Chapter 19, Ojai, 2015

ROAD 31

Spring has sprung, and Carolyn continues to tough it out with her cancer treatments. Her friends, Larka and Jenn, travel to Ojai. Our friends, Lenore and Ross, visit from Canada. Carolyn is enjoying the warmer weather and often asks to go walking on the beach in Santa Barbara. Growing up in the Midwest, so far from the ocean, makes the beach endlessly enchanting. When Ojai is hot, we head to the beach. Carolyn and I love to sit in beach chairs, watching the water. The sound of the waves hitting the shore is calming…“swooosh, swooosh.” Sometimes her friends, Carl, Freddie, and John, meet us in Santa Barbara. They like to talk about art and about the east coast. They are all west coasters now but met when Carolyn owned an art gallery in the Chelsea area of New York City. Carolyn loves to eat Mexican Food at Cava, not too far from her favorite Butterfly Beach, before returning to Ojai. Her friends love to order her margaritas, which she never refuses. At one doctor’s appointment I ask her neurologist, Dr. Rudnick, if liquor and wine are okay. “Yes,” he says. “And it should be top shelf.” I wonder if he knows something we don’t know. Carolyn and I often talk about this because he is always positive, even when looking at x-rays that look worrisome. I realize these are not average doctors. They are still learning about this rare disease as well. They provide hope for their patients while they try to fully figure out invisible answers. Carolyn often asks me to send pictures of her recent x-rays to Steph, a brilliant childhood friend, currently a radiologist in Chicago. I do, but Steph is a realist, so I don’t always tell Carolyn the full story of Steph’s predictions. On the most recent x-rays, she says she sees a “satellite tumor.” This means there is most likely a larger one forming somewhere we can’t see on the x-rays. Carolyn is fighting so hard with her continual treatment and vaccines. I understand the need to encourage her and share in her hope. I say nothing.

Matson knows his mom is sick but has been distracted by developing an app for iPhone called Turtle Friend. When Carolyn was well, she and Chris took Matson to Nicaragua to see the work of an organization called Paso Pacifico. Sarah, the director of the non-profit and mother of Matson’s best friend, Jonas, invited them to see the annual beach hatching of beautiful but endangered sea turtles. The trip was a highlight of Matson’s youth, and after leaving, he wondered if it were possible to see what the turtles were doing now that they were hatched and out to sea. Chris, Matson, and Jonas have become engaged in figuring this out. They spend time together, creating something wonderfully new and technological that tracks sea turtles once they hatch. Carolyn loves to hear that people are supporting Matson and Jonas in this endeavor. Chris launches a Kick Starter Campaign to raise funds to build the technology the boys need. Carolyn has me write Facebook posts on her page enlisting financial support for Matson and Jonas’ project. Their schoolmates are supportive and throw a launch party at our local pizza place. What starts out as a pizza fundraiser, raising $512, grows into a whole campaign, eventually raising over $29,000. I am so happy for the boys. Matson beams from ear to ear when telling people about the new app invention. Even more so, I am happy for Carolyn, who has gotten to see her son’s success despite his young age. It dawns on me that even if the best scenario happens with her treatment, she will miss so many of her beautiful boy’s life achievements. The local paper runs an article on the boys. I keep it to frame. I make a folder for Matson and put it in the cupboard of keepsakes I keep for Fliss. This is my job now.

Four months of hardcore chemo are behind us. Eight months to go. Carolyn’s longest client and best friend, Alan, visits from Minneapolis. He appreciates great art and great food. He and Carolyn love to travel. Alan has perfected the art of pessimistic wit. The glass is always half empty but in a humorous and often highly entertaining way. He tells hilarious stories about growing up in Milwaukee and even better stories about working in the corporate world for thirty years. I have come to think of Alan as Carolyn’s brother. She stays with him often when she visits clients in Minneapolis, and Alan stays with her in Ojai when he needs a weekend off the map. He is smart. His heart is incredibly generous but not on his sleeve. Alan would describe himself as the opposite - a regular Jewish guy from Milwaukee who is moderately knowledgeable and mostly bored with everything and everyone. When I think of him, I think of him either in running clothes after a workout or in khakis and a button-up shirt at a museum. One time, to support Alan during the Twin Cities Marathon, Carolyn made “Go Al” signs she held up every few miles. You never get the feeling Alan is comfortable, but after you get over that, he’s the best person to sit next to in the peanut gallery.

“The best thing about a visit from Alan is that there is no crying or cancer shit,” says Carolyn. She’s right. Alan talks to Carolyn about things she likes - the art world, friends they have in common, the Bacon of the Month Club Carolyn signed him up for two Christmases ago, or travel plans he is making. It isn’t until we’re alone that Alan brings up Carolyn’s current condition.

“There’s no hope, right?” he asks, after two glasses of Carolyn’s favorite red wine, Road 31.

“Did you Google it?” I respond. Alan sighs.

“Then why is she going through with all this shit?”

“She says for Matson, Alan. She wants him to grow up knowing she fought to stay alive as long as she could for him.”

“I get it,” he says.

“Yes,” I answer. “But I also think she really believes if she can just stay ahead of death for five years, one of these brilliant doctors of hers will have found a cure.”

“What do you think?” Alan asks.

“I think you should say everything you need to say to Carolyn in person while you’re visiting.”

“Shit,” Alan sighs as I open another bottle of Road 31.

After Alan leaves, Steph’s conclusion about Carolyn’s satellite tumor proves to be right. Carolyn falls in the driveway while I am in New York on a trip with Fliss for her birthday. She suddenly has limited feeling in her right side. Her vision is starting to double. Tests conclude there is a new tumor. Dr. Yu’s vaccine made especially for Carolyn has not worked. I’m at the appointment with Carolyn and Chris when Dr. Rudnick tells us the news. I sit, stunned, as the doctor says there is the option of having another brain surgery, and he begins to list the possible aftereffects. These include permanent paralysis on the right side of her body and further loss of vision. I watch, detached, almost as if I’m dreaming this moment in time. Chris talks about surgery dates with the doctor. Her steroids were upped again after her fall, and she has made it clear she wants to hear all of her options at this appointment, so I say nothing. I’m fuming. The possibility of a third surgery? Are they all crazy? Will we keep opening up her head until she is paralyzed, blind, and unable to function at all on her own? I can’t get my mind around their denial of this horrific reality. The miracle vaccine – her only hope we were told-has not worked. This is NOT working. NOTHING is working. She is going to DIE. I know this, at this moment in time, with surety.

I am silent on the drive home. Rufus Wainwright plays faintly on the stereo. When we get home and I am alone with Carolyn, I manage to find the courage to tell her what I think. I remind her she made me promise, after the first surgery, when her pathology came back, that I would tell her when I thought it was “enough.” I tell her I know she never would have wanted to be paralyzed on one side, or to be blind.

“You want me to die,” she says.

“No Carolyn, I know you are dying. I don’t want to see you suffer even more.”

Despite my pleas and tears, the third surgery is scheduled. This is now what she says she wants. Chris does not oppose her. Carolyn, I realize, has slowly been leaving us. If she isn’t fully here, I wonder, where is she?

My best friend, George, calls. He can’t sleep. He lives far away in Salt Lake City. His mind can’t turn off thoughts of Carolyn. He’s a few hours from a Race for the Cure – a walk/run he is doing in her honor. This is one of the many acts of generosity we are witnessing from friends. I wish a fucking walk could make me feel better, but I’ve hit a new low. I can’t do anything. I can’t eat. I barely sleep. I continue to overload my schedule so I don’t have to think. It’s fucking Mother’s Day the next morning. I write Carolyn a note on her Facebook wall and post some beautiful photos of her with the children:

“Happy Mother’s Day to my Super Hero Big Sis who has not only been a second Mother to me but to my daughter. The depth of love I feel for you is unimaginable and unexplainable to others. You are my heart.”