Bard, Sullivan | Surviving Mesothelioma

Bard, Sullivan

YOUR PROGNOSIS: IMPROVE IT BY LEARNING AND LAUGHING

Although I have never had to face cancer, I know what it is to live with a life-threatening illness. I was born with a medical condition known as third-degree (complete) heartblock. Basically, my heart cannot receive the message from my brain telling it to beat. When I was sixteen days old I underwent the first of many heart surgeries and I received my first pacemaker. Now, my cardiologist wants me to undergo more surgery and get another pacemaker. This will be my eighth one.

I am a college freshman but many people though I would never go to college. That is because when I was three, I suffered cerebral hemorrhaging because of a drug overdose during one of my many hospital stays. When growing up, I would sometimes be in the hospital for months. That brain injury made me lose my hearing and I had to get a hearing aid and learn to speak all over again. From then on, things were often hard for me, especially learning, and I would have special teachers who understood that having a brain injury doesn’t mean you are dumb.

When I was small my prognosis was poor. Because my future was doubtful, I got to be a Make-A-Wish child and went to Disney World. This was what started me on my path to where I am today. I loved Disney World so much I wanted to be a part of the magic. I dream of becoming an animator and am studying art and animation in college!

But needing a pacemaker to live has only been one of my medical issues. I was also born with brittle heart valves that broke, putting me in cardiac arrest. I needed open-heart surgery more than once to repair those valves and now I also have an artificial (metal) heart valve. Because of that, I take a medicine called coumadin and I always will. But if my dose is off, it can be bad: too much coumadin, and I can start to bleed (once I bled for thirteen hours); too little, and I can have another clot in my heart. An infected clot in your heart like that is called endocarditis and I had this condition three times. One time was that time when I was overdosed (with the drug urokinase) and ended up bleeding into my brain (hemorrhage). Urokinase was supposed to break apart the clot but they gave me too much. The time before that, they had done open-heart surgery to remove a similar clot.

So, now you know a little about me, and why I can understand having doctors tell you bad things about your health. If I had cancer prognosis, I would follow certain steps to try to stay safe and unharmed just like I have to do now, being a heart patient. For me, of course, there might be difficulty doing good research to find the right treatment, so I would have to rely on others to help me do that, like my mom and dad, who were the ones who had to figure out what choices to make about my health when I was growing up.

The key thing is that I now understand just how important research is. I know this not only from being in college but also from reading about Mr. James “Rhio” O’Connor. Research was his approach. It was his chief weapon, you might say. His type of cancer was called mesothelioma. You can read about it at the website www.survivingmesothelioma.com

Mr. O’Connor probably heard the saying, “Knowledge is Power.” My mother would tell me this because she believes in education and that taught me to believe in it, too. So here is what I would do to fight cancer: I would do what James “Rhio” O’Connor did when he was diagnosed with the problem, except perhaps for a few minor changes. First, like him, I would take my time finding out about my specific type of cancer, and about the types of treatment already being used for it. Then I would study each treatment carefully, looking at the side effects (good and bad) of each option. My researching would start on the Internet. I have learned there are many resources there that have good information. But the Internet can also have inaccurate information I might not be able to fully trust (you have to check your sources) so then books would be my next tool for research, once I had checked all the Internet sites that I thought were reliable.

Once I had chosen a treatment that I liked, I would then try to figure out how to get that specific treatment or those types of treatments to fight my cancer. Some treatments might cost a lot or only be available some place I didn’t live, so I might have to move. Also, there would likely be more than one kind of treatment for me to choose from, so I would pick the one I felt was best for me personally. A different treatment might be better for someone else. This is because everyone’s circumstances are different and you just can’t do what someone else did, necessarily. Big decisions take a lot of research and thinking.

Still, thinking isn’t everything. There is more. There is something important called attitude, which is how you feel about something. A positive attitude can be healing like a medicine. You might call it a self-treatment. My mom once told me about a man named Norman Cousins who watched funny films like the Marx Brothers to help himself get well. She said even if laughing didn’t make you get better, it would certainly make you feel better while you were sick or in the hospital. So I would also do that. I would watch things that make me laugh and smile like The Simpsons and cartoons by Tex Avery. Additionally, I would listen to my favorite music such as soundtracks by composers Danny Elfman or John Williams. Finally, I would spend time with people who love me.

Before closing, I would like to add several more thoughts. One thought is about time. When researching treatments, I would not want to take so long to make my decision that I couldn’t get well. I would start a treatment soon, before the cancer had a chance to get worse. This is why it is good to have people like Mr. O’Connor, who did research already and shared what they learned. That is how people help each other.

Another thought I would like to share is about flexibility. If I started a treatment that turned out to be unsafe for me (for instance, suffering side-effects from a medication that might do damage to my body, such as blood clots), I would want to stay open to changing treatments. I am never too good at remembering scientific information, but I would certainly know if one treatment or another was not working out and not making me better. In that case, I would look into other choices: maybe surgery, radiation, or even chemotherapy. Of course, to make these choices, I would have to be as informed as I can, and – again – that is where research comes into the picture.

Informed decisions also require a willingness to talk to your doctor. You will need a doctor who is willing to talk to you, too, and one who knows how to listen. If I felt that any of my treatment choices were not working out, I would inform my doctor. We would discuss how to correct the problem. My doctor might have to give me a few tests, perhaps blood tests, to help chose better treatment options. This goes back to having a positive attitude, because when you are ill you will have many medical tests. Some require patience and others, pain. So have a good outlook. Think of your favorite cartoons and laugh.

Finally, I would like to add that sometimes a trip to the doctor brings good news. Remember that. Perhaps you will learn that a treatment is working out. For instance, it might be preventing the cancer from spreading even if it isn’t going away entirely. That gives you the best thing: time. Time is what everybody wants more of. With more time on your hands, you can do more research, become more informed, and laugh and smile a whole lot longer.

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