I find that this title is the one that keeps coming back to me. Why? Because I have said on numerous occasions that once I was diagnosed I went “through the looking glass” to the other side and no matter how much my life may start to look like my old life from the outside, I know with undeniable clarity, it is different. NOTHING will EVER look, feel, or seem the same to me. I am on the “other side” for good. The funny thing is, this “place” is kinder, more relaxing, and a place where I no longer take anything for granted. It is a place of gratitude and dare I say, happiness.
My name is Donna-Lee Lista, I am a 4 1/2 year Lung Cancer Survivor. Since my diagnosis, I have become an advocate and supporter of lung cancer research, both through private and government funding. I am the PA contact for The Lung Cancer Foundation of America, a fairly new grassroots organization, which works on securing private funding for lung cancer research. They have already given out 2 research grants totaling 125,000.00 in the short time the organization has been in existence. The Lung Cancer Alliance, is a well-respected national organization that has been around a while which focuses on getting government funding for research. Right now they are working diligently to get the Lung Cancer Mortality Act passed into law. I have lobbied on behalf of this bill to my PA senators and congressmen successfully getting most in my jurisdiction to sign on in support of this bill.
I now have joined forces with PENN medicine to help establish a patient Lung Cancer Advocacy program in the hopes of helping patients get the support they need, while at the same time helping doctors continue their research.
Welcome to Through the Looking Glass….a blog by Donna-Lee Lista
Wow! When the idea of blogging was first proposed to me, I thought it would be therapeutic and maybe I could share insight that would help other lung cancer survivors. Coincidentally, it is also the week before my 4 ½ year scan, and this will keep my mind occupied a little bit. I am starting to get nervous. I am so close, what if my reprieve is over? I can actually see the finish, but what if dumb luck intervenes again, my shoelace comes untied, and I trip and it comes back??? You know, the final mile to the 5 year marker, what I envision as the “bells and whistles stop”. By the way, what do they do when you get to five years, I wondered? Does my doctor go out in the hall and ring a bell and yell, “we got another one”? Hmmmm, hopefully I’ll find out. I just know I live my life in six month increments and it gets really hard when I am seven days out from “S” (scan) Day.
I guess I should back up first. My name is Donna-Lee Lista; I am a 4 ½ year lung cancer survivor. My cancer was an incidental find, no obvious symptoms, stage ll. No, I never smoked, (I know that is ALWAYS the first question), but it shouldn’t matter if I did. When you find out someone has colon cancer, do people ask, “did you eat a fatty diet, drink a lot of alcohol, or not get your recommended amount of fiber”? Were you ever overweight”? NO of course not. You are truly sympathetic to that person. So, not only do Lung Cancer Survivors had to live with the fear that they have the most deadly cancer, (without very good long term survivor odds), but that people will judge them.
If given a choice, and I truly, truly, don’t mean to sound flippant or disrespectful here, but I can think of many other cancers I would more proudly lay claim to than lung. Pretty color ribbons, and pretty color accessories and even bread bags (on generic brand bread-mind you) in the grocery store that display the pretty colors saying that,” 5 cents from each loaf goes to finding a cure”. Don’t get me wrong; I think it is wonderful that a support network like that exists for ANY cancer. It is just hard sometimes when Lung Cancer feels like the ugly step sister, and we don’t have that universal understanding and sympathy and more importantly financial support. Why not at least let us have the “generic brand” bread support? It’s not like we expect the Pepperidge Farm or Wonder Bread endorsement.
I didn’t do anything to deserve this cancer either. My family wants me around for the graduations, weddings and all other significant life events too. I just have to believe everything happens for a reason. In the back of my mind, I never know if little Ms. lung cancer cells are just waiting for me to become complacent, so they can spring it on me again, and rob me of all these future dreams. Like Ms. Pac Man coming back onto the screen, just when you think you ate all the dots.
So what do I do? Well, I never have been, or will be, a quitter. I have been referred to as a tough gal – or broad – depending what part of the country I have lived in, which it turns out, has been my saving grace. I figure I can finally put my verbal strengths and headstrong personality to use for the greater good. I stand up for my fellow lung cancer patients, who aren’t here or don’t have the strength to fight not only this cancer, but the stigma.
I have made my voice heard in the halls of the U.S. Senate and the U.S. Congress on behalf of Lung Cancer Funding. I have attended medical conferences, and learned all I can so that I can help. I have unabashedly told my story and asked for money in front of groups of strangers and celebrities at fund raisers, hoping they will give generously to “get our party started” and you know what, I feel like this is why it happened to me.
Maybe everything in my life was leading up to this? I am the person that can help lung cancer victims stand up and say, ”we are just as important as everyone else and we demand our share of the research dollar pie!” God knows, I keep telling myself that so that I can persevere. It is what I must believe. I WILL keep defying the odds if I make myself valuable to the universe and mankind. At least that is what I constantly tell myself in the wee hours of the morning 7 days before my scan when, I suddenly wake up without my armor on, and I feel so afraid.