Inside Ed.

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

Sunday, November 2, 2014

Our Walk of Life

[Catchy organ music intro] "Here comes Johnny singing oldies, goldies. Be-bop-a-lula, baby, what I say..."

I love that song - more so now than I suppose that I did in the 1980s when it came out. At that time, I was just finishing my undergraduate degree, and was hanging out with my volleyball friends a lot. MTV was a new thing, and the songs that were being "video-ized" were pretty popular. Mark Knopfler and Dire Straits put together a video that showed sports players' bloopers with his music playing in the background. I found it to be both funny and refreshingly unlike the other videos being shown - of bands playing the music live and trying to tell the story of the song in snippets, or even creations where the artist lip-syncs to the lyrics while "acting" then out. He was different, and imagined a wonderful walk of life that sometimes went awry.

I like it now for the memories of my life that it provokes... of many evenings with those volleyball friends in a bar called Dante's on Roosevelt in Seattle's University District - the smell of cheap beer (Tuesdays were $1 pitcher night!), the old video games that ate more quarters than they registered for play, the abused pool tables. We had some marvelous (though tipsy) times in that place, regardless if we won or lost. I wonder what Dan, Nebosja, Jim, Katie, Pam, Micky, and Bunny are doing these days...

Sometimes that walk of life is a trudge. Other times, it is skipping and laughing and burbling along. But we only get this one walk, and to me that bears remembering. Maybe I have said stuff like this before, maybe even in this blog (truth? I have not gone back to read through it... hard walk, that). But I felt like I should recall that we daily choose the path and the tempo of our walk. That we are not walking alone, and that the pace changes regularly. So, today, let's make the walk purposeful.


[Catchy music continues... "Here comes Johnny gonna tell you a story - hand me down my walkin' shoes!"]

Sunday, October 26, 2014

Cancer bloggers

We all know who we are. We have been through a scare or two, and we think that perhaps there is something personal that needs to be said - for family, for friends, and even for the "just curious" out there in the worlds of the Internet. I am guilty of lurking my way into other cancer patients' and survivors' lives through the pains and fears, joys and triumphs, and even tragic losses that we post.

So, what is my point? Not sure, except that I still find myself drawn into some of these stories - almost like they are chapters in a novel. "Ed has a mostly normal, mostly carefree, mostly OK life and then "BAM!" cancer appears." Insert stages of grief, frantic internet searches for information about [fill-in-the-blank carcinoma, melanoma, etc.], tears, stoicism, decisions, fatigue, surgeries, injections, nausea, more tears, and so on. It is a consuming story, punctuated by sometimes charming or poignant insights, and sometimes those are recorded for some kind of posterity in a blog.

When you are following a cancer blogger, you engage in their dance with death. For a person diagnosed with cancer, well, for this person at least, that reality forces its soulful way into consciousness rather quickly. I remain hopeful for my longevity, but still harbor a suspicion that the proverbial "other shoe" is hanging in the air, ready to drop. Maybe that is what other survivors think too?

So when I see a blog "go silent" I worry. Recently, after a several month hiatus, a blog-friend posted anew to her blog. It made me happy. So, in the spirit of happiness, I plan to write here more often.  I-know, I-know, I wrote similar words before, but now I mean it. I will try for weekly at first. Call me on it!


Sunday, October 12, 2014

Latent cancer ravings?

Hello to blog-land... yeah, it's been a while. Not been up to much, you? It's been such a long time, and I really do miss your smile...

Wait, hold on - no ripping off cheesy lyrics from 80's songs. OK, well, maybe...

A dear friend claims that she checks this blog for posts in a manner that could only be called religious (or maybe obsessive). This is mostly a test to see if her claim is true (you know who you are!) But at the same time, I am feeling a little anxious about my upcoming CT scan and CEA tests. You see, there is a pattern to my interactions with colon cancer - a periodicity of four years. Now I will grant that I have only two data points (March of 2007, and then January of 2011), but if that serves as any kind of predictor then we are looking at cancer detection in say, November of 2014. This is right around the proverbial corner. Alas.

So, the next month or so will be filled with varying levels of angst. I have a very distracting (and somewhat stressful) job these days - which is both good and bad. And I am still nursing a "broken" thumb (though it may actually be a detached tendon). EASY to forget the pattern, right? Oh, and my friends and family are always here for me.

We may be having our last throes of summer today and tomorrow. So - there's a warm wind blowing the stars around. And I'd really love to see you tonight.


Thursday, August 15, 2013

How not to say the wrong thing...

I usually steer clear of re-posts, but this one is too good to pass up.

I hope that I can remember the "comfort in, dump out" mantra whenever I am in a position to: (a) not be at the center of the attention,  and (b) interact with my many survivor-friends. It is so easy to forget that we are fragile humans, but we are especially fragile when an unexpected illness takes over the world that we know.


Monday, April 29, 2013


Last night I had a memorable dream - memorable for two reasons... (1) I do not usually remember my dreams (or if I do they quickly fade away), and (2) I seem to have a context for this one that is poignant. Wow, with a lead-in like that, this sounds like it's going to be a good one... So, let's go!

I dreamed that I was on a sunny beach with my daughter, and that we were playing in the surf. For some unknown reason, we were both surfers and we were playing in some gentle waves - but not really surfing. Suddenly, I noticed that the waves are getting a bit bigger, and that we could actually surf on them. One or two of the bigger ones rolled by me, as I was out a few hundred feet, but then I managed to time a wave and "belly-boarded" my way all the way in to the beach itself. Exhilarated, I stood up and looked around to find Julia, but she was nowhere to be seen.

Then I looked out toward the ocean again, and saw that the water on the beach had withdrawn far out to sea, and could not be seen even in the distance. Hyper-concerned now, as I recognized the tell-tale evidence of an approaching tsunami, I shouted that we must get off the beach. I then yelled for Julia, and saw her up above the beach on a small bluff running down toward me. I yelled and pointed for her to move up and away from the beach, which she understood and started to do. We would meet up off the beach. Then I tried to get myself off the beach by jumping up to grab at a knotted rope, and began to pull myself up. I was struggling, but making progress, when I wondered if I would be able to put enough height distance between me and the beach before the first tsunami wave arrives...

And then I woke up.

That was a pretty powerful dream. Some rudimentary after-analysis quickly points out some serious factual issues - like, I have no idea how to surf (or even bellyboard), and Oregon's offshore areas are quite steep so the water would not disappear like it might on a shallower beach, and the water is too cold for me to ever want to put my whole body in it anyways, etc. But dreams are rarely true depictions of a reality, right?

This morning I had a routine CT scan scheduled – of the “every six months” variety. And while I have no symptoms that would indicate that anything is amiss, the idea of another cancer recurrence somewhere in me has the feeling of a pending tsunami. It has been over a year since my last chemotherapy treatment, and over two years since the metastases showed up in my liver. But I am anxious about the effect a recurrence might have on me and my family. We are just getting to a place that seems normal again.


Saturday, April 13, 2013


Over time, and I am happy to be able to continue saying that, you discover that human suffering is ubiquitous - that each day there are new struggles to overcome, and news of others that are now traveling the difficult roads of health challenges. Dear friends and family are struggling against cancers, against relationship challenges, against accidental injuries. For me, these are additional reminders of the fragile connections between us, and the most beautiful and tenuous link that we have to this existence. Life is such a short and rich journey.

Years ago, an aggressive throat cancer took a beloved aunt-in-law from my experience of this world. Taken long before anyone expected, Teri left a gaping hole in many lives. We traveled far to support her in her fight... And it was a fight. She had to have aggressive radiation therapy - with a hard plastic mask to help ensure that the radiation was targeted precisely each time. The cancer made it difficult for her to breath and to swallow. It was a difficult visit for so many reasons.

I remember several scenes so vividly. This was Toronto in the winter. There was snow, though not much. It was cold and sunny. I walked around the area of the hospital, and in a small music shop heard (and purchased) my first Eva Cassidy CD. Eva was from the Washington, DC area... her voice was beautiful, her covers of existing music fresh, and her range of musical interest broad. I did not discover until later that Eva had died in 1997 of melanoma. Her wonderful bright music haunts my memory of Teri and that miserable time in Toronto in early 2001.


Sunday, April 7, 2013

How are you doing?

So... here we are... it's been about fourteen months since my last blog post, and the silence has been both welcome and worrisome for some of my readers. Many (rightly) have assumed that no news is good news, but there are others that seem to ping the blog every so often and need to know what has been going on.

We are maintaining a watchful attention to my insides. This entails a monthly visit to the oncology nurses to flush out my Powerport. Every three months, I see either my oncologist or my liver surgeon for a brief physical exam, and every six months (just before the meeting with one of the docs) I have a CT scan of everything from my neck down to my groin. So far, no evidence of disease from the two scans and four blood tests from 2012. My first CT scan of 2013 is scheduled this month.

These semi-constant reminders of my physical mortality can be uncomfortable. The palpable feeling that I do not control the length of my stay on spaceship Earth is hard for me. But it is also hard to try to control too many things about living a life. I am exercising regularly, and plan (again) to conquer some challenging bike rides this summer. I am in either a spin class or weight training four-five days each week, at what some consider to be an ungodly-early hour (5am-6am each morning). I am trying to eat a mostly vegetarian diet, but my surgeon has suggested that I may need to eat animal protein regularly if I expect to be a healthy cyclist. His point is that I am not a "religious" adherent to the vegetarian philosophy and may be unable to provide all the nutrients an athlete needs by eating a non-meat diet without a lot of commitment and education. And he is right, in that I am unwilling to do the "all-in" commitment that vegetarianism and high-performance cycling demand. So meat has re-entered my diet to a small degree. Mostly animals that are locally-grown and fed a "natural" diet.

I find my work challenging, but also find myself ready for a change of scenery. I am not sure what that will mean, or when it will play out, but it is on my mind.

Family drama is mostly absent these days, though life with a teenager has its ups-and-downs. I remember the thoughts of willfulness and worldly knowledge that I had 35 or so years ago, and try to keep perspective on things. It is not always the easiest thing for me to do, though, and I need to work on that continuously. While being a parent is very rewarding, it is not for the faint of heart.

Bye for now. I will try to come back more regularly. Namaste.