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.

Saturday, March 29, 2008

Seventh Anniversary of My Cancer Diagnosis

Today is the seven year anniversary of my cancer diagnosis. I am blessed to still be cancer free after being told initially I was beyond treatment with a very poor prognosis. It's been a long and tough road, but my life is immensely richer than it was before cancer.

So much has happened in the past seven years related to my cancer experience and my being in the cancer community. After about 4-5 years of survival it became very important for me to find purpose in my survival and to give back. Since then these things have happened:

• I created and published my web site Appendix Cancer (Appendiceal Carcinoma) and Peritoneal Surface Malignancy and it has had 50,000 hits. I also published my blog and via my blog and website, I have communicated with over 350 patients newly diagnosed with appendiceal cancer.

• I've been in touch with over a dozen surgical oncologists who specialize in treating those of us with appendix cancer and they have all been gracious enough to support my advocacy efforts.

• My daughter's senior class published a book about 33 people they identified as local heroes. One of the chapters was about my cancer experience and my cancer advocacy efforts. My kids have also used our family's experience as the subject for speeches and papers and projects. My eldest daughter's senior Personal Impact Project was creating over 1000 appendix cancer ribbons that she's distributed to promote appendix cancer awareness. My cancer experience overall has made us closer as a family. We view life differently.

• I was recently honored by a magazine editor who read my blog and asked me to be the subject of one of their magazine's cancer blogger columns. My blog is featured in the spring issue of CR Magazine. You can click this link to read the article: Cancerblog: Cancer at any age is unfair By Alanna Kennedy

• I was invited to attend the annual meeting of the American Association for Cancer Research for 5 days in San Diego this April. There I will participate in the Survivor<->Scientist Program. I'm sure I will meet many inspiring advocates in addition to research scientists involved in the search for cancer cures. I know I will learn much that I will share here when I get back.

• I was asked by someone who read my web site and blog if I would be a contributor to a new on-line medical encyclopedia. I've written an entry about appendix cancer for the encyclopedia.

• I have founded and am in the process of developing a non-profit organization to support those of us diagnosed with advanced abdominal cancers, including appendiceal cancer, who need extensive medical treatment including cytoreduction surgery, peritoneal and/or IV chemotherapy (more about that later).

On a personal level, the time has had many other landmarks including:

• My husband and I celebrated our 20th wedding anniversary

• My kids both completed grade school and junior high school. My eldest will graduate from high school this year and begin college next year. Next year my youngest daughter will graduate from high school. It's what I prayed so hard for, to live to see my kids graduate from high school. If that's all the time I get I'll be grateful and satisfied with the length of my life here.

• I joined a Toastmaster's Club that I love and that has introduced me to several new friends. I've given 7 speeches there. I also volunteered at a soup kitchen for 2years that served hundreds of people and I made several new friends there also.

• I began playing piano professionally

• I've taken up backpacking and have been on 5 backpacking trips, including one on the Appalachian Trail, a place I'd always dreamed of going.

• I finished my first ever bicycle century, the Apple Cider Century; 100 miles in one day. It was something I'd always wanted to do.

• I celebrated 7 more Christmases, Thanksgivings and Easters and all of our family birthdays with my husband and kids. I got 7 more springtimes.

• My youngest daughter and I did a Mother-Daughter weekend in Chicago, complete with a spa day, and my eldest daughter and I were able to see John Williams conduct the Chicago Symphony Orchestra and to see Wicked performed in Chicago.

• I finally made peace with my God and for the first time in my life became the member of a church.

Life has been rich and good. I do still live pretty much one day at a time. I don't take time on this earth for granted, but now I also just see my time here as a small piece of my whole life, so I'm not as heavily invested here. And I invest more in my relationships with my husband and kids. I prioritize my time differently.

It hasn't been an easy 7 years, it's been long and hard. Surviving cancer isn't easy, it's difficult. Life has never again been as easy as it was before cancer. There have been many struggles after the initial physical battle was over...struggles mentally, emotionally and spiritually. But I am better for the battle, I think. I've tried hard to make my short life here count for more.

I truly hope I've made a difference....that I've honored the gift of my survival. That I've honored the gift of being able to see my kids grow up.


Graham Davies said...

cbqtkWell done, Carolyn! What a string of impressive achievements! Long may they continue!

I celebrated two years of remission on 1 March 2008. I guess I have some catching up to do compared to you. I keep updating my story here:

I was diagnosed with urachal cancer, falling into the same broad group as appendix cancer's group. I think it may be even rarer, however. I have not managed to track down more than half a dozen fellow-sufferers and they are all in a worse situation than I am.

My wife and I will be 40 years married in August this year. Two years ago we never thought we would make it.

Carolyn Langlie-Lesnik RN BSN said...

Hi Graham,

Good to hear from you! Actually, you are only a two year survivor and have already inspired people with your site and the support I know you've given others in forums along with the positive comments you've posted on my site. I didn't do anything like that until I hit 4-5 years, so actually, you are way ahead of me! You have actually been very inspirational to me!

Take care,

TerryTina said...

Hello, Your story is remarkable. I keep praying for you and my mom. My mother is diagnosed with serous adenocarcinoma (peritoneal and small intestine). She is in stage IV. She is in the hospital and on morphine. Because her pain is so great and she cannot walk more than 10 feet, the doc is reluntant to do chemo until 5-7 more days?

In the meantime her fluid is building up (3 ltrs). The fluid is suffocating her lungs. They'll drain on Sunday. She has not eaten in 12 days and has viatamins through her IVs. She is scared, I am scared. What can I expect in the next 4 weeks.

Carolyn Langlie-Lesnik RN BSN said...

Hi Terrytina,

If you'd like to write me so we can talk more, email me at Thank you for your prayers, and know your mother will be in mine. I know how scary it can be.

Take care,

Dr. Swill said...

Congrats on still being cancer free. April is my one year anniversary of being free from tongue cancer.

I too blog about my cancer and Hope I make it as you have!

I enjoyed reading your blog and understanding your strength. I wish you continued health!!

Brian Walin

Carolyn Langlie-Lesnik RN BSN said...

Hi Dr. Swill,

I read your blog, love how you came about your name! I'll bookmark your blog, I really like it.

I hope you are able to reclaim your voice, time heals many things. I'm an Idol fan too, right now I'm totally lovin' David Cook....he seems to have musical genius too!

I wish you freedom from cancer also, I know how hard the watchful waiting is.


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