OK, Campers, much to catch up on. . . First, on Tuesday, July 26, we welcomed our new grandson, Marshall Albert Klinek, into the world!! Mom, Dad, big sister, and baby are all doing fine. And Amelia adores her baby brother. She's already tried to feed him a banana in case he was hungry. Elaine went up to NJ to help out and will be there for two weeks. In her absence, her sister Diane is down from Seattle to look after me and Joey and Tabatha will be down from Atlanta this coming weekend to spell her off. I'll be in good hands!! 👐
All in all, I'm feeling pretty good, though I did have a scary escapade. For a few days, I was having severe shortness of breath, even when I was sitting. Turns out, I was in the throes of anxiety. I'm now taking Xanax daily and all is much better. And I began cardiopulmonary therapy a few weeks ago. So three times a week, I go for an hour of treatment where they claim to be making me better by trying to slowly kill me. The sessions consist of 15 minutes on a treadmill, 15 minutes on a stationary bike, a couple of weight machines, and some stretching. Needless to say, I sleep well the nights of therapy.
And Elaine's family's family reunion was held a couple of weeks ago on Siesta Key right here in sunny and scenic Sarasota. It was a really good time and I really enjoyed seeing everyone. And one and all were quite effusive in their love and support. Those are some really special people.
It seems like there was so much more I had to say, but I can't remember. Oh well, I'll have more for later!!
Peace and Love to All!!!
Joe
Monday, August 1, 2016
Friday, June 24, 2016
That Deaf, Dumb, and Blind Kid Sure Plays a Mean Pinball
OK, Campers, a wish was fulfilled!! This past Monday, our daughter Liz packed me up and took me out to play pinball!! Needless to say, my game wasn't up to my misspent youth, but I didn't embarrass myself, either. Between the two of us, we won nine free games (we paid for ten) and got a pretty good return on our investment. Which reminds me. . . When I first started playing the silver ball, it was a nickel a game. The last time I played, it was up to a quarter. Now, the toll sits at a dollar a game. . . No complaints, though. I had a blast!!
And keeping with the spirit of entertainment, Elaine and I went out last Saturday to see Passerine, one of our favorite local bands. Since I had my newest portable oxygen tank which operates silently, I was not a nuisance to those patrons nearest us.
It turns out I've been claiming an incorrect disease. Instead of bronchiolitis, I have bronchiectasis, which in an inflammation of the airways and a buildup of mucous. This is definitely more in line with what I've got. Both sound more like the names of dinosaurs. . .
Finally, I'm going to begin pulmonary therapy in a couple of weeks to hopefully get some muscle tone back. Should be interesting as I am abysmally out of shape.
That's it for now!!
Peace and Love!!
Joe
That's it for now!!
Peace and Love!!
Joe
Friday, June 17, 2016
Thoughts from a Wandering Mind
OK, Campers. It's a little of this and a little of that. . .
First, thanks for all the kind words for my mother-in-law. Her passing was not unexpected, but the finality of the actual event is a jolt. Fortunately, all of her children were in town for her final days. Elaine is grieving but is at peace, as am I.
Moving on, I've been experiencing what I think is an odd phenomenon in my sleeping patterns, maybe since I'm sleeping so much. But my dreams will often reference a previous dream. For instance, a few weeks ago, I dreamt that I was going to build a fence with my brother-in-law Frenchy at the end of his yard. Then at least twice since then, my dreams have sort of picked up where that one left off. And since the original dream was so vivid, I began to wonder if it was real. Of course, that possibility is highly unlikely as I live 1000 miles away, he's 81, and I'm disabled.
And speaking of memories, I recently got an email from my childhood friend Anthony, who still lives in the old hometown. His message brought back a flood of pleasant memories of that time and place. Now I did not have an ideal childhood, but it was pretty close. I feel that the 'small town' values instilled then have served me well throughout life.
Finally, I've been reading an anthology of science fiction novellas that my friend Will lent me which includes The Time Machine by H. G. Wells. That particular story reminded me why 'science' fiction is also known as 'speculative' fiction. Many of the stories about a dystopian future are filled with social and political commentary, such the aforementioned Time Machine as well as Fahrenheit 451 and 1984. And though it painted a rosier picture, Edward Bellamy's Looking Backward also falls into the realm of social and political commentary.
Enough for now. I have more reading to do!!
Peace and Love,
Joe
First, thanks for all the kind words for my mother-in-law. Her passing was not unexpected, but the finality of the actual event is a jolt. Fortunately, all of her children were in town for her final days. Elaine is grieving but is at peace, as am I.
Moving on, I've been experiencing what I think is an odd phenomenon in my sleeping patterns, maybe since I'm sleeping so much. But my dreams will often reference a previous dream. For instance, a few weeks ago, I dreamt that I was going to build a fence with my brother-in-law Frenchy at the end of his yard. Then at least twice since then, my dreams have sort of picked up where that one left off. And since the original dream was so vivid, I began to wonder if it was real. Of course, that possibility is highly unlikely as I live 1000 miles away, he's 81, and I'm disabled.
And speaking of memories, I recently got an email from my childhood friend Anthony, who still lives in the old hometown. His message brought back a flood of pleasant memories of that time and place. Now I did not have an ideal childhood, but it was pretty close. I feel that the 'small town' values instilled then have served me well throughout life.
Finally, I've been reading an anthology of science fiction novellas that my friend Will lent me which includes The Time Machine by H. G. Wells. That particular story reminded me why 'science' fiction is also known as 'speculative' fiction. Many of the stories about a dystopian future are filled with social and political commentary, such the aforementioned Time Machine as well as Fahrenheit 451 and 1984. And though it painted a rosier picture, Edward Bellamy's Looking Backward also falls into the realm of social and political commentary.
Enough for now. I have more reading to do!!
Peace and Love,
Joe
Thursday, June 9, 2016
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
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
Friday, June 3, 2016
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
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
Friday, March 25, 2016
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 1st. 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
Tuesday, February 9, 2016
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
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
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