Chapter 9: Blurry Vision

Get your priorities straight.

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From: Laura
Sent: Friday, April 13, 2007 8:26 PM
To: Sam
Subject: Blurry vision: questions

Hi Sam. Question for you about my eyes—I have worsening blurry vision the last few days, which makes it difficult to read (but you notice it doesn't stop me from sending an email!).

I've been near-sighted requiring glasses since I was six years old. I started to have trouble reading several months ago, and now have "progressives,” which I gather are the new “bifocals.” When I began having the neuro symptoms that led to the eventual diagnosis of lymphoma, I saw Jack of Ophthalmology here, who saw a few cells in my eyes that were suspicious for lymphoma (apparently that’s reasonably frequent if you have lymphoma in the CSF). .

Now I've finished four intrathecal methotrexates, two IV R-CHOPS, and one high-dose IV methotrexate, with the most recent intrathecal methotrexate and IV R-CHOP being this past Tuesday 4/10 (which I tolerated fine). In the past several days I've noticed a worsening of blurry vision, which makes it difficult to read. Could this be related to the steroids (I'm on day three of five days of oral prednisone through Sunday 4/15)? If it is due to the prednisone, is the blurry vision likely to get better when I’m off prednisone? I’m especially concerned because my eyes are key in radiology, especially breast imaging—you have to be sharp if you’re going to pick up the tiny microcalcifications that may be the only sign of an early breast cancer. Alternatively, could the visual blurring be due to worsening lymphoma of the eyes, especially in light of the abnormal cells in my eyes before I began treatment?

Should I have labs checked (and if so, which labs and when, and can you put in and release the orders)? My next scheduled appointment with my oncologist is on Thursday 4/19 at noon, when I am scheduled to get more intrathecal chemo. Should I make another appointment with Jack, see my outside eye doctor to get my prescription checked, or just wait until Thursday and see my oncologist then?

Thanks for your advice!

Laura

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From: Laura
Sent: Saturday, April 14, 2007 4:32 AM
To: Jennifer
Subject: Saturday

Hi Jen. We had a great day yesterday. In the morning, David rented a car to take Emma and me to a parent-teacher conference at Emma’s school. I wore a hat called the Gordon, which was a sewn straw fedora in a muted pink with flip brim and silk gray trim.

I was so proud of Emma at the conference. Going from elementary school to high school is a big transition, even without having a sick mom, and she’s been handling it beautifully. Emma came to the conference with us, and became a little shy when her advisor read all the fabulous comments from her teachers. Afterwards, Emma went to class. David dropped me off at the hospital and went to work.

The main event on my calendar at work today was a meeting about “the MSK Nanny Resource,” an internal list-serve we’re creating to address the issue of child care for employees. We brainstormed this idea with Amy and Nancy, my colleagues in Work/Life, after we collaborated on a seminar called "How to Find a Nanny." On the Nanny Resource, employees can post if they want to hire or share a nanny, or if they have a great nanny they no longer need. We met with the information technology guy, Kevin, who was helpful. We left with a list of things to do, all doable. I think it will happen!

Every month we put a new “Quote of the Month” on the Women Faculty Affairs website. This month we’re posting a poem by Emily Dickinson. I’m sending it to you below, because I thought you’d like it.

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Hope is the thing with feathers

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

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Love
Laura

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From: Laura
Sent: Sunday, April 15, 2007 7:29 PM
To: Jennifer
Subject: Bird by Bird

Hi Jen. Today I spent most of the day rereading one of my favorite books, Anne Lamott’s Bird by Bird. Although the book is ostensibly about writing, it might just as well be about dealing with cancer. The title story is derived from an incident in which the author’s big brother, as a kid, was assigned to write an essay about the birds of North America. He found the task overwhelming. When his father asked him what the problem was, Lamott’s brother said that there were a lot of birds in North America. His father looked at him reassuringly and said, “Bird by bird, buddy. Just take it bird by bird.”

The story reminds me of advice Maureen gave me shortly after I was diagnosed, when I was considering declining treatment. She told me I don’t have to agree to the whole deal; I could just agree to start, and then take it one day at a time. The advice was comforting. This approach let me maintain the illusion of control (“it’s no illusion; you ARE in control,” Maureen would say). It also broke up the impossible task of six months of chemo into a series of manageable tasks, dealing with each individual day. I would do it bird by bird.

Love
Laura

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From: Laura
Sent: Monday, April 16, 2007 4:56 AM
To: Jennifer
Subject: Broadway

Hi Jen. Q and I went to see the Eugene O’Neill play “Moon for the Misbegotten” starring Kevin Spacey on Broadway yesterday, and it was fabulous. I decided to wear a hat that didn’t go up too high on my head, so I wouldn’t block the view of the person sitting behind me. I chose the Reese paisley, which has a fabric slouch crown with a split cuff brim and a “self trim,” which means part of the same fabric as the hat serves as the trim. The fabric is a subtle silver, beige, and black paisley pattern, with a small sewn silk flower at the side.

The play was great, but it desperately needed editing. If I were an English professor, I would assign my students to cut an hour off of it—the run time was almost 3 hours. It took me two nausea pills at $40/pill (that Zofran is worth its weight in gold) to get through the play. If the play had been an hour shorter, I could have done it in one nausea pill. Do you think the Estate of Eugene O'Neill would listen to reason? They owe me 40 bucks.

The hardest part of the outing was afterwards, when Q and I went to get a cab. It was rainy and the streets were slippery. As I was getting into the cab I slipped and almost fell, and then hit my head (the part with the Omaya) against the cab. I started to cry. Q helped me up and pulled me into the cab and gave me a hug, which I desperately needed. I try to be brave and optimistic about all this, but the bottom line is that cancer makes you feel vulnerable, and I used to feel invincible.

I don’t remember if I told you—I started having severe visual blurring, which is bothersome, because reading and writing are integral in my life right now. The blurring began around the time I started my latest course of prednisone. Sam, my neurologist, said that visual blurring is common on prednisone. Apparently the symptoms can be triggered by either raising or lowering the steroid dose but usually disappear after steroids are stopped. Steroids can also cause cataracts or glaucoma. These possible side effects are not good news, but all of them are better than having the visual blurring represent worsening lymphoma in my eyes. Yesterday I took my last dose of prednisone for the month, so hopefully the symptoms will improve. I’m still going to see the eye doctor to make sure.

My father is on my mind a lot these days. I’m listening to piano music that he played, like Schumann’s Kreisleriana; he especially liked part 1, for which the tempo marking is “agitatissimo,” or very agitated. The piece is fiendishly difficult, requiring a massive reach for both hands. My father used to tell me how Schumann injured his right hand, possibly as the result of a mechanical device he used to increase the strength, independence, and span of his fingers. Apparently Schumann became psychologically unstable, and spent the last two years of his life in a mental institution. Schumann’s wife, Clara, an excellent pianist who was the daughter of Schumann’s boyhood piano teacher, was the one who held it together in their family. Any frustration my father ever felt was released in the Olympic-level workout of the Kleisleriana.

My father loved to play Beethoven sonatas, especially the ones that were the most technically challenging. I’ve been listening to one of his favorites, Beethoven’s “Appassionata” Sonata #23 Op. 57. I remember him playing the third movement, with a tempo marking “allegro ma non troppo” (fast but not too fast). As I watched his fingers fly across the keys, I doubted that it was possible to play it any faster. My dad used to tell me that Beethoven started to lose his hearing in his twenties and was completely deaf by age 50. It struck me as ironic that a man who was so passionate about composing music lost his hearing. I thought about Beethoven going deaf when my father lost his manual dexterity and his piano playing after a stroke.

I’ve been listening to Mozart sonatas that my father and I played together. One of my father’s favorite books was a biography of Mozart by Marcia Davenport. My father loved to tell me stories about Wolfgang Amadeus Mozart: when Mozart was three, he watched his older sister Nannerl play the piano; when he was four, his father Leopold started to give him piano lesions; he began composing at age five; and he spent his subsequent childhood traveling with Leopold all over Europe, performing as a child prodigy. My dad always said that Mozart wrote more than 600 priceless compositions, but died “a poor churchmouse” at age 35. I knew that if my dad had been Wolfgang’s father, he would have encouraged him to find a better paying job.

One of the first pieces my father and I played together was the Mozart Sonata for 1 piano, 4 hands, in D Major, KV 381/123a. I used to laugh when our hands got tangled up as one of us reached over the other for a trill or arpeggio outside of our own “turf.” As I got older, we each wanted to have an entire keyboard to ourselves, so we preferred music for two pianos, like the Mozart D Major Piano Sonata, K. 448. To this day, D Major still feels to me like a joyful key of innocence and youth. Listening to the music my dad played, and especially to the music we played together, makes me feel like he’s up there looking out for me.

Love
Laura

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From: Laura
Sent: Monday, April 16, 2007 5:22 PM
To: Jennifer
Subject: Emily Dickinson

Hi Jen. I worked in the Women’s Office today. I wore a hat called the Roz, a two-piece cloche in black and brown with a curved pheasant feather rising up from the side. On the way to a meeting, I was in the elevator with an elderly couple. The wife was looking at me and speaking to her husband in Italian. I smiled at her and said, “You’re talking about my hat, aren’t you?” And she said to me in a thick Italian accent, “Yes. I love your hat!” When I’m wearing these hats, I never have to worry about making conversation.

I found the perfect Emily Dickinson poem that captures my feelings about how I want to use my experience with pain to help others. Here's the poem:

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If I can stop one heart from breaking

If I can stop one heart from breaking
I shall not live in vain;
If I can ease one life the aching
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

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Love
Laura

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From: PWFA/President's Office
Sent: Monday, April 16, 2007 12:48 PM
To: All Women Faculty
Subject: Athena Tuesday 4/24, 5 pm

To Women Faculty:

Please come to our next meeting of ATHENA, our informal group for women faculty! Info is:

ATHENA, Tues 4/24 5-7 pm, Faculty Club
Come for a few minutes or stay longer, if you like! Refreshments will be provided.

I hope you’ll join us!

Best wishes
Laura
Laura Liberman MD
Director, Program for Women Faculty Affairs

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From: Laura
Sent: Monday, April 16, 2007 7:58 PM
To: Jimmie
Subject: Your amazing book!

Hi Jimmie. Thank you for sending me your amazing, wonderful, awesome, incredible book, The Human Side of Cancer, which is exactly what I need to read right now! I feel like you wrote it for me. After I finish reading it, can we talk? You are a fantastic writer!

Also, thanks for sending me the Stephen Gould book, Full House: The Spread of Excellence from Plato to Darwin. I especially liked the chapter called “Case One, A Personal Story: Where any measure of a central tendency acts as a harmful abstraction, and variation stands out as the only meaningful reality.” Basically, Gould seems to be saying that even if the median survival of your cancer is 50% at one year, that means half of the people with that cancer live less than one year, but half live more—and some people may live ten, twenty, thirty years or longer. This news is particularly good for people like me, who are told that their illness has a lousy median survival. When I saw Figure 7 on page 55, I imagined myself way on the right, at the highest end of the survival bell curve, waving and smiling.

Your book and Gould’s should be recommended for every cancer patient.

Best wishes
Laura

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From: Laura
Sent: Tuesday, April 17, 2007 2:13 AM
To: Jennifer
Subject: Nate’s college forms

Hi Jen. Nate is working on his college applications. We started to talk about colleges last summer (the summer before his junior year) when we were on vacation in Hilton Head, South Carolina. Nate and I biked over to the only tiny book store in town and bought the one copy of the Fiske Guide to Colleges. I suggested that Nate make an Excel spread sheet listing the colleges he was considering and their characteristics, to organize his thinking. It was an opportunity for me to teach Nate an important lesson: many of life’s problems can be solved, or at least helped, by a good Excel spreadsheet.

Today Nate started to work on the nitty gritty of applying to college. The process at Nate’s school is very organized. They have all these forms and questionnaires for the students to fill out in preparation for a meeting with the college counselor. Students have to express their interests, talk about the subjects they enjoy, and describe what their extracurricular activities have been. The parents have to fill out forms too. Nate’s interests have been non-traditional, centering on teaching and community service.

Nate’s first exposure to working with kids was when he was in fifth grade, and his elementary school partnered each fifth grader to a first grader in their “buddy class.” The summer after eighth grade, Nate was a camp counselor for a group of 5-year-olds. I know the students adored him because one summer day a 5-year-old girl in his group recognized him as we were walking down the block and ran up to him to give him a hug. She hugged his knees, because they were as high as she could reach. The girl’s mom, who recognized Nate, said to her daughter, “Do you know who that is?” And the girl said, “That’s Nate, my counselor!” as if he were a rock star.

When Nate went to high school, he started tutoring third-graders in a bilingual Spanish/English public school on the West Side. One student drew a crayon picture of Nate as a superhero, complete with uniform, sword, and shield; it’s still hanging on Nate’s wall. Nate told us about a girl in the class who failed a math test. On one question in which she was asked to draw a triangle with vertices C, A, T, she had drawn a cat, not a triangle. Instead of berating her, Nate commented on the realism of her drawing, and asked, do you have a cat? What’s the cat’s name? What kind of cat is it? The girl was so engaged that when he started to explain the math to her, she listened.

During the summer after he finished ninth grade, Nate volunteered at a neighborhood soup kitchen that gave groceries to individuals and families in need. I thought it was just a summer gig, but he kept it up weekly throughout high school. He rose through the ranks and eventually ran the line for distributing food to the elderly and disabled. I was proud of his dedication. During the subsequent summer and school year, he also volunteered to teach in a program to help low-income New York City elementary school kids prepare to apply to challenging public or private high schools. A student of Nate’s became one of the first three students in the program to get admitted to a New York Independent School. Nate described these experiences in his college essay.

I like the way Nate writes: get your thoughts down on paper first and edit later. That’s a method Anne Lamott suggests in the chapter “Shitty First Drafts” in her book, Bird by Bird. I think getting any thoughts down on paper and then cleaning it up is a great strategy because it takes an impossible task (taking the blank page and filling it with a beautiful story) and breaks it into two smaller, easier tasks (writing the “shitty first draft,” and then editing work you’ve already written).

It wasn’t only Nate writing today—David and I had to fill out parent college forms. In addition to the name, rank, and serial number stuff, they asked us to specifically name where we would like him to apply to college. We wrote down that we wanted him to go where he wants to go, so he can be happy. I don’t understand pressuring your kids to go to the same school you did. Your kids are not you; they have their own tastes, interests, and abilities, and need to find schools that are right for them.

The college application process with Nate has taught me that parenting a teenager is like getting a bird to eat out of your hand. You love the bird; you want to feed the bird; you have only the bird's best interests at heart; you would never, ever hurt the bird. But if you make big sudden movements, the bird will fly away. You have to be casual. You stroll over, toss out a few seeds, and step back, like you don't even notice. Maybe he won't come at first. But then each day you put out a few more seeds and step back. Eventually he may come, and maybe at some point (if you're very lucky!) he'll take a seed before he bolts and then another and another and finally one day you'll feel the tickle of his beak in your hand before he flies away.

Love
Laura

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From: Laura
Sent: Tuesday, April 17, 2007 9:40 AM
To: Maureen
Subject: Athena

Hi Maureen. Question for you. There is an Athena gathering on Tues 4/24 from 5-7 pm in the Faculty Club. I am getting admitted for chemo that day. Can you lead this Athena? There are a few announcements to make, and basically I want someone to be there to make people feel welcome. Would this be OK?

Do you want to pop by here this morning (I'm in the women's office) and catch up for a few? I'm going to the Junior Faculty Council meeting at noon.

I’m doing OK. Intrathecal chemo Thursday, another admission Tuesday. Have finished seven of 18 doses of chemo—only 11 left. After the next admission is done, I'll have finished nine of 18 chemos—the halfway mark.

Love
Laura

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From: Laura
Sent: Thursday, April 19, 2007 2:08 AM
To: Jennifer
Subject: Seminar

Hi Jen. I loved what you said about how nobody calls you Jenny. It's like with Nate. When he was born, David and I named him Nathaniel, and figured we would call him by that name. But from the moment of his birth, he’s been such a thorough and complete Nate. We have a video of bringing him home from the hospital right after he was born. We carried him over the threshold and said, "Welcome home, Nathaniel." I don’t think we’ve called him Nathaniel since. I remember once when he was three, a friend’s mom called him “Nathaniel.” Nate said, "Don't call me Nathaniel. My name is Nate!" I was shocked that my three-year-old was so certain of his own identity. On rare occasions, some people call him Nathaniel, but he's mostly Nate to those of us who know him best.

I went to a fabulous career development seminar today. I wore a hat called the Tracy, which had a beige straw cloth square crown with a large down brim and muted green hand rolled roses. The seminar was jointly run by Cornell, Columbia, Sinai, Einstein, and NYU. Sometimes these seminars get a little whiney, but this one had the best speakers, and there were terrific people to meet.

A woman who is Director of Diversity at Columbia University spoke about diversity in the workplace, and was absolutely spectacular! She talked about how people (women and men) are looking for balance in their lives now, and it's no longer acceptable for many of them to work 24/7. I know this to be true. I also think we pay the consequences for our overwork. Relentless stress takes its toll on our psyches, bodies, spirits, and families.

We have to figure out a way to let people work but also let their work lives fit with the rest of their lives. Even if the goal is simply to get as much work as possible out of a person, it is better strategy to allow them to try to make the pieces fit. Life is a marathon, not a sprint. If you give all your steam on the first leg of the relay you'll have nothing left for the finale. I know that this is true, but how do we make it a reality when we are all such Type A personalities, want nothing short of perfection, and work in a cancer hospital where the stakes are high and mistakes can have lethal consequences?

Another amazing speaker at the conference was named Catherine J. Morrison, J.D. She gave two terrific sessions, a general lecture on negotiation and a seminar on conflict resolution. I especially liked her Frank Zappa quote: “Reality is an optional experience!” I’m going to follow up with her and see if she can give a session for our women faculty.

At the seminar, a female junior faculty member who took a grantwriting course sponsored by Women Faculty Affairs just found out that she was awarded her grant from the National Institutes of Health! Isn't that fantastic, wonderful news? This Women Faculty Affairs job is great—I get to play Point Guard. I feel like Teresa Weatherspoon of the New York Liberty in the WNBA: I get the ball to the Center, and she gets it into the net.

The seminar was held at Columbia University, which is gorgeous—a beautiful college campus right in the middle of New York City. After the seminar, I went to the college bookstore and bought a CD of classic Beatles tunes to put on my iPod. I’m still listening to a lot of music these days, especially when I'm in the hospital or getting chemo.

The only bad thing about today is that my vision is still blurry. It’s hard to see the traffic signs across the street. I never realized how scary it is to go out in the world unable to see.

Love
Laura