TALES OF A SIXTY-FOUR YEAR OLD TWELVE YEAR OLD

Or How I Survived The Truck Wrench


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

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

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

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

Just a gimp.

PHASE ONE HAS BEEN SUCCESSFULLY COMPLETED


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

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

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

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

Gary's Surgery Update...

Hello everyone…  

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

 Blessing,

Jeff Corbett 

NEW PLAN

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

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

GREMLINS, COCONUTS, AND OLD FRIENDS

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

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

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

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

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

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

Look up an old friend
if you're feeling down

So I did.

In Case You Thought I Was Delusional:


http://video.google.com/videosearch?client=firefox-a&rls=org.mozilla:en-US:official&channel=s&hl=en&q=extreme ironing&

:-)

EXTREME IRONING

I spent most of yesterday in the hospital. I met with Dr Ready in Dana Farber Cancer Institute in the morning where he showed me the results of the CT Scan on the office monitor. It was fascinating. So much so that I seemed to be distracted from identifying with the leg on the screen. (Was this an episode of "House"?) I was able to clearly see the cancer tumor as well as where it had compromised the perimeter of my femur. There is no question that I need to have a titanium rod surgically installed into the core of the bone in order to reinforce my leg and avoid accidental fractures. Yeah.

This will be accomplished in a 1 1/2 hour operation next Wednesday afternoon. I expect to remain in the hospital for two-three days and then spend two weeks on crutches. After that, Dr Ready informed me, I should hopefully return to normal functioning. "Could we discuss 'hopefully'?" I asked the good doctor hopefully. He then reminded me that there are no guarantees. Damn! But of course the adult of me knows there aren't. For one thing, there are the creepy little cancer cells to deal with. The operation is fairly mechanical. Radiation is far more magical. I will require two weeks of outpatient spot radiation of my leg following the operation. As yet I don't know whether that will be done here or back in Florida. I prefer to go home but will gladly defer to the wisdom of my oncologist, Robert Schlossman and his Fellow, Elizabeth Trice. I find enormous comfort in knowing that these two brilliant doctors have my back!

Speaking of brilliant doctors, I request that before you go to sleep tonight you thank the Universe for all those nerdy little geeks in high school biology who have or will grow up to be fascinated by the study of blood and other such cancers. When I was first diagnosed I googled multiple myeloma and read about a quarter of what I found. I had two very profound reactions. The first was acute depression. The second was the astounding realization that although with some twenty years of formal education and possessing a fairly competent grasp of the English language, I understood virtually nothing of what I was reading. It was at that point that my heart filled with enormous gratitude that there were men and women who not only understood this complex data but delighted in the inquiry of it all. Thank you. Thank you. Thank you.

All of this aside, there are two things of real importance that I learned yesterday. First, I am shrinking, for godsakes! The nurse measured me at 5'7 1/2". Appalled, I demanded a re-measure! This time I stood consciously erect. "Okay, 5'8","she announced. I have been 5'9 1/2" for over half a century before the myeloma got me and now: Look! Another existential choice: death by cancer or hanging out with Snow White!

The second important thing I learned when the Pre-Op nurse left the office and I distractedly observed the photo on her wall calendar. Disbelieving my eyes I went right up to it and saw that it indeed was a photo of a man in a suit ironing his suit jacket on a mountain peak in Austria. There was no logo or other identifying information to explain this inexplicable image. Curious, I began leafing through the images for the other months of the year. They all consisted of men ironing clothes in the most bizarre outdoor locations: amidst the crashing surf of Big Sur, atop various mountains, and the annual winner who ironed on a board attached to his waist as he hung from a zipline strung between two cliffs! Now I had to remove the calendar from the wall; and having done so, discovered on the back that someone in England invented the "sport" of Extreme Ironing in 1997! UmmHmm! That's right: Extreme Ironing.

Who knew?! I love discovering this kind of shit. It's one of the reasons why I love living so much, shrinking or not.

HELEN KELLER, YOU ARE MY HERO!


LIFE IS EITHER A DARING ADVENTURE,
OR IT IS NOTHING AT ALL.
helen keller



On Monday I saw Dr Ready, the very competent and very personable orthopedic surgeon who specializes in bone cancer. I woke for the second consecutive morning at 3:30 AM unable to return to sleep. That morning I was furious with the boy who cuts my lawn in Florida until I realized the absurdity of that and looked a bit deeper to unearth, as it were, the first real, intense, not-to-be-denied fear that I have experienced about this trip to Boston. It didn't last long but it certainly made its presence known.

Two days earlier, as I sat with Jeff in my favorite spot by the river, I told him that I felt like I had somehow numbed out. And that I wanted to peel apart layers of me to find some authentic core of me. I did not believe that it was possible for me to go about preparing my house and legal responsibilities in such a calm and efficient manner. Two years ago when I journeyed north to address the then undiagnosed pains, I lay severely ill in my friend's bed for seven months. I was preparing for any eventuality but feeling very little.

I did feel love and gratitude from and for my friends but even that was thinly veiled. Sharon Gless had brought a stone crab lunch from Miami for Jeff, Steven and me and that was fun. As was a cocktail gathering of friends who came to meet Sharon and say good-bye to me. I appreciated everyone. It was somehow me that I was missing.

Javier Cortez accompanied me to the Ready appointment which was inconclusive. I was scheduled for a CT Scan later in the afternoon so Javier and I went to a french cafe for brunch. It was during our conversation that I realized that the only difference between the tragedy and the adventure of my current experience was what I said about it! People seek out challenging adventures all the time. Those who run the Boston Marathon experience a plethora of difficulties, pain, and discouraging emotions and they choose it year after year. As do people who climb Everest, or carry babies, or start businesses. All choice. All adventures. I saw then that what I need to do is consciously choose this experience and the tragic recedes as even this part of my life becomes an adventure.

The full moon is shining into my window as I write this at the desk in "my" suite in Frank's mansion. Thank you.Tonight he made my favorite meal for dinner: grilled filet mignon and mashed potatoes followed by organic chocolate ice cream.Thank you. Tomorrow morning I see Dr Ready.Thank you.

My intention is that the cancer has not affected the perimeter of my femur and that I will then proceed with two weeks of spot radiation. However, if the perimeter has been affected I will have an operation to install a piece of titanium rebar in the center of my leg bone to reinforce it and then I will be radiated. By that time I should be fairly bionic.

I will know tomorrow...




GOOD NIGHT, LUCILLE

Jeff Hull just called to tell me that his mother, Lucille, died of metastasized cancer this afternoon.

Lucille was an inspiration to me. She was diagnosed with lung cancer about eight years ago and was not expected to live very long. And yet lived she did. Until very recently, she was still making new, younger friends, and going out to lunch every day. While she clearly adored Jeff she never prevailed upon him to alter his life to accomodate hers. Her attitude was contagious. Two years ago she visited Florida with Jeff and attended my birthday party until fairly late into the evening. The next day we were on the beach and I remarked on her positive attitude. She laughed it off telling me that I should see her in the morning but fortunately only her poor dog was there to listen to her complain. That she so assiduously refrained from allowing the complaints of her pain to fall upon others was her great, enduring gift. I will not forget her.

May her couageous spirit be received with Honor in the next world.