If I had told someone, anyone, what I was going to do, they probably would have restrained me or very seriously admonished me.
It needed to be done though. And I did take a break here and there, but I did my part and am happy to have helped.
We got our first ice storm of the winter on the tail end of a little snow. You mid-westerners will warm with laughter at the thought of less than an inch of winter seizing the machine of industry here. I still do too. But when it gets glazed over with a quarter inch of ice making the whole world look like a donut, it does get hard to get around. It had to go.
I instinctively wait when there is ice in the forecast. Years of experience have taught me it will be MUCH easier to get rid of with snow underneath than clearing anything and letting the ice form on the ground. If there are clear skies forecasted afterwards, even better. Let Nature help!
Of course, the day after a 'scope and like nine weeks off the poison probably aren't the best conditions for lots of shoveling, right?
eh. Like I said, I did take breaks and I had help too. I also know from experience that shoveling by yourself sucks. If you have a friend, a neighbor, your dad, out there with you then it goes -much- quicker. A few of us chipped at it off and on over a few hours mid-day and the result is a nice clear street this morning instead of the slip-n-slide of death we started with. :)
And the strange part is, I felt good. For sure I got tired and way sooner than I used to, but I recovered with a little rest on those breaks and made three sorties until the whole drive was clear.
I need to share this with Dr. Lee on Friday and ask her opinion about Cyberknife.
For those not aware, Cyberknife is an extremely tight-focus radiation therapy. The beam can nail lesions as small as 1mm. It can track what it is aimed at killing even though a patient is breathing. There is some tailoring of the system to each individual patient and possibly small metal markers to place near the therapy sites, but the recovery time is far less than other radiation oncologies. Recovery compared to chemo is not even on the same page because only the lesions are targeted, as opposed to poisoning the entire body. Killing just what's bad or slowly killing the whole person hoping what's bad dies first?
I also want to get her thoughts on a theory I came up with about chemo and fat.
From what little I know about the liver, its job is to nab extra sugar from the bloodstream and convert it for storage as fat. When the body needs sugar, the liver takes care of retrieving fat and putting the sugar back into the blood. I also think I have it right that fat is stored in a LIFO type of system; that's Last In, First Out for you non-dataflow personalities out there. In other words, the youngest fat you put away is the first to go when you need energy (or are trying to lose weight)... kinda like the last box you put in the moving van is the first one you take out when you get to your new house.
From what I know of chemotherapy, it works because it looks like sugar. Cancer cells are dividing and signaling the body for food and, as the chemo floats by, they eat up anything that looks like sugar. If that happens to be the chemo, the cancer cells die. We chemo patients feel lousy because our healthy cells eat the faux-sugar and die too. Bummer.
I got to wondering if chemo is treated by the liver just like sugar? Is excess chemo stashed away as fat just like excess sugar? And if the newest fat is burned first in times of need, does that mean chemo-fat gets tunred back into chemo???
If so, then I think there may be a way to hasten chemo recovery; lose fat.
Notice I didn't say lose weight.
This has worried me for a while too. It is well established that adding muscle to the body is a sure-fire way to increase metabolism and lose fat. The more muscles there are, the more they need to eat. But with chemo floating around killing anything that eats it, new muscle cells DIE, and I've been told it hurts. A lot.
So, if I'm right, how do we burn off fat to get rid of stored chemo without adding too much muscle or suffering a lot of pain? My first thought is perhaps some sort of blood test to see if there is chemo still present. I don't even know if that is possible. Ideally, once the chemo isn't showing up, muscle building can safely begin.
We shall see...
Thursday, January 29, 2009
Tuesday, January 27, 2009
:D
well, after the horror of last night's prep, today's 'scope was a breeze. I had to get an IV and repositioning a piece of tape hurt worse than the needle going in.
Better news than that was a near sparkling clean report form the colonoscopy. Dr. Grasso took plenty of pictures and provided a map/legend of where the pictures were taken so I can share them with Dr. Lee. One polyp was found and removed. It was less than 5mm and gave no argument. Otherwise, the prep had worked well and everything looked great... giving no more weight to the PET scan analysis of "consistent with disease."
Dr. Lee and I will talk things over on Friday. I'm going to see if there aren't some more focused therapies or maybe trials that need volunteers to put the attention right on my little liver lesions. Say that five times fast! If there is something out there, I'd like to go for it. The chemo wipes out all of me in an effort to get these tiny little bastards. If we can zap them, and just them, I think I'd like to give it a try.
Gotta go for now; I'm due for a haircut. Meanwhile, I keep seeing Feedjit hits with searches that resolve to the blog or past entries. If you're one of those searchers and you need advice, my experience, or just a friend who's been where you're heading, please do not hesitate to comment or email me. I'm here to help!
Better news than that was a near sparkling clean report form the colonoscopy. Dr. Grasso took plenty of pictures and provided a map/legend of where the pictures were taken so I can share them with Dr. Lee. One polyp was found and removed. It was less than 5mm and gave no argument. Otherwise, the prep had worked well and everything looked great... giving no more weight to the PET scan analysis of "consistent with disease."
Dr. Lee and I will talk things over on Friday. I'm going to see if there aren't some more focused therapies or maybe trials that need volunteers to put the attention right on my little liver lesions. Say that five times fast! If there is something out there, I'd like to go for it. The chemo wipes out all of me in an effort to get these tiny little bastards. If we can zap them, and just them, I think I'd like to give it a try.
Gotta go for now; I'm due for a haircut. Meanwhile, I keep seeing Feedjit hits with searches that resolve to the blog or past entries. If you're one of those searchers and you need advice, my experience, or just a friend who's been where you're heading, please do not hesitate to comment or email me. I'm here to help!
Thursday, January 22, 2009
do something
Like a zillion others, I too watched the Inauguration on Tuesday. I'm not going to express any sort of opinion other than some disappointment at the 'personal resonsibility' message of the President and the irony of the National Mall left looking like a landfill. It was a great day, a cold day, but pick up your trash, people!
On that note of responsibility, I want to toss out a challenge to each of you.
You see, I'll be getting a colonoscopy next Tuesday morning. We need to rule out the possibility of any new, unwanted growth in the region my most CT and PET scans have kept being reported as 'consistent with disease progression.' Dr. Lee wants to be sure. Dr. Grasso feels (literally, ahem!) the scar tissue is there and possibly still healing. Only eyes on the area of concern will give us answers.
That's where you come in. Metaphorically speaking!
I'd like to challenge you to take some personal responsibility for your health. If you haven't already, I reeeeally want you to get up to speed on your own family history of cancer or other chronic/hereditary disease. If you're a child, ask your parents. If you're a parent, make time to talk with your children.
As I've said before, the discussion doesn't have to be some dramatically urgent shoulders pushed up against a wall Hollywood movie moment. Just ping your loved ones and ask for some time in the near future to sit down in a quiet place and have a little chat. You need to know... they need to know... loving one another means gently broaching these tender subjects. The awkwardness can be defused with a little bit of a business approach and a lot of caring for each other.
And when you get informed, do something about it. Had I known I probably had an elevated risk for colo-rectal cancer, I would have gladly sought to be screened for Lynch Syndrome. That simple blood test may have sent me in for a colonoscopy or other exam/tests well before I developed symptoms or spent months thinking I was just eating poorly or needed to get into better shape. It could have headed off this entire process of the last seventeen months and kept me from dreading the next three.
Eh, I say dread, but I know I'll get through. I'll feel crummy and I will fail in several ways, but I'll do what I have to do.
But you can do something, now, and that's what I want to encourage. i want to save you from the consequences of putting things off, denying a problem, or ignoring an unpleasant possibility. The earlier you know, the better! No matter how uncomfortable it may be today, I guarantee it will be much worse tomorrow.
Lord willing, you are healthy or at least informed of what to look out for. With that, please consider helping someone else out. These are selfish days; times that need the restoring power of helping another person even if from a distance. I am very excited about the things the Stand Up To Cancer (SU2C) organization are doing. I know there are walks, runs, rides, etc for people to get involved in. Even the car guys out there can turn laps in BMW's for the Komen Foundation and help conquer breast cancer. All you need to do is look around for an opportunity... and then be brave enough to sign up.
Finally, though it does not feel like doing anything at all, you can pray. No, it doesn't feel like -doing- anything, but it puts your heart in motion. It is both the least effort and the most commitment to just quietly ask for the well-being of someone else. It may hurt. We think we get so much more out of putting our hands on something and fixing it, but the truth is there is so much more in putting our hearts into caring. Go for it!
On that note of responsibility, I want to toss out a challenge to each of you.
You see, I'll be getting a colonoscopy next Tuesday morning. We need to rule out the possibility of any new, unwanted growth in the region my most CT and PET scans have kept being reported as 'consistent with disease progression.' Dr. Lee wants to be sure. Dr. Grasso feels (literally, ahem!) the scar tissue is there and possibly still healing. Only eyes on the area of concern will give us answers.
That's where you come in. Metaphorically speaking!
I'd like to challenge you to take some personal responsibility for your health. If you haven't already, I reeeeally want you to get up to speed on your own family history of cancer or other chronic/hereditary disease. If you're a child, ask your parents. If you're a parent, make time to talk with your children.
As I've said before, the discussion doesn't have to be some dramatically urgent shoulders pushed up against a wall Hollywood movie moment. Just ping your loved ones and ask for some time in the near future to sit down in a quiet place and have a little chat. You need to know... they need to know... loving one another means gently broaching these tender subjects. The awkwardness can be defused with a little bit of a business approach and a lot of caring for each other.
And when you get informed, do something about it. Had I known I probably had an elevated risk for colo-rectal cancer, I would have gladly sought to be screened for Lynch Syndrome. That simple blood test may have sent me in for a colonoscopy or other exam/tests well before I developed symptoms or spent months thinking I was just eating poorly or needed to get into better shape. It could have headed off this entire process of the last seventeen months and kept me from dreading the next three.
Eh, I say dread, but I know I'll get through. I'll feel crummy and I will fail in several ways, but I'll do what I have to do.
But you can do something, now, and that's what I want to encourage. i want to save you from the consequences of putting things off, denying a problem, or ignoring an unpleasant possibility. The earlier you know, the better! No matter how uncomfortable it may be today, I guarantee it will be much worse tomorrow.
Lord willing, you are healthy or at least informed of what to look out for. With that, please consider helping someone else out. These are selfish days; times that need the restoring power of helping another person even if from a distance. I am very excited about the things the Stand Up To Cancer (SU2C) organization are doing. I know there are walks, runs, rides, etc for people to get involved in. Even the car guys out there can turn laps in BMW's for the Komen Foundation and help conquer breast cancer. All you need to do is look around for an opportunity... and then be brave enough to sign up.
Finally, though it does not feel like doing anything at all, you can pray. No, it doesn't feel like -doing- anything, but it puts your heart in motion. It is both the least effort and the most commitment to just quietly ask for the well-being of someone else. It may hurt. We think we get so much more out of putting our hands on something and fixing it, but the truth is there is so much more in putting our hearts into caring. Go for it!
Wednesday, January 7, 2009
there's no place like home... there's no place like home...
Being married to Jody is rubbing off.
You see, she has this ability to absorb bad news and bounce back. I hate to be sharing this today, but we learned yesterday that I'm not out of the woods yet.
No one wanted to hear otherwise more than me. I held it together and was able to figure out the next steps. The facts are though, the metastatic disease just hasn't been done away with yet and I will have to go back on chemo in the next few weeks. We're going to go for another 3 month series but this time we will cross the Xeloda with Avastin to see if we can both kill and checkmate things out of my system.
It was tough to take and both Jody and I spent the better part of the day stunned, teary, and contemplative. The truth of the matter really is though, I'm still in the fight. I'd like to be out of it and I'm beyond ready to be done, but I'm not quitting. I know what to expect and though it doesn't please me, I'll push through.
Today, I had to take care of business at work. I got a curveball that helped firmly engage my brain and take my mind off of the inevitable that I'll be taking care of arranging today. When I got home I cautiously browsed the PET scan images on the CD Dr. Lee let me take home...
Instead of making me feel worse, I actually brightened up a bit. Don't get me wrong! It's kinda creepy looking at quasi-transparent images of yourself; especially when you not only know it's you but you can see it's your own body, right down to your own face! I looked for the four spots on my liver and the spot on my lung where the tracer shows lesions...
I could only find three, really. And that was with playing with the colors of the images. I'm not sure Dr. Lee knew how to use the little browser program that came on the CD because she showed us just black and white images and had a hard time stopping the animation. Maybe being a geek is helping me consume this stuff a little easier? I admit, seeing my scan images spinning and morphing like an old Peter Gabriel music video is kinda cool. Bonus points for spotting the Wizard of Oz reference. ;)
The report had comments about tracer showing up in my vocal cords, rectum, and still in my right lung. But I was in between two very sick weeks that required antibiotics that did nothing for my sore throat. I was also, um, fighting very loose bowels that morning. The analyst reported that I said I'd eaten nothing for fourteen hours though my metabolism was sparking off uptake all over that could have triggered false positives in the scan. The liver spots though, they're the biggest concerns... and they're not big enough to make surgery worth my while.
So yeah, though I didn't get the all clear yesterday there is a silver lining. There has been tremendous improvement over my initial diagnosis; the primary tumor is gone, CEA is now down to 2.8 from a high of 19, there is activity in the places noted ever since the beginning but it is on the run.
I have always been bigger than others and need more medicine when I get sick or a headache. When the bottle says "4-6 hours" that always meant 3-4 hours to me. Thus, I'm not surprised. I'm not thrilled, but I'm not surprised.
Before I get back on the poison, I will have to have another colonoscopy. This has always been on the horizon and is warranted now to rule out the tracer showing up down in the surgery site. As neato as the PET scan is, it is still high tech holistics. A 'scope will put eyes on the problem and allow for a biopsy to be taken of anything actually seen by a doctor.
I also need to have my port checked out. The last two flushes haven't gone very well and I'm worried it has closed up or otherwise quit functioning. It had been getting accessed every other week for a large portion of last year but, since July, it was just every month or so to be kept in good working order. The Avastin I'll go onto shortly goes in intravenously and, as always, I'd prefer not to needle my arm.
I also need to open a line to my new health insurance company, Aetna. I will dearly miss Denise at Kaiser, but I had little choice... Lockheed dropped Kaiser. But I picked up the Total Choice option with no referrals required, the exact same out of pocket premiums as the HMO, and $500 from the company to use toward the first $500 of any out of pocket expenses I do rack up. Not too shabby so far. I just want to make sure there is someone on my side as we try to finish this fight.
You see, she has this ability to absorb bad news and bounce back. I hate to be sharing this today, but we learned yesterday that I'm not out of the woods yet.
No one wanted to hear otherwise more than me. I held it together and was able to figure out the next steps. The facts are though, the metastatic disease just hasn't been done away with yet and I will have to go back on chemo in the next few weeks. We're going to go for another 3 month series but this time we will cross the Xeloda with Avastin to see if we can both kill and checkmate things out of my system.
It was tough to take and both Jody and I spent the better part of the day stunned, teary, and contemplative. The truth of the matter really is though, I'm still in the fight. I'd like to be out of it and I'm beyond ready to be done, but I'm not quitting. I know what to expect and though it doesn't please me, I'll push through.
Today, I had to take care of business at work. I got a curveball that helped firmly engage my brain and take my mind off of the inevitable that I'll be taking care of arranging today. When I got home I cautiously browsed the PET scan images on the CD Dr. Lee let me take home...
Instead of making me feel worse, I actually brightened up a bit. Don't get me wrong! It's kinda creepy looking at quasi-transparent images of yourself; especially when you not only know it's you but you can see it's your own body, right down to your own face! I looked for the four spots on my liver and the spot on my lung where the tracer shows lesions...
I could only find three, really. And that was with playing with the colors of the images. I'm not sure Dr. Lee knew how to use the little browser program that came on the CD because she showed us just black and white images and had a hard time stopping the animation. Maybe being a geek is helping me consume this stuff a little easier? I admit, seeing my scan images spinning and morphing like an old Peter Gabriel music video is kinda cool. Bonus points for spotting the Wizard of Oz reference. ;)
The report had comments about tracer showing up in my vocal cords, rectum, and still in my right lung. But I was in between two very sick weeks that required antibiotics that did nothing for my sore throat. I was also, um, fighting very loose bowels that morning. The analyst reported that I said I'd eaten nothing for fourteen hours though my metabolism was sparking off uptake all over that could have triggered false positives in the scan. The liver spots though, they're the biggest concerns... and they're not big enough to make surgery worth my while.
So yeah, though I didn't get the all clear yesterday there is a silver lining. There has been tremendous improvement over my initial diagnosis; the primary tumor is gone, CEA is now down to 2.8 from a high of 19, there is activity in the places noted ever since the beginning but it is on the run.
I have always been bigger than others and need more medicine when I get sick or a headache. When the bottle says "4-6 hours" that always meant 3-4 hours to me. Thus, I'm not surprised. I'm not thrilled, but I'm not surprised.
Before I get back on the poison, I will have to have another colonoscopy. This has always been on the horizon and is warranted now to rule out the tracer showing up down in the surgery site. As neato as the PET scan is, it is still high tech holistics. A 'scope will put eyes on the problem and allow for a biopsy to be taken of anything actually seen by a doctor.
I also need to have my port checked out. The last two flushes haven't gone very well and I'm worried it has closed up or otherwise quit functioning. It had been getting accessed every other week for a large portion of last year but, since July, it was just every month or so to be kept in good working order. The Avastin I'll go onto shortly goes in intravenously and, as always, I'd prefer not to needle my arm.
I also need to open a line to my new health insurance company, Aetna. I will dearly miss Denise at Kaiser, but I had little choice... Lockheed dropped Kaiser. But I picked up the Total Choice option with no referrals required, the exact same out of pocket premiums as the HMO, and $500 from the company to use toward the first $500 of any out of pocket expenses I do rack up. Not too shabby so far. I just want to make sure there is someone on my side as we try to finish this fight.
Thursday, January 1, 2009
Happy New Year!
I missed posting about Christmas because, well, I got sick again. Or still, depending upon your point of view. Bad enough that a day ahead of what we planned, I tried to visit a walk-in clinic up where my in-laws live and we wound up leaving a day early.
I was in a pretty bad way. It had been a week since I'd finished the antibiotic I'd hoped would be enough firepower to win the fight. I did get well enough to lay still for that PET scan you may be wondering about, but by Christmas Day, enemy forces had regrouped and taken me down.
This only dampened Christmas though. I came home with some excellent new fleeces and two new shirts, some fluffy/grippy socks, a healthy eating cookbook, a Thai curry cookbook, curries and rice to go with, a bunch of clever gifts from Germany courtesy of my traveling in-laws, and a very cool new pair of FRS/GRMS rechargeable walkie-talkies among lots of other gifts and sweets.
Back home I paid a second visit to my own doctor and got some horse-sized antibiotics for a second battle. This one is going well so far helped along by my Mom's Russian spiced tea.
I've receovered my strength enough to have muscled my big surprise Christmas gift down into the basement for a temporary setup. Do you know what pachinko is?
Ye of my longer associates know just what I'm talking about; the highly addictive Japanese gambling game. Imagine pinball stood upright, about as wide as your shoulders, with hundreds of small pinballs falling through a strategically placed playing field of brass nails. The nails dodge and direct the falling balls into and way from traps; some that open and close. Balls that are caught cause the machine to yield more balls in return... but those that are lost you don't get back. Hence the gambling aspect.
In Japan these machines are lined up in parlours in even the smallest towns. Players buy a set quantity of balls and risk them in the machines to win a variety of prizes ranging from plastic toys in the fun parlours to groceries in some pragmatic places and motorcycles or cars in high stakes casinos.
My oldest friends know I've found and fixed a handful of antique machines. They are fascinating to figure out as all the older ones really need is gravity to work. The falling balls do all the magic both in front of and behind the machines.
This new one though... it does need electricity.
But that's because it's a personalized Las Vegas casino! It has music and digital slot reels to make the caught balls even more hopeful as one plays. And it has lights. LOTS OF LIGHTS. And it happens to be Star Wars themed. (Think of a movie, rock band, Japanese cartoon, etc... there is probably a pachinko machine with that theme out there)
My Nerd Night friends punk'd my big time with this thing. They all chipped in to buy it and surprised me last week when I showed up for our regular Monday night out. I walked into the cantina and noticed it. I thought the restaurant had bought one to go with the video games, jukebox, and poker machines. I was completely shocked when they told me it was for me!
I've got some pictures to share later and a little video I found online... enjoy!
Better yet, come visit Jody and I to play it yourself!
Look at the video: http://www.youtube.com/watch?v=bnS19GVSvsE
I was in a pretty bad way. It had been a week since I'd finished the antibiotic I'd hoped would be enough firepower to win the fight. I did get well enough to lay still for that PET scan you may be wondering about, but by Christmas Day, enemy forces had regrouped and taken me down.
This only dampened Christmas though. I came home with some excellent new fleeces and two new shirts, some fluffy/grippy socks, a healthy eating cookbook, a Thai curry cookbook, curries and rice to go with, a bunch of clever gifts from Germany courtesy of my traveling in-laws, and a very cool new pair of FRS/GRMS rechargeable walkie-talkies among lots of other gifts and sweets.
Back home I paid a second visit to my own doctor and got some horse-sized antibiotics for a second battle. This one is going well so far helped along by my Mom's Russian spiced tea.
I've receovered my strength enough to have muscled my big surprise Christmas gift down into the basement for a temporary setup. Do you know what pachinko is?
Ye of my longer associates know just what I'm talking about; the highly addictive Japanese gambling game. Imagine pinball stood upright, about as wide as your shoulders, with hundreds of small pinballs falling through a strategically placed playing field of brass nails. The nails dodge and direct the falling balls into and way from traps; some that open and close. Balls that are caught cause the machine to yield more balls in return... but those that are lost you don't get back. Hence the gambling aspect.
In Japan these machines are lined up in parlours in even the smallest towns. Players buy a set quantity of balls and risk them in the machines to win a variety of prizes ranging from plastic toys in the fun parlours to groceries in some pragmatic places and motorcycles or cars in high stakes casinos.
My oldest friends know I've found and fixed a handful of antique machines. They are fascinating to figure out as all the older ones really need is gravity to work. The falling balls do all the magic both in front of and behind the machines.
This new one though... it does need electricity.
But that's because it's a personalized Las Vegas casino! It has music and digital slot reels to make the caught balls even more hopeful as one plays. And it has lights. LOTS OF LIGHTS. And it happens to be Star Wars themed. (Think of a movie, rock band, Japanese cartoon, etc... there is probably a pachinko machine with that theme out there)
My Nerd Night friends punk'd my big time with this thing. They all chipped in to buy it and surprised me last week when I showed up for our regular Monday night out. I walked into the cantina and noticed it. I thought the restaurant had bought one to go with the video games, jukebox, and poker machines. I was completely shocked when they told me it was for me!
I've got some pictures to share later and a little video I found online... enjoy!
Better yet, come visit Jody and I to play it yourself!
Look at the video: http://www.youtube.com/watch?v=bnS19GVSvsE
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