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.

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.


Becky said...

Hi. I was recently diagnosed with adenocarcinoma of the appendix. I have just started to research and located your blog. Thanks for doing it. Already it has made me feel a little better. I think I will be referring to it frequently--I really need the support of someone who knows something of this disease. Being in limbo--that waiting place between earth and hell--is right where I am. I am not sure whether to hope the limbo part is short or very long. Long, I guess. Just like when I thought as soon as I was diagnosed, "Oh no. Now I will have to call myself a cancer survivor. Wait! That would be a fantastic thing! I hope that I can call myself by that title." Thanks for putting info out there for those of us who have been knocked assunder and are trying to get up and go on with a plan, tentative though it may be. Becky

Becky said...

I was recently diagnosed with adneocarcinoma of the appendix. I have just started looking online and appreciate your blog with your articulation and information. I, too, am in limbo--isn't that supposed to be the place between earth and hell where you wait to learn your fate? Please keep writing. I think you may offer me great hope and help. I really need to learn more about any possibilities with this disease. I am, by the way, also a health care worker--an ophthalmologist--but that doesn't make it any easier (perhaps harder) to face this. Thanks.

Carolyn Langlie-Lesnik RN BSN said...

Hi Becky,

Thank you for your kind words, I'm so glad my blog is helpful to you. Have you seen my web site, I have compiled a lot of information about the disease there based on my own research. My blog is actually an outgrowth of my web site. I have also communicated with an oncologist and a trauma surgeon diagnosed with appendix cancer, and you are right, it's almost more difficult to know too much sometimes. Being a health care professional with this diagnosis has some intellectual benefits, but I think makes it even more difficult emotionally.

I wish you well, please take very good care,


Cynthia said...

Hi, I have mucinous adenocarcinoma of the appendix, and have been through chemo, and surgery. It's nice to hear of someone else who can't really celebrate remission... Everyone around me, and even other cancer survivors, are happy I'm now cancer-free, but how can I be happy to now have a 40% chance of survival?? Like you said, it might come back at any time, and either warrant another surgery, or not be curable? In any case, my chances of seeing my youngest turn 8 are slim. Kudos for still being here after 8 years, I cannot imagine living this 'Hell on earth' for another 8 years. Sorry to post such a downer post, I just wanted to thank you for being there, and showing me that I'm not alone... Cynthia

Carolyn Langlie-Lesnik RN BSN said...

Hi Cynthia,

Your post was not a "downer" post, it was an honest in "cancer limbo" can be very difficult, but hang in there!