Chapter 6: First Admission

Get doctors you trust, and do what they tell you.

____________________


From: Laura
Sent: Thursday, March 29, 2007 11:59 PM
To: Nate
Subject: Your visit

Hi Nate. Thanks so much for coming to visit me on my first evening in the hospital. I take it as a good sign that there was a 5-episode marathon of The Office on TV.

I’m delighted about the SAT. What a relief to know that you’re done with that now. It's a huge weight off your shoulders, and one that you've been carrying around for months. Let it feel lighter—it is!

The college thing will sort itself out. It’s great that you’re figuring out what you want in a school. You'll have a lot more information about all the schools by the time you make a choice.

Tomorrow is Dad's actual 50th birthday—can you make sure to wish him a happy birthday from me first thing in the morning, and give my love to Emma?

I love you, Nate.

Love
Mom

____________________


From: Laura
Sent: Friday, March 30, 2007 12:49 AM
To: Jennifer
Subject: First hospital admission

Hi Jen. It was so wonderful of you to call and wish me luck the night before I was admitted. I was a little nervous about being hospitalized. I thought I was acting pretty cool about the whole thing, but you can see right through me, as usual. It just shows your insight into the human psyche (or at least into mine!). I like your suggestion that if I’m scared, I should just listen to Bach.

Let me tell you today’s chemo story. We got in at 9 am Thursday morning to admitting, and a woman named Sandy checked me in. We were supposed to wait for Escort but they took forever—now there's a shock!—so David and I jumped ship and went up to the eighth floor ourselves (I promised the woman in admitting that we would claim we snuck out and would never let on that she knew we were leaving). David helped me settle into the room here. We put my iPod and cell phone on a little table beside the bed, on their respective chargers. The room had a bed on which I spread a fuzzy green blanket from home, window with view, TV, DVD player, closet, private bathroom, and working hospital computer. I take the computer as definitive proof of the existence of God.

The floor I’m on, M8, is the Bone Marrow Transplant (BMT) floor. Although I’m not getting a BMT now (that’s plan B if the chemo is unsuccessful), sometimes lymphoma patients who are not getting transplants stay on this floor. Every patient gets a single room for two reasons. First, BMT patients are susceptible to infection, so they like to keep them isolated. Second, because the BMT patients are often here for long periods of time, sometimes up to two months or longer, the rooms are often spacious enough so that a family member can sleep over. Another thing that’s good about being here is that if I do end up needing a BMT eventually, at least I’ll be familiar with where it’s going to happen.

The nurse, Trish, accessed the port, which she did fairly painlessly, using the spray. We started with four hours of hydration using a salt solution (normal saline with bicarbonate), with the goal of making the urine less acidic and more alkaline so that the methotrexate won't crystallize in the kidneys. They check the pH, which is a measure of urine acidity, before giving the methotrexate—the higher the pH, the less acidic and the more alkaline, and you want the urine to be alkaline, meaning a pH of 7.5 or higher. Mine was 8 (I've always been an overachiever). When the urine is alkalinized, they run in the methotrexate, a large bag of ugly yellow stuff.

One of the main complications of the methotrexate is painful ulcers in your gastrointestinal tract anywhere from the mouth (north) to the derriere (south). Trish told me that the best way to prevent those ulcers was by rinsing my mouth out frequently with a mouthwash called Biotene or with a bicarbonate wash. I did that every hour while I was awake.
The night nurse, Jonathan, was very nice and knew what he was doing. I had no problems or reactions, and I've been peeing up a storm—the goal is 150 cc/hr and I am doing far better. They'll hydrate me more tonight and check another urine pH. If the pH is too low, meaning it’s acidic, I'll need to take oral bicarbonate.

Aimee, the ultrasound technologist from 64th Street, came to visit today with a card about how the Lord is walking by my side. When people ask what they can do to help, I say without hesitation, “Pray for me.” I can't tell you how comforting it is to have people from all different religions praying for me. I have Jews writing my name on a piece of paper and sticking it in the Wailing Wall in Jerusalem and former radiology trainees in Croatia making pilgrimages. A dear friend of mine in New Orleans sent me a small wooden bracelet with pictures of the saints. I grew up in a reformed Jewish household and was never much of a believer, but somehow I feel that this positive energy in the universe channeled in my direction has got to help. And maybe there's more out there than we think.

I love you very much. I know you will have an incredible son. It is so great to have a boy and a girl!

Love
Laura

____________________


From: Laura
Sent: Friday, March 30, 2007 1:19 AM
To: David
Subject: Happy Birthday!

Dearest David

(Imagine wild music in the background and a strip tease)

Happy birthday to you
Happy birthday to you
Happy birthday dear David
Happy birthday to you

Are you 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25,26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48,49..........50? (You can't be 50; to me we will always be college students, making love in a carrel in Baker library.)

I think our boy and girl will both be OK. I love you today and every day.

Love
Laura

____________________


From: Laura
Sent: Friday, March 30, 2007 2:23 AM
To: Sam
Subject: Update, and question

Hi Sam. Just an update and a question. I tolerated the first IV R-CHOP without a hitch. I've had three courses of the intrathecal methotrexate. My first two intrathecal chemos were injected fast and I puked my guts out, but the third was injected much more slowly and it went fine. Does injecting the intrathecal chemo slowly decrease the likelihood of nausea and vomiting?

Best wishes
Laura

____________________


From: Laura
Sent: Friday, March 30, 2007 2:37 AM
To: Cindy
Subject: St. Patrick's cathedral

Hi Cindy. Can I come with you one day soon to St. Patrick's cathedral, where you’ve been lighting candles? I've never been. Maybe one day next week?

Am I allowed to light a candle for myself, or is that considered "self-referral"? 

Love
Laura

____________________


From: Laura
Sent: Saturday, March 31, 2007 1:23 AM
To: Jennifer
Subject: More stories from inside

Hi Jen. Another day, and so many stories. I can't believe I was just admitted two days ago—it feels like a lifetime has gone by.

This morning there was a risk management lecture in the Department of Medicine Grand Rounds in Hoffman from 8-9 am. The Departmental secretary had emailed us that we should try to go to this one if possible; otherwise the Radiology one is in August, which is pretty far away. So I asked permission to go to the lecture, which was an elevator ride downstairs from M8. The doc covering the lymphoma service said it was OK, so I went with face mask, IV pole, and all. It was funny how people responded—most people already seemed to know; some looked right through me; and some were terrific, as I would have expected. I sat with a couple of friends from Radiology. The lecture wasn’t great. A malpractice lawyer spoke, and she was disorganized and didn't say much. But it was good to get off the floor for awhile.

Did you know that when you're an inpatient at Memorial, you're entitled to a massage from Integrative Medicine? I had Reflexology, which is a massage for your hands and feet. If the computer in the room didn't convince me of Divine Intervention, the Reflexology did. If it weren’t for the chemo, my room would be a prime vacation spot!

David and Nate came to see me yesterday. It was David’s 50th birthday; he looked exhausted. Nate was in a good mood. I think he feels better about applying to college now that he’s visited a school. Even if he decides not to apply to Cornell, our trip there seems to have demystified the process. I had other visitors yesterday also, including Cindy, who brought me frozen yogurt.

I’m not sleeping much, but I’m getting a lot of writing done. Sam agrees that the third intrathecal methotrexate was easier than the first two because the oncologist injected it very slowly the third time. Apparently, when you inject it too fast, once the chemo hits the fourth ventricle it tickles the vomiting center in your brain and you puke. I'm going to ask the oncologist to inject it more slowly in the future.

Looks like they're shooting for a possible Monday discharge, but it depends on the methotrexate level. As Phil said, "It's all about urination now." I have been exceeding expectations in the urine output department. They want 150 cc/hr. I laugh at their 150 cc/hr, and raise it by 50 cc/hr!!

I’ve been listening to Bach, as you suggested. I listened on the iPod not only to Yo Yo Ma playing the Bach Unaccompanied Cello Suite in G Major (one of my favorite pieces of all time), but also to the other five unaccompanied cello suites, to Hilary Hahn playing Bach partitas for solo violin, and to Glenn Gould playing the Bach Two- and Three-Part Inventions. You’re right—Bach has a way of making order and beauty out of turbulence and chaos.

Love
Laura

____________________


From: Laura
Sent: Saturday, March 31, 2007 6:07 AM
To: Jennifer
Subject: Saturday morning

Hi J—Saturday morning, almost 6 o'clock. Didn’t sleep much last night. The chemo part is done; the rest is just the leucovorin “chaser” and fluids. That will help lower the methotrexate level until it’s low enough that it’s safe to go home.

My hats arrived at the house last week (not a moment too soon), but in the hospital I’ve just been wearing the Monk cap that Cindy gave me. I can’t believe how Cindy has been there for me during my treatment. What a silver lining.

Charlie, who works in the file room of our outpatient breast center, is going to visit me today and bring home-made soup. He is a fantastic cook. When I was a resident taking weekend call and Charlie worked in the file room at the hospital, he used to bring in these savory lunches he had cooked with rice and chicken and shrimp and some kind of soup with a tomato base and a secret combination of spices. He also used to bring in fresh salad with these amazing tomatoes that he grew in his garden. All of the residents wanted to work on the weekends when Charlie was there.

Emma gets home from Paris today and will come to see me tomorrow. I can’t wait to see her and hear all about the spring trip.

Got to go—they want another urine sample. There's a Murphy's law (you know, “whatever can go wrong, will”) that says the nurses' aide always dumps the urine before they get to send it to the lab. I’m swigging the Gatorade now.

Love
Laura

____________________


From: Laura
Sent: Sunday, April 1, 2007 1:44 AM
To: Jennifer
Subject: Hair

Hi Jen. David picked Emma up at the Newark Airport last night, and I get to see her later today.

My hair is falling out. It’s so bizarre. You know how you brush your hair, and when you get to the bottom it stops? Well, now it just keeps going, and all the hair comes out in the brush. I know a lot of women who shaved their heads when that started happening, but I cling to the hope that a curl or two will hang on for dear life. Oh well, hair grows back. David said to me, "In September, the cancer will be gone, and so will your hair, and I couldn't care less about the hair."

Nate also helped me feel better about losing my hair. One of our family’s favorite TV shows is West Wing, the Sorkin drama about a fictitious Democratic President named Josiah Bartlett and his White House staffers. Early in the campaign, Bartlett keeps asking, “What’s next?” The staffers ask Leo, who has known Bartlett for a long time and will later become his Chief of Staff, what Bartlett means by that. Leo explains that Bartlett is saying that he understands the situation, has dealt with it, and is ready to move on. Nate reassured me that losing my hair means that the chemo is working, and that hair grows back. He added, “It’s OK, Mom. You can handle it. Do what Bartlett would do. Just ask, what’s next?”

Love
Laura

____________________


From: Laura
Sent: Sunday, April 1, 2007 7:49 PM
To: Jennifer
Subject: Laps and family visits

Dearest Jen,

Today was a wonderful day. After I emailed you, I put on my shoes and a mask and went strolling multiple laps around the nurses' station with my IV pole. The only problem with doing laps is that I have to unplug the IV pole from the wall to do it, and since the batteries are low the pump starts beeping and you have to hit “silence” every couple of minutes. But that’s a small price to pay for the freedom to roam.

The bone marrow transplant patients on this floor often aren’t allowed to leave their rooms. It’s such a luxury to be able to walk around. M8 was recently redecorated; the hallway walls are covered with large nature photos of trees, flowers, different seasons, sun, snow, and birds in the sky. The pictures (selected by Holly, the floor’s wonderful Nurse Manager) make you feel like there are windows looking out on a rustic landscape. There is also a small room called the family pantry where they have a fridge and freezer that patients and their families can use. They have coffee, tea, water, and juice there too. This morning I "went out for breakfast"—I lapped around the nurses’ station and went to the family pantry and had some delicious decaf with skim milk.

David and Emma came in the early afternoon. Emma was wearing a stunning pair of turquoise shoes that she bought on the street in Paris. They were perfect on her—they even showed toe cleavage (this is the latest thing—what a term!). She bought me a necklace with an antique chain and stones in muted colors as well as a little card from Paris with a hand-painted picture of a Parisian café. I have a bulletin board with tacks in my room, and she wrote “Emma” in the tacks on the bulletin board. David and Emma stayed about an hour and a half, and Emma told us all about her trip. After they left, I liked looking at the bulletin board, and seeing the “Emma” design—it made me feel like she was still there.

Nate came later. We had a quiet visit. Sometimes we didn't talk; I just read the paper while he was surfing the net on the computer. We walked 7 laps around the nurses' station together before he went home.

The Op Ed page of the Sunday Times featured a piece by Dr. Harold Varmus, the Nobel prize-winning scientist who is the President of Memorial, in which he said that we are winning the war against cancer. I always wanted to win the war on cancer, but for some reason I’m particularly passionate about it now.

Love
Laura



From: Laura
Sent: Monday, April 2, 2007 12:10 AM
To: Nate
Subject: Fro yo

Hi Nate. Thank you for coming to visit me, and bringing the frozen yogurt (“fro yo”)! I just took my midnight "constitutional" and got some fro yo in the family pantry—I finished the one that was almost empty and got a good healthy start on the one you brought. Thanks for providing my midnight snack. Now I'm listening to Stevie Wonder singing "Ribbon in the Sky," another beautiful song. I only did another one lap instead of seven more this evening, but it was good.

Love to Dad and Emma.

Love
Mom

____________________


From: Laura
Sent: Monday, April 2, 2007 1:36 AM
To: Frances
Subject: Prayer group

Hi Frances. Please thank your prayer group for the beautiful prayer they sent me, called “I Asked God.”

I asked God to take away my pain. God said, No.
It is not for me to take away, but for you to give it up.
I asked God to make my handicapped child whole. God said, No.
His spirit is whole, his body is only temporary.
I asked God to grant me patience. God said, No.
Patience is a byproduct of tribulations; it isn't granted, it is learned.
I asked God to give me happiness. God said, No.
I give you blessings. Happiness is up to you.
I asked God to spare me pain. God said, No.
Suffering draws you apart from worldly cares and brings you closer to Me.
I asked God to make my spirit grow. God said, No.
You must grow on your own, but I will prune you to make you fruitful.
I asked God for all things that I might enjoy life. God said, No.
I gave you life, so that you may enjoy all things.
I asked God to help me love others, as much as He loves me.
God said Ahhhh, finally you have the idea.

Love
Laura

____________________


From: Laura
Sent: Monday, April 2, 2007 7:21 AM
To: David
Subject: Coming home

Hi Babe. Just a note to thank you for bringing your button-down green flannel shirt for me to wear this morning. It makes me feel protected by you. It’s much easier to maneuver a button-down shirt than a pullover shirt when I’m hooked up to an IV—to get out of the pullover, I actually have to push it down to the floor and step out of it, and step into the next shirt and pull it up. And there’s another advantage to the button-down—it has a pocket for me to put the iPod in! I walked multiple laps around the nurses’ station this morning and then "went out for coffee" to the Family Pantry. Apparently 14 laps is a mile (a patient on 12 clocked it), so I can even quantify my exercise—I walked more than a mile today!

I slept well last night and took a good shower this morning. They're still giving me the leukovorin "rescue." It's my favorite part of the chemo. I'd much rather have someone give me a "rescue" than a "CHOP." They really have to rethink the names of these chemo regimens—“CHOP” is bad enough, but apparently there’s another one called “ICE.” What kind of message does that send? Anyway, I just called the cafeteria (euphemistically referred to as “room service”) to order breakfast, and they picked up the phone right away. Scrambled eggs and toast and decaf and a fresh orange and a banana.

They run the methotrexate level at noon, so it probably won't be back until 2. Do you want me to call you when they are actually discharging me? It’ll probably be sometime between 2 and 5 pm. I really want to go home today, so before they take my temperature, I will suck on ice chips to make sure there is no fever (only kidding—although it’s tempting).

I got an email from a former Croatian breast imaging trainee. He told me to “beat that crazy lymphocyte!”

I love you.

Love
Laura