It's been a couple of weeks since my last post, so I thought I'd catch you up. Well, nothing to report.
I'm doing my swallowing exercises on a daily basis, almost always getting in the 5 sets they want me to do. I've finally found the one good thing about dealing with ATL traffic to and from work--waiting at red lights gives me a chance to do my exercises without being distracted from my driving.
I have started to make more blended meals (I don't use the trendy s-word) and enjoy them a lot. We went out to dinner last night and I had a big bowl of pureed Mexican chicken soup--definitely the most enjoyable meal I've had since June 18th.
The biggest challenge with eating anything other than my liquid chicken is figuring out how well I'm doing with my daily nutrition. For all its lack of appeal, three meals a day of liquid chicken gives me exactly what I need for calories and nutrients. If I substitute for it with blended food, it becomes a guessing game. So as much as I'd like to eat more orally, I am sticking to liquid chicken for the majority of my meals.
Please keep the Good Vibes coming, and add some extra ones to get the damn rain to stop here!
mike
Wednesday, September 30, 2015
Friday, September 18, 2015
Extra Good Vibes needed
I met with Dr. Wadsworth's physician's assistant last week and got a very bad bit of news about my progress in the food swallowing department. While I have been able to eat soft foods like yogurt, pudding, and recently--smoothies, I am making no progress towards being able to eat solid foods. I knew that, but what Lauren told me next really got my attention. The 'window' for showing signs of getting back to eating solid foods is closing for me. If I don't make some significant progress in the next month or so, they will start to talk about Life Plan B for me to get food into my body.
While no one really thinks much about what happens to a bite of food once it leaves the palate and starts down to the stomach, it's really a very complicated and intricate process, involving a lot of small muscles, and a number of anatomical structures working in a strict sequence, all coordinated by nerves in the tongue, mouth, throat, neck, and esophagus. Bottom line for me--almost every one of those parts has been compromised by radiation and the surgeries in the past year and a half. As Lauren told me, sometimes those functions just can't recover from the accumulated effects.
And, a little of what I can swallow leaks into my windpipe--called aspiration. There is a reflex action that occurs when food goes where it shouldn't--we gag and cough when it "goes down the wrong pipe." While not a fun thing, it does show that the body is aware of the problem and is reacting to it. I don't have that reflex any more--thanks to radiation. So, unless the aspiration stops, I'm at risk for infection in my chest and lungs. There are only two ways to stop the aspiration--get stronger and more efficient at swallowing food, or eat no food orally.
I have my next swallow test on October 14. Lauren thinks this will be the best indicator of my ability to eventually progress past more than soft food, by comparing it to my previous tests. If there are no signs of progress, then they will start to talk about Life Plan B--how to go the rest of my life with eating only liquid and very soft foods--basically what I'm doing now. While I've been accepting of the feeding tube and freakin' smoothies as a temporary eating plan, the thought of doing that for the rest of my life (and the possibility of infections from aspirations) scares the hell out of me. This is a huge quality of life situation.
You know what's coming. We need Team Mike to send more and stronger good vibes leading up to the October 14 swallow test. I have doubled up on my swallowing exercises to give my body every chance to show signs of improvement. I know that if I show some improvement I won't leave the test and gulp down a green chili cheeseburger. I am hoping at the most for some sign of improvement that will keep alive the hopes that I can eventually return to the kind of foods I could eat before the surgeries happened. To me, that would be enough of a miracle.
mike
While no one really thinks much about what happens to a bite of food once it leaves the palate and starts down to the stomach, it's really a very complicated and intricate process, involving a lot of small muscles, and a number of anatomical structures working in a strict sequence, all coordinated by nerves in the tongue, mouth, throat, neck, and esophagus. Bottom line for me--almost every one of those parts has been compromised by radiation and the surgeries in the past year and a half. As Lauren told me, sometimes those functions just can't recover from the accumulated effects.
And, a little of what I can swallow leaks into my windpipe--called aspiration. There is a reflex action that occurs when food goes where it shouldn't--we gag and cough when it "goes down the wrong pipe." While not a fun thing, it does show that the body is aware of the problem and is reacting to it. I don't have that reflex any more--thanks to radiation. So, unless the aspiration stops, I'm at risk for infection in my chest and lungs. There are only two ways to stop the aspiration--get stronger and more efficient at swallowing food, or eat no food orally.
I have my next swallow test on October 14. Lauren thinks this will be the best indicator of my ability to eventually progress past more than soft food, by comparing it to my previous tests. If there are no signs of progress, then they will start to talk about Life Plan B--how to go the rest of my life with eating only liquid and very soft foods--basically what I'm doing now. While I've been accepting of the feeding tube and freakin' smoothies as a temporary eating plan, the thought of doing that for the rest of my life (and the possibility of infections from aspirations) scares the hell out of me. This is a huge quality of life situation.
You know what's coming. We need Team Mike to send more and stronger good vibes leading up to the October 14 swallow test. I have doubled up on my swallowing exercises to give my body every chance to show signs of improvement. I know that if I show some improvement I won't leave the test and gulp down a green chili cheeseburger. I am hoping at the most for some sign of improvement that will keep alive the hopes that I can eventually return to the kind of foods I could eat before the surgeries happened. To me, that would be enough of a miracle.
mike
Monday, September 7, 2015
First Stay at Good Vibes, Terrible News About a Friend
The cosmic joker who has been messing with me for 7 years now must have read my recent blog where I declared our new vacation home in the GA mountains as "Cancer revenge" and decided that it was time to show me how wrong I was. I can run, but never hide from the Prairie Dogs for too long in my life--it seems like they will always remind me that I have not beaten cancer--I've only survived it.
Terry and I were enjoying our first stay at Good Vibes, working hard on making it our own, and really liking the night sky we got. It gives Deck Time a whole new meaning. On Friday I got an email that a colleague and friend from Cal State Northridge had been taken off life support--the next day I got a follow up email that he had passed away. Here is the short announcement from the CSUN President's office:
It is with very deep sadness that we share the unfortunate news that Faculty President and Professor of Kinesiology, Dr. Shane Frehlich, passed away Friday evening after his long battle with Acute Myeloid Leukemia. Please keep his family in your thoughts and prayers during this sad and difficult time. His wife Dianne, his 3 year old sons Max and Miles, and his 11 month old son Jonas appreciate all of the love and support the CSUN faculty, staff, and students have shown them these past couple of years.
Dianne Harrison, President
(I found this longer announcement today):
I knew Shane for many years, mostly as members in the National Association for Kinesiology in Higher Education. He was a leader in NAKHE and was definitely on a path to be elected as its President before too long.
About 3 years ago, just before his twin sons were to come home after many months in the hospital due to premature births, Shane was first diagnosed with Leukemia. Shane talked with me a few times about Cancer World. He fought really hard to go into remission after about a year, and to return to his work at CSUN. He was feeling well enough about the future for he and Dianne to have their third child last year. I thought that he was well on his way to a long life as a cancer survivor, only to learn the terrible news this weekend, which was a huge shock to me.
There are very few genuinely good people in this world, but Shane was one of them. He was a great family man, a respected professor, a good citizen of NAKHE, and a friend to all he met. Anyone who spoke of him would always start or end with "He's such a nice guy."
(I found another story today):
http://www.gofundme.com/FrehlichFamily
The GoFundMe page is there for the story, not to solicit donations.
Beyond the fact of Shane's death from cancer, his passing has caused me to re-think my own current condition. Since the jaw surgery in June I have found myself often bemoaning my condition and fighting off anger--thinking more about what I can't do and have lost, rather than what I am still able to do. I was starting to forget my own motto that "It sure beats the alternative." Well, the 'alternative' slapped me in the face in the form of Shane's passing, and has caused me to once again be thankful for so many things I still have as a cancer survivor--a loving and supportive wife, great family and friends, a rewarding career, and yes, even that yucky Isosource I inject into my tummy three times a day.
While we were having lunch yesterday, I stole one of Terry's french fries just to see if I could eat one bite of it. I was not even close to being able to swallow it--but I sure could taste it! More evidence that without that yucky Isosource liquid, I'd be unable to function at any level short of nursing care at home.
This has also reminding me that my worst fear is that I will have to face another direct battle with the Prairie Dogs, as Shane did and lost. As long as that doesn't happen, I know I can handle the rest of what Cancer World holds for me. As my brother Jim once told me, "Any day you can get out of bed and both feet hit the floor at about the same time, you're doing OK."
That will always beat the alternative.
Rest in Peace, Shane.
Mike
Terry and I were enjoying our first stay at Good Vibes, working hard on making it our own, and really liking the night sky we got. It gives Deck Time a whole new meaning. On Friday I got an email that a colleague and friend from Cal State Northridge had been taken off life support--the next day I got a follow up email that he had passed away. Here is the short announcement from the CSUN President's office:
It is with very deep sadness that we share the unfortunate news that Faculty President and Professor of Kinesiology, Dr. Shane Frehlich, passed away Friday evening after his long battle with Acute Myeloid Leukemia. Please keep his family in your thoughts and prayers during this sad and difficult time. His wife Dianne, his 3 year old sons Max and Miles, and his 11 month old son Jonas appreciate all of the love and support the CSUN faculty, staff, and students have shown them these past couple of years.
Dianne Harrison, President
(I found this longer announcement today):
I knew Shane for many years, mostly as members in the National Association for Kinesiology in Higher Education. He was a leader in NAKHE and was definitely on a path to be elected as its President before too long.
About 3 years ago, just before his twin sons were to come home after many months in the hospital due to premature births, Shane was first diagnosed with Leukemia. Shane talked with me a few times about Cancer World. He fought really hard to go into remission after about a year, and to return to his work at CSUN. He was feeling well enough about the future for he and Dianne to have their third child last year. I thought that he was well on his way to a long life as a cancer survivor, only to learn the terrible news this weekend, which was a huge shock to me.
There are very few genuinely good people in this world, but Shane was one of them. He was a great family man, a respected professor, a good citizen of NAKHE, and a friend to all he met. Anyone who spoke of him would always start or end with "He's such a nice guy."
(I found another story today):
http://www.gofundme.com/FrehlichFamily
The GoFundMe page is there for the story, not to solicit donations.
Beyond the fact of Shane's death from cancer, his passing has caused me to re-think my own current condition. Since the jaw surgery in June I have found myself often bemoaning my condition and fighting off anger--thinking more about what I can't do and have lost, rather than what I am still able to do. I was starting to forget my own motto that "It sure beats the alternative." Well, the 'alternative' slapped me in the face in the form of Shane's passing, and has caused me to once again be thankful for so many things I still have as a cancer survivor--a loving and supportive wife, great family and friends, a rewarding career, and yes, even that yucky Isosource I inject into my tummy three times a day.
While we were having lunch yesterday, I stole one of Terry's french fries just to see if I could eat one bite of it. I was not even close to being able to swallow it--but I sure could taste it! More evidence that without that yucky Isosource liquid, I'd be unable to function at any level short of nursing care at home.
This has also reminding me that my worst fear is that I will have to face another direct battle with the Prairie Dogs, as Shane did and lost. As long as that doesn't happen, I know I can handle the rest of what Cancer World holds for me. As my brother Jim once told me, "Any day you can get out of bed and both feet hit the floor at about the same time, you're doing OK."
That will always beat the alternative.
Rest in Peace, Shane.
Mike
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