Carol's Brain Tumor

In early January, doctors at Kaiser diagnosed a mass in my head as a benign meningioma, a brain tumor, in the left cavernous sinus near the pituitary gland. Due to the sensitive location, surgery was not recommended. Radiation treatment was recommended and, since Kaiser doesn’t do radiation treatment, they referred me to Stanford for "Cyberknife" treatment.

The cyberknife is cutting-edge technology which uses a linear accelerator and computers to shoot radioactive particles directly on target into the tumor. Dr. Steven Chang, the head of the team that treated me, explained that the surrounding tissue in the brain is resistant to the radiation so the radiation kills the tumor and does little to no damage to surrounding nerves and tissues. Still, the idea of having radioactive particles shot into my brain was a little nerve wrecking. That and the fact that my head was literally pinned down to the table. I’ll explain.

I went to Stanford on Thursday, January 23rd, to be introduced to the cyberknife, to have a mask made, and to have a CT scan of my brain. In preparation for the CT scan, I told the nurse, then one of the doctors, that I had had a CT scan of my body done the week before at Kaiser and had broken out in a rash the day after. Because of the previous allergic reaction, they pumped benadryl and a steroid (Decatron, I think) into my vein, then, since I was in no shape to walk, carted me over to the Blake Wilbur Clinic to meet the cyberknife. The cyberknife looks like a huge microscope and I was placed on the table so that my head was just underneath. But on that day, all they did was put a blue mesh material over my face and press it down over my features to create a mask. The mask dried quickly and was taken, along with me, over to Radiology for the CT scan.

In Radiology, the mask was placed over my face and fastened down on the sides. But then the radiologist came out, asked me questions about my rash and feelings of constriction in my throat and vetoed the CT scan without proper preparation. That night I needed to take 50 mg of Prednisone at 8 pm, 2 am and again at 8 am the next morning along with 50 mg of benadryl, then went in for the scan. The scan took place without a hitch though I did break out in a rash again the next morning and was wakened with tight, constricting feelings in my throat. I took more benadryl and soon felt better. Clearly, I’m allergic to the dye injected into a vein for the CT scan.

The next Monday the first of three cyberknife treatments began. I was told each treatment would take about 40 minutes. Each treatment began with the fitting of the mask over my face and fastening it down on the sides of the table, so my head was literally pinned down. I was told to close my eyes due to the fact that laser beams would float by now and then and shouldn’t get into my eyes. I went into this thinking that with 8 years of meditation practice, all this shouldn’t bother me. Well, I think I set myself up for trouble with this thought. The first 5 or 10 minutes were spent getting me into just exactly the right position, then everyone else left the room heading for cover behind a lead wall and the cyberknife was turned on. I could see the impression of the lights behind my closed eyes, I could hear buzzing sounds and hear the movement of the cyberknife. I was told that if I needed to swallow, to go ahead and swallow, and if I needed to cough, to go ahead and cough. But all I could think of was staying perfectly still so that none of the radioactive particles would end up in a wrong area of my brain. I also seemed to think that I was going to be an example of how someone who meditates can be calm and cool about all this. But instead, in my efforts to do this, I could not calm myself and began to feel fear and panic.

The first time I felt fear, I invited the fear to be with me and endeavored to comfort and calm my fear. This seemed to work a little. But when I kept having trouble slowing my breath, I began to feel fear again. This time I instinctively told myself, "Don’t go there!" I began to distract myself from the thoughts of fear by thinking of other things. This helped! Later I remembered Rumi’s poem about "not going where fear would like to lead you." In this case, this was so true. So, by the end of the first treatment, I did manage to calm down.

On the second day, my daughter, Anne, took me to Stanford. This time when I began to notice twinges of fear, the thought came to mind that instead of being afraid of the cyberknife and what it was doing, that I needed to relax and let it do what it needs to do. "It’s there to help me, after all," I said to myself. So with that thought I began to align myself with the cyberknife. "Go cyberknife, do your stuff!" Then I just let myself experience everything that went on. One of the things I noticed was what looked like traces of particles visible inside my closed eyes, as if you see a shooting star fall and the trail it leaves behind, though not bright. It seemed suddenly as if the inside of my head was like space–that particles could go shooting through in between cells and atoms but stop in just the spot where they needed to be. Amazing! The next thing I started to do during this second treatment was what is called Loving Kindness Meditation. I began to think of individual people in my life and to send good wishes their way. And so went my thoughts, on and on for the rest of the session, thinking of one person after another and of what might be helpful for them. At the end of this treatment, as they were removing the mask from my face, I could hear Anne’s voice as she entered the room. Anne told me later, "Mom, you were glowing." "You mean with radiation," I said jokingly. "No, Mom, you looked really happy." I was. I felt incredibly happy. I used this approach during the last treatment session and it went very smoothly.

I felt no pain during or after the treatments. I was told that some people might feel headaches or nausea and, at the end of each treatment, I was given a tablet of Decatron to help prevent swelling of the surrounding tissues and relieve any possible side effects, but I never had any. No, I take that back. I did experience sleeping problems and weird dreams at night, then tiredness during the day, but these problems disappeared after a week.

At any rate, following treatments I would come home and just relax. The afternoon following the completion of the cyberknife treatments, I received the latest issue of Shambhala Sun (March 2003), a Buddhist magazine, in the mail. I opened it up at random and found an article called, The Lama in the Lab. The article described research that’s been done with the help of practiced meditators to show whether or not there are any brain changes during different types of meditation. I ran and grabbed a highlighter when I read this on page 68:
"In short, Oser’s [a meditator who was being tested] brain shift during compassion seemed to reflect an extremely pleasant mood. The very act of concern for others’ well-being, it seems, creates a greater state of well-being within oneself. The finding lends scientific support to an observation often made by the Dalai Lama: that the person doing a meditation on compassion for all beings is the immediate beneficiary."

It was so amazing to me that this magazine arrived at my house on the very afternoon that I finished my radiation treatments. I knew what they were talking about–from my own experience! But I’m aware of something more–that this healing does not end with me. I feel so grateful to be alive. I feel a renewed commitment to my Bodhisattva vows, to my work as a Mental Health Counselor, to my relationships, and to my laundry. Now, more so than before, the laundry is nirvana.

"May all beings be happy."

Carol
February 8, 2003

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