Friday, December 26, 2014

Merry Christmas

Merry Christmas Everyone

I am currently sitting on an Amtrak train on the way to visit one of my brothers in New York City. On Saturday, he and I will head to northeastern Pennsylvania to visit our other brother and his family at their lake house. I plan to return to Fox Hill next Tuesday. Barbara has declined to accompany me in favor of working out some of the decorating issues at Fox Hill. She is happy to leave me with some "Brother Time".

I am just coming off of a "break week" during which I have felt particularly lively. There were several days when I was very tired - taking up to 4 hours of naps after getting a good 9 hours of sleep overnight. But still, this was only for a few days and when I was not sleeping, I was feeling quite lively and quite strong.

We went to Dana Farber yesterday to start Cycle 9. Each cycle is 21 days and you may have noticed that I try to update the blog after each doctor visit. After 9 cycles, I am finding that the reports do not differ very much. But I guess that in itself is news.

So, yesterday, the doctor told me that the numbers continue to come down, though relatively slowly. His goal is to get me to a stem cell transplant sometime in 2015 and he says that he likes to see the sort of slow steady progress that I have been showing. He says it tends to last longer.

You may recall that this is part of a clinical trial of a drug called Panobinostat. It is not yet approved, so I guess I am lucky to be part of the trial. Cycle 9 is using lower doses and fewer doses of some of the other drugsd than cycle 8 (which means only one trip to DFCI per week rather than 2 - Hooray - as long as it still works). The thing is that they give me a log form to fill out. And, the slots to fill in do not match the schedule of drugs they told me to take. One would think that this error would have been discovered by the other patients who are on cycle 9. Hey - wait a minute? Do you suppose that maybe there are no other patients on cycle 9 with this drug? Barbara tells me that I am jumping to conclusions and I suppose I am. Really I don't mind. It seems that the drugs are holding the cancer down and I continue to tolerate them, so why not?

Meanwhile, here I sit on the Amtrak. Interesting. It looks like it will be a half hour late getting into Penn Station. So far, the ride is reasonably comfortable, though I think I am getting bounced around more than I would in the bus. The Amtrak fare is close to $150. I think the bus costs $25 and is just as fast. But the Amtrak station in only 5 miles from Fox Hill.

Of course, this fare includes the $38 up-charge to travel business class. I am trying to figure out what I am getting for my $38. The conductor told me that I can get a complimentary beverage in the dining car. So, I picked up a $38 dollar bottle of cranberry juice. I would not have minded as much if I could have gotten a $38 half bottle of cheap wine, but apparently that is not on the menu. I am also entitled to a free copy of the NY Times - which I already read on-line this morning. Oh - and there is a couple more inches of leg room. That's it.

It is the first car on the train (after the engine). I guess that is good, but I can't help but wonder why this is an advantage. It is furthest from the dining car, though anyone who has ever eaten the Amtrak food might consider this another advantage. But, if something goes wrong, the first car is most vulnerable, right? The first few cars work as a kind of cushion for the cars as the end of the train as the whole thing collapses. Also, we have the longest walk from the terminals.

I think there are about 8 cars on this train and only one Business Class car. And the business class car is nearly empty. I wonder why.

The other thing is that Amtrak now offers free Wi-Fi. It doesn't actually connect to the internet most of the time and when it does, it is VERY slow. But it is Christmas and "it is the thought that counts". I wonder if the internet service in the the rest of the train is the same internet that doesn't work in Business Class.

Maybe I will travel coach class on the way home.

Thursday, December 4, 2014

Another Day of Chemo

Yesterday, Barbara and I drove to Dana Farber for the start of Cycle 8 of my chemo regimen.

We had an early appointment - 7:15. When we arrived there, Barbara looked at the schedule and said,"We could actually get out of here early today." Big mistake. I gave her a dirty look and she realized immediately that she had jinxed us. Now, the truth is that as an engineer, I absolutely do NOT believe in jinxes or such like. In spite of knowing that they are totally meaningless, however, I have found them to be profoundly effective.

You may recall that last week, my phosphorous was too low to get treatment. So, over the last week, I took phosphorous pills and loaded up on foods that are high in phosphorous. And my phosphorous levels were plenty high enough. Someone suggested that I might be "phosphorescent" enough for them to use me at the top of a Christmas Tree. Nor did I burst into flame - even though besides taking phosphorous, I am also taking Magnesium. No - the problem had to to with Neutrophils which were way too low. It registered 0.77 where they require at least 1.00 to give me chemo.

Well, clearly this was bad new for the chemo, but I explained that this had happened before and that if I exercised, I could probably get the number to come up. So, I went to the stairway and managed to do 20 flights after which I submitted to yet another blood test. This got the number up to 0.93. To me this indicated that I was improving at the rate of .08 per flight and that all I really needed to do was to climb one or two more flights. The infusion nurses did not agree. They called the Clinical Study nurse. While waiting, I headed back to the stairway and told them to call me when the nurse showed up. I said that if I didn't answer the phone, to send someone to the stairwell with an Automatic Defibrillator. I managed another 17 flights before the nurse showed up. She decided I needed a shot in the arm - which she gave me (literally) and told me to wait two hours and get my blood drawn again. By this time I was too beat to do any more stairs, so I went outside and wandered around looking for lunch.  Which I found and brought back to Barbara.

They redid the blood test and this time it had nearly doubled - to 1.78, so I got my chemo. We finished everything at around 2:45.

One of these days, I am going to look up what Neutrophils are.

I wish I had cancer marker numbers from last week, but they are still not posted. I had hoped for additional numbers this week, but I am not not sure they are retesting.

Besides that, there is not much else to report over the last week. We are still getting settled in the Fox Down Abbey apartment. We had a "punch list meeting" this morning which went well. And I managed to make another small bowl.

Last Saturday, I bought a 5 foot tall Singing Santa which Barbara hates. It was not my fault because it was on sale. Barbara says it scares the daylights (well - not exactly "daylights", but you know what I mean) out of her every time she sees it. At first glance, it appears to be an intruder in a red suit. She says that it even scares the cats. They stand in front of it and meow. I think they want it to pet them.

There is a switch on it that will cause it to randomly (and loudly) sing Christmas Songs - yes - his lips do move. I am thinking of throwing the switch. This will get Barbara into the Holiday Spirit and prevent her from being surprised when she sees the Santa. It will also most likely get the two of us (me and Santa) thrown out of the house. 

Thursday, November 27, 2014

Happy Thanksgiving everyone. We are enjoying the day in our new apartment at Fox Hill Village. Finally - Hooray! More about that later.

Yesterday, we went to Dana Farber - got there at 9:00 and left at 4:00 and did not get treatment. Apparently, the blood from the first lab draw had coagulated, so they had to redraw (which of course meant stabbing me again). When that result came back, my phosphorus was too low. I didn't even know that I HAD phosphorous. Anyway, they made me eat yogurt and drink milk and Coca Cola. Then they drew more blood and tested that - to find that the phosphorous level had not changed, so they kicked me out and told me to come back in a week.

What this means is that I will end up having two weeks of "break" instead of one week. It will be interesting to see what the numbers look like after this longer break. Meanwhile, the numbers we have so far from yesterday look pretty good - in that they are down slightly.

Here is what the graph looks like:

I have been feeling pretty good during this last cycle. Still tired, but not as tired as I had been. Foot bottoms are still pretty numb - and might be getting worse. They are doubling up on the drugs they are giving me to combat this. These drugs sometimes make me dizzy. Next maybe they will give me something for the dizziness. And that will probably cause some other side effect and then they will give me something else to combat that and so on. 

But enough about cancer and its treatment. I would rather talk about moving back into Fox Hill. We have been coming down here and staying in the guest suite when it is available. That has been a real pain; it felt like we were moving twice a week. Now that we have our own place, we can come and go as we want and we plan to have New Hampshire stuff and Massachusetts stuff - which means No More Moving.  The apartment came out very well and we are very happy with the result. The first thing I did was to set up my office and get the internet working. Barbara  has spent the last few days organizing her shoes. She also spent a little time on the kitchen. This has been taking a long time because, for reasons that I do not understand, every dish, pan, glass and item of silver has to be rewashed before it can be placed. Fortunately, we have the same kind of dishwasher that we have in New Hampshire, so we already know how to work it. We can't say the same for the other stuff. It took me 10 minutes to figure out how to heat water on the stove top. On Monday, we will call MIT to see if they offer courses on how to operate the washer and dryer.

Here are a couple of photos: 

My office:

The kitchen:

Since we will be seeing the doctors again next week, I will try to do another blog update then.  

Meanwhile, I am supposed to load up on stuff that is high in phosphorous.  I looked phosphorous up on Wikipedia and found that it will glow in the dark and that it is used for incendiary bombs and matches. Looks like I will be staying away from open flames for a while. 

Friday, November 14, 2014

Mystery Shirt

As you may have noticed, I try not to update the blog unless I have something to report. Normally, the updates are after a visit with a doctor, but this one is not, so there is noting very new on the medical front. I will say that I am still solidly on the plateau and the numbers that have come in since the last update confirm this. It would be good if they were dropping, but at least they are not going up.

The reason for this update is that I received a mystery gift in the mail about a week ago. It was a very humorous shirt which I really like. Unfortunately, there was no indication as to who it was who sent the gift. Here is a photo of the shirt being modeled by a particularly attractive male model:

So - I am guessing that whoever sent the shirt is a blog reader. To you, whoever you are, 'fess up if you want - or not if you wish to remain anonymous. Either way, know that I am enjoying the shirt.

Thank you.

Meanwhile, our renovation continues and seems to be on track for us to move back into our unit during Thanksgiving week. We are anxious to have our own place again. A friend slipped this cartoon under our door. I really feel like this guy:

Saturday, November 8, 2014

Still on the plateau

As I write this, it is Saturday and we are currently at Fox Hill Village. I will be heading into Dana Farber this morning for another velcade injection and then back here. Later this afternoon we will be going on a gallery tour in Boston. I will thus be exposed to art. Perhaps this will be good for me.

Mostly, I am feeling OK, but I get tired very easily. Last week was "Break Week" during which we could stay in NH and I could work on my various projects - except that I was limited to what I could do in a day before I got really tired. I get out of breath and often need to sit for a while. Sometimes, I get very sleepy and I take frequent long naps.

I am still working on my "bowling". I managed to get four very large fresh oak logs, each being 20 inches in length and 20 inches in diameter. I cut them into reasonable bowl-sized pieces with the chain saw. Barbara thinks this sort of activity could contribute to my being tired.

The other thing is that the numbness in my feet gets worse every cycle. They now have me taking yet another pill to help with that. It seems to be working. I worry that these will create some other side-effect and then I will need another pill for that and so on. . .

I am just starting Cycle 7 of 8 cycles. According to the labs from Wednesday, I seem to still be on the plateau although one of the numbers is down a bit which is good. What they are hoping is that over time, the numbers will start to come down even more. Apparently this would not be unusual. They are still hoping to get the numbers down enough for me to have a Stem Cell Transplant.

I just learned that in December, I will go to a "Maintenance Mode". The difference will be that I will get Velcade and Dexamethasone only half as often - which is great because that means only one day per week at Dana Farber and thus no need to stay at Fox Hill for several days each week. In other words, just when we get to move into our renovated apartment here, we won't have to be here as much. Funny the way things work out. But there is a good chance that with winter approaching, we will choose to spend more time here "down south" in Massachusetts.

Speaking of which, the apartment has reached a point where we can see progress every time we drop by. The kitchen cabinets and counter tops are in and they look great. The washer, dryer and dishwasher have been delivered and are ready to install. They are painting the walls.

Entry Area


Barbara's Office Area off Kitcen

We have told the builders that we are moving back in on November 24. Does this mean that they will be done by then? I did not say that. What we have told them is that we are moving in on that day. It could be interesting. We just dropped by an hour or so ago and there were 5 guys working there, even though it is a Saturday. I think we have their attention.

Still, we drop by at least twice a day on days we are here at Fox Hill Village. For example, we visited late last night and again first thing this morning because, according to Barbara, "it will look different in daylight". Barbara loves visiting and seeing the progress. I think she is trying to plan her closet to maximize the number of shoes that she can fit. 

Thursday, October 16, 2014


We went to Dana Farber yesterday. Unfortunately, we had a 9:15 appointment, so we left Meredith at 6:30 giving us 2:45 for a normal drive of just over 2 hours. It took us 3:15 to get there. But once there the day went relatively quickly. Only a 20 minute wait for blood work and then almost no wait at all to see the doctors. We were out of there in record time for a "first day of cycle".

Meanwhile I have been feeling pretty good with minimal to normal side effects. I am very tired on some days meaning that all I want to do is to sleep. BUT - if I drink some caffeinated coffee and get up and start doing things, I seem to be able to have a pretty normal day. The other thing is that I sometimes get quite winded very easily - by walking up a flight of stairs or up an incline. Other times, this is not much of a problem. The third thing is that the bottoms of my feet feel pretty numb. This does not slow me down, but feels kind of weird. And then, finally, my muscles seem to be disappearing. I am getting skinny - except around my middle. The doctors say these are all normal side effects.

But if my body is tolerating the chemo fairly well, it seems that the cancer might also be building up a tolerance as well. There are three main numbers to be watching. From yesterday's blood test, one has been dead level for the last three cycles and one jumped last cycle, but was down nicely yesterday. We are still waiting for the results from the last (and most important) one. Doctors say that I might have reached a "plateau" but that there could be a delayed effect of the experimental drug and we could see more progress. At least (hopefully) things are not getting worse.

Meanwhile, I have been pursuing my "bowling". Not the kind of bowling where you get to wear the really cool "bowling shirts" and cool "bowling shoes". In fact, if you got to wear special shoes, Barbara would probably be into it more than I am. No - this is the kind of bowling where I make bowls on the lathe. I have this set up so that I can do it in either Meredith or FHV.

One issue is that my doctors say that I should not be breathing any dust. Bowling makes lots of dust, so I bought a special helmet that includes a face shield and a fan to blow filtered air across the shield. It works pretty well, except that Barbara says I look like one of those dogs who are forced to wear the "cone of shame" things so that they can't scratch themselves. So now, I feel humiliated. At least my bowl turning skills have improved a bit. I made two bowls today. One came out pretty good, but the other became by second "bottomless" bowl. Fortunately, I got enough good ideas from blog comments that I will be able to find uses for these.

Here are some "Bowling" photos:

Warren at the FHV Lathe
Wearing the "Cone of Shame"

Friday, September 26, 2014


OK - OK - I get it.

Based on the feedback from yesterday's update, I have learned that what my faithful readers really care about is Barbara's new shoes.

So, therefore, by popular demand, Barbara agreed to model them for the camera. Here they are:

As much as I hate to admit it, they are really cool.

Thursday, September 25, 2014

A Day of Chemo

Yesterday, we spent the day at Dana Farber (DFCI). I will start by reporting that the doctors seem pleased with our progress and the way the numbers are running, even though they didn't yet have the numbers from yesterday's labs. We are now starting Cycle 5 of what they tell me will be a total of 8 cycles. Each cycle is 21 days which takes us to the first week in December.

Mostly, I am still feeling pretty good, though I was pretty tired during my "break week" which was last week. No real complaints though.

Meanwhile, this cancer thing is quite time-consuming. Our objective at DFCI was to get a shot and an infusion. Sounds simple enough, right? We left Meredith at 7:45 and then again at 8:15. We finally got to Fox Hill Village at just after 6:30 PM. What took so long??

First, we left the house right on schedule at 7:45, figuring 2 hours plus a half hour margin for traffic. When we got to the center of town, I remembered something that we needed, so we turned around.

OK - so if you must know, it was my "24 hour urine collection" required on day 1 of every cycle. So we went home and started over. We then ran into two accidents and a another big traffic jam getting into Boston. Barbara dropped me off out in front of DFCI - with my "special" bottle and I registered for "labs". I was 40 minutes late - the first time we had ever been late. Not that it mattered.

The rule at the lab seems to be that they always run 30 to 60 minutes late. So, if you arrive 30 - 60 minutes before your appointment, they see you 30 - 60 minutes after your appointment. If you arrive 30 minutes late, they see you 30 - 60 minutes after you get there. There seems to be no way to game the system. Of course, this wait can mess up all the appointments that follow.

Which did not happen yesterday. The lab took my blood samples (and the special bottle) after 35 minutes of waiting and we were up for the next appointment at 11:30 which was for an EKG (scheduled for 11). We talked them into holding off on this so that we would make our 11:30 appointment with the doctors. We then waited 3 1/2 hours for the doctor who talked to us for 5 minutes.  And that was the early doctor. She approved the infusion and other drugs.

The rest of the day was very efficient - at least the DFCI portion. (Things often get very efficient as we get close to quitting time. Imagine that.) Anyway, after a minimal wait they brought me into an infusion room, hitched me up to a saline IV which is the longest infusion (60 mins). Simultaneously, they brought in the EKG machine and tech - 3 EGKSs over 10 minutes. Soon after that, the pharmacy delivered the Zometa, so that added that to the infusion (20 minutes) and then gave me the Velcade shot. And then the second doctor dropped in to say, "Hey, Warren - you are doing great. The numbers are great. Everything is Lovely". We left there at around 5:00 PM - rush hour in Boston - which amazingly was not too bad.

All that was left was a quick trip to the drive-thru prescription pickup at the CVS on the way to FHV.

Which was not to be. We got there at 5:30 and sat in the drive-thru for 50 minutes - blocking other customers for most of this time. It seems that they had the pills, but they could not enter them into the computer and it violated "policy" to give me the pills before entering them. After a half hour, I asked the Assistant Manager why they could not give me the pills and deal with the computer later. She said that they would be fired for violating policy. I very carefully and politely explained that if she did not have the authority to approve deviation from the policy that she would call her manager at home to see if the store manager had authority and if not to call the district manager and then the regional manager and all the way up to the president of the company if necessary. She asked me if I would like to wait inside and we told her that we were going to wait right where we were until we got the pills - even if it took all night. By this time, the line of cars behind us was around the corner behind the store.

Anyway, we had the pills 5 minutes later after signing a standardized form that nobody in the store had previously seemed to knew about.

So that was our day. I did get a lot of reading done.

Also, after all that, I almost forgot to take the drug last night.

So last night, and for the next two nights, we are staying at Fox Hill Village - in the guest suite. This is very nice, but not as nice as having our own place. Our apartment is still totally torn up and looks much the same as it did 2 weeks ago when we were last here. The difference is that the wiring is now mostly done as is the plumbing.. This morning we had the "electrical walk through". We did find a couple of things that they had missed. They seem to be on schedule and my guess is that sheet-rock will be starting to go up soon.

Barbara used the afternoon for a trip to Designer Shoe Warehouse - ostensibly to "return" a pair of shoes. She only bought only one additional new pair which makes the trip quite a success from my perspective - less so from hers. But I have to admit that the shoes she bought are pretty cool. I am thinking that maybe it is time for me to develop a foot fetish.

Meanwhile, I went down to the FHV workshop to try to make a bowl. And I did - well sort of. It was coming out to be my best bowl yet, but then I sort of created a defect. See if you can figure out what is wrong:

Yup - you saw it didn't you. That teentsy little hole in the bottom?? It turns out that the best way to hold a bowl onto the lathe is to cut a round slot in the bottom. I have a tool that grips this slot and attaches to the lathe which allows you to hold the bowl by the bottom while you hollow it out. Well, I sort of forgot about the slot and the clamp and was hollowing out the bowl when suddenly, the clamp appeared in the bottoma. Not good. So, Now, I am trying to figure out what to do with this "thing". The leading candidate is to make a spindle for the bottom and turn it into a goblet for holding candy or nuts or something like that. Please let know if you come up with any better ideas.

Friday, September 5, 2014

Many Projects

As I start to write this blog on Friday afternoon, we are sitting in a guest apartment at Fox Hill Village. We are no longer allowed to stay in what was formerly our unit 271. It has been mostly gutted. Barbara and I are still speaking to each other.

Well - first the cancer update. We started a new cycle on Wednesday - which meant a whole slew of blood tests - not that I really care how many samples they take once the punch the hole in my arm. I keep hoping that maybe the Medieval doctors were on to something with their blood letting that modern medicine does not yet fully understand. Anyway, the numbers continue to come down - though slowly. The clinical trial nurse said that she thinks this is better than having them come down fast, because then they tend to go up fast. Let's hope she is right about that.

The one thing that I noticed since the last blog is how lively I have felt. I don't know if this is a chemo side-effect or if the cancer has been knocked down or what, but I have enjoyed being very active. Of course, I am often totally wiped out at the end of the day, but I really don't mind that.

As I mentioned above, we are kicked out of our FHV apartment during extensive renovations. It looks like we will be out until sometime in very late November. For this week (Wed - Sat), we are staying in the FHV guest suite. This allows us to have our meals here (since we are still on the meal plan), to use the FHV workshop and to see some of our FHV friends.

It also allows us to visit what's left of our apartment - which is not much. But it is good to go in there and see where the walls are going to be. And also to change our minds about where we want them. The construction guys have been pretty accommodating - so far at least and our adjustments so far have been minor. It is interesting that other FHV residents seem more interested in seeing the apartment torn up than ever were interested in seeing it prior to start of renovations.

The down-side of this is the frequent meetings with the designer and visits to showrooms. Barbara is really into this. Let's just say that I am less into it. I enjoy visiting the unit and talking with the construction guys. Barbara enjoys visiting showrooms.

Last week was a chemo "break week" and I used it constructively. In fact, I rented real construction equipment - a full sized CAT 311 Excavator. What a blast. As I kid, I always loved playing in the dirt, and this gave me a chance to do that "big time". There was a field on the land I bought a couple of years ago that was covered with stumps and large boulders. I used the excavator to clear and smooth it. There are also roads going through the property - some of which loggers had created last year and others that they had destroyed. Anyway, I did repairs on some of the roads, thinking that they would be easier to use without giant stumps in the middle. At first, the excavator was a bit of a challenge to operate, but I got used to it after an hour or so. I did partly tip it over a couple of times, but managed to recover just in time. That was exciting. I tried to get Barbara to help with the operation of the excavator, but she was not as interested in it as I was.

My other new activity is that I have always wanted to make wooden bowls on the lathe, so I have taken a couple of lessons from a guy who lives near Fox Hill Village. I am just now getting started with this and will report in the next blog update after I have made more progress - assuming that I actually manage to make more progress. We'll see.

Thursday, August 14, 2014

Starting Cycle 3

We went to DFCI yesterday (Wednesday 8/17)  for the start of cycle 3 of the clinical trial. This involves getting a bunch of blood tests, an EKG, and an interview and quick exam from the doctor. They give me a 45 minute IV and a 3 second shot. And then we could leave. We got there at 10 and left at 4:15. Mostly we sat and waited. At one point, after getting an exam by one doctor, we waited an hour for a second doctor - even though we were already very late for out next appointment. When he finally showed up, he was in the room for less than 60 seconds. Fortunately, this was enough time for him to wave his hands over me and sat a few magic words. In anticipation of this, I have set up my tablet to watch videos. Yesterday, it was The Godfather. I had not seen it for years and it was worth watching again.

Fortunately, things continue to go fairly well. The doctors are satisfied with the response to the drugs and side effects continue to be fairly minor. These include some cramping at night for a few days of the cycle and some numbness in my feet which they call peripheral neuropathy.

We had a good break (10 days) in Meredith which we enjoyed very much. We had some company. I did some gardening. We have been growing some beautiful tomatoes into each one of which some bird has poked its beak. I covered them with a plastic net. If this does not work, I am trying to figure out how to booby-trap a tomato to explode if pecked. (just kidding)

I spent a lot of time trying to get our boat running. I plan to spend more time on this Sisyphean endeavor whenever I am in Meredith. .My goal is to get it running reliably before it is time to take it out of the water for the winter.

We also spent some time trying to recover from the lightening damage of a few weeks ago.

  • The control panel on our generator was blown as well as the circuit board on the switch that switches in the generator during a failure. They replaced the control panel, but there is a 4 week lead time on the switch. These things are expensive.
  • Barbara's computer was destroyed. Replacing the power supply did not help, so I have moved my very small "travel laptop" to her desk and this seems to be working well enough. We would have bought a replacement computer if we could have found one that did not run Windows 8.
  • It blew out the HDMI output on my main computer and also the HDMI input on my huge monitor. I bought a cable that allows me to use alternate video on each device
  • I also had to replace an Ethernet switch, but this was cheap and easy compared with the other stuff.
  • And who knows what else. 

All I can say is that it is a good thing that we invested in that whole house lightening protector a few years ago.

My next project is pulling the stumps from a large area of the land I bought two years ago. I tried pulling a couple of the small ones with our tractor and backhoe, but this in insufficient for even relatively small stumps. I have therefor arranged to rent a full size excavator for my next chemo break week. Here is a photo:

When I was a kid, I always liked to play in the dirt. This could be the chance I have always wanted. I have no idea how long it will take to get these stumps out - hopefully only a day or two. I will then be able to play around with moving rocks and clearing some roads into the property. I am really looking forward to this. I am also hoping to have time to help some neighbors with a couple or projects they have. I will let you know how this goes. 

Tuesday, July 29, 2014

First Cycle of Clinical Trial

Last week, we completed the first cycle of the "Clinical Trial". Mostly, this is the same chemo we tried during the first regimen, but with the addition of a new drug called Panopinostat. Apparently, this has shown good results, but is not yet clinically approved. The goal is still to get me to Stem Cell Transplant.

The results after the first cycle were reasonable - about like when the results from the first regimen, though this time we are starting from lower marker levels. What matters most here is not how fast we drive the numbers down, but rather that they stay down at the end long enough to make the Transplant happen. We won't know this until the end of the regimen.

Meanwhile, I continue to feel pretty good. It is interesting that everyone seems to think that the chemo will wipe me out, but the reality is that I usually feel better during the actual chemo and I can get more tired during the "rest periods". I think it is because the chemo includes a drug called Dexamethasone (Dex) which is a corticosteroid. I think this is the drug that induces "motor mouth syndrome" and cuts down the brain to mouth barrier. For me, it feels like a sort of caffeine high. I am not sure how Barbara feels about it.

My side effects during the first cycle were minimal. I did get some rather unpleasant lower leg and foot cramps which affected my sleeping for a few nights, but they did not last too long. The funniest side effect was hiccups which occurred during the first cycle. These lasted for hours after dinner on both chemo days of the first week. Fortunately they were fairly gentle hiccups and went away as soon as I rolled over to go to sleep.

Last Friday, we had friends visiting, so we went to Battleship Cove for the day. Unfortunately, it was "Free Friday" which meant that 75 or 80% of all the children in eastern Mass were there running around, screaming, and blocking passageways. Maybe this is like the confusion of combat.

I was totally wiped out on Saturday - whether it was from all the activity the day before or because of the chemo or because of it not being a "Dex Day". Who knows? I ended up taking a total of four naps during the day Saturday. In contrast, Sunday, I was quite lively  and felt great all day.

I was all set to publish this last night, but ran into a slight problem. Lightening struck very close to our house and took the power out. My first thought was "Glad we have that generator".  But apparently, it took the generator out too. Also, the phone and internet. And my large computer monitor. And also Barbara's computer. And probably a lot of other stuff too that we have not found yet. We just drove down to Fox Hill Village and are getting ready for another week of chemo, but this will give us projects to look forward to when we get back to New Hampshire.

Friday, July 4, 2014

Happy Independence Day

Happy Rainy 4th of July.

We did not plan to be here at Fox Hill Village today. We had an appointment at Dana Farber yesterday (late) and our plan was to come back to FHV for dinner and get an early start back to NH in the morning. This was not to be.

The Clinical Study people decided that since DFCI was closed on Friday, we have to go in on Saturday. Fortunately, we have a very early appointment (7:30 UGHhhh). They will give me a series of 3 EKGs over 10 minutes, then feed me my Panobinostat, wait 3 hours and then give me another 3 EKGs. Then we get to drive to NH. Fortunately, traffic should not be too bad.

Then we will return for more appointments on Monday.

New Hampshire is really beautiful at this time of year. At least that's what they tell us. Hopefully, we will be able to spend more time there after next week.

I should not complain. The doctor we had in Hookset was very good, but we really like the Dana Farber doctors a LOT better - mostly because they tell us that I can have wine with dinner even with the chemo. This is clearly a superior protocol.

I think this is our longest single stay at Fox Hill Village so far. My little garden area is doing well. This morning (before the rain started), I went out, did some weeding and harvested some arugula, lettuce and three giant turnips.

The good part about being here is that FHV put on a great July 4 lobster feast which Barbara and I enjoyed greatly. And we did not have to step foot outside in the rain to enjoy it. 

Tuesday, July 1, 2014

I passed !

You may recall from my last post that my getting into my clinical trial rested on my "neutrophils" numbers not being high enough.. During my first try last week I flunked, but it was sort of a "D+", so they figured that if I did some exercise and got my heart rate up, that maybe I could get that up to a "C-" or so - jut enough to pass. So I ran up and down stairs for 20 minutes and they redrew the blood for the test and I just barely passed.

But I still had to pass on Monday (yesterday). The nurse in charge of the clinical trial said that she was "very concerned".

Being a "belts and suspenders" kind of guy, I started working on this on Sunday. I did a fast mile and a half walk. Then, yesterday morning, I got up early and went to the gym at FHV where I did a workout. When we got to DFCI, they told us the wait for the blood tests could be as much as a half hour. The problem is that I wanted to get the blood drawn immediately after exercising so I got them to give me the best estimate possible. I then ran up and down 15 flights of stairs, timing myself to get back just a couple minutes before the test. During that 4 minute wait, I stood in the waiting room doing deep knee bends and leg raises. Note that there were about 50 people in the waiting room watching me, but nobody paid any attention; they are used to seeing everything in that waiting room.

Anyway, I passed the test with about a 50% margin. HOORAY !!

So they gave me a whole bunch of drugs yesterday - including Dexamethasone which is my favorite It reduces inflammation (and discomfort) and also makes me more lively. It is sort of like a super caffeine high. This is great for me, but a bit tough on Barbara.

The best part of this is that we are now close to a schedule that should go for several months. It is good to be able to plan and schedule things. This chemo runs in 21 day cycles with two weeks of chemo followed by one week of "rest". We will probably come to Fox Hill for a few days during the chemo weeks and then stay in NH on "rest" weeks.

The next challenge is a special EKG. The clinical trial protocol calls for a series of 3 EKGs immediately before taking the Panobinostat followed by a three hour wait and then 3 more EKSs. This is to be done on my first and third ingestions. The problem is that DFCI is closed on Friday when I should take my third Panobinostat. They are talking about having us come in on Saturday which we are not really thrilled about. I have explained to them that I am an engineer and that if they lend us the machine, we will obtain the needed EKGs on Friday. Anyone taking bets as to how this will go over?  We have also offered a couple of other suggestions. Should be interesting. 

Saturday, June 28, 2014


The latest news is that my oncologists want to try a clinical trial that includes a new - not yet approved - drug called Panobinistat. With luck - a good bit of luck - this will start on Monday. The plan is to give me RVD therapy, which is the "standard of care" for MM and add the Panobinistat on top of that.

The challenge is that one of my numbers is right on the edge of being high enough to qualify for the trial, They ran me through some tests last week and I was just under the threshold to qualify. They came up with the idea of having me eat and exercise just before taking the blood for the test. So, they arranged for a nurse they knew to draw the blood immediately after I had done some sort of a workout. So, Barbara and I had lunch and then we spent about 20 minutes running up and down stairs. Well - to be honest, I only ran for the first couple of minutes and after that I sort of dragged. Barbara ran with me - to give me moral support, but mostly it drove home how out of shape I am.  I then registered for the test and they brought me into an infusion room where the nurse would do the blood draw. After 5 minutes, I got concerned that I was not fresh enough from my workout, so I started doing keep knee bends and leg raises to keep my heart rate up. I got a lot of funny looks; apparently, it is unusual to see people exercising in infusion rooms. Fortunately, I passed the test, but just barely.

I have got to do this again Monday morning - the blood test - not the EKG. Wish me luck.

The other bit of news is that last week when they checked my "vitals", I asked them to also measure my height. They normally do this only the first visit, because this never changes, right? WRONG. It turns out that I am now only 5'8" tall - which is 2 inches shorter than I was last fall and 4 inches shorter than when I was at my peak. This did not seem to particularly concern anyone besides me. Actually, I don't feel any different in my perspective of the world, but I am thinking of getting elevator shoes.

If this keeps up, I will end up looking like one of those cartoon characters that has been crushed by a giant weight and is now only 8" tall and walks around looking like a hat with feet under it. My next drivers license photo will probably include my belt. I have started telling people that I used to be "tall, dark and handsome", but that now I am only "dark and handsome".  

Wednesday, June 18, 2014

Stem Cell Transplant Cancelled

I was supposed to be starting "mobilization" for my stem cell transplant this week. Unfortunately, yesterday (Tuesday), they informed me that this could not proceed. Apparently, even though most of my numbers were very good, there were a couple that indicated that my cancer was still too active. This indicates that while the protocol I was on was working, it was not working quite well enough. They did not seem to think that a few more cycles of this protocol would make any difference.

In other words, my cancer is responding to the treatment, but it is not going into remission as hoped. The good news is that there does not seem to have been much if any deterioration of my bones since the last bone scan in January and, as I said above, most of my numbers look very good.

So - it appears that the next thing to try is a "clinical trial". We are currently looking at three different ones and we'll probably select one of these next week.

There is also a good chance that we will also try the kyphoplasty to "buck up" my spine and hopefully get rid of some relatively minor discomfort in my back. We had considered doing this back in March, but did not want to get in the way of the chemo or radiation therapy I was getting. This summer might be a better time for this.

Meanwhile, I continue to feel pretty good. While there are a few days when I am very tired, there are other days when I have a lot of energy and get quite a bit done.

Last weekend, we went to Barbara's 50th high school reunion. Barbara and a real blast and it was fun for me as well. I was amazed at how young and active everyone looked. Then I realized that we are used to the people at Fox Hill Village where the average age is about 15 years older. Of course Barbara's classmates looked young by comparison. 

Friday, May 30, 2014

Ready for SST ?

On Wednesday, we met with the Dana-Farber Oncologists. They went over the lab results - which continue to look very good and they have decided that it is time for my stem cell transplant (SST). The only problem is scheduling. They do not want a gap between the end of chemotherapy and Stem Cell Harvest, because they don't want to give the cancer any more time than necessary to recover prior to harvesting stem cells.

So - on Thursday, I called the scheduling nurse to coordinate. She told me that it could be August before they can fit me into their schedule and that this would not be a problem since they could simply continue the chemo while I am waiting for a slot. You can imagine how thrilled I was with the opportunity for three rounds (9 weeks) of unnecessary chemo. I asked her to please make sure that this was OK with the oncologists.

This morning (Friday), I received an email from a different scheduling nurse setting up a whole bunch of pre-transplant tests in about a week, so I called her. She gave me the impression that the other nurse had had a change of heart as to when I would get the transplant (after checking with the oncologists?). So possibly, I will be starting the transplant process sooner rather than later. Apparently, they want to surprise me.

The scheduling nurse who told me that I might get my transplant in August is apparently not in today, so I will hopefully find out more on Monday. Either way, all the news at this point is good. At least they are highly encouraged by the numbers.

Meanwhile, Barbara and I have been in Westwood for the last few days. When people "leave" Fox Hill Village, they are typically not in a position to take their furniture with them. Some is taken by relatives, but other furniture is donated to FHV and placed in a basement storage area where residents can purchase it - sort of like a continuing yard sale. Barbara watches this area carefully and recently discovered a very nice dining room set - which has now been purchased and moved into our apartment. Our place actually now looks lived in. I am not completely without sin in this regard because I found a very nice marble topped coffee table which is now in front of the couch in my office.

Meanwhile, I continue to feel pretty good and apparently, I look pretty good as well. A friend who just returned from Florida told me that I did not look nearly as bad as he expected me to. So I guess that is more good news. 

Tuesday, May 13, 2014

Spending time in the Workshop

We are just wrapping up "Chemo Round 5" of this regimen and I am once again on a "break week" which means that we only had to go to Hookset once this week. It also means that we are spending the week in Meredith rather than doing our usual Meredith to Westwood on Monday and Westwood to Meredith on Thursday - both with chemo stops in Hookset. We plan to do that for the next couple of weeks.

We met with the Hookset oncologist yesterday and he says I am doing very well. Side effects of the chemo are minimal and the numbers look good. As of now, the current plan is for me to get three more cycles (3 weeks each) of chemo and then to stop the chemo to see if I have managed to get myself into remission. Alternatively, if the numbers stabilize, they might skip the last cycle or two. Meanwhile, Cycle 6 will start this coming Monday. I can hardly wait.

In the meantime, I am happy to report that I am feeling pretty good - a bit better than at the same point in the last cycle. I still can't lift everything that tempts me, and my back is a bit stiff, but I did spend some time on the tractor a couple of days ago. I can turn around and look behind me and that is a big improvement. I have also been spending a fair amount of time in my workshop. I finished the desk I was building for use at Fox Hill Village and we brought it down to FHV during our last visit. It is great to have a reasonable place to sit and work at the computer. Here is a picture of the desk

I also have a garden plot - OOPS - we are NOT supposed to call them "plots". I meant "garden bed". It is about 4 x 15 feet and I have managed to plant a few rows of lettuce, chard, beets and turnips. Almost everyone else is planting flowers. I hope the veggies don't feel out of place. I understand that rabbits get into the garden area and eat everything anyway. I am also hoping to plant a garden area here in Meredith as well.

We also now have a pet duck. Well - sort of. Last year, a mother duck set up a nest in our bushes and eventually managed to hatch 4 little ducklings. Today we noticed that she is back, having set up her nest under a bush in our front yard. There were 11 eggs in there today.

Meanwhile, Barbara has hired a decorator for FHV. He and his assistant came up to Meredith to "see how we live" and to get ideas of what we might like at Fox Hill Village. Barbara seems to have this well under control and I try to do my part by staying out of the way.

There is one other thing to celebrate: The fact that I can celebrate. Yes - that's right. I can have a glass of wine with dinner this week if I want, since I am not on chemo (after Monday). So, the question is,
How shall I celebrate?" I know - I think I will have a glass of wine!!!

Saturday, April 26, 2014

Staying the Course

It has been a few weeks since the last posting and I thought I would update the blog to let you all know what is happening.

The snow is almost completely gone and the lake is free of ice. Last week, our friend Jerry managed to gather up 23 gallons of maple sap for us and I am boiling it down now. We should get  a couple more quarts of syrup, but that will be the last of it. Then it will be time to clean up the mess all this has made.

Mostly, I am feeling pretty good lately - especially my back and ribs - which probably means that the bones are healing a bit. I am still not allowed to lift heavy things which is frustrating, and I am not yet chainsaw certified, but this is progress. I have many small side-effects from the chemo, but none are too bad and they are too numerous and boring to detail. I do get tired easily and seem to need lots of sleep. My "brain to mouth barrier" (never strong to begin with) continues to weaken. Also, I am VERY sensitive to the sun. I burn easily; it takes a long time to heal and does not turn into a tan. And this is April. July should be interesting.

I am on a "break week" from chemo which means that I only had chemo on Monday this week. We had a meeting with the Dana Farber oncologists on Wednesday. This included another complete set of blood tests - even though I had had a set with my Hookset oncologist on Monday. Fortunately, all the numbers looked pretty good - including the IGg which is the one that has been giving us trouble, so that is good news. The plan is to continue with chemo cycles - which means two weeks of chemo followed by a break week. For us this translates to two weeks where we spend Monday afternoon to Thursday morning at "Fox Hill Village" in Westwood with stops for chemo in Hookset on the way from Meredith and back. On the "rest week" we have chemo only on Monday, so we will most likely return to Meredith and skip Westwood on that week.

Fox Hill Village is interesting. They have a group picture puzzle set up on each floor. I already got chastised for "being too good at puzzle making". Barbara is starting a Mah Jongg group. She has also hired a designer/decorator for the apartment. I don't see the point. We already have a TV, a bed and Internet access. What more do we need? Perhaps men are not meant to understand these things.

One really good bit of news: I asked my oncologist if it would be OK for me to have a glass of wine on days when I am not getting chemo. He did not see any problem as long as I do not drink on chemo days or the day before or the day after. You can imagine how excited I was to hear that. But when I worked out my actual drinking days, it comes to 4 days during every 21 day cycle. Hey - its better than nothing. I prefer to think of the glass (or in this case, the "wine glass") as being "half full" rather than "half empty". . 

Thursday, April 10, 2014

Sugaring Continues

Barbara and I are back in Meredith after a few days at "Fox Down Abbey". We had two rounds of chemo in Hookset this week - one on Monday and then again today on the way back. This is what we expect will the pattern for a while. In general we have two "chemo" weeks followed by one "rest" week. During each "chemo week" we will have chemo on Monday and Thursday - and go to Westwood for the days in between. On "rest weeks", we will go to Hookset on Monday and then come back to Meredith. This week and next week are chemo weeks.

So far, the numbers from the blood tests look pretty good, so it seems like the myeloma is responding to the chemo - at least for the time being. At this point, this is all we can ask for. In a couple or few months, they will see what happens if they stop the chemo. If the disease has been driven into "remission", the numbers will stay good for a while even without the chemo. If this happens, they will do an autologous stem cell transplant. That is what the doctors are "keeping their fingers crossed" for. Us too.

Meanwhile, Barbara and I have been talking to designer / decorators for the place in Westwood. We are still pretty much camping there, but yesterday marked a transition when we had a proper bed delivered. The sleeper sofa that we had purchased for the unit was quite comfortable, but the bed is better. So, we now have a couch, a bed and a 65" 3D TV connected to the Internet. What else could we ask for?

Meanwhile, I have been feeling pretty good. I am still a member of Meredith's Zoning Board of Adjustment and attended the monthly meeting tonight. I am spending time in the workshop building a desk for use in Westwood, but I have a long way to go on that. But most important is that it is Sugaring Season here in New Hampshire. Anyone in the area will tell you that this is very high priority.

To understand what home sugaring is all about, I recommend listening to Funny Sugaring Poem. It is 13 minutes long, but really funny.

Fortunately, I am happy to report that my Maple Syrup Evaporator Invention has been working quite well. Barbara says it looks like something that Rube Goldberg would come up with if he were trying to cook soup in a toilet. But I don't care - it works extremely well. I plan to share the design with other Maple Syrup makers and I have posted a detailed description at Maple Syrup Evaporator.  Here is a photo. When the sap level gets low, the copper ball drops down and pulls down on the lever. The lever lifts up on a switch (that you can barely see in the photo) and turns on power to the gray outlet box. To the right of the photo (not shown), there is a sap bucket with a small pump in it. The pump is plugged into the outlet box, so it pumps sap through the light green tube into the sap boiler until the ball floats up and turns the switch and pump off.

There is still quite a bit of snow in the woods and I have needed a bit of help in hauling the sap out of there. My friend Jerry has been great about going up there and bringing the sap out. Barbara has also gone in there with me and hauled sap out. When I go up to the "Sugarbush", I have to wear snow shoes to keep from punching through the deep snow and I have to limit what I carry to a few gallons at a time. I think sugaring season might be almost done and it looks like we will end up with about a gallon and a half of syrup - which means we will have had to haul and boil off about 60+ gallons of sap.

So that is the summary of how things are going here. We are tired from all the driving, but we are holding up well enough and we are certainly ready for Spring.

Thursday, March 20, 2014

Spring Arrives!

Spring arrived today. You can tell by looking out our kitchen window and noting that there is only about a foot and a half of snow on our back deck.

I have to apologize for not updating the blog sooner, but it is the fault of my brother and his family. Well - anyway - that is my excuse and I am sticking to it. They came up for a visit for a few days last week and I was enjoying their visit so much that I could not tear myself away from their company long enough to work on the blog. So, it wasn't my fault.

Of course, they left five days ago, but I was tired from their visit and the radiation treatment. Anyway, I am working on it now - better late than never.

My radiation therapy finished up last Friday. That was 10 workdays in a row of Barbara driving me to Concord (1 hr each way) for about 10 seconds of radiation each trip. For the most part the radiation itself was quite painless, but I  got very tired after some of the treatments - and not at all after others. I have no idea why. The say the tiredness continues for two to six weeks after the end of the treatment. I was very tired yesterday, but OK today.

The other side effect was a sore esophagus. Really. The radiation apparently causes something like a sunburn there, so swallowing has been a bit of an issue. I have had to take really small bites totally chewed and eaten very slowly. Hot or cold was also a problem. One morning it took me a full half hour to eat a bowl of cereal. This seems to be pretty much over with now, but for a few days, I would also hiccup after each swallow. It really wasn't that bad in the grand scheme of things.  Try to think of it as a comedy skit where the guy does a hiccup after each bite.

They did not do the khphoplasty as planned during the radiation cycle. (The procedure where the inject cement into my back.)  During the radiation, I got a very bad cold along with some small infections on my hand, so they decided to delay the kyphoplasty. There is some chance that the radiation will help enough that the kyphoplasty will not be needed - at least not soon - and there does not seem to be any hurry on this.

Which brings us to the status of my chemotherapy. You may recall that the first regime that they tried on me last fall did not bring the cancer into remission, so they are trying an alternate approach. After the first cycle on the alternate approach one of the key indicators was way down indicating that the new approach was working very well. This was great and very welcome news. I then completed another cycle and then took a short break for the radiation therapy. After this second cycle (last Monday), the key indicator (Igg) was up slightly - while they were hoping that it would go down more. This is not good. However, the lead oncologist is still hopeful that the current regime will work if given a few more cycles. He noted that all my other numbers are still very good and that they had reduced some of the dosages during the second cycle due to my white blood cell count. Going forward, they will use a different technique to manage white blood cell levels. So we will keep our fingers crossed that the current regime will work if given a chance.

Barbara continues to be my "Rock of Gibraltar" through all this - insisting on going with me to all treatments and doctor visits and generally helping me with all the things that I have trouble doing since the onset of my disease. It used to be that I was the one to lift anything heavy and now that I am not allowed to do so, I have to ask her to lift anything over about 20 pounds. It is very easy in all this to forget that the disease victim is not the only one who suffers from the disease; it totally changes the life of the spouse as well.

Meanwhile - on the non-Cancer front, we spent the last few days in Westwood (at "Foxdown Abbey"). We are far from moved in there, since we have very little in the way of actual furniture. On Wednesday, we met with to a designer. We are still trying to learn our way around, but so far, we really like it there. Everyone is really nice and the food is good - which is important to me - even if it did make me hiccup.

And here in New Hampshire, my friend Jerry helped me tap some maple trees on my land last week and my brother and his family helped me tap some more when they were here. We now have about 15 gallons of sap which I am hoping to start boiling down tomorrow, I have invented a special maple sap evaporator system which I need to finish building. I have not tested it, but I am certain that it will all work flawlessly the first time I try it. I will tell you more about this in a later posting if it does not burn down my workshop.   

Monday, March 3, 2014

A Very Busy Weekend

Things have been VERY busy this weekend - starting with last Thursday. I will try to give you a quick update.

Last Thursday we went had two doctor's appointments. The first was the normal (twice a week) chemo visit to the oncologist in Hookset. After that, we met with another doctor at the hospital in Manchester. This second doctor does something called  Kyphoplasty. I have three vertebrae that are badly collapsed - and possibly collapsing more. In this procedure, they drill little holes into the vertebrae and insert tiny balloons in there which they somehow inflate to expand the bone back to something closer to its original shape. They then inject some sort of quick hardening cement to make the repair permanent. I know it sounds kind of gross, but apparently, they do this all the time and it is low risk and highly effective. Anyway, that was our first consulting visit with this doctor. He recommends going ahead with the procedure this Friday.

From there, we drove to Boston and stayed over Thursday night with friends. On Friday, we arrived at our new pied a terre at Fox Hill Village in Westwood. What a hectic day - but everything came together beautifully.

First of all, we have zero furniture for the apartment. However, we had ordered a very nice sleeper sofa from Bloomingdales and miracle of miracles they had delivered it that morning just before we arrived. Fox Hill also has a sort of furniture exchange area and we found a chair and love seat there which we purchased for small money on the spot. The Fox Hill guys delivered that to the apartment within a few minutes of the purchase. So we now have some actual furniture.

We also managed to get checked out and get keys to use the Fitness Center and the Wood Shop and get keys to our mailbox. All of that took an hour or so, but it is good to have all that stuff out of the way.

Barbara and I then hauled our truck full of items to the unit - which took us about an hour. This was things like towels and sheets and suitcases with a few basics.

The next most vital thing of course is internet access. I had purchased a cable modem as well as a router and Comcast had sent a "self install kit" for the TV part of our service. With some considerable effort - including a support call, I managed to get the cable modem going. After that, electricians came and ran a wire to the place where I wanted our router. It now all works great. We needed to be able to watch Netflix.

So, we have now been here for three days and will be leaving tomorrow. The sleeper sofa is very comfortable. We have met a number of very nice people and it seems like we will like it here a great deal. So far, all indications are positive.

Now on to the latest medical news. Well - actually - the news we have has to do with treatment plans rather than with any particular results. I will be very busy over the next two weeks. Actually, Monday (today) was supposed to be the first day of my "rest week" from my chemo. Instead, I will be getting two weeks of "rest" during which time I will get radiation therapy. According to the schedule, chemo will start up again on March 17.

So, later this morning, we will drive from Westwood up to Concord for the first of what will be 10 weekdays of radiation therapy on my spine. We are told that each treatment will take just a few minutes - but unfortunately, this needs to be done in Concord, so it will be 2 - 3 hours per day. As far as side effects go, they should not be too bad. Mostly, I might feel very tired. It won't even make me glow in the dark.

Then on Friday, after my radiation therapy in Concord, we will drive to Manchester where I will get my Kyphoplasty procedure. This will be done under general anesthesia. They expect to send me home at the end of the day.

Actually, I am thinking that since this Kyphoplasty procedure involves injecting some sort of quick hardening cement into the spine, perhaps I should call the guys at Laconia Sand and Gravel to see if they can do it. They would probably charge less and it would save us a drive to Manchester. 

Saturday, February 22, 2014

My First Tattoo

Friday (yesterday) was a pretty busy day. In the morning, we met to a Radiological Oncologist in Concord Hospital. In the afternoon, we went to Hookset for an infusion. And I got a tattoo. Well - actually three tattoos, but more about that later.

From reading the blogs, you probably know that I still have some discomfort in my back. It is not that it hurts all that much, but it does prevent me from doing a lot of the things I would like to be doing - mostly because I am afraid of causing greater injury. I had MRIs on Oct 24 and Feb 10 that showed deterioration between the two images. BUT - the question is: "When did the deterioration occur?" The first image was two weeks before I even started chemo, so that would be expected. On the other hand if my spine is continuing to degrade - well that is not good. I would hate to end up being "spine-less".

So, we wanted to see what the Radiological Oncologist had to say. And what did we think he would say? As a great man once said, "If you go to a barber, expect to get a haircut." So, not surprisingly, this doctor told us that I could benefit greatly by getting the radiation treatment.

To be more specific, he said that Multiple Myeloma responds extremely well to radiation therapy. He said that he can effectively wipe the cancer out of my vertebrae thus stopping the disease there.  Now, I want to check this with some other doctors, but that sounds good to me - especially, since most of the stuff I really enjoy doing requires a backbone that works.

The clincher for me was that he said I would get to have a tattoo. This was to be my first tattoo and I was pretty excited. My first thought was some sort of buxom biker chick, but I quickly dropped that idea without even mentioning it to Barbara. Then I thought of some sort of sailing ship across my chest - maybe a clipper ship. I expected them to come out with a book of samples for me to choose from.

Alas - they had something less impressive in mind. More like a dot than a ship. Well - actually three dots that they can use for positioning me under the radiation machine. So, my tattoo is not quite as large as what I would have chosen - more like the size of a period.  A small period. But I am still mighty proud of it.

We also had pretty good luck in Hookset. Apparently, those shots I have been giving myself worked pretty well in spite of the fact that there was no actual vodka involved. My white blood counts were back up high enough for to get my dose of cytoxan - along with some velcade. So that was a relief to me.

And today (Saturday) was warm (45) and sunny, so I spent three hours in my workshop installing my new heater. I made great progress today and if things continue to go well, I should have heat source in there by early summer.  

Tuesday, February 18, 2014

Doing Shots

I realized this morning that I have been a bit remiss in my blogging, so here is an update. Actually, there are several little things to report - none of which (hopefully) is of major consequence.

I am happy to report that I continue to feel pretty good with only minimal discomfort. But then I always feel pretty good on days when I take Dexamethasone. Better living through chemistry.

Last week I finished my first complete round of the new chemo regime. I am getting this chemo in Hookset NH which is 65 minutes away from our home, so that is a bit easier than going to Boston for treatment.

BUT - we went to Dana Farber last Wednesday for a visit to the head MM oncologist and lots of blood tests. (The "exsanguinator" removed 14 vials.) And the results were very good. Apparently, I responded extremely well to this particular chemo cocktail and the doctors seemed very excited. Now, to be clear, this does not necessarily mean that the chemo will put the cancer into remission - only that it knocked out a bunch of the "bad guys". It could have left a few "really bad guys" who will now become more prevalent. Still, this is a very pleasing result and the doctors are hopeful that this chemo approach will get me into remission enough for them to do an autologous stem cell transplant.

Also last week, I spent an hour and a half in an MRI machine so that they could take another look at my spine. They wanted to compare this with the one they did at the end of October. They did find additional spinal deterioration which is not good, but it might not be all that bad either. This could have happened soon after the first MRI - which would have been before I even started chemo. This would not be unexpected. On the other hand, if it happened last week, it would be bad news, and there is no way to tell. My personal assessment is that since my back feels as good as it has since my diagnosis, they are seeing old damage.

Even so, they want me to talk to someone about possibly getting radiation treatment to knock the myeloma blobs ("blob" is not an official medical term) out of the bones in my spine so we will meet with this guy on Friday. I will let you know what he says.

My brother is visiting and he took me to Hookset yesterday for "Day 1 Chemo" of round 2. I got the Velcade, but the doctor there said that my white blood count was too low for me to get the Cytoxan. Again, this is not great, but probably not a disaster either. The doctor hopes that by giving me something to stimulate white cell production, we can get get the white cells up high enough for the cytoxan by Friday. He told me I would be giving myself shots of Nuepogen.

You may be aware that I have been avoiding booze since I started the first chemo back in November or so, so I was quite happy with the idea getting to do some shots. Unfortunately the nurse showed up with a hypodermic said it was today's shot of Neupogen. Apparently there is no vodka involved. They expected me to stick a needle into myself. Well, I did manage it yesterday. It is nice to know that there actually is a use for that roll of flab that I have been carrying around my middle for the last 20 years. ("Flab" is not an official medical term.)

Sunday, February 9, 2014

Nothing new to report

There really isn't much new to report, but I guess that in itself is worth reporting. Also, it has been a while since I have written anything.

I am almost two weeks into the new chemo regimen they are trying on me. This is very similar to the last one. With the old one, I was taking Decadron(Desametasone), Velcade(borteezomib) and Revlimid (lenolidomide). With the new sequence, they have replaced the Revlimid with two other drugs: Cytoxan  (cyclophosphamide) and Pomalyst. No idea yet if or how well this is working or even when we will know. I am also still taking Zometa to promote bone healing.

The good news is that in spite of the drugs (or more likely because of them), I have been feeling pretty good for the last couple of weeks. While I get very tired very easily, my mobility has been better. Last week, with help from Barbara, I was able to mount a large heater onto the ceiling of my workshop. I also spent an hour or so outside using the front-end loader on the tractor to move snow around the driveway. We have about two feet on the ground and the banks left by the plow guy were leaving not much space for actual cars in the driveway, so I made some adjustments.

We also had a fairly busy social schedule last week. We had people to dinner on Wednesday and Saturday and we went over to the home of friends on Friday. Saturday we attended "Martinis in the Snow" party (only in New Hampshire) held by other friends. This plus two trips to Hookset for chemo kept us pretty busy.

This coming week will also be pretty busy. On Monday, we will go to Manchester for an MRI. Tuesday, we are back in Hookset, NH for chemo (Cytoxin and Zometa). From there, we head to Boston to stay overnight before meeting on Wednesday with the Dana Farber doctors. We then get to go back to Meredith on Wednesday. My brother is coming up over the weekend and will stay for several days. We are planning to go to a play on Saturday night. That should be fun.

So far, side effects of the new chemo have not been too bad.  I have not yet lost my sense of taste, so I am still enjoying my food. I do get tired and besides sleeping for 8 hours a night, I have started taking a nap in the afternoon.

We are looking forward to closing on our Pied-a-Terre in Westwood at the end of the month. So far, we have ordered one piece of furniture for it. This will be nice sleeper couch that we can either sit or sleep on. It will be a bit sparse, but what else could we need?

So, that is all for now. I will report more when we know more.

Friday, January 24, 2014

A Significant Setback

You can't expect a cancer-blog to always be reporting good news and I am very sorry that today's report will not be humorous or presenting good progress.

On Wednesday (1/22), I went to Boston for a day of tests to confirm my readiness for stem cell harvest. I had been looking at this as a formality of sorts since I had been told that the therapy I have been getting ("RVD") was nearly 100% effective in bringing MM into remission. Unfortunately, I flunked the test. My MM may have been knocked back by "RVD", but it appears that the disease did not stay knocked down for long. In addition to bad blood chemistry, there has also been additional bone deterioration in my spine.

Needless to say, this is a fairly major setback.

The doctors did not sound all that dismayed by this news. (I think they are trained to never sound dismayed.) Their attitude was, "Well - this happens sometimes and there are other treatments we can try that are usually highly effective under these conditions." I am sure what they are telling us is factually true, but still this is a big disappointment. I had always figured we would get to the point where "RVD" would stop being effective, but I had hoped that time would be as much as 3 - 10 years in the future and that in the meantime, I would be able to hike and chop wood and ski and lead a pretty normal life.

This also means that I have been kicked off the Clinical Trial. The good news is that while I will keep my Dana Farber oncologists, I can get most of my chemo in Hookset, NH - which is one hour from Meredith. We are not sure what this means relative to the Westboro place (Foxdown Abbey), but we plan to go ahead with the purchase. Hookset is almost exactly half-way in between the two towns; perhaps we will still spend half time in each place.

On Wednesday and Thursday, I was pretty depressed about this development, but I am back to taking things one day at a time. This development probably means that my survival prospects are not as good as they had been, but dwelling on that will not help matters. I am trying to get the most out of each day.

At this point, I have been off of chemo for three weeks and the chemo side effects are pretty much gone. It is great to have my sense of taste back and to be able to enjoy my food for a while. It is also good to have my brain back to normal - for me that is. I had not realized how much I had been affected with "motor mouth syndrome" (Chemo Brain?).  A holiday card that I had sent came back as undeliverable and I could see from the address that I had had a lot of difficulty actually hand writing it.

On the other hand, I think that the cancer has been doing some additional bone damage as it has come back. I have a low-grade pain in my back that as been increasing over the last few weeks and another pain in the lower ribs on my right side. Neither is very bad and I am hoping to knock that down with chemo that starts next week. These get worse as the day goes on and they limit what and how much I can do physically. It does bother me a bit trying to sleep, since it hurts more when I am lying down than when I am sitting. The good news is that I can get a reasonably good night's sleep by carefully finding a position that is pain free. And I can do this without taking any medication. I really am quite content as long as I can do that.

So that is the summary of where things are. I am sorry I can't report more positive developments, but things are what they are and I promised to keep you informed, so there it is. I will let you know more as I know more. 

Tuesday, January 14, 2014

Mid-Break Report

I have been on break from Chemo for the past two weeks and I thought I would post a "mid break" update - even though there is not much new to report. I guess that's good news.

I am feeling pretty good and my energy level is better than is has been. A couple of days ago, I lit a fire in the wood-stove to heat up our detached garage/workshop and spent a couple of hours with my tractor partner putting chains on the tractor. He did most of the heavy lifting, but I was able to help a good bit and thus avoid feeling totally helpless.

As I have said previously, I have not suffered terrible side-effects from my chemo treatments for which I am grateful. But still, there have been a few. And as s a naturally curious person, these have been very interesting to me.

The most interesting side-effect has been the loss of part of my sense of taste - but only part. I have a lot of trouble tasting salt. I had no idea how important salt is to the taste of almost everything we eat. I first noticed it when I was having a slice of toast and butter. It sure looked good, but it tasted like toast and lard. I find myself looking at a luscious meal and thinking about how great it is going to taste. You don't forget what stuff should taste like and you really anticipate what it is going to taste like and the disappointment is amazing. When we go out to eat and the server asks, "How is everything?", I am thinking - "Why are you asking ME? How would I know?" But I just smile and say, "Great!". It is also difficult when I am cooking and the recipe says, "Season to taste". Like - how am I supposed to do that?

I'm not complaining, mind you. After two weeks, I think the sense of taste is slowly coming back. And most importantly, it never seemed to affect the taste of chocolate which was a huge relief. But we are beginning to run out of chocolate in the house.

Another thing I have started to enjoy again is wine. I had given this up completely so as not interfere with the chemo drugs. Now that I am on break, I have been having an occasional glass of wine with dinner. Too bad I can't taste it.  -  No - no - just kidding. I can taste the wine well enough. And this takes a big load off of Barbara who has been complaining for months about "having to drink for two".

We now have a signed Purchase and Sale Agreement for Fox Hill Village in Westwood, MA. Except that we have started to call it "Foxdown Abbey". We think that is pretty funny, but we are not sure how the the people in the Abbey - I mean Village - will take it.

I should mention another side effect that does not seem to be going away. I think I mentioned in a previous blog that one of the drugs makes people talk more than normal. And since I normally talk more than just about anyone else, you can only imagine what it is doing to me. One faithful reader has suggested that the name of the blog, Warren MM Blog might in fact stand for Warren's Motor Mouth Blog. It also affects my writing (as you can tell by the length of this posting). And worst of all, it seems to lower the "Brain to Mouth Barrier" which, in my case, was never as high as it should have been to begin with. You can only imagine what my poor, long-suffering wife is having to go through.

So I had better stop writing now before I say something that I really shouldn't.

Next week, I go down to Boston for a full day of tests - which should be lots of fun. I will try to post a report on how that goes. 

Wednesday, January 1, 2014

A New Year Begins

Happy New Year everyone. It is interesting the way the dates are working out for me and the way they are lining up with the calendar. Yesterday was the end of my first three rounds of RVD (Chemo) therapy and the end of 2013. Today begins a new year and a new phase of my treatment. Well - actually, it begins a couple of months of "rest" from the RVD therapy which will start again on March first.

So, this means that I don't have to go to Dana Farber for three weeks. Nice as they are there, I can't say I will miss the place. When I do go the next time, it will be for a full day of tests and then I am off for another week. Then begins "stem cell harvest".

Stem Cell Harvest starts at the end of January. At that point, I make three trips to Dana Farber over a period of two weeks. Technically, this is "chemo therapy", but it is not to kill cancer cells. Rather it is to stimulate production of my own stem cells and prepare them for harvest. I have heard that the worst side effect of this could be boredom as I sit there for long periods waiting for the chemicals to do their thing. So I ordered a new Nexus 7 Tablet as a medical necessity. This was just the excuse I needed. It should arrive by the end of the week.

Meanwhile, I am feeling pretty good. My back still gets sore at the end of the day and I have trouble lifting things, but mostly I am doing pretty well. It will be interesting how I bear up as the chemo drugs wear off. I don't know if I will feel better or worse.

Some days are better than others - though none have been really bad - and I always wonder why they differ? If I have a day where I can do more or less than usual, I wonder whether it is the particular drugs that I took that morning (every day is different - I have a giant spreadsheet). Or is it my level of activity that day? Or because I lifted something that I should not have lifted that day? Or what I did the day before? Or how I positioned myself during the previous night's sleep? Or the phase of the moon? You just never know.

The one thing I can say is that I am slowly getting better over the long term. I now have no trouble doing things that were a real hassle a month ago. At the same time, there is a lot more progress necessary before I get back to doing everything I want to be able to do this summer. We'll cross our fingers and hope for the best.