She called to let me know where she was. She’d moved into a small apartment with my friend Sherri’s son, Tyler. She said she couldn’t live with my tyrannical rules.
Tyler was three years older than Brittany. At twenty, he had a job at a liquor store and was drinking too much. Tyler and Brittany had grown up together and had been like brother and sister. I knew that Tyler would never want Brittany to be hurt or in danger. However, he wasn’t in a good place to ensure this for himself or Britt.
Coming home from work was lonely but peaceful. Now that Britt had moved out, Gary spent weekends with me. We were closer than ever, but Britt was my main concern. Any plans that Gary and I might have were on the back burner as I struggled to keep my daughter on a purposeful path. My overwhelming worry and tension about Brittany colored everything; even the blossoming love that I felt for the kindest man I’d ever met.
Gary and I asked Brittany if she’d like to come over for dinner, and she accepted the invitation. We had a pleasant evening. I’d put some bags of Britt’s makeup items and more clothing by the door, thinking that she might need them.
As she left my house that evening, I heard her talking on her cell phone. “My mom had some of my shit by the door. I don’t think she wants me to come back.”
It hurt to hear her say that, but there was some truth in it.
Sherri and I stayed in touch. She told me that Brittany and Tyler were an item now.
“What? No way,” I protested. “They’re like brother and sister.”
“I know, Deb. But you need to be able to hear this. Tyler and Brittany are sleeping together.”
I wanted to stick my fingers in my ears. Too much information! Tyler was like a son to me, and I loved Sherri in a forever way. Tyler had been a difficult child to rear. He had learning issues and anger issues, and now he had addiction issues. I loved him, but I did not want our children living together.
Brittany called and wanted to have dinner again.
“Tyler and I saw some really nice apartments right across from the school,” she said. “Tyler has a DUI, so he can’t drive. The apartment is really nice. I liked it a lot. But Tyler won’t keep it nice. We’re always arguing about keeping our place tidy.”
This was a shock. Brittany had never cleaned up after herself at my house. It was one of the things we’d argued about. I asked Britt if she’d thought about a one-room studio apartment, and she asked me to look at some with her.
The first one we looked at was a second-story studio in a group of apartments built in the 1940s. Tiny. No central air or heat, but lots of light. It was within walking distance to a pretty harbor. “It’s like a ghetto Melrose Place.” Brittany grinned at me. “I love it!”
These little places were the most affordable housing in Orange County. They went fast, so I signed the lease right away.
Downstairs from Britt’s new apartment was an Italian restaurant, and we stopped in to celebrate with some appetizers. Brittany was anxious to begin planning her move. I told her she could have her double bed and the family room love seat. I told her the best way to get furniture was at thrift stores. That evening, one of our greatest common interests began. We became a thrift-shopping team extraordinaire.
My daughter made that rudimentary studio into a warm and inviting little home. We found all kinds of awesome deals at secondhand stores, and she reveled in the ability to decorate on a budget. The smell of bread baking and Italian food cooking wafted up from below. Soon Brittany knew everyone at the restaurant. Girlfriends were invited to spend the night and make dinner. Often Gary and I met her at the restaurant. Her microbiology class was a killer, but so interesting. Every meal we shared with her, she informed us of new cutting-edge science. She said her instructor was unbelievably good, and she’d joined a microbiology study group. “Two guys are vying for my attention.” She smiled. “Geeks.”
My daughter was healthier and happier than she’d been recently, and we were getting along better than we had in years. Brittany made dinner, and Gary and I brought wine. We sat talking and laughing in the warmth of the plug-in heater. Gary agreed that with her newfound autonomy, Brittany seemed to flourish.
15
It Can Always Get Worse
February and March 2014, Ten Weeks Out from Craniotomy
The human person cannot face up to a bad outcome, that’s just the deal.
—Barbara Kingsolver, Flight Behavior
It took many emails and conversations to mend the rift over graphic conversation while dining. I called Britt to apologize and told her that I would try to listen to whatever she needed to say, whenever she needed to say it.
I spent eight to ten hours a day researching astrocytoma tumors. Gary was in his office doing much the same through phone calls. We were planning to visit Britt in her home in a week. I filled a cardboard file box with printed material. I learned a great deal about brain tumors, specifically glial astrocytoma tumors. The standard treatment was to cut, burn, and poison. Surgery first, then radiation to kill as many leftover tumor cells as possible, often done concurrently with chemotherapy.
However, radiotherapy did not cure massive diffuse brain tumors The goal was to slow the cancer down. Unfortunately, radiation kills healthy brain tissue along with tumor tissue. Because Brittany’s tumor was large and they’d resected less than 50 percent of the tumor tissue, radiation would have to be done on a large area of her brain. The side effects for whole-brain radiation included hair loss, nausea, vomiting, extreme fatigue, hearing loss, memory loss, problems with speech, and skin and scalp burns. The radiation would also cause brain swelling and possibly seizures.
Chemotherapy interfered with cancer cells’ ability to reproduce. The problem was that chemotherapy didn’t discriminate between healthy and diseased brain cells, either. Many adverse side effects accompanied it, although some patients seemed to tolerate chemo for the brain better than others.
The prognosis was poor, especially for those who had only part of their tumor removed in surgery. As I read, I began to understand why Dr. Chang had completely stopped talking about a five-year survival. The extent of surgical removal of tumor matter was clearly related to prognosis. Brittany’s tumor resection had been hampered by the infiltrating fingers of the tumor entwined in her brain. We would definitely know more when the histology report came back. A neuropathologist was reviewing frozen tissue from Brittany’s craniotomy.
I read one very disturbing article written in December of 2013, printed only weeks before Brittany was diagnosed. It indicated that when treated by chemotherapy (temozolomide), some gliomas actually transformed from low-grade gliomas into deadly glioblastomas. Glioblastoma patients had a median survival rate of twelve to fifteen months. Alarm bells rang in my brain. I couldn’t believe what I’d just read. It was terribly disturbing to find out that chemotherapy might make the tumor jump to a higher grade and grow faster. Another article pointed out a growing body of evidence that cancer surgery itself can increase the risk of metastasis. It would appear that cut, burn, and poison—the “gold standard” treatment that doctors had to offer—was fraught with perils that weren’t fully discussed with the patient. As I read, I felt that what we knew about treating brain cancer had not changed much since the days of wagon trains. I felt that we were in the wilderness with only rudimentary tools to assist with survival.
With radiation and chemotherapy both looking like terrible treatment choices, I started looking for other types of approaches. The most promising seemed to be at Duke, UCLA, the Mayo Clinic, and UC San Diego. They ranged from using the polio virus to experimental vaccines, immunotherapy, and even cannabis and the patient’s own urine.
I read about what MRI scans could tell doctors about brain tumors. I found a lot of things that no one had mentioned to us. Soon thereafter, Brittany wrote a strong email to Dan and me. She indicated that Gary’s search for a miracle cure and his suggestions of things we might try had not been helpful in the least. She also stated that she loved Gary, but
that he was no longer free to weigh in on decisions having to do with her disease or death at all.
In the email, she told Dan and me that Plan A was to go to Oregon and die peacefully. If for some reason she lost her ability to speak and there needed to be a Plan B, she asked for no feeding or fluids and for intravenous painkillers. She said that if she was taken care of by a hospice, to do all we could to make sure that the hospice upped the morphine as fast as possible to not keep her lingering. She also requested that both Gary and I watch a movie entitled How to Die in Oregon. In the email were two articles, one from brainhospice.com, and the other titled “End of Life Signs for Brain Cancer.” Both were detailed accounts of what happened when the brain tumor metastasized out of control and swelling could no longer be controlled. It was grim reading.
I responded with one line: “I have read and saved this information. I understand and support Plan A and Plan B.”
Brittany wrote back that the move would protect her medical wishes, and that at some point, it would become necessary to live in Oregon for her end-of-life plan. She said that Dan couldn’t move, with his job and needing insurance, but that of course he would visit her in Portland often. She also wrote again about her anger with Gary and me for not discussing what she needed to discuss at the table. “I won’t be punished for protecting my patient rights, legal privacy, or just being a scared, terminally ill young woman, who needs to talk about the very real ramifications of my hideous cancer, especially 1 month post craniotomy and only weeks after diagnosis. . . . I am just very sick and totally frightened and doing the dang best I can.”
As I read this, I realized that we were going to have to buck up and hear whatever graphic information that Brittany wanted to share. We might need to just push the food away and listen. Over the following nine months, there were many meals that we pushed aside and didn’t finish, but we never again tried to restrict mealtime topics.
In the meantime, Dan’s mother, Carmen, had taken Brittany to speak with her oncologist. “Some of my histology is back,” Britt said on the phone. “I don’t have a good marker on MGMT. This means that if they tried to use chemo on my cancer tumor cells, the chemo would not be able to knock the cancer back. Also, a combined chromosomal loss of 1p and 19q is associated with a more favorable prognosis for use of chemotherapy. Of course I don’t have the combined loss, and therefore that is another reason I’m not a good candidate for chemo.” Brittany spoke fast, and the terminology wasn’t familiar.
“I don’t understand. Did you understand what they were telling you?” I felt like a non-swimmer grabbing, clutching, and grasping at nothing, just air, as I sank thrashing and kicking into murky water.
“What’s not to understand? I’ve already been given a death sentence. They can’t cut the monster out. It’s like an octopus with tentacles embedded in my brain. So now they’re looking at the exact genetic tissue for clues about whether the tumor can be slowed with chemo poison. Lo and behold, that option sucks, too! So next they’ll be dragging me in and telling me I need to sign up for radiation five days a week for six weeks. Now they’ll want to burn it.”
“I thought they’d already agreed that radiation wasn’t a good option for a tumor as diffuse as yours.”
“They got nothin’, Momma.” This time I heard her voice crack, but she quickly recovered. “That’s the cold hard truth. They don’t know what causes brain cancer, and they don’t know how to cure it. Brain cancer is such a red-headed stepchild. There’s no money in it. Shit, if I had breast cancer, lung cancer, colon cancer, or even leukemia, I’d be better off. Those cancers get more money for research.”
“Then we’ll leave UCSF. We’ll go somewhere else.” I tried to sound positive and strong.
“It’s the same everywhere. Cut. Poison. Burn. Everywhere we go. This is what they will say—in nicer terminology.”
I realized that Brittany and I had been reading the same information. We’d both been researching, and we knew the cut, poison, burn drill.
I started to say something, but she interrupted. “It was nice of Carmen to go with me. I want you to be here when I go for my meeting with Dr. Berger and when I get my MRI. If the meetings go poorly, promise me you won’t try to blow smoke up my ass.”
“I promise I’ll do my best.”
“No one is going to burn my brain. I’m never allowing them to do it. The therapy is worse than the disease. I’m not going to allow them to damage my cognitive ability. I’m not letting them destroy the quality of the little life I have left.” Britt’s voice rang strong, with no hint of self-pity.
I, on the other hand, was crying silently on the phone, trying to make sure she couldn’t hear me. “I’ll stand behind you, and I’ll defend your right to choose,” I said in a strained voice.
In late February, Gary and I flew up to Dan and Brittany’s. We had a pleasant weekend with them, and tried not to think about our appointment with Dr. Berger. In our hearts, Gary and I hoped that the doctor would be telling us about a second surgery that would remove much more of the tumor, buying more time. Gary was still looking at other countries for a potential cure or promising treatment. In other words, we were still in denial.
On Sunday, Brittany and I made plans for a trip to Alaska. We were focusing on her desire to see and do as much as she could before she died. I decided to be an active part of this agenda, because with or without me, she was going to do her thing. I desperately wanted to be with my girl.
On Monday we drove to San Francisco to meet Dr. Berger, the surgeon who’d advised her to have the first craniotomy with his colleague Dr. Chang. We thought the plan was that Dr. Berger would do an awake craniotomy when he returned from overseas. Gary and I felt like the scarecrow and Dorothy in The Wizard of Oz preparing to meet the wizard. Dr. Berger stepped into the examination room. He seemed surprised at how beautiful Brittany looked so soon after surgery, and how intelligently she presented herself. My daughter wore her newly cut hair softly curled, her incision concealed.
As the discussion deepened, it became clear that he had no intention of operating on Brittany. In fact, he was recommending that she begin a course of chemotherapy. He said that he wouldn’t operate until chemotherapy had shrunk the tumor’s tentacles. We didn’t understand this statement at all. We hadn’t read or heard of the tentacles of astrocytomas retracting. All we could think was that the “two surgery plan” had just been an effort to get Britt to have surgery with Dr. Chang. We wondered if Dr. Berger had known that he’d be pushing chemo before a second surgery.
Brittany informed him that she was very aware of her genetic markers. “Even my oncologist hasn’t recommended chemotherapy,” she told him. “In fact, UCSF has an article published that indicates that temozolomide, the chemotherapy agent most often used with gliomas like mine, actually causes the tumor to transform from low-grade to highly malignant glioblastoma more than half the time.”
The doctor stood his ground, saying that despite her genetic markers, a wait-and-watch approach was not wise.
“Roughly what percent chance do you think that I have of the chemo shrinking my tumor?” Britt asked. He replied that there was less than a 30 percent chance that chemo would be beneficial in any way. However, he still recommended trying it.
“And what would you guess is the percent chance that chemo will shrink the tumor enough, wither the tentacles sufficiently, that you would consider doing an awake surgery?” Brittany’s chin jutted forward in a way I knew well.
He replied that if the chemo did anything, the chance of it being so effective that he would consider an awake craniotomy to resect more of the tumor would be quite low, a single-digit percentage. He added that there were unknown factors.
“Have you ever recommended that a patient consider seeking end-of-life care in Oregon?” Brittany’s dark eyebrows arched upward and she watched him intently.
I thought the doctor seemed uncomfortable when he said that he had never advised that, and that he didn’t believe it was a viab
le course of action.
Britt straightened in her chair. She smoothed a hand over the leg of her black pencil slacks. “Have you ever stayed with a patient all the way? After you guys have opened up the patient’s skull and done a partial resection?” Brittany’s eyes were green lasers.
The doctor said that he prescribed pain medication, and that he didn’t leave a patient to suffer.
“No, I mean: Have you been there when they can’t talk anymore? When they become belligerent or violent? When they can’t remember their family? When they moan and grimace in their sleep?” Brittany paused and drew in a big breath. “When they go blind? When they are partially paralyzed? Where are you then? Operating on another patient, right?”
Dr. Berger began to say that he referred patients to hospice care, and then he trailed off. He said that he would like to focus on the benefit of treatment, and that it was premature to be talking about this.
“Is it?” Brittany said. “I have terminal brain cancer, and no one wants to talk to me about how I will die. Well, I can tell you one thing for sure. I’m not dying in California. And I can tell you I’m not spending the last days of my life sick on chemotherapy that hasn’t got a hope in hell of saving my life—or even of buying me a significant amount of time.”
In the car on the way home, my husband said something completely inane about Dr. Berger’s being proactive. Oh my God, I thought, he really isn’t present. He’s shutting out what is happening, and concentrating on what he wishes was happening. I wanted to wring his neck.
I sat thinking of the hopes that were dashed by the great and powerful wizard of brain surgery. Brittany had pulled the curtain back to reveal a man who seemed to be grasping at straws.
Brittany’s last bit of confidence in medicine (and I hadn’t thought she had any) slipped away that day. I could feel her hopefulness crashing over a waterfall and dashing on the rocks below. She never admitted it out loud, but it was obvious that she had pinned some trust in Dr. Berger’s plan for doing an awake craniotomy. After that day, her go-to emotion became anger, which I knew was to cover her fear. The great Oz had spoken. Like Dorothy, my first instinct was to tell him that he was a very bad man. Maybe, like the Wizard of Oz, Dr. Berger was a very good man; just not a great wizard. We felt that the meeting couldn’t have gone much worse.
Wild and Precious Life Page 14