About Dave & Robn on ALEGRIA

Robn is a Widow. I am a Widower. I have had Alegria, as my only home since 1981. I am presently based in Turkey (2015). Robn did most of a circumnavigation in 1969-1975, and moved aboard Heidi in 1990. She has done 98% of a circumnavigation in Heidi. Robn is selling Heidi and joining Dave aboard Alegria. Dave is VERY happy!

Chapter 22

Summary: TL/DR: Two weeks of routine visits to the clinic for labs, infusions of blood products, dressing changes, and Chemo. July 2nd, a trip to the ER for a brief temperature spike did not result in admittance. Instead we went home to find a box of spoiled food courtesy of his insurance company. Their PR stunt actually exposed their neutropenic member to mold which is a no-no. Of course, I should have dumped the whole box down the trash shut, but I wasn’t thinking fast enough.

Saturday, July 3rd it was back to the ER/ED with temp up to 102.7. This time he was admitted. Cultures found no explanation for the fever, so it is chalked up to the leukemia. Discharge on Tuesday, Chemo day, meant getting the chemo in hospital instead of out patient at the clinic due to insurance rules.

Six units of blood over a couple of weeks due to fatigue and shortness of breath issues, but finally getting manageable. He is doing pretty well.

The full text.

The next couple weeks were spent in more long days at the clinic with labs, dressing changes, consult visits, 3 red blood cell infusions, and one chemo. Could not seem to get his hematocrit up.

On June 24th, hematocrit 26, he was able to get a pint of red blood cells due to excessive fatigue. June 29th, at hematocrit 25, he got another for the same reason and on the 1st a third pint with hematocrit at 26.

Automatic infusions were given if it got below 25, but after needing 3 units at 25 and 26, due to excess fatigue, they raised the threshold to 26. This meant counts of 25 were now cause for automatic red cells. Those three units definitely helped, but not really enough. He got a fourth with hematocrit at 24 on July 4th. Interestingly, though, this time he didn’t feel as strong a need for it, although glad to get it. Vampire time!

On July 1st after the morning red blood cell infusion, we actually got to go home for an hour between procedures, but then we came back for another bone aspiration/biopsy and lumbar punch.

During these 16 days after discharge we were unaware of any temperatures above maybe 99.6 – I think it stayed lower than that but I didn’t write them down as they were acceptable.

But then on the 2nd he felt the dreaded chills again and his temperature hit 100.0 at 13:53 and a half hour later had climbed to 100.9. At 101.0 we were supposed to call the triage nurse and knew that the chances of not being sent to the ER were slim. So I started packing the ditch bag and half an hour later, it was, indeed, 101.0. The call confirmed the expected instruction to go to the ER. On the way out we checked for packages for us near the mail boxes but there were none. A few hours later, it had arrived. Explained below. The shuttle took us to SCCA and we transferred to the UW shuttle, arriving at the ER at 4PM. Temperature was already back down to 99.4 (?) or something considered safe.

The ED (Emergency Department – renamed, I guess, because they are no longer just an Emergency ROOM) was full, of course, but this time I stated that he was there for Neutropenic fever and it was only a few minutes before they got us out of the waiting room – not a good place for immune compromised people to wait. We were taken into one of the triage cubicles until a bed became available in ER2. The usual plethora of tests: blood cultures, X-rays, EKG, urine, and a dozen people of all ranks asking basically the same questions: the triage nurse, the resident doctor, the attending doctor. Hmm. That’s only three. I KNOW there were far more than that, but I don’t know who they were.

Anyway, after all the tests showed nothing, they decided after consulting with his oncologist, that he could go home if he was willing but should return if symptoms returned. So we got a Lyft and were home about 9PM. Five hours of tests. We ordered some supper while there but they were done with him before it arrived. The antibiotic had finished and there was still a bag of ringers lactate available. He didn’t need it since he was able to drink but it was used as a good excuse for postponing departure until after the food arrived and was eaten.

When we got home Friday evening of the 4th of July holiday weekend, there was a box of ‘frozen’ food courtesy of his insurance company. We were loaded down with all our ditch bag stuff and that was more than we could handle without the luggage cart, but luggage carts are available and much appreciated and we used one.

The donated food was supposedly so that an insured customer freshly discharged from the hospital could worry less about food preparation and availability. A nice idea, but it’s not working. That need is greatest immediately after discharge – 16 days later, not so much. The first time they provided a box we found the frozen food unappetizing and far too limited in calories. Most of the frozen meals were only about 350 calories! And they were typical SAD menus with plenty of chemical additives. A small step up from boxed macaroni and cheese.

Being frozen we had no good way to pass it on to someone else who might appreciate it more. The second time they offered a box, they said they could provide shelf stable food instead. So we accepted, thinking we could put anything unwanted in the pantry where guests of the Pete Gross House can get snack makings. We asked for vegetarian stuff but no such luck. Mostly meat meals – soup or stew. Portions suitable for a toddler. Crackers galore, all crumbled into crumbs. A container of orange juice had leaked all over the contents making everything sticky. Again it was some 10 days post discharge before it arrived.

But that was nothing compared to this most recent package, number three. A box of frozen meals. The dry ice was long gone and when I picked up the inner box out of the styrofoam it was soggy and warm. Not good. Having no idea how long it had been at room temperature, we figured it was unsafe – especially after seeing spoiled food that had leaked from one (or more) of the meals and coated the box corners. It was those unpalatable 350 calorie SAD meals which we hadn’t wanted anyway. So I decided to simply empty all the solid stuff into the compost bin and pour any liquid stuff down the drain.

In hindsight, I should have just dumped the whole box unopened into the garbage chute. Instead I took the frozen meals down to the compost bin in the basement, fished out a couple of plastic containers that didn’t belong there, and proceeded to separate the food from the non-compostable containers. What a mess! The sealing plastic was hard to remove without the tools I should have brought but didn’t, and puncturing it with my thumb was not a very good substitute.

Once I had opened the packages, it was clear that the food was LONG gone, spoiled, moldy, beyond unsafe. I now had 7 meals in the compost and 7 plastic trays needing to be cleaned and put in recycle, and hands covered with spoiled food. I used some of the delaminated cardboard paper to wipe them and then another tenant drove in and thankfully provided me with a wet paper towel.

The low fat milk cartons all had a half inch of solids in the bottom under transparent liquid. The ‘orange juice’ cartons had what seemed like tissue paper in a brownish liquid – I’m guessing it was somehow related to the package liner.

I belatedly thought to take pictures of what I had not yet disposed of, finished the disposal down the garbage disposal and then disinfected the kitchen. Believe it or not, my nose was unaware of the spoilage, it was only my eyes that informed me – and Dave’s nose. He said it stank. It then occurred to me that Dave is supposed to avoid mold among other risks due to the neutropenia! And here I had introduced moldy food to the apartment and he was able to smell it.

And just think: if we had not come home from the ER but had been admitted, that box would have sat there in the lobby for the holiday weekend since the office was closed. Or until security or another tenant became aware of the stench and dealt with it.

How’s that for a rant! I’m pretty disgusted by what I consider a PR stunt that, for all I know, may have put Dave at increased risk of additional health issues. Holiday over, they will get a piece of my mind!

Finally got to bed around 11 after the clean up and slept in Saturday morning. At 11:11 Dave was feeling a bit chilled so we took his temperature and it was 99.8. A half hour later, at 11:43, it was 100.9. Climbing fast. Already packing. Nine minutes later, at 11:52, it had reached 101.2. Called triage. Quite a debate about what to do. The oncology/hematology floor that we have always gone to was all full until after 6PM, so there was no way to go directly to admissions. But antibiotics needed asap (after tests) so it was either SCCA or ER. SCCA closes at 6 on Saturdays, and hospital beds were not expected before then. They could get the tests going and the antibiotic, but would probably insist on an ambulance ride to the hospital ER when they (SCCA) closed. The ER was full but not with patients who would have priority over him, so he could probably be seen fairly quickly. We decided on going directly to the ER since we would probably end up there anyway and it would probably be best to arrive before they got a lot busier. At 12:18, just before heading out, his temperature was 102.0. At the ER we were seen promptly despite the receptionist insisting that they were FULL and we would have to wait – telling us this as we were being escorted to a room with a bed. We were willing to wait there, away from the waiting room of unknown dangers, but it was nonstop action for the next half hour or more – no waiting. They were picking up from where we left off, repeating pretty much every test, but with familiarity with his case. His temperature on arrival was 102.7.

Admitted upstairs at 6:30. He had had a COVID test in the ER the day before and it was decided that he did not need a repeat of that particular test. But after 5 hours in the ER waiting for a room and finally making it upstairs, they then informed us that he did need a fresh test and that until the results came back the next morning I would need to go home! Arghh! They could have done that during those 5 hours and saved time, but no. (The last time the COVID test was done at about 10PM and results were back by 2AM but this time it was a holiday weekend). The nurses were very apologetic, agreed that it seemed overkill, but rules were rules. It was beyond us how HIS test would affect the risk of ME being there.

Dave was not a happy camper and was ready to file a formal complaint but, naturally, there was no way to do so before Tuesday. I had gone downstairs and found several couches near the elevator on the third floor and debated camping out there for the night, but decided I could get home by mass transit for a buck with some exercise thrown in and get a comfortable night’s sleep – if I could sleep at all. So I headed for the bus stop and waited for the crosswalk signal as my bus proceeded through the light. Darn! Ah, well, there would be another in 10 minutes, no big deal. I was halfway across the street when my phone rang and Dave reported that special dispensation had been received and I could come back! The nurses apparently had asked some higher up and gotten permission.

We volunteered for me to take the COVID test as well as Dave, but they brushed that off as being totally unnecessary. I have never been tested for it. He gets tested every three days while here, and on every admittance. Sorry, I can’t fathom the logic. As I said, how on earth does HIS test affect the risk of MY presence?

That night around 8 he got the chills again – the shivers and shakes and that horrible feeling of ‘here we go again.’ Back to the 8 hour cycle. But with the help of deep breathing and distraction techniques, he kept it from getting out of hand. It was worse than the last episode before the previous discharge, which was discouraging, but he kept at it and it remained manageable even though anything but pleasant.

By 9:30 the worst was over and the temperature was spiking. They gave him Tylenol to bring it back down. 10 PM was another bag of antibiotic. At three AM he was feeling pretty good except for being very damp from the sweating. Nervous about getting cold again. Changing into dry clothing might start the chills again. Decided a hot shower would maybe stave off the next chills and would at least get him clean and into dry clothes and sheets. Discovered the pick dressing was falling off but they told us it was okay to shower and brought us the needed towels, sheets, gowns, etc..

Put on his newly purchased shower shoes and took a shower. For the first time in ages he didn’t feel a need to hang onto the grab bar! He felt safe. Finished the shower and made it back to bed. Then I found the disc that surrounds the PICC line at the insertion point had somehow gotten onto the floor!! So the dressing change couldn’t be postponed anymore. The PICC line itself has markings on it every centimeter to show whether the line was pulling out or somehow going in. Our paperwork showed that it had been 3 centimeters of exposed line when installed. It had been 5 since the first or second dressing change weeks ago but no notation had been made so our protestation that it had come out an additional 2 or 3 millimeters, not 2 centimeters, fell on understandably deaf ears. It was simply dangerous to take the word of lay people on critical stuff. So they insisted on yet another set of x-rays to check the location of the other end at the heart. Four x-rays had already been taken the previous 2 days showing where the heart end of the line was – but they had no documentation that the exiting line was at 5 cm during those x-rays rather than the 3cm on the paperwork. For all they could prove, the line might have moved 2 cm out that day and hence might have become mis-located. We made certain that the documents got updated to show that 5 cm was an acceptable showing.

So by the time the dressing was changed and the x-ray taken it was past time for the 4AM chills, not that we wanted them! Around six o’clock they finally came but they were mild and brief. Hematocrit Sunday morning was 24 so another pint of blood was ‘ordered’ (unit #4 mentioned above), but neglected to be entered and the order had to be tracked down and the blood finally arrived around 4PM. Again, during transfusion the chills came or at least a sense of being cold and expecting the chills. It passed and then came the usual temperature spike but it didn’t quite qualify as one. It got up to 100.9 and I said to check again in half an hour instead of an hour since it climbs quickly. If it went another tenth of a degree it would be time for Tylenol. Instead it went back down. No need to report a possible blood reaction. No need for Tylenol.

Despite the new blood, Dave did not feel like doing any laps, but he has been using the computer while I’ve been writing this. With neutropenic fevers, the norm is to wait 48 hours for cultures and further signs of trouble and if none, discharge. That would mean Monday evening which means Tuesday morning – which is when he is due for his next chemo. Rather than do that as an outpatient the same day as discharge, he will probably get the chemo here and then be discharged.

So Monday morning his hematocrit had dropped to 23 despite Sunday’s unit of blood!! So he got yet another unit (#5). This time we got a check shortly after infusion – curious as to what the initial boost would be. It went up to 27. Most units provide a boost of 3 or 4. This one did perk him up and he walked several laps and later took a shower. The doctor said that they could not do the paperwork to divert the chemo from the clinic yet because it’s a holiday, but they would do it first thing Tuesday morning. Getting discharged Tuesday and then going to the clinic for the chemo was not an option due to insurance rules!! If we did that, the insurance would not cover the chemo. Wonder what the reason for that is?

Tuesday he got unit #6 of red blood cells!! (Hematocrit had dropped back down to 25 (from 27) as of midnight Monday, low enough for another unit.) He had donated blood often over the years, pretty much every chance he got, as we always felt that it was such a life giving gift that costs nothing. Now he is the recipient, instead of the donor, and we have first hand experience with the difference that it makes. He walked an entire mile after that unit and only quit because he was nervous of overdoing it, since he had been sedentary for too many weeks. He is feeling much better although nowhere back to normal.

In response to Dave’s complaint, the nurse manager for the floor came in and talked about the COVID rule which still does not make sense. But she said it was a hospital wide rule and wasn’t going to change. If we run into this again, we can ask for an immediate covid test down in the ER, and we can ask again for special permission if needed upstairs. We asked if she knew why they still use the torture test in the ER – the one where they push a long swab to the back of the sinuses. She was incredulous, said that test had been discontinued a month ago and should not be in use. She would get to the bottom of it.

She reported shortly afterwards that the ER manager was also shocked and extremely embarrassed and agreed that it should not have happened and she would see to it that it didn’t happen again, apologies galore.

The chemo did not get sorted until mid afternoon and our nurse was aware that we wanted to catch the shuttle to SCCA – the last of which departs at 5:40. She pulled out all stops to ensure that there were no further delays even though we could catch a Lyft if we missed the shuttle. But, the shuttle is free and Lyft is $21.00 or more.

At 5:35 I headed down with all the luggage to let the shuttle driver know (at 5:39) that we would love a ride if he could wait – that Dave was a few minutes behind me. The chemo was still running when I left. About 5:36 or 7 the chemo finished, followed by a minute of line flushing, a reinforcement of the dressing, and putting on his shirt. At 5:45 (5 minutes past the bus’s scheduled departure time) the driver decided that it would be okay to pull up closer to the entrance and timed it perfectly – Dave reached us about 5 seconds after we pulled up, with the nurse escorting him. We arrived at SCCA before the 6 o’clock shuttle to Pete Gross House departed, but it was already full so our driver from UW had us get back on board and brought us all the way home. Back in the apartment at 6:10 with yet another PR donation from the insurance company – again with an empty orange juice container that had spilled sticky juice over everything else.

chapter 21

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.

chapter 20 post hospital

Date: Thu, Jun 17, 2021 at 4:45 PM
Subject: chapter 20 post hospital

TL:DR
A week of clinic visits to ensure he has enough platelets and red blood cells post chemo. Long tiring days, but managing well.

We escaped the 6 hour marathon at SCCA clinic for the 2nd dose of chemo since it was given at the hospital. Even so, the schedule of followups was a bit daunting.

Thursday I realized that the parking fees had jumped from $6.48/day to $16.48! Ouch. Not worth having Riva, our RV, around at that rate. Susan happened to call with an offer to bring our mail, so we asked if I could run Riva up there for storage and get a ride back to the bus on her trip into town. That worked out great. Mailed received and parking problem solved. We managed an overdue haircut and took a shower before I left.

Friday the 4th, was a long day at the clinic for labs, consult, and platelet infusion. 11:40 to 6:20! We made use of a wheelchair and begged for, and got, a place for Dave to lay down. Sure wish that option was available for many a patient in ER waiting rooms. Why miserably sick and injured people should have to sit up in waiting rooms makes no sense to me. Not enough energy for a shower, so wipe down instead.

Saturday was another day off.

Sunday, the PICC dressing needed changing, more labs, and another bag of platelets. Only about 4 hours this time.

Monday the 7th, was supposed to be a day off but the foley line came off – separated from the anchor on his leg when he rolled over, so we went in to have it monitored and removed. Had lunch at the clinic Bistro and made it home in time for me to take the shuttle for a grocery run.

Tuesday, the 8th, was the usual labs plus a visit with Dr. Cassaday. And more labs as some of the tests hadn’t been done! Also another dressing change as the 2 day old one was falling apart. Still using the wheel chair and lying down whenever possible. Just walking from chair to toilet would get him breathing hard as if he had run upstairs. Nothing in the numbers to explain it though – including the oxygen saturation right up there at 97 plus or minus. Yes, a bit anemic, but no more than other times without this effect. Put down to either the leukemia itself or the treatment or unknown factors. 9AM to 1:15PM made for a welcome "short" day.

Wednesday was another day off. We discovered that an appointment had been made with a urologist for the 21st, without consulting us, but it didn’t conflict with any other plans and seemed a sensible thing to do. We wanted to be sure that he was “in network” so there would be no insurance hassles, and it took a ridiculously long time and 6 or 7 phone calls to do so, but we did verify it. We think.

Thursday, the 10th, was going to be another all day marathon including bone marrow aspiration and lumbar punch as well as labs and probably platelet infusion. Headed out at 9:45. After the labs we asked for a spare bed to lie down on and they found one and got him all comfy. Except 5 minutes later they said that there would be no infusion after all and they would move up the other procedures so that he could go home sooner – and moved him to a less comfortable exam table closer to where the BM and LP would be done. We waited there for maybe half an hour and then they moved him again to the procedure room. Not complaining! They were indeed juggling things around to accommodate him and got us finished up by 2 instead of 4:30. We missed a shuttle, but got home by 2:30. They had to do a biopsy as well as aspiration, meaning that they took a bit of pelvic marrow “bone” as well as liquid, because the blood did not have enough stem cells in it. Don’t understand the significance of that if any.

I’m sure glad that we have lodgings at Pete Gross House, only half a mile away from the clinic and with a shuttle running every 20 minutes (except when they detour to the grocery store twice a day). The routine is really not all that much to deal with when feeling okay, but when out of breath and tired, it becomes a chore. Except for the fatigue, though, he’s doing great. No pain, minimal nausea under control, digestion okay. And all the symptoms are related to preconditions and other meds. So far as we can tell he has had zero negative reactions to the chemo! Certainly nothing compared to the chemo of 2019. No hair loss, oral mucositis, etc. etc.

This doesn’t quite bring us up to date but is a good breaking point in the saga.

Robn

journal 19 June 2nd

Date: Thu, Jun 17, 2021 at 3:19 PM
Subject: journal 19 June 2nd

I wrote this back on the 2nd but for some reason did not send it out then. I’ll leave the next chapter for another message rather than make this one book length.

TL:DR Stayed in hospital for second dose of trial drug and then went home with Dave exhausted and with a catheter, but otherwise doing well.

Turns out I sent out the last message at the climax. The following morning (Saturday) there was one more cycle with much milder chills, fever, and sweats. And that was it. Except for the exhaustion. We spent the day mostly sleeping and waiting for the other shoe to drop. It did not. Sunday more sleeping. They stopped the antibiotic. Now down to the old Acyclovir anti-viral and the new allopurinol to protect the kidneys from their overload of work.

They said we could go home Monday and that sounded great at first. Then we got to thinking about the logistics. No shuttle due to holiday. Well, we could get a friend to drive us or get an Uber. That’s okay. But then we would be expected at the clinic at 6:30 AM on Tuesday for 6 hours of blood tests, dressing change, provider consult, 2nd dose infusion, and observation for reactions. That does not appeal at all. Dave did manage to do 7 laps of the halls today, starting with 1 at midnight and another 2 every several hours, but had to push himself due to energy levels being so low. Anemia doesn’t help. So we shall see.

The good news is that numbers that need to go up are going up, and the numbers that need to go down are going down, and vitals are already stabilised. BP around 100/60 to 110/65. HR around 50-60. Temperature around 98. Oxygen around 94-97. All good.

Me, I have been amazed at how much and how deeply I have been sleeping. Admittedly I wasn’t getting any to speak of for a few days there but I felt fine then. Once being up was no longer needed, it was catch up time and boy have I been catching up and catching up. I’m told that it is hard on the adrenals and they take a long time to recover, so if mine had not yet recovered from the first go around, they would have been quicker to exhaust.

It is now Sunday evening and despite snoozing and or sleeping most of the day, I am going back to bed yet again. We shall see what tomorrow brings.

Monday, Memorial day:
Andy the nurse practitioner came early. Dave started to explain that he didn’t feel ready to go home yet. “Okay," said Andy. Dave explains that the 6 hours of sitting on Tuesday would be too much, considering that he was still finding an hour up for a meal about all he could handle. “Okay,” said Andy. Dave’s about to press his case, but I pointed out to him that Andy had already agreed.

Andy said he wanted to give him a diuretic to take off some of the Prednisone water retention, as both the weight and the steroid can contribute to fatigue. Also check how much is not being voided. Also check how his BP and O2 are affected by exercise. So no discharge but instead another day of rest turned into a very busy day and he ended up even more exhausted than before. O2 and BP tests didn’t show any problems that I heard about. But the diuretic they gave him was pumping out fluids faster than he could void them, with a whopping near 500cc not being voided. Andy is concerned about that and considering options. At least he lost a few pounds in the process. At the max, Dave had more than 8Kg of fluid retained.

Decided that trips to the toilet or even using the urinal in bed every 10 – 15 minutes was not a good idea, especially given the level of fatigue and sleep deprivation, so it was determined to "try” (not an easy thing to abort) a foley catheter. It, unfortunately, involved some insertion trauma and hence bleeding, but it did make a huge difference in the ability to sleep. He was given a bag of platelets (due to low counts plus the bleeding) and we felt glad that we had not gone home.

Tuesday was another bag of platelets, the second dose of prodrug at 4PM, followed by a second diuretic, and a bag of red blood cells – if I haven’t lost track of it all. I was sure today was Thursday but it is only Wednesday so I have indeed lost track of the passage of time.
He is still experiencing the cycle of chills (without shivers) fever and sweats but so mild that we would not have noticed the pattern if it hadn’t been for those severe cycles. Several of the meds have been stopped leaving the original acyclovir anti virus, plus flomax to help with voiding, and the synthetic thyroid which they had started to taper him off of but then went back to the previous dose thinking that the tapering was contributing to the fatigue and simply adding one more variable to juggle.

The Picc Line dressing area has, as feared, itching red raised irritation so they are trying Benadryl for that.
Tuesday night he was out of breath just standing up from the chair, making us nervous about going home Wednesday. The foley will probably be used for a few more days to minimize the risk of re-traumatizing during removal and to allow for more undisturbed sleep. No blood thinners until platelets stabilise at 50 and there is no bleeding. They are putting together the discharge papers for today – Wednesday, 13 days after admittance.

Social Worker came by and decided that our plan to take the shuttle to SCCA and then another shuttle home was for the birds and ordered a cab for us. We had a final shower where it is easier in case it proved too taxing at home.

They brought in a leg bag for the catheter which is more discreet but due to its limited capacity and need to deal with it every few hours we decided it was more trouble than it was worth. It also required daily cleaning with either vinegar or chlorine. Switching back and forth seemed to be asking for trouble with the possibility of contamination. or even breakage of connections. So I asked how to clean the larger bag – not needed! For the life of me I can’t figure out why one bag would need daily cleaning and the other none, but it sure made the smaller bag less appealing.

I went to get the prescriptions at the pharmacy but was only able to get the flow max. Benadryl is over the counter, not covered by insurance so they don’t deal with it. Acyclovir and the synthetic thyroid had not been prescribed – I guess because he was taking them before arrival and, yes, we still had some in stock.

So we got out of there at 7PM and took the cab home and Dave went straight to bed and enjoyed an almost uninterrupted night’s sleep (except for one bathroom trip).

chapter 18, here we go again!

Date: Fri, May 28, 2021 at 9:09 PM

TL:DR summary at the end. (TL:DR stands for Too Long:Did not read)

April 16th we walked around Green Lake, had lunch at a Tamale stand, got some groceries, stopped at our storage unit, and some how or another spent about 7 hours out and about. It was a great day.

A couple days later, Dave was slightly feverish for a couple hours. Next day repeat. It quickly became a pattern, the chills would come on rather suddenly around 10, with sweating, as his temperature climbed,, peaking about noon, and dropping by 2. The rest of the day his temperature would wander slightly, frequently slightly above normal, under 100 with additional sweating at night.

But then came a day – Wednesday, the 19th of May, about a month after the first chills, he was making a lasagna for supper and was out of breath. It was reminiscent of the pulmonary embolisms he’d had the previous year. Wanting some one to order a scan we went hunting for the doctor who had last updated his prescription for his blood thinner a year ago. Finally got the right phone number and called the office. We were told the doctor would be informed of what was going on but that he should go to the ER in the meantime.

Arrived at the ER at 12:10 on Thursday the 20th, 1 year 7 months 4 days after this whole leukemia saga came to a head. They took him back a few minutes later but told me to leave even the waiting room – until he passed a Covid test. He passed the test and they let me rejoin him.

They ran all the usual tests from EKG to Cat Scans to blood tests. WBC 77000, 94% immature blasts. Relapsed Leukemia. Most likely T-ALL, although there was a tiny possibility that it had morphed into something else. Not good news regardless. But, at least everything else came back good. Heart, lungs, liver, kidney, etc. all in good shape. Only those damn blasts plugging stuff up.

He had thrown up when he first arrived because he had not had a chance to eat anything and his stomach was objecting to the thyroid pill he had taken. Then he asked for water and they said no because he had thrown up, despite it being because he had not had anything to eat or drink!

Hours went by, no water. Finally allowed some slow sipping when his protests of thirst got loud enough. After which he was finally able to provide the urine sample they wanted. It was dark, of course, due to dehydration and therefor they wanted to give him intravenous fluid even though he was more than willing and able to get the needed fluid by drinking.

So we spent the afternoon in the ER and had supper there waiting for a bed to open up on the oncology floor just like the first time. They wanted to keep an eye on him overnight. They started him on Hydrea which kills white blood cells indiscriminately, causing neutropenia if it isn’t already present. They also gave him other stuff to help with clearing the ensuing debris.

Friday, Dr. Cassaday showed up and the deja vu continued. “There is a clinical trial that you qualify for but if you are interested you need to sign NOW.” The chemo had been needed to get the leukemia under control. But Dave and I had already agreed that during the last 7 months he had done much better on Alternative medicine than he would have on chemo, and they had said that when the T-ALL came back/relapsed they would only be able to try to keep him comfortable. So we had agreed to no more chemo if that were the recommendation.

Another study option was a surprise. And an interesting one to boot! One that is studying a prodrug – a treatment that targets a specific enzyme found in the leukemia cells (and unfortunately a few other places). By targeting that enzyme a lot of collateral damage could be avoided. This is a phase I trial, however, with plenty of unknowns. Pre-human studies looked promising and the expectation is that liver, kidney, small intestine, and colon would also be attacked but within tolerance. No expectation of neuropathy, oral mucositis, hair loss and other common side effects. Dave would be patient number 4 or 5 (or there about)! He is only the 2nd to be on this local study.

The study is to try to find that sweet spot of efficacy where the collateral damage is still tolerable. Since only the lowest dose has been tried and his will be one step up (if we understand correctly), it may be too low to work well enough. We must trust that the universe has arranged for him to be on the best dose. Waiting for a higher dose later in the trial while we cogitate the pros and cons of participating was not really an option. It would risk higher collateral damage, but more importantly the Hydrea is only a stop gap measure and his condition demanded a better, prompt response. The number of malignant cells doubles every 10 or 12 days so waiting would be dangerous, they were already too high.

These studies, we are told, are scarce as hen’s teeth, partly because the T-ALL is relatively uncommon. So what are the chances of twice being eligible for a trial exactly when needed? It actually struck me as being suspicious that it would happen. Dave signed with the understanding that we could back out at any time. Kind of like putting earnest money on property. No point in doing due diligence unless your offer is accepted. But as soon as the ink was dry on his signature the story seemed to change.

I had the impression that nothing would need to be done until Monday when they would do a bone marrow out patient test for data and then start the treatment possibly as early as Tuesday the 25th – the earliest they could get the prodrug. But with the signature, it was suddenly changed to staying in hospital for continued monitoring and more Hydrea. Being in hospital means constant activity, blood draws, vitals, rounds, etc. which all add up to sleep deprivation. It almost seemed to me that they were deliberately ensuring that due diligence would be next to impossible.

Then putting in a Pic line was also scheduled for Monday. Schedule getting tight. Pressure, pressure despite assurances that we should not feel pressured! My daughter found a study using the same drug on liver cancer and spent hours getting an understanding of the medicaleze and pros and cons of the prodrug, thereby doing a huge amount of due diligence for us, and reported that it looked good. So we very gratefully relaxed and felt better.

We are not happy to be relying on Western Medicine again, with weekly visits to the clinic and the pic line needing to be constantly tended to, but we survived the last study and follow up treatments and this is expected to be easier. And given that last summer we were told that he would ‘probably not live past March or April 2021’, we are certainly glad to have yet another chance of beating this.

This study is specifically for those who either did not respond to original treatment or had relapsed. Not for those newly diagnosed nor for those in remission. Why, I have no idea.

So the weekend was just hydrea and related meds plus fluids and observation.

Monday was super busy, including calling Dave’s Septic Service to discuss his visit with the county officials at our Wye Lake property, to determine what would be allowed for well and septic locations and type. We had had every intention of being there, involved in the Q & A, but it took 3 weeks to get the appointment and they went and scheduled it for Tuesday the 25th. At the time the appointment was made (a week earlier on the 18th) we still thought we would get the fever under control and be able to go, and maybe I could be there even if Dave wasn’t up to it. We sure didn’t plan on being in the hospital starting chemo again while the officials were looking at the property. So talking with Dave about the situation was high priority for Monday.

We were also trying to get confirmation from the insurance company that not only was the study covered but also any ‘injuries’ caused by it. The paper work Dave had signed mentioned that some companies won’t cover such injuries and that we should ask. Easier said than done. Every number we called, every person we talked to for hours wanted to pass the buck claiming we needed more information for them to plug into their computer or that they were the wrong department. It was getting pretty frustrating. But eventually we did get the needed info and then the coverage statement. That was reassuring, as without it would mean giving them a potential blank check.

We had made several calls over the weekend which were unsurprisingly unproductive. But Monday should have been easier – it still took from 8AM till about 11. Three hours give or take a bit with not much time between calls. Isn’t our insurance system wonderful?

Next on the agenda was putting in the Pic Line which this time went in the left arm due to no good veins on the right. I was kicked out of the room for the procedure and when I came back I asked Dave if there had been any discussion about the skin irritation problem he had had before. No. But she hadn’t disappeared yet so I got her to come back and discuss his questions.

We explained that we wanted to be sure that the problem never started since the full 6 months (or however long it was) that he had the previous pic line, we had never gotten the skin to fully heal. She advised making sure that it was cleaned with saline solution before reapplying the clorohexadine antimicrobial and which dressing to use.

But when we passed on this advice to the nurse who would be doing the dressing change the next day, she went on and on and on about it being a different situation and there was no reason to be afraid of the skin getting irritated because it was very unlikely, but that when and if it did, they would deal with it! What part of being unable to fix it after the fact did she not get! We could see some redness at the edges already – the same place we had trouble before, but she insisted that was only pressure from the initial dressing that had to be tight to ensure there was no bleeding. "Not to worry". We shall see.

Once the pic line was in, it was lunch time and the bone marrow people were already waiting outside, but they were told to wait. So he had his veggie burger and finished right at noon which was when the procedure was scheduled for. But it was another 10 or 15 minutes before they were ready to start. They still had a whole lot of confirming exactly what was needed to do (how much in what vial for what purpose)– and explaining to a student what they were up to.

There were 4 of them. Andy (the Nurse Practitioner), the student, the lab technician, and a familiar face. Not positive what his role was but believe he was a teacher/supervisor helping Andy teach the student – Andy being experienced but possibly a tad rusty and benefiting from backup.

During the bone marrow aspiration they took 15cc’s of marrow for starting info and also for possible later studies not yet dreamed up. They went back and forth about whether they also needed a bit of bone for biopsy but decided against it.

Two o’clock they finished and 6 hours of non stop overlapping activity finally ended. We took a deep breath and then a nap. Then more phone calls trying to get access to his records for his outside doctor.

They talked about giving him platelets and whole blood due to dropping numbers but, again, decided not to. They also mentioned getting a blood products consent form signature since it would be needed at some point regardless.

That night he had fever and chills, very like the noon episodes of the past month except for the timing.

Tuesday was another busy day but not as much. It was the big day with the start of the new prodrug. Quite a bit of double checking that all numbers were appropriate. Then a shower with thorough antimicrobial cleansers. Followed by vitals. Then an EKG. The infusion itself only took 30 minutes. Another EKG. Frequent vitals at first then back to the 4 hour routine.

Tuesday night, fever and chills again – again 24 hours apart. Wednesday morning, they talked about giving him antibiotics – I think it was because he said there was slight burning on urination. We expressed puzzlement. We had inquired about antibiotics when he was first admitted in case the fever was due to infection. But they had insisted that there was no infection. Now, with the same symptoms, they were suddenly concerned. They seemed unaware that nothing had really changed. Seemed to think these were new symptoms that justified antibiotics even though the identical symptoms earlier had not. So which approach was correct? Antibiotics or none? After clarifying the history it was decided to check again for infection and hold off on antibiotics pending results since they were unlikely to have changed.

Wednesday he was feeling better than he had in several weeks and feeling optimistic. White cell count was down – I forget how much. Still getting Hydrea and Pregnisone, and stuff to help the kidneys deal with all the dead blasts. Numbers inconsistent but generally moving in the right direction. The nurses are constantly lecturing him about being careful because his BP is too low for their comfort, but it has only rarely been low for him and he is well aware of the need for caution.

That night, some 35(?) hours post infusion (in the wee hours of Thursday) , he was too chilled to go to the toilet for his half hourly pee and settled for the hated urinal. He asked how much volume there was and as I was checking the level I realized that the color looked really strange. It took me a moment to realize that it was due to blood in the urine. Probably would not have noticed if he had used the toilet as usual. We had gone through this during the D EPOCH trial but it was far enough back that I was not on the lookout for it.

Reported it to the nurse and she sent a sample to the labs and got an order for platelets but that had to wait until they could get a signature on the consent form. A form they had talked about getting signed at least twice before but had not gotten around to. Not exactly on top of preparations for eventualities. At least the blood settled the question of why there had been a burning sensation while peeing. Also that night he had a slight headache that didn’t last, but a bit scary given the blood and history of subdural hematoma!

Thursday morning they said they wanted to give him antibiotics to be sure no sepsis got established. That sometimes, with cancer patients, they never find the source of fever but it can still lead to trouble! Why didn’t they say that before? Why did they object to antibiotics when he first came in?

I’m confused, but acknowledge that it is very complicated and there is no way I can be brought up to speed on all the different factors.

It is now 1 week since he went it to the ER. I probably should not be surprised at how similar this is to the last time. In spite of that, we are hopeful that the side effects will be minor and fewer.

I did not get this out on Thursday because I wanted Dave’s input and he was too tired to give it.

So, to continue, Thursday afternoon he had another bout of chills, fever, and sweats. More severe than previous bouts. Violent, exhausting shaking. Higher fever. Drenching sweat. But once it was finally over and he had some sleep he was feeling better. We took a shower and he climbed into a nice fresh bed. The first bag of platelets was not quite finished when it was aborted due to this latest onset of chills and spiking fever – which could indicate a reaction to the blood product. The partial bag was enough for his platelets to climb from 18k to 35k – but then they dropped back down again to 20 something. Perhaps used up to stop the urinary bleeding (and possibly other unknown bleeds), but it could have been something else. So it was decided to give another bag of platelets.

Having rested up, it was time for the additional platelets. They ordered them. They gave him some Tylenol to hopefully forestall a fever but the fever started climbing an hour later anyway. Rather than start the bag and have to abort it, we waited for the Tylenol to kick in. If we waited too long, however, the Tylenol could wear off before the infusion was completed. Picked a starting time by guess and by golly. The fever climbed. The platelets dripped. Made it. The fever climb did not exceed the magic 1 degree Celsius number. The fever was expected to go up as usual regardless of the platelets but since it could mask additional trouble from the platelets, the protocol is to still abandon them. He had a third bout of chills, fever, and sweats that day. This had already gotten old a long time ago.

Friday was a repeat performance with trying to figure out the best time to give the blood that was needed due to low hemoglobin. He had recovered from the most recent bout and it was decided it was an opportune time to do so. The blood arrived with an unusable label and had to be sent back with a STAT replacement request. But the STAT didn’t happen. And when it did arrive, the chills were starting up yet again. So the blood was sent back to the displeasure of both the blood bank and the nurse.

Waited a few hours for the cycle’s fever to break and then reordered the blood even before the sweating ended and the temperature returned to normal. By the time it actually arrived, the temperature was indeed back to normal. So that timing worked out well.

The most recent report said that the white blood cell count had dropped from a high of 77k to 1.79k – with zero being the goal. Most numbers were where they expected or wanted them or trending towards them. The biggest problem is the darn fevers – 3 per day now. They are exhausting and miserable and we don’t know why they are occurring. Nevertheless we are optimistic.

TL:DR
To summarize:
Surprisingly similar to October 2019, Dave is in the hospital with relapsed T-ALL leukemia. He is again in a clinical trial for a new drug – this time something they are calling a prodrug. It is supposed to ONLY attack cells with a particular enzyme found in abundance in the leukemia cells – but also found in some other places. So still not a panacea but far more targeted than other chemos. He has already had his first dose and if it does its job will continue getting them for up to a year. One of the reasons he qualifies for this trial is that he is otherwise in great shape with all organs healthy – we believe due to the alternative treatment we chose instead of maintainance chemo.

chapter 17

Date: Sat, May 15, 2021 at 6:34 PM
chapter 17

4/21/21

At some point in the past few months I was, I guess, feeling something I couldn’t and still can’t quite put into appropriate words. A desire for a more goal oriented future I guess. Twiddling my fingers while waiting and hoping that health improves was not cutting it. We were wanting to return to Turkey and Alegria but were at that time still uncertain about Dave’s health, and we were uncertain about the tourist rules in Turkey as well. So what about in the meantime?

I got thinking about asset diversity as well. We are dependent on Dave’s assets for income as our SS is insufficient for our expenses. The constant refrain is to diversify, diversify, diversify. Except that seems to mean a bit of stock, a bit of mutual funds, and a few bonds. That just doesn’t seem broad enough to me. I felt that a three cornered strategy should include Financial Investments (the stocks, bonds, and mutual funds), Commodities (like silver), and Real Estate.

If the first couple of legs of that triangle collapse then one can be in serious trouble. If the third collapses, at least you still have a place to live. Granted you have to be able to pay the taxes and utilities, etc. Still it seems to me to be a good hedge against rising rental rates and in the long run the safest investment since no new land is being created.

On top of everything else, despite loving the open ocean and the rootless lifestyle of a cruising sailor, I nevertheless always felt a desire for a home base – a more permanent anchor shall we say. A place with fewer restrictions than an apartment where the landlords too often say “no pets, no painting the walls, no this that or the other, oh, and the rent is going up.”

Long story short, I started looking at Real Estate with an eye towards either investment and/or a home. One of the first places we looked at turned out to be a turnkey mobile home and work shop on 5 acres. Complete with furniture and other usable stuff. We made an offer which, of course, included contingencies. The seller wouldn’t accept the contingencies, so we kept looking. It continued to sit on the market and we kept wondering if we should reconsider it since he had belatedly agreed to the contingencies. Trouble was that in the meantime, we had decided that we wanted to get raw land rather than a house. We did not want to go to Turkey and leave a house unattended nor could we have a tenant when we have no idea how long it would be for.

House prices are going through the roof now, with a sellers market. Each house has several buyers trying to outbid each other so selling prices are even higher than the already high asking prices. Talk about a bubble! But that’s what Dave’e been thinking for 50 years! Yet it keeps going up with minor hiccups.

The same is true of raw land but not quite so bad. The houses in our price range are older mobile homes of a quality that does not appeal. We feel that we can build something far better for the price. If we find out we can’t, then we would probably resell the land.

The story of our search could fill a lot of pages but I’ll settle for the story of the Wye Lake property. By the time we saw this we had narrowed our search to the south Kitsap/Key Peninsula area for a number of reasons including it being near dear friends of ours. We were mostly looking at larger acreage – ideally 5 acres – for the elbow room and the ease of development. But most of them were considerably more than our desired budget of 50,000 which we quickly decided was a pipe dream.

Yes, there are places that cheap and cheaper! But they are from sellers who are hoping to unload unusable lots during this market where people are actually foregoing due diligence! These ($50k) places are just wet lands, or have no access, or are way too steep, or are under high tension power lines, or 500 x 50 ft next to a major highway, or whatever. Mostly places I would not want as a gift!

So we were looking a bit higher but still trying to stay under 100k. This property at Wye Lake was asking 78k but consisted of the land north of Shirey Street and west of Bouchard – 250 feet of Shirey road frontage by 100 feet deep EXCEPT the middle 50 feet!! A large private forrest to the West and only 2 houses in sight. Given the lot in the middle we felt it was overprices and offered 70k. Other offers were already on the table complete with escalation clauses! Were we willing to go higher? We added an escalation clause going as high as 86K if I remember correctly. Can’t even do due diligence without a foot in the door and we could back out if we determined it wasn’t worth it. Someone else got it, meaning they bid over 86k. Wow!

But then we heard that he had backed out and the property was taken off the market! Rumor was that it was not possible to put a home on each of the 100×100 ends of the street. One home site was enough for us, so we offered 55k. They countered at a firm 63k. Okay. Then begins the due diligence – including negotiating with the owner of the lot in the middle.

Lots of telephone tag with a myriad of county officials and a lot of buck passing later, we were pretty confident that we could build there. We would have to put the well on one end and the septic at the other and pipe from the house to the other parcel, but this could be done in the county right of way with a letter from the county saying that the land was not buildable without a utility easement.. We would need a survey and an engineer’s design and fees, but it was doable. Nothing guaranteed until accomplished, but short of that. . .

The perk test passed. But then we got an e-mail from the head planner saying they would ‘likely ask for a wetland specialist’s certification’ that development would not harm any nearby wetlands. So we hired one for the preliminary report and that came back okay. It may cost a bunch more to get it more officially written, if required, but since the conclusion is already made, that may be enough.

We asked for a reduction in the price to 55k given the still existing unknowns and hassles and it was excepted. All the while we were negotiating with the owner of the middle lot and were pretty confident that he would sell as well, giving us the entire block and eliminating the hassles, but we were okay with the possibility that he would not. The day that we accepted the feasibility study and agreed on the 55K – thus clearing the way for closing, our offer (18k) on the middle lot (asking price 30k) was accepted.

We can redivide the land and sell part of it or make it all one. We have several options now. And got the entire block for 73k which is pretty good considering that the 2 asking prices together had been 108K and most places are getting what they ask for if not more! It is just over half an acre but with the forrest next door we have the desired elbow room, plus access to the lake for boating and polar bear swimming is included.

The lake is about 36 acres and surrounded by homes of all kinds. Big and small, old and new, elaborate and simple, plain and ornate. Eclectic. All of the neighbors we have met so far have been very friendly and welcoming. Our kind of neighborhood. Neither of us had ANY interest in living in a senior development.

So the next step is to get a snowbird permit which allows you to put in a well and septic and park an RV there for 90 days per year. This will give us time to figure out what we want to do for a house. We don’t want to wait on the first step because the rules keep getting tightened and we don’t want to be told “too many building already in the area, no more permits.”

In the meantime, Dave’s health continues to improve. Even the neuropathy is slowly receding. Quality of life improves and we are SO glad that we gave up on the maintenance chemo – complete with its ever present expectation of failure. He had been told by his oncologist that he would “’probably not live past the Spring of 2021.” It’s fun to prove them wrong!

You know what? I’m not the only writer here! I’d love to hear back – rants about this crazy world, boring day to day events, latest book read, plans, jokes, whatever.
Keep sane and healthy, Robn

5/15/21 Update

Not sure why I didn’t send this out when I wrote it, but I may as well bring it up to date.
We closed on the first property and signed P&S on the middle lot. Verified that the title was okay and said to go ahead and close. Then we got the Escrow bill and were shocked that they wanted 760.90 from each of us (seller and buyer)! When questioned, I was told that was the minimum for anything up to 100,000 sales price. That’s more than the brokers would have charged if we had used any! I belatedly looked around and found that escrow fees vary all over the map. I got a competing quote for 1250 each!!!!! But I also got one for 381.50 each, which I shared with our company. I was told that they could not honor that quote because it was from a company in another county – the county where the property is located. So I found another quote from one in their county for 385.35 each. Close enough. That one they agreed to match. So that was a 50% saving (rounded) on the escrow fee.

So we are now land owners trying to figure out the next step.
In the meantime Dave has been having trouble with an intermittent fever that he is having trouble shaking. Tested negative for Covid. Doctor says it is bacterial infection. Only bothersome for a couple hours a day, but still.

Happy Holidays (Chapter 16)

This year has been an interesting one.

The global economic and US political (as well as other countries’) situation have sure frayed a lot of nerves and yet there is still optimism for a better 2021. Powerful feelings have led to tension. The amount of misinformation, disinformation, and outright lying on all sides make it harder and harder to recognize reality. All I can fall back on is core beliefs and values – which include empathy, acceptance, tolerance (except towards intolerance), trying to understand other views, and most of all love. These have certainly been challenged this year.

Dave’s leukemia was knocked down to barely detectable after which they said they had no more to offer. So we went Alternative and have been seeing a Naturopath. This has enabled his energy levels to increase and most other Chemo side effects to lessen and heal. He still has numbness in his feet (neuropathy) which interferes with balance and in his mouth which interferes with enjoyment of food. Plus the cancer battle did not exactly make him younger so the toll of aging is still there. Yet we are looking forward to hopefully being able to return to Alegria if Covid restrictions allow and health continues to improve.

Yesterday we walked to the bus (.7 miles), rode to PCC near Greenlake, walked around the lake with hoards of others (3.2 miles including to and from PCC), rode back downtown, walked another .7 miles home, plus miscellaneous (? in the store, etc.) for a total of over 5 miles – finishing up with climbing 4 flights of stairs (loaded with groceries to boot). Not bad! Dave’s phone said we walked closer to 5.6 miles but we are mystified as to how that could be. Actually it said 6.2 miles based on his height of 6ft but his stride is greatly shortened and slowed by my not being able to keep up to his normal pace. So we generally reduce its estimate by 90% which usually comes fairly close as far as we can tell – hence the 5.6 calculated miles according to the phone vs 5 miles estimated from Google Maps. Rather large discrepancy!

Dave spends most of his time on Facebook, given the Covid restrictions, while I spend mine on Quora, picture puzzles, and computer games like Boxed In (my favorite – a challenging logistical game) and card games (3 deck spider, Mrs. Mop, FreeCell), Mahjong and the like. We watch movies and Ted Talks – luckily having similar tastes. So I have been somewhat bored but managing better than many. Covid sure sucks!

Trinidad has been closed ever since about 2 hours before my delayed flight out last Spring so boat sales are pretty much dead in the water and Heidi sits there, pretty much abandoned.

All in all it has been a pretty tough year for a heck of a lot of people, and we feel truly blessed to have each other and our friends and family and our current state of health.

Cheers to all, Happy Holidays, stay well, keep in touch.
Robn and Dave.

A brief update.

The big news from us is they had one case of Legionnaire’s Disease here at Pete Gross House, and it was in the water system for that apartment, so, they are frantically trying to sanitize the water system for the whole building. That is a lot of expense and MAJOR bother for the management here.

Dave & Robn have been doing quite well for months. Dave is generally better than a few months ago. We believe that the T-ALL is being cured.

We recently walked most of the way around Lake Union, just over 5 miles by the route we used. We even stopped for lunch at the Varsity Inn, a nice, reasonable restaurant, just north of Gasworks Park. Like many places in America, they are hit hard by the lack of customers and we like to give them some income. http://varsityinnrestaurant.com/

Sorry to not have said much, but things are pretty good and, until the Legionnaire’s scare, there was not much news to report. We hope that all of you are well and dealing with Covid and election madness well. Please keep being cautious and Covid free.

Hugs,

Dave & Robn

Chapter 15

Date: Fri, Sep 18, 2020 at 2:28 PM
Subject: Chapter 15

Over 3 months since I last wrote.
Initially there was nothing to report as we were in a holding pattern. Then things got really busy and my focus was elsewhere.

What a year!!!

My daughter had to move as her landlord decided he needed to "use her apartment for a friend/pseudo-relative". With no eviction orders in place, rental listings were close to non-existent. Port Townsend is going through its own gentrification process and homes are selling rather than renting. The only place she could find was 40 minutes away from her clients but it’s better than being homeless. It does however, include a garage. Space that she has never before had included in her rent. So we not only moved her stuff from PT to Sequim but also took advantage of the opportunity to empty out a 10×10 storage unit – which included some 16 ft of 2ft deep shelving made of 2×4’s 4 ft off the floor, not to mention more conventional shelving and furniture. This had allowed us to stack stuff up higher than usual. It was mostly her stuff, but Dave and I had a bunch of stuff in there as well rather than rent 2 units.
It took a trip with a U-haul truck for the furniture plus 5 or 6 trips with the RV full of boxes to get everything moved. Dave helped on a couple of the trips but the u-haul trip and other RV trips I did, quite proudly, all by my little self! She did most of the current move from PT with her van – I just dealt mostly with the storage unit. It was a lot of work and I am SO pleased that I was up to it. Made me feel far younger. I actually handled it better than I could have several times in the past when my hips were giving me trouble. NO problems since Taya got me fixed up in 2015 or 2016.

At the same time I have been investigating the possibility of buying a business! Learning how to do due diligence and evaluate a business has been invigorating. I don’t want to go into details on that process at this time but it is certainly taking a lot of my time.

Meanwhile Dave went in for another round of Nelaribine and we got taken by surprise with the news that although the malignancy was down to <0.01 which is as low as they can detect it instead of the hoped for undetectable, they were giving up on that Chemo AND the transplant and recommended maintenance Chemo. They said that the transplant was off the table due to the atrial flutter back in November. This didn’t really make sense to us since they have known about that for the half year they were pushing the idea of transplant. Ah well, we both felt a sense of relief rather than disappointment, so we didn’t press the issue.

Since we were now on maintenance it seemed an appropriate time to see what we could do about restoring health and hence the body’s ability to deal with any remaining malignancy on its own. We had submitted a list of supplements that Dave wanted to take but many of them were contra-indicated due to being on a blood ’thinner’- since the supplements can also ’thin’ the blood. Well, was there a good reason to be on the blood thinner when there was no further indication of atrial flutter? We contacted a cardiologist who had him wear a monitor for a week and reported back that everything was great. No problems. Stay on the drugs! Now, wait a minute. WHY stay on the drugs? “Because.” But they make taking supplements contra-indicated. Oh, okay, you can quit.

Well, unfortunately, we quit the thinner without adding the supplements and it turned out that, without anything to keep the anticoagulation under control, he did, indeed, have a problem. Once again he landed in hospital with pulmonary embolisms and I reckon we won’t try again to get off the thinner.

But the next time we saw the doctor, they again talked about maybe getting back on the transplant list since there had been no sign of the atrial flutter. Dave said to go ahead and inquire.
The visit after that they said, no, if the chemo regiment was hard enough on him to cause the flutter, then no getting back on the list. Again, no disappointment at that news. But an unfortunate sense that it is the bean counters that are deciding whether to recommend such measures depending on the financial numbers rather than on what’s best for the patient. Perhaps just our cynicism showing.
At any rate, he remains on maintenance chemo and I continue to look at business options.

Given my personality, strengths and weaknesses, I am looking for an established service business where there is no need for marketing other than word of mouth and visibility. A laundromat. A print shop. A mailbox/ shipping/ copy/ notary type place. Maybe an internet cafe if they are still in demand. Nothing to do with food or chemicals (laundry soap and ink are okay, just don’t want to swim in the stuff!) If you are aware of any such options or have other ideas, speak up!