Saturday, March 21, 2015

Just breathe

Fear.  Defined as an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.  Growing up, I didn't have many fears, but I wasn't a dare devil.  As I grew older and a little wiser I still can't believe some of the things I did that.  For example, I let my cousin launch me off her feet across the room only to break my arm.  Now things have totally changed. I fear that the cancer could grow or spread.  I fear that I won't walk again.  I fear I won't drive again.  I fear I won't be able to pick up my baby nieces or play with my nephews.  I fear I won't have a child of my own to pick up some day.  I fear I won't be able to enjoy things of my past time, shopping, biking, shooting hoops, etc.    

Emotion.  Defined as a natural instinctive state of mind deriving from one's circumstances, mood, or relationships with others.  I feel that cancer has put a burden on my family, friends & husband.  Every time I come home from dr's appointments I feel like I just went through a break-up.  I don't know if I set my expectations too high and when I get the news from the dr. that nothing has changed, it's like dagger to my heart.  Yes, it's great that it didn't change...it's great that my brain scans look normal.  I know we aren't under a treatment plan right now, and from the sounds of it, since nothing has changed, there won't be a treatment plan.  Yes, this news everyone says is great news, but I just don't feel great.  This disease has turned my world upside down.  I don't want to offend anyone or have people think I am depressed or ungrateful, but imagine going to bed one night and when you wake up your legs don't work.  I feel like until something major has happened to you, whether it be losing a wife/husband/child, a body part, hearing the words "you have cancer", you don't fully get it.  That sounds horrible of me to say, but unfortunately that is how I feel.  No matter how much you try to focus on the positives, the negatives don't just get up and walk away.  The piece of you that was taken away will never be replaced.  The break-up will always feel so fresh.

Goal.  Defined as the object of a person's ambition or effort; an aim or desired result.  The dr. told my parents it would be at least 2 years before I would be walking again.  Unfortunately for them, I proved them wrong.  At about my 1 year mark of PT, I walked with my cane without any one holding me.  I'm on my feet more at home, doing dishes, cleaning, cooking dinner, and I even did my basement stairs (yes, I caught hell for this since no one was home).  So, goals for this year, be able to completely walk free of braces, cane and walker.  I can't wait to get behind the wheel again.  I need to fix my drop foot before I can drive so that is on my list as well.  I've been building up my upper body strength and plan to get just as strong in my legs. I want to be mentally and emotionally stronger.  I know I'm going to have negative days and I know it is perfectly okay to, but I want my positive days and moments to outshine the negative ones.

Thank you for the continued prayers and support.  Some days I just sit and read the cards that have been sent to me and remind myself I have a whole team behind me.  

"Whenever you find yourself doubting how far you can go, just remember how far you have come.  Remember everything you have faced, all the battles you have won, and all of the fears you have overcome." -unknown

Saturday, February 21, 2015

See you on the court.

Well things have been moving towards a positive direction, physically speaking. It is like a switch was flicked in my muscle memory to "on". Granted I'm miles from where I want to be but I am making great strides..literally. I am making laps at PT with my cane and very little help. Jon stayed one day to watch me walk and I think I surprised him. I have trouble with keeping my cane and left leg together but it's such an amazing feeling to know I am getting there!

All this snow we have been getting today really has me itching to go sled riding.  Growing up I would spend hours outside. We were supposed to go up to my brother in laws cabin today but didn't want to chance the roads so no sled riding today. Maybe tomorrow! Most complain about this weather but it just brings me back to my childhood and all the memories I have. If I have a complaint it could be a tad bit warmer...blood thinners and negative degrees don't mix well!

Today an old friend left me speechless with such kind words on Facebook.  "You are a winner, a competitor, and never backed down from anything or anyone." I still remember my senior day soccer gift you gave me and the card that read, "this isn't us, see you on the court." I grew up on a team whether it be basketball, soccer, track & cross country and softball. No hiding it, basketball was my favorite. The team I have now is not for a sport but Lord knows I have the best support team I could ask for. Day 1 I said I wasn't letting cancer get the best of me and I honestly haven't...there may have been moments, just like in basketball I had moments. Some good, some bad...and I ran for those! But the game doesn't stop just because things didn't go your way. If you stopped it would just pass you by.

So, I feel instead of complaining try living for the moment. I may have cancer but cancer picked the wrong person.

As always, your love and support mean so much to me. Kindness, memories & prayers give me so much strength. At PT they asked what got into me and I said I think God is hearing my prayers...and I believe He is! Thank you all :)

Tuesday, February 3, 2015

Hard work isn't easy!

It's been a while since my last update.  Sorry about that.  I hope everyone had a wonderful Christmas & New Years.  We enjoyed ours with family...those are the best kind.  My most exciting gift this year is my Remington 370 shotgun.  Can't wait until this weather breaks and I can go shooting.  What is Jon turning me into?!

I had a small setback in December through some of January.  A few weeks later...I hope.. we have it under control.  I missed 2 weeks of PT so I don't feel I am as in shape.  I find myself out of breath after each exercise.  While I was working out, an older gentleman told me "hard work isn't easy".  He is not kidding.  My next rescan isn't until the middle of March, so I don't really have an update on the tumors.  I can really wiggle my toes lately...something I was not able to do a year ago.  Its hard to think this time last year I was about the check out of Mercy after my month stay and come home.  Time flies.

This weather stinks though!  I basically go to PT and come home.  I'll be happy to get outside without all my layers.  Who knows, maybe by then I'll be packing away the wheelchair and keeping the walker and cane out!

My brother in law had his bday party at a digital golf place and I thought..yeah I can totally swing and hit a golf ball.  Jon stood behind me and I was scared I was going to smack him in the head so it was just awkward all together.  I did not hit him but he did let me go and fall flat on my face.  It of course was video taped.  I didn't get hurt, just embarrassed and got a great laugh in.  Maybe at the golf outing this May I will be able to hit a ball...and not fall on my face.

Sorry such a boring and information lacking update.  Maybe that is a good thing....not much to update about!

Thank you all again for your continued support and prayers.


"Turn a setback into a comeback"


Wednesday, December 31, 2014

Year One Flashbacks

Thinking back to a year ago today I was under going my 2nd back surgery that would discover the cancer. Jon & I spent NYE/NY together in the hospital only to come home and head right back down 6 days later and not come home until February.  We had many hospital stays from then until now. My mother in law & I enjoyed many naps while I received treatments. Last night we had to take a trip to the ER for some issues and all I could think was great, another year starting off in the hospital.  Thankfully I'm home taking it easy and will be able to celebrate 2015 with my family.
I could sit here and lie and say "new year, new me" but I know it won't be a new me. Everyday is a new start and waiting until new years to change something you don't like about yourself is foolish. I feel like finding the good in everyday is going to shape you into the person you want to be...at least that is what I learned. 2014 has taught me to be perseverant about my future. Only I can make it better. I push myself at PT, I'm trying to do more for my husband,  get out of the house more and realize who and what is important. Yes I have many days where I have set backs. Just the other day I was walking around the bed, using the wall for balance, tripped and caught myself with my forearm on the radiator. I got plenty of bruises but bruises heal and explicits help...haha.
As mad as I want to be at 2014 and all the trials we faced, I can't be. It has made me a more humble person. Sure the diagnosis was something we never planned on hearing, but my support team is greater than cancer. I met people that have changed my life for the better and feel like family to me. I'll probably bawl like a baby when my PT is over! My entire family has been my backbone when I needed them...no matter what they were doing or had planned, they changed them for me. I consider myself lucky to be that loved.
So as 2015 is hours away, I say bring it on. If I can get through this year, I'll be able to get through the next.

Happy New Years to you and your family. Remember to find the good in everyday!

Thursday, December 18, 2014

Home is where the heart is


It feels so good to sleep in my own bed! We have been very busy this past week.  Last week we traveled to Florida and went to Disney for a day.  We spent over 14 hours there between Animal Kingdom and Magic Kingdom. It was not like it was when I was a little kid and having all the characters walking around...now you have to stand in lines to see them! I did get my pic with Mickey and Minnie.  From there we traveled to my cousins house to celebrate her wedding.  It was so great to spend time with my family and celebrate love!  Here's your shout out Mike!  Although the night time was freezing the days were nice. I wish I was still there catching some sun.

On Tuesday I had another rescan.  As you can figure, nothing has changed.  The tumor is the same size...no growth no shrinking.  I asked if I was going to have this the rest of my life and the answer was it is a slow growing tumor.  I took that as a medical yes.

I still had a glimmer of hope because today (Thursday) I went and got a second opinion at Johns Hopkins.  I thought for sure things would be different.  I just wanted to hear, we have seen this before and this is what we did.  I met with a neurosurgeon who was more interested in my syrinx.  Because I have all of this pressure in my lower back and it has affected my nerves he said my option would be a risky surgery that would involve having a tube from my back and drain in the chest.  I was like no thanks.  He also told me not to expect to "hit a home run" with results and walking without assistance again.  I told him I expect a grand slam.  Guess that's why I don't play baseball.  So he was going to meet with some pediatric oncologists to discuss my images and get back in contact with me.  

                      S t o r y o f m y l i f e.

It's so easy to get sucked inside this depressing chapter of my life.  For some reason I just can't.  I have such a great support team.  Things could be so much worse.  "Life altering, not life defining."  I need to make the most of my time while I still have it.  I mean really we all should be.  This is the last thing I expected to happen to me, but when I look back over the past year, there has been so many positives.  I feel so humble.  I began to realize what really matters in life, family, friends, losing my attitude (well most of it), and not taking every day for granted.  I even survived hunting season this year without much complaints.  I guess I realized that Jon has given up so much for me why should I give him such a hard time about doing something he loves.  I know what it's like to not be able to do things you once loved and I wouldn't wish that on anyone, especially my husband.

In case I don't update before Christmas, I wish you all a very Merry Christmas and a Happy New Year.  New year...new beginnings.  Thank you for the continued thoughts and prayers.  

  "When you figure out love is all that matters after all, it sure makes everything feel so small."  

Friday, November 14, 2014

A year ago I would've never guessed life would be the way it is now.


This weekend marks 1 year since I was in the hospital for my falls.  Of course they were just monitoring me and doing tests then sent me home.  A few weeks later I was progressively getting worse and that is when I had my first surgery...no cancer was diagnosed at this time.  

Fast forward to today, I am diagnosed with a cancer that I feel my doctors have no idea what to do and are just trying different things.  If a successful story to them is "it's not growing", what is the downside, it is growing?  And I spent all this time waiting for them to say "the dust hasn't settled."  It's been 4 months...I'm pretty sure the dust has settled.

All I want to hear is that they have a plan to get the "slime" out of my spinal cord and found a way to fix my nerves and I wouldn't have to rely on a cane, walker & wheelchair.  

It is so selfish of me to feel the way I do when people get to go out and live their life.  I'm stuck at home or stuck feeling like great lets make sure the wheelchair and the walker are packed.  I've been forcing myself to get out more and act as normal as possible but deep down I am fighting through being uncomfortable, seeing stares out of the corners of peoples eyes, or the pity look.  The last thing I need is pity.

Cancer has definitely changed my life.  Funny I feel it was for the better.  I appreciate everything that much more.  Even when I get a greeting card in the mail I put them on my table and read them again throughout the week.  Simple things like that make my day.  I woke up today to "I love you" post-its throughout the house.  He knows I'll leave them up until they fall off. 

Last week we had our 10 year class reunion.  I can't believe it!  I had such a great time reminiscing on memories and laughed so hard I cried.  It's been a long time since that has happened.  It's great knowing that even though we don't talk everyday my friends from elementary school are still there for me.  We may have went different ways in life but it's such a comfort...these girls went through times we thought were the hardest of our life back then to actually having to face a real hardship with me. 

Thanks for reading my babble...I just hope good news comes soon.  We submitted my results to John Hopkins and are waiting to see if my case is something they will look at.  I'm hoping to hear some time next week.

Your love and support mean so much to me, thank you!!

"No matter what it is, you're going to have the bad days, but if you have hope throughout, you won, no matter what the results. Life is so beautiful."      Diem Brown

Tuesday, November 4, 2014

Nothing is permanent in this wicked world, not even our troubles.


I had my rescan on Oct. 30 and should have put money on what the dr would say.  Nothing is growing, nothing is shrinking.  We are going to hold off on treatment and wait another 7 weeks and do another rescan. One positive was that my brain looks normal.  We were told my case was going in front of the tumor board again and would be called Monday evening....no phone call.  Which equals very frustrated family and me!  I realize that a dr cannot devote all of his attention to one patient, but when it is such a rare diagnosis would think they would put a little more effort into it.  

I know my last post was a little emotional, and who knows by the time I am finished with this, this it may be as well.  So what have I been up to?  Well hunting season is in full swing, so I am a weekend hunter's widow.  I have been making more of an effort to do dishes, make dinners, and am making soups to send to camp.  So far the boys enjoyed taco and potato soups.  Jon and I continued the tradition of carving pumpkins...being artistic he carved Remi & I settled for an upside-down jack-o-lantern. 

I'm still rocking physical therapy 3 times a week.  I am starting to walk on a treadmill.  I go a brisk 1.0mph and last about 3 minutes.  It tires me out fairly quickly but I feel like its easier to relearn walking this way then hold on to someone and the cane. However, without them I would not have met my goal...walking down the aisle for my bf's wedding.  Jon and I did it without any troubles.  I feel like I beamed the whole way down and up because we did it.  Now I just need to set a new goal...

 With my therapists, their  families and some of my family we completed a walk for Vision Walks.  We walked (I was pushed) along the river in honor of a little girl with Usher Syndrome. Usher Syndrome affects hearing and vision. It's was so inspiring for me, seeing everyone walking around with smiles on their face, embracing life.  I just wish bad things didn't happen to good people.

 Its times like these that make me realize a lot about life.  Even though I hate the fact that I have cancer and how much it has changed my life, in the end I will be thankful for it.  It just makes me realize how important being positive is, not letting the little things get to me, how important it is to be brave and stare fear in its face.  Some relationships will never be the same while others will have a deeper meaning.  It is crazy to think that tomorrow will be the 1 year mark since my first fall.  Although I have had many falls, I always got back up.  I wouldn't have gotten back up if it wasn't for all the love and support I have received.

I will keep everyone updated as can be.  I feel like a sitting duck!  Thank you again for love and support.