It is the end of September and that means Las Vegas hockey tournament time! For about 8 years now, a bunch of friends and I have made a yearly trip to Las Vegas, often to get our butts kicked in an adult hockey tournament but we have won it once. I even got the all tournament goalie for our division and I display the trophy proudly in my cube at work.
The team has many of the usual suspects that many of you already know. Brian Einsweiler, Robert Robinson, Erin Genz, Rob DeLine, and Rich Vitamvas. There are a few people joining us for the first time this year and we hope that our team is able to get a win with them here.
Part of having cancer is learning to live and appreciate life with and in spite of the disease. There are some out there that feel that cancer patients need to look sickly, need to sit at home, or need to quietly accept their fate. I have to admit that I get a bit of satisfaction when some people are shocked to find out that I have cancer since I don't fit the mold that many have of those with these diseases (37 ski days in the 2010-2011 season).
In fact, I am having surgery on Monday 10/3 to fix the arthritis and bursitis in my shoulder (go ahead, make the old guy jokes if you want). Some would say that I should not bother with repairing my body since the cancer could take me or that it is a waste of good money/resources. I have to admit that I, too, get caught up in those thoughts as well at times.
10 years ago, we built the house that we currently live in and I had the thoughts in the back of my mind about whether I was going to be here long enough to pay off the loan. 8 years ago, we bought me a new car and I questioned how long of loan I should get 'just in case'.
I try my best not to live that way. I try to live my life, assuming the best possible outcome. This means that I continue to floss my teeth because I will be needing those teeth when I really get old. I continue to put money in a 401k because I am going to need that money when I finally get to retire. Cancer does not mean lay down and die. If anything, it means you need to wake up and really start appreciating the life that you have, treasuring every moment, planning for the win.
Thursday, September 29, 2011
Sunday, September 25, 2011
How quick are you going to get up?
Some of you may remember a Nike video from early 2010 called The Human Chain featuring Lance Armstrong as well as both amateur and professional athletes from martial arts to bull riding to gymnastics. This video and the music around it is one of the most inspiring sequences I have seen for everyone, not just cancer survivors.
The song is by the Hours who go through a number of examples in history of folks who were hit with difficulties or tragedies and found the strength to grit their way through those situations. In the song, they talk of Ludwig Van Beethoven and how he went deaf and didn't give a damn. I am sure he did give a damn and he was pissed off at the inability to hear the music he was creating and had created but he did not let that stop him.
What has knocked you down lately? Is it a long lasting relationship that has ended? Have you been hit by disease like I have been? How about loss of job, being passed over for a promotion, or financial difficulty? Everyone has been knocked down and no one is going to remember you getting knocked down. The only thing that matters is how you are going to respond to that tragedy. Even the bible talks of Job getting hit again and again and again by successively more difficult stressors. The point of the story is not the difficulties but the way he stood fast.
I got knocked down 10 years ago with my first diagnosis, knocked down again with my second surgery in 2003, again in 2008 with my third surgery, and just recently with the resurgence of the tumors. I intend to continue to get back up again and keep fighting this disease, knowing I can keep knocking it back down. As long as I am alive, I will continue to fight this disease. Perhaps it will eventually win but it will not win without a fight.
The song is by the Hours who go through a number of examples in history of folks who were hit with difficulties or tragedies and found the strength to grit their way through those situations. In the song, they talk of Ludwig Van Beethoven and how he went deaf and didn't give a damn. I am sure he did give a damn and he was pissed off at the inability to hear the music he was creating and had created but he did not let that stop him.
What has knocked you down lately? Is it a long lasting relationship that has ended? Have you been hit by disease like I have been? How about loss of job, being passed over for a promotion, or financial difficulty? Everyone has been knocked down and no one is going to remember you getting knocked down. The only thing that matters is how you are going to respond to that tragedy. Even the bible talks of Job getting hit again and again and again by successively more difficult stressors. The point of the story is not the difficulties but the way he stood fast.
I got knocked down 10 years ago with my first diagnosis, knocked down again with my second surgery in 2003, again in 2008 with my third surgery, and just recently with the resurgence of the tumors. I intend to continue to get back up again and keep fighting this disease, knowing I can keep knocking it back down. As long as I am alive, I will continue to fight this disease. Perhaps it will eventually win but it will not win without a fight.
Thursday, September 22, 2011
Intent to Treat
I got those words for the first time from my Dr in Iowa City, Dr O'Dorisio. I have been seeing Dr Odo for about 6 years now to help my Doctor here in Colorado Springs understand how to treat this rare cancer.
My main tumor markers are trending upwards at this point in a relatively dramatic fashion over the last year with my Pancreostatin increasing by a factor of four (see http://goo.gl/JT8RD). Pancreostatin is a strong indicator of the amount and activity of tumor in my Liver and a CT scan I had last week indicates that liver activity is exactly what I have going on.
So, what do we do now? The first treatment I will be likely receiving is Sir-Spheres yearly next year. This is a treatment where radioactive microspheres are inserted directly into my liver through the femoral artery. This is done as an outpatient procedure and the main side affects are some flu like symptoms for a couple of days after the surgery. On the plus side, I will be officially significantly radioactive for about a week! It is recommended that I don't do any cross country travel by plane or train nor should I sleep in a bed with anyone else. I have to stay away from children and pregnant women as well.
These microspheres will lodge themselves in blood vessels where the tumors have congregated in my liver and, for about two weeks, will burn the tumors away. After two weeks, the tumor should be significantly reduced in my liver and, over the next few months, my liver will regenerate and we will wait for the cancer to come back. This treatment usually be repeated about three times before it becomes ineffective but that is not to worry.
There are further treatments that are coming down the pipe. Steve Jobs has a cancer that is very similar to mine and went to Bassel Switzerland (http://goo.gl/AwKon) to have a systemic (whole body) treatment. This treatment is just starting to be explored in the US down in Dallas and I would anticipate that it will be available here before I need it. If it is not, I will need to find a way to come up with the $20,000 it requires for travel and treatment in Bassel.
My main tumor markers are trending upwards at this point in a relatively dramatic fashion over the last year with my Pancreostatin increasing by a factor of four (see http://goo.gl/JT8RD). Pancreostatin is a strong indicator of the amount and activity of tumor in my Liver and a CT scan I had last week indicates that liver activity is exactly what I have going on.
So, what do we do now? The first treatment I will be likely receiving is Sir-Spheres yearly next year. This is a treatment where radioactive microspheres are inserted directly into my liver through the femoral artery. This is done as an outpatient procedure and the main side affects are some flu like symptoms for a couple of days after the surgery. On the plus side, I will be officially significantly radioactive for about a week! It is recommended that I don't do any cross country travel by plane or train nor should I sleep in a bed with anyone else. I have to stay away from children and pregnant women as well.
These microspheres will lodge themselves in blood vessels where the tumors have congregated in my liver and, for about two weeks, will burn the tumors away. After two weeks, the tumor should be significantly reduced in my liver and, over the next few months, my liver will regenerate and we will wait for the cancer to come back. This treatment usually be repeated about three times before it becomes ineffective but that is not to worry.
There are further treatments that are coming down the pipe. Steve Jobs has a cancer that is very similar to mine and went to Bassel Switzerland (http://goo.gl/AwKon) to have a systemic (whole body) treatment. This treatment is just starting to be explored in the US down in Dallas and I would anticipate that it will be available here before I need it. If it is not, I will need to find a way to come up with the $20,000 it requires for travel and treatment in Bassel.
Sunday, September 11, 2011
Your cancer sucks too
I know the blog is MyCancerSucks but I am not so arrogant as to think that your cancer does not suck too. In some ways, my cancer is a great deal (if one has to have cancer). It grows relatively slowly and there are many treatments to beat it back some when it does start to grow. There are the annoying side affects of explosive diarrhea, flushing, the occasional surgery and, not to mention, the 19 gauge intra-muscular shots that I get every three weeks.
Other cancers can be extremely aggressive, leading to death within just a few short months of diagnosis. Other cancers have treatment options that are incredibly debilitating, making my shots look like a walk in the park. Every three weeks, I go to the infusion room to get my shot and I see so many other people who have lost all their hair, have wasted away, or need aid just staying on their feet and I feel fortunate.
When I was diagnosed just 10 years ago, my wildest dreams were to see at least one of my kids get to high school and live long enough for my then 6 month old son to remember me. It is now 10 years later and I get to
Other cancers can be extremely aggressive, leading to death within just a few short months of diagnosis. Other cancers have treatment options that are incredibly debilitating, making my shots look like a walk in the park. Every three weeks, I go to the infusion room to get my shot and I see so many other people who have lost all their hair, have wasted away, or need aid just staying on their feet and I feel fortunate.
When I was diagnosed just 10 years ago, my wildest dreams were to see at least one of my kids get to high school and live long enough for my then 6 month old son to remember me. It is now 10 years later and I get to
- watch my oldest son play soccer for the JV team (and get pulled up to the Varsity team on Tuesday)
- see my youngest son be a leader on his soccer team, fish all day long, and beat me in the first 5k that I have ever completely run
- show my daughter the joy that is all the bump runs at Mary Jane, watching her leave me behind on Outhouse and Drunken Frenchman
- see my wife graduate with a culinary arts degree and cook me some of the best food a cancer tolerator could hope for
- Win a pair of All Tournament Goalie trophies
Wednesday, September 7, 2011
10 year anniversary
Well, September 11th is coming up and it marks the 10 year anniversary of the first serious symptoms that lead to my cancer diagnosis. 10 years ago, I started having extreme abdominal cramps, lack of appetite and, although I did not really notice it at the time, fewer and fewer bowel movements. I privately suspected that some of these symptoms might be psychosomatic symptoms due to stress over the 9/11 activities but I did not feel stressed in any other way.
Finally, after 2 months of progressively worse cramps and doctors continually claiming I had IBS, I went to the emergency room on 10/24 where they gave me 2 liters of saline through an IV which made me feel many times better. I was then admitted to the hospital and the GI doc suspected Crohn's disease which was probably his favorite diagnosis. They scoped me and then, finally, on Friday, gave me some Barium and performed some X-rays of my bowel.
They noticed some considerable swelling in the small bowel and what looked like an obvious blockage and they elected to operate, uncertain of what they would find. Unaware that my wife had already been told, I was then informed on Saturday morning that I had was was almost certainly cancer. The surgeon was unsure but suspected a carcinoid tumor and provided a tiny bit of literature on these rare tumors.
Typical carcinoid tumors strike adults in their 60's and, as a 34 year old, I was somewhat outside of the 'normal' patient. These tumors typically grow fairly slowly but the surgeon had removed a small lesion from my liver (cancerous) and identified more cancer in my mescenteric lymph nodes. While carcinoid is slow growing, it is also incurable if the tumors have metastasized as mine had.
I hooked up with an oncologist while in the hospital and began an initial treatment of Sandostatin-LAR once every 4 weeks and Pegylated Interferon once a week to attempt to arrest the growth of the already slow growing tumors. This continued for 18 months and my oncologist at that time incorrectly announced me cured.
That did not turn out to be the case as the mescenteric lymph nodes began growing and, in 2003, I had my second laparotomy to remove the tumors that had encased the artery leading to the mescentary. I then restarted on the Sandostain-LAR and PegIntron for another 2 years. After two years, we stopped the PegIntron but continued the Sandostatin.
In 2006, my tumor markers started rising again and we restarted the PegIntron to attempt to slow the growth of the tumors. This did not prove to be successful as I had surgery again in January of 2008 to remove further tumors that were encroaching on my bladder and rectum as well as throughout my abdomen.
That brings us up to today. We are continuing to follow certain blood markers to track the progress of my disease. The first is Chromogranin-A. It has traditionally hovered around 40 (just at the high level of normal) and, prior to each of my surgeries, it has risen dramatically along side of general tumor growth. I have not been able to get a reliable measure of this marker this year as the measures vary considerably from lab to lab and I am having trouble getting my new insurance to use the old lab.
The second marker I follow is Pancreostatin. This marker shows the progression of the tumor in the liver. Mine has usually hovered between 150 and 200 (again, high side of normal) but the last two blood draws (April and August) have had values of 260 and 630. This trend indicates that the tumors in the liver are almost certainly growing.
I have a CT scan tomorrow and am hoping to get a more solid picture of how the cancer has progressed.
Finally, after 2 months of progressively worse cramps and doctors continually claiming I had IBS, I went to the emergency room on 10/24 where they gave me 2 liters of saline through an IV which made me feel many times better. I was then admitted to the hospital and the GI doc suspected Crohn's disease which was probably his favorite diagnosis. They scoped me and then, finally, on Friday, gave me some Barium and performed some X-rays of my bowel.
They noticed some considerable swelling in the small bowel and what looked like an obvious blockage and they elected to operate, uncertain of what they would find. Unaware that my wife had already been told, I was then informed on Saturday morning that I had was was almost certainly cancer. The surgeon was unsure but suspected a carcinoid tumor and provided a tiny bit of literature on these rare tumors.
Typical carcinoid tumors strike adults in their 60's and, as a 34 year old, I was somewhat outside of the 'normal' patient. These tumors typically grow fairly slowly but the surgeon had removed a small lesion from my liver (cancerous) and identified more cancer in my mescenteric lymph nodes. While carcinoid is slow growing, it is also incurable if the tumors have metastasized as mine had.
I hooked up with an oncologist while in the hospital and began an initial treatment of Sandostatin-LAR once every 4 weeks and Pegylated Interferon once a week to attempt to arrest the growth of the already slow growing tumors. This continued for 18 months and my oncologist at that time incorrectly announced me cured.
That did not turn out to be the case as the mescenteric lymph nodes began growing and, in 2003, I had my second laparotomy to remove the tumors that had encased the artery leading to the mescentary. I then restarted on the Sandostain-LAR and PegIntron for another 2 years. After two years, we stopped the PegIntron but continued the Sandostatin.
In 2006, my tumor markers started rising again and we restarted the PegIntron to attempt to slow the growth of the tumors. This did not prove to be successful as I had surgery again in January of 2008 to remove further tumors that were encroaching on my bladder and rectum as well as throughout my abdomen.
That brings us up to today. We are continuing to follow certain blood markers to track the progress of my disease. The first is Chromogranin-A. It has traditionally hovered around 40 (just at the high level of normal) and, prior to each of my surgeries, it has risen dramatically along side of general tumor growth. I have not been able to get a reliable measure of this marker this year as the measures vary considerably from lab to lab and I am having trouble getting my new insurance to use the old lab.
The second marker I follow is Pancreostatin. This marker shows the progression of the tumor in the liver. Mine has usually hovered between 150 and 200 (again, high side of normal) but the last two blood draws (April and August) have had values of 260 and 630. This trend indicates that the tumors in the liver are almost certainly growing.
I have a CT scan tomorrow and am hoping to get a more solid picture of how the cancer has progressed.
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