Sunday, September 13, 2009

Welcome to Cancerland

Yesterday I spent about an hour on the phone with a gentleman I have never met, but whom I knew immediately after reading a brief message from the friend who connected us:

Hi April, I have a friend who was diagnosed with what you had. Is it ok if he emails you?


[For the record, what I have (present tense) is multiple myeloma, which is bone marrow cancer. Although considered "manageable," myeloma is incurable. It is unlikely that a cure will be found in my lifetime, whether I have one year or two hundred years left. That's the reality of cancer in 2009. While the medical profession understands many manifestations of the disease more than ever before in history, and many people live longer than ever before after being diagnosed, the progress made in eradicating cancer of all types has remained pretty static over the last 40 years.]

But I digress. This is about welcoming a fellow traveler, who goes by the nickname "Sam," to the shores of a land he never wanted to immigrate to in the first place. I was the welcoming committee for this new arrival at the gates.

Welcome to Cancerland, Sam.

Sam has only been recently diagnosed and like everyone else out there who has ever heard a doctor say "you have cancer," was still reeling from the hastily arranged journey. No one gets first class accommodations on the plane, train, or automobile trip to Cancerland. Heck no, we are stuffed into steerage, crammed into coach, or made to sit in the jump seat of a too small truck cab while we head to our destination. We arrive dazed and bruised and wondering where our luggage is, if we had a chance to throw anything on the baggage cart before boarding the Cancerland Express.

I made that trip almost five years ago. I remember the dizzying pace and disorientation. So yesterday's phone call, with its jumps from this here to that way over there and then back to this other thing here, made perfect sense to me.

Our conversation was held in both English and Cancerese, a dialect spoken in Cancerland. For those of you not familiar with it, here are some translations of yesterday's phone call.

"I was told I should learn as much about this disease as I can, so I am familiar with the treatment options. Was that your experience?" (Translation: Where do I go for language lessons?)

"Treatment is so very expensive. What was your insurance experiences?" (Translation: What is the currency exchange rate here?)

"Did you have chemotherapy?" (Translation: Is it safe to drink the water?)

"How did you learn you had cancer?" (Translation: How did you arrive here?)

"What is your life like now?" (Translation: Is there a curfew?)

We talked.

And talked.

And talked.

At times, Sam's voice broke and he apologized for being emotional. No, no, I said. Emotional is okay. Your life has been turned upside down.

Sam is 50 and has a five year old child. I was 48 and had two sons who had just started college and high school respectively. "I didn't know if I would live long enough to see them graduate," I told him. That was when my voice broke.

In talking with Sam, I was reminded of my first brutal days in Cancerland. They came back to me last night as I was falling asleep. I remembered being so ill and worn out that I could barely get up in the morning. I remembered the cold dread of the computer screen at 2:30 a.m., when the Google hits for "myeloma" turned up words like "terminal," "poor prognosis," and "less than five years."

I remembered the difficulty of telling people I had cancer: not because I wanted to hide it but because I knew that I was about to hurt people with what I had to say. One close friend stopped me mid-telling and said "I have a feeling I know where this is going and I don't like it, but keep talking." I remembered my son Sam, who was all of 14 years old at the time, saying "I'm not surprised. I've been thinking for a couple of weeks it was cancer or something."

But I also remembered the gratitude that has never ended. I had family and friends and colleagues who immediately formed ranks around me and did not break. I had a woman my parents' ages, who I barely knew from my childhood, contact me within days of my diagnosis. She was my welcoming committee. Edna and I became close and stayed close until her death from myeloma last October. (In writing those words, I have a sudden catch in my throat at remembering how much her words and friendship meant to me and how much I miss her yet.)

I spoke little of this to Sam when we talked yesterday. Although we all live in Cancerland and share many experiences, each of us sees it through the eyes of our own life. He will have his own Cancerland experiences to share in months and years to come.

I did tell him that I was changed by cancer and not the same person I was before I got the news. Sam immediately said, almost eagerly, "yes, yes, I know what you mean." (Translation: So this isn't just a delusion?)

One of Sam's questions for me yesterday was how I went about telling people about my disease. (No translation needed.) I told him I had told some family and close friends first. I also explained that I lived and worked in a close-knit community and that the news traveled fast.

"And then I went and held a huge party."

My answer caught Sam so off guard that he laughed out loud. I think the word "party" was the very last thing he expected to hear. I told him that I wasn't about to sit around and wring my hands after I got the diagnosis. So a month or so after those irrevocable words, over one hundred thirty people packed themselves into my apartment and we laughed and talked and ate and drank and partied all evening. I told Sam that the friend who connected us, Sherry, was at that party.

It was a great sendoff party. It was the only way I could move to Cancerland.

Every day in this country, some 3500 people, ranging in age from newborn to elderly, are diagnosed with cancer. I don't know what the global figure is; the American number is staggering enough. To make that number real to me, that means that every nine days, enough individuals have been diagnosed to populate the town I live in.

That's a lot of people.

I moved to Cancerland on November 10, 2004. My friend Myeloma Larry (to distinguish him from another Larry I know) moved there a few years before me. Earline arrived about the same time I did. Edna no longer lives here, but I remember her every day.

There are lots of good folk who live here.

And now Sam has joined us. Welcome, Sam, welcome.


Sharon said...


Thank you for sharing this. It must be so scary to "arrive" in Cancerland. I'm hoping those bleak statistics about not really making headway for a cure for cancer changes...soon. I'm sure you helped Sam tremendously.

You are truly inspirational...

Arlene said...

Your 'bon voyage' party established in me the courage I needed to face my own medical disaster. Your words, your attitudes, your example helped me overcome a difficult hurdle and move on to a different way of living. Granted, my life is away from Cancerland, but it does offer its own challenges. For sharing your story... more importantly, for sharing yourself, April, thank you.

Captain's Wife - Jennifer said...

My God, I adore your writing. I could read you all day! This is so beautifully written. I had goosebumps when I read it. I was so thrilled that you threw a party! And thrilled to understand about the welcoming comittee to Cancerland and the translations. Wow. I am just in awe. Sending you huge hugs are amazing! :) Thank you for sharing yourself. With us as well as others in your shoes. I think that is the best thing that can come out of such a terrible help others who are facing it too, to comfort them, to let them know they are not alone. Something about that completes the human experience I think. I can't explain what I mean by that, but it makes my heart sing! :) (((hugs)))

Ellen said...

Today I took my friend that I'd emailed you about to her radiation treatment. Thank you again for all your kind words of advice.