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

Epilogue

As she watches the sunrise from the end of the driveway each morning, Karen reminds herself of this saying that she's adopted as her own:

“No one knows the story of tomorrow's dawn.”- Ashanti Proverb

(to which she always adds, "I intend to listen the that story for many years to come...")

Karen

September 2007

Silence

Eight months of battle has come to an end. The siege is over, the campaign won. The war transforms from hot to cold with détente on the horizon.

A few tasks remain unfinished. In the coming months, the sally port will be bricked up. Sentinels will be posted and auguries performed to warn of any impending threat. She will stand a five-year vigil in the chapel every evening, lighting a votive like a prayer to ward off the grendel's return.

But these are the duties of a garrison not the deeds of an adventure.

The lists have been disbanded, the debris of battle cleared away. On the bailey tents have been dropped, banners furled and horses readied for the road. Mercenaries have been paid and ride toward their next contract. Friends and allies drift away toward home.

In truth many left long ago, worn by fatigue from endless months of siege. A few never answered the call at all. Some sought answers to unanswerable questions in advance, wanting to know whether the battle would be won or lost before committing their energy behind it. Others waited for a victory celebration without wanting to confront the possibility of defeat.

Only a handful understood that, either way, we endured this adventure with only words to convey our fear and pain, with only words to comfort us. These select were far fewer than I had hoped we when set our feet upon this path. But, like gold, they revealed themselves against the sediment as the water swirled relentlessly around the pan. And remain as cherished as rubies tumbled from a mountain stream.

The dovecote stands empty. All the pigeons have been released, their messages delivered if some unwanted or unread. Only one remains cooing in my hand, waiting for this final missive to be strapped against its leg, waiting for its time to fly. I sooth it with gentle strokes, wistfully remembering its companions before I lift it to the air.

Nothing more to say, I raise her banner one last time and watch the horses retreat toward the horizon. The quietude of night descends like the silence echoing against my ears. Above the gate an armored figure leans upon her spear, her shield slung over one shoulder, her sword still belted to her waist, ready to fight again if necessary but hoping it is not. As twilight deepens and friends depart, she waves farewell and Godspeed. Framed against the battlement, her silhouette sets in my mind as the picture of a hero. A veteran.

A survivor.

© 2007 Edward P. Morgan III

De-ported (unsent)

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

Karen's port came out this afternoon, not for much sawing and gnashing of teeth. Ok, not that bad, but it was apparently reluctant. Fortunately, the surgeon's staff would not allow me to bear witness to the blessed event though I did see the aftermath. Uncomfortable, but not too painful as it was described. At least it could all be done in the office and didn't take much time.

She has three stitches that come out next Wednesday, the day before we leave for Atlanta. This kind of closes the chapter on all but the maintenance for us on this adventure. We celebrated with a frosty Starbucks frappaccino on the way home.

As an added bonus, we don't have to show documentation for the port to Homeland Security during the scans at the airport. And I was practicing my top three things NOT to say it was on the way home. It's a less than one gram, non-felony cocaine smuggling container. It's the detonator for the two pounds of plastique she had surgically implanted in her left femur (funny, the scan should have set that off). It's a direct brain stimulation device to control her psychotic alternate personalities (tap, tap, I think the batteries are dead). Yeah, those guys don't have a sense of humor. No, I don't mess with them. They have guns, and the personality to use them.

Forgive me, I'm a bit punchy from having all this over and done, and from being worried from not knowing exactly what to expect as the appointment approached. But it's out. Yeah!

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

Ultrasound

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

Went down and got the ultrasound done. Everything looks good. It looks as though what we felt was a lymph node (though neither doctor thought it would be). So no problem. But boy did going back to the facility to get it done put us both back where we started in December. Initially, they didn’t want to let me come back, but changed their minds once they figured out she was in for an ultrasound not a mammogram. We did get some lunch out together before we came home. Karen is headed back into work.

Tuesday, Karen gets the port out. Then probably a follow-up from that a few days before we got to Atlanta.

We're planning on going to a movie on Sunday (Stardust) with some friends. Other than that, no real plans for the weekend.

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

Appointments 4

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

Made it to the follow-up with the radio-oncologist this morning, not without difficulty. I got in my Jeep and clutch pedal went straight to the floor. No hydraulics.

Karen's appointment went fine. No new information. He wants to see Karen again in 3 months, then every six after. He wants a mammogram about 6 months from November, her next scheduled one. Right now, she has follow-ups with all three doctors (surgeon and 2 oncologists) within a week in November. Plus her gyn in September. Plus I'm sure our primary will want to see her at some point. Never ending. But the radio-oncologist did say that while he would normally see her every 3 months that since she was seeing the medical oncologist every 3 that he could go with every 6 for the next couple years. At least she has a lot of eyes looking out for her.

He felt the thing Karen is getting ultrasounded tomorrow. He wasn't concerned as it moved with the scar and he thought it might be consolidating scar tissue or a pocket filled with fluid. Nice to hear, but I am still very nervous. This all started with an ultrasound. I can tell how much it's bothering me as I haven't been real good on sleep or productivity this week.

I'll let you know how it goes.

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

Appointments 3

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

Karen scheduled with the surgeon for the port to come out next Tuesday, 8/21. It's done in the office under a local. Doesn't take any longer than a normal appointment. I think I'll wait outside on that one, if I have a choice, which I probably won't. She'll probably want me there. I'll go with her (or drive myself and meet her) to go to the other appointments this week. We have to sort out those details yet.

Talking to the doctor yesterday, he mentioned that he spent last night writing a letter to Washington to express his concern about groundwork being laid for what he saw as a two tiered medical system in this country. He was concerned about the rules for Medicare being talked about which drop the standard of care back 10 years. He believes that private insurance will quickly adopt similar rules leaving only the very rich able to afford some of the care given today. He said he didn't classify himself in that category. Scary.

I'll let you know how Thursday and Friday go.

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