Brain tumor walk kick off event

Hello all,

On Thursday evening I went to the NBTS (National Brain Tumor Society) kick off event for the dallas walk on November 9th.  I was invited by Not only Marla Payne (the director of event for NBTS), but also by a board member Deana Woods.  So when I arrived I was chatting with a guy named Kevin. He listened to my longwinded story (he is VERY patient).  Marla then mentioned my blog and his eyes lit up and he said, "That is a great blog.  I find that brain tumor patients are the most creative wordsmiths."

Needless to say I was flattered that people up in Boston had read my blog.  So then the presentations started and Kevin got up to speak.  My jaw hit the floor.  I had No idea that I was rambling on to the Chief Development Officer of the ENTIRE NBTS network.  I was floored.

So that was my brush with greatness.

Anyway I am a team Captain my team is called team tumoriffic and I am already out of flyers and brochures.  But fear not bc Marla enabled me with more I got a whole box of them and am now going to plaster them at every starbucks in Dallas. 

I really messed up though bc I wrote on all of the ones that I gave out WWW.tumoriffic.blogspot.com

Yeah that IS NOT my blog but it is close.  WWW.tumorrific.blogspot.com

But you already know that, you're reading this.  

I contacted Connie Yates of Tom Thumb and asked her if they could fundraise for the walk.  Brain cancer is so neglected.  I have always been jealous of breast cancer they get an entire month of awareness and brain cancer gets 1 measly day.

Anywho I will be updating this blog to keep everyone updated on the progress.

I set an incredibly loft goal for the team of $2000, when Mike heard that he said it was really hard to get $1000 in 2010.  I replied you were doing it alone now you've got me.  The Chatterbox that survived brain cancer.

Raise awareness Jewelry

My friend Alysha Coddington is incredibly talented, she makes jewelry.
I am a stay at home mother with a degree in pre medicine. When the kids are asleep I love to make jewelry. I like to make lightweight, simple, modern and unique pieces. Among my friends and family, I have found that it is very difficult to find anything nice, pretty, unique, or interesting to show your support or awareness of lesser known illnesses. I have stocked up on silver support ribbons and use my wire work and the colors of my glass beads, natural gemstones, and crystals to create the support jewelry we have been looking so hard for. Currently I am working on support jewelry for Brain Cancer, Epilepsy, Rhett's Syndrome, and Hospice. I welcome requests, either for custom design or specific color awareness items. I am also offering to donate a $1 per order to the organization of your choice (such as the NBTS). Perhaps we can make a difference.

https://www.etsy.com/shop/JewelryByLunaRaven?section_id=14200914


You know I don't advertise on here but this is a worthy cause.

Brain tumor Walk

Hi Guys!!!
I am the Captain of Team Tumoriffic for the National Brain Tumor Society Walk, which will be on Nov 9.  First of all you don't have to walk if you don't want to walk.  I am asking for your support so we can put an end to this HORRIFIC disease.

When you click on the link go to donate tab, Donate to a participant, then you can click donate to a team. Even $1 will help.

I am walking in memory of:

 Alice Tate Garner

And in honor of 

Ches Garner

and

All my tumoriffic friends!!!

Love you all

Andrea

http://www.braintumorcommunity.org/site/TR/Events/BTW-TX?team_id=66518&pg=team&fr_id=2095

Anniversaries

Anniversaries

They say you never forget the day someone told you those 3 words no one ever wants to hear.  I am here to tell you they are right.  I've been told it is perfectly normal to experience symptoms as your anniversary approaches, as well as around the time of your next MRI.  It is stressful. People will tell you it's nothing, but that doesn't ease the anxiety.  Because with any kind of cancer if you get an unexplained pain it triggers something in the back of your mind that thinks maybe this is it.  Its back.  I can't help it and I think it is normal.

Today I woke up feeling fine. I started feeling nauseous, but chocked it up to hunger.  Then I went to the store to get stuff for dinner.  People must have thought I was drunk because I couldn't walk it a straight line.  I was walking diagonally.  I got back in the car.  That is when I realized that I had a pain right behind my left eye.  It felt (for lack of a better description) like someone or something was trying to push my eye out of its socket.  I came home took some Imitrex laid down next to Mike.  He had to open the packet for me. Now I am sitting on the couch typing and my right shoulder and arm are simply EXHAUSTED.

I think this is all because my cancerversary (cancer anniversary) is in 1 month and 7 days.  But if the symptoms persist for a few days I will check with Fink.

No one has all the answers.  You have to find what works for you.

Hopefully my homicidal child (Snarla) is still asleep.  

6 years too late

Back in 2007 I was in college and as most college kids are I was flat broke.  So when I found a two story apt with a balcony for dirt cheap I immediately signed the lease.  Red flags

1. it was scheduled to be demolished.

2 there were cars on blocks

3(prolly the most important) it was in the ghetto.

So I walked in one day threw my keys on the table and they hit the floor. I looked up and it took a second, but then it dawned on me.  ALL my stuff was gone. My couch, my dining room tables and chairs, my clothes, my computer, all my paintings.  They were replaceable but they got 2 things that I cannot replace.  My deceased mothers diamond necklace, and a mirror that my Grandbetty gave me.

Needless to say I was livid, irate, furious, seeing red.  I totally lost it and kicked a hole in the wall. Yes little ol' me now property destroyer. Mike (my boyfriend at the time) was with me and he was levelheaded.  He told me not to touch anything and go sit outside while he called the cops. Well in instances of robbery the cops are basically useless.  So I lost all my stuff and had to start over.  I still get a twinge of anger when I think about the robbery.  I mean that is when I was asking why me.  I try to self soothe by telling myself it allowed me to get a fresh new start.  But that is a bunch of bull, I had moved there for a fresh start.

Today I woke up and it dawned on me.  The apt managers didn't bother to change the locks.  Probably because it was scheduled for demolision.  I blamed the management then sued and got nothing.

Word of warning for all you broke college kids out there and parents of kids in college. Whenever you move into any place before you sign the lease make SURE they changed the locks.  I don't want anyone else to go through what I went through.

 THANK GOD I wasn't there.

Everything happens for a reason!!

Now I KNOW my cancer was/is a blessing.  I have always wanted to help people in any way I can.  I have a lot and I mean a LOT of life experience.  However Snarla the Cancer seems to be the most helpful, ironically.

Now, I have volunteered with hospice before and subsequently was hired at D.A,D.S.(Department of Aging and Disability Services state of Texas). Then I was diagnosed cancer and now am going back to volunteer with MUCH more experience.

So THANK YOU GOD, Because not only did you give me the strength to survive Snarla, but you let her be a necessity of my life experience.  Father I feel called to do work with hospice.  Please let me not let you down.

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.

Only good reviews... BEWARE

Ever wonder how and why those "great" companies get 0 negative reviews? Well here is the answer from experience.
     We took our dogs to All Dogs Unleashed to be trained while we went on the cruise.  However when we got back our dogs were trained alright, so trained they were petrified of the collars and therefore us.  We didn't like the fact that they said to repeatedly "stimulate them"  when they don't listen.  That means SHOCK them repeatedly and thus the reason why they were afraid of the collars.
So as a consumer I thought people should be warned about this place, so I gave them a blisteringly honest review.  I said they are sadistic and cruel and they are LIARS.  They sugarcoated the whole shock thing I actually asked, "Is this a shock collar?"  They replied, "No, it is a muscle stimulator do you want to feel what it does?"  So I put it around my neck and they "stimulated" on level 5.
     When we got back they had jacked it up to level 20 and when they shocked Sasha and Indy the dogs jumped and Sasha yelped.  I was PISSED.  The vibration works just as well.  In addition they put the collars on so tight it chokes our dogs.  The collars are EXTREMELY uncomfortable because they have 2 prongs that go around them and bore into their neck.  I tried to get Sashas more comfortable and tried to twist it to a more comfortable place on her neck.  She Yelped and jerked away.
   After I posted the review I got a call from the OWNER Scott  www.alldogsunleashed.com
and guilted me into taking it down I felt threatened so I took it down.  I thought all reviews were anonymous. So I was just trying to warn others.  So take care where you send you puppies.
http://alldogsunleashed.com/

Back into the jobforce

So I have been thinking about going back to work.  I want part-time and would rather the employers not know I have cancer.  However If anyone that I apply to is the least bit internet savvy they are going to find out and there is nothing I can do about that.
     If they don't want to hire me due to the fact that I have survived brain cancer then it is their loss.  Cancer has taught me how to and NOT to interact with people. Especially elders and it taught me how to be even more compassionate.  I wouldn't change a thing. I've had people tell me me different things about telling the employers that I had cancer.  My sister said disclose it and though it may cost me that particular job, I will know when I do get a job they will be flexible due to my "condition".  Pam said don't disclose it because they are going to want to know that I will stay with them and not waste their time and money.  In other words I will be a "good investment".
What do you think?  Would you disclose that you SURVIVED brain cancer and are tenacious enough and tough enough to withstand almost anything life throws at you?  Also I HAD to turn down a promotion from D.A.D.S. and that just makes me sick.  Now I am looking for something in community and social services all the way down to clerical and filing.
Your thoughts? 

Dancing tumors

My readers  know 2 things as an absolute truth about me.  1 I have cancer  2 I LOVE dancing.  That is why I miss Danceaton so much. 

     I went out last night with friends and to my delight we went to The Den, a dance club and lounge.  It was empty when we arrived so not caring what ANYONE thought, I let loose with my pent up dancing frustration.  The bartenders were laughing their butts off at me, but I didn't care.  I was having fun and they were getting free entertainment.  Anyone that has ever been to a club knows that the people come in and the dance floor is a ghost town until the drunks get there.  Well not last night.  One of my many theories is if I have fun that is great, but if I can have fun AND  provide entertainment for people; even better.  I am NEVER going to see any of them ever again and the ones that I will see again are my friends.  Any my point is Other peoples opinion of you doesn't change who you are or the situation that you are in.  If they want to judge, let them.  Be proud that they were paying attention.  Maybe they'll learn something.  There is no point in being embarrassed it is a useless emotion what is done is done. This little 20 something girl came up to me and challenged me to a dance off.  Of course I obliged.  Basically I dance at her.  She got embarrassed and took off.  It was entertaining to me.  Then these 2 guys came up and tried to dance with me.  I didn't want to be hindered so I danced away. 

   Anyway when we left I was DRENCHED in sweat and felt great.  DAMN I wish 24 would bring a cool dance class back.  I only go to swim now bc Turbo Kick and Body Pump are on such a regiment that the instructors have to play certain songs with certain sets and they don't have the rights to play the real songs such as Guns N Roses Sweet child of mine, This guy was howling and it didn't sound ANYTHING like Axl.  I don't blame the teachers at all.

     Every day people live their lives and some of them have such low self esteem.  Up until Snarla parked herself in my brain and challenged me for the right to live I had VERY LOW self esteem.  When I won the fight I the phrase, "you can only control how you act and react" suddenly made a whole heck of alot of sense.  When you get angry think of why you are getting angry, it is usually because you can't control the situation.  It is the same for most negative emotions.  I find the most powerful word is WHATEVER.  Whatever they want to do is what they are gonna do and how is feeling bad going to benefit  you?  Just let go and let God,  basically just float.  If the situation is bad you can just leave.  I learned that from an ex I had nowhere to go so I asked for help and got it.  That is what led me to Texas.  I credit him with forcing me to stand up for myself.

      We only have one life.  So get out there and LIVE like you're dying because no day is gauranteed.

Until next time...

Problems and seizures

So last night I randomly started slurring and losing my balance and I knew it was bad bc Mike freaked out and he NEVER freaks out.  So he called Fink and she thinks it may have been a minor seizure.  Therefore just to be safe I won't drive for the next couple days.
   I really need to go get my car detailed cause my dog Sasha vomited in it after we she ate a ball.  We took her the animal E.R. they did xrays and then induced vomiting.  They though she was done and let us take her.  Low and behold she held out on one last spew to do it in MY CAR.  So Mike told me to get it detailed yesterday and I was like, "Oh, I'll do it on Tuesday when I have to be out of the house and the dogs are at the Boarding Bungalow."  I was also planning on going to see my nephew Truitt on his birthday Tuesday.  Today I was going to get him a gift Power Ranger black box gear or something like that.

 DAMN STUPID SEIZURES.  Interrupting my life. But the person I feel the most for is my husband bc he is going to have to pick up the slack.  In addition to going to work he will have to go out of his way to take the pups on Tuesday unless I can finagle the boarding place to pick them up and drop them off.  Also the grocery shopping , dry cleaning and all the other stuff that I usually take off his plate.

Driving takes away your freedom.  You never realize how much you value your car until you aren't allowed to drive.  I cannot go to the gym.  I don't want to bother anyone bc my friends have given me enough rides.  They will hopefully move my MRI up and I hope it was just a fluke seizure because if it wasn't that means I am going to have to start fighting again.  Fighting makes me SOOOO tired.  Mike and I have decided No more surgery ever I don't want to do radiation I just want chemo if that what it takes.  But here I am putting the cart miles in front of the horse and the horse is having a hell of a time catching up.  Most likely it is nothing but better be safe than dead.