If you could, would you choose the same path?

These questions has been swirling inside my brain for the past few weeks.  The question of, "If I could, would I have the surgery again?" or "Do you wish you had the surgery sooner?" and "Would you advise your surgery for another person?"  My simple answer...yes.

I definitely would choose surgery again, and I do wish I would have had surgery sooner despite the pain, frustration, tears (oh so many tears), and feeling like an broken unanswered science project; I feel better- not great but better.  I wouldn't even blink or skip a heart beat, I would do it all over.  Would I listen to my heart more saying have the surgery, your friends and family will understand eventually, definitely.  I spent so much time going back and forth, thinking about the pros and cons, asking myself did I do everything in my power to be better, and how much longer can you hide/overcome the pain.  I remember thinking, what would it be like if I died on the operating table or  had to have a chest tube; would the world that I lived in change - maybe?  I was terrified of dying and I was disappointed in myself for agreeing with those who said I had given up, said I was weak.  My heart was heavy, my body hurt, and my mind - my mind was tired; tired of focusing on something that was only getting worse.

My PT told me yesterday, you know it is really hard to decide lets remove a rib from my body, let alone 2 ribs....at a young age.  I'm glad you got the surgery, I'm happy you don't cry during the entire PT session anymore and I can see you smile.  I couldn't agree more!  When is the right time in your life to say, "Enough is Enough.  I'm done, I've tried everything in my power and I keep  getting worse" - you'll know that moment when you get there.  TOS presents itself in a variety of ways, maybe you were born with it, maybe it was caused by repetitive movements, or from a traumatic injury.  Whatever the case may be- surgery is individual, your disease is individual, its misdiagnosed, misunderstood, and mistreated.

My advice for 1st rib resection surgery for TOS is this:  The decision is yours.  Surgery is long, you'll wake up in extreme pain, and recovery is a slow process.  However, you'll see a change in symptoms despite the pain and discomfort that the surgery caused.  There will be highs and there will be lows- hearing others stories will provide comfort and emotional distress (why are they healing faster than me {childish I know, but it's part of the mental game})  

1st rib resection surgery changed my life forever.  I feel my spark coming back to life and am excited what the future holds.  It's been hard.  I still feel broken and freakish some days and I still cry.  It is all part of the process.  I was told to slow down, had I broken my arm I would have just gotten my cast of and Christine you've  had this your entire life, what made you think recovery was going to be immediate without a lot of hard work?  They were right, I got so excited I forgot - surgery isn't an easy fix, it takes work to heal properly!

There have been a lot of rough very rough days, but this is me, this is my story, my disease, my life and I'm owning it.

A change in direction

Today I quit my job at Office Max and accepted a position as a research assistant in the Cancer Prevention Control Department on campus and became an official Colorado resident.  I'm slightly overwhelmed and nervous!  I hope that I am as great of a person, student, worker that my new bosses think I am.  I do feel very blessed on having the opportunity to work with a wonderful department and  have them help me reach my goals of cancer research and becoming an oncologist.

Even though I've never intended on returning to Iowa, it is still and will forever be my home.  I don't tell people I'm from Denver or even Colorado.  I say I live in Colorado but I am an Iowa farm kid.  It was a very bittersweet moment today getting rid of my Iowa license plates.  Is it a sign I actually need to be an adult and grow up now?  Mom, Dad....HELP!!! There is a part of me that wants to stay the baby of the family forever; feel protected by my family members.

I'm really excited about this change in direction, working for something that will help me further my career not to just pay the bills but I can't help to be skeptical.  What if I find out my dream of working with cancer patients, researching cancer, and being in that arena in general is a bust and I hate it?!

**yes I'm aware this song is about dating, but it has been stuck in my head all day and minus the dating part it could fit this post ;) **

Remind me of...

They remind me of my struggle; my struggle for 'normalcy'.  They remind me of path to health, one that gives better quality of life.  They remind me I am special, unique, a fighter.  They remind me of the pain, the tears, and the tingles.  They remind me of the discomfort, self guilt, self pity, and lack of self acceptance. They remind me of my secret, hidden life.  They remind me of the lack of understanding, knowledge, and consistency among the medical field.  They remind me to keep moving forward, but to never forget where I was.  They remind me to take things with a grain of salt - not everything is life or death.  They remind me that I chose freedom to control my body and lifestyle....They remind me that I survived...

They still hurt, get caught on clothes, are red, puffy, and are slightly numb...I am grateful for the daily reminders.  I still don't love them.  They make me very self conscious; some people stare, some people make assumptions, and they give me armpit boob (not too cute haha) but it's okay.  It is all part of the process.  I'm sure in a few months I will say, "they remind me that I am beautiful and resilient" but for now... I'm still adjusting.

So, what are "they"?
          -My Scars
On difficult days, I read this and it helps.

From every wound there is a scar, and every scar tells a story.  A story that says, "I have survived." - Mhar

The dreaded armpit flab/side boob haha

Recovery on a down slope

Recovering from surgery has its ups and downs.  I mentioned earlier that I've been in a slump or as my mom would like to say, "Pip squeak, you are depressed. Baby girl, this isn't like you."  I don't disagree but I don't want to admit that I'm depressed at the same time.

I've been depressed largely due to my activity level and how sluggish my right side is healing.  Sure, I was "active" before my surgery, I tried to keep myself busy.  I would attempt working out so it would make sense why chilling extra hard all summer would be difficult.  The not lifting more than 5 pounds in theory doesn't seem that hard but in practice might as well be climbing Everest or solving the nations economic crisis.  I hate asking people for help because I think I am putting them out and it is embarrassing.  I'm 23 not  83!! It is the simple things too, taking out the trash, cleaning my home, sleeping on my stomach, getting off the floor without using your upper body.  It is extremely difficult to adjust automatically to a new life or a new way to do things while you are recovering.  You have to consciously think of every moment, every activity, and every breath for that matter.  Everything you do becomes an Olympic endurance event; it is planned, calculated, practiced, rethought, performed, analyzed, and readjusted. 

I know healing takes time and is a very complex process, I get that.  What I don't understand is how to tell myself: things will be okay, your body heals at different rates, don't give up.  It is so much easier to tell that to a client than be the client.  Furthermore, I tried to convince myself before the surgery that it really wasn't that big of a deal, routine surgery - it's not.  It is a very invasive, intense surgery that required me to spend 7 full days in the hospital.  I've had 3 chest x-rays, a CT scan, EKG, and lots of blood tests all because my lungs weren't quite up to par and they were afraid I had collapsed them or had a blood clot.     

The main source of my depression, no bull shit, straight up - I don't recognize the girl in the mirror anymore, I simply have a loss of self identity.  The thing about my TOS is I've had it my entire life and didn't realize that kids my age didn't experience the things that I did every day.  My entire life, I have been in pain.  I didn't talk about it, I didn't WANT to talk about it.  I'm still young, still trying to figure out the world, who I am, and how I fit into the world.  Several people have told me that it is no different than cancer survivors or other people who have had massive surgery but I disagree.  I disagree based on the fact I've had this my entire life, I fully accept the fact that I may not have known I had TOS my entire life but I have felt like a mystery science project - different.  Other people may not identify me as the girl with medical issues but before being a dancer, student, science nerd, I was a kid in pain.

Unlike other diseases or disorders you remember a time before the diagnosis - I don't.  I don't know or remember a time before the pain, before accepting the role of a science project.  I don't know how to be a normal functioning person!  I don't know what to say when people ask me about it.  Do I say, I had TOS or make a joke out of it saying my parents loved me so much they gave me extra bones and got them removed because they gave me a run for my money.  Or is it one of those cases where you will always have reminders of your journey but you reached the destination and it is over leaving you to the next adventure?

I'm lost, have been lost for awhile now.  I can't say that I am out of my slump as I write this rant but I will say this.  Recent comments from people with TOS discovering my blog has helped rise me up a bit, I never thought other people with TOS would find my journey helpful or comforting knowing they weren't alone....It made me realize that I am not completely alone which at the end of the day is nice.

 

My escape

Throughout my blogging experience I've noticed that when things get really busy or when I'm in a slump talking about my feelings in the moment is the last thing I want to do.  Granted, this fact is true about hmm 85% of my life...healthy I know!  With that being said I am not surprised that the next few rants and raves will be on the more somber side. 

I knew I would become depressed during my recovery process; in my opinion, I consider it very normal and would be concerned had it not happened.  Although I expected the slump, I didn't expect that everything would come to a head all at the same time.  From family bummers, relationship doubts, loss of identity, general struggles, and the big financial worry big restriction of activity financial worries  = I needed an escape.
 

I escaped to Wyoming and it may have been the best thing I have ever done.  Did I run away?  You bet your ass I did.  I went home with my best friend to visit his family in the small town of Green River.  It was just what I needed; the 2 friends I went with never judge, understand where I am coming from yet challenge me to better myself, aaannd give me that swift kick in the butt to move on from things.  They are part of my family whether they like it or not. 

I think the best thing about my escape was the fact the quiet surroundings reminded me of home, something that I desperately needed in this recovery slump.  I needed to be around people that I didn't need to wear a mask around.  (My boyfriend would be annoyed that I'm quoting Batman but...) Honestly, there are people that I feel I need to protect from my life or my emotions so I wear a happy go lucky mask and pretend as if I'm not in pain or can't get out of my own anxiety state.  I'm sure I put on a happy face for my benefit as well, the old wife's tale, "if you smile or think positive, things will be better and good" I don't want people  my parents feeling responsible for my TOS, granted it is their genetics but it's not their fault and I don't want to send my friends into a depressed state because they don't know how to handle or help with my recovery process. 

In Wyoming, it was the typical going home trip.  There were massive amounts of love, warmth, a few decent amount of tears, alcohol consumption...times 5, a fully stocked fridge, deck chilling, hot tubing, and dancing. 

I was reminded that, I needed to worry about myself and focus less on how my friends and family were coping with my recovery.  I focused on how I felt about my recovery, reasons why I was in my slump, and reflected on how my life was starting over in a way and what I wanted to do with it. 

My Deepest Fear

Fact: I haven't felt like myself in a very long time.  Maybe it is due to the slump of recovery or being in a state of limbo or trying to be everything for everyone or all of life stresses hitting me at the same time.  Whatever it is my anxiety about my life was somehow decreased when my friend sent me this quote.

What do I fear?

I fear stagnation and lack of progress. I fear never reaching my potential and being average.

I fear being forgotten...The past...Yesterdays' news.  I fear giving up and being passed by, going softly into that good night.  I fear letting those that I love down, letting myself down. 

I fear settling, giving in to the "that's just the way it is: mindset.  I fear dying without leaving my mark.  I fear not feeling these fears anymore and just floating along. 

These fears feed me, they nourish my drive.

I love my fear. 

I love this quote because these are the fears that no one talks about.  Sure, you think about them when you are falling asleep but do you tell them to someone or better yet - do you admit to yourself?  Chances are you don't.  I didn't tell others (until now) these are my deepest fears.  I have always feared not being enough, doing enough, and dying without making a difference to those around me. 

Fear is scary, can be silly, but fear drives you to a place you've never been before, challenges you, and forces to look at yourself in a different light.  I hope I don't lose my sense of drive and fear because I'm not sure what kind of person I'd be without it...

Extra help to get me through the day

I've had a couple good days with a few not so great days in my recovery process lately when that happens I never quite know how to react.  Be upset? Frustrated? Accepting?  I mean I knew this would happen but I guess I am still struggling with the reality of how major of a procedure I had and how it will significantly change my life. 

On days like this Most days, I look at quotes trying to find encouragement and I keep coming back to a few.  The most frequent is on a magnet my grandmother gave me a few weeks before she passed away.  I can't help to think that she meant every word on that magnet knowing that my road in life would be the less traveled, the one under construction, and that I in my own self destruction, tunnel vision manner would need the extra kick in the butt on trying days. 


Although it is just a silly magnet, it helps get me through the cloudy days.

This is my wish for you: comfort on difficult days, smiles when sadness intrudes,

rainbows to follow the clouds, laughter to kiss your lips, sunsets to

warm your heart, hugs when spirits sad, beauty for your eyes to see, friendships

to brighten your being, faith so that you can believe, confidence for

when you doubt, courage to know yourself, patience to accept the truth,

love to complete your life. 

- anonymous