by Jennifer
Four years ago my life changed while attending a conference in Las Vegas. As Executive Vice President at McGraw-Hill, I was committed to attending two big annual meetings a year. I arrived in Las Vegas exhausted after a month of nonstop business travel. I kicked off the conference on Monday with a my own mini-conference designed to inspire company sales and marketing individuals on how to "beat the odds" and "corporate numbers."
I had 36 client meetings in three days. I felt funny throughout the conference and I thought I might have picked up a bug traveling. At the close of the conference on Thursday, I dashed for a quick exit and jumped on the airport bus with my colleagues. We were reviewing our week and strategizing our next steps, when I realized that huge chunks of our discussion seemed foreign to me. Based on our conversation, I wondered if I had been in the same room with them at the conference. When I mentioned this they agreed and said I seem stiff and had drifted off a couple of times during this meeting. The last thing I remember was the voice of gentleman sitting next to me on the bus. Leaning over, he said his wife had experienced epileptic seizures for years and what I had described to my colleagues sounded eerily the same. "Don't wait, get help immediately or you could get hurt," urged the kind gentleman.
I don't remember his name, but I think of him as my angel. The word seizure stuck in my mind, giving a name to what I had experienced the last few days. The moment I landed in San Francisco, I went to the emergency room
The two ER doctors on duty could not explain the nine petit mal seizures I had experienced. They released me from the hospital at 12:30 a.m. with the names of four local neurologists.
"Find one of these doctors who will see you tomorrow - do not delay," warned the ER doctors. I met with the neurologist the next day. Later that night I had my first MRI at UCSF Medical Center in San Francisco.
I asked the MRI technician if he had seen anything of interest.
"No, not yet," came the response.
"Hum," I thought to myself, "after 40 minutes inside a noisy tube I had hoped for some news." Ten minutes later the technician said that my doctor was on the phone. He wanted to speak to me immediately! My doctor told me that I had a good-size tumor, and my first earned freedom in life was forbidden. I could not drive.
"What?" I retorted, as we argued over his driving dictum. The word 'tumor' hadn't truly sunk in. I was capable of focusing on one item at a time, and having driven to the hospital, I saw no valid reason not to drive home. After much snarling, he won. I called my husband, David, to drive me home. Upset, I focused on the fact that a DMV report would have to be filed, my car keys tossed into a drawer and that was that. What else was there to say? Okay? No, it was not okay!
The next three weeks were filled with a lot more "it's not okay". The maze of insurance acceptance and approval elicited a litany of snarl and snap from me as my 'to do list' grew. Quantities of blood needed to be drawn for a battery of tests. I needed another MRI, followed by a CT Scan and EEG. Finding the best hospital and a neurosurgeon was paramount; yet, everything required approval from the insurance company.
My research for the best help for brain tumors in my area sent me to a neurosurgeon at UCSF. However, my insurance insisted I go to another institution. The doctor at the other institution wanted to do a biopsy. The tumor was embedded deeply into the left lobe, in a delicate position behind the eye and below the ear, in the center of the brain where language and memory is stored. What would a biopsy show that the MRI didn't show I questioned? When I couldn't get a straight answer, I made an appointment with a surgeon at UCSF. He disagreed about doing a biopsy saying that it was an unnecessary procedure. We already knew that the tumor had to come out.
In the meantime, the Human Resource department at my employer promised me the insurance rules could/would be flexible. I should not worry. I could have the necessary surgery done by the doctor of MY CHOICE. "How else should it be?" I asked.
With the insurance resolved, I proceeded to tackle my 'to do list.' Three weeks later, and the day before my surgery was initially scheduled, my surgeon's assistant was discussing last-minute details about how my waist-length hair would be cut when she mentioned that they had not received my insurance approval for tomorrow's surgery.
Stunned, I asked to use the phone and called the head of Human Resources himself. He said, "I cannot deliver the insurance adjustment as I promised I might. So sorry, the other institution is it, and oh yeah, you need to receive brain services from an authorized doc of their choice."
I exploded. Then I fought back.
"That won't do. If you can't approve it, find the person who can," I shouted sounding like a fishmonger's wife.
"I'll try again," he said.
Guess what? Twenty minutes later I did receive approval. Crankiness worked! Did I think the man in H.R. was a bad guy? No! Well, not once I calmed down … a year or so later. He was just doing his job, like I was doing mine.
For me, reality meant fighting back and not letting go. I got what I needed and was able to stay with my surgeon at UCSF, yet even that had its own craziness. Not from a surgical perspective, but from events that took place in the pre-surgery room on the first scheduled day of surgery. I was all prepped and ready to go, complete with round rubber mats stuck all over my face, needles tucked in everywhere, looking like hell, and feeling the same, when my surgeon said that a piece of critical equipment required for the surgery was still in use for someone else's surgery.
"Could we give this a shot next week?" he asked.
"Sure," no problem," I said.
My father, brother and husband were all stunned to see me saunter into the waiting room. There was nothing to do, so we all went to lunch. I ordered a glass of wine. Everyone disapproved.
"I'm not going to stop living for Pete sake," I said, lifting my glass.
If you think being polite all the time is a better idea when facing serious issues like brain tumors, there is evidence proving the contrary. A strong belief in one's right to fight-back-and-win works. I read it in Love, Medicine & Miracles by Dr. Bernie Seigel. In my opinion, the best part of the book was the part on the use of the word hostile.
On the other hand, hostile was only one attitude I assumed during this crisis; laughter was the other. I used to think that I always loved life. Now, I know I love life. For me, this day of surgery was the beginning of my 'day of smiles.'
A week later, I was ready for surgery, well almost. There was some last minute discussion with one of the attendants about shaving my head more than my surgeon had mentioned. Of course, I said no- only the area of surgery was to be shaved. When my surgeon came in I said to him, " I would hate for you to come back after a cup of coffee and find that someone had shaved my entire head."
"Don't worry," he said, "I'll shave it for you."
I was awake for the 9 ½ hour 3-dimensional surgery. Guided by MRI, my surgeon carved a path into the brain. While he carved the neuro-therapist asked me to repeat letters, using my speech to help guide the surgeon.
My sense of humor kept the entire surgical team laughing during the surgery. While the team negotiated through the difficult paths of the brain, I shared stories about the challenges of working with a number of major corporate accounts. My surgeon finally had to ask me to "be quiet" so he could close me up.
I knew that the location of the tumor would have some impact on my speech. My surgeon assured me that speech therapy could remedy my loss of speech.
Speech therapy? Yikes! Language was my passion. But when I could not articulate more than 10 words, spoken like a very small child, the impact of his words sunk in. Attempting to talk required rethinking a lot of old things, and discovering new ones.
Two weeks after my surgery, I decided to visit an acupuncturist, hoping acupuncture might help my speech. One afternoon, after several treatments, David and I left my acupuncturists office when I looked at my watch and said, "each time I see her, I get so hungry, but I also need a nap in about an hour and 45 minutes. Will we have time to get everything done, and something to eat before I fall asleep?"
David's face froze in amazement. I had spoken complete phrases. Needless to say, speech therapy was never considered!
I had plenty of post-surgery moods to deal with, nor did my crankiness disappear overnight. Only 80% of the grade 3 anaplastic astrocytoma found was removed. In order to reach 100%, I began radiation followed by 10 months of chemotherapy. There is no question that David, my lifesaver and personal chauffeur, paid a huge price while I was trying to feel independent again. I owe him an apology, but could not have changed a single thing.
Questions regarding my survival never stopped. I believed then, and still do that humor works for both patients and doctors. When I received radiation treatments, the wonderful technicians asked if I was in the mood for music. "Of course!" I said.
The minute they put on a Flamenco, Tango, or Cha, Cha, Cha CD, my fingers started snapping. I pictured myself dancing on 'la terraza', a wonderful escape from reality.
Half way through my radiation treatment, my radiologist went on vacation. A colleague of his stepped in for a few weeks. Apparently, the colleague did not see eye-to-eye with my radiologist's method, and informed me that he certainly would have chosen a better way to administer my radiation.
Did he really think so? Did I ever ask for his point of view? Did I like being caught in the middle of two medical egos? Did I become cranky? You bet I did!
After radiation, I returned to work where I was met with another fact of life-others rarely embrace brain cancer! My energy was low. I felt challenged and afraid to take the wrong step and fail. In the process I learned how love freely flows from family and friends.
Traveling once again for weeks at a time was out of the question. Not exactly a business style appreciated by corporate executives. And, guess what? Six months later, McGraw-Hill terminated me.
As an official member of the "Cancer Corp", I continued to be advised, supervised, discussed, reviewed and judged not for topics I understood (publishing survival) but for an event in which I had no control, my personal survival.
Before surgery, my goal had been to build strength. After surgery, I wanted to regain and maintain energy during the chemical chemotherapy battle. Assuming control of my life, I began to weave a bridge between two distinct medical philosophies. On the West Side, western medicine, which works to fix a health problem, on the East Side, I discovered acupuncture, which strives to combine the mental and physical well-being of a person.
Since my surgery, I have learned to lighten up. When people in San Francisco drive like ding-dongs, and elect to turn-left-from-the-right-lane, rather than honking, I smile, and back off. Rather than communicating via voice mail with David from Boise, Idaho or Sao Paulo, Brazil, I now actually spend time with my husband. Cooking experiments are held all the time and I think he likes them. I rediscovered my childhood passion for art. I'm working with textiles, using the creative right brain, the side that was not damaged by the tumor.
My briefcase and the Vice President/Publisher business cards have long been packed away, replaced by khakis and sweatshirts. I find the joys of life in small treasures all around me.
So my question to you is, Which Door Will You Choose? I chose laughter and fighting back.
We have many doors to choose from. Which door will you walk through?
August 2010 Update:
A few days after my surgery, the pathologist told me that my next best step would be to get my paperwork in order as I would not survive longer than 2.5 years - with or without radiation and chemotherapy. Pathologists do not normally speak with the patient, but he was a friend of a friend of mine, and she encouraged him to share his observation with me.
In 2010 I celebrated my 13th Anniversary, and plan not to stop until the Calendar Year reaches 2036. Years before I was diagnosed with brain cancer, I promised my husband I would take him rowing in Paris on my 82nd birthday, and plan to stay true to those words! Never give up. Never back down. Never accept what anyone else tells you...
