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

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Then I looked out toward the ocean again, and saw that the water on the beach had withdrawn far out to sea, and could not be seen even in the distance.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.

Saturday, April 6, 2013

Guest Post: Becoming a Caregiver - How My Wife and I Dealt With Cancer

The following blog post was written by Cameron Von St. James, and I am posting it here at his request. It is a story of hope, and struggle, and persistent love, and honesty in the face of bad news. For those of you that want to contact him, please consider his blog (

In sidebar news, I am still "NED" but we are monitoring my insides every six months via CT scan and I meet with my liver surgeon and/or oncologist every three months. For now, all systems are "go."

GUEST POST: "My wife has often said that she has no idea how hard it was for me when she was diagnosed with mesothelioma. I still remember that day like it was yesterday. It was three months after Heather gave birth to our daughter, Lily. Those three months were filled with hope and joy and happiness. All of that was stolen from our lives when Heather’s doctor looked at her and told her about her cancer. I remember wondering how we were going to get through this.

I was angry. I was so angry that sometimes I was only able to use profane language to communicate. I quickly realized, however, that I needed to gain control of my emotions and be strong for my wife. She needed someone with optimism and strength; she needed me to be her rock. It wasn’t easy for me, but I managed to do it. This time in our lives was very difficult and very busy. I was overwhelmed with all the responsibilities that I’d been given. I was working, taking care of my wife and daughter, making travel arrangements, and taking care of our pets and home. If it wasn’t for all the help our loved ones offered during this time, I’m not sure how I would have made it through.

Of everything we endured while my wife suffered from cancer, it was my two-month separation from Heather and Lily that was the most difficult on me. Lily was in South Dakota with Heather’s parents, while Heather and I were in Boston for her surgery. Heather left Boston and flew to South Dakota to be with Lily and her parents for her recovery immediately after her surgery. She needed the recovery time to prepare for her next phase of mesothelioma treatment: radiation and chemotherapy. Because I had to stay behind to work, I saw Heather and Lily only one time. It wasn’t an easy decision to make, but we had to do what was best for our family. Fortunately, we had Heather’s parents in our lives to help her with Lily and her recovery so that I could work to continue supporting our family.

The one time I saw my wife and daughter was when I drove 11 hours in a snowstorm to see them. I left Friday after work and had to be home in time to go back to work on Monday morning. The trip was long, exhausting, and entirely too short. I was only able to spend Saturday and a few hours on Sunday morning with the two of them, before driving back home for work on Monday.

This was not an easy time in my life, but it was something I don’t look back on with regret. We were very fortunate to have the ability to make the decisions we made. All the help that was offered to us was invaluable, and it was because of this help that I was able to prioritize the many things that needed doing and help my family. What I learned most was that I had to accept help as it was offered to me. Without this help, I don’t know what we would have done.

When Heather first received her diagnosis, we learned that most mesothelioma patients typically have a life expectancy measured in months. It was difficult to hold on to hope when presented with information like that. However, my family stuck together and stayed strong, and Heather has defied the odds. After intense treatment and with a never-give-up attitude, months turned into years. Heather is here, healthy and cancer free, over six years later, and we couldn’t be more thankful for the second chance we’ve been given. Heather has been able to watch our daughter grow up, and our lives have returned to a state of relative normalcy. We hope that our story can be a source of hope and optimism for people currently struggling with cancer."

- Cameron Von St. James