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". . 

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.

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.   

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. 

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.  

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.)

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.