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, December 28, 2009

Clarification

I probably need to clarify some of my thoughts related to my last post. I really don't believe cancer is "mind over matter". I don't think positive thoughts and doing everything right promises a cancer cure or good outcomes...I am all too aware of those who have a positive and strong "I'm going to beat this" attitude, who don't beat cancer. I know of people who have been healthy eaters, athletes, who do yoga, who have faith and who have been diagnosed with and who succumb to cancer. I know of many who pursue very healthy lifestyles after a cancer diagnosis, to no avail. Cancer is sometimes bigger than all of our resources.

I also know that based on new research that there are some who have a genetic predisposition to violent reactions to chemo. Going into chemo treatment with a positive attitude won't over-ride their predisposition to have violent reactions to the drugs. And many suffer surgical complications they have no control over. Many have more extensive surgeries than I did, so have a more prolonged recovery than mine.

I guess I was just thinking of patients I have seen over the years as a nurse, with and without cancer, who decide ahead of time that therapy will be difficult, recovery prolonged, who anticipate negative reactions to every new drug they are given, to every new treatment. And their beliefs are often realized. I see many who assume prior to surgery that they will feel badly for a long time after, and they do. And some who assume they will have a prolonged recovery from surgery do so in part because they assume an invalid mentality post-op. They assume they need to stay in bed feeling badly, and the staying in bed promotes a prolonged recovery as they heal more slowly when they decide to not move. And there are some who experience "anticipatory" nausea and vomiting prior to chemo....they actually feel nauseated and vomit prior to chemo treatments, as they have convinced themselves it is inevitable.

I had chemo every Tuesday, and had chemo with the same group of patients week after week. No one in my group had negative responses to chemo. Many went out to eat or went out shopping after chemo treatments. We laughed and talked and had fun during our hours of chemo. Those who had difficulties with chemo were in the minority.

I've seen many patients over the years who have done well after major surgery, because they were proactive and decided to do everything they could to recover rapidly. I've also seen many who recovered slowly and who had many complications related to the fact that they assumed they were supposed to feel badly and so acted accordingly.

One of the biggest things cancer takes from us is our sense of control. And we cannot control that we were diagnosed with cancer, we cannot control our final outcome of the diagnosis. But we can have some control, even still.

I feel expectations, at least in regards to therapy often do often influence outcomes (though a good attitude doesn't guarantee a good outcome). We have a chance to be in control, at least in some ways, of how we respond to therapy. We can be victims, or we can work to assume the best outcomes. We can decide not to assume bad reactions to chemo, but to go into it open-minded. We can decide pre-op that we will walk and move and do everything we can to enhance our recovery, even if it is painful. Part, but not all of it, is a mindset. A sense of determination, a willingness to fight that can only help us. It may not guarantee good outcomes, but it surely can't hurt.

10 comments:

Juliana said...

Love your blog. Please see mine tomorrow I am going to post a repost from another bloggers whose boyfriend has stage IV cancer.

I am new to your blog, please pop on by and check out my blog and follow if you would like. It is very nice to "meet" you!

Kim said...

Just had appendix cancer surgery, looking to talk with someone who has gone through the same or similar.

Carolyn Langlie-Lesnik RN BSN said...

Hi Kim,

I don't know if you use on-line forums, but there are two for patients with appendix cancer that I know of, the PMP Bellybuton Club and The Rare Cancer Alliance's Appendix Cancer Forum. There is one more forum I can't remember the name of that's out of the UK, I believe affiliated with a hospital there that offers HIPEC.

Hope that helps!
Carolyn

Anonymous said...

You might appreciate "The Anatomy of Hope". He speaks about the difference of hope and "positive thinking". Excellent book by Jerome Groopman, MD
Thanks for sharing your journey.

Carolyn Langlie-Lesnik RN BSN said...

I actually read Anayomy of Hope early on in my cancer journey, it was a great book. I believe I still own that book and another written by Jerome Groopman. I do remember his discussing the difference between hope and positive thinking...I need to read that book again!

Thanks!
Carolyn

Tori said...

Carolyn

Thanks for your courage to share your story. I enjoy your blog posts and the resources you so graciously provide.

All the best to you and your family.

Tori

Carolyn Langlie-Lesnik RN BSN said...

Thank you so much, Tori, for your very kind words. I wish you and your family the best too. I hope you have a great 2010!!

Take care,
Carolyn

Anonymous said...

Hi Carolyn,
I have decided to comment on your blog of this date as it is the date of the colonoscopy that changed me. Then received the dreaded report on Jan. 9, followed by Jan 26 hemicoloectomy. An appendix full up with GCC (2 lymph nodes contamination), a rarity of a rarity. Well we all have an "orphan disease" here. No use feeling sorry, and of course one of the best things that could happen to me attitude-wise. Tumor markers look hopeful, but uninsured, oops. I can sincerely say better me than someone else.Good luck to all of you.
Almost a 3 mo. survivor

Anonymous said...

C,
I apologize for that "rarity of a rarity"
stuff. Your thing is much rarer.

Carolyn Langlie-Lesnik RN BSN said...

No need to apologize! GCC and signet ring are both very rare!

I truly wish you the best,
Carolyn