Chapter 2: Telling the Kids

Be sensitive to your family.

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From: Laura
Sent: Saturday, March 10, 2007 6:43 AM
To: Jennifer
Subject: Saturday

Dearest Jen,

Thank you so much for your daily notes; I can't tell you how much I enjoy reading them. I’m so glad you kept the maternity clothes from your last pregnancy. I bet you look great in your new Pashmina. I've never seen a Pashmina in real life—only on one episode of Friends, when Jennifer Aniston goes out on a shopping spree.

I've been in a flurry of activity since I last wrote. Wednesday I saw the neurosurgeon, Mark, to plan the Omaya. He explained how he was going to neurosurgically insert the Omaya catheter into my brain, so they can deliver chemo directly into the cerebrospinal fluid (CSF), which is the fluid around the brain, around the spinal cord, and in several little water-balloon-like structures in the brain called “ventricles.” Mark is a fabulous surgeon and a likeable guy, quiet with a warm sense of humor, although I told him I preferred our relationship when it was limited to my reading films about the hardware he's putting in other people! He says they used to do about 50 Omayas a year at Memorial, but now they do about 20. He's done a lot of them, and knows what he's doing.

There were two moments in the visit that I didn't like. The first was when he told me how they have to drill a hole in the skull and put the Omaya through the hole and through brain tissue until the tip reaches one of the ventricles. In describing the procedure, he showed me a picture of a brain with a catheter in it. I had never quite realized how far the ventricles are from the surface of the brain!

The second part of the visit that I didn't like was when he told me the Omaya will be there forever. I hadn't realized that. It makes me feel like my life is divided into my world before this Monday (pre-Omaya) and my world after this Monday (post-Omaya). They also have to do this under general anesthesia. So the brain surgery part is intimidating. You know how in your whole life, when people ask you to do something hard, you always think to yourself, "Well, at least it's not brain surgery!" Well, now it IS brain surgery, so what am I supposed to say—maybe, "It isn't rocket science"?

When the neurosurgeon left the room I asked his nurse who's been at Memorial for 36 years if it was OK to cry for a minute and she said it was. She told me that when she used to be a floor nurse, she would tell the patients they were allowed to cry for 20 minutes a day. Apparently there are no restrictions on the time of day you can cry, and you're able to do it all at once or break it into smaller sessions, eg 2 crying sessions of 10 minutes each, or 4 crying sessions of 5 minutes each, or even 10 crying sessions of 2 minutes each. I took her card and her number. That advice may come in handy.

Wednesday night I dragged David to a seminar run by Social Work on how to tell your kids that you have cancer. I wish you had been there to give me the child psychologist’s perspective on the seminar. We met in a small conference room in the hospital. There are three big windows that look out on the Rockefeller campus across the street, but the curtains were drawn. Usually the room is arranged formally, with all the chairs lined up in rows facing the podium in front. For this seminar, it was more casual, with the chairs in a little circle.

David was on my left, and my friend Maureen was on my right. Maureen is a doctor here—last year, when her daughter Julie was 10, Maureen was diagnosed with endometrial cancer, and had surgery, radiation, and chemotherapy. She lost her hair with the chemo, and it’s coming back even a more flaming red than it was before. Maureen is heroic and blunt—the cancer was no match for her. She’s seen it all, tells it like it is, and is fearless—a terrific ally to have in your corner.

The seminar began by us going around the circle and all the participants introducing themselves and telling why they were there. The people at the seminar were a bizarre mix. The first woman on David's left was an inpatient wearing her hospital gown and pushing her IV pole, and she seemed disturbed. She has cancer widely spread throughout her body, but they aren’t sure where it began. Her kids are grown up but she has a 5-year-old granddaughter in her care. She would not stop talking. The social worker finally had to interrupt after she had spent ten minutes on an intensive discussion of every symptom and test she had that led up to her diagnosis of cancer.

On her left was a couple, a man and his extremely pregnant wife, and she was crying hysterically from the moment they walked into the room. I thought she must have something terrible. Turns out her father has cancer, and what they're worried about is, how do they tell their 2-year-old daughter that Grampa is sick? I'm sorry, let's not compete over whose problem is worse, but telling the two-year-old that Grampa is sick just isn’t on the same page as telling your teenage kids that you have cancer. Afterwards, Maureen told me, "I know how they should tell their two-year-old. Say 'Grampa's sick,' and then turn on Blue's Clues, and she'll be fine."

The third couple in the group was a husband and wife in their late 30s or early 40s. The mom, who is fine, lost her mother to cancer at a young age, and hadn't been given complete information. The dad has had adrenocortical carcinoma for three years, very aggressive and not treatable by chemo. He has had multiple recurrences, all treated surgically, so he has had to disappear from home for months at a time. Apparently they never told their son, Billy, that Dad has cancer; when Dad needs surgery, he just disappears in the hospital for a month or two, and they tell the son that it's orthopedic surgery due to a skiing accident Dad had years ago.

Now Billy is 7, and the mother really wants to tell the kid, but the father refuses. In the session, the father kept saying, “Nobody believes that I have cancer because I look so good!” It’s true he looked pretty good—since he's never had chemo he still has his hair, etc.—but facts are facts, and he does have cancer. Finally the wife told her husband quietly, “I think you don’t want to tell him because you can’t admit to yourself that you have cancer. Maybe you figure that if you don’t tell Billy, it isn’t real. Well, it’s real, and he deserves to know, just like I deserved to know when my mom had cancer but I wasn’t given the chance.” Her husband blinked at her, speechless. When he finally tells Billy, I bet the truth will hit them both pretty hard.

The next person was a man about our age whose wife has terminal pancreatic cancer. I gather the wife goes in and out of consciousness, and he doesn't know what or how to tell their four-year-old daughter. She had drawn a picture for her mother, a crayon drawing of the family, but her mother could not recognize what it was. He brought in the picture to show us, holding it with the tenderness that he obviously feels for his wife and daughter. He looked lost and afraid; he clearly loved his daughter very much, but did not know how to help her.

David and I went last. I said I have lymphoma and about to have brain surgery and start chemo, and we are trying to figure out how to tell our teenage kids. He just said, “I’m David, and I’m Laura’s husband.” David is a private person, especially with people he doesn’t know. I knew that sharing the intimate details of his personal life with strangers at a seminar wasn’t his style; he was there for me.

The social worker who ran the meeting was named Tara, which made me think of Gone with the Wind. She was young—maybe in her mid thirties—with short dark hair and sparkly eyes. She told us that she had been working with cancer patients and their families for ten years, and that we would tailor the discussion toward the issues confronting the people in the seminar.

After the introductions, Tara gave us a bunch of "How to Tell Your Kids You Have Cancer" literature. Some of it was geared towards very young kids, which won’t work for Nate at age 17 and Emma at age 14. For example, they had an interactive workbook with a colorful cover and outlines of a female body, so your kids can draw where Mommy’s cancer is; there was also a “his” version with a male body to use if they want to draw Daddy’s cancer. We had the oldest kids in the room, and we were the only ones who were there before cancer treatment started—everyone else had been weaving elaborate webs of deception for months or years.

“Be honest, but don’t overload the kids with information,” Tara explained with a faint southern drawl. “You want to answer their questions, and make it clear that throughout all this, you’re still their parents, and you’ll take care of them.” She emphasized the importance of having time together as a family. In the cab on the way home, David and I talked about how lucky we are to be on the same page about how and what to tell the kids, but we’ve been on the same page for most of the 31 years we’ve known each other. We're planning to tell the kids tomorrow. I wish I didn't have to rock their world. But it would rock their world more if I'm not around, and I have to do this chemo to stick around, and I'm going to do whatever it takes.

Wednesday I had pre-admission tests, including an echocardiogram and an EKG to make sure my heart’s OK. Thursday I went to the dentist for a pre-chemo cleaning of my teeth. Unfortunately they found two cavities, so I had to have them filled. I'm trying to seal up all potential portals of infection—I feel like I'm drawing up the drawbridges of some ancient castle.

Maureen had told me about the wig store on the West Side that she used when she had chemo, and she met me there Thursday afternoon. When I entered the store, a gay cross-dressing hair stylist named J.T., who has won Emmies for hair design, put me in a little room. I was wearing a green skirt, a sweater, and my Ugg boots. My hair is even longer than the last time you saw me, about five inches below my shoulders, curly brown with more flecks of gray than you remember, and kind of wild. J.T. took one look at me and said, "You're a low maintenance kind of gal, huh?" I laughed and asked, "Isn't it enough that I have cancer and need chemo and now you're dissing my hair?"

I tried on a few brunette wigs, and the two I liked best were long—one curly and one straight. I told J.T. I wanted to try a blonde wig because it was my chance to see if blondes have more fun. He said, "Honey, I've been blonde, and trust me, they DON'T." J.T. has named all the wigs—the curly one was Chelsea, named for Chelsea Clinton, and the straight one was Jennifer (maybe for Jennifer Garner?) and actually looks more like your hair than mine. I gather I'll lose my hair about a month after the chemo starts. Then I go back to the wig place, they cut off the rest of my hair, and I go home wearing one of the wigs.

Yesterday, I went on a “field trip” to see our new suite of offices with our office assistant, Lea. The building has been there awhile, but they just finished construction on our suite, and nobody has moved in yet. I had heard the building was a dump, with no security guard. Apparently there was a report of a flasher in the stairway two weeks ago, and when I told one of the administrators, she said, "Great, now you guys will have entertainment." I’ve since heard that the woman who saw the flasher “wasn’t sure he was flashing.” How can you be uncertain about that? It seems to me that if you see a guy in the stairway with his trousers unzipped, there are two options: either he’s flashing or he’s peeing, and neither is something you want a guy to do in your stairway.

Anyway, the suite was beautiful—lots of light, big central space with offices all around, plenty of computers, a small kitchen area, two bathrooms, and a high-tech conference room. Best of all—the office they have planned for me has real windows! It is so sunny compared to our old suite, and much more spacious. I thought I'd never go there, but now I think I will. It will be a beautiful, quiet place to write.

Today Nate takes his SATs—I hope so much for his sake that they go OK. Tomorrow David and I tell the kids, and Monday I get admitted for the neurosurgery. If all goes well, I come home on Tuesday night, rest Wednesday, and have my first chemo on Thurs 3/15.

Got to go—Nate got up and we're going to have the pre-SAT breakfast!

Keep writing—I love your letters.

Love
Laura

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From: Laura
Sent: Sunday, March 11, 2007 11:29 PM
To: Jennifer
Subject: Telling the kids

Hi Jen. Remember the time a couple of years ago, when you cut back on your office hours to make your child psych practice part-time, four days a week, after Sophie was born? You told me then that you thought you had found the right balance, and I told you how few women ever get to say that. I think it’s great that you’re thinking of cutting back on work from four to three days a week after the new baby. This balance thing is a moving target. As soon as you get it right, something in life shifts, like a new baby, or aging parents, or moving to a new city, or an illness, and you have to go with it. I read in an article that people are calling it “work-life fit” instead of “work-life balance” these days, because we now recognize that balance is generally unattainable.

We actually told the kids yesterday, rather than today as we had planned. Nate felt good about his SATs, and we were all together. I was in the bedroom with David and I told him that it felt like the right time to tell them, and that letting them know today will give them a little more time to deal with it before the surgery. It would also let them see me go to bed and wake up at home in the morning, a little bit of normal before Armageddon. David agreed.

After dinner we were all sitting in the family room. You wouldn’t recognize the kids, Jen—they’ve gotten so big! Nate is taller than I am, with sandy hair that always looks a little tousled, an athletic build, and those green eyes he got from David. Emma is petite, about 5’2”, and incredibly chic; her eyes are still that combination of green and blue, half David’s and half mine (all hers). She’s wearing her brown hair shorter now, in wisps around her face, and layers her clothes. I love how she wears jewelry—she’ll have multiple necklaces, all different, but they look great together, and she prefers wearing a different earring in each ear (“I don’t like symmetry,” she explains). I sat on the couch, with Nate on my left and Emma on my right, holding both of their hands. David sat in a chair right next to us. I told them that I have lymphoma, a type of cancer, and that it's in my lymph nodes, bone marrow, spinal cord, and the fluid around my brain.

I explained that I need six months of chemotherapy, which is strong medicine to kill the cancer cells. I said that I was going to get chemo at least every two weeks, and for every other one I have to get admitted to the hospital for a few days. I told them that the chemo will make me look sick because I’ll lose my hair but that just means the chemo is working. I assured them that cancer is not contagious, that they can't catch it, that they didn't give it to me, that it's nobody's fault, these things just happen. I said that they could talk to anyone they liked about it, that it was no secret, and that I had gotten names for each of them of a psychiatrist they could talk to if they wanted. I told them that we were still their parents, that we would take care of them, and that David is the best dad in the world.

I told them that some people with cancer are cured, some get better, some stay the same, some get sicker, and some die. I told them that my hospital and my doctors were the best on the planet, that I was going to do what the doctors told me, and that I would do everything in my power to be in the group that gets better, and that they know how stubborn I can be! I told them that I needed to have a tube in my chest and one in my head for the chemo, and that I was getting admitted to the hospital on Monday for one night to get the tube in my head. I reminded them that their Aunt Laura survived cancer, and so did their Grandma. And I repeated what I said to my beautiful sister-in-law when she was diagnosed with cancer: it sucks but we'll get through it. She did, and so will we.

David didn’t say much during the whole exchange, but he was there, quietly lending support for all of us. His response made me think of our wedding in his parents’ house on Long Island. It was time for each of us to have a sip of red wine. Even though we had known each other for six years and lived together for two, I was shaking so hard that I could hardly hold the glass. He reached up and steadied my hands for me, so I could have a drink without spilling wine on my dress or dropping the glass. He has always been there, quietly strong. We’re going to need that now more than ever.

Later that night, David and I spoke to each of them separately. Emma wanted details, including a full explanation, complete with diagrams, of where the lymphoma was, where all the tubes were going to be, how many chemos I needed, and what the treatments would involve. Nate just got pale and serious, held my hand, and said, “I love you, Mom.”

The kids have always had their own distinct ways of processing information. I remember a day more than a decade ago when we passed a dead bird on the street while we were walking to school. Emma asked questions: “What is that? Is that a dead bird? Why did the bird die?” Nate became silent and asked Emma to please stop talking about it. Emma deals with her fears by verbalizing them and seeking clarification, while Nate prefers to receive information only on a “need to know” basis. After we spoke to the kids, Emma went into Nate’s room and they talked in private. David and I thought that was a good sign that the kids will help each other through this.

On Sunday we looked at some college application materials with Nate, and I took Emma out to tea. After we got home, Emma and Nate spent most of the rest of the day downloading iTunes on my computer to put on my iPod. David had the brilliant idea to get me an iPod and have the kids put songs on it so I can listen to music while I’m getting chemo. It’s great because when they asked what they could do to help me, we had something to suggest that actually will be helpful. Emma’s selections focused on Broadway musicals like Wicked and Spring Awakening, while Nate’s had a heavy Motown emphasis, including Marvin Gaye and the Temptations. David put music on for me too—including jazz, which is still his passion, and some classical music that he knows I love.

I called my mom tonight to tell her. She recently moved from the house where I grew up in Newton, Massachusetts to a beautiful retirement community outside of Boston. I didn’t want to worry her, but there’s no way I can go through this without telling her. She asked me what she can do to help, and I asked her to email me. She said she’ll send me a Blue Mountain card every day. I love those e-cards, with their pictures and music.

The brain surgery part is daunting. I've gotten used to my brain the way it is. I'm afraid I won't be me anymore.

Love
Laura