PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Wednesday, November 30, 2011

Blast from the Past

I'd been dreadfully neglecting my neurosurgeon checkups- mainly (well all) because of the fact that I couldn't have an MRI because of the magnetic port on the tissue expanders. I had been in contact with my doctor's office and the nurse told me to call when I was able to have an MRI. When I found out that my exchange would be pushed off until "late winter/early spring" I decided that it was ambigious enough that I should call my neurosurgeon's office again. I let the nurse know, and she said for me to come and see the doctor just to touch base.

After three hours I finally got sent back to see Dr. Sorenson. He is by far one of my favorite doctors (of course Dr. King my BS and Dr Cooper my PS are right up there with him). He just laughed and said he'd schedule me for an MRI in 6 months ( I told him if my expanders weren't out by then that I was likely to rip them out) and in the mean time if I had any problems that I could call and he'd order a CT scan.

After I left I realized that it'd been 9 years since I was first diagnosed. MAN time flies! I can only imagine the next 9 years and I'll be talking about how I can't believe my PBM was that long ago. I realized that I'd talked about being diagnosed with a brain tumor, but never really told about it. Granted, it WAS 9 years ago, but I still remember it like it was yesterday (a little fuzzy on the details though).

Like I said in my previous post, I had began having vision problems and horrible headaches. We'd pushed them off as migraines, but they just wouldn't go away. One day as I was driving, everything got blurry and it looked like the cars were weaving in and out (they weren't) I pulled over and tried to calm myself down. When I got home, I told my Dad what had happened, and he finally agreed that I needed to find out what was wrong.

The next day I went to an opthamologist, who took pictures of my optic nerves and then ordered a CT scan. He thought I had a condition called thyroidopthamotholy (a fancy term for edema in the eyes) and made an appointment for me with another, specialized, eye doctor. I had the CT scan, and went home.

The events of the next day are very well ingrained in my mind. I can honestly look back on it and say that was when I realized just how much inner strength that I had. I was asleep and my cell phone rang. I checked the caller ID and saw it was a number I didn't recognize so I just let it go to voicemail. Curiousity got the better of me, so I decided to listen it. It was the opthamologist, urging me to call him ASAP. I called his office and spoke to the secretary, telling her about the message he left. The secretary hesitated and then said "Well..he's not in today, but he wants you to call him at his house" As she was giving me the number, I started to sense something was really wrong. I asked why he was insisting I call him and she replied "Well, he wants to make an appointment for you with another doctor." I knew something was up, but I replied ok and dialed the doctor's number. When he answered, I told him who I was and nervously laughed a little. He cut right to the chase and said "I got the results of your CT scan. It's not what I thought it was" and I said "Well, what's wrong with me?" and he says "The radiologist who read your scan saw a mass growing on the base of your cerebellum" I was shocked. "I have a brain tumor??? Is it cancer??" he says "I don't know, but it's indictive of a disease called Lherrmitte Duclos which is a benign  brain condition" "Do I need surgery?" "I honestly don't know. I've arranged for a neurosurgeon to meet you at the ER at Methodist University." He then starts telling a story to lighten the mood, that most neurosurgeons are out of town at a conference, but he's managed to find one that's stayed behind. I'm really not listening, I have a million thoughts rushing through my head. Everyone I'd ever known with a brain tumor had died. "Can you repeat everything you told me to my Dad?" I asked him quietly. "Sure" he said. I ran downstairs and thrust the phone in my Dad' face and went to sit on the stairs. I heard my Dad tell the doctor bye and he came over to where I was. He gave me a hug and told me everything was going to be fine. "Go take a shower" he told me "And then we'll go to the hospital"

I went upstairs and showered and changed. I still remember what I was wearing...a black tank top, jeans, and flip flops. It was October, but in South you can never tell the weather :) When I came back downstairs I saw my grandmother crying and she gave me a hug "Heaven's not ready for you yet" she said. (Looking back, this probably wasn't the most helpful thing to say, and the fact that she was crying her eyes out almost discounted any comfort she was trying to offer). On the way to the hospital, we had to stop and get the films from my CT scan the day before. One the way I called my work to let them know what was going on. When we got to the hospital I remember looking around the outside thinking "Will I ever see this again?"

My Mom was on a field trip that day (she was a Kindergarten assistant) and my Dad didn't want to bother her until we knew more. I don't remember waiting terribly long in the ER (a miracle in itself) and before long I was whisked back to a "room" A nurse explained that my doctor (whom I had yet to meet) had ordered steroids for me to help with the headaches. She also explained that my doctor wanted an MRI and that I'd be going back shortly. I repeatedly tried to call my Mom's cell phone but she didn't answer. I finally called the school and left a message with the secretary asking her to tell my mom to call my cell phone ASAP and that it was an emergency. I guess I figured that "Your daughter is on a bed in the ER receiving steroids through an IV and about to meet with a neurosurgeon regarding a brain tumor" wasn't quite the message one would like to receive, but I guess my cryptic one wasn't any better.

I had the MRI and I remembered that my pastor and some people from church had come to the hospital. I got taken back to my room and finally saw the two residents from Semmes Murphy. They held up my MRI films, and I was startled to see it. One half of my brain was twice the size as the other half. The doctor gently explained that I had developed hydrocephalus, caused by the tumor in my cerebellum. He said that my vision problems were caused my the pressure put on my optic nerves. He then followed that statement up with something I hadn't really counted on hearing "We are going to admit you to the neurotrauma ICU"

WHAT!? Hold the phone..I hadn't planned on being admitted, much less to the ICU. And the NEUROTRAUMA ICU? That sounded like a place old sick people went, not young 19 year olds. I was finally taken to the ICU that night aorund 8:30 or so. To another "room" No TV, no phone, no walls. Fantastic.

The first night was SO long. I remember a nurse coming by to give me a sponge bath (yes a sponge bath at 19. And people wonder why I have no modesty). She was so nice and what she was using smelled SO good. She said that it was bath gel that she used for her patients. I finally got some sleep after that.

**SIDENOTE: After the steroids got started I felt fine. You got that? FINE. So imagine. a 19 year old perfectly healthy laying in a hospital bed.**

The next day I had another awesome nurse. She helped me get into a chair and wheeled me over to the nurses station so I'd be included in the nurse's conversation. When I got back into my bed, I finally met Dr. Sorenson. He was so nice, explaining everything to me, how I had a mass at the base of my cerebellum. The mass itself wasn't a problem, the hydrocephalus it caused was (hydrocephalus is literally "water on the brain" It's when cerbreospinal fluid cannot drain properly). He cautioned that while they'd run tests to determine what was wrong, I needed to prepare myself for having surgery. I giggled nervously and said that the thought of brain surgery freaked me out. He said that I wouldn't be normal if  I was ok with the idea and he promised I wouldn't have to write out my will just yet. The doctor looked at me and then looked around and said "You're bored aren't you?" I must have looked desparate when I said yes because he said "I'll get you moved to the back of the ICU where the TV's are" One of the nurses brought me lots of books to read too. And they'd bring me lunch from different restuarants on their lunch break.

In the 10 days that followed, I had several tests run (one of which was an artierogram, which I've tried to block out. I've told Dr. S. on several occasions since that I'd rather have surgery again). Then I had surgery.

One of my very sweet nurses bought me a teddy bear for my surgery. She said she was going on vacation and couldn't be hear but wanted to know she was thinking of me. She brought me a telephone as well. If I had to stay longer, I was thinking of getting a tub built in my little room.

I remember how nervous I was the day of my surgery. I had plenty of visitors off and on, and that helped to take my mind off of what was going on. When they wheeled me to surgery, I remember turning and seeing an old man lying in bed hooked up to a machine, either asleep, in a coma, or dead. The nurse quickly stood between us and said "Don't look at him. He's old, you're not. That won't be you I promise" None of my family could come back with me, so I had to say my goodbyes in the hall. The same nurse sat beside me and held my hand until all of the pre-op people came back. I remember seeing a cooler (filled with my blood type) sitting on my bed. When Dr. S. appeared I said "What is that for???" he just laughed and said "It's in case we want to have a picnic. People forget to bring their lunch sometimes" I remember going back to the room and getting hooked up to the machines. I remember the anesthiesologist saying "Pretend you're on a beach sipping a mai tai" and it was lights out. (I'm sure he didn't realize I was 19 and he was condoning underage drinking)

When I woke up, I felt like I'd been hit my a train. I had staples in my neck, an arterial line in my wrist, an external shunt in my head, a catheter in my (you know where THAT goes), and a central line running from my neck. The nurse asked me if she could get me anything and I'm pretty sure I asked her to kill me. They came to get me..for a CT scan! I had to have  CT scan right away to make sure I hadn't developed a blood clot. While I was getting hoisted over by about 5 medical personnel I noticed a bag with a pinkish fluid hanging by my bed. "What's that?" I feebly asked. A younger guy heard me and said "Do you really want to know??' when I told him yes he said "It's CSF draining from you" Oh my...

When they got me back to my room, my nurse came into see me. Since I'd been a patient for 10 days I had become familiar with the nursing staff, and glad to see a friendly face. "Please don't let my family stay in here long" I begged her. I was EXHAUSTED. She said "Don't worry hun. I don't mind being the bad guy"  I heard her explaining to my family that I was extremely tired and needed my sleep. She told them only to stay a minute.

That night was so long, but thankfully I could sleep from the painkillers. When the nurse saw that the doctor ordered Lortab she says "Oh good grief, that's what they give you when you have your wisdom teeth out. I'll get you something stronger." To this day, I'm here to tell you...2 lortab and 2 shots of morphine would make an elephant with ADD go to sleep. I do remember a very sweet maintenance woman coming in to check on me during the night, I made a lot of friends lol.

The first day is still a haze. I just know that my parents had to feed me and I slept between each visitng time. I progressed so much that by my 3rd day post-op they moved me to a regular room. I was sad to leave my ICU friends, but glad I was making progress. A few more days in a regular room and then I got to go home!

Since that October, I've had a VP shunt placement and three more cranieotomies. Each surgery got easier and it's been 4 years since my last one. Today at our appointment Dr. Sorenson said we'd hopefully be going to a check up every two years.

Kind of a funny thing..I've had the same anthesiology team for every brain surgery since the first one. Dr. Sorenson goes with me into the recovery room to make sure I know everything went ok. 

Truthfully, throughout this whole PBM process I've been terrified that I'd have brain problems again. In the past I've been to postpone surgery by taking a a steroid pack (which makes me gain 15 pounds and turn into the Hulk). Even if I do have to have brain surgery again, I know I have an awesome team of doctors behind me!

Wednesday, November 16, 2011

Famous again!

Just wanted to let everyone know that I am featured on The Fight Like A Girl Club's website. It's like I'm famous! It is pretty cool to see my story where everyone can see it :) Take a look and enjoy!

Monday, November 14, 2011

Happy Belated Blog-o-versy

Wow...yesterday marks the one year mark since I started this blog. I can't believe it! I was thinking about it on the way home from the gym. Thinking about how I almost didn't want to start the blog, and then was convinced that no one would ever read it. I just checked, and I have 7,972 hits. Pretty good for a small town southern girl ;)

I was also thinking how that in spite of my reservations about letting people see the vulnerable side of me, I'm so glad I've started the blog and kept it. I know of how many people have reached out to me, saying that I've helped them and they felt comforted by my words. I only hope that there are other people who have found some comfort and hope in my journey. Or at least people have realized that they are not crazy, or felt some solace in knowing that they are not alone in their craziness! HA HA

As for me..I'm waiting, waiting, waiting. I have my follow up PS appointment on December 7. Then if I'm given the all clear I'm sure I won't have another appointment until my pre-op. It makes me sad that I'll have to have the expanders that long. I HATE them! I'd take them out myself if I didn't think it could create a whole new mess of problems. It's hard to sleep, my right side hurts sometimes, and it's just all around uncomfortable.

It's weird...everyone treats me as if I'm normal. (surprise, surprise). It's like that no one KNOWS that I don't have boobs anymore. I kind of almost want to shout " I HAD A MASTECTOMY BEFORE I WAS 30 SO I DIDN'T HAVE BREAST CANCER" Ok maybe not that extreme. But I just feel like I have a secret.

It feels so weird that so much has happened this year, but time has flown so fast! I can't believe I'm going grocery shopping for Thanksgiving next week, my birthday is in two weeks, and Christmas is right the corner.

All I know that in this past year, I've lost a few parts, but gained some strength and courage in its place. And this time next year...I'll have two great foobs complete with fipples (hopefully lol)