UNDER THE RAINBOW

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

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

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

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

HOME SWEET 'n SOUR HOME


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

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

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

I'M HEADING HOME!


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

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

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

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

BE IT EVER SO HUMBLE...

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

The "back yard"

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

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

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

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

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

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

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

SMILING


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

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

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

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

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

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

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

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