Most of my posts over the last two years have focused on my cancer care but today I thought I would just post a little note that has nothing to do (directly) with my cancer survivor-ship. Today I want to talk about the joys of dawdling on your bike.
Growing up I was on my bike - a lot. When I was about 8 and wanted a new bike, I "accidentally" left my bike neatly hidden behind one of the cars so that my dad backed up over it, thereby opening up the door to a new bike purchase. As a parent, I now realize what a horrible moment it must have been for my dad when he heard the crunch and wondered if he had just run over his son along with his bike. To his credit, he was pretty civil about the whole thing. I was just excited about having the perfect excuse to get a new bike! I don't think of myself as being very Machiavellian but looking back on that episode it seems pretty diabolical. Anyway, back to the main subject. Growing up, I spent a lot of time on my bike. I would cruise around the neighborhood and the rides were typically very short - a mile or perhaps two. As I got older and had various activities outside of the immediate neighborhood I would ride my bike to them and started to get a sense for biking as its own activity, not as simply transportation. I never entered a bike race growing up as there was no organized youth cycling program in my town when I was a kid but I did enjoy riding hard on the bike. After college I started getting back into biking, mostly as part of a being a triathlete. And with that transition, bike riding started to get a lot more structured. I got a bike computer and starting recording distance, average speed, perceived intensity, etc. That was about 30 years ago and to this day I still track lots of information about my bike rides. But one of the things that I've lost a bit is the joy and spontaneity of just putzing around on my bike. As with many other things in my life, Susan came to my rescue on this and has coached me to - every once in a while - just get on the bike and fart around. Don't worry about the distance, don't worry about how hard you're working. Saturday was just such a day. The weather was gorgeous and there were a ton of people outside, walking, running, biking, gardening, etc. Susan and I got on the bikes and wandered over east of where we live. No big hills, not much traffic, nothing special to see. We just dawdled. Took a break halfway through the ride for a little snack and ended up being on the bikes for a couple of hours. It was just a really nice bike dawdle. It was definitely a zone-1 (zone-0?) ride but I've learned (or re-learned) that it's OK to do that sort of ride once in a while. At the end of the day, if every time you get on your bike it's a death march, you're probably not going to enjoy riding your bike at some point. And that would be A Bad Thing.
So the lesson for the day is to to make sure to remember that bike-dawdling is an essential part of the whole bike experience. Once in a while make a serious commitment to dawdle on your bike. Whether you're in a group or riding solo, embrace the dawdle and I think you'll find yourself smiling throughout the entire ride!
Monday, March 26, 2012
Sunday, February 19, 2012
A great Valentine's Day
Last Tuesday was a pretty special Valentine's Day for me. The first big good news was that I got my CT results and everything looked normal. It was 2 Valentine Days ago when I had some suspicious bumps in my neck. I didn't tell Susan about them because I didn't want to spoil the day. But inside I was worried that there might be some trouble brewing in my neck. A couple of days later I went to the doctor and started down this fun trail called living with cancer. So to be demonstrably more healthy in 2012 than 2010 was certainly a great part of the day.
The other really awesome part of the day was getting some original art as a present from Susan. Every once in a while - usually to commemorate some milestone in our lives - Susan will write some original prose or poetry. I can do nothing like that and to me it's always an amazing gift when she creates one of these pieces. Here is the gift I received this Valentine's Day. Read this and you can see what a lucky guy I am to have such love in my life and have it expressed so beautifully.
The other really awesome part of the day was getting some original art as a present from Susan. Every once in a while - usually to commemorate some milestone in our lives - Susan will write some original prose or poetry. I can do nothing like that and to me it's always an amazing gift when she creates one of these pieces. Here is the gift I received this Valentine's Day. Read this and you can see what a lucky guy I am to have such love in my life and have it expressed so beautifully.
The Perfect Man
I tried to make the perfect man
of clay and hair and cloth -
I pulled his limbs
long and strong,
smoothed his head
into a faultless shape to lock out all unhappiness.
I lit him with a match.
His eyes kindled,
And he listened, really listened.
He always got his proper nouns right
He had no bumps and bruises,
Didn't need to figure anything out
or fight because
he had everything he needed.
But he had a problem -
He couldn't say anything that I hadn't taught him,
He didn't know anything that I didn't know.
His heart had not been cracked
By terrifying fate -
he had no grace or courage,
having endured no hardships.
He wasn't you.
I shelved my statue
and forgot about him,
to seize our love, in all its craziness.
I exploded with
wild happiness, grief,
broken skin
unbridled laughter
unexpected white truffles
the cat's paws in first snow
the scent of an unimagined shore.
to George with love from Susan
Valentine's Day, 2012
Thursday, February 16, 2012
2 year survivor!
Well, I'm two years old today. IOW, I'm a two year cancer survivor today. Looking back at my early posts brings home the fact that it's been a hell of a ride. I like the concept of being two years old because in many ways, that's where I feel like I am with all this cancer stuff. Like most 2 year olds, I'm pretty well behaved. But I get cranky at times or suddenly get exhausted and want a good nap. Sometimes I just throw a total shit fit (see my previous post about waiting to get my CT results).
I read stories about cancer survivors and they sound like they've received some great philosophical insight, have been given some great gift that have changed their lives for the better. Well, I wish I had their kind of cancer. And at some level, I think that anyone that says that is totally full of shit and is putting on some lame ass marketing program so the rest of the world can see how cool they've become. I don't believe it, to be honest with you. For me, the whole experience has been one I would never, ever wish on another person and I'd be extremely happy to have never had. Oh, sure, I've learned some things about the world that maybe I didn't really understand before. Here's the list of things I've learned:
So have I been changed by the process? Absolutely. For the better? Physically, definitely not. Emotionally? Probably a toss up. Maybe I've got some more wisdom but I've also had a lot more sadness and loss.
But the big, big lesson that I'm enjoying today is that I'm still here. I love my family, I have a great circle of friends, my health seems to be improving and I can visualize a reality in which I'm here in this existence for many years. I still have many things to do in this world and I'm not anywhere near ready to go on. So today I'm happy. Happy to be here, happy to be more or less healthy, happy to be typing this note to you, whenever you read it.
Sometimes I feel like closing with some advice, or some pithy comment. Not tonight. I'll just end here and tell you that I've got another blog coming tomorrow that is a great example of some of the great, wonderful things I have in my life. Bonsoir!
I read stories about cancer survivors and they sound like they've received some great philosophical insight, have been given some great gift that have changed their lives for the better. Well, I wish I had their kind of cancer. And at some level, I think that anyone that says that is totally full of shit and is putting on some lame ass marketing program so the rest of the world can see how cool they've become. I don't believe it, to be honest with you. For me, the whole experience has been one I would never, ever wish on another person and I'd be extremely happy to have never had. Oh, sure, I've learned some things about the world that maybe I didn't really understand before. Here's the list of things I've learned:
- Love is important. Without it, life is pretty shitty. With it, life is pretty awesome.
- Family is important. Probably a repeat of the previous item but worth its own bullet point. As rough as things have been over the last two years, without family it would have been way worse.
- I'm tough. Stubborn, courageous, tenacious as well. And oh yeah. I've been plenty scared, angry, worried, anxious, depressed and beaten down over the last two years.
- I'm sad that my body has been damaged by this process. I've always liked my body and it's enabled me to do a bunch of fun things in the world. Here is the list of things that have gone wrong with my plumbing:
- blood clot in my left arm, probably from the power port I had inserted into my left pectoral area in the spring of 2010. But perhaps from all the blood draws I had in my left arm in 2010. I can't swim more than about 200 yards of freestyle without my left hand turning purple from lack of blood return flow in my left arm.
- Fractured T7 vertebrae in my back from low bone density caused by prednisone.
- Lung damage from bleomycin toxicity
- Peripheral neuropathy in my toes
- Various skin sores, rashes
- Scar tissue in my left neck area from the cancer in my lymph nodes
- Reduce aerobic capacity caused by the anemia which in turn is being caused by the SGN-35 chemo I'm getting.
- Have lost my taste for most fish, can't eat red meat, don't like cheese any more, beer and alcohol are less fun
- I'm either a very spiritually advanced person or a complete rookie. I've though a lot about dying and what's next. I believe there is something next but I don't have a strong idea of what it's like. I'm scared that what's next might mean being separated from my family forever. That would suck. But the whole thought exercise of dying hasn't driven me towards any need for more organized religion or some great epiphany about how I should live my life. Maybe those insights are still to come.
- Life is good. Like, really good. And precious, Oh, so precious.
- I am not ready to die. Not by a long shot. Maybe when I'm 85 and my body is really broken down I'll be ready for the next thing. But not now.
- I can understand how people give up on living. I think if your body is f__ked up enough, for long enough, and you hurt for long enough, I can see how you'd be ready to let go of this existence and move on to the next thing, whatever that might be. Especially if people that you really love (aka your spouse) has already moved on. My mom lived for 13 years after my dad died and she thought about him every day and missed him every day. I get that. At some point, I think my mom was happy to die because she really believed that she would get to be back with my dad. I hope that's true and that they are in some existence right now, surf fishing together. Minus the part where my mom hooks my dad in the nose with a big ass lure because of an errant cast. True story. Or perhaps she's busy hooking a seagull with an errant cast. Another true story. And my dad gets to capture the seagull, wrap it in a jacket (hard to do, but important when the seagull is struggling) and uses his needle nose pliers to cut the barb off the hook. This is a reminder that you should always, always have your multi-tool with you. In this life or any other existence you might be in.
- Having people die that you know is bad. Really bad. The closer they are to you, the worse it is. But really, it doesn't take much for you to feel close enough to someone that when they die, it feels like someone has punched you in your private parts, puked down your shirt and thrown broken glass into your eyes. Yeah, it's that bad. I've known a couple of people with cancer that have died. And perhaps a 3rd one that I've lost track of. Which begs the question, what is the social etiquette of trying to track someone down just so you can find out if they're dead (yet)? I haven't figured that one out yet so I haven't tried to figure out what's going on with Reuben. But I think about him a lot and hope he's OK and wonder if I'm a chicken shit because I'm not tracking him down or just being respectful of his family's privacy. More the former than the latter, I think.
- I like to exercise. I need to exercise. When I can't exercise, life is harder. And exercise can just mean walking down the hallway a few times. Movement is fundamental to how I live.
- Compassion. Feel like I've maybe got some more of it for people that have cancer. Still need to work on this. Feel less compassionate towards people that worry about problems that don't seem very important to me.
So have I been changed by the process? Absolutely. For the better? Physically, definitely not. Emotionally? Probably a toss up. Maybe I've got some more wisdom but I've also had a lot more sadness and loss.
But the big, big lesson that I'm enjoying today is that I'm still here. I love my family, I have a great circle of friends, my health seems to be improving and I can visualize a reality in which I'm here in this existence for many years. I still have many things to do in this world and I'm not anywhere near ready to go on. So today I'm happy. Happy to be here, happy to be more or less healthy, happy to be typing this note to you, whenever you read it.
Sometimes I feel like closing with some advice, or some pithy comment. Not tonight. I'll just end here and tell you that I've got another blog coming tomorrow that is a great example of some of the great, wonderful things I have in my life. Bonsoir!
Wednesday, February 15, 2012
Another clean CT scan. Joy, happiness, relief
Had another cat scan last Thursday. As always, in the days leading up to the scan I become more and more anxious. Because of the type of Hodgkins I had (nodular sclerosing) it's pretty common to have scar tissue in the nodes affected by the cancer and the follow on chemotherapy. I also had an excisional biopsy in that area to diagnose the disease (look at this for the result of that little adventure) which probably caused some scaring. Because of all of this, the left side of my neck still feels a little funky compared to the right side of my neck. As the time for the next CT scan draws near, I start checking my neck more and more frequently and any little twinges quickly lead me down a path of fear, uncertainty, anger, sadness and general emotional chaos that I have some more malignant cells growing in the war zone that is my left neck. I do lots of visualizations that my cells are happy, healthy and normal. But by the time of the scan, I'm basically a basket case, thinking through how great it will be to get good news and how I will deal with bad news. Good news = happiness, joy, relief, another 3 months of normal living. Bad news = a PET scan (to confirm hypermetabolic activity indicating tumor growth), followed probably by another stem cell transplant. This probably means another leave of absence from work and 3 months of tests, massive chemotherapy, stem cell transplant (basically a transfusion of your own blood), more transfusions for platelets and red blood, nausea, constipation, fatigue, hair loss, possible pulmonary complications and another step down the road of not living so long. In a nutshell, this is stuff that You Don't Want To Do.
As I lay down on the table prepping for the CT scan, I send one final message out to the universe. If you've ever heard of foxhole conversions, this is what happens to me. In the space of about 30 seconds I think about joining every possible religion on the planet and broadcast a heartfelt message to any deities (either at the cellular level, the spiritual level, the n-brane cosmic level, wherever and whenever I can get anyone to listen) that I would really, really, REALLY like to have a clean scan. The actual scan itself is pretty uneventful - it takes about 10 minutes and unlike an MRI machine, the CT machine uses a torus that's about 2 1/2 feet wide inside, so there's no feeling of claustrophobia. After a few minutes of lying there, you're all done.
And now the waiting game starts. The radiologist will read and interpret the scan in about 2 hours. So having had the scan at 11:00 in the morning, it's reasonable to think that by late in the afternoon both the radiologist and the oncologist will have done their thing and I'll get some news. Now the one thing I've learned in these situations is that you don't want to be popular and important. Similar to being popular and important in the ER, being popular and important to your oncologist usually means that Bad Shit Is Happening (To You). So as Thursday afternoon and evening goes by, I try to convince myself that not getting a call probably means good news. And then Friday morning goes by. And then Friday afternoon. Part of me just wants to call the goddamn fucking oncologist and say "WTF!!!!" Don't you know that I am a nervous wreck and that this waiting is turning me inside out. Have you no sense of compassion? Tell me WTF is going on. Or I will drive by your house and smash in all the windows of every piece of your property I can lay my hands on." Well, I didn't really think that but you get the idea. What I did think was that there are people in the same program I'm in that are way more messed up than I am and that probably (PROBABLY) everything is fine and I should just chill out. So I wait all weekend and do a pretty good job of not getting too spun up about the uncertainty. So Monday morning I finally crack and send a little note to my oncologist saying "hey, just btw, how did my scan turn out?" Cuz, you know, I am an uber-cool and with-it guy and I am totally not rocked by the fact that these test results will have a major impact on you, know, like THE REST OF MY LIFE. So you know, if you could just FUCKING LET ME KNOW WHAT THE FUCK THE TEST RESULTS ARE, that would be really, really nice. And 10 minutes later - bing! I see e-mail from my oncologist. So, with my junk pulled up into my throat, I click the link to read the message. And she says - "I'm not working today, I'll look at your results tomorrow." And I'm immediately relieved that at least it's not bad news. And then I think, wtf, wtf, WTF, WTF!!! Now I have to wait until tomorrow morning? Crap, shit, fuck, damnit to hell. I just want to know. But I sort of don't want to know. Because knowing could be really good. Or it could be really bad. So not knowing is sort of better than knowing because you can sort of trick yourself into feeling ok. But that trick doesn't really last long and then you're just back to being anxious and nervous.
So - sigh. Another night of waiting. I meditate before going to sleep and work to get centered and convince myself that whatever happens, it's really not the end of the world. There are lots of treatments still available to me and because I can't feel any giant lymph nodes, if there is some malignancy there, it's not super advanced. Surprisingly, I sleep pretty well Monday night. Tuesday I am on campus doing some job recruiting and am just waiting for the damn phone to ring so I can get this chain off my neck. And finally, about 1:30 I get the call. And in 15 seconds I know that everything is good. No signs of abnormal structural changes, everything looks fine. And the world is suddenly a beautiful, happy, awesome place to be. Relief, joy, giddy happiness, exultation. And also emotional exhaustion. Worrying is really hard work! It feels like I just ran a marathon. And of course, you get off the phone and the world continues on like nothing has happened. Business meetings continue, people still type away at their keyboards and chat on the phone. Part of me wants to run down the halls at work screaming that I've just been given another 3 months of healthy living. But another part of me just wants to be a normal person at work. Of course, I can sit in a meeting, read my e-mail, do some work in my office and then drive home to dinner. I am a normal, healthy person. I can do normal stuff. I am not about to go through six months of invasive medical procedures that may or may not save my life. Nope, not me. I'm just an average guy with no life threatening illness sitting in the wings waiting to rip everything I hold dear away from me and plunge me into an abyss of - what? Nope, don't have to worry about that because That Is Not ME. Or at least not me for another 3 months.
So as crazy as these last few paragraphs sound, I believe that I'm relatively calm compared to some people in this situation. So know that if someone is waiting for these kinds of test results, they are undoubtedly a giant mess of emotional angst inside. So give them a hug, get them a beer or maybe give them a little break in life because trust me; if you've never gone through this, you have no idea how scary it is or how brave they are being just by putting one foot in front of the other and trying to live a normal life with this giant safe poised above their head, ready to either disappear or come crashing down on their head.
So, I'm doing well! Another couple of posts to catch up on some other thoughts but I'll stop this one here. Thx for reading and sorry for the foul mouthed potty words.
As I lay down on the table prepping for the CT scan, I send one final message out to the universe. If you've ever heard of foxhole conversions, this is what happens to me. In the space of about 30 seconds I think about joining every possible religion on the planet and broadcast a heartfelt message to any deities (either at the cellular level, the spiritual level, the n-brane cosmic level, wherever and whenever I can get anyone to listen) that I would really, really, REALLY like to have a clean scan. The actual scan itself is pretty uneventful - it takes about 10 minutes and unlike an MRI machine, the CT machine uses a torus that's about 2 1/2 feet wide inside, so there's no feeling of claustrophobia. After a few minutes of lying there, you're all done.
And now the waiting game starts. The radiologist will read and interpret the scan in about 2 hours. So having had the scan at 11:00 in the morning, it's reasonable to think that by late in the afternoon both the radiologist and the oncologist will have done their thing and I'll get some news. Now the one thing I've learned in these situations is that you don't want to be popular and important. Similar to being popular and important in the ER, being popular and important to your oncologist usually means that Bad Shit Is Happening (To You). So as Thursday afternoon and evening goes by, I try to convince myself that not getting a call probably means good news. And then Friday morning goes by. And then Friday afternoon. Part of me just wants to call the goddamn fucking oncologist and say "WTF!!!!" Don't you know that I am a nervous wreck and that this waiting is turning me inside out. Have you no sense of compassion? Tell me WTF is going on. Or I will drive by your house and smash in all the windows of every piece of your property I can lay my hands on." Well, I didn't really think that but you get the idea. What I did think was that there are people in the same program I'm in that are way more messed up than I am and that probably (PROBABLY) everything is fine and I should just chill out. So I wait all weekend and do a pretty good job of not getting too spun up about the uncertainty. So Monday morning I finally crack and send a little note to my oncologist saying "hey, just btw, how did my scan turn out?" Cuz, you know, I am an uber-cool and with-it guy and I am totally not rocked by the fact that these test results will have a major impact on you, know, like THE REST OF MY LIFE. So you know, if you could just FUCKING LET ME KNOW WHAT THE FUCK THE TEST RESULTS ARE, that would be really, really nice. And 10 minutes later - bing! I see e-mail from my oncologist. So, with my junk pulled up into my throat, I click the link to read the message. And she says - "I'm not working today, I'll look at your results tomorrow." And I'm immediately relieved that at least it's not bad news. And then I think, wtf, wtf, WTF, WTF!!! Now I have to wait until tomorrow morning? Crap, shit, fuck, damnit to hell. I just want to know. But I sort of don't want to know. Because knowing could be really good. Or it could be really bad. So not knowing is sort of better than knowing because you can sort of trick yourself into feeling ok. But that trick doesn't really last long and then you're just back to being anxious and nervous.
So - sigh. Another night of waiting. I meditate before going to sleep and work to get centered and convince myself that whatever happens, it's really not the end of the world. There are lots of treatments still available to me and because I can't feel any giant lymph nodes, if there is some malignancy there, it's not super advanced. Surprisingly, I sleep pretty well Monday night. Tuesday I am on campus doing some job recruiting and am just waiting for the damn phone to ring so I can get this chain off my neck. And finally, about 1:30 I get the call. And in 15 seconds I know that everything is good. No signs of abnormal structural changes, everything looks fine. And the world is suddenly a beautiful, happy, awesome place to be. Relief, joy, giddy happiness, exultation. And also emotional exhaustion. Worrying is really hard work! It feels like I just ran a marathon. And of course, you get off the phone and the world continues on like nothing has happened. Business meetings continue, people still type away at their keyboards and chat on the phone. Part of me wants to run down the halls at work screaming that I've just been given another 3 months of healthy living. But another part of me just wants to be a normal person at work. Of course, I can sit in a meeting, read my e-mail, do some work in my office and then drive home to dinner. I am a normal, healthy person. I can do normal stuff. I am not about to go through six months of invasive medical procedures that may or may not save my life. Nope, not me. I'm just an average guy with no life threatening illness sitting in the wings waiting to rip everything I hold dear away from me and plunge me into an abyss of - what? Nope, don't have to worry about that because That Is Not ME. Or at least not me for another 3 months.
So as crazy as these last few paragraphs sound, I believe that I'm relatively calm compared to some people in this situation. So know that if someone is waiting for these kinds of test results, they are undoubtedly a giant mess of emotional angst inside. So give them a hug, get them a beer or maybe give them a little break in life because trust me; if you've never gone through this, you have no idea how scary it is or how brave they are being just by putting one foot in front of the other and trying to live a normal life with this giant safe poised above their head, ready to either disappear or come crashing down on their head.
So, I'm doing well! Another couple of posts to catch up on some other thoughts but I'll stop this one here. Thx for reading and sorry for the foul mouthed potty words.
Saturday, December 31, 2011
Happy New Year!
Well, in a few hours it will be 2012 here in Colorado so I thought I would muse a bit on the year gone by. It's been a hard year with some serious medical hurdles to clear - as you, my faithful blog reader have seen through my blog posts. The big upside to this year is that I am demonstrably healthier than I was last year at this time ("Look, mom - no bumps on my neck"!). I'm involved in a clinical trial for a new antibody therapy drug called Adcetris which does cause my hematocrit to trend downwards so my athletic performance still isn't back to anywhere near where I was pre-cancer. But by all normal measurements I'm pretty healthy - going to work full time, exercising several times a week, eating and sleeping normally, able to travel for business, etc. I'm looking for 2012 being a year of continued good health, some good work at my current job and getting more involved in LIVESTRONG biking and cancer support activities. For the occasional blog reader and to help me get some sense of closure, here's a summary of what the year felt like to me.
January - uggh. Pretty depressed with the news of the recurrent Hodgkins. Go through a battery of tests to make sure I can tolerate more chemo. Start chemotherapy. Start to learn about stem cell transplants (basically a transfusion of your own blood after getting blasted by high dose chemotherapy).
February - Complete initial chemotherapy. Very positive response to the chemotherapy so this buoys my spirts quite a bit. Get some time off between the chemotherapy and the start of the stem cell therapy process. Try to get as healthy as possible for the upcoming shit storm.
March - The chemo gauntlet is thrown down. Harvest bone marrow stem cells, then blasted with high dose chemotherapy. Bye bye, immune system. And hopefully, bye-bye cancer. Then on March 28th, my "2nd birthday". I get back my own stem cells and start to rebuild my immune system. At the end of this month we get the sad news that Socrates has passed away, probably from some sort of pancreatic illness. Just another "fuck-you" that the universe cares to throw at us. Starting to feel like my middle name is Job. But wait, there's more...
April - The missing month. 32 days in a row of staying in the house, only going out for walks around the neighborhood or to visit the doctor's office or hospital every day. Multiple transfusions of platelets and red blood cells. Lose 12 lbs in 4 days. Chemo makes my entire GI tract - from mouth to anus - feel pretty unhappy. Pick up some small infection but given my non-existent immune system, I have to get treated with 5 infusions a day for 10 days. This starts at 5:30 am and ends at 11:00. At home. All done by Susan. While I try not to puke or pass out from various things. My workouts are reduced to doing laps on the 2nd floor of our house. Susan earns Wonder Woman status for being with me through all of this. There are angels living among us and I am very lucky to have one as my wife. I build up a debt of about 64,000,000 chick flicks I will need to go see to pay her back for everything she has done for me.
May - Coming back to life. Get back to work, immune system reboot complete, a bit more exercise. Platelets, reds and whites are all reasonably happy. I get back on the bike and rejoin the human race. At the end of the month we welcome a new member into the family - Athena joins us as our next generation philosopher cat. Another sign of returning to life...
June - More improvements in health. Manage to ride on a team that does the 24 hours of eRock. Am probably in the 95% percentile in terms of lap speeds for participants in the race. Receive many pity votes going up the one hill ("you're doing great!") as people stream by me. Resist the urge to put bike pump in spokes of passing well wishers. Susan's legend gains a new entry as she super-mans on the course at 5:30 am and comes into the transfer station covered in blood. My Woman of Steel gets patched up and returns to the race course to do another lap. I am SO HAPPY to be able to ride my bike with friends and not get sick or crash or throw up or pass out or... But I long for the days when I was not in the bottom 5% of bike riders in terms of speed around the course.
July - Steady progress on all fronts. Training for the Copper Triangle and the BStrong rides in August. Lots of work upheaval with management structure changes. Check my neck about 30 times a day, waiting for the return of the dreaded bumps indicating the cancer has come back and is trying to kill me. Living under the cancer Sword of Damocles. Join a men's support group and we chat about our mortality, fears, hopes, emotions. Anger, fear, sadness, enlightenment. A pretty intense hour every week for six weeks. A good group of guys and I hope they all are around for a long period of time. During the six week period, one of them gets a diagnosis that his multiple myeloma as returned and another ends up back in the hospital, probably related to his leukemia. Nothing casual about the events in the lives of these guys. As always, it's good know that there other people in the same shit storm as you but it's still hard work to sit down and share the ups and downs of this kind of experience.
August - Great success at both the Copper Triangle and BStrong rides. I finish both of them and get to celebrate each success with friends and family. CAT scan shows no new growths in my lymph nodes. Yeah! However, towards the end of the month I start to develop some sort of illness - spiking fevers after I exercise. Uh-oh...
September - Despite fears of some sort of infection getting a hold of me, we travel to Bozeman to see Caitlyn. I end up getting a bit sicker while there and we decide to come back a bit early. We had a good time visiting for about 5 days in total but I'm scared that I'm sick again. My lung function doesn't feel great and I'm worried that my immune system is in trouble. Get back to Denver, do some pulmonary tests and my lung function is actually better than in February. I start an anti-bacterial medicine that seems to get a handle on whatever is making me sick and I gradually get over whatever it is. So now you're sick, now you're better, we don't know what it was but don't worry. Am reminded again that despite all the advances in medicine it's still a bit of an imprecise science.
October - Settling into a pretty nice routine. The SGN-35 protocol makes me a feel a bit fatigued but in general I'm tolerating it ok. I develop a couple of skin rashes that no one can completely explain. Start doing some more heavy duty business traveling with no side effects. Starting to get nervous about my next CAT scan.
November - Another normal CAT scan. Yeah! Enjoying life and trying to be patient with the fact that I'm on a 21 day blood chemistry roller coast. Get the SGN-35 on day 1, feel ok for a couple of days, then feel a bit fatigued for 4-6 days, then gradually improve until day 21, then start it all over. Get a small head cold and get over it without any medical intervention. Yeah! My immune system is functioning ok...
December - Get another rash. No one knows what it is. Gradually it goes away. SGN-35 roller coaster continues, although on December 19th my 'crit is > 40 - the first time this has happened since December of 2010. Awesome holiday times with family coming in from all over the world. Still working through intermittent periods of anger, fear and sadness but the good moments far out weigh the bad.
And speaking of good moments, I have to wrap this up and head out for a Near Year's Eve celebration. I hope your 2012 is full of good friends, family, love and good health. Cya on the bike/hockey rink/soccer field!
September
January - uggh. Pretty depressed with the news of the recurrent Hodgkins. Go through a battery of tests to make sure I can tolerate more chemo. Start chemotherapy. Start to learn about stem cell transplants (basically a transfusion of your own blood after getting blasted by high dose chemotherapy).
February - Complete initial chemotherapy. Very positive response to the chemotherapy so this buoys my spirts quite a bit. Get some time off between the chemotherapy and the start of the stem cell therapy process. Try to get as healthy as possible for the upcoming shit storm.
March - The chemo gauntlet is thrown down. Harvest bone marrow stem cells, then blasted with high dose chemotherapy. Bye bye, immune system. And hopefully, bye-bye cancer. Then on March 28th, my "2nd birthday". I get back my own stem cells and start to rebuild my immune system. At the end of this month we get the sad news that Socrates has passed away, probably from some sort of pancreatic illness. Just another "fuck-you" that the universe cares to throw at us. Starting to feel like my middle name is Job. But wait, there's more...
April - The missing month. 32 days in a row of staying in the house, only going out for walks around the neighborhood or to visit the doctor's office or hospital every day. Multiple transfusions of platelets and red blood cells. Lose 12 lbs in 4 days. Chemo makes my entire GI tract - from mouth to anus - feel pretty unhappy. Pick up some small infection but given my non-existent immune system, I have to get treated with 5 infusions a day for 10 days. This starts at 5:30 am and ends at 11:00. At home. All done by Susan. While I try not to puke or pass out from various things. My workouts are reduced to doing laps on the 2nd floor of our house. Susan earns Wonder Woman status for being with me through all of this. There are angels living among us and I am very lucky to have one as my wife. I build up a debt of about 64,000,000 chick flicks I will need to go see to pay her back for everything she has done for me.
May - Coming back to life. Get back to work, immune system reboot complete, a bit more exercise. Platelets, reds and whites are all reasonably happy. I get back on the bike and rejoin the human race. At the end of the month we welcome a new member into the family - Athena joins us as our next generation philosopher cat. Another sign of returning to life...
June - More improvements in health. Manage to ride on a team that does the 24 hours of eRock. Am probably in the 95% percentile in terms of lap speeds for participants in the race. Receive many pity votes going up the one hill ("you're doing great!") as people stream by me. Resist the urge to put bike pump in spokes of passing well wishers. Susan's legend gains a new entry as she super-mans on the course at 5:30 am and comes into the transfer station covered in blood. My Woman of Steel gets patched up and returns to the race course to do another lap. I am SO HAPPY to be able to ride my bike with friends and not get sick or crash or throw up or pass out or... But I long for the days when I was not in the bottom 5% of bike riders in terms of speed around the course.
July - Steady progress on all fronts. Training for the Copper Triangle and the BStrong rides in August. Lots of work upheaval with management structure changes. Check my neck about 30 times a day, waiting for the return of the dreaded bumps indicating the cancer has come back and is trying to kill me. Living under the cancer Sword of Damocles. Join a men's support group and we chat about our mortality, fears, hopes, emotions. Anger, fear, sadness, enlightenment. A pretty intense hour every week for six weeks. A good group of guys and I hope they all are around for a long period of time. During the six week period, one of them gets a diagnosis that his multiple myeloma as returned and another ends up back in the hospital, probably related to his leukemia. Nothing casual about the events in the lives of these guys. As always, it's good know that there other people in the same shit storm as you but it's still hard work to sit down and share the ups and downs of this kind of experience.
August - Great success at both the Copper Triangle and BStrong rides. I finish both of them and get to celebrate each success with friends and family. CAT scan shows no new growths in my lymph nodes. Yeah! However, towards the end of the month I start to develop some sort of illness - spiking fevers after I exercise. Uh-oh...
September - Despite fears of some sort of infection getting a hold of me, we travel to Bozeman to see Caitlyn. I end up getting a bit sicker while there and we decide to come back a bit early. We had a good time visiting for about 5 days in total but I'm scared that I'm sick again. My lung function doesn't feel great and I'm worried that my immune system is in trouble. Get back to Denver, do some pulmonary tests and my lung function is actually better than in February. I start an anti-bacterial medicine that seems to get a handle on whatever is making me sick and I gradually get over whatever it is. So now you're sick, now you're better, we don't know what it was but don't worry. Am reminded again that despite all the advances in medicine it's still a bit of an imprecise science.
October - Settling into a pretty nice routine. The SGN-35 protocol makes me a feel a bit fatigued but in general I'm tolerating it ok. I develop a couple of skin rashes that no one can completely explain. Start doing some more heavy duty business traveling with no side effects. Starting to get nervous about my next CAT scan.
November - Another normal CAT scan. Yeah! Enjoying life and trying to be patient with the fact that I'm on a 21 day blood chemistry roller coast. Get the SGN-35 on day 1, feel ok for a couple of days, then feel a bit fatigued for 4-6 days, then gradually improve until day 21, then start it all over. Get a small head cold and get over it without any medical intervention. Yeah! My immune system is functioning ok...
December - Get another rash. No one knows what it is. Gradually it goes away. SGN-35 roller coaster continues, although on December 19th my 'crit is > 40 - the first time this has happened since December of 2010. Awesome holiday times with family coming in from all over the world. Still working through intermittent periods of anger, fear and sadness but the good moments far out weigh the bad.
And speaking of good moments, I have to wrap this up and head out for a Near Year's Eve celebration. I hope your 2012 is full of good friends, family, love and good health. Cya on the bike/hockey rink/soccer field!
September
Thursday, November 24, 2011
Happy Thanksgiving! And hi-tech kitty making phone calls
Susan's off singing at church so this morning it's just me and the cat kicking around the house. As is fairly typical of most families, we spent a bit of time this morning on the phone catching up with remote relatives. Caitlyn gave Athena a call and got caught up on the goings on of Mrs. Grimsby-Whiskers, aka Knives Chow, aka Athena Popidopalus Florentine. When you don't have an oppose-able thumb it's a bit tough to hold a phone but the Bluetooth headset works pretty well as long as you stay still in your kitty bed:
I for one am pretty happy to be not dying of lymphoma. That's pretty cool! I've dropped that line on people a couple of times this week and it's a bit of a conversation stopper so I guess I should mellow it out a bit. Maybe something like: "Yeah, I've got a lot to be thankful for this season." So here's my list of things I'm thankful for, in perhaps something like priority order:
BTW, Athena is a bit shy about giving out her cell phone # so I'm afraid I can't share that with you. If you need to chat with her, drop Susan and I a note and we'll see if we can get her to call you back. No promises, though :)
I for one am pretty happy to be not dying of lymphoma. That's pretty cool! I've dropped that line on people a couple of times this week and it's a bit of a conversation stopper so I guess I should mellow it out a bit. Maybe something like: "Yeah, I've got a lot to be thankful for this season." So here's my list of things I'm thankful for, in perhaps something like priority order:
- Not dying. Yup, that's #1, for sure
- Loving family (including the high-tech kitty pictured above)
- Great friends, both socially and at work
- Riding my bikes
- Hair
BTW, Athena is a bit shy about giving out her cell phone # so I'm afraid I can't share that with you. If you need to chat with her, drop Susan and I a note and we'll see if we can get her to call you back. No promises, though :)
Sunday, November 13, 2011
Dodging the Sword of Damocles - another clean CAT scan
Well, it's been 3 months since my last post. So - hello! Life is going pretty well and we had another big milestone this past week so I wanted to update all of you with the good news.
First and most importantly, I had another clean CAT scan. This means that there are no obvious malignancies growing in my lymphatic system. It's hard to describe in words how thankful I am for this result and how anxious I've been about the results. The left side of my neck has never felt the same since I had the excisional biopsy in February of 2010 and with all the lymph node malignancies and scarring in my lymph system, the lymph chain in the left side of my neck is anything but normal. From all this trauma, I occasionally get little twinges when I turn my neck, do anything with weights over my head, etc. So of course, anytime this happens I immediately worry that it's a sign that my lymph nodes are getting inflamed with new cancerous cell growth. I've been going into the doctor every 3 weeks for a dose of SGN-35 and every time they check my neck and assure me that things feel normal. So there really was no reason to think that bad things were happening in my neck, but I spent most of the last month or two worrying that I was going to be back where I was last December - feeling ok but actually getting sick again with more cancer.
So you want to talk about an anxious moment - the phone rings and the caller id says it's the hospital. And you know, without doubt, that the next 30 seconds are either going to bring really good or really bad news. Good news, life goes on normally. You can go to work, ride your bike, be with your family. And the odds go up that you might be around for a while. Bad news and another bomb detonates in your life. More chemo, another stem cell transplant, stop work, financial insecurity for your family, feel like shit for months, and the odds of death in the not too distant future ramp up. All that as a result of answering one phone call. So, a big breath and you answer the phone. The temptation is to not answer but that obviously doesn't change anything. And the news is good - a normal scan... And everything in your life is given back to you - your family, your joys, your plans for the future. In this post right after my diagnosis I mused that we're all one phone call away from Really Bad Things. But for me, last Thursday, I was one phone call away from some awesome news. For now, some combination of the chemotherapy I'm taking and my immune system are keeping everything normal. So a huge sigh of relief and life can now go on with some semblance of normalcy. The scariest 10 seconds of the last 3 months resolved into the happiest phone call in the last 3 months. Just like that, everything opens up. Such an intense range of emotions it's difficult to describe. If you've had cancer or been a support person for someone with cancer this all is probably really familiar to you. If you haven't had cancer in your life, be thankful that you don't have this experience - it's not something I would wish on anyone. I've read that some people get to the point where they feel thankful for their cancer or wouldn't change having it because the experience has become part of who they are. Maybe they're more emotionally advanced than I am or maybe it's just a coping mechanism or maybe I'll understand that some day. But for now, I still feel like I Don't Want This Fucking Thing In My Life. But it is and I'll have to deal with these phone calls for the new few years. So one down, more to go!
That's the summary of the intense stuff. A brief update on other things that have been going on for the last couple of months:
trfn!
First and most importantly, I had another clean CAT scan. This means that there are no obvious malignancies growing in my lymphatic system. It's hard to describe in words how thankful I am for this result and how anxious I've been about the results. The left side of my neck has never felt the same since I had the excisional biopsy in February of 2010 and with all the lymph node malignancies and scarring in my lymph system, the lymph chain in the left side of my neck is anything but normal. From all this trauma, I occasionally get little twinges when I turn my neck, do anything with weights over my head, etc. So of course, anytime this happens I immediately worry that it's a sign that my lymph nodes are getting inflamed with new cancerous cell growth. I've been going into the doctor every 3 weeks for a dose of SGN-35 and every time they check my neck and assure me that things feel normal. So there really was no reason to think that bad things were happening in my neck, but I spent most of the last month or two worrying that I was going to be back where I was last December - feeling ok but actually getting sick again with more cancer.
So you want to talk about an anxious moment - the phone rings and the caller id says it's the hospital. And you know, without doubt, that the next 30 seconds are either going to bring really good or really bad news. Good news, life goes on normally. You can go to work, ride your bike, be with your family. And the odds go up that you might be around for a while. Bad news and another bomb detonates in your life. More chemo, another stem cell transplant, stop work, financial insecurity for your family, feel like shit for months, and the odds of death in the not too distant future ramp up. All that as a result of answering one phone call. So, a big breath and you answer the phone. The temptation is to not answer but that obviously doesn't change anything. And the news is good - a normal scan... And everything in your life is given back to you - your family, your joys, your plans for the future. In this post right after my diagnosis I mused that we're all one phone call away from Really Bad Things. But for me, last Thursday, I was one phone call away from some awesome news. For now, some combination of the chemotherapy I'm taking and my immune system are keeping everything normal. So a huge sigh of relief and life can now go on with some semblance of normalcy. The scariest 10 seconds of the last 3 months resolved into the happiest phone call in the last 3 months. Just like that, everything opens up. Such an intense range of emotions it's difficult to describe. If you've had cancer or been a support person for someone with cancer this all is probably really familiar to you. If you haven't had cancer in your life, be thankful that you don't have this experience - it's not something I would wish on anyone. I've read that some people get to the point where they feel thankful for their cancer or wouldn't change having it because the experience has become part of who they are. Maybe they're more emotionally advanced than I am or maybe it's just a coping mechanism or maybe I'll understand that some day. But for now, I still feel like I Don't Want This Fucking Thing In My Life. But it is and I'll have to deal with these phone calls for the new few years. So one down, more to go!
That's the summary of the intense stuff. A brief update on other things that have been going on for the last couple of months:
- My health in general has been pretty good. In late August I had some bacterial or viral visitors that took up residence in my lungs and were giving me some fevers. A combination of rest, anti-virals and antibiotics seems to have cleared that up. A good event coming out of that incident was that I had another pulmonary function test in early September and it showed that my lung function is very good - better in fact than last January before I had the stem cell transplant.
- The chemotherapy continues to lower my hematocrit which in turn impacts my ability to work out hard. I'm riding and really enjoying being on both my road and mountain bike rides but the social structure of my rides have changed. There are a set of rides and people I can't ride with anymore because I'm not fit enough. Everyone suspects that after I complete this round of chemotherapy my hematocrit will improve but no one's declaring that it will come back to where it was pre-illness. That's pretty sobering but it's probably a 2nd, 3rd or 4th order effect, where the big 1st order effect is that I'm not dying from lymphoma.
- Susan and I are starting to get more excited about doing more cancer survivor related community service. We're in the midst of planning the year for our Livestrong cycling team and we're both looking forward to getting more involved with helping cancer survivors cope with the issues they face as they navigate through the illness and their recovery from it. As you can tell from the amount I talk about riding my bike, it's been a great source of joy for me during this journey and I really think it's helped me manage the illness better from a medical perspective. I'm hopeful that we can share this message with other cancer patients and help them use exercise as a way of improving their quality of life and their disease outcome.
- My hair has grown back. A little less white hair and a bit finer than it used to be but basically my hair. The best part of having hair is that it's evidence that I'm not on any crazy chemotherapy so I love seeing my hair every morning in the mirror!
- I've completed 8 cycles of SGN-35 (usually a dose every 3 weeks) and I've decided to do another 8 doses. That will mean I'll be getting chemotherapy until next May. Which sucks. But I think it gives me the best chance of being disease free for the long term so I'm ready to do the work. It's not a horrible drug in terms of side effects but I do feel it. Some lethargy, various levels of weirdness the first few hours after I get the dose but no big side effects. Since it's a clinical trial they don't have any long term data yet on how this affects survival rates but everyone on my care team is of the belief that as long as I don't get any bad side effects that More is Better. It probably also means that I stand a good change of being protected from any cancer growth in the next 24 weeks so I get 6 months of chemo air cover before I need to face the world without the protection of chemotherapy keeping my immune system intact.
trfn!
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