Sunday, November 13, 2016

To share or not to share.....

     Keep writing!:

     We live in an age where we share everything.  I have seen things shared that absolutely make me shake my head and I am left to wonder if anything is sacred.  I can be accused of being that girl that will post a workout or what I ate that day and even I will ask myself, "Who the hell cares?"  I do love to write, however, and I think I first heard it on "The Waltons" that one should write what they know.
     In my almost 44 years, I have learned a thing or two about life.  I know what it's like to raise children to adulthood, I know what it's like to lose and gain weight, I know what it's like to come back from cancer.  I know joy and adversity, love and pain.  I don't need to share everything about my life, but I have something to contribute.
     I used to think that no one came here, that what I wrote just floated out there unseen, uncared about, but a few weeks ago I got an email that I received a comment on this blog.  It was from a fellow chondrosarcoma survivor who found me through a Facebook support group.  To paraphrased, he thanked me for "giving him hope".  I'm not going to promise that this blog with always be filled with words of wisdom, but I want my voice to motivate and to mentor.  I want to be a place in that epic expanse of the internet universe where someone can read a post and say, "Wow...I'm not alone."
     So, here I am again, writing about what I know and what is important to me.  Feel free to comment and add your voice to my random thoughts.  I look forward to the adventure.

Saturday, October 10, 2015

Getting rid of the baggage

In the course of my year and half since my surgery, I have put on about 20 pounds.  It slowly creeped up in the seven weeks I was home from work and continued to do so once I got back to my desk job. I'm now deciding to do something about it and it's not easy.

The odd thing about chondrosarcoma is that it does not respond to radiation or chemotherapy so the only thing to do is remove it.  During my initial diagnosis and subsequent surgery and recovery, I never LOOKED sick.  I never lost my hair or became ill from chemo.  I never had to take time off for lengthy treatments, aside from the surgery and recovery.  In fact, I hardly had any symptoms and until the Wednesday before my surgery, I was running 2 miles a few times a week and going to the gym regularly.  I essentially was in better physical and mental state BEFORE my surgery than after....well, aside from that pesky tumor, which I had named Gloomer.

I didn't want to be pitied by anyone, not by my family, nor by my coworkers, but when you don't ever look sick, something one treats you any differently.  I came back from seven weeks of recovery from an internal hemipelvectomy with only a limp and the need to wear my sneakers with my uniform until I was able to put my boots on. I was treated exactly the same way I was when I had left.  Now that can be a good and bad thing.  Good because I didn't get pitied or treated differently, but bad because no one seemed to notice that I wasn't the person I was before I left.

Here's the thing.  With any cancer diagnosis and fight against it, you do not come out the other end the same.  It's kind of like a deployment.  It can be a good deployment or a bad one, but regardless, when you go to war, you change a bit and you are never the same.  I felt like no one understood me anymore.  I was in the culture where we have to stay fit for the military and were supposed to be warriors and although I considered myself a warrior in essence, I felt broken and weak.  I felt damaged. Everyone was getting ready for their fit test, and I was having transient foot drop and severe shin splints every time I walked fast.  I would state my frustration and would get the standard "oh, this takes time.  You can do it!" and I appreciated the sentiment, but wondered how that person would feel if he had his right ass bone removed and hamstrings reattached somewhere else, essentially permanently altering a body.

Sometimes, though, one has to realize that unless another person has walked your journey, how can they understand.  That's when it started to occur to me that I needed to accept my new role as cancer survivor and to own it.  Sitting around being jealous of those who could run easily and whining in my head about not being understood in my new role was NOT going to get me better physically and emotionally.

Here are the facts....I'm NOT and will never be the person I was before April 2014 when cancer wasn't a specter in my life.  My life is now scans every three months for another year and a hip that will never allow me to do one legged deadlifts or "ass to the grass" squats anymore, but I'm alive and I've got shit to do.

I no longer have cancer, but I have allowed it to feel sorry for myself and add 20 pounds to my 5'4 frame through pity stress eating and inactivity from telling myself that I can't do it or it's too hard.

And that needs to

"Nothing in this world worth having comes easy.":

Friday, October 9, 2015

Getting back to what I love for a purpose....

Quite a few months back, I made the decision to stop writing for many reasons.  One of the main reasons was that I was very busy with becoming a new supervisor, having a child finish his senior year and go off to college, and continuing my recovery from the chondrosarcoma surgery I had back in May 2014.

There was another reason, however, of why I quit writing and that was that what I felt was a gift from the cosmos to be able to work words into feeling, observations, and stories, had become a joke. It felt like ANYONE could "share" their journey or write a story.  Back when I was younger and had dreams of being a journalist, you had to have a degree to be one.  Nowadays, all you need is a phone and a blog.  Not that I am knocking blogs.  There are some great ones out there with a great amount of information, but for as many good ones out there, there are some truly awful ones.  I guess what I am saying is that it feels to me that anyone can write a book or a blog now and it doesn't matter if it's written well or even true, as long as it makes money or taps into the incessant need for us to follow vapid celebrities like the Kardashians.

But then I remembered something...a year and half ago I was diagnosed with a cancer so rare that it only accounts for 0.2% of all cancers and of that 0.2%, my subset accounted for less than a 1/3 of them. When I was first diagnosed, google searching didn't help as the awareness, aside from foundations like the Liddy Shriver Sarcoma InitiativeThe Sarcoma Alliance, and the collection of fellow chondrosarcoma warriors at the Chondrosarcoma Support Group on Facebook, just wasn't out there. There were no support groups up here in my area and sarcomas don't have the support and awareness as Breast Cancer (no offense to my sisters with Breast Cancer. I'm glad you have the support).

So this is what I thought.  My goal is to not be famous nor is my goal to make money from my blog. If one person who has been recently diagnosed with sarcoma or chondrosarcoma comes to my blog and no longer feels adrift in aloneness due to the rareness of our disease to see that there is life during and after sarcoma, then I feel I have served a purpose.

This girl is back in action.

A beginning and (hopefully) an end to Sarcoma....:

Thursday, January 1, 2015

On Not Having New Year's Resolutions.....

Mark Twain said this back in 1863, so if that doesn't say how long we humans have been making and breaking resolutions, then I don't know what does.  I have had my fair share of making resolutions and starting the New Year out like a warrior on the battlefield, all full of plans and well-intentions, but inevitably, I grew bored and moved on. This year, I made no resolutions, but instead decided that I will just continue to try to take care of myself and stay healthy.  It's not so much a resolution, but a continued commitment to myself that started back when I first was told I had chondrosarcoma in April and the subsequent surgery in May and recovery afterward.  Right then I decided that I simply cannot waste my life on things that don't matter.

It wasn't easy though.  Even with my best intentions, I found myself feeling a bit sorry for myself and allowing myself to not be grateful for what I have.  I'm getting better and practicing conscious gratitude daily to remember that my life is pretty awesome.

So, I am not starting a New Year thinking about what it is about myself that I have to change, but instead enjoy and love what I have.  Today, I am here, I am alive, and I am cancer free.  Yes, I still have scans every three months and yes, the specter of reoccurance can be out there, but right now, things are beautiful and incredible.

Happy New Year's Everyone.

Saturday, December 13, 2014

From the "I Had Cancer" blog - Are We Ever Really "Cancer-Free"?

I saw this article and wanted to share it because not only did it speak to be, I think it speaks for many people who have had cancer.  Just because the cancer is gone physically, doesn't mean it is mentally.

Are We Ever Really "Cancer-Free"? - From "I Had Cancer"

Friday, November 28, 2014

Live for those that can't.....

I've been going through a spell lately,  One that involves not doing what my heart knows is right for me.  One that makes me wake up in the morning without excitement and makes me go throughout my day just on auto-pilot.  It's a spell of saying "I can't" or that "I'm too broken".  Instead of saying what I can do or focusing on the little joys of my life, I have been focusing on what is wrong with it.  That's why I haven't been posting, it's why I haven't been exercising or meditating, it's why I spend my free time watching television shows that I have already seen and reading mindless things on the internet.  I suppose some might call it depression, but I wouldn't go as far as that.  It's a mindset that I have put myself in since the end of my physical therapy.

You see, even though I have been extremely lucky to get through a cancer diagnosis and the surgery and recovery for it without a significant alteration on my life for the casual viewer, it HAS affected me, physically and emotionally.  Sometimes living with the knowledge that my body mutated, that my body is altered, and that I will no longer have the luxury of the security of a healthy body is hard to take.  Waking up in the morning with a stiff, scarred hip as a reminder of my mutation sometimes makes me want to get right back in bed and not think about it.

However, a few things have happened that reminded me that the "I Can't" mentality is bullshit.  One is the story of Lauren Hill, the college basketball player with brain cancer and my reading and eventually viewing of the book and movie, The Fault in Our Stars.  Now, I know what you may be thinking.  One is very much real life and the other is fiction/Hollywood.  I understand that, but I assure you that in real life, there are people who struggle with the illnesses addressed in the book and movie.

When I see the story of Lauren and read the tributes to lost loved ones of sarcoma, it reminds me that I have an amazing life and that I am extremely lucky to be currently cancer free.  I have lived to be 42 years old, I will see my boys graduate and become men, I get the love of a good man every minute of my existence.  Some don't see 18, hold their first child, fall in love, or see their first grandchild. Why am I squandering my life in the mindset of "I Can't"?  I may never see 50, or I may see 100, but because of that uncertainty, shouldn't I be living every second to the fullest?

Being as I turned 42 just this past Wednesday, I will make a new commitment to not only myself and my family, but to all of those that did not get their next birthday, or their first kiss, or the blessing of seeing their children grown.  I will live my life like the beautiful, glorious mess that it is and to be grateful for everything in this life that I have been able to experience.  I will remind myself that every morning, every ray of sunshine, every ache and pain, is a reminder of my fight and that I am alive.  I will use that gratitude to live a life out loud and raise awareness for those that live with cancer.  I will not be a victim of my own creation, but a survivor with a voice and a will.

Live for for them.  This is my vow.  My mantra, my goal.  

Friday, September 26, 2014

I am unique and wonderfully made.....

Back in June, I wrote this empowering blog post about body image after surgery.  I went on about how my cancer journey has made be respect life more and gave me a wake up call to not pick apart who I am and what I look like.  Maybe I was so hopeful because I was still taking Percocet or because at the time, I was riding high on simply being alive and past my surgery. Either way, I had meant what I said at the time.

What is unfortunate, though, is that if you don't work on that empowered feeling, it can slip away from you. I would say that ever since puberty, I never felt right in my own skin.  I always felt ungraceful, or large, or weird.  Next to other girls, I felt like a rhinoceros, large and unwieldy.  I very rarely felt beautiful or pretty and the thing is, aside for a few reprieves where I felt like a goddess and a husband that tells me everyday that I am beautiful, I still sigh when I look at myself in the mirror.

Some of it comes from my recent weight gain after my surgery.  I haven't put on much weight, but it's enough to where many of my clothes don't fit right.  Thankfully, my Air Force ACU's cover most of it, but the other fifteen hours of the day, I can't cover up with my uniform.  Lately, there have been many mornings when I am putting on a pair of jeans that I have mistakenly pulled from my pile and find out that I can't button them and it puts me in a mood of self-loathing that sets up the spiral into self-hatred.  From the jeans not fitting, I move on to how ugly my scars are, to how old my wrinkles make me look then onto why I keep my hair short when others have long, girly hair.  It's unrelenting.

Why do I do this to myself and why do women put themselves through this?  Why are we always comparing ourselves to each other and to unrealistic portrayals of what beauty is in the media?  Why are we never just happy with the body we have and revel in it?  If one is happy and healthy, what difference does it make what your dress/jeans size it or what your weight it?

This is the reality in my case.  I need to exercise to keep my muscles strong.  Four months after surgery, I still have a right hip that droops because of muscle weakness.  I also have to stay in shape because I am a Guardsman and need to stay fit to perform my duties.  I also want to be healthy so I can do the things I enjoy, like hiking.  Other than those three reasons, what is there?  Well, throughout my life it's been to look pretty and sexy.  It's because I didn't want to feel fat and clumsy next to other women.  It's because I have the mistaken belief that if I am certain size then I will be happy.

But if I don't love myself now, I won't when I lose weight either.  If I let others view of me or my own view of myself make me not be who I authentically am, I will never be truly happy with myself.

Who am I authentically?  Well.......

1.  I have scars.  I have stretch marks.  So, what?  The stretch marks are badges of the wonder of my body creating life.  My scars are the remnants of not only a childhood of awesome play, but of the remarkable ability of my body to heal when injured or sick.  Should I feel bad or ugly because the eleven inch scar on my hip may gross out someone whose ideal of beauty is being flawless?  Fuck, no!  That scar is my reminder that I came back from a scary as shit cancer diagnosis and am coming back with a vengeance.

2.  I truly am not graceful.  I can't wear heels, I tend to run into things, I dance like a weird mix between Molly Ringwald and Ally Sheedy in "The Breakfast Club" and Shaun T from "Hip Hop Abs".  Should that stop me from getting out on the dance floor to get down or prevent me from walking into a room with my head held high because I am an awesome human being even if I have to wear flats because I walk like a newborn giraffe when I wear heels?  I'm going to say no, so if you laugh at me because I am dancing like Mary Katherine Gallagher, I'm not going to hear you or care.

3.  I LOVE MY HAIR SHORT!!  I have been rocking my grey speckled pixie for the last two years and on my best days I love it and on my worst I hate it.  I only hate it sometimes because I see too many people going on about how girls with short hair look like boys or lesbians, so once again my own love of my hair is influenced by what others think and it's time that changed.  My pixie makes me feel empowered, it makes me feel beautiful, and it's easy as shit to take care of.  If anyone out there is too ignorant to understand that I choose to wear my hair because I love it and not because I want to look like a boy, then tough shit.  Same goes for coloring my grey.  I have been proudly color free for four years and sometimes I waiver because it's a common misconception that women who don't color their hair are "letting themselves go".  Bullshit!   No one says that to George Clooney, so why should anyone say that to a woman who wants to rock her natural color?

4.  I'm not a fashion plate.  I have always joked that if "What Not To Wear" was still on that I would be that episode that started with, "Kelly is a 41 year old mother of two whose wardrobe consists of baggy jeans and t-shirts her sons grow out of...." and Stacy and Clinton would put me in front of the 360 mirror while I tell them why my Avengers T-shirt rocks out loud.  Now while I love the tips that this show gave people, I sometimes didn't like the message given to not be yourself.  I love to dress up when I go out, but the majority of time, I love my baggy jeans and my t-shirts that can range from Doctor Who to Marvel to Beastie Boys.  This is me, it is who I am.  I'm not hurting anyone by what I am wearing, but I am hurting myself when I try to be someone I am not.

5. And most important, to paraphase the Bible, I am unique and wonderfully made.  I have curves, I have gorgeous eyes, I laugh easily and hard, I talk A LOT.  I am different and awesome and should not compare myself to others.  I love wholeheartedly and deeply.  Say it with me....."I am unique and wonderfully made!"

I make this vow to myself today, to not compare myself to others, to revel in the body that I possess, to love myself and rejoice in who I am, to not let others influence my authenticity, to (thank you, Alanis Morissette) remember my divinity.  It's not going to be easy undoing 30+ years of  self-doubt, but I am worth the effort.

"Your crown has been bought and paid for. Put it on your head and wear it." — Dr. Maya Angelou