Sandy B.

Diagnosis: Adenoid cystic carcinoma of the lacrimal gland with metastasis to the liver
Treatment: Removal of tumor resting on tear gland above the eye, Feb. 27, 1996; surgical removal of tumor on liver, Jan. 22, 1996; proton beam radiation

Profession: Special educator

I'd never had surgery in my life and within two months I had four procedures. I was a lot braver than I ever thought I'd be. It would have been very easy to be angry because I wasn't diagnosed earlier. People said, "I can't believe no one saw the tumor." We all felt mistakes were made, but I needed my energy to fight cancer.

It all started with a droopy eyelid, which happened gradually. Doctors, at least five different specialists, were examining me over a two-year period. They ruled out everything. Nobody could find a reason for the droopy eyelid. Some said it could be a function of getting older. I had several MRI's which were inconclusive. One doctor said it was nothing neurological but if I wanted to do something about it for cosmetic reasons I should talk with a surgeon who had expertise in reconstructive eyelid surgery. She gave me a name and I brought my MRI films to him. He said I needed a CT-scan. On the scan he saw a mass in the left orbit on my tear gland. My husband, Barry, and I were in shock. It had been there all along and nobody saw it. Our first question was, "How is this possible?" He said, "They weren't looking at your eye. They were looking at your brain, for a neurological reason for your droopy eyelid."

I needed a biopsy. The doctor said, "There's a much greater chance it's benign."

We were just totally freaked out. There was something there and nobody saw it and it just so happened we went to this doctor. I might not have gone to him for a year because I wasn't so upset about the cosmetic effect. He was going out of town and I didn't want to wait. A friend referred me to another orbital surgeon, for a second opinion, Dr. John Shore, who agreed that I needed a biopsy. He was a compassionate human being. As shocked as we were, he helped us feel comfortable. He exuded so much confidence and expertise that he was very easy to trust.

I think he was as shocked as we were that it was malignant. It's a very rare form of cancer.

My husband had come with me for every appointment and he was really good with our kids, who are now 14 and 17. He explained everything to them. My son, Jesse, had a very strong reaction. He was 15 at the time and he was furious. He felt like I was constantly going to see doctors and could not understand or accept that they all missed it! My daughter was very sad and frightened, and she turned her feelings inward. Both of my kids' guidance counselors and several teachers were extremely supportive.

After the biopsy, my husband frantically did as much research as possible in a short time. We paid for a computer search on adenoid cystic carcinoma of the lacrimal gland. We decided to go to Philadelphia for a second opinion. That was a major letdown. With no reservation, the physician recommended removal of my left eye. Needless to say, we favored Dr. Shore's treatment plan: removal of the tumor followed by radiation.

Other scans were done to see if the cancer had spread. They found an enlarged thymus gland and a spot on my liver so two procedures followed. The thymus was OK but they removed it. To this day, we still have questions about the need for removing it. The liver was not OK. The cancer had metastasized to my liver. It took a long time to recover from the liver surgery, which is abdominal surgery, major surgery.

The whole experience was very much like a roller coaster ride. They had said if the thymus was OK, it would be highly unlikely that the liver would be involved. So we were totally unprepared when the opposite happened. To this day it still amazes me that the cancer spread from my eye to my liver rather than to any other organ in between. Well at least they took out the entire mass on the liver and got safe margins around it. The liver is a large organ and it rejuvenates itself. I felt relieved and cured of the cancer on the liver.

Then I had to recuperate for a month after the liver surgery before undergoing the neurosurgery to remove the tumor above my eye.

Dr. Shore had told us he wanted to have a neurosurgeon involved in the eye surgery so we went to see Dr. Robert Ojemann who said they'd have to shave the front part of my hair and make an incision from ear to ear. His part of the surgery was to test the nerve leading to the brain to be sure the cancer hadn't moved in that direction. Since the surgery, I have numbness from my temple to my mid-forehead. The hair grew back over the scar. Clearly, this surgery was the scariest. It was nine hours. This was brain surgery!

Sometimes I felt like my mother, sister, husband and kids were more freaked out than I.

I couldn't focus on lying on a table with my head being cut open.

Barry: Sandy was incredibly brave. I wanted to be at all her appointments to support her and help get all the information we needed to make important decisions. My job was to be the researcher and I kept the family going. Sandy and I have different types of coping mechanisms. She is more inner-focused; I tend to be outer-focused. Friends and family were unbelievably helpful. They always showed up at the right time. This whole thing got me closer to God and changed my life forever. I needed a way to deal with my fears. I did a lot of reading and amazingly, the moon, the regularity of the world and nature became very important to me. Some people say take it day by day, but I took it moon by moon. I never knew what next month would bring, even death. There was a lot of fear. Sandy stayed extremely positive and hopeful, more than I did.

Sandy: He had me gone way before I did. I was, however, scared about this surgery. The thing I focused on was my faith in God and in my doctors, and I somehow felt like I was going to be all right. I really didn't think I was going to die. My entire family rallied. They all came to support me.

After surgery I had proton beam radiation, which they perform at the cyclotron on the grounds of Harvard University. It's a very targeted form of radiation.

Barry: It has the least amount of scatter but it's the highest intensity of radiation. The effects of radiation really worried me.

Sandy: I was blessed with yet another remarkable, compassionate doctor, my radiation oncologist, Dr. Eugene Hug. And I was able to speak with a woman from Maine who is my age, who had the same cancer and had just finished radiation at the cyclotron. She told me things nobody else could. I had to be fitted for a mask. I had to have dental impressions for a mouthpiece. It was all very intrusive and invasive. Now I feel part of my mission is to help people connect to another person going through the same treatment. I'd like to see more information available about this kind of radiation. I had 41 treatments. I'd go five times a week. The cyclotron doesn't look like a medical setting. The treatment chair looks like an electric chair. It looks like someone went nuts with an erector set, all this cold, exposed metal.

When I talk about all this it brings back what an incredible ordeal I've been through. I did have some side effects from radiation - an inflammation of the brain stem, which affects balance and walking. They put me on high-potency steroids.

Barry: The steroids had some side effects.

Sandy: I was nuts. I couldn't sleep. I turned on home shopping on TV and I bought everything in the world. I was manic and had grandiose thoughts. I was on steroids for about a month, which took care of the inflammation. Today I'm good. I'm doing some alternative things like acupuncture. I'm taking herbs and vitamins. These things have really helped me feel like I have some control over my healing. Still, if any little physical thing happens, it scares me. The biggest issue is my one eye is shut. That has been a major adjustment for me, not only physically, but I don't know when or if the eyelid could be lifted. I asked the doctor if I should stop hoping the lid could be lifted and she said, "I'd never stop hoping." They'd have to reconstruct the muscle and if they lifted the eyelid the tear gland isn't there so dryness would be a problem. There are all these if's. I have no peripheral vision on the left and my depth perception is a little off. The cosmetics is another piece of it. I meet somebody new and I'm wondering, "What are they thinking?" It's almost more comfortable if someone just asks, "What happened to your eye?" That's almost better than my imagining what they're thinking.