abolishing beam #21 TODAY = 9 more!!

Received dose #20 yesterday (Monday).......for the first time - I freaked out with the mask on.  Why now?!?!?  Why after 19 times of wearing the mask and then all of a sudden....... after my head was locked down and the techs left the room to do x-rays - I felt an overwhelming sense of nausea..... like OMGosh - nausea!!  I waved my hands (I am monitored by 4 different cameras) - the techs rushed in and took the mask off.  Well - after one more attempt (mask on, x-rays taken to assure the tumor is lined up with the beams and table moved into position) - ready to go...... a wave of nausea hit me again.....

I was scheduled to see the radiation oncologist anyways so they wanted me to see him before attempting the treatment again to see what could be causing the nausea. Come to find out - not only is my nausea associated with the nasty anti-seizure medicine, but we believe the nausea feeling was triggered by anxiety....which made matters worse.

For the last few treatments - I have not been taking the "relax" medication.....I do not want to be on medication.  I wanted to overcome the mask and show it who was boss.  Well my attempt of that FAILED.  I take that back..... I have come too far to let this allow me to feel defeated.

I was given something to help me relax and then #20 was administered successfully - YEAH!!!
I guess I forgot to wear my big girl panties yesterday!!!

Only 9 more times of wearing the suffocating mask and I will be DONE!!  

::suckeggdawg::

My hair continues to fall out on a daily basis.  A wad here - a clump there.  So for now - I am going to just buy a hat in every color and keep what little hair I have left - in a ponytail. I can still braid it, but the braid is getting thinner and thinner.  Thank God I had so much thick hair to begin with.

Picture taken this morning..... 

I was told I would only lose hair at the site of treatment which would be about the size of a quarter...... NOT! 

If I could wear my Rays hat every day - I would.  I wore a FSU hat on Monday (although it is lime green and white) ....... ignited a few comments (good and bad).

Today - I will wear my pink #24 (Jeff Gordon) hat and see what kind of comments that ignites.

EDIT:  Can't find my #24 hat..... 
today is RAYS attire all the way!  Let see what anyone has to say about our Rays!!!  

I see my neurologist on Thursday with hopes that he will start tapering me off of the anti-seizure medicine.....

Until then.... I will smile and take one day at a time....and try again tomorrow (today)
and the next, the next, the next.....

SED y'all......

19 down = 11 to go!! yahoo....

"jack" received dose # one niner today!  

only 11 more to go!  

somebody say SUCKEGGDAWGGG

so while i am blogging this journey - that includes taking pictures ya know.  i took some pictures of the back of my head last friday because i could not believe how well my hair was growing back in...... even though it is not my choice of color (they say it comes in gray no matter the age so don't be judging!!) .... i was thankful for the growth knowing that one day it would meet my hairstylist.....

WELL..........

saturday morning - 
90% of the hair that i was thankful for the day before - 
fell out by the handfuls.... 

it did not take me by surprise since i was prepared that 
radiation causes your hair to fall out (to some degree).  

friday on the left ~ saturday on the right
there is even more baldness today (thursday)

i have to admit though - it did set me back emotionally....

yes, i cried for the few moments that i sat 
by myself with clumps of hair in my lap.  
i could only think....now i seriously look like the "backside" of a baboon!!  

my hair has continued to fall out the last few days.  

even my long hair (front, sides and back) and is thinning....  

i can still pull it back in a ponytail and you would never know of this 
bald spot I speak of..... but how boring is that.  

now momma really does need a weave.  

y'all just wait and see what i come up with..... 

seriously - someone call kenny and tell him that i have changed the title 
to one of his songs from 

"no shoes, no shirt, no problems" 
to
"no shoes, no hair, no problems" !! 

while waiting in the large room to be called back for treatment - 
you get to know one another after a while.  
i met a dear lady, Linda, 
battling a very rare form of cancer. today was her last day of radiation.  
she walked out with a huge smile on her face and a tear in her eye. 
i just wanted to cry for her.  
her husband, daughter and son-in-law were there with her to support her.  
we exchanged contact info and i hope to keep in touch with her.  
she lives two hours away - we talked about meeting half way 
somewhere for lunch one day. 


i gave her family a big hug before they left and i pray that 
they will stay positive and be full of strength. 
she has to beat this - i just know she will!!!  

i need a road trip.....looking forward to april so i can be mobile again. 


i do have a confession..... i did drive two times the other day (to radiation treatment and then to the store) and wouldn't you know that i got busted both times...... no - not by law enforcement but even worse..... my neighbors the first time and then by randy and bill the second time (all three of us were at the same intersection at the same time - seriously - i did not see them, but they saw me) ..... i promise not to do it again, but i had no choice.  oh but boy did it feel good to be free. 


it is so frustrating being fully capable to drive and just because of a doctor's restriction due to ONE seizure.....i can't drive for six months.  come on april!!  

just amazed at how many of you care enough to still check on me, 

message me, text me, call me.... to see how i am doing.

How are YOU doing?? 

SED y'all!!!  doing good and carrying on.....   :o)

Beam # 15 today = half way with treatment = "S.E.D."

suckeggdawg.....today is abolishing beam number One Five = the half way point of radiation treatment for "Jack" who does not stand a chance against what is being done to "it".  


The top of my head has a definite sun-burned feeling (I wish I could say it was from being at the beach...). My hair is still falling out, but its all good. What has grown back in the last 13 weeks - sticks straight up.  Thinking I should just go for a mohawk at this point.....just in time for Rays season.  

I am in desperate need of a cut, color, highlights and some extensions......

never thought I would be so high maintenance..... 

I have really bad fatigue at the end of the day - like bone hurting fatigue.  I still think it is from the anti-seizure medicine.  The radiation oncologist wants me to see the neurologist sooner to see about starting to taper the dose ASAP.  

Still dealing with the emotional/physical aspects of all of this but......

I have to remind myself - Today is a NEW day......relying on my faith. 

My thoughts and prayers are with 

Poppa Jack, Steve, Ann, Sandi and 
EVERYONE included in the family. 

Rest in Peace Patty Fortner! 
There are so many who will miss you.....

Dedicated to Patty Fortner...... 

11 down = 19 to go!

abolishing beam #11 was administered today.  4 more and I will be half way done with treatment.  


a very special friend, Dee, took me to my treatment today. she is always offering to help me so i "let" her today - as she calls it.  as i've said before - i am not one to ask for help even in a time of need.  i am so thankful for Dee as she was there for me at another very important time in my life 21 years ago! we lost touch over the years....i wish there was a way to go back and recover the lost years. she is always such a joy to be around and i have so missed spending time with her. 

circa 1990

my dizziness is gone - thank God. i did not take the steroid that was prescribed..... do you ever read the little note from the pharmacy that is attached to the bottle?? - well you should....... after reading this one - the first possible side effect mentioned was "feeling of whirling motion"....ummmm. no thanks.  why would i want to make it worse?? 


had the weekly meeting with the radiation oncologist and nurse. things are going according to plan.  he was very nice and answered all of my questions (i am full of them!). 

let me ask all of you something......... 

who here can say that you have already met your 

annual insurance deductible for 2012?  

raise your hand......my hand is up.  

it is January 13th and I have already met my $10,000 deductible..... and that was easy.  One radiation abolishing beam costs $1,142.96 (yes, that is per treatment and that already includes the discount from the insurance company...Moffitt charges $2,198 per treatment to the insurance company!!)!!  crazy, huh!?!?  should be illegal.  who comes up with these charges??


one of these days - i am going to add up every single test, MRI, CT scan, hospital stay, surgery, anesthesia, doc visit, follow up, medications, etc to see what "jack" has inflicted financially. i would without a doubt say that this entire "jack" episode will be over $300,000 (+).  thankfully, insurance covers 100% after the deductible is met.  


all i know is how thankful i am for great insurance.    


thankful for a lot of things...... not always the best at showing it.  


enjoy your weekend.  i am going to try to figure out what to do with my hair this weekend  - momma needs a weave or something.  a friend sent me some pics of short-hair cuts, but my face is too fat for short hair so i need to be creative.  although - i could just walk around with a baboon bedhead and not care about it.  oh well..... 

Love me some Wynonna.  
This song just touches my core.....
she said her momma told her
"honey, let them see the brokenness, 
let them see the cracks in your armour - 
that is how the light gets out"
how true.....  

suckeggdawg y'all.

9 abolishing beams down = 21 to go

I am just now starting to slightly feel the effects of the radiation......scalp feels burned (only in the spot where the tumor is (WAS!!!) since that is the area being targeted), fatigue, and my hair is starting to fall out a little.....  we pass this wig shop on the way to Moffit every morning..... Wigs, Wigs, & More Wigs.... think I may stop in and see if they carry anything my style.  Any recommendations?


I still see half-KidRock half-baboon when I look in the mirror....but now - I look like something out of A Flock of Seagulls (from the 80s).


A co-worker asked me if  the radiation has started to shrink the tumor already.  This is something that we will not know until 3 to 6 months after radiation treatment is finished.  They will do a MRI to see what the difference is by comparing the images to all of my prior MRIs.  I will be believing that "Jack" will be a "LGH" =  (Long Gone Honky as my mom used to say) and something for me to never worry about again.


I woke up extremely dizzy this morning - like room-spinning dizzy.  Doc put me on a steroid pak to see if this helps.....he said that the radiation would not cause this feeling.  I think the dizziness is from the anti-seizure medication which is just ONE more reason for me to go off of it.  I am not going to have another seizure.  I see my neurologist in the morning before treatment #10 so I will hopefully know more then.


The radiation techs play a CD for me during my treatments.  The song below is always one of the songs playing and it has always been one of my favorites.  I sail off to the beach during my treatments to get my mind off of the suffocating mask.

I love the part of the song...."soon i will be free"....

               

God's evening canvas..... the canvas CAN do miracles!
Clearwater Beach - summer 2011
Come on summer 2012!!

Just wanted to touch base.  
Thanks for the texts, messages and most of all - the prayers.
suckeggdawg y'all.

12 weeks past and # 7abolishing beam today

This past Saturday was the 12 week (3 months!!) point since my seizure.  No seizure activity since - can I get a  big hallelujah!!  It seems it has been ages since all of this happened.

I have not done a good job of taking one day at a time...... they all seem to catch up to me at one time and then I just break down.  Battling with the depression/emotional side effects from the medication and it is unbearable.  I hate that part of it.....it almost makes you feel defeated, jaded, damaged, burdened, unloved/unlovable....well it does make you feel that way, but I have to push through it.

PUSH = Pray Until Something Happens.....

Today will be treatment # 7 of the abolishing beam. 23 to go!   It is getting a little easier wearing the mask.  Randy (my brother) got to see it on Friday when he took me to Moffitt.  They showed him how everything works.  It is absolutely amazing.

I had some headaches and dizziness over the weekend, but not today - thank God.  I woke up headache free this morning.  I was told that the radiation can cause your brain to swell and that could be what is causing the headaches - especially since I am starting week 2 (that is when the side effects start).

We had the honey cart this weekend at the Wiregrass Farmers Market.  I met a lady who stopped by to purchase bee pollen.  She had brain surgery back in May 2011 for an aneurysm.  We basically had the same surgery (craniotomy). She has been taking bee pollen (instead of the medication.....because of all of the side effects she was experiencing from the medication) and has an incredible testimony. This lady looked fantastic!!!!  I wished I would have had more time to talk to her.  The bee pollen has helped her hair grow back and she feels wonderful.  We tell hundreds of people about the benefits of bee pollen when we are at the market.....why didn't I think of taking it before now?!?!?..... dummy me.  I am starting it today...... if you want more info - let me know.  I can hook you up with honey and bee pollen - it is local and RAW!!!  yummy-yummy.

Washed another load of laundry yesterday..... with nothing in the washer.  

I wondered why the washer was so quiet...... oh well.  

I tried to be productive......

I named the tumor Jack and this is a song just for him...... 

(I take no ownership over this tumor because it will be gone soon!!!)

suckeggdawg.......

3 treatments down = 26 to go

Today is #4.


Radiation is going good.... I am tolerating the mask for the most part (better than I thought).


I did not have to have treatment on Monday since the radiation dept. was closed for New Years.  That gave me a day off.  My treatment on Tuesday lasted a bit longer than expected....... the techs could not get my mask lined up.  Josh took me to my appt. so he was able to go in and see the machine and the mask.  He had to leave the room before they started the x-rays/abolishing radiation beams.  


They put the mask on my face (have I mentioned that it is locked to the table.....) and then they do an x-ray to make sure that my head is aligned for the laser beams to abolish the tumor.  It has to be within 1mm....... well - they tried about 5 different times yesterday and could not get my head to line up.


The radiation oncologist was called and would you know that once he walked in.....the mask lined up..... isn't that always the case.


I would say that I was in the mask for a good 45 minutes..... and it should have only been 15 to 20 minutes. I did rather well considering.


Other than being tired from the radiation - I will start to feel the effects of it within two weeks......if I feel any at all......hoping I don't.  My hair that was shaved off for the craniotomy is now over an inch long (or more) and I risk losing that.  I have read that your hair just starts falling out in clumps. Oh well.....there are worse things.  Hair will grow back eventually.  I am in dire need of some color and highlights.  I have to wait though.  I miss my hairdresser.

Flowers to brighten OUR day: 

makes any girl just SMILE  :o) 

suckeggdawggggg......

Right about now - 
this is what the tumor is 
singing to ME.... 

Hope everyone is doing well.  
I am trucking along with 

this abolishing act.
No worries my friends and family.

Love to all,

11 weeks since surgery

Today is the 11-week mark since my unexpected craniotomy to remove an unexpected brain tumor - a big thing called a "meningioma"....after having an unexpected seizure.  Funny - I keep saying unexpected.....who ever "expects" bad things to happen?!?!?  If we did - wouldn't we act different, live different, be different?!?!? Think about it.  It is moments like this that make you take a few steps back and reanalyze things......there are big things in life and little things in life.  what matters most?  learning to make the most of each day.......day by day

I have learned that this type of brain tumor is one that worries neurologists/neurosurgeons the most.....they are so unpredictable.  Yes, mine is benign - thank the Lord and I am so thankful.....but it still comes with the emotional baggage of a malignancy.  In due time - this too shall pass and I so can't wait for that day.

I started radiation last week.  Today will be treatment #3.  That will be 3 down = 27 to go.  I still have not had a chance to talk to the radiation oncologist to see why he changed my treatment plan (from 5 doses to 30 doses).  It is what it is......but I would like to know - just my curious self being me - curious.


I have been feeling ok.  Still side effects from the medication.  A few side effects from the radiation as well.


Christmas was very nice this year.  Christmas Eve dinner was crab boil (crab legs, shrimp, smoked sausage, potatoes, corn on the cob and Old Bay seasoning) washed down with root beer floats afterwards. It was different, but all enjoyed and were happy.


                  

Josh had to work Christmas Day so the usual tradition of early morning gift extravaganza was on Christmas Eve.  My in-laws were here and they were such a tremendous help.

Happy New Year.  

It is so hard to believe that is is twenty-twelve.  Where does time go?  Looking forward to a healthy year.

This is my motto today.........

:o) suckeggdawg.......