Some things I Have Learned in the in the 2 Years Since My Brain Surgery!

Physically speaking there is a huge “healing curve” between zero-to-one year and one-to-two, obviously.  Both the brain and the body are undergoing massive amounts of healing from the trauma that occurred in that first 12 months, both internally and externally.  To me, the changes that took place in the second year have been much more subtle, and really much less at all.  One thing many people may not realize, however, is that two years later, I still experience daily head pains because of the brain tumor and the brain surgery.  I don’t know if these pains will be with me for the rest of my life but in many ways they are bearable for the pure and simple reason that I know what the cause of that pain is.  At times the pains are beyond sharp and highly localized, and at other times, a migraine headache may take over my entire cranium.  I deal with it, I function, I take my meds and I get on with my day!  I rarely panic any more and know that if I need him, I have the world’s greatest neurologist who is always only a phone call, email or text message away.  I certainly do not welcome the pain, but there is some level of power, control in the fact that pains just remind me of where I have been and how far I have come.  I do, however, wonder from time to time if I have normal tolerance for pain and whether I can remember a day when I didn’t have a pain in the head!

On a lighter note, I can now achieve near perfect eyebrow symmetry, as I can lift my left eyebrow to match my right!  One of my doctors had initially predicted it would take at least a year, and up to 18 months to regain full function of my forehead on the left side, but it turned out to be closer to two years for me!  This, I always joked, was the least of my concerns and was actually more of a boon, as we all know of a “friend” who may actually pay a lot of money to suspend the motion of their faces artificially with the help of those friendly pharmaceuticals like botulinum toxin.  But this 47 year old is happy to actually be able to move her forehead again, so just a mundane, if not shallow, point for me to be able to note.

It follows metaphorically that much in the same way that my brain and body underwent a massive shock to their systems in the first 12 months following my surgery, my life has followed suit in the second 12 months, with shake-ups of external relationships, friendships and just a further filtering and honing of my life’s perspective in general.  For me this has all been in the most positive and uplifting of ways, or at least I always try to make sure that is the lesson I always take out of it in the end.  I live my life with a clean and honest feeling leaving no room for false pretexts after all is said and done.  Suffice it to say that clichés are true because they are.  Without getting too philosophical here because I cannot at this moment, but hope to someday, I have lost and gained but never live with regret because I know that I cannot and I will not; being a two-year brain tumor survivor allows me to say that.

When a brain tumor is removed it initially leaves a dark spot, a shadow on the MRI…this is the area where the tumor once was.   That area is medically referred to as Pneumocephalus: the presence of air or gas within the cranial cavity; usually associated with disruption of the skull: after head and facial trauma, tumors of the skull base, after neurosurgery…and rarely, spontaneously.  I was left with a void an area that was gradually filled in as I healed, but I also view it symbolically.  My outlook post-surgery has been unique.  I, of course, lost the tumor and it was replaced with a special strength and courage that very few can understand and it comes from a place deep within my spirit…or does it come from that place deep in the middle of my brain!

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Happy Crani-versary!

I know some say, “This is yesterday’s news.” And others ask, “Hasn’t she moved on yet?”  I also know (because I have experienced them) that some people will never understand my brain tumor journey.  Some relationships have grown stronger with me as a result of the past year and some, surprisingly, sadly, have been inextricably altered, if not lost forever.  To this I say, I am forever astonished at the power of a brain tumor.

Nonetheless, for me today is a jubilant milestone of EPIC proportions!  Today, I simply celebrate my one year Crani-versary!  One year to the day in which not only my head, but also my life was forever altered.  One year ago for six hours, at this very time, I lay peacefully numb to the fact that my skull was open and the intricacies of my brain were exposed and at the mercy of the hands of modern medicine.  Thankfully, on that day the foreign invader was successfully removed from its place of residence and, unlike Humpty Dumpty, I could be put back together again.

I am forever thankful to my neurosurgeon for all of this.  From the moment I awoke from surgery on January 28th to see my parents standing in front of me in the Neuro-ICU recovery at Memorial Sloan Kettering Cancer Center, I viewed everything in my life differently.  I will never forget the thrill at knowing I could hear them all, understand them and that they could understand me when I finally gathered enough strength to speak.  I could wiggle all of my fingers and toes.  I had done it!  The hardest part was behind me.  Yes, it has still been a long road of healing on so many numerous levels.   This should not come as a surprise if one considers for a moment the many billions of neurons the brain houses.  Healing from brain surgery is a process like none other.  It may or may not be harder or longer or more challenging to heal from, it is just different, and that has been the hardest part for some people (even myself at times!) to understand.

While fatigue still sneaks up on me, the zap and zings in my head occasionally still take me by surprise, and then there are those pesky short-term memory issues (which are probably and unfortunately more due to my age than to the surgery), these very minor things are, albeit counterintuitively, just little reminders of my strength and what I have overcome and for that, I actually love them and embrace them.  I am still as strong as I was before the surgery, but I have learned so much more than I could have ever imagined, more about myself and more about other people.  I cannot fully express right now the entirety of my healing journey, both physically and mentally, but as best I can say thankfulness marks this day!   Just as we celebrate our birthdays or wedding anniversaries, I want to mark this occasion with only a reflection of gratitude and thanks to God, of joy for living and of inner peace!

Footnote…so as not to get too wrapped up in the moment, it is soon back to reality and on to the next phase…a follow up brain MRI to monitor that there has still been no regrowth of the tumor.  The MRI is something I do every six months right now and is something I no longer feel anxiety over, the way I used to when they were monitoring the tumor in the years before the surgery.  As such, when I return to MSKCC for my visit in two weeks, I will not think of myself, I will instead offer all of my thoughts and prayers to those who live with brain tumors and especially to those who do not have the luxury that I have to know that regrowth is only a small possibility.  In my mind, they are the true warriors.

What I have learned in the six months since my brain surgery…

  1. Let go and let God.  Without a doubt, the most frightening thing about brain surgery is not being in control.  Our brain controls nearly everything that makes us who we are.  Aside from obvious vital life functions, our brain determines our personalities, our ability to communicate and interact with others and it is responsible for storing an entire life’s worth of memories.  The thought of being unable to tap into, even for a minute, any or all of those areas of my brain for whatever reason to me was the one fear I could not overcome.  It was what caused me more stress and anxiety leading up to my surgery than nearly everything else.  Very poignantly, when I initially told my younger son the news that I needed to have my brain tumor removed, it was his first concern as well.  “Mom, when you wake up from the surgery will you still be you?” he asked me.  The sad part was that I could not honestly answer his question.  I told my son of course I would still be “me.”  I emphasized to him that I had the best surgeon at the best hospital and that nothing bad would happen, but in my heart I was scared to death.  I needed to let it all go and place it in the hands of a higher power.  I had no choice.
  2. Always be kind to people because you do not know what they may be dealing with beneath the surface.  What many people did not know was that at the time I was told I needed brain surgery I had already been quietly living with my brain tumor for over two years.  It was something I had only shared with my closer friends and family members.  During those two years of anxious monitoring and “watch and wait,” I was forced to develop a certain level of acceptance and patience.  As a result, I gained genuine insight and a much deeper appreciation of the fact that many people are silently bearing their own personal crosses.
  3. Technology is awesome.  Obviously.  With that being said, so are the people who use that technology as are the people who develop and create that technology.  Everything from the imaging technologies that found the tumor and allowed for brain mapping the day before the surgery, to every last piece of equipment in the surgical suite, which by the way looked like a scene out of a science fiction movie, to each bit of technology that allowed the surgeon to flawlessly saw through my skull and separate the two halves of my brain all while avoiding my carotid artery and optic nerve, both just millimeters away, and then put it all back together again…all awesome…because without this awesome technology, and the people who make it and use it, I would be travelling a different path.
  4. Faith is one of the greatest gifts we can possess as human beings.  By faith, I don’t only mean religion, although faith for me does include my religion.  I believe we are born into this world with limitless faith but as we grow older, our faith sometimes dissipates as we feel pain and disappointment.  When we experience grief and loss we question why God lets bad things happen to good people and we lose faith.  I thank my parents for teaching me how to always have faith even in the most difficult of times and I will do my best to nourish and pass that same faith on to my children.  Faith keeps us from giving up and it simultaneously lifts us up with hope that things will get better.  On a more fundamental level, faith also allows us to have a basic trust in other human beings, like surgeons and anesthesiologists, just to name a couple.  Faith lets us literally place our lives in someone else’s hands.  I have never relied so much upon my faith as I did in the weeks and days leading up to the morning of January 28th when I laid myself down on the surgical table for a six hour brain surgery.  I am so thankful that I have such deep faith because without it, I would have crumbled under the pressure.
  5. People are fundamentally good and kind.  Of course I mean the heroes and rock stars of the medical profession who save lives, but I’m also talking about all the “regular” people in our lives that show compassion toward others each and every day, simply put:  friends, family, and the members of our communities.  The outpouring of love, support and prayers my family and I received on so many levels, especially leading up to and immediately following my surgery, was more than I could have ever imagined and I will never forget it.  In fact I will always remember it and forever do my best to pay it forward.  Bad situations can always be made just a little bit better with the kind support, reassurance and prayers of good people who care.
  6. Some people are surprisingly unkind to those who are facing adversity.  Along with the very kind, the last six months have also revealed the decidedly narcissistic.  These are the individuals who could have chosen to be supportive to me or my children during what was easily one of the most stressful ordeals we had ever been through as a family, but who instead chose to not reach out to any of us.  Perhaps they couldn’t because it was not all about them?  I may never know, but I will not expound upon this point further since there are thankfully so very few people who fall into this unfortunate category and, because their behavior probably had less to do with me or my family than with their own unhappiness in life.  Still, even with unkind acts there is a lesson to be learned.  In the beautiful words of Blessed Mother Teresa, “People are often unreasonable, illogical and self-centered. Forgive them anyway…Because in the final analysis, all of this is between you and God…It was never between you and them anyway.”  Enough said.
  7. Words matter, more than most people know.  I am forever grateful to each person who took a few minutes to send me a simple message (voicemail, email, text or Facebook), brief note, get well card or just let me know in some small way that they were thinking about me.  If you are ever in the unfortunate situation of finding out that a friend or spouse of a friend is going through a serious surgery, treatment or illness and you are unsure whether or not you should reach out to him or her, please know that you will never regret it if you do!  Trust me, you have never felt as alone as when you are by yourself in a loud, clanging MRI tube trying to remain motionless while your head is strapped in a cage…at times like that, you look deep within yourself to find strength and part of that strength comes from knowing that others care and are thinking about you.
  8. Sometimes an eyelid twitch is just an eyelid twitch, or is it?  My whole journey with this brain tumor started several years ago with an eyelid twitch.  A simple, little twitch, it was nothing too terrible.  In fact, it was just a little flutter of my upper left eyelid, barely noticeable to most people.  Still, it had been nagging at me on and off for over two years and, as such, I would casually mention it to various doctors, each time getting the standard response:  fatigue, stress, too much caffeine, or any combination of the three.  Even after the tumor was discovered, the different neurosurgeons I had consulted with always maintained that the left eyelid twitch was unrelated to the tumor, even though the tumor was physically located deep behind my left eye, less than 1 cm from my left optic nerve.  As I travelled a seemingly endless journey that began with an eyelid twitch, then led to a misread MRI (initially missing the tumor), then to my brain tumor diagnosis another year later along with the nerve wracking neurological consultations, then to living with the tumor and its symptoms for two long years, and finally to my brain surgery this year, I always knew that this little eyelid twitch was so much more.  This little twitch had actually been my guardian angel guiding me, tapping me on the shoulder saying, “…take note, pay attention, please don’t give up until you get the answer you need!”
  9. So much of how our lives unfold is nothing more than fate.  As human beings, we cannot help ourselves but to let our minds occasionally wander into the realm of how our lives would have been or could have been different if only something hadn’t happened, or maybe if only something had happened.  Unfortunately, I had already learned the difficult lesson twenty-five years ago, after my brother had been hit by a car and killed, that indulging in this sort of “what if” thinking was a futile exercise.  When it comes to unfair things in life, we get what we get.  If nothing else when I received my diagnosis, I already had the wisdom to know not to ask “why me.”  In fact, one of the first things I thought about instead was how grateful I was to God that it was me who had the brain tumor and not one of my children.  I knew there was meaning in God’s plan.  And while a brain tumor was not something I had ever expected to be diagnosed with in my lifetime (…well, except for a brief moment in the seventh grade after reading Death Be Not Proud by John Gunther), I have always been incredibly grateful, to say the least, that it was not worse.
  10. As much as we sometimes yearn for our lives to stay the same, they do not.  At the very best, we are blessed to grow older each day with the people we love.  We are equally blessed if we have the ability to grow wiser from our past experiences, not just the good ones but also the bad.  I have learned that even as our lives evolve and unfold in ways we could have never imagined, in the end we must always find peace both within ourselves and with our lives.  I will forever have an eight inch scar along my hairline from the center of my head down to the middle of my ear, a variety of small, titanium plates and screws under my scalp, a dent in my left temple, and a left eyebrow that to this day will just barely move.  My tolerance for headaches is now beyond human proportions.  I will be monitored with MRI scans for the rest of my life since there is a small chance the tumor could come back.  Things are different now.  Still, none of this is a big deal as long as my brain remains tumor free.  Most people will never know just by looking at me that I ever even had a brain tumor.  But whether I look like I had a brain tumor or not (what does a person with a brain tumor look like anyway?), one thing for certain is that I am truly blessed.  I often think back to my son’s question as to whether I would still be “me” after my brain surgery and how I was not able to give him an honest answer at the time.  I now know with full certitude the answer to his question.  It is an unequivocal, “No.”  As it turns out, I am not and never will be the same person as I was before this experience.  I am forever changed because of my new perspective, my deepened empathy, my renewed faith, and my extreme gratitude for life.

Words to Live By