The MCA BlogConnecting with others one story at a time
I’d like to take a moment to thank Jill Leavitt, the Mesothelioma Cancer Alliance’s Advocate of the Month for February. Jill has been incredibly active and visible in our Facebook community and continues to help spread the message of the MCA, while lending her support and knowledge to others affected by cancer. Beneath is an interview with Jill about her own experience with cancer and how that has shaped her way of life.
Has cancer affected you in some way? Tell us about your experience.
Every time I turn around, I hear of another person diagnosed with cancer. I always considered that with the increased incidence of cancer that it would only be a matter of time before it affected someone that I love. Never once did the thought of my Father being diagnosed come to my mind. He was an 85-year-old healthy and active husband, father, and grandfather. My father often complained of being short of breath and it was common for him to have a cough. Never a smoker, I assumed these symptoms to be that of an aging man who tried to do too much. I would just dismiss it as such and encourage him to pace himself. A man with a huge appetite was suddenly never hungry anymore. The shortness of breath got to a point that it was affecting his ability to complete every day tasks, and so x-rays were ordered last spring 2011. These x-rays showed fluid on my Father’s lungs. Over the summer, his health continued to decline and the last week of August he was given thoracentesis to remove the fluid in his lungs. Using a long needle, a surgeon took two liters of fluid off. One week later, he was struggling to breathe and they repeated this painful procedure. That day they removed four liters of fluid. The surgeon met with us and said that she suspected cancer.
Hearing that word literally made my blood pressure drop so that I nearly fainted. None of the tests performed on the fluid could tell the doctors what was causing it to build up. We soon traveled three hours each way to meet with a pulmonologist who then sent us to a thoracic surgeon. The questions they asked my father concerned me very much and for the first time, cancer seemed a real possibility. When they asked about his work history I knew they suspected mesothelioma. I shared this with my Father and he just insisted that there was no way he could have that disease. He had been retired since 1987!
I knew nothing about mesothelioma. Who knew that this disease had laid still and dormant in my dear Father’s body for all of these years? It was something that none of us understood. On October 5th, the surgeon took a biopsy of my Father’s pleura, the lining outside of his lung. It was between this lining and his lung that the fluid continued to build up. This was no minor surgery and he had a drain in his lung as big around as a garden hose when he woke up. I brought my Father back home on October 10, Columbus Day. On the evening of October 11, the surgeon called to tell me that it was indeed mesothelioma. Like a silver bullet through my head, all of his symptoms suddenly made sense to me.
My Dad had not just been pale these last few years, his skin was actually gray. Cancer. Considering his age, surgery was not an option for my Father.He did however want to undergo chemotherapy. This diagnosis was something that he just did not want to accept. He would show everyone what a fight he had inside and the will he had to live. My Father responded well to the treatments and was hopeful. The second week of December, my father developed a cough that was incessant. On the sixteenth day of the month he was admitted to the local hospital and diagnosed with pneumonia. Eleven days later he succumbed to his horrible disease of mesothelioma. Cancer of his pleura took his life. It was a short battle, but a courageous one nonetheless. It was a roller coaster of emotions for our family and we have been left with broken hearts, members of a club we never asked to join.
How has this shaped you as the person you are today?
Today I struggle with feelings of bitterness and resentment. The difference with this cancer is I actually have “someone” to blame. The production of asbestos was continued well after knowledge of its dangers. I am still angry with my Father becoming ill as a result of his hard work as an electrician. On a positive note, I am much more learned than I was only six months ago. I used every resource I could to inform myself about this disease, treatments, and asbestos. Suddenly I knew more about mesothelioma and its causes than 98 percent of my community. I was left with even more respect for my Father than I had already possessed. His love of life and his longing to live has stayed with me. I remind myself of his appreciation for all things and try not to take anything for granted. I am much more conscious of my health. I have learned to listen to my body and not dismiss signs of my health or my family’s health declining. I am fearful for my Mother, my brother and I after our possible exposure to asbestos through my Father. To me, mesothelioma is no longer just the subject of law firms’ television commercials.
What are the two biggest things you learned in your experience with cancer?
As cliché as it may be, I learned that it really is the little things. My fondest memories of my Father are the simple moments we shared. Sitting at the table drinking tea or sharing a jar of pickled beets are now the things I love to recall.
I have learned that you need to be your own advocate, or ask someone to help you if you cannot be. I acted as an advocate for my Father from day one of him becoming ill. I armed myself with information before every doctor’s appointment. Do not be afraid to ask questions. It is not a matter of questioning authority and fear of insulting a doctor it is your responsibility as a consumer of health care. You owe it to yourself to leave an appointment feeling satisfied with your questions being answered and things being explained to you in a way you understand.
What was your motivation to become the MCA Advocate of the Month?
Because mesothelioma is a rare disease, I feel the need to help inform people. I don’t want all the research that I did for my Father to go to waste now. If I can help someone who is in a similar situation it gives me a feeling of empowerment somehow. As helpless as I felt with my situation, I would like to aid someone in overcoming that feeling.
If you could say one thing to the world about cancer or mesothelioma specifically, what would it be?
Cancer does not discriminate. Any age, gender, or background can be affected anytime. Never take for granted or feel that you are somehow immune.Empower yourself with knowledge if you or a loved one is diagnosed.
Is there anything else you would like to say to the MCA community?
I would like to say that you are not alone in this. There are so many resources today with our access to the Internet. Please educate yourselves and share your knowledge when you can. Reach out to each other and support each other. I find this to be a loving community of people willing to share each other’s burdens. Always have faith and hope, it will help get you through your darkest days. I never lost hope for my Father; right up to the last breath he took. My Father never lost his hope or faith and that is my greatest inspiration, I hope it can be yours too.
Resources for Mesothelioma Patients and Their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center