kvetching up

I was so exhausted last night, as I seem to be every day now. That whole, "It's marathon not a sprint" expression is true, but only half so. It's a marathon all right. But I am sprinting all the way through, at least it feels that way. I was so tired, I barely described what was a remarkable meeting with our friend, a therapist yesterday, whose h usband died in 2020 from PDAC.  Imagine sitting with a friend who just went through almost the same trauma you went through. She is spilling her guts about the disease. She is telling Jenny that she is dying, that she knew there was a turn when Jenny got her stent. She is telling stories about her husband's final days. She is sitting two or three feet from Jenny Willow always makes things better . on the ottoman, her legs crossed, Willow constantly jumping on her lap. Jenny is perfectly positioned in the corner of the sectional, playing with the remnants of her childhood blankey (caressing her blankey is a habit that she...

Entry 1     11:48 a.m. My identity has been subsumed. I don't know what it was before, but what I can say with a certainty, right now I am a nurse's aide, a caregiver, smoothie, soup maker,and chief sheet washer.   Sometimes I feel like I am a docent, leading Jenny from bathroom to bathroom. Jenny's stubbornness, I am convinced, has helped keep her alive. It is a boon for us all, but can also be my bane. Whether it be  insisting on driving, taking stairs, or refusing a walker/wheelchair,  she is a risk taker. The example foremost in my mind is the insistence on eating solid food. It has not worked out so much for her--well not worked out at all--since she had the stent placed. I think since December she has managed to keep down solid food twice. Twice. She has also eaten solid food every single day. Last night it was sushi. My tolerance for vomit after 17 months is precisely nil.  While I admire her fortitude, it is playing hell on my stomach and ...

Entry 1     3:56 p.m. Bifurcated reality. I have been living it for a year and a half. It may explain my ability to clearly understand the contradictory embrace of the belief you need to prepare to tell your children in the next few weeks that you are stopping chemo. AND repeatedly announcing to your erstwhile spouse thereafter that you are going to beat this cancer. Holding both of those things at the same time may seem to the inexperienced as explosive as storing matter and antimatter in the same Tupperware container. I however, am certifiable at this point, sooooo.  . . I am living over the abyss in a straw house with a Plexiglas floor. Whether I am standing still or moving, I am thinking about the abyss and gazing down into it. I  worry about the abyss.  Will the floor fail, and will I tumble down, endlessly? Will I not notice and fall to my death? What will happen when I fall in? Would a parachute help? What if the parachute doesn't work? Where does th...

 Entry 2     12:03 Jenny's way of telling me she is working toward making peace with this, was forwarding this e-mail she sent to Abby's school counselor this morning: " In the next few weeks we have to have the conversation about stopping chemo. Our girls do not know this yet. I so desperately wanted to make it through her high school years so I am trying to deal with my heart break before I bring it more on my girls. I will keep you updated.   Thanks for checking. " This is so terrible, and each moment harder. That notice to the school counselor may just be like trying to see how it fits, if she can make that decision. I have taken the next two days off, was off the last two days, and hope I can get my shit together before Monday, to continue working to preserve my ability to take leave when this ends. My hope that she is working toward acceptance doesn't mean I have accepted this, nor that she has really wrapped her head around it and made a deci...

  Entry 2      3:20 p.m. I am putting this entry on top so it isn't missed. Today we had Jenny's palliative care meeting with Dr. B.  It was kind of a typical meeting, Jenny was giving him a run down on her health, hospitalizations, eating habits. He asked her what her goals are and she told him she wanted to taper off the meds so she could drive again.  He took a deep breath and we were off to the races. "I think it's time you consider stopping your chemotherapy." He said we are at a point where it appears chemotherapy is doing more harm than good, and that if she stops she may be healthier as a result. He also told her that she would never drive again. She needs to be taking the pain meds to control her pain. Even if the pain waxes and wains, she is controlling the pain now, going off the meds would not work. The pain would return. [Let me just say, he should have told her this when he prescribed the goddamned fentanyl, all this fretting and fussing ...

 Entry 1.    6:52 a.m. Jenny threw up repeatedly after 11:30 last night. The acute pain in her abdomen, which had gone away a few days ago, announced it's return by waking her up with a sharp, constant,  stabbing pain. She screamed in agony. She cried. I gave her oxy.  She kept crying, her agony reaching a crescendo about 15 minutes into the episode. I asked her what I could get for her, how could I help? She suggested, half kidding, "a shotgun." She threw up the oxy.  We started in the pain regimen and she threw up the muscle relaxant. She threw up the Dilaudid as well. I had her smoke her vape pen, which stopped the nausea, and she fell asleep. Also, I helped her to the bathroom after she stopped throwing up, and she was very unsteady on her feet, and it was only because I was helping her that she didn't fall.  I was hypervigilant now, unable to sleep for fear she would try again to go to the bathroom by herself. She was and is so unsteady on her fee...

“ Reality denied comes back to haunt .”  Philip K. Dick, from  Flow My Tears, the Policeman Said  Jenny is home. I am so grateful. Discharged some time after noon, she was wheeled from inpatient down to oncology, where I was waiting, having arrived about 10-15 minutes earlier.  Thanking the transporter, I wheeled Jenny to the far end of the waiting area, her preferred place to sit, before seeing Dr. P. She told me a bit about her morning, and we waited. She is gaunt. Flat Stanley could be mistaken for her twin. She is weak. She has hard breathing simply thinking about walking. She was transported by wheelchair to oncology, as I said, which isn't unusual. But she stayed in the chair, when we went to the room,  rising to transfer to one of the seats in the exam room. She managed, unsteadily, to move to the exam table about two minutes after we were put in the room, and fell asleep almost instantaneously.  The RN took her BP. It was 80/50.  She volunteer...

Entry 1 .    1:36 p.m. The GI docs don't think Jenny needs to have her lower GI scoped, her oncologist is in disagreement. He visited her this morning and he told her he wanted her to stay. Her blood numbers are much improved, her BP however, 88/43.  He agrees since she is back tomorrow, she can go home. So, she is being discharged. She passed a lot of blood in the night, but the GI docs seem unconcerned, so.  .  . I will pick her up sometime this afternoon . Also, I am taking tomorrow off to take her to the doctor. Entry 2     9:21 p.m. As the blood thins, the plot thickens. Jenny is still in hospital. I have been fielding texts and calls all day, as I sit and worry and pace and worry more. The texts and calls from Jenny tell me she is coming home, she isn't coming home, she might be coming home. It's her decision, the doctor will decide, it's unclear. This uncertainty went on and on. At 3:18 I check her most recent  blood draw. Jenny's hemoglob...

Well, the last 24 hours have been a whirlwind. Jenny took her sweet time leaving her psychedelic therapy, such that I had to meet her at hospital around 7:30ish last night, more than 2 hours after she finished therapy. She was so weak and in a foul mood, when I greeted her at the ER. She demanded a wheel chair, looking quite glum and snapping at me. I steeled myself.  She did not want to go in, she hadn't eaten all day, she was so weak she couldn't walk, and just didn't want to be there. I get all of that, but I also understand she was bleeding internally. We were taken back in an instant. 7 people came into Emergency Room Bay 12 almost immediately. Getting her on the bed was hard, but she did it. They were poking and prodding and sticking her all over the place as soon as she got the gown on. At first I thought it must be a slow Friday, but then I realized they were worried.  They drew blood and the hematocrit, hemoglobin, and platelet count were ridiculously low. It took ...

 Entry 1     2:24 p.m. This morning I told Jenny I would send an email to the oncologist, letting him know she is passing blood. She had been for a couple of days, and she had reached out to the oncology nurse, who said because it was red it was probably nothing to worry about. Today, after Jenny reported to me that her stool was black and tar-like, I reached out to them. Jenny told me that no matter what she was going to go to her psychedelic therapy, that the onc nurse would just tell her to go to the ER, and she wasn't going to do that. So, I didn't bother checking after she left, what was the point? What happened, however, is that for the first time ever, the RN responded right away, saying she tried to reach me (my phone never rang, she probably called Jenny) and that Jenny needed to get to the ER right away. By the time I checked my phone, Jenny was already gone, in her session and tripping balls. So, I reached out to Murray, with whom I spoke with this mo...

 Entry 1     9:37 a.m. Two trips in two days. Yesterday, Jenny believes the medium who was with us was speaking with her mother, and that her mother and father were both present. Who am I to say?  Today, Jenny will be floating in a most peculiar way as she trips the light fantastic with psychedelic therapy. It will allow her to be more mobile than she has been in months. Speaking of which. Last night at bedtime, Jenny crawled up the stairs to her bed. Arriving there, she was so exhausted, she climbed under the covers with her street clothes on. She began sobbing loudly. I was close behind, having gathered her night time meds. As I pass Leiney sitting on the sectional, I ask her to come up and help. One could hear the sobbing throughout the  house. Arriving at the master bedroom, I leaned down and hugged Jenny, asking her if she was crying because it was so hard to climb the stairs. That was the reason, she acknowledged, and began crying louder. Her bed ha...

 Entry 1     7:50 a.m. Yesterday was Jenny's 51st birthday. Cards and 🌺 🌹🌹🌹 flowers 🌹💐💐🌹poured down like water from a broken water main. Moni organized a lovely party, with a handful of close friends, including Murray, which meant I stayed upstairs all afternoon.  Jenny is beloved. Also, it should be noted the class of women who attended, except for one, didn't work either because they are wealthy (4 of them) or retired (1 of them). Another took the day off from work to spend time with Jenny.  Jenny didn't put on another fentanyl patch Tuesday night, so she was quite lucid all day yesterday. She has not had any pain that has broken through the oxy. This makes me happy. I have been fearful that a tranqued Jenny might be permanent. For now, she is better. That said, when I went to check on her early this morning, she was coming back from the bathroom and either utterly disoriented, hallucinating, or both. I will presume the former.  As she climbed bac...

Just prior to tandem therapy, Leiney had gone to see Jenny and asked me to leave the room. I was leaving the room, but within earshot, when Leiney started. She told Jenny how sad she was about her mom's behavior and her failure to prioritize her children. She talked about the condoms that I found in Jenny's bag, and how disappointed she was in her mom. Jenny was shocked. I left the room, so I don't know all of what she said. As I retreated to the basement to talk to Abby--forgetting she was not home but at acting--I heard Jenny tell Leiney she had had picked up the condoms at a store as a joke. She grabbed them thinking it was funny that the store was giving out free condoms. Who knows? (Given her penchant for lying and cheating, I have an idea I know.) When tandem therapy began, for the first 30 minutes it was uneventful, the standard drill really.  At minute 31 I raised the issue of the condoms. I was calm. I was collected. I told the story of how I had found them, and t...

 Entry 1     3:25 p.m. The rest of the weekend was uneventful. Both guests are gone. Amy left in the morning, Peter at night. Peter and I made dinner, which we ate at the table, with the kids even. Jenny had sausage, risotto and brussel sprouts. Jenny threw it all up, immediately after Peter left, as we were pulling away from Alaska departures. She won't give up. She did manage, one day out of the last week, not yakking up solid food. Last night took chutzpah though. It wasn't a small amount. I can't imagine the frustration with not being able to eat solid food. However, truth be told, I had a hard time driving as she was violently ill.  We carry emesis bags I purchased online last year-maybe a couple gross. We are running very low now, I think.  Wow.  Jenny woke up this morning a wreck. It took my repeated visits in between meetings for her to rise. I kept stopping in, between taking the dogs out several times, feeding them, the 8 a.m. arrival of...

Entry 1    1:21 p.m. So, Jenny had me scrounging through her bag  a few moments ago, looking for something--a receipt--as she and her friends were trying to leave to go to Snoqualmie Falls. She is tripping balls on fentanyl, btw. I get a bag of hers and start pulling stuff out. I shake the bag and can still here something in it. I look inside, find a zipper, unzip the zipper and plunge my hand in to the depths. I put the contents on the ottoman: Sticks of gum, change, 💊💊💊 pills and: She told me explicitly in Sept of 2020, and with no reason to lie about such things, that she didn't use protection with el pinché. When she saw the condoms today she laughed, saying, "I can't remember where or why I got those." I responded, "I have an idea why you may have gotten those. Only one, though."

 Entry 1    8:10 a.m. Sometimes it's eerie, looking out into our yard. Sometimes it is eerie living inside the house. Here is to hoping the two don't decide to coordinate, or worse, compete for which is the creepiest. The fog really does add to the horror show flavor.  Jenny is asleep. Peter, her friend from NYC, is putting dishes away in the kitchen. Amy is upstairs, presumably still sleeping. They have taken care of all the household duties since arriving. Given my level of exhaustion, and adding to that the bout of insomnia I had the night before, I am grateful. Jenny tried and failed to keep solids down yesterday. Where I have failed to convince her to stop trying for now, her friends convinced her with very little argument. Also, she has given up the concept of driving herself around--which will last at least until they leave tomorrow. I am debating whether to accompany them today on whatever small outing they embark upon, or to go out on my own.

 Entry 1.    3:45 a.m. How crazy am I? Awake at 3:45 a.m. unable to sleep. I just binged Killing Eve. I have been awake nearly 24 hours, thinking about how my therapist was lamenting my living in the long emergency. It really has been taxing.  I am not crating los perros locos. This will be the first time Willow has slept out of her box. I should chase sleep.

Entry 1.    11:32 a.m. Willow gave me a wild ride this morning at 7:00, trying to bum rush a neighbor getting into his car. I know her very well now, and had hold of her fur faster than she could react, and soon after grabbed her harness.  In the kerfuffle of wrangling her, I dropped my phone in the grass. I didn't know this at the time, but only realized in an hour later. The best part about that is my phone lay in the grass where I dropped it as the rain fell-it had been falling all morning, why stop on my phone's account?  I put it in rice, at Jenny's suggestion. Jenny left with Moni for chemo about the same time I tried to dry out my phone.  I went to work and forgot about my personal cell. Just after 10, my work cell rings, it's Jenny on the phone, calling to tell me her blood pressure 70/30 was so low they were transferring her to the ER.  Moni took Jenny here, but left to go to an appt around 10. Jeanne, Jenny's escort home, was cancelled.  I a...

Entry 1    4:49 a.m. Waking at approx. 4:39 a.m. to the sound of a the thud of a body falling on hard tile. I ran to the master bath to find Jenny prone on the floor with her arms at her sides, telling me she fell and that her chin hurts. I got her up off the floor and had her slowly lower herself onto the commode. She complained that her chin hurt over and over while quietly moaning "ow."  High on the fentanyl and still half asleep, I helped her off the toilet after she was done using it. I held her steady as she, hunched over like an 80 years old, I walked back to her bed. When we were still about a foot from the bed, she fell forward, this time on purpose, diving into the mattress. As I covered her up and kissed her chin, which still hurt enough for her to tell me that, I extracted a promise that she will call me should she need to get up and go to the bathroom.

 Entry 1     1:28 p.m. If you've ever listened to The Whole of the Moon by Mike Scott, I can say that there were times when I felt that way about someone. I was invariably wrong, driven by myth, mystery and the desire to be in love like in the movies, I suppose. And, I can say with certainty today, the one person that really understood the world in the same way I do, was of little use to me. I ran as fast and as far as I could. Humans, who can understand them. I wander blindly, seeing no better than the blind king. Oedipus discovers his truth and blinds himself. Before that, he was blind to the truth, but could see the world. Is there a middle-ground? Yesterday was a bit much.  Jennifer was here. For reasons only fucking god knows, they thought it would be a good idea to let Willow loose in the yard sans harness. Hijinx, as you have probably guessed, ensued. Last night, I needed extra calming medicine. Remember those birthday cards I discovered while getti...

Entry 1.    1:32 a m. Jenny and Jeanne speaking in hushed whispers yesterday, discussing (health permitting), a foray to see el pinché. I was in the office upstairs as they sat in the living room. They had no idea I could hear them, although why I don't know. They are children of the 80s . What am I to make of this? It gets better--not in the Dan Savage manner--but in the "if it weren't for bad luck, I'd have no luck at all" way.  The organizers of the "babysitters" as Jenny refers to them, has Jennifer Murray slated to come over our house tomorrow today to care for Jenny.  I hadn't bothered to read the schedule, why would I? Other than Jenny's sisters and my sister Jane, anyone else coming over will likely not be welcomed with open arms by me.  I won't make a scene, I don't think.  But I am rather near the end of my tether with these accommodating friends.

 Entry 1.    9:09 a.m. Apparently, while I was out yesterday, Willow escaped the yard, as I have been worried about for some time.  She ran up about 4 blocks and fortunately did not get to a busy road before they managed to trick her into getting back home. The regular daily routine is to let her run out in the yard, sans leash, early in the morning, trusting the invisible fence will keep her in.  Ironically, when they chased her back to the house, they had to struggle to get her to cross the invisible fence line.  They warned us, if she is motivated she will cross it. They also said that problem is rare.  We need them to crank up the feedback on the collar, now that she is horse-sized.  Anyway, I went into the yard with them this morning, which is where the above shot was taken.  Standing in hoar frost isnt something I've done in a long time.  Willow began looking up and out of the yard, the first sign she may test the defenses, so I qu...

Entry 1.    7:57 a.m. I am taking Abby to get her booster this morning.  Then, I have the day in front of me, the world my mussel. It'd be my 🦪 oyster 🦪, but I'm not that fancy.

 Entry 1     1:39 p,m.   I am in a meeting right now. It's 30 minutes.  Jenny and Moni are out, not sure where. Jenny's fentanyl patch has kicked in, and it is quite evident. It has impacted her response time, when you talk to her, her balance, her judgment. Along with the fentanyl, the palliative care doc told her to keep taking her other meds. She was on lots of drugs before, now it is so much I am concerned.  I suggested she not use the fentanyl patch anymore, after she told me the pain in her side is unimpacted by it--the reason she is using the fentanyl patch.  I hope she will reach out to Dr. B about this, but it doesn't require his approval to get off the drug. I mentioned judgment is a big problem. You may recall that Jenny was telling her friends a week ago when she found out that additional help was coming, how she was worried about seeing Eric.  It seems to be top of mind for her, even impaired. This morning, she texted Moni a...

 Entry 1.  11:17 p.m. Jenny used the walker today, to great success. She actually could go to the pharmacy at the back of Bartell's, something unthinkable two days ago.  This is a simple bittersweet success, and she and I are very happy about it. I can worry less about her falling, and she can go places and rest along the way. When I was with Jenny at VM in December, Jenny asked Dr. P what the side effects of GTX would be.  He said she might get dry hands and feet, feel a bit nauseous and could get sores in her mouth. Today, the chemo nurse called to check with Jenny on how the taking the chemo pills was going and to answer any questions. During the call, she told Jenny she would lose all her hair.  Fucking Dr. P. The sin of omission is real.

Entry 1 11:57 p.m. Every minute becomes exponentially harder for this family.  Jenny's shortness of breath and lack of energy is a mystery the oncologist can't crack. Jenny's love for el pinché will live on long after she is gone. The teenagers thinking its too hard to open the dishwasher door invariably put their dishes in the sink adjacent to the dishwasher. Buddy has cracked the code, and now walks through the invisible fence barrier with no hesitation. I have slept alone now for 16 months. The list of things, from petty to profound, that are taxing seems to grow like black mold on drywall after a flood. Jenny did come home with a walker. It is inexplicable why it took so long, when that was the only above board task they tackled while gone for 3 hours.  The walker store, hmmm.  30 minutes away at that time of day.  I'm pretty sure, given her lack of mobility and shortness of breath, she wasn't test driving dozens of walkers, and the line to buy durable medical e...