Of Mice And (Repair)Men
Entry 1 9:22 p.m.
What a long day of troubles.
It was a day of upset and good news. Like Yin and Yang or the spread of the omicron virus and extending work from home for several more months.
First, my friend in Wisconsin had zero margins after her procedure. This means her cancer is gone. They got all of it. Her kids can stop worrying. Her friends can breathe a sigh of relief. Also, fuck cancer. It's the best news I have heard in a long time, and it truly made my morning. Great way to start the day. It didn't get better, although, in fairness, it is hard to imagine how it could, other things being equal.
I woke Jenny at 10. Feeling horrible, her bowl of applesauce from last night, sitting in the bed barely touched, the bowl miraculously not upset while she slept. She looked dehydrated, defeated, disappointed, haggard, worn, spent. Its that look you get when it's 3 a.m. and you've been driving down a strange highway since the bartender kicked you out after last call, sober enough to realize you are lost with no gas money and the cars on fumes. Oh, and your black and you are in the Idaho panhandle. I was a bit concerned. As we were talking about the plans of the day (taking her to the ER and getting our dishwasher fixed), I looked over and saw Jenny's phone was showing the VM. She missed the call. My phone rang next. It was the palliative care nurse, Edi. I put her on speaker, and she sounded as morose as a funeral home attendant at a doubleheader funeral. She said she had read my email from the night before. My email from last night:
3 concerns for which we are seeking advice:
1) Jenny is vomiting her entire stomach contents each night. Now weighs 144 lbs. She hasn't had chemo since November 18. Not sure the cause of this, but it is exacerbating the cachexia. Pls. help.
2) Jenny for the last 5 wks has almost no energy. If she goes more than a few steps she is exhausted and must rest. Standing in a line is impossible. When we came to see Dr. P she had to stop after walking up from the lower lvl of the parking garage and rest, a wheelchair was necessary when we got to hospital. We informed Dr. P. This was post transfusion and her hemoglobin was fine.
3) Shortness of breath and a high heart rate is a problem when she takes any movement, even at times when resting. Her oxygen sats are fine. But her heart rate goes into the 140s with little exertion.
Describing the email in one sentence she says, "It sounds like your cancer has taken a turn." Sigh. "We think you need to come in to the ER." I told the RN that we were planning on coming in, and she said she would notify the ER." I had to stay home for the dishwasher repair and Chris had already volunteered to take Jenny and was heading over.
Her blood pressure, when she arrived at VM at 11:30, was 92/46. I think that's not good. She was so dehydrated, they gave her two boluses of saline solution, and had she stayed, would have given her 2 more. Chris said it had a marked effect on Jenny's ability to walk around without doubling over. The saline also markedly improved her bp.
They ran a battery of tests. Blood work, x-ray, CT, EKG, and who knows what else. Her weight is 143.5 lbs., a record low. Her blood work came back fine. Her x-ray was negative for any pleural effusion (ascites--fluid in the lungs from the cancer), and her heart is fine, no damage. I was worried about that given the symptoms and the fact that the chemo she takes will damage the heart over time. The CT scan was bad. Very bad, according to Chris. I have the information downstairs, Jenny hasn't seen it and I am not looking at it tonight--Chris could barely review it she said. But we know the mets have grown. The tumor is pressing down on her duodenum, making it impossible for her to digest her food in solid form. It is likely the cause of the vomiting. Specifically, the tumor is causing a narrowing in the part of the digestive system where the duodenum connects to the small intestine--the malady is called duodenal stenosis. This can cause all sorts of problems and can kill you, not surprisingly. There is treatment for it. They can insert a stent to resolve the blockage. That will be the next thing we do.
But, there is a catch. They wanted to admit her inpatient today, and possibly do the procedure tomorrow--stenting the duodenum. They weren't sure they could fit her into the schedule. So, she would quite likely miss Christmas. She decided not to have the procedure done on an inpatient basis--she won't miss all of the Christmas plans. Tomorrow we are doing the sing-a-long at our house--thanks omicron--instead of the Central Cinema as planned. Christmas Eve will be at Moni's, and my family is coming to our place for Christmas.
Christmas is central to our family, despite all being atheists. The traditions are sacred to us--a family sacrament. Tomorrow, Jenny and I will go to Hans' deli to get the cold cuts, hard bread, pickled white asparagus etc., for Christmas Eve dinner. I have been doing this for 31 years, Jenny for 50. So, it is ingrained in us. For the first time, she will not be partaking in the meal. This is because she is restricted to a liquid diet. Yes, no more solids. She is heartbroken that she won't have Swiss cookies one last time. I am too. Life is bitter.
Once the stent is placed, she can eat solids again, I believe. We will see. The doctor scheduled an outpatient procedure--but it is two weeks out--and outpatient, given her symptoms--is unlikely to remain so if she can wait that long. They told her if she continues to vomit, she needs to come back in. Tonight, after she arrived home, she had an ensure and some juice. Five minutes later, I was frantically searching for a barf bag. Bless Amazon. We have 100s.
So, we are planning on checking in Sunday afternoon--I don't have any illusions we will make it that long, but if we can, great. Dehydration is the biggest challenge, the thing that will drive us back to VM before Christmas, if anything will.
Oh, there is more terrible news. Her mets are have all grown since December 9. I don't know about the tumor. The full report is downstairs. I haven't the energy to read it.
After she was sick, we waited and I fed her some tomato bisque. It did stay down, so far.
Finally, with all of this going on, she is chatting up el pinché motherfucker. She doesn't think I see her close her signal app as I approach, but I do see it most every time. I love her, but want to remind myself that I stay for her because it makes me feel good to care for her and I need and want to be here for both her and the kids. If she weren't sick, I would run, not walk to the nearest exit--and head for Hawaii or California. I need sunshine in my life. And goddamn it, I love her.
We watched Elf tonight. Abby grumpy on one end of the sectional, Jenny as blue as can be on the other, with Leiney and I in the middle laughing hysterically every few seconds. It is an odd life.
I am going to read the report tonight. I don't think I will sleep otherwise.
Tell those you are close to that you love them. Tell them everyday.
Entry 2 12:15 a.m.
I went and read about duodenal stenting. Well, life expectancy on a stent is radically shortened, and it doesn't appear you ever eat anything but a liquid diet for the rest of your short life.
Entry 3. 12:41 a.m.
The repair guy found a desiccated mouse in the top of the dishwasher. It died, clearly some years ago, clinging to the wires of the fan that pulls wet air away
Entry 4 1:01 a.m.
I am awake with the dread of the coming days flooding my thoughts as Natalie Merchant sings in the background. Her voice is the warm blanket I am clinging to in this waking nightmare. That anyone should suffer as Jenny has and does is so painful, is so terrifically horrible. Knowing that I can do nothing to stop it has made my eyes well-up with tears a few times today. I am at a point now, where she has thrown up so much, that the mental protections I built up to not let it bother me has worn away. I struggle to be in the room with her when it happens. It comes rushing out through her nose and mouth, I don't see it, but she tells me. Each time I think her suffering can't get worse, it goes to 11 on a scale of 10. I have worked so hard to make her days better, to make them brighter for us all, to little effect. Even now I wish I could trade places with her, make it all go away and make sure the girls have a mother. I don't want them to travel so soon in this world without that anchor. I am not even a shadow of their mother, not even the faintest echo.
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