The Beauty and the Beach
Superstitious? Check. March 16, 2014
Friends and family,
Wow, did I miss the target! Two weeks ago I wrote and told you that my next scan would be in a couple of months. A week later I looked at my work schedule and saw the CT scan scheduled... two days away! Where did those other two months go???
Did this mean that I was taking for granted the time that I have? Am I not appreciating each day enough? Or maybe it's a good sign that I'm staying in the present? My brain has been working overtime on this one for the past few days. If you've been around me during that time, this will explain where that burning smell came from.
You're getting a very small sample of the rumination that goes on about what it takes to "do it right". There is an almost magical believe that if I find the secret formula, it will keep me alive. I must have my mantras, I must have my mantras...
You can see this happen with professional athletes all the time. A baseball player's career hinges on his batting average. If he gets four hits in two games, and he hasn't shaved, he might just not shave again until he has a game without a hit. I'm betting you've heard more than one story about a pitcher who won't wash his "lucky" socks until he loses a game. I've watched pro basketball players place a hand on the sole of each shoe each time before shooting a free throw.
So what do I have in common with professional athletes? Other than that they are athletes, got drafted, and have talent???
More than you think! First, the stakes are high for all of us (though I will claim victory in the higher stakes contest). Next, we're all trying to control things that are at least partially out of control.
A great three-point shooter makes 40% of his shots. A great batter gets a hit about 30% of the time. And a Stage IV lung cancer survivor... Well that's a stat I'm not going to look up. Probably ever. Call it superstition.
Going through treatment, of course, is within my control. But all the other factors that impact survival have not been studied to any extent. I treat each of them as if they are critical to my survival, without knowing for sure if any of them really have an impact.
At least I know I'm not alone in this one. Genevieve has her own routines to keep me alive, other people I know with cancer do this, and other people I know who had cancer in the past are still doing this. We make our own mental list, like a pilot's pre-flight checklist, and the stakes seem almost as high. We hang on to this list for dear life. Forget to check your wing flaps and your plane may just fly off the end of the runway.
So here's my own personal, customized, different-than-anyone-else's pre-flight checklist:
• Positive attitude? Check.
• Taking in the love and support of friends and family? Check.
• GIVING love and support to friends and family? Check.
• Appreciating each moment? Check.
• Finding the gifts in every situation? Check.
• Exercise? Check.
• Diet? Semi-check. (umm, the mochas and ice cream may not be on the plan.)
• Having fun? Check.
• Keeping perspective? Check
• Taking time to reflect? Check.
Now that I've shared my checklist, I've held back long enough. Time to share the news with you. On Thursday my oncologist gave us the results of my CT scan. The cancer is stable! Three more excellent months!
Gratitude? Big check!
Now I have ninety more wonderful days of living in the moment, doing what I'm doing that I think is working for me, ticking off my checklist, over and over.
I just have one favor to ask of you. Cut me a little slack if my socks start to smell.
Love,
Dann
Wow, did I miss the target! Two weeks ago I wrote and told you that my next scan would be in a couple of months. A week later I looked at my work schedule and saw the CT scan scheduled... two days away! Where did those other two months go???
Did this mean that I was taking for granted the time that I have? Am I not appreciating each day enough? Or maybe it's a good sign that I'm staying in the present? My brain has been working overtime on this one for the past few days. If you've been around me during that time, this will explain where that burning smell came from.
You're getting a very small sample of the rumination that goes on about what it takes to "do it right". There is an almost magical believe that if I find the secret formula, it will keep me alive. I must have my mantras, I must have my mantras...
You can see this happen with professional athletes all the time. A baseball player's career hinges on his batting average. If he gets four hits in two games, and he hasn't shaved, he might just not shave again until he has a game without a hit. I'm betting you've heard more than one story about a pitcher who won't wash his "lucky" socks until he loses a game. I've watched pro basketball players place a hand on the sole of each shoe each time before shooting a free throw.
So what do I have in common with professional athletes? Other than that they are athletes, got drafted, and have talent???
More than you think! First, the stakes are high for all of us (though I will claim victory in the higher stakes contest). Next, we're all trying to control things that are at least partially out of control.
A great three-point shooter makes 40% of his shots. A great batter gets a hit about 30% of the time. And a Stage IV lung cancer survivor... Well that's a stat I'm not going to look up. Probably ever. Call it superstition.
Going through treatment, of course, is within my control. But all the other factors that impact survival have not been studied to any extent. I treat each of them as if they are critical to my survival, without knowing for sure if any of them really have an impact.
At least I know I'm not alone in this one. Genevieve has her own routines to keep me alive, other people I know with cancer do this, and other people I know who had cancer in the past are still doing this. We make our own mental list, like a pilot's pre-flight checklist, and the stakes seem almost as high. We hang on to this list for dear life. Forget to check your wing flaps and your plane may just fly off the end of the runway.
So here's my own personal, customized, different-than-anyone-else's pre-flight checklist:
• Positive attitude? Check.
• Taking in the love and support of friends and family? Check.
• GIVING love and support to friends and family? Check.
• Appreciating each moment? Check.
• Finding the gifts in every situation? Check.
• Exercise? Check.
• Diet? Semi-check. (umm, the mochas and ice cream may not be on the plan.)
• Having fun? Check.
• Keeping perspective? Check
• Taking time to reflect? Check.
Now that I've shared my checklist, I've held back long enough. Time to share the news with you. On Thursday my oncologist gave us the results of my CT scan. The cancer is stable! Three more excellent months!
Gratitude? Big check!
Now I have ninety more wonderful days of living in the moment, doing what I'm doing that I think is working for me, ticking off my checklist, over and over.
I just have one favor to ask of you. Cut me a little slack if my socks start to smell.
Love,
Dann
Clueless! March 2, 2014
Friends and Family,
Have you ever read stories or seen movies where the Native American tracker is called to some wilderness location to find someone? He looks around, sniffs the air, maybe drops a couple of blades of grass to get wind speed and direction. Then he walks a few steps, and sees a pebble on the path. He looks at the pebble and says, "They came through this way within the last two days."
The brilliant tracker sees things that the rest of us mortals miss. For example, that the pebble was from rock that doesn't come from this area, and that since it rained three days ago and there is no mud on the pebble, it hasn't gotten wet.
I am not a Native American Tracker. Never mind the pebble, sometimes I miss the billboard sign for the freeway on ramp. I trample clues, I don't find them.
This tracking of clues is a skill that I wish I had, because I would have a much easier time reading the signs of what is happening to my health. In the past the cancer has grown when I thought it would be stable, and has been stable when I thought it had grown. Last year I had a sharp mid-back pain and was pretty sure it was cancer in a rib. My doc ordered an X-ray, and I felt a bit foolish, because it was nothing.
At least it seemed like nothing, until I had a routine CT scan a month later. This more precise scan showed that the rib had cancer after all. I was wrong in accepting that I was wrong the first time.
I went through this again in December when lower back pain led to a CT scan within 24 hours of calling my doc. (With my history, I think a bad case of hiccups would lead to a CT scan at this point.) The pain was diagnosed as arthritis in my back. This was baffling to me, because there was sharp pain and sudden onset. That didn't sound like arthritis to me, but I wasn't the radiologist. I'm not even a tracker!
Fortunately, they referred me to a physical therapist (PT), which was even more puzzling to me as an approach for dealing with inflammation in the bones! But again, who's the doctor-tracker here? I'm much closer to Inspector Clouseau than Dr. Kildare.
The PT did her own diagnosis based on which ways I could move without hurting, and said it was a torn disk. That made more sense to me. Better yet, treatment based on this has been very effective, so I'm buying every word of it. After two plus months in a back brace, parking in handicap zones ("playing the cancer card," I called it), and a few outings in a wheelchair, I'm now back at the gym lifting weights, doing core exercises, swimming, and shooting errant 3-pointers with abandon. The world looks pretty spectacular again! Except.....
Except for The Cough. It's been getting worse the last couple of weeks. But what does it mean??? Is it part of this cold that I've had for the past couple of months that has waxed and waned? Or is it a sign that the cancer has grown in my lungs again?
There are two ways that my oncologist tells me that we can tell if the lung cancer is growing. One is with CT scans. The next scan is a couple of months out. The other way is based on the following three questions: 1) How are you feeling? 2) Has it been harder to breathe lately? 3) Have you been coughing more lately?
Now, assume for a minute that you have a chest cold. 1) How are you feeling? 2) Has it been harder to breathe lately? 3) Have you been coughing more lately?
You see why I feel so clueless right now? I don't KNOW how I'm doing. I don't know if Tarceva has run its course and I need to hurry on to the next treatment before the cancer gets a bigger foothold, or whether I have a cold.
It reminds me of a scene from the comedy RED ("Retired Extremely Dangerous"). A frail-looking Morgan Freeman is escaping the nursing home to join his fellow ex-spies in one last mission. He climbs out and sits on his window ledge, closes his eyes, and lets go .... dropping about three inches to the ground.
So with this cough and heavier breathing, am I in for a Morgan Freeman-type drop? Or is this a real-life multi-story drop? Don't ask Inspector Clouseau - I'm clueless!
This stuff comes up frequently. Here's another recent one: I had a headache three days in a row. Does this mean the cancer has spread to my brain? To paraphrase Freud, sometimes a headache is just a headache, but the real answer is that I don’t know.
You may be wondering, “How do you deal with it when you never know how long you’re going to live?” That is the question!!!
Genevieve and I have both thought about this a lot, and have come up with the same answer. We handle it by staying in the present.
We do our best to think about how special today is. When I hold Genevieve, it feels like the greatest pleasure in the world. A good cup of coffee is a wonderful treat. Moments with friends feel that much more special. Stopping to smell the roses isn’t just a metaphor – It’s a reality. A sunny day – or hour – is cause for celebration. A walk outside in almost any weather feels like a gift. Watching my granddaughter Caitlin in a Hula show feels as special as a once-in-a-lifetime event. Even though we have seen her shows for the last nine years, we’re only seeing THIS show once, and she will never be 14 again.
It’s much, much easier to treat each moment as special when you’re only thinking about today.
You may not be as clueless as I am, and it may not matter as much if you are, because life and death are probably not hanging in the balance for you right now. I hope this lack of a sense of urgency for you doesn’t deprive you of the gifts Genevieve and I have been able to receive from doing what she calls “staying on the page of today.”
I hope you have an amazing today. After all, it’s the only day you can live in.
Love,
Dann
Have you ever read stories or seen movies where the Native American tracker is called to some wilderness location to find someone? He looks around, sniffs the air, maybe drops a couple of blades of grass to get wind speed and direction. Then he walks a few steps, and sees a pebble on the path. He looks at the pebble and says, "They came through this way within the last two days."
The brilliant tracker sees things that the rest of us mortals miss. For example, that the pebble was from rock that doesn't come from this area, and that since it rained three days ago and there is no mud on the pebble, it hasn't gotten wet.
I am not a Native American Tracker. Never mind the pebble, sometimes I miss the billboard sign for the freeway on ramp. I trample clues, I don't find them.
This tracking of clues is a skill that I wish I had, because I would have a much easier time reading the signs of what is happening to my health. In the past the cancer has grown when I thought it would be stable, and has been stable when I thought it had grown. Last year I had a sharp mid-back pain and was pretty sure it was cancer in a rib. My doc ordered an X-ray, and I felt a bit foolish, because it was nothing.
At least it seemed like nothing, until I had a routine CT scan a month later. This more precise scan showed that the rib had cancer after all. I was wrong in accepting that I was wrong the first time.
I went through this again in December when lower back pain led to a CT scan within 24 hours of calling my doc. (With my history, I think a bad case of hiccups would lead to a CT scan at this point.) The pain was diagnosed as arthritis in my back. This was baffling to me, because there was sharp pain and sudden onset. That didn't sound like arthritis to me, but I wasn't the radiologist. I'm not even a tracker!
Fortunately, they referred me to a physical therapist (PT), which was even more puzzling to me as an approach for dealing with inflammation in the bones! But again, who's the doctor-tracker here? I'm much closer to Inspector Clouseau than Dr. Kildare.
The PT did her own diagnosis based on which ways I could move without hurting, and said it was a torn disk. That made more sense to me. Better yet, treatment based on this has been very effective, so I'm buying every word of it. After two plus months in a back brace, parking in handicap zones ("playing the cancer card," I called it), and a few outings in a wheelchair, I'm now back at the gym lifting weights, doing core exercises, swimming, and shooting errant 3-pointers with abandon. The world looks pretty spectacular again! Except.....
Except for The Cough. It's been getting worse the last couple of weeks. But what does it mean??? Is it part of this cold that I've had for the past couple of months that has waxed and waned? Or is it a sign that the cancer has grown in my lungs again?
There are two ways that my oncologist tells me that we can tell if the lung cancer is growing. One is with CT scans. The next scan is a couple of months out. The other way is based on the following three questions: 1) How are you feeling? 2) Has it been harder to breathe lately? 3) Have you been coughing more lately?
Now, assume for a minute that you have a chest cold. 1) How are you feeling? 2) Has it been harder to breathe lately? 3) Have you been coughing more lately?
You see why I feel so clueless right now? I don't KNOW how I'm doing. I don't know if Tarceva has run its course and I need to hurry on to the next treatment before the cancer gets a bigger foothold, or whether I have a cold.
It reminds me of a scene from the comedy RED ("Retired Extremely Dangerous"). A frail-looking Morgan Freeman is escaping the nursing home to join his fellow ex-spies in one last mission. He climbs out and sits on his window ledge, closes his eyes, and lets go .... dropping about three inches to the ground.
So with this cough and heavier breathing, am I in for a Morgan Freeman-type drop? Or is this a real-life multi-story drop? Don't ask Inspector Clouseau - I'm clueless!
This stuff comes up frequently. Here's another recent one: I had a headache three days in a row. Does this mean the cancer has spread to my brain? To paraphrase Freud, sometimes a headache is just a headache, but the real answer is that I don’t know.
You may be wondering, “How do you deal with it when you never know how long you’re going to live?” That is the question!!!
Genevieve and I have both thought about this a lot, and have come up with the same answer. We handle it by staying in the present.
We do our best to think about how special today is. When I hold Genevieve, it feels like the greatest pleasure in the world. A good cup of coffee is a wonderful treat. Moments with friends feel that much more special. Stopping to smell the roses isn’t just a metaphor – It’s a reality. A sunny day – or hour – is cause for celebration. A walk outside in almost any weather feels like a gift. Watching my granddaughter Caitlin in a Hula show feels as special as a once-in-a-lifetime event. Even though we have seen her shows for the last nine years, we’re only seeing THIS show once, and she will never be 14 again.
It’s much, much easier to treat each moment as special when you’re only thinking about today.
You may not be as clueless as I am, and it may not matter as much if you are, because life and death are probably not hanging in the balance for you right now. I hope this lack of a sense of urgency for you doesn’t deprive you of the gifts Genevieve and I have been able to receive from doing what she calls “staying on the page of today.”
I hope you have an amazing today. After all, it’s the only day you can live in.
Love,
Dann
Had to Tell You about the Kitchen March 2, 2014
After showing you the unfinished kitchen, you couldn't miss how it turned out. The only thing brighter and more colorful is the look on Genevieve's face!
90 More Reasons for Gratitude January 18, 2014
Friends and Family,
We got the results from my latest quarterly CT scan on Thursday. I had the scan nine days earlier, but my appointment was rescheduled for a week later due to a schedule conflict for my doctor. Usually the time between having the scan and getting the results is the most anxiety provoking time of all, because SOMEBODY knows if the cancer has grown, but it’s not us! Other people with cancer have referred to this as “scanxiety”, which seems like the perfect word. Genevieve and I have lost sleep and been preoccupied many, many times leading up to these appointments.
But this time was different. Even with nine days to wait for the results, I didn’t give it more than ten minutes of thought. My breathing didn’t seem to be any different, and until I got a cold I hadn’t been coughing any more than usual. (The cold was a killer that has lasted for two weeks so far, but “killer” turns out to be a very relative term!) Genevieve was also less concerned than usual. Every night she listens carefully to me breathing after I fall asleep, and she has been reassured by the lack of congestion.
Since I’ve left you hanging this long, you’ve probably already guessed that the results were excellent. There was again no growth at all in the cancer!
I want to put this in perspective. The only reasons that people go off Tarceva are because of side effects (rare that they get that severe), or because it stops working. The average length of time that people remain on Tarceva is eight months. It has now been nine months for me, and it’s still working perfectly. I have to believe that all of your love, and my own good attitude, are big parts of why it’s still working so well. And I’m even more grateful, because I’m now in the “bonus round,” beyond the average time of effectiveness.
That is only part of the perspective. There is more. I have been alive and doing well for seven and a half years since I was first diagnosed. I am way, way ahead of the survival statistics. During that time, I have lost two friends as well as my cancer mentor to cancer. I have also lost my young nephew to an accident, and my stepfather (such an inadequate word for someone I loved so much) to Parkinson’s Disease. Things happen, and people die. I have mourned their passing, while at the same time being all the more grateful that I am somehow still alive.
I have seen the hopeful side as well. Genevieve’s twin sister Charlotte has survived breast cancer – twice! – in the last 15 years. And my brother Matt’s wife Vicki has survived three different, unrelated forms of cancer, all within the last twelve months! Both of these remarkable women have positive attitudes, both do not consider cancer to be a part of their identity, and both are cancer-free. My sisters-in-law are giving me great hope and inspiration!
I met someone recently who is going through cancer and is at an almost identical stage of treatment as I am in. He asked me what I was doing to research future treatment options. I told him I was doing nothing! He looked completely surprised. “Aren’t you checking out every option? You have to be your own best advocate. You can’t rely on just one doctor’s opinion.”
That’s when it hit me how much this journey has changed me. I realized that I started out with that perspective. I armed myself with survival statistics and alternative therapies, all of which made me worry even more about when the then-current treatment was going to fail. Now (or at least most of the time) I live for the present and don’t worry about what the next step will be. I trust that if or when the time comes, I’ll have enough time to do the research, get second opinions, do anything else that I need to do. For now, living in the present is just right. And more than occasionally I look to the past, realize just how fortunate I have been, and have another reason for gratitude.
In fact, I have had 90 more days with no change in the cancer, which is 90 more reasons for gratitude.
If you will, please take a moment and think about those you know with cancer or other serious conditions, and send some positive thoughts and/or prayers their way today. Special thoughts today for Vicki and Charlotte.
Love,
Dann
We got the results from my latest quarterly CT scan on Thursday. I had the scan nine days earlier, but my appointment was rescheduled for a week later due to a schedule conflict for my doctor. Usually the time between having the scan and getting the results is the most anxiety provoking time of all, because SOMEBODY knows if the cancer has grown, but it’s not us! Other people with cancer have referred to this as “scanxiety”, which seems like the perfect word. Genevieve and I have lost sleep and been preoccupied many, many times leading up to these appointments.
But this time was different. Even with nine days to wait for the results, I didn’t give it more than ten minutes of thought. My breathing didn’t seem to be any different, and until I got a cold I hadn’t been coughing any more than usual. (The cold was a killer that has lasted for two weeks so far, but “killer” turns out to be a very relative term!) Genevieve was also less concerned than usual. Every night she listens carefully to me breathing after I fall asleep, and she has been reassured by the lack of congestion.
Since I’ve left you hanging this long, you’ve probably already guessed that the results were excellent. There was again no growth at all in the cancer!
I want to put this in perspective. The only reasons that people go off Tarceva are because of side effects (rare that they get that severe), or because it stops working. The average length of time that people remain on Tarceva is eight months. It has now been nine months for me, and it’s still working perfectly. I have to believe that all of your love, and my own good attitude, are big parts of why it’s still working so well. And I’m even more grateful, because I’m now in the “bonus round,” beyond the average time of effectiveness.
That is only part of the perspective. There is more. I have been alive and doing well for seven and a half years since I was first diagnosed. I am way, way ahead of the survival statistics. During that time, I have lost two friends as well as my cancer mentor to cancer. I have also lost my young nephew to an accident, and my stepfather (such an inadequate word for someone I loved so much) to Parkinson’s Disease. Things happen, and people die. I have mourned their passing, while at the same time being all the more grateful that I am somehow still alive.
I have seen the hopeful side as well. Genevieve’s twin sister Charlotte has survived breast cancer – twice! – in the last 15 years. And my brother Matt’s wife Vicki has survived three different, unrelated forms of cancer, all within the last twelve months! Both of these remarkable women have positive attitudes, both do not consider cancer to be a part of their identity, and both are cancer-free. My sisters-in-law are giving me great hope and inspiration!
I met someone recently who is going through cancer and is at an almost identical stage of treatment as I am in. He asked me what I was doing to research future treatment options. I told him I was doing nothing! He looked completely surprised. “Aren’t you checking out every option? You have to be your own best advocate. You can’t rely on just one doctor’s opinion.”
That’s when it hit me how much this journey has changed me. I realized that I started out with that perspective. I armed myself with survival statistics and alternative therapies, all of which made me worry even more about when the then-current treatment was going to fail. Now (or at least most of the time) I live for the present and don’t worry about what the next step will be. I trust that if or when the time comes, I’ll have enough time to do the research, get second opinions, do anything else that I need to do. For now, living in the present is just right. And more than occasionally I look to the past, realize just how fortunate I have been, and have another reason for gratitude.
In fact, I have had 90 more days with no change in the cancer, which is 90 more reasons for gratitude.
If you will, please take a moment and think about those you know with cancer or other serious conditions, and send some positive thoughts and/or prayers their way today. Special thoughts today for Vicki and Charlotte.
Love,
Dann
Checking Out A Fellow Traveler January 9, 2014
While I was in San Diego I just happened to be surfing the web for some inspirational cancer stories, and ran across a blog that lifted my heart and tickled my funny bone. It also made me jealous of his graphics skills! Batman and Rocky Horror Picture Show? I just figured out how to add plane old pictures! You can check him out at http://craigblower.wordpress.com/.
In reading his blog I discovered that he lives in San Diego. How convenient! I contacted him, and we had a chance to meet for coffee before I returned to Portland.
The similarities floored me. He has the same type of non-smoker's cancer as me, he's been on Tarceva for almost exactly as long as me, and he had radiation to his hips a few weeks after I did. He's just a few years older than me, and values exercise to stay healthy... like me. This is the first time I've found anyone that was in similar circumstances to mine.
This last similarity is irrelevant, unless you're me: He just went through a kitchen remodel! Ours is just getting started:
We're adding new cabinets, new countertops, and not surprising to anyone who knows Genevieve, a wild backsplash of colored glass tiles semi-randomly arranged.
So Craig and I can swap tips on home remodeling, radiation treatment, Tarceva rashes - All the good stuff to build a great relationship!
In reading his blog I discovered that he lives in San Diego. How convenient! I contacted him, and we had a chance to meet for coffee before I returned to Portland.
The similarities floored me. He has the same type of non-smoker's cancer as me, he's been on Tarceva for almost exactly as long as me, and he had radiation to his hips a few weeks after I did. He's just a few years older than me, and values exercise to stay healthy... like me. This is the first time I've found anyone that was in similar circumstances to mine.
This last similarity is irrelevant, unless you're me: He just went through a kitchen remodel! Ours is just getting started:
We're adding new cabinets, new countertops, and not surprising to anyone who knows Genevieve, a wild backsplash of colored glass tiles semi-randomly arranged.
So Craig and I can swap tips on home remodeling, radiation treatment, Tarceva rashes - All the good stuff to build a great relationship!
Feeling like a Celebrity January 2, 2014
Friends and Family,
Between Christmas and New Year’s Genevieve and I went to San Diego to visit her 97 year-old father. Walt is a great guy, a former captain of industry-type with rock solid values. One of Walt's values is common-sense thrift, like not buying a new car when the old one works just fine. That's why he is still the original owner of a 1951 Woody.
About ten years after marrying Genevieve, I finally passed some secret test of either character or marital longevity, and Walt deemed me worthy to drive this beauty.
It has been an experience like none other. Just driving down the road in this purring machine brings smiles to the faces of complete strangers, and is guaranteed to start conversations any time the car rolls to a stop. The one-car parade has just come into town, and as the driver, it's easy to feel like a rock star.
Walt also has a second car. He is the original owner of a 1986 pale green Chevy sedan. This one is not so classic. Walt estimates that it has about 400,000 miles on it. It was "totaled" once, but Walt decided it was more cost effective to repair it than to take the insurance money and buy another car. Not that anyone else agreed with him, but who was the captain of industry in this room?
It has only one rear view mirror, and you have to yell a little to talk over the engine noise. I keep checking to see if I've left a door open because of the loud wind noises, but I finally figured out that it was just that the doors don't fit so well any more since the car was totaled. I found the emergency brake pedal lying on the floorboard, and the paint is faded.
All these limitations aside, Walt set the record straight. We were joking about this car the other night at dinner, but Walt was having none of it. He looked me square in the eye and said, "It runs well, doesn't it?"
I had to admit he was right. That car deserved my respect. Every time I have borrowed it, the car has been completely and unquestionably reliable. You have to admire how the darn thing just never gives up. It may look like a heap, but that beat-up old Chevrolet Celebrity just keeps on running.
Yes, that's right. I feel like a Celebrity. Not the rock star driving the classic Woody, but that beater Chevrolet Celebrity car that never gives up.
I've had more of that Celebrity experience over the past few weeks. I've been having temporary back problems that have almost no connection to the cancer, but which have left me feeling instantly (and temporarily!) a whole lot older and a whole lot more beat up. I'm wearing a back brace, and I have had to use a wheelchair on a few occasions (taking my grandkids to OMSI, getting through the airport) where I would have had to stand for too long.
Again, this is a temporary inconvenience, and I definitely don't want sympathy. I'm doing physical therapy, icing, massage, yadda yadda. It will get better. But when I look at the laundry list of things that have happened to this old beater body lately, I started to wonder how many more parts I had left that could fall off.
Then I took the Celebrity out for a drive, and I realized how much we had in common. Anyone can look at either one of us and say, "How can that body still be on the road?" It defies all logic. In either case, it doesn't matter. It works.
So my friends and family, I may look and feel more like a Celebrity right now, but I have a mission. One day I plan to grow to a ripe old age and turn into a classic Woody.
Have a healthy and happy New Year!
Love,
Dann
If only I had known I could buy one of these at the appliance store!
I found this sign at Standard TV & Appliance store in Portland, Oregon. The sign was all by itself on the wall, with no such magical equipment nearby. Arrrggh! I must have just missed out on a year-end clearance sale!
If you find any other great signs, please let me know. This one made my day!
"No Pity" with my Brother Mike - Summer 2013
Enjoying Every Moment with Genevieve- September 2013
I've Got That Certain Glow About Me November 6, 2013
If you have noticed an increasing spring in my step over the past week, there’s a very good reason. It’s because it feels good to walk again. The radiation treatment is working!
I just had my tenth and final weekday treatment in two weeks, and it has gone pretty smoothly. Each time was pretty much the same: They had me lie on the table with my legs and head in molds to keep me in the exact same position. Then they lined up my tattoos with the laser crosshairs and left the room. I got zapped for 15 seconds on one side. When that side was cooked, the machine rotated 180 degrees and zapped me from the back side, through the table. That's it. No pain, no buzz, no anything. I wouldn't have even known I was getting zapped if the white light hadn't flashed in the corner of the room. There was almost nothing to it.... at least physically.
The big challenge wasn't pain, it was modesty!
Each time I went into the treatment room with the radiation techs, I stripped down to my underpants. The curtain to the hallway was usually mostly closed, though a few times I gave it an extra tug. I was a bit under-dressed to be making new friends in the hallway.
The first time I lied down on the treatment table, I followed instructions to lower my shorts to just below my pubic bone. Since the tattoos are just a single dot, they are not that easy to find. That explains why three strangers (one man, two women), with the help of a FLASHLIGHT AND A RULER, were all peering intently at my crotch. It's a good thing my self-esteem is holding up, because it would have been pretty easy to, um, wither under the circumstances.
As they were "investigating", I glanced over to the monitor on the wall. When I looked earlier I had seen rows of meaningless numbers. This time, however, it showed a live feed of what these investigators were investigating. I tell you, if that image had been on the internet, it would have been enough exposure to make Anthony Weiner blush! Even without the internet, my face flushed hot and my feet got cold. I had to remind myself that these were professionals, and that this would be much funnier tomorrow. Maybe the day after.
The treatment team stopped being strangers to me after a while, and we all loosened up. Yesterday a new (female) tech was furrowing her brow and looking for the magic mark. Dan was across the room when he said, “His is really small.” I didn’t hesitate before responding. “You’re talking about my tattoo, right?” He laughed along with me. (To set the record straight, he also said yes.)
The biggest side effect I’ve had to deal with has been minor fatigue, which will continue for a few weeks. No biggie.
However, the plus side IS a biggie! For the first time in months, I can now run around the basketball court and chase my missed three-pointers again! I'm able to stand for more than five minutes without pain! I can go on short walks with Genevieve! I have some freedom back!
If you couldn’t tell by all the exclamation points, that added exercise also is having a great impact on my mood! Nothing like getting the heart pumping to put a smile back on my face! :-)
I hope each of you, my friends and family, are having as great of a year as I am.
Love,
Dann
Setting Phasers on Stun October 19, 2013
Friends and Family,
I told you that things were going to be boring here for a while, but my oncologist had something else in mind. He had hoped that the Tarceva would shrink the cancer that had spread to my bones, but based on pain level there has been no change in the cancer in the bones over the last five months. He recommended radiation treatment in my hips to kill the pain so that I can walk more than 3-4 blocks. After treatment l should also be able to stand for longer periods of time. I can’t wait to get back to running around the gym, chasing countless missed baskets, climbing stairs, and walking without restrictions!
Two weeks of radiation treatment starts next Thursday. Hopefully, the only symptom will be a little fatigue towards the end of the two weeks, although some other minor ones are possible.
While discussing the treatment plan with us, the radiologist showed Genevieve and me the bone scan done in the Spring. Even though we read the written report months ago, the actual images shook us both up. My skeleton looked like it had leopard spots, most heavily in my hips and lower back. Those spots are where the cancer has taken hold in my bones. That was a lot to take in.
It took both of us a few days to shake off those images. I finally got there when I remembered that we were looking at a scan that was five months old. I have been doing just fine during all that time that I didn’t know I wasn’t supposed to be doing this well. Better yet, it doesn’t seem to have gotten any worse.
The radiologist told us that the goal of radiation treatment would be symptom relief. It will kill the cancer, but only in the areas where they target. Since it’s spread throughout my system, radiation can’t get it all. With that in mind, we’re just going to have to stun this cancer enough so that I can go to the gym, stay healthy enough to fight for another day, and keep having fun!
There’s a part of me that is fascinated by the technical side of all of this. I was put on a carbon fiber rolling table that the team slid into a CT machine. The reason for carbon fiber? Radiation beams will come at my hips from 360 degrees. Some of the beams will come from below the table and pass right through the carbon fiber.
After taking new CT images, they put a small tattoo on both of my hips and just below my stomach. The three tattoos will be tracked by laser to use as reference points for where to aim the radiation. I’ve been inked! I’m finally a true Oregonian! Now, when I’m around people talking about their “tats”, I’ll have to restrain myself from saying, “You wanna see mine?”
They also made a plastic mold for my legs, so that every time I come in I will be in exactly the same position. I’m relieved about this part…. I want them to be verrrry careful with their aim down there.
We got a new perspective on the entire situation from the radiologist. She said that I was very fortunate that the cancer in my lower back is on the outside of my vertebra, away from the spinal cord. If it had been the inside, against my spinal cord, I would be dealing with a ton of back pain. I dodged yet another bullet!
At separate times both the radiologist and her resident told us that it was remarkable that I am still alive, seven years after first being diagnosed. Again, this reminds me of how fortunate I am. Where else in the world could I have access to this cutting edge level of care? Without it, I wouldn’t still be here.
I am grateful that insurance has been available to me, and that it will very soon be available to others. Not to get too political here, but I’m very happy that this is now changing on a national level. We all deserve the chance to live, not just the lucky ones who can afford insurance.
Of course, your support and my own attitude have helped a lot!
We have every tool possible available to beat this thing. With all this medical help, and with your support, I plan to stun this cancer into submission until we have a complete cure.
As long as the current path keeps working, I’m patient. I don’t mind waiting. :-)
With love and gratitude,
Dann
I told you that things were going to be boring here for a while, but my oncologist had something else in mind. He had hoped that the Tarceva would shrink the cancer that had spread to my bones, but based on pain level there has been no change in the cancer in the bones over the last five months. He recommended radiation treatment in my hips to kill the pain so that I can walk more than 3-4 blocks. After treatment l should also be able to stand for longer periods of time. I can’t wait to get back to running around the gym, chasing countless missed baskets, climbing stairs, and walking without restrictions!
Two weeks of radiation treatment starts next Thursday. Hopefully, the only symptom will be a little fatigue towards the end of the two weeks, although some other minor ones are possible.
While discussing the treatment plan with us, the radiologist showed Genevieve and me the bone scan done in the Spring. Even though we read the written report months ago, the actual images shook us both up. My skeleton looked like it had leopard spots, most heavily in my hips and lower back. Those spots are where the cancer has taken hold in my bones. That was a lot to take in.
It took both of us a few days to shake off those images. I finally got there when I remembered that we were looking at a scan that was five months old. I have been doing just fine during all that time that I didn’t know I wasn’t supposed to be doing this well. Better yet, it doesn’t seem to have gotten any worse.
The radiologist told us that the goal of radiation treatment would be symptom relief. It will kill the cancer, but only in the areas where they target. Since it’s spread throughout my system, radiation can’t get it all. With that in mind, we’re just going to have to stun this cancer enough so that I can go to the gym, stay healthy enough to fight for another day, and keep having fun!
There’s a part of me that is fascinated by the technical side of all of this. I was put on a carbon fiber rolling table that the team slid into a CT machine. The reason for carbon fiber? Radiation beams will come at my hips from 360 degrees. Some of the beams will come from below the table and pass right through the carbon fiber.
After taking new CT images, they put a small tattoo on both of my hips and just below my stomach. The three tattoos will be tracked by laser to use as reference points for where to aim the radiation. I’ve been inked! I’m finally a true Oregonian! Now, when I’m around people talking about their “tats”, I’ll have to restrain myself from saying, “You wanna see mine?”
They also made a plastic mold for my legs, so that every time I come in I will be in exactly the same position. I’m relieved about this part…. I want them to be verrrry careful with their aim down there.
We got a new perspective on the entire situation from the radiologist. She said that I was very fortunate that the cancer in my lower back is on the outside of my vertebra, away from the spinal cord. If it had been the inside, against my spinal cord, I would be dealing with a ton of back pain. I dodged yet another bullet!
At separate times both the radiologist and her resident told us that it was remarkable that I am still alive, seven years after first being diagnosed. Again, this reminds me of how fortunate I am. Where else in the world could I have access to this cutting edge level of care? Without it, I wouldn’t still be here.
I am grateful that insurance has been available to me, and that it will very soon be available to others. Not to get too political here, but I’m very happy that this is now changing on a national level. We all deserve the chance to live, not just the lucky ones who can afford insurance.
Of course, your support and my own attitude have helped a lot!
We have every tool possible available to beat this thing. With all this medical help, and with your support, I plan to stun this cancer into submission until we have a complete cure.
As long as the current path keeps working, I’m patient. I don’t mind waiting. :-)
With love and gratitude,
Dann
A Fantastic Boring Report! October 10, 2013
Friends and Family,
Today we got the results of my latest CT scan, and the news is……. BORING! Nothing has changed! Isn’t that great?
I feel like a sailor who lands at port and can barely walk… because the ground isn’t moving. I have my sea legs, but I don’t have land legs yet! It’s so normal that I’m still trying to adjust.
No growth. No shrinkage. No planned next step. The “wonder drug” shrunk the cancer just enough so I can breathe normally, and is now holding the cancer exactly where it is. We’re not waiting for the next treatment, because we don’t know what it will be.
So what am I supposed to do????
I won’t claim to have the answers, but I will tell you that I have spent a lot of time thinking about the question. When I think about how my time may be limited, these are the things that are important to me:
1. LIVE IN THE PRESENT. I don’t know if I’ll be around for my granddaughter’s next birthday, so I better make the most of this one. I don’t know if I will see my sister again, so I want to enjoy the time I have while she is in town. I don’t even know if I will see the spring, so I better make sure that I have a balance between work and play… and enjoy both now.
2. HAVE AN ATTITUDE OF GRATITUDE. Any situation feels so much better when I can find a reason for gratitude. For example, I still have bone pain, caused by the spread of cancer. That makes it difficult to walk more than three or four blocks. Although that bothers me a lot, it bothers me a whole lot less since I remembered that the first place that lung cancer usually spreads is to the brain. I am extremely grateful that it spread in the other direction. I can live with a little bone pain, but if my brain had been affected I would have lost my tools for coping. This is an enormous gift!
3. RECOGNIZE AND TREASURE THE GIFTS IN YOUR LIFE. I know what a gift Genevieve has been to me. I know what a gift it has been to have each of you as my friends and family. Yes, even cancer has been a gift. It has changed how I think, how I relate to people, and how I understand the world. Except for the near-death part, it has been almost all very positive. My perspective on life, my relationships, and my attitude have all changed for the better because of cancer.
4. STAY CONNECTED. To the people around you, to the things you are doing… if you’re not getting the most out of THIS moment, RIGHT NOW, what are you waiting for? Once this moment is gone, you won’t get it back. Use it or lose it!
5. KEEP PERSPECTIVE. The view is a lot clearer when you can step back and take a look at the big picture. For example, is chemo enjoyable? Absolutely not! BUT… I am still alive seven years after I first had chemo. This is about six and a half years longer than expected, and I’m still going strong. Chemo has given me a lot more time on this planet, so I would gladly start chemo again tomorrow if that’s what it takes.
Of course, this treatment could continue working for many years, or until I die of old age. Or it could keep working long enough for me to start on the next new treatment, and the next. I could live to be 104 years old. Would I feel tricked or cheated because I was living by the things I just told you about? Not a chance! I would feel even more blessed that I was forced to realize that time really is precious, regardless of how much of it we have left.
TAKE THE SHORTCUT! Pretend that you have cancer for a day. See how it brings the important things into focus for you. And if you can find the gifts in your life without needing the chemo, consider yourself extremely blessed.
Love,
Dann
Today we got the results of my latest CT scan, and the news is……. BORING! Nothing has changed! Isn’t that great?
I feel like a sailor who lands at port and can barely walk… because the ground isn’t moving. I have my sea legs, but I don’t have land legs yet! It’s so normal that I’m still trying to adjust.
No growth. No shrinkage. No planned next step. The “wonder drug” shrunk the cancer just enough so I can breathe normally, and is now holding the cancer exactly where it is. We’re not waiting for the next treatment, because we don’t know what it will be.
So what am I supposed to do????
I won’t claim to have the answers, but I will tell you that I have spent a lot of time thinking about the question. When I think about how my time may be limited, these are the things that are important to me:
1. LIVE IN THE PRESENT. I don’t know if I’ll be around for my granddaughter’s next birthday, so I better make the most of this one. I don’t know if I will see my sister again, so I want to enjoy the time I have while she is in town. I don’t even know if I will see the spring, so I better make sure that I have a balance between work and play… and enjoy both now.
2. HAVE AN ATTITUDE OF GRATITUDE. Any situation feels so much better when I can find a reason for gratitude. For example, I still have bone pain, caused by the spread of cancer. That makes it difficult to walk more than three or four blocks. Although that bothers me a lot, it bothers me a whole lot less since I remembered that the first place that lung cancer usually spreads is to the brain. I am extremely grateful that it spread in the other direction. I can live with a little bone pain, but if my brain had been affected I would have lost my tools for coping. This is an enormous gift!
3. RECOGNIZE AND TREASURE THE GIFTS IN YOUR LIFE. I know what a gift Genevieve has been to me. I know what a gift it has been to have each of you as my friends and family. Yes, even cancer has been a gift. It has changed how I think, how I relate to people, and how I understand the world. Except for the near-death part, it has been almost all very positive. My perspective on life, my relationships, and my attitude have all changed for the better because of cancer.
4. STAY CONNECTED. To the people around you, to the things you are doing… if you’re not getting the most out of THIS moment, RIGHT NOW, what are you waiting for? Once this moment is gone, you won’t get it back. Use it or lose it!
5. KEEP PERSPECTIVE. The view is a lot clearer when you can step back and take a look at the big picture. For example, is chemo enjoyable? Absolutely not! BUT… I am still alive seven years after I first had chemo. This is about six and a half years longer than expected, and I’m still going strong. Chemo has given me a lot more time on this planet, so I would gladly start chemo again tomorrow if that’s what it takes.
Of course, this treatment could continue working for many years, or until I die of old age. Or it could keep working long enough for me to start on the next new treatment, and the next. I could live to be 104 years old. Would I feel tricked or cheated because I was living by the things I just told you about? Not a chance! I would feel even more blessed that I was forced to realize that time really is precious, regardless of how much of it we have left.
TAKE THE SHORTCUT! Pretend that you have cancer for a day. See how it brings the important things into focus for you. And if you can find the gifts in your life without needing the chemo, consider yourself extremely blessed.
Love,
Dann
Gratitude and Appreciation August 17, 2013
Friends and Family,
The news on this end continues to be upbeat. My breathing keeps getting easier, and the already-minor side effects from Tarceva are less noticeable every day.
The warm smile on my oncologist’s face this week was the clearest way of telling us the good news. For those of you who weren’t there with Genevieve and me to picture his smile, he said that there is no point in giving me a CT scan before October, because everything is going so well.
One of the life-changing gifts that cancer has given me is a much greater sense of appreciation. I appreciate every sweet breath I take, blue skies, architecture, a friendly dog, chewing gum. It’s a really long list, but especially, I appreciate each of you. I have a very strong feeling of gratitude because you are a part of my life.
Gratitude is another one of the greatest of gifts cancer has given me. I am grateful for every day, because I know every one of them could have been taken away from me, and I don’t know how many more I will get.
AND NOW, I HAVE A FAVOR TO ASK OF YOU. Would you share with me one thing in your life for which you feel grateful? It can be very simple or very profound, a single word or a five page essay. It’s just that I’ve been droning on and on about my health for such a long time, and it would do wonders for my heart to have a conversation that isn’t all about me and my health. I’d love to know what means something to YOU. Even if I know you very well, you may surprise me.
With love and gratitude,
Dann
The news on this end continues to be upbeat. My breathing keeps getting easier, and the already-minor side effects from Tarceva are less noticeable every day.
The warm smile on my oncologist’s face this week was the clearest way of telling us the good news. For those of you who weren’t there with Genevieve and me to picture his smile, he said that there is no point in giving me a CT scan before October, because everything is going so well.
One of the life-changing gifts that cancer has given me is a much greater sense of appreciation. I appreciate every sweet breath I take, blue skies, architecture, a friendly dog, chewing gum. It’s a really long list, but especially, I appreciate each of you. I have a very strong feeling of gratitude because you are a part of my life.
Gratitude is another one of the greatest of gifts cancer has given me. I am grateful for every day, because I know every one of them could have been taken away from me, and I don’t know how many more I will get.
AND NOW, I HAVE A FAVOR TO ASK OF YOU. Would you share with me one thing in your life for which you feel grateful? It can be very simple or very profound, a single word or a five page essay. It’s just that I’ve been droning on and on about my health for such a long time, and it would do wonders for my heart to have a conversation that isn’t all about me and my health. I’d love to know what means something to YOU. Even if I know you very well, you may surprise me.
With love and gratitude,
Dann
We're Smiling! July 18, 2013
Friends and Family,
Genevieve and I met with my oncologist today to get the results from my CT scan. We got the best news that we could have hoped for! THE CANCER IS SHRINKING!
Many of the little cancer dots throughout my lungs have disappeared, and the rest are getting smaller. The cancer is also retreating from my bones. My doctor estimates that the cancer has shrunk by roughly THIRTY PERCENT!
After we got the news, Genevieve and I had to stick around for another hour so that I could get a bone-strengthening shot. During that entire hour we couldn’t pull the grins off our faces. My smile muscles are now officially sore! What a great day this turned out to be!
I have never felt more confident coming into one of these appointments than I did today. I have been feeling so much better that the only doubts that I had were of the “It’s almost too good to be true” variety. I’m not breathing hard after simple tasks, my bones don’t hurt, and my energy level is climbing. People around me have noticed the difference too. Genevieve tells me I’m not wheezing in my sleep any more, and out of the blue an acquaintance at the gym told me that I looked like I was doing better. But my friend Ed from work said it best. The other day he said, “I can tell you’re feeling better because you’re giving people pooh-pooh again.” (OK, so he might not have said “pooh-pooh”.)
While we waited for my bone-strengthening shot in the chemo infusion room, the couple sitting next to us showed us a great example of how to get the most out of the life you are given. They were both laughing and almost giddy the entire time we were there. Veronica was bald and hooked up to an IV line. She told her nurse, “I told Larry that it’s been five weeks. It’s been too long. I want to get back to chemo!” I think she had been getting chemo every week or two, before they gave her five weeks off for her body to recuperate. This was her second time having ovarian cancer. She said that this time her tumor had been the size of a cantaloupe. Larry had a bout with colon cancer, and was now doing fine. A couple of years ago he went through chemo, followed by radiation therapy, followed by chemo. Through all of this discussion, the two of them were having such a good time that you would think that they were having a party, rather than having toxic chemo drugs injected into Veronica’s system. Watching them was a great reminder that, even though you may be facing death, you can still focus on the joy of living!
For me, the other takeaway from today is that the combination of everything that we are doing is paying off. This means you, my friends. Your support gives me the added strength to continue to live, long after my expiration date. I feel an enormous sense of gratitude for the inspirational cards from Lynn and Marlene, daily texts from Rebbecca telling me how the “Tarcevian Army” is battling on my behalf, Barb and Pete wearing customized Livestrong-type support bracelets every day, and countless other messages and conversations that tell me that you care. I don’t think I can tell you just how much what you do means to me.
And of course, there is Genevieve. She has taught me that there is nothing more powerful on this earth than the love of another human being. I could fill up a page with JUST THE HIGHLIGHTS of the things that she does to show that she loves me and to help me stay alive.
I won’t deny that I’m doing my part. Attitude, diet, exercise, sleep, and good treatment decisions. These are the things that are within my control. Equally important, I try to let go of everything I can’t control.
The last piece of this success formula is treatment. My oncologist is wonderful, and Tarceva, the new “wonder drug”, is doing the job we hoped it would do. On average Tarceva works for about 8 months, although for some people it has worked for seven years and counting (five years before the drug was even officially approved). My hope has been to live long enough to outrun this cancer, and have new treatments continue to be developed before I need them. So far, it’s working. My oncologist told us today that there is a brand new drug that has been shown to be effective after Tarceva stops working! They are also working on new drugs to overcome cancer’s eventual resistance to Tarceva, so by the time I get to that point (if ever!), another option may be there. Beyond that, he said that there are “softer” forms of chemo available to me that can extend life. All of this gives us more reasons to be hopeful than we have had at any time in the two years since I was first re-diagnosed.
Two months ago it felt like I was sliding faster and faster down a steep hill, heading for a cliff. There was nothing to hang on to that would stop me from going over the edge. Next it felt like I grabbed a tree root just as my feet were dangling over the cliff, and then held my breath while I waited to see if the tree root would support my weight. Now, I have my footing again. Instead of fearing the cliff, I get to look out and admire the view!
How else do I say it? I must be the luckiest guy alive.
With love and gratitude,
Dann
Genevieve and I met with my oncologist today to get the results from my CT scan. We got the best news that we could have hoped for! THE CANCER IS SHRINKING!
Many of the little cancer dots throughout my lungs have disappeared, and the rest are getting smaller. The cancer is also retreating from my bones. My doctor estimates that the cancer has shrunk by roughly THIRTY PERCENT!
After we got the news, Genevieve and I had to stick around for another hour so that I could get a bone-strengthening shot. During that entire hour we couldn’t pull the grins off our faces. My smile muscles are now officially sore! What a great day this turned out to be!
I have never felt more confident coming into one of these appointments than I did today. I have been feeling so much better that the only doubts that I had were of the “It’s almost too good to be true” variety. I’m not breathing hard after simple tasks, my bones don’t hurt, and my energy level is climbing. People around me have noticed the difference too. Genevieve tells me I’m not wheezing in my sleep any more, and out of the blue an acquaintance at the gym told me that I looked like I was doing better. But my friend Ed from work said it best. The other day he said, “I can tell you’re feeling better because you’re giving people pooh-pooh again.” (OK, so he might not have said “pooh-pooh”.)
While we waited for my bone-strengthening shot in the chemo infusion room, the couple sitting next to us showed us a great example of how to get the most out of the life you are given. They were both laughing and almost giddy the entire time we were there. Veronica was bald and hooked up to an IV line. She told her nurse, “I told Larry that it’s been five weeks. It’s been too long. I want to get back to chemo!” I think she had been getting chemo every week or two, before they gave her five weeks off for her body to recuperate. This was her second time having ovarian cancer. She said that this time her tumor had been the size of a cantaloupe. Larry had a bout with colon cancer, and was now doing fine. A couple of years ago he went through chemo, followed by radiation therapy, followed by chemo. Through all of this discussion, the two of them were having such a good time that you would think that they were having a party, rather than having toxic chemo drugs injected into Veronica’s system. Watching them was a great reminder that, even though you may be facing death, you can still focus on the joy of living!
For me, the other takeaway from today is that the combination of everything that we are doing is paying off. This means you, my friends. Your support gives me the added strength to continue to live, long after my expiration date. I feel an enormous sense of gratitude for the inspirational cards from Lynn and Marlene, daily texts from Rebbecca telling me how the “Tarcevian Army” is battling on my behalf, Barb and Pete wearing customized Livestrong-type support bracelets every day, and countless other messages and conversations that tell me that you care. I don’t think I can tell you just how much what you do means to me.
And of course, there is Genevieve. She has taught me that there is nothing more powerful on this earth than the love of another human being. I could fill up a page with JUST THE HIGHLIGHTS of the things that she does to show that she loves me and to help me stay alive.
I won’t deny that I’m doing my part. Attitude, diet, exercise, sleep, and good treatment decisions. These are the things that are within my control. Equally important, I try to let go of everything I can’t control.
The last piece of this success formula is treatment. My oncologist is wonderful, and Tarceva, the new “wonder drug”, is doing the job we hoped it would do. On average Tarceva works for about 8 months, although for some people it has worked for seven years and counting (five years before the drug was even officially approved). My hope has been to live long enough to outrun this cancer, and have new treatments continue to be developed before I need them. So far, it’s working. My oncologist told us today that there is a brand new drug that has been shown to be effective after Tarceva stops working! They are also working on new drugs to overcome cancer’s eventual resistance to Tarceva, so by the time I get to that point (if ever!), another option may be there. Beyond that, he said that there are “softer” forms of chemo available to me that can extend life. All of this gives us more reasons to be hopeful than we have had at any time in the two years since I was first re-diagnosed.
Two months ago it felt like I was sliding faster and faster down a steep hill, heading for a cliff. There was nothing to hang on to that would stop me from going over the edge. Next it felt like I grabbed a tree root just as my feet were dangling over the cliff, and then held my breath while I waited to see if the tree root would support my weight. Now, I have my footing again. Instead of fearing the cliff, I get to look out and admire the view!
How else do I say it? I must be the luckiest guy alive.
With love and gratitude,
Dann
Tarceva, Four Weeks Later June 17, 2013
Friends and Family,
Genevieve and I saw the doctor today, but there are no test results to tell how I’m doing after four weeks on Tarceva. Dr. Lopez-Chavez said that the best indicator of whether it is working is how I am breathing. Genevieve and I both think that I have less shortness of breath, so it looks good for now. Keep thinking prunes! It’s working!
I’ll do a CT scan next month, so we expect to have concrete results to confirm what already feels right in our guts.
Dr. L-C said that the average length of time that this drug is effective is about 8-9 months, although about 20% of the people keep taking it effectively for up to 3-4 years, and a smaller percentage for much longer. Our hope is that all that prune shrinking will reduce the cancer down to NOTHING long before the Tarceva stops working! Dr. L-C thinks this is entirely possible, particularly considering that I have many little spots that are easy for the Tarceva to attack, rather than one big tumor.
So far the side effects of this medication have been entertaining, if nothing else. The rash on my face was thankfully at its worst when I was in Eastern Oregon and away from work for a long weekend. My skin got rough and flaky. My doctor told me to use a sunscreen which, when applied thickly enough to work, left me looking like a ghost. Except that on the rashy areas around my nose the white cream filled in all the rough areas, leaving me looking like Bozo wearing a white clown nose. If only I knew how to make balloon animals, I would have been a big hit with my grandkids at the pool!
It also spread to other less noticeable areas, one of which I’ll tell you about. When it covered my scalp, I was told to apply a skin cream. It made my hair look like I put my finger in an electric socket, so I only apply it at home in the evening. When it started working, my skin started flaking off. The first time I noticed it was right after I brushed my hair. My shirt looked like I had given it a good dusting of talcum powder. I never thought of a leaf blower as a personal grooming accessory until now.
Since I don’t have a cordless leaf blower to take with me out of the house, I had to come up with a Plan B. When I take off my coat, I shake it like a matador. And if you look very hard, you may discover a little bull.
The rash has spread to a few other areas as well, but the only funny part about that is attempting to be nonchalant while applying cream to all these places in the locker room. Nobody has said anything yet, but there seem to be a lot of empty lockers around me lately.
On to the really important stuff. You have my heartfelt and eternal gratitude for all of your support, which has come in so many ways. It says so much about your character that so many of you have become closer to me as I have gone through this. The easier, less painful way would be to avoid being around someone who has what is usually a terminal illness. I admire each of you for this, and only hope that I would do the same if I was in your shoes. I have regained enough perspective to find my sense of humor again, but there are times when it is still pretty scary. You make that so much easier by being there. Better yet, your being there for me makes being alive a joy every day.
Enjoy the weather. It's another beautiful day. No matter where you are.
Love,
Dann
Genevieve and I saw the doctor today, but there are no test results to tell how I’m doing after four weeks on Tarceva. Dr. Lopez-Chavez said that the best indicator of whether it is working is how I am breathing. Genevieve and I both think that I have less shortness of breath, so it looks good for now. Keep thinking prunes! It’s working!
I’ll do a CT scan next month, so we expect to have concrete results to confirm what already feels right in our guts.
Dr. L-C said that the average length of time that this drug is effective is about 8-9 months, although about 20% of the people keep taking it effectively for up to 3-4 years, and a smaller percentage for much longer. Our hope is that all that prune shrinking will reduce the cancer down to NOTHING long before the Tarceva stops working! Dr. L-C thinks this is entirely possible, particularly considering that I have many little spots that are easy for the Tarceva to attack, rather than one big tumor.
So far the side effects of this medication have been entertaining, if nothing else. The rash on my face was thankfully at its worst when I was in Eastern Oregon and away from work for a long weekend. My skin got rough and flaky. My doctor told me to use a sunscreen which, when applied thickly enough to work, left me looking like a ghost. Except that on the rashy areas around my nose the white cream filled in all the rough areas, leaving me looking like Bozo wearing a white clown nose. If only I knew how to make balloon animals, I would have been a big hit with my grandkids at the pool!
It also spread to other less noticeable areas, one of which I’ll tell you about. When it covered my scalp, I was told to apply a skin cream. It made my hair look like I put my finger in an electric socket, so I only apply it at home in the evening. When it started working, my skin started flaking off. The first time I noticed it was right after I brushed my hair. My shirt looked like I had given it a good dusting of talcum powder. I never thought of a leaf blower as a personal grooming accessory until now.
Since I don’t have a cordless leaf blower to take with me out of the house, I had to come up with a Plan B. When I take off my coat, I shake it like a matador. And if you look very hard, you may discover a little bull.
The rash has spread to a few other areas as well, but the only funny part about that is attempting to be nonchalant while applying cream to all these places in the locker room. Nobody has said anything yet, but there seem to be a lot of empty lockers around me lately.
On to the really important stuff. You have my heartfelt and eternal gratitude for all of your support, which has come in so many ways. It says so much about your character that so many of you have become closer to me as I have gone through this. The easier, less painful way would be to avoid being around someone who has what is usually a terminal illness. I admire each of you for this, and only hope that I would do the same if I was in your shoes. I have regained enough perspective to find my sense of humor again, but there are times when it is still pretty scary. You make that so much easier by being there. Better yet, your being there for me makes being alive a joy every day.
Enjoy the weather. It's another beautiful day. No matter where you are.
Love,
Dann
Wild Ride June 4, 2013
Friends and Family,
Have you seen my brain? I think my emotions kicked it to the curb somewhere along the way.
In the past 12 days, since I started Tarceva, I have taken scraplets of information and tried to use them to project how long I'm going to live. It has done me as much good as asking a fortune teller at a carnival.
Within days of starting the Tarceva the pain in my hip got much worse. Taking an ice cube's worth of information, I was sure that there was an iceberg's worth of worsening cancer under the surface. I started daydreaming about needing a hospital bed in our living room, since at this rate I would be unable to climb the stairs pretty soon.
To compound the situation, I started getting a skin rash and ulcers in my throat. Those are common side effects, but I started worrying that they would get so out of control that I would have to discontinue Tarceva. Also, if those symptoms got bad, maybe Tarceva was attacking some other internal organ, which it can do. (Never mind that it's rare.) It was one more reason why Tarceva might be taken away from me, leaving me defenseless.
My body was telling me I'm getting worse, and my brain wasn't doing a very good job of convincing me look for the positives.
I tried emailing my doctor several times, but different nurses kept answering the individual questions. I finally emailed him and said, "I need to talk to you." He called me, on a Saturday evening, from a conference in Chicago, within an hour. That, my friends, is much more dedication than I have any right to expect. I appreciate Dr. Lopez-Chavez very much, and this is just one of the reasons.
That's when things started to turn around. Dr. Lopez-Chavez said that there was no chance that the cancer could grow quickly enough to make the pain escalate that quickly. He suggested I stop doing exercise that involves my legs, since that was the only likely cause. He also told me that the side effects are a good indication that the Tarceva is working! I got a clear feeling that he truly expects the Tarceva to shrink the cancer completely, and that he’s not just trying to encourage me.
Genevieve had been telling me that for the past few nights in bed I no longer sounded like a freight train breathing in her ear. (Funny how I had discounted the sudden improvement in breathing, but not the sudden worsening of hip pain!) I asked my doctor about this: It couldn't possibly be the Tarceva working this quickly, could it? He said YES, it absolutely could be!
Since then I've been testing my breathing, and I may be imagining it, but I think it feels less constricted. I really, really want to believe.
Also, Genevieve and I thought back over the previous week. We had been hiking, walking all around Bend and Eagle Crest, played with the grandkids in the pool for hours... The increased hip pain made sense. Once I backed off, the pain subsided.
Now I have two ice cubes' worth of information, and I have decided that there is an iceberg's worth of GOOD NEWS beneath the surface! We'll know for sure in another 7 weeks, when I do my next CT scan. Meanwhile I'll try not to get too carried away, but I admit that it will be hard to stop myself from trying to read the tea leaves.
In the last email I told you that the Tarceva may cause a pimply rash, but I was OK with it as long as I didn't get the teen mood swings. HA! I've had a lot more mood swings than pimples! I guess I can deal with that as well. However, things will go much better if I go back to my mantra: Live in the NOW. Things are pretty great in the present!
I guess I'm OK with the mood swings too. However, I may need a favor from you. If you see my brain somewhere along the way, please let me know. I may not notice that it's missing for a while.
Love,
Dann
Have you seen my brain? I think my emotions kicked it to the curb somewhere along the way.
In the past 12 days, since I started Tarceva, I have taken scraplets of information and tried to use them to project how long I'm going to live. It has done me as much good as asking a fortune teller at a carnival.
Within days of starting the Tarceva the pain in my hip got much worse. Taking an ice cube's worth of information, I was sure that there was an iceberg's worth of worsening cancer under the surface. I started daydreaming about needing a hospital bed in our living room, since at this rate I would be unable to climb the stairs pretty soon.
To compound the situation, I started getting a skin rash and ulcers in my throat. Those are common side effects, but I started worrying that they would get so out of control that I would have to discontinue Tarceva. Also, if those symptoms got bad, maybe Tarceva was attacking some other internal organ, which it can do. (Never mind that it's rare.) It was one more reason why Tarceva might be taken away from me, leaving me defenseless.
My body was telling me I'm getting worse, and my brain wasn't doing a very good job of convincing me look for the positives.
I tried emailing my doctor several times, but different nurses kept answering the individual questions. I finally emailed him and said, "I need to talk to you." He called me, on a Saturday evening, from a conference in Chicago, within an hour. That, my friends, is much more dedication than I have any right to expect. I appreciate Dr. Lopez-Chavez very much, and this is just one of the reasons.
That's when things started to turn around. Dr. Lopez-Chavez said that there was no chance that the cancer could grow quickly enough to make the pain escalate that quickly. He suggested I stop doing exercise that involves my legs, since that was the only likely cause. He also told me that the side effects are a good indication that the Tarceva is working! I got a clear feeling that he truly expects the Tarceva to shrink the cancer completely, and that he’s not just trying to encourage me.
Genevieve had been telling me that for the past few nights in bed I no longer sounded like a freight train breathing in her ear. (Funny how I had discounted the sudden improvement in breathing, but not the sudden worsening of hip pain!) I asked my doctor about this: It couldn't possibly be the Tarceva working this quickly, could it? He said YES, it absolutely could be!
Since then I've been testing my breathing, and I may be imagining it, but I think it feels less constricted. I really, really want to believe.
Also, Genevieve and I thought back over the previous week. We had been hiking, walking all around Bend and Eagle Crest, played with the grandkids in the pool for hours... The increased hip pain made sense. Once I backed off, the pain subsided.
Now I have two ice cubes' worth of information, and I have decided that there is an iceberg's worth of GOOD NEWS beneath the surface! We'll know for sure in another 7 weeks, when I do my next CT scan. Meanwhile I'll try not to get too carried away, but I admit that it will be hard to stop myself from trying to read the tea leaves.
In the last email I told you that the Tarceva may cause a pimply rash, but I was OK with it as long as I didn't get the teen mood swings. HA! I've had a lot more mood swings than pimples! I guess I can deal with that as well. However, things will go much better if I go back to my mantra: Live in the NOW. Things are pretty great in the present!
I guess I'm OK with the mood swings too. However, I may need a favor from you. If you see my brain somewhere along the way, please let me know. I may not notice that it's missing for a while.
Love,
Dann
Viva Tarceva! May 22, 2013
Friends and Family,
First, I want to tell you what a gift this week has been. Thank you to everyone who reached out to me in so many ways. Your show of love is the most healing thing that could have ever happened during what was otherwise a very tough week. So many of you sent encouraging emails and called me. At work they had an Aloha Spirit da
y, so most people wore Hawaiian shirts to show their love and support for me. Thank you to Kristina and Cindy for the idea, and Kristina for the amazing graphic work! I’ve attached it so you can all see what a gift this has been. Barb brought over some of her incredible soup to nurture the soul, and it works! Rebbecca has been texting me her visualizations of beating the cancer every day, and Marje and Dick are planting a row in their garden with my name on it. Growth! How wonderful! Genevieve bought a purple “energy plate” to “charge” the Tarceva to do its job more effectively. (She made me put this in here.) So many other people have sent messages, prayers and positive energy. I am blessed to have the best kind of people around me that anyone could hope for when going through something this challenging. Or any other time, for that matter.
We got the results of my bone scan back a couple of days ago. It confirmed that the cancer has spread to a few places in my spine, my hips and one rib. But cancer schmancer! It’s time to take the cure.
I have been thinking a lot about what would have come next if I didn’t have Tarceva as an option. It makes me feel extremely fortunate to have this treatment available. Tarceva wasn’t even an FDA approved drug until just after I first saw my oncologist (almost two years ago). Now I have the option of taking the most successful lung cancer drug in the entire history of the world. Not only that, but I’m also one of the lucky few to live in a country where I have access to this drug and have health insurance.
The good fortune doesn’t stop there. Everything had to line up just right for me to get this chance. When my cancer was first diagnosed, it was tested for EGFR, which is the only genetic mutation that Tarceva treats. The results came back negative. I didn’t qualify for Tarceva. However, since I moved my treatment to OHSU and agreed to be part of a research study, my cancer was re-tested using the same lab as the other research subjects. It is only because it was re-tested that the cancer was found to have EGFR. There was an error in the earlier testing that would have never been found if I had not switched clinics. I would never have had the chance to start Tarceva. Only one out of eight people have this mutation in their cancer, so I’m coming out ahead against long odds.
Add it all up, and the odds against getting this far are extraordinary. What a gift!
Given how quickly the cancer is now spreading, I’m at a true crossroads now. If the Tarceva doesn’t work, my health could get worse quickly. If it does work, it could either stop the cancer from growing, or shrink it down to nothing. I could become cancer free for years, or even for life. As long as the side effects stay manageable, I will get a CT scan in two months and we’ll see what kind of success we’re having. Think dried prunes! (But not too many – diarrhea is another likely side effect.)
It has taken 10 days to get to this point because I’ve had to deal with one insurance company and three pharmacies (don’t ask), but Thursday morning I will finally be starting Tarceva. All I have to do is take a pill once a day, and the side effects are usually minimal compared to chemo. The most likely side effect others will notice is if I get a rash on my face that looks like mild to severe acne. Too bad the raging hormones don’t come along with it! I can deal with the acne again, as long as I don’t have to deal with being an insecure teenager all over again. Once was plenty!
This is it! Think dried prunes!
Love,
Dann
First, I want to tell you what a gift this week has been. Thank you to everyone who reached out to me in so many ways. Your show of love is the most healing thing that could have ever happened during what was otherwise a very tough week. So many of you sent encouraging emails and called me. At work they had an Aloha Spirit da
We got the results of my bone scan back a couple of days ago. It confirmed that the cancer has spread to a few places in my spine, my hips and one rib. But cancer schmancer! It’s time to take the cure.
I have been thinking a lot about what would have come next if I didn’t have Tarceva as an option. It makes me feel extremely fortunate to have this treatment available. Tarceva wasn’t even an FDA approved drug until just after I first saw my oncologist (almost two years ago). Now I have the option of taking the most successful lung cancer drug in the entire history of the world. Not only that, but I’m also one of the lucky few to live in a country where I have access to this drug and have health insurance.
The good fortune doesn’t stop there. Everything had to line up just right for me to get this chance. When my cancer was first diagnosed, it was tested for EGFR, which is the only genetic mutation that Tarceva treats. The results came back negative. I didn’t qualify for Tarceva. However, since I moved my treatment to OHSU and agreed to be part of a research study, my cancer was re-tested using the same lab as the other research subjects. It is only because it was re-tested that the cancer was found to have EGFR. There was an error in the earlier testing that would have never been found if I had not switched clinics. I would never have had the chance to start Tarceva. Only one out of eight people have this mutation in their cancer, so I’m coming out ahead against long odds.
Add it all up, and the odds against getting this far are extraordinary. What a gift!
Given how quickly the cancer is now spreading, I’m at a true crossroads now. If the Tarceva doesn’t work, my health could get worse quickly. If it does work, it could either stop the cancer from growing, or shrink it down to nothing. I could become cancer free for years, or even for life. As long as the side effects stay manageable, I will get a CT scan in two months and we’ll see what kind of success we’re having. Think dried prunes! (But not too many – diarrhea is another likely side effect.)
It has taken 10 days to get to this point because I’ve had to deal with one insurance company and three pharmacies (don’t ask), but Thursday morning I will finally be starting Tarceva. All I have to do is take a pill once a day, and the side effects are usually minimal compared to chemo. The most likely side effect others will notice is if I get a rash on my face that looks like mild to severe acne. Too bad the raging hormones don’t come along with it! I can deal with the acne again, as long as I don’t have to deal with being an insecure teenager all over again. Once was plenty!
This is it! Think dried prunes!
Love,
Dann
The Next Step May 13, 2013
Friends and Family,
Today we met with the oncologist and got the results of my latest CT scan. The cancer has grown, which wasn’t a surprise since I noticed a little more difficulty breathing. The unexpected part is that it looks on the CT scan like it has spread to my pelvic bone. I’ve had some soreness in my hip for the past couple of months, which has led to a limp, but until today I thought I might have pulled a muscle or strained a tendon in yoga. I thought that the limping caused my lower back pain, but Dr. Lopez-Chavez thinks that the back pain is also caused by cancer in the bone. I’m going to have a bone scan this Thursday to get better information. We should have the results by early next week.
Either way, what this means is that it’s time to start the next phase of treatment. But before I go into that, I have to tell you how GREAT this run has been! I have been off all treatment for the last 11 months. Whoever heard of a cancer that just sits there and doesn’t grow? The more time that has passed, the more grateful and excited I have been about how well things have been going. Every day where I haven’t had to start treatment meant that I won again. I won the grand prize of another day on this planet 335 days in a row!
As if that wasn’t enough, there’s a huge bonus. Treatment is evolving so fast that stalling off the cancer for 11 months has given me a better chance of outrunning this cancer altogether. THAT has been the big picture in my mind. The longer I stay alive, the better the chances are that more treatment options will come along that will delay the cancer, or defeat it altogether.
One of the greatest gifts that cancer has given me is to teach me about gratitude. These past few months have been some of the best days of my life. Part of this is because I am grateful for every day, and part of it is because of one of cancer’s other great gifts: Teaching me to live in the present. I have spent very little time thinking about the next CT scan, and a lot of time thinking about how beautiful life is. It is amazing how wonderful life can be when you only worry about today.
To show you how well this works, I’ll tell you what it has been like for me. Last month Genevieve and I had the most perfect trip to Hawaii imaginable. We didn’t put on our shoes the entire trip, at least until we were leaving for the airport. We swam, body surfed, and took long sunrise walks on the beach. We swam in the ocean during a rainstorm, and the raindrop splashes looked like thousands of popcorn kernels bursting out of the water. We sipped glasses of wine at sunset on the six-foot bluff in front of the beach, and watched the sea turtles lazily pop their heads up every now and then. Back in Oregon, we’ve had the most beautiful, sunny, warm spring that I’ve seen in my lifetime. Every single day has been exhilarating. We capped off the entire spring of beauty by seeing the Dalai Lama on Saturday. He talked about how having compassion for others is even more important than religious beliefs, which is both refreshing and remarkable, particularly when coming from one of the greatest spiritual leaders of our lifetime.
On to treatment. Once this prescription clears the insurance barrier (within a few days), I’ll be starting Tarceva. This is the targeted genetic treatment that was touted as the next Wonder Drug when it came out nearly two years ago, just when I was diagnosed. I am one of the very, very lucky 12% of people with lung cancer that have the right genetic mutation for this treatment to work. If it works, it will either stop the cancer from growing, or shrink it. It may even shrink it completely, even in the bones. The chances are better for me than for most people that it can shrink the cancer completely because the tumors are so small that it’s easier for the Tarceva to attack them from all sides.
The biggest question mark is how well Tarceva works when you have TWO genetic mutations, which my cancer has. There is no research on this one. Yet. I am part of the research. I aim to put the outcome in the “plus” column, but at this point we have no idea how the second mutation will impact treatment.
The cancer grows by taking the blood from surrounding tissues. There are thousands of these little suckers. The Tarceva works by choking off the blood supply to the tumors, and by preventing the cancer from creating new veins in order to add new blood supplies. I like to visualize the tumors as if cutting off the blood supply turns them into dried prunes.
Here is where I’m hoping you will come in. I could really use your help, now more than ever, with any of the following: Send your positive thoughts and prayers. Think dried prunes. Ask for help from Jesus, Krishna, Allah, the aliens, or the Cookie Monster. Send positive energy. Send a candy gram, or send an email.
In other words, in any way you want to do it, in any form you can, send love. It’s the only thing I know that works no matter what you believe in.
Thank you so much for your love and support. In my heart I truly believe that your love is what is keeping me alive.
Love,
Dann
Today we met with the oncologist and got the results of my latest CT scan. The cancer has grown, which wasn’t a surprise since I noticed a little more difficulty breathing. The unexpected part is that it looks on the CT scan like it has spread to my pelvic bone. I’ve had some soreness in my hip for the past couple of months, which has led to a limp, but until today I thought I might have pulled a muscle or strained a tendon in yoga. I thought that the limping caused my lower back pain, but Dr. Lopez-Chavez thinks that the back pain is also caused by cancer in the bone. I’m going to have a bone scan this Thursday to get better information. We should have the results by early next week.
Either way, what this means is that it’s time to start the next phase of treatment. But before I go into that, I have to tell you how GREAT this run has been! I have been off all treatment for the last 11 months. Whoever heard of a cancer that just sits there and doesn’t grow? The more time that has passed, the more grateful and excited I have been about how well things have been going. Every day where I haven’t had to start treatment meant that I won again. I won the grand prize of another day on this planet 335 days in a row!
As if that wasn’t enough, there’s a huge bonus. Treatment is evolving so fast that stalling off the cancer for 11 months has given me a better chance of outrunning this cancer altogether. THAT has been the big picture in my mind. The longer I stay alive, the better the chances are that more treatment options will come along that will delay the cancer, or defeat it altogether.
One of the greatest gifts that cancer has given me is to teach me about gratitude. These past few months have been some of the best days of my life. Part of this is because I am grateful for every day, and part of it is because of one of cancer’s other great gifts: Teaching me to live in the present. I have spent very little time thinking about the next CT scan, and a lot of time thinking about how beautiful life is. It is amazing how wonderful life can be when you only worry about today.
To show you how well this works, I’ll tell you what it has been like for me. Last month Genevieve and I had the most perfect trip to Hawaii imaginable. We didn’t put on our shoes the entire trip, at least until we were leaving for the airport. We swam, body surfed, and took long sunrise walks on the beach. We swam in the ocean during a rainstorm, and the raindrop splashes looked like thousands of popcorn kernels bursting out of the water. We sipped glasses of wine at sunset on the six-foot bluff in front of the beach, and watched the sea turtles lazily pop their heads up every now and then. Back in Oregon, we’ve had the most beautiful, sunny, warm spring that I’ve seen in my lifetime. Every single day has been exhilarating. We capped off the entire spring of beauty by seeing the Dalai Lama on Saturday. He talked about how having compassion for others is even more important than religious beliefs, which is both refreshing and remarkable, particularly when coming from one of the greatest spiritual leaders of our lifetime.
On to treatment. Once this prescription clears the insurance barrier (within a few days), I’ll be starting Tarceva. This is the targeted genetic treatment that was touted as the next Wonder Drug when it came out nearly two years ago, just when I was diagnosed. I am one of the very, very lucky 12% of people with lung cancer that have the right genetic mutation for this treatment to work. If it works, it will either stop the cancer from growing, or shrink it. It may even shrink it completely, even in the bones. The chances are better for me than for most people that it can shrink the cancer completely because the tumors are so small that it’s easier for the Tarceva to attack them from all sides.
The biggest question mark is how well Tarceva works when you have TWO genetic mutations, which my cancer has. There is no research on this one. Yet. I am part of the research. I aim to put the outcome in the “plus” column, but at this point we have no idea how the second mutation will impact treatment.
The cancer grows by taking the blood from surrounding tissues. There are thousands of these little suckers. The Tarceva works by choking off the blood supply to the tumors, and by preventing the cancer from creating new veins in order to add new blood supplies. I like to visualize the tumors as if cutting off the blood supply turns them into dried prunes.
Here is where I’m hoping you will come in. I could really use your help, now more than ever, with any of the following: Send your positive thoughts and prayers. Think dried prunes. Ask for help from Jesus, Krishna, Allah, the aliens, or the Cookie Monster. Send positive energy. Send a candy gram, or send an email.
In other words, in any way you want to do it, in any form you can, send love. It’s the only thing I know that works no matter what you believe in.
Thank you so much for your love and support. In my heart I truly believe that your love is what is keeping me alive.
Love,
Dann
Flight Club and More February 25, 2013
Friends and Family,
A couple of years ago my office moved from the first floor to the sixth floor. Duncan, one of the guys in the office, decided that this was an excellent opportunity to get a group of people to exercise. He started the “Flight Club”.
It was a pretty clever idea. He set up an Excel spreadsheet with everyone’s name along the top line, and listed every day of the year along the side. Each day, you count how many stairs you climb and plug the number into the spreadsheet. It automatically calculates how many total steps you have climbed since Flight Club began. He had it set up so that it would also calculate how many times each person climbed the equivalent of the Empire State Building, for a little extra inspiration. To make it easier to count, he had a cheat sheet that told you how many steps you climbed, depending on which flight of stairs you started on. That’s where the “flight” part comes in.
Today I celebrated a milestone. Since I began the Flight Club just under two years ago, I have climbed 100,000 steps. That’s more than 53 times up the Empire State Building. I tell you this not to brag, although I’m quite proud of this. I’m telling you this in the hope that it will offer motivation.
Those stairs have helped me through the nausea, the low energy, and the low mood points that came with chemo. The catch is this: If I hadn’t started five months before I was diagnosed with cancer, I never would have started. It’s just too overwhelming dealing with a new diagnosis and feeling sick to say, “I think I’ll start an exercise program now.” It doesn’t matter how good it is for you.
The same thing applies to the gym. I started working out regularly 11 years ago, which made it much easier to keep going when I needed chemo and surgery the first time, almost seven years ago. Since the exercise program was still in place, it worked the same way when I needed chemo and surgery this time around. In fact, both times before the surgeries I stepped up my exercise, telling myself that I was in training for surgery. This probably helped my recovery, but even more than that, it helped me to feel that I had control over at least one thing that would contribute to my health. The mental part was probably the biggest piece of it. And again, the takeaway is that this is another activity I wouldn’t have started if I had waited until after I was diagnosed.
Duncan, who started the Flight Club, left the company awhile back. Until then he was a daily stair climber. He is also an avid runner. And one more thing: He had cancer many years ago. I don’t think it’s a coincidence that someone who has learned how precious life is, would do everything he can to make the most of it.
There is only one other person in the office that has continued Flight Club with me since Duncan left. That’s my buddy John. He recently had a heart attack. That doesn’t sound like a glowing recommendation for the stairs, but it will when you hear the rest of the story. His doctor told him that other than having a faulty heart valve, his heart was in great shape. The valve how now been repaired, and he’s back on the stairs again. He barely “skipped a beat.” The day he got back to work he looked just as good as he did the day before the heart attack. What kind of shape would he be in if he hadn’t been exercising?
This brings me to my point. You may be the picture of health right now. More likely, you’re thinking, “I’m not in as good of shape as I used to be, but I’m still doing pretty well.” Further down the road, and in this case the hall, there’s Terry, who works in another office. Recently he told me, “I’m in pretty good shape. Round is a shape, isn’t it?”
Regardless of what shape you’re in, at some point something will change. If you’re already doing some exercise, you will have a much easier time coping with whatever comes your way. Better yet, you will improve your chances of preventing problems. Cancer, diabetes, the heartbreak of psoriasis. You name it.
Find something that works for you. Do it while you’re healthy.
To paraphrase an old Chinese proverb, a journey of 100,000 steps begins with a single flight.
Love,
Dann
A couple of years ago my office moved from the first floor to the sixth floor. Duncan, one of the guys in the office, decided that this was an excellent opportunity to get a group of people to exercise. He started the “Flight Club”.
It was a pretty clever idea. He set up an Excel spreadsheet with everyone’s name along the top line, and listed every day of the year along the side. Each day, you count how many stairs you climb and plug the number into the spreadsheet. It automatically calculates how many total steps you have climbed since Flight Club began. He had it set up so that it would also calculate how many times each person climbed the equivalent of the Empire State Building, for a little extra inspiration. To make it easier to count, he had a cheat sheet that told you how many steps you climbed, depending on which flight of stairs you started on. That’s where the “flight” part comes in.
Today I celebrated a milestone. Since I began the Flight Club just under two years ago, I have climbed 100,000 steps. That’s more than 53 times up the Empire State Building. I tell you this not to brag, although I’m quite proud of this. I’m telling you this in the hope that it will offer motivation.
Those stairs have helped me through the nausea, the low energy, and the low mood points that came with chemo. The catch is this: If I hadn’t started five months before I was diagnosed with cancer, I never would have started. It’s just too overwhelming dealing with a new diagnosis and feeling sick to say, “I think I’ll start an exercise program now.” It doesn’t matter how good it is for you.
The same thing applies to the gym. I started working out regularly 11 years ago, which made it much easier to keep going when I needed chemo and surgery the first time, almost seven years ago. Since the exercise program was still in place, it worked the same way when I needed chemo and surgery this time around. In fact, both times before the surgeries I stepped up my exercise, telling myself that I was in training for surgery. This probably helped my recovery, but even more than that, it helped me to feel that I had control over at least one thing that would contribute to my health. The mental part was probably the biggest piece of it. And again, the takeaway is that this is another activity I wouldn’t have started if I had waited until after I was diagnosed.
Duncan, who started the Flight Club, left the company awhile back. Until then he was a daily stair climber. He is also an avid runner. And one more thing: He had cancer many years ago. I don’t think it’s a coincidence that someone who has learned how precious life is, would do everything he can to make the most of it.
There is only one other person in the office that has continued Flight Club with me since Duncan left. That’s my buddy John. He recently had a heart attack. That doesn’t sound like a glowing recommendation for the stairs, but it will when you hear the rest of the story. His doctor told him that other than having a faulty heart valve, his heart was in great shape. The valve how now been repaired, and he’s back on the stairs again. He barely “skipped a beat.” The day he got back to work he looked just as good as he did the day before the heart attack. What kind of shape would he be in if he hadn’t been exercising?
This brings me to my point. You may be the picture of health right now. More likely, you’re thinking, “I’m not in as good of shape as I used to be, but I’m still doing pretty well.” Further down the road, and in this case the hall, there’s Terry, who works in another office. Recently he told me, “I’m in pretty good shape. Round is a shape, isn’t it?”
Regardless of what shape you’re in, at some point something will change. If you’re already doing some exercise, you will have a much easier time coping with whatever comes your way. Better yet, you will improve your chances of preventing problems. Cancer, diabetes, the heartbreak of psoriasis. You name it.
Find something that works for you. Do it while you’re healthy.
To paraphrase an old Chinese proverb, a journey of 100,000 steps begins with a single flight.
Love,
Dann