Mele Kalikimaka, part deux

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

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...

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...

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

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)

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...

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?

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...

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

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...

...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

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...

...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

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

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

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

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

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

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

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

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

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...

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...

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

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?

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...

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

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..."

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

(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

(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...

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...

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

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...

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

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

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

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

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...

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

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

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?

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...

... 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

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

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

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

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

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.