Any Port in a Storm

OK, Campers, it was back to chemo yesterday.  So far, so good - no nausea.  And, I will back to Moffitt on Tuesday, 12/29, to have a port installed.  This will make for 'one-stop shopping' when I go for blood draws and IV's.  They will only have to stick a needle into the port instead of hunting for veins and jabbing me until they find one that doesn't collapse.  And since I'll be getting chemo for the rest of my life, this will make giant steps as far as comfort goes.

And I'm looking forward to the next few weeks when all the kids and grandkids will be in town for Christmas!!  Life is good.

Not much else for now.

Peace and love!!
Joe

No More Bad Hair Days!!

Well, Campers, this is not the most current news, but my hair is all gone.  It had been falling out and was ratty, so my friend Barry came over with his clippers and all and completed the job.  It really has not been hard to get used to.  I occasionally reach up to straighten it out. but those instances are fewer and further between.  My mustache and eyebrows are likewise thinning and I figure they'll be gone within two weeks. 

Oh, and another adventure last Wednesday.  I had some redness, swelling, and soreness on my right arm, at the site of one of the IV's from when I was in the hospital.  So, after Team Trivia, Elaine brought me to the ER at Sarasota Memorial where they diagnosed me with superficial phlebitis and a small blood clot.  I have to take an aspirin a day and a new antibiotic and apply heat to the site periodically.  The treatment is working and it's noticeably better.

Not much else going on.  Elaine put up the Christmas tree and has begun decorating.  I have appointments at Moffitt tomorrow for blood draw, a CT scan, and to talk to the doctor.  More detail will follow.

Peace and Love to all!!!
Joe

I'm Home!!

Well Campers, I have been sprung!!  I'm home, had a nap and shower, and feel human again.  They took good care of me in the hospital, but there's no place like home!!!

I feel pretty good, if  a bit tired.  As I recall once telling Elaine that if I go through this ordeal and don't survive, I'm going to be big-time p@ssed.

Well, that's it for now as I'm beat.

Peace and love to all!
Joe

It's Good News Day!

Well Campers, they finished my oil change today by installing a new filter.  This device in the main vein to my heart will screen out any blood clots before doing any damage.  The upside is that I can discontinue blood thinners which should put an end to my random bleeding!

And, there's more!  The CT scan they did yesterday showed significant shrinkage in the mass in my lung!!  So, it seems I'm responding well to treatment.

Once again, my world is spinning on greased grooves!!

Peace and love to all!
Joe

Yet Another Twist in the Road

Well, Campers, I type this from Sarasota Memorial Hospital, where I have been a patient since Sunday. I had a persistent nosebleed and a fever of 100.3, and was feeling really lousy. Elaine brought me to the ER, they looked at me, ran some tests, and decided that was where I should stay.

It seems to be a combination of the effects of the chemo on my body and some side effects from Eliquis, a heavy-duty blood thinner.  Since my blood chemistry is really wonky, I've been receiving new blood and am hooked up to about three IV's for most of the day.  And today, one of the doctors advised me that they may put a filter on the main vein into my heart to block a possible blood clot from reaching it.  They're going to keep me here until my blood counts stabilize.

The real kicker is that all of the kids are in town and the only time I'm getting to see them is on hospital visits.

Hopefully the oil change and other hardware will turn things around.

Well, no other words of wit and wisdom. I'll keep you posted.

Peace and love to one and all!!
Joe

Some New Toys and Other Ramblings

Well, Campers, I got some new toys yesterday to help along the path – a suction machine to help clear out the secretions in my throat and a wheeled walker to increase my mobility.  I used the walker at Moffitt today and it is way cool.  It gives me a little more confidence in my ability to get around.

And this was a Moffitt chemo-marathon week.  I was wired for about 4-1/2 hours today.  Fortunately, this blend of chemo does not induce nausea, though it does make me tired.  I was down for a 1-1/2 nap after we got home today.

My hair is thinning faster and I'm thinking that I'll soon shave it off as I'm beginning to look mighty ratty.  Elaine says that I'll look distinguished.  I'm thing better distinguished than extinguished!!

And we will be beginning our week and a half of company today!!  My son Joey and his girlfriend Tabatha will be arriving from Atlanta sometime this evening.   And then my daughters Liz and Adrienne, my son-in-law Eric, and my granddaughter Amelia will be arriving from Brooklyn on Saturday.  The joint will be jumping.

Tomorrow will be Thanksgiving.  I will not be able to partake in the Bacchanalian feasting that will be going on around the country, but I can reflect on the past year and what I have to be thankful for.  The list starts with my family and friends who have been there all hours of the day and night.  Without them, I would not be here to type this missive.  There are the doctors and others at Moffitt who have worked their magic to keep me among the living.  I know it sounds weird for someone in my position to be thankful, but as I have written several times before, every day I see people worse off than me; I have a chance to live a longer life – they don’t and their suffering every day is far greater than mine.  Yeah, I’m doing OK for a poor boy from the sticks.

One more time, I had a lot more to say crafted in my mind, but froze up when I hit the keyboard.  Oh, well, I’ll have lots of time to remember and get it to you.

Happy Thanksgiving, Peace, and Love to all off you!!

Joe

A New Goal and It's Love, Actually

Well, Campers.  I have a new goal in life.  That would be that I want to survive cancer long enough to die of something else.  Maybe that runaway beer truck will get me after all, or a suicide bomber, or another disease all together.  Whatever, I just want to be able to thumb my nose at cancer and tell it that it's not so tough after all.  A Pyrrhic victory,  yes, but a victory nonetheless.

After four days away from Moffitt, I will be going back the next two days, Tuesday for blood draw and a doctor visit and Wednesday for my marathon chemo session.  Hopefully I will be able to make Team Trivia on Wednesday, too.

And my sister Connie and family will be leaving on Wednesday, heading back to points north.  It's been really great having them here.  I think their visit pumped some fresh blood through my weary body.  And, there I'll be more company soon!  My son Joey and his girlfriend Tabatha will be down from Atlanta over Thanksgiving and my daughters Liz and Adrienne, along with my son-in-law Eric and granddaughter Amelia will be arriving from Brooklyn the weekend after Thanksgiving.  All good, very, very good!!

And I've been feeling pretty good the past few days.  Breathing is easier and I'm not as fatigued.  It would seem that I'm responding to the treatments.  Which actually is a good thing as I wouldn't want to be having my body battered by fire and poison, er, radiation and chemo, for nothing.  That stuff wears me out, let me tell you.

Oh, and some others thoughts after watching the movie 'Love, Actually', to kick off the holiday movie season.  It is one of my favorite movies ever and if you've never seen it, stop reading right now and run out and rent it.  Now I've seen it at least a dozen times but this is the first time since my diagnosis of cancer.  And parts of it hit me a lot differently this time.  So as not to bore and/or confuse those who haven't seen it,I'll keep my remarks brief.  But I had a new understanding of the scenes with Daniel and Sam, dealing with the passing of Joanna, Daniel's wife and Sam's mom, after a long illness.  Suffice it to say that there was a new poignancy for me during these scenes that hadn't been there before. 

Well, enough for now.  my daughter Kate and grandchildren Jennifer and David are due here for a visit any minute.  Gotta get ready!!

Peace and love to all,
Joe

Feeling Radiant after Radiation

Hey, Campers!!  Well, a few days off following two days worth of radiation to try to shrink the mass in my left lung to ease the shortness of breath.  If should take about a week to work, so we shall see,  And this is my off week from chemo. 

We have company, which is fun.  My sister Connie and family are down for a bit for PA.  All good!!!

As I ramble today, keep in mind that I am the eternal optimist.  In my world, the glass is neither half empty nor half full, but half way to the next drink.  So what I say next totally hypothetical.  But, I can understand why some people in my position yield to the temptation to discontinue treatment and give up the ghost.  There's a certain simplistic beauty to that approach. 

But, I really never considered that route.  Given the option of 6 more months without treatment or 18 with, the choice was easy for me.  And I have no intention of adhering to that 18 (now 17) month shelf life.  I'm planning on being around to see my grandchildren grow up.  Now, I also have to admit that I'm pretty lucky right now for a kid with cancer.  I'm not in any pain, just some discomfort.  I'm fatigued a lot, short of breath a lot, and have a mucous build-up in the back of my throat.  But I'm mostly able to function.

I'm realizing that I should type these updates in the middle of the night when I seem to be most lucid.  I have what I want to enter crystalized in my mind, but forget when I'm at the keyboard.  No doubt part of the chemo fog. . .  ;-)

Well, enough for now.  Back to the chemo grind next Tuesday and Wednesday, but for now I'm just enjoying life!!

Peace and love to all,
Joe

It Could Always Be Worse

OK, Campers, I know that comparing oneself to others is seldom productive, but sometime you just can't help yourself. . .

But when I see what others are going through, I can't help feeling blessed.   (What,  you were expecting some bitterness from me??  Not with my sweet disposition.  ;-). I WILL get better.  A lot of people with crippling ailments won't.

I'm thinking of my neighbor across the street, Shel. He's a little younger than me and had worked for the Post Office.  He was a very active guy, always working in his yard and feeding the squirrels. Then  we noticed he was acting a bit 'off'.  To cut to the chase, he developed some sort of early onset dementia.  He will not get better.  Elaine spoke with his wife the other day and found out that he has moved to a nursing facility, so he can no longer live in the house he loved.  That, Campers, is truly someone bit by bad luck.

But to go on with this theme, it reminds me of my own parents who suffered from varying forms of dementia in their final years.  After my sister Mary died in 1994 and my parents experienced the loss of a child for the second time, they just never came back.  It got to the point where it was dangerous for them to live in their house so they moved to an assisted living facility.  And their reactions to the move varied wildly.  My mother loved it.  She raved about how she could put her dirty laundry outside the door in the morning and in the evening it would come back clean.  She could walk down the hall at mealtimes, sit down, and be fed.  She was snug as a bug in a rug.

My father, on the other had, was miserable.  Now, for a little history, my father was one of the most brilliant individuals I ever knew.  He never went to high school as he was the oldest son In the family and when his father died there was no question that he had to go to work but his thirst for knowledge never ended.  He was totally self taught and knew more about darn near anything than anyone I ever knew.  Back  to the ALF. . .  He tended to exhibit the signs most closely associated with classic Alzheimer's - he was cranky and paranoid.  He was sure people were stealing from him. And the 'stolen' objects were always insignificant, like his 29-cent ball-point pen.  But I think that he was mostly frustrated - he knew that he once knew something but could no longer remember it.

Funny thing was, until recently my biggest fear was that would happen to me. Now one of my greatest hopes is that I will live long enough FOR it to happen to me. Perspective is a funny thing these days.

I guess I have to enjoy these trips down Memory Lane while I can still remember how to get there!!!

Peace and love to all!!
Joe

Very Quick Update

OK, Campers, this will be short as we just got back from Moffitt and I am beat. . .

Had a 4-1/2 hour marathon chemo session today.  Next week will be a week off from chemo, but will be going up to Moffitt Tuesday and Wednesday for radiation to try to shrink the mass in my left lung to hopefully alleviate the shortness of breath thing.

Not to bad on side effects, though some of the long term ones promised are starting to become more pronounced.  The rash on my face is getting a little larger and I noticed my hairline is receding a little more so the hair loss has started.  But, if the treatment works, I can handle acne and baldness for a few more years on this third rock from the sun.

Peace and love to all!!!
Joe

A Bit of a Reality Check

Ok, Campers, another trip to Moffitt today and a bit of a reality check.  For the first time today, I noticed that Dr. Caudill, my radiation oncologist, made the note on the report I signed approving 'palliative radiation'.  The primary focus of palliative care is on providing relief from symptoms and pain, not curing the disease.  Now, I've known for a while that there is no cure for me, but seeing it written was a sobering thought.

But, having said that, I'm looking to receive palliative care for many, many years. I'm not going to go gently into that good night anytime soon.

And we talked of what that care will entail.  Seems that it will primarily be a few days of radiation to break up/shrink the mass in my left lung that is constricting my air passage.  Hopefully, that will allow me to get more oxygen, hence I won't be so short of breath.  At this point, any relief will be welcome and the odds of success are three or four out of five.  Now, let me quickly add that I'm really not in any pain.  My discomfort comes from fatigue and shortness of breath, so things could be far worse.  All in all, I'm in pretty good shape for a kid with cancer!!

Tomorrow should hold some fun as some folks from my former job are going to stop by.  Then it will back to Moffitt the rest of the week.  Wednesday will be for the first round of preparation for radiation, Thursday will be blood draw and preparation for chemo, and then the actual infusion of chemo on Friday.  Next week will be a week off from chemo, which will be a welcome break as my sister, brother-in-law, and niece and her husband will be down from PA for a visit.  I'm looking forward to seeing them!!

Peace and love to all!!!
Joe

Living With Cancer

OK, Campers. Living. With. Cancer. . .

These three words will pretty well define the rest of my life, however long that may be.  There may be times that there are no signs of disease, but it will still be lurking in my bloodstream until it finds the next place to settle.  But, this is all OK because the operative word of this equation is LIVING!!!

I'm mostly in a holding pattern for now, receiving chemo one day a week.  So far, so good on side effects.  No nausea and just a slight rash on my face, though I have never had a rash on my nose before.  Weird.  And my blood thinner has switched to Eliquis in pill form so Nurse Ratchett, er. . .  Elaine, no longer has to give me shots twice a day.

And a follow-up on my last post about fairness in life.  As someone once said, if life was fair, Elvis would be alive and the impersonators would be dead.

And, we'll be getting out tonight to go to a Halloween party at some friends' house.  That will be the first time out that is not to go to a doctor/hospital or to Publix for provisions in a few weeks.  Life is good!!

Peace and love to all,
Joe

A Flash of Memory

OK, Campers, I remember what I wanted to say in the last post, and, frankly it's not that interesting. . .  

But here goes anyway.  Part of the side effects of the chemo are the facts that this is the time I'll lose my hair.  And, my face will most likely break out in an acne-like rash.  Actually, it has started to already.  Elaine has already remarked that with the rash and the change in my sleep habits which have me rising in the 11 - noon time frame, I am channeling my inner teenager.  She's a clever one, my Elaine is!!

On a more serious note, I am sort of flattered by all the people who tell me that I'm such a good guy that this just isn't fair.  I'd like to agree, but, sadly, 'fair' has nothing to do with it.  The reaper sows, the reapers reaps.  I wish more than anyone that this was not the case, but it is.  And we're coping.  The fact that I have the most fantastic group of friends and supporters makes it easier to bear, but it is a load I never saw coming.  But my body talks to me and it hasn't been wrong yet.  And it is telling me that I'm going to be around a while longer than 18 months.  So, my loyal readers, know that you're stuck with me a while!!

Well, time to get some sleep as the next two days will be spend at Moffitt, including 7 hours of infusion on Friday.  But everybody's got to be somewhere!!

Peace and love,
Joe

Well, Campers, sorry for the lull in postings, but I guess I'm just taking a while to get used to having a shelf life.  But, that's the way it is, this 28th day of October, 2015, which happens to be my 65th birthday.  Oh, thanks to one and all for all the birthday wishes!!  Really made my day!!

But, all in all, I'm doing OK.  Tonight is trivia night and we're hoping to make it for at least a little bit.    And Elaine has to be tired of just going to work and then to my various Doctor appointments.  She needs a break more than I do.

Now I know that I had thought about what I wanted to write here today and had it all planned out.  But I somehow forgot what it was.  Getting old and having chemo brain on top of that is a b*tch, let me tell you!!  Hopefully I'll remember what it was and get it down next time 'cause it was truly epic!!

Peace and love to all!

The Cycle Begins

Well, Campers, today was my first 7-hour marathon chemo session,  And I am beat!!

Yesterday was blood draw, a chest x-ray, and a talk with Dr. Russell, my medical oncologist.  All is 'normal', given that I have a huge cancerous mass in my left lung.  But just having the treatment start gives me renewed confidence that I'm going to beat this thing

It's still hard to accept.  I mean, one day, I'm feeling pretty good, all things considered, and then it's slam. bam,  Yankee Doodle Dandy and I find out I now have a shelf life. 

But we've all kept and used things well beyond that printed shelf life. . .

Peace and love,
Joe

Let the Games Begin!

Well, Campers, tomorrow, Friday, begins my marathon chemotherapy session.  Today, I was at Moffitt to have blood drawn and to meet with the Doctor.  All systems are go for about 7 hours of chemo tomorrow.  Be still, my heart!

In one way, it's a relief; after a few weeks of waiting, we will finally make some progress in fighting the disease.  On the other hand, it's somewhat terrifying as I will be on new ground.  Yeah, I did have three rounds of chemo a year ago, but nothing like the barrage I'll be facing.  But, it's what I have to do to beat this miserable disease, so it will be done.

Not much more to add as we are in the calm before the storm.  More news to follow soon.

Peace and love to all!!
Joe

Idle Thoughts from an Idle Mind

Well, Campers, just to share some idle thoughts as I ride the rails. . .

First, let me establish that just because I've arbitrarily been given 18 months that I'm buying it.  I have absolutely no intention of checking out then but intend on being a pain in Elaine's side until we're both in our dotage.

But, I'd be lying if I said I haven't thought about the end of the line and you, my astute readers, would know that I was handing you a pound of horse hooey.  What's kind of funny is that in normal day to day living, we really never contemplate death much.  (Unless we're some kind of Woody Allen-esque wacko who thinks of nothing else.). But when you're told what your expected expiration date is, the game seems to change a bit.

We all know the litanies about how we could die tomorrow, being struck down in the prime of life by a runaway beer truck.  Yes, we think, that could happen but it's highly unlikely and we're going to haunt Mother Earth till we're ancient.

But once you've been given that estimate, it plays on your mind.  And I'm finding that I now feel invincible, knowing that I nominally have 18 months.  A few weeks ago, I had no idea how much longer my ticket was good for; now I sort of do (if I choose to believe what the doctors say).  It's totally irrational, I know, but I bizarrely feel safe.  I won't get hit by that mythical beer truck tomorrow, nor will I be collateral damage to a suicide bomber.  I have at least 18 months, by God!!!

It's a sort of surreal freedom, in the Bobby McGee sense of  "Freedom's just another word for nothing left to lose."  But I look forward to my freedom and hope to enjoy the rest of the ride, however long it is.

As alway, peace and love to you, my loyal readers.

Joe

Here We Go Again

Well, Campers, it’s been a while, so this will be long and newsy. . .

Let’s start with some background.   Back in August of 2014, I had a PET Scan and was pronounced free of disease.  I rested some more and went back to work in March 2015 for half days.  For about six months, my world was spinning on greased grooves.

Then, about 4 – 6 weeks ago, I noticed that the fatigue was not improving and I was short of breath a lot, after even minimal activity.  I had some doctor appointments and they ran another CT Scan.  Well, a new mass showed up in my left lung that had not been there in November and was constricting my airways.  I was then scheduled for a biopsy, though the doctors had a pretty good idea what it would reveal.

So, l had the biopsy and went back to Moffitt last Tuesday for the results.  In the 2-3 days leading up to that trip, my shortness of breath got steadily worse.   When I got to my appointment with Dr. Russell, it was pretty obvious that something was not right.  Now let me interject a little humor into the proceedings. . .   When the techs were taking my vitals, one of the connections was not good so my blood oxygen level registered at a level usually reserved for dead people.  So the hospital version of an APB went out and within seconds, my room and the hallway outside was filled with nurses and techs who popped up like prairie dogs.  We got everything sorted out and I was apprised of what happened during the biopsy.  It seems that during the procedure, excess air had gotten into the linings of my left lung, causing it to partially collapse; hence, the increased shortness of breath.  So, they packed me up to slip a needle into the lung to remove the excess air.  They then decided to admit me to the hospital for observation, even though I insisted that I’m just not that interesting.

But, I ended up staying at the Moffitt Hilton for two nights, finally being released Thursday afternoon.  At that point, Elaine and I were finally able to talk to Dr. Russell about what the biopsy showed, the original reason for going there on Tuesday.   As we had expected, the new mass is cancerous and had metastasized from the original cancer in my throat.  Since that was its genesis, the cancer is treatable but incurable.  I will begin chemotherapy on Thursday, and will quite likely last the rest of my life.  What Elaine and I did not expect is that the rest of my life is now projected at 18 months.   Now, I fully expect to be one of those overachievers who beats the curve. I want my grandchildren to have the time to get to know and remember me.   People in the know in my support group expect there to be major breakthroughs in cancer cures in the next year of two.  So, if I can kick the can down the road just a little bit, there may be options available to me then that are not available now.  Time will tell and we shall see.

In the meantime, I’m not doing too badly.  There’s really no pain to speak of, just massive mucous blockage in my throat, profound tiredness, and shortness of breath.  I am living on Boost VHC, which isn’t too bad if you doctor it with enough chocolate syrup.  I enjoy company, so if anyone reading this is in the area and has some time, let me know.  My email is papajoe67@gmail.com and my phone is 941-928-2543.

So, that’s the way it is and life truly is beautiful.

What I Did on My Summer Vacation. . .

Well, Campers, here is the list of books and read and movies I watched during the period of my convalescence, which is still on-going.  The lists are in no particular order and I’m sure there are some omissions.  But, they were a fun way to while away the time and I want to thank my friends Will and Karen who spent time watching most of the movies with me.  Their friendship knows no bound!!

First, the books. . .

‘Three Men in a Boat’ - Jerome K. Jerome

 ‘Blackout’ - Connie Willis

‘All Clear’ - Connie Willis

‘To Say Nothing of the Dog’ - Connie Willis

‘Miracle and Other Christmas Stories’ – Connie Willis

‘Best of Connie Willis’

‘The Cuckoo's Calling’ - JK Rowling as Robert Galbraith

‘The Silkworm’ - JK Rowling as Robert Galbraith

‘Trigger Warning’ anthology - Neil Gaiman

‘Funny Girl’ - Nick Hornby

Several Christmas collections

‘Rogues’ – Gardner Dozois and George R. R. Martin, eds.

‘Dangerous Women’ – Gardner Dozois and George R. R. Martin, eds.

‘Grail’ – Stephen Lawhead

‘Easiest If I Had a Gun’ – Michael Gerhard Martin

‘Jack of Kinrowan’ – Charles DeLiont

‘Avalon’ – Stephen Lawhead

‘Queen of Camelot’ – Nancy McKenzie

‘Prince of Dreams’ – Nancy McKenzie

‘Born to Exile’ – Phyllis Eisenstein

‘The Haunted Abbot’ – Peter Tremayne

‘A Man in Full’ – Tom Wolfe

‘I Am Charlotte Simmons’ – Tom Wolfe

'Byzantium’ – Stephen Lwahead

‘The Darkness’ – Jason Pinter

‘The Hunters’ – Jason Pinter

‘The Fury’ - – Jason Pinter

‘The Stolen’ – Jason Pinter

‘The Guilty’ – Jason Pinter

‘The Mark’ - – Jason Pinter

‘Everybody’s Got Something’ – Robin Roberts

 

Next the movies. . .

 

‘The Hurt Locker’

‘Lars and the Real Girl’

‘Amarcord’

‘La Dolce Vita’

‘Into the Woods’

‘The Graduate’

Lord of the Rings trilogy

‘Dune’ (1984)

‘Dune’ (2000)

‘Children of Dune’

Jodorowsky's ‘Dune’

‘Harry Potter & Deathly Hallows’ - Parts 1 and 2

‘Firefly’ (14 episodes)

‘Serenity’

‘Brother Cadfael’ (13 episodes)

‘Good Will Hunting’

‘Good Morning Vietnam’

‘Dead Poets Society’

‘The Birdcage’

‘The World According to Garp’

‘Moscow on the Hudson’

‘This is Spinal Tap’

‘Waiting for Guffman’

‘A Mighty Wind’

‘Best in Show’

‘For Your Consideration’

‘Gimme Shelter’

‘20 Feet from Stardom’

‘Cadillac Records’

‘About a Boy’

‘High Fidelity’

‘Fever Pitch’

‘Stardust’

‘Mirrormask’

‘Groundhog Day’

‘Stripes’

‘The Mists of Avalon’

‘King Arthur’

‘MASH’

‘Network’

‘Sirens’

‘The Big Easy’

‘The Usual Suspects’

‘Pulp Fiction’

‘The Princess Bride’

‘Local Hero’

‘2001’

‘Slaughterhouse Five’

‘Reservoir Dogs’

‘Love, Actually’

‘My Big Fat Greek Wedding’

‘Breakfast of Champions’

‘Ulee’s Gold’

‘Ruby in Paradise’

‘Tommy’

‘Sergeant Pepper’s Lonely Hearts Club Band’

‘The Magnificent Seven’

‘Silverado’

‘Wonder Boys’

‘Miracle on 34^th Street’ – 2 versions

‘A Christmas Story’

‘Mr. Magoo’s Christmas Carol’

‘Indiana Jones and the Last Crusade’

‘The Ladykillers’

 

I thank you for indulging me by reading these lists and I hope that I was able to trigger some pleasant memories for each of you.

 

Peace and Love!!

Joe

 

 

 

Moving On. ..

Well, Campers, a brief update on my marathon visit to Moffitt on Tuesday. . .

All is pretty darn good!!  I was given clearance to no longer have to drink thickened liquids, my diet was expanded, and they took out the feeding tube.  Oh, and BTW, I don’t have cancer.  All in all, a pretty good report.  To help me ‘celebrate’, Elaine cooked up a big pot of spaghetti and meatballs for dinner, heaven for a good old Italian boy like me.

I still get tired easily but even that is lessening.  I’m still working 4 hours a day and take a 1-1/2 to 2-1/2 hour nap when I get home, but I feel stronger.  

At my friend Will Eddins’ suggestion, I’m working on a list that I will post soon, of how I spent my convalescence.  It will include the books I read and movies I saw.  It will be quite long, I realized.  Perhaps something for future generations of cancer patients to work their way through.  I know that it certainly helped me from going down the rat hole.

More will follow soon. . .

Peace and love!!

Joe

A Flash of Green. . .

Well, campers, after watching sunsets on the Florida Gulf Coast for 32 years, I finally saw the green flash tonight.  It was worth waiting for.


Peace and Love!!
Joe

Somber News. . .

Well, Campers, a bit of somber news at my last Support Group meeting on Thursday.  Ernie, one of our group and a snowbird, returned to Madison, WI, and elected to discontinue treatment and checked into Hospice.  He has Stage 4 prostate cancer which has metastasized to his thigh, spine, lungs, and other places. He has been in obvious discomfort and pain for a while.  I don’t know that it’s the choice I would have made, but I have to respect his decision and hope that he finds the peace he’s seeking.

Peace and Love!

Joe

A Holding Pattern. . .

Well, Campers, activity has been slow. . .  I'm getting a little better day by day, but still not ready to dance in the streets.  My next 'big' day will be May 12, when I have a marathon session at Moffitt including blood work, a swallow study, a chest x-ray, and an appointment with my medical oncologist.  With any luck, they will also remove the feeding tube then as I have not used it for over two months now.


I've been back to work for five weeks, working half days.  My routine is pretty much work from 8:30 to 12:30, get home about 1:00 PM, check email, and then take a 2-hour nap.  Work is going well,  After meeting some of the dozen or so new people who started there while I was out and figuring out the new server configurations, it was almost like I had never left.  Same desk and everything. . .


And I've been attending two support groups, a monthly group for head and neck cancers and a weekly group for general cancer patients.  As I've written in these pages before, I sort of feel funny going to support groups, as in the weekly group, I'm the one who's the best off.  I have no active disease nor am I actively being treated for anything.  Survivor guilt often kicks in, but I have been assured by the group facilitator that people like me are a valuable part of support groups as far as sharing my experiences and sort of being the 'after' photo.  This is by no means to say that I'm totally cured - far from it - but I am a goodly way down the path to as recovered as I'll ever be.


I still get beastly tired and have a mucous block in my throat that still makes swallowing anything of any substance difficult.  So, I am still on the diet of thickened liquids and pureed foods.  And frankly, it's getting old.  I am finding myself actually hungry these days and look covetously on the 'real' foods that others are eating.  Soon, I tell myself, soon.  The bright side that I've lost about 35 pounds, all of which I could afford to lose.  Now, I would not recommend my weight-loss program to anyone else, but it was wickedly effective. . .


I will continue to post updates as I can, but for now, the adage 'No news is good news; rings true.


Peace and Love!!
Joe

Catharsis. . .

Well, Campers, today was a day of catharsis. .  .

I cleaned up the Wall of Tributes which held all the cards I received during my treatment and the white board which contained the calendar with my treatment schedule on it.

I reread each card as I took them down (and got a little misty-eyed) and then wiped the white board clean.  It’s time to go on with a clean slate.

And I want to thank you all one more time for the cards, visits, and other well-wishes during my times of treatment and recovery.  They made the pain and fear easier to take.  (OK, the OxyContin, morphine, Xanax, and Remeron also had their place. . .  ;-)

And a special thanks to my friends Karen and Will who drove me to Moffitt  on many occasions and sat with me many an afternoon through many a movie on DVD.  I have been blessed with the best friends a poor boy from the sticks could ever hope to have.

The healing is still in progress, but I feel more like my old self every day.  Whether that is a blessing or a curse remains to be seen. . .  ;-)

It’s Saturday and I’m going to run some errands as Elaine is at work.  March Madness is on the TV and all is right with the world. 

Peace and Love!!!!

Joe

Back in the Saddle Again. . .

Well, Campers, I have returned to work on a part-time basis as of today!!!

There are still  numerous side and after effects from the disease and the radiation and chemotherapy that I received last spring.  Oh, I have been free of disease since August, so that’s a good thing!!  But, let me list the goodies. . .

• I’ve lost some weight.  I could still afford to lose some more, but it’s a start.
• I am very sensitive to cold.  I’m not sure how much longer that will last, but I’m fortunate to live where I do.
• I get tired easily.  I’ve been told both by my doctors and in my support groups that this will last a year or two after treatment ends.  Since my treatment ended in May 2014, I still have a few more months to make the one year mark.
• I suffered some nerve damage and now have neuropathy, or occasional tingling in my hands and feet.  This will probably be with me the rest of my life.
• My throat is still swollen and filled with mucous.  As a result, my voice is somewhat ‘muddled’.
• Also, I still have the feeding tube in place though I haven't used it for a month and a half.  I'm still limited as to what I can eat, and am restricted to pureed foods and thickened liquids.
• I have lymphedema in my neck.  The cancer also affected some of my lymph nodes and others were fried by radiation.  As I result, the lymphatic fluid in my neck pools instead of draining as it’s supposed to.  So, I have to have my neck massaged daily and taped with kinesiology tape to keep the passages somewhat open and the fluids flowing.  My wife Elaine has learned to do the massage and taping, so my frequent visits to an occupational therapist are a thing of the past.  The lymphedema will be with me to some extent for the rest of my life.  I may not have to tape up that long, but we shall see what we shall see.
• Finally, the chemo drug I received, cisplatin, has a known side effect of hearing loss in 10 – 30% of cases.  I was one of the ones that scored on this one.   The hearing in my left ear is significantly degraded and the hearing loss in my right ear is total.  I now wear a system of bi-cross hearing aids that wirelessly routes sound from my right side to the hearing aid on my left ear.

So, that’s the way it is.  Every day we wake up on the green side of the grass is a great day!!!

It's Good News Week!!

Well, Campers, I had two appointments at Moffitt this week and the news was good!!  My swallowing is improving, and though I’m still limited to thickened liquids and pureed food, I was cleared to drink a class of ‘regular’ water a day.  So far, so good – no choking or aspiration.   And my visit with my radiation oncologist was equally encouraging.  I’m progressing as good as can be expected and I can most likely expect to lose the feeding tube for keeps in 3 – 4 months.  And, better still, the lymphedema may be controllable to the point that I won’t need drained every day and can lose the tape on my neck.  Now, that would still be a year or two away, but there’s hope.  I had been led to believe that the tape would be with me forever.  In the meantime, I will have some fun with it as I ordered a 6-pack of kinesiology tape in multiple colors.  And Elaine has really gotten good at doing my draining massage and taping to the point of compliments from Christa, my OT.  I’m, thinking that barring any more surprises, I’d like to go back to work in early March.  Life is good!!

Now there still could be some more late-blooming side effects, most notably thyroid damage, that could surface in the next few months.  If that’s the case, I’ll just deal with them.  The usual thyroid problems are treatable with medication, so what’s one more pill a day??

Support group got a little interesting this past Thursday.  We got to function as a support group for one of our number.  Turns out one of the guys on chemo was wondering if the quality of his life is worth going on or if he’s just ready to discontinue treatment and pack it in.  I’m thinking that it was mostly the chemo talking, but we all listened, asked questions, and gave him what support we each could.  I think that by the end of the session, he felt somewhat better and will hang on for a bit longer.  I hope he hangs on till he’s cured, but it’s a personal decision.  All of us in the group are essentially on the same path, but each deviates according to our own strengths and desires.  This past year has been one heck of a ride, let me tell you.

And I shared something I saw on Facebook with the group.  There’s no attribution so I don’t know who said it, but they were spot on.  It goes “Cancer changes people.  It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately.”

Peace and Love!!!

Joe

 

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