Lung Cancer Drives My Passions
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.
So far, my attempts haven't been very successful. Even though the National Institutes of Health gets many billions of dollars every year to dedicate to the various health issues in our nation, they fail to fund lung cancer at a rate indicative of the number of people who suffer from and succumb to the disease. But, you know what? I will keep trying until the day I die to be heard. If enough of us do it, maybe one day in our lifetimes, we will see a change.
Encouraging patients to take ownership of their disease
I see it all of the time. Patients put their trust 100% in their doctor's hands. I don't think that is necessarily a good thing. I think it is vital that patients educate themselves on cancer treatments that are available and be prepared to advocate for themselves with their doctors.
About a year ago, I was faced with a growing tumor that needed to be addressed. After much soul-searching and research, I decided on a treatment plan that was not what my medical oncologist recommended. He wanted me to undergo chemo while waiting on a clinical trial to open up. I decided to have the tumor radiated. Now, I can't know what would have happened if I had followed my doctor's suggestion, but I do know that I no longer have an errant tumor threatening my life. Radiation obliterated it.
The stigma associated with lung cancer is probably nearly as big a killer as the disease itself. The reason I say that is that even doctors all too often refuse to acknowledge that a young nonsmoker exhibiting symptoms that could be associated with lung cancer has the disease. They treat them for everything under the sun except for the disease they have. In the meantime, the tumors are having a heyday and when it is finally diagnosed, the cancer has progressed to stage III or IV.
For me, that is heartbreaking. So, I spend a lot of my online time telling everyone who will listen that if they have a cough that doesn't go away or other symptoms of lung cancer to insist on an X-ray or, more preferably, a low-dose CT scan. Their lives may depend on it. I know far too many people who weren't diagnosed for many months because they didn't fit the false picture of what a lung cancer patient looks like (smoker, old, male).
Giving hope everywhere I can
I can't think of much I enjoy more than passing out hope to others who have lung cancer, especially those who are scared and newly diagnosed. I always want them to know that while lung cancer is a very scary disease, it is no longer the death sentence that stats show it to be and that it was just a few years ago. We have a long way to go before it is where it needs to be, but there are lots of us living life with stage IV cancer these days. Many of us are on drugs (either targeted therapy or immunotherapy) that allow us to live fairly full lives.
I refuse to let cancer control my life. To me, that is giving it a power it does not deserve. I go for treatments. I take the necessary drugs. But, otherwise, I am busy living my life. I always say that cancer is welcome to come along, it just needs to remember its place and not to get too greedy! I may not have my "old normal," the life I lived before I was diagnosed with cancer, but my "new normal" is pretty darn good.
Are you satisfied with your care team?