What the Bleep. I posted this a couple of days ago. I know it was up because I got some comments on it but blogger put it back in my "drafts" bucket and took it off the blog. So here it is again. My apologies.
S
Hi there. Feels like I haven’t been able to get as many posts out lately as I want. I told myself yesterday, “self, no posts until you finish your taxes.” Well, I made a good sized dent in them yesterday so I decided today was a good day for a post.
First the update, and then the fund stuff: I discontinued the radiation treatment on Monday. The pain that I experienced over the weekend was almost certainly from inflation caused by the radiation treatment. The spot that they were working on is on my left clavicle. There is a big old tumor there and it was getting inflamed from the radiation. That in turn was pushing on the nerves that run down the clavicle and causing intense pain. The radiation oncologist response was,” just take a bunch of non-steroidal anti inflammatory.” That just shows he doesn’t know me very well… I cannot take N.s.a.i.d’s due to my kidney problems. So it was a pretty easy decision to bag the treatments all together. That means I don’t have to make the 1hour one way commute down to Roseville all week and all next week and I am glad to have the time back. Bummer that it isn’t going to work for me but at least it was just a side treatment designed to just treat the pain in my clavicle in the first place. It was not a primary treatment. I’ll be fine without it.
So my week has been pretty good since then. I am taking long naps in the afternoons. Waking up at 10 AM and going to bed at 10 PM. Mostly I have been feeling good.
Matt Barnes came over today to be Spencer spotter while the c/h, kids, granny and gramps hiked the Monroe ridge trail. It was great hanging out with Matt. We did a lot of talking about the stuff that is important to us and how pursuing your passion is such an important part of being a happy person.
That reminded me that I’ve been wanting to write about that for some time. It seems to me that one of the things that defines us as humans is what we do for our spirits. The fact that almost each and every one of us has something that we do on a regular basis that helps us transcend the weekly beat down of life. For me it was cycling. Throwing my leg over the bike and putting in miles was the thing that I did to keep my head straight amidst all the noise and distraction of the demands of life. It gave me joy and a sense of freedom. It also gave me a sense of limitlessness in that I could go farther and farther on the bike and was only limited by my own body and how long I would hold up. When I was on my bike there was just me, the bike, the road, and my friends. No work, no family problems, no stress. That was my passion.
Almost everyone I know has something that they pursue as their passion. Religious folks go to church on Sunday, surfers look for the perfect wave, skiers spend their lives looking for the ultimate powder day and the list goes on. It seems to me that the healthiest people both of mind and body are the ones that have a passion and devote a good part of their lives to pursuing that passion. It also seems to me that the opposite is true. People that don’t have a developed sense of passion pursuit tend to be the grumpiest most out of shape people around. It seems to me that most substance abusers are lacking a passion. I don’t know if one is the symptom of the other but they do seem to go hand in hand.
Another thing that I have noticed is that like attracts like. I firmly believe that a big part of the reason that I have so many friends old and new coming out of the woodwork to support me through this is because I have spent my whole life in pursuit of my passions. At time is has been climbing, sailing, surfing, kayaking, rafting, etc. Each of those pursuits has put me in the company of other folks that were equally as passionate about those activities. From that common passion long term bonds of friendship have developed and from there, community has grown.
Right now when I am the most hammered, I have the least to be passionate about. I can’t really do anything. It is a pretty big effort on most days to sit at the computer and write a bog post, but its what I’ve got for now. Consequently I feel pretty ripped off. I spend a lot of my time fantasizing about what I am going to do when I get done with this. I feel like I have got pay myself back for months of missing out on the part of life that to me makes it worth living. I am not sure how that is going to take shape but I do know that I am going to have to pay myself back.
So I have a question for you dear readers. What is it that you do to transcend the weekly beatdown. Please leave your answer in the comments. Please note, if you have had trouble leaving comments in the past, I have made it easier. You should not have to sign up for a blogger account you should be able to do it pretty easily and I'd love to hear from you.
Thursday, March 20, 2008
Sunday, March 16, 2008
Out of the Cave for the Moment
It has truly been the worst week yet. It started with Nausea that I wrote about. We got that more or less under control with prilosec and so I have been feeling less like barfing all the time. I started radiation treatment on the tumor on my clavicle on Thursday. On Thursday night I noticed an increased level of pain in the clavicle but thought not much of it. On Friday I went for my next radiation treatment and everything went just fine. I woke up on Saturday in an incredible amount of pain. It is hard to describe the pain but it felt like a broken bone x10.
Daughter one and two had both come down with symptoms of strep throat so the chickenhawk took them down the hill to kaiser for diagnosis. While they were out my pain started to really build. Granny was with me and doing her best to take care of me but all I could do was lay there and moan. They came home with antibiotics and the C/H clicked into taking care of me mode. She called doctor KT who made yet another house call. She sat by my bedside and kept giving me more and more liquid morphine until the pain got to a bearable level. Finally I felt good enough to watch Fight Club on the little DVD player. What a great movie. The whole day yesterday is a blur. I just remember being in pain and watching the movie and that is about it. I did do lot of fantasizing about riding my mountain bike and sailing in the Sea of Cortez. I think the pain is related to the radiation treatment so I am going to talk with the doc about discontinuing it.
I hate the end of the day the most. It seems like that is the time of day when I focus the most on my plight. People always give me great feedback about my positive attitude and I do feel like I am mostly positive but when it is time to go to bed I often just feel terrible. My body has been hijacked and I'm only a small bit of the way through the battle to get it back. Sometimes I just cant believe that I have to keep going through this. It is a really long and hard battle and there aren't really any breaks just weird semi-comatose sleep that is hard to wake up from. So last night I broke down and cried again before I went to sleep.
I woke this morning and the sun was out and the pain had subsided. I am completely exhausted to the point where I am having trouble keeping my eyes open to write this post. At least there is a lull in the battle right now. That's all I've got for now. I'll try to write something witty and insightful next time.
Thanks to everyone who is helping in so many ways.
Daughter one and two had both come down with symptoms of strep throat so the chickenhawk took them down the hill to kaiser for diagnosis. While they were out my pain started to really build. Granny was with me and doing her best to take care of me but all I could do was lay there and moan. They came home with antibiotics and the C/H clicked into taking care of me mode. She called doctor KT who made yet another house call. She sat by my bedside and kept giving me more and more liquid morphine until the pain got to a bearable level. Finally I felt good enough to watch Fight Club on the little DVD player. What a great movie. The whole day yesterday is a blur. I just remember being in pain and watching the movie and that is about it. I did do lot of fantasizing about riding my mountain bike and sailing in the Sea of Cortez. I think the pain is related to the radiation treatment so I am going to talk with the doc about discontinuing it.
I hate the end of the day the most. It seems like that is the time of day when I focus the most on my plight. People always give me great feedback about my positive attitude and I do feel like I am mostly positive but when it is time to go to bed I often just feel terrible. My body has been hijacked and I'm only a small bit of the way through the battle to get it back. Sometimes I just cant believe that I have to keep going through this. It is a really long and hard battle and there aren't really any breaks just weird semi-comatose sleep that is hard to wake up from. So last night I broke down and cried again before I went to sleep.
I woke this morning and the sun was out and the pain had subsided. I am completely exhausted to the point where I am having trouble keeping my eyes open to write this post. At least there is a lull in the battle right now. That's all I've got for now. I'll try to write something witty and insightful next time.
Thanks to everyone who is helping in so many ways.
Wednesday, March 12, 2008
Update
Since getting out of the big house life has been a bit more difficult than usual. I have been experiencing a lot of nausea. I am not sure what it is coming from. I am on so many drugs that the side effects all collide or cancel each other out or add up to more than they should. It is pretty crazy. At times the nausea has been so bad that all I can do is sit there and try to keep it together. Blogging has been pretty far from my mind.
Yesterday Robin and Barbara went down to the Folsom pharmacy and picked up a prescription of prilosec an anti-nausea drug. Since I've got that on board I am feeling lots better and am able to eat again. the Chickenhawk and I just came home from breakfast at the Coloma Club. For anyone that knows the Coloma Club, they are rolling their eyes right now or possibly pointing their finger down their throat. But I am here to tell you it was great to have food brought to us, what we asked for when we wanted it and to just sit and talk. The Coloma Club is a yucky place but sometimes it just hits the spot.
Spring has sprung in the Coloma Lotus valley. It is my favorite time of year to be here. Coloma is an incredibly beautiful place. We are in the foothills of the Sierra Nevada. The elevation at the floor of the valley is only 750 feet but the mountains that create the canyon rise 2000 feet above the valley. Out the window of my family room is a view of Mount Murphy the biggest most prominent hill in the valley. It burned last summer and has been black ever since. Now it has turned green and the south facing flank of it has got California poppies blanketing it. All of the hills have turned the green of fresh new grass. In a few months that grass will dry out and the hills will be a dusky blond but for now it is shimmering emerald green. The buckeyes are all leafing out in a brilliant green and there are lots of trees blossoming in white flowers all over.
The C/H was running on the Monroe ridge trail yesterday the opposite side of the valley from Mt. Murphy. She said the ridge was blanketed with shooting stars.
The day time temperatures are running in the high 60's or low 70's and it has been sunny to partly cloudy. It is absolutely perfect bike riding weather. If you are not doing anything, I suggest you get in your car, drive here and ride your face off. You will not regret it.
My in laws, Charlie and Nancy stopped by yesterday on their way back home to Bend OR. They had taken a short break after being here for the better part of February. They stayed in a local campground in their palatial RV. They did were really great at stepping in and helping to run our house as the Share the Care group was getting on its feet. They figured out the routine beautifully and wrangled the kids really well. They did most of the grocery shopping and tons of house repairs that we couldn't get to. Their help was so incredibly key I really am grateful for that.
My Mom and her hubby Chuck are here now and are getting into the swing of things. My Mom, we call her Granny was a nurse for her whole working life. She just recently retired. She has been really great at taking care of me while I am down and in need. That takes a load off the C/H who has been working so hard and is constantly struggling with burn out.
Speaking of that, I am really struggling to figure out how I can help the C/H with burn out. She is the hardest worker I know. She will keep going and going until she pops. She is a sprinter not a marathoner. She does not have an easy time asking for help or accepting help or even realizing that she needs it. She just gets angry. At everything. I feel so bad about that. I am usually the one who talks her down, tells her that everything is going to be all right but I am not doing a very good job at that right now. I mean when you look at me and here me telling you everything is going to be all right it has got to be kind of a joke really. There is another example of the insults of cancer, another thing that I have to come to terms with. I cant take care of my spouse the way I used to. It is so fucked.
We are in the second week of Share the Care and it is really working well. At the initial meeting that we had, I mentioned that there were about 100 people that had expressed interest in helping out in various ways. Our coordinator Adrienne has scheduled weekly captains for the next several months. The job of the captains is to schedule the weeks' events; meals, rides to the doctor, kids to and from school etc. As a result there are still about 90 volunteers that have yet to be called on. If you are one of those folks, rest assured, we want your help it is just a matter of getting to calling on people to get them scheduled. We really truly appreciate all the help and offers of help. Please be patient with our process.
I understand that there will be a work party weekend coming up on the 28th or 29th. Stay tuned for more info about that.
So, all in all, I am feeling better than I have for the last few days which I can say were the worst so far. I am catching up with phone calls and stuff that I need to do like taxes and selling my truck. I feel like I have fallen out of touch with a lot of folks that are very important to me but I know you all understand that I am doing what I can while taking care of myself first. I have been dreaming lots about what I am going to do and where I am going to go when I am done with this. I really want to go sailing, somewhere tropical, with the kids. I want to go to Disney land with the girls. I want to form a community assitance group called Loco Care to take care of people in the community that need help. I am dreaming of doing something big on the bike, not sure yet but possibly RAAM with a Velo Loco team possibly 2010.
Yesterday Robin and Barbara went down to the Folsom pharmacy and picked up a prescription of prilosec an anti-nausea drug. Since I've got that on board I am feeling lots better and am able to eat again. the Chickenhawk and I just came home from breakfast at the Coloma Club. For anyone that knows the Coloma Club, they are rolling their eyes right now or possibly pointing their finger down their throat. But I am here to tell you it was great to have food brought to us, what we asked for when we wanted it and to just sit and talk. The Coloma Club is a yucky place but sometimes it just hits the spot.
Spring has sprung in the Coloma Lotus valley. It is my favorite time of year to be here. Coloma is an incredibly beautiful place. We are in the foothills of the Sierra Nevada. The elevation at the floor of the valley is only 750 feet but the mountains that create the canyon rise 2000 feet above the valley. Out the window of my family room is a view of Mount Murphy the biggest most prominent hill in the valley. It burned last summer and has been black ever since. Now it has turned green and the south facing flank of it has got California poppies blanketing it. All of the hills have turned the green of fresh new grass. In a few months that grass will dry out and the hills will be a dusky blond but for now it is shimmering emerald green. The buckeyes are all leafing out in a brilliant green and there are lots of trees blossoming in white flowers all over.
The C/H was running on the Monroe ridge trail yesterday the opposite side of the valley from Mt. Murphy. She said the ridge was blanketed with shooting stars.
The day time temperatures are running in the high 60's or low 70's and it has been sunny to partly cloudy. It is absolutely perfect bike riding weather. If you are not doing anything, I suggest you get in your car, drive here and ride your face off. You will not regret it.
My in laws, Charlie and Nancy stopped by yesterday on their way back home to Bend OR. They had taken a short break after being here for the better part of February. They stayed in a local campground in their palatial RV. They did were really great at stepping in and helping to run our house as the Share the Care group was getting on its feet. They figured out the routine beautifully and wrangled the kids really well. They did most of the grocery shopping and tons of house repairs that we couldn't get to. Their help was so incredibly key I really am grateful for that.
My Mom and her hubby Chuck are here now and are getting into the swing of things. My Mom, we call her Granny was a nurse for her whole working life. She just recently retired. She has been really great at taking care of me while I am down and in need. That takes a load off the C/H who has been working so hard and is constantly struggling with burn out.
Speaking of that, I am really struggling to figure out how I can help the C/H with burn out. She is the hardest worker I know. She will keep going and going until she pops. She is a sprinter not a marathoner. She does not have an easy time asking for help or accepting help or even realizing that she needs it. She just gets angry. At everything. I feel so bad about that. I am usually the one who talks her down, tells her that everything is going to be all right but I am not doing a very good job at that right now. I mean when you look at me and here me telling you everything is going to be all right it has got to be kind of a joke really. There is another example of the insults of cancer, another thing that I have to come to terms with. I cant take care of my spouse the way I used to. It is so fucked.
We are in the second week of Share the Care and it is really working well. At the initial meeting that we had, I mentioned that there were about 100 people that had expressed interest in helping out in various ways. Our coordinator Adrienne has scheduled weekly captains for the next several months. The job of the captains is to schedule the weeks' events; meals, rides to the doctor, kids to and from school etc. As a result there are still about 90 volunteers that have yet to be called on. If you are one of those folks, rest assured, we want your help it is just a matter of getting to calling on people to get them scheduled. We really truly appreciate all the help and offers of help. Please be patient with our process.
I understand that there will be a work party weekend coming up on the 28th or 29th. Stay tuned for more info about that.
So, all in all, I am feeling better than I have for the last few days which I can say were the worst so far. I am catching up with phone calls and stuff that I need to do like taxes and selling my truck. I feel like I have fallen out of touch with a lot of folks that are very important to me but I know you all understand that I am doing what I can while taking care of myself first. I have been dreaming lots about what I am going to do and where I am going to go when I am done with this. I really want to go sailing, somewhere tropical, with the kids. I want to go to Disney land with the girls. I want to form a community assitance group called Loco Care to take care of people in the community that need help. I am dreaming of doing something big on the bike, not sure yet but possibly RAAM with a Velo Loco team possibly 2010.
Saturday, March 8, 2008
Rumors of my demise are greatly exaggerated
Hey There,
It is 7:30 on Saturday night. The C/H just got daughter one to bed. Daughter two is a at a school event. I got back this morning from the Kaiser Hilton. On Thursday evening I was running a low grade fever. We were told by the oncologist to go straight to the ER if I ran a fever so that is what we did. Seth and Noey from next door came over and watched the kids until Mrs. Thomas could get here to spend the night. The C/H drove me down to the ER and they admitted us right away. It was all a haze to me since I took my Thalidomide when we got there and proceeded to fall fast asleep. Ignorance is bliss.
Woke up on Friday feeling just peachy but they didn't want to turn me loose until I pooped. I spent the day taking increasingly more powerful laxatives with the hope of going home to be with the family. Around four in the afternoon it was starting to look doubtful. So David dropped what he was doing to come down and relieve the chickenhawk.
It was funny in a pathetic sort of way. Each time the nurse would bring out the bigger laxative guns they would make a big deal about how I was bound to poop really soon. But I kept exceeding expectations. The last desperate try was a mineral oil enema at about 7 PM. I figured that would blast me out, but by 9:30 still no action. So we bivouaced for the night.
In the AM David scurried over to Starbucks and got me a Venti drip. While he was gone the nurse brought me some prune juice. The combo did the trick and we were on the road by about 9. I spent all day sleeping. I think I'll add prune juice to my morning routine.
I am home, on a new course of antibiotics and feeling a bit tired but no worse for wear and tear. Thanks to David Seth and Barbara for the last minute coverage.
Granny arrives on Monday. I am looking forward to seeing her, Chuck and their new dog Sophie.
It is 7:30 on Saturday night. The C/H just got daughter one to bed. Daughter two is a at a school event. I got back this morning from the Kaiser Hilton. On Thursday evening I was running a low grade fever. We were told by the oncologist to go straight to the ER if I ran a fever so that is what we did. Seth and Noey from next door came over and watched the kids until Mrs. Thomas could get here to spend the night. The C/H drove me down to the ER and they admitted us right away. It was all a haze to me since I took my Thalidomide when we got there and proceeded to fall fast asleep. Ignorance is bliss.
Woke up on Friday feeling just peachy but they didn't want to turn me loose until I pooped. I spent the day taking increasingly more powerful laxatives with the hope of going home to be with the family. Around four in the afternoon it was starting to look doubtful. So David dropped what he was doing to come down and relieve the chickenhawk.
It was funny in a pathetic sort of way. Each time the nurse would bring out the bigger laxative guns they would make a big deal about how I was bound to poop really soon. But I kept exceeding expectations. The last desperate try was a mineral oil enema at about 7 PM. I figured that would blast me out, but by 9:30 still no action. So we bivouaced for the night.
In the AM David scurried over to Starbucks and got me a Venti drip. While he was gone the nurse brought me some prune juice. The combo did the trick and we were on the road by about 9. I spent all day sleeping. I think I'll add prune juice to my morning routine.
I am home, on a new course of antibiotics and feeling a bit tired but no worse for wear and tear. Thanks to David Seth and Barbara for the last minute coverage.
Granny arrives on Monday. I am looking forward to seeing her, Chuck and their new dog Sophie.
Wednesday, March 5, 2008
Cold Hard Facts: I Do Requests
In my last post I put it out there. If there is info that you want I want to provide it. My good friend Beth who moved to Napa a couple of years ago with her hubby Marco and beautiful daughter has requested to know what is really up. What the diagnosis and prognosis is. I imagine there are a few readers wondering the same thing. Honestly I am not paying much attention to long-term prognosis. I intend to set new records in that department so I don't want to even know what normal is.
Here is what I know: I have multiple myeloma and am in stage 2a. The goal is to get to where I no longer have any syptoms of multiple myeloma. I started taking thalidomide and dexamethazone (sp?) last Monday. The oncologist says I will continue with that for 3-4 months with the idea of getting my blood and bone marrow as cleaned up as possible. Once we have got to a plateau in terms of improvement of blood numbers, then I will go for a Bone Marrow (stem cell) transplant.
That BMT will be Autologis which means I will receive my own bone marrow that will be harvested from me, cleaned up and put back into me. That process will take 4-6 weeks of being in the hospital at Stanford. In order to put the bone marrow back into my body the doctors have to basically turn off my immunity so that I will not reject the new bone marrow. I will be in complete isolation for a couple of weeks while that happens. It is likely that will take place in July and August. So I wont be going to the death ride this year. I wonder how much of the Tour I'll be able to watch... I will be pretty weak and worn out after that happens so i will probably take another month or two of recovery before I am back and functioning well.
Also in the mean time: the spot that has been giving me the most pain lately is my left clavicle. I have a large hideous tumor on it and the bone is just plain coming apart. This makes it painful to carry anything. To sit up for any period of time and my back neck are reshaping around it so I am just plain in a lot of pain over this. Massage from Heather and sitting in the Hot tub have been a key in combating this.
Next week I will start radiation on that tumor with the hope of killing that particularly bad spot. I have high hopes that the bone will start to re-grow and start doing its job again but it is possible that it wont and I'll have to talk to the orthopedic surgeon about what to do about that.
Collateral Damage: Another thing that I do know is that the problems with my hip are not cancer casued. I have avascular necrosis of my left femoral head. That means there is a dime sized chunk of bone on the tip of my femur that is dead and not likely to repair itself once my bone marrow is funtioning properly. It is too soon to tell what exaclty will be done about this but I am thinking it will be a hip replacement surgery. Basically what Floyd Landis did. I'll get a metal femur head and they'll clean out the joint and put me back together so I can start training soon.
Outlook One of the things that we have learned is that survivor statistics for MM are mostly wrong and out of date since so much has been discovered about treatment and diagnosis in the last five years. They say that it is incurable but the reality is that plenty of people go years and years with out showing symptoms. That sounds like cured to me.
Moreover, I am a very unusual MM patient. I am not over 70 and black. I am at the very young range and I am much more healthy than most who get it. That is to my advantage. For example most older folks who are diagnosed with MM do not get BMTs because the risk benefit does not work well for them. My treatment is as aggressive as it gets and I am standing up for it really well thus far. Frankly, I can take a lot more punishment than I've got so far.
I try not to pay attention to the survivorship numbers because I just plain don't feel like they apply to me. I am too out of the box to start with. I plan on setting new records.
Honestly though, I have moved my mental life expectancy up. I have always envisioned growing old with the chickenhawk. I really thought that 80 or more would be how long I go. Now I don't think that. I do think it is realistic that I'll be around pissing everyone off for another 20 years or so. But who knows... No one knows. I can tell you when I am cancer free, I am unlikely to go back to the track of working full time til I am 65 and then retiring to enjoy my golden years. I want to take more of my life NOW to savor those golden moments NOW. I want to teach my girls to sail. I want to ride and paddle with my buddies. I want to enjoy sunsets. I want to serve my fellow man that I might pay back a little of what I have received through this miracle.
Any other questions from readers. Drop 'em in the comments. Thanks for that one Beth. It was good to write about it.
Thanks for reading
Here is what I know: I have multiple myeloma and am in stage 2a. The goal is to get to where I no longer have any syptoms of multiple myeloma. I started taking thalidomide and dexamethazone (sp?) last Monday. The oncologist says I will continue with that for 3-4 months with the idea of getting my blood and bone marrow as cleaned up as possible. Once we have got to a plateau in terms of improvement of blood numbers, then I will go for a Bone Marrow (stem cell) transplant.
That BMT will be Autologis which means I will receive my own bone marrow that will be harvested from me, cleaned up and put back into me. That process will take 4-6 weeks of being in the hospital at Stanford. In order to put the bone marrow back into my body the doctors have to basically turn off my immunity so that I will not reject the new bone marrow. I will be in complete isolation for a couple of weeks while that happens. It is likely that will take place in July and August. So I wont be going to the death ride this year. I wonder how much of the Tour I'll be able to watch... I will be pretty weak and worn out after that happens so i will probably take another month or two of recovery before I am back and functioning well.
Also in the mean time: the spot that has been giving me the most pain lately is my left clavicle. I have a large hideous tumor on it and the bone is just plain coming apart. This makes it painful to carry anything. To sit up for any period of time and my back neck are reshaping around it so I am just plain in a lot of pain over this. Massage from Heather and sitting in the Hot tub have been a key in combating this.
Next week I will start radiation on that tumor with the hope of killing that particularly bad spot. I have high hopes that the bone will start to re-grow and start doing its job again but it is possible that it wont and I'll have to talk to the orthopedic surgeon about what to do about that.
Collateral Damage: Another thing that I do know is that the problems with my hip are not cancer casued. I have avascular necrosis of my left femoral head. That means there is a dime sized chunk of bone on the tip of my femur that is dead and not likely to repair itself once my bone marrow is funtioning properly. It is too soon to tell what exaclty will be done about this but I am thinking it will be a hip replacement surgery. Basically what Floyd Landis did. I'll get a metal femur head and they'll clean out the joint and put me back together so I can start training soon.
Outlook One of the things that we have learned is that survivor statistics for MM are mostly wrong and out of date since so much has been discovered about treatment and diagnosis in the last five years. They say that it is incurable but the reality is that plenty of people go years and years with out showing symptoms. That sounds like cured to me.
Moreover, I am a very unusual MM patient. I am not over 70 and black. I am at the very young range and I am much more healthy than most who get it. That is to my advantage. For example most older folks who are diagnosed with MM do not get BMTs because the risk benefit does not work well for them. My treatment is as aggressive as it gets and I am standing up for it really well thus far. Frankly, I can take a lot more punishment than I've got so far.
I try not to pay attention to the survivorship numbers because I just plain don't feel like they apply to me. I am too out of the box to start with. I plan on setting new records.
Honestly though, I have moved my mental life expectancy up. I have always envisioned growing old with the chickenhawk. I really thought that 80 or more would be how long I go. Now I don't think that. I do think it is realistic that I'll be around pissing everyone off for another 20 years or so. But who knows... No one knows. I can tell you when I am cancer free, I am unlikely to go back to the track of working full time til I am 65 and then retiring to enjoy my golden years. I want to take more of my life NOW to savor those golden moments NOW. I want to teach my girls to sail. I want to ride and paddle with my buddies. I want to enjoy sunsets. I want to serve my fellow man that I might pay back a little of what I have received through this miracle.
Any other questions from readers. Drop 'em in the comments. Thanks for that one Beth. It was good to write about it.
Thanks for reading
Tuesday, March 4, 2008
Of Team Work and Bike Racing
A disclaimer. I am a puddin'. I have never toed the start line in a road bike race. I have dabbled in cyclocross, mountain bike races, and time trials, but I have never raced on the road. I am, however, a huge fan of road bike racing. I love to read about it on the net and to watch it when it comes on TV.
This blog started as a cyclist's blog. A place for me to reflect on my life as a cyclist. Obviously that is not how things developed. But my life always seems to work out such that the experiences that lead up to any given point prepare me well for the next big challenge. For example, what I have learned about bike racing has really prepared me for the challenges I face in fighting cancer. If you have an understanding of road racing skip the next two paragraphs, if you think that road racing is an individual sport and have no idea that it is truly a team sport, read on.
The first thing that you have to understand to grasp cycling as a team sport is drafting. In order to go fast on a bike one must overcome the resistance of the air that one is moving through. The faster you go the more effort it takes to speed up or maintain speed. However, if you ride right behind another rider the wind resistance is decreased by 15 -20% and if you ride behind a group of riders it is like being pulled along by some magic strings that make flats seem like downhills and uphills seem like flats. Hence the term, to pull; which means ride at the front of the group and do the difficult work of setting the pace and breaking the wind.
Next bear in mind that bike racing is about endurance. It is one thing to race for 10 or 15 minutes and then see who has the speed and power to get across the line first. That is really too easy. Most pro bike races are upwards of 100 miles. The idea is to wear the riders down, cut into their reserves, make them suffer, and then see who has been able to manage their bodies and their attitudes well enough to get across the line first. Usually before the start of a race the team decides who has the best chance of winning today and that rider becomes the "protected rider" for the race. Lance Armstrong in the Tour de France is a good example of a protected rider. He got this honor because he was most likely to be the strongest rider at the moments of the race that would decide the outcome of the 2,000 plus mile sufferfest. As a protected rider his teammates would look after his many needs during the race. They allow him to ride in the best spot in the peloton. Certain members of the team are given the role of domestique which means they bring the protected rider food, water and clothing as needed in addition to pulling as needed. Domestiques can also serve as enforcers. Bike races are not friendly rides through the park. They are often more like a street fight at 20- 30 miles per hour. Having a tough, fearless rider at your side can be a good way to keep out of unwanted trouble.
So the teammates of Lance Armstrong hardly ever become household names and the mainstream hardly ever knows that riders like Lance can never get the fame and fortune without a team that is completely dedicated, who commit complete self sacrifice to their captain's success. . Also, each team member supports the protected rider in the way that they are best suited to do so. A big heavy sprinter is no good for helping a protected rider get over a climb. But he can usually pull though flat sections of road for miles and miles. The domestiques are truly the unsung hero's of the race.
I've said it before in this blog and I will say it again; I have an awesome team. I doubt I could get through this without the help of so many people. First and foremost is the chickenhawk who is putting so much aside to help me, but also lots of other folks. I will keep writing about specific members my support group but today I wanted to write about my feelings toward the team.
It is great to me that everyone that is stepping up is able to contribute in a way that feels meaningful to them and best suits their skills. I have massage therapists, moms who make meals, guys who come over and install hot tubs, or do other "blue jobs." Many just come over to stay close to me, help me through moments of pain, bring me food and water and give encouragement by listening and talking about life. Others take me to doctors appointments. I have also received some awesome art from the kids in the community. I also have a financial committee forming who will help with fundraising and planning for bridging the gap in our financial situation.
I have often listened to, or read, the post-race winners' interviews. It is not uncommon for a winner to say that he put in the final winning effort out of a desire to deliver a win for the team after they have given so much support during the race. These are the riders that I think have true panache. I am really starting to understand that sentiment. I have been given so much support by so many people that I have an overwhelming desire to do my very best, to reach deep into my suitcase of courage and deliver nothing short of a win.
This blog started as a cyclist's blog. A place for me to reflect on my life as a cyclist. Obviously that is not how things developed. But my life always seems to work out such that the experiences that lead up to any given point prepare me well for the next big challenge. For example, what I have learned about bike racing has really prepared me for the challenges I face in fighting cancer. If you have an understanding of road racing skip the next two paragraphs, if you think that road racing is an individual sport and have no idea that it is truly a team sport, read on.
The first thing that you have to understand to grasp cycling as a team sport is drafting. In order to go fast on a bike one must overcome the resistance of the air that one is moving through. The faster you go the more effort it takes to speed up or maintain speed. However, if you ride right behind another rider the wind resistance is decreased by 15 -20% and if you ride behind a group of riders it is like being pulled along by some magic strings that make flats seem like downhills and uphills seem like flats. Hence the term, to pull; which means ride at the front of the group and do the difficult work of setting the pace and breaking the wind.
Next bear in mind that bike racing is about endurance. It is one thing to race for 10 or 15 minutes and then see who has the speed and power to get across the line first. That is really too easy. Most pro bike races are upwards of 100 miles. The idea is to wear the riders down, cut into their reserves, make them suffer, and then see who has been able to manage their bodies and their attitudes well enough to get across the line first. Usually before the start of a race the team decides who has the best chance of winning today and that rider becomes the "protected rider" for the race. Lance Armstrong in the Tour de France is a good example of a protected rider. He got this honor because he was most likely to be the strongest rider at the moments of the race that would decide the outcome of the 2,000 plus mile sufferfest. As a protected rider his teammates would look after his many needs during the race. They allow him to ride in the best spot in the peloton. Certain members of the team are given the role of domestique which means they bring the protected rider food, water and clothing as needed in addition to pulling as needed. Domestiques can also serve as enforcers. Bike races are not friendly rides through the park. They are often more like a street fight at 20- 30 miles per hour. Having a tough, fearless rider at your side can be a good way to keep out of unwanted trouble.
So the teammates of Lance Armstrong hardly ever become household names and the mainstream hardly ever knows that riders like Lance can never get the fame and fortune without a team that is completely dedicated, who commit complete self sacrifice to their captain's success. . Also, each team member supports the protected rider in the way that they are best suited to do so. A big heavy sprinter is no good for helping a protected rider get over a climb. But he can usually pull though flat sections of road for miles and miles. The domestiques are truly the unsung hero's of the race.
I've said it before in this blog and I will say it again; I have an awesome team. I doubt I could get through this without the help of so many people. First and foremost is the chickenhawk who is putting so much aside to help me, but also lots of other folks. I will keep writing about specific members my support group but today I wanted to write about my feelings toward the team.
It is great to me that everyone that is stepping up is able to contribute in a way that feels meaningful to them and best suits their skills. I have massage therapists, moms who make meals, guys who come over and install hot tubs, or do other "blue jobs." Many just come over to stay close to me, help me through moments of pain, bring me food and water and give encouragement by listening and talking about life. Others take me to doctors appointments. I have also received some awesome art from the kids in the community. I also have a financial committee forming who will help with fundraising and planning for bridging the gap in our financial situation.
I have often listened to, or read, the post-race winners' interviews. It is not uncommon for a winner to say that he put in the final winning effort out of a desire to deliver a win for the team after they have given so much support during the race. These are the riders that I think have true panache. I am really starting to understand that sentiment. I have been given so much support by so many people that I have an overwhelming desire to do my very best, to reach deep into my suitcase of courage and deliver nothing short of a win.
Sunday, March 2, 2008
Finding the Path
This is a trail that I have never been down. I have read stories and talked to others that have been here but the bottom line is that the cancer journey is a unique for each individual and family that goes down it. Last night Jen gave the chickenhawk and I something to help us on our way.
Jen and Randy were up in Whistler B.C. for a ski trip while we were in the diagnosis phase. We are really close with them but chose not to tell them about what was going on because we did not want to impact their trip. While Jen was up there she was consistently drawn to a set of earrings that are little inukshuks. She wasn't sure who she was buying them for but she bought them and brought them home. When she got home, of course we gave her the news about the cancer. She knew then that the inukshuks were for the chickenhawk and I.
The inukshuk is a significant symbol four us. Click this link to learn about the inukshuk. Here is a quote from that site.
The Inukshuk (pronounced IN-OOK-SHOOK) meaning "in the image of man", are magnificent lifelike figures of stone which were erected by the Inuit people and are unique to the Canadian Arctic. Standing along Canada's most northern shores, they endure as eternal symbols of leadership, encouraging the importance of friendship and reminding us of our dependence upon one another. In the Baffin region of Canada's Arctic, the traditional meaning of an Inukshuk was to act as a compass or guide for a safe journey. The Inukshuk, like ancient trackers, helped guide people seeking their way through the wilderness. An Inukshuk on land with two arms and legs means there is a valley. At the end of this valley, you will be able to go in two directions. Today, this serves as a reminder that we always have a choice in the direction we choose to take in our lives. Erected to make the way easier and safer for those who follow, an Inukshuk represents safety and nourishment, trust and reassurance. The Inukshuk guided people across the frozen tundra and gave them hope in barren places to handle hardships they encountered. These primitive, stone images showed the way ahead... pointing you in the direction you wanted to go. Had they been able to speak, I am certain they would have said... "Here is the road. It is safe. You can meet the demands that this path holds. You can reach your goals and attain your vision of where you want to be."
Jen took the two earrings and separated them into individual necklaces for both of us. A very thoughtful gift.
I am doing mostly OK I am very tired most of the time. It is a side effect of the thalidomide. I am experiencing a lot of pain. My left clavicle seems to be losing structural integrity. My back and shoulder are reshaping around the noodley bone and it is quite painful. My attitude is still good but I am just plain sleepy most of the time.
I know that many of you are wanting to know as much as you can about what is going on. If you have questions for me, please leave them in the comments section of this post and I will either answer them in the comments or in my next post.
Tommy came over this morning and hung out with me while the family went out. It was great to hang with him.
I also want to say thanks to Randy for coming over last week and hanging a new door on the girls room. There he is in the dark after a long day at work, helping a buddy out. I truly am a lucky guy.
Thanks for reading.
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