When I break a nail, I go to the salon and have it repaired. When my car breaks down, an auto mechanic is the first person I go to. What do you do when you’re diagnosed with a terminal illness? Who fixes that?
There is no manual or guide to pick up and read. I’ve been a mesothelioma survivor for three years and counting. During that time, I’ve come up with a short list that may serve as a quick guide for some mesothelioma patients.
When I was properly diagnosed in July 2010, I immediately ran to the Internet. Although the Internet hosts tons of information, and can be very helpful, itcan also create an insurmountable amount of fear in the patient. I was terrified, but I had to make sure that I was really diagnosed with peritoneal mesothelioma before undergoing such radical procedures like cytoreductive surgery and HIPEC.
After my initial diagnosis, I wasted no time getting a second opinion. Where do you go for a second opinion? Let’s face it, the Yellow Pages are filled with oncologists, but how many treat peritoneal mesothelioma? Also, I was on a quest to find the best.
This disease is so rare that there are hundreds of oncologists who have never seen the cancer up close and personal, let alone create treatment regimens for it. This was no ordinary cancer, and I was not going to settle for an ordinary, mediocre treatment plan.
When diagnosed with a terminal disease, a sense of urgency is required. Use your resources. Every day there are commercials for MD Anderson Cancer Center, Cancer Treatment Centers of America and others. Call them and refer yourself. Do not wait for someone to do it for you.
Seek local resources like the American Cancer Society. Ask the first physician who diagnosed you to refer you to another specialist. Once you’ve been diagnosed a second time, accept your diagnosis. You can waste an entire year in denial, and getting tests after tests. Within the first year of my diagnosis, I had one HIPEC procedure and several rounds of chemotherapy under my belt.
Mesothelioma doesn’t procrastinate, and it doesn’t wait for you to feel comfortable with your diagnosis. Now that you have accepted your diagnosis, it’s time to rally the troops and prepare for war.
Cancer treatments aren’t for the weak. The surgeries often are invasive, grueling and emotionally exhausting. The chemotherapies change some of the things you take for granted, including your ability to enjoy the foods you love and changes to your physical appearance. They also add 24-hour nausea.
I’m convinced that no person can undergo all of these changes alone. You need to rally the troops for war. On every team there is a weak link. In this case, there is no room for weak links. Lots of people will feel sorry for you when they hear of your diagnosis, and others won’t know what to say. Believe it or not, some people will begin to speak about your illness as it relates to death, and someone they know who died of the same or similar disease. Who wants that person on their team?
Eliminate the negativity and naysayers from your inner circle. You are alive and breathing. No one should be assisting you with funeral plans right now. Your team should be helping
you find the right physicians, preparing meals, creating a sense of normality and feeding you positive thoughts and encouraging words. Make sure the oncologist you select believes in your ability to recover and survive. Oncologists treat cancer every day; it’s their job.
Some days you are better at your job than others. Some days, physicians are not as optimistic as others. When it comes to a mesothelioma diagnosis, some physicians aren’t optimistic at all. None of us have an expiration date stamped on our foreheads. If a physician gives you an expiration date, remove him from your team.
The Bible is filled with thousands of miracles performed by God. Although no one in generations has witnessed people walking on water, and feeding thousands with a few fish, one thing remains the same: God.
God will eternally be the same God. Now is not the time to question your spirituality or hinder your God.
The God who performed miracles in the Bible is still in the miracle-performing business. The first step in receiving a miracle is to believe that you can actually attain one. If you choose not to read the Bible, I encourage you to tap into reading books that are filled with survival stories, testimonials and positivity. Lots of people criticize preacher and television evangelist Joel Osteen for being overly positive, but let’s face it – you need a dose of overly positive when fighting mesothelioma.
Surround yourself with friends, family and people who share your beliefs. People who truly believe that miracles happen, and more importantly, those who believe that you are a living miracle.
If you have a job, keep it as long as you can. Unfortunately, when diagnosed with mesothelioma, thoughts of cancer, death and the unknown can consume your every thought. It’s time to get busy. Find a hobby, read books, enjoy dinner with friends. If you have the time, start sowing seeds of hope in others. Believe it or not, there is always someone who has it worse than you.
Volunteer in your community and help someone else who is less fortunate that yourself. I chose to start a cupcake business. Cancer and chemotherapy won’t keep you down forever, so start filling your good days by helping others and living your dreams.
It’s easy to start thinking of what life will be like without you in it. Don’t focus on the long-term prognosis. Live each day to the fullest. You can only undergo one chemo treatment at a time, so celebrate after you finish each one. It’s a big deal.
I’m in remission now, but I still must follow up with my team of oncologists every 90 days. What do I do with the other 89 days? I spend them living a busy, productive life.
However, I must admit that on day 90, I always remind myself, “Oh yes, although in remission, I’m still fighting!”