Thursday, October 31, 2013

This Blog Doesn't Work

I have been advised by a number of people that this blog does not work. Well - the blog itself works, but most people can't sign up for updates and people seem unable to leave comments.

People have asked me for what amounts to tech support on the blog. Sorry - I understand your frustration. In fact I share your frustration. But I will not be providing tech support. It is not how I want to spend my time.

Well - actually, this posting is tech support. But it will be the last tech support.

It seems there are two problems: Comments and Subscriptions.

I tried to leave my own comment and it asked me to select an account to "Comment As". Mostly I did not understand what they were asking me for. It worked when I selected "Comment as Anonymous", but if you choose this option, please include your name in the posting.

In the second case, I managed to leave the comment using my GMail account. In my case, this choice showed up as "Warren(Google)", so I assume this was as my GMail account, but I am not sure.  I don't know what you do if you don't have a gmail account. Maybe you are stuck using Anonymous, although there is at least one person who left a comment using some other system.

Regarding signing up for notification. I tried this today using a non-gmail account and it appears to have taken it. It sent me an email asking me to confirm the email address which I did. We'll see if I get a notification when I post this. Note that I think I tried this earlier today and it did not work.

So that is the end of the tech support on the blog. If you want to leave a comment and can't manage it, feel free to send me an email directly. If you try to sign up for support and it won't let you, feel free to send me another email letting me know and if I get enough of them, I will try to set up a mail list to tell you when there is a new posting.

But I really don't feel like doing tech support on

Now we will see if I get notified as to this posting. I will try to leave a comment on it as to whether or not I get notified.

I thought that computers were supposed to make our lives easier.


Wednesday, October 30, 2013

No worse than a bee-sting

Barbara and I headed down to Dana Farber again today - well to be more precise, we headed down yesterday afternoon and stayed in a hotel last night because we had an early morning appointment.

The appointment today was for additional tests - no treatment - just tests.

The first test was to draw some blood. As the tech was lining up the vials, I commented on the number of them. She said, "Yeah - there are quite a few. I fact I have to go into the next room to get some additional ones." It turns out that she filled 17 vials. I was very impressed. I was a bit concerned about the number of them, but then I realize that they all get filled from the same pin-prick so it does not really matter how many they fill - up to some limit I suppose. Barbara keeps asking me about exsanguination. Does anyone know what that means?

The other test was a bone-marrow biopsy. This did not sound like much fun at all. The worst part of is was that any time anyone at the clinic mentioned it, they kind of looked down and mumbled as if they did not want to discuss it. I was like freaking out. But - SURPRISE - it was no big deal. There were a couple of novocane shots. No big deal there. Then there was the part that involved what they refer to as "discomfort". Even that was no big deal. If anything, it was like a bee-sting. At the end, I was a bit disappointed that I had been so worried about such a minor thing.

So that was our day. Not very dramatic or exciting.

Our next event takes place next Wednesday when my treatment actually starts.

By the way - a couple of blog-housekeeping items. The main thing is that people have been having trouble leaving comments. It turns out that there should be a link at the bottom of each post that says either "No Comments" or provided the number of comments. I think that if you click that, you can leave a comment.

There is also an area to the right of the posting where it says, "Enter email below to be advised of new blog entries."

That is all for now. I will try to post next week once treatment starts.

Saturday, October 26, 2013

Don't come near me - I am radioactive!

Yup - I am radioactive. I was hoping that I would glow in the dark, but I checked last night and no such luck. Too bad - it would have been totally cool.

After they sprung me from Lakes Region General Hospital (LRGH)on Thursday, Barbara and I had to turn around and head to a full day of appointments at Dana Farber. They pulled a bunch of additional blood samples (I don't know what was wrong with the ones they got last week - or the many they gathered at LRGH earlier in the week.) They also did another complete "Whole Body Scan" - a set of about 18 X-Rays. They already had this; I think the x-ray lady gets a kick out of looking at pictures of my bones.

The main thing was that we signed up for the Clinical Trial. After waiting an hour and a half for our esteemed head oncologist (Dr Richardson) - and missing our lunch, we did have a good meeting with him. He also dashed off another whole set of prescriptions for me - none of them being for the treatment of the cancer itself. I am now taking so many pills with my meals that I don't have room in my stomach for any actual food.

The most interesting thing was that they pulled some blood and then mixed it with some radio-active isotope (Technetium-99) and then injected it back and put me onto some sort of scanner. I got to watch the display screen which looked to me like a whole bunch of totally random dots that kept changing. Apparently, the doctors can tell something from this.They gave me a card that explained why I was radioactive that I am supposed to carry around for the next three days in case I set off some sort of alarm, apparently so that I can convince the Homeland Security people that I am not in fact some sort of walking nuclear device.

The worst thing was this test where I had to breathe into some tube. Sounds easy, right? Guess again. There was this little old German woman telling me exactly when and how and when to breathe in a very strong German accent. She would say inhale, exhale, inhale, exhale exhale exhale exhale exhale. Then, as my skin began to go from white to pale to blue to green to some sort of pallid gray, she would say, "Now INHALE INHALE INHALE". And then she would say, "No - you did it wrong." And we would start over. Occasionally, at the end of a cycle, she would say, "Goot - That vas goot. Now do it again." And I would do the same exact thing again and she would say, "No No No - you did not do it right. You vill try again." I know the woman was just doing her job, but she came very close to ending up stuffed into the breathing chamber herself.

Anyway, it was a very long and very difficult day at the end of a very long and difficult week. But we are back in Meredith now and with any luck we won't have to go back to Dana Farber until next Wednesday. 

Thursday, October 24, 2013

Back from unexpected trip to LRGH

I just spent the last two days at Lakes Region General Hospital (LRGH) in Laconia.  Fortunately, it was nothing too serious although I did feel a lot like a pin cushion at the end of it.

In my last post, I mentioned that on Monday, we went to Hookset to get an infusion of a drug called Zumeta. The doctor warned us that one side effect could be a "slight fever". He said to call him if it got over 100.5. Well, it got to 103.7 and he told us to go to the ER.

When we got there, they figured it was probably some bacterial infection and they started pumping me full of some broad spectrum antibiotic. Also they put me on a saline drip because they said I was dehydrated and took a bunch of blood samples to see if I had anything weird growing in my blood.

As long as I was there as LRGH, my Dana Farber doctors decided that I should get an MRI of my spine. Turns out that LRGH shares one with two other hospitals. It is in a trailer that they haul around. Very convenient and apparently, it was a LRGH today so the stuffed me into the thing. I was in thre for close to an hour. They said, don't worry about it because we have headphones and music and you can listen to Mozart or a radio station. I chose the radio station, but accidentally told then to tune to a station that I rally can't stand. It didn't matter because once the machine started, I couldn't hear it anyway. Anyway, the good news is that the problem they were worried about in my spine had not occurred.

At the end of the day, they decided that I had no bacterial infection and my spine was OK. They gave me a bunch of drugs and sent me home.

Tomorrow, we have another appointment at Dana Farber. We were supposed to be there today, but the hospital visit slowed that down. 

Monday, October 21, 2013

Visit to the Bone Doctor

This morning, Barbara and I headed down to Hookset, NH to see Dr. Danny Simms. Dr Simms is an oncologist who specializes in bone problems.

The reason for this is that since my original back injury, I have been rather crippled up by back pain that does not seem to be getting better. I can sit at the computer or sit and read, but walking around can be uncomfortable. And forget lifting anything. So the doctors at Dana Farber recommended that we go see Dr. Simms.

There is nothing too exciting to report relative to this visit. He talked to us for a while and then looked at my X-Rays and Cat Scan. He then poked me a few times in lots of places and said, "Hmmmmm..".

Actually, he seemed very competent and knowledgeable and gave us a lot of helpful advise regarding exercise, diet, etc.

They then gave me an "infusion" of a bone strengthener called Zometa.They have a whole bunch of other names for it as well. I think this is so that if you learn the first name, they can start using some of the others to keep you confused.  It is a chemical that is supposed to slow down bone loss - mostly for little old ladies with osteoporosis.  Check it out at

Anyway, it should help my bones heal faster. Wish me luck. 

Wednesday, October 16, 2013

First Visit to Dana Farber

I guess you know by now that I have cancer or you would not be reading this. 

It all started about 3 1/2 weeks ago when I was hauling out our swim platform. I hurt my back - slightly. A few days later, while picking apples, it got really bad. After a week and a half, I went to my doctor and then, on Saturday, October 5, my doctor called and told me the news. Multiple Myeloma. The good news is that it is a highly treatable cancer and some people live with it for years. The bad news is that there is no cure. 

The time since then has been kind of a blur with two more trips to Boston, a whole bunch of X-Rays, a cat scan and on Tuesday, our first trip to Dana Farber Cancer Institute. My primary care doctor is very well connected and got us in to see Dr. Paul Richardson who is the clinical director for Multiple Myeloma at Dana Farber. We are confident that we are getting the best care available. 

We (Barbara and I) have been offered the chance to participate in a Clinical Study. We are inclined to accept, but want to discuss it with our Primary Care doctor first. He is away this week, but will be back on Monday. Note that the trial is VERY similar to what they call the "Standard of Care" for this disease, so it is not as if there is some chance that I will end up taking a placebo. The difference is mostly a slight deviation in the order of treatments. 

Whether we participate in the trial or not, the treatments will start off being relatively easy. It starts with a three drug cocktail called RVD. Two are oral and one is injected twice a week in Boston. I am told that my hair will not fall out - not that it would make all that much difference.  Then later, I will probably be subjected to a "Stem Cell Transplant" which promises to be less fun and have me in the hospital for three weeks. During this, what little hair I have WILL fall out. After that, they monitor me. 

So, that is the plan. Meanwhile, I am nursing my continuing bad back. I can mostly sit pretty comfortably and walk around, but I can't lift anything much heavier than a coffee cup (or a wine glass). They have also given me some pretty good drugs. We hope to see someone this week who will give me something to help my bones to heal and this too will help the back pain. 

So, that is our first update. More to follow.