Before I got lung cancer, I was passionate about grant writing for K12 education and running my dogs in agility. As a lung cancer patient, I am very passionate about the following five things…
Advocating for funding to support research
Anyone who knows me or reads much of what I write knows that I am absolutely consumed with trying to get more money for lung cancer research. Not only do I attempt to fundraise for various lung cancer-related organizations, but I also write to my state and federal legislators on a frequent basis. I always request funding in amounts as significant as the death rate from lung cancer demands.
Once you are diagnosed with cancer, you’ll start hearing all kinds of things. Many of them are simply not true. Let’s take a look at a few of the myths that surround cancer.
Go ahead…eat the sugar (in moderation)
One that you’ll hear most often is that you have to give up sugar when you get cancer. “Sugar feeds cancer,” they say. Well, it is true that all of our cells, including cancer cells, need and use sugar (glucose) for energy. However, just not eating sugar does not deprive your body of the blood sugar it requires to survive.
I recently saw someone ask how important it is to have a connection with their surgeon. It got me to thinking about it. My thoughts were a little different than those of most respondents. I’m interested to hear what you guys think.
It depends on the patient
My response was, basically, “It depends.” I think it depends on your personality and your needs as a patient and I also think it matters how long the relationship is likely to be.
I just read a draft of a blog post I wrote awhile back and the old children’s song we used to sing in church came to my mind, “There’s joy, joy, joy, joy, down in my heart, down in my heart, there’s joy, joy, joy, joy down in my heart, today!” I don’t know about you, but that little ditty is now going through my mind, over and over again. And, it is making me smile!! And, sing! Out loud! Loud! (My husband is going to wake up and wonder what in the world has happened to his wife!!)
When I was diagnosed with lung cancer, the chances that a late-stage lung cancer patient would live five years was merely 4%. In fact, the American Lung Association, even today, gives the following survival rates:
“The five-year survival rate for lung cancer is 55 percent for cases detected when the disease is still localized (within the lungs). However, only 16 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4 percent.”1
I remember the days following my diagnosis as if they were yesterday. I was told I might not have very many more days here on earth, so I decided I better enjoy and make the most of the days I had. And, even though my initial prognosis was only four months, I somehow decided from the very beginning that I was going to try to bring hope to others with this disease.
Don’t let the diagnosis steal your joy
When my mom, husband and I showed up for my first chemo treatment, I wore a t-shirt that said, “It’s about the journey” and that’s the attitude I have tried to adopt. I asked my husband to video my first chemo treatment. I wanted to post it online to document the fact that a dire cancer diagnosis doesn’t have to be scary, doesn’t have to steal your joy.
Way too many of us find that we can no longer continue to work at an 8-5 job after we are diagnosed with cancer. Besides the challenges of having to miss work all of the time to go to doctor’s appointments and to have regular scans and infusions, many of us simply no longer feel good enough to be able to go to work every day.
For me, deciding to quit working was difficult. I didn’t have quite enough time in to receive my full social security benefits and I didn’t have quite enough time in to get my full teacher retirement benefits either. So, when I quit working, our income took a major hit.
No money meant a real lifestyle change. I know I am not the only person who has faced this particular challenge.
I attended a LUNGevity Lunch and Learn meeting yesterday. During the Survivor Stories session, a man I will call Jack began telling his story. He was diagnosed with advanced small cell lung cancer a year or two ago. His oncologist told him that he would likely live for 2 to 4 months if he did no treatments and that he would likely live 6 to 8 months if he underwent treatment.
Jack is a relatively young man, likely in his 50s, and wasn’t quite ready to throw in the towel on life. While undergoing traditional treatments, he began researching the use of medical marijuana. He wanted to find a cure for his cancer more than he wanted to find a way to control his side effects, the use we hear of most frequently in relation to medical marijuana.
I have two dogs. One white. One black. One female. One male. As different from one another as night and day. But, I consider them both lifesavers.
Not compromising for cancer
When I was diagnosed with stage IV lung cancer, my oncologist asked me if I had any questions. I said, “Yes, can I continue to play agility with my dogs?” He was dumbfounded. I think he had never gotten such a question from someone who had just received what could have been (and he thought was) a death sentence.
Back in the day, when it was suspected that we had cancer, we were sent for a biopsy. The cells were studied to determine if we had cancer and what kind of cancer we were facing. And, we never had another biopsy.
Rethinking how we approach treatment
But, we need to rethink that in today’s world. Dr. Fred Ashbury, Adjunct Professor at Dalla Lana School of Public Health, University of Toronto (along with many other credentials), explained in a recent webcast why we should always insist on new biopsies when our tumors begin to grow or spread.1