Chapter 1: Getting Ready

Reach out to your friends. Write about it.

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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

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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

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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

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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

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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

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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

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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