My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, October 25, 2007

Appendix cancer patients and the general public

Since publishing my web site and contact information in May of 2006, I've communicated with almost 300 people diagnosed with appendix cancer.

There are some things we with appendix cancer are commonly told by those in the general public who learn of our diagnosis. These statements are common ones that have frustrated many I communicate with.

  • "I've never heard of appendix cancer, but it can't be too bad, can it? I mean, don't they just remove your appendix? You don' t need your appendix anyway, you'll be fine!"

    I tell those people it's similar to ovarian cancer in that by the time there are symptoms and it is discovered, we usually have advanced cancer, it has spread beyond our appendix. We are usually diagnosed at Stage IV, the worst case scenario for a cancer diagnosis.

  • "Let's celebrate, you've recovered from surgery and finished chemo! Now you can go back to your normal before-cancer life , the tough part is over!

    Actually for most of us, after surgery and after chemo is when the tough part really begins. Those around us don't understand that, at first even we don't understand why we aren't happy and feeling great.

    Chemo and surgery were our tools against the enemy, cancer. Now we are vulnerable and afraid, we know how quickly our lives can change and we don't trust the future anymore. We don't know if cancer is hiding and waiting to attack us again while we are defenseless.

    We are kind of in an after-hurricane state. During the storm we fought and struggled and worked to survive, now we are surrounded by the aftermath of the storm, the scattered pieces, the need for reconstruction. We don't know if and when another storm may hit and we can't move to a new state where there are no hurricanes.

    In many cases, weathering the actual storm was easier, the clean-up is the hard part. And as in the aftermath of real hurricanes, the clean-up can take years.

  • Another sort of frustration many of us have is listening to others say how lucky we are to have received treatment, to have not died of our cancer, to have survived the surgery, survived the chemo. We are expected to be happier, more humble, to have more gratitude, to value our lives more, to appreciate living more than those around us. Aren't we the luckiest people in the world?

    It reminds me a bit of the book "Lucky" by Alice Sebold. Alice was raped, but was told she was "lucky" to have only been raped and not to have been killed. We are "lucky" to have not died of cancer. As Alice recounts in her book, many of us struggle with emotional issues long after our "lucky" incident.

    The truth is, sometimes we wonder why those who have never experienced cancer-- those who have never had to fight the battle-- don't hold themselves to that same standard, or actually to an even higher one. They've received all of those same blessings without having to struggle or fight or face the storm. They are truly the lucky ones, the blessed ones, we often feel.

It's not that the people around us don't want to understand or try to help, it's just that in some ways they can't relate to us as they haven't been where we are. That's why those of us in the cancer community need each other. My offering my web site to the world has had the great benefit of my being able to give support, but also of my being able to receive support from others diagnosed with this cancer. It's been great, I thank all of you.

BTW, the color for the appendix cancer ribbon is amber (for those who write and tell me how tired they are of seeing pink ribbons :-). One woman I communicate with wants to start making amber ribbons, and if she sends a bunch to me, I will mail them to anyone who asks for free until they run out :-).

Saturday, October 20, 2007

Coping Mechanisms

This may be a little bit off topic, I'm not sure, but I was thinking tonight of coping mechanisms.

All of us with a cancer diagnosis have the same feelings at first..shock and numbness at the reality of what has happened, then fear at the potential for all we have to lose...the people we love, our futures, our dreams, our hopes, our homes, our routines, our aspirations....so much potential loss faces us all at once. Then we do the frantic search for information, for hope, for survivor stories, for surgeons and facilities and doctors who know what to do with us.

Cancer envelopes, surrounds and overwhelms our lives and who we are. Cancer owns us, at least at first. I remember after a few months in the cancer battle wanting to run away, to take a vacation from cancer. But everywhere I went, my body went...my body with cancer growing in it. There was no escaping cancer, cancer went with me everywhere. I couldn't hide. I couldn't leave the cancer behind, it was a part of me.

My best coping mechanism and greatest form of expression before cancer had been music. I started taking piano lessons for the first time when I was about 30 years old, it was something I had wanted to do since I was 5 years old. Once I learned to improvise popular music, I loved to play. If I played for a few hours at a time without interruption, I was transported to another place, my "zone" that wasn't part of this world.

My other great spiritual escape is nature. The beauty, perfection, symbiosis and simplicity I find when I am alone in the woods also takes me to a healing "zone" away from my normal world.

At some point after our spirit recovers from the shock, and we need to indulge ourselves in our best coping mechanisms, the ones that sooth us to our core. Music and nature were and are my best coping mechanisms. I'm sure others have different ones.

Before cancer I didn't view those things as essential to my well being, now I do. I need the peace they give me as much as I need air and food. These things heal my spirit, and I think that helps keep my body whole. I play piano publicly usually several times a week now, and since cancer I've taken up backpacking and have hiked short trips in the wilderness in four states in the past year.

Make the time!

Monday, October 8, 2007

Emotional Survival

After my diagnosis, surgery and completion of chemo, I went away with my husband and kids to a lodge we frequented for a weekend every winter. At the time I was living between CT scans. My life expectancy still seemed up in the air. The cancer might recur and require more treatment, or it might return and not be treatable. The cancer might even be still for awhile....only to explode later. I never knew. Any pending CT scan result was a potential terminal diagnosis.

I found a book in the library of the lodge that intrigued me. The title was "Saved", it was written by William Hoffer. It documented the rescue of those who were on the fateful voyage of the Andrea Dori, an Italian passenger ship carrying 1706 that sank after being struck by another ship in a dense fog in 1956.

Many died. Many were saved.

What most intrigued me though, was the epilogue. Many who were saved suffered an emotional aftermath that lasted a lifetime. They'd faced death and survived, but their lives were forever changed. One woman experienced severe depression on the anniversary of the collision every year and at age 51 suffered a fatal stroke on the very day the accident had occurred, the very day she had been "Saved".

This week I've received several emails from appendix cancer patients who were "saved" by extensive surgery and chemotherapy, but who are struggling emotionally. And I so understand their feelings and struggles, their struggles were, and are even now sometimes, my own. Unlike the survivors of the Andrea Dori, some of whom chose never again to go near the water, we can't walk away and forever leave the scene of the trauma. Our feelings of vulnerability linger. We revisit the scene of the trauma with every CT scan, with every tumor marker test, with every visit to our oncologist. In a sense, it is never over for us, we always feel vulnerable.

A survivor recently told me her diagnosis and surgery felt like an earthquake combined with hurricane Katrina emotionally. She wonders if peace of mind will always be elusive. Will she ever feel safe again? Will her life ever be "normal" again?

Many I communicate with are treated with antidepressants or see therapists and counselors. I applaud them. They recognize they are struggling emotionally and seek help. They are not too proud to say they need help with the emotional trauma we all experience.

We understand the post traumatic stress and issues soldiers experience when faced daily with death and loss. We accept and encourage them to seek treatment for their emotional turmoil. We need to seek and accept help for ourselves and to address our own emotional health needs.....we have long been in battle and fighting a war of our own.

Our emotional recovery is just as important and significant as our physical recovery.