Get doctors you trust, and do what they tell you.
____________________
From: Laura
Sent: Thursday, March 29, 2007 11:59 PM
To: Nate
Subject: Your visit
Hi Nate. Thanks so much for coming to visit me on my first evening in the hospital. I take it as a good sign that there was a 5-episode marathon of The Office on TV.
I’m delighted about the SAT. What a relief to know that you’re done with that now. It's a huge weight off your shoulders, and one that you've been carrying around for months. Let it feel lighter—it is!
The college thing will sort itself out. It’s great that you’re figuring out what you want in a school. You'll have a lot more information about all the schools by the time you make a choice.
Tomorrow is Dad's actual 50th birthday—can you make sure to wish him a happy birthday from me first thing in the morning, and give my love to Emma?
I love you, Nate.
Love
Mom
____________________
From: Laura
Sent: Friday, March 30, 2007 12:49 AM
To: Jennifer
Subject: First hospital admission
Hi Jen. It was so wonderful of you to call and wish me luck the night before I was admitted. I was a little nervous about being hospitalized. I thought I was acting pretty cool about the whole thing, but you can see right through me, as usual. It just shows your insight into the human psyche (or at least into mine!). I like your suggestion that if I’m scared, I should just listen to Bach.
Let me tell you today’s chemo story. We got in at 9 am Thursday morning to admitting, and a woman named Sandy checked me in. We were supposed to wait for Escort but they took forever—now there's a shock!—so David and I jumped ship and went up to the eighth floor ourselves (I promised the woman in admitting that we would claim we snuck out and would never let on that she knew we were leaving). David helped me settle into the room here. We put my iPod and cell phone on a little table beside the bed, on their respective chargers. The room had a bed on which I spread a fuzzy green blanket from home, window with view, TV, DVD player, closet, private bathroom, and working hospital computer. I take the computer as definitive proof of the existence of God.
The floor I’m on, M8, is the Bone Marrow Transplant (BMT) floor. Although I’m not getting a BMT now (that’s plan B if the chemo is unsuccessful), sometimes lymphoma patients who are not getting transplants stay on this floor. Every patient gets a single room for two reasons. First, BMT patients are susceptible to infection, so they like to keep them isolated. Second, because the BMT patients are often here for long periods of time, sometimes up to two months or longer, the rooms are often spacious enough so that a family member can sleep over. Another thing that’s good about being here is that if I do end up needing a BMT eventually, at least I’ll be familiar with where it’s going to happen.
The nurse, Trish, accessed the port, which she did fairly painlessly, using the spray. We started with four hours of hydration using a salt solution (normal saline with bicarbonate), with the goal of making the urine less acidic and more alkaline so that the methotrexate won't crystallize in the kidneys. They check the pH, which is a measure of urine acidity, before giving the methotrexate—the higher the pH, the less acidic and the more alkaline, and you want the urine to be alkaline, meaning a pH of 7.5 or higher. Mine was 8 (I've always been an overachiever). When the urine is alkalinized, they run in the methotrexate, a large bag of ugly yellow stuff.
One of the main complications of the methotrexate is painful ulcers in your gastrointestinal tract anywhere from the mouth (north) to the derriere (south). Trish told me that the best way to prevent those ulcers was by rinsing my mouth out frequently with a mouthwash called Biotene or with a bicarbonate wash. I did that every hour while I was awake.
The night nurse, Jonathan, was very nice and knew what he was doing. I had no problems or reactions, and I've been peeing up a storm—the goal is 150 cc/hr and I am doing far better. They'll hydrate me more tonight and check another urine pH. If the pH is too low, meaning it’s acidic, I'll need to take oral bicarbonate.
Aimee, the ultrasound technologist from 64th Street, came to visit today with a card about how the Lord is walking by my side. When people ask what they can do to help, I say without hesitation, “Pray for me.” I can't tell you how comforting it is to have people from all different religions praying for me. I have Jews writing my name on a piece of paper and sticking it in the Wailing Wall in Jerusalem and former radiology trainees in Croatia making pilgrimages. A dear friend of mine in New Orleans sent me a small wooden bracelet with pictures of the saints. I grew up in a reformed Jewish household and was never much of a believer, but somehow I feel that this positive energy in the universe channeled in my direction has got to help. And maybe there's more out there than we think.
I love you very much. I know you will have an incredible son. It is so great to have a boy and a girl!
Love
Laura
____________________
From: Laura
Sent: Friday, March 30, 2007 1:19 AM
To: David
Subject: Happy Birthday!
Dearest David
(Imagine wild music in the background and a strip tease)
Happy birthday to you
Happy birthday to you
Happy birthday dear David
Happy birthday to you
Are you 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25,26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48,49..........50? (You can't be 50; to me we will always be college students, making love in a carrel in Baker library.)
I think our boy and girl will both be OK. I love you today and every day.
Love
Laura
____________________
From: Laura
Sent: Friday, March 30, 2007 2:23 AM
To: Sam
Subject: Update, and question
Hi Sam. Just an update and a question. I tolerated the first IV R-CHOP without a hitch. I've had three courses of the intrathecal methotrexate. My first two intrathecal chemos were injected fast and I puked my guts out, but the third was injected much more slowly and it went fine. Does injecting the intrathecal chemo slowly decrease the likelihood of nausea and vomiting?
Best wishes
Laura
____________________
From: Laura
Sent: Friday, March 30, 2007 2:37 AM
To: Cindy
Subject: St. Patrick's cathedral
Hi Cindy. Can I come with you one day soon to St. Patrick's cathedral, where you’ve been lighting candles? I've never been. Maybe one day next week?
Am I allowed to light a candle for myself, or is that considered "self-referral"?
Love
Laura
____________________
From: Laura
Sent: Saturday, March 31, 2007 1:23 AM
To: Jennifer
Subject: More stories from inside
Hi Jen. Another day, and so many stories. I can't believe I was just admitted two days ago—it feels like a lifetime has gone by.
This morning there was a risk management lecture in the Department of Medicine Grand Rounds in Hoffman from 8-9 am. The Departmental secretary had emailed us that we should try to go to this one if possible; otherwise the Radiology one is in August, which is pretty far away. So I asked permission to go to the lecture, which was an elevator ride downstairs from M8. The doc covering the lymphoma service said it was OK, so I went with face mask, IV pole, and all. It was funny how people responded—most people already seemed to know; some looked right through me; and some were terrific, as I would have expected. I sat with a couple of friends from Radiology. The lecture wasn’t great. A malpractice lawyer spoke, and she was disorganized and didn't say much. But it was good to get off the floor for awhile.
Did you know that when you're an inpatient at Memorial, you're entitled to a massage from Integrative Medicine? I had Reflexology, which is a massage for your hands and feet. If the computer in the room didn't convince me of Divine Intervention, the Reflexology did. If it weren’t for the chemo, my room would be a prime vacation spot!
David and Nate came to see me yesterday. It was David’s 50th birthday; he looked exhausted. Nate was in a good mood. I think he feels better about applying to college now that he’s visited a school. Even if he decides not to apply to Cornell, our trip there seems to have demystified the process. I had other visitors yesterday also, including Cindy, who brought me frozen yogurt.
I’m not sleeping much, but I’m getting a lot of writing done. Sam agrees that the third intrathecal methotrexate was easier than the first two because the oncologist injected it very slowly the third time. Apparently, when you inject it too fast, once the chemo hits the fourth ventricle it tickles the vomiting center in your brain and you puke. I'm going to ask the oncologist to inject it more slowly in the future.
Looks like they're shooting for a possible Monday discharge, but it depends on the methotrexate level. As Phil said, "It's all about urination now." I have been exceeding expectations in the urine output department. They want 150 cc/hr. I laugh at their 150 cc/hr, and raise it by 50 cc/hr!!
I’ve been listening to Bach, as you suggested. I listened on the iPod not only to Yo Yo Ma playing the Bach Unaccompanied Cello Suite in G Major (one of my favorite pieces of all time), but also to the other five unaccompanied cello suites, to Hilary Hahn playing Bach partitas for solo violin, and to Glenn Gould playing the Bach Two- and Three-Part Inventions. You’re right—Bach has a way of making order and beauty out of turbulence and chaos.
Love
Laura
____________________
From: Laura
Sent: Saturday, March 31, 2007 6:07 AM
To: Jennifer
Subject: Saturday morning
Hi J—Saturday morning, almost 6 o'clock. Didn’t sleep much last night. The chemo part is done; the rest is just the leucovorin “chaser” and fluids. That will help lower the methotrexate level until it’s low enough that it’s safe to go home.
My hats arrived at the house last week (not a moment too soon), but in the hospital I’ve just been wearing the Monk cap that Cindy gave me. I can’t believe how Cindy has been there for me during my treatment. What a silver lining.
Charlie, who works in the file room of our outpatient breast center, is going to visit me today and bring home-made soup. He is a fantastic cook. When I was a resident taking weekend call and Charlie worked in the file room at the hospital, he used to bring in these savory lunches he had cooked with rice and chicken and shrimp and some kind of soup with a tomato base and a secret combination of spices. He also used to bring in fresh salad with these amazing tomatoes that he grew in his garden. All of the residents wanted to work on the weekends when Charlie was there.
Emma gets home from Paris today and will come to see me tomorrow. I can’t wait to see her and hear all about the spring trip.
Got to go—they want another urine sample. There's a Murphy's law (you know, “whatever can go wrong, will”) that says the nurses' aide always dumps the urine before they get to send it to the lab. I’m swigging the Gatorade now.
Love
Laura
____________________
From: Laura
Sent: Sunday, April 1, 2007 1:44 AM
To: Jennifer
Subject: Hair
Hi Jen. David picked Emma up at the Newark Airport last night, and I get to see her later today.
My hair is falling out. It’s so bizarre. You know how you brush your hair, and when you get to the bottom it stops? Well, now it just keeps going, and all the hair comes out in the brush. I know a lot of women who shaved their heads when that started happening, but I cling to the hope that a curl or two will hang on for dear life. Oh well, hair grows back. David said to me, "In September, the cancer will be gone, and so will your hair, and I couldn't care less about the hair."
Nate also helped me feel better about losing my hair. One of our family’s favorite TV shows is West Wing, the Sorkin drama about a fictitious Democratic President named Josiah Bartlett and his White House staffers. Early in the campaign, Bartlett keeps asking, “What’s next?” The staffers ask Leo, who has known Bartlett for a long time and will later become his Chief of Staff, what Bartlett means by that. Leo explains that Bartlett is saying that he understands the situation, has dealt with it, and is ready to move on. Nate reassured me that losing my hair means that the chemo is working, and that hair grows back. He added, “It’s OK, Mom. You can handle it. Do what Bartlett would do. Just ask, what’s next?”
Love
Laura
____________________
From: Laura
Sent: Sunday, April 1, 2007 7:49 PM
To: Jennifer
Subject: Laps and family visits
Dearest Jen,
Today was a wonderful day. After I emailed you, I put on my shoes and a mask and went strolling multiple laps around the nurses' station with my IV pole. The only problem with doing laps is that I have to unplug the IV pole from the wall to do it, and since the batteries are low the pump starts beeping and you have to hit “silence” every couple of minutes. But that’s a small price to pay for the freedom to roam.
The bone marrow transplant patients on this floor often aren’t allowed to leave their rooms. It’s such a luxury to be able to walk around. M8 was recently redecorated; the hallway walls are covered with large nature photos of trees, flowers, different seasons, sun, snow, and birds in the sky. The pictures (selected by Holly, the floor’s wonderful Nurse Manager) make you feel like there are windows looking out on a rustic landscape. There is also a small room called the family pantry where they have a fridge and freezer that patients and their families can use. They have coffee, tea, water, and juice there too. This morning I "went out for breakfast"—I lapped around the nurses’ station and went to the family pantry and had some delicious decaf with skim milk.
David and Emma came in the early afternoon. Emma was wearing a stunning pair of turquoise shoes that she bought on the street in Paris. They were perfect on her—they even showed toe cleavage (this is the latest thing—what a term!). She bought me a necklace with an antique chain and stones in muted colors as well as a little card from Paris with a hand-painted picture of a Parisian café. I have a bulletin board with tacks in my room, and she wrote “Emma” in the tacks on the bulletin board. David and Emma stayed about an hour and a half, and Emma told us all about her trip. After they left, I liked looking at the bulletin board, and seeing the “Emma” design—it made me feel like she was still there.
Nate came later. We had a quiet visit. Sometimes we didn't talk; I just read the paper while he was surfing the net on the computer. We walked 7 laps around the nurses' station together before he went home.
The Op Ed page of the Sunday Times featured a piece by Dr. Harold Varmus, the Nobel prize-winning scientist who is the President of Memorial, in which he said that we are winning the war against cancer. I always wanted to win the war on cancer, but for some reason I’m particularly passionate about it now.
Love
Laura
From: Laura
Sent: Monday, April 2, 2007 12:10 AM
To: Nate
Subject: Fro yo
Hi Nate. Thank you for coming to visit me, and bringing the frozen yogurt (“fro yo”)! I just took my midnight "constitutional" and got some fro yo in the family pantry—I finished the one that was almost empty and got a good healthy start on the one you brought. Thanks for providing my midnight snack. Now I'm listening to Stevie Wonder singing "Ribbon in the Sky," another beautiful song. I only did another one lap instead of seven more this evening, but it was good.
Love to Dad and Emma.
Love
Mom
____________________
From: Laura
Sent: Monday, April 2, 2007 1:36 AM
To: Frances
Subject: Prayer group
Hi Frances. Please thank your prayer group for the beautiful prayer they sent me, called “I Asked God.”
I asked God to take away my pain. God said, No.
It is not for me to take away, but for you to give it up.
I asked God to make my handicapped child whole. God said, No.
His spirit is whole, his body is only temporary.
I asked God to grant me patience. God said, No.
Patience is a byproduct of tribulations; it isn't granted, it is learned.
I asked God to give me happiness. God said, No.
I give you blessings. Happiness is up to you.
I asked God to spare me pain. God said, No.
Suffering draws you apart from worldly cares and brings you closer to Me.
I asked God to make my spirit grow. God said, No.
You must grow on your own, but I will prune you to make you fruitful.
I asked God for all things that I might enjoy life. God said, No.
I gave you life, so that you may enjoy all things.
I asked God to help me love others, as much as He loves me.
God said Ahhhh, finally you have the idea.
Love
Laura
____________________
From: Laura
Sent: Monday, April 2, 2007 7:21 AM
To: David
Subject: Coming home
Hi Babe. Just a note to thank you for bringing your button-down green flannel shirt for me to wear this morning. It makes me feel protected by you. It’s much easier to maneuver a button-down shirt than a pullover shirt when I’m hooked up to an IV—to get out of the pullover, I actually have to push it down to the floor and step out of it, and step into the next shirt and pull it up. And there’s another advantage to the button-down—it has a pocket for me to put the iPod in! I walked multiple laps around the nurses’ station this morning and then "went out for coffee" to the Family Pantry. Apparently 14 laps is a mile (a patient on 12 clocked it), so I can even quantify my exercise—I walked more than a mile today!
I slept well last night and took a good shower this morning. They're still giving me the leukovorin "rescue." It's my favorite part of the chemo. I'd much rather have someone give me a "rescue" than a "CHOP." They really have to rethink the names of these chemo regimens—“CHOP” is bad enough, but apparently there’s another one called “ICE.” What kind of message does that send? Anyway, I just called the cafeteria (euphemistically referred to as “room service”) to order breakfast, and they picked up the phone right away. Scrambled eggs and toast and decaf and a fresh orange and a banana.
They run the methotrexate level at noon, so it probably won't be back until 2. Do you want me to call you when they are actually discharging me? It’ll probably be sometime between 2 and 5 pm. I really want to go home today, so before they take my temperature, I will suck on ice chips to make sure there is no fever (only kidding—although it’s tempting).
I got an email from a former Croatian breast imaging trainee. He told me to “beat that crazy lymphocyte!”
I love you.
Love
Laura
Sunday, November 30, 2008
Chapter 7: Home
Cancer is the best excuse you’ll ever have—use it!
____________________
From: Laura
Sent: Monday, April 2, 2007 10:00 PM
To: Jennifer
Subject: Home
Hi J. I am home, and it is even more wonderful than I remembered. Just to be free from the IV pole is bliss.
Hope your Seder was fun. Did you drink in the reclining position? Who asked the 4 questions? Sophie’s probably too young, or maybe her questions were, “When do we eat? Can we eat now? When can we play? When do we go home?”
Happy Passover.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 3, 2007 10:56 PM
To: Jennifer
Subject: Shopping with Emma
Dearest Jen,
Emma and I went on a shopping spree today after work to get spring clothes. I wore one of my Christine Moore hats for the first time. I chose the Easy, which has a beige straw cloth slouch crown with a medium up brim, a little bow, and thin trim in a pattern of tiny vertical stripes in turquoise, pink, yellow, and white.
First, we went to a shoe store called Arche. They had just gotten in their spring sandals, and they had a style that fit me perfectly: it was as if they had custom designed these shoes for my feet! I bought them in four colors (turquoise, yellow, pink, and tan). We went to Eileen Fisher, and I bought some clothes to wear when I’m in the hospital. Then we went to Olive & Bette’s to get summer camp clothes for Emma. David thinks I was having a manic episode, and maybe I was, but losing your hair is tough—I had no idea my head was so white—and the stuff I got will help me feel beautiful, or at least I’ll feel like my shoes and clothes are beautiful.
Tomorrow I'm going to work in the Women's Office. Thursday I have to get a blood test, and then I'm going back to the wig place. Now I wish I'd just gotten a wig with short hair. Life is too short to waste time with stuff that doesn't matter.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 5, 2007 5:22 AM
To: Cindy
Subject: Re: checking on you
Hi Cindy! I missed you yesterday too!
I came to work and got great stuff done in the Women's Office. Did I tell you I'd like to create a Women's Oncology Network (abbreviated WON) that is an international society of women doctors and scientists dedicated to eradicating cancer? So yesterday, I decided on the T-shirt slogan, and on the society stone and color. See the following excerpt from the grant proposal.
***********************************************
The goal of WON is to provide mentorship, collaboration, and unity among women physicians and scientists dedicated to the clinical treatment and research investigation of cancer. Our T-shirt slogan will be: “WON for all and all for WON!”
The color/stone of WON will be turquoise, long considered a stone that is holy, brings good fortune, and fends off the evil eye. Al Qazwini, the Persian scholar, wrote: “The hand that wears a turquoise and seals with it will never know poverty.” The Aztecs in Mexico believed that the sky blue gemstone directly connects the sky and the sea. In Orthodox Judaism, turquoise is the only non-white thread in the prayer shawl, representing the uniqueness of individuals. Turquoise has been deemed to provide protection from darkness, to guard horses and riders from unexpected falls, to endow shy people with confidence, and to be responsible for faithfulness and constancy in relationships. Turquoise is the perfect stone for WON.
***********************************************
Between you and me, the real reason I picked turquoise is because I love that color and it goes with my eyes. I'm also tired of pink for girls and blue for boys. This way we get our own blue, and a beautiful blue it is!I stopped by to see you in Mammo but it was after 5 pm and I must have just missed you. I wanted to show you my new hat, called the Natasha. It’s a soft weave with a medium brim, silk binding, and a beautiful silk bow, all in a deep violet.
Love
Laura
____________________
From: Laura
Sent: Sunday, April 8, 2007 8:56 PM
To: Jennifer
Subject: Quiet Sunday
Dearest Jen,
Today was quiet. I went out for a brief walk in the sun, but came home after a block and a freezing gust of wind. A good day to stay home and be warm. Emma and I watched the DVD of Season 1 of Project Runway (one of our favorite shows). Now I'm going to bed.
Love
Laura
____________________
From: Laura
Sent: Monday, April 9, 2007 9:57 PM
To: Jennifer
Subject: Playing the cancer card
Dearest Jen,
My friend Maureen taught me that cancer is the best excuse you’ll ever have, so use it—she calls it “playing the cancer card.” So far I’ve only done it once, to get the dinner reservations for David’s birthday party. But today I found the perfect opportunity to do it again.
In our building, people generally get cabs on a first-come, first-served basis. But you know how some people believe that the social contract doesn’t apply to them? Well, there is one Evil Woman in the building who always jumps the line. It’s so annoying—no matter how long you’ve been waiting, she cuts ahead and barrels into the cab.
Today, I was waiting for a cab when finally it pulled up into the driveway. Suddenly, the Evil Woman appeared and started to cut ahead of me in line. I said to her calmly, “Excuse me, but I have cancer, I need to get chemo, and that’s my cab.” She stopped in her tracks and stared at me, open-mouthed. While she gaped, I jumped in the cab and drove away. Success! I wish I had thought of doing this a decade ago. And the best part of all—I wasn’t even going to chemo, I was going shopping at Bloomingdale’s!
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 6:19 AM
To: Jimmie
Subject: Statistics, and update
Hi Jimmie. Thanks for the wonderful talk—it’s great to be able to discuss how it feels to be a doctor and a cancer patient with the former Chair of Psychiatry at Memorial, who practically invented the field of Psycho-Oncology.
I'd love to read the Steven Gould essay you suggested about statistics in cancer. Now is a perfect time for me to read it, because the statistics are against me. I’d also love to read your book on The Human Side of Cancer. You can send them to me either at the hospital or my home address.
Re update—I'm doing great. I've finished one month out of 6 months of chemo, and I'm a little euphoric about it. I have bought 15 beautiful new hats (I am looking at this not as losing my hair, but as an opportunity to buy new hats), and people are starting to give me hats as presents. I knew that the hats would be a fun distraction for me and would help me feel better during treatment. What I didn’t anticipate is another huge benefit: hats are terrific icebreakers. You know how some people just don’t know what to say when you have cancer? Well, when somebody can’t think of anything to say, I can always ask, “Do you like my hat?” and, relieved, they comment on my hat.
I'm writing a book. I’ll send it to you when it’s done.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 5:30 PM
To: Jennifer
Subject: Chemo OK today!
Hi Jen. Thanks for the beautiful baseball cap that says “Chemo means never having to have a bad hair day!”
I went for outpatient chemo today. I got to the hospital around 9 am. After my blood test came back, I had to wait two hours for them to mix the R-CHOP so I went to a colleague's office and worked on the computer for awhile. Around 11:30, they started the chemo. Some of the premedications made me sleepy. My nurse was named Marina, from the Ukraine. I got the chemo, napped an hour, and was done by 3:00. It was much quicker than last time—they go slow for the first R-CHOP to make sure you're not going to have a reaction, and since I passed that test, they could go much faster. Tentatively, they plan to admit me to the hospital for another inpatient chemo in two weeks.
I'm sorry you've reached the "no sleep" stage of advanced pregnancy. Do you have funky pillows in many shapes? That seemed to help me. Although being able to breathe probably would also be a big plus. Don't worry, these days will pass, and soon you'll get to meet your wonderful son, and I hope he brings you all the joy that Emma and Nate bring to me.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 8:47 PM
To: Jennifer
Subject: Ode to a Neutrophil
Hi Jen. I know I just wrote to you, but there’s one more thing I forgot to tell you. I’ve been going through piles of old papers at home, throwing away massive amounts of stuff. It’s always been hard for me to throw things away, but somehow, having cancer makes it clear to me that there are some things that will never be high enough on my radar screen for me to devote time to them, so I’ve felt freer to jettison old crap.
While sifting through ancient papers, I found a poem that I wrote during my first year of medical school at Columbia College of Physicians & Surgeons about the neutrophil, a white blood cell (also called a polymorphonuclear leukocyte or “poly”) that fights infection. This topic is particularly dear to me now because chemo lowers my white blood cell count, making me susceptible to infection. The poem describes how the precursor cell, the myeloblast, grows up into a neutrophil, and then experiences the life and death of a hero combating infection in his host. Here it is:
***********************************************************
Ode to a Neutrophil by Laura Liberman
Now once there was a myeloblast in bone marrow awaiting
The day when he would grow up and start differentiating.
His mother, a promyelocyte, urged him with voice emphatic,
“Develop! Get some lysosomes! Be metachromatic!”
He was about to do it when a red blood cell nearby
Said, “You’ll regret it if you do it, pal.” “Regret it? Why?”
The red blood cell explained to him, “If you become a poly
You’ll live 2 days in tissues and then die. It would be folly
For one so young, such as yourself, to throw your life away
And live 2 days when you could live 4 months another way."
“I'd live 4 months? How could it be? You mean there’s hope in sight?”
The myeloblast demanded of the young erythrocyte.
“Of course,” replied the RBC, for you know very well
You live 120 days if you’re a red blood cell.”
So saying, the erythrocyte got up and swam away.
The myeloblast thought over what his friend had had to say,
And he resolved to try it. Yes, he would run any risk
In order to transform into a red biconcave disc.
And so, instead of synthesizing many lysosomes
He tried to make just hemoglobin off his polysomes
So he could carry oxygen just like a red blood cell.
The myeloblast then tried to lose his nucleus as well.
His mom, a metamyelocyte, about to be a band,
Said, “What’s holding you up, my son? I do not understand.
You should have had those granules inside you long before.
Now, hurry! There’s no time to spare! You can’t wait anymore!”
“But, Mom,” replied the myeloblast, “I can’t do what you do
‘Cause if I do that I’ll become a neutrophil like you.
And die after two days of life. But red blood cells live on
So to erythropoietin I must learn to respond!”
His mother, then a neutrophil, said, “Son, give up this game.
The situation’s desperate ‘cause the tissues are inflamed.
I know there’s an infection. I feel it in my lobes.
I know that those bacteria are entering in droves.
And only we can stop them, son. It’s true our life has flaws
I know that we must die for it, but we die for a cause.”
She turned and left the bone marrow, swam through the sinusoid
And gave a last long look at her delinquent little boy.
He thought it over. No, he couldn’t selfishly ignore
His duty as a neutrophil as he had done before.
“Longevity is nice,” said he, “but I must do what’s right,
And so I’ll be a polymorphonuclear leukocyte.”
And so, our friend the myeloblast gave up his former ways.
He turned into a neutrophil in less than 14 days.
And then he left the bone marrow, swam through the circulation,
Diapedesing when he found the site of inflammation.
“The place is full of bugs!” he cried. “Now what am I to do?”
A nearby poly said, “Just eat it, get it inside you,
And let your granules do the rest.” Our friend then heard the moanin’
Of an unlucky bug who had been coated with opsonin.
He hit it with his 2-1 punch until it was digested
Then turned to other bugs with which the tissue was infested.
It was a hard-fought battle, but the polys won the war.
The tissue, once inflamed, became just as it was before.
But yea, alas, our poly was breathing his last breath.
His two-day life was over. He died a martyr’s death.
So let us thank the neutrophil, who gives his life to us
Who fights with our bacteria and dies with them in pus.
No choristers will sing for him. For him will toll no bells,
But we will thank the neutrophil, the noblest of the cells.
***********************************************************
As I recall, when I recited the poem to Dr. John Lindenbaum’s hematology class at Columbia P&S, there wasn't a dry eye in the house.
Love
Laura
____________________
From: Laura
Sent: Monday, April 2, 2007 10:00 PM
To: Jennifer
Subject: Home
Hi J. I am home, and it is even more wonderful than I remembered. Just to be free from the IV pole is bliss.
Hope your Seder was fun. Did you drink in the reclining position? Who asked the 4 questions? Sophie’s probably too young, or maybe her questions were, “When do we eat? Can we eat now? When can we play? When do we go home?”
Happy Passover.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 3, 2007 10:56 PM
To: Jennifer
Subject: Shopping with Emma
Dearest Jen,
Emma and I went on a shopping spree today after work to get spring clothes. I wore one of my Christine Moore hats for the first time. I chose the Easy, which has a beige straw cloth slouch crown with a medium up brim, a little bow, and thin trim in a pattern of tiny vertical stripes in turquoise, pink, yellow, and white.
First, we went to a shoe store called Arche. They had just gotten in their spring sandals, and they had a style that fit me perfectly: it was as if they had custom designed these shoes for my feet! I bought them in four colors (turquoise, yellow, pink, and tan). We went to Eileen Fisher, and I bought some clothes to wear when I’m in the hospital. Then we went to Olive & Bette’s to get summer camp clothes for Emma. David thinks I was having a manic episode, and maybe I was, but losing your hair is tough—I had no idea my head was so white—and the stuff I got will help me feel beautiful, or at least I’ll feel like my shoes and clothes are beautiful.
Tomorrow I'm going to work in the Women's Office. Thursday I have to get a blood test, and then I'm going back to the wig place. Now I wish I'd just gotten a wig with short hair. Life is too short to waste time with stuff that doesn't matter.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 5, 2007 5:22 AM
To: Cindy
Subject: Re: checking on you
Hi Cindy! I missed you yesterday too!
I came to work and got great stuff done in the Women's Office. Did I tell you I'd like to create a Women's Oncology Network (abbreviated WON) that is an international society of women doctors and scientists dedicated to eradicating cancer? So yesterday, I decided on the T-shirt slogan, and on the society stone and color. See the following excerpt from the grant proposal.
***********************************************
The goal of WON is to provide mentorship, collaboration, and unity among women physicians and scientists dedicated to the clinical treatment and research investigation of cancer. Our T-shirt slogan will be: “WON for all and all for WON!”
The color/stone of WON will be turquoise, long considered a stone that is holy, brings good fortune, and fends off the evil eye. Al Qazwini, the Persian scholar, wrote: “The hand that wears a turquoise and seals with it will never know poverty.” The Aztecs in Mexico believed that the sky blue gemstone directly connects the sky and the sea. In Orthodox Judaism, turquoise is the only non-white thread in the prayer shawl, representing the uniqueness of individuals. Turquoise has been deemed to provide protection from darkness, to guard horses and riders from unexpected falls, to endow shy people with confidence, and to be responsible for faithfulness and constancy in relationships. Turquoise is the perfect stone for WON.
***********************************************
Between you and me, the real reason I picked turquoise is because I love that color and it goes with my eyes. I'm also tired of pink for girls and blue for boys. This way we get our own blue, and a beautiful blue it is!I stopped by to see you in Mammo but it was after 5 pm and I must have just missed you. I wanted to show you my new hat, called the Natasha. It’s a soft weave with a medium brim, silk binding, and a beautiful silk bow, all in a deep violet.
Love
Laura
____________________
From: Laura
Sent: Sunday, April 8, 2007 8:56 PM
To: Jennifer
Subject: Quiet Sunday
Dearest Jen,
Today was quiet. I went out for a brief walk in the sun, but came home after a block and a freezing gust of wind. A good day to stay home and be warm. Emma and I watched the DVD of Season 1 of Project Runway (one of our favorite shows). Now I'm going to bed.
Love
Laura
____________________
From: Laura
Sent: Monday, April 9, 2007 9:57 PM
To: Jennifer
Subject: Playing the cancer card
Dearest Jen,
My friend Maureen taught me that cancer is the best excuse you’ll ever have, so use it—she calls it “playing the cancer card.” So far I’ve only done it once, to get the dinner reservations for David’s birthday party. But today I found the perfect opportunity to do it again.
In our building, people generally get cabs on a first-come, first-served basis. But you know how some people believe that the social contract doesn’t apply to them? Well, there is one Evil Woman in the building who always jumps the line. It’s so annoying—no matter how long you’ve been waiting, she cuts ahead and barrels into the cab.
Today, I was waiting for a cab when finally it pulled up into the driveway. Suddenly, the Evil Woman appeared and started to cut ahead of me in line. I said to her calmly, “Excuse me, but I have cancer, I need to get chemo, and that’s my cab.” She stopped in her tracks and stared at me, open-mouthed. While she gaped, I jumped in the cab and drove away. Success! I wish I had thought of doing this a decade ago. And the best part of all—I wasn’t even going to chemo, I was going shopping at Bloomingdale’s!
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 6:19 AM
To: Jimmie
Subject: Statistics, and update
Hi Jimmie. Thanks for the wonderful talk—it’s great to be able to discuss how it feels to be a doctor and a cancer patient with the former Chair of Psychiatry at Memorial, who practically invented the field of Psycho-Oncology.
I'd love to read the Steven Gould essay you suggested about statistics in cancer. Now is a perfect time for me to read it, because the statistics are against me. I’d also love to read your book on The Human Side of Cancer. You can send them to me either at the hospital or my home address.
Re update—I'm doing great. I've finished one month out of 6 months of chemo, and I'm a little euphoric about it. I have bought 15 beautiful new hats (I am looking at this not as losing my hair, but as an opportunity to buy new hats), and people are starting to give me hats as presents. I knew that the hats would be a fun distraction for me and would help me feel better during treatment. What I didn’t anticipate is another huge benefit: hats are terrific icebreakers. You know how some people just don’t know what to say when you have cancer? Well, when somebody can’t think of anything to say, I can always ask, “Do you like my hat?” and, relieved, they comment on my hat.
I'm writing a book. I’ll send it to you when it’s done.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 5:30 PM
To: Jennifer
Subject: Chemo OK today!
Hi Jen. Thanks for the beautiful baseball cap that says “Chemo means never having to have a bad hair day!”
I went for outpatient chemo today. I got to the hospital around 9 am. After my blood test came back, I had to wait two hours for them to mix the R-CHOP so I went to a colleague's office and worked on the computer for awhile. Around 11:30, they started the chemo. Some of the premedications made me sleepy. My nurse was named Marina, from the Ukraine. I got the chemo, napped an hour, and was done by 3:00. It was much quicker than last time—they go slow for the first R-CHOP to make sure you're not going to have a reaction, and since I passed that test, they could go much faster. Tentatively, they plan to admit me to the hospital for another inpatient chemo in two weeks.
I'm sorry you've reached the "no sleep" stage of advanced pregnancy. Do you have funky pillows in many shapes? That seemed to help me. Although being able to breathe probably would also be a big plus. Don't worry, these days will pass, and soon you'll get to meet your wonderful son, and I hope he brings you all the joy that Emma and Nate bring to me.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 8:47 PM
To: Jennifer
Subject: Ode to a Neutrophil
Hi Jen. I know I just wrote to you, but there’s one more thing I forgot to tell you. I’ve been going through piles of old papers at home, throwing away massive amounts of stuff. It’s always been hard for me to throw things away, but somehow, having cancer makes it clear to me that there are some things that will never be high enough on my radar screen for me to devote time to them, so I’ve felt freer to jettison old crap.
While sifting through ancient papers, I found a poem that I wrote during my first year of medical school at Columbia College of Physicians & Surgeons about the neutrophil, a white blood cell (also called a polymorphonuclear leukocyte or “poly”) that fights infection. This topic is particularly dear to me now because chemo lowers my white blood cell count, making me susceptible to infection. The poem describes how the precursor cell, the myeloblast, grows up into a neutrophil, and then experiences the life and death of a hero combating infection in his host. Here it is:
***********************************************************
Ode to a Neutrophil by Laura Liberman
Now once there was a myeloblast in bone marrow awaiting
The day when he would grow up and start differentiating.
His mother, a promyelocyte, urged him with voice emphatic,
“Develop! Get some lysosomes! Be metachromatic!”
He was about to do it when a red blood cell nearby
Said, “You’ll regret it if you do it, pal.” “Regret it? Why?”
The red blood cell explained to him, “If you become a poly
You’ll live 2 days in tissues and then die. It would be folly
For one so young, such as yourself, to throw your life away
And live 2 days when you could live 4 months another way."
“I'd live 4 months? How could it be? You mean there’s hope in sight?”
The myeloblast demanded of the young erythrocyte.
“Of course,” replied the RBC, for you know very well
You live 120 days if you’re a red blood cell.”
So saying, the erythrocyte got up and swam away.
The myeloblast thought over what his friend had had to say,
And he resolved to try it. Yes, he would run any risk
In order to transform into a red biconcave disc.
And so, instead of synthesizing many lysosomes
He tried to make just hemoglobin off his polysomes
So he could carry oxygen just like a red blood cell.
The myeloblast then tried to lose his nucleus as well.
His mom, a metamyelocyte, about to be a band,
Said, “What’s holding you up, my son? I do not understand.
You should have had those granules inside you long before.
Now, hurry! There’s no time to spare! You can’t wait anymore!”
“But, Mom,” replied the myeloblast, “I can’t do what you do
‘Cause if I do that I’ll become a neutrophil like you.
And die after two days of life. But red blood cells live on
So to erythropoietin I must learn to respond!”
His mother, then a neutrophil, said, “Son, give up this game.
The situation’s desperate ‘cause the tissues are inflamed.
I know there’s an infection. I feel it in my lobes.
I know that those bacteria are entering in droves.
And only we can stop them, son. It’s true our life has flaws
I know that we must die for it, but we die for a cause.”
She turned and left the bone marrow, swam through the sinusoid
And gave a last long look at her delinquent little boy.
He thought it over. No, he couldn’t selfishly ignore
His duty as a neutrophil as he had done before.
“Longevity is nice,” said he, “but I must do what’s right,
And so I’ll be a polymorphonuclear leukocyte.”
And so, our friend the myeloblast gave up his former ways.
He turned into a neutrophil in less than 14 days.
And then he left the bone marrow, swam through the circulation,
Diapedesing when he found the site of inflammation.
“The place is full of bugs!” he cried. “Now what am I to do?”
A nearby poly said, “Just eat it, get it inside you,
And let your granules do the rest.” Our friend then heard the moanin’
Of an unlucky bug who had been coated with opsonin.
He hit it with his 2-1 punch until it was digested
Then turned to other bugs with which the tissue was infested.
It was a hard-fought battle, but the polys won the war.
The tissue, once inflamed, became just as it was before.
But yea, alas, our poly was breathing his last breath.
His two-day life was over. He died a martyr’s death.
So let us thank the neutrophil, who gives his life to us
Who fights with our bacteria and dies with them in pus.
No choristers will sing for him. For him will toll no bells,
But we will thank the neutrophil, the noblest of the cells.
***********************************************************
As I recall, when I recited the poem to Dr. John Lindenbaum’s hematology class at Columbia P&S, there wasn't a dry eye in the house.
Love
Laura
Chapter 8: Reaching Out
Ask for what you need. Use your experience to help others.
____________________
From: Laura
Sent: Tuesday, April 10, 2007 6:20 PM
To: Mel
Subject: Heads up, and Jung-min
Hi Mel. I am writing for three reasons. First, I want to tell you how wonderful it was to see you at the National Institutes of Health breast cancer meeting on ductal carcinoma in situ (DCIS) in January. I loved your presentation of the data on DCIS from your surgical practice. You don't look a day older than you did when we met in Venezuela 15 years ago. It was like old times.
The second reason is that I want to give you a heads up on some stuff going on with me. I was recently diagnosed with an aggressive marginal B zone lymphoma and started six months of chemotherapy in March. So far, I’ve received 7 of 18 doses of chemo: 2 of 6 outpatient IV R-CHOPS, 4 of 6 outpatient intrathecal methotrexates, and 1 of 6 high-dose IV methotrexates. If all goes well, I'll be done in September.
But the most important reason I'm writing is reason #3. I have the most fabulous fellow on the planet named Jung-min who has been doing research with me for two years. She has applied for the Oncology Fellowship at your hospital to begin July 2008. Since joining me, she has presented an abstract at a national meeting, written a first-author paper in press, and started a second manuscript. In addition, while I’ve been getting chemo, she has kept up my huge database on image-guided breast biopsy. Jung-min has allowed me to maintain an active research program when it would have otherwise been impossible. I don’t know anyone else who could have stepped to the plate the way she did.
Jung-min will be coming out to interview at your hospital soon (I’ll send you the exact dates). I’d love for you to speak with her. I know you’re not involved with admissions to the Oncology program, but it would be great if she could sit down and talk to you about the pros and cons of the different programs in your area that she’s considering, to help her decide what would be best for her.
She can be shy at first, but I know she’ll be comfortable with you. Don't let her quiet demeanor dissuade you. Jung-min is among the most outstanding trainees I’ve ever had in almost two decades as well as a caring and sensitive person, and I've worked with some pretty awesome people.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 11, 2007 8:28 AM
To: Mel
Subject: Kindred spirits
Dear Mel,
Thanks for your beautiful letter. I see that we are kindred spirits.
I didn’t know about your health problems—I am so sorry that you had to go through that! I am inspired by your survival, but it doesn't surprise me about you. If you can make it through an aortic dissection, maybe I can handle a pinch of lymphoma!
I am writing a book about the experience of being a doctor and a patient. I'm thinking of calling it "Both Sides Now" (like the Judy Collins song).
I still look for justice in the universe, in spite of all evidence to the contrary. For some things I can't find the justice. Maybe that's where faith comes in. I didn't think I had much of that, but I'm finding more comfort in the prayer stuff than I would have believed possible.
I will send you updates. Thank you for agreeing to meet with Jung-min. I love her like a daughter.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 11, 2007 8.45 PM
To: Mel
Subject: Backstory: David
Dear Mel,
I got an email back from the fellowship program director at your hospital. It looks like she is one of the good guys! I told Jung-min that she should look for you when she visits, and that you would look out for her. You will love her too.
You are right when you talk about how we meet at meetings and know so little about each other. Let me tell you more.
I met my husband, David, the summer before my freshman year in college. I was 16 (I had skipped a couple of years in school) and David was 19. He was my lab partner in Physics at Harvard Summer School. I was sitting in class on the first day in a pair of very short shorts (it was the seventies). David walked in: long black hair, moustache and beard, old beat-up sneakers, blue t- shirt, cozy flannel overshirt, and faded jeans, with a Dos Passos novel in his back pocket. He had a choice of sitting next to me or a woman with very large breasts named Liane who went to Wellesley. Luckily he picked me. I was especially lucky because I had originally signed up to study mime and juggling in Paris, Maine that summer, and switched to Physics at the last minute. Otherwise, I might have married a juggler!
After class, we went out for coffee together at a little café in the Harvard Science Center. He told me his name was David. I told him my name was Laura and that I had a brother named David (his age) and he said he had a sister named Laura (my age, living in Hollywood). When he revealed that his grandmother had a parakeet with the same name as my parakeet (Blue Boy), I knew that we were meant to be together. I found out quickly that he was a jazz enthusiast and was missing it terribly in Boston. He had brought two jazz mixed tapes and a small tape player, and listened to those tapes constantly. We shared a love of music; I’d previously listened primarily to classical music, but he introduced me to jazz.
A couple of nights after we met, I had to go get groceries in Harvard Square. David needed some stuff and asked me to pick it up and gave me his key to drop the stuff off in his room. I made a copy of his key. I didn't realize that this was a big deal, something that got discussed—I was just being practical. I figured I'm going to be spending time with this guy, so I need a key. I also got him one of those Hallmark cards that said, “Love is where you find it… I’ll be here all day.” And I wrote in: “…and for the rest of your life.” Why he didn't run screaming in the other direction I can't imagine.
We were long distance for four years in college—he went to Dartmouth and I went to Harvard—and we had a commuter bus ticket from Boston to White River Junction, Vermont. He was a year ahead of me in school, so he graduated first. He went to medical school in New York, and I followed him to New York when I graduated college. We lived together for two years in medical school and then got married. I had basically asked him to marry me the summer we met; a mere six years later, he said yes. (But the company line is, he got down on bended knee and begged me to be his wife. That’s our story and we’re sticking to it.)
David and I have known each other 31 years out of the 47 I've been alive, and we celebrate our 25th wedding anniversary this June. He’s a doctor specializing in Infectious Disease at Beth Israel in downtown New York, and does a lot of clinical work and research with AIDS patients. David is the most amazing husband and father. We go to jazz clubs together, and read books and hang out with the kids. He is my bird—we mated for life.
If I had to have cancer, I couldn’t have picked a better partner to help me through it. Sometimes I think it’s harder on the spouse than it is on the cancer patient. My mission is focused and defined (survival), while David has to pick up the pieces, emotionally support me and the kids, and deal with all the logistics of daily life. I tell the women faculty that one of the most important decisions they make is about a life partner. Life throws you a lot of curve balls, and if you’re going to choose a partner, it should be someone who’ll actually help. Unfortunately, by the time they’re women faculty they’ve often made the choice already, and that ship has sailed. Sometimes I think the best thing we could do in the Women’s Office is to find a bunch of suitable Significant Others for our women faculty, but I bet that’s way beyond our budget.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 12, 2007 8:47 PM
To: Mel
Subject: Backstory: Dad
Dear Mel,
Thanks for your email. I loved the story of how your parents met when your father was pumping gas in a gas station and your mother was in the car with her step-mother. I’m sorry that they each lost a parent at a young age. It’s interesting that the lesson they taught you as a child was that everything you have could quickly be taken away from you. You asked about my parents, so I’ll tell you.
My father, Robert, grew up in Chicago in the Depression. His dad died when he was six years old. He and his mom lived with relatives who argued all the time. My father was a peace-loving man who would walk 20 miles to avoid an argument. Being dependent on cantankerous relatives taught him the importance of being able to make your own living. “Be financially independent” was the take-home message of my childhood. My dad was a gifted pianist and had studied with Vladimir Horowitz’s teacher. He could have been a concert pianist, but he hated to travel. More importantly, having grown up poor, he wanted a steady income.
The year my father graduated from high school, Sears/Roebuck gave a full tuition scholarship to the student who graduated first in his class from John Marshall High School, where my dad went. That person was my father. Being #2 would not have been good enough. That's how I learned to go for the top. He went to the University of Chicago (his home town) courtesy of Sears, joined the Army in World War II, and then attended Law School courtesy of the Army. When I went to college, it was a great source of pride to him that he could help pay for my education.
My dad was a law professor at Boston University. Law was an interesting career choice for a man who hated an argument. He practiced law only briefly. He mainly taught, and he was a wonderful teacher. He never pretended to know something he didn’t—instead, he asked someone who knew, looked it up, or figured it out himself. I learned that lesson from him, and it’s crucial, especially in medicine, where it can be life-threatening to pretend you know something you don’t.
He used to take me out on Sunday mornings to breakfast at a Jewish deli in Boston called the B&D, and he taught me how to do algebra problems on the back of a paper napkin. John is two years older than Mary. In one year, John will be twice as old as Mary is now. How old are John and Mary? And I was always amazed that my father knew so many Johns and so many Marys.
My father met my mother on a blind date when she was in law school and he was a practicing lawyer. A friend asked him if he wanted to meet a cute blonde or a big Israeli. He chose the big Israeli, Judith—that’s my mom. She’s tall, about 5’10”; he was 5’7”. She got the best grades in the class and worked the hardest. In a Master of Laws program they took after they got married, my mom studied like crazy; my dad just skimmed her notes the night before the exam. She got the highest score and he got the next highest—a hair lower, but with much less work. She laughs when she tells the story. I was a student in my mom’s tradition of relentless workaholism, while my husband was a more inspired and laid back student like my dad. My mom gave up law to be an artist, while my dad became a law professor.
Having pulled himself up from poverty, my father knew the value of hard work. He used to quote Thomas Edison, who said, “Genius is 1% inspiration and 99% perspiration.” We used to play the card game, “Hearts.” Usually, in Hearts, every heart you win counts one point against you, and the Queen of Spades counts 13 points against you. However, winning all of the hearts and the Queen of Spades is a landslide victory called “shooting the moon.” My dad always tried to shoot the moon, and usually succeeded. He taught me to try even when the outcome was uncertain. Again, he quoted Edison: when Edison’s initial attempts to invent the light bulb did not yield the results he hoped, he said, “I have not failed. I’ve just found 10,000 ways that don’t work.”
When I was in high school, Stanford was my top choice for college. I looked at the map of the country and saw that Palo Alto, California was about as far as you could go in the United States from Newton, Massachusetts, and figured that's what I had to do to be independent. Luckily I was rejected. Maybe they thought I was too young at 16. But I picked up the broken pieces of my life and went to Harvard. Proximity to my family turned out to be a wonderful thing. My father had a heart attack the summer after my freshman year in college and then multiple strokes after that, and spent much of the next few years in and out of the hospital. Because I was in school so close to home, I was able to spend precious time with him.
While I was growing up, my father loved to play the piano. I remember falling asleep at night listening to him playing Chopin Nocturnes (how many girls are lucky enough to get that kind of lullaby?). Encouraged by my father, I started playing the piano when I was six. When I was ten and again when I was twelve, I was the guest piano soloist with the Boston Symphony Orchestra. We had two pianos at home, a small upright and a big grand piano, both in our living room. We played piano duets together, for fun and in concerts. My favorite was the Schubert Fantastia in F Minor, where the voices of the two pianos echo and complement each other like two inseparable friends.
My father loved to read and analyze literature. He was a terrific writer and published short stories. A gentle soul, he wrote surprisingly dark stories, some of which reflected memories of German concentration camps that he had seen in World War II. He loved to read books about the process of writing, like The Technique of the Novel by Thomas Uzzell. I got my love of reading and writing from him, and have passed it on to Nate and Emma. He would have loved to write a book, but he got stuck in the outline phase. Years of outlines, covering one yellow legal pad after another with his exuberant handwriting in black ink.
I remember speaking to him one night right after he had the stroke that robbed him of his ability to play the piano. I have never heard a voice so broken by loss. He told me that he was sorry I had been born, because he did not want me to get hurt someday as he had been hurt. He said, "Why couldn't I have brought someone into the world who is heartless, cruel, cold, and unfeeling? The world is no place for sensitive people."
When he was in the hospital, he had slurred speech from the stroke, but his mind was lucid. I remember how some of the doctors and nurses treated him like he was stupid because he couldn’t enunciate his words clearly. I couldn't believe what a difference it made to his outlook and self-esteem whether he was treated with respect and compassion or with the assumption that he was an idiot.
My father had always wanted me to be a doctor. When I was six years old and playing the piano, people would ask my father, “What does Laura want to be?” And he said, "She wants to be a concert pianist, but medicine will be her back-up profession." I remember thinking, “I never said that. That must be what he wants.” When my father got sick during my college years, I gave up my physics major (which I had particularly enjoyed because I was the only girl in the class) and decided to be a doctor. I figured that’s what he wanted, and I loved him so much that I wanted it too. Maybe I could keep people from suffering the way he suffered.
My father taught me what it takes to master something. He used to practice the piano for hours daily. He used to say, “If I don’t practice one day, I know it; if I don’t practice two days, my friends know it; if I don’t practice three days, the audience knows it.” After the first stroke, he was tireless at doing his rehabilitation exercises. He spent hours relearning activities like putting on socks, tying his shoes, and walking. He never got impatient or frustrated; if he didn’t succeed, he would simply do it again. Once I went to rehab with him, and I remember how he asked the therapist to give him more exercises. “I’m very good at practicing,” he told her. He was right.
My father died right after I began my radiology residency in New York. He had spent much of the last few years of his life terrified of becoming a vegetable from another stroke. As it turned out, he worried for nothing—he died of a massive heart attack in the middle of a chess game, and he was a knight and a pawn ahead at the time. If my father had only known that would be his exit strategy, the last few years of his life would have been so much better! He would have particularly enjoyed that at the moment of his death during the chess game, he was winning.
He wanted to be cremated and have his ashes scattered in the ocean. On the morning of his funeral, I couldn't believe that the sun was shining as if nothing had happened. We rented a boat in Maine, and released his ashes with Beethoven’s 7th Symphony, 2nd movement (Allegro) playing. I chose that music because it combines major and minor keys, expressing how life is full of both sorrow and joy: it’s sad that he died, but it’s even more glorious that he lived. The score starts with a simple base line, and then progressively adds more and more instruments until there is a groundswell of unbelievably beautiful music, analogous to starting at birth, finding more complexity and joy at each level of life, and finally earning the ascent into heaven.
During the funeral, I was comforted by the fact that my father had met and liked David, and that he got to attend our wedding three years before he died. However, I was seized by the thought that now my kids (who were not even a twinkle in my eye at that point!) would never get to meet my father. It was an odd thought. Until then I hadn’t been certain about having children, but when I lost my father, I realized that having kids was no longer a question of whether, only when. I wish I could talk to my father again, even just for five minutes, and I wish he could meet Nate and Emma. Talk about a sense of humor. He had it all.
That’s my story. Maybe that’s how I'll tell it in the book. The book may end up being emails that I write and receive during this journey. If it's OK with you, I may include the picture you sent me of the seed becoming a plant that grew right through the roof of your hot tub. That was a beautiful picture and a beautiful story. I hope to be strong like the seed, and to break through hot tub covers in a single bound.
Love
Laura
____________________
From: Laura
Sent: Friday, April 13, 2007 5:36 AM
To: Mark
Subject: Pain: ideas
Hi Mark. I want to touch base with you in your capacity as a neurosurgeon about something important. I've had four Omaya taps for intrathecal chemo so far, so I speak from some experience. My lymphoma doc is a wonderful doctor and a terrific human being. The procedure itself, however, is painful.
Sometimes, as doctors, we feel that the most important aspect of treatment is killing the cancer, and if that means you feel a little pain, you should “suck it up.” I agree that if killing the cancer requires pain, suck it up. But if the cancer can be cured in a way that is painful or less painful but equally effective, the less painful method is the clear choice.
There is a feeling (of which I have also been guilty, when I got to play doctor) that focusing on the pain distracts from the major mission of curing the cancer. That's wrong. Even if the physician who has primary responsibility for killing the cancer doesn't want to be "distracted" by thinking about pain, we should make it a priority that someone on the team is focused on pain relief. We should not tolerate errors in pain management any more than we would tolerate giving the wrong dose of chemo, or treating with an improper antibiotic, or performing surgery on the wrong side of the body.
I have specific suggestions for pain prevention when putting a needle into an Omaya. For the past few decades in Breast Imaging, we’ve been doing pre-operative needle localization procedures, in which we place a wire in a woman's breast pre-operatively to guide the surgeon towards a breast lesion that can’t be felt. Before the loc, we spray the area of the breast with a spray called "Gebauer's Ethyl Chloride Medium Stream Spray," which is considered a "topical anesthetic skin refrigerant" and works instantly. Another good local anesthetic is Emla cream. It can be applied over the area to be accessed (eg the Omaya or Mediport), but unlike the spray, the Emla cream requires half an hour to work.
Since you put the Omayas in during neurosurgery, is there a way you can convey in the post-op instructions the recommendation for numbing prior to putting a needle into the Omaya to remove fluid or give chemo? You can even suggest the Ethyl Chloride spray and the Emla cream. Either the treating oncologist could give the patient the necessary prescriptions, or we can make sure that the meds are available in all the chemo suites so that they can be used to increase patient comfort for all needling procedures. The spray or Emla cream could also be used prior to other needling procedures elsewhere in the body, like accessing Mediports. After the anesthesia, the area can be prepped with sterile technique, so it shouldn’t increase the chance of infection.
Another thing. I learned through personal experience that the likelihood of vomiting is directly related to the speed of intrathecal injection. Sam, my neurologist, confirmed that if it's injected too quickly, once it hits the 4th ventricle it tickles the vomiting center and you puke. If we're rewriting the post-Omaya instructions, can we include the recommendation to inject slowly, and maybe even give a guideline as to the maximum suggested injection rate? Most intrathecal chemo patients probably believe that vomiting just goes with the territory, and would not think to ask the physician to slow down. We need to write it into the guidelines to make it happen.
I’d appreciate your thoughts. I am no wimp and if pain is necessary to cure my lymphoma, I’ll endure it. But if we can make it less painful or even painless, we should go for it. Even a small amount of pain per procedure over a long course of treatment adds up, and gives those individuals with cancer yet another thing to dread. It is our mission not only to cure cancer but also to relieve suffering. We can be the best at both. Let's do it. Then I will know that my lymphoma is for a good reason, and I will find the justice in the universe that I perpetually seek.
Best wishes
And in a spirit of making things better (always)
Laura
____________________
From: Laura
Sent: Tuesday, April 10, 2007 6:20 PM
To: Mel
Subject: Heads up, and Jung-min
Hi Mel. I am writing for three reasons. First, I want to tell you how wonderful it was to see you at the National Institutes of Health breast cancer meeting on ductal carcinoma in situ (DCIS) in January. I loved your presentation of the data on DCIS from your surgical practice. You don't look a day older than you did when we met in Venezuela 15 years ago. It was like old times.
The second reason is that I want to give you a heads up on some stuff going on with me. I was recently diagnosed with an aggressive marginal B zone lymphoma and started six months of chemotherapy in March. So far, I’ve received 7 of 18 doses of chemo: 2 of 6 outpatient IV R-CHOPS, 4 of 6 outpatient intrathecal methotrexates, and 1 of 6 high-dose IV methotrexates. If all goes well, I'll be done in September.
But the most important reason I'm writing is reason #3. I have the most fabulous fellow on the planet named Jung-min who has been doing research with me for two years. She has applied for the Oncology Fellowship at your hospital to begin July 2008. Since joining me, she has presented an abstract at a national meeting, written a first-author paper in press, and started a second manuscript. In addition, while I’ve been getting chemo, she has kept up my huge database on image-guided breast biopsy. Jung-min has allowed me to maintain an active research program when it would have otherwise been impossible. I don’t know anyone else who could have stepped to the plate the way she did.
Jung-min will be coming out to interview at your hospital soon (I’ll send you the exact dates). I’d love for you to speak with her. I know you’re not involved with admissions to the Oncology program, but it would be great if she could sit down and talk to you about the pros and cons of the different programs in your area that she’s considering, to help her decide what would be best for her.
She can be shy at first, but I know she’ll be comfortable with you. Don't let her quiet demeanor dissuade you. Jung-min is among the most outstanding trainees I’ve ever had in almost two decades as well as a caring and sensitive person, and I've worked with some pretty awesome people.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 11, 2007 8:28 AM
To: Mel
Subject: Kindred spirits
Dear Mel,
Thanks for your beautiful letter. I see that we are kindred spirits.
I didn’t know about your health problems—I am so sorry that you had to go through that! I am inspired by your survival, but it doesn't surprise me about you. If you can make it through an aortic dissection, maybe I can handle a pinch of lymphoma!
I am writing a book about the experience of being a doctor and a patient. I'm thinking of calling it "Both Sides Now" (like the Judy Collins song).
I still look for justice in the universe, in spite of all evidence to the contrary. For some things I can't find the justice. Maybe that's where faith comes in. I didn't think I had much of that, but I'm finding more comfort in the prayer stuff than I would have believed possible.
I will send you updates. Thank you for agreeing to meet with Jung-min. I love her like a daughter.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 11, 2007 8.45 PM
To: Mel
Subject: Backstory: David
Dear Mel,
I got an email back from the fellowship program director at your hospital. It looks like she is one of the good guys! I told Jung-min that she should look for you when she visits, and that you would look out for her. You will love her too.
You are right when you talk about how we meet at meetings and know so little about each other. Let me tell you more.
I met my husband, David, the summer before my freshman year in college. I was 16 (I had skipped a couple of years in school) and David was 19. He was my lab partner in Physics at Harvard Summer School. I was sitting in class on the first day in a pair of very short shorts (it was the seventies). David walked in: long black hair, moustache and beard, old beat-up sneakers, blue t- shirt, cozy flannel overshirt, and faded jeans, with a Dos Passos novel in his back pocket. He had a choice of sitting next to me or a woman with very large breasts named Liane who went to Wellesley. Luckily he picked me. I was especially lucky because I had originally signed up to study mime and juggling in Paris, Maine that summer, and switched to Physics at the last minute. Otherwise, I might have married a juggler!
After class, we went out for coffee together at a little café in the Harvard Science Center. He told me his name was David. I told him my name was Laura and that I had a brother named David (his age) and he said he had a sister named Laura (my age, living in Hollywood). When he revealed that his grandmother had a parakeet with the same name as my parakeet (Blue Boy), I knew that we were meant to be together. I found out quickly that he was a jazz enthusiast and was missing it terribly in Boston. He had brought two jazz mixed tapes and a small tape player, and listened to those tapes constantly. We shared a love of music; I’d previously listened primarily to classical music, but he introduced me to jazz.
A couple of nights after we met, I had to go get groceries in Harvard Square. David needed some stuff and asked me to pick it up and gave me his key to drop the stuff off in his room. I made a copy of his key. I didn't realize that this was a big deal, something that got discussed—I was just being practical. I figured I'm going to be spending time with this guy, so I need a key. I also got him one of those Hallmark cards that said, “Love is where you find it… I’ll be here all day.” And I wrote in: “…and for the rest of your life.” Why he didn't run screaming in the other direction I can't imagine.
We were long distance for four years in college—he went to Dartmouth and I went to Harvard—and we had a commuter bus ticket from Boston to White River Junction, Vermont. He was a year ahead of me in school, so he graduated first. He went to medical school in New York, and I followed him to New York when I graduated college. We lived together for two years in medical school and then got married. I had basically asked him to marry me the summer we met; a mere six years later, he said yes. (But the company line is, he got down on bended knee and begged me to be his wife. That’s our story and we’re sticking to it.)
David and I have known each other 31 years out of the 47 I've been alive, and we celebrate our 25th wedding anniversary this June. He’s a doctor specializing in Infectious Disease at Beth Israel in downtown New York, and does a lot of clinical work and research with AIDS patients. David is the most amazing husband and father. We go to jazz clubs together, and read books and hang out with the kids. He is my bird—we mated for life.
If I had to have cancer, I couldn’t have picked a better partner to help me through it. Sometimes I think it’s harder on the spouse than it is on the cancer patient. My mission is focused and defined (survival), while David has to pick up the pieces, emotionally support me and the kids, and deal with all the logistics of daily life. I tell the women faculty that one of the most important decisions they make is about a life partner. Life throws you a lot of curve balls, and if you’re going to choose a partner, it should be someone who’ll actually help. Unfortunately, by the time they’re women faculty they’ve often made the choice already, and that ship has sailed. Sometimes I think the best thing we could do in the Women’s Office is to find a bunch of suitable Significant Others for our women faculty, but I bet that’s way beyond our budget.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 12, 2007 8:47 PM
To: Mel
Subject: Backstory: Dad
Dear Mel,
Thanks for your email. I loved the story of how your parents met when your father was pumping gas in a gas station and your mother was in the car with her step-mother. I’m sorry that they each lost a parent at a young age. It’s interesting that the lesson they taught you as a child was that everything you have could quickly be taken away from you. You asked about my parents, so I’ll tell you.
My father, Robert, grew up in Chicago in the Depression. His dad died when he was six years old. He and his mom lived with relatives who argued all the time. My father was a peace-loving man who would walk 20 miles to avoid an argument. Being dependent on cantankerous relatives taught him the importance of being able to make your own living. “Be financially independent” was the take-home message of my childhood. My dad was a gifted pianist and had studied with Vladimir Horowitz’s teacher. He could have been a concert pianist, but he hated to travel. More importantly, having grown up poor, he wanted a steady income.
The year my father graduated from high school, Sears/Roebuck gave a full tuition scholarship to the student who graduated first in his class from John Marshall High School, where my dad went. That person was my father. Being #2 would not have been good enough. That's how I learned to go for the top. He went to the University of Chicago (his home town) courtesy of Sears, joined the Army in World War II, and then attended Law School courtesy of the Army. When I went to college, it was a great source of pride to him that he could help pay for my education.
My dad was a law professor at Boston University. Law was an interesting career choice for a man who hated an argument. He practiced law only briefly. He mainly taught, and he was a wonderful teacher. He never pretended to know something he didn’t—instead, he asked someone who knew, looked it up, or figured it out himself. I learned that lesson from him, and it’s crucial, especially in medicine, where it can be life-threatening to pretend you know something you don’t.
He used to take me out on Sunday mornings to breakfast at a Jewish deli in Boston called the B&D, and he taught me how to do algebra problems on the back of a paper napkin. John is two years older than Mary. In one year, John will be twice as old as Mary is now. How old are John and Mary? And I was always amazed that my father knew so many Johns and so many Marys.
My father met my mother on a blind date when she was in law school and he was a practicing lawyer. A friend asked him if he wanted to meet a cute blonde or a big Israeli. He chose the big Israeli, Judith—that’s my mom. She’s tall, about 5’10”; he was 5’7”. She got the best grades in the class and worked the hardest. In a Master of Laws program they took after they got married, my mom studied like crazy; my dad just skimmed her notes the night before the exam. She got the highest score and he got the next highest—a hair lower, but with much less work. She laughs when she tells the story. I was a student in my mom’s tradition of relentless workaholism, while my husband was a more inspired and laid back student like my dad. My mom gave up law to be an artist, while my dad became a law professor.
Having pulled himself up from poverty, my father knew the value of hard work. He used to quote Thomas Edison, who said, “Genius is 1% inspiration and 99% perspiration.” We used to play the card game, “Hearts.” Usually, in Hearts, every heart you win counts one point against you, and the Queen of Spades counts 13 points against you. However, winning all of the hearts and the Queen of Spades is a landslide victory called “shooting the moon.” My dad always tried to shoot the moon, and usually succeeded. He taught me to try even when the outcome was uncertain. Again, he quoted Edison: when Edison’s initial attempts to invent the light bulb did not yield the results he hoped, he said, “I have not failed. I’ve just found 10,000 ways that don’t work.”
When I was in high school, Stanford was my top choice for college. I looked at the map of the country and saw that Palo Alto, California was about as far as you could go in the United States from Newton, Massachusetts, and figured that's what I had to do to be independent. Luckily I was rejected. Maybe they thought I was too young at 16. But I picked up the broken pieces of my life and went to Harvard. Proximity to my family turned out to be a wonderful thing. My father had a heart attack the summer after my freshman year in college and then multiple strokes after that, and spent much of the next few years in and out of the hospital. Because I was in school so close to home, I was able to spend precious time with him.
While I was growing up, my father loved to play the piano. I remember falling asleep at night listening to him playing Chopin Nocturnes (how many girls are lucky enough to get that kind of lullaby?). Encouraged by my father, I started playing the piano when I was six. When I was ten and again when I was twelve, I was the guest piano soloist with the Boston Symphony Orchestra. We had two pianos at home, a small upright and a big grand piano, both in our living room. We played piano duets together, for fun and in concerts. My favorite was the Schubert Fantastia in F Minor, where the voices of the two pianos echo and complement each other like two inseparable friends.
My father loved to read and analyze literature. He was a terrific writer and published short stories. A gentle soul, he wrote surprisingly dark stories, some of which reflected memories of German concentration camps that he had seen in World War II. He loved to read books about the process of writing, like The Technique of the Novel by Thomas Uzzell. I got my love of reading and writing from him, and have passed it on to Nate and Emma. He would have loved to write a book, but he got stuck in the outline phase. Years of outlines, covering one yellow legal pad after another with his exuberant handwriting in black ink.
I remember speaking to him one night right after he had the stroke that robbed him of his ability to play the piano. I have never heard a voice so broken by loss. He told me that he was sorry I had been born, because he did not want me to get hurt someday as he had been hurt. He said, "Why couldn't I have brought someone into the world who is heartless, cruel, cold, and unfeeling? The world is no place for sensitive people."
When he was in the hospital, he had slurred speech from the stroke, but his mind was lucid. I remember how some of the doctors and nurses treated him like he was stupid because he couldn’t enunciate his words clearly. I couldn't believe what a difference it made to his outlook and self-esteem whether he was treated with respect and compassion or with the assumption that he was an idiot.
My father had always wanted me to be a doctor. When I was six years old and playing the piano, people would ask my father, “What does Laura want to be?” And he said, "She wants to be a concert pianist, but medicine will be her back-up profession." I remember thinking, “I never said that. That must be what he wants.” When my father got sick during my college years, I gave up my physics major (which I had particularly enjoyed because I was the only girl in the class) and decided to be a doctor. I figured that’s what he wanted, and I loved him so much that I wanted it too. Maybe I could keep people from suffering the way he suffered.
My father taught me what it takes to master something. He used to practice the piano for hours daily. He used to say, “If I don’t practice one day, I know it; if I don’t practice two days, my friends know it; if I don’t practice three days, the audience knows it.” After the first stroke, he was tireless at doing his rehabilitation exercises. He spent hours relearning activities like putting on socks, tying his shoes, and walking. He never got impatient or frustrated; if he didn’t succeed, he would simply do it again. Once I went to rehab with him, and I remember how he asked the therapist to give him more exercises. “I’m very good at practicing,” he told her. He was right.
My father died right after I began my radiology residency in New York. He had spent much of the last few years of his life terrified of becoming a vegetable from another stroke. As it turned out, he worried for nothing—he died of a massive heart attack in the middle of a chess game, and he was a knight and a pawn ahead at the time. If my father had only known that would be his exit strategy, the last few years of his life would have been so much better! He would have particularly enjoyed that at the moment of his death during the chess game, he was winning.
He wanted to be cremated and have his ashes scattered in the ocean. On the morning of his funeral, I couldn't believe that the sun was shining as if nothing had happened. We rented a boat in Maine, and released his ashes with Beethoven’s 7th Symphony, 2nd movement (Allegro) playing. I chose that music because it combines major and minor keys, expressing how life is full of both sorrow and joy: it’s sad that he died, but it’s even more glorious that he lived. The score starts with a simple base line, and then progressively adds more and more instruments until there is a groundswell of unbelievably beautiful music, analogous to starting at birth, finding more complexity and joy at each level of life, and finally earning the ascent into heaven.
During the funeral, I was comforted by the fact that my father had met and liked David, and that he got to attend our wedding three years before he died. However, I was seized by the thought that now my kids (who were not even a twinkle in my eye at that point!) would never get to meet my father. It was an odd thought. Until then I hadn’t been certain about having children, but when I lost my father, I realized that having kids was no longer a question of whether, only when. I wish I could talk to my father again, even just for five minutes, and I wish he could meet Nate and Emma. Talk about a sense of humor. He had it all.
That’s my story. Maybe that’s how I'll tell it in the book. The book may end up being emails that I write and receive during this journey. If it's OK with you, I may include the picture you sent me of the seed becoming a plant that grew right through the roof of your hot tub. That was a beautiful picture and a beautiful story. I hope to be strong like the seed, and to break through hot tub covers in a single bound.
Love
Laura
____________________
From: Laura
Sent: Friday, April 13, 2007 5:36 AM
To: Mark
Subject: Pain: ideas
Hi Mark. I want to touch base with you in your capacity as a neurosurgeon about something important. I've had four Omaya taps for intrathecal chemo so far, so I speak from some experience. My lymphoma doc is a wonderful doctor and a terrific human being. The procedure itself, however, is painful.
Sometimes, as doctors, we feel that the most important aspect of treatment is killing the cancer, and if that means you feel a little pain, you should “suck it up.” I agree that if killing the cancer requires pain, suck it up. But if the cancer can be cured in a way that is painful or less painful but equally effective, the less painful method is the clear choice.
There is a feeling (of which I have also been guilty, when I got to play doctor) that focusing on the pain distracts from the major mission of curing the cancer. That's wrong. Even if the physician who has primary responsibility for killing the cancer doesn't want to be "distracted" by thinking about pain, we should make it a priority that someone on the team is focused on pain relief. We should not tolerate errors in pain management any more than we would tolerate giving the wrong dose of chemo, or treating with an improper antibiotic, or performing surgery on the wrong side of the body.
I have specific suggestions for pain prevention when putting a needle into an Omaya. For the past few decades in Breast Imaging, we’ve been doing pre-operative needle localization procedures, in which we place a wire in a woman's breast pre-operatively to guide the surgeon towards a breast lesion that can’t be felt. Before the loc, we spray the area of the breast with a spray called "Gebauer's Ethyl Chloride Medium Stream Spray," which is considered a "topical anesthetic skin refrigerant" and works instantly. Another good local anesthetic is Emla cream. It can be applied over the area to be accessed (eg the Omaya or Mediport), but unlike the spray, the Emla cream requires half an hour to work.
Since you put the Omayas in during neurosurgery, is there a way you can convey in the post-op instructions the recommendation for numbing prior to putting a needle into the Omaya to remove fluid or give chemo? You can even suggest the Ethyl Chloride spray and the Emla cream. Either the treating oncologist could give the patient the necessary prescriptions, or we can make sure that the meds are available in all the chemo suites so that they can be used to increase patient comfort for all needling procedures. The spray or Emla cream could also be used prior to other needling procedures elsewhere in the body, like accessing Mediports. After the anesthesia, the area can be prepped with sterile technique, so it shouldn’t increase the chance of infection.
Another thing. I learned through personal experience that the likelihood of vomiting is directly related to the speed of intrathecal injection. Sam, my neurologist, confirmed that if it's injected too quickly, once it hits the 4th ventricle it tickles the vomiting center and you puke. If we're rewriting the post-Omaya instructions, can we include the recommendation to inject slowly, and maybe even give a guideline as to the maximum suggested injection rate? Most intrathecal chemo patients probably believe that vomiting just goes with the territory, and would not think to ask the physician to slow down. We need to write it into the guidelines to make it happen.
I’d appreciate your thoughts. I am no wimp and if pain is necessary to cure my lymphoma, I’ll endure it. But if we can make it less painful or even painless, we should go for it. Even a small amount of pain per procedure over a long course of treatment adds up, and gives those individuals with cancer yet another thing to dread. It is our mission not only to cure cancer but also to relieve suffering. We can be the best at both. Let's do it. Then I will know that my lymphoma is for a good reason, and I will find the justice in the universe that I perpetually seek.
Best wishes
And in a spirit of making things better (always)
Laura
Chapter 9: Blurry Vision
Get your priorities straight.
____________________
From: Laura
Sent: Friday, April 13, 2007 8:26 PM
To: Sam
Subject: Blurry vision: questions
Hi Sam. Question for you about my eyes—I have worsening blurry vision the last few days, which makes it difficult to read (but you notice it doesn't stop me from sending an email!).
I've been near-sighted requiring glasses since I was six years old. I started to have trouble reading several months ago, and now have "progressives,” which I gather are the new “bifocals.” When I began having the neuro symptoms that led to the eventual diagnosis of lymphoma, I saw Jack of Ophthalmology here, who saw a few cells in my eyes that were suspicious for lymphoma (apparently that’s reasonably frequent if you have lymphoma in the CSF). .
Now I've finished four intrathecal methotrexates, two IV R-CHOPS, and one high-dose IV methotrexate, with the most recent intrathecal methotrexate and IV R-CHOP being this past Tuesday 4/10 (which I tolerated fine). In the past several days I've noticed a worsening of blurry vision, which makes it difficult to read. Could this be related to the steroids (I'm on day three of five days of oral prednisone through Sunday 4/15)? If it is due to the prednisone, is the blurry vision likely to get better when I’m off prednisone? I’m especially concerned because my eyes are key in radiology, especially breast imaging—you have to be sharp if you’re going to pick up the tiny microcalcifications that may be the only sign of an early breast cancer. Alternatively, could the visual blurring be due to worsening lymphoma of the eyes, especially in light of the abnormal cells in my eyes before I began treatment?
Should I have labs checked (and if so, which labs and when, and can you put in and release the orders)? My next scheduled appointment with my oncologist is on Thursday 4/19 at noon, when I am scheduled to get more intrathecal chemo. Should I make another appointment with Jack, see my outside eye doctor to get my prescription checked, or just wait until Thursday and see my oncologist then?
Thanks for your advice!
Laura
____________________
From: Laura
Sent: Saturday, April 14, 2007 4:32 AM
To: Jennifer
Subject: Saturday
Hi Jen. We had a great day yesterday. In the morning, David rented a car to take Emma and me to a parent-teacher conference at Emma’s school. I wore a hat called the Gordon, which was a sewn straw fedora in a muted pink with flip brim and silk gray trim.
I was so proud of Emma at the conference. Going from elementary school to high school is a big transition, even without having a sick mom, and she’s been handling it beautifully. Emma came to the conference with us, and became a little shy when her advisor read all the fabulous comments from her teachers. Afterwards, Emma went to class. David dropped me off at the hospital and went to work.
The main event on my calendar at work today was a meeting about “the MSK Nanny Resource,” an internal list-serve we’re creating to address the issue of child care for employees. We brainstormed this idea with Amy and Nancy, my colleagues in Work/Life, after we collaborated on a seminar called "How to Find a Nanny." On the Nanny Resource, employees can post if they want to hire or share a nanny, or if they have a great nanny they no longer need. We met with the information technology guy, Kevin, who was helpful. We left with a list of things to do, all doable. I think it will happen!
Every month we put a new “Quote of the Month” on the Women Faculty Affairs website. This month we’re posting a poem by Emily Dickinson. I’m sending it to you below, because I thought you’d like it.
*******************************
Hope is the thing with feathers
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
*******************************
Love
Laura
____________________
From: Laura
Sent: Sunday, April 15, 2007 7:29 PM
To: Jennifer
Subject: Bird by Bird
Hi Jen. Today I spent most of the day rereading one of my favorite books, Anne Lamott’s Bird by Bird. Although the book is ostensibly about writing, it might just as well be about dealing with cancer. The title story is derived from an incident in which the author’s big brother, as a kid, was assigned to write an essay about the birds of North America. He found the task overwhelming. When his father asked him what the problem was, Lamott’s brother said that there were a lot of birds in North America. His father looked at him reassuringly and said, “Bird by bird, buddy. Just take it bird by bird.”
The story reminds me of advice Maureen gave me shortly after I was diagnosed, when I was considering declining treatment. She told me I don’t have to agree to the whole deal; I could just agree to start, and then take it one day at a time. The advice was comforting. This approach let me maintain the illusion of control (“it’s no illusion; you ARE in control,” Maureen would say). It also broke up the impossible task of six months of chemo into a series of manageable tasks, dealing with each individual day. I would do it bird by bird.
Love
Laura
____________________
From: Laura
Sent: Monday, April 16, 2007 4:56 AM
To: Jennifer
Subject: Broadway
Hi Jen. Q and I went to see the Eugene O’Neill play “Moon for the Misbegotten” starring Kevin Spacey on Broadway yesterday, and it was fabulous. I decided to wear a hat that didn’t go up too high on my head, so I wouldn’t block the view of the person sitting behind me. I chose the Reese paisley, which has a fabric slouch crown with a split cuff brim and a “self trim,” which means part of the same fabric as the hat serves as the trim. The fabric is a subtle silver, beige, and black paisley pattern, with a small sewn silk flower at the side.
The play was great, but it desperately needed editing. If I were an English professor, I would assign my students to cut an hour off of it—the run time was almost 3 hours. It took me two nausea pills at $40/pill (that Zofran is worth its weight in gold) to get through the play. If the play had been an hour shorter, I could have done it in one nausea pill. Do you think the Estate of Eugene O'Neill would listen to reason? They owe me 40 bucks.
The hardest part of the outing was afterwards, when Q and I went to get a cab. It was rainy and the streets were slippery. As I was getting into the cab I slipped and almost fell, and then hit my head (the part with the Omaya) against the cab. I started to cry. Q helped me up and pulled me into the cab and gave me a hug, which I desperately needed. I try to be brave and optimistic about all this, but the bottom line is that cancer makes you feel vulnerable, and I used to feel invincible.
I don’t remember if I told you—I started having severe visual blurring, which is bothersome, because reading and writing are integral in my life right now. The blurring began around the time I started my latest course of prednisone. Sam, my neurologist, said that visual blurring is common on prednisone. Apparently the symptoms can be triggered by either raising or lowering the steroid dose but usually disappear after steroids are stopped. Steroids can also cause cataracts or glaucoma. These possible side effects are not good news, but all of them are better than having the visual blurring represent worsening lymphoma in my eyes. Yesterday I took my last dose of prednisone for the month, so hopefully the symptoms will improve. I’m still going to see the eye doctor to make sure.
My father is on my mind a lot these days. I’m listening to piano music that he played, like Schumann’s Kreisleriana; he especially liked part 1, for which the tempo marking is “agitatissimo,” or very agitated. The piece is fiendishly difficult, requiring a massive reach for both hands. My father used to tell me how Schumann injured his right hand, possibly as the result of a mechanical device he used to increase the strength, independence, and span of his fingers. Apparently Schumann became psychologically unstable, and spent the last two years of his life in a mental institution. Schumann’s wife, Clara, an excellent pianist who was the daughter of Schumann’s boyhood piano teacher, was the one who held it together in their family. Any frustration my father ever felt was released in the Olympic-level workout of the Kleisleriana.
My father loved to play Beethoven sonatas, especially the ones that were the most technically challenging. I’ve been listening to one of his favorites, Beethoven’s “Appassionata” Sonata #23 Op. 57. I remember him playing the third movement, with a tempo marking “allegro ma non troppo” (fast but not too fast). As I watched his fingers fly across the keys, I doubted that it was possible to play it any faster. My dad used to tell me that Beethoven started to lose his hearing in his twenties and was completely deaf by age 50. It struck me as ironic that a man who was so passionate about composing music lost his hearing. I thought about Beethoven going deaf when my father lost his manual dexterity and his piano playing after a stroke.
I’ve been listening to Mozart sonatas that my father and I played together. One of my father’s favorite books was a biography of Mozart by Marcia Davenport. My father loved to tell me stories about Wolfgang Amadeus Mozart: when Mozart was three, he watched his older sister Nannerl play the piano; when he was four, his father Leopold started to give him piano lesions; he began composing at age five; and he spent his subsequent childhood traveling with Leopold all over Europe, performing as a child prodigy. My dad always said that Mozart wrote more than 600 priceless compositions, but died “a poor churchmouse” at age 35. I knew that if my dad had been Wolfgang’s father, he would have encouraged him to find a better paying job.
One of the first pieces my father and I played together was the Mozart Sonata for 1 piano, 4 hands, in D Major, KV 381/123a. I used to laugh when our hands got tangled up as one of us reached over the other for a trill or arpeggio outside of our own “turf.” As I got older, we each wanted to have an entire keyboard to ourselves, so we preferred music for two pianos, like the Mozart D Major Piano Sonata, K. 448. To this day, D Major still feels to me like a joyful key of innocence and youth. Listening to the music my dad played, and especially to the music we played together, makes me feel like he’s up there looking out for me.
Love
Laura
____________________
From: Laura
Sent: Monday, April 16, 2007 5:22 PM
To: Jennifer
Subject: Emily Dickinson
Hi Jen. I worked in the Women’s Office today. I wore a hat called the Roz, a two-piece cloche in black and brown with a curved pheasant feather rising up from the side. On the way to a meeting, I was in the elevator with an elderly couple. The wife was looking at me and speaking to her husband in Italian. I smiled at her and said, “You’re talking about my hat, aren’t you?” And she said to me in a thick Italian accent, “Yes. I love your hat!” When I’m wearing these hats, I never have to worry about making conversation.
I found the perfect Emily Dickinson poem that captures my feelings about how I want to use my experience with pain to help others. Here's the poem:
*************************************
If I can stop one heart from breaking
If I can stop one heart from breaking
I shall not live in vain;
If I can ease one life the aching
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.
**************************************
Love
Laura
____________________
From: PWFA/President's Office
Sent: Monday, April 16, 2007 12:48 PM
To: All Women Faculty
Subject: Athena Tuesday 4/24, 5 pm
To Women Faculty:
Please come to our next meeting of ATHENA, our informal group for women faculty! Info is:
ATHENA, Tues 4/24 5-7 pm, Faculty Club
Come for a few minutes or stay longer, if you like! Refreshments will be provided.
I hope you’ll join us!
Best wishes
Laura
Laura Liberman MD
Director, Program for Women Faculty Affairs
____________________
From: Laura
Sent: Monday, April 16, 2007 7:58 PM
To: Jimmie
Subject: Your amazing book!
Hi Jimmie. Thank you for sending me your amazing, wonderful, awesome, incredible book, The Human Side of Cancer, which is exactly what I need to read right now! I feel like you wrote it for me. After I finish reading it, can we talk? You are a fantastic writer!
Also, thanks for sending me the Stephen Gould book, Full House: The Spread of Excellence from Plato to Darwin. I especially liked the chapter called “Case One, A Personal Story: Where any measure of a central tendency acts as a harmful abstraction, and variation stands out as the only meaningful reality.” Basically, Gould seems to be saying that even if the median survival of your cancer is 50% at one year, that means half of the people with that cancer live less than one year, but half live more—and some people may live ten, twenty, thirty years or longer. This news is particularly good for people like me, who are told that their illness has a lousy median survival. When I saw Figure 7 on page 55, I imagined myself way on the right, at the highest end of the survival bell curve, waving and smiling.
Your book and Gould’s should be recommended for every cancer patient.
Best wishes
Laura
____________________
From: Laura
Sent: Tuesday, April 17, 2007 2:13 AM
To: Jennifer
Subject: Nate’s college forms
Hi Jen. Nate is working on his college applications. We started to talk about colleges last summer (the summer before his junior year) when we were on vacation in Hilton Head, South Carolina. Nate and I biked over to the only tiny book store in town and bought the one copy of the Fiske Guide to Colleges. I suggested that Nate make an Excel spread sheet listing the colleges he was considering and their characteristics, to organize his thinking. It was an opportunity for me to teach Nate an important lesson: many of life’s problems can be solved, or at least helped, by a good Excel spreadsheet.
Today Nate started to work on the nitty gritty of applying to college. The process at Nate’s school is very organized. They have all these forms and questionnaires for the students to fill out in preparation for a meeting with the college counselor. Students have to express their interests, talk about the subjects they enjoy, and describe what their extracurricular activities have been. The parents have to fill out forms too. Nate’s interests have been non-traditional, centering on teaching and community service.
Nate’s first exposure to working with kids was when he was in fifth grade, and his elementary school partnered each fifth grader to a first grader in their “buddy class.” The summer after eighth grade, Nate was a camp counselor for a group of 5-year-olds. I know the students adored him because one summer day a 5-year-old girl in his group recognized him as we were walking down the block and ran up to him to give him a hug. She hugged his knees, because they were as high as she could reach. The girl’s mom, who recognized Nate, said to her daughter, “Do you know who that is?” And the girl said, “That’s Nate, my counselor!” as if he were a rock star.
When Nate went to high school, he started tutoring third-graders in a bilingual Spanish/English public school on the West Side. One student drew a crayon picture of Nate as a superhero, complete with uniform, sword, and shield; it’s still hanging on Nate’s wall. Nate told us about a girl in the class who failed a math test. On one question in which she was asked to draw a triangle with vertices C, A, T, she had drawn a cat, not a triangle. Instead of berating her, Nate commented on the realism of her drawing, and asked, do you have a cat? What’s the cat’s name? What kind of cat is it? The girl was so engaged that when he started to explain the math to her, she listened.
During the summer after he finished ninth grade, Nate volunteered at a neighborhood soup kitchen that gave groceries to individuals and families in need. I thought it was just a summer gig, but he kept it up weekly throughout high school. He rose through the ranks and eventually ran the line for distributing food to the elderly and disabled. I was proud of his dedication. During the subsequent summer and school year, he also volunteered to teach in a program to help low-income New York City elementary school kids prepare to apply to challenging public or private high schools. A student of Nate’s became one of the first three students in the program to get admitted to a New York Independent School. Nate described these experiences in his college essay.
I like the way Nate writes: get your thoughts down on paper first and edit later. That’s a method Anne Lamott suggests in the chapter “Shitty First Drafts” in her book, Bird by Bird. I think getting any thoughts down on paper and then cleaning it up is a great strategy because it takes an impossible task (taking the blank page and filling it with a beautiful story) and breaks it into two smaller, easier tasks (writing the “shitty first draft,” and then editing work you’ve already written).
It wasn’t only Nate writing today—David and I had to fill out parent college forms. In addition to the name, rank, and serial number stuff, they asked us to specifically name where we would like him to apply to college. We wrote down that we wanted him to go where he wants to go, so he can be happy. I don’t understand pressuring your kids to go to the same school you did. Your kids are not you; they have their own tastes, interests, and abilities, and need to find schools that are right for them.
The college application process with Nate has taught me that parenting a teenager is like getting a bird to eat out of your hand. You love the bird; you want to feed the bird; you have only the bird's best interests at heart; you would never, ever hurt the bird. But if you make big sudden movements, the bird will fly away. You have to be casual. You stroll over, toss out a few seeds, and step back, like you don't even notice. Maybe he won't come at first. But then each day you put out a few more seeds and step back. Eventually he may come, and maybe at some point (if you're very lucky!) he'll take a seed before he bolts and then another and another and finally one day you'll feel the tickle of his beak in your hand before he flies away.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 17, 2007 9:40 AM
To: Maureen
Subject: Athena
Hi Maureen. Question for you. There is an Athena gathering on Tues 4/24 from 5-7 pm in the Faculty Club. I am getting admitted for chemo that day. Can you lead this Athena? There are a few announcements to make, and basically I want someone to be there to make people feel welcome. Would this be OK?
Do you want to pop by here this morning (I'm in the women's office) and catch up for a few? I'm going to the Junior Faculty Council meeting at noon.
I’m doing OK. Intrathecal chemo Thursday, another admission Tuesday. Have finished seven of 18 doses of chemo—only 11 left. After the next admission is done, I'll have finished nine of 18 chemos—the halfway mark.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 19, 2007 2:08 AM
To: Jennifer
Subject: Seminar
Hi Jen. I loved what you said about how nobody calls you Jenny. It's like with Nate. When he was born, David and I named him Nathaniel, and figured we would call him by that name. But from the moment of his birth, he’s been such a thorough and complete Nate. We have a video of bringing him home from the hospital right after he was born. We carried him over the threshold and said, "Welcome home, Nathaniel." I don’t think we’ve called him Nathaniel since. I remember once when he was three, a friend’s mom called him “Nathaniel.” Nate said, "Don't call me Nathaniel. My name is Nate!" I was shocked that my three-year-old was so certain of his own identity. On rare occasions, some people call him Nathaniel, but he's mostly Nate to those of us who know him best.
I went to a fabulous career development seminar today. I wore a hat called the Tracy, which had a beige straw cloth square crown with a large down brim and muted green hand rolled roses. The seminar was jointly run by Cornell, Columbia, Sinai, Einstein, and NYU. Sometimes these seminars get a little whiney, but this one had the best speakers, and there were terrific people to meet.
A woman who is Director of Diversity at Columbia University spoke about diversity in the workplace, and was absolutely spectacular! She talked about how people (women and men) are looking for balance in their lives now, and it's no longer acceptable for many of them to work 24/7. I know this to be true. I also think we pay the consequences for our overwork. Relentless stress takes its toll on our psyches, bodies, spirits, and families.
We have to figure out a way to let people work but also let their work lives fit with the rest of their lives. Even if the goal is simply to get as much work as possible out of a person, it is better strategy to allow them to try to make the pieces fit. Life is a marathon, not a sprint. If you give all your steam on the first leg of the relay you'll have nothing left for the finale. I know that this is true, but how do we make it a reality when we are all such Type A personalities, want nothing short of perfection, and work in a cancer hospital where the stakes are high and mistakes can have lethal consequences?
Another amazing speaker at the conference was named Catherine J. Morrison, J.D. She gave two terrific sessions, a general lecture on negotiation and a seminar on conflict resolution. I especially liked her Frank Zappa quote: “Reality is an optional experience!” I’m going to follow up with her and see if she can give a session for our women faculty.
At the seminar, a female junior faculty member who took a grantwriting course sponsored by Women Faculty Affairs just found out that she was awarded her grant from the National Institutes of Health! Isn't that fantastic, wonderful news? This Women Faculty Affairs job is great—I get to play Point Guard. I feel like Teresa Weatherspoon of the New York Liberty in the WNBA: I get the ball to the Center, and she gets it into the net.
The seminar was held at Columbia University, which is gorgeous—a beautiful college campus right in the middle of New York City. After the seminar, I went to the college bookstore and bought a CD of classic Beatles tunes to put on my iPod. I’m still listening to a lot of music these days, especially when I'm in the hospital or getting chemo.
The only bad thing about today is that my vision is still blurry. It’s hard to see the traffic signs across the street. I never realized how scary it is to go out in the world unable to see.
Love
Laura
____________________
From: Laura
Sent: Friday, April 13, 2007 8:26 PM
To: Sam
Subject: Blurry vision: questions
Hi Sam. Question for you about my eyes—I have worsening blurry vision the last few days, which makes it difficult to read (but you notice it doesn't stop me from sending an email!).
I've been near-sighted requiring glasses since I was six years old. I started to have trouble reading several months ago, and now have "progressives,” which I gather are the new “bifocals.” When I began having the neuro symptoms that led to the eventual diagnosis of lymphoma, I saw Jack of Ophthalmology here, who saw a few cells in my eyes that were suspicious for lymphoma (apparently that’s reasonably frequent if you have lymphoma in the CSF). .
Now I've finished four intrathecal methotrexates, two IV R-CHOPS, and one high-dose IV methotrexate, with the most recent intrathecal methotrexate and IV R-CHOP being this past Tuesday 4/10 (which I tolerated fine). In the past several days I've noticed a worsening of blurry vision, which makes it difficult to read. Could this be related to the steroids (I'm on day three of five days of oral prednisone through Sunday 4/15)? If it is due to the prednisone, is the blurry vision likely to get better when I’m off prednisone? I’m especially concerned because my eyes are key in radiology, especially breast imaging—you have to be sharp if you’re going to pick up the tiny microcalcifications that may be the only sign of an early breast cancer. Alternatively, could the visual blurring be due to worsening lymphoma of the eyes, especially in light of the abnormal cells in my eyes before I began treatment?
Should I have labs checked (and if so, which labs and when, and can you put in and release the orders)? My next scheduled appointment with my oncologist is on Thursday 4/19 at noon, when I am scheduled to get more intrathecal chemo. Should I make another appointment with Jack, see my outside eye doctor to get my prescription checked, or just wait until Thursday and see my oncologist then?
Thanks for your advice!
Laura
____________________
From: Laura
Sent: Saturday, April 14, 2007 4:32 AM
To: Jennifer
Subject: Saturday
Hi Jen. We had a great day yesterday. In the morning, David rented a car to take Emma and me to a parent-teacher conference at Emma’s school. I wore a hat called the Gordon, which was a sewn straw fedora in a muted pink with flip brim and silk gray trim.
I was so proud of Emma at the conference. Going from elementary school to high school is a big transition, even without having a sick mom, and she’s been handling it beautifully. Emma came to the conference with us, and became a little shy when her advisor read all the fabulous comments from her teachers. Afterwards, Emma went to class. David dropped me off at the hospital and went to work.
The main event on my calendar at work today was a meeting about “the MSK Nanny Resource,” an internal list-serve we’re creating to address the issue of child care for employees. We brainstormed this idea with Amy and Nancy, my colleagues in Work/Life, after we collaborated on a seminar called "How to Find a Nanny." On the Nanny Resource, employees can post if they want to hire or share a nanny, or if they have a great nanny they no longer need. We met with the information technology guy, Kevin, who was helpful. We left with a list of things to do, all doable. I think it will happen!
Every month we put a new “Quote of the Month” on the Women Faculty Affairs website. This month we’re posting a poem by Emily Dickinson. I’m sending it to you below, because I thought you’d like it.
*******************************
Hope is the thing with feathers
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
*******************************
Love
Laura
____________________
From: Laura
Sent: Sunday, April 15, 2007 7:29 PM
To: Jennifer
Subject: Bird by Bird
Hi Jen. Today I spent most of the day rereading one of my favorite books, Anne Lamott’s Bird by Bird. Although the book is ostensibly about writing, it might just as well be about dealing with cancer. The title story is derived from an incident in which the author’s big brother, as a kid, was assigned to write an essay about the birds of North America. He found the task overwhelming. When his father asked him what the problem was, Lamott’s brother said that there were a lot of birds in North America. His father looked at him reassuringly and said, “Bird by bird, buddy. Just take it bird by bird.”
The story reminds me of advice Maureen gave me shortly after I was diagnosed, when I was considering declining treatment. She told me I don’t have to agree to the whole deal; I could just agree to start, and then take it one day at a time. The advice was comforting. This approach let me maintain the illusion of control (“it’s no illusion; you ARE in control,” Maureen would say). It also broke up the impossible task of six months of chemo into a series of manageable tasks, dealing with each individual day. I would do it bird by bird.
Love
Laura
____________________
From: Laura
Sent: Monday, April 16, 2007 4:56 AM
To: Jennifer
Subject: Broadway
Hi Jen. Q and I went to see the Eugene O’Neill play “Moon for the Misbegotten” starring Kevin Spacey on Broadway yesterday, and it was fabulous. I decided to wear a hat that didn’t go up too high on my head, so I wouldn’t block the view of the person sitting behind me. I chose the Reese paisley, which has a fabric slouch crown with a split cuff brim and a “self trim,” which means part of the same fabric as the hat serves as the trim. The fabric is a subtle silver, beige, and black paisley pattern, with a small sewn silk flower at the side.
The play was great, but it desperately needed editing. If I were an English professor, I would assign my students to cut an hour off of it—the run time was almost 3 hours. It took me two nausea pills at $40/pill (that Zofran is worth its weight in gold) to get through the play. If the play had been an hour shorter, I could have done it in one nausea pill. Do you think the Estate of Eugene O'Neill would listen to reason? They owe me 40 bucks.
The hardest part of the outing was afterwards, when Q and I went to get a cab. It was rainy and the streets were slippery. As I was getting into the cab I slipped and almost fell, and then hit my head (the part with the Omaya) against the cab. I started to cry. Q helped me up and pulled me into the cab and gave me a hug, which I desperately needed. I try to be brave and optimistic about all this, but the bottom line is that cancer makes you feel vulnerable, and I used to feel invincible.
I don’t remember if I told you—I started having severe visual blurring, which is bothersome, because reading and writing are integral in my life right now. The blurring began around the time I started my latest course of prednisone. Sam, my neurologist, said that visual blurring is common on prednisone. Apparently the symptoms can be triggered by either raising or lowering the steroid dose but usually disappear after steroids are stopped. Steroids can also cause cataracts or glaucoma. These possible side effects are not good news, but all of them are better than having the visual blurring represent worsening lymphoma in my eyes. Yesterday I took my last dose of prednisone for the month, so hopefully the symptoms will improve. I’m still going to see the eye doctor to make sure.
My father is on my mind a lot these days. I’m listening to piano music that he played, like Schumann’s Kreisleriana; he especially liked part 1, for which the tempo marking is “agitatissimo,” or very agitated. The piece is fiendishly difficult, requiring a massive reach for both hands. My father used to tell me how Schumann injured his right hand, possibly as the result of a mechanical device he used to increase the strength, independence, and span of his fingers. Apparently Schumann became psychologically unstable, and spent the last two years of his life in a mental institution. Schumann’s wife, Clara, an excellent pianist who was the daughter of Schumann’s boyhood piano teacher, was the one who held it together in their family. Any frustration my father ever felt was released in the Olympic-level workout of the Kleisleriana.
My father loved to play Beethoven sonatas, especially the ones that were the most technically challenging. I’ve been listening to one of his favorites, Beethoven’s “Appassionata” Sonata #23 Op. 57. I remember him playing the third movement, with a tempo marking “allegro ma non troppo” (fast but not too fast). As I watched his fingers fly across the keys, I doubted that it was possible to play it any faster. My dad used to tell me that Beethoven started to lose his hearing in his twenties and was completely deaf by age 50. It struck me as ironic that a man who was so passionate about composing music lost his hearing. I thought about Beethoven going deaf when my father lost his manual dexterity and his piano playing after a stroke.
I’ve been listening to Mozart sonatas that my father and I played together. One of my father’s favorite books was a biography of Mozart by Marcia Davenport. My father loved to tell me stories about Wolfgang Amadeus Mozart: when Mozart was three, he watched his older sister Nannerl play the piano; when he was four, his father Leopold started to give him piano lesions; he began composing at age five; and he spent his subsequent childhood traveling with Leopold all over Europe, performing as a child prodigy. My dad always said that Mozart wrote more than 600 priceless compositions, but died “a poor churchmouse” at age 35. I knew that if my dad had been Wolfgang’s father, he would have encouraged him to find a better paying job.
One of the first pieces my father and I played together was the Mozart Sonata for 1 piano, 4 hands, in D Major, KV 381/123a. I used to laugh when our hands got tangled up as one of us reached over the other for a trill or arpeggio outside of our own “turf.” As I got older, we each wanted to have an entire keyboard to ourselves, so we preferred music for two pianos, like the Mozart D Major Piano Sonata, K. 448. To this day, D Major still feels to me like a joyful key of innocence and youth. Listening to the music my dad played, and especially to the music we played together, makes me feel like he’s up there looking out for me.
Love
Laura
____________________
From: Laura
Sent: Monday, April 16, 2007 5:22 PM
To: Jennifer
Subject: Emily Dickinson
Hi Jen. I worked in the Women’s Office today. I wore a hat called the Roz, a two-piece cloche in black and brown with a curved pheasant feather rising up from the side. On the way to a meeting, I was in the elevator with an elderly couple. The wife was looking at me and speaking to her husband in Italian. I smiled at her and said, “You’re talking about my hat, aren’t you?” And she said to me in a thick Italian accent, “Yes. I love your hat!” When I’m wearing these hats, I never have to worry about making conversation.
I found the perfect Emily Dickinson poem that captures my feelings about how I want to use my experience with pain to help others. Here's the poem:
*************************************
If I can stop one heart from breaking
If I can stop one heart from breaking
I shall not live in vain;
If I can ease one life the aching
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.
**************************************
Love
Laura
____________________
From: PWFA/President's Office
Sent: Monday, April 16, 2007 12:48 PM
To: All Women Faculty
Subject: Athena Tuesday 4/24, 5 pm
To Women Faculty:
Please come to our next meeting of ATHENA, our informal group for women faculty! Info is:
ATHENA, Tues 4/24 5-7 pm, Faculty Club
Come for a few minutes or stay longer, if you like! Refreshments will be provided.
I hope you’ll join us!
Best wishes
Laura
Laura Liberman MD
Director, Program for Women Faculty Affairs
____________________
From: Laura
Sent: Monday, April 16, 2007 7:58 PM
To: Jimmie
Subject: Your amazing book!
Hi Jimmie. Thank you for sending me your amazing, wonderful, awesome, incredible book, The Human Side of Cancer, which is exactly what I need to read right now! I feel like you wrote it for me. After I finish reading it, can we talk? You are a fantastic writer!
Also, thanks for sending me the Stephen Gould book, Full House: The Spread of Excellence from Plato to Darwin. I especially liked the chapter called “Case One, A Personal Story: Where any measure of a central tendency acts as a harmful abstraction, and variation stands out as the only meaningful reality.” Basically, Gould seems to be saying that even if the median survival of your cancer is 50% at one year, that means half of the people with that cancer live less than one year, but half live more—and some people may live ten, twenty, thirty years or longer. This news is particularly good for people like me, who are told that their illness has a lousy median survival. When I saw Figure 7 on page 55, I imagined myself way on the right, at the highest end of the survival bell curve, waving and smiling.
Your book and Gould’s should be recommended for every cancer patient.
Best wishes
Laura
____________________
From: Laura
Sent: Tuesday, April 17, 2007 2:13 AM
To: Jennifer
Subject: Nate’s college forms
Hi Jen. Nate is working on his college applications. We started to talk about colleges last summer (the summer before his junior year) when we were on vacation in Hilton Head, South Carolina. Nate and I biked over to the only tiny book store in town and bought the one copy of the Fiske Guide to Colleges. I suggested that Nate make an Excel spread sheet listing the colleges he was considering and their characteristics, to organize his thinking. It was an opportunity for me to teach Nate an important lesson: many of life’s problems can be solved, or at least helped, by a good Excel spreadsheet.
Today Nate started to work on the nitty gritty of applying to college. The process at Nate’s school is very organized. They have all these forms and questionnaires for the students to fill out in preparation for a meeting with the college counselor. Students have to express their interests, talk about the subjects they enjoy, and describe what their extracurricular activities have been. The parents have to fill out forms too. Nate’s interests have been non-traditional, centering on teaching and community service.
Nate’s first exposure to working with kids was when he was in fifth grade, and his elementary school partnered each fifth grader to a first grader in their “buddy class.” The summer after eighth grade, Nate was a camp counselor for a group of 5-year-olds. I know the students adored him because one summer day a 5-year-old girl in his group recognized him as we were walking down the block and ran up to him to give him a hug. She hugged his knees, because they were as high as she could reach. The girl’s mom, who recognized Nate, said to her daughter, “Do you know who that is?” And the girl said, “That’s Nate, my counselor!” as if he were a rock star.
When Nate went to high school, he started tutoring third-graders in a bilingual Spanish/English public school on the West Side. One student drew a crayon picture of Nate as a superhero, complete with uniform, sword, and shield; it’s still hanging on Nate’s wall. Nate told us about a girl in the class who failed a math test. On one question in which she was asked to draw a triangle with vertices C, A, T, she had drawn a cat, not a triangle. Instead of berating her, Nate commented on the realism of her drawing, and asked, do you have a cat? What’s the cat’s name? What kind of cat is it? The girl was so engaged that when he started to explain the math to her, she listened.
During the summer after he finished ninth grade, Nate volunteered at a neighborhood soup kitchen that gave groceries to individuals and families in need. I thought it was just a summer gig, but he kept it up weekly throughout high school. He rose through the ranks and eventually ran the line for distributing food to the elderly and disabled. I was proud of his dedication. During the subsequent summer and school year, he also volunteered to teach in a program to help low-income New York City elementary school kids prepare to apply to challenging public or private high schools. A student of Nate’s became one of the first three students in the program to get admitted to a New York Independent School. Nate described these experiences in his college essay.
I like the way Nate writes: get your thoughts down on paper first and edit later. That’s a method Anne Lamott suggests in the chapter “Shitty First Drafts” in her book, Bird by Bird. I think getting any thoughts down on paper and then cleaning it up is a great strategy because it takes an impossible task (taking the blank page and filling it with a beautiful story) and breaks it into two smaller, easier tasks (writing the “shitty first draft,” and then editing work you’ve already written).
It wasn’t only Nate writing today—David and I had to fill out parent college forms. In addition to the name, rank, and serial number stuff, they asked us to specifically name where we would like him to apply to college. We wrote down that we wanted him to go where he wants to go, so he can be happy. I don’t understand pressuring your kids to go to the same school you did. Your kids are not you; they have their own tastes, interests, and abilities, and need to find schools that are right for them.
The college application process with Nate has taught me that parenting a teenager is like getting a bird to eat out of your hand. You love the bird; you want to feed the bird; you have only the bird's best interests at heart; you would never, ever hurt the bird. But if you make big sudden movements, the bird will fly away. You have to be casual. You stroll over, toss out a few seeds, and step back, like you don't even notice. Maybe he won't come at first. But then each day you put out a few more seeds and step back. Eventually he may come, and maybe at some point (if you're very lucky!) he'll take a seed before he bolts and then another and another and finally one day you'll feel the tickle of his beak in your hand before he flies away.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 17, 2007 9:40 AM
To: Maureen
Subject: Athena
Hi Maureen. Question for you. There is an Athena gathering on Tues 4/24 from 5-7 pm in the Faculty Club. I am getting admitted for chemo that day. Can you lead this Athena? There are a few announcements to make, and basically I want someone to be there to make people feel welcome. Would this be OK?
Do you want to pop by here this morning (I'm in the women's office) and catch up for a few? I'm going to the Junior Faculty Council meeting at noon.
I’m doing OK. Intrathecal chemo Thursday, another admission Tuesday. Have finished seven of 18 doses of chemo—only 11 left. After the next admission is done, I'll have finished nine of 18 chemos—the halfway mark.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 19, 2007 2:08 AM
To: Jennifer
Subject: Seminar
Hi Jen. I loved what you said about how nobody calls you Jenny. It's like with Nate. When he was born, David and I named him Nathaniel, and figured we would call him by that name. But from the moment of his birth, he’s been such a thorough and complete Nate. We have a video of bringing him home from the hospital right after he was born. We carried him over the threshold and said, "Welcome home, Nathaniel." I don’t think we’ve called him Nathaniel since. I remember once when he was three, a friend’s mom called him “Nathaniel.” Nate said, "Don't call me Nathaniel. My name is Nate!" I was shocked that my three-year-old was so certain of his own identity. On rare occasions, some people call him Nathaniel, but he's mostly Nate to those of us who know him best.
I went to a fabulous career development seminar today. I wore a hat called the Tracy, which had a beige straw cloth square crown with a large down brim and muted green hand rolled roses. The seminar was jointly run by Cornell, Columbia, Sinai, Einstein, and NYU. Sometimes these seminars get a little whiney, but this one had the best speakers, and there were terrific people to meet.
A woman who is Director of Diversity at Columbia University spoke about diversity in the workplace, and was absolutely spectacular! She talked about how people (women and men) are looking for balance in their lives now, and it's no longer acceptable for many of them to work 24/7. I know this to be true. I also think we pay the consequences for our overwork. Relentless stress takes its toll on our psyches, bodies, spirits, and families.
We have to figure out a way to let people work but also let their work lives fit with the rest of their lives. Even if the goal is simply to get as much work as possible out of a person, it is better strategy to allow them to try to make the pieces fit. Life is a marathon, not a sprint. If you give all your steam on the first leg of the relay you'll have nothing left for the finale. I know that this is true, but how do we make it a reality when we are all such Type A personalities, want nothing short of perfection, and work in a cancer hospital where the stakes are high and mistakes can have lethal consequences?
Another amazing speaker at the conference was named Catherine J. Morrison, J.D. She gave two terrific sessions, a general lecture on negotiation and a seminar on conflict resolution. I especially liked her Frank Zappa quote: “Reality is an optional experience!” I’m going to follow up with her and see if she can give a session for our women faculty.
At the seminar, a female junior faculty member who took a grantwriting course sponsored by Women Faculty Affairs just found out that she was awarded her grant from the National Institutes of Health! Isn't that fantastic, wonderful news? This Women Faculty Affairs job is great—I get to play Point Guard. I feel like Teresa Weatherspoon of the New York Liberty in the WNBA: I get the ball to the Center, and she gets it into the net.
The seminar was held at Columbia University, which is gorgeous—a beautiful college campus right in the middle of New York City. After the seminar, I went to the college bookstore and bought a CD of classic Beatles tunes to put on my iPod. I’m still listening to a lot of music these days, especially when I'm in the hospital or getting chemo.
The only bad thing about today is that my vision is still blurry. It’s hard to see the traffic signs across the street. I never realized how scary it is to go out in the world unable to see.
Love
Laura
Chapter 10: Good News, Bad News
It’s OK to cry, but do so <20 minutes/day.
____________________
From: Laura
Sent: Thursday, April 19, 2007 9:28 PM
To: Jennifer
Subject: Good news/bad news
Hi Jen. I got good news and bad news today. The good news is that my visual blurring is probably due to prednisone. The bad news is that my cerebrospinal fluid (CSF) won't clear, meaning it still has atypical lymphocytes. If these lymphocytes are lymphoma, and they can’t get rid of them, I probably won’t survive.
Now I'm going to go cry (less than 20 minutes), and then I'll sit at the lap top and write and feel better. There’s more to tell but I’m exhausted. I’ll write later.
Love
Laura
____________________
From: Laura
Sent: Friday, April 20, 2007 1:28 AM
To: Jennifer
Subject: Highs and lows
Dearest Jen,
OK, I’m here to fill in the details about yesterday, which was the toughest day I’ve had yet. Emotional highs and lows. I'm exhausted thinking about it and it hurts to tell it, but it's going in the book, so I better go ahead.
It started with an appointment with the ophthalmologist. I told you I've been having blurry vision for about a week now, since I got the last dose of R-CHOP. My near vision is OK, but my distance vision is screwed up. When I went to the play on Sunday, Kevin Spacey was a fuzzy blur moving across the stage. Having blurry vision in the middle of Manhattan is scary. But the most terrifying thing about the blurry vision was thinking about what it could mean. The blurry vision may be from the prednisone, which changes the curvature of the lens of the eye (the lens gets swollen and puffy like everything else on steroids) or it could be from worsening lymphoma in the eyes.
I saw Jack, the ophthalmic oncology guy recommended by my neurologist. Jack is a man of few words, tall and thin, a little older than me, personable, and extremely knowledgeable. He tested both eyes, took measurements for a new prescription, and said that my blurry vision is because of the steroids. Decline in vision is apparently very common, particularly at the beginning of R-CHOP treatment, and usually stabilizes at a certain point. He saw no abnormal cells in my eyes, so it's NOT worsening ocular lymphoma. He wants me to come back on Monday so that he can recheck my vision, and if Monday’s prescription is stable from yesterday’s, he wants me to get new glasses.
I was thrilled about the good news. The ability to see (which lets me read and write) is essential for me. If I have to choose between seeing and hearing, I’d pick seeing, although I hope I won’t have to make that particular choice.
I had another intrathecal chemotherapy. I was starving and brought my lunch (a fresh salad that I made in the cafeteria) with me to eat while I was waiting for chemo. When Phil came in to tap the Omaya and I was eating a salad, he said, "You're eating before the chemo?" I told him that I was hungry, and that I also wanted him to see what I was having for lunch, because I knew he would not want to make me throw up and see it a second time. I told Phil that I had learned that if I throw up, it’s because he’s injecting too fast. I said that if that happens, I’m going to aim directly for his soft brown leather imported Italian shoes, and that when I take aim, I do not miss. Guess what? Phil injected slowly, and I didn't puke! Afterwards, I sat with Cindy and she held pressure on my head (which bled awhile) until I felt OK.
After we finished the intrathecal chemo, I had a serious discussion with Phil about the fact that my CSF (the cerebrospinal fluid surrounding the brain and spinal cord) has not cleared. Yesterday was my fifth dose of intrathecal methotrexate. Before each injection of intrathecal methotrexate, they take out some fluid (called “tapping the Omaya”) and send it to the lab so they can analyze the cells under the microscope. We had originally planned six doses of intrathecal chemo, and Phil had thought that the CSF would clear after the first dose or two. Unfortunately, my Omaya taps still show atypical lymphocytes. Phil’s sending the fluid from yesterday’s tap for fancy tests (including something called “flow cytometry”) to find out for sure whether these cells are lymphoma, but he suspects that they are. I should get those results on Monday.
If the flow cytometry is negative (meaning no lymphoma cells from the Omaya), then after my third cycle of chemo is done, they’re going to do a lumbar puncture (LP, or spinal tap). I asked Phil why we need the LP if he’s tapping the Omaya, and he said that the CSF around the brain (which is what you get in an Omaya tap) and the CSF around the spinal cord (which you get by doing an LP) mix with each other but sometimes the mixing is incomplete, and what you find in one might be different than what you find in the other. We’ll need to send the fluid from the LP for flow cytometry also, so that we can thoroughly analyze all of the CSF for the presence of lymphoma.
Phil is thinking about changing me to even stronger intrathecal chemo. I’m worried. The intrathecal methotrexate I’m on now is tough to take, and I'm concerned that if they hit me with more aggressive intrathecal chemo for worsening lymphoma, either the stronger chemo or the lymphoma or both will kill me. I’m trying to stay positive and I’m still hoping to blow this cancer thing out of the water, but I’m also terrified of dying.
After my appointment, Cindy took me home in a cab. On the way home, she said she was going to be in the city on Saturday, and asked if I wanted to meet at St. Patrick’s cathedral so we could light candles. It sounded like a comforting thing to do, so I said yes, and we made plans to meet there at 4 pm on Saturday.
When I got home, I was upset about two things. First, there is a chronic leak in our master bathroom, which has been overgrown with fungus for months. It could probably kill a healthy person, but with my low white blood cell count it is a death zone. Second, we have a beautiful terrace on which we planted flowers and trees a few years ago. For the past two summers, they’ve been doing construction on the terrace. They killed the plants, broke the glass window panes, moved away our table to make room for their equipment, and rendered the space unusable. Now that I’m sick, I want to sit out there when the weather is warm enough and bring my lap top and write.
David has spoken multiple times to the new super about these problems (the old super was a crook who took bribes and got fired). The new super keeps saying that he will take care of these things, but it hasn’t happened yet. So today I had enough. I intercommed the front desk and told them to send me the super, that I had to speak to him personally. Nate and Carmen were here. I told them to get ready for a scene.
Jesus, the new super, came. He is a quiet man in his 40’s, with a Spanish accent, medium build, and dark hair. I greeted him with no hat, bald. I told him that I have cancer, that I'm getting chemotherapy, and that there is a good chance that I’ll be dead within a year. I told him that I need him to get the terrace finished so that I can sit out there. I showed him every item on the terrace that needs to be fixed. Then I asked him to go into our disgusting fungemic bathroom and told him that the doctors said that this could kill me if it is not corrected immediately. I told him that if I died because of the fungus in the bathroom, he was responsible for my children losing their mother. I screamed, I cried, and I begged him in the name of God to help me.
By the time I was finished, poor Jesus was a shaking shell of a human being. This quiet God-fearing gentleman had a hysterical bald woman on his hands. I must have lit a fire under him. He made a bunch of calls; he promised he would take care of it; he gave me a hug and kissed my hand; and he said he goes to church every day and will pray for me. He gave me his cell phone number and told me I could call him any time of the day or night. And then he left, but he must have been upset, because he left his wallet in our apartment and had to come back to get it.
After the scene with Jesus, Emma came home. I had to have a heart to heart talk with Emma about a bunch of things. I've been showering in her bathroom in the mornings because I’ve been afraid to go in the death zone of our master bathroom. Sometimes the sound of my showering wakes her up. This morning I couldn't find the hat I wanted to wear, and I looked in her room, and I kept knocking on her door to come in, which interrupted her sleep. And she hadn't slept well the night before. I knew she was irritated, but my kids don’t want to be mad at me these days because I’m sick. I apologized for interrupting Emma’s privacy to look for the hat. I told her I won’t leave my hats in her room anymore. Together, we made a plan for when I can use her shower without disturbing her. I told her that it’s OK for her to be upset, and that I was glad we could talk about what’s been going on.
David came home. Jesus had called him, and David wanted to know what had happened. I explained the scene, after which David came up with all sorts of reasons why the plan of fixing the bathroom couldn't work. The Super had asked Carmen to clean out the bathroom, and Carmen started saying that she would do it in the morning. And then I lost it. David, Carmen, Emma, and I were in the family room, and Nate was in the living room at the table, working with his SAT II tutor. I started to scream.
I screamed that I needed them to do what I asked exactly the way I wanted. When Carmen asked me why I was getting so upset, I screamed "BECAUSE I'M SCARED I'M GOING TO DIE! IS THAT SO HARD TO UNDERSTAND?" I was told today that the CSF is not clearing, and I know that if the CSF doesn’t clear, I won’t live. I’m making the best effort I can to beat this thing, but ultimately whether I survive is beyond my control. Although there is a lot about which I can’t call the shots, I’d like to control the few things I can. I want to sit on the terrace. I want a bathroom that is free of fungus. I want the people I love to help make that happen, and not tell me a thousand reasons why they can't. I hadn't even realized that was what made me so upset, and once I did and told them, they understood.
Poor Nate. He overheard my scream about "I'M SCARED I'M GOING TO DIE" in the living room with his tutor. Apparently he looked up sweetly at her and said in a calm voice, "I think we're done." She initially thought the screaming was from the neighbors, but apparently I screamed again, and then she realized, “The call is coming from inside the house.” Nate is so funny when he tells the story.
I'm not scared of dying for me; I don't want to leave David and Nate and Emma. They deserve more.
Love
Laura
____________________
From: Laura
Sent: Thursday, April 19, 2007 9:28 PM
To: Jennifer
Subject: Good news/bad news
Hi Jen. I got good news and bad news today. The good news is that my visual blurring is probably due to prednisone. The bad news is that my cerebrospinal fluid (CSF) won't clear, meaning it still has atypical lymphocytes. If these lymphocytes are lymphoma, and they can’t get rid of them, I probably won’t survive.
Now I'm going to go cry (less than 20 minutes), and then I'll sit at the lap top and write and feel better. There’s more to tell but I’m exhausted. I’ll write later.
Love
Laura
____________________
From: Laura
Sent: Friday, April 20, 2007 1:28 AM
To: Jennifer
Subject: Highs and lows
Dearest Jen,
OK, I’m here to fill in the details about yesterday, which was the toughest day I’ve had yet. Emotional highs and lows. I'm exhausted thinking about it and it hurts to tell it, but it's going in the book, so I better go ahead.
It started with an appointment with the ophthalmologist. I told you I've been having blurry vision for about a week now, since I got the last dose of R-CHOP. My near vision is OK, but my distance vision is screwed up. When I went to the play on Sunday, Kevin Spacey was a fuzzy blur moving across the stage. Having blurry vision in the middle of Manhattan is scary. But the most terrifying thing about the blurry vision was thinking about what it could mean. The blurry vision may be from the prednisone, which changes the curvature of the lens of the eye (the lens gets swollen and puffy like everything else on steroids) or it could be from worsening lymphoma in the eyes.
I saw Jack, the ophthalmic oncology guy recommended by my neurologist. Jack is a man of few words, tall and thin, a little older than me, personable, and extremely knowledgeable. He tested both eyes, took measurements for a new prescription, and said that my blurry vision is because of the steroids. Decline in vision is apparently very common, particularly at the beginning of R-CHOP treatment, and usually stabilizes at a certain point. He saw no abnormal cells in my eyes, so it's NOT worsening ocular lymphoma. He wants me to come back on Monday so that he can recheck my vision, and if Monday’s prescription is stable from yesterday’s, he wants me to get new glasses.
I was thrilled about the good news. The ability to see (which lets me read and write) is essential for me. If I have to choose between seeing and hearing, I’d pick seeing, although I hope I won’t have to make that particular choice.
I had another intrathecal chemotherapy. I was starving and brought my lunch (a fresh salad that I made in the cafeteria) with me to eat while I was waiting for chemo. When Phil came in to tap the Omaya and I was eating a salad, he said, "You're eating before the chemo?" I told him that I was hungry, and that I also wanted him to see what I was having for lunch, because I knew he would not want to make me throw up and see it a second time. I told Phil that I had learned that if I throw up, it’s because he’s injecting too fast. I said that if that happens, I’m going to aim directly for his soft brown leather imported Italian shoes, and that when I take aim, I do not miss. Guess what? Phil injected slowly, and I didn't puke! Afterwards, I sat with Cindy and she held pressure on my head (which bled awhile) until I felt OK.
After we finished the intrathecal chemo, I had a serious discussion with Phil about the fact that my CSF (the cerebrospinal fluid surrounding the brain and spinal cord) has not cleared. Yesterday was my fifth dose of intrathecal methotrexate. Before each injection of intrathecal methotrexate, they take out some fluid (called “tapping the Omaya”) and send it to the lab so they can analyze the cells under the microscope. We had originally planned six doses of intrathecal chemo, and Phil had thought that the CSF would clear after the first dose or two. Unfortunately, my Omaya taps still show atypical lymphocytes. Phil’s sending the fluid from yesterday’s tap for fancy tests (including something called “flow cytometry”) to find out for sure whether these cells are lymphoma, but he suspects that they are. I should get those results on Monday.
If the flow cytometry is negative (meaning no lymphoma cells from the Omaya), then after my third cycle of chemo is done, they’re going to do a lumbar puncture (LP, or spinal tap). I asked Phil why we need the LP if he’s tapping the Omaya, and he said that the CSF around the brain (which is what you get in an Omaya tap) and the CSF around the spinal cord (which you get by doing an LP) mix with each other but sometimes the mixing is incomplete, and what you find in one might be different than what you find in the other. We’ll need to send the fluid from the LP for flow cytometry also, so that we can thoroughly analyze all of the CSF for the presence of lymphoma.
Phil is thinking about changing me to even stronger intrathecal chemo. I’m worried. The intrathecal methotrexate I’m on now is tough to take, and I'm concerned that if they hit me with more aggressive intrathecal chemo for worsening lymphoma, either the stronger chemo or the lymphoma or both will kill me. I’m trying to stay positive and I’m still hoping to blow this cancer thing out of the water, but I’m also terrified of dying.
After my appointment, Cindy took me home in a cab. On the way home, she said she was going to be in the city on Saturday, and asked if I wanted to meet at St. Patrick’s cathedral so we could light candles. It sounded like a comforting thing to do, so I said yes, and we made plans to meet there at 4 pm on Saturday.
When I got home, I was upset about two things. First, there is a chronic leak in our master bathroom, which has been overgrown with fungus for months. It could probably kill a healthy person, but with my low white blood cell count it is a death zone. Second, we have a beautiful terrace on which we planted flowers and trees a few years ago. For the past two summers, they’ve been doing construction on the terrace. They killed the plants, broke the glass window panes, moved away our table to make room for their equipment, and rendered the space unusable. Now that I’m sick, I want to sit out there when the weather is warm enough and bring my lap top and write.
David has spoken multiple times to the new super about these problems (the old super was a crook who took bribes and got fired). The new super keeps saying that he will take care of these things, but it hasn’t happened yet. So today I had enough. I intercommed the front desk and told them to send me the super, that I had to speak to him personally. Nate and Carmen were here. I told them to get ready for a scene.
Jesus, the new super, came. He is a quiet man in his 40’s, with a Spanish accent, medium build, and dark hair. I greeted him with no hat, bald. I told him that I have cancer, that I'm getting chemotherapy, and that there is a good chance that I’ll be dead within a year. I told him that I need him to get the terrace finished so that I can sit out there. I showed him every item on the terrace that needs to be fixed. Then I asked him to go into our disgusting fungemic bathroom and told him that the doctors said that this could kill me if it is not corrected immediately. I told him that if I died because of the fungus in the bathroom, he was responsible for my children losing their mother. I screamed, I cried, and I begged him in the name of God to help me.
By the time I was finished, poor Jesus was a shaking shell of a human being. This quiet God-fearing gentleman had a hysterical bald woman on his hands. I must have lit a fire under him. He made a bunch of calls; he promised he would take care of it; he gave me a hug and kissed my hand; and he said he goes to church every day and will pray for me. He gave me his cell phone number and told me I could call him any time of the day or night. And then he left, but he must have been upset, because he left his wallet in our apartment and had to come back to get it.
After the scene with Jesus, Emma came home. I had to have a heart to heart talk with Emma about a bunch of things. I've been showering in her bathroom in the mornings because I’ve been afraid to go in the death zone of our master bathroom. Sometimes the sound of my showering wakes her up. This morning I couldn't find the hat I wanted to wear, and I looked in her room, and I kept knocking on her door to come in, which interrupted her sleep. And she hadn't slept well the night before. I knew she was irritated, but my kids don’t want to be mad at me these days because I’m sick. I apologized for interrupting Emma’s privacy to look for the hat. I told her I won’t leave my hats in her room anymore. Together, we made a plan for when I can use her shower without disturbing her. I told her that it’s OK for her to be upset, and that I was glad we could talk about what’s been going on.
David came home. Jesus had called him, and David wanted to know what had happened. I explained the scene, after which David came up with all sorts of reasons why the plan of fixing the bathroom couldn't work. The Super had asked Carmen to clean out the bathroom, and Carmen started saying that she would do it in the morning. And then I lost it. David, Carmen, Emma, and I were in the family room, and Nate was in the living room at the table, working with his SAT II tutor. I started to scream.
I screamed that I needed them to do what I asked exactly the way I wanted. When Carmen asked me why I was getting so upset, I screamed "BECAUSE I'M SCARED I'M GOING TO DIE! IS THAT SO HARD TO UNDERSTAND?" I was told today that the CSF is not clearing, and I know that if the CSF doesn’t clear, I won’t live. I’m making the best effort I can to beat this thing, but ultimately whether I survive is beyond my control. Although there is a lot about which I can’t call the shots, I’d like to control the few things I can. I want to sit on the terrace. I want a bathroom that is free of fungus. I want the people I love to help make that happen, and not tell me a thousand reasons why they can't. I hadn't even realized that was what made me so upset, and once I did and told them, they understood.
Poor Nate. He overheard my scream about "I'M SCARED I'M GOING TO DIE" in the living room with his tutor. Apparently he looked up sweetly at her and said in a calm voice, "I think we're done." She initially thought the screaming was from the neighbors, but apparently I screamed again, and then she realized, “The call is coming from inside the house.” Nate is so funny when he tells the story.
I'm not scared of dying for me; I don't want to leave David and Nate and Emma. They deserve more.
Love
Laura
Chapter 11: Test Results
Ask people to pray for you. Get in shape. Go iPod.
____________________
From: Laura
Sent: Friday, Apr 20, 2007 2:17 AM
To: Phil
Subject: Treatment thoughts and questions
Hi Phil. Question: will I be getting intrathecal chemo when I see you at 9:45 am this Tuesday, prior to my admission that day? And do I come straight to you first for the appointment, and then go to the Admitting Office afterwards?
Don’t worry about the ridiculously early time on the email. My sleep schedule is odd, but I'm getting enough sleep. I usually take my evening pharmacy of medicines around 8-9, sleep about four or five hours, wake up and write for a couple of hours, and then go to sleep until somewhere between 4 and 6 am. So I get about 6 hours of sleep a night (I have never been a good sleeper). The prednisone may contribute but I have a similar pattern off steroids.
I keep thinking about our last visit. I had so wanted the CSF cytology to clear and I’m concerned that it may not be clearing. If you need to switch to a bigger intrathecal gun, I will do it. But I also wonder if there is still the possibility that these cells in my CSF and I can co-exist, because maybe what I have is a weird thing on the cusp between autoimmune and malignant. Maybe we could treat until the cows come home and I'd still have funky lymphocytes in the CSF, and maybe it would be OK. I don't want you guys to treat my numbers and kill me in the process. Please keep that in mind when you talk to Sam after the flow results are back. And please keep me in the loop.
I was so relieved when Jack said he thought the visual trouble was from the steroids and not worsening lymphoma. I am paring down the faculties I absolutely need to live a happy life, and unfortunately vision is among them.
Laura
____________________
From: Laura
Sent: Friday, April 20, 2007 4:36 AM
To: Gerald
Subject: Help
Hi Gerald. We don’t know each other well, since you just joined us at Memorial a few months ago, but I’m a long-standing fan of your cancer research. That’s why I’m asking you for help.
This winter, I was diagnosed with disseminated lymphoma and started treatment with R-CHOP, intrathecal methotrexate, and high dose IV methotrexate at Memorial. A recent Omaya tap showed persistent atypical cells in my CSF. Phil, my oncologist, sent flow cytometry yesterday, which is pending. He says that if the atypical cells are lymphoma, we have to switch to stronger (and potentially more toxic) chemo.
Can you look at my lymphoma cells and design a targeted drug that would destroy my lymphoma cells and not kill the rest of me? I know you’ve been successful using this approach before in non-lymphoma cancers. I love my family more than you can imagine, and I’d like to have the chance to grow older with my husband and watch our kids grow up. I know that this kind of research can take years, and I may not have that kind of time.
As cancer doctors, we’re trained to accept dying as a part of life. Now that I’m on the other side, I see how hard it is to stare death in the face and confront the possibility of leaving the people you love. I realize that my request is enormous (if not impossible), but if anyone can do it, it’s you.
Laura
____________________
From: Laura
Sent: Saturday, April 21, 2007 7:25 AM
To: Jennifer
Subject: Movie
Dearest Jen,
I can see that you really read my emails—you rattled off a list of the people who make up the cast of characters of my life as if you had been there living it with me (which you are, in spirit!). I’m also glad you don’t think my outburst traumatized my kids for life. That helps me a lot, coming from you.
You'll be delighted to hear that yesterday (Friday) was much better than Thursday! It started in the morning. The super was coming up to meet with David about the terrace and the bathroom. Nate thought that if I saw Jesus again I would explode, so he wanted to make sure that I wouldn’t have any contact with the super. He told me that when the super comes, I should either go into another room or leave the apartment. He refused to go to school until David promised him to make sure that I did one or the other. Emma had already left, so I went into Emma’s bathroom to take a shower, and stayed there with the door closed until David came in and told me that the super was gone.
Apparently it went well with the super. Jesus told David that they would finish the terrace within the week, and that the painters were coming in an hour to work on the bathroom. Jesus also told David that he has a prayer group, and he would like to bring his three friends over to pray for me. So I have to set a date to have the super's praying buddies make a house call!
I wanted to leave before the painters got there, because I knew it would make me upset. Luckily I had a good place to go. My friend Terri, an oncologist who makes documentaries about people living with cancer, had asked me to be in a film she was making called “The Physician as Patient,” and she was filming that day. I had to pick the right clothes for the movie. I ended up wearing a muted purple silk shirt, a patterned multicolored yellow and purple skirt that I bought in St. Johns once on a Caribbean vacation, and a sweater in a combination of gold and purple. The most important decision, of course, was the hat. I picked a hat called the Butterfly, which is a soft mauve crown with medium brim and a muted gold silk organza butterfly-shaped bow.
To kill the time between 9 am and the movie shoot at 11:30 am, I went to our new clinical offices at 61st St. I wrote you when I saw the bare suite, but I haven’t been back since everybody moved in. They moved offices when I was just starting treatment. I’ve had many prior office moves in the hospital and previously I’ve always packed and moved myself, meticulously labeling every box with books, journals, articles, and other items. This time, I didn't pack or move a single thing. I delegated it all to Lea, who did a spectacular job. She had even hung my pictures on the walls, so it really seemed like my office. And the windows that I was so excited about when I saw them for the first time—Jen, they actually open! And I look right at a huge sign that says Bed, Bath, and Beyond. The office is about twice the size of my previous radiology office, and the sun streams in through the windows.
Around 11:00 I left to go to the St. Regis Hotel, on 5th Avenue and 55th St. The hotel has an ornate lobby with lots of gold trim. I asked at the front desk where Terri was making the film. They told me the suite and I went up. When I entered the suite, they had just finished filming an 81-year-old doctor who had previously had head and neck cancer and now had prostate cancer. I chatted with him and his wife for awhile. Then the couple left and they set up for me.
The make-up part was a riot. I had blush, some kind of powder, and lipstick that I borrowed from Emma, but since I never wear make-up, I didn’t know how to put them on. Terri and I went in front of the mirror in the bathroom, a room that is bigger than my entire apartment, and she applied the makeup to my face. She is absolutely meticulous—things had to be exactly balanced on both sides—it was like having Monk as your make-up artist! Emma's lipstick was too orange for me, so I did a trick that the cameraman from India suggested. There was a bowl of raspberries in the room, so I rubbed some raspberries on my lips to make them red. Apparently that is how the queens in India do it, so I guess now I have the qualifications to apply for a job as an Indian Queen.
The filming was done in the living room of the hotel suite, with overstuffed chairs, huge picture windows, and cut lilies in the background. It was a little hot in the room so they put on the air conditioning. I sat in the chair and I was wired up so tightly with mikes that I probably couldn’t have escaped if I had wanted to. The film crew was two guys: Chris was in charge of the camera and Alex was in charge of sound. They were very friendly and joked around to try to put me at ease.
When it was time to start, Terri sat in the chair opposite me and asked questions. I got to tell a lot of my stories (although I left out the one about the panties and the brain surgery) and we talked about stuff I haven't really fully articulated in my mind (eg do you believe in life after death, do you believe in God, etc.). She asked questions about whether I got nervous waiting for test results, and I said not really. It’s interesting that I said that—in the moment I completely forgot how terrified I am waiting for the results of the Omaya tap to see if the CSF has cleared. I guess the mind compartmentalizes. I had to take a couple of nausea pills to get through the filming. Afterwards, we went to a little outdoor plaza nearby to take some still photos.
Later, I met my friend Karen for tea. She’s a breast imager from California and was in New York to visit her daughter. I've always admired her, because she does terrific work while still managing to keep her priorities straight. If she's invited to give a talk and she has family plans, she will do the family stuff and blow off the meeting. Her daughter is a sophomore at Columbia, studying Hispanic Studies and Human Rights. After tea, we walked back to my apartment and met up with her daughter. I took them for a walk on the boardwalk by the East River, and then I brought them home and introduced them to Emma and Nate. They left before dinnertime.
I was afraid to look in the bathroom until David got home, because I knew if I saw the fungus again I would lose it. When David came home, we looked at the bathroom together. Jen, it was a miracle. Those painters had scraped everything down to the bone, it was pure white, and the fungus was GONE. So it was worth it. One less thing trying to kill me.
That's all for now. Today I’m going to St. Patrick’s cathedral to light candles with Cindy.
Love
Laura
____________________
From: Laura
Sent: Saturday, April 21, 2007 9:56 PM
To: Jennifer
Subject: Lighting candles
Hi Jen. Cindy and I met this afternoon at St. Patrick’s cathedral, as planned. It was a gray day, lightly drizzling when I got there. I was wearing a black hat called the Lachlan, which has a square crown, medium brim bucket, and knot trim, in a soft waterproof fabric. The hat was perfect for the rain outside, but was hot in the church, so once we were inside, I took off the hat and put on my Monk cap, which I had stuffed into my purse.
I had never been inside St. Patrick’s before. It was like a European cathedral. Incredibly high ceilings, ornate gold everywhere, and stained glass windows in vibrant colors with light shining through. When you come in, there’s a marble water fountain on your left, which Cindy said has holy water. I asked whether you drink it, and she said no, you bless yourself with it. Apparently you are allowed to bring a bottle with you and take some holy water for the road. I dipped my fingertips in it and sprinkled some on my head and shoulders.
We walked around the church. In the center were multiple long wooden benches. At the periphery were statues of saints, each enclosed by a couple of marble steps and a small fence. A little plaque near each saint explained the name of the saint and what the saint stood for. To your lower left as you looked at the saint, there were bins that had many round, relatively flat, unlit candles. More centrally, there were several rows of small glass cups, some with lit candles inside. The round candles fit perfectly into the glass cups. There was another bin full of wooden sticks, thinner and longer than chopsticks.
If you want to light a candle to a saint, you pick up an unlit candle, gently pull up the wick so that it’s standing rather than flat against the wax, and drop the candle into an empty glass cup. You take one of the wooden sticks, put the tip in the flame of one candle, and use that to light your candle. After the candle is lit, you can blow out the flame on your stick or extinguish it by putting it directly into this thin rectangular planter full of dirt. We enjoyed putting it into the dirt, because it made a satisfying little hissing sound as the fire went out.
Cindy recognized the saints, although I didn’t know most of them. I read all the cards. I was looking for a saint for 47-year-old women with lymphoma. None of the saints exactly fit the bill, but I was able to find saints for the sick, the dying, the departed, and people in need. I figured close enough, and lit the candles. After we had walked halfway around the church, there was a quiet area with several benches separate from the main central portion of the Cathedral. From the benches, there was a beautiful view of the stained glass windows and an altar at the front. We sat there quietly for awhile. Then we got up, looped around the other side of the church lighting candles for a few more saints, and left the cathedral.
Although it was near dusk, the light outside glared after the dim of the church. It was also jarring to come out of the cathedral and immediately be inundated by the bustle and commercialism of New York City, including an Armani Emporium right across the street. Cindy and I didn’t talk much. It had stopped drizzling by then. We walked back to the Upper East Side, where Cindy had parked her car. We gave each other a hug. She got into her car and I hopped a cab back to my apartment.
I know that lighting candles in a cathedral is an odd experience for a nice Jewish girl. I’m not a born again Christian (or any kind of Christian). When I was growing up, my parents shared a strong sense of Jewish cultural identity but weren’t religious—my dad used to say that many atrocities in world history were committed in the name of God. But confronting the fact that I might die makes me look for answers and spiritual solace wherever I can find them. I need to connect with other people, with the universe, and with what, if anything, is beyond it.
Tomorrow, back to earth. Emma and I have tickets to see a Broadway show.
Love
Laura
____________________
From: Laura
Sent: Sunday, April 22, 2007 6:18 AM
To: Q
Subject: Invitation
Dearest Q,
I’m writing this letter to invite you, Steve, Nick, and Ben to our "re-wedding." David and I are going to celebrate our 25th anniversary by getting unofficially married again. We're hoping to have the celebration on Sunday June 10 (the actual anniversary is June 13), either on our terrace if it's ready or in Carl Schurz Park if it's not. It will be very simple—just the eight of us (no rabbi or other officiating person) and we'll read something out loud and give each other a hug and a kiss and that's it. Afterwards we'll have dinner. Can you join us?
Love
Laura
____________________
From: Laura
Sent: Sunday, April 22, 2007 11:25 PM
To: Jennifer
Subject: Spring Awakening
Hi Jen. I had a wonderful day with Emma today. It was sunny and warm outside, maybe the first real spring day we've had so far. I wore a hat called the Olivia, which was a fabric cloche with piped crown and hand-rolled roses in a luscious lime green.
Emma came with me to drop off some dry cleaning, and then we went shopping. We went to Eileen Fisher, and bought some comfortable pants with an elastic waist in beige and black. I also got a button-down sweater that doesn't pull over my head. All my clothes have to be easy now. No energy to spend on snaps and zippers and buckles. We also got a great jacket for Emma from the Petites section. Then we went next door to Le Sportsac, and Emma helped me choose a pouch I can use to organize all the stuff I carry with me now (Meds, iPod, anti-nausea pills, pencils, toothbrush, toothpaste, numbing spray, and anesthetic cream).
After a quick lunch, Emma and I went to see "Spring Awakening," a Broadway musical about a young girl's coming of age. We’ve been listening to the CD, but hadn’t seen the show yet. Emma and I have been seeing musicals together for years. I love our excursions. I’ve always been a big fan of musicals, and the boys never want to go; David and Nate both believe that people should not spontaneously burst into song. It’s great to spend time with Emma—she’s such a bundle of joy and energy. Any experience is more fun if Emma is there to share it.
I remember our first mother-daughter outing to the theater more than a decade ago. Emma was three, and I had gotten tickets for us to see the ballet at Lincoln Center. All around us were mother-daughter couples, including one couple next to us with a mom in her 50s and a daughter in her 30s who have apparently been coming to Lincoln Center together for more than twenty years. Emma was very excited at the beginning of the show but when I turned to talk to her as the curtain rose at Intermission, I saw she was fast asleep. The most expensive nap in history.
We loved Spring Awakening. There were young actors we’d never seen before and the music had a strange combination of dissonance and consonance as well as a mix of styles including classic show-tune, gospel, and rock. Afterwards, I got Emma a Spring Awakening t shirt and the script of the play from which the musical was adapted (although the story was primarily an excuse for the music). We took a cab home and the four of us had dinner together. Nate and David went out to a jazz club. Emma and I listened to the music from the show and fell asleep before the CD ended.
Love
Laura
____________________
From: Laura
Sent: Monday, April 23, 2007 11:59 AM
To: Peter
Subject: Flow cytometry
Hi Peter. I had a repeat Omaya tap to see if there are still lymphoma cells in my CSF. As we discussed, I’d be very grateful if you could give me a buzz to discuss the results of the flow cytometry. I gather this is the critical test. I’m at x5728.
Thanks!
Laura
____________________
From: Laura
To: Phil
Sent: Mon Apr 23 12:07 AM
Subject: Go with the flow
I talked to Peter about the CSF flow results and he said it's negative for lambda or kappa clonal excess. Apparently that means there’s no lymphoma in the CSF! That’s one for the home team. After Cycle 3, we have to confirm that the cells are clear in the LP. I’ll set it up.
Laura
____________________
From: Laura
Sent: Monday, April 23, 2007 9:45 PM
To: Jennifer
Subject: Good news
Hi Jen. Thanks for your note. I know how hard it is to find a new nanny. I wish I could launch a Philadelphia spin-off of our Nanny Resource list-serve for you now and find you the perfect nanny. I’ll ask Carmen if she knows of any nannies in Philly.
I got some good news today—the flow cytometry on my CSF showed no clonal excess! In English, that means that the funky lymphocytes in my CSF are probably NOT lymphoma. I need to confirm that finding with another lumbar puncture (LP, or spinal tap), to make absolutely sure that the CSF is clear, but this raises my chances considerably. This result is just what I was hoping for, and I’m glad about it, but I can’t completely rejoice until we confirm the results with an LP, which will happen after I finish this round of chemo.
Yes, I'm being admitted tomorrow for more high-dose IV methotrexate. I'll probably go home Sunday. I hope I get admitted back to M8. They were so nice to me the last time.
Have to pack for my admission. My next emails will be from the hospital.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 24, 2007 9:49 PM
To: Maureen
Subject: Thank you
Hi Maureen. Thank you for leading Athena tonight! I already hear through the grapevine that you did a fantastic job. Can't wait to hear the details.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 25, 2007 1:21 AM
To: Gerald
Subject: Never mind
Hi Gerald. I’m writing to apologize for the desperate middle-of-the-night email I sent you a couple of days ago. I’m glad I got your autoreply that you’re out of town with limited email access. When I sent the email, it looked like my lymphoma wasn’t responding to the chemo and I got scared. Luckily, the news this week was great. My CSF is clear—no lymphoma! So we’re both off the hook for now. Hopefully, when you get back, you’ll read both of these emails at the same time and know not to worry.
In this place where we spend most of our lives fighting cancer, it’s good to have you on our team. I won’t be shy to write if I need you again.
Best wishes
Laura
____________________
From: Laura
Sent: Wednesday, April 25, 2007 2:54 AM
To: Jennifer
Subject: Second admission
Hi Jen. I'm sorry you're short of breath. You're so petite, the baby occupies a substantial portion of you, and when your diaphragm tries to descend to allow the lungs to expand, your belly is telling your diaphragm "stay away from me!" Don't worry, this too will pass, and soon you will have your beautiful baby boy. I can't wait to meet him!
Yesterday I was re-admitted for more IV methotrexate. Wearing my Monk cap, I went up to the 4th floor to see Phil in the Clinic. Cindy met me there—I wasn't sure if they were going to give me another intrathecal chemo today or not. After I had my fingerstick, they called us into the office. Phil told me that since my flow cytometry was negative, I don’t need to get more intrathecal chemo for the time being. HOORAY! He said that after the third round of IV chemo I’ll get an LP as well as repeat MRIs of the spine and brain, and then we’ll discuss with Sam whether I need more intrathecal chemo at all.
I went to the Admitting office, and finally I was admitted back to M8. It's a different room, but still fine. The computer has this weird soft rubber keyboard which takes a little getting used to, but the layout is normal (QWERTYUIOP etc.). I already had multiple visitors, including one who brought me flowers which I’m allowed to have today because my white blood cell count is still OK. When your white cell count falls after chemo, they don’t allow you to have flowers because they could be a source of infection.
The nurse “accessed the port” after I sprayed it, and hooked me up to the pump on the IV. The IV pump follows me everywhere, beeping whenever it’s unplugged. They started the bicarbonate drip and gave me the premeds. The methotrexate started at 7:30 pm and ran for four hours, so it was done at 11:30 pm. Now I'm getting more bicarb. I get hydrated all day tomorrow, and then I get the leukovorin rescue starting 24 hours after the methotrexate began. So far so good.
Terri is busy editing her movie on “The Physician as Patient.” She'll present it at the annual meeting of the American Society of Clinical Oncology (ASCO) in June.
I'm getting sleepy. While I go to sleep, I’m going to listen to Yo Yo Ma and Emanuel Ax doing the Brahms E Minor Sonata for Cello and Piano that you and I used to play together (Allegro non troppo, Allegretto Quasi Menuetto—Trio, and Allegro). Usually I’m asleep before the end of the first movement.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 25, 2007 3:32 PM
To: Women Faculty
Subject: Athena lives
To Our Guests at Athena last night:
I'm writing to thank you for coming to Athena last night. It means so much to me that Athena lives even when I can't be there—it means that our group is self-sustaining. I especially want to thank Maureen for hosting the meeting while I was getting chemo. And I actually did join in the toast you had for me—I just did it with methotrexate instead of white wine. I’ve now received 9 of 18 chemos (halfway)!
I'll beat this. You can't keep a good woman down.
Laura
____________________
From: Laura
Sent: Wednesday, May 2, 2007 6:29 AM
To: Jennifer
Subject: Tales from inside the house
Hi Jen. Sorry for my long silence. I had to focus on getting through my admission. But things are good, and I have many stories to tell you to catch up!
First, about the admission. I wrote to you that the high-dose methotrexate went fine, and the rest was also pretty uneventful, fluids and peeing. They put a plastic container euphemistically called a "hat" in the toilet that collects all the urine so that it can be measured, and they track my Intake and Output (Is and Os). The system is imperfect—they carefully monitor every cubic centimeter (cc) of fluid that I get IV, but then they ask me how much I drank, and I have no idea, so I just make up a number. No matter when they ask how much I’ve had to drink, I look at them confidently and say, “200 cc.”
They take my vital signs (pulse, temperature, blood pressure) every six hours. I had a running joke with the nurses' aides about the impressiveness of my vital signs. When the team came by to round in the morning I told them that I had the best vital signs on the floor. Some of the nurses' aides thought it was hysterical, and others seemed puzzled by me. Maybe some of the M8 patients getting bone marrow transplant who are in the hospital for weeks at a time get a little depressed and don’t talk much to the aides.
Apparently the fellow-in-training on my team heard me brag that I had the best vital signs on the floor, and when she presented me at Lymphoma rounds to the other doctors at a meeting behind closed doors she described me (in good humor) as a competitive overachiever. A friend of mine who is a lymphoma doc and attends lymphoma rounds told me what the fellow said. So the next day, when the fellow came to see me at rounds, I told her, "I hear that in rounds you called me a competitive overachiever... I just hope you realize that if I am a competitive overachiever, that I am the best competitive overachiever on the floor!" We laughed.
I had terrific nurses. My day nurse was usually Trish, and my night nurse was a wonderful person named (of all things) Jen! It’s amazing how much the nurses affect your hospital experience. The doctors breeze in, glance at your chart, ask a couple of questions, listen to your heart and lungs for two minutes, and then disappear into doctorland to write notes and orders. When you need a Tylenol at 3 am or something hurts, it’s the nurses who come. The tooth fairy must be a nursing school professor—I’m amazed at how softly some nurses can tiptoe into your room in the wee hours of the morning and do what needs to be done without waking you up.
Guess what—Nate grew up! I never knew that I would be able to identify the precise date when he grew up, but it was Thursday, April 26, 2007. It was around 7:30 in the morning, and David had dropped by to have breakfast with me in the hospital. He started coming to have breakfast with me most mornings when I was in the hospital, after he got the kids off to school. It was our time together. That morning, while David was visiting, I called Nate to tell him I was worried because he didn’t seem to be doing much homework. Over the phone, I told him that I was concerned that he would jeopardize what he has spent three years in high school trying to achieve.
Nate calmly explained that he had already spoken to all of his teachers. He had discussed every single subject, reviewing what assignments he has, which ones he has to do, which ones he can skip, which papers he can hand in late, etc. Nate said he wanted to be in control of his schoolwork, which showed a great deal of insight and self-awareness; he can’t control my cancer, but he can control his work. He said that he hadn't told me because he didn't want to burden me, but that he’s taking care of his work and he asked that I respect that. This was no teenager; he was mature and rational. I hung up the phone, turned to David, and said, "He's an adult."
I had a lot of visitors. It's nice to see people, but sometimes it got a little out of control. It's hardest when four people who don't know each other come at once. For my next admission, I'm going to get a guest book and have people sign in and make comments at the door.
I narrowly dodged a blood transfusion. I was anemic to begin with (my hemoglobin was 8 point something; normal is 12), and then when they hydrated the hell out of me, my hemoglobin went down to 7.5 (basically they diluted my hemoglobin, a process called “hemodilution”). I had agreed to be transfused if it went below 7 but really didn't want a transfusion if it wasn't essential. So I claimed I had just become a Jehova's witness ("Jehova was just here! I witnessed Him!”) and talked them into giving me darbopoietin, an injection that helps your bone marrow produce more red blood cells. Thank God I avoided the transfusion. The more they do to you, the greater the chances that something will go wrong—or, as we used to say in internship, the more you stay, the more you stay. My hemoglobin started to come up, so it worked out OK.
During this admission, I continued doing laps around the nurses’ station while listening to my iPod and pushing my IV pole. At first I counted the number of laps, but then I started just doing an hour every morning, before I shower. Just turn on Stevie Wonder (At the Close of a Century, Disc 2) and I'm ready to rock and roll. I listen to a lot of classical music in the room (this time I especially enjoyed Mozart Violin Sonatas with Hilary Hahn and Natalie Zhu), but when I’m walking I go for more popular stuff.
I was discharged before noon on Saturday. David came to pick me up with his mom, who was visiting from California. We had brunch with the kids at home, toasted bagels and unsalted nova and cream cheese and fresh orange juice, one of my favorite New York traditions. After she left, I went to pick up new prescription glasses and I can see! It’s miraculous.
Re the plan for chemo etc.—I'm getting IV R-CHOP again tomorrow. After my next admission, I’ll be done with the third cycle of chemo and they’ll do restaging tests.
Love
Laura
____________________
From: Laura
Sent: Saturday, May 5, 2007 2:56 AM
To: Jennifer
Subject: Seeing the light
Dearest Jen,
I’ve reached a new phase in this cancer thing. I've already finished 10/18 planned doses of chemo, so I’m past the halfway mark. I can see the light at the end of the tunnel.
I enjoyed my laps around the nurses’ station during my last admission so much that I decided to try walking on the beautiful boardwalk overlooking the East River by my house, called John Finley walk, in Carl Schurz Park. I enter the Park at 88th Street, right next to Gracie Mansion, which is the Mayor’s mansion (although Bloomberg doesn’t live there, because apparently his own apartment is even nicer!). When you walk on the boardwalk, you can see a majestic view of the river, boats, Roosevelt Island, the Triborough Bridge, light, and sky. A moderately paced walk from one side of the boardwalk to the other takes ten minutes, so you can do three complete laps back and forth in one hour. If you’re very ambitious, you can go down the staircase on one side of the boardwalk and walk further downtown as far as the East 60s, and then come back.
For the past several days, I’ve been doing this walk for an hour each morning, wearing my iPod, listening to different music every day (The Supremes, the soundtrack of Wicked, Carole King, James Taylor). It's fun! There’s a whole culture out there in the mornings, with runners, walkers, newspaper-readers, bike-riders, stroller-pushers, etc. I particularly love seeing the people play with their dogs in a special fenced off-area. The dogs hang out on one side and the people on the other, like it's a big cocktail party. The other day a man sat on a bench reading the paper, and next to him was his large long-legged dog. The dog’s front legs were on the pavement, but his butt and hind legs were up on the bench—he sat on the bench like a person! I wish I’d had my digital camera.
Today I went to my 61st Street office. I read through snail mail, which included more cancer presents, and emails. For the book I’m writing, I'm trying to decide whether to include just the emails I send, which are mostly to you, or whether I should also include emails I get from other people. I've gotten some wonderful and supportive emails, and it may be nice to include them, because one take-home message I'd like to give people is that if you reach out to people, sometimes they are there for you in wonderful ways. If I do include other people's emails, I’ll let the authors of those emails read the book and ask their permission to let me use the emails as written.
Tonight David and I had a date. We went to see Cassandra Wilson at the Blue Note. She is a wonderful jazz singer who doesn't do a lot of club dates in the States anymore. I wore a new black sleeveless dress, a turquoise sweater, pearls, and a hat called the Lucy, which is a black weave with a soft silk silver bow. The music and dinner were fabulous but we were crushed in like sardines. It was the first time David and I went out to hear jazz together since his birthday party. I looked at David during the music and pictured him at jazz clubs over the years, starting when he was a kid in the Bronx and too young to get into the clubs so he would listen by the door.
I figured out how this lymphoma will behave. I’m going to go into remission with the chemotherapy, and will transform this acute threat on my life into a nice chronic disease for which I'll have to take pills and have follow-up tests. Every few years I will recur, because that's what lymphomas do. When I recur, they’ll blast me with chemo, which I’ll tolerate remarkably well, and I’ll go into another remission. As time goes by, they’ll do more research; the chemo will get better and the remissions will be longer. And I could percolate around like this for twenty years, or maybe longer, until one day the recurrence will get me or I’ll be hit by a bus or something entirely different. And maybe I'll outlive everybody else, and be looking for someone to whom I can send emails at 2 am. Good plan?
How are you today? Do you feel like the baby will come any minute now? When is the actual due date again?
Love
Laura
____________________
From: Laura
Sent: Saturday, May 5, 2007 1:27 PM
To: Mike
Subject: Your hat
Hi Mike. I guess Mel told you about my lymphoma. How wonderful that you sent me two hats! I bought 15 hats at the beginning of chemo, and since then people have been sending me hats as presents (usually baseball caps). Until today, I had 28 hats; your hats are #29 and #30. At this rate, I'll be able to get through the rest of my chemo and never wear any hat more than three times!
I’m impressed that you wore one of the hats during a New Year’s Day Alcatraz swim, and the other when you finished the Ironman World Championship Triatholon in Hawaii. I love the card, “Wear these be victorious.”
Keep those prayers coming. If God hears from a rogue like you, he'll know something is up that he has to take seriously. Since you’re Greek, maybe you should pray to a Greek God. Let's get Zeus on board.
I'm doing great. I’m more than half done with the chemo, and I started walking about an hour every day on this gorgeous boardwalk by the East River, right next to my house. One of these days (after my white cells come back), I mayl jump in the water and become a Polar Bear like you
I'm writing a book about being a doctor and a patient, and it's more than half done. I was going to call it Both Sides Now like the Judy Collins song. Unfortunately, there are already about a million books with that title. These books include, but are not limited to, Both Sides Now: A Twenty-Five Year Encounter with Arabs and Israelis, “Both Sides Now: The Story of School Desegregation’s Graduates, Both Sides Now: Living and Dying in San Francisco, and, my personal favorite, Both Sides Now: One Man’s Journey through Womanhood. I had to come up with another name. I’ve decided to call it I Signed as the Doctor because when they gave me the consent forms to sign for those god-awful procedures when treatment began, I kept forgetting I’m the patient, so I signed as the doctor!
We're already fantasizing about the post-chemo celebration vacation to Turks and Caicos in September. Blue sea, white sand, not a care in the world, and I hear I can bump into Donna Karan by the pool. But I'll be in the ocean snorkeling with fish in the reef.
Love to Sheila. Keep the faith.
Love
Laura
____________________
From: Laura
Sent: Saturday, May 5, 2007 3:13 PM
To: Jung-min
Subject: Hi! And a few things
Jung-min—are you at the American Roentgen Ray Society meeting today? I left you a message on your cell—I called for a few reasons:
1. Good luck! Your presentation will be fabulous.
2. Can you pick up an abstract book for me? If they give you a hard time, tell them it is for a colleague of yours with cancer who couldn't come to the meeting. And ask for it early in the week—by later in the week, they tend to disappear.
3. Who is the moderator of the scientific session at which you’ll be presenting? Before the presentation starts, go up to the moderator, introduce yourself, and check out the podium. Make sure you know how to advance the slides or go back, how the pointer works, and where the timer is so you can pace yourself.
4. I’ve gotten multiple phone calls about you for recommendations for the various programs for which you’re applying, and I tell them you are fabulous. But promise me you won't accept any offers until we talk. I want to give you my best advice when you have all the offers on the table.
You can call me back on my cell, email me, or call me at home. Which day is your talk, and when are you coming back? Are you staying at the meeting hotel? Are the accommodations OK? Do you know anyone at the meeting?
It is a beautiful day in New York today. I hope your trip was gentle and that you are having a wonderful time. Enjoy!
Love
Laura
____________________
From: Laura
Sent: Tuesday, May 8, 2007 4:10 AM
To: Jennifer
Subject: Baby?
Dearest Jen,
How are YOU? What is the status of Baby Boy Menell? When I didn't hear from you I thought you had the baby—what's going on?
Can you email me your cell phone, home phone, and work phone numbers again? In my prednisone craze I can't find them. Otherwise, I’m doing great and will resume writing to you more regularly soon.
David and I saw the play "Inherit the Wind" on Broadway, and it was fantastic. It’s funny how a play about evolution vs. creationism can be so relevant to current times. I’d been excited to see Brian Dennehy, but I was really blown away by Christopher Plummer. They were both amazing.
I miss you and love you very much, and wish you every joy in your new son, whenever he decides to make his debut.
Love
Laura
____________________
From: Laura
Sent: Saturday, May 19, 2007 10:44 AM
To: Jennifer
Subject: Third admission
Dearest Jen,
It's been awhile since I wrote you a good long letter, so here it comes. I'm an inpatient now, finishing up Cycle 3 of chemo with the high-dose IV methotrexate and leucovorin rescue. The chemo went fine on Thursday—no problems. I got admitted a little earlier than usual, so they were able to start the chemo earlier, which made the schedule flow a little more smoothly.
I've been feeling good, in spite of my ongoing worry about the LP I’ll have when this cycle of chemo is over. I’m walking laps around the nurses’ station again with the iPod, but I miss the boardwalk. I had so many visitors during my last admission that this time I brought a guest book—you know, like they have at a country inn or someone’s wedding? The guest book had a soft green cover and cream-colored paper, and I had bought it at Kate’s Paperie. I invite my guests to sign in and make comments. I considered having a cover charge and a two-drink minimum, but apparently that violates hospital regulations.
Today I had tickets for Emma and me to see A Chorus Line that I had bought months ago, but since I’m still in the hospital, Emma invited a friend to go with her. It will be her first Broadway show without me. I hope they have fun.
So when is this baby going to appear? Keep me posted!
Love
Laura
____________________
From: Liberman, Laura/Radiology
Sent: Wednesday, May 23, 2007 1:27 PM
To: Jennifer
Subject: LP results
Hi Jen. I had my LP (lumbar puncture, or spinal tap) yesterday. The procedure is done by a neuroradiologist under fluoroscopy (“fluoro”), x-ray equipment that provides moment by moment images of your bones and other structures. You lie face down on a table, and then the table tilts so that your head is up and your feet are down, at a bit of an angle. The neuroradiologist uses the fluoro to help figure out exactly where to put the needle, which is usually between the third and fourth of the five lumbar vertebrae (the back bones in the lower spine). My wonderful friend Hilda did the LP, and Sam came in person to hand-deliver the fluid to the lab.
Today, they already have my LP results. There were only two white blood cells, down from 76, with no clonal excess. In English, that means no evidence of lymphoma! With the negative LP and the negative Omaya tap, we can say that the CSF is clear. I wish I could play the music from “I Will Survive,” but that will make me feel like dancing, and I’m supposed to lie flat for several hours after the LP (I actually shouldn’t even be sitting at the computer to write you this note, but I can’t resist). I bought the DVD of “Dream Girls,” which I never saw before, and Carmen and I are going to watch it together.
The baby is due any day now, right? You must be so excited. You’ll finally get to meet your son!
Love
Laura
____________________
From: Laura
Sent: Friday, Apr 20, 2007 2:17 AM
To: Phil
Subject: Treatment thoughts and questions
Hi Phil. Question: will I be getting intrathecal chemo when I see you at 9:45 am this Tuesday, prior to my admission that day? And do I come straight to you first for the appointment, and then go to the Admitting Office afterwards?
Don’t worry about the ridiculously early time on the email. My sleep schedule is odd, but I'm getting enough sleep. I usually take my evening pharmacy of medicines around 8-9, sleep about four or five hours, wake up and write for a couple of hours, and then go to sleep until somewhere between 4 and 6 am. So I get about 6 hours of sleep a night (I have never been a good sleeper). The prednisone may contribute but I have a similar pattern off steroids.
I keep thinking about our last visit. I had so wanted the CSF cytology to clear and I’m concerned that it may not be clearing. If you need to switch to a bigger intrathecal gun, I will do it. But I also wonder if there is still the possibility that these cells in my CSF and I can co-exist, because maybe what I have is a weird thing on the cusp between autoimmune and malignant. Maybe we could treat until the cows come home and I'd still have funky lymphocytes in the CSF, and maybe it would be OK. I don't want you guys to treat my numbers and kill me in the process. Please keep that in mind when you talk to Sam after the flow results are back. And please keep me in the loop.
I was so relieved when Jack said he thought the visual trouble was from the steroids and not worsening lymphoma. I am paring down the faculties I absolutely need to live a happy life, and unfortunately vision is among them.
Laura
____________________
From: Laura
Sent: Friday, April 20, 2007 4:36 AM
To: Gerald
Subject: Help
Hi Gerald. We don’t know each other well, since you just joined us at Memorial a few months ago, but I’m a long-standing fan of your cancer research. That’s why I’m asking you for help.
This winter, I was diagnosed with disseminated lymphoma and started treatment with R-CHOP, intrathecal methotrexate, and high dose IV methotrexate at Memorial. A recent Omaya tap showed persistent atypical cells in my CSF. Phil, my oncologist, sent flow cytometry yesterday, which is pending. He says that if the atypical cells are lymphoma, we have to switch to stronger (and potentially more toxic) chemo.
Can you look at my lymphoma cells and design a targeted drug that would destroy my lymphoma cells and not kill the rest of me? I know you’ve been successful using this approach before in non-lymphoma cancers. I love my family more than you can imagine, and I’d like to have the chance to grow older with my husband and watch our kids grow up. I know that this kind of research can take years, and I may not have that kind of time.
As cancer doctors, we’re trained to accept dying as a part of life. Now that I’m on the other side, I see how hard it is to stare death in the face and confront the possibility of leaving the people you love. I realize that my request is enormous (if not impossible), but if anyone can do it, it’s you.
Laura
____________________
From: Laura
Sent: Saturday, April 21, 2007 7:25 AM
To: Jennifer
Subject: Movie
Dearest Jen,
I can see that you really read my emails—you rattled off a list of the people who make up the cast of characters of my life as if you had been there living it with me (which you are, in spirit!). I’m also glad you don’t think my outburst traumatized my kids for life. That helps me a lot, coming from you.
You'll be delighted to hear that yesterday (Friday) was much better than Thursday! It started in the morning. The super was coming up to meet with David about the terrace and the bathroom. Nate thought that if I saw Jesus again I would explode, so he wanted to make sure that I wouldn’t have any contact with the super. He told me that when the super comes, I should either go into another room or leave the apartment. He refused to go to school until David promised him to make sure that I did one or the other. Emma had already left, so I went into Emma’s bathroom to take a shower, and stayed there with the door closed until David came in and told me that the super was gone.
Apparently it went well with the super. Jesus told David that they would finish the terrace within the week, and that the painters were coming in an hour to work on the bathroom. Jesus also told David that he has a prayer group, and he would like to bring his three friends over to pray for me. So I have to set a date to have the super's praying buddies make a house call!
I wanted to leave before the painters got there, because I knew it would make me upset. Luckily I had a good place to go. My friend Terri, an oncologist who makes documentaries about people living with cancer, had asked me to be in a film she was making called “The Physician as Patient,” and she was filming that day. I had to pick the right clothes for the movie. I ended up wearing a muted purple silk shirt, a patterned multicolored yellow and purple skirt that I bought in St. Johns once on a Caribbean vacation, and a sweater in a combination of gold and purple. The most important decision, of course, was the hat. I picked a hat called the Butterfly, which is a soft mauve crown with medium brim and a muted gold silk organza butterfly-shaped bow.
To kill the time between 9 am and the movie shoot at 11:30 am, I went to our new clinical offices at 61st St. I wrote you when I saw the bare suite, but I haven’t been back since everybody moved in. They moved offices when I was just starting treatment. I’ve had many prior office moves in the hospital and previously I’ve always packed and moved myself, meticulously labeling every box with books, journals, articles, and other items. This time, I didn't pack or move a single thing. I delegated it all to Lea, who did a spectacular job. She had even hung my pictures on the walls, so it really seemed like my office. And the windows that I was so excited about when I saw them for the first time—Jen, they actually open! And I look right at a huge sign that says Bed, Bath, and Beyond. The office is about twice the size of my previous radiology office, and the sun streams in through the windows.
Around 11:00 I left to go to the St. Regis Hotel, on 5th Avenue and 55th St. The hotel has an ornate lobby with lots of gold trim. I asked at the front desk where Terri was making the film. They told me the suite and I went up. When I entered the suite, they had just finished filming an 81-year-old doctor who had previously had head and neck cancer and now had prostate cancer. I chatted with him and his wife for awhile. Then the couple left and they set up for me.
The make-up part was a riot. I had blush, some kind of powder, and lipstick that I borrowed from Emma, but since I never wear make-up, I didn’t know how to put them on. Terri and I went in front of the mirror in the bathroom, a room that is bigger than my entire apartment, and she applied the makeup to my face. She is absolutely meticulous—things had to be exactly balanced on both sides—it was like having Monk as your make-up artist! Emma's lipstick was too orange for me, so I did a trick that the cameraman from India suggested. There was a bowl of raspberries in the room, so I rubbed some raspberries on my lips to make them red. Apparently that is how the queens in India do it, so I guess now I have the qualifications to apply for a job as an Indian Queen.
The filming was done in the living room of the hotel suite, with overstuffed chairs, huge picture windows, and cut lilies in the background. It was a little hot in the room so they put on the air conditioning. I sat in the chair and I was wired up so tightly with mikes that I probably couldn’t have escaped if I had wanted to. The film crew was two guys: Chris was in charge of the camera and Alex was in charge of sound. They were very friendly and joked around to try to put me at ease.
When it was time to start, Terri sat in the chair opposite me and asked questions. I got to tell a lot of my stories (although I left out the one about the panties and the brain surgery) and we talked about stuff I haven't really fully articulated in my mind (eg do you believe in life after death, do you believe in God, etc.). She asked questions about whether I got nervous waiting for test results, and I said not really. It’s interesting that I said that—in the moment I completely forgot how terrified I am waiting for the results of the Omaya tap to see if the CSF has cleared. I guess the mind compartmentalizes. I had to take a couple of nausea pills to get through the filming. Afterwards, we went to a little outdoor plaza nearby to take some still photos.
Later, I met my friend Karen for tea. She’s a breast imager from California and was in New York to visit her daughter. I've always admired her, because she does terrific work while still managing to keep her priorities straight. If she's invited to give a talk and she has family plans, she will do the family stuff and blow off the meeting. Her daughter is a sophomore at Columbia, studying Hispanic Studies and Human Rights. After tea, we walked back to my apartment and met up with her daughter. I took them for a walk on the boardwalk by the East River, and then I brought them home and introduced them to Emma and Nate. They left before dinnertime.
I was afraid to look in the bathroom until David got home, because I knew if I saw the fungus again I would lose it. When David came home, we looked at the bathroom together. Jen, it was a miracle. Those painters had scraped everything down to the bone, it was pure white, and the fungus was GONE. So it was worth it. One less thing trying to kill me.
That's all for now. Today I’m going to St. Patrick’s cathedral to light candles with Cindy.
Love
Laura
____________________
From: Laura
Sent: Saturday, April 21, 2007 9:56 PM
To: Jennifer
Subject: Lighting candles
Hi Jen. Cindy and I met this afternoon at St. Patrick’s cathedral, as planned. It was a gray day, lightly drizzling when I got there. I was wearing a black hat called the Lachlan, which has a square crown, medium brim bucket, and knot trim, in a soft waterproof fabric. The hat was perfect for the rain outside, but was hot in the church, so once we were inside, I took off the hat and put on my Monk cap, which I had stuffed into my purse.
I had never been inside St. Patrick’s before. It was like a European cathedral. Incredibly high ceilings, ornate gold everywhere, and stained glass windows in vibrant colors with light shining through. When you come in, there’s a marble water fountain on your left, which Cindy said has holy water. I asked whether you drink it, and she said no, you bless yourself with it. Apparently you are allowed to bring a bottle with you and take some holy water for the road. I dipped my fingertips in it and sprinkled some on my head and shoulders.
We walked around the church. In the center were multiple long wooden benches. At the periphery were statues of saints, each enclosed by a couple of marble steps and a small fence. A little plaque near each saint explained the name of the saint and what the saint stood for. To your lower left as you looked at the saint, there were bins that had many round, relatively flat, unlit candles. More centrally, there were several rows of small glass cups, some with lit candles inside. The round candles fit perfectly into the glass cups. There was another bin full of wooden sticks, thinner and longer than chopsticks.
If you want to light a candle to a saint, you pick up an unlit candle, gently pull up the wick so that it’s standing rather than flat against the wax, and drop the candle into an empty glass cup. You take one of the wooden sticks, put the tip in the flame of one candle, and use that to light your candle. After the candle is lit, you can blow out the flame on your stick or extinguish it by putting it directly into this thin rectangular planter full of dirt. We enjoyed putting it into the dirt, because it made a satisfying little hissing sound as the fire went out.
Cindy recognized the saints, although I didn’t know most of them. I read all the cards. I was looking for a saint for 47-year-old women with lymphoma. None of the saints exactly fit the bill, but I was able to find saints for the sick, the dying, the departed, and people in need. I figured close enough, and lit the candles. After we had walked halfway around the church, there was a quiet area with several benches separate from the main central portion of the Cathedral. From the benches, there was a beautiful view of the stained glass windows and an altar at the front. We sat there quietly for awhile. Then we got up, looped around the other side of the church lighting candles for a few more saints, and left the cathedral.
Although it was near dusk, the light outside glared after the dim of the church. It was also jarring to come out of the cathedral and immediately be inundated by the bustle and commercialism of New York City, including an Armani Emporium right across the street. Cindy and I didn’t talk much. It had stopped drizzling by then. We walked back to the Upper East Side, where Cindy had parked her car. We gave each other a hug. She got into her car and I hopped a cab back to my apartment.
I know that lighting candles in a cathedral is an odd experience for a nice Jewish girl. I’m not a born again Christian (or any kind of Christian). When I was growing up, my parents shared a strong sense of Jewish cultural identity but weren’t religious—my dad used to say that many atrocities in world history were committed in the name of God. But confronting the fact that I might die makes me look for answers and spiritual solace wherever I can find them. I need to connect with other people, with the universe, and with what, if anything, is beyond it.
Tomorrow, back to earth. Emma and I have tickets to see a Broadway show.
Love
Laura
____________________
From: Laura
Sent: Sunday, April 22, 2007 6:18 AM
To: Q
Subject: Invitation
Dearest Q,
I’m writing this letter to invite you, Steve, Nick, and Ben to our "re-wedding." David and I are going to celebrate our 25th anniversary by getting unofficially married again. We're hoping to have the celebration on Sunday June 10 (the actual anniversary is June 13), either on our terrace if it's ready or in Carl Schurz Park if it's not. It will be very simple—just the eight of us (no rabbi or other officiating person) and we'll read something out loud and give each other a hug and a kiss and that's it. Afterwards we'll have dinner. Can you join us?
Love
Laura
____________________
From: Laura
Sent: Sunday, April 22, 2007 11:25 PM
To: Jennifer
Subject: Spring Awakening
Hi Jen. I had a wonderful day with Emma today. It was sunny and warm outside, maybe the first real spring day we've had so far. I wore a hat called the Olivia, which was a fabric cloche with piped crown and hand-rolled roses in a luscious lime green.
Emma came with me to drop off some dry cleaning, and then we went shopping. We went to Eileen Fisher, and bought some comfortable pants with an elastic waist in beige and black. I also got a button-down sweater that doesn't pull over my head. All my clothes have to be easy now. No energy to spend on snaps and zippers and buckles. We also got a great jacket for Emma from the Petites section. Then we went next door to Le Sportsac, and Emma helped me choose a pouch I can use to organize all the stuff I carry with me now (Meds, iPod, anti-nausea pills, pencils, toothbrush, toothpaste, numbing spray, and anesthetic cream).
After a quick lunch, Emma and I went to see "Spring Awakening," a Broadway musical about a young girl's coming of age. We’ve been listening to the CD, but hadn’t seen the show yet. Emma and I have been seeing musicals together for years. I love our excursions. I’ve always been a big fan of musicals, and the boys never want to go; David and Nate both believe that people should not spontaneously burst into song. It’s great to spend time with Emma—she’s such a bundle of joy and energy. Any experience is more fun if Emma is there to share it.
I remember our first mother-daughter outing to the theater more than a decade ago. Emma was three, and I had gotten tickets for us to see the ballet at Lincoln Center. All around us were mother-daughter couples, including one couple next to us with a mom in her 50s and a daughter in her 30s who have apparently been coming to Lincoln Center together for more than twenty years. Emma was very excited at the beginning of the show but when I turned to talk to her as the curtain rose at Intermission, I saw she was fast asleep. The most expensive nap in history.
We loved Spring Awakening. There were young actors we’d never seen before and the music had a strange combination of dissonance and consonance as well as a mix of styles including classic show-tune, gospel, and rock. Afterwards, I got Emma a Spring Awakening t shirt and the script of the play from which the musical was adapted (although the story was primarily an excuse for the music). We took a cab home and the four of us had dinner together. Nate and David went out to a jazz club. Emma and I listened to the music from the show and fell asleep before the CD ended.
Love
Laura
____________________
From: Laura
Sent: Monday, April 23, 2007 11:59 AM
To: Peter
Subject: Flow cytometry
Hi Peter. I had a repeat Omaya tap to see if there are still lymphoma cells in my CSF. As we discussed, I’d be very grateful if you could give me a buzz to discuss the results of the flow cytometry. I gather this is the critical test. I’m at x5728.
Thanks!
Laura
____________________
From: Laura
To: Phil
Sent: Mon Apr 23 12:07 AM
Subject: Go with the flow
I talked to Peter about the CSF flow results and he said it's negative for lambda or kappa clonal excess. Apparently that means there’s no lymphoma in the CSF! That’s one for the home team. After Cycle 3, we have to confirm that the cells are clear in the LP. I’ll set it up.
Laura
____________________
From: Laura
Sent: Monday, April 23, 2007 9:45 PM
To: Jennifer
Subject: Good news
Hi Jen. Thanks for your note. I know how hard it is to find a new nanny. I wish I could launch a Philadelphia spin-off of our Nanny Resource list-serve for you now and find you the perfect nanny. I’ll ask Carmen if she knows of any nannies in Philly.
I got some good news today—the flow cytometry on my CSF showed no clonal excess! In English, that means that the funky lymphocytes in my CSF are probably NOT lymphoma. I need to confirm that finding with another lumbar puncture (LP, or spinal tap), to make absolutely sure that the CSF is clear, but this raises my chances considerably. This result is just what I was hoping for, and I’m glad about it, but I can’t completely rejoice until we confirm the results with an LP, which will happen after I finish this round of chemo.
Yes, I'm being admitted tomorrow for more high-dose IV methotrexate. I'll probably go home Sunday. I hope I get admitted back to M8. They were so nice to me the last time.
Have to pack for my admission. My next emails will be from the hospital.
Love
Laura
____________________
From: Laura
Sent: Tuesday, April 24, 2007 9:49 PM
To: Maureen
Subject: Thank you
Hi Maureen. Thank you for leading Athena tonight! I already hear through the grapevine that you did a fantastic job. Can't wait to hear the details.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 25, 2007 1:21 AM
To: Gerald
Subject: Never mind
Hi Gerald. I’m writing to apologize for the desperate middle-of-the-night email I sent you a couple of days ago. I’m glad I got your autoreply that you’re out of town with limited email access. When I sent the email, it looked like my lymphoma wasn’t responding to the chemo and I got scared. Luckily, the news this week was great. My CSF is clear—no lymphoma! So we’re both off the hook for now. Hopefully, when you get back, you’ll read both of these emails at the same time and know not to worry.
In this place where we spend most of our lives fighting cancer, it’s good to have you on our team. I won’t be shy to write if I need you again.
Best wishes
Laura
____________________
From: Laura
Sent: Wednesday, April 25, 2007 2:54 AM
To: Jennifer
Subject: Second admission
Hi Jen. I'm sorry you're short of breath. You're so petite, the baby occupies a substantial portion of you, and when your diaphragm tries to descend to allow the lungs to expand, your belly is telling your diaphragm "stay away from me!" Don't worry, this too will pass, and soon you will have your beautiful baby boy. I can't wait to meet him!
Yesterday I was re-admitted for more IV methotrexate. Wearing my Monk cap, I went up to the 4th floor to see Phil in the Clinic. Cindy met me there—I wasn't sure if they were going to give me another intrathecal chemo today or not. After I had my fingerstick, they called us into the office. Phil told me that since my flow cytometry was negative, I don’t need to get more intrathecal chemo for the time being. HOORAY! He said that after the third round of IV chemo I’ll get an LP as well as repeat MRIs of the spine and brain, and then we’ll discuss with Sam whether I need more intrathecal chemo at all.
I went to the Admitting office, and finally I was admitted back to M8. It's a different room, but still fine. The computer has this weird soft rubber keyboard which takes a little getting used to, but the layout is normal (QWERTYUIOP etc.). I already had multiple visitors, including one who brought me flowers which I’m allowed to have today because my white blood cell count is still OK. When your white cell count falls after chemo, they don’t allow you to have flowers because they could be a source of infection.
The nurse “accessed the port” after I sprayed it, and hooked me up to the pump on the IV. The IV pump follows me everywhere, beeping whenever it’s unplugged. They started the bicarbonate drip and gave me the premeds. The methotrexate started at 7:30 pm and ran for four hours, so it was done at 11:30 pm. Now I'm getting more bicarb. I get hydrated all day tomorrow, and then I get the leukovorin rescue starting 24 hours after the methotrexate began. So far so good.
Terri is busy editing her movie on “The Physician as Patient.” She'll present it at the annual meeting of the American Society of Clinical Oncology (ASCO) in June.
I'm getting sleepy. While I go to sleep, I’m going to listen to Yo Yo Ma and Emanuel Ax doing the Brahms E Minor Sonata for Cello and Piano that you and I used to play together (Allegro non troppo, Allegretto Quasi Menuetto—Trio, and Allegro). Usually I’m asleep before the end of the first movement.
Love
Laura
____________________
From: Laura
Sent: Wednesday, April 25, 2007 3:32 PM
To: Women Faculty
Subject: Athena lives
To Our Guests at Athena last night:
I'm writing to thank you for coming to Athena last night. It means so much to me that Athena lives even when I can't be there—it means that our group is self-sustaining. I especially want to thank Maureen for hosting the meeting while I was getting chemo. And I actually did join in the toast you had for me—I just did it with methotrexate instead of white wine. I’ve now received 9 of 18 chemos (halfway)!
I'll beat this. You can't keep a good woman down.
Laura
____________________
From: Laura
Sent: Wednesday, May 2, 2007 6:29 AM
To: Jennifer
Subject: Tales from inside the house
Hi Jen. Sorry for my long silence. I had to focus on getting through my admission. But things are good, and I have many stories to tell you to catch up!
First, about the admission. I wrote to you that the high-dose methotrexate went fine, and the rest was also pretty uneventful, fluids and peeing. They put a plastic container euphemistically called a "hat" in the toilet that collects all the urine so that it can be measured, and they track my Intake and Output (Is and Os). The system is imperfect—they carefully monitor every cubic centimeter (cc) of fluid that I get IV, but then they ask me how much I drank, and I have no idea, so I just make up a number. No matter when they ask how much I’ve had to drink, I look at them confidently and say, “200 cc.”
They take my vital signs (pulse, temperature, blood pressure) every six hours. I had a running joke with the nurses' aides about the impressiveness of my vital signs. When the team came by to round in the morning I told them that I had the best vital signs on the floor. Some of the nurses' aides thought it was hysterical, and others seemed puzzled by me. Maybe some of the M8 patients getting bone marrow transplant who are in the hospital for weeks at a time get a little depressed and don’t talk much to the aides.
Apparently the fellow-in-training on my team heard me brag that I had the best vital signs on the floor, and when she presented me at Lymphoma rounds to the other doctors at a meeting behind closed doors she described me (in good humor) as a competitive overachiever. A friend of mine who is a lymphoma doc and attends lymphoma rounds told me what the fellow said. So the next day, when the fellow came to see me at rounds, I told her, "I hear that in rounds you called me a competitive overachiever... I just hope you realize that if I am a competitive overachiever, that I am the best competitive overachiever on the floor!" We laughed.
I had terrific nurses. My day nurse was usually Trish, and my night nurse was a wonderful person named (of all things) Jen! It’s amazing how much the nurses affect your hospital experience. The doctors breeze in, glance at your chart, ask a couple of questions, listen to your heart and lungs for two minutes, and then disappear into doctorland to write notes and orders. When you need a Tylenol at 3 am or something hurts, it’s the nurses who come. The tooth fairy must be a nursing school professor—I’m amazed at how softly some nurses can tiptoe into your room in the wee hours of the morning and do what needs to be done without waking you up.
Guess what—Nate grew up! I never knew that I would be able to identify the precise date when he grew up, but it was Thursday, April 26, 2007. It was around 7:30 in the morning, and David had dropped by to have breakfast with me in the hospital. He started coming to have breakfast with me most mornings when I was in the hospital, after he got the kids off to school. It was our time together. That morning, while David was visiting, I called Nate to tell him I was worried because he didn’t seem to be doing much homework. Over the phone, I told him that I was concerned that he would jeopardize what he has spent three years in high school trying to achieve.
Nate calmly explained that he had already spoken to all of his teachers. He had discussed every single subject, reviewing what assignments he has, which ones he has to do, which ones he can skip, which papers he can hand in late, etc. Nate said he wanted to be in control of his schoolwork, which showed a great deal of insight and self-awareness; he can’t control my cancer, but he can control his work. He said that he hadn't told me because he didn't want to burden me, but that he’s taking care of his work and he asked that I respect that. This was no teenager; he was mature and rational. I hung up the phone, turned to David, and said, "He's an adult."
I had a lot of visitors. It's nice to see people, but sometimes it got a little out of control. It's hardest when four people who don't know each other come at once. For my next admission, I'm going to get a guest book and have people sign in and make comments at the door.
I narrowly dodged a blood transfusion. I was anemic to begin with (my hemoglobin was 8 point something; normal is 12), and then when they hydrated the hell out of me, my hemoglobin went down to 7.5 (basically they diluted my hemoglobin, a process called “hemodilution”). I had agreed to be transfused if it went below 7 but really didn't want a transfusion if it wasn't essential. So I claimed I had just become a Jehova's witness ("Jehova was just here! I witnessed Him!”) and talked them into giving me darbopoietin, an injection that helps your bone marrow produce more red blood cells. Thank God I avoided the transfusion. The more they do to you, the greater the chances that something will go wrong—or, as we used to say in internship, the more you stay, the more you stay. My hemoglobin started to come up, so it worked out OK.
During this admission, I continued doing laps around the nurses’ station while listening to my iPod and pushing my IV pole. At first I counted the number of laps, but then I started just doing an hour every morning, before I shower. Just turn on Stevie Wonder (At the Close of a Century, Disc 2) and I'm ready to rock and roll. I listen to a lot of classical music in the room (this time I especially enjoyed Mozart Violin Sonatas with Hilary Hahn and Natalie Zhu), but when I’m walking I go for more popular stuff.
I was discharged before noon on Saturday. David came to pick me up with his mom, who was visiting from California. We had brunch with the kids at home, toasted bagels and unsalted nova and cream cheese and fresh orange juice, one of my favorite New York traditions. After she left, I went to pick up new prescription glasses and I can see! It’s miraculous.
Re the plan for chemo etc.—I'm getting IV R-CHOP again tomorrow. After my next admission, I’ll be done with the third cycle of chemo and they’ll do restaging tests.
Love
Laura
____________________
From: Laura
Sent: Saturday, May 5, 2007 2:56 AM
To: Jennifer
Subject: Seeing the light
Dearest Jen,
I’ve reached a new phase in this cancer thing. I've already finished 10/18 planned doses of chemo, so I’m past the halfway mark. I can see the light at the end of the tunnel.
I enjoyed my laps around the nurses’ station during my last admission so much that I decided to try walking on the beautiful boardwalk overlooking the East River by my house, called John Finley walk, in Carl Schurz Park. I enter the Park at 88th Street, right next to Gracie Mansion, which is the Mayor’s mansion (although Bloomberg doesn’t live there, because apparently his own apartment is even nicer!). When you walk on the boardwalk, you can see a majestic view of the river, boats, Roosevelt Island, the Triborough Bridge, light, and sky. A moderately paced walk from one side of the boardwalk to the other takes ten minutes, so you can do three complete laps back and forth in one hour. If you’re very ambitious, you can go down the staircase on one side of the boardwalk and walk further downtown as far as the East 60s, and then come back.
For the past several days, I’ve been doing this walk for an hour each morning, wearing my iPod, listening to different music every day (The Supremes, the soundtrack of Wicked, Carole King, James Taylor). It's fun! There’s a whole culture out there in the mornings, with runners, walkers, newspaper-readers, bike-riders, stroller-pushers, etc. I particularly love seeing the people play with their dogs in a special fenced off-area. The dogs hang out on one side and the people on the other, like it's a big cocktail party. The other day a man sat on a bench reading the paper, and next to him was his large long-legged dog. The dog’s front legs were on the pavement, but his butt and hind legs were up on the bench—he sat on the bench like a person! I wish I’d had my digital camera.
Today I went to my 61st Street office. I read through snail mail, which included more cancer presents, and emails. For the book I’m writing, I'm trying to decide whether to include just the emails I send, which are mostly to you, or whether I should also include emails I get from other people. I've gotten some wonderful and supportive emails, and it may be nice to include them, because one take-home message I'd like to give people is that if you reach out to people, sometimes they are there for you in wonderful ways. If I do include other people's emails, I’ll let the authors of those emails read the book and ask their permission to let me use the emails as written.
Tonight David and I had a date. We went to see Cassandra Wilson at the Blue Note. She is a wonderful jazz singer who doesn't do a lot of club dates in the States anymore. I wore a new black sleeveless dress, a turquoise sweater, pearls, and a hat called the Lucy, which is a black weave with a soft silk silver bow. The music and dinner were fabulous but we were crushed in like sardines. It was the first time David and I went out to hear jazz together since his birthday party. I looked at David during the music and pictured him at jazz clubs over the years, starting when he was a kid in the Bronx and too young to get into the clubs so he would listen by the door.
I figured out how this lymphoma will behave. I’m going to go into remission with the chemotherapy, and will transform this acute threat on my life into a nice chronic disease for which I'll have to take pills and have follow-up tests. Every few years I will recur, because that's what lymphomas do. When I recur, they’ll blast me with chemo, which I’ll tolerate remarkably well, and I’ll go into another remission. As time goes by, they’ll do more research; the chemo will get better and the remissions will be longer. And I could percolate around like this for twenty years, or maybe longer, until one day the recurrence will get me or I’ll be hit by a bus or something entirely different. And maybe I'll outlive everybody else, and be looking for someone to whom I can send emails at 2 am. Good plan?
How are you today? Do you feel like the baby will come any minute now? When is the actual due date again?
Love
Laura
____________________
From: Laura
Sent: Saturday, May 5, 2007 1:27 PM
To: Mike
Subject: Your hat
Hi Mike. I guess Mel told you about my lymphoma. How wonderful that you sent me two hats! I bought 15 hats at the beginning of chemo, and since then people have been sending me hats as presents (usually baseball caps). Until today, I had 28 hats; your hats are #29 and #30. At this rate, I'll be able to get through the rest of my chemo and never wear any hat more than three times!
I’m impressed that you wore one of the hats during a New Year’s Day Alcatraz swim, and the other when you finished the Ironman World Championship Triatholon in Hawaii. I love the card, “Wear these be victorious.”
Keep those prayers coming. If God hears from a rogue like you, he'll know something is up that he has to take seriously. Since you’re Greek, maybe you should pray to a Greek God. Let's get Zeus on board.
I'm doing great. I’m more than half done with the chemo, and I started walking about an hour every day on this gorgeous boardwalk by the East River, right next to my house. One of these days (after my white cells come back), I mayl jump in the water and become a Polar Bear like you
I'm writing a book about being a doctor and a patient, and it's more than half done. I was going to call it Both Sides Now like the Judy Collins song. Unfortunately, there are already about a million books with that title. These books include, but are not limited to, Both Sides Now: A Twenty-Five Year Encounter with Arabs and Israelis, “Both Sides Now: The Story of School Desegregation’s Graduates, Both Sides Now: Living and Dying in San Francisco, and, my personal favorite, Both Sides Now: One Man’s Journey through Womanhood. I had to come up with another name. I’ve decided to call it I Signed as the Doctor because when they gave me the consent forms to sign for those god-awful procedures when treatment began, I kept forgetting I’m the patient, so I signed as the doctor!
We're already fantasizing about the post-chemo celebration vacation to Turks and Caicos in September. Blue sea, white sand, not a care in the world, and I hear I can bump into Donna Karan by the pool. But I'll be in the ocean snorkeling with fish in the reef.
Love to Sheila. Keep the faith.
Love
Laura
____________________
From: Laura
Sent: Saturday, May 5, 2007 3:13 PM
To: Jung-min
Subject: Hi! And a few things
Jung-min—are you at the American Roentgen Ray Society meeting today? I left you a message on your cell—I called for a few reasons:
1. Good luck! Your presentation will be fabulous.
2. Can you pick up an abstract book for me? If they give you a hard time, tell them it is for a colleague of yours with cancer who couldn't come to the meeting. And ask for it early in the week—by later in the week, they tend to disappear.
3. Who is the moderator of the scientific session at which you’ll be presenting? Before the presentation starts, go up to the moderator, introduce yourself, and check out the podium. Make sure you know how to advance the slides or go back, how the pointer works, and where the timer is so you can pace yourself.
4. I’ve gotten multiple phone calls about you for recommendations for the various programs for which you’re applying, and I tell them you are fabulous. But promise me you won't accept any offers until we talk. I want to give you my best advice when you have all the offers on the table.
You can call me back on my cell, email me, or call me at home. Which day is your talk, and when are you coming back? Are you staying at the meeting hotel? Are the accommodations OK? Do you know anyone at the meeting?
It is a beautiful day in New York today. I hope your trip was gentle and that you are having a wonderful time. Enjoy!
Love
Laura
____________________
From: Laura
Sent: Tuesday, May 8, 2007 4:10 AM
To: Jennifer
Subject: Baby?
Dearest Jen,
How are YOU? What is the status of Baby Boy Menell? When I didn't hear from you I thought you had the baby—what's going on?
Can you email me your cell phone, home phone, and work phone numbers again? In my prednisone craze I can't find them. Otherwise, I’m doing great and will resume writing to you more regularly soon.
David and I saw the play "Inherit the Wind" on Broadway, and it was fantastic. It’s funny how a play about evolution vs. creationism can be so relevant to current times. I’d been excited to see Brian Dennehy, but I was really blown away by Christopher Plummer. They were both amazing.
I miss you and love you very much, and wish you every joy in your new son, whenever he decides to make his debut.
Love
Laura
____________________
From: Laura
Sent: Saturday, May 19, 2007 10:44 AM
To: Jennifer
Subject: Third admission
Dearest Jen,
It's been awhile since I wrote you a good long letter, so here it comes. I'm an inpatient now, finishing up Cycle 3 of chemo with the high-dose IV methotrexate and leucovorin rescue. The chemo went fine on Thursday—no problems. I got admitted a little earlier than usual, so they were able to start the chemo earlier, which made the schedule flow a little more smoothly.
I've been feeling good, in spite of my ongoing worry about the LP I’ll have when this cycle of chemo is over. I’m walking laps around the nurses’ station again with the iPod, but I miss the boardwalk. I had so many visitors during my last admission that this time I brought a guest book—you know, like they have at a country inn or someone’s wedding? The guest book had a soft green cover and cream-colored paper, and I had bought it at Kate’s Paperie. I invite my guests to sign in and make comments. I considered having a cover charge and a two-drink minimum, but apparently that violates hospital regulations.
Today I had tickets for Emma and me to see A Chorus Line that I had bought months ago, but since I’m still in the hospital, Emma invited a friend to go with her. It will be her first Broadway show without me. I hope they have fun.
So when is this baby going to appear? Keep me posted!
Love
Laura
____________________
From: Liberman, Laura/Radiology
Sent: Wednesday, May 23, 2007 1:27 PM
To: Jennifer
Subject: LP results
Hi Jen. I had my LP (lumbar puncture, or spinal tap) yesterday. The procedure is done by a neuroradiologist under fluoroscopy (“fluoro”), x-ray equipment that provides moment by moment images of your bones and other structures. You lie face down on a table, and then the table tilts so that your head is up and your feet are down, at a bit of an angle. The neuroradiologist uses the fluoro to help figure out exactly where to put the needle, which is usually between the third and fourth of the five lumbar vertebrae (the back bones in the lower spine). My wonderful friend Hilda did the LP, and Sam came in person to hand-deliver the fluid to the lab.
Today, they already have my LP results. There were only two white blood cells, down from 76, with no clonal excess. In English, that means no evidence of lymphoma! With the negative LP and the negative Omaya tap, we can say that the CSF is clear. I wish I could play the music from “I Will Survive,” but that will make me feel like dancing, and I’m supposed to lie flat for several hours after the LP (I actually shouldn’t even be sitting at the computer to write you this note, but I can’t resist). I bought the DVD of “Dream Girls,” which I never saw before, and Carmen and I are going to watch it together.
The baby is due any day now, right? You must be so excited. You’ll finally get to meet your son!
Love
Laura
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