Meeting the actual Oncologist

Yesterday, we met with my actual oncologist. Usually, we meet with Mary, a nurse practitioner, but it had been well over a year since meeting with Dr. Richardson  and we decided it would be good to see the great man himself.

Dr. Richardson is always totally positive and very effusive about how wonderfully I am doing. I think he views patient attitude and optimism as very important and part of the treatment. I therefore try to put what he says into perspective. This was the case yesterday as well, but I can't say that my bullshit filter went off during our visit.

Anyway, he said that I am doing great and that he thrilled at the way things are going. He said that the current treatment had put my disease into "remission". Actually, this is not true (see paragraph above). Remission would mean that I can take a break from treatment, which I cannot. My disease is "responding" very well to treatment. I think that what he was telling me is that as long as this treatment works and I can stay on it, the disease is not damaging my body.

The primary question I had for him was whether my bones were continuing to deteriorate. (I call it "bone rot".) Please understand that every time I feel and ache or pain, my first thought is that the bones at that location are rotting. He said that this is not the case. The radiologist who read the Skeletal Survey a couple of months ago said there was "minimal" progression of bone deterioration. I asked Dr. Richardson what that meant. He said that it did not mean anything; that my bones are stable.

Nor are they healing, either, in spite of the fact that I take Zometa every 3 weeks. But they are stable which is good news. Here are the answers to some specific question that I asked him:

* I do not have to worry particularly about breaking bones by stressing them with my muscles.

* It is OK for me to lift heavy things without worrying about breaking bones.

* I must continue to avoid any activity that bounces my spine such as horseback riding or skiing.

Since Barbara and I have been mostly grounded for the last nearly 4 years, we are beginning to get a bit of "Wander Lust". I asked about the possibility of scheduling a trip somewhere if that were to delay a chemo cycle. He said that I could probably delay one for a week, but that two would be pushing things and three would be definitely not recommended.

We talked about trying some of the emerging treatments that are coming along. His recommendation was for me to "stay the course" since it seemed to be working well and not to risk messing things up. Also, these emerging treatments get better every year, so better to wait as the treatments get better than to rush into things.

So, life continues. My side effects seem to be pretty stable. Cramps at night, using lots of Imodium, peripheral neuropathy in my feet and now lower legs. I mentioned to him that I have been feeling pain in the end of my toes which I though might have to do with the neuropathy. He said, "This doesn't bother me." I replied, "Of course it doesn't bother you. You're not the one with the sore toes. . ." and we laughed.

My biggest complaint these days is that I can be very tired on quite a few days and it seems that all I want to do is sleep. But hey! There are other days that I am full of energy, so I am glad for that.

We are mostly in New Hampshire in the summer. I have to be at Dana Farber on two Wednesdays out of three. Barbara has often has important Fox Hill Village meetings on Tuesdays. Usually we drive down together, but last week, Barbara went down on her own. You know that she has this fancy car with the "Auto Pilot" which drives the car by itself on the highway. Barbara does not use this feature, but last week she called me from the Outlets in Merrimack and explained that the car had driven off the highway and all the way to the outlets totally on its own. There was no alternative but for her to do a bit of shopping. What could I say?

Happy 50th !

This week, I completed "Cycle 50" on my current chemo regime. That is 21 days per cycle with visits to Dana Farber on Days 1 & 8, chemo pills on  days 1 - 15 and then six break days. Apparently, I am the person who has lasted the longest on this regimen by a large margin. Lets hope I can keep it going.

There is nothing particularly new to report, but it has been a while since the last update and I have had a couple of people ask. And I can report that not much has changed - which is good. The worst side effect is that I still get pretty bad leg cramps - especially at night. And sometimes during the day, I get hand cramps and rib cramps. (Who ever heard of "rib cramps"?)

There is another side effect which delicacy prevents me from discussing, but I will say that I now carry Imodium with me.

Still, people that I run into tell me that I "look good". I can't help but notice that nobody ever tells me that I am "good looking".

All these side effects are quite tolerable. The thing that bothers me more than anything is that I now have some very minor pains in my back. I worry because these are rather new and that they could be signs of what I call "bone rot". Perhaps the doctors have some Latin name for this.

Since my last posting, I did complete my "Skeletal Survey". The report from the radiologist said that there is "minimal additional bone damage", whatever that means.  ("Bone Rot"?) The report also mentioned that there are "holes in my skull" which should not be a surprise to anyone. I do check my pillow every morning to be sure that nothing is leaking out.

Barbara and I did have a grand adventure in May. We went to Philadelphia to attend niece Carolyn's graduation from U Penn. We were very proud to share that special day with her. She has decided to tour around the world until October when she will start her life in the "real world". Life is tough, but I am all in favor of people having as many adventures as they can when they are young and healthy. Also, more time to savor the memories and (more importantly) to tell stories about the adventures.

We (and the cats) are now ensconced happily in New Hampshire waiting for Summer to start. In fact, with the weather we have been having lately, we will be happy for Spring to start. I am determined to get the boat into the water by July 4. Of course, I was determined to get it into the water by Memorial Day . . . 

Happy Spring !

I write this report looking out over the beautiful waters of Lake Winnipeasukee. The ice disappeared a a couple of days ago. The sun is shining and yesterday, it was 75 degrees. A few days ago, there were eight beautiful deer in our front yard. Eating our plantings, the evil creatures.

Barbara is still at Fox Hill Village. She claims it is not because she prefers to be cooped up in our small apartment with her cats. (I hope she doesn't read this!)  She says that there is still more to see and do there than here. Especially for people who play Mah Jongg.

After four months, she is still recovering from her broken knee. She does physical therapy and the knee gets a little better every day. It hurts if she walks long distances, but she finally got her handicapped parking tag. With the various bureaucratic screw-ups, this took only 2 1/2 months, but she has it now and it is very handy. Sometimes I am tempted to go shopping with her just for the convenience of parking in a handicapped place.

I know you are all wondering if I did any "sugaring" this year. I did not. I was up for 10 days in February and we got a couple feet of snow. Unfortunately, I was unable to get the PassePartout working reliably and without it, it would have been difficult to bring back the sap through all the snow. Also, the weather forecast was for really warm weather for the next week and I figured that would stop the sap flow. So I decided not to bother tapping the trees. Of course, it turned out that March was a great sugaring month. Maybe next year.

Since February, I have spent most of my time working on two aspects of bowl making. I did one bowl with a complex feature ring:

People tell me they like it, but I was disappointed in the overall shape of the bowl. I decided I needed a better way to visualize the bowl before I built it, so I have been working on a program to visualize the bowls. That has taken a lot of time. It is not yet complete, but I can already look at a proposed bowl from any perspective:

Oh -yeah - and my health. Well, the numbers continue to look good. I do have a little bit of back pain, but so far, it is not bothering me very much and I am hoping that it is something that will pass. They did my annual "Skeletal Survey" last week. This is where I get to put on one of those cute little "johnny" things and they x-ray every part of my body. We are waiting to hear what they have to say about that. I will let you know in the next report.

Another Winter Wonderland in New Hampshire

Happy Winter, everyone. I am currently in New Hampshire on "Break Week" and my brother, Ken, is visiting. Barbara is at Fox Hill Village (FHV) in Massachusetts. She thinks that FHV is "Going South" for the Winter. Other than slipping on the ice.

Barbara's broken patella is healing nicely. This is because she is religious about doing her assigned exercises - a half hour three times a day followed by icing. She went from using two crutches to one and then stopped using that one when she realized that she was mostly just carrying it in her hand and using it only as a potential husband correction device. She now goes to a nearby fitness center for physical therapy which she does not mind because it is right next to a Designer Shoe Warehouse. The one area where her progress has been very limited has been in her ability to scoop cat litter. She is somehow managing during my trip to NH, but I will have to take that over again when I get back. She says it could be months before she can do that on a continuing basis. Possibly years.

New Hampshire has been getting absolutely hammered by snow.  We had about two feet in the ground yesterday and I think we got another 6 - 8 inches last night. We have a plow guy who comes after every storm, he does not do a great job, so I have to go out on the tractor and clean up a bit. I'll bet you can imagine how much I hate having to use the tractor.

Meanwhile, I have a new computer thing going on. I have always been fascinated by 3-D photography and viewing. In the 70s, I even had an old camera that took "3D" photos and I now have hundreds of really cool 3D photos that I almost never look at. The next step beyond this is Virtual Reality (aka "VR"). This is like 3D on Steroids.

It might sound silly, but 3 1/2 years ago when I first learned of my illness, one thought that really upset me was that  VR for consumers was just around the corner and that I was going to miss it. That actually made me pretty angry. Well - a couple of months ago, I realized that I had made it past that corner and that VR would be an ideal platform for flight simulators - especially helicopter flight simulators. So, I took out the old Visa card and purchased an Oculus Rift VR system along with a screamer computer to run it. More details would be really boring at this point, but suffice it to say that I am having a blast with it. The best thing is that Ken is actually more into 3D and VR than I am and he too is purchasing a VR system. He has this crazy idea that he and I will both run War Thunder and he will blast me out of the sky. We'll see about that!

Barbara's Broken Patella

Happy New Year everyone.

My health continues to hold steady which is good. Hardly seems worth an update, but some people like to get the news, even if there is no news. At least not on me. But Barbara got back to the apartment yesterday after two weeks in the hospital and rehab. More on this below.

We managed to make it through the Christmas hassle without difficulty. Normally,we do not exchange Christmas gifts, but this year, Barbara purchased a couple of small gifts for "the family". The first was a tiny electric egg poacher. You put the raw egg into a small holder and then place this plus some water into the poacher. You plug it in and several minutes later, it beeps. Open it up and voila! You have uncooked eggs. If you repeat this several times, you end up with cooked eggs that are sort of rubbery and tasteless.

The other machine is a pancake cooker that works much better than the egg cooker. Mix the batter, put a precisely measured amount into the machine and five minutes later, you have one perfectly cooked pancake. About 3 inches in diameter. Very tasty. Repeat this with more batter and 5ive minutes later, you have a second pancake. Keep this up long enough and you will have enough pancakes for breakfast. Sometimes by the next day. Alternatively, the two of you can take turns eating the pancakes as they come out of the cooker. Unfortunately, at the rate this thing produces pancakes, it is difficult to actually gain on your hunger level.

So, now, we'll talk about Barbara's little mishap.

For years, Barbara has been saying that she does not want to spend winter in New Hampshire. "Too much snow and at our age, you have to worry about slipping on the ice." So, on the day after Christmas, Barbara slipped on the ice and broke her knee cap. Not in New Hampshire, but in Massachusetts.

Anyway, ambulance, surgery, 4 nights in the hospital and 10 days in re-hab. One of the nice things about living at Fox Hill Village is that there is a re-hab facility attached to our building (named "Clark House" coincidentally enough). This of course made it easy for me to visit several times a day. Which I did not mind once I learned that there were "free" guest lunches. Also they put out coffee and pastries in the morning, cookies in the afternoon. Of course, my main reason for visiting was because I missed Barbara. But I could not bear to see the pastries or cookies go to waste. No worries about weight gain on my part. "Clark House" is at the absolute opposite corner of the building from our apartment. I think it was about a two mile walk.

While Barbara was not very happy about being crippled up, she was not in a huge hurry to leave Clark House. She was getting a couple hours a day of excellent physical and occupational therapy. Also, there was a red button she could push and people would come to assist her with things that she needed. The biggest problem was that she missed the cats. She quickly found a solution to that.

She explained to me that the doctor had ordered that she have a "Cat Scan" every day and it was up to me to bring the cat. So, I would load a cat into a cat carrier, put the cat carrier onto a hotel cart and bring the cat to her room. The cats were less than enthusiastic about the cat carrier but I managed to do this every day without ever requiring actual stitches.

As of Monday, Barbara is back in the apartment. She now has the cats, but no "red button". I am thinking of getting her one of those "Easy" buttons from Staples. I wonder if anyone will come when she pushes it. One of the neighbors suggested that I get her a bell, but I explained that the bell would make noise and bother me. Even if I were to show up, it is unlikely that I would be as obedient as the red-button people from the rehab center.

The good news is that the doctor says she should be able to get back to "nearly" normal. The bad news is that it will take 3 - 4 months of hard work. In the meantime, I will be scooping the cat litter. 

Our House did not Burn Down

Our house did not burn down last week. I mention this because there was a certain amount of doubt for a while. In fact, the fire department sent trucks to our house three times. Here is the story.

Last Thursday, we were in Westwood at around noon I got a call from the alarm company telling me that they had dispatched the fire department to our house. I called the Meredith Police, gave them codes to get into the house. We waited for 15 minutes for them to call back wondering if the reason they had not called was because they were too busy trying to save the foundation. When they did call back, they reported that the alarm had stopped and an interior inspection showed no indication of smoke or fire.

Fifteen minutes later, the alarm company called again. So did the Fire Chief who had returned to our house. They did another walk-through and left we called the alarm company and told them to put our account on "disregard" until further notice. Apparently, to the alarm company, that meant "4 hours" because:

At 5:50, they called again. Apparently, the "Disregard" had been put onto our account for 4 hours and had expired at 5:49. The alarm had been going off every two minutes since then and they had "disregarded" it. But at 5:50, they called the Fire Department because the system was no longer on "Disregard".

As soon as we hung up from the alarm company, the chief called again from our house. I think I had me on speed-dial. Apparently, he and the other fire fighters were getting sick of visiting our house.

We managed to put the alarm on "disregard" for 24 hours and got the alarm company in there on Friday. They found water in one of the sensors and disabled it. I don't think I mentioned that we had a new roof put on the house in October and apparently it leaks. I am meeting with the roofer on Sunday.  I guess a house with a leaky roof is better than no house at all, so we should be happy.

Meanwhile, we have been spending most of our time in Westwood. But we did visit the NYC area around Thanksgiving to have the holiday meal with my brother. We stayed in a nearby place we found on Airbnb. This was great. Our hostess who was leaving for the duration of our visit was wonderful. She provided the codes for the keyless entry system. Which worked fine until the batteries in the keyless entry system failed. Fortunately, I was carrying the "emergency keys" she had also provided. We had a great visit and the entire Clark family was there. A rare treat and a good time was had by all because my brother had mandated a "no politics" rule for his house. Highly recommended.

Yesterday, Fox Hill Village talked me into giving a presentation on the web portal used by residents. For most of the presentation, there were six people watching and three of them were asleep - no exaggeration. This was my last such presentation.

Meanwhile, I have been spending a lot of time "bowling". I managed to finish my second segmented bowl. (A segmented bowl is made by gluing many small, carefully cut wooden pieces together.) Anyway, it came out looking pretty good - if you don't look too closely.

Oh - yeah. One other thing. This is a cancer blog, so I guess I should report on that as well. And the big news is: nothing new. Which is good. I am on "Day 8" of Cycle 42. In fact, I write this from Dana Farber while receiving a saline drip. All my numbers look good and the Velcade shot has been ordered, I should be out of here pretty soon.

Mostly Bowling . . .

Several people have pointed out that it has been a while since my last update and folks are wondering how I am doing. I am sorry for the gap between updates, but I was feeling a bit guilty about subjecting my faithful readers to all these updates when nothing really had changed. But, apparently, people want to be updated anyway.

So, the answer is that I am doing pretty well. I am about to start "Cycle 41" on Wednesday. Side effects seem to be very manageable and have actually been less bad over the last two cycles. I have not been drinking much and this poses a real challenge for Barbara, since she is now drinking for two, but she does not seem to mind. It seems that my energy level has been a bit better. It turns out that I am now grand champion for my current protocol. Nobody has been on it longer than me. Let's hope it continues.

As you may recall, my last report was mostly involved with "The Free Trailer". It is still parked up in my "meadow". I spent a good bit of time climbing around in the dirt underneath it soon after it arrived. I found that the water supply system had been ripped out as had the heating system. Also, the fresh water tank had pulled free from where it was bolted under the floor. I managed to re-secure the water tank and it appears that it will not be too difficult to purchase a water pump and get the water system working again. I also managed to get the "glide room" to deploy, but only by connecting an electric drill to the backup system. Next step is to wait for Spring when it is a bit warmer.

Another major accomplishment had to do with our boat. For the first time in three years, we managed to drive the boat to the loading ramp under its own power. Hooray! It started right up and ran all the way to the launch ramp a half mile away. Now admittedly, I did have to recharge the battery before attempting this navigational challenge, but I am highly optimistic about getting the boat into the water relatively early next year. Hopefully it will even be running. This year we took the boat out twice. I am hoping to use it at least 3 or 4 times next year.

Barbara went on a business trip last week - sort of. She has been a key member of the Long Term Plan Committee for Fox Hill Village and the Managing Director invited her and two others to attend the LeadingAge Annual Meeting and Expo in Indianapolis. It sounded very exciting to me and Barbara enjoyed the trip and learned a great deal.

Meanwhile, "back at the ranch", I have been spending a great deal of time in my workshop - primarily on my "bowling". A major incentive was that the "Segmented Woodturners of America" held their annual symposium in the Boston area at the end of October. For me as a relative newbie, this was a great event and I learned a tremendous amount.

Previously, I had been making my bowls from a large chunk of wood - typically from a fallen tree. With segmented turning, I will be gluing together small wooden segments and then putting that on the lathe.

I managed to make one of these bowls before the symposium, just so that I would not go in with total ignorance. It came out pretty well and I am anxious to do more of them. Even more importantly, it did not explode into a jillion or so pieces while I was working on it. Here is a photo:

Tomorrow is a big day for us. It is "Cat Day". It is the day that the cats move to Fox Hill Village. This is always a struggle since it is an understatement to say that they "do not travel well". They will travel in the back of the (covered) pickup truck. No - they do NOT ride in Barbara's new car. 

Tomorrow is also election day. I guess that is enough said about this election . . . 

The only other thing going on is the "Free Hot Tub". That I managed to obtain - not for us, but rather for my brother, Ken - the one who talked me into getting the "free" trailer and helped me move it up here. He is very excited about this. Me too, but for different reasons. I view it as "retaliation". But the report on this will have to wait until the next update.