Worry

Warning: I’m about to barf emotional baggage.

One month until surgery and I’m wasting it feeling sorry for myself. I started back at work yesterday, with a bit of crying on the drive there. I’ve been able to bottle things up a bit and make it through the day. I wonder if I should be there, if I should be spending my last bag-free days working, but I don’t know what I’d do with myself at home. I know I wouldn’t accomplish as much as I do at work. When I’m at home I cry. I search blogs for anyone who has a colostomy bag and isn’t depressed and suffering. I did find one girl that was happier after the bag, but that was because it was the end to a lot of pain from crohn’s disease. The rest of what I find is depression, discomfort, and a pain, even from those who seem otherwise positive about life.

What I’m up against is big. It’s not my self-esteem that suffers. I don’t care in the least how the bag will look. I care very little about how it might affect my wardrobe. What others think of me doesn’t cross my mind. If it does, it’s thoughts of how loving and caring everyone has been. I’m even happy to sport a wicked huge scar on my belly. What bothers me is that I pride myself on my loyalty and dependability, and the fact that the bag will make me late to work, or call in sick upsets me. To miss a portrait shoot because I’m cleaning poop off myself and the floor and my clothes is a depressing thought. Not so much the poop part, but the part where I prove to be unreliable.

Next up,Β  I sleep on my stomach. The bag has been reported to affect a lot of people’s ability to get a good night’s sleep, even if just from the anxiety of possibly rolling onto it and having an accident. I’ve seen reports of people permanently sleeping in recliners and on sofa’s so that they can feel safe when they sleep. I’m a heavy sleeper that moves around a lot.Β  I worry for what this will do to my sleep. How many days will I be miserable from lack of a good, comfortable rest?

Worst of all, I have sensitive skin. I cut tags off my clothes because they drive me insane. Just one tiny irritation on my skin, a twisted sock seem, or a loose thread tickling my skin is torture. I don’t wear makeup because even the hypoallergenic stuff bothers me. Dead skin is always immediately removed. Bumps are obsessively scratched off, even if it means I bleed. I struggle with soaps and lotions making me itchy. I’ve never had a day I wasn’t itchy. Colostomy bags are held on by glue, that will most definitely bother my skin. Changing the bags involves peeling up the glue and maybe some skin with it.

I think about always living with this irritation to my skin and I hang my head and cry. Mark asked me yesterday if I’ve ever felt this bad before. The answer is, I’ve been sadder, I’ve had worse emotional stress, but I’ve never felt so hopeless. I’ll adjust. This isn’t the first time I’ve had to adjust. I gave up running and hiking and my love of dance when my knees died. I found a new life and happiness within my limitations, and that’s saying a lot knowing how in love I was with dance. The way I express myself through digital art now, does not even compare to how I felt when I danced. In fact, it’s part of the haunting and darkness that shows up in my art, because art will never satisfy me the way dance did. I’ll adjust again. I say I will, but I only say that based on the fact that I’ve done it before, and not because I feel hope. It’s like I’m trying to comfort myself with math. It feels cold.

The root of all the sadness, is the fact that my cancer might be gone. I might be stuck with a bag I never needed. I want my sense of humor back.

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About Kamina Kapow

I have dimples and friends

13 responses to “Worry”

  1. becomingamazon says :

    So this might not come off right and it is fine if you delete this once you read it or unfriend me or whatever.

    I wish you could hear my voice so you would hear the caring. But I feel the need to STRONGLY say something I tried to get at in my last comment to you.

    YOU DO NOT KNOW YOUR FUTURE.

    PERIOD.

    There are all sorts of possibilities. Just as a few years ago you could never imagine having cancer, you cannot predict – NOR ACCURATELY WORRY ABOUT your future. Spending time trying to figure it out is only wasting the time you have now.

    That sounds harsh. I am sorry for it. Really, I am. But, if I had ANY idea before cancer what I would feel like during or three years afterwards, it would have seemed insurmountable. I may have made other choices that were not wise. Or maybe I would be fine without the extreme treatments, I will never know and frankly, it is not worth thinking about. I am here now following my dreams. I deal with everything else.

    A colostomy bag sounds horrible. I know it sounds horrible to the person it affects because my mother refuses to see a doctor. She is in the beginning stages of rectal cancer for which removal and a bag would be the only treatment and would not guarantee her survival. After tests every 3months she quit going – it was destroying her ability to be here now. But she cannot bear to think of the bag and all it’s problems.

    I understand your pain. Really. I understand that you don’t care about how you look and that the issue lies with how you ARE in the world. You will never be who you were before cancer again – even if you don’t get the bag. You will always worry, you will always have complications. You WILL walk in the world different. Your life IS permanently changed in ways you don’t even know yet. You never go back. You WILL adjust.

    You cannot focus on what other people’s experience is – you are not other people. You are you. And you – and your body – will do its own thing. And the internet is full of the negative stories and less full of the positive because the positive people go on to be busy with their lives……

    Maybe you don’t need the bag, maybe it is overkill, maybe I didn’t really need to have my boob cut off since the cancer was not going everywhere. I will never know and neither will you. The point is you have to do what YOU can live with in order to know you did what you needed to save your own life. Whatever that is….colostomy bag or not.

    So there it is, and I am sorry if it sounds like I am being harsh….it is said and sent with love and deep compassion and tears in my eyes……

    • clumsythinker says :

      I understand the meaning behind your words, that you don’t want me to be sad, and I appreciate that. But I have to say, you just asked me to not be myself, and that’s just not possible.

      I took the strengthsfinder test about a year ago. My biggest strength is Individualist (I understand how very different people are, and I know how very very different the same experience can be for two people.), I’m a futurist (my brain thinks in terms of what’s coming up, and I plan for it.) and Context is another of my strengths (I understand the world in terms of what has already happened to people) and another strength is Relator (I see, even through all our differences and individual experiences, that there are so many ways we are the same)
      That’s 4 out of the 5 strengths I was given, and you just asked me to turn them all off.

      Like I said, totally not upset with, because I understand that you say what you say because you care and you don’t want me to be so upset. I can appreciate that. But I see my emotional journey as exactly what has to happen. I can’t turn it off. As much as I’d like to skip the worry part of this journey, as much as I’d like to have a different brain that handles all of this in another way, I can’t.

      Just wanted to make that clear before anyone else jumps in and agrees that I ought not feel the way I do. I am who I am. I feel what I feel.

      • becomingamazon says :

        I am so sorry you heard I don’t want you to be you. That is not it at all, although if you being you means that you spend a lot of time thinking about how OTHER people do stuff then I guess I am. Be pissed, be sad, be worried. I am just suggesting that you are putting a lot on energy into researching all the BAD that MIGHT happen instead of how to go on living your life.

        I am done now.

        sorry.

  2. Jenn's Mom says :

    So many questions. Each with a b’zillion different answers. If you believe in God or a higher power, it is time to let it go. I have a poem I read to myself sometimes; I’ve had it for years. When I need it the most, it shows up in some other drawer or bottom of a purse.

    As children bring their broken toys
    With tears for us to mend
    I brought my broken dreams to God
    Because He is my friend
    But then instead of leaving Him
    In peace to work alone
    I hung around and tried to help
    With ways that were my own
    At last I snatched them back and cried,
    “How can you be so slow”?
    “My child, He said, what could I do?
    You never did let go.”

    So try it, Let Go and Let God take this one on for you and rest in faith that all will be well, no matter what happens.

    • clumsythinker says :

      thanks for sharing. I can appreciate the concept of letting go of emotions.

      first I have to worry. then I have to experience. then i can let go. all things in their time. letting go of emotions prematurely has proven to be unhealthy for me. I gotta face it head on and let each feeling exist.

      hugs.

  3. Markis Melarkis says :

    I love you, poop bag and all! And I know your mom can find a great deal on recliners on craig’s list πŸ˜‰ You will find your humor again. Maybe it’s with jesus behind the couch.

  4. adayinthelifeofamiddleagewoman says :

    I think that sometimes, you just have to let things be what they are. Emotions that is. You started out with “Warning: I’m about to barf emotional baggage”. Why does one barf? Because our body needs to get rid of something that’s negatively impacting us. No one barfs because of having eaten something good (unless they ate too much of it, and then it’s bad anyway). No one barfs because they’re feeling great.
    We barf when we need to purge some darkness inside of us.
    So barf.
    Barfing is good in the longrun.
    It’s also just fine to allow yourself to lounge in your fears and negative emotions. We spend so much time fighting fear, or fighting the enemies our minds create for us…..(and I’m writing this as much for you as I am for me) that we forget to face it or embrace it. I need to remind myself often to look at my fears in the face, and put them individually into perspective. That takes examination and introspection (is that a real word?) which can only be achieved by staying in the feeling, in the moment, for a while and getting to know it.
    Then, when you face it, that fear that emotion suddenly is smaller and it’s much easier to kick its ass.

    • clumsythinker says :

      Oh i am all too familiar with using barfing as a metaphor for emotions. I think it’s my most commonly used metaphor on the subject. My placement of it at the beginning of the post was deliberate. I knew what I was saying. But in this case, it’s not just a simple barf and it’s out of my system. This is too much bigger than that. This is like, barf, temporary relief, barf again, and so on.

      I’m glad you’re on board for my emotional bulimia. πŸ™‚

  5. Rob says :

    Hi,

    I want to say having a bag is tough but You can get used to it, my wife had a permanent one with urine and stool going in. Yes we had few accidents and was not pleasant… but with Humour we got through it. Many times we laughed about it, I suppose that was way we coped with it and got used to it. The bag did not make my wife less beautiful and I counted a privledge in changing the bag and when You get into a routine, it worked out well.
    She also was a person who liked to toss and turn, but again she learnt to sleep with it and had good rest.
    In ideal world, wish you and my wife did not have to have bag along with million of others … but life is all about ajusting with the good and the bad.

    If I can help with any advice, just let me know ..

    Wishing You and Family all the Very Best

    Rob

  6. cardassianvole says :

    I don’t have anything useful to say, but I read every word. And I care. And I don’t really know if warm loving energy can travel many hundreds of miles but if it can, I hope it gets there to you. At the same time, I must say this: what is being asked of you, should have to be asked of no person. I honestly can’t imagine someone NOT feeling like they are coming apart at the effing seams.
    Anyway, I babbled more than I intended. xoxo

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