Living with a brain tumor

My kids suggested I should start my blog with this background story.

It has been 18 months since receiving my diagnosis of a brain tumor in February ‘09 at the age of 44.  I’m still here and feel great. The only regret is that I did not keep a journal of my thoughts or feelings in this timeframe.  Didn’t want to dwell on it or feel sorry for myself, so I focused on taking care of my family and the research of how to best treat the tumor, if at all.    I vividly remember when the doctor told me about it on the phone.  It was quite a surreal moment. When I get bad news like that, my brain is much more focused and the emotions turn off.  I told Dr. Street that everything will be okay and was obviously trying to convince myself too.

My tumor is benign, was medium in size at diagnosis, and is called an acoustic neuroma or vestibular schwannoma.    It is a rare type of tumor, grows slow and is on the acoustic (hearing) nerve or vestibular (balance) nerve.   There is a not a lot of growing room where it is located, which has put a large dent/pressure on my brain stem, on the left side.  (My husband says my dented brain stem is very sexy by the way).   The tumor was found by happenstance from an MRI scan of my brain.   My breast cancer doctor recommended that I get an MRI to check out my pituitary gland since I had an elevated prolactin hormone level. (I should mention that I had early-stage breast cancer in 2006, diagnosed right before my 41st birthday.  That’s a different story and was easier to deal with than a brain tumor because there is a lot of precedence for breast cancer success.)  The MRI of my brain did show a tiny tumor…a pituitary microadenoma (3mm) and those are common; and then SURPRISE…hello there my other little friend, an acoustic neuroma was found too (2.2cm or 22mm).

I’m an optimistic person and have been labeled idealistic and even a romantic.  These personality traits have kept me moving forward, day by day.   The idealist in me didn’t want everyone to know I had a brain tumor.  Only people I dealt with on a daily basis knew about this.  I’m the go-to-person in my family (even the in-laws) and have always taken care of everyone else; didn’t really feel comfortable with people taking care of me.

I don’t like to say I’m fighting this or fighting some kind of battle.  This is not a battle, but is a fact that is part of my life.   I basically had three treatment options:  (1) surgery, (2) radiation to shrink it, or (3) wait and watch approach.  None of the experts recommended option 3 because of the tumor size and my relatively young age.  This type of tumor does grow slow, but eventually would be life-threatening if I didn’t do something based on the brain stem pressure.   Surgery scared the living daylights out of me because the tumor is at the base of my skull, odds for facial paralysis were high and I would lose my hearing 100%.   Also, I didn’t have any of the classic symptoms and having surgery would have created problems I wasn’t experiencing.

I met with 5 different experts, only one recommended surgery….of course that was my first ‘expert appointment’ and I was by myself.   I really didn’t hear half of what the doctor said after he pointed to the MRI scan that showed my tumor and how they’d cut into my head, and what kind of recovery would be required.  I wanted to run out of there screaming.  Instead I acted like everything was okay, I’m cool with this, and said I’d follow-up with him later.

Ten years ago, radiation would not have been a good option because the entire brain would have been radiated.  Newer medical technology saved the day…it is called targeted or stereotactic radiation and the most common type/brand is called the GammaKnife.  GammaKnife is specific to treating brain tumors up to 3cm in diameter, in one treatment session of a high-dose of radiation that would last about 4 hours.   I met with 2 hospitals that pushed the GammaKnife, one in Atlanta and one in Chicago.  I wasn’t too keen on my head being in a head-frame, really a vise (literally) and immobilized for 4 hours.

Another hospital in Atlanta recommended traditional radiation to the brain.  What the?  That option was marked off the list very quickly.  I eventually decided to be treated at the same place that found the tumor….using their technology called the CyberKnife.   The CyberKnife was developed for brain and spinal tumors, with radiation dosage administered by a robotic arm.  The Cyberknife doesn’t require a vise head-frame like the GammaKnife, but instead uses a mask over your face that keeps your head still while laying down.  The radiation is broken into smaller doses (mine was 3 days in a row that was 1.25 hours each time), but added up to the same total amount of radiation as the GammaKnife.  The CyberKnife technology was so new, the BlueCross BlueShield insurance through my husband’s work didn’t have a precedence of how much this would or should cost.   But they paid for it all.

I had a sign from God that same afternoon after the “Dr. Surgery” meeting and knew everything really was going to be okay.  The sky was rumbling, dark at 4pm and the clouds were almost black over our neighborhood.  The family was together in the Suburban filling up the beast with gas, and one of the boys pointed out at the sky….”Look at the light from heaven”…I replied “Yes, I see it.  It is a ray of light from heaven shining over our house.”  Everything else around was dark and gloomy.  We all saw it, all 4 of us, and it was actually beautiful.  To me that was THE sign that everything would be okay no matter what I decided.  The boys didn’t know about the brain tumor diagnosis yet though.

Almost 4 months after the diagnosis, the CyberKnife radiation was administered in June 2009 and I recovered faster than was expected.  The tumor is now 1.6cm in diameter one year after the radiation.  The hope is that it will continue to shrink and eventually die.  I still have the sexy brain stem dent though. The radiation, unfortunately, creates scar tissue and we aren’t sure if my brain stem will straighten out; my body has obviously compensated for this gradual change.  Protocol states I should have an MRI every 6 months for 2-3 years; but since I am doing so well and no side effects any more, the radiation oncologist doesn’t need to view another MRI for 18 months.  He seemed kind of relieved too.  That was a definite dancing-out-the-door moment.

This experience has changed my outlook on life, priorities and probably my personality to some degree.  I wouldn’t say I am more religious, but more spiritual and definitely more humbled.  I am also very thankful for all the prayers, my supportive friends and family, particularly my husband and our wonderful two sons.

Brigitte’s tumor – planning image for radiation

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