For those of you that have not had the opportunity to undergo a CT scan, it is not the most unpleasant diagnostic examination that you can experience. CT is the abbreviation for "Computed axial Tomography," which is sometimes referred to as "CAT," and it is basically an x-ray machine that spins around your body continuously recording digital data about your insides. It takes about five minutes, once you have ingested two quarts' worth of barium sulfate milkshakes over an hour (I chose the vanilla over the berry flavor) and are injected with an additional IV contrast agent (iodine-based, clear solution) during the scan itself. My PowerPort was accessed for this IV, making the whole process pretty straightforward. The oral contrast (barium sulfate) makes it easier to identify the stomach and intestines, and the IV contrast (iodine) makes it easier to "see" my blood vessels and heart. Both contrast agents are eliminated by my liver and kidneys. By the way, the IV contrast agent makes you feel warm inside (one CT technician warned me that it might make me feel like I'd wet my pants - but my experience was more of a warm, metallic tongue first and then a very slightly sweaty sensation spreading down my body and then up into my head). Then the table that I was laying on slides into a circular tunnel (not claustrophobic at all), the scanner starts to slowly spin around me, and a feminine machine voice says, "Breathe in and hold your breath." The table slowly slides out of the machine, and the voice says, "Breathe." It's good to be reminded to breathe every so often. And now we're all done.
Except for the waiting.
Since I am meeting with my oncologist on Wednesday next week and need to take the imagery/results with me, I asked the CT technician when the scan results would be available. He said that I could pick up the digital imagery immediately (since it is digital and all!), but that the radiologist would not look at the images until later that day. So I picked up the imagery and final report the next afternoon, and here is what it says [comments in square brackets are mine]:
HISTORY: Followup colon cancer in a 46-year-old male. He was initially diagnosed in March 2007. He underwent surgical resection in June 2007 [actually, the surgery was in April 2007, and chemo began in June]. Since that time, he has been treated with chemotherapy.
PROCEDURE: Following administration of oral and IV contrast, axial 5mm images were obtained from the lung apices [plural of apex - the top of the lungs] through the symphysis pubis [just below the bladder, basically].
FINDINGS: The lungs remain clear. No developing mass or nodule seen in either lung. No local infiltrate is present bilaterally [I believe that this is a redundant sentence, given the one immediately preceding it, but it might mean that the radiologist did not see any symmetrical "features" that should not be there]. No pleural effusion [excess fluid in the space around the lungs] is present bilaterally and no pericardial effusion [fluid around the heart] is seen. No areas of pleural thickening [increase in the width of the pleura - the lining of the sac that surrounds the lungs] are identified. No developing adenopathy [large/swollen lymph nodes] is seen within the chest. Heart size is normal [whew!].
The liver is normal in size. Numerous small low density nodules are again seen throughout the liver, which measure up to a maximum of about 11mm. All of these nodules were seen on the prior study from 5/22/2007 and appear stable in size and number. No enlarging or new mass is seen within the liver. The gallbladder, bile ducts, and pancreas appear normal. The spleen is normal in size. A tiny low density nodule [this usually means "fluid-filled" and is not cancerous] is seen on image 51, measuring about 6mm. This was present on the study from 5/22/2007 and has diminished in size. Adrenal glands and kidneys appear normal.
Postsurgical changes are present within the pelvis. A suture line is noted at the rectosigmoid junction [where the rectum connects with the large intestine] compatible with partial colonic resection [the surgery I had]. The remaining colon appears unremarkable [my new favorite diagnostic word!]. No areas of bowel wall thickening are seen. Small bowel appears unremarkable. No dilated bowel loops are present. No developing adenopathy is seen within the abdomen or pelvis. No ascites [accumulation of fluid in the peritoneal cavity - basically the area below your lungs and above your crotch] is present. Bladder appears unremarkable.
IMPRESSION:
1. No evidence for developing metastatic disease or recurrent neoplastic disease within the chest, abdomen, and pelvis.
2. Clear lungs.
3. Stable appearance and number of multiple small low density nodules in the liver. A prior ultrasound was performed on 3/29/2007, showing these to represent cysts. No new or enlarging mass is seen within the liver.
4. No developing adenopathy is seen within the chest, abdomen, and pelvis.
5. Postsurgical changes related to partial distal [toward the end] colon resection. Area of anastomosis [the site of the surgical reconnection of the two parts of my colon] appears unremarkable, without developing wall thickening. No adenopathy is seen within this region.
6. No ascites is present.
7. Tiny nonspecific low density nodule is seen at the anterior margin of the spleen, diminished in size when compared with the study on 5/22/2007.
So, with the caveat that I have not spoken to my oncologist yet, I think this CT scan result bespeaks quite good news. Thanks for your interest and attention, and you will now be returned to your regularly scheduled programming....
Saturday, December 29, 2007
Wednesday, December 26, 2007
Respite
Hello. Remember me? I've been "off-blog" for nearly a month now, and have been feeling more and more guilty about that. So, where have I been, you ask? Well, I have been wallowing in the distraction of not having any more chemo-therapy to endure. I have been swimming in the warm waters of a slowly healing body, experiencing the flavors of beer, wine, scotch, and ethnic foods as often as possible. In short, I have been trying to reclaim some semblance of normalcy at the end of Ed's cancer-year.
My fingertips tingle a bit all the time, but especially when I exert any pressure with them (like typing) - and I have a lot of trouble with the collar buttons on my work shirts each morning. I mistrust my fine finger coordination, and have found that I drop things more often than I think I should. My feet tingle constantly too - and this is especially difficult at night (when I think that my feet are extremely cold but they are just, ummmm, tingling).
I would say, though, that getting *away* from cancer-world is virtually impossible. My family and I went on a very relaxing cruise in the Eastern Caribbean. We enjoyed warm weather, calm seas, wonderful meals and no responsibilities for seven straight days. We enjoyed each other's company as well as the companionship of several hundred strangers, and were treated royally by the staff and crew of the Celebrity Millennium. We frolicked on tropical beaches, we enjoyed the massages, the tropical fishes, and the shopping in far-off ports. In short, we had a lot of fun. But I couldn't seem to shake the nagging feeling that my world is still shifted from the *way it was*. My port is still bulging out of my upper-right chest, and I know I have a CT scan tomorrow and an appointment with my oncologist next Wednesday.
Respite - a break from the way things are - is essential. "Vacation" is an Americanism that I have never found to encourage relaxation. I tend to try to force too much *stuff* into too little time, and end up stressing out about the content of that time. This cruise ended up being a great respite for me, but only after a couple days' worth of stress about spending money and over-planning daily activities. I am so glad that we went, and glad for the companionship of my wife, my daughter, and my brother-in-law... and for the anonymity of cruising with strangers. Sometimes getting away from "it all" is impossible, but we managed to get away from most of it. And for this I am most grateful!
My fingertips tingle a bit all the time, but especially when I exert any pressure with them (like typing) - and I have a lot of trouble with the collar buttons on my work shirts each morning. I mistrust my fine finger coordination, and have found that I drop things more often than I think I should. My feet tingle constantly too - and this is especially difficult at night (when I think that my feet are extremely cold but they are just, ummmm, tingling).
I would say, though, that getting *away* from cancer-world is virtually impossible. My family and I went on a very relaxing cruise in the Eastern Caribbean. We enjoyed warm weather, calm seas, wonderful meals and no responsibilities for seven straight days. We enjoyed each other's company as well as the companionship of several hundred strangers, and were treated royally by the staff and crew of the Celebrity Millennium. We frolicked on tropical beaches, we enjoyed the massages, the tropical fishes, and the shopping in far-off ports. In short, we had a lot of fun. But I couldn't seem to shake the nagging feeling that my world is still shifted from the *way it was*. My port is still bulging out of my upper-right chest, and I know I have a CT scan tomorrow and an appointment with my oncologist next Wednesday.
Respite - a break from the way things are - is essential. "Vacation" is an Americanism that I have never found to encourage relaxation. I tend to try to force too much *stuff* into too little time, and end up stressing out about the content of that time. This cruise ended up being a great respite for me, but only after a couple days' worth of stress about spending money and over-planning daily activities. I am so glad that we went, and glad for the companionship of my wife, my daughter, and my brother-in-law... and for the anonymity of cruising with strangers. Sometimes getting away from "it all" is impossible, but we managed to get away from most of it. And for this I am most grateful!
Sunday, December 2, 2007
Toxic clouds with silver linings
OK. I was scheduled to get my 11th (and last) treatment last Thursday. At the previous monthly appointment with my doctor, we had talked about the endgame for my chemo-therapy, and had agreed that the "final" (12th) treatment could be avoided. (Given that my family has had a special vacation planned for December to celebrate the end of chemo, I had decided that I did not want to spend any vacation time feeling chemo-crummy.) So, #11 on November 29 would be the last one... if my blood work was OK. On the 28th I had a blood test to see if the trip to Portland was even needed (this after a reduced dosage of both oxaliplatin and fluorouracil during treatment #10 AND five injections of neupogen to encourage the growth of white cells and neutrophils). The results were mixed (WBC was too low - 2.7 when I need at least 3.0 - while the ANC was a protocol-minimum 1.5), so we decided that it was worth the trip on the 29th.
No go. The blood work up at the clinic in Portland was significantly different from the previous day's test results. WBC was a 2.1 and ANC was 1.3, both far too low to withstand the impact of chemo-therapy. No treatment #11 (unless I want to, ummm, come back a week later for another roll of the bloodwork dice). No thank you, really. I did not get treatment #11, and #12 is off the calendar completely. I need to enjoy this vacation, and I want my family to be able to enjoy it even more. Being tired, and cranky-stinky - well, that doesn't sound like a fun guy to be (or be with) on a vacation. So, the chemo-therapy part of this colon cancer thing is over! But, what about the implications for my "cure" probability?
I am not qualified in any medical sense to speak authoritatively on that question. But, ten solid treatments are under my proverbial belt, though there have been three increasingly difficult delays. Peripheral neuropathy on the rise, even with decreasing dosages. I trust that my body has been hammered pretty hard by this treatment regimen, and that it is telling me that it has had enough. And everyone is different - on so many levels - that the prescribed length and dosage of treatment must be a variable that is flexible. The toxicity of the chemicals used to treat cancer is intentional, in order to wipe out those hypothetically "fast-growing" cancer cells. My body has been surprisingly strong in dealing with the bi-weekly introduction of liquid poison. My fingertips and feet tingle all the time, and I am very sensitive to cold and heat. My insides are producing gases that should not EVER be released in an enclosed space. And the high fatigue right after treatment had extended from 4 days to about 6 days... and now all of that is only going to improve!
Every day is a day closer to a new normalcy, without the added mental weight of anticipating negative blood counts or the infusion of toxic chemistry. I can work on strength recovery, and look forward to daily walks to work. And the vacation is just around the corner.
Now that's a silver lining.
(PS - the next step is a CT scan on December 27th to check the status of my insides (basically looking for anything unusual) followed by a post-chemo appointment with my oncologist in early January and a colonoscopy later in the spring.)
No go. The blood work up at the clinic in Portland was significantly different from the previous day's test results. WBC was a 2.1 and ANC was 1.3, both far too low to withstand the impact of chemo-therapy. No treatment #11 (unless I want to, ummm, come back a week later for another roll of the bloodwork dice). No thank you, really. I did not get treatment #11, and #12 is off the calendar completely. I need to enjoy this vacation, and I want my family to be able to enjoy it even more. Being tired, and cranky-stinky - well, that doesn't sound like a fun guy to be (or be with) on a vacation. So, the chemo-therapy part of this colon cancer thing is over! But, what about the implications for my "cure" probability?
I am not qualified in any medical sense to speak authoritatively on that question. But, ten solid treatments are under my proverbial belt, though there have been three increasingly difficult delays. Peripheral neuropathy on the rise, even with decreasing dosages. I trust that my body has been hammered pretty hard by this treatment regimen, and that it is telling me that it has had enough. And everyone is different - on so many levels - that the prescribed length and dosage of treatment must be a variable that is flexible. The toxicity of the chemicals used to treat cancer is intentional, in order to wipe out those hypothetically "fast-growing" cancer cells. My body has been surprisingly strong in dealing with the bi-weekly introduction of liquid poison. My fingertips and feet tingle all the time, and I am very sensitive to cold and heat. My insides are producing gases that should not EVER be released in an enclosed space. And the high fatigue right after treatment had extended from 4 days to about 6 days... and now all of that is only going to improve!
Every day is a day closer to a new normalcy, without the added mental weight of anticipating negative blood counts or the infusion of toxic chemistry. I can work on strength recovery, and look forward to daily walks to work. And the vacation is just around the corner.
Now that's a silver lining.
(PS - the next step is a CT scan on December 27th to check the status of my insides (basically looking for anything unusual) followed by a post-chemo appointment with my oncologist in early January and a colonoscopy later in the spring.)
Sunday, November 25, 2007
Ignorance and bliss...
I have not felt the need to "publicly" respond to any of the comments that I receive related to my posts has been necessary before. My general sense is that most comments are of the "keep your chin up" or "thanks for sharing" variety. And while I certainly appreciate the support that those type of comments provide, they have not caused me to want to post a response. However, three versions of one question were posted the other day related to one of my blog entries, and I feel somewhat compelled to pontificate...
"Do you feel your experience with cancer has been more difficult as an intellectually sound individual? Has the pro-active spirit made the journey mentally taxing as well as physically? I guess what I'm trying to say is do you sometimes feel others are fortunate with an ignorance is bliss attitude?"
First, I appreciate being called an "intellectually sound individual." Some days I am not so sure that's the case. :) But the question is still out there, and my experience with cancer is what this blog is all about. Yes, the journey HAS been damned difficult... and not only for me. Chemo-therapy and the odd mixture of side effect management drugs is very distracting on so many levels - but I have already blogged (ad nauseum - pun intended) about those issues. I regularly see the world through a different lens than I ever could have imagined using prior to becoming a member of the cancer club. But the idea of "more difficult" than some other person's journey troubles me. I am not sure that any one else's cancer journey is qualitatively comparable to mine, and I have a hard time imagining my new life journey (one, perhaps, dulled by drugs?) that is so different from the one that I am living. Every cancer treatment regimen is ultimately an experiment of one... an experiment that is statistically informed by the individual treatment "experiments" that preceded it. I am lucky to have been diagnosed now (as opposed to a decade ago), and to be otherwise healthy enough to handle the chemo-therapy. I'm not sure if that is a good answer to the gist of the question, but there it is.
So, let's consider the second approach to the question - about mental taxation and a pro-active spirit. (Again, my thanks to the comment-poster for the complimentary manner in which this question is raised.) I, "Mr. He-Who-Must-Analyze-Everything", cannot imagine being less active than I have been. But yes, that does add to the mental anguish I feel about the way that my experience of the world has changed. And by extension I am sure that the energy I devote to thinking about, researching, analyzing, questioning, and re-analyzing the details of my diagnosis and treatments is not available to my physical self. This begs another question/observation though: would I have it any other way (or perhaps more accurately, can I imagine myself not doing these things)? Not really. I am what I am (apologies to Popeye), and that means constantly re-examining what I know and what that means about my world. So, yes it is more taxing to be self-aware and proactive about my life as a cancer survivor than my life before the diagnosis - but only because I have a new reality to understand and embrace.
I am unsure how I should approach the last approach. "Ignorance is bliss" is one of those aphorisms that I only partially understand. I can accept that there are only so many issues or processes or whatever that one human mind can hold and consciously act upon. Can I really affect the abject poverty of sub-Saharan Africa - caused by centuries of tribal and colonial machinations layered atop environmental changes that transcend locale? What about the plight of homeless persons, with the multiple facets of modern existence that confound their ability to successfully interact with their own cultures? I am (selectively?) ignorant about the details of these situations as I work to handle the complications of a cancer in my life - and might consider that ignorance to be a kind of bliss. But applying that attitude to how one deals with a cancer diagnosis (or any other significant, life-threatening event) doesn't work so well for me. I cannot detach the analytical, proactive aspects of my "self" so as to be able to imagine how it might feel (better or worse) without those characteristics. And it is hard to imagine "not knowing" about a cancer (or the details of the diagnosis, prognosis, treatment, and recovery) as being somehow better than knowing... but that can only apply to me.
Cancer sucks. Period. There is really no blissful ignorance to wallow in once the "c" word enters your life. My friends and family have tolerated my somewhat compulsive, detail-oriented approach to colon cancer, and have encouraged me to find whatever way forward I need. I have been a cranky dude at times, and that has made it difficult for my nearest and dearest support group. On many occasions I have felt the need to apologize for unfortunate utterances (due to fatigue, or chemo-brain, or just plain tiredness). But soon, the transfusions will be finished and I will be moving back toward a "normal" life - whatever the hell that means.
So, the summary answer? Cancer is hard on everyone it touches, however directly or indirectly. Being proactive or hyper-analytical does not change that statement overmuch. We all struggle to decide how much we need to know about some aspect of our lives, and we make decisions based on the amount of information we feel is "enough." I am sure that there is a spectrum of "responses" to this line of questioning, and it's certainly possible that I am a statistical outlier. (I know some people that would argue that that "possibility" is close to 100% likely!) I feel lucky to be who and what I am, and to know that I can rely on a strong, supportive community for support. And that's what matters.
"Do you feel your experience with cancer has been more difficult as an intellectually sound individual? Has the pro-active spirit made the journey mentally taxing as well as physically? I guess what I'm trying to say is do you sometimes feel others are fortunate with an ignorance is bliss attitude?"
First, I appreciate being called an "intellectually sound individual." Some days I am not so sure that's the case. :) But the question is still out there, and my experience with cancer is what this blog is all about. Yes, the journey HAS been damned difficult... and not only for me. Chemo-therapy and the odd mixture of side effect management drugs is very distracting on so many levels - but I have already blogged (ad nauseum - pun intended) about those issues. I regularly see the world through a different lens than I ever could have imagined using prior to becoming a member of the cancer club. But the idea of "more difficult" than some other person's journey troubles me. I am not sure that any one else's cancer journey is qualitatively comparable to mine, and I have a hard time imagining my new life journey (one, perhaps, dulled by drugs?) that is so different from the one that I am living. Every cancer treatment regimen is ultimately an experiment of one... an experiment that is statistically informed by the individual treatment "experiments" that preceded it. I am lucky to have been diagnosed now (as opposed to a decade ago), and to be otherwise healthy enough to handle the chemo-therapy. I'm not sure if that is a good answer to the gist of the question, but there it is.
So, let's consider the second approach to the question - about mental taxation and a pro-active spirit. (Again, my thanks to the comment-poster for the complimentary manner in which this question is raised.) I, "Mr. He-Who-Must-Analyze-Everything", cannot imagine being less active than I have been. But yes, that does add to the mental anguish I feel about the way that my experience of the world has changed. And by extension I am sure that the energy I devote to thinking about, researching, analyzing, questioning, and re-analyzing the details of my diagnosis and treatments is not available to my physical self. This begs another question/observation though: would I have it any other way (or perhaps more accurately, can I imagine myself not doing these things)? Not really. I am what I am (apologies to Popeye), and that means constantly re-examining what I know and what that means about my world. So, yes it is more taxing to be self-aware and proactive about my life as a cancer survivor than my life before the diagnosis - but only because I have a new reality to understand and embrace.
I am unsure how I should approach the last approach. "Ignorance is bliss" is one of those aphorisms that I only partially understand. I can accept that there are only so many issues or processes or whatever that one human mind can hold and consciously act upon. Can I really affect the abject poverty of sub-Saharan Africa - caused by centuries of tribal and colonial machinations layered atop environmental changes that transcend locale? What about the plight of homeless persons, with the multiple facets of modern existence that confound their ability to successfully interact with their own cultures? I am (selectively?) ignorant about the details of these situations as I work to handle the complications of a cancer in my life - and might consider that ignorance to be a kind of bliss. But applying that attitude to how one deals with a cancer diagnosis (or any other significant, life-threatening event) doesn't work so well for me. I cannot detach the analytical, proactive aspects of my "self" so as to be able to imagine how it might feel (better or worse) without those characteristics. And it is hard to imagine "not knowing" about a cancer (or the details of the diagnosis, prognosis, treatment, and recovery) as being somehow better than knowing... but that can only apply to me.
Cancer sucks. Period. There is really no blissful ignorance to wallow in once the "c" word enters your life. My friends and family have tolerated my somewhat compulsive, detail-oriented approach to colon cancer, and have encouraged me to find whatever way forward I need. I have been a cranky dude at times, and that has made it difficult for my nearest and dearest support group. On many occasions I have felt the need to apologize for unfortunate utterances (due to fatigue, or chemo-brain, or just plain tiredness). But soon, the transfusions will be finished and I will be moving back toward a "normal" life - whatever the hell that means.
So, the summary answer? Cancer is hard on everyone it touches, however directly or indirectly. Being proactive or hyper-analytical does not change that statement overmuch. We all struggle to decide how much we need to know about some aspect of our lives, and we make decisions based on the amount of information we feel is "enough." I am sure that there is a spectrum of "responses" to this line of questioning, and it's certainly possible that I am a statistical outlier. (I know some people that would argue that that "possibility" is close to 100% likely!) I feel lucky to be who and what I am, and to know that I can rely on a strong, supportive community for support. And that's what matters.
Thursday, November 22, 2007
Plumbing
Sitting here on Thanksgiving morning, in the relative quiet before the annual storm of friendship descends upon our kitchen and dining room, I wonder how often we really think about the infrastructure of our lives. My day-to-day routine just seems to happen, you know? Some alarm goes off (mine is internal and seems to be pegged on 6am local time - wherever that happens to be), and I begin the day. Most days, this involves some level of external light (sun rising over wisps of fog in the park, a hint of grey light in the eastern sky, or even a blast of golden energy into our second story bedroom) and sound (the steady thrumming of raindrops that are moving through the gutter system outside the window, wind flap-flap-flapping the sign that announces yet another years' holiday sale at the art museum across the street, the Amtrak commuter line to Portland announcing that yes, again, it is heading up the tracks, or even the background street noise from earlier-risers on Liberty and Mission Streets making their way to someplace else). Today is quiet and dark.
I go downstairs to perform ablutions - shaving with an electric razor (to avoid those nasty and potentially infected nicks and cuts), counting the remaining hairs on the top of my head, showering off all of the sleepiness and such. I turn the faucet handle at the sink to rinse off my razor, and clear cold water appears to do my bidding. Seconds later, bearing its micro-burden of beard remnants, that water whisks itself down a little hole and disappears back into the greater puddle we call our sanitary sewer system. Quite the little feat, there, and all assumed and trusted every day of our lives. As they say, "out of sight - out of mind." The water lines coming in to the house, and the sanitary sewer lines that drain our house, are hidden and silent behind lath-and-plaster, PVC, cast iron, and dirt. Yet our lives are so dependent on this hidden engineering.
The upstairs bathroom sink - a high-traffic area for us in the morning and evening - is draining poorly these days. And that means consideration of its health... Are we just looking at a hair/soap scum problem that can be removed by chemical or physical means? Are we talking about some exploratory pipe-work (always a little nerve-wracking, since the exploration can cause damage to water seals and pipe threads, and you may discover a systemic rather than localized problem!)? Do I have the skill, the tools, the replacement supplies... all that I will need to explore and then re-connect my vital sink infrastructure before it is needed again for tooth-brushing and face-washing and the like...?? Oh, the trouble this little drain may cause!
And all about a simple little sink drain! "Can't we call a guy" and make this whole thing go away? Pay someone to bear the burden of uncertainty and to assume the mantle of authority when it comes to diagnosis, prognosis, system design, and reconstruction? Geez. Let's try to plunge it first, then pour some chemicals in... we can always "call a guy" later, right? He'll come in and fix it up like new, no matter what we do first... uh, right?
Funny little story, eh? Variants on this story happen millions of times every day, and with only the smallest of repercussions across the infrastructure of our lives. But then again, take out a major highway bridge across the Mississippi River, or flood out the pumps that keep Manhattan's water table below the level of the deepest subway, or even ignore a backed up sink drain for a couple days, and all hell breaks loose. Now you've got compounding problems everywhere. In my simple example, water begins to spill onto the flooring (which is the ceiling of a lower floor), or the physical/chemical initial treatment finally weakens the main drain pipe enough that a small (unseen) leak develops inside the wall and it begins a different kind of structural problem. Yikes.
We take so much for granted in our modern existence. Clean air - delivered to our lungs 24/7 due to the symbiotic functioning of sunlight and chlorophyll; clean water - evapotranspiration and filtering provided at no additional cost by sunlight and soils; safe food and shelter; and healthy bodies. We have to watch all of these things carefully, maintain their health so to speak, and I realize that there are limits to the ability of one individual/family to manage all of the huge systems that support modern living in America. But awareness and reflection - those are things we can and should control. Be aware, for your drain may be in need of some attention sometime soon. Don't ignore the warning signs, or casually procrastinate on action. Fixing the problem later may cost a lot more than you are willing (or able) to pay.
Peace, and have a joyous day of thanks. I know I will!
I go downstairs to perform ablutions - shaving with an electric razor (to avoid those nasty and potentially infected nicks and cuts), counting the remaining hairs on the top of my head, showering off all of the sleepiness and such. I turn the faucet handle at the sink to rinse off my razor, and clear cold water appears to do my bidding. Seconds later, bearing its micro-burden of beard remnants, that water whisks itself down a little hole and disappears back into the greater puddle we call our sanitary sewer system. Quite the little feat, there, and all assumed and trusted every day of our lives. As they say, "out of sight - out of mind." The water lines coming in to the house, and the sanitary sewer lines that drain our house, are hidden and silent behind lath-and-plaster, PVC, cast iron, and dirt. Yet our lives are so dependent on this hidden engineering.
The upstairs bathroom sink - a high-traffic area for us in the morning and evening - is draining poorly these days. And that means consideration of its health... Are we just looking at a hair/soap scum problem that can be removed by chemical or physical means? Are we talking about some exploratory pipe-work (always a little nerve-wracking, since the exploration can cause damage to water seals and pipe threads, and you may discover a systemic rather than localized problem!)? Do I have the skill, the tools, the replacement supplies... all that I will need to explore and then re-connect my vital sink infrastructure before it is needed again for tooth-brushing and face-washing and the like...?? Oh, the trouble this little drain may cause!
And all about a simple little sink drain! "Can't we call a guy" and make this whole thing go away? Pay someone to bear the burden of uncertainty and to assume the mantle of authority when it comes to diagnosis, prognosis, system design, and reconstruction? Geez. Let's try to plunge it first, then pour some chemicals in... we can always "call a guy" later, right? He'll come in and fix it up like new, no matter what we do first... uh, right?
Funny little story, eh? Variants on this story happen millions of times every day, and with only the smallest of repercussions across the infrastructure of our lives. But then again, take out a major highway bridge across the Mississippi River, or flood out the pumps that keep Manhattan's water table below the level of the deepest subway, or even ignore a backed up sink drain for a couple days, and all hell breaks loose. Now you've got compounding problems everywhere. In my simple example, water begins to spill onto the flooring (which is the ceiling of a lower floor), or the physical/chemical initial treatment finally weakens the main drain pipe enough that a small (unseen) leak develops inside the wall and it begins a different kind of structural problem. Yikes.
We take so much for granted in our modern existence. Clean air - delivered to our lungs 24/7 due to the symbiotic functioning of sunlight and chlorophyll; clean water - evapotranspiration and filtering provided at no additional cost by sunlight and soils; safe food and shelter; and healthy bodies. We have to watch all of these things carefully, maintain their health so to speak, and I realize that there are limits to the ability of one individual/family to manage all of the huge systems that support modern living in America. But awareness and reflection - those are things we can and should control. Be aware, for your drain may be in need of some attention sometime soon. Don't ignore the warning signs, or casually procrastinate on action. Fixing the problem later may cost a lot more than you are willing (or able) to pay.
Peace, and have a joyous day of thanks. I know I will!
Thursday, November 15, 2007
What's up with these hiccups?
So, I guess I am truly back in the land of chemo-therapy. The hiccups have plagued me throughout the day, and none so much as during a public lecture tonight. Sitting in the middle front, I am sure that the speaker could hear every one of them over the course of the hour. Should you ever read my blog, Prof. Prothero, I am sorry if they were any kind of distraction for you... they sure bugged the crap out of me! But these little irritating side effects must mean that the chemo is back on the job.
So, we also had a lengthy discussion with Dr. Blanke, where we talked about the value of each additional treatment to my overall survival, we talked about the December cruise, we talked about the study protocol and my cell counts. The survival numbers apparently are increased by a couple of percentage points with each of the later treatments (the takeaway here is that the earlier treatments are much more important than the later ones), the December cruise (and my unwillingness to travel as a tired, wiped out chemo patient) is definitely on for mid-December and I will not be receiving treatment after November 28 (hopefully, #11), and the study protocols for treatment are absolutely no different than the standard FOLFOX treatment that I would have received at Salem Hospital.
For those of you data hounds (you know who you are!), all of my blood counts were in great shape - nearly as high as the blood counts that I recorded before my first treatment. The ANC was 2.6 (double last week's 1.3), and all of the others were up there too. Go figure. I am getting another series of neupogen shots (beginning on Saturday afternoon) to help support my ability to get treatment #11 on the 28th. By the way, if I can NOT get treated on the 28th due to low blood counts, then #10 will have been the last one. I am ready to be done, whichever way that particular ball bounces.
Too tired to continue this blog... but thanks for your continued interest and support.
So, we also had a lengthy discussion with Dr. Blanke, where we talked about the value of each additional treatment to my overall survival, we talked about the December cruise, we talked about the study protocol and my cell counts. The survival numbers apparently are increased by a couple of percentage points with each of the later treatments (the takeaway here is that the earlier treatments are much more important than the later ones), the December cruise (and my unwillingness to travel as a tired, wiped out chemo patient) is definitely on for mid-December and I will not be receiving treatment after November 28 (hopefully, #11), and the study protocols for treatment are absolutely no different than the standard FOLFOX treatment that I would have received at Salem Hospital.
For those of you data hounds (you know who you are!), all of my blood counts were in great shape - nearly as high as the blood counts that I recorded before my first treatment. The ANC was 2.6 (double last week's 1.3), and all of the others were up there too. Go figure. I am getting another series of neupogen shots (beginning on Saturday afternoon) to help support my ability to get treatment #11 on the 28th. By the way, if I can NOT get treated on the 28th due to low blood counts, then #10 will have been the last one. I am ready to be done, whichever way that particular ball bounces.
Too tired to continue this blog... but thanks for your continued interest and support.
Wednesday, November 14, 2007
Treatment #10
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.
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.
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!
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! :)
Sunday, September 30, 2007
Living strong
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.
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.
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.
Sunday, August 26, 2007
Side effects I could live without...
OK. I guess I could really live without *any* of the side effects. And I think I've probably mentioned a few of these before... but this is the topic for the day. :)
(1) Scalded tongue - it feels like I have a permanently scalded tongue. This sensation sometimes extends into the tips of my teeth (upper front ones), and it is most certainly affecting my taste and appetite. As a result there are many dishes that I avoid because I do not want my appetite for them post-chemo to be ruined by the non-taste of them during chemo.
(2) Nosebleed/nose coldness - every night my nose bleeds and in the morning I have a bunch of coagulated blood/snot to deal with (usually in the shower). This is slowly causing my nostrils to ache, and I worry about what this means for my blood counts, but mostly its just an annoyance. So far, only twice has this happened during the day.
(3) Hypersensitivity to cold in my throat, hands, and foot - really cold liquids and foods make my throat and tongue hurt. In fact, if I eat something cold it makes my tongue feel like it is swelling and I cannot form words as a result. (No comments necessary from friends or family that might see this as a good thing!) Also, my hands are so sensitive to cold now that I have special thermal-insulated gloves by the refrigerator so I can lift the milk jug in the morning. I then microwave the milk to warm it before I put it on my cereal. And my toes in my left foot have been beginning to tingle on the cooler mornings while I walk to work from the Transit Center. Of the three, the foot discomfort is by far the most tolerable.
(4) Tiredness/weakness - which has been increasing (slowly), but it has become more noticeable this last week than before. I am tired of being tired. This is probably due to my natural high-activity habits. I can't tell you how many times I have started to say, "I don't know why, but I just need to lie down," and then realized that this is an expected effect of the chemo. So what - I still could live without it! :)
(5) Low tolerance - I am not sure how to describe this, but I feel less able to tolerate the small daily stresses. Clearly, this is tied to the tiredness that I describe above, but that doesn't mean it isn't a distinct side effect that I would rather not have.
So,let's just say that I am managing these days. And my support crew has been phenomenal! People are just great. Period. I do not think that I would be able to do all the things that my wife has done for me and our family if the circumstances were reversed, and my daughter is a real trooper when it comes to dealing with and understanding her Dad's flagging energy and what that means for doing stuff together. I love them both very much. Our extended family and friends have also been indispensable - in offering meals, fun gatherings, and any other support they or we can think of... This particular "side effect" of cancer is an OK one... and it has and will inform the rest of my life.
So, peace to all you readers out there. I am sorry if the blog has felt silent for a while, and will endeavor to pick up my microphone more regularly. Some days it feels like everything has been said already, but clearly that is not the case.
(1) Scalded tongue - it feels like I have a permanently scalded tongue. This sensation sometimes extends into the tips of my teeth (upper front ones), and it is most certainly affecting my taste and appetite. As a result there are many dishes that I avoid because I do not want my appetite for them post-chemo to be ruined by the non-taste of them during chemo.
(2) Nosebleed/nose coldness - every night my nose bleeds and in the morning I have a bunch of coagulated blood/snot to deal with (usually in the shower). This is slowly causing my nostrils to ache, and I worry about what this means for my blood counts, but mostly its just an annoyance. So far, only twice has this happened during the day.
(3) Hypersensitivity to cold in my throat, hands, and foot - really cold liquids and foods make my throat and tongue hurt. In fact, if I eat something cold it makes my tongue feel like it is swelling and I cannot form words as a result. (No comments necessary from friends or family that might see this as a good thing!) Also, my hands are so sensitive to cold now that I have special thermal-insulated gloves by the refrigerator so I can lift the milk jug in the morning. I then microwave the milk to warm it before I put it on my cereal. And my toes in my left foot have been beginning to tingle on the cooler mornings while I walk to work from the Transit Center. Of the three, the foot discomfort is by far the most tolerable.
(4) Tiredness/weakness - which has been increasing (slowly), but it has become more noticeable this last week than before. I am tired of being tired. This is probably due to my natural high-activity habits. I can't tell you how many times I have started to say, "I don't know why, but I just need to lie down," and then realized that this is an expected effect of the chemo. So what - I still could live without it! :)
(5) Low tolerance - I am not sure how to describe this, but I feel less able to tolerate the small daily stresses. Clearly, this is tied to the tiredness that I describe above, but that doesn't mean it isn't a distinct side effect that I would rather not have.
So,let's just say that I am managing these days. And my support crew has been phenomenal! People are just great. Period. I do not think that I would be able to do all the things that my wife has done for me and our family if the circumstances were reversed, and my daughter is a real trooper when it comes to dealing with and understanding her Dad's flagging energy and what that means for doing stuff together. I love them both very much. Our extended family and friends have also been indispensable - in offering meals, fun gatherings, and any other support they or we can think of... This particular "side effect" of cancer is an OK one... and it has and will inform the rest of my life.
So, peace to all you readers out there. I am sorry if the blog has felt silent for a while, and will endeavor to pick up my microphone more regularly. Some days it feels like everything has been said already, but clearly that is not the case.
Saturday, August 18, 2007
Life (as it is) in Chemo-World
As we all know, life and living is a series of time-snapshots. I wake up whenever I do (anywhen from 5am 'til 6:30am), step through a morning (and mid-day, and evening) ritual, and then go back to bed. Not too earthshaking, not particularly boring... you might have a similar routine, or not. My point here being that we take a lot of living and of life for granted. And I am absolutely certain that I have touched on these ideas before, but bear with me. I might surprise you!
Our routines help us to adjust to and accept the bumps in the road that pop up from time-to-time. Who would have thought that a diagnosis of colon cancer would set my professional career back on track as a State employee? And how could anyone predict that that work would feel so good to be doing (again)? Not this guy, that's for darned sure. But I do miss the carefree, unscheduled time that I used to get to spend with my daughter, and heartily look forward to the end of this treatment regimen. The support of friends, family, and new acquaintances as I travel the chemo-highway-to-health is an unexpected source of warmth and joy in my life.
So, how about a little advice from the road? From two different supportive friends, I offer the following weblink to you, my reader:
http://jama.ama-assn.org/cgi/content/short/298/7/754
Hopefully, if you cut-and-paste the link into your browser, you will be electronically transported to the virtual world of The Journal of the American Medical Association (JAMA). This is a summary of some recent research on nutrition and colon cancer (especially focused on us "survivors"), but good information for all of us to consider. It is in the "what goes in, what comes out" genre of non-fiction, and considers a little of "what may happen along the way", so to speak. I share it because I care about you (and because I care about me, about my wife, and most importantly, about my daughter and our collective eating habits). The full article is also worth reading, but you gotta pay to download it, I think. :( [Just for the record, I am not giving up filet mignon just yet.]
So, what else is new from Chemo-World, you ask? Not so much, really. My blood work continues to slowly adjust downward (expected, as the cumulative effect of the drugs continues to wear down the fast-replicating cells in my bone marrow and gut). I lost three pounds over the past two weeks, but again this is expected and OK. I am lying in bed today, recovering from my 6th (halfway done!) treatment last Wednesday, which is part of my chemo-routine/life. In case that routine is not firmly lodged in your mind, here's a brief synopsis:
(1) Get up early - drive 70 minutes to Portland - check in at Cancer Clinic by 8:30am
(2) Blood drawn - if OK compared to protocol, receive chemo over next 4 hours
(3) Leave Clinic with 5FU pump attached - sleep in car during drive home
(4) Become horizontal for rest of day
(5) Work next two days with 5FU pump attached, taking anti-emetic drugs
(6) Attempt to deal with constipation and heartburn effects of the anti-emetics and 5FU
(7) "De-access" 5FU pump, and deal with extreme fatigue and lack of appetite
(8) Assume horizontal resting position over next two days, with some exercise thrown in
Quite the routine, eh? I then return to work on the following Monday. There are other interesting details, like what I have to do to take a shower with a tube attached to my chest and a pump attached to the tube... let's just say that I have become an expert in the clinical use of Saran Wrap and waterproof medical tape (imagine thin, clear Duct Tape). I only have to perform that taping procedure on two mornings each two weeks, though, and it's just another (unpredicted) part of my chemo-routine.
That feels like enough typing for today... Live well, eat well, and love each other.
Our routines help us to adjust to and accept the bumps in the road that pop up from time-to-time. Who would have thought that a diagnosis of colon cancer would set my professional career back on track as a State employee? And how could anyone predict that that work would feel so good to be doing (again)? Not this guy, that's for darned sure. But I do miss the carefree, unscheduled time that I used to get to spend with my daughter, and heartily look forward to the end of this treatment regimen. The support of friends, family, and new acquaintances as I travel the chemo-highway-to-health is an unexpected source of warmth and joy in my life.
So, how about a little advice from the road? From two different supportive friends, I offer the following weblink to you, my reader:
http://jama.ama-assn.org/cgi/content/short/298/7/754
Hopefully, if you cut-and-paste the link into your browser, you will be electronically transported to the virtual world of The Journal of the American Medical Association (JAMA). This is a summary of some recent research on nutrition and colon cancer (especially focused on us "survivors"), but good information for all of us to consider. It is in the "what goes in, what comes out" genre of non-fiction, and considers a little of "what may happen along the way", so to speak. I share it because I care about you (and because I care about me, about my wife, and most importantly, about my daughter and our collective eating habits). The full article is also worth reading, but you gotta pay to download it, I think. :( [Just for the record, I am not giving up filet mignon just yet.]
So, what else is new from Chemo-World, you ask? Not so much, really. My blood work continues to slowly adjust downward (expected, as the cumulative effect of the drugs continues to wear down the fast-replicating cells in my bone marrow and gut). I lost three pounds over the past two weeks, but again this is expected and OK. I am lying in bed today, recovering from my 6th (halfway done!) treatment last Wednesday, which is part of my chemo-routine/life. In case that routine is not firmly lodged in your mind, here's a brief synopsis:
(1) Get up early - drive 70 minutes to Portland - check in at Cancer Clinic by 8:30am
(2) Blood drawn - if OK compared to protocol, receive chemo over next 4 hours
(3) Leave Clinic with 5FU pump attached - sleep in car during drive home
(4) Become horizontal for rest of day
(5) Work next two days with 5FU pump attached, taking anti-emetic drugs
(6) Attempt to deal with constipation and heartburn effects of the anti-emetics and 5FU
(7) "De-access" 5FU pump, and deal with extreme fatigue and lack of appetite
(8) Assume horizontal resting position over next two days, with some exercise thrown in
Quite the routine, eh? I then return to work on the following Monday. There are other interesting details, like what I have to do to take a shower with a tube attached to my chest and a pump attached to the tube... let's just say that I have become an expert in the clinical use of Saran Wrap and waterproof medical tape (imagine thin, clear Duct Tape). I only have to perform that taping procedure on two mornings each two weeks, though, and it's just another (unpredicted) part of my chemo-routine.
That feels like enough typing for today... Live well, eat well, and love each other.
Friday, August 10, 2007
You look great...
In many casual and not-so-casual conversations, I have heard that little phrase pretty often. And to be honest, I don't mind so much hearing it, really. It's a nice thing, a warm and safe thing, to hear. But it's led me to oh-so-many internal conversations about what exactly the speaker is referring to, and I know that that is not fair. But then, neither is cancer. There is a cynical part of me that wants to ask right back, "did I look so not-great before?" Or, "what did you expect to see, some emaciated version of me, some external evidence of (the tumor, the effects of chemo, my psyche as I deal with my diagnosis/treatment, etc.)?" I am not sure that "you look great" is such a kind thing to say.
I believe that everyone's intentions are for the best, and that a remark like this is not intended to be scrutinized too closely. But some days you can look great, and still be sick or feel awful. I currently live in an immune-compromised state 24/7 - meaning that my internal defenses against infection are poor - and I need to be very careful about what and where I eat, and close contact with people who are sick, and little nicks and cuts. My blood work has been exceptionally good before each chemo-treatment, but good is a relative term... "good" for a chemo-patient means that my white blood cell count (first line of defense against illness and infection) is still barely within the normal range for a healthy adult. This is also true of my platelet count (those little cells that provide the first line of defense when you start to bleed - they patch up the "hole" and form a blood clot) and my red blood cell count (good for carrying oxygen around my body and eliminating waste products through the filters of my liver and kidneys, you know, the whole *living* thing). Looking great has nothing to do with my actual health, and perhaps more to do with a perception of my emotional/psychological state, and it sounds like a superficial measure of me whenever I hear it.
I have a dear friend who recently experienced a catastrophic loss of hearing. I haven't seen him yet, but I have heard from him via email. He seems to be OK, from what I could glean from his printed words on my computer screen, and to look at him I bet you'd never know that his "new world" is a soundless one - or perhaps just a muffled one. I don't and can't know how this change affects him and his relationship to the world we share. But I do know that changes like this - a diagnosis of cancer, a complete loss of one of your senses - changes that you cannot immediately "see," are still very hard on a person. My heart goes out to him and his family as they deal with a big bump in the road of life. And I'm sure he still looks great.
Maybe it's better to say "gee, it's great to see you" rather than "you look great." My time with people is so much more valuable to me now than I ever recognized before. We sometimes struggle to express our feelings toward one another, and that little remark is certainly made with the best of intentions by people that care about me and that I care about. But we all know the saying about the road-to-hell, and paving, and good intentions...
Thanks for reading this drivel. My mood is still very good, and I feel good these days. The "off-week" after chemo is a time when things begin to feel "normal" just a bit. I needed to get this one blog post off my mind, so to speak, and now it's done. Have a great day!
I believe that everyone's intentions are for the best, and that a remark like this is not intended to be scrutinized too closely. But some days you can look great, and still be sick or feel awful. I currently live in an immune-compromised state 24/7 - meaning that my internal defenses against infection are poor - and I need to be very careful about what and where I eat, and close contact with people who are sick, and little nicks and cuts. My blood work has been exceptionally good before each chemo-treatment, but good is a relative term... "good" for a chemo-patient means that my white blood cell count (first line of defense against illness and infection) is still barely within the normal range for a healthy adult. This is also true of my platelet count (those little cells that provide the first line of defense when you start to bleed - they patch up the "hole" and form a blood clot) and my red blood cell count (good for carrying oxygen around my body and eliminating waste products through the filters of my liver and kidneys, you know, the whole *living* thing). Looking great has nothing to do with my actual health, and perhaps more to do with a perception of my emotional/psychological state, and it sounds like a superficial measure of me whenever I hear it.
I have a dear friend who recently experienced a catastrophic loss of hearing. I haven't seen him yet, but I have heard from him via email. He seems to be OK, from what I could glean from his printed words on my computer screen, and to look at him I bet you'd never know that his "new world" is a soundless one - or perhaps just a muffled one. I don't and can't know how this change affects him and his relationship to the world we share. But I do know that changes like this - a diagnosis of cancer, a complete loss of one of your senses - changes that you cannot immediately "see," are still very hard on a person. My heart goes out to him and his family as they deal with a big bump in the road of life. And I'm sure he still looks great.
Maybe it's better to say "gee, it's great to see you" rather than "you look great." My time with people is so much more valuable to me now than I ever recognized before. We sometimes struggle to express our feelings toward one another, and that little remark is certainly made with the best of intentions by people that care about me and that I care about. But we all know the saying about the road-to-hell, and paving, and good intentions...
Thanks for reading this drivel. My mood is still very good, and I feel good these days. The "off-week" after chemo is a time when things begin to feel "normal" just a bit. I needed to get this one blog post off my mind, so to speak, and now it's done. Have a great day!
Saturday, August 4, 2007
On distraction...
I generally have a simple morning routine. That is, I drag myself out of bed after some kind of fitful sleeping, perform my morning ablutions (these differ somewhat when I have my portable 5_FU pump attached), eat something for breakfast, make my lunch, and head out the door to catch a bus ride halfway to work. The walk to my office from the transit mall is about five blocks, and I usually plug myself into my iPod for a little musical interlude prior to the workday. Kinda sets the tone for that section of the day...
During my walk from the bus stop to my office early one morning, I distractedly noticed that the sprinkler system for the Capitol Mall green space was on, and that it made a lot of interesting mist rainbows in the early sunrise. Quite pretty, actually, and the rainbows seemed to dance together every so often (or maybe they were combining front-to-back, I don't recall exactly). The music in my ears, the dancing rainbows, the warm sunshine... very mellow and distracting.
Chsssshhht... Chsssshhht... Chsssshhht... Sound familiar? The sprinkling system has a rhythm of its own, and was mildly noticeable over the music in my ears. But I really didn't pay much attention. After all, the landscape workers are very good about making sure that the water mainly lands on the grass and does not sprinkle the concrete. I continued to walk toward work, following the paving stone pathways, and even hesitated once when one of the sprinkler jets appeared to be headed my way. It stopped (appropriately) before I would have been hit and returned to its starting point with its staccato ch-ch-ch-ch-ch-ch chatter before resuming the steady chsssshhht-chsssshhht-chsssshhht rhythm.
I walked over some damp sidewalk/paving stones to await the crossing signal, paying little attention to the sprinklers, and waited for electronic permission to cross the street. The sun was still warm, and several cars were awaiting the light signal to proceed on their merry way to somewhere else... Imagine their occupants' surprise and delight to see a man (yours truly) take a direct hit from the sprinkler system. Jacket, tie, shirt and pants, were instantly not-dry... but I had a bemused smile on my face. Sometimes, it is just plain good to be distracted, and the minimal dousing with water didn't hurt me in the least.
So, I apologize to all you folks out there in the land of weblogs, who may have interpreted my silence over the past few days as indicative of some kind of trouble in my world. I am doing well, though the chemo-therapy seems harder these days. I am trying out some cancer-sensitive exercise and flexibility training, and have met a WONDERFUL trainer that I hope to be able to work with over the next several months. And work has been busy and challenging, which are both good things. In short, I have been distracted. :)
Chsssshhht... Chsssshhht... Chsssshhht...
During my walk from the bus stop to my office early one morning, I distractedly noticed that the sprinkler system for the Capitol Mall green space was on, and that it made a lot of interesting mist rainbows in the early sunrise. Quite pretty, actually, and the rainbows seemed to dance together every so often (or maybe they were combining front-to-back, I don't recall exactly). The music in my ears, the dancing rainbows, the warm sunshine... very mellow and distracting.
Chsssshhht... Chsssshhht... Chsssshhht... Sound familiar? The sprinkling system has a rhythm of its own, and was mildly noticeable over the music in my ears. But I really didn't pay much attention. After all, the landscape workers are very good about making sure that the water mainly lands on the grass and does not sprinkle the concrete. I continued to walk toward work, following the paving stone pathways, and even hesitated once when one of the sprinkler jets appeared to be headed my way. It stopped (appropriately) before I would have been hit and returned to its starting point with its staccato ch-ch-ch-ch-ch-ch chatter before resuming the steady chsssshhht-chsssshhht-chsssshhht rhythm.
I walked over some damp sidewalk/paving stones to await the crossing signal, paying little attention to the sprinklers, and waited for electronic permission to cross the street. The sun was still warm, and several cars were awaiting the light signal to proceed on their merry way to somewhere else... Imagine their occupants' surprise and delight to see a man (yours truly) take a direct hit from the sprinkler system. Jacket, tie, shirt and pants, were instantly not-dry... but I had a bemused smile on my face. Sometimes, it is just plain good to be distracted, and the minimal dousing with water didn't hurt me in the least.
So, I apologize to all you folks out there in the land of weblogs, who may have interpreted my silence over the past few days as indicative of some kind of trouble in my world. I am doing well, though the chemo-therapy seems harder these days. I am trying out some cancer-sensitive exercise and flexibility training, and have met a WONDERFUL trainer that I hope to be able to work with over the next several months. And work has been busy and challenging, which are both good things. In short, I have been distracted. :)
Chsssshhht... Chsssshhht... Chsssshhht...
Friday, July 27, 2007
Wow
Sometimes, as a cancer patient/survivor/support person, you hear amazing things. Insensitive things, gentle things. Caring things, glaring things. And most of them are just unbelievable... in their tenderness or their blunt hurt. This is life, I suppose.
Today, I read Leroy Siever's cancer blog (http://www.npr.org/blogs/mycancer/), as I do just about every day. His journey is hard to read, even as a co-traveler. I hurt for him. But today's blog entry (27 July 2007) is worth reading because he says a lot of things that I cannot say better. (Not the anger bit, but the description of cancer's effect on living...)
Peace and understanding to everyone on this fine day.
Today, I read Leroy Siever's cancer blog (http://www.npr.org/blogs/mycancer/), as I do just about every day. His journey is hard to read, even as a co-traveler. I hurt for him. But today's blog entry (27 July 2007) is worth reading because he says a lot of things that I cannot say better. (Not the anger bit, but the description of cancer's effect on living...)
Peace and understanding to everyone on this fine day.
Wednesday, July 25, 2007
Reading this summer...
So, in my spare time I have been doing a little reading. Light, summer reading... the kind that should take your mind off work and the other more-immediate cares of your life, right? I haven't (yet) succumbed to the devilish temptation to re-read the entire Harry Potter series, though there are others in my house for whom this is "Job-1." And I am not even considering the piles and pages of work-related articles and policies that occupy the bulk of my work-hours.
Nope. I am talking about the books that I choose to read for enjoyment and relaxation. In July, I have read Zbigniew Brzezinski's "Second Chance", which describes the last three US presidents' missed opportunities to advance global leadership from a position of supported power; John Steinbeck's "Bombs Away", which is an unapologetic propaganda piece written in 1942 to encourage young Americans to volunteer to serve in the fledgling Army Air Force flying B-17s and B-24s and to encourage their parents to let them do so; Janny Wurts' "To Ride Hell's Chasm", which is a completely fantastic exploration of the cultural and historical events that can drive an individual to utterly impossible feats of imagination in pursuit of loyalty and honor (in truth, the book's genre would be fantasy fiction, but the journey the main character undertakes is all too real); and finally, James De Kay's "Chronicles of the Frigate "Macedonian": 1809-1922, which lightly details the history of one of America's war prizes from the War of 1812. Throw in a bunch of newspapers and magazines, and you have my July reading list.
So what. Lots of people read lots of stuff each summer (and do a much better job summarizing and reviewing what they have read, or at least get paid for their efforts!) When I read though, I really try to put myself in the time-place of the events that I read about (even if that place is imaginary). Not so hard with the first one, since I lived through it, but still worth the effort. Try though we might, we all live in a limited-dimensional world. There are too many things going on simultaneously, everywhere, that we cannot even know about them, much less incorporate it all into the impacts on our lives. Our presidents have a lot on their plates... sometimes more than they can handle, regularly more than they need, and too often supplemented by unnecessary adventures. Thank you, Mr. Brzezinski, for reminding me of that.
Our young people are not told often enough how smart and capable they are. John Steinbeck reminded me that I never felt told that "you can't do that" as a child. Oh sure, I was told not to climb on the fence overlooking Niagara Falls, and certainly heard my fair share of, "No, and I mean it!" as a child. But I'm talking about the kind of discouragement that young people hear... about body size, about job opportunities, about achievement, and about playing together. We don't know what our (or their) futures will require in terms of skills and abilities, but we need to strongly encourage our selves and our young people to do many, many things. Building on innate curiosity and playful invention will always be the strength of our future, and our kids embody those traits. Let's do a lot more playing.
Fantasy fiction is a great escape from reality. No kidding. But it is a kind of work too. The author takes a kernel of a plot, and fleshes it out to challenge the reader. Fantasy requires whole worlds to be imagined - histories, cultures, geographies, habits, and tricks. The reader can immerse herself to whatever depth, and can be swept into an un-reality with ease. This reader, however, is too analytical for that. :) I pick at the story-line, looking for inconsistencies and foibles. It's part of my enjoyment, but it is a handicap too. The point here is that we are all driven by our pasts and our visions of our futures. We all play roles in the unwritten books of other peoples' lives, and our awareness of that fact can be both burdensome and emancipating. We need to walk gently, but confidently, into our future, and be gentle with ourselves.
Finally, historical stuff makes me feel grounded. You know, in spite of the whole eco-enviro-political disaster called modern Western life, we are really lucky folks. Just a few short decades ago, we humans battled debilitating diseases and illnesses on a regular basis. Sickness and death, especially for the young, was more often the rule than the exception... and some of the fevers were particularly nasty. Those diseases, and illnesses, and social situations, still exist in the world. And they are larger and longer-lasting than me. It is a blessing to be able to consider them, and an obligation to remain aware of them and act to eliminate them, and for these reasons, too, I am a lucky man.
Enjoy the week! It's sunny here, and I feel great today.
Nope. I am talking about the books that I choose to read for enjoyment and relaxation. In July, I have read Zbigniew Brzezinski's "Second Chance", which describes the last three US presidents' missed opportunities to advance global leadership from a position of supported power; John Steinbeck's "Bombs Away", which is an unapologetic propaganda piece written in 1942 to encourage young Americans to volunteer to serve in the fledgling Army Air Force flying B-17s and B-24s and to encourage their parents to let them do so; Janny Wurts' "To Ride Hell's Chasm", which is a completely fantastic exploration of the cultural and historical events that can drive an individual to utterly impossible feats of imagination in pursuit of loyalty and honor (in truth, the book's genre would be fantasy fiction, but the journey the main character undertakes is all too real); and finally, James De Kay's "Chronicles of the Frigate "Macedonian": 1809-1922, which lightly details the history of one of America's war prizes from the War of 1812. Throw in a bunch of newspapers and magazines, and you have my July reading list.
So what. Lots of people read lots of stuff each summer (and do a much better job summarizing and reviewing what they have read, or at least get paid for their efforts!) When I read though, I really try to put myself in the time-place of the events that I read about (even if that place is imaginary). Not so hard with the first one, since I lived through it, but still worth the effort. Try though we might, we all live in a limited-dimensional world. There are too many things going on simultaneously, everywhere, that we cannot even know about them, much less incorporate it all into the impacts on our lives. Our presidents have a lot on their plates... sometimes more than they can handle, regularly more than they need, and too often supplemented by unnecessary adventures. Thank you, Mr. Brzezinski, for reminding me of that.
Our young people are not told often enough how smart and capable they are. John Steinbeck reminded me that I never felt told that "you can't do that" as a child. Oh sure, I was told not to climb on the fence overlooking Niagara Falls, and certainly heard my fair share of, "No, and I mean it!" as a child. But I'm talking about the kind of discouragement that young people hear... about body size, about job opportunities, about achievement, and about playing together. We don't know what our (or their) futures will require in terms of skills and abilities, but we need to strongly encourage our selves and our young people to do many, many things. Building on innate curiosity and playful invention will always be the strength of our future, and our kids embody those traits. Let's do a lot more playing.
Fantasy fiction is a great escape from reality. No kidding. But it is a kind of work too. The author takes a kernel of a plot, and fleshes it out to challenge the reader. Fantasy requires whole worlds to be imagined - histories, cultures, geographies, habits, and tricks. The reader can immerse herself to whatever depth, and can be swept into an un-reality with ease. This reader, however, is too analytical for that. :) I pick at the story-line, looking for inconsistencies and foibles. It's part of my enjoyment, but it is a handicap too. The point here is that we are all driven by our pasts and our visions of our futures. We all play roles in the unwritten books of other peoples' lives, and our awareness of that fact can be both burdensome and emancipating. We need to walk gently, but confidently, into our future, and be gentle with ourselves.
Finally, historical stuff makes me feel grounded. You know, in spite of the whole eco-enviro-political disaster called modern Western life, we are really lucky folks. Just a few short decades ago, we humans battled debilitating diseases and illnesses on a regular basis. Sickness and death, especially for the young, was more often the rule than the exception... and some of the fevers were particularly nasty. Those diseases, and illnesses, and social situations, still exist in the world. And they are larger and longer-lasting than me. It is a blessing to be able to consider them, and an obligation to remain aware of them and act to eliminate them, and for these reasons, too, I am a lucky man.
Enjoy the week! It's sunny here, and I feel great today.
Thursday, July 19, 2007
Acupuncture and Massage
I thought about calling this post something clever, like "invasion of the body scratchers" or "extreme cancer therapy," but I decided that those titles would be a little disrespectful to some serious practitioners. My recent adventures in massage and acupuncture, though, do deserve a [long... fair warning!] blog entry. So here goes...
Friends, acquaintances, virtual friends' blogs and descriptions on the Internet, and caring family members have all suggested these complementary therapies at one time or another (some of you were a little pushy - you know who you are!) And some of you KNOW how much I have enjoyed massages in the past. So it wasn't very difficult to convince me of the value of massage. Acupuncture, though, was not such a no-brainer for Mister Type-A Analyst-Man...
First thing - I needed to check with the clinical trial doctors to verify that there were no restrictions in the protocols to my using these techniques during my chemotherapy. For massage, the word was that it is allowed as long as my platelet counts remain OK. And for the acupuncture, they really want both the platelet counts and white blood cell counts to be OK. Apparently, the risk of bruising with massage and acupuncture is higher than normal when platelet counts are suppressed. And acupuncture, with its needle penetration of the skin, has a risk of infection that suppressed white blood cell concentrations may not be able to counter.
(To get everyone on the same page here, the normal range for white blood cells is 3.4 to 10.0 thousand cells per microliter, for platelets it is 150 to 420 thousand cells per microliter, and, as bonus unrelated information for you diligent blog readers, the red blood cell normal range is 4.3 to 5.9 million cells per microliter. My latest CBC has my counts for WBC, platelets, and RBC, respectively, at 3.4, 149, and 4.31 - which are all at the very lowest end of the normal range or just below it. The docs are not worried until the numbers get down to about 30% of the normal range for any key indicators.) OK, so now we know that it is/was OK for me to get massage and acupuncture if I was/am so inclined. And I was. Hence the blog entry, duh!
Massage: not exactly what I expected, but then I was not exactly sure about the whole expectation thing in the first place. The massage therapist is a wonderful man who has given massage therapy to many cancer patients. In fact, he was the one that first indicated that I needed to contact my docs to get their approval. The session began with a physical/medical history - so he would know where I might have surgically-implanted devices like the PowerPort, or metal pins/plates from wild adventure days. No, other than the fillings in my teeth, and the glasses on my face, no implants other than Mr. PowerPort and he is pretty darned obvious even to the casual observer. The massage was about thirty minutes long, and he used a warming oil and peaceful music to relax me and push away the thoughts and stresses. Though a much softer/lighter touch than I am used to, I expect that I will see him at least every other week.
Acupuncture: This was quite a trip. As I have never done this before, and I am generally an analytical thinker, the Eastern tradition that acupuncture relies upon was not really on my radar screen when I was diagnosed. But the local scuttlebutt informed me of an MD that is also an acupuncturist, and she comes highly recommended, so I thought I'd give it a try. And it was OK. We discussed my medical and physical history at some length, she palpated several areas on my torso, and then started with the needles. First one to the forehead, and then a smattering down my sternum and around my abdomen. One each to the sides of my groin, then two each just below each knee and another in each foot. Oh, and one each at my wrists. These points were chosen to enhance the release of toxins and toxic energy from my body, and she opened a window so that that "bad" energy that was flowing out of my feet could escape from the room. She also applied some heat to the needles below my knees, using something I think is called a "moxa," and it felt like I was under a heat lamp on that entire lower leg. All-in-all, very interesting and I did feel a bit more energetic the next day. I have another appointment for next Tuesday (to try to help clean out the post-chemotherapy constipatory toxins, I hope). She thinks I should come in every Monday for pre- and post-chomtherapy acupuncture support, but I am still deciding how that might work for me.
So... long post this time. I trust it was/is worth it to read so much summarial drivel. Now I can feel less guilty, though, about my lame blog posting frequency. Today's chemo went pretty quickly, but I am very tired and have weird muscle spasms in my shin muscles, feet, and my right index finger.
Thanks for visiting, and I hope to post a little more frequently.
Friends, acquaintances, virtual friends' blogs and descriptions on the Internet, and caring family members have all suggested these complementary therapies at one time or another (some of you were a little pushy - you know who you are!) And some of you KNOW how much I have enjoyed massages in the past. So it wasn't very difficult to convince me of the value of massage. Acupuncture, though, was not such a no-brainer for Mister Type-A Analyst-Man...
First thing - I needed to check with the clinical trial doctors to verify that there were no restrictions in the protocols to my using these techniques during my chemotherapy. For massage, the word was that it is allowed as long as my platelet counts remain OK. And for the acupuncture, they really want both the platelet counts and white blood cell counts to be OK. Apparently, the risk of bruising with massage and acupuncture is higher than normal when platelet counts are suppressed. And acupuncture, with its needle penetration of the skin, has a risk of infection that suppressed white blood cell concentrations may not be able to counter.
(To get everyone on the same page here, the normal range for white blood cells is 3.4 to 10.0 thousand cells per microliter, for platelets it is 150 to 420 thousand cells per microliter, and, as bonus unrelated information for you diligent blog readers, the red blood cell normal range is 4.3 to 5.9 million cells per microliter. My latest CBC has my counts for WBC, platelets, and RBC, respectively, at 3.4, 149, and 4.31 - which are all at the very lowest end of the normal range or just below it. The docs are not worried until the numbers get down to about 30% of the normal range for any key indicators.) OK, so now we know that it is/was OK for me to get massage and acupuncture if I was/am so inclined. And I was. Hence the blog entry, duh!
Massage: not exactly what I expected, but then I was not exactly sure about the whole expectation thing in the first place. The massage therapist is a wonderful man who has given massage therapy to many cancer patients. In fact, he was the one that first indicated that I needed to contact my docs to get their approval. The session began with a physical/medical history - so he would know where I might have surgically-implanted devices like the PowerPort, or metal pins/plates from wild adventure days. No, other than the fillings in my teeth, and the glasses on my face, no implants other than Mr. PowerPort and he is pretty darned obvious even to the casual observer. The massage was about thirty minutes long, and he used a warming oil and peaceful music to relax me and push away the thoughts and stresses. Though a much softer/lighter touch than I am used to, I expect that I will see him at least every other week.
Acupuncture: This was quite a trip. As I have never done this before, and I am generally an analytical thinker, the Eastern tradition that acupuncture relies upon was not really on my radar screen when I was diagnosed. But the local scuttlebutt informed me of an MD that is also an acupuncturist, and she comes highly recommended, so I thought I'd give it a try. And it was OK. We discussed my medical and physical history at some length, she palpated several areas on my torso, and then started with the needles. First one to the forehead, and then a smattering down my sternum and around my abdomen. One each to the sides of my groin, then two each just below each knee and another in each foot. Oh, and one each at my wrists. These points were chosen to enhance the release of toxins and toxic energy from my body, and she opened a window so that that "bad" energy that was flowing out of my feet could escape from the room. She also applied some heat to the needles below my knees, using something I think is called a "moxa," and it felt like I was under a heat lamp on that entire lower leg. All-in-all, very interesting and I did feel a bit more energetic the next day. I have another appointment for next Tuesday (to try to help clean out the post-chemotherapy constipatory toxins, I hope). She thinks I should come in every Monday for pre- and post-chomtherapy acupuncture support, but I am still deciding how that might work for me.
So... long post this time. I trust it was/is worth it to read so much summarial drivel. Now I can feel less guilty, though, about my lame blog posting frequency. Today's chemo went pretty quickly, but I am very tired and have weird muscle spasms in my shin muscles, feet, and my right index finger.
Thanks for visiting, and I hope to post a little more frequently.
Wednesday, July 11, 2007
The people around us
Two nights in a row. I've slept (mostly) through two nights in a row now. And the heat wave outside continues to crash down upon us. But lorazepam is my friend, and the ceiling fan is my friend, and I feel almost rested again. Sleep will do that for you, you know. I still recall the sleep deprivation known as "having a newborn," and am humbled by that memory.
Then, as now, the support of friends, family, and sometimes strangers, made it possible to see and live the joy of a growing child. Without even thinking, we shared our joy through tired smiling faces, and stories of other children and other sleepless nights and other parents' journeys.
Cancer-world is a hard place, especially so for the "close-support" people in my life. While seemingly "natural" to expect the patient/survivor to need extra space, and extra support, and even extra silences, our closest supporters are often treated differently. To them, the casual question, "how are you?" becomes a time bomb, laden with expectation. As with the patient myself, this simple question asks the receiver to assess the questioner's real intent, to assess their own energy for talking about "the topic", to assess their personal maelstrom of feelings - and then deliver an answer. Is it glib? Is it profound? Is it tired? And how does the questioner feel about this answer? Do they feel put off? It's a minefield not unlike the one trod by the patient, by me, when this question arises...
I love my little corner of the world, and all the wonderful people and personalities that share it. I have never felt so strangely connected to everything as I do these days. This is an amazingly poignant result of a surprisingly unexpected cancer diagnosis. But I worry a bit about how hard this journey is for my support team. Sometimes, we all just need to forget the reality of cancer, and forget that we are dealing with a "real nasty," and just live.
"No, really, I'm fine. I'm not hiding anything from you. I just need to feel like this thing doesn't completely dominate the me, the us. If I need to talk about it all the time, I lose sight of anything else. Please, just let's talk about how hot it is, or the latest unbelievable news report from DC, or how pretty the summer is turning out to be this year. Yes, I am really OK. I'm not hiding anything from you. Really. How about that HR by Ichiro?!? Inside the park and everything. Man, oh man can that boy run!"
Peace.
Then, as now, the support of friends, family, and sometimes strangers, made it possible to see and live the joy of a growing child. Without even thinking, we shared our joy through tired smiling faces, and stories of other children and other sleepless nights and other parents' journeys.
Cancer-world is a hard place, especially so for the "close-support" people in my life. While seemingly "natural" to expect the patient/survivor to need extra space, and extra support, and even extra silences, our closest supporters are often treated differently. To them, the casual question, "how are you?" becomes a time bomb, laden with expectation. As with the patient myself, this simple question asks the receiver to assess the questioner's real intent, to assess their own energy for talking about "the topic", to assess their personal maelstrom of feelings - and then deliver an answer. Is it glib? Is it profound? Is it tired? And how does the questioner feel about this answer? Do they feel put off? It's a minefield not unlike the one trod by the patient, by me, when this question arises...
I love my little corner of the world, and all the wonderful people and personalities that share it. I have never felt so strangely connected to everything as I do these days. This is an amazingly poignant result of a surprisingly unexpected cancer diagnosis. But I worry a bit about how hard this journey is for my support team. Sometimes, we all just need to forget the reality of cancer, and forget that we are dealing with a "real nasty," and just live.
"No, really, I'm fine. I'm not hiding anything from you. I just need to feel like this thing doesn't completely dominate the me, the us. If I need to talk about it all the time, I lose sight of anything else. Please, just let's talk about how hot it is, or the latest unbelievable news report from DC, or how pretty the summer is turning out to be this year. Yes, I am really OK. I'm not hiding anything from you. Really. How about that HR by Ichiro?!? Inside the park and everything. Man, oh man can that boy run!"
Peace.
Sunday, July 8, 2007
Lucky day... missed by one!
I just realized that I should have posted this note yesterday! You know, 7/7/07 and all. Alas, it was not to be. Had to run around in the morning making deliveries (bed and chair to the in-laws, car to be cleaned, you know - really important stuff), and then when we disconnected the 5-FU pump (ah, that's a relief)... my energy just seemed to collapse. I spent most of the rest of the day in the recliner, with droopy eyelids, though I managed to rally for a couple of bites of steak and roasted potatoes for dinner. So far, I have had a moderate appetite and no real changes related to taste. And when I manage to start eating, I seem to be able to continue, but sometimes I am not much interested in food.
The night, though, was another story altogether. Sleep was elusive and intermittent, and I felt thirsty all the time. I heard at least three different freight trains whistle their way through town (hoooooot-hoooooot, hoot, hooooooot! before each at-grade crossing, and there must be a dozen of those). This morning, I managed to get up and function for a couple of hours - even made french toast for breakfast! - before I collapsed back into bed, under a down comforter, for two solid hours. And now I am watching the baseball game (Mariners-Oakland) and drifting around the Internet.
But I kind of wanted to write about luck. As in, what does that mean anyways? Is it lucky to have the overwhelming support of friends and family through this adventure? Is it unlucky that I have to tread this path through life? Would other choices have lead to a different today? (I have to think the answer to that question is "of course," but not necessarily due to luck.) Lots of folks got married yesterday, all over the country (and world, I imagine) due to the propitious alignment of numbers on a calendar. I trust and hope that their future lives together are more firmly grounded than that. But interestingly it seems that serious decisions like that are made daily with a nod toward lucky conditions. In a recent issue of The National Geographic, there is an article describing the phenomenal growth of the Chinese manufacturing sector, and its effects on rural lives. It appears that beyond their innate entrepreneurial business sense, Chinese business owners make major decisions are made in consultation with feng shui experts. For some reason, I thought that feng shui was more about internal living arrangements than arranging business parks and timing moves, but I apparently was wrong. Having consulted feng shui, is the business owner lucky if it works out? In the absence of feng shui, would the decision be better or worse? Does feng shui get blamed for poor outcomes?
"Luck favors the prepared" is a motto that I first remember hearing as a sales representative-in-training in textbook publishing. As with most sales positions, there are many competitors in a limited buying market. And we had to have the right products in the right hands at the right time... nothing is worse than arriving with a competitive product right AFTER a decision has been made, eh? So what, you ask, does this have to do with colon cancer? Just this... we are all given time to prepare our lives for unexpected changes. Some call this karma. Some call it luck. I call it living a purposed life (with apologies to the popular psychologies out there that aver the same thesis). Trying my best to do the right things, to live the right way, and to forgive myself for missteps. Helping out whenever I can and to the best of my abilities (even if sometime those abilities fall short of expectations). Accepting fault in others, without judgment (this one requires work, you know!), is a piece of my karmic plan.
Have a wonderful, normal, lucky week!
The night, though, was another story altogether. Sleep was elusive and intermittent, and I felt thirsty all the time. I heard at least three different freight trains whistle their way through town (hoooooot-hoooooot, hoot, hooooooot! before each at-grade crossing, and there must be a dozen of those). This morning, I managed to get up and function for a couple of hours - even made french toast for breakfast! - before I collapsed back into bed, under a down comforter, for two solid hours. And now I am watching the baseball game (Mariners-Oakland) and drifting around the Internet.
But I kind of wanted to write about luck. As in, what does that mean anyways? Is it lucky to have the overwhelming support of friends and family through this adventure? Is it unlucky that I have to tread this path through life? Would other choices have lead to a different today? (I have to think the answer to that question is "of course," but not necessarily due to luck.) Lots of folks got married yesterday, all over the country (and world, I imagine) due to the propitious alignment of numbers on a calendar. I trust and hope that their future lives together are more firmly grounded than that. But interestingly it seems that serious decisions like that are made daily with a nod toward lucky conditions. In a recent issue of The National Geographic, there is an article describing the phenomenal growth of the Chinese manufacturing sector, and its effects on rural lives. It appears that beyond their innate entrepreneurial business sense, Chinese business owners make major decisions are made in consultation with feng shui experts. For some reason, I thought that feng shui was more about internal living arrangements than arranging business parks and timing moves, but I apparently was wrong. Having consulted feng shui, is the business owner lucky if it works out? In the absence of feng shui, would the decision be better or worse? Does feng shui get blamed for poor outcomes?
"Luck favors the prepared" is a motto that I first remember hearing as a sales representative-in-training in textbook publishing. As with most sales positions, there are many competitors in a limited buying market. And we had to have the right products in the right hands at the right time... nothing is worse than arriving with a competitive product right AFTER a decision has been made, eh? So what, you ask, does this have to do with colon cancer? Just this... we are all given time to prepare our lives for unexpected changes. Some call this karma. Some call it luck. I call it living a purposed life (with apologies to the popular psychologies out there that aver the same thesis). Trying my best to do the right things, to live the right way, and to forgive myself for missteps. Helping out whenever I can and to the best of my abilities (even if sometime those abilities fall short of expectations). Accepting fault in others, without judgment (this one requires work, you know!), is a piece of my karmic plan.
Have a wonderful, normal, lucky week!
Friday, July 6, 2007
General update
Hi all,
One-fourth of the way done now... 3 treatments in the past and 9 in the future. Yesterday's action was a bit quicker than the previous two, in part due to a subtle change in regimen. I don't really know the details (though I intend to send an email to the study PI in order to better understand it). Apparently there has been recent published research that suggested that the sugar and salt solutions that were administered for 30 minutes prior to and after the oxaliplatin were at best unnecessary and at worst were detrimental to reducing the side effects associated with the oxaliplatin. So when they were taken off the regimen, I received an extra 90 minutes of my life back (30 minutes on each end for the actual drip, and an approximate 30 minutes involved in awaiting the delivery and hooking up/disconnecting lines). Yay! - if the research is correct that is...
Had a long-ish telephone conversation with the clinical pharmacist involved in my treatment about the half-life of the chemo. He indicated that it varied from person-to-person, but that it will take anywhere from 4 to 6 months after the last treatment for my body to flush all of the chemicals down to an "undetectable" level. This roughly corresponds to the initial math I did, which is somewhat sobering. I also asked him about the dose of steroid that I am receiving, and he indicated that it was actually LOWER than the dose I would receive if I wasn't in the study, since it reacts sympathetically with the Aprepatin (Emend). He said that after the anti-emetic trial is done (3 more treatments, I think), he would be willing to try reducing the level of dexamethasone - but that the anti-emetic properties of the drug cocktail might be affected. I thanked him and said, "let's see how the next few treatments go before we try any of that." So that's the news on those previous posts - "Half-lives" and "Steroids."
The nurses involved in my treatment all expressed surprise at the interesting scalp/nose rash that developed on the first Monday after mt last treatment. It was quite pink, and a little bit bumpy, and eventually flaked away as would a sunburn. But it only happened on the top of my head and nose (not on my neck or ears, as you would expect with sunburn) and I wasn't REALLY out in the sun all that long. A second theory involving a hat purchase at Goodwill (97 cents, and I was cold while shopping for Fourth of July regalia), but - I know you won't believe this part - I didn't wear it on my nose and it did cover my ears. Weird. My other symptoms of hiccups, and heartburn, and constipation, and finger tingles, and throat tingles, and jaw pain, are all known and somewhat expected. We are trying a different combination of DulcoLax and Sennokot-S for the constipation, and the Prilosec OTC is handling the heartburn very well. The others I must just tolerate.
On a much lighter note, our annual 4th of July bash was a sparkling success. It was so great to be able to host it again, and all the neighbors, friends, and relatives that managed to come by were so pleased to see us all up and about and looking/acting so normally. I received an extra dose of hugs, and some people came back for seconds. Being surrounded by caring people is the best medicine anyone could ever ask for, and even the folks that couldn't make it this year sent very nice notes. As I have said before - and it's important to me to repeat it - I am a very lucky guy. Here's a personal "WHOOP-WHOOP" for all of you folks.
One-fourth of the way done now... 3 treatments in the past and 9 in the future. Yesterday's action was a bit quicker than the previous two, in part due to a subtle change in regimen. I don't really know the details (though I intend to send an email to the study PI in order to better understand it). Apparently there has been recent published research that suggested that the sugar and salt solutions that were administered for 30 minutes prior to and after the oxaliplatin were at best unnecessary and at worst were detrimental to reducing the side effects associated with the oxaliplatin. So when they were taken off the regimen, I received an extra 90 minutes of my life back (30 minutes on each end for the actual drip, and an approximate 30 minutes involved in awaiting the delivery and hooking up/disconnecting lines). Yay! - if the research is correct that is...
Had a long-ish telephone conversation with the clinical pharmacist involved in my treatment about the half-life of the chemo. He indicated that it varied from person-to-person, but that it will take anywhere from 4 to 6 months after the last treatment for my body to flush all of the chemicals down to an "undetectable" level. This roughly corresponds to the initial math I did, which is somewhat sobering. I also asked him about the dose of steroid that I am receiving, and he indicated that it was actually LOWER than the dose I would receive if I wasn't in the study, since it reacts sympathetically with the Aprepatin (Emend). He said that after the anti-emetic trial is done (3 more treatments, I think), he would be willing to try reducing the level of dexamethasone - but that the anti-emetic properties of the drug cocktail might be affected. I thanked him and said, "let's see how the next few treatments go before we try any of that." So that's the news on those previous posts - "Half-lives" and "Steroids."
The nurses involved in my treatment all expressed surprise at the interesting scalp/nose rash that developed on the first Monday after mt last treatment. It was quite pink, and a little bit bumpy, and eventually flaked away as would a sunburn. But it only happened on the top of my head and nose (not on my neck or ears, as you would expect with sunburn) and I wasn't REALLY out in the sun all that long. A second theory involving a hat purchase at Goodwill (97 cents, and I was cold while shopping for Fourth of July regalia), but - I know you won't believe this part - I didn't wear it on my nose and it did cover my ears. Weird. My other symptoms of hiccups, and heartburn, and constipation, and finger tingles, and throat tingles, and jaw pain, are all known and somewhat expected. We are trying a different combination of DulcoLax and Sennokot-S for the constipation, and the Prilosec OTC is handling the heartburn very well. The others I must just tolerate.
On a much lighter note, our annual 4th of July bash was a sparkling success. It was so great to be able to host it again, and all the neighbors, friends, and relatives that managed to come by were so pleased to see us all up and about and looking/acting so normally. I received an extra dose of hugs, and some people came back for seconds. Being surrounded by caring people is the best medicine anyone could ever ask for, and even the folks that couldn't make it this year sent very nice notes. As I have said before - and it's important to me to repeat it - I am a very lucky guy. Here's a personal "WHOOP-WHOOP" for all of you folks.
Sunday, July 1, 2007
Steroids
Well, I've had two complete cycles of chemotherapy now - that is, I have endured two rounds of treatment (IV infusion, followed by 5FU pump for 48 hours) and the following days of recovery. The recovery seems to take about 5 days, and I am scheduled for round three on July 5th. In previous bloggings, I have remarked on some of the physical aspects of this journey. This time, I am going to talk a little bit about steroids and their apparent physical, chemical, and mental effects on me.
First, you may recall that I am participating in a second clinical trial related to anti-emetics. As I understand it, the pharmacy team is trying out a new combination of drugs to control the nausea and vomiting associated with FOLFOX. As a participant in that study, I am taking palonosetron by IV 30 minutes prior to the chemo, as well as the pill forms of aprepitant and dexamethasone by mouth that morning. I continue to take the pills on day two and three (for the aprepitant) and days two, three and four for the dexamethasone. The IV-delivered palonosteron is relatively new, but it works by blocking the 5-HT3 receptors that initiate the vomiting reflex. Aprepitant, then, augments the antiemetic activity of the 5-HT3-receptor antagonist palonosetron and the synthetic adenocortical steroid dexamethasone, and it is a selective high-affinity antagonist of human substance P/neurokinin 1 (NK1) receptors. I think that means that "it helps to inhibit the central nervous system response to the chemo" (which is to evict the nasty whatever out of your body by vomiting or diarrhea-ing) by interrupting a neural signal at or near the brain. The dexamethasone supports the effectiveness of the palonosetron. In the end, it's all about inhibiting the vomit reflex that the introduction of a chemo-soup into my bloodstream initiates. So far, the anti-emetic trial's combination of drugs has been very effective. No vomiting, no dry heaves.
Ahhh. But there are side effects to these "helper" drugs, to be sure. I have already mentioned the hiccups (apparently this is a known, but "less likely", side effect of the aprepitant), weakness, loss of appetite, and constipation. In fact, it seems that both the chemo drugs and the anti-emetics team up to really constipate a person, or at least this person. I have also had pretty severe heartburn, apparently caused by the aprepitant. In an attempt to counter these physical side effects, I prophylactically take Prilosec OTC (for the heartburn) and Dulcolax and Sennokot-S for the constipation... beginning two days before the chemo and then continuing for four days after. I also drink a ton of water every day. As a bonus side effect, the dexamethasone seems to make me somewhat hyperactive while I am on it. Imagine that, a hyperactive, constipated, underweight Ed. What a mess!
Then, to top off the proverbial cake, there are additional non-physical side effects that we think are also related to the dexamethasone (the steroid). Of the many side effects associated with steroid use, mood swings and aggression seem to be pretty common. We have noticed that I get a little moody when I am taking the post-chemo pills, and that I am a little more assertive than normal in my conversations with folks. And I have had some strange dreams... Now that might not seem so odd to many people (having strange dreams, that is), but for me the real odd part is that I remember them. And vividly. Which is not normally the case with me. The latest one was an odd combination of our neighbors going on vacation, strangers moving in to their house, our garage being completely (but neatly) disassembled, telephones dialing numbers randomly, and me being unable to do anything constructive about any of it. My local dream-interpreter thinks that this is OBVIOUSLY about my feelings of loss of control around my cancer. Ya think?!??! :)
I will be checking in with the study PI this Thursday... about this stuff as well as the pharmacokinetics of the drug accumulation/elimination cycling. And if anything I said here is dead wrong, I will correct it in a later blog post. Have a Happy 4th of July, for all you Americans that read this, and Happy Birthday to Canada too.
First, you may recall that I am participating in a second clinical trial related to anti-emetics. As I understand it, the pharmacy team is trying out a new combination of drugs to control the nausea and vomiting associated with FOLFOX. As a participant in that study, I am taking palonosetron by IV 30 minutes prior to the chemo, as well as the pill forms of aprepitant and dexamethasone by mouth that morning. I continue to take the pills on day two and three (for the aprepitant) and days two, three and four for the dexamethasone. The IV-delivered palonosteron is relatively new, but it works by blocking the 5-HT3 receptors that initiate the vomiting reflex. Aprepitant, then, augments the antiemetic activity of the 5-HT3-receptor antagonist palonosetron and the synthetic adenocortical steroid dexamethasone, and it is a selective high-affinity antagonist of human substance P/neurokinin 1 (NK1) receptors. I think that means that "it helps to inhibit the central nervous system response to the chemo" (which is to evict the nasty whatever out of your body by vomiting or diarrhea-ing) by interrupting a neural signal at or near the brain. The dexamethasone supports the effectiveness of the palonosetron. In the end, it's all about inhibiting the vomit reflex that the introduction of a chemo-soup into my bloodstream initiates. So far, the anti-emetic trial's combination of drugs has been very effective. No vomiting, no dry heaves.
Ahhh. But there are side effects to these "helper" drugs, to be sure. I have already mentioned the hiccups (apparently this is a known, but "less likely", side effect of the aprepitant), weakness, loss of appetite, and constipation. In fact, it seems that both the chemo drugs and the anti-emetics team up to really constipate a person, or at least this person. I have also had pretty severe heartburn, apparently caused by the aprepitant. In an attempt to counter these physical side effects, I prophylactically take Prilosec OTC (for the heartburn) and Dulcolax and Sennokot-S for the constipation... beginning two days before the chemo and then continuing for four days after. I also drink a ton of water every day. As a bonus side effect, the dexamethasone seems to make me somewhat hyperactive while I am on it. Imagine that, a hyperactive, constipated, underweight Ed. What a mess!
Then, to top off the proverbial cake, there are additional non-physical side effects that we think are also related to the dexamethasone (the steroid). Of the many side effects associated with steroid use, mood swings and aggression seem to be pretty common. We have noticed that I get a little moody when I am taking the post-chemo pills, and that I am a little more assertive than normal in my conversations with folks. And I have had some strange dreams... Now that might not seem so odd to many people (having strange dreams, that is), but for me the real odd part is that I remember them. And vividly. Which is not normally the case with me. The latest one was an odd combination of our neighbors going on vacation, strangers moving in to their house, our garage being completely (but neatly) disassembled, telephones dialing numbers randomly, and me being unable to do anything constructive about any of it. My local dream-interpreter thinks that this is OBVIOUSLY about my feelings of loss of control around my cancer. Ya think?!??! :)
I will be checking in with the study PI this Thursday... about this stuff as well as the pharmacokinetics of the drug accumulation/elimination cycling. And if anything I said here is dead wrong, I will correct it in a later blog post. Have a Happy 4th of July, for all you Americans that read this, and Happy Birthday to Canada too.
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