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.