Carcinoid Chronicles

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I had a doctor’s appointment today for a routine physical and for about the thousandth time I had to explain that I had NET Cancer, what it is, where it is, the fact that it could be anywhere in the endocrine system and what my symptoms tend to be. It always surprises me that I have to tell and, on some level educate nurses and in some cases doctors about a form of cancer that they have never even heard of, much less know how to treat. Thank God I have my regular Oncologist who knows about Neuroendocrine Tumor Cancer. It became clear, yet again that NET cancer needs awareness and fast.

The next thing I always seem to hear is “You seem so healthy though, you don’t look sick.” I guess you could consider that a compliment. On the outside, I look like everyone else: happy, healthy and full of life. Truth be told there are a lot of days that I feel exactly like everyone else. But it’s those days that I am tired for no reason, have stomach pains, and have to eat saltines and ginger ale all day from being nauseous. That’s the least of which I can talk about without ruining your dinner. On the outside, yes, I look normal, but there are days that I feel any and everything but “normal.”

See, the “Fight” is so much more than physical. It’s the mental that gets you through those days when you just don’t feel good enough to get out of the bed. Telling yourself: “I’ve got to keep going. I’ve got to get out of bed, there are things to do, places to go, bills to pay and a household to take care of” as soon as you open your eyes some morning can be really tough. But that is where the Fight comes in. It’s not always just about eating right, exercising, taking your medicines and going for treatment. The “Fight” is about keeping a positive mind, day in, day out, no matter how you feel, as long as you aren’t putting you or your health in danger. Knowing when to relax is also part of the “fight,” which can be both mental and physical. Going for a walk, listening to music, writing, going to a movie or the bookstore are just a few things that help me to keep my mind off of my bad days. But everyone is different.

As she finished up the examination, the nurse asked me “So, are you almost done with your treatments?” I smiled and told her, “No, I’m in this for the long haul.” “So, that means your going to live with this for the rest of your life” She said? I told her “No,” and that by God’s grace I’ll be N.E.D. (No Evidence of Disease) sooner than later. I explained to her that since the tumors were slow growing, and took years to get big enough for them to affect my health, that it’s going to be the same in getting rid of them. I explained that my treatments are done by injections each month and not chemotherapy or radiation. It’s not going to happen tomorrow, but I am hopeful that eventually, I will hear that I’ve achieved NED and I’m cancer free. Positivity is key and believing that you will see the end of cancer takes more energy and believing then it does to deal with the actual symptoms some days. Reading stories about Net Zebra’s (that’s what we call ourselves) and their success stories make it so much easier, and gives me hope. Knowing that NED is possible is basically what keeps me going. If I had to feel like there was no end, then I think it would be a much harder fight. I’d be tempted to give up and I can’t do that. There are people, friends, and family, particularly nieces, nephews, and God daughters to keep going for. Being strong is not an option. “Strong Mind, Strong Body” as my best guy friend would say.

My hope is that one day when I tell nurses and doctors that I am a NET Cancer patient, I won’t have to spend 15-20 minutes on a crash course about it. I’m hoping that one day I will hear “Oh, yeah, I’ve heard about that” and NET cancer won’t be so rare. There are many professionals and those in the medical practice who are educated in Neuroendocrine Tumor or Carcinoid Cancer and are doing their part to make sure that awareness gets out there. I can’t tell you how grateful I am. I am still trying to do my part in sharing my story and testimony. At the end of the day, I want to inspire people to keep going, remain strong and stay positive in whatever you do. Whatever you are going through, whether it’s related to cancer or not, you must always keep a positive outlook. Otherwise, it will be so much harder to get through it. That has, without a doubt been one of the greatest lessons in life that I have learned throughout my journey.

One thought on “Carcinoid Chronicles

  1. Ameena k.g says:

    This was such a much needed read for me to be honest. I’m so glad I came across this post so early in morning, a great start..
    you have an amazing spirit and courage. And I look to the day you become Cancer Free ❤️

    Like

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