Survivorship

Survivorship is a relatively new term in our collective vocabulary. It represents both a positive direction in medical advancements, and at the same time, a host of new long-term impacts from traditional cancer treatments as people are living longer with the disease. My friend Matt just published a great article about this on the Huffington Post.

Many people are confused about what to call themselves or others when they are diagnosed with cancer. If you just found out yesterday that you have the disease, are you a survivor today? I say absolutely YES, and many others agree with me. Surviving the diagnosis is nothing to sneeze at, and those initial days can truly be the most difficult part – emotionally, if not physically. Wrapping your head around the idea that your life is now changed forever is no small task. Staring your mortality in the face is scary.

Being a survivor and living strong are empowering. Wouldn’t you rather be called a survivor than a cancer patient or worse, victim? We can borrow some wisdom from other areas like sexual assault or other forms of abuse. Being a survivor rather than a victim is always preferable. The minute you receive the diagnosis, you are surviving cancer, and every day you keep on breathing after that, you will be a survivor. June 7 is National Cancer Survivors Day, and believe it or not, this day has been observed for 22 years now. I hadn’t heard of it until last week, which was, incidentally, my 3rd Cancerversary (May 23).

My friend Ethan Zohn was recently diagnosed with a rare form of Hodgkin's. You may recognize his name as the winner of Survivor Africa. His new status gives a whole new meaning to his moniker as a "survivor." I was always proud of Ethan for the way he played and won Survivor, and for what he did with the prize money - invested it in a non-profit he founded called Grassroots Soccer which utilizes soccer players to do AIDS/HIV education in Africa. I'm sure cancer hit Ethan especially hard since his father died of the disease when Ethan was only 14-years-old. As he has overcome other challenges in his life, I know he will do so with this one as well. Watch him talking about cancer on CBS's Early Show here.

National Cancer Survivor’s Day is an annual, worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be a reality, according to the website.

I met a pediatric neurological oncologist at a 4th of July party days before I was scheduled to begin chemo in 2006. In addition to pumping him for information about my chemo drugs and what kind of side effects I could expect, I shared my awe that he could do his job day in and day out. “Working with kids who have brain cancer must be so hard,” I mused. “Actually,” he said, “it’s way better now than 20 years ago when I started – many of the kids actually live now.”

Wow! Medicine really has come a long way. Many of those kids are experiencing side effects later in life from the toxic chemicals used to treat their illness, but at least they are alive. Survivorship brings up a whole host of new issues for us to focus on, such as fertility issues for young adults, long-term side effects of treatment, emotional issues and financial ones too (all these new medical advancements cost ALOT of money). These are good problems to have because they mean that the “patient” is still alive to have them, but they need to be addressed nonetheless.

I am proud to be a survivor, and whatever issues I have to deal with pale when measured against more time with my family and friends, important work to do, writing something that might help someone else going through a challenge, and great adventures and travel to experience – the joys, and sorrows too, of life. And I can’t say enough about the wonderful people that I have met along the way on this cancer journey. It’s a club that no one wants to join, but an amazing community once you are part of it. Here’s to the survivors!

70K - Aged 15-39 Diagnosed with Cancer Yearly

I just found out about one of the coolest efforts on behalf of young people with cancer. Did you know there were 70,000 of us diagnosed every year? Did you know that while survival rates for most age-groups have improved dramatically over the past 30 years, for people 15-39, not so much. Not at all, even. Whether it's access to screenings or being taken seriously by doctors, this problem clearly needs some attention. If you support the rights of this group in dealing with their cancer diagnosis, please go here: http://www.seventyk.org/ and sign on as a supporter of this: (Watch the video too.)

Adolescent and Young Adults Cancer Bill of Rights.

We are neither pediatrics nor geriatrics,
we have unique needs - medically, socially, and economically.

However, the rights and dignity of adolescent and young adults are
equal and vital to all individuals.

We deserve to have our beliefs, privacy,
and personal values respected.

Access to care is a right,
not a privilege.

Our rights, as we perceive them to be and intend to preserve them, are:

1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.
2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.
3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.
4. The right to be informed about available clinical trials and given reasonable access to them.
5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.
6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.
7. The right to “generationally applicable” psychosocial support.
8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.
9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.
10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.

Preserve our potential.

Hooray for 70K.org Help spread the word!