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.
Monday, August 31, 2009
Wednesday, August 26, 2009
Mixed Emotions -
I've finished my treatments and we're home! The last one was a real challenge, but we made it.
I know I should be elated, but I'm not. Oh, I'm delighted they're over, but it is not fulfilling. When you run the race, finish the race, cross the tape, and not know who won, it's a little hollow. All during the race (the treatments) you could see the benchmarks, track your movement, monitor your efforts. Now all the benchmarks are gone. And apparently the results are weeks, if not months, away.
What we have learned is that radiation continues to do its thing several days after the last exposure. We've also learned it'll be two to four weeks to heal from these treatments. Not really the kind of reward one would expect for completing the gauntlet.
It's been ten days since the last chemo, so I think most of that is out of my body. What I'm feeling now I call radiation sickness. No one else has called it that, it's just what I call it. I still need to take my anti nausea meds. Whatever it is, I'm ready for it to leave.
We see the doctors again in two weeks. Our goal is to be well over the hump by that time and feeling much better. The most immediate challenge is to eat again and we're going to attempt that later today. I know it doesn't sound like much of a challenge, but just not knowing if you can, is a bit daunting. I've been warned if I don't soon swallow, I might not be able, and we haven't really eaten for several weeks. Here's to real food.
I've finished my treatments and we're home! The last one was a real challenge, but we made it.
I know I should be elated, but I'm not. Oh, I'm delighted they're over, but it is not fulfilling. When you run the race, finish the race, cross the tape, and not know who won, it's a little hollow. All during the race (the treatments) you could see the benchmarks, track your movement, monitor your efforts. Now all the benchmarks are gone. And apparently the results are weeks, if not months, away.
What we have learned is that radiation continues to do its thing several days after the last exposure. We've also learned it'll be two to four weeks to heal from these treatments. Not really the kind of reward one would expect for completing the gauntlet.
It's been ten days since the last chemo, so I think most of that is out of my body. What I'm feeling now I call radiation sickness. No one else has called it that, it's just what I call it. I still need to take my anti nausea meds. Whatever it is, I'm ready for it to leave.
We see the doctors again in two weeks. Our goal is to be well over the hump by that time and feeling much better. The most immediate challenge is to eat again and we're going to attempt that later today. I know it doesn't sound like much of a challenge, but just not knowing if you can, is a bit daunting. I've been warned if I don't soon swallow, I might not be able, and we haven't really eaten for several weeks. Here's to real food.
Saturday, August 22, 2009
Feeling Better -
Some have asked and I'm sure many have guessed, and you are all correct......the past few days have been a little rough. I'm taking more pills than I've ever seen, but they seem to be working. They kept my nausea under control all week which means this week was better than last.....I think.
It's getting difficult to talk (no comments necessary) and the radiation on my neck is suddenly taking a toll. It's burned, blistered, peeling, and turning black. But just one more zap attack and then we go into full tilt healing mode. I'm hoping we can turn the corner in a couple of weeks.
People continue to amaze us. Last week while I was in the lead-lined radiation room, Faith was working a puzzle in the lobby. A woman wearing the telltale badge of a cancer fighter, the colorful scarf covering a smooth head coordinated with an equally colorful blouse, was speaking with the staff. She was having to start treatments all over again and was obviously distraught. Apparently her breast cancer was more aggressive than the doctors had originally thought.
On the way out of the Radiation Center, the same lady was standing curbside, apparently awaiting a ride. Faith was just starting to explain her plight to me as we passed. That's when the woman looked up and said to Faith, "You have a beautiful smile."
Faith cried all the way home. Okay, so we both cried.
Some have asked and I'm sure many have guessed, and you are all correct......the past few days have been a little rough. I'm taking more pills than I've ever seen, but they seem to be working. They kept my nausea under control all week which means this week was better than last.....I think.
It's getting difficult to talk (no comments necessary) and the radiation on my neck is suddenly taking a toll. It's burned, blistered, peeling, and turning black. But just one more zap attack and then we go into full tilt healing mode. I'm hoping we can turn the corner in a couple of weeks.
People continue to amaze us. Last week while I was in the lead-lined radiation room, Faith was working a puzzle in the lobby. A woman wearing the telltale badge of a cancer fighter, the colorful scarf covering a smooth head coordinated with an equally colorful blouse, was speaking with the staff. She was having to start treatments all over again and was obviously distraught. Apparently her breast cancer was more aggressive than the doctors had originally thought.
On the way out of the Radiation Center, the same lady was standing curbside, apparently awaiting a ride. Faith was just starting to explain her plight to me as we passed. That's when the woman looked up and said to Faith, "You have a beautiful smile."
Faith cried all the way home. Okay, so we both cried.
Wednesday, August 19, 2009
Dancin' and Bands -
Today we see if the new drugs are going to help. Wednesday is the typical get sick day, so......
Actually, it's time to reveal the title for this blog. From the start it seemed right, and it still feels like a good fit, but let me explain.
One of the first cards I got came from Bill and Gayle Robinson. We know Bill and Gayle mostly through our radio show and running into them at the restaurant. They also caught me by surprise at one of my early screening visits to the Huntsman Center. The meeting was purely by chance, but I digress.
The card was lovely, but what they wrote has become my motto for moving forward, my outlook on life, my motivation to do when not feeling like doing. I don't know who to credit for first saying it, but nevertheless, here it is.
Life is not waiting for the storm to pass,
But learning to dance in the rain.
It's what we've been doing since June 10th......our rain dance day. We find ways to dance in the rain. This blog has been one of those dances, hence the title, Dancin' in the Rain.
Now the blue bands have nothing to do with music or dancing. The Huntsman Center sells blue wrist bands, not unlike the yellow bands that support the Lance Armstrong Foundation. The proceeds from these blue bands support cancer research at the Huntsman. They are engraved with "A Reason to Hope".
Faith decided to bring a bunch of these blue bands home and ask people to wear them to show support and hope for my cancer fight. Well, there are now blue bands everywhere. Twenty became fifty that quickly turned into a hundred. I think at last count, she's bought two hundred blue wrist bands. The Huntsman center knows her well.......she's the woman who, by far, has bought the most bands ever. And yes, they mean a bundle to me. So if you see someone with a fat, blue rubber band on their wrist, you now know why.
Next - I don't have a clue
Today we see if the new drugs are going to help. Wednesday is the typical get sick day, so......
Actually, it's time to reveal the title for this blog. From the start it seemed right, and it still feels like a good fit, but let me explain.
One of the first cards I got came from Bill and Gayle Robinson. We know Bill and Gayle mostly through our radio show and running into them at the restaurant. They also caught me by surprise at one of my early screening visits to the Huntsman Center. The meeting was purely by chance, but I digress.
The card was lovely, but what they wrote has become my motto for moving forward, my outlook on life, my motivation to do when not feeling like doing. I don't know who to credit for first saying it, but nevertheless, here it is.
Life is not waiting for the storm to pass,
But learning to dance in the rain.
It's what we've been doing since June 10th......our rain dance day. We find ways to dance in the rain. This blog has been one of those dances, hence the title, Dancin' in the Rain.
Now the blue bands have nothing to do with music or dancing. The Huntsman Center sells blue wrist bands, not unlike the yellow bands that support the Lance Armstrong Foundation. The proceeds from these blue bands support cancer research at the Huntsman. They are engraved with "A Reason to Hope".
Faith decided to bring a bunch of these blue bands home and ask people to wear them to show support and hope for my cancer fight. Well, there are now blue bands everywhere. Twenty became fifty that quickly turned into a hundred. I think at last count, she's bought two hundred blue wrist bands. The Huntsman center knows her well.......she's the woman who, by far, has bought the most bands ever. And yes, they mean a bundle to me. So if you see someone with a fat, blue rubber band on their wrist, you now know why.
Next - I don't have a clue
Tuesday, August 18, 2009
The Other Side of the Fence -
I've never been on this side of the fence before. That is to say, I've never been the one with the life threatening illness or injury. It's been an eye opener and one I'd like to share. Specifically, I'd like to share two lessons.
First, the importance of a card. The importance of a greeting card, email, phone call, basket, letter, or visit cannot be overstated. I can now personally tell you it's substantially bigger than huge. The knowledge that someone would use their own limited supply of time to find a card, contemplate what to write, seek out an address and mail it to me takes me to my knees. It is such a powerful act, such a statement of caring! To all of you, I can only say thank you, because I don't know a way to pay back what you've given me. It's much needed strength and hope when the body and spirit are being robbed of both and in sore need of resupply. I've received baskets, books, group cards, personally compiled music cd's, stuffed animals, plaques with inspirational words, cards, and offers of helping hands. THANK YOU!
Let me share how I read a card. Please, take no offense, because I know a lot of thought, effort, and time goes into choosing the card and deciding what to write. But I start at the bottom and read who it's from. At that point, whatever words are in the card are drowned out by the roar of the action taken by that person. All I hear is this person cared and I sit in bewilderment and wonderment. Then I read what they write, and don't worry, it's always right. And then, through blurry, tear-filled eyes, I read the prewritten message. The power of the card.....oh, my.......or a phone call or a quick email!
And what you say is really secondary to what you've done. I've had people say, "If there's anything we can do, let us know". By that time, they've already done it. They told me they cared....and after that, what more is there to be done?
Second, the shame lesson. The second lesson is shame on me. Shame, shame, shame....for having so many opportunities to tell someone I cared and not doing it. All those times when I rationalized my way out of action with 'I don't know what to say, I don't know what hospital they're in, I don't have an address, I don't have time', or whatever other lame excuse I let get in the way. Thanks to cancer and thanks to all of you, I now understand.
And as the first step in my penance, I'm sending a card to Howard Logan. Howard has been told his cancer is terminal and he has no hope. I'm going to tell him I'm praying for a miracle. Maybe you could send a card, too. His address is 580 Lombard, Green River, WY 82935.
Next - Blue Bands and Rain Dancin'
I've never been on this side of the fence before. That is to say, I've never been the one with the life threatening illness or injury. It's been an eye opener and one I'd like to share. Specifically, I'd like to share two lessons.
First, the importance of a card. The importance of a greeting card, email, phone call, basket, letter, or visit cannot be overstated. I can now personally tell you it's substantially bigger than huge. The knowledge that someone would use their own limited supply of time to find a card, contemplate what to write, seek out an address and mail it to me takes me to my knees. It is such a powerful act, such a statement of caring! To all of you, I can only say thank you, because I don't know a way to pay back what you've given me. It's much needed strength and hope when the body and spirit are being robbed of both and in sore need of resupply. I've received baskets, books, group cards, personally compiled music cd's, stuffed animals, plaques with inspirational words, cards, and offers of helping hands. THANK YOU!
Let me share how I read a card. Please, take no offense, because I know a lot of thought, effort, and time goes into choosing the card and deciding what to write. But I start at the bottom and read who it's from. At that point, whatever words are in the card are drowned out by the roar of the action taken by that person. All I hear is this person cared and I sit in bewilderment and wonderment. Then I read what they write, and don't worry, it's always right. And then, through blurry, tear-filled eyes, I read the prewritten message. The power of the card.....oh, my.......or a phone call or a quick email!
And what you say is really secondary to what you've done. I've had people say, "If there's anything we can do, let us know". By that time, they've already done it. They told me they cared....and after that, what more is there to be done?
Second, the shame lesson. The second lesson is shame on me. Shame, shame, shame....for having so many opportunities to tell someone I cared and not doing it. All those times when I rationalized my way out of action with 'I don't know what to say, I don't know what hospital they're in, I don't have an address, I don't have time', or whatever other lame excuse I let get in the way. Thanks to cancer and thanks to all of you, I now understand.
And as the first step in my penance, I'm sending a card to Howard Logan. Howard has been told his cancer is terminal and he has no hope. I'm going to tell him I'm praying for a miracle. Maybe you could send a card, too. His address is 580 Lombard, Green River, WY 82935.
Next - Blue Bands and Rain Dancin'
Monday, August 17, 2009
Radiation, but first an update -
We (Faith and I) are back in Salt Lake and this is the best I've felt since last Wednesday, just in time for another juice break. Today I get three new prescriptions for anti nausea medicine, plus I keep all the old ones. This stuff is crazy. Typically I've been told you shouldn't mix medications. Not here. Take this and if it doesn't work, take this one thirty minutes later! Stay with what you're doing and add these three pills on top of everything else. So far no marijuana or opium, but I did get a steroid. Guess I'll have to sit out the first few NFL games this year. About Wednesday we'll find out if any of these concoctions work.
But there is jubilation in Mudville. Today was the last chemo treatment and to mark the occasion, all the nurses and even some of the patients joined in song to send me off. I told you this juice bar is a very social gathering. There were plenty of hugs and even a going away gift......a blanket from the infusion room. I was most grateful and told all the nurses I meant no disrespect, but hoped I'd never see them again.
Whereas chemo is a social event, radiations is a solo event. There's one machine, one lead lined room, and one board to strap you on. The door to the room is about five inches thick........lead.....must weigh a thousand pounds.
In my case I wear a perforated mask (I hope to have a picture of it here soon) that is snapped tightly to the board so I can't move. I tried to open my eyes once, but that was a mistake. The mask was so tight I couldn't get them closed again. To be sure I'm lined up the same way each time, they gave me a tattoo on my chest the first day, and that's the reference point. So now I have something in common with all three of my kids, but I'm still not inclined to get any body art voluntarily. That now leaves Faith pondering if there is a tattoo in her future.
My radiation is tougher than most because of the cancer location and the side affects of the treatment, but I'm assured it's no tougher than anyone else with a similar diagnosis. I'm under the gun about eight minutes. I feel nothing at the time......but it's like too many trips to the tanning bed. I'm starting to burn, inside and out. I compare it to a giant microwave oven. They seem to cook from the inside out. Well, I'm in the oven, and I get eight minutes at the defrost level everyday. My neck is getting red and starting to show some blistering, but inside........oh my! The doctor called it "a bad ass sunburn". Maybe I could be a football cheerleader......I know Raw, Raw, Raw.
Again, we are on the downhill side..........only five more to go.
And now I've got to tell you about my Angel. Faith has been beyond awesome. She makes sure I'm on the right meds at the right time, she keeps me fed (only down eight pounds as of today), takes care of the radio stations on the weekends, and still manages to clean and do all the laundry. She literally works constantly from Friday afternoon until Sunday night. I know she's beat, but she is always upbeat, full of encouragement, and never a complaint. I can't explain how wonderful this woman is........and tough. Just a word of advice. Don't mess with her, and believe me, I'm following my own advice.
Next - What I've learned from being on the other side.
We (Faith and I) are back in Salt Lake and this is the best I've felt since last Wednesday, just in time for another juice break. Today I get three new prescriptions for anti nausea medicine, plus I keep all the old ones. This stuff is crazy. Typically I've been told you shouldn't mix medications. Not here. Take this and if it doesn't work, take this one thirty minutes later! Stay with what you're doing and add these three pills on top of everything else. So far no marijuana or opium, but I did get a steroid. Guess I'll have to sit out the first few NFL games this year. About Wednesday we'll find out if any of these concoctions work.
But there is jubilation in Mudville. Today was the last chemo treatment and to mark the occasion, all the nurses and even some of the patients joined in song to send me off. I told you this juice bar is a very social gathering. There were plenty of hugs and even a going away gift......a blanket from the infusion room. I was most grateful and told all the nurses I meant no disrespect, but hoped I'd never see them again.
Whereas chemo is a social event, radiations is a solo event. There's one machine, one lead lined room, and one board to strap you on. The door to the room is about five inches thick........lead.....must weigh a thousand pounds.
In my case I wear a perforated mask (I hope to have a picture of it here soon) that is snapped tightly to the board so I can't move. I tried to open my eyes once, but that was a mistake. The mask was so tight I couldn't get them closed again. To be sure I'm lined up the same way each time, they gave me a tattoo on my chest the first day, and that's the reference point. So now I have something in common with all three of my kids, but I'm still not inclined to get any body art voluntarily. That now leaves Faith pondering if there is a tattoo in her future.
My radiation is tougher than most because of the cancer location and the side affects of the treatment, but I'm assured it's no tougher than anyone else with a similar diagnosis. I'm under the gun about eight minutes. I feel nothing at the time......but it's like too many trips to the tanning bed. I'm starting to burn, inside and out. I compare it to a giant microwave oven. They seem to cook from the inside out. Well, I'm in the oven, and I get eight minutes at the defrost level everyday. My neck is getting red and starting to show some blistering, but inside........oh my! The doctor called it "a bad ass sunburn". Maybe I could be a football cheerleader......I know Raw, Raw, Raw.
Again, we are on the downhill side..........only five more to go.
And now I've got to tell you about my Angel. Faith has been beyond awesome. She makes sure I'm on the right meds at the right time, she keeps me fed (only down eight pounds as of today), takes care of the radio stations on the weekends, and still manages to clean and do all the laundry. She literally works constantly from Friday afternoon until Sunday night. I know she's beat, but she is always upbeat, full of encouragement, and never a complaint. I can't explain how wonderful this woman is........and tough. Just a word of advice. Don't mess with her, and believe me, I'm following my own advice.
Next - What I've learned from being on the other side.
Saturday, August 15, 2009
I Would Have Made You Proud??????? -
I've ignored the blog for a few days because I just didn't feel up to writing anything. It was a tough week, just when I was hoping it wouldn't get any tougher.
Faith and I met with the head and neck cancer specialist on Wednesday. He was very upbeat about our progress and had lots of positive things to say about where our treatment is going. But he also said this appointment was mostly a pep talk to get me through the rest of the regiment. He emphasized how important it was not to miss any scheduled treatments and how it would get tough from here out. That was about 2 pm and I'm starting to think this guy is a clairvoyant.
By 4 pm I was on all fours in my in-laws back yard changing their beautiful lush green grass into a chunky tan color. Where's that doctor that said I wouldn't throw up?
That action continued into the evening and resumed the next morning. I did manage to get through a radiation treatment without redecorating the zap room, but it was a struggle. I saw a doctor following radiation and she decided I was dehydrated and lacking nutrition and that's what was causing my upset stomach. She suggested I be admitted for 24 to 48 hours to get my body "tuned up".
We went to the Huntsman Center for that, where a great nurse, Diane, took great care of me. They gave me two liters of sugar water to hydrate me and did some blood work to see what shape I was really in. The decision was not to admit me, I was a little low, but the hydration should work and I would be good to go. Again, the theory was the dehydration was causing my upset stomach.
Now the good part. After two hours of fluids through an IV, they say I can go. I walk out the front door of the Huntsman Center and before stepping off the curb, began to hurl. Most of it goes into a curbside garbage receptacle, but I'm sure it was a spectacle to witness......not that I was paying any attention.
I turned around, walked back inside and said that didn't work. Another call to the doctor who said I wouldn't vomit and he reports back to the nurse......"I think it's the chemo." Well, well, at least we are all back on the same page. I think I remember saying that two weeks ago in this blog.
With a flurry of medicines (it seems like they come continually) I been holding my own since Thursday afternoon. They keep telling me marijuana or opium is next and I keep telling them I don't have either. My last chemo is Monday and there will be a different anti nausea drug during the infusion. I really don't care what it is, just so it works better this time.
I did manage another radiation treatment Friday before coming home.
So here's the box score. Six chemos.......five down......one to go.
Thirty rads.......24 down.......six to go.
And so far we haven't missed a one!
And eating through a feeding tube does have some advantages. No dishes to wash, no meals to prepare, you eat in front of the TV, and it only takes a minute.
Next.......who knows? -
I've ignored the blog for a few days because I just didn't feel up to writing anything. It was a tough week, just when I was hoping it wouldn't get any tougher.
Faith and I met with the head and neck cancer specialist on Wednesday. He was very upbeat about our progress and had lots of positive things to say about where our treatment is going. But he also said this appointment was mostly a pep talk to get me through the rest of the regiment. He emphasized how important it was not to miss any scheduled treatments and how it would get tough from here out. That was about 2 pm and I'm starting to think this guy is a clairvoyant.
By 4 pm I was on all fours in my in-laws back yard changing their beautiful lush green grass into a chunky tan color. Where's that doctor that said I wouldn't throw up?
That action continued into the evening and resumed the next morning. I did manage to get through a radiation treatment without redecorating the zap room, but it was a struggle. I saw a doctor following radiation and she decided I was dehydrated and lacking nutrition and that's what was causing my upset stomach. She suggested I be admitted for 24 to 48 hours to get my body "tuned up".
We went to the Huntsman Center for that, where a great nurse, Diane, took great care of me. They gave me two liters of sugar water to hydrate me and did some blood work to see what shape I was really in. The decision was not to admit me, I was a little low, but the hydration should work and I would be good to go. Again, the theory was the dehydration was causing my upset stomach.
Now the good part. After two hours of fluids through an IV, they say I can go. I walk out the front door of the Huntsman Center and before stepping off the curb, began to hurl. Most of it goes into a curbside garbage receptacle, but I'm sure it was a spectacle to witness......not that I was paying any attention.
I turned around, walked back inside and said that didn't work. Another call to the doctor who said I wouldn't vomit and he reports back to the nurse......"I think it's the chemo." Well, well, at least we are all back on the same page. I think I remember saying that two weeks ago in this blog.
With a flurry of medicines (it seems like they come continually) I been holding my own since Thursday afternoon. They keep telling me marijuana or opium is next and I keep telling them I don't have either. My last chemo is Monday and there will be a different anti nausea drug during the infusion. I really don't care what it is, just so it works better this time.
I did manage another radiation treatment Friday before coming home.
So here's the box score. Six chemos.......five down......one to go.
Thirty rads.......24 down.......six to go.
And so far we haven't missed a one!
And eating through a feeding tube does have some advantages. No dishes to wash, no meals to prepare, you eat in front of the TV, and it only takes a minute.
Next.......who knows? -
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