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, March 22, 2010

Living With Uncertainty

I had an interesting discussion with my husband tonight. A co-worker our age that we both liked and respected passed away a few days ago. When I heard he had a terminal diagnosis, I right away assumed he had cancer. He didn't. He had something similar to mad cow disease, but an inherited prion disease. Prions are small bits of protein that are indestructible by heat or disinfection but when abnormal, destroy the brain, the nervous system. His grandfather had died of the same disease, he inherited it. There was nothing he could have done to prevent it, no medical treatments available. A healthy lifestyle would have made no difference. The disease is always fatal.

We talked about those who may have inherited fatal genetic diseases, like his, or like Huntington’s. If you could, would you want to do the genetic testing to find out if you carried the disease and would die of it before you ever hit old age? Would you want to know you would die young?

My husband thought knowing would have could get your affairs in order and live every day to its fullest knowing your time was limited.

I remember thinking I'd felt the same way...before my own cancer diagnosis. I used to think I'd want advanced warning before I died. To get my affairs in order, to plan my own funeral. To live every day like it might be my last. Maybe I wanted that sense of control...after all, I am a control freak.

But living with a cancer diagnosis changed all of that for me. Trying to live your life without planning for a future is very difficult. For several years I only planned my future between CT scans. Healthy people take for granted living with a future in mind...but don't realize it. Healthy people live thinking of future vacations, promotions, grandchildren, career goals, dreams, retirement. We are, as a society, very future oriented, I came to realize. When you can no longer assume a future, it's very hard. You feel very lost.

And the living one-day-at-a-time that is so glamorized (but not in the cancer community) is also difficult. I tried it for awhile after I was diagnosed. Since I had to make the most of every day, I felt guilty watching TV, sleeping in, relaxing. I was afraid to reprimand my kids even if it was justified (what if that was the last thing I ever said to them?). When I tried it I felt everything I did had to be profound and meaningful. Making the most of every day is hard work; it's not a normal way of living. It's a lot more than just "smelling the roses".

Since a cancer diagnosis and dealing personally with my own probable demise, I have changed my point of view. I hope in the end I die suddenly; a plane crash (I have NO fear of flying now), or a heart attack or car accident. Something sudden and quick and unanticipated. I don't want to live my life in the shadow of anticipated death. I know we all will die one day, but I want to live the rest of my life not thinking about it. I want the naivety I had BC (before cancer). The assumption I had that I would live until I was old and my body was worn out and used, that I would live past the time I had achieved all of my goals.

I think the one plus of a cancer diagnosis is that it makes us grow spiritually. While I don't ever see cancer as a "gift" it does make us grow and develop our character in ways we wouldn't have otherwise.

My big hope is that our friend and co-worker who recently died was brain damaged enough not to be aware he was dying. Maybe he never had to try to live one day at a time...and I hope he never got his affairs in order before he passed. I hope that he was not aware of the fact that he was dying and leaving his wife and four kids. I hope he was oblivious to his transition and never contemplated his own death.

The living with terminal uncertainty on every level is the hardest part.


buffet1193bc said...

Hi Carolyn,

It's a pleasure to write to you again. I just turned 49 on March 7th.

I have to deal with another test next week-a colonoscopy. The VA in Portland OR is covering the cost of the treatment. They sent me detailed instructions and some stuff to take. I had a recent urology exam (I'll spare you the details) to see if I had gall bladder cancer. The test was negative. So was the result of a CT scan on my stomach.

I have to see my oncologist in May.

I have bipolar disorder and am depressed most of the time. I'm taking my meds (zyprexa, depakote and prozac). It's hard to keep my mood up with all this cancer stuff.

Take care and thanks for posting,

DG said...


Found your blog this morning while bouncing around on the net.

I was diagnosed with Stage IV adenocarcinoma of the appendix in Feb of 2001. I had a right hemicolectomy at the time of diagnosis (thought I was just going to have an appendectomy)--a fun little surprise, right?

Then I went to DC for surgery by Paul Sugarbaker. I'm still here, but I can relate to your words about always having cancer on the back of your mind. It does really suck.

Anyway thanks for taking the time to write/maintain this blog.

Best of health!

Daria said...

It's a tough tough journey ... this living with cancer.

Carolyn Langlie-Lesnik RN BSN said...

Hi Daria,

You are so right, living with uncertainty is very hard...I don't know if those who have never had cancer understand what that is like, I don't think so. It is a tough journey in very many ways.

Take care!

julieakeen said...


My name is Julie. I was diagnosed with pmp in 2002 after a hysterectomy for suspected ovarian cancer. In Jan 2003 I had the MOAS and made a very good recovery. In May 2009 my CT scan showed up something very small which they would check again in 2010. My scan in May showed that it had marginal growth and they said they could leave me for another year and then scan again. You can imagine my turmoil!

I came across your blog and could not believe your piece "Living withg Uncertainty". I read it and felt you had transcribed my thoughts over the years. I have felt for eight years exactly the same as you have described.

I will be following your blog with great interest!

Thank you it is very comforting.


Carolyn Langlie-Lesnik RN BSN said...

Thank you, Julia. Living with the uncertainty we all share is very difficult, and it stays with us for a long time. I truly wish you the best, and I understand how you feel!