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, July 2, 2012

Why Me?

Funny....I never felt "why me" in regards to my cancer diagnosis. I had smoked for many years, ate fast food, didn't exercise sometimes.  I had young children I needed to raise, but I was a nurse, I knew that never stopped cancer.  And I've communicated with cancer patients who never smoked, never drank, who worked out every day and ate an organic vegetarian diet, and who asked "why me".  But I didn't.  Being a nurse in my situation had it's ups and downs.  In a sense I knew too much when I was diagnosed.  I could read the medical research (which didn't offer much hope). But I also knew how to look into clinical trials, to say no to my local oncologist and surgeon who wanted to treat me; I knew I needed a specialist, I knew I needed to see someone familiar with my disease.

I've been advocating for appendix cancer patients now for several years, and I see so many unfair cases.  The single mom with a handicapped child who lost her battle.  A woman who became a good friend and saw a specialist and had HIPEC who lost her battle; her kids were 4 and 6 years old.  Another mom lost her battle, she had 4 children, one only 18 months old.  I've talked to moms who only wanted to live long enough that their children would remember them when they were gone...and who didn't make it.

So my "why me", is why was I chosen to survive?  I just hope I make a difference with my survival, and help others be where I am today.

14 comments:

Michelle Clough said...

I think you were chosen to survive because of all you have done to help others who are fighting this crappy form of cancer. Many people get diagnosed and do all they know, and just fight the fight. Here you have fought and taught, fought and taught and continue to fight and teach the whole way through. My mom was diagnosed with your exact type 6 months ago, stage 4 signet Ring. I clung to your posts like gum on a shoe. I read every word, over and over and over. Just to know there are others out there who are surviving, helps. That is why you were chosen. Look at all the people you have helped. I extend to you a HUGE, HUGE - THANK YOU.

Carolyn Langlie-Lesnik RN BSN said...

Michelle,

Thank you so,so much. You made me cry. Truly. I so hope I have made a difference with my survival. I HAVE to. I need my survival to have purpose. I've been given so many gifts I need to pay back...like seeing my kids at 10 and 11 when I was diagnosed to now seeing them as adults. I am so blessed and grateful. I have so much I need to give back.

I so wish your mom the very best. Contact me anytime you need to! My email now is clanglielesnik@gmail.com.

Again, thank you so, so much. I so wish your mom the best!

Carolyn

P.S. Yes, this is a very crappy form of cancer....

Alice R. said...

Carolyn,
I don't know why my last few comments have never made it through, but I wanted to say (and am attempting again) that you have done a tremendous amount for all of us who follow you. You give us hope, good information, and a direction to tackle things. You have given much to many, not all so fortunate as you and I, but at least none of us is alone. I hope that I, too, can give back and help our fellow appendix cancer patients/survivors. I've certainly learned from you.

With much appreciation,
Alice

Alice R. said...

Trying again - don't know if my last comment went through. Somehow the system seems to lose comments.

Caroline, you have given so much to all of us who have followed you. You showed us that at least some of us will go on to resume "normal" lives, restoring hope, and making treatments worthwhile. You inspire me to keep working with the support groups, and give whatever I can, as another of those who is doing well.

Thank you, Caroline, for your time, and the many gifts you have shared.

Alice

Anonymous said...

I second those sentiments!!! Carolyn you have been a blessing to our family and to so many that I have sent to this website!

Even though we have never met, I am so thankful to have you in my life!

Kim

Anonymous said...

Carolyn,

I agree with Michelle...my husband was also diagnosed with this crappy cancer just 5 months ago and your blog has been a life line for me that there is hope of survival...God Bless you! You truly are an inspiration.

Term papers said...

Good Blog

Alice R. said...

Carolyn,
I've tried to leave a comment 3 times, but somehow the site isn't handling it correctly.

You have done a tremendous amount to help those of us diagnosed after you. You continue to help us look out for ourselves, find the appropriate treatments, and link up with fellow appendix cancer survivors. You are a stellar example, one in whose footsteps I'm trying to follow - to give back, as I, too, am doing very well 5 years post-cancer. Thank you for everything! So glad to have found you (years ago!)

Wendy said...

I'm sitting here unable to sleep because my CT is tomorrow and I'll find out if this horrible disease is attempting to grow in my stomach again. I stumbled on your blog accidentally and it gives me hope. My debulking surgery was in October 2011 and I've been in and out of the hospital since then due to complications. My children are 15 ,11 and 11 and I can't stand the thought of not being here to raise them. Thank you for your words of hope. I agree that it is important to share your story. You never know who you'll touch.

mike s said...

keep the spirit, do not give up, give the best in life, either for themselves or for those around us

Anonymous said...

Dear Carolyn, my husband Paul has been diagnosed with stage IV adencarcinoma GI primary. The suspected original site is the cecum and appendix. We live in a rural area and are feerling so lost in this process. My husband is a 30 year police vet as am I. we were slated to retire this year in our early 50's. We are seeing a reputable local oncologist for standard IV chemo and Paul is going through the first round of side effects from his first treatment this week. We need to know if there are other surgical options? We need some answers and the oncologist is not moving very fast. It will take us another 3 weeks to be able to see him in person. Could you help? Your site is a god send. Bless you. Cindy Adam

Anonymous said...

Thank you Carolyn for all of the information and helpful resources that you compiled. I am newly diagnosed (stage IIIb - signet ring adenocarcinoma ...and I am looking for a specialist that can treat my cancer. I also have 2 children - they are 10 and 11 right now...and I need to be here for them. I did hear from someone on the Cancer Survivors Network that Dr Sugarbaker is no longer performing HIPEC. I have a call into his office today to verify that information. It would really stink for me as he is the closest specialist to me - only about 25 mins with no traffic. But...I'll travel if I have to to fight this.

Alex

Rajeshwary said...

18Hi , I am also a survivor. I had Non Hodgkins Lymphoma about 17 years ago.I was 36 at that time and felt the same concerns u have written about. But it is your comment ( why me ??) which sort of came to my mind then. But immediately the thought came Why not?? And I realised probably it would be best to concentrate my thoughts on my treatment and healing rather than the really disturbing but futile feeling of Why me. Probably there is no answer to that.
My name is Dr Rajeshwary Kulkarni. I am a doctor practising in New Delhi India. I am also writing a blog on cancer called aadharforcancer.blogspot. I was just reading blogs on cancer and read yours.

Anonymous said...

My problems started in august of 2012 when appendix ruptured along with the tumor. Cancer was unknown untill biopsy was received on appendix. The right colon was removed along with 15 lymph nodes, none of which had cancer.

I have been on chemo since october 2012, with a break for body healing of 45 days. No definite sign of cancer but some 2 to 3 mm nodes in the lungs. they are not sure what they are due to small size.

have any information about spread to lungs? don texas August 20,2012