December 09, 2005

Deliberate

I have been wondering lately if other cancer survivors (or those living with cancer) think of their lives in terms of 'before' and 'after?'

[aside] And holy shit, I have cancer. That is still so weird to me.

I used to acknowledge my life that way when I herniated the two discs in my lower spine. Before I was injured and after. Before I could move furniture if I wanted, support myself and Zoe, work out until I was near dead, and the simply lovely task of holding my child in my arms.

Then there was after. Living on vicodan. Waking up like Nick Nolte in North Dallas Forty (sans the marijuana and beer). Feeling useless. Physical therapy and missing work and constant pain. Explaining to Zoe why I couldn't carry her anymore. "Mommy's ouchie back." Every move I made was a deliberate act so as not to re-injure myself.

Now I have a whole new set of terms.

Before I had some fatigue, diabetes meds, yet I had freedom and independence. I worked. I was an earner. Every two weeks I saw that deposit in my bank account. I had a social life - meeting friends for dinner or a movie or a party. The possiblity of an actual date with an actual boy. I took care of my child and loved her and nurtured her. I could just stare at her sleeping in awesome amazement. I was mommy and I was there for her.

Now I feel like a child. I can't drive. I need naps. I don't sleep enough. I carry around a huge ziploc bag of meds - anti-this' and anti-thats. I rarely see my friends, and need to avoid crowds/germs/kids. I have multiple hospital visits every week. And I'm OCD about getting sick or coming down with another fever. I can't think about working. And just when I start to feel normal again, I get this wave of tiredness that wipes me out. Everything hinges on those changing blood counts. And I'm bald. I'm BALD. I can't imagine going on an actual date (what, is my mom going to drive me?), and I can't imagine being near an actual dude.

I feel so out of touch with my child. I know she misses me, but I know I miss her more. I hate it that I'm missing her learning to read. Hate. That. I hate not seeing her work that she brings home from school. She's sick, I can't be there to comfort her. I miss brushing her hair and seeing her laugh. Taking her places and playing with her. I miss picking out her clothes for school and seeing how proud she is to accomplish her schoolwork. I feel like I'm missing out on so much of her life, yet I know that it's not forever.

Kids are resilient. She will be just fine. She's doing well. Buy her a goldfish. It's harder on you than it is on her. She's so lucky to have playmates and siblings and it's good for her to learn to share. Blahzeblah. And a blah blah.

But I'm not there. No matter how resilient she is, it won't change that fact. And God is the only one that knows if I will be there to see the rest of her life. I could be the strongest, most kicking ass cancer patient ever and yet, let's face it, I still might die.

It's so hard for me because at this time all I want to do is be with my child, yet that's one of the last things I'm able to do. I'm scared. I'm lonely. And all I want to do is see her face. To know, for a fact, not secondhand info, that she really is ok. And the only way to know this isn't seeing her once a week for a few hours, but to be there for her. To be her mommy, in person, again.

This after just sucks it. I want it to be over. There is no physical therapy for this kind of pain. And I don't like to talk about it, but it's just not going away.

I know I can do this, but it still fucking hurts.

And this, folks, is what my mom would call piling shit on my head. Must. Snap. Out of it! There is no crying in baseball.

Posted by debutaunt at December 9, 2005 06:30 AM
Comments

Your mom's right, but so are you. You need to say this stuff and get it out, and acknowledge it, and hold it up and look at how it sucks six times to Sunday, so you can move on to the next thing (bec there's always a next thing). Many hugs.

You can do this.

Posted by: Islay Girl at December 9, 2005 09:46 AM

I had a couple of mornings, post-diagnosis, where I woke up, kept my eyes screwed shut, and thought "this isn't real, this isn't real, this isn't real." but it was as real as it could get.

It is very lonely and boring when you are at home, with your counts in the toilet. And after the initial diagnosis, lots of people stop calling, just when you really could use a conversation, even if only a short one.
The whole thing really sucks. I don't know how I'd handle being away from my kids.

Posted by: laurel at December 9, 2005 10:00 AM

While I am a "cancer survivor", breast, though I don't know what that means, exactly, I didn't have to go through the misery you're going through. I do remember feeling that there was a delineation of time when "treatment", ie., surgery/radiation/stomach shots of zoladex were through. But, it's never "through." It will always be with me, because there's always follow up. However, you WILL get to the point when you don't think about it every day and it doesn't define what you do. I still take meds, for another two years and probably different stuff thereafter once this batch is finished.
You're entirely enmeshed in it right now. There will be a fine sunny, non-freezing, day when you'll have some normalcy again.

In the meantime, we're all here with you. Keep venting!

Posted by: Kim at December 9, 2005 10:02 AM

I can't pretend to imagine what you are going through and like the others I think it's a good thing you can express your fears here on this blog. Because if not here then where...? This is what we lurkers in cyberspace(does anyone use this word anymore ;) are here for, to listen.

I am not a medical practioner but I do believe strongly in "hope". I have full hope you will recover and you and your daughter one day soon will be back together and share a bond even stronger and sweeter for your illness.

Posted by: lynne at December 9, 2005 11:10 AM

I love you Deb. I get so engrossed in your posts recently. I feel for you. I am praying that the sorrow and sadness that you are feeling now fades to black and the sun comes up bright as ever, warming your soul from the inside out. You are Uma. And as a side note, there is no crying in baseball, but there sure as hell is in dodgeball! It's ok to cry, I won't tell nobody.

Posted by: Rachel in AK at December 9, 2005 12:54 PM

Just think how sweet life will be when this is all over. And it will be over. You will regrow your hair, love Zoe with even greater zeal and be stronger than ever before. Cancer sucks the big one but hey, what doesn't kill us makes us stronger.

Posted by: Debbie at December 9, 2005 01:10 PM

I don't have cancer, but I do have chronic illness and I do think of my life in terms of before and after - it's just like a job - when I was working there and now i'm here. But now that I'm disabled, my job is my illness - researching, dr appts, support groups, making sure my health is my priority and making sure I'm well. I try to do my job well most of the time, but some days, I do a lousy job! Your job now Deb - is to take that bag of meds, keep yourself non feverish, go to those doc appts, let others drive you, forget about boys, experience being bald, and your paycheck - is to see Zoe for a brief time each week, and to live a lifetime with her once you kick ass at your job.
Sometimes our jobs make us work overtime and our jobs suck. We all hate our jobs at some time in our life. It's just that for you and other cancer patients and the other chronically ill people out there our job is our heath and to get well.
But it's ok to feel like you do some days, cause it sucks. It really does. But you have to find a point when you stop it and get on with doing your job well. Because that paycheck and that payoff will be worth it.

hugs,
Linda

Posted by: linda at December 9, 2005 01:25 PM

(((hugs)))

Posted by: Crazy Lady at December 9, 2005 04:05 PM

Yep, I also think of life in terms of before and after the big "C". I am also living by the counts, trying to stay well, fighting off fevers, and extremely fatigued. My kids aren't really aware of how "sick" mom is right now so for this I am thankful. As a mom you feel like you aren't doing your job, but believe me getting well is your job right now. Cry to your hearts content, I do and it does help.
Deb

Posted by: DEBRA at December 9, 2005 06:05 PM

I was without my two children for four months while I was very ill. My younger son was only eight months old. It sucks big time, but I am here to tell you that when this is all over you can and will make up for lost time. I know how much you're hurting and I am sending good thoughts your way.

Posted by: DaisyNukem at December 9, 2005 09:03 PM

I am not anywhere near in the same boat as you, but don't we all view our lives post- and pre- major events?

In your case, when you overcome this and start living post-cancer, rather than pre- and during, you'll have the benefit of being new.

I remember reading Lance Armstrong's book and a section where a fellow cancer survivor e-mailed him and said "You're one of the lucky ones." Your post about looking at cancer pre- and post- helped me explain what this person meant.

Posted by: hamel at December 9, 2005 10:40 PM