BUMPER STICKER BIBLE



When I write I do so as if I am in conversation, seldom editing very much. Just as in speaking to another I will often search my memory for that word which most powerfully expresses that which I am wanting to say as clearly and precisely as possible. I do that now.

There are several aphorisms that have fused themselves upon my mind over the years and rested there continuing to teach me a profound truth secreted in their , often vulgar, banality. One of the most powerful aphorisms I literally saw on a bumper sticker many years ago. It is simply:

SHIT HAPPENS

It means exactly what it says. No matter what we do, no matter how perfectly we plan, we never control the events of our lives. Sometimes we luck out and things go "our way", but more than not an unknown, and often an unwanted, intervenes with our way. This occurs from the level of a an unexpected traffic jam to one of the most dramatic examples of which I know. Several years ago two very close friends of mine planned a truly over-the-top wedding for their adored only daughter. It was to be a major feast held on the grounds of an old Hudson River estate outside of New York. Cocktails and the wedding itself were to be held on a gardened terrace overlooking the Hudson Valley with it's meandering river miles below. Exquisitely gorgeous. The very best money could plan or pay for. The plan nailed all the cliches for a truly memorable occasion. Except shit happened in the form of a daylong torrential rain. The events were moved inside to the glass enclosed dining room which still afforded a spectacular view. Except shit happened again in the form of a persistent fog that provided a complete white-out outside. There was no view. Money spent, endless planning, great intentions had no effect whatsoever.
Shit happened.

As a caveat, my friends were downright heroic in their well-practiced ability to include what is. And they recognized that it was to be a wedding different from their plans. Rather than a gorgeous view to distract the guests from what they were doing there, the exterior mist created a cozy shroud about the room and allowed the guests to focus on the ceremony and each other. And quite honestly it was by far the best wedding I ever attended.

So why I do I write of this anecdote? One of the most frequent occurrences that I have experienced during the years since the cancer diagnosis is that of a close friend beginning to tell me of difficulties he or she may be experiencing only to stop and back off saying something to the effect that: "but it's not like cancer." And I think:"Oh but it is!" Yes, I know that my friend will most likely not die of financial or marital problems, but it is still shit and it is happening to them. They don't have cancer, I do. That's my shit. And shit is shit! Horse shit, bull shit, dog shit, or my favorite, rat shit!. It's all shit! And when shit is coming at you there is nothing to do but deal with it, manage it. When your relationship is on the rocks, when you're facing devastating bankruptcy, when you're losing your job, when you're adolescent kids are a pain-in-the-ass, or when you're just plain overwhelmed with rat shit (defined as those innocuous but constant and repetitive breakdowns like taking the car into be fixed for the same problem three times or spending hours on the phone hassling with insurance bureaucracies) - shit is definitely happening in your life and you have to deal with it. And it doesn't matter if I have cancer or not.
I know that from inside my bones and I truly want you to know that, and know that I know that.

Now if you get cancer, or any other critical disease or affliction, I can guarantee that your shit will instantaneously become elephant shit and knock the rest right out of the water. But, God willing, that doesn't happen. Nevertheless, there is a learning in what I am experiencing and attempting to convey to you. The practice is always the same. As humans we are Focus mechanisms. All we can ever control or direct is where we put our attention, our focus. You've probably heard this in some form or another a myriad of times. But like all basic truths insight is quite useless without practice. I have written about some of the difficult and distasteful aspects of my illness because I wanted to ensure that you were aware that I was not being pollyannish.

Allow me to say it as clearly as I am able: These multiple illnesses in my body really, really SUCK!!!

I would rather have hay fever! But I don't. So I am left with the choice of being a cancer victim...or even a survivor...or battling cancer, or I can deal. I can focus upon what is present each day and then set out to manage it as best I can regardless of how I feel. I choose the latter....even when it sucks.

So I live with cancer....and with heart disease....and with polysistus kidney disease. And some days I get up feeling okay, make a daily plan, and it all works out. And some days shit happens. But my practice is to refrain from complaining as best I can, delight in the beauty of my natural surroundings, take great pleasure in a lunchtime conversation with a friend, thrill at my ability to be able to walk and drive independently, and to keep finding ways to remind myself to be appreciative and grateful for everything that happens to me on any given day.And I often fail at my practice. That is the nature of practice versus the illusion of perfection. But so what?
I am where I am.

GOODBYE, ELIZABETH, AS WE BOTH MOVE ON

The previous entry was upsetting for several people to read. I had given considerable thought to including it and came to the conclusion that in order for me to be as authentic as possible in recording my journey through this medical maze I had to include my darker experiences and as much of the full range of my emotional responses as possible. That entry recorded a really difficult week for me and while it was not without its positive moments it was challenging to keep from sliding down a negative spiral. But the week did come to an end and so did my fear and negativity. I was then left with a simple grief at the loss of Elizabeth, my doctor. Her fellowship at Dana Farber Cancer Institute is complete and she will be leaving to be the resident expert in some other hospital. I know that is how the system works. And I also know that I remain in the very best expert hands of Dr Robert Schlossman and the entire Dana Farber institution.

The cancer portion of my journey began in January, 2007. I had flown up to Provincetown to empty Treetops, my wonderful hilltop summer hone, in preparation for its sale. My twenty-two year old friend, Jon Cody, spontaneously and somewhat inexplicably, insisted upon coming with me for a day to help me. He cleaned out the entire attic carrying enough detritus down three flights of stairs to fill a waiting dumpster. I was unable to bend down and pick up a piece of paper. I thought I had thrown out my back but I now believe that was my first experience of the bone pain that was to accompany the spread of the myeloma. Jon Cody’s unexpected assistance was invaluable and what I have come to understand as a sign of the astonishing love and abundance in the universe.

It would be easy to be disappointed and bitter with thoughts of selling my house and flying off to retire in paradise only to get cancer. But I have never done that. Although I was as yet unaware of it, I had cancer, and so I was immensely fortunate to have sold my house in a descending market thereby providing me with the financial means to support myself during this process. Thanks to this fact and to electronic bill-pay, my financial responsibilities were handled while I devolved into the depths of my illness. And that began in April of 2007.

I had felt acute pains beneath my shoulder blades whenever I was standing and doing virtually any task. They were relieved only by sitting or lying down on soft, cushioned furniture. For a month I went to a chiropractor who manipulated me a bit, covered me with green lights, and assured me I was getting better. I also read and was impressed by a book which attributed most illnesses to an imbalance of brain chemistry. So I tracked down his office in New York and made an appointment for a full three day physical evaluation. It turned out that it was a Park Avenue anti-aging clinic which specialized in the Human Growth Compound. At the very last moment this doctor intuitively referred me for a PET scan which was not part of his protocol but which revealed the presence of the multiple myeloma. In a good/bad scenario I was fortunate: Human Growth Compound would have fed the cancer cells. I was also extremely anemic so they wanted to hospitalize me immediately. To this day I can’t explain why I went this circuitous route rather than just going to Boston to see my extraordinarily competent primary care doctor, Stuart Mushlin. In any event, I insisted that they call him and he arranged for Brigham and Women’s Hospital to have a room ready for me as soon as I could get the shuttle to Boston.

The next morning I was awakened by Elizabeth who had been called by Mushlin from Dana Farber. Her presence confirmed my diagnosis. She was to become the face of my hope and trust in what I have come to consider my medical dream team! And, in fact, she has been very caring and extraordinarily responsive. I know that all decisions were made in consultation with, and probably even originated with Dr. Schlossman, but for the most part, it was Elizabeth with whom I discussed them. I am enormously grateful for the privilege of knowing and working with this magnificent doctor. Thank you, Elizabeth, for all the hope and care that you have provided me during the worst of this illness. Thank you, and may you be blessed in your own journey. You have been an invaluable gift to me and I will miss you. You are an invaluable gift to the world.

And today I am in the midst of the second cycle of chemo. The day started out great but the intestinal problems have returned, somewhat less, but are still uncomfortable and inconvenient. I find this side effect to be the most challenging and the hardest with which to maintain an accepting attitude. Nevertheless, there is nothing for me to do but to manage it and keep doing what I want and need to do. And remind myself in every way that I am still here, I'm still able to move about and do most of what I want one way or the other, and so I'm good, very good. Considering.

IS THIS WEEK OVER YET?

Following an entire weekend spent tethered to the toilet, I took the required steroids and went into Holy Cross for my Monday spa day. However, my platelets were too low for me to receive the Velcade so I left without it. Initially I found this worrisome until I learned it is just what the chemo does and I will have to wait for the platelets to return and/or to reduce the level of the Velcade. Since I didn't have the Velcade I didn't take the steroids on Tues; thus began the steroid withdrawal.

On Tuesday I was feeling tired and vulnerable. While Jeff and I were discussing my current and possible future home care needs he said something to the effect that the house and all its responsibilities were more than I could handle on my own. (His fear was that should I suddenly deteriorate, as well I could, then he would be left with full responsibility for me and my care.) I glanced out the window at the river feeling as if pierced by a knife. I felt bereft as I thought of losing this house that I love so much and I began to cry. For the very first time in the two years since I was diagnosed I plummeted into a depth of grief and anger I had not been able to even skim. I sank into the throes of self-pity. And as I cried my mind silently screamed at the unfairness of it all! And then, like our daily tropical storms, it passed as suddenly as it had arrived leaving behind puddles of sorrow.

All the time I have been writing this blog I have scanned my internal horizon looking for this anger and grief but finding nothing. To find it, to feel it, to express it rinsed away some level of denial of which I was not even aware. Both Jeff and I were left in tears at the sheer emotional rawness of it. And, ironically, both of us felt liberated by it and have gone on to effortlessly establish current and contingency plans for my home care as I may require it.

That was Tuesday morning. In the afternoon I received an email from Elizabeth Trice, my oncology Fellow telling me that her fellowship was coming to a close at the end of this month and she was leaving both Dana Farber and the study of myeloma. Quite simply, Elizabeth is a medical and human treasure. She has been the smiling face and warm heart of my medical Dream Team.


The morning after I checked into Brigham and Women's Hospital in Boston to double-check an earlier diagnosis of Multipla Myeloma that I had received in New York, I was awakened by a young doctor standing at the foot of my bed at 7 AM introducing herself as Dr Elizabeth Trice, an oncology fellow at Dana Farber Cancer Institute. I immediately knew two things: I really did have cancer and I intuitively liked this woman. From the very first moment she has been the one with whom I have had the most trusting and affectionate relationship -even when her caution sometimes annoyed the shit out of me. During the process of my recent operation to install a titanium rod in my left femur I had to be checked out by several specialists. Elizabeth emailed one day to tell me she was tracking me everyday through the online tests and notes that the others would make about me. That is a kind of medical practice that originates in the heart! She has long been at the very core of my love story.

The man she worked for, Dr Robert Schlossman, is a brilliant expert and I trust his medical judgement without question and feel quite secure in his profesional hands. Nevertheless, I will miss Elizabeth like none other.

Three hours after the email I became aware of a fairly sharp, unrelenting pain in my ribs. My intuition, which I struggle to doubt, tells me it's bone pain. Few things frighten me more.

Exhausted, I tumbled into bed where I proceeded to wake every hour all night long and every night since.

CANCER: A LOVE STORY

I changed the name of this blog for two reasons. First "A Chat With Gary" was the name my ever-generous friend Javier Cortes gave it just to set it up for me; it was not intended for any other reason. Secondly, this blog was originally conceived to support me in remaining in communication with my friends, especially those in distant locations, without having to repeat the details of my medical progress. It continues to serve that function.

However, it has also come to serve a more important function, at least for me. It has become a vehicle in which I can express my reflections upon the experience of this critical process which engages so much of my being during this period of my life. What I consider to be the third, and therefore final, third of my life.

This "final third" began when I was fifty-six on New Year's Day, 2001, during a celebratory gathering I hosted in my house in Brookline. I had invited my friends to declare what they wanted for the coming year. I announced that after much deliberation I was going to close my private psychotherapy practice of twenty-five years, rent my two houses, and embark upon a "spiritual journey". Unlike a sabbatical, this journey would have no desk or date of return. I began the journey at the suggestion and in the company of my friend, Jeff Hull, when we travelled on a Spirit Journey's pilgrimage to the sacred sites of Peru. The theme of the pilgrimage was cleansing or letting go.

When we returned we spent the summer at Jeff's extraordinary riverside house in the Catskill mountains doing very little and enjoying my first free summer since I got my paper route at age eleven. Then in late September, in Santa Fe, as I was engaged in co-leading The Gathering, a community retreat, with Jeff and my long-time friend, Judy Fox, I had a heart attack. It was complicated and dramatic since I had to be moved to Albuquerque for the actually surgery. While there and heavily sedated an ultrasound technician showed me my diseased and badly cyst-encrusted kidneys the result of a degenerative kidney disease called Polysistus Kidney Disease. Since it is most often genetic I assume that he assumed I was aware of it. I wasn't. I'm a mutant. No one in my family has ever had PKD. Currently I am in the final stage of kidney functioning - wherein I intend to remain for some time yet. (I did say final third of my life!)

The point is that I entered the hospital in Santa Fe with the identity of a very active, youthful fifty-six year old who had never had any health concern beyond a common flu and I returned home with an entirely different identity. And I didn't know it. I had no idea that the nature of my spiritual journey would revolve around engaging with my mortality and what it meant to be truly alive and awake. Or that it would mean confronting my addictive, comfort-seeking thoughts and behaviors for the sole purpose of seeing who I am without them. Or that it would be an opportunity to learn to really let go and be still. And to see what wants to emerge from the depths of my being.
Before I croak.

SPA DAZE

I am beginning to find a rhythm to my medical treatment here in Florida. I am on a three week cycle of chemotherapy - two weeks on/one week off. I have no idea how many cycles I will need to experience before I go into remission again. That's for tomorrow. Now I go into Holy Cross Hospital one mile from my house on Monday & Friday mornings where I receive my transfusion. It begins with drawing blood for an updated blood test and a saline drip just to hydrate me. If the test comes back with questionable results; ie: lower platelets, as it did this week, the doctor has to be paged for permission to continue with the Velcade infusion. When that happens I am given anti-nausea pills and we wait twenty more minutes for them to take effect. I either doze listening to serius radio in my recliner or write on my laptop. The Velcade then takes about five minutes and I leave.

From there I make the twenty minute drive to Boca Raton to Leslie, my accupunturist, where she treats me to blunt the impact of the Velcade and yet enhance it's effects. She also gives me anti-nausea treatments. I ususally fall asleep for thirty minutes stuck full of needles and wake enormously relaxed. I arrive home about 4:30 PM. So it pretty much takes the entire day twice each week. But so what. I just don't schedule anything else at all during those two days and I have come to refer to them as my "Spa Days" - anything to avoid regarding them as grim.

I was told by Pat, one of the wonderful infusion nurses, that the side effects of the Velcade will be cumulative - so much for easy entry. Yesterday I was hit by non-stop diarrhea and I remain tethered within ten feet of the bathroom. Can you imagine what it is like to wear pampers at sixty-four??? (At least there is still NO NAUSEA!). The neuropathy in my feet is also worsening. Fortunately, there is no pain. Rather, the soles of my feet are increasingly numb. It used to be like walking with clumps of sand in my shoes. Now it is more like shoes filled with sand. It is annoying. And since it is the nerves on the soles of our feet that aid us in navigating across the ground, and since I have to learn how to walk unassisted after my operation, I feel a bit like a drunk trying to "walk the line."

And yet. As I write this on a clear and beautiful Sunday morning I am sitting in my favorite teak chaise by the side of the river just in back of the opening photo of the riverside bench. From here I listen to the mating songs of the two jays swirling about me and I glance up every now and then to look at the passing boats. Lucky lies asleep next to me and the palm fronds sway overhead in this delicious breeze. I am moved to tears by the beauty and grace of it all. In this moment life is very, very good.