Day # 2....SuckEggDawg

Day #1 went as well as to be expected.  While waiting in the room with all of the other patients waiting for their treatment - you can't help but wonder:

"Why is she here" 

"I wonder what is wrong with him"

"That person looks so young"

It is so sad in the radiation dept at Moffitt.  I am sure the other patients are looking at me with the same inquisitive thoughts.  I wear a knitted hat that I made as to cover my horseshoe-shaped scar and my baboon looking stand straight-up hair.  Although I have a braided ponytail to one side.....according to them - they think I have all of my hair.  What could be wrong with her? - I am sure they wonder as I made eye contact with all of them.

A nice lady from a volunteer group at the hospital brought me a nice gift bag with some literature about the program and what they do.  In the bag was a beautiful teal blanket with the Moffitt logo.  Such a nice, thoughtful gesture.  The blanket is beautiful  - sweatshirt material on the top and fleece on the bottom.  (just the right weight too - I like heavy blankets).  I love Moffitt and I know that I am in good hands there!!

When my name was called - I stood up with strength and said to myself  "ok girl - lets do this". The two radiation techs were just as sweet as they could be.  We discussed my extreme claustrophobia and they definitely comforted me in saying that it was all going to be ok and gave me a few other pointers to do.

I laid on the table and once they placed the mask on me.....it felt A LOT tighter than the day that it was made.  After about 10 seconds - I made them take it off.  It was pressing my mouth and nose down as if I was wearing pantyhose over my head...... it was suffocating!!

I wore one of my mom's rings so she was there with me.....

After a few deep breaths and some further comforting words from the two techs - a moment of strength rose up in me and I was ready........ the mask went back on, locked in place on the table and the treatment started.  Although they were not in the room with me (not that would have made any difference  - I was being watched by a camera.  They had to take a few x-rays to make sure that the 3-D receptors on the mask and the cross points were lined up for the radiation beams.  The beam cross points can not even be off 0.1mm!!

After the radiation oncologist reviewed the x-rays - the abolishing beams started.  You can't feel the beams. You can only hear them.  Just sounds like static.....like a buzzing light bulb or that electric circle thingamagig at MOSI for static electricity.

I was doing good..... they would talk to me along the way.  I was doing slow deep breathing and concentrating on relaxing every muscle.  All of your words of encouragement, scripture that has been given, and repeating SuckEggDawg a few times helped.....  I did not even think about the mask on my face.  I just pictured myself standing up against a screen door with my face pressed tightly to it  :o)

The procedure took about 20 minutes, but the treatments after today will not take as long.

As a celebratory snack - Mark took me to DQ for a small blizzard = Georgia Mud Fudge.  It was awesome - even on a cold day like yesterday.

I do have a slight headache that I went to bed with and woke up with.....I guess that is normal since the brain swells after being hit with radiation.  If it gets too bad - I will let the doctor know. Other than that - no complaints whatsoever.

Day #2 is today.  I marked my days on the calendar and I should be completed by February 9th.

Thank you so much for your words of encouragement and support!!!

Abolishing act in progress.  I hope to report 2 months from now that I am tumor free and will never have to spend another day worrying about this thing.

SuckEggDawg y'all.  Love ya!!!

Day # 1 of radiation = SuckEggDawg....

DAY #1 of radiation at Moffitt today......


I woke up this morning with a peace that passes all understanding......I just hope it follows me in the treatment room and that is with me when my head is locked to the table while wearing the suffocating mask.  I think I shall name this mask.....too early for a name to come to mind this morning. I am sure after today's treatment - I will have an appropriate name for the mask!  Maybe I will name it SuckEggDawg.  That will give a whole new meaning to SuckEggDawg.  ???  

For those of you who don't know the history of SuckEggDawg - this was a term used daily between my mom and her best friend, Carol.  "SED" could mean OMG, holy crap, oh no, no way!, get out of here, I can't believe this, whooowhooo, 
hip-hip-horray.......you get the picture.  

It is a southern term that can also be used as a victory chuckle or as a cheer.

(say it..... it just makes you feel better! say it.... louder!! louder!! )

see - you feel better already, huh!?!?  

I received a somewhat bothersome phone call from the radiation oncologist's nurse on Wednesday.  She called to inform me that my treatment regimen has changed.....((heart sink to toes))


I was informed that instead of only requiring FIVE one day doses of the abolishing laser beams - the doctors determined after reviewing my 3-D MRI and simulation CT scans - that I need to continue with SIX WEEKS WORTH OF ABOLISHING LASER BEAMS!  That is 30 one day doses instead of 5!  I will be done February 9th!!  


From what I understand - the doctors were not impressed with the shape, size and location of the residual tumor.


I was also told that the tumor was VERY close to the part of my brain that controls motor skills.  My face and tongue had been going numb for a few years now and once again - I did not relate that to my list of symptoms to help with the diagnosis.  If I had not had the seizure 10 weeks ago - this brain tumor would have remained its happy little self just continued to grow, grow, grow.   The neurosurgeon was able to remove as much as he could without damaging the major vein that the tumor is wrapped around (like a corn dog).

I pray that the side effects are minimal....fatigue, tiredness, sore throat (I already have all of these daily), hairloss, burned/irritated skin.


Nothing to worry about - My wish is that this tumor is abolished for us to never have to deal with again!

Suck Egg Dawg - Lets do this......see ya brain tumor.  Suck Egg Dawg!!!!

Brain Tumor - this song is dedicated to you and 

the radiation that you will be HIT with today!  

Radiation - here we go......

Since we decided that radiation was the best way to ABOLISH the residual tumor  - I had a meeting with a different neurosurgeon and a radiation oncologist.  The type of radiation that will be administered is called FSRT = Fractionated Stereotactic Radiotherapy.  Instead of doing one single high powered dose - I will receive smaller doses for five days in a row.  It is better this way and easier on my brain.


NOW - the only draw back to this...... I have to wear a mask and it makes me feel claustrophobic..... not to mention that it  makes me look like something right out of a horror film.  Oh boy...... Let me first admit how claustrophobic I am.... I probably already have.  Even wearing a pair of socks makes me claustrophobic....    I can't even snorkel or scuba dive.  Confine me in any way and I will go crazy on you.  


Little did I know - this mask will cover my entire head - it has a front and a back and the two pieces attach in the middle alongside my ears.  The mask had to be molded to my face.  The radiation beams will penetrate my tumor within 0.1mm - THEREFORE - my head has to be totally still meaning - LOCKED DOWN!!


This mask will prevent my head from moving - PERIOD!  It is locked down to the table.


The mask is made out of a thermoplastic material.  The strips of plastic are immersed in warm water and then placed over your face.  The plastic is pressed to mold the shape of your face/head - completely covering your eyes, nose and mouth...... The plastic has holes in it - like fish net - but let me tell ya..... the holes don't matter.  You still feel like you are going to suffocate.  Once the plastic has cooled down - it hardens.


I was given a little pill to help me relax before the procedure and lets just say that it did not help at all!!!  By the time we were done - I was shaking like a leaf, jaw was chattering and I was almost in tears ready to hyperventilate.


After the mask was made - they put it back on me - locked it down to the table and put me in a CT machine that produced 3-D images to map out the route for the beams to ABOLISH the tumor.


Can't open your eyes, open your mouth or move your tongue.....totally still.


Have I made you a claustrophobic yet?!?!?


Here are a few pictures that Mark took while the mask was being made.  Just looking at the pictures causes me to FREAK!!

backside of mask is fitted and then a silicone strap was placed to 
attach to the locking strips on both sides. 

Silicone strip for nose bridge - like that little piece is going to allow me 
to open my eyes - yeah right.... 

thermoplastic strip is stretched over my face. 

locked down to table and the molding starts 

pressing the plastic to my face to make the mask.....they said it would feel like a warm, relaxing spa facial.... NOT!!!

pressing receptors on the mask that will simulate a 3-D image 
for the radiation beams

still pressing the mask.....

right about now..... I am ready to suffocate. 

pressing with cold towel to speed up the cooling/hardening process 
(doing me a favor since I was ready to FREAK)

my hands came out of the blanket and I was tapping my fingers - trying to get my mind off of not being able to breathe/open my 
mouth & eyes/swallow.... still freaking. 

simulating a 3-D CT to map/graph the map to my tumor

the end result..... and i get to keep it after therapy.  

I had a very advanced MRI performed today that will actually direct the radiation oncologist to the tumor. 

My treatments will start probably next Tuesday (the 27th).  I will go once a day for five days.  

I am going to have to have a serious talk with someone before Tuesday about sedation.  The little "relax" pill they gave me is not going to cut it.  Give me five of them or go ahead and knock me out.  

Can't think of a song to leave you with other than..... 

Abolishing in progress.....

a·bol·ish

   [uh-bol-ish] 

verb (used with object)

to do away with; put an end to; annul; make void

************************************************************

That is what we are going to do to my residual tumor = A~B~O~L~I~S~H! 

With a super beam of radiation!  It will not stand a chance.  

We went to Moffitt today.  I met with a different neurosurgeon - basically a 2nd opinion type meeting.  He recommended doing radio-surgery since I am still "young" and there is a definite possibility that the residual tumor will grow.  We do not want a repeat of this in 2, 5, 10 or even 20 years from now.......Mark and I agree with his decision 100%!  I will see another neurosurgeon at Moffitt and we can get this abolishing ball rolling!  Hopefully - the abolishing laser beam of radiation can happen the week after Christmas!!!  

My neurologist is very pleased with my progress.  

LYMPH NODES = the swelling is down - except for the one that has been there since the day after surgery, but they aren't too concerned about it.  They will keep an eye on it.  No "oncologist" needed.   

KEPPRA  = He said that as long as I have a meningioma - I will have to take the anti-seizure medicine.  He will start to taper the dosage on my next visit with him (in two months). 

DRIVING = I still can't drive until April 2012 - as long as I remain seizure free.  You don't know how many times I have come close to grabbing my keys and jumping in the car to go where I need/want to go.  Thankfully - my car is being used by Jake at the moment and the kid is NEVER home.  Hope I remember how to drive after six months.  

ENLARGED THYROID = going for blood work and then follow up.  I think from the gazillion CT scans I have had in the past two months - that is enough radiation to enlarge anything........too bad I can't use that excuse for my butt and thighs!! 

I plan on getting back to my 4-mile walking pattern on Monday in hopes that it will help the emotional fogginess I have been experiencing.  There are some days that you just feel like the whole world dislikes you and then other days where you feel like you dislike the whole world.  I do NOT like that feeling.  Side effects of exercise never hurt anybody! I will put on my iPod loaded with uplifting music and walk, walk, walk......may even throw a little bit of Zumba for my uncoordinated self in the mix too. 

  

Until next time my family, friends, BT survivor friends and others. Keep you posted on the abolishing act we are about to do on this tumor.  

I have to leave you with a song..... that has been my pattern.   I have to master the Charleston step in this video (@ :52) . WooT, WooT, WooT, WooT.....

If you are craving a tootsie roll at the moment..... not MY fault!

Mountain - get out of my way, but that is ok - you are teaching me something.....

I finally got the results of my CT scan of my neck I had last week for the swollen lymph nodes......... 

My doctor called me first thing this morning and 

rather nonchalantly said -

"I think you need to see an oncologist"....and "has anyone ever told you that you have an enlarged thyroid?" 


(((GULP - you lost me at "oncologist")))  

"other than that - keep taking the antibiotic and everything looks good. take care and have a nice day"......

seriously?!?!?!?  kind of left here hanging dude....... so......after a comforting call from my brother - I decided to call my neurologist at Moffitt.  His assistant will call me tomorrow to let me know what I need to do next. One foot in front of the other is what I am doing.....not letting this trip me, but if I do trip..... I am getting right back up!!!  


I had to go and get a copy of the report for myself to read since there was no getting any info from my primary.  I guess he missed the part where the radiologist suggested a PET scan for correlation.


The antibiotic is working and I am starting to feel better. I obviously had an infection of some sort, but still not sure from what/where.  Who knows....maybe I picked up something while in the hospital.  My white cell count was elevated, but is back in the normal range (high normal range). 


No worries y'all.  I am not scared, I am not afraid..... I am just tired - tired of not being normal....tired of feeling like I complain all the time.....frustrated. This blog is not my complaint board.  This blog is a way to keep loved ones informed and to share with other BT survivors!  I have never faced a personal infirmity like this before.... everything that I learn from this - I will share with others. 


I do know one thing - I have a family that loves me and friends who care with all their heart.  I am so thankful.  Oh so thankful!! 

This is just a season and this too shall pass.  

(excuse me while I give myself some pep talkin')

The good Lord gave us mountains so 
we can learn how to climb....... 

and I am learning to climb! 
This one is just a little mountain - I can deal with that.  

Sending get well wishes to Bill tonight.  He had surgery on his back this morning and he is already home from the hospital.  You just can't keep a good man down.


This week is my youngest son's last week of high school and he will be done with high school.... what? wait a minute?  How did that happen so fast...... Graduation is not until June 2012.  So happy for him!  Way to go Jake.  I always say this and I always will.... Momma Loves!!! 

If you have never read this book - go get it and read it.  It is the best!

8 weeks since seizure....

So - last night (Saturday) marked the 8 week point since I had my seizure.  I could not help but look at the clock and think back from what I remember at certain times that night.  This coming Tuesday will be 8 weeks since my craniotomy for removal of the meningioma.

I have not had a seizure since that night.  My last EEG showed no evidence of seizures.  I am hoping that when I see the neurologist on the 19th - that he starts to wean me off of the medication, however, I do understand that the residual tumor will be the main focus. If radiation therapy is in my future - then lets do it and get it over with.  I am learning to take it slow.....but Lord - give me patience.

This past week - I have been dealing with swollen lymph nodes on my neck, sore throat and nausea.  It has been extremely painful.  I am happy to report that I think the antibiotic finally started to kick in..... YEAH!  I now only have ONE lymph node that is swollen....this is the same one that I noticed the day after surgery.  The neurologist may want to order a biopsy if it is still swollen on the 19th.  (Praying is is GONE by then!!).

I am still doing stupid, crazy, out of the ordinary type things......I just have to laugh, but must admit that it is frustrating.  I asked one of my sons the other day as he was leaving if he had "his house to the key".  He just looked at me and laughed  - me not even realizing what I had said, but he understood what I meant.

<3....Kick off your Sunday shoes y'all...... Hope you all are well!  Happy Sunday!

Is it Saturday yet??

Why does everyone say "is it Friday yet?!?"  Isn't it really Saturday you are looking forward to?  It is the weekend that brings joy and relaxation.

Don't even ask me what day it is..... can't even tell ya!!  LOL!  I only know the time of day when my reminder alarm goes off at 8am and 8pm to remind me that it is medicine time...seriously!

It has been a tough week.  I developed very swollen, painful lymph nodes Sunday night.  They continued to get worse.  I do not have a fever that usually goes along with a sore throat and swollen lymph nodes....that is obviously a sign of infection.  So.... back to calling the doctors.

Started to get the run around.....primary says call the neurologist - neurologist says call the primary.... I say - call the neurosurgeon.  I knew he would help me.  It was either that or the ER......

My neurosurgeon sent me for blood work, a STAT CT scan of the brain with contrast to rule out a brain infection.  Was then immediately sent for a MRI of the brain with contrast for reassurance - NO SIGN OF INFECTION in or on my brain!!!!!  Good thing - yessirrebob!

However, what is causing my lymph nodes to be the size of grapes???  My neurosurgeon was so kind and truly showed concern when he felt my neck.  He is an excellent surgeon. I am so thankful that he was on call the night I went to the hospital and that he is the one who was entrusted with my care.  

I was then sent to my primary provider.  He started me on antibiotics, ordered a CT scan with contrast of my neck and more blood work.  I was given four sheets of CT scan images, but I can't make heads or tails for nothing.  I see a bunch of white blobs that I don't think should be there.

My neurosurgeon personally called me this afternoon to check on me to see how I was feeling.  He was hoping to hear "much better", but instead was told I am still waiting to have diagnostic testing.... he sounded just as frustrated as I am.

I have been injected with so much contrast and had more needles stuck in me this week - I should be leaking contrast from my arms.  My veins are terrible right now......I feel so bad for the techs/medical assistants who have to find a vein on me.  I guess I need to drink more fluid....does sweet tea count as fluid?

I have mentioned the new hairdo that I am sporting..... now - you tell me that I do not look like a baboon and be honest..... seriously! (I know a lot of people who would not show a pic like this..... I have nothing to hide.  it is what it is..... once it is long again, I will take my baboon-looking self to my hairdresser and no one will ever know)  Now that is just purdy right there....... and yes - it is coming in grey......I am blaming that on my worrisome self....

You know the baboon makes you smile......  :o)







Looking forward to what tomorrow brings.... good news, bad news ....whatever - I just want to know.   I am in good hands and I know so many people are still praying for me.  Thank you my friends!

I just have to share..... this song makes me happy.....it is the reminder song on my phone alarm for medicine time.....


"You got worries - you can drop them in the blue ocean, but you gotta get away to where the boat leaves from"....... <3 y'all...

7 weeks tomorrow.... OMGosh!

So it has been almost two months and I am still adjusting to this......my new normal.  I don't like the new normal (and I don't think anyone around me does either).  once I am allowed to taper off of this medication - life will be normal again. I look "normal" to you on the outside (other than my kidrock-baboon hairstyle), but on the inside - there is a different normal going on. The little simple things - take effort now.

GOOD NEWS: My EEG that was done last week showed NO evidence of any seizure activity!!! I was so happy and that continued my HOPE and courage!! However, I still have to continue to take the anti-seizure medication since there is residual tumor. (i understand.....) MRI is scheduled for next week and then I see the neurologist and new neurosurgeon on the 19th. Stay tuned for GOOD NEWS!! :o)

I started back to work.  It is so nice to be back!! (not a lot of people can say that)  Although - I find that I get sidetracked while trying to multitask.  I used to be able to do ten different things at once..... now it just takes me a little longer.  I guess that is where patience comes in..... something I lack with myself and could use a huge can at the moment!!

I am still sporting the KidRock look, but now you can add a touch of baboon to the hairdo.  Did you listen to the Kid Rock song I posted = "Born Free"?  That is dedicated to my residual tumor.  Dear Tumor:  "You can't  keep no chains on me" - you hear me!  When I am done with you -  "I will yell it from the mountain high".

I ended my last post  with Hakuna Matata.... no worries.  well.... I am trying, I really am.  Sunday night- I developed a swollen lymph node directly behind my ear.  It is hot and so very painful!  We called the neurosurgeon and he wants me to come in Tuesday to see what is causing the swelling..... the swelling has increased throughout the day (Monday).... I think just about every lymph node I have on my head and neck is swollen to some degree.  I made the mistake of Googling to see what it could be..... so - I am worried. Hoping that I get an antibiotic to send this infection or whatever it is trying to hinder my healing right on down the road.

Asking for prayers since so many of you have lifted me up this far.

There are so many days that I wish I had me a Ms. Aibileen (from the movie "The Help")  I would treat her with respect and she would be my friend - unlike how the snobs in the movie treated her. I could use the wisdom and knowledge from Ms Aibileen and obviously some help with things that I just can't do without wearing myself out.  The movie comes out on DVD Tuesday so I will be going to get it and hope to watch it with a friend who is coming over late Tuesday afternoon!!