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"




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.  Well...my 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."

 

 



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 me...it 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