Random Thoughts

When I was waiting for the nutritionist today, I perused the cancer resources that AZ Oncology has.  There is a small office at the end of the building that houses the wig/head wear room, an alternative treatment room and a wall of library information.  I spent about five minutes looking for books that pertain to my type of cancer and found nothing.  For me, this has become a rather common occurrence.  The thing about my cancer: there’s not much info on it.  People know about breast and ovarian cancer.  They understand colon cancer.  Tell them you have an adenocarcinoma on your liver that is possibly a cholangiocarcinoma and you are in for some funny looks.  There isn’t any special literature.  No people raise money to study your tumor and prevent it.  No survivor group exists (which is also a tad concerning when I think about it too long!)  You just have this odd ball cancer that doesn’t fit into the mainstream.  Yet, you suffer like those with the other cancers.  Chemo is just as violent.  Side effects will take away your hearing, your appetite and always your ability to lead a normal life.

I guess I have a form of cancer envy.  If I had breast cancer, people would be wearing pink ribbons and there would be yearly walks to collect money for research.  Leukemia has support groups.  Pancreatic and colon cancer have celebrities begging you to support research and get tested.  There’s camaraderie among those with similar cancers (though it does extend to all cancer patients).  I just don’t seem to have a lot of information on my cancer and I certainly don’t have a survivor I can discuss it with.  It can be frustrating and lonely.

As a side note, for those interested in being a chemo buddy I posted the perspective dates of my cancer treatments.  Just let me know if you’d like to be there via email or text and I’ll let you know if someone is going with me that day.


2 thoughts on “Random Thoughts

  1. Deb says:

    Consider checking out MD Anderson and Sloan Kettering Also U of A has a HBP Center hepatobiliarypancreatic center.

  2. Lyn says:

    Not to lessen Janine’s journey in any way , but I am somewhat empathetic with this. Autoimmune diseases are almost all considered rare when looked at individually, but when grouped together, are twice as common in the US as all types of cancer combined and as common as heart disease. They are in the top ten leading causes for death in women under the age of 65. (This all from the head of autoimmunology at Johns Hopkins.) Yet does any research funding go toward autoimmune diseases? Is the public educated about it? Very little. It’s all in our minds, according to most. (Yes, I have a personal interest in this.) You just keep believing in your guardian angels, Janine, both in Heaven and on Earth, and you WILL get through this hellish experience. You are surrounded by the love, light, and support of SO MANY. XOXOXOXOXO Lyn

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