A Sobering Day. . .

Well, Campers, Thursday was a little bit sobering.  The day before, one of the members of my Thursday Support Group, John, passed on.  It was not a total surprise as he had been in the Hospice House for a few weeks, but it sort of reminded the rest of us or our own mortality.

But even before that, I had begun to reassess my post-retirement direction.  Ever since David left us 10 years ago, I had thought that, after retirement, I would become a volunteer at Hospice, as I was so impressed by the work they did and I had some experience dealing with terminal cancer patients.  But, now since my own affliction, I have become more involved in support groups and have some dealings with the volunteers at cancer centers.  And, I find that I feel more comfortable being the ‘bluebird of happiness’ and share my more upbeat adventures of coping with cancer and beating it.  A few years ago I realized that if I worked at Hospice, I would be good at it, but I would come home every day and cry.  Probably something that would wear on me after a while.  So, what I’m saying is that I don’t think I have what it takes to deal with terminal patients all the time.  As I’ve said many times before, the workers at Hospice are angels; they know that they’re going to lose every patient but still go back for more.  They are true heroes, as well as being true angels.

But I’m thinking I would be best suited for the Center for Building Hope or a local cancer center, if I can find one that I can truly believe in.  I have a lot of experience on both sides of the fence now and feel that if I can make one person a day smile and give them hope in their struggle every day, I can die a happy man.

And, my condition continues to improve daily.  I’m still outrageously week and get tired easily, but I can go most days without a nap.  My swallowing is still difficult, but improving.  As I type this, I am noshing on some carrots that Elaine pureed with brown sugar and cinnamon (speaking of true angels!).  I still have the feeding tube and most likely will for a while longer.  But, I can live with it. 

Enough for now!!  Peace and Love until next time!!

Joe

Remembering David. . .

Well, Campers, I come to you today with mixed emotions.  Tuesday, January 20, will mark the 10^th anniversary of my son David’s passing.  It just doesn’t seem that long ago and I still miss him so much.

But we got to ‘visit’ him yesterday, Saturday.  My friends Karen and Dana were kind enough to take Elaine and me out on their boat to the spot off of Siesta Beach when David’s ashes were scattered 10 years ago come summer. Along with the Ringling Bayfront, that was one of David’s favorite places for watching the sunset.   It was a beautiful day and we left flowers at the GPS co-ordinates.  Then we just sort of sat there for a while swapping David memories.  Elaine never got to meet him, but I think through me she has a feel for who he was.  He was stubborn and bull-headed, but he was also kind and generous.  And he had about a million friends, most of whom showed up at his memorial services.  As I have said on several occasion, as weird as it sounds, my life began ten years ago, when I became the person I am now, the person who can easily cope with his own cancer.  David carried his disease with dignity and strength.  I’m sure there was fear, but he only showed it to me once in nine months.  I have learned much from him and will ever be thankful.  I learned more about living from a young man who was dying than I learned in the previous 54 years.

And, I think David sent us a sign.  On the way back in, we spotted two dolphins, always a joy and said to be good luck.

My own condition continues to improve, albeit slowly.  I still get very tired and after the sea air and festivities yesterday, I slept 12 hours last night.  But, I rarely nap during the day and can do a little more each day.  Still not sure when I can go back to work, but the light is definitely at the end of the tunnel.

Life truly is a miracle a minute.

Peace and Love!!!!

Joe

Heaven, I'm in Heaven. . . .

OK, Campers, very good news!! I got my hearing aids and am just hearing up a total racket!!  Life is grand!!  Right now, I can hear the clacking of the keys on the laptop as I type this.  I can hear the newspaper pages crinkle as I read them.  I find myself stamping my feet just because I can hear my own footsteps.  I can’t remember my hearing ever being this acute.  Progress, no stopping it!

I think I mentioned last time that since my right ear is totally gone, I got what is called a bi-cross system.  The left (‘good’) ear has a mostly conventional hearing aid with a receiver.  The right ear has what  looks like a hearing aid but is actually a transmitter that wirelessly sends whatever it picks up to the left ear.  Sometimes, it’s a little weird, like if I jangle my car keys by my right ear, I hear it clear as a bell – in my left ear.  But, it’s taking less time to get used to than I expected.  The real test will be Wednesday when I go to Team Trivia at Gecko’s, which is always a mob scene.

And something else I’ve noticed, totally unrelated to hearing.  But it seems I am now getting misty-eyed at the most inane things.  Sitcoms, commercials, you name it – anything with the slightest degree of poignancy sets me off.  The Bright House Networks commercial First Dance (http://www.youtube.com/watch?v=iiLf9_O9RaY) is guaranteed to bring tears to my eyes.  But then, it is the sweetest thing I’ve ever seen. . . .

But I think it’s a response to the time when I was in treatment and until I was declared free of disease.  I worked so hard at remaining stoic and not tearing up that it just caught up to me.   Neither a good thing nor a bad thing – just a thing.

Well, I’m going to cut it off for now – the racket of these laptop keys is driving me crazy. . . .

Peace and Love!!!!

Joe

The Rest of the Story. . .

Well, Campers, life takes some turns.  I know that on these pages, I have referred to life-changing events and today I experienced another. . .  But more on that in a minute.

I know I talked about my lymphedema treatment (taping my neck, massage to manually drain the fluid, and the compression bandage for my neck overnight).  This is something that will go on for the rest of my natural life as damaged lymph nodes do not come back.  Several nodes were cancerous and others were fried by radiation.  Elaine has been learning to do the massage and taping so eventually I won’t have to go to the occupational therapist every week.  She is an angel!!!

But another one of the side effects of the chemo I had and a possible effect triggered by radiation is hearing loss.  Well, to cut to the chase, I am now totally deaf in my right ear and have had a significant hearing loss in my left ear.  It turns out that hearing, like the lymph nodes, doesn’t come back. 

But, despair not!! Today I went to the ENT and Hearing Center and got measured up to get a bi-cross hearing system on Thursday.  The left (functioning) ear will get a mostly conventional hearing aid.  The right will get a hearing aid-like device that will pick up the sound that would normally go into that ear and wirelessly send it to the left ear.  Definitely space-age, hi-tech!!  Should be pretty cool!!

Other than that, I’m feeling a little better every day. I don’t wear out as fast and can eat pureed foods when I choose to, though I have to say my appetite has not been ravenous.  But, it will come around, I’m sure, and I will look back on these days with a sort of bizarre envy when I begin to pack the pounds back on like there’s no tomorrow.  And you know, no matter how healthy we are, we’re, none of us, guaranteed any tomorrows. So, eat and drink up and be happy!!!!!

Peace and Love!!!!!

Joe

Stay Tuned. . .

OK, Campers. . .  The cold is clearing up so life if good.


But. . .  One more roadblock. . .  I had a hearing test today and I am totally deaf in my right ear and the left is significantly degraded.  I have an appointment Monday AM with my ENT to discuss options.


More film at 11. . . 


Peace and Love!!
Joe

Irony Abounds. . .

Well, Campers. After an year of cancer, treatment, and slow recovery, I finally have hit a day where I feel absolutely miserable. And it has nothing to do with the disease, but is a wicked head cold.

I suppose it could be a lot worse!


Peace and love!!
Joe