It was a quiet weekend of pain management. And nausea.
I realized after a week of exhaustion, all these things people have said forever about taking care of the caregiver. I have a new respect for my little brother, who seemingly tirelessly treks to our mom’s house several times a week to do that in my distance-based absence. Especially when he was there when she fell and cut her leg open on the side of her bedframe resulting in 6 weeks of old-people-hospital-hell a few years back. It seemed like I could only watch from a distance.
Point is, I never really got that close to “weekends” in the secular manner, given that I have always just worked when the work needs to get done, more or less, rarely or ever driven by this strange weekly shut-down that is apparently normal for other people. Especially as a church musician, frequently Saturdays and Sundays are packed with extra work that requires diligence, focus, and energy. On Monday sometimes you just want to sleep and sometimes you can. Anyway, I hammered hard all week on behalf of my beloved Kathy and on Saturday it seemed like an eerie pall of nothingness and silence where there was nothing I could do. No doctors’ staffs (staves?) I could call on to keep moving things forward.
Can I just say that was weird?
I spent the weekend at home with a suffering mate who did not feel like doing much besides experimenting with staving off all the flavors of nausea induced by a cornucopia of pain medications she had been given. I made tiny bits of many kinds of food Some of which worked and some of which didn’t. Washed a lot of dishes. Continued to build my respect for domestic responsibility.
Last week we finally (finally) got the biopsy onto the radar, and by pushing of course, we got it moved up from the proposed January 6 to the 60% sooner December 26 while the surgeon was on call at the hospital. Then this odd weekend of silence. Kathy did not play or conduct on Sunday, but this was not a problem as many stepped up to shoulder parts of the burden. The depth of resources to help her get through this makes one humble indeed. She rested. She indulged in further experiments of moderating her own medications and Sunday afternoon she began to feel like, on the whole, she felt better when taking less medicine.
Naturally. It’s frustrating as her caregiver to see her choose to miss a dose to see what will happen. Kathy has always been a rebel – in her own way I’m sure the pain nurses will give her an earful but I also know they are no equals when it comes to Kathy Stewart. Just saying.
Yesterday (Monday) [Day 24] started off with calls to four separate doctors’ offices – the oncologist, the surgical oncologist, the gastroenterologist and the pain specialist. I’ll spare the details but they all required checking in for various threads of this unwieldy story. We checked in. Got the consult with the pain doctor scheduled (not the procedure of course, naturally). While we were at it, we got the 3rd needed scan scheduled, by going to the scheduling desk in person and managing it verbally. That will be Friday. Excellent (listen to me – now I call “excellent” something which three weeks ago was an unconscionably long ways out).
Megan and I were out doing errands (getting the car ready for the upcoming road trip, and ingredients for our foods for Kathy’s family Christmas gathering). The Mayo Clinic called and we had another good conversation about our upcoming plans. It turns out I pushed so enthusiastically on all that up there (i.e. Minnesota) that they had two Kathy tracks and wanted to make sure there were really two tracks – they had her down for cancer treatment and also gastroenterology treatment. I had to explain all that, but I was talking to someone who understood what I was saying and had the authority to rein things in. Among other things she said, as I figured all along but nobody had said in so many words, that even though they needed all the scans and reports and tests from Oklahoma, that it was pretty normal for them to do them all over again when we get up there. I chalk that up to the “If you want something done right you have to do it yourself” school where many or all of us reading this were raised. I smiled quietly to myself.
The other thing was that they already had her tentatively scheduled for surgery to do a stent – which told me a lot – obviously they are at least making a little room for a most likely finding when Kathy does finally get up there. Because I was driving, I did not write down nor can I remember the exact stent but the most salient part of the discussion was that the surgeon who does the stent was the only surgeon there who can do this stent because it is a very complicated and quite dangerous undertaking. Which of course is one of the reasons you decide to go to The Mayo Clinic – because they will do things your Tulsa doctor has already told you are not possible.
So yeah, it’s roller coaster of medical greatness, come to settle in nicely for Kathy’s care plan. And of course the total, complete, and hugely condemning reality of Big Healthcare is – guess what – (you know this already) – we still have not had the biopsy let alone got results back. Thank God the people in Minnesota are free to exercise common sense. There is way too little of that going around down here.
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FLASH
OMG the dominoes at Mayo have begun tipping! I can’t say it is completely unexpected, but I think it is really good news. After this morning’s very long interview, technically her first appointment with Mayo, they called back about an hour later, and offered to schedule Kathy to do their own endoscopic biopsy on Thursday January 2. Now she has three (3) tracks, the new one with their Hepatobiliary and Pancreas Surgery Division. We are getting the ducks lined up but it looks like we drive north Saturday, then walk in the front door at Mayo on Tuesday. They will spend the day doing the initial work-up, to be best prepared for the biopsy Thursday (Wednesday being New Year’s Day). Whether we come back sooner or later will depend on what they find. We are anticipating multiple trips regardless of what they conclude. I promise to write while we are there. It feels good to have this set in stone now.
/FLASH
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Tonight is Christmas Eve. Musicians everywhere are rising to the occasion, and Kathy told me last night when we discussed whether to take William or Marjoleine or Taylor up on their offers to come play for her, she says, “No, I want to try to do it myself.” Under the circumstances, we have a depth of resources uncustomary; we told William to enjoy Christmas Eve singing with his mom, we told Marjoleine to spare herself the long night of driving up from Tulsa, and we know Taylor will be present reuniting with his family, and can seamlessly dovetail if needed. We have the most loving safety net ever. Things will be fine. Then tomorrow we will enjoy Christmas Day.
Silence speaks volumes: Not a single word from anyone about my crazy rambling about synchronicity, which by the way I learned by watching Ancient Aliens, a favorite of Kathy’s. The family that conspiracy theorizes together (space aliens, multiple universes, etc) finds a place for miracles and other such unexplainable phenomena. On that thought I will close with the first of two favorite poems of the season, gleaned of course by singing them over the years:
In the bleak mid-winter
Frosty wind made moan
Earth stood hard as iron,
Water like a stone;
Snow had fallen, snow on snow
Snow on snow,
In the bleak mid-winter
Long ago.
As culture embraces legends like a warm fleece (thanks John), note that it only snows in Bethlehem a little, once every few years, and it usually only sticks for a day.
People are strange and wonderful.