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:

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

Kitchen

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. 

Bowling

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"

Shoes

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.

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.

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.

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.