A Celebration to remember Gary

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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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!

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.

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.

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.

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!

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!

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!

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.

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?!

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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.