A Year and a Half Later

      A rather large hunk of time has passed since I last wrote,  nearly 19 months.  And I am still here!  In August and September of 2012 I went ahead and did the Stem Cell Therapy (SCT) back in Boston.  As great as my fears were, it wasn't as bad as I thought it might be.  It was a challenge on the two days of chemotherapy, where the drugs essentially destroy your immune system prior to replacing your own stem cells that they took earlier.  On the two chemo days I had to eat ice chips for about a half hour while the drug was being infused into my body; it was not easy, but it was not impossible.  I had the support of wife, son and daughter there with me.  The ensuing days were, to say the least, strange.  I was given some hormones that must have been loaded with estrogen as I would cry over almost anything, a song, a thought, trying to talk with anyone on the phone.  The male "ego" in me had a hard time accepting the crying, but I also found that it was an extremely creative time for me as well.  It is an aspect that I would like to access more often.
     I returned to Boston in the Spring as well as this last September.  The prognosis?  Basically, it didn't work.  They wanted me to go into some clinical trials.  On the the other hand, having been off any type of chemotherapy for over a year I feel so much better.  The attempted cures may have slowed the progression of the disease, but they were debilitating in terms of my body and quality of life.  That is where I am now.  My Spokane oncologist, Dr. Hakim Kaya, can do one of the clinical trial drugs right here, though I would not be in a trial per se, I would just be in treatment.  What do I want to do?  Try another drug therapy and feel….. what?  Would it extend my life at the expense of feeling good?  Just how fast is the disease progressing? They can't say.  Where the amyloids are attaching themselves are to my kidneys, my heart and my nervous system.  I could choose, I would prefer they attacked my heart rather than my kidneys.  The thought of doing dialysis is quite repelling.  Dying from kidney failure is even more frightening.
     At this particular point in time I am really choosing not to think a great deal about "the end".  I am more focused on going to Hawaii in a couple of weeks and after that a trip back to Boston to see the kiddies and Ryan, going to Mexico for Brian and Amanda's wedding and then hanging out in LaPaz.  And in the Fall, going to Paris!  I really don't have any control over what will come health-wise, what will be will be.  So I will put these hopes and dreams out there and continue to look hopefully forward.

Running Behind, Catching Up, Making Decisions

     It's June, so you may be asking, "What happened to May?".  Boston happened; time to be with Ryan & family, but also a week at Boston Medical Center (BMC) seeing practically every specialist of medical practice that there is.  Actually, we were very impressed with the time the doctors and staff took with us, but it was sure longer than the 2 1/2 days we thought that we would have; indeed, we had appointments each day of the week.  We already knew the recommendation, but on Friday they have a joint committee meeting of the specialists and others to review the cases of the people they had seen during the week.  Their recommendation for me is to have the Stem Cell Therapy (SCT).  The most aggressive one.

     Perhaps you would think I would just jump on that rope and swing to the other side of the canyon, but that rope is a little dodgey and the fall pretty much lands you on some sharp pointy rocks.  You are not going to get back up right away, if at all.  So here is the schedule you follow.  Read it and consider it as you were the one making the decision.

     You arrive on a Wednesday, visit the Hemotologist, then the Nutritionist and then the Transplant Nurse Practitioner.  Next day they place the catheter in your chest under conscious sedation.  Then three days getting stem cell growth factor injections, which make you feel like you are going through a serious growth spurt, with aching bones.  Three days of stem cell collection along with a visit to the Psychiatrtist ("Wassda' matter wi' you?!  You muss be crazy to do dis' shit!!") and medication teaching and emergency instructions..... uh, emergency?  Then a couple of days off, but I don't think I am allowed to be around the grandkids, certainly nobody who's sick.  Then the chemo.  This stuff is so potent at killing fast growing cells that they pack your mouth and cheeks with ice to help prevent mouth sores ("10x worse than canker sores"... ouch).  Two days of that, a clinic visit, then a day of getting my healthy stem cells back.  After that growth factor injections and antibiotics "every day until blood count returns to normal", which can be a couple of weeks.... or more.  During this time we are in "the nadir period- expect red blood and platelet transfusions and possible hospitalization".  Then it is get back to normal(?), release after 6 to 8 weeks from BMC and a recovery period of six months to a year.  "Success rate", you ask?  Well about 40% complete remission and 30% partial remission are the best figures we heard, but then we also heard lower figures.  And the other 30%?

     So, for the past month I have been pondering this; what should I do?   It's giving up a lot of the best time of the year and plans; a family reunion on Orcas Island, my 50th HS reunion, bone digging in Montana, fishing, sunshine and time with the grandkids, family and friends versus the above and a long, hopefully, successful recovery..... or not successful.  Do I take the time I have and be thankful for that or take the dice in hand and throw them?  I don't want to "cling" to this life and just do everything medically and scientifically possible to stay alive no matter what the cost, financially, personally or at the expense of others, especially my wife's.  That just seems wrong.  But what if it gave me three, four or more years of relative good health?

      I spoke to Sensei Paul Vielle  at temple, asking about this Buddhist notion of clinging.  I was surprised when I found myself crying a bit, but fortunately we were at the end of a table away from the others.  He reassured me it is OK for me to want to fight for life, that is a human response and if anything Buddhism recognizes our humanness.  Still, I do feel a little torn on this spiritual level.  I remember visiting a Buddhist nunnery in Laos that had large murals painted on the walls, depictions of Buddhist Hell, which I didn't even think that Buddhists believed in.  Graphic depictions of demons with knives cutting out tongues for lying, people burning and being stabbed, bitten by snakes and rats; you don't want to go to Buddhist Hell!

     So here is my picture:  I am at the edge of a sheer ravine into which a fall is certain death; behind me is a fire which is making its way towards me.  In front of me is a rope vine, frayed and of questionable strength, but it will take me to the other side.  However, the other side, even with its greenness, flowers and vines, is shrouded in clouds and you catch glimpses of golden and green eyes of... what?... peering out.  What, really, will I be escaping to?

     Death is our ultimate reality and I accept that. But what death truly means is a mystery, isn't it?  It could simply mean blackness, nothingness, a "I am no longer I".  Then, however, I run into my belief that in fact there are spirits and ghosts, which says..... what?  That is the mystery.  I honestly can't contemplate either heaven or hell, but then what is it that is "out there"?

     I have had so much support from everyone, family and friends, assuring me that whatever my decision they support me.  That is so reassuring, but still the weight of the decision has been heavy.  It has been more than a month since we were at BMC, time that may have been critical, time that may have allowed the Amyloidosis to further infiltrate my body and its organs.  We don't know the rate of progression, much less the future.  So I simply have to, as they say, "fish or cut bait", or a bit more crudely, "shit or get off the pot".

     DECISION:     I am going to do the SCT.  Don't ask me, "Why?", because I am not exactly sure that I have an answer for you, much less myself.  I just had to decide.

The Things Inside Us

I should be happy. Today was my last chemo; at least for awhile. We will be leaving for Boston in 10 days to visit Ryan & Family and then I will be an out patient at Boston University's Amylodosis Treatment and Research Program for 2 1/2 days. They will do all sorts of tests and come up with some recommendations for treatment. Nothing for a cure or lengthy remission, but perhaps to buy a bit more time. I keep my expectations low, then if there is something good to come of it, well then we can really celebrate. I the meantime, I feel like crap.

In addition to the chemo induced fatigue, not much of desire to eat (and what I do eat is largely soup, cream of wheat cereal, pudding, Boost, juices, etc.) and the constant pain in my calves and feet, I have a cold. On a scale of 1-10 I am at 1. The weather is cold and cloudy with periods of rain, snow or hail. In spite of the woods being full of buttercups, the purple and yellow of the crocuses around the house and the obvious budding of the serviceberry bushes, it seems that Spring is still a long ways away.

On the way to treatment today I was reading the paper in the car. Anymore you don't need a whole lot of time to read the papers, unfortunately. I peruse the headlines to see which ones deserve reading, go over the Opinion Page, the comics of course and the obituaries. Generally in the obits I am interested in seeing how many of the people were WWII veterans. One today described an older man who had been diagnosed with Multiple Myeloma, Stage IV, three and a half years ago and how he had "battled" and "fought" his "war" against cancer, a "hero". I asked Peggy not to ever describe me in that manner. I served in a war, I'm not a hero. I have cancer and I go through the treatments, I'm not a hero.

Returning home I spent the day on the couch and in my chair watching episode of the BBC program, "MI-5", a British spy craft series. After Peggy returned from visiting our daughter Caryn and the girls, she fixed dinner. I got out of my chair, put a couple of logs in the fire, climbed the stairs and went to the bathroom. I was so out of breath that had to be a "squatter". How utterly useless you can feel at that point. We talked about it and Peggy said how hard it is to watch me suffer. Being down, with the fatigue, the eating issues, the pain in my legs, having a cold, the depressing weather, it's not easy for her to be on the outside of all of that. But she's there, trying to get me to eat and drink liquids, taking medications, doing the chores I don't do. I feel as sorry for her as she does for me, I suppose. There are so many things she wants to do and here I am, a bit of an anchor.

After dinner I came back down to my lair and picked up my ukulele. I have had it for four months and while I have made progress I will be the first to admit I have a long way to go. That's OK, I am enjoying it; I can play a number of chords and move my fingers over the frets to play a few songs.

One of the songs that I am working on is "Harvest Moon", by Neil Young. I think it is a wonderfully sweet and romantic song . I was going over a little part of the song which is simply two chords and the three chord refrain, "And I'm still in love with you, I want to watch you dance... again. Because I'm still in love with you, on this harvest moon", then the refrain. I played it several times, singing quietly along and then the flood began. I just cried and I cried, as quietly as my singing, to myself, alone.

I am not very good at expressing my feelings, I know. What was this outburst about? Love. Loss. The future. The things I don't talk about very much unless someone asks me directly or when I am talking with my counselor. Why is it so hard? Some of it was the modeling of my parents growing up; some of it was the training while I was an intelligence agent and then as a counselor. As a counselor I always encouraged my students to talk about their feelings, but it must have been one of those "do as I say, not as I do" kind of things. If it were just me that was effected by that approach, it wouldn't be so bad, but it was a disservice to Peggy and still is. We are a strange lot, us humans, aren't we?

No Salt and Other Non-joys

For some time now, food has not been much of a joy. I have enjoyed, for all of my life, eating and I like to think of myself as a bit of a "foodie". I have enjoyed cooking, international dishes, new tastes and spices, and old standards, be that a casserole or pickled pigs feet. However, with the chemo it appears that my taste-buds have gone on vacation and my esophagus has decided that it doesn't want anything "chunky" to reach my stomach. Most unpleasant.

Then there are the issues with my kidney. The protein spillage and the build up of amyloids in the kidney had been causing edema in my ankles and lower legs. For that they have had me on Lisinopril and a diuretic, the latter making me pee a lot in an effort to keep the liquids from settling in my legs. Of course the doctor wanted me to do one other thing to help my kidneys: eliminate salt.

He arranged for me to have an appointment with a nutritionist to discuss this with me. It took a couple of weeks before I could get in to see her, and with the food issues I wasn't too keen to eliminate salt from a diet that is already lacking in flavor. Peggy and I were introduced to a pleasant enough young woman, perhaps in her mid-twenties, definitely younger than our children. With all of that "book learning" she was quite confident about her expertise. She went on and on about foods that I shouldn't be eating. The more she went on the more sarcastic I became, not quite rude, but not very open to her suggestions. I think a more experienced person might have been able to better read their patient and dropped the nutrition talk and started taking with the person. As it was I dropped further and further into myself and had little to say as we left the office. Before we went outside I went to the bathroom and just broke down and cried.

Through all of this MM, I have been quite able to talk about the cancer, about death and dying. Why was this such a big deal? Why did I have a bit of an emotional breakdown over "salt" of all things? Was it simply because of the food issues I am already dealing with? Or could it be that I really haven't dealt with the emotions of death and knowing that it is a reality, one closer at hand than I would like to think it is?

This certainly isn't the best period of my life. My first cancer had some hard times, but once I got through those times, we were back to the "good life". I know that with Multiple Myeloma things are not going to be going into any sort of long term remission; that's a given. But when I look to the future it is hard to believe that I will get back much of that "good life" again. The diarrhea, the fatigue due to the low blood pressure I have, the food issues, the pain in my legs and edema take a lot from you. Should all of this pass in the future, this post will look pretty silly and "whiney", but that is how I feel today

Living With Contradictions

There has been little time for writing this past week, much less thinking. Lots of loving people in my life are in contact, offering to help somehow, visiting, calling, etc. It is all so greatly appreciated, but, increasingly, I find that I enjoy times of solitude as well. When I don't get them I really do miss it.

My medical records have been sent off to Boston University's Amyloidosis Treatment and Research Program. They will review my information and decide if I might be accepted; if I am, we will go back to Boston and I would have two days of intensive outpatient testing and meetings. They would then make recommendations to my doctor here in Spokane about treatment, which would be done here. I look forward to it as an excuse to go back to spend time with Ryan, Salina, and, of course, the grandkids. Also to go have a good single malt at the Harvard Faculty Club.

I have also thought about what I might feel if they say, "No, it doesn't look like there is anything we can do". I believe I am prepared for that and able to accept such information. However, perhaps I am just fooling myself, my self-delusion, and that in fact me and my ego will keep clinging on to this mirage that "self" mustn't come to an end. That is my greater worry. Strange, isn't it? That in itself seems to clash with my notion that I must live in "the now". Projecting into a future that is not really there.

If you are even slightly familiar with Carl Jung, you are likely to have heard the term "our shadow", a reference to that dark side that we all have, tucked away and hidden, we hope, from all who know us. We hide it because is the part that really conflicts with the mythology that we create about who we are. We know the thoughts and perhaps deeds we commit that we wouldn't want our loved ones, friends and relatives to know about because they are just plain "wrong" and we feel "shame" for having them. But, in fact, this shadow is a part of our humanness and it is universal. It is a hard to come to grips and accept that part of ourselves. We certainly don't seem to be able to accept the shadow in others, especially the high and mighty; we love the spectacle of seeing others being crushed and falling from the sky of celebrityhood and power. Maybe we can see the same shadow in ourselves, but our moral rectitude demands we protest against those whose shadows have had the light of publicity shown on them.

I know my shadow side and while I am not going to go singing about it, I do believe that having accepted the fact that it is there allows me to chip away and make it smaller. Still, it is a contradiction in my life. No doubt I have many other contradictions I live with.

Thinking about nature, the thought of water currents came to mind. They all have a direction, right? But then, along the shore, the periphery, there are eddys and little whirlpools that go spinning about randomly; they are a contradiction as well. Well, perhaps then it is OK to have these contradictions in our lives, as long as we can focus our direction in a singular path. I am good with that.

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.