FORCE

3 weeks ago I received an email from one of the ladies from the support group that I went to.  They were going to have a table at the Minnesota Lynx basketball game and needed volunteers to help.  I immediately responded that I would help.  Without thinking about it.

The more that I thought about it, the more I wanted to do this.  I don't feel like a fake any longer when it comes to my surgery.  I feel caught in the middle.  I'm not a cancer survivor, I'm a previvor and that comes with it's own set of issues, emotional and physical.  I feel the need to connect with someone like me, to talk to someone who understands me.  Someone who made the same decision I did - surgery to prevent cancer. 

I showed up early and the group of us set up tables in the halls of the center, where game goers would walk through.  The posters showed women and had questions about genetic testing, breast cancer and the signs of ovarian cancer.  We had stickers for kids and business card sized information for adults.  The Lynx gave us some t-shirts to give away.

Our mission was to hand out information and answer questions.  There were members of FORCE.org, peer educators, women from Susan Komen organization, women from the MN Alliance for Ovarian Cancers, genetic counselors and people like me who had gone through testing and surgery.

You know what?  It was damn hard to give out that information.  Women would joke that they didn't need cancer.  They would turn their heads and not acknowledge us.  They would say they knew all about it.  The only time that they were willing to walk up to us is when we had the T-shirts or they knew one of us by the table.

I was disheartened.  Here I was ready to share my story after much soul searching and no one wanted to hear it.  And these are mostly women at this game, women of all ages.  One of the peer educators talked to me and said that about 70% of people don't want to know if they have a genetic predisposition to cancer.  They'd rather just live life.  At 27 that was me.  But now, at 43?  I wanted to know, needed to know that I was doing something to reduce my risk other than mammograms. 

So when I got home, I signed up to volunteer on the FORCE Organization website.  I don't know what all that entails, but I left that basketball game wanting to share my story with more women and wanting to support and be more involved with women like me.

I'm here...Anxious Again

I'm going through that rollercoaster of emotions again.

Friday I have my revision surgery to clear up some issues with my foobs (fake boobs) and I get my fipples (fake nipples). 

Again I think I'm in that place of "it will be over once this is over."  That place where I try not to think about what is coming, because if I did, I'd go nuts.  Maybe I am already nuts.

 I had a major nesting episode this past weekend where I  started cleaning.  Pete causally says "Are you bored?"  Wrong thing to say.  Nope, not bored, just cleaning a house that needs cleaning.  I think I tarted a fight to relieve some of my pressure and he started to respond, then told me to go away.  An hour later, we had both cleaned our anger away and apologized.

I'm struggling with the fact that I feel better.  I feel good enough that I'm working 8 hours a day (albeit at home).  I can clean for an hour (it exhausts me and I'm fast asleep by 8:30pm).  I can cook/bake (but take a nap in the afternoon).  It's a struggle because I keep telling Pete to go, ride his motorcycle, go to the store, walk and work out.  When I want to be doing those things with him.  Initially I told him to get out of the house and do stuff because it wasn't fair that he was stuck inside with me.  But partially I did that because I knew that I couldn't participate.  Now I think I can do it and it stings to watch him walk out of the house without me and make plans without me.

It must be like living with someone who is bi-polar, this living with me.

I've learned though, that I need to talk.  That I can talk.  And that it's ok to share.  I'm opening up a bit by bit and letting him understand some of what's in my head.  I hope that I can continue to do this, bit by bit.

So that's my story, for today and today only.  All of this may or may not change tomorrow.  It's just how my life is working right now.

Today Has No Plan

Today has no revolutionary plan to change my life completely by Friday. 

I keep seeing on Pinterest this quote about if you're tired of starting over, don't quit anymore.  Well damn, that's a kick in the pants.

This is the thing, I don't think I quit.  I think that I was on am on this healthiness journey in life.  This marathon to the end.  And along the way, I needed to detour to do something else for my health.  Right?  I mean, who the hell cares if I'm skinny Michelle with rock hard abs and hips like a 13 year old if I have breast cancer and my body is ravaged by the side effects of chemo?

Keep trying.

I met with Dr July.  My very loved bariatric surgeon.  She is one of two doctors that I'd follow to the ends of the Earth for care if they left this area.  She's brutally honest and wants me to be honest too.  She's caring, but will tell me to kick it in gear when I need it.  She also doesn't have unreasonable expectations of me.

She noted that I gained 15 pounds since prior to surgery and about 5 pounds in the last month.  Clearly, my band is not where it needs to be to keep me from stuffing my face.  Clearly, I need this band to be set for me to help me eat in a way that is healthy.  It's convicned me that I really do need this band.  We talked for a while about how I've been doing and what's been stopping me from being healthy.  Really talked.

One of my issues is that I don't know how to work my abs and chest so that I'm not hurting them, but rebuilding muscle.  I can't walk/run because my abs are so weak and really a bit injured still from surgery.  So I'm on this cycle.  She referred me to a few sessions with a sports physical therapist to help me learn how to do that without hurting myself. 

She referred me back to eating 3 planned meals and 2 planned snacks a day.  To try this for a couple of weeks and if I can't sustain this, I need to make an appointment with the nutristionist for some check ups on my eating habits and patterns.

She referred me to their exercise specialist at the center.  I can meet with her as often as needed for help with appropriate exercises for healing and getting back to loving that daily workout.

And I committed to myself to be mindful of my eating again.  To ask myself why I'm eating before I put something in my mouth.  And to check myself for a healthier option to what I was/am about to put in my mouth.  Mindful eating.

So I have a plan.  But unlike the other plans, this is today.  I'll worry about tomorrow when it arrives.

My Life *IS* Randoms

I was watching some TV show today talking about being authentic.  And I couldn't help but wonder if I needed therapy.  I mean, in the last 48 hours I've signed up to be an advocate for Force but actively spent hours wondering if I did the right thing in having surgery.  I'm irritated/frustrated about my inability to work out/run like I used to and hate the number on the scale, but eat chocolate cake and chex mix like it's my main sustenance. 

I think I have it all figured out at various points in my life, but when I look back on those episodes in life, I never really had much figured out.  What is clear to me is that I give pieces of my puzzle to everyone.  They help with that one piece and I bring it back to add it to the table.  The thing is that the piece changes a little with each fix and the puzzle no longer fits together.  So I cover up the empty spaces as best that I can to make the puzzle look whole.

When I met Pete I starting giving him more and more pieces to my puzzle.  And it was so liberating.  My heart soared and my soul was more free than it had been since I was a child.  The preverbal birds sang and hearts floated on air.  The issue?  I revert back into myself and start hoarding my pieces.  This causes me pain and issues and self doubt and all that crap floats back in my head.  I close off to Pete and he thinks that he is doing something wrong and he closes himself off.

Lets get one thing clear.  Well 2 things.  1.  I love Pete with my heart and soul.  2. Closed off people cannot succeed in a relationship and be truly happy.

So I come back to the thought - Do I Need Therapy?  I've never done it before.  Well, no, that's not true.  I've done some sessions for my TMJ back when I was a teen and I've done some sessions for an assessment for my lap band/gastric band.  I know that there are people who are totally against it.  I know that there are people who participate and keep it secret.  Then there are people who sign from the rooftops about therapy.

Maybe I'm tired of trying to hold my puzzle pieces in place.  Maybe I'm tired of not being able or feeling like I can show anyone my puzzle.  Maybe I just want someone to validate my thoughts and let me know that I'm normal, or at least working towards normal.

The Emotional Toll

I thought I had it all worked out. I spent hours with Pete talking 5 years ago when my Mom was tested for BRCA.  We talked about how having a mastectomy would change myself, and in turn change our lives.  I had it figured out after spending so much time talking.  It would change me, but I could get through it.  And I had it all figured out. 

When my mammo was abnormal and my path changed and I thought I had it all figured out.  I had spent all that time talking and thinking and figuring it all out.  But the reality is that I didn't.  I have this self doubt that is creeping in.  I have a lack of confidence that is disheartening.  I can't help but wonder if I did the right thing.

I spent so much time prior to surgery getting physically and mentally ready for surgery.  When I let myself think too much, I was an emotional mess and spent the day or days in bed crying.  I tried to focus on the positive and often put a smile on for those around me.  I planned and wrote lists and made calls, all things to keep me busy. 

I spent the days after surgery trying to physically recover.  This was a hard surgery.  Even now, 60 days later, I hurt and have muscle soreness and pain.  And I remember remarking to someone, about 30 days out, how surprised that I wasn't more of an emotional basket case.  I kept waiting for the emotions to bubble up and flow out.

The last couple of weeks, as I try to resume my life from before April, I noticed that I was more emotional about random small things.  While I can potentially attribute some of this to my cycle (I'm still learning my body's new/other cues), I can't blame it all on that.  I've had some long crying jags and intense discussions with Pete, along with car rides where I don't remember getting from point A to B.  The emotional part has kicked in.  Hard.

I think I'm in the middle of grieving my old life.  I've done this before.  My failed and destructive TMJ surgeries led me to grieve the life that I would have had without the daily pain.  I was well out of grief when I could look back and see that's what had happened.  I had no idea what was happening while in it and likely held most of it in, leaving no one to point out to me what was going on while I was in it.  This time I have an inkling of what's going on.  But as with any grieving process, it's different for each person and each time.  The difference is that I can't go this alone and I shouldn't go it alone.

It's a struggle.  I spent so much of my life relying on me.  Living in my head, figuring out things myself and living my own problems out.  But I can't expect to not let Pete in.  I can't expect him to support me, without knowing what I'm thinking and what I need from him.  I need to let him in.

I've come to realize today, that I think I'm second guessing myself.  Second guessing if I should have had the surgery.  I'm caught in this no mans land of being a previvor, not having cancer, but having a pretty big probability of having it at some point.  I'm struggling with body image, self confidence and figuring out how my life looks today and forward.  What if it was all for nothing?  What if I took the wrong path?