Since my own cancer was diagnosed in 2009, we have had a number of friends and neighbors who have also been diagnosed. Now the prairie dogs have surfaced even closer to us. Terry's daughter, Olivia-Shea has been diagnosed with stage 1B cervical cancer, which means the spot is visible but contained to that area. No evidence that it has spread beyond that area.
She will have an outpatient procedure on February 26th to remove the cancer tissue. At this time it would appear it has been caught early enough--but it has scared the hell out of her and her mother--as is understandable.
Please send your best Team Mike Good Vibes to Olivia-Shea before, during, and after her procedure. We'll keep you updated after we get the results of the surgery and any follow up reports.
Mike and Terry
Wednesday, February 17, 2016
May I Have More Yogurt, Please?
Well, the theme from my last post turned into a bit of a bad story this past weekend. After several weeks of being tired of eating yogurt and my other limited selections of foods, things developed into a perfect storm that ended with me in the Emory ER on Monday. Make that "us," since Terry was with me the whole time.
Over the past few weeks I've not had much of an appetite--as I said before, probably just tired of eating much of the same foods over and over. Yogurt fatigue, I'll call it. The reality for me is that I have to drink a lot of water at every meal to help me swallow my food. So, if I eat less, I hydrate less. And, as I've now learned, when someone gets dehydrated, it can lead to an irregular heartbeat--atrial fibulation (a-fib), which I have had on occasion. The combination of fewer calories and dehydration also contributed to a general feeling of nausea and unsteadiness on my feet.
I woke up on Saturday feeling terrible, was very unsteady, and vomited several times during the day. All of that got a little better on Sunday, but come Monday it was time to go the the ER. The cardiologist found the a-fib, and the neurologist figured out the unsteadiness due to dehydration. After 6 hours there, and a bag of fluids, I was released--but with lots of advice (warnings, actually) about how this happened and how to prevent it. Pretty simple--more calories and more fluids every day. So, I've now started to track my caloric intake with a software app, and get back in the habit of drinking lots of fluids every day--and not just at mealtimes (such as those are).
I have a small procedure scheduled in late March to address the a-fib thing--a cardio inversion, and I'm on new meds for that as well. Hopefully that will do it.
But, all of this serves as yet another reminder that life as a cancer survivor does not necessarily mean a life without cancer playing some role. In my case, the permanent side effects from my treatments seven years ago.
Truth be told, I hate having to be vigilant with things that are basically nuisances, like taking meds, counting calories, watching my fluid intake, and making sure I eat enough yogurt and Boost every day. I'd much rather just go about my daily business and not worry about that shit. But, I don't have that luxury any more--cancer and its treatments have taken that away from me. I need to be much better at watching all of those things every day, to make sure I don't create another perfect storm that takes me to the ER, or worse, again.
mike
Over the past few weeks I've not had much of an appetite--as I said before, probably just tired of eating much of the same foods over and over. Yogurt fatigue, I'll call it. The reality for me is that I have to drink a lot of water at every meal to help me swallow my food. So, if I eat less, I hydrate less. And, as I've now learned, when someone gets dehydrated, it can lead to an irregular heartbeat--atrial fibulation (a-fib), which I have had on occasion. The combination of fewer calories and dehydration also contributed to a general feeling of nausea and unsteadiness on my feet.
I woke up on Saturday feeling terrible, was very unsteady, and vomited several times during the day. All of that got a little better on Sunday, but come Monday it was time to go the the ER. The cardiologist found the a-fib, and the neurologist figured out the unsteadiness due to dehydration. After 6 hours there, and a bag of fluids, I was released--but with lots of advice (warnings, actually) about how this happened and how to prevent it. Pretty simple--more calories and more fluids every day. So, I've now started to track my caloric intake with a software app, and get back in the habit of drinking lots of fluids every day--and not just at mealtimes (such as those are).
I have a small procedure scheduled in late March to address the a-fib thing--a cardio inversion, and I'm on new meds for that as well. Hopefully that will do it.
But, all of this serves as yet another reminder that life as a cancer survivor does not necessarily mean a life without cancer playing some role. In my case, the permanent side effects from my treatments seven years ago.
Truth be told, I hate having to be vigilant with things that are basically nuisances, like taking meds, counting calories, watching my fluid intake, and making sure I eat enough yogurt and Boost every day. I'd much rather just go about my daily business and not worry about that shit. But, I don't have that luxury any more--cancer and its treatments have taken that away from me. I need to be much better at watching all of those things every day, to make sure I don't create another perfect storm that takes me to the ER, or worse, again.
mike
Friday, January 22, 2016
When the going gets tough, the tough eat yogurt
It's 10:55 PM on Friday--make that 10:56 PM now, and I am eating a Publix Premium Peach Greek Yogurt to keep my tummy from growling so I can get some sleep tonight.
Those little black plastic tubs of cultures (what the hell does that really mean, anyway?) have become my default food source lately--what I use to get an easily ingestible 150 or so calories when I need them, about 3-4 times every day.
Beyond liquid foods like smoothies, Boost, and some pureed soups, everything else I can eat now is a struggle--thus the reliance on yogurt. Beer, wine and bourbon are technically not foods, so are exceptions--but they do provide substantial calories, and a buzz, in a pinch. Thank you, Mr. Daniels.
Eating is a struggle, and a long one at every meal. Terry and I start a meal together and by the time I'm tossing half of mine into the garbage, she's finished hers, done the dishes, put the leftovers in the fridge, and poured her post-dinner glass of wine. Thus, the need for yogurts at 10:00 am, 2:00 PM, 5:00 PM, and now 11:13 PM.
For many, eating food is a pleasure--something to look forward and savor. For me, eating has become something I know I have to do, but with limited choices, and only occasional enjoyment. And except for eating at home with Terry, something I avoid at all costs in social settings. I went to a Waffle House this morning with a good friend, and managed to eat about half of an omelet and a few bites of my hash browns (covered) before I couldn't fake the struggle any more. I took a to-go box to save face, but ended up tossing it out, without eating any more later. Just not worth the struggle.
When I got home yesterday, needing my 5:00 PM snack after work, I opened the fridge and saw a bunch of those black plastic Publix Premium yogurt tubs staring at me. I had to take a long look at them, wondering if I could stomach yet another one. After a few minutes, I did pick one (the flavor didn't freaking matter) and I ate it--as a choice of mind over matter, yet again. Yes, when the going gets tough, the tough eat yogurt--to stay alive.
It's come to that.
mike
Those little black plastic tubs of cultures (what the hell does that really mean, anyway?) have become my default food source lately--what I use to get an easily ingestible 150 or so calories when I need them, about 3-4 times every day.
Beyond liquid foods like smoothies, Boost, and some pureed soups, everything else I can eat now is a struggle--thus the reliance on yogurt. Beer, wine and bourbon are technically not foods, so are exceptions--but they do provide substantial calories, and a buzz, in a pinch. Thank you, Mr. Daniels.
Eating is a struggle, and a long one at every meal. Terry and I start a meal together and by the time I'm tossing half of mine into the garbage, she's finished hers, done the dishes, put the leftovers in the fridge, and poured her post-dinner glass of wine. Thus, the need for yogurts at 10:00 am, 2:00 PM, 5:00 PM, and now 11:13 PM.
For many, eating food is a pleasure--something to look forward and savor. For me, eating has become something I know I have to do, but with limited choices, and only occasional enjoyment. And except for eating at home with Terry, something I avoid at all costs in social settings. I went to a Waffle House this morning with a good friend, and managed to eat about half of an omelet and a few bites of my hash browns (covered) before I couldn't fake the struggle any more. I took a to-go box to save face, but ended up tossing it out, without eating any more later. Just not worth the struggle.
When I got home yesterday, needing my 5:00 PM snack after work, I opened the fridge and saw a bunch of those black plastic Publix Premium yogurt tubs staring at me. I had to take a long look at them, wondering if I could stomach yet another one. After a few minutes, I did pick one (the flavor didn't freaking matter) and I ate it--as a choice of mind over matter, yet again. Yes, when the going gets tough, the tough eat yogurt--to stay alive.
It's come to that.
mike
Thursday, January 14, 2016
Shane Frehlich Memorial and video
You may remember Shane Frehlich from earlier posts on this blog. He passed away in 2015 from a rare form of Leukemia. I attended a professional conference in San Diego last week, where a touching memorial to Shane was given by some of his closest friends and colleagues at California State University Northridge, where he was a professor.
As part of that memorial they showed a short video produced at CSUN to show how Shane had touched the lives of so many people on that campus. I was able to get a link to that video, so you can put a face to his name, and see just how much he was loved by his family and his CSUN colleagues:
I did not participate actively in the memorial in San Diego. I watched the video and listened to the handful of people who did say something about Shane and what he meant to them and our association. All I could think of was "Why me?" Why have I survived cancer, when so many others who fought just as hard (and Shane twice) did not make it? That has been a haunting question for the past 7 years, and I didn't want to make that the subject of any comments I made about Shane at that moment. It was his moment and I didn't want to take away from that with words about myself. All I could think of was "Why me?" so I sat quietly among the others in the room.
Sometimes I fool myself into thinking that I have beaten cancer entirely and that there are only physical scars to show from my battles with the Prairie Dogs. Again, the truth is, I have not beaten cancer entirely--I've only survived it for 7 years, and events like Shane's memorial serve to bring that reality back to me.
mike
As part of that memorial they showed a short video produced at CSUN to show how Shane had touched the lives of so many people on that campus. I was able to get a link to that video, so you can put a face to his name, and see just how much he was loved by his family and his CSUN colleagues:
I did not participate actively in the memorial in San Diego. I watched the video and listened to the handful of people who did say something about Shane and what he meant to them and our association. All I could think of was "Why me?" Why have I survived cancer, when so many others who fought just as hard (and Shane twice) did not make it? That has been a haunting question for the past 7 years, and I didn't want to make that the subject of any comments I made about Shane at that moment. It was his moment and I didn't want to take away from that with words about myself. All I could think of was "Why me?" so I sat quietly among the others in the room.
Sometimes I fool myself into thinking that I have beaten cancer entirely and that there are only physical scars to show from my battles with the Prairie Dogs. Again, the truth is, I have not beaten cancer entirely--I've only survived it for 7 years, and events like Shane's memorial serve to bring that reality back to me.
mike
Thursday, January 7, 2016
A Scare about Jerry, and Some Good News
Terry read a Facebook post last week that Jerry had been taken back for emergency surgery--that was all we knew for a few days, and we were very concerned. We heard yesterday that the surgery was for some complications from infections from the first surgery, and it went very well. We also got more details about his initial surgery--they removed some cancerous cells (with good margins) and some lymph nodes, but there was no evidence that it had spread to other areas. Also, they are not prescribing chemo or radiation at this time. All in all, good news, and another example of Team Mike's Good Vibes making a difference.
Mike
Mike
Thursday, December 24, 2015
Merry Christmas, Good News about Jerry, and Book in Progress
Many of you know about Terry's hand-painted annual holiday cards, but for those who don't, I scanned and inserted this year's card--a great multi-media image of Good Vibes with a bit of snow on it and under the rare Christmas full "Cold Moon" we'd be seeing, if it weren't 100% clouded over. This won't happen again until 2034--I'm planning on being alive for it at 82, but might need some help finding it in the night sky, and remembering it the next day.
The idea behind the card is to celebrate our second best kind of Cancer Revenge ever--a place we can get away to and share with family and friends for years to come. The best revenge of all, obviously, is surviving the Prairie Dogs for 7 years--all with such great support from Team Mike.
Team Mike came through again this week. We learned yesterday that our friend Jerry had his surgery on Monday and is resting in the hospital. We were told that the doctors think the surgery was so successful that he won't need chemo or radiation as followups. Personally, I'm hoping he's back on his feet and working soon--I need a haircut.
However you say it, and however you celebrate it, please accept my thanks for helping me to see another Holiday Season as a cancer survivor. FYI, I am going to write a book in 2016 about my journey through Cancer World, and I want Team Mike to be a big part of our story. So, be on the lookout for requests to think back about how you contributed to the team effort along the way, so I can give you the credit you deserve--well, everyone except Nurse Kimmie, who will get her just reward.
Mike
Thursday, December 10, 2015
Need Good Vibes for Jerry
Jerry L. cuts my hair, and Terry's, in his small shop in an ATL neighborhood. On Monday, he told Terry that his recent colonoscopy revealed some areas of concern and that he was going to see a surgeon soon to hear his treatment options. I spoke with Jerry yesterday to make an appointment for early next week, and to hear more about his diagnosis and treatment plan. Things have developed faster, and he's now not taking any appointments for the foreseeable future. We don't know any details, but we are alarmed.
Jerry and his co-worker, Tara, have been wonderful to me since my own treatments started, offering to come to our house or the hospital to cut my hair.
Please send your best Good Vibes to Jerry. He is truly one of those few really "nice guys" you come across in life, so we want to give him any and all support we can muster from Team Mike.
I'll post more as we learn more--hopefully soon.
Mike
Jerry and his co-worker, Tara, have been wonderful to me since my own treatments started, offering to come to our house or the hospital to cut my hair.
Please send your best Good Vibes to Jerry. He is truly one of those few really "nice guys" you come across in life, so we want to give him any and all support we can muster from Team Mike.
I'll post more as we learn more--hopefully soon.
Mike
Thursday, December 3, 2015
Time to Start Rebuilding this Brokedown Palace
Picking up where the last entry ended, there is a song written by Robert Hunter and Jerry Garcia that has haunted me many times during my stay in Cancer World. It's called "Brokedown Palace" and like many Hunter/Garcia songs, it can have many interpretations. My own is that it's a story being told by someone whose body has given out (thus the brokedown palace) and they are preparing for the inevitability of death:
Goin' to leave this brokedown palace
On my hands and my knees I will roll, roll, roll
Going home, going home
by the waterside I will rest my bones
After my surgeries last year and this year, I would quietly get very emotional when I heard this song, and often had to turn it off. While I never thought that my death was close, the song did remind me that my body has been damaged in so many ways from seven years of cumulative side effects from chemo and radiation, and surgeries. It is a truly brokedown palace in many ways:
--my left leg is about 90% functional which causes me to wobble sometimes
--my left arm has a large scar from the 2015 surgery and is about 80% functional
--my left hand has restricted range of motion and reduced grip strength
--I can't raise my left arm laterally above that shoulder
--my left and right shoulders are not in balance
--my neck area has large areas of fibrosis and loss of sensation
--I have only five bottom teeth, all on the right side
--I have hair growing in my mouth, from the patch of arm skin grafted there this June
--I have a noticeable speech impediment, especially as the day goes on and I get fatigued
--I've had both cataracts replaced
--my lower face is disfigured
I'm sure there's more, but you get the picture.
But, the point here is not to feel sorry for myself, or to seek pity. As my oldest brother Jim once told me "Any day you can get out of bed with both feet hitting the floor at about the same time, is a good day." I can do that, and with the second dreaded PEG tube in the past, and regaining enough function to start exercising again, I can begin to rebuild this brokedown palace. I know it will take a long time, and it will be a difficult road after seven years of physical setbacks and creeping age, but it's time to start.
But, there is another motive at work here. One of the realities of life in Cancer World is that every major episode--be it damage from treatments, recovering from surgery, or (God forbid) a recurrence--takes an extreme toll on one's body and psyche. Some people fight very hard mentally, but the accumulated effects on their body can sometimes not be reversed, and they just give out physically. While I want to get stronger and healthier to feel better for its own benefits, I also want my body to be as ready as it can for the possibility that those persistent Prairie Dogs might show their ugly heads again. If they were to surface again right now, I have serious doubts about my ability to fight them off. I need to get rid of those doubts.
When all of this started--almost 7 years ago exactly now--I defiantly called my blog "Mike Metzler Beats Cancer" for good reason. I was full of enough piss and vinegar to will my body through the coming ordeals, and I was determined to beat the Prairie Dogs into submission. After these seven years, I know that I have not beaten cancer--it has changed my life and Terry's life in profound ways that will never end. But, I have survived cancer for seven years and counting, and looking back--that was the more realistic goal to have
So, the best way to keep surviving and to be ready if the Prairie Dogs come at me again, is to rebuild this brokedown palace into a stronger, resilient structure.
mike
Goin' to leave this brokedown palace
On my hands and my knees I will roll, roll, roll
Going home, going home
by the waterside I will rest my bones
After my surgeries last year and this year, I would quietly get very emotional when I heard this song, and often had to turn it off. While I never thought that my death was close, the song did remind me that my body has been damaged in so many ways from seven years of cumulative side effects from chemo and radiation, and surgeries. It is a truly brokedown palace in many ways:
--my left leg is about 90% functional which causes me to wobble sometimes
--my left arm has a large scar from the 2015 surgery and is about 80% functional
--my left hand has restricted range of motion and reduced grip strength
--I can't raise my left arm laterally above that shoulder
--my left and right shoulders are not in balance
--my neck area has large areas of fibrosis and loss of sensation
--I have only five bottom teeth, all on the right side
--I have hair growing in my mouth, from the patch of arm skin grafted there this June
--I have a noticeable speech impediment, especially as the day goes on and I get fatigued
--I've had both cataracts replaced
--my lower face is disfigured
I'm sure there's more, but you get the picture.
But, the point here is not to feel sorry for myself, or to seek pity. As my oldest brother Jim once told me "Any day you can get out of bed with both feet hitting the floor at about the same time, is a good day." I can do that, and with the second dreaded PEG tube in the past, and regaining enough function to start exercising again, I can begin to rebuild this brokedown palace. I know it will take a long time, and it will be a difficult road after seven years of physical setbacks and creeping age, but it's time to start.
But, there is another motive at work here. One of the realities of life in Cancer World is that every major episode--be it damage from treatments, recovering from surgery, or (God forbid) a recurrence--takes an extreme toll on one's body and psyche. Some people fight very hard mentally, but the accumulated effects on their body can sometimes not be reversed, and they just give out physically. While I want to get stronger and healthier to feel better for its own benefits, I also want my body to be as ready as it can for the possibility that those persistent Prairie Dogs might show their ugly heads again. If they were to surface again right now, I have serious doubts about my ability to fight them off. I need to get rid of those doubts.
When all of this started--almost 7 years ago exactly now--I defiantly called my blog "Mike Metzler Beats Cancer" for good reason. I was full of enough piss and vinegar to will my body through the coming ordeals, and I was determined to beat the Prairie Dogs into submission. After these seven years, I know that I have not beaten cancer--it has changed my life and Terry's life in profound ways that will never end. But, I have survived cancer for seven years and counting, and looking back--that was the more realistic goal to have
So, the best way to keep surviving and to be ready if the Prairie Dogs come at me again, is to rebuild this brokedown palace into a stronger, resilient structure.
mike
Tuesday, December 1, 2015
Tubeless (and Painless)
The only thing I was thinking about more than having the PEG tube out of my body was the sharp pain I had when the first one was taken out in 2009. That one really smarted, and even more because I was not ready for it to sting so much.
So, this time I thought I'd ask for a local pain med (too early in the day for full-on opioids) and was getting ready to do that when the nurse said "All done." Huh?
Turns out this was different type of tube, and once she deflated the little balloon holding it in place, it pulled right out--barely even a tug needed. As Terry said, had we known that we could have taken it out at home ourselves--probably why they didn't tell us in the first place.
So, I'm feeling good knowing that I don't have to manage that intruding tube any more, and worry about accidentally tugging on it as I get dressed and undressed each time, or look at it dangling out of my tummy in the mirror every morning. Believe me, there will be no post-partem blues with this!
A couple hours after getting back to my office I got an email from Terry, saying that I have an appointment with a doctor on Friday to start the consultations about dental work. That will probably be a long and sometimes painful process, but it does mark progress and will get me closer to knowing what my long-term eating abilities will be. I am resigned that my choices will be limited from here on out, but anxious to know just what my options will be and to figure out how to stay at a safe and healthy weight going forward.
Today was a good day. I'll savor that until the next round of work on my Brokedown Palace starts.
Mike
So, this time I thought I'd ask for a local pain med (too early in the day for full-on opioids) and was getting ready to do that when the nurse said "All done." Huh?
Turns out this was different type of tube, and once she deflated the little balloon holding it in place, it pulled right out--barely even a tug needed. As Terry said, had we known that we could have taken it out at home ourselves--probably why they didn't tell us in the first place.
So, I'm feeling good knowing that I don't have to manage that intruding tube any more, and worry about accidentally tugging on it as I get dressed and undressed each time, or look at it dangling out of my tummy in the mirror every morning. Believe me, there will be no post-partem blues with this!
A couple hours after getting back to my office I got an email from Terry, saying that I have an appointment with a doctor on Friday to start the consultations about dental work. That will probably be a long and sometimes painful process, but it does mark progress and will get me closer to knowing what my long-term eating abilities will be. I am resigned that my choices will be limited from here on out, but anxious to know just what my options will be and to figure out how to stay at a safe and healthy weight going forward.
Today was a good day. I'll savor that until the next round of work on my Brokedown Palace starts.
Mike
Thursday, November 26, 2015
Almost Tubeless on Thanksgiving
Happy Thanksgiving!
The date for the PEG tube removal is set--this coming Tuesday afternoon. It feels like I've been given another in a long series of Get Out Of Jail Cards, and I can't wait. Even though I've not used the tube for feeding in over three weeks, it's still there and in my conscientiousness throughout every day. I know that its removal won't change my restricted choices for eating, but it will give me some psychological and physical freedoms that I've not had since the surgery on June 19th. And, it marks a real achievement in my progress towards recovery from that surgery.
Even with that progress, we got a reminder last evening that this is still very dicey situation that can't be taken for granted. We ordered out for Chinese food, as apparently did a hundred others in our area, which accounted for the nearly 90 minute wait to get a wrong order. I ordered the veggie chow mein, thinking I could eat the rice noodles with no problem. The veggies came, but with regular rice, not noodles. Terry chopped up the veggies small for me, but with the rice mixed in, it caused a blockage in my throat that took over 30 minutes to clear. I could breath with no problem, so was in no danger--but we were halfway to our one hour time limit of going to the ER when this has happened in the past. Not a good memory. But, it cleared and I was able to finish my dinner with a Boost--and some wine.
We had a great Thanksgiving dinner at Terry's family in Snellviille (where "Everybody is Somebody" and the seat belt usage record still holds at 94%). I was able to eat almost everything, except the ham and turkey, but that was OK. It was great to see a full plate of food in front or me, and eat every bite of it--even if it took about 45 minutes to finish. If that's my future, I can handle it.
Speaking of the future, we met with Dr. Roser on Monday and he is very pleased with the way my mouth is healing. He has referred me to another doctor who will assess me for dental work going forward. The big question is whether I'll get a very long implanted bridge or a full denture to replace the lower teeth I've lost in the last two surgeries. To be honest, I'm for whatever it takes to get me back to some semblance of regularity with chewing and swallowing. I'm resigned to the real likelihood that I will never be able to savor a juicy steak, bite into a sub sandwhich, or eat a green chili cheeseburger whole again, or (and this one really hurts) enjoy a slice of Rosa's pizza without deconstructing it first--but I just want to figure out what my parameters will be, and move on from there.
In the end, I'm like so many other tens of thousands of cancer survivors. We can never get back to our lives the way they were before we were infected by the Prairie Dogs. The best we can hope for is to accept the "new normal" of whatever surviving offers and live our lives to the fullest extent possible. There can be no better Thanksgiving than that.
Well, maybe there can. Notre Dame beat Boston College at Fenway Park last Saturday, but the Fumbling Irish had 5 turnovers and barely hung on to beat a lowly 3-8 BC team, with not one, but two, true freshmen quarterbacks. For its miscues (and silly all-green uniforms), ND has fallen out of the top four teams to make it into the national championship playoffs.
After how ND desecrated Fenway Park and its Green Monster, I'm also thankful for that bit of justice.
Right, Paully?
Mike
The date for the PEG tube removal is set--this coming Tuesday afternoon. It feels like I've been given another in a long series of Get Out Of Jail Cards, and I can't wait. Even though I've not used the tube for feeding in over three weeks, it's still there and in my conscientiousness throughout every day. I know that its removal won't change my restricted choices for eating, but it will give me some psychological and physical freedoms that I've not had since the surgery on June 19th. And, it marks a real achievement in my progress towards recovery from that surgery.
Even with that progress, we got a reminder last evening that this is still very dicey situation that can't be taken for granted. We ordered out for Chinese food, as apparently did a hundred others in our area, which accounted for the nearly 90 minute wait to get a wrong order. I ordered the veggie chow mein, thinking I could eat the rice noodles with no problem. The veggies came, but with regular rice, not noodles. Terry chopped up the veggies small for me, but with the rice mixed in, it caused a blockage in my throat that took over 30 minutes to clear. I could breath with no problem, so was in no danger--but we were halfway to our one hour time limit of going to the ER when this has happened in the past. Not a good memory. But, it cleared and I was able to finish my dinner with a Boost--and some wine.
We had a great Thanksgiving dinner at Terry's family in Snellviille (where "Everybody is Somebody" and the seat belt usage record still holds at 94%). I was able to eat almost everything, except the ham and turkey, but that was OK. It was great to see a full plate of food in front or me, and eat every bite of it--even if it took about 45 minutes to finish. If that's my future, I can handle it.
Speaking of the future, we met with Dr. Roser on Monday and he is very pleased with the way my mouth is healing. He has referred me to another doctor who will assess me for dental work going forward. The big question is whether I'll get a very long implanted bridge or a full denture to replace the lower teeth I've lost in the last two surgeries. To be honest, I'm for whatever it takes to get me back to some semblance of regularity with chewing and swallowing. I'm resigned to the real likelihood that I will never be able to savor a juicy steak, bite into a sub sandwhich, or eat a green chili cheeseburger whole again, or (and this one really hurts) enjoy a slice of Rosa's pizza without deconstructing it first--but I just want to figure out what my parameters will be, and move on from there.
In the end, I'm like so many other tens of thousands of cancer survivors. We can never get back to our lives the way they were before we were infected by the Prairie Dogs. The best we can hope for is to accept the "new normal" of whatever surviving offers and live our lives to the fullest extent possible. There can be no better Thanksgiving than that.
Well, maybe there can. Notre Dame beat Boston College at Fenway Park last Saturday, but the Fumbling Irish had 5 turnovers and barely hung on to beat a lowly 3-8 BC team, with not one, but two, true freshmen quarterbacks. For its miscues (and silly all-green uniforms), ND has fallen out of the top four teams to make it into the national championship playoffs.
After how ND desecrated Fenway Park and its Green Monster, I'm also thankful for that bit of justice.
Right, Paully?
Mike
Tuesday, November 17, 2015
Go BC!
I am down to just two more days of eating without the PEG tube for my
14 consecutive day count. That will happen on this Thursday. I've
managed to keep my weight where it was when this started--the other key
part of this deal.
In some ways, this has seemed pretty easy. The days have gone by pretty fast, especially when I was four days in without really knowing it (see last post).
In other ways, this has been another struggle in Cancer World. Every bite of solid food has to be thought through, chewed (awkwardly) many times, and then carefully swallowed after several tries and a lot of water. All that, without any of the food dripping down my chin and onto my shirt. If I try to eat too much in one sitting, I get mentally fatigued from having to pay such close attention to something that 99.99% of people give no real thought to. That is now the price of living without the PEG tube. That, and a greatly reduced selection of food choices, probably for the rest of my life. If beer, wine and bourbon were solid foods, I'd be in a full blown funk right now.
Terry and I are going to Boston this weekend. The main purpose of the trip is to see the Boston College v. Notre Dame football game--at Fenway Park! Oddly enough, it's ND's home game--go figure how those little green arrogant bastards managed that. BC is having a terrible year, and ND has high hopes to make the national championship playoffs, which would make an upset even more sweet to see in person. ND has spit in BC's face by playing one of their 'home' games about 5 miles from the BC campus--and desecrating the Boston sports temple called Fenway Park. It just ain't right.
But, I digress, so let me say it straight and simple: Fuck the Fighting Irish.
Right, Paully?
Ok--tirade over. Back to Cancer World.
If all goes well, the PEG tube will come out before Christmas. That will be a huge step in the right direction. We meet with Dr. Roser next Tuesday, and hope to start a discussion about dental work to replace all of the teeth I've lost to ORN and surgeries. That will not be an easy or painless process, but it will indicate some significant progress towards making eating more enjoyable and efficient. I could really use that step forward.
mike
In some ways, this has seemed pretty easy. The days have gone by pretty fast, especially when I was four days in without really knowing it (see last post).
In other ways, this has been another struggle in Cancer World. Every bite of solid food has to be thought through, chewed (awkwardly) many times, and then carefully swallowed after several tries and a lot of water. All that, without any of the food dripping down my chin and onto my shirt. If I try to eat too much in one sitting, I get mentally fatigued from having to pay such close attention to something that 99.99% of people give no real thought to. That is now the price of living without the PEG tube. That, and a greatly reduced selection of food choices, probably for the rest of my life. If beer, wine and bourbon were solid foods, I'd be in a full blown funk right now.
Terry and I are going to Boston this weekend. The main purpose of the trip is to see the Boston College v. Notre Dame football game--at Fenway Park! Oddly enough, it's ND's home game--go figure how those little green arrogant bastards managed that. BC is having a terrible year, and ND has high hopes to make the national championship playoffs, which would make an upset even more sweet to see in person. ND has spit in BC's face by playing one of their 'home' games about 5 miles from the BC campus--and desecrating the Boston sports temple called Fenway Park. It just ain't right.
But, I digress, so let me say it straight and simple: Fuck the Fighting Irish.
Right, Paully?
Ok--tirade over. Back to Cancer World.
If all goes well, the PEG tube will come out before Christmas. That will be a huge step in the right direction. We meet with Dr. Roser next Tuesday, and hope to start a discussion about dental work to replace all of the teeth I've lost to ORN and surgeries. That will not be an easy or painless process, but it will indicate some significant progress towards making eating more enjoyable and efficient. I could really use that step forward.
mike
Wednesday, November 11, 2015
5 Days Tubeless, and Counting Up to 14
I was under the impression that I needed to get some official starting date for my attempt to stop using the PEG tube and that the PA would need to monitor my weight. Turns out it was a self-monitoring deal, which I learned after four days of not using the tube for any feeding. I still need to flush it with water every day, but that doesn't count against me.
So, yesterday was my fifth straight day of eating only orally. If I can keep that up, my 14th day will be November 19th. My weight has stayed steady for the last 5 days, but in order to do that I have to be very mindful of calories and be sure to eat every bite in front of me, even if it takes a long time.
If I can make it to the 14 straight days on Nov. 19th, I can then keep going through the Thanksgiving holiday and hope to have the tube removed in early December.
So, please send good vibes, and any calorie-dense foods you can deliver to me safely--I'll take care of the ice cream, quiche, pie, etc. on this end.
By the way, my Grateful Red Chili won 1st place last week in the Chomp & Stomp cookoff in ATL, with nearly 100 entries.
Life is Good!
Mike
So, yesterday was my fifth straight day of eating only orally. If I can keep that up, my 14th day will be November 19th. My weight has stayed steady for the last 5 days, but in order to do that I have to be very mindful of calories and be sure to eat every bite in front of me, even if it takes a long time.
If I can make it to the 14 straight days on Nov. 19th, I can then keep going through the Thanksgiving holiday and hope to have the tube removed in early December.
So, please send good vibes, and any calorie-dense foods you can deliver to me safely--I'll take care of the ice cream, quiche, pie, etc. on this end.
By the way, my Grateful Red Chili won 1st place last week in the Chomp & Stomp cookoff in ATL, with nearly 100 entries.
Life is Good!
Mike
Sunday, October 25, 2015
GCCB, sort of, and gearing up for the next test
At dinner tonight I took a step towards getting back to my culinary Nirvana--a green chili cheeseburger. I grilled GCCBs for Terry and myself and was able to eat about half of it, sans bun. I am pretty much resigned that I'll never be able to bite down on a burger and a bun at the same time, ever again--but I am still hopeful of being able to eat a GCCB patty by itself, after cutting it into very small pieces. I was able to do that tonight, but had to stop about half way because my jaw got tired from the chewing, and Terry wanted to do the dishes sometime before 10 o'clock--about when I would have finished it at the pace I was going.
But, it sure tasted good, even if it wasn't the full Monty of a GCCB.
The bigger news in all of that is I have not used my tube for feeding since breakfast on Friday--it's now Sunday night. I have to inject water into it every day to make sure it doesn't clog, but I've managed to eat almost 3 days of meals orally, and have expanded my food options quite a bit.
This is not the start of my official trial to eat 100% orally for 2 weeks, but it has given me confidence that I can have a go at it a lot sooner than I first thought. I will contact the doctor's office this week so try to get the OK for that to happen, and if given the green light, start my two weeks as soon as possible. I have a pretty good idea of what I can tolerate and what I need to avoid, and think I have plenty of healthy options that will let me meet my caloric and nutritional needs during that two weeks, and beyond. We are traveling the weekend before Thanksgiving and it would be great not to need any liquid chicken on that trip.
So, stay tuned, and I'll let you know when the 2-week clock starts and ask for your Good Vibes to help me through that next test.
Mike
But, it sure tasted good, even if it wasn't the full Monty of a GCCB.
The bigger news in all of that is I have not used my tube for feeding since breakfast on Friday--it's now Sunday night. I have to inject water into it every day to make sure it doesn't clog, but I've managed to eat almost 3 days of meals orally, and have expanded my food options quite a bit.
This is not the start of my official trial to eat 100% orally for 2 weeks, but it has given me confidence that I can have a go at it a lot sooner than I first thought. I will contact the doctor's office this week so try to get the OK for that to happen, and if given the green light, start my two weeks as soon as possible. I have a pretty good idea of what I can tolerate and what I need to avoid, and think I have plenty of healthy options that will let me meet my caloric and nutritional needs during that two weeks, and beyond. We are traveling the weekend before Thanksgiving and it would be great not to need any liquid chicken on that trip.
So, stay tuned, and I'll let you know when the 2-week clock starts and ask for your Good Vibes to help me through that next test.
Mike
Friday, October 16, 2015
1 Day Without Liquid Chicken
Without really planning to, I went the whole day yesterday with no liquid chicken. Terry made me pancakes for my Birthday Breakfast--lots of butter and lots of syrup, but if that's what it takes, I'll do it ;)
A fruit blend for lunch, and a yogurt snack when I got home. Then, for dinner the best thing I've eaten since June 18th--quiche with green chilis in it! I can't eat the crust yet and it's not a green chili cheeseburger by any stretch, but it was delicious in its own way.
Then, of course, the obligatory 2 glasses of wine while watching the Falcons get the crap beat out of them by the Saints.
(Funny story from the doctor's visit the other day. The intern examined my mouth and asked me what I had for breakfast that morning--grape juice? Gatorade? He said that my tongue was purple. I told him, Nope--red wine. He paused a bit and I then told him I had it the night before--not for breakfast. He laughed.) Hey, cancer survivor's humor...
This is not the start of my two weeks to get by without using the feeding tube, but it did show that I can shift more of my eating from the tube to oral feeding--and maybe faster than I thought.
Mike
A fruit blend for lunch, and a yogurt snack when I got home. Then, for dinner the best thing I've eaten since June 18th--quiche with green chilis in it! I can't eat the crust yet and it's not a green chili cheeseburger by any stretch, but it was delicious in its own way.
Then, of course, the obligatory 2 glasses of wine while watching the Falcons get the crap beat out of them by the Saints.
(Funny story from the doctor's visit the other day. The intern examined my mouth and asked me what I had for breakfast that morning--grape juice? Gatorade? He said that my tongue was purple. I told him, Nope--red wine. He paused a bit and I then told him I had it the night before--not for breakfast. He laughed.) Hey, cancer survivor's humor...
This is not the start of my two weeks to get by without using the feeding tube, but it did show that I can shift more of my eating from the tube to oral feeding--and maybe faster than I thought.
Mike
Wednesday, October 14, 2015
Passed with Flying Colors!
Meryl, the PA gave a big smile right after I took the first swallow of the test, and said--"no aspiration and good movement of the test liquid." That stayed the same for the rest of the short test, and the results were very encouraging, and more than a bit relieving after several weeks of lingering doubt.
So, I am safe to start eating more kinds of soft food--even foods that need a bit of chewing before they can be swallowed. My chewing is still limited, given that I have no teeth on the lower left side of my mouth, and it's difficult moving food around with my tongue--but if I can chew something well enough to get it into little pieces and wash it down with water, I am cleared to do that. Coming up next--scrambled eggs, syrup-soaked pancakes, tuna salad (hold the celery), fish, and pasta with lots of sauce on it. Who's better than me?
Meryl says that I can start to wean myself off the liquid chicken as long as I can maintain my caloric input to keep my current weight. I am a very long way from eating green chili cheeseburgers again, but that could happen down the road.
Next goal--getting rid of the stomach feeding tube. In order for that to happen, I need to not use it for two weeks straight, while not losing any weight. I am a very long way from that goal--maybe several months--but I am now cleared to start working on it.
As always, our thanks go out to Team Mike for the many Good Vibes and well wishes going into the test today. You came through again with the best birthday (tomorrow) present I could have asked for.
Mike
So, I am safe to start eating more kinds of soft food--even foods that need a bit of chewing before they can be swallowed. My chewing is still limited, given that I have no teeth on the lower left side of my mouth, and it's difficult moving food around with my tongue--but if I can chew something well enough to get it into little pieces and wash it down with water, I am cleared to do that. Coming up next--scrambled eggs, syrup-soaked pancakes, tuna salad (hold the celery), fish, and pasta with lots of sauce on it. Who's better than me?
Meryl says that I can start to wean myself off the liquid chicken as long as I can maintain my caloric input to keep my current weight. I am a very long way from eating green chili cheeseburgers again, but that could happen down the road.
Next goal--getting rid of the stomach feeding tube. In order for that to happen, I need to not use it for two weeks straight, while not losing any weight. I am a very long way from that goal--maybe several months--but I am now cleared to start working on it.
As always, our thanks go out to Team Mike for the many Good Vibes and well wishes going into the test today. You came through again with the best birthday (tomorrow) present I could have asked for.
Mike
Monday, October 12, 2015
A False Alarm and Cramming for my Swallow Test
About 6 weeks ago I felt a very tender spot in the right side of my mouth, and flicked out a tiny piece of dead bone. It was on the taurus--that bit of bone that protrudes out inside some people's mouth. I happen to have very prominent tauri. I thought nothing of it until a second spot occurred right after that, a bit bigger than the first. What crossed my mind then was that ORN was starting on the right side of my mouth.
We got a fast appointment with Dr. Roser, who examined the exposed bone and said that its location is not cause for concern. Apparently, the soft bone of the taurus makes it a likely candidate for exposed bone--yet another lingering after effect from the radiation treatments. It may look like ORN, but really isn't. So, we came away very relieved. But, with all we've been through, even a false alarm is not a good thing.
Next up--my swallow test on Wednesday. I've been doing my exercises and eating a bit more food orally to get extra work on my swallowing mechanisms. At one point I was not optimistic, but lately think that I'll do OK. No green chili cheeseburgers any time soon, but with all the food I've eaten orally lately--and no problems--I might be able to start shifting more of my eating away from liquid chicken.
Please send Good Vibes for Wednesday, and I'll post as soon as I can.
Mike
We got a fast appointment with Dr. Roser, who examined the exposed bone and said that its location is not cause for concern. Apparently, the soft bone of the taurus makes it a likely candidate for exposed bone--yet another lingering after effect from the radiation treatments. It may look like ORN, but really isn't. So, we came away very relieved. But, with all we've been through, even a false alarm is not a good thing.
Next up--my swallow test on Wednesday. I've been doing my exercises and eating a bit more food orally to get extra work on my swallowing mechanisms. At one point I was not optimistic, but lately think that I'll do OK. No green chili cheeseburgers any time soon, but with all the food I've eaten orally lately--and no problems--I might be able to start shifting more of my eating away from liquid chicken.
Please send Good Vibes for Wednesday, and I'll post as soon as I can.
Mike
Wednesday, September 30, 2015
Working the Plan
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
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
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
Friday, August 21, 2015
D+ on the Swallow Test
The results of yesterday's swallow test were about as I expected them to be. I am able to swallow a bit better than the last time, but am still having some fluid go down my windpipe and into my lungs. I have been given the OK to eat very soft foods like yogurt, pudding, ice cream, etc., and can drink more Boost during the day.
The Physician's Assistant who gave me the test was hesitant to give that OK, but said that I need to start using those muscles more for actually swallowing food, and not just with my exercises. She also saw some anatomical issues in my throat that are causing the reduced efficiency with my swallowing. She was going to show the test video to Dr. Wadsworth to get his opinion.
We celebrated this bit of progress by going out for dinner last night. I order the veggie soup--pureed, of course, and was able to eat a little of it. The bigger challenge was not the thickness of the soup--it was the spiceyness of it--or at least what I thought was spicey. When Terry tasted it, she said it was a bit peppery, but not at all spicey to her. So, not only does my food need to be very soft, it needs to be very bland, for now.
At home after dinner I had a little bit of plain vanilla ice cream, which I enjoyed a lot--both for the taste and the coolness on my throat. Rocky Road and Chery Garcia flavors are off-limits for sure.
So, I passed the test enough to be cleared for a bit of progress, but am a long way from being able to sustain myself with oral feedings. But, it's a start, and that's all I can ask for today.
Mike
The Physician's Assistant who gave me the test was hesitant to give that OK, but said that I need to start using those muscles more for actually swallowing food, and not just with my exercises. She also saw some anatomical issues in my throat that are causing the reduced efficiency with my swallowing. She was going to show the test video to Dr. Wadsworth to get his opinion.
We celebrated this bit of progress by going out for dinner last night. I order the veggie soup--pureed, of course, and was able to eat a little of it. The bigger challenge was not the thickness of the soup--it was the spiceyness of it--or at least what I thought was spicey. When Terry tasted it, she said it was a bit peppery, but not at all spicey to her. So, not only does my food need to be very soft, it needs to be very bland, for now.
At home after dinner I had a little bit of plain vanilla ice cream, which I enjoyed a lot--both for the taste and the coolness on my throat. Rocky Road and Chery Garcia flavors are off-limits for sure.
So, I passed the test enough to be cleared for a bit of progress, but am a long way from being able to sustain myself with oral feedings. But, it's a start, and that's all I can ask for today.
Mike
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