Warren P. Clark June 28, 1950 — August 17, 2021

From Barbara

With the heaviest heart, I am posting to tell you that Warren’s battle with Multiple Myeloma ended on August 17, 2021.   From prior posts you know that Warren had been going through a lot over the last months and years.  On Sunday morning he was experiencing intense pain in his jaw and we went to the Brigham ER.  While we never learned the source of the jaw pain, a CT scan revealed that he had suffered a hemorrhagic stroke and his condition worsened until he passed away yesterday afternoon.  His brothers, Ken and Ron, came to see him before he passed away and Ken and I were with him when he died.  The doctors and nurses at the Brigham were compassionate and wonderful in every way. Thanks to all of you for your support and love during Warren's long struggle.

There will be no services. A celebration of his life will be announced.

Peace,

Barbara

Lots of stuff to report

The last couple of months have been difficult. Normally, I try to report things in a positive way. I am hoping that I will be able to do that next time. But after holding off for several weeks, I guess there is no way around this. But I did promise to keep people informed, so here goes.

Barbara points out that there is a LOT of information here. But let's remember that the reason for this blog is so that people can "read all about it" in one place. That way, when we get together face to face or by phone, email, blog or Zoom, we can talk about the fun stuff rather than the medical stuff.

First of all, my primary Chemo Drug, CC-220 has stopped working. No surprise there - we always knew that it would not work forever. We got 20+ cycles out of it - a good year and a half. Not bad. They have other things they can try. Not sure what those will be. They have been talking about lots of treatments, each with two names, none of which makes any sense to me. I think they will all require some additional pills - maybe shots and IV drips as well. 

Medical Issue #2 is some cardio stuff. I get out of breath very easily - like after a single flight of stars. They sent me to a cardiologist. He prescribed some pills for my atrial fibrillation. Taking them made me feel sad. I don't want to be sad all the time, so I stopped taking them. Instead, I started using the pill-in-a pocket approach. When I experience an episode of the atrial fibrillation, I take one of the pills and that makes the fibrillation go away within a few hours. Since this fibrillation happens only rarely - about once a week max, I think this is what I will do. Besides, I also have a feeling that it is a side effect of the CC-220. We will see what happens after I stop the CC-220. By the way, the "treatment" for Atrial Fibrillation is blood thinners to prevent strokes, I am already on blood thinners, so there seems to be nothing more that can be done. 

The other new thing is that I get out of breath very easily. I don't know what is going on there. I visited the cardiologist last week. He gave me an EKG. He had nothing to add as a result.

Medical Issue  #3 is intestinal blockages. This has happened 3 times, total. I know I have these since they come with a terrible stomach ache. Twice, I ended up in the ER and one time, they admitted me to the hospital for a couple of nights even though the blockage cleared in a few hours. I have learned that once they admit you to the hospital, they don't want to let you out - sort of like you are caught in a bear trap. After the hospital, I had to go onto a clear liquid only diet for a few days. Fortunately, gin and tonic are both clear liquids. Again, I blame CC-220 for these problems, even though the doctors tell me that CC-220 does not cause this. Fortunately no additional pills for this one.

I don't blame CC-220 for Medical Issue # 4. This started with the dermatologist operating on my ear to remove a Basal Carcinoma. No big deal, right. I was in and out on a Monday morning. Meanwhile, I made an appointment for that afternoon with my Primary Care doctor - whose office happens to be next door in the same medical building. Halfway through my appointment with my PCP, he announced, "You're bleeding. You are bleeding a lot." He loaded my up with paper towels and I headed to the dermatologist next door. By this time, there was blood dripping onto my shoulder and thence to the floor. Created a bit of a stir. They are not used to having bleeding "walk-ins". Not being squeamish, I thought it was pretty funny. The dermatologists  fixed me up and I was on my way. They even washed my shirt. At least we know that they have a backup business if the whole dermatology thing does not work out. (Skin Care Physicians and Laundry?)So, was it bad luck that this happened or good luck that it happened next door to the dermatologist?

If only that had been the end of it. The ear is still bright red, very swollen, and rather painful. I think it is infected but what do I know. Today, I noticed that the ear is not quite as red as it had been. Perhaps it is finally getting better. Perhaps the ear is getting ready to fall off. I put a call into them and they are prescribing more anti-biotics (yet again more pills)

The next issue is very strange. A week or so ago, I noticed a numb spot on the right side of my chin. It did not bother me much, since it was just a numb spot. Since then it has gotten larger and it has also gotten rather painful - it sometimes burns fiercely. My PCP now attributes this to a bout of shingles. If that's what it is OK. I can deal with a little bit of discomfort. And Yup - you guessed it. More pills. 

Every time you go to a doctor, they prescribe more pills. On Wednesday, I counted 26 pills, though this is more than most days. 21 is more typical. 

But other than that stuff, I am in pretty good shape. Oh - yeah. I still have the leg cramps and the numb feet and the diarrhea, but I am used to that stuff and it does not bother me much. 

At least my liver seems to be OK. That is something, right? And I think my spleen is OK as well. At least a few of my internal organs seem to still be working OK. 

I have found time for some of my normal workshop activities. I am repairing a trailer. I bought this thing many years ago. I decided it needed repair when I was walking in the bed of the trailer and next thing I knew, I was walking on the pavement under it. Barbara suggested a coat of paint and a pack of matches. 

I stripped the wood from the bottom and sides and removed the old bolts that remained. They were rusted on and I had to use a cutting wheel. This took hours. I bought wood for the base and sides. That is when I learned that the price of building materials had doubled. But no worries. I figure that when I finish, I will have a nice trailer for not much more than it would have cost me for a much nicer brand new one. At least it kept me out of trouble. 

So that's the way it is. Hopefully, there will be more good stuff in the next report.

Coming out of hibernation

Barbara tells me it is time for a blog update. She's right. Supposedly, "No News is Good News", but if you wait too long between updates, people begin to wonder. 

I can assure you that we are both still here and doing well. We were both inoculated at Fox Hill Village early in the process - one of the benefits of living in an "Old Folks Home"(Barbara hates it when I call it that.)

I am still on the same clinical trial (CC-220). I have to go to Dana Farber every 14 days. Numbers still look very very good. Mostly same old side effects which I won't go into again. Sometimes I have trouble sleeping because of them, but that gives me an excuse to take a nap the next day. My biggest issue these days is that I get out of breath easily.  They have me seeing a cardiologist but he has no idea what is going on. At least he gave me more pills to take which I always appreciate but it is hard to see how a few more can make much difference. I have also been ordering various monitoring devices and this gives me a chance to play with electronic gadgets which I always enjoy.

I spent the winter working on bowls, some computer stuff and getting better at 3D printing. I also got a new Virtual Reality (VR) helmet. I designed and printed some stands for the Christmas ornaments I made a few years ago.

I also made a couple of cute  covered "Acorn" bowls.

Another project has been working on a thousand or so 3D slides that I took mostly in the 80s that I want to be able to view on my VR headset. They need to be digitized. I bought a slide scanner, but of course, this has no adapter for the special 3D format of my slides. So I designed and printed one using the 3D printer. I then wrote software to convert them to the format used by the headset. This effort combined several of my favorite activities: 

• 3D Photography
• Designing and printing 3D images
• Computer Programming
• Virtual Reality Headset

I'll bet you are all thinking about just how much fun that must be. 

We also got a few more of those Amazon Echo things including voice controlled light switches. Now I get frustrated when I'm in a room that does not have the voice activated lights. It is SO 20th century to have to walk all the way over to a switch. 

Barbara is still spending a lot of time in her role as Chair of the Board at Fox Hill Village. She does that well, but she is making little progress trying to remember how to cook or follow recipes so I still have that chore. For some reason, I seem more worried about this than she is. In spite of this mental disability, it is amazing how fast she learns the new Mah Jongg card each year. . 

We are gradually coming out of hibernation. Since we have been been inoculated, we have hosted trusted inoculated friends for dinner indoors without masks. Twice! Woo Hoo! Very Exciting. When we are at Fox Hill Village where EVERY resident has been jabbed, we are allowed to eat in the dining room, with a max of 6 people at a table. We still have to wear masks in the halls, but we don't have to wear masks while eating and drinking which makes those activities much easier. 

Early April was spectacular. I decided to get the boat into the water. On Friday, I took the boat to visit a friend on Bear Island. After I got back to our house, it was nice enough for our first Gin & Tonic of the season on the open porch. Very civilized. 

Spring is so welcome this year.

Happy Thanksgiving

Happy Thanksgiving everyone. Time to stop whining about Corona and start thinking of all we have to be thankful for. 

The first thing that I am thankful for is that I am here to celebrate. This is not something that I expected 7 years ago when I first got Multiple Myeloma.  

Barbara and I are also both thankful for our latest clinical trial of a drug called Iberdomide.- aka CC-220. I have been talking this for about a year and my numbers keep going down. We track mostly something called "M-Spike" and the latest report shows no measurable spike. Hurray.

I am thankful that I have to visit Dana-Farber only every two weeks. (in the past it has been weekly or more). I'm on a 28 day cycle. The "Day 1" visit makes a lot of sense - see the doctor and get lots of tests and meds. The intermediate "mini-visit" confuses me. I drive down to Fox Hill Village and stay over night. The next morning, I drive to Dana Farber where I have two appointments. During the first, Lab Services draws a vial of blood. I then have another appointment 45 minutes at Infusion where one of my nursing pals draw another vial. That's all. Nobody can explain why this can't be done in one stop. They also can't explain why I can't get the blood drawn locally. I would be happy to pay myself for a courier to drive the sample to DF. Oh - wait. They did explain why we can't do this. "Because that's the rule." OK - that certainly clarifies things. So, I am thankful that I get to complain about this to anyone who will listen and laugh at how stupid it is.

This brings us to the next thing we have to be thankful for. Covid-19. Not that I am glad that we have this going on. But as with anything, one can find positives.

One is that for three months in the Spring, the drug company did agree to let me get the mini-visit blood draw in Laconia (next town). Apparently, they managed to do without one of the vials. That meant that I could go 28 days without having to take the drive to FHV.  

We are also thankful for Zoom which allows us to reach out to some people we had not seen in a while. We would not have done this without Covid. 

I am thankful that Barbara can attend to her "President of the Board" duties at FHV via Zoom. It is much less stressful for both of us than having her go to FHV every week or two. 

Barbara is thankful for my cooking and I am thankful for her dish-washing. She claims that she is still trying to remember how to cook, but apparently, the memories are not coming back - no matter how hard she tries. 

I am thankful that my mother forced me to learn to cook. She did not teach me hot to use a "hot-air popcorn maker. Since I am always trying to find better ways to do things, I had the popper leaning back so that unpopped kernels would not blow out the front before it started popping. I made the mistake of taking a "quick" bathroom break. While I was away, the popping began, but the popped corn did not go out the front because it was still tilted backwards. Eventually, they lifted the top an inch or so from the popper and popcorn started to fall out all around the sides - even after we straightened it. I then made the mistake of removing the top. Did you know that without the top the fan has the ability to blow popped corn as well as unpopped kernels several feet into the air and scatter it around the kitchen, It looked like one of those "Quaker Puffed Rice" commercials with the rice being blown from a cannon.

I wanted to repeat this experiment so that I could film it for YouTube. I was going to play The William Tell Overture in the background.  Unfortunately, certain people in the household did not think this would be a good idea. You, however are welcome to try this at home. Let us know how this works out for you. I would be thankful for a video of your trial. 

So, now we are prepping for our Thanksgiving feast. It will be just Barbara and me. Being a traditionalist, I bought a full sized turkey - 14 pounds. That should be enough for the two of us. We plan to get at least two meals from it. I will be doing almost all the cooking, though I might let Barbara mash a potato. 

So everyone, be thankful and enjoy the day. 

Still Hunkered Down

My apologies. It has been forever since I last updated the blog. Rest assured that we are both still fine and happy in New Hampshire. We have been here since March with few departures from the property. Being in New Hampshire is not a big difficulty for Barbara in her role as President of the Board at Fox Hill. Most of the meetings are virtual and Barbara has become quite the Zoom expert.  I am still spending my time on the computer and up in the shop and have picked up a couple additional interests. 

My numbers continue to be very good. The indicators are about half of what they were in previous regimen at its best. I also feel like my energy level lasts for more hours during the day than it used to, so that is good. 

I am currently taking a drug called CC-220. I am just starting my 10th cycle of 28 days each. I have to go to Dana Farber on Day 1 of each cycle which was today (Aug 12) and they also want me on Day 15 for blood tests. For April, May and June, they let me get the blood test at a local hospital due to Covid-19 danger. You simply can't imagine how nice it was to go almost a month between Dana Farber visits. 

Side effects continue to be manageable. I get cramps in my lower legs that affect sleeping. Drinking lots of fluids during the day helps. The doctors tell me that Tonic Water is best for cramps. I have never found Tonic Water to be better than just plain water, but I try to follow doctor's advice anyway. Sometimes I dilute it with a little gin. 

I have continued to make bowls and other things in the shop. Here are a couple I completed since my last posting:

On thing I did not want to do during the virus thing was go to a barber. I finally relented and let Barbara take a cut at my hair. I had ordered clippers back in March and it has taken me this long to work up enough courage to let her tackle the job. Mostly it was the heat that made me want my hair shorter. She did a good job, though she left it a bit thin on the top. It was much quicker than waiting in line at the Barber shop. Also cheaper. She charges only $3.00. I give her a 50 cent tip. I don't think I will ever go to a real barber again. 

I am sorry to say that Barbara's memory has not improved at all since we moved to NH. She still does not remember how to cook so I still do all the cooking. She tells me she is struggling to regain this knowledge bit so far to no avail.  

Being in lockdown has not stopped us from shopping - much to the benefit of Amazon. According to them, I have made 50 orders in the last three months. Here is a photo of Barbara coming back from the mailbox on a heavy "Amazon Day'.

We also socialize a bit. We often do "Zoom Cocktails" with someone every week or two. Covid-19 is a great excuse to get together with folks we have not seen in a long time. We also do "Docktails" with folks around the lake. We take our boat to their dock. We stay on the boat and they stay on the dock. BYOB. We also invited the next door neighbors over recently. Our split dock was great for social distancing:

I mentioned that I have picked up a couple of additional interests. I sent my 9th grade nephew an "Intro to Electronics" kit. I then sent him a kit to teach him about the robotics chip. So, of course, I had to get one for myself so that I could judge its suitability. Learning about that has been a lot of fun. 

And if that's not enough, I now have a 3D printer.  Well, it's not actually mine. A friend from FHV whose family has banished him to Ireland for the virus duration has lent it to me. He wants me to figure out how to use it so that I can teach him when he returns. Turns out that there is a lot to this. 

I made a couple of wrenches for one of my woodworking tools. These are tools that cannot be purchased. Here are a couple of photos:

You may recall my fancy "Powered Air Respirator". Unfortunately, it filtered the air coming in, but not my breath going out. I used the 3D printer to make fittings to go over the outlet valves and then I sewed filters to go over the fittings. Now, difficult though it may be to believe, I look even more ridiculous than I did before. Barbara says it makes me look like a vacuum cleaner. Please also note the spiffy haircut.

And speaking of "Old", I passed the big "70" in June. To celebrate, we hosted a "70th Birthday Zoom Meeting". It was great fun to see so many friends and frustrating not to be able to talk individually to everyone who dropped by. Being 70 made me think of how much life is behind me and how much life is ahead. Kinda scary. I should not complain though. There was a time that I did not expect to see this birthday, so I am happy I made it.

So, that's it for the last several months. Stay happy and healthy and let us know how you are doing. 

Hunkered Down in New Hampshire

Barbara and I are still hunkered down at the end of our dirt road in New Hampshire. Everything is pretty much the same as it was a month ago when I published our last update.

One difference is that I am far enough into my current new clinical trial that I now have to check in every two weeks instead of every week and last cycle, I talked them into letting me get the blood test done up here in the lakes region instead of going to Boston. This is all good since I figure the two most dangerous places I visit are Dana Farber and the Supermarket.

I am doing the shopping. I have a very tight fitting N-95 respirator which I am confident provides much better protection than the blue surgical masks everyone is wearing. It is also much easier to breathe through. Barbara's face is smaller and we don't have a respirator that fits her tightly. We figure that even though my immune system is more compromised, the protection afforded by the well-fitting mask more than makes up for it.

I last went shopping two weeks ago. Our market has one hour early every day that is reserved for older people. During this hour, every older person in the county shops there. Older people make up most of the people in the county, so this hour is an absolute mad-house. So far there are 28 known cases in our county out of a population of 61,000. People are all wearing masks and maintaining social distancing. That could be why there are so few cases.

I wanted to get all our shopping done in one shot. I spent more than twice as much as I have before spent at one time and I did not buy toilet paper. There wasn't any. When I got home, I backed the car into the garage and wiped everything down as we unloaded it. Then, when I went into the house, I stripped off my clothes, put them in the washing machine and then headed for the shower.

Did you see that guy in the video showing how to sanitize market purchases? He spent 20 seconds washing each orange. I had bought grapes. I decided not to wash them individually. Since we were not in a particular hurry to consume most of what I had bought, we left non-perishables in the garage for a week before moving them into the house.

I had my appointment at Dana Farber today. Everyone entering the building gets channeled to a check-point where they ask a bunch of screening questions. Then they send you to a check-in desk where they ask the same questions again. I then went to the second floor for "Labs" where they asked the questions again. And then up to the 7'th floor where they ask (drum roll) the same questions a fourth time.

I wore my fancy N-95 respirator again. Can you believe that the second checker handed me one of those blue paper things and asked me to wear that instead. I said something to the effect of : "Are you kidding? That little paper thing is not going to protect me? What I am wearing is a tight fitting N-95 respirator that is much better than that surgical mask." They relented after some discussion.

I also wore a set of coveralls that Barbara had ordered for me. Recall that after my last visit, I hid behind the car in the parking garage, stripped to my skivvies and changed clothes. Barbara thinks that is funny. She got coveralls for herself as well. Hers are hot pink. Quite fetching.

Elevator protocol is also interesting. I was by myself in a large elevator this morning. When it stopped at an intermediate floor and the doors opened, a woman was standing there. I could tell she was wondering what to do. Without saying a word, I walked to the back of the elevator and she came in and kept to the front. We were both wearing masks. Strange times.

My nurse told me that she has not heard of anyone at DF getting Covid-19.

Barbara is still spending a lot of time on Fox Hill Village finance stuff. She has also discovered an on-line Mah Jongg site. Fortunately, the site limits her to 8 free games per day. Because she finds it addictive, she is pleased with the limit. Her birthday is coming up and I have threatened that if she is not nice to me, I will buy her an unlimited subscription for the next year. 

Covid-19 update

Seems like everyone is posting a Covid-19 update. I thought I would do one as well.

As you may recall, Multiple Myeloma tends to wipe out the immune system. My immune system is certainly is not working up to par. One might think that I would be somewhat freaked out about this Covid-19 thing. One would be pretty much right. On the other hand, my approach to things I can do nothing about tends to be pretty laid-back. I do what I can and then approach the situation fatalistically.

Fortunately, there are some things that Barbara and I can do about this.

• Yesterday, we moved to the New Hampshire house and plan to stay here. We have lots of food and will seldom have to leave the property.  When we do leave, we hand wash upon return. I also wash my face in case there are any nasty guys there that I might later rub into my nose or eyes. 
• If I must go out to the supermarket, I will go when it is mostly empty.
• I carry sanitizing wipes in the car. I take one to the market and use it to touch things. 
• I use self-checkout to avoid the cashier. 
• I wash my hands upon leaving the market (in their rest room) and then use another sanitizing wipe upon my return to the car. 
• Unfortunately, I have my weekly trips to Dana Farber. I think that starting after next Wednesday. the protocol will have me visiting every two weeks. Fortunately, traffic is light these days and I am thinking of day trips.
• I have a Rockler Powered Air respirator that fits snugly on my face. This is one that protects the wearers not those around them. I plan to wear this while st DF. 
• Whether or not I visit FHV during these visits will depend upon timing and disease proliferation in MA.
• Fox Hill Village is taking steps to protect residents. This is one of the reasons we have waited this long to move. Remember that average age at FHV is 88. Lots of very at-risk people. Note that FHV instituted these steps well before any of them were mandated. 
• All group activities are cancelled.
• Movies are still shown in the auditorium, but most chairs have been removed and those remaining are 6+ feet apart. 
• Dining room is closed. Bagged meals are delivered to apartments.
• Guests are strongly discouraged.
• Leaving the apartment is discouraged except to go out for walks.
• People returning from trips that involve airplanes are asked to self-isolate for two weeks.

I am not much bothered by being stuck at the house; I was already spending most of my time either in the shop or in front of the computer. Not much change for me, though I have promised to go on more walks with Barbara. Also, we will hopefully use the boat more this year, though we will wait for the ice to melt off the lake before we start this. 

Barbara spends a lot of time on the phone with the other Members for the FHV board of directors. The board is conducting most meetings via phone conference these days, so being in NH is not a huge problem for her.

So that is the situation. On the plus side, people in this area tend to be taking the virus very seriously. I have heard that that is not the case elsewhere - such as Florida where our friends tell us that people are still congregating at restaurants, etc. Or maybe it is just the oldsters we congregate with here who are being careful.

My thoughts on this tend to change almost daily as more info becomes available and I have cogitated more on it. I also think the USA will make progress on dealing with this faster than we are anticipating. Progress will come with better knowledge of how the disease usually spreads, methods to slow disease spread, treat the symptoms when the disease occurs and better testing methods.

I also read somewhere that it is often not the virus itself that kills, but rather than the immune system's response to it. So maybe not having an immune system can sometimes be an advantage.

I will let everyone know if our situation changes.