"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.

Autopilot?

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

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

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

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

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

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