“Cynthia Chauhan has compiled an excellent and very readable book of essays on kidney cancer called “Incidental Finding”. The contributors are a mix of researchers and physicians from the Mayo Clinic and kidney cancer survivors who tell their own personal stories. Cynthia is making the book available without charge to kidney cancer survivors/caregivers who request it. A generous contributor is allowing ACKC to distribute the book without charge as well to residents of North America.

Cynthia, as well as being a kidney cancer survivor herself, is a clinical social worker in private practice in Wichita, KS. She has extensive experience as a group worker including support group work with kidney cancer patients. She is a member of a number of professional organizations including being on the Patient Advisory Board of the Coalition of National Cancer Cooperative Groups. She has also published in professional journals.

We thank Cynthia for making her book available to a broad readership. The more knowledge we have about our disease, the better we are able to fight it. The book is dedicated to Steve Dunn, who was the first and most eminent kidney cancer advocate until he died prematurely in 2005, at age 49, from meningitis. Steve was the creator of the CancerGuide website and the ACOR Kidney-ONC listserv.”

If you want a copy of the book, go to  Contact ACKC page and enter your name, address, email, and note “CHAUHAN BOOK”, and allow a couple of weeks for delivery.  (from Action to Cure Kidney Cancer)

New Year's Guest Blogger

I wasn’t looking for a Guest Post particularly suited for the New Year.  And yet the post I found was exactly addressed to the New Year theme.  This is the first Wednesday of 2010, the year’s first opportunity for a Guest Post.  And the first blog I clicked on featured the post “Purpose in Pain” whose forward-looking theme seemed an ideal meditation for all of us in the cancer community.

Carolyn Langlie-Lesnik RN BSN writes at her blog Appendix Cancer Survivor’s Blog. In this post Carolyn reflects on the theme of the transformative potential of the cancer experience, on how, in very subtle and unsuspecting ways, we become more attuned to the essential things in life.  A very positive way to start the New Year.

Maybe I’m going out on a limb here, but I guess I spend a lot of time thinking and contemplating and reading. Maybe because I live in the cancer community, a place where pain and heartache and struggle reign. I think about it a lot.

After I had survived longer than I was expected to, I became obsessed with purpose. If I had survived against all odds, I felt I must be here for a reason, and I was obsessed with learning why I had survived, what my purpose was here. I thought if I’d survived when I wasn’t supposed to, it must be for a reason. I HAD to understand my life purpose, I had to justify my survival. I had to be worthy.

I read lots of books about purpose. One was “What Color is Your Parachute”, written Richard N. Bolles, a former Episcopal clergyman. What intrigued me most about the book was a single chapter, which was later published in a single small book “How to Find Your Mission in Life”. In that chapter and book, he contemplates that maybe before we were born, our eternal soul existed and gave permission for us to be on this earth and to deal with what we would suffer here, knowing that it was for a limited time only. What if we, from the other side, gave our permission to experience the events and pain we would suffer here, knowing it would serve an ultimate and greater purpose? Knowing that we had a mission and knowing that we would eventually come home to where things were right and just, where we would later be whole again.

That gave me a sort of peace. Maybe we are all interconnected and our trials in the end are for a greater good. One example…my daughter has a deaf cousin. She learned sign language to communicate with her. That same cousin had a very disabled brother who died at age 4 after suffering a life of disability..he was never able to communicate, eat, even breathe well. In the end she is pursuing a career in special education and works for a group home housing many disabled adults with severe autism. Her heart is for the handicapped. She has a gift for dealing with the severely disabled. She worked with the disabled at her high school, and taught sign language to some who were mute, giving them the first chance they’d ever had to communicate with others. Maybe dealing with two disabled cousins gave her the ability to profoundly affect the lives of many who are disabled. Maybe the disability of her two cousins will in the end help her help hundreds of disabled kids. So maybe from her cousin’s pain there was a greater good.

I read once of a very educated and intelligent man who gave up his career and spent years working with the very disabled. Though they could not communicate with him, he said they taught him more than he had ever learned before…about appreciating health and wholeness, about unconditional love.

A young adult I consider my “adopted son” was profoundly affected by the accidental death of his father at a young age…but he has become gifted from that experience in the way he is able to support and relate to others.

Maybe in the end all of our suffering is for a greater good. Maybe kids who lose parents to cancer will in the end be able to help others in a way no one else can. The child of one patient I know who had appendix cancer in the end as a teen formed her own non-profit to raise money for cancer research.

Maybe the effect of our pain on just one other person will cause that person to positively influence hundreds of other. Maybe our pain is interconnected in a way that achieves a greater goal, even if we can’t know it from our perspective here and now.

Maybe even small events in our lives cause a ripple effect that change the world. Maybe there is a bigger picture we don’t understand..yet. But maybe we will one day.

from: Appendix Cancer Survivor’s Blog

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Today I would like to republish a couple of posts by Michelle, a young woman from Long Island, who has been battling a rare sarcoma for seven years, enduring a number of brain surgeries.  Her blog is entitled “Sarcoma Chic”.  She writes at It’s My Turn to Kick Sarcoma’s Butt! In these two posts she writes sensitively and with humor about dealing with an impending relapse.

My Plan

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I mentioned in Friday’s post that I had discovered a whole new, heart-rending category of cancer blogs – those devoted to children with neuroblastoma, the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an annual incidence of about 650 new cases per year in the US. Many children do not survive this disease.  Today I am proud to present two posts about individuals that have.  Both contain good, insightful writing – my primary criteria for inclusion in the weekly Guest Post feature.

The first selection is by Connie Powell,  mother of Miss Madelyn, who keeps up communication at CaringBridge.org – missmadelyn.  The post speaks for itself.

Miss Madelyn

Dates that change our lives- Dates we never forget- Today is one of them. Nine years ago today- the day Madelyn was diagnosed with cancer. As I look back on May 9, 2000- that day brings back so many painful and sad memories. It started out as a “normal” day with Madelyn being the very sick baby she was. Bob took Allie to daycare and went to work. I took Madelyn to our clinic for her ultrasound of her liver. I had called to get a follow up appt with her primary doctor following her ultrasound, so he could look at all of the mosquito bite like spots that kept appearing on her body- and then disappearing. During the ultrasound, I knew something was definitely wrong. The tech left the room and returned with other techs, to show them what he had seen on the screen. I questioned them if they could see her liver was enlarged. They looked at me with the sympathy look and said yes. Another tech had stuck their head in the door and told me I needed to go upstairs to see Madelyn’s doctor before leaving.

I knew I had an appt, however- they didn’t- so I knew at that point something else was discovered during the ultrasound. Never in a million years did I suspect cancer. We were escorted into an exam room where I held Madelyn as we waited to her doctor. I remember when he walked into the room, pulled his chair right in front of us. He gently started rubbing rubbing Madelyn’s head and asked me what was going on with her. I started explaining Madelyn’s bug like spots- as I was telling him, I knew he wasn’t listening to a word I was saying. I saw the sadness in his eyes- the tears were filling his eyes, and I could tell something was definitely wrong. I stopped in middle of my sentence- and said, “Something is wrong with her.” That is when he said, “Madelyn is very sick. She has cancer.”

In a blink of an eye, the normal life I thought we had lived suddenly was changed. It started out as a normal day…I remember the sunshine and the happiness in our house that morning….and ended with us being in Children’s Hospital- so cold and scared. I remember stopping by the daycare center- pulling Allie into the car with us, trying to explain to a five year old that her sister was sick and we had to go to the hospital. She was so innocent. She saw Madelyn throwing up so many times a day- that was her normal. She had gone with us to previous doctor appts and thought we were going to do the same with her this time. As we said goodbye to her, both Bob and I cried.

I remember all the phone calls we made that day- changing their lives to. I remember hearing the pain in their voices- the fear and sadness they felt. It is like my brain has recorded every minute of that day- and all it takes is for me to hit replay- and I can relive it over in my mind and feel the raw emotions of that day. We had never heard of Neuroblastoma prior to that day. I had her Oncologist repeat that scary word and even spell it for me, as I wrote it on a napkin. Late in the evening, as Madelyn was sleeping in her metal hospital crib, both Bob and I tried to get some sleep in her hospital room- knowing May 9th was a day we would never forget.

Yes, dates that change our lives. Even though it’s been nine years, and Madelyn is doing so wonderful- I have learned to embrace the events of the day. Even though the day is painful to relive, it allows me to truly remember all I have to be thankful for. All the gifts and the lessons we gained, the people who have touched our lives, the friends we have met along this journey – yes, I feel so blessed. Today- I will hug Madelyn a few more times- hold her a little tighter- touch her a little more- smoother her in love a little more- make her laugh a little louder- and make her smile last all day long.

from: CaringBridge.org – missmadelyn

My second selection is written by a young man, now in his twenties, who was diagnosed with NB at the age of six in 1991.  He suffered two relapses, the last in 2006.  Erik Ludwinski is alive, volunteers working with kids with cancer, and writes with perception at CaringBridge.org – erikludwinski

Cancer is so much more than a medical case. It’s a valuable lesson in human behavior under stress. Psychologists have probably examined and analyzed it’s effects in all kinds of situations, recorded typical behavior, and teach it in psychology classes–that I’ve managed to avoid so far–but the reason I feel I don’t need to be taught about behavior under stress, is that I can’t really get away from it. I live in a cancer environment whether I like it or not, so I naturally learned about it from my own experiences.

By now, I think I’ve gotten a pretty good handle on it. I remember bursting into tears with my mom on the ride home from Fargo, after hearing that I relapsed for the first time. Now, four years later when my doctor tells me the cancer is progressing into my head and around my hip, I know how to take the information analytically instead of emotionally. I know when to consider my situation carefully and when it’s best to distract myself with other things. After all, it would be unhealthy to keep myself in a constant state of worrying.

Better yet, I’ve also used my experiences to relate to other patients much more effectively. I can teach them my own methods of dealing with pain and stress. While encouragement from any source is greatly appreciated, there’s something special about someone who can honestly say, “I know how you feel”. This places me in a great opportunity to help others… at least those in similar situations.

By similar situations, I mean cancer patients. Not parents, not siblings, not friends or relatives of people with cancer, but individuals undergoing treatment for cancer. I’ve experienced cancer as a child and as an adult. I know what chemo tastes like, I know what radiation smells like, I know what surgery feels like… but at one point I realized, that was it. I still have no idea what it’s like to see my older brother sick and in pain, too young to understand what is wrong. I have no idea what it must feel like to hold my child ravaged by a disease I have no control over. There’s no book that could describe it either.

I’ve been dealing with cancer for the past four years… but so has my Mom. I have no idea how she must feel each time my doctor tells us bad news. God has given me amazing support through her and thousands of others. I’m secure, but for every person who calls me an inspiration, I hope they understand I would never be as strong without her. It’s not my fault I got cancer and put her through this, but it is my fault for every moment I don’t remind her of how much I appreciate her.

If you have a moment, please remind her how valuable she is and pray God gives her peace through this too.

from: CaringBridge.org – erikludwinski

cancer