A Tidy Death
First, I’m OK. I do not have cancer. For now. At least not where they did the ultrasound, CT scan and biopsy.
I’m writing this because I don’t want to forget the promises I made to myself when looking squarely at death.
As my friend, Dar, said, “It’s important to come face to face with mortality once in a while.” I thought, really? Seriously? No, thank you. Though, we all do. It seems to cluster for me. A friend gets sick, a parent dies, there’s a medical scare or a medical unbearable truth.
This spring, I had two close friends lose a parent the same month my husband and I faced the un-faceable.
IN THE BEGINNING
A month ago I decided to ask my doctor about the strange lump right above my clavicle. It had been there for a few months and I ignored it thinking it was this old, strange anomaly I used to get 15 years ago.
One cold Thanksgiving I’d spent the night on the floor of my aunt’s unheated farmhouse and had woken to find the right side of my neck, just over my clavicle, swollen. I imagined that the hard floor and cold had created some kind of swelling and wasn’t in the least worried. Until a friend stopped by to drink instant coffee and gossip about animals and all things horsey (4H, vets, farriers, and what senses one loses after a kick in the head).
The friend was terrifically worried and told us the story of a friend of hers, who “had a strange swelling in her neck, which turned out to be lymphoma.” Enough said. I scheduled a doctor’s appointment for the day I returned to NYC.
After seeing quite a few doctors and getting a CT Scan and an X-ray, I was relieved to find out that I had a strange physical anomaly, probably formed in vitro, which allows for fluid to pool without a sack to hold it, right above my right clavicle.
The swelling came and went for a few years and then disappeared. I tracked it in my calendar, looking for patterns and causes (tension, cold, too much touching, too little touching).
So when my neck had a strange swelling, I thought, “Ah, it’s come back.”
Then one day, I felt it consciously. I pushed it and felt its dimensions and realized that this did not feel at all like the swelling I used to get. The other felt like edema and made me feel like a frog with a puffed-out neck. This felt like a slightly lumpy, hard-ish, fatty ball. About an inch wide. I called my doctor.
Of course, I thought he’d look at my old X-rays and feel my fatty thing and say, “Odd. But nothing to worry about.”
He did not. “Does it hurt?” No. “It’s not hard, but feels solid. I can move it a bit … Have you noticed it growing?” No. So, the first “no” was a bad one, I learned. You want an inflamed lymph node to be tender. The second “no” was a good “no.” You do not want a mass to grow.
He is a cautious man, though, my doc, and started with an ultrasound to see if this mass was filled with fluid or solid. That’s my best guess for the ultrasound, anyway.
THE BEAUTIFUL HOSPITAL
So, I went to the peaceful and aesthetically thoughtful Martha Jefferson Hospital. I always look at the art at Martha Jeff because the taste of who ever it is that picks the art is exactly my taste — mostly local artists who use thick oils to paint simple still-lifes and landscapes that both evoke France and Virginia. And somehow, elevate me out of my fears.
Here is a painting by Jessie Coles in the cozy waiting room:
Recently, when my husband asked me what qualities I most wished our children would get/adopt/take from us and I said I hoped the kids would end up with a deep aesthetic sense for all things, beautiful and ugly. He laughed at this terribly superficial wish compared to his desire to have the kids cherish and create good relationships. Hopefully they’ll get both wishes. Here is what I’m seeing right now:
THE PERKY TECH
So, I am at Martha Jeff, looking at art, and writing in my journal. I had lost my old journal and was afraid to break in a new one — vermillion with a strong cover, and glorious.
But the occasion demanded some introspection.
The lovely technician was training a student. The tech was perky and upbeat, even as she whispered excitedly to the student looking over her shoulder at the screen in the darkened room:
“See right here … this … here it is on this screen …”
She left me alone to make sure the radiologist had all s/he needed. The first 20 minutes ticked passed. I wrote in my journal. I summoned my father’s hospital wisdom, and meditated. I fought the urge to look at the screen. Then, I peeked and saw a gray amorphous shape inside a tidy box. I reminded myself of the time I peeked over the shoulder of the radiology technician and confirmed that the X-ray of my daughter’s forearm looked fine, only to hear 30 minutes later from her doctor that she’d broken both bones. I am not a radiologist. But that box was around something…
Finally, she popped her head in to say, “Sorry! They’re just taking a long time! It’s not me!” Phew.
After 40 minutes she bounded in, “It’s OK. Looks great!”
Amazed and relieved, “You mean, I’m OK?”
“Oh, no! The pictures are great.”
Days pass, waiting for the report to be written and handed off to my doctor.
My mother comes to stay, but I don’t tell my father — he’s too fragile and it seems cruel to taunt him with something we have no answers for. My mother is a buddha. She is calm and present.
My mother lives in her mother’s house. She moved there in 1994 when my grandmother started calling out, “I’m falling! I’m falling into the rabbit hole!” And, “Call the doctor!” Which doctor? “Doctor Kevorkian!”
My mother curled around her own mother while she died. There were 40 people eating Chinese food downstairs. Grandma’s optimal number for a party was 70. She would have been happy to know that her own funeral celebration was held in a theater and then continued at her home until 3 a.m., ending only when the Dutch conductor had used a can opener to free the Turkish cigarettes from their tin and the Canadian Consul had used a screw-driver to get the hinges off of the wine cellar.
My mother spends her days cleaning, sorting, giving away, finding treasures. I ask how the purging is going, 18 years on. She says, “I brought a tart tin to Eugenia today.”
She never left her mother’s home. There are boxes of articles torn from New Yorkers since the ’30s. New York Times articles about Newt Gingrich from the ’70s. Grandma didn’t trust him, even then. My mother soaks in the tub with a box within reach and reads. Sometimes she finds wads of one-dollar bills.
I start thinking about how to have a tidy death.
I call an old and dear friend, a friend from college and beyond. We’d lost another friend to cancer a few years before and knew it could happen. She said, “I’m sure you’re OK. You’re “Bennis-y.” Meaning, strong genes. Like my father who has survived a 40 year stint of three packs-a-day smoking and countless high-voltage jolts from his deliberator. He is 87 and when he gave his notice a year back, the university president said simply, “My own father retired at 62 and died a sad man.” So my father works full-time, happily. Strong. Bennis-y.
Still, I started wearing waterproof mascara, as I found myself more and more often crying in the car.
Hal was anxious, but positive. I warned him not to Google lymphoma. He promised he would not. (He lied.) He held me and reassured me that it was nothing we couldn’t and wouldn’t handle together and that I would be just fine. Just fine. Just fine.
Hal was out of town when I got the call from my doc with the results. “It looks like a mass. I know you’ve probably thought about it, so no use in keeping silent. It could be early-stage lymphoma. (Or anything else? He doesn’t offer alternatives.) There are two, or I suppose, three possible steps. Wait, and see if it grows. Have a biopsy. Or CT Scan.”
I told him, I am type-A and waiting was out of the question. We decided on the CT scan to make sure there was nothing else in the area before they did the biopsy.
After the scan with that freaky dye, another interminable wait for the report to be sent. Then the nurse calls saying I should make an appointment to meet with the doctor.
Hal was scheduled to leave town at 2pm for business. I called and left a message with the nurse asking for a time before 2pm. She left me a message saying that we could come in at 3pm.
I called and she answered the phone (you probably know how amazing this is)! I ran out the front door so the kids wouldn’t hear. I’m in my nightgown on the street in front of our house, crying begging, pleading, demanding, acting like a baby, “I might find out that I have lymphoma today and it’s not fair that my husband can’t be with me! I need to have him with me!” She said, “Let me see … Actually, we can see you at 11:45 a.m.” Ha! Perfect.
When the time came to walk the 100 yards from our house to the doctor’s office, my feet failed me and I collapsed into Hal’s arms, crying. He held me up on the sidewalk. He held me up. He held me together. And we went in to listen.
In the office, Hal and I looked at the framed bible quotes and drawings of golf courses. Strangely discomforting. The doctor came in saying, “This is not the conversation I wanted to have. There seems to be a mass … over an inch and round, in your lymph. The next step is a biopsy. They’ll give you a drug so you won’t remember. They’ll take two samples. A very thin needle will take some cells and a thick needle will take a larger sample. You’ll need someone with you to drive you home …”
I ask, “Are there any other alternatives? Anything else it could be? I brought the films from the CT scan of 15 years ago — remember? I used to get this swelling right here …”
“That is a coincidence.”
“Surely there are other things that could — “
“Uh … Have you been scratched by a cat? No? Any chance you’ve been exposed to tuberculosis?” He was searching in the corners of his memory and coming up quite blank.
MY FRIEND THE SURGEON
I call a friend. A surgeon. A friend. She is smart and strong and unafraid. I love her. She takes me to a huge Italian dinner and we gossip and drink wine until she says, “OK, I want to touch this.” She puts her small, strong surgeon’s fingers behind my clavicle, feels the lymph nodes around my neck and under my chin. My doctor just sort of poked me, with a slight disgust. This felt like a real examination. She proclaimed, “I’m not worried. Cancer feels like a frozen pea. This is sort of soft, but solid. I can move it around. I think it has something to do with that history of yours. There are three types of things it can be: lymphoma, infection, or some physical anomaly that formed in vitro.” Love.
But I still kept making notes and plans for my Tidy Death. Including this essay.
WHERE MY HEART GOES
The most painful subject to let my mind alights on, is our children. I cannot bear it. The thought of my children losing their mother is paralyzing.
If it were just me, I know that I have had a wonderful life. I could die and know that I have had the chance to do the things that I loved and had passion for. I have loved and lost. I have been held up by my friends (more on that in a minute). I have seen beauty in every crevice and far off land. I have been a guest in many worlds not my own and have been welcomed. I have few regrets.
One thing is very clear, if I am indeed sick, I still feel healthy and strong. So now is the time to make amends, say I’m sorry, say thank you, make up for any regrets I have.
WHERE MY MIND GOES
Because I am a list-maker, a do-er, a type-A-gotta-cross-it-off kinda gal, I feel a strange excitement and energy when I think of all the things I want to do to prepare for my death.
Put the hanging folder with my Will and Living Will up front and label clearly.
Sell my business.
Visit my Dad.
Visit Cleveland and see a City Music Performance (my mother’s work), Carlo, David and Joe (friends of my Grandmother and friends of mine).
Visit my brother in Prague (he has lived there for many years and I have yet to eat cabbage soup and pickled beets with him surrounded by red-tiled roofs).
Take a beach vacation with Hal and the kids. A place with turquoise water.
Write letter to Hal.
Get rid of all my shit!
GET RID OF ALL MY SHIT
The only images I have of getting rid of one’s life belongings is that of the bereaved family sifting through boxes, shoving clothing into green garbage bags, staring blankly at brushes full of hair and finding lifeless Kleenex with lipstick blots in the back of the drawers, fighting over ownership, taking weeks and months to pay bills, organize services, notify magazines, phone companies, professional networks, and wondering where that painting, book, ceramic mug, came from. Is it worth anything? Antique store, Goodwill, EBay? Or trash?
No way. As I waited to learn more, I made a plan to leave clean closets. I would invite my friends to come stay for the weekend and go through my clothes with me. Dar and I joke that we have the same body, though she is three inches shorter. We actually do — medium breasts with slim waists and alto ankles. Dar could take anything that fit and anything she wanted to wear on stage.
Another weekend would be Kira to go through all my Nia clothes.
Jeannie to stay and choose good social work outfits.
(Amazing that I seem to have a good friend for each of my careers: performance, Nia and Social Work.)
Another week or so with my mother to make notes and pin them to the magenta and paisley cloak I’d worn to officiate a wedding (it was my mother’s in the Audrey Hepburn early ’60s), the red satin bias-cut gown (given to me by Dar as a wedding present when I didn’t buy it as a wedding dress), and my wedding dress bought on Mass Ave at my favorite boutique. I tried the gold and green mermaid gown on for a lark and knew that it matched the antique gold-threaded and beaded wedding scarf I’d bought just weeks before a block away.
I had already sorted my jewelry when a friend threw a Jewelry Swap. I’d sent a few surprised friends earrings and necklaces. I’d made a pile for my daughter. Mother would help me label them, each with their stories.
The women in my life are strong. The moment I tell them what we are up against, they grow roots into the ground right in that spot and stand with such towering strength that I know we will all be taken care of. I worry about what my illness will do to my family. How my children will manage? Who will pick them up from school? Who will comfort them? Who will cook and make sure they take their vitamins? I know Hal will be there, but he travels for work and if I’m sick, it would be hard to take off much time. How will it work?
They know. They say, “I am here. No matter how long this goes on. My family will care for your family.”
My gratitude is endless.
This month of fear and loving happened to coincide with our tenth anniversary. We hadn’t planned anything special as we’d already gone away for the weekend a few months before thanks to the sweetness of the couple that parented our children for two days. More gratitude.
No gifts, but haikus, as always. Drinks on the theater rooftop and dinner at our favorite noisy Italian restaurant.
I had been under something of a stress cloud and jumped into an evening of FUN a bit too forcefully.
Here is a photo of me late that night with some kids we met at a bar. Indeed! FUN!
I think of that month, the month of June, as an unexpected deepening, and unexpected renewing of our vows. Hal and I have a strong relationship, I love him daily. I love the way he looks and smells and I love the way he cracks me up.
We bicker about the quotidian: Why are the oat moths back? Who gave the kids dessert so late? And the logistical: Do we stay in a hotel the night before the flight or get up at 4 a.m. to drive?(I prefer to get up early. Hal loathes it.)
The big problems (money, sex, fidelity, child-rearing, in-laws, values, presidential candidates), we start with 87% agreement, so we hotly discuss the 13%, or let it go.
This month, this celebration of ten years of marriage, this moment, was marked by the aura, the chance, the possibility of illness and death. And Hal renewed his love for me with unshakable strength, optimism (not his thing, normally), grace, love, support, and absolute presence. He reminded me again and again that he was with me for the whole experience, wherever we went.
For many years, maybe the 10 years of our marriage, Hal has talked about what it would mean to do the work he loves, to leave the realm of his worldly expertise, to move into work that is more in-line with his whole self — Hal’s irreverence, Hal’s broad intellect and curiosity. To start his own business. To leave a steady paycheck and health insurance. We were closer to this departure than ever, this spring. But the conversation fled the premises, was banished without a second thought, the moment the doctor tilted his head in consternation.
MY LETTER TO HAL
I started to craft a letter to Hal. I know that he is strong, but there is the reality of raising two children while working a job that demands long hours and lots of travel.
My Dearest Love,
In the short-term, I know our community will knit together a womb for you and the kids. Dinners will arrive, play dates will emerge, sympathy and love will pour into your lives. But.
I know that you will want to and need to get remarried. I want you to. I do. For your sake and for the kids’.
But, before you do, you should definitely sleep with Trish and Kelsey and even, Paisley, if you like (fake names, I promise!). Trust me, just do it. Have flings galore. Go nuts. Please. I know this sounds odd, but I’m deadly serious. (Get it?)
Sleep with them, but do NOT marry any of them. Remember that Trish is crazy-chaotic-disorganized and her kids are a disaster. Kelsey wouldn’t want to marry you, anyway, so no worries there (face it, you would drive each other crazy and you’re not rich enough). And Paisley is hot, hot, hot, but is a serious woo-woo tribal goddess, even though she shaves her underarms. A month of oiled and incensed sex would be good for you, but not a lifetime.
I think that someone who does not have kids of their own is the best. I want a woman who can love our kids almost as much as I do. Is that possible? Not a woman who is young enough to want children with you, please, no half-siblings. A woman of 40 who is ready and open to love. Please.
You may need a nanny to help out in the time between our friends’ support and the new wife/mother. Here is what the Craigslist Ad should read:
“Nanny needed for 2 children ages 6 and 8. Childcare, cooking, cleaning, and must have own car. Flexibility, warmth, humor, depth and charm required”
Maybe Fatma would move down?
Love you so,
PS: If this all blows over and I am fine, START YOUR BUSINESS!
DEATH IS IN THE AIR
A friend will pick up the kids from camp. We tell them that I will be woozy from a test to make sure that the bump in my neck is OK. The kids don’t ask any questions just then, but my daughter has been asking for weeks if I’m going to die. “Mama, I’m afraid you are going to die.” Then, is she going to die? Is my father going to die? Is the world going to end because of global warming? Hal and I have mentioned nothing, but endings and finality are in the air. I reassure her with my best fake smile that I am going to live for a long, long time. And agree that we need to stop polluting the earth. We can do something about that.
I FALL IN LOVE
Back at Martha Jeff for the biopsy, I fall in love with my nurse, as I always do. I fell instantly for the anesthesiologist who gave me the block during my son’s birth. I fell madly for the strong-armed nurse who held me as the doc gave me an epidural during my daughter’s birth.
My Martha Jeff nurse has a thick drawl, so I think his name is Merrick, but his tag reads, “Mark.” He is MY nurse. For me. He prepares me, tells me what exactly will happen, reminds me to reverse the johnny, takes my vitals, smiles and reassures us both. Finally, he spins my bed easily out the door, down the long hallway and into a lavender operating room with a sign that reads, “Minor OR.”
The doctor appears, gracious and gorgeous (I’m beginning to believe the studies linking fear to love). He calmly explains to us both exactly what he will do. A small needle and then a thick needle. We agree to all and Hal is shown the door. He will wait for me. Mark injects the twilight drug into my IV and I drift…
The haze of twilight, sounds, lights, the doctor smiles, Hal is there. “We drained the lesion. We didn’t get to use the large needle.” What does that mean? “It was filled with fluid and the pathologist did not find any malignant cells.” I am so confused. So the ultrasound and CT scan found a mass, but the mass was filled with fluid?
We leave, unofficially elated. Two days later my doctor confirms the findings in a voice mail, which ends, “We should keep following this.”
I call my Dad, my far-off friends, I tell Hal to quit his job, we argue about the oat moths, I cry and cry and vow to clean out my closets…in case.
Kate Bennis writes screenplays, essays, and blogs. She is an actor, writer, small business owner, and therapist. She lives in Charlottesville with her family and two fish.