Chapter 10: Good News, Bad News

It’s OK to cry, but do so <20 minutes/day.

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From: Laura
Sent: Thursday, April 19, 2007 9:28 PM
To: Jennifer
Subject: Good news/bad news

Hi Jen. I got good news and bad news today. The good news is that my visual blurring is probably due to prednisone. The bad news is that my cerebrospinal fluid (CSF) won't clear, meaning it still has atypical lymphocytes. If these lymphocytes are lymphoma, and they can’t get rid of them, I probably won’t survive.

Now I'm going to go cry (less than 20 minutes), and then I'll sit at the lap top and write and feel better. There’s more to tell but I’m exhausted. I’ll write later.

Love
Laura

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From: Laura
Sent: Friday, April 20, 2007 1:28 AM
To: Jennifer
Subject: Highs and lows

Dearest Jen,

OK, I’m here to fill in the details about yesterday, which was the toughest day I’ve had yet. Emotional highs and lows. I'm exhausted thinking about it and it hurts to tell it, but it's going in the book, so I better go ahead.

It started with an appointment with the ophthalmologist. I told you I've been having blurry vision for about a week now, since I got the last dose of R-CHOP. My near vision is OK, but my distance vision is screwed up. When I went to the play on Sunday, Kevin Spacey was a fuzzy blur moving across the stage. Having blurry vision in the middle of Manhattan is scary. But the most terrifying thing about the blurry vision was thinking about what it could mean. The blurry vision may be from the prednisone, which changes the curvature of the lens of the eye (the lens gets swollen and puffy like everything else on steroids) or it could be from worsening lymphoma in the eyes.

I saw Jack, the ophthalmic oncology guy recommended by my neurologist. Jack is a man of few words, tall and thin, a little older than me, personable, and extremely knowledgeable. He tested both eyes, took measurements for a new prescription, and said that my blurry vision is because of the steroids. Decline in vision is apparently very common, particularly at the beginning of R-CHOP treatment, and usually stabilizes at a certain point. He saw no abnormal cells in my eyes, so it's NOT worsening ocular lymphoma. He wants me to come back on Monday so that he can recheck my vision, and if Monday’s prescription is stable from yesterday’s, he wants me to get new glasses.

I was thrilled about the good news. The ability to see (which lets me read and write) is essential for me. If I have to choose between seeing and hearing, I’d pick seeing, although I hope I won’t have to make that particular choice.

I had another intrathecal chemotherapy. I was starving and brought my lunch (a fresh salad that I made in the cafeteria) with me to eat while I was waiting for chemo. When Phil came in to tap the Omaya and I was eating a salad, he said, "You're eating before the chemo?" I told him that I was hungry, and that I also wanted him to see what I was having for lunch, because I knew he would not want to make me throw up and see it a second time. I told Phil that I had learned that if I throw up, it’s because he’s injecting too fast. I said that if that happens, I’m going to aim directly for his soft brown leather imported Italian shoes, and that when I take aim, I do not miss. Guess what? Phil injected slowly, and I didn't puke! Afterwards, I sat with Cindy and she held pressure on my head (which bled awhile) until I felt OK.

After we finished the intrathecal chemo, I had a serious discussion with Phil about the fact that my CSF (the cerebrospinal fluid surrounding the brain and spinal cord) has not cleared. Yesterday was my fifth dose of intrathecal methotrexate. Before each injection of intrathecal methotrexate, they take out some fluid (called “tapping the Omaya”) and send it to the lab so they can analyze the cells under the microscope. We had originally planned six doses of intrathecal chemo, and Phil had thought that the CSF would clear after the first dose or two. Unfortunately, my Omaya taps still show atypical lymphocytes. Phil’s sending the fluid from yesterday’s tap for fancy tests (including something called “flow cytometry”) to find out for sure whether these cells are lymphoma, but he suspects that they are. I should get those results on Monday.

If the flow cytometry is negative (meaning no lymphoma cells from the Omaya), then after my third cycle of chemo is done, they’re going to do a lumbar puncture (LP, or spinal tap). I asked Phil why we need the LP if he’s tapping the Omaya, and he said that the CSF around the brain (which is what you get in an Omaya tap) and the CSF around the spinal cord (which you get by doing an LP) mix with each other but sometimes the mixing is incomplete, and what you find in one might be different than what you find in the other. We’ll need to send the fluid from the LP for flow cytometry also, so that we can thoroughly analyze all of the CSF for the presence of lymphoma.

Phil is thinking about changing me to even stronger intrathecal chemo. I’m worried. The intrathecal methotrexate I’m on now is tough to take, and I'm concerned that if they hit me with more aggressive intrathecal chemo for worsening lymphoma, either the stronger chemo or the lymphoma or both will kill me. I’m trying to stay positive and I’m still hoping to blow this cancer thing out of the water, but I’m also terrified of dying.

After my appointment, Cindy took me home in a cab. On the way home, she said she was going to be in the city on Saturday, and asked if I wanted to meet at St. Patrick’s cathedral so we could light candles. It sounded like a comforting thing to do, so I said yes, and we made plans to meet there at 4 pm on Saturday.

When I got home, I was upset about two things. First, there is a chronic leak in our master bathroom, which has been overgrown with fungus for months. It could probably kill a healthy person, but with my low white blood cell count it is a death zone. Second, we have a beautiful terrace on which we planted flowers and trees a few years ago. For the past two summers, they’ve been doing construction on the terrace. They killed the plants, broke the glass window panes, moved away our table to make room for their equipment, and rendered the space unusable. Now that I’m sick, I want to sit out there when the weather is warm enough and bring my lap top and write.

David has spoken multiple times to the new super about these problems (the old super was a crook who took bribes and got fired). The new super keeps saying that he will take care of these things, but it hasn’t happened yet. So today I had enough. I intercommed the front desk and told them to send me the super, that I had to speak to him personally. Nate and Carmen were here. I told them to get ready for a scene.

Jesus, the new super, came. He is a quiet man in his 40’s, with a Spanish accent, medium build, and dark hair. I greeted him with no hat, bald. I told him that I have cancer, that I'm getting chemotherapy, and that there is a good chance that I’ll be dead within a year. I told him that I need him to get the terrace finished so that I can sit out there. I showed him every item on the terrace that needs to be fixed. Then I asked him to go into our disgusting fungemic bathroom and told him that the doctors said that this could kill me if it is not corrected immediately. I told him that if I died because of the fungus in the bathroom, he was responsible for my children losing their mother. I screamed, I cried, and I begged him in the name of God to help me.

By the time I was finished, poor Jesus was a shaking shell of a human being. This quiet God-fearing gentleman had a hysterical bald woman on his hands. I must have lit a fire under him. He made a bunch of calls; he promised he would take care of it; he gave me a hug and kissed my hand; and he said he goes to church every day and will pray for me. He gave me his cell phone number and told me I could call him any time of the day or night. And then he left, but he must have been upset, because he left his wallet in our apartment and had to come back to get it.

After the scene with Jesus, Emma came home. I had to have a heart to heart talk with Emma about a bunch of things. I've been showering in her bathroom in the mornings because I’ve been afraid to go in the death zone of our master bathroom. Sometimes the sound of my showering wakes her up. This morning I couldn't find the hat I wanted to wear, and I looked in her room, and I kept knocking on her door to come in, which interrupted her sleep. And she hadn't slept well the night before. I knew she was irritated, but my kids don’t want to be mad at me these days because I’m sick. I apologized for interrupting Emma’s privacy to look for the hat. I told her I won’t leave my hats in her room anymore. Together, we made a plan for when I can use her shower without disturbing her. I told her that it’s OK for her to be upset, and that I was glad we could talk about what’s been going on.

David came home. Jesus had called him, and David wanted to know what had happened. I explained the scene, after which David came up with all sorts of reasons why the plan of fixing the bathroom couldn't work. The Super had asked Carmen to clean out the bathroom, and Carmen started saying that she would do it in the morning. And then I lost it. David, Carmen, Emma, and I were in the family room, and Nate was in the living room at the table, working with his SAT II tutor. I started to scream.

I screamed that I needed them to do what I asked exactly the way I wanted. When Carmen asked me why I was getting so upset, I screamed "BECAUSE I'M SCARED I'M GOING TO DIE! IS THAT SO HARD TO UNDERSTAND?" I was told today that the CSF is not clearing, and I know that if the CSF doesn’t clear, I won’t live. I’m making the best effort I can to beat this thing, but ultimately whether I survive is beyond my control. Although there is a lot about which I can’t call the shots, I’d like to control the few things I can. I want to sit on the terrace. I want a bathroom that is free of fungus. I want the people I love to help make that happen, and not tell me a thousand reasons why they can't. I hadn't even realized that was what made me so upset, and once I did and told them, they understood.

Poor Nate. He overheard my scream about "I'M SCARED I'M GOING TO DIE" in the living room with his tutor. Apparently he looked up sweetly at her and said in a calm voice, "I think we're done." She initially thought the screaming was from the neighbors, but apparently I screamed again, and then she realized, “The call is coming from inside the house.” Nate is so funny when he tells the story.

I'm not scared of dying for me; I don't want to leave David and Nate and Emma. They deserve more.

Love
Laura