Wanna see Timmy?

I realized I never posted the pictures of my original MRI. So here are a few snapshots of what Timmy looks like.

Timmy is that bright white spot with lines by it

Well there he is. I must say my drawing are quite accurate.

Alyssa

Doctor's Appointment

Today I had my first appointment with my new neurosurgeon, Dr. Andrew Parsa, at UCSF. First of all the office is BEAUTIFUL with an amazing view of the city (I know this has nothing to do with its ability to care for my brain, but it was a plus).

This was the entrance to the office. I did not know that I was going somewhere specifically for brain tumors. There were more people in the waiting room than I expected, which made me think "How often do brain tumors occur?" Well, apparently they aren't as rare of a diagnosis as I had thought.

This is the view from the waiting room. It's a great view of Golden Gate bridge and the city. 

The entire staff was super friendly and took their time to talk to me and make sure I was comfortable and had all of my questions answered. We especially liked the nurse practitioner who was thorough, knowledgeable, and friendly.

Anyway to the point. We met with my neurosurgeon and he had what I consider to be good news. So he said that he is pretty certain (90% sure) that the tumor I have is called a pineocytoma, which is a benign slowly growing tumor that can be cured by surgically removing it. Great news my doctor specializes in removing brain tumors and removes these types around 5-10 times a year. Now the doctor said there is a small chance (obviously 10%) that it is something else and there are two ways to find that out. First we are going to do a more in depth MRI the week before surgery to make sure it's still there, looks the same, and doesn't appear to be a cyst. Then after they remove it they will run tests to see if it is malignant and if it is we will figure out what to do from there. 

We are planning on having the surgery mid-late February. The surgery will consist of me sitting up (asleep) and the neurosurgeon removing part of my skull in the back of my head to access the third ventricle (or the fourth I can't remember) which will lead them to Timmy. 

ventricles

AND THEN THEY SHALL CUT HIM OUT WITH THE VENGEANCE OF A THOUSAND FIRES!!!

The neurosurgeon said I will be immediately transferred to the ICU and then after a night there I will spend around 3 nights in the hospital. The whole recovery time should be about a month total and after that I will be back to myself!

Which means....I may not have to wait as long to be an OT as I had previously thought! 

The neurosurgeon seemed really awesome and told me I need to make sure I de-stress and focus on preparing for my registration exam.

So good news? Yeah it's major surgery, but it's not months of radiation, possible radiation related side affects, and delaying my chance of my dream job. I'm calling it good news.

Alyssa

Transitioning

So it's been a while since I have posted, but everything is more of the same. Timmy is still here and I am transitioning to my life in San Francisco where I will be seeing my new neurosurgeon on the 10th. So here is a recap of what's been going on:

• I finished my internship in Austin (and passed!) then promptly gradumacated. One of my internship supervisors told me he was impressed at how well I handled my medical stress along with the stress of being a student in an internship. That made me feel proud of myself that I was able to finish and do something most people would not have been able to emotionally handle. 

• I got to see my dog again and had a splendid Christmas with family 

• I began and finished a road trip with my boyfriend from Tulsa, Oklahoma to my new home in Mountain View, California. 

I am very happy to be back in the San Francisco area, and things have seemed to become a bit easier. I'm not as angry and bitter about Timmy the Tumor, although I still harbor some resentment. I do forget  about it sometimes until I have a conversation with someone about my future plans. I've gotten used to telling people that I have not found a job and I don't know when I will take my occupational therapy registration test because I have to wait until the doctor tells us what the plan is. I've accepted that the next few months are going to suck, but hey I live in a beautiful area with a great support system. 

Graduation was hard for me. It started off emotional when I saw my grandparents and my grandfather teared up when he talked to me. I had a breakdown in the parking lot after that and freaked my dad out. It was hard to see my grandfather, who has enough health issues of his own to worry about, be so emotionally affected by my health issues. Graduation itself was just awkward. I had no idea who knew about my situation and who didn't so when people said "Hey how is everything?" I didn't know if they meant tumor stuff or just generally "Hey what's up?". It went by too quickly too. I didn't get to catch up hardly with anyone, because the large graduation crowd seemed to separate everyone. I did have some good touching encounters with classmates that made me feel loved and cared for. 

One thing I've realized through all of this is I really miss my maternal grandfather. He had three different types of cancer and numerous other medical conditions and handled it all with strength, optimism, and courage. I had mentioned to him before, and spoke about it again at his funeral, that he was a mentor to me and taught me how to be truly strong. I'd like to have him here with me now. He would make an awesome guide through all of this. 

Right now I am sitting on the couch next to my amazing, supportive, loving, etc., etc., etc. boyfriend who takes the absolute best care of me and I'm tearing up from typing about my grandfather. I don't want to be too much of an emotional cry baby. I cried so much on the road trip. Transitions are hard for me.  That's ok this post is long enough.

Alyssa

Introducing Timmy

My name is Alyssa and I have a brain tumor at the base of my pineal gland.

In October I saw a doctor about an old shoulder injury and they decided it was just a stretched nerve and they gave me a pain relief medication.

Well a few days later I was driving to my internship at a rehab hospital (which I am four days away from finishing) and the right side of my face went numb. I assumed it was either due to the medication or another nerve injury. A nurse at work checked to make sure I wasn't having a stroke and I wasn't, but when i told my doctor she sent me to the emergency room. The doctors there couldn't find an explanation and my original doctor decided to go ahead and have an MRI of my head done just in case.

I had the MRI on a Monday and went to get the results on a Wednesday. I waited in the office for quite sometime until a tech came in and handed me the results and told me to look over them and think of any questions while I waited for the doctor. I glanced down and my eyes fell upon the worst phrase I could imagine, "a mass like lesion at the base of the pineal gland". I have heard the phrase, "my life flashed before my eyes" a million times, and at that moment I experienced it. My childhood, college, my family, meeting my boyfriend, my dog Andy, everything just hit me and I burst into tears.

It's been four weeks since that moment and I have had an appointment with a neurosurgeon who explained that there was a higher than average chance that it was something malignant rather than benign, and either way I will most likely need radiation. I had a lumbar puncture (which was the worst imaginable pain) which came back negative for germinoma markers, which by the way means NOTHING, because it can still be cancer and the only way they can figure that out is by drilling a hole in my head. Please don't say congratulations on the negative results it means nothing to me.

At this point I am waiting to move to San Francisco to be with my boyfriend (which was a plan before this whole mess) where I will be seeing a neurosurgeon at UCSF to plan my biopsy. Lately I have been so angry. I was planning on graduating this Saturday, studying for my registration exam, passing that test, and getting a full time dream job as an occupational therapist. Nope not anymore! For a while it looked like I wouldn't be able to take the test in time, now that thankfully looks like a possibility. However starting a new job is looking dimmer and dimmer. I'm watching all of my OT friends get interviews and be excited about their new career and all I can think is when they start I will probably be starting radiation.

I know I know I'm totally throwing myself a pity party, but at this moment I am so angry and so upset with everything I can't help it.

I named my tumor timmy, and I freaking hate him more than anything. He ruined what I was looking forward to the most, being a full time occupational therapist.

I hate you Timmy.

Screw you