Friday, January 31, 2014

God gave me you for the ups & downs

Finally starting to feel a little better!  Between radiation and therapy I have been exhausted.  Today my legs were pretty rubbery & weak...but we pushed through and were able to complete my exercises.  We also ordered my wheelchair and I got my loaner.  I ordered one that is a pink tone =) .  I am getting excited for Monday to finally get to go home!  It hard to believe it has almost been a month since I have been in the hospital.   I cannot wait to see Remi!! 

Today at radiation I couldn't fall asleep for once.  As my mind wondered  all I could seem to think about was the day I met Jon.  I skittishly went to the Paint Room to meet up with Kayne and have a few drinks.  Kayne introduced me to Jon and we got to talking and a few drinks later he asked for my number.  I went to work the next day and said I met the man I'm going to marry!  A few days later I'm waiting for "the man I'm going to marry" to call or text me and nothing!  Finally I received a message on Facebook from him.  We went to the Connellsville VFW(so romantic)  for a drink and moved very slow in our relationship.  Finally after a date at the Paint Room, Jon walked me to my car and asked for a kiss...such a gentleman!  My mind then wondered to the night Jon asked me to marry him, down on one knee with Garth Brook's Shameless in the background.  Laying here writing this I look to my left and see my husband laying in this pathetic looking cot for the past 2 1/2 weeks and never leaving my side.  I don't know if I would have made it this long without crumbling.  "You stand by me And you believe in me Like nobody ever has When my world goes crazy You're right there to save me" our wedding song Tim McGraw My Best friend says it best.   I will say I am a little nervous to go home and have him be my trainer...he really pushes me to my max!

I have noticed that I am getting cold more and tired.  The radiation technicians said my immune system is more than likely going to start to take a hit right now.  I discovered I like Ensure Immune drinks so I will be drinking them like crazy.

Therapy went well today.  We worked on how to get down on the floor and how to get back off the floor.  I was able to complete the 4 steps 3 times.  We also worked on some exercises on the parallel bars...these are the hardest for me since my hamstrings are so weak.  I have tomorrow off so I hope my legs will recover and be rested for Sunday.

Thank you for the love, support and prayers.   

Count your smiles instead of your tears.  Count your courage instead of your fears.

Thursday, January 30, 2014

There's always tomorrow!

Hey everyone! Sorry for the short update, I haven't been feeling well the past few days!

Radiation has been going well. They said I will start to really feel the effects the deeper I get into treatment. I've just been very tired and cold lately.  Last week I was hot all the time, now I'm cold!

Therapy is also going well.  We have been walking 150 feet everyday and really starting to focus on my hamstring muscles.  Tomorrow I will get to pick out the specs for my wheel chair. I can't decide a color yet... I'm leaning towards pink.

Thank you again for your love and support. Doing these past few days it has really encouraged me to dig deep!

"The days you don't want to do it turn into the best work outs"

Tuesday, January 28, 2014

Wake up with determination, go to bed with satisfaction

Sorry I didn't update yesterday, I wasn't feeling very well.  I think I was asleep at 5:45!  I had an appointment with my neurosurgeon yesterday before treatment.  Since my shunt in my back has failed we discussed options.  If we revise the shunt I would have to take a week off of radiation.  I told him that I want to wait until after radiation and I am making such great progress at therapy.  After radiation, I am pretty sure the shunt will be revised.  The shunt is to act as a drainage system for the cyst that are throughout my spinal cord.  They drain the fluid out and the cyst is to decrease.  When they first placed it in, the MRI showed that it was working; however, they feel the tumor cells have clogged it.

Therapy is going great!  I have been walking 150 feet everyday!  Unfortunately, my doctors still want me to get my heparin shots to prevent clotting.  Figures!  We practiced walking up and down curbs today...going down is a bit scary...hopefully with a little more practice I will get it down.  I still feel  I have been getting better each day.  I haven't been able to do anything with my left foot in some time, but I was able to wiggle 2 toes!  My right foot has been responding as well...I'm able to wiggle just about all my toes!  We have also been using a muscle stimulator, today we used it on the nerves/muscles in my shins that helped work the muscles that control my feet.  With that, my feet were able to pull towards my body.  I feel as though my drop foot on the right side is slowly being corrected but my left is still the same.  Drop foot is just how it sounds.  My left foot hangs down and I am not able to pull it up towards my body.  I wear AFO braces in my shoes that help hold both feet up and not let them drag while I am walking.  While I sleep I also wear boots ( I call them clod-hoppers) that help keep my feet up.  If I sit for a long period of time my feet will turn blue and be freezing cold.  I have been checked for blood clots and everything was normal.  Drs feel it is just because my nerves are not responding. 

Today at radiation a machine was down, so we had to wait about 2 hours for treatment.  I must be good at napping because once again I slept through the majority of treatment.  The nurse said since this was treatment 5 I will probably begin to feel the effects more and become pretty tired after.  At least tonight I made it past 5:45!

Hope everyone is staying warm!  Every morning I wake up I look at the view from my window and see how frozen the river is!! 

The continued love and support is amazing.  Thank you to Alexander's Pizza & Subs for holding a benefit buffet.  Jon & I greatly appreciate your support for our fight against cancer. 

"A strong person is not the one who doesn't cry. A strong person is one who is quiet and sheds tears for a moment, and then picks up her sword and fights again"

Sunday, January 26, 2014

The best thing about memories, is making them

  What a great day we had today on my day pass!  Shopping went well...I got some new work out clothes, shirts & a Steeler jacket.  It was just nice to be out and about living a normal life!  It is interesting seeing things from a "chair" perspective.  When I'm walking again, I will be sure to help anyone in a wheel chair reach things on higher racks!  Aisles are not that wide and I crash into racks or run them over. It could be it's my driving skills....but like any female out there, I'm an awesome driver.

Dave and Busters was a hit.  Nothing makes me happier then seeing my nephews and nieces with smiles on their faces!  Luca was a wild man running from game to game!  We took my walker with us so I could stand and play a few games.  I was able to play a basketball shooting game & skee-ball.  The only problem I had was standing and reaching down to pick up the balls.  Thankfully I had Bray help with the skee-balls and my dad and Jon for help with basketballs.  My shots may have been off but it was great holding a basketball again!

Sorry for such a short update, but I am extremely tired tonight and know I have a busy day tomorrow!!   

All the love and support is amazing...thank you from the bottom of my heart.

"Our family is a circle of strength and love.  With every birth and union it grows.  Every crisis faced together makes the circle stronger."

Saturday, January 25, 2014

All things are difficult before they are easy!

Today at therapy we had our ups and down right hard work!  I told my PT he worked me today and he said, "Good, I did my job."  I was able to complete  walking 150 feet two times today!  Now I just need to continuously do it!  I was happy to achieve my goal; however, it tired me out.  We did some new exercises today standing, opposed to laying on the mat.  I feel like it was the hardest workout I ever did!  I had such a hard time being able to do anything that involved my hamstrings and calf muscles.  A lot of that is affected by the nerves that are clumped together in my lower back.  Hopefully, through the radiation that will shrink the tumors and release pressure off of my nerves.  I made myself fight through to complete the exercises but it was a struggle.

I made the decision to cut my hair short before I start to lose it and got an awesome bob from Samantha tonight.  It feels so light and healthy...I love it!  I feel like it will be an easier transition when the time comes.  Jon has never seen me with short hair before!  I will definitely miss long hair and being able to braid it...not that I could ever braid very well!

Tomorrow is a big day for us...I have a day pass!  We are able to leave the hospital for the day and do whatever we want.  We decided to stay closer just so I do not get too worn out and head to the Waterfront.  I'm excited to get a little shopping in...I haven't been anywhere since early December!!  I would even be happy going to the Dollar Store!  We are then going to head to Dave & Busters for dinner and games with the family.

Hope everyone has a safe and fun weekend!

Once again, thank you for your thoughts and prayers.  Every card I receive brings a smile to my face.  You all have a special place in my heart.

"It's hard to beat a person who never gives up" Babe Ruth 

Friday, January 24, 2014

One small positive thought in the morning can change your whole day!

Another great day at therapy!!!  Today I walked my furthest...140 feet!  It gives me such motivation for tomorrow and next week.  I absolutely hate needles, so shots & blood work are a big deal when I have to get them done.  I get a shot 3 times a day to prevent blood clots; however, when I am continuously walking 150 feet I will not have to receive the shots!  My leg exercises are getting better as well, Jon once again did not have to help me complete any of them.  I also increased the weight in dumbbells while working my upper body. 

The best part of therapy today was getting to play Wii.  There is an older gentleman here who was having a bad day and the OT crew wanted to cheer him up.  He enjoys bowling so we bowled together.  It gave me a lot to think about and appreciate.  I was able to stand and practice balance and moving my arms at the same time.  Unfortunately, he is in an electric chair, will probably not be able to stand again, and he had a hard time releasing the buttons on the controller.  We had fun together though, and said we will be Wii bowling buddies.  It's an amazing feeling to help bring smile to someone else who is having a bad day.  I may have cancer and it may have altered my life, but there is always someone else out there that is fighting a bigger battle.  Even if it was a simple game of bowling we shared together, I am glad he smiled, laughed and cheered when we both got strikes.

Radiation was a breeze today.  In order to keep my mind off the headrest & mask, I thought of my in-law's cottage and how I can't wait for this summer to be down there fishing.  I will have to let my father in law he needs a bigger boat to accommodate me now ;)  .  Just the thoughts of being in a quiet and relaxing atmosphere with my family was enough to make me be at ease, forget about the headrest and take a nap!  Before I knew it they were waking me up!  So far the only side effect I have is dry mouth.  Chewing gum has been doing the trick for now.  I will not be receiving any radiation over the weekends. 

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." -Leo Buscaglia 
Jon and I both are deeply moved by all of your love and support.  Thank you doesn't even being to describe how we feel. 
"Today will never come again.  Be a blessing.  Be a friend.  Encourage someone.  Take time to care." 

Thursday, January 23, 2014

Tough times never last, tough people do!

 I have 2 treatments under my belt!  The worst part about the treatment is the head rest!  I swear it is the most uncomfortable thing I have had to lay on in my life!!!  No one can come up with a head rest that will allow the radiation to get through yet.  While I am in treatment I have to wear a mask that covers my face and shoulders and is clamped to the table.  It is a mesh type material that I can see out of, but I keep my eyes closed and try to catch a nap!  The treatments are only 30 minutes.  Since I did get a pink gun for Christmas, the mask is my first target when I can shoot again!  So far I haven't gotten sick from treatment, I just get very hot and about 2 1/2 hours after I am completely exhausted.  I don't think I will be having any late nights for a while!

Therapy went awesome today!  Today with OT I made muffins.  We practiced getting items from the cupboard, fridge, mixing, and getting in and out of the oven.  I can't tell you how they tasted, but we heard they were very good!  While at PT, we walked about 80 feet!  My goal is to be at 150 feet next week!  I was also able to complete the 4 stairs two times.  I find it hard to believe radiation can work that fast, but my left leg responded so well today during exercises.  Jon usually has to assist me and today he didn't.  Maybe its mind over matter...hopefully tomorrow continues!

I met with another oncologist today and he went over everything with me again.  Unfortunately, they are still presenting my cases to all of the cancer boards because they have not seen anything like this before.  They said it is so rare.  There are a few types of different cancers, but they are all so closely related to each other.  Regardless of what type it comes back as, the best treatment is radiation.  I hope before I am finished with radiation they will have answers.  They will be sending my biopsies to NYU and possibly to St. Jude's hospital.  I guess it is best to have multiple eyes looking at everything!  Who knows, maybe I'll be famous in medical history!

Thanks again for all of your love and support, I wouldn't be able to do it without all of you!

"A negative thinker sees a difficulty in every opportunity.  A positive thinker sees an opportunity in every difficulty."

Wednesday, January 22, 2014

You can't stop the waves, but you can learn to surf

While I had a free moment in between my therapy sessions & radiation I thought I'd give an update in case tonight I am tired...
GREAT morning session at therapy!  I was able to dress with a walker, stand and brush my teeth and I walked a hallway with no breaks.  I was also able to stand for close to 6 minutes and complete 4 steps.  Each day proves that I am getting stronger and better!  It is funny to think how active I used to be in the gym a few years ago and now getting back into lifting how incredibly weak I am!  It feels good to start being active and healthy again.  I even drank a V-8 Fusion (Pomegranate Blueberry)...highly recommend!
While doing my exercises and taking my short breaks I was looking around the gym and said to Jon, I just can't believe this is our life right now.  Not that it is a bad life or I am feeling down, but it was just so emotional.  My mind then wondered to the girls with the long hair and knowing this will be my last week with long hair, it made me pretty sad.  I know it is only hair and it will grow back!  Jon said he is so excited that he will not have to pick hair out of the sink, tub, his clothes..basically everywhere!  Thankfully Jon made me use my emotions to bust through my exercises I usually struggle with and was able to complete them with little assistance. 
I am not sure why I am so emotional today, I'm not too scared for the radiation treatment...I'm anxious to begin the treatment to start the road of recovery.  I almost feel a little resentment to the treatment because of the high chance of what it will be taking away from me.  Jon and I were in no rush to have children...we wanted to enjoy each other and live the life we wanted for a while.  Even having a dog was a process... I wanted to bring my golden retriever with me, Sadie, but she was enjoying life in the country with my parents.  So I decided no dogs. in-laws had puppies and I thought it would be fun to play with them...and you know how that works...Welcome home Remi.  Being a "fur-mom" is completely satisfying for right now.  I wouldn't have it any other way.  But being married for 1 1/2 years and hearing I will more than likely not be able to have children is a lot to swallow.  Jon has maintained the best attitude, "I want you more and you to be healthy."   It's just hitting me today that while I am in the machine I know what it is taking away.  Of course there are so many alternatives in today's world and this should be the least of my worries but it is just hard.  We have nieces and nephews that will always feel like our own and will keep us plenty busy! 
Ok enough of being sad..I just needed to get it out!  After my treatment today I plan on radiating positive vibes!

"You may not be able to control every situation and its outcome, but you can control your attitude and how you deal with it."

Tuesday, January 21, 2014

There's a positive side to everything, it just takes a positive mind to see it!

Well, the first day of treatment did not happen today.  When I got to my appointment they wanted to verify the locations of where the radiation will be entering.  I went into today with low expectations only because I didn't know what to expect and I am glad I did!  I'm happy they made the decision to double check everything before starting treatment!  Tomorrow at 3 is when my first treatment will take place!

Today at PT I had a relatively easier day.  We did some leg stretches and exercises.  I was able to move my toes a little on my right side..a major improvement since last week!  My left side is still not responding, but mind over matter and hopefully my nerves will wake up!

I also just wanted to give my mom and husband a big thank you for putting up with my crabbiness today!  Without all of your love and support I would be struggling.  A little ice cream and soft pretzel goes a long a nap! 

One of the hardest things I have been facing is being away from my dog, Remi.  I know some people don't understand the bond between a human and an animal, but when I was home having her snuggle beside me was enough to make me forget about reality for a bit!  I am sure she is enjoying her vacation with her BFF, but I wish I could just smuggle her in my room for the night.  "Who ever said diamonds are a girls best friend never owned a dog!"  Court & Luck, thank you for taking great care of means the world to us.  "Best friends are people who make your problems their problems, just so you don't have to go through them alone."

Once again, thank you all for the love, encouragement and support you are providing us.  We are still in awe.

"Determination - a fixed purpose, the power and will to persist, resolve, to have a drive, to have the grit, to go the distance, to be hell-bent on reaching a goal and getting it done no matter what."

Monday, January 20, 2014

Don't deny the diagnosis; try to defy the verdict...

The day is almost here!  Tomorrow will begin my first round of radiation treatment.  I have received many questions on how I feel about it.  Honestly, I am worrying about tomorrow, tomorrow.  I really don't know what to expect! Of course I am nervous, but who wouldn't be?!

This morning was a little hard for me.  While at SCI (Spinal Cord Injury) Rehab I work with Occupational Therapy and Physical Therapy.  My left leg was just not functioning this morning so OT was difficult.  We practiced getting in and out of a bathtub, getting in and out of a car & trying to stand and separate a deck of cards at the same time.  I was having so much trouble being able to do the simple things I used to never think twice about.  I had a brief break between sessions so I came back to the room and relaxed.  At my PT session, we stretched my legs and did some muscle building exercises.  The question came, "Do you want to take some steps?"  As much as I wanted to say no I knew I had to push myself and on turn my bad morning around.  As I got out in the hallway, we got me up and with the walker and 2 breaks I was able to go about 20 feet!  After lunch I had visitors come and for my last OT session I knew I had to make up for my bad meeting.  With the motivation and encouragement surrounding me, I was able to stand the longest I had on my own, 5 minutes!  Jackie Eckenrod, thank you for reminding me " Just don't forget that it's only a bad day--not a bad life."  I wanted to make sure I finished my bad morning on a positive step for tomorrow!

As many as you know, I am an extremely picky eater.  I still have yet to eat a salad! Becoming sick has made me realize that a healthy lifestyle change is what I need to partake in.  I have been looking up smoothie recipes that will help boost my nutrients, immune system and keep me healthy while I undergo treatment.  If anyone has any tips/recipes for these it would be greatly appreciated!  I want to make sure I am taking care of my body.  I have lost just about all my muscle in my legs and while I am under treatment I want to ensure I am helping my body as much as possible.  I have a goal to be able to walk in and out of treatments!

 I can't even begin to describe the feelings I have running through me right now from the out pour of love and support I have been receiving.  Everyday my mind is blown.  Each thought and prayer is motivation for me to get better for all of you.  My heart is beyond touched.   I don't think you will fully understand how you have all impacted my life.  Even on my darkest nights, all your thoughts and prayers are my brightest stars.

"Worrying does not empty tomorrows troubles, it empties today of its strengths."
Mary Engelbrelt

Sunday, January 19, 2014

Keep Calm and Fight On!

At the age of 27 I did not ever expect my life to be this way.  After marrying the love of my life I planned on a life of bliss. Who doesn't?  I contribute most of my strength to my husband, he is my rock.  Jon I hope you know how much you mean to me.. "Life with you makes perfect sense, you're my best friend."
After going through test after test, surgery after surgery, I never imagined laying in the hospital bed and hearing my doctor diagnose me with cancer.  Of course my first thoughts are holy crap...hold it together, breath, don't cry, we will get through this!
So far I have been diagnosed with Syringomeylia, a disorder in which cysts form in the spinal cord.  It has been very frustrating at times, my doctors are still not sure what type of cancer I have, other than it is a form of glioma.  What this means is that my spinal cord fluid is circulating through my spinal cord and brain carrying cancer cells.  It is common in children but rare in adults.  I have suffered loss of my motor skills in my legs and am currently in a spinal cord injury rehabilitation facility.  While waiting for my radiation treatments to start, I have been learning to become independent in a wheelchair and rebuilding strength in my legs.  We have been working on taking steps and standing again!  It is such a positive atmosphere here and I am so fortunate that I am making progress! 
So how am I dealing with the stress and realization of things?  Easy... staying positive and strong.  While I had to digest the diagnosis of cancer, I realized I had 2 choices....accept it and fight like hell or I can't believe this is happening to me!  My husband and I decided we are survivors and there is no turning back.  Of course there are moments that I want to break down and cry my eyes out, and I know it is perfectly okay to do that.  I also know that with my support system, I have the strongest team out there.  Support is everything.  Cancer just doesn't affect affects everyone in my life. 
It is amazing how you spend most of your life thinking how the materialistic things are the most important and when you get news like this it gives you an entire new perspective on life.  "If it weren't for cancer, I'd say I had the perfect life.  But if it weren't for cancer, would I even realize this?" (Charolette Lawrence).  
The kind thoughts, words, love & support is extremely heartwarming and has made me speechless.  I am for once at a loss of words.  Jon and I are completely humbled by the selfless acts of generosity we have been receiving.  All the words of encouragement touches my heart and brings a smile to my face.  Sometimes, the best things in life are not things at all, but the people who make you feel loved and cared for.  I hope each and everyone of you know you have touched our lives and we would not be able to get through this chapter of our life without your prayers and thoughts. 
I start my treatment this week and will plan to update as often as possible.  I find inspiration and motivation by quotes, so I plan to leave a quote each time to keep me moving forward:
"Courage is being scared to death, but saddling up anyway."  John Wayne