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9.16.2011

The Limbo of Living with a Cancer Diagnosis



You Can't Pretend You Don't Have Cancer.

I have not blogged in quite a while. Not only has the chaos of life gotten in my way, but sadly, there is nothing new to tell. What the made-for-TV Hallmark movies and Grey’s Anatomy do not tell you about cancer is that it involves a lot of waiting.

After the RAI scan, it is a 6 month wait until you find out your cancer status. So I will not know whether I am “cancer free” or not until January. But as I already mentioned, there really is no way to become cancer free. It is always there in the back of your mind. I’m often completely absorbed in some other activity and then some “Stand Up to Cancer” commercial comes on or I spot a ribbon on someone’s car or someone asks me “How are you feeling?” instead of “How are you doing? and BAM! I’m brought back into a world where I am sick and people feel bad for me.

I’m sure other THYCA people or even people experiencing other cancers have these normality-sucking moments. I’m sure a lot of them also react to these moments by distracting themselves or changing the subject right away. I am definitely guilty of trying to hide from this disease or pretend it hasn’t happened or live my life “normally,” and many people will say this is healthy. But it isn’t right. It’s the exact same reality void that kept people in my family from telling me that getting this disease was a possibility.

I read an article today that said that U.S. THYCA diagnoses are up this year by 3,350 or almost 7.5% for a total of 48, 020 diagnoses and 1740 deaths. Here’s where I climb a tall horse and deliver a small sermon—again. 1740 is not a small number. Thyroid cancer is a big deal. If it is not caught early on death is a possibility, even a likelihood. I am not a fan of hierarchies, and this is no exception. September is supposed to be THYCA Awareness Month, but there are no events in the DFW area, a major metroplex.

Can You Make Meaning of Cancer?

A month ago I participated in the American Diabetes Association Tour de Cure and it was amazing! The Dallas Tour de Cure event raised more than a quarter of a million dollars and the events nationwide raised $18 million. I’m not going to play the “which is the more serious disease” game. Living with any disease sucks. All illnesses should have the funding for progressive research and awareness. So where is our bike ride? Marathon? Gathering of more than two people??

All I have found so far is the “Ten Tips” list on the Thyca site and a bunch of links for “free” flyers. So at this point my options seem to be limited to grabbing my mom and a few friends and harassing people at malls and college campuses with the flyers we printed at our own expense. Is this really the best we can do??

I’m sure it took a lot of years to get the Tour de Cure to where it is now, so really we just need some kind of starting point. I guess I need to do some more research on this, since my fundraising experience is limited to Girl Scout cookies and yearbooks. If anyone is interested in starting a fundraising event in the DFW area or if anyone has started events similar to this and has advice, please contact me!

If you have gotten through the horrors of the surgery and hypothyroidism and the scan, you may be tempted to return to the life you knew before. There is no point in dwelling on something you have no control over. No one’s life should be defined by an illness. But I know I am not alone in feeling that something more should come from this experience. That at the very least, my affliction should benefit someone else. That there should be some purpose to all of this. Something a bit more substantial than flyers and Facebook updates.

The Miracle of Synthroid.

Now that I am on Synthroid, I feel fine. The only place I feel different physically is my neck/throat area. My voice is a bit different. I don’t have the vocal range I used to and sometimes my tone or pronunciation comes out in a way I did not intend, like a poor sight-reading. I have sore throats that don’t appear to be connected to any other illness like a cold or flu. And every once in a while that strange choking sensation comes back and I have to convince myself I am still breathing. It simply feels like my trachea is contracting, but it is not painful, rarely happens, and goes away quickly. Another person with Thyca described it accurately as “an uncomfortable pull.”

Remembering to take the pill is easier than I thought it would be, and I am quite forgetful. Usually if I do not take it, I remember in a few hours once I start wondering why I feel so tired.

A tip for taking Synthroid: The bottle says to take in the morning and not eat for half an hour. If you are like me and do not like to skip breakfast and have to run out the door in the mornings, you might want to switch to taking it at night. The consumption of food, especially milk, orange juice or anything with calcium will block your body’s absorption of Synthroid. If you take calcium pills or a multivitamin, take it at a different time.

Other than taking these pills, the only cancer-related activity I am involved in is waiting. But I hope, with some help, to find better ways to raise awareness. Please help by telling everyone you know to “check your neck!”

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