A Home Run! -
Today, on this national day of Thanksgiving, I have a lot to be thankful for. We heard from the Huntsman Cancer Center yesterday afternoon and they are saying we hit a home run! YES!!! We still have a formal meeting with the doctor to go over the scan results, but we were told they were very good. Apparently there are a couple of spots they want to watch, but nothing that requires anything more than watching.
The family has gathered for Thanksgiving and it's wonderful to have so many with which to share this great news. Today we give thanks to the skilled doctors and nurses that worked on us, thanks to the caring family and friends that stood by us, thanks for all the prayers given up on our behalf, and thanks to God for by the grace of God we've come though this.
So, as you gather around your Thanksgiving table today, where ever that may be, offer a prayer of thanksgiving for answered prayers. Your prayers have been powerful, and today will indeed be a very special Thanksgiving Day at the Harris household.
THANK YOU - THANK YOU - THANK YOU
Thursday, November 26, 2009
Monday, November 23, 2009
Attitude -
I'm sitting here thinking about tomorrow and my PET scan. It's like taking a test you can't prepare for or study for, but want desperately to pass. Tests have never bothered me, but this one seems completely out of my control. All I have to bring to the examination table is my attitude.
From the beginning of this journey, everyone has emphasized the importance of attitude. I must admit, it's taken me some time to fully understand this. It was as if attitude was THE way to win and if you didn't win it would mean you had a poor attitude. Well, cancer isn't something you can just wish away. So that's not it. I've come to understand it's your attitude about the fight, not the disease.
Attitude is how you approach the cancer challenge, and it comes into play early. The very first doctor I saw queried me about my mental toughness. I kind of got in his face and told him he didn't need to worry about my resolve or attitude. To some extent, every doctor we met made a similar assessment.
Now, I have no proof, but I have a theory on how this all works. I think your prescribed treatment regiment is really the result of three factors. First, they determine what kind of cancer cell you have, the location of the tumor, and how far it may have spread.....the stage. Second, they assess your physical condition and determine just how much your body will tolerate. I think this second part is fairly easy to determine. You can tell them you're in great shape, workout five times a week and eat right, but it won't take but a few tests for the doctor to make a fairly accurate assessment. Third, they assess your attitude; where your head is. This is more subjective and I think what you say here is extremely important as they decide just how much you can take. My theory is they start with a fairly standard treatment prescription based on the cancer diagnosis and then modify it depending on factors two and three.
In my case, I think I talked myself into a harder or rougher treatment. I recall weighing treatment options with every doctor I met......surgery options, chemo options, radiation options. Every time I thought their treatment was leaning conservative I challenged them. I told every doctor, at least once, "I don't want a swing and a miss." Probably a dumb way to put it, but I didn't have a better way to convey where my head was.
Now, that was a good start. But as my treatment progressed, I really learned to understand this attitude thing. The attitude everyone talks about is the attitude about the treatments. After four chemo sessions, you know what's coming with number five. You know how you're going to feel. You know the routine. Can you walk back in again and again knowing what's in store? Radiation is cumulative......burn on burn. Toward the end, it's attitude that gets you back under that zapper day after day.
I said earlier I thought I talked myself into a rougher treatment. The doctors never said much out of the ordinary. They led me to think the treatment WAS ordinary. But I got a different read from the lab technicians. These were the people that saw me everyday. You get so you develop an awkward relationship with these white coats. In the last week of radiation, I could see and feel their concern. "How are you doing, Al", and it wasn't small talk. "Al, you're doing go0d....are you okay?" And at one time, "We know this is hard; it's as tough as we give anyone." Were they just words of encouragement? I don't think so. I saw the concern in their eyes and heard the compassion in their voices.
So, that's my take on attitude. I think it plays a huge role and I think it's a factor early in the process, before most patients even know it's a factor. It's being seriously assessed from the beginning and helps define your treatment. And I believe it's the attitude about the treatment....not the disease.....that's imperative.
So, we swing for the bleachers and tomorrow we hear whether it was a home run or a foul ball. The test is tomorrow.........but it'll be another week before we get the call.
Next......the alone part of the journey.
I'm sitting here thinking about tomorrow and my PET scan. It's like taking a test you can't prepare for or study for, but want desperately to pass. Tests have never bothered me, but this one seems completely out of my control. All I have to bring to the examination table is my attitude.
From the beginning of this journey, everyone has emphasized the importance of attitude. I must admit, it's taken me some time to fully understand this. It was as if attitude was THE way to win and if you didn't win it would mean you had a poor attitude. Well, cancer isn't something you can just wish away. So that's not it. I've come to understand it's your attitude about the fight, not the disease.
Attitude is how you approach the cancer challenge, and it comes into play early. The very first doctor I saw queried me about my mental toughness. I kind of got in his face and told him he didn't need to worry about my resolve or attitude. To some extent, every doctor we met made a similar assessment.
Now, I have no proof, but I have a theory on how this all works. I think your prescribed treatment regiment is really the result of three factors. First, they determine what kind of cancer cell you have, the location of the tumor, and how far it may have spread.....the stage. Second, they assess your physical condition and determine just how much your body will tolerate. I think this second part is fairly easy to determine. You can tell them you're in great shape, workout five times a week and eat right, but it won't take but a few tests for the doctor to make a fairly accurate assessment. Third, they assess your attitude; where your head is. This is more subjective and I think what you say here is extremely important as they decide just how much you can take. My theory is they start with a fairly standard treatment prescription based on the cancer diagnosis and then modify it depending on factors two and three.
In my case, I think I talked myself into a harder or rougher treatment. I recall weighing treatment options with every doctor I met......surgery options, chemo options, radiation options. Every time I thought their treatment was leaning conservative I challenged them. I told every doctor, at least once, "I don't want a swing and a miss." Probably a dumb way to put it, but I didn't have a better way to convey where my head was.
Now, that was a good start. But as my treatment progressed, I really learned to understand this attitude thing. The attitude everyone talks about is the attitude about the treatments. After four chemo sessions, you know what's coming with number five. You know how you're going to feel. You know the routine. Can you walk back in again and again knowing what's in store? Radiation is cumulative......burn on burn. Toward the end, it's attitude that gets you back under that zapper day after day.
I said earlier I thought I talked myself into a rougher treatment. The doctors never said much out of the ordinary. They led me to think the treatment WAS ordinary. But I got a different read from the lab technicians. These were the people that saw me everyday. You get so you develop an awkward relationship with these white coats. In the last week of radiation, I could see and feel their concern. "How are you doing, Al", and it wasn't small talk. "Al, you're doing go0d....are you okay?" And at one time, "We know this is hard; it's as tough as we give anyone." Were they just words of encouragement? I don't think so. I saw the concern in their eyes and heard the compassion in their voices.
So, that's my take on attitude. I think it plays a huge role and I think it's a factor early in the process, before most patients even know it's a factor. It's being seriously assessed from the beginning and helps define your treatment. And I believe it's the attitude about the treatment....not the disease.....that's imperative.
So, we swing for the bleachers and tomorrow we hear whether it was a home run or a foul ball. The test is tomorrow.........but it'll be another week before we get the call.
Next......the alone part of the journey.
Monday, November 16, 2009
Back to Work -
WOW! It's been a long time since I posted an entry. I would like to say time flies, but that's not the case. Improvement has been slow......but we're still improving. Not so much day to day, but more like week to week. We are eating more, even though we're not enjoying it much. We have started a strength and weight gaining program, but that too looks to be slow.
Today, however, was a big day. I went back to work full time. That means going back on the air this morning at 6 AM. I told Faith last night that I probably could have gone back a couple of weeks ago. Tonight, I'm not so sure. My voice showed the strain by the time I finished the show and it's been a long day, but boy was it good to be back. It's been five months and I was a bit rusty. (I thought originally that I'd be back in three months. Right!) Had to struggle to remember everything that needed to be done and then remember how to do it. But this community is so understanding and supportive, and we heard from many well-wishers.
Faith and I continue to marvel at the fantstic staff that covered all the bases since last June. It's another of the many blessing we have received and for which we will give much thanks next week when we all gather for our national day of Thanksgiving.
Speaking of next week, my PET Scan is scheduled for a week from today. Everything points to a high probability of getting a clean report. I feel good, and good about the scan, but I'm nervous. I don't know how you help but be a little anxious. I look forward to finally getting some results, but I want a good report Hope that's not asking too much. (I welcome your thoughts and prayers.)
One of my goals from the start was to be able to emcee the "Cowboys Against Cancer" (CAC) fundraising banquet. It was a week ago, (Nov. 7) and we met our goal. It was truly a phenominal evening. The CAC Committee is a remarkable bunch of dedicated volunteers. They set the table and we showed up for a sensastional ride. It was a record-setting attendance of 860 with an unmatched level of generosity. This giving community blew away all previous banquets by raising $325,000! It was an emotional and moving night with many people sharing and shedding many tears. Faith and I will always remember this banquet. It was a long night, but the adrenalin kept us going and in the end it was a happy tired feeling.
The next day we went to Sheridan to visit my folks......perfect timing for a great, recharging visit.
Still coming........the meaning of attitude....or......going it alone.
WOW! It's been a long time since I posted an entry. I would like to say time flies, but that's not the case. Improvement has been slow......but we're still improving. Not so much day to day, but more like week to week. We are eating more, even though we're not enjoying it much. We have started a strength and weight gaining program, but that too looks to be slow.
Today, however, was a big day. I went back to work full time. That means going back on the air this morning at 6 AM. I told Faith last night that I probably could have gone back a couple of weeks ago. Tonight, I'm not so sure. My voice showed the strain by the time I finished the show and it's been a long day, but boy was it good to be back. It's been five months and I was a bit rusty. (I thought originally that I'd be back in three months. Right!) Had to struggle to remember everything that needed to be done and then remember how to do it. But this community is so understanding and supportive, and we heard from many well-wishers.
Faith and I continue to marvel at the fantstic staff that covered all the bases since last June. It's another of the many blessing we have received and for which we will give much thanks next week when we all gather for our national day of Thanksgiving.
Speaking of next week, my PET Scan is scheduled for a week from today. Everything points to a high probability of getting a clean report. I feel good, and good about the scan, but I'm nervous. I don't know how you help but be a little anxious. I look forward to finally getting some results, but I want a good report Hope that's not asking too much. (I welcome your thoughts and prayers.)
One of my goals from the start was to be able to emcee the "Cowboys Against Cancer" (CAC) fundraising banquet. It was a week ago, (Nov. 7) and we met our goal. It was truly a phenominal evening. The CAC Committee is a remarkable bunch of dedicated volunteers. They set the table and we showed up for a sensastional ride. It was a record-setting attendance of 860 with an unmatched level of generosity. This giving community blew away all previous banquets by raising $325,000! It was an emotional and moving night with many people sharing and shedding many tears. Faith and I will always remember this banquet. It was a long night, but the adrenalin kept us going and in the end it was a happy tired feeling.
The next day we went to Sheridan to visit my folks......perfect timing for a great, recharging visit.
Still coming........the meaning of attitude....or......going it alone.
Thursday, October 22, 2009
For Better and Worse -
People ask me how I'm feeling and I tell them I'm feeling better, that I'm getting stronger. And I do feel better. But the better I get, the more I realize how sick I was.
Part of it goes back to the discussion I had about what it means when someone says "you look good". My initial thoughts on the subject were correct. It IS a RELATIVE term. It means you look better than someone expected or better than the last time they saw you. It has nothing to do with how you really look. The reality is I looked like.....well.....I didn't look very good, because I wasn't very good. The better I get, the more people share with me how I really looked.
But it was confusing because I didn't see how I looked. I didn't see me as sick. I also didn't think I was as sick as they say I looked. I think it's part of God's way to protect us at times like this. The body has built in mechanisms that protect us from bad things. I saw it as a first responder to bad highway accidents and now I think I have experienced some of it. The better I get, the more I realize how sick I was.
Another part of it is the healing time. It's been nearly eight weeks since my last treatment and I'm still not back to being myself. I've never taken eight days, let alone eight weeks, to heal. Broken bones heal faster than this! I went through an explosion of the radio station in Laramie that totaled the building and two cars and spent less than two weeks in the hospital! The better I get, the more I realize how sick I was.
The third poignant example came yesterday. I went back to the gym for the first time since this ordeal started. Now anyone who knows me, knows I like to run. I don't know if I run because I like it, or if I like running because I can. I have the heart of a runner.....a very slow heartbeat. I don't run fast, I just run forever. I ran three 5K's in the two weeks before my first surgery. Yesterday I couldn't run for more than two minutes! In the weight room it was the same story. I knew I needed to drop weight and I did by twenty-five percent. It wasn't enough. I had to cut the amount of weight I had been using by HALF. And it was still a struggle. The better I get, well enough to go back to the gym, the more I realize just how sick I really was.
It's another in a growing list of experiences I have never had before. This has been quite the journey. I am better, much better. And I keep being told I'm ahead of the curve and that's the direct result of all of your support. I have a ways to go, but we're tracking the right direction.
Next.......understanding attitude, or calling your own shots. No, they're not connected. I just don't know which one will come together first.
People ask me how I'm feeling and I tell them I'm feeling better, that I'm getting stronger. And I do feel better. But the better I get, the more I realize how sick I was.
Part of it goes back to the discussion I had about what it means when someone says "you look good". My initial thoughts on the subject were correct. It IS a RELATIVE term. It means you look better than someone expected or better than the last time they saw you. It has nothing to do with how you really look. The reality is I looked like.....well.....I didn't look very good, because I wasn't very good. The better I get, the more people share with me how I really looked.
But it was confusing because I didn't see how I looked. I didn't see me as sick. I also didn't think I was as sick as they say I looked. I think it's part of God's way to protect us at times like this. The body has built in mechanisms that protect us from bad things. I saw it as a first responder to bad highway accidents and now I think I have experienced some of it. The better I get, the more I realize how sick I was.
Another part of it is the healing time. It's been nearly eight weeks since my last treatment and I'm still not back to being myself. I've never taken eight days, let alone eight weeks, to heal. Broken bones heal faster than this! I went through an explosion of the radio station in Laramie that totaled the building and two cars and spent less than two weeks in the hospital! The better I get, the more I realize how sick I was.
The third poignant example came yesterday. I went back to the gym for the first time since this ordeal started. Now anyone who knows me, knows I like to run. I don't know if I run because I like it, or if I like running because I can. I have the heart of a runner.....a very slow heartbeat. I don't run fast, I just run forever. I ran three 5K's in the two weeks before my first surgery. Yesterday I couldn't run for more than two minutes! In the weight room it was the same story. I knew I needed to drop weight and I did by twenty-five percent. It wasn't enough. I had to cut the amount of weight I had been using by HALF. And it was still a struggle. The better I get, well enough to go back to the gym, the more I realize just how sick I really was.
It's another in a growing list of experiences I have never had before. This has been quite the journey. I am better, much better. And I keep being told I'm ahead of the curve and that's the direct result of all of your support. I have a ways to go, but we're tracking the right direction.
Next.......understanding attitude, or calling your own shots. No, they're not connected. I just don't know which one will come together first.
Tuesday, October 20, 2009
The Tube is Gone -
I got my feeding tube removed yesterday.....a sure sign of improvement. It was a simple, painless procedure. And that's the good news.
What was not good was the rigor and anxiety they needlessly put me through. So this is for anyone whoever has a 'g' tube, or knows someone who does.
I made the appointment a week in advance and the earliest time I could get was noon at the hospital in Salt Lake City....something about the necessary personnel were not available before then. I inquired about the nature of this procedure and was told it would take about forty minutes. I was told I'd be given something that would block the pain and prevent me from remembering anything. I was instructed to fast for eight hours before the procedure and take in no fluids for four hours prior.
By the time I arrived at the hospital I was totally focused on the upcoming surgical prep, actual procedure, and recovery. I would like to tell you this stuff doesn't bother me, but it does. I don't think I'm overanxious, but I conscientiously work on anxiety control.
Upon arrival I was told to don a hospital gown, pajama bottoms, a robe and booties. I then waited another thirty minutes before being called back to a room where I expected to be prepped, including an IV.
The next sixty seconds were shocking. Someone, could have been a doctor, nurse, or aide, came in, asked me to stand up and show her my tube. With a pair of scissors she cut the tube (which I later learned also severed an internal string that was connected to something in my stomach that kept the tube in place) and pulled it out, like pulling a noodle out of a pile of spaghetti. She put a small gauze bandage on the hole (no stitches) and sent me on my way!
That was it! It took you longer to read about it. I could have done it myself at home. The doctor, nurse, or whoever did it, agreed. I asked about the fasting and the hospital gown and was told it was all just procedure. Not a problem, except four hours without water is troublesome for someone who can't produce saliva. Not a problem, except it was a day in Salt Lake I didn't need. No problem, except I spent a week thinking about another surgery.
Now this part is NOT a problem.....it was quick and painless. And just like that I'm no longer a pull toy....my string (tube) is gone!
I got my feeding tube removed yesterday.....a sure sign of improvement. It was a simple, painless procedure. And that's the good news.
What was not good was the rigor and anxiety they needlessly put me through. So this is for anyone whoever has a 'g' tube, or knows someone who does.
I made the appointment a week in advance and the earliest time I could get was noon at the hospital in Salt Lake City....something about the necessary personnel were not available before then. I inquired about the nature of this procedure and was told it would take about forty minutes. I was told I'd be given something that would block the pain and prevent me from remembering anything. I was instructed to fast for eight hours before the procedure and take in no fluids for four hours prior.
By the time I arrived at the hospital I was totally focused on the upcoming surgical prep, actual procedure, and recovery. I would like to tell you this stuff doesn't bother me, but it does. I don't think I'm overanxious, but I conscientiously work on anxiety control.
Upon arrival I was told to don a hospital gown, pajama bottoms, a robe and booties. I then waited another thirty minutes before being called back to a room where I expected to be prepped, including an IV.
The next sixty seconds were shocking. Someone, could have been a doctor, nurse, or aide, came in, asked me to stand up and show her my tube. With a pair of scissors she cut the tube (which I later learned also severed an internal string that was connected to something in my stomach that kept the tube in place) and pulled it out, like pulling a noodle out of a pile of spaghetti. She put a small gauze bandage on the hole (no stitches) and sent me on my way!
That was it! It took you longer to read about it. I could have done it myself at home. The doctor, nurse, or whoever did it, agreed. I asked about the fasting and the hospital gown and was told it was all just procedure. Not a problem, except four hours without water is troublesome for someone who can't produce saliva. Not a problem, except it was a day in Salt Lake I didn't need. No problem, except I spent a week thinking about another surgery.
Now this part is NOT a problem.....it was quick and painless. And just like that I'm no longer a pull toy....my string (tube) is gone!
Monday, October 12, 2009
Reflections -
I've decided to share some reflections on the journey of the past few months. Originally, I thought this would speak mostly to other cancer patients, because it was something I discovered being a patient and wanted to tell others. But as this entry developed, I sensed it might resonate with others. Maybe, somewhere, it will have meaning for you.
From the beginning, June 10, 2009, I focused on me. I don't think that was selfish, but instead a requisite. I concentrated on a plan of attack, the preparation for battle, getting my head in the right place, and the logistics of a lengthy campaign. I know the diagnosis had a significant impact on me, but it took time and concentration to know the extent of the impact and which reactions were real and which were imaginary. (I'm still sorting through that today.)
Now, I don't think I'm an insentsitive guy, though others may have something to offer to the contrary. I may not see Faith's hair the moment she walks in from the salon, but I'll usually notice before the day is out. Hey, in a guy's world, that's sensitive!
Yet in the midst of this battle, I missed several things. I knew this cancer thing had hit Faith hard, even though she has rarely shown it. What I didn't see is how it impacted the other people around me.......family, co-workers, close friends. And I didn't see it until just recently. Oh, I had tremendous support from all sectors, but I was blind to see how these people were really affected. And not as an excuse, but to some extent I think these caring people shielded me, thinking I had enough on my plate.
Regardless, I now know this cancer and the past few months have hit close to home and deeply touched more than just Faith and me. My parents, Faith's parents, my kids, my brothers, their kids, close friends and all the others. I see now these people have had their lives touched, and in some cases, profoundly so.
I can't apologize for taking you through this, because believe me, it wasn't my idea or my decision to be on this journey. But I am sorry for not seeing what you were going through. Just as you have supported me, this is my way of supporting you. We'll be okay....and stronger for what we've experienced. I call it the blessings of cancer. Yes, there are some, as strange as that sounds, and I pray you have been blessed through this ordeal as we have.
To come full circle, I want other cancer patients to know you're not going through this alone. I know there are times it feels like a solo ride, but I now know there are others around us taking this very ride with us. The better I get, the more I see; the more I see, the more I'm touched.
God bless all of you.
I've decided to share some reflections on the journey of the past few months. Originally, I thought this would speak mostly to other cancer patients, because it was something I discovered being a patient and wanted to tell others. But as this entry developed, I sensed it might resonate with others. Maybe, somewhere, it will have meaning for you.
From the beginning, June 10, 2009, I focused on me. I don't think that was selfish, but instead a requisite. I concentrated on a plan of attack, the preparation for battle, getting my head in the right place, and the logistics of a lengthy campaign. I know the diagnosis had a significant impact on me, but it took time and concentration to know the extent of the impact and which reactions were real and which were imaginary. (I'm still sorting through that today.)
Now, I don't think I'm an insentsitive guy, though others may have something to offer to the contrary. I may not see Faith's hair the moment she walks in from the salon, but I'll usually notice before the day is out. Hey, in a guy's world, that's sensitive!
Yet in the midst of this battle, I missed several things. I knew this cancer thing had hit Faith hard, even though she has rarely shown it. What I didn't see is how it impacted the other people around me.......family, co-workers, close friends. And I didn't see it until just recently. Oh, I had tremendous support from all sectors, but I was blind to see how these people were really affected. And not as an excuse, but to some extent I think these caring people shielded me, thinking I had enough on my plate.
Regardless, I now know this cancer and the past few months have hit close to home and deeply touched more than just Faith and me. My parents, Faith's parents, my kids, my brothers, their kids, close friends and all the others. I see now these people have had their lives touched, and in some cases, profoundly so.
I can't apologize for taking you through this, because believe me, it wasn't my idea or my decision to be on this journey. But I am sorry for not seeing what you were going through. Just as you have supported me, this is my way of supporting you. We'll be okay....and stronger for what we've experienced. I call it the blessings of cancer. Yes, there are some, as strange as that sounds, and I pray you have been blessed through this ordeal as we have.
To come full circle, I want other cancer patients to know you're not going through this alone. I know there are times it feels like a solo ride, but I now know there are others around us taking this very ride with us. The better I get, the more I see; the more I see, the more I'm touched.
God bless all of you.
Tuesday, September 29, 2009
Real Food -
Yeah! Hurray! We did it!
I'm talking about eating real food.....an entire meal. Now it doesn't sound like much, unless the last time you ate a complete meal was last July. In my head, this was the marker that would indicate I was really on the mend.
It actually happened last Friday at lunch. Faith said let's get something to eat. All the way to the restaurant I'm thinking what can I order.....it's too late for breakfast so oatmeal is out. So I had a hot turkey sandwich with mashed potatoes and gravy and corn. And I ate most of it! Now it didn't taste right, but it wasn't bad. I thought it was unusual to have beef gravy on turkey, but with my taste buds, it didn't matter.
I was nervous that this might be a fluke so we tried it again on Saturday. I got away with ham and eggs and hash browns. I've eaten two meals a day ever since. We are on our way. Just don't pass the desert. I don't taste sugar and most sweets that don't taste sweet don't taste very good.
We saw the doctor on Monday. Overall it was a very positive day. Specifically, there's no surgery on the table and we've moved to a long range appointment schedule to monitor our progress. The doctor says he relies on what he can see and feel and he liked what he saw and felt. The radiation doctor likes PET scans. So, between the two, we think we have good sentries at the gate.
This doctor says the healing starts now. I told him it's been slow and God didn't give me a lot of patience. He said he didn't have a lot of patience either....except for people like me. Imagine that. An oncologist with a sense of humor.
He also said the healing was a really a process. I think that's a fancy medical term for slow. I've learned that this healing process is not on a continuum. It's been more like two steps forward and one step back, something I found frustrating until I learned to expect it.
We won't see this doctor again until after the PET scan. And we know the cancer treatments are over until then. In addition to the scans, we also will get chest xrays and some kind of thyroid test on a regular basis. This is all good news.
Thank you all for your support and prayers. The power of prayer is stupendous.
Yeah! Hurray! We did it!
I'm talking about eating real food.....an entire meal. Now it doesn't sound like much, unless the last time you ate a complete meal was last July. In my head, this was the marker that would indicate I was really on the mend.
It actually happened last Friday at lunch. Faith said let's get something to eat. All the way to the restaurant I'm thinking what can I order.....it's too late for breakfast so oatmeal is out. So I had a hot turkey sandwich with mashed potatoes and gravy and corn. And I ate most of it! Now it didn't taste right, but it wasn't bad. I thought it was unusual to have beef gravy on turkey, but with my taste buds, it didn't matter.
I was nervous that this might be a fluke so we tried it again on Saturday. I got away with ham and eggs and hash browns. I've eaten two meals a day ever since. We are on our way. Just don't pass the desert. I don't taste sugar and most sweets that don't taste sweet don't taste very good.
We saw the doctor on Monday. Overall it was a very positive day. Specifically, there's no surgery on the table and we've moved to a long range appointment schedule to monitor our progress. The doctor says he relies on what he can see and feel and he liked what he saw and felt. The radiation doctor likes PET scans. So, between the two, we think we have good sentries at the gate.
This doctor says the healing starts now. I told him it's been slow and God didn't give me a lot of patience. He said he didn't have a lot of patience either....except for people like me. Imagine that. An oncologist with a sense of humor.
He also said the healing was a really a process. I think that's a fancy medical term for slow. I've learned that this healing process is not on a continuum. It's been more like two steps forward and one step back, something I found frustrating until I learned to expect it.
We won't see this doctor again until after the PET scan. And we know the cancer treatments are over until then. In addition to the scans, we also will get chest xrays and some kind of thyroid test on a regular basis. This is all good news.
Thank you all for your support and prayers. The power of prayer is stupendous.
Sunday, September 20, 2009
The Cure -
I know it's been some time since I made an entry, but I just haven't had much new to add. There has been speculation that it's because I haven't been feeling well, but that's not the case. I'm continuing to heal and feel better.
On a day-to-day basis I really sense no improvement, but if I think back to a week ago, I see definite progress. I'm nibbling at more food and not tiring as quickly. I've been into the radio station several times and even spent some most enjoyable time digging dandelions out of the station lawn. (It's amazing what activities can bring joy these days!)
We see the surgery oncologist a week from tomorrow. He's the one that removed the initial tumor. Hopefully, we'll learn if neck surgery is in our future. The lump has all but disappeared, so I'm hopeful the knife won't be necessary again.
I've had some time to reflect these past ten days, and would like to share some of those thoughts.
The treatment for cancer is nothing but barbaric! Simply put, they cut you, burn you, or pump poison into you until your body can't take any more. Then they send you home to recover.
We look back on the medical practices of a hundred years ago and see crude remedies and wonder "How could they do that do that to other human beings?" I hope in a hundred years, or even fifty years, society says the same about what we are doing today.
I hope, but I'm not confident. From what I see, cancer treatment hasn't changed in forty years. Despite all the money and research.....the treatment is the same cutting , burning and poisoning of forty years ago. I say this because my Dad went through this forty years ago and I thank God he and Mom are still with me today to share their journey and offer their support. I appreciate that the treatment is administered better and more efficiently, and hopefully with much less discomfort, but it's still the same basic remedy.
I'm not offering any conclusions or criticisms, just some observations. I do pray the days of barbaric therapy for cancer are numbered.....and my heart goes out to those who have had it much worse than me and to those yet to come down this cursed path.
I know it's been some time since I made an entry, but I just haven't had much new to add. There has been speculation that it's because I haven't been feeling well, but that's not the case. I'm continuing to heal and feel better.
On a day-to-day basis I really sense no improvement, but if I think back to a week ago, I see definite progress. I'm nibbling at more food and not tiring as quickly. I've been into the radio station several times and even spent some most enjoyable time digging dandelions out of the station lawn. (It's amazing what activities can bring joy these days!)
We see the surgery oncologist a week from tomorrow. He's the one that removed the initial tumor. Hopefully, we'll learn if neck surgery is in our future. The lump has all but disappeared, so I'm hopeful the knife won't be necessary again.
I've had some time to reflect these past ten days, and would like to share some of those thoughts.
The treatment for cancer is nothing but barbaric! Simply put, they cut you, burn you, or pump poison into you until your body can't take any more. Then they send you home to recover.
We look back on the medical practices of a hundred years ago and see crude remedies and wonder "How could they do that do that to other human beings?" I hope in a hundred years, or even fifty years, society says the same about what we are doing today.
I hope, but I'm not confident. From what I see, cancer treatment hasn't changed in forty years. Despite all the money and research.....the treatment is the same cutting , burning and poisoning of forty years ago. I say this because my Dad went through this forty years ago and I thank God he and Mom are still with me today to share their journey and offer their support. I appreciate that the treatment is administered better and more efficiently, and hopefully with much less discomfort, but it's still the same basic remedy.
I'm not offering any conclusions or criticisms, just some observations. I do pray the days of barbaric therapy for cancer are numbered.....and my heart goes out to those who have had it much worse than me and to those yet to come down this cursed path.
Thursday, September 10, 2009
Finding out When? -
We met with the radiation doctor yesterday, and even though it was close to "You're looking good, make another appointment", we did learn a few things.
She said I'm right on track for how I'm healing and feeling, and that the terrible taste of food is pretty normal. She also said it takes about a month after the last radiation treatment to heal. I guess that means a couple more weeks of liquid dining. The doctor also said I was healthy, but I sure don't feel healthy. She also accused me of having an attitude. Who? Me? Faith thought it was funny. I'm not sure what I thought.
We did find out that we won't find out until the end of November if this chemo and radiation worked. That's when they do another PET scan to see if the cancer is gone.
Back in the car, I grumbled about not knowing anything till after Thanksgiving. Faith said, "Don't worry about it." I said, "What!?!?" She said, "Give it to God." She was right again.
It's out of my control, so what is there to worry about? I need to channel my energy into things I can do and areas where I can be productive.
Whoa! I think I just gave myself a little pep talk. I guess I needed one.
We met with the radiation doctor yesterday, and even though it was close to "You're looking good, make another appointment", we did learn a few things.
She said I'm right on track for how I'm healing and feeling, and that the terrible taste of food is pretty normal. She also said it takes about a month after the last radiation treatment to heal. I guess that means a couple more weeks of liquid dining. The doctor also said I was healthy, but I sure don't feel healthy. She also accused me of having an attitude. Who? Me? Faith thought it was funny. I'm not sure what I thought.
We did find out that we won't find out until the end of November if this chemo and radiation worked. That's when they do another PET scan to see if the cancer is gone.
Back in the car, I grumbled about not knowing anything till after Thanksgiving. Faith said, "Don't worry about it." I said, "What!?!?" She said, "Give it to God." She was right again.
It's out of my control, so what is there to worry about? I need to channel my energy into things I can do and areas where I can be productive.
Whoa! I think I just gave myself a little pep talk. I guess I needed one.
Sunday, September 6, 2009
Healing Slowly -
I'm getting better, I know I am, but on a day-to-day basis the change is imperceptible. I'd say it's like watching paint dry, except it's worse.
Everyone says I look good. In fact I've heard it so many times, I'm starting to believe it. Now, I just need to know what they mean. Do they mean I really look good? Or is it akin to telling your ninety year old grandmother she looks good....when you really mean she looks good for ninety. Or maybe it means I look better than they expected. Or maybe it's, you look really good for having cancer and chemo and radiation. The bottom line is the qualifier.......you look good compared to what? Since I don't know, I've decided it means I look good......compared to George Clooney. And thanks! I feel better already.
I do feel better. If I think back to Tuesday, speaking still required tremendous effort. I won't say it's effortless now, but it's not difficult. It's been nice to have an evening conversation with Faith and not struggle.
I made a trip to Pinedale on Thursday in connection with work. Shane did the driving or I wouldn't have gone, but it was still a long day.
Yesterday, I helped Chad a little with his deck rebuilding project....key words are "a little". Still, a couple of hours and I was wiped out. Not happy about that, but Faith finds ways to spin it to the positive and make it seem encouraging.
I continue to experiment with different food. It all tastes the same......and that's not good........so I'm basically eating nothing. Getting the morsels to my stomach is not a problem, it's getting them by the gateway. My taste buds are not cooperating.
It's been two weeks now since the last treatment. I know that's not long, but there are times when it feels endless. We see the doctor again on Wednesday and are hopeful it'll be more than "you look good....see me again in two weeks". Hopefully we'll find out when we can learn some results and plan a blue band burning bonfire.
I'm getting better, I know I am, but on a day-to-day basis the change is imperceptible. I'd say it's like watching paint dry, except it's worse.
Everyone says I look good. In fact I've heard it so many times, I'm starting to believe it. Now, I just need to know what they mean. Do they mean I really look good? Or is it akin to telling your ninety year old grandmother she looks good....when you really mean she looks good for ninety. Or maybe it means I look better than they expected. Or maybe it's, you look really good for having cancer and chemo and radiation. The bottom line is the qualifier.......you look good compared to what? Since I don't know, I've decided it means I look good......compared to George Clooney. And thanks! I feel better already.
I do feel better. If I think back to Tuesday, speaking still required tremendous effort. I won't say it's effortless now, but it's not difficult. It's been nice to have an evening conversation with Faith and not struggle.
I made a trip to Pinedale on Thursday in connection with work. Shane did the driving or I wouldn't have gone, but it was still a long day.
Yesterday, I helped Chad a little with his deck rebuilding project....key words are "a little". Still, a couple of hours and I was wiped out. Not happy about that, but Faith finds ways to spin it to the positive and make it seem encouraging.
I continue to experiment with different food. It all tastes the same......and that's not good........so I'm basically eating nothing. Getting the morsels to my stomach is not a problem, it's getting them by the gateway. My taste buds are not cooperating.
It's been two weeks now since the last treatment. I know that's not long, but there are times when it feels endless. We see the doctor again on Wednesday and are hopeful it'll be more than "you look good....see me again in two weeks". Hopefully we'll find out when we can learn some results and plan a blue band burning bonfire.
Monday, August 31, 2009
Turning a Small Corner -
Last week was the toughest week we've had so far. Faith would wholeheartedly agree. By Friday night she was online trying to find whatever she could find to bring some relief.
With no saliva being produced (glands wiped out by the radiation, temporarily we hope), the mouth fills with thick mucous. All I do is hold a glass of water in one hand to swish and a bucket in the other in which to spit. And then a towel to clean up the sticky mess. Not very polite company. Swallowing is not an option, and if you don't get rid of it, breathing is not an option. And it goes on pretty much around the clock.
So come Friday, Faith is looking for anything. So what does she find? 1) There's really not much you can do but swish and spit, and 2) some patients report the condition lasting for six weeks! So much for some good news on a Friday night.
But Saturday night, we turned a corner. Finally a good nights sleep. Only up a few times to clean out my mouth, and then back to sleep. I slept until 9 Sunday morning! I was so shocked I couldn't believe it and certainly uncertain about how long this improvement might last. Then Sunday night was the same. So now I'm thinking it's for real. Less mucous, less spitting, throat is better, and more swallowing. I even ate some soup for lunch today. So after two improved days, I decided I could share it without jinxing myself into some kind of relapse.
My neck is looking much better, too. At least that's what everyone says, but there's a whole different reason for the neck change.
Everyday I pick away all the loose, dead skin from the burn. I peel off the crusted, burned, darkened outer layer. It's the kind of picking-at-a-wound that my Mom would insist I quit if she were here, but she's not. And so far Faith hasn't caught me. So everyday I pick and everyday I'm told my neck is looking much better. I really think it is.
The last two days have seen a huge improvement and I know I should be patient and not expect this healing pace to continue. Unfortunately, patience is not exactly my strong suit. So we'll endeavor to take it one day at a time, and every now and then skip a day.
Last week was the toughest week we've had so far. Faith would wholeheartedly agree. By Friday night she was online trying to find whatever she could find to bring some relief.
With no saliva being produced (glands wiped out by the radiation, temporarily we hope), the mouth fills with thick mucous. All I do is hold a glass of water in one hand to swish and a bucket in the other in which to spit. And then a towel to clean up the sticky mess. Not very polite company. Swallowing is not an option, and if you don't get rid of it, breathing is not an option. And it goes on pretty much around the clock.
So come Friday, Faith is looking for anything. So what does she find? 1) There's really not much you can do but swish and spit, and 2) some patients report the condition lasting for six weeks! So much for some good news on a Friday night.
But Saturday night, we turned a corner. Finally a good nights sleep. Only up a few times to clean out my mouth, and then back to sleep. I slept until 9 Sunday morning! I was so shocked I couldn't believe it and certainly uncertain about how long this improvement might last. Then Sunday night was the same. So now I'm thinking it's for real. Less mucous, less spitting, throat is better, and more swallowing. I even ate some soup for lunch today. So after two improved days, I decided I could share it without jinxing myself into some kind of relapse.
My neck is looking much better, too. At least that's what everyone says, but there's a whole different reason for the neck change.
Everyday I pick away all the loose, dead skin from the burn. I peel off the crusted, burned, darkened outer layer. It's the kind of picking-at-a-wound that my Mom would insist I quit if she were here, but she's not. And so far Faith hasn't caught me. So everyday I pick and everyday I'm told my neck is looking much better. I really think it is.
The last two days have seen a huge improvement and I know I should be patient and not expect this healing pace to continue. Unfortunately, patience is not exactly my strong suit. So we'll endeavor to take it one day at a time, and every now and then skip a day.
Wednesday, August 26, 2009
Mixed Emotions -
I've finished my treatments and we're home! The last one was a real challenge, but we made it.
I know I should be elated, but I'm not. Oh, I'm delighted they're over, but it is not fulfilling. When you run the race, finish the race, cross the tape, and not know who won, it's a little hollow. All during the race (the treatments) you could see the benchmarks, track your movement, monitor your efforts. Now all the benchmarks are gone. And apparently the results are weeks, if not months, away.
What we have learned is that radiation continues to do its thing several days after the last exposure. We've also learned it'll be two to four weeks to heal from these treatments. Not really the kind of reward one would expect for completing the gauntlet.
It's been ten days since the last chemo, so I think most of that is out of my body. What I'm feeling now I call radiation sickness. No one else has called it that, it's just what I call it. I still need to take my anti nausea meds. Whatever it is, I'm ready for it to leave.
We see the doctors again in two weeks. Our goal is to be well over the hump by that time and feeling much better. The most immediate challenge is to eat again and we're going to attempt that later today. I know it doesn't sound like much of a challenge, but just not knowing if you can, is a bit daunting. I've been warned if I don't soon swallow, I might not be able, and we haven't really eaten for several weeks. Here's to real food.
I've finished my treatments and we're home! The last one was a real challenge, but we made it.
I know I should be elated, but I'm not. Oh, I'm delighted they're over, but it is not fulfilling. When you run the race, finish the race, cross the tape, and not know who won, it's a little hollow. All during the race (the treatments) you could see the benchmarks, track your movement, monitor your efforts. Now all the benchmarks are gone. And apparently the results are weeks, if not months, away.
What we have learned is that radiation continues to do its thing several days after the last exposure. We've also learned it'll be two to four weeks to heal from these treatments. Not really the kind of reward one would expect for completing the gauntlet.
It's been ten days since the last chemo, so I think most of that is out of my body. What I'm feeling now I call radiation sickness. No one else has called it that, it's just what I call it. I still need to take my anti nausea meds. Whatever it is, I'm ready for it to leave.
We see the doctors again in two weeks. Our goal is to be well over the hump by that time and feeling much better. The most immediate challenge is to eat again and we're going to attempt that later today. I know it doesn't sound like much of a challenge, but just not knowing if you can, is a bit daunting. I've been warned if I don't soon swallow, I might not be able, and we haven't really eaten for several weeks. Here's to real food.
Saturday, August 22, 2009
Feeling Better -
Some have asked and I'm sure many have guessed, and you are all correct......the past few days have been a little rough. I'm taking more pills than I've ever seen, but they seem to be working. They kept my nausea under control all week which means this week was better than last.....I think.
It's getting difficult to talk (no comments necessary) and the radiation on my neck is suddenly taking a toll. It's burned, blistered, peeling, and turning black. But just one more zap attack and then we go into full tilt healing mode. I'm hoping we can turn the corner in a couple of weeks.
People continue to amaze us. Last week while I was in the lead-lined radiation room, Faith was working a puzzle in the lobby. A woman wearing the telltale badge of a cancer fighter, the colorful scarf covering a smooth head coordinated with an equally colorful blouse, was speaking with the staff. She was having to start treatments all over again and was obviously distraught. Apparently her breast cancer was more aggressive than the doctors had originally thought.
On the way out of the Radiation Center, the same lady was standing curbside, apparently awaiting a ride. Faith was just starting to explain her plight to me as we passed. That's when the woman looked up and said to Faith, "You have a beautiful smile."
Faith cried all the way home. Okay, so we both cried.
Some have asked and I'm sure many have guessed, and you are all correct......the past few days have been a little rough. I'm taking more pills than I've ever seen, but they seem to be working. They kept my nausea under control all week which means this week was better than last.....I think.
It's getting difficult to talk (no comments necessary) and the radiation on my neck is suddenly taking a toll. It's burned, blistered, peeling, and turning black. But just one more zap attack and then we go into full tilt healing mode. I'm hoping we can turn the corner in a couple of weeks.
People continue to amaze us. Last week while I was in the lead-lined radiation room, Faith was working a puzzle in the lobby. A woman wearing the telltale badge of a cancer fighter, the colorful scarf covering a smooth head coordinated with an equally colorful blouse, was speaking with the staff. She was having to start treatments all over again and was obviously distraught. Apparently her breast cancer was more aggressive than the doctors had originally thought.
On the way out of the Radiation Center, the same lady was standing curbside, apparently awaiting a ride. Faith was just starting to explain her plight to me as we passed. That's when the woman looked up and said to Faith, "You have a beautiful smile."
Faith cried all the way home. Okay, so we both cried.
Wednesday, August 19, 2009
Dancin' and Bands -
Today we see if the new drugs are going to help. Wednesday is the typical get sick day, so......
Actually, it's time to reveal the title for this blog. From the start it seemed right, and it still feels like a good fit, but let me explain.
One of the first cards I got came from Bill and Gayle Robinson. We know Bill and Gayle mostly through our radio show and running into them at the restaurant. They also caught me by surprise at one of my early screening visits to the Huntsman Center. The meeting was purely by chance, but I digress.
The card was lovely, but what they wrote has become my motto for moving forward, my outlook on life, my motivation to do when not feeling like doing. I don't know who to credit for first saying it, but nevertheless, here it is.
Life is not waiting for the storm to pass,
But learning to dance in the rain.
It's what we've been doing since June 10th......our rain dance day. We find ways to dance in the rain. This blog has been one of those dances, hence the title, Dancin' in the Rain.
Now the blue bands have nothing to do with music or dancing. The Huntsman Center sells blue wrist bands, not unlike the yellow bands that support the Lance Armstrong Foundation. The proceeds from these blue bands support cancer research at the Huntsman. They are engraved with "A Reason to Hope".
Faith decided to bring a bunch of these blue bands home and ask people to wear them to show support and hope for my cancer fight. Well, there are now blue bands everywhere. Twenty became fifty that quickly turned into a hundred. I think at last count, she's bought two hundred blue wrist bands. The Huntsman center knows her well.......she's the woman who, by far, has bought the most bands ever. And yes, they mean a bundle to me. So if you see someone with a fat, blue rubber band on their wrist, you now know why.
Next - I don't have a clue
Today we see if the new drugs are going to help. Wednesday is the typical get sick day, so......
Actually, it's time to reveal the title for this blog. From the start it seemed right, and it still feels like a good fit, but let me explain.
One of the first cards I got came from Bill and Gayle Robinson. We know Bill and Gayle mostly through our radio show and running into them at the restaurant. They also caught me by surprise at one of my early screening visits to the Huntsman Center. The meeting was purely by chance, but I digress.
The card was lovely, but what they wrote has become my motto for moving forward, my outlook on life, my motivation to do when not feeling like doing. I don't know who to credit for first saying it, but nevertheless, here it is.
Life is not waiting for the storm to pass,
But learning to dance in the rain.
It's what we've been doing since June 10th......our rain dance day. We find ways to dance in the rain. This blog has been one of those dances, hence the title, Dancin' in the Rain.
Now the blue bands have nothing to do with music or dancing. The Huntsman Center sells blue wrist bands, not unlike the yellow bands that support the Lance Armstrong Foundation. The proceeds from these blue bands support cancer research at the Huntsman. They are engraved with "A Reason to Hope".
Faith decided to bring a bunch of these blue bands home and ask people to wear them to show support and hope for my cancer fight. Well, there are now blue bands everywhere. Twenty became fifty that quickly turned into a hundred. I think at last count, she's bought two hundred blue wrist bands. The Huntsman center knows her well.......she's the woman who, by far, has bought the most bands ever. And yes, they mean a bundle to me. So if you see someone with a fat, blue rubber band on their wrist, you now know why.
Next - I don't have a clue
Tuesday, August 18, 2009
The Other Side of the Fence -
I've never been on this side of the fence before. That is to say, I've never been the one with the life threatening illness or injury. It's been an eye opener and one I'd like to share. Specifically, I'd like to share two lessons.
First, the importance of a card. The importance of a greeting card, email, phone call, basket, letter, or visit cannot be overstated. I can now personally tell you it's substantially bigger than huge. The knowledge that someone would use their own limited supply of time to find a card, contemplate what to write, seek out an address and mail it to me takes me to my knees. It is such a powerful act, such a statement of caring! To all of you, I can only say thank you, because I don't know a way to pay back what you've given me. It's much needed strength and hope when the body and spirit are being robbed of both and in sore need of resupply. I've received baskets, books, group cards, personally compiled music cd's, stuffed animals, plaques with inspirational words, cards, and offers of helping hands. THANK YOU!
Let me share how I read a card. Please, take no offense, because I know a lot of thought, effort, and time goes into choosing the card and deciding what to write. But I start at the bottom and read who it's from. At that point, whatever words are in the card are drowned out by the roar of the action taken by that person. All I hear is this person cared and I sit in bewilderment and wonderment. Then I read what they write, and don't worry, it's always right. And then, through blurry, tear-filled eyes, I read the prewritten message. The power of the card.....oh, my.......or a phone call or a quick email!
And what you say is really secondary to what you've done. I've had people say, "If there's anything we can do, let us know". By that time, they've already done it. They told me they cared....and after that, what more is there to be done?
Second, the shame lesson. The second lesson is shame on me. Shame, shame, shame....for having so many opportunities to tell someone I cared and not doing it. All those times when I rationalized my way out of action with 'I don't know what to say, I don't know what hospital they're in, I don't have an address, I don't have time', or whatever other lame excuse I let get in the way. Thanks to cancer and thanks to all of you, I now understand.
And as the first step in my penance, I'm sending a card to Howard Logan. Howard has been told his cancer is terminal and he has no hope. I'm going to tell him I'm praying for a miracle. Maybe you could send a card, too. His address is 580 Lombard, Green River, WY 82935.
Next - Blue Bands and Rain Dancin'
I've never been on this side of the fence before. That is to say, I've never been the one with the life threatening illness or injury. It's been an eye opener and one I'd like to share. Specifically, I'd like to share two lessons.
First, the importance of a card. The importance of a greeting card, email, phone call, basket, letter, or visit cannot be overstated. I can now personally tell you it's substantially bigger than huge. The knowledge that someone would use their own limited supply of time to find a card, contemplate what to write, seek out an address and mail it to me takes me to my knees. It is such a powerful act, such a statement of caring! To all of you, I can only say thank you, because I don't know a way to pay back what you've given me. It's much needed strength and hope when the body and spirit are being robbed of both and in sore need of resupply. I've received baskets, books, group cards, personally compiled music cd's, stuffed animals, plaques with inspirational words, cards, and offers of helping hands. THANK YOU!
Let me share how I read a card. Please, take no offense, because I know a lot of thought, effort, and time goes into choosing the card and deciding what to write. But I start at the bottom and read who it's from. At that point, whatever words are in the card are drowned out by the roar of the action taken by that person. All I hear is this person cared and I sit in bewilderment and wonderment. Then I read what they write, and don't worry, it's always right. And then, through blurry, tear-filled eyes, I read the prewritten message. The power of the card.....oh, my.......or a phone call or a quick email!
And what you say is really secondary to what you've done. I've had people say, "If there's anything we can do, let us know". By that time, they've already done it. They told me they cared....and after that, what more is there to be done?
Second, the shame lesson. The second lesson is shame on me. Shame, shame, shame....for having so many opportunities to tell someone I cared and not doing it. All those times when I rationalized my way out of action with 'I don't know what to say, I don't know what hospital they're in, I don't have an address, I don't have time', or whatever other lame excuse I let get in the way. Thanks to cancer and thanks to all of you, I now understand.
And as the first step in my penance, I'm sending a card to Howard Logan. Howard has been told his cancer is terminal and he has no hope. I'm going to tell him I'm praying for a miracle. Maybe you could send a card, too. His address is 580 Lombard, Green River, WY 82935.
Next - Blue Bands and Rain Dancin'
Monday, August 17, 2009
Radiation, but first an update -
We (Faith and I) are back in Salt Lake and this is the best I've felt since last Wednesday, just in time for another juice break. Today I get three new prescriptions for anti nausea medicine, plus I keep all the old ones. This stuff is crazy. Typically I've been told you shouldn't mix medications. Not here. Take this and if it doesn't work, take this one thirty minutes later! Stay with what you're doing and add these three pills on top of everything else. So far no marijuana or opium, but I did get a steroid. Guess I'll have to sit out the first few NFL games this year. About Wednesday we'll find out if any of these concoctions work.
But there is jubilation in Mudville. Today was the last chemo treatment and to mark the occasion, all the nurses and even some of the patients joined in song to send me off. I told you this juice bar is a very social gathering. There were plenty of hugs and even a going away gift......a blanket from the infusion room. I was most grateful and told all the nurses I meant no disrespect, but hoped I'd never see them again.
Whereas chemo is a social event, radiations is a solo event. There's one machine, one lead lined room, and one board to strap you on. The door to the room is about five inches thick........lead.....must weigh a thousand pounds.
In my case I wear a perforated mask (I hope to have a picture of it here soon) that is snapped tightly to the board so I can't move. I tried to open my eyes once, but that was a mistake. The mask was so tight I couldn't get them closed again. To be sure I'm lined up the same way each time, they gave me a tattoo on my chest the first day, and that's the reference point. So now I have something in common with all three of my kids, but I'm still not inclined to get any body art voluntarily. That now leaves Faith pondering if there is a tattoo in her future.
My radiation is tougher than most because of the cancer location and the side affects of the treatment, but I'm assured it's no tougher than anyone else with a similar diagnosis. I'm under the gun about eight minutes. I feel nothing at the time......but it's like too many trips to the tanning bed. I'm starting to burn, inside and out. I compare it to a giant microwave oven. They seem to cook from the inside out. Well, I'm in the oven, and I get eight minutes at the defrost level everyday. My neck is getting red and starting to show some blistering, but inside........oh my! The doctor called it "a bad ass sunburn". Maybe I could be a football cheerleader......I know Raw, Raw, Raw.
Again, we are on the downhill side..........only five more to go.
And now I've got to tell you about my Angel. Faith has been beyond awesome. She makes sure I'm on the right meds at the right time, she keeps me fed (only down eight pounds as of today), takes care of the radio stations on the weekends, and still manages to clean and do all the laundry. She literally works constantly from Friday afternoon until Sunday night. I know she's beat, but she is always upbeat, full of encouragement, and never a complaint. I can't explain how wonderful this woman is........and tough. Just a word of advice. Don't mess with her, and believe me, I'm following my own advice.
Next - What I've learned from being on the other side.
We (Faith and I) are back in Salt Lake and this is the best I've felt since last Wednesday, just in time for another juice break. Today I get three new prescriptions for anti nausea medicine, plus I keep all the old ones. This stuff is crazy. Typically I've been told you shouldn't mix medications. Not here. Take this and if it doesn't work, take this one thirty minutes later! Stay with what you're doing and add these three pills on top of everything else. So far no marijuana or opium, but I did get a steroid. Guess I'll have to sit out the first few NFL games this year. About Wednesday we'll find out if any of these concoctions work.
But there is jubilation in Mudville. Today was the last chemo treatment and to mark the occasion, all the nurses and even some of the patients joined in song to send me off. I told you this juice bar is a very social gathering. There were plenty of hugs and even a going away gift......a blanket from the infusion room. I was most grateful and told all the nurses I meant no disrespect, but hoped I'd never see them again.
Whereas chemo is a social event, radiations is a solo event. There's one machine, one lead lined room, and one board to strap you on. The door to the room is about five inches thick........lead.....must weigh a thousand pounds.
In my case I wear a perforated mask (I hope to have a picture of it here soon) that is snapped tightly to the board so I can't move. I tried to open my eyes once, but that was a mistake. The mask was so tight I couldn't get them closed again. To be sure I'm lined up the same way each time, they gave me a tattoo on my chest the first day, and that's the reference point. So now I have something in common with all three of my kids, but I'm still not inclined to get any body art voluntarily. That now leaves Faith pondering if there is a tattoo in her future.
My radiation is tougher than most because of the cancer location and the side affects of the treatment, but I'm assured it's no tougher than anyone else with a similar diagnosis. I'm under the gun about eight minutes. I feel nothing at the time......but it's like too many trips to the tanning bed. I'm starting to burn, inside and out. I compare it to a giant microwave oven. They seem to cook from the inside out. Well, I'm in the oven, and I get eight minutes at the defrost level everyday. My neck is getting red and starting to show some blistering, but inside........oh my! The doctor called it "a bad ass sunburn". Maybe I could be a football cheerleader......I know Raw, Raw, Raw.
Again, we are on the downhill side..........only five more to go.
And now I've got to tell you about my Angel. Faith has been beyond awesome. She makes sure I'm on the right meds at the right time, she keeps me fed (only down eight pounds as of today), takes care of the radio stations on the weekends, and still manages to clean and do all the laundry. She literally works constantly from Friday afternoon until Sunday night. I know she's beat, but she is always upbeat, full of encouragement, and never a complaint. I can't explain how wonderful this woman is........and tough. Just a word of advice. Don't mess with her, and believe me, I'm following my own advice.
Next - What I've learned from being on the other side.
Saturday, August 15, 2009
I Would Have Made You Proud??????? -
I've ignored the blog for a few days because I just didn't feel up to writing anything. It was a tough week, just when I was hoping it wouldn't get any tougher.
Faith and I met with the head and neck cancer specialist on Wednesday. He was very upbeat about our progress and had lots of positive things to say about where our treatment is going. But he also said this appointment was mostly a pep talk to get me through the rest of the regiment. He emphasized how important it was not to miss any scheduled treatments and how it would get tough from here out. That was about 2 pm and I'm starting to think this guy is a clairvoyant.
By 4 pm I was on all fours in my in-laws back yard changing their beautiful lush green grass into a chunky tan color. Where's that doctor that said I wouldn't throw up?
That action continued into the evening and resumed the next morning. I did manage to get through a radiation treatment without redecorating the zap room, but it was a struggle. I saw a doctor following radiation and she decided I was dehydrated and lacking nutrition and that's what was causing my upset stomach. She suggested I be admitted for 24 to 48 hours to get my body "tuned up".
We went to the Huntsman Center for that, where a great nurse, Diane, took great care of me. They gave me two liters of sugar water to hydrate me and did some blood work to see what shape I was really in. The decision was not to admit me, I was a little low, but the hydration should work and I would be good to go. Again, the theory was the dehydration was causing my upset stomach.
Now the good part. After two hours of fluids through an IV, they say I can go. I walk out the front door of the Huntsman Center and before stepping off the curb, began to hurl. Most of it goes into a curbside garbage receptacle, but I'm sure it was a spectacle to witness......not that I was paying any attention.
I turned around, walked back inside and said that didn't work. Another call to the doctor who said I wouldn't vomit and he reports back to the nurse......"I think it's the chemo." Well, well, at least we are all back on the same page. I think I remember saying that two weeks ago in this blog.
With a flurry of medicines (it seems like they come continually) I been holding my own since Thursday afternoon. They keep telling me marijuana or opium is next and I keep telling them I don't have either. My last chemo is Monday and there will be a different anti nausea drug during the infusion. I really don't care what it is, just so it works better this time.
I did manage another radiation treatment Friday before coming home.
So here's the box score. Six chemos.......five down......one to go.
Thirty rads.......24 down.......six to go.
And so far we haven't missed a one!
And eating through a feeding tube does have some advantages. No dishes to wash, no meals to prepare, you eat in front of the TV, and it only takes a minute.
Next.......who knows? -
I've ignored the blog for a few days because I just didn't feel up to writing anything. It was a tough week, just when I was hoping it wouldn't get any tougher.
Faith and I met with the head and neck cancer specialist on Wednesday. He was very upbeat about our progress and had lots of positive things to say about where our treatment is going. But he also said this appointment was mostly a pep talk to get me through the rest of the regiment. He emphasized how important it was not to miss any scheduled treatments and how it would get tough from here out. That was about 2 pm and I'm starting to think this guy is a clairvoyant.
By 4 pm I was on all fours in my in-laws back yard changing their beautiful lush green grass into a chunky tan color. Where's that doctor that said I wouldn't throw up?
That action continued into the evening and resumed the next morning. I did manage to get through a radiation treatment without redecorating the zap room, but it was a struggle. I saw a doctor following radiation and she decided I was dehydrated and lacking nutrition and that's what was causing my upset stomach. She suggested I be admitted for 24 to 48 hours to get my body "tuned up".
We went to the Huntsman Center for that, where a great nurse, Diane, took great care of me. They gave me two liters of sugar water to hydrate me and did some blood work to see what shape I was really in. The decision was not to admit me, I was a little low, but the hydration should work and I would be good to go. Again, the theory was the dehydration was causing my upset stomach.
Now the good part. After two hours of fluids through an IV, they say I can go. I walk out the front door of the Huntsman Center and before stepping off the curb, began to hurl. Most of it goes into a curbside garbage receptacle, but I'm sure it was a spectacle to witness......not that I was paying any attention.
I turned around, walked back inside and said that didn't work. Another call to the doctor who said I wouldn't vomit and he reports back to the nurse......"I think it's the chemo." Well, well, at least we are all back on the same page. I think I remember saying that two weeks ago in this blog.
With a flurry of medicines (it seems like they come continually) I been holding my own since Thursday afternoon. They keep telling me marijuana or opium is next and I keep telling them I don't have either. My last chemo is Monday and there will be a different anti nausea drug during the infusion. I really don't care what it is, just so it works better this time.
I did manage another radiation treatment Friday before coming home.
So here's the box score. Six chemos.......five down......one to go.
Thirty rads.......24 down.......six to go.
And so far we haven't missed a one!
And eating through a feeding tube does have some advantages. No dishes to wash, no meals to prepare, you eat in front of the TV, and it only takes a minute.
Next.......who knows? -
Wednesday, August 12, 2009
Treatment -
My treatment protocol has been a combination of chemo and radiation, and today I'll share some thoughts on chemo.......old hat to anyone who has been through this......but all new to me.
I thought chemo was a nasty drug they gave cancer patients. Not quite. Chemo is short for chemotherapy, which I surmise is a medical term for chemical therapy. I think it can best be compared to physical therapy, or occupational therapy, or psycho therapy, or any other kind of therapy. Chemical therapy is not a medicine, but a method. And just as with other therapies, different conditions require different methods with different results and different side effects.
That's why when someone says so and so had chemo and this is what happened, it likely will not relate to you. No more than a physical therapy regiment for a hip replacement would be similar to the regiment for a shoulder injury.
What I have learned is there are various medicines used in chemotherapy, there can be mixtures of drugs used (sometimes called cocktails) and there are different doses and different intervals. Couple that with the differences in individual's health and fitness levels and you have a plethora of possible reactions to chemo.
I take a hot drug called cisplatin. In my case it is not the primary cancer fighter, but is designed to make the cancer cells more receptive to radiation. The dosage is low enough that I haven't, and likely won't, lose my hair. But I get it every week so it makes me sick and screws up the taste of food. I used to be able to recover during the week, but the cumulative effect has put a stop to that.
Taking chemo is a social affair. They call the chemo room the infusion center......I call it the juice bar. It's a large room lined with recliners. Attendants bring you drinks, snacks, warm blankets and pillows, and most have a private TV. The only clue this isn't a party is that everyone is hooked to their own tree of IV bags. It's a drug users catered salon. And some of the stuff is pretty potent. For example, the nurses don low level radiation protection clothing when they bring me my cisplatin. I think it's a derivative of platinum. This stuff is so potent they warn you not to share body fluids with your partner for at least two days after infusion so you won't give them a chemo treatment. As if any such activity was any where near my top of mind thinking!
It's about a four to five hour stop at the juice bar and I'm delighted I have only one more session.
Next - The other shoe.....radiation
My treatment protocol has been a combination of chemo and radiation, and today I'll share some thoughts on chemo.......old hat to anyone who has been through this......but all new to me.
I thought chemo was a nasty drug they gave cancer patients. Not quite. Chemo is short for chemotherapy, which I surmise is a medical term for chemical therapy. I think it can best be compared to physical therapy, or occupational therapy, or psycho therapy, or any other kind of therapy. Chemical therapy is not a medicine, but a method. And just as with other therapies, different conditions require different methods with different results and different side effects.
That's why when someone says so and so had chemo and this is what happened, it likely will not relate to you. No more than a physical therapy regiment for a hip replacement would be similar to the regiment for a shoulder injury.
What I have learned is there are various medicines used in chemotherapy, there can be mixtures of drugs used (sometimes called cocktails) and there are different doses and different intervals. Couple that with the differences in individual's health and fitness levels and you have a plethora of possible reactions to chemo.
I take a hot drug called cisplatin. In my case it is not the primary cancer fighter, but is designed to make the cancer cells more receptive to radiation. The dosage is low enough that I haven't, and likely won't, lose my hair. But I get it every week so it makes me sick and screws up the taste of food. I used to be able to recover during the week, but the cumulative effect has put a stop to that.
Taking chemo is a social affair. They call the chemo room the infusion center......I call it the juice bar. It's a large room lined with recliners. Attendants bring you drinks, snacks, warm blankets and pillows, and most have a private TV. The only clue this isn't a party is that everyone is hooked to their own tree of IV bags. It's a drug users catered salon. And some of the stuff is pretty potent. For example, the nurses don low level radiation protection clothing when they bring me my cisplatin. I think it's a derivative of platinum. This stuff is so potent they warn you not to share body fluids with your partner for at least two days after infusion so you won't give them a chemo treatment. As if any such activity was any where near my top of mind thinking!
It's about a four to five hour stop at the juice bar and I'm delighted I have only one more session.
Next - The other shoe.....radiation
Tuesday, August 11, 2009
How I Knew -
Many people have asked how I found out I had cancer or how I knew.
You know. Listen to your body, pay attention to your temple from God, be in touch with your intuitive self, and you will know. And if that doesn't work, go the the doctor immediately when something isn't right.
It was Good Friday, and my son-in-law, Chad, and I were in a golf tournament in Mesquite. We had an early tee time and while shaving, nothing was unusual. By Friday afternoon I had a racquet ball size lump on my neck. I didn't know what it was......but I did. I knew because I was scared. I called Faith because I was scared. I hoped for the best but my gut had the inside track.
What followed is pretty routine, assuming you don't ignore the obvious. I got an appointment on Monday at Castle Rock with Mr. Bryce Wylie, a PA at the hospital district. He put me on antibiotics to determine if it was an infection. He was good. In ten days, and no change, he sent me to an Ear, Nose, and Throat specialist. That's when I met Dr. Haack of Evanston. He looked, probed, set up an MRI and a biopsy. The visual exam revealed nothing, the MRI was clean, and the biopsy came back inconclusive. I was starting to hope for the best; Dr. Haack was convinced to move forward.
Next was a PET scan in Salt Lake City. Now every step takes time. It takes time to get the appointment, to do the test,l to get the results, to plan the next step, to get the next results. It had been over six weeks of ups and downs and I no longer cared whether I had cancer or not. I just wanted to know! I wanted an answer so we could move on, one way or the other.
When you get the answer you don't want.....well it becomes one of those dates. You never forget it, you forever remember where you were, who you were with, and what you were doing.
It was June 10th. Faith and I were shopping for bedding in Las Vegas for a house which we had just taken possession. We were in the parking lot when Dr. Haack called. He said they had found the primary source of the cancer......a small spot on my tonsil. I had a full body scan and he encouraged me by saying here were no indications of any other cancer but that one. Somehow that was little consolation to hearing.....you have cancer. Then you ask stupid questions. The doctor said the cancer was very small. I asked what if we did nothing. He calmly and matter of factly told me it would kill me. Well that certainly refocuses your thinking.
It was time for some heavy artillery, and before we got back toGreen River, we had a head and neck cancer specialist at the Huntsman Center and a surgery date set for the next week. We had found the enemy, and we were preparing to declare all out war. Some serious strategy planning was next.
Many people have asked how I found out I had cancer or how I knew.
You know. Listen to your body, pay attention to your temple from God, be in touch with your intuitive self, and you will know. And if that doesn't work, go the the doctor immediately when something isn't right.
It was Good Friday, and my son-in-law, Chad, and I were in a golf tournament in Mesquite. We had an early tee time and while shaving, nothing was unusual. By Friday afternoon I had a racquet ball size lump on my neck. I didn't know what it was......but I did. I knew because I was scared. I called Faith because I was scared. I hoped for the best but my gut had the inside track.
What followed is pretty routine, assuming you don't ignore the obvious. I got an appointment on Monday at Castle Rock with Mr. Bryce Wylie, a PA at the hospital district. He put me on antibiotics to determine if it was an infection. He was good. In ten days, and no change, he sent me to an Ear, Nose, and Throat specialist. That's when I met Dr. Haack of Evanston. He looked, probed, set up an MRI and a biopsy. The visual exam revealed nothing, the MRI was clean, and the biopsy came back inconclusive. I was starting to hope for the best; Dr. Haack was convinced to move forward.
Next was a PET scan in Salt Lake City. Now every step takes time. It takes time to get the appointment, to do the test,l to get the results, to plan the next step, to get the next results. It had been over six weeks of ups and downs and I no longer cared whether I had cancer or not. I just wanted to know! I wanted an answer so we could move on, one way or the other.
When you get the answer you don't want.....well it becomes one of those dates. You never forget it, you forever remember where you were, who you were with, and what you were doing.
It was June 10th. Faith and I were shopping for bedding in Las Vegas for a house which we had just taken possession. We were in the parking lot when Dr. Haack called. He said they had found the primary source of the cancer......a small spot on my tonsil. I had a full body scan and he encouraged me by saying here were no indications of any other cancer but that one. Somehow that was little consolation to hearing.....you have cancer. Then you ask stupid questions. The doctor said the cancer was very small. I asked what if we did nothing. He calmly and matter of factly told me it would kill me. Well that certainly refocuses your thinking.
It was time for some heavy artillery, and before we got back toGreen River, we had a head and neck cancer specialist at the Huntsman Center and a surgery date set for the next week. We had found the enemy, and we were preparing to declare all out war. Some serious strategy planning was next.
Monday, August 10, 2009
Met The Man -
We're back in Salt Lake City......Faith, Maddux, and me. Thanks to Chad and Adrienne for letting the little guy go with me. He takes care of me in more ways than one.
The weekend was not what I had hoped for. Oh, the birthday party was marvelous and so was all the company, but I just didn't recover this weekend like I have in the past. To paraphrase a politician.....it's the chemo, stupid.
So another round of chemo today and another dose of radiation and actually I don't feel too bad. The anti-nausea drug they give me in my IV before the chemo drug must be pretty good stuff. I need to find some more of that.
The highlight of the day came in the middle of my chemo treatment. I was alone in the overflow room when in walked Jon Huntsman and Mark Koebel (sp). No, not the governor, but the main man, Mr. Jon Huntsman, Sr., he who built the Huntsman Cancer Center. I told him it was a great place, but that I was sorry I was there. Mark, anchor for Channel 2, was there with a camera crew. Our meeting was brief, but memorable. Mr. Huntsman asked me what kind of cancer I had and then said, "We do great things here. You're going to be alright." I thanked him and said I'd hold him to that.
I continue to receive cards and phone calls and I just can't express how meaningful they are. Thank you to everyone for all of our support......spoken and unspoken. I have so many people to thank that I hesitate to single anyone out, but the story is worth sharing. Every Monday evening in Salt Lake City, I get mail. It follows a long day, a day of leaving Green River at 7 AM, being strapped to the juice chair at 10, heading cross town to radiation about 3 PM and getting to my in-laws about 4. Mail call is at 5, and every Monday I get a greeting card wishing me well. I know there is a very special place in heaven for people like Bob Spicer.
If you're counting, this is number five and I'm going strong. My white blood cell count has actually gone UP. That got their attention! It looks like I've got the green light for the sixth and final treatment in a week. Radiation will take a little longer, but it seems to be working. The lump on my neck as shrunken dramatically.........like to a fourth its original size. The care is good, but your prayers are awesomely powerful.
Next -
More on chemo from a layman with an up close experience.
We're back in Salt Lake City......Faith, Maddux, and me. Thanks to Chad and Adrienne for letting the little guy go with me. He takes care of me in more ways than one.
The weekend was not what I had hoped for. Oh, the birthday party was marvelous and so was all the company, but I just didn't recover this weekend like I have in the past. To paraphrase a politician.....it's the chemo, stupid.
So another round of chemo today and another dose of radiation and actually I don't feel too bad. The anti-nausea drug they give me in my IV before the chemo drug must be pretty good stuff. I need to find some more of that.
The highlight of the day came in the middle of my chemo treatment. I was alone in the overflow room when in walked Jon Huntsman and Mark Koebel (sp). No, not the governor, but the main man, Mr. Jon Huntsman, Sr., he who built the Huntsman Cancer Center. I told him it was a great place, but that I was sorry I was there. Mark, anchor for Channel 2, was there with a camera crew. Our meeting was brief, but memorable. Mr. Huntsman asked me what kind of cancer I had and then said, "We do great things here. You're going to be alright." I thanked him and said I'd hold him to that.
I continue to receive cards and phone calls and I just can't express how meaningful they are. Thank you to everyone for all of our support......spoken and unspoken. I have so many people to thank that I hesitate to single anyone out, but the story is worth sharing. Every Monday evening in Salt Lake City, I get mail. It follows a long day, a day of leaving Green River at 7 AM, being strapped to the juice chair at 10, heading cross town to radiation about 3 PM and getting to my in-laws about 4. Mail call is at 5, and every Monday I get a greeting card wishing me well. I know there is a very special place in heaven for people like Bob Spicer.
If you're counting, this is number five and I'm going strong. My white blood cell count has actually gone UP. That got their attention! It looks like I've got the green light for the sixth and final treatment in a week. Radiation will take a little longer, but it seems to be working. The lump on my neck as shrunken dramatically.........like to a fourth its original size. The care is good, but your prayers are awesomely powerful.
Next -
More on chemo from a layman with an up close experience.
Friday, August 7, 2009
Ramblings -
Today is a ramble day. That's not an excuse, nor an apology, just a fact. I had intended to describe my treatment regiment, but it doesn't seem important right now. And it's partly Faith's fault. She said write how you feel. Bad timing.
This has been the toughest week and yesterday the roughest day. I'm approaching the end of round ten, but it's a fifteen rounder. So far I haven't taken any hard punches, but the punches are taking their toll.
They've come a long way with chemo. You don't throw up any more. The doctors are proud of that and will tell you, many times......you won't throw up. So far with me, they're right. Now it's an easy leap from "you won't throw up" to thinking "I won't feel sick". Wrong leap. At last count I have seven anti-nausea medicines.....or maybe eight.....or if you count the one they put in my IV, maybe nine. So what I think, is the meds keep you from actually tossing your cookies, while you continue to feel like you need to toss your cookies.
When you feel like things need to come up, the idea of putting anything down is out of the question. But that doesn't matter because the radiation has already taken away any desire to
eat. They (the doctors) told me that the radiation would make some food taste funny, like red meat and maybe something else that I can't remember. In my case it makes all food taste like......well.......like I wouldn't feed it to my dog, if I had a dog. It makes me an easy dinner date. I don't care what the menu looks like, I'm happy with a bowl of oatmeal. Yeh, oatmeal......like Mom used to make. Hey, she said it was good for me then so why wouldn't it be good for me now.
And then there's this phenomenon slangly called "chemo brain". A friend of Faith's, Laurie of Salt Lake City, told us about it. She's a beautiful, wig crested, 42 year old wife and mother of three little ones that is battling breast cancer. Faith used to babysit her and her sister. She told us chemo makes you a little goofy. In my case, Faith is wondering if she will notice any difference. Say a prayer for Laurie.......she's a tough girl with a tough fight.
It's go home day and that makes it a good day. It's also Maddux's birthday and that makes it a great day. Maddux is one of my three grandsons. There will be a big party tonight with the entire family in attendance, including my parents and Faith's parents, plus all the kids and Adrienne's in-laws from Idaho. I'm sure the cake and ice cream will be delicious. I'll just substitute a bottle of Ensure.
I slept good last night and today is a new day, with a fresh start. I also know Thursdays mark the crest of feeling bad for the week and that I will feel better today and even better over the weekend.
So that's my ramble.....thanks for bearing with me.
Today is a ramble day. That's not an excuse, nor an apology, just a fact. I had intended to describe my treatment regiment, but it doesn't seem important right now. And it's partly Faith's fault. She said write how you feel. Bad timing.
This has been the toughest week and yesterday the roughest day. I'm approaching the end of round ten, but it's a fifteen rounder. So far I haven't taken any hard punches, but the punches are taking their toll.
They've come a long way with chemo. You don't throw up any more. The doctors are proud of that and will tell you, many times......you won't throw up. So far with me, they're right. Now it's an easy leap from "you won't throw up" to thinking "I won't feel sick". Wrong leap. At last count I have seven anti-nausea medicines.....or maybe eight.....or if you count the one they put in my IV, maybe nine. So what I think, is the meds keep you from actually tossing your cookies, while you continue to feel like you need to toss your cookies.
When you feel like things need to come up, the idea of putting anything down is out of the question. But that doesn't matter because the radiation has already taken away any desire to
eat. They (the doctors) told me that the radiation would make some food taste funny, like red meat and maybe something else that I can't remember. In my case it makes all food taste like......well.......like I wouldn't feed it to my dog, if I had a dog. It makes me an easy dinner date. I don't care what the menu looks like, I'm happy with a bowl of oatmeal. Yeh, oatmeal......like Mom used to make. Hey, she said it was good for me then so why wouldn't it be good for me now.
And then there's this phenomenon slangly called "chemo brain". A friend of Faith's, Laurie of Salt Lake City, told us about it. She's a beautiful, wig crested, 42 year old wife and mother of three little ones that is battling breast cancer. Faith used to babysit her and her sister. She told us chemo makes you a little goofy. In my case, Faith is wondering if she will notice any difference. Say a prayer for Laurie.......she's a tough girl with a tough fight.
It's go home day and that makes it a good day. It's also Maddux's birthday and that makes it a great day. Maddux is one of my three grandsons. There will be a big party tonight with the entire family in attendance, including my parents and Faith's parents, plus all the kids and Adrienne's in-laws from Idaho. I'm sure the cake and ice cream will be delicious. I'll just substitute a bottle of Ensure.
I slept good last night and today is a new day, with a fresh start. I also know Thursdays mark the crest of feeling bad for the week and that I will feel better today and even better over the weekend.
So that's my ramble.....thanks for bearing with me.
Thursday, August 6, 2009
Diversion Day -
Today is a diversion day.....a day when something happened to change the intended direction of this discourse.
Cancer is a life changing event. I knew that and had often imagined what it was like to have cancer. The truth is, I knew nothing. I now know, and everything I once imagined was woefully inadequate.
Cancer makes big things little and makes small pleasures a big deal. It has a way of putting things into perspective. Many things that seemed important, really important, all but disappear when you hear the words, "You have cancer". Likewise, some of the purist, simplest pleasures in this world take on a huge significance. Another paradox of cancer.
Today it's jigsaw puzzles.....plain, simple, 1000 piece, 2000 piece, 500 piece, jigsaw puzzles. The first time you enter the Huntsman Center you notice them. They are everywhere. Some are idle, some are being tag teamed, others host a solitary, intent puzzle solver.
My first thought was these are provided to pass the inevitable hours waiting to see a doctor. Wrong! You rarely, if ever, wait to see a doctor. So, what's the deal? It's taken me several weeks and an incident yesterday to understand.
We have a puzzle under construction at the radiation center. Everyday, everyone who comes for a zap session puts in a puzzle piece or ten. Everyday you anxiously look to see the progress from when you left the day before. Did someone find that one piece you couldn't? Everyone working the puzzle is there for the same reason, but the puzzle gives us another commonality and something else to talk about. There was one piece no one could find until one woman found it in her purse at home and brought it back.
I'm not a puzzle guy.....even though they have some great Dowdle puzzles, as in those created by Eric Dowdle of Green River. So my goal is one puzzle piece a day, at least that's what the others have decided. Hey, it keeps me on the team.
But the puzzle means so much more. It's your reward for going to that hideous, whirring, burning, cancer killing machine everyday. It builds a comradeship with others walking in your shoes. But most important, it is a daily symbol of progress in a world where daily progress is invisible. When you battle cancer, you don't see or feel daily progress. In fact, each day of your treatment you feel worse. You don't get stronger from the cure, you get weaker. And you can't see any results and likely won't for months. That puzzle is your tangible record of moving forward.
Yesterday, somebody trashed our puzzle......tore it apart....dumped part of it on the floor....left only ten pieces intact. I know.....it was just a puzzle....but it was so much more. We all had a setback yesterday.
Today is a diversion day.....a day when something happened to change the intended direction of this discourse.
Cancer is a life changing event. I knew that and had often imagined what it was like to have cancer. The truth is, I knew nothing. I now know, and everything I once imagined was woefully inadequate.
Cancer makes big things little and makes small pleasures a big deal. It has a way of putting things into perspective. Many things that seemed important, really important, all but disappear when you hear the words, "You have cancer". Likewise, some of the purist, simplest pleasures in this world take on a huge significance. Another paradox of cancer.
Today it's jigsaw puzzles.....plain, simple, 1000 piece, 2000 piece, 500 piece, jigsaw puzzles. The first time you enter the Huntsman Center you notice them. They are everywhere. Some are idle, some are being tag teamed, others host a solitary, intent puzzle solver.
My first thought was these are provided to pass the inevitable hours waiting to see a doctor. Wrong! You rarely, if ever, wait to see a doctor. So, what's the deal? It's taken me several weeks and an incident yesterday to understand.
We have a puzzle under construction at the radiation center. Everyday, everyone who comes for a zap session puts in a puzzle piece or ten. Everyday you anxiously look to see the progress from when you left the day before. Did someone find that one piece you couldn't? Everyone working the puzzle is there for the same reason, but the puzzle gives us another commonality and something else to talk about. There was one piece no one could find until one woman found it in her purse at home and brought it back.
I'm not a puzzle guy.....even though they have some great Dowdle puzzles, as in those created by Eric Dowdle of Green River. So my goal is one puzzle piece a day, at least that's what the others have decided. Hey, it keeps me on the team.
But the puzzle means so much more. It's your reward for going to that hideous, whirring, burning, cancer killing machine everyday. It builds a comradeship with others walking in your shoes. But most important, it is a daily symbol of progress in a world where daily progress is invisible. When you battle cancer, you don't see or feel daily progress. In fact, each day of your treatment you feel worse. You don't get stronger from the cure, you get weaker. And you can't see any results and likely won't for months. That puzzle is your tangible record of moving forward.
Yesterday, somebody trashed our puzzle......tore it apart....dumped part of it on the floor....left only ten pieces intact. I know.....it was just a puzzle....but it was so much more. We all had a setback yesterday.
Wednesday, August 5, 2009
What Is It? -
In broad terms, I have a neck and head cancer. Don't ask me why this broad category exists, but there are cancer doctors, oncologists if you will, that specialize in neck and head cancers.
To be more specific, I have what is generally called an oral cancer. Precisely, I had cancer on my left tonsil. I say had, because I no longer have that tonsil or the primary tumor.
Cancers are named by the cells that have the tumor. That's my lay understanding, and this was initially confusing. I have squamous cell carcinoma. I thought squamous cell was the type of bug or disease, like polio or tetanus. Now I know we all have squamous cells. They are called flat cells and they line the mouth and throat and lots of other places in the body. They are also skin cells. When some of these cells go wacky and start growing wildly, you have a carcinoma, a cancerous tumor. Hence.....squamous cell carcinoma.
Cancers are measured by size and if they have spread. Sizes are T-1 to T-4 and movement is referenced by Stage 1 to Stage 4. My cancer was small, about one centimeter by one and a half centimeters. They called it a T-1 and that's good. But my cancer had moved by the time we found it and had been captured in at least four lymph nodes on the left side of my neck. That made it a Stage 3 or 4 cancer and that's not good.
When pieces of the primary source break off and start to move, that's called metastasis. For some reason I can't pronounce that word, and have equal difficulty spelling it, but metastasis is not good. The cancer cells seek to attack vital organs in the body. The body's first line of defense are the lymph nodes. For some sort of still unclear reason, this was important to me. I had always heard of cancers SPREADING to the lymph nodes, and that was usually followed by some dire predicted consequences. Now my understanding is these rogue cancer cells are CAPTURED by the lymph nodes and these gland-like things are protecting me. Still not good, but better than having cancer in my lungs or somewhere else to the south, which apparently could be expected if the lymph nodes weren't on the job.
And lastly, my cancer is viral, or virus caused. Testing of the removed tumor showed it was HPV positive. HPV is the human papilloma virus. Many more woman then men are familiar with this term because this is the virus that has been linked to cervical cancer. This is the virus that led to the controversial vaccine for young females. I remember those discussions and the medical recommendations, but admit I didn't pay much attention.
It turns out that cervical cancer is also squamous cell carcinoma. Recent research has been looking for a similar viral connection in some oral cancers. They found it in my case, and 1) that was good news (more on that later), and 2) I'm getting treatment that more resembles the protocol for cervical cancer patients that oral cancer patients.
NEXT -
How do you know you have cancer?
In broad terms, I have a neck and head cancer. Don't ask me why this broad category exists, but there are cancer doctors, oncologists if you will, that specialize in neck and head cancers.
To be more specific, I have what is generally called an oral cancer. Precisely, I had cancer on my left tonsil. I say had, because I no longer have that tonsil or the primary tumor.
Cancers are named by the cells that have the tumor. That's my lay understanding, and this was initially confusing. I have squamous cell carcinoma. I thought squamous cell was the type of bug or disease, like polio or tetanus. Now I know we all have squamous cells. They are called flat cells and they line the mouth and throat and lots of other places in the body. They are also skin cells. When some of these cells go wacky and start growing wildly, you have a carcinoma, a cancerous tumor. Hence.....squamous cell carcinoma.
Cancers are measured by size and if they have spread. Sizes are T-1 to T-4 and movement is referenced by Stage 1 to Stage 4. My cancer was small, about one centimeter by one and a half centimeters. They called it a T-1 and that's good. But my cancer had moved by the time we found it and had been captured in at least four lymph nodes on the left side of my neck. That made it a Stage 3 or 4 cancer and that's not good.
When pieces of the primary source break off and start to move, that's called metastasis. For some reason I can't pronounce that word, and have equal difficulty spelling it, but metastasis is not good. The cancer cells seek to attack vital organs in the body. The body's first line of defense are the lymph nodes. For some sort of still unclear reason, this was important to me. I had always heard of cancers SPREADING to the lymph nodes, and that was usually followed by some dire predicted consequences. Now my understanding is these rogue cancer cells are CAPTURED by the lymph nodes and these gland-like things are protecting me. Still not good, but better than having cancer in my lungs or somewhere else to the south, which apparently could be expected if the lymph nodes weren't on the job.
And lastly, my cancer is viral, or virus caused. Testing of the removed tumor showed it was HPV positive. HPV is the human papilloma virus. Many more woman then men are familiar with this term because this is the virus that has been linked to cervical cancer. This is the virus that led to the controversial vaccine for young females. I remember those discussions and the medical recommendations, but admit I didn't pay much attention.
It turns out that cervical cancer is also squamous cell carcinoma. Recent research has been looking for a similar viral connection in some oral cancers. They found it in my case, and 1) that was good news (more on that later), and 2) I'm getting treatment that more resembles the protocol for cervical cancer patients that oral cancer patients.
NEXT -
How do you know you have cancer?
Tuesday, August 4, 2009
The Decision -
I have been extremely hesitant to take this step, to write about my cancer, to be this personal in public. I feared it would be seen as an assumed pompous act, which I assure you it isn't, or a presumed act of import, which most certainly it is not. I'm taking this step for two reasons. I've learned a lot in the past few months and feel a responsibility to share with all who are interested. And two, I have received so many cards, visits, and phone calls with words of support and inquiries to my health, that I am overwhelmed and feel an obligation to share with all who care.
Step One -
I'm a talker....not a writer. So if at times I sound more awkward than usual, it's because I'm using unsharpened tools in inexperienced hands. I hope content overcomes deficiencies in style and technique. (I couldn't find a ghost writer.)
This will be a current affairs, sort of regular but not necessarily daily, contribution through The Radio Network website. Simply go to our website at www.theradionetwork.net and click on my blog (I think it will be a picture). Since I'm roughly half way through my treatment regiment, from time to time I'll flashback to some previous moments.
I welcome your responses and look forward to reading them. If my facts are wrong, please tell me so I can correct my mistakes. If our opinions disagree, I'll listen, but we still may disagree. And if my expressed feelings are different than yours.......that may never change, but I'll always respect what you feel. Know it is my deepest intention to offend no one.
Until now my personal life, in contrast to my fairly public professional life, been as private as was possible. This decision to share my personal life comes with some trepidation, but I think I'm prepared for the inevitable pitfalls and potholes along the way. The decision was actually made the day Faith and I announced on our radio show that I had cancer and we would be leaving the show for a couple of months.
Current Affairs -
I'm now in my fourth week of treatment. Treatment consists of chemotherapy once a week and radiation five times a week. I'm being treated at the Huntsman Cancer Institute in Salt Lake City as an out-patient and come home on weekends. Faith is with me most of the time, despite me assuring her she doesn't need to accompany me. One of things I've learned is that line is BS. I not only need her with me, it's important to the positive attitude required by the healing process.
How am I feeling? Well, a few months ago I was very sick and felt GREAT! Today, I'm still very sick, but I'm not feeling so good. Nothing bad.....yet......just not good. The nurses say that's good because it means the treatments is working. That's the upside down world of cancer. More on that later.
Next -
What kind of cancer do I have?
I have been extremely hesitant to take this step, to write about my cancer, to be this personal in public. I feared it would be seen as an assumed pompous act, which I assure you it isn't, or a presumed act of import, which most certainly it is not. I'm taking this step for two reasons. I've learned a lot in the past few months and feel a responsibility to share with all who are interested. And two, I have received so many cards, visits, and phone calls with words of support and inquiries to my health, that I am overwhelmed and feel an obligation to share with all who care.
Step One -
I'm a talker....not a writer. So if at times I sound more awkward than usual, it's because I'm using unsharpened tools in inexperienced hands. I hope content overcomes deficiencies in style and technique. (I couldn't find a ghost writer.)
This will be a current affairs, sort of regular but not necessarily daily, contribution through The Radio Network website. Simply go to our website at www.theradionetwork.net and click on my blog (I think it will be a picture). Since I'm roughly half way through my treatment regiment, from time to time I'll flashback to some previous moments.
I welcome your responses and look forward to reading them. If my facts are wrong, please tell me so I can correct my mistakes. If our opinions disagree, I'll listen, but we still may disagree. And if my expressed feelings are different than yours.......that may never change, but I'll always respect what you feel. Know it is my deepest intention to offend no one.
Until now my personal life, in contrast to my fairly public professional life, been as private as was possible. This decision to share my personal life comes with some trepidation, but I think I'm prepared for the inevitable pitfalls and potholes along the way. The decision was actually made the day Faith and I announced on our radio show that I had cancer and we would be leaving the show for a couple of months.
Current Affairs -
I'm now in my fourth week of treatment. Treatment consists of chemotherapy once a week and radiation five times a week. I'm being treated at the Huntsman Cancer Institute in Salt Lake City as an out-patient and come home on weekends. Faith is with me most of the time, despite me assuring her she doesn't need to accompany me. One of things I've learned is that line is BS. I not only need her with me, it's important to the positive attitude required by the healing process.
How am I feeling? Well, a few months ago I was very sick and felt GREAT! Today, I'm still very sick, but I'm not feeling so good. Nothing bad.....yet......just not good. The nurses say that's good because it means the treatments is working. That's the upside down world of cancer. More on that later.
Next -
What kind of cancer do I have?
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