Introduction: You Are Always the Hero of Your Own Story

----- Original Message -----

Subject: Thanks to All

Sent: 8/2/07

From: Karen

Hi to all,

I just wanted to thank you myself for being there and for joining us along this journey. And I want to thank Edward the most for being the best friend and husband ever. Words can't express how grateful I am for everything he's done and the support he's given me during this tough time. But mostly for sending out all those messages for me, when I was too tired or too scared to do it myself. When this started I didn't have the words and he stepped in to fill the gap. By the end, his was the voice that could say it best... I hope we didn't pester you too much with our messages.

I helped Edward with the list of thank you's. We hope we got everyone. But if not, then thank you for what you did to help me through this. What comes next will be easy compared to what we've been through so far.

So with that, we sign off.

Thank you again.

Karen

----- End Original Message -----

Just over three years ago, I received this message from my wife, Karen. That day she received her final radiation treatment for the breast cancer she had been diagnosed with eight months before. With that, her overall course of adjuvant therapy was complete.

In the preceding months, she had been through three surgeries, eight rounds of dense-dose chemotherapy using three different drugs, 33 radiation treatments (including 5 high-dose) and blood tests every one to two weeks. Her doctors included a surgeon, a medical oncologist and a radiation oncologist, with her primary care physician and gynecologist standing by. Briefly, there was an in-home nurse. Her prescriptions at various times included painkillers, steroids, red blood cell boosters, white blood cell boosters, sleep aids, antihistamines, anti-nausea medications and laxatives.

Sound a bit overwhelming? At times it was. But we were lucky. Karen responded well to treatment, both physically and mentally. With the exception of a couple side effects, today she is fine.

Back then, we had no way to know how events would turn out. When she was first diagnosed, I knew we were in for a long-haul journey, the kind from which you remember each grueling step for years. The kind that required more than just walking the physical path to make it through.

My first goal was to support her. I could make the fight easier, but could not fight the battle for her. I could take care of her, cook for her, shop for her, maintain the house and the cats for her. I could keep an appointment schedule with her, listen to the doctors with her. I could hold her hand, and sometimes her head. I could threaten to kick my neighbor’s ass if he woke her up after chemo again with his stereo blaring profanity-laden rap music.

Those were the physical things I could do to help her. But the physical is only half the battle. The mental component is just as necessary.

When we first announced Karen’s diagnosis to friends and family, many asked what they could do to help. “Be there,” was my one consistent reply. Stay in touch. I felt I had the day to day under control. And if I didn’t, I already knew who would be first on the list to call. Fortunately, I never needed to.

But I also knew from experience that not everyone would follow through on that simple request. In fairness, no one’s life stands still for 8 months or longer. Everyone has their own day to day crises to deal with.

Still, I wanted to fill in the gaps that I knew inevitably would open. I also wanted to update the people who had asked to be kept informed. I knew that fell on my shoulders. Karen would have neither the time nor energy on most days. Finally, I wanted to express what I saw and felt as we went through this. From the beginning, Karen encouraged me to write about it. It was either that or stand in the backyard screaming.

But this is not my story. All you really need to know about me is that I’m a fighter, a problem solver, a role-player and a writer. I prefer to be proactive as it gives me a sense of control.

As the situation unfolded, it quickly became clear that control was going to be in short supply. In Karen’s situation, it becomes easy to see yourself as someone things happen to, not someone who has any influence over how events turn out. Any expert will tell you that is a deadly mindset for survival.

I wanted Karen see herself as a person who still had a measure of control. It’s not that I doubted her ability to survive. I didn’t. She’s tougher than I am. I wanted her to see herself as the fighter I knew she was, a hero not a victim.

Many people compare cancer treatment to a journey. From the beginning, I saw it more like an adventure. Not the kind you read in novels, the kind that really happens, complete with hunger and sickness, soreness and sleep deprivation, rain and wind and cold. The kind you don’t know how it will turn out.

As Karen progressed through treatment, I sent out two kinds of messages, real-world “treatment updates” and creative “essays” in the form of fantasy adventures. The updates told people what was going on day to day. The adventures were re-imaginings of what we were going through in a fantasy setting. Karen has always read fantasy novels. These messages were my gift to her, stories to entertain her during treatment as well as communicate what she was going through with friends and family. I hope they do the same for anyone reading them today.

I’ve marked each message with one of those two tags. To that I have added two “guides” one for symbols and another as a glossary. Several people who read them told me their dictionaries got a workout. I’ve also posted each message with the original date it was sent so that they each come up in order, oldest at the bottom with the exception of the final essay, which I wanted to come up last. They can be read in any order you want. I’ve only edited the original messages for obvious typos and mistakes.

So why am I posting this archive now? Since 2007, I’ve wanted to make it available to others affected by breast cancer, both as patients and caregivers. It took so long because rereading it is still difficult for me even though everything turned out ok. I still choke up as I remember. My eyes still well with tears.

The road is long and sometimes hard. I only hope that this archive will help make someone else’s journey a little easier, their burden a little lighter, and maybe provide them with a map. In other words, I hope it helps whoever reads it as much as Karen says it helped her. I suspect if you’ve read this far, you are either on her same road or know someone who is.

If so, I would like you take away at least one thought from these messages: You are always the hero of your own story. You may not have a choice in how your life unfolds, but you always have a choice in how you react. Sometimes, that can be the difference between surviving and not.

Best of luck and Godspeed upon your journey, wherever it may take you. I hope Karen’s and my experience will help you a little along the way.

Edward

September 2010

Karen 2010