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Lessons Learned from a Brain Tumor
by Karen Perry-Weinstat, July 2013

In April 2012 I was as my desk working after having gone for an MRI due to chronic headaches I was experiencing.  It was the neurologist.  When he told me the test revealed that I had a large brain tumor, I laughed.  My first thought was, how ridiculous!  I don’t have time for this!  I’d recently been through two other major ordeals.  This was just too much!

I laughed all the way to his office the next morning for a pre-hours consultation accompanied by my husband.  Two days later, after the herculean efforts and incredible connections of my sister landed me an appointment with the top neurosurgeon for that type of tumor.  Two days after that, I had emergency surgery to relieve pressure in my brain due to blockage caused by the tumor.  Three weeks later, I submitted to an 8 hour procedure to remove the tumor, followed by weeks of in-patient rehab and home-based physical therapy tapering to office based physical therapy. 

The tumor, THANKFULLY, was benign.  It wasn’t exactly the type of tumor they’d diagnosed before the surgery.  My hospitalization and recovery were painful, humbling and slow.  NEVER be a patient unless it’s unavoidable! 

About 11 weeks post-surgery, for no apparent reason, my body stopped producing red blood cells.  So anemic that I fell over, banged my head and couldn’t move, I was taken by ambulance to the ER where they literally saved my life with emergency transfusions.  We think the episode was caused by surgical medication, but we were never really sure.  Five days later, I was released from the hospital to resume my tumor recovery.

Now, I am not a Pollyanna kind of person.  While my emotions run deep, I tend to present a formidable exterior that can be off-putting to some.  From previous life challenges, I’ve already been forced to learn, grow and to toughen up.  I’ve gone through many programs, workshops and seminars and have read many books to reinforce my resolve that life isn’t about what happens to you; it’s about who you are no matter what happens. 

That said, from day one of the diagnosis, I tackled the problem head-on.  I went to the best surgeon at the best hospital in a top city where they were experienced with complicated surgeries.  I put my affairs in order and bravely donned my hospital gown and ridiculous shower-cap like headgear.  I did not focus on what was beyond my control.  I knew that after the surgery, it would be up to me to make the most of it, regardless what “it” was.  I firmly believed that I had too much at stake to expect or accept anything other than a full recovery.  Of course, I had no idea of whether or not this was reasonable.  But, being reasonable is not a good strategy when facing the unknown.  That type of thinking creates a smaller range of possibilities than does being unreasonable, or determined to achieve the outcome you desire.  My desire was to get my life back.  I love my life.  I’ve worked hard to get wherever it is that I am.  I was not willing to let that go.

My 25 year old daughter tells me that I was obnoxious in the in-patient rehab when they cheered me on for small accomplishments like putting a peg in a color-coded pegboard hole.  When I made it up and down the therapeutic stairs (a set of 6 steps with a handrail and traction flooring), they applauded.  I grimaced.  If that was “good,” I was screwed!  No, while I was pleased to note such accomplishments, they were just steps back to myself.  I made it clear to the therapists that I am a high functioning, active business owner and full-tilt person.  “Good” to me would be taking the NYC subway or hustling to and from meetings.  I wasn’t there to rest… I asked them to challenge me and I worked very hard to master each challenge.  My daughter said, “Do you think that they’ve never before had a high functioning person” in the neurological rehab unit of a major NYC hospital?  I responded… “I’m sure they have.  But I just want them to know that I have high expectations – for them and for me.”  How else would I be sure that I got the most from the rehab experience?

My story goes on and it’s now more than a year since my diagnosis.  I’m almost all the way back.  I do have some permanent nerve damage and pain on my right side.  This is under treatment and I live on medication that relieves it to some degree.  I’d rate my recovery at a90-95% to-date.  I cannot yet do everything I could before the surgery, but I remain determined. 

Throughout the year people showed up for me in the most moving of ways. 

• My daughter dropped everything in her complicated life, returned to NY and attended to my every need in the hospital and later too.  She is me and I am she.  Our bond is resolute.
• My husband of 3+ years was by my side and a strong shoulder to lean on both around the surgery and every day for the past year plus.  I am so fortunate to have found him the second time around!
• My recently widowed 80 year old father moved from PA to NY to spend nearly three months as my caregiver, meal preparer and driver while I was incapacitated.  He is a unique man whose commitment to family is unparalleled.
• My sisters were there both physically and emotionally despite their busy lives.  I have the best sisters a woman could have.
• My friends visited, brought food, comfort and made me laugh both initially and in the longer haul.  I am moved by their loyalty.
• My staff resolved to keep our small business afloat and keep me insulated from any concerns.  I am so touched and proud of them.

My list goes on to doctors, therapists, colleagues, extended family and more.  I learned lessons of patience, humility, mortality, determination, loyalty, resolve, and so much more.

Through it all, however, I came through clear on who I am and how I choose to be.  Believe me, I had moments when I complained, cried, was grouchy and impatient.  But through it all, the unassailable “me” remained intact.  That, perhaps, has been my proudest accomplishment.