Saturday, April 3, 2010

Hermit Crab

Today I just want to unzip my skin, step out, and find a new body to crawl into. I wish I could be like a hermit crab. I've outgrown this shell and I want out. out. out. Let the real me escape and let me find an exquisite new, strong and welcoming shell.

I'm feeling defeated and helpless and for the first time I'm feeling very, very scared. I woke up so angry once I went through the usual "coming back to my reality" routine. I couldn't snap out of it.

I went into the bathroom and ripped off the dressing from my catheter placement leaving the skin around my neck red and raw and revealing blood blisters in addition to the pulsing point of entry. My neck still feels bruised and tender but I couldn't stand the constant tug of the choking tape any longer so into the garbage it went along with the browned and bloodied gauze.

Then I just started crying at my reflection in the mirror. Shivering, hovering crying looking at these new hash marks, at the pink skin of my other scars, especially the one above my port that is spreading wider and wider by the day. My eyebrows and eyelashes are starting to thin and I fear it won't be long until they, too, are gone.

I desperately, desperately miss what I used to look like. I look at my wedding pictures and see a strong, beautiful woman and now I look at my body and it's totally different. It's heavier and saggier. The tone I used to have is gone and my skin is covered in scattered brown slashes revealing the chemo-burnt tissue below it. I know these things don't matter. I know it's trivial and vain, but today I hate my face, my body, my bald head. I want to slice off my skin to crawl out of my own body and find one that's pristine with no drugs, no cancer, no wounds.

I slammed a few doors and then made it downstairs only to discover online that a 12-year-old boy with down syndrome that I've never met, but have been thinking about every day had died. Died from complications from the treatment for the leukemia he'd been diagnosed just a short time ago. I've felt his spirit since my mom told me about this big-hearted young son of her co-worker who loved spider man. His father told my mother that every night when they would do their bedtime routine and it was time for prayers, he would say: "We have to pray for that girl that's sick - the one whose mom you work with." And they would pray for me every night. Me, this person that he never met but wanted me to get better. When I found out he was at CCMC receiving chemotherapy and had been diagnosed with leukemia I started praying back to him. But today, his short life is over and it absolutely breaks my heart.

I was so angry about him, about me, about everyone that ever has to go through this and I'm so worried that I'm tapped out of my own strength and that I have nowhere to turn. I literally buckled at the knees and broke down on the kitchen floor choking and heaving. Craig tried to console me but I only pushed him away. When I heard the vacuum running and I knew he couldn't hear me I screamed and screamed "What the fuck did I ever do? Nothing! Nothing!" and kicked the wall with the bottoms of my feet like I was having a toddler temper tantrum.

I'm not one to get angry, and I'm not one to feel sorry for myself, but this morning I just couldn't take it anymore. I physically feel great, but sometimes, it's when I feel good that I'm most emotionally unstable because I get this taste that I'm back to my old self but realize that I have a long, fucking way to go. I realize that the hardest part hasn't even started yet. And, the hardest part of all, I realize that it might not work, just like the first rounds of chemo didn't. I realize that I, too, could die from this and get so overwhelmed with that weight and the worry of what the hell I can do about it (anything?) and about how the hell I am supposed to know what I should be accomplishing during what could be the last few months of my life.

I know that the answer is not crawling around on the floor crying about it, though I think I needed a good cry/scream/swear session. I'm done now, and it's time for a bike ride in the sun so I can burn some of this anger and anxiety seething within me.


  1. Karin, when I look at your pictures I see an even Stronger, more Beautiful Woman, inside and out. Ready to do all it takes to rid her shell of this Cancer and move on with her life. You deserve to cry, scream, curse and even slam every door in your house,Tantrums are allowed! I hope the bike ride helps. Lynn

  2. OK You have been strong---maybe too strong for your own good--the fact of the matter is that you are young and strong---the little boy that you knew was needed in heaven to console old people---but you have a cureable disease and you will beat it and feel great again---and you are as beautiful as your wedding day!!!!! xoxoBev & Blake

  3. do you remember the time you gave your hermit crab a bath and he slipped out of his house and could not get back in!? your house will always be there for you- your inner strength will keep it together and although it may sag- which I don't see and have some scars which I don't notice cause your smile is so big-you will be able to stay in your house, make some needed improvements and then go on- to build a bigger and stronger house- it's ok to yell and scream and get mad- we don't expect you to be mary sunshine all the time! Love ya

  4. Love you big sis- sorry u had a bad day today.. I'm looking forward to seein you tomorrow for happy Easter!!! And just so u know I'll always be jelous of how beautiful you are in so many ways- few people could pull off such a cute little head!!! Love you! And scream as much as u need to!! Doesn't it feel good!? Maybe now you will understand why I've always been so loud!! Haha- sleep well!!! See u tomorrow! Muah :)

  5. There is no doubt about it - you exhibit a rawness about you - a delicateness, a tenderness - it is a beautiful thing to see the simplicity of yourself - yet so threatening and vulnerable at the same time.
    Your 'wedding self' was so carefully put together - the dress, the jewelry, the make-up, the hairdo - But now your self is so exposed, so raw, so vulnerable - and yet you show a beauty, a strength, that surpasses the superficial beauty of your 'wedding self'
    Your husband tries to help, but he runs a machine to 'leave you be' as you momentarily and necessarily run amok Your system needs to go over to the tantrum side here and there to survive - and that is what you are doing and doing it mighty finely I do say!
    ah the Nuances of a Lovely, Fierce-fighting Charisma

  6. All that can be said, has been said,and beautifully, in the previous posts-so all I can say is heed them. Let off steam when you have to,it's a good release, but hold on to your precious self, and and know that there are so many pulling for you,you will certainly get through this. You will be well again, and you will look back on this. Sending wishes for a blessed Easter to you and your family. Love Irene

  7. a beautiful person like you brings out all of these loving wishes for you. Take heart and feel our strength when you are low, we will carry you with our prayers. Screaming is very therapeutic, encourage Craig to to it too.

  8. you are more than entitled to a sympathy day. sorry we haven't commented in a while, but we always think of you and send so much love your way. we are at a loss for words as we can no longer relate to your journey. We can recognize your beauty as a person and the strength required for your road ahead and past. you are gorgeous. yes you are!

  9. i feel you.