of an understatement when considering the lyrics, which are performed from the point of view of a bereft woman singing of her dead lover and her plans to join that person.  Bjork's version is as brash as she.  Sinead O'Connor also has a lovely version, with a klezmery sounding clarinet intro, the song  then moves through until it reaches an almost late-1950s hip jazz flavor (think Frank Sinatra, Tony Bennet, Mel Torme). Given Sinead already sang a song about being stretched on her dead lover's grave, it is fitting she recorded Gloomy Sunday.  Billie Holiday's version can't be beat, in case you wondered. But you can get creeped out se...

We went to a funeral today for the mother of the husband of Jenny's best friend Amy.  It was a sweet ceremony.  The attendees sang " It Is Well With My Soul ," a favorite protestant hymn of this atheist.  Penned in 1873 by a Chicago lawyer who first lost his wealth in the Great Chicago Fire, then his four year old son, then his four daughters on a ship that sank in the Atlantic.  He was inspired and wrote the lyrics as he neared the place the ship sank that took his girls' lives.  It puts things in perspective.  I may need to stop kvetching.  If only I had faith in something. I may be wrong, but it felt entirely like Mark, Amy's husband, was utterly rude to me when we interacted. I suspect Jenny's lies to Amy have changed the way he feels about me. We had always been warm and friendly toward one another.  Jenny went to the funeral without covering her head.  She is so brave.  I want that fortitude.   Looked at some homes last n...

Entry 1     10:10      "Are You Trying To Split Us Up So It Becomes Every Man For Himself, and Every Woman for Himself?" Yesterday was more than a bit demoralizing.  We bid 31.78 percent over asking, and still got bupkus. 5 bids down the drain, each more insane.  This market is just too much.  I looked at the inspection report for the other home we were looking at, and it had more fixes than a day at the races at Longacres.  31.78 percent over asking.  The winner offered about 33%--but who knows what their escalator looked like.  Whoever paid the price, spent way too much, just as we were prepared to do.  Up In Smoke.

  Entry 1     9:41 Just rang off the phone with the healthcare recruiter--who was calling from the U.K.  Why would a healthcare organization based in the Western US use an English recruiting company?  It isn't for the polish.  The recruiter was from the North of England, and sounded like Brad Pitt in Snatch.  I must have said, "I beg your pardon" five or six times. I know that Providence and 1199NW have been sharks and jets since at least 2000, when I was back in law school.  Probably longer.  I don't mind working to enforce the rules, don't mind bargaining a hard contract, if it is fair. The union almost took 15k employees out on strike in January. Hmmmmm.   .   .

Entry 1     10:35 a.m. If It's Monday Morning Jenny woke up this morning and came to my perch on the sectional to report she feels better and has no pain.  She feels so good, in fact, that she left for acupuncture without any pain medicine with her or in her system.  This is as I expected.  The biorhythm is not confounding for me, I just wish I could help her see over the horizon so she isn't planning her death, discussing what she thinks is her impending doom at the dinner table with the kids (complete with disclaimer, "I don't plan to die for 20 or 30 years, but if I do. . .").   Turns out that Jenny will not have chemo on the 29th, just blood work and a scan, and I would guess a visit thereafter with Doctor P.  That she, the children, and I have had the good fortune to see her survive this for nearly a year, is unexpected and a gift.  I am grateful that we have spent time in the last few days as a family with the girls both together,...

Entry.   1.  8:19 a.m. I am sitting in the backyard quiet, a warm sun, gentle breeze and birdsong making it hard for me to get coffee.  The dogs are with me, otherwise the house is asleep.  Solitude, what I crave, is giving me this gift.

 Entry 1.  7:15 a.m.   I woke up from a dream that I worked for the world's dumbest nature preserve--a monkey that looks like a bush baby steals a giraffe and rides it like a horse to jump the preserve enclosure after the owner laid off almost all of her staff due to COVID-19.  This was followed by another dream that I was buying a home with or from Carol Baskin.  I also had a dream earlier in the night that I bought some sprawling ramshackle and dirty 1970s home on the beach between Normandy Park and Des Moines and for reasons not currently clear, the caretakers of the home were Seattle U students, performing the work for the school or a class.  Unclear.  

Entry 1     11:04 a.m. It's Friday, I'm In Love With Friday, that is.  Sitting in another interminable meeting talking about minutiae about job duties and whether they exist in a given job specification or classification document.  Don't worry, its putting me to sleep too.   In my spare time this morning, thinking about where the doctor might suggest we go after the final 1st year treatment on July 15, I came across a research paper that tells me that gemcitabine may be out as a treatment option--which makes sense given it appears to have stopped working.  It is important to note that Jenny has been alternating her chemotherapy drugs every two months between gemcitabine-paclitaxel and folfiri.  This regimen is experimental, meaning if you look on the internet you can't find anyone doing it, no papers on it, nothing to recommend or warn against.  Jenny has beaten the odds thus far, so there is that.  But anecdotal isn't the same as s...

Entry 1     11:00 a.m. Malaise .  The grass is long.  The grass has never been this long.  But I don't cut it.  I am not meeting simple tasks.  I can care for Jenny and the kids.   I can care for the puppy, its almost primal caring for another. I am writing it down here, but I don't want to talk about it, won't raise it as an issue.  I may raise it with my therapist, I may not. There comes a point in life where, assessing progress--weighing your contribution--you can look at the scales and see whether you have been a net addition to fixing the human condition, a net negative, or a blank.  Given the nature of the universe, this is just a vanity of life, with absolutely no meaning except for the living.  This idea should give me peace, given I feel stuck and dissatisfied professionally and personally, with no light at the end of the tunnel.  It doesn't. This creeping malaise feels more like being absorbed by The Blob at this...

Entry 1     10:27 a.m. Just before our love got lost you said, "I am as constant as a northern star." And I said, "Constantly in the darkness Where's that at? If you want me I will be in the bar." -from " A Case of You " by Joni Mitchell Tuesday  Two days away from chemotherapy.  I am wondering, as always, what that will bring.  CA 19-9, the cancer antigen/marker measurement, usually isn't done every week.  But I have a sneaking suspicion that this will now change, given the last reading.  Jenny seems remarkably healthy, off this morning to school, ostensibly to visit with her principal.  Ostensibly.   Life is so disjointed in this time. Everything is up in the air, everything unclear.  COVID-19 alone would have screwed me up, but all the transitions, the shift or shifts in thinking and expectation(s), the loss of narrative thread.  Who am I, even?  Who the fuck are you?  I thought I gave up angst as a teenager. I had...

Entry 1     9:08 a.m. Emergency is on the television as I'm working.  Two exhausted dogs from a morning of rapscallion play, lay near me, like comic book ends.  Abby is in virtual class, Leiney downstairs getting ready for work later today.  Jenny went to see Moni's new condominium in Yakima, yesterday afternoon and returns this evening.   This puppy is a handful, as puppies are. Every time I turn around, she is engaged in more mischief, most often super naughty mischief.  I have the attention span of a gnat, so that isn't helpful.  In more encouraging news, Buddy has moved from resentment to a second puppyhood.  The two of them rough house almost non-stop, chase each other down the back stairs in the yard, where they explore and wrestle as much as possible.  This has made it easier to handle a new puppy to be sure, and Buddy is in better spirits.  

Entry 1.    11:54 a.m. Now, I Give My Baby, Now, The Ninety-Nine Degree First, the puppy is better.  Huge relief.  Huuuuuuge relief.  I laid with her on the floor last night, keeping the sick and lethargic puppy company, like a scared dad.  But, today, back to rambunctious and frolicking behavior.     Abby and I agreed last night we'd head over to Goodwill to buy lots of old CDs, her latest hobby--a throwback chip off the old block.  We got in my 2005 Jeep Grand Jalopy, I started the car and backed around the corner to change direction.  When I put the car back in drive, the dashboard warning light lit up like Seattle's 1st Avenue in 1985, red lights flashing everywhere.  The electronic ABS system had experienced failure. I am grateful that it didn't happen last night as I drove from my friend Paul's house down 23rd towards Montlake (after an amazingly great dinner and company, btw).  But, I am afraid its time to put the o...

Entry 1     9:10 a.m. “Feminism isn’t about making women strong. Women are already strong. It’s about changing the way the world perceives that strength.” —  G.D. Anderson   Hell to Pay Buddy has met his match in now 8 week old Willow Ruby Ida Miller Gamache.  She will weigh as much as him, likely in the next two weeks, and then forget it.   I love him, don't get me wrong, but he's a dick.  He is mean to her, and constantly tries to dominate.  Chest bumping, biting her throat, just generally asshole behavior.  Meanwhile, she frolicks, worships him, and tries to do everything he can, all while having paws three times too big for her body.  The reign of terror won't last, and we saw a bit of that last night.  We gave each of the dogs a new rawhide-like safe bone to chew.  She is incredibly mouthy, but has the attention span of a baby, so hers was barely touched during the day.  He, on the other hand, took his bone, jum...

Entry 1     10:00 a.m. The Game Is Afoot On or about Memorial Day I cut my foot with a shard of decorative glass that I stepped on in the basement while doing laundry. It fucking hurt. I had Jenny pull out the shard,  a la Androcles and the Lion.  I thought she had gotten all of it. Unfortunately, the wound didn't heal, nor did the pain subside. So, last night, after much prodding, I went to urgent care.  I couldn't bear much weight on the foot.  The x-ray showed a foreign body.  The PA who saw me decided to numb my foot and remove the debris.  Mary, Holy Mother of Jesus did the three injections into the ball of my foot hurt.  I was warned, but wasn't prepared. Fuck, who could be?  I screamed and clutched the handles of the birthing bed they had placed me on, and made sounds like I was being stabbed to death.  The needle was incredibly long, went incredibly deep into my foot.  I moved, involuntarily, from the pain of each ...

Entry 1     9:11 a.m. The blissful memories of raising our children in the big craftsman back in the day still hangs in my mind.  On the other hand, giving the house up to live in California felt right and still feels right, given the way Home? life has gone. I don't know what doors would have opened, and what doors I might have closed forever, making that decision, but I know to my core it was the right one.  That said, Jenny and I are tired of being renters, and I want her to be comfortable in her own home.   We have managed to save lots of money--strangely even more since the affair was found out. I am watching finances, and they aren't in hotels 2x a month on our dime aren't out at restaurants, nor secretly traveling together for 5 day get-a-ways to Las Vegas, or elsewhere. And yes, despite all that, despite the fact that she won't let go of that, and that I sleep on the couch, I want out of this rental and back in a home of our own.  Today we bid ...

Well, support for Occam's Razor exists in the medical journals.  Her cancer is growing and the gemcitabine is no longer working, would be my wager.   I scoured the oncology journals and found this information: Finally, the change in CA 19-9 levels over a 4 week time period (“CA 19-9 velocity”) has been shown to be related to disease progression. Patients without disease progression were shown to have a slower change in CA 19-9 over a 4 week period (1 U/ml/4 weeks) as compared to those with disease progression (131 U/ml/4-weeks) ( P  < 0.001) [ 31 ]. These studies suggest that a decrease in CA 19-9 levels during or after treatment are predictive of disease remission and whether a patient will respond to chemotherapy.    From 3k to 8k in two weeks.  Not good.

Entry 1      9:30 a.m. I just read the now posted doctor's note from June 3, and reviewed the radiologist's report from the day before (also just posted).  The doctor's note offers different analysis from when we met.  He allows for "slight progression" in his note, different than the claim of stable he made to us just three days ago.  It also ignores the growth from the week before.  In other words, the radiology report notes that there has been slight progression from the prior scan, not slight progression generally.  So, I don't know what to think about his honesty, it seems tenuous. He doesn't have a monopoly on that trait.

Abby and Willow. Entry 2.     6:42 p.m.   Abby has her wish fulfilled. For over a year Abby has been asking and searching for a dog.  Today, thanks to someone showing an act of kindness to a stranger, the 8 week old Bernedoodle arrived.  Abby has a crate, toys and an enclosure in her room, and is spending her day with the puppy.  It loves Hozier and Phoebe Bridgers, based on the experiments of Abby "Skinner" Miller Gamache.  This is going to be work and responsibility for all of us, especially Abby and me.  I am hopeful it will work out.

Entry 1.    1:16 a.m. So, readers of Jenny's most recent Caringbridge post may be experiencing cognitive dissonance when reading my own recent journal entries.  I certainly am.  Jenny describes that her disease is stable,  maybe changing a little.  I describe clearly growing disease.  It is true that her oncologist said in his eyes she is stable and that he disagrees with the radiologist report from two weeks ago on May 23, which asserted the CT showed growth of the tumor and mets, and also new mets. When pressed, Dr. P said each reader may see something different. Also note, he admitted he could not explain the exploding CA 19-9 numbers. My biology teacher, Mr. Hicklin, taught me Occam's Razor--i.e, the simplest explanation is usually the correct one. Rising CA 19-9 could be explained most simply by cancer growth. But wait, there's more.  While the actual radiology report wont be posted for another 24 hours, we do have the Emergency doctor's not...

Every Sunday Afternoon We Forget About Our Cares I awoke this morning in a good mood.  A strange night of sleep.  I had dreams about my family and the affair, which hasn't really happened before.  But the dream was vivid.  I had to remind myself it was a dream, so as not to carry that around all day. I checked on Jenny frequently through the morning. She slept until around 10.  I came in and, per usual, she immediately hid her telephone. You can't hide your phone in an unobtrusive or secretive manner when the person you are hiding it from is facing you, three feet away. I didn't say anything.  I made peace, not with the affair, but with the pointlessness of forcing her to lie to me when I ask her what's going on, or to lie to me and tell me there isn't an affair happening any more.  Again, hiding the phone is a regular occurrence, if not daily, almost daily.  I do find it tedious.   Jenny is depressed, which isn't new. Two days ago the p...

Entry 3     3:30 PM It Never Entered My Mind The VM social worker arrived today before Dr. P.  We had a long discussion, the therapist,  Jenny and I . Initially, it was just the MSW and Jenny talking.  This was intense, the MSW firmly but gently pushing Jenny toward reality. When asked by the social worker how she is doing, Jenny told her she is scared, but trying her hardest to keep a positive outlook about her.  "Whenever I say to my cancer coach, 'if I beat it,' my coach says, 'Not if, when you beat it.'"  The MSW was clearly uncomfortable with this power of positive thinking bullshit.  She told Jenny it's possible to hold two beliefs at the same time, that she has to beat this cancer, but that she may not.  She explained that whatever Jenny's belief is, it isn't going to manifest as illness or wellness. In other words, if she thinks the cancer is going to kill her, or if she doesn't stay positive, it won't result in tumor growth. The MS...

Entry 1     9:18 a.m. The Final Countdown Folfiri day.  I built this chart last night, because I understand numbers better visually.  The last data point is from yesterday, but is not labeled as such, some weird artifact of Excel. Folfiri's efficacy is better than gemabraxane.  Her mets, and yes, as a reread of the radiology report confirms, her tumor has also grown by .5 cm.  Also, there are new mets on the liver, two sub-measurable, one .6 mm. This could explain the pain increase, if the tumor grew in such a manner as to push on the celiac nerve plexus, a bundle of nerves adjacent to the pancreas. I hate this day because it brings terrific nausea, anxiety, and suffering for Jenny.  Additionally, we are all anxious worrying for her. This is the final stretch of 48 weeks of chemo, weeks 40-48. Chemo every other week, with a take-home pump.  On the bright side, the bernedoodle comes Saturday afternoon. What happens after this regime is over?  ...

Entry 1 Dreams of living near the water must be met another day for Jenny.  We got beat by 15k.  It was a beautiful home near Be'er Sheva Park , but I have perverse satisfaction (mixed with ample doses of disappointment), after what I disclosed in my last entry.

"What The Actual Fuck?" Entry 1     10:06 a.m. I reached out to the care team over the weekend via email, given Jenny's current state of pain.  I want to stress, before I describe the latest event, that this suffering is happening to all of us, not just Jenny.  She is experiencing horrible pain and lethargy.  The kids and I are dealing with our inability to help, standing by helplessly watching as she doubles over in pain, crawls on all fours, begs for death.  Her lethargy makes it hard to plan anything. So, at 10 AM, the nurse from the palliative care team calls in response to my e-mail.  They would like to see Jenny, they tell me.  I go to Jenny, who is just out of the shower and toweling off, and tell her they would like to see her at 12:30 or 1:30.  She, annoyed with me says, "I didn't know they were calling. " I remind her of the email I sent, and that she read.  She told me she has scrabble with friends today and can't go....

If You Didn't Care What Happened To Me Jenny was too tired, too weak and in too much pain to accompany Abby and me on the hunt.  The best laid plans.  .  .and all of that.  So, Abby and I went and did recon all over South Seattle.  From Thornton Creek/Northgate to Judkins Park to South Beacon, we met our realtor and explored. We found no gold, lots of dross, and a bit of something in-between.  I called Jenny from each place, giving her my impression of each. After we finished, Abby and I went and dropped a lot of money on gear for the dog, and grabbed lunch at Sprouts, a chain grocery store I used to frequent in my California days and which has established a beachhead at 130th and Aurora. Jenny managed to get up around 1145 and go to lunch with friends.  She was weak and tired the whole time, I could tell, hearing it in her voice every time I called.  She came home and was feeling low.  Sad and angry her eyes were, her mien sad and quiet....

Entry 1 Blind Faith, God's Grace, Nothing Else Left To Impart Its after midnight. I couldn't prepare myself for the anguish, the despair of these last several days.  Another night of pain, another night of being unable to help, utterly useless. Listening to the pleas of a person who has been with you so long that she is part of you, begging for the end to come, pleading for the agony to cease, tells you she wants it all to end.   You would do anything to make her better, anything to bring relief.  And then, it happens again, the next night, and the next night, and then again a few nights later.  She suffers. She pleads. You try and comfort her to no avail. You both edge toward the realization that when this pattern stops, things will only be worse.  

Entry 1 And We'll Hate What We've Lost But We'll Love What We Find Jenny has seemed sicker the last week or so.  Her long afternoon sleep, yesterday, did end when my sister arrived for dinner.  However, Jenny had zero energy all evening. She felt terrible all night, both physically, I had to attend to all of her needs, and emotionally, she felt guilty she couldn't help.  I comforted her as best I could, and tried to assuage her feelings of guilt.  She has never been sick like this so far out from chemo. Truly. Never. She was in utter discomfort; pain in her upper abdomen, in her lower back, and in her spine.  Pain relief was a Hobson's choice.   She could take more pain killers causing more abdominal pain in the future, but offering relief now, or take no more painkillers and suffer excruciating pain now.   Between 10:30 and midnight, the agony increased.  Convincing her to take meds at around 11 and again at 11:45, I otherwise was powerless ...

  Entry 1 Never A Dull Moment Yesterday I slipped and fell in the bathtub.  Earlier that day, Jenny had taken a soaky bath in epsom salts, and I didn't know she had used the salts, which made the surface slick. I jacked my shoulder muscles preventing a concussion or worse.  It was shocking how fast I went down and also how quickly I caught myself.  If I were in my 70s, that would have been it.   This morning, we got up early and proceeded with the quest for the grail, or given our budget, the plastic Solo cup. While touring a house, I get a call from Abby.  This doesn't happen.  I answer, and she says, "First, I want to let you know I'm ok."  Never a way a parent wants to have a conversation begin with a new driver.  "Okay, I say, what's going on?"   "I am in the park at the first exit off I-90. I just got hit by a U-Haul in the 1-90 tunnel and hit the wall."  The truck had changed lanes without seeing her, despite being t...

Entry 1   Goals, Planning, And Dark At The End Of The Tunnel When I was in my mid-20s, I lived a mile or so away from my friend Shaun, who was 21. We met when I was a counselor at Camp Waskowitz MDA camp and he a camper.  MD stands for muscular dystrophy. Shaun had Duchenne's, a particularly virulent genetic disorder that kills all the muscles in your body, slowly, starting generally around the age of 2. 99.9999 percent of people with Duchenne's don't make 20.  I could go into the science of the disease, but suffice it to say, it is a fucker. Time Flies Anyway, one day, Shaun calls me up and asks me to come over.  He said he needed to talk to me. We were friends, not close friends, but bonded after spending more than a decade together with others at camp.  I hopped in my truck and headed over.  When I got there, his parents were gone, or just leaving. I don't remember. Given that he couldn't move any part of his body save his fingers and his head, they...

A Heart That's Full Up Like A Landfill Chemo bye-week.  Its quiet.  I am laying on the McCrosky mattress while Jenny is in the living room watching the Friends Reunion.   If I'm honest, things are strange here.  Not bad strange, just strange. Maybe we are just a microcosm of our times.    Snippets of the actor's voices waft into this room from the tv Jenny is watching.  Mixed with this are sounds of Abby's show that is playing  in the kitchen, turned up loud enough to be heard  over the whirr of the Kitchen-Aid , and the dog's nails clicking down the hardwoods  as he leaves the room, each step  sounding like a slim branch hitting a window as it sways in the wind. Alexander cutting the Gordian knot As I lay here collecting my thoughts, Jenny texts, asking if I think she should take more pain meds. Her pain is rising again.  I tell her I do think so if she is in pain, and suggest she discuss it with the palliative care docto...

Flying Too Close To the Sun Entry 2 12:27 PM Last night's therapy was insane. I won't go over the details here, with one exception. I have written it all before.  However, Jenny did insist she isn't having an affair. She defines that to mean she can't spend the night or fuck him, to be clear.  But she never says that. The Fall of Icarus by Peter Paul Reubens Today is an unusually busy day.  As I finished a meeting just before 12, I could hear Jenny on the phone, apparently talking to her sister, Moni. She said, I am probably talking too loudly, which peaked my curiosity, so I walked to the bottom of the basement stairs where I am working, to hear more clearly, because I have become a creeper for information, given lies are the currency of the realm. She, Jenny, was telling Moni that last night  Eric  the pinché motherfucker's wife told him she wanted a divorce.  So this tells me two things.  One, she is a lying liar, not a newsflash.  Two, that he...

I'm coming to the edge of the widest canyon My companion's dear I'm starting to question my manifest destiny My claim to this frontier I'm coming to the brink of a great disaster End just has to be near The earth spins faster, whistles right past you Whispers death in your ear Don't pretend you can't hear Don't pretend you can't hear -from Manifest by Andrew Bird The morning brings with it another day of excruciating and unremitting pain for Jenny.  The pain meds take forever to work, if they work at all. The pain, a phantom that moves around her lower extremities, is likely from her tumor. Referred pain, pain caused in one part of the body that shows up elsewhere, isn't uncommon.  She is so miserable, I just want to solve this, so she can be comfortable. Jenny has commonly, like today, awakened from pain in the dark hours,  and gone to the kitchen seeking pain relief.  This early morning that didn't work, so she arose again in the light, just a...