Thursday, December 18, 2014

Home is where the heart is


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

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

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

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

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

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

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

Friday, November 14, 2014

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


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

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

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

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

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

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

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

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

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

Tuesday, November 4, 2014

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


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

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

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

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

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

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


  

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.  http://www.mtndaughter.com/2012/11/beating-a-brain-tumor/

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.