WHAT I'M READING: "Out There: A Story of Ultra-Recovery"

Dave Clark is an amazing man.  Have you ever tried to lose a massive amount of weight?  Have you ever [or been close to someone who ever] kicked years of alcohol addiction?  Now imagine doing both of these things AND going on to run marathons!  David Clark did all three.  This book is nothing short of incredible.  David Clark was not only a successful businessman and entrepreneur, but also a loving family-man.  But he shows how easily addiction can lead a person who seems to have everything to bankruptcy and ruin.

What struck me about this story is the raw and uncensored narration of what got him to that spot of "rock-bottom".  Coming from an Irish-American family, he had alcohol around him from childhood at all family celebrations.  He also relates a young life of instability at the hands of a father who was forever chasing his fortune and the next best thing.  Eventually, his father's quest for an elusive American dream led David and his family to nightmare.  Whether it was an inherited addiction to an adrenaline rush or a sincere goal of providing his own family with the stability he never had,  Dave soon gets caught up in a spiral of wanting more than he already has, coupled with some bad luck and an alcohol-fueled drive to overshoot his bounds.  Overconsumption and poor nutrition leads to obesity and it all comes crashing down on Dave.

Clark decides from his place on the floor, to stop the drinking and get sober and healthy.  He finally gets through that first of the 12 steps -- to admit he had a problem and surrender to his powerlessness.  He only goes up from there; his mantra is "marathon" and he begins to run.  Nowhere does Dave blame anyone except himself for his downfall.  Sure, while he's drinking, he's in denial -- like all alcoholics -- saying things like "I'm Irish" or "I need a drink just to relax", but when he finally hits his bottom and decides to change for good, he knows he got himself into his mess and it's up to him to get himself out.

I am totally in awe of this guy who stops drinking on his own and puts in the work necessary to stay sober and get slim.  Those are amazing feats for sure; but then to become a marathon runner is icing on the cake.  If you want to get the "Wow" that I did,  from reading David Clarke's raw and honest story of rehabilitation, reflection and redemption, follow the link on the side of this blog to purchase "Out There: A Story of Ultra-Recovery"  from Amazon.

Why the TV Show "Speechless" is Important to Me and Should Be for Everyone -- Disabled or Not

WHAT I'M WATCHING:    "SPEECHLESS"  [ABC TV NETWORK]

People With Disabilities (PWDs) are the last marginalized people to gain respect.  We have made so many inroads in the developed, industrialized world with race, religion and sexual orientation and identification.  Many people and legislators still wish to lock us up in institutions and keep us out of sight .  Although there has been great progress in enabling PWDs to live in the community, we still have a long way to go.  If I didn't navigate the system the way I did, and push for transition to a self-directed care model [Concepts of Independence in my case], I would otherwise be living in an institution or getting care through an agency.  An agency controls everything -- when and where you can go-- and if you can go -- outside the home, and even whom they send to care for you [in some cases, with very little input from PWD or family]

"Speechless" is so important to me because it not only features an actor who really has a disability and shows that "speechless" is not synonymous with "infantile". The show also deals with the concept of "inclusion".  When I became disabled in January, 2004, I was shut out of activities by many able-bodied people, sometimes by inaccessibility of venues or lack of accessible transportation, but often by well-meaning "friends" who thought I would be uncomfortable around "normal" people.  Sometimes I am invited, only to be invisible-- left out of the conversation or even ignored or stuck in a corner by myself.  This show should be watched by everyone, especially by misguided people who have told me "Maybe there's a group or club you can join that's more for people 'like you' " [this was actually said to me more than once].  Get out of your comfort zone -- watch it; it's actually funny.  I give you permission to laugh.

"Speechless" features a family with an adolescent with Cerebral Palsy. There's a mouthy mom-- Maya Dimeo, who is a flawless advocate and played brilliantly by Minnie Driver.  She is the perfect advocate for JJ, even pointing out when well-meaning gestures are insulting.  In the first episode, she asks for a ramp so JJ can get into his school and she goes on a rant when she is led to a ramp which also doubles as a trash conduit.  I can relate to this, since often when I ask for a ramp, I am led to a rear door alongside trash and service entrances.  In my own residential building, I haven't seen my lobby in at least 10 years; I have to enter and exit through the basement.  Especially in older buildings that have been retrofitted, we are segregated.

I love when my caregivers and friends speak up for me in the face of injustice.  Despite my inability to express myself clearly at the moment of impact, I have learned the fine art of patience and diplomacy in protesting after-the-fact.  I write letters and emails, and make relay calls.  I used to shoot off my mouth at the moment of the injustice.  That proved to be ineffective at times and even counter-productive, since tempers are often high at that minute and I tended to say harsh things I sometimes later regretted.  Also, sometimes the person you yell at, isn't the one who can make a change and sometimes is a lower-level worker who isn't very educated in discussing protests in a civil way, especially in the middle of his workday.  And even more likely, as in the recent case of a friend arguing with a paratransit driver, you find yourself in debate with a recent immigrant whose English language skills are not the best and/or can't or won't take direction from a woman.  

But in "Speechless", Minnie Driver is a funny angry person and shows how we can laugh at a life that can also be referred to as a tragedy.

Book Review: "Life Through Lasagna Eyes: The Recipes for Life" by Samantha Kendall

There can be no greater loss than for a mother to bury a child.  And I think there can be no pain greater in losing a child, than losing a child to a senseless act like shooting.  Reading Samantha Kendall's book, "Life Through Lasagna Eyes: The Recipes for Life", I couldn't help thinking about all the senseless gun violence in the United States today.  When I picked up this book, my first thought was dread, in anticipation of a narrative of one more news story. But Samantha Kendall handles her telling of an unspeakably sad event with dignity, strength and even humor.

Although Ms. Kendall dedicates her book to victims of gun violence, she doesn't make "Life Through Lasagna Eyes" only about her pain and suffering.  Instead, it is the backdrop for a bigger message: to use her passion to honor her daughter's memory and become a successful entrepreneur. The most valuable lesson of her book is how Samantha found meaning in what was a meaningless tragedy.

She is now known in Chicago as the "Lasagna Lady" and followed a message uttered by her daughter Amanda from her hospital bed before she passed away.  Amanda loved her mom's lasagna, and so it was through her lasagna that Samantha drew inspiration to work out and work through the incredible grief of losing her child to violence.  The pasta that form the layers of the lasagna represent the layers of our lives; the cheese symbolizes the substance that holds the layers together; the sauce is the topping that completes the lasagna before baking and eating, and of course there is the all-important meat.  Samantha's faith and her passion for cooking turned tragedy into triumph.

Mourning the End of Summer: Sand in My Shoes

 My late mom's favorite season was Autumn; unfortunately, I never shared that sentiment.  I have always had sand in my shoes.  I was born in Brooklyn, and both of my parents grew up on Coney Island.  I was taken to Coney Island in the summer to join my extended family -- mostly from my Dad's side [my maternal relatives are Austrian with fair skin and prone to sunburn] but sometimes we would be joined by my mom's Coppertone-slathering, umbrella-sheltered family.  Somewhere in my dad's house are black-and-white childhood photos of me in a one-piece on a beach blanket and home movies converted to a cassette[sadly VCR -- not yet put on DVD] of an iconic 50s me with white ice cream from a melting pop dripping down my face, and a confused "I can't lick fast enough; what am I gonna do?" look of total perplexion on my face.

Later, when we moved from Bensonhurst to Sheepshead Bay in Brooklyn, and my paternal grandparents moved to the Nostrand Projects right on the next block from the Sheepshead Houses [an adjoining NYCHA "project"], we frequented quieter Manhattan Beach.  Manhattan Beach wasn't in Manhattan; it was on the same strip of Atlantic Ocean as Coney Island to the east.  It was quieter and wasn't "bad" like Coney Island was starting to become.  "Bad" was another way of saying that there were increasing numbers of people of color -- African-Americans and Puerto Ricans [back then, anybody who spoke Spanish was Puerto Rican]. 

When I was 11, we moved to Long Beach, Long Island and my fate was sealed-- I would forever have sand in my shoes.  I studied for my end-of-year New York State Regents exams in the sun on a beach blanket.  My teenage years were filled with beach bonfires and all kinds of beach parties.  I told my mom I wanted to one day have a wedding on the beach with all the guests in flip-flops; she replied that I was a crazy hippie.  When I was deciding on a town in France to spend a summer studying and perfecting my French, it's no accident that I chose Boulogne-sur-Mer on the English Channel, where I attended classes in the morning and headed for the beach every afternoon.  My foray into living out of state was a four-year stint in Los Angeles, never far from a beach.

Lately, my beach stomping-grounds has become Rockaway, Queens, New York.  A once-bustling, then-crumbling stretch of the Atlantic which is part of the New York City beaches.  Rockaway is reachable by subway and MTA bus, and -- like all the city beaches-- free to visit.  An interesting thing happened after Superstorm Sandy; Rockaway experienced a revival of sorts, largely thanks to a huge contingent of young hipster artsy types from Brooklyn and Manhattan.  

                                                    My favorite Rockaway "poison" -- a Michelada which is a Modelo
                                                                Mexican beer with lime, clam juice and tomato juice in a glass rimmed
                                                                 with coarse salt and spices.  On the plate is ceviche [raw fish "cooked"
                                                     in lime] over a disc of quinoa




We accidentally discovered 97th Street after I read an article online about fish tacos being sold near the Rockaway boardwalk, and immediately was brought back to fish tacos I lunched on every day on a trip to Ixtapa, Mexico in the late 1990s.  I dragged my friend Louise one afternoon on a mission to Rockaway Tacos and discovered our new beach obsession.  That was late July, 2014 and we went back every weekend for the remainder of that summer.  And during Summer, 2015.  This 2016 summer, I was robbed of my July, dealing with my endoscopies and belly-hole issues when it was tough to leave the house.  The 97th Street boardwalk has become my second home, along with the Low Tide Bar and all the various food concessions that serve up everything from ceviche [fish cooked in lime] and pierogies to BBQ pulled pork and veggie juices.  And the most wonderful thing is the beach "mats" they lay down so that wheelchairs can go partially on the sand.  And I read [although sadly I don't have anyone willing and able to help me], that you can rent beach wheelchairs [with big wheels] that someone can push me in, on the actal sand and in the water.  Yes, I need someone young and/or strong who is willing to help me rent this and push me. 

I am dreaming of a permanent or even semi-permanent [summer] home/rental in the Rockaways.  I am determined to make something like that happen.  For right now, I am mourning the summer and trying to make my fall and winter productive enough to make some dreams come true for next year. In the meantime, let's hope for no broken bones, nor belly holes spouting stomach acid or half-digested food. 

Followup on Views About Assisted Suicide and End of Summer

So I posted the story on Facebook that I talked about in the last blog update. To recap: A woman with ALS threw a big [arty for 30-some-odd of her closest friends and then went through a doctor-assisted suicide [which was recently legalized in California].  Granted, she was a performance-artist and it's not clear from the article which abilities she had lost.  I'm sure if she lost use of her hands, she probably didn't see the use in going on.  I could count a hundred-and-one things I had to give up when I got this disease.  Anyway, it's a controversial issue among the disability community.  But I can't go into that.  But what I can attest to, are the commentas on my Facebook posting.  This is in an atmosphere of full-disclosure because everyone knew that I posted it, and they knew my situation.  Most people thought the woman in the article was brave to do what she did.  A very old friend of mine commented with food for thought: he said that good friends should be around the person with the disease all throughout, and not just show up to party with her to say thei goodbyes.  I agree with him, but on the other hand, at least they partied with her while she was still alive and not just show up to cry about how much they will miss her when she's gone.  Another old friend expressed in so many words that I was "brave" for going on and fighting, but she would have wanted to die.  In other words, I wa shocked at how many people basically feel that they would rather be dead than in my situation.  Which leaves me very grateful that -- despite all the pain I have been through -- I have managed to find joy in a world of ABILITIES, rather than buy into helplessness.  I know I have some people around me that have bought into my perceiveed in-abilities; the invitations don't come anymore and the attempts to socialize have all but disappeared except for a few exceptional people.  There are discomfiting looks when I mention traveling and sex, even though disabled people travel all the time, and even have sex.  I have re-connected with a gentleman from my past to whom I am extremely attracted; the looks on friends' faces when I mention this, show their awkwardness.  One friend said she didn't want me to "get hurt".  Was she so concerned when I was able-bodied?  If anything, I am so much stronger emotionally than I ever was in my former life.  Another friend says she "censors" her talk because she doesn't want me to hear about anything happy in her lefe; other friends tell me that they don't want to tell me about thir probems, so as not to "burden" me.  This last subject was another way to see how other peoples' minds work, and I must say I am sad for them and I hope they never have to deal with half of what I do.  I realize how many people around me are weak and even ignorant.  Society has to do a better job of preparing people to deal with people like me,  Just sayin' 'Nuff said.

Anyway, the end of summer has set in, even though I will continue to go to Rockaway Beach as many weekend days as possible through September.  We don't even have to go into the water, or even on the sand; we just bring reading material.  Our base has become Beach 97th Street on the newly-rebuilt boardwalk.  Rockaway took quite a hit in Superstorm Sand, as did my hometown of Long Beach.  Both towns have rebuilt their boardwalks, which were destroyed.  Long Beach's boardwalk was reconstructed by funds raised largely by hometown boy Billy Crystal [the comedian/actor -- he was a baseball star at my school who graduated the year before I entered high school -- his older brother Joel was my middle-school art teacher]  Rockaway is a New York City beach.  For those of you who have never been to New York City, we have beautiful city beaches along the Atlantic Ocean, and they are all free. These boardwalks are more like cement-walks now -- the old wooden boards are replaced by more sturdy material that will be better able to withstand bad storms.  In the Long Beach Library, I was always mesmerriaed by photos of the old boardwalk constuction in the early 20th eentury, especially the pre-PETA photos of the use of elephants to transport the heave wood boards.

Rockaway has gone through a resurgence of sorts.  Once a burgeoning vacation community in the late 19th century and early-to-mid-1900s, it fell into ruin and decay by the late 1960s.  Rockaway Playland Amusement Park closed in the 1970s and the ummer bungalowa were rented out year-round to very poor families.  Most of the other families were blue-collar workers of Irish descent; in fact, Rockaway families suffered many lossses during the 9/11 attacks because there was suck a large concenetration of police and firefighter first responders.

 In the top photo, you can see ceviche [raw fish "cooked" ibn lime] on a disk of quinoa with seasonings.  Very delicious and healthy.  In the cup is a drink called "Michelada".   This is a popular drink at Mexican resorts.  They rim the cup with sea-salt and hot pepper and pour in tomato and clam juice.  They then pour in about 1/2 a can of Modelo beer and you just keep pouring in the rest of the beer as you drink down.  It's delicious and refreshing and also has plenty of ice.  It's kind of like a beer version of a Bloody Mary.

I am not clear about when Roclaway suddenly became cool and hip, but I suspect that Superstorm Sandy had something to do with it.  One summer afternoon last July, Louise and i saw an article online about a place specializing in fish tacos and decided to check it out.  For some reason, that part of the boardwalk was intact so we wandered on.  Once on the boardwalk, we discovered an additional structure of food outlets and they were serving up cuisine beyone hotdogs and burgers and fries.  There was a juice bar, several outlets serving up cevicjhe [fish cooked in lime -- Latinos' answer to sushi], BBQ and other delicacies.  The people hanging out there seemed to be young hipsters and their babies.  There was an eclectic blend of music playing and we felt very much at home.  It was already the end of July and we made a point of going there every Saturday through to the end of September.  I havd always had sand in my shoes and live for Summer.  Rockaway has become my second home in the summer.  I'm a sucker for the salt air and the sound of crashing waves,  I've had many kisses on the beach; it is the stuff of all my dreams.  I always dreamed of getting married on the beach, nd refuse to let go of that dream.  I see a lot of raised eyebrows and hear a lot of tooth-sucking in pity.  Nobody wants to see me "get hurt".  I can still fall in love and I can even have sex, although my partner would have to be patient with helping me move my body into position.  I'm not ready for assisted suicide as long as there are beaches.

Woman With ALS Throws Celebration Before Doctor-Assisted Suicide in Califiornia

A number of people have forwarded this article and video to me  
Anyway, let me summarize:

A 41-year-old performance artist with ALS/MND/Lou Gehrig's Disease for roughly three years, invited her closest friends -- 30 or so -- to a party celebrating her life.  She was up front about the fact that after the party, she was going to be one of the first people to take advantage of the passage of California's assisted-suicide law.  California now joins Oregon in allowing doctor-assisted suicide.

Betsy Davis -- the woman in the article -- looked vibrant and still beautiful.  Who knows how much longer she would have had if she didn't die when she did?   I thought of where my head was at,  three years after diagnosis, and I was pretty despairing myself.  My disease had progressed pretty fast in the first few years.  I am not sure which abilities Betsy had lost before her death; certainly as an artist, the loss of use of her hands would have been terrible.  I am blessed with the ability to use my hands, which enables me to use the computer, if not,  keeping me from dropping a lot of things.  At three years into diagnosis, a doctor had estimated that I had 12-18 months left; 9 years later, I am still here.  Obviously, my doctor was wrong; at the rate of deterioration at the time [November, 2007], he figured the downfall would be at a steady rate.  Who knew my progression would slow down almost to a standstill?  I have been very lucky.  If I chose doctor-assisted suicide at that point,  I would have missed at least 9 more years of life, along with America's first African-American president, possibly the first woman president, TV shows like "Breaking Bad", the iPhone, the iPad, and a whole virtual world of ordering food, shopping and speaking to friends all over the world online.

And then there is that word -- "suffering" -- which has been repeated a few times in the article.  Enemies of doctor-assisted end-of-life decisions argue that suffering is a relative term.  Am I suffering?  The short answer is yes -- sometimes.  Did I suffer before ALS -- I would have to answer a louder and more resounding yes.  I despaired after broken relationships, broken bones, lost employment, deaths of loved ones.  I could think of a hundred times I woke up after a night of insomnia and questioned if I had the strength to go on.  I received a horrible diagnosis 12.5 years ago; I was basically told I was going to die.  If New York had a law legalizing doctor-assisted suicide, I could have ended it right then.  I could move to California or Oregon and do it right now.  I choose not to -- right now.  I can't speak for anyone else.

Without getting into religious beliefs, we all have choices.  Who knows how I would feel if I were in physical pain, or my disease were causing pain to a spouse and children?  I once knew  a woman with ALS who prayed to God to hasten her demise because each month in the nursing home was eating up $13,000 of her grandchildren's inheritance and she had neglected to set up some kind of trust for them. Or if I didn't have medical insurance?  Some might say that I am bleeding Medicare unnecessarily and that I am one of those who are causing Medicare to run out of funds.  I welcome them to dig up 30 years of pay stubs to add up the colossal sums taken out of my checks every two weeks, especially when I worked overtime in my airline career. They are entitled to think any way they want because they don't walk in my shoes or roll in my wheelchair.  

Once when I was about one year into ALS and still driving and walking with a cane, a close friend was relating a story about someone she knew who had died in an auto accident.  She said it was just as well that her friend had died because the doctors said he probably would never have walked again if he had lived.  "Better dead than confined to a wheelchair" she added.  I cringed because I knew sooner or later I would be reliant on a wheelchair myself.  Does she think I am better off dead now?  I don't know; I don't think so.  If I reminded her of what she said that day, I'm sure it would embarrass her.  Who knows if I would have agreed with her a decade before?  We all live in our own little worlds and sometimes never imagine what could happen.  When we think we could never go on, we do.  Ronald Reagan was aganst stem-cell research so I'm told.  Many years later, his wife Nancy testified before Congress that stem-cell research should be ramped up to help people with Alzheimer's -- like her husband Ronnie.

My party of goodbyes has happened more gradually over 12 1/2 years.  In the early stages, I had visits from friends who promised to come see me again and never did; this was their way of saying goodbye.  I had friends and family who came by often and stopped,  either because they couldn't handle my situation anymore, or more often because of their own life changes -- marriage, babies, relocation.  And I am thankful for some people I would never have met and gotten close to,  if I hadn't had ALS, and for the people who stuck by me all the way.  It's true that in times of difficulty, you find out who your solid friends are.  I had hundreds of people in my life because of my two careers and my volunteer activities.  By necessity, I have weeded out a lot of toxic people.  I don't need a party and for now I choose to hang out a while longer.  

Probably the most important reason I continue to thrive is my care.  I not only still live by myself in my own apartment but I am able to hire, fire and schedule my own personal assistants through a system called "CDPAP -- Consumer-Directed Personal Assistant Program" which in New York City is administered largely by Concepts of Independence, but there are versions of CD-PAP all throughout the state of New York and in some other states as well.  This not only keeps me out of a nursing home, but relieves me of the constraints imposed by many home-care agencies -- like sending strange aides at their whim and even restricting how far away from home they are allowed to go with their consumers [patients].  I have had the same four aides for a decade or more and they are like family to me.  They cover for each other in case of illnesses, vacations and emergencies.  If not for CDPAP, I am sure I would feel differently about my situation and the will to go on.

Endoscopic Procedures #2, #3 amd #4,Trying to seal my abdominal PEG site fistula, and a saga to try my sanity

So I would like to say that my first endoscopic procedure on June 30 to stitch up the fistula left by my PEG removal, was a success. I would like to add that six weeks of disgusting and smelly emanations had finally come to an end, and I could start the enjoyment of my favorite season of the year.  But, if you read the title of this entry, you already know that I can't say any of those things,  and so, by July 2,  I was once again a very unhappy camper.  Oh sure, I was doing the "happy dance" until about the morning of July 2, when I realized that the oozing site was more than just a healing process.  I emailed both of the GI doctors in despair.  I had no intention of repeating the uncomfortable experience again.  My throat was sore from having a tube going down it,  into my belly.   And contrary to the anesthesiologist's promise that I probably would remember little to nothing that happened on that table,  I remembered everything.

So I was not thrilled a few days after the first endoscopic procedure, to be headed for a repeat.  Once again, I was promised that they would make me "as comfortable as possible" and I wouldn't remember.  So, imagine my disappointment when I was awake again, and remembered that this time, a slightly wider tube was shoved down my throat.   When I came home, my throat hurt as much as my 1986 bout with strep,  during which I went through every flavor of Ben and Jerry's ice cream: from Chocolate Chip Cookie Dough and Cherry Garcia to Chunky Monkey. I suffered through two full days of excruciating throat pain, but thought it was worth it if my stomach leak would finally stop.  Well, after two days, the throat pain subsided, but the leak resumed.  The doctor had told me she sewed extra and stronger stitches, and she was sure this would "do the trick"

So, with the misery of endoscopy #2 fresh in my mind, I bravely agreed to endoscopic procedure #3.  I figured if I had survived the first two, I could survive a third.  I joked to one of the nurses that there should be "frequent endoscopy" points that I could redeem for a free stay, and I told the doctor that perhaps we should pitch a reality show, or create a franchise like The Hunger Games or Star Wars.  She assured me that this time, she would use a special clip and of course, even more and stronger stitches than the first two times.  This time, I was given more sedation, and was told the tube going down my throat would be smaller and wouldn't hurt my throat as much as the time before, and the time before that.  I didn't remember as much of the procedure as the previous two times, but I did remember being instructed to swallow the special clip, which I did with a huge gulp. 

The doctor was confident that the third time was the charm.  And it was -- for two days.  So we could be doubly sure the stitches would hold,  this time I stayed on clear liquids for the rest of that day and liquids the whole next day.  After a 2-day fast, my body was not good at accepting solid food again and the third evening,  I had to have chicken broth, because my guts were in an uproar after a smoothie for lunch.  Before long,  I was going through a box of gauze sponges every two days and canceling dinner plans I had already postponed a couple of times.  There was no way I could leave the house; within hours of changing a dressing, we had to change the gauze and tape again.  My skin was raw from the tape until I ordered a special product for sensitive skin. Interestingly, for the third endoscopy, I was fairly sedated and, although I remembered most of this procedure -- including the doctor putting a clip in my mouth and asking me to swallow it down the tube -- my throat didn't hurt as much after this round as after #1 and #2.

So, having not been as traumatized after #3,  I was ready for #4.  But this time, I was told the two GI docs were putting their heads together and "thinking outside the box".  Uh-oh,  I thought,  now we're getting creative!!  The next day I was presented with two possible "solutions".  One was a cardiac device used to repair holes in hearts. The other was to put in a small tube and top it with a "Mic-key button".  Both devices would have something showing on the surface of my belly;  the cardiac device would be flatter,  and the Mic-key would have a piece protruding about 1cm [roughly a half-inch].  The downside of the cardiac device would be its permanency -- it could never be removed.  In the end, the docs decided to go with the button, which would have to be ordered and we could do the endoscopy that Friday [we had started our discussions on Monday, July 18]

On Friday, July 22, I was to be at the hospital at 6:30am [!!] for a 7:30am procedure.  Why Accessa--Ride had to give me a pickup time of 4:41 is beyond me, but we woke up at 3:30 and the vehicle was outside in the pitch-black at 4:30am.  We reached the hospital by 5:10am and the Endoscopy Suite wasn't open yet,  but Au Bon Pain was.  So Cheryl was able to have a cup of coffee.  The endoscopy department didn't even open until 6:45, and we had to fill out pages and pages of paperwork for the fourth time!!

The doctor showed me the Mic-key button and indicated which part would be above the belly.  I approved -- what else could I do?  This time, they managed to sedate me enough that I didn't remember a thing,  Miraculously,  there were no food restrictions after the procedure this time, so off we went to the Au Bon Pain where we both had lunch.  So ended a saga that began May11 with the removal of a clogged PEG tube, and concluded four endoscopic procedures, 2 boxes of 600 gauze pads [at $104.00 each out-of-pocket], 3 6-packs of Nexcare trauma-free tape [$36 each], $5 almost-daily laundries, 4 frustrated aides, and a stressed-out and depressed me-- later -- with a bad case of cabin fever.  Mind you, even before this odyssey of grossness, my clogged tube was leaking and smelling for almost 2 years.

Is it perfect?  Not by a long shot.  I still put a single 6-ply 4x4 gauze over the button because it still slightly leaks.  But this is a far cry from 6-8 gauze pads 3 or four times a day and still ruining all my tops.  I can leave the house and wear shirts and blouses pretty close-fitting.  For the first time in years, I can down a smoothie and not worry that most of it will come out onto my belly.  And I can take care of other health concerns and tests -- dental, opthamologist, mammogram and breast sonogram, and thyroid needle biopsy, all of which I have been postponing.