Chapter 3: Treatment Begins

Keep your sense of humor. Discover your inner Zen.
Bring your own anesthesia.

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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

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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

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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

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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

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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

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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

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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

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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