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.