Don’t waste your cancer.
My particular cancer is non-small cell (non-smokers) lung cancer, driven by an “ALK” gene. That is why the group I belong to is called Alkpositive.org. It was from someone in this group that I first heard this term. I like this idea. It suggests that we can use our cancer for some kind of bigger purpose. This speaks to me, as a “silver linings” kind of person. That is not to say that I will ever celebrate my cancer. I will not. It has taken too much from each of us to ever be celebrated. Like all of you, we want cancer to be eradicated, in all its forms. But in the meantime, what can we do to “not waste our cancer?”
This blog is a perfect example of how all of us do not “waste our cancer." I read your blogs, and so many of you have given me hope, or made me think, or taught me something. It is a good forum for us to share advice, advocate, or educate. One never knows how much blogs like these translate into solutions. Our writing has become a way for us not to waste our cancer.
Another way that comes to mind are research trials. More research means more life. We need trials to help figure out how this disease works, so we can get it to stop working. Trials are one way to not waste our cancer and can be really simple in nature. I have been in a few – from surveys, to spitting in a vial, to donating my blood.
Advocacy is another avenue that comes to mind in an effort not to waste our cancer. This blog can help with that. So can being connected to a bigger cancer group. For me, that means Alkpositive.org, the group of people also fighting the same cancer as me. It started as a support group and grew into a non-profit organization, with a real-live board, and where members can raise funds toward Alk+ research (which in turn helps other cancer types). Still a support group, we also count as members those oncologists that specialize in “our” cancer, and make sure we are an educated group on the most recent trials and research. I have seen firsthand how sharing this information has led a member to a trial or procedure that prolonged that member’s life. It is not a surprise then, that I advocate for other cancer-fighters to become part of their own cancer support groups, and maybe help them grow. Within this group, I can not only advocate for certain ideas, but I can also raise funds toward our research, which I do. On a smaller level, I started a book club within this group, as a way to connect with and support others. It isn’t much, but collectively there might be viable ways in which we can work to not “waste our cancer."
I have also advocated for exercising with cancer, both within Alkpositive.org and this blog. This helps fellow fighters not only feel better through treatment side effects, but (according to some studies out of Memorial Sloan Kettering Cancer Center) exercise actually increases overall survival rates. It is my hope that we all find a way to move through cancer, to feel better and live longer. If I got one person to take a daily walk, then I have found a way not to “waste my cancer."
Another area that needs our attention is the fact that zip codes affect cancer fights. This was recently brought to my own forefront. I am fighting my cancer in Connecticut, near a well-known cancer center and not far from two others. I just found out my mom, in Maine, has a certain type of lymphoma. I don’t know any more than that because I am still waiting for her biopsy appointment. This was after a month of waiting for the CT scan appointment. In comparison, I went to my primary doctor on a Monday, had the necessary tests that week, and by Thursday, had my cancer diagnosis. A few days later, I met the oncologist. That is the difference between care in the four hours driving distance that separate my mom and me. I am trying to be patient in waiting for the appointment, and hope that the cancer isn’t aggressive. I wondered if anyone had tried to find a solution to this very real problem and stumbled upon a Chicago organization called Equal Hope. This non-profit specifically targets cervical cancer and breast cancer in the Chicago area. Examples of what they do include mobile mammograms, educating the public about prevention and careand advocating at the state level – all to promote health equity. I imagine a big part of this advocacy is for additional funding, clearly needed if similar programs are to be developed in other areas as well. It’s a huge problem, but maybe solvable at the local level, with Equal Hope as an example.
There are so many ways to not “waste our cancer.” Trials, education, advocacy and support are just a few examples.And contributing to this blog. I am still trying to figure out if I continue tospread my efforts or focus more fully on one area. Whatever the answer is for each of us, the fact remains that we are, unfortunately, a big group. Which also means that we, fortunately, have the numbers to make a difference. I know we will use our strength in numbers to continue to do what we can not to “waste our cancer” … one cancer fighter at a time.
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