Just leap

It has been such a long time since I last updated. Things have been progressing for the positive. My last scans showed no signs of change. I've been working to get off some of my medicines and for the past few weeks I've been working on no brace on my left leg. The biggest change is I decided to take a part time job. It is very taxing and wears me down, but it's a good start to getting back into the swing of things.

So far summer has been going great. Jon and I have been enjoying rides up in the mountain most weekends. It's great to be able to sit back and enjoy the scenery. On one of our trips I decided to take a leap and jump into blue hole. I was sitting watching everyone jump and decided cancer isn't going to defy how I live my life. Life would pass me by so I did it...I jumped. And then I jumped again!

I hope everyone is enjoying their summer and taking leaps of faith.

Always go with the choice that scares you the most, because that is going to be the one that will help you grow -Caroline Myss

Tough times don't last. Tough people do.

I know it has been a very long time since my last update.  I have been dealing with some family health issues and to be honest, I just haven't felt very inspired.  Thankfully, things have calmed down.  God works in mysterious ways.

Over the past few days I have been thinking a lot about my past and growing up.  I thought about how hard I thought life was then.  What a good laugh I got.  I can remember stressing about telling my parents about a bad test or a bad grade, report card time, getting suspended over something so stupid I did.  I thought about all the relationships I had, the good and the bad.  I thought about all the times that I would get "yelled" at by my coaches and my back talking.  Everyone in life has relationships with so many different people for so many different reasons.  It was like an epiphany, all those hard times, those stressful times, those bad relationships only toughened me up for my future.  

Getting through the past 2 1/2 years of dealing with everything, I never wanted to imagine being on the other side of the table with someone I love, someone I devoted my life to, someone who was so strong for me when I couldn't be strong for myself.  If I hadn't had those blessons growing up I don't know if I would have been able to handle being the strong one.  Life has a funny way of preparing you for what lies ahead.

I've been striving for a stronger relationship with God, giving all my worries to Him, and I feel like He has been carrying me.  I am so grateful for my unanswered prayers and my answered prayers.  

At my last scan, I showed some signs of improvement.  My spinal cord fluid show some signs of thinning and a few "cysts" in my spinal cord showed signs of shrinkage.  My left foot is still not improving.  I'm coming to terms that I may have drop foot for the rest of my life.  If that is the only thing that the feeling doesn't return, I think I will be okay with that. Just have to keep calm and fight on!

No matter how good or bad you think life is, wake up each day and be thankful to God for life.  Someone, somewhere is fighting to survive.

Some good byes are harder than others...

2 years ago today I said good bye to Mercy hospital and made my way back home. I was so happy to be home after spending a month in the hospital  No more nurses coming in every 4 hours to wake up and give me shots.  No more hospital food.  That good bye was easy.   I knew I was going to have home PT care and would have to get adjusted to a newer life style, but I didn't care...I was home.  After home PT, I was sent on to outpatient PT.  Little did I know that I would make friends that would change my life forever.

Almost 2 years later, I had one of the hardest goodbyes I had to face in a very long time.  I shouldn't say its a goodbye, but a see you later.  When I arrived at PT, I was in my wheelchair with my walker not knowing what to expect.  Who knew I would have met someone who has made such an impact on my life.  Even typing this is hard for me because there is so much emotion.  I made a friend who helped to keep me positive, inspired, support me, a shoulder to lean on when days were tough for me.   They say friendship isn't about who you have known the longest.  It's about who walked into your life and said I am here for you and proved it.  So many fun memories were created on Monday, Wednesday and Fridays.  From things to hold on to, to sweet tea sippin', to drunken toddler walks, and dance moves, I will always treasure those in my heart.  I'll be representing BBR. Jon and I can't even begin to say how grateful we are for not giving up on me and pushing me to reach my goals. You will do great things.  I like to think that God sends us special friends to share our lives, very special people we can be ourselves with, talk with, laugh with, hope with, and believe with.  I'm sure He knows just how special you are to me and right now I'm hoping you know too.

Good byes are never easy, no matter what the circumstance.  I like see you agains much better.  Thank you for the great memories at PT and I am looking forward to new memories.

Goodbye 2015!

   As 2015 comes to a close, I sit here and think about all the good & bad things I have faced and overcame.  Just when I thought my family was close, events drew us closer together.  We were faced with adversity when my father was diagnosed with cancer.  It came as such a shock and reminder of what I went through. I was emotionless.  I didn't know what to think or how to feel.  As much as I wanted to break down and cry, I knew I couldn't.  It wouldn't get me anywhere.  I knew I had to be strong.  I now share a bond with my Dad that no one else has.  We made it through, probably one of the hardest parts of his life, together.  I understood what he was feeling without him having to say it.  We just got each other.  My Dad was able to retire this year and has been fighting his battle...I'm not sure if it is with boredom, golfing, or cutting down trees... I'm so grateful he is here to do those things.

  Earlier in the year we successfully pulled of a 60th surprise birthday for my Mom.  She deserved a day just for her after the crazy past few years.  She deserves more than just a day, she deserves more than I can even imagine.  Growing up, most of us want our mom's out of our business and now being grown up I can say she is my best friend & she is involved in all my business.  She truly has a heart of gold.  The strongest people are not those who show strength in front of us but those who win battles we know nothing about.

  There are so many things that I look back on and think, wow I am just grateful to be here.  My scans have not shown any signs of major changes, which is a good thing.  I try to fight every day that I am at the gym to make myself stronger.  I know key to getting better  my hands.  I feel I am in better shape now than I have ever been.  I have so many people encouraging me that I am inspired to keep doing more.  Even just looking back on my life, there will always be a before cancer and an after cancer.  As crazy as it sounds, my life with cancer is fuller.  I feel that this experience makes you a more humbling person.  I appreciate life so much more.  I feel I could never go back to the person I was before.  I found a quote that helped put things into perspective: "After a while I looked in the mirror and realized...Wow after all those hurts, scars, and bruises, after all those trials, I really made it through.  I did it.  I survived that which was supposed to kill me.  So I straightened my crown...and walked away like a boss."

   A new year, a new me.  A fresh start.  Is it really?  Tomorrow you will probably wake up and feel the same way you did today, maybe hungover, but you get the point.  The date 2016 will not change you.  YOU will have to change YOU.  I hope you wake up and realize a beautiful day begins with a beautiful mindset.  When you wake up, take a second to be thankful for all of your blessings, being alive, being positive.  The moment you start acting like life is a blessing, I assure you it will start to feel like one.

I hope you all have a very blessed, healthy New Year.  I hope you wake up everyday this year and are thankful for your blessings.  

Thank you for your continued love and support.

Anniversaries

Everyone has an anniversary for something....how long you have been with your significant other, how long it has been since a loved one has passed, how long you have been smoke free, how long it has been since you broke up with someone, how long you have been diagnosed with something.

November 5, 1994 I was in 3rd grade and was the flower girl in my cousins wedding.  I can still remember being in a car with someone who had their radio up so loud it made me sick so I switched vehicles and sat between the bride and groom while Zimas were being drank.  And if my memory serves me right, we had to stop at K-Mart for something....maybe it was hair tamer for my perm my mother gave me.

Fast forward to November 5, 2013.  I was so excited to wear a new pair of booties with a new sweater dress I bought to work.  I remember texting my cousin Happy Anniversary!  And the reply was, "my sweet flower girl."  Funny how little things like that stick in your memory.  We had finished the work day and I set the alarm to our building and when we were leaving I fell and luckily landed on chairs by the door.  My co-worker was concerned and I blamed it on tripping over the carpet.  I knew my leg just completely gave out, but I was too embarrassed to say anything,  November 5 2013, my first fall.

That weekend I had a girls shopping day planned in Pgh,  I limped around and tried to keep up with everyone.  I was on a mission to get Jonathan a watch for Christmas.  We were in Macy's going up the escalator and I went to step off with my left leg first and the next thing I know is I'm grabbing onto my best friend and falling.  Embarrassed again I put on a tough face and continued to limp around for the rest of the day.  I did get the last watch that was in Macy's inventory.  November 9, 2013, my second fall.

I knew Jonathan was at hunting camp and when I told him I fell, I got the vibe he didn't think it was a big deal...simple because I didn't make a big deal.  I figured I had something out of whack with my back and would go see the chiropractor the following week.  I continued to gimp around for a while and finally made an appointment.  When I got around to going to the chiropractor clinic it seemed I had pushed it off too long.  They were so concerned for me and wouldn't touch me.  They sent me to get an MRI.  I knew at work we were going to be short staffed so I kept sucking the pain up and my mom got me a cane to help me walk.  My god daughter* was to be baptized this weekend so I postponed my MRI.  That weekend, I got down on the floor with my niece and I couldn't get up.  We all were joking around about it, but I kept my poker face and didn't show the amount of pain I was in.

The next week begins and my chiro called and asked about my MRI, which I had yet to get.  She urged me to go to the emergency room because she felt something serious was happening.  I finally went and got my MRI.  The next day I was told I needed to come back and get another with contrast.  I still remember my mom calling and asking where I was and I felt like I was being babied and could handle getting another MRI on my own...little did I know I had to get a needle in my arm and I'm scared of needles.  I screamed at my mom for being there until she told me I had to have contrast dye injected into my arm through an IV.  At 27, yes I still needed my mom.

My mom was told to make an appointment with a neurologist immediately after my MRI.  My mom, brother-in-law and I went to the Dr.  After looking at my scan, he basically told me, there is a room at Presby waiting for me and I would  be seen.  Bam...just like that.  My families lives were forever changed.

After my stint in the hospital I was able to be there when my niece was born and hold her in my arms.  I have never held my baby niece and be able to walk around a room with her in constant fear that I would fall and be holding them.  She turns 2 this year.

We all cope in different ways...some bottle everything in, some become so angry, some accept it and move on and I feel that is exactly what I did.  2 years ago my life, my families life changed in a way that was never expected.  Today, I can't help but feel that time has been stolen from me.  Memories have been stolen from me.  I hate feeling like this, I hate the fact that my left foot doesn't respond to much, I mean I can wiggle my toes but that is about it.  I have been working so hard at getting my body better, but my left leg is just not responding.  I almost feel like the rug has been pulled out from underneath me and I feel abandoned.  Why I have all these emotions flowing through me I can't explain it.  I know I try to stay as positive as possible, but sometimes reality has a way of catching up with you and punching you in the face.  I'm blessed in so many ways and I need to refocus on what I have done in the past 2 years.  I'm beating the Dr's timeline of 2 years until I'd be walking again.

I just sit here feeling selfish and woe is me.  I know I can have days like today.  I had a good cry as soon as I got in my mother in laws car from PT.  Maybe that is all I needed, was a good cry and get it all out there.  I was in, what my husband calls it, "beast mode" at the gym.  I had my headphones on and I just gave it hell.  I guess when reality wants to punch me in the face, it better be able to take a good punch back.

I feel like this is all babble talk, but it makes me feel so much better getting it off my chest and out of my system.  Thank you all for the continued prayers and support you send my way.  On days like today, I sure can use them.

"Do not confuse my bad days as a sign of weakness.  These are actually the days I am fighting my hardest."

Is it 2016 yet?!

Well I had my rescan done and everything came back with good news. My nightmares did not come true. The only change was some fluid in a few of my syrinx increased. They did not seem to feel this was alarming.

I was starting to relax and refocus on getting stronger and to push forward. With my family's rough go in August, I was finally able to take a deep breath and exhale. Then I noticed my furbaby was having some eye issues, I thought maybe just allergies. We had taken her to the vet recently and had gotten ointment for them. I felt it didn't help and made an appointment.  Of course the day of her appointment her eyes were looking less cloudy, less glazed over. We thought about cancelling but decided to keep it. Now if you really know me, Remi is basically my child, my best friend, my support. She laid with me everyday when I was sick in bed and never left my side. Yes, I am a crazy mother of my dog. I felt like I was punched in the stomach when the vet told us she had Glaucoma.  It honestly brought tears to my eyes. Then when she said she could go blind and possibly lose an eye, I had to remind myself to breathe. This morning when remi and I woke up, Remi began to have a seizure. There we were laying on the floor as I tried to make it stop and make it go away. I was petting her, blowing in her face, feeling her racing heart. I thought to myself her heart is going to explode or my baby is going to die in my arms on my dining room floor. She finally came back and we laid there starring at each other . The first thing she did was lick my face. I may not have a "child" but let me tell you that was one of the scariest mommy moments I have ever had.  After a few minutes she got up as if nothing had happened and waited by her dish for breakfast while I was freaking out calling everyone for help. The vet told me since she seemed okay now to just monitor and if it happens again to video it so they can figure it out. Wow...I thought to myself yes, I'll video my "child" seizing on the floor and maybe while I'm at it, I'll post it to Facebook.  As she was there for me, I have done nothing today but be by her side.

I love the saying, whoever said diamonds were a girls best friend, never owned a dog. 

Sorry for the lack of excitement, it has just been a rough go at it these past few months. I still am staying positive that God has a plan for us all. Thank you for your love and support.

Pony tails...

Well for the first time in almost 2 years I am able to pull my hair into a ponytail. Lol I look like my neices and if I had a bow the style would be complete. But hey even if it's on top of my head it still is a ponytail!  Whoohoo.

I don't know if I ever talked about losing my hair or not. I have received numerous complements about people loving my short hair and keeping a pixie cut. Let's say this, I haven't had bangs since the 4th grade and having these side swept bangs drives me absolutely INSANE! I'm almost to the point of being to tuck behind my ear but dang, they are annoying. Instead of complaining about my hair, I am just blessed that I have it to complain about again!! I think keeping my hair this short will always remind me of the struggles I went through.  It's not that I don't appreciate the battle, but I just don't want to be reminded of it. I can't move on from cancer if I keep focusing on the bad. Cancer may be winning the battles but I know I will win the war.

I had a nightmare a few weeks ago that my cancer spread throughout my body and I had 6 weeks to live. Not going to lie, scares the crap out of me. It had me feeling down thinking of the all the what ifs.  I get that I have to live with this disease, but I can't imagine what would happen if it came true. Sitting here thinking about this brings to mind all the dreams I have of playing basketball again, walking, and most recently canoeing and rafting. These are the dreams that are going to come true.

Let go, let God.

My next scan is the 22nd, and having that dream makes me nervous.  Prayers and God will get me through this. Thank you for your continued support.

Battle through

Wow, summer is coming to an end already!  What a journey this 2015 has been already. The end of October will mark 2 years of tripping and falling for "no reason".  It's wild to think this would completely change the way I look at life and live life. If asked if I'm the same person that I was before cancer to the person I am now,  the answer is no. I feel like a completely different person.

First off, I feel like I grew up. At 26 and you receive news like I did was something I never would have guessed would have happened to me, let alone my family. I always think, I am glad God picked me to fight this battle for many reasons. I grew up and battled against a monster. I became mentally strong, I told myself every day I was going to get my life back. Thanks to PT I have been more physically fit and thanks to everyone who tells me how much progress I have made. Hearing this just makes me want to keep doing more, keeping pushing and not give up and not give in.
No matter what you are battling, remind yourself how strong you are, how far you have come. Always look forward. When I think about my diagnosis I think wow, a year ago I had no hair,  wasn't able to walk very well. And now I have a headful of hair and am walking with a cane and braces.
I had the script flipped on me this summer. Someone extremely close to me was diagnosed with cancer. At first I couldn't believe it. I was literally emotionless. I've never felt like that before. I thought to myself I am going to be their outlet, I am going to help them get through this because I am getting through this. I didn't really know how I was going to do it because I knew the emotions and questions running through their mind. Weeks before the surgery we stopped to eat and not much was said, but I really felt like we had the best conversation. We just got each other. When the day of surgery came, I didn't know what to expect other than you've been on the other side and I knew how I felt. I will admit it was difficult to see someone I looked to as my hero laying in so much pain and not being able to take it away. I know what it felt like to be laying in pain and no one could take it away. I just kept saying that you have to battle through it and we will get through it. We are still battling through it, but we share a connection with each other and can help each other. I want to inspire them from my experience. I want them to have a positive outlook on the future and recovering. It's a long battle, but I know together we will both come out as survivors. I think of the quote, "I may have had cancer, but cancer never had me."

Thank you for your continued support and prayers. I go for my rescan this month so hopefully all is well.

"Having courage does not mean that we are unafraid. Having courage and showing courage mean we face our fears. We are able to say, I have fallen but I will get up again."

Whirlwind

I'm extremely sorry for the lack of updates, as we know summer comes and it's the 4th of July and the next day seems like Labor day.

My family and I just got back from a wonderful vacation at Ocean City. We had such a great time, great weather, and great family memories. I was able to get in the water a couple of days with Jon and a boogie board. I would have give anything to have just run in and dive through the waves. Maybe next year. I am blessed that I was even able to get into the water.

There hasn't been much new on my progression. I think the week off of pt was a much needed and welcoming break. I was able to just relax. I am sure tomorrow I will be feeling a little sore after today's session, but like I was told, hard work ain't easy.  I feel like my left foot has taken a step backwards and that is frustrating to me. Hopefully in the next few weeks it will be back on track.

I've come to the realization that cancer just completely sucks. It hits you when you least expect it to and knocks you down some pegs. I know I have been strong and positive throughout this chapter of life but when it flips back on you to be strong and positive for someone else, I get a whole new perspective. As much as I want to ask God why now, I know he has a plan. I am still unsure of how to be a shoulder to lean on and help others stay positive and dig deep to battle. I feel when I was diagnosed I just accepted it and kept battling. It's a choice, you either want to battle or you want to give up. How my parents raised me was not to give up or give in. When things were tough for me I just kept thinking of the poem about the footsteps with God. He carried me through the battle and I'm sure he's not done yet.

I don't want my pain and struggles to make me a victim.  I want my battle to make me someone else's hero.

My family  could use some prayers in the next few weeks. I appreciate all the support you all have given me because I know without it I would not be who I am today.

Some positive news...

I had my rescan this past week and got a great response. Although the cancer is still present, it has not grown. The Dr's. were so impressed by my strength and walking capabilities. Having my Dr say she is blown away by how strong I am just makes me want to fight harder and get stronger. It is just so motivating to hear this. I push myself at therapy and now to see my hard work paying off...it's just amazing, leaves me speechless. I haven't had a dr this excited about my assessment in a long time and it feels so good. It's the first time I didn't leave my appointment mad, I had a smile on my face.

 My neurosurgeon wants to do a follow up appointment to check things out. When I was first diagnosed he said it would be 2 years before I'd be up and walking. Hard work, determination, a support system and a positive attitude can get you a lot farther than laying around feeling sorry for yourself. From day 1 I knew I had to fight. 

 Cancer teaches you a lot about your will, who you are, and I think most importantly, slow down and realize what is important in life. I know I'm not the same person I was a year ago. A line has been drawn with before cancer and during cancer. I know I'll never be the same person I was before and I am okay with that. 

Thank you for the continued love, support and prayers. It is truly heartwarming having you support me.

"Victory doesn't come from a cancer free diagnosis but on how you choose to live your life while you have this disease. That is why you have to strive to be happy." ~Jose R. Arevalo, Non-Hodgkin's Lymphoma Survivor

It's just one of those days!

I know it has been a while since I have last updated, we have been keeping busy since it has been getting nice outside!  Over the past month, we had a very successful golf benefit, celebrated my dad's retirement, celebrated my husband's 35th birthday and among many other things!  At my golf outing, I took my shoe off and was able to drive a golf cart around with ease!  This only made my itch for driving again greater.  We celebrated my Dad's retirement in May as well.  We all showed up for his last hour of work and sent him out in style.  My dad was and still is a hard worker.  He and my mom made sure all of us girls got everything we wanted growing up.  I tell my husband its not my fault that we are spoiled, it's my parents!  I wanted to do something different for Jon's birthday and had help coming up with the idea of taking him to a casino, since he has never been to one.  We went to The Meadows, conveniently located by the outlets. Jon had never been to these outlets before so we christened him...and he hated it.  I made out quite well though =) .  The casino was a lot of fun, I enjoyed watching Jon do something new.  We had such a great time with friends and family.  Jon and I also celebrated our 3rd wedding anniversary.  We have been together for 5 years now and it still feels like yesterday that I met this guy at a bar in a softball uniform.  I always knew, from the beginning, that I was going to marry this him.

I go for my next scan in a few weeks, so fingers crossed I am still progressing in a positive way.  PT is going great as well.  We are still walking with a cane & started to walk some without my braces on.  It's an on-going battle between the braces and I, but at some point I think I will win the war.

When I started this post I was filled with anger and resentment towards everything that I've been trying to do today.  However, in typing out what I have been up to, it has me shown me how blessed I am.  So what has me frustrated?  Stupid things...like how my husband planted a shrub that I don't like, or finding his work clothes with normal clothes, not being able to carry laundry up and down the steps, walking out to the garage only to find no potting soil for a railing pot.  I should be focusing on how lucky and blessed I am that my husband does take the time to plant flowers in our empty flower beds and actually does the laundry and hangs my clothes that don't go in the dryer up to dry.  And how he will stop and get potting soil on his way home from work so I can plant some flowers after working 10 hours today.  Maybe it is good I get myself mad and worked up so I can see how fortunate I actually am.    God does work in mysterious ways!

Thank you all for your prayers and support.  As frustrating as it is to have things taken away from me, its refreshing to see my blessings.

"They say love is blind.  I disagree.  Infatuation is blind, love is all-seeing and accepting.  Love is seeing all the flaws and blemishes and accepting them.  Love is accepting the bad habits and mannerisms, and working around them.  Love is recognizing all the fears, insecurities, and knowing your role is to comfort.  Love is working through all the challenges and painful times.  Infatuation is fragile and will shatter when life is not perfect.  Love is strong and it strengthens because it is real."

Foot steps

It has been a while...

Dare I say that life has been going great?! I shouldnt say it is all roses and butterflies, but things are progressing in the right direction. Reflecting back over this past year and to where I am now is unbelievable. For one, I have hair, and for two, I have been walking with a cane unassisted  (most of the time). PT is going awesome. I am forever grateful for the group that I work with. They really are making me stronger, wiser and just full of determination. I truly look forward to Monday, Wednesday & Friday's. Not only do they treat me like family but they treat my family as one of their own. I have the up most respect for all of them. Each week is a new beginning as I set small goals for myself to the main goal. I'll settle for walking now, but eventually maybe even running again one day...who am I kidding I hated running. Maybe golfing...the last time I tried to swing a club was a disaster...yet comical. Thank you Chris for videoing the epic fall.

As the weather is finally breaking, I'm trying to be more active. I went yard selling with some of my girlfriends this weekend.  This was my first time and now I can't wait for the next one! The weather was perfect today so I was able to finish painting our patio furniture while Jon pressure washed the deck and sidewalks.  This is all because of your support that we are able to do this. Last year we were able to widen our sidewalks for me and build a new deck that I could function on.

All of your support, encouraging words, thoughts and prayers fill Jon and me with so much gratitude. I know that good things happen to those who wait but I'm the type of girl that doesn't want to wait...I want to do what I can to get it. I know that God is with me and any time I think why or feel down I always think of this to help me get through:

One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.

After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.

This really troubled me, so I asked the Lord about it.
"Lord, you said once I decided to follow you,
You'd walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don't understand why, when I needed You the most, You would leave me."

He whispered, "My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."

- by Mary Stevenson

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

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 :)

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"

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!

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."  

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

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.  

  

I almost deleted all of this after I typed it...

3 weeks ago I started watching a new show on Fox called Red band society.  I saw the previews of teens that we're facing a challenge in their lives.  One had cancer.  His cancer wAs nothing like mine, he(Leo) had already lost his leg and his roommate (Jordi) also had cancer in the leg, scheduled to be removed the next morning.  At the end of the show he asked if it hurt.  

I've been asked how I am dealing with things and getting along and it give your predicted answer of I'm doing great, 1 day at a time, have my ups and downs but we are making it or pt is going great.  All of this is true but yes I do have "me days" were all I do is cry and just want my life back, or what did I do to deserve this?  Typically I pull myself together before Jon gets home from work and put a smile on my face.  He always sees through this but one thing he does is gives me my space.  He doesn't try to make it better, because we both know he can't get rid of the cancer and difficulties it has not only caused me, but also our marriage.  I am a lucky woman who found such an absolutely amazing man.  He works 50 hours a week, comes home and does the dishes and the laundry, Although he still puts work clothes with normal clothes, he still manages to get it done.  He also puts up with my daily I don't have an appetite, make whatever you want for dinner.  

As a new housewife, before the cancer, I used to attempt new recipes in the crock pot.  I considered myself the crock pot queen.  Then I got on a soup kick last winter and made 4 different soups in a day, just because I wanted to send them down to camp with him during hunting season.  It made me happy doing that for him.  Now it is such a process, is the crockpot on the bottom shelf where I can reach it, do we have all the ingredients to make dinner and surprise him.  

Since I can't drive, I rely on everyone on my family.  My dad calls himself my chauffeur, my mom comes up just about every day after work to help with everything possible & to see me, our cousin cleans our home, Linda drives me to and from PT and does our dishes to help take some of the load of her son.  It's just crazy to think that this is my life. When our parents are supposed to be enjoying the easy life, here they are and would be here for us in an instant.  And Lord knows how grateful I am because of all that they do. 

"What hurts the most is not that it is gone.  What hurts is remembering it what was there." Leo.  Now I'm not losing my leg or anything to that extent, but I have lost a lot of use of my legs.  I don't want this entry to be a woe is me, but when your world is flipped upside down it makes you realize all those basketball games, track and cross country meets (even though I hated them), softball gAmes, riding a bike, driving a car, ice skating, walking remi, cooking, crawling into bed, my husband, just makes everything appear that much more important and makes me ask, did I take it all for granted?

I never thought a tv show would get under my skin the way this episode had.  So then Jon buys me The Best of Me to read. Well as I typically am, I was an emotional sap and cried through it.  Then when I got to the end and her son feels he has had years of his life stolen from him, I was like that is exactly how I feel.  Maybe I'm having an epiphany or something but it feels good to let it out! Throughout this journey we have made the best of it.  I was known as "the tank girl" at the beach and made unforgettable memories.  I flew to NY in a private jet, I even had a Mohawk! 

As much as I can sit here and think of all the negatives I can probably outnumber them with the positives.

Thank you for taking the time to read how I felt tonight, but most importantly thank you for your love and continued support.  

  "Luck isn't getting what you want.  It's surviving what you don't want."