by Laura Liberman, M.D.
Copyright © 2008 Laura Liberman
Paperback:
ISBN-13: 978-0-9822590-0-9
ISBN-10: 0-9822590-0-X
Hardcover:
ISBN-13: 978-0-9822590-1-6
ISBN-10: 0-9822590-1-8
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, recording or otherwise, without the prior written permission of the author.
Printed in the United States of America.
Library of Congress Control Number: 2009900330
This book does not provide medical advice such as that obtained in a direct consultation, and does not replace it. No recommendations regarding diagnosis or therapy are being made in this book by the author or by Memorial Sloan-Kettering Cancer Center. Medical issues that concern readers should be addressed directly with their health care practitioners.
http://isignedasthedoctor.blogspot.com
Booklocker.com, Inc.
2009
____________________
DEDICATION
This book is dedicated to my husband and the love of my life, David, and to our amazing two children, who make every day joyous. I thank the incredible Jennifer Menell, my “gentle reader,” and Cynthia Thornton, my guardian angel. I offer my work to all people living with cancer or other illness (either personally or in a loved one), whether recently diagnosed, in treatment, or survivors. This book is for us.
Sunday, November 30, 2008
Table of Contents, I Signed as the Doctor
Foreword
Chapter 1 Getting Ready
Chapter 2 Telling the Kids
Chapter 3 Treatment Begins
Chapter 4 Celebration
Chapter 5 Hats and Silver Linings
Chapter 6 First Admission
Chapter 7 Home
Chapter 8 Reaching Out
Chapter 9 Blurry Vision
Chapter 10 Good News, Bad News
Chapter 11 Test Results
Chapter 12 More Birthdays
Chapter 13 Chemo Ends
Chapter 14 How to Cope with Cancer: Lists
List 1 For Those with Cancer & Their Loved Ones
List 2 Suggested Reading
List 3 Suggested Music, Listening, and Viewing
List 4 Advice to Doctors
Afterword
Characters
Glossary of Medical Terms
Chapter 1 Getting Ready
Chapter 2 Telling the Kids
Chapter 3 Treatment Begins
Chapter 4 Celebration
Chapter 5 Hats and Silver Linings
Chapter 6 First Admission
Chapter 7 Home
Chapter 8 Reaching Out
Chapter 9 Blurry Vision
Chapter 10 Good News, Bad News
Chapter 11 Test Results
Chapter 12 More Birthdays
Chapter 13 Chemo Ends
Chapter 14 How to Cope with Cancer: Lists
List 1 For Those with Cancer & Their Loved Ones
List 2 Suggested Reading
List 3 Suggested Music, Listening, and Viewing
List 4 Advice to Doctors
Afterword
Characters
Glossary of Medical Terms
Foreword, I Signed as the Doctor
After I had been a radiologist at Memorial Sloan-Kettering Cancer Center in New York for 17 years, I developed left arm numbness, heaviness, and loss of dexterity. I consulted a neurologist and had three months of tests that resulted in the diagnosis of widely disseminated lymphoma, a malignancy of the lymphocytes, which are a group of white blood cells in the body that normally fight infection. I knew from the beginning that I would be treated at Memorial. I worked at the best cancer hospital in the world—where else would I go?
This book is organized primarily as a collection of emails that I wrote immediately before, during, and after treatment. Most of the emails are to my dear friend Jen, although a few are to other people. Occasionally I include an email sent to me by someone else. In writing this book, I aim to tell a survival story accessible to all readers, to help people living with cancer or other serious illness (either personally or in a loved one), and to help doctors take better care of their patients, from my unique perspective as both a cancer doctor and a cancer survivor.
The individuals who were kind enough to read and comment on the manuscript have asked me if it is memoir or fiction. The book is memoir. As President Barack Obama writes in the introduction to Dreams from My Father, the book is almost entirely true as written, but I have taken liberties, such as altering the order, time frame, or dates of events, compressing two characters into one, and changing some of the characters’ names or backgrounds, primarily to protect the privacy of others.
I gratefully acknowledge the help of my friends, including Ellen, who suggested that I write about my cancer experience; Maureen, who used her cancer battle to guide me through mine; my sister-in-law, Laura, whose resilience and humor gave me hope; Monique (“Q”), who helped me believe that I would survive; and Christine, who makes the world’s most fabulous hats. I’m indebted to Richard I. Dewitt for magnificent photography, Todd Engel for beautiful cover design, Angela Hoy for shepherding me through the publication process, and Steve Bennett and colleagues at AuthorBytes for spectacular work on the website, www.LauraLiberman.com.
I thank my father for his love and inspiration; his spirit is always with me. I thank my mother for her caring, support, and priceless artistic advice. I gratefully acknowledge my brother for teaching me the alphabet when I was three and for always being able to make me laugh. Thanks to all who wrote to me and prayed for me during my treatment, and to the amazing doctors and nurses at Memorial Sloan-Kettering Cancer Center, who saved my life.
This book is organized primarily as a collection of emails that I wrote immediately before, during, and after treatment. Most of the emails are to my dear friend Jen, although a few are to other people. Occasionally I include an email sent to me by someone else. In writing this book, I aim to tell a survival story accessible to all readers, to help people living with cancer or other serious illness (either personally or in a loved one), and to help doctors take better care of their patients, from my unique perspective as both a cancer doctor and a cancer survivor.
The individuals who were kind enough to read and comment on the manuscript have asked me if it is memoir or fiction. The book is memoir. As President Barack Obama writes in the introduction to Dreams from My Father, the book is almost entirely true as written, but I have taken liberties, such as altering the order, time frame, or dates of events, compressing two characters into one, and changing some of the characters’ names or backgrounds, primarily to protect the privacy of others.
I gratefully acknowledge the help of my friends, including Ellen, who suggested that I write about my cancer experience; Maureen, who used her cancer battle to guide me through mine; my sister-in-law, Laura, whose resilience and humor gave me hope; Monique (“Q”), who helped me believe that I would survive; and Christine, who makes the world’s most fabulous hats. I’m indebted to Richard I. Dewitt for magnificent photography, Todd Engel for beautiful cover design, Angela Hoy for shepherding me through the publication process, and Steve Bennett and colleagues at AuthorBytes for spectacular work on the website, www.LauraLiberman.com.
I thank my father for his love and inspiration; his spirit is always with me. I thank my mother for her caring, support, and priceless artistic advice. I gratefully acknowledge my brother for teaching me the alphabet when I was three and for always being able to make me laugh. Thanks to all who wrote to me and prayed for me during my treatment, and to the amazing doctors and nurses at Memorial Sloan-Kettering Cancer Center, who saved my life.
Chapter 1: Getting Ready
Reach out to your friends. Write about it.
____________________
From: Laura
Sent: Friday, March 2, 2007 10:55 PM
To: Jennifer
Subject: News
Hi Jen. I had hoped to talk to you on the phone today, but I'm in a whirlwind. I’ve just been diagnosed with an aggressive lymphoma, involving lymph nodes, bone marrow, spinal cord, and the fluid around my brain. I have to have a tube put into my chest on Monday, David and I tell the kids next weekend, I get another tube put in my brain the following Monday, and I start chemo on Thurs 3/15.
Apparently I've got a 50/50 shot of going into remission if I do this. I can make a 50/50 shot, don't you think?
I'll be playing stuff by ear—probably not taking care of patients for awhile, but will continue my research and administrative work.
I know that neither of us was religious when you lived in New York City, but we haven’t talked about it for awhile. If you pray, please put in a word for me; if you don't, would you mind starting now?
Love
Laura
____________________
From: Laura
Sent: Monday, March 5, 2007 9:37 PM
To: Jennifer
Subject: Today
Hi Jen. Today I had a tube called a Mediport catheter put in my chest in Interventional Radiology. Phil, my oncologist, said it wasn’t essential—that if I didn’t want the catheter, they could just put in an intravenous (IV) every time I need to get IV chemo—but I’ve seen too many patients who get stuck for every chemo, and they dread it. Also, it sounds like I’ll need six months of chemo, a lot of which will be intravenous. There’s no way my veins would hold out through all that. I figured getting the catheter would spare my veins from repeated needle sticks. And they said they can take it out after I’ve finished all of the chemo treatments.
The Mediport was no big deal. They give you IV sedation and then do the procedure under local anesthesia, using fluoroscopy, which looks like a TV screen that shows you x-rays of what’s going on in your body, so they can see what they’re doing. After making a tiny incision, they insert this sterile plastic catheter into the superior vena cava, a big vein in the chest that leads directly to the heart, and then close the skin over it. They put some sticky stuff called Dermabond on the skin over where the incision was made to help it heal, and then place a bandage over that. Once you have the catheter, they can deliver all the IV chemo through that.
It feels so odd to be a patient at the cancer hospital where I’ve been a doctor for 17 years. I must have thought that being a doctor, wearing that white coat, confers immunity—like cancer is something that happens to other people, and couldn’t possibly happen to me—but apparently that’s not the case. When they brought me the consent form for the Mediport, I signed the wrong part—I signed as the doctor, because that’s where I always sign! They said no, you have to sign as the patient now. Sometimes I feel like I’m in a play where I know all the lines, but they have me reading the wrong part.
Write to me—little things about you, Sophie, Jim, music, work, life in Philadelphia, and how your pregnancy is going.
Love
Laura
____________________
From: Laura
Sent: Tuesday, March 6, 2007 8:10 PM
To: Jennifer
Subject: Chemo
Hi Jen. It’s great that you’re still finding time to play the cello. I haven’t been playing the piano much these days, although I’m a dedicated listener. I miss playing music with you. For me, the best thing about taking that chamber music class at Mannes Conservatory ten years ago was that we got to meet! It was a real departure for me, because in all of my piano training as a kid, my teacher insisted that being a soloist was all that mattered; playing with another person was considered “accompanying” and a lesser art. I’m glad she was wrong.
When we met in that music class, I thought it was so cool that you played the cello, especially since traditionally the cello used to be considered “unladylike.” I thought, “Here’s a woman unabashed by gender stereotypes.” You go, girl.
Let me fill you in on how this all began and what treatment I’m going to get. Around Thanksgiving, I started to have neurological symptoms including loss of fine control in my left arm and left hand. It was subtle—I noticed it most when I was doing breast needle biopsies, because hitting a tiny target requires precise control of both hands, and my left hand just wasn’t doing what it was supposed to do. I saw a neurologist at my hospital named Sam, an expert in the field. Sam thought my neuro exam was OK, but he decided to do more tests.
I won’t bore you with the details, but the bottom line is that I had magnetic resonance imaging (MRI) exams that showed a mass in the cervical spinal cord, the area in the neck where Christopher Reeve’s paralyzing injury was. I had a spinal tap, which they call a lumbar puncture or LP, a procedure in which they stick a needle into your back and take out some fluid from around your spine and brain. I then had surgery to remove an enlarged lymph node. Subsequently, I had a bone marrow biopsy, which must be the most painful procedure on earth. The tests showed lymphoma, a malignancy of lymphocytes, a type of white blood cell that fights infection. Thank God for Sam—he was like a dog with a bone, and he wouldn’t let go until he got the diagnosis. Then he referred me to Phil, one of the best lymphoma docs here, to talk about treatment.
My husband came with me to see Phil for that appointment. Phil said it’s good that I’m relatively young (47) and pretty healthy, but not good that the lymphoma is in multiple sites (Stage IV), including the central nervous system. He discussed it with the other lymphoma docs, and they want to give me three different kinds of chemo, each one about six times, so probably 18 treatments in all, over the next six months. He says that even one of these kinds of chemo is tough to tolerate; three will be a real challenge.
For the lymph nodes and bone marrow, I need IV chemo called R-CHOP. The R is Rituximab, a monoclonal antibody directed against the specific malignant cells in my lymphoma; C is cyclophosphamide (also called cytoxan); H is doxorubicin (formerly Adriamycin; don’t ask me why they use “H” for that); O is vincristine (originally called Oncovin, hence the O); and P is prednisone, an oral steroid. The R-CHOP will be given at least once a month for six months; I go to the outpatient chemo suite, get my Mediport hooked up to an IV, and stay for seven or eight hours; then I go home on five days of oral prednisone.
The second kind of chemo is called high-dose IV methotrexate, which I’ll also probably need once a month for six months. They need very high doses of methotrexate to get into the spinal cord, and with it they have to give tons of IV fluids because otherwise the methotrexate can crystallize in the kidneys and cause kidney damage. So every time I get it, I have to get admitted to the hospital, have the IV hooked up to my Mediport, get a ton of fluid and the methotrexate, and follow it up with what’s called “leukovorin rescue,” which helps fight the toxicity of the methotrexate, and I get more fluid to flush the excess methotrexate out of my system. Each admission will be from three to five days.
I also need to get outpatient methotrexate given “intrathecally,” which means directly injected into a tube or catheter called an “Omaya” that they are going to neurosurgically implant into my brain. I’ll probably need six of those too, but I’m not sure exactly when and how often. Tomorrow, I have an appointment with the neurosurgeon who will put in the Omaya next week, so I’ll find out more.
David and I are trying to take all this in as the lymphoma doc is talking. I’m thinking if I’m going to die anyway, maybe I’d rather spend the next few months at home instead of getting brain surgery and chemotherapy. I asked Phil what was the chance of cure. “Cure?” he asked in a tone that suggested that the idea of cure was ludicrous. He said he couldn’t cure me, but there’s about a 50% chance that he could bring the lymphoma into remission, which means at least temporarily under control. That means that there’s a 50% chance that he won’t get me into remission and I’ll die. Then David and I went to see Sam. I asked Sam if he thought I should get treated, and he said yes.
After we finished with the doctors, David and I went to get a cup of coffee and talk. We were both shell-shocked. “If this is a nightmare, can I wake up now?” I asked him. He paused, head down, before responding, “I wish we could.” He looked as scared as I felt, and he doesn’t scare easily. I brought up the possibility of declining treatment. My symptoms are mild, I said; maybe the lymphoma will never progress; the treatment may be more dangerous than the disease. I don’t want a pyrrhic victory, winning the battle but losing the war—if killing the cancer kills the patient, it doesn’t do much good for anybody. But both Phil and Sam think I should be treated, I have a husband and two kids, and I have a 50% chance of surviving. I have to take that chance. I told David I’d take care of the lymphoma if he’d handle the paperwork. Together we’d decide what and how to tell the kids. He nodded.
Jen, I’m scared. I understand all of this stuff intellectually but it’s different when you’re the one going through it. You can get heart damage from the doxorubicin, permanent neurological changes from the vincristine, manic from the prednisone, and painful ulcers in the lining of your gut anywhere from top to bottom from the IV methotrexate. You can become a vegetable from the brain surgery or from the lymphoma in the central nervous system, and God knows what injecting chemo directly into the fluid around your brain can do. And chemo suppresses your immune system, leaving you vulnerable to infections which can kill you. So you can die from the chemo or from the lymphoma itself.
It’s weird. As a doctor, I’ve always advised patients not to think too far down the line, worrying about stuff that’s five steps away, because in medicine, each outcome affects what decisions you’ll have to make in the next step. It’s best just to deal with the immediate decision, see what happens, and take it from there. Apparently that’s easier said than done. Physician, heal thyself.
Please keep writing and praying, and I’ll do the same.
Love
Laura
____________________
From: Laura
Sent: Wednesday, March 7, 2007 9:12 AM
To: Ellen
Subject: Your talk
Hi Ellen. Hope you had a safe trip home!
The talk you gave to our women faculty about your book, “Every Other Thursday,” was incredibly well received. People were inspired by your experience of creating a group for mutual support and guidance consisting of women scientists and administrators that has met every other Thursday for 30 years. I’ll send you separately our survey results from your talk; these are among the best scores any event has received in the 15 months the Program for Women Faculty Affairs has existed!
Unfortunately, "Every Other Thursday" now has new meaning for me. I just found out that I have lymphoma, and I gather that my chance of surviving this is 50/50. Next week I begin six months of chemo, which will probably be every two weeks, and usually it will start Thursday: every other Thursday.
My husband has been amazing, and I've also found a small group of close women friends, one of whom has had cancer, who I know will help me get through this. Did your group ever get into health issues? Do you have any suggestions about group work for this?
Best wishes
Laura
____________________
From: Ellen
Sent: Wednesday, March 7, 2007 10:03 PM
To: Laura
Subject: Re: Your talk
Dear Laura,
Thank you for the wonderful personal comments and feed-back. I have been telling everyone that the MSKCC talk (and visit) was one of the most interactive and interesting, and just plain FUN that I've had. I'm delighted people responded so positively. Now to move to your personal news.
I am speechless. I received your message this morning from my step-daughter's home, where we often spend Sundays and Mondays; we went directly there from the Oakland airport Sunday when I returned from my east coast visit. I was online because I was checking flights to Florida for a sudden trip: my husband's brother passed away yesterday. It was hard, especially in that context, to process your bad news, but now home, I've reread it several times and settle down to reply. I realize you must have known most of this when we met last week, and understand your choice not to share it and have it "color" our whole interaction, though I would have been glad to talk of it then too. I appreciate your telling me now, and I hope I can be, albeit at a distance, one of the women friends who help you through this. I did feel a strong rapport, over books to be sure, but also attitude! You are perfect for the job you are putting so much into along side your medical profession.
50/50 must be incredibly hard to hear. It is nearly impossible to process statistics of that nature, even (or maybe especially) when your professional life is involved with detection and diagnosis.
Yes, we talk about health issues in Group. Scares that turn out OK (lumps that are benign), and Christine's that was major breast cancer. One of the things I quote in the book from her is "There is a new personal reality that comes from having cancer. When someone says you have a 30 percent instead of 20 percent chance of metastasis, what does that mean in life terms? Do you do something differently?" I remember how we celebrated when she was told chemo wouldn't be necessary, then the doctors reversed that decision based on a cellular observation that none of us really understood in medical terms. I think the MOST important lesson is the value of reaching out, leaning on others whenever you can, and knowing that no matter how supportive and wonderful your family (I'm glad your husband is amazing; he'll need to be, and you deserve it), you need others as well, because your family will be scared along with you.
I feel you know so much more than I do about cancer and medicine, and I'm no guru, even if you do like my book so much. But I will say that talking through the fears, and asking for everything you need and depending on your friends to say when they can't deliver and you need to ask someone else. The ability to ask is all critical. Also, one anecdote (I know everyone has them, but this one is very close to me). My closest friend from college had breast cancer which spread to her brain (10 years after the first diagnosis, lump removal chemo, and radiation, one year after a recurrence and mastectomy). She was given "2-3 years to live" after aggressive radiation. One of the things she chose to do with her time was to visit Peru (Machu Pichu in particular), which she did with a sister, a niece, and me. It was an incredible trip for all of us. But the important thing is that now, six years later, she is still alive, is working (she's a teacher) again, has moved to Oregon where her husband had always wanted to live, and is, well, living. Scans are now every six months instead of every three. Her chances for remission were considered much less than 50/50.
There is a certain fear in writing to someone dealing with such big issues, that one will say something "wrong.” Telling you Ruth's story is one of those, and I went back and rewrote it. But I believe that you can sort out the helpful from the useless and will forgive statements that are clumsy or ill-considered. I'll certainly keep in touch, and I ask you to keep me posted as you can. One thing my friend Ruth (above) did was to have a kind of e-mail "cancer journal" that she sent to about 30 friends and relatives that she wanted to keep informed. Sometimes frequent, sometimes with gaps of several months, but a way to share her experience without writing individual letters when her strength was limited.
I am missing yet another Group because of this funeral, but I will some time ask them for advice about group work, especially Christine. And with your permission, I'll tell Ruth about you. She's been involved for years (since way before the cancer) with something called co-counseling and I know that she derived much support from discussions in that structure. But maybe right now is the time for just getting started, and for collecting resources and surrounding yourself with people who can help.
With great affection and all the hope and strength I can offer,
Ellen
____________________
From: Laura
Sent: Thursday, March 8, 2007 5:40 AM
To: Ellen
Subject: Writing
Hi Ellen. Thanks for your speedy response! I love your idea of the “cancer journal.” I’ve been thinking about writing a book about being a cancer patient and a cancer doctor—I think it would help me deal with the experience and might be useful to other cancer patients, their families and friends, and doctors. And yes, please tell Ruth about me. I would love to hear from her and others in your Group.
While you were here, you asked about the other work I do at Memorial, but then we didn’t have time to get into it. I came to Memorial as a radiologist specializing in Breast Imaging in 1990, right after I finished training. For the next 15 years, I read mammograms, breast ultrasound exams, and MRI of the breast, and performed breast needle biopsies, where we take a sample of a breast abnormality with a needle to send to pathologists who see whether it’s cancer. I teach medical students, residents, fellows, and other doctors. I also do breast cancer research focusing on breast needle biopsies. I’ve written about 100 scientific papers and co-authored a book—like you, I love to write!
A few years ago, I was a member of a Women’s Task Force created by our Physician-in-Chief to discuss issues related to women faculty at Memorial. We had monthly discussions and gave a survey to women faculty to find out their concerns. We found that women were significantly more likely than men to say that they were unclear about promotion criteria, that they lacked a mentor or had a mentor who hindered their career, and that they struggled with issues of work/life balance. We suggested creating an ongoing office to address women faculty issues. The Program for Women Faculty Affairs (PWFA) was created in October 2005, and I was chosen to be the Director.
For the past two years, I’ve spent two days a week in the Women’s Office and three days a week in Breast Imaging. I love my work in the Women’s Office. Since the program was new, I got to help create it. I made a database of all faculty that included their departments, ranks, and tracks so I could get baseline data on positions of female vs. male faculty, created a website to share information relevant to women faculty, organized seminars on promotion criteria and other topics of interest to women faculty, began helping women individually with career decisions and promotion packages, and created Athena, an informal networking group for women faculty that meets monthly.
With this illness, I’m especially glad about my mid-career shift. I had reached a point in my life when I want to be more of a mentor and help other women succeed, rather than pursuing the spotlight for myself—kind of like I’d rather play chamber music than be the soloist. The Women’s Office work is rewarding but not as physically and emotionally grueling as clinical care of cancer patients. I also have more control over my schedule in the Women’s Office than in clinical work. The flexibility will be essential when I’m going through cancer treatment.
Got to go. I don’t sleep too well these days. I get up in the middle of the night and read or listen to music for awhile, but then I seem to hit a point when I run out of steam and have to lie down. I just hit that point.
I’ll keep you posted. I so appreciate your offer to be one of my women friends who gets me through this!
Warmly,
Laura
____________________
From: Laura
Sent: Thursday, March 8, 2007 10:07 AM
To: David
Subject: Yes we will
Hi Babe.
I love you. We will get through this, and then, what a book I'll have to write!
Love
Laura
____________________
From: Laura
Sent: Friday, March 2, 2007 10:55 PM
To: Jennifer
Subject: News
Hi Jen. I had hoped to talk to you on the phone today, but I'm in a whirlwind. I’ve just been diagnosed with an aggressive lymphoma, involving lymph nodes, bone marrow, spinal cord, and the fluid around my brain. I have to have a tube put into my chest on Monday, David and I tell the kids next weekend, I get another tube put in my brain the following Monday, and I start chemo on Thurs 3/15.
Apparently I've got a 50/50 shot of going into remission if I do this. I can make a 50/50 shot, don't you think?
I'll be playing stuff by ear—probably not taking care of patients for awhile, but will continue my research and administrative work.
I know that neither of us was religious when you lived in New York City, but we haven’t talked about it for awhile. If you pray, please put in a word for me; if you don't, would you mind starting now?
Love
Laura
____________________
From: Laura
Sent: Monday, March 5, 2007 9:37 PM
To: Jennifer
Subject: Today
Hi Jen. Today I had a tube called a Mediport catheter put in my chest in Interventional Radiology. Phil, my oncologist, said it wasn’t essential—that if I didn’t want the catheter, they could just put in an intravenous (IV) every time I need to get IV chemo—but I’ve seen too many patients who get stuck for every chemo, and they dread it. Also, it sounds like I’ll need six months of chemo, a lot of which will be intravenous. There’s no way my veins would hold out through all that. I figured getting the catheter would spare my veins from repeated needle sticks. And they said they can take it out after I’ve finished all of the chemo treatments.
The Mediport was no big deal. They give you IV sedation and then do the procedure under local anesthesia, using fluoroscopy, which looks like a TV screen that shows you x-rays of what’s going on in your body, so they can see what they’re doing. After making a tiny incision, they insert this sterile plastic catheter into the superior vena cava, a big vein in the chest that leads directly to the heart, and then close the skin over it. They put some sticky stuff called Dermabond on the skin over where the incision was made to help it heal, and then place a bandage over that. Once you have the catheter, they can deliver all the IV chemo through that.
It feels so odd to be a patient at the cancer hospital where I’ve been a doctor for 17 years. I must have thought that being a doctor, wearing that white coat, confers immunity—like cancer is something that happens to other people, and couldn’t possibly happen to me—but apparently that’s not the case. When they brought me the consent form for the Mediport, I signed the wrong part—I signed as the doctor, because that’s where I always sign! They said no, you have to sign as the patient now. Sometimes I feel like I’m in a play where I know all the lines, but they have me reading the wrong part.
Write to me—little things about you, Sophie, Jim, music, work, life in Philadelphia, and how your pregnancy is going.
Love
Laura
____________________
From: Laura
Sent: Tuesday, March 6, 2007 8:10 PM
To: Jennifer
Subject: Chemo
Hi Jen. It’s great that you’re still finding time to play the cello. I haven’t been playing the piano much these days, although I’m a dedicated listener. I miss playing music with you. For me, the best thing about taking that chamber music class at Mannes Conservatory ten years ago was that we got to meet! It was a real departure for me, because in all of my piano training as a kid, my teacher insisted that being a soloist was all that mattered; playing with another person was considered “accompanying” and a lesser art. I’m glad she was wrong.
When we met in that music class, I thought it was so cool that you played the cello, especially since traditionally the cello used to be considered “unladylike.” I thought, “Here’s a woman unabashed by gender stereotypes.” You go, girl.
Let me fill you in on how this all began and what treatment I’m going to get. Around Thanksgiving, I started to have neurological symptoms including loss of fine control in my left arm and left hand. It was subtle—I noticed it most when I was doing breast needle biopsies, because hitting a tiny target requires precise control of both hands, and my left hand just wasn’t doing what it was supposed to do. I saw a neurologist at my hospital named Sam, an expert in the field. Sam thought my neuro exam was OK, but he decided to do more tests.
I won’t bore you with the details, but the bottom line is that I had magnetic resonance imaging (MRI) exams that showed a mass in the cervical spinal cord, the area in the neck where Christopher Reeve’s paralyzing injury was. I had a spinal tap, which they call a lumbar puncture or LP, a procedure in which they stick a needle into your back and take out some fluid from around your spine and brain. I then had surgery to remove an enlarged lymph node. Subsequently, I had a bone marrow biopsy, which must be the most painful procedure on earth. The tests showed lymphoma, a malignancy of lymphocytes, a type of white blood cell that fights infection. Thank God for Sam—he was like a dog with a bone, and he wouldn’t let go until he got the diagnosis. Then he referred me to Phil, one of the best lymphoma docs here, to talk about treatment.
My husband came with me to see Phil for that appointment. Phil said it’s good that I’m relatively young (47) and pretty healthy, but not good that the lymphoma is in multiple sites (Stage IV), including the central nervous system. He discussed it with the other lymphoma docs, and they want to give me three different kinds of chemo, each one about six times, so probably 18 treatments in all, over the next six months. He says that even one of these kinds of chemo is tough to tolerate; three will be a real challenge.
For the lymph nodes and bone marrow, I need IV chemo called R-CHOP. The R is Rituximab, a monoclonal antibody directed against the specific malignant cells in my lymphoma; C is cyclophosphamide (also called cytoxan); H is doxorubicin (formerly Adriamycin; don’t ask me why they use “H” for that); O is vincristine (originally called Oncovin, hence the O); and P is prednisone, an oral steroid. The R-CHOP will be given at least once a month for six months; I go to the outpatient chemo suite, get my Mediport hooked up to an IV, and stay for seven or eight hours; then I go home on five days of oral prednisone.
The second kind of chemo is called high-dose IV methotrexate, which I’ll also probably need once a month for six months. They need very high doses of methotrexate to get into the spinal cord, and with it they have to give tons of IV fluids because otherwise the methotrexate can crystallize in the kidneys and cause kidney damage. So every time I get it, I have to get admitted to the hospital, have the IV hooked up to my Mediport, get a ton of fluid and the methotrexate, and follow it up with what’s called “leukovorin rescue,” which helps fight the toxicity of the methotrexate, and I get more fluid to flush the excess methotrexate out of my system. Each admission will be from three to five days.
I also need to get outpatient methotrexate given “intrathecally,” which means directly injected into a tube or catheter called an “Omaya” that they are going to neurosurgically implant into my brain. I’ll probably need six of those too, but I’m not sure exactly when and how often. Tomorrow, I have an appointment with the neurosurgeon who will put in the Omaya next week, so I’ll find out more.
David and I are trying to take all this in as the lymphoma doc is talking. I’m thinking if I’m going to die anyway, maybe I’d rather spend the next few months at home instead of getting brain surgery and chemotherapy. I asked Phil what was the chance of cure. “Cure?” he asked in a tone that suggested that the idea of cure was ludicrous. He said he couldn’t cure me, but there’s about a 50% chance that he could bring the lymphoma into remission, which means at least temporarily under control. That means that there’s a 50% chance that he won’t get me into remission and I’ll die. Then David and I went to see Sam. I asked Sam if he thought I should get treated, and he said yes.
After we finished with the doctors, David and I went to get a cup of coffee and talk. We were both shell-shocked. “If this is a nightmare, can I wake up now?” I asked him. He paused, head down, before responding, “I wish we could.” He looked as scared as I felt, and he doesn’t scare easily. I brought up the possibility of declining treatment. My symptoms are mild, I said; maybe the lymphoma will never progress; the treatment may be more dangerous than the disease. I don’t want a pyrrhic victory, winning the battle but losing the war—if killing the cancer kills the patient, it doesn’t do much good for anybody. But both Phil and Sam think I should be treated, I have a husband and two kids, and I have a 50% chance of surviving. I have to take that chance. I told David I’d take care of the lymphoma if he’d handle the paperwork. Together we’d decide what and how to tell the kids. He nodded.
Jen, I’m scared. I understand all of this stuff intellectually but it’s different when you’re the one going through it. You can get heart damage from the doxorubicin, permanent neurological changes from the vincristine, manic from the prednisone, and painful ulcers in the lining of your gut anywhere from top to bottom from the IV methotrexate. You can become a vegetable from the brain surgery or from the lymphoma in the central nervous system, and God knows what injecting chemo directly into the fluid around your brain can do. And chemo suppresses your immune system, leaving you vulnerable to infections which can kill you. So you can die from the chemo or from the lymphoma itself.
It’s weird. As a doctor, I’ve always advised patients not to think too far down the line, worrying about stuff that’s five steps away, because in medicine, each outcome affects what decisions you’ll have to make in the next step. It’s best just to deal with the immediate decision, see what happens, and take it from there. Apparently that’s easier said than done. Physician, heal thyself.
Please keep writing and praying, and I’ll do the same.
Love
Laura
____________________
From: Laura
Sent: Wednesday, March 7, 2007 9:12 AM
To: Ellen
Subject: Your talk
Hi Ellen. Hope you had a safe trip home!
The talk you gave to our women faculty about your book, “Every Other Thursday,” was incredibly well received. People were inspired by your experience of creating a group for mutual support and guidance consisting of women scientists and administrators that has met every other Thursday for 30 years. I’ll send you separately our survey results from your talk; these are among the best scores any event has received in the 15 months the Program for Women Faculty Affairs has existed!
Unfortunately, "Every Other Thursday" now has new meaning for me. I just found out that I have lymphoma, and I gather that my chance of surviving this is 50/50. Next week I begin six months of chemo, which will probably be every two weeks, and usually it will start Thursday: every other Thursday.
My husband has been amazing, and I've also found a small group of close women friends, one of whom has had cancer, who I know will help me get through this. Did your group ever get into health issues? Do you have any suggestions about group work for this?
Best wishes
Laura
____________________
From: Ellen
Sent: Wednesday, March 7, 2007 10:03 PM
To: Laura
Subject: Re: Your talk
Dear Laura,
Thank you for the wonderful personal comments and feed-back. I have been telling everyone that the MSKCC talk (and visit) was one of the most interactive and interesting, and just plain FUN that I've had. I'm delighted people responded so positively. Now to move to your personal news.
I am speechless. I received your message this morning from my step-daughter's home, where we often spend Sundays and Mondays; we went directly there from the Oakland airport Sunday when I returned from my east coast visit. I was online because I was checking flights to Florida for a sudden trip: my husband's brother passed away yesterday. It was hard, especially in that context, to process your bad news, but now home, I've reread it several times and settle down to reply. I realize you must have known most of this when we met last week, and understand your choice not to share it and have it "color" our whole interaction, though I would have been glad to talk of it then too. I appreciate your telling me now, and I hope I can be, albeit at a distance, one of the women friends who help you through this. I did feel a strong rapport, over books to be sure, but also attitude! You are perfect for the job you are putting so much into along side your medical profession.
50/50 must be incredibly hard to hear. It is nearly impossible to process statistics of that nature, even (or maybe especially) when your professional life is involved with detection and diagnosis.
Yes, we talk about health issues in Group. Scares that turn out OK (lumps that are benign), and Christine's that was major breast cancer. One of the things I quote in the book from her is "There is a new personal reality that comes from having cancer. When someone says you have a 30 percent instead of 20 percent chance of metastasis, what does that mean in life terms? Do you do something differently?" I remember how we celebrated when she was told chemo wouldn't be necessary, then the doctors reversed that decision based on a cellular observation that none of us really understood in medical terms. I think the MOST important lesson is the value of reaching out, leaning on others whenever you can, and knowing that no matter how supportive and wonderful your family (I'm glad your husband is amazing; he'll need to be, and you deserve it), you need others as well, because your family will be scared along with you.
I feel you know so much more than I do about cancer and medicine, and I'm no guru, even if you do like my book so much. But I will say that talking through the fears, and asking for everything you need and depending on your friends to say when they can't deliver and you need to ask someone else. The ability to ask is all critical. Also, one anecdote (I know everyone has them, but this one is very close to me). My closest friend from college had breast cancer which spread to her brain (10 years after the first diagnosis, lump removal chemo, and radiation, one year after a recurrence and mastectomy). She was given "2-3 years to live" after aggressive radiation. One of the things she chose to do with her time was to visit Peru (Machu Pichu in particular), which she did with a sister, a niece, and me. It was an incredible trip for all of us. But the important thing is that now, six years later, she is still alive, is working (she's a teacher) again, has moved to Oregon where her husband had always wanted to live, and is, well, living. Scans are now every six months instead of every three. Her chances for remission were considered much less than 50/50.
There is a certain fear in writing to someone dealing with such big issues, that one will say something "wrong.” Telling you Ruth's story is one of those, and I went back and rewrote it. But I believe that you can sort out the helpful from the useless and will forgive statements that are clumsy or ill-considered. I'll certainly keep in touch, and I ask you to keep me posted as you can. One thing my friend Ruth (above) did was to have a kind of e-mail "cancer journal" that she sent to about 30 friends and relatives that she wanted to keep informed. Sometimes frequent, sometimes with gaps of several months, but a way to share her experience without writing individual letters when her strength was limited.
I am missing yet another Group because of this funeral, but I will some time ask them for advice about group work, especially Christine. And with your permission, I'll tell Ruth about you. She's been involved for years (since way before the cancer) with something called co-counseling and I know that she derived much support from discussions in that structure. But maybe right now is the time for just getting started, and for collecting resources and surrounding yourself with people who can help.
With great affection and all the hope and strength I can offer,
Ellen
____________________
From: Laura
Sent: Thursday, March 8, 2007 5:40 AM
To: Ellen
Subject: Writing
Hi Ellen. Thanks for your speedy response! I love your idea of the “cancer journal.” I’ve been thinking about writing a book about being a cancer patient and a cancer doctor—I think it would help me deal with the experience and might be useful to other cancer patients, their families and friends, and doctors. And yes, please tell Ruth about me. I would love to hear from her and others in your Group.
While you were here, you asked about the other work I do at Memorial, but then we didn’t have time to get into it. I came to Memorial as a radiologist specializing in Breast Imaging in 1990, right after I finished training. For the next 15 years, I read mammograms, breast ultrasound exams, and MRI of the breast, and performed breast needle biopsies, where we take a sample of a breast abnormality with a needle to send to pathologists who see whether it’s cancer. I teach medical students, residents, fellows, and other doctors. I also do breast cancer research focusing on breast needle biopsies. I’ve written about 100 scientific papers and co-authored a book—like you, I love to write!
A few years ago, I was a member of a Women’s Task Force created by our Physician-in-Chief to discuss issues related to women faculty at Memorial. We had monthly discussions and gave a survey to women faculty to find out their concerns. We found that women were significantly more likely than men to say that they were unclear about promotion criteria, that they lacked a mentor or had a mentor who hindered their career, and that they struggled with issues of work/life balance. We suggested creating an ongoing office to address women faculty issues. The Program for Women Faculty Affairs (PWFA) was created in October 2005, and I was chosen to be the Director.
For the past two years, I’ve spent two days a week in the Women’s Office and three days a week in Breast Imaging. I love my work in the Women’s Office. Since the program was new, I got to help create it. I made a database of all faculty that included their departments, ranks, and tracks so I could get baseline data on positions of female vs. male faculty, created a website to share information relevant to women faculty, organized seminars on promotion criteria and other topics of interest to women faculty, began helping women individually with career decisions and promotion packages, and created Athena, an informal networking group for women faculty that meets monthly.
With this illness, I’m especially glad about my mid-career shift. I had reached a point in my life when I want to be more of a mentor and help other women succeed, rather than pursuing the spotlight for myself—kind of like I’d rather play chamber music than be the soloist. The Women’s Office work is rewarding but not as physically and emotionally grueling as clinical care of cancer patients. I also have more control over my schedule in the Women’s Office than in clinical work. The flexibility will be essential when I’m going through cancer treatment.
Got to go. I don’t sleep too well these days. I get up in the middle of the night and read or listen to music for awhile, but then I seem to hit a point when I run out of steam and have to lie down. I just hit that point.
I’ll keep you posted. I so appreciate your offer to be one of my women friends who gets me through this!
Warmly,
Laura
____________________
From: Laura
Sent: Thursday, March 8, 2007 10:07 AM
To: David
Subject: Yes we will
Hi Babe.
I love you. We will get through this, and then, what a book I'll have to write!
Love
Laura
Chapter 2: Telling the Kids
Be sensitive to your family.
____________________
From: Laura
Sent: Saturday, March 10, 2007 6:43 AM
To: Jennifer
Subject: Saturday
Dearest Jen,
Thank you so much for your daily notes; I can't tell you how much I enjoy reading them. I’m so glad you kept the maternity clothes from your last pregnancy. I bet you look great in your new Pashmina. I've never seen a Pashmina in real life—only on one episode of Friends, when Jennifer Aniston goes out on a shopping spree.
I've been in a flurry of activity since I last wrote. Wednesday I saw the neurosurgeon, Mark, to plan the Omaya. He explained how he was going to neurosurgically insert the Omaya catheter into my brain, so they can deliver chemo directly into the cerebrospinal fluid (CSF), which is the fluid around the brain, around the spinal cord, and in several little water-balloon-like structures in the brain called “ventricles.” Mark is a fabulous surgeon and a likeable guy, quiet with a warm sense of humor, although I told him I preferred our relationship when it was limited to my reading films about the hardware he's putting in other people! He says they used to do about 50 Omayas a year at Memorial, but now they do about 20. He's done a lot of them, and knows what he's doing.
There were two moments in the visit that I didn't like. The first was when he told me how they have to drill a hole in the skull and put the Omaya through the hole and through brain tissue until the tip reaches one of the ventricles. In describing the procedure, he showed me a picture of a brain with a catheter in it. I had never quite realized how far the ventricles are from the surface of the brain!
The second part of the visit that I didn't like was when he told me the Omaya will be there forever. I hadn't realized that. It makes me feel like my life is divided into my world before this Monday (pre-Omaya) and my world after this Monday (post-Omaya). They also have to do this under general anesthesia. So the brain surgery part is intimidating. You know how in your whole life, when people ask you to do something hard, you always think to yourself, "Well, at least it's not brain surgery!" Well, now it IS brain surgery, so what am I supposed to say—maybe, "It isn't rocket science"?
When the neurosurgeon left the room I asked his nurse who's been at Memorial for 36 years if it was OK to cry for a minute and she said it was. She told me that when she used to be a floor nurse, she would tell the patients they were allowed to cry for 20 minutes a day. Apparently there are no restrictions on the time of day you can cry, and you're able to do it all at once or break it into smaller sessions, eg 2 crying sessions of 10 minutes each, or 4 crying sessions of 5 minutes each, or even 10 crying sessions of 2 minutes each. I took her card and her number. That advice may come in handy.
Wednesday night I dragged David to a seminar run by Social Work on how to tell your kids that you have cancer. I wish you had been there to give me the child psychologist’s perspective on the seminar. We met in a small conference room in the hospital. There are three big windows that look out on the Rockefeller campus across the street, but the curtains were drawn. Usually the room is arranged formally, with all the chairs lined up in rows facing the podium in front. For this seminar, it was more casual, with the chairs in a little circle.
David was on my left, and my friend Maureen was on my right. Maureen is a doctor here—last year, when her daughter Julie was 10, Maureen was diagnosed with endometrial cancer, and had surgery, radiation, and chemotherapy. She lost her hair with the chemo, and it’s coming back even a more flaming red than it was before. Maureen is heroic and blunt—the cancer was no match for her. She’s seen it all, tells it like it is, and is fearless—a terrific ally to have in your corner.
The seminar began by us going around the circle and all the participants introducing themselves and telling why they were there. The people at the seminar were a bizarre mix. The first woman on David's left was an inpatient wearing her hospital gown and pushing her IV pole, and she seemed disturbed. She has cancer widely spread throughout her body, but they aren’t sure where it began. Her kids are grown up but she has a 5-year-old granddaughter in her care. She would not stop talking. The social worker finally had to interrupt after she had spent ten minutes on an intensive discussion of every symptom and test she had that led up to her diagnosis of cancer.
On her left was a couple, a man and his extremely pregnant wife, and she was crying hysterically from the moment they walked into the room. I thought she must have something terrible. Turns out her father has cancer, and what they're worried about is, how do they tell their 2-year-old daughter that Grampa is sick? I'm sorry, let's not compete over whose problem is worse, but telling the two-year-old that Grampa is sick just isn’t on the same page as telling your teenage kids that you have cancer. Afterwards, Maureen told me, "I know how they should tell their two-year-old. Say 'Grampa's sick,' and then turn on Blue's Clues, and she'll be fine."
The third couple in the group was a husband and wife in their late 30s or early 40s. The mom, who is fine, lost her mother to cancer at a young age, and hadn't been given complete information. The dad has had adrenocortical carcinoma for three years, very aggressive and not treatable by chemo. He has had multiple recurrences, all treated surgically, so he has had to disappear from home for months at a time. Apparently they never told their son, Billy, that Dad has cancer; when Dad needs surgery, he just disappears in the hospital for a month or two, and they tell the son that it's orthopedic surgery due to a skiing accident Dad had years ago.
Now Billy is 7, and the mother really wants to tell the kid, but the father refuses. In the session, the father kept saying, “Nobody believes that I have cancer because I look so good!” It’s true he looked pretty good—since he's never had chemo he still has his hair, etc.—but facts are facts, and he does have cancer. Finally the wife told her husband quietly, “I think you don’t want to tell him because you can’t admit to yourself that you have cancer. Maybe you figure that if you don’t tell Billy, it isn’t real. Well, it’s real, and he deserves to know, just like I deserved to know when my mom had cancer but I wasn’t given the chance.” Her husband blinked at her, speechless. When he finally tells Billy, I bet the truth will hit them both pretty hard.
The next person was a man about our age whose wife has terminal pancreatic cancer. I gather the wife goes in and out of consciousness, and he doesn't know what or how to tell their four-year-old daughter. She had drawn a picture for her mother, a crayon drawing of the family, but her mother could not recognize what it was. He brought in the picture to show us, holding it with the tenderness that he obviously feels for his wife and daughter. He looked lost and afraid; he clearly loved his daughter very much, but did not know how to help her.
David and I went last. I said I have lymphoma and about to have brain surgery and start chemo, and we are trying to figure out how to tell our teenage kids. He just said, “I’m David, and I’m Laura’s husband.” David is a private person, especially with people he doesn’t know. I knew that sharing the intimate details of his personal life with strangers at a seminar wasn’t his style; he was there for me.
The social worker who ran the meeting was named Tara, which made me think of Gone with the Wind. She was young—maybe in her mid thirties—with short dark hair and sparkly eyes. She told us that she had been working with cancer patients and their families for ten years, and that we would tailor the discussion toward the issues confronting the people in the seminar.
After the introductions, Tara gave us a bunch of "How to Tell Your Kids You Have Cancer" literature. Some of it was geared towards very young kids, which won’t work for Nate at age 17 and Emma at age 14. For example, they had an interactive workbook with a colorful cover and outlines of a female body, so your kids can draw where Mommy’s cancer is; there was also a “his” version with a male body to use if they want to draw Daddy’s cancer. We had the oldest kids in the room, and we were the only ones who were there before cancer treatment started—everyone else had been weaving elaborate webs of deception for months or years.
“Be honest, but don’t overload the kids with information,” Tara explained with a faint southern drawl. “You want to answer their questions, and make it clear that throughout all this, you’re still their parents, and you’ll take care of them.” She emphasized the importance of having time together as a family. In the cab on the way home, David and I talked about how lucky we are to be on the same page about how and what to tell the kids, but we’ve been on the same page for most of the 31 years we’ve known each other. We're planning to tell the kids tomorrow. I wish I didn't have to rock their world. But it would rock their world more if I'm not around, and I have to do this chemo to stick around, and I'm going to do whatever it takes.
Wednesday I had pre-admission tests, including an echocardiogram and an EKG to make sure my heart’s OK. Thursday I went to the dentist for a pre-chemo cleaning of my teeth. Unfortunately they found two cavities, so I had to have them filled. I'm trying to seal up all potential portals of infection—I feel like I'm drawing up the drawbridges of some ancient castle.
Maureen had told me about the wig store on the West Side that she used when she had chemo, and she met me there Thursday afternoon. When I entered the store, a gay cross-dressing hair stylist named J.T., who has won Emmies for hair design, put me in a little room. I was wearing a green skirt, a sweater, and my Ugg boots. My hair is even longer than the last time you saw me, about five inches below my shoulders, curly brown with more flecks of gray than you remember, and kind of wild. J.T. took one look at me and said, "You're a low maintenance kind of gal, huh?" I laughed and asked, "Isn't it enough that I have cancer and need chemo and now you're dissing my hair?"
I tried on a few brunette wigs, and the two I liked best were long—one curly and one straight. I told J.T. I wanted to try a blonde wig because it was my chance to see if blondes have more fun. He said, "Honey, I've been blonde, and trust me, they DON'T." J.T. has named all the wigs—the curly one was Chelsea, named for Chelsea Clinton, and the straight one was Jennifer (maybe for Jennifer Garner?) and actually looks more like your hair than mine. I gather I'll lose my hair about a month after the chemo starts. Then I go back to the wig place, they cut off the rest of my hair, and I go home wearing one of the wigs.
Yesterday, I went on a “field trip” to see our new suite of offices with our office assistant, Lea. The building has been there awhile, but they just finished construction on our suite, and nobody has moved in yet. I had heard the building was a dump, with no security guard. Apparently there was a report of a flasher in the stairway two weeks ago, and when I told one of the administrators, she said, "Great, now you guys will have entertainment." I’ve since heard that the woman who saw the flasher “wasn’t sure he was flashing.” How can you be uncertain about that? It seems to me that if you see a guy in the stairway with his trousers unzipped, there are two options: either he’s flashing or he’s peeing, and neither is something you want a guy to do in your stairway.
Anyway, the suite was beautiful—lots of light, big central space with offices all around, plenty of computers, a small kitchen area, two bathrooms, and a high-tech conference room. Best of all—the office they have planned for me has real windows! It is so sunny compared to our old suite, and much more spacious. I thought I'd never go there, but now I think I will. It will be a beautiful, quiet place to write.
Today Nate takes his SATs—I hope so much for his sake that they go OK. Tomorrow David and I tell the kids, and Monday I get admitted for the neurosurgery. If all goes well, I come home on Tuesday night, rest Wednesday, and have my first chemo on Thurs 3/15.
Got to go—Nate got up and we're going to have the pre-SAT breakfast!
Keep writing—I love your letters.
Love
Laura
____________________
From: Laura
Sent: Sunday, March 11, 2007 11:29 PM
To: Jennifer
Subject: Telling the kids
Hi Jen. Remember the time a couple of years ago, when you cut back on your office hours to make your child psych practice part-time, four days a week, after Sophie was born? You told me then that you thought you had found the right balance, and I told you how few women ever get to say that. I think it’s great that you’re thinking of cutting back on work from four to three days a week after the new baby. This balance thing is a moving target. As soon as you get it right, something in life shifts, like a new baby, or aging parents, or moving to a new city, or an illness, and you have to go with it. I read in an article that people are calling it “work-life fit” instead of “work-life balance” these days, because we now recognize that balance is generally unattainable.
We actually told the kids yesterday, rather than today as we had planned. Nate felt good about his SATs, and we were all together. I was in the bedroom with David and I told him that it felt like the right time to tell them, and that letting them know today will give them a little more time to deal with it before the surgery. It would also let them see me go to bed and wake up at home in the morning, a little bit of normal before Armageddon. David agreed.
After dinner we were all sitting in the family room. You wouldn’t recognize the kids, Jen—they’ve gotten so big! Nate is taller than I am, with sandy hair that always looks a little tousled, an athletic build, and those green eyes he got from David. Emma is petite, about 5’2”, and incredibly chic; her eyes are still that combination of green and blue, half David’s and half mine (all hers). She’s wearing her brown hair shorter now, in wisps around her face, and layers her clothes. I love how she wears jewelry—she’ll have multiple necklaces, all different, but they look great together, and she prefers wearing a different earring in each ear (“I don’t like symmetry,” she explains). I sat on the couch, with Nate on my left and Emma on my right, holding both of their hands. David sat in a chair right next to us. I told them that I have lymphoma, a type of cancer, and that it's in my lymph nodes, bone marrow, spinal cord, and the fluid around my brain.
I explained that I need six months of chemotherapy, which is strong medicine to kill the cancer cells. I said that I was going to get chemo at least every two weeks, and for every other one I have to get admitted to the hospital for a few days. I told them that the chemo will make me look sick because I’ll lose my hair but that just means the chemo is working. I assured them that cancer is not contagious, that they can't catch it, that they didn't give it to me, that it's nobody's fault, these things just happen. I said that they could talk to anyone they liked about it, that it was no secret, and that I had gotten names for each of them of a psychiatrist they could talk to if they wanted. I told them that we were still their parents, that we would take care of them, and that David is the best dad in the world.
I told them that some people with cancer are cured, some get better, some stay the same, some get sicker, and some die. I told them that my hospital and my doctors were the best on the planet, that I was going to do what the doctors told me, and that I would do everything in my power to be in the group that gets better, and that they know how stubborn I can be! I told them that I needed to have a tube in my chest and one in my head for the chemo, and that I was getting admitted to the hospital on Monday for one night to get the tube in my head. I reminded them that their Aunt Laura survived cancer, and so did their Grandma. And I repeated what I said to my beautiful sister-in-law when she was diagnosed with cancer: it sucks but we'll get through it. She did, and so will we.
David didn’t say much during the whole exchange, but he was there, quietly lending support for all of us. His response made me think of our wedding in his parents’ house on Long Island. It was time for each of us to have a sip of red wine. Even though we had known each other for six years and lived together for two, I was shaking so hard that I could hardly hold the glass. He reached up and steadied my hands for me, so I could have a drink without spilling wine on my dress or dropping the glass. He has always been there, quietly strong. We’re going to need that now more than ever.
Later that night, David and I spoke to each of them separately. Emma wanted details, including a full explanation, complete with diagrams, of where the lymphoma was, where all the tubes were going to be, how many chemos I needed, and what the treatments would involve. Nate just got pale and serious, held my hand, and said, “I love you, Mom.”
The kids have always had their own distinct ways of processing information. I remember a day more than a decade ago when we passed a dead bird on the street while we were walking to school. Emma asked questions: “What is that? Is that a dead bird? Why did the bird die?” Nate became silent and asked Emma to please stop talking about it. Emma deals with her fears by verbalizing them and seeking clarification, while Nate prefers to receive information only on a “need to know” basis. After we spoke to the kids, Emma went into Nate’s room and they talked in private. David and I thought that was a good sign that the kids will help each other through this.
On Sunday we looked at some college application materials with Nate, and I took Emma out to tea. After we got home, Emma and Nate spent most of the rest of the day downloading iTunes on my computer to put on my iPod. David had the brilliant idea to get me an iPod and have the kids put songs on it so I can listen to music while I’m getting chemo. It’s great because when they asked what they could do to help me, we had something to suggest that actually will be helpful. Emma’s selections focused on Broadway musicals like Wicked and Spring Awakening, while Nate’s had a heavy Motown emphasis, including Marvin Gaye and the Temptations. David put music on for me too—including jazz, which is still his passion, and some classical music that he knows I love.
I called my mom tonight to tell her. She recently moved from the house where I grew up in Newton, Massachusetts to a beautiful retirement community outside of Boston. I didn’t want to worry her, but there’s no way I can go through this without telling her. She asked me what she can do to help, and I asked her to email me. She said she’ll send me a Blue Mountain card every day. I love those e-cards, with their pictures and music.
The brain surgery part is daunting. I've gotten used to my brain the way it is. I'm afraid I won't be me anymore.
Love
Laura
____________________
From: Laura
Sent: Saturday, March 10, 2007 6:43 AM
To: Jennifer
Subject: Saturday
Dearest Jen,
Thank you so much for your daily notes; I can't tell you how much I enjoy reading them. I’m so glad you kept the maternity clothes from your last pregnancy. I bet you look great in your new Pashmina. I've never seen a Pashmina in real life—only on one episode of Friends, when Jennifer Aniston goes out on a shopping spree.
I've been in a flurry of activity since I last wrote. Wednesday I saw the neurosurgeon, Mark, to plan the Omaya. He explained how he was going to neurosurgically insert the Omaya catheter into my brain, so they can deliver chemo directly into the cerebrospinal fluid (CSF), which is the fluid around the brain, around the spinal cord, and in several little water-balloon-like structures in the brain called “ventricles.” Mark is a fabulous surgeon and a likeable guy, quiet with a warm sense of humor, although I told him I preferred our relationship when it was limited to my reading films about the hardware he's putting in other people! He says they used to do about 50 Omayas a year at Memorial, but now they do about 20. He's done a lot of them, and knows what he's doing.
There were two moments in the visit that I didn't like. The first was when he told me how they have to drill a hole in the skull and put the Omaya through the hole and through brain tissue until the tip reaches one of the ventricles. In describing the procedure, he showed me a picture of a brain with a catheter in it. I had never quite realized how far the ventricles are from the surface of the brain!
The second part of the visit that I didn't like was when he told me the Omaya will be there forever. I hadn't realized that. It makes me feel like my life is divided into my world before this Monday (pre-Omaya) and my world after this Monday (post-Omaya). They also have to do this under general anesthesia. So the brain surgery part is intimidating. You know how in your whole life, when people ask you to do something hard, you always think to yourself, "Well, at least it's not brain surgery!" Well, now it IS brain surgery, so what am I supposed to say—maybe, "It isn't rocket science"?
When the neurosurgeon left the room I asked his nurse who's been at Memorial for 36 years if it was OK to cry for a minute and she said it was. She told me that when she used to be a floor nurse, she would tell the patients they were allowed to cry for 20 minutes a day. Apparently there are no restrictions on the time of day you can cry, and you're able to do it all at once or break it into smaller sessions, eg 2 crying sessions of 10 minutes each, or 4 crying sessions of 5 minutes each, or even 10 crying sessions of 2 minutes each. I took her card and her number. That advice may come in handy.
Wednesday night I dragged David to a seminar run by Social Work on how to tell your kids that you have cancer. I wish you had been there to give me the child psychologist’s perspective on the seminar. We met in a small conference room in the hospital. There are three big windows that look out on the Rockefeller campus across the street, but the curtains were drawn. Usually the room is arranged formally, with all the chairs lined up in rows facing the podium in front. For this seminar, it was more casual, with the chairs in a little circle.
David was on my left, and my friend Maureen was on my right. Maureen is a doctor here—last year, when her daughter Julie was 10, Maureen was diagnosed with endometrial cancer, and had surgery, radiation, and chemotherapy. She lost her hair with the chemo, and it’s coming back even a more flaming red than it was before. Maureen is heroic and blunt—the cancer was no match for her. She’s seen it all, tells it like it is, and is fearless—a terrific ally to have in your corner.
The seminar began by us going around the circle and all the participants introducing themselves and telling why they were there. The people at the seminar were a bizarre mix. The first woman on David's left was an inpatient wearing her hospital gown and pushing her IV pole, and she seemed disturbed. She has cancer widely spread throughout her body, but they aren’t sure where it began. Her kids are grown up but she has a 5-year-old granddaughter in her care. She would not stop talking. The social worker finally had to interrupt after she had spent ten minutes on an intensive discussion of every symptom and test she had that led up to her diagnosis of cancer.
On her left was a couple, a man and his extremely pregnant wife, and she was crying hysterically from the moment they walked into the room. I thought she must have something terrible. Turns out her father has cancer, and what they're worried about is, how do they tell their 2-year-old daughter that Grampa is sick? I'm sorry, let's not compete over whose problem is worse, but telling the two-year-old that Grampa is sick just isn’t on the same page as telling your teenage kids that you have cancer. Afterwards, Maureen told me, "I know how they should tell their two-year-old. Say 'Grampa's sick,' and then turn on Blue's Clues, and she'll be fine."
The third couple in the group was a husband and wife in their late 30s or early 40s. The mom, who is fine, lost her mother to cancer at a young age, and hadn't been given complete information. The dad has had adrenocortical carcinoma for three years, very aggressive and not treatable by chemo. He has had multiple recurrences, all treated surgically, so he has had to disappear from home for months at a time. Apparently they never told their son, Billy, that Dad has cancer; when Dad needs surgery, he just disappears in the hospital for a month or two, and they tell the son that it's orthopedic surgery due to a skiing accident Dad had years ago.
Now Billy is 7, and the mother really wants to tell the kid, but the father refuses. In the session, the father kept saying, “Nobody believes that I have cancer because I look so good!” It’s true he looked pretty good—since he's never had chemo he still has his hair, etc.—but facts are facts, and he does have cancer. Finally the wife told her husband quietly, “I think you don’t want to tell him because you can’t admit to yourself that you have cancer. Maybe you figure that if you don’t tell Billy, it isn’t real. Well, it’s real, and he deserves to know, just like I deserved to know when my mom had cancer but I wasn’t given the chance.” Her husband blinked at her, speechless. When he finally tells Billy, I bet the truth will hit them both pretty hard.
The next person was a man about our age whose wife has terminal pancreatic cancer. I gather the wife goes in and out of consciousness, and he doesn't know what or how to tell their four-year-old daughter. She had drawn a picture for her mother, a crayon drawing of the family, but her mother could not recognize what it was. He brought in the picture to show us, holding it with the tenderness that he obviously feels for his wife and daughter. He looked lost and afraid; he clearly loved his daughter very much, but did not know how to help her.
David and I went last. I said I have lymphoma and about to have brain surgery and start chemo, and we are trying to figure out how to tell our teenage kids. He just said, “I’m David, and I’m Laura’s husband.” David is a private person, especially with people he doesn’t know. I knew that sharing the intimate details of his personal life with strangers at a seminar wasn’t his style; he was there for me.
The social worker who ran the meeting was named Tara, which made me think of Gone with the Wind. She was young—maybe in her mid thirties—with short dark hair and sparkly eyes. She told us that she had been working with cancer patients and their families for ten years, and that we would tailor the discussion toward the issues confronting the people in the seminar.
After the introductions, Tara gave us a bunch of "How to Tell Your Kids You Have Cancer" literature. Some of it was geared towards very young kids, which won’t work for Nate at age 17 and Emma at age 14. For example, they had an interactive workbook with a colorful cover and outlines of a female body, so your kids can draw where Mommy’s cancer is; there was also a “his” version with a male body to use if they want to draw Daddy’s cancer. We had the oldest kids in the room, and we were the only ones who were there before cancer treatment started—everyone else had been weaving elaborate webs of deception for months or years.
“Be honest, but don’t overload the kids with information,” Tara explained with a faint southern drawl. “You want to answer their questions, and make it clear that throughout all this, you’re still their parents, and you’ll take care of them.” She emphasized the importance of having time together as a family. In the cab on the way home, David and I talked about how lucky we are to be on the same page about how and what to tell the kids, but we’ve been on the same page for most of the 31 years we’ve known each other. We're planning to tell the kids tomorrow. I wish I didn't have to rock their world. But it would rock their world more if I'm not around, and I have to do this chemo to stick around, and I'm going to do whatever it takes.
Wednesday I had pre-admission tests, including an echocardiogram and an EKG to make sure my heart’s OK. Thursday I went to the dentist for a pre-chemo cleaning of my teeth. Unfortunately they found two cavities, so I had to have them filled. I'm trying to seal up all potential portals of infection—I feel like I'm drawing up the drawbridges of some ancient castle.
Maureen had told me about the wig store on the West Side that she used when she had chemo, and she met me there Thursday afternoon. When I entered the store, a gay cross-dressing hair stylist named J.T., who has won Emmies for hair design, put me in a little room. I was wearing a green skirt, a sweater, and my Ugg boots. My hair is even longer than the last time you saw me, about five inches below my shoulders, curly brown with more flecks of gray than you remember, and kind of wild. J.T. took one look at me and said, "You're a low maintenance kind of gal, huh?" I laughed and asked, "Isn't it enough that I have cancer and need chemo and now you're dissing my hair?"
I tried on a few brunette wigs, and the two I liked best were long—one curly and one straight. I told J.T. I wanted to try a blonde wig because it was my chance to see if blondes have more fun. He said, "Honey, I've been blonde, and trust me, they DON'T." J.T. has named all the wigs—the curly one was Chelsea, named for Chelsea Clinton, and the straight one was Jennifer (maybe for Jennifer Garner?) and actually looks more like your hair than mine. I gather I'll lose my hair about a month after the chemo starts. Then I go back to the wig place, they cut off the rest of my hair, and I go home wearing one of the wigs.
Yesterday, I went on a “field trip” to see our new suite of offices with our office assistant, Lea. The building has been there awhile, but they just finished construction on our suite, and nobody has moved in yet. I had heard the building was a dump, with no security guard. Apparently there was a report of a flasher in the stairway two weeks ago, and when I told one of the administrators, she said, "Great, now you guys will have entertainment." I’ve since heard that the woman who saw the flasher “wasn’t sure he was flashing.” How can you be uncertain about that? It seems to me that if you see a guy in the stairway with his trousers unzipped, there are two options: either he’s flashing or he’s peeing, and neither is something you want a guy to do in your stairway.
Anyway, the suite was beautiful—lots of light, big central space with offices all around, plenty of computers, a small kitchen area, two bathrooms, and a high-tech conference room. Best of all—the office they have planned for me has real windows! It is so sunny compared to our old suite, and much more spacious. I thought I'd never go there, but now I think I will. It will be a beautiful, quiet place to write.
Today Nate takes his SATs—I hope so much for his sake that they go OK. Tomorrow David and I tell the kids, and Monday I get admitted for the neurosurgery. If all goes well, I come home on Tuesday night, rest Wednesday, and have my first chemo on Thurs 3/15.
Got to go—Nate got up and we're going to have the pre-SAT breakfast!
Keep writing—I love your letters.
Love
Laura
____________________
From: Laura
Sent: Sunday, March 11, 2007 11:29 PM
To: Jennifer
Subject: Telling the kids
Hi Jen. Remember the time a couple of years ago, when you cut back on your office hours to make your child psych practice part-time, four days a week, after Sophie was born? You told me then that you thought you had found the right balance, and I told you how few women ever get to say that. I think it’s great that you’re thinking of cutting back on work from four to three days a week after the new baby. This balance thing is a moving target. As soon as you get it right, something in life shifts, like a new baby, or aging parents, or moving to a new city, or an illness, and you have to go with it. I read in an article that people are calling it “work-life fit” instead of “work-life balance” these days, because we now recognize that balance is generally unattainable.
We actually told the kids yesterday, rather than today as we had planned. Nate felt good about his SATs, and we were all together. I was in the bedroom with David and I told him that it felt like the right time to tell them, and that letting them know today will give them a little more time to deal with it before the surgery. It would also let them see me go to bed and wake up at home in the morning, a little bit of normal before Armageddon. David agreed.
After dinner we were all sitting in the family room. You wouldn’t recognize the kids, Jen—they’ve gotten so big! Nate is taller than I am, with sandy hair that always looks a little tousled, an athletic build, and those green eyes he got from David. Emma is petite, about 5’2”, and incredibly chic; her eyes are still that combination of green and blue, half David’s and half mine (all hers). She’s wearing her brown hair shorter now, in wisps around her face, and layers her clothes. I love how she wears jewelry—she’ll have multiple necklaces, all different, but they look great together, and she prefers wearing a different earring in each ear (“I don’t like symmetry,” she explains). I sat on the couch, with Nate on my left and Emma on my right, holding both of their hands. David sat in a chair right next to us. I told them that I have lymphoma, a type of cancer, and that it's in my lymph nodes, bone marrow, spinal cord, and the fluid around my brain.
I explained that I need six months of chemotherapy, which is strong medicine to kill the cancer cells. I said that I was going to get chemo at least every two weeks, and for every other one I have to get admitted to the hospital for a few days. I told them that the chemo will make me look sick because I’ll lose my hair but that just means the chemo is working. I assured them that cancer is not contagious, that they can't catch it, that they didn't give it to me, that it's nobody's fault, these things just happen. I said that they could talk to anyone they liked about it, that it was no secret, and that I had gotten names for each of them of a psychiatrist they could talk to if they wanted. I told them that we were still their parents, that we would take care of them, and that David is the best dad in the world.
I told them that some people with cancer are cured, some get better, some stay the same, some get sicker, and some die. I told them that my hospital and my doctors were the best on the planet, that I was going to do what the doctors told me, and that I would do everything in my power to be in the group that gets better, and that they know how stubborn I can be! I told them that I needed to have a tube in my chest and one in my head for the chemo, and that I was getting admitted to the hospital on Monday for one night to get the tube in my head. I reminded them that their Aunt Laura survived cancer, and so did their Grandma. And I repeated what I said to my beautiful sister-in-law when she was diagnosed with cancer: it sucks but we'll get through it. She did, and so will we.
David didn’t say much during the whole exchange, but he was there, quietly lending support for all of us. His response made me think of our wedding in his parents’ house on Long Island. It was time for each of us to have a sip of red wine. Even though we had known each other for six years and lived together for two, I was shaking so hard that I could hardly hold the glass. He reached up and steadied my hands for me, so I could have a drink without spilling wine on my dress or dropping the glass. He has always been there, quietly strong. We’re going to need that now more than ever.
Later that night, David and I spoke to each of them separately. Emma wanted details, including a full explanation, complete with diagrams, of where the lymphoma was, where all the tubes were going to be, how many chemos I needed, and what the treatments would involve. Nate just got pale and serious, held my hand, and said, “I love you, Mom.”
The kids have always had their own distinct ways of processing information. I remember a day more than a decade ago when we passed a dead bird on the street while we were walking to school. Emma asked questions: “What is that? Is that a dead bird? Why did the bird die?” Nate became silent and asked Emma to please stop talking about it. Emma deals with her fears by verbalizing them and seeking clarification, while Nate prefers to receive information only on a “need to know” basis. After we spoke to the kids, Emma went into Nate’s room and they talked in private. David and I thought that was a good sign that the kids will help each other through this.
On Sunday we looked at some college application materials with Nate, and I took Emma out to tea. After we got home, Emma and Nate spent most of the rest of the day downloading iTunes on my computer to put on my iPod. David had the brilliant idea to get me an iPod and have the kids put songs on it so I can listen to music while I’m getting chemo. It’s great because when they asked what they could do to help me, we had something to suggest that actually will be helpful. Emma’s selections focused on Broadway musicals like Wicked and Spring Awakening, while Nate’s had a heavy Motown emphasis, including Marvin Gaye and the Temptations. David put music on for me too—including jazz, which is still his passion, and some classical music that he knows I love.
I called my mom tonight to tell her. She recently moved from the house where I grew up in Newton, Massachusetts to a beautiful retirement community outside of Boston. I didn’t want to worry her, but there’s no way I can go through this without telling her. She asked me what she can do to help, and I asked her to email me. She said she’ll send me a Blue Mountain card every day. I love those e-cards, with their pictures and music.
The brain surgery part is daunting. I've gotten used to my brain the way it is. I'm afraid I won't be me anymore.
Love
Laura
Chapter 3: Treatment Begins
Keep your sense of humor. Discover your inner Zen.
Bring your own anesthesia.
____________________
From: Laura
Sent: Monday, March 12, 2007 11:04 PM
To: Jennifer
Subject: Brain surgery
Hi Jen. I survived brain surgery! The neurosurgeon promised he didn’t go anywhere near my sense of humor.
Love
Laura
____________________
From: Emma
Sent: Tuesday, March 13, 2007 8:14 AM
To: Mom
Subject: For you in the hospital
Guess what!
I love you!
Guess what else!
I couldn't think of anything else.
I love you!
Love
Emma
____________________
From: Laura
Sent: Wednesday, March 14, 2007 11:04 PM
To: Jennifer
Subject: Stories
Hi Jen. Here's a story for you. As I was getting ready to go to the OR for the Omaya, they told me I had to take off my underpants. Have you ever seen hospital-issued one-size-fits-none underpants? They are made of such a fine mesh that when you put them on a human body, they are actually clear! The nurse wouldn't give me the clear panties unless I was menstruating, so I looked the nurse in the eye and said I had my period, a lie I haven’t told since I wanted to get out of junior high gym. Nothing says "vulnerable" like losing your skivvies. I told the nurse that if the doctor had to look in my underwear to find where to put the Omaya, he wasn't half the neurosurgeon I thought he was. The nurse looked puzzled; I don't think the neurosurgery patients here tell a lot of jokes.
The surgery part was bizarre. Completely awake, I walked down the hall with the escort guy when it was time for my brain surgery. I had to remove my glasses—more vulnerability, especially if you’re almost legally blind without them. David walked with us at first, but when we got to the door of the operating room area, he had to turn back. I went into the OR, which was full of shiny instruments, harsh overhead lights, and “the wall of knowledge”—a huge computer screen to provide continuous updates of the patient’s pulse, temperature, blood pressure, oxygenation, and other parameters—and I realized that soon it would be my information up there. I had to climb onto the table and lie down. The anesthesiologist gave me good drugs that put me to sleep. The next thing I remember is waking up in my room after the surgery was done, with a bad headache and an even worse hair day—they’d shaved almost a quarter of my hair.
Did you know that an iPod is a great cancer coping strategy? I have 370 songs on it, courtesy of Emma, Nate, and David. Waiting for and recovering from brain surgery are a whole lot less scary when you’ve got headphones in and you’re listening to Ben E. King singing “Stand By Me.”
Love
Laura
____________________
From: Laura
Sent: Thursday, March 15, 2007 10:43 PM
To: Jennifer
Subject: Where’s the Zen?
Hi Jen—You are my most faithful correspondent!
After my first inpatient experience, what I want to know is, how am I going to find the Zen to get through this treatment? When I was first diagnosed, David and I decided that we needed to look deep inside ourselves and find some inner Zen and patience, because being a patient involves a lot of waiting. If I fight everything every step of the way, it will zap all of my energy and I won't have any left to use to fight the lymphoma.
And yet in the hospital, when I had to explain to a nurse who looked 12 years old at 3 am how to diagnose an infiltrated IV ("See, the left arm is now twice as big as the right, and my watch is making a huge dent in my arm, and you can see the indentation in my left ring finger, which looks like a sausage now, from where my wedding rings used to be before I took them off so you wouldn't have to cut them off in the morning"), or wait an additional three hours after the neurosurgeon told me I could go home while somebody fills out pointless paperwork, I couldn't hold onto the Zen even for 24 hours. But I need to find that Zen. I can't waste energy on stupid stuff, because I need to save it for what counts. A patient told me that every time I go to the hospital I should pretend I’m going to the airport, so I expect a long wait. That way, I’ll be pleasantly surprised if I don’t wait rather than disappointed if I do. I’ll try it.
After the IV infiltrated during my admission, they were going to stick me again because I needed one more dose of IV antibiotics, and I asked the 12-year-old nurse if she could please just use the Mediport in my chest. She said she wasn't sure, and would have to check with the nursing supervisor. I told her that the Interventional Radiology (IR) doc who put in the port said they could use it during this admission and so did the neurosurgeon, but she insisted that she could only do it if the nursing supervisor blessed it. I emailed the IR docs, my neurosurgeon, and my lymphoma doc to ask if they would bless using the port, and if so, could they let the nurses on 7 know? Miracle of miracles, the nurse came back and said they could use the port!
Innocently, I had always thought that once a port is in, that getting injected through the port would feel the same as injecting IV tubing after the IV is already in place—ie, painless. Unfortunately, the port is under a tiny layer of skin which has lots of nerve endings. The term "access the port" is a euphemism for “I’m going to take a dagger and stab you in the heart.” No local anesthesia of any kind—no injection, no cream, no freezing spray, nothing. It made me appreciate how much pain patients go through with the procedures we inflict on them. And then the nurse bragged about how she was the best in her nursing school class at accessing the port! For every patient to whom I ever said that the injection of anesthetic was more painful than the needle stick for the procedure, I am paying my penance to the universe.
And yet, during the same admission, I experienced a precious act of kindness. The morning after the Omaya placement, a nurses’ aide asked if I’d like her help washing up, and I gratefully said yes. I got undressed and sat on a little plastic chair. She gently and respectfully assisted me with the hand-held nozzle that controlled the wonderful flow of hot water while keeping my post-op head dry. It’s pretty intimate and potentially awkward to bathe in front of a stranger, but she made it so simple. This woman, a non-native speaker of the English language without much formal education, was everything you could want in a caregiver. I wish I could triple her salary.
Today, at home, the part of my hair that wasn’t shaved was all tangled in knots that I didn’t see how I could fix, especially since I can’t take a real shower for a few days because of the neurosurgery. Carmen, our wonderful nanny from Jamaica who has been taking care of the kids for thirteen years, was there. I told you the story about how we got Carmen, didn’t I? We found Carmen through friends who had hired her temporarily when their nanny was on vacation; she was their nanny’s cousin. When we interviewed Carmen, I felt an instant connection. We hired her on the spot, and she’s been with us since Emma was 18 months old and Nate was three. She’s part of our family—great with the kids. I love to talk to her when I get home and have her tell me stories about what the kids did during the day.
When I got home from the neurosurgery admission, Carmen and I were the only ones there; the kids were still at school. I asked Carmen to help me cut off some of the tangled hair before the kids got home. We went into the bedroom and she cut a few snips. Clumps of hair fell like parts of a bird’s nest on the bed. Afterwards, I saw that even a “combover” doesn’t cover the shaved part of my head, which looks like Frankenstein: at the site of the Omaya, I have staples, bruising, and a big bump. It’s a little scary even for me; the kids would not like it. As Carmen was finishing up, we heard the front door slam; Nate was home. I quickly searched my closet, put on a Yankee’s cap, and went to kiss him hello while Carmen threw away the evidence. I suppose eventually the kids will have to see my head, but not now, not yet.
Today, I was scheduled to get my first intrathecal chemo injected into the Omaya and then my first IV R-CHOP. After experiencing the pain from having the Mediport accessed, I decided I would bring my own anesthesia. I brought a bottle of Gebauer’s Ethyl Chloride spray, a freezing spray that numbs instantly. As a doctor, I had been using Ethyl Chloride spray for years to numb the breast during pre-operative needle localizations, a procedure in which we put a wire in the breast to guide a surgeon to a breast abnormality that can’t be felt. I also brought a tube of Emla cream, another medication that numbs the skin but takes half an hour to work.
When I went to the lymphoma service and they described how they were going to stick the Omaya, I asked if they used anesthesia. To give an intrathecal injection, they need to put a needle into the Omaya; since the part they inject is sewn under your scalp, you can feel it. They told me that this area "cannot be numbed." I pulled out the bottle of Ethyl Chloride spray and said, "Actually, it can!" I explained that we use this spray in Mammo for needle locs and that it really helps ease the pain. I asked if they could please use it for me, and they did. After the spray, my oncologist and another very experienced doc dug around my head with a needle for about 10-15 minutes and couldn’t find the Omaya, so they gave up. If I hadn’t had the spray, it would have been torture.
I have to go back Tuesday for them to try again; I’ve invited the neurosurgeon to join us, so he can show them where to go (I’d like to tell them where to go!), and he has agreed to come. I think part of the problem is that the neurosurgeons put the Omayas in but the oncologists inject them. Since neurosurgery only puts in about 20 Omayas a year, and there are far more than 20 oncologists, most oncologists don’t have much experience with intrathecal injections. When the oncologist recommended that I bring the spray on Tuesday (which I will do—I’m bringing it everywhere from now on), I suggested that maybe it would be good to get some spray for the clinic, so that all patients would benefit! Patients rarely come armed with their own anesthetic spray. I hope you never get cancer, but if you ever do, don’t leave home without the spray.
I had a blood test and then went to the outpatient chemo floor to get my first R-CHOP. Waiting for chemo felt like being in line for a table at a crowded restaurant—they asked for my cell number, so they could call me when the chemo was ready. They wait for the blood test results before they “mix the chemo,” which then takes an additional two hours after the blood test result is ready. They want to make sure that your blood counts are normal before they give you chemo. While I was waiting, I got to have breakfast with
David. Finally, they called around 12:30, and we got started.
I went up to the 4th floor, Suite 7. It’s outpatient chemo, but it looks like an inpatient floor. The room was private, with a bed, two chairs, a TV, and a private bathroom. I had brought a fuzzy turquoise blanket from home. My nurse was named Lois, and she was very nice. She used the spray on my port before she "accessed it" and she laughed at my jokes even though I doubt that they were funny. They run in the first chemo slowly, over 6-8 hours, so they can monitor for an allergic reaction. They started with the Benadryl (anti-histamine), Dexamethasone (an injectable steroid), and a slew of anti-nausea pre-meds in preparation for the Rituximab (monoclonal antibody), followed by the cytoxan with a lot of fluid, the doxorubicin (which is bright red and will make me pee pink!), and the vincristine.
The problem with most chemo is that it works by killing rapidly dividing cells. Cancer cells divide rapidly, so chemo can kill cancer, but unfortunately some normal cells also divide rapidly, like the cells that make hair, causing hair loss; and the cells that become blood cells, including red blood cells, so you get anemic; platelets, so you have a tendency to bleed; and white blood cells, so you’re prone to infection. Giving chemo is the ultimate game of chicken—you explode a big bomb in the patient and wait to see who dies first, the cancer or the patient.
The complications of chemo that can kill you are mostly related to the innocent bystanders like white blood cells who get hit in the cross-fire. Now there are medicines that are “growth factors” that help some “good cells,” like blood cells, recover faster, so a cancer patient is vulnerable for a shorter period of time; this has greatly helped survival. Hopefully in the future we’ll have more “targeted therapies”—medicines that will specifically attack the cancer cells, while leaving the innocent bystanders alone. Unfortunately, now we usually still explode the bomb.
David stayed with me the whole day. He was in a chair, reading. He loves to read Big Fat Books—I call them BFBs—it started with that multi-volume biography of Lyndon Johnson by Robert Caro a few years back and has continued since then—I worry that he will fall asleep with one of those humungous tomes and will suffer a BFB injury! Some friends from the hospital came to see me, including Cindy, our Chief Technologist in Breast Imaging, whom I’ve known since we both started working at Memorial 17 years ago.
Nate visited me after school. He was on his way to Pediatrics in my hospital to interview for a volunteer position dealing with children who have cancer. Working in Peds was Nate’s idea—he loves to work with children. I think it’s a great idea for that reason and also because it might help him cope with my illness. He likes to deal with a difficult experience by turning it into a way he can help other people. I hope it won't be too tough on him emotionally; some of those kids with cancer are really sick.
I did fine with the chemo—no reactions or anything—and was done earlier than expected, 6:30 instead of 8:30 pm. So now we're home, and I can rest. If I feel up to it I may go to the office tomorrow. Apparently I won't get to “nadir,” which is the lowest point in the white blood cell count, for about a week; that’s when I’ll be particularly susceptible to infection. They say that the effect of chemo is cumulative; it’s likely that I’ll feel more exhausted after more chemos. The doctors think I’ll need a total of 18 treatments (six outpatient IV R-CHOPS for the nodes and marrow, six outpatient intrathecal methotrexates for the fluid around my brain, and six inpatient IV methotrexates for the spinal cord disease), so now I just have 17 left.
Keep writing. It makes sense that you’re not accepting new patients for now—that will make it easier for you to make the switch from four to three days a week when the time comes. And I agree that having it all may not be what it's cracked up to be. As the great comedian Steven Wright says, "You can't have everything—where would you put it?"
Love
Laura
____________________
From: Laura
Sent: Friday, March 16, 2007 8:56 AM
To: Jennifer
Subject: Home
Today I'm home resting. Emma has a snow day so she’s home too. We’re listening to the CD of a Broadway musical we’re seeing next month called Spring Awakening. We're going to make some tea and have a cozy day together.
Love
Laura
____________________
From: Laura
Sent: Saturday, March 17, 2007 4:14 AM
To: Jennifer
Subject: Awake
Hi Jen. I have a feeling there may be quite a few 3-5 am updates, especially when I'm on prednisone, the oral steroid I have to take for about five days after every R-CHOP (I hear prednisone is a good medicine to take when you need to clean your apartment). The prednisone seems to wake me up from 3:00 to 5:00 am even though I'm on enough sleep meds to kill a pretty large race horse. I guess it will help me get a jump start on my book.
I’m going to listen to music and try to get back to sleep. I’m in the mood to hear Jacqueline du Pre play her rich and passionate performance of Elgar’s cello concerto. I remember the stories you told me about Jacqueline du Pre: how she used to play duets with her husband, Daniel Barenboim, who was a pianist and conductor; how she developed multiple sclerosis, making her unable to play the cello; and how the rest of her life after that was very rough. Knowing about her illness, I found it sad to read the back cover of the CD, which reports an interview her husband gave before she got sick, when he said that the best thing about their relationship was that “our life and work are one.”
Love
Laura
____________________
From: Laura
Sent: Saturday, March 17, 2007 11:20 AM
To: Radiology staff
Subject: Thank you
Dear Radiology colleagues:
Thank you for the beautiful gift basket, and the note that accompanied it. As many of you know, I have an aggressive lymphoma and need six months of intensive chemo. If all goes well, I'll be done with the chemo by September.
After four years as an intern/resident at MSKCC and 17 years on faculty here, I finally get to see what it's like to be a cancer patient. You know that song, "I'd rather be a hammer than a nail"? Well, yes I would! Anyway, I'm writing a book about it. You know I love to write.
I appreciate your kind wishes and (if you're up for it) your prayers. My wonderful family and friends are helping me get through this. Thank you.
Love
Laura
____________________
From: Laura
Sent: Sunday, March 18, 2007 9:07 AM
To: Jennifer
Subject: Shower
Hi Jen. Guess what? Yesterday I got to take my first real shower since I had neurosurgery! My being unable to shower for five days was a true test of my husband's love, and I'm delighted that he passed.
The neurosurgeon told me to use Baby Shampoo, so David went out to get it for me. He came back with a bottle of Johnson's baby shampoo with a Spanish label that said something about "mata" on the front. In Spanish, matar means to kill, so I told my husband, I send you out and you come back with death shampoo? I told the kids if they heard any explosions from the bathroom they should come in with a hose. So my poor darling husband went out again (I was really just kidding) and came back with two bottles of Johnson’s Baby Shampoo, both labeled in English (one had a Detangling Formula). Neither mentioned death in any language anywhere on the label I was surprised they had Baby Detangling Shampoo; I never thought babies got tangles—maybe they don't, which is why there were so many bottles left in the store!
What a shower it was. Feeling the warm water cascading over my head, I closed my eyes and recalled the first time I went snorkeling in the balmy turquoise waters of the Caribbean.
Tonight we're going out for a surprise party for my husband's 50th birthday. The last time I tried to give him a surprise birthday party was when we were in college. I had bought him a cake and lit the candles in the dorm room of his friend, an Egyptian named Sammy. Trying to convince David to come to his room, Sammy said, "David, I have to talk to you in my room!" and David asked, "Why not tell me here?" and refused to come until Sammy spilled the beans! The candles were all burned down into wax on the cake by the time they showed up. I had sworn never again. But that was about 30 years ago, and I figured that the statute of limitations should have expired by now.
Love
Laura
Bring your own anesthesia.
____________________
From: Laura
Sent: Monday, March 12, 2007 11:04 PM
To: Jennifer
Subject: Brain surgery
Hi Jen. I survived brain surgery! The neurosurgeon promised he didn’t go anywhere near my sense of humor.
Love
Laura
____________________
From: Emma
Sent: Tuesday, March 13, 2007 8:14 AM
To: Mom
Subject: For you in the hospital
Guess what!
I love you!
Guess what else!
I couldn't think of anything else.
I love you!
Love
Emma
____________________
From: Laura
Sent: Wednesday, March 14, 2007 11:04 PM
To: Jennifer
Subject: Stories
Hi Jen. Here's a story for you. As I was getting ready to go to the OR for the Omaya, they told me I had to take off my underpants. Have you ever seen hospital-issued one-size-fits-none underpants? They are made of such a fine mesh that when you put them on a human body, they are actually clear! The nurse wouldn't give me the clear panties unless I was menstruating, so I looked the nurse in the eye and said I had my period, a lie I haven’t told since I wanted to get out of junior high gym. Nothing says "vulnerable" like losing your skivvies. I told the nurse that if the doctor had to look in my underwear to find where to put the Omaya, he wasn't half the neurosurgeon I thought he was. The nurse looked puzzled; I don't think the neurosurgery patients here tell a lot of jokes.
The surgery part was bizarre. Completely awake, I walked down the hall with the escort guy when it was time for my brain surgery. I had to remove my glasses—more vulnerability, especially if you’re almost legally blind without them. David walked with us at first, but when we got to the door of the operating room area, he had to turn back. I went into the OR, which was full of shiny instruments, harsh overhead lights, and “the wall of knowledge”—a huge computer screen to provide continuous updates of the patient’s pulse, temperature, blood pressure, oxygenation, and other parameters—and I realized that soon it would be my information up there. I had to climb onto the table and lie down. The anesthesiologist gave me good drugs that put me to sleep. The next thing I remember is waking up in my room after the surgery was done, with a bad headache and an even worse hair day—they’d shaved almost a quarter of my hair.
Did you know that an iPod is a great cancer coping strategy? I have 370 songs on it, courtesy of Emma, Nate, and David. Waiting for and recovering from brain surgery are a whole lot less scary when you’ve got headphones in and you’re listening to Ben E. King singing “Stand By Me.”
Love
Laura
____________________
From: Laura
Sent: Thursday, March 15, 2007 10:43 PM
To: Jennifer
Subject: Where’s the Zen?
Hi Jen—You are my most faithful correspondent!
After my first inpatient experience, what I want to know is, how am I going to find the Zen to get through this treatment? When I was first diagnosed, David and I decided that we needed to look deep inside ourselves and find some inner Zen and patience, because being a patient involves a lot of waiting. If I fight everything every step of the way, it will zap all of my energy and I won't have any left to use to fight the lymphoma.
And yet in the hospital, when I had to explain to a nurse who looked 12 years old at 3 am how to diagnose an infiltrated IV ("See, the left arm is now twice as big as the right, and my watch is making a huge dent in my arm, and you can see the indentation in my left ring finger, which looks like a sausage now, from where my wedding rings used to be before I took them off so you wouldn't have to cut them off in the morning"), or wait an additional three hours after the neurosurgeon told me I could go home while somebody fills out pointless paperwork, I couldn't hold onto the Zen even for 24 hours. But I need to find that Zen. I can't waste energy on stupid stuff, because I need to save it for what counts. A patient told me that every time I go to the hospital I should pretend I’m going to the airport, so I expect a long wait. That way, I’ll be pleasantly surprised if I don’t wait rather than disappointed if I do. I’ll try it.
After the IV infiltrated during my admission, they were going to stick me again because I needed one more dose of IV antibiotics, and I asked the 12-year-old nurse if she could please just use the Mediport in my chest. She said she wasn't sure, and would have to check with the nursing supervisor. I told her that the Interventional Radiology (IR) doc who put in the port said they could use it during this admission and so did the neurosurgeon, but she insisted that she could only do it if the nursing supervisor blessed it. I emailed the IR docs, my neurosurgeon, and my lymphoma doc to ask if they would bless using the port, and if so, could they let the nurses on 7 know? Miracle of miracles, the nurse came back and said they could use the port!
Innocently, I had always thought that once a port is in, that getting injected through the port would feel the same as injecting IV tubing after the IV is already in place—ie, painless. Unfortunately, the port is under a tiny layer of skin which has lots of nerve endings. The term "access the port" is a euphemism for “I’m going to take a dagger and stab you in the heart.” No local anesthesia of any kind—no injection, no cream, no freezing spray, nothing. It made me appreciate how much pain patients go through with the procedures we inflict on them. And then the nurse bragged about how she was the best in her nursing school class at accessing the port! For every patient to whom I ever said that the injection of anesthetic was more painful than the needle stick for the procedure, I am paying my penance to the universe.
And yet, during the same admission, I experienced a precious act of kindness. The morning after the Omaya placement, a nurses’ aide asked if I’d like her help washing up, and I gratefully said yes. I got undressed and sat on a little plastic chair. She gently and respectfully assisted me with the hand-held nozzle that controlled the wonderful flow of hot water while keeping my post-op head dry. It’s pretty intimate and potentially awkward to bathe in front of a stranger, but she made it so simple. This woman, a non-native speaker of the English language without much formal education, was everything you could want in a caregiver. I wish I could triple her salary.
Today, at home, the part of my hair that wasn’t shaved was all tangled in knots that I didn’t see how I could fix, especially since I can’t take a real shower for a few days because of the neurosurgery. Carmen, our wonderful nanny from Jamaica who has been taking care of the kids for thirteen years, was there. I told you the story about how we got Carmen, didn’t I? We found Carmen through friends who had hired her temporarily when their nanny was on vacation; she was their nanny’s cousin. When we interviewed Carmen, I felt an instant connection. We hired her on the spot, and she’s been with us since Emma was 18 months old and Nate was three. She’s part of our family—great with the kids. I love to talk to her when I get home and have her tell me stories about what the kids did during the day.
When I got home from the neurosurgery admission, Carmen and I were the only ones there; the kids were still at school. I asked Carmen to help me cut off some of the tangled hair before the kids got home. We went into the bedroom and she cut a few snips. Clumps of hair fell like parts of a bird’s nest on the bed. Afterwards, I saw that even a “combover” doesn’t cover the shaved part of my head, which looks like Frankenstein: at the site of the Omaya, I have staples, bruising, and a big bump. It’s a little scary even for me; the kids would not like it. As Carmen was finishing up, we heard the front door slam; Nate was home. I quickly searched my closet, put on a Yankee’s cap, and went to kiss him hello while Carmen threw away the evidence. I suppose eventually the kids will have to see my head, but not now, not yet.
Today, I was scheduled to get my first intrathecal chemo injected into the Omaya and then my first IV R-CHOP. After experiencing the pain from having the Mediport accessed, I decided I would bring my own anesthesia. I brought a bottle of Gebauer’s Ethyl Chloride spray, a freezing spray that numbs instantly. As a doctor, I had been using Ethyl Chloride spray for years to numb the breast during pre-operative needle localizations, a procedure in which we put a wire in the breast to guide a surgeon to a breast abnormality that can’t be felt. I also brought a tube of Emla cream, another medication that numbs the skin but takes half an hour to work.
When I went to the lymphoma service and they described how they were going to stick the Omaya, I asked if they used anesthesia. To give an intrathecal injection, they need to put a needle into the Omaya; since the part they inject is sewn under your scalp, you can feel it. They told me that this area "cannot be numbed." I pulled out the bottle of Ethyl Chloride spray and said, "Actually, it can!" I explained that we use this spray in Mammo for needle locs and that it really helps ease the pain. I asked if they could please use it for me, and they did. After the spray, my oncologist and another very experienced doc dug around my head with a needle for about 10-15 minutes and couldn’t find the Omaya, so they gave up. If I hadn’t had the spray, it would have been torture.
I have to go back Tuesday for them to try again; I’ve invited the neurosurgeon to join us, so he can show them where to go (I’d like to tell them where to go!), and he has agreed to come. I think part of the problem is that the neurosurgeons put the Omayas in but the oncologists inject them. Since neurosurgery only puts in about 20 Omayas a year, and there are far more than 20 oncologists, most oncologists don’t have much experience with intrathecal injections. When the oncologist recommended that I bring the spray on Tuesday (which I will do—I’m bringing it everywhere from now on), I suggested that maybe it would be good to get some spray for the clinic, so that all patients would benefit! Patients rarely come armed with their own anesthetic spray. I hope you never get cancer, but if you ever do, don’t leave home without the spray.
I had a blood test and then went to the outpatient chemo floor to get my first R-CHOP. Waiting for chemo felt like being in line for a table at a crowded restaurant—they asked for my cell number, so they could call me when the chemo was ready. They wait for the blood test results before they “mix the chemo,” which then takes an additional two hours after the blood test result is ready. They want to make sure that your blood counts are normal before they give you chemo. While I was waiting, I got to have breakfast with
David. Finally, they called around 12:30, and we got started.
I went up to the 4th floor, Suite 7. It’s outpatient chemo, but it looks like an inpatient floor. The room was private, with a bed, two chairs, a TV, and a private bathroom. I had brought a fuzzy turquoise blanket from home. My nurse was named Lois, and she was very nice. She used the spray on my port before she "accessed it" and she laughed at my jokes even though I doubt that they were funny. They run in the first chemo slowly, over 6-8 hours, so they can monitor for an allergic reaction. They started with the Benadryl (anti-histamine), Dexamethasone (an injectable steroid), and a slew of anti-nausea pre-meds in preparation for the Rituximab (monoclonal antibody), followed by the cytoxan with a lot of fluid, the doxorubicin (which is bright red and will make me pee pink!), and the vincristine.
The problem with most chemo is that it works by killing rapidly dividing cells. Cancer cells divide rapidly, so chemo can kill cancer, but unfortunately some normal cells also divide rapidly, like the cells that make hair, causing hair loss; and the cells that become blood cells, including red blood cells, so you get anemic; platelets, so you have a tendency to bleed; and white blood cells, so you’re prone to infection. Giving chemo is the ultimate game of chicken—you explode a big bomb in the patient and wait to see who dies first, the cancer or the patient.
The complications of chemo that can kill you are mostly related to the innocent bystanders like white blood cells who get hit in the cross-fire. Now there are medicines that are “growth factors” that help some “good cells,” like blood cells, recover faster, so a cancer patient is vulnerable for a shorter period of time; this has greatly helped survival. Hopefully in the future we’ll have more “targeted therapies”—medicines that will specifically attack the cancer cells, while leaving the innocent bystanders alone. Unfortunately, now we usually still explode the bomb.
David stayed with me the whole day. He was in a chair, reading. He loves to read Big Fat Books—I call them BFBs—it started with that multi-volume biography of Lyndon Johnson by Robert Caro a few years back and has continued since then—I worry that he will fall asleep with one of those humungous tomes and will suffer a BFB injury! Some friends from the hospital came to see me, including Cindy, our Chief Technologist in Breast Imaging, whom I’ve known since we both started working at Memorial 17 years ago.
Nate visited me after school. He was on his way to Pediatrics in my hospital to interview for a volunteer position dealing with children who have cancer. Working in Peds was Nate’s idea—he loves to work with children. I think it’s a great idea for that reason and also because it might help him cope with my illness. He likes to deal with a difficult experience by turning it into a way he can help other people. I hope it won't be too tough on him emotionally; some of those kids with cancer are really sick.
I did fine with the chemo—no reactions or anything—and was done earlier than expected, 6:30 instead of 8:30 pm. So now we're home, and I can rest. If I feel up to it I may go to the office tomorrow. Apparently I won't get to “nadir,” which is the lowest point in the white blood cell count, for about a week; that’s when I’ll be particularly susceptible to infection. They say that the effect of chemo is cumulative; it’s likely that I’ll feel more exhausted after more chemos. The doctors think I’ll need a total of 18 treatments (six outpatient IV R-CHOPS for the nodes and marrow, six outpatient intrathecal methotrexates for the fluid around my brain, and six inpatient IV methotrexates for the spinal cord disease), so now I just have 17 left.
Keep writing. It makes sense that you’re not accepting new patients for now—that will make it easier for you to make the switch from four to three days a week when the time comes. And I agree that having it all may not be what it's cracked up to be. As the great comedian Steven Wright says, "You can't have everything—where would you put it?"
Love
Laura
____________________
From: Laura
Sent: Friday, March 16, 2007 8:56 AM
To: Jennifer
Subject: Home
Today I'm home resting. Emma has a snow day so she’s home too. We’re listening to the CD of a Broadway musical we’re seeing next month called Spring Awakening. We're going to make some tea and have a cozy day together.
Love
Laura
____________________
From: Laura
Sent: Saturday, March 17, 2007 4:14 AM
To: Jennifer
Subject: Awake
Hi Jen. I have a feeling there may be quite a few 3-5 am updates, especially when I'm on prednisone, the oral steroid I have to take for about five days after every R-CHOP (I hear prednisone is a good medicine to take when you need to clean your apartment). The prednisone seems to wake me up from 3:00 to 5:00 am even though I'm on enough sleep meds to kill a pretty large race horse. I guess it will help me get a jump start on my book.
I’m going to listen to music and try to get back to sleep. I’m in the mood to hear Jacqueline du Pre play her rich and passionate performance of Elgar’s cello concerto. I remember the stories you told me about Jacqueline du Pre: how she used to play duets with her husband, Daniel Barenboim, who was a pianist and conductor; how she developed multiple sclerosis, making her unable to play the cello; and how the rest of her life after that was very rough. Knowing about her illness, I found it sad to read the back cover of the CD, which reports an interview her husband gave before she got sick, when he said that the best thing about their relationship was that “our life and work are one.”
Love
Laura
____________________
From: Laura
Sent: Saturday, March 17, 2007 11:20 AM
To: Radiology staff
Subject: Thank you
Dear Radiology colleagues:
Thank you for the beautiful gift basket, and the note that accompanied it. As many of you know, I have an aggressive lymphoma and need six months of intensive chemo. If all goes well, I'll be done with the chemo by September.
After four years as an intern/resident at MSKCC and 17 years on faculty here, I finally get to see what it's like to be a cancer patient. You know that song, "I'd rather be a hammer than a nail"? Well, yes I would! Anyway, I'm writing a book about it. You know I love to write.
I appreciate your kind wishes and (if you're up for it) your prayers. My wonderful family and friends are helping me get through this. Thank you.
Love
Laura
____________________
From: Laura
Sent: Sunday, March 18, 2007 9:07 AM
To: Jennifer
Subject: Shower
Hi Jen. Guess what? Yesterday I got to take my first real shower since I had neurosurgery! My being unable to shower for five days was a true test of my husband's love, and I'm delighted that he passed.
The neurosurgeon told me to use Baby Shampoo, so David went out to get it for me. He came back with a bottle of Johnson's baby shampoo with a Spanish label that said something about "mata" on the front. In Spanish, matar means to kill, so I told my husband, I send you out and you come back with death shampoo? I told the kids if they heard any explosions from the bathroom they should come in with a hose. So my poor darling husband went out again (I was really just kidding) and came back with two bottles of Johnson’s Baby Shampoo, both labeled in English (one had a Detangling Formula). Neither mentioned death in any language anywhere on the label I was surprised they had Baby Detangling Shampoo; I never thought babies got tangles—maybe they don't, which is why there were so many bottles left in the store!
What a shower it was. Feeling the warm water cascading over my head, I closed my eyes and recalled the first time I went snorkeling in the balmy turquoise waters of the Caribbean.
Tonight we're going out for a surprise party for my husband's 50th birthday. The last time I tried to give him a surprise birthday party was when we were in college. I had bought him a cake and lit the candles in the dorm room of his friend, an Egyptian named Sammy. Trying to convince David to come to his room, Sammy said, "David, I have to talk to you in my room!" and David asked, "Why not tell me here?" and refused to come until Sammy spilled the beans! The candles were all burned down into wax on the cake by the time they showed up. I had sworn never again. But that was about 30 years ago, and I figured that the statute of limitations should have expired by now.
Love
Laura
Chapter 4: Celebration
It’s not all about the cancer.
____________________
From: Laura
Sent: Monday, March 19, 2007 4:36 AM
To: Jennifer
Subject: David’s birthday party
Hi Jen. Since you're my "gentle reader," let me tell you about David's 50th birthday party last night. (Note the ungodly time on the email; I’m still on the five days of prednisone from the R-CHOP, and it continues to get me up from 3-5 am daily. Maybe I should call my book "The Prednisone Diaries.")
I'd been thinking about throwing a surprise 50th birthday party for David for a long time. A few years ago, we went to a party for our closest friends, the Berkowitzes. Our dear friend Steve Berkowitz turned 50, and his wife Monique (we call her “Q”), threw him a fabulous dinner party that occupied a small floor of a little bistro downtown. Q had invited friends from all times in Steve's life: growing up in Boston, playing in a band, and rising through the record industry in NY. Each of them got up and told moving and funny stories about Steve from his childhood through his adult life. The party inspired me to do something for David’s 50th birthday.
I enlisted Q to help me plan the party. Given everything that was going on, we decided to keep it simple, with just the four of us (me, David, Nate, and Emma) and the four of them (Q, Steve, and their sons, Nick and Ben). Our families have been close for years. Our nanny had befriended their nanny in Carl Schurz Park when Nick and Nate were babies, and the boys bonded right away. I first met Nick when I was pushing Nate, then 18 months old, in his stroller in the park. Nick waved and said, "Hi, Nate!" It was the first time, to my knowledge, that somebody with whom I was unacquainted knew Nate. In that moment, Nick taught me that Nate was someday going to have a full and independent life that did not always include me! Shortly after that, we all met in the park. Q and I became pregnant with our second children at around the same time and became close friends. The eight of us have spent every New Year's Day together for about 15 years, at our place or theirs.
David still loves jazz, and loves to take the kids to jazz clubs. One of his favorite clubs in the city is a funky place called the Jazz Standard, which has great live music and serves dinner. Q and I looked at the schedule of who is playing, and it turns out that this weekend they had a quartet with a pianist named Bill Charlap, who I knew David liked. We decided to do it on Sunday night.
The kids liked the plan, especially the part about keeping it a surprise from David. Nate tried to help me make the reservations, but when he told them it was for a party of eight, they said you can't make reservations for 8 people. So I called back the manager and said, "Listen, I have cancer, and we need to celebrate my husband's 50th birthday on Sunday because after that I'll be hospitalized." And guess what? It turns out that you CAN make reservations for eight people! So cancer is a good news/bad news thing. Yes, you need toxic chemo—but at least now you can get dinner reservations!
I booked us for the 7:30 set and finalized the plans for Steve, Q, and their kids to meet us there. I had casually mentioned to David earlier in the week that maybe we could go out to eat on Sunday for brunch or dinner. He said dinner is better because the kids need to do their homework during the day (I had been counting on him saying that). Emma overheard the conversation. After David left the room, Emma looked at me admiringly. “Mom, if I had a hat, I would take it off to you.”
When Sunday came, David was full speed ahead in superdrive mode to make sure that the kids got their homework done, and he said he wasn't sure we'd have time to go out to dinner. Emma was worried—what if we can't talk Dad into going? But I reassured Emma by reminding her of the line in My Big Fat Greek Wedding where the Greek mom says that the man of the house may be the head, but the woman is the neck, and she can turn the head whichever way she wants.
Here's how it went down. About 5:45 I was alone in the family room and David came in and asked, "Where are we going for dinner?" When I hedged, he began to suggest restaurants, and then he realized I had a plan. His face was apprehensive and his arms were crossed, something he does in the rare moments when he gets upset. He said he wanted me to tell him what's going on, because he can't deal with any more surprises after the shock of my diagnosis. I told him that I'd made a surprise celebration for his 50th birthday, that we had reservations at the Jazz Standard, that Bill Charlap was playing, that the Berkowitzes were going to meet us there, and that there would be cake and presents. David looked puzzled, like he didn’t understand. He asked, "How can I celebrate my birthday and be happy in the middle of all of this?"
I explained it to him. I told him how much fun it had been for all of us to plan this wonderful dinner, how the kids had been bumping into each other for two days trying to keep it a secret. I told him that we can't make the next six months of our lives all about the cancer. That one of the things that will get us through this is to find the moments in our lives that deserve to be celebrated and to celebrate them. That he was having a birthday, and that Emma is going to Paris for her spring break, that Nate survived the SATs, that I finished 1 of my 18 chemos (only 17 left!), and that after 24 years of marriage we’re still together.
We got in the cab, and Nate gave the driver the address. The Berkowitzes met us in the narrow entryway of the jazz club and I said: “Recipe for instant party: add four Berkowitzes, and let the fun begin!” The eight of us went downstairs to the dimly lit foyer. The restaurant had a sprinkling of small tables and booths with an elevated stage in the front, and the walls were covered with signed photographs of jazz giants who had played there in the past. They seated us at a table with a long curvy booth on the left and cushioned chairs on the right, so we could all be comfortable. David and I were in the middle of the table, between the senior Berkowitzes and all the kids.
One of the most wonderful things about the party was how we’re all so close—some of us got up and moved around to different seats, so by the end of the evening, everybody had talked to everybody. It's so rare in relationships among eight people that all of the possible combinations work, but with our two families, they always have. Good food, great music, and then they brought out the chocolate cake that said “Happy 50th Birthday David” that we had pre-ordered with one candle. I decided not to put in 50 candles, remembering the debacle of the waxed cake from David's college days.
I couldn’t resist making a little speech. David is always teasing me about how I tell the long version of the story, never the short version. He likes to tell me the Colin Quinn joke about his girlfriend telling him an interminable story with every possible detail included, and Colin says to her, “Excuse me, but I don’t want to live your life in real time!” I kept my remarks short and sweet. I thanked everyone for coming and said how glad I was that we could all be here for David’s birthday. Then we drank a toast to wish David a happy birthday—the boys did it with Coke, and Emma had a sip of champagne.
At home, after the kids went to bed, David thanked me and said it was "good to have the distraction for the kids." But it's more than that. We live our lives too fast, and don't look around enough. I realized it once when I was dashing through the reef while scuba diving, as if I had to make some deadline. You're in the water and the coral reef is magnificent; you might as well enjoy the view. The good things are not a distraction. They're the point. David has been saying that for years, and I believed him in theory, but didn't really live my life that way. I’m finally getting it. It’s ironic that I’m teaching David the lesson he’s been trying to teach me for three decades.
On another note—I can't believe you and Sophie watched The Devil Wears Prada last night—Emma & I were watching it too! We just got the DVD. We had seen the movie in the theater in Hilton Head this summer—but the problem with seeing it in Hilton Head is that it instills in you the longing to shop in New York, which is tough to do when you're in South Carolina.
Tomorrow I’m going to work, and then Tuesday intrathecal methotrexate. If they can't find the Omaya this time I'm going over to the mammo office so Cindy can do an ultrasound and draw a big arrow on my head.
Love
Laura
____________________
From: Laura
Sent: Tuesday, March 20, 2007 5:29 AM
To: Jennifer
Subject: The Prednisone Diaries
Hi Jen. This may be the last installment of “The Prednisone Diaries" (3-5 am version) for awhile. Today will be my last day of oral prednisone for this cycle. I take it for the first 5 days after the R-CHOP, and today will be day 5. And darn, I had hoped I'd get the whole apartment cleaned while on that steroid rush! Imagine how clean Mark Maguire's apartment must be.
Yesterday was the first day I really went back to work since the surgery. It was a Monday, and on Mondays and Wednesdays I direct the Program for Women Faculty Affairs. I’d love to show you my office. After you go in the front door, there is a kitchen to the immediate right, and past the kitchen is the door to our suite. My office has a desk, bookcases, a round table that can fit three chairs easily, and a window overlooking some trees on the street, my first office window in over 17 years.
I had a bunch of stuff to do in the office, but I took it slow. I had to finalize some details for this Wednesday’s breakfast meeting of Athena, which is our informal group for women faculty. We call this group Athena after the Greek goddess of wisdom and war. In Homer’s Odyssey, Odysseus asks a wise and trusted old man named Mentor to take care of his son Telemachus when Odysseus goes off to fight the Trojan War. It turns out it is actually Athena, a woman and a goddess, disguised as Mentor, who guides Telemachus in the Odyssey. We thought Athena was the perfect name for a group of women faculty who offer each other support and guidance.
Cindy came to see me in the Women’s Office. She brought me a maroon baseball cap that said “Monk,” after the detective with obsessive compulsive disorder (OCD) who is the hero of my favorite TV show. Monk’s OCD makes him a great detective, because he notices everything, but complicates his life because of his many phobias and rituals. Cindy is a cancer survivor, and last year, when she was recovering after surgery, I sent her a collection of Monk DVDs. It seems right that now that I have cancer, she gave me a Monk cap. A few other friends had sent gifts to the office. One of the good things about having cancer is that people are always giving you “cancer presents.” It’s like Christmas in the spring!
I figured out a plan to structure my days for the immediate future. On Mondays and Wednesdays if I’m up to it, I'll go to the Women's Office. The other days, if I’m not getting treated or hospitalized, I’ll go to my Radiology office to do some administrative work or research. I'll aim to leave work around 4 pm, so I can be here when the kids get home from school. Jen, I'm almost 47, my kids are 17 and 14, and yesterday, when they came home from 11th and 9th grade respectively, I got to offer them milk and cookies and ask them about their day at school. Finally!
When I got home yesterday, I talked to Carmen. I asked her how she thought the kids were doing through all of this. She said that it’s hard on them but they’ll be OK. She told me how much time the kids spend with each other at home these days, talking in Nate’s room with the door closed. I was relieved to hear it. How wonderful if they can support each other. Around 4:30, the kids came home; Emma settled down to schoolwork and Nate closed the door in his room to take a nap.
I went to the laptop to write; Carmen gave me a hug and left. The laptop is on the dining table in our living room, which we redecorated since you last saw it. It still has bookcases on most of the walls, the dining table on the near right, and the piano on the left. We got shades to cover most of the glass windows on the far side of the living room, but left bare the glass door that opens onto the terrace. We bought a big Oriental rug. We also replaced the old couch with an oversized sofa that has big stuffed pillows and got two comfy “glider” chairs in muted colors with a hint of turquoise. I love to sit in one of the gliders and read and listen to David playing the piano. Around 6 pm, the kids emerged from their rooms, hungry for dinner.
We ordered dinner from a neighborhood Italian place called Arturo's, one of our family favorites. I called David on his cell to ask what he wanted me to order for him, and he was glad that I was home. We had a family dinner for a change, and then the kids escaped to their homework. That little extra time with the kids when they get home from school and having dinner all together felt like a gift—I usually don’t get home until after seven. Later I told David that for the next few months I would try to get home before the kids whenever possible, and he said that sounded like a good idea.
Today they’re going to make a second attempt to give me intrathecal methotrexate in the Omaya. David asked me what time the appointment was so he could reschedule his day to come with me, but I don’t want to drag him to all my appointments. He has to work, take care of the kids, and handle the logistics of our lives. If I really need him, like I did when I had brain surgery, I won’t hesitate to ask, but if it’s not essential, I’d rather conserve his energy. Cindy offered to come with me and sounded like she meant it, so I think I’ll take her up on it.
The prednisone buzz is fading, and I may go back to sleep for a little while.
More tomorrow.
Love
Laura
____________________
From: Laura
Sent: Tuesday, March 20, 2007 11:14 PM
To: Cindy
Subject: Oh Me Omaya
Hi Cinderella. Just a note to thank you for your starring role in the drama “Oh Me Omaya.” I appreciate your coming with me for the intrathecal injection today. You were exactly the right person to be there for me when I needed you, and I will never forget it.
Love
Laura
____________________
From: Laura
Sent: Wednesday, March 21, 2007 6:26 AM
To: Jennifer
Subject: Intrathecal chemo: it worked!
Hi J. Yesterday I went to the hospital for intrathecal chemo. The neurosurgeon made his guest appearance and showed the oncologist where to go. Cindy came with me. I figured since she’s expert at using the numbing spray from having participated in thousands of breast localizations, she could jump up and spray my head if necessary.
I instinctively reached out to Cindy, and she was a good choice. We started at Memorial around the same time 17 years ago, when I was a fledgling radiologist and she was a breast imaging technologist who worked with our mobile van mammography screening program. Since that time, she has risen through the ranks and is now the Chief Technologist of Breast Imaging at Memorial Hospital. You haven’t met her—she has blonde hair and looks like Cameron Diaz. In fact, before she became a radiology technologist, she used to be a hand model!
Cindy and I seem to be there for each other at key moments in our lives. Two years ago I came to the office on a vacation day morning to tidy up some loose ends. I called Cindy in the mammography office about some work-related issue, and she told me she had a new breast lump. I read her mammogram, did a breast ultrasound and a needle biopsy that day, and referred her to the breast surgeon who cured her breast cancer. And now Cindy’s there for me.
When I introduced her to my oncologist, I said "This is Cindy, the Chief Technologist in Breast Imaging" and he asked her, "Can you help me schedule a mammogram on one of my patients?" Without missing a beat, Cindy said, "Sure, but only if you get this tap on the first try!" Go Cindy! I could have kissed her feet. They got it and gave me the chemo. I felt nauseated afterwards and had to lie down. Cindy was great—she stayed with me and held my hand while I was getting the chemo and took me home in a cab. When we were in my building, Cindy took me upstairs; I introduced her to Nate, Emma, and Carmen, and then I went to lie down.
Now I have to go, because we're having an Athena breakfast 7-9 am today to celebrate recent women's appointments and promotions. If I feel up to it, I'll stay at work for awhile afterwards; otherwise, I'll come home, and go back to sleep. Phil, the oncologist, wants to give me intrathecal twice a week (Tues/Thurs) for the next 3-4 weeks, until the CSF “clears” (which means has no more malignant cells), and then we’ll see.
Love
Laura
____________________
From: Laura
Sent: Thursday, March 22, 2007 2:16 AM
To: Jennifer
Subject: Athena breakfast
Hi Jen. The Athena breakfast yesterday was OK. We have these Athena events once a month. We usually meet from 5-7 pm, but sometimes we have an early breakfast or lunch, so that women with different schedules can come. Athena is a chance for women faculty and administrators from MSKCC to meet informally. Before each Athena, I get a list of all the recent women faculty appointments and promotions (A&Ps), and then I invite those women to Athena to celebrate. We get RSVPs so we know who’s coming, and we have a little celebration in which we give each of them a flower. The event is pretty low-key—people filter in and out as they can.
For the breakfasts, we order food for the number of people coming and it’s served buffet style. I usually get there around 7 and put in the CD with the background music. We mill around and eat and chat until 8, and then I take 10-15 minutes to make announcements. I was supposed to be there at 7 today, and actually was up before 6. I had showered to go, but then I felt sick, all sweaty and nauseated and faint, and I had to lie back down. David was surprised—“Weren't you going to get up?" he asked. When I told him I didn’t feel well, he helped me crawl back into bed. I asked him to wake me up so I could be at work by 7:45.
When he woke me up at 7 am, I felt better. I showered again and put on nice clothes—a flowing skirt with rust and green flowers, a green shirt, a little green jacket, and my favorite green hat (from Banana Republic). I haven’t started losing my hair from the chemo yet, but my head still looks pretty scary, so I’d rather keep it covered. I took a cab to the Boardroom.
When I arrived, about 20 women were there already, and the breakfast buffet was out. Usually we get a continental breakfast, fruit and bagels and pastries, but today we decided on real food—scrambled eggs and home fries. When I entered, people seemed glad to see me. I told them I had brought the background music, and offered them a choice of Murray Perahia playing Mozart Piano Concertos or the Beach Boys Greatest Hits. And guess what? We went with the Beach Boys! That was my first choice too—the Beach Boys got me through the first round of chemo.
After “California Girls,” I got up to make the announcements. Usually I stand at the podium, but when I stood up I got lightheaded and dizzy, like I do when I’m dehydrated after spending too much time on the beach in the hot sun, so I sat down. The other women sat in circles at adjacent tables. I made the announcements, which, in another deviation from the norm, I had written out in advance.
“It has become our tradition at Athena to celebrate women faculty achievements at MSKCC, particularly appointments and promotions,” I said. “We are blessed to work at the greatest cancer hospital in the world. We save lives, and take away fear, and discover cures, and make the world a better place. And these activities keep us busy, and impact on the rest of our lives. It is important in the midst of all of this work to take a moment to celebrate our achievements and congratulate each other on our successes.
This seems particularly important to me now from where I sit. As many of you know, I was recently diagnosed with lymphoma and am being treated here at Memorial. I need six months of chemotherapy, and have already finished two treatments. This experience makes me believe even more strongly that we need to savor special moments in our lives as they come. So today we continue our tradition by welcoming women newly appointed and congratulating women recently promoted at Memorial. Please join me in the following celebrations…”
We congratulated each woman recently appointed or promoted at Memorial by giving her a flower. We passed around a hand-held mike, so that each woman being honored had the chance to speak. I was especially touched when a terrific surgeon whom I had helped with her promotion package, thanked me for my work with women faculty. Then we went back to milling around. I got faint and Maureen asked a nice pediatrician named Yasmin to put me in a cab and take me home.
I lay down most of the morning, and must have napped off and on. When I woke up, Carmen was there. I guess she’s my nanny now. She was so sweet—she got me water and made me herbal tea. After that I fell asleep for real. By the time I woke up, it was dark outside, and the kids had come home.
Emma had decided to help find me the Zen. She went to Barnes & Noble after school and bought me my own Itty Bitty Buddha, a tiny reddish portly gentleman with gynecomastia (male breasts) and a protuberant belly which apparently brings you luck when you rub it, so rub away I did. Carmen made us dinner, David came home, and Carmen left. I hung out with David and the kids between naps. Emma and I watched the latest installation of America's Next Top Model, and we agreed that we both hate Renee, although she did take a good picture of being dead.
This afternoon I have to get another dose of intrathecal chemo. Cindy will come with me again.
Love
Laura
____________________
From: Laura
Sent: Friday, March 23, 2007 6:19 AM
To: Jennifer
Subject: More intrathecal chemo
Dearest Jen,
Notice, first of all, the luxuriously late time on this email—it’s after 6 am now! It’s hard for me to think that only a few months ago, I would have thought 6 am was early. I woke up at 2 am as usual but had some herb tea and a piece of banana bread that Q had bought for me and went back to sleep, listening to the Brahms Clarinet Trio that you and I used to play with Susan, the clarinetist, before she moved to New Jersey. I woke up again at 5 am, showered, took my pharmacy of morning meds, made more tea, had a piece of fruit (not bad nutrition considering the chemo, right?), and now I’m here writing to you.
Yesterday was a busy day—two appointments, neurosurgery staple removal at 11 am and intrathecal methotrexate at 3 pm. I had been a little worried about the staple removal—I figured it would hurt. I wanted Cindy to come with me for the intrathecal chemo, and I didn't want to ask her to come to both. I asked Q to come to the neurosurgery appointment, although I was afraid it might be too graphic for someone who doesn’t work in the hospital, and I figured I'd probably kick her out when the neurosurgeon came in. But it was actually fine—removing the staples took about a minute and didn't hurt at all—it was like taking out a barrette! My neurosurgeon is terrific. I asked how a nice Jewish boy from Tennessee like him got interested in brain surgery, and he replied, “Well, I couldn’t sing.”
After the staples were out, Q took me home in a cab and came upstairs. Carmen was here by then and had cleaned the place and opened the windows and terrace door, so there was fresh air in the apartment. I lay down on the couch and rested while Q and Carmen made lunch. Q had bought me delicious chicken soup and a soft roll from the Vinegar Factory, which was perfect. And then Q left.
I called my older brother; I’d been meaning to call him for days. He seemed apprehensive until I said to him, "So now I've had brain surgery and they're putting chemo into my brain, and I'm still smarter than you!" He laughed, relieved. If I could still talk trash, I must be OK. I asked him to look after our mom, who lives near him in Massachusetts. We had a nice but brief chat until Emma came home. I talked to Emma for a few minutes about her day in school, and then it was time to for intrathecal chemo.
I met Cindy there around 3. They checked my blood counts with a quick “fingerstick,” meaning they just prick your fingertip with a needle. After the results came back, I went in for more intrathecal chemo. The procedure went fine, but afterwards I felt nauseated and I vomited. Wonderful Cindy held my hair back so I wouldn't puke all over it. And another thing I've noticed (as long as I'm using my experience as a patient to revolutionize patient care): have you ever wondered why those tiny little barf basins are so small? Because when you're throwing up, what you really want is not just to puke, but to have to hit a very precise tiny little peanut-shaped target. I asked the nurse, since we’re the finest cancer hospital in the world, don't you think that maybe we could spring for the larger basins? Am I the first puking person to ever want a wider net?
I sat with Cindy for a long time. She is brushing up on her "Reiki" which is a kind of massage that is supposed to have a healing touch, and it helps, or she does, or both, I don't know which. Then we went downstairs. I sat in the lobby (68th between 1st & York) while Cindy got a cab.
A physician colleague named Cheryl walked by. I was still nauseated, and had my head between my knees, trying not to throw up again. Cheryl asked how I was, and I told her I had just had chemo and thrown up, and she said, "Have you talked to other patients who have had similar experiences?" I replied that in the 17 years I've been working here, I have talked to a few cancer patients. And she said, "No, I mean now, as a patient? Maybe you should join a support group." I'm sorry, I know she means well, but here's some advice to people who want to help: if your friend with cancer is about to puke, don’t refer her to a support group. Just give her a bucket.
Cindy got me a cab (just in the nick of time—I was going to use my last reserve of energy to strangle Cheryl), and she slid in and I climbed after her. When I got home, Nate and Carmen were there and then Emma came. I lay down on the living room couch with the TV on. Nate covered me up with a fuzzy green blanket and I fell asleep.
So the intrathecal methotrexate is a bitch. They want me to take nausea meds before my next treatment. I have to get it again on Wednesday. On Thursday I get admitted for the IV methotrexate, which is supposed to be the hardest of all. Phil says I'll be in the hospital at least five days. My spirit can take it but I hope my body's up for it. Bring it on.
Love
Laura
____________________
From: Laura
Sent: Monday, March 19, 2007 4:36 AM
To: Jennifer
Subject: David’s birthday party
Hi Jen. Since you're my "gentle reader," let me tell you about David's 50th birthday party last night. (Note the ungodly time on the email; I’m still on the five days of prednisone from the R-CHOP, and it continues to get me up from 3-5 am daily. Maybe I should call my book "The Prednisone Diaries.")
I'd been thinking about throwing a surprise 50th birthday party for David for a long time. A few years ago, we went to a party for our closest friends, the Berkowitzes. Our dear friend Steve Berkowitz turned 50, and his wife Monique (we call her “Q”), threw him a fabulous dinner party that occupied a small floor of a little bistro downtown. Q had invited friends from all times in Steve's life: growing up in Boston, playing in a band, and rising through the record industry in NY. Each of them got up and told moving and funny stories about Steve from his childhood through his adult life. The party inspired me to do something for David’s 50th birthday.
I enlisted Q to help me plan the party. Given everything that was going on, we decided to keep it simple, with just the four of us (me, David, Nate, and Emma) and the four of them (Q, Steve, and their sons, Nick and Ben). Our families have been close for years. Our nanny had befriended their nanny in Carl Schurz Park when Nick and Nate were babies, and the boys bonded right away. I first met Nick when I was pushing Nate, then 18 months old, in his stroller in the park. Nick waved and said, "Hi, Nate!" It was the first time, to my knowledge, that somebody with whom I was unacquainted knew Nate. In that moment, Nick taught me that Nate was someday going to have a full and independent life that did not always include me! Shortly after that, we all met in the park. Q and I became pregnant with our second children at around the same time and became close friends. The eight of us have spent every New Year's Day together for about 15 years, at our place or theirs.
David still loves jazz, and loves to take the kids to jazz clubs. One of his favorite clubs in the city is a funky place called the Jazz Standard, which has great live music and serves dinner. Q and I looked at the schedule of who is playing, and it turns out that this weekend they had a quartet with a pianist named Bill Charlap, who I knew David liked. We decided to do it on Sunday night.
The kids liked the plan, especially the part about keeping it a surprise from David. Nate tried to help me make the reservations, but when he told them it was for a party of eight, they said you can't make reservations for 8 people. So I called back the manager and said, "Listen, I have cancer, and we need to celebrate my husband's 50th birthday on Sunday because after that I'll be hospitalized." And guess what? It turns out that you CAN make reservations for eight people! So cancer is a good news/bad news thing. Yes, you need toxic chemo—but at least now you can get dinner reservations!
I booked us for the 7:30 set and finalized the plans for Steve, Q, and their kids to meet us there. I had casually mentioned to David earlier in the week that maybe we could go out to eat on Sunday for brunch or dinner. He said dinner is better because the kids need to do their homework during the day (I had been counting on him saying that). Emma overheard the conversation. After David left the room, Emma looked at me admiringly. “Mom, if I had a hat, I would take it off to you.”
When Sunday came, David was full speed ahead in superdrive mode to make sure that the kids got their homework done, and he said he wasn't sure we'd have time to go out to dinner. Emma was worried—what if we can't talk Dad into going? But I reassured Emma by reminding her of the line in My Big Fat Greek Wedding where the Greek mom says that the man of the house may be the head, but the woman is the neck, and she can turn the head whichever way she wants.
Here's how it went down. About 5:45 I was alone in the family room and David came in and asked, "Where are we going for dinner?" When I hedged, he began to suggest restaurants, and then he realized I had a plan. His face was apprehensive and his arms were crossed, something he does in the rare moments when he gets upset. He said he wanted me to tell him what's going on, because he can't deal with any more surprises after the shock of my diagnosis. I told him that I'd made a surprise celebration for his 50th birthday, that we had reservations at the Jazz Standard, that Bill Charlap was playing, that the Berkowitzes were going to meet us there, and that there would be cake and presents. David looked puzzled, like he didn’t understand. He asked, "How can I celebrate my birthday and be happy in the middle of all of this?"
I explained it to him. I told him how much fun it had been for all of us to plan this wonderful dinner, how the kids had been bumping into each other for two days trying to keep it a secret. I told him that we can't make the next six months of our lives all about the cancer. That one of the things that will get us through this is to find the moments in our lives that deserve to be celebrated and to celebrate them. That he was having a birthday, and that Emma is going to Paris for her spring break, that Nate survived the SATs, that I finished 1 of my 18 chemos (only 17 left!), and that after 24 years of marriage we’re still together.
We got in the cab, and Nate gave the driver the address. The Berkowitzes met us in the narrow entryway of the jazz club and I said: “Recipe for instant party: add four Berkowitzes, and let the fun begin!” The eight of us went downstairs to the dimly lit foyer. The restaurant had a sprinkling of small tables and booths with an elevated stage in the front, and the walls were covered with signed photographs of jazz giants who had played there in the past. They seated us at a table with a long curvy booth on the left and cushioned chairs on the right, so we could all be comfortable. David and I were in the middle of the table, between the senior Berkowitzes and all the kids.
One of the most wonderful things about the party was how we’re all so close—some of us got up and moved around to different seats, so by the end of the evening, everybody had talked to everybody. It's so rare in relationships among eight people that all of the possible combinations work, but with our two families, they always have. Good food, great music, and then they brought out the chocolate cake that said “Happy 50th Birthday David” that we had pre-ordered with one candle. I decided not to put in 50 candles, remembering the debacle of the waxed cake from David's college days.
I couldn’t resist making a little speech. David is always teasing me about how I tell the long version of the story, never the short version. He likes to tell me the Colin Quinn joke about his girlfriend telling him an interminable story with every possible detail included, and Colin says to her, “Excuse me, but I don’t want to live your life in real time!” I kept my remarks short and sweet. I thanked everyone for coming and said how glad I was that we could all be here for David’s birthday. Then we drank a toast to wish David a happy birthday—the boys did it with Coke, and Emma had a sip of champagne.
At home, after the kids went to bed, David thanked me and said it was "good to have the distraction for the kids." But it's more than that. We live our lives too fast, and don't look around enough. I realized it once when I was dashing through the reef while scuba diving, as if I had to make some deadline. You're in the water and the coral reef is magnificent; you might as well enjoy the view. The good things are not a distraction. They're the point. David has been saying that for years, and I believed him in theory, but didn't really live my life that way. I’m finally getting it. It’s ironic that I’m teaching David the lesson he’s been trying to teach me for three decades.
On another note—I can't believe you and Sophie watched The Devil Wears Prada last night—Emma & I were watching it too! We just got the DVD. We had seen the movie in the theater in Hilton Head this summer—but the problem with seeing it in Hilton Head is that it instills in you the longing to shop in New York, which is tough to do when you're in South Carolina.
Tomorrow I’m going to work, and then Tuesday intrathecal methotrexate. If they can't find the Omaya this time I'm going over to the mammo office so Cindy can do an ultrasound and draw a big arrow on my head.
Love
Laura
____________________
From: Laura
Sent: Tuesday, March 20, 2007 5:29 AM
To: Jennifer
Subject: The Prednisone Diaries
Hi Jen. This may be the last installment of “The Prednisone Diaries" (3-5 am version) for awhile. Today will be my last day of oral prednisone for this cycle. I take it for the first 5 days after the R-CHOP, and today will be day 5. And darn, I had hoped I'd get the whole apartment cleaned while on that steroid rush! Imagine how clean Mark Maguire's apartment must be.
Yesterday was the first day I really went back to work since the surgery. It was a Monday, and on Mondays and Wednesdays I direct the Program for Women Faculty Affairs. I’d love to show you my office. After you go in the front door, there is a kitchen to the immediate right, and past the kitchen is the door to our suite. My office has a desk, bookcases, a round table that can fit three chairs easily, and a window overlooking some trees on the street, my first office window in over 17 years.
I had a bunch of stuff to do in the office, but I took it slow. I had to finalize some details for this Wednesday’s breakfast meeting of Athena, which is our informal group for women faculty. We call this group Athena after the Greek goddess of wisdom and war. In Homer’s Odyssey, Odysseus asks a wise and trusted old man named Mentor to take care of his son Telemachus when Odysseus goes off to fight the Trojan War. It turns out it is actually Athena, a woman and a goddess, disguised as Mentor, who guides Telemachus in the Odyssey. We thought Athena was the perfect name for a group of women faculty who offer each other support and guidance.
Cindy came to see me in the Women’s Office. She brought me a maroon baseball cap that said “Monk,” after the detective with obsessive compulsive disorder (OCD) who is the hero of my favorite TV show. Monk’s OCD makes him a great detective, because he notices everything, but complicates his life because of his many phobias and rituals. Cindy is a cancer survivor, and last year, when she was recovering after surgery, I sent her a collection of Monk DVDs. It seems right that now that I have cancer, she gave me a Monk cap. A few other friends had sent gifts to the office. One of the good things about having cancer is that people are always giving you “cancer presents.” It’s like Christmas in the spring!
I figured out a plan to structure my days for the immediate future. On Mondays and Wednesdays if I’m up to it, I'll go to the Women's Office. The other days, if I’m not getting treated or hospitalized, I’ll go to my Radiology office to do some administrative work or research. I'll aim to leave work around 4 pm, so I can be here when the kids get home from school. Jen, I'm almost 47, my kids are 17 and 14, and yesterday, when they came home from 11th and 9th grade respectively, I got to offer them milk and cookies and ask them about their day at school. Finally!
When I got home yesterday, I talked to Carmen. I asked her how she thought the kids were doing through all of this. She said that it’s hard on them but they’ll be OK. She told me how much time the kids spend with each other at home these days, talking in Nate’s room with the door closed. I was relieved to hear it. How wonderful if they can support each other. Around 4:30, the kids came home; Emma settled down to schoolwork and Nate closed the door in his room to take a nap.
I went to the laptop to write; Carmen gave me a hug and left. The laptop is on the dining table in our living room, which we redecorated since you last saw it. It still has bookcases on most of the walls, the dining table on the near right, and the piano on the left. We got shades to cover most of the glass windows on the far side of the living room, but left bare the glass door that opens onto the terrace. We bought a big Oriental rug. We also replaced the old couch with an oversized sofa that has big stuffed pillows and got two comfy “glider” chairs in muted colors with a hint of turquoise. I love to sit in one of the gliders and read and listen to David playing the piano. Around 6 pm, the kids emerged from their rooms, hungry for dinner.
We ordered dinner from a neighborhood Italian place called Arturo's, one of our family favorites. I called David on his cell to ask what he wanted me to order for him, and he was glad that I was home. We had a family dinner for a change, and then the kids escaped to their homework. That little extra time with the kids when they get home from school and having dinner all together felt like a gift—I usually don’t get home until after seven. Later I told David that for the next few months I would try to get home before the kids whenever possible, and he said that sounded like a good idea.
Today they’re going to make a second attempt to give me intrathecal methotrexate in the Omaya. David asked me what time the appointment was so he could reschedule his day to come with me, but I don’t want to drag him to all my appointments. He has to work, take care of the kids, and handle the logistics of our lives. If I really need him, like I did when I had brain surgery, I won’t hesitate to ask, but if it’s not essential, I’d rather conserve his energy. Cindy offered to come with me and sounded like she meant it, so I think I’ll take her up on it.
The prednisone buzz is fading, and I may go back to sleep for a little while.
More tomorrow.
Love
Laura
____________________
From: Laura
Sent: Tuesday, March 20, 2007 11:14 PM
To: Cindy
Subject: Oh Me Omaya
Hi Cinderella. Just a note to thank you for your starring role in the drama “Oh Me Omaya.” I appreciate your coming with me for the intrathecal injection today. You were exactly the right person to be there for me when I needed you, and I will never forget it.
Love
Laura
____________________
From: Laura
Sent: Wednesday, March 21, 2007 6:26 AM
To: Jennifer
Subject: Intrathecal chemo: it worked!
Hi J. Yesterday I went to the hospital for intrathecal chemo. The neurosurgeon made his guest appearance and showed the oncologist where to go. Cindy came with me. I figured since she’s expert at using the numbing spray from having participated in thousands of breast localizations, she could jump up and spray my head if necessary.
I instinctively reached out to Cindy, and she was a good choice. We started at Memorial around the same time 17 years ago, when I was a fledgling radiologist and she was a breast imaging technologist who worked with our mobile van mammography screening program. Since that time, she has risen through the ranks and is now the Chief Technologist of Breast Imaging at Memorial Hospital. You haven’t met her—she has blonde hair and looks like Cameron Diaz. In fact, before she became a radiology technologist, she used to be a hand model!
Cindy and I seem to be there for each other at key moments in our lives. Two years ago I came to the office on a vacation day morning to tidy up some loose ends. I called Cindy in the mammography office about some work-related issue, and she told me she had a new breast lump. I read her mammogram, did a breast ultrasound and a needle biopsy that day, and referred her to the breast surgeon who cured her breast cancer. And now Cindy’s there for me.
When I introduced her to my oncologist, I said "This is Cindy, the Chief Technologist in Breast Imaging" and he asked her, "Can you help me schedule a mammogram on one of my patients?" Without missing a beat, Cindy said, "Sure, but only if you get this tap on the first try!" Go Cindy! I could have kissed her feet. They got it and gave me the chemo. I felt nauseated afterwards and had to lie down. Cindy was great—she stayed with me and held my hand while I was getting the chemo and took me home in a cab. When we were in my building, Cindy took me upstairs; I introduced her to Nate, Emma, and Carmen, and then I went to lie down.
Now I have to go, because we're having an Athena breakfast 7-9 am today to celebrate recent women's appointments and promotions. If I feel up to it, I'll stay at work for awhile afterwards; otherwise, I'll come home, and go back to sleep. Phil, the oncologist, wants to give me intrathecal twice a week (Tues/Thurs) for the next 3-4 weeks, until the CSF “clears” (which means has no more malignant cells), and then we’ll see.
Love
Laura
____________________
From: Laura
Sent: Thursday, March 22, 2007 2:16 AM
To: Jennifer
Subject: Athena breakfast
Hi Jen. The Athena breakfast yesterday was OK. We have these Athena events once a month. We usually meet from 5-7 pm, but sometimes we have an early breakfast or lunch, so that women with different schedules can come. Athena is a chance for women faculty and administrators from MSKCC to meet informally. Before each Athena, I get a list of all the recent women faculty appointments and promotions (A&Ps), and then I invite those women to Athena to celebrate. We get RSVPs so we know who’s coming, and we have a little celebration in which we give each of them a flower. The event is pretty low-key—people filter in and out as they can.
For the breakfasts, we order food for the number of people coming and it’s served buffet style. I usually get there around 7 and put in the CD with the background music. We mill around and eat and chat until 8, and then I take 10-15 minutes to make announcements. I was supposed to be there at 7 today, and actually was up before 6. I had showered to go, but then I felt sick, all sweaty and nauseated and faint, and I had to lie back down. David was surprised—“Weren't you going to get up?" he asked. When I told him I didn’t feel well, he helped me crawl back into bed. I asked him to wake me up so I could be at work by 7:45.
When he woke me up at 7 am, I felt better. I showered again and put on nice clothes—a flowing skirt with rust and green flowers, a green shirt, a little green jacket, and my favorite green hat (from Banana Republic). I haven’t started losing my hair from the chemo yet, but my head still looks pretty scary, so I’d rather keep it covered. I took a cab to the Boardroom.
When I arrived, about 20 women were there already, and the breakfast buffet was out. Usually we get a continental breakfast, fruit and bagels and pastries, but today we decided on real food—scrambled eggs and home fries. When I entered, people seemed glad to see me. I told them I had brought the background music, and offered them a choice of Murray Perahia playing Mozart Piano Concertos or the Beach Boys Greatest Hits. And guess what? We went with the Beach Boys! That was my first choice too—the Beach Boys got me through the first round of chemo.
After “California Girls,” I got up to make the announcements. Usually I stand at the podium, but when I stood up I got lightheaded and dizzy, like I do when I’m dehydrated after spending too much time on the beach in the hot sun, so I sat down. The other women sat in circles at adjacent tables. I made the announcements, which, in another deviation from the norm, I had written out in advance.
“It has become our tradition at Athena to celebrate women faculty achievements at MSKCC, particularly appointments and promotions,” I said. “We are blessed to work at the greatest cancer hospital in the world. We save lives, and take away fear, and discover cures, and make the world a better place. And these activities keep us busy, and impact on the rest of our lives. It is important in the midst of all of this work to take a moment to celebrate our achievements and congratulate each other on our successes.
This seems particularly important to me now from where I sit. As many of you know, I was recently diagnosed with lymphoma and am being treated here at Memorial. I need six months of chemotherapy, and have already finished two treatments. This experience makes me believe even more strongly that we need to savor special moments in our lives as they come. So today we continue our tradition by welcoming women newly appointed and congratulating women recently promoted at Memorial. Please join me in the following celebrations…”
We congratulated each woman recently appointed or promoted at Memorial by giving her a flower. We passed around a hand-held mike, so that each woman being honored had the chance to speak. I was especially touched when a terrific surgeon whom I had helped with her promotion package, thanked me for my work with women faculty. Then we went back to milling around. I got faint and Maureen asked a nice pediatrician named Yasmin to put me in a cab and take me home.
I lay down most of the morning, and must have napped off and on. When I woke up, Carmen was there. I guess she’s my nanny now. She was so sweet—she got me water and made me herbal tea. After that I fell asleep for real. By the time I woke up, it was dark outside, and the kids had come home.
Emma had decided to help find me the Zen. She went to Barnes & Noble after school and bought me my own Itty Bitty Buddha, a tiny reddish portly gentleman with gynecomastia (male breasts) and a protuberant belly which apparently brings you luck when you rub it, so rub away I did. Carmen made us dinner, David came home, and Carmen left. I hung out with David and the kids between naps. Emma and I watched the latest installation of America's Next Top Model, and we agreed that we both hate Renee, although she did take a good picture of being dead.
This afternoon I have to get another dose of intrathecal chemo. Cindy will come with me again.
Love
Laura
____________________
From: Laura
Sent: Friday, March 23, 2007 6:19 AM
To: Jennifer
Subject: More intrathecal chemo
Dearest Jen,
Notice, first of all, the luxuriously late time on this email—it’s after 6 am now! It’s hard for me to think that only a few months ago, I would have thought 6 am was early. I woke up at 2 am as usual but had some herb tea and a piece of banana bread that Q had bought for me and went back to sleep, listening to the Brahms Clarinet Trio that you and I used to play with Susan, the clarinetist, before she moved to New Jersey. I woke up again at 5 am, showered, took my pharmacy of morning meds, made more tea, had a piece of fruit (not bad nutrition considering the chemo, right?), and now I’m here writing to you.
Yesterday was a busy day—two appointments, neurosurgery staple removal at 11 am and intrathecal methotrexate at 3 pm. I had been a little worried about the staple removal—I figured it would hurt. I wanted Cindy to come with me for the intrathecal chemo, and I didn't want to ask her to come to both. I asked Q to come to the neurosurgery appointment, although I was afraid it might be too graphic for someone who doesn’t work in the hospital, and I figured I'd probably kick her out when the neurosurgeon came in. But it was actually fine—removing the staples took about a minute and didn't hurt at all—it was like taking out a barrette! My neurosurgeon is terrific. I asked how a nice Jewish boy from Tennessee like him got interested in brain surgery, and he replied, “Well, I couldn’t sing.”
After the staples were out, Q took me home in a cab and came upstairs. Carmen was here by then and had cleaned the place and opened the windows and terrace door, so there was fresh air in the apartment. I lay down on the couch and rested while Q and Carmen made lunch. Q had bought me delicious chicken soup and a soft roll from the Vinegar Factory, which was perfect. And then Q left.
I called my older brother; I’d been meaning to call him for days. He seemed apprehensive until I said to him, "So now I've had brain surgery and they're putting chemo into my brain, and I'm still smarter than you!" He laughed, relieved. If I could still talk trash, I must be OK. I asked him to look after our mom, who lives near him in Massachusetts. We had a nice but brief chat until Emma came home. I talked to Emma for a few minutes about her day in school, and then it was time to for intrathecal chemo.
I met Cindy there around 3. They checked my blood counts with a quick “fingerstick,” meaning they just prick your fingertip with a needle. After the results came back, I went in for more intrathecal chemo. The procedure went fine, but afterwards I felt nauseated and I vomited. Wonderful Cindy held my hair back so I wouldn't puke all over it. And another thing I've noticed (as long as I'm using my experience as a patient to revolutionize patient care): have you ever wondered why those tiny little barf basins are so small? Because when you're throwing up, what you really want is not just to puke, but to have to hit a very precise tiny little peanut-shaped target. I asked the nurse, since we’re the finest cancer hospital in the world, don't you think that maybe we could spring for the larger basins? Am I the first puking person to ever want a wider net?
I sat with Cindy for a long time. She is brushing up on her "Reiki" which is a kind of massage that is supposed to have a healing touch, and it helps, or she does, or both, I don't know which. Then we went downstairs. I sat in the lobby (68th between 1st & York) while Cindy got a cab.
A physician colleague named Cheryl walked by. I was still nauseated, and had my head between my knees, trying not to throw up again. Cheryl asked how I was, and I told her I had just had chemo and thrown up, and she said, "Have you talked to other patients who have had similar experiences?" I replied that in the 17 years I've been working here, I have talked to a few cancer patients. And she said, "No, I mean now, as a patient? Maybe you should join a support group." I'm sorry, I know she means well, but here's some advice to people who want to help: if your friend with cancer is about to puke, don’t refer her to a support group. Just give her a bucket.
Cindy got me a cab (just in the nick of time—I was going to use my last reserve of energy to strangle Cheryl), and she slid in and I climbed after her. When I got home, Nate and Carmen were there and then Emma came. I lay down on the living room couch with the TV on. Nate covered me up with a fuzzy green blanket and I fell asleep.
So the intrathecal methotrexate is a bitch. They want me to take nausea meds before my next treatment. I have to get it again on Wednesday. On Thursday I get admitted for the IV methotrexate, which is supposed to be the hardest of all. Phil says I'll be in the hospital at least five days. My spirit can take it but I hope my body's up for it. Bring it on.
Love
Laura
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