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.
Thursday, October 25, 2007
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!
Sunday, October 7, 2007
One week later
It's been a week since the LiveStrong Challenge. And the weather that blasted into the valley that weekend has ushered in the full Fall experience in the Willamette Valley, with brisk winds, leaves quickly shifting colors (from green to brilliant red and orange) before flying off the tree and turning brown, and the sound of the furnace kicking on at 6:55 AM each day. Fall has definitely fallen.
Last year at this time, I was planning for and looking forward to another yearly reunion at the Tree Farm. College buddies of mine have been congregating each year about this time to eat salty peanuts (in the shell), drink small amounts of beer and wine (in comparison with the more copious quantities that we think we remember drinking as mere twenty-somethings), and wander through the trees - contemplating our small individual roles in the universe while celebrating the joys and pains suffered by our little group over the year. Spouses have been invited each time we plan one of these "events", and each time we are declined. I guess they have a hard time imagining the fun in listening to us re-tell Monty Python movies all weekend, while (a) playing with the bulldozer, (b) arguing about who remembered what correctly about that time we did that thing - you know, over by Drumhoeller Fountain on campus, or (c) trudging to the two-holer outhouse in the darkness and rain. I really really look forward to and enjoy these outings/reunions.
This year, becoming known locally as "Ed's Cancer Year", it does not appear likely that the group will be able to make the Tree Farm trip. We had a great time attending Spamalot (see Sept. 2 blog posting), and our intrepid long-distance attendee cannot make too many journeys north each fall (you know who you are!) Maybe we can try in the "spring", but then we end up fighting with the snow... And we are planning to come together at my house, post-Thanksgiving, to watch the Apple Cup football game. This year, it may be the ONLY source of pride for the Huskies and Cougars. But let me say this - I love this group of people and they are yet another source of strength for me as I struggle through the final third of my chemo.
Which, once again, was delayed last Wednesday. ANC was low again, and I have to admit that my frustration is/was higher this time than the last time I was delayed. For these chemo-treatments, I have to get myself mentally and physically prepared. And the last delay means that (optimistically) the last day of treatment is now the day before Thanksgiving. Whoopee, wouldn't you say? Nothing like eating turkey, yams, potatoes, and pumpkin pie while listening to the 5FU pump whirr every 90 seconds or so. The doctor seems to think that we can modify the oxaliplatin dose so that these bloodwork delays might be removed. I hope so. I am tired...
Thanks for reading, and caring, and supporting us through this particular form of hell. I feel like I am a better person for being on this journey, but sometimes I feel a need to complain. Sorry about that part! :)
Last year at this time, I was planning for and looking forward to another yearly reunion at the Tree Farm. College buddies of mine have been congregating each year about this time to eat salty peanuts (in the shell), drink small amounts of beer and wine (in comparison with the more copious quantities that we think we remember drinking as mere twenty-somethings), and wander through the trees - contemplating our small individual roles in the universe while celebrating the joys and pains suffered by our little group over the year. Spouses have been invited each time we plan one of these "events", and each time we are declined. I guess they have a hard time imagining the fun in listening to us re-tell Monty Python movies all weekend, while (a) playing with the bulldozer, (b) arguing about who remembered what correctly about that time we did that thing - you know, over by Drumhoeller Fountain on campus, or (c) trudging to the two-holer outhouse in the darkness and rain. I really really look forward to and enjoy these outings/reunions.
This year, becoming known locally as "Ed's Cancer Year", it does not appear likely that the group will be able to make the Tree Farm trip. We had a great time attending Spamalot (see Sept. 2 blog posting), and our intrepid long-distance attendee cannot make too many journeys north each fall (you know who you are!) Maybe we can try in the "spring", but then we end up fighting with the snow... And we are planning to come together at my house, post-Thanksgiving, to watch the Apple Cup football game. This year, it may be the ONLY source of pride for the Huskies and Cougars. But let me say this - I love this group of people and they are yet another source of strength for me as I struggle through the final third of my chemo.
Which, once again, was delayed last Wednesday. ANC was low again, and I have to admit that my frustration is/was higher this time than the last time I was delayed. For these chemo-treatments, I have to get myself mentally and physically prepared. And the last delay means that (optimistically) the last day of treatment is now the day before Thanksgiving. Whoopee, wouldn't you say? Nothing like eating turkey, yams, potatoes, and pumpkin pie while listening to the 5FU pump whirr every 90 seconds or so. The doctor seems to think that we can modify the oxaliplatin dose so that these bloodwork delays might be removed. I hope so. I am tired...
Thanks for reading, and caring, and supporting us through this particular form of hell. I feel like I am a better person for being on this journey, but sometimes I feel a need to complain. Sorry about that part! :)
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