And Jeff, here is the photo update (couldn't post this last night directly from my BB):
Wednesday, March 31, 2010
oops, gravel and skin don't mix
Had a nice mountain bike ride tonight until the last 200 yards when I hit some gravel and decided to body surf the gravel a bit. My right arm and leg are now minus a bit of epidermis. That shower did NOT feel good! Dosed up with Neosporin on the few deep scratches so hopefully everything will heal OK. Even on the way off the bike I was thinking "Don't hit Pete. Don't hit Pete." So Pete came through unscathed and I'm left feeling like a bit of a dumb ass for falling off my bike in a flat gravel road. Oh well - I guess that's why they call them accidents!
And Jeff, here is the photo update (couldn't post this last night directly from my BB):
And Jeff, here is the photo update (couldn't post this last night directly from my BB):
Tuesday, March 30, 2010
Hammer time on the bike
Today I did my first hard ride since the surgery on my neck, chemo, etc. It was a beautiful day today in Boulder and we got four guys together for a lunch ride who are all at pretty much the same level on the bike. We cruised around in east and north Boulder for a while and put the hammer down on occasion. It felt pretty hard to me, but hard in a good way. I didn't notice any sudden chemo-jello-legs, my lungs felt pretty good, my recovery was ok (not great). Pretty much what you would expect for trying to push a hard ride in late March. And, it was my fourth day in a row on the bike. I was really, really happy to be able to still ride with these guys. Maybe they were just going slow for me but if so, they did a pretty good job of acting like it was work :) I've no idea if I will be able to keep that up as I go through more chemo treatments but I'm not thinking about that right now. Just enjoying the after glow of a good, hard ride on the bike in the beautful sunshine with good friends to push each other along.
Monday, March 29, 2010
Vegan Week 3, Tumor Shrinkage, and Life in Motion (by Susan)
We have stuck it out being vegan for three weeks now (well, actually, three and a half weeks). Next Wednesday our trial month will be up. How is it going? On the plus side, we have found lots of interesting things to eat and have had some really great meals. We have now embraced the new four food groups: fruits, vegetables, legumes, and grains. Even the milk we drink is "plant milk" - either soy milk, rice milk, or almond milk. With the bread maker and the rice cooker we have been able to try lots of interesting grains - barley, brown rice, bulgur, whole wheat, corn, etc. We think we smell better (no kidding!) and our sense of smell has definitely improved. Don't ask me why - I mentioned this earlier and I have no idea why it should be, but I can definitely smell things from really far away (like people's laundry detergent on their clothes). We have found out about lots of vegan celebrities and athletes who will tell you how great it is. George and I have both noticed how we can really taste the deliciousness of fresh vegetables and fruits - no joke! Also we both feel lighter. On the negative side, we have had some meat and dairy cravings ( I broke down and had a bite of salmon that they were grilling in Whole Foods on Saturday. It tasted WONDERFUL but by stomach did not like it later.) I have heard that these will go away after about 3 months. Also, I have had to do a lot more planning about what we will eat, and eating out can be difficult. Some times both of us have been stuck with nothing to eat but french fries (not so good for you) and some insipid, flavorless iceberg lettuce salad. As far as actual health benefits, it's still too early to tell. I now have some really good vegan recipes I can share if anyone is interested.
The really great news this week is that, even after one chemo session, George has been able to feel the tumors in his neck shrinking! This is what it's all about, and it's so exciting to see it happening so fast. He even thought he could breathe a little better without the tumor pressing on his windpipe so much. George has still been able to exercise every day so far - going on some pretty long bike rides, running on the treadmill, and swimming. The main effect we've noticed is that he needs more sleep - he is conking out earlier at night and sleeping later in the mornings. I've been more tired, too, and I have absolutely no excuse (George usually puts me to shame with his energy and fitness level) except that maybe I am having sympathy tiredness.
George and I went for a fairly long bike ride on Sunday - up Left Hand Canyon to Jamestown. I had been feeling very stiff and sore on Sunday morning - I had a backache, a stomach ache, a headache, etc., etc., etc., and had to just make myself get on the bike and have faith that my mood would improve (as I said, George generally puts me to shame in this area). I pulled myself together, then the two of us got out and rode our bikes up Left Hand Canyon - it's a steady climb for about six miles. I just did it and didn't think about anything else and my mood began to improve. In Jamestown we stopped at the little coffee shop there and had the world's worst muffins - I swear, they messed up the recipe. The muffins had a bitter taste of baking soda - just horrible. We were laughing and ended up exchanging the muffin for another one, which was better. We loaded up on more water and began the descent back down the canyon. The ride down is really exhilerating - just like a big long cruising ski run all the way down, with the smell of the pine trees and Left Hand Creek tumbling between boulders and the still snow-covered banks.
Well, the point of this long ramble is that, by the time we got back to the car, I was feeling joyful, my back no longer hurt, and the headache and stomach ache were gone. I asked myself why this should be, and I came up with this philosophy: we are meant to be beings in motion. When you sit around the house, when you just veg out on the couch, you are shutting down your senses and you become depressed. Outside, with the landscape coming at you and the feeling of wind on your skin, your senses are stimulated and you feel alive. You have to take everything in - look at the scenes around you, really notice what is going on - you have to get outside yourself. And I am convinced that this is the way we are meant to be. We are built to process all kinds of stimuli and make quick decisions. When we are sedentary these processors turn inward and go bad. To live is to be in motion - nothing ever stays the same. We are each like a river that never really stops but keeps flowing to stay healthy and clean.
Back to the chemo - Don the chemo nurse told George that if he could keep exercising throughout chemo he would feel better. George had that same experience this week when he was feeling bad from the chemo and then went swimming and felt worlds better. So, we will both work on getting out of the house and doing as many activities as we can without getting too tired. Even if it's just a walk on down days - we'll be out there!
The really great news this week is that, even after one chemo session, George has been able to feel the tumors in his neck shrinking! This is what it's all about, and it's so exciting to see it happening so fast. He even thought he could breathe a little better without the tumor pressing on his windpipe so much. George has still been able to exercise every day so far - going on some pretty long bike rides, running on the treadmill, and swimming. The main effect we've noticed is that he needs more sleep - he is conking out earlier at night and sleeping later in the mornings. I've been more tired, too, and I have absolutely no excuse (George usually puts me to shame with his energy and fitness level) except that maybe I am having sympathy tiredness.
George and I went for a fairly long bike ride on Sunday - up Left Hand Canyon to Jamestown. I had been feeling very stiff and sore on Sunday morning - I had a backache, a stomach ache, a headache, etc., etc., etc., and had to just make myself get on the bike and have faith that my mood would improve (as I said, George generally puts me to shame in this area). I pulled myself together, then the two of us got out and rode our bikes up Left Hand Canyon - it's a steady climb for about six miles. I just did it and didn't think about anything else and my mood began to improve. In Jamestown we stopped at the little coffee shop there and had the world's worst muffins - I swear, they messed up the recipe. The muffins had a bitter taste of baking soda - just horrible. We were laughing and ended up exchanging the muffin for another one, which was better. We loaded up on more water and began the descent back down the canyon. The ride down is really exhilerating - just like a big long cruising ski run all the way down, with the smell of the pine trees and Left Hand Creek tumbling between boulders and the still snow-covered banks.
Well, the point of this long ramble is that, by the time we got back to the car, I was feeling joyful, my back no longer hurt, and the headache and stomach ache were gone. I asked myself why this should be, and I came up with this philosophy: we are meant to be beings in motion. When you sit around the house, when you just veg out on the couch, you are shutting down your senses and you become depressed. Outside, with the landscape coming at you and the feeling of wind on your skin, your senses are stimulated and you feel alive. You have to take everything in - look at the scenes around you, really notice what is going on - you have to get outside yourself. And I am convinced that this is the way we are meant to be. We are built to process all kinds of stimuli and make quick decisions. When we are sedentary these processors turn inward and go bad. To live is to be in motion - nothing ever stays the same. We are each like a river that never really stops but keeps flowing to stay healthy and clean.
Back to the chemo - Don the chemo nurse told George that if he could keep exercising throughout chemo he would feel better. George had that same experience this week when he was feeling bad from the chemo and then went swimming and felt worlds better. So, we will both work on getting out of the house and doing as many activities as we can without getting too tired. Even if it's just a walk on down days - we'll be out there!
Sunday, March 28, 2010
Peter the Power Port and seatbelts - not such a great combination
In the logistics of life, things have been going pretty well so far. The one thing that has been a bit of a drag is that my port is on my upper left chest quadrant right where the driver's side seat belt crosses my chest. It definitely irritates my chest to have the belt rub on my port. I've tried slouching down or sitting tall to get the belt to hit me in a different position but it always seems to slide around until its right on top of the port. After a few minutes of this I start getting a kind of scratchy, skin-is-irritated kind of pain radiating out from the port site. In my normal daily activities I don't have to drive much so this shouldn't be too big a deal. But if I do any big drives this summer I'll have to look into some sort of pad to around the belt to diffuse the pressure.
Lesson of the day - chemo doesn't mean that cars will get out of the way of you and your bike
Yesterday I had another nice life lesson. I got up in the morning determined to ride my bike - had a great sleep (10 hours!) and was definitely feeling the urge to get in a ride. Susan went to the club to do some indoor workouts so I had some time for a ride. But the weather wasn't great - low 40s and really windy. But I managed to get my ass in gear and after bundling up, headed out on the bike. Due the weather I did a shorter ride than usual and definitely felt like I was pushing through jello going upwind. But the wind was coming out of the north and so as I headed down McCaslin into my area of Louisville, I was really flying. Doing about 36 mph on a slight downhill and was really loving having successfully gotten out on a ride when it would have been really easy to bail out. So I cut through a parking lot, see a little sand in the corner and because I'm wanting to not do anything stupid on my bike, I swing wide around the sand. And right into the path of an oncoming car. So I'm thinking to myself "Doesn't this guy know I'm doing chemo and I'm finishing a great bike ride. Get the f* out of my way!" And then I realize he isn't turning, I'm not turning and that in a head on collision between a 17 lb road bike and a 4000 lb full size sedan, the bike isn't going to do so well. So I jump on the brakes, get out of my pedals, put a foot down, kind of swerve around the car and gently acknowledge that yeah, since I was in his lane, the whole thing was kind of my fault.
The funny thing was that I did the same thing when I was about 14 years old on my bike. Cut across a parking lot to beat a traffic light and ran right into a car (again, my fault). So I don't know if it's a good thing that I'm still riding that way on my bike 37 years later or if it means that I'm a dumbass and the universe is trying to teach me a lesson I'm slow to learn. Probably a bit of both.
The funny thing was that I did the same thing when I was about 14 years old on my bike. Cut across a parking lot to beat a traffic light and ran right into a car (again, my fault). So I don't know if it's a good thing that I'm still riding that way on my bike 37 years later or if it means that I'm a dumbass and the universe is trying to teach me a lesson I'm slow to learn. Probably a bit of both.
Thursday, March 25, 2010
82/100
Today was the first day that I've felt kind of "blech". All this week I've been feeling really good but today I was definitely off a bit. Being the analytical geek that I am, I've decided to rank my days on a scale of 1-100.
100 = I just had the best mountain bike ride of my life and cleaned the front side of Hall Ranch (which I've never done)
0 = Dear God, just shoot me now to get me out of this misery
So today was about an 82. I'd say the last few days where in the 90s so this was a bit of a slip. I've heard that day 3 or 4 post chemo administration is usually the low point in the cycle so I wasn't completely surprised to feel a bit off today. By the end of the work day I was definitely feeling a bit whipped. But I thought a little movement in the pool might re-energize me (I got cleared to swim today) so I got over to the pool and got in the water. It definitely helped! My chest still feels a bit funky with my new friend Pete along for the ride but the whole experience of moving through the water and getting my metabolism elevated definitely made me feel better.
Other news - my left arm seems to be slightly swollen, down towards my arm. One of the few serious complications of having a port put in is that you can get a blood clot in the vein they use for the port so I had an ultrasound of my arm done yesterday. Everything looked normal and the surgeon looked at it today and also thought it was OK. Apparently they had to push and pull a bit in my chest to get the port into place correctly so there may be some compression on the vein they used, either from them banging around in my chest or from the inflamed lymph nodes I have in that area. Both of these issues should resolve themselves over the next couple of weeks.
I also got a few games today to keep me occupied if I'm not feeling like exercising. A friend of ours gave me a giant puzzle that's sure to keep me busy for weeks (if not months!) and I also purchased a high end flight simulator for gaming on my home PC. Both will be good distractions although I hope that with spring showing up that I'll be spending a lot of time outside on my bikes and running.
Finally, I got a good pointer from a friend of mine to a blog post about someone recovering from prostrate cancer. There were some good tips in there about pacing your recovery, letting others help you, etc. That last one is tough for me - I really value my sense of competency and being able to do things for myself. It was really, really hard to watch Susan shovel the driveway yesterday and not jump out to help. I guess there's a lesson in there somewhere for me.
I understand that this process will be a marathon and I'm looking to settle into a sustainable rhythm. I've done a lot of endurance sports in my life so hopefully the mentality necessary for those activities (patience, stubbornness, the ability to pace myself) will help with this journey.
100 = I just had the best mountain bike ride of my life and cleaned the front side of Hall Ranch (which I've never done)
0 = Dear God, just shoot me now to get me out of this misery
So today was about an 82. I'd say the last few days where in the 90s so this was a bit of a slip. I've heard that day 3 or 4 post chemo administration is usually the low point in the cycle so I wasn't completely surprised to feel a bit off today. By the end of the work day I was definitely feeling a bit whipped. But I thought a little movement in the pool might re-energize me (I got cleared to swim today) so I got over to the pool and got in the water. It definitely helped! My chest still feels a bit funky with my new friend Pete along for the ride but the whole experience of moving through the water and getting my metabolism elevated definitely made me feel better.
Other news - my left arm seems to be slightly swollen, down towards my arm. One of the few serious complications of having a port put in is that you can get a blood clot in the vein they use for the port so I had an ultrasound of my arm done yesterday. Everything looked normal and the surgeon looked at it today and also thought it was OK. Apparently they had to push and pull a bit in my chest to get the port into place correctly so there may be some compression on the vein they used, either from them banging around in my chest or from the inflamed lymph nodes I have in that area. Both of these issues should resolve themselves over the next couple of weeks.
I also got a few games today to keep me occupied if I'm not feeling like exercising. A friend of ours gave me a giant puzzle that's sure to keep me busy for weeks (if not months!) and I also purchased a high end flight simulator for gaming on my home PC. Both will be good distractions although I hope that with spring showing up that I'll be spending a lot of time outside on my bikes and running.
Finally, I got a good pointer from a friend of mine to a blog post about someone recovering from prostrate cancer. There were some good tips in there about pacing your recovery, letting others help you, etc. That last one is tough for me - I really value my sense of competency and being able to do things for myself. It was really, really hard to watch Susan shovel the driveway yesterday and not jump out to help. I guess there's a lesson in there somewhere for me.
I understand that this process will be a marathon and I'm looking to settle into a sustainable rhythm. I've done a lot of endurance sports in my life so hopefully the mentality necessary for those activities (patience, stubbornness, the ability to pace myself) will help with this journey.
Wednesday, March 24, 2010
Peter the Power Port and Snow Shoveling = Yellow and Black Pectoral
Well, we've now get another data point involving Peter the Power Port. Apparently when you shovel wet, heavy snow with a 4 day old power port in your upper chest, it results in a very interesting set of bruising on your pectoral. I shifted my normal shoveling orientation so that I wasn't lifting the snow with my left arm but apparently whatever I did either drove out a lot of bruising that was inside my upper chest muscles to the surface or I've just ripped open my chest a little bit. The bruising was definitely grey and yellow which to me means old blood. So I'm thinking that I was just flushing old gunk out of my upper chest from the port procedure on Friday and that this is a step forward! But my wing man/management team has put me on the IR wrt to snow shoveling for a while. I've got a call into the thoracic surgeon this morning to get a quick insight on whether they want to look at my chest today or wait for my (already scheduled) post op checkup tomorrow.
On the bright side, I had a great night's sleep last night. Feeling really chipper this morning. I drank a TON of water yesterday to help flush everything from my system so I will continue to do that today.
More news as it happens!
On the bright side, I had a great night's sleep last night. Feeling really chipper this morning. I drank a TON of water yesterday to help flush everything from my system so I will continue to do that today.
More news as it happens!
Tuesday, March 23, 2010
First Day post-chemo: Geo is doing great! (by Susan)
I would have to say that so far George is doing great with the chemo (granted, it is only day 2 of 168 days). But so far the nausea meds have been working, he has been eating and drinking normally, and even got in a workout on the treadmill today before our big March snowstorm started blowing in. No kidding - we already have about six inches of snow here in Louisville, with more supposed to fall tonight and tomorrow.
He is looking quite healthy as I am sitting here next to him. We played guitars tonight and butchered "Some of Shelly's Blues" and "Angel from Montgomery" (that was mostly me butchering it). Now he is laughing at a pond hockey video he found on Hulu. We also had a great vegan dinner of lentil stew, couscous, and steamed kale - how's THAT for healthy? So, if music, laughter, exercise, and good food have anything to do with it, we are already giving this cancer an ass-kicking!
He is looking quite healthy as I am sitting here next to him. We played guitars tonight and butchered "Some of Shelly's Blues" and "Angel from Montgomery" (that was mostly me butchering it). Now he is laughing at a pond hockey video he found on Hulu. We also had a great vegan dinner of lentil stew, couscous, and steamed kale - how's THAT for healthy? So, if music, laughter, exercise, and good food have anything to do with it, we are already giving this cancer an ass-kicking!
Monday, March 22, 2010
Pete the Power Port performs perfectly - good alliteration and 1 down, 11 chemo sessions go to
Had my first chemo session this morning. Wildly anti-climatic, boring, asymptomatic and easy. I rode my bike over and got to the place 20 minutes early, so got my weight, blood pressure and temperature taken (all normal).
Then chatted with the oncologist briefly. One thing I had forgot to ask him last week was to get his opinion on how long the disease had been chewing away at me. His estimate is about a year. So - I can use this as the perfect excuse for any less than perfect athletic performance in 2009! Blowing up in the middle of the night on the eRock laps - cancer caused! Getting 6th out of 7th in my age group at the Leadville triathlon - Hodkgin's induced! A great cover story I will milk for all its worth.
Then back into the lab. A pretty wild scene. This place has about 32 big lazy boy chairs where you get your chemo delivered to you. It's in a big, bright, airy room with floor to ceiling windows looking west to the Flatirons and Indian Peaks. When we first got there the place was hopping. There were about 25 patients all getting their chemo junk. Really pretty much a chemo production line. Come in, get your chemo, go home. Some of the people looked fairly normal but a bunch of them looked pretty beat up. No hair, huddled under blankets, half asleep. Hopefully everybody there this morning will get better but one look at the room and you know there is some serious illness being addressed here. Lots of support folks also present - friends, families, volunteers handing out cookies, etc. We managed to snag a window seat and got ready for the treatment. I had my Kindle with a new junky sci-fi book downloaded and my Blackberry to keep me in touch with the cyber world.
First step - IV anti-nausea drugs, which should work for 3-5 days. My first thought was that I should now try to find an open amusement park and take about 30 rides on the teacup ride - I don't think I could puke now if I tried. The last time I was on that ride I think Caitlyn was about 6 and I almost lost my cookies. So now I am chemically enhanced to be nausea resistant.
Next, a port check to make sure the line is clear. I get the needle into the port - no pain at all! And I'm getting good flow from the port. So Pete is definitely online and ready to earn his paycheck.
Next, I get the Adriamycin. This is the stuff that:
Next, I get a test for a Bleomycin allergic reaction. This rarely happens but if it does, it means that you can't get Bleo. They inject a bit into the fat in my arm near my tricep. Hey, I don't have any fat on my tricep! Although the nurse agrees I have fairly little fat in my arm, it gets in ok. This takes about 30 minutes to diagnose so they start the Vinblastine next. This has a nice, giant red label on it saying that if you get this drug administered into your spinal column, it will kill you. Nice... So we agree that we won't put it into my spinal column. This is also the bad boy that will probably nuke my sperm. So no more direct Geo descendants, I guess...
Next, the Dacarbazine. This is an IV drip that takes about an hour to go in and is delivered with a solution that has alcohol in it. This is the one med I got that gave me a bit of a reaction. By the end of it, I had to pee and my head felt a bit full - kind of like I feel sometimes after having a red wine with a lot of tannins in it. Not very noticeable and not at all a problem.
Through all of this, Susan is right by my side, supporting me. She's such an engaged wing-man that by the end of it, she's getting some sympathy nausea feelings. I know it's really tough on her to see me go through all of this and I was reassuring her that I really did feel fine and that everything was going fine. But I know it was tough on her.
My Bleo allergy reaction was negative, so finally they push the Bleo. I did pee after the Dacarbazine was done and in fact my pee was kind of pink. So it's sure a good thing they let you know ahead of time about this. I would certainly have been freaked out if I had seen this and not known of this side effect ahead of time.
And with that, I'm done. Total time was about 2 1/2 hours. Here's a pic of me doing my casual chemo-thing:
We'll see if I'm such a big talker after several weeks of this. But I couldn't have asked for a more carefree, casual morning so I'm super-psyched about that. Everything worked OK and I now have nasty chemo drugs coursing through my system, destroying all these crazy cells that have decided to grow in my lymphatic system. Both the doc and the nurse told me that very frequently with Hodkin's patients they see pretty dramatic tumor size reduction in the first couple of sessions so I'm really looking forward to seeing that happen.
And now for the one nasty thing I did today. We stopped to get gas on the way home and while we were doing that, I suddenly said to Susan: "Wow, I feel sort of dizzy and fatigued." To which she of course immediately went into super wing man mode. "Get in the car, I'll finish here, let me help you get into the car." To which I started to laugh and said "Ha! Only kidding. Feel fine. Just joking.." Which seemed really funny to me but as you can imagine was a pretty shitty thing for her. She gently let me know (with some combination of shouting and giant, puppy dog eyes) that this wasn't a particularly funny joke and not to do that again. So, note to self - no more jokes about feeling bad, at least not directed at my super wing-man.
So a successful day one in the treatment! One day down, 167 to go. Wow, that second number looks pretty big. Maybe I'll think about it as 1 treatment down, 11 to go. Yeah, that feels better. Onwards to health!!!
Then chatted with the oncologist briefly. One thing I had forgot to ask him last week was to get his opinion on how long the disease had been chewing away at me. His estimate is about a year. So - I can use this as the perfect excuse for any less than perfect athletic performance in 2009! Blowing up in the middle of the night on the eRock laps - cancer caused! Getting 6th out of 7th in my age group at the Leadville triathlon - Hodkgin's induced! A great cover story I will milk for all its worth.
Then back into the lab. A pretty wild scene. This place has about 32 big lazy boy chairs where you get your chemo delivered to you. It's in a big, bright, airy room with floor to ceiling windows looking west to the Flatirons and Indian Peaks. When we first got there the place was hopping. There were about 25 patients all getting their chemo junk. Really pretty much a chemo production line. Come in, get your chemo, go home. Some of the people looked fairly normal but a bunch of them looked pretty beat up. No hair, huddled under blankets, half asleep. Hopefully everybody there this morning will get better but one look at the room and you know there is some serious illness being addressed here. Lots of support folks also present - friends, families, volunteers handing out cookies, etc. We managed to snag a window seat and got ready for the treatment. I had my Kindle with a new junky sci-fi book downloaded and my Blackberry to keep me in touch with the cyber world.
First step - IV anti-nausea drugs, which should work for 3-5 days. My first thought was that I should now try to find an open amusement park and take about 30 rides on the teacup ride - I don't think I could puke now if I tried. The last time I was on that ride I think Caitlyn was about 6 and I almost lost my cookies. So now I am chemically enhanced to be nausea resistant.
Next, a port check to make sure the line is clear. I get the needle into the port - no pain at all! And I'm getting good flow from the port. So Pete is definitely online and ready to earn his paycheck.
Next, I get the Adriamycin. This is the stuff that:
- Gives you nausea
- Gives you fatigue
- Can make you lose your hair
- Turns your pee pink
- Can cause heart damage if your lifetime dose gets too large. (They will monitor me to make sure this doesn't happen. My planned dosage is significantly less than the lifetime dose so I should be fine)
- Can cause tissue death if it gets out of your veins.
Next, I get a test for a Bleomycin allergic reaction. This rarely happens but if it does, it means that you can't get Bleo. They inject a bit into the fat in my arm near my tricep. Hey, I don't have any fat on my tricep! Although the nurse agrees I have fairly little fat in my arm, it gets in ok. This takes about 30 minutes to diagnose so they start the Vinblastine next. This has a nice, giant red label on it saying that if you get this drug administered into your spinal column, it will kill you. Nice... So we agree that we won't put it into my spinal column. This is also the bad boy that will probably nuke my sperm. So no more direct Geo descendants, I guess...
Next, the Dacarbazine. This is an IV drip that takes about an hour to go in and is delivered with a solution that has alcohol in it. This is the one med I got that gave me a bit of a reaction. By the end of it, I had to pee and my head felt a bit full - kind of like I feel sometimes after having a red wine with a lot of tannins in it. Not very noticeable and not at all a problem.
Through all of this, Susan is right by my side, supporting me. She's such an engaged wing-man that by the end of it, she's getting some sympathy nausea feelings. I know it's really tough on her to see me go through all of this and I was reassuring her that I really did feel fine and that everything was going fine. But I know it was tough on her.
My Bleo allergy reaction was negative, so finally they push the Bleo. I did pee after the Dacarbazine was done and in fact my pee was kind of pink. So it's sure a good thing they let you know ahead of time about this. I would certainly have been freaked out if I had seen this and not known of this side effect ahead of time.
And with that, I'm done. Total time was about 2 1/2 hours. Here's a pic of me doing my casual chemo-thing:
And now for the one nasty thing I did today. We stopped to get gas on the way home and while we were doing that, I suddenly said to Susan: "Wow, I feel sort of dizzy and fatigued." To which she of course immediately went into super wing man mode. "Get in the car, I'll finish here, let me help you get into the car." To which I started to laugh and said "Ha! Only kidding. Feel fine. Just joking.." Which seemed really funny to me but as you can imagine was a pretty shitty thing for her. She gently let me know (with some combination of shouting and giant, puppy dog eyes) that this wasn't a particularly funny joke and not to do that again. So, note to self - no more jokes about feeling bad, at least not directed at my super wing-man.
So a successful day one in the treatment! One day down, 167 to go. Wow, that second number looks pretty big. Maybe I'll think about it as 1 treatment down, 11 to go. Yeah, that feels better. Onwards to health!!!
Sunday, March 21, 2010
A weekend of great support from friends and family
Friday night I had a good chat with a friend of mine that went through cancer last year. It really is nice to be able to talk to people who have been through a similar experience. The one thing I'm starting to realize is that no one gets through this experience unchanged. It can change family relationships, it can change your own worldview and very frequently it can change your body. Surgery, radiation, chemotherapy can all be part of the mix based on what specific type of illness you have. In many cases your body is never the same. Sometimes you have to lose parts of your body to get back to health, sometimes you have to accept treatments that themselves bring risk of future illness. It's all a pretty tough road and it's really great to talk to folks that have gone through it and come out the other side.
On Saturday I got a nice care package from Susan's aunt. Helene is 89 years old and one of the things she does is crochet prayer shawls for people that are going through hardship in their lives. She sent me a prayer shawl that she hand made and it was really amazing to get such a personal piece of love and caring from a pretty distant relative. I draped it over my legs last night while watching a movie at home and could definitely feel the loving energy. I never thought that I would look good in a lavender, crocheted shawl but the universe is always full of surprises, I guess :)
Today Susan and I got out for another nice weekend ride. 26.5 miles from our house over to Eldo then through South Boulder and East Boulder on bike paths and then back up Baseline and South Boulder road back to the L-town casa. We've both signed up for the Copper Triangle (82 miles, 6500 vertical feet in one day of riding in early August). I suspect I may be on the support team this year given that I'll still be doing my chemo then. But whether I ride it or just support Susan I hope to be able to get in some good training rides with her this spring. It was really a beautiful day and it was so nice to be out on the bike enjoying the day and seeing everyone else out on the road. We ran into a nice family from Belgium and helped point them to some good trails in South Boulder. Told them that our son was in Eindhoven which instantly created a bit of a bond between us.
Here's a picture of the Baseline Reservoir from our ride today:
And one of Susan on the ride:
Tomorrow the weather is supposed to be pretty nice so I think I'll ride my bike to chemo and meet Susan there. Kind of symbolic I know but I like the idea of making the statement that I'm going to try and keep my lifestyle as close to normal as I can through this experience.
Finally, a quick update on Peter the Power Port. The incision is healing up nicely and the port itself is looking good. No sign of infection and the skin around the site is looking good. I do feel like I've got a bit of a man boob now and Susan and I were joking that maybe I should get a one cup bra to support my new little friend. What's a cup size < A cup? Do they go in reverse size for A cups (i.e. more letters = a smaller cup size? ) So I would need a single cup bra in size AAAA. I haven't tried any push-ups yet and I do some feel general soreness in my left upper chest but no pain to speak of. I took 2 Advil before I went to bed on Friday night but no pain meds since. So I think Pete is set to go - tomorrow he starts to earn his keep and will hopefully route all these nasty drugs directly into my superior vena cava and save the rest of my veinous system from any abuse.
I've also gotten a couple of nice texts from folks this evening getting me psyched for the start of chemo tomorrow. Through all of this I feel like I'm building up a huge karmic debt to all my friends and family. Let me just put out a blanket statement now that if any of you guys have the bad luck to go through something like this in the future, please feel free to ask me for support. I'll get healthy this spring and summer and then be open for business as cancer survivor support guy for anyone who needs it...
On Saturday I got a nice care package from Susan's aunt. Helene is 89 years old and one of the things she does is crochet prayer shawls for people that are going through hardship in their lives. She sent me a prayer shawl that she hand made and it was really amazing to get such a personal piece of love and caring from a pretty distant relative. I draped it over my legs last night while watching a movie at home and could definitely feel the loving energy. I never thought that I would look good in a lavender, crocheted shawl but the universe is always full of surprises, I guess :)
Today Susan and I got out for another nice weekend ride. 26.5 miles from our house over to Eldo then through South Boulder and East Boulder on bike paths and then back up Baseline and South Boulder road back to the L-town casa. We've both signed up for the Copper Triangle (82 miles, 6500 vertical feet in one day of riding in early August). I suspect I may be on the support team this year given that I'll still be doing my chemo then. But whether I ride it or just support Susan I hope to be able to get in some good training rides with her this spring. It was really a beautiful day and it was so nice to be out on the bike enjoying the day and seeing everyone else out on the road. We ran into a nice family from Belgium and helped point them to some good trails in South Boulder. Told them that our son was in Eindhoven which instantly created a bit of a bond between us.
Here's a picture of the Baseline Reservoir from our ride today:
And one of Susan on the ride:
Tomorrow the weather is supposed to be pretty nice so I think I'll ride my bike to chemo and meet Susan there. Kind of symbolic I know but I like the idea of making the statement that I'm going to try and keep my lifestyle as close to normal as I can through this experience.
Finally, a quick update on Peter the Power Port. The incision is healing up nicely and the port itself is looking good. No sign of infection and the skin around the site is looking good. I do feel like I've got a bit of a man boob now and Susan and I were joking that maybe I should get a one cup bra to support my new little friend. What's a cup size < A cup? Do they go in reverse size for A cups (i.e. more letters = a smaller cup size? ) So I would need a single cup bra in size AAAA. I haven't tried any push-ups yet and I do some feel general soreness in my left upper chest but no pain to speak of. I took 2 Advil before I went to bed on Friday night but no pain meds since. So I think Pete is set to go - tomorrow he starts to earn his keep and will hopefully route all these nasty drugs directly into my superior vena cava and save the rest of my veinous system from any abuse.
I've also gotten a couple of nice texts from folks this evening getting me psyched for the start of chemo tomorrow. Through all of this I feel like I'm building up a huge karmic debt to all my friends and family. Let me just put out a blanket statement now that if any of you guys have the bad luck to go through something like this in the future, please feel free to ask me for support. I'll get healthy this spring and summer and then be open for business as cancer survivor support guy for anyone who needs it...
Friday, March 19, 2010
Details of my new port (warning, some slightly gross pictures)
As Susan just posted, my port installation went in smoothly. I did ask the doctor if he had the wireless base station ready to hook into the port to which he gave me a slightly weird look. Apparently thoracic surgeons are not as up on the wonders of wireless computing as those of us in the software industry. Go figure...
I also had a nice conversation with the anesthesiologist before the surgery. When I had the excisional biopsy done, I had several days (over a week) of mild symptoms from the sedatives (dizziness, spaciness, etc.) which I was not anxious to repeat. So even though this was monitored sedation rather than a general, he said that he could dial back the sedation quite a bit. I don't remember much after I got into the OR but I really feel a lot more chipper than after I had the general. Hopefully some good walks over the weekend will flush the meds out of my system and I'll be ready for chemo on Monday with a clear head.
So on to the details of the port. I had talked to the surgeon about NOT having a power port (which is a bigger device that allows the injection of relatively high pressure fluids that are given when you get a PET scan). I thought we had agreed on a lower profile port but when he came into the room today, everything had been configured to use a power port. So of course, I had to call him on it (after all, I am the customer and he is simply a lowly vendor!) His response was that for bigger guys he likes the power port. So that seemed ok.
Next issue - hurry up and wait. We were at the hospital at 11:30, right on time. We got processed into our prep room quickly and then had to wait there for over 90 minutes. By the end of the waiting I was telling those guys that I was a consultant and that I was going to start charging them by the hour for my time. Which didn't impress them in the least. I did bring my Kindle and got some nice recreational reading done (junky sci-fi) and the nurses were all interested in seeing the Kindle.
So finally the port procedure got started and from what I could tell, was super smooth. I remember being in the OR chatting with the nurses about stuff and then in the recovery room with a new bump on my chest. Everything went smoothly and I'm now ready for chemo!
And finally, the before and after pictures. Here is the upper left hand quadrant of my chest at 11:15 this morning:
It really does look a bit like an alien getting ready to erupt from my chest, doesn't it? The bump on the bottom of the picture is port. The red dot in the middle is from where they did a sample draw of blood to make sure it's in the vein OK. Attached to the port is a line that's about 10 centimeters long that goes towards the middle of my chest into the superior vena cava right at the entrance to my heart. The seam above the bump is where they pulled back the skin to insert the port and to inject the line into the vein. They used a kind of super glue on my skin so I don't have any stitches that need to get removed. Pretty cool!
After a bit of time in the recovery room we were cleared for the short ride home. Stopped at Dairy Queen for my favorite pre-chemo weight boosting tool (blizzard with heath bar mixed in). Got home and realized - oops - that perhaps I had been discharged a bit too quickly. Still had some hardware in my arm:
Susan managed to get that out no problem and I'm now set for a fun weekend of activities! I know that some of you were sending extra ju-ju my way today so thanks for that. The procedure certainly went very smoothly and I feel pretty good. So thanks to my various wing men (wing-women?) for your support. One step closer to getting better!!!
I also had a nice conversation with the anesthesiologist before the surgery. When I had the excisional biopsy done, I had several days (over a week) of mild symptoms from the sedatives (dizziness, spaciness, etc.) which I was not anxious to repeat. So even though this was monitored sedation rather than a general, he said that he could dial back the sedation quite a bit. I don't remember much after I got into the OR but I really feel a lot more chipper than after I had the general. Hopefully some good walks over the weekend will flush the meds out of my system and I'll be ready for chemo on Monday with a clear head.
So on to the details of the port. I had talked to the surgeon about NOT having a power port (which is a bigger device that allows the injection of relatively high pressure fluids that are given when you get a PET scan). I thought we had agreed on a lower profile port but when he came into the room today, everything had been configured to use a power port. So of course, I had to call him on it (after all, I am the customer and he is simply a lowly vendor!) His response was that for bigger guys he likes the power port. So that seemed ok.
Next issue - hurry up and wait. We were at the hospital at 11:30, right on time. We got processed into our prep room quickly and then had to wait there for over 90 minutes. By the end of the waiting I was telling those guys that I was a consultant and that I was going to start charging them by the hour for my time. Which didn't impress them in the least. I did bring my Kindle and got some nice recreational reading done (junky sci-fi) and the nurses were all interested in seeing the Kindle.
So finally the port procedure got started and from what I could tell, was super smooth. I remember being in the OR chatting with the nurses about stuff and then in the recovery room with a new bump on my chest. Everything went smoothly and I'm now ready for chemo!
And finally, the before and after pictures. Here is the upper left hand quadrant of my chest at 11:15 this morning:
And here is my left upper chest area now:
It really does look a bit like an alien getting ready to erupt from my chest, doesn't it? The bump on the bottom of the picture is port. The red dot in the middle is from where they did a sample draw of blood to make sure it's in the vein OK. Attached to the port is a line that's about 10 centimeters long that goes towards the middle of my chest into the superior vena cava right at the entrance to my heart. The seam above the bump is where they pulled back the skin to insert the port and to inject the line into the vein. They used a kind of super glue on my skin so I don't have any stitches that need to get removed. Pretty cool!
After a bit of time in the recovery room we were cleared for the short ride home. Stopped at Dairy Queen for my favorite pre-chemo weight boosting tool (blizzard with heath bar mixed in). Got home and realized - oops - that perhaps I had been discharged a bit too quickly. Still had some hardware in my arm:
Port Success! (by Susan)
We are just back from the hospital where George had his port put in today. Everything went well and things look good. George is still acting slightly weird from the meds and is not cleared for typing at the moment. They gave him a "twilight sleep" anesthetic instead of a general. They used Versed so he doesn't remember a thing. When he woke up he got the nurse to come out and tell me that he was talking about sex, which I totally believed.
"That's just what he did the last time!" I said.
"Is that so? Well, that is strange," said the nurse, trying not to laugh.
Then when I got back to the recovery room sha admitted that George had put her up to it and they had a good laugh on me.
So, now George has a bump on his chest - pictures to come later. He is all set to start chemo on Monday and get the recovery process going!
"That's just what he did the last time!" I said.
"Is that so? Well, that is strange," said the nurse, trying not to laugh.
Then when I got back to the recovery room sha admitted that George had put her up to it and they had a good laugh on me.
So, now George has a bump on his chest - pictures to come later. He is all set to start chemo on Monday and get the recovery process going!
Thursday, March 18, 2010
Going Vegan: Week 2 (by Susan)
As detailed in George's post today, George and I had a great day skiing at Winter Park. It was good to just get out and enjoy the fresh mountain air, the snow, and the sunshine, and of course the company of the fabulous Geo! Tomorrow George goes in for his port surgery and then he starts chemo on Monday. We're both a little apprehensive - wondering how it will go and how he will feel. This last week we both went through a little anger phase, just being frustrated with the universe for handing us this thing to deal with. And then there are the interminable logistics of everything - waiting around in doctors' offices, George getting poked, prodded, and tested in every conceivable manner. This is absolutely NOT the way we had intended spending 2010. So it was good to have a little vacation from everything today and just have fun.
I realize that I have embraced the vegan cooking thing just as something to DO that is constructive and that could possibly help both of us. I think as a caretaker/spouse you can feel so helpless when you see someone you love going through these challenges, and this feels like an action I can take.
So, my personal diet story - after two weeks on the vegan diet (OK - I cheated once and had cheese) - I feel GREAT! The initial cravings and stomach upset have subsided, and now I feel very satisfied with the meals I am eating. I feel lighter and have a lot of energy. I have also noticed that my senses of taste and smell has become stronger - is that crazy? I am actually enjoying my food more, because I feel like I can really taste the flavors of fresh vegatables, fruits, legumes, and grains. Maybe animal protein puts a coating on everything, including your taste buds. I am figuring out how to make lentil stew in the crock pot and flawless rice in our brand new rice cooker (see picture below). Rice cooking at this altitude has always been a challenge - rice comes out mushy on the outside and hard on the inside. But it came out perfectly in the rice cooker! Maybe I will try to make vegan sopri in it (ask my Mom about my trials and tribulations making sopri, our traditional Italian Christmas dish, at high altitude). Maybe by the time George is done with chemo I will be a fabulous vegan cook!
I realize that I have embraced the vegan cooking thing just as something to DO that is constructive and that could possibly help both of us. I think as a caretaker/spouse you can feel so helpless when you see someone you love going through these challenges, and this feels like an action I can take.
So, my personal diet story - after two weeks on the vegan diet (OK - I cheated once and had cheese) - I feel GREAT! The initial cravings and stomach upset have subsided, and now I feel very satisfied with the meals I am eating. I feel lighter and have a lot of energy. I have also noticed that my senses of taste and smell has become stronger - is that crazy? I am actually enjoying my food more, because I feel like I can really taste the flavors of fresh vegatables, fruits, legumes, and grains. Maybe animal protein puts a coating on everything, including your taste buds. I am figuring out how to make lentil stew in the crock pot and flawless rice in our brand new rice cooker (see picture below). Rice cooking at this altitude has always been a challenge - rice comes out mushy on the outside and hard on the inside. But it came out perfectly in the rice cooker! Maybe I will try to make vegan sopri in it (ask my Mom about my trials and tribulations making sopri, our traditional Italian Christmas dish, at high altitude). Maybe by the time George is done with chemo I will be a fabulous vegan cook!
pre-port fun
My head cheer leader and all around wingman Susan lined up a great day for us today, in prep for heading into some more body abuse tomorrow.
First, we managed to catch up with Ross over video-Skype (our son who lives in Eindhoven, The Netherlands). It's so nice to have the video so we can all see each other. He definitely got a hoot out of my haircut. He's also recently got a hair cut so Susan was excited to see that her hair is now longer than his (which has not always been the case). Heard some new music that he and Maruja have been developing. Awesome stuff! Hopefully they will find a way to get their music published and will have great success - sure sounded good to our (totally objective) ears.
Then up to the Jane for some spring skiing. No traffic (yeah!), easy parking (even at 10:30), no lift lines, sunny skies and warm (46F at the base). The snow was old and not awesome but certainly ski-able. We then had a nice lunch at the Club Car restaurant. I've been skiing the Jane for about 15 years and have never actually had lunch at the restaurant so that was a first for us. Here's a pic of me enjoying a post lunch stretch:
After another few runs we headed back home (again, no traffic. Boy, I'm sold on mid-week skiing!!!)
Then, a little appliance high. As part of our move to eat vegan Susan bought a pressurized rice cooker which showed up today:
Making rice at our altitude is always a bit of a crap-shoot and this rice turned out super-yummy. And then the tofu stir-fry with ginger, beans, carrots, mushrooms, celery and hoisin sauce. Fantastic!!!
We really enjoy these pal-around days. Getting outside, being active and being with Susan really energizes me so this was a great prep for what lies ahead. I'm hopeful that I'll be able to continue to have these types of days as I go through my treatment, albeit probably with a reduced activity level.
Nothing to eat or drink after midnight tonight and I won't get hooked up to an IV until about noon tomorrow. So it will be a dry, long morning! If all goes according to plan this will be the last surgery I'll have as part of getting through this illness. Fingers crossed!
First, we managed to catch up with Ross over video-Skype (our son who lives in Eindhoven, The Netherlands). It's so nice to have the video so we can all see each other. He definitely got a hoot out of my haircut. He's also recently got a hair cut so Susan was excited to see that her hair is now longer than his (which has not always been the case). Heard some new music that he and Maruja have been developing. Awesome stuff! Hopefully they will find a way to get their music published and will have great success - sure sounded good to our (totally objective) ears.
Then up to the Jane for some spring skiing. No traffic (yeah!), easy parking (even at 10:30), no lift lines, sunny skies and warm (46F at the base). The snow was old and not awesome but certainly ski-able. We then had a nice lunch at the Club Car restaurant. I've been skiing the Jane for about 15 years and have never actually had lunch at the restaurant so that was a first for us. Here's a pic of me enjoying a post lunch stretch:
Then, a little appliance high. As part of our move to eat vegan Susan bought a pressurized rice cooker which showed up today:
We really enjoy these pal-around days. Getting outside, being active and being with Susan really energizes me so this was a great prep for what lies ahead. I'm hopeful that I'll be able to continue to have these types of days as I go through my treatment, albeit probably with a reduced activity level.
Nothing to eat or drink after midnight tonight and I won't get hooked up to an IV until about noon tomorrow. So it will be a dry, long morning! If all goes according to plan this will be the last surgery I'll have as part of getting through this illness. Fingers crossed!
Wednesday, March 17, 2010
chomping at the bit
My mood the last couple of days has been one of anticipation. Enough of the diagnostics, enough talking. Let's do this thing! I feel like I'm in a bit of a holding pattern and want to start the real work of getting the chemo and see it start to shrink the tumors. We had a really good meeting with the oncologist on Tuesday and we're locked and loaded on our treatment plan. We talked about expected outcomes, what we'll do if things don't proceed as expected, how much my immune system will be compromised by the chemo, etc.
I'm pretty done with the talking. I can see the way forward and I just want to get the damn thing going! I feel like I've been on the cancer practice field for a month. I want to get out onto the playing field, get the meds in me, see them work on the tumors and deal with whatever side effects come along for the ride.
"Patience, grasshopper" I keep telling myself. There is a rhythm to this, especially when there's so many people and infrastructure involved in my treatment. The rationale part of me knows that things are going along smoothly and so far, so good (in general. Still a bit bummed about that whole 3a thing). But the more primal side of me just wants to jump in the ring with the nasty chemicals and nasty cells and get the cage fight going. Soon, soon!
The other wild thing that's going is I've just been feeling really strong on my bike. Somehow I'm channeling all my pent up "get-well" energy into my bike. Yesterday I felt really strong going up the hill to NCAR and today I climbed the hill on South Boulder road in 2nd gear, averaging about 10.5 mph through the steepest part. Usually in the spring this is definitely a 1st gear hill for me (it's part of my commute to work so I ride it a lot). Today I went up in 2nd gear, felt pretty strong and also felt strong all the way up and down Marshall Rd. Go figure that the winter/early spring I have my best training in the last several years is the time when I get this major illness. I get the sense that the Universe as trickster is having a bit of play with me right now.
Ah, well. Off to list to some good classical music this evening, a ski day tomorrow, then the port goes in on Friday and we start doing this thing for real. Wish me luck in having an uneventful and successful port procedure!
I'm pretty done with the talking. I can see the way forward and I just want to get the damn thing going! I feel like I've been on the cancer practice field for a month. I want to get out onto the playing field, get the meds in me, see them work on the tumors and deal with whatever side effects come along for the ride.
"Patience, grasshopper" I keep telling myself. There is a rhythm to this, especially when there's so many people and infrastructure involved in my treatment. The rationale part of me knows that things are going along smoothly and so far, so good (in general. Still a bit bummed about that whole 3a thing). But the more primal side of me just wants to jump in the ring with the nasty chemicals and nasty cells and get the cage fight going. Soon, soon!
The other wild thing that's going is I've just been feeling really strong on my bike. Somehow I'm channeling all my pent up "get-well" energy into my bike. Yesterday I felt really strong going up the hill to NCAR and today I climbed the hill on South Boulder road in 2nd gear, averaging about 10.5 mph through the steepest part. Usually in the spring this is definitely a 1st gear hill for me (it's part of my commute to work so I ride it a lot). Today I went up in 2nd gear, felt pretty strong and also felt strong all the way up and down Marshall Rd. Go figure that the winter/early spring I have my best training in the last several years is the time when I get this major illness. I get the sense that the Universe as trickster is having a bit of play with me right now.
Ah, well. Off to list to some good classical music this evening, a ski day tomorrow, then the port goes in on Friday and we start doing this thing for real. Wish me luck in having an uneventful and successful port procedure!
Monday, March 15, 2010
Chemo prep - clean teeth, short hair
Another couple of logistics taken care of today. The oncology nurse suggested that I get my teeth cleaned before I start the chemo. When you get your teeth cleaned they kick up some bacteria in your mouth and when your WBCs are getting their ass kicked by the chemo you'd like to avoid any chance of bacteria getting a foothold in your mouth or elsewhere in your body.
So got the teeth cleaned, gums and teeth are fine. One less thing to worry about for the next six months!
Next step - getting the dark locks trimmed down so that if I do start losing my hair it won't be too gross or traumatic. The K-man was my wing man on this outing and also got his mane trimmed down - here's the current look post haircut:
Well, we're probably not going to win any beauty contests but that's the way it goes, I guess. And although I look like a pipsqueak in this picture, I am a bit over 6' so that gives you a sense for Kyle's height these days!
So got the teeth cleaned, gums and teeth are fine. One less thing to worry about for the next six months!
Next step - getting the dark locks trimmed down so that if I do start losing my hair it won't be too gross or traumatic. The K-man was my wing man on this outing and also got his mane trimmed down - here's the current look post haircut:
Stage 3A - Damn, crap, argh...
Talked to my oncologist yesterday. (And how's that for cool - a doctor that calls you on a Sunday afternoon because he knows you're anxious about test results.) Looks like the PET scan shows that I have a couple of nodes below my diaphragm (in addition to the nodes in my neck and thorax) that are not happy. This qualifies me as Stage 3A, which means I'll get 6 months of chemo, not 4.
Shit. I was really hoping for a Stage 2A diagnosis. That would mean four months of chemo instead of six and would indicate that the creeping crud that's in my immune system hadn't spread as far. Statistically the survival rates for Stage 2 vs. early Stage 3 aren't much different so at some level this doesn't really mean much. But...
I felt like I failed the staging test. And I hate failing tests! So I was down for a bit yesterday afternoon. Had some private man tears and then got back on the "we'll get through this fine" horse and am ready to attack the week.
So now the good news. Bone marrow came back clean which is a sign that the disease hasn't progressed into my bone marrow. This is good in terms of how far the disease has progressed and also a good sign in terms of how I'll tolerate chemo. The chemo blasts your white blood cells and your bone marrow makes WBCs so having health bone marrow will make the chemo a lot more bearable. The biggest single reason that chemo gets interrupted is that a person's WBC count is too low so they can't dose you with the chemo for fear that you'll get sick from some opportunistic infection.Another good news item is that the tumors in my chest are small enough that they don't qualify for radiation after the chemo. So one treatment avoided!
The oncologist was pretty upbeat saying that this was all pretty good news. Heart is ok, lungs are ok, bone marrow is clear. Tomorrow I'll go in and look at the scans in more detail.
Shit. I was really hoping for a Stage 2A diagnosis. That would mean four months of chemo instead of six and would indicate that the creeping crud that's in my immune system hadn't spread as far. Statistically the survival rates for Stage 2 vs. early Stage 3 aren't much different so at some level this doesn't really mean much. But...
I felt like I failed the staging test. And I hate failing tests! So I was down for a bit yesterday afternoon. Had some private man tears and then got back on the "we'll get through this fine" horse and am ready to attack the week.
So now the good news. Bone marrow came back clean which is a sign that the disease hasn't progressed into my bone marrow. This is good in terms of how far the disease has progressed and also a good sign in terms of how I'll tolerate chemo. The chemo blasts your white blood cells and your bone marrow makes WBCs so having health bone marrow will make the chemo a lot more bearable. The biggest single reason that chemo gets interrupted is that a person's WBC count is too low so they can't dose you with the chemo for fear that you'll get sick from some opportunistic infection.Another good news item is that the tumors in my chest are small enough that they don't qualify for radiation after the chemo. So one treatment avoided!
The oncologist was pretty upbeat saying that this was all pretty good news. Heart is ok, lungs are ok, bone marrow is clear. Tomorrow I'll go in and look at the scans in more detail.
Sunday, March 14, 2010
Life insurance is a weird thing
Earlier this fall Susan and I did some financial planning and as a result of that, we decided that I should up my life insurance. That process started in January as sort of a background task; like making sure you file your tax returns on time or something. After my diagnosis and the forced consideration of my mortality, the whole idea of life insurance became a bit more meaningful. I've been worried that the life insurance would be denied because of my illness. However, this week we found out that the increased life insurance had been approved.
So then you start to wonder how you should feel about this. "Oh yeah, my family will get more money when I die!" gives me a decidedly mixed emotion. Of course I'm sure hoping that this policy doesn't get used for another 30 years or so. I've finally decided that it does indeed feel a bit comforting to know that we have this resource available to us. One less thing to worry about. It's easy to think about life insurance and just check off the appropriate box on a form when you're healthy. When you get a serious illness the whole life insurance thing becomes a bit more intense and dark.
So then you start to wonder how you should feel about this. "Oh yeah, my family will get more money when I die!" gives me a decidedly mixed emotion. Of course I'm sure hoping that this policy doesn't get used for another 30 years or so. I've finally decided that it does indeed feel a bit comforting to know that we have this resource available to us. One less thing to worry about. It's easy to think about life insurance and just check off the appropriate box on a form when you're healthy. When you get a serious illness the whole life insurance thing becomes a bit more intense and dark.
Saturday, March 13, 2010
A long week, a beautiful day...
This week has been pretty grueling in terms of health care interactions. I had six different appointments this week, spread across Monday-Thursday. Drilling bone marrow out of my hip, consultations, scans, measuring... By the end of the week I was pretty ready for the weekend. I snapped a bit at one of my appointments. My GP's nurse wanted to weigh me (usually a rhetorical question: "Can I get your weight?"). To which I replied: "Nope. I've been weighed about 5 times in the last week by you guys, I've weighed myself twice (after swim workouts). My weight hasn't fluctuated more than a pound through all those weigh-ins and I don't feel like taking my shoes off and getting up on the f__king scale again. " Well, I didn't f-bomb her but I sure felt like it. A bit of rebellion, eh? I am just some kind of wild man, bucking the system, sticking it to The Man!
Anyway, a pretty normal work day on Friday (albeit one with 6 hours of meetings, yuck). Then, the good stuff: had a really nice vegan dinner last night with Susan at a local restaurant and a good sleep last night. This morning we went on an absolutely beautiful ride in Erie and Lafayette. Crystal clear blue sky, sunny, temp in the high 50s. We did a pretty mellow ride, around 14 miles through neighborhoods. It felt really good to get out on the bike and enjoy the nice weather and feel the spring energy as everyone was out with their families enjoying the nice weather.
Tonight we have some dear friends bringing over a vegan dinner and tomorrow we're thinking about getting in a day of skiing.
I also did a guided meditation today, thinking about beautiful white light streaming through my body, making all my cells happy and healthy. One thing that has been bothering me a bit since my neck surgery is that my throat feels a bit swollen and I've been coughing a fair amount. So during the mediation I focused on my throat swelling going down and being able to breathe and swallow easily. After the meditation I definitely felt more open in my throat which was a nice positive feedback from the meditation. I will try to do more meditating going forward as I think that can be a really good way to help my body heal itself...
Anyway, a pretty normal work day on Friday (albeit one with 6 hours of meetings, yuck). Then, the good stuff: had a really nice vegan dinner last night with Susan at a local restaurant and a good sleep last night. This morning we went on an absolutely beautiful ride in Erie and Lafayette. Crystal clear blue sky, sunny, temp in the high 50s. We did a pretty mellow ride, around 14 miles through neighborhoods. It felt really good to get out on the bike and enjoy the nice weather and feel the spring energy as everyone was out with their families enjoying the nice weather.
Tonight we have some dear friends bringing over a vegan dinner and tomorrow we're thinking about getting in a day of skiing.
I also did a guided meditation today, thinking about beautiful white light streaming through my body, making all my cells happy and healthy. One thing that has been bothering me a bit since my neck surgery is that my throat feels a bit swollen and I've been coughing a fair amount. So during the mediation I focused on my throat swelling going down and being able to breathe and swallow easily. After the meditation I definitely felt more open in my throat which was a nice positive feedback from the meditation. I will try to do more meditating going forward as I think that can be a really good way to help my body heal itself...
Thursday, March 11, 2010
I have an Rx to be happy...
I touched base with my GP today, who I know socially (our sons went to K-12 together). It was good to chat with him over all the things that have happened in the 3 weeks since I've been diagnosed.
He confirmed that I was doing all the right stuff and that the team I've put together is a good set of specialists. The most interesting thing he said though was that in his experience the patients that have the most trouble are the ones that give into depression. In the work I have ahead of me, my body has to do two things well - get rid of cancer cells and then recover from the onslaught of the chemo. He's seen patients have ups and downs and then get stuck in the downs and just really get depressed. In his experience, this has a markedly negative effect on both the efficacy of the chemo and the patient's ability to recover from the chemo.
So, important guidance from him:
He confirmed that I was doing all the right stuff and that the team I've put together is a good set of specialists. The most interesting thing he said though was that in his experience the patients that have the most trouble are the ones that give into depression. In the work I have ahead of me, my body has to do two things well - get rid of cancer cells and then recover from the onslaught of the chemo. He's seen patients have ups and downs and then get stuck in the downs and just really get depressed. In his experience, this has a markedly negative effect on both the efficacy of the chemo and the patient's ability to recover from the chemo.
So, important guidance from him:
- Happiness, laughter, love, spiritual contemplation, meditation and support are all essential pieces of keeping my mental state good. And my good mental state will help my body find and kill the cancer cells and cope with the negative effects of the chemo.
- Positive mental imagery will also help (think of cancer cells getting killed by kick-ass white blood cells and then those defeated cancer cells getting flushed from my body).
PET scan results - hmm, I wish I were a radiologist/nuclear medicine guy..
Did my PET/CT scan today. As I said in a previous post I was pretty nervous about getting the results. The test itself is pretty boring. Get an injection of radioactive sugar (earlier today I was emitting positrons courtesy of some Fluorine 18 isotope, thank you very much!), hang around for 45 minutes, then lie on the CAT/PET scan table for about 25 minutes (7 slices for someone my height, 3 1/2 minutes/slice).
Then, the big news. Where do I have hot nodes that might indicate rapidly growing cancer cells? And, the answer is: the CT tech doesn't tell you, it has to go to radiology/nuclear medicine (48 hour turn around time), then to your doctor (my next appt is on Tuesday). Damn! However, I did get a CD with all my images on it with a neat little app that allows you to run animations that show the 2-300 hundred images in sequence.
So this of course is like giving a loaded gun to a little kid. I anxiously load the CD and spend 1/2 hr. being completely confused about what I'm seeing. I finally see a cross-section that I kind of think I understand. If I'm reading it right (and this a GIANT if), the results are about what we expected to see. I have malignant tumors on the left hand side of my neck and down the central part of my chest. Nothing that I can see in my armpits or my groin area. This would confirm the initial diagnosis of Stage 2A. But I'm trying not to think about it too much because I only have the slimmest idea of what these things should look like. But hopefully this is the story which would be pretty good news.
After about an hour of getting myself worked up I called the cancer center and asked for the uninterpreted report from the radiologist (i.e. not waiting for my oncologist to interpret it). It is, after all, my body and my insurance paying for the work. But they have a 48 hour SLA with the radiologists (meaning that they may have to wait 48 hours for the written report). So that means Monday at the earliest. So, a bit more wait and see....
Then, the big news. Where do I have hot nodes that might indicate rapidly growing cancer cells? And, the answer is: the CT tech doesn't tell you, it has to go to radiology/nuclear medicine (48 hour turn around time), then to your doctor (my next appt is on Tuesday). Damn! However, I did get a CD with all my images on it with a neat little app that allows you to run animations that show the 2-300 hundred images in sequence.
So this of course is like giving a loaded gun to a little kid. I anxiously load the CD and spend 1/2 hr. being completely confused about what I'm seeing. I finally see a cross-section that I kind of think I understand. If I'm reading it right (and this a GIANT if), the results are about what we expected to see. I have malignant tumors on the left hand side of my neck and down the central part of my chest. Nothing that I can see in my armpits or my groin area. This would confirm the initial diagnosis of Stage 2A. But I'm trying not to think about it too much because I only have the slimmest idea of what these things should look like. But hopefully this is the story which would be pretty good news.
After about an hour of getting myself worked up I called the cancer center and asked for the uninterpreted report from the radiologist (i.e. not waiting for my oncologist to interpret it). It is, after all, my body and my insurance paying for the work. But they have a 48 hour SLA with the radiologists (meaning that they may have to wait 48 hours for the written report). So that means Monday at the earliest. So, a bit more wait and see....
Wednesday, March 10, 2010
echo cardiogram and pulmonary function tests look ok. Tomorrow, my PET scan.
Today I did two tests to evaluate my cardiac and pulmonary functions. Both are kind of fun. The echo cardiogram is kind of like an ultrasound, but instead of looking at a fetus it looks at your heart. The technician moves around the transducer on your chest with one hand and works the echo cardiogram machine with the other. Periodically the tech turned on the sound and I could hear the whoosh-thump of my heart doing its thing. Apparently my ejection rate is ok (measures how much blood I push through my heart with each beat; this is what can be affected by the adriamycin) so that's A Good Thing.
Equal fun with the pulmonary function test. The technician puts a clamp on your nose and you chomp down on a mouthpiece (similar to a scuba regulator). Then you do various exercises - take a deep breadth and exhale as hard and long as you can (measure lung volume), do rapid breathing (measure lung flexibility), measure the time it takes your lungs to purge themselves of Nitrogen (gas exchange capability).
I've had some exercise induced asthma in the past so they repeated some of the tests after giving me some albuterol. The numbers weren't significantly different, indicating that my airways were already pretty open (i.e I'm not suffering from low grade chronic asthma).
The pulmonary tech said my lung function was good - better than predicted for someone my weight and height.
Both the echocardiogram and PFT results will go to some central departments for a more complete review but the initial assessments on both of these is that I'm fine in terms of starting my chemo.
Tomorrow is the last big test, the PET scan. In this procedure you get injected with a short-lifed radioactive sugar that binds to fast growing cells (like cancer cells). The scanner then detects the decay of the particles and displays areas where there may be malignant cells. I'm a bit apprehensive about this test, since it can show other areas of cancer that haven't been detected by other means. It's important to know this obviously since the goal is to completely get rid of all the malignant cells. But it's still a bit scary to know that this test result could deliver some bad news. We'll see - hopefully no big surprise from this test. Thinking positive thoughts!!!!
Equal fun with the pulmonary function test. The technician puts a clamp on your nose and you chomp down on a mouthpiece (similar to a scuba regulator). Then you do various exercises - take a deep breadth and exhale as hard and long as you can (measure lung volume), do rapid breathing (measure lung flexibility), measure the time it takes your lungs to purge themselves of Nitrogen (gas exchange capability).
I've had some exercise induced asthma in the past so they repeated some of the tests after giving me some albuterol. The numbers weren't significantly different, indicating that my airways were already pretty open (i.e I'm not suffering from low grade chronic asthma).
The pulmonary tech said my lung function was good - better than predicted for someone my weight and height.
Both the echocardiogram and PFT results will go to some central departments for a more complete review but the initial assessments on both of these is that I'm fine in terms of starting my chemo.
Tomorrow is the last big test, the PET scan. In this procedure you get injected with a short-lifed radioactive sugar that binds to fast growing cells (like cancer cells). The scanner then detects the decay of the particles and displays areas where there may be malignant cells. I'm a bit apprehensive about this test, since it can show other areas of cancer that haven't been detected by other means. It's important to know this obviously since the goal is to completely get rid of all the malignant cells. But it's still a bit scary to know that this test result could deliver some bad news. We'll see - hopefully no big surprise from this test. Thinking positive thoughts!!!!
Eating Vegan - week 1 (by Susan)
In between going with George to his multiple diagnostic sessions over the past week, I have been trying to do what I can to reduce both our chances of cancer recurrence by exploring a vegan diet. I know that there are lots of studies out there, lots of theories, and lots of kooks with their story to tell when it comes to diet. You can get into religious wars over what food to eat. And coming from Boulder, people love to discuss food and various types of diets. Just go to any of your local Whole Foods, Sunshine's Market, or Vitamin Cottage if you want to meet some of these people (we still don't have Trader Joe's in Colorado). BUT....given all of this, I think there is mounting scientific research saying that eating animal products is bad for your health on a number of levels. Not to mention that the way that animals are treated that are used for food is enough to make you at least cringe, if not enough to break your heart. Although, to be perfectly honest, we are doing this for the selfish reason of living longer (see BTBD below). And if I can change what I eat and increase the longevity and health of myself and my family, why wouldn't I do it?
So.... week one going vegan. For me, it's not all that different from how I have been eating, except that my meals have the vegetables and not the meat. We are eating more whole grains and legumes for main dishes, with some soy products. George and I both agree that we don't like the fake meats made out of soy - we'd just rather eat real vegetables. There is definitely something emotional going on about not eating meat and dairy - part of me just rebelled at this thought and panicked that I wouldn't be able to find anything to eat. For the first several days I felt a bit lightheaded and had some stomach upset. But now, after just one week, I think I have gotten over it and I feel pretty good. In fact, I feel lighter all over. I haven't weighed myself, because I don't want this to be about weight, which we all seem to obsess over.
The other thing that has felt funny has been that I can't tell if I'm full or not. Something is messing with my hunger signals - I'm just not feeling the hunger pangs like I used to. I think when you eat a lot of vegetable your stomach just gets filled up. For a couple of days I was really craving dairy products, but already it has lessened.
Since our original commitment was to try this diet for one month, we will see how the next three weeks go!
So.... week one going vegan. For me, it's not all that different from how I have been eating, except that my meals have the vegetables and not the meat. We are eating more whole grains and legumes for main dishes, with some soy products. George and I both agree that we don't like the fake meats made out of soy - we'd just rather eat real vegetables. There is definitely something emotional going on about not eating meat and dairy - part of me just rebelled at this thought and panicked that I wouldn't be able to find anything to eat. For the first several days I felt a bit lightheaded and had some stomach upset. But now, after just one week, I think I have gotten over it and I feel pretty good. In fact, I feel lighter all over. I haven't weighed myself, because I don't want this to be about weight, which we all seem to obsess over.
The other thing that has felt funny has been that I can't tell if I'm full or not. Something is messing with my hunger signals - I'm just not feeling the hunger pangs like I used to. I think when you eat a lot of vegetable your stomach just gets filled up. For a couple of days I was really craving dairy products, but already it has lessened.
Since our original commitment was to try this diet for one month, we will see how the next three weeks go!
Tuesday, March 9, 2010
Central port summary - green light for exercise
Today we had a meeting with the thoracic surgeon that will install my port. I had a concern that I wouldn't be able to mountain bike with the port in (assuming I have the energy to mountain bike..). But he said it would be ok. He puts the port in fairly high on the chest - it will be above my collar bone on my left side. From there it's a nice gentle arc of the catheter into the superior vena cava vein that goes into my heart. So even if you fall you'll probably hit things in such a way that you won't damage the port. There are probably some sports - wrestling, boxing, etc. that wouldn't be good. And if you had some job like a mail carrier that put a heavy sling on that shoulder all day it might get irritated. But for what I do it should be fine. I'll get the port in a week from Friday. No general - which is nice - just a thunder sedation with an anesthesiologist present. An outpatient procedure - I'm getting good at showing up for outpatient procedures.
The oncology nurse agreed that having a port was definitely the way to go. As with all of these things, there are some possible problems - a blood clot in the vein that has the catheter in it, an infection around the port, etc. But these are pretty small percentage issues and having the port makes getting the chemo so much easier (and safer - you definitely don't want Adriamycin leaking out of a bad needle placement in your hand or arm burning the shit out of the surrounding tissue). So it's a calculated risk but I think the right approach.
The oncology nurse agreed that having a port was definitely the way to go. As with all of these things, there are some possible problems - a blood clot in the vein that has the catheter in it, an infection around the port, etc. But these are pretty small percentage issues and having the port makes getting the chemo so much easier (and safer - you definitely don't want Adriamycin leaking out of a bad needle placement in your hand or arm burning the shit out of the surrounding tissue). So it's a calculated risk but I think the right approach.
ABVD - BTBD
Today I had a visit with an oncology nurse - aka How to Have Fun with Cancer. The nurse went over all the things that can happen with chemo. Here it is in a nutshell:
Susan had another great phrase that I'm using as a mantra - "The only way out of this is through it."
So we're getting ready to get deep into the "through it" part of this. Chemo starts a week from Monday. Wish me luck that my body handles the chemo ok and that the funky cells in my immune system are completely wiped out by the ABVD assault team we're about to let loose.
- I'm getting ABVD, a four drug combination of:
- Adriamycin. Good news - great at killing cancer cells. Bad news - too much exposure can cause nasty problems with your heart. And if this stuff gets into your body outside your circulatory system it can cause internal burns, damage to tissue, etc. This drug is the major reason to get the central port.
- Bleomycin. This is the stuff that Lance didn't want to take because of the risk of reduced pulmonary function. Click through on the link to get the gory details on this bad boy.
- Vinblastine. Effective at reducing white blood cell count and hence useful in going after malignancies that grow from white blood cells. This one doesn't seem to have too many bad side effects.
- Decarbazine. Bad side effects - sterility, really nasty stuff if you're pregnant, lots of risk of vomiting, fatigue. We'd already retired from the baby business so no problems there. And the latest crop of anti-nausea drugs are apparently pretty good so hopefully that won't be too, too bad.
- My general good health should really help me get through the chemo. I will undoubtedly be fatigued, nauseous, will probably lose some if not all of my hair, will suffer (hopefully short term) reduced pulmonary and cardiac function. But the fact that I'm starting from a pretty reasonable fitness base should allow me to tolerate it better than someone who was unhealthy to begin with (smoker, overweight, etc.) The flip side to that is that because I am very active and pretty in tune with how my body is feeling, I'll probably notice the effects of the chemo more dramatically that someone that isn't as active.
- So all that sounds pretty rough...
- And here's the translation of the title to this post - ABVD - Better Than Being Dead. So when you consider the alternative to this treatment, these decisions become a lot simpler. I'll certainly do all I can do to minimize the trauma the chemo will wrack on my body and hopefully the malignant cells will get completely wiped out by this assault.
Susan had another great phrase that I'm using as a mantra - "The only way out of this is through it."
So we're getting ready to get deep into the "through it" part of this. Chemo starts a week from Monday. Wish me luck that my body handles the chemo ok and that the funky cells in my immune system are completely wiped out by the ABVD assault team we're about to let loose.
It's good to have insurance...
Today we got our first big statement of charges from all the medical services we've used over the last 3 weeks. $19,000 for my little foray to get my excisional biopsy done two Wednesdays ago. And that was an outpatient procedure. Yikes! So far our insurance has been great (fingers crossed). We have a $1,000 yearly cap per person on medical expenses for in-system provided care and we also have a flex spend account that lets us pay for that $1k with pre-tax dollars. I had a chance to sit down with the finance person from the oncology center we're using and she confirmed that she has gotten approval from our insurance for all the treatments I'll be getting.
Even though I'm extremely happy with the insurance we have, it really makes you think about what this experience would be like if you didn't have insurance. I really don't know what happens. I suspect that a treatment center like we're going to would just simply deny us service. They don't do ANYTHING until they get approval from the insurance company that they'll pay for it. If the insurance company can't pay, you pay. And if you can't pay - what? You die? You end up somewhere else with way less competent people putting life threatening chemicals into your body? Given my focus on getting myself healthy I probably won't think much about these issues over the next few months but it's chilling when you realize that we as a society definitely put a price tag on a human life. And when the life happens to be you, that decision point becomes a lot more personal.
Even though I'm extremely happy with the insurance we have, it really makes you think about what this experience would be like if you didn't have insurance. I really don't know what happens. I suspect that a treatment center like we're going to would just simply deny us service. They don't do ANYTHING until they get approval from the insurance company that they'll pay for it. If the insurance company can't pay, you pay. And if you can't pay - what? You die? You end up somewhere else with way less competent people putting life threatening chemicals into your body? Given my focus on getting myself healthy I probably won't think much about these issues over the next few months but it's chilling when you realize that we as a society definitely put a price tag on a human life. And when the life happens to be you, that decision point becomes a lot more personal.
Monday, March 8, 2010
My ass is popular...
Today I had a bone marrow biopsy and aspiration performed. I had heard that these could be kind of painful so I was a bit apprehensive. Turned out to be a piece of cake with some pretty humorous moments. I get setup in an exam room, IV put in for some Demerol to mellow me out, vital signs checked and then I get to lay on my stomach. Pants come down around my ass, shirt is hiked up, and there I am, lying on my stomach with my ass hanging out. Nurses coming in and out, getting prepped for the procedure.
So the conversations started going like this:
Mid next week we'll get the results back. Hopefully this will show lots of healthy marrow and no problems. Thinking good thoughts about that!
Tomorrow is the chat with the surgeon about getting the single lumen port installed. I'm a bit worried that having the port in may limit the amount of mtn biking I'll be able to do, for fear of crashing and screwing up the port. That will definitely be on the list of questions for tomorrow.
So the conversations started going like this:
- "So, how does my ass look like back there?"
- "Have you seen this nice an ass before?"
- "Hi, my name is George. This is my ass."
- "Usually, it takes at least two drinks and a slow dance before I'll let someone look at my ass like this."
Mid next week we'll get the results back. Hopefully this will show lots of healthy marrow and no problems. Thinking good thoughts about that!
Tomorrow is the chat with the surgeon about getting the single lumen port installed. I'm a bit worried that having the port in may limit the amount of mtn biking I'll be able to do, for fear of crashing and screwing up the port. That will definitely be on the list of questions for tomorrow.
Sunday, March 7, 2010
The Road to Health is Called Logistics
Starting the road to recovery and I've quickly realized that it's all about logistics! Here are the set of things I'll do this week:
- Monday morning, bone marrow harvesting. Numb the area, sedate the patient (that's me) and then take a power auger to my hip and take a sample of bone marrow. This will establish a baseline on my bone marrow (which is part of your immune system) which will be useful to determining how the chemo affects my body
- Tuesday morning. Meet with the surgeon to prep for getting my port implanted. I'm a bit worried that they won't let me mountain bike with the port in so this will definitely be one of the things will talk about.
- Tuesday afternoon. Meet with the nursing team to learn how to Have Fun With Cancer. In other words, how to deal with the chemo, how to keep my port clean, effects of radiation, etc. Review of the emotional support systems the cancer center offers, common issues families go through while supporting a cancer patient.
- Wed. morning. Echo cardiogram and pulmonary function test. The chemo can be hard on both lungs and heart so this is exploratory stuff to make sure there are no surprises in my cardiac or pulmonary system that would cause issues with my body working through the chemo.
- Thursday morning, PET scan. Inject a radioactive sugar dye into my body. The sugar binds to cells that are growing quickly (aka cancer cells). Then get imaged and look for hot spots beyond my neck and upper chest. After the chemo, the goal is the PET scan shows me to be completely clean of fast growing cells.
So next week is a big week of diagnostics. The week following we'll sit down and agree on a final treatment plan and soon after that start the chemo cycles.
- Monday morning, bone marrow harvesting. Numb the area, sedate the patient (that's me) and then take a power auger to my hip and take a sample of bone marrow. This will establish a baseline on my bone marrow (which is part of your immune system) which will be useful to determining how the chemo affects my body
- Tuesday morning. Meet with the surgeon to prep for getting my port implanted. I'm a bit worried that they won't let me mountain bike with the port in so this will definitely be one of the things will talk about.
- Tuesday afternoon. Meet with the nursing team to learn how to Have Fun With Cancer. In other words, how to deal with the chemo, how to keep my port clean, effects of radiation, etc. Review of the emotional support systems the cancer center offers, common issues families go through while supporting a cancer patient.
- Wed. morning. Echo cardiogram and pulmonary function test. The chemo can be hard on both lungs and heart so this is exploratory stuff to make sure there are no surprises in my cardiac or pulmonary system that would cause issues with my body working through the chemo.
- Thursday morning, PET scan. Inject a radioactive sugar dye into my body. The sugar binds to cells that are growing quickly (aka cancer cells). Then get imaged and look for hot spots beyond my neck and upper chest. After the chemo, the goal is the PET scan shows me to be completely clean of fast growing cells.
So next week is a big week of diagnostics. The week following we'll sit down and agree on a final treatment plan and soon after that start the chemo cycles.
Saturday, March 6, 2010
Neck check-up
Here's what my neck is looking like these days. I got my sutures out Thursday and it's healing nicely. The ENT said that they intentionally sew it up puckered up a bit so that over time the skin will stretch and it will be smooth. If they knitted it back together so it was smooth today I would have a dent in my neck in 3 months.
It felt a little itchy the first time I sweated hard into the incision but in general it's feeling very good. No pain. And because I can't see it unless I look in the mirror, it doesn't bother me that I kind of look like Frankenstein on one side of my neck. Susan says that I might consider putting a band aid over it when I go out in polite society but since that's a pretty rare occurrence for me I think I'll be OK leaving it exposed to the air.
It felt a little itchy the first time I sweated hard into the incision but in general it's feeling very good. No pain. And because I can't see it unless I look in the mirror, it doesn't bother me that I kind of look like Frankenstein on one side of my neck. Susan says that I might consider putting a band aid over it when I go out in polite society but since that's a pretty rare occurrence for me I think I'll be OK leaving it exposed to the air.
My Anti-Cancer Treatment; back to exercise
Thursday afternoon I got my sutures out and got clearance to start exercising. Sweet! I got a run and swim in on Friday afternoon with Caitlyn, and then did a bike ride this morning by myself. Wow, I feel a TON better after getting 3 workouts in yesterday and today. And what a beautiful day for a ride! Man, it felt good to be alive and out on the bike.
So although I've had surgery and I will have both chemo and radiation therapy to cure my illness, another Big Part of my cure will be my favorite road bike of all time, the Schwinn Peloton. Thx Charlie for hooking me up with this awesome bike! I've got 190 road miles in since the first of the year. Hoping to get in 2,000 road miles this year - we'll see how that goes...
Friday, March 5, 2010
Geo Borg
Wednesday we sat down with an oncologist and started outlining a treatment plan. One thing we discussed was giving me a single lumen port. This really does look like a Borg implant. Check out a picture of a single lumen port here
The port is put under your skin and the end of the port is put into a major vein in your chest/throat area. After the port is implanted, the skin heals over it so from the outside, you just appear to have a bump on your chest. When they give you chemo, they take this wicked bad ass needle and punch it through your skin into the port. The chemo can then be injected through the port directly into a major vein. Apparently this kind of chemo can be hard on your veins (let's not think about what it's doing to your arteries...) so the port allows the chemo to be injected more directly into you bloodstream.
Kind of like when you want to dump some major pesticide into your garden to kill some nasty weeds but don't want to damage the fruits and vegetables in other parts of the garden.
I'll have this port for about 4-6 months, depending upon how many chemo cycles I have. I'll be able to do all my normal activities with the port in place. Probably body surfing using my upper chest as a surfboard might be a bad idea and ditto for crawling bare chested through a swamp. But I should be able to swim, shower, etc. ok.
I'm thinking about trying to get a wireless bluetooth access point added to the port so I could then support bluetooth devices pairing with my body...
Another thing - I think we'll need to have a Borg collective to keep track of these things. Going by age in our immediately family, I would be 2 of 7, with Susan at the top of the ladder at 1 of 7 and Socrates (our cat) at end of the line as 7 of 7.
The port is put under your skin and the end of the port is put into a major vein in your chest/throat area. After the port is implanted, the skin heals over it so from the outside, you just appear to have a bump on your chest. When they give you chemo, they take this wicked bad ass needle and punch it through your skin into the port. The chemo can then be injected through the port directly into a major vein. Apparently this kind of chemo can be hard on your veins (let's not think about what it's doing to your arteries...) so the port allows the chemo to be injected more directly into you bloodstream.
Kind of like when you want to dump some major pesticide into your garden to kill some nasty weeds but don't want to damage the fruits and vegetables in other parts of the garden.
I'll have this port for about 4-6 months, depending upon how many chemo cycles I have. I'll be able to do all my normal activities with the port in place. Probably body surfing using my upper chest as a surfboard might be a bad idea and ditto for crawling bare chested through a swamp. But I should be able to swim, shower, etc. ok.
I'm thinking about trying to get a wireless bluetooth access point added to the port so I could then support bluetooth devices pairing with my body...
Another thing - I think we'll need to have a Borg collective to keep track of these things. Going by age in our immediately family, I would be 2 of 7, with Susan at the top of the ladder at 1 of 7 and Socrates (our cat) at end of the line as 7 of 7.
Thursday, March 4, 2010
Overwhelmed with Information (by Susan)
Yesterday we visited the oncologist and got hit with a barrage of information and statistics. I was taking notes, but it was kind of overwhelming. The really good news is that Hodgkin's lymphoma is very curable - he quoted over a 90% chance of total cure. However, the treatment, as George posted, is long and involved, will consist of chemo and radiation, and will take about 6 months. Over the next weeks George will be going through a series of diagnostic tests to pinpoint the exact location and stage of the cancer. We now seem to have jumped on the diagnostic and treatment train, and it is moving with ever-increasing velocity (is that the Moffat tunnel I see up ahead?). We were both exhausted by the visit. We are finding that these are some very long days and we just need to go home and get some extra rest (although that didn't stop George from going out with his friends last night).
We decided we are going to try eating vegan for one month and see how it goes. It does not seem as daunting when you just look at one month - not like saying, "I am going to give up ice cream, cheese, milk on my cereal, and meatballs for the rest of my life". If nothing else, it should help me in reducing my cholesterol level. The first foray into a vegan dinner was whole wheat spaghetti with marinara sauce and soy "sausage". The soy sausage was kind of gross, although George said it was edible. When you grow up thinking that a dinner has to include meat, carbo, and 2 vegetables (always the norm in our house), it's hard to think of a dinner that does not include animal protein. However, if we can reduce the risk of cancer recurrence and also even help get rid of the current cancer, it is well worth it.
Here's a pointer to an interesting article in today's Huffington Post that talks about the China Study - it's funny how once you start thinking about a topic you notice it popping up all over the place.
http://www.huffingtonpost.com/kathy-freston/on-cancer-and-a-vegetaria_b_46661.html
This weekend George will be able to get back on his bike and I am going to try to make vegan chocolate chip cookes (George's favorite).
We decided we are going to try eating vegan for one month and see how it goes. It does not seem as daunting when you just look at one month - not like saying, "I am going to give up ice cream, cheese, milk on my cereal, and meatballs for the rest of my life". If nothing else, it should help me in reducing my cholesterol level. The first foray into a vegan dinner was whole wheat spaghetti with marinara sauce and soy "sausage". The soy sausage was kind of gross, although George said it was edible. When you grow up thinking that a dinner has to include meat, carbo, and 2 vegetables (always the norm in our house), it's hard to think of a dinner that does not include animal protein. However, if we can reduce the risk of cancer recurrence and also even help get rid of the current cancer, it is well worth it.
Here's a pointer to an interesting article in today's Huffington Post that talks about the China Study - it's funny how once you start thinking about a topic you notice it popping up all over the place.
http://www.huffingtonpost.com/kathy-freston/on-cancer-and-a-vegetaria_b_46661.html
This weekend George will be able to get back on his bike and I am going to try to make vegan chocolate chip cookes (George's favorite).
Day Care as anti-cancer treatment?
Had our first oncology visit yesterday. In discussing Hodgkin Lymphoma, our doctor said that there is some belief that a bunch of behavior factors affect who gets this disease. The poster child for this disease is:
So how's that for ironic. Grow up in a small nuclear family, have your mom be at home, don't get exposed to a lot of illness at a young age and it makes you an immune system weenie (or at least gives you an immune system that can misbehave in later years).
So the silver lining here is that for all you parents that have felt guilty about putting your kids into day care when they were infants, you catch a break! You may actually be helping their immune system develop.
I haven't seen any hard science behind this so it's just second hand information from a local oncologist. But it was interesting to see how I nicely (if that word is appropriate here) fit into the Hodgkin demographic.
- middle/upper class male (check)
- small family (check, I have one brother)
- didn't go to day-care (check)
- relatively late exposure to Epstein Barr virus (my brother had mono when I was 12 or 13, so check)
So how's that for ironic. Grow up in a small nuclear family, have your mom be at home, don't get exposed to a lot of illness at a young age and it makes you an immune system weenie (or at least gives you an immune system that can misbehave in later years).
So the silver lining here is that for all you parents that have felt guilty about putting your kids into day care when they were infants, you catch a break! You may actually be helping their immune system develop.
I haven't seen any hard science behind this so it's just second hand information from a local oncologist. But it was interesting to see how I nicely (if that word is appropriate here) fit into the Hodgkin demographic.
Wednesday, March 3, 2010
Tin Cup
Mark's comment last night about all the possible environmental factors that could affect your risk of getting cancer made me think about a feeling I've had the last couple of weeks. I've been thinking about the movie Tin Cup, with Kevin Costner. At the beginning of the move his character is a happy go luck local golf pro with a great swing and a pretty laid back attitude. He initially meets the Rene Russo character who has adopted a whole menagerie of crap to help her golf swing. Crazy hat, rods hanging down from her hat, a device to keep her knees in synch through the swing, etc.
I've had that feeling about getting cancer. Two weeks ago I was feeling very healthy and had pretty good confidence in my body's ability to do what I wanted it to do. Getting a bit slower on the soccer pitch, the ice rink and in the pool but basically still able to do all the things I want to do physically. Eat reasonably, moderate the consumption of stuff that can be bad for you in excess and in general, it was pretty easy.
Now I can see a million things to think about. Where to live, what to eat, how to manage stress, what supplements to take, blah, blah, blah. I can see a path where I'll be like the character in Tin Cup - devoid of all confidence in my body's ability to take care of itself, micro-managing and second guessing all my life style choices - and never knowing if it's making me healthier or not.
That's not a path I want to go down so I must find a way to some moderation in all this! Do the best I can wrt to diet, lifestyle, etc. But not get so focused on that stuff that I give up on all the fun things there are in the world...
I've had that feeling about getting cancer. Two weeks ago I was feeling very healthy and had pretty good confidence in my body's ability to do what I wanted it to do. Getting a bit slower on the soccer pitch, the ice rink and in the pool but basically still able to do all the things I want to do physically. Eat reasonably, moderate the consumption of stuff that can be bad for you in excess and in general, it was pretty easy.
Now I can see a million things to think about. Where to live, what to eat, how to manage stress, what supplements to take, blah, blah, blah. I can see a path where I'll be like the character in Tin Cup - devoid of all confidence in my body's ability to take care of itself, micro-managing and second guessing all my life style choices - and never knowing if it's making me healthier or not.
That's not a path I want to go down so I must find a way to some moderation in all this! Do the best I can wrt to diet, lifestyle, etc. But not get so focused on that stuff that I give up on all the fun things there are in the world...
Tuesday, March 2, 2010
Going vegan? (by Susan)
We are avidly reading The China Study. This book is making sense to me. I have been angry this week, wondering why both George and I have had to deal with cancer. We have both lived what I have thought of as very healthy lifestyles, and there's no genetic predisposition or markers in either of our families. When it happened to me, I was ready to be resigned, thinking "oh well, sometimes shit just happens". But now that George has had this diagnosis, I am saying "wait a minute - this is happening too much, this is not right". So I've been reading, trying to figure out what could possibly be the cause. It is definitely something in our Western lifestyle that is causing the rates of cancers such as breast cancer, prostate cancer, and lymphoma to skyrocket, because the doctors can trace out a pattern of these diseases in Northern Europe and the United States. Is it toxins in our environment, stress, electromagnetic radiation, genetics, the food we eat or some kind of lethal combination of all these things? I do know one thing: there are many things I cannot change but I can change the food we eat. Ever since I was diagnosed with breast cancer I have been eating organic food, but still eating meat and dairy products (just organic ones). This apparently was not enough since George was eating the same food. Now we are seriously thinking about making the switch to a vegan diet. Am I ready for tofurkey? Or maybe just lots of healthy whole grains and vegetables? I don't want to think about what this house will be like if we start eating beans all the time. As George said tonight, "peanut butter and jelly is vegan, so if all else fails, we can eat that!"
I did order two vegan cookbooks from Amazon today, so stay tuned!
I did order two vegan cookbooks from Amazon today, so stay tuned!
Support - wow
Yesterday one of the guys at work walked by and demo-ed his new shaved head. He did it to support my journey through this illness. Man - really amazing. I was certainly moved. Now, he's much better looking with a shaved scalp than I would be so he's set the bar pretty high! Not sure whether I'll go down that road - depends on what type of and how much chemo I get. But it sure was a nice gesture. So powerful I'm thinking about getting an iPhone. (insider joke..)
The China Study
So WTF are so many people getting cancer? Seems like there's so much emphasis on understanding and treating the cell biology of cancer and way less energy being spent on understanding why there is such a marked rise in the incident of certain cancers in the US and Europe. On this topic, Ross pointed out an interesting book that talks about nutrition and cancer (among other health issues) - check out The China Study. I haven't read the entire book yet but I have it on my Kindle and will get through it soon. After having looked at this book a bit we're thinking about going the vegan route. Hey, if changing our diet keeps us healthy for the next 30 years I would definitely trade meats and dairy for that! I think the dairy would be the biggest change for us. We don't eat a ton of meat but dairy would be a big change - no cheese, no eggs, no milk. I think we're going to try for a week starting next week and see how it goes...
Monday, March 1, 2010
Nights are hard...
The last few nights I've been waking up a lot. Up at midnight, 1, 3, 4, 5:30. Historically I've been a great sleeper. No matter what's going on in my life I've always managed to think of bed as a safe haven from the troubles of the world. Get in bed, read for a few minutes and - bam! - a good night's sleep ensues. Since my neck biopsy, not so much. I wake up in the middle of the night - several times - and feel wide awake. No neck pain, just awake, lying in bed, thinking that being asleep would be much more fun. And of course, in the wee hours of the night it's always easy to think the dark thoughts - what's going on inside my body, where has the cancer spread, how hard will the treatments be, will the cancer be responsive to the chemo, etc. Susan's given me a couple of really appropriate guided meditations that I'm keeping by my bed. These prayers talk about how my cells are all happy, healthy and doing the right thing. Great positive thinking. So I think on those and practice letting go of anguish, quieting the monkey mind, taking comfort from Susan being right next to me in the bed.
OK, off to work! On Friday we got the first little nibble of what I'm sure will be a zillion pieces of medical insurance/bill information. Hmm, I think I need a content management system to take care of all of this! (Groan...) Perhaps I will setup a scanning subsystem, define a taxonomy, write a little ad-hoc HL7 protocol to interface with the various hospital systems, write some reporting sub modules to keep track of how all the money is flowing. Yeah! Or maybe I'll just file the papers in my filing cabinet, send documentation in for the co-pays and get on with life. Probably the latter...
OK, off to work! On Friday we got the first little nibble of what I'm sure will be a zillion pieces of medical insurance/bill information. Hmm, I think I need a content management system to take care of all of this! (Groan...) Perhaps I will setup a scanning subsystem, define a taxonomy, write a little ad-hoc HL7 protocol to interface with the various hospital systems, write some reporting sub modules to keep track of how all the money is flowing. Yeah! Or maybe I'll just file the papers in my filing cabinet, send documentation in for the co-pays and get on with life. Probably the latter...
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