Finally, we can cross off another one of those elusive chemo-therapy treatments! This morning we drove up to the Center for Health and Well-Being (catchy name, don't you think?) and, with the help of frantically-aligned planets, karma sent toward us from around the globe, and a heavy dose of restorative rest over the past five weeks, I passed my blood test and was infused. The dosage of oxaliplatin was again reduced (now down almost 50% from the amount I received in each of the first 8 treatments), as was the 5-FU (down 25%), and I am again receiving the neupogen (1 injection daily for 5 days starting on Saturday). We are told that this delay-stuff happens routinely in about 1/3 of the cases that Dr. Blanke has seen.
So, now I will be tired again (or, MORE tired than I have been for the past several weeks). But, at most, I have two treatments left. And I'll fill you all in on the scenarios in a later post... but I needed to get the blog-post monkey off my back. Thanks for all the support, and karma.
Peace.
Wednesday, November 14, 2007
Monday, November 5, 2007
Restoratives
I have been told by someone near and dear to my heart that my posts have been somewhat thematically "stuck" for a while now... as in "redundant and whiny." OK. It's hard to be creative and inspired when you are stuck in the middle of an uncomfortable place. Professional writers have a term for this - writer's block. Oh well. Not so much to tell these days that you haven't heard before...
The question is: what to do about it? Try a new topic, then come back to the assignment? Just start writing whatever comes to mind? Do some math homework for a while to get your mind off things? Oops, slipped back into high school English class for a second there. (Didn't work then either.)
The family (and a friend of my daughter) all went to the beach on Sunday. Pacific City and Cape Kiwanda... For many years, the beach has been my "go-to" place when I am working through hard stuff. And this chemo-thing definitely qualifies as one of the hardest things I have ever done. I went to the beach to recover from graduate school and my disappointment with the trials and tribulations of academia. I also went to the beach to recover from the bureaucratic bruising that I received from state government and its ability to crush the energy out of type-A personalities. And now I return (albeit briefly) for a little oceanic restorative treatment during this phase of Ed's cancer world.
I'm not sure what it is, exactly, that the beach does for me. The sounds of waves endlessly marching forward (even in the ebbing of the tide) and seagulls crying, the freshness of the air and its salty tang, the dancing of the sand as the wind blows it into swirls, the froth and splash of water carving sand and rock down to size? To be honest, I wanted to see really BIG waves smashing into headlands - unfortunately, the tide was wrong and we haven't had any good storms to build up the surf. But on this trip I noticed a windblown, gnarled tree growing by itself atop an eroding pile of sand and rock - struggling against the salt air, the absence of sufficient soil, and an overabundance of rain - a survivor. Some of those windblown trees that line the coasts of Oregon and Washington are far older than me, and are barely my height. Truly, an inspiration if ever there was one. And restorative for my soul.
Peace, and warm greetings from the Pacific Northwest.
The question is: what to do about it? Try a new topic, then come back to the assignment? Just start writing whatever comes to mind? Do some math homework for a while to get your mind off things? Oops, slipped back into high school English class for a second there. (Didn't work then either.)
The family (and a friend of my daughter) all went to the beach on Sunday. Pacific City and Cape Kiwanda... For many years, the beach has been my "go-to" place when I am working through hard stuff. And this chemo-thing definitely qualifies as one of the hardest things I have ever done. I went to the beach to recover from graduate school and my disappointment with the trials and tribulations of academia. I also went to the beach to recover from the bureaucratic bruising that I received from state government and its ability to crush the energy out of type-A personalities. And now I return (albeit briefly) for a little oceanic restorative treatment during this phase of Ed's cancer world.
I'm not sure what it is, exactly, that the beach does for me. The sounds of waves endlessly marching forward (even in the ebbing of the tide) and seagulls crying, the freshness of the air and its salty tang, the dancing of the sand as the wind blows it into swirls, the froth and splash of water carving sand and rock down to size? To be honest, I wanted to see really BIG waves smashing into headlands - unfortunately, the tide was wrong and we haven't had any good storms to build up the surf. But on this trip I noticed a windblown, gnarled tree growing by itself atop an eroding pile of sand and rock - struggling against the salt air, the absence of sufficient soil, and an overabundance of rain - a survivor. Some of those windblown trees that line the coasts of Oregon and Washington are far older than me, and are barely my height. Truly, an inspiration if ever there was one. And restorative for my soul.
Peace, and warm greetings from the Pacific Northwest.
Saturday, November 3, 2007
Silence can be deafening
It was another rough week. Well, mostly it was a rough Tuesday and Wednesday, followed by a mostly OK Thursday and then Friday was basically as normal as days can be when you are on "chemo-watch." As many of you know and some of the rest of you have guessed, I did not get treatment #10 this week either. Though the ANC was encouraging enough on Tuesday morning (1.3 by machine count and 1457 by manual count) to have OHSU suggest a re-test on Wednesday morning before we headed up to OHSU, my blood work on Wednesday morning was actually worse than Tuesday (1.2 by machine count). I was both unhappy and very frustrated by this series of events. Gearing up for treatment (physically and mentally) is getting tougher each time, and these delays are very hard for this Type-A individual.
I am so ready for this part of this journey to be over. I struggle with the chemistry part of my preparation for and experience of FOLFOX in that I hate the complex biochemical cycle of anti-emetics, stomach acid control, laxatives, stimulants, and sleeping aids that accompanies the conscious infusion of anti-cancer meds. I hate being tired, and having to rest, and not being able to be the active adult that I have always been. I hate that I am somewhat short-tempered, and that I need to wash my hands so frequently and think carefully about when and where I go places (in order to avoid exposure to cold germs - which seem to congregate where crowds of people go). Like grocery stores, and movie theatres, and, well, most anywhere outside. Result: I have been avoiding this blog.
People began to wonder about its silence. Is it good that he isn't blogging, or did something go wrong? Should I call him, or will that be a bother? I received some really kind support notes - from my Dad, from my Mom, from my neighbor Tom, from Megan (an Internet acquaintance who has been there), and from Angie (a fellow chemo patient at OHSU who just completed her regimen this last month). And I know that there are literally tons of people in my extended support network that think of me from time to time and send uplifting and warm thoughts and energy my way. Thanks. As hard as this week was, I am sure that it would have been completely unbearable without you.
So, the aphorism about "silence being deafening" now has a different meaning for me. Maybe its that the lack of hearing from someone (or absence of a blog post) makes the world we sense just a little deadened - like what happens when you put a pillow over your head. And that's how I felt on Wednesday. I needed to de-sense for a bit, and I retreated from some parts of this cancer life. But I am not giving up. The next month or two will be a roller coaster, I expect, but I have always loved the thrill of real roller coasters. Just ask my brother-in-law and my daughter.
But hey, the Huskies finally managed to play a complete game and beat Stanford, and the Ducks made quite a statement against Arizona State. Do I see Oregon playing Ohio State for the national championship??? Now that would make most Oregonians roar with pride - far louder than a pillow could contain, don't you think?
I am so ready for this part of this journey to be over. I struggle with the chemistry part of my preparation for and experience of FOLFOX in that I hate the complex biochemical cycle of anti-emetics, stomach acid control, laxatives, stimulants, and sleeping aids that accompanies the conscious infusion of anti-cancer meds. I hate being tired, and having to rest, and not being able to be the active adult that I have always been. I hate that I am somewhat short-tempered, and that I need to wash my hands so frequently and think carefully about when and where I go places (in order to avoid exposure to cold germs - which seem to congregate where crowds of people go). Like grocery stores, and movie theatres, and, well, most anywhere outside. Result: I have been avoiding this blog.
People began to wonder about its silence. Is it good that he isn't blogging, or did something go wrong? Should I call him, or will that be a bother? I received some really kind support notes - from my Dad, from my Mom, from my neighbor Tom, from Megan (an Internet acquaintance who has been there), and from Angie (a fellow chemo patient at OHSU who just completed her regimen this last month). And I know that there are literally tons of people in my extended support network that think of me from time to time and send uplifting and warm thoughts and energy my way. Thanks. As hard as this week was, I am sure that it would have been completely unbearable without you.
So, the aphorism about "silence being deafening" now has a different meaning for me. Maybe its that the lack of hearing from someone (or absence of a blog post) makes the world we sense just a little deadened - like what happens when you put a pillow over your head. And that's how I felt on Wednesday. I needed to de-sense for a bit, and I retreated from some parts of this cancer life. But I am not giving up. The next month or two will be a roller coaster, I expect, but I have always loved the thrill of real roller coasters. Just ask my brother-in-law and my daughter.
But hey, the Huskies finally managed to play a complete game and beat Stanford, and the Ducks made quite a statement against Arizona State. Do I see Oregon playing Ohio State for the national championship??? Now that would make most Oregonians roar with pride - far louder than a pillow could contain, don't you think?
Thursday, October 25, 2007
The next setback
OK. Treatment #10 has not yet happened. My blood work (specifically, my Absolute Neutrophil Count - ANC) was not up to snuff by a long shot. To wit, I need an ANC of 1.5 to be infused with the toxic soup and mine was 0.7 this time. I was frustrated enough to demand that they draw another blood sample and rerun the analysis. The second sample came back 0.6... In no way was I getting my tenth infusion of FOLFOX this week. Very big bummer. And I decided that a third sample would put me into the "scary vulnerable" category related to susceptibility to colds and infection.
But the very worst part of my frustration this time was the absence of any explanation and/or advice about what to do next. Beyond "see you next week," I felt like we were hurried out the door. My doctor was in a meeting and told the nurse coordinator that I should not receive additional neupogen, because it apparently wasn't working. We just rescheduled ourselves to be at the clinic on every Wednesday for the foreseeable future, not knowing if my ANC will even recover to 1.5 after this additional week of rest. And then waited for some information...
...Which I eventually received today via a phone call. Next week I will have my blood work done in town the day before we are scheduled to travel to OHSU for infusion #10, and if the key components (ANC, white blood cells, and platelets) are not above the protocol's minimum values we will not have to spend half a day driving to and from Portland. This is a better arrangement than the previous schedule. And I am to avoid germs as much as I can by staying away from crowded places where my chances of catching a cold (or other infection) are highest. Like, ummmm, churches, bars, and grocery stores. And I am supposed to become more fanatical about clean hands. The clinical study protocol allows up to six weeks between treatments, so I can still be in the study. But that may have me on this toxic soup delivery schedule well into the new year. Yippee-skippy, don't ya know.
I still have some questions, though, that I intend to email to my doctor. Like, at what point do we hear my body saying, "Enough already!" and then decide to stop the poison? And, is there anything that I should be doing (or not doing) that will help my bone marrow/blood recover? And what the heck happened to the Colorado Rockies in Game One of the World Series??!?
Yup, the world keeps spinning, in spite of frustrating days, unexpected news, uncomfortable silences, and unbelievable pitching.
Thanks for reading my blog, and caring.
But the very worst part of my frustration this time was the absence of any explanation and/or advice about what to do next. Beyond "see you next week," I felt like we were hurried out the door. My doctor was in a meeting and told the nurse coordinator that I should not receive additional neupogen, because it apparently wasn't working. We just rescheduled ourselves to be at the clinic on every Wednesday for the foreseeable future, not knowing if my ANC will even recover to 1.5 after this additional week of rest. And then waited for some information...
...Which I eventually received today via a phone call. Next week I will have my blood work done in town the day before we are scheduled to travel to OHSU for infusion #10, and if the key components (ANC, white blood cells, and platelets) are not above the protocol's minimum values we will not have to spend half a day driving to and from Portland. This is a better arrangement than the previous schedule. And I am to avoid germs as much as I can by staying away from crowded places where my chances of catching a cold (or other infection) are highest. Like, ummmm, churches, bars, and grocery stores. And I am supposed to become more fanatical about clean hands. The clinical study protocol allows up to six weeks between treatments, so I can still be in the study. But that may have me on this toxic soup delivery schedule well into the new year. Yippee-skippy, don't ya know.
I still have some questions, though, that I intend to email to my doctor. Like, at what point do we hear my body saying, "Enough already!" and then decide to stop the poison? And, is there anything that I should be doing (or not doing) that will help my bone marrow/blood recover? And what the heck happened to the Colorado Rockies in Game One of the World Series??!?
Yup, the world keeps spinning, in spite of frustrating days, unexpected news, uncomfortable silences, and unbelievable pitching.
Thanks for reading my blog, and caring.
Sunday, October 21, 2007
MISTER crankypants
Well, here we are. The Sunday of the week of (hopefully) treatment numero diez, barring the news that my blood cannot handle the chemo at this time. But we are ever-positive that the decreased dosage of oxaliplatin in combination with the neupogen injections will work together to support the next round of intentional toxicity. I am both looking forward to and dreading Wednesday morning at 10am...
But that is just my mental state as of the bottom of the sixth inning of the seventh game of the ALCS, with the score 3-2 in favor of Boston over Cleveland. As those closest to me will be quick to say, I am a little difficult to handle these days. And it's more of a "tone of voice" thing than anything else, or so I'm told. I can't say that they are wrong (mostly because I am not intentionally using that yucky tone of voice), but it makes me sad to think that that is what I sound like. What to do?
I think it's fatigue. And I know that the fatigue and tiredness will be getting a bit worse over the last three treatments. And that those last three treatments will - fingers crossed - be done by Thanksgiving. But it bothers me that I cannot seem to get a handle on that whole tone-of-voice thing. And that I do it unconsciously. And that it is dealt most often to the wife and daughter.
So we try to make a little joke out of it, and we all refer to Mr. Crankypants when this attitude and tone pop up. Sometimes, though, it's too late, and the crestfallen look of a child reminds me that life is good (and too short to bring such sadness to anyone, much less my loving daughter). Part of the problem, today, was work-related stress... and that is not fair to anyone. Part of the problem, too, was trying to do too much physical work in my weakened condition. But I am not a fan of excuses, even when I know I currently have one of the best for just about every foible and shortcoming. So, Internet denizens, I am declaring a moratorium on cranky responses to questions and observations. And I will do my best to relax and listen.
Happy birthday, Al. It was fun at dinner tonight, even through the drama of Japanese food and silly hats. And the girl-chemistry interference run by the other parents present, I say "gracias, mis amigos".
Bye-bye for now. And have a great week.
But that is just my mental state as of the bottom of the sixth inning of the seventh game of the ALCS, with the score 3-2 in favor of Boston over Cleveland. As those closest to me will be quick to say, I am a little difficult to handle these days. And it's more of a "tone of voice" thing than anything else, or so I'm told. I can't say that they are wrong (mostly because I am not intentionally using that yucky tone of voice), but it makes me sad to think that that is what I sound like. What to do?
I think it's fatigue. And I know that the fatigue and tiredness will be getting a bit worse over the last three treatments. And that those last three treatments will - fingers crossed - be done by Thanksgiving. But it bothers me that I cannot seem to get a handle on that whole tone-of-voice thing. And that I do it unconsciously. And that it is dealt most often to the wife and daughter.
So we try to make a little joke out of it, and we all refer to Mr. Crankypants when this attitude and tone pop up. Sometimes, though, it's too late, and the crestfallen look of a child reminds me that life is good (and too short to bring such sadness to anyone, much less my loving daughter). Part of the problem, today, was work-related stress... and that is not fair to anyone. Part of the problem, too, was trying to do too much physical work in my weakened condition. But I am not a fan of excuses, even when I know I currently have one of the best for just about every foible and shortcoming. So, Internet denizens, I am declaring a moratorium on cranky responses to questions and observations. And I will do my best to relax and listen.
Happy birthday, Al. It was fun at dinner tonight, even through the drama of Japanese food and silly hats. And the girl-chemistry interference run by the other parents present, I say "gracias, mis amigos".
Bye-bye for now. And have a great week.
Saturday, October 13, 2007
Ramblin' Man
It's autumn in the Willamette Valley. The trees are changing their clothes, preparing for the chilly winds of winter. The dogs that walk their companions through the park are wearing their coats a little more tightly these days (no kidding, I just saw two greyhounds walk by with those little racing blankies tied to their necks). And my cold sensitivity has put me in constant touch with the neurons in the soles of my feet, fingertips, and nose in ways that cannot be adequately described in words. Let's just say that I am in a state of constant awareness when it comes to those areas of my body, and leave it at that, OK? :)
But, today only, there is actual good news from the peripheral neuropathy department... little or no additional skin tingling on my upper right abdomen! This decrease is likely due to the lower dosage of oxaliplatin that was infused on last Tuesday - in response to my concern about the "spread" of skin tingling being indicative of the beginning of a chronic condition (and we do *not* want anything like that).
And what else... thanks so much for the quick, supportive comments on the blog! It seems like forever that this odd-venture has been going on, and I appreciate the continuous sense of hugs and care that buoys me up each time I check-in at blog central. I just spoke to my Mom, and she reminded me that this blog sometimes gets printed out and mailed around for those folks that are still more attached to the non-electronic forms of communication. I can only say, in partial defense, that if I even TRIED to hand-write notes to all of you, I would feel a miserable failure due to the volume of email and cards I get. And for all of that potential misery, you have my eternal thanks.
These days right after chemo are the slowly plodding left-right, left-right days in this treatment regimen... then things start to pick up until just before the next treatment... as does the dread that accompanies the anticipated resumption of the plodding. What can I say? I want to jog around the park, or at least walk it once or twice. I want to start getting my legs in shape for skiing. I want to eat bloody red meat (and taste it too), and wash it down with a decent glass of hearty red wine. Then there's the dessert... I want to wrestle (gently, of course) with my daughter, and not worry about clonking that silly (but essential) port-a-cath. I want to be able to plan a weekend without worrying about where it lands in relation to the bi-weekly chemo-hell...
OK. Now we know that Ed can complain as well as wax philosophical. I DO see a light at the end of this tunnel, and I know it's not a train wreck waiting to happen. So where does that leave this blog post? Rambling around, no beginning, no end? Maybe that's it... no beginning, no end.
Peace to you and yours, and for our tiny blue ball as well.
But, today only, there is actual good news from the peripheral neuropathy department... little or no additional skin tingling on my upper right abdomen! This decrease is likely due to the lower dosage of oxaliplatin that was infused on last Tuesday - in response to my concern about the "spread" of skin tingling being indicative of the beginning of a chronic condition (and we do *not* want anything like that).
And what else... thanks so much for the quick, supportive comments on the blog! It seems like forever that this odd-venture has been going on, and I appreciate the continuous sense of hugs and care that buoys me up each time I check-in at blog central. I just spoke to my Mom, and she reminded me that this blog sometimes gets printed out and mailed around for those folks that are still more attached to the non-electronic forms of communication. I can only say, in partial defense, that if I even TRIED to hand-write notes to all of you, I would feel a miserable failure due to the volume of email and cards I get. And for all of that potential misery, you have my eternal thanks.
These days right after chemo are the slowly plodding left-right, left-right days in this treatment regimen... then things start to pick up until just before the next treatment... as does the dread that accompanies the anticipated resumption of the plodding. What can I say? I want to jog around the park, or at least walk it once or twice. I want to start getting my legs in shape for skiing. I want to eat bloody red meat (and taste it too), and wash it down with a decent glass of hearty red wine. Then there's the dessert... I want to wrestle (gently, of course) with my daughter, and not worry about clonking that silly (but essential) port-a-cath. I want to be able to plan a weekend without worrying about where it lands in relation to the bi-weekly chemo-hell...
OK. Now we know that Ed can complain as well as wax philosophical. I DO see a light at the end of this tunnel, and I know it's not a train wreck waiting to happen. So where does that leave this blog post? Rambling around, no beginning, no end? Maybe that's it... no beginning, no end.
Peace to you and yours, and for our tiny blue ball as well.
Tuesday, October 9, 2007
75% and running downhill
My blood work was good today - appropriately up or down on every important component. It's amazing what an extra six days will do for anyone on the receiving end of the toxic drip line. Additionally, the dose of oxaliplatin was reduced to 125 mg (from 176 mg) in an attempt to minimize the peripheral neuropathies. Yeah for that too! Of course, the treatment regimen consumed most of the day (left home at 8am, returned home at 5:15pm). And finally, I will begin to receive neupogen shots (once daily for five days beginning 24 hours after the 5FU pump is disconnected and my PowerPort is deaccessed. Neupogen kick-starts my bone marrow into overproducing neutrophils and white blood cells - and this will hopefully prevent any more treatment delays. If true, I should receive #12 of 12 treatments on November 21... which will make Thanksgiving VERY meaningful this year.
So where does that leave us? 75 percent done. Next one is 83-1/3 percent done, then 91-2/3 percent done, then 100%. No philosophical energy tonight, but thanks for all the spiritual and psychological energy you all sent toward me today. It most certainly helped!
So where does that leave us? 75 percent done. Next one is 83-1/3 percent done, then 91-2/3 percent done, then 100%. No philosophical energy tonight, but thanks for all the spiritual and psychological energy you all sent toward me today. It most certainly helped!
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