Friday, October 4, 2013
Round 13 Complete
Just got back to SF from LA this afternoon after completing a 24 hour infusion of my latest treatment drug, Yondelis. The is the second dose of this drug which means that before I go for my next round I get "scans". Specifically, I will get a CT scan of my chest to monitor the activity of the tumors in my lungs. The outcome of these scans will determine if this drug is working, and I continue on it, or if it not working and we need to find another option.
Scans are a tough part of this process. There is a lot of apprehension, as you would expect, before each one and I have had bad scan results before - in January, April, July, and September of this year. Each account showed signs of growth and/or new tumors in my lungs.
After the actual scan I have to wait for the doctor to meet with me and deliver the news. In my head, before meeting with him it always goes the same way. He walks in with a mystical look on his face and sits me down in a serious manner. Then says something to the affect of, "I've never seen this before! What have you been doing?! The tumors are gone!" I play out that scenario or something similar over and over in my head as if I can manifest the outcome...however unlikely it may me. I have to hope, and pray, and visualize, and pull any positivity I can for the best.....and at the same time prepare for the worst. My experiences so far haven't been as I had hoped. I shed some tears, take some time to think, pull myself together, and get ready for the next step. There is a lot I cannot control in this journey, but I can control my positivity, what I put in my body, and how I treat my body. That is what I must focus on!
With these scans, and the determination of my future less than 3 weeks away I have to prepare for my next options. Again, the hope, the goal, the dream is that this chemo is working to shrink the tumors and we will continue to administer this drug. But, if does not give the desired outcome we have to move to another option. With that, I have a few weeks to plan the next option.
The options as I see them now are this (again, only if the current treatment is not working):
1) The clinic where I am being treated now is suggesting moving to Ifosfimide. I have been on this drug before and although we don't have data to attribute shrinkage (there are more applicable scientific terms, but we're gonna go with shrinkage) to this drug, it did at least stave off any tumor growth while I was on it. It is a tough one, a 14 day cycle (I did 7 day inpatient treatments for 4 rounds at Stanford that may have been the most physically difficult part of this journey so far), lots of fatigue, sickness, etc. Not fun
2) I am applying for another trial at the National Institute of Health in Maryland. This trial is said to have had good results so far. Trial acceptance is based on some blood sampling looking for certain proteins and some other stuff I don't quite understand. I completed the blood tests this week and if I fit the criteria this too may be an option
3) I am also researching surgical options. I wanna get these F&%*$&ing things outta there. This option is dependent on a Thorasic surgeon's thoughts on success of the surgery and willingness to do it. I have some surgeons that I am reaching out to to explore this option further. All would prefer to see some systemic results - that is to say control or shrinkage (it's just a weird word) from the chemo prior to surgery.
4) Weed oil, alkaline diet, ketogenic diet, massive amounts of LSD, I have no idea, There is a lot of alternative treatment out there and it is all an option at this point. Know of anything good??
That's the medical update. Let's get back to the fun stuff! I have a few weeks off!! I will be pretty down the next few days, but planning out options for more adventure time. Still looking at a Lake Tahoe paddle board trip if the weather looks right. Otherwise, learning to kite board, getting my skydiving certification (I want to throw on one of those squirrel suits), lots of options. Ski season will be starting soon and my adventures will become very winter focused at that time. If you have any ideas let me know!!!
More fun to come soon!!
"Survival depends on utility, but it also depends on joy, for joy is the organism telling itself that it is all right" - Deep Survival by Laurence Gonzales
If by any chance you don't know how to reach me....
jamieschou1@gmail.com
Tuesday, October 1, 2013
Carrying Cancer to the Top!
In an effort to cross at least one item off of my "things I'd like to do someday" list between every chemo treatment, I planned a 3 day, roughly 72 mile paddle board trip around Lake Tahoe that was to be completed last weekend with my good friend Tom Baird.
Unfortunately, the weather gods didn't give us a 3 day window of warm temps and low winds. It snowed a couple of nights last week and winds Sunday were forecasted to be 15 - 25mph with gusts to 40mph. These were less than ideal paddling conditions (the point of these adventures is a good time, not a battle against nature). There were a couple days that would have worked but we decided that it was all or nothing. Our backup plan - if you can call it that - was to hike Half Dome in Yosemite.
Tom and I both applied for permits Friday morning (The park only allows about 300 hikers per day up the cables to the top of Half Dome - to get to the top you must have a permit) knowing that we would not get word until Saturday afternoon and hit the road from Truckee friday night. We stayed in June Lake friday night (I promised myself that I will ski at June Mountain this winter) and headed into the park Saturday morning. After a bit of driving around we secured a camp site about 40 minutes from Yosemite Valley and the Half Dome trailhead and met up with friends from Truckee, Jason Gifford and Sara Sarrett in the valley. I also got word that our permit came through and we were good to go.
Sunday morning came with a 5:30am alarm, quick camp breakdown, some coffee, and a drive to the trailhead. We were hiking at about 7:45. The hike started a bit as I expected - it was steep and I was winded.....and there was only about 7.5 miles of steep climbing left. I didn't do too much research on this hike, but it turns out it is almost 5,000 feet of climbing over 8 miles of trail.....and then back down.
I am a little over 2 weeks out of my last chemo and although I have made a point of working out as much as my body allowed, nothing was going to prepare me for this hike. It was going to be an "off the couch" or in my case an "off the infusion chair" experience. I figured if 300 people per day can make it up there - including some interesting looking characters, I CAN make it up there. The hike was steep and slow for a majority of it - I'll spare you the details of the long walk up, hiking probably isn't the most exciting blog topic - but we took our time and made it to the cables in 6 hours.
Just a couple stories from the day
1) a guy ran up behind us at mile 6-ish. He was on the Stanford crew team and had run from the valley floor in an hour.....we reached the same spot in 4. Impressive
2) I was wearing a shirt that read "Stronger Than Cancer". A man stopped me on his way down and asked about my shirt. Turns out he was diagnosed with Bronchial cancer in his lung, told by his doctors he had one year to live, had the lung removed and was walking down from the top of Half Dome 10 years later!! There is awesome inspiration everywhere!!
The cables were an interesting experience. Steeper than I expected and full of people of all comfort and ability levels. I was on the" comfortable with the heights and location but tired as all hell" end of the spectrum. The last push was completed only by climbing 20 feet at a time and resting for a few minutes, and repeating over and over until we reached the top.
The top was an amazing reward of accomplishment, beauty and views. To be on the top of Half Dome after hiking and climbing for 6 hours was amazing! The day was full of many aches, pains, and slow steps but to look down on Yosemite Valley and the surrounding views made everything else fade away.
More meaningful than anything, was the proof to myself that cancer will not slow me down, cannot slow me down. Just because I have this dangerous, horrible disease does not mean that my life stops. Sure, my life has changed dramatically, but I will continue to push myself and do what I love! There are plenty more accomplishments, challenges and adventures in my future!!
"Get busy living or get busy dying". Picked up that quote from Red in Shawshank Redemption the other night. I am getting busy LIVING!!!
By the time we got back to the car I was exhausted, absolutely exhausted. You know? That good euphoric exhausted that you can only feel after a long day of physical activity. I have been experiencing a lot of the fatigue and tiredness associated with chemo but to feel this exhaustion was to feel happy, accomplished and even strong.
I go back into chemo this week not feeling anxious or apprehensive but feeling that strength and accomplishment, not worried about feeling sick and tired but excited for the next adventure and what opportunities for enjoyment lay ahead. I am stronger than cancer!
(for a "Stronger Than Cancer" t shirt that supports a good cause check out - http://thejackmortonfoundation.org)
Huge thanks again to Tom, Jason and Sara for watching out for me and pushing me to complete this goal!
If you are taking on an adventure and don't mind a tall, goofy, slow cancer patient tagging along let me know. My time is a bit restricted and I have some limitations, but I'm otherwise up for anything!
Send It!
Unfortunately, the weather gods didn't give us a 3 day window of warm temps and low winds. It snowed a couple of nights last week and winds Sunday were forecasted to be 15 - 25mph with gusts to 40mph. These were less than ideal paddling conditions (the point of these adventures is a good time, not a battle against nature). There were a couple days that would have worked but we decided that it was all or nothing. Our backup plan - if you can call it that - was to hike Half Dome in Yosemite.
Tom and I both applied for permits Friday morning (The park only allows about 300 hikers per day up the cables to the top of Half Dome - to get to the top you must have a permit) knowing that we would not get word until Saturday afternoon and hit the road from Truckee friday night. We stayed in June Lake friday night (I promised myself that I will ski at June Mountain this winter) and headed into the park Saturday morning. After a bit of driving around we secured a camp site about 40 minutes from Yosemite Valley and the Half Dome trailhead and met up with friends from Truckee, Jason Gifford and Sara Sarrett in the valley. I also got word that our permit came through and we were good to go.
June Lake Saturday morning
Half Dome from the valley
Sunday morning came with a 5:30am alarm, quick camp breakdown, some coffee, and a drive to the trailhead. We were hiking at about 7:45. The hike started a bit as I expected - it was steep and I was winded.....and there was only about 7.5 miles of steep climbing left. I didn't do too much research on this hike, but it turns out it is almost 5,000 feet of climbing over 8 miles of trail.....and then back down.
Early morning start
I am a little over 2 weeks out of my last chemo and although I have made a point of working out as much as my body allowed, nothing was going to prepare me for this hike. It was going to be an "off the couch" or in my case an "off the infusion chair" experience. I figured if 300 people per day can make it up there - including some interesting looking characters, I CAN make it up there. The hike was steep and slow for a majority of it - I'll spare you the details of the long walk up, hiking probably isn't the most exciting blog topic - but we took our time and made it to the cables in 6 hours.
Just a couple stories from the day
1) a guy ran up behind us at mile 6-ish. He was on the Stanford crew team and had run from the valley floor in an hour.....we reached the same spot in 4. Impressive
2) I was wearing a shirt that read "Stronger Than Cancer". A man stopped me on his way down and asked about my shirt. Turns out he was diagnosed with Bronchial cancer in his lung, told by his doctors he had one year to live, had the lung removed and was walking down from the top of Half Dome 10 years later!! There is awesome inspiration everywhere!!
The cables were an interesting experience. Steeper than I expected and full of people of all comfort and ability levels. I was on the" comfortable with the heights and location but tired as all hell" end of the spectrum. The last push was completed only by climbing 20 feet at a time and resting for a few minutes, and repeating over and over until we reached the top.
The final push up the cables
The top was an amazing reward of accomplishment, beauty and views. To be on the top of Half Dome after hiking and climbing for 6 hours was amazing! The day was full of many aches, pains, and slow steps but to look down on Yosemite Valley and the surrounding views made everything else fade away.
View from the top
More meaningful than anything, was the proof to myself that cancer will not slow me down, cannot slow me down. Just because I have this dangerous, horrible disease does not mean that my life stops. Sure, my life has changed dramatically, but I will continue to push myself and do what I love! There are plenty more accomplishments, challenges and adventures in my future!!
"Get busy living or get busy dying". Picked up that quote from Red in Shawshank Redemption the other night. I am getting busy LIVING!!!
By the time we got back to the car I was exhausted, absolutely exhausted. You know? That good euphoric exhausted that you can only feel after a long day of physical activity. I have been experiencing a lot of the fatigue and tiredness associated with chemo but to feel this exhaustion was to feel happy, accomplished and even strong.
I go back into chemo this week not feeling anxious or apprehensive but feeling that strength and accomplishment, not worried about feeling sick and tired but excited for the next adventure and what opportunities for enjoyment lay ahead. I am stronger than cancer!
(for a "Stronger Than Cancer" t shirt that supports a good cause check out - http://thejackmortonfoundation.org)
Huge thanks again to Tom, Jason and Sara for watching out for me and pushing me to complete this goal!
Jason keeping an eye on me on the way down
If you are taking on an adventure and don't mind a tall, goofy, slow cancer patient tagging along let me know. My time is a bit restricted and I have some limitations, but I'm otherwise up for anything!
Send It!
Monday, September 16, 2013
12 Rounds with the Devil
Monday, September 16th.
I finished my 12th round of chemo last friday. 12 rounds?! Never did I think this is where I would be. 12 rounds and not sure what the future holds. Knocked down 12 times...and back up again each time. roughly 12 weeks of feeling like crap, weakness, and fatigue. Thats 3 months of the last 2 years just spent recovering from chemo. Not to mention the surgeries, radiation, and a nasty infection.
I am a few days out from the last chemo - the 12th round - and I am feeling OK. I should be have some energy and normalcy in the next day or so (I'm getting pretty good at this routine and determining when I'll recover). So now starts my recovery. I've done this before - 11 times. 11 times with chemo, a few times after surgery, and once after that nasty infection. I have become accustomed to slowly hitting the gym, getting outside, paddle boarding a little, maybe mountain bike in another week or so. The strength comes back quickly, it's the stamina that's the most challenging. Stamina just takes more time to get back than I have between treatments. The 3 weeks off isn't enough. This limits my options for getting after it a little, but I do my best!
"It's not how many times you get knocked down that count, it's how many times you get back up"
I never knew that quote was attributed to George Custer, of the infamous battle of Little Bighorn - Custer's last stand. He graduated last in his class at West Point and got himself and all 210 of his men killed in one of the biggest fiascos of the american military. Strong quote though.
Anyway, as I get back up from this latest round of chemo I am planning my first "Between the Chemos" adventure (my goal is to get on some kind of outdoor adventure between each chemo treatment). There are a ton of things I want to do: learn to kiteboard, climb half dome/shasta/whitney, bike moab, ski south america, ski tour europe, ski everywhere really.... The first outing on the agenda is to paddle board around Lake Tahoe in a couple weeks. I have a week or so to get back in shape and a 4 day weather window to rip through 72 miles of lake. Look for a complete trip report in a couple weeks.
In the meantime if you have an idea for an adventure I'm all ears and ready to Send It!
I finished my 12th round of chemo last friday. 12 rounds?! Never did I think this is where I would be. 12 rounds and not sure what the future holds. Knocked down 12 times...and back up again each time. roughly 12 weeks of feeling like crap, weakness, and fatigue. Thats 3 months of the last 2 years just spent recovering from chemo. Not to mention the surgeries, radiation, and a nasty infection.
I am a few days out from the last chemo - the 12th round - and I am feeling OK. I should be have some energy and normalcy in the next day or so (I'm getting pretty good at this routine and determining when I'll recover). So now starts my recovery. I've done this before - 11 times. 11 times with chemo, a few times after surgery, and once after that nasty infection. I have become accustomed to slowly hitting the gym, getting outside, paddle boarding a little, maybe mountain bike in another week or so. The strength comes back quickly, it's the stamina that's the most challenging. Stamina just takes more time to get back than I have between treatments. The 3 weeks off isn't enough. This limits my options for getting after it a little, but I do my best!
"It's not how many times you get knocked down that count, it's how many times you get back up"
I never knew that quote was attributed to George Custer, of the infamous battle of Little Bighorn - Custer's last stand. He graduated last in his class at West Point and got himself and all 210 of his men killed in one of the biggest fiascos of the american military. Strong quote though.
Anyway, as I get back up from this latest round of chemo I am planning my first "Between the Chemos" adventure (my goal is to get on some kind of outdoor adventure between each chemo treatment). There are a ton of things I want to do: learn to kiteboard, climb half dome/shasta/whitney, bike moab, ski south america, ski tour europe, ski everywhere really.... The first outing on the agenda is to paddle board around Lake Tahoe in a couple weeks. I have a week or so to get back in shape and a 4 day weather window to rip through 72 miles of lake. Look for a complete trip report in a couple weeks.
In the meantime if you have an idea for an adventure I'm all ears and ready to Send It!
Monday, September 9, 2013
Who Am I?
My name is Jamie Schou. I am a cancer patient. I'm a cancer patient who loves to ski, mountain bike, hike, paddle board, and generally get outside for a good time. I won't let cancer take that from me!
In March of 2012 I was diagnosed with a rare form of cancer in my back called a Synovial Sarcoma (referred to as "stage IV back cancer" in the movie 50/50). The cancer was treated with 7 rounds of chemo, 25 doses of radiation, and over 20 hours of surgery. In October 2012 I was deemed clear of disease.
In April of 2013 the disease reappeared, this time it was found to have spread (metastasized) to my lungs. I have since undergone another surgery and 4 more rounds of chemo (2 separate regimens) that have not worked. The lesions in my lungs have continued to grow and this week (September 9th, 2013) I will start my third chemo regimen (Each regimen is a different drug or drug combination. I went through two different regimens in 2012 as well). The hope is that this chemo will control the growth and if so I will continue on this drug indefinitely - a good scenario would be that I am receiving this chemo for years to come...or until a better option comes along.
This new regimen is a 24 hour dose of a chemo called Yondelis, with 3 weeks off and repeat, and repeat, and repeat, and repeat, and repeat..... Looking at a long term life of chemo is extremely overwhelming to say the least. My life for some time has been in a constant state of limbo but there has always been a definitive goal or end point to each treatment. Now I am going into a long term, "hold on" scenario. As I look at my life, my calendar filled with being sick and tired for roughly a week of every three, my only choice is to adjust to this new world. I enjoy living through activity and movement and I plan to continue that lifestyle with every opportunity that I have. Here you will find my stories of adventure, trials and tribulations Between The Chemos. All of our time is finite and mine has been whittled down a little more than the rest, but I plan to make the best of what I have!
If you have an adventure you'd like to share with me please let me know! I am up for just about anything. It is amazing how much more often you say "YES" when your time becomes more limited. My advice for the day - say "YES" more! and.....
SEND IT!
I go into chemo treatment later this week - round 12! I hope to have a great story of adventure, and my first real posting coming soon.
'Till then,
"It is tough to beat an opponent that never gives up"
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