Tuesday, August 16, 2016

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.

Thursday, August 4, 2016

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.