Thursday, May 20, 2010

Warrior #2: Pat

My name is Pat Killingsworth, and I have multiple myeloma.

I have lived an adventurous and interesting life. I have been a teacher, counselor and coach. I operated a ski and golf resort, built and ran a health club in the 1980's, sold “swamp land” for a developer in northern Wisconsin lake country, opened and operated a number of tourist-type retails stores (you know, the kind that sells bear and moose print table cloths and deer antler lamps) and seven years ago opened a real estate office before the bottom fell out of the market a few years ago.

My wife Pattie and I met 26 years ago and have been together ever since. Because she first had cancer at the young age of 34, we never could have children. Instead, we ran his-and-hers dog sled teams, living in a log cabin on 30 acres in the northwoods of Wisconsin for 11 years. There we started an animal rescue group, called Critter Rescue, and built an animal shelter. We also started a large family together, made up of rescued sled dogs and a number of stray cats.

I already mentioned that my wife, Pattie, is a cancer survivor. She has endured and beaten cervical, uterine and later ovarian cancer.

After years acting as Pattie's caregiver, it was my turn to be the patient in April of 2007, when I was diagnosed with multiple myeloma. I have faced some rough times: bone damage, lots of chemotherapy, blood clots and more. But I am still here today!

I understand the purpose of this site is to help patients and caregivers realize that cancer does not define them—that one can “get their life back” after dealing with cancer.

I know first-hand this can be done—my wife is living proof. Pattie doesn't dwell on or think much about her cancer. She is a survivor. She doesn't talk about it unless asked. She doesn't read books about cancer or attend support groups. Pattie thinks about her long and successful fight against cancer as little as possible.

Contrast that with my situation. I eat, sleep and breath cancer. I turned my cancer into an opportunity. An opportunity to help other patients. An opportunity to share what I have learned about my struggle—and the struggle of my wife and other patients and caregivers I deal with each and every day. An opportunity to start a new career as a medical writer. Yes, I write about cancer. I write daily on our two blogs, www.HelpWithCancer.Organd I write freelance articles for The Myeloma Beacon and other publications. I attend cancer related conferences and conventions. I speak to support groups. I have written a book, Living with Multiple Myeloma, so other patients can learn from my mistakes.

Cancer helped me find a career I love as a writer. Cancer helped me find meaning and purpose in my life.

So here you go—two completely different examples of how cancer survivors live and deal with their new normal. Both ways work. So do a number of other models you can find on this and other sites.

My advice: Cancer patients—take charge of your lives! Decide why and how you are going to live with your cancer—then do it! Live! Treasure every hour of every day.

Feel good and keep smiling! Pat

Friday, April 23, 2010

Warrior #1: Frank

I am Frank, a 61 year old, 7 year survivor of Multiple myeloma. My note attempts to consider the range of feelings, fears and wonder that has imprinted my awareness since learning I have cancer. Like many I work through or more accurately consider as I breathe, the finality of the inevitable; thoughts which strike suddenly, randomly, at any time of night or day.

Thanks for looking in:

Living with cancer can seem overwhelming at times. There is no point in self pity but fatigue, psychological and physical, is a great and destructive weight on the will.

The exigencies of the treatment process steal time from everyday obligations, which continue unabated with the intensity, complexity and unrelenting demands that have always been. The need to be at work is no longer related to career advancement or a bigger bonus. Keeping the job, no matter what it takes to be in early and consistently, is critical as a way to maintain the insurance that pays for the expensive treatment of advancing cancer. Medical appointments take time from work so you sacrifice vacations to avoid becoming an afterthought to management.

The work around the house has to get done; dogs must be walked, tax documents organized for the accountant, the kids helped with homework, spousal disagreements negotiated, and the trash taken out. Chunks of time for treatments like radiation and chemo therapy, blood tests, bone marrow biopsies, drug infusion, and for some, major procedures like a stem cell transplant, must be normalized to the schedule of your life.

Diminished family time forces decisions like retirement from coaching kids’ soccer or quashing a formalized date night with a significant other. Private time is over but for the brief stretch of time between hitting the pillow at bedtime, and the 3 a.m. adrenalin jacked awakening to a cacophony of dreamed voices shouting mad, clamorous demands.

Comes the dawn, you throw back the warm covers and drive off the phalanx of importunate obligations, rising resolutely to meet each new day. Awareness exists with every conversation, however insignificant it might seem, that one’s being is visible in other eyes, a recognition of a distinct, vibrant presence.

From time to time there happens a moment, alone in the elevator at the close of the business day perhaps, or while sitting apart in the crowded waiting room of the Dana Farber Clinic. Lonely thoughts go to those you love and worry for; those who bring joy to your life and at the same time rely on hearing your voice, responding to the emotional and intellectual significance of that sound in their lives.

The anticipation of a stunningly abrupt end to this living vibration and the inexorable fading of your presence from the minds of loved ones, the absolute extinguishing of one’s voice for all time, are terrifying to contemplate as the time draws near. Thus the desperate fight to live for one more day, one more hour or one more breath, refusing to submit to the dissolution and dispersion of 'you', into the black void of the universe.

You can follow Frank's blog at Be Still and Know That I Am God

Friday, April 16, 2010

Our Story

Although there is no proper way to tell your own story, I think it is probably best to compile a list of suggestions.

I ask that you start off your story with two simple words: "I Am...". Then let it all out.

Tell us your name.
Tell us when you were diagnosed.
Tell us the lessons you learned.
Tell us of your trials and of your triumphs.
Tell us of your deepest, darkest point and what that felt like.
Tell us what keeps you motivated and inspired, what keeps you going.
**Tell us WHY you consider your story a success. Be it because of your outlook or the 5,10,15 year remission you have achieved. Remember, success is what you define it as**

These are just some ideas. Feel free to include everything and anything else you can think of! If you like, contact information and/or a photo as well as the link to your own website!

Please send your stories to: (Header: Humanity4Hope)

I hope to hear your story soon,


Thursday, April 15, 2010

A Call to Arms

Hello friends,

My name is Lance. I have been thinking for a little while about putting together a site with a collection of survivor and success stories to serve as a platform for hope and inspiration.

Drawing from personal experiences, a cancer diagnosis can feel like an almost certain death sentence. For me, that time was undoubtedly the darkest moment of my life and that of my family member's lives. There is a certain feeling of hopelessness that one often feels during this time, it is a deep hole that sometimes seems impossible to climb out of. However, through this site, we can work together towards building a place where that light of hope we once thought distinguished can be ignited again. A cancer patient's life is full of many highs and lows, as I am sure many of you have experienced. If we can somehow minimize these lows and help lift each other up through these stories of hope, I truly think we could open up a world of good. We often place such a strong emphasis on the importance of drugs and science, yet sometimes forget the pure strength that hope can provide. Hope, in and of itself, can be one of the strongest forms of treatment that we can give ourselves. Sometimes, it is all that we need.

Together we can help push each other forward, because it is important to always remember that we are never alone on this journey. Tell us, tell the world, your story. Together, we can all help lift each other up. Out of the darkness that is a diagnosis, that is depression, that is disappointment. I called this blog Humanity for Hope because I envisioned it a result of a united front working, fighting, for hope. I have discovered just how beautiful and strong this community is. We laugh. We cry. We inspire. We push. We rally. We support. And we fight with a fierceness comparable to legends. Our bravery and our courage is truly quite remarkable. We, a group of people so weakened and devastated by disease, find strength in each other to conquer and fight our greatest fears. Consider this my battle cry against hopelessness and despair, something that we can all work together to extinguish. I urge you to join me in the fight to end cancer once and for all!

Please send your stories to: (Header: Humanity4Hope)