Cancer101 Cancer Planning

“There are wedding planners and baby planners; why not a cancer planner?”

That’s what Monica Knoll thought as she struggled through years of managing her own cancer, and that thought led to her design and launch of the nonprofit and web-based, Cancer101.

Knoll was motivated to find and found a new kind of resource for people going through lengthy cancer treatment as a result of the way her work and career were impacted by first breast cancer and then later ovarian cancer. She found quickly that cancer stigma is strong and persistent in the workplace. Juggling cancer in the long-term is a challenge to workers and workplaces. Hence Knoll’s creation.

Do take a look at: http://www.cancer101.org/

 

Good Friday

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd.

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…” That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian. Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures. As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

The "C" Word

Oh no, oh yes…the “C” word again.

Last week I was at an oncology-hematology center that is near where I work. This time I was there for me. It just happened to be the most convenient place to have some blood work done that my doctor requested as part of my annual checkup. But what was I thinking? It’s a chemo place! And it had all the same sights and sounds and smells as the place that I went to with John for 16 months. I had so underestimated the impact and so did not understand how much creeping trauma I was still carrying around just based on that environment.

But I did my time in the lab and had to wait for the nurse so I did what I always do—I raided their magazine stash. Same stuff: CURE Magazine, Breast Cancer Magazine, Your Chemo Today—why would anyone want to read that stuff? But read I do and so I pick up “Your Guide to Chemotherapy” because on the cover it said: “Sex, Intimacy & Cancer” and I thought, “Hey, here it is the article I have been waiting for.”

But sadly no. The article about Sex, Intimacy and Cancer was about—yes—the “C” word: Cuddle. More bad guidance from Cancer Land where everyone cuddles and no one gets laid.

I really hate these chemo-cuddle stories. They are infantilizing and demoralizing. I know they mean to be helpful but I just gotta believe it would be so much more helpful to say, “No stiffy? Here’s what ya do” or “Your partner may need to F*** like a bunny just to feel alive so go with the flow.”

Here is a maybe 600 word article on SEX and not once do they use the words penis or vagina. That is just sad. What it says to readers is, “Not only do you have cancer but we think you are stupid too.”

And—I’m steamed up here—“Taking a long walk together” is NOT “part of sex”. Unless, that is, you are walking to the porn shop or to the bed room in a really big house.”

Love in the Time of Cancer

Here is a true story of Love in the Time of Cancer. This is from today's New York Times from Tara Parker-Pope who writes the "Well" column in the Times' Health section. This inspires humility. Not just two cancers but a baby too. Click below and read on:


http://well.blogs.nytimes.com/2011/04/11/a-couples-knot-tied-tighter-by-dual-diagnoses/

Slogans for Caregivers

I’ve been thinking about slogans this week. We use slogans in 12-step programs and Buddhist tradition uses slogans to teach the Eight-fold path. Self-help uses slogans and bumper sticker sayings as reminders. The power of a slogan is that it is memorable and if practiced it can kick in just when you need it.

So what would be good slogans for caregivers? A couple that come to mind right away are: Put on Your Own Oxygen First (when you want to do one more thing) and Ask and Ask Again (dealing with doctors, nurses and health insurers) and Tell Someone the Truth.

That last one is lifesaving because every caregiver has to have someone—not the patient and probably not even a family member --that they can tell their darkest truth to—all the scary yucky feelings like anger, resentment and wishing the patient would die. (Don’t believe a caregiver who says they have never had that thought—you are obviously not their “someone”.)

Something I heard this week that could also be a caregiver slogan is Whose Need is It? This is one I could use often I think to decide if I’m asking something of the patient because I have a need for their presence or to decide if they actually are the one who has a need for mine. It helps to keep expectations a bit clearer and maybe that would help the anger and resentment to decrease.

Taboo and Curse

Reading more of James L. Kugel’s wonderful book, “In the Valley of the Shadow”. He weaves together theology, religion, research and his personal experience with cancer. In a fascinating chapter about the role of omens and taboo practices in ancient cultures he bridges back to his illness and the experiences in our culture around cancer. He writes…

“In fact, almost the sole remnant of that very ancient mentality in the world today is the way we feel about cancer; it is still potent magic. In many languages, although the word cancer is well known, people avoid using it in ordinary speech. “He’s very, very tired” they say in my in-law’s part of France, while, “He has the sickness” is common in Israel, and no doubt elsewhere. Saying the actual word might cause it to come into existence—in you or in the person you are talking to—or, at the very least, it may hasten the end of the person you are discussing.

Until recently the New York Times obituaries would say, “…after a long illness.” Doctors themselves try to let patients down easy by avoiding the C-word, or even “tumor” instead what is discovered is “a slight growth”, “an unusual polyp” or “an irregularity that should be checked.” Despite all clinical evidence many people still avoid shaking a cancer sufferer’s hand.”

In the Valley of the Shadow

I’m reading theologian James Kugel’s new book, “In the Valley of the Shadow” in which he examines the state of mind and sense of human smallness that comes when one is diagnosed with a serious illness. Fascinating that Kugel’s response to his own terminal diagnosis is his choice to follow and document his own thoughts and changed sensibility. A scholar, thinker and theologian even unto death.

There are many wonderful things in this book. Part of what stands out is how Kugel’s awareness of himself and others shifts as his illness proceeds. Here is an example:

“Most people, when they see someone ravaged by chemotherapy, just tend to keep their distance, and I suppose that my colleagues, experts in ancient and medieval religion, were no exception. Fear also plays a role. “That could happen to me” is rarely spoken but often thought. If people do talk to you about your condition, they usually get around to asking you what your first symptoms were---this could be useful information, after all! Some are also eager to discover something in your family history or some aberrant feature of your diet or daily regimen that can be blamed for your catastrophe while leaving them in the clear…All this, I’m afraid is merely human.”