Chapter 8: Reaching Out

Ask for what you need. Use your experience to help others.

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From: Laura
Sent: Tuesday, April 10, 2007 6:20 PM
To: Mel
Subject: Heads up, and Jung-min

Hi Mel. I am writing for three reasons. First, I want to tell you how wonderful it was to see you at the National Institutes of Health breast cancer meeting on ductal carcinoma in situ (DCIS) in January. I loved your presentation of the data on DCIS from your surgical practice. You don't look a day older than you did when we met in Venezuela 15 years ago. It was like old times.

The second reason is that I want to give you a heads up on some stuff going on with me. I was recently diagnosed with an aggressive marginal B zone lymphoma and started six months of chemotherapy in March. So far, I’ve received 7 of 18 doses of chemo: 2 of 6 outpatient IV R-CHOPS, 4 of 6 outpatient intrathecal methotrexates, and 1 of 6 high-dose IV methotrexates. If all goes well, I'll be done in September.

But the most important reason I'm writing is reason #3. I have the most fabulous fellow on the planet named Jung-min who has been doing research with me for two years. She has applied for the Oncology Fellowship at your hospital to begin July 2008. Since joining me, she has presented an abstract at a national meeting, written a first-author paper in press, and started a second manuscript. In addition, while I’ve been getting chemo, she has kept up my huge database on image-guided breast biopsy. Jung-min has allowed me to maintain an active research program when it would have otherwise been impossible. I don’t know anyone else who could have stepped to the plate the way she did.

Jung-min will be coming out to interview at your hospital soon (I’ll send you the exact dates). I’d love for you to speak with her. I know you’re not involved with admissions to the Oncology program, but it would be great if she could sit down and talk to you about the pros and cons of the different programs in your area that she’s considering, to help her decide what would be best for her.

She can be shy at first, but I know she’ll be comfortable with you. Don't let her quiet demeanor dissuade you. Jung-min is among the most outstanding trainees I’ve ever had in almost two decades as well as a caring and sensitive person, and I've worked with some pretty awesome people.

Love
Laura

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From: Laura
Sent: Wednesday, April 11, 2007 8:28 AM
To: Mel
Subject: Kindred spirits

Dear Mel,

Thanks for your beautiful letter. I see that we are kindred spirits.

I didn’t know about your health problems—I am so sorry that you had to go through that! I am inspired by your survival, but it doesn't surprise me about you. If you can make it through an aortic dissection, maybe I can handle a pinch of lymphoma!

I am writing a book about the experience of being a doctor and a patient. I'm thinking of calling it "Both Sides Now" (like the Judy Collins song).

I still look for justice in the universe, in spite of all evidence to the contrary. For some things I can't find the justice. Maybe that's where faith comes in. I didn't think I had much of that, but I'm finding more comfort in the prayer stuff than I would have believed possible.

I will send you updates. Thank you for agreeing to meet with Jung-min. I love her like a daughter.

Love
Laura

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From: Laura
Sent: Wednesday, April 11, 2007 8.45 PM
To: Mel
Subject: Backstory: David

Dear Mel,

I got an email back from the fellowship program director at your hospital. It looks like she is one of the good guys! I told Jung-min that she should look for you when she visits, and that you would look out for her. You will love her too.

You are right when you talk about how we meet at meetings and know so little about each other. Let me tell you more.

I met my husband, David, the summer before my freshman year in college. I was 16 (I had skipped a couple of years in school) and David was 19. He was my lab partner in Physics at Harvard Summer School. I was sitting in class on the first day in a pair of very short shorts (it was the seventies). David walked in: long black hair, moustache and beard, old beat-up sneakers, blue t- shirt, cozy flannel overshirt, and faded jeans, with a Dos Passos novel in his back pocket. He had a choice of sitting next to me or a woman with very large breasts named Liane who went to Wellesley. Luckily he picked me. I was especially lucky because I had originally signed up to study mime and juggling in Paris, Maine that summer, and switched to Physics at the last minute. Otherwise, I might have married a juggler!

After class, we went out for coffee together at a little café in the Harvard Science Center. He told me his name was David. I told him my name was Laura and that I had a brother named David (his age) and he said he had a sister named Laura (my age, living in Hollywood). When he revealed that his grandmother had a parakeet with the same name as my parakeet (Blue Boy), I knew that we were meant to be together. I found out quickly that he was a jazz enthusiast and was missing it terribly in Boston. He had brought two jazz mixed tapes and a small tape player, and listened to those tapes constantly. We shared a love of music; I’d previously listened primarily to classical music, but he introduced me to jazz.

A couple of nights after we met, I had to go get groceries in Harvard Square. David needed some stuff and asked me to pick it up and gave me his key to drop the stuff off in his room. I made a copy of his key. I didn't realize that this was a big deal, something that got discussed—I was just being practical. I figured I'm going to be spending time with this guy, so I need a key. I also got him one of those Hallmark cards that said, “Love is where you find it… I’ll be here all day.” And I wrote in: “…and for the rest of your life.” Why he didn't run screaming in the other direction I can't imagine.

We were long distance for four years in college—he went to Dartmouth and I went to Harvard—and we had a commuter bus ticket from Boston to White River Junction, Vermont. He was a year ahead of me in school, so he graduated first. He went to medical school in New York, and I followed him to New York when I graduated college. We lived together for two years in medical school and then got married. I had basically asked him to marry me the summer we met; a mere six years later, he said yes. (But the company line is, he got down on bended knee and begged me to be his wife. That’s our story and we’re sticking to it.)

David and I have known each other 31 years out of the 47 I've been alive, and we celebrate our 25th wedding anniversary this June. He’s a doctor specializing in Infectious Disease at Beth Israel in downtown New York, and does a lot of clinical work and research with AIDS patients. David is the most amazing husband and father. We go to jazz clubs together, and read books and hang out with the kids. He is my bird—we mated for life.

If I had to have cancer, I couldn’t have picked a better partner to help me through it. Sometimes I think it’s harder on the spouse than it is on the cancer patient. My mission is focused and defined (survival), while David has to pick up the pieces, emotionally support me and the kids, and deal with all the logistics of daily life. I tell the women faculty that one of the most important decisions they make is about a life partner. Life throws you a lot of curve balls, and if you’re going to choose a partner, it should be someone who’ll actually help. Unfortunately, by the time they’re women faculty they’ve often made the choice already, and that ship has sailed. Sometimes I think the best thing we could do in the Women’s Office is to find a bunch of suitable Significant Others for our women faculty, but I bet that’s way beyond our budget.

Love
Laura

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From: Laura
Sent: Thursday, April 12, 2007 8:47 PM
To: Mel
Subject: Backstory: Dad

Dear Mel,

Thanks for your email. I loved the story of how your parents met when your father was pumping gas in a gas station and your mother was in the car with her step-mother. I’m sorry that they each lost a parent at a young age. It’s interesting that the lesson they taught you as a child was that everything you have could quickly be taken away from you. You asked about my parents, so I’ll tell you.

My father, Robert, grew up in Chicago in the Depression. His dad died when he was six years old. He and his mom lived with relatives who argued all the time. My father was a peace-loving man who would walk 20 miles to avoid an argument. Being dependent on cantankerous relatives taught him the importance of being able to make your own living. “Be financially independent” was the take-home message of my childhood. My dad was a gifted pianist and had studied with Vladimir Horowitz’s teacher. He could have been a concert pianist, but he hated to travel. More importantly, having grown up poor, he wanted a steady income.

The year my father graduated from high school, Sears/Roebuck gave a full tuition scholarship to the student who graduated first in his class from John Marshall High School, where my dad went. That person was my father. Being #2 would not have been good enough. That's how I learned to go for the top. He went to the University of Chicago (his home town) courtesy of Sears, joined the Army in World War II, and then attended Law School courtesy of the Army. When I went to college, it was a great source of pride to him that he could help pay for my education.

My dad was a law professor at Boston University. Law was an interesting career choice for a man who hated an argument. He practiced law only briefly. He mainly taught, and he was a wonderful teacher. He never pretended to know something he didn’t—instead, he asked someone who knew, looked it up, or figured it out himself. I learned that lesson from him, and it’s crucial, especially in medicine, where it can be life-threatening to pretend you know something you don’t.

He used to take me out on Sunday mornings to breakfast at a Jewish deli in Boston called the B&D, and he taught me how to do algebra problems on the back of a paper napkin. John is two years older than Mary. In one year, John will be twice as old as Mary is now. How old are John and Mary? And I was always amazed that my father knew so many Johns and so many Marys.

My father met my mother on a blind date when she was in law school and he was a practicing lawyer. A friend asked him if he wanted to meet a cute blonde or a big Israeli. He chose the big Israeli, Judith—that’s my mom. She’s tall, about 5’10”; he was 5’7”. She got the best grades in the class and worked the hardest. In a Master of Laws program they took after they got married, my mom studied like crazy; my dad just skimmed her notes the night before the exam. She got the highest score and he got the next highest—a hair lower, but with much less work. She laughs when she tells the story. I was a student in my mom’s tradition of relentless workaholism, while my husband was a more inspired and laid back student like my dad. My mom gave up law to be an artist, while my dad became a law professor.

Having pulled himself up from poverty, my father knew the value of hard work. He used to quote Thomas Edison, who said, “Genius is 1% inspiration and 99% perspiration.” We used to play the card game, “Hearts.” Usually, in Hearts, every heart you win counts one point against you, and the Queen of Spades counts 13 points against you. However, winning all of the hearts and the Queen of Spades is a landslide victory called “shooting the moon.” My dad always tried to shoot the moon, and usually succeeded. He taught me to try even when the outcome was uncertain. Again, he quoted Edison: when Edison’s initial attempts to invent the light bulb did not yield the results he hoped, he said, “I have not failed. I’ve just found 10,000 ways that don’t work.”

When I was in high school, Stanford was my top choice for college. I looked at the map of the country and saw that Palo Alto, California was about as far as you could go in the United States from Newton, Massachusetts, and figured that's what I had to do to be independent. Luckily I was rejected. Maybe they thought I was too young at 16. But I picked up the broken pieces of my life and went to Harvard. Proximity to my family turned out to be a wonderful thing. My father had a heart attack the summer after my freshman year in college and then multiple strokes after that, and spent much of the next few years in and out of the hospital. Because I was in school so close to home, I was able to spend precious time with him.

While I was growing up, my father loved to play the piano. I remember falling asleep at night listening to him playing Chopin Nocturnes (how many girls are lucky enough to get that kind of lullaby?). Encouraged by my father, I started playing the piano when I was six. When I was ten and again when I was twelve, I was the guest piano soloist with the Boston Symphony Orchestra. We had two pianos at home, a small upright and a big grand piano, both in our living room. We played piano duets together, for fun and in concerts. My favorite was the Schubert Fantastia in F Minor, where the voices of the two pianos echo and complement each other like two inseparable friends.

My father loved to read and analyze literature. He was a terrific writer and published short stories. A gentle soul, he wrote surprisingly dark stories, some of which reflected memories of German concentration camps that he had seen in World War II. He loved to read books about the process of writing, like The Technique of the Novel by Thomas Uzzell. I got my love of reading and writing from him, and have passed it on to Nate and Emma. He would have loved to write a book, but he got stuck in the outline phase. Years of outlines, covering one yellow legal pad after another with his exuberant handwriting in black ink.

I remember speaking to him one night right after he had the stroke that robbed him of his ability to play the piano. I have never heard a voice so broken by loss. He told me that he was sorry I had been born, because he did not want me to get hurt someday as he had been hurt. He said, "Why couldn't I have brought someone into the world who is heartless, cruel, cold, and unfeeling? The world is no place for sensitive people."

When he was in the hospital, he had slurred speech from the stroke, but his mind was lucid. I remember how some of the doctors and nurses treated him like he was stupid because he couldn’t enunciate his words clearly. I couldn't believe what a difference it made to his outlook and self-esteem whether he was treated with respect and compassion or with the assumption that he was an idiot.

My father had always wanted me to be a doctor. When I was six years old and playing the piano, people would ask my father, “What does Laura want to be?” And he said, "She wants to be a concert pianist, but medicine will be her back-up profession." I remember thinking, “I never said that. That must be what he wants.” When my father got sick during my college years, I gave up my physics major (which I had particularly enjoyed because I was the only girl in the class) and decided to be a doctor. I figured that’s what he wanted, and I loved him so much that I wanted it too. Maybe I could keep people from suffering the way he suffered.

My father taught me what it takes to master something. He used to practice the piano for hours daily. He used to say, “If I don’t practice one day, I know it; if I don’t practice two days, my friends know it; if I don’t practice three days, the audience knows it.” After the first stroke, he was tireless at doing his rehabilitation exercises. He spent hours relearning activities like putting on socks, tying his shoes, and walking. He never got impatient or frustrated; if he didn’t succeed, he would simply do it again. Once I went to rehab with him, and I remember how he asked the therapist to give him more exercises. “I’m very good at practicing,” he told her. He was right.

My father died right after I began my radiology residency in New York. He had spent much of the last few years of his life terrified of becoming a vegetable from another stroke. As it turned out, he worried for nothing—he died of a massive heart attack in the middle of a chess game, and he was a knight and a pawn ahead at the time. If my father had only known that would be his exit strategy, the last few years of his life would have been so much better! He would have particularly enjoyed that at the moment of his death during the chess game, he was winning.

He wanted to be cremated and have his ashes scattered in the ocean. On the morning of his funeral, I couldn't believe that the sun was shining as if nothing had happened. We rented a boat in Maine, and released his ashes with Beethoven’s 7th Symphony, 2nd movement (Allegro) playing. I chose that music because it combines major and minor keys, expressing how life is full of both sorrow and joy: it’s sad that he died, but it’s even more glorious that he lived. The score starts with a simple base line, and then progressively adds more and more instruments until there is a groundswell of unbelievably beautiful music, analogous to starting at birth, finding more complexity and joy at each level of life, and finally earning the ascent into heaven.

During the funeral, I was comforted by the fact that my father had met and liked David, and that he got to attend our wedding three years before he died. However, I was seized by the thought that now my kids (who were not even a twinkle in my eye at that point!) would never get to meet my father. It was an odd thought. Until then I hadn’t been certain about having children, but when I lost my father, I realized that having kids was no longer a question of whether, only when. I wish I could talk to my father again, even just for five minutes, and I wish he could meet Nate and Emma. Talk about a sense of humor. He had it all.

That’s my story. Maybe that’s how I'll tell it in the book. The book may end up being emails that I write and receive during this journey. If it's OK with you, I may include the picture you sent me of the seed becoming a plant that grew right through the roof of your hot tub. That was a beautiful picture and a beautiful story. I hope to be strong like the seed, and to break through hot tub covers in a single bound.

Love
Laura

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From: Laura
Sent: Friday, April 13, 2007 5:36 AM
To: Mark
Subject: Pain: ideas

Hi Mark. I want to touch base with you in your capacity as a neurosurgeon about something important. I've had four Omaya taps for intrathecal chemo so far, so I speak from some experience. My lymphoma doc is a wonderful doctor and a terrific human being. The procedure itself, however, is painful.

Sometimes, as doctors, we feel that the most important aspect of treatment is killing the cancer, and if that means you feel a little pain, you should “suck it up.” I agree that if killing the cancer requires pain, suck it up. But if the cancer can be cured in a way that is painful or less painful but equally effective, the less painful method is the clear choice.

There is a feeling (of which I have also been guilty, when I got to play doctor) that focusing on the pain distracts from the major mission of curing the cancer. That's wrong. Even if the physician who has primary responsibility for killing the cancer doesn't want to be "distracted" by thinking about pain, we should make it a priority that someone on the team is focused on pain relief. We should not tolerate errors in pain management any more than we would tolerate giving the wrong dose of chemo, or treating with an improper antibiotic, or performing surgery on the wrong side of the body.

I have specific suggestions for pain prevention when putting a needle into an Omaya. For the past few decades in Breast Imaging, we’ve been doing pre-operative needle localization procedures, in which we place a wire in a woman's breast pre-operatively to guide the surgeon towards a breast lesion that can’t be felt. Before the loc, we spray the area of the breast with a spray called "Gebauer's Ethyl Chloride Medium Stream Spray," which is considered a "topical anesthetic skin refrigerant" and works instantly. Another good local anesthetic is Emla cream. It can be applied over the area to be accessed (eg the Omaya or Mediport), but unlike the spray, the Emla cream requires half an hour to work.

Since you put the Omayas in during neurosurgery, is there a way you can convey in the post-op instructions the recommendation for numbing prior to putting a needle into the Omaya to remove fluid or give chemo? You can even suggest the Ethyl Chloride spray and the Emla cream. Either the treating oncologist could give the patient the necessary prescriptions, or we can make sure that the meds are available in all the chemo suites so that they can be used to increase patient comfort for all needling procedures. The spray or Emla cream could also be used prior to other needling procedures elsewhere in the body, like accessing Mediports. After the anesthesia, the area can be prepped with sterile technique, so it shouldn’t increase the chance of infection.

Another thing. I learned through personal experience that the likelihood of vomiting is directly related to the speed of intrathecal injection. Sam, my neurologist, confirmed that if it's injected too quickly, once it hits the 4th ventricle it tickles the vomiting center and you puke. If we're rewriting the post-Omaya instructions, can we include the recommendation to inject slowly, and maybe even give a guideline as to the maximum suggested injection rate? Most intrathecal chemo patients probably believe that vomiting just goes with the territory, and would not think to ask the physician to slow down. We need to write it into the guidelines to make it happen.

I’d appreciate your thoughts. I am no wimp and if pain is necessary to cure my lymphoma, I’ll endure it. But if we can make it less painful or even painless, we should go for it. Even a small amount of pain per procedure over a long course of treatment adds up, and gives those individuals with cancer yet another thing to dread. It is our mission not only to cure cancer but also to relieve suffering. We can be the best at both. Let's do it. Then I will know that my lymphoma is for a good reason, and I will find the justice in the universe that I perpetually seek.

Best wishes
And in a spirit of making things better (always)
Laura