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

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

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

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

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

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

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

  

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

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

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

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

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

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

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

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

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

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

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!"

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

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.

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."

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 lungs...so 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 completed..no 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.