Some Frustrations

This is going to sound a lot like complaining, and for that I apologize.  But these things have been weighing on my mind lately and sometimes it helps to type it out and get it out there.  As most of you know, I let my hairdresser shave my head last night.  I was just going to cut it, but when he started shaving it, a huge weight lifted off.  I hadn’t realized exactly how bad my scalp was hurting.  I had previously described it as tingling, but it had moved on to burning.  As he shaved my head, though, the pain receded.  That doesn’t mean I didn’t cry.  My hairdresser is amazing and kept me talking while he did it, so I didn’t cry till I was getting ready to head out the door (and on the way home).  When I got home, though, it was okay.  Little Man said, “Mama hair” and rubbed my head.  He hugged and kissed me and cuddled with me and it helped.  My frustration, however, is this: please don’t tell me that it will grow back in (thicker, curly, whatever).  My doctor has told me that I will probably be on chemo for the rest of my life.  Everyone says it will grow back when I finish chemo.  Guess what?  I don’t expect to ever finish chemo.  So when someone says that my hair will grow back when I finish, it’s not encouraging, it’s discouraging.  Please don’t do it.  Feel free to tell me all about the pretty scarves or hats or wigs I’ll get to wear.  But don’t tell me it will grow back.

My other frustration may sound petty, but it is what it is. It’s been bothering me for awhile.  I have a rare cancer.  And I’m really tired of seeing all the fundraisers for breast cancer.  Breast cancer is way over-funded based on the amount of people who actually have the disease.  I get it.  Breasts are important – both to men and women.  The “Save the TaTas” campaign makes me smile every time I see it.  I have a dear friend who lost a mother to breast cancer and another friend who survived it.  But what about those of us with rare cancers?  Did you know that there is no set treatment regiment for what I have?  I am currently receiving a chemotherapy that we think might work based on the fact that my cancer is in my abdominal cavity.  Can I just tell you that that doesn’t inspire a lot of confidence on my part?  I traveled 900 miles to see one of the best doctors in the world for my cancer and even he can’t tell me the absolute best treatment for my cancer.  Why?  Because my cancer doesn’t receive the funding that other cancers do.  And that frustrates me.  But what can I do?  This is happening, but what can do about it?  I can post about it here or on Facebook, but what do I know about fundraising?  How does a person get beyond their personal friends and family and get the word out there?  I don’t know and it bothers me.

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7 Comments

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7 responses to “Some Frustrations

  1. Pirate Captain Drew Rogers

    Pretty Scarves!?? Arrg to that!
    add an eyepatch and go pirate me lass.
    and Ahhrrg to thems that don’t like pirates! Love ya Captain Drew.

  2. Mama

    How about a silly hat contest among your blog followers???

  3. Kathi black

    I feel your frustration with people not understanding your “rare cancer”. My sister, 45, is dying from peritoneal meso right now and there is not one thing any of us can do for her but sit and watch it take her from us. To top that, people ask “how is your sister doing?”… how do you answer that? She has a terminal cancer and was fine five months ago. She’s not doing great! People mean well, but it’s hard. No one knows was peritoneal meso is and to explain that her exposure asbestos (which is the only thing that causes this type of meso) is a secondary exposure from possibly our dad’s work at a shipyard when we were kids asbestos as the cause. No one understands. No one I know can help me deal with what is happening to her and our family right now because I know of no one that is in the same situation. Sorry for my vent! I pray for you and your family to hold strong and hang in there! You are doing great! … and yes a silly hat contest is fun… better yet just wear a hot pink silk bandana and love it!

  4. Debbie

    Thanks so much for venting and your honesty! Your word make a difference – keep on 🙂

  5. Angela Ellis

    Love the silly hat contest, but take it a step further–tell blog followers to post a picture of themselves in a silly hat on their Facebook page with a comment about why they are doing so and info about myxoid sarcoma and how it doesn’t have enough funding. Then post a link to this blog. Just throwing this out there–not sure how much traffic you want on here, but I think the more people are aware, the better. Consider the possibility of a YouTube video.

    • Angela,

      What a great idea! I know nothing about creating a YouTube video, but I think I know someone who might can help me. I’m going to feel pretty crappy this week, but maybe next week I can follow up on this!

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