Date: Thu, Jun 17, 2021 at 10:09 PM
Subject: chapter 21
Friday, 6/11/21 we recorded temperatures of 38.2, 38.0, 38.2, and 38.1 over a two hour period in the morning and talked to the clinic nurse about it. She asked lots of questions but finally said to keep an eye on it and call again it went up. 16:29 it was down to 37.9 but and hour later at 17:39 is was 38.4. Called again and we were told to go to the ER immediately. They would be expecting us within the hour.
We had talked about putting together a "ditch bag” like the ones sailors keep handy in case they have to abandon ship, but hadn’t done so. Last trip to the ER we had left behind many things we wished we had brought, like chargers for our phones. Never expect to not come home in a few hours for some reason, but that has only happened once. Every other visit has led to admittance. So we quickly gathered up a better collection of supplies than last time and called for a Lyft.
Arrived 7PM to a waiting room full of other sick and wounded. He’s here because he has a fever and no immune function to speak of – what they call a neutropenic fever – and surely an ER waiting room is among the worst places to be. But it was only a few minutes before they took him inside for an initial evaluation which indicated that he could wait his turn – but away from the risks. They didn’t have an exam room for him but they parked him in a less used hallway for the wait. After a while it occurred to us to ask permission to use the gurney parked next to us. Granted. Relief!
Eventually he was moved, gurney and all, to an exam room and the usual assortment of tests were begun. At 1AM Saturday, the 12th, there was finally a bed available up in 8SA and he was admitted. I had to go back out to the waiting room until his COVID test came back – not allowed upstairs until then. Last time they would not even allow me into the ER exam room until the test results came back, but not this time. 2AM I got word that the test was negative and I was free to join him. Dave had been welcomed to his room by a nurse in hazmat suit, due to Covid risk.
Then came yet more vitals and IV antibiotic and paper work and I don’t remember what all, but it was 4AM before we finally went to sleep.
6AM, thyroid med. 6:30 ordered breakfast. 7:30 he sat up for breakfast. Ding ding ding ding ding. . . . What the heck is that? Turned out it was the bed alerting everyone that he was getting out of bed. We expressed astonishment. He was “independently mobile” as even the placard at the head of the bed said. He did NOT need to be chaperoned. Their response? Turned the placard around to read “chair and bed alarm . . . “ Still not clear on what triggered the caution – something about his admitting that he is cautious when walking due to the neuropathy? Or maybe "low blood pressure” which is normal for him? Don’t know. He moved to the chair and they left. I asked him if he wanted me to shut the alarm off. No. Humor them. It happened to be shift change at the time and a different nurse was taking over. After she observed him walking around, she agreed that he didn’t need the alarm and turned it off and the placard around. Bless her!!
11:30 he got the chills again, similar to the 7 during the last hospitalization, except milder. Still no fun, especially with the memory still fresh. At 12:05 I called for the nurse to document his temp since I wanted to log the temperature cycle relative to the chills and sweats. 20 minutes later, no response, so I took it myself. 38.7. Another ten minutes and the nurse came. 39.3. That’s a fast spike. It stayed there for an hour during which he vomited.
Later that afternoon Dave awoke refreshed despite being soaking wet and chose a shower (the first since Sunday) instead of a wipe down, after a late lunch. Back in bed 18:50. Shift change, 19:30, we showed the PICC dressing to the new nurse as it appeared to us that it needed changing. She was not impressed, said it was not due for a couple more days but that she would change it in the unlikely event that she had time. My first impression of her was not a good one.
At 20:00 hours Dave got the next attack of chills. One minute fine, the next shivering and shaking. Cara dismissed it as nothing more than a panic attack that could be ridden through with deep breaths and distracted attention to pressure between finger tip held to thumb tip. Yes, the body was feeling chilled, but the shakes were a severe over reaction due to fear. There was nothing physiological to cause the shivering. Wow!
So for the next half hour(?), I spooned with him, massaged him, coached him to breath deep, pointed out when the shivering lessoned, pointed out the lengthening breaks between waves of shivering, encouraged him, praised him. And, glory be, success! It took effort and time, but he was able to get it under control – despite being dubious about the likelihood of success.
Sea sickness, once started, does not respond well to being told that it is all in one’s head. Nor does claustrophobia. Why should this be any different? On the other hand, he did have experience with controlling pain and bleeding using Silva meditation/mind control. Except, that was a rusty skill and crisis is not the best time to practice. Nothing ventured nothing gained, however, and he gave it a go and succeeded.
My part was also something that I have never succeeded in doing before – coming up with a monolog of encouragement. Even as I was talking I was thinking, Oh, Christ, how can I say things are getting better when they’re not? The first time I was about to say “See, you stopped shivering!” the next wave hit before I could say anything and the pause was so brief that I wondered if it was my imagination. Interestingly, it did not feel like it was me doing it. I was more of an observer. Just as it was not me buying self help books back in South Africa after Gerhard died.
Two hours after taking a Tylenol, his temperature was 39.2, so we weren’t having an affect on the physiological manifestations, but minimizing the shivering was a huge plus nevertheless. Midnight came and more blood for cultures looking for the cause of the fevers even though they are often? usually? not found. It’s only 23 hours since admittance.
Sunday the 13th:
4:30 AM a bag of Red blood cells as his hematocrit was too low. An hour later, blood still infusing, another attack of the chills. We calmed the shivering and he was able to go back to sleep for a while but awoke shivering yet again. They settled in before he asked for help so they took a little while to get under control, but a lot less than the previous bout and were milder.
Unfortunately the blood infusion finished before the fever broke, so the post infusion vitals were high. BP 144/?
Temp 39.2 so they had to, per protocol, report it as a ‘blood reaction’ even though it fit the pre-infusion pattern (since the pattern could mask a problem with the blood). They also had to do another set of cultures in case he had caught something from the blood. Afterwards, Cara was flushing the PICC lines and Dave rolled over and vomited – a couple minutes after taking nausea med and Tylenol. The thyroid pill had stayed behind in the cup so it got taken later. The others did not show up in the vomit so it was hoped they stayed down.
Cara was dealing with his shakes, his vomiting, the blood products, the PIC flushing, the reaction paperwork and protocols all pretty much at the same time at the very end of her shift, finishing up with a minute to spare, if that.
Way back at the beginning of her shift she had come in and said that she had a window to change the dressing and it was then or not at all, but he was shivering too much to do it then (just starting). So it looked like not at all.
Contrary to her word, she did find time to do the dressing. A very efficient, competent, caring nurse. We talked about natural remedies which she is very much into – witness the deep breathing for the shakes. She has won our admiration.
Sunday morning the Dr and Fellow reported that nothing was found in the cultures but the antibiotics would continue because the fevers were still present even if intermittent.
12:15 finished a shower and the day nurse, Stephanie, applied Tincture of Benzoin to his PICC rash. He had been asking everyone about it since it had been the go to remedy of old for skin problems but seemed to be forgotten. Stephanie, however, had not only heard of it, but had access to some!
Yet another chills cycle that afternoon but mild and brief and slept through. At 17:40 he went for a walk with trepidation, expecting to be totally winded in no time, but made 2 laps – near a 1/4 mile, before stopping. A series of middle of the night interruptions (vitals, IV antibiotic infusion, PIC flush) led us to talking for an hour. Dave was his old chatty self and obviously feeling immensely better. His chattiness makes a good barometer to his well being!
Monday morning, the 14th,
3:30 AM another infusion of red blood cells as his hematocrit had fallen despite the last bag.
Monday morning all vitals good. All numbers good. No more blood products needed. We felt refreshed and ready to go home and face Tuesday’s first dose of the second round of chemo. Felt more ready for it than at any time including when discharged from the previous hospitalization. Had no idea if continuing the trial was an option as the bone marrow results were not yet analyzed. But then again, they did not even know if the the bone marrow test had ANY bearing on that. They administered chemo as needed but were not involved in any decisions regarding trials and this trial was so new that they were even less aware than usual of how it worked.
They said that they needed to continue the antibiotic for the day, switch to oral antibiotic in the evening, and monitor the results. Discharge Tuesday. The trial chemo could wait a couple days. Okay. So be it.
I went back to Pete Gross House that afternoon to tidy and clean so that I would not be embarrassed when the maintenance people came in to change the water filters, (scheduled just before all this started) and to pick up a change of clothes since none had made it into the ditch bag. Dave was feeling fine and nothing was pending that afternoon that I felt a need to partake in, so the timing worked out well.
Meanwhile Dave had napped, done some e-mailing, and went for a walk with Elena supervising until she said he didn’t need any and left him on his own. A relaxing day, all told. Come midnight we were feeling great, discussing PTSD, confidence in mind control, the nature of influencing the future, and didn’t get to sleep until 3.
Tuesday morning, during rounds, we were told that they had been mistaken. The 2nd round of chemo could not/would not be postponed, and there were no contraindications for continuing. Therefore, the next dose would again be in hospital instead of in clinic. The drug was actually in the basement of the UW but it was going to take some fast paperwork to divert it from the clinic to 8SA. Not to worry, they would get it done, but discharge would be postponed. No problem at our end!
The day passed with lunch, laps, vitals, drug infusion, naps, etc. After supper, it was time for a shower. Sitting in the chair as before or standing? Standing. Way to go. Dave didn’t want to bother washing his hair but did want to wet it down so the combing would hold. We finished showering and Dave stepped out to dry off, while I was finishing my own shower. Then realized he hadn’t wet his hair down yet so he leaned in and I aimed the personal shower at his hair. Then he reached for the wall to brace himself and make it easier to hold steady. Wrong move. His feet had to little traction on the wet slippery tile floor and the overbalance sent his feet out from under him. Down he went onto hands and knees. The greatest damage was to his embarrassed ego.
Hundreds of times in the past couple of years he had been asked “when was the last time you fell?” and he was always pleased to be able to say some 5 years ago on ice in Oslo. No more. His unblemished no falls since leukemia diagnosis was broken. We dried off, got dressed, and called the nurse to report. He had leaked a couple of drops of blood from a cut on his elbow and had very minor bruises on each knee – REALLY minor given that he had low platelets which exaggerates bleeding. He had also made contact with the wall with his head and there was an almost imaginary pink nickel sized spot to show for it.
So all sorts of tests were conducted including a cat scan! The doctor said that he wasn’t worried due mainly to the lucid way Dave explained the events. And this time protocol demanded the bed alarm and supervised movements. The bed alarm would get set off if I climbed into bed with him so we managed to convert it to a virtual alarm. Swore up and down that he would not even stand up without calling them first which meant bothering them every hour and a half to go pee. The difference between non skid socks on dry floors and bare feet on wet tile had no bearing on the restriction.
If we were not being discharged the next morning they would have brought in a physical therapist for evaluation to decide if the restriction could be lifted, but short of that evaluation, it would stand until he exited the building.
Wednesday there was still no sign of expected stiffening. The cut elbow protested at pressure but range of motion was unimpeded in any joints. Later he realized that some abdominal muscles had been a bit strained trying to catch his fall, but that was all. We were released at 12:30 and caught the 1 o’clock shuttle to the clinic, and another to PGH.
Still amazed at how much better he felt so soon after finding an hour’s sitting up, or a 20ft walk, so fatiguing. Perhaps it is also partly psychosomatic, like the shivering shakes. Wouldn’t it be great if we were better at healing such issues by simply understanding them and refusing to allow them to occur? Easier said than done. But not impossible.