Wednesday, November 25, 2020

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. 

Wednesday, August 12, 2020

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. 

Wednesday, April 22, 2020

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. 

Saturday, March 21, 2020

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.

Saturday, March 7, 2020

CC-220 : Even Better Numbers

Good news. My latest Clinical Trial seems to be working well - even better this cycle than after last cycle. My M-Spike number is down close to what it was a year ago. I am also feeling pretty good and I have more energy. Side effects remain very tolerable. I am now a week into Cycle 4. Let's hope things keep improving.

We are still at Fox Hill Village and I continue to spend lots of time in the shop. For the last several weeks, I have had an urge to make wooden eggs. I have no idea why. I have been making them out of different kinds of wood to get eggs of different colors. When I want to get fancy, I laminate several pieces of wood together. Then when I cut the egg, it leaves an interesting pattern in the egg. Here is a photo of some of my eggs:

My goal eventually is to make an egg and after 30 days, have it hatch and a little wooden chicken comes out and walks around. FabergĂ© had better look out.

On the negative side, it turns out that I need another "nose job". You may recall that a year or so ago, I had Mohs Surgery on my nose (Mohs Nose) to remove a Basal Skin Carcinoma. Well, it's back and I have to have the surgery redone. Plan is for this to happen next week. So it seems that they will be hacking yet another small bit from my nose. Good thing the nose was rather large to begin with. Unfortunately, the last procedure left the nose a bit bumpy. I am trying to convince myself that the nose bumps give my nose character.

The other thing on my mind is Covid-19. Most people who get the disease can expect to recover - UNLESS they are over 65 (hey - that's me) or have a compromised immune system (Whoa - me again). Not to mention that we are mostly at Fox Hill Village for the winter. And just exactly how is Fox Hill Village different from a cruise ship. Lots of people packed together and eating in the same dining room. Oh - I know. More people coming and going.

So far, we are taking a wait and see attitude, but we are concerned. If and when  the virus takes off in the Boston area, my idea is to head to the New Hampshire house and lock the doors, leaving the property only for supplies and trips to Dana Farber.

So, on that happy note, I will close this update. Thanks for reading. Wash your hands.

Friday, February 7, 2020

CC-220 still working

After completion of Cycle 1 on Dec 24, the doctors measured my M-Spike and it had dropped a good bit - from 3.02 to 1.61. Definitely good news. I reported that. However, they delayed the start of Cycle 2 for a a week  due to my having a bad cold. So they took another M-Spike reading a week later (Dec 31) and the M-Spike jumped to 2.11. That is large jump for a week. Very disappointing. I was concerned that the had stopped working after only one Cycle.

I was very anxious to see the results after completion of Cycle 2. I got those results on Wednesday (Feb 5) and they were good. The M-Spike had dropped to 1.27. This still a lot higher than we were seeing a year ago on the treatment I was on at that time, but we are still early in the CC-220 trial and we are hoping that the numbers continue to improve.

Meanwhile I am feeling pretty good. I have had much better energy over the last couple of weeks and that is important to me. In December, I was quite active in the morning, but generally just wanted to sit around in the afternoons. Lately, I have been active all morning AND all afternoon. That is great news.

The biggest problem has been leg cramps keeping my up at night. I have to get up every couple hours and walk the cramps out of my legs. I also sometimes get them during the day. The doctors tell me to drink lots of fluids and to take Magnesium and Calcium. I also had a theory that drinking was making the cramps worse, so I gave up drinking for a week. Yes - I know - drastic.  Fortunately, this did not seem to help. So I am trying a few other things and living with it. If I have to get up a lot at night, I can sleep later in the morning. It is not as if I have to deal with one of those pesky jobs to get up for.

I still have all the other side effects or whatever they are, but I am dealing with them.

Since I have had better energy, I managed to finish off the 7 Christmas ornaments I had been working on since early December. I am very proud that I got them done 11 months before Christmas this year.

Some of the delay could have been due to an airplane model. Just before Christmas, I saw a B-17 model for sale on E-Bay. This one has a visible interior and since I have always been fascinated by this particular aircraft, I ordered it for myself. 

This brought me back to my childhood. I recalled the thrill of looking at the photos on the box and thinking about how beautiful my model was going to be completed. I recalled the disappointment a few days later when I realized the mess I was making of the thing. I realized the folly of my assumption that I would be better at this than I had been as a 10 year old. I was certainly no better a painting lips onto a 1" tall figure than I had been. I ended up with a big glob or red covering the guys face. I also thought about what kids these days are missing by not building models- such as how to deal with disappointment - or how to recover from problems. For example, 50 years ago, the kid would heat a wire and put a "bullet hole" into the side of the plane and declare that the guy with the red paint all over him had been "wounded". I too got the chance to get creative. They did not include enough figurines to fill out the crew. There was a sitting ground crewman, so I decided to promote him to tail gunner. He fit almost perfectly - once I cut off his feet and left elbow.  What I loved about the model was that the side of the plane was made of clear plastic. Unfortunately, touching glue to any part of the "clear" plastic caused it to turn to "frosted glass". My airplane looks like the guys are trying to fly it from inside a steamed up shower. 

In spite of all these failures, I am including a photo of the finished airplane. For reasons stated above, there is no close up. I took several photos and I am including the one that looks the least bad.

Meanwhile, Barbara continues to be a real trooper. My getting up several times a night can't be helping her sleeping and she has been putting up with my taking 40 Mg of Decadron once a week - which makes me hyper - more hyper even than "normal" Warren. She is also spending huge amounts of time as treasurer of Fox Hill Village just as we are borrowing millions for a major expansion.  

So I am hoping that things health wise will be stable for a while. I will post another update next time there is something to report. 

Wednesday, January 1, 2020

CC-220 is working

Happy New Year everyone. Ours is off to a good start.

The first round of CC-220 seems to have worked very well. It cut my "M-Spike" in half. That is great news. Horray! The bad news is that the drug has now been given a new name that I can't remember, but I think it has 30 or 40 letters.

This means that we will continue with the clinical trial. It is a relief to have a good idea of what our schedule will be. The cycles are typically every four weeks with different things happening in different cycles. No matter. I can count of visiting Dana Farber every Wednesday for blood tests and pill taking. Pills are better than shots or infusions, but I guess that once they stick me with the needle for the blood draw, they might as well pump some other stuff into me so maybe it does not make that much difference once I am there.

I say that the cycles "typically" start every four weeks, but they skipped a week before starting Cycle 2. I had a bad cold last week. I was thrilled.  My brother, his wife and his daughter (Ken, Yoko and Izzi) joined us in NH for Christmas. Skipping a week meant that I did not have to take my dreaded "Dex" which prevents my sleeping. It also makes me even talkative than "normal" which as you all know is pretty talkative.

We all had a great Christmas. I cut a scraggly white pine tree from my woods (scraggly being a Clark Christmas Tradition). Izzi did a great job with the decorations. We cooked a turkey dinner and did a gift exchange, I say "exchange" but my favorite gift was one I bought myself.

(I have still not gotten over the year I figured that Santa no longer delivered gifts to me. It could be due to that whole "naughty and nice" thing. )

I got myself a drone that has enough automatic features so that I can actually fly it. It was reasonably priced, but works best only indoors where there is no wind. I find that it works well for terrorizing fellow residents of Fox Hill Village. This photo was taken by the drone at our home in NH. Izzi is driving.

So, we are looking forward to the new year. The chemo seems to be working and side effects aren't too bad, though there are some. Worst is lack of wind. Just to be clear, by that I mean getting out of breath I get tired on stairs. I also have an itchy thing going on plus some neck pain. Not too bad. I can still operate the lathe and work at the computer. I am happy with that.Also, you can see from the photo that I am still shrinking. This makes it easier to sleep on a couch.

Oh - and if anyone has not had a chance to view our holiday newsletter, feel free to check it out (or not) at:

So, Happy New Year everyone. Our wishes are for good health and happiness for everyone.