Saturday, September 8, 2018

A Meeting with the Oncologist

I met with the Oncologist at the beginning of this cycle. What's is unusual about that is that it had been more than a year since I had met with the great man himself. No need really, since there had been no significant changes in my situation.

But in fact the side effects have been slowly getting a bit worse - month by month. Still not too bad and certainly nothing I can't handle. What worries me most is that the numbness in the bottoms of my feet have been working up to the tops of the feet and now to the area up to my sock line. Well - the feet aren't totally numb. They feel like I have a sock on all the time.

And there has also been a bit of tingling in my hands.

I wanted to ask him about the possibility of trying a reduced chemo dose to see if that lessened the side effects or the response to the medication without reducing the response too much. I figured that if my numbers went the wrong way after the chemo reduction, we could always go back to the old chemo dose, right?

He did not like the idea. He said that sometimes going back to the previous dose does not get the same response that it gave before the reduction. I guess I will take his word for it, but I will say that when I was in the hospital with a bacterial infection a few years ago, they did not seem to hesitate at all in taking me off chemo completely for a couple of weeks. Sure, my numbers went up, but they came back down again once I went back onto the chemo. But he said that does not always happen.

What he did say is that I should treat the symptoms. He suggested that when I get my Velcade, that I also get a full liter of saline instead of a half-liter. He suggested increasing my hydration. He told me that I should use Queen Helen cocoa "oil" instead of the Quene Helene cocoa "butter" that I had been using on my feet. He said it would absorb better into the skin. I don't know about that, but I can say for sure that it absorbs immediately and permanently into the carpet when it drips.

So, is this helping the side effects? Well, it's probably too soon to tell. I don't they they are getting any worse, but so far, they don't seem better either.

So, I am staying the course. I start cycle 73 next Wednesday.

Meanwhile summer in New Hampshire is drawing to a close. Boo-Hoo. It goes so quickly.

This year we bought a new boat. A "Party Boat". Barbara loves it. We can actually just walk onto it without risking our lives. We like to take it out at sunset for a picnic while underway. Very nice. Great for sipping wine.. Also, unlike the previous boat, this one starts.

 I am still trying to learn how to dock the thing. I put small dents in it during my first two dockings, but have not caused any more damage since then - either to the dock or the boat. My ego is another story. 

Tuesday, July 24, 2018

Summer in New Hampshire

After a very slow start, summer finally arrived in New Hampshire. We had to wait until July for this, but the last couple of weeks have been spectacular.

I started this blog post while sitting in a Chemo chair at Dana Farber. I am now in the middle of cycle 70 (3 weeks each). Nothing much has changed - including the fact that numbness in my feet continues to increase, but very slowly. They tell me not to worry about that until I start to have trouble walking. Thanks a lot for that.

I have been concerned with my overall level of physical fitness. Other than now having insufficient endurance, there is no particular reason that I should not be hiking and bike riding. So I need to work on that. We have an old stair-master and I have spending a few minutes every few days exercising on it. I have a portable DVD  player, and I decided to watch something would be culturally enriching. I have started The Complete Works of the 3 Stooges. Amazingly, they are not as funny as they were when I was in Jr. High School, but the episodes are all the perfect length for a workout.

We are now back at the lake for the summer. One downside of that is having a boat. This year, I set the record for getting the boat into the water. And (miracle of miracles), I had it running by Memorial Day. To do this, I had to replace the starter. Twice. I am getting so that I can swap out a starter in about an hour. The boat now starts easily - first time every time.

Unfortunately, as soon as I put it in gear and tried to make it accelerate, the engine stalls. For a while,  it ran well enough for cocktail cruises. What else does one need? But now, even that has become a bit questionable. A friend suggested that it could be a clogged fuel filter. I took the old one out and went to local marina and bought a new one. Also, I bought a new boat. I should get it by the end of the week. (The boat - not the fuel filter. I already have the fuel filter.)

I continue to spend a lot of time making wooden bowls. Back in April, the people at Fox Hill suggested that I do a show of my "Art". Eventually, they talked me into setting up a display of about 25 bowls and other turnings. When people asked, "How much for this one . . ?", I started by telling them that I was not trying to sell them. Eventually, I relented and added a price list. Much to my dismay, almost everything sold. I was pretty excited about all the money until I realized that I had not covered minimum wage.

So, I am not working on building up another "body of work". I am rather proud of two pieces that I have recently finished. The bowl is 10 inches in diameter. The vase is 22" high.

I do have one very sad thing to report. One of our cats disappeared several weeks ago. We assumed that she had snuck out when we were loading the car several weeks ago and got lost. Barbara and U had both spend hours walking and searching and calling. This morning, we discovered that our precious cat had hidden behind a desk and died. Very sad.

That's all for now. Enjoy your summer.

Monday, April 2, 2018

Sweet Springtime

Spring is here. I know that because I have spent much of the last four weeks traipsing around in the snow gathering sap to make maple syrup.

But before I get into that, I will give you the report on the cancer which is what this blog is supposed to be about. Fortunately, there is little to report. Well, the numbness in my feet is still slowly getting worse, but it is still not too bad. I guess it is better than numbness in the brain. I am now on "Cycle 65". A year ago, the doctors were amazed with how long this had worked for me. Let's keep our fingers crossed for another year or two.

I still have to visit Dana Farber two out of every three weeks. A month ago, I invited a former boss to Fox Hill for lunch. When she asked, I told her that getting the chemo was a lot like having a job, except that when I worked for her, she never had me bring in a 24 hour urine sample.

My other "job" is woodworking. I have managed to complete a few more wood turning projects. Here is a photo of my most recent favorite:

But lately, I have been focusing on making maple syrup. I did not make any last year, Sapping sneaked up on me and I missed it. I determined not to let the same thing happen this year. I decided to tap my trees in February. 

Even though there was some snow on the ground, I put my truck into 4 wheel drive and it easily drove down the dirt road. No problem. Until I tried to turn around. I got the truck totally stuck. Which meant that I had to walk home a quarter home to get the tractor. I drove the tractor up there to pull out the truck. I got the tractor stuck too.

Eventually, I freed them both, but it was a long afternoon. After that, my rule was to back the truck in so that I would not get stuck again. My new truck has a backup camera, but this does not show you trees that are beside you. I would have though that hitting a side mirror would sort of break it off in one piece. Nay Nay. It pulverizes the $300 mirror into about a thousand pieces.

Here is a photo of the earthly remains of my mirror:

But I got satisfaction, I just happened to have a chain saw in the truck and I made that tree pretty darned sorry, let me tell you.

Once I did not have to worry about the mirror, backing down the road got a lot easier.I could then carry the sap in 5 gallon buckets from the trees and load them into the back of the truck. It worked very well. Here is a photo of my sap boilers in action:

Barbara does not come with me to New Hampshire. For reasons that I do not understand, she prefers being warm and cozy at Fox Hill Village to the cold, darkness and snow of New Hampshire. Besides, she is getting deeply involved with the governance of Fox Hill Village and has been nominated to the Board or Directors. That should keep her busy.

The other problem with Winter in New Hampshire is that the Magic Basket does not work. In the summer, there is a basket in the laundry room into which I can throw my dirty socks and undies. A few days later, they show up in my socks and undies drawer all clean and folded. For some reason, this does not work in the winter. Barbara asked me what I do when run out of undies. I told her that I go to Walmart and buy more.

So, that's the quarterly update. No news is good news. Let's hope it stays that way.

Best regards to everyone for a happy Spring.

Thursday, January 4, 2018

Happy New Year

It has been a while since my last post and I decided that it is time for an update. Yesterday, I started "Cycle 61" at Dana-Farber. Today, we are both at Fox Hill Village looking  out the window at the snow that is supposed to hammer us. We don't mind because we don't have to go out into it.

Mostly, things are pretty much the same, though I have to report that the numbness in my feet got worse all of a sudden a couple of weeks ago. It had been a slight numbness just on the bottoms. Now, my whole foot feels funny. I call it "numbness" but it is really more like feeling like there is a sock bunched up on my foot. Not that big of a deal really. It doesn't hurt. It is just very strange.

So, the oncology team talked about possibly reducing my Velcade dose, but decided against it since mostly things are going very well. I asked if we could try reducing the dose and then going back up if that did not work. They said that would violate the protocol of my clinical study. 

There are a couple of other weird things going on, but nothing too disruptive. An occasional headache-like pain in the back of my neck. Cramps at night in my legs and sometimes in my hands during the day. And of course, reasons for frequent use of Imodium. There is no way to know if these are symptoms, side effects or stuff going on that has nothing to do with the cancer.

But all these things are quite minor in the grand scheme of things. I can still entertain myself in the wood shop and I have been doing that a great deal at Fox Hill Village. Here are a couple of bowls I created over the last month or two.

I have lots of projects in mind that will keep me quite busy. And that is just wood shop projects. Let's not forget pottery and computer programming.

I also managed to send out this year's holiday newsletter. Most of you have probably already seen this, but if not, you can find it by clicking the following link:

2017 Holiday Newsletter

There is one thing that was a bit funny. In the newsletter, I said that Barbara is now a "Professional Mah Jongg Player" because she plays with some friends for money. Each of them brings five dollars and usually wins or loses a couple of bucks. So, technically, she is now a professional. But a few days ago, she overheard one woman at Fox Hill pointing at Barbara and whispering to another resident, "You know, she is a professional Mah Jongg Player."

So, that's the update. I will probably hold off on another one for two or three months unless something interesting happens.

Friday, October 20, 2017

Warren the Lumberjack

Because someone asked me about blog updates a few days ago, I figure it is time for an update.

And the update is ....

Nothing new to report!

Which is good news.

I am now in the middle of Cycle 57 - each is 21 days long. I am still in the clinical trial of  Panobinostat - combined with the standard "RVD" therapy. I go to Dana-Farber on days 1 and 8, so I was there (with Barbara) on Wednesday. Numbers seem to be mostly holding, though they are not quite as good as they were a few months ago. The doctors tell me that my treatment has greatly slowed down the disease. There are many side effects to deal with. Too many to mention. Most are minor. None that I view as a really big deal.

So, with that out of the way, I will move over to more pleasant topics.

Autumn here at the lake has been spectacular: warm clear days with very little rain. Almost makes up for the lousy June we had. Of course, it also signifies that summer is over. Well, we knew that summer had to end eventually. We took the boat out of the water this year before it got really cold - which was uncharactertisticly smart on our part. Normally I like to wait for a rainy, freezing cold day.

Unfortunately, the cold and wet June did not help my garden much. This year, I decided to focus my efforts on my New Hampshire garden. Wanting an early harvest, I planted two full rows of radishes. I got a total of three radishes. I share the garden area with a neighbor and when I complained about my harvest, he said, "Don't feel bad. I only got one."

I had three good tomato plants that all seemed to be headed for bountiful productivity, but these suffered a sudden, well planned, and very effective attack, by Tomato Horn Worms. They removed very leaf from all my plants in a few days while I was not looking. Clever beasts, they are. Though I must say that in the long run, things did not end well for them. Good thing I discovered them when I did. If they had gotten any bigger, I am not sure who would have won the battle.

I also set a couple of zucchini plants. These always grow and produce bountiful veggies. In 30 years of gardening, I have never had zucchinis fail. These failed. 

Other than that the garden was very successful. Oh - wait. That is all I planted. Almost. But I did have reasonably (good) luck with wax beans and since those are my favorite veggies and the plants are still producing (slightly), I am very happy about that.

I spent a lot of time over the summer in my wood shop. On nice days, I open the two garage doors in front of the shop. This lets in the sunlight and often a nice breeze. Also mosquitos.

I "turned out" a couple of very nice vase shaped turnings as well as two bowls as graduation gifts for our nieces.

Then, someone gave me 3 cherry logs, each 16' long that had been sitting in their back yard for several years. Some rot had started, but there was lots of good wood remaining. Then someone else offered me some Black Walnut which has me totally excited, though so far, they have delivered only two pieces (from New Jersey). And over the last few days, I found an ash tree on my property that had fallen. I cut it up yesterday and it looks like there is some very interesting wood in there. As you can see from the image below, I have been busy with Lumberjack Activity.

And I am in the middle of another project to convert a treadmill that I found at the dump into a drum sander. That should be interesting if it works.

In fact, I have been creating so much sawdust and wood chips with my chainsaw and my lathe that Barbara says that my shop looks like the inside of a hamster cage. I have been eating a lot of nuts lately. I wonder if the two facts are related. I have also found that I can store acorns in my cheeks.

Thursday, July 20, 2017

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?

Saturday, June 10, 2017

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 . . .