The cancer binder

At my first official appointment with the oncologist after diagnosis, Melissa the breast cancer consultant who visited with us first, handed me a large colorful binder. In it were all the phone numbers I could possibly need to their office, sheets of chemotherapy drug descriptions, various pages of resources for support, and a book titled Breast Cancer Survivor Guide. I was so numb I just kept shaking my head up and down to show that I understood everything, not really hearing a word. One thing stuck with me though, and I’ve been thinking about it alot this week. When she was done explaining the binder, she closed it and said ‘this is your cancer binder. There are sections to keep all of your paperwork, a calendar to keep track of your progress, and pockets to keep anything else you might need. You take it out when you need to use it, and when you’re done it gets put away and you go on with your life just like before.’ She set the binder out of sight at that last moment for emphasis on her point. I understood what she was trying to tell me- that I was still me, my life was still the same besides having cancer. I appreciated the concept, but her words unknowingly (until now) transformed that simple binder into the symbol for my cancer at that point- and it didn’t leave my sight for a full month lol. Having it in my hands somehow made me feel like I was a little more in control of the craziness that had taken over. Instead of being able to put it away and go on about my day, I felt more comfortable knowing exactly where it was. Then I could be positive and say ‘I’m going to beat this, I can do this no problem.’ A little control, even if it was an illusion, gave me needed distance. Looking back on the last 3 months since diagnosis, I think it was a blessing. An Inflammatory Breast Cancer diagnosis means things move rapidly- diagnosis, oncologist, port, chemo, scans and tests all within days. It takes a month just to get a grip on what is happening, all the while adjusting to yummy Adriamycin/Cytoxin which I got every 2 weeks at dose dense, not to mention the wonderful Neulasta shot that almost crippled me from the pain. The last 3 months have been nuts for sure, but I somehow have managed to arrive at the place Melissa originally intended. I thought she was crazy to suggest I could think about anything but the big C, but she knew what I didn’t- that it takes time. I no longer think about my (or anyone else’s) cancer all day, the gripping fear is almost gone, chemotherapy has become movie time for dh and I, and death and dying isn’t on replay in my mind anymore. I would even go as far to say I’m starting to feel like my old self again, just more aware and appreciative of life. Except with no hair- I’m even starting to care less about that as well. It’s kind of silly that the cancer binder changed from my control to a measure of where I am emotionally compared to when this all began, but I have no idea where the binder is now, and it has definitely been easier to ‘shelve’ my cancer and move on to other thoughts and events.

Hi everyone, I’m Lyn Kirby, a 30 year old mom of a 3 year old and a 2 year old married to a great guy and I was diagnosed with IBC the end of April 2009, I’m stage IIIB. I finished AC and have the second Taxol/Herceptin tomorrow. There are a planned 12 weekly sessions afterwhich I will have a full mastectomy plus lymph nodes on the left side-around Oct. ’09 and a (my choice) bi-lateral on the right. Then it’s scheduled radiation daily for 6 weeks followed by a year of weekly Herceptin treatments, and then another year of Herceptin though probably not weekly. I will have a full reconstruction when I’m able to, I haven’t even begun to think about that yet. I’m happy to be here and look forward to reading your blogs and posts!

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4 Responses to The cancer binder

  1. Hi Lynn, Thanks for the post. I had an old fashioned big blue 3 ring binder that my husband and I used to cart around to every visit and chemo appointment and surgery. It got pretty cumbersome with all the notes and info. You are right, it became a bit of security to us in a world of the unknown. I also always had to know where that binder was, “do you have the book,”I always said to my husband as we got in the car. Funny, a year and a half later, i couldn’t tell you where that binder is ;).
    I wish the best of luck with all your treatments…your in my thoughts.

  2. Angela says:

    Hello Lynn,
    Like you I also have a binder where I kept everything related to what it was my breast cancer, I also kept all the cards that my friends sent me and the drawings my kids made for me. It is a green binder, I chose it green because that is the colour of hope and I thought 3 years ago that that was all I wanted: “HOPE” & “PEACE”.
    I remain cancer free (thank God), I wish you the same for you!.
    Regards from Madrid (Spain)

  3. I had a binder too (actually, I had two and a notebook). 🙂

  4. Anne Feeser-Olesen says:

    I too have IBC. Am about a year ahead of you in diagnosis — am 45 years old and doing great. Just finished reconstruction on the right side only. Had everything you did, but no herceptin. Am on tamoxiflan. Please e-mail me if you wnat to “talk” more. I haven’t found a lot of people with the rare IBC.

    Anne

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