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

Sunday, February 20, 2011

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.

Thursday, February 17, 2011


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.

Monday, February 14, 2011


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...


Wednesday, February 9, 2011


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...

Sunday, February 6, 2011


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

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

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

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

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

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

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

Saturday, February 5, 2011

Light and tunnels and light

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

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

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

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

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

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

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

Tuesday, February 1, 2011

PowerPort particulars

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

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

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

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