kvetching up

My 16 year old was incredibly sad not to be carving pumpkins today. My 19 year old was excited about carving them.  I didn't get pumpkins yesterday, I forgot. Abby also failed to get them, her plan to go to a pumpkin patch got changed.  I went to 4 stores, before finding beautiful pumpkins at PCC. 5 bucks each, they were priced to move. I put on HalloweenTown, and the girls are as happy as pigs in shit, which  means I am too.  Abby's freehand witch carving. Leiney's traditional jack- o-lantern.

 Entry 1.    12:45 p.m. I have a post I am working on from yesterday, but thought this bit of an update is called for.  Up at 5 with the dogs.  Jenny came down just before 9. Leiney and I had been hanging out talking for about an hour. I got up and made Jenny's coffee and served her pancakes that Leiney had cooked. Jenny ate. She is cranky in the mornings now. Coffee cranky? Cancer? Doesn't matter. Just cranky. It's new, and given you wouldn't want to deal with me decaffeinated, I get it.  She remarked on her mood herself.  Afterward, she repaired to the master bath to soak in the tub. After she was in, I'm so fucking glad she doesn't have a little bell to pick up and ring, she texts Leiney asking her to send me up.  I go up, and she needs soap and a razor. Things three feet from her.  I get them, and don't remark on the ridiculousness of the expectation. I go downstairs, hang out with Leiney until she leaves at 11, and proceed to clean the d...

 Entry 1     12:03 Author David Rieff on his mother, author and public intellectual, Susan Sontag's cancer: " But then, she, too, was surprised when the doctors in Seattle came in to tell her the bone-marrow transplant had failed and her leukemia was back. She screamed out, "But this means I'm going to die!" I will never forget that scream, or think of it without wanting to cry out myself. And yet, even that terrible morning, in a pristine room at the University of Washington Medical Center, with its incongruously beautiful view of Lake Union and Mount Rainier in the background, I remember being surprised by her surprise. I suppose I shouldn't have been. T here are those who can reconcile themselves to death and those who can't . Increasingly, I've come to think that it is one of the most important ways the world divides up. Anecdotally, after all those hours I spent in doctors' outer offices and in hospital lobbies, cafeterias and family rooms, m...

 Entry 1     9:12 a.m. "Even with the utterly lost, to whom life and death are equally jests, there are matters of which no jest can be made."     -Edgar Allen Poe, The Masque of the Red Death Last night in therapy, we talked death. We talked life. We talked cancer. We talked and we talked. Jenny cried. It was an entire session dedicated to this topic or these topics. It was not intentional or planned, but because I brought it up at the beginning of the session.  Jenny, as my last entry noted, was despondent for a time yesterday, suffering from uncontrolled pain.  She expressed her desire to stop treatment.  It's a regular occurrence, but hard for me. It isn't time to contemplate that, and I know she doesn't mean it. I also know that should or when she arrives at that point, I will support whatever decision she makes.  In the interim, I struggle with how to deal with these declarations. My tactic is to say nothing and comfort her. It isn't pe...

 Entry 1     9:52 a.m. " The discretion of a man deferreth his anger; and it is his glory to pass over a transgression. "     -Proverbs 19:11 View from the master bedroom 10.26.2021 I have let go of my anger again, finally. I, like each of us, am a work in progress. It feels like a tremendous weight off of my shoulders, but I suspect the anger isn't too far away. I will just keep moving ahead one day at a time, and keep reminding myself that caring for oneself demands that I remember that this too shall pass.   Jenny and I spoke with one of the doctors on the care team today, Dr. B, about yesterday's visit to the ER. He said that the collapsed lungs are actually not that at all, but a totally normal occurrence when a person is sedated and laying flat for the CT. This is a relief beyond words.  Before knowing this, I managed to sleep pretty well last night. The dogs didn't wake me until 5:15, which I could be annoyed by, but instead am viewing...

Entry 1.     9:47 a.m. I didn't sleep well. Listening to a podcast on David Berkowitz can mess with your dreams. When I woke at 3:06 a.m., I was worried about Jenny and her pain.  I stewed for quite some time before going to check on her. She was ok, breathing seemed normal. But, I was worried.  I stayed beside her until 6:30 when I had to tend to the muttlings.  Leiney came down soon thereafter and  was lying on the couch, when Jenny appeared at the top of the landing and said her pain was worse.  In fact, the pain was so bad she walked stooped over. We are at VM. We have been here since 8. They saw her before 9, gave her some pain relief a.k.a. Dilaudid, and then ordered a CT. We have been waiting since. It's 10:20ish now.  Jenny is in and out, the painkillers causing her to hallucinate. "Honey, did I forget your birthday? I'm sorry." We just had this exchange: Jenny: "I wonder if I can snore?" Me: "I am positive you can snore." Jenny: "...

 Entry 1     9:41 p.m. What a day .  Our huge living room windows that look out on the wooded portion of our property were captivating with the hundreds of bright yellow maple leaves moving in the air like dancers in the windstorm. At times it almost seemed like there was nothing out there except the drifting leaves. What a great place to live. I got to spend a lot of time with Leiney  and Abby at alternate times today. Leiney and I are watching her favorite YouTube political analyst and laughing a lot. Abby and I went and did a little shopping at the grocery store this evening. Then around 8 she announced its pajama day tomorrow and she needed to go buy pajamas at Target.  So, I dutifully accompanied her, keeping my eyes shut most of the drive there and back. Riding with your 16 year old is not for the faint of heart.  Jenny was debilitated much of the day. She was awake in the night with stomach problems after taking her night time meds and a full Xa...

Entry 1 3:31 p.m. I have so many questions about Zagor . Three years ago, when we were traveling through Europe, we stumbled across this dilapidated bookstore on a Venice canal.  It was cross between Powell's, The Strand, and a typical hoarder's house, complete with cats. The girls and I were in heaven. I think of Zagor, a comic I found in the stacks, on occasion because comics seem to me to be a peculiarly American form. Zagor looked more like a character from Harvey Birdman than from any comic universe.   I am funny in that while I am fiercely protective of the past, and had a habit as the kids were growing up of taking a ridiculously uncountable number of photos, I don't revisit them, with few exceptions. The kids have never really seen the photos of their birthdays, camping trips, sleepovers.  They have never asked.  I'm not sure why I was so intent on capturing the moment, and why it stopped.   Jenny, as predicted, is feeling better today, and ack...

Entry 1     9:38 a.m. " Have you not done tormenting me with your accursed time! It’s abominable. When! When! One day, is that not enough for you, one day like any other day, one day he went dumb, one day I went blind, one day we’ll go deaf, one day we were born, one day we shall die, the same day, the same second, is that not enough for you? [ Calmer .] They give birth astride of a grave, the light gleams an instant, then it’s night once more."     -Samuel Beckett, "Waiting for Godot" Jenny is attached to the chemo pump. She sobbed uncontrollably much of the morning, and intermittently this afternoon and evening.  I was in meetings this morning, so apart from making her breakfast during a break, I was upstairs working in the office. Tonight she said the thing she says on day 2 of the pump, "I don't want to do this anymore." I gave her a hug and some words of encouragement--that tomorrow will be better and the day after she will be fine.  She knows. S...

 Entry 1 12:44 p.m. Jenny is at chemo with Moni, as planned.  Her CEA clocked in at 31.7 up from 26.6, a 19.7 percent increase two weeks ago. It is a 178.1% increase since August 12, when they first started tracking this antigen.  The CA 19-9 isn't back, and I don't know if it was measured today.   I wish we could go back to a time when we were just mad at each other, or generally unhappy in the relationship. No cancer, no affair. Nada. As always, this day is terrible. Jenny wishes she could quit chemo, but dutifully goes to get the poison pumped into her veins, knowing the alterative is not an option right now. She will be miserable. I was informed by Moni that around week 8, which is the next round, per the doctor, there will be side-effects of the Folfox, likely severe. The neuropathy is so grave today her dose is limited to 80%. 

  Entry 1    9:10 a.m. He had bought a large map representing the sea,    Without the least vestige of land: And the crew were much pleased when they found it to be    A map they could all understand.     -Lewis Carroll, "The Hunting of the Snark" Absurdity. Futility. The inexorable need to make a mark. The inescapable fact of death. I run to philosophy when I am lost, hoping it will provide me with a path to follow. Hardship, disappointment, loss, we all face these things. I believe, like Camus, that if we embrace the absurdity of our condition, we can find a purpose in a life devoid of meaning, in an unregarding universe. The contracts I negotiate today will be replaced when I have left, and will go on being replaced and forgotten long after I am gone, until the world is drowned in the next diluvial event. If I can find acceptance in this impermanence, this markless life, I can shed the crushing malaise, that is always waitin...

 Entry 1     10:49 a.m. “When a man, however passively, becomes an obstacle to the fulfillment of a woman's desires, he becomes an odious thing in her eyes, - or will, given time enough.”  ― Theodore Dreiser, Sister Carrie Jenny's friend with PDAC is contemplating a second opinion, and sent Jenny her latest CT scan. Stephen King would quit writing novels after reviewing it.  That said, as Jenny and I walked through it, it allowed for a very explicit conversation about the limited nature of options that will follow, should the disease stay its course.  Jenny said to me that if she ever goes on hospice, she would volunteer for any experimental surgery that is out there.  While there isn't any such thing for a person with metastatic PDAC, which I pointed out, I also said that should something arise, the last person who would be considered is someone on hospice. You are so sick by then, you would not meet the rather important consideration of post-sur...

Entry 1          9:09 a.m. " Why he that cuts off twenty years of life  Cuts off so many years of fearing death. Grant that, and death is a benefit."     -Wm. Shakespeare Jenny's third friend with pancreatic cancer that she has made, is likely going on hospice today. She has to decide. There is one more drug that they can try with a 10% chance of working .  By working, I presume it means slow down the process of dying, because there is no cure for stage IV metastatic pancreatic cancer.  Jenny spent much of yesterday again pleading and lamenting, and ultimately denying her life is foreshortened by PDAC.  I don't think the latter is as meaningful as it once was, after the visit to the UW Liver Clinic, and after watching 3 people she befriended with the disease, each around her age, dying or rapidly heading toward the final reward.  But I am wracked with sadness, for her pain, for her fear, for the battle ahead, and for the eventu...

 Entry 1    3:17 p.m. My family is coming to Sunday brunch every other week. Jane, Mike, Sarah and Hanna came today. Halloween is magic again with a 5 year old among us.  My sister and niece brought the entrees.  I went to Bakery Nouveau, yes there is one nearby, and got pastries.  Too. Many. Pastries. I am not sure if I am being callous, but with only adults at the table, I discussed the visit to the UW Liver Tumor Clinic with the assembled. I described them as saying they have nothing else to offer and noted they are much clearer about the state of Jenny's disease than VM. Jenny started sobbing. My sister asked, and rightly so, whether Jenny wants to know more clearly what is going on.  It's a fair question. I want her to understand. But, am I putting my needs in front of hers? She has been sobbing off and on ever since.

 Entry 1     7:48 p.m. The dogs generously let me sleep until 5:30 a.m., bless their waggity tails. I am finding Willow's barking, exacerbated by Buddy's amen corner yip yipping, particularly vexing this morning. Th ey make up for it by being so damned sweet and funny.  Today I will tackle the remaining 6 boxes or so in the garage.  I say this every weekend and hope to follow through today.   I hadn't thought of it until now, but it seems unlikely we will go to the Carpinito Brother's Halloween corn maze this year, the end of a tradition. It brings back this strong memory of my mother, weakened by the effects of chemo and suffering from neuropathy, sitting in her car and waiting, while we took a 5 year old Leiney and a wee Abby to a pumpkin patch and corn maze in Everett.  She was sick, forlorn, and devastatingly sad, waiting for us to finish the excursion. She wanted desperately to participate, cancer got in the way.  It is so vivid, un...

 Entry 1     9:38 a.m. I slept poorly. In bed around 9ish, asleep after 3, then up again (thanks to Willow and Buddy) before 6. Despite this, I am ecstatic that Friday is upon us. I will sleep tonight. Jenny has not run away, I am keeping my distance once again, which just feels right. No big plans this weekend. I committed to getting Leiney a bluetooth enabled printer, and Abby and I took care of that last night, which frees up both Saturday and Sunday. Leiney is coming home, obviously. She will be working today and tomorrow, but I expect to spend time with her. 

 Entry 1     11:11 a.m.  Before 9 last night I went to bed. I was tired. Jenny got home from Sequim, and we had promised to take Abby to dinner to celebrate her taking the PSAT, and we went to a Thai restaurant and came home. It was fine. I wasn't chatty, but not sullen. Things got weird when we got to the restaurant and Abby and Jenny took their seats across from each other in the booth, and as I sat down next to Jenny she said to Abby, "Do you want me to sit by you?"  Abby declined.  I had hesitated, although neither of them noticed, as I approached the booth, and had decided to sit next to Jenny rather than escalate right there with Abby present. I didn't want her involved in the nonsense.  We chit-chatted during dinner and on the way home.  The Grassy Knoll We got home close to 9. I'd been up off and on since 3 a.m. thanks to the dogs, and was ready to crawl into bed, and I did just that, laid my body down.    Jenny was in the b...

 Entry 1     2:21 p.m. I had to go to my first in-person meeting at work today since COVID-19. It was not  a big deal, but I did not like it. I felt uncomfortable, even with a mask on. I left feeling no less alienated than before I went in. No one did anything untoward, in fact they are all quite lovely, but I am in a funk and in a job that I find mind-numbing, and yet am stuck in for a while. I don't dare change jobs.  

 Entry 1   2:22 p.m. It's true . But I am getting in front of the story.   This afternoon we met at the UW Liver Center.  We parked in the Triangle, and it brought forth memories of the days my mother struggled against death in futility -30 days seemed so long and it wasso many years ago now.  It made me nauseous, as if this was day 31 of my mom dying, instead of a meeting for Jenny.  I steeled myself.  The Liver Center is located in the surgical center complex with its massive atrium covered waiting area. It has huge windows in various sizes of rectangles and squares to brighten the room with the sun, but they did nothing to lighten the mood as we waited. After being led to the room by an M.A. at 12 on the dot, we sat and worked on a crossword puzzle together.  Jenny, since leaving home, was almost sick with nerves.  We finished the crossword puzzle, and she took my arm and told me she was scared.  I was scared too, because I ...

 Entry 1     10:29 a.m. Today we go to the University of Washington Liver Tumor Clinic to see what, if anything they can do to help Jenny. When she told Dr. P last week, he said that he didn't know what they could do because of the circulating cancer cells--microtumors that accompany PDAC. Even if they can fix the mets on the liver, that won't solve the larger problem of pancreatic cancer. We shall see. They told her sister that they could help Jenny, so it is worth the consultation, at least.  Today her friend with PDAC gets her scan results back, which Jenny is convinced (with good reason) will not be good, given her ascites.   Can we have one day with good news?  I did manage to cheer Jenny up yesterday by showing her a report noting that while the mets have all increased in size, the two new liver mets are necrotic, meaning the chemo killed them.  So, that is a win.

 Entry 1    9:02 a.m. I saw the rain dirty valley You saw Brigadoon I saw the crescent You saw the whole of the moon  -Mike Scott from " The Whole of the Moon ." Willow has taken to whimpering to be let out of her cage well before 6 the last several days.  So, I am awake well before 6. Dealing with dogs is generally a treat with one exception. I need coffee to function, so these early morning Willow risings are tough.  I generally try and let them out, take them outside, and then recrate them until 7.  That strategy worked when she was pulling this early rising a few weeks ago.  Now, it just leads to louder whimpering.  So, what do you call coffee deferred?  I call it a recipe for crankiness. Jenny woke at 8:20 or just after.  She came down the stairs sobbing. Her friend Patty, she made on an internet pancreatic cancer board a few months ago, and with whom she has been journeying, texted her to tell her that she has ascites .  ...

I became a sucker for Robert Smith when Kiss Me! Kiss Me! Kiss Me! was released in 1987. I was 20, and 6 albums behind. I got the deep catalog around 1999, when Napster, coincidentally, was in existence.  I'm sitting alone in this big house listening to angsty 80s English pop. Leiney has headed back to Bellingham, or is after she finishes work. Abby is at a concert at The Vera Project.  Jenny is heading home from dinner at Ivars with her NY friends. Last night I learned the woman married to the hedge fund guy just bought Don Imus' apartment on 67th for 10 million bucks and an apartment on the main floor for their kids to hang out. 10 million apparently is a steal, and they have to do massive remodeling. Money 💰 🤑.  Must be nice. I spent the afternoon hacking at blackberry bushes.  I hired a guy who finally came last week, but he did a shit job.  So, I am continuing the work.  The bushes I hacked at today are about 12 feet tall.  I want a buffer from...

Entry 1 9:42 a.m. Let me first say that Jenny has, no matter who it is you ask, the best PDAC oncologist there is. Period.  He is like the little French chocolate, non-pariels, of doctors.  That said, yesterday was again a day of frustration for me. I have so much concern for what the doctor said to us, and so many questions.  To raise those issues with Dr. P., who comes off as Moses sans beard, holding his stone tablet decrees, and me down below worshiping a golden calf.   Jenny's CA 19-9 went up: The doctor said it went up just a bit, nothing really to worry about. Really, he said, your cancer is stable, "maybe a little worse."  But stable.  The CA 19-9 numbers are see-sawing, but the general trend is through the roof.  42845.1 U/ml as of yesterday. Baseline, 14 months ago, was 846 U/ml.  So, its 42k higher. Jenny, as is her way, won't look for another week or so, and I, of course, per her wishes, won't share the information with her. Jenny...

 Entry 1     5:41 a.m. Awake since 3, worried about tomorrow. The scan results. The CT results. The treatment plan moving forward. It will be a very long day. We don't see Picozzi until 2 or 2:30, which means chemo will start an hour later, we won't be home until 6 or 7.

 Entry 1   9:35 a.m. The rain is pouring. The dogs loved it. This is a change for Buddy, but the enthusiasm of his "little" sister, who prances, cavorts, wiggles, waggles, jumps and runs in the yard regardless of the weather, kept him out there with his tail wagging hard.  It is nice to have such levity. Bookends.  Jenny, my poor sweet wife, lamenting death last night, and begging for her diagnosis not to be real this morning.  Expressing dread about her upcoming scan, she told me she doesn't want to die, with the same plaintive voice she uses every time.  This is wrenching.  Two more days and we will see Dr. P., get the scan, discuss the pathology report, and have to decide how to move forward. I expect we will continue on this regimen.  Jenny is worried her cancer has grown or spread, or both. I have no idea.  I just know that her endurance, despite her best attempts to fight it, continues to wane. She continues to fight. She just said...

 Entry 1    3:48 a.m. Why am I awake?

Busy day.   I woke four times last night. The fifth time I woke it was 7:15, and the dogs were restless.  I dressed and took them downstairs to go outside (yes, I am back upstairs sleeping in my bed). I used to enjoy the quiet solitude of early rising. There is less of quiet than rest these days.  The dogs frolicked (Okay, Willow frolicked, Buddy just doesn't move much nor fast) in the yard, relieved themselves, and raced back into rhe house for breakfast.  Willow is on a special diet of rice, beef and some kibble, because of course she is.  She barks with excitement (or to move me along) as I prepare this goulash.  As soon as they finish eating, Buddy's routine is to run to the door and ring the bell. He didn't disappoint this morning.  I again let them out, sans leash. Willow ran the length of the yard, circling the picnic table, and did it again for good measure.  As she was running up the hill toward the door, she saw a woman and her 4 t...

Entry 1      10:00 a.m.  Every day, darkness . Today I went to wake Jenny and found her sobbing, finally mourning for the loss of her mother and for her own impending death. She vacillates more between hope and despair, but the last few days, she has been despondent, telling me over and again she doesn't want to die--asking me what can be done to stop this. I have nothing to offer. She isn't really expecting me to give an answer, but she doesn't know who else to ask. The doctor, on Thursday, will he offer hope? If so, is it real?  Should she ask him directly, "Is this going to kill me?" We all know the answer, but hearing him say it, would it accomplish anything? I wake everyday thinking about her cancer, thinking about how sick she is. I put on my pants. Find my shoes upstairs, by the front door, climb a second set of stairs and go let the dogs out of their crate, and then take them to the bathroom. Each morning I worry, sick and weak as she is, that she may ge...

Entry 1   5:02 p.m.    "It may not get better , but it certainly is going to get worse."          --Dr. F, my therapist. Friday morning with Buddy, coffee and the maple tree view. Whoo. More productive at work than I have been in a while, and yet, I feel like I am carrying an an anchor on my back. It is tough. Doc is afraid I have succumbed to depression, and has urged me to seek help. Thanks, Doc. While insightful and lovely to talk to, I get about as much therapeutic help from her as I do watching Dr. Phil.  Sigh.  I have moved to feeling listless. Unmotivated. Last night's word salad journal entry aside, I speak about as much as a chair when I get here.  I hate it. Dr. F. did rightly point out that while things may or may not get better over time, in the short run they are certainly going to get much worse.   True.  We did discuss, besides my gloom factory mind, that it is hard to know whether knowing or not ...

Entry 1     3:28 p.m. Jenny is lucky--to the extent anyone with stage IV pancreatic cancer can be identified as having good luck.  This is month 13, soon to be month 14. The number of chemotherapy treatments she has had now are somewhere around 30.  She is tolerating it.  She was out all day today, again.  Went to her acupuncturist, watched the service for her friend Lien who died of pancreatic cancer some days ago, picked up her Chinese herbs, was home briefly, and now is out with her friend Jeanne.  Lien's illness went fast, and is much more typical of this illness.  I am grateful and happy for all of the luck we have had, with regard to her longevity throughout this ordeal.   I read journal articles occasionally, which is essentially several times a week.  I stumbled across an article quite recently which reinforces what I mean when I say Jenny has good fortune. Here are relevant excerpts: Porto Biomed J.  2020 May-Jun;...