A not so private (cancer) community

Diagnosed at 21 years old with cancer went against everything I thought I knew about cancer (which wasn’t much at the time) and life (again, not much at 21!). I stayed active, worked out regularly, rode horses four days a week, ate healthy, never smoked. I thought I was the picture of great health. The cancer diagnosis kicked that idea.

 

I very clearly remember walking into a clinic in Mt. Pleasant to finally get an answer to the on/off knee ache that had bugged me for almost two years. I had canceled appointment after appointment at the doctor – too busy with my college social life and classes to go home to see a doc – but the ache started affecting my riding ability. I walked out of the clinic a different person.

 

My official diagnosis of osteosarcoma, an aggressive form of bone cancer, came quickly. I was lucky to find a top oncology surgeon at Beaumont Hospital who believed in limb salvage and saving his patients. I’ll forever be grateful that the Chief of Pediatric Oncology welcomed me to his practice and ensured I was treated on the pediatric unit.

 

Being treated in pediatrics certainly had its perks. The younger kids made me laugh with their antics; my nurses seemed to have more time to talk with me and ensure my spirits stayed up; the doctors didn’t hesitate to spend time listening to my concerns and aches. Yet it also brought challenges – no one else my age appeared on the hospital floor when I was there. Children and teens were the typical faces on the floor. Understandable, of course, since I was in pediatrics, yet still lonely. I didn’t have anyone to talk with who really knew what I was feeling – to be 21, on the verge of adulthood; frustrated to be putting my life on hold right as I graduated from college; flustered to have to rely on my parents so much after four years at college, yet also terrified that I was legally an adult and my parents couldn’t make certain serious decisions for me; scared that life would never be the same, that my friends would move on without me; confused by the emotions streaming through me daily; desperate to feel “normal” and know it’s ok to laugh and still make plans for the future.

 

Throughout my cancer ordeal (really, it’s tough to find another word to describe), I was blessed to have family and friends who provided a steady stream of visits, phone calls, laughter and support. It was still challenging. Even surrounded by so much love, I still felt a bit isolated.

 

There weren’t nearly as many organizations for cancer survivors as there are now, especially for young adult survivors. So I wanted to share information on a few organizations that I’ve had personal experience with and believe provide excellent support to cancer survivors, their families and friends:

Camp Mak-A-Dream: I blogged about this organization a few months ago so you can learn more details below. Located in Montana, Camp Mak-A-Dream provides an amazing experience for children, teens and young adults touched by cancer. This organization remains at the top of my list of those that made a significant difference in my life as a cancer survivor. The experiences I had, and friends I made, helped me find direction and embrace being a cancer survivor. If you live in Michigan, check out the state chapter for help on getting to Montana.

 

Gilda’s Club, The Wellness Community & Cancer Support Community: These organizations, all part of the same affiliate network, provide free social and emotional support to men, women and children, living with cancer, their families and friends – at no cost to those who attend. Support groups, workshops (yoga, guided imagery, art, etc), education lectures and social activities ensure people affected by cancer receive the tools and support they need. Our local Gilda’s Club provided great support to my family and me after my treatment and my dad’s death from cancer. I embrace the mission of this organization and personally experienced the benefits of being involved in a cancer support community. (In full disclosure, I’ve been a member, volunteer and currently a staff at Gilda’s Club.)

 

Lance Armstrong Foundation/LiveSTRONG: Your head is stuck in the sand if you’ve never heard of this organization, named after the famous Tour de France winner and cancer survivor.  You may not, however, know the many resources this organization provides to people touched by cancer. I visit their website often and find something new each time. I had the honor of being on a committee to edit a guidebook published a few years ago by LAF. It was an amazing resource for cancer survivors. Check it out.

 

Imerman Angels: This organization matches a person with cancer with someone who is a survivor of the same type of cancer. Cancer caregivers (spouses, parents, children and other family and friends of fighters) also can connect with other caregivers and survivors. I like that they stay focused on their current mission of providing one-on-one support. With the increase of social media and online tools, it’s much easier to stay connected. Great inspiration for all involved.

 

American Cancer Society: I’ve been an advocacy volunteer for years for this organization, encouraging legislators to stop smoking in restaurants/bars (yea, Michigan!), give more funding for cancer research and stop discrimination against survivors. ACS focuses on education, research to find a cure and advocacy (rights of survivors, more government funding for research and treatments, etc). I love their new slogan, The official sponsor of birthdays – awesome commercials.

 

 

There are hundreds more organizations that strive to make a difference in the life of people touched by cancer. The reality is that no one is ever alone once you’re touched by cancer. It’s a larger ‘community’ than one can imagine. More than 12 million cancer survivors live in the United States – and that’s people diagnosed with cancer, not the million more who are parents, spouses, siblings, family members and friends touched by the disease. And that’s just the United States, not global.

 

So I hope you never feel alone, as a survivor, caregiver, whatever your role. Find support, find love and find your smile.

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