Cancer: a love story

A Celebration to remember Gary

noreply@blogger.com (Javier) — Tue, 14 Sep 2010 11:44:00 +0000

Please join us as we gather to remember Gary.

This Sunday, September 19th at Noon.

321 Heath Street, Brookline, MA 02467

Map below.

Parking is available along Singletree and Cabot Streets, as well as the driveway leading to the house.

You are invited to bring photos, mementos or any other remembrance of Gary you would like to share.

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noreply@blogger.com (Gary) — Sun, 06 Jun 2010 17:51:00 +0000

THE BONE MARROW EXAM

I finally received a call from my oncologist at Dana Farber in Boston telling me that the results of the bone marrow exam had arrived. Much to my astonishment he told me they could find nothing in my marrow; no myeloma cells, nothing. I didn't know what to say or have any questions to ask. He told me that the myeloma wasn't gone because it showed up in the blood test but he didn't think I needed to resume chemotherapy for the next few months and that we would just keep monitoring the blood test each month. This is great news. It took me a while to adjust to the reality of this news, perhaps because I am so tired so much of the time.

Now that cancer seems to be off the table for now at least, I am going to focus upon my kidneys. That is probably the source of the fatigue. They are at 13% functioning which puts them in stage 5 of kidney failure (there is no stage 6). I believe I have two possible symptoms of failure: fatigue and a truly annoying body itch. I will see a dermatologist tomorrow and see if he confirms the itch as related to the kidneys. Either way I am going to proceed upon any alternative treatment I can find to preserve my remaining kidney functioning. Western medicine has nothing but dialysis which I would like to postpone as long as possible. So it goes.

In one of my recent writings I mentioned Spirit, and a friend I know through my African work wrote to tell me he thought that was the only time I have ever mentioned Spirit. I think the reason for that is that I have been confused for some time. I was raised a devout Catholic but have spent most of my adult life not practicing Catholicism. Instead I dabbled in other New Age or non-sectarian churches but mostly doing nothing. And then several months ago I felt compelled to return to Catholicism. Given what has been going on in the Catholic church in the past several years the timing has felt really weird. However when I was in Church it was a deeply emotional experience something I never felt in any other church. I resonated with the central Eucharistic ritual of the Mass. But little else. I would look around and not see anything in the congregation that reflected my reality. I didn't know if this attraction was merely some childhood conditioning popping up at the last minute. I was truly confused.

Then a friend, after a few minutes of teasing me about returning to the Church, told me of going to see the Dalai Lama who told of having a long-time disciple who came to him in the final stages of her life and told him she couldn't follow him anymore and when asked why, she said she was returning to the Church. His response was: "Of course you are, this is in your DNA, it is where life originated for you and now you are returning home." I immediately felt an end to my confusion. My resolution, at least for now, is to go to three churches. I go to a very small ECC catholic church (like Anglican; not Roman Catholic) for the sense of small community, to Unity church for the energy, accepting congregation and how they think about life, and to a Roman catholic church for a deeper spiritual connection.

So this as well as reading a difficult but truly inspiring book about Greek Orthodox monks who practice a theology untouched by the outside world for the past 900 years and significantly different from western Christianity has had a profound impact upon me. I am much more at peace with myself and the present circumstances of my life.

I was born a Catholic and will die a Catholic. I am not Protestant, New Age, African or Buddhist and yet I continue to learn much from the Spirit that lies at the core of all of them. Recently Rachel Maddow asked Sinead O'Connor who had written a scathing public letter to the Pope, how she felt about the Church now. O'Connor replied that" We are the Church. These old men have stolen it from us and created this mess. It is time for them to retire and give it back to the people. I love the church. I love the Holy Spirit" (paraphrased). The truth as only the Irish can express it. Amen, sister, amen!

noreply@blogger.com (Gary) — Mon, 17 May 2010 14:31:00 +0000

I'M BACK!

Some time ago a close friend of mine said about me:"You're constitutionally attuned to look for the silver lining even in the midst of a mess." I laughed in agreement because I recognized the truth of that for most of my life including the years of these illnesses. However, as you know from previous entries, it has definitely not been true for the past several weeks. Then yesterday I returned to taking the dexamethasone, the steroids, and I felt like I had returned to myself. In addition to that I had a good seven to seven and a half hours sleep with minimum medication. I was up by 7:30 and went for a mile and a half walk. I am delighted!

I have just returned from a week in Boston where I saw all my specialists and some of my friends. It was a very busy week. I was still not in very good shape, mostly very tired. I had a bone marrow test that was not very painful and the results of which I will learn later this week. My cardiologist visit went well with me dropping two heaving medications I've taken for seven years. And the kidney appointment was spent mostly discussing peritoneal dialysis since I am at 13% kidney functioning and dialysis usually starts about 10%. But then the nephrologist said that he saw a patient that day who was at 5% and still going strong. And I thought: "That would be me!"(As long as I can maintain my positive mood and attitude)

Speaking of positive moods, I was recently thrilled to hear from my former teacher and current friend, Malidoma Some, that he had read my blog while he was in Bobo, Burkina Faso in West Africa. I had spent part of four different years there with him before I was diagnosed and social conditions are rudimentary, to say the least. Malidoma is a shaman who brings the spiritual knowledge and ritual practices of his native Africa to the United States and Europe. I met him many years ago at a workshop in Cambridge, Mass and then again in a year-long training in African rituals that we did in the Berkshire Mountains in Massachusetts. I am also pleased to know that the blog is read by a friend in Ireland. It is just nice to know about this global readership but the truth is that I am deeply gratified to know that people anywhere do read what I write and find inspiration, amusement, or comfort in my words. I love to receive emails that inform me of people's reactions; it is a central part of the Love in Cancer; A Love Story.

noreply@blogger.com (Gary) — Sat, 01 May 2010 18:26:00 +0000

GOOD AND NOT SO GOOD

It has been almost a month now since my Florida oncologist told me to stop taking the chemotherapy including the steroids because my platelets have declined and are not increasing. Unfortunately, I think he made a mistake in not counseling me to wean myself off the steroids in some slow fashion. I say this because ever since I stopped the chemo (especially the steroids) I have struggled with an intense mood disorder. It began as an acute depression but in the past week I have felt an intense anxiety from morning until night. Fortunately my sleep has not been disturbed but my days have been truly abominable. I have known situational anxiety from time to time but nothing as painful as this chronic anxiety.

My mood is generally flat and I worry about all sorts of "what if" problems; and I am unable to change my fear-based thinking no matter how unreasonable it is. I am so not myself. For the three years of this cancer I have been able to maintain, or at least return to, an overall positive attitude. That eludes me in this state. I have started taking Xanax and that helps a bit but not completely. I have an appointment with a psychiatrist next week who is experienced with oncology and I am hoping that he will be helpful. A close therapist friend had similarly excruciating symptoms as my own but once taking the anti-depressant, Lexipro, has had complete relief. We'll see what the psychiatrist says. I want my positive self back as I need every bit of positive energy and attitude as I can get! And yet, of course, I am not wild about adding more heavy-duty medication to that which I already take. This is just another dilemma that comes with this challenging journey.

So that's the not-so-good; that which I would very much like to eliminate completely from my life. But there has been a positive side. Some of my anxiety has focused upon money and the excessive credit debt I recently allowed to build up. The anxiety has served as a wake-up call for me and today I have begun a self-designed program to pay off the balances on my cards before I commit to another purchase or project. My intention is to do this in a determined but light-hearted way. I don't want it to be grim, just effective. I am doing it because I live on a fixed income and I have no idea how long it will need to last. It certainly doesn't look like I'm going to croak anytime soon so I have to be responsible where lately I've been slack. As someone said:"The point is to bounce your last check!" However, that requires a prescience I don't seem to have. I felt a lot more financially secure when I thought I wasn't going to live very long. Now I'm not so sure.

One of the things that frustrates me is that I have been working since I was eleven years old and my former identity is that of one who can always make money and take care of my financial obligations. Well that is no more. I continue to see three clients but I am unable to work much more. Thus in the depths of my anxiety I began to fear about losing my income and my house. Well on my walk this morning I had this clear and strong energy sweep over me and then had the thought that Spirit brought me this house and no one was going to take it away. It was not arrogance but the kind of intuitive knowing that has been my strongest guide throughout my life and especially during the years of my acute illness. So perhaps my true self is re-emerging and my positive attitude and gratitude will once again dispel the senseless fear. That certainly is my intention.

noreply@blogger.com (Gary) — Tue, 06 Apr 2010 20:23:00 +0000

EASTER 2010; THE LOOK OF ILLNESS

This Easter I was invited to a small dinner party in a rather small condo. Jeff decided to change the location of the dinner to our house and as a result the guest list grew to a total of about twenty-five people all who participated in making it happen. This resulted in a literal feast of more delicious food than we could possibly eat and desserts that were truly extraordinary. In addition guests arranged to color Easter eggs and conduct an egg hunt. All of which was great fun on a day that was impeccably warm, sunny, and bright.

But what was most interesting to me was the Friday prior to Easter I had delivered a huge, new sub-zero refrigerator. When they removed the old built-in refrigerator we discovered that the back of the wall was covered in black mold so that the new refrigerator was unable to be installed. In fact I had to hire a contractor to come the following day to remove the rear wall and prepare an opening for the new refrigerator to be installed. However, the installers were unable to do that until today, four days later. Consequently the refrigerator was left standing proudly in the center of the kitchen next to a gaping hole where it would eventually reside. Additionally there was no furniture in the recently renovated dining room so we set up an old table in the center of the room as a serving table and used the kitchen island for preparation. It is fortunate that there are so many places on my property which allow for people to gather in small groups to mingle and eat.

But I learned an important lesson from this affair and that was that nothing, virtually nothing, is essential other than good people and strong intention! The party, the entire day, was thoroughly enjoyed by everyone present including the hosts who might well have been forgiven had they been hassled by the logistical breakdowns. But no one was hassled and everyone enjoyed the event completely. Aside from the beauty and ease of a fully completed kitchen, absolutely nothing was necessary to add to the success of the party itself. Once again it brought home to me that circumstances occur to us but they do not have to determine our reality. That which determines our reality is where we focus our attention and literally what we say about the circumstances that are occurring. I cannot sufficiently stress the importance of this to me at this point. There is no other explanation of how I can live with these multiple diseases and the losses that I have incurred as a result of this illness and still maintain a desire to be alive and to pursue beauty and joy in every day of my life.

In reflecting upon the current state of my health I think in terms of a roller coaster of "okay". I am okay; some days I am more okay than others but I have no truly bad days and while I do have some truly good days I tend to forget those in the face of the prevailing mediocrity of most days. All I know is that the chemotherapy appears to be working and the cancer is not active. I don't believe that this is considered remission as I am dependent upon the chemotherapy to maintain the status quo, and yet because the side effects of the chemotherapy are tolerable, if annoying, I am content.

This does not mean that I do not miss much of what I have lost in my life that I have loved. The onslaught of chemicals which keep me alive have done so at the expense of all erotic feelings. And I miss walking: on the beach, for exercise, for long conversations with cherished friends, and travel. Most of the travel that I have enjoyed around this extraordinary world has involved walking or hiking. This is a loss to me and one I feel acutely.

In truth it is bittersweet because just as the neuropathy prevents me from walking any distance, I am still able to walk some distance even if uncomfortably so. I am deeply grateful to be able to move independently from place to place. I can no longer walk my three mile route about my neighborhood but I can make it up and back the block two or three times. And in case you have wondered, Jeff does ALL of the work involved in creating the social events that we host. But feel what I may I help to hold the vision and I attend with as much presence as I am able to muster.
I have found that absolutely everything,everything is attitude! And we as a species are nothing if not adaptable.

noreply@blogger.com (Gary) — Sat, 03 Apr 2010 16:34:00 +0000

RENOVATING WHAT I CAN

I recently had a conversation with a friend about renovating my kitchen. The wooden floor was badly worn and as such things do, the idea of replacing the floor led to a series of other related projects to update my twenty-year old kitchen from its teal and white dated monotony to something more contemporary. He was opposed to the entire idea and questioned why I would want to involve myself in such a project. He asked me that if I knew I only had six months to live would I want to be spending my time at this point rehabbing my kitchen. It was a useful, if harsh, question. And one with which I actively engaged without resentment.

I find the time reference to be irrelevant in that I have no information that would place a time stamp upon just how much time I have left to live. I have lived well beyond one official pronouncement and I have no desire to engage another until my death is imminent. So that said, I return to the question of do I want to do this project? With considerable reflection I determined that the point is not whether or not I have a refreshed kitchen but that one of the most significant aspects of my aliveness is creating possibility wherever I see it. I love doing projects. Or more precisely, I love designing projects (to be done by others for the most part. Let's be real!) I especially love designing projects that will both enhance aesthetics and functionality. I am also aware that on some unconscious level I know that I can do very little about my disease-ravaged body, but I can still give my kitchen a much needed face-lift!

Identifying this led me to identify those aspects of my life that I found most rewarding and life-giving. What exactly did I do that made my life worth living at this point? What gave me meaning and joy? I arrived at four essential activities: the creation of projects like renovating my kitchen; writing, as in this blog and perhaps beyond; generative conversations that are laced with humor and transforming insight; and the ongoing maintenance of my health through medication and medical appointments.

I am very grateful to be able to continue these activities and I derive real joy from them. Not always, of course, there are times when I am frustrated and irritated by each but that too is an essential part of being alive even when I prefer it not to be. Without those times there would be no challenge and we wouldn't be be truly alive; which, after all, is the entire point!

noreply@blogger.com (Gary) — Tue, 02 Mar 2010 16:19:00 +0000

YES. IT DOES HAVE TO HAPPEN ALL AT ONCE!

I don't know why it does but it just seems to happen that way so there is nothing to do but deal with it. Prioritize as best as you can and then deal. I have been feeling increasingly amounts of fatigue four days out of seven without being sure of the source since I have so many reasons to experience fatigue. Last week I saw my Florida nephrologist who always seems bemused by me as he says: "I don't suppose you're ready to come in and get your dialysis port, are you?" And I laugh as I say: "No!" I have thirteen percent kidney functioning remaining but I am hanging onto that remainder for dear life. But for the first time I began to question myself and wonder if I was being stupid...or maybe frightened.

The doctor thinks that the fatigue may well be a function of the kidney deterioration and I began to question that if he were right perhaps the effects of the fatigue is too high a price to pay for resisting dialysis. However, I don't have other significant symptoms of kidney failure like vomiting or itching which I would hate. So I spent the week talking with friends, thinking about what to do, and planning on returning to Boston to talk with my specialists there. The dialysis I plan on doing is Peritoneal Dialysis which is self administered while you sleep. Fun, huh? And you have no idea how squeamish I am. But I understand PD is more convenient, effective, and overall effective so I will just have to do it. Just deal with it. But you can understand how I might be reluctant to begin the entire process.

And, oh, did I mention that a routine visit to the dermatologist revealed that I have some skin cancer on my face. Apparently, the origin has nothing to do with this Florida sun but began in my childhood. I get to deal with that tomorrow.

And now my dog, Lucky, has become increasingly aggressive in his defensiveness. He has bitten two friends and menaced two others over the weekend. Yeah, this past weekend. You know the one where I was struggling to determine whether or not I needed to begin dialysis? Why now? Do I really need to deal with this now? Well yes, I do. I can't actually put any of it off. I can't afford to allow myself to become too sick before I commence dialysis and I will not have a dog who, while most of the time has the sweetest, most gentle nature, erratically bites people.

My priority yesterday was to call the veterinarian but before I could my Florida oncologist phoned to tell me that the cancer markers had fallen from 7 three months ago to 6 last month and had just fallen again to 3 - all a very positive sign that the chemotherapy is working effectively. However, what is not so positive is the fact that he believes I will have to be maintained on this chemotherapy. I'd rather not but under the circumstances I will just have to deal with what is. But then he told me I was very anemic and arranged for me to receive a six-hour double blood transfusion which I am doing as I write this posting. Now this has given me hope that the transfusion will do much to allay my fatigue and I can continue to postpone consideration of dialysis. Dealing doesn't always have to mean doing!

In the meantime, the vet called and we will begin Lucky, who is both anxious and co-dependent, (go figure) on anti-anxiety medicine and some behavioral modification. For example, sleeping with one of us makes him more co-dependent and less independent, as does sleeping on the furniture. Sleeping on the floor makes him more independent and self-reliant. This explains why when he is secure around us everything is fine but if he is startled by the unexpected presence of some new, less bonded person he becomes insecure and his defense becomes aggressive even though he has never been an aggressive dog. More with which to deal.

And deal I do. And will, as each challenge arises. It often appears that it is all too much or at least would be much more manageable if these things came one at a time but they frequently don't. And yet, with a bit of organization and prioritization, things get handled one way or the other. And if you look closely in the rearview mirror the road is strewn with the debris of past challenges with which we have had to deal ...but few catastrophes!

noreply@blogger.com (Gary) — Tue, 23 Feb 2010 19:55:00 +0000

THE BEAUTY OF STEROIDS

The last posting I did that spoke of the in-between place I wrote while in that unpleasant space where all I felt like doing was whining. Today I thought I would write from a different place altogether. It is the nature of my chemotherapy that I take five steroid pills called dexemethesone once each week. All I know is that they somehow enhance the chemotherapy which I also take in pill form but on a daily basis. One of the effects of the steroids is that I am given a boost of energy that I can only describe as making me feel more like my "normal" self. I am more energized, motivated, and gregarious than I feel on the non-steroid days.

I have chosen to take the steroids on Sunday mornings so that becomes my social day. Given my increased energy I am enthusiastic about spending time with people and doing "normal" things. The community cookouts are one of those things and the reason I chose Sundays to take the steroids. Next month we will begin our third year of monthly community cookouts which attract anywhere from fifty to one hundred and twenty people. We have over five hundred on the invitation list. It was our intention to use these cookouts as a vehicle to generate community where people could meet, connect, and communicate - without a dependence upon sex, drugs or alcohol. And we have been successful; all through unexpressed intention. People bring all the food; most of it homemade and whatever alcohol or non-alcohol drinks they choose. I know of only one couple who met here five months ago but I know scores of people who have met and become friends. I am happy to assist cupid but happier still to facilitate real community!

Following Sundays I have planned Mondays to accomplish those tasks and projects that I find more difficult to do as I begin the process of coming down from the steroids which starts to occur on Tuesday afternoons. By Wednesday, and through Friday I feel generally crappy; which is-to-say: tired, unmotivated, and somewhat withdrawn. Saturday is better and then the whole process begins anew on Sunday. The cycle itself is rather wearisome but I am very grateful for my steroid days. The biggest problem I have with this cycle is my persistent fantasy that how I feel on steroid days is my entire reality rather than only part of it. I find it very difficult to include in my thinking that I ride this wave every week with very little change and virtually no relationship to external circumstances. But that's just the way it is and while it could be better, it's truly not so bad......of course, it's still only Tuesday!

noreply@blogger.com (Gary) — Fri, 19 Feb 2010 22:45:00 +0000

THIS IN-BETWEEN PLACE

This morning it was 55 degrees in the Olympic city of Vancouver....and 50 degrees in Fort Lauderdale, Florida. I recognize that given the horrendously cold temperatures with which the north has had to contend I can expect little sympathy for my lamentations about the cold. Nevertheless, I insist upon persisting to lament these unacceptable temperatures. Yes, fifty is not fifteen but Fort Lauderdale is not Des Moines. I choose to live in Florida in order to be able to sit writing this blog outside by the river. Fifty is in-between fifteen and eighty (my preferred temperature). I don't like the in-between. It is neither one nor the other.

Similarly, the status of my health is in-between truly sick and truly healthy. It is often what I would term truly crappy! I am okay. I certainly don't feel well; or good. But on the other hand, I don't really feel sick or bad. Instead, I often feel tired, lethargic, unmotivated, and, yes, whiny! Oh boy, can I feel whiny! And it is so uncool to feel, forget sound, whiny! I don't want to be around me when I am whiny so why would anyone else want to be around when I'm whiny. But to be perfectly honest it seems to me to be the background noise of the in-between place. I didn't design it to be this way; I'm just noticing that this is the way it seems to be.

Nor am I suggesting that there is nothing that I can do about it; that I am a helpless victim of this whining syndrome. I know there are things that I can do rather than yield to this unpleasant whining. All of them are contained in the decision to re-focus my attention to something else; something that is not in-between two other things. All I have to do is focus my ever wandering attention upon something that I want or something that pleases me. I know that I can do that. I can do it at any time.

But sometimes it just seems like I'd rather whine.

noreply@blogger.com (Gary) — Wed, 03 Feb 2010 19:18:00 +0000

AND THE UNIVERSE SINGS "HAPPY BIRTHDAY!"

My 65th birthday was this past Saturday, January 30, 2010. I had been fairly anemic for the past several weeks so when Jeff asked me what I wanted to do for my birthday I wasn't very enthusiastic and left it up to him to plan something small and casual for the birthday afternoon. That enabled him to plan the following surprise for the previous Sunday. On a birthday surprise scale of 1-10, it was a 15!

My friends, John and Joyce, who were visiting me from Troy, NY were alone with me at my house. John received a telephone call which I assumed was from his daughter. A few minutes later he called me to :"come and see this thing" in my front yard. I ambled out to the front yard grumbling about why he wouldn't just tell me what it was he wanted me to see. (I assumed it was yet another giant iguana which I see on a daily basis) He obstinately kept heading for the street repeating:"You've gotta see this" but without so much as a hint as to what it might be. And then when I made it to the street this is what I saw...and heard:

Please make sure the volumne is turned up on your computer and then click on the arrows in the middle of the photos. This will start a brief movie of my birthday celebration.

When I finally realized that the chaos that was occurring at the end of my street was actually a parade of thirty-seven of my friends marching toward me wearing funny hats, carrying balloons, and blowing an array of noisemakers I started to laugh with all the glee of a six year old! It was pure Fellini! The circus was coming to visit me at my home! I don't think I have ever before experienced such laughter and joy!

And then everyone poured inside and we had an extraordinarily festive birthday celebration for the rest of the day and evening, filled with laughter, good food, and fun interaction.

Somewhere, sometime during the evening I became aware in my heart that these people were no longer simply a group of good friends... but my family! This is important because I have a family of friends mostly concentrated in the North but I no longer want to live there; I want to live here in Florida. And yet, should I become really sick I want to be surrounded by friends. Now I know that I am. I have a wonderful family here and an even larger, magnificently extended family throughout the Northeast and beyond. Even though my blood family consists solely of one brother, who has re-entered my life in a profound way, I delight in the most abundant family one can imagine.

Unpleasantness still comes my way on a regular basis but I am being completely truthful when I tell you that I don't think I have ever been happier.

What a parade, huh?!

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

noreply@blogger.com (Gary) — Mon, 04 Jan 2010 01:33:00 +0000

HAPPY TWENTY-TEN!

I am so happy to begin this new year, 2010. First of all, it is so much easier and pleasant sounding to be able to say twenty-ten than two thousand nine! So after the personal and political struggles of '09, I appreciate beginning this new year and new decade with pleasantness and ease. It is my heartfelt intention that they remain that way. Secondly, after writing about my salmonella-poop horror stories, I remain at heart an optimist and so I'm still looking for that pony in this new year!

And I am cautiously optimistic about a new discovery. But first: the last blood tests indicate that the cancer is not active, under control, or whatever. So that is baseline good news for this month. Now, I have never liked oxycodone so I suggested to Dr Seigle (my Florida oncologist) that he give me the three-dayFentanyl patch for pain. And to my surprise he did. I wanted it to see if it would help with the pain and discomfort of the neuropathy which I think is getting worse.

It does seem to lessen the discomfort and pain of the neuropathy but in a subtle way. However, I discovered that I must have been in more overall body pain than I realized because now I feel much better. I am more active and motivated to do things and have less need to be sitting and resting all the time. Because it wasn't acute pain, I associated what I was feeling with fatigue rather than pain but it seems it was both. I sleep more, which is okay with me, otherwise I notice no adverse side-effects. This past week has been for me the most pleasant, comfortable, and normal week in a very long time. (could my pony turn out to be an opiate???)

The holidays were quietly enjoyable for me. A Bostonian at heart, I have difficulty relating to jingle bells surrounded by palm trees and impatiens. The most ubiquitous outdoor Christmas decorations down here are the huge inflatable images of Santa etc. Problem is what goes up must come down, so as I drive down the street I see what appears to be melted globs of plastic hanging from rooftops and draped over shrubbery! Truly absurd.

Christmas Eve a friend and I watched the HBO Wanda Sykes comedy concert and , truly, laughed for two full hours. It was the best! The next day a small group of us had a Jewish Christmas: dinner in a Chinese restaurant and a movie ("Nine" - also wonderful - to see Sophia Loren in full presence at 75 or 80 is worth the ticket alone!) New Year's Eve I had dinner with seven other Bostonians at a friend's condo and that was thoroughly enjoyable. At ten the others were going downstairs to a fireworks cocktail party, but when I checked in with my energy level I found it plummeting so we called a cab. Ten o'clock New Year's right? The doorman told us he'd been trying to get through to the taxi company for forty minutes. But just as a bit of anxiety was setting in (the others had been drinking and didn't want to drive on New Year's) my friend reached the cab company and was told there was a cab in the area and if I got out onto the street I could get it. We went flying down the stairs and burst out of a side utility door to avoid others waiting at the front entrance just as the cab was coming up the street. I felt like Cinderella. Bob hailed the cab, I jumped in, and was in my bed twenty minutes later. As it should be. Going out at night is relatively new for me, remains infrequent, and definitely ends by ten o'clock. Hey, it beats not being able to go out at all. I'll deal with the old geezer self-image later!

Twenty-ten has certainly had an easy and pleasant beginning. Sweet.

noreply@blogger.com (Gary) — Mon, 21 Dec 2009 01:38:00 +0000

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.

noreply@blogger.com (Gary) — Tue, 01 Dec 2009 22:44:00 +0000

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!

noreply@blogger.com (Gary) — Fri, 09 Oct 2009 13:22:00 +0000

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.

noreply@blogger.com (Gary) — Wed, 30 Sep 2009 11:21:00 +0000

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.

noreply@blogger.com (Gary) — Tue, 22 Sep 2009 22:52:00 +0000

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.

noreply@blogger.com (Gary) — Thu, 27 Aug 2009 12:50:00 +0000

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?

noreply@blogger.com (Gary) — Thu, 20 Aug 2009 02:01:00 +0000

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.

noreply@blogger.com (Gary) — Mon, 17 Aug 2009 15:27:00 +0000

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!

noreply@blogger.com (Gary) — Tue, 04 Aug 2009 19:14:00 +0000

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!

noreply@blogger.com (Gary) — Mon, 20 Jul 2009 22:14:00 +0000

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.

noreply@blogger.com (Gary) — Mon, 13 Jul 2009 11:25:00 +0000

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.

noreply@blogger.com (Gary) — Sat, 27 Jun 2009 07:56:00 +0000

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.

noreply@blogger.com (Gary) — Tue, 23 Jun 2009 19:31:00 +0000

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.

noreply@blogger.com (Gary) — Sat, 13 Jun 2009 16:24:00 +0000

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.