June 26, 2013

3 Years--Mind

This is where I get to walk through the thinking that has churned around in my brain for the last year.  Lots of stuff from more cancer to what I want out of life to current events.  Sometimes it's hard to separate out the mind from the spirit, so don't read too much into the home I've chosen for different things.

Well, first of all, I wish I could say that I had a day go by when I didn't remember what I went through with this diagnosis.  It would be potentially much different if I didn't look down at my chest and see the obvious every day.  It's not that I agonize over it.  It's just always there.  And that's okay, because I am now at a point where I can't fathom how to go about having boobs again.  I recently tried on my prosthetics for the first time in probably over a year, and it just changes the whole quality of my body and how I carry myself.  I kind of hate to say it, but I think I carry myself with a little more poise these days.  Basically, aside from my effing puffy arm, I am very comfortable in my skin these days.  I live in a weird in-between world where I am no longer judged by traditional standards.  Certainly not something to be jealous of given the circumstances, but it's nice in its own way.  I've already covered the physical downsides, so I won't belabor that.

As for the process of thinking itself, that is much better.  Most days.  Chemo brain is real, my friends, and it comes at a time when you think you're losing your mind anyway.  I seriously felt that my worth was diminished in my career and at home because I couldn't stay on top of my game during treatment and really for a year or 2 after that.  And I worried it would never come back!  But there are signs of a bounce--there have been a few days where everything has just been clicking and I can stay on top of or ahead of where I should be.  (Then there are the ones where I don't get anything done because I just can't focus, but they are fewer than before...)

Sometimes I think back on my thought process during diagnosis and treatment and am just sad at how far underwater I felt and how I had no plan of how I wanted to approach the fight.  I think if I asked you all, you'd say that I came across as having my shit pretty together, but man, what a joke!  I was not cut out for all that at once.  By which I'm referring to the cancer itself, the multitudes of decisions that just keep coming and coming throughout the process, parenting a baby, trying to figure out a marriage while adjusting to baby and cancer, working, trying to decide what brand of healthy lifestyle changes I wanted to pursue, the genetic part of the equation, etc. etc.  I could just never get to the point where I could become a health warrior and get super dedicated to some sort of new diet/meditation/exercise/whatever regimen, even though that feels like the direction people were encouraging me to go--out of love and good intentions.  But knowing that people like to see that new lifestyle/new attitude kind of narrative, not following it and taking charge made me feel I was letting people (and myself) down at times.  That was hard.

Not that I wasn't doing some of that stuff.  I couldn't fully adopt the approach of curling up in a ball and not dealing with life, either.  It's not in my nature to lose it and break down for too long--even if that's what I should've let myself do, I couldn't.  I just kept pushing myself and trying to maintain control of whatever I could and maintain the "normal".  Thinking about it, that's the biggest reason I chose no reconstruction when it comes down to it--the only way I could take control was to remove the parts of my body that were causing problems and not be at the mercy of a recon process that could go many different directions.  The mastectomy, the chemo, and the radiation were all necessary choices for me in my mind--the recon was not, and it was all about the bare necessities at that point.  And I was also one of the "I don't want to be a burden" types, even though that drives me nuts in other people.  I don't know any other way to have gone through the treatment and recovery because I know I was doing the best that I could, but none of it felt good--I maybe didn't have to give up a lot completely, but losing little pieces everywhere and knowing what you can't keep unchanged is enough to drive you nuts.  And to know that it was affecting people around you and they had to pick up those little pieces drives you nuts, too.

There was likely an element of PTSD involved in all of it, too--I don't necessarily go back to the full-on feelings of those moments, but there have been some times that have been close.  While so much of it was a blur, my worst moment of anguish, hands-down, was the radiation mapping appt.  I never want to feel that way again.  That was one of the few times in all of it that I would have described it as "suffering"--that's a hard word to use even now.  All of those things I wanted to keep other people from knowing, too.  At a time in my life when no one would have questioned me being scared, I still had a very hard time showing it.  Not that you can't be both brave and scared at the same time--that is a lesson I am trying to teach Olive these days.

What else do I think about?  Oh, let's see... The glaringly obvious nagging thought is recurrence.  As of this post I will magically be transported past the 3-yr window that my oncologist said was the highest risk time for me (with triple negative cancer).  I will admit, there are plenty of times I had in my head that I wasn't going to get this far.  There will always be some fatalistic element in me that expects more cancer, just like it was normal for me to think I'd get it based on family history.  And I'm sure it comes partially from my line of work--I have done some funeral planning in my head like any good hospice employee... My biggest hope in all this was to get to see Olive start kindergarten, and I'm on track to make that happen.  Then other milestones will come, but the shorter time frames have to be the approach for me.  And I don't want that to sound morbid, because it's not! It's about happiness in many things and many ways, appreciating what you have, realizing that nothing is guaranteed but that effort for things you want and value is always worth it.

It's hard to think too far ahead about Olive and her risk in all this.  I will just have to hope. The genetic piece of it is still daunting, and I get frustrated with people who don't understand HOW DIFFERENT the risk of cancer is with a BRCA1 mutation compared to the general population.  I have to say that Angelina's story going public with her choice was helpful in its own way.  When someone with access to all the resources possible also feels that the best choice to reduce risk is to remove her breasts, that should get people's attention.  (It's hard for me to get too caught up and upset about how she made reconstruction sound like the obvious route post-mastectomy--I understand boob culture in a whole new way now, and maintaining her image is part of doing the work she wants.)

[Speaking of boob culture, I'm only going to say this once, but it's a little public service announcement on behalf of many other breast cancer warriors.  Please think twice about campaigns like "save the tatas", etc.  There is so much about the breast cancer messaging that focuses on the parts instead of the person.  You just don't find that happening with other diseases and cancers.  (Though there is a bowlin' for colons event--is that close?)  Anyway, I hope you get what I'm saying, and I don't feel worked up enough about it to stay up on my soapbox very long.]

A lot of this was looking back and talking about my thoughts earlier in the process.  What am I thinking now?  I'm thinking that no matter what, cancer or no cancer, I'm okay and I'm going to be okay.  I'm not under the same weight of it anymore, even knowing it could be part of my reality again at any time.  I said it once a long time before (paraphrased from a self-defense lesson), but you have more control over what you fear when you invite it in.  I also know that it feels good figuring out my resources now that my life and my home have changed and I'm TCB for myself.  I'm working on slowly getting to the point where I can give back to some friends and supporters what they gave me when I needed it--it was all about self-preservation for a while, and it feels good to get beyond that.

There.  That's probably enough for now.  Tomorrow, Spirit.  We've got it, yes we do!  We've got it, how 'bout you?  That will probably be my favorite part to talk about...

1 comment:

merry said...

Hmm,so many ideas hit me as I read this, Jenny, and I can't think of a one! Well, that's not entirely true. I think one of the beautiful things I love about you is that you've made it very easy for me, and I'm sure many others, to look beyond what you are "missing" because of the awesomely gorgeous woman that you are inside. Why is our society so boob crazy? Because of radiation, my boobs are now uneven - one is smaller and perkier than the other, and it makes buying bras very difficult. But there's too much of them to go without, so I deal. And it's not important!! Shallow people will disagree with me, but shame on them for not loving a person for what is inside and criticizing the visual.
I remember working all day and then driving to Turville Bay for radiation every day for 31 treatments, and then on Thursday having to take a nap at church before directing choir rehearsal. I dragged myself through every motion and tried so hard not to complain and ask for pity. And, as I've said before, my cancer wasn't nearly as severe as yours and I didn't have a mastectomy!! You don't want a pity party either, but you need to allow yourself to feel what you feel. It doesn't help to stifle the fear, the pain, the confusion. Friends are for leaning on - use us!!So, keep on being the gorgeous woman you are with the brilliant smile, hearty laugh and sexy gams!!! I love you!