venturing into the real world

I haven’t been feeling very much like talking or thinking or writing lately. If I ignore how uncomfortable and strange my body feels and instead fill my mind with walks, T.V. shows, books, and crafts, maybe I will feel less pain. Maybe I will feel better faster. If I think about it too much, the fact that i’ve been at this for a month now and I still feel crappy, I start to frown. And when I start to frown, my mom tells me I don’t ever smile anymore, which makes me frown more… why should I smile? There is almost nothing about recovering from surgery that makes me want to smile.

I can’t stay shut in the house forever, though, frowning and not talking to anyone. For one thing, walking is usually more comfortable than sitting, and anything is more comfortable than sleeping. For another, i’m living with my family–my sister is acting as my faithful around-the-clock nurse, and my parents help out in any way they can. I can ignore as many phone calls and emails and text messages as I want–what do I have to say to anyone, anyway? Everyone is going about their life while mine is on hold. The only thing that changes with me is the minutia of day-to-day recovery. But I can’t ignore my family. I can’t shut everything out. And it doesn’t actually help, anyway.

As much as I don’t want to think about it, as much as I want to shut myself in my room and not come out ’til I can walk a mile without feeling like I’m going to collapse and sleep through the night, what helps is going out into the real world. What helps is interacting with my neighbors, my sisters, my parents, and my boyfriend. My body may be uncomfortable and foreign to me, but in the real world, no one really cares.

My first day at home after I got out of the hospital I was wearing my largest pajama bottoms (to accommodate my extra pounds), which happen to be fuzzy black pants with white polka dots, and running shoes (because none of my other shoes fit me), and a jacket. I asked my sister if it was OK for me to go outside like that for our morning walk and she said, “It’s encouraged.” Last weekend, after a very long trip to the emergency room (more about that later), she similarly encouraged me, though slightly more disapprovingly, to go outside for a walk in my Halloween pajama bottoms. As you might imagine, they are not currently in season, nor are they attractive. On both occasions we successfully made a few loops around the neighborhood without anyone calling the police.

I think these moments when I can get outside and maybe even forget for a second that i’m sick help even more than all the encouragement my family and my friends can muster. My boyfriend came to visit this past weekend and he kept saying, “Look at you! You are doing so great. A few weeks ago you could barely keep your eyes open and you couldn’t lift your head off the pillow. Now you’re walking around and eating well and doing almost everything on your own.” Yes. All of these things are true. But how much longer til I can sleep comfortably? How much longer til I can go out somewhere and not need to sit on the couch for the rest of the day to recover? It’s hard for me to embrace how much progress i’ve made when I have so much progress left to make. As i’m tapering off on my pain medication and the haze it puts me in i’m becoming more aware of how far I have to go until i’m back to where I was before the surgery–if I ever get there. I will get there–eventually.

I have since upgraded my wardrobe to a slightly more socially acceptable sweatpants and baggy T-shirts, and I have upgraded my outings to the beach, to longer “nature walks” around the neighborhood, and thrift stores, and supermarkets, and coffee shops, and restaurants. I get extraordinarily tired, but at least I get out of the house. And sometimes, I can forget how uncomfortable I am, and I even catch myself smiling. Like this weekend, sitting on the beach, holding an ice cream cone in one hand and my boyfriend’s hand in my other. It’s not really my style to frown all the time.

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12 Responses to venturing into the real world

  1. Reblogged this on manversuscancer and commented:
    Even though we’ve never met in person, this post is a mirror image of how I felt when I arrived home after my final 22 day hospital stay after my final chemotherapy treatment. Lindsey tells the truth – once Chemotherapy is finished you end one journey but enter another realm of the unknown – life as a recovering cancer survivor.

  2. Worrywart says:

    Your family sounds great.

  3. thandilocks says:

    So so glad you have so much support to see you through this long recovery period. I really do hope with you that you WILL feel better than you currently do. Sometimes when people can’t SEE the discomfort, it’s easy for them to assume you’re in a better state than you actually are in. Here’s hoping for more strength, energy, alertness,less pain and a respite from the ravages of silly cancer.

  4. Lindsay,

    It is perfectly fine to not feel like writing, or thinking or talking or smiling at this point in your journey of recovery. I laid in bed for weeks after I finished my six months of surgery + chemotherapy, surrounded by my two cats and four foster rescue kittens who have since been placed in new homes. I didn’t pick up my course readers or send out volumes of emails. It took much prodding from my wife and even my mother to get me out of bed and motivated to take even a simple three block walk around our neighborhood. So little is said to a cancer patient about the uncertainty that appears in one’s life when the fog of treatment recedes and is replace by the murkiness of the recovery period. Just like an off-trail hike in a forrest, everyone’s path can be different with unanticipated pitfalls and rewards along the way. Especially if you don’t have someone walking ahead of you clearing the brush away.

    I think you are SO doing the right thing by getting out of the house. My feeling is that for anyone going through or recovering from cancer, whatever makes you feel happy (and is generally legal) is the right thing to do. It sounds like you and I share the feeling that leaving the environment I was assigned to reside in gave you sense of hope, freedom and independence. This was true for me when I left my hospital ward and was able to drag my IV pole around different parts of the hospital; and when I went beyond the bounds of the hostpital to walk with my IV poll in the surrounding residential neighborhood. Of course, that last example was just a theoretical occurrence ;) Both experiences helped me feel that I can move beyond my new ,confined world. Perhaps not as much I did before cancer, but at least beyond the confines of where I was expected to stay. I’m glad to hear that sitting on the beach with an ice cream cone in one hand and your boyfriend’s hand in the other brings a smile to your face. May you have many more days like this weekend.

    Kenya Wheeler, AICP @kenyaw

    On Mon, Mar 4, 2013 at 10:42 PM, i am a liver

  5. Saso says:

    No matter how you may feel, your writing reads like a smile. You’re doing great!

  6. Jill says:

    Glad you recognize the increments, even though it is the slowest process. Your body had major trauma, so it takes a long time to forget….in the meantime, funky pajama bottoms, thrift stores, ice cream, wonderful boyfriend/family…pockets of pleasure while you recover. Sending you hugs.

  7. Matt says:

    I am sorry to hear that you are suffering.

    It is a very difficult road that you are walking…but it is what it is.

    There is a little book that I have read for years until I have basically committed it to memory.

    One of the chapters speaks about persistence.

    It has sustained me through some very dark nights.

    Here is one of the paragraphs that I have always found uplifting.

    “I will never consider defeat & I will remove from my vocabulary such words & phrases as quit, cannot, unable, impossible, out of the question, improbable, failure, unworkable, hopeless & retreat..for they are the words of fools.”

    “I will avoid despair..but if this disease of the mind should infect me, then I will work on in despair. I will toil & endure. i will ignore the obstacles at my feet & keep my eyes on the goals
    above my head..for I know that where dry desert ends..green grass grows.”

    Always take another step, Lindsey. And if that is of no avail then take another & another.

    One step at a time is not that difficult.

    The book that I speak of is called “The Greatest Salesman In the World” by Og Mandino.

    Do not be mislead by the title. It is a very powerful little book that speaks of the traits one needs to succeed in any endeavor.

    I hope that this day is kind to you.

    Blessings to you & family,

    Matt

  8. paula says:

    Thanks so much for giving us an update on your journey. I’m glad to read that everyday is getting a little better. I feel a lot like your sister. I’m one too. Last year, my sister went through extensive hospital stays and surgeries and I was with her pretty much “around the clock”. Now, she is feeling so much better. She is still getting check-ups every three months and may need have more intervention, and I will gladly be there for her again should the need arise. I’ll confess though that she did feel somewhat like a hostage at times because she could not be alone, being on so much medication, so no one would blame you if you had those thoughts. God Bless you and your family for a continued recovery and healing!

  9. Cathy says:

    Lindsey…I could feel that smile miles away…could have been the sunshine from the beach..or the happiness of feeling a hand in yours. I think it was both. Hope you picked a good flavor to savor…For you certainly picked a moment to savor and share.
    Sending hugs your way….

  10. AshMac says:

    Praying for you.

  11. Kelly Bruhn says:

    Lindsey!!! You make me smile! Your words on your journey are so inspiring. You truly have a gift with words and I am so glad you are deciding to share your gift with us. My boys “beg” (actually cry) for me to allow them to stay in pajamas all day. They say the soft pants and the soft shirts make them feel free and alive. They say that they are just more comfortable which ultimately allows them to play harder and better! I think they have a good point. Keep on doing what your are doing… walk in those PJ’s … feel the sunshine … and allow yourself the time you need to rest. You have made so much progress in a short period of time.
    You really do have “super power” strength.

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