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.

Sunday, February 4, 2007

Control

Being a cancer patient and assuming that identity impacts your thinking in all ways. I'd always been somewhat of a control freak, and I suddenly realized my sense of being control was and always had been an illusion. All of my assumptions about my future had been based on the fact that I would indeed have a future. It seemed that had been a false assumption. My future was not something I controlled, as it turned out.

Immediately on assuming the cancer patient role, I gave control of my life to the cancer. My thoughts and activities were suddenly dictated by the disease. Cancer dictated that I would be in a doctor's office almost every week, cancer dictated that 4 hours of one day a week would be devoted to chemotherapy, cancer dictated that I would be at a hospital pre-registering for lab work (after the wait at preregistration) and having labs drawn (after the wait in the lab) almost weekly. Cancer made the rules, cancer made my schedule, cancer determined my options, cancer determined our budget and my choices, cancer often controlled my thoughts.

I started living one day at a time. I no longer put my faith in tomorrow or next week or next year. They say that is the way we should all live, but in reality,it is a difficult way to live. We live in a very future-oriented culture. I no longer had the ability to make an appoint for dental cleaning 6 months down the road. I could no longer comprehend planning for a future. I couldn't contemplate my kid's graduations, continuing my own education, furthering my career or planning for my retirement. I lived one day at a time, that was all I felt I could control.

4 comments:

Nancy said...

Thank you so much for this website. I also have signet cell cancer of the appendix - seems we are a very select group. Trouble is, the original site had been thought to be the colon (despite totally clean colonoscopies), and only recently has been confirmd to be the appendix. Long story. As a result, your operation was never done, although I am now recuperating from a bowel bypass - the very first symptom at all of this cancer, almost a year afer it was found secondarily on the ovaries. I will be bringing in the research from you site to my next appt - it has been very helpful, although shocking. I completely understand about the control - that has been something very difficul to come to terms with. Another thing - what will I now do with the rest of my short life? How can I stay at work, devote the time I want with my children (who,unlike yours, are grown - 22, 26, 30, 32), yet make the rest of my time realy matter?

Carolyn Langlie-Lesnik RN BSN said...

Hi Nancy,

I'm so glad my site has been helpful to you. I've heard from many appendix cancer patients, and it is very common for us to be misdiagnosed initially. It's also very common for the specialists to see appendiceal cancer patients only after they have already had at least one major surgery related to their disease.

The loss of control is very difficult, though it makes us realize how much our feelings of control were illusions in the first place, I think. And your "What should I do with the rest of my short life?" is another thought that seems to be common to all of us. I still think that, I am obsessed with living a purposeful life. Our priorities totally change!

Thank you for your comment, and I wish you well. Please feel free to keep in touch.

Take very good care,

Carolyn

Lynne said...

Carolyn - I do not have cancer of the appendix, although I know of two people who do, so I had known that it's a rare cancer. I also have a rare cancer, gallbladder cancer, and I found your website through Sean's Sharing our Days site. I like how he links blogs to different illnesses, and expands our network of connection.

I do face the questions about control and having a terminal diagnosis, and how to live my life that's left. I am 8 months post diagnosis, had a period of being asymptomatic, and now have a recurence in my abdomen where my gallbladder was. As a result, I've started chemo, and entered the world of worrying about side effects. These questions are so big, and living life one day at a time really is a hard thing. I, too, have a blog, and I'm always hoping that other folks who have my rare cancer will find it. My site is Life Changing Cancer at www.dahlborg.blogspot.com

I appreciate what you are doing in telling your story and providing resources and links for others with your diagnosis

Carolyn Langlie-Lesnik RN BSN said...

Hi Lynne,

I looked at your site "Life Changing Cancer" and also Sean's "Sharing Our Days" blog, both are wonderful sites. I admire you for sharing your journey. I'd heard it once said, and it's true; rare cancers are lonely cancers, you can't commiserate with others with the same disease, though now I do via my web site. At the moment I know lots of people with appendix cancer and no one with breast cancer thanks to the internet community. Have you "met" others with your disease via your blog?

I hope you tolerate chemo well, I did remarkably well with mine, it really didn't alter my life much. They've gotten much better at pre-medicating to prevent or control side effects. I wish you well, and thanks again for your comment.