Fighting the Uncertainty of Cancer With Self-Education
A seven-year mesothelioma survivor encourages patients with cancer to be their own advocate.
BY Emily Ward
PUBLISHED October 11, 2019
I'll never forget the overwhelming rush of feelings I had when I was first told I had cancer. For some, the feeling of being overwhelmed and lost can fade quickly. For others, it can take months or even years to pass.
I worked as a registered nurse for 43 years, and I knew next to nothing about pleural mesothelioma when my doctor began to explain my diagnosis. It wasn’t until I took the initiative to become my own advocate in fighting this disease that the overwhelming feeling began to subside.
About 3,000 cases of mesothelioma are diagnosed each year in the United States. When my doctor began to describe what this cancer is and how poor my prognosis was, I knew the real challenge was only beginning.
In order to get a grasp of my situation, I had to spend a lot of time doing my own research. I had to become an advocate for my own health as most doctors in Maine had never heard of this disease except for the legal commercials on TV. Through research, I found my way to Brigham and Women's Hospital in Boston. It was there that I met the late Dr. David Sugarbaker, who performed my six-hour surgery to remove as much tumor growth as possible. The most difficult thing for me after my surgery wasn't the pain caused by having the lining of my lung removed, but instead trying to keep my head clear through the fog of pain medications my doctors prescribed me while sedated.
Many patients will fall back to the suggestions of the first doctor they meet when it comes to how they should fight their cancer. I knew I didn't want to sacrifice my quality of life for more time on this earth. I had to be the one to push for a lower dose on my pain medications.
In a similar situation a few years later, after my third round of chemotherapy began to take a heavy toll, I had to speak up and ultimately decided to stop treatment. Thanks to the continued efforts and honest opinion of my current oncologist, Dr. David Jackman, I decided to begin treatment again, this time with the experimental immunotherapy drug Keytruda.
These drugs, while experimental in some cancers, don't have the same harsh impact on my body that I was experiencing with chemotherapy. I have had monthly Keytruda infusions at Dana-Farber Cancer Institute since April, and I am happy to say that I received the results from my first scan in July. The scan showed almost no change, which is a good thing.
For a disease that doesn’t typically see patients living for more than a year, I am beyond blessed to say that I recently celebrated seven years as a mesothelioma survivor. I wholeheartedly believe that I would not have made it this long without the research I did. Of course, I also know that I have benefited from the support offered by my brothers and best friend, Nora, at every stage along this journey.
Patients need to ensure they understand and trust everything they are being fed by their health care team. It is every patient's responsibility to become self-educated on what they can do to help beat their cancer, whether that's making the decision to travel further away to receive treatment from a specialist or seeking the guidance of an outside advocacy group. Ultimately, patients should feel comfortable enough to choose and determine which options are right for them.
I don't see the point in being angry or regretful following my diagnosis. Living is a mindset. I don't want or plan to live forever, but I want to live life happily and enjoy every day that I have because I'm not promised tomorrow.