Saturday, July 18, 2009

I should be...

...writing down final questions for both doctor teams so I can choose. I actually have two mastectomies booked, one with each team. Clearly one needs to be canceled. But I can't seem to concentrate, can't seem to focus.


I should be preparing in other my bedroom for one. I'll be spending ALOT of time in here and it's a wreck. It's always the messiest room in the house. We can just close the door and forget it if someone rings the doorbell, you know? My house is a renovated cottage, kitchen, living room, dining room & two bedrooms -- 1 bathroom. Other than the basement, that's it. We're not going to talk about the basement.


I should be getting stuff ready for Meggie's 8th birthday. The timing here is awkward, with one mastectomy I'll be just out of the hospital and if I choose the other I'll be going in practically the next day. Neither is good. I don't have enough stuff for her. The older she gets the harder it is to shop for her. She's not into clothes, not into dolls, loves all things animals and adores caterpillars/butterflies. We got her a new bike -- she didn't ask for it but she's outgrown her old one. I got her some cool plush thing that turns back & forth into a butterfly/caterpillar. I'll also be ordering live caterpillars that you can raise to butterflies...but we've done it before and she needs help caring for them so she'll have to wait until I'm home from the hospital and things settle down. Other than that I'm drawing a blank -- she's not sure what she wants. Poor kid, she probably just wants her Mama back.

And that brings me to what I'm doing instead of all the things I should be doing. I'm crying, I'm panicking, I'm a deer in headlights.

I was rolling around on the bed today with Daniel (his favorite thing to do lately) and it hit me -- I may not be able to do this for a long, LONG time. Maybe so long that he'll have outgrown wanting to, maybe not ever. I'm not just having major surgery. Because of HOW they do the surgery I could be forever changed in some of my abilities. They take abdominal muscle, nerves are cut, blood vessels are rerouted. I may experience permanent changes in how I'm able to do basic things. I've heard horror stories, too.

So I started to cry and haven't really stopped. Here comes the pity party, don't say I didn't warn you...

I'm only 45, young in breast cancer circles. But I'm an older mom...that's not news to me of course. But until now it was just on paper. I never felt too old to be the mother of young children. Sure, I wish I could have had them when I first started trying...back in my early thirties. But that they are here at all is miracle enough and I never looked that gift horse in the mouth. I figured losing all that weight, quitting smoking, becomming a vegan -- all of it gave me a bit of extra insurance towards making up for the few years behind I was in terms of maternity.

Guess I was wrong.

I'm terrified of being some kind of invalid...or even if not quite that extreme, of just being limited in a way I never was before. I want to be an active, healthy mother. I'm too damn young to face this...not yet. That's what I keep thinking...not yet. I wake up with those words on my lips. Not yet to cancer. Not yet to losing a body part, most of all please...not yet to leaving my children behind because I fail to beat this. Not yet damn it. Please.

Which leads me to the last "should". I know on some level I should be happier, relieved, grateful even that I have potentially early stage cancer and a chance at a better surgery than the former mastectomy I was scheduled for. I worked hard to get this better deal. And I was happy...really, okay, I was some form of happy for a day or so. But that's worn off now and I'm just plain scared and sad. Deeply.

Suddenly keeping my nipple seems inconsequential compared to everything else. It won't feel anything anyway...I may be permanently numb in my entire breast, my armpit, part of my arm, my entire abdomen. It's hard to imagine. I think I haven't been imagining any of it -- I focused on that nipple still being denial, like maybe I thought somehow I'd be different and it would be in some way magically close to the same as it was. But nothing is ever going to be the same as it was before. Nothing.

I will once again have to find a new normal. I've done it before. Believe me, more than a few times. It sucks. I'm sad to say goodbye to my old normal. It was nice. I just want it to be nice again.

I should be reassured by all the times I've found that new normal again when I thought it was impossible. But I'm not. Instead I'm wondering if this time I won't be able to do it. I think that is the real fear at the bottom of it all. That this time I've been beat. Today I feel beaten. I should be stronger -- I'm a mom, my kids need me to be strong. But instead today I'm just me, alone, and I'm not anything I should be but sad.


JJ said...

Hugs to you Kayleigh. I've had those same exact thoughts and fears. I am 42. My daughter was 2 when I had my mastectomy and reconstruction. I was afraid I was unable to rock her in my lap ever again. I remember coming home from surgery and her desperate to climb on me snuggle. I was away from home for two weeks and we missed each other so. It hurt like hell having her lay on my stomach but it was also the best feeling in the world.

Your boy will still want to cuddle, especially after having to be gentle with you for a while.

My body was ripped apart and put back together. I had an infection which causes some complications. It was not an easy thing by any means. Actually, it was the most pain I have ever experienced. BUT, it passed and my body is back and cancer free. You will survive and your new normal will be even better than before. It will just be different.

JJ said...

P.S., I didn't spend too much time in my bedroom for the first month. I slept sitting up in a recliner. It was too tough getting out of my bed. Don't rule out making a little life for yourself on the couch for a while.

Kayleigh said...

Oh JJ, thank you, thank you, thank you! I so *NEEDED* to hear from a mom like you that can tell me it might eventually be okay. I am sooooo worried I won't be able to get back to anything like the old mother my kids know/need. I mean, I know it will be different, I guess I'm just trying to imagine HOW different....there's so much to lose, such precious time in the kids lives. I know you know what I mean.

My son is two now as well.

Oh, and we are actually renting a recliner/lift chair thing because I've heard it's hard to get in & out of bed. But it has to go in the bedroom...afraid it's not safe for the little guy to have total access to it. But thank you for the tip :) Thank you for the post. Just a big FAT thank you for all of it!

Jean said...

Kayleigh, I don't have any advice, tips, suggestions. Just my deepest and sincere wishes, and positive thoughts are winging their way to you. xxx

JJ said...

Check out this post.

It's from the night I came home from the hospital. This is what it's all about.

Even tho I found it difficult to believe others when they said it, things will get better.

La Belette Rouge said...

It is so great to see comments here from people who know what you are going through. I am so happy your circle of support continues to expand. Like NSM, I have no advice. But, I have lots of love, good thoughts and hugs for you. xoxo

WendyB said...

Just sending along my good wishes.

Imogen Lamport, AICI CIP said...

Wow - I can only imagine how terrible this all is for you - I checked my breasts in the shower this morning for lumps - something I'm bad at doing, because of you.

It's going to be hard - no doubt about that.

I'm wishing you so much luck.