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.

Tuesday, November 20, 2012

Loose Screws and Skinned Knees - Turning Life's Obstacles and Adversity Into Opportunities and Adventure

I recently read a book on my new Kindle (didn't think I'd want to read books in an electronic format, but fell in love!),  Loose Screws and Skinned Knees - Turning Life's Obstacles and Adversity Into Opportunities and Adventure.  

The book was very inspiring.  It was written by Care Tuk, an 11-time cancer survivor.   While she didn't have appendix cancer, she had several other cancers, including ovarian, which is similar to ours.  This is the discription of her book posted on Amazon.com:

"Obstacles and adversity are common to us all. But turning challenges into opportunities and difficulties into adventures is the hallmark of a powerful, fruitful, joyful life.

Like many, you probably won’t believe the story of Care Tuk. Eleven separate bouts with cancer. Eleven separate victories. A near-death car crash at the hands of a drunk driver. A brain bleed that left her speechless and nearly immobile.  Ravaged by the painful side effects of DES (Diethylstilbestrol) – an experimental drug intended to save her life – her body is held together by bolts, screws, titanium plates, and 25-pound mono-filament fishing line. You can’t find a more dramatic, heart-wrenching, raw, honest, and inspiring story than that of Care.  It is a story of hope, a message of strength, and a tale of one amazing lady who overcame the odds and found significance and meaning in it all."

We all struggle with uncertainty after a cancer diagnosis, but can you imagine facing that many cancer diagnoses and still managing to live a full and productive life!? 

She also has a blog you can follow:   Care's Corner



 





Wednesday, November 7, 2012

Cameron Von St. James

I am republishing this post from a wonderful blog written by Cameron Von St. James about his experience as the spouse of a cancer survivor.  His wife, shortly after giving birth to their first child, was diagnosed with mesothelioma.   She is now more than a 5 year survivor!  She was treated by Dr. Sugarbaker. The link to his blog is:   Cameron's Blog
His wife, Heather Von St. James also has a great blog about her journey.  Her latest post is about scanxiety...which we all experience: 

 mesothelioma.com/blog/authors/heather/

Cameron Von St. James

Husband of Mesothelioma Survivor Heather Von St. James
2 0 1 2Jan26

The Other Side of The Equation; How I Coped With My Wife's Diagnosis

Cam and LillyMy wife has often commented she can't imagine what I went through after her mesothelioma diagnosis. I have only really talked to her once about my experiences as a caregiver and with this I hope to share more.

A Shocking Diagnosis

Three months prior to her diagnosis we celebrated the birth of our first and only child; our daughter Lily. We went from a time of great joy and promise to a period of fear and uncertainty. I can remember the day the doctors said “mesothelioma” for the first time. I remember looking into my wife’s eyes as she was crying from the news thinking,
"how are we ever going to get through this?"

I was feeling overwhelmed and on the verge of breaking down, when suddenly, the doctors questions about future medical choices brought me back to reality. That was the first of many days in which I would feel emotionally overwhelmed and still be required to make difficult life decisions with my wife.

Hardships & Sacrifices

Immediately following the diagnosis I was full of rage, anger and fear. At times, I was reduced to communicating with others by using only profanity. This included members of the Church and medical community. Fortunately, with time I was able to control my emotions a little bit better. I realized I had to be strong for my wife and daughter. They were depending on me. I had my moments, but I always tried to be strong when I was around my wife. I never wanted her to see my fears. I needed to be her rock, a source of optimism and stability. As with many things, this is easier said than done.
Cam & LillyRight after the diagnosis there were many days where I had an impossibly long to-do list. I had to deal with everything, from work and travel arrangements, to caring for our daughter and pets. At first I was overwhelmed but I quickly learned to prioritize and focus on the most important tasks. I also learned to accept the many offers of help we received from others. We were blessed to have so many people offer to help during this time. I am not sure what I would have done without all these wonderful people in our lives. However, even with all of the help, I still felt overcome with the responsibilities at times.
There was a two-month period in particular that Heather can’t imagine what I went through. It was directly following her surgery in Boston. Heather had flown to South Dakota to spend time with her parents, recovering from the surgery and preparing for the next phase of treatment, chemotherapy and radiation. Our daughter was also staying with Heather’s parents while I was home, working and trying to keep our heads above water. During this time I only saw Heather and Lily once.
Heather & CamOne Friday after work, I drove the 11 hours through the night, in the middle of a late season snowstorm to see them. I slept a few hours in the car, hoping the snowplows would have time to clear the roads. When I arrived Saturday morning I was exhausted. I spent the rest of Saturday and a little time on Sunday morning with them before hopping back in the car and driving the 11 hours back home to be at work Monday morning.

No Regrets

While it was extremely difficult for me to be away from my wife and daughter, I never look at this time as a loss. Instead, I realize it was the choice that made the most sense. There was no way I would have been able to take care of Lily and work at the same time. I don’t look back at this, or any of the other difficult choices we made with regret. I accept them as things we needed to do. The cancer diagnosis forced us to make many difficult choices, but I took comfort in the fact that we could still make choices.
If I learned anything during this difficult time it was to accept the offers of help from others, and to take comfort in the fact that having the ability make choices, although extremely challenging, was a way for us to maintain a level of control during a time of such uncertainty.

Wednesday, August 22, 2012

Heat It to Beat It 2012

I am again going to Baltimore for the third  Heat It To Beat It walk.  It is a great event, and though new, has been amazingly successful.  Hundreds of thousands of dollars have been raised to fight abdominal cancers like ours that respond to cytoreduction surgery and intraperitoneal chemotherapy.  I was almost in tears when I was there last year as I saw so many people who cared about helping us beat our cancer.  It was so inspiring. 

I created an Appendix Cancer Connection team this year...if you want to meet us in Baltimore or support our walk, check out this link:  Appendix Cancer Connection Team

I love that when I am there I get to meet some of you I have before only known via email!  Hope to meet some of you there!  I'll have a booth...and this year you can also meet my daughter, who will travel with me!

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.

Tuesday, June 12, 2012

The Second "C"

We all know the big C- cancer.  But there is a second C those of use diagnosed all want, the second C word is Cure. It seems like a word now not often used in the cancer community.  Though 11 years cancer-free, I am still considered "long term remission", still see an oncologist (thought only annually now).  The "cure" word we want  would mean we are forever done with cancer, don't need testing or oncology appointments, that we can move on with our lives and not feel vulnerable anymore.  But we don't get that word now.  We don't get the "second C".  I thought of that as tonight I received an email from WebMD....don't remember how I got on their mailing list, but the topic of today's post was "The Big Question: Am I Cured?". 

I remember in my younger years, if someone survived cancer free for 5 years, they were considered "cured".  But some cancers recur many years later- my aunt had a breast cancer recurrence 17 years after her initial diagnosis.   After 17 years of being cancer-free, her cancer came back.  Some renal cancer patients have recurrences up to 20 years later.  So now, the medical providers are afraid to use the word "cure", though we so long to hear that word.

Also, the NCI cancer bulletin was also delivered to me today, it seems the anti-depressant drug Cymbalta can help treat some of the peripheral neuropathy that we get from chemotherapy drugs like FOLFOX.  Read more here: Study Shows First Effective Drug for Cancer Patients with Peripheral Neuropathy






Monday, June 11, 2012

Cancer is fickle!

Cancer.  We all fear it.  When diagnosed, we all change our life perspectives and learn to live with uncertainty.

I'd have been grateful to only have breast cancer after being diagnosed with signet ring appendix cancer and learning of the survival stats.  Funny, I've developed a menu of "good" and "bad" cancers.  The best cancer to have in my book is basal cell skin cancer...almost never spreads, no chemo, remove it and you are done.  A complete cure.  I think thyroid cancer comes next.  Surgery, no chemo, usually also a complete cure, though you have to take thyroid meds (which I do anyway).  Prostate is also up there...sometimes without treatment it grows so slowly you'll die of something else before it gets you.  But me, I had a terminal diagnosis and an aggressive cancer and am cancer-free 11 years later.  My sister-in-law, who got diagnosed with breast cancer, now three years later has an untreatable recurrence.  Dan Fogelburg died of prostate cancer at age 57. I've always felt if I got diagnosed with breast cancer tomorrow it wouldn't be a big deal, highly curable, a lot less surgery and chemo than I had.  My daughter once told me, wouldn't it be ironic if I died of breast cancer after surviving appendiceal, though?

But sometimes the "good" cancers have a bad outcome and the bad cancers have a good outcome.  In my travels of the cancer world,  I've met a long-term pancreatic cancer survivor, a long-term lung cancer survivor....both who had my same statistics. 

Who knows...cancer is so fickle.  There is no fairness.

Thursday, May 17, 2012

Yet one more landmark!

Today I am an 11 year cancer-free survivor!  No one has yet used the "cure"word, I am still in "long-term remission".  The anniversary date for me is a personal one...I don't think anyone else in my family remembers the exact date,so for me it's a personal celebration. Funny how those of us with a cancer diagnose remember exact dates forever. I was diagnosed March 29,2001.  I had my cytoreduction surgery May 16, 2001.  I finished chemo January 22,2002. 

We all live with uncertainty after a cancer diagnosis.  Though I am 11 years cancer-free, I still live with some uncertainty.  I still don' t take tomorrow for granted,which is both a good and bad thing. There is security in assuming a future, especially a long one.  We all wannt to believe we will live to be 90 and will die peacefuly in our sleep. But most of us after a cancer diagnosis can't assume that. It's just a dream.

But I've come a long way.  After my diagnosis I couldn' t say the words "next year" for several years, as I didn't feel I could take another year for granted. But now I'm in school, I have a three year committment to a degree.  I couldn't have made that kind of a comittment a few years ago.  Progress after cancer, in a sense!  I'm sure we all measure progess differently.

Sunday, May 6, 2012

Another landmark!!

Yesterday I attended my eldest daughter's college graduation. Another gift!  I was given a terminal diagnosis when she was 11 and wanted so much to live to see her graduate from high school...now I've seen her graduate from college!  Amazing!

Sorry I haven't posted much here lately.  My web site is finally back up, but the carolyn@appendix-cancer.com email is not yet working. If you need to email me, instead use clanglielesnik@gmail.com.  Thanks!


Monday, February 27, 2012

YIKES!!!

I just realized my website is down!!  Apparently I failed to renew my domain, and now I am having trouble accessing the domain vendor to try to renew it.  If I access it, I'm going to renew the domain for 10 years so I don't have to deal with this again!  It explains why recently I have received no emails from newly diagnosed appendix cancer patients.  I thought it was just a lull....no, my domain email doesn't work either.  I'm so sorry to any of you who have tried to contact me.  In the meantime, if you need to contact me, you can email me at clanglielesnik@gmail.com.  I'm working on trying to get the site back up and the email working.

Also, I was recently in the hospital, not cancer related, but had a close call and again am glad to be alive.  I am fine now, and am leaving tomorrow with my husband to go on a 2 week Hawaiian  cruise to celebrate our 25th anniversary.  Yet another landmark I get to celebrate...we'd been married 15 years when I was given a terminal diagnosis.

Monday, February 6, 2012

Sorry!

If you've emailed me and I have not replied, it's because my email program crashed.  Will reply as soon as I can!  I know several have requested PROGRESS questionaires, I will get them to you as soon as I can!