To the Girls in my Life

This is really about daughters, Caryn, my wife Peggy, my granddaughters Camie, Sofia, Maicy and Leslie. Daughters are so much different than sons, I know, being a son. Daughters are caregivers, reminding sons that they need to stay in contact with their parents, of worrying over their Dads, taking care of their Mothers, taking care of their own children. Sons, well, more often than not, at least in my family, we tend to put off conversations, contact, telephone call, gifts, etc. I was that way with my Dad and I saw it with him and his family. Maybe it's genetic? At least in my family.

When I think about dying, like I was while not sleeping last night, and I run through my mind things that I should do before I head to the other side, I am saddest when I think of these "girls" in my life. Naturally I worry about my wife, but then again I know Caryn will be there for her. I think about my grandchildren (including Evan, my only boy) and how they are growing and changing, what I do miss in their lives now and what I will miss in the future. As much as I am grounded in accepting death, you can't help but thinking about these things.

Today I was getting ukulele tabs off of the internet, thinking about songs that I would like to learn, looking them up and printing them out. One of them was ABBA's, "Slipping Through My Fingers". Not finding tablature, I went on YouTube and played it. I cried as I sang along, tears just streaming down, voice quivering, my heart so sad. It's not the first time. The lyrics are just so true, and though it's clear it is a Mother singing about her little girl, it effects me as if I were the one singing it.

The other day, Caryn's three wee ones were over spending the day with us after spending the night. We also had our friends visiting us from the Okanogan. Doug is this awesome guitar player and he had been helping/encouraging me on my uke as I played (badly) with him. We came down below where the girls were and I was showing him some ukulele videos on the internet. Camie came over and asked me to play one by Taimane Gardner, "Grandpa", a Judd's cover. With her hanging on my shoulder and Taimane singing, "Grandpa, tell me about the good old days..." I started choking up and my eyes watering. As much as my philosophizing helps me confront and deal with dying on an intellectual plane, our emotional life is also a very real part of us, as it should be.

Men, as part of our make up, our genetics, the role models we have, our society, whatever, as a whole try to keep that part of ourselves in control and, too often, at bay. Still, I think that there is a deep longing and yearning to feel like we can let our emotions out. Certainly not all men; there are those "sensitive" males who are so much better in touch with their feelings, but the majority of us are further up on that sliding scale of "macho". The further up on the scale we are the worse off we probably are.

I think about my close male friends and there are few that, when we are together, enter into that slippery and dangerous swamp of our deepest emotions. I know that there have been so many times that I have wanted to talk about that part of me, but the banter, the avoidance, the shallow base side or the intellectual side of our minds and ego take over. Still, there are those times when I have been able to talk with a male friend and it has felt so good, but it will always stop before one of us loses control.

It seems as if I have gotten away from writing about those "girls" in my life. As I read the lyrics of "Slipping Through My Fingers", a lot of the words speak to losses that I can see in my life, time missed with my Mother, my wife, my daughter and my grandchildren. It hurts.

"ABBA - Slipping Through My Fingers"

Schoolbag in hand, she leaves home in the early morning
Waving goodbye with an absent-minded smile
I watch her go with a surge of that well-known sadness
And I have to sit down for a while
The feeling that I'm losing her forever
And without really entering her world
I'm glad whenever I can share her laughter
That funny little girl

Slipping through my fingers all the time
I try to capture every minute
The feeling in it
Slipping through my fingers all the time
Do I really see what's in her mind
Each time I think I'm close to knowing
She keeps on growing
Slipping through my fingers all the time

Sleep in our eyes, her and me at the breakfast table
Barely awake, I let precious time go by
Then when she's gone there's that odd melancholy feeling
And a sense of guilt I can't deny
What happened to the wonderful adventures?
The places I had planned for us to go?
(slipping through my fingers all the time)
Well, some of that we did, but most we didn't
And why I just dont know

Slipping through my fingers all the time
I try to capture every minute
The feeling in it,
Slipping through my fingers all the time
Do I really see whats in her mind
Each time I think I'm close to knowing
She keeps on growing
Slipping through my fingers all the time

Sometimes I wish that I could freeze the picture
And save it from the funny tricks of time
Slipping through my fingers...

Slipping through my fingers all the time

Schoolbag in hand she leaves home in the early morning
Waving goodbye with an absent-minded smile...

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.

February 11, 2012

This past week I had and MRI, full body, plus skull X-rays. I wonder if they'll find anything? NP Jeanie called and reported that the bone marrow biopsy was back and that the myeloma cell counts were down and that they would probably continue with the Velcade IV's. A good sign; the other options were to consider a different chemo approach or a bone marrow transplant. I will admit that that one frightens me. Maybe I don't know enough about it, but the idea of taking out enough of the replacement cells and then literally "killing" all of the remaining cells with "poison", the chemo, and then replacing the good cells that they harvested and propagated, seems... well, scary. What is your life in that interim period of absolutely no immunity and how long does it take to recover? If it was going to "buy" me months I don't think I would do it; years, well then I'd have to give it that consideration.

That brings up another question: who do you do this for? Do I do it for myself and make a decision that I am comfortable with? At this particular point in time, I feel it's OK to choose dying. Why? Because I have lived a good and worthwhile life; because it's best to go out at the top of your game rather than suffer the indignities of decline; because dying is normal and natural; because "clinging" and always wanting more is selfish; because it enables a constant sense of false hope in others rather allowing the change to happen.

The other side of the coin is that I should fight (cling) to life and do whatever I can to extend each moment that I can for my wife, my family, for my friends to lessen their pain and sense of loss. Though death is both inevitable and universal, it is a solitary trip when we undertake it. Letting go of those we love is difficult and painful. But isn't "letting go" also a sign of love? I can't take away the pain for the heart of others even though I might be able to postpone it; the pain will still arrive.

I have grandchildren that I am curious as to how their lives will develop. I wonder how my children will fare in the coming years. What might Peggy and I do if I am still here? Will the state of the world continue to get crazier? There are so many questions that my curiosity would like answered, but where does that end?

I feel comfortable with the idea of dying, at least that is what I tell myself. I intellectualize and I rationalize; I philosophize and I spiritualize the notion of dying. And, yes, I believe I am dealing with it on an emotional level. What will happen to all of the "-izing" once I am actually on the precipice? Part of the mystery, I suspect. It is my hope that the "-izing" will make that passing into that mysterious realm similar to jumping off of a bridge over a deep ravine with a giant bungee cord secured around your ankles, or jumping out of an airplane with a parachute. You have have to have faith, that as frightening as that first step off of the precipice may be, that you will be OK.

As to what, if anything, will be there on the other side of dying, I am only certain that I simply can't know. I don't believe in heaven, and only for Christians, pshah! Sitting there for eternity waiting for the Messiah (to do what?) seems like Hell to me. Simply thinking "ashes to ashes and dust to dust" is the most rational thought, but then again I do believe that there are ethereal spirits, ghosts if you may. So that leaves me...... in doubt. The Buddha says there is the Middle Way, which in this instance would seem to be to leave yourself open to the Mystery. Ah, well that is out in the future, and today is now. I best stick with it there I suppose.

Fixin' To Die Rag

February 3, 2012

So, why the rather bleak title of this blog? I suppose part of it is the dark humor I have always been somewhat inclined towards. The other part that makes it into my consciousness is its connection to Vietnam, and how Vietnam evidently ties into my cancer. I was diagnosed with Multiple Myeloma in 2008, that after spending a couple of years being treated for a renal function disorder. It turned out that the kidney problem was simply one of the "multiples".

This is my second cancer, the first was Non-Hodgkinson Lymphoma back in 1991. Both of these cancers are linked to Agent Orange, and being a Vietnam vet (1968-69, 524thMID (CI) QNFO) I am now a Disabled American Veteran (DAV) and on 100% disability. Yeah, it sucks, but the pay is good.

I was first on Revlimid (a direct relation to the drug thalidomide!) back in 2008 and it worked for a couple of years. This last Spring tests indicated that my numbers were climbing back up and we gave it another shot of the Revlimid over the Summer, but it failed to affect any significant change so in November I started IV chemo (Revlimid was in pill form) with Valcade. After three sessions the abnormal blood cell count was down, but the protein spillage number was up. Also I was experiencing some breathlessness and fatigue. The bad protein, amyloid, has been effecting my kidney for some time now, evidenced by edema in my lower extremities. Amyloidosis can deposit itself in a number of places in the body and will cause them to eventually shut down. Having read up on it, I was therefore not surprised yesterday by my visit to Dr. Cavelleri, the cardiologist, in Spokane. He just made it official: un-reversible protein deposits in my heart. There are no treatments at this time to turn around the damage already done, and what has to happen is that the we need to impact the myeloma and stop it from turning out the mutated cells. In the next week or so my Oncologist will recommend going back on one chemo or another, or will be looking a stem cell replacement procedure. We'll cross that bridge at that time.

So, that is the short summary of why I will be writing this blog. This cancer is a terminal disease and I want to write about this journey I am on. However, I want you to understand that, although my path is unique, it is your path as well; we all come to the same point eventually. Perhaps my experience will help others on their own journey through life.

I will warn you that I can be rather wordy and long winded. Also, I will throw in my philosophical beliefs, which are largely influenced by Buddhism. While I do attend the Spokane Buddhist Church on occasion, I am not real good at "religion", but I do feel that what under lies most religious thought are basic philosophical agreements that we can all use in our lives.

I am going to write this, for the time being, without spreading the word that it is out in the blogosphere. If people find it, OK. When the time is right, I will let my family, friends and others know it is here.

Thanks for your interest. David