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
Monday, November 30, 2015
Wednesday, November 25, 2015
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
Monday, November 16, 2015
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
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
Thursday, November 12, 2015
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
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
Saturday, November 7, 2015
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
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
Friday, November 6, 2015
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
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
Monday, November 2, 2015
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
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
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