Being diagnosed with peritoneal mesothelioma at the age of 34 was the most unbelievable and devastating news I could have ever received. All of the statistics were against me. The Internet led me to believe that I had about a year to live. After two HIPEC procedures, and multiple chemotherapy treatments, I am still fighting for life. Throughout this three-year cloud hanging over my life, I have found hope.
On July 1, 2010, I was diagnosed with peritoneal mesothelioma, and after receiving the news I did what most people do: I sobbed. My children were 1 and 6 at the time. Who’s going to raise my children? I thought.
When you receive a tragic prognosis, the first thing you should do is throw yourself the best 24-hour pity party you can. Give yourself permission to cry, scream, weep, sleep, pig out on fattening foods, go into seclusion — whatever you wish — but only for 24 hours.
When your party if over, your new life begins. Once you receive a terminal diagnosis, you are not the same person you were before. The “new you” must put the gloves on and prepare to fight.
After my sob party, I decided I would be as informed as possible about my condition. Like most, I turned to the World Wide Web. That was not a good idea. Although I learned a little about my condition, I also read all of the horrible prognosis reports.
I shared the Internet data with my husband, and he said, “Kasie, those are simply statistics. Those statistics are based on other people, not you. Besides, you’ve already surpassed that outcome data. You’ve been misdiagnosed for the last year and a half, and you’re still here!”
After that realization, I decided to stop reading the grim survival rates and focus on my survival.
Before you begin to fight, you must first arm yourself with the right tools. Get your mind right. It’s extremely hard to develop a positive attitude when possibly facing death, but it’s possible. I decided that although the statistics were horrible, I was going to be the exception.
Hundreds of years ago, there were neither treatments nor hope for people with small pox, chicken pox, measles, polio, etc. Somewhere along the line, there was an exception. Because of that exception, there are now vaccines. You are the exception.
Believing that you are the exception can make the difference between life and death. You must believe that you are the exception and truly believe it. You will be surrounded with people who don’t have your faith. You are the exception.
Once you believe you are the exception, it is imperative that you surround yourself with believers. This means you may lose some friends, family members, etc. The first response you get from others will be pity: “I’m so sorry to hear that.”
In my opinion, people who repeatedly feel sorry for you are not optimistic that you will find hope. “Sorry” is the opposite of hope!
In addition to friends and family members, you must also find a physician who is optimistic. The first oncologist I saw had a waiting area that was dimly lit with halogen lamps and “Amazing Grace” played by bagpipes. This was not a physician with much optimism.
If a physician tells you how much time you have left, get another doctor. No one but God himself knows the hour and time of your departure. When you meet with your physician, greet him or her with a great attitude and let them know you are the exception.
You have the authority over your life. Be bold, and let your caretakers know that pessimism will not be tolerated.
At Cancer Treatment Centers of America, the first physician I met with told me, “There is no cure for your condition. You do know that, right?”
At this point, I had been fighting for two years, and I was well aware of my condition. Her comment infuriated me. I live with mesothelioma every day of my life, and the last thing I needed at this time of desperation was a physician with no optimism.
I shared her comment with my nurse, and her response was, “The doctor just wanted you to know that your condition was serious. Lots of patients are not as informed as you are and have no idea what they’re up against. Although there is no cure, it’s treatable. There is no cure for diabetes or the common cold, but they are treatable.”
There was the optimism I was looking for.
Along the way, I also found great physicians who were eager to help me. They all had a can-do attitude. When I asked about my prognosis, they simply said, “I’m your doctor, not God.” That is the kind of answer you want to hear.
One physician told me that there are people who have been living with mesothelioma for years — more than 20 years, to be exact. Those are the kind of stories you want your physician to share. If your oncologist or patient advocate gives you pamphlets about hospice, run for the hills.
With that being said, dive into some good literature. My literature selection was very diverse. I read the Bible, gossip magazines and a lot of Joel Osteen. A lot of people feel that Joel Osteen is too positive and isn’t realistic. My friend, you need a lot of Joel Osteen. You need someone who is overly optimistic and positive.
I meditated to music daily. My music collection ranged from Yolanda Adams to Beyonce. I stayed away from certain support groups. I was in a very strong place mentally, and I found that some groups were filled with patients and family members who accepted the fact that they were not exceptions.
My faith taught me that I was put here to live and not die. I repeated affirmations to myself daily, hourly, sometimes every minute until I believed them:
Cancer is simply a disease, not who you are. Your body is damaged, but there is nothing wrong with your spirit. Remember, you are bigger than cancer.
You are the exception!