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.