Thursday, April 29, 2010

MRIs: We Hold Our Breaths

I have a bit of time so I'm going to write this one up. I started the year with a few entries about the things that I had not revealed that we as brain tumor/cancer patients go through that others don't really understand. With my next MRI looming on the horizon on Monday, I thought this was a good opportunity to reveal the uncertainty we go through when the MRI is within sight.

Even when we are almost certain that everything is fine and nothing has changed and we'll get a good report, there is always that lingering feeling in our minds that things are going too well. That this MRI is going to slap us across the face and throw our worlds back into turmoil. A lot of us have fought the cycle for 5, 10, 15 years and each time we tell ourselves we have nothing to worry about but that thought still works its way in to our subconscious..."what if it's not fine"? While some of us never fully get used to our new normal and the limitations we now have, some of us have accepted and learned to thrive with that new normal. However, that one MRI that shows something wrong again can throw us back into a place we are not ready to be back in.

I'll be the first to admit that, while the time it starts varies, I hit that period of time where just about the only thing on my mind that I can focus on is the results of my MRI. The days leading up to it is full of uncertainty thinking about all the little things that occurred since your last MRI and whether they could be indications of regrowth. Often we feel like we have to put life on hold for days, weeks, or even longer prior to the MRI. This particular MRI has done just that to me. We have put off putting the final arrangements on our trip until the results from the MRI are in. All just in case something isn't right and we have to move the trip around to accommodate treatments or specialist visits.

While those around us can move on with their lives once the surgeries and treatments are "done", we always have that lingering in our mind that it can all change with just one MRI. It just takes one cell to make the mutation and cause us to enter the world of uncertainty again.

I think one of the most torturous things doctors do is to wait weeks to give the results of tests such as these. While they might not be concerned, it's the patients that sit around wondering, "Is there something wrong", "am I worrying over nothing", "why aren't they calling". It's the very reason I've gone out of my way to ask a lot of questions of the NeuroSurgeons and Neurologists and to very carefully compare the written report to my MRI so that I can get a good understanding of what to look for when comparing my MRIs and thus, be able to at least partially calm these feelings before I get that call. I never fully ease until I get the official results but at least I'm prepared to the best of my abilities for what might be said when I do.

Whether it is a kicking in of our "Fight or Flight" response, a coping mechanism in case the worst is determined, or an unnatural feeling that things just aren't going our way but it's something we go through and often silently fight so we don't concern those around us. While we all cope with these feelings in our own ways, keep this in the back of your mind when you know that an MRI is coming up for someone fighting a brain tumor/cancer. Follow their lead. Making light of the situation when the person is genuinely concerned about it, can cause them to feel like no one cares. On the other hand, being overly concerned about it when the person is not outwardly showing any concern, can cause them to have panics about it they shouldn't. No two MRIs are handled the same way just as no two people are alike. :)

For those of you that know me, you can guess which method I take. Let me do the worrying about it and don't get overly concerned about it. It's my natural tendency to worry more about others than myself so let me worry over the MRI in my own way. Remember that the smile on my face is sometimes just a facade that is hiding my true feelings but if you reveal that, it could break.

Huggles all and shall Monday hurry up and get here!!

1 comment:

  1. Amy,

    Thank you for writing this. You really opened my eyes to something in my life through sharing your life with us.

    While it wasn't cancer, I can relate to putting your life on hold waiting for medical results. Unfortunately, I put my life on hold for decades while waiting for that one test result I was in fear of receiving. You described the "Fight or Flight" feeling so well - I may borrow your words some day. Your advice about how to follow a patients lead is "spot on" and it has helped me to pinpoint some of the reasons I have suffered from panic attacks since I was 12 years old.

    My friend, you are in my thoughts and prayers. Waiting to follow your lead.