Thursday, July 1, 2010

Readers...

I got a call yesterday from The James Cancer Center at OSUMC. Weirdest thing- it was the Patient Relations people. (For the life of me, I can't think of what the actual department is... chemo brain) Evidently, someone there reads this blog and brought it to their attention about the delay in getting my paperwork to the Doc in Boston. They called to make sure the problem was resolved. I didn't want anyone getting in trouble, I just wanted my stuff taken care of. I was going to have to call in again for my CT discs to be mailed, but the lady I talked to said she'd take care of it and call me today. Nice.
And since they are probably reading THIS- I wanted to say that overall, my experience at OSUMC James Cancer Center was positive. I liked Dr. Arnold (and staff) I think he was very professional, but he was hesitant to give me a real prognosis which was frustrating- I do understand why he didn't though. There aren't many guidelines for my particular type of cancer, so there isn't really a true prognosis. I think he did all he could do for me. I know that the hospital doesn't do the MOAS yet and from my research- that's what I need. I especially loved the nursing staff on the 9th floor of Doan Hall. They were all wonderful. I've really only had issues with the sharing of records and with the Oncologist I saw last year- who is no longer there anyway.
So- Thank you James Cancer Center.


I am still amazed at the people who read this blog. I look on my map and see that someone in Arizona is here a lot and someone in Hungary visits often. I know there are more I am unaware of. I wonder what this blog does for those who don't know me. I wonder if it helps them get insight on how one person copes with the diagnosis because they are close to someone who has cancer and wants to better understand THEM. I wonder if someone is reading this for research. I wonder if there is a doctor reading this that is thinking to himself "I want to fix her." So curious.
Until recently, I had ZERO idea that my uncle reads this. Though I am thankful that he does because I just might have a fighting chance through some avenues that I didn't know existed.

As for me today... I am sick. Side effects from this chemo are brutal. Nausea is never ending. I taste medicine constantly, my guts are yelling at me all the time. Loudly. Soon I will give them their own air shift since they like to talk so much. I am tired and very cloudy. I feel stupid. I can't remember names, faces, conversations and such. Must really be annoying for those around me.
I'm really not as tough as I'd like to think I am.

My Haiku:

Scars on my belly.
Never wearing bikini.
But I shaved my legs.

6 comments:

  1. Hey, at least women can wear a one piece to conceal the belly scars. I've been boldly showing off my own scars this summer, I figure what the hell.

    I think people read your blog because it's very human. No bullshit involved. I wish I could be as honest on mine. My family and friends always comment to me on your blog, they are big Rachel fans!

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  2. I read it because Dean wants to know whats going on with you and you are REAL, not a lot of BS. I love it!! I will meet you face to face one day!! I have met Miki a few times and LOVE her! I hope you get the right treatment that you need and HANG in there, like you can do anything else huh, DUH. LOL Christine

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  3. I'm the one in Arizona. My husband is in remission with NHL. I ran across your blog, and keep checking in on you because you have the most amazing spirit! I really feel for what you are going through-I've been here with my husband through chemo, so I understand a lot of the cancer stuff, I know how hard it is-and I'm a mom-it breaks my heart that you are fighting for your life and struggling instead of being able to just be a young mom and enjoy the everyday with your children. I never usually comment on blogs, just lurk, but thought you ought to know who I am, and that every time you see "Arizona" stopped by, you will know there were lots of prayers said for you when I did. Keep on fighting, and feel free to let out all of your frustrations here-it will really help.
    Mindy

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  4. Nice to 'meet' you Mindy. :) Thanks so much for the well wishes.
    I didn't mean to call you out- was just so curious.
    It still amazes me who would care what I have to say.
    Hope your husband stays well. And I hope your family never has to hear the word "cancer" again.

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  5. I found your blog through someone that visited my blog and you were on their blog list :). As a result, I added you to my blog page because your fight inspired me. I have lost several family members to cancer (melanoma) and currently have an aunt that has beat cancer for over two years when she was given two months to live. I also have family and friends in the military. I guess those common bonds are what have kept me coming back. I don't really have much time to read most of the blogs on my page these days, but yours is one I read every day.


    Your story inspires me. Your strength strengthens me. I so respect your raw feelings and openness.

    I have grieved on a different front over the past two years as my son was born with a rare genetic disease. I don't know how long we will get to have him, hopefully for a long time.

    As you write about your frustrations with getting medical records, appointments, I can TOTALLY relate. It has become my FULL time job to manage his medical care...a royal pain in the ass. However, like you do, you find people who are willing to help out and offer a hand and things end up working out.

    Keep pushing forward Rachel. My thoughts are with you daily.

    Brandi Oliver
    Keizer, Oregon

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  6. Hi Rachel,
    I'm also from Arizona. I found you on another blog roll while I was writing my own. I have recurrent ovarian cancer and I follow up on what's going on with you because I'm truly interested in your situation, diagnosis, treatments, and what you do to get through it. You inspire me- and I totally "get" you. Thank you.

    Stay strong. I'm right here with you.
    Patty

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