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    Posted August 2, 2014 by
    mamaleesie
    Location
    By a Lake, Minnesota
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    More from mamaleesie

    Foot, meet Mouth...

     

    …Mouth, meet Foot.

     

    There. The formal introductions are finished and we can get on to why this meeting has been called.

     

    Foot, do you see that woman over there? Yes, her. The one wearing black with cute leopard-print sandals. I’d like to tell you a bit about her. Her name is Lisa and she’s definitely an interesting bird. She’s been through quite a few things over the past five years, yet maintains a ridiculous amount of hope and a seeming single-mindedness toward the happiness of her family.

     

    Lisa was diagnosed with a rare cancer in June 2009. So rare that it took a month to get the results from her excisional biopsy. Now, this girl loves being unique (hence the animal-print shoes), but wasn’t too keen on this method as being the one that may set her apart from the crowd. She had tried for almost a year to get someone to diagnose the lump in her upper abdomen… and was sent home repeatedly, being told she was just fine and that it was simply a lipoma (fatty cyst).

     

    Lisa knew different. While she regularly had ailments and would call herself a mild hypochondriac, Lisa knew that *something* was wrong in there.

     

    Prior to this lump, she had been trying since 2007 to get someone to check out her thyroid. A barrage of tests were done, and the doctor’s always came back with the diagnosis of, “just fine” since her blood work was seemingly ‘normal’.

     

    Fast forward to Fall 2008. Lisa made a dr. appointment with a general practitioner. The dr. sent her for both an ultrasound and CT scan. The results? “Just fine”. Over the next few months, She went to various dr.’s and was basically told she simply needed to lose weight (her charts stated that Lisa was slender everywhere, but her stomach which was markedly “obese”). Lisa felt defeated and became quite depressed. After another five months had passed, she went back to the last surgeon who had ran the January ‘09 ultrasound… the doctor (probably sick of Lisa’s pushing) brought Lisa out to his office to review the imagery together.

     

    Once there, the doctor started to explain the scans to her. Then, he stopped. He ran images back and forth on the computer, not saying a word. Then, he turned to Lisa and said, “we need to get you in for a biopsy immediately.”

     

    An excisional biopsy was scheduled and after the month-long pins-n-needles waiting, it was confirmed. Lisa had a Desmoid Tumor. A what?! No, not a Dermoid… the ones with hair and teeth; a Desmoid Tumor – a soft-tissue sarcoma cancer that affects approximately 2 per 1,000,000 people.

     

    July 19, 2009, Lisa had the tumor removed along with some excess tissue around it to achieve wide margins. This would give her a better chance at being rid of the thing. That tumor must have enjoyed Halloween because he could disguise himself pretty well. His favorite costume was an abdominal muscle.

     

    Lisa had that muscle/tumor removed from her upper right rectus abdominal sheath. It was an intense surgery with a grueling recovery although Lisa healed just fine after about 9 months. These Desmoid’s have a 40-70% chance of recurrence, so she was relieved to be rid of it at that point.

     

    Fast forward again to May 2010. A random ultrasound of Lisa’s thyroid showed there to be a small nodule on the right-side. Another biopsy – inconclusive. It was suggested she return in 6-months for another series of needle pokes. Well, this new doctor really didn’t want to give Lisa the biopsy, stating that she was “just fine”, but would do it this time just to show Lisa that nothing was wrong. Biopsy – doctor said “normal” and, you guessed it, “just fine”.

     

    The next day, Lisa received a call from a surgeon who practiced with the previous day doctor. He said she had cancer. Again?! Papillary Carcinoma. A highly curable form of thyroid cancer, but cancer none-the-less.

     

    Well, she had surgery to remove her thyroid in January 2011, just 2 months prior to her husband departing for a year-long deployment to Afghanistan. I’d say that the 2011 year was probably one of her least faves thus far.

     

    Unfortunately - between the two totally unrelated cancers just 18 month apart – Lisa was finding her body to be slug-like and stamina to be non-existent. She managed to stay slender in the rest of her body – same as before, but her stomach grew and grew. Lisa looked like she had swallowed a cantaloupe and was often asked when she was “due”.

     

    This is where I’ve had to introduce many foot-to-mouth acquaintances.

     

    At first, Lisa tried to make the asker of that awful question feel better, since they would inevitably feel horrible after being told she had had cancer. After the umpteenth time of being asked how far along she was in her pregnancy, Lisa started simply saying, “I’m not pregnant. I had cancer.”

     

    I can’t tell you how many feet have unwillingly been introduced to mouths. It’s a pretty quick exchange, however this ‘meeting’ is most often-times awkward and unwelcomed. Yet, I do it anyway. Why? Because people like Lisa have been through enough already. The last thing she needs is to feel bad over her appearance, too.

     

    Now, if you like the awkward pause after asking a dumb question, then please, by all means, ask away. But, be aware that your words can wound… much more than you know. While your simple question may be one of ignorance, fine. However, to the askee, it may be just the thing to crumple them up into a ball when they get home.

     

    So, feet? Stay firmly planted on the ground. I have it through full disclosure that mouth is getting awfully tired of you when you aren’t wanted. Be sure of where you want to step, in order to avoid that snappy little tap dance right into the unwitting mouth of someone who has no desire to deal with your carelessness.

     

    Oh, and lastly... when speaking to Lisa about her thyroid cancer, please don't say she should be "glad" that she got the 'good one'. No form of cancer is 'good'. Ever.

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