Friday, October 18, 2013

GUEST BLOG: Janet Freeman on Gratitude and Stewardship

I was awed and inspired by how fully my friend lived the almost-five years between her diagnosis with Stage 4 ovarian cancer and her death last week. I am reminded that a terminal diagnosis does not mean we stop living -- it is an invitation to make every moment count, and thereby enrich not only the life of the patient but those around her. Here is author and lung cancer patient Janet Freeman-Daily on her own experience of hope, illness, and the zest of being alive.

I’m grateful to be here.  Actually, I’m grateful to be anywhere.  I’m grateful to be alive.  The fact that I’m alive is a modern-day medical miracle.

In May of 2011, after a few months of a persistent cough, I was diagnosed with pneumonia caused by advanced lung cancer.  No, I never smoked anything except a salmon.  Five months after diagnosis, despite chemo and radiation, the cancer spread outside my chest and I was given at most two years to live.  A year later, after more treatment and another recurrence, I learned my cancer had a rare mutation.  Last October, I found a clinical trial that could treat that mutation with an experimental pill, and I flew to Denver to get it.  In January, I achieved the dream of all metastatic cancer patients: No Evidence of Disease.  My cancer is no longer detectable.

I am overwhelmingly grateful for everything and everyone that has brought me to this state of grace: medical science that discovered new ways to treat my condition, insurance that paid for most of my care, family and friends who supported me, a knowledgeable online lung cancer community, and all the prayers and good wishes lifting me up throughout my cancer journey.  Thank you.  I am truly blessed.

I am not cured.
The trial drug only suppresses my cancer, and I have some permanent side effects.  I’ll be in treatment for the rest of my days.  Clinical trials will hopefully keep me feeling comfortable and capable for many months – even years. I am satisfied with living however long I might have.

Being given a second chance at life tends to give one a different perspective.  Colors are brighter.  A warm breeze rustling the trees makes the whole day worthwhile. Time spent with family and friends becomes precious.

A second chance at life also makes one introspective.  Why was I spared when others died?  Why does my mutation have an effective treatment when others don’t?  Why am I able to see one of the best lung cancer doctors in the world when many patients can’t afford proper treatment?

Why am I still here? What purpose does the universe have for me?

Part of the answer to why I’m still here is, I am blessed with gifts that help me survive my cancer journey.  I’m able to understand the medical science and my treatment.  I’m able to explain what I’ve learned.  And I’m able to advocate for myself with healthcare providers.

Yet I am just a steward of these gifts that were bestowed on me. Understanding my gifts has led me to a new purpose: I am here to help other lung cancer patients. I strongly feel this is my calling in the time I have left.

Lung cancer has a stigma attached to it.  Few people know that 80% of those newly diagnosed with lung cancer are nonsmokers or never smokers.  There is more to lung cancer than just smoking.  Yet we are the lepers of the cancer community.

For this reason, some are ashamed to admit they have lung cancer.  Most don’t know about the new treatments like the one I’m taking–even some doctors don’t know. Patients don’t know where to turn for answers.

Lung cancer patients need more than compassion. They need information.  They need HOPE.

After considerable thought, I decided the best way to use my gifts was to go public about my lung cancer. At first, I only shared my story online with friends and lung cancer communities.  Eventually I started blogging (which is essentially a journal open to the world on the Internet) and began speaking publicly about my cancer.

Going public with my lung cancer experience has already had an impact. As I’d hoped, it shows patients that people can live with metastatic lung cancer, and encourages them to ask questions about their treatment.

But going public has also brought completely unexpected benefits. It helps families understand what their loved ones who have lung cancer are experiencing. It gives hospital chaplains insight into their patients’ needs and feelings. It demonstrates to doctors that patients can be partners in their own care. It reveals to researchers how their work makes a difference in the lives of real patients.

In addition, I’ve realized a personal health benefit in sharing the gifts I was given to steward. Having a purpose gets me through the tougher parts of cancer treatment.  It won’t heal my cancer, but it does help me live a healthier, happier life.

And it all started with being grateful that I’m alive.


About herself, Janet says: "I’ve made a career as a “technical translator” of
sorts: I research a scientific or engineering subject, describe it to others in less technical terms, and help them understand how this new gizmo could benefit them. I applied my engineering degrees (MIT SBME 1978, Caltech Aeronautics MS 1984 and Engineer 1986) to a career in aerospace systems engineering for two decades, interacting with customers, developing new products and writing proposals. I spent over 12 years caring for elderly family members who had dementia. My adult son, who I adopted when he was three, is on the autism spectrum. I now write science articles and science fiction, sometimes under the pen name “Janet Freeman,” and speak on science panels at science fiction conventions, where I’m told I “give good science.”

Her blog is here.

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