M-R-I'm so relieved!

I am so relieved because my September MRI looked great! No regrowth! That really says it all. I am also beginning to look forward to November 1st when I can begin to drive again. We've been super busy with the beginning of school. I am co-chair for the recycling committee. (My "so-called" friend got me to do it. Busy, busy, busy! I guess that's good!) I have an appointment in October with my neurologist and then another MRI in November. My surgeon and my oncologist will follow up that one. Apparently they'll discuss my brain at the "Tumor Board" before filling me in!

Gemistocytic Astrocytoma

Samples from my "Alien" showed it to be an astrocytoma with gemistocytic properties. Treatment for this type of tumor is a "gray area," said Dr. Sajeel Chowdhary, MD, Neuro-Oncology Program, H. Lee Moffitt Cancer Center. (I'm NOT calling him MY Neuro-Oncologist yet!) As anticipated, this type of tumor is WHO Grade II (Grade I is the most benign, Grade III and IV are considered malignant.) So this really is good news! The not-so -good news is that tumors with gemistocytes can have the tendency to regrow at a quicker rate than those without. I've chosen to take the watch and wait approach rather than the more aggressive routes of chemo and radiation. The radiation-oncologist at Moffitt said that this route is what he would recommend for his wife or daughter, so I'm going that way too. The fact that he is a radiation specialist (who certainly believes in what he does) helps me to feel comfortable that I'm doing what's best. So for now, we wait. We'll watch it in September with an MRI.

Million Dollar Question

The answer is...YES, I am seizure free! I haven't had one since before the surgery. WHEW!!!

Did I mention...

...Jeff??? He's so awesome! He has been amazing through all of this, and I want everyone to know it! I can't even find the words to express my feelings on this one. (Shocking, right?) That's it...all I have to say tonight!

I'm Hooooome!!!

Whew! What a ride! I'll fill you in later. Thanks for everything, I'm definitely 'feelin' the love!" I know that the love, prayers, positive energy, and well wishes from family and friends have helped me find the strength within myself to get this far. I genuinely felt you there with me, and I kept coming back to it. Thank you and please keep it coming as I continue to recover at home! Right now it's more darvocet and sleepy time for me.
Much love,
Emily

Coasting Toward Home

Emily has been released from the hospital and will be home tomorrow sometime. So, I'm guessing she'll take control of the blog again. I'm not sure I can add much more at this point, other than it's times like these that make you realize what an incredible network of family and friends (extended family) we have. Much Thanks and Love to all of you!!

Recovery in Progress

Emily was released from ICU today at 11am. All monitoring devices were removed with the transfer, and she is no longer receiving IV fluids. Her new nurse told her that if she didn't start eating, her pain meds would be withheld indefinitely. Guess what? She started eating! As of now the whole thing has been text book must have someting to do with the patient. Hoping to have her home again in a day or two (simply amaaazing!).

Good News from the GreenWELLs

The surgery is complete - just 3 hours! The surgeon said everything went as planned and as expected. After 2 hours in recovery, we visited with Emily in ICU. She was cracking jokes and complaining about a headache and even giving instructions for the children. We expect her to be in ICU for up to 2 days, and then she will be transferred to a regular room. The doctors and nurses are very pleased with her progress stating that her good health has been to her advantage. Jeff and the boys are doing well with lots of care from friends. We are so thankful for your thoughts and prayers!

The Big Decision

After much (very much) deliberation, numerous conversations (thanks for listening and for your input), lots of reading, and a dash of angst and anguish, I have decided to proceed with the surgery. It must have taken 10 days to get the surgery scheduled after my original phone message saying that I wanted to schedule. Those days were basically hell. On March 31st, I got the call, and now I know that May 1st is "The Day." The surgery will be performed at Tampa General Hospital by Dr. Vale.

Bottom line...I want it out! I want the seizures to stop, and I want to quit wondering if each simple partial seizure will be followed by a grand mal. I want to be able to drive and regain my independence. I want this done before the slow growing tumor becomes a fast growing one and the surgery becomes more difficult and likely less effective. I don't want to continue on anti-seizure medications (which aren't working) for 15 years before deciding to have surgery. So...I am going to have brain surgery. Yikes!! I mean really??? Is this my life??? Part of me can't believe it, and part of me believes what I always tell my son (and previously my students) "Got a problem...Get a plan." So my plan is brain surgery.

In the meantime, I'm enjoying every moment! Bryce and I are taking lots of long strolls. He's taking steps here and there.

(I'll add a picture when I figure that out.)

Nicholas is playing soccer, enjoying Kindergarten, and reading!

Jeff and I finally have a babysitter and have been getting out for date nights and nights out with friends.


(I'll add a picture when I figure that out.)

As a family, we're heading to the Smoky Mountains for Spring break next week. One of the first trips Jeff and I took together was backpacking in the Smokies. Despite the unexpected snow, unreached destinations, and crazy altitude changes (up and up and up), I loved it, and I knew that "we" were the real deal! This time, we'll share that special place with the kids. Don't worry, we'll be car camping and day hiking.

Like I said before, I'm enjoying every moment, and I hope you do the same!

Dr. Fernando Vale

I first met with Dr. Fernando Vale on Wednesday, March 12, 2008. He is a neuro surgeon, and guess what...he recommended surgery. By this time, I was ready for the recommendation and was able to think (relatively) clearly. We discussed the procedures and expected outcomes. Dr. Vale said that with the surgery (craniotomy), I would have a 70% chance of becoming seizure free. On a scale of 1-10, the difficulty of my resection would be a 5. The main concern is the large amount of blood vessels located near my tumor (Sylvian fissure area.) He said that the main risk factors include:

• bleeding
• infection
• damage to blood vessels leading to stroke
• "crooked" face (Luckily, the face gets bilateral representation. Many bodily functions originate in the opposite side of the brain from which they occur. The face receives signals from both sides of the brain, so it's not like the face would be totally paralyzed.)

Amazingly, he said that the possibilty of any of these complications would be about 3%. Sounds quite safe, don't you think??? Dr. Vale had more good news. He said that he would not recommend chemotherapy or radiation because the tumor has been slow growing and because the adverse effects of those treatments outweigh the benefits in my particular situation.

Dr. Vale did a live webcast of brain surgery. It is not the exact type that I will need, but it does let you see Dr. Vale and what actually happens during this type of operation. Check it out here. I will warn you that this is a very graphic video. Through our consultation, his credentials, the recommendation from Dr. Tatum, and his skill portrayed in the webcast, I do believe he is one of the best doctors to conduct this type of surgery.

Dr. Tatum

The first time that I had an appointment with Dr. Tatum was about two weeks after Thanksgiving. He based his evaluation on his examination, what I told him, and the written reports from the hospital. He treated me for the Arachnoid cyst. It measured 3.42cm x 2.79cm. Considering the fact that I was still having the small seizures, sensory type on a daily basis, he prescribed another anti-seizure medication (lamictal) to take along with the dilantin. He diagnosed me with epilepsy. I was surprised to learn that epilepsy is not a disease , but simply recurring seizures that can be the result of different things. He told me to come back for a follow up appointment in 6 weeks and to bring the films from the hospital.

When I went back on January 15, six weeks later, I took the MRI films from the hospital. After seeing the pictures of the mass, Dr. Tatum said that he was not convinced it was a cyst. An Arachnoid cyst has smooth edges, and this mass had an area that was not well defined. Arachnoid cysts are also generally asymptomatic. I was definitely symptomatic. He advised that I make an appointment to see "a friend of his," Dr. Fernando Vale, a neurosurgeon. Dr Tatum ordered another MRI (which takes pictures of the brain) and a spectroscopy (which tells about the chemical make-up of the brain.) I was able to get those tests done the following Thursday (1/24). I requested that the diagnostic center send a written copy to me. That report arrived on Saturday, January 26. The following are direct quotes from my reports:

1. MRI shows low-grade intra-axial glial neoplasm in the right operculum.

2. MR spectroscopy study supports a diagnosis of low-grade glioma in the right frontotemporal opercular region.


Well after a few minutes on the internet, I knew that this was a tumor. Of course, I read and read about brain tumors for way too long while wiping away my tears. If you want to understand the terms above, this website from Musella Foundation For BrainTumor Research Information offers good explanations. I find the old version easier to read, but the current version has some useful info too.

On Monday morning, I called Dr. Tatum's office. He was out of the office. UGH!! He finally called me at home around 6:30 pm. (Impressive, I think.) He managed to ease my fears, and told me that the tumor had not increased in size since the MRI in the hospital, and we discussed the fact that the small seizures were continuing daily. He increased my lamictal and told me to check in with his nurse to let them know how the new dosage was working. After a week, the seizures were still happening. I felt like they were shorter in duration and intensity, but still occurring daily.

Over the next five weeks or so, I continued to check in and increase meds as our goal was (and still is) to become seizure free. (Seven weeks after the grand mal, I was on 100mg of lamictal twice a day. At this point (3/21), I am taking 350mg twice daily. We've been increasing in increments of about 100mg each time, and the daily simple complex seizures persist.

During my telephone conversations with Dr. Tatum he said a couple of things that helped prepare me for what was to come. He first told me that "lesional" cases (meaning that a tumor or cyst is causing seizures rather than seizures that happen without a mass) can be hard to treat with medication. He also said, during a call about increasing medication, that he did not want to put me into a coma with medication when medication might not work to control the seizures anyway. ( I do think that he was speaking figuratively and meant that he didn't want to over medicate me into a fog.) At this point, I really am feeling like, "What's the point??" I might as well quit the anti-seizure medication if it's not going to work anyway. I do feel some comfort as I go to bed each night and wonder if I'll awaken having another "big one."

I saw Dr. Tatum again on Tuesday, March 18. On Wednesday, I started a third anti-seizure medication, Keppra. I've been taking it for three days now, and I've noticed no change in the small seizures. I guess this is a drug cocktail-- my first cocktail since before Thanksgiving. Unfortunately, I can't even be the designated driver because I still can't drive. (Sorry friends!)

University Community Hospital

Basically, the hospital staff did lots of tests on me (CT scan, MRI, EEG). They also asked if this was the first seizure I'd ever had. At the same time, Jeff and I replied "Yes," but I added that I had been having these weird "anxiety attacks" for the previous two and a half years that sometimes woke me up at night. I had seen my PCP multiple times because I was having strange sensations in my chest and neck. I had a full physical exam including a stress test on the treadmill and complete blood analysis. My PCP told me that it was anxiety and that I must be experiencing depression, so he prescribed Wellbutrin (an anti-depressant), then Buspar (another anti-depressant). After no improvement, he sent me to a Psychiatrist who prescribed Zoloft!!!(How depressing!!!). Seriously though, I've never been one to get too uptight about life. "Anxiety attacks" never really made much sense to me (I guess I should have listened to my inner voice.) At that point, I just said forget it, I am not taking any more drugs. I'll just deal with the "anxiety" myself. The docs at the hospital told me that those "anxiety attacks" were most likely simple partial seizures (affecting me like the sensory ones described in the hyperlink.) In retrospect, I think that during that time, I tried to justify the "attacks" but wondered why the tiniest thing could send me spinning. I tried not to make a big deal out of them and actually was embarrassed and tried to hide them. Sometimes I massaged my left hand. Often I excused myself from the room. I always tried to focus on my breathing. The "spells" would generally pass in about 30 seconds (maybe a little longer if it was a bad one.)

The doctors determined that I had an Arachnoid cyst. They said that it looked like it was in a fold, and that it may have been there since birth. They determined that the combination of stress, lack of sleep, and perhaps post-partum hormones all converged to trigger the Grand mal seizure. So they sent me home with a prescription for anti-seizure medication (Dilantin), informed me of the Florida law that states one cannot drive for six months after a seizure, and told me to make an appointment to see a neurologist. Fortunately, I had the wherewithal to ask my nurse to recommend the best neurologist she knew. She recommended Dr. William O. Tatum . The only other person I asked about neurologists also recommended Dr. Tatum, so I made an appointment to see him.

Thanksgiving

The day before Thanksgiving 2007~~ I was ready for the feast! I prepared my traditional casseroles and secret family recipes, cleaned the house, set the table, and charted out the cook times for everything. I wanted to be all set when I woke up on Thursday morning. Somehow, accomplishing all the things I just listed in one simple sentence took me until 2:00 am. That's not totally out of character for me, as I've always been a night owl--finding inspiration in the wee hours of the morning. Anyway, around 3:30 am I remember being in the middle of the bedroom thinking, "I can't breathe, and I can't speak!" I must have fallen to my knees because I remember thinking, "I have to wake Jeff up," so I banged on the floor with my hand. That's the last thing I remember until I was in the rescue squad being quizzed by the EMS guy. He asked me if I knew what holiday it was (big hint, right?), and I didn't know. I do remember feeling stumped. He also asked me if I was always so cheerful! ha! ha! Back to the story, well fortunately, Jeff did wake up, and he found me convulsing on the floor. Afterwards I was rigid and unresponsive. Immediately, he called 911. When the EMS people arrived I was trying to get up, but Jeff wanted me to stay put. After they talked to us (I was out of it), they put me on a gurney, took me to the vehicle, and finally drove to the ER at the hospital. Apparently, this was a Grand mal seizure.

Hello

Well, what can I say?? First of all, thank you for visiting my blog. I (we) have been going through a lot recently, and we haven't been keeping in touch as much as we would like. Oh wait, we've never been very good at keeping in touch, but we do hold all of our family and friends close to our hearts no matter how far away you are or how long it's been since we had a chance to hang out. This blog is overdue. I know many of you have been wondering what is happening with my health (so have we). It is my intention to keep you up to date wth the situation as things progress. I would love to know you've visited the blog, so type away in the comments section (if you want to.) If you have any questions, please ask. I'm certain to leave out some important stuff, or you might have the next great question for my doctors.