Friday, September 21, 2012

From Bad News to Worse News.



When I started this blog I named it “Adventures in Cancer.” What a silly, naïve title for a blog about battling cancer. I guess I gave the blog that name because I was thought that even though I would have to go through some tough times, I would be ok. I don’t think I ever seriously considered the possibility that I could actually die. Yesterday was like get a bucket of ice water dumped over my head.

I talked to Dr. Gore, my oncologist, with my mom and dad for a long time before they administered the Avastin. I knew the type of cancer I had, juvenile granulosa cell, was rare to begin with. Dr. Gore said it is acting much nastier than expected. I had a very bad response to chemo because the cancer started to grow again so quickly. (I know I’m not doing a good job of trying to re-explain everything he told me but bear with me). He explained how surgery was not a good option because even after having surgery in January to remove the tumor and parts of my “stomach pad” that had cancer, the tumor still regrew quickly. Also, if I had the surgery to remove tumors on my intestines, it would make getting this different treatment, Avastin, much more risky. The scariest side effect of Avastin that he said would probably kill me is bowel perforation and there is a much higher risk of that happening after a surgery like that.

Best case scenario: The Avastin shrinks my tumors and I continue to take it until it stops being effective or (I think) until it is causing too much damage to my organs.

Worst case scenario: The Avastin does not work. I asked Dr. Gore what would be the next step if the Avastin doesn’t work and he said there really isn’t a next step. After Dr. Gore and Dr. Barnes consulted with other doctors and pharmacists, they couldn’t find anything else. There aren’t any clinical trials for someone with my rare type of cancer. I suppose they would just try to make me as comfortable as possible until I pass on.  

I think the best thing to do would probably be to stay positive and really hope this Avastin does its job. But I’m feeling really discouraged and disheartened. I should be driving to class right now but I just couldn’t bring myself to go today. I want to try to continue living my life the way I was living it last week but it’s difficult to motivate myself with all this bleak news. I cried so much as the cancer center yesterday. I started to think of what I would want to say in my last will and testament. I don’t own anything of value and I have very little money, but I know that if I have any organs left that are still worth using, I want them to be donated to people who need them. I also know that I would want to be cremated, not buried.  I would want to make sure everyone who cares about me is contacted so they aren’t left in the dark. I would also want the little bit of money I do have to help pay for costs related to my death, though I don’t have enough to be of much help. I think that’s as far as I got in that line of thinking. I don’t want to die. I had plans and I’m not ready. But if that is what is in the cards for me, I think I can accept it. The worst part is how much that would affect the people that care about me.

I feel it’s probably best to put those kinds of thoughts out of my head and instead hope that this new treatment works. Trying to stay positive has served me well during this rough year so I need to keep it up. If I had one wish for anyone reading this, it would be that you would take the time as soon as possible to tell the people you love how much they mean to you. We don’t all do that nearly enough and you just don’t know what might be around the corner.

6 comments:

  1. I just do not know what to say right now.
    I am glad to hear that you are going to try
    to do the best you can with this "news".
    The good news is that you are being offered
    a new chemo. So, if they are not giving up,
    I have reason to believe it is worth a try.

    My best to you.
    and the dogs, and the rest of the family.

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  2. Hey Mary - what a year you've had. I'm so sorry to hear that things are so discouraging right now. I'm sure you feel like you've been fighting for a decade! But I'm glad that you feel the support & love of those around you. Hang in there and keep pressing on. I'm praying for your healing and that you'd know God's presence and peace like never before!! hugs to you!!

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  3. I'm not sure how long your journey is, or how long anyone's is.. how rocky it'll be, or what twists and turns and forks, I just know you're on the right path, and even if it gets confusing or strange or scary.. you find a way to make it right.

    Life happens.. you choose what it means to you, how you'll react to it, and you've done a great job from day one. Everyone can be a little naive until they take the journey. Maybe you were naive, maybe not.. but you've been great, you are great.

    I don't know how long your song is, but it's beautiful, and it's more beautiful that you share it with people.

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    Replies
    1. I read and re-read parts of Mary's blog regularly. Each time the words mean something more or different to me. Your words to Mary were simply amazing. Mary's spirit lives on in so many ways, and her blog is priceless to me. It's all Mary. Will my life ever have true joy again? Mary added the spice, the drama, the creativity, the unexpected, the tanacity and the tenderness to our family (to me). She was funny and intellectual and sometimes completely unpredictable. I close my eyes and feel the last most tender moment between us, before she was heavily sedated. We were driving home from the hospital to meet hospice. No words were spoken that I recall. Mary simply laid her precious head on my shoulder, and I gently stroked her sweet face and held her close. Mary's Mom

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