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!

chapter 14

Date: Sun, Jun 7, 2020 at 10:37 AM
Subject: chapter 14

It’s been awhile. Nothing worth reporting. Another round of Nelarabine that brought the malignancy down to a barely detectable <0.01, which is not as good as desired but good enough to keep Dave on track for stem cell transplant. Originally we thought that we had no choice but to go with the conventional AMA chemo because the disease was so acute and aggressive that there was simply no time to research alternatives. Now that the malignancy is barely detectable, we were still hoping that we could find alternatives that would keep it there. No such luck. There are alternatives that claim success with other cancers, but none that we have found have claimed success with this particular variety. Which does not mean that he could not be a first, but all those familiar with T-Cell ALL, with whom we have talked, agree that this one is much harder to deal with, and offer no alternatives. So now he is on maintenance chemo until there is a window in the transplant schedule – probably late July or early August.

Wednesday, June 3rd, we went to the dentist for cleanings that had been postponed since last October. Old style manual cleaning instead of sonic due to COVID. No further appointments needed. On the way back when we got to Federal Way aboard the 578 bus from Sumner, (after a Lyft from Bonnie Lake), the driver addressed us all and informed us that the bus was only going as far as the SODO station because Seattle was ‘closed’ due to the protests. So we took the Link from there to Capital Hill, a bus down to the west side of the freeway and walked the remaining half mile. Total of about 3 and a half miles walking, so we got some exercise in addition to the teeth cleaning.

Capital Hill was quiet at that time, but later we saw video footage of Police attacking protesters there earlier in the day. Police were still stationed at the entrance to the Link when we were there. I am heart broken that there is so much violence associated with these protests. The protesters have valid grievances that have been festering and ignored for decades. With emotions running high it is not surprising that provocateurs have managed to incite some rioting, but the reports of property damage, as bad and inexcusable as it may be, seem relatively low under the circumstances.

Since governments want to maintain the status quo, they do not want to have to deal with proponents of change. There are many reports of authorities inciting violence instead. This is presumably as a distraction and in order to have an excuse for total suppression of the protests over George’s killing. There are also reports of other groups instigating violence as well, presumably in hopes of overthrowing the government. And history is replete with false flag actions of instigators framing opposing sides (like ‘warnings of looting’ attributed to Antifa but traced to their nemesis), so that is going on as well. So both sides, those wanting to maintain the status quo and those wanting radical change, are interested in using the public’s anger for their own ends. This does not bode well.

Erica Chenoweth ( https://www.youtube.com/watch?v=YJSehRlU34w ) studied the history of government changes and found that non-violent civil disobedience is more effective than violence in bringing about positive change. Non-violent civil disobedience requires fewer participants (<3.5% of the people), and leads to better and longer lasting results.

The good news is that, along with the reports of violence and understandable calls for stronger efforts to quell the rioting, there are also reports of police expressing solidarity with peaceful protesters and even taking a knee. But at least one of these appeared to be only a photo op as on the following day the same police department exhibited brutality. There are peaceful (some armed) protesters condemning and providing protection from rioters. Though I worry about them possibly deciding they need to use force rather than just intimidation because, so far as I know, their ammo is lethal. We should not add vigilantism to the mix.

There are people expressing ideas of what needs to be done to make lasting positive change. I have heard speeches from leaders calling for specific action, admitting that words are not enough. People are patronizing minority owned businesses in increasing numbers to show and provide support. A pizza franchise owner offered employees paid time off if they wished to join the protests! GoFundMe accounts to help the victims of vandalism. These all tend to get less press coverage since the media feeds on mayhem, but thankfully these reports are also available. Only time will tell whether these saner voices will be able to prevail.

I have seen no mention of estimates of total numbers of protesters but it would appear to be numbers not seen since the sixties and only a few have been provoked into riots – frequently by the police themselves. The rioting is extremely troublesome since it is counter productive, to say the least, and it needs to be dealt with. On the other hand, it must not be allowed to detract from the message of the peaceful protesters who are legally seeking redress for genuine grievances – grievances highlighted over and over again by the unprovoked brutality of too many bad apples among the police. I don’t care for bad apples in either barrel, but I find them more inexcusable in the paid professional barrel than in the reactive civilian barrel.

There is cause for hope! I hope you will join us in supporting the minority community and their businesses.

Robn

A tiny update from Dave

I am continuing toward the Bone Marrow/stem cell transplant in late July.

They used a different chemo in my spinal fluid on the 13th and it was much worse that expected, but I recovered. Mostly I was surprised,as I thought it would be like the others.

We walked to Whole Foods at 7AM today. 0700 to 0800 is 60 yrs old and older. It is abt 0.7 miles each way. I needed to rest on the way home, but we made it OK. They are not stocking some items, but most things are on the shelves. When we got home we realized that they over charged us on several items, so, we will be more careful next time.

We will probably go to Safeway on the early, seniors only, free shuttle on Tues, or Thurs, for Safeway stuff.

Dave

Chapter 13

I got tickets to fly to Trinidad on the 7th returning on the 23rd. That would give me 14 days there to sort out my stuff, throw a lot away and give away still other stuff. I also wanted to get pictures and make notes of what materials were for what project and such.

It looked like the best opportunity to go since there was no way of knowing how Dave’s health would be later and if not good, it would make it harder to go. I would have picked an earlier date in hopes of being back before the next biopsy but there was a seminar on clinical trial options scheduled for the 7th that I wanted to go to. It was to include a one on one discussion of Dave’s particular options and would be over in time for me to get to the airport for the flight.

Friday we got word that the seminar was canceled due to the Coronavirus. I wondered if there was any risk of going to Trinidad. Was there any risk that I would end up quarantined there and not allowed back? That did not seem likely. And perhaps, if conditions changed, I might be able to fly back earlier.

So I went. The first leg of the trip, to Houston, had less than 1/3 occupancy – there were a bit more than 3 seats per person so we were all able to stretch out if desired. A long layover in Houston gave me a chance to learn my way around the airport. Then the next leg was about 40% full. Once aboard Heidi I opened my computer to let Dave know I had made it safe and it connected up to Power Boats wi-fi with out any hesitation or password – and at excellent speeds! Glory be! Best connection I have had in ages. (Not that it lasted!)

Trinidad had switched their 100TT bills from cotton to plastic and originally set the expiration for the old bills at the end of last year at which time they would become worthless. A hue and cry got them to extend the chance to exchange them to March 31 – provided you could prove extenuating circumstances that prevented an earlier exchange. . So Monday I took in my 1,100 TT to the Central Bank as required and found that it was only doable on Tuesday, Wednesday, and Thursday. Wasted morning. I don’t have time to waste. I was not a happy camper.

But I managed to get a new sim card for the phone since our US carrier did not offer roaming and I needed communication. So not a total waste.

Tuesday I plunged into the job and started lugging stuff to the laundry room where there is a shelf for freebies. There was no free space to sort stuff into and I couldn’t see a best way to tackle it.

I would spend a day sorting and moving stuff and not finding what I came to get. Had I already put them in storage in WA and forgotten? Then, on average, the next day I would crater. I was tired, physically, mentally, and emotionally, and I guess even spiritually. I was frequently in tears, still trying to come to grips with giving up a much loved home and life style. In addition to the pending parting and all the memories affecting me emotionally, all the decision making was mentally taxing, and the Leukemia and coronavirus and political issues were affecting my spirit. Cratering more of less every other day reminded me of all the cratering I did when I lost Gerhard. At first going up the ladder and climbing over the rail would tire me enough to want a break but towards the end I must have been up and down it twenty times a day without trouble. Amazing how easy it is to get out of shape but so far I can still get back in shape.

And on top of all that I wasn’t bothering to eat much. I didn’t want to take time to shop and cook and clean and ration to avoid left overs. Besides I wasn’t hungry and was 30 lbs overweight! There was some miso soup and electrolyte drink mixes on board. I had had a salad in Houston and a tomato juice on the flight. Had a fresh coconut water. Some Sahina’s and one of Chickie’s sandwiches. Two small apples. A couple of pastries from Dockside Food Mart and beet/linseed drinks. 200 grams of cheddar cheese, some cashews, and at the Thursday pot luck there was mashed potatoes, pickled beets, and brownies. And lastly, a couple of home made english muffins that my neighbor offered me. How’s that for two weeks intake? Not the most balanced diet in the world but better than a total fast given my energy output.

Thursday I felt I had made enough of a dent in the clutter to have the broker come and see her. (Only open Tu, Thur, Fri.)

Tuesday of the second week, I went again to the Central Bank to exchange my 1100 and 900 from another boat for new bills. There were already a good hundred people in line for the same thing! I finally got my errand done at 12:15 after two hours in line and saw another hundred people still waiting for their turn! There were signs everywhere saying that if we wanted to wait we should stay 6 feet apart from each other. Uh? How? When I got up to the head of the line right underneath one of the signs, one of the security guards directed me to move up close behind the guy in front of me, inside the line on the pavement. Inside there were 3 women handling paper work with a double row of tables between them and us. That magic 6 feet.

Stopped at West Mall on the way home for a smoothie (forgotten on the above list) and to see if there was any hand sanitizer available – who was I kidding?

Among all the other activities I was trying to figure out what a fair price would be for Heidi. Dave was already in communication with an interested party who was stuck up in Martinique unable to come down and see her. I have no clue as to whether this virus will affect the market in favor of buyers or sellers but it will probably put the kibosh on all sales until people can come and look.

As the days went by the movement restrictions kept getting tighter. The first week was pretty much just advice to wash hands. The second Tuesday had recommendations for social distancing. I think that was also the last day they would let in foreigners and a boat did arrive barely in time to not get turned away. By Thursday the pot luck was canceled as were all other group activities. I kept checking that my flight was still a go. Checked if there was an earlier flight available – No. Saturday – the day before my flight there was an announcement of a total shut down /lock out Sunday night. Even nationals would not be allowed in after that! My flight was at 12:05 Monday morning. When exactly did the “Sunday Night” ban start? No further info on Saturday. On Sunday it was confirmed that it was a midnight closure. 12:05 is after midnight. But apparently it was okay because the boarding would be completed before midnight. Cutting it close! As it turned out the flight was delayed and did not take off until 1:50 AM, but we were still good to go. So I was on the last flight out of Trinidad until the quarantine is lifted. Not counting cargo flights.

Friday the 20th, Mark came again and I showed him what I had been able to do and also showed him the storage locker containing 7 of the sails, the life raft, jerry cans, cable cutters, docking lines, anchor, and anchor rope among other stuff. I had glanced in it a week earlier and seen nothing of interest. Only a lot of dirt that I didn’t feel up to dealing with. But Mark was interested in what all else was in there and poked around a bit. Thank God he did. He found a bunch of my missing treasures! We pulled out books and letters and jewelry and such and he helped me move it all. He asked about the other wall of the locker and I said no, there’s nothing there. But Dave convinced me to check further and sure enough there was indeed more treasure!

My grandmother wrote a book of poetry and another of family history, published as a limited edition just for family members. I sure didn’t want to lose that! I also have a book of lyrics typed out on a ditto machine (from the look of it) with chord notes written by a young man from Sweden who sailed with us on the Merry Maiden in the Bahamas back in 1970! Also about 20 pounds worth of journal letters from then and later. A whole lot of papers that probably belong in the trash but are so time consuming to cull! And on and on. I had already packed up three suitcases with 50, 50 and 35 pounds worth of stuff before discovering the locker treasure. So then I got out yet another suitcase and filled it up with 50 pounds culled from the locker.

I also kept finding stashes of bottles of all sorts cut down for mixing epoxy. And zip lock bags, and trash bags and shopping bags and scraps of materials – metal, pvc, wood, foam, bubble wrap, you name it. Far more than I had any awareness of. Perhaps 2 cubic meters of it! Some of it found new homes, most went in the trash. The sort of stuff that is so dang useful and hard to come by when needed if not hoarded. I sure don’t want to have to buy a 4 x 8 ft sheet of rigid structural foam when I only need a square ft. I did leave a small collection on board.

Given all the talk about coronavirus being easily caught and transmitted by people who are totally unaware of even having been exposed and therefor staying clear of at risk people until sure (as one can be) of not being infected, we decided that I would just hunker down in Riva (our camper) for two weeks.

In the meantime Dave was managing just fine without me. He even figured out how to waterproof his PICC dressing alone. He reports feeling steadily a bit better. Slight improvement in grip strength. Improved walking though feet still seem numb. He had another bone marrow biopsy on the 18th while I was gone and we got the results yesterday the 24th. Good but not as good as hoped. Count dropped from 0.12 to 0.02 on the edge of an order of magnitude. They had hoped it would be undetectable but no such luck. So he is not yet a candidate for stem cell transplant, and may never be – especially with the virus making them riskier than ever and putting a strain on the hospitals. Instead, he will have another round of Nelarabine this coming Friday (March 27th), Sunday, and Tuesday. Again without me. But if he has a reaction to it and we decide that his need for help (very unlikely) is greater than the risk of me being contagious after having picked up something at the airport then I do have the option of joining him. We had the most recent consult with Dr. Casaday via telehealth which actually worked fairly well. Dave and I experimented with the app before hand but decided that I would just connect to Dave via ordinary speaker phone while he connected via Zoom. During the experiment I got to see him and was thrilled to see eyebrows and mustache, and a little goatee and a sparkle in his eyes. He is both looking better and feeling better. And, his voice is better! Sure hope it lasts a lot longer than they expect. In fact, we are counting on it.

I much appreciated Michael picking me up at the airport as dealing with 3 50lb suitcases and a 35lb er and a 15 lb backpack would have been a challenge. Plus I wanted to get some groceries before going into quarantine.

What have I left out? Oh, Mark suggested 35,000 asking price for Heidi which was pretty much what I expected. But who knows when boat shopping will resume?

I sure do hope that people realize from this snafu of a pandemic that our health care system is no longer acceptable. Nor is it healthy to have so many people unable to take sick time off work. Changes are vital and now is the time. Not having an intelligent healthcare, sick leave, child care system, etc, is costing America a lot more money. Bernie was right, again.

Air travel during the pandemic.

Robn just needed to fly from Seattle to Houston, then Houston to Trinidad. Each of the two flights was less than 40% full.

I am told that in order to keep "their slots" airlines are wasting millions of gallons of jet fuel and unneeded pollution, flying near empty planes where they should combine flights to save money and pollution.

Stay safe, everyone. All of Italy is in Lock down and the rumor mills say Seattle will lock down soon.

Dave

chapter 12

chapter 12

Before I bring you up to date, I want to mention that I am thinking of flying to Trinidad in order to gather my personal belongings from Heidi and see what I can do about selling her. Dave is currently doing well enough to function alone without me for 10 – 14 days. The next round of Nelarabine could change that – or some other problem. It would be far far better if someone could come and stay with him at the Pete Gross House while I am gone in case of emergency. If there is anyone on this mailing list with some free time who could do so, please let us know soon. Guessing March 9th to 20th give or take.

Insurance approved the Nelarabine, so he received a round of that. This one only takes two hours each on days 1, 3, and 5 of the cycle. (Jan 31st, Feb 2, Feb 4) So no hospitalization. Infusions were done at SCCA outpatient clinic. Labs every few days continue to keep an eye on blood counts and possible need for blood products. None needed this go around. PICC dressing changes every 6 days or so. No growth hormone. Such a different regimen for the same disease! And of course other leukemias are treated differently as well, let alone all the other cancers. Truly tailored treatment depending on each individual. No one size fits all.

Tuesday, Feb 18th he had both Lumbar Punch and Bone Marrow Biopsy. Friday we went in for the results. The malignant cells had been further reduced but were unfortunately still detectable. Recommended another round of Nelarabine. Side effects of weakness (hands and legs) still present. No way of knowing if another round of Nelarbine would exacerbate the weakness. But no better options believed to be available. There is a Clinical Trial for a CAR-T immune support procedure but it is only offered for people who have failed to respond to other treatments or relapsed without getting too debilitated. Dave’s response has not been as good as hoped, but good enough to disqualify him from the trial. At least at this point. If he gets worse down the road but is still healthy enough otherwise AND the trial is still ongoing, then MAYBE he could qualify for that.

On the 7th of Feb we had a two hour long visit with Dr. Krakow regarding the ins and outs of Transplants. Way too much to digest at one go. T-ALL is not curable with Chemo. Period. As I understand it, there is no real way to give any kind of prognosis – at least with T-ALL. Results of potential treatments: unpredictable when you come right down to it. They knock down the malignant cells but sooner or later they come back. T-ALL is particularly aggressive, meaning fast growing – doubling every 12 days of so. How long it takes to come back varies but is usually fairly quick – a matter of months. They may be able to lengthen that somewhat with low dose maintenance chemo – i.e. pills.

Results of stopping treatment whether ‘completed’ or not: the malignant cells take over the bone marrow again, red blood cells, healthy white blood cells, and platelets all cease to be made in sufficient numbers. This leads to anemia, risk of infection, and risk of bleeding excessively if injured. Again, no problem until you get cut or get infected or exceed your oxygen supply. Infection is the biggest killer as it tends to lead to sepsis, while the others can be treated with infusions. There is another problem with this kind of Leukemia. The malignant cells are sort of “sticky” so they run amuck and clump together and plug up organs and can thereby cause failure of said organs.

There are no drugs that will completely stop the malignant cells. There are always some that survive and they tend to be better able to withstand the drugs. So the life expectancy of the host is dependent on how far down they can be knocked and how long it takes them to come back.

The malignant cells can, however, be eradicated by healthy immune cells from a transplant – sometimes. The process is fraught with difficulties. The result, if successful, is a Leukemia free patient with new problems, most often Graft Versus Host Disease. Drug side effects also cause problems. In the case of T Cell Acute Lymphoblastic Leukemia, which is what Dave has, the difficulties are greater than with other kinds. But in case he decides to go that route, they already have a list of about 32 possible donors who would need to be further screened for best match.

Between the fast growth, the sticky nature, and the fact that it is the very cells normally responsible for keeping cancer in check that have gone malignant, the success rate leaves something to be desired.

First the current bone marrow is killed off as completely as the drugs available will do the job so that the malignant cells are minimized. The production of all the necessary blood cells comes to a near stop and infusions of donor blood products is needed and infection risk is high. The first donation is stem cells from a matched donor that develop into blood cells including healthy T-cells and take over the body’s immune function.

The first problem is that this is a slow process. It takes a fair amount of time for the new cells to establish themselves and learn what to attack. In the meantimes the remaining malignant cells are multiplying fast and may crowd out the new cell production just as they did the old one. In which case, the transplant fails.

If the new white cells succeed in establishing themselves they can kill off the malignant cells but can also decide that healthy cells must also be destroyed since they are also foreign from the point of view of the imported cells. So drugs are needed to keep them from doing that, which means that their ability to fight off infections is also debilitated! Hopefully, eventually, the new white cells learn what to attack and what to leave alone.

All of this involves a huge toll on the body with side effects from the drugs as well as attacks by the new cells on malignant cells and healthy cells on top of the normal infection battles that we normally never even notice. It was way too much information to absorb in one sitting. We had the opportunity to ask questions but they did not occur at the time. Plenty came to mind later.

With T-ALL there are a lot of malignant immature white blood cells. Are there any healthy T-cells? I gather there is no known way to support them. In a transplant, the donor T-Cells, small in number as they are, still vastly outnumber any healthy T-Cells of the host? Thus giving them a chance that the host’s cells don’t have? But if they still get overwhelmed by the aggressive malignancy, wouldn’t a larger implant work better? Or is it the learning that is slow rather than growth in numbers? What is it that takes time for the new cells?

So sometime next week will be another round of Nelarabine.

In the meantime, we have finally returned somewhat to living – as opposed to just existing. We finally found a place that allows us to use their fitness equipment through the Silver Sneakers Program which both of our Medicare Insurance providers include. So we don’t have to spend any money! Glory be! It is about a 15 minute walk from here so no transportation costs either. They included a one hour session with a trainer who suggested a collection of exercises. I’ve been going pretty much every other day, only once alone as Dave wasn’t up to going that day. I can’t say that I really enjoy it, but I want to get into the habit and improve our fitness levels, which have been suffering.

We have also attended a couple of activist actions. Fridays for Future Climate Strike, Extinction Rebellion planning meeting.
We are also going out on the water on Sundays – 4 times so far. On the steam boat Puffin the second and third times.
We visited the Museum of History and Industry.
Relocated Riva (after doing a bunch of shopping with her) at another friend’s place and enjoyed a group Italian Meal and Sauna with them.
Went to the Tacoma Dome to attend Bernie’s Rally but only Dave got to go in as we had brought backpacks that were not allowed in.

It looks like treatment will be ongoing for several months but with or without it the chances of actually going cruising again are too slim to justify hanging onto the boats. It is time to sell Heidi. She is currently a project boat as she is not ready to launch and sail, but she is still a good, quality boat. All or very nearly all materials needed to complete the projects are already purchased. If you know anyone who might be interested in her, please speak up.

Chapter 11

The holidays, thankfully, continued without drama. No ER visits. Even the cold failed to ever become full blown. Temperature was slightly elevated a couple times but remained normal. Everything so uneventful that I have not been in touch for a full month now! Or at least until last Friday.

Tuesday, January 21st there were CT scans – of the head regarding the hematoma, and the abdomen for lymph involvement with the Leukemia. Apparently they had shown involvement way back in the beginning – not that we ever heard. They also showed good improvement.

So Wednesday we got word that the hematoma had resolved to the point that no more follow ups were warranted, that only an expert would be able to see any residual signs of it. Then came the bone marrow biopsy – the second one to check on progress.

Friday we went in to see Dr. Cassaday expecting to go into round 5 the next day at +2 dosage level. All had gone well during the past 3 weeks. Dave had walked 22 miles during the chemo and could have done more except for all the interruptions. We were feeling very positive.

Unfortunately, the bone marrow results were not so positive. They had dropped from 1.8 to .4 which was not good enough. Normally they expect to see 0. Nothing detectable by this stage half way through the trial. And then they do another 4 rounds to deal with the stuff they can’t even detect! Talk about fear of “aggressive” T-ALL. So .4 was evidence, they said, of failure to respond to the treatment and Dave’s participation was terminated.

So the next thing to try, he decided, was Nelarabine. A 1 in 3 chance of better results. Trouble is, he is wanting to use it in a somewhat off label way. A way which could raise objections from insurance. Given that Dave’s insurance doesn’t want to deal with SCCA anyway, and the high price tag of Nelarabine, approval is not assured. So we are in limbo while awaiting insurance response.

The termination of his participation in the clinical trial was certainly a crushing blow. Medicare’s approval now has no more influence on Aetna. If we need to find a new oncologist, that means we also need to find new housing. Stress. Just what the doctor ordered to improve healing chances!

I am angry, worried, scared, overwhelmed, and unable to label all the other emotions vying for attention. Dave seems to be unaffected. His confidence that he will continue to do well seems unaffected. His reassurances are encouraging. I only wish his confidence was more contagious. I think if it was just the treatment question, I would be okay. It is the housing and insurance issues on top that are getting to me.

We are looking into alternative therapies. Given that the Nelarabine has a poor track record (at least with T-ALL) plus side effects, it only makes sense to look at all options. Unfortunately this kind of Leukemia is rare enough that there simply isn’t much data out there, so far as we can tell, let alone success stories to attempt to emulate. It is so aggressive that it doesn’t give much opportunity to experiment.

There appear to be two main cancer diets that people hold out for hope. Gerson and Budwig. And boy do they disagree on some of their recommendations! One says NO coconut oil. The other says YES coconut oil. One says NO this or that and the other says the opposite. They do agree on many things – like staying away from processed foods which I consider a no brainer. And yet we have fallen off that horse and have been eating quite a bit of convenience food – like organic frozen veggie burgers. It all leaves the head spinning and no sense of which way to go.

We are already drowning in conflicting advice, I don’t see how more information could possibly make it worse. So, please, if you happen to know of anything that is relevant to ALL (Acute Lymphoblastic Leukemia) – especially the T-cell variety, please share it.

Sunday we went out for a sail on the Pelican, a free Sunday offering of the Center For Wooden Boats. We had walked down there for exercise the previous Sunday and learned about it. This Sunday I was feeling a desperate need for some activity other than sleep, internet, movies, and eating. I suddenly realized what day of the week it was and wanted a ‘water activity fix’. Just the thought of getting out on the water made me choke up. We sailed up (as passengers) to Gas Works Park, and part way back. Rain was coming and so was a tow boat. They got us in before we had a chance to get soaked – only slightly wet. We assumed it was due to the rain, but it turned out that the gaff arm was not holding up the head of the sail and that was why they came out.

We have signed up for rowing classes – indoor equivalent to skulling – as an all around exercise that I think we will both enjoy. First go is no charge. So many of these exercise programs you have to shell out an arm and a leg before being able to find out if it is suitable for yourself.

Till next:

Robn

chapter 10: routine

Posted Date: Thu, Dec 26, 2019 at 1:32 PM

Happy Holidays to All.
Chapter 10: routine

Finally had an uneventful outpatient stay albeit short since it was time for round three. We thought it was going to be Friday the 13th, but it turned out to be Saturday. The biggest concern of the moment was his voice which has been gravelly or hoarse since the intubation for the surgery. It was hardly surprising – especially since he had not fully recovered from the mucositis at the time and it was hence easier for the vocal chords to be injured. There was a tacit assumption that they would heal on their own. After 5 weeks, however, we are becoming concerned that it could become chronic and wish to see an Ear Nose Throat specialist.

On Wednesday, Dec 11th, we went to Harborview for yet another CT scan for a revisit of the option for an artificial embolism to ensure no more brain bleeding. Dr. Levitt again assured us that healing was going well and there was no cause for a procedure. He says the person who reported a small re-bleed was mistaken and it was only the ongoing process of healing.

From there we decided to walk the 1.5 miles downhill to the Pete Gross House. The route uses a long diagonal bridge over I5. It slopes downhill and that turned out to be uncomfortable. Dave’s legs felt like “rubber” but there was no place on the bridge to rest. Once we got to the other side we stopped at the nearest building and asked if he could sit down for a few minutes. The building was Seattle Children’s Research Facility and the inner door was locked. The guard who responded to our testing the door informed us that she was not allowed to let anyone in – cancer patient or no. So we sat down on a bench between the inner and outer doors. She said we could not sit there either. If we did not leave she would call security. (De ja vous? I seem to remember this happening before.)

What on earth is happening to this world of ours? We went and found a bench at a bus stop and sat for a few minutes on the cold metal bench. We then found a nearby Vietnamese restaurant for a longer break and some interesting food. After that it was misting and for once I was not carrying umbrellas. We walked as far as SCCA House which happened to be directly on route and the shuttle was there. It was getting wetter and we had already walked 1.2 miles so we caught the shuttle for a lift the remaining .3 miles.

Friday we went to the Clinic for the standard blood draw, PICC dressing change, and visit with Dr. Cassaday. He confirmed that there would, again, be no adjustment to the chemo dosage, that the lumbar punches would be skipped, and that we needed to do outpatient visits at SCCA not Bothell or Renton as our insurance carrier wanted. We should be able to get help straightening that out. Also that we should talk to UW about the vocal chord issue, as there is no one at SCCA that deals with that.

Saturday we went in and while getting Chemo, Dave walked the halls to the tune of 19 miles! Not only did he do 19 miles but he did many of them at a pace where I struggled to keep up. Struggled to the point that I got shin splints and had to quit! He did feel his energy flagging as the Chemo progressed, but no other issues.

We had a visit from ENT (Ear Nose & Throat Docto) regarding the gravelly voice and she confirmed that there was still a bit of swelling from the intubation but did not feel it was enough to explain the voice issue. One of the two chords is not flexing as well as it should be – which she thought was age related. There is also some “bowing”, also age related according to her. She said they could give an injection which might help but would only last 3 months. It could then be repeated. If desired, a more permanent implant could be inserted via surgery. Without treatment she believes his current voice will stay as it is. It won’t get worse and it won’t get better.

Well if the treatment is only temporary and not treating it will have no repercussions, then the risk, as low as it may be, does not seem warranted. If he changes his mind, it can be done down the road. My gut takes issue with what I understood her to claim. She acknowledged some residual minor signs of trauma from the intubation, still healing, but believed the voice change to be age related. Sorry. His voice changed dramatically at the time of surgery. One way before, the other way afterward. No time delay. And it has gotten better and is still getting better.
So we are hopeful that it will return to normal eventually, but if not, so be it. He says it now reminds him of Janis Joplin.

Wednesday was the last day of Chemo and they said we could go home if we wanted to but it didn’t finish until about 6 PM and we needed to go grocery shopping on the way home. Preferred to do all that during the day and be sure there was no reaction to the pint of blood they decided to give him due to low hematocrit of 26, and get the PICC dressing changed. Perhaps we should be checking out ASAP as we don’t yet know how the insurance is going to work, but we are keeping fingers crossed on that score.

Under Medicare we have to pay $1364 (this year) plus 20% of expenses (above the $1364) for the first 60 days, plus $352 (year 2020) per day for days 61 through 90, plus 682 per day for days 91 through 150, plus anything not covered, plus ALL expenses after day 150 (hopefully at Medicare approved rates! rather than their 20 fold retail prices) — IF I understand the rules correctly. Unless there is a 60 day break with no time in hospital, in which case it starts over.

Under Part B we pay $185 deductible plus 20% copay on everything outpatient plus anything not covered.

His treatment, in a best case scenario involves 6 days in patient out of every 21 days, times 8 rounds = 48 days out of 168. So that would be the $1364 (Part A) plus 20% copay plus $185 (Part B) plus 20% copay, plus everything not covered. Which is a heck of a lot of unknowns. However, we have already had three additional admits plus 4 days getting diagnosed before commencing the treatment. The kidney infection/mucositis from Oct 27 to Nov 5th added another 9 or 10 days. Then the Hematoma hospitalized him from 11/8 to 11/13 for another 5 or 6 days. (I’m not clear on how they count their “days”). Once again, for the Pulmonary Embolism, he was in from 12/5 to 12/9 – 4 or 5 days over and above the Chemo regimen. So that makes at least 22 additional days already. Ten of those days are already into the $352 dollar per day, And that’s not considering the possibility of transplant treatment. No idea how much is involved in that.

BUT, that is Medicare rules. We have Aetna Medicare Advantage. They work things the other way around. We would pay coinsurance until we reached $6500 “maximum out of pocket” instead of 1364 deductible, but then they pay the rest – except, of course, for anything not covered – and not covered includes “out of network” care which includes SCCA. So they don’t normally cover SCCA bills but they did authorize the growth hormone shots given there to the tune of some $15000 approved price! – per shot times 8 total. $120,000 just for the growth hormone shots! Aetna said we needed to pay about $856 dollars each for them, but then said “it appears these claims are related to a clinical trial so we need the Medicare EOB before proceeding.” Which tells us nothing.

Medicare would charge us a 20% copay of about 3000 each for those shots. Are you confused? I sure am. I have zero information on how the Medicare coverage of clinical trials affects what Aetna pays. SCCA financial told me “Medicare pays 80%, Medigap pays the other 20%.” Ignoring, of course, all the loopholes. But we don’t have Medigap, we have Medicare Advantage, which is not the same.

Enough on our crazy “insurance” system. We also had a visit from UW Studies which at first we thought was related to the clinical trial but turned out to be a study on improving communication regarding future care for if and when the patient is unable to make or communicate their desires. i.e. end of life decisions. This seems like a valuable goal. Poop happens and please plan for some common, ‘what ifs’. During and after are too late.

So where was I? Departing UW after round three. Seaton, once again (bless him) took us home by way of grocery shopping. My shin splints were getting aggravated more by the minute so we only made the one stop. Back at home Dave’s energy flagged. Stuffed nose and sore throat heralded a cold – a scary possibility for cancer patients when their white blood cell counts are dangerously low, but Dave’s are still high enough to make the cold the minor annoyance it is for most. On the other hand, his blood counts are on the way down. Growth hormone shot to put the brakes on that. Afterwards the numbers continue to decline for several days before climbing once again.

Platelets plummeted between Friday and Monday and if they continued down at the same rate, he would need a platelet transfusion before the next check on Thursday. So the check was rescheduled for Christmas day and infusion of platelets scheduled “in case”. The infusion was cancelled, however, as his count had leveled off and was still well above the 75 threshold for infusion. A threshold higher than normal due to his history of bleed plus the blood “thinner” he now takes.

Discussed his shortness of breath (not as severe as before the PE was found) and tiredness. There are SO many things that could be causing or contributing to it. But not hemoglobin – that number is almost a record high for post diagnosis. Decided that it was not yet of concern, but that he should have a low threshold in deciding to go to the ED/ER if it got worse. Got the PICC dressing changed again as it was starting to come loose and the nurse was a bit bored. The infusion department was the only section open for Christmas Day and business was thankfully slow.

Today, Thursday, Boxing Day, we were going to go in for an Integrative Medicine Consult, but it got cancelled and, since the PICC dressing was already done as well as the CBC, we have the day “off.”
I went by shuttle to the grocery store and used their handicap motorized shopping cart. My shin splints are tender just from the to and fro and would not have tolerated shopping on foot.

So, with no ER visits this time, we are doing well. Hope everyone had/is having a wonderful Holiday.

Love, Robn and Dave.

Short Version #2

This is a shorter version of Dave’s Adventure with T-cell acute lymphoblastic leukaemia (T-ALL) which is a type of acute leukemia meaning that it is aggressive and progresses quickly.

EDIT: The really short version on 17 Dec, is that I am almost through with my 3rd round of Chemo and doing really well. 6 to 8 rounds is typical. The medium length version follows and the detailed versions are on separate pages.

Normally, I am getting Chemo in Hospital then I am sent home for a couple of weeks and the cycle repeats every 21 days. I get 96 hours of continuous Chemo into a PICC line. The PICC Line is a tube in my right bicep, that follows the main artery back to 75mm above the heart. This allows the very slow drip of Chemo to be mixed and diluted before it goes into the cells of my body.

As I said, I get 4 days of the main Chemo and then one hour of another Chemo. So, about 5 days of treatment in Hospital and then I am out to recover, then it begins again. Today, 14 Dec, I am beginning the 3rd Round.

But, on 9 Nov, I had surgery for a brain bleed. A subdural hematoma. They cut a 45mm hole in my skull and cleaned out what they could of a 22mm thick, large crescent shaped clot. My body is cleaning up the leftovers, giving me frequent mild headaches. Round two of chemo was delayed for 2 weeks while healing from this.

I have also had several Emergency Department visits that were clearly not expected and I was discharged from Round 2 of Chemo on 27 Nov. The next day, American Thanksgiving, I appear to have gotten a large Pulmonary Embolism, a blood clot in my lung(s). That made me very tired and lethargic, until 2:45AM, Thursday the 5th of Dec, when I woke up with a strange, strong pressure in the area of my sternum. However, my lethargy was gone and I felt better than I had in weeks. Ironic.

Off to the Emergency Department again, where they found several clots in my lungs and legs. They pondered for several days

the idea of giving me ‘blood thinners’. They do not actually thin the blood, but they affect one or more of the clotting factors. This is because, like in a stream with tree branches being carried along, the ‘clot’ does not usually completely stop the blood flow, but as blood leaks around the ‘clot’ these ‘tree branches’ cause the ‘clot’ to grow and grow. I will be on the ‘thinner’ for months, and must be careful not to cut myself.

The various kinds of ‘blood thinners’ make ‘clots’ less likely, but with the history of a large bleed in my skull, you want things to not leak. Catch 22.

They decided on the best choice and sent me home. I am doing pretty well. So well that I walked about 1.5 miles (2.4km) downhill on the way home from our latest check up regarding the brain bleed. But, it was downhill, dropping about 217ft (66m) and after about a mile, my legs were like rubber, so, we had lunch in a restaurant, and rested. When we were continuing it began to rain and we had no umbrellas, so we caught the free shuttle from the SCCA House to our apartment at the Pete Gross house.

My calves are still sore several days later. I overdid it. As most of us have learned, walking downhill can be worse that uphill at times.

This is the ‘short version’ of Dave’s illness, from 15 Oct to 14 Dec, 2019.

Chapter 9: New Twist.

On Mon, Dec 9, 2019 at 10:28 AM robn wrote:

Two Forty Five Thursday morning, December 5th, Dave awoke with a feeling of pressure in/on his chest. It was not painful. It would not have seemed worrisome except that any and all new symptoms are not to be taken lightly when dealing with Leukemia and Chemo – plus, of course, there are constant messages warning that anything of the nature, regardless of other issues, warrants a trip to the ER.

Nevertheless, we called the clinic and were, indeed, directed to go to the ER. He got up to do so, and found the past week’s lethargy and shortness of breath greatly reduced. He felt better than at any time during the past week! Shades of his first trip to the ER when he walked in feeling good and with no fever but with the white blood cell count in the stratosphere. So, despite feeling good, we dutifully took a Lyft to the ER or rather the ED as they call it now.

None of television’s dramatic promptness. Explain symptoms to admit clerk, show ID, sign papers, have a seat. Bounced off the seats as his name was called. Got vitals taken, answered questions, walked to the back of the department to room 14. ER doctor came in and repeated the questions. The head doctor came in and repeated them again. Other specialists came during the ensuing hours to ask yet again.

An EKG was ordered and yet another CT scan and I wish I had been taking notes because I sure don’t remember all the different things they did. There were a lot. Blood test for residual heart attack telltales – negative. Another CT 4 hours after the first for comparison’s sake. Etc.

Unfortunately, they found lung clots. Pulmonary embolisms. Several. And more clots in the leg – the leg clot was presumably where the lung clots had come from. Hematology, Oncology, Cardiology, Neurosurgery, Pulmonology, (and I think some others) were all kibitzing with the ER doctors. Lung clots are normally treated with blood thinners. Period. Simple. Out, finish. At least in cases that are not more severe. The blood thinners do not actually do anything to break down existing clots but work, instead, to ensure they don’t get bigger nor joined by new ones.

But not so simple in his case. Blood thinners increase the risk of the hematoma bleeding again. However, the clots are far more threatening to life than the bleeds, and there was evidence that the heart was being strained by the back pressure, adding to the risk. And the hematoma was still healing nicely. The question was not whether to treat the embolisms, but how.

So for the forth time in two months he was admitted back into 8SA – into a fifth room since he occupied two different rooms before and after the craniotomy.

As usual, they had no empty beds at the time the decision was made to admit, so he stayed in the ER until one became available. In the meantime I took the shuttle back to Pete Gross House to pack and clean and dump the compost, check mail, pay the rent, etc. My packing produced 6 containers of stuff –more than I wanted to deal with by Lyft, let alone shuttle! Dave still did not have a bed and I didn’t want to take everything to the ER, so I waited at PGH until my brother, Seaton, could once again play moving van at 6:15 PM and Dave had, by then, been assigned to 8SA room 8430.

Dr. Dan Martin, hematologist, came to see us, saying that he had spent half an hour looking over Dave’s chart and wanted to be sure his summary of the history was correct. He had a basically good grasp but we filled in some gaps – like the fact that he was feeling sooo much better after the chest pressure incident.

Dave’s theory is that a clot or clots was/were robbing him of a great deal of oxygen during that week but that at the time of the pressure, they moved to a less compromising position, freeing up access to oxygenate the blood. They all seem to agree that this is a plausible explanation.

But, just because he feels so much better does not mean that the danger is over. They started him on a low dose of IV heparin keeping a sharp eye, through frequent blood tests, to be sure that the level did not go higher than necessary in order to reduce the risk of a new bleed in the hematoma, while still being therapeutic. But, IV heparin is an in patient treatment. What to do when outside? After spending an hour or so discussing options and symptoms and risks, etc., he said he would sleep on it, do more research, and cogitate as well as consult. He would probably be back around 11 the next morning.

We didn’t see him until around 3:30. He again commented that Dave’s was a tough case, a tight rope walking challenge. But he had decided to recommend a relatively new drug, Eloquis (Apixiban). He felt the risk of a bleed would be acceptable – as low or lower than the alternatives. But since it is taken twice a day 12 hours apart, 9 AM and 9 PM seemed a good time. So he is staying on the heparin until 9PM and then switching to the Eloquis. We will then wait a while to see if there are any negative repercussions, before heading home for the last few days before round three of Chemo.

In the meantime we have been continuing to tackle bits and pieces of the mountain of research we want to do. And walking laps. 1 1/3 miles Friday, over 3 miles on Saturday. Sunday, he wanted to do a mile but we got interrupted after 3 laps and then again after another 4. Then made it – a full uninterrupted mile. Total 6 1/3 miles in 3 days. Sure is good to have him feeling so well! High time to have that at home! I went down to radiology records for a dvd of his test results. They didn’t fit on one, so they gave me two plus all the write ups. Since I didn’t bring the DVD player, viewing will have to wait, but I’ve been attempting to read the write ups in the meantime. Then one of the Doctors showed us the most recent CT head scan (when we asked) and it sure does look a lot better than the pre and post surgery scans.

Coming up in those next few days we have an appointment with Dr. Levitt to revisit the option of an artificial embolism in the brain bleeder. We were thinking that perhaps we should not have been so quick to celebrate not needing it. After seeing how well the hematoma has improved, (assuming we are understanding what we are looking at), and despite the headaches, we are not regretting the decision. But given the clots and the blood thinner, we are open to rethinking it.

Discharge planned for Sunday afternoon. Since the pressure that brought us in, the headaches had been very negligible, and the fatigue and shortness of breath gone. There was an appointment with Integrative medicine to talk about what is available among other disciplines – like acupuncture, meditation, etc.- on Monday that we wanted to keep. This appointment is only available out patient and we have been spending so little time out that it has not yet happened.

Well it turned out that it had been cancelled when he was readmitted so that reason for discharge was gone. And then – another headache. And a very minor rash. They both failed to become a cause for concern, but we were glad they occurred before we were home alone. A nurse who used to work in neurology and has much more familiarity with CT scans was asked to show us more and gave us a great tour through the scans. Her tour was very convincing regarding how well he is doing and explaining that recurring headaches should be expected for weeks but will probably end eventually. Nothing to worry about unless they become too strong or frequent – which, of course, is always the unknown qualifier. How strong, how frequent is too much? Still, it was very reassuring.

We did postpone discharge for a day due to the headache and rash but Monday morning, with no new developments, the paperwork has been put back into motion and we plan to leave this afternoon for a brief stay outside before Chemo round three on Friday.
We met a fellow patient doing laps. A young woman of 27 airlifted from the tri-cities due to a leukemia related emergency with her lungs. Her husband did almost all the talking as she spoke only Spanish. I don’t know how much she understood, and maybe she was only too shy to try English. There was something about her expression that made me ask if she was neutropenic. No. In that case, would it be okay to offer a hug? He said yes. I held out my arms and she sank tearfully into them. We were doing laps in opposite directions and every half lap as we passed we would hug again. That’s a big part of what’s wrong with this world – not enough hugging.

Virtual hugs to all of you.

Robn