December 09, 2009

Living the Limbo Between Sick & Healthy?


Last week I started cleaning out my cancer closet.  This week I’m continuing the job.  In my filing cabinet, I discovered a list I made called 32 Ways To Spend My Time.  I wrote it while living in limbo-land after my first treatment.  I was well enough to get out of the house most days.  But I didn’t have enough reliable physical energy to start finding a job, get off disability, and tackle a normal work week.  I felt lazy, cabin fever stir-crazy, unproductive, and anxious to have a life again.  So I created a list of productive (and inexpensive) ways to spend my time.  My list included:

Update my address book * Visit my great uncle * Learn geography * Listen to new kinds of music * Find new and unusual museums to visit * Stretch * Reduce and donate my belongings * Do drop-in volunteer work * Find a dog that needs to be walked * Make thank you collages for people who had helped me out.

To other 28-year-olds, this list must have seemed elementary.  To me it was monumental and gave me purpose.  Many of the tasks on the list I could do even on days when I wasn’t feeling well.

When I interviewed young adult cancer patients for my book Everything Changes, the most frequent comment I heard was that life after treatment was the toughest part of the cancer experience.  After treatment is often the first time many of us have to stop and think about all that has just happened to us.  It was important for me to pay attention to these feelings, but I didn’t want to do it 24/7.  This list helped give me some focus and direction.  No matter how simple or how trivial the tasks, I needed to have a life outside of my sick bed.  How ironic that one of the items on my list was “Get a tape recorder, interview people, and make a project out of it.”

What was life like for you after a prolonged period of illness or treatment?  Did you find satisfying ways to spend your time?  Were you financially or physically limited by what you were able to do?  How did you handle it?

I got a tape recorder, interviewed people and made a project out of it called Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Check it out.

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  1. Becca (cynnycal) Says:
    December 9th, 2009 at 5:59 PM

    how funny. I wrote about similar feelings/thoughts a few years ago:

  2. Meenu Says:
    December 9th, 2009 at 9:35 PM

    this is exactly how I am feeling these days. in a weird limbo with a pet scan next week, not being able to sleep these last several weeks as I’m hyper-thyroid and it will be another 4 weeks till my TSH gets less suppressed with another possible meds dose change. my heart has been racey and wiggly weird feeling and it freaks me out.

    I know I should be grateful for the good health I have but I am overwhelmed with medical debt and not having a job.

    so thank you for the reminder that post treatment life is supposed to be the harder time. because otherwise I just think I am a loser incapable of changing my situation.
    much love, Meenu

  3. Anonymous Says:
    December 9th, 2009 at 9:35 PM

    Becca – I read your blog entry. Man, how much I wish I was normal again too. Fricken cancer.

  4. tara Says:
    December 9th, 2009 at 10:07 PM

    It’s been almost 8mo since treatment and I’m still not feeling well enough to drive/work. Most of my time is spent “case managing” for myself as I call it. It’s challenging to find stuff that’s fun that you can physically do, but i try to think of some things.

    Overall though, I feel I would get by better if I didn’t have pressure from the outside world lurking. The reality is, I have to get better enough to work and I’m nowhere’s near there yet. Everyone expects you back right away, or not to be sick for too long. If I didn’t have all the pressure to get better before my body was raedy, it’d make life post treatment 10x easier. That’s the worst part for me. Cause although I’m doing everything I can to get better, I really have no control over it. And it’s not that settling to just hope disability, insurance, etc.. will last as long as you need it to, but have no guarantees, and know it’s kind of this “race against time”.

  5. sarah Says:
    December 9th, 2009 at 10:21 PM

    I wish there was life after cancer for me. Boy, do I wish that…
    As it is, there is life with cancer and that’s all there’s gonna be.

    It’s wierd, everyone seems to expect someone facing death to be filled with this overwhelming desire to get out there and tick off a million things off a ‘things I must do before I die’ list. Problem is, my list of aspirations for my future was made up of day dreams of stuff I wanted to do in the decades ahead with my fantasy partner and perfect kids, big house in the country, trips overseas, dream job etc. etc. Not the sort of stuff you fit in between treatments and knowing you only have a limited amount of time left in and are only going to feel worse and worse. I’m Queen of Apathy now. I go to bed kind of hoping I don’t wake up – it would be so nice, just to close my eyes and fade away. No more needles, lethargy, sickness.

  6. Wendy Says:
    December 9th, 2009 at 10:56 PM

    thanks for the post K! it’s great to be reminded we all go thru similar stuff!

  7. Kairol Rosenthal Says:
    December 10th, 2009 at 12:27 AM

    Dear Queen of Apathy – Doesn’t it suck that life is not like the Bucket List – some jolly uplifting sprint to the end where you get to tackle tangible life lists and call it a day? (Okay, I’m assuming here because I never saw the movie.)

    A few months back I visited a young woman who was facing end stage cancer and her thoughts and comments really echo what you were saying. She had such a strong desire to just go to sleep and not wake up in the AM. I know another cancer patient in a similar space who has started dating someone…shocker and kinda cool. Hang in there and thanks for your comment. We all need to hear your voice and your experience!

    MEENU et al. You are so not alone. Life after treatment was not a victory lap for me. It was a time of total confusion. There is a ton of uncertainty about energy levels and when the ability to go back to work will match the financial needs to do so. I think my list of 32 things to-do was some attempt to bring control to my life in the midst of all the chaos. Losers you are not!

    I also see no reason why you can’t be grateful and pissed off at the same time. The two are not mutually exclusive in my life at all.
    Big Love,

  8. Meenu Says:
    December 11th, 2009 at 10:04 AM

    man Kairol, I appreciate You so much!

  9. staci Says:
    December 13th, 2009 at 11:39 AM

    all of this rings so true…i have just recently discovered this blog and am now reading your book. it really is amazing how so often we feel as though we are the only ones dealing with things a certain way, when in fact so many of us share these emotions. i am giving the book to my husband to read after i finish, and then my mom. thank you.

    i feel like i am in a constant state of limbo. i got married 6 months ago to a wonderful man, and we want to start a family, but now my cancer appears to have come back, so i have to figure out the next step… which starts with CT, Ultrasound, lab work, possible biopsies, PET scans, and who knows what else…

    sometimes i feel so lucky because i have thyroid cancer, so i havent lost my hair or gone through chemo, but then i get pissed, because i will probably have to have surgery multiple times (have already had two). i know it could be worse, but if someone says “well you have the best kind of cancer if you’re going to get cancer” i feel like i will scream…it still screws with my life and my plans. in the mean time i just pretend like it’s not there, and tell people i’m fine…which probably isnt the best idea, but it feels easier than dealing with all of the questions.

    so i continue to live in limbo…

  10. Kairol Rosenthal Says:
    December 13th, 2009 at 2:45 PM

    Staci – Urgh, I’m so sorry to hear that you are dealing with ongoing thyroid cancer. I can relate to everything you wrote. My cancer came back quite soon after my wedding as well. Yes, it is great that your life and disease are not worse than they are but still, that doesn’t erase the fact that cancer sucks, illness, surgery, putting your life on hold, worry – it all stinks and nobody should have to go through what you are going through. I agree that telling people you are fine is sometimes the best solution for the situation you are in, but I hope you also have some great support where you can just be and feel the way you need to in order to get through it all.

    Thinking of you,

  11. Kat Says:
    December 15th, 2009 at 1:40 AM

    Kairol – OMG. I just stumbled upon your blog after reading your article in the NY Times. All your entries are spot on! Thank you thank you thank you for your entries. They are so uplifting. It’s been 8 months since my TT and 6 months since RAI. I had my family around me when I went through surgery and treatment. It was actually a very happy time to have family around and it really kept my mind from dwelling on the fact I had cancer.

    As to this entry of yours, I definitely feel the same way you did. Now that I’m in remission and I’m trying to get back to my regular routine, it’s a mind game. I always always find myself asking – WHAT NOW? What do I do with my life now?

    I still don’t know what to do. It’s like I’m picking up the pieces. Slowly.

    I try to stay positive. Most days I am! But there are days that I’m really down and lost as to what to do with my life at 27.

  12. Kairol Rosenthal Says:
    December 15th, 2009 at 1:53 AM

    Kat – I’m glad you found my blog. I hear you loud and clear. When I interviewed patients for my book, it was such a relief to hear how many people struggled with this period of cancer and that I was not alone. It is great to stay positive, but also good to have down times where you can let yourself feel the enormity of what has happened and how hard it is to feel this lost. Yep, I was 27 when I was going through the big weird void too!
    Hang in there.

  13. Marianna Says:
    February 18th, 2010 at 4:30 AM

    Thank you so much! I have been feeling like I’m just being lazy by not being able to do things that I know I should be doing- like going back to work- or even fun things like going out with my friends or going to a museum or for a stroll. Of course when I express these feelings to my friends they are smart enough to remind me that I’m recovering from cancer! Maybe because everybody keeps saying that thyroid cancer is not life threatening, I felt that it was not as serious as other cancers, and so I didn’t have the ‘right’ in a way to let it effect me so much. I feel like all I can do is stay at home and work on personal projects. You are right that it was worse after the therapy. I wasn’t this bad after the actual operation. Thanks again- it’s always wonderful to know that you’re not the only one!

  14. Nikki Says:
    March 31st, 2010 at 5:15 PM

    I am 43 and was diagnosed last week with Follicular Thyroid Cancer. I feel like I’m walking in a different world-almost in slow motion. The prognosis for me is good and for that I am so thankful especially after reading some of the posts. I will be starting my RAI treatment in a few weeks and will be isolated for 5 days…time for some soul searching! So happy I found this site even though I am just a tad older than 30 years. ; )
    My father was my inspiration…he passed away from Bladder Cancer 5 years ago this past Dec 12th. He was a brave and loving man.
    God Bless all of you on the journey you are on.
    Prayers for your peace!

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