Archive for May, 2013

Getting the Treatment

May 30, 2013

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A couple of weeks back, I taught a class at my synagogue about prayer without God. We discussed the Mi Sheberach, the healing prayer. How can it be meaningful to ask an entity you consider imaginary to take care of a real person with an all-too-real illness? The question sparked some lively discussion. And it really hit home with me.

At the beginning of April, I was diagnosed with polycythemia vera — a congenital condition in which the body produces too many red blood cells. I began my treatments right away, giving up a pint of blood once a week. Some of these blood-lettings have gone perfectly smoothly—a gentle poke of the needle, twenty minutes in the chair, and I’m done. Other sessions have been more problematic—hardened veins, thick blood, operator error. Between procedures, I felt washed out for a few days, and have watched sores and bruises develop and disappear on my arms. I have also seen my hemoglobin count inch down, from its high starting point of just over 19, towards its target, somewhere between 14 and 15.

I didn’t talk about my condition in class. But it sure was on my mind. And both the class and my condition were on my mind the next time I was in synagogue and the rabbi invited congregants to come forward for the Mi Sheberach and mention the names of friends and loved ones who were ill.

I’m pretty sure my name wasn’t mentioned. I’m pretty sure I didn’t want it to be. But standing at my pew, I decided to pray for myself, following the advice I had offered in class.

I started by bringing to mind the people I have shared waiting rooms and elevators and treatment rooms with at the different cancer centers where I have seen various hematologists. I always feel a bit sheepish, accepting the extra kindness I’m offered at these places, even though I’m dealing with so much less than so many other people there.

I pictured the woman in the wheelchair, weeping in the arms of her grown son. The young man with skeletal limbs. The kid as pale as parchment leaning on his walker as he chatted with his mother, his breath shallow and labored, his voice muffled by his surgical mask. The dazed expressions of patients new to their conditions. The turbans and hats and wigs. I don’t know any of these people’s names, or very much at all about what they’re going through. But I pictured them in turn, and wished them well.

Next, I thought about the doctors who diagnosed me and prescribed my treatment, who monitor my progress and answer my questions. The nurses who carry out the actual blood-letting. The woman in the blood labs. The one who checks my weight and blood pressure. The one who brings around juice and snacks. The receptionists who check me in and snap the ID around my wrist. The valets who park my car.

By the time the Mi Sheberach had ended, I felt myself surrounded by a network of people whose days are devoted to caring for those who are ill, providing cures or health when it’s possible, and when it’s not, offering comfort. I felt profoundly comforted, and more spiritually uplifted than I had in a long time.

On Wednesday I drove back to the hospital for what would be my last treatment before our long-planned trip to Slovenia and Austria. My doctor would be stopping by the treatment room to give me the final go-ahead.

I left my car with the valet. Checked in with the receptionist. Went to the blood lab for my weekly test. Had my weight and blood pressure measured. At each step in the now familiar routine, I remembered my Mi Sheberach.

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I settled into my treatment room to wait for the lab results. Kate, the same compassionate, highly competent nurse who has been drawing my blood for the last six weeks, topped off my water bottle .

Fifteen minutes later, my doctor arrived. He perched on the window sill, and Kate pulled up a chair. My labs had come back and my hemoglobin was 14. “We’re not going to take any blood today,” my doctor said. “The treatment worked. I told you Kate could do it!”

This is hardly the end of it. I’ll go back in two weeks. I expect that my numbers will have inched back up, and I’ll need to have my blood drawn. After that I’ll be getting regular blood tests, and phlebotomies as needed.

But this respite feels like a gift. This time tomorrow, I’ll be on my way to the airport.

Prayer Without God

May 16, 2013

IMG_6567Saturday morning often finds me in synagogue. I like the minor-key melodies, the music of the Hebrew, the ancient echoes of the archaic liturgy. I go for the comforts of ritual and community, and the subtle dramas that unfold across the seasons. Setting my life aside for those hours restores me, even as I spend much of that time wondering why I’m there.

What’s the point of praying when you don’t believe in God? That was the focus of a class I taught at my synagogue Tuesday night.

We began by considering the Amidah, a silent prayer that follows the form of a subject petitioning a ruler to grant wisdom, forgiveness, justice, and other good things. As a private meditation, the Amidah encourages personal interpretation. The praying atheist can make sense of it by turning it inward. Rather than asking an external power for forgiveness she might consider how to make right wrongs she has done, or cultivate her capacity to forgive others.

I closed the session by talking about retooling traditional texts to reflect one’s beliefs. I gave the example of the Sheva Brachot – the Seven Blessings at the center of the Jewish wedding – which we reinterpreted when my daughter got married. Rather than saying blessed be God for creating man in his image, we said blessed be compassion, graciousness, patience, kindness and truth—attributes the Bible ascribes to God, and values a praying atheist might strive for.

The prayer that generated the most discussion in class was the Mi Sheberach, the healing prayer. When it’s time to say the Mi Sheberach at my synagogue here in Providence, the rabbi invites anyone with a friend or relative who is ill to come forward and offer their name. Between a dozen and thirty people quietly walk to the front of the room and form a line facing the congregation. The cantor chants in Hebrew, May the One who blessed our ancestors—Abraham, Isaac, and Jacob, Sarah, Rebecca, Rachel, and Leah—bless and heal the one who is ill. There he pauses, as the rabbi walks from person to person, and each one inserts a name.

When the list is complete the cantor finishes the prayer, asking God to show compassion upon those who are ill, to restore, strengthen and enliven them, and to send them a complete healing—not just of the body, but also of the soul. Of all the prayers the atheist in me has trouble saying, the Mi Sheberach bothers me most. It just feels so, well, superstitious, to make such a specific request, about specific people who are not even there to hear it. And it gets worse when you consider the formulation used to name those who are ill. In just about all other contexts, my Hebrew name is Ruth daughter of Isaac (my father’s Hebrew name.) In the Mi Sheberach, I would be referred to as the daughter of my mother.

Why? One explanation is that it’s best to pray using the most definite facts available, and maternity is easier to verify than paternity. Another explanation is that the person who needs healing requires zchoot—merit—either by their own deeds or their parents’, and mothers are likely to have more zchoot than men, for reasons I won’t go into here.

Both these explanations point out problems, which Harold Kushner describes vividly in When Bad Things Happen to Good People. “Do I…really believe in a God who has the power to cure malignancies and influence the outcome of surgery, and will do that only if the right person recites the right words in the right language? And will God let a person die because a stranger, praying on her behalf, got some of the words wrong? Who among us could respect or worship a God whose implicit message was ‘I could have made your mother healthy again, but you didn’t plead and grovel enough’?”

These questions should trouble even committed theists. They certainly trouble me. But what troubles me more is how many intelligent, reasonable people, including respected physicians, participate in the Mi Shiberach. What troubles me most is that I do it, too. Help me figure out why I do it, I asked my class.

Because you’re feeling powerless, and feels like doing something,” someone pointed out.

“It reminds you to think about the person, and to consider what you might be able to do for them,” someone else said.

“The spectacle of all those people standing up there, worrying about loved ones who are ill, makes the whole congregation think about the fact that people need healing, and reminds us of the need for compassion,” a third person said.

I wrapped up the discussion with a third explanation I have seen for why we use the mother’s name in the prayer. We use it because the prayer addresses the Shechinah, God’s caring, nurturing and sustaining aspect. The mother’s name is also connected to the concept of mercy, which in Hebrew, rachamim, has the same root as womb. A theist praying the Mi Sheberach might picture God as a caring mother. An atheist might turn the prayer inward, and focus on his own role as nurturer and sustainer.

As a parent, I have plenty of experience soothing hurts. The connection between mothering and sustaining was most obvious when I breastfed my children. Anyone who has done this knows the sensation of “let down,” the chemical tingle as the milk begins to flow. It can be triggered unexpectedly, such as when you hear someone else’s baby crying. Even after I stopped nursing, I felt that tingling again from time to time. But it grew less and less frequent. Then, ten years after I weaned my younger child, my mother became ill. I called her hospital room, heard the helplessness in her voice, and felt my milk letting down. Nursing is nursing. The next time I feel moved to pray the Mi Sheberach, I’ll remember that moment.

Nursing My Diagnosis

May 9, 2013

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“Are you writing this down?” my mother used to say, when I described something strange and irksome that had happened to me. My husband has since picked up the chorus. And when another writer tells me about some disagreeable experience, I have been known to say, “It’s all material.”

I have been using this line on myself a lot lately, since I received the surprise of my bizarre diagnosis. It’s been a lot to deal with, physically and emotionally. But it also offers a lot of material.

For example, phlebotomists and nurses. I have been spending a lot of time with both, the phlebotomists as they draw relatively small amounts of my blood for lab tests, and the nurses as they draw a pint each week—standard treatment for my condition. Because I want to distract myself from those unpleasant needles, I like to talk during these procedures. And because as a writer I’m always eager to poke my nose in other people’s business, I mine these moments for whatever slices of human drama or character-defining details I’m able to extract. Because who knows when I might be able to use them?

So far, I have filed away:

–The nurse who claims, as she’s sticking me for my very first blood drawing, that she’s afraid of needles.

–The nurse whose husband complains that she spends too much on the novelty cakes she bakes for her friends’ celebrations.

–The two nurses at the office where they put in my PICC Line. One at my head and one at my feet, they roll my gurney to the operating room, a route that takes us down narrow hallways, around tight corners and through just-wide-enough doors. Throughout the journey, they gossip as if I’m not there—only, because I am, they talk around all the actual content.

“I’m not surprised she didn’t come back,” says the nurse at my head.

“Yeah? How come?” asks the nurse at my feet.

“Because remember what happened?”

“Oh, yeah.”

“Right?”

“Right.”

“Sounds like a great story,” I pipe up from my prone position. “Wish I could hear the details.”

I’m not trying to scold them; I really do want to hear more. But they shut up.

–The nurse who comes to my home to change the dressing on my PICC line, dropping by on Saturday afternoon, between one son’s karate class and another son’s violin lesson. She’s a slight, sweet-faced woman, who talks to me tenderly and handles my wounded arm as gently as anyone has ever handled any part of me.

When I tell her that my condition is interfering with my running, she says, “You should take up kickboxing. I love it.”

“What do you love about it?” I ask.

“It’s a perfect workout,” she says. “Cardio and strength-training combined. Plus you get to hit people and you don’t get in trouble.”

–The phlebotomist in Boston who plays Gospel music and never cracks a smile. When I ask her to spare my big veins for my next blood-letting, she says, “If you’re doing this for the long-term they’ll probably put in a port, anyway.”

–The phlebotomist in Providence who smiles constantly. When I ask her to spare my big veins for my next blood-letting, she nods sympathetically.

“I’ll just use a butterfly,” she says.

As the tube fills, she says she likes the way my purple cardigan looks with my yellow t-shirt. “I wouldn’t have thought of putting those colors together, but it works!” she says. “I’m always wearing purple with green. My husband says they don’t go, but I like them.”

“They’re Mardi Gras colors,” I tell her. “It’s your inner party girl coming out.”

–The highly competent nurse who has been drawing a pint of my blood each week for the last three weeks, and who I hope will draw all my pints forevermore. She is kind, careful, competent, and so relentlessly serious that I feel compelled to make wisecracks, and chalk up a personal victory each time she cracks a smile.

“That’s where my garden attacked me,” I tell her as we survey my inner arms on my third visit.

Her face lights up. “You garden?” she asks. “Flowers or vegetables?”

I tell her about my salad greens and radishes, and she talks about her raised beds, her kale that wintered over, the volunteer arugula that sprouts in her compost, her favorite heirloom tomatoes, and this year’s asparagus.

“The first time I saw asparagus growing I thought it was a joke,” I say. “It’s like a kid’s drawing of how vegetables grow.”

“I know,” she says, laughing. “Right?”


Let It Bleed

May 3, 2013

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I’m on the operating table at the Rhode Island Vascular Institute, getting a Peripherally Inserted Central Catheter (“PICC line” to its friends), installed in my left arm. It’s a quick procedure, done under local anesthesia, and Dr. A chats reassuringly as he works. I need reassuring. I’m a queasy wimp around needles and flesh. Especially my flesh.

I’m doing pretty well, though, until Dr. A says, “This vein isn’t cooperating. I’m going to have to go in again.”

“Okay,” I agree. As if I have a choice.

“Getting tense?” he asks.

“A little.”

“Do you want to talk?”

“Okay.”

“What do you want to talk about?”

“I don’t know.”

“Do you want to talk about Boston?”

“Okay.”

It’s Friday morning, April 19. By “Boston,” Dr. A doesn’t mean Red Sox or Sam Adams or Faneuil Hall. He means the surreal situation unfolding as we speak—the whole area under lockdown as police search for the surviving suspect of the Boston Marathon bombing, a man described as, “armed and dangerous.”

“My daughter lives in Cambridge,” I say.

Sophie and her husband Henry are graduate students at MIT. The security guard shot dead last night died outside Sophie’s building. On the phone this morning, she sounded rattled and exhausted. She and Henry had been up until three.

“Crazy stuff,” the nurse says.

“Really crazy,” says Dr A.

And the procedure is over.

I’m here because I have polycythemia vera—my body produces too many red cells. (I wrote about it here.) Standard treatment is to withdraw a pint of blood once or twice a week until the blood count reaches the right level, and then continue to phlebotomize several times a year for the rest of your life.

“You’re a textbook case,” my hematologist said when she diagnosed me, ten days ago. I felt reassured.

The following Tuesday, I had my first phlebotomy.

“I’ll be your nurse every time,” Nurse B reassured me as she led me to my room in the infusion center. “I’m the only one here who does these.” One quick stick and 20 minutes later, she had collected her pint.

I felt the difference right away—less itchy after my shower, not as flushed in the face, fewer of those weird pulsing sensations rippling through my body as I lay awake at night.

Round Two, that Friday, took two sticks and 40 minutes. But that was okay. Nurse B and I discussed local restaurants. My hematologist dropped by, brought me more water, and hung around chatting until I was done.

I felt washed out for a few days. But my symptoms continued to improve.

Round Three got postponed from Tuesday to Wednesday, because Nurse B was sick. When I showed up on Wednesday, she was still out.

“I’ve done this before,” Nurse R reassured me as she settled me into my chair.

I was not reassured—and rightfully so. Three sticks and one hour later, Nurse R apologized profusely and sent me on my way. Both my arms were bruised, and she had extracted less than a tablespoon.

Driving home, I could already feel my face getting flushed. That night, the pulsing was worse than ever, compounded by heart palpations.

“It could just be panic,” David reassured me, and the palpations gradually diminished.

On Thursday, my hematologist called. “Your blood is so thick,” she said. “It’s really hard to get it out. The only thing I can think of is to put in a PICC line.”

Installing it would be no big deal, she said. They would simply thread a tiny tube through my vein. A cap on my arm would keep my vein permanently accessible. And once we’d gotten my blood count down, they would just pull the thing out. No more getting stuck! No more failed phlebotomies! From now on, I thought, blood-letting would be as easy as charging a laptop.

“What are the drawbacks?” I thought to ask.

“You can’t swim while it’s in,” she said.

Or shower, says the nurse at RIVI—unless I cover it with a special rubber sleeve or Saran Wrap, say, or the wrapper from the Providence Journal and Scotch tape. I absolutely do not want to get the bandages wet, because moisture breeds bacteria, and the catheter goes straight to my heart. Call the office if there’s swelling, she instructs, measuring my arm’s circumference just above the bandage. Call if the wound keeps bleeding. Call if it still hurts after a week. A nurse will come to my home tomorrow to change the dressing and teach me how to flush the line. She gives me a stretchy fishnet cuff to hold the cap (which turns out to be a two-inch nozzle) snuggled in place.

This PICC Line is a bigger deal more than I expected. But it’s worth it, because from now on, my phlebotomies will be a breeze.

The TV in the waiting room is tuned to Fox News. “Let’s see how those gun control people feel after this bombing,” someone in saying. I collect David and we drive around the corner to the hematologist’s office, where the TV is tuned to NBC. “They have defamed the entire Chechen ethnicity!” the Tsarnaev brothers’ uncle is telling reporters.

We watch that same footage over and over again as we wait for my name to be called. When someone finally comes to fetch me, it’s Nurse R again.

“B is still out?” I ask.

She smiles apologetically. “I’m trying to reach someone who can tell me how to draw blood through the PICC line,” she says. “I didn’t want you think we’d forgotten you.”

I have a roommate today, a woman young enough to be my daughter. She has the TV tuned to MSNBC, but has turned off the sound. The screen shows the face of Dzhokhar Tsarnaev—disturbingly young and surreally innocent.

“Good looking kid,” I say.

“This whole thing is so crazy,” says my roommate.

She tells us about her illness and her job. Today is her second-to-last treatment, and a steady stream of well-wishers come to see her. The snack lady brings around juice, sandwiches and chips. More visitors crowd into the tiny room. I’m still waiting for my phlebotomy. Every now and then, Nurse R stops by and says, “Still working on it.”

My hematologist arrives. “I’ve got some calls out,” she tells me.

A second hematologist comes in. He shakes his head.

The problem has to do with vacuums. Standard phlebotomy needles have them, and that’s what starts the blood off. What we need is a plumber. Or a syringe, my hematologist suggests.

Nurse R is dubious. “We’d have to constantly pull on it,” she says.

“I’ll do it,” my hematologist tells her.

And she does. For the greater part of an hour she sits beside me, slowly drawing back on the plunger of one after another 65-cc syringe, and tossing the filled syringes into the trash can labeled “Blood Products.” We talk about our children. David’s work. The viscosity of my blood. The beautiful cakes Nurse R bakes for my hematologist’s sons’ birthdays. When Nurse R takes a turn, we talk about batter and frosting. “It’s a labor of love,” she says—meaning baking fancy cakes.

It’s almost 3:30 when we finally get home. My hematologist talked about giving me two phlebotomies next week, but I don’t have even one appointment. The scheduling nurse will call, I’m told. We turn on the radio to hear the latest on the manhunt in Boston. We turn it off again when it becomes clear that announcers are just filling air time as they wait for something to happen.

We call Sophie, who’s still on lockdown.

“My apartment is as clean as it has ever been,” she says.

Before the day ends, lockdown will be lifted and Dzhokhar Tsarnaev will be arrested. Before the week ends, I will have returned to RIVI three times – first to have them check on the bleeding, and then on what I will think is swelling, and then to see how soon they can take the PICC line out. By the time I make that last visit, I will have a new hematologist, with a crew of nurses who have lots of experience phlebotomizing people like me.

But none of that has happened yet. Right now, on Friday afternoon, April 19, everything is on hold, waiting to resume its normal flow.