The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Saturday, September 27, 2008

Where the heck have you been?

Excellent question. Be prepared for the lamest of answers, but I have found busy-ness to be a welcome (though overwhelming) change from cancer-dom. Cancer world is a place where you focus most of your energy inward - self-examination of mental and physical states takes one hell of a lot of energy. I now find that those inward-oriented "looks" are both simpler and not as important to my days (and nights). The sleeplessness of chemicals and worry have been replaced by the heavy sleep of exhaustion after a hard day's work and play.

I ride my bike a lot. I work hard (both at my paid job and at home tasks). Too many things are on my plate, but I rather enjoy a full-to-overflowing plate much more than the one that looks picked over with only bits of salad and potato left. I finally succumbed to Facebook (having been pushed into LinkedIn by a colleague and then goaded by my wife to "get with it"). I have enjoyed many a glass of beer or bottle of wine with my friends. I am enjoying the living of my life.

But the blog suffers. And even the most deicated blog readers slowly drift away as a result of my inattention. Cancer survivorship is a heavy responsibility - for family, for friends, for those whose journey is just beginning - but I have been giving myself room to distance myself from the 24/7 mental and physical work that chemotherapy is. Just ask anyone that has gone (or is going) through it.

I am well. No evidence of disease through the second round of post-chemo CT scans. Next "viewing" is in December, right before we head to SunRiver for a week of post-Christmas skiing and playing in central Oregon. It's nice to have stuff like that to look forward to...

Saturday, August 16, 2008

Sad news - Leroy Sievers has died at age 53

A great light for me - now extinguished - and I am sad. In so many ways Leroy's blog was a vicarious living for me. And his valiant fight has ended. I discovered him just after my own diagnosis with colon cancer, as he had just described his own cancer journey on a television program Living with Cancer. His death is a reminder to me that nothing can be taken for granted, that our efforts daily must be wholesome, and that fighting does not always mean winning.

I am sad. This is hard to write about, because he was NED/NEMD for four years and then his world went to hell. And I must admit to my own fears and uncertainty.

You can find a nice description of his life at the NPR site ( and a wonderful commentary about his impact on the blogging world at his blog (

When the second shoe drops, it can be very loud.

Peace and love everyone - and live strong.

Sunday, August 3, 2008

Story of a Life

The other day I was walking to work, listening to my iPod, when Harry Chapin's "Story of a Life" shuffled its way to my earphones. In case you haven't heard it recently, Harry writes (and sings) of the twists and turns of a young man's life - much the same as Cat Stevens' Father and Son, though with a different flavor. And I have been reflecting (slowly, you might think) on the value and experience of blogging.

Huh? What's the connection here? How did we jump from classic folk songs to blogging without so much as a how-do-you-do? Well, my thinking goes something like this... (1) we all invent our lives every day in the choices that we make and the habits we confirm, (2) we tell those stories to ourselves and our world in the words we speak or write and the relationships that we reaffirm, (3) some of us publish those words (formally in print and informally on blogs and letters), and (4) others read those published works. A blog is nothing more than an un-refereed publication, and it can take on a virtual life of its own (caching is an enormously powerful force for being careful when it comes to writing things down - no real way to ever go "out-of-print").

Great. Now I think the connection is clear. What, no? Well I was once a young man, and sometimes I think that that young man still knocks around inside my biological cache... and there is *nothing* like a cancer diagnosis to wake you up to a lot of things about life. What were those dreams that I was so adamantly pursuing? And why, for goodness sake? And what really separates the fiction from the non-fiction in our lives?

This blog started out being a convenient means for communicating my immediate cancer-related feelings to a close group of people. To be a little more honest, though, it was a means of avoiding the many "replies" that a distributed emailing list generated when I was too tired to do much more than take pills and the occasional shower. I figured that there were people out there that might want to read of my experience - my reality - of being a cancer patient. But my reality was colored by the drugs, the emotions, the fatigue, and many other crayons. I struggle now to find meaningful words and topics to write about.

I have been avoiding the blog. I type comments on other cancer bloggers' sites - I know where they are in cancer-world (to a small extent) having been there myself... but am feeling almost unwelcome by my completion of my treatment. But I still fear - and that is my reality, a story of my life. I am sorry for the silence, because I think there are people checking in with my blog now and again - wondering about a cancer survivor's life. It's just that I feel like the story is now a lot more personal, you know? And I am not sure where to start...

Saturday, July 5, 2008

New acronym - NEMD

I have to admit that I have been holding my metaphorical breath for a bit over a week now. On June 25th, I trooped over to my favorite outpatient center to have another CT scan - which we now realize was supposed to happen PRIOR to my six-month follow-up visit to OHSU. Long story short - the fact that my oncologist left OHSU to become a department head in Canada has created some turmoil in the details of my continued participation in clinical trial N0147, and calendars got shifted but key appointments did not. Oh well, this stuff happens.

Fast forward to July 3rd, where we find the hero of our story making a few phone calls to find out the results of the CT scan. Keep in mind that bad news related to cancer travels faster than the speed of light (translation: if there had been evidence of recurrence or metastasis, my phone would have rung the very next day (at the latest)), so I was not as concerned as someone might be in this situation. Still, I proceeded to call everyone that was supposed to have received the report from the latest CT scan, including OHSU, my local oncologist, and my primary care physician. None of them (not one) had seen any report whatsoever. Suffice it to say that, even given my sense of time as outlined above, this caused me some concern - but the story ends happily. The oncology nurse at OHSU promptly called the Imagery Department and had the report faxed to her. She then immediately called me back and read the report.

No evidence of metastatic disease (NEMD)! I have a few persistent cysts in my liver (apparently you do too - they are VERY common) that have not changed in size or position over the last six months. And that's it... from now on I am thinking that being labeled "NEMD" is as good as being "on the mend."

Live strong.

Tuesday, July 1, 2008

LiveStrong Challenge 2008

I rode the 40 miles in just over two hours (2h07m) - about 18 mph... not bad for an old guy who was a lot weaker just six short months ago. We also saw Lance Armstrong all over the Nike campus. At about the 35-mile mark I noticed that my legs were markedly wobbly, but that could have been due to the heat too.

I promise to post a more prosaic description later this week, but everything seems to be conspiring against me having any energy/time at the end of the day this week... we are preparing for the annual July 4th feast-and-fireworks extravaganza.

Tuesday, June 10, 2008


So, not so long ago, here is the scoop...

Ed, bent over a stationary cycle machine (toe clips engaged, iPod playing some Tchaikovsky, sweat dripping), is trying to maintain some sort of training regime related to the LiveStrong Challenge. Outside the windows it is dark (mind you, it is 4:45pm), and I am attending a work conference in Orlando, FL. Lightning and thunder are trading exclamation points of light and sound, and there is a deluge engulfing the Marriott World Center Resort. I am sitting still but pedaling through the "random" hill course on a "Star Trac" cycle, and I am beginning to wonder if 45 minutes at level 10 (out of 20) was such a good idea. Oh, and did I mention that I had just spent 8 hours engaged in a training course related to "Enterprise Architecture"? Well, that too. I completed 12.2 virtual miles in 46 minutes.

Just over a year ago, I started chemotherapy for colo-rectal cancer that surprised the hell out of me and my family. Just over a year ago, I started working for the State of Oregon (again) as a policy analyst. Just over two weeks ago, my primary care physician said, "now that we are back into a normal health situation, we really ought to get an update on your cholesterol levels." THAT, I might venture to say, is a very good sign.

I like to think, occasionally, that I am a normal person (others may disagree, and they can just bite their proverbial tongues). But then I try to describe my line of work, which regularly leads to glazed-over eyes and a polite retreat. I am not sure that "enterprise architecture" is a more-simple response to the "so, what do you do?" question than "enterprise GIS collaboration and policy." So I am coming to terms with the idea that what I do is fairly esoteric, and not exactly prone to a simple description. For those that have known me for any length of time, this is not a significant change. For the rest of you, welcome to my world.

But I like to think that things are returning to normal - whatever that means. I am semi-seriously thinking that the kitchen DOES need to be remodeled, and there are some other house projects that we should think about - insulation for the attic and south walls sounds good, and what about a solar water heater? And an EA program for Oregon does not seem particularly far-fetched...

Normal - all the stuff you don't think about as important that really is.

Saturday, May 24, 2008

Challenges in life

As the aphorism says, you'll never know what you can do until you try. Or something like that... Over my short-but-not-so-short-anymore lifetime, I have approached and conquered or been defeated by many challenges. Some of them were silly little things like a lemonade stand business - where we had such great initial success (underwritten by a grant from Mom) only to find that the ingredients and transport time and a saturated customer base (everyone had already bought lemonade) and a cooler evening made for an overall negative income for that day. Others have been earthshakingly difficult - like writing a Master's thesis over the course of eight weeks one sultry, caffeinated summer in State College, or slogging through a toxic chemical haze toward the elimination of cancer.

Just last weekend the temperatures topped 100 degrees all around Oregon. Following a phenomenal snow season last winter, this led to some pretty impressive, snowmelt-fed stream flows. Nothing resembling a flood in our neck of the proverbial woods, but rivers and streams in the valley are much higher than they usually are in May. So I am out for an early morning training ride on my bicycle, and am riding on familiar bike paths adjacent to the Willamette River. The path is about four feet wide and is paved with asphalt. I am near the end of a roughly 15-mile ride, and at one of the dips in the path I come across about 15 feet of standing water (an inch or two deep), which I carefully ride through and think, "Hmmm... unusual." But thinking no more about it I ride on.

This path is a long double loop, and I am traveling on the outer loop - which means a long ride in either direction. As I am nearing the end of the loop, where it rejoins the road, I notice some more water over the path and begin to ride through it as before. This stretch of water-covered path is at least 50 feet long (it goes around a bend ahead), but my recent experience did not set off any alarm bells. It would be easier and faster to ride through the water than to turn around and ride back, and I did have to get ready for work.

Bad decision. In no time at all, I was pedaling through deep enough water that each foot submerged at the bottom of each pedal stroke. The grass-lined path winds between a farm field and a line of trees beside the slough, so I couldn't see very far ahead, but I knew where the path had to be even though it was submerged. It was too difficult to turn around without getting off the bike, which would mean disengaging my cleats underwater while trying to remain balanced. The drag of the water began to make pedaling really difficult, and the water was now almost as high as my knees. Feeling pretty dumb (and a little concerned), I needed to downshift to maintain my forward momentum. I feared that losing momentum would soon have me toppled over into the water, since my submerged feet would not allow my cleats to disengage quickly enough to let me step off the bike and stand up. With some trepidation, I reached down to shift gears (actually, this was no problem, as the water does not really affect mechanical devices that are well lubricated with grease) and then pedaled mightily against the added resistance of the water up the gentle slope toward the road. Soon enough, I was on dry path again, and was merely a little wetter than the sunny day would have generally caused.

I rode through knee deep water for a mere two hundred yards or so, but the time seemed to stretch on forever. I rose to this challenge, and my strengthening legs were more than a match for my underutilized brain (this time). It's a good feeling - finding yourself able to weather an unexpected challenge. And it was nice to know that some of the faith that I used to have in my body is returning. But, if you can avoid stuff like riding your bike through knee-deep water at the tail end of a fifteen mile ride, I suggest that you do so. It's much easier, safer, and faster, to just backtrack a little and ride around the obstacle.

Life sometimes throws us a curve ball. But it is nice to be pleasantly surprised when you not only swing at the pitch, you actually connect. You'll never know if you can hit that ball until you step up to the plate. And if you haven't already done so, consider a colonoscopy to check out the lower insides. Shaving off a polyp or two or finding a small something is FAR better than waiting and finding a larger something that then has surgical and oncological implications.


Sunday, May 18, 2008

2008 LiveStrong Day

Hello Blog-land,

Last week was a very long week. Between the early morning bike rides and the long days, it felt like at least ten days over the course of the seven that actually passed. But the point of this blog is to talk about LiveStrong Day 2008 - which occurred on Tuesday last, and featured at least 50 people milling about our front yard and porch connecting with each other around the impact of cancer on our lives. We had doctors and nurses and representatives from cancer care facilities and a wonderful trainer (who specializes in helping cancer patients and survivors stay as physically active as possible) and friends and neighbors and people who are now friends and political campaign representatives and... well, a bunch of really neat and good folks.

My wife and her friend (breast cancer survivor) put it all together. Food and information were plentiful, but the main (and best) part was meeting other cancer patients and survivors that needed to know stuff. I don't claim to know everything, but in the process of dealing with my colon cancer I learned a lot and so had many other survivors. There's nothing like seeing and talking to others who have "been there" and who are still here to smile and laugh with you, and to suggest ideas, and to connect you with other info...

I am still recovering from the emotional and physical trauma of colon cancer - but that day was a long and wonderful day. The Lance Armstrong Foundation is working hard to make this topic a more central one, and we should be thankful for his work. I am.

Monday, April 28, 2008

Things look (and feel) different now

So, as a cancer survivor, I sometimes find myself watching people and wondering. Wondering whether she has been thinking about how her bowels are working, or whether he even thinks about how efficient and effective his body is regulating the this-and-that of daily life. I find myself thinking about those taken-for-granted functions all the time. And with sincere apologies for the graphical picture I am about to paint, every bowel movement that I have (and believe me, they happen far too frequently) is a little adventure. Will it really feel like I've finished - that there is "no more coming", or will I sit and bear down, and bear down, and bear down, only to find that I wasn't as done as I'd thought. And what, pray tell, did I eat today that made that perfectly awful smell?? Can't really blame the chemo anymore, can I? I mean, it's been six months!

I know that I am one of the lucky ones. I (barely) had a tumor high enough to "save" my entire rectum and thus have no stoma to deal with every waking moment. I did not have radiation therapy - thus opening myself to a lifetime of potential side effects. And I have regained my weight and strength rather quickly. Can it be that last year at this time I was barely walking after major abdominal surgery?

We each walk through this life with our burdens, and our memories, and our trials. And the truth is that my trials are really no harder to bear than yours, or his, or hers. We all have those blasted trials. But I find that I am more tolerant these days, because things look and feel a LOT different this year.

And I, well, I really am thankful for that.

Tuesday, April 15, 2008

Didja ever wonder?

... about how things got to be the way they are? Today while I was walking to work, I had a familiar itch on my upper-right chest - right where the PowerPort used to live. I can't tell you how often I gently itched at that bump over the seven months it was embedded in my body. Surprisingly, I cannot recall a single stranger asking about it, not even a curious kid at the local aquatic center or at the pool on a cruise ship in the Eastern Caribbean. But that scar itches off and on all the time. And a tall, reach-to-the-sky stretch will immediately remind me that there was some cutting and suturing in my lower abdomen. And each night as I slip into bed, my feet tingle intensely until I can warm the sheets...

I know that there are simple explanations for those physical reminders of colo-rectal cancer and its treatments. Peripheral neuropathy and physical scars, you know. But there are the lingering questions about root causes: Why colon cancer in me now? What could have started the tumor's growth, and why didn't my normally reliable immune system kick it the hell out of my colon before it took up comfortable residence?

Was it the beer parties in high school and college? Or maybe that anti-fungal that I took when Julia arrived - taken by me to clear up some toenail fungus and decrease the chance that I transfer a fungus to her in the bathtub? How about a proclivity for steaks cooked medium rare with a glass or three of red wine? Or a lifetime of casual inattention to diet and exercise?

There is my family history - casually shared and remembered over the years, but ultimately the reason for an exploratory colonoscopy and the proverbial "ride" of my life. Father's side has some stomach and other GI cancers noted as 'cause of death'. Is this genetic, even though the markers are not there? What about all the milk I drank growing up (before rBGH, but certainly during the years of global nuclear testing above ground)? And phenlyalanine in certain diet cola drinks. Where should you stop in this wondering maelstrom.

Just wondering if you all think about this crap too... and what it all means. Scratch the itch.

Saturday, April 5, 2008

The other shoe

I cannot say for certain how many times I have heard this line about "the other shoe" and its imminent behavior, or even when I first heard it. I know it has been many years. Apparently, there is a notion that an unfortunate circumstance is akin to a shoe dropping, and since shoes come in pairs then so too must unfortunate circumstances. Conversely (no pun intended), I have also heard that bad stuff happens in threes, and have occasionally participated in web discussions/arguments about that notion. The discussion starts with "how, for example, do we know which stuff counts as bad?" and continues with, "what is the time frame that we should use for the counting (days? weeks? months?)" Needless to say, I suppose, but we never really resolve the questions, and in my opinion the faith/belief perspective of the discussant plays a significant role in their positions on these measures. I am not a believer in twos and threes when it comes to bad things that happen.

Like many of us, I usually wear shoes as a matched set - you know, one for each foot, same color, same style. And before you all guffaw that EVERYONE wears paired shoes, let me remind you about our amputee friends and our trend-setting children. If a shoe dropping corresponds to a person's initial cancer diagnosis, then what is the "other shoe," and do you really want to know? My sense is that you are never really *done* after that first shoe drops. Sure, my family and I have dutifully endured the philosophical, physical, and mental assault of colon cancer in our lives. We have lived through the hell of chemo-therapy, and the anguish of diagnoses, prognoses, and test result waiting periods. It's over, right? Clean slate through one post-chemo round of CT scanning and colonoscopic imagery. Yeah for us!

Well, no, I don't think that it's over - or that it will ever be. I work daily to put cancer as far back in my brain as I can, and to fortify my body through exercise and healthy foods, and by avoiding unhealthy activities. But the threat of a tumor recurrence hangs over me - that proverbial shoe. When it drops, the sound will reverberate back through time to that first diagnosis in March, 2007.

Every day we hear about new cancer diagnoses. Are those additional dropping shoes? Perhaps there are too many shoes in our proverbial closets. Just this week I had the chance to visit with a friend struggling against metastatic cancer of the pancreas. His pain was palpable on so many levels. Cancer is rampaging through our generation, and we do not hear enough about it in the media. We need to do something beyond the individual, quiet, family-and-friends support for those that are on the receiving end of a cancer diagnosis. I am raising awareness (and funds) by cycling in the LiveStrong Foundation Challenge in Portland this June. Team WildWind (named for a street in my town) is our name, and we are hoping to raise $14000 to support cancer research and advocacy through the Lance Armstrong Foundation. You can find out more information at

Shoes dropping and other metaphors aside, we are a small family on this planet... even in our billions. We need to be aware of each others' struggles and look for opportunities to pick up those shoes.



Saturday, March 22, 2008

Colonoscopy 102

The previous post (below this one in the blog) described the preparation for a colonoscopy. Here is my record of the experience itself. First thing was check-in, where they verified who I am and how I planned to pay for the procedure. I was made to read and sign the post-procedure instructions, and then indicate who would be awaiting my recovery and driving me home. This all felt routine and simple to me. Then we sat in the waiting room until my name was called.

A nurse came to get me within about five minutes, and we went back to a comfortable little room. On the way we stopped at a scale (180.2 lbs with clothes and shoes on). The nurse stepped out of the room as she asked me to change out of my clothes and into a standard hospital gown, leaving socks shoes and t-shirt on. (It is a sign of my experience that I knew to tie the back first before pulling the gown over my head.) Then she took the rest of my vital statistics are (height, blood pressure, temperature, etc.) and another nurse came in to prepare my IV line.

Moments later, we walked into the examination room and I climbed onto the exam table. I was quickly introduced to the exam nurses, and one of them attached four monitor patches to my chest and arm. Moments later my doctor arrived and we chatted a little while he gets into his gown, and then he asks me to turn onto my left side. In this position, I could see the video monitor that he would use during the procedure.

Then I was being helped into the van by my wife, who said that everything looks normal.

Then I was in my recliner, waking up to find a note from her telling me that food is on the stove. I ate some bean soup, and fell asleep again. And then I was hungry again. No bloating, no pain, no real memory of anything after turning on my side on the exam table.

Did I drool? Did I say anything funny? Who knows. But the procedure was completely uneventful and straightforward. Every exam should be so simple... and the results so positive.

Colonoscopy 101 (warning - long post!)

These procedures are now a regular part of my life. And if you have any family history of colon "stuff" (polyps, tumors (benign or malignant), etc.), you should get one as early as your 40s. Please do so. It is so much easier than the alternative of finding out later when there are chemo- and radiation therapies to endure. That said, here is how it goes [my commentary will be in square brackets].

Purchase two (2) bottles of 1.5 oz (45 ml) Fleet Phospho-Soda at any pharmacy, in the laxative section. [This is easy, but be sure to get the 1.5 oz. bottles and not the enema squirt bottles. Each 1.5 oz. bottle cost about $4 US.]

One week before procedure: Do not take IRON, vitamins, or herbal supplements; try to avoid food with seeds (flax seed, popcorn, nuts, berries, etc.); take your usual medications UNLESS stated by your physician (aspirin and Tylenol are OK); EXCEPTION: Ask for special instructions if you take major blood thinners such as Coumadin, Warfarin, Plavix, or Aggrenox or if you take insulin or other diabetic medications. [Apparently, these things affect how your colon behaves or its interior lining - you don't want any micro-tears from sharp seeds, or funny colors from supplements when they inflate your colon with an inert gas prior to the camera look-see!]

Three days before procedure: Stop taking fiber supplements (Metamucil, Citrucel, etc.) [You definitely want the laxative to clean you out without fiber supplements working to stop you up.]

Two days before procedure: Eat lightly (chicken, turkey, fish and soups); avoid red meat and fatty foods; NO SOLID FOOD AFTER 5:00pm. At 5:00 pm begin clear liquid diet (water, coffee, tea (NO milk or cream), clear fruit juices (apple, cranberry), soda pop, Gatorade, bouillon, popsicles, Jell-o (avoid the color RED); avoid alcohol. My doctor recommends drinking at least one liter of Gatorade today and tomorrow. [After my experiences with a lower abdominal resection and the partial bowel obstruction, this was not such an ordeal. And it is only for 36 hours or so... you can do this.]

One day before procedure: Continue clear liquid diet; NO SOLID FOOD; it's important to drink at least an 8 ounce glass of clear liquid each hour you are awake. 9:00am - Pour 1.5 ounce bottle of Fleet Phospho-Soda into a 4-8 ounce glass of cool clear liquid (ginger ale or 7-Up is recommended). Drink and follow with an 8 ounce glass of water. ** Stay near your restroom from this point on. ** PHOSPHO-SODA doses must be 10 hours apart. 7:00pm - Repeat dosage of Phospho-Soda as previously described. [This stuff is vile. It is the most distasteful part of the ordeal - for me even more distasteful than the evacuation that it causes! My advice: refrigerate the Phospho-soda, add as little "cool clear liquid" as you can, and drink it quickly. Have the full glass of water ready to rinse the taste out of your mouth. And concerning the proximity to a bathroom - this is an imperative! Also, it's a good idea to heed the suggestion about Vaseline/Desitin described below.]

Day of procedure: Continue clear liquid diet up until one hour before your exam, then nothing by mouth until after the procedure. Wear loose comfortable clothing. Please keep all valuables at home; be sure to bring your insurance card. [You will only partially remember stuff after you are in the recovery room. The comfortable clothing is to make getting dressed easier afterwards (you are wearing a gown, t-shirt and socks during the procedure).]
IV sedation will be given to you for this procedure. You MUST bring a driver with you to wait in the waiting area during and after the procedure so that the doctor has someone to talk to regarding your release instructions. You CANNOT take a bus or walk home. DO NOT work, operate heavy machinery, or drive until the following day. [Absolutely good advice. I do not remember getting dressed, getting into our car, or arriving at home. I remember waking up in my recliner. Scary.]

What if I have major medical changes between the time I schedule my procedure and the procedure date?
Please notify our nursing staff as soon as possible so we can make any adjustments to new medications or possibly change your preparation routine. If you are having heart issues you may need to delay your scheduled procedure until your cardiologist feels it is safe.

What if I accidentally take my vitamins within 7 days of my procedure?
If you take potassium or folic acid with your prescription medications, please continue. If you accidentally take multi-vitamins, just do not take any more. If you are taking an IRON pill, you may need to reschedule your procedure because it will leave black tar on your colon wall.


What do you mean by clear liquids?
If you put a liquid in a clear glass and hold it up to the light, you should be able to see a newspaper through it. It cannot have any solid in it whatsoever.

After I take my first PHOSPHO-SODA preparation, I begin to have clear bowel movements. Do I still need to take the second dose?
Yes. You still need to take the second dose to ensure proper cleansing of your colon for the best visibility possible.

What if I can't find anyone to drive me home after my procedure?
By law, we cannot release you without a ride home. You cannot ride a bus or walk, but you can take a taxi or medical transport if you absolutely cannot find someone to give you a ride. Our doctors prefer that you have someone in the waiting area during and after the procedure so they have someone to speak with regarding your release instructions and if there are any complications. The sedation used during the procedure can cause slight amnesia so you may not remember anything.

You should coat your rectum with Vaseline or Desitin before you start drinking your laxative to help with irritation. Reapply after every bowel movement. [Good advice - I wish I had heeded it!]

Our doctors highly recommend drinking Gatorade or Powerade the day before your laxative preparation and during the preparation to prevent dehydration. [Yes. You will be amazed at the volume of liquid that Phospho-Soda causes you to release. Totally amazed.]

Restriction of activity - the intravenous sedation you have received will slow your reflexes and affect your judgment.
1. Do not drive a car, operate equipment, or work around sharp objects until the day after the procedure
2. Do not make important decisions or sign important papers for at least 24 hours.
3. Do not drink alcoholic beverages for 24 hours.
4. The day following your procedure: resume full activity.

Diet - you may eat and drink normally one hour after the procedure.
Treatment for common effects - bloating, excess gas, or mild abdominal discomfort: rest, eat lightly, and use a heating pad.

NOTIFY DOCTOR - If you have any of the following:
1. Fever or chills
2. Severe abdominal pain or new chest pain
3. Spitting up or vomiting blood
4. Passing blood by rectum (2-3 tablespoons is OK)
5. If IV site becomes infected or is painful

I received a nice little summary and a copy of the pictures taken of my insides. Interesting. I hope this is useful information for all of you out there in blog-land!

Tuesday, March 18, 2008

Walking a little more lightly

When I was a younger man, say in my late teens (watch the snickers out there!), I would revel in the out of doors. In my fading memory, I went hiking or climbing every other weekend - first with the Boy Scouts and then with friends in college. Summers were a special time, when we could plan and then execute trips of 50 miles or more throughout the Washington Cascades and Olympics, and even into the Canadian Rockies. There were meals to invent, package, and dole out among the group. There was trail planning, with an eye towards appropriate distances per day and campgrounds. And, inevitably, there were the blistered feet, the feeling of pack straps literally cutting into shoulders, and the sweat of the trail. Of course, these drawbacks were more than counterbalanced by the exhilaration of accomplishment at the end of each day, the warm camaraderie found while singing old songs around a campfire late into the evening, the freedom from the noises of the city and its constant humming energy, and the chance to be outdoors.

One of my favorite moments during a day's hike occurs right when we arrive at the selected campsite. I would stop, look around for a moment to get my bearings and decide on a tent location, then shrug off my backpack and unlace my boots. Then, for the next few moments walking around barefoot, I felt like I was floating. The weight of a tent, sleeping bag, cooking utensils, stove, clothing, etc. quickly adds up, and once you remove that burden your legs can tell. You feel like you are walking on air.

Today I feel just a little lighter on my metaphorical feet. After a mere twelve, uncomfortably toxic months, I got a clean bill from the same gastroenterologist that shined a light where light rarely shines at the beginning of this cancerous adventure. My second annual colonoscopy was completely clear. No additional blebs, no unusual colors, no bumps, no divots - just your basic healthy colon. The procedure summary (like my colon) was short and to the point: "Evidence of prior intervention in the colon, otherwise normal colon." This is almost as good as seeing the word "unremarkable" on a radiologist's report. And his recommendations? "Colonoscopy recommended in 2 years, patient will be sent a reminder letter - resume regular diet as tolerated."

Ever felt like you could walk on air? Yup, me too.

Monday, March 10, 2008

From the mouths of babes...

I am sure you all have (or have heard) stories of kids saying the wildest things - profound observations of the reality they see, or naked assessments of those realities in the words they have heard their peers and family members use. Some of these child-remarks are so poignant as to bring you up short, stopping you in your proverbial tracks (physically and emotionally), and some are so funny that you nearly choke with suppressed glee. I love to hear their innocent words - they challenge my world-view in ways that adult-speak cannot.

Cancer. There, I said it. It alters perceptions, it alters expectations, it can suck the stuff of living out of a family, a neighborhood, a small person's world. You are probably tired of my repetitive focus on this word. We who share a path with children will go to great lengths to care for their views of cancer and shield them from too much exposure to the potentialities of a cancer diagnosis. I cannot say how anyone should (or shouldn't?) broach this topic with children, but I have a couple of ideas to share about a recent experience in CancerWorld-Ed. Maybe there is an insight here that you might find useful...

(1) I felt lucky that some dear friends had (unfortunately) just gone through a similar journey with cancer, that that journey was ultimately positive, that they were so open with us about their struggles and successes, and that my daughter had a chance to support her friend as she went through the same thing that she was now experiencing. But I am so sorry that this had to happen to them.

(2) I was so heartened by her ability to see the cancer treatments as something separate from Daddy, that she could accept my fatigue, frustration and shortness as symptoms of those treatments, and that she was (and remains) so brave in the face of an unexpected and unpredictable change to her world. She and my wife are my heroes, and I am sure that I didn't tell them that frequently enough.

(3) Just the other day through a remarkable after-school conversation, I was surprised and somewhat saddened to learn that she had the idea that cancer was communicable - that she thought she might "catch" cancer from me. This bolt from the blue was so surprising to me, and my initial stunned response - that we sure can learn good stuff from books and in school - seems pretty lame. She learned this by reading from a book, at school, in the third grade. This is a good thing to be encouraged to do (find out information from outside resources). But I am ashamed to admit that we never considered her child-like understanding of illnesses as we adults struggled to deal with that new reality in adult-terms. To my recollection and great relief, she NEVER shied away from hugging me, snuggling together to read books, holding my hand, and giving (and receiving) kisses goodnight. I am so sorry, but so proud.

I know that this is a little indulgent and off-topic, but I believe that the impact of a cancer diagnosis on the mental state of the spouse and close family receives too little attention after a cancer diagnosis. I am a lucky guy to have had the amazing and unconditional support of my wife, family, and close friends. But I am troubled that her concerns about a future quality-of-life-gone-all-to-hell have not been articulated, appreciated, and addressed. I can only say that we need to be raise awareness of the needs of cancer families - and want to thank all the friends that appeared from nowhere to alleviate the daily stress of feeding us, of distracting us, of supporting us while we wrestled with the Beast. Listen to each other... and especially to the children.

Saturday, March 1, 2008

Looking into the flames

For as long as I can remember, I have had a certain fascination with fire and water. As a young Boy Scout, I used to think that these juxtaposed interests were enormously entertaining - for hours I could throw rocks into water (any body of water would do) or play with fire. I have been told that one of my favorite activities as a very young boy was to go to the base of the newly-built Interstate 5 Bridge over the Montlake Cut to throw gravel into the water. No doubt some poor city employee had to deal with my enthusiastic rock tossing...

But fire had and continues to have an uncanny ability to draw my attention. As a scout, I prided myself on my ability to quickly and safely build a campfire. To this day, I still feel practiced at that craft. But the building is but the beginning. I can stare into a fire's magical flames for hours (or at least until I need to poke it and add fuel). The flames dance, shifting color and size... the wood glows different shades of orange, red and yellow intertwined. Complex carbon chains dissolving into oxygenated gases and ash, releasing the sun's bound energy into a vastly cooler world. As a chemo-patient, I treasured the privileged position I was allowed to assume in a close friend's living room next to their fireplace - seated in my portable recliner, just to the right side of the center of the room, wrapped in blankets and thick sweaters - while love and support swirled around me and my family, and a fire crackled and glowed. As a post-chemo cancer survivor, I still find that I am drawn to that fire, warming my heart as well as my neuropathetic hands and feet.

And of course, I find it impossible to resist briefly writing something about the metaphorical aspects of flames and facing (and then living with) cancer. Where to begin, though... A life uncontrollably consumed with anxiety, with chemicals, and with a new set of sensitivities? The kindling of new ideas and reoriented priorities? The need for sustained oxygen, for a changed fuel supply, for a different source of energy? Wondering, wondering, wondering... Trying to plumb a future that does not feel completely mine. My cancer diagnosis makes me regularly look at the fire in my life to see what's there, and why it's there, and if it's the fire that I want. So far, I see more questions than answers in the flames of my life, but I am so thankful for the chance to look and ponder.

I may have mentioned this before, but I do not know how I might handle a cancer (or any other dread disease) diagnosis in my wife. I do not know how I could handle the calm and gentle discussions that would need to occur with our daughter. I am a capable adult, and a good parent, and a competent homeowner... but I could not alone raise my daughter and keep my house at even half the level that we do together. Somedays I wish I could see this cancer-nightmare through her eyes - to understand how she sees me and cancer - but I cannot imagine her with cancer and me as the sole parent-companion-caregiver. I am too impatient, too needing to be in control, too hard on myself - and that rubs off on everyone nearby.

The flame of our lives requires constant maintenance. Too hot and it may burn out, too cool and it may extinguish itself. Not enough fuel/energy/oxygen - we all need to concern ourselves with maintaining our flames. And our fireplace - the loving support of friends and family - is as important as the individual flames that mingle there. Such platitude, aphorism, euphemism, and metaphor in so few paragraphs - what a mixed up mess of thinking. But there it is. Each day, each moment, we each look into the flames of our lives, and see what we see.

Sunday, February 17, 2008


Wow, now *that's* a catchy blog title - sure to reel all you readers right in, eh? Well, that's the way it is sometimes. But I will definitely win *spot-on* points for accurate topic titles (if such a thing exists outside the world of middle-school English homework). But, to my point...

Chemo-therapy does all kinds of wonderfully toxic things to a person's body and mental condition. As I have mentioned before in several blog postings, there is nothing quite like the intentional poisoning of oneself to get you to notice your physical and mental state on a regular and ongoing basis. That said, I recently re-noticed the ridges that formed in each if my fingernails during chemo. At regularly spaced intervals (about a millimeter or so?), there were clearly defined ridges that I assumed would directly correlate with the periods of my infusions. The ridges would define the normal growth of my nails between treatments and the valleys would be the times when the oxaliplatin/fluorouracil combination were inhibiting growth of any and all fast-growing cells. Academically, this is kind of cool - getting to actually *see* the intended effect of the toxics on my very own self.

But, why re-notice that again now? It's been three whole months since my last treatment, right? Well, the two treatments before that one were spaced about five weeks apart and that means there is a larger gap between the last two valleys on my nails. But I have also noticed something else. The close-ridged parts of my nails are very brittle. They break off unexpectedly, and on my thumbnails are kind of "delaminating." This makes them catch on all sorts of things, so I have been trying to keep them trimmed very short. Guess-timating based on the distance between the quick (isn't that the name of the source of your nails?) and the last valley, my fingernails should completely grow out by June or so - almost exactly one year after the chemo-therapy began.

That's almost poetic, in a fingernail growing sort of way...

Saturday, January 26, 2008

Just thinkin'...

As many of my friends and most of my family will attest, this is dangerous ground. Ed "thinking" is something to fear, as I understand it, because it is pretty unpredictable in terms of conclusions and even communication. As in "how the hell did you come up with that" or "come again, I didn't follow you there." So be it. Just be thankful that you only have to endure this every once in a while. For me, it's 24/7/365.25, thankyouverymuch.

I have been reading compulsively these last few weeks. This is partly because I have more energy again, but it is also to find some answers. But, you ask, what are the questions? Ah, this is the rub - I am not sure what the questions ought to be these days. For the majority of 2007, I was submerged in a sea of anxiety, adrift in the impenetrable mists of interrupted normalcy, and too damned tired to reflect on the flotsam, jetsam, and general floating junk of living that whirled around me in that foggy ocean. So, I read. Fiction (fantasy, sci-fi, alternate histories, and historical) and non-fiction (predictive global warning, DNA, food manufacturing) - all set to distract me from the here-and-now, I guess. Questions like... what causes a cancer to develop and take hold in one's colon, or breast, or lung, are there any probably-cancer-causing variables that I should try to control (and which ones are random), should I further change some aspect of my daily "living" to enhance my chances of celebrating a longer life? Big questions.

And little questions too... should I walk to work in the sub-freezing temperatures of mid-January (improving my strength and energy, but possibly damaging sensitive and re-growing nerves in my hands and feet)? When is the right time to visit my general practitioner to "check-in" - she did not hesitate to suggest the colonoscopy that ultimately led to my new world, and I think she deserves to hear about my progress, but I am still on the clinical trial follow-up schedule and maybe another doctor visit isn't needed? And how important is that self-accumulating pile of paper on my desk, anyhow?

Work is another sticky dilemma. Some days it feels like the work challenge is really no different from being a cancer survivor. In both situations, we are trying to move past old habits by way of a new reality into a new organization of living - and we are struggling mightily without a roadmap. In both situations, we need a re-established baseline of "facts" upon which we can rely. And where does that baseline come from? How the heck do I know... but I know that I need it.

I am continuing with my exercise program - three days a week, for about 30 minutes each session so far. I am sleeping OK, if you can ignore the constantly tingling (to the point of annoyance) in both feet. Oh, and the flatulence! Woo-wee, that's a real stinky place these days. But is it my diet, or am I still readjusting internally to the lower abdominal resection of April, 2007? I won't go into any further detail, but the resolution of that surgical procedure can take as long as 18-24 months... and that does not seem to include any complicating realities forced onto the situation by five months of chemo-therapy.

Just thinkin'. Lots of questions, no apparent answers yet. Just thinkin'.

Friday, January 18, 2008

PowerPort surgery redux

It's been about six hours since I became "port-free" and my chest hurts a little. Actually, it doesn't so much hurt as it itches. You know what I mean, that kind of incessant itching that you just can't scratch? Not quite as bad as a mosquito bite itch, but pretty bad... By pressing on the bandage, though, I can at least ease the itching for a bit. But I am ahead of myself here, in that you are missing some essential details.

My appointment for port-removal was scheduled for 2pm - suffice it to say that Dr-time and my watch did not coincide today. By 2:30, though, I was sitting on a paper-lined table, awaiting the surgeon. I was simply instructed to remove my shirts and sit. The wait was not too long, and in walked the doctor and his nurse. We chatted about the time that had elapsed since my last visit (June 1st, when he put the port in), and about raising kids and the next thing I knew I was lying back on the table, with a blue cloth draped over my chest and betadine-colored skin. He told me that he was ready to go and that there might be a pinprick (I mentioned that the needle he was using could not come close to the weekly port accessing needles, and the blood draws, and what-not). After a few minutes for the local anaesthetic to take effect, he grabbed his scalpel and started to incise.

Very surreal. We are still chatting about the day-to-day, but I can see the entire surgical progress reflected in his glasses. Blood wells up a little at the incision site, which he deftly dabs away with a sponge. I then ask if I am supposed to feel the knife cutting through my skin... and he asks if it hurts. I respond, "no, but I can feel the knife cutting through the skin." He chooses to inject a little more anaesthetic, and then I feel no cutting. Those nerves are so easy to trick into silence, aren't they?

He works away at liberating the port from under my skin, even to the point of more work with the scalpel, and finally announces that it is free (imagine a lot of tugging and squeezing). "Ready for me to pull the tube out?," he asks. Being in the position I was, I immediately said sure and he gently pulled the (surprisingly short) tube out of my chest. He asked if I wanted it, saying I had bought it and it was mine to keep... so I am now the proud owner of a used PowerPort. Of course, with these devices as soon as you drive them off the lot they lose all value to anyone else, so I can't even try eBay... Ten minutes of subcutaneous suturing later (skin has some superglue and tape on it, sutures will dissolve in a few weeks), all is done.

Tomorrow I get to remove the bandage and take a shower. After next Wednesday (five days post-surgery) I can do upper-body workouts again. The last vestige of my colonic cancer treatment experience is history, and now we only have to endure and resolve the periodic examinations for the next gazillion seconds or so...

This is a good thing.

Thursday, January 17, 2008

What's next?

Well, that's quite the question I am struggling with these days. I am feeling pretty good, and my strength is slowly returning. I am working on two short-term goals with my exercise trainer - a skiing weekend in March, and a 40-mile bicycle ride (this year's LiveStrong Challenge) in June. I wonder if this is my new reality, or if this is just a lull in the cancer storm?

The tingling remains - fingertips and the soles of my feet. Cold temperatures make the tingling quite painful (and thus I am glad to live in the mild Willamette Valley during the winter), and holding cold objects is something I approach carefully. And the toxic flatulence continues (not that you asked!) But I feel like I am sleeping better, and that is quite a big deal.

Oh. Tomorrow I get my PowerPort removed. I must admit to a little apprehension about this procedure, as I am told that it is done in the surgeon's office with a local anaesthetic... As you will recall, the port is just under my skin on my upper-right chest, and there is a catheter tube that goes from the subcutaneous port chamber into a vein under my clavicle and into the superior vena cava just above my heart. During the removal process, I imagine a cut will be made through my skin, and the chamber will then be removed along with the catheter tube. As I will be awake during the whole procedure, I also imagine that there will be some tugging and then the tube will pop out of the clavicular vein and be out... but I do not have a clear understanding of what happens with the little hole that must then appear in that vein (where the tube used to pass in). I guess my logical curiosity is just going to have to await the outcome...

More tomorrow...