"Hey! Why Does She Get Handicapped Parking?"

With her scars and port-a-cath covered, Christy walked around looking like any other young 20 or 30-something. She preferred being treated as "normal", and she tried VERY hard to appear as such. Often she even refused to ask for help, and those around her wouldn‘t even realize her need until they found her, for example, passed out on the floor in her room. She was overwhelmingly stubborn that way. An admirable, yet frustrating quality for those of us wanting to be a source of support for her.

Often this exterior “normal” facade conflicted with the illness and battle raging inside Christy’s body and mind. She resented the fact that she couldn't always just push through the pain and side-effects of chemo and surgery, but even she had to admit at certain points along her cancer journey that she just couldn't do it all -- and she couldn't always hide how miserable she was feeling at times. Another fact she resented.

During the times when Christy did work up the courage to ask for help, she found some people would actually question her need for "special treatment." Like wheel chair service at the airport -- or the extremely coveted handicapped parking spots: "She's, like, in her 20's! She has her youth and her legs seem to work just fine, so what does she need handicapped parking for?"

Casual observers and individuals ignorant to the severity of her illness lacked empathy and would quickly pass judgment. This kind of took its toll on Christy after awhile -- finding that balance between wanting to appear "fine," but also wanting acknowledgement for her private suffering and personal achievements in the face of mortal obstacles.

I believe most would agree that few are more deserving of kindness, patience and compassion than an individual fighting for his/her life on a daily basis. But how are we on the outside to know the true reality of another's inner experience? Especially when "normal" and "fine" is all we can see?

I guess the message here boils down to the "Golden Rule". Everyone has their own struggles and pains. So, have an open heart and an open mind...and be patient with yourself and others. Life demands it.

Also, for those of you struggling with cancer -- or any chronic illness -- please learn to open up to your close friends and loved ones. Believe me, we want to help, but we don't have the faintest idea how. So, share those burdens! Trust me when I say that, denial aside, we are quite aware of your illness and are scared of its possible consequences. Sharing these mutual fears can be so cathartic for all. Speaking the fears out loud can also suppress the power of those fears over your life. Honesty and openness can be so empowering in the face of chronic or terminal illness.

I never really knew Christy until she became ill and was finally able to discuss her deepest hopes, fears and thoughts regarding life, death, the future, relationships, dreams, family, etc…. It is these privileged conversations that stay with me to this day. I cherish them. They give me something to contemplate since her passing, and I find they often make me smile fondly at her memory.

~Mandy

Jazz Hands vs. Spirit Fingers

Whether it was in imitation of "Fosse," while singing tunes from "Cabaret," or just lying around gleefully watching "Bring It On" -- let's just say that Christy was not shy about whipping out her jazz hands.



She actually promised me and her family that she would appear to us as a ghost by scaring us with jazz hands when we opened our closets. I keep daring her to go all Liza Minnelli on me, but as of yet, there have been no spirit fingers looming in the depths of my closet.



I suppose I should introduce myself before I go on. My name is Mandy, and Christy was one of my dearest friends. Last March 2009, I accompanied Christy to D.C. for the Colorectal Cancer Coalition's Call-on-Congress. Christy was actually a Grassroots Advocate for California and a mentor last year. I was so proud of her -- where she found the energy and drive in the midst of her illness I will never begin to understand. I also realized at the end of our week there that she had given me an amazing gift: an active way to help her fight colon cancer.




So, instead of becoming all-consumed in my worries for her and about the future, I was able to join her in a march up to Capitol Hill to ask our congressmen for their support in stamping out the high incidence of deaths associated with this type of cancer in its later stages. Specifically, we asked them to co-sponsor HR 1189: The Colorectal Cancer Prevention, Early Detection, and Treatment Act. We also requested their support in adding colorectal cancer to list of diseases currently studied by the Department of Defense's Cancer Research Program. Sounds strange? Well, the D.O.D.'s program has played a big part in the advanced research associated with breast cancer; and now breast cancer's rates of detection and survival are so much higher. Our hope is that we can say the same for colorectal cancer in the near future.




Here are the current facts: Colorectal cancers are the 3rd most commonly diagnosed cancers among both men and women; and it is the second leading cause of cancer deaths among both genders as well. The hopeful part is that, if caught in its early stages via colonoscopy, there is a 90% survival rate!



So, it becomes a matter of educating the public about the signs and symptoms of colon cancer, as well as getting them to actually go for their colonoscopies at the age of 50+, or when they are experiencing symptoms associated with this cancer. We then need to ensure that there is no obstacle to their actually getting the colonoscopy (i.e. insurance loopholes, lack of insurance, lack of money, etc). These are the kinds of things we are trying to get implemented into the fabric of our healthcare system as advocates of C3. If Christy had only been given a colonoscopy, in spite of not having insurance or the money to pay for it at the time, maybe her cancer would have been caught at a more treatable early stage. Instead, it was not discovered until at least 5 months later when the tumor had perforated her bowel, and had already spread to her liver.




This year I was able to attend C3's 4th annual Call-On-Congress in the hope of carrying on Christy's advocacy work for her. I was surrounded by all of the other amazing C3 advocates - survivors, their loved ones, and other caregivers. We once again made our way up to The Hill where we shared Christy's and all of our other personal stories. We were armed with facts and statistics that were hard to argue with, but it was those stories that made the biggest most lasting impression. Some were sad, some were hopeful, some were painful to tell and hear -- all were honest and heart-felt. These stories -- your stories -- have an impact. Sharing them can make a difference in ways one could never even begin to imagine.


Thus far, we have succeeded in getting colorectal cancer added to the DOD's Cancer Research Program -- which is pretty dang awesome. We have also convinced many new Represenatatives to co-sponsor HR 1189. We are also working on getting support for a new bill: HR 1330 or The Colorectal Cancer and Screening Act, which would help close loopholes in insurance plans that prevent coverage of colonoscopies.





Will our efforts get the legislation we are pushing for to the House and Senate floors for a vote? I hope so. I do know, though, that we will not give up the fight. And we will do it with our heads held high, our hearts on our sleeves, and with our jazz hands making ripples of hope and change in the atmosphere.

~Mandy