kvetching up

Entry 1     12:01 p.m. You know,” said Arthur, “it’s at times like this, when I’m trapped in a Vogon airlock with a man from Betelgeuse, and about to die of asphyxiation in deep space that I really wish I’d listened to what my mother told me when I was young.  “Why, what did she tell you?”  “ I don’t know, I didn’t listen .” -Douglas Adams' Hitchhiker's Guide to the Galaxy Life can be unbendingly painful, make moving hard to do, moving forward almost impossible--a lot like my left knee. I went to bring in the garage and food waste bins in this morning, and found that someone had carefully gone through the recycling bin, casting down my neighbor's slope those recyclables that didn't catch their After I picked up a lot of the refuse, I paused to take a snap.  The hill really was that steep. Had I fallen, I would have landed in a blackberry bramble. fancy.  On the bright side, the extra cardboard that had been outside of the bin, had been taken away, so i...

 

 Entry 1     10:18 a.m. Inter A week from the MRI, and my knees aren't quite so bad. Albeit, my walk remains more Charlie Chaplin than Long John Silver like.  Still, I can move a bit better, but pay for it with aching knees.  It could be worse. I could have terminal cancer. I installed a motion sensor, a glass break detector a camera with alarm and motion sensors, and a motion sensor light around the outside of the downstairs yesterday. I also affixed stickers to the windows. I have two more lights and one more camera to install.  The camera and light I installed during the deluge; a real old-fashioned PNW experience.  I slept in my bed last night for the first time in two weeks.  I woke repeatedly. I don' think I will be able to do that peacefully until I have the downstairs sliding glass door replaced with security doors and bars placed on the 2 huge windows. My love hate relationship with Seattle does have a lot to do with the years...

 Entry 1     6:55 a.m. A few weeks ago Jenny had a biopsy done on a liver metastases to identity whether there were any genetic sequences that could be targeted through immunothera py.  Immunotherapy is, as described by cancerresearch.org, a form of cancer therapy that uses a person's own immune system to fight the cancer.  Such treatment may include "targeted antibodies, cancer vaccines, adoptive cell transfer, tumor-infecting viruses, checkpoint inhibitors, cytokines and adjuvants." Adoptive cell transfer is the use of your own T-cells to fight the cancer.  Omi underwent this as a second-line response to her lymphoma.  It didn't work for her, obviously, but it can work and is a powerful tool fighting against cancer.  If Jenny's biopsy results demonstrated she was eligible for this treatment, the procedure entailed extracting T-cells from her bone marrow, growing it in a petri dish for a few weeks to create more, and then injecting them int...

  I went through the genetics report. Exhausted.  Will write about it tomorrow.  I will say it is puzzling.

  Entry 1     1:23 p.m. Yesterday, I made applesauce with honeycrisp apples. It feels good to usher in the fall with that tradition, to quell the sense of wooziness and disorientation. I am craving that applesauce right now. 

Tomorrow is chemo day.  Cursed chemo day. It's an early appt., we should be done by the afternoon.  Numbers will be telling. Jenny is weaker, but refuses to slow down. Who can blame her. Today, an installer for invisible fence arrived at 8:10.  I roused her at 7:40, and she was up and with the installer for a site inspection and initial dog training that lasted until 10, then went and built tiny houses, got home around 5:00 p.m. and fell asleep. We had planned to go to Costco at 5:00.  I didn't finish work until almost 6:00, and Jenny got up and off to Costco we went.  Then, we get home, eat dinner, and a friend arrives and off she goes.  Turning and turning in the widening gyre -- Victor Pasmore. I am sitting here listening to Norm MacDonald clips.  The house is so different without Leiney.  I called her tonight to say hello. I miss her, and wanted to wish her luck on her first day of classes, which is tomorrow.  So, she answered the phone, ...

Entry 1 .    10:49 a.m. Riding with Abby to accompany Leiney to Western. We took three cars so we could drop Willow off with a dog sitter, Leiney could have her car, and Jenny could spend the night.   Abby seems only to listen to music written and performed by women , period , at least in the last 4 car rides I've had with her. A lot of it very age-appropriate angsty and angry.  She has tickets to 3 concerts in the next month.  All are angsty , young , queer, solo women performers They nailed her demographic. Moving. Leiney is excited, genuinely so. This COVID-19 year delay may actually serve a genuine purpose.  Her bye spring quarter last year led to her Amnesty job. They are a tight-knit group, and she has the most confidence I have seen since she entered adolescence.  I, unsurprisingly, will miss her. We all will, each for different reasons.  I have someone Abby's tough exterior melted like taffy on a summer sidewalk. who wants to debate ...

  Entry 1.  7:22 a.m. The New Yorker has an article about my professor, my mentor,  my former boss (I was his TA for two years and then his teaching fellow in constitutional law at NYU), and friend, the late Prof. Derrick Bell Jr. A leading anti-racist, scholar, author and activist of civil rights for people of color, women, the LGBTQ community and more, he taught constitutional law through the lens of critical race theory, and in fact founded the discipline back in the 1970s.  A brilliant mind and a compassionate soul, his work is, and will remain, a seminal analysis of race, racism and American law.  You can read the story without going through the paywall here: http://hnn.us/article/181240.

 Entry 1     5:28 p.m. CA 19-9 Jenny looked at her CA 19-9 level today while out. I was working. She began texting me. She asked me why her tumor marker, over 37k, is so high. She told me she doesn't want to die. I don't really know how to respond. I say, lamely, I don't want you to die, either.  But she has receded, since we moved, back to believing completely that she is going to beat this terminal disease, through sheer will.  I must say, she is well exceeding her life expectancy.  This disease kills almost everyone with her precise diagnosis.  The only way it would not kill her sooner rather than later, is if the mets on her liver went away, she got no new metastases elsewhere, and the tumor and any cancerous lymph nodes were then removed. That would, more likely than not, only extend her life a couple years, and the surgery is brutal--they remove, resection and redirect many of the organs of the digestive tract. It is fraught with risk, and she is...

Entry 1     11:02 a.m. Jenny and I are having pleasant mornings, before she leaves to spend time at TOPS each day, as she is doing today, and did yesterday as well, and the day before. The district said she can do this as much as she wants. If I were in HR, that would not be my position, but I do like to play by the rules. I have FLSA, ADA, and FMLA concerns, let alone Eric el pinché concerns. This morning Jenny had to drive Abby to school--Abby's car is in the shop through today.  Abby learned that her car would be released on its own personal recognizance when she came up from her room. Already in an uncharacteristically good mood, she was ecstatic hearing the news.  In the car, with Jenny, I learned from a subsequent call, Abby and Jenny had a really good heart to heart.  Abby divulged some stuff that she is working through, and then, sua sponte, told Jenny she wants to be a camp counselor at Camp Dudley next year.  This, from a kid who has to...

This day was good.  And I am exhausted, but need to write this down against forgetting.  I'm negative. Covid-19 negative. I am sleeping downstairs for the time being using a chair, an ottoman and a table as a bed.  That is a story for another day, but just know I am.   I got up late this morning--well after 7--and after the perfunctory coffee, and some raisin toast, went upstairs and sat on the side of Jenny's bed and woke her up.  For reasons I can't A spinning gyre. explain, it made her day.  She was so pleased I had done this, she told me how lovely it was that I had done that.  My first thought was, I bet she wishes el pinché could do it instead. My second thought was, accept that she is happy and move on with the day, expecting a more pleasant few moments with her than last night's debacle. Jenny left around 9 to pick up meds and do whatever else was on her list, which was not short.  I don't know how she manages to function, when s...

 Entry 1     8:36 a.m.       Prompt We are going to get COVID-19 tests in a few minutes.  I am looking forward to getting the PCR test.

 Entry 1 We had 20 ppl over on Friday night for ny birthday, because I'm stupid. While I didn't organize the party, I was tickled it was happening, and certainly okayed it, when asked. Everyone was vaccinated who attended save Hanna, my 5 year old grand niece.  She and her Less than maximum exposure. parents were masked most of the night, the only ones to keep them on, save for eating. This morning my niece notified us that Hanna has tested positive for COVID. They had a PCR test done.  I am incredibly worried about possible exposure for Jenny and for me.  Not too worried about the teenagers, and am certain Hannalore will be fine. One more thing to worry about.  

 Entry 1.    3:18 a.m. Awake.

Entry 1 Woke up at 1.  Almost 3 now.  Can't sleep.  Looked at her CA 19-9 results.     37746.0

 Entry 1    7:53 a.m. Jenny's friend, an attorney, last August offered to shepherd Kenny through all things related to Jenny's illness as it pertains to work. Jenny's friend hasn't followed through. Note to self, never hire a friend to be your attorney. Her repeated inaction means that many things that should have happened last year never occurred.  I, who have some small knowledge of some of the steps, was actively ignored by Jenny when I offered advice.  So, given that Jenny needed to find a placement at SPS, and her friend hadn't done a thing (except get another HR professional assigned to Jenny at my behest), Jenny reached out to Lisa My editor-in-chief. Garberg, leave specialist at the District. Lisa has given Jenny lots of information that really should have been communicated by her lawyer.  She told Jenny to apply and submit for state paid leave (as I did last September). She warned her that her ability to do so was about to go away.  Jenny comp...

Entry 1 5:10 p.m. WebMD is better than all the medical journal articles I have read, un describing the CEA marker measurements use: Your doctor can use CEA as a “marker” to learn more about your   cancer . The test can often help predict whether the cancer is growing or spreading to other parts of your body. It can also help tell how well your treatment has worked and predict your outlook . Happy Hump Day.

  Entry 1     10:31 a.m. Woke this morning at 6:00 a.m.  with today squarely on my mind.  I am sitting outside the procedure room in the Jones Pavilion at Virginia Mason, almost exactly 13 months from the first time Jenny had a procedure done.  She is in with the health care professionals for a tumor biopsy of her liver. The women at the admitting desk tried to chase me away almost immediately. VM would prefer no one be in the building, save the workers and patients. I can't stand the idea of being farther away than necessary. They suggested I not come in at the entrance, but there is no bar, and Jenny needed  me to be with her. Largely empty corridor waiting room. Jenny had  blood work done, got some preliminary pictures taken (both in the Buck Pavilion), and then we walked or hobbled over here to Jones Pavilion.  She told me one of her mets on her liver is the distance between, bending her forefinger and thumb to show the size, about ...

 Entry 1.  5:55 a.m. Something curious has happened since I went out into the mountains. My sleep pattern has changed.  A lot.  I am asleep, and I mean asleeeeep by 9:30 p.m. and up by 5 or 5:30. I'm not loving this, but am loving the relatively sound sleep. It beats insomnia, which has been a companion most of my adult life.   My left knee is still not healed.  As a reminder, it wakes me up in the middle of the night to show me it can lock itself.  I will concede it can and does. This is excruciatingly apparent, when I move to straighten my leg.  The good news is, after between 2 and 5 minutes I succeed in unlocking the knee, and go straight back to sleep.   The other knee, the one without a meniscus hurts all the time, and is popping.  Fun times in September (Also the title of my secret journal--if I had one).

 Entry 1          11:24 a.m.  Big news on the work front.  Jenny has decided it makes sense to go on long-term disability, rather than working.  This pleases me.  She came home half-dead this week, as she went to TOPs to help with buses and lunches.  We will be fine with her being on LTD, and it will allow her to continue to volunteer to do things she loves, to see friends, to travel.  Her friend that bought her the handmade mattress is going to fly up and get Jenny in her private jet and take her to San Francisco for a few days, something that would not have been possible if she had opted to work.   Truth is, she realizes that as much as she would like to work, it is just too much.  It just is. I am glad she has made this decision. It took a long time to get her used to the idea, but she is there, and I am relieved.

“ There is not so helpless and pitiable an object in the world as a landsman beginning a sailor's life . ” --Richard Henry Dana Jr. from Two Years Before the Mast The new chemotherapy regimen has shown a modicum of success.  Here is the latest chart, showing the CA 19-9 cancer antigen measurement, including the most recent from last week, while I was away: This is good news, one hopes, in terms of extending Jenny's life. A drop of 5000 in two weeks has to be good.  At the same time, she is dropping weight.  She is now maintaining around 157-160 lbs. , but that is low.  And her caloric intake, just to maintain this weight is massive.  In other good news, Jenny has finally found a cannabis delivery system that is working--smoking joints. And, it has massively improved her ability to eat--with this chemo generally and significantly killing her appetite. The doctor measured Jenny's CEA (another cancer antigen marker) again last week. Last time, on Aug 12, I was led...

Entry 1      8:52 a.m. I am the only patient in Kaiser Cap Hill urgent care. Got checked in at 730. Saw PA Hana at 745. Waiting for an x-ray since. Ruling out a break.