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

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

Fingernails

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...