I want a big fat cupcake...

Of course I am not going to ramble on about cupcakes. 

I really want one though...

I heard my phone chime when I pulled out of the carpool lane. It was an email from The Preston Robert Tisch Brain Tumor Center at Duke. 

That is a mouthful and so I call it "The Duke Brain Tumor Center."

The email was lengthy with lots of forms attached and the wording of things can move fast IF I do my part first. 

I got right to work.  Who wouldn't?!

I had a question and called.  They called back within 10 minutes. 

The woman I spoke with also said that I could very well expect a call from Dr. Friedman tonight. 

Whaattt?!!  Dr. Friedman?!!

I feel like I am waiting for a phone call from The President himself!!

So who knows...

Here is another clip of the email:
"...an appointment is scheduled, it will be a 2-day visit.  In addition to your time with the neuro-oncologist, your visit will include time with other members of our team, including a fellow, a nurse practitioner or physician assistant, a social worker, a child life specialist if appropriate, a nurse clinician for teaching and education, and other professionals that may be able to assist you and your family.  We work as a team – you and your family are at the center of our team."

Just a TAD overwhelming.  We are SO lucky we have access to people like this nearby.

I am staying busy throughout all of this.  I have project lists galore, laundry to clean, rooms to deep clean...Kids to play with...and really wish I was back in fantastic running shape because all the nervous energy could help me run a marathon in record time!

I got great News from Logan's Teacher today and that deserves it's own post though.  

It will come soon. :)

I can be gooey sentimental and day dreamer like...

For example:

This morning getting in the car to go drop Logan and Aidan off at their schools. 

I start the van and start strapping the Boys in. 

The radio is playing

Rodney Atkins

Immediately following was the song Andrew and I danced to on our Wedding Day. 

End of the month will be 8 years.  :)  

What a crazy 8 Years. 

Yesterday

YESTERDAY, while I was running errands Duke called. 

 Yes, on a Saturday!!

They told Andrew that first thing tomorrow, Dr. Allan Friedman will review my path labs and scans. They will call Monday afternoon or Tuesday to set up my appointment.

Soo...my Neurosurgeon is one of the best in the area. He is “young” and Dr. A. Friedman is his mentor. Thanks to my Mom's Bosses (they are Doctor's) they have checked into my Neurosurgeon. They said his credentials are fantastic and found that out (mentor thing...). They said his medical schooling is phenomenal.

Dr. Allan Friedman is an AMAZING Neurosurgeon. Look up his name. You will see...

Just for comfort for me I looked up the Top Neurosurgeon's in the US.

US News Health

There are 624 neurosurgeon's on this list.

Dr. Friedman has a star next to his name. That means he is in the top 1%.

Yes, so my Neurosurgeon is awesome and a protege of one of the top 1% in the Nation.

He (Dr.Grossi) is respected enough that one of the top 1% is willing review MY tumor.

It kind of makes me feel the same I did when I watched George W. Bush speak at ECU.

Star struck..amazed...kind of a cloud nine feeling...just this time wrapped in a nice blanket of fear too.

This entire situation is now at 358 days in the making.

It is scary, overwhelming, anxiety filled,denial.....and add about 1 billion other feelings in there. (But still very hopeful throughout it all.)

I am not sure if there are really a billion feelings but it sure feels like it!

Some moments it doesn't feel real and others it sure does. Here and there for a few minutes I almost forget about it.

I am going to share what Andrew said after he took that phone call:

“Shit just got real.”

I keep visiting the Duke Tumor Center's web site and try to imagine myself walking up to it the day of my appointment.

I have told Andrew that there will probably be a stain or puddle on the ground following me as we walk in there.  

An answer

So here goes...

My post-op appointment was originally scheduled for February 19^th. After the biopsy my neurosurgeon told everyone they would call when the results came in. He mentioned it could take up to two weeks.

At the time of my stitch removal (9 days) they had no information.

The days became agony.

By Monday I figured they HAD to call. My impatience got the best of me. I decided I wouldn't call and ask if they had them I would ask a different question to lead into that.

I called the surgical nurse and left a message with the gist of 7-14 calendar or business days?

So I spent the day taking moments to stare at the phone, yell at the Boys and try to will it to ring and when it did not say “Duke” on part of the caller ID I was not happy.

I was constantly forwarding the house calls to my cell while I was out and when I get home cancel it. Tuesday is appointment day for the Bitty and I waited and followed the same routine.

I was in our driveway getting the Boys out of the van after picking Aidan up from carpool when my cell rang...

Before when I have called and it took that long for the call back it was my neurosurgeon with news that we could hold off on the biopsy.

My heart stopped and adrenaline filled me.

Who is on the phone..the nurse or the doctor.

I had a dream a nurse called me with an answer. Is my dream true?

Well, it was the Nurse.

The conversation went:

Nurse: Dr. Grossi wants to see you this week to review your path labs.

Me: OK.

Nurse: I see your post-op is on the 19^th. You don't want to wait that long. Do you?

Me: No.

Nurse: Well, we can roll your post-op into an appointment this week too.

Me: OK

Nurse: How about first thing Thursday?

Me: OK

Nurse: I can do 8:15a. Is that too early?

Me: We'll make it work.

A few more non specific details and we hung up.

I dialed Andrew. He couldn't get to his phone. (I had talked to him maybe 5 minutes before)

I tried to text him to pick up but I could barely type.

I sent him a bunch of letters with possibly a few words in there too.

So I called him right back again.

He picked up.

I told him.

My mind goes a thousand miles an hours most days. It definitely sped up even more.

My thoughts:

He wants to see us in person.

They had to find something out.

What are they going to say?

Aidan has school. What are we going to do?

It must be bad.

He is going to refer me to someone else isn't he.

And the wonders went on..

I figured he would have called or had a nurse call to say they were not conclusive.

Right?!

Maybe I am wrong?!

I also felt a sense of relief of no longer having my heart stop when the phone rang.

I had a countdown to hopefully an “answer.”

I figured sleep would be hard to come by.

The 3 or so nights before the biopsy were pretty sleepless after I would have a 4 or so hour stretch. Usually up by 2-3am.

I woke Thursday at 3am.

I would sleep in maybe 15 minute increments and stare at the clock.

Toss and turn,

take a drink of water

and every so often feel like a Sumo Wrestler was sitting on top of my chest..

maybe an elephant...

or a house ...

My alarm was set for 5:15a. I got up before it and hopped in the shower.

I got myself ready.

Andrew got a shower.

The Boys woke up early.

We were in the van by 7:30.

Time was slow and fast.

Has everyone read this entire novel??

OK will shorten it up. 

  ( I tried..it didn't work..)

We waited for 30 or more minutes and heard him in the room next door.

The PA came in. She said he would be with us in a few. He got “accosted” at the hospital that morning. She checked out the biopsy site and asked how I was doing.

Then she said..

“He wanted me to tell you that it is what he thought it was.”

Me: I know.

PA: Does that make sense to you?

Me: Yes.

PA: OK.

I made a few random comments like I do when stressed.

She left and then within 5 minutes we heard him finish up with his other patient.

The door opened.

He is really great and we record our visits with him so we can process it all at a later time too.

After reviewing our over 25 minute clip I have heard things I missed on Thursday.

So....

pins and needles yet?!

Or have you scrolled down to the bottom and say screw all this rambling?

Dr. Grossi told us from the get go he believed it to be a low grade glioma.

The issue is, what kind of glioma?

I have a Grade 2 (low grade) well-differentiated astrocytoma.

Astrocytoma's are a type of glioma.

A grade 2 is very slow growing. (GOOD!!)

We already know from the last almost year of observing that it is growing at a slow rate.

It is not malignant. (GOOD!!)

We knew that already too.

Astrocytoma's grow “tentacles” that creep into small crevices of the brain. (YUCK!)

Right now mine doesn't show any tentacles on the MRI. (GOOD!!)

A grade 2 can change at any time to a higher grade. (YUCK!)

Grade 3 and 4 astrocytoma's are very quick growing and aggressive. (SUPER YUCK!)

If growing will only metastasize to other parts of my brain not my body.

Recurrences are possible and usually come back more aggressive than the first time. (BLEH.)

Temporal lobe is the best place to have them. (GOOD!)

The Dominant side temporal lobe is not the best. (BAD)

Mine is on my dominant side. (BOO!)

HOWEVER...we found it early while it is small enough. (GOOD!!)

We have about a half inch of leeway from what appears to be the end of the tumor before we hit the hippocampus. (GOOD!)

They won't know until they get in there and see what it really looks like to be sure.

They might not hit what seems to be “normal” tissue.

Dominant side hippocampus controls my speech, memory and motor function.

He said I could live without it a normal productive life but with noticeable deficits.

It would be visual memory, naming things, cognitive memory to name a few.

RIGHT NOW there are NO deficits and they won't want to give me any.

As he quoted the Hippocratic Oath, “First do no harm.”

It should be removed. It will be removed via craniotomy.

Not today, not tomorrow but in the upcoming months.

In the meantime he wants us to go visit The Duke Brain Tumor Center.

We will consult with them and then follow up with Dr. Grossi and schedule from there.

Bottom line is, surgery will not cure it. It is a chronic condition that must be monitored the rest of my life or until they find a cure.  

Summary of the 8 days post biopsy

Here we are, practically two weeks post op.

Still no word on if there are any biopsy results. I am climbing the walls with anticipation and of course riding the roller coaster of life some days better than others.

The recovery went pretty well. Mainly I had a lot of pressure in my head and nausea. They gave me meds for nausea but it did not go away completely while taking it.

I still feel some of the disorientation but then again I have felt that for over a year now. It was more pronounced after the surgery though.

The Kids and Pups came home Tuesday by lunchtime.

Logan came home with hives on his legs and a rash all over the rest of his body. He was on an antibiotic.

Only because he had been sick for over 3 weeks and appeared to get better for 2 days only to get worse again. The week before my surgery I took him to the pediatrician and they gave him a script for the antibiotic. I jumped the gun because I was afraid that he would be a sick kid and have to go to the pediatrician within days of my surgery. I just knew we would have to go. Well sure enough we did but for the hives and rash.

My bad. Smooth move Mom!

Even thought I felt absolutely horrible I insisted on going with Andrew and Logan. Of course in our true family fashion there has to be a twist to it.

Not even a minute before the Nurse Practitioner came in Logan's nose began to bleed. For him it wasn't his typically gushing nose bleed but definitely not a drip drip kind of one.

Yeah.

So bottom line they say he is allergic to penicillin. A week later he still had the rash. He went in for allergy testing for food. (He's been tested before with no noted food OR penicillin issues.)

We heard today all tests are normal. Not even a hair on the line of “sensitive.”

Back to Tuesday..I felt terrible. Headache, pressure, nausea and super sensitive to noise. I stayed in our room to muffle the sounds of the Boys. I hated it but even the slightest noise caused me pain.

By the end of the day Sweet Baby D knew I was upstairs and he sat at the gate downstairs saying, “Mama, were are you??” Of course it was in his sweet baby voice with the wonderful 2 year old pronunciation. Andrew let him up and he came and laid on me. He is always constantly moving and climbing but that day he stayed still snuggling me for at least 30 minutes.

Wednesday was the first day back to school for the Big Boys. I dreaded being in the car. My Mom came to help as I could not pick up the Boys or drive. I felt incredibly nauseous and exhausted.

Thursday, Kate helped us out. I felt a little better not as exhausted just tired and still had nausea.

Friday there was a storm system moving in and I was in a state of constant motion sickness feeling without any help of any kind of motion...

I slept horrible. I prefer my left side but due to the soreness and the wretched stitch could not lay on the left side of my head. I also could not lay flat without feeling extra pressure in my head.  I slept propped up on pillows on my back or right side. In my sleep I would roll to my left and wake up to pain and move back.

After 8 days I could lay flat and sleeping was much better. This past Wednesday I got my stitch out so left sided sleeping is possibly only a little tender as long as I lay "just right". The numbness feelings completely subsided by day 8 also.

So here we are...still waiting and trying to find patience.

Hoping our Prayers for a conclusive biopsy are answered.

I think I am at the end of my waiting patience...

A few photos

It may seem weird to some but overall curiosity gets the best of everyone. 

That is why I had Andrew take pictures.  

The first request I had was the photo from hours after surgery.  I really wanted to know what it looked like and since I couldn't see it Andrew helped me out. 

The next photo was one I had him send my Sister.  It was also after all the numbness started to wear off I looked miserable but that is mostly because I realized how much it hurt to try to smile. I tried but not so good.  I wanted to sent a picture to my Sister to show her Kids (if she wanted to show them).  Last year not long after we found out our Church had their prayer blankets out after Mass.  My Sister's Kids wanted to get me one.  I found out one of my Friend's Mom is the one in charge of the Prayer Blanket Program.  

I thought it was really sweet of them and felt guilty too.  I felt guilty because I didn't (still don't) know if I am "sick."  I then told Andrew that I was going to start sleeping with the blanket so it was familiar to me in the event of this tumor becoming more of a concern.  That way it would be broken in.  So I had him get the blanket out of my bag and lay it on me so the Kids (again, if she wanted to show them.) and her could see I had it with me.  

Once home and after washing my hair on Tuesday evening I had Andrew take a photo of all the cuts on my head from the stereotactic cage and of the biopsy site. 

The biopsy site after applying some ointment on it..so it really hides it. 

The mark on the back side of my head from the cage. 

On my hairline near my forehead make from the cage..this was the first one I found  in the hospital.

The smallest one was being my ear on the biopsy side.  

My Experience with my Stereotactic Brain Biopsy

So this is what filled our Monday morning.

We woke up super early and were one of the first cases of the day.

5:45 we entered the hospital. We got checked in and waited for our beeper to buzz.

They took me back to prep me. Urine samples, blood samples, weight check and verify medical history.

I had a wonderful nurse and a great technician to draw my blood. I met my Nurse Anesthetist and then the Anesthesiologist. I met my Surgical Nurse. They finally they let Andrew come sit. I had to repeat to everyone why I was there and after the 4^th or 5^th times I kind of teared up explaining it. My Neurosurgeon finally came did his 30 second bit and said, 'See you in there.'

The Nurse Anesthetist slipped me an sedative and I said, “Goodbye” to Andrew.

They wheeled me to the OR and I mentioned how crazy cold it was in there. They asked me to move to the OR table then told me to move my arms to the side while they put this big pink boards on the side of the table and then I was in recovery.

I was watched closely by a very nice man. He kept asking me my name, where was I, what procedure I had done and what day it was. He would often get on the phone that was attached to the column next to him. Then repeat his questions. He asked me if I was a runner of any sorts since my heart rate was maintaining in the 50's. I told him, “I used to be. I don't run like I used to, but I want to again.”

The CT was open so it was my turn to go. That was a quick scan and I told them, “That was way better than the MRI.” (time wise) The took me back to PACU and after a nurse calling around looking for my bed and fussing people out. They wheeled in my bed, moved me to it and took me to my room on the Neuroscience floor.

I was greeted by Andrew, Mom, Dad and Mr. R. The nurse (who was looking for my bed) and the man ( I assume a nurse) who stayed by my side instructed them all to leave the room while they got me in and set up.

They decided I no longer needed to keep the nasal cannula. They reported my stats to the medical staff on the floor then finally let everyone in.

I was tired. They all stared and we had awkward conversation.

I finally asked, “Do I have a headband on?

They all laughed and said, “No.”

I said,”It feels like I am wearing one.”

With a sterotactic biopsy. They attach a frame/cage to my scalp in various places and use that plus the brain lab series (3D image of my brain) to guide the needle most accurately into the tumor. The “pins” for the frame are quite sharp and left three open sores on my head. They also numb your entire scalp in preparation of the cage.

That is what I was feeling..or not feeling..it was a numb head.

Odd.

I had to have a “clear/liquid” lunch. GROSS! I am not a jello fan. I don't want a cup of broth. Oh yes and they cut my “chewing” muscle so it hurts to open my mouth and chew.

I slept on and off all afternoon, they monitored my stats and gave me pain meds.

Andrew got the nurse when I got nauseous and lost feeling in my head/face. Neurologically everything was fine she said when the nerves regenerate, some people feel numb, tingling, sharp pains or nothing at all. I was getting the numb/tingly all over my face..it creeped me out especially when the right side of my face got numb too.

The nausea eventually passed. They said I could go home but needed some antibiotics before I go. Well, that took FOREVER...one to get the antibiotics then for them to go through my IV. Finally well after 7p I was able to be discharged if I wanted. Andrew and I talked and we thought we would try it.

She walked us through our discharge instructions. One thing she mentioned that I had already noticed was not laying flat and not holding my head up. The amount of pressure that would come was terrible. My head felt as heavy as a bowling ball too.

I got dressed and Andrew then went to get the van.

Enter nausea bout number 2. The Nurse Mario went to get me a wheelchair. I began to feel horrible and went into the bathroom. I couldn't get any closer to being sick. After a few gags I stopped and felt a little better. I went to find Mario and sit in my chair.

Too bad the nausea lasted the entire time in the van. We stopped by the pharmacy to fill my prescriptions, one was for nausea. I requested Andrew park across 4 spots as to not turn the van. They did not take long to fill but it sucked for me. I eventually got a bag to hold onto in the event I got sick. Well maybe 2 miles from our house it took me over. Andrew was great. We got home and I headed straight to our room and rinsed out my mouth.

I slept on and off all night constantly changing positions due to a pretty sore head.

Medical wise I handled it great. It could take anywhere from 1-2 weeks to hear the results. They said they would call me when they got them. I get my stitch out Wednesday and have a follow up on February 19^th. I should find out before the 19^th. ( I sure hope so.)

Again, I pray that they are able to get a diagnosis from the biopsy and we can move on from there. I want to get this done and over with. I know it's not that simple but if it needs to be removed I want to go ahead and get that done with.   

Here is what it looked like right after surgery.  Since I couldn't feel my head and I definitely couldn't see it..I asked Andrew to take a photo for me..

Mom always said I didn't need any more holes in my head

So I owe an update for Aidan's 5^th birthday, Daniel's 2^nd and Christmas.

We also had Aidan's final Christmas Chapel at his Preschool.

I had another MRI and two days after that was Andrew's 31^st.

Our PC is full of photos so until we take the time to remove some our Christmas Photos are stuck on the camera.

I want to take the time and possibly write a short novel regarding the next few days.

Jumping back to Dec. 20^th...

I had my 3^rd MRI of 2012 and immediately after, met with my Neurosurgeon.

The tumor is very slowly growing/changing. This again warrants a biopsy.

I expected this and was quick to agree.

The biopsy is scheduled for January 21^st.

Yesterday, I had my pre-op MRI. It was a brain lab series that creates a 3D image of my brain. On Monday they will use this like a GPS to accurately locate and remove 3 small pieces of the tumor to send to the lab for diagnostics. Following the biopsy I will have a CT Scan to monitor if there is any post-op bleeding. I will stay overnight for observation.

There are risks with the procedure, bleeding at the site of the biopsy, seizure and infection.

Another possible problem is an inconclusive biopsy. There is a 10-20% chance that the samples of the tumor will not give any helpful information.

The procedure will involve making a small incision in my scalp, then drilling a small hole for the needle to go through. The needle is about the size of a piece of spaghetti and will have a small oval cut out on the side to “suck” out three pieces of tumor the size of a grain of rice.

They will look at the pieces in the OR however, they will not be able to tell what it is, they will send the pieces to the Duke Brain Tumor Center and we will get the results of the analysis at my follow up appointment on February 19^th.

I am OK. I know that everything will be OK. It doesn't have any other option. That said, I don't know where the road to OK will lead us but the end point will be OK. I am concerned over possible complications. The chance of risks are a small percentage but I tend to fall into the small percentage.

I go back and forth on the reality of the procedure and then into the it's all a dream feeling.

I did feel a lot of anxiety over yesterday's MRI. Andrew and I also are brainstorming for cheesy jokes. It keeps us laughing and try to keep a light mood.

The goal is to keep as much “normal” routine for the Boys. Obviously, it is something that is hard to grasp no matter what your age. The younger 2 will be clueless. In this aspect I am very grateful Logan is still only a 2 year old instead of an almost 4 year old. Aidan doesn't know much. He knows I had appointments but until December that was all he knew.

In December we told him I had to have a picture of my brain and then talk to a Doctor about it.

Only because they changed my appointment a few times and that changed the babysitting schedule we needed. Aidan likes to be informed of his schedule so he get a monthly calendar of events for home and school. He wanted to know why everything kept changing.

When I made his January calendar he came up with a few questions.

Regarding yesterday morning's MRI..

Q:Why is Grandma taking me to school?

A:Because I need another picture of my brain.

Questions about Monday

Q: Grandma will be here when I wake up? Where is she going after she takes us to Aunt Melanie's?

A: Yes, Grandma will be here when you wake up. Grandma will go to the hospital to be with us while the Doctor checks out part of my brain.

Q: I am going to have a sleepover at Grandma's?

A: Yes.

Short, simple and to the point. For once he did not probe further BUT there are still a few more days.

His Teacher's are aware of what is going on in the event there is any backlash at school or he starts spouting off about brain pictures.

Logan's wonderful speech therapist will head to my Parent's house for his Tuesday morning session.

Logan's OT knows that someone else will bring him to his appointment Tuesday afternoon.

Luckily, Daniel always seems to go with the flow.

I am trying to keep things organized to reduce as much controllable chaos.

I used to be organized but recently not so much. I am working on staying on the ball which means a lot less sleep than our already piddly amount.

We appreciate all prayers if people are willing.

I know things can always be “worse” and if they are I know we will make it through.

Prayers help. My biggest prayer is to have a successful informative biopsy and of course with no complications.

I will try and keep things more up to date as possible.

Andrew and I must be at the hospital at 5:45a. The surgery is set for 7:15a and should last about an hour. I should go home sometime on Tuesday.