December 04, 2009

How Has Your Identity As A Cancer Patient Changed?

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It’s time to clean out my cancer closet.  Between living with cancer for nine years and researching and writing a book on young adult cancer for five years, I’ve accumulated an abundance of oncology articles, books, and magazines.

The task is more emotional than I anticipated.  Lodged in my collection of scientific data are notes I scribbled in the margins, like: “None of these stats apply to me. Is it time to abandon Western medicine?” I’m still am not cured.  Thankfully I have learned how to manage my cancer better now than when I wrote that note.  None the less, it’s sad reading my paper trail of desperation.

It’s hard getting rid of my books on palliative and end of life care.  They were invaluable in helping me write resource sections for Everything Changes.  A loud voice says, “Hang on to these Kairol, you might need them someday for your own care.”  Cleaning my cancer closet is highlighting that over the past two years, I’ve come to expect that I am going to get a secondary form of cancer.  I hope I am wrong.  I don’t get worked up about it.  But it’s a thought I can’t shake.

Some survivors make scrapbooks about their treatment.  When I last  moved apartments, I culled my collection of get well cards from a  mountainous box to one manila envelop. I might even want to ditch that now too.  Over time, I cling less to my cancer memorabilia.  Yet, I still commemorate my cancer care almost daily through my writing.

I like my perspectives on cancer care.  I want to continue blogging, writing columns, speaking, and working on special projects with organizations. But lately I’m making a shift from having two feet in the cancer world to one foot in and one foot out.  For example, at the end of this month, I’m stepping down as co-host on The Stupid Cancer Show.

My identity as a cancer patient is shifting.  It isn’t easy.  But it is good.  Growing pains are better than cancer pain.

How much do you want to remember you cancer care and how much do you want to move on?  Do you save research information or get well cards?  Do you ever anticipate getting a secondary form of cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how Geoff’s identity changed as a 13 year survivor diagnosed at 22.

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Comment(s)

  1. Cathy Bueti Says:
    December 4th, 2009 at 3:10 PM

    Kairol, great post. I can so relate! In writing my book “Breastless in the City” since it was a memoir I didn’t accumulate the reference books as you had although I had to refer back to a manila folder that I still have with my detailed biopsy and other medical reports. When I wrote my blog post on the new breast cancer guidelines I actually pulled out that info and I have to say it made me feel anxious. It made me feel scared. Part of me just wants to forget all that crap. But in becoming a writer after my cancer experience it comes up all the time. On my blog, in my memoir. I feel the same as you do. I would like to take one foot out of the cancer world. I feel it has become too much of my identity. But then I think…how could it not?

    I also have a box with all of my get well cards that I never open because it is too hard to look back. And then I think…why keep them? It is the same with my first husband’s stuff. He died 15 years ago and I still have now only one box with things of his I couldn’t bear to part with. Being a widow is also a part of my identity but I think less so than cancer. Maybe because I am married again and moved on. But as for cancer I fear I will never move on because of the fear of recurrence I live with daily. Sometimes it can be paralyzing for me.

    I think it is good though to move one foot out… Move on to something else without totally abandoning that part of your identity. I have to say though…I will surly miss you on the Stupid Cancer Show!! You are a very talented writer as well as interviewer and you have a great radio presence! I have no doubt that whatever you move on to you will be a success at!

    Hugs,

    Cathy

    http://www.cathybueti.com


  2. mikhael Says:
    December 4th, 2009 at 7:16 PM

    Very good points, sometimes it feels almost fearful to take that step away as you mention and one foot in analogy nails it on the head. I like to keep a healty respect for the cancer but remember that it must not define oneself.


  3. Rhonda Says:
    December 4th, 2009 at 7:22 PM

    I agree. Amazingly, I wrote about the same topic this week as well.

    After two years of constant chemo, my life is more than being a cancer survivor. It’s also more than any other label I may use from time to time. My ever changing life is more difficult with cancer, but no less mine. I have just gone from ‘claiming my cancer’ to ‘reclaiming my life.’

    Check it out… http://www.rhondaradliff.blogspot.com.


  4. ALK Says:
    December 4th, 2009 at 7:44 PM

    I have epilepsy. I had cancer but I call myself neither an epileptic nor a survivor. I understand these terms are helpful to some, but God, please! I don’t want ,my life to be defined or for me to define myself by these illnesses, even if they have changed me and my life, for mostly the worst.

    Seriously, the only thing I can say I survived is my childhood. Ha!

    I struggle with my health but I try to live my life the best I can in spite of the problems. Sometimes they win though and I have to rest. And sometimes I suffer a lot. And sometimes things are good.

    Life is about change. Nothing lasts for ever and movement is good.

    PS In my business I know a woman who hit the “trifecta” — thyroid cancer, breast cancer, and cervical cancer. She’s in her 60s and just got a new boyfriend. I think about secondary cancer sometimes too. but then I try not to think about it….

    By the way, I say throw out those books. Why are you holding onto something you may never need? A clean closet leaves room for new, good things to come.

    I hope the next steps are good ones, Kairol.


  5. Adena Says:
    December 4th, 2009 at 8:45 PM

    oh, no! I will greatly miss your insightful questions and comments on the Stupid Cancer show!


  6. Anonymous Says:
    December 4th, 2009 at 9:34 PM

    I think I could move on – if my body still functioned as it did before cancer surgery. It’s pretty hard to move on though when you have a constant reminder that never lets you forget or feel even slightly ‘normal’ again.


  7. Kairol Rosenthal Says:
    December 5th, 2009 at 12:37 AM

    The anonymous comment above this raises the point of how can you move on when your body never lets you forget that it is not normal. It is easy for me to talk about moving on because the changes to my body are minimal compared to what so many others face, and because I’ve had cancer for nine years, so the changes are a part of my daily life now.

    I kind of cringe when I hear the phrase “new normal”. I’m not sure why, because it is a good descriptor. For many people I have spoken with, the serious alterations to their bodies are constant reminders of their disease. For many it takes time – years to adapt to the alterations to the point where they don’t think about it any more. For some, that may never happen. I’m curious to hear what others have to say who have faced more serious physical changes than I have and how it they moved on or did not move on over time.

    Thanks for your comment Adena. Glad you’ve enjoyed my presence on the Stupid Cancer Show!


  8. H Lee D Says:
    December 5th, 2009 at 10:40 AM

    As far as cancer is concerned, it is part of me, it has helped to shape who I am — like all other major (and minor!) events/stages in my life, but it is not my identity. I shy away from being too active in the cancer community because I don’t want it to be my life. When I was in treatment, I was adamant that I was a person with cancer, but foremost, I was still a person, and I maintain that now.

    While no one would know by looking, my body is still getting back to its pre-cancer self. It’s taking years. It’s a mild complaint, and I believe that I will continue to progress and someday find my old body again.

    However, as far as “the new normal”… I don’t relate to it on the cancer front, but I can in another way: I am a musician and I teach music for a living. When I was half way through college, I lost almost all of the hearing in my right ear due to an ear infection.

    Half deaf is the new normal. It sucks. I haven’t heard anything but ringing in my right ear for 14 years. For me, there was a choice: I could be bitter about it, or I could accept that this is how it is, adapt to it, and move on. I’ve adapted. I still play music. I still teach music. I don’t listen to music over stereo headphones because I miss half of it. I make sure I always sit on the left end of a long table so I can hear table conversation. There are adaptations that just become part of the flow. Being angry, resentful, bitter, or giving up doesn’t change whether or not I can hear. Might as well do what I can to let it go and live the best life I can live.


  9. Dori Says:
    December 5th, 2009 at 10:29 PM

    Small Rant Before Actual Post: Stepping down?! :( No! Kairol! You rock the house on the SCS! They need some estrogen on there! ;)

    Kairol, in the grand scheme of things, I don’t want to forget it. At times I wish I didn’t have the flashbacks, the chills every time I get phone calls from my doctors or reminders that my next appointments are creeping up. But the fact of the matter is, it did happen. I can’t forget something like this, no matter how hard I try. My scars are there, on the outside and in. I can’t change them, nor would I want to. I refuse to let them be erased because I am also a voice for others going through the same thing. That’s kind of what i[2]y has done for me. They empowered me moreso than before, and taught me that I can make a difference, however little or small.

    I do save my things from treatment, surgeries, etc. I don’t get rid of it. I like to remember that people care about me, that I got the most amazing treatment I could have received. It reminds me that I accomplished something, and am still around to fight this crap they call cancer. :)

    I have a small inkling that my cancer is going to pop up again, and I get scared of the idea that, even if my thyroid cancer doesn’t spring up again, I will get another form of cancer. It’s scary, but it’s something we need to watch for. As long as I take care of my body and watch out for signs that something may be wrong, I will be able to take whatever comes head-on. Sure, I’m afraid of something else. I’m afraid of my current cancer causing more issues than it already has. But you know, if it happens, it happens. We just need to vent, bitch, whine, moan, do whatever we have to do to get all of our initial emotions out of our system. Then, and only then, we can face them and conquer them.


  10. Melissa Says:
    December 7th, 2009 at 3:39 PM

    I guess I am several steps behind in this process. When I was diagnosed with thyroid cancer, my now 9-month-old baby was nearing the end of her 5-month stay at the NICU. She was born with a heart defect and I had to time my surgery with her much more complicated and scary open-heart surgery. I couldn’t really focus on my cancer. My prognosis was good, and I just charged ahead. My child had to be the focus, and how dare my body try to attract attention to itself? After surgery, the pathology report that my tumor was of the tall-cell variant and I would need additional treatment. Again, how dare my body throw me this curveball? In any case, now that my baby is home and healthy, and my surgery and ablation are done, I am finally coming to understand that this is my new reality, with the scans and the synthroid. Hopefully in a few years I will be able to shed some of these layers.


  11. Kairol Rosenthal Says:
    December 8th, 2009 at 1:36 AM

    Melissa, The day I found out I had tall-cell variant I fell apart. I felt like someone had just placed a ten foot tall hamburger in front of me and told me to swallow it whole. (I don’t know why that image came to mind at the time, but that day, which was so many years, ago all I could think about was hamburgers that were too large to eat!)

    I ache for you having to go through that experience in the midst of caring for you very ill baby. I cannot image the layers of intensity and how they pile up.

    I’m rooting for you big time. An interesting note – over the years my pathology has reverted back to normal papillary with no evidence of tall cells. Don’t know by but I’ll consider it a gift!

    All my best,
    Kairol


  12. jingle Says:
    December 16th, 2009 at 9:32 AM

    Hello:

    I strongly agree that everything changes, if you have strong will to survive cancer, or other diseases, physical and mental, you can change your life and win the situation…

    Great Inspirational blog!

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