“Are you going to write about this in your blog?” asks Alicia.
A simple little word can carry so much freight. “This” does not mean lunch at Red Robin, where Sabrina, Alicia and I, the three sisters, are sitting at one of those elevated booths that makes it feel as if everything that happens here is extra important.
Alicia is having a milkshake and a salad. The salad is a surprise. Lately it’s just been clam chowder, when she can eat anything at all.
“This” means the cancer that has come upon her like a speeding car with no brakes. “This” means all of the unpleasantness of our present and near future. “This” means the fateful meeting with the oncologist.
After three consecutive-day visits to the emergency room for pain, the hospital finally allows Alicia to stay, so they can give her IV drugs for pain while they figure things out. A couple weeks in, I am with Alicia at the hospital. The oncologist is supposed to come by …sometime today. I am afraid even to use the restroom lest I miss it. Dilaudid messes with Alicia’s mind and we both know she cannot have important meetings alone.
Dr. Guy is compassionate and direct. The chemotherapy will be for pain management. It will help temporarily, if at all. Her cancer is extremely aggressive. It spread to her liver during the few days of assessment. Ever emblazoned in my consciousness is his phrase: “not survivable”
Alicia takes a few minutes to regain her composure: “Will I be alive in six months?”
“We will do our best.”
To me, that clearly means: “no.”
“This.” Alicia means all of it.
“I haven’t given a thought about the blog,” I say, having completely dropped out of regular life when cancer hit. My Red Robin hamburger doesn’t get much attention. “Right now I haven’t been writing anything. We’re all in emergency mode.”
But still, I always wonder about how events will work in the telling, or the retelling. Where is the central story line? How to show not tell? As my favorite writer Jessamyn West said, “I write to find out what I think.”
For the past week we have known it is cancer. But there is cancer and then there is CANCER.
Alicia’s is CANCER. Sabrina comes to Kaiser Medical Center, flying in from work, all of us just crying for a while there in Alicia’s hospital room.
Alicia, Sabrina and I all have fresh pedicures—for a few minutes there Alicia thought she would be having surgery and wanted her toes to look nice. I take a picture of our toes—the only part of us fit for viewing–and post it on Facebook. “Such a feminine thing to do,” says Sabrina.
The hospital offers Alicia a chaplain. Sabrina and Alicia discuss it. Her primary tumor is 11 centimeters. “Maybe when it gets to 12 centimeters,” she says, “I’ll see the chaplain.” Chemotherapy won’t help; we fight cancer with humor.
A few days later the tumor near her kidney is 12 centimeters. Plus in her liver, plus “dimpling”—ie, destroying—of lymph nodes in her back.
“I don’t expect you to be my nurse,” Alicia assures Sabrina.
Then she turns to me, “And I don’t expect you to be my nurse.”
Who will be Alicia’s nurse?
No matter what Alicia says, Sabrina and I know how this is going to go. We’ve got experience. It’s just nine months since Mama died from lymphoma.
We know about hospice, the rules for paid caregivers, the side effects of morphine, the brutalities of dealing with physical care, emotional pain, and bureaucracy…all at once, while still making sure there is milk in the fridge, toilet paper in the bathroom, and the lights stay on.
This is a whole new misery. And yet there is nowhere we’d rather be.
“You have a good way of writing about difficult emotional subjects,” says Alicia, “I think you should write about this,” she pauses, “someday.”
Alicia died in her bedroom in Lincoln, California, three months ago today, at 54, precisely three months after her first visit to the emergency room.
Although we had lots of help, some paid, some volunteer, Sabrina and I became Alicia’s nurses, her cooks, chauffeurs, her everything. Alicia’s beautiful friends—“the good fairies” I called them—delivered dinner every day for six weeks. Her sons were very present. Alicia’s youngest son, 18, is now living with one of her friends.
I’m not sure, as Alicia believed, whether I deal well with emotional subjects.
But I can say that I address them. Politeness, for its own sake, or evasion of what’s important, is something I just won’t do any longer.
Life is too precious, and short, to dance around what matters. Am happy to be back here, while still dealing with matters practical and emotional. The sale of Alicia’s home should close on Friday. Life is still evolving, and so is this space. Perhaps less bikini wax and more Chronicles. We shall see. I knew Alicia was really sick when she stopped being upset about Donald Trump.
Even before the cancer Alicia had many challenges. Her first husband committed suicide when their son was small. She raised three boys alone, with very little help, financial or otherwise. Money was a constant struggle, as was maintaining her emotional equilibrium. Depression was always lingering and sometimes overtook her, but she persisted, always with elegance and grace. In her papers we found many thank you letters from grateful parents of her middle school students.
Through the whole ordeal Alicia was never unpleasant, not once, despite huge measures of pain and fear and nausea. We tried everything for the nausea. She popped Zofran and Reglan like M&Ms. Nothing. Fentanyl patch didn’t help. Promethazine gave her scary side effects so we never tried it again. Cannabis didn’t help. The one thing that finally helped was actually a mistake.
Hospice helped us to get a pain pump, which put liquid Dilaudid directly into Alicia’s abdomen. Delivered in that way, it can help with nausea as well as pain. As it turned out, the pump was mis-calibrated, and Alicia was receiving two and a half times as much medication as prescribed. But it’s what she needed. “Everything happens for a reason,” said Sabrina.
Sometimes it’s hard to believe she isn’t here any longer. Twice in the last week, I’ve thought, I need to call Alicia, we haven’t talked in too long. Alicia loved aphorisms and sayings and bits of encouragement. “Grateful” said the plate outside her bedroom. “Fear is real. And so is hope,” read the little sign in her kitchen.
“Live a Good Life,” was on her living room wall, now in Sabrina’s office.
Hanging in Alicia’s powder room was a sign with the Art Buchwald quote: “The best things in life aren’t things.”
That sign is now in my powder room. Sitting there on the counter, as I haven’t had a chance to hang it up.
Alicia would understand.