No News is Good News
I continue with regular meetings k(every two months) with my doctors and continue to be told we are doing good. I just finished with the lead physician on our team and he's pleased, but tells me to be vigilant in monitoring my body and let him know immediately of any changes. I assured him I was intently intune with my physical being. Even things that are meaningless (like aches and pains) get extra attention. Not a pimple, blemish, cold sore, etc. goes unnoticed.
It's been 18 months since we concluded treatment. They won't say it's gone or if it's in remission or if we're good to go. No, that would be too much. My radiation oncologist did say she has never lost anyone who has made it this far. I concluded that was her indirect way of telling me we were good, even though they won't sign off till we are five years out. I told her I had no intention of scfrewing up her track record!
Looking back, it seems like all this was in a different life. Faith and I were talking about it the other night and agreed that it all seems so long, long ago. For me, much of it is a fog. I have always had a difficlut time remembering the details of bad things. Sometimes that's a good thing and sometimes it causes problems. In this case, I have Faith to provide all the details just in case something I've forgotten is important.
We continue to give thanks for our blessings and are always amazed at the concern expressed, still today, about our health. Life is good as we dance in a lot less rain.
Tuesday, March 8, 2011
Saturday, October 30, 2010
Things are good!
It's been some time since I've added to this journal. One reason is that there has not been much to add. But the big reason is there are really no issues.......and that is good.
It's been just over a year since I completed my treatment. Some days it seems like yesterday, but most days it seems like another lifetime. It was a year ago that I was trying to recover, sitting for days in a chair in the bedroom. I just celebrated my birthday yesterday and it was truly wonderful to be another year older. To mark the day, I went to the gym and ran two miles. Couldn't do that six months ago.
I had chest x-rays and a thyroid test to mark the year since treatment ended. Both turned out good. The spot in my chest was there before and the thyroid is not showing any damage from the radiation. So now my visits with the doctors are every two months instead of every six weeks. It's only two weeks difference, but it sure sounds good.
My instructions now are to do a physical exam of my neck.....every day.....for any changes, lumps, or bumps. Liken it to what women are supposed to do every month to get an early detection of breast cancer. The direction to do it 'daily' was surprising. I read that to mean even though things are good, I'm apparently not out of the woods. It's certainly not a problem. I have been very in tune with my body the past 18 months.
I continue to gain strength and I'm in the gym on a regular basis. Many of the things I experienced, things like tingles, numbness, and joint aches, have gradually gone away. I think they were all side effects of the treatment and it simply took a long time to recover, a lot longer that I ever imagined.
I eat whatever I want and most foods taste more or less like they should. I still can't trust my sense of taste. When something tastes bad I have to ask Faith if it really is. I'm maintaining my weight and may have actually gained two or three pounds. My mouth remains dry so I'm never to far from water. I notice it mostly at night and usually need a swallow every couple of hours. I must not completely wake up, because it doesn't seem to result in a lack of rest. My throat is still slightly raw but not really sore. I think it is from the scar tissue. I have one saliva gland that's wacko. It's in my bottom lip and it routinely swells up, then I inadvertenly bite it, then it swells some more. It usually goes down in a day or so just to return the following week. The doctor says if it stays wacko he'll remove it. I'm not there yet.
So, you see.....things are good! Next week is the annual Cowboys Against Cancer banquet. I'm going to share a top ten list. It's "you know you're a cancer survivor when" kind of thing. Maybe I'll post it here later. My next visit with the doctor is the week after Christmas............so I'm good to go for the holidays.
It's been some time since I've added to this journal. One reason is that there has not been much to add. But the big reason is there are really no issues.......and that is good.
It's been just over a year since I completed my treatment. Some days it seems like yesterday, but most days it seems like another lifetime. It was a year ago that I was trying to recover, sitting for days in a chair in the bedroom. I just celebrated my birthday yesterday and it was truly wonderful to be another year older. To mark the day, I went to the gym and ran two miles. Couldn't do that six months ago.
I had chest x-rays and a thyroid test to mark the year since treatment ended. Both turned out good. The spot in my chest was there before and the thyroid is not showing any damage from the radiation. So now my visits with the doctors are every two months instead of every six weeks. It's only two weeks difference, but it sure sounds good.
My instructions now are to do a physical exam of my neck.....every day.....for any changes, lumps, or bumps. Liken it to what women are supposed to do every month to get an early detection of breast cancer. The direction to do it 'daily' was surprising. I read that to mean even though things are good, I'm apparently not out of the woods. It's certainly not a problem. I have been very in tune with my body the past 18 months.
I continue to gain strength and I'm in the gym on a regular basis. Many of the things I experienced, things like tingles, numbness, and joint aches, have gradually gone away. I think they were all side effects of the treatment and it simply took a long time to recover, a lot longer that I ever imagined.
I eat whatever I want and most foods taste more or less like they should. I still can't trust my sense of taste. When something tastes bad I have to ask Faith if it really is. I'm maintaining my weight and may have actually gained two or three pounds. My mouth remains dry so I'm never to far from water. I notice it mostly at night and usually need a swallow every couple of hours. I must not completely wake up, because it doesn't seem to result in a lack of rest. My throat is still slightly raw but not really sore. I think it is from the scar tissue. I have one saliva gland that's wacko. It's in my bottom lip and it routinely swells up, then I inadvertenly bite it, then it swells some more. It usually goes down in a day or so just to return the following week. The doctor says if it stays wacko he'll remove it. I'm not there yet.
So, you see.....things are good! Next week is the annual Cowboys Against Cancer banquet. I'm going to share a top ten list. It's "you know you're a cancer survivor when" kind of thing. Maybe I'll post it here later. My next visit with the doctor is the week after Christmas............so I'm good to go for the holidays.
Friday, July 2, 2010
Bands be gone!
Yesterday I had another CT Scan in Salt Lake City. It was the three month follow up from the scan we had last March.
I did the scan in the morning and met with the doctor in the afternoon. I was ushered into a room where I was first checked out by a young doctor doing her residency. She said Dr. Ying was reviewing my scan and would be in briefly.
As five minutes turned into fifteen, my mind raced through numerous scenarios. Obviously, the scan was not good and it was taking her a long time to work through all the stuff. Then I thought, no, she probably got held up with another patient and she's just running behind. But, no, I've never waited this long before. But if it were not good, surely she would be here by now. Something else must be causing the delay. No, the doctor in residency said she was looking at my scan.....so what's taking so long.
As fifteen minutes turned into thirty, my naturally nervous energy was about to redline. That's when the door opened and she said the scan was good.
Now most people would be relieved and maybe even cheer. But I have learned that the word good is subjective and requires further explanation. I said, " What do you mean by good?" My 'good' was the lump from the previous scan was gone and there were no new reasons for alarm.
She said, "The lump is still there, but it hasn't changed." Then she added, to my relief, "The fact that it hasn't changed in three months means it's not cancer. If it were cancer, it would have grown. We all have lumps!"
She went on to say she was not concerned about it and that we could wait six months for the next scan and next visit (actually, next November). She preceded to examine my neck and throat and concluded by saying I look good.....I look healthy.
Now that's 'good'............because I feel good and my body tells me I'm healthy.
My annual check up is in August. Yes, it will have been a year since I finished by treatment. They'll do a thyroid test and chest xrays along with a look see by the other doctor.
So, in my humble opinion, those still wearing the blue rubber wristbands can replace them with something more stylish. Thank you for your months of visual support. I may not have always mentioned it, but I always saw your wristband, and it was always uplifiting to me. It was a silent showing of support, support that overwhelmed me and was not completely understandable, but most appreciated. It was support that strengthened me and kept me focused. And thanks to everyone who has kept me in their prayers and often expressed concern. You have been the best medicine.
I'm taking my band off today. I'm sure I will feel a little strange without it, but I'm sure I can get use to it. Faith and I will plan a band burying celebration......a ceremonial good riddance. We'll keep you posted.
Yesterday I had another CT Scan in Salt Lake City. It was the three month follow up from the scan we had last March.
I did the scan in the morning and met with the doctor in the afternoon. I was ushered into a room where I was first checked out by a young doctor doing her residency. She said Dr. Ying was reviewing my scan and would be in briefly.
As five minutes turned into fifteen, my mind raced through numerous scenarios. Obviously, the scan was not good and it was taking her a long time to work through all the stuff. Then I thought, no, she probably got held up with another patient and she's just running behind. But, no, I've never waited this long before. But if it were not good, surely she would be here by now. Something else must be causing the delay. No, the doctor in residency said she was looking at my scan.....so what's taking so long.
As fifteen minutes turned into thirty, my naturally nervous energy was about to redline. That's when the door opened and she said the scan was good.
Now most people would be relieved and maybe even cheer. But I have learned that the word good is subjective and requires further explanation. I said, " What do you mean by good?" My 'good' was the lump from the previous scan was gone and there were no new reasons for alarm.
She said, "The lump is still there, but it hasn't changed." Then she added, to my relief, "The fact that it hasn't changed in three months means it's not cancer. If it were cancer, it would have grown. We all have lumps!"
She went on to say she was not concerned about it and that we could wait six months for the next scan and next visit (actually, next November). She preceded to examine my neck and throat and concluded by saying I look good.....I look healthy.
Now that's 'good'............because I feel good and my body tells me I'm healthy.
My annual check up is in August. Yes, it will have been a year since I finished by treatment. They'll do a thyroid test and chest xrays along with a look see by the other doctor.
So, in my humble opinion, those still wearing the blue rubber wristbands can replace them with something more stylish. Thank you for your months of visual support. I may not have always mentioned it, but I always saw your wristband, and it was always uplifiting to me. It was a silent showing of support, support that overwhelmed me and was not completely understandable, but most appreciated. It was support that strengthened me and kept me focused. And thanks to everyone who has kept me in their prayers and often expressed concern. You have been the best medicine.
I'm taking my band off today. I'm sure I will feel a little strange without it, but I'm sure I can get use to it. Faith and I will plan a band burying celebration......a ceremonial good riddance. We'll keep you posted.
Wednesday, April 28, 2010
NO NEWS IS GOOD NEWS
Well, a lot has happened since my last entry, and I've been remiss for not providing an update. I am going to give a detailed report, so if you're pressed for time, scroll to the bottom for the, well, the bottom line.
The tumor board at the Huntsman Center was supposed to meet on Friday, April 2nd, to review my CT scan and make a recommendation concerning the small lump revealed. That was Good Friday and I was disappointed, but not surprised, to learn they did not meet. They meet once a week. I mentally prepared for another week of wonder.
The tumor board did meet on the following Friday, but I didn't get their input until Monday. The group decision was to do a biopsy......find out what is there. The decision made for a mixed emotion day......for both of us....all day. I wasn't excited about another biopsy....that's where we started nearly a year ago. It seemed like a huge step backward. Conversely, I did want to know, and sooner than later. We were out of town and the first mutually agreeable date for the procedure was the following Monday, April 19th. Another week of wonder, but this time it was wondering if this test was going to work. The biopsy last year was inconclusive and we had a large, visible lump to work with. This time the lump was small and not visible. I was concerned about not getting a sample from the right spot and getting a false negative.
We went to the University of Utah Hospital midday Monday. We were led into a high tech room, nothing like the doctor's office where a similar procedure had been done nearly a year earlier. Last year seems like a different life.....it was. That was B. C. ----before cancer.
I laid on a slightly inclined, hard table/bed. A technician used an ultra-sound to look at (in) my neck. She asked if I could feel the lump. No. "Is it small?" Yes. Then I asked my burning question. "How do you know you're getting tissue from this small lump?" She explained the ultra-sound would show the needle and they would watch the monitor to guide the needle tip into the lump. She then explained that they would take a sample, run across the hall and ask the pathologist if they had enough cells, and then do it again if necessary. I asked if that happened often. To my delight, she said it usually takes three sticks and some times as many as seven! While I pondered my plight, she explained how she was going to bring the lump up on the screen and then the doctor would come in to preform the procedure.
She couldn't find it. I said I thought it was higher on my neck. Nothing. Do I dare think it?
The doctor came in from where he'd been studying my CT scan. He looked, but couldn't find it. He went back to the CT scan to make sure he was looking in the right place. I think I held my breath. I know both Faith and I were thinking, hoping, do we dare hope, the same thing. But neither of us, alone now in the room, uttered a word.
He looked again. I must have breathed. Finally he said, "I can't stick what I can't see".
It had been three weeks since the scan. The doctor explained that lymph nodes swell up normally as our bodies first line of defense.....to a lot of bad things. It could be a dog or cat scratch, an allergy, an infection of some sort, etc. Whatever was there then, was gone now.
You don't realize how much this stuff weighs on you until it's lifted. Alone again in the room, Faith and I hugged, cried, said a prayer of thanks to the Lord, and shared our unbelieving emotions of the past fifteen minutes.
It was an incredibly short trip home to Green River. I'm sure I had a smile on my face the entire way because I know I had a heart full of joy.
It's been nine days..........and I haven't been shaken awake and told this was all just a dream. So now I'm sharing it with you. Are we done? No. We see the lead doctor on the team in three weeks and we have another scan five weeks after that. Meanwhile, life is good, life is great, and we continue to heal. I'm starting to think it's time to burn the blue bands. Do I dare think it?
Well, a lot has happened since my last entry, and I've been remiss for not providing an update. I am going to give a detailed report, so if you're pressed for time, scroll to the bottom for the, well, the bottom line.
The tumor board at the Huntsman Center was supposed to meet on Friday, April 2nd, to review my CT scan and make a recommendation concerning the small lump revealed. That was Good Friday and I was disappointed, but not surprised, to learn they did not meet. They meet once a week. I mentally prepared for another week of wonder.
The tumor board did meet on the following Friday, but I didn't get their input until Monday. The group decision was to do a biopsy......find out what is there. The decision made for a mixed emotion day......for both of us....all day. I wasn't excited about another biopsy....that's where we started nearly a year ago. It seemed like a huge step backward. Conversely, I did want to know, and sooner than later. We were out of town and the first mutually agreeable date for the procedure was the following Monday, April 19th. Another week of wonder, but this time it was wondering if this test was going to work. The biopsy last year was inconclusive and we had a large, visible lump to work with. This time the lump was small and not visible. I was concerned about not getting a sample from the right spot and getting a false negative.
We went to the University of Utah Hospital midday Monday. We were led into a high tech room, nothing like the doctor's office where a similar procedure had been done nearly a year earlier. Last year seems like a different life.....it was. That was B. C. ----before cancer.
I laid on a slightly inclined, hard table/bed. A technician used an ultra-sound to look at (in) my neck. She asked if I could feel the lump. No. "Is it small?" Yes. Then I asked my burning question. "How do you know you're getting tissue from this small lump?" She explained the ultra-sound would show the needle and they would watch the monitor to guide the needle tip into the lump. She then explained that they would take a sample, run across the hall and ask the pathologist if they had enough cells, and then do it again if necessary. I asked if that happened often. To my delight, she said it usually takes three sticks and some times as many as seven! While I pondered my plight, she explained how she was going to bring the lump up on the screen and then the doctor would come in to preform the procedure.
She couldn't find it. I said I thought it was higher on my neck. Nothing. Do I dare think it?
The doctor came in from where he'd been studying my CT scan. He looked, but couldn't find it. He went back to the CT scan to make sure he was looking in the right place. I think I held my breath. I know both Faith and I were thinking, hoping, do we dare hope, the same thing. But neither of us, alone now in the room, uttered a word.
He looked again. I must have breathed. Finally he said, "I can't stick what I can't see".
It had been three weeks since the scan. The doctor explained that lymph nodes swell up normally as our bodies first line of defense.....to a lot of bad things. It could be a dog or cat scratch, an allergy, an infection of some sort, etc. Whatever was there then, was gone now.
You don't realize how much this stuff weighs on you until it's lifted. Alone again in the room, Faith and I hugged, cried, said a prayer of thanks to the Lord, and shared our unbelieving emotions of the past fifteen minutes.
It was an incredibly short trip home to Green River. I'm sure I had a smile on my face the entire way because I know I had a heart full of joy.
It's been nine days..........and I haven't been shaken awake and told this was all just a dream. So now I'm sharing it with you. Are we done? No. We see the lead doctor on the team in three weeks and we have another scan five weeks after that. Meanwhile, life is good, life is great, and we continue to heal. I'm starting to think it's time to burn the blue bands. Do I dare think it?
Thursday, April 1, 2010
Update --
Just a short post to bring you up to date. I am feeling fine and doing better. My saliva is better and things taste better, just not right. I have no real complaints. My throat is still a little raw and I'm sure the dry air doesn't help.
I had a CT Scan on Monday and met with the radiation oncologist, Dr. Ying, on Tuesday. The report was good, for the most part. She examined my neck, inside and out, and said it looked good. The raw throat is to be expected....it takes a long time to heal. The tingling in my legs is a not-so-common side effect of the neck radiation, but should be temporary. The scan showed nothing in my lungs, which is a common place for neck cancers to go. There was one node on the left side of my neck that was slightly enlarged. That's the part I really didn't want to hear. Everything else looked good.
The Scan cannot tell us why the node is enlarged, only that it is. We have three choices the way I understand it. We can wait and watch
, we can do a biopsy, or we can remove it. Dr. Ying is taking all the information to what they call the "Tumor Board" on Friday and then she is supposed to have a recommendation for me. My guess is that they will say 'wait and watch'.
I think I'm okay with that. The node is so small, I'm not confident a biopsy attempt would reach the right spot. Besides, a year ago when I first had a biopsy to find out what the original lump was, it came back inconclusive. And before surgery, I think a Pet Scan is in order to see if this lump is 'hot'. That's the term they use when they find an area of rapidly growing cells, indicative of cancer. The Pet Scan that I had three months ago did not show a hot spot with this node.
I did experience some allergy symptoms last week in Las Vegas and that could be what's causing the node enlargement. I hope that's not wishful thinking.
Regardless, I meet with the surgical oncologist is six weeks (a routine visit) and will have another CT Scan the end of June.
Next: Docs recommendation
Just a short post to bring you up to date. I am feeling fine and doing better. My saliva is better and things taste better, just not right. I have no real complaints. My throat is still a little raw and I'm sure the dry air doesn't help.
I had a CT Scan on Monday and met with the radiation oncologist, Dr. Ying, on Tuesday. The report was good, for the most part. She examined my neck, inside and out, and said it looked good. The raw throat is to be expected....it takes a long time to heal. The tingling in my legs is a not-so-common side effect of the neck radiation, but should be temporary. The scan showed nothing in my lungs, which is a common place for neck cancers to go. There was one node on the left side of my neck that was slightly enlarged. That's the part I really didn't want to hear. Everything else looked good.
The Scan cannot tell us why the node is enlarged, only that it is. We have three choices the way I understand it. We can wait and watch
, we can do a biopsy, or we can remove it. Dr. Ying is taking all the information to what they call the "Tumor Board" on Friday and then she is supposed to have a recommendation for me. My guess is that they will say 'wait and watch'.
I think I'm okay with that. The node is so small, I'm not confident a biopsy attempt would reach the right spot. Besides, a year ago when I first had a biopsy to find out what the original lump was, it came back inconclusive. And before surgery, I think a Pet Scan is in order to see if this lump is 'hot'. That's the term they use when they find an area of rapidly growing cells, indicative of cancer. The Pet Scan that I had three months ago did not show a hot spot with this node.
I did experience some allergy symptoms last week in Las Vegas and that could be what's causing the node enlargement. I hope that's not wishful thinking.
Regardless, I meet with the surgical oncologist is six weeks (a routine visit) and will have another CT Scan the end of June.
Next: Docs recommendation
Sunday, January 31, 2010
Going it Alone --
I've been meaning to address "aloneness" for months and every time I got close, some more timely topic would squeeze it out. Finally, here goes.
There's two sides to this topic. First, let me acknowledge that I have never been so un-alone in all my life. My family has been with me every step like I've never experienced before. Friends of a social relationship became foundational support. Community members, unnumbered, held me up in their thoughts and prayers. Never a day did I fight this battle alone. I was never alone physically or emotionally.
What I mean by "aloneness" is the decision challenges, of which there are many. Critical decisions have to be made from day one. And the early decisions have huge impacts down the road.
When we first met with the surgical oncologist (the lead physician of our medical team), he told us that there would be a cadre of people involved with my cancer treatment, but he also said I would be the head of the team......that I would call the shots. (It should be noted in looking back, several critical decisions had already been made that set the course of this journey.) My non-verbal reaction to "You will call the shots" was sure! I know the hospital routine. They tell you what to do, when to do it, and how often to do it. They talk about patients' rights, but often it feels like your rights are checked at the door.
So I was told, I heard, I was unconvinced, and I was wrong. Unlike any medical issue I have been associated with, when it comes to cancer you make the decisions. Maybe it's because of the complexity.....a myriad of cancers and even more variations of treatment....maybe it's the lack of overwhelming success....maybe it's because nobody knows enough to tell you....your guess is better than mine. Regardless, the bottom line is the cancer patient calls the shots!
Surgery or no surgery? In my case, that one was easy, so easy it didn't seem like a decision....it was that obvious. Feeding tube or no feeding tube? That was entirely our call! We were given all kinds of information, but not so much as a recommendation one way or the other. Faith and I (mostly Faith) made the decision, not so much a medical decision, but a decision based on our oft used decision-making model. We weighed the upside potential against the downside risks. Right up to the day before it was put in, I wasn't sure. That day I called a tonsil cancer patient I had never met to seek her advice. The decision was affirmed and we later knew it was the right decision. Without the tube, I would surely have been hospitalized.
The decision to remove the tube was entirely ours. In fact, we made the decision, made the appointment, and had no doctor approval......or were we asked for one. In earlier discussions it had been made clear it was up to us.
I had lots of medicines prescribed to combat sickness from chemo. It as up to me to decide which to take and when to take them.
Decisions on food, eating, exercise, and overall physical health were made by us. How to care for burned skin, dry mouth, and sore throat were left to us....mostly by trial and error.
The doctor was correct....I made the decisions. Consequently, it is so important to read as much as you can, discern what is accurate, and act accordingly. No one suggested I seek a physical trainer. I would recommend that to anyone. No one told me when to go back to work. I would suggest later than you think.
There an more examples, but the message is the same. In the cancer world, you call more shots than expected. Arm yourself with all the information available. It's a lonesome road, even though there may be lots of support. But only you can make the call. The buck stops with the patient.
Knowing now what I didn't know then leads me to wonder what I NEED to know NOW that I don't. I do know that my future well-being depends on the decisions I make today. And I know that I'm expected to make the call.
I hope this helps others. It was hard for me to comprehend and harder to explain. So despite the tremendous support I've received, there's a solo, lonesome path through the landmines of cancer treatment.
I've been meaning to address "aloneness" for months and every time I got close, some more timely topic would squeeze it out. Finally, here goes.
There's two sides to this topic. First, let me acknowledge that I have never been so un-alone in all my life. My family has been with me every step like I've never experienced before. Friends of a social relationship became foundational support. Community members, unnumbered, held me up in their thoughts and prayers. Never a day did I fight this battle alone. I was never alone physically or emotionally.
What I mean by "aloneness" is the decision challenges, of which there are many. Critical decisions have to be made from day one. And the early decisions have huge impacts down the road.
When we first met with the surgical oncologist (the lead physician of our medical team), he told us that there would be a cadre of people involved with my cancer treatment, but he also said I would be the head of the team......that I would call the shots. (It should be noted in looking back, several critical decisions had already been made that set the course of this journey.) My non-verbal reaction to "You will call the shots" was sure! I know the hospital routine. They tell you what to do, when to do it, and how often to do it. They talk about patients' rights, but often it feels like your rights are checked at the door.
So I was told, I heard, I was unconvinced, and I was wrong. Unlike any medical issue I have been associated with, when it comes to cancer you make the decisions. Maybe it's because of the complexity.....a myriad of cancers and even more variations of treatment....maybe it's the lack of overwhelming success....maybe it's because nobody knows enough to tell you....your guess is better than mine. Regardless, the bottom line is the cancer patient calls the shots!
Surgery or no surgery? In my case, that one was easy, so easy it didn't seem like a decision....it was that obvious. Feeding tube or no feeding tube? That was entirely our call! We were given all kinds of information, but not so much as a recommendation one way or the other. Faith and I (mostly Faith) made the decision, not so much a medical decision, but a decision based on our oft used decision-making model. We weighed the upside potential against the downside risks. Right up to the day before it was put in, I wasn't sure. That day I called a tonsil cancer patient I had never met to seek her advice. The decision was affirmed and we later knew it was the right decision. Without the tube, I would surely have been hospitalized.
The decision to remove the tube was entirely ours. In fact, we made the decision, made the appointment, and had no doctor approval......or were we asked for one. In earlier discussions it had been made clear it was up to us.
I had lots of medicines prescribed to combat sickness from chemo. It as up to me to decide which to take and when to take them.
Decisions on food, eating, exercise, and overall physical health were made by us. How to care for burned skin, dry mouth, and sore throat were left to us....mostly by trial and error.
The doctor was correct....I made the decisions. Consequently, it is so important to read as much as you can, discern what is accurate, and act accordingly. No one suggested I seek a physical trainer. I would recommend that to anyone. No one told me when to go back to work. I would suggest later than you think.
There an more examples, but the message is the same. In the cancer world, you call more shots than expected. Arm yourself with all the information available. It's a lonesome road, even though there may be lots of support. But only you can make the call. The buck stops with the patient.
Knowing now what I didn't know then leads me to wonder what I NEED to know NOW that I don't. I do know that my future well-being depends on the decisions I make today. And I know that I'm expected to make the call.
I hope this helps others. It was hard for me to comprehend and harder to explain. So despite the tremendous support I've received, there's a solo, lonesome path through the landmines of cancer treatment.
Wednesday, January 20, 2010
Update --
It's been some time since I've made an entry, but the good news is there's not much new. We continue to heal slowly, watch our progress, and pray for the best.
We met with the radiation oncologist just before Christmas to go over the results of the first follow-up PET scan. This doctor echoed the first in saying the results were good, but this doctor was considerably more conservative. She was guardedly optimistic.....not ready to get excited, but content to be positive. It was actually an emotional let down from what we had experienced with the lead doctor of the team.
The reality is, radiation was the major player in my treatment, and I think the radiation doctor was feeling more pressure for the end results. She said it's good, but she's not ready to say anymore. I have a CT scan the end of March. Until then, we wait. Meanwhile, Christmas was a joyful celebration in lots of wonderful ways.
My neck and throat are still sore and occasionally I lose my voice. Not good in my line of work. The doctor said the throat is still red, healing fine, with still a ways to go.
I've maintained weight, which means I'm still down about 25 pounds. I began working with a personal trainer in late November. It was the same one Faith has worked with for nearly two years. She knows her stuff. No one told us to to this, or even to start exercising, but it's been the right move. I had very little strength, but she assures me I'm getting stronger. Why the exercise? I know a lot of cancer patients have to endure more than one round of treatments. Should I need to go through this again, I need all the strength I can muster. Fear is a tremendous motivator.
I start each day with a 700 calorie shake and try to eat often enough to compensate for not eating much at any given time. Food is okay.....not bad....but not really good. It's certainly not what I remember.
I developed some numbness, tingling, and muscle shocks that we think are side effects of chemo. It began with my fingers losing circulation and going numb, like the numbness you get from being out in the cold.
Next, I began to experience electric-like shocks in my thighs during my workouts. It feels like the electrical shock treatment doctors use to stimulate muscles. I've had these shock episodes last up to 90 minutes.
And lately, my legs tingle from just below my knees to my feet. They don't go numb, they just tingle like your foot's asleep.
And lastly, I've definitely had some hearing loss....maybe more than just some. I made an appointment with an audiologist, but was told by the radiation doctor to wait. She said it's still too early to know if it's permanent hearing loss. In the meantime, I just say "huh" a lot, cup my ear, or nod when I don't have clue what you have just said.
Now, having said all that, I'm doing great! I'm active, I'm at work, I do anything and everything I want, I feel good, I'm trim, and I'm building strength. I'm excited by the progress and only need an occasional reminder that slow progress is to be expected. Faith is very good at providing that timely little reminder.
I shared all this other stuff only so others might understand, and that those going through anything similar might know what they could encounter. It in no way reflects my overall wellness. I'm ecstatic to be where I am!
I still need to share the aloneness part of this journey, but that's for another day.
Thank you, all of you, for your love, prayers, and support.
It's been some time since I've made an entry, but the good news is there's not much new. We continue to heal slowly, watch our progress, and pray for the best.
We met with the radiation oncologist just before Christmas to go over the results of the first follow-up PET scan. This doctor echoed the first in saying the results were good, but this doctor was considerably more conservative. She was guardedly optimistic.....not ready to get excited, but content to be positive. It was actually an emotional let down from what we had experienced with the lead doctor of the team.
The reality is, radiation was the major player in my treatment, and I think the radiation doctor was feeling more pressure for the end results. She said it's good, but she's not ready to say anymore. I have a CT scan the end of March. Until then, we wait. Meanwhile, Christmas was a joyful celebration in lots of wonderful ways.
My neck and throat are still sore and occasionally I lose my voice. Not good in my line of work. The doctor said the throat is still red, healing fine, with still a ways to go.
I've maintained weight, which means I'm still down about 25 pounds. I began working with a personal trainer in late November. It was the same one Faith has worked with for nearly two years. She knows her stuff. No one told us to to this, or even to start exercising, but it's been the right move. I had very little strength, but she assures me I'm getting stronger. Why the exercise? I know a lot of cancer patients have to endure more than one round of treatments. Should I need to go through this again, I need all the strength I can muster. Fear is a tremendous motivator.
I start each day with a 700 calorie shake and try to eat often enough to compensate for not eating much at any given time. Food is okay.....not bad....but not really good. It's certainly not what I remember.
I developed some numbness, tingling, and muscle shocks that we think are side effects of chemo. It began with my fingers losing circulation and going numb, like the numbness you get from being out in the cold.
Next, I began to experience electric-like shocks in my thighs during my workouts. It feels like the electrical shock treatment doctors use to stimulate muscles. I've had these shock episodes last up to 90 minutes.
And lately, my legs tingle from just below my knees to my feet. They don't go numb, they just tingle like your foot's asleep.
And lastly, I've definitely had some hearing loss....maybe more than just some. I made an appointment with an audiologist, but was told by the radiation doctor to wait. She said it's still too early to know if it's permanent hearing loss. In the meantime, I just say "huh" a lot, cup my ear, or nod when I don't have clue what you have just said.
Now, having said all that, I'm doing great! I'm active, I'm at work, I do anything and everything I want, I feel good, I'm trim, and I'm building strength. I'm excited by the progress and only need an occasional reminder that slow progress is to be expected. Faith is very good at providing that timely little reminder.
I shared all this other stuff only so others might understand, and that those going through anything similar might know what they could encounter. It in no way reflects my overall wellness. I'm ecstatic to be where I am!
I still need to share the aloneness part of this journey, but that's for another day.
Thank you, all of you, for your love, prayers, and support.
Thursday, November 26, 2009
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
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
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.
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