Inside Ed.

Mele Kalikimaka, part deux

2011-12-26T09:10:00.000-08:00

So - a week in the tropical sunshine was an unexpected pleasure. Honestly, I am not a hot weather kind of guy. When it gets warm (and especially if it is also humid) I retreat into a kind of preservation mode. It is like I am a walking radiation detector - feeling heat radiating off of everything. I know that I can be somewhat prickly when I feel like there is a way to keep cooler that others do not seem to recognize (say, quickly closing a door to keep cool air inside, closing window curtains to keep sunlight from entering and warming surfaces that then warm the air, etc.) Waikoloa at Christmastime has been magnificent. 80 degrees during the day, sometimes windy, 68 degrees at night, usually breezy, gorgeous clear mornings with stars stars stars in the sky.

Green sea turtles hauling themselves up onto the beach and rocks for their afternoon constitutional naps. Why they do that right now in front of us is less important than the evolutionary impulse that created this insane variety on life. Birds adapting to isolation on an island in the middle of a vast ocean of saltwater. Grass growing amidst the lava. We Earthlings are a hardy group - plants and animals alike.

Peace and happiness for the coming years,

Namaste.

Mele Kalikimaka

2011-12-22T08:45:00.000-08:00

Monthly blogging? That is kinda pathetic,really. So there is nothing to say for a month? From Ed??

OK - so the drama of chemotherapy has wound down, and the time pressure of work deadlines has eased enough to take some time off. We decided (with the financial help of familial generosity) to spend this holiday season someplace warm and near a beach. Between work and vacation planning, I have been a little bit preoccupied, but in a good way..

Yesterday, we walked the half-mile to the beach, paraded (gracelessly in flippers) into the Pacific Ocean, and cavorted with colorful fish for a few hours. Then, as a kind of dessert we watched six sea turtles haul themselves onto the sand and rocks to warm their bodies in the tropical sun. There appear to be competing explanations for this beaching action, according to a decidely unscientific poll of observers. Theory one (sounding plausible, since it was delivered authoritatively by someone that claimed to witness these actions for a month each year) has that they need to get into the sun so that the UV rays from the sun will eliminate the algae that grows on their shells. Theory two (sounding better to me since it was delivered by a biology professor) explained that the sun warms the turtles and helps them with digestion - under water they can only get to the temperature of the sea, whereas on land they can get much warmer! And we all know how nice it is to curl up for a nap after a big lunch, don't we?

There is so much that we don't really know about our biology, or even our mental capacity. For as long as I have walked this wee planet, I have thought that there were true answers and false ones - that we could figure out the right and the wrong. I learned (initially through a study of mathematics and then again through a practical study of cancer) that there are many right answers, and an awful lot of questions for which the best answer is that we don't know. And I have also learned about warmth, and how it helps with digestion, but more about how it can mean a world of difference in how we interact with other people and our world.

So, rose-colored glasses are a choice we can make each day - put them on! What is the harm in seeing things as positively as possible?

Namaste.

Fitness - conceptually speaking, that is...

2011-11-27T10:22:00.000-08:00

OK - as I noted in my last post, things are looking more and more normal. And they are feeling pretty normal too. I will admit to several second thoughts when it comes to a beer or a glass of wine, and my weight is at a place where I need to think about saying "no" to a second helping (or two). But all-in-all I am ready to think and act like 2011 just didn't exist.

As you will all remember, I have made a point of exercising throughout the whole non-existent 2011 cancer odyssey (redux). I highly recommend to any cancer patient/survivor that they explore the possibility of regular group exercise before, during, and after surgery/chemo. Even though there were (and will be) occasions when you just feel too fatigued to pull off any repetitions, I encourage you to stay with it. In the group setting, with other cancer patients/survivors, I gained a lot of energy and solid support. I cannot say enough about how good that ultimately made me feel. Having a trainer that is aware of cancer and its limitations was an unbelievable experience, and I think I am a better (and stronger) person for that.

Alas, stronger does not mean strong. A couple weeks ago I was chatting with the trainer, wondering if maybe I was ready to "graduate" since I was done with treatment. She simply asked me what my exercise plan was, and when I said I didn't have one she said I had to stay until I did. Wow. Sooooo.... I decided to try out the exercise class/trainer that my wife has been using, in a very basic "CrossFit" program that he was hosting on Thanksgiving Day. Now let me say that he is a great guy, and was very accommodating with my revealed weaknesses, but that class kicked my proverbial butt (and I was using only 15 pound barbells). For context, I have been benching 40+ pound barbells in each hand for a couple of weeks now. As it turns out, my core muscles are terribly weak.

Several "duhs" later - I now realize that I am in no condition for long cycling yet. Apparently have someone slice across your abdomen weakens your core incredibly, and sometimes it takes years to recover strength "down there." My lower back muscles are proportionately over-strong, and they are quick to cramp. I have a lot to learn, and lots of muscle to restore... but I plan several long rides in 2012 - maybe an STP and a Cycle Oregon? Anyone interested in joining me?

Namaste.

Seven weeks later...

2011-11-19T07:05:00.000-08:00

My last chemotherapy treatment was on October 3rd. It feels like a lifetime ago, and yesterday at the same time. I am well into the "normal" catching-up that needs to be done - had a major dental review (full mouth x-rays, which led the dentist and I to conclude that (1) 18 months is long enough for a cavity to form - but just one, (2) two composite fillings have ungainly shadows below them - meaning that I need to have them replaced, and (3) three of my crowns were not correctly seated when they were put in - and they need to be watched/fixed so that the little spurs do not trap food and become cavities or worse. I have two more appointments scheduled for teeth cleaning and dental work to be done on items (1) and (2).

We are also tracking down some of the other (seemingly random) small stuff that has been noticed over the past year. Back in January, one of the things that my oncologist noted - slightly elevated calcium levels - is being checked out by my new endocrinologist. To date, it appears that I may have a slightly hyperactive parathyroid, which may be causing calcium to leach out of my bones slowly. About two weeks ago I had 9 vials of blood drawn for a complete battery of tests and a bone densitometry scan, and I find out about what all that means on Monday. Should be interesting... And then there is the toenail fungus that is being treated by the daily application of anti-fungal toe polish. Turns out that it takes about 6 months for your toenails to completely grow out - and that is how long I have to polish (and un-polish) my toenails twice each day.

My hair has decided to start growing again, but have no fear - the male pattern baldness has been unaffected so far. No one need fear that I will turn into a 2011 version of Grizzly Adams! I am sleeping well enough (though I am told that I regularly snore).

Perhaps most importantly, my energy is back. I am working out twice a week with a trainer at the hospital - but figure that starting in January I will be ready to be on my own. I need to get onto my bike. We are planning a warm, relaxing trip in the near future - I wonder if they rent bikes in Hawaii?

Namaste!

Unremarkable

2011-10-28T20:20:00.000-07:00

Adjective. "Not worthy of note or attention; found in the ordinary course of events; not exceptional in any way especially in quality or ability or size or degree."

This may be my new favorite word. Way back in 2007, I was very happy to hear "no evidence of disease (NED, for short)"... but now my watchword is unremarkable. This is what the professional readers-of-CT-scans (aka radiologists) write down when they do not see anything worth talking about relative to the many organs that a CT scan makes "visible." So, the bottom line is that nothing was noticed (by folks who are trained to notice things) in the CT imagery that we gathered on Tuesday. My oncologist was happy - and that is another reason for me to be happy. Stuff in the square brackets below is color commentary from [Yours Truly].

To wit:
PROCEDURE:
Following the administration of both oral and IV contrast, volumetric CT imaging was performed from the lower neck to the upper thighs, with reconstruction of planar images [requires an hour of drinking barium contrast, a pressurized IV contrast delivery through my port, and a certain level of no-clothing-ness - just thought you would like to know...].

FINDINGS: The lungs remain clear, and no developing nodular mass is seen in either lung. ... No areas of airspace consolidation are seen in either lung. No pleural effusion [buildup of fluid between the layers of tissue that line the lungs and chest cavity] is present bilaterally. No developing adenopathy [swelling or abnormal enlargement of the lymph nodes] is seen throughout the chest. Heart size is normal. [WHEW!] A central venous port is implanted in the upper left chest wall, with its catheter entering the subclavian vein. [Yup... I have a PowerPort there for easy blood draws, chemotherapy transfusions, and CT scan contrast infusions.]

When compared with prior exams [4/7/2011 and 5/22/2011], laparotomy [a surgical procedure involving a large incision through the abdominal wall to gain access into the abdominal cavity] has been performed with resection of two metastatic lesions of the liver. A portion of the left lobe has been resected, and additionally [a little redundancy there, eh?], a portion of the right lobe has been resected. Several small cysts are seen within the remaining liver [perfectly normal, I am told], stable in appearance when compared with prior exams. No new lesion is seen within the remaining liver parenchyma [tissue that is characteristic of an organ]. Pancreas, spleen, adrenal glands, and kidneys all appear UNREMARKABLE. Collecting systems are not dilated.

There are postsurgical changes also identified related to distal colon resection [the surgical procedure I had in 2007]. A suture anastomosis line is seen at the rectosigmoid junction. GI tract appears UNREMARKABLE without areas of wall thickening or dilatation [same as dilation]. No developing adenopathy is seen throughout the abdomen and pelvis. No ascites [excess fluid in the space between the tissues lining the abdomen and abdominal organs] is present. Bladder appears UNREMARKABLE.

IMPRESSION:
(1) When compared with prior imaging studies, there are new postsurgical changes related to resection of two metastatic lesions previously seen within the left and right lobes of the liver. No new lesions are identified within the remaining liver parenchyma. Several hepatic [related to the liver] cysts appear stable.
(2) Postsurgical changes related to distal colonic resection.
(3) At this time, there are no findings of metastatic disease within the chest, abdomen, and pelvis.

Sooooo..... can we have a collective woot-woot and a huge sigh of relief? Thank you, thank you very much. My weight is recovering (now at a nice 172 lbs...) and my energy is returning as well. I worked full-time for the past two weeks, and did not even once feel too fatigued during the day to remain at my desk. November is going to FLY by, with trips planned to New Hampshire, Seattle, Manzanita (OR), and Portland, and a huge gathering for Thanksgiving.

Thank you all for your attention - you will now be returned to your regularly scheduled program.

Namaste.

Stepping forward (and back)

2011-10-09T11:00:00.000-07:00

The 2011 treatment regimen is officially complete. May we (please) have seen the last chemical infusion pump...

This second lost year is harder to reflect on than 2007. Then, it seemed like I could just put the whole cancer business behind me, and go on living. I upped my exercise (some might say manically, especially in the cycling department). I remained moderate in drinking alcohol, and backed off on the consumption of red meats (though that too was not high to begin with). I threw myself into work and projects. And we all grew older together. Regular checkups were positive and unremarkable. Unremarkable became a favorite word.

But 2011 feels qualitatively different. The pre-surgery biochemical therapy, the major liver surgery, the post-surgical chemo... all were harder than last time, and there has been a significant jolt to my thinking about life, the universe, and everything. Two steps forward, one step back? Or is it two steps back? I guess I would like to think that some progress has been made, but I am already loathing the CT scan that I have in two weeks. "We are establishing a new baseline" sounds so practical and ominous... but metastases are now no longer hypothetical for me. I fear another crushing blow to my spirit.

But I am working to remember that chemo is done, for now. I am slowly restoring my internal organic activities to some semblance of normal. I still have a few side effects to deal with, but each day is getting better in terms of appetite and energy. We have a lot of fun planned for the next couple of months, and are making firm plans to find someplace warm for a vacation during the cold and rainy period that we call the "holiday season" up here in the Pacific Northwet. Being done with the bi-weekly chemotherapy is a great physical burden lifted from my shoulders. This is a very good thing, and something that I am glad of.

Namasté, my friends!

Weirdest ride thus far...

2011-10-06T07:43:00.000-07:00

So, yesterday was not easy. For those of you playing along at home, my chemo treatments for the past three months have looked something like this - treatment day 1: 2.5 hours of chemical infusions followed by aches and bed rest, but not much sleep due to steroids; treatment day 2: slightly better than day 1, but still receiving 5-FU via portable pump that goes whirrrr-click every couple of minutes and sleep is still evasive; day 3: pump is removed but I receive an injection to stimulate white cell production (which adds to fatigue for the subsequent two days). But by day 5 things are feeling almost normalish.

Yesterday, day 3 of this last cycle, I was "awakened" by my pump beeping like crazy. I was barely asleep anyways, so that was not a big deal, but the pump indicated that there was an "upstream occlusion" and would not be whirrrr-clicking anytime soon. So I managed to silence the incessant beeps, and called the clinic. They said to bring myself in and they would manually pump the remaining chemo (9 mg in solution) into me and disconnect the pump. That is about half of the infusion that I receive at the very end of every day 1 prior to hooking up the pump, and it really knocked me back. To say that this led to a sub-normal day 3 is an understatement... and I did not even have the injection to stimulate my white cell production!

Exercise class ended with me sitting in a chair with my head down, trying to stay conscious. After ten minutes, I regained enough color that my instructor allowed mr to leave. I had a scrambled egg, slept for an hour, then went to a reiki appointment... which usually energizes me. Unfortunately, not this time. It was a busy day, and perhaps I should have slowed down. But with the sad announcement of Steve Jobs' death, I really wanted to seize my day. And every day.

This morning feels pretty good, relatively speaking. I may even try to catch up on some of my workload - which unfortunately does not seem to realize that I am not there! Best part of the morning so far is that I am hungry.

Namasté.

Energy expended, now what?

2011-10-04T00:16:00.000-07:00

Number six is now coursing through my veins, with a little boost of 5-FU every few seconds for the next two days. Fatigue, but not sleepiness,idead and gut aches, warm flashes and dry mouth. No appetite to speak of, and way too much time to think. No googling info on side effects anymore - they are all too familiar.

Called some medical providers today - one to straighten out a toenail fungus cream (leftover from the ingrown toenail treatments in May, I think) and the other to straighten out billing for lab work done in January. Insurance companies are a bane and a boon. Given my extensive treatments over the years, I am happy to have their support. But sometimes things go awry. Alas.

Going to turn out the light now (it's almost 1am) to try sleeping. Wish me luck!

Where we get energy...

2011-09-27T10:19:00.000-07:00

So, the blogger feels like he has once again let himself down on his commitment to post more frequently (and seems to have adopted an annoying habit - referring to his very own self in the third person). As I am sure I have said before, the idea of thinking and writing about my cancer journey has become less appealing as time marches on. Unfortunately, that leaves my loyal readers and supporters in the proverbial dark. And there have certainly been some dark days this year!

Right now, I am in Boise (pronounced "boy-see"), enjoying the marvelous early fall weather and the amazing energy of the National States Geographic Information Council - NSGIC (pronounced "niz-jick"). This is truly one of the most satisfying professional engagements that I have ever had, and this group has had big impacts on the way that geospatial data are created and used all across the nation. Most if not all of the background imagery that we see on GoogleMaps, Bing, Yahoo, etc. is provided by federal/state/local government collaborations, and NSGIC has led that effort for many years. And that is only one small example of the work that NSGIC does year-round. I get a lot of energy from the excellent NSGICers that work diligently year after year to promote the efficient and effective use of geospatial technologies in government, and consider many of these people among my close friends.

It was also wonderful to have a chance to ride 20+ miles with several NSGICers on Sunday morning. Riding along the Boise River in the sunshine was a great reminder of what my near-future will look like. Over the past few years, my return to regular cycling has energized my life and has created a means to re-engage my self in mindful (and healthy) exercise. Planning and accomplishing long rides are a healthy distraction from the difficult reality of next Monday - my final treatment of 2011. So expect to hear about long-ride options that I am considering in future posts!

Namaste.

New old news

2011-09-19T09:16:00.000-07:00

So, here I sit again, staring out the window into grey cloudy skies that predict an early fall, attempting to drown out the whirrs, clicks, and alarms of the chemo infusion clinic with a healthy dose of Enya. My bloodwork was encouraging this morning, with my neutrophils 'recovered' to a nearly-normal 3000 per milliliter. The bone pain in my left femur was a predicted (and predictable) side effect of the Neulasta shot that I received two weeks ago, and I anticipate another one of those beastly injections on Wednesday to be sure we can finish Chemopalooza 2011 on time. All evidence points to finishing the fifth treatment this week, and then a final transfusion has been scheduled for October 3rd. Woo-hoo.

Karen and I went to the coast this last weekend with three other couples - dear friends that form a wonderful little book club / drinking association. I have been virtually a teetotaler for the past eight months, but let myself get a little wild by having a couple Bud Lite Limes. Lest anyone miss the irony of that, I have long been a fan of handcrafted and small lot beer batches. Local favorites include the Deschutes Obsidian Stout, the Ninkasi Tricerahops, and just about any Oregon-produced India Pale Ale. Drinking Bud Lime is like drinking a weak shandy. But I digress. We had a fun time laughing and playing games together, canoeing in the Siletz Bay, and traipsing around Robert's Book Shop in Lincoln City. It was a perfect relaxative prior to today, and we even got to watch the Packers win.

Namaste.

That giant sucking sound...

2011-09-09T12:11:00.000-07:00

...is not jobs flooding into Mexico after NAFTA, despite Ross Perot's fiery speech. It is the sound of exasperation and fatigue from this particular cancer-boy. I am just past my 10th of twelve treatments (six before surgery, and six after), and it is not getting any easier. Between the chemo and the side-effect management drugs, I have been mostly horizontal for the past 72 hours. I am achy, sleepy, and generally tired. Last night, I was reminded of how I am not all that good with stuff beyond my control - which leads to me trying to control 'something' - and that is also a hard place for me to be. So both physically and mentally, I am not feeling good. Cancer still sucks.

So, only two more treatments! Suck it up. Easier to say than to do. I lament my inability to sleep, that I am cold during the hottest days of the year in Oregon, and that I am too weak to be of much use at home or at work. Two more of these weeks, and we will be on the upswing again. I sure hope so.

I am grateful for all the support I receive daily. My family and I are luckier than many. But today I am tired of feeling lousy, and that is that.

Today

2011-09-06T19:35:00.000-07:00

Somehow we managed to pile nearly 1500 neutrophils into a milliliter of my blood this morning, so I passed into the biochemical soup phase of existence again. Can I repeat for the record that my name is Ed Arabas, my birthdate is "mm/dd/yyyy" (I am hiding this in case there are hacker/lurker-types that skim blogs for important identifying details - most of you know my birthday anyways!), and I am supposed to get FOLFIRI plus aprepitent today?

Very tired and gut-achy, but glad to have number four almost under my belt.

Namaste.

Good times, bad times...

2011-09-02T11:04:00.000-07:00

...I know I've had my share...

Those words are the beginning of the chorus lyrics for a Led Zeppelin song that came out in 1969. The song continues as a lamentation about the promises and disappointments of young love in a time that has been characterized as the free-love era. It is a song that has rattled around my brain for the past forty years or so. But it is easy to take just the beginning lines of the chorus and apply them more broadly - wouldn't you say?

Last week a dear friend from work announced that she had been diagnosed with "advanced ovarian cancer" (but without enough detail for me to deduce much of anything about her prognosis). But just her announcement is a crushing blow, as I feel like I know what is about to happen to her and in her world. She has been a pillar of support for me, and probably didn't even know it. Now the shoe is on the other foot, proverbially, and I am committed to support her however I can. Major surgery occurs this week, and I will be sending positive energy toward Portland on Thursday morning.

Many folks know that I was unable to be treated earlier this week due to my neutrophil level. Neutrophils are a key component of our white cell immunological defenses, and when they get too low (in the case of chemotherapy, below 1000 cells per milliliter) we are more susceptible to the casual illnesses (colds, infections, etc.) that we normally handle without noticing. So I have had an extra week of recovery and feeling good, and can say without hesitation that I prefer feeling good over chemotherapy. Like that is some kind of big news or something. Whatever. On Tuesday we will try a slightly different mixture of side-effect-countering drugs to see if we can improve the post-chemo treatment days a little. And I am moving up from neupogen/filgrastim (five daily shots to encourage white cell growth right after chemo) to neulasta/pegfilgrastim (a single more powerful shot given once the day after chemo). We shall see.

A dear, longtime friend of ours is visiting this weekend so that she and my wife can run a half-marathon together tomorrow. It is nice to hear their laughter together - about running, raising girls, long-ago escapades - and I am happy that I get to share some of their good times. That is really the key - to focus consciously on the good times, and to let the bad times go.

Namaste.

Candle in the wind

2011-08-24T22:12:00.000-07:00

I am unabashedly swiping a theme from a fellow blogger - Jeanne Sather - and companion on the chemically-assisted cancer trail. If you want to see her post on this, look here (http://assertivecancerpatient.com/2011/08/a-word-game-candle-candles-.html).

As you know, I have been struggling with my feelings about cancer and its treatment lately, and the image of a candle in the wind is perfect. I am not referring to the idea that a life might end too soon, like the wonderful tribute created by Bernie Taupin (and sung by Elton John) to Norma Jeane Mortenson (Marilyn Monroe). I am seeing a flame, wavering back and forth, sometimes so close to being out that it is almost dark, sometimes flaming large and bright. A small flame, softly pushed to and fro by a breeze, working past the pool of wax surrounding it, finding fuel in odd places, burning firmly but tossed here and there.

My current experience of chemotherapy is like that - wavering, dimming, flaming - rarely feeling steady and warm. I struggle to sleep, to eat, to not be king of crankyland. I fail and triumph each day. My energy and focus flags at odd times, and I have a memory like Swiss cheese. I recover every couple of weeks, only to intentionally slam myself down again. Though I am honored and lucky to have so many people near and far sending my their energy and love, my flame often burns low.

Only three more treatments. Seems short enough and impossible at the same time.

Namaste.

Chemo, Round Three

2011-08-16T09:15:00.000-07:00

I am sitting in my preferred chemo recliner at the oncology clinic. I have endured the port access and blood draws, have chatted with the physician assistant, and learned that my white cell counts are still low (neutrophils are at 1.21 and they need to be above 1.0 to allow me to be treated). I am getting chemo today, and will also get the five day treatment of neupogen again starting when they disconnect my pump. But I am not optimistic that I will be able to be treated in two weeks. Oh well. Maybe that extra week of recovery is more important than whatever schedule I have in my head?

I have also discovered a sensory reaction to the smell of the chemo clinic and the antiseptic swabs that they use to disinfect my skin prior to accessing my port, and also use to wipe the ends of the plastic connectors for the tubing. Me no likee that odor any more. And I am pretty sure that I will not miss it.

One final note about the chemotherapy process... and how it is somewhat depressing. The spaces that I inhabit during treatment are clinical and sterile, the sounds of the place include electronic bongs (signifying something must be done with someone's pump(s)) and a litany of medical terms explained to everyone around me, and the view from the windows is of treetops and sky - with a growing mass of spider webs that trap dust and cottonwood seeds. Most everyone around me has a dull look of resignation, and today I am the youngest patient in the place. The nurses are very competent and helpful, but they are so busy hurrying from patient to patient - summoned by the incessant bonging of the transfusion/treatment pumps.

Not to put too fine a point on it, but I am not liking this day's work.

Brevity

2011-08-03T20:38:00.000-07:00

I am borrowing a page from another blogger tonight - and will keep this update very brief.

Yesterday was Chemo #2 (out of 6). Red and white cell counts are OK (low end of normal) but my neutrophil counts are low. Not low enough to miss treatment this time, but low enough to cause concern. We are going to start five days of neupogen injections to stimulate my bone marrow. Very slight change that this will cause some bone ache - but that did not happen in 2007 (last time I had this issue). We will know more about that in two weeks when I go in for the blood work prior to treatment #3.

We also got a lower dose of the steroid dexamethasone... went from 12mg to 4mg. This will help with the days of hyperactivity and hopefully with the nights of sleeplessness. But the nausea yesterday was palpable, and not even a little bit fun. But today was a lot better, and I hope that tomorrow will be an even larger improvement. Maybe next time we go with 6mg?

Namaste. Ed

Feeling around in the dark

2011-07-31T08:32:00.000-07:00

So, many several years ago, during my graduate school odyssey in central PA, I got a little bit hooked on spelunking. Crawling around in limestone caves (and there are dozens of them - big and small - in central PA) taught me quite a lot about myself. For example, if you do not look around - especially to the rear - you may have a difficult time retracing your steps. And, if you are the least bit concerned about tight spaces, you probably ought to avoid a little section of the J4 cave that is nicknamed "the birth canal." Lessons learned from spelunking definitely can apply to many aspects of above-ground living.

Silence in the blogosphere can provoke many thoughts and conclusions for a blog reader, and I realize that some folks see silence as a harbinger of news they do not want to hear. To be brief and to the point, I am tiring of the constant thought-space invasion that we label 'cancer.' The quotes signify that there are many non-physical characteristics to this ominous word; it's not just the surgery and chemotherapy effects that make up my cancer world. There are the thoughts and hopes for the future - sometimes dim, sometimes bright. There are the constant reminders from others that are newly diagnosed and starting treatment or survivor companions that have been walking a parallel path - that things are different now. And these intrusions into a normal (read - chaotic, unpredictable, semi-planned) life are unpleasant. But they are also uncontrollable.

A cave is an interesting metaphor... we wear headlamps in a cave, so that we can see any distance forward (and backward) at all... we invent tricks that help us understand where we are in reference to where we have been and where we are going... the noise of everyday living is absent (no cell phone reception, no background traffic sounds, only your breathing and the scrabbling echoes of your party's passage underground). Living with cancer feels like a cave sometimes. In the cave, it's all about concentrating on your journey. It can be lonely. It is certainly very dark at times, most notably when you are without a headlamp's light to help you to see. Sometimes, in a cave or in a life, you turn off the lamp - to rely on your other senses for a while. You can hear your own breathing much more clearly, and there are fantastic smells and tiny sounds that you do not hear without consciously trying. Sometimes we need that sensory deprivation in order to recharge.

I remain focused on finishing my six post-surgery chemo treatments. For whatever reason, the infusion days are harder now - I know what the crumminess feels like, and I dread it. I also know that the crummy feelings end and that there are only five more to go, with my next drip session on Tuesday. Please know that I am optimistic and getting stronger every week through exercise and cycling. I have tentative ideas about a bunch of rides for the fall and next year. The darkness is only temporary, and I know where the switch is for my headlamp.

Thanks for your support. I will try to be better about the frequency of my blogging. I promise. :-)

Chemo, part III

2011-07-18T20:37:00.000-07:00

So, started on FOLFIRI again today. Have a feeling that my body is not quite ready for this poison. And only 5 more treatments. Whoopee.

The dexamethasone (anti-nausea glucocorticosteroid, really hypes me up!) seems to have made my eyesight all jittery and my head is achy. I am only comfortable lying down, and my gut is all kerfluffly again. Forced myself to eat some dinner, and back in the bed again. Hope that i am able to get some sleep tonight. Working tomorrow is still a bit of a variable.

I looked up the pharmacokinetics of dexamethasone, and it is resident in plasma for about 10 hours total, but the total time in-body is 36-54 hours. OMG. No wonder I crash on day three! And guess how the stuff is eliminated... Wait for it, wait for it... the liver! Guess we will find out how I am doing in that department real soon too.

Not to worry though, I am still in a good mental place. Oncologist complimented me on my blood work (you know I crammed for that blood test today) and thought my incision was "healing beautifully". And there were no real surprises during the chemotherapy infusion. My buddy Alison came to stay with me and gave me a ride home (after killing me two games out of three at backgammon). She even bought me some lunch. Love her to pieces, I do. And family took care of us at home all afternoon. Thanks tons. Love you guys too.

Done with this newsblog for today. Amen.

Clarifications

2011-07-11T08:44:00.001-07:00

Two quick things...

(1) All is proceeding apace. My physical recovery is going well, and I am exercising under the supervision of my friend and trainer Nancy. But this does not mean that I am ready for river rafting (did not try this) or for backyard volleyball (tried and failed... stitches are still all secure... :-) ).

(2) The "post date" from the "Dreams" post is correct - it is when I began to draft the post. I only posted it the other day, though, and so it has generated some concern from folks. All remains well in blogland too.

Thanks for staying in touch.

Dreams

2011-06-30T17:46:00.000-07:00

One of the beautiful frustrations of communicating in English is the way that words can have so many contextual meanings. Take dream for example. It is both a noun and a verb, and it reflects both conscious and subconscious thoughts. We can dream of a fairer future, where justice is both understood and predictable. Or we can dream in our sleep, sorting through the confusion of thoughts, impulses, and observations captured each day and over a lifetime.

So dreams look both to the future and to the past, dreams are both fantastical and mundane, dreams try to make sense of what we are/were/hope to be.

I have been having an interesting couple of weeks in the dreaming department. While we all know that someday our tenure here on Earth will end, there is nothing quite like a recurrence of cancer to focus your attention on the importance of family and friends and the impermanence of stuff. My thoughts have alternated between frantically thinking about the future (you know, retirement savings versus college savings versus mortgage payoff, vacation memories and travel plans that *must* occur, bicycle events that I want to do...) and living in the present. Internal decisions about how I will live over the coming few years - alternative diets, vitamin supplements, exercise regimens, work (and the number of hours to work) - all jumble around in my head.

Then there is that other kind of dream - the ones that arrive unbidden in the night as you try to restore your energy for the coming day... These last few weeks have found me recalling strange dreams - walking through a giant metropolitan marketspace (some kind of retro European space, with basement bars, brick buildings, tons of people, and rich smells) with an assortment of friends, all dressed to attend a wedding and arguing about relationships along the way - or an entire night spent trying to figure out why my clipper sailing ship needed to be filled with balsam logs as ballast rather than granite or iron (as if I have any idea about that topic at all!) I am certain that there is a reasonable pharmaceutical explanation for these dreams, and the fact that I am remembering them in detail, but I do not know what that explanation might be. My brain is knitting together pieces of thoughts and coming up with a story. What a wild tale this must be!

"When I want you, in my arms, when I want you, and all your charms, whenever I want you all I have to do is dream." - Everly Brothers

Peace and quiet

2011-06-28T08:41:00.000-07:00

Dear readers - apparently silence can be rather upsetting and anxiety-building for some people. I am fine, and still marching steadily along the road of physical recovery from surgical intervention number two. My incision is healing nicely, though I am in a constant state of itchiness. This, I am told, is a good thing (but the definition of good has been called into question). I am trying to get back into the work routine, and have been granted permission to work up to 20 hours a week. Still no lifting anything greater than 10 lbs... And sleeping on one's side is not yet an option.

But, I am officially back in the saddle as of this morning... 15 minutes at a modest 70rpm on my stationary bicycle setup. I am thinking that three times a week, gradually increasing my time to an hour, is the recipe for this summer' s cycle training. May be able to do a real road ride in September... I am also allowed to start my exercise class again tomorrow - but no lifting, no abdominal strain, and no twisting. I guess this means leg work (squats and stair climbing), balance, and stretching. But it will help with the creation of new muscle mass, which is the main point of my surgeon's order to eat five meals a day (which is harder to do than it may sound).

All else is good. Next surgical consult is Friday, July 1... more blogging after that.

Hot air

2011-06-18T07:59:00.000-07:00

So, another five days have elapsed in my journey toward, well, the next place. I continue to recover, and think that I have found the proper combination of medications that will allow me to sleep. Aspirin is my shoulder-pain alleviator, and I am now going to restart the wean-Ed-off-oxycodone process. The abdominal pain has remained steady (and modest) since just after the surgery, and I am sure that the narcotic nightmares will go away once the narcotics do...

But what does any of THAT have to do with hot air, Ed? Excellent question. Almost wish I'd asked it myself. Yesterday, I received a phone call at about 7:30am from a friend that I was planning to see later in the afternoon. I almost did not take the call, as I was actually still in bed and sleepy, but thought that maybe something had come up and he needed to cancel. No big deal. He said hello, and then there was this awful loud static. I wondered where he was, and soon found out that not only was he in a hot air balloon (the loud sound was the gas burner firing to provide some immediate lift), he was landing in Bush Park right outside my bedroom window. Literally. They were about 100 feet from our front door, landing themselves on the park lawn. The sun was bright, the day beckoning... so I went downstairs, got a cup of tea, and watched. Very impressive.

And, as usual, that prompted me to do some thinking. Hot air balloons are relatively simple aircraft. Pump heated air into an enclosed space, and it will lift. Attach a passenger bucket, and you have a transportation system. But the steering can be complicated, and landings are not always smooth and their location can be unpredictable. Winds shift the flight path here and there, and the cooling of the air in the balloon can leave you in an awkward position if you are not paying attention. That may be the reason that balloonists are not as ubiquitous as, say, car drivers. You need to know when to add more hot air, and how much, in order to maintain a steady and enjoyable flight. And you need a team supporting the landing, to protect passengers and balloon alike.

On a regular basis, we all launch metaphorical balloons - perhaps hoping for a change to our daily circumstances. We wonder how much energy (hot air!) to inject, and how to sustain the effort. Sometimes the effort to insert additional hot air is loud, and drowns out all other sounds... We look around for the support we need to make changes (sometimes the support comes from unexpected places). We look around at our environments, our landscape, from a different perspective, and sometimes see what we can (or cannot) do differently. It is good to have trial balloons in our hip-pocket, so that we do not get stuck in place.

We just need to remember that they are there, and to not float too many at one time...

Namaste.

Upbeat meeting with surgeon today...

2011-06-13T20:17:00.000-07:00

Well, things appear to be progressing well. Dr. Billingsley thinks that my incision is healing nicely. He shared with us the OHSU pathology and CT scan reports (I generally need as much information as possible, in case folks don't know or remember that about me from the 2007 cancer adventure), and that clarified many things for me. His only concern, shared by Karen and me, is my weight. For the first time in over 30 years, I weighed in at something less than 160 lbs (158.4 lbs, with clothing on but no shoes, sweatshirt, or pocket paraphernalia). His prescription for me for the next two weeks? Wean myself off the prescription oxycodone (transitioning to tylenol/acetaminophen or aspirin) and eat at least five times a day. He focused a lot of attention on the eating. Thank goodness I managed to build muscle-mass prior to surgery through the RISE fitness program at Salem Hospital!

So, some additional details for my super-curious friends and family...

(1) A normal human male liver weighs a little more than 3 lbs. Based on the pathology report, nearly a pound of my liver was provided for pathological analysis. That means I "lost" about a third of my functional liver during the resection. The exciting news is that about 90% of that resected liver volume will regenerate in four weeks. No wonder I have been so tired!

(2) The "clear margin" around the tumor from my left lobe was 0.6 centimeters, and from the right lobe was 0.1 cm. On the right lobe, the surgeon then resected an additional 0.4 centimeters of liver mass, and that "re-excision" was completely cancer-free. Good news there!

(3) The OHSU CT scan was generally unremarkable or consisted of confirming stuff we already knew (e.g., I have a port installed in my chest with a tube that runs to my heart, and I have some "subclinical foci" in my kidney (probably related to recent kidney stone)). It is great to be unremarkable!

Dr. Billingsley was concerned that I not start the remaining chemotherapy until I have had enough time to recover physically from the surgery. It sounded like maybe the second week in July (?), and he was glad to hear that I have an appointment scheduled with my medical oncologist (Dr. Tiffany) next Monday. We will be discussing chemotherapy with her, too.

Until then it's "Eat Santa, eat! The children expect a fat Santa!" (from Rudolph the Red-Nosed Reindeer)

Abdominal stuff...

2011-06-12T15:40:00.000-07:00

So, this second time through for abdominal surgery is proving to be no more fun than the first time in 2007. Between the physical recovery aches and pains (I have no idea how many stitches are holding my liver, abdominal muscles, and skin together, but the process of knitting organ membranes, muscular tissue, nerves and skin together is not pain-free), and the recovery from the drug effects (including the anesthesia and the side effects of the pain meds - mainly stomach upset and constipation), I am never really sure what signal is trying to get through. And I have not gotten back to a regular sleep pattern yet.

So I am constantly guessing about hunger, pain (to be tolerated), pain (to be alleviated with oxycodone), urges to use the bathroom, and just tiredness. I spend a lot of time either in the recliner or in my bed, propped up with pillows and drifting from awakeness to dozing. The cats have been generally fun to watch, as they tumble and scamper throughout the house.

I felt like an update was needed, though I have little to say today. Should know a bit more tomorrow, after our consultation with the OHSU surgical team.

Namaste.

Little update

2011-06-07T21:36:00.000-07:00

Life and recovery are proceeding apace. I have my little pill matrix (what I take when), and have settled into the recliner space at the corner of the living room. We are tracking at least two medical situations still - MRSA associated with my ingrown toenails, and the surgery itself. Bactrim is controlling any infection that might come form the MRSA, and oycodone / ibuprofen are tackling the pain bits. Then there are the drugs that counter the constipatory effect of the oxycodone (senna, miralax, and milk of magnesia, in that order). So far we have only had to escalate to miralax.

My sleep at night is not good. Our beds assume that lying flat (on one's back or side) is an option, but those positions put weird stress in my incision. I am also having nasty dreams from the oxycodone (??), and that makes the nights seem to last forever. I am trying to be a good patient, but the sleep deprivation is hard. My next meeting with my surgeon is on Monday, June 13. And I have a meeting with my oncologist on June 20. I hope to have clarity of mind and spirit by then, but am not sure how that comes to anyone, much less a cancer patient.

In short, all is well enough. Will be "back-to-normal" before we know it. Amen.

Where to start?

2011-06-05T08:00:00.000-07:00

Let's not begin at the beginning this time. The tale is long, and the storyteller has to concentrate too hard on typing. I will start by saying that my dexterity and depth perception are definitely affected by oxycodone (or bactrim, or polyethylene glycol). So I sometimes find that I am correcting one word ten or more times! It is frustratingly clear that while I am recovering I will be car-free (too tippy to trust my driving skills) and typing-restricted (my depth perception is whacked). I get tired easily, so reading is a challenge as well. Total bummer. Guess that means mindless TV and movies (DVD and Netflix)! (Luckily for me, I have been offered the use of several DVD libraries by friends.)

Quick run-down on drugs in use today: Bactrim (trimethoprim sulfamethoxazole) - 160mg-800mg oral tablet, 1 tablet twice daily, antibiotic regimen to control MRSA (methicillin-resistant stapylococcus aureus) bacterial infection. Will be on this drug for seven days at home; OxyCodone immediate release 5mg oral tablet, 1-3 tablets every six hours as needed for pain relief; Senna-ducosate 8.6-50mg oral tablet, 1 tablet twice daily, to relieve constipation (hold for loose stools); Polyethylene Glycol (MiraLAX) 17gm/dose oral powder, once daily as needed (hold for loose stools); and, Ibuprofen - 200mg tablets, 2 tablets every six hours for pain relief, (can increase ibuprofen dose to maximum allowable 2400 mg per day as decrease dosage of oxycodone). Also still applying clindamycin 1% topical gel for acneform rash (chest, back, and thighs).

Incision is LONG, beginning at approximately middle of right waist, travelling across my abdomen (and slightly up) to just above my belly button, then straight up to end just below my sternum. It is sealed internally with soluable stitches (too many to see and count through the steri-strips) and the externally with seventeen steri-strips. Total length is about 10 inches.

More incisive dialogue to follow...

100th post is a record for brevity...

2011-06-04T16:15:00.000-07:00

I am discharged as of about 5:30pm today - June 4th, 2011. Relief is spreading across North America and Europe.

Longer posts will ensue, but probably not before tomorrow. And another nurse is added to the shout-out list... Carrie!

Naming names

2011-06-03T10:37:00.000-07:00

So, how many of you got a little nervous when you read that blog title? Hmmmm.... I am sure there is another blog post or two on that topic, but we ain't goin' there today.

Nope, I mean the support staff that have been so wonderful during my visit to OHSU. Many of these people will remain unnamed (because I do not KNOW their names), but they include the custodial folks, the dining support staff, and just everyone I talked to. There is an unnamable pathologist (we do not yet have a copy of the report yet, but know the finding (as expected, metastatic adenocarcinoma) and the fact that there is a clean margin surrounding each tumor).

But I digress. The names I want to share and memorialize forever in the Web are the RNs that were so helpful, professional, and wonderful to me and my analytical habits. Can we have a "way to go" for Christy in the ICU and for Rachel, Sharka, and Stefanie in Unit 13K of the Kohler Pavilion? I was very worried about many things (pain, peeing, and passing gas to name a few - but you already knew that if you have been folowing this blog over the past couple days). They handled everything with empathy and confidence. Over the past two days at 13K, I especially felt like Rachel, Sharka, and I were a team working to clear the pain med delivery and peeing hurdles.

[More details necessary, I know. In the operating room, pain suppression and anesthesia drugs were delivered via an IV placed in my right carotid vein. This vein is used because it is big enough to handle any drug they need to use, especially those that might burn the inside of a smaller vein, and in case I needed a blood transfusion (not all that unusual for liver surgery, but I did not need one). On my right forearm, I had two additional IVs - one in an artery and one in a vein. The arterial IV was used for lab draws, and the venous IV was for pain suppression. We were removing the arterial IV in my forearm, but ran into some tape issues and had to also remove the venous IV. This was OK because I still had the one in my carotid vein. I then had another IV placed in my left arm, and we removed the carotid vein IV. Then, that one started to have issues, aand we accessed my PowerPort. Things are pretty good now, except that we seem to need to flush that line every few hours (blood draws, mainly, but also for a magnesium drip later this aftenoon. Whew!]

That's enough. Big shout-out to nurses and their assistants. Amen.

In the category "granted, taking things for..."

2011-06-02T05:11:00.000-07:00

I am back in the blogging saddle, as they say, and am ready to profess some profundity. Really, I'm ready. Ummmm... So where is the creative promise - that "I'm the driver here" feeling? I guess that should not be taken for granted. OK then, Ed, enough with the cutesy. Let's go.

I have been told that there are two things (at minimum) that I must be able to do before they will consider releasing me back into our urban wilderness: pass gas, and pee. These are straightforward and automatic processes, and I take them for granted. Somewhat unbelievably, I am struggling with these simple bodily functions! And, just to complicate things a little more, I am told that I must work to remain hydrated (water and Gatorade). Input is not equalling output and that creates a problem. The solution so far has been to insert a temporary catheter every six hours. The passage of gas - which many of you can attest has not been a problem in the past - is not even on the radar screen... Once we nail the bladder issue, it's on to flatulence. :-)

My strength is good, probably in no small way due to the Salem Hospital RISE fitness exercise classes with Dave and Nancy. But the hydromorphone pain killer that I can self-administer may be masking things... (Has anyone noticed that I use ellipses a lot?)

OK - I need ro make this a short posting, since I have dozed off five times already while typing with two fingers. (But not before having three vials of blood drawn for three lab tests.. Geez..)

Update 2

2011-06-01T12:43:00.000-07:00

(Karen posting again)

Today Ed moved from the ICU to the surgical oncology floor where he has a very nice private room at the end of a long quiet hallway. This is a huge improvement over the ICU which was subterranean and under construction. He is still pretty doped up on dilaudid for pain and not able to chat for long or really even focus on email or facebook. I am reading your replies to him in between his catnaps. He would prefer not to receive phone calls so that he can sleep.

One unexpected development came last night when I picked up a voicemail from Ed's doctor in Salem, telling him that the cultures from his ingrown toenails (please see his May 22 entry if you missed that little distraction) tested positive for MRSA which is a pretty nasty bacterium. The short story is that they put him on antibiotics and he is in isolation until they decide he is not infectious. That sounds horrendous, but it basically means that everyone in contact with him has to wear a gown and gloves. Luckily the touch pads on the iPhone and iPad work while wearing lovely purple nitrile gloves!

We expect him to be at OHSU through the week end. He thinks he can handle a few visitors starting tomorrow for very short (15 minute) visits, but you might want to check with me first to see for sure. And he promises to be more social once he gets home. He will be very tired for a while, even once he is over the immediate post surgery issues, because his body is working really hard to regrow his liver.

Thanks again for all the love. It means so much to us and is most definitely a critical part of the healing process.

Surgery Update

2011-05-31T14:16:00.000-07:00

(This is Ed's wife, Karen, blogging)

Ed has just come out of the operating room and is in the recovery room and doing fine. His surgeon reports that the surgery went very well. He was able to remove both tumors safely. Ed will go to the ICU for the night and then will be in the hospital through the week-end. I'm sure he will be back on the blog in a day or so. Thanks everyone for the good wishes, karma, prayers and positive energy you sent his way.

Whew!

Ain't it a glorious day...

2011-05-30T07:02:00.000-07:00

Tomorrow is the big day, and 8am is the appointed hour, when my liver gets temporarily smaller and I learn more about my tolerance for anesthesia medications and pain suppressants. We are taking yet another step along the infinite wheel of time and I am glad this continues to move forward.

I have been thinking about a lot of time-dependent things these days. Like knowing when some project is finished enough to be done - brownies and cupcakes have instructions about the length of time to bake, but they are couched in terms of a toothpick inserted and withdrawn "dry" to be the real measure. We all know what underdone cupcakes and brownies are like - really gooey on the inside. Some folks actually that like that kind of treat, but they too know when to stop baking by the toothpick-insertion test. And no, just to be clear, I am not suggesting that anyone poke me with a stick to see if I am done! It is just that sometimes we are not exactly sure when something is done, until we see some evidence.

I am not sure what evidence I need or will receive related to this cancer journey. CT scans were clear and encouraging for three full years, and then we noticed a significant bump in an antigen that marks embryonic cancer activity and the cancer roller coaster fired right back up again (or maybe we were always on it, but in one of the slow spots?). After this liver resection, I know that I have more chemotherapy, and fully expect a routine of follow-ups and scans for the coming years. But I am beginning to appreciate the mental and spiritual aspects of "being done" more and more. Not "being done" as in giving up - "being done" as in finishing with the cancer itself. I am relieved to report that nearly everyone that I know has promised to sending healing energy my way (in some form or another), and I believe that this is immeasurably helpful to me, to our community, and to the world. Perhaps the power of the mind really is our greatest untapped human resource - but that is hardly a remarkable or previously unstated sentiment.

The other night, impromptu, we had a small party at the house to "take Ed's mind off the surgery." At least 50 people showed up, dear friends from all walks of my life in Salem (and beyond). We laughed and mingled, and ate and drank. It became a kind of elaborate dance for me - greeting folks as they arrived with food and drink, trying to have a conversation with as many as possible, looking out for kid-level activities so that they too would have fun, and finally getting hug after hug from everyone as they were leaving. Real hugs - the kind where neither wants to let go too soon. It brings tears to my eyes just writing that down. Thank you, everyone.

Mary Poppins is one of my favorite fantastic musicals. Endearing story, catchy songs, brilliant imaginings. Thank you P. L. Travers and Walt Disney, for inventing a magical world where everything works out in the end.

"Ain't it a glorious day, right as a morning in May, I feel like I could fly. Have you every seen the grass so green, or a bluer sky?"

-from the lyrics for "Jolly Holiday" (Richard & Robert Sherman, 1964)

What a week...

2011-05-22T21:11:00.000-07:00

Wow.

Last Monday evening (5/16), I paid a long visit to the emergency room due to gastrointestinal distress (painful gas and diarrhea) that had us and my oncological team worried about bacterial infections and suppressed immune systems. After several hours, it turned out to be just that - GI distress and gas. But we were quite concerned about the possibilities related to my scheduled surgery, and were happy to be overly cautious. I was (and am) quite focused on getting to next Tuesday (5/31) for my appointment with a surgical team and their scalpels. It was also good to find out that I did not have "Clostridium difficile", also known as "CDF/cdf", or "C. diff", which is a species of Gram-positive bacteria of the genus Clostridium that causes severe diarrhea and other intestinal disease when competing bacteria in the gut flora are wiped out by antibiotics. This would have caused me to be prescribed a very strong antibiotic, and may have sidetracked surgery.

So, fast forward to Friday, when I am meeting with a podiatrist to help me understand the painful toenails (large toe on both feet, and second toe on my left foot) that had been going on for several weeks. I thought them to be a side effect of the Erbitux/cetuximab treatment that was also causing my acniform rash and extra-dry skin and had been applying antibiotic ointment to them, but it turns out that I had developed ingrown toenails on all three toes simultaneously (and that the triple antibiotic ointment was making things worse)! So, said podiatrist quickly numbs those sorry toes with lidocaine, and then takes out giant toe scissors and chops out 1/8-inch sections of each toe - all the way down to the base of the nails. Bleeding ensues... as well as the application of a dollop of bacitracin under a large band-aid for each toe. "You should be able to walk around now, just keep a dry band-aid on them until they stop bleeding. The pain will now be noticeably reduced." Sure enough. But seriously, three ingrown toenails at once?!?

Then, this morning (Sunday, 5/22), as I am finishing a brief shopping trip, I quickly develop a pain in my right middle back that is incapacitating. It went from what felt like a muscle twinge to agony in about five minutes, and I was barely able to negotiate the short drive home. I was soon writhing in pain (on the couch, the floor, everywhere) trying to find relief. My wife was a saint, arranging for our daughter and getting ready to call 911 when I told her it would be faster just to head straight to the ER (again). After a speedy check-in, I was hooked up to some IV meds (toradal, dialadid, and benadryl are my new best friends) and the pain eased. Turns out I was passing my first kidney stone - first both in time (never did THAT before) and in number (apparently the CT scan showed that there are three other stones in my right kidney). Gee - that is such nice news. But at least I now know what it is and that the pain does pass even if it is hardly tolerable. AND I now have on-hand pain drugs that are to be administered at the first sign of a repeat performance. Not looking forward to that so much.

But the most amazing thing is that none of those events seem to be getting in the way of next week's surgical intervention related to my liver mets. Unbelievable. And as a bonus from today's visit to the ER, I now know that the liver tumors are reduced even further (to a little over 2 and 3cm in length, down from original sizings in the 6+cm range). Some sunshine in an otherwise gloomy week. :)

Peace.

In between

2011-05-14T10:49:00.000-07:00

That is my status right now. I am in-between the first chemotherapy round and the surgery to remove my two reduced tumors. The chemo has halted, and I am slowly beginning to look familiar in the mirror, thanks in some part to a knock-out regimen of Prednisone.

(Prednisone is a steroid. Steroids are a group of hormones with similar chemical structures. They are normally produced by your adrenal glands, located on top of your kidneys, and your reproductive organs (ovaries and testicles). Steroids help control metabolism, inflammation, immune function, salt and water balance, development of sexual characteristics and your ability to withstand the stress of illness and injury.

One of the steroids produced by the outer portion of the adrenal glands is called cortisone. It normally helps regulate the body's salt and water balance and reduces inflammation. Introduced in 1955, prednisone is a man-made replica of cortisone. The adrenal glands normally produces an amount of steroids equivalent to about 5 mg. of prednisone a day. When prescribed in doses that exceed natural levels, prednisone suppresses inflammation and can help treat a variety of diseases such as severe allergies or skin problems, asthma, arthritis, ulcerative colitis, and Crohn's disease. Prednisone is also used to help prevent rejection of organ transplants. - from gihealth.com online.)

Since I am on a starting dose of 50mg, I will tell you that it also jacks the heck out of your energy (read, Ed is more frenetic than usual, and has not slept well for the past two nights) and plays havoc with all kinds of other stuff. I am supposed to wean myself down by chopping up the horse pills in the coming days, and hopefully that will put an end to the acniform rash that is on my chest and thighs - as I said, my face is clearing up already.

But there is this other in-betweenness too... the "thinking about major surgery" part. I am both excited and afraid about May 25 and then May 31. On May 25, we go up to OHSU for the pre-operative activities. I get a CT scan and its results (hoping that we find only the two smaller tumors in my liver and nothing else that appeared over the past three months), and then have another consultation with the surgical team. I imagine that this is where I hear about all the potential risks that accompany surgical intervention (like that will cause me to re-assess my decision?!?) and other stuff. Then there is the surgery itself on May 31... consciously deciding to render myself unconscious for several hours while highly-qualified and experienced doctors cut and poke around my abdominal cavity. Unfortunately, I have very clear memories of the post-operative recovery and the potential for excruciating pain. Not something that this boy hopes will repeat this time.

That's all for today. Maybe its time to do some weeding.

That allergic time of year...

2011-05-09T18:03:00.001-07:00

It almost makes me want to break into song...

"It's that time of year, when the world starts to sneeze, every sniff you hear, seems to say... pollen weakness, may your sinuses congest!"

(apologies to the Carpenters for rewriting a verse from "The Christmas Waltz")

This is the time of year when I usually cannot tell if I am coming down with a cold or what. Mild headaches, post-nasal drip (isn't that such a lovely description!), sneezing, sniffles... could be allergies, could be something else? Well, this year my body is so messed up on anti-everythings (biotics, emetics, nausea, etc.) that I cannot tell what the heck is going on with anything. I am sure looking forward to the carefree, simple days when I can wonder if it is a cold or a mild allergic reaction to pollen. Woo-wee!

So, that was all I had on the allergy topic. Sorry if you had hoped for more brilliance there. Alas, I think I used it all up on the song. :)

But, as a special bonus treat for staying with this blog post, I will now reveal that I have a severe distaste for dry skin. Especially dry skin on my feet. And the effect of the drying out on my finger- and toe-nail beds. Oweee! And cracking feet! Give me a break (pun noted)! My right heel has enough cracks to feel like a dry lakebed (you know, where the mud cracks apart and it looks crazy?) And then, on top of the cracking, I have a compromised immune system that barely is keeping up with my day-to-day exposure to germs, and cannot handle all of the skin-cell rebuilding that it takes to heal the cracks. Let me tell you, this is something to WHINE about.

There. Took care of that little public service message from Ed's Cracked Skin, Inc. (the sponsor of today's blog on allergies).

Have a great day. Really. And forget about the allergies. That will surely make them go away, if the quantum physicists are right.

Today at OHSU

2011-05-06T20:12:00.000-07:00

We are now off chemotherapy for the time-being and in the official "get ready for surgery" phase of the adventure. Karen and I met with Dr. Billingsley this morning, and he decided that I am as ready (chemotherapy-wise) as I can be, and that we should get going. That means a CT scan (scheduled for May 25th) so that he can get a detailed look at the position and size of the tumors. Then I will be anesthetized and resected on Tuesday, May 31st at OHSU. I expect to be at OHSU for 5-7 days, and then will be recovering at home for several weeks. Apparently liver surgery is not for wimps. Just for grins (and to chase down any more cancer cells that cannot yet be detected), we will have another six chemotherapy treatments after I have sufficiently recovered from the surgery. But maybe without the Erbitux/cetuximab (if there is ANY justice in the world)...

I am still awfully tired, and do not have enough energy for witticisms or semi-profound connections to the larger world. Sorry about that.

But this is good news, and I am happy to be more in-the-know about my near-future. Now, if the rash, fatigue, and constipation would just ease up a bit. :)

And July 4th is definitely ON!

Blog blather

2011-05-04T20:14:00.000-07:00

So, I am talking to my friend Danielle today, and she mentions that she is catching up on my blog, and that it is so great that I can write my way through this... and I realize that I have not written in the blogosphere for, ummm, a while. Things Must be happening, right? I mean, there's chemo and stuff - and it must be doing something, right? Ed --- are you there?

Yup, here I am. And I have been a VERY BAD blogger. After a little bit of non-blogging, people begin to text and email me directly. And being me, I respond. But then I am tired of talking about the "me" of this adventure, and have not been telling the proverbial world how things are. Well, they just are. I am mostly able to stay engaged in things, though I am quicker-to-prickly than I think I usually am. I have been able to stay with my exercise program (moderated by two excellent trainers at Salem Hospital). I can easily say that I am now stronger than I have been in many years, and have shed 10 pounds. This, I think, is an OK thing (the weight loss) because I am no longer drinking alcohol. There is a nice balance in there somewhere... as in I do not feel the least bit guilty about chocolate ice cream after dinner. :)

But, there are still some side effects that plague me - the fingertips and feet that are splitting open due to dryness, the rash that is most prominent on my face (but also spans my chest, upper arms, and thighs), the constipation, the general coldness, and the fatigue. My poor family has to endure my repeated tiredness and the weary looks that I give them. I am sorry for that.

So, I have now had six full treatments of FOLFIRI, and a total of twelve treatments of Erbitux/cetuximab. We see the surgeon and his team for a consult on Friday morning - and I may know something else after that. Right now, we are in a holding pattern on summer plans - awaiting the date of surgery to make any semblance of a plan for fun and frolicking...

See you after Friday!

PS - RIP to fellow cancer traveler Derek K. Miller. Stage 4 colon cancer. Eloquent blogger. Fellow citizen of Planet Earth. http:\\www.penmachine.com

PPS - Thank you to those of you that patiently awaited a blog update and did NOT contact me by other means. I will be a better blogger. I promise.

Thin skin

2011-04-14T21:07:00.000-07:00

When your skin is dry and flaking all the time, and your face and scalp seem to shed a pound of flesh each day, it does not take too much imagination to think of being thin-skinned. I am pretty sure that, between the weekly cetuximab doses and the twice-daily doxycycline pills, I have never had such dry skin, and I would be surprised to learn that I have a normal number of skin layers protecting me from UV rays and what-not. And then there is the daily ablution and cover-myself-with-moisturizers activities that suck about thirty extra minutes from each day, which is enough to wear off the skin flakes even faster, and wonder how I would handle the daily application and removal of makeup.

But wait, that is not all! In addition to the physical effects of skin-thinning, we have a bonus of general personal prickliness - which I attribute to the fatigue of having chemical poisons pulsing through me on a regular basis, and the burden of thinking about an uncertain future for me and my loved ones. That is more sucky than the skin-shedding, in my opinion.

But enough complaining - on to the latest news! Well, there isn't any latest news. We talked with my oncologist on Wednesday pre-treatment, and she confirmed that the tumors are shrinking (though I had more detailed info than she shared with us) and that my blood work is quite good (though there was a slight drop in my phosphorus levels). She had spoken with the liver surgeon, but was uncertain about the means to decide between two additional chemo treatments (one more after this one) or four additional treatments. It made sense to all of us that there would need to be an additional CT scan, but her experience made her uncertain about getting one after just two more treatments and he had not been clear with her about that. She is checking in with him, and we should know something more soon. I imagine that we will need to take another trip to OHSU for a secondary consult in the near future. In any case, there will be a short (2-3 week) recovery period after the chemo in preparation for the surgery, and then another month to recover from that before we start chemo again. Woo-hoo.

So, working through things and living day-to-day... trying to exercise, trying to stay balanced, trying to remember things as the chemo-brain returns. Just your normal chemo experience, round two.

Preliminary good news

2011-04-07T20:11:00.000-07:00

Today I underwent my first post-diagnosis CT scan. As I have certainly blogged about before, this involves a four-hour no-drinkee period and a one-hour drinkee-the-barium-solution period (which, by the way, has actually progressed from the detestable barium shake to a much-more-palatable barium-laced raspberry kool-aid). The scan was simple, especially with my PowerPort, and I was out before we knew it (with a dose of directed radiation that is hundreds if not thousands of times higher than most of the radiation that the US is detecting from the unfortunate Japanese reactor situation). I am profoundly unworried about the cumulative dosage of radiation that I am receiving intentionally.

But enough with the long-windedness already! I heard from my oncologist's office that the results are good, and that the tumors are shrinking demonstrably. They will confer with the liver surgeon between today and next Wednesday, when we will discuss next steps and so on. I believe that I will have at least one more chemotherapy treatment next week, but today's news means that the first phase of cancer, part two, is proceeding apace.

Thanks to all for the support via prayers, karma, thoughts, and hugs. I am somewhat relieved. :) The anxiety of not-knowing is so hard for me.

525,600 minutes...

2011-03-30T18:05:00.000-07:00

How do you measure, measure a year?

I saw a most-satisfying, amazing, blessed production of Rent on the local community theater stage last weekend. The talent and emotion that poured across that stage was palpable, and I traveled back in time to see people and situations that I had not recalled for 25 years. Truly moving. Several of those friends are no longer with us, and most of them died from the complications of HIV/AIDS that were transmitted through a blood supply that we were blissfully unaware of as a disease vector. I am saddest to recall the endtimes of my Best Man, Patrick Delahanty Clarke, whose energy and dreams were so quickly lost to us.

A year ago, I was pondering the somewhat-bleak future of our economy, especially in state government. I was happily riding my brains out in preparation for several long bike rides, including the 2010 LiveStrong Challenge in Seattle and the Peach of a Century in Salem. I am proud to say that I completely whooped my 100-mile Livestrong ride time of 2009, finishing 90 minutes faster than I had previously done.I rode my first Chilly Hilly in 20 years, rode in the heat of Phoenix with dear friends, improved my time on the Reach the Beach challenge, and once again managed to smash my head (and other body parts) against the pavement without incurring permanent damage - WEAR YOUR HELMET!

We finished a major home remodel, and no one felt compelled to obtain separated living arrangements. We hosted parties for July 4th and for New Years. Darling daughter swam her way impressively through several meets, culminating in Bend, and successfully transitioned to Middle School and adolescence. I actually performed on stage - singing, dancing, acting - for the first time in my life, and enjoyed every minute of it. I loved that time with new-found friends, and was honored that old friends traveled from near and far to watch the production. You are all such a solid part of who I am. Thank you. Really, I could not mean that any more sincerely.

Next week we find out what effect the chemo and Erbitux have had on my two tumors. If the facial disaster is any indication, those chemicals are having the desired effect (shrinkage). I will let everyone know once we know something firm, and the road is yet long. Thanks for keeping me and our family in your thoughts and prayers.

"525,600 minutes... how do you measure, measure a year?
In daylights, in sunsets, in midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
In 525,600 minutes - how do you measure a year in the life?
How about love? How about love? How about love?
Measure in love. Seasons of love."

Lyrics from "Seasons of Love", Rent, 1994

The Roller Coaster Ride

2011-03-26T09:52:00.000-07:00

My favorite ride at the amusement park is the rollercoaster. This does not in any way make me unique, and as far as obsessions are concerned I am in the 'not-even-qualified' column when it comes to rollercoaster-mania. But I enjoy the speed and the gravity swings, and the quick changes of direction. Two minutes of pure excitement.

This other thing that I am doing is a distinctly different kind of rollercoaster ride. Every week I am willingly subjected to an infusion of something - either the FOLFIRI + Erbitux/cetuximab, or just the Erbitux/cetuximab. I actually feel the best healthwise just before the bi-weekly FOLFIRI treatments, due to the morning hour spent exercising with other cancer patients/survivors. I kinda think of that as getting into the rollercoaster car. Then there are several hours of accessing my port, drawing blood to see if my system can handle another dose of chemical badness, talking to the oncologist about bloodwork and a myriad of symptoms, and then actually sitting in a recliner in a room for the 4 hours of infusions (beginning with a benadryl and dexamethasone - one makes your drowsy and the other jacks you up.) This would be part of the slow uphill climb section of the ride, and I know that each ride lasts two weeks.

After the benadryl/dexamethasone, I get an hour or so of the cetuximab, and then there is an hour of observation (to see if I have a bad reaction to the cetuximab - which apparently can happen anytime, even if you have already had seven treatments of the stuff). During the observation hour, I receive an hour-long infusion of irinotecan, a big dose of leucovorin, and then a bolus (injection that is literally pushed into my port line via a large syringe) of 5-FU. And the final piece is fitting me with the 48-hour 5-FU pump. OK - we are nearing the top of the rollercoaster ride, and I need a nap. Hang on!

Oh, wait, you need to hang on for 48 hours. And listen to the pump's slow metronomic whirr-bzzt while you go about your daily business. I must keep the access port clean and dry (showering is a real production involving waterproof tape, Saran Wrap, and torturous chest hair removal each day). Once I finish my morning ablutions, I have this nifty elastic pocket (http://www.PoppyPocket.net) that helps me be mobile and relatively comfortable.

Still hanging in there, in the rollercoaster car? Well now I have to go back to the clinic to get "de-accessed" and it is late Friday afternoon. I managed a couple of days at work, and ate some stuff that I cannot remember the taste of, but now the ride really begins. After the pump is disconnected, I begin that fast descent into a fog of fatigue and gastrointestinal confusion. The next two days are virtually horizontal for me, and my energy evaporates. I am tired, both physically and in spirit, as my body tries to figure out just what is happening.

To combat the side effects of everything, I take a combination of antibiotics, stool softener and anti-heartburn pills, and Vitamin D. I watch what I eat - so as not to inadvertently encourage constipation or diarrhea, and I constantly apply some variety of lotion, antibiotic, creme, aloe, and moisturizer to my face, scalp, arms and back. My fingertips are splitting due to the dryness, and I am a whiny pain to be around, in my opinion.

But the ride gets better! Some of the time I am really excited, and energized for a bit, before I need a nap or down-time. By Monday and Tuesday of the week following FOLFIRI, I am feeling a bit more normal, but then on Wednesday I get another dose of Erbitux/cetuximab. This only takes about three hours, but it is a reminder of the skin/scalp side effects, and I have to go back to the clinic and sit in the chair to receive it. But even with the slow hiccup that this represents, the ride is winding down and by Friday I am feeling pretty good. There is a Saturday through Wednesday morning respite, and then the ride begins again. Woo-hoo!

After the treatment (should my blood work allow it this next Weds), we will schedule a CT scan to see how the tumors are responding to the chemo-therapy. I am both nervous and excited to find out what is happening inside my liver. The emotional rollercoaster is far more challenging than the physical one, and it is a ride that I am on mostly by myself. But then, if you think about it, all of our life journeys are first and foremost an individual one. Thank you one-and-all for witnessing, and supporting, mine.

Disconnect-Ed

2011-03-18T17:15:00.000-07:00

Another bi-weekly infusion of tumor-destroying chemical cocktail has officially ended. For reasons that befuddle and perplex me, this time through was less predictably crappy... but then I have not given my body enough time to realize it is no longer "under the pump" either.

It was a furlough day for me today - which means I am not supposed to think about work (since I am not being paid, even though I am a salaried employee, and am officially on an hourly non-wage today). So I took advantage of the unpaid free time to have a marvelous late breakfast of corn-meal pancakes, cooked and served by my staunch supporter Alison. I then met some friends for a hearty discussion of all-that-is-possible in our world, followed by a movie-date with my wife - The Adjustment Bureau starring Matt Damon and Emily Blunt. Then I walked to the hospital to get my pump disconnected from my port and discuss all things dry skin.

The movie is based on a Philip K. Dick novel, and it weakly confronts the notions of free will and determinism. There are a lot of mysterious "hat men" that slightly adjust events to get the world (which clearly cannot take care of itself) to work according to the "Chairman's" master plan. I am sorry, and I loved the acting, but I cannot abide by this cop-out. The premise would have us believe that coincidences are often less-that-that, and that some group of do-gooders (all men in the movie) are taking care of things. Maybe we should just kick-back and enjoy the ride... I cannot imagine being more disconnected than that.

Don't get me wrong. I know it's a story. I know it's fantastical. And anyone who knows me knows that I LOVE fantasy and science fiction. It's just that this one struck a chord with me today. I do not want to feel disconnected. I want to feel like my decisions are mine, and that they make a difference somehow (or someday). You know?

Several parts of my morning are missing. Have you seen them?

2011-03-16T07:07:00.000-07:00

This text message I received in the middle of the afternoon on Monday. I had escorted a dear friend to her very first colonoscopy (which was given the "all clear - see you in ten years"). This was a first for me, too. You know, the part where you go with the patient and basically sit in the waiting room for 90 minutes while the parts below the patient's belt are made visible by way of modern optimal technology and some middling goods chemicals (versed and fentanyl).

Well, it's not all that exciting until the patient (dear friend that she is) comes out of the recovery area looking ashen and ready to hurl into one of those plastic drawstring clothing bags. We are escorted down to the van, where the escort then says "if you don't feel ready to go home, we can go back up to the recovery room." My silent glare was accompanied by a "no, I'd rather go home," so we managed to leave the hospital. I was instructed "this had better be the smoothest ride you have ever driven."

Fast-forward several minutes and we are inside the house, slowly walking upstairs to the bedroom, and I am asked "Am I clear?" I quickly respond, "Yes, everything is fine. The doctor wants to see you again in ten years." Finally into bed, my hungry patient says she wants some tea and toast, which I go to start. I come back and she asks for the pictures of the results, which I hand to her and again answer the "Am I clear" question. I receive instructions on who to immediately text (close family, by name). But before I even go to retrieve the toast and steeped tea, I am once again asked "Am I clear?" Uhhh... yes, still clear.

Tea and toast are delivered to the bedstand. She asks to see the pictures again, and I say that I gave them to her. "No, you didn't." OK - now the search is on. I walk around the room, I look in the kitchen and office (all places I might have wandered to and set the pictures down). Nope, they are on the floor under the bed, where they must have slid after falling out of her hand. I get her a small bowl, since she is still feeling puke-y, and the kitten promptly curls up in it and plays with its tail.

I need to go to work, so I get changed and head toward the door. She says thanks, and asks, "Am I clear?"

"Yes. Do you remember that you have asked me that exact question four times?"

"Yes, but what is the answer?"

"All clear - see you in ten years." This is the diagnosis that everyone wants to hear. We are thankful, and cold toast is very tasty (or so I am told!)

"Why are there so many, songs about rainbows...

2011-03-08T19:16:00.000-08:00

... and what's on the other side? Rainbows are visions, and only illusions, and rainbows have nothing to hide."

I find myself straining to see the rainbows these last few days. I am having some acid reflux to accompany my general weariness and gut-sucky feelings, and that makes the idea of eating less-than-appealing. My exercise class on Monday was energizing and eye-openingly hard - I felt light-headed several times after the simple exercise sets (side squats, dead-weight lifts of 15 lbs, normal squats) and the balancing exercise made me acutely aware that my tingling feet and fingers are back.

And a lot of things just do not feel as important as maybe they once might have been. I am primarily talking about taxes - even though I am sure we are due a refund this year (again). I am quite tired of the pieces of my face that are continuously flaking off everywhere, and the accompanying feeling of sunburn. Let's just say that the weekly infusion of cetuximab (Erbitux), while not nearly as deadening as FOLFIRI, is no longer simply a task to endure. I now have a growing sense of dread surrounding it too.

Where is the optimism, Ed? Where is the can-do, get-through-this-too attitude? I am not sure. Last night I was really sad. Sadder than I ever remember being. I am glad to say that today was a ton better, and that I am not wallowing in self-pity. Hope still rings eternal, but the tone of the ringing has changed a little. I have to find a way to see the rainbow through the storm, and know I can do it. These last few days, though, have been hard.

I used to love to sing "The Rainbow Connection" in Kermit the Frog's voice. In fact, I think I could still pull it off today. It's a great song. Thank you, Jim Henson, The Muppet Movie and Paul Hamilton Williams, Jr.

"So we've been told and some choose to believe it, I know they're wrong - wait and see. Someday we'll find it - the rainbow connection - the lovers, the dreamers, and me."

Whirrrrrrrr... bzzt

2011-03-05T15:39:00.000-08:00

That is the sound that precedes the few drops of 5FU being pumped into my chest each minute for two days after an infusion of FOLFIRI and Erbitux. A semi-constant reminder of what is going on here - the purposeful interruption of cell division in my body. It is particularly unfriendly to my gut lining (food processing zone), bone marrow (blood component factory), and those nasty tumors in my liver (that is the hope, anyways).

Whirrrrrrrr... bzzt.

"5-FU is one of the oldest chemotherapy drugs, and has been around and in use for decades. The drug is believed to function as an antimetabolite (it interferes with metabolites, which aid in processing nutrients). After intracellular conversion to the active deoxynucleotide, it interferes with the synthesis of DNA by blocking the conversion of deoxyuridylic acid to thymidylic acid by the cellular enzyme thymidylate synthetase. Flourouracil may also interfere with RNA (ribonucleic acid) synthesis. It is preferentially taken up by actively dividing tissues and tumors after conversion to its nucleotide." That info is compiled from several websites, and is at the extreme edge of my recollection of biology and chemistry. But note that this function is "believed", not known. Hmmm...

Whirrrrrrrr... bzzt.

"Irinotecan (a semi-synthetic derivative of camptothecin) is much more complicated to describe, but it is an antineoplastic agent (it works to prevent the growth of new plasms), that acts as a specific inhibitor of DNA topoisomerase I." It is a replacement for the oxaliplatin that I received in round one of this adventure, since the neurotoxic effect of oxaliplatin is cumulative and is a gift that keeps on giving. As I understand it, more oxaliplatin would mean permanent neuropathy - and we don't want to go there.

Whirrrrrrrr... bzzt.

Erbitux (cetuximab) is my least-favorite treatment this time, though the 5FU is actually nastier. "Erbitux (cetuximab) is a recombinant, human/mouse chimeric monoclonal antibody that binds specifically to the extracellular domain of the human epidermal growth factor receptor (EGFR). Cetuximab binds specifically to the EGFR on both normal and tumor cells, and competitively inhibits the binding of epidermal growth factor (EGF) and other ligands, such as transforming growth factor–alpha. In vitro assays and in vivo animal studies have shown that binding of cetuximab to the EGFR blocks phosphorylation and activation of receptor-associated kinases, resulting in inhibition of cell growth, induction of apoptosis (intentional cell death), and decreased matrix metalloproteinase and vascular endothelial growth factor production." Another mouthful - but basically this one tells cells to stop growing and start dying.

Whirrrrrrrr... bzzt.

Each time I hear that sound, I am reminded of what is going on - even though it is only 5FU that is being pumped at that moment. The side effects of FOLFIRI plus cetuximab are too numerous to list, and there are drugs that counter those effects (creating a biochemical soup inside me that is too complicated to describe or even think about). Right now, the lovely side effects from Erbitux - acneform rash (looks like a rash with serious acne in it), pruritis (itching), and loss of appetite - are the worst. I have these all in spades, and the flaking off of skin is a general annoyance too. Luckily, the Erbitux will end when we have decided that it is time for the liver resection. Maybe I will still have some skin left on my face. :) And I know the fatigue only lasts five days...

Whirrrrrrrr... bzzt.

Exercises

2011-03-02T15:20:00.000-08:00

Hard to believe that another 10,000 minutes have passed by, but that is what happens every week. I am back in the chemo chair at Salem Hospital, dripping my way through another 800 mg of Leucovorin, 800 mg of Fluorouracil, and 360 mg of Irinotecan. Should only be another 100 minutes, according to the pump rate and remaining volume. Then I will have a bonus 2880 minutes of Fluorouracil delivered via portable pump (whirrr-click every 75 seconds... only 2,304 clicks!). You should just see my awesome Poppy-Pocket pump holder - all elasticness, with a couple neat pouches for the pump and tubing. Fits under clothes and everything. Too bad it didn't come with Ginzu knives. :)

But seriously, so far the worst part of my treatment regimen seems to be my flaky/itchy/red face, a cold nose (though, remarkably, it only seems to be cold on the inside and not on the flaky-skinned outside), and the interminable 2,304 clicks from the 5-FU pump. Go figure. I have taken a couple of recliner-induced naps, and feel generally decent right now.

This week, I registered for and began an exercise class that is especially designed for cancer patients and survivors. It is taught/overseen by my friend, Nancy, and I have enjoyed seeing her again (though she said that it would have been OK with her to get together without the cancer recurrence). There are ten exercise stations (so to speak) and we use weights, stepping boxes, resistance bands, and lifting benches to maintain and strengthen major and minor muscle groups. The objective is two-fold: (a) keep as much lean muscle mass as possible during and after chemo, and (b) keep everyone's mind and body engaged in healthy activity that will help with recovery and general strength.

Now, some of you may know that I have returned to a modest level of bicycle fanaticism over the past three years (OK - maybe it is more than modest). So I figured I would probably be in OK shape for these exercises. Well, let's just say that I have needed to be more of a generalist and less of a specialist in the training department, and leave it at that. :) My trainer is totally awesome.

The exercises that are the toughest for me are: (a) side squats down the hallway and back, and (b) simple balancing (where we each stand on one foot and then lift and sweep the other foot in a semicircle from front to back, or lifting one leg, extending it the the side, and then moving it across in from of the other leg). My thighs were burning during and after those two, and they are supposedly my strongest muscles from riding. Sometimes we just kid ourselves about where our strengths lie, yes?

I have also been thinking about mental exercises - you know, the "positive thinking optimistic future" ones. After Chemo, Part II - Round One two weeks ago, I will admit to a small abandonment of my general positivity. But that has turned around. Yesterday I was filled with love and support from professional friends as they met in conference and I was "listening in" on a conference phone. I missed seeing them, but felt like I was there amidst the laughter and serious discussions of the present and future of NSGIC (National States Geographic Information Council).

Exercise is good for your body and for your mind.

pay it forward

2011-02-20T17:18:00.000-08:00

We watched this movie again on Friday night. It has a kind of feel-good message, and stars Helen Hunt, Kevin Spacey, and Haley Joel Osment (with supporting roles for Jon Bon Jovi and Angie Dickinson). In case you haven't seen it (or do not remember it too well), Kevin Spacey plays a jr. high school social studies teacher somewhere near Las Vegas, Helen Hunt plays an alcoholic single mother working two waitress-ish jobs related to casinos, and Haley Joel Osment ("I see dead people") plays the precocious kid with lots of woeful looks and some spunk. Teacher challenges kid to change the world; kid invents the "pay it forward" pyramid scheme where everyone tries to help three other people do something big that they can't do themselves - thereby improving the world.

So the child star picks a homeless heroin addict, his social studies teacher (who was abused by his father both physically and emotionally), and another student that is being picked on by bullies at school. Then these folks are supposed to pay his help back by helping three other people. You get the idea. At one point he starts to manage the "pay it forward" actions of his teacher... pretty twisty, plot-wise. Of course, there are all kinds of skipping-through-time adventures, and somehow Los Angeles, a bridge on the Pacific Coast Highway, a smash-and-grab thief, his grandmother, a high-powered lawyer, and a small-time journalist play into the script.

Great movie synopsis, Ed, what's your point? Well... here we are watching this almost comical Hollywood over-dramatization, and all I could think about was the illogical details. I mean, this kid is riding his bike all over Las Vegas and picks a homeless heroin-addict out of the crowd, invites him into his Mom's double-wide for a shower and some Cap'n Crunch, and nothing seriously bad happens? And then, the climactic end of the movie is a cheap rip-off of the knife fight in West Side Story, with our child-hero dying of a small knife wound to the lower abdomen? Where are all those super-skilled medical-types when you need them, eh?

It didn't (and doesn't) need to be so. That movie and its message could have been delivered less-forcibly (and just as meaningfully) without the improbabilities. We can all be generous to the people that help us through our difficult days without the super-drama and the spotlights... and we should. I have already (again) been struck by the generosity of spirit and outreach that we have received, and hope that I have enough time and energy to help as many others once this chapter of crap is concluded. And the ending that I am working on does not have all that drama and hype.

Update

2011-02-17T20:51:00.000-08:00

Well - this is not the same chemotherapy experience that I had the first time, but there are marked similarities. I feel like the chemo has hit me harder and faster this time than it did in 2007. Perhaps it is the Irinotecan? Or maybe the Erbitux/cetuximab? Or maybe its just that I am an older dude. Whatever. It translated today into an early departure from work and a three-hour nap in the afternoon. I have had a general level of tummy upset/mild nausea since I started taking the Doxycycline on Monday morning (pre-treatment). And I am already feeling like I am cold a lot (that may be coincidental with a sudden dip in the weather/temperature.. we are supposedly having a winter here after all).

So far so good on the primary side effect from the Erbitux/cetuximab - upper abdominal/facial rash that resembles acne. According to the oncology nurse, we will know one way or the other after the second Erbitux/cetuximab infusion next Tuesday. I am feeling pretty generally stoppered up in the waste-elimination department, and we are trying to gently deal with that using senna (ducosate sodium). More news as it develops. :)

I am still enjoying the fun memories from Orlando and our impromptu trip to Universal Studios/HarryPotterWorld/Cape Canaveral. While I admit to a certain fixation with fantastic worlds, this trip was especially fun because I also got to hang out in Margaritaville every night, listening to Jimmy Buffett songs and thinking about boat drinks. We had a great time.

Infuse-ED

2011-02-14T18:06:00.000-08:00

Well, most of round one is under the proverbial belt. For those of you playing along at home, for the starter course that means: 12.5 milligrams of Diphenhydramine HCl (basically Benadryl, an antihistamine), 40 mg of Famotidine (basically Pepcid, an antacid), 12 mg of Dexamethasone (steroid known more casually as Decadron), and 250 micrograms of Palonosetron (known to medical types as Aloxi - an anti-nausea med). Some combination of those four drugs also controls my desire to barf this poison out of my stomach (even though we know its in my bloodstream, my evolutionary response thinks I must have eaten something rotten and wants to get rid of it before it poisons me... we are SO evolved). Those drugs were infused over the first hour or so.

For the main course, we have: 800 mg of cetuximab (aka Erbitux, a biological agent designed to interfere with cancer cells' ability to grow), 360 mg of Irinotecan coupled with 360mg of Leucovorin (Irinotecan inhibits all cells' ability to divide, and Leucovorin is a D-vitamin that helps the Irinotecan bind to the cells), and then 800 mg of Fluorouracil (5FU, similar to Irinotecan in its pharmacokinetics, and the real workhorse of this chemical soup). This part took an additional 2 hours of intravenous connectivity. I am also attached to a small chemical pump that will deliver an additional 4800 mg of 5FU into my bloodstream over the next 48 hours.

Whew. That was a mouthful. I am now sitting on a leather mission chair with a fleece blanket and a kitten asleep in my lap, trying to warm a cold pair of feet and a nose, with a mug of lukewarm Good Earth tea, and this laptop. The 5FU pump is whirring its little mechanical tune every 75 seconds, my heart is racing from the steroids (dexamethasone), and I am fatigued from the 5FU/irinotecan/cetuximab cocktail. Weary, but not sleepy. Jittery like too much caffeine. Trying to remember the details of a nightmare that I had worked so hard to forget...

Peace.

Autopilot?

2011-02-09T17:19:00.000-08:00

So, these days I see a metaphor for living every time I turn around. I am certain that this is part of the reality-check that comes with the recent discovery of my liver mets, but I cannot help but write about this one.

On our plane flight from Atlanta to Orlando, the three Arabi managed to get seated together near the rear of a not-close-to-full plane. Then, right after the cabin door closed, we were allowed to change seats if we wanted. All three of us quickly took our own window seats. About five minutes or so after take-off, the plane seemed to crest (you know the feeling - when it changes from climbing to descending - like on a rollercoaster) and then suddenly seemed to be descending. The engines were not laboring as hard as they usually do while climbing. We began a turn to the left, and the bank of the turn became more noticeable.

In the span of a few seconds, many thoughts can go through your mind. I looked past the woman that had taken the aisle seat in my row to see Karen tell Julia to join her back in her row. I saw concern in their faces. I figured we had a technical problem, and were heading back to Orlando, and hoped that the elevation we had was sufficient to make it back. I wondered about fuel-loads, and whether we could safely land at the fueled plane weight. I wondered about dumping fuel. I wondered about a hundred different scenarios, and some of them were not pleasant.

Then, we banked back to the right, the engines came back up to their normal, climbing throttle, and we appeared to be headed up again. Moments later, the pilot announced that we had avoided a descending plane that was nearby, but close enough to set off the autopilot's warning. We had not been in any real danger. He announced that he thought we would still be able to arrive on time.

But the autopilot was not yet done with us... we had several intermittent "crests" and some strange plane jiggles that were not quite the turbulence that I associate with air travel. Then, the pilot announced that they were having some trouble with the autopilot, and that they were turning it off to fly manually. What a concept - to actually have a human drive the plane. I experienced some relief that we were in the hands of competent professionals and would have a nice Florida vacation. There were no additional mishaps on the short flight to Orlando, and we arrived early. Go figure. The humans had performed at least as well as the autopilot might have (if it had been on its proverbial game).

Great story, and very good news for the Florida vacation and the Arabas family... but the metaphor? Well, despite my commitment to exercise and attempts to eat well, I have been on autopilot for at least a couple years now after my first round of colon cancer. My autopilot was a team of doctors (but primarily my oncologist) looking out for me, and the warning bells began sounding in Mid-January. So this human is now back in control, and he is setting course for success starting next Monday. But it made me wonder if there are areas of my life that deserve closer attention, that I have been unconscious about. Perhaps our autopilots need to be re-booted every so often? Just thinking...

Rottweiler

2011-02-06T21:32:00.000-08:00

So, today I went out for what will likely be my last bicycle ride for several months. There was a modest wind, but the sun was out intermittently and it wasn't wet or too cold. I was joined by a friend that I have been wanting to ride with for about a year, and that was in itself a satisfying reason to get into the saddle.

We did not go especially far, and I thought that the route that I chose was a good mix of rolling hills and flat sections. It ended up being about 25 miles, and I enjoyed the exercise and the company. My familiarity with the route was helpful, but one event really shocked me. We rode up a short steep hill, with a sharp right turn at the top, and just as we were starting down the other side, a large Rottweiler charged out of a driveway on our right straight toward me.

It happened so fast all I could do was yell, and then it literally plowed headfirst into my right calf. It was barking loudly, but hit me with its head and then fell over onto its back, stunned. Somehow, the only thing that I experienced was a slight wobble and my chain popped off the front crank. As I had started downhill already, I coasted until the next little rise slowed me to a stop - far beyond the apparent interest of the dog. I put the chain back on, and we continued on our way.

My friend saw all of this from slightly behind, and could not believe that nothing else happened to me or the bike. I too wonder how many amazingly lucky details aligned so that I was not hurt in any way, nor was my bike damaged. If the dog had chosen to attack my friend instead of me, it might very well have ended very differently (she is smaller than me, and was not going very fast since she was behind and had not started down the hill yet). If the dog's mouth had been open, I might have suffered all kinds of bloody damage - with untold ramifications for our family trip to Orlando and for chemotherapy. And if the dog's big head had hit ANY OTHER PART OF MY BIKE, I would certainly have fallen and...

So what... Well, I am thinking that this event is analogous to some lousy cancer events over the past several years. First, there was a colonoscopy that discovered a tumor (which was a much bigger deal in the end than we thought). Then there was a colon cancer study that I qualified for, which required more thorough treatments and more frequent follow-up but connected me with great doctors and caregivers in Salem and Portland. And now an elevated CEA level that allowed us to detect liver tumors long before they made their sorry presence known via symptoms. First the diagnosis of cancer andnow its metastasis are like a crazy dog charging at my body - but with fortuitous outcomes.

Rottweilers have gotten a bit of a bad rap in the US from the media and in movies. From Wikipedia - "While still used in herding, Rottweilers are now also used in search and rescue, as guide dogs for the blind, as guard or police dogs, and in other roles. The Rottweiler is good-natured, placid in basic disposition, very devoted, obedient, biddable and eager to work. Their appearance is natural and rustic, their behaviour self-assured, steady and fearless. It has an inherent desire to protect home and family, and is an intelligent dog of extreme hardness and adaptability with a strong willingness to work, making them especially suited as a companion, guardian and general all-purpose dog." The one I encountered today was doing its best, in the way it understood. I do not blame the dog (though I would like to have a short chat with its owner).

That said, I feel like I am blessed with a team of Rottweilers.

Light and tunnels and light

2011-02-05T07:56:00.000-08:00

I received all kinds of news this week - news that showed us all what is going on inside me and illuminated a path forward. It all started with Monday's official confirmation that there do not appear to be any bone metastases, and all we need to concern ourselves with is the two liver tumors. So, Tuesday was consumed with outpatient surgery to re-implant a catheter device in my chest that will make it easier (for all) to give my chemotherapy, draw blood for tests, and insert contrast for the many CT scans that I expect to have. For reasons both medical (no existing scar tissue in the vein near my clavicle) and aesthetic (now I will have matching scars on each side of my upper chest), we went with the left side this time. I am not sure that anyone really want to see the yellow green bruise below the port, but Dr. Durning did a fine job!

Wednesday was intended to be a recovery day, with Vicodin making me quite a jolly and nearly pain-free fellow. But, double-bonus for Ed, an appointment opened up in the afternoon with the surgical oncologist at OHSU (Dr. Kevin Billingsley)! Karen drove me up there and we talked to three different doctors (an intern, a resident, and the surgeon) about my case. So many details were reviewed, and reviewed, and reviewed. They wanted to be sure that we talked about the previous cancer treatments, and the current situation, and the risks, and the prognosis. Highlights: (1) no need to do a tumor biopsy, as the information gained would not change the treatment plan at all and we will get that information from the tumors themselves after they are removed; (2) exercise (especially cycling) is good for my well-being during chemo, and should be pursued - but no competitions; (3) chemo will probably be 3-4 months, to get the tumors smaller prior to surgery; and (4) pre-chemo family vacation to Orlando is a good idea.

Thursday was a quiet day, and I enjoyed taking Julia to swimming practice. She really is a good swimmer, and her exercise has a calming influence on all of us. :)

Friday, then, was my follow-up meeting with Dr. Tiffany. She was happily surprised that we had seen Dr. Billingsley, and we discussed all of the details of everything that is going on. I received good news that my genetic markers indicate that I am a candidate for cetuximab (a biological agent that blocks epithelial growth factor receptors on tumor cells - and this helps to discourage their ability to grow). Key side effects are rash (usually on the torso and face - looks like acne!) and diarrhea. Both of those effects will be eased by using Doxycycline and Imodium. The cetuximab will be administered every week, while the FOLFIRI (5-FU, Leucovorin and Irinotecan) are administered every other week. We have many other drugs to manage side effects - maybe I will post about that later? And all of that chemical fun begins first thing on Feb 14.

One last detail that my oncologist is working on has to do with my slightly elevated calcium levels. Since it was not linked to bone mets, she consulted an endocrinologist to learn that I may have a very mild case of hyperparathyroidism. Nothing to worry about now, and the medical indication is to follow it closely with regular blood tests. Well, wouldn't you know it but I have a BUNCH of those scheduled over the next several months.

So, light and tunnels and light. Right now we have a lot of information that explains the blood test results, the CT, and the bone scan. We think we understand what is going on inside me, and we have a solid action plan. But I also find myself feeling like I am going into another tunnel, one with walls that are dripping chemicals, with a path that is strewn with anxiety, sleeplessness, side effects, and cold. A myriad of unlimited opportunities have collapsed to a single path forward for the next several months (if not a whole year), and I am dragging many dear, loved companions with me through the tunnel. I do not know how to thank everyone enough for seeing the tunnel and wanting to walk with me. If sainthood was not proposed for you all in 2007, that cannot be true after 2011.

And there is a small light - way off in the distance - at the end of this tunnel. It seems nearly invisible today, but I know it is there. Thanks to all for helping me to see that light.

PowerPort particulars

2011-02-01T17:14:00.000-08:00

Today featured a trip to the Salem Hospital for the implantation of a semi-permanent IV device. I blogged about this the first time through, but practice has changed some over the last few years. For starters, we are now more aware of the risks associated with bacteria that are resistant to antibiotics. That means that part of the surgical prep involves two showers with "Hibiclens" (chlorhexidine gluconate solution 4.0%) - one the night before surgery and one in the morning. It also means a lot of fresh towels and clean linens. Instructions include: wash your entire body from the neck down, spending an extra 2 minutes on the procedure site; do not use Hibiclens in your eyes, ears, mouth, nose, or genital area (ummm, duh?); and do not use Hibiclens if you are allergic to the product (hmmm...). I was also told to not eat or drink after midnight - so of course I was parched all night long and struggled to sleep.

The intake process was pretty simple, and I was even shadowed by a "lean" transformation analyst - who was trying to get a sense of the patient experience for service improvement at the hospital. She was very interesting to talk to, and it turned out that we had both done some "hard time" on Kodiak Island. The world is a very small place. :)

This time I did not have a general anesthetic - opting for "managed anesthetic care" where I did not have a breathing tube. I could not tell the difference at all, though the anesthesiologist told me that I was only "out" for a couple of minutes while the port line was actually inserted into the vein near my left clavicle. I woke up in recovery, got dressed, took my wheelchair ride to the van, and went home. C'est finis.

My shoulder and upper chest are quite sore (Vicodin has been my friend this afternoon and evening), and I slept most of the day. Our kitten has been my constant companion, and is becoming quite the lap cat. For my book club boys - I carefully inspected the pills to ensure they matched the label and the Patient Information Leaflet ("this medicine is a white, oblong-shaped, scored tablet imprinted with M357 on one side").

Looks good (not to be confused with "good looks")

2011-01-31T18:09:00.000-08:00

So, that is the succinct summary of my bone scan report, as communicated to me by my surgeon when he called this morning to schedule my new PowerPort. He thought tomorrow (2/1/11) at 9am would work, and wondered if that would fit my schedule. :-) Nothing quite like moving quickly! So, I report to the OR tomorrow at 7:30am. The port will be installed in my left upper chest, and we will use that device to ease delivery of chemotherapy drugs and CT scan contrast agents to my heart for whole-body redistribution. These things are SO MUCH easier than the arm-poke method.

What happens after that? Well, I take a nap and have a sore chest. I schedule and attend a consultative meeting with the liver surgeon at OHSU, and then the first rounds of chemo begin. He will be closely monitoring the effect of the chemo on the tumors... we want them to shrink, but not too much. Then we resection those bad guys. Then we bathe my insides in more chemicals. I will talk in some detail about the chemicals once I know which ones we are using.

Last tidbit... We are going to Orlando next week, prior to the beginning of chemo. I want to see Harry Potter World with Julia and Karen before the chemo begins, and we are going to Cape Canaveral too. I expect to ride every roller coaster, and drink some butter beer, and be silly. I think my girls deserve some fun before we dive back into chemotherapy hell again. We will be figuring out routines, and will work our way through the next several months. As of today, my outlook looks good.

Peace.

Books

2011-01-30T07:05:00.000-08:00

I have been surrounded by books my whole life. From the moment I have distinct memories of places, we have always had books around our homes And since my Dad helped to manage university BOOKstores, they were always a backdrop for any conversation. This is all a good thing. I love books. They are such constant friends, ready to transport you into other minds and other perspectives.

I am a great fan of science fiction and fantasy, mostly because they begin in a reality and then move thoughtfully through that reality. All authors are skilled writers (duh!) but their gifts vary widely. Some are especially great at devising world systems, and then telling epic stories about those places. Others rely more on the human experiences of social development, but tell very interesting "alternates" to them, hinged perhaps on a subtle change to an outcome.

Of course, with an introduction like that, I could go in a dozen directions. But my intent was to talk about my little library. I have several hundred sci-fi/fantasy books. My wife has often referred to it as a part of my dowry. When we married, I sold off at least half of it, but have been building it back again. There are about 250 titles in the "already read" section, and another hundred or so in a "to be read" section. I keep that "to be read" section for the sole reason that I always want to have something that I know I will like at hand - it is a kind of reading security blanket for me. And I love me a good discussion about fantastic futures!

I expect that there will be plenty of time for reading in the next bit. I am always looking for good books to read, and participate in two book clubs already. Anyone with a good sci-fi/fantasy title to suggest? I am all ears. They help me focus on the future, and live outside the present...

Bone scan 101

2011-01-28T21:04:00.000-08:00

New adventure in nuclear medicine today, and it was not too bad from a consumer's perspective. I walked over to the diagnostic radiology lab, conveniently located near our local hospital, to experience another tool in the toolkit of the oncology professional. As mentioned yesterday, my oncologist referred me here so that we can be somewhat sure that our treatment plan is oriented toward the right objective (which is hopefully those two tumor in my liver). The bone scan is meant to rule out additional mets that would not normally show up on a CT scan.

So, as I understand it, the idea is to inject the patient (aka, "Ed") with a radioactive element (Technetium-99m) that has a short half-life (6 hours) and emits a steady flow of gamma radiation that a gamma detector can detect. The technetium is carried by my bloodstream throughout my body, but it is especially attracted to the calcium in my bones. So everywhere there is blood contact with bone, a little of the technetium binds to the calcium there and emits gamma radiation until it has no energy left. More blood flowing to areas generates more technetium deposited, which then leads to more gamma radiation emitted. There is a ton of additional information on Wikipedia, should you really want to get into the science of that process. I was injected with the technetium at 10am and told to come back at 1pm for the scan. No special diets, no fluid restrictions... piece of cake.

Went back at 1pm and was asked to lie down on a gurney. The technician then gave me a cushion to support my knees (slightly bent) and two straps (one to hold my feet together and another to support my arms. He then wheeled me under the gamma detector and I took a nap (honest!) while the machine moved slowly over me. All of my bones slowly light up on the detector, and areas that have the highest concentration of technetium light up the most. The detector is very sensitive, so we will have a good picture of my skeletal health when all is said-and-done. The radiologist's report will be available on Monday.

Not too bad, really.

dagnabit, muskie!

2011-01-27T18:16:00.000-08:00

Alas, here we are again... four years out from the first roller coaster ride and I am back in line for another. It turns out that the elevated CEA levels from last week's blood test reflected two liver metastases from the colon tumor that we exorcised in early 2007. Too bad those rotten little cancer cells were resistant to the FOLFOX cocktail, eh?

So, tons of oncological fun on the near horizon. Tomorrow we have a full body bone scan to check for bone mets. For the uninitiated, "mets" is the lingo for metastases, or cancer that has spread from one organ to another place. It is possible that I have developed bone mets because, in the blood test that demonstrated an elevated CEA level, I got the bonus news that there was an elevated (barely within the upper band of normal) level of calcium in my blood. Calcium in one's blood can result from many things (including vitamins, though this is not the case for me), but we are checking to see if bone mets are the culprit for the elevated calcium. We are hoping beyond hope that this is not the case, since otherwise the metastatic colon cancer is going wild in my system and the liver tumors are the least of my problems.

If the bone scan is negative, then the next order of business is reducing the size of the liver mets. FOLFIRI is our new cocktail friend, possibly supplemented by cetuximab, a biological agent. FOLFIRI is fluorouracil (5-FU), Leucovorin (aka folic acid), and Irinotecan, and it is delivered intravenously. I will need to get another port-a-cath installed, so that they can deliver the FOLFIRI directly to my bloodstream near my heart. This cocktail will be administered every other week until the liver tumors shrink to a manageable size (as detected by CT scans). TOO MUCH FUN!

Surgical resection would happen next, followed by some more chemo to be sure there are no additional tumor-wannabes waiting around, probably with 5-FU, Leucovorin and Avastin. Maybe 2011 will end with an all-clear. Let's hope so.

In the meantime, everyone should relax, enjoy their lives, and hug their loved ones. Really, what else is there to do?

Neuropathy, continued

2009-10-15T22:16:00.000-07:00

OK. We are what, nearly two years out from the last chemotherapeutic encounter with FOLFOX. And the idea was that after a certain period of time the tingling feet and the extreme sensitivity to cold in my fingers and throat would go away. And while I am certainly less tingly and sensitive, I am still aware of the peripheral neuropathy every day. Just yesterday, on my way to work, I had a strange itching sensation right above where my PowerPort used to be... and then today the itch was back again. I even thought that is was on the wrong side, but sure enough (I checked) it was the scar site.

So, what are we talking about here? I don't know. Except that the original purpose of this blog was to tell my story, and the story continues. My hands and feet are still susceptible to cold, though the tingling in my feet is confined to a very small area near the balls of both feet. I do not feel pain when picking up cold objects immediately, but I cannot comfortably hold cold objects for long periods of time in my bare hands. Swallowing cold drinks is not a problem at all. I have not "forgotten" how to swallow food/drink since the chemo ended.

That's the news for today.

Time to reinvigorate the blog...

2009-10-07T11:08:00.000-07:00

2.5 years ago, I entered CancerWorld by way of a hyper-active glandular cell in my lower colon that forgot to stop growing. It has been excised, my immune system has been whacked and regenerated, and I have ridden thousands of miles on a bicycle. Time has passed, and I have completed two LiveStrong Challenge rides (40- and 100-miles in 2008 and 2009, respectively). I am very excited to Ride for the Roses with Lance Armstrong in just over two weeks - another 100 miles in the hills outside Austin, TX.

I stopped blogging for a while... but you already know that. I had tired of reflecting on the effect of a cancer diagnosis on my physical, mental, and spiritual health, and of the effort it took for me to write about those reflections. But I have found that being tired does not make problems go away. Be comforted that I am still "no evidence of disease" (NED), and that my exercise regimen seems to be a very good idea regarding recurrence. But cancer is patient and insidious, and I do not go a single day without thinking of possible futures involving more surgery, more chemicals, and the possibility of radiation. I am ready to take up the virtual pen again.

Two close friends recently detected recurrence of their cancers - one melanoma and one lymphoma... both are very nasty and agressive. And I am ready to maintain a blog of my thoughts on our journeys forward. I trust this meets with your approval. :)

Mamma Mia!

2009-02-14T21:45:00.000-08:00

Just watched this on DVD with the daughterini - and I must say I hope I can be at her wedding. All the stresses and such that they go through in this silly musical ABBA-fest reminded me that nothing is assured in life, and that I would sure like to be available for the "giving away" part of the wedding ceremony.

Just sayin...

Where the heck have you been?

2008-09-27T09:32:00.000-07:00

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...

Sad news - Leroy Sievers has died at age 53

2008-08-16T22:47:00.000-07:00

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 (http://www.npr.org/templates/story/story.php?storyId=92028479) and a wonderful commentary about his impact on the blogging world at his blog (http://www.npr.org/blogs/mycancer/).

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

Peace and love everyone - and live strong.

Story of a Life

2008-08-03T18:53:00.000-07:00

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...

New acronym - NEMD

2008-07-05T08:26:00.000-07:00

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.

LiveStrong Challenge 2008

2008-07-01T22:08:00.000-07:00

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.

Normal?

2008-06-10T17:45:00.000-07:00

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.

Challenges in life

2008-05-24T07:31:00.000-07:00

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.

LiveStrong!

2008 LiveStrong Day

2008-05-18T21:27:00.000-07:00

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.

Things look (and feel) different now

2008-04-28T20:59:00.000-07:00

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.

Didja ever wonder?

2008-04-15T21:48:00.000-07:00

... 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.

The other shoe

2008-04-05T08:39:00.000-07:00

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 http://portland08.livestrong.org/.

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.

Peace,

Ed.

Colonoscopy 102

2008-03-22T14:59:00.000-07:00

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!)

2008-03-22T08:22:00.000-07:00

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].

Preparation
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 of herbal supplements; try to avoid food with seeds (flax seed, popcorn, nuts, berries, etc.); take you usual medications UNLESS stated by our 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 light today (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. Our doctors recommend 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 is to: 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.]

FREQUENTLY ASKED QUESTIONS:
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.

DURING YOUR EATING LIGHT DIET (two days before the procedure) DO NOT EAT THE NON-FAT POTATO CHIPS CONTAINING OLESTRA. IT LEAVES A THICK FILM IN YOUR COLON, WHICH MAKES YOUR COLONOSCOPY VERY DIFFICULT.

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.

HELPFUL HINTS:
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.]

DISCHARGE INSTRUCTIONS:
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!

Walking a little more lightly

2008-03-18T20:59:00.000-07:00

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.

From the mouths of babes...

2008-03-10T13:44:00.000-07:00

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.

Looking into the flames

2008-03-01T13:24:00.000-08:00

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.

Fingernails

2008-02-17T07:30:00.000-08:00

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...

Just thinkin'...

2008-01-26T13:57:00.000-08:00

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'.

PowerPort surgery redux

2008-01-18T21:17:00.000-08:00

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.

What's next?

2008-01-17T20:41:00.000-08:00

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...

CT scan results - verbatim

2007-12-29T07:13:00.000-08:00

For those of you that have not had the opportunity to undergo a CT scan, it is not the most unpleasant diagnostic examination that you can experience. CT is the abbreviation for "Computed axial Tomography," which is sometimes referred to as "CAT," and it is basically an x-ray machine that spins around your body continuously recording digital data about your insides. It takes about five minutes, once you have ingested two quarts' worth of barium sulfate milkshakes over an hour (I chose the vanilla over the berry flavor) and are injected with an additional IV contrast agent (iodine-based, clear solution) during the scan itself. My PowerPort was accessed for this IV, making the whole process pretty straightforward. The oral contrast (barium sulfate) makes it easier to identify the stomach and intestines, and the IV contrast (iodine) makes it easier to "see" my blood vessels and heart. Both contrast agents are eliminated by my liver and kidneys. By the way, the IV contrast agent makes you feel warm inside (one CT technician warned me that it might make me feel like I'd wet my pants - but my experience was more of a warm, metallic tongue first and then a very slightly sweaty sensation spreading down my body and then up into my head). Then the table that I was laying on slides into a circular tunnel (not claustrophobic at all), the scanner starts to slowly spin around me, and a feminine machine voice says, "Breathe in and hold your breath." The table slowly slides out of the machine, and the voice says, "Breathe." It's good to be reminded to breathe every so often. And now we're all done.

Except for the waiting.

Since I am meeting with my oncologist on Wednesday next week and need to take the imagery/results with me, I asked the CT technician when the scan results would be available. He said that I could pick up the digital imagery immediately (since it is digital and all!), but that the radiologist would not look at the images until later that day. So I picked up the imagery and final report the next afternoon, and here is what it says [comments in square brackets are mine]:

HISTORY: Followup colon cancer in a 46-year-old male. He was initially diagnosed in March 2007. He underwent surgical resection in June 2007 [actually, the surgery was in April 2007, and chemo began in June]. Since that time, he has been treated with chemotherapy.

PROCEDURE: Following administration of oral and IV contrast, axial 5mm images were obtained from the lung apices [plural of apex - the top of the lungs] through the symphysis pubis [just below the bladder, basically].

FINDINGS: The lungs remain clear. No developing mass or nodule seen in either lung. No local infiltrate is present bilaterally [I believe that this is a redundant sentence, given the one immediately preceding it, but it might mean that the radiologist did not see any symmetrical "features" that should not be there]. No pleural effusion [excess fluid in the space around the lungs] is present bilaterally and no pericardial effusion [fluid around the heart] is seen. No areas of pleural thickening [increase in the width of the pleura - the lining of the sac that surrounds the lungs] are identified. No developing adenopathy [large/swollen lymph nodes] is seen within the chest. Heart size is normal [whew!].

The liver is normal in size. Numerous small low density nodules are again seen throughout the liver, which measure up to a maximum of about 11mm. All of these nodules were seen on the prior study from 5/22/2007 and appear stable in size and number. No enlarging or new mass is seen within the liver. The gallbladder, bile ducts, and pancreas appear normal. The spleen is normal in size. A tiny low density nodule [this usually means "fluid-filled" and is not cancerous] is seen on image 51, measuring about 6mm. This was present on the study from 5/22/2007 and has diminished in size. Adrenal glands and kidneys appear normal.

Postsurgical changes are present within the pelvis. A suture line is noted at the rectosigmoid junction [where the rectum connects with the large intestine] compatible with partial colonic resection [the surgery I had]. The remaining colon appears unremarkable [my new favorite diagnostic word!]. No areas of bowel wall thickening are seen. Small bowel appears unremarkable. No dilated bowel loops are present. No developing adenopathy is seen within the abdomen or pelvis. No ascites [accumulation of fluid in the peritoneal cavity - basically the area below your lungs and above your crotch] is present. Bladder appears unremarkable.

IMPRESSION:
1. No evidence for developing metastatic disease or recurrent neoplastic disease within the chest, abdomen, and pelvis.
2. Clear lungs.
3. Stable appearance and number of multiple small low density nodules in the liver. A prior ultrasound was performed on 3/29/2007, showing these to represent cysts. No new or enlarging mass is seen within the liver.
4. No developing adenopathy is seen within the chest, abdomen, and pelvis.
5. Postsurgical changes related to partial distal [toward the end] colon resection. Area of anastomosis [the site of the surgical reconnection of the two parts of my colon] appears unremarkable, without developing wall thickening. No adenopathy is seen within this region.
6. No ascites is present.
7. Tiny nonspecific low density nodule is seen at the anterior margin of the spleen, diminished in size when compared with the study on 5/22/2007.

So, with the caveat that I have not spoken to my oncologist yet, I think this CT scan result bespeaks quite good news. Thanks for your interest and attention, and you will now be returned to your regularly scheduled programming....

Respite

2007-12-26T20:37:00.000-08:00

Hello. Remember me? I've been "off-blog" for nearly a month now, and have been feeling more and more guilty about that. So, where have I been, you ask? Well, I have been wallowing in the distraction of not having any more chemo-therapy to endure. I have been swimming in the warm waters of a slowly healing body, experiencing the flavors of beer, wine, scotch, and ethnic foods as often as possible. In short, I have been trying to reclaim some semblance of normalcy at the end of Ed's cancer-year.

My fingertips tingle a bit all the time, but especially when I exert any pressure with them (like typing) - and I have a lot of trouble with the collar buttons on my work shirts each morning. I mistrust my fine finger coordination, and have found that I drop things more often than I think I should. My feet tingle constantly too - and this is especially difficult at night (when I think that my feet are extremely cold but they are just, ummmm, tingling).

I would say, though, that getting *away* from cancer-world is virtually impossible. My family and I went on a very relaxing cruise in the Eastern Caribbean. We enjoyed warm weather, calm seas, wonderful meals and no responsibilities for seven straight days. We enjoyed each other's company as well as the companionship of several hundred strangers, and were treated royally by the staff and crew of the Celebrity Millennium. We frolicked on tropical beaches, we enjoyed the massages, the tropical fishes, and the shopping in far-off ports. In short, we had a lot of fun. But I couldn't seem to shake the nagging feeling that my world is still shifted from the *way it was*. My port is still bulging out of my upper-right chest, and I know I have a CT scan tomorrow and an appointment with my oncologist next Wednesday.

Respite - a break from the way things are - is essential. "Vacation" is an Americanism that I have never found to encourage relaxation. I tend to try to force too much *stuff* into too little time, and end up stressing out about the content of that time. This cruise ended up being a great respite for me, but only after a couple days' worth of stress about spending money and over-planning daily activities. I am so glad that we went, and glad for the companionship of my wife, my daughter, and my brother-in-law... and for the anonymity of cruising with strangers. Sometimes getting away from "it all" is impossible, but we managed to get away from most of it. And for this I am most grateful!

Toxic clouds with silver linings

2007-12-02T21:34:00.000-08:00

OK. I was scheduled to get my 11th (and last) treatment last Thursday. At the previous monthly appointment with my doctor, we had talked about the endgame for my chemo-therapy, and had agreed that the "final" (12th) treatment could be avoided. (Given that my family has had a special vacation planned for December to celebrate the end of chemo, I had decided that I did not want to spend any vacation time feeling chemo-crummy.) So, #11 on November 29 would be the last one... if my blood work was OK. On the 28th I had a blood test to see if the trip to Portland was even needed (this after a reduced dosage of both oxaliplatin and fluorouracil during treatment #10 AND five injections of neupogen to encourage the growth of white cells and neutrophils). The results were mixed (WBC was too low - 2.7 when I need at least 3.0 - while the ANC was a protocol-minimum 1.5), so we decided that it was worth the trip on the 29th.

No go. The blood work up at the clinic in Portland was significantly different from the previous day's test results. WBC was a 2.1 and ANC was 1.3, both far too low to withstand the impact of chemo-therapy. No treatment #11 (unless I want to, ummm, come back a week later for another roll of the bloodwork dice). No thank you, really. I did not get treatment #11, and #12 is off the calendar completely. I need to enjoy this vacation, and I want my family to be able to enjoy it even more. Being tired, and cranky-stinky - well, that doesn't sound like a fun guy to be (or be with) on a vacation. So, the chemo-therapy part of this colon cancer thing is over! But, what about the implications for my "cure" probability?

I am not qualified in any medical sense to speak authoritatively on that question. But, ten solid treatments are under my proverbial belt, though there have been three increasingly difficult delays. Peripheral neuropathy on the rise, even with decreasing dosages. I trust that my body has been hammered pretty hard by this treatment regimen, and that it is telling me that it has had enough. And everyone is different - on so many levels - that the prescribed length and dosage of treatment must be a variable that is flexible. The toxicity of the chemicals used to treat cancer is intentional, in order to wipe out those hypothetically "fast-growing" cancer cells. My body has been surprisingly strong in dealing with the bi-weekly introduction of liquid poison. My fingertips and feet tingle all the time, and I am very sensitive to cold and heat. My insides are producing gases that should not EVER be released in an enclosed space. And the high fatigue right after treatment had extended from 4 days to about 6 days... and now all of that is only going to improve!

Every day is a day closer to a new normalcy, without the added mental weight of anticipating negative blood counts or the infusion of toxic chemistry. I can work on strength recovery, and look forward to daily walks to work. And the vacation is just around the corner.

Now that's a silver lining.

(PS - the next step is a CT scan on December 27th to check the status of my insides (basically looking for anything unusual) followed by a post-chemo appointment with my oncologist in early January and a colonoscopy later in the spring.)

Ignorance and bliss...

2007-11-25T20:42:00.000-08:00

I have not felt the need to "publicly" respond to any of the comments that I receive related to my posts has been necessary before. My general sense is that most comments are of the "keep your chin up" or "thanks for sharing" variety. And while I certainly appreciate the support that those type of comments provide, they have not caused me to want to post a response. However, three versions of one question were posted the other day related to one of my blog entries, and I feel somewhat compelled to pontificate...

"Do you feel your experience with cancer has been more difficult as an intellectually sound individual? Has the pro-active spirit made the journey mentally taxing as well as physically? I guess what I'm trying to say is do you sometimes feel others are fortunate with an ignorance is bliss attitude?"

First, I appreciate being called an "intellectually sound individual." Some days I am not so sure that's the case. :) But the question is still out there, and my experience with cancer is what this blog is all about. Yes, the journey HAS been damned difficult... and not only for me. Chemo-therapy and the odd mixture of side effect management drugs is very distracting on so many levels - but I have already blogged (ad nauseum - pun intended) about those issues. I regularly see the world through a different lens than I ever could have imagined using prior to becoming a member of the cancer club. But the idea of "more difficult" than some other person's journey troubles me. I am not sure that any one else's cancer journey is qualitatively comparable to mine, and I have a hard time imagining my new life journey (one, perhaps, dulled by drugs?) that is so different from the one that I am living. Every cancer treatment regimen is ultimately an experiment of one... an experiment that is statistically informed by the individual treatment "experiments" that preceded it. I am lucky to have been diagnosed now (as opposed to a decade ago), and to be otherwise healthy enough to handle the chemo-therapy. I'm not sure if that is a good answer to the gist of the question, but there it is.

So, let's consider the second approach to the question - about mental taxation and a pro-active spirit. (Again, my thanks to the comment-poster for the complimentary manner in which this question is raised.) I, "Mr. He-Who-Must-Analyze-Everything", cannot imagine being less active than I have been. But yes, that does add to the mental anguish I feel about the way that my experience of the world has changed. And by extension I am sure that the energy I devote to thinking about, researching, analyzing, questioning, and re-analyzing the details of my diagnosis and treatments is not available to my physical self. This begs another question/observation though: would I have it any other way (or perhaps more accurately, can I imagine myself not doing these things)? Not really. I am what I am (apologies to Popeye), and that means constantly re-examining what I know and what that means about my world. So, yes it is more taxing to be self-aware and proactive about my life as a cancer survivor than my life before the diagnosis - but only because I have a new reality to understand and embrace.

I am unsure how I should approach the last approach. "Ignorance is bliss" is one of those aphorisms that I only partially understand. I can accept that there are only so many issues or processes or whatever that one human mind can hold and consciously act upon. Can I really affect the abject poverty of sub-Saharan Africa - caused by centuries of tribal and colonial machinations layered atop environmental changes that transcend locale? What about the plight of homeless persons, with the multiple facets of modern existence that confound their ability to successfully interact with their own cultures? I am (selectively?) ignorant about the details of these situations as I work to handle the complications of a cancer in my life - and might consider that ignorance to be a kind of bliss. But applying that attitude to how one deals with a cancer diagnosis (or any other significant, life-threatening event) doesn't work so well for me. I cannot detach the analytical, proactive aspects of my "self" so as to be able to imagine how it might feel (better or worse) without those characteristics. And it is hard to imagine "not knowing" about a cancer (or the details of the diagnosis, prognosis, treatment, and recovery) as being somehow better than knowing... but that can only apply to me.

Cancer sucks. Period. There is really no blissful ignorance to wallow in once the "c" word enters your life. My friends and family have tolerated my somewhat compulsive, detail-oriented approach to colon cancer, and have encouraged me to find whatever way forward I need. I have been a cranky dude at times, and that has made it difficult for my nearest and dearest support group. On many occasions I have felt the need to apologize for unfortunate utterances (due to fatigue, or chemo-brain, or just plain tiredness). But soon, the transfusions will be finished and I will be moving back toward a "normal" life - whatever the hell that means.

So, the summary answer? Cancer is hard on everyone it touches, however directly or indirectly. Being proactive or hyper-analytical does not change that statement overmuch. We all struggle to decide how much we need to know about some aspect of our lives, and we make decisions based on the amount of information we feel is "enough." I am sure that there is a spectrum of "responses" to this line of questioning, and it's certainly possible that I am a statistical outlier. (I know some people that would argue that that "possibility" is close to 100% likely!) I feel lucky to be who and what I am, and to know that I can rely on a strong, supportive community for support. And that's what matters.

Plumbing

2007-11-22T07:13:00.000-08:00

Sitting here on Thanksgiving morning, in the relative quiet before the annual storm of friendship descends upon our kitchen and dining room, I wonder how often we really think about the infrastructure of our lives. My day-to-day routine just seems to happen, you know? Some alarm goes off (mine is internal and seems to be pegged on 6am local time - wherever that happens to be), and I begin the day. Most days, this involves some level of external light (sun rising over wisps of fog in the park, a hint of grey light in the eastern sky, or even a blast of golden energy into our second story bedroom) and sound (the steady thrumming of raindrops that are moving through the gutter system outside the window, wind flap-flap-flapping the sign that announces yet another years' holiday sale at the art museum across the street, the Amtrak commuter line to Portland announcing that yes, again, it is heading up the tracks, or even the background street noise from earlier-risers on Liberty and Mission Streets making their way to someplace else). Today is quiet and dark.

I go downstairs to perform ablutions - shaving with an electric razor (to avoid those nasty and potentially infected nicks and cuts), counting the remaining hairs on the top of my head, showering off all of the sleepiness and such. I turn the faucet handle at the sink to rinse off my razor, and clear cold water appears to do my bidding. Seconds later, bearing its micro-burden of beard remnants, that water whisks itself down a little hole and disappears back into the greater puddle we call our sanitary sewer system. Quite the little feat, there, and all assumed and trusted every day of our lives. As they say, "out of sight - out of mind." The water lines coming in to the house, and the sanitary sewer lines that drain our house, are hidden and silent behind lath-and-plaster, PVC, cast iron, and dirt. Yet our lives are so dependent on this hidden engineering.

The upstairs bathroom sink - a high-traffic area for us in the morning and evening - is draining poorly these days. And that means consideration of its health... Are we just looking at a hair/soap scum problem that can be removed by chemical or physical means? Are we talking about some exploratory pipe-work (always a little nerve-wracking, since the exploration can cause damage to water seals and pipe threads, and you may discover a systemic rather than localized problem!)? Do I have the skill, the tools, the replacement supplies... all that I will need to explore and then re-connect my vital sink infrastructure before it is needed again for tooth-brushing and face-washing and the like...?? Oh, the trouble this little drain may cause!

And all about a simple little sink drain! "Can't we call a guy" and make this whole thing go away? Pay someone to bear the burden of uncertainty and to assume the mantle of authority when it comes to diagnosis, prognosis, system design, and reconstruction? Geez. Let's try to plunge it first, then pour some chemicals in... we can always "call a guy" later, right? He'll come in and fix it up like new, no matter what we do first... uh, right?

Funny little story, eh? Variants on this story happen millions of times every day, and with only the smallest of repercussions across the infrastructure of our lives. But then again, take out a major highway bridge across the Mississippi River, or flood out the pumps that keep Manhattan's water table below the level of the deepest subway, or even ignore a backed up sink drain for a couple days, and all hell breaks loose. Now you've got compounding problems everywhere. In my simple example, water begins to spill onto the flooring (which is the ceiling of a lower floor), or the physical/chemical initial treatment finally weakens the main drain pipe enough that a small (unseen) leak develops inside the wall and it begins a different kind of structural problem. Yikes.

We take so much for granted in our modern existence. Clean air - delivered to our lungs 24/7 due to the symbiotic functioning of sunlight and chlorophyll; clean water - evapotranspiration and filtering provided at no additional cost by sunlight and soils; safe food and shelter; and healthy bodies. We have to watch all of these things carefully, maintain their health so to speak, and I realize that there are limits to the ability of one individual/family to manage all of the huge systems that support modern living in America. But awareness and reflection - those are things we can and should control. Be aware, for your drain may be in need of some attention sometime soon. Don't ignore the warning signs, or casually procrastinate on action. Fixing the problem later may cost a lot more than you are willing (or able) to pay.

Peace, and have a joyous day of thanks. I know I will!

What's up with these hiccups?

2007-11-15T21:24:00.000-08:00

So, I guess I am truly back in the land of chemo-therapy. The hiccups have plagued me throughout the day, and none so much as during a public lecture tonight. Sitting in the middle front, I am sure that the speaker could hear every one of them over the course of the hour. Should you ever read my blog, Prof. Prothero, I am sorry if they were any kind of distraction for you... they sure bugged the crap out of me! But these little irritating side effects must mean that the chemo is back on the job.

So, we also had a lengthy discussion with Dr. Blanke, where we talked about the value of each additional treatment to my overall survival, we talked about the December cruise, we talked about the study protocol and my cell counts. The survival numbers apparently are increased by a couple of percentage points with each of the later treatments (the takeaway here is that the earlier treatments are much more important than the later ones), the December cruise (and my unwillingness to travel as a tired, wiped out chemo patient) is definitely on for mid-December and I will not be receiving treatment after November 28 (hopefully, #11), and the study protocols for treatment are absolutely no different than the standard FOLFOX treatment that I would have received at Salem Hospital.

For those of you data hounds (you know who you are!), all of my blood counts were in great shape - nearly as high as the blood counts that I recorded before my first treatment. The ANC was 2.6 (double last week's 1.3), and all of the others were up there too. Go figure. I am getting another series of neupogen shots (beginning on Saturday afternoon) to help support my ability to get treatment #11 on the 28th. By the way, if I can NOT get treated on the 28th due to low blood counts, then #10 will have been the last one. I am ready to be done, whichever way that particular ball bounces.

Too tired to continue this blog... but thanks for your continued interest and support.

Treatment #10

2007-11-14T16:17:00.000-08:00

Finally, we can cross off another one of those elusive chemo-therapy treatments! This morning we drove up to the Center for Health and Well-Being (catchy name, don't you think?) and, with the help of frantically-aligned planets, karma sent toward us from around the globe, and a heavy dose of restorative rest over the past five weeks, I passed my blood test and was infused. The dosage of oxaliplatin was again reduced (now down almost 50% from the amount I received in each of the first 8 treatments), as was the 5-FU (down 25%), and I am again receiving the neupogen (1 injection daily for 5 days starting on Saturday). We are told that this delay-stuff happens routinely in about 1/3 of the cases that Dr. Blanke has seen.

So, now I will be tired again (or, MORE tired than I have been for the past several weeks). But, at most, I have two treatments left. And I'll fill you all in on the scenarios in a later post... but I needed to get the blog-post monkey off my back. Thanks for all the support, and karma.

Peace.

Restoratives

2007-11-05T21:03:00.000-08:00

I have been told by someone near and dear to my heart that my posts have been somewhat thematically "stuck" for a while now... as in "redundant and whiny." OK. It's hard to be creative and inspired when you are stuck in the middle of an uncomfortable place. Professional writers have a term for this - writer's block. Oh well. Not so much to tell these days that you haven't heard before...

The question is: what to do about it? Try a new topic, then come back to the assignment? Just start writing whatever comes to mind? Do some math homework for a while to get your mind off things? Oops, slipped back into high school English class for a second there. (Didn't work then either.)

The family (and a friend of my daughter) all went to the beach on Sunday. Pacific City and Cape Kiwanda... For many years, the beach has been my "go-to" place when I am working through hard stuff. And this chemo-thing definitely qualifies as one of the hardest things I have ever done. I went to the beach to recover from graduate school and my disappointment with the trials and tribulations of academia. I also went to the beach to recover from the bureaucratic bruising that I received from state government and its ability to crush the energy out of type-A personalities. And now I return (albeit briefly) for a little oceanic restorative treatment during this phase of Ed's cancer world.

I'm not sure what it is, exactly, that the beach does for me. The sounds of waves endlessly marching forward (even in the ebbing of the tide) and seagulls crying, the freshness of the air and its salty tang, the dancing of the sand as the wind blows it into swirls, the froth and splash of water carving sand and rock down to size? To be honest, I wanted to see really BIG waves smashing into headlands - unfortunately, the tide was wrong and we haven't had any good storms to build up the surf. But on this trip I noticed a windblown, gnarled tree growing by itself atop an eroding pile of sand and rock - struggling against the salt air, the absence of sufficient soil, and an overabundance of rain - a survivor. Some of those windblown trees that line the coasts of Oregon and Washington are far older than me, and are barely my height. Truly, an inspiration if ever there was one. And restorative for my soul.

Peace, and warm greetings from the Pacific Northwest.

Silence can be deafening

2007-11-03T20:34:00.000-07:00

It was another rough week. Well, mostly it was a rough Tuesday and Wednesday, followed by a mostly OK Thursday and then Friday was basically as normal as days can be when you are on "chemo-watch." As many of you know and some of the rest of you have guessed, I did not get treatment #10 this week either. Though the ANC was encouraging enough on Tuesday morning (1.3 by machine count and 1457 by manual count) to have OHSU suggest a re-test on Wednesday morning before we headed up to OHSU, my blood work on Wednesday morning was actually worse than Tuesday (1.2 by machine count). I was both unhappy and very frustrated by this series of events. Gearing up for treatment (physically and mentally) is getting tougher each time, and these delays are very hard for this Type-A individual.

I am so ready for this part of this journey to be over. I struggle with the chemistry part of my preparation for and experience of FOLFOX in that I hate the complex biochemical cycle of anti-emetics, stomach acid control, laxatives, stimulants, and sleeping aids that accompanies the conscious infusion of anti-cancer meds. I hate being tired, and having to rest, and not being able to be the active adult that I have always been. I hate that I am somewhat short-tempered, and that I need to wash my hands so frequently and think carefully about when and where I go places (in order to avoid exposure to cold germs - which seem to congregate where crowds of people go). Like grocery stores, and movie theatres, and, well, most anywhere outside. Result: I have been avoiding this blog.

People began to wonder about its silence. Is it good that he isn't blogging, or did something go wrong? Should I call him, or will that be a bother? I received some really kind support notes - from my Dad, from my Mom, from my neighbor Tom, from Megan (an Internet acquaintance who has been there), and from Angie (a fellow chemo patient at OHSU who just completed her regimen this last month). And I know that there are literally tons of people in my extended support network that think of me from time to time and send uplifting and warm thoughts and energy my way. Thanks. As hard as this week was, I am sure that it would have been completely unbearable without you.

So, the aphorism about "silence being deafening" now has a different meaning for me. Maybe its that the lack of hearing from someone (or absence of a blog post) makes the world we sense just a little deadened - like what happens when you put a pillow over your head. And that's how I felt on Wednesday. I needed to de-sense for a bit, and I retreated from some parts of this cancer life. But I am not giving up. The next month or two will be a roller coaster, I expect, but I have always loved the thrill of real roller coasters. Just ask my brother-in-law and my daughter.

But hey, the Huskies finally managed to play a complete game and beat Stanford, and the Ducks made quite a statement against Arizona State. Do I see Oregon playing Ohio State for the national championship??? Now that would make most Oregonians roar with pride - far louder than a pillow could contain, don't you think?

The next setback

2007-10-25T21:15:00.000-07:00

OK. Treatment #10 has not yet happened. My blood work (specifically, my Absolute Neutrophil Count - ANC) was not up to snuff by a long shot. To wit, I need an ANC of 1.5 to be infused with the toxic soup and mine was 0.7 this time. I was frustrated enough to demand that they draw another blood sample and rerun the analysis. The second sample came back 0.6... In no way was I getting my tenth infusion of FOLFOX this week. Very big bummer. And I decided that a third sample would put me into the "scary vulnerable" category related to susceptibility to colds and infection.

But the very worst part of my frustration this time was the absence of any explanation and/or advice about what to do next. Beyond "see you next week," I felt like we were hurried out the door. My doctor was in a meeting and told the nurse coordinator that I should not receive additional neupogen, because it apparently wasn't working. We just rescheduled ourselves to be at the clinic on every Wednesday for the foreseeable future, not knowing if my ANC will even recover to 1.5 after this additional week of rest. And then waited for some information...

...Which I eventually received today via a phone call. Next week I will have my blood work done in town the day before we are scheduled to travel to OHSU for infusion #10, and if the key components (ANC, white blood cells, and platelets) are not above the protocol's minimum values we will not have to spend half a day driving to and from Portland. This is a better arrangement than the previous schedule. And I am to avoid germs as much as I can by staying away from crowded places where my chances of catching a cold (or other infection) are highest. Like, ummmm, churches, bars, and grocery stores. And I am supposed to become more fanatical about clean hands. The clinical study protocol allows up to six weeks between treatments, so I can still be in the study. But that may have me on this toxic soup delivery schedule well into the new year. Yippee-skippy, don't ya know.

I still have some questions, though, that I intend to email to my doctor. Like, at what point do we hear my body saying, "Enough already!" and then decide to stop the poison? And, is there anything that I should be doing (or not doing) that will help my bone marrow/blood recover? And what the heck happened to the Colorado Rockies in Game One of the World Series??!?

Yup, the world keeps spinning, in spite of frustrating days, unexpected news, uncomfortable silences, and unbelievable pitching.

Thanks for reading my blog, and caring.

MISTER crankypants

2007-10-21T19:21:00.000-07:00

Well, here we are. The Sunday of the week of (hopefully) treatment numero diez, barring the news that my blood cannot handle the chemo at this time. But we are ever-positive that the decreased dosage of oxaliplatin in combination with the neupogen injections will work together to support the next round of intentional toxicity. I am both looking forward to and dreading Wednesday morning at 10am...

But that is just my mental state as of the bottom of the sixth inning of the seventh game of the ALCS, with the score 3-2 in favor of Boston over Cleveland. As those closest to me will be quick to say, I am a little difficult to handle these days. And it's more of a "tone of voice" thing than anything else, or so I'm told. I can't say that they are wrong (mostly because I am not intentionally using that yucky tone of voice), but it makes me sad to think that that is what I sound like. What to do?

I think it's fatigue. And I know that the fatigue and tiredness will be getting a bit worse over the last three treatments. And that those last three treatments will - fingers crossed - be done by Thanksgiving. But it bothers me that I cannot seem to get a handle on that whole tone-of-voice thing. And that I do it unconsciously. And that it is dealt most often to the wife and daughter.

So we try to make a little joke out of it, and we all refer to Mr. Crankypants when this attitude and tone pop up. Sometimes, though, it's too late, and the crestfallen look of a child reminds me that life is good (and too short to bring such sadness to anyone, much less my loving daughter). Part of the problem, today, was work-related stress... and that is not fair to anyone. Part of the problem, too, was trying to do too much physical work in my weakened condition. But I am not a fan of excuses, even when I know I currently have one of the best for just about every foible and shortcoming. So, Internet denizens, I am declaring a moratorium on cranky responses to questions and observations. And I will do my best to relax and listen.

Happy birthday, Al. It was fun at dinner tonight, even through the drama of Japanese food and silly hats. And the girl-chemistry interference run by the other parents present, I say "gracias, mis amigos".

Bye-bye for now. And have a great week.

Ramblin' Man

2007-10-13T11:07:00.000-07:00

It's autumn in the Willamette Valley. The trees are changing their clothes, preparing for the chilly winds of winter. The dogs that walk their companions through the park are wearing their coats a little more tightly these days (no kidding, I just saw two greyhounds walk by with those little racing blankies tied to their necks). And my cold sensitivity has put me in constant touch with the neurons in the soles of my feet, fingertips, and nose in ways that cannot be adequately described in words. Let's just say that I am in a state of constant awareness when it comes to those areas of my body, and leave it at that, OK? :)

But, today only, there is actual good news from the peripheral neuropathy department... little or no additional skin tingling on my upper right abdomen! This decrease is likely due to the lower dosage of oxaliplatin that was infused on last Tuesday - in response to my concern about the "spread" of skin tingling being indicative of the beginning of a chronic condition (and we do *not* want anything like that).

And what else... thanks so much for the quick, supportive comments on the blog! It seems like forever that this odd-venture has been going on, and I appreciate the continuous sense of hugs and care that buoys me up each time I check-in at blog central. I just spoke to my Mom, and she reminded me that this blog sometimes gets printed out and mailed around for those folks that are still more attached to the non-electronic forms of communication. I can only say, in partial defense, that if I even TRIED to hand-write notes to all of you, I would feel a miserable failure due to the volume of email and cards I get. And for all of that potential misery, you have my eternal thanks.

These days right after chemo are the slowly plodding left-right, left-right days in this treatment regimen... then things start to pick up until just before the next treatment... as does the dread that accompanies the anticipated resumption of the plodding. What can I say? I want to jog around the park, or at least walk it once or twice. I want to start getting my legs in shape for skiing. I want to eat bloody red meat (and taste it too), and wash it down with a decent glass of hearty red wine. Then there's the dessert... I want to wrestle (gently, of course) with my daughter, and not worry about clonking that silly (but essential) port-a-cath. I want to be able to plan a weekend without worrying about where it lands in relation to the bi-weekly chemo-hell...

OK. Now we know that Ed can complain as well as wax philosophical. I DO see a light at the end of this tunnel, and I know it's not a train wreck waiting to happen. So where does that leave this blog post? Rambling around, no beginning, no end? Maybe that's it... no beginning, no end.

Peace to you and yours, and for our tiny blue ball as well.

75% and running downhill

2007-10-09T21:10:00.000-07:00

My blood work was good today - appropriately up or down on every important component. It's amazing what an extra six days will do for anyone on the receiving end of the toxic drip line. Additionally, the dose of oxaliplatin was reduced to 125 mg (from 176 mg) in an attempt to minimize the peripheral neuropathies. Yeah for that too! Of course, the treatment regimen consumed most of the day (left home at 8am, returned home at 5:15pm). And finally, I will begin to receive neupogen shots (once daily for five days beginning 24 hours after the 5FU pump is disconnected and my PowerPort is deaccessed. Neupogen kick-starts my bone marrow into overproducing neutrophils and white blood cells - and this will hopefully prevent any more treatment delays. If true, I should receive #12 of 12 treatments on November 21... which will make Thanksgiving VERY meaningful this year.

So where does that leave us? 75 percent done. Next one is 83-1/3 percent done, then 91-2/3 percent done, then 100%. No philosophical energy tonight, but thanks for all the spiritual and psychological energy you all sent toward me today. It most certainly helped!

One week later

2007-10-07T07:59:00.000-07:00

It's been a week since the LiveStrong Challenge. And the weather that blasted into the valley that weekend has ushered in the full Fall experience in the Willamette Valley, with brisk winds, leaves quickly shifting colors (from green to brilliant red and orange) before flying off the tree and turning brown, and the sound of the furnace kicking on at 6:55 AM each day. Fall has definitely fallen.

Last year at this time, I was planning for and looking forward to another yearly reunion at the Tree Farm. College buddies of mine have been congregating each year about this time to eat salty peanuts (in the shell), drink small amounts of beer and wine (in comparison with the more copious quantities that we think we remember drinking as mere twenty-somethings), and wander through the trees - contemplating our small individual roles in the universe while celebrating the joys and pains suffered by our little group over the year. Spouses have been invited each time we plan one of these "events", and each time we are declined. I guess they have a hard time imagining the fun in listening to us re-tell Monty Python movies all weekend, while (a) playing with the bulldozer, (b) arguing about who remembered what correctly about that time we did that thing - you know, over by Drumhoeller Fountain on campus, or (c) trudging to the two-holer outhouse in the darkness and rain. I really really look forward to and enjoy these outings/reunions.

This year, becoming known locally as "Ed's Cancer Year", it does not appear likely that the group will be able to make the Tree Farm trip. We had a great time attending Spamalot (see Sept. 2 blog posting), and our intrepid long-distance attendee cannot make too many journeys north each fall (you know who you are!) Maybe we can try in the "spring", but then we end up fighting with the snow... And we are planning to come together at my house, post-Thanksgiving, to watch the Apple Cup football game. This year, it may be the ONLY source of pride for the Huskies and Cougars. But let me say this - I love this group of people and they are yet another source of strength for me as I struggle through the final third of my chemo.

Which, once again, was delayed last Wednesday. ANC was low again, and I have to admit that my frustration is/was higher this time than the last time I was delayed. For these chemo-treatments, I have to get myself mentally and physically prepared. And the last delay means that (optimistically) the last day of treatment is now the day before Thanksgiving. Whoopee, wouldn't you say? Nothing like eating turkey, yams, potatoes, and pumpkin pie while listening to the 5FU pump whirr every 90 seconds or so. The doctor seems to think that we can modify the oxaliplatin dose so that these bloodwork delays might be removed. I hope so. I am tired...

Thanks for reading, and caring, and supporting us through this particular form of hell. I feel like I am a better person for being on this journey, but sometimes I feel a need to complain. Sorry about that part! :)

Living strong

2007-09-30T14:31:00.000-07:00

The big day - Julia and Karen riding ten miles to raise money for cancer research through the Lance Armstrong Foundation - began at 4:30am. The rain fell and the wind blew all night long, and we had a little pre-ride anxiety and energy that made sleeping perilously evasive and too short. But the day was upon us and our little caravan managed to get on the road to Portland by 5:30am. Driving in darkness, on a rain-slick interstate, toward a very predictably wet and miserable ride... almost made me glad to be a spectator. And the confused arrival at the Nike World Headquarters was particularly comical (and would have been even funnier had I been able to disassociate the driving from the directions we received from volunteers directing us hither and yon in order to park the van).

But we made it. And the Nike campus is a beautiful place. We heard Lance give some inspirational words (like, "it's a great thing for all you folks to be here, especially in this kind of weather") and then the riders were off. Well, kind of off... the 100-mile riding group took nearly twenty minutes to slowly ride past the start line, then there were the 70-mile and 40-mile ride groups, and nearly 45 minutes after the first "start" the 10-mile group started. The rain and wind slowed everything down, and caused the entire post-race party to be moved indoors.

After an hour or so, and a small meltdown mid-course, our intrepid duo and their riding group (Team Wildwind) sloshed across the finish line to the cheers and whoops of their supporting crew (dad, two aunts, two grandmas, and one niece). Unbelievably, none of the group actually suffered hypothermia, and they only dripped and squeaked when they moved. :) After a change of clothes, some warm drinks, and some food, they/we enjoyed some of the post-ride atmosphere and then headed back home - tired and weary, but warmly satisfied with accomplishment. Thanks to Team Wildwind - Alison, Steve, Rebecca, Joe, Kimberlee, Julia and Karen - over $6000 was raised. Can we have a whoop-whoop for these riders/fundraisers, please?

From the sidelines, I feel honored to have witnessed this event, and plan to enjoy it myself next year. I think that a 40-mile or 70-mile ride is well within my ability. Let's make that our goal together, OK? And as for an intermittent health report, I have to say that despite the longer recovery this last time, I feel pretty good today. The extensive walking around the expansive Nike campus was tiring, but I got a very nice massage from the trainers there afterwards and consider that a good trade. I am up for treatment #9 (three-fourths done, if my blood work lets this treatment happen on-schedule!) on Wednesday. Living strong can mean so many different things, and does, to everyone that confronts cancer either directly or indirectly. For me, it is seeing the strength in my wife and daughters' eyes as they shivered through the rain and wind to finish the 2007 Livestrong Challenge; it is feeling the passionate support from my family, friends, and colleagues as I struggle with the physical and emotional demands of chemo-therapy; it is knowing that those struggles are mild in comparison with other cancer patients' journeys, and it is reflecting the unique beauty and wonder of life itself and the world that we each experience each and every day. Cancer - the new self-awareness drug for the 21st Century.

Peace to you and yours, and hugs for everyone.

A rough day...

2007-09-20T05:17:00.000-07:00

What does a "rough day" feel like when you are in chemo-world? I just KNEW you were gonna ask that question. And boy does it feel not great. I have written at some length (or at least several times now) about the quantum physical aspects of chemotherapy. And those effects are slowly magnifying due to the cumulative effect of adding more chemical toxins to my system before my healthy liver and kidneys can eliminate the entire previous dose. Old story - not really worth repeating - except that I am beginning to think that the physical and the emotional aspects of fighting cancer are pretty closely-linked.

Some of you are probably thinking, "well, duh!" OK, I too have said that out loud before, and sometimes even in the context of learning something about myself. ;-) Here is a wonderful opportunity, then, for you all to feel smarter than the cancer patient. Sometimes it is fun to be smug, isn't it?

... Which leads me to describing a different kind of rough day. Sunday morning this week was a very difficult time for me. (Lots of crappy stuff is going on in our extended family and friends support network, including a grandma who broke her hip as a result of a fall, and a great uncle dealing with recurrent cancer that has metastasized, and a dear young friend in hospice care.) Then my wife and I got into an argument about something rather small, right before she was trying to leave the house to drive her Mom to the airport... and it exploded into angst and frustration and not-nice words. To be candid, though, I was pretty crushed by the words. Maybe if my physical self was stronger, and if I wasn't so unsure of my medium-term and longer future, it would have been an easier thing to look past. But in my weaker physical state, and in part because I am already feeling a little fearful about the post-chemo landscape of living, I pretty much fell apart. And only moments later was alone to deal with it - daughter at a friend's house and wife on the road... and unsure of who to talk to (if anyone). For distraction, I went to a friend's house to help with some simple drywall and computer problems that he was having, and helping someone else really helped me.

By the end of the day, tempers had eased and a heart-to-heart talk made everything well. And it's more than likely that this event was closely tied to chemo-brain, which to me is somewhat encouraging. But I am beginning to mistrust my memory and emotions... and I really, REALLY hope that post-chemo will be a MUCH more normal place than chemo is.

Thanks for your continued support, and for reminding me that chemo-world is a not-real place.

LiveStrong Challenge newsflash...

2007-09-12T20:48:00.000-07:00

I am one lucky guy.

My wife and daughter have decided to *do* something in support of cancer patients and treatments. I mean *do* in the sense of something BEYOND what they are doing for me personally - you know, the putting up with Mr. Cranky-Pants, and Mr. Tired-Beyond-Belief-Man, and Mr. Steroid-Rage-Man; the cooking for Mr. I'm-Not-Hungry-Today and Mr. My-Tummy-Hurts; and the pushing me to see the joy and humor in our wacky world. Besides that, they are raising money in the Lance Armstrong Foundation's LiveStrong Challenge. And they have reached their PERSONAL fundraising goals! This is beyond cool...

Their team (Team Wildwind) will be riding 10 miles on Sept. 30 in Portland, OR. And they are training like wild women for the ride (not that they really need the training, but it's very fun to hear about it and encourage them). And I will be there, cheering the team to the finish line. If you want to see what this is all about, go to:

http://www.livestrong.org/

And click on the "Get Involved" tab, then pick the Portland Challenge from the pulldown menu. It's not too late to contribute to a VERY worthy cause, but you can also just show up to cheer us on too!

Have a great week!

Commuting

2007-09-11T20:49:00.000-07:00

Last week, after that unscheduled delay to allow my white blood cells/neutrophils a little extra time to recover, we commuted our way back to chemo-world. And it's taken me a little less than a week to recognize that I am not sure I like that commute. Let's be clear, now, I have had my fill of commuting (to high school, then to college, to work, etc.) having grown up in greater Seattle. And I think I tolerated (even enjoyed) those commutes pretty well. Nothing like having some time alone, in your car, with the music/radio of your choice... traveling at 65 mph, bumper-to-bumper with 20,000 other commuters across the Evergreen Point Bridge on your way to a volleyball practice for the fourth time in a week.

But this last time commuting up to the clinic felt different. To be sure, I am actually volunteering to drive 75 minutes each way (always in traffic, it seems) in order to (a) get the highest quality treatment for colon cancer that I can and (b) to help with a clinical trial determining the additional benefit that a monoclonal antibody (cetuximab) might have over the current gold standard treatment. I do not regret this decision in the least. But I now realize that I am not looking forward to that 75 minute commute, and last week's commute did not feel good to me. I no longer feel completely confident that my body is capable of supporting the treatment each time, though I know that my team of physicians and nurses are carefully watching over my health. I am recovering from the treatments far more slowly than before, and find the tiredness to be unrelenting. And I know that each trip to the clinic is the beginning of another round of fatigue, and interesting GI behavior, and crankiness.

I know that this, too, shall pass. The next five treatments will eventually be over, and I will (slowly?) return to something akin to a normal life. Commuting will only seem to be a hassle again, and something that I am happy to be able to choose to avoid in my life. And eventually our little family may forget how long (and short) this treatment regimen was. But in the meantime, there are those five commutes to endure...

Adequate level of relief

2007-09-06T21:34:00.000-07:00

Today's treatment was almost normal. :) I received all the toxins that were approved, and now am, uhhh, happily? typing up this blog entry to share the good news with my world. Aren't you so happy to be in a virtual world with little old *moi*? Pepe LePew is glad you're here with me!

Details, for all of the curious and detail-devouring people in my virtual and real crowds, include:

(1) Absolute Neutrophil Count (ANC) rocketed up from 1.3 to 1.6... though this is a mixed blessing and is a much smaller gain than I'd hoped for. This key indicator of the health of my immune system needs to remain at 1.5 or higher for treatment to continue, and I imagine that it will drop below 1.5 again next time (Oct. 19, for those of you that are playing along at home). If it drops below 1.5, treatment will again be delayed. However, we discussed this with my clinical trial doctor (Dr. Charles Blanke - very good, but a very busy guy), and he shared that there is are neutrophil-stimulating drugs available (Neupogen and/or Neulasta). Either of these drugs is likely to be able to stimulate enough neutrophil and white blood cell development to allow the treatment schedule to continue at the once-every-two-weeks clip. And hopefully that will mean only a two week cumulative delay before the trial ends in mid-/late November. Only downside - bone pain from making my marrow work overtime to create the additional neutrophils and white blood cells. A mixed blessing, but surely worth the outcome.

(2) In my analytical frenzy after last week's "setback," I closely read the N0147 protocol (that is the guiding document for the clinical trial, and it is supposed to be the "last word" when it comes to dosages, responses to setbacks, etc.) This led to many questions (none of which were really related to the setback, since the standard first response to blood work that does not stack up against the protocol is to delay treatment for one week). So I sent a list of four questions to Dr. Blanke, and included a listing of my side effects. Well, this led to a couple of iterations of answers to my questions (good answers, by the way) as well as some ancillary concern that those side effects had not been adequately documented over the previous six treatments (even though I had shared them, in no small detail, with each oncology nurse before and during each of my infusions). So, Dr. Blanke's clinical nurse and I had a long, comprehensive discussion of said side effects before she could get Dr. Blanke's signature on the orders that tell the pharmacy to brew up my toxin soup. Translation: additional time sitting in the recliner with no chemicals being infused. Made the day longer than "usual," to say the least.

(3) Finally, they adjusted the chemo dosages for the first time since my participation in the clinical trial began. And to be honest, I am not sure that I understand why (a) the original dosages were what they were, (b) why they were changed today and not on every chemo day, since they are based on my body surface area (height in cm times weight in kg times 0.20247) which changes due to weight fluctuations, and (c) what the effect of the decreased 5FU in my pump (4560 mg as opposed to 4800 mg) on my functionality over the next 3-5 days will be. Such an adventure that we are having now! I intend to ask several questions of Dr. Blanke related to this via email soon.

What's it all mean? I need to carefully watch and minimize stress in my life (especially the "little stuff" that adds up throughout the week). I need to rest a lot more than I have been, and minimize potential exposure to colds/infection. I need to find the energy to exercise lightly and consistently, and take more walks in the park. And I need to blog more often to get stuff off my chest... so my lovely wife doesn't need to try to crack jokes in order to lighten me up - let's just say that the stand-up comic industry should not feel threatened. I love that she is trying to distract me, but there has to be a better way! :)

Thanks for reading and encouraging me in all the ways that you do. The comments I received on my last post were amazingly insightful - so thanks for that too! I am glad to be back in the ring with the chemical toxins, and working toward completing this stage of our journey in cancer-world. And I still feel blessed that I am able to make that journey. Peace to you and yours.

Setbacks...

2007-09-02T15:01:00.000-07:00

OK. Last Friday (8/31) was supposed to be chemo treatment #7. Didn't happen. After a friend gave me a ride up to Portland, and watched me get "accessed" through my PowerPort, by blood test results were not what they needed to be in order to meet the requirements of the clinical trial protocol. The key indicator (ANC - Absolute Neutrophil Count) was 1.3 (1300 neutrophils per milliliter) and it needed to be a 1.5. Very disappointing, to say the least. I was hoping that I would be able to power through this whole chemo-therapy thing (just like I have managed to power through all the other challenges that life has thrown my way over the years). As an aside (for all the detail-oriented bio-geeks out there): my platelet, white blood cell and red blood cell counts were steady; I lost another pound (down to 159.3 lbs); I had significant increases in two measures of my liver enzymes (unexplained now, and we will learn more next week when we try to get #7 again); my blood sugar (glucose) was slightly higher; and there was a small amount of lipids (fat) in my blood sample (also unexplained, and to be reinspected next week).

So, #7 is now rescheduled for Sept 6th (Thursday), and then the two-week regimen restarts. One of the greater pains is rescheduling all the appointments...

This setback hit me pretty hard. One of the reasons that my friend took me to Portland was due to the fact that my close friends from college and I were going to Spamalot. What a treat that was (seeing my friends and then the show)! But I was distracted the entire time by this blood test thing. And even though I know (from a factual perspective) that this is not the end of the world, and that things may in fact be better with an extra week off, I felt like I had failed somehow. I am not a fan of failure, even though I have no conscious control over my bone marrow and its ability to produce neutrophils (which are the precursor cells that support the fighting of infection). And I understand, academically, that the protocol is set up to protect the patient (uhhh... me) over the course of the treatment. I am just so looking forward to this stage being behind me.

So, once again I am compelled to remind you friends, family, and Internet blog surfers - get a colonoscopy! It's so much easier than this chemo. And go see Spamalot... those guys are insanely funny.