The Letter

February 16th

Yesterday I sent the following letter out to the members of my Rotary Club and to most of the people in my address book; about 100 or so people. Then our Mail Guy in our High School class of 1962 passed it along with my blessings.

I was somewhat torn about sending out a letter, I must admit. I want to be right up front about what is happening. I don't want people to be suddenly shocked and surprised at the end. However, I also don't want people to think I am hunting for sympathy or attention either. I would like to think that my writing will eventually be of some help to someone who is also dying. Still, it does seem rather "ego-centric" and I do feel a bit strange in putting it out there. What others think at this point shouldn't bother me, but .............

The reason I haven't publicly announced this blog yet, is partly because of the above, but it is also because I hope I can be open about my feelings here, without anyone asking me "why" I feel a certain way or question my spiritual beliefs.

I know many, most of the people I have contact with are Christians, many are secular or CINO's (Christian in name only). I consider myself a Buddhist, if not religiously then philosophically. Certainly not a good one, but that is where my mind and my heart go. I won't go into it now, perhaps later, but the notion of a god outside of us and palpable upon our "ascension", just doesn't ring true to me. The precepts in all religions are generally universal, sort of like the Golden Rule. So the paths to the top of the mountain are all equally valid. Things start to fall apart when my religion is better than, the "only" way and has a long list of "should's and should nots". It seems to me that it is people who screw up religion. In Buddhism you are asked to think about what is right and wrong and do what is right. Sort of like our Four Way Test in Rotary: 1) Is it the truth? 2) Will it build goodwill and better friendships? 3) Is it fair to all concerned? 4) Is it beneficial to all? The weight and responsibility is on the individual.

The universal problem are those that rise to that level. I suppose that's why some religions have so many rules and threats hanging above the heads of their adherents. I know I am not perfect by anyone's measure, mine included, but I try.

Hmmm, this post has wandered a bit. Well, it is what it is. That is my most current motto, at least for now.

Dear Family and Friends,

As you know I have been dealing with Multiple Myeloma for the past few years. The first chemo treatment a year and a half ago knocked it down, but my numbers started going back up this last Spring. We tried the same treatment over the summer and into the Fall, but it wasn't effective. During that Spring evaluation a kidney biopsy detected amyloid protein in that organ. The amyloid protein is a rather "sticky" substance (as I understand this, Sid can do a better job at explaining it) and it is starting to plug up the filtering system, but not too significantly at this point in time. In November we started an IV chemo and while it has effected the MM numbers, my proteinuria (protein spillage) numbers actually increased, prompting more tests over the past few weeks. One of my recent symptoms has been breathlessness when I over exert myself. In looking at that with a cardiologist it was determined that the amyloid (Amyloidosis- AL) has been depositing itself in my heart, causing some thickening.

A visit to my oncologist a few weeks ago was upbeat and he said that he hadn't run out of "bullets". On our visit with him this past Monday, he was clearly discouraged, acknowledging that while the MM is being addressed, the treatments are not effecting the Amyloidosis. It appears that when amyloids appear in two major organs, stem cell replacement therapy is no longer an option. While he gave the go ahead to resume my current therapy, he suggested that we seek a second opinion from a more specialized center that focuses on Amyloidosis. That center happens to be in Boston. We are currently arranging for my records to be sent there. What happens after that, will they see me, will I be eligible for a clinical trial, is not known at this time.

With all of this, Peggy and I done a lot of talking and have decided that we need to make some important changes while I am in a position to do that. That change is that we are going to have to move; the home we have is going to simply make too many demands on her and as the disease proceeds I am likely not going to be able do anything to help her. While we are saddened about the decision, it is something that simply needs to be attended to.

We won't be making any sudden move, we have too much "stuff" to be able to that, but we need to begin the process. Our last move didn't involve enough of the downsizing and "getting rid of" that should have happened, so we will begin now.

No doubt you are wondering about how I am doing emotionally and I would like to assure that really I am fine in that respect. You want to talk to me about it, fine. I am seeing a counselor, I write about it and I am very grounded about end of life matters philosophically. We have no time-lines as to how long this may go on and, really, isn't that what we all have, even if we are in excellent health? We have today, the "now, all of us, nothing more. So don't worry about my future, or yours, let's enjoy living and make the most of what we have. Let's laugh and talk and enjoy getting together.