October 26, 2009

Addicted to Your Illness?


I have spent the last six years reading, researching, and writing about cancer.  I am so fulfilled by this work, but sometimes I wonder if it is always the healthiest choice of how to spend my time.

My cancer has never been in remission and it could be with me for a long while yet. Cancer is an uninvited companion in my body, but that doesn’t mean it always has to be on my mind.  Usually my expertise about young adult cancer seems like a great asset that benefits my own care and helps others too.  But lately I’ve been wondering if I have built a little cancer trap for myself.

Right now I have the luxury of feeling well.  I don’t look or feel like a cancer patient, but I think and write like one.  What would I write about and how would I spend my time if I moved cancer from the front burner to the back burner in my mind?  I don’t even know the answer to this question. And that’s a bad sign. Perhaps while I’m feeling well, I should focus a bit more on the world beyond cancer.

So I’m giving myself a little assignment.  For the next few weeks, I’m going to write one post per week that is not about cancer.  Just for the hell of it.  Just to break my little addiction to the small world of illness I’ve built up around myself.  I hope you’ll still read and comment as I experiment with the great beyond.

Do you ever feel like you need a break from focusing on illness or that it consumes too much of your identity? Do you volunteer for cancer organizations, work in the healthcare field, blog or write about illness on top of being a patient too? I’m taking requests: What would you like me to write about in my non-healthcare posts?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about coping with life beyond illness.

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  1. Kate Says:
    October 26th, 2009 at 8:36 AM

    Good for you and good luck. As you know I blog about cancer but I’ve made myself take weekend breaks and post cartoons or videos or something else so I don’t completely burn out. I’ll be interested to see what you decide to post. -Kate

  2. Leslie Rott Says:
    October 26th, 2009 at 9:34 AM

    Is it an addiction? I’m not so sure. But I think that you’re right in that we can become obsessed with anything illness related. It’s definitely a full time job, in and of itself. I think it’s a great idea to try and write non-illness related posts. Just thinking about it, I wonder if I would actually have anything else to write about…

  3. Laura Otis Says:
    October 26th, 2009 at 10:44 AM

    It’s funny, I was just talking to a friend the other day about how sick I was talking, reading, and hearing about cancer. Before I got sick, I was the epitomee of health. Now it seems I have become and expert on a disease that I never wanted to know about in the first place. I have a love/hate relationship with cancer. I feel like it has defined me for so long, but at the same time, without cancer, I think I would feel empty. At this point I’m not sure what I would do without it.

  4. Michelle Says:
    October 26th, 2009 at 11:32 AM

    About once every other week, I declare a day to be ‘cancer-free’, meaning that all of the volunteering, advocacy and work that I do for the various orgs stops. I have even declared cancer-free weekends, where I don’t attend meetings, events, blog, email, or post anything about cancer. I don’t think about it. I take the time for myself, and this has helped me in so many ways. It helps me re-connect with my kids – they need to see that, while it’s important to help others, it’s also important to take care of yourself emotionally, physically and spiritually. Plus, by doing this, I give myself permission to spend time doing what I want, which oftentimes means playing with my kids, cleaning my house, and taking naps! I think it also helps me get re-invigorated, so that when I do get back into the swing of things, I am better at it. I think this is a very important step for you, and you will find that it’s very helpful. What should you blog about? How about your favorite non-cancer book? Do you have a favorite author? Maybe your favorite musician?

  5. Cathy Bueti Says:
    October 26th, 2009 at 12:49 PM

    Kairol…you know how much I can relate to this post! I am not sure if I would say “addicted” but for me it may be more “obsessed” if you know what I mean. Either way I spend alot of time reading, writing, blogging, and speaking about cancer. It certainly has become a huge part of my identity…being a cancer survivor. Sometimes I feel as though that label comes right after my name! I had been thinking about this a few weeks ago. How do we identify ourselves? What labels do we give ourselves and in what order? For me I have been an OT for many years, more years than I have been a writer so from a career standpoint I have not yet owned the writer in me. If someone asks what I do for a living I say that I am an OT when that is now what I spend the least time doing. And because I work in the healthcare field it is hard being a cancer survivor. I question whether or not I can continue with that career because it is too emotionally hard for me. I can relate way too much to my patients and it has become stressful. And yet with my writing I wrote a memoir about my cancer experience and write alot about cancer on my blog. And it is hard too. It feels like the more I write about it and speak about it I obsess more over my health. So on my blog I have started to try and add more posts from time to time that are non cancer related.

    I will always be an avid reader of your blog and I look forward to hearing about other interests and opinions you have that are not healthcare or cancer related! You are a brilliant writer and I think this will be good for your soul….

  6. Kairol Rosenthal Says:
    October 26th, 2009 at 5:44 PM

    Thanks for your comments! Cathy – What a triple whammy you’ve got: cancer patient, author of a cancer book, and OT. I can see how cancer would begin to feel superglued to your identity.

  7. Fed Bernal Says:
    October 26th, 2009 at 7:50 PM

    Well, I don’t have much of a choice… being a cancer survivor, a cancer researcher and a moderator for a testicular cancer forum means that I deal with cancer every single day. I didn’t have a choice becoming a cancer patient, and I was already working in the field when I was diagnosed. Being a moderator keeps me attached to the human aspect of the disease, kinda like a complement to the labwork. I do agree that sometimes it can be rather overwhelming having to see this day-in and day-out. Breaks from this type of stuff are definitely needed, and Kairol, I give a hat tip to you for doing just that! We all need a vacation every once-in-a-while!

  8. H Lee D Says:
    October 26th, 2009 at 10:42 PM

    What should you write about? What inspires you? Where do you find joy or marvel or laughter? What is intriguing? What would you do if suddenly you *were* in remission? What are your hopes and dreams?

    I sometimes feel like a traitor because I’m *not* active in the cancer community, but I don’t want it to be my life. Did my time and I’m *done* I still talk about it, I still blog about it some, I still offer help and advice to any who seek it, but I don’t want to live it. I don’t want to maintain the level of anger that I would need to stay focused. Anger is, to me, emotional cancer, and I don’t want to fuel it or live in it or by it. I want to get rid of it.

    OK, but this isn’t my blog, so I’ll stop now :)

  9. Angella Hamilton Says:
    October 27th, 2009 at 1:02 AM

    I think we all need a break sometimes. I went through the usual. Rah, rah – race for the cure, then I wanted to ignore it and go on with ‘life’ then I felt crappy and realized I wasn’t getting away from it so easy- since I am tested positive for the BRACA gene I am always getting tests etc. so, here I am – advocate.
    It is what it is- take a break and then get back to inspire some people :)

  10. Dianne Duffy Says:
    October 27th, 2009 at 3:23 AM

    I too was diagnosed with the BRAC 2 gene. I think I’m obsessed because I’m still bitter that the Dr. brushed me off when I told her that I have a strong family history of breast cancer. Grrr. I keep looking to see if anyone has had a similar experience. I used to write all the time not about cancer. I would write about favorite events from my childhood. Do that. Keep those memories alive. Write about something positive. You (and I) need to be balanced.

    Time for bed. CT Scan tomorrow. Last one landed me in ER…

  11. Wendy S. Harpham, MD Says:
    October 27th, 2009 at 8:04 AM

    Dear Kairol,

    During my 1st and 2nd remissions, I resumed practicing internal medicine and tried to put my cancer behind me. When on-going ill-health made it impossible to care for patients anymore, I turned to writing and speaking about survivorship as the best way for me to continue to help others. I’m confident that had I been well enough to resume medicine, I would have tried yet again to put my cancer behind me.

    Paradoxically, when I write and speak about survivorship I am escaping my own cancer. In “doctor mode,” I am not thinking about myself, my health, or my future at all. Rather, I’m totally focused on my audience (patients and/or caregivers and/or healthcare professionals), just like when I worked at the hospital.

    Keeping cancer at the center of my life has been good for me. Yet my husband and three children (now grown) have paid a price for my choice: They hear and see more “cancer” in their everyday world than they would otherwise, more than they like, and more than is good for them.

    My family and I have talked about this periodically. They understand and respect my sense of obligation to my extraordinary survival (19 years, and counting!) and my sense of calling as a physician. And I understand the emotional discomforts and needs of each one of them.

    All five of us have made compromises. We have agreed on boundaries. I make an effort to be sensitive to them. I avoid cancer-stuff when there is no need to bring it up. They don’t hesitate to tell me when they don’t want to hear anything cancer-related that day.

    Kairol, I’m glad you highlighted this topic. Dramatic changes over the past 30 yrs have led patients to embrace — even feel proud of — their survivorship. That’s great.

    But sometimes there can be too much of a good thing. People who are swept up in the world of cancer risk missing out on experiences and relationships that have nothing to do with cancer and that could have brought them great joy.

    Survivorship is an art. Some people do best to keep cancer as far in the periphery of their life as possible without jeopardizing their health. For others, involvement — even absorption — in their survivorship helps them through tough times, or helps them make the transition to a “new normal” that integrates the changes and losses in healthy ways.

    A “Healthy Survivor” is a survivor who gets good care and lives as fully as possible. What makes Healthy Survivorship so challenging is that both you and your circumstances change over time.

    So Healthy Survivorship involves on-going self-awareness of how your current identity as a survivor is affecting you and those who care about you. Is it for better? Or for worse? Sometimes you can figure out the answer yourself. Other times you might need to talk with someone who understands and cares.

    The next steps to Healthy Survivorship involve (1) knowing what choices you have, (2) choosing what is best, and then (3) asking for and accepting support.

    Figuring out the role of survivorship in your life can be hard work. But, as Socrates said, “The unexamined life is not worth living.”

    With hope, Wendy

  12. Kairol Rosenthal Says:
    October 27th, 2009 at 10:58 AM

    H LEE D – This is YOUR blog. It is anyone’s blog who has something useful to say on the topic I’m writing about so please, rant all you want. Thanks for your comment. DIANE – I’m wishing you all the best today with your CT scan! WENDY – What an incredible comment. Thanks writing it. I could especially related to the part where you wrote “Paradoxically, when I write and speak about survivorship I am escaping my own cancer.” Writing my book, speaking, giving keynotes, even blogging is one of the best escapes from my own cancer, because as you said, I too am focused on the audience, the reader. But I am learning that this is my only escape from cancer. How one dimensional of me!

  13. Michael Says:
    October 28th, 2009 at 6:59 PM

    I am also working in the healthcare field and a survivor of leukemia. Somedays I want to run as fast as possible from anything health related and it can be difficult. Totally understand the need to take a break from the cancer as it can be too attched to my self and need a break. Unfortunatley living with chronic cancer can make daily thoughts difficult to wonder far from my situation. Working with patients adds a whole new dimension. Look forward to posts on non-related things to cancer, we all need the break

  14. Katrina Says:
    October 29th, 2009 at 4:19 PM

    I feel like H Lee D. It would have been very easy for me to have made cancer my work in addition to my life. I could have studied patient experiences, could have looked what what improves quality of life, any of that. Shortly after my treatment I decided that living my life meant not tying it to cancer any more than it was. This was made easier because treatment was done. I wasn’t living with cancer, so to speak, though I always assume I am living with cancer. I don’t think the same way I did before cancer. I don’t count on living as long as I had imagined. And for that reason I wanted whatever window I was given to be filled with the activities and choices I never allowed myself to really make before cancer. Mind you, I think of cancer every single day and it so central to who I am, but I didn’t have it in me to make it more of my life than it already was. It is such an individual response and one I found some solace about after reading Alice Trillin’s piece on Garden Peas and Dragons from so long ago. I feel I have made the right choice for me, but there’s no question sometimes I feel left out of the club and when I do have those cancer freak-outs, those who haven’t had it at age 36 don’t quite understand. Thanks for such an honest post.

  15. Rachel Says:
    October 31st, 2009 at 4:29 PM

    It’s a big reason why I jumped at the chance to start writing for a diabetes website and keep my personal blog for the other stuff. Life is so much more than counting carbs and exercising. Type 2 diabetes is time consuming at the beginning and when progression occurs, but the in-between times, not so much.

    Still, I see the need for diabetes advocacy and that is why I need to write about it somewhere.

  16. Jess Says:
    November 3rd, 2009 at 1:08 AM

    I would definitely say that I am addicted to my cancer. By that, I mean that I feel like I spend so much (too much!!) time thinking about, reading about, talking about, and worrying about my cancer. I feel like people tiptoe around me sometimes (unintentionally, of course), and of course there’s the huge scar I carry from ear to ear (from neck dissections) that might as well glow like a lightbulb everytime I look in the mirror. I wish there was a way to take a vacation from cancer, even for just a day. But so far, I haven’t found a way to do that. I think that once we are diagnosed, the cancer just becomes a part of our psyches, despite our best efforts to not let that happen. Even when those wonderful words “no evidence of disease” are heard, there will forever be that little voice in the back of our heads that says, “But, it could come back”. I am also in nursing school (will be graduating in 3 months), so healthcare is my life. I see cancer at work, and I live with cancer at home. I just wish there was a way to forget about the cancer sometimes.

  17. Pierre Says:
    November 14th, 2009 at 9:24 PM

    It occurs to me after reading all these comment how nice it would be to meeting some of you in person! So many different experiences! Anyway, I was diagnosed with oligodendroglioma (brain cancer-low grade) at age 16 and again last year at age 41. There have been times in my life where I have thought about nothing other than the the big tumors in my head — the last one bigger than Elvis even!–but years have gone by in my late 20s and 30s where I haven’t given cancer a moment’s thought. I guess right now I am somewhere between these two extremes–not a bad place, actually!

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