Weakness and fatigue are facts of life when you are enduring chemotherapy. But to be honest, until recently I really hadn't given much thought to the notion of "weakness" in my life. Sure, I know that I have a small appetite for M&Ms, especially when they are available in the 3-pound bag. And there is that small penchant for dark beers and single-malt scotch. OK, and I'll admit to wondering (every so often) if I'll EVER see the kind of athletic shape that let me play volleyball tournaments for three consecutive days way-back-when, or backpack through the North Cascades for weeks at a time, or even climb mountains. But this chemotherapy stuff has really brought me up short when it comes to this "weakness" thing.
Weakness is wondering if you shouldn't just sit down right now, no matter where you happen to be. Or better yet, stay seated or reclining just a little bit longer before you get up to do that whatever-it-is task. Immediately after the chemo, but especially after I stop taking the steroids three days later, my body just completely crashes. I have found that one of those days is dedicated to sitting still and reading/napping - all day long. Of course, I manage to get around the house, but find myself on wobbly legs and with slightly shaky hands... and far more often than I ever thought I would. It is really humbling. It feels like a real victory to remain upright and engaged for the whole day. But I am confident (and it has so far been the case) that this weakness will pass each time. (As a magnificent Father's Day gift, my wife and daughter got me a very comfortable, portable lounger that allows me to recline nearly horizontally. It moves to wherever I need it - from the front porch, to the TV room, and even to friends' homes - so that I can really rest whenever I need to... and that is far more often than I would like to admit.) So far, this serious level of physical weakness seems to go away about five days after the IV.
One thing, though, about seeing physical weakness in yourself... it has made it easier for me to recognize (and support) the weakness of those around me. I am more certain than ever that this will pass and that the journey is more than worth the trouble. And even though I want to work on my strength all the time, I realize that "staying even" with my weight is a laudable goal. The muscles will recover. The flip-side of the physical weakness - mental toughness? spiritual fortitude? emotional strength? - those aspects of my world are doing just fine. And there are many mountains to climb, races to run, [fill in your favorite cliche here]... and smiles are quite strengthening, you know.
Tuesday, June 26, 2007
Thursday, June 21, 2007
Half-lives
What a wonderfully loaded title for a blog entry. There is so much that could be said about the way we live our lives in a half-awake manner until something happens that truly wakes us up. Or even about how, no matter how old we are, we feel like we are only half-way to somewhere or some-when. This blog entry, though, is about chemistry, the way our bodies deal with chemo, and the confusing "facts" that are available on the Web.
First, let me say that I have NOT checked any of the following with a pharmacist, and that I intend to do so the next time I visit my cancer clinic. And let me also say that I am not inclined to be concerned about the apparent disagreement about how long the Oxaliplatin resides in my body. I trust that my team of doctors and nurses all know what they are doing, especially since this is a clinical trial that they are trying very hard to control (dosage and production lot). OK, now that the silly disclaimers are out of the way, let's get into the math.
One website I went to indicated that the metabolized part of the oxaliplatin that is injected into my system has a half-life of 391 hours (16+ days). Being the math wiz that I am, I quickly calculated that 16+ days minus the 14 days that transpire between each treatment, leaves you with a difference of 2+ days. Ummm, and that was for half of the metabolized dose... So, over the course of twelve treatments, that residual stuff adds up to the equivalent of a dose and a third. In other words, that means that immediately after the 12th treatment I would have approximately 2.3 dose equivalents in my system. And that dose equivalent would take something like 68 days to get down to a 0.3 dose equivalent in my system. Hmmm. Maybe I'll be in a normal state by Christmas, if this website's information is correct. That would be very nice timing, but quite a bit longer than I thought would be the case!
But, then I went to another website (the Eloxatin site, which is the official drug website), and it says that the oxaliplatin has a very short span in system, and that after just 5 days 54% of the drug has been eliminated "through renal activity." Can I hear a "whoop whoop" for the kidneys! This, of course, is a much more encouraging mathematical problem, and might lead a patient to conclude that there is little or no accumulated concentration in their system. However, that doesn't seem to mesh well with the anecdotal stories you hear and read that say that the first half of the treatment regimen is relatively easy to tolerate, but the second half seems harder. What to conclude, what to think, what to do???
Well, in the first place, I ought to talk to my doctor and pharmacist about this. They will certainly be better sources than the Internet. Second, I should be careful extrapolating into my future based on averages. Third, well, I just need to relax. As the lovely wife has pointed out for two days running now, I am hyped up on a steroid and an anti-emetic to head off the nausea and heaving that usually accompanies the introduction of the FOLFOX combination into healthy gastro-intestinal systems. And finally, the reason for all this treatment-stuff is to lengthen my own half-life. At forty-five, I would be greatly surprised if I haven't already passed that temporal milepost, but I am working under the assumption that MY half-life is much closer to 45 years than it is to 25 years.
Have a great weekend!
First, let me say that I have NOT checked any of the following with a pharmacist, and that I intend to do so the next time I visit my cancer clinic. And let me also say that I am not inclined to be concerned about the apparent disagreement about how long the Oxaliplatin resides in my body. I trust that my team of doctors and nurses all know what they are doing, especially since this is a clinical trial that they are trying very hard to control (dosage and production lot). OK, now that the silly disclaimers are out of the way, let's get into the math.
One website I went to indicated that the metabolized part of the oxaliplatin that is injected into my system has a half-life of 391 hours (16+ days). Being the math wiz that I am, I quickly calculated that 16+ days minus the 14 days that transpire between each treatment, leaves you with a difference of 2+ days. Ummm, and that was for half of the metabolized dose... So, over the course of twelve treatments, that residual stuff adds up to the equivalent of a dose and a third. In other words, that means that immediately after the 12th treatment I would have approximately 2.3 dose equivalents in my system. And that dose equivalent would take something like 68 days to get down to a 0.3 dose equivalent in my system. Hmmm. Maybe I'll be in a normal state by Christmas, if this website's information is correct. That would be very nice timing, but quite a bit longer than I thought would be the case!
But, then I went to another website (the Eloxatin site, which is the official drug website), and it says that the oxaliplatin has a very short span in system, and that after just 5 days 54% of the drug has been eliminated "through renal activity." Can I hear a "whoop whoop" for the kidneys! This, of course, is a much more encouraging mathematical problem, and might lead a patient to conclude that there is little or no accumulated concentration in their system. However, that doesn't seem to mesh well with the anecdotal stories you hear and read that say that the first half of the treatment regimen is relatively easy to tolerate, but the second half seems harder. What to conclude, what to think, what to do???
Well, in the first place, I ought to talk to my doctor and pharmacist about this. They will certainly be better sources than the Internet. Second, I should be careful extrapolating into my future based on averages. Third, well, I just need to relax. As the lovely wife has pointed out for two days running now, I am hyped up on a steroid and an anti-emetic to head off the nausea and heaving that usually accompanies the introduction of the FOLFOX combination into healthy gastro-intestinal systems. And finally, the reason for all this treatment-stuff is to lengthen my own half-life. At forty-five, I would be greatly surprised if I haven't already passed that temporal milepost, but I am working under the assumption that MY half-life is much closer to 45 years than it is to 25 years.
Have a great weekend!
Tuesday, June 19, 2007
Senses
I believe that one of my previous posts, perhaps the brief one that introduced peripheral neuropathy, touched on the notion that a cancer diagnosis and its subsequent treatments seem to heighten a person's senses. I find myself examining every sensation that I have, and all of the time. For example, I have always been a kind of "heater"... in the way that makes me want to peel off blankets at night, and wear shorts in the summertime. I easily melt when the temperatures get too hot, and humidity makes me very uncomfortable when it is coupled with heat. I am at my most comfortable when I am at the Oregon coast, walking on the beach at about 65 degrees. I would last about three days in the Gulf coast states without the modern convenience of air conditioning (not that I've spent all that much time there, mind you). Even the relatively mild humidity of East coast summers would cause me to lie still and pant for cold drinks (even the frou-frou kind!) Now, though, I find that I am always rubbing my hands together to warm my fingertips, and I still have a down comforter on the bed at night. Sheesh.
I am constantly thinking about my tummy. Through the surgeries and recovery, I have really jumbled up my insides and they are still "settling in" as to regular functioning. I think I have already mentioned that several times. But I find myself CONSTANTLY checking to see, "am I hungry or, just what is THAT feeling?" I am kind of dreading the next treatment because I now know that the chemical balancing act with regard to my bowel is about to start again. I focus a lot on keeping track of how much I drink over a day. And I read that the oxaliplatin is mainly processed by my kidneys, and has a half-life of 16 or so days... That means that the amount of drug in my system has declined to one-half the initial concentration after a little more than two weeks. I am receiving additional drugs every 14 days, though, so the concentration of oxaliplatin will gradually rise over the course of my regimen. I am reminded regularly to drink PLENTY of fluids to help move that stuff along (as they say).
This morning I awoke at 5:04am, having slept all the way through the night for the first time in weeks (I have been waking at least once a night for bathroom stuff). But a bird song announcing the sunrise wiggled its way into my brain and I could sleep no more. After that, I could hear motor vehicles driving somewhere out in our area, and then I started thinking about my day... "Got to organize my work progress for a meeting this afternoon - should I use Powerpoint, or try a simple outline?" "I should get up and make a decent breakfast for myself - pancakes today, or will that be too heavy - maybe I should stick with cereal, even though I know my appetite will crash after tomorrow. I do love the taste of maple syrup on homemade buttermilk pancakes!" And taste is another of the things that chemo is supposed to affect by making things taste metallic. Oh well.
I have read that chemotherapy can affect a person's vision - and that you should NOT go to the eye doctor to correct apparent changes in vision clarity or eye fatigue during the treatments. So far, I have not noticed any changes like this, but I am constantly aware of the possibility. I love to read, and that would be a somewhat difficult side effect for me.
But it's another beautiful day in paradise, and I am glad to be able to greet the sun with my tweeting feathered friend. Gotta remember to check the irrigation system tonight after work, and finish cleaning out the basement too, before my energy and attention turns to processing the important pharmacological soup again. Have a great day, wherever you are!
I am constantly thinking about my tummy. Through the surgeries and recovery, I have really jumbled up my insides and they are still "settling in" as to regular functioning. I think I have already mentioned that several times. But I find myself CONSTANTLY checking to see, "am I hungry or, just what is THAT feeling?" I am kind of dreading the next treatment because I now know that the chemical balancing act with regard to my bowel is about to start again. I focus a lot on keeping track of how much I drink over a day. And I read that the oxaliplatin is mainly processed by my kidneys, and has a half-life of 16 or so days... That means that the amount of drug in my system has declined to one-half the initial concentration after a little more than two weeks. I am receiving additional drugs every 14 days, though, so the concentration of oxaliplatin will gradually rise over the course of my regimen. I am reminded regularly to drink PLENTY of fluids to help move that stuff along (as they say).
This morning I awoke at 5:04am, having slept all the way through the night for the first time in weeks (I have been waking at least once a night for bathroom stuff). But a bird song announcing the sunrise wiggled its way into my brain and I could sleep no more. After that, I could hear motor vehicles driving somewhere out in our area, and then I started thinking about my day... "Got to organize my work progress for a meeting this afternoon - should I use Powerpoint, or try a simple outline?" "I should get up and make a decent breakfast for myself - pancakes today, or will that be too heavy - maybe I should stick with cereal, even though I know my appetite will crash after tomorrow. I do love the taste of maple syrup on homemade buttermilk pancakes!" And taste is another of the things that chemo is supposed to affect by making things taste metallic. Oh well.
I have read that chemotherapy can affect a person's vision - and that you should NOT go to the eye doctor to correct apparent changes in vision clarity or eye fatigue during the treatments. So far, I have not noticed any changes like this, but I am constantly aware of the possibility. I love to read, and that would be a somewhat difficult side effect for me.
But it's another beautiful day in paradise, and I am glad to be able to greet the sun with my tweeting feathered friend. Gotta remember to check the irrigation system tonight after work, and finish cleaning out the basement too, before my energy and attention turns to processing the important pharmacological soup again. Have a great day, wherever you are!
Saturday, June 16, 2007
Speaking of exercise...
... I had no idea, but it turns out that it's a good thing to be/have been a moderate drinker of alcohol prior to chemo-therapy treatment. I have no independent, scientific studies to cite, but I have heard from two different medical professionals that it is better to have an "exercised" liver when it comes to filtering out the toxin soup commonly called therapy when it comes to cancer. Most if not all of my friends know that I have long appreciated the crafted local brews of the Pacific Northwest, and some even know that I drank my way through many a beer hall and pub in Europe as a solo traveler during a wet spring back in the mid 1980s. More recently, I have become a bit more knowledgeable about red wines, especially those grown in the tradition of Burgundy right here in the Willamette Valley, thanks in no small part to the efforts and interests of my fathers-in-law. So, in a spirit of heartfelt pleasure on many levels, I want to thank everyone that ever bought me a drink, enjoyed a drink that I bought, drank with me, or taught me about a drink. My liver and kidneys are getting the workout of their lives, and apparently are more up to that task due in no small part to your efforts. :)
And for those who will object that there is some evidence that beer-drinking and barbecued cow flesh are both correlated with an increased risk for colon cancer, I only have to say - I prefer to focus on the positive aspects of my current situation (thank you VERY much). :-) Of course we should all be aware of what we are putting into our bodies, and to that end our family is now making every effort to buy organic, locally grown food and cook it ourselves. There are huge personal, social, environmental, and economic benefits to doing this, and we are trying to walk the talk on this issue.
But, I sure am looking forward to a day, not too far in the future (say, six months or so), when I can once again hoist a pint of PoleAx at the local brewpub and toast the health of my liver, kidneys, colon, and all those other important organs that live down below my mouth. And I hope that you will join me on that day... wherever you happen to be located on our lovely blue planet.
And for those who will object that there is some evidence that beer-drinking and barbecued cow flesh are both correlated with an increased risk for colon cancer, I only have to say - I prefer to focus on the positive aspects of my current situation (thank you VERY much). :-) Of course we should all be aware of what we are putting into our bodies, and to that end our family is now making every effort to buy organic, locally grown food and cook it ourselves. There are huge personal, social, environmental, and economic benefits to doing this, and we are trying to walk the talk on this issue.
But, I sure am looking forward to a day, not too far in the future (say, six months or so), when I can once again hoist a pint of PoleAx at the local brewpub and toast the health of my liver, kidneys, colon, and all those other important organs that live down below my mouth. And I hope that you will join me on that day... wherever you happen to be located on our lovely blue planet.
Friday, June 15, 2007
Small worlds
Finally, some time to write down some thoughts. All week long, I have intended to add to the blog, and all week long I have managed to run out of time (in the mornings, while rushing around getting breakfast and lunch ready before I head out the door to catch the bus to work) or energy (in the evenings, after I have put in a solid day's work for the good citizens of our fine state). And I really appreciate the feedback in the comments area and via email. I like to think that I can feel the positive energy of folks reading my words, but the truth is that I don't really know how many people choose to look at this thing. And that's OK too.
I have been thinking, though, of the scale of things in life. Like what constitutes a "big deal" as opposed to a trivial thing. Like how biochemical activity throughout my newly-skinny body can wipe out my energy without so much as a "by your leave." Like the way friends can re-energize that fatigued spirit with a simple card or a kind word. And how I am not the only person that is suffering through a difficult period in life, and that I am lucky to be who I am and where I am.
As of the last blog entry, I had had a good Monday back at work, and had had a great lunch date with a friend. Well, my energy and demeanor continued to improve each day, and my appetite returned with a vengeance. I have been feeling more and more recovered each day, and feel like I am beginning to understand how the treatment weeks will work... On the Monday of treatment week, I will start a daily dose of Prilosec OTC first thing each morning to prepare my stomach for the assault of stomach acid production/heartburn that either the chemo- or anti-emetics will encourage. On either Tuesday or Wednesday, I will also add to that a Dulcolax (stool softener/stimulant) in anticipation of the constipatory effect of the anti-emetics. Then, on Wednesday, it's off to the clinic for my dose of toxin soup. This time, I will not wait so long to encourage the functioning of a bowel that I once took so for granted. When you can't go, your world shrinks to a path from wherever you are to a commode, where you sit and hope and... well, concentrate REALLY hard (if you know what I mean)... And I will try to figure out if there is a reason for the assertive hiccups that attached themselves to my diaphragm on Thursday, Friday and Saturday last time.
I have learned that the elevator is my friend. :) As I now have a cubicle on the fourth floor of an office building, I thought that I would take the stairs for the exercise, and that this would help to strengthen my legs and torso as I recover from surgery. I also thought I would walk to work from our home, a distance of about a mile, listening to my iPod and relaxing into the day. The bus is now my friend too. I have simplified those aspects of my world in order to conserve energy for work, and for spending time with my family after work. Though a tiny aspect of my former exercise-world, these changes have made my walking-space smaller, but I value the time with my family and now have a larger social world where I see different people on the bus and elevator. And this particular "small-ness" is short-lived.
I will try to post to the blog at least weekly. Thanks for reading it!
I have been thinking, though, of the scale of things in life. Like what constitutes a "big deal" as opposed to a trivial thing. Like how biochemical activity throughout my newly-skinny body can wipe out my energy without so much as a "by your leave." Like the way friends can re-energize that fatigued spirit with a simple card or a kind word. And how I am not the only person that is suffering through a difficult period in life, and that I am lucky to be who I am and where I am.
As of the last blog entry, I had had a good Monday back at work, and had had a great lunch date with a friend. Well, my energy and demeanor continued to improve each day, and my appetite returned with a vengeance. I have been feeling more and more recovered each day, and feel like I am beginning to understand how the treatment weeks will work... On the Monday of treatment week, I will start a daily dose of Prilosec OTC first thing each morning to prepare my stomach for the assault of stomach acid production/heartburn that either the chemo- or anti-emetics will encourage. On either Tuesday or Wednesday, I will also add to that a Dulcolax (stool softener/stimulant) in anticipation of the constipatory effect of the anti-emetics. Then, on Wednesday, it's off to the clinic for my dose of toxin soup. This time, I will not wait so long to encourage the functioning of a bowel that I once took so for granted. When you can't go, your world shrinks to a path from wherever you are to a commode, where you sit and hope and... well, concentrate REALLY hard (if you know what I mean)... And I will try to figure out if there is a reason for the assertive hiccups that attached themselves to my diaphragm on Thursday, Friday and Saturday last time.
I have learned that the elevator is my friend. :) As I now have a cubicle on the fourth floor of an office building, I thought that I would take the stairs for the exercise, and that this would help to strengthen my legs and torso as I recover from surgery. I also thought I would walk to work from our home, a distance of about a mile, listening to my iPod and relaxing into the day. The bus is now my friend too. I have simplified those aspects of my world in order to conserve energy for work, and for spending time with my family after work. Though a tiny aspect of my former exercise-world, these changes have made my walking-space smaller, but I value the time with my family and now have a larger social world where I see different people on the bus and elevator. And this particular "small-ness" is short-lived.
I will try to post to the blog at least weekly. Thanks for reading it!
Monday, June 11, 2007
Back to work
Perhaps the hiking on Saturday was the issue, or maybe it was just the dreary grey weather, but I was hard put yesterday to do anything but rest and bundle up. I reclined, covered in blankets and a dressed in a wool sweater that my Mom knit for me years ago, and concentrated on getting warm and resting. For the first time in a very long time, I managed to watch an entire Mariners' game on TV in the afternoon, and they even won, 4-3. Yay.
The overwhelming fatigue and general feeling of coldness finally passed, and I managed to get a decent night's sleep last night. Somehow, it seems amazing and far-off that just a few short weeks ago I would climb out of bed each day before 6am and walk for 45 minutes before my day actually "began." Now I am happy to get out the door in time to catch the bus to work at 7:30. (Just in case anyone out there in webworld thinks otherwise, my "fashion-challenged" status has not changed in any noticeable way over the years, and it still takes a major effort for me to match my tie to the rest of the outfit. My wife tolerates, in a most good-natured way, this missing aspect of my education.) :)
Back to today, though... After a couple of meetings this morning, I had a very enjoyable lunch with a close friend and colleague. We had some catching up to do, and she wanted to know, "how was I doing?" This is sometimes a difficult question to handle as a chemo-patient... but I know her well enough to feel like she meant it, and we had a far-ranging and sublimely connecting conversation about the surreality of living in CancerWorld. And perhaps more importantly, we talked about the practiced distance we insert between the sensory "reality" that we each experience every day and the worlds of our hopes and dreams. I found myself dragging the conversation all over the place, tripping slowly over the social constructions of past societies (just where are those Greek and Norse gods these days, anyhow) and briskly swatting at the inter-generational and societal inequities of modern medicine (the cost of cancer treatment is truly a phenomenal amount of money, especially when millions of children are without basic care in our country). And all in the breadth of an hour's lunch - beef stew with sun-dried tomato hummus, with a tall glass of tap water.
The overwhelming fatigue and general feeling of coldness finally passed, and I managed to get a decent night's sleep last night. Somehow, it seems amazing and far-off that just a few short weeks ago I would climb out of bed each day before 6am and walk for 45 minutes before my day actually "began." Now I am happy to get out the door in time to catch the bus to work at 7:30. (Just in case anyone out there in webworld thinks otherwise, my "fashion-challenged" status has not changed in any noticeable way over the years, and it still takes a major effort for me to match my tie to the rest of the outfit. My wife tolerates, in a most good-natured way, this missing aspect of my education.) :)
Back to today, though... After a couple of meetings this morning, I had a very enjoyable lunch with a close friend and colleague. We had some catching up to do, and she wanted to know, "how was I doing?" This is sometimes a difficult question to handle as a chemo-patient... but I know her well enough to feel like she meant it, and we had a far-ranging and sublimely connecting conversation about the surreality of living in CancerWorld. And perhaps more importantly, we talked about the practiced distance we insert between the sensory "reality" that we each experience every day and the worlds of our hopes and dreams. I found myself dragging the conversation all over the place, tripping slowly over the social constructions of past societies (just where are those Greek and Norse gods these days, anyhow) and briskly swatting at the inter-generational and societal inequities of modern medicine (the cost of cancer treatment is truly a phenomenal amount of money, especially when millions of children are without basic care in our country). And all in the breadth of an hour's lunch - beef stew with sun-dried tomato hummus, with a tall glass of tap water.
Saturday, June 9, 2007
Tiredness
Well,well, well. What to blog about today? I took my daughter and one of her friends on a short (3-mile) hike in the foothills near town, hiking behind two separate waterfalls and down along the creek... It sprinkled here and there, and the walk outside felt good. That hike always reminds me of my youth, cruising along throughout the North Cascades and Olympic Mountains of Washington state. I find that I can still name some of the easy plants (the common ferns - sword and bracken, Oregon grape, salal, etc.) but stumble mightily over all the pretty little flowers.
When I was in Boy Scouts, back in the 1970s, I had somehow convinced myself that I could survive in the mountains in the event of a nuclear holocaust. I had my pack ready with my "10 essentials," and felt like I had trained and practiced survival enough - we even had a "survival" campout when I was in eighth grade where we had to live out of one of these little canned survival kits for a WHOLE WEEKEND. I was set. And then, later, in college there was that movie "The Day After" that we were all supposed to watch as a "family" back in 1983, and it was moving and smarmy, and made me think that you should try to get to Ground Zero rather than to try to survive the initial chaos. [Added later... upon reflection, I don't want folks to think of the bleakness of these two juxtaposed notions. I am thinking more along the lines of "I can handle this whole thing by myself" versus "jumping in and going all-the-way with treatment," rather than just throwing in the proverbial towel and giving up.]
Cancer World is kind of like jumping between these two memories. In one frame, I am in control and have a plan (though simple and ultimately very naive!). And then in the next frame I am disconnected from everything. Maybe it's not so quick as frame-to-frame, but you get the idea. Today, after that wonderful hike, I was so exhausted! I managed to get us all home safely (a short drive) before I literally collapsed into bed and slept for 2+ hours. Maybe it's just my body dealing with the initial chemo-therapeutic attack on all the fast-growing cells in my body? Maybe it's just the cumulative fatigue of major abdominal surgery, followed by a small bowel obstruction and a surgical procedure to insert my central venous catheter and starting a new, challenging job. Or maybe, it's just a good time hiking in the woods and working out some atrophied muscles.
They're back, those infamous and annoying hiccups. Maybe this is a good time to sign off. Peace.
When I was in Boy Scouts, back in the 1970s, I had somehow convinced myself that I could survive in the mountains in the event of a nuclear holocaust. I had my pack ready with my "10 essentials," and felt like I had trained and practiced survival enough - we even had a "survival" campout when I was in eighth grade where we had to live out of one of these little canned survival kits for a WHOLE WEEKEND. I was set. And then, later, in college there was that movie "The Day After" that we were all supposed to watch as a "family" back in 1983, and it was moving and smarmy, and made me think that you should try to get to Ground Zero rather than to try to survive the initial chaos. [Added later... upon reflection, I don't want folks to think of the bleakness of these two juxtaposed notions. I am thinking more along the lines of "I can handle this whole thing by myself" versus "jumping in and going all-the-way with treatment," rather than just throwing in the proverbial towel and giving up.]
Cancer World is kind of like jumping between these two memories. In one frame, I am in control and have a plan (though simple and ultimately very naive!). And then in the next frame I am disconnected from everything. Maybe it's not so quick as frame-to-frame, but you get the idea. Today, after that wonderful hike, I was so exhausted! I managed to get us all home safely (a short drive) before I literally collapsed into bed and slept for 2+ hours. Maybe it's just my body dealing with the initial chemo-therapeutic attack on all the fast-growing cells in my body? Maybe it's just the cumulative fatigue of major abdominal surgery, followed by a small bowel obstruction and a surgical procedure to insert my central venous catheter and starting a new, challenging job.
They're back, those infamous and annoying hiccups. Maybe this is a good time to sign off. Peace.
Friday, June 8, 2007
Peripheral neuropathy
There's a thousand-dollar pair of words, wouldn't you say? Doctors throw words like these around like they're common enough, but I had to look them up (twice) on the Internet before I really thought I understood them. Oh, and having experienced this condition a few times now, I really do understand the term. So, let's have a quick vocab lesson before we get into the proverbial "meat" of this post, shall we?
From MedlinePlus (http://www.nlm.nih.gov/medlineplus/mplusdictionary.html) we have this: "[noun] a disease or degenerative state (as polyneuropathy) of the peripheral nerves in which motor, sensory, or vasomotor nerve fibers may be affected and which is marked by muscle weakness and atrophy, pain, and numbness." Chock full of additional big words and concepts... so let's begin with the basics. In one's nervous system, there are the central nerves (spinal column and it's profound linkages to vital organs in your abdomen, but including the brain, Joel) and the peripheral nerves (uh, the rest of the body - especially the skin and arms/legs). Neuropathy, then, would be the "disease or degenerative state" described above, where motor (moving around), sensory (feeling, smelling, tasting, hearing, seeing, and whatever your sixth sense happens to be today), and vasomotor (uhhhh, the constricting of blood vessels to move your blood in the proper direction) nerve fibers may be affected, and which is marked by muscle weakness and atrophy (loss of muscle mass and strength), pain, and numbness. Chemo-therapy with the drugs I am on has a side effect of inducing short-term peripheral neuropathy.
So, inquiring minds are dying to know, "what peripheral neuropathy are YOU experiencing today, Ed?" I am glad you asked. Today, so far, has been very mild in the PN (that's gonna be my shorthand for peripheral neuropathy for the rest of this post) department. Just a little bit of hiccuping and dry belching. But, yesterday was pretty fun in the PN department. First off, I awoke with spiky, tingling in the fingertip of my pinky on my right hand. Made typing the "p", double-quote, and question mark key a little exciting, but that wore off after I had something to eat and warmed up my hands a bit on the walk to work. The MOST exciting PN symptom, though, was opening my mouth to take a bite of scrambled eggs and feeling like my jaw muscles were cramping (both sides, severely, at the joint connecting my upper and lower jaws). YOUCH! It went away after a minute or so, but what a surprise. And it only happened that once yesterday - though I can't WAIT to try again today. :) The last PN is regular, extended bouts of hiccups... yesterday I had five or six rounds, each lasting from five to twenty minutes, and all very loud and distracting. But sure better than any retching (dry or wet).
When I was in the hospital for my abdominal resection, I had some PN related to the epidural (completely numb left leg, for example), but this stuff is both smaller and bigger at the same time. I can function with my current PN, whereas a numb leg, say, prevents walking around - which I was being encouraged to do so that I wouldn't get blood clots in my legs. But now I find myself wondering about every single little signal from every part of my body. It can make you a little nutty (or nuttier, for those who know me...) constantly thinking about things like this. I'm glad I have other distractions.
From MedlinePlus (http://www.nlm.nih.gov/medlineplus/mplusdictionary.html) we have this: "[noun] a disease or degenerative state (as polyneuropathy) of the peripheral nerves in which motor, sensory, or vasomotor nerve fibers may be affected and which is marked by muscle weakness and atrophy, pain, and numbness." Chock full of additional big words and concepts... so let's begin with the basics. In one's nervous system, there are the central nerves (spinal column and it's profound linkages to vital organs in your abdomen, but including the brain, Joel) and the peripheral nerves (uh, the rest of the body - especially the skin and arms/legs). Neuropathy, then, would be the "disease or degenerative state" described above, where motor (moving around), sensory (feeling, smelling, tasting, hearing, seeing, and whatever your sixth sense happens to be today), and vasomotor (uhhhh, the constricting of blood vessels to move your blood in the proper direction) nerve fibers may be affected, and which is marked by muscle weakness and atrophy (loss of muscle mass and strength), pain, and numbness. Chemo-therapy with the drugs I am on has a side effect of inducing short-term peripheral neuropathy.
So, inquiring minds are dying to know, "what peripheral neuropathy are YOU experiencing today, Ed?" I am glad you asked. Today, so far, has been very mild in the PN (that's gonna be my shorthand for peripheral neuropathy for the rest of this post) department. Just a little bit of hiccuping and dry belching. But, yesterday was pretty fun in the PN department. First off, I awoke with spiky, tingling in the fingertip of my pinky on my right hand. Made typing the "p", double-quote, and question mark key a little exciting, but that wore off after I had something to eat and warmed up my hands a bit on the walk to work. The MOST exciting PN symptom, though, was opening my mouth to take a bite of scrambled eggs and feeling like my jaw muscles were cramping (both sides, severely, at the joint connecting my upper and lower jaws). YOUCH! It went away after a minute or so, but what a surprise. And it only happened that once yesterday - though I can't WAIT to try again today. :) The last PN is regular, extended bouts of hiccups... yesterday I had five or six rounds, each lasting from five to twenty minutes, and all very loud and distracting. But sure better than any retching (dry or wet).
When I was in the hospital for my abdominal resection, I had some PN related to the epidural (completely numb left leg, for example), but this stuff is both smaller and bigger at the same time. I can function with my current PN, whereas a numb leg, say, prevents walking around - which I was being encouraged to do so that I wouldn't get blood clots in my legs. But now I find myself wondering about every single little signal from every part of my body. It can make you a little nutty (or nuttier, for those who know me...) constantly thinking about things like this. I'm glad I have other distractions.
Wednesday, June 6, 2007
A Lonnnngggggg Day...
Well, it's finally winding down - the first day of chemo-therapy is nearly finished. I am sitting in my "office" (the brown recliner in the front room), listening to the 5-FU pump cycle through its 3 ml/hour song (whzzzsht) and trying to relax enough to try some sleeping. We are already wondering if the pump sound, once every couple of minutes, will allow a decent night's sleep for anyone in the master bedroom... if it keeps the cat awake, then no one will sleep!
We started out by sending the darling daughter over to a friend's house so we could drive up to the cancer clinic. Traffic is unpredictable, and we wanted to be on-time the first day. We ended up arriving five minutes early, after stopping for gas, but it didn't really matter. They "checked" me in, but we didn't get called back to the chemotherapy area until after 9:30. I was weighed in - 166 lbs! - and then taken to my personal Naugahyde recliner for the duration of the day. The PowerPort was flushed with a saline solution, and then we withdrew a small amount of blood through it (about a teaspoon) for the blood tests. The doctors/nurses are particularly interested in the physical counts (white blood cells, red blood cells, platelets, hemoglobin, etc.), which measure my susceptibility to anemia, neutropenia, and excessive bleeding, as well as the components that indicate proper liver and kidney functions and glucose levels.
Once those data are declared to be within safe parameters for a person my size and weight, they "order" the drugs to be prepared. Ordering means that they fax the prescription across the room to the clinic pharmacy. :) Have they heard of paper reduction? Whatever. Then my prescription is placed in the queue to be mixed, and I am given some anti-emetic/anti-nausea meds both orally and intravenously. Those take an hour to take effect, so the timing seems OK. Then the paperwork arrives! I spent at least an hour filling out surveys related to my medical history (as well as my immediate family's history), my diet (for the anti-emetic clinical trial that I am in), and one other one that I didn't know about (but it was a one-pager, and it's all about the science, right?) And the staff were all very helpful and friendly - but that means plenty introduction conversation of the "hi, nice to meet you" variety.
The chemo- drugs didn't all arrive until nearly 1pm. !!! We finally got them dripping by 1:20pm, after a second nurse had to come by to verify (along with my main nurse for the day): (a) who the patient is - by asking me my name and birthdate and comparing it against my wristband, (b) the prescription - by looking at the original form that was faxed to the pharmacy, and (c) the drugs themselves - by comparing the IV bag labels to the prescription. It is a good safety policy... but it adds time as nurses aren't twiddling their collective thumbs in the clinic, you know. :)
Drip... drip... drip... and two plus hours slowly melt away. We got hungry and got sandwiches from the cafeteria (not bad, really). We drank cran-apple juice and water, and then I would wander to the bathroom every 45 minutes. Between the drinks to quench my thirst, and the liter-plus volume of fluids dripping into me, I kept my bladder plenty busy. The nurse from the portable pump service taught us all about the pump that I now wear for 48 hours. And after the Oxaliplatin and Leucovorin were finished, I got another 20 minutes of anti-emetic-helping glucose/saline IV. We finally left the clinic at 4:30pm for the drive home... arriving there at 5:50pm. 10 hours and 20 minutes after we left. They think that we will only need 5 hours in the clinic next time (which could mean that the day would only be 7.5 to 8 hours long). Yippee.
Next time I hope to remember to bring cards and backgammon. I was able to work for a couple of hours, but the interruptions were too often to get on a roll. There is also a lot of beeping and conversation in the clinic's sound-space, which I found to be hard to ignore today. Maybe I'll get better at that in the future? And there are so many other topics that I feel compelled, and ready, to write about... but now I go to sleep. :)
We started out by sending the darling daughter over to a friend's house so we could drive up to the cancer clinic. Traffic is unpredictable, and we wanted to be on-time the first day. We ended up arriving five minutes early, after stopping for gas, but it didn't really matter. They "checked" me in, but we didn't get called back to the chemotherapy area until after 9:30. I was weighed in - 166 lbs! - and then taken to my personal Naugahyde recliner for the duration of the day. The PowerPort was flushed with a saline solution, and then we withdrew a small amount of blood through it (about a teaspoon) for the blood tests. The doctors/nurses are particularly interested in the physical counts (white blood cells, red blood cells, platelets, hemoglobin, etc.), which measure my susceptibility to anemia, neutropenia, and excessive bleeding, as well as the components that indicate proper liver and kidney functions and glucose levels.
Once those data are declared to be within safe parameters for a person my size and weight, they "order" the drugs to be prepared. Ordering means that they fax the prescription across the room to the clinic pharmacy. :) Have they heard of paper reduction? Whatever. Then my prescription is placed in the queue to be mixed, and I am given some anti-emetic/anti-nausea meds both orally and intravenously. Those take an hour to take effect, so the timing seems OK. Then the paperwork arrives! I spent at least an hour filling out surveys related to my medical history (as well as my immediate family's history), my diet (for the anti-emetic clinical trial that I am in), and one other one that I didn't know about (but it was a one-pager, and it's all about the science, right?) And the staff were all very helpful and friendly - but that means plenty introduction conversation of the "hi, nice to meet you" variety.
The chemo- drugs didn't all arrive until nearly 1pm. !!! We finally got them dripping by 1:20pm, after a second nurse had to come by to verify (along with my main nurse for the day): (a) who the patient is - by asking me my name and birthdate and comparing it against my wristband, (b) the prescription - by looking at the original form that was faxed to the pharmacy, and (c) the drugs themselves - by comparing the IV bag labels to the prescription. It is a good safety policy... but it adds time as nurses aren't twiddling their collective thumbs in the clinic, you know. :)
Drip... drip... drip... and two plus hours slowly melt away. We got hungry and got sandwiches from the cafeteria (not bad, really). We drank cran-apple juice and water, and then I would wander to the bathroom every 45 minutes. Between the drinks to quench my thirst, and the liter-plus volume of fluids dripping into me, I kept my bladder plenty busy. The nurse from the portable pump service taught us all about the pump that I now wear for 48 hours. And after the Oxaliplatin and Leucovorin were finished, I got another 20 minutes of anti-emetic-helping glucose/saline IV. We finally left the clinic at 4:30pm for the drive home... arriving there at 5:50pm. 10 hours and 20 minutes after we left. They think that we will only need 5 hours in the clinic next time (which could mean that the day would only be 7.5 to 8 hours long). Yippee.
Next time I hope to remember to bring cards and backgammon. I was able to work for a couple of hours, but the interruptions were too often to get on a roll. There is also a lot of beeping and conversation in the clinic's sound-space, which I found to be hard to ignore today. Maybe I'll get better at that in the future? And there are so many other topics that I feel compelled, and ready, to write about... but now I go to sleep. :)
Tuesday, June 5, 2007
The big day
OK, so tomorrow is it. I head to the cancer clinic and learn the ropes of my existence for the next six months, and come home hooked up to a little 5-FU pump for two more days. As I understand it, I first get weighed, poked and prodded - this to be sure they have a baseline for my reaction(s) to the treatment and simultaneously to be sure that by blood chemistry and biology is in good enough shape to withstand the coming chemical storm (properly balanced electrolytes, sufficient red and white blood cells and platelets). I am told that they can (and do) adjust the dosages for those of us too biochemically unprepared for that onslaught. More on that as it happens...
So many people have been so kind to me and my family over the last several weeks. I really don't know how to describe (or even if I can describe) what that feels like, but it seems a worthy task to pursue. So here goes...
I feel safe - I have plenty of distraction, should I want it, while I also have enough space and time to be alone with myself. I do not feel overly stressed about much of anything. I relish the challenging work ahead of me - both physically and professionally - but I am also happy with where I am right now. It is almost funny to say, but facing the reality of "end times" and the "wrapping up" thoughts/tasks that we all think are so far in our future, has not diminished the quality of my present times. In fact, I feel like the "now" is enhanced. Even when I am feeling a little frustrated about the lack of completion on my basement remodel (it's sure hard to work on the ceiling mud when you just had abdominal surgery and then another surgery to install a port under your skin above your right pectoral muscle), or that my daughter simply is not ready to go to sleep yet (even after stories, snuggle time, and multiple trips to the bathroom and to ask "important" questions), I know that each of these moments is worthy of remembering, of cherishing. All of these moments pass so quickly from our senses, and can be jumbled or forgotten. So I feel an almost Buddha-ic (is that a word?) peace - and strive to live in those moments.
I sure could have done a lot worse in life... and am thankful for the chance to blog about my luck. :) I don't know how I will feel after the chemo, so don't be surprised if the blog is unattended for a day or so. But hang in there, I promise I'll be back.
So many people have been so kind to me and my family over the last several weeks. I really don't know how to describe (or even if I can describe) what that feels like, but it seems a worthy task to pursue. So here goes...
I feel safe - I have plenty of distraction, should I want it, while I also have enough space and time to be alone with myself. I do not feel overly stressed about much of anything. I relish the challenging work ahead of me - both physically and professionally - but I am also happy with where I am right now. It is almost funny to say, but facing the reality of "end times" and the "wrapping up" thoughts/tasks that we all think are so far in our future, has not diminished the quality of my present times. In fact, I feel like the "now" is enhanced. Even when I am feeling a little frustrated about the lack of completion on my basement remodel (it's sure hard to work on the ceiling mud when you just had abdominal surgery and then another surgery to install a port under your skin above your right pectoral muscle), or that my daughter simply is not ready to go to sleep yet (even after stories, snuggle time, and multiple trips to the bathroom and to ask "important" questions), I know that each of these moments is worthy of remembering, of cherishing. All of these moments pass so quickly from our senses, and can be jumbled or forgotten. So I feel an almost Buddha-ic (is that a word?) peace - and strive to live in those moments.
I sure could have done a lot worse in life... and am thankful for the chance to blog about my luck. :) I don't know how I will feel after the chemo, so don't be surprised if the blog is unattended for a day or so. But hang in there, I promise I'll be back.
Blogging (again)...
I had to add a few more people to the mass-emailing lists, and thought I would send out another link to the weblog that I have created for this part of my life-journey. You just point your web browser to this URL (salemor.blogspot.com) and you will go to the blog page. It has several features, including the ability for folks to look back through the archives (to see what I have posted earlier) and to leave comments/messages for me (and all of my friends/family and the whole Internet-world to read and cherish).
There are other advantages as well. I can post stuff as often as I like without feeling the slightest guilt about filling up folks' email boxes. Folks can either email me directly OR they can post to the comments section of the blog... and you can see whatever everyone else has written there. Folks beyond my "known circle" can see and learn about the inner workings of colon cancer through my particular "lens," so to speak. I can practice using a different spell-checker. :) And I can moderate the postings to remove stuff if I have to.
So, in order to see the blog, go to the URL mentioned above. In order to see the comments at the blog itself, click on the "# comments" below each day's title. For example, today's title is "Blogging (again)" and there will be a link below it with a number and then the word "comments" that will appear below it. Just click on that and the comments will appear (unless it says "0 comments," which means you get to be first that day!) You can post with your blog name if you want to sign in, or post anonymously. You will have to type in a security word (it's in squiggly type so a human being must actually read it and type it in - this is to prevent spammers from auto-detecting and posting to blogs). If you don't have a blogging account, just click on the anonymous option before posting. And welcome to the world of web-logging!
There are other advantages as well. I can post stuff as often as I like without feeling the slightest guilt about filling up folks' email boxes. Folks can either email me directly OR they can post to the comments section of the blog... and you can see whatever everyone else has written there. Folks beyond my "known circle" can see and learn about the inner workings of colon cancer through my particular "lens," so to speak. I can practice using a different spell-checker. :) And I can moderate the postings to remove stuff if I have to.
So, in order to see the blog, go to the URL mentioned above. In order to see the comments at the blog itself, click on the "# comments" below each day's title. For example, today's title is "Blogging (again)" and there will be a link below it with a number and then the word "comments" that will appear below it. Just click on that and the comments will appear (unless it says "0 comments," which means you get to be first that day!) You can post with your blog name if you want to sign in, or post anonymously. You will have to type in a security word (it's in squiggly type so a human being must actually read it and type it in - this is to prevent spammers from auto-detecting and posting to blogs). If you don't have a blogging account, just click on the anonymous option before posting. And welcome to the world of web-logging!
Monday, June 4, 2007
Anticipation
Anticipating the "next thing" has really turned out to be the most difficult part of this journey. I feel like there is no limit to the number of "thought moments" between events... first we have the symptom (some blood in the toilet after a bowel movement - not a lot, but not expected either). Is it a big deal? Let's wait to see what happens the next time... Yup, there it is again. Hemorrhoids? Probably... Hmmm, should I get that confirmed, or just get some OTC medication to get back to normal. I don't know... OK, fine, make an appointment with the family doctor and get this checked out. It's not an emergency, so, sure, I can wait 'til next week for an appointment, no problem. Oh, there is a small hemorrhoid there, but it isn't bleeding and doesn't look bad. Nothing that I can feel... Then I mentioned a family history of polyps - both on my Mom and Dad's sides. OK - I'll get a colonoscopy... thanks for the referral! Again, weeks go by in real time, but I am thinking about the exam constantly. Two days of slow starvation and a couple of phos-phosphosodas later, the exam finds a single sessile polyp about 15 cm "up" in my colon/rectum (more on the difference here in later posts, I'm sure). Now we need to figure out if it is benign or malignant - should know in a day or so... And all before anything related to "cancer" is even discussed. [Unsolicited advice here... GET A COLONOSCOPY! If your family has had any history of colon cancer (metastatic or otherwise) or polypectomies, you should get a screening colonoscopy when you are ten years younger than they were at their diagnosis. For example, if my Dad had polyps detected and removed at age 50, which is the standard age for doctors to recommend screening colonoscopies, then I should have gotten my first colonoscopy at age 40. Early detection SIGNIFICANTLY improves your treatment options and chances of complete cure/long-term survival.]
An eternity of waiting over the course of several weeks. Our minds are incredible organs. And with the support of friends and family, I have managed to survive the eternal waiting fairly well. It just feels like you can never really get away from thinking about "the next thing"... And in only two days the chemo-therapy begins.
An eternity of waiting over the course of several weeks. Our minds are incredible organs. And with the support of friends and family, I have managed to survive the eternal waiting fairly well. It just feels like you can never really get away from thinking about "the next thing"... And in only two days the chemo-therapy begins.
Sunday, June 3, 2007
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