CHAPTER 2
“The cancer has spread.”
The doctor’s words hung in the air like an oppressively humid day, sucking up all the oxygen in the antiseptic examination room.
“The cancer has spread.”
This was the culmination of a three-week journey that had begun with Ruby’s first-ever visit to a dermatologist. The initial tests had come back positive for cancer—melanoma. Only we didn’t know how bad it was or how much it had spread throughout her body. We were referred to a dermatological oncologist, who scheduled Ruby for a CT scan. Then we had to wait.
Ruby sleepwalked through the days following her initial diagnosis. We simply couldn’t wrap our heads around what it really meant for our future. Make a checklist for a nervous breakdown, and we’d have all the symptoms. Panic? Sure. Crying easily? Of course. Upset stomach? Exhaustion? Check and check. We were trapped in a brutal, unrelenting anxiety loop.
“Shit, shit, shit!” Ruby would sometimes blurt out. “Shit, shit, shit!”
Dr. Lisa Adams, our pale-skinned dermatological oncologist, perhaps a decade older than Ruby, revealed the results of the CT scan without being overly emotional.
“I’m afraid there are some suspicious nodes in the groin,” Dr. Adams said to Ruby.
In my mind “suspicious nodes” had the ring of a death sentence. Ruby gripped my hand tighter. The diagnosis threw me into a dull fog. I was too numb to process everything, and much of what Dr. Adams said next passed right through me.
“Unfortunately, the cancer has spread. . . . The melanoma appears to be stage three. . . . We have the results of the biopsy from the growth on your foot. . . . Cancer is caused by a BRAF gene mutation . . . treatment available . . .”
Her words tumbled about my head. I sensed the coming hurricane of information overload that would carry us off to a foreign country where we didn’t speak the language—an alphabet soup of terms, treatments, and genetics.
“I’m twenty-eight years old,” Ruby said to Dr. Adams. “I’m too young to have stage three cancer.”
“I wish that were the case, Ruby,” Dr. Adams said. “I really do.”
The cancer has spread.
“Am I going to die?”
“This is a treatable condition,” Dr. Adams replied. “We’ll start the drug treatment first and gauge how well the nodes are responding. If we do get a response, then the nodes have acted as a ‘marker’ that will help us determine how responsive to the drug you’ll be. If you don’t respond to the drugs, then a surgical procedure called a node dissection becomes essential. Surgery would likely follow even if you do respond completely to the drug, as there would likely be some microscopic cancer left in the nodes. Does that make sense?”
If it did, Ruby didn’t say. She clearly had other things on her mind. “What’s the survival rate? Please! Am I going to die?” Ruby’s last question was punctuated by a choking sob.
I embraced my wife, shuttering my eyes to hold back my own flood of gathering tears. Ruby needed me to be strong for her, present and positive.
We were talking about the vacation we going to take once we had this thing licked. Ruby was hinting at starting a family. Now she’s asking about living—survival rates! It’s not fair. No, this isn’t happening to us. It’s not real. This is not happening!
“I love you,” I breathed into my wife’s ear.
God, I love you so much.
Adams waited for the right moment before answering Ruby’s questions.
“We’re going to do everything we can to make sure that doesn’t happen,” said the doctor. “And I’m going to help you every step of the way. The tough part is that I can’t beat your cancer for you. We’re going to have to battle this together.”
“How did it progress so fast?” Ruby asked. “Can’t we just cut it all out? How did I get it on the bottom of my foot? What’s the drug treatment?”
Dr. Adams listened intently to Ruby’s rapid-fire questions. She studied everything about Ruby’s gestures, vocal intonation, and expressions, much like a psychotherapist conducting an assessment of a new patient. I figured that in addition to answering Ruby’s specific questions, Adams needed to ascertain how much information to share and what should be revealed in future discussions.
“Unfortunately, there is no curative therapy for most metastatic cancers—that is, a cancer that has spread to other parts of the body.”
“What do you mean by no curative therapy?”
“We need to focus on the containment strategy I outlined for you.”
“Why?” Ruby asked, pleading really. “Why is this happening now?”
“I wish I could say, Ruby,” Dr. Adams said. “Most skin cancers are not hereditary, but there are certain cases where a parent with a certain type of skin cancer increases the average risk of getting a cancer yourself. Still, I would lean toward ruling out familial melanoma—”
“My mother basically lives in the sun,” Ruby said. “She’s never had any problems.”
“But I couldn’t claim that as fact,” Dr. Adams said, finishing her thought.
Adams referenced Ruby’s file. I suspected she was double-checking the family history—what little Ruby knew of it, anyway. In those pages, Dr. Adams would find reference to a father who died of a heart attack when Ruby was eleven, a few uncles and aunts who suffered a variety of ailments, none of which were melanoma or cancer of any kind.
“Even with further testing, I can’t promise that we’ll be able to figure out if a specific environmental factor is to blame for the mutation. And speaking honestly, the why isn’t as important right now as the what, meaning what we are going to do to fight your cancer?”
“I want you to tell me everything about my cancer,” Ruby continued. “Don’t hold back. I mean it. I want to know it all.”
Ruby sounded definitive. I interpreted Dr. Adams’s change of expression as one of pleasant surprise. She didn’t know Ruby’s fighting spirit. If one thing gave me hope, it was my wife’s tenacity and willpower. Both, I believed, would be as healing as the cancer was deadly. Ruby could get a Christmas present in summertime and wait six months to open it. She can keep the one-cookie promise, and I’ve never once heard her hit the snooze button. Yeah, she’s got willpower, all right.
Dr. Adams spoke for fifteen uninterrupted minutes. She explained the gene mutation in greater detail and walked us through the recommended course of treatment. She spent some time talking about the node dissection and what Ruby should expect after her surgery. We listened with rapt attention. My head would occasionally nod my understanding, while Ruby’s didn’t move.
“The drug therapy I’m going to recommend has been highly effective in treating your type of cancer.”
“What’s the survival rate?” Ruby asked again.
Somehow, the doctor managed to skirt that question. “I really can’t say definitively,” Adams replied.
“Best guess,” Ruby said.
“A lot of variables go into factoring survival rates.”
“The number, Doctor, please,” Ruby said.
I could tell Dr. Adams swallowed this part of her job like bitter medicine.
“We think of survival rates in terms of a five-year time span,” Adams said. “But this doesn’t mean the patient has become cancer free within that time period. It could mean they’re now disease free, or it could be they’re progression free. What it means is that five years after they start treatment, they’re still alive.”
“My number.”
“Twenty-five percent,” Adams said. “If we don’t start treatment right away, that number could drop precipitously.”
Now it was my turn to swallow that medicine.
Twenty. Five. Stinking. Percent.
“Here’s where it gets a bit tricky,” Adams said, speaking in a voice that suggested “a bit” meant “a lot.”
I could see that Ruby was still trying to digest the 25 percent figure.
“How could it get more tricky?” she asked.
“The generic form of Verbilifide, the drug therapy you need, is currently out of stock.”
“When will it be back in stock?” I asked the question as if the drug were some part that could be ordered and picked up at Home Depot.
“I can’t tell you that.”
“What the heck! Why not?” Ruby asked.
“It’s just unknown,” Adams said, her voice tinged with frustration. “The manufacturer sent out an alert last month. They’re way behind on supply orders. To be honest, they’re not the only ones. Call any oncologist and they’ll tell you that we’re currently in the midst of the worst shortage of generic cancer medications that we’ve seen in decades. It’s a historic supply crisis with tremendous repercussions for both patients and their doctors.”
“What do we do?” Ruby asked. “My survival hinges on starting treatment right away!”
“Verbilifide isn’t in short supply, just the generic,” Dr. Adams said, sounding reassuring. “We’ll have to prescribe you the brand name, that’s all.”
“So that’s not a problem, then,” I said.
“The generic costs a fraction of what Verbilifide will cost for a full course of treatment.”
I asked, “Meaning?”
“Meaning it will cost around three hundred thousand dollars.”
Ruby and I both looked sticker shocked. It’s bad enough confronting a cancer diagnosis, but to think about the financial implications conjures up the old “insult to injury” adage.
“I guess we can’t just go to CVS to pick up the drugs,” I said.
Ruby laughed, which almost made me cry.
“No,” Adams said. “I’ll need a week to order Verbilifide from a specialty pharmacy. They’d have the drug delivered to my office, and you’ll need to pick it up here. Just so I’m clear, you’re not worried about the cost?”
I shrugged off the number.
“Why worry about that?” I said. “That’s what health insurance is for.”