This morning I opened a deck of cards that have inspirational quotes. A dear friend gave them to me to aid in my healing. I shuffled the deck a bit and the card on top told me to “Acknowledge what’s important”. It went on to say that “Deep within, you know that the only thing that’s truly important is being in alignment with Spirit.”
Some of the things that keep me aligned and I consider important are my wife Sandy. She is my rock. She keeps me well with her love. My daughter Olivia whose innocence reminds me how precious life is. She is an inspiration to me and helps me stay focused on being healthy. My mother/mother in-law, who help us out by giving us a respite from Olivia. My brothers, who have been very generous helping me live out some of my wishes. All of my friends, who have supported me by keeping me in their thoughts and prayers. These are the important things.
Things that are not important fear, illness, worry, shame, anger and any other negative emotion. These are not worthy of my attention. I choose to focus on the positive…
Tuesday, August 11, 2009
Wednesday, August 5, 2009
This just in
Yesterday I had my third CT Scan to measure the progress of my treatment. I wasn't expecting the office to have the results back today since they out source the reading to another facility. My PA told us that she would attempt to get the results back by the time we left for the day. We waited and waited and there is a term that is used by cancer survivors called "Scanxiety" which is the feeling you have waiting for the results. Anyways the results weren't in before we left...Oh well wait another day. Our research nurse called us a little while ago with the results and they were very good. The measurable tumors in my liver are shrinking at a good pace and the original tumor in my rectum is no longer measurable via CT scan. My CEA is still at a good level. CEA is a marker that is produced by tumors. When CEA levels decrease after therapy, it means that most or all of the CEA-producing tumor has been removed.
On a sadder note the clinic was really busy today. I was able to get my favorite chair. They actually reserve it for me. There is a new guy who has throat cancer. He is a really nice guy and has a great attitude. We chat and joke around a bit to liven up the place. I always manage to get the nurses laughing when they ask if there is anything they can get me and I respond "Find me a cure for cancer." There has got to one out there and it's really important to keep the research funded. I know we are in the midst of tough economic times and money is tight however if you have budgeted money for charity please consider giving a little to the American Cancer Society in order to help rid the world of this scourge.
One of the things that I failed to mention in my last post was that I found a 4 leaf clover when I was on vacation. I consider my self lucky and I'm grateful for everyone who is supporting me though their thoughts prayers and actions. A special thanks goes out to my wife Sandy who is always there for me no matter what and my mom and mother in-law for always helping out with Olivia and to you my friends (some of whom I have never met) for reading my blog.
THANKS!
On a sadder note the clinic was really busy today. I was able to get my favorite chair. They actually reserve it for me. There is a new guy who has throat cancer. He is a really nice guy and has a great attitude. We chat and joke around a bit to liven up the place. I always manage to get the nurses laughing when they ask if there is anything they can get me and I respond "Find me a cure for cancer." There has got to one out there and it's really important to keep the research funded. I know we are in the midst of tough economic times and money is tight however if you have budgeted money for charity please consider giving a little to the American Cancer Society in order to help rid the world of this scourge.
One of the things that I failed to mention in my last post was that I found a 4 leaf clover when I was on vacation. I consider my self lucky and I'm grateful for everyone who is supporting me though their thoughts prayers and actions. A special thanks goes out to my wife Sandy who is always there for me no matter what and my mom and mother in-law for always helping out with Olivia and to you my friends (some of whom I have never met) for reading my blog.
THANKS!
Monday, August 3, 2009
August update...
Hi Everyone -
Just wanted to touch base with you all and let you know that I am progressing well through treatment. This week I go for round 9 of chemo and I have a scan scheduled for tomorrow. I hope they are able to get the results for Wednesday when I meet with the doc otherwise we'll have to wait. I will send out a message and update the blog as soon as I know the results. I think I have been lucky so far and have experienced mild side effects. The mouth sores started to appear after treatment 7. They are like canker sores and cause pain and discomfort however, the doc did prescribe some medicine to help. Its called swish and swallow and makes your mouth numb for about 1/2 an hour. It also has curative effects too as once you use it the sores disappear in a day or 2. The fatigue is biggest challenge for me. I always feel tired and its a tired that naps don't seem to cure.
We are in contact with Memorial Sloan Kettering and are making an appointment to go down for a second opinion. They do some amazing stuff down there and I want to make sure that I am getting the best treatment possible. I will keep everyone up to date on this front as well. (just in We have an appointment on August 31!)
We spent time in the Adirondack mountains last week. Our friend has a place on the shore of Schroon lake. It was great! Friends from North Carolina joined us who we haven't seen in while. It was very nice. We had great weather all week. We went on hike through the natural stone bridge and caves. Olivia rode on my back in the pack. She is very funny and remembers her time in China. When I took the pack out to put her in it she asked me if we were going to China. Olivia also had her first swim in big water as she called it. She loved to swim in the lake and play in the sand. She enjoyed playing with our friend Amy's twin boys. A good time was had by all...
I am back to work now but its going to be a short week due to treatment. I am looking forward to going to Saratoga a couple of times this month to watch the horse races and going to a couple of car shows weather permitting. The all Mustang show is coming up mid month.
Thanks to everyone for keeping me in your thoughts and prayers.
==Shawn
Just wanted to touch base with you all and let you know that I am progressing well through treatment. This week I go for round 9 of chemo and I have a scan scheduled for tomorrow. I hope they are able to get the results for Wednesday when I meet with the doc otherwise we'll have to wait. I will send out a message and update the blog as soon as I know the results. I think I have been lucky so far and have experienced mild side effects. The mouth sores started to appear after treatment 7. They are like canker sores and cause pain and discomfort however, the doc did prescribe some medicine to help. Its called swish and swallow and makes your mouth numb for about 1/2 an hour. It also has curative effects too as once you use it the sores disappear in a day or 2. The fatigue is biggest challenge for me. I always feel tired and its a tired that naps don't seem to cure.
We are in contact with Memorial Sloan Kettering and are making an appointment to go down for a second opinion. They do some amazing stuff down there and I want to make sure that I am getting the best treatment possible. I will keep everyone up to date on this front as well. (just in We have an appointment on August 31!)
We spent time in the Adirondack mountains last week. Our friend has a place on the shore of Schroon lake. It was great! Friends from North Carolina joined us who we haven't seen in while. It was very nice. We had great weather all week. We went on hike through the natural stone bridge and caves. Olivia rode on my back in the pack. She is very funny and remembers her time in China. When I took the pack out to put her in it she asked me if we were going to China. Olivia also had her first swim in big water as she called it. She loved to swim in the lake and play in the sand. She enjoyed playing with our friend Amy's twin boys. A good time was had by all...
I am back to work now but its going to be a short week due to treatment. I am looking forward to going to Saratoga a couple of times this month to watch the horse races and going to a couple of car shows weather permitting. The all Mustang show is coming up mid month.
Thanks to everyone for keeping me in your thoughts and prayers.
==Shawn
Saturday, July 18, 2009
just a post
I guess many of you have been waiting for an update from me at least that's what I am told. So here it is the latest news...
I have been having a good experience thus far. The side effects have been tolerable and unpredictable. I can feel great 1 day and crappy the next. The worse has been the fatigue the day or 2 after finishing treatment. Usually I'm unhooked from the 46 hour portable infusion pump on Friday around noon. Typically I fall sleep around 3 PM and sleep until Saturday morning. I have been going out for a 1 mile walk on my lunch hour. The exercise helps boost my energy level and gets me through the afternoon. I'm looking at treatment #8 next Wednesday after which I will have the second CT scan. I'm expecting to see good results. Please expect the same...
Work has been going great and I have a vacation coming up the week after next. We are going up to Schroon Lake in the Adirondacks. We will be staying with some friends and I'm hoping that the rain that has been plaguing upstate NY will take a vacation that week too ;).
I spent today at my niece's wedding. Had a great time spending time with my family.
I'm tired and I'm going bed now...
~Shawn
Posted 11 PM Saturday night.
I have been having a good experience thus far. The side effects have been tolerable and unpredictable. I can feel great 1 day and crappy the next. The worse has been the fatigue the day or 2 after finishing treatment. Usually I'm unhooked from the 46 hour portable infusion pump on Friday around noon. Typically I fall sleep around 3 PM and sleep until Saturday morning. I have been going out for a 1 mile walk on my lunch hour. The exercise helps boost my energy level and gets me through the afternoon. I'm looking at treatment #8 next Wednesday after which I will have the second CT scan. I'm expecting to see good results. Please expect the same...
Work has been going great and I have a vacation coming up the week after next. We are going up to Schroon Lake in the Adirondacks. We will be staying with some friends and I'm hoping that the rain that has been plaguing upstate NY will take a vacation that week too ;).
I spent today at my niece's wedding. Had a great time spending time with my family.
I'm tired and I'm going bed now...
~Shawn
Posted 11 PM Saturday night.
Monday, June 29, 2009
The F word
I found this article and thought I would share it with you:
The F word
Fatigue is the most common challenge of cancer -- pervasive, life-changing, and not responsive to rest. But there is an answer
By Julie Mason, The Ottawa CitizenJune 28, 2009
It was laundry day in our three-storey townhouse, and I'd already made two trips between bedrooms and basement.
I looked fine and, if you had asked me how I felt that day, I'd probably have answered "fine." But when the Man of the House found me snivelling at the bottom of the staircase, I was forced to admit I'd succumbed to one of cancer's unfortunate side-effects -- fatigue.
Fatigue is cancer's F word, the most common challenge of the disease. It affects as many as 90 per cent of people living with cancer -- before, during and even long after treatment.
My healthy grandma sometimes said she was "bone weary," and that's a good description of the fatigue from cancer and other chronic diseases. It's not like normal fatigue. It's a pervasive, life-changing exhaustion that doesn't respond to rest.
Walking the puppies around the block feels like a triathlon; grocery shopping is an endurance contest; making a meal requires several rest breaks; even simple things like reading a book or talking on the phone are tiring.
Other symptoms include weakness, overall lack of energy, leg pain, shortness of breath, as well as irritability, and trouble thinking, concentrating and making decisions.
One of the most difficult aspects of fatigue is its invisibility.
After recovering from the obvious effects of surgery and chemotherapy, I looked reasonably healthy, even though I felt as if I was walking through quicksand.
Everyone, including me, thought that I'd soon start doing what I'd always done.
So the Man of the House was surprised to come home and find me snoozing face-down on my desk every afternoon.
Even the most sympathetic friends found it hard to understand why I constantly said, "I'm too tired." I kept wondering where my get-up-and-go had got up and gone.
Friends and family aren't the only ones who don't recognize fatigue. It's so subjective and difficult to measure that doctors and other health-care providers tend to ignore it.
Too many physicians trivialize the problem and its impact on everyday life.
On a visit to one oncologist, I asked what I could do to help deal with the paralyzing exhaustion. She shrugged and told me fatigue is just part of having cancer.
Looking over her shoulder, I could see a poster on the bulletin board behind her for "Energize!" a seminar run in her own cancer centre and designed to help people just like me.
Happily, more physicians and cancer centres are beginning to understand that fatigue can destroy health and quality of life.
The world-class M. D. Anderson Cancer Center in Texas offers patients a unique multi-disciplinary fatigue clinic.
All patients start with a complete assessment of their physical and mental health.
Cancer-related fatigue is still a bit of a mystery, but some of the contributing causes are anemia, radiation, chemotherapy, medication, poor nutrition due to nausea or lack of appetite, pain, depression, anxiety, insomnia and stress.
At M.D. Anderson, the initial assessment is supported by a comprehensive treatment plan and a team of people to help implement it. A core recommendation is almost always exercise.
It sounds odd to consider physical activity when you're too pooped to participate, but one of the most important ways to treat fatigue is with planned exercise.
That annoying slow-walker you passed in the park was probably me.
After a day or two of dragging myself around the block, I started to feel better -- and walk faster.
Most of us never think about conserving energy, but when you don't have a lot, you learn to put important activities at the time of day when you have most energy, and plan for rest.
That's why I walk in the morning and curl up in front of The Young and the Restless in late afternoon.
Ordinary things like bending over, reaching, or standing to prepare food or wash dishes can be tiring, so it helps to arrange a kitchen or office to put everything, including a chair, close at hand.
Many people with cancer continue to work, but they often need rest during the day. Workplaces that provide a quiet room for a nap allow an employee to continue to be productive.
The fatigue from cancer or other chronic illness brings loss and grief.
It's hard to have to give up things we love -- like bike riding on Sunday mornings or bending over to plant veggies. As a stubbornly independent person, I found it difficult to accept help.
When dear friends offered homemade meals for my freezer, I resisted. I didn't want to admit I needed their help. But their generous gift of yummies let me avoid the exhaustion of preparing a meal, and I'm deeply grateful they ignored me.
These days I'm cooking again. The puppies are getting lots more walks, and I've optimistically taken my bike in for a tune-up.
Best of all, when someone asks how I feel, I can honestly answer "much better." Still, with all the emphasis on survivorship, it's easy to forget that invisible and long-term fatigue is the price many of us pay for living with cancer. Remember that the next time you pass a slow-walker in the park.
© Copyright (c) The Ottawa Citizen
The F word
Fatigue is the most common challenge of cancer -- pervasive, life-changing, and not responsive to rest. But there is an answer
By Julie Mason, The Ottawa CitizenJune 28, 2009
It was laundry day in our three-storey townhouse, and I'd already made two trips between bedrooms and basement.
I looked fine and, if you had asked me how I felt that day, I'd probably have answered "fine." But when the Man of the House found me snivelling at the bottom of the staircase, I was forced to admit I'd succumbed to one of cancer's unfortunate side-effects -- fatigue.
Fatigue is cancer's F word, the most common challenge of the disease. It affects as many as 90 per cent of people living with cancer -- before, during and even long after treatment.
My healthy grandma sometimes said she was "bone weary," and that's a good description of the fatigue from cancer and other chronic diseases. It's not like normal fatigue. It's a pervasive, life-changing exhaustion that doesn't respond to rest.
Walking the puppies around the block feels like a triathlon; grocery shopping is an endurance contest; making a meal requires several rest breaks; even simple things like reading a book or talking on the phone are tiring.
Other symptoms include weakness, overall lack of energy, leg pain, shortness of breath, as well as irritability, and trouble thinking, concentrating and making decisions.
One of the most difficult aspects of fatigue is its invisibility.
After recovering from the obvious effects of surgery and chemotherapy, I looked reasonably healthy, even though I felt as if I was walking through quicksand.
Everyone, including me, thought that I'd soon start doing what I'd always done.
So the Man of the House was surprised to come home and find me snoozing face-down on my desk every afternoon.
Even the most sympathetic friends found it hard to understand why I constantly said, "I'm too tired." I kept wondering where my get-up-and-go had got up and gone.
Friends and family aren't the only ones who don't recognize fatigue. It's so subjective and difficult to measure that doctors and other health-care providers tend to ignore it.
Too many physicians trivialize the problem and its impact on everyday life.
On a visit to one oncologist, I asked what I could do to help deal with the paralyzing exhaustion. She shrugged and told me fatigue is just part of having cancer.
Looking over her shoulder, I could see a poster on the bulletin board behind her for "Energize!" a seminar run in her own cancer centre and designed to help people just like me.
Happily, more physicians and cancer centres are beginning to understand that fatigue can destroy health and quality of life.
The world-class M. D. Anderson Cancer Center in Texas offers patients a unique multi-disciplinary fatigue clinic.
All patients start with a complete assessment of their physical and mental health.
Cancer-related fatigue is still a bit of a mystery, but some of the contributing causes are anemia, radiation, chemotherapy, medication, poor nutrition due to nausea or lack of appetite, pain, depression, anxiety, insomnia and stress.
At M.D. Anderson, the initial assessment is supported by a comprehensive treatment plan and a team of people to help implement it. A core recommendation is almost always exercise.
It sounds odd to consider physical activity when you're too pooped to participate, but one of the most important ways to treat fatigue is with planned exercise.
That annoying slow-walker you passed in the park was probably me.
After a day or two of dragging myself around the block, I started to feel better -- and walk faster.
Most of us never think about conserving energy, but when you don't have a lot, you learn to put important activities at the time of day when you have most energy, and plan for rest.
That's why I walk in the morning and curl up in front of The Young and the Restless in late afternoon.
Ordinary things like bending over, reaching, or standing to prepare food or wash dishes can be tiring, so it helps to arrange a kitchen or office to put everything, including a chair, close at hand.
Many people with cancer continue to work, but they often need rest during the day. Workplaces that provide a quiet room for a nap allow an employee to continue to be productive.
The fatigue from cancer or other chronic illness brings loss and grief.
It's hard to have to give up things we love -- like bike riding on Sunday mornings or bending over to plant veggies. As a stubbornly independent person, I found it difficult to accept help.
When dear friends offered homemade meals for my freezer, I resisted. I didn't want to admit I needed their help. But their generous gift of yummies let me avoid the exhaustion of preparing a meal, and I'm deeply grateful they ignored me.
These days I'm cooking again. The puppies are getting lots more walks, and I've optimistically taken my bike in for a tune-up.
Best of all, when someone asks how I feel, I can honestly answer "much better." Still, with all the emphasis on survivorship, it's easy to forget that invisible and long-term fatigue is the price many of us pay for living with cancer. Remember that the next time you pass a slow-walker in the park.
© Copyright (c) The Ottawa Citizen
Sunday, June 28, 2009
Thank God for Insurance...
The insurance statements have started to arrive and all I can say is thank God we have insurance. The cost of treatment is astronomical. One round of treatment costs over $16,000. I never thought that it would cost that much. I have had 6 treatments thus far to the tune of ~$100K with all of the accouterments. Unbelieveable!
Wednesday, June 10, 2009
Very Good News!
I had a meeting with my doctor today to go over the progress of the treatment so far. To date I have had 5 treatments and in between 4 and 5 I had a CT scan to compare against the baseline which was done prior to the first treatment. The doctor was very pleased with the results so far the 3 measurable tumors on my liver have shrunk in size significantly, some of the smaller nades have disappeared and the original tumor has also gone down in size too. They use a blood test called CEA. Before I started treatment my CEA was 93 today it was 5.3. A normal person's CEA is below 5 a smoker's range is between 5- 10. The CEA levels tell how active the cancer is growing the lower the number means that the cancer is under control and not progressing. What does all this mean? Basically I am responding to treatment better than expected.
I have been feeling good and the chemo side effects have not really been that bad. I am working full time at Treo Solutions as the Lead Quality Assurance Engineer. They have been really cool with my schedule of doctors appointments, treatments, labs, scans etc. I work from home 2 days during my treatment week and the rest of the time I spend in the office.
Olivia turned 2 on May 22 and she is quite a kid. She is very smart and has already learned the alphabet, counting, colors, and shapes. She is also speaking some basic Chinese words that we have been teaching her along with the help of a children's show called Ni Hao Kai Lan. She also counts to 5 in Chinese. We always show her the pictures we took while in China in hopes that she will remember her time there.
In closing I would like to THANK everyone who has kept me in their thoughts and prayers and ask you to continue to do so. We may not always have direct control of the world around us but we are always free to choose how we think and feel. It’s not what happens that makes the biggest difference but how you deal with what happens. No one can take this inner freedom, this inner power, unless we choose to give it away. I am optimistic that I will beat this disease and be around for a long time to come.
peace & PTL--
I have been feeling good and the chemo side effects have not really been that bad. I am working full time at Treo Solutions as the Lead Quality Assurance Engineer. They have been really cool with my schedule of doctors appointments, treatments, labs, scans etc. I work from home 2 days during my treatment week and the rest of the time I spend in the office.
Olivia turned 2 on May 22 and she is quite a kid. She is very smart and has already learned the alphabet, counting, colors, and shapes. She is also speaking some basic Chinese words that we have been teaching her along with the help of a children's show called Ni Hao Kai Lan. She also counts to 5 in Chinese. We always show her the pictures we took while in China in hopes that she will remember her time there.
In closing I would like to THANK everyone who has kept me in their thoughts and prayers and ask you to continue to do so. We may not always have direct control of the world around us but we are always free to choose how we think and feel. It’s not what happens that makes the biggest difference but how you deal with what happens. No one can take this inner freedom, this inner power, unless we choose to give it away. I am optimistic that I will beat this disease and be around for a long time to come.
peace & PTL--
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