Hearts Are Heavy

Well, Campers, I come with you tonight with a heavy heart.  My 94-year old mother-in-law Norma crossed the great divide yesterday after an amazing struggle.  She hung on as long as she could and all six of her children were in town for her final days.  As my brother-in-law Mark said, she fouled off about 92 pitches before they snuck a curve ball by her.  I only knew her for about seven years and wish it would have been for longer.  But that was long enough to know that she was something special. She will be (and already is) missed.

As for me, I'm holding steady.  As I said, I really don't have a bucket list, but realized that, of all the weird things, I want to play a pinball machine one more time.  I used to be pretty good back in my misspent youth and whiled away many an hour flipping the silver ball.  Our daughter Liz has taken on the challenge of finding a secluded machine in a nearby dive bar where we can play in peace and quiet as I know I will be a spectacle of incompetence and long-gone reflexes.  But it will be fun!!

Along those lines, I was reminded of my son David's final weeks, when, after watching the World Series of Poker endlessly on TV, he decided that he wanted to play Texas Hold 'Em in a real casino one time.  So his friends took him and $100 north to Tampa to the Hard Rock Cafe where his wish was fulfilled.  He started out on a hot streak and doubled his money.  But, as the night wore on, he eventually lost everything.  But he had fun!  🎰

Idle thoughts. . .  I have to say that cancer has changed me in many ways and one has been that, like Blanche DuBois, I have often depended on the kindness of strangers, as well as that of friends and family.  I am no longer too proud to ask for help, even in doing the simplest things, as even those simple things now wear me out.  Taking a shower is an ordeal and it takes me about 15 minutes of rest afterward just to feel almost normal again.  But, this will be my newest normal since my lung disorders are irreversible.  So, even if they stop spreading today, I will still need my walker and oxygen the rest of my life.  But once again, I still have that precious life to cling to so I'm not complaining.  Life is good!!

At that, it's about time to sign off and prepare to watch Jeopardy!!

Peace and Love!!
Joe

Another Long Overdue Update

Well, Campers, it has been way too long. . .  Mea culpa. . .  But here goes. . .

Actually, the major story is not me but my 94-year old mother-in-law who has the kindest heart and gentlest soul you could ever hope to find.  Unfortunately, that heart is about to give out.  On the up side, all six of her children are now or have just been in town to visit (two live locally).  But the world will be a little bit drearier when she's gone.

As for the state of my health, I'm doing pretty good.  As of my last CT scan about three weeks ago, there is no new growth in my lungs and what cancer is there has broken up.  So the regimen of immunotherapy is having a positive effect.  What's more troublesome now are the two ancillary lung diseases - bronchiolitis, which is damage to the air sacs, and pulmonary fibrosis, which is damage to the lining of the lungs.  These are what are contributing to my shortness of breath and subsequent fatigue.  And though the spread of these conditions can be slowed, the damage already done is irreversible.  About two weeks ago, I was given prescriptions for an antibiotic and a steroid, and they seem to be helping as I still get short of breath but recover quicker and some of my aches and pains are gone.  So, I'm doing pretty good for a guy with three potentially terminal diseases!!!

OK, now for some stream-of-consciousness ramblings. . .  Our daughter Liz has moved in with us after relocating from Brooklyn to begin grad school at USF next year.  My son Joey and his girlfriend Tabatha are visiting from Atlanta for a week and brought us a dog.  Due to some pending logistics changes and temperament issues, Elaine and I will be fostering Riot, a Rottweiler/Other mix.  It will be good to have a pet in the house again.

And since I'm on immunotherapy and not full-blown chemo, my hair has grown back.  They say bald is sexy, but when I was bald, I looked like Gandhi. . .  What's sort of weird is that my beard on my neck no longer grows so I can shave in half the time that I used to take.

On the philosophical front, my mother-in-law's ordeals right now remind me of my son David's final days 11 years ago.  Between the two of them, I see both my own past and future.  And, yes, it is just a bit scary.  But, I'll be around for a while longer and will take advantage of and enjoy the time I have.  At my weekly support group, the question often arises of what will we do with the rest of our lives, however long that may be.  For me, it's rather simple.  I really don't have a bucket list and have pretty much accomplished most of what I want to in life,  I just want to keep doing what I've been doing on my forced retirement - reading, web surfing, and working puzzles.  I am a simple man with simple desires.  And I enjoy getting visitors since I don't get out much - gives me the chance to keep up with what's going on in the outside world and to enjoy it vicariously.  Oh, I'll go to Wednesday night team trivia challenge as long as I draw breath!!

OK, Jeopardy is on, so it's time to sign off for now.  I should be going back to Moffitt next week for treatment, so will craft my next update after that.

Peace and Love to All!!
Joe

Long Overdue Update

Yes, Campers, it has been a while.   No excuse other than sheer lack of ambition. But, here goes. . .

 Since I can’t remember what I told you last, I’ll give a little background.  I had been on weekly chemo, but the cocktail of three drugs I was receiving whacked my blood platelet count to an unacceptable level.  So, in the interim, I was cut back to only one of the drugs which was a little kinder on my blood, but was not enough to effectively fight the disease. So, a couple of months ago, I was put on a regimen of immunotherapy.  So now, I go every three weeks for an infusion of Keytruda, which is the drug that worked for Jimmy Carter.  Oh, and I pretty much have to use a wheeled walker to get around and am on oxygen 24/7.  I really suck at hide-and-seek now as all you have to do to find me is follow my air hose.

 And, so far, I think that the treatment is having some effect.  I generally feel better and do not get as short of breath after any activity like I has been.  But, even at that, there have been no extensions to my projected shelf life.  According to the averages, if the treatment works, I should be gracing this world for at least eight months, but most likely more than that.  If the treatment does not work, I’m looking at four to six months.  Now, let me hasten to add that these numbers are based on averages.  I consider nothing about me to be as pedestrian as ‘average’.  I’m planning on hanging around for a while.

 My activities have been somewhat curtailed, though I have been to a few shows at WSLR and have made it down to Venice to visit Elaine’s Mom on a few occasions.  I still go to Team Trivia Challenge every Wednesday evening and my weekly support group meetings every Thursday afternoon.  I don’t trust myself to drive so Elaine and my friends Karen and Will have served admirably as my chauffeurs.  I would be lost without my support team.

 Man, nothing like a keyboard in front of me to make my mind go blank.  I spend my days reading, surfing FaceBook, and working puzzles.  My former workmates have done a great job in keeping me supplied with puzzle books and other goodies.  A group from Tropics has been by a couple of times as well as my buddy Ken every couple of weeks.  I seem to draw energy from visitors.

 Speaking of visitors, my sister Connie and brother-in-law Frenchy were here a few weeks ago with my nephew Len from Houston.  They will be back sometime in April along with my niece Madeline and her husband Brad.  And my daughters Liz and Adrienne, son-in-law Eric, and granddaughter Amelia will be down for a few days over April 1^st.  And my son Joey is looking to come down sometime in May.  And I can’t forget my daughter Kate with the grandkids Jennifer and David who are frequent visitors.

 OK, enough of Old Home Week. . .  I’ve been enjoying March Madness on TV as the tournament is possibly my favorite sporting event of the year.  Always good for a few surprises, like Michigan State getting knocked off.  Sadly, my Pitt Panthers followed their normal pattern of one and done, this year getting knocked off by Wisconsin.  Only solace is that WI is Liz’ alma mater.  And baseball season will be firing up soon and that will mean televised games.  Life is good!!

 On that note, I’ll sign off for now.  Hopefully, the next update won’t take as long.

 Peace and love to all,

Joe

A Change Is in the Wind

Well, campers, today was another trip to Moffitt.  And again, I'm not totally sure what to make of it, so I'll just accept everything at face value and assume it's all for the best.  After being consistently low, my blood platelet count reached an acceptable level.  The last three trips found the count low so I could only receive one chemo drug instead of the usual three in the cocktail.  But since the full doses make my blood wonky, the decision was made to take a couple of weeks off and then turn to a regimen of immunotherapy, which is meant to boost my immune system to fight the cancer.  Depending upon what I qualify for, I may be placed into one of two clinical trials, or may receive a different drug on what they call a compassionate use basis.  This means using a drug that was developed for one type of cancer on another type.  In my case, I would be getting a drug that had been developed for melanoma and some types of lung cancer but has also shown to be effective against head and neck cancers.  So we shall see what we shall see. . .

All in all, I'm mostly doing OK.  Tired and mucousy, but that will probably define the rest of my life. My weight is good and, one more time, other than having cancer, I'm in great health.

And there will be several visitors in the next few weeks.  Our daughter Adrienne and her husband Eric and our granddaughter Amelia will be arriving Thursday from Brooklyn for a few days.  Then my sister Connie and brother-in-law Frenchy will be down from PA along with their son Len from Houston.  They will be here the first weekend of March.  All is good!!

Oh, and some folks from my old job at Tropics Software will be stopping by tomorrow afternoon.  That will likewise be fun.

So, peace and love till next time!
Joe

Remembering David and just When I Thought Things Couldn't Get Weirder. . .

OK, Campers, lots to talk about today. . .

First, this is the 11^th anniversary of my son David’s passing from melanoma.  As always, I think of him every day, but on this day, the memories are a little sharper.  But this year will be a little different than others.  Usually, Elaine and I go to the Ringling Bayfront to watch the sunset from what was David’s favorite spot.  My own health issues and the fact that it’s cold here today (I know, you non-Floridians are guffawing that some of us consider temperatures in the 60’s as cold) preclude that and David would be the first to call me an idiot for standing out in the cold wind in my weakened state.  And then after sunset, we would return home to watch a movie, one of David’s favorites or one that he gave me.  But tonight is Team Trivia night so I will be spending the evening with friends.  Again, one more thing David would tell me I should do.

I don’t remember if I told this story before (chemo brain in action – more on that later), but in any case, it’s my favorite David story.  Way back when, the collective family nickname for my two sons was ‘The Weasels’.  Don’t know where it came from but it stuck.  But the morning after David passed, I was the first one awake at about 8 AM.  The house was full of people, but most didn’t get to bed until 5 AM.  Even though I only had three hours of sleep, I was wide awake.  I made some coffee and then went to sit on the lanai, mostly to just sit.  Now our house was on a small lake.  After a little bit, I noticed something moving across the lake, at the extreme left end of it.  It was a weasel and it began to walk the length of the lake, on the far side from me.  Now I know people say there are no weasels in Florida, but I saw what I saw.  When it reached the end of the lake, it stopped at looked at me, through David’s eyes.  Then I heard David’s voice tell me “It’s OK, Dad.  I’m running free.”  And then the weasel turned and scampered off through the woods.

Returning to the present and its attendant weirdness, I had an embarrassing experience a couple of evenings ago.  My hearing aids have small plastic cones on the end that go into my ears.  Well, somehow, the one in my left ear (the one that has some hearing in it) came loose and lodged itself in my ear.  Elaine’s and my efforts only served to push it further in.  So, the next day meant a trip to the audiologist to have the d*mn thing professionally removed.  Ah, the joys of aging!!

Which reminds me, I promised I’d talk about chemo brain, which is a real thing.  It seems that chemotherapy has the extra side effects of slowing your thought processes and generally affecting your memory, even to the point of forgetting how to do things that you’ve known for years.  Of the ten symptoms of chemo brain, I seem to be scoring on most of them.  But, as my friend Will has pointed out, most of them are the same things that come with aging. . .  Oh, well, it’s my excuse and I’m sticking with it. 

And I still spend a lot of time remembering that I have incurable cancer and will be receiving chemo for the rest of my life or until the miracle cure is discovered.  And I do believe in magic and miracles by the way.  I’d be lying if I tried to say that I’m not scared, but we surprise ourselves with what we can deal with when we have to.  I saw something on Facebook the other day, but I forgot who said it (chemo brain in action).  But, to paraphrase, there are only two days that you can’t do anything about – yesterday and tomorrow.  So, do everything that you can today.  I like that.  As I’ve indicated before in these missives, every day brings new surprises and adjustments.  I figure by now, I’m up to the new new new new new new new new . . . new normal.

I’ve also decided that cancer is not going to be what kills me.  I envision my end coming when I get hit by a runaway beer truck.  There’s a certain irony to that as I’ve basically been on the wagon since my initial diagnosis about two years ago.  Up until I switched to wine as my adult beverage of choice, I had spent most of my adult life as a beer snob.  Now, I’m not claiming that I was an expert.  In a blind taste test, I couldn’t tell Chimay from Iron City, but I would order the Chimay every time, even at four times the price.

Finally, at my last infusion trip, the blood test showed that my platelet count was low and that it would have to be raised some so I can tolerate the chemo.  I sort of thought that an easy way to do that would be to become a vampire, which would also add years, if not centuries, to my life.  But since I couldn’t find any favorable air fares to Transylvania, I’ll just have to do what the doctor said and consume more protein.

Well, that’s it for now.  Back to Moffitt tomorrow to continue treatment.

Peace and Love to All!!

Joe

I Now Set Off Metal Detectors

OK, campers. . .  A few things I forgot yesterday.

On December 29, I had my port installed so they can do blood draws and chemo infusions without having to find and jab a vein in my arm.  It was used this past Thursday and it was sweet.  I can read and do puzzles during the 4-1/2 hour infusions without worrying about a needle popping out.  Life's simple pleasures!!

Oh, and I have to carry a card saying I have the port as I will set off metal detectors since the port is made of titanium.

And Elaine and I watched "The Butler" on Netflix last night.  An absolutely marvelous movie!!

Peace and Love to All!!
Joe

Happy 2016!!!

Well, Campers, it’s been a while and I hope you’re enjoying a happy new year.  We had a wonderful holiday season with visits from our son Joey down from Atlanta and our daughter Liz down from Brooklyn.  Once again, we celebrated tradition with our traditional non-traditional Christmas Eve dinner at Bangkok Thai Restaurant.  All is right with the world.

As for my health, I’m back on track for weekly chemo infusions with occasional weeks off.  I was treated yesterday and all my vitals and blood counts were improved since last time.  Once more, I’m in great health except for that incurable cancer thing.  Oh, well, can’t have everything, I suppose. . .  ;-)

For the most part, I feel pretty good except for the nagging excess mucous in my throat and the fact that I’m tired a lot.  But these things are manageable and far better than most alternatives.  I am a little melancholy, but that always comes with the time of year.  January 20 will mark the 11^th year of my son David’s passing from melanoma at the age of 22.  Around this time of year, I think and dream about him a lot.  Fortunately, as time passes, I’m more prone to remember the good times.

One more time, I had all sorts of things that I wanted to say queued up but seem to have lost them in the chemo fog.   I guess I’ll just have to start posting things as I think of them, regardless of the time of day.

But, on lieu of what I had planned on typing, I’ll just sort of free-lance a little.  I’ll have to say that 2015 certainly did not turn out as I has expected.  It began with me being free of disease and returning to work part-time in March.  I felt great and the world was spinning on greased grooves.  Then came August/September and the return of cancer.  I admit that I was disappointed to say the least, but stoically accepted it and began treatment again.  And, so far, the treatment has been successful.  The mass in my left lung has shrunk by about a third as of the last CT scan. Hopefully, the next scan will likewise show positive results.

Ah, that reminded me of one of my talking points.  Many of my friends have suggested that I seek alternative treatments for my disease, and perhaps someday I will, and I thank you all for your concern and well-wishes – they keep me going.  But for now, I have to say that the mainstream treatment plan is working well.  If the progress stops and the disease becomes more aggressive, then I will entertain the possibility of clinical trials and/or alternative treatments.    Again, thank you for the love you all send my way.

OK, this time I am out of things to say and will spare you further ramblings.  I promise I will keep things more current than I have been!!

Peace and Love to All!!

Joe