Cancer Doesn't Play by Any Rules

March 16, 2007. The day of my cancer surgery. The first step in a grueling journey.

We (my husband and I) had to be at the hospital at some inhumane hour - if I remember right, it was 5:30 A.M.. This was because the doctor was planning a sentinel node biopsy to check my lymph nodes for cancer, and the lead time for this procedure was about two hours.

Lymph nodes form a chain, like little beads on a string. About 90% of the breast's lymph fluid drains to lymph nodes in the underarm area. The first lymph node the fluid reaches is called the sentinel node, and doctors have found that if there is no cancer in that first node, then the lymph nodes will be cancer free. Hence the 'sentinel node biopsy'. About two hours before the surgery I was injected, with three shots around the nipple, with radioactive isotopes. Then we waited for these to drain through the lymphatic system into the underarm area. Before the surgery, I was injected with blue dye, which would color the lymph nodes blue. The doctor found the sentinel lymph node using a Geiger counter (tick, tick, tick) and where the ticking was the loudest, he cut, and looked for the blue node. Really a swift little procedure, if one can get over the fact that the stuff they put in my body had to be carried in a lead box. Hmmm...

I have very clear snapshot memories of that day. After being injected with the isotopes, I went back to pre-op to wait, and since I'd been up since before dawn, I fell asleep. When my surgeon came in to talk with me, and I jerked awake, he said, "Were you sleeping?" I admitted I had dozed off and he said, "People don't sleep in here." Pre-op was a very noisy place, and thinking this is what he meant, I said something about being able to block out the chaos. But I had misunderstood him. He meant that people didn't sleep before cancer surgery because they were afraid. And my clear memory from that moment was that I was totally unafraid. I was resigned to do what must be done, I wanted the cancer out of my body, and I was confident that I was in God's hands. So I slept.

Another snapshot memory: when my anaesthesiologist came in to have me sign the consent form, I noticed that she was about nine months pregnant. Truly - she looked like she was about to give birth. So I casually asked, "When is your baby due?" She laughed, said two weeks, and promised me she wouldn't deliver in the O.R. during my surgery. And my thought as she left was, "Like you can control that..."

My cancer surgery was scheduled to last about four-and-a-half hours. I had chosen to have immediate reconstruction, after a bilateral mastectomy. The sentinel node biopsy would be done, and if the node was positive for cancer, an axillary dissection would be done to remove a pocket of lymph nodes. Then the mammary tissue would be completely removed, along with some skin and both nipples. Then the general surgeon would hand off to the plastic surgeon, who would place tissue expanders under the chest muscle on both sides, partially fill them with saline, and then suture the wounds.

I knew my family would be told during surgery if the lymph node biopsy was positive or negative. If the biopsy was positive, the surgery would be at least an hour longer in order for the doctor to do the axillary dissection. When I woke up in the recovery room, I of course didn't know what had happened. But the biopsy is what I was thinking about when I went to sleep, so the biopsy is what I was thinking about when I woke up. I had every reason to believe the biopsy would be negative. The amount of infiltrating cancer cells in the breast was very small. In fact, the pathology report read that a "trace amount" had been seen. So, I was expecting the biopsy to be negative. My recovery room nurse told my husband that I asked her three times about the biopsy results. The third time I said, "Am I dreaming, or did you tell me my lymph node biopsy was positive?" And she called me honey, and said I wasn't dreaming.

I squeezed my eyes shut and felt tears fall down the side of my face into my ears. I really couldn't believe it - it was the worst news. I thought my surgery would be 'it' and now I knew I was probably facing chemotherapy. When the orderly came to wheel me to my room, I told him my biopsy was positive. And I told my nurses, and my husband, who already knew. When the doctor knew there was cancer in the node, my family was told, and also informed that my surgery would be longer, actually lasting six hours. And then when my parents came in I told them, and other family members, and all the while I was crying, crying, crying. At some point I caught my husband giving me a sidelong glance, full of concern, like I was possibly having a breakdown. "Are you okay?" he asked. No - I am so NOT okay. During the night, I remember a physician's assistant sitting on my bed, holding my hand, as I bawled about my lymph nodes. I simply could not get a grip. I found out, much later, that one of the side effects of anaesthesia, experienced by some people, is a reduced ability to control emotion. In reality, it made me a basket case, for about a day. When I woke up the next morning, I looked at my husband, who had spent the night in my room with me, and said, "I'm okay now."

The day after my surgery, my plastic surgeon came into my room to check on me. He asked how I was and I said I was so, so disappointed. I know he thought I was talking about my reconstruction, because he (rather gruffly) asked what I was disappointed about. And I told him I just couldn't believe my lymph nodes were positive. His face softened and filled with compassion. In that instant, I felt myself become a real person to him, not just a patient, and he became my ally. And he told me, " Cancer doesn't play by any rules. Concentrate on doing what you have to do to get well." I realized that I was playing a game with an opponent who cheats. I would never find a sense of fairness in this experience. And it helped somehow to accept that.

In spite of an extreme level of pain, and muscle cramping across my chest (no fun), I had an overly cheery nurse drawing smiley faces on my board and writing under patient goals 'going home today.' I must say, throughout my cancer ordeal, my nurses were, for the most part, absolutely wonderful. This nurse, however, failed to actually see me. When I told her I didn't think I was ready to go home to my children, she just smiled, assured me I was and that I'd soon be up on my feet and out of there. So I told my plastic surgeon, my newest ally, and the next thing I know, said nurse marches into my room, without looking at me, and erases the smiley faces on my board. Then she changes patient goals from 'going home' to 'pain management', turns on her heel, and marches out. I stayed another night, which made all the difference in the world. I felt like I could present a happy face to my children, which is critical, as any mother knows. Three cheers for Dr. H, the doctor who made me cry (see the post Dignity), and the doctor who helped me stop crying.