My Talk at Together in Hope Conference

https://www.youtube.com/watch?v=B8_7JdrjnJw&feature=youtube_gdata_player My Talk at Md Anderson Together in hope conference.

Weird, but funny

So today I was walking my dogs and I saw the weirdest/scariest thing.  A corgi being walked while his owner held the leash out his SUVS window. I hope you can see it.  Then the corgi started running and the man sped up.  I was terrified I was going to wind up seeing an owner run over his own dog.  WOW.

Then a couple days ago I was at the dog park and I saw a cat on a leash just chillaxin on the owners neck.  Seriously does she realize what danger she is putting her neck in.

So weird things have beeen happening to me.  At dinner I went to the restroom and in the middle of washing my hands I started to dry them.  Before that I took my toothbrush out of my mouth while it was still running.  I have a sonicare auto toothbrush. Then I was wearing my sunglasses and walked into the house, opened my glasses case, took m,y regular glasses and put my sunglasses back on and my regular glasses back in the case.. ROFL.  I hope Lil Miss Snarla is behaving herself and staying dormant.

In other news I went to orientation for Heart to Heart hospice on Saturday.  I used to volunteer there before I graduated college.  It is because of them that I got hired as a case worker for D.A.D.S.  (Dept. of Aging and Disabilty Services state of Texas)  This time I am taking my dog Indy with me as a therapy dog.

Thats all for now.  Tata.  Remember try to make this THE BEST DAY EVER.  Cause tomorrow is never promised.

Together in Hope

Together In hope

Mike and I went to the together in hope brain tumor conference this weekend.  I met people that inspired me to start this blog again.  I gave a speech to other people with different types of brain tumors.  Did you know there are 120 diff types of brain tumors??

When I was done, I looked at my notes and realized I forgot over 3/4 of it.  I hit all the important parts though.  However, I feel the need to say some of the things I forgot on here. 

Paul Fielding (a 6 time cancer survivor and my personal mentor) gave me the best advice on handling a tumor.  He said, Make friends with the tumor.  Give it a name, keep it close. You are going to be fighting for your life against it so it may as well have a name.  As most of you know I named mine Snarla bc she snarled across the top of my brain.

In addition to volunteering and painting, I took solace in music.  Mike just looked at me like I was nuts when we would get in the car to go to some treatment and I would blare the radio and car dance. 

After I figured out NOT to put my fingers in the skillet, (yes I really did that) I started to cook and found it soothed me.  

We met some A M A Z I N G people. Allison Allison (yes that is her real name).  Her story is why I write this blog.  She is so strong, she has a husband and a children that LOVE her to pieces.  Roslyn Franken, the motivational speaker and author. On the morning of my talk I was sitting by myself eating breakfast and she asked if she could join me.  Just her being there calmed me down and allowed me to gather my thoughts. 

Things that inspired me to fight

Still all good!!!

So on June 24 I had my big profusion MRI for the year.  Profusion MRI is where they put an IV in so they can see what the contrast looks like as it goes in.  It would tell me if Snarla was even TRYING to wake up.
 I went to Dr. Fink later that day. She came in, asked me to spell world backwards, pressed on my legs to test my strength, and a couple other things.  By no means the full exam.  Then she said Your MRI looks fantastic.  My Husband let out a huge sigh of relief at which Dr. Finks eyes went wide and she said, "I'm SO sorry I didn't lead with that."  She's a funny lady.
I'm telling you one of these days the appt is going to consist of Dr. Fink poking her head in the door and saying, "You're all good.  you can go."

Everyone is congratulating me on the clean MRI.  I have begun to think it is no big deal because if something is wrong I will feel it developing.  But it is nice to know they care. I know I shouldn't take my health for granted, but I am taking care of myself and doing the best I can and what happens happens.  I have let go and let God.  He is the reason I am here today. I DON'T take that for granted.

Gaby and Candace at DANCEATON tell me I should turn this blog into a book.  I don't want to because there are so many other books about this subject out there that are so much more helpful.  Besides I don't want to go through the hassle of paying to publish this.

My birthday is on Saturday I can't believe I made it to 32.  When I was young I always thought I would die young and leave a good looking corpse.  Had Snarla not been discovered I would've accomplished that feat,  but alas as it turns out I didn't want to die.
Live Long and prosper people.
Till next time
Thats all I got
(hows that for a sign off?) ;)

Wow

I am so incredibly thrilled, honored, and humbled in this moment.  Why? You ask.  Well, I'll tell you.
On the way to lunch today I received a phone call from
Brittany Cordeiro

Publications Coordinator

Department of Neurosurgery 

MD Anderson Cancer Center

She asked me if I would be willing to be on the "Patient Panel" for the Together in Hope Conference Aug9-11.  She then went on to explain that it would be me and 3 other patients (survivors) give a 10 minute talk about their experience in their own words.  Then the floor will be open for questions.  There will be around 125 people there consisting of Patients, Caregivers, Doctors, Nurses and people that are generally interested in knowing more about the new treatments for brain cancer.  Then the Astros are playing the Rangers (baseball) and the game is going to be dedicated to brain cancer awareness.

     I asked her why me.  She said that my story is one of inspiration.  Again I don't think I am and inspiration.  I just did what ANYONE would do when faced with a potentially fatal disease.  I researched doctors, got 2nd and 3rd opinions, Threw out the possibility of the wait and see approach. I was terrified, absolutely gut wrenchingly TERRIFIED. The only reason that I got through it was God and Mike and the overwhelming support of my family, friends, and strangers. For all of whom I am deeply grateful.  

     My friend Paul said it would be an opportunity to get a job.  UMMMM love ya Paul but no.  This is not about me, I am there to help people in this situation figure out how to get through it with their sanity intact. Let them know They CAN DO IT.  (I love that line.) YOU CAN DO IT, YOU CAN DO IT, AND EVEN WHEN YOU THINK YOU CAN'T, REMEMBER THAT YOU ARE STRONG AND YOU CAN.  That is a direct quote from and email I once received.  

  So to all of the people with cancer out there I want you to remember that line.  It became my mantra when I felt like giving up.  Remember it is better to be on this side of the dirt.

Keep calm

Hello again faithful readers.  I suspect some of you have given up on me because I only post sporadically.
     Well there is not much to say except through the grace of God I am still in remission.  My next MRI is a big one.  The dreaded all day profusion MRI.  Mike and I are gonna make a day of it (its not like we have any other choice.)  I have faith it will be absolutely fine.  And if not, I will kick Snarla's dumbass out of my head a second time.
   Cancer survivors always have a twinge of fear when it comes to their specific cancer.  Mine for instance when I get a migraine I pray to God that she hasn't come back.  This is normal.  I used to want an MRI everytime I had a bad headache, after all that is how this whole debacle got started.
    A couple weeks ago I had an incredibly stressful weekend.  it was my husbands birthday and we were coupling it with another one of our friends from book club. (For those of you that are like BOOK CLUB??? I have met many new friends there)  Anyway I sent out the evite and said RSVP ASAP.  Then I called the restaurant and made the reservation for 20.  Upon walking in, there were 40-50 people there.  I balked.  I had to go ask the owner to give us more tables.  Then after a while of giving us over half the room he said, "the firemarshall will get mad with us if we put anymore people in here."  So some of our guests had to sit in a separate room.  Then there proceeded to be a screaming match about politics (lesson: stay away from politics and religion at all costs especially if one party is drunk off their you know what).
   The next day I went out with my friends.  Suffice it to say it was SOOOO not good. An infuriating situation ensued and then we went home.
Then Sunday, the most horrible migraine I have had since BEFORE the surgery hit.  I had to go lay down in the bedroom with a cold damp cloth over my eyes.  It felt like the right side of my head was literally going to explode.  Then my hand went numb and the numbness seeped up to my shoulder until I couldn't feel my arm.  When I told  Mike (who was laying next to me holding me) he said, "Move your right arm just a little. Try." Eventually I was able to shift my arm a little bit and he said, "See your arm is still there."  Then the nausea came.  I was like thank you God cause I am about to pass out.  I was convinced I was having a stroke.  Then I passed out and the Imitrex kicked in. I woke up 3 hours later and felt fine.
    My point is Don't let yourself get to stressed or you will freak out. Just tell yourself it is going to be fine, because 9 out of 10 time it will be.
Thats all I got.
Oh yeah  I almost forgot. I got this email today.  As you all know I have never done this before, but this seems cool.  I won't promote other sites bc this is supposed to be a helpful blog for survivors not an advertising site.  Do what you want with this site no pressure from here.
Make this the best Day EVER!!!!
  We have a site that caters to survivors. It allows them to store digital memories and then release them to their kids in the future. We are still in the “testing” phase and wanted to see if your readers would like to participate and get a complimentary membership.

They can visit www.kairoslife.com to register their email address.

>From there we will update them when we are ready to start testing the site. Please let me know if you have any questions.