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, March 19, 2009

End Times

I was going to do a single post here on "end times", but I have so much to say I think I will make it a series of posts.

A few years after I had survived my cancer without recurrence, a cancer that I was initially told was untreatable and that most statistics indicated was not survivable, I decided to take on the noble cause of helping others survive my same cancer. I wanted to help everyone beat the odds, help them to stay alive, help them become cancer SURVIVORS. I thought that with enough information and aggressive enough treatment everyone could be like me, alive and cancer free following our devastating diagnosis.

After awhile, though, I had to accept that many I communicated with would not survive our cancer. Sometimes their disease was too extensive for treatment, sometimes it didn't respond to the best of treatments, sometimes it recurred aggressively after treatment and there were no treatment options left.

On a personal level, I'd had to deal with my own mortality up close and personal after I was diagnosed. I think those of us who have had a cancer diagnosis never again feel invulnerable. We are forever acutely aware of our mortality. We learn of people succumbing to cancer recurrences after five years cancer free. In my case, I've even learned of a recurrence of my cancer in an 8 year survivor. We never feel safe again. We can't go back to our old before-cancer selves, who lived in denial of death, who assumed that someday when our life work was finished and our bodies were old and used and a burden to others we'd just die in our rocking chair, or in our sleep of old age.

After cancer we can no longer can just intellectualize that we will one day die, our pending death becomes a daily emotional reality. We have trouble contemplating a future, making long term plans. We know, we really know, how fragile our reality is.

As an advocate, I couldn't abandon the people who would not survive and only help those seeking treatment...the cold hard fact was that if I was going to be a cancer advocate, I had to be available to help those who also were succumbing to their disease, who were dying. Every story didn't have a happy ending. Sometimes even those who fought hard and had positive attitudes and who lived a healthy lifestyle in every way died. Some who were treated with the latest and best and most aggressive therapies would not survive. Even those who were young with small children at home and who had every right to survive lost their battles. I needed to get comfortable with death if I was going to spend time in the cancer community. Death is a profound and common reality in the cancer world.

For 6 months I volunteered at a local hospice. I did respite care and spent time talking with people who were dying. Listening to their fears, reading them books, feeding them when they couldn't feed themselves, talking to their family members. That experience helped me a lot, it helped me to accept that death is a natural transition in all of our lives, that the transition can be done well, that it can be painless and peaceful. That in many cases death is liberating.

I had to also come to terms with my own feelings about death. I read lots of books about death and dying. A few by Elizabeth Kubler-Ross. I read The Denial of Death. I read books like Final Gifts written by hospice nurses. I read books by medical professionals and clergy who had spent much time with the dying. I read books about heaven written from a religious perspective. I read books about near death experiences. I recently ordered Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life . I immersed myself in literature about death and dying. I had to, cancer kills over 500,000 people a year in the US, and I was communicating with many of those who would become part of that dismal statistic. I needed to learn to accept and deal with death as a reality equal to survivorship.

We all like to read the books and hear the stories of cancer survivors...but many don't survive. We need to acknowledge that and be there for those who will lose their lives to cancer. They need advocates too.


Psiplex said...

Sending you love, light and hugs for your bravery and honesty. Currently Stage IV SCC head and neck dealing with all the joys of chemo and the mess that coms with it- I hear you! Just wanted to say to folks who know of someone diagnosed with cancer, Don't Be a Stranger!

When a person is diagnosed with cancer, it puts in motion a series of events that can have wide ranging consequences for personal and professional relationships. In many cases, people who are diagnosed with cancer and begin treatment face interruptions in their normal routines that span from mild to severe.

Depending on the stage of cancer diagnosed, further testing and treatment may need to begin immediately often leading to schedules that are blown off course. In a life-changing event such as this, it is easy to lose the day to day camaraderie of colleagues, friends and fellow workers. When a patient is away from their routine for some time, an awkwardness can creep in based on the right way to approach the patient's cancer battle.

This awkwardness stems from the fact that folks in a standardized routine, say, going to work or school each day, really don't want to be reminded that illness and loss of routine can happen to them. They tend to not know what to say to those who are battling cancer and thus a gulf exists in communication. One party doesn't want to be reminded of how anyone is susceptible to cancer and the survivors don't want to be left out of everyday life and cut off from communication. Former co-workers, colleagues, family and friends just 'don't know what to say' to cancer patients.

It's really simple. Acknowledge that the person battling cancer is doing so and just be yourself! The cancer patient will welcome hearing from all those who shared their world and who are genuinely interested in their recovery and future. Don't be a stranger!

You will not offend anyone by honestly connecting to them and sending along your greetings. Just use common sense, be tactful and let the sunshine in – it will make a lot of difference, guaranteed!

One Love

Carolyn Langlie-Lesnik RN BSN said...

Thank you so much, Psiplex, for your support and for your very wise words. Stay in touch, I wish you the best.


RB in Texas said...

Thank you for this post. I am currently in remission from OvCa and am so annoyed no one wants to talk about it. I'll never be normal again and I think about reality all the time. I take a step, I breath in the air, I look around at my surroundings and try to imprint it on my brain. I'm trying to experience every minute because I know my reality could quickly change.

Wendy S. Harpham, MD said...


I've been following your blog for months (until my computer crashed a few weeks ago).

I appreciate this post of yours. When I wrote my first children's book for kids whose parent has cancer (entitled Becky and the Worry Cup), people told me I shouldn't include anything about death. I felt I had to, so I included a section where Becky asks Mom if she can die of her cancer.

Awareness of our mortality makes us human. I wrote in a poem, "The intimate knowledge of what might have been lost, and might yet be, makes me feel today -- everyday -- in a wonderfully intense way....Even unpleasant times are less painful, for they are proof that I am still here."

I'm reading Brody's book now, too. As I read a chapter, I blog about it. Looking forward to reading your future blog posts.

With hope, Wendy

Carolyn Langlie-Lesnik RN BSN said...

Thank you, Wendy. I am an admirer of yours and have purchased a few of your books. I truly appreciate your support....and your wisdom.

I wish you the best always. Carolyn

Vicki said...

Thank you so much for this post. My mother died after an 11 week battle with Appendix Cancer on January 15, 2005. It was horrific and it took several years to emerge from the deep grief. Some of that grief was normal due to loosing a parent I was so close to, some of it was not because of how much is unknown about this disease. It is amazing how shameful it can feel to tell people she died from a disease of a virtually disposable part of the body. It's as if it was her fault she had the cancer because she hadn't had her appendix removed before it caused a problem. It makes no sense, but it has been painful. (blogging has helped :) ) I have had doctors tell me that my mother's diagnosis must have been wrong because "cancer doesn't start in the appendix." Families need to know that there is no shame in dying of this disease. And, they also need to know about how to detect it, any screenings available, etc. I still have an appendix and it feels like I live with a ticking time bomb inside of me every day. Thank you for this post!