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 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 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 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 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 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 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 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.  


Friday, October 3, 2014

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."

Friday, September 12, 2014

Count your rainbows, not your thunderstorms.

I got a message from an old classmate about frankincense oil.  She provided me with this link to an article about taking frankincense to help fight cancer.

After reading it I started to research this more and more my husband and I decided to try it out.  I received it yesterday, Sept 11, which marked 1 month since my last treatment.  You can take this topically, internally or by aroma therapy.  Well I tried internally and it was absolutely horrible.  I mixed it with my tea and had to hold my nose to get the rest down.  I kept researching different ways to take the oil and read about rubbing it directly on the tumors, massaging it on my feet, putting drops in a hot bath.  I also read about mixing it with coconut oil, which is used on me while I am at PT.  We  are going to try to mix them together so when we massage around my spinal cord.  Let's hope this works!! 

As far as walking, its s long road!  I feel my legs are getting stronger, of course not as fast as I would like.  My hair on the other hand, is growing like a weed.

Thank you for the love and continued support.  It is humbling to know how many people care.

  "Believe you can & you're half way there!"

Saturday, August 30, 2014

Rescan Update

Well after having a great birthday this past Monday we faced the rescan on Tuesday.  Once again we were told that there was no change and the tumors did not grow nor shrink.  I asked if I am going to have cancer the rest of my life and the answer was yes.  Not the way I planned on starting 28 out.  How do I even prepare for that answer?  How do I even digest it?  Will the tumors ever let up enough to free my nerves so I can walk, bike, live my old life?  I will not be receiving anymore treatments right now, they want to wait until Oct 28 and rescan me...again... and see if there is any changes.

To be honest, I try and stay strong for my family and I keep reminding myself that there are so many people that have it worse than me.  I still take one day at a time and put a smile on my face.  PT is now my main focus.  I set a goal to walk down the aisle at my best friends wedding in October.  I know I may need some help, but if I can make it with a cane that will be a big accomplishment for me.  I feel I am the only thing standing in my way!

I know I have been in so many of your thoughts and prayers, Jon and I are forever grateful for that.  Thank you.

People cry, not because they're weak.  It's because they've been strong for too long.  
Johnny Depp

Sunday, August 10, 2014

Fun in the Sun

Well we just returned from OC MD yesterday and had a great vacation.  Saturday morning rained but we were still able to go to the beach in the afternoon.  The waves were crazy this year, I guess from the hurricane that went out to shore instead of inland, produced big waves and riptides.  Finally on Friday I was able to go in the water.  I just floated on a boogie board...better then nothing!  I always hate leaving the beach, its such a sinking feeling in your stomach, but coming home to Remi always makes it disappear.

So tomorrow is supposedly my LAST Avastin treatment.  I won't know anything until the rescan on 8/26.  Health wise I have been feeling okay.  I think I am still tired from the travels yesterday.

Thank you all for you love, support & prayers.  I still get get well cards and I got one 2 weeks ago that I love:

Life is hard sometimes-
crazy, mixed-up, messed up.
And there you are,
in the middle of it,
just doing your thing...
being strong and brave and beautiful 
like it's no big deal.
But let me tell you girl,
it is.
Not everyone can do what you can do.
Not everyone can handle things
the way you can.
While you wonder sometimes
if you are doing okay...
the rest of us are just watching in wonder.

Tuesday, July 15, 2014

No News is good news

Well at my last scan on the 3rd, the Dr said that there was no major change in the tumors.  I was pretty bummed because I was really hoping they shrunk more.  I have 2 Avastin treatments left, I have one on 7/17.  I am hoping and praying that the tumors shrink with these next 2 treatments.  I then asked the dr if i would ever walk normal again.  His reply was "a lot of prayers, hopes and hard work."

Maybe that is what I am bummed about...walking.  I was so active before and now its like I can't do anything.  Everything is a process and I can't seem to get past that.  I know it is going to be a long road to recovery...but no one seems to know how long.

 It is pretty bad that I look forward to physical therapy.  I love the therapist and for a few hours they make me forget I even have cancer.  PT is going great.  They feel I have made progress, which is always a plus.  I walk with a cane and my therapist holding on right now.  I have really bad balance.  I could only imagine if I had some wine how much worse it could be.

I will try to get better at updating.

I would like to ask to extend prayers to Ashlee Preisach as she awaits news for her transplants.  

As always, thank you for the continued thoughts and prayers.

"When I recover, I will have the courage to admit that I did indeed struggle, that there was a real problem, that I fought for my life and conquered the mountain."

Thursday, June 26, 2014

Keep on smiling...

Wow it has been a while since I have updated.

Let's start with after my last treatment with Avastin we found another blood clot in my back to the hospital we went. They upped my lovenox medicines which jon gives me 2x a day. I did tell the Dr I had a benefit planned for me on Saturday and I couldn't stay. I was discharged on friday.

Saturday was the golf outing. I am so happy I was able to be there and be a part of the fun. I feel it was a huge success and have so many wonderful people to thank. It's amazing how am community comes together to show support.

I made it through that week and made it to Florida on tuesday. What a blast. It is great to see and spend time with family. The weather wasn't our friend until the end of the week. It rained mid afternoon but would get nice in the evenings.  We went out on the boat & went fishing one night.  I can't wait to go back!

Today I had a treatment for Avastin.  I had to get my blood work tears and didn't have to hold a hand...and the results showed my white blood counts are very low. So pretty much I an more susceptible to infections. I have to get an injection to help increase the white blood count.

The dr. Said next week's scan is important because the radiation should be out of my system and we will get a better look at the tumors. Fingers and toes cross it is still working!

I just want to thank you for your thoughts and prayers.  I know I say it every time but  on days when I don't feel like getting out of bed I can feel "team beth " cheering me on.

Wednesday, May 21, 2014

All things are difficult before they are easy.

Well good news travels fast.  I had my rescan yesterday and the Drs were happy with my results.  They said that from my evaluation the strength in my legs is coming along great.  I can wiggle my toes on my right side and can pull my foot back.  My left is still behind, but it is a work in progress.  As far as my tumors go, they show signs of shrinking.  The Avastin is doing its job.  They said we will proceed with this treatment and will have about 4 more.  So another 12 weeks.  I will get rescanned again July 3. 

The blood clot injections are going ok.  Pretty soon my stomach is going to look like connect the dots.  I can't wait for my trip to FL next month and show off all these bruises.  I should just be grateful I am going to FL! 

I'm looking forward to the upcoming weather this weekend!  I have started reading again and am enjoying sitting outside on the new deck.  I'm open to suggestions on books.  I read House Rules by Jodi Picoult last week and am working on Sing You Home this week.

Thank you all for the thoughts and prayers!

Friday, May 16, 2014

DVT update

Yay! I get to come home today. I have been on iv blood thinners since Wednesday and today when I get discharged I will be on injection blood thinners.

They will show me how to give myself injections ... if you don't know I absolutely hate needles. Not looking forward to this but whatever it takes!

Thank you for your prayers and thoughts.

Thursday, May 15, 2014

Just an update

Well one thing leads to another! I have noticed my legs were swelling the point where you couldn't tell I had ankles. I had to get a Doppler test yesterday and they found I have DVT blood clots in both legs.

I've been admitted to Shady Side. I'm not in pain....maybe hunger pains...but the drs should be in today with more information. They feel I will be here another night and get to come home tomorrow. I hope!

As always I will update as we are updated! Thanks for the support and prayers!

Tuesday, May 6, 2014

Be strong, you never know who you are inspiring.

I had my 2nd dose of avastin yesterday and it was a piece of cake. The nurse didn't hurt me too bad with the Iv and blood work so I was happy about that! I only have a small bruise. I also had an appointment with a bladder Dr today. He said everything I feel seems to be from the back surgeries and not cancer.
He said I will have to deal with the sense of urgency for a while and hope the nerves calm down.

On better news I have decided to go to Florida and visit with my cousins in June. I got one month to get into semi bikini form. I'm sure PT will continue to push me and hopefully get some muscle form back in my legs. As far as arms, I think the wheel chair got me covered. It will be nice to just get away and lay by the pool :) .

Lately to help with my boring days I have been pinning recipes to try. So far I have made dinner every night for Jon and I. I know big whop I made dinner but it's a lot of work! Up and down out of the chair, not being able to carry everything...but Im getting through! This Friday I'm making dinner for the Lee side of the family... I got some good ideas :) . I'll have to let you know how things turn out!

Jon & I appreciate all of your thoughts, prayers & support.  I would especially like to thank my cousin sean for running the 1/2 marathon in honor of me. You made me feel so honored :)

Thursday, April 24, 2014

It's a good day to have a good day!

So little to do, so much time!  So far I have cleaned out my drawers and some of Jon's.  I applied my "if I haven't worn it in 6 months, it's gone." ...Sorry Jon that rule worked on your behalf as well.  I don't know what I plan to do next.  It's hard wanting to do things and being from the waist down.  Jon's starting to learn to leave things lower in the fridge for me...except for the Easter candy. 

We got a new deck built this week.  Our old deck was not very handicapped friendly and the steps did not support me getting in and out of the house.  With your thoughtful donations we were able to make this happen.  Our next project are new sidewalks so my walker and wheel chair can fit.  Right now I am half in the grass, half on the sidewalk.  It will be nice to sit out on the back deck and enjoy the sunshine soon.

I'd like to give a huge thank you to everyone involved with the pancake breakfast.  Seeing all the volunteers working is amazing.  Thank you for giving up your time and energy to help bring a smile to my face.  Growing up I couldn't wait to get out of this town and move on from it and 27 years later I am here, surrounded by people who are so caring.  I'm glad to be from a small town that shows the amount of support and love we all share.  Not only towards myself, but towards others in need.  I hope you all know how much that means to my family and I.  Thank you J.J.'s & Courtyard for making this benefit possible.  Thank you to all the volunteers that helped to sell tickets & baskets.  And thank you to everyone who didn't eat all the cookies so they could come home with me =) .

Physical Therapy has been going okay.  I currently am  having right leg, hip & back pain.  We are working hard to try to get these worked out.  It's had to believe how 1 week of being sick has set me back.  I wouldn't say we are back at the beginning but it's frustrating for me because I was getting farther than I have been then its back to being barely able to walk with my walker.  I keep telling myself "One day at a time!"

Thank you for being so patient as I update this blog.  I feel like my life is rather boring right now...I do the same thing everyday.  I may use this time and learn how to aunt has been on me for months now.  She can get my first bad batch!

Thank you for the continued prayers, love and support!

Saturday, April 12, 2014

Keeping calm and fighting on!

This past Sunday and Monday I was waking up extremely nauseated. I knew I had to get rid of it since I was flying up to NY on Tuesday. Well Tuesday morning rolls around and I begin vomiting. I made it to the airport and up the stairs of the plane. And to no relief the plane ride was a bumpy one. Once we got off the flight we went to the hotel and I started to throw up again. My poor brother in law had to deal with all of this and take care of me. I was really hoping to feel better Wednesday so we could site see a little but I started vomiting again. I had to pull it together for the apt at 130.

At the apt the Dr was extremely nice and personable . We discussed the scans and he said that my brain ventricles are in a sense shrinking and if I have headaches it is a worry because there could be a build up of pressure. He said he has seen about 5 cases of this in children. He also agreed that this is very very rare in adults and he was going to send my files to John Hopkins. He will keep in contact with my team of drs here at UPMC.

So we are going to get on the airplane and my legs have become so weak that the pilots and my brother in law had to carry me and basically drag me to my seat. Getting off the plane was a site to see. I had 2 people carrying my legs down the steps and my b-i-l carrying my upper body. But we made it!

Thursday I was still very sick and barely got out of bed. I had a headache but was able to keep toast down. That was all I had eaten since Monday night.

Friday I attempted to shower and made it there with my walker. When I went to get out I couldn't move. I left my phone in the bed. I literally crawled from the shower to bed and called Jon. He got me into bed and I started to dry heave and got another headache.  At this point we called my neurosurgeons nurse and left multiple messages and emailed the neurosurgeon himself. Of course no answer. We decided to come to the er and I received a ct scan, of my brain to make sure the ventricles were not getting clogged and they weren't!

So today I woke up with a horrid migraine. Jon was rubbing my shoulders trying to rub out my muscles. The drs had fluids through my iv and pumping me with different pills. I felt that was making my stomach feel worse. I kept napping it off and around 1230 I started to feel better and better. I'm ready to come home now!

They sent out a test for the flu, they said it should be back tomorrow and then told me I have a viral infection. Everyone has to wear masks around me.

We moved my first treatment until Monday. They said they want me to be as healthy as possible before I start this. We will see about that. Maybe that's why they keeping me here to keep fluids in me.

Hope everyone is enjoying the beautiful weather! Thank you for the love & support!

Monday, April 7, 2014

Just wanted to give an update on what is happening...

Tomorrow I will be flying to meet with a Dr from NYU.  He specializes in brain and spinal cord tumors.  I am hoping he will be able to provide a little more insight to the type of tumor I have and if he has any different thoughts than UPMC.  My appointment isn't until Wednesday.  I fly home Wednesday evening.

Thursday I am to start a new treatment called Avastin.  The UPMC drs believe that my tumors are inflamed by the radiation and because of this they are not able to tell if the radiation worked.  The Avastin is every 21 days for 14-16 weeks and its job is to take away the inflammation from the tumors.  If this works, the tumors should shrink.  I have another rescan date set for May 20.

As far as PT, everything is progressing very well.  I am walking with a cane with some assistance.  Today we walked about 800 feet!  I also have been working on steps, I can go up and down with little to no assistance.  My feet are slowly seeing some progress.  We have been working on pulling my feet up with the stimulation machine.  I get filled with hope that I will conquer the drop goal is by the end of the year..even if it is just on my right side!

Thank you for the love, support & prayers.  We greatly appreciate everything everyone has been doing for us.

"Sometimes all you can do is not think, not wonder, not imagine, not obsess.  Just breathe and have faith because miracles do happen."

Sunday, March 30, 2014

It's not happy people who are thankful; it's thankful people who are happy.

Today was our spaghetti dinner and I must say we are completely overwhelmed (in a good way) by all of the support we have received.  To see our community come together to help Jon and I is extremely heartwarming.  Without your love, support and prayers we would not be where we are today.  Our attitudes continue to stay positive from all of your kind words and prayers.  I want to give a special thank you to Elegant Tents and Events. Everything was delicious and all of your hard work is greatly appreciated.

I would like to thank our family & friends for all of your time, effort, support, hard work and commitment to making this benefit a huge success. We love you all so much.  Having you here supporting and encouraging me makes me feel stronger and more determined to beat this.  I hope each of you know how much you mean to me.  I am truly blessed to have you as my support team. The love of a family is life's greatest blessings.

This week I have appointments with my neurosurgeon and oncologist again.  We have made a decision to send my scans and records to a dr at NYU for a second opinion.  We hope they receive the records this coming week.  My oncologist had called me to report they strongly believe the tumors are inflamed from radiation and I may not need chemo.  I just want for sure answers and plans for the next step.  Tomorrow my case will be presented to the tumor board and to the pediatric board.  The neuropathologist at UPMC and St. Jude's  diagnosed me with Disseminated oligodendroglial-like leptomeningeal tumor. No idea how to say that!!!

Thank you doesn't even begin to express my emotions for all of the support we have been receiving.  Jon and I are speechless.  You have all touched our hearts.  

Take pride in how far you have come, and have faith in how far you can go.

Tuesday, March 25, 2014

A good laugh and a long sleep are the two best cures for anything.

As most of you know today was my rescan date. I was in the MRI for about an hour and half... I totally redesigned our backyard in my head. Jon has a lot of work ahead of him this spring!

While meeting with my dr. He didn't have many answers for me. My scans show that the tumors are enhanced. Basically what they feel is that the radiation is still in the tumors and may be making them inflamed.  So they are unable to tell if the radiation shrunk them or if they grew. He said we have to wait until the dust settles to see what is going on. A team of oncologist will meet this week to discuss what the next options will be. My scans and pathology report will be sent to a dr. at NYu for further examination. I will go back next week for further information.  They are still discussing chemo as an option.

It is very frustrating having to wait this long and still not have many answers.  They keep telling me how rare this is. I feel like it has been 3 months...someone needs to figure something out. I'm just ready to be back to normal!

Please keep the positive thoughts and prayers coming. Thank you again!!

"We have two options physically and emotionally: give up or fight like hell." Lance Armstrong

Sunday, March 23, 2014

Big week coming up!

It has been a while since I updated last
Not too much has changed ... we are moving forward with physical therapy. I feel I am getting stronger and seeing improvements. I go 3 times a week and try to do some exercises at home on off days.

This week I go for my rescan on my brain and back. When we get the results and discuss with my family I will be sure to update everyone. Next week I meet with my neurosurgeon to discuss what the next options are.

Hopefully all turns out for the best. Thank you for all of your prayers and support!!

Tuesday, March 11, 2014

Pain is just weakness leaving the body!

Wow! First day back to PT and I am feeling it! It feels good to be up and moving again...makes me realize how out of shape and weak I am!

Today we did leg exercises and stretches and I even got to peddle a bit on the bike. Makes me want to get back out on the trail...especially on a beautiful day like today! At PT we also focused on my shoulders. I get sharp pains through them when we do exercises so hopefully this will start to work itself out and go away. As far as the drop feet, my left is still the worst. I know I have a long road ahead to get this corrected but I'm confident we will get there!

Hopefully tomorrow I am able to move around because I feel I am going to be pretty sore!

Thank you all for your continued thoughts and prayers . These past 2 days I was able to sit outside and enjoy the weather and catch up with neighbors. Jon comes home from gym and tells me all about my shirts he sees out. Little things bring such a smile lately!

      Count your rainbows, not your  thunderstorms!

Friday, March 7, 2014

Hey little fighter, soon things will be brighter

I know I have been a horrible blogger lately!

Since I finished radiation last week I have not been feeling all that well. I caught a cold over the weekend and that had be down for a few days. Once I recovered from my cold I began waking up severely nauseated to the point of not wanting to eat or move for fear of throwing up. I met with my radiation Dr yesterday and he said this is all normal and within the next month I should start to feel more like myself. March is definitely a long waiting month! I just keep praying the rescan shows everything is gone!

I start PT on Monday. I'm looking forward to that so I can finally get into a routine and get out of the house. I love hanging out with Remi...but the conversations can only go so far.

Thank you all for the prayers and support. You will never know how much it means to us.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." -Elizabeth Kubler Ross

Tuesday, February 25, 2014

Do a little more each day than you think you possible can!

Wow! What a weekend we had. It was so wonderful to get to spend time with family and friends.  It is so nice to have everyone at one place so I can see my family!!  After all the party's were over I got to hang out with my one of my favorite crew...I just love them! I think they are used to seeing me with no hair which makes me happy because my wig gets so hot!

Great news from my doctor yesterday...Friday is my LAST treatment!!!!!!! I will have 4 larger doses of radiation on the 3 most troubled pituitary gland, my mid back and lower back. There is a tumor that is near my tailbone that he feels the radiation has affected, which is causing me all the pain. He said he is happy I am showing pains because it is a sign the radiation is working. Lucky me to not be able to sit! The side effects with the pituitary gland are short term memory loss, blurred or double vision. He referred to my mid back region as the "scary spot". Hopefully, all the tumors will be eliminated!!

Today was probably the worst radiation treatment I had. They had to reimage and draw new lines on me that took over an hour. I had to lay still with the mask on, feet bound together and not move. I started to have a small panic attack and cry! Thank goodness that was the last of that! They said tomorrow will be a normal treatment.

I will still have to wait until march 25 for the rescan before we know any results. It will be nice to get some normalcy back in the next month and not be driving to pgh everyday! 

Thank you all again for the love and support. It makes me so happy when I see pics of the tee shirts on Facebook and all the smiles. You all are truly wonderful!

Saturday, February 22, 2014

Attitude is a little thing that makes a big difference.

Well this turned into a harder week than I thought! My legs felt so tired and weak throughout the week and my tailbone pain never let up.  I pushed myself through PT to finish the exercises but as soon as she left I was laying on ice! I hope by staying off of it as much as possible this weekend that will help!!

Radiation has been going fine...the drive down is becoming annoying. Jon & I both agree we will not be venturing to Pgh in the near future.  Hopefully next week is my last full week of radiation! I'm ready to have my afternoons back!

I loved waking up this morning to the sun shining and he birds chirping... No winter last forever, no spring skips it's turn.... Until next week when the bitter temps return and snow!

Hope everyone has a great weekend & sorry for such a short update. Thank you again for all of your love and support.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." -Elizabeth Kubler Ross

Tuesday, February 18, 2014

The greatest oak was once a little nut that stood its ground!

#20 down...hopefully 10 to go!! It has been a long road... this morning my legs were just not cooperating with me which made me extremely frustrated.  After my nurse left I took a nap hoping to wake up on the right side of bed. Unfortunately, my tailbone is still bothering me! I did lay on ice tonight and have been rotating side to side to try to stay off of it.  It sure makes pinning hard to do while laying on your side!

I got a sneak peak of the tee shirts that were made by my little cousins! They looked awesome and brought a smile to my face. We also got the rubber bracelets in, my brother in law has all the info for them if you are interested.

I know I'm allowed to have a bad day here and there...hopefully tomorrow I wake up full of energy and legs that want to work & a not so sore tailbone!

Thank you for your love, prayers & support in this difficult time. I can't wait to get back to my old self...hopefully sooner than later!

Monday, February 17, 2014

Radiate Positive Vibes

Had a great Sunday with family and friends ... went to lunch with my parents & Azzara's to Gateway Grill. A m a z I n g pizza!!!! Afterwards we went to our cousins 1st bday party. It was great to catch up with everyone!

I got #19 under the belt today! We have noticed some red marks on my forehead over the weekend and my Dr seems to think its because the front of my skull is not as thick so some radiation is affecting that. He was going to try to get another measurement to correct that. Other than that everything seems to be going well. He said my last 4-5 treatments will be a heavier dose of radiation. I will just be happy when traveling to Pittsburgh everyday will stop.
My legs are exhausted today. I had a good workout with PT and used the stimulation machine...I don't know if that is why my legs feel so tired or not. 

I was also happy to see the bracelet sales that Vanessa did went very well :) I already have an idea on what I want for the shopping day :D . My brother in law also got his bracelets in today....the rubber style.

I am still overwhelmed with all of the love and support we have been receiving. You all hold a special place in both Jon & my heart!

Saturday, February 15, 2014

If you dream it, you can make it happen.

I'm terribly sorry for the lack of updates! We have had a busy week and by the time we get home in the evening I am exhausted!

To recap everything that has been happening is we are over the hump for radiation! We are hoping march 5th is the final treatment.

We met with my other oncologist that specializes in chemotherapy and I will be rescanned March 25 to see if the radiation got everything. Prayers that it has!

This snow hasn't affected our travels to and from hospitals. Growing up I played in the snow for hours at a time. It makes me sad that I cannot get on the quad or sled ride with my nieces and nephews. I know everyone will moan and grown but hopefully next winter we will be able to make up for it!

I also got my wig today.  Everyone in the family loves it... its just a weird feeling for me. I got my head shaved completely down and I am not used to that. Then I put the wig on and am not used to seeing hair. Brody told me today that he hopes my hair is in by his birthday because if I'm sick I shouldn't come to his birthday... bless his heart!

Today has just been a hard day for me. And I know its okay to have days like today.... a want of normalcy...if that even exists. I guess i would take a perfect day of sled riding with the kids, tubing on the back of the quad & making smores at the campfire.

OK ... back to positive..

  Keep calm & Fight on!

Tuesday, February 11, 2014

Life's not a sprint, it's a marathon!

Well after feeling quite crappy day yesterday I feel much better today!  I was just so drained, exhausted & nauseous all day yesterday.  When we got home from radiation I ate and went straight to bed. 

Today was much better.  We hit #15 of treatment, as long as nothing has changed only #15 more to go!  Other than the drive that seems to be getting longer and longer, my treatment times seem to be getting shorter.

Still no word on my wig, but I am loving the Mohawk hair cut for right now.  I can still tell I'm losing a lot of hair, but its easy to deal with now that it is so short.  Jon will have to buzz me up again this weekend.  

My Dr. gave some good news... only 1 poke/week for my blood work!  YAY!!  My white blood counts are still on the low side but they have not dropped any more.  Hopefully it continues to stay that way!  I'm over getting blood work!

Sorry for such a short update...

The struggle you're in today is the strength you need for tomorrow. 

Sunday, February 9, 2014

Sisters are angels that lift us to our feet when our wings forget how to fly!

What a weekend!  We were pretty busy this weekend.  Yesterday, Jon, Julie & I went wig shopping and found a wig.  It should be in within a week.  I have been losing so much hair lately that today when I woke up I made the decision Jon was going to buzz it.  I was at the point that I was waking up in the middle of the night to clean off my pillow from all of the hair.  No one should live like that! We had fun with my hair...we put a temporary Mohawk in.  Hey, I'm never going to have the opportunity to do that again...might as well take advantage of it!  Jon said now I will be so low maintenance when I need to get ready and that I now have the screw you cancer hair cut.

After wig shopping yesterday, we made our way to the mall.  It felt good to get out and shop!  Jon and I did our Valentine's Day shopping and gave our gifts a little early.  I got a new watch & Jon got new shades.  Unfortunately, the sun has yet to be out! 

Today we went to my parents house for homemade pizza with the family...and to debut the new do.  Brody's response was "Aunt Bethy you look like a boy!"  He has a good way at making me laugh.  I'll have to teach him when he is old enough to date not to tell some girl that!  My Dad could not believe I had a Mohawk!  It felt good to make them laugh.

I know everyone says, "It's just hair it will grow back" but the moment Jon started I felt refreshed.  I read a saying a while back, "Cancer never had me, I had cancer."  Its true, it may take my hair, my appetite, & my strength, and other things; however, those are things that I will have back.  In fact, today during working out I increased my weight in dumbbells and I also was able to make Jon Sunday breakfast. I am still me.

Thank you again for the continued love and support.

"The greatest glory in living lies in never falling, but in rising every time after we fall." Nelson Mandela

Friday, February 7, 2014

Fall seven times, get up eight.

Well today was a pretty okay day!  We knocked the nausea out pretty early this morning, so I was able to enjoy a cup of coffee with my cereal today.  That then turned to knocking out my headache quickly. Jon & I did some physical therapy together this morning as well.  It felt good to get back into the swing of things. 

Radiation went well.  I was talking to the girls there about how tender my scalp is feeling and they said that is normal to feel as I start to lose the hair.  Tomorrow I am going wig shopping.  Something I thought I would never be saying at 27 or be looking forward too.  It was pretty freaky today in the shower and see how much hair I am losing.  It is definitely easier to think "Oh, it is just hair it will grow back".  But actually seeing it fall out is something I don't know how to prepare for.  Maybe have Jon shave my head...then we'd be twins.  I guess I just need to handle it the same as I have been handling cancer...One day at a time.

On the plus side, Courtney & Luckey came over with the Wii tonight...I'm pretty sure the Lee's kicked butt! ;)  It was nice to get to play some games to get my mind off everything and still work on my balance.  By this time of the evening, my legs were pretty exhausted.  Plus, we managed to get an ice cream cake out of it.  And thank you Courtney for helping get some more organization to the house! 

Hopefully tomorrow we have success shopping! Thank you again for all your kind and positive thoughts and prayers.  Keep them coming! 

"Those who believe and trust they are strong will always have strength when they need it"

Thursday, February 6, 2014

The man on top of the mountain didn't fall there.

So sorry I haven't updated in a few days! Being home is great, but I have a lot to get acclimated to.  We are still trying to get settled in. I've been doing okay at home getting around...I've been trying to use my walker as much as possible and only use the walker if I'm tired.

The past few days we had a home nurse, occupational therapist & physical therapist come to the house. The OT does not need to come back. My PT will be every Monday, Wednesday & Friday. I start that next week. Until I have Jon to help men work out until then.

Radiation has been going OK. Most mornings around 3am I wake up with a migraine & am extremely nauseated all morning. I still suffer from dry mouth. Today was session 12...almost half there. I have noticed more strands of hair coming out when I brush my hair. Its scary to think about but we knew it was going to happen. Whenever it does happen I decided to have Jon just buzz it all. Maybe I'll be that 1% that doesn't lose it ;) . After all, I was the 1% to have my shunt in my back fail!

I hope all of you know how thankful I am for the abundance of cards I receive daily. It is truly an encouragement for me to keep a positive outlook during this chapter of life.

       Dear God, if today I lose hope please,  remind me Your plans are better than my dreams.

Monday, February 3, 2014

Home is where your heart is

I am FINALLY home! Jon and I have been living at presby and mercy hospital since January 9th. What a feeling to walk into a clean house, new love seat & home gym. Thank you to my sisters & brother in laws for making that happen. Now you can come back and help unpack the 20 hospital bags we have ;) .  And thank you everyone for your donations that helped with these purchases to make my life as comfortable as possible.

Today at radiation we had to do some x-rays because they were moving to a new area. We also discovered that my blood count is low. That means my immune system is very low and I can catch viruses very easily.  I have to get blood work 2x/wk to track this.

Remi was so excited to see us.  She literally had her paws on my chest kissing my face for a long time and has not really left my side.  I definitely got more kisses than Jon... just saying!

I can tell there are going to be a lot of adjustments that will need to be made for me.  I guess we will tackle that hurdle tomorrow!

I will be receiving home health care for a while then will go to a regular out patient therapy center. Until home health is set up, I have Jon to push me and make me do all my exercises. I don't know to be scared or happy! ;).

     What I love most about my home is           who I share it with.

Saturday, February 1, 2014

Always keep your head up

So much for my day off! We only had 1 hour of PT this morning and I walked the furthest since I have been here. We started on the 1st floor walking on a sloped surface and then learned how to sit on a low chair and how to get up. From there we walked to the elevators, stood the entire time waiting and the ride up, then walked to my room!

I've still am battling through some upset stomachs, hopefully they get that fixed up before we leave on Monday.

I am SO excited to bust out of here! It will feel so good to have Remi snuggling with me in my own bed.  I'm sure Jon is excited to sleep in an actual bed then a cot as well!   

Jon & I are so grateful for all of your continued thoughts & prayers. We can feel the love & support that is being sent our way.

I thought I'd end with a quote that made me laugh tonight,

      Without brains, boobs are useless.

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