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.