The big day - Julia and Karen riding ten miles to raise money for cancer research through the Lance Armstrong Foundation - began at 4:30am. The rain fell and the wind blew all night long, and we had a little pre-ride anxiety and energy that made sleeping perilously evasive and too short. But the day was upon us and our little caravan managed to get on the road to Portland by 5:30am. Driving in darkness, on a rain-slick interstate, toward a very predictably wet and miserable ride... almost made me glad to be a spectator. And the confused arrival at the Nike World Headquarters was particularly comical (and would have been even funnier had I been able to disassociate the driving from the directions we received from volunteers directing us hither and yon in order to park the van).
But we made it. And the Nike campus is a beautiful place. We heard Lance give some inspirational words (like, "it's a great thing for all you folks to be here, especially in this kind of weather") and then the riders were off. Well, kind of off... the 100-mile riding group took nearly twenty minutes to slowly ride past the start line, then there were the 70-mile and 40-mile ride groups, and nearly 45 minutes after the first "start" the 10-mile group started. The rain and wind slowed everything down, and caused the entire post-race party to be moved indoors.
After an hour or so, and a small meltdown mid-course, our intrepid duo and their riding group (Team Wildwind) sloshed across the finish line to the cheers and whoops of their supporting crew (dad, two aunts, two grandmas, and one niece). Unbelievably, none of the group actually suffered hypothermia, and they only dripped and squeaked when they moved. :) After a change of clothes, some warm drinks, and some food, they/we enjoyed some of the post-ride atmosphere and then headed back home - tired and weary, but warmly satisfied with accomplishment. Thanks to Team Wildwind - Alison, Steve, Rebecca, Joe, Kimberlee, Julia and Karen - over $6000 was raised. Can we have a whoop-whoop for these riders/fundraisers, please?
From the sidelines, I feel honored to have witnessed this event, and plan to enjoy it myself next year. I think that a 40-mile or 70-mile ride is well within my ability. Let's make that our goal together, OK? And as for an intermittent health report, I have to say that despite the longer recovery this last time, I feel pretty good today. The extensive walking around the expansive Nike campus was tiring, but I got a very nice massage from the trainers there afterwards and consider that a good trade. I am up for treatment #9 (three-fourths done, if my blood work lets this treatment happen on-schedule!) on Wednesday. Living strong can mean so many different things, and does, to everyone that confronts cancer either directly or indirectly. For me, it is seeing the strength in my wife and daughters' eyes as they shivered through the rain and wind to finish the 2007 Livestrong Challenge; it is feeling the passionate support from my family, friends, and colleagues as I struggle with the physical and emotional demands of chemo-therapy; it is knowing that those struggles are mild in comparison with other cancer patients' journeys, and it is reflecting the unique beauty and wonder of life itself and the world that we each experience each and every day. Cancer - the new self-awareness drug for the 21st Century.
Peace to you and yours, and hugs for everyone.
Sunday, September 30, 2007
Thursday, September 20, 2007
A rough day...
What does a "rough day" feel like when you are in chemo-world? I just KNEW you were gonna ask that question. And boy does it feel not great. I have written at some length (or at least several times now) about the quantum physical aspects of chemotherapy. And those effects are slowly magnifying due to the cumulative effect of adding more chemical toxins to my system before my healthy liver and kidneys can eliminate the entire previous dose. Old story - not really worth repeating - except that I am beginning to think that the physical and the emotional aspects of fighting cancer are pretty closely-linked.
Some of you are probably thinking, "well, duh!" OK, I too have said that out loud before, and sometimes even in the context of learning something about myself. ;-) Here is a wonderful opportunity, then, for you all to feel smarter than the cancer patient. Sometimes it is fun to be smug, isn't it?
... Which leads me to describing a different kind of rough day. Sunday morning this week was a very difficult time for me. (Lots of crappy stuff is going on in our extended family and friends support network, including a grandma who broke her hip as a result of a fall, and a great uncle dealing with recurrent cancer that has metastasized, and a dear young friend in hospice care.) Then my wife and I got into an argument about something rather small, right before she was trying to leave the house to drive her Mom to the airport... and it exploded into angst and frustration and not-nice words. To be candid, though, I was pretty crushed by the words. Maybe if my physical self was stronger, and if I wasn't so unsure of my medium-term and longer future, it would have been an easier thing to look past. But in my weaker physical state, and in part because I am already feeling a little fearful about the post-chemo landscape of living, I pretty much fell apart. And only moments later was alone to deal with it - daughter at a friend's house and wife on the road... and unsure of who to talk to (if anyone). For distraction, I went to a friend's house to help with some simple drywall and computer problems that he was having, and helping someone else really helped me.
By the end of the day, tempers had eased and a heart-to-heart talk made everything well. And it's more than likely that this event was closely tied to chemo-brain, which to me is somewhat encouraging. But I am beginning to mistrust my memory and emotions... and I really, REALLY hope that post-chemo will be a MUCH more normal place than chemo is.
Thanks for your continued support, and for reminding me that chemo-world is a not-real place.
Some of you are probably thinking, "well, duh!" OK, I too have said that out loud before, and sometimes even in the context of learning something about myself. ;-) Here is a wonderful opportunity, then, for you all to feel smarter than the cancer patient. Sometimes it is fun to be smug, isn't it?
... Which leads me to describing a different kind of rough day. Sunday morning this week was a very difficult time for me. (Lots of crappy stuff is going on in our extended family and friends support network, including a grandma who broke her hip as a result of a fall, and a great uncle dealing with recurrent cancer that has metastasized, and a dear young friend in hospice care.) Then my wife and I got into an argument about something rather small, right before she was trying to leave the house to drive her Mom to the airport... and it exploded into angst and frustration and not-nice words. To be candid, though, I was pretty crushed by the words. Maybe if my physical self was stronger, and if I wasn't so unsure of my medium-term and longer future, it would have been an easier thing to look past. But in my weaker physical state, and in part because I am already feeling a little fearful about the post-chemo landscape of living, I pretty much fell apart. And only moments later was alone to deal with it - daughter at a friend's house and wife on the road... and unsure of who to talk to (if anyone). For distraction, I went to a friend's house to help with some simple drywall and computer problems that he was having, and helping someone else really helped me.
By the end of the day, tempers had eased and a heart-to-heart talk made everything well. And it's more than likely that this event was closely tied to chemo-brain, which to me is somewhat encouraging. But I am beginning to mistrust my memory and emotions... and I really, REALLY hope that post-chemo will be a MUCH more normal place than chemo is.
Thanks for your continued support, and for reminding me that chemo-world is a not-real place.
Wednesday, September 12, 2007
LiveStrong Challenge newsflash...
I am one lucky guy.
My wife and daughter have decided to *do* something in support of cancer patients and treatments. I mean *do* in the sense of something BEYOND what they are doing for me personally - you know, the putting up with Mr. Cranky-Pants, and Mr. Tired-Beyond-Belief-Man, and Mr. Steroid-Rage-Man; the cooking for Mr. I'm-Not-Hungry-Today and Mr. My-Tummy-Hurts; and the pushing me to see the joy and humor in our wacky world. Besides that, they are raising money in the Lance Armstrong Foundation's LiveStrong Challenge. And they have reached their PERSONAL fundraising goals! This is beyond cool...
Their team (Team Wildwind) will be riding 10 miles on Sept. 30 in Portland, OR. And they are training like wild women for the ride (not that they really need the training, but it's very fun to hear about it and encourage them). And I will be there, cheering the team to the finish line. If you want to see what this is all about, go to:
http://www.livestrong.org/
And click on the "Get Involved" tab, then pick the Portland Challenge from the pulldown menu. It's not too late to contribute to a VERY worthy cause, but you can also just show up to cheer us on too!
Have a great week!
My wife and daughter have decided to *do* something in support of cancer patients and treatments. I mean *do* in the sense of something BEYOND what they are doing for me personally - you know, the putting up with Mr. Cranky-Pants, and Mr. Tired-Beyond-Belief-Man, and Mr. Steroid-Rage-Man; the cooking for Mr. I'm-Not-Hungry-Today and Mr. My-Tummy-Hurts; and the pushing me to see the joy and humor in our wacky world. Besides that, they are raising money in the Lance Armstrong Foundation's LiveStrong Challenge. And they have reached their PERSONAL fundraising goals! This is beyond cool...
Their team (Team Wildwind) will be riding 10 miles on Sept. 30 in Portland, OR. And they are training like wild women for the ride (not that they really need the training, but it's very fun to hear about it and encourage them). And I will be there, cheering the team to the finish line. If you want to see what this is all about, go to:
http://www.livestrong.org/
And click on the "Get Involved" tab, then pick the Portland Challenge from the pulldown menu. It's not too late to contribute to a VERY worthy cause, but you can also just show up to cheer us on too!
Have a great week!
Tuesday, September 11, 2007
Commuting
Last week, after that unscheduled delay to allow my white blood cells/neutrophils a little extra time to recover, we commuted our way back to chemo-world. And it's taken me a little less than a week to recognize that I am not sure I like that commute. Let's be clear, now, I have had my fill of commuting (to high school, then to college, to work, etc.) having grown up in greater Seattle. And I think I tolerated (even enjoyed) those commutes pretty well. Nothing like having some time alone, in your car, with the music/radio of your choice... traveling at 65 mph, bumper-to-bumper with 20,000 other commuters across the Evergreen Point Bridge on your way to a volleyball practice for the fourth time in a week.
But this last time commuting up to the clinic felt different. To be sure, I am actually volunteering to drive 75 minutes each way (always in traffic, it seems) in order to (a) get the highest quality treatment for colon cancer that I can and (b) to help with a clinical trial determining the additional benefit that a monoclonal antibody (cetuximab) might have over the current gold standard treatment. I do not regret this decision in the least. But I now realize that I am not looking forward to that 75 minute commute, and last week's commute did not feel good to me. I no longer feel completely confident that my body is capable of supporting the treatment each time, though I know that my team of physicians and nurses are carefully watching over my health. I am recovering from the treatments far more slowly than before, and find the tiredness to be unrelenting. And I know that each trip to the clinic is the beginning of another round of fatigue, and interesting GI behavior, and crankiness.
I know that this, too, shall pass. The next five treatments will eventually be over, and I will (slowly?) return to something akin to a normal life. Commuting will only seem to be a hassle again, and something that I am happy to be able to choose to avoid in my life. And eventually our little family may forget how long (and short) this treatment regimen was. But in the meantime, there are those five commutes to endure...
But this last time commuting up to the clinic felt different. To be sure, I am actually volunteering to drive 75 minutes each way (always in traffic, it seems) in order to (a) get the highest quality treatment for colon cancer that I can and (b) to help with a clinical trial determining the additional benefit that a monoclonal antibody (cetuximab) might have over the current gold standard treatment. I do not regret this decision in the least. But I now realize that I am not looking forward to that 75 minute commute, and last week's commute did not feel good to me. I no longer feel completely confident that my body is capable of supporting the treatment each time, though I know that my team of physicians and nurses are carefully watching over my health. I am recovering from the treatments far more slowly than before, and find the tiredness to be unrelenting. And I know that each trip to the clinic is the beginning of another round of fatigue, and interesting GI behavior, and crankiness.
I know that this, too, shall pass. The next five treatments will eventually be over, and I will (slowly?) return to something akin to a normal life. Commuting will only seem to be a hassle again, and something that I am happy to be able to choose to avoid in my life. And eventually our little family may forget how long (and short) this treatment regimen was. But in the meantime, there are those five commutes to endure...
Thursday, September 6, 2007
Adequate level of relief
Today's treatment was almost normal. :) I received all the toxins that were approved, and now am, uhhh, happily? typing up this blog entry to share the good news with my world. Aren't you so happy to be in a virtual world with little old *moi*? Pepe LePew is glad you're here with me!
Details, for all of the curious and detail-devouring people in my virtual and real crowds, include:
(1) Absolute Neutrophil Count (ANC) rocketed up from 1.3 to 1.6... though this is a mixed blessing and is a much smaller gain than I'd hoped for. This key indicator of the health of my immune system needs to remain at 1.5 or higher for treatment to continue, and I imagine that it will drop below 1.5 again next time (Oct. 19, for those of you that are playing along at home). If it drops below 1.5, treatment will again be delayed. However, we discussed this with my clinical trial doctor (Dr. Charles Blanke - very good, but a very busy guy), and he shared that there is are neutrophil-stimulating drugs available (Neupogen and/or Neulasta). Either of these drugs is likely to be able to stimulate enough neutrophil and white blood cell development to allow the treatment schedule to continue at the once-every-two-weeks clip. And hopefully that will mean only a two week cumulative delay before the trial ends in mid-/late November. Only downside - bone pain from making my marrow work overtime to create the additional neutrophils and white blood cells. A mixed blessing, but surely worth the outcome.
(2) In my analytical frenzy after last week's "setback," I closely read the N0147 protocol (that is the guiding document for the clinical trial, and it is supposed to be the "last word" when it comes to dosages, responses to setbacks, etc.) This led to many questions (none of which were really related to the setback, since the standard first response to blood work that does not stack up against the protocol is to delay treatment for one week). So I sent a list of four questions to Dr. Blanke, and included a listing of my side effects. Well, this led to a couple of iterations of answers to my questions (good answers, by the way) as well as some ancillary concern that those side effects had not been adequately documented over the previous six treatments (even though I had shared them, in no small detail, with each oncology nurse before and during each of my infusions). So, Dr. Blanke's clinical nurse and I had a long, comprehensive discussion of said side effects before she could get Dr. Blanke's signature on the orders that tell the pharmacy to brew up my toxin soup. Translation: additional time sitting in the recliner with no chemicals being infused. Made the day longer than "usual," to say the least.
(3) Finally, they adjusted the chemo dosages for the first time since my participation in the clinical trial began. And to be honest, I am not sure that I understand why (a) the original dosages were what they were, (b) why they were changed today and not on every chemo day, since they are based on my body surface area (height in cm times weight in kg times 0.20247) which changes due to weight fluctuations, and (c) what the effect of the decreased 5FU in my pump (4560 mg as opposed to 4800 mg) on my functionality over the next 3-5 days will be. Such an adventure that we are having now! I intend to ask several questions of Dr. Blanke related to this via email soon.
What's it all mean? I need to carefully watch and minimize stress in my life (especially the "little stuff" that adds up throughout the week). I need to rest a lot more than I have been, and minimize potential exposure to colds/infection. I need to find the energy to exercise lightly and consistently, and take more walks in the park. And I need to blog more often to get stuff off my chest... so my lovely wife doesn't need to try to crack jokes in order to lighten me up - let's just say that the stand-up comic industry should not feel threatened. I love that she is trying to distract me, but there has to be a better way! :)
Thanks for reading and encouraging me in all the ways that you do. The comments I received on my last post were amazingly insightful - so thanks for that too! I am glad to be back in the ring with the chemical toxins, and working toward completing this stage of our journey in cancer-world. And I still feel blessed that I am able to make that journey. Peace to you and yours.
Details, for all of the curious and detail-devouring people in my virtual and real crowds, include:
(1) Absolute Neutrophil Count (ANC) rocketed up from 1.3 to 1.6... though this is a mixed blessing and is a much smaller gain than I'd hoped for. This key indicator of the health of my immune system needs to remain at 1.5 or higher for treatment to continue, and I imagine that it will drop below 1.5 again next time (Oct. 19, for those of you that are playing along at home). If it drops below 1.5, treatment will again be delayed. However, we discussed this with my clinical trial doctor (Dr. Charles Blanke - very good, but a very busy guy), and he shared that there is are neutrophil-stimulating drugs available (Neupogen and/or Neulasta). Either of these drugs is likely to be able to stimulate enough neutrophil and white blood cell development to allow the treatment schedule to continue at the once-every-two-weeks clip. And hopefully that will mean only a two week cumulative delay before the trial ends in mid-/late November. Only downside - bone pain from making my marrow work overtime to create the additional neutrophils and white blood cells. A mixed blessing, but surely worth the outcome.
(2) In my analytical frenzy after last week's "setback," I closely read the N0147 protocol (that is the guiding document for the clinical trial, and it is supposed to be the "last word" when it comes to dosages, responses to setbacks, etc.) This led to many questions (none of which were really related to the setback, since the standard first response to blood work that does not stack up against the protocol is to delay treatment for one week). So I sent a list of four questions to Dr. Blanke, and included a listing of my side effects. Well, this led to a couple of iterations of answers to my questions (good answers, by the way) as well as some ancillary concern that those side effects had not been adequately documented over the previous six treatments (even though I had shared them, in no small detail, with each oncology nurse before and during each of my infusions). So, Dr. Blanke's clinical nurse and I had a long, comprehensive discussion of said side effects before she could get Dr. Blanke's signature on the orders that tell the pharmacy to brew up my toxin soup. Translation: additional time sitting in the recliner with no chemicals being infused. Made the day longer than "usual," to say the least.
(3) Finally, they adjusted the chemo dosages for the first time since my participation in the clinical trial began. And to be honest, I am not sure that I understand why (a) the original dosages were what they were, (b) why they were changed today and not on every chemo day, since they are based on my body surface area (height in cm times weight in kg times 0.20247) which changes due to weight fluctuations, and (c) what the effect of the decreased 5FU in my pump (4560 mg as opposed to 4800 mg) on my functionality over the next 3-5 days will be. Such an adventure that we are having now! I intend to ask several questions of Dr. Blanke related to this via email soon.
What's it all mean? I need to carefully watch and minimize stress in my life (especially the "little stuff" that adds up throughout the week). I need to rest a lot more than I have been, and minimize potential exposure to colds/infection. I need to find the energy to exercise lightly and consistently, and take more walks in the park. And I need to blog more often to get stuff off my chest... so my lovely wife doesn't need to try to crack jokes in order to lighten me up - let's just say that the stand-up comic industry should not feel threatened. I love that she is trying to distract me, but there has to be a better way! :)
Thanks for reading and encouraging me in all the ways that you do. The comments I received on my last post were amazingly insightful - so thanks for that too! I am glad to be back in the ring with the chemical toxins, and working toward completing this stage of our journey in cancer-world. And I still feel blessed that I am able to make that journey. Peace to you and yours.
Sunday, September 2, 2007
Setbacks...
OK. Last Friday (8/31) was supposed to be chemo treatment #7. Didn't happen. After a friend gave me a ride up to Portland, and watched me get "accessed" through my PowerPort, by blood test results were not what they needed to be in order to meet the requirements of the clinical trial protocol. The key indicator (ANC - Absolute Neutrophil Count) was 1.3 (1300 neutrophils per milliliter) and it needed to be a 1.5. Very disappointing, to say the least. I was hoping that I would be able to power through this whole chemo-therapy thing (just like I have managed to power through all the other challenges that life has thrown my way over the years). As an aside (for all the detail-oriented bio-geeks out there): my platelet, white blood cell and red blood cell counts were steady; I lost another pound (down to 159.3 lbs); I had significant increases in two measures of my liver enzymes (unexplained now, and we will learn more next week when we try to get #7 again); my blood sugar (glucose) was slightly higher; and there was a small amount of lipids (fat) in my blood sample (also unexplained, and to be reinspected next week).
So, #7 is now rescheduled for Sept 6th (Thursday), and then the two-week regimen restarts. One of the greater pains is rescheduling all the appointments...
This setback hit me pretty hard. One of the reasons that my friend took me to Portland was due to the fact that my close friends from college and I were going to Spamalot. What a treat that was (seeing my friends and then the show)! But I was distracted the entire time by this blood test thing. And even though I know (from a factual perspective) that this is not the end of the world, and that things may in fact be better with an extra week off, I felt like I had failed somehow. I am not a fan of failure, even though I have no conscious control over my bone marrow and its ability to produce neutrophils (which are the precursor cells that support the fighting of infection). And I understand, academically, that the protocol is set up to protect the patient (uhhh... me) over the course of the treatment. I am just so looking forward to this stage being behind me.
So, once again I am compelled to remind you friends, family, and Internet blog surfers - get a colonoscopy! It's so much easier than this chemo. And go see Spamalot... those guys are insanely funny.
So, #7 is now rescheduled for Sept 6th (Thursday), and then the two-week regimen restarts. One of the greater pains is rescheduling all the appointments...
This setback hit me pretty hard. One of the reasons that my friend took me to Portland was due to the fact that my close friends from college and I were going to Spamalot. What a treat that was (seeing my friends and then the show)! But I was distracted the entire time by this blood test thing. And even though I know (from a factual perspective) that this is not the end of the world, and that things may in fact be better with an extra week off, I felt like I had failed somehow. I am not a fan of failure, even though I have no conscious control over my bone marrow and its ability to produce neutrophils (which are the precursor cells that support the fighting of infection). And I understand, academically, that the protocol is set up to protect the patient (uhhh... me) over the course of the treatment. I am just so looking forward to this stage being behind me.
So, once again I am compelled to remind you friends, family, and Internet blog surfers - get a colonoscopy! It's so much easier than this chemo. And go see Spamalot... those guys are insanely funny.
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