Why My Thyroid Cancer Journey Makes Me Feel Like I’m in a Maze

Imagine you’re inside a maze, walking through twists and turns along the perimeter with no end in sight. Suddenly, you see a clearing ahead and continue down the path — only to find yourself stuck in a dead end. This wrong turn sets you back to where you started from.

Usually, there is an expected resolution after the height of an ordeal, especially with most thyroid cancer cases. According to the American Cancer Society, “most thyroid cancers can be cured, especially if they have not spread to distant parts of the body.”

But this isn’t the case for me at all.

So it is especially complicated to answer a simple question such as, “How are you feeling?” because the assumption is that I must be “cured” and no longer dealing with side effects from my treatment. There’s no resolution in this situation. I’m just hanging in there. I’m still dealing with painful side effects and waiting for my doctors to tell me that I’m cancer free. It’s the same old.

It’s always been difficult for others to understand my experience because it doesn’t fit the mold of a typical cancer experience — let alone the typical thyroid cancer experience. For one thing, you wouldn’t know just by looking at me that I’ve been living with thyroid cancer for most of my life. Unlike many other thyroid cancer patients, the first line of treatment didn’t cure me because my cancer cells don’t absorb radioactive iodine. Alternatively, cancerous lymph nodes can be removed or destroyed with alcohol injections, but the problem is that microscopic cancer cells get left behind — and grow. So, not only am I living with cancer cells in my body, but I’m also living with an incredible amount of uncertainty — about the present and future.

As you would imagine, I want to know the details of the “plan” to manage my case and what the necessary steps will be (in the event that we find something) just as much as the other people who care about me! Most people want a clear-cut answer from me, but that’s something my doctors aren’t even able to give me and I’m the patient!

Imagine knowing you still have a detectable amount of cancer but not knowing the extent. Based on my lab test results, I have X amount of thyroid cancer in my neck, but I can’t tell you where it is or if it is only confined to my neck. One might assume that it must “not be so bad” if we aren’t looking too hard to find it, but the reality is that scans that do not use iodine are limited in their ability to show “small” things and have a significant amount of radiation. And so we wait.

Much like the maze analogy, my battle with thyroid cancer is a long, frustrating ordeal without a resolution in sight. To put it simply, my doctors are kind of winging this, too. Not having the answers I desperately need has taught me patience and put things in an entirely different perspective — it’s better to be able to live my life without having to be constantly poked or prodded.

But there are times when I get worried or scared, so I try to downplay it because I know there are others in more challenging situations. I can’t dwell on this too much, and most of the time, thyroid cancer takes a backseat to my other problems. I know I will probably make it to my 99th birthday, but in the back of my mind, the worries are still there.

I’m not at all upset or offended by the curiosity or concern of others, but I hope people will realize that so many of us struggle to get answers from our doctors and there is so much beyond anyone’s control. Maybe my “usual” means I’m still dealing with the same things — the situation hasn’t changed much.

Taking this day by day is a cautious approach that will avoid any costly missteps. Remember, no one ever made it out of a maze by rushing through it.

Lead photo source: Thinkstock Images

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