Friday, December 21, 2018

The Crippled Lumberjack

The last week has been a bit tough - nothing too bad, but worthy of a blog update,

The problem started last Friday when I was in NH. A large white pine had fallen and I wanted to try making a very large one piece bowl. I went up there with m chain saw and liberated a few sections. As I was carrying one log - about 18" in diameter and maybe 16" long, I started losing my balance. I tossed the log forward and then allowed myself to fall backwards where I knew the ground to be relatively soft. Unfortunately, I banged my thigh on a bit of a stump. Didn't hurt much, so I rolled the log to the truck - along with another similar log - and was on my way.

The next day, the leg hurt a bit more. No big deal. I drove back to Fox Hill as planned.

On Sunday, it was still getting worse. I figured that there was a bruise in there somewhere and the internal bleeding was continuing. I called my primary care doctor. I asked him if I should stop the anti-coagulants and he said definitely not. I asked him if I should have them check it out in the ER and he said yes.

In the ER, I asked them if I should stop the anti-coagulants and they said definitely not. They took a completely unnecessary x-ray and sent me home.

The leg continued to get worse until I had my regularly scheduled visit with my oncologist. By this time, I was using a wheel chair because of difficulty walking.He took one look at my very swollen leg, which by this time was pretty much all purple colored and asked, "Why didn't you stop the anti-coagulants?"

So, he cancelled treatment for that day, but told me he was happy with my numbers which we had a couple of cycles. I will start up again in two weeks. Meanwhile, no chemo therapy and no anti-coagulants.

So now it is Friday. I seem to be better than I was yesterday and might be mostly ready to give up the wheel chair - possibly in favor of a walker.

What really upsets me is that I have not been down to the wood shop for almost a week. Hopefully in a few days. I have to get back to work on that log I was carrying when I fell.

As you know, I normally like to include a relevant photo or two. I considered a photo of my swollen black-and-blue leg, but decided you might not need to see it.

Tuesday, November 13, 2018

Back on Chemo

Things are a little bit different since my stroke. Since the blog is supposed to keep any readers updates as to what is happening with me, I figured that my faithful readers (if any) should get an update. Also, this blog is my personal record of what I am doing. So, here goes:

I am back on chemo. Same Old, Same Old? Well, not exactly. There have been a number of changes since my stroke.

1. They had me take a two week break from chemo. Initially, this was going to be one week, but they changed it to two weeks at the last minute.

2. I am now taking Enoxaparin which is generic for Lovenox. Well - not tactlessly "taking". It is more that I am "doing shots". Putting it that way makes it sound like more fun than "injecting myself". Actually, this is a pain in the butt. Well, to be more exact, it is a pain in the belly. I give myself these injections twice a day - in the belly rather than in the butt. Fortunately, my belly has increased in size over the last couple of years, so I now have what they called in the Air Force, "a target rich environment".

3. I am now taking Atorvastatin (generic for Lipitor). Even though my cholesterol is fine, they tell me that this reduces the chances for another stroke.

4. I have been wearing a heart monitor for the last two weeks - with two more weeks to go. I stick this sensor onto the middle of my chest and it records and transmits heart pulses. They want to find out if I have Atrial Fibrillation which can throw clots. The good part about this is that the monitor thing has flashing lights. Barbara thinks it makes me look like a robot. I don't know whether that is good or bad, but I am trying to learn to walk like a robot in order to stay in character. I will also start working on my "robot voice".

5. The biggest change is that they want me to stop taking Revlimid. This is one of the four chemo drugs I have been taking for the last 4+ years that has held my cancer at bay. This is what I find the most scary. I will also note that they waited until the last minute to tell me about the change, so I had already ordered the next set of pills. I now have more than a thousand dollars (my cost) of Revlimid in a drawer in my office.

So, the big question is whether the new treatment regimen will hold the cancer down without the Revlimid. It will take a few cycles before we see how it is working. Presumably, if it does not work, the doctors have some more tricks up their sleeves. For example,  there is this whole Immunotherapy therapy thing that they have not tried on me. And then I am also thinking that we could always go back to the original "RVD Plus Pano" and take a chance that the Enoxaparion will be enough to prevent more strokes.

Meanwhile, I have been feeling pretty good. I am tired and sleeping a lot, but all in all I am doing very well.

One thing that is kind of funny is that I have been cursing one of my other drugs, Desxamethosone for five years. It makes me feel wired and I sometimes have trouble sleeping for a couple of nights after taking it. But, last week, I noticed that I was feeling rather draggy. I had lost a lot of my "zip". But then a few hours after taking Dex as the start of this latest cycle, I was back to my old lively self. I figure it must be the Dex. I think it has me on a permanent high - like a caffeine high. That is probably why they have me taking it even during my break weeks. Better living through chemistry and all that. Highly recommended.

Thursday, October 18, 2018

Blood is no longer thicker than water

Blood is no longer thicker than water - at least not my blood.

They sprung me from the hospital late Wednesday afternoon. They never did particularly find out what caused my stroke, so they decided to thin my blood by getting me to take Lovenox. Well, I don't take it; I inject it, twice a day. They also want me to start taking statins - not that I have high cholesterol - just that it seems to reduce recurrence of strokes. They also tell me that it might make me feel achy.

My hospital stay was relatively uneventful - as it should have been given that all they did during my stay was to give me a single CAT scan which took about five minutes. I went in Monday at around 10 AM and cooled my heels in the ER for 11 hours until about 9:00 PM. Barbara and I sat there and read books. They then moved me to a shared room on the 16th floor where they connected a bunch of wires to me using special tabs. These become one with the patient's skin, so that they cannot be removed. These tabs are then electronically wired to some device that alerts the staff if you start to fall asleep so they can come in to measure blood pressure or poke you for some other reason.

But, the important thing is that I am now out and can get to work shooting up the drugs that will thin my blood to prevent further strokes.

My oncologist tells me that he is taking me off of chemo for a couple of weeks so that I can recover. I am looking forward to the break. It will be interesting to what happens with my side effects.

So, after all of this, I seem to be pretty much OK. I might not be quite as solid on my feet as I was a week ago, but I don't have any trouble standing or walking, so I am not complaining. I will stop writing now. I have to go give myself a shot.

Wednesday, October 17, 2018

Getting my head examined

  Apparently, I have had a stroke. Not that I am paralyzed or anything like that - I just have intermittent bouts of severe dizziness. When this happens, I can't walk without leaning on something or using a walker. It first happened last Friday. The first couple of times it hit me, I was so  dizzy that I got motion sickness and threw up - once so violently that I fractured a rib. It was not to bad over the weekend, but on Monday, my PCP sent me to get an MRI - of my head. Barbara agreed that getting my head examined was a good idea; she had been recommending this for years.
  So, here is sit at the Brigham - and I don't mean the one with all the flavors. Spent all day yesterday waiting for a "neurological workup". They want to figure out what caused the stroked in the first place. They don't want me to have any more - since strokes are generally not regarded as good things.

  Last night, they moved me into a regular room. I am waiting for something, but I am not sure what.
  Maybe I will finally get caught up on some of the computer stuff.

Yesterday, one of "neurology" doctors stopped by to talk to me. His name was "Doctor Young" and if ever a guy was aptly named it was he. This guy looked like he was barely out of diapers. I expected him to take notes using crayons. Fortunately, he did not bring his Teddy Bear into the room with him. Barbara figures he must be some sort of prodigy.

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.