This is an unedited chapter from my manuscript about the beginning of chemo in 2012. I promise we will get back to cute animal stories soon. Just have to complete this crazy cancer stuff first. MRB
After ending the year with these moving spiritual experiences, I faced the new year with a glimmer of hope. For the first time since the surgeon had blind sided me again, I started to think I had a greater chance to survive this than the surgeon had said. The radiation doctor had seemed more hopeful than the surgeon. When I called and asked him why he hadn’t told me about the mets in the other organs, he said: “Whether it’s one mass or three thousand, it doesn’t matter.” Then, he repeated the exact mantra the surgeon had told me: “It’s all about the chemo.”
He further explained his reason for not telling me the entire truth. “We don’t want to destroy your hope. You can’t fight cancer without hope.”
I later discovered this philosophy was shared by the acupuncturist I visited regularly after I started the chemo. His treatments helped me cope with the pain and nausea the chemo caused. He had a medical degree from the University of Beijing and took his art very seriously. I enjoyed talking to him about the differences between Western and Chinese medicine. He echoed what the radiation doctor had told me. In China, he said, they never tell the patient he has cancer. They tell the family, but never the patient. “As soon as you say ‘cancer’ to patient,” he told me in his adorable broken English, “patient shut down. Mind shut down. Hope shut down. Need hope to fight cancer.”
By the time I met my chemo doctor for the first time, that first week of the new year, my hope was already a James Bond martini, shaken not stirred. I had to prepare for the toughest battle of my life, for my life, and the hope I needed for strength was frail and quivering.
Despite all the mysterious and powerful events I had experienced that week, I still had no expectation I was gong to live. God was making Himself known to me, but to call me home and ease my fear about the journey. I tried to re-ignite my hope into the bonfire I needed and told myself “It’s all about the chemo,” as the doctors had told me, but the most I got was a flickering flame in a gusty wind.
This first meeting with my chemo doctor doused that flame right out, with a fire hose.
Apparently all the doctors had gotten together and declared that one of them needed to give me the devastating whole truth. Dr. M, the chemo doc, had drawn the short straw.
Within just a few minutes of his friendly greeting, he hit me with everything I wanted to know about my cancer, but couldn’t bear to hear. The situation was worse than I thought. All the masses had lit up on the PET scan. No doubt about it, even the smallest specks in the lungs were cancer. There weren’t just three masses in the abdo, as the radiation doctor had misrepresented to me in attempt to sustain my hope, there were countless masses. They couldn’t put a number on them. Dr. M called it a metastatic shower.
He paused and offered me a box of Kleenex. I wasn’t crying, yet, but he knew there was more. Much more.
The biopsy showed that this was a particularly aggressive cell type, he said. Endometrial carcino-sarcoma. Then he turned on that fire hose. According to the statistics, less than 20% of women with this particular cancer were alive at five years out.
Oh, yeah. I’ll take those Kleenex now.
Seeing my reaction, he futilely tried to give me a little hope. “But of the ones that do survive,” he said, “they survive 100%.”
While I was still pondering how anyone could survive less than 100%, the dousing continued. More stats. He just loved those stats. Only 40% of chemo patients with this type of cancer showed any response at all to chemo. So, even though it was all about the chemo, I only had a 40% chance that the chemo would even work. Even if it did work, I had only a 20% chance that I would live another five years.
“You have a choice,” he said. “If you choose chemo, we start next week.”
“What’s my other choice?” I asked, thinking he was going to suggest some experimental therapy or radiation.
“Your other choice,” he said candidly but compassionately, “is to enjoy the time you have left without the medication making you sicker.”
“That’s not a choice at all,” I said.
“Some people prefer that,” he told me. “Especially when the odds are that bad. But these are just numbers, they aren’t you.”
I knew he said that to try to convince me to fight. He didn’t have to. I was all in. Even though I still harbored the feeling that the cancer would win and it always did, I had to fight. I had to fight so my family and Steve would not lose hope. They could not ever know the drastic details. In their minds, as long as I was fighting, there was a chance I would be cured.
“I promise you,” I told Dr. M, “I won’t give up.”
“It’s going to be tough,” he said.
“So am I.”
With that, he laid out the plan. Starting next week, I was to receive IV Taxol and Carboplatin every three weeks. He went through the litany of oh so pleasant side effects I should expect: nausea, hair loss, fatigue, anemia, low white blood cell count, bone pain, muscle pain, nerve pain, numbness of the extremities.
My acupuncturist later explained the basis of chemotherapy to me: “Goal kill cancer and not kill patient. Sometime kill cancer, sometime kill patient.” This was a very effective and succinct way to say what Dr. M was taking minutes to explain.
“You’re going to have to take some time off from work,” he told me.
I wasn’t trying to be a difficult patient; I had long since learned to do everything the doctor told me. Time off, however, was not an option. I was self-employed. I had no vacation days, no sick days. The Family Medical Leave Act applied only to my employees, not to me. No one was gong to pay me to not see patients and hiring someone to cover all my hours would bankrupt me. Our business was our sole source of family income and also the sole source of income for our employees. I couldn’t afford to be sick, and would somehow have to work through the entire
term of chemo.
“How are you going to do that?” he asked. “You’ll need your rest.”
I didn’t know how I was going to, I just knew I had to. I had worked through adversity and illness before, pulling 100 hour weeks when I had pneumonia, flu, and an excruciatingly painful bout of Bell’s palsy. How I did it was simply one day at a time, one patient at a time.
I had to work through chemo the same way, one patient at a time. Each morning, no matter how sick I felt, no matter how hopeless my heart really was, I had to perform the aria from the opera Pagliacci: Vesti la Giubba. Though most Americans know the tune better as the “Rice Krispies song,” this is the famous aria of the laughing heartbroken clown and the title means “wear the suit.” Pagliacci’s heart is broken, but he has to put on his clown suit and perform. That was exactly how I planned to get through the most grueling ten months of my life. One day at a time I planned to vesti mi giubba – my scrubs– hang my stethoscope around my neck, forge a smile, and pretend, no matter how I felt, I had nothing in the world to worry about except the patient in front of me.
My chemo doctor probably thought I was underestimating the devastation the chemo would create to my body as it tried to “kill cancer, not kill patient.” Or, perhaps he thought I was overestimating my willpower to tough this out. He very likely thought I was in that one stage of grief I never languished in, denial.
I was, however, not a wide-eyed novice unfamiliar with the medicine. I knew the drugs. I knew the biomechanics of cell division. I knew how the chemo would kill off good cells as well as bad. I knew that my white cell count could fall so low, that my patients and the bacteria or fungus they carried could kill me. However, somehow, some way, I had go through the chemo and continue working. Giving up one meant giving up the other.
I promised him I would get as much rest as I could. My schedule now was much easier than it had been when I ran the emergency clinic. I only worked fifty-five hours a week now, had Sundays off, and I was able to get a full night’s sleep. If I really got sick, I would just close for a few days, something I could never have done at my 24/7 previous clinic.
“OK,” he told me, as he dismissed me from the exam room. “Get ready. Chemo starts Monday.”
I joined Steve waiting in the lobby, trying not to let him see the marks from the emotional lashing I had just gone through. I could not, could not, let him know the grim statistics Dr. M had given me. I had promised Steve I would never lose hope and never quit fighting until the day he came to me and told me I could stop. Had he known that I had less than a 20% chance of making it through this alive, he would have never recovered. I needed him to hope, because, frankly, I could not.
“What did he say?” Steve asked.
Time for Pagliacci, early matineé. I put on my winter coat and forged a smile.
“Don’t worry. Everything’s going to be good,” I said. “It’s all about the chemo.”