In late 2005 it was yet another glass that had fallen out of my hands landing shattered on the kitchen counter that got me thinking.
It wasn’t the first glass, plate or thing to fall out of my hands, it wasn’t the first time I’d felt like I didn’t have the best fine motor skills. I was a mother of a two year and 5 month old boys, running on less than desirable sleep, running a business and running a household… I must just be tired. I was a healthy, fit woman. Yet, deep in the recesses of my body, something told me that something was not right.
I had noticed changes, ever slight as they may have been, more forgetfulness, difficulty feeling the thread when I was sewing, dropping things I swore I had a good grasp on, difficulty getting words out, the signs were there that something was off, but I had so easily tossed each event to the side. Nothing was happening all at once and each event seemed singular and isolated; at least until that day when I stood looking at the broken glass on the kitchen counter.
It all changed that day; my mind said there was something wrong while my heart said it could not be so.
My friend Amy had lost her father to cancer in college and not many years after this tragic loss, her mother was diagnosed with ALS and had passed away in the past year. It had been a conversation we had about her mom and her diagnosis that scared the crap out of me. Amy had referenced how her mom had gone to the Dr. with numbness in her hands and that was how her ALS was discovered. My personality is very levelheaded; I really never over-react to anything and never jump to conclusions, but it was the nagging confusion as to why for the past 5 months things had started to change and my conversation with Amy about her mom that made me pick up the phone and make an appointment. The urgency in the nurses voice and my next day appointment was alarm #1.
I had probably seen my Dr. a handful of times in the years I had lived in Charlotte, NC. Other than the occasional bad sinus infection, etc., I preferred the ease of the walk-in clinic rather than waiting for an appointment. My primary Dr. quickly assured me that I did not have ALS with numerous detailed medical explanations. We went through the standard Neurological tests; all of which showed no abnormalities… good news! Yet, ever the thorough Dr. he suggested that we do an MRI to cover all our bases and made a referral to a Neurologist to rule anything out and give me peace of mind. All my fears were gone and I felt great. All would be fine… just check this off the list and move along with life.
Paul and I met with the Neurologist and she again repeated all the Neurological tests and again and all looked fine. She ordered the MRI explaining that in the majority of cases, it is pretty black and white. You either find something or not, but that sometimes you find little things that fall into the grey area that can not be explained or diagnosed definitively. Yeah, yeah, I thought, this was nothing, just an exercise in keeping me sane and checking off a box that said I was healthy and fine. So off I went in a few days into the big scary tube for about 45 minutes, gleefully knocked out with valium for my claustrophobia.
Our follow up appointment a few days later sent off alarm #2.
My MRI had left us in what she determined to be the grey area. There was a small lesion in my right temporal lobe. It is rather amazing how quickly the news flew so easily out of her mouth while my brain stopped processing and started playing catch up. I lost track of all the really long Neurological terms and words she was using and I kept coming back with “is it a tumor?” to which she responded that she really didn’t think so. She didn’t appear to be alarmed and hadn’t told us anything I understood to be alarming, so we left feeling like maybe it wasn’t all that abnormal to have a small lesion on your brain.
I hadn’t failed the tests, was healthy and she had said that maybe some random virus had settled in my head, or maybe the concussion I had when I was 12 left me with a small area of damage… it all seemed so simple. We had another MRI scheduled for three months later… no change.
I was tremendously confused, yet not worried. No definitive alarms had been rung, so that seemed good, but the unknown was odd and my gut kept telling me that there had to be a better explanation. After the three month follow up MRI, Paul had accepted a new position with Wachovia in Atlanta. We were moving and I was left to arrange the next MRI on my own in Atlanta. I got copies of my records and off we moved to our new home in August 2006.
I really did have the best of intentions to follow up in the appropriate time line and find a new primary care Dr. and get the MRI scheduled around December 2006, but life happened and so did distractions. I wasn’t worried about this “lesion” and hadn’t been given a reason to be worried. So follow up simply got placed on the back burner and we settled into our new life, new house, and got the kids adjusted to their new pre-school and lives.
In late May 2007, I finally got my shit together and called my primary Dr. and asked if he had received my records and if he thought that I should have the follow up MRI. He promptly responded with a yes, ordered the MRI and called the day after with the results. Nothing had changed from the previous MRI based upon the Radiologists notes, but he wanted to refer me to a Neurosurgeon. I quickly corrected him, “Neurologist you mean”, to which he responded, no, Neurosurgeon. Odd, I thought, but maybe they did things differently in Atlanta.
I got an appointment one week later with a Neurosurgeon and went alone. Why not? Nothing had changed and as far as I was concerned, this was a formality and they would tell me the same ‘ol shit… maybe another follow up MRI and blah, blah, blah.
I brought all my previous films with me and waited. I was more concerned with what time I’d get out of there and if I needed to run a coordinated effort with Paul to fetch the boys at pre-school since traffic can be a bitch in Atlanta. The PA asked a lot of questions and kept throwing out terms and asking if my Charlotte Neurologist had mentioned this or that. I told him I had no idea, that I never understood anything that she said and since she never told me anything concrete or alarming, I wasn’t worried… wasn’t it normal to have a small lesion?
Frankly it’s kind of a blurry memory how we got to the point when I understood what my first Neurosurgeon was talking about. I had a brain tumor, type not known for sure, but it appeared to be a low grade Glioma, and small.
Shock, disbelief and what the fuck are you talking about went through my mind.
I sat there looking at him as he stood patient and silent watching me absorb the information passing me a tissue as I stared at the MRI film glowing on the wall and back at him. My immediate response was “can we take it out, radiate the shit out of it, do chemo… what can we do?” He felt like it was too small to remove and since I was symptom free, had not had any seizures or headaches and that the risks of surgery outweighed the benefits of a precise diagnosis.
Wait and see was what he left me with and the watch and wait path would remain the same with each appointment no matter how persuasive my argument to the contrary. This philosophy of watch and wait had ignited a fire inside me and challenged everything I felt, knew and was as a patient. I had always addressed health problems, never sat on the sidelines and waited for something to get worse… I was a fixer, get this shit checked off the list patient. I wanted this thing out and it made more sense to me to remove it and know what it was than wait and see what happens and wait for it to get bigger and wreck havoc in my head. I kept coming back to the basics: if it shouldn’t be there, take it out.
I started getting other opinions, reading reputable literature about Gliomas and brain tumors and with each passing day, got less and less comfortable with doing nothing. I just knew something was wrong, that this needed to come out and most importantly, I needed a NEW Neurosurgeon who was going to work on my team with me, not against me.
Everything happens for a reason.
While I lived the most miserable and emotionally painful year of my adult life between 2007 and 2008, I recognize that the year was a valuable gift and without the time, I would not have had the ability to be deliberate with my questions, self examination nor had the time to come to terms with what I knew to be wrong with the “Wait and See” and pursue other opinions and find a new Neurosurgeon.
It was my decision to form a team and participate with the Southeastern Brain Tumor Foundations Race for Research in 2007 (two weeks after my initial diagnosis) that opened a valuable door into a world I had been searching for. The SBTF are a group of people who understood what I was going through, knew my experience, my feelings, emotions and became my kindred spirits.
While I was in the infancy of my grieving process for what had just changed my life, they provided support, compassion and understanding that got me through the next year and saved me. I attended every symposium, grant award ceremony, board meeting as a visitor, and volunteered working on the 2008 Race website, hosted meetings and did anything my calendar and time would allow me to do. It’s through the SBTF that I became familiar with Emory and the research that they were doing in Neurosurgery and brain tumors and got to know some members of the Neurosurgery team.
It seemed natural to go to Emory and get their opinion. I had kicked the tires with them for months, read up on their reputation, developed relationships and ended up asking fellow SBTF Board Member Dr. Costas Hadjipanayis for his opinion and forwarded all my scans to his office. I knew Costas from the SBTF, had the chance to know him outside of White Coat world and liked him. He’s young, fresh, ambitious, very smart, well respected in his field, compassionate and funny.
I was getting the boys out of the car at the Zoo in early June 2008 when my cell phone rang. Fumbling to get to it and silence the kids at the same time since I didn’t recognize the number; I answered and my life changed.
It was Costas. Over the course of 30 minutes in the parking lot at the Atlanta Zoo an entire year of agony, fear, doubt, mortality, anger, frustration and general malaise faded away to the words that came out of his mouth.
I don’t see why we can’t operate and get a full resection with little or no side effects.
Ordinarily when presented with the option of a craniotomy, removing a tumor and part of your brain, most people would duck and run the other direction. Nn the contrary, I stood my ground with enormous relief and joy that there was hope for me. This was a good day! I couldn’t believe what I was hearing as he explained with such confidence why this was possible and other details that whirled in my head; it was like snow on Christmas and we live in Atlanta – unbelievable! This was the best news I had heard in a year and it finally seemed plausible that there was light at the end of the tunnel of unknown madness.
Paul and I followed up with the official office visit a few weeks later and we talked through everything. The what “it” (the piece of shit thing that resided in my head) appeared to be, what that meant, the risks of surgery, best vs. worse case scenarios, and everything in-between. I knew before Costas walked into the room that I was going to go ahead with the surgery, I just knew it had to come out, but going through the motions of answering all the lingering questions and kicking the tires a little more did make the decision easier.
The responsible decision, as I termed it, was to do anything possible with out being reckless. I was a wife and mother to two young boys with a life to live and I owed it to them to do anything possible to ensure I was around for years to come – that is what we all expect. Going after my tumor was my decision and one Paul fully supported. I had a great Surgeon with an outstanding team at an outstanding medical facility. I was ready to step into the ring and had only one simple goal in my sights and that was to survive.
I have joked with friends, but I believe my philosophy is accurate.
The right Doctor is like having a good marriage. The immense amount of trust you instill in your doctor should be equal to that which you have with your spouse. Like marriage, the Doctor – Patient relationship exists with no guarantees but exists with profound good will, trust, faith, compassion, great communication, shared goals and direction and a solid perspective. I have a great marriage and an equally great Doctor.
Getting involved with the SBTF has been a lifesaver and working now as a Board Member, I understand it’s the collective support from a group of people equally affected that is what makes me, the patient, whole. A kindred spirit amongst a diverse population of people is what got me going again in early 2008 and the strength provided has been with me since.
I believe my journey would be different if I hadn’t challenged what I new in my gut to be wrong, if it were not for the SBTF and of course if it were not for Costas.