KNOWING THE DIVINE

I found this quote on a website that I was researching. If you reflect on my past blogs you may recognize strains of it when I talk about my love of sitting in stillness by the river. With simplicity and elegance Buddha expresses a truth that I have experienced in the past, but without fully understanding. I share it with you now as my Christmas gift to you:


IF YOU WISH TO KNOW THE DIVINE, FEEL THE WIND ON YOUR FACE
AND THE WARM SUN ON YOUR HAND.

Buddha


I am writing today feeling more my normal self thanks to my weekly steroid boost. I have been too depressed to write before. I was truly dark. And afraid. In the three years that I have been aware of living with this cancer my attitude has been predominantly positive and relatively accepting. And here I am still alive and loving being alive and living with kidneys that refuse to quit on me despite the chemo onslaught necessary to restrain the proliferation of the cancer.

The past three weeks or so, however, have been very different. I couldn't sleep until 4 or 5 in the morning, I was emotionally volatile, but worst of all I felt hopeless, angry and negative. I would be constantly having thoughts that could be summarized as: "What am I doing, eating and waiting to die? Why bother?" Quite apart from feeling unhappy and often miserable, I knew I couldn't survive with this despairing attitude. After some time, about four o'clock in one anxiety-ridden morning, I realized that I had unwittingly done this to myself!

I have taken 1mg of klonipin at night for the past three years to help me to relax for sleep. Then on the suggestion of my oncologist I let my klonipin run out and tookattavan instead. This despite forty years of work as a therapist and knowing the dangers of rapid withdrawal from such medications! Last night a friend loaned me some klonipin and, voila! - I slept for nine wonderful hours. I plan on returning to the klonipin regimen and, hopefully, to that attitude and sense of self that has gotten me this far.

That attitude wherein that which I most cherish is sitting in stillness by the river feeling the breeze on my face and bathed in the warmth of the sun...

************

May you awake to being enveloped by the Divine during this season and throughout the coming year. This is my heartfelt wish and blessing for you, my beloved friend and reader, in the deepest gratitude for your prayers, good wishes, and enriching presence in my life.

BACK BY THE RIVER AGAIN

I returned to Florida a few weeks ago for the holidays and here I shall remain, most of the time, through the next few winter months. By the time I left Boston to return to Florida I was cold all the time and I contracted another case of salmonella, albeit much milder than that of last August. I have recovered from the illness and the effects of the medicine and for the most part feel okay. While Cyclops is fairly gentle with me I do have a low grade fever almost every night. But most of what I feel is the intense discomfort of the neuropathy and a deep fatigue that interferes with doing very much at all, and so I sit by the river.

I am experiencing some type of profound internal change as I sit here. Perhaps it is a result of the fatigue; perhaps something else. I don't feel like making lunch or dinner plans and I can't do much else. I seem to be lacking a certain kind of energetic inclination to talk very much most of the time. When I do go out, as I did yesterday with three friends to Art Basel in Miami, I am often very quiet. And yet I am not bored. And I answered "No" quite honestly to a therapist friend when he asked if I thought I was depressed. Most of the time I feel content...just as long as I am physically comfortable, and all I need for that is cushioned furniture.

Sometimes I answer email, or read, or most recently I sorted through all the photographs of my family, friends, and various times and places of my life. Apart from the delight of seeing the faces of friends from the past sixty years, the photos that moved me the most were of the garden I created out of a driveway at my house in Brookline. It was probably late September and the garden was full of flowers while the ivy had just begun to change color. They were very sweet photos and reminded me how much I loved that city garden for more than thirty years. Ironically, I also turned part of the driveway at Treetops into a garden; another place that I cherished. Paradise Point was never a driveway but I guess I'm still at the gardening thing; even if I don't do the work myself.

The bridge demolition is now complete and I am very much okay with it. The secret garden is completely gone but in its place there is an amazing openness that gives me views of a huge and beautiful tree on the opposite bank of what I have decided to call Paradise Pass! And being able to see water surrounding the point of my property has created an entirely new and beautiful feeling to the garden. I will post photos after we do some finishing landscape.

Speaking of finishing, to my considerable relief Blue Cross has decided not to cancel my health insurance. So while in many ways this has been my own anno horribilis, it is finishing well. As I sit here writing and listening to the sound of a far off train whistle reverberate over the silent water there is a new and deeper peace on the river tonight.
Thank God!

I am concluding the second week of a new chemotherapy which has replaced the Velcade; it is called cyclophosphamide - or cyclops for short! We made the switch because Velcade was really hard on me as I am sure you noticed from previous postings and it caused my neuropathy to worsen considerably to the point where walking is a problem. With the cyclops comes a new regimen as well. There are no more spa days since I take the chemo in the form of one pill per day along with an anti-nausea pill and 25mg of steroids once per week. This is all done at home. I still go to acupuncture twice each week but that is less time consuming without having to follow the morning in the hospital. Most importantly, however, is the fact that this chemo is much more gentle with me. Granted that it has only been two weeks but so far I am having virtually no side-effects.

If I didn't have the neuropathy to focus upon, I would be feeling rather normal. And for the two and a half days following the steroids I do feel very normal. This week I went to lunch with a friend and then to the beach swimming! I wish I could take a steroid or two every day. It's great having energy and motivation. But it is also a bit disconcerting as my identity has begun to shift once again. I no longer feel like "the sick man" so who am I now? I have a sense that I am in some kind of deeply mysterious training about life and meaning. The ground keeps shifting beneath my feet and it is my practice to remain present to the reality of each moment and to who I am in each moment.

In case I should forget that all life is constant change and all that matters is how we respond to that change, I have the visual cues of the changes being wrought upon my garden by the Florida State Water Commission. As you can see from the photo, the garden has been completely destroyed along with the top of the cement bridge. When I was first told about this planned action I was horrified at what I anticipated would be the complete devastation of my garden. Since that time, however, I have shifted in my attitude and I now look upon the project with a tinge of excitement and anticipation. The removal of the trees has opened up the sky in a whole new way and I am now able to see my neighbors truly magnificent banyan tree across the canal. My garden is a peninsula the point of which was obscured by the bridge and my secret garden. Now I am planning to landscape the finished project in such a way as to accentuate the garden being completely surrounded by water. So my earlier, almost knee-jerk despair has been transformed into a passionate enthusiasm. And no thing has changed. What has changed, and changed profoundly, is how I am choosing to respond to the reality of what is. I would much rather be passionately creative than angry and combative.

So great, I created a new reality by shifting my attitude toward what is and soon my garden will be transformed. Now I get to practice in an entirely different and much more challenging arena. Blue Cross Blue Shield of Massachusetts is in the process of attempting to invalidate my insurance policy with them going back three years. They are currently withdrawing all the monies they have paid to my health providers during the past three years. And yes, they are able to do that with a simple computer maneuver. And they are. And you can imagine the havoc that is causing in my relationships with my providers all of whom are stellar professionals. I am very clear why they are doing this now after I have been a client for at least fifteen years but I will allow you to draw your own conclusions. What I have to deal with is who I am going to be in the face of this repulsive action and how I am going to deal with this company. To allow them to continue on this course of activity could well cost me hundreds of thousands of dollars which is to say my health and my home. And yet, I am still unwilling to be angry and combative. Stay tuned; this isn't going away anytime soon.

HAPPY TO BE HAPPY ...WHEN I AM


It is dawn and the river is like glass. The last time I looked out the window it was pitch black so this is a delightful surprise. It is amazing how optimistic I feel once I am out of bed in a dark room and about my life in this beautiful environment. Yesterday I was driving to see the pulmonary doctor and I realized that I was very happy. Just happy. And I also realized that Fort Lauderdale for all its beauty is filled with a lot of unhappy people. Do they come here looking for some external answer to a naggingly internal question? Beats me. I'm just happy to be happy...when I am.

Anyway, Dr Whitmore is a pulmonary specialist with a warm, joking manner whom I liked instantly in the hospital and this was a follow-up visit. He said I did have pneumonia but that the hideous antibiotic has cleared it up; I am pneumonia-free. That is a good thing. I'm happy about that for sure. And I also realize that these opportunistic infections may attack at any time and with no warning. Now that sucks. But I am forewarned so it is up to me to be as prepared as I can be. And I am doing that. I work with Jeff to prepare for these emergency hospital stays and so far that is working. I also have Alex, a delightful Colombian 29 year old make-up artist who is there to relieve Jeff. I currently do very little work around the house and sometimes I'm unable even to drive to acupuncture.
But, boy am I happy when I can drive myself! Not so much with the cooking!

I am also preparing a manual for Jeff, who is my executor, and my brother and close friends, to assist them in knowing what to do from the moment the hospice nurse says: "He's gone". Now please understand that I am in no hurry and have no intention of "going" anytime soon. But it is part of being responsible for the reality of my illness and the realization that not only does change happen - it can happen blindingly fast! Everything will be preplanned and arranged. My friend, Geoff Cornell, and I even went to visit a crematorium so I could get some information and perhaps arrange for their services. It was actually very interesting to both of us. Although Geoff thought that some of my more unconventional questions were a bit disconcerting to them.

Aside from the complications of arranging for the disposition of my home and possessions (not such an easy task when there is not a single partner or children to whom they can be left automatically), I am also planning for three funerals.
(Think: Queen!) Actually, it is to make things as simple as possible for everyone concerned. There will be a simple memorial in the garden here for Florida people, a larger memorial in Boston for everyone from the Northeast, and then a traditional burial in my home town next to my parents and sister who has always been a spirit guide for me. So it is like completing my journey which I began in 2001 and ending where I began it all. And people who want to attend won't have to travel absurd distances. I am asked if any of this disturbs me. Not at all. In fact as I was composing instructions for the services I felt excited, like I want to attend. And perhaps I shall. Other than that I am rather detached from it all. It's busy work and I look forward to its completion.

When I am not consumed with pain or discomfort, and I am felling pretty good as I am now, dying and death remains an abstraction for me. It is not something I spend any time ruminating about. In fact, yesterday I realized that the human body is an extraordinary thing. It is very elaborate and complex and has super powers of healing itself. And that given all that I have in my body that is NOT working as it needs to be, still the vast majority of my body is working perfectly!
That's pretty awesome and definitely something for which to be grateful and I am. And it makes me happy.

THE DRAKE SUITE

It has been nearly a month since I left the hospital following my ordeal of shame. I swore I would put the entire affair behind me and as soon as I was strong enough I headed for a week of medical appointments in Boston. There I had to rediscover my promise to pack a bag of sweat shirts NOT tee shirts for Boston and to schedule my trip about three days shorter than I am initially inclined. The Boston week was somewhat exhausting so the following week I spent napping in an attempt to grow stronger. Then a week ago yesterday I woke with another fever; this time 104.1. Jeff loaded me in the car and took me to Holy Cross once again. I spent the day sleeping on a gurney in the ER before I was admitted to the hospital at 8:00 PM. AND I was admitted to the same room I had occupied three weeks previously. I figure one more time and my name will announce my residence with a brass plate!

This time they kept me for four days as they tried unsuccessfully to discover what caused the fever. There is a spot on my lung and they are suggesting pneumonia but there are no other symptoms. I am extremely tired all the time so I don't know if that is related but what aggravates me is that no one else seems to know either. Nevertheless, I am taking some heavy-duty antibiotics to treat the pneumonia which I may or may not have!

However, what causes me the most distress is the pain from the neuropathy in my feet. It became pretty bad during my last Velcade treatment and it is difficult to walk because I am so unsteady. It is like walking on beach stones. The muscles of my legs also ache in a most painful way that is often relentless. This is all relatively new; perhaps for the past two months or so. I am finding consistent pain to be a real challenge to my humor and maintaining a positive attitude. Jeff has been truly wonderful as he allows me to take time to truly vent all my complaints and whine like hell before I shut up and move on.

I am learning that, despite my wishes to the contrary, maintaining an attitude of appreciation and gratitude does not exclude being real with oneself and others about how difficult and/or painful life can sometimes be.

Life is definitely all of it and so are we.

SURVIVING SHAME


Last Friday was pleasantly ordinary: doing small things about the house, shopping with a friend, Michelle, for special sandals to accommodate my increasing neuropathy, watch a DVD. So I went to bed at 10:30 pleasantly content.

I awoke to the Night of Horrors at midnight. I was so feverish that I was literally vibrating with freezing cold. I frantically started piling blankets upon the bed, turned off the AC, and burrowed into the bed to get warm. It was sometime soon after that that the diarrhea started. The kind I had never experienced before despite it's recurring presence in these entries. This time there was not a nano second between initial sensation and execution. I have no further memories so I will skip ahead to noon the next day. Relying solely on second-hand testimony, what happened next sounds like it was straight out of a Howard Hughes biography. Apparently Jeff finally realized that sleeping-in for me never meant noon so he entered my room where he found me completely out of it, and worse. I was covered in feces, as was the bed, the bedroom, and the bath. Horrified he called an ambulance and had me taken to the hospital where the incontinent diarrhea continued for three more days. And where I was repeatedly changed by nurses in the precise style and pleasantness of an older baby - long after the novelty has nauseatingly worn off.

This has been the most horrifying experience of my life. Even now, just days later, it feels impossibly surreal. Never might I have imagined such an ongoingly humiliating experience. I am a shame-based person born of a mother who couldn't say "shit" if she had a mouth full of it! But somehow I was able to simply surrender to it all as best I could. It helped that the first few days, the worst, I was completely weak and depleted from dehydration and had little excess energy to expend upon toleration or resistance. But still.

This is Thursday morning and I will be discharged within the next two hours. I have been here for five days and I cannot wait to leave. Not that I am not grateful for this medical staff; I am. Very much so. I have been given every conceivable test including an ultra sound of my gall bladder to rule out having to surgically remove it. And the source of all this mayhem? Salmonella! Ummhmm. Food poisoning. This is yet another good news/bad news story. On the positive side I am IMMENSELY grateful that it wasn't some further complication of my multiple diseases. Thank you. On the negative side: WHAT THE @$#%*&^# - aren't the aforementioned diseases (plural!) enough?! or as my usually philosophical friend, George, exclaimed: "Somehow this just isn't fair!" Of course it's not fair. But then nothing in life is fair. We blind ourselves to inequity all the time and soothe ourselves with folk tales of equality and good winning out over bad. It doesn't. Things just are as they are. And how they are is random, unfair, and completely absurd. The world abounds with evidence of this yet we prefer to focus upon the rare and heartwarming stories of some unrealistically ordered existence.

I think that the real challenge is to not lose a grounded sense of ourselves in the face of random absurdity, and especially, unfairness. Who really cares about unfairness. What people really care about is who you are being in the middle of the poop storm in which you find yourself. But even more importantly is searching for and locating your own footing in the storm so as not to lose a sense of yourself. We are here to be who we truly are, not some pleasant, pleasingly perfect replica of the real thing. Although, after this last week...

The nurse just gave me my parole papers. I am going to shower and leave this always chilled environment to go home where I will shave and shower again in my outdoor shower and bask in the warmth and the comfort of my garden sitting by the river and let the breeze waft away the memories of this room and all that happened here. It is over. It is done. And I am alive and delighted to be so...yes, even given the poop storm. Think of it this way: what else could my shame-mind possibly have to fear?

PEACHES AND PEONIES


I did go home and take the oxycodone and all it did was put me to sleep for a brief nap. Which, come to think about it is exactly what it had done the two times I took it in the middle of the night. So I arrived at the office of Leslie McKnight, my magical acupuncturist, with the pain intact and my mood sliding down an emotional sinkhole. The pain wasn't acute by any means but it was relentless and I just felt vulnerable and deeply discouraged. I still don't understand why it seemed so intense but it did and I told Leslie just how I was feeling. After taking my pulse she told me she believed the pain in my legs was related to my liver. And I do know that Velcade adversely affects the liver. She treated my legs with what she called Chinese goop and then needled me. While lying there in the semi-dark listening to soft Asian-like music I slowly became aware that I was no longer feeling any pain ..........and I could observe my mood steadily improve until I was actually feeling good and happy to be alive.

And I am happy to be alive. Two years ago, shortly after I was first diagnosed, I pressed my primary care physician to tell me how long I had to live. My oncologist had sidestepped the question telling me only that I had an aggressive form of Myeloma. But my physician answered me telling me I had about two years. And here I am. Here. Right here at home living independently.(with a little help) Going out to lunch. Reading in the garden next to the river. Pissin n moanin about the chemo side- effects. Even my final-stage-kidneys are holding there own during this cancer- chemo onslaught. I can't say I'm always enjoying this ride but I am definitely happy to be alive.

And I have never before experienced such a profound change as I did at the hands of Leslie. So lying there filled with gratitude for how I was feeling, for being alive, I decided to punctuate my experience by a small gesture of appreciation of this amazing life. I went to the market and bought a bouquet of bright flowers for my kitchen and some fresh peaches for my palette as a way of reaffirming my appreciation for the commonplace beauty and deliciousness of life. I have been pain-free since that session. Tomorrow is another Spa day and after that I have no idea. But I do know that the flowers are still bright and the peaches fresh and exquisite. And I am happy to be here, right here, to see and taste them.

MAKING LEMONADE

It has been harder and harder to remain positive in the midst of the pain and discomfort I feel. I have felt this lowgrade sense of irritability much of the time. It's really annoying. Because I really don't want to be spending my time feeling like this. My spa nurse just asked me if there was anything that gave me relief and I told her that 5mg of Oxycodone did but I only took it when the pain woke me in the middle of the night. She encouraged me to take it whenever I wanted to. It was then that I realized how silly I have been being. The Oxycodone is left over from 2007 so it feels somehow illicit. I don't know what I am afraid of: becoming Rush Limbaugh!!! I'm going to take one of those little suckers as soon as I get home!

I omitted a very important piece of information in my last posting. The Velcade is working. As annoying as the side effects are, what is most important is that the chemotherapy is working and that the cancer cells are receding. So it seems I am heading toward remission. And that's a good thing; a very, very good thing.

And continuing this morning's report on good news I want to provide an update on the South Florida Water Commisssion's response to my garden requests. They did dig up and move two of the best coconut palm trees onto my property. So we saved two of the seven. In the meantime the entire project has been postponed for a few months. I am also engaged in negotiating with them to fasttrack the permitting process to allow me to expand the little sunset bench to a 12X20 deck over the river. So far they seem to be accomodating. I am now focused not so much on what is being destroyed but more on what may be possible. I found a really great landscape designer and I am looking forward to creating a whole new landscape creation that accents the penninsula and the surrounding water.
Change is inevitable, whether I like it or not, so I might as well choose it. And while I'm at it, make it beautiful!

I have wanted to write before now but I have been either too sick or too tired to write. This chemotherapy has been beating up me quite a bit. I manage to see people and take care of some non-physical responsibilities around the house but little more. It seems that the past two months has been about little else other than managing the side effects of the chemo. It's rather boring.

Right now it's 3:30 and I have been here in the infusion room receiving a blood transfusion since 9:30. I was anemic...very, very anemic. A week ago I went to Boston to have my blood drawn and tested at Dana-Farber and to see the Wizard - my oncologist. I had not seen him since I began this Velcade regimen and I was enthusiastically looking forward to seeing him and have him evaluate me and the progress of the chemotherapy. Of course, what I really wanted was for him to tell me I was once again in remission and could stop the velcade. In fact what he did was cut back my steroids from 40 four times each week to 10 twice a week. Given how strong the steroids are that decision was huge. He also reduced the strength of the velcade and gave me another week of drug holiday. So I will feel the effects of the new protocol beginning next week. Hopefully it will be more benign than it has been.

It is now three days later. The transfusion certainly helped restore some of my energy but I think that I had constructed a very different expectation of how I would be afterward. I envisioned myself as feeling much more normal and having the same level of zippitty-do energy that my restless mind thinks I ought to have.
But I don't. I am still very tired and lacking even basic energy most of the time. And my legs now ache all the time. So all I really want to do is sit, and sometimes sleep. And it isn't supposed to be this way. I know because I compare how I am now with how I was before the operation. Or before the chemo. Or before this morning. That's how I should be feeling not this! Anything but this! And so once again, and ever more powerfully, I am confronted with my obstinate resistance to what is. To where I am and what I am. To my present. To the ever present choice of where I am going to rest my focus: the pain and disappointment or the possibility contained in this ever-changing present.
I want my mother!

THE GIFT OF COMMUNITY

Today is Spa Day and I went into Holy Cross feeling like a truck had run over me; I had not recovered from Sunday's gathering. And then it turned out that my blood test revealed that my platelets were too low to be able to give me the Velcade. This apparently is a normal part of the ebb and flow of the treatment and we will simply wait for them to build back up. It was just somehow mildly disappointing since I am anxious for this treatment to knock the myeloma into remission as soon as possible.

Yesterday we had our monthly Community Cook-Out with about one hundred people attending. I was full of energy throughout last month's event but yesterday I began the day tired. I finished my shower just before people were scheduled to arrive and sat out in the back garden under the huge Sea Grape tree cooled by a delightful cross breeze. I hadn't meant to remain there but suddenly people were coming out and talking with me so there I did remain for about another three hours. I had previously determined that I was going to alter my way of being at this Cook-Out. Instead of stationing myself in the kitchen as was my custom where I would receive people and the food they brought, and where I would spend most of the Cook-Out saying hello and good-bye all day in mini-conversation as people arrived, ate, and left in endless rotation, I planned to be present in a different way. So I spent the afternoon in the garden having real conversation with people and only entered the kitchen to prepare my own dinner plate. Either way is perfectly fun and good but yesterday was certainly much more relaxing and physically comfortable for me. And there were no problems in the kitchen as people who knew the routines greeted and assisted new guests. Nevertheless,by seven o'clock I was totally exhausted and I chose to leave for an hour to lie down for rest before returning to my guests. Despite a full night's sleep I awoke this morning with the exhaustion intact.

Jeff and I began the Cook-Out almost a year and a half ago and only missed one month due to some construction I was having done. It has been remarkably successful in its execution. There are now about four hundred people on our Facebook guest list and the list keeps growing as regulars bring their friends. We had determined that what was missing in this Gay Mecca was a non-alcohol/non-drug event which would build community and relationship and fun. The last thing Fort Lauderdale needed was another cocktail pool party. So we have created a successful ongoing community event that works beautifully exactly as we wished it to be through our intention. Initially we provided grilled meat for the first two or three Cook-Outs but were soon dissuaded from the work attached to that idea. Now we provide the grill and they may bring meat if they wish. Most people bring a salad or casserole, or appetisers, or a dessert which makes it much more of a community endeavor and frequently provides for an amazing array of truly delicious food. We invite people to bring drinks of their choice and have never mentioned alcohol one way or another. And almost everyone brings beer or wine but it has never been the focus or the backbone of the events. This last Cook-Out was the best yet. It was a beautiful day and people were everywhere having conversations in the kitchen, the loggia, corners of the garden, on the dock, or playing Boggia Ball and Bean Bag Toss on the lawn, or Wii Bowling in the Pool House. For the duration of the afternoon there was a delightful, playful energy in every corner of this gorgeous property.

Several months ago, during one of the Cook-Outs I reflected upon why I was doing this, because it does take expense and work. And I came to the awareness that while I love the serenity of being here alone or with one or two others, it was also a prefect location to share with a community of people. Both Jeff and I are very much committed to facilitating the development of deeper and richer relationship and community among people, and gay people in particular. And in some ways even more importantly, it has brought a wonderfully playful aliveness into my life which balances the more reflective times. Given the limitations of my physical reality it is such a gift to have this wonderful energy come to me in my own home. It has also produced an unanticipated but extraordinary additional consequence for me as well.

I have been in a deeply personal, platonic friendship with Jeff over the course of the last ten years. It has been a major learning and growth-producing experience for both of us; never easy, often fun, and always confronting. And now we find ourselves living together in a time of acute crisis in my life, and thus our lives. The risk to both of us is slipping into dependency/co-dependency as he serves more and more as a health care support for me. Burn-out hovers in the air. He seeks to maintain the independence of his own life while remaining in close relationship to me and supporting me in times of acute need. I seek to maintain as much of my own autonomy and independence as possible all the while respecting his life apart from me and the demands of my illness. It is yet another and often demanding challenge on this weird and breath-taking journey I am taking.


What I never anticipated when we began the Cook-Outs was the number of truly good-hearted people that I would meet who would come forward to support both Jeff and me during this time. Jeff is spending the next week with his family in Massachusetts and literally dozens of people have asked to support me in any way they can while he is gone. And Mr. "Thanks, but I can manage" has accepted and begun to ask for what I need or want. So I have people who will walk Lucky, drive me to acupuncture, and come over to take me out or to make meals at home with me. I can see the palpable relief that this gives to Jeff and I feel very deeply the security of knowing that I am not alone and somehow required to "carry-on" regardless of how I feel if I don't have Jeff around to rely upon.

These are more of the flowers of love I find growing along this path of living with cancer upon which I tread. Such beauty takes my breath away. And so, once again, I am deeply, deeply grateful.

MY SECRET GARDEN NO MORE

It is a very still and somewhat humid morning as I come out to the terrace to write. The river is a glimmering mirror and not a single palm frond moves. It is all peace and beauty. I feel shakey from yesterday's exertions but I had a full night's sleep and I just feel good. The neuropathy still makes my feet feel like they are in shoes filled with sand and is beginning to affect my fingertips with a slight numbness but I grow accustomed to it and barely notice it when I am otherwise focused as I am now. Yesterday I spent most of the day on the boat with Alan and Danny. Alan had taken a boating safety course with me last summer so I invited him to learn to drive and care for the 30' Bayliner which belongs to my brother but which we now both share. My brother is spending the summer at his home in upstate New York and I am neither strong nor agile enough to take it out myself. After cruising the Intercoastal Canal for a few hours we stopped to eat at a waterside cafe. It was a perfect day. I had none of the usual side-effects and mostly had this wonderful sensation of just being normal.
The happiness and gratitude I felt was so strong it lingers yet.

This is in sharp contrast to the days since my last post. I had intended to write sooner but I was just too sick. What I discovered was that the Velcade regimen and its side-effects is cumulative. It has become increasingly difficult. In addition to the intense and prolonged constipation/incontinence cycle I also experienced a debilitating level of exhaustion that was unmitigated by rest. But most frightening were the days of inexplicable fevers as high as 102 degrees which did eventually disappear with antibiotics. This all took place during the week that I was "chemo-free". Perhaps it was the result of withdrawal from the intense amount of steroids that I take as part of my chemo regimen. I don't know. I just know it is not a fun part of the ride.

Right now the stillness of this precious morning is broken by the carrillon of the neighborhood Prep School playing "As the Saints Go Marching In". I am so fortunate to live here. It gives me goose bumps. It is truly Paradise Point!

And yet, no small irony, three days after posting Bumper Sticker Bible, I was hit by some major elephant shit here in paradise. Paradise Point, my beloved property is in fact a pennisula bordered on one side by a canal and on the other a river. At the end of the penninsula there is a simple cement bridge surrounded with ten foot chain link fencing. Neighborhood boats, including mine, pass from the local canals under this bridge to get to the river and beyond. It was buit by a developer fifty or more years ago to enable him easier access to the property on the otherside of the canal. And then abandoned and neglected. It is the orignal bridge to nowhere. It is in poor condition and needs to be removed.

However, my land slopes up to the top of the bridge where I leveled an area for a small stone terrace and buit a"secret garden" that is partially, somewhat mysteriously, hidden from view of the rest of the property and is nonetheless enticing for it. It is enshrouded with lush vegetation including six mature coconut palms. There is always a breeze in this shaded haven and therefore a perfect place to meditate or counsel another as both Jeff and I have done at times. It is guarded by a four foot, beautifully weathered statue of Francis of Assisi which I bought in 1982 and kept in my Boston garden as a memorial to my mother who had just died from the same cancer I have.

During the week I was so sick I was informed by the State Flood Control Department that they were removing the bridge next week and excavating all the land coming into my property for thirty feet! That would entirely destroy the garden including ALL the trees and replace it with a downward sloping bank composed of "rip-rap" which I understand in this case to be bags of cement. So my property would no longer culminate in an exquisitely lush garden but in a gully of cement bags. And the soul of this wondrously sacred place would be ruthlessly extinquished. In many ways the horror of this plan is too much for me to bear with what I am dealing with on my plate already. The very thing that I use to support me in remaining positive through this health ordeal is being utterly destroyed by
an unnecessary and insensitive plan designed by perfectly decent people who have no regard for the impact upon me at all. And given the current economic debacle, I have no means in any way to restore what is being destroyed. Dealing with this in my current condition is easily the most distressing challenge of my life.

And deal with it I must. And I will. I have begun by asking my friend, George, who was one of my original partners in Treetops many years ago and has just moved here full time, to partner me in negotiating with Flood Control. I know that I am not at the top of my game and that I need assistance in anticipating and understanding all the implications of what Flood Control intends to do. He readily agreed to help me do that and to try and negotiate a more palatable solution to their current plan. I am very, very grateful to him. My intention is to approach this entire matter from a positive, non-adversarial perspective. It is not that the other, darker side does not live within me as well, I just refuse to give it a voice. I am intending to preserve something profoundly sacred so I will not use profane means to accomplish my task. There are no bad people here just a very, very, ill-considered plan.

The boys across the river have begun their volleyball practice. They are very disciplined and very serious. There is never any shouting and all one ever hears is the twack of the ball. I have come to love this sound and the youthful exuberance it represents. But now I have to leave the peace and delight of this riverside perch and prepare for my Spa Day to continue the chemotherapy and accupuncture of this cycle.

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.

UNDER THE RAINBOW

Tonight there was a double rainbow in the distance. The first was a perfect arc. It was quite beautiful to behold. And whether or not it has anything at all to do with good luck that is how I hold it tonight. It was as if a shield of good fortune for me as the second day of my chemotherapy came to a close. NO NAUSEA! In fact I feel very little other than some familiar side-effects from the steroids. For example, for some inexplicable reason I get the hiccups on the day following the ingestion of the steroids but at no other time.

Immediately following the infusion of the Velcade I felt good enough to drive the twenty minutes to my accupuncturist in Boca Raton. I hold Leslie McNight with the same profound love and respect that I do Dr. Elizabeth Trice, my oncology fellow in Boston. Both are utterly thorough in their unique practice of medicine, both are completely responsive, and both are warmly relational. (For example, after I emailed her that I was anxious about beginning this new course of chemo in Florida without her, Elizabeth replied: "I will be keeping you in my heart and mind, Gary". Know what I mean?) I am so grateful for the gift they are to me and to the world.

Despite the energy of the steroids which I had just taken I fell asleep on the table. When I left the office the rain had stopped and the sun had come out and I felt wonderful. I drove home without the old post-operation hesitancy; just zipping along the highway listening to music. It wasn't until I found myself dancing to Barry White at the wheel at a stop light that I remembered the "roids". I'm sure I was amusing to the passengers in the surrounding cars.

Incidentally, when Jeff and I met with Dr Seigel's warm and informative nurse, Debbie, on Thursday she showed us the infusion room and I smiled broadly and said: "This is wonderful!" She looked at me puzzled and asked why I said that. I just pointed at Jeff who replied correctly: "The light". The entire room consists of individual recliner stations where the infusions are administered. The room is painted a very comfortable pink/beige color and is built around a glass enclosed garden open to the sky. It is pleasantly unhospital-like. So that's all I know at this point in time. I don't know what will happen as I continue the chemo cycle but I am hopeful and positive. And I am very grateful for the ease of this beginning.

HOME SWEET 'n SOUR HOME


I have been home for three days now and it is wonderful! All my concerns about magical thinking and idealizing my home were unfounded. I absolutely love being here. I am never cold!!! It rains part of each day but the rest is truly beautiful. It is the kind of warm that can be too hot if you remain in the direct sun too long but becomes very comfortable as soon as you step into the shade. And I so appreciate seeing bright blue sky every day. Jeffrey took great care of the plants and flowers on my terrace garden (the only place I can have flowers since the iguanas eat the flowers and tender shoots everywhere else!). This is a container garden that I planned while sick in bed up north two years ago. So my heart sang when I returned and saw the beauty of it all in full flower.

However, all is not perfect here on Paradise Point. Tomorrow I will go to the hospital and begin the new course of chemotherapy called Velcade. I just read about it online and the long, long list of side-effects included, much to my horror, nausea and vomiting and extreme fatigue which I doubt has become as popular as extreme ironing and is equally appalling to me! As much as I tell myself that these are only possibilities, I think the nausea thing is a sure bet. And that scares me. Big time!

It feels so perverse to realize, as I sit here feeling perfectly normal and actually really good listening to the sounds of the spring birds and glancing up to see the waning light on the placid river, that tomorrow I will voluntarily allow my body to be ravaged by chemicals designed to kill. And among other things what will be killed is this delightful sense of feeling really good. How badly I will feel I don't know. Nor do I know for how long. Tonight I feel a bit like I imagine soldiers must feel the night before a battle. Maybe this is what is meant by "battling cancer". I have resisted the idea that I am at war within my own body, but tonight I am afraid of this unpleasant but inevitable unknown. And so, for the first time, but I suspect not the last, I look out at the river-reflected sunset and silently echo Jesus in Gethsemane:" Father, if it be your will, let this cup pass from me."

I'M HEADING HOME!


I leave Boston at 6:50 PM on this Sunday and arrive in Fort Lauderdale at 10:00 PM.

After what felt like endless negotiations and scheduling, my oncology fellow, Dr Elizabeth Trice, was able to arrange for me to begin a new course of chemotherapy at Holy Cross Hospital at the end of my street. Such is the weird nature of my world that I am all but gleeful at this turn of events. While I may have wished that my last MRI was clear; it was not. There was evidence of some myeloma cells on my pelvis and therefore I need to be treated again.

The new treatment is called Velcade and the protocol consists of two IV infusions at the hospital two days per week and then skipping a week. The good news is that I can do this while living at home and it is not processed through my kidneys, thus sparing them any more deterioration. The bad news is....well, we'll just have to see what side-effects accompany this life-preserving treatment.

I have had great difficulty sleeping the past three nights and for the first time during this journey I have been truly frightened. But I am not certain exactly of what. Perhaps it's just the unknown of this treatment. I sometimes think it's part of magical thinking surrounding my return; ie: once I'm home everything will be alright. Or it may simply be an underlying feeling of "enough, already!" Whatever it is, I am both sober and very, very grateful to be returning to my home, my dog, and my community...and walking (with crutches, for now)

BE IT EVER SO HUMBLE...

Yes, this is my Boston "home". No, I'm not kidding. In fact my room is the window on the second floor to the extreme right. It has a breathtaking view of the spacious lawn.

The "back yard"

The windows on the left on the first level are to the indoor swimming pool and the bank of windows above are to the kitchen, the warmest and most used room in this magnificent house. Among other things Frank is an excellent cook! This is his house. He is a self-made man who owns several companies, a Pilatus and a Citation jet both of which he flies, and he is a very supportive and generous friend. There are many people in Boston and Fort Lauderdale who have supported me in numerous ways during the difficulties of this physical journey but he is the one who has consistently provided the meta-support that has made my recovery work here possible. I can't imagine how much more difficult it all would have been without his contextual support.

********************

This house was designed by Robert Stearns , one of America's foremost architects. It is the most architectually flawless building I have ever experienced. If God is in the details then this is heaven. Nevertheless, it doesn't prevent me from whining. There are mornings when the ten-year-old inside me makes me quite nuts with his relentless insistence that we go home. I am exhausted from the past few weeks of operation, recovery, physical therapy, spot radiation, CT scans, and MRIs, doctors' appointments and walking on crutches. Help! Beam me up, down, sideways, anywhere but here, Scotty!

This is the current situation. I did not keep my flight to Florida on Friday at the request of my oncologist. Instead I had an MRI of my pelvis because of its proximity to my hip and femur where the cancer was doing its nasty little work, and an MRI of my elbow where I occasionally experience some pain. I will learn the results on Monday or Tuesday.

The problem is that for the past few years we have used monthly blood tests as an early warning system to keep tabs on the myeloma cells and to stay ahead of the cancer. This system obviously failed to warn us of the activity of the cancer in my femur and I came dangerously close to a fracture which is serious with this type of cancer. So now these MRIs will help serve as a baseline to measure future activity but mostly I will have to be aware, responsible, and not paranoid about any future pains anywhere in my 64 year old body so I can check them out for myeloma. And my second trick will be....

If the two recent MRIs return clear of cancer I hope to board the first available plane home. If cancer is present I will begin one or both treatments. The first would be more radiation which can take a week or two, and I may be able to do that in Florida. The second is a new chemotherapy which would consist of two IV shots per week given in a hospital and that I would definitely do at Holy Cross in Florida. The benefit of that treatment is that it is not processed through the kidneys therefore avoiding any further deterioration of my kidney functioning.

In conversation with Jeffrey yesterday morning we both realized that despite the sometimes overwhelming number of parameters, overall most of the information was positive. My heart and kidneys remain remarkably stable and even if the myeloma is active there does not appear to be any crisis. Of course, this could all turn on a dime. But couldn't anything?

My current intention is to leave Boston on Wednesday or Thursday. However, just remember that I have never been driving this bus!

SMILING


I am simultaneously bored and busy. I think the boredom is really a result of being away from my home and the place and things that I love for one full month now. Or perhaps it is because I have been far more receptive than creative during this time. The busyness usually consists of lunch plans if I don't have some medical appointment.

Last Friday I was x-rayed and tattooed (which is how they "target" the radiation) in preparation for radiation this Thursday. I was told that while I would probably be tired as a result of the radiation I would not be too tired to go to lunch afterward. That's good. Priorities are priorities, after all! That night I went out to dinner with friends to Benardi's, an exquisite northern Italian restaurant in Cambridge. I was very, very grateful for every little aspect of the experience.

The following day my longtime friend and mentor, Sarah, drove me to Newburyport to attend Lucille's memorial service. As with her effervescent life, Lucille did not want a somber or traditional funeral. And it wasn't, thanks to Jeff's informal eulogy. He skillfully wrapped her entire life in the smile she bestowed upon everyone wherever she went. It was a generous and loving tribute to a strong and relentlessly positive woman.

Soon after I sat down in the funeral home, a lovely blond lady came and sat next to me. Her smile lit the room, the town, the universe for all I know! It is always astonishing to me to once again realize how truly loving relationships simply do not change. They are immutable. Period.

Neither discord nor distance seem capable of diminishing true relationships of the heart. You may be thinking of exceptions but I would suggest that despite the nature of the relationship it was not truly of the heart. Of course, as improbable as it may seem, I could be wrong!

In this instance, however, I am not wrong. As she had done innumerable times in the past twenty-five years, when I was first diagnosed she gave me the wise and wonderful benefit of her own experience. She told me that people would tend to respond to me in one of three ways. They would disappear altogether, they would be awkward and not know what to say or do, or they would know exactly what to say and do. She said regardless of the response it meant nothing and then cautioned me not to judge them. This advice remained extraordinarily helpful as I worked my way through recovery.

Now here she was sitting next to me smiling after almost two years of not seeing each other or even talking in well over a year. For no good reason. The not talking, that is. Smiling together with nothing in the way. Smiling in the knowledge of the hearts that grow and the relationship that continues to thrive. Smiling.

Perhaps in some inexplicable way it was Lucille's final smile.

TALES OF A SIXTY-FOUR YEAR OLD TWELVE YEAR OLD

Or How I Survived The Truck Wrench


Today was a most eventful day.
I had had a fitful night's sleep last night because I kept waking due to the cold. The temperature dropped 30 degrees last night! And I was anxious about having my surgical staples removed this morning by the visiting nurse. Brusque would be the polite adjective to describe this nurse. Now admittedly I am beyond squeamish. I never even looked at the staples these past two weeks so I couldn't imagine being present when they were removed. I called the surgeon's secretary first thing this morning to see if there was any other way of removing the staples than to await the arrival of The Nurse and her truck wrench. The secretary told me she'd get back to me. At this moment in walks The Nurse and her double riveted tool box! So like some schoolboy in a prep school film I lowered my pants and presented my twelve-year-old bum to The Nurse! And you know the rest. Out came the staples with, at worst, a slight stinging sensation. On came my pants completely disguising the baby that I be and once again I appeared to the world like a mature adult. Later this afternoon the physician's assistant called to find out if the staples had been removed...and if The Nurse had indeed brought her truck wrench. I cracked up!

So this baby-disguised-as-adult lived through the staples and , if not a lollipop, received a bouquet of red heart-shaped balloons from Sharon, my angel of healing. The balloons form a somewhat passionate canopy over my bed.( Hmmm,
this is not the first erotic awareness that I've had since returning from the dark recesses of anesthesia.)

This afternoon my niece, Tamara, arrived to show me the new car she bought yesterday. It was exactly what she wanted at exactly the price she wanted to pay. I was delighted at her clear and determined success. She is twenty-one, going to school, working, and living on her own. Oh yes, did I mention strong willed and beautiful. Tamara and I have no blood relationship. And yet she was born in my home, has been an integral part of my life and my heart since that day, and "uncle/niece" are the only terms that even approximate the depth and enduring nature of our relationship. Perhaps the most comforting thought I have when I consider the possibility of my death is that Tamara will be alright. As close as we are, as important as I have been to her, as much as I know she will miss me, I also know what a strong person she is and that no matter what she will continue to thrive. We both know that I have made an enormous difference in her life but not by way of helping to form her character but in supporting that character, that individuality, that unique personality to flourish as unimpeded as possible. I am very, very proud of her.

I'm certain that it is obvious from the tone of my writing that I have emerged from the dark valley of recovery. I still have pain and use crutches to walk but I don't take pain killers and I can now see daily improvement. I will continue with physical therapy to recover the mobility that I temporarily lost. I have yet to drive but I do look forward to going to lunch everyday...ANYWHERE! And next Thursday I will begin 5 days of spot radiation aimed at eliminating the myeloma cells that created this leg problem in the first place. So, yeah, I realize that I've still got some work to do here and I'm ever hopeful that we can do it. Nevertheless, today I felt like I turned another corner; unlike the past month or so, today I no longer feel like a sick person.

Just a gimp.

PHASE ONE HAS BEEN SUCCESSFULLY COMPLETED


I returned to Frank's house on Tuesday at 3PM. Frank wasn't here; he was at Elton John's final Las Vegas concert and farewell dinner. Fortunately, Roberto had flown up here on Sunday to assist me. I really was/am clueless about what would be required. I have friends here who are willing to assist me but I haven't even known what to ask for.

I am tired, really, really tired all day. When I try to read the paper I don't get through a single paragraph without my eyes closing. So I nap a lot whether I want to or not. I have begun working with a physical therapist and a visiting nurse and doing exercizes to enable me to have more flexible movement. It is fairly painful.

On Monday, I will meet with the radiation clinic. I am expecting to spend two weeks doing spot radiation on my left leg to hopefully eliminate the myeloma cells. I had hoped to return to Florida and do the radiation there but my oncologist wants me to remain in Boston so he can monitor any complications.

As Jeff wrote earlier, I am unquestionably grateful for all the people who have helped me to get to this point even if I am too spaced out most of the time to fully appreciate it. I so look forward to the time when I am clear-headed and independently mobile again!

Gary's Surgery Update...

Hello everyone…  

Gary asked if I would give you a quick update on the results of his surgery.  His operation was a complete success!  The day after he was feeling an abundance of gratitude!  He told me that even though he felt extremely tired he wanted to stay awake and take it all in.  He was loving all the activity and liveliness around him.  He was feeling very happy to be alive!  I can tell you that as of today he is ready to leave and I believe his wish came true.  He is either being discharged this evening or tomorrow morning.  You can expect an update from him in the near future.  Until then…

 Blessing,

Jeff Corbett 

NEW PLAN

This afternoon Dr Ready's secretary called me to tell me that the surgery has been rescheduled once again. It is now going to occur on this Friday, April 17th at 1:00PM.

I am happy about this change because as much as I may wish the operation was unnecessary I recognize that it is necessary and therefore let's get on with it. I am having difficulty falling asleep at night and I feel rather down during the day. I am also tired all the time. Using crutches is a complete drag and certainly requires extra exertion. But I fear the fatigue is related to the presence of the cancer so the sooner we can get through the operation and begin radiation the better. My intention is to return to my home by the river as soon as possible. I have to, my dog, Lucky, is waiting for me.

GREMLINS, COCONUTS, AND OLD FRIENDS

My operation has been postponed until next Wednesday, April 22nd, at 9:30AM. There was a mix-up in my medication and I was unable to have the operation tomorrow. I need to be free of blood thinners for a week before surgery. I was told this afternoon that the next available surgical appointment will be the following Wednesday. I was not happy. I have been waiting, somewhat on edge, for ten days and another week of hanging about and walking on crutches is discouraging.

And because I'm feeling sorry for myself I'm going to take this opportunity to step from behind the screen. I don't consciously hide my feelings but I am aware that the darker side doesn't get readily revealed because I do engage in a conscious practice of changing my negative thoughts as soon as I can. But I certainly have negative thoughts and negative emotions as well. They most frequently come as I retire at the end of the day. Like some creepy little night-crawling gremlins who live under my bed they clutch at my feet and keep reminding me that I'm no longer like other people. What I am sensing is the numbness that results from the chemo-induced neuropathy that worsens with fatigue. What I am thinking is how the neuropathy is such an annoying, if bearable, and utterly reliable reminder of the myeloma that lies hidden in the darkest recesses of my body. And what I am feeling ranges from mild frustration to a much deeper sadness resulting from the awareness that I will never again know the light-hearted freedom and easy movement of one who has unfettered access to good health. These are not the only times when I may be assailed with such victim-like thoughts and feelings but they are the most frequent.

Indulging in these negative thoughts is akin to paddling a canoe upstream; a very difficult task depending upon the current. However, by merely lifting your paddle out of the water, the current will effortlessly turn the canoe about and it will be carried downstream with no exertion whatsoever! I often use something beautiful in nature to remind me to lift my paddle out of the water. For instance, I will focus my attention on a particular tree, on the way the sunlight falls across a lawn, or on the caress of the breeze on my arm. Once I allow myself to give my attention to some burst of natural beauty it is easier to release the loop of negative thoughts and the painful emotions that follow. Sometimes television, music, or movement serves the same function. My favorite cognitive redirection is water; either a swim or a strong shower, especially if it is in my outdoor shower where I can see the open sky while the water does its magic.

You see, that is the only magic I know. I have no hint of denial about the diseases that afflict my body. Each of them is life-threatening; that is: one of them will most likely be fatal. Death (I avoid the euphemism of "passing away". We would not say:"Empty the vase the flowers have passed on." or "The old oak tree in the back yard passed away last winter." We avoid the word like a child avoids looking under his bed at night lest he confirm the presence of monsters he fears reside there. Death. Say it aloud and it begins to lose its fearsomeness), so as I was saying, death from any of these diseases could be hideous but I have no way of knowing how I shall die. So why would I spend one second of my precious life ruminating about which form my eventual death will take?! It will come as it comes. And, please God, I will be as present as possible to that transition however it comes.

Now you may have heard that more people die from being hit on the head by falling coconuts than by shark attacks. I love that factoid. Think of the panic aroused on a beach should someone yell:"shark!" - but who's afraid of falling coconuts? As you might notice from the sunset photo at the top of the blog, the river bordering my garden is lined with coconut trees. Who knows, some evening as I sit placidly watching the sunset sipping a cocktail and bemoaning the gremlins grasping at my feet I may be taken out by a coconut!

Tonight Frank brought home Chinese take-out. I swear to you that I found the following fortune in the only cookie I opened:

Look up an old friend
if you're feeling down

So I did.