Hysterectomy
By Heather Bartos
The day before my hysterectomy, I bought some tulip and daffodil bulbs. And I had the best of intentions, although slightly sentimental and symbolic, when I purchased them. I could tuck them into the dark, under the October earth, and then in March or April I would see their cheery, teacup faces. I would still be able to nurse and nourish new life. It would be like giving the finger to illness and death.
In the end, I just couldn’t do it. The symbolism was just a little too heavy, too much like one of those bad stories that have too many adjectives written by high school sophomores.
Plus, there was a practical reason—it was raining and gray all that Sunday afternoon, and it didn’t stop until after the dark had already come.
We had known this was coming since June. I have had endometriosis for years. It is a weird disease in that the lining of the uterus won’t stay put. It migrates around and sets up shop on other organs. It can cause severe pain. It can be like having your pelvic organs shredded with a cheese grater. It can make it hard to even touch your stomach because it hurts so much.
The symbol for breast cancer is the pink ribbon. The symbol for endo should be a red chainsaw. And that chainsaw should be turned on, at high volume, for about twelve days a month, for twenty years.
After years of infertility, at age 41, I had a laparoscopy, which is how doctors confirm the diagnosis. After they confirmed it, I started taking progesterone, which had me crying at the dinner table over random things instead of just during the endings of Pixar movies. I went and checked in with the doctor.
“Well, we don’t have to treat it,” she said.
I went back a little less than two years later, telling her that the pain level was so much worse, that it was like watching someone slowly turn a dial up one number every month. I requested a pelvic ultrasound.
“We don’t do those for endometriosis,” she said. “That’s a waste of money. We would diagnose it on symptoms.”
So I went away, frustrated and disappointed.
I went back about nine months later and described that someone was holding a nail gun to my right ovary, and that someone else was sledgehammering on my pelvis. This time, I got the ultrasound.
Four days later, I received a call informing me I had a mass that was four inches by three inches by four inches on my right ovary, and a two-and-a-half-inch polyp in my uterus. These renegade, pioneer endometrial cells had set up camp and were having large family gatherings.
“But that’s the size of a child!” I shouted. “When can I get in for an appointment?”
“She can see you on Monday or you can get in next month.”
We chose to go in that next Monday. My doctor’s lipstick was very pink and crookedly applied. Did I trust her with a scalpel if her lipstick was crooked? What kind of message did that send?
“I can’t say I’m surprised,” she said. “It’s been untreated for a long time.” Did I imagine that look of motherly disapproval while she washed her hands?
“I want it out,” I told her. “I feel like I have a terrorist organization in my pelvis. I’m done.”
She nodded.
“I’ll have my assistant call you with a time to schedule.”
But nobody called me that week. It turned out that the clinic was down one surgeon, and they would hire another one, but not until next January. The nearest they could get me in to do the deed was August 16th, only ten days before I was scheduled to begin teaching for the next school year.
And for someone like me, who tends to be anxious, two months to anticipate the inevitable is a long time.
If a woman has both ovaries removed, and that was what my doctor had proposed to treat my endometriosis, it is essentially castration. I would have to pay a pharmaceutical company for the rest of my life to replace my natural hormones. Many women with their ovaries removed don’t even have fantasies anymore. They have to pay someone else even for the experience of daydreaming about sex.
There was one study that said that women with both ovaries removed have a nine times higher risk of lung cancer. Another study said that women with both ovaries removed had a higher risk of death from all causes compared to older women who had their stuff intact.
With so much time on my hands, and access to the internet, I started wondering if I should get a second opinion. We have a university teaching hospital not too far away. My doctor said that when she was trained, you had to remove both ovaries.
So if that was the thinking when she was trained, what was the thinking now?
I found a surgeon at the teaching hospital whose area of expertise was endometriosis, and who had done a six-year residency doing these types of surgeries. Her profile picture looked serene and confident. Her lipstick was symmetrical. In addition, it said that she loved to bake. (Oddly enough, every single surgeon I researched all said the same thing. I wondered if anyone had ever researched the connection between culinary skill and gynecology).
I imagined this woman, dressed all in black, wielding a scalpel like a ninja, snipping and slicing and dicing until there was no massive cyst or pain left. Then I imagined having cookies and milk with her.
Maybe her office would even smell like freshly baked cookies instead of hand sanitizer and icy metal.
I made an appointment, but so had many others before me. I would not be able to see the ninja surgeon until early August.
And in the meantime, the pain continued. It kicked my ass the entire first week of July, where the cheese-grater cramps left me in a fetal position on the couch while my husband and daughter played outside. I started having episodes of random bleeding, where I didn’t know what end was up, and I would wind up crying. I was getting lovely, stabbing pains on the side where the ovarian cyst was lodged.
“Mom, why can’t you come into the pool with me?” my daughter asked.
I flashed back to middle school, where we would sit out and say the letter “M” to explain why we were not dressing down for PE that day.
And, I thought, pretty soon—you’re going to get yours.
For all the times I have passed up purchasing white pants, for all the bottles of Aleve I have purchased instead, and for all of the hundreds of days I have been in mind-blowing pain over the last twenty years—
Uterus, you are going down. It is only appropriate that you should face a violent, sudden end after all the ways you’ve done me wrong.
While I was waiting to see the ninja surgeon, I started to do some strange things.
I looked through old photo albums showing me as a high school student, a new bride, a new teacher. And I could not believe how beautiful I had been back then. All I remembered of how I had looked was hiding in oversized flannel shirts and taking refuge in my dad’s Army jacket. Why had I never appreciated my own dark eyes, how luminous my skin was, how my hair hung like a heavy curtain down my back?
Why had nobody told me, or let me know? Why couldn’t I see it for myself, even if someone had told me?
I had never been one for experimenting much with makeup, but for some insane reason, I signed up for a consult. I started playing with colors, and shading, and liking names of eye shadows like “rock on” and “boss lady.”
“A hysterectomy?” the makeup consultant said. “My grandmother had one of those!”
For some reason, the little trays of makeup made me happy. I couldn’t figure out why until I thought of flowers—the brightest flowers attract pollinators. Would it be false advertising to wear bright colors when I wasn’t really part of that whole cycle of life anymore?
The appointment with the ninja surgeon went well enough, but actually it was the little luxuries at the teaching hospital that won me over. There was a large gas fireplace in the lobby, and I imagined sitting by it and drinking something warm and comforting, and eating cookies baked by the ninja surgeon. The paneling in the doctor’s office was wood, warm and soothing. I felt like I was at an exclusive spa.
As you can see, I chose my surgeon using very logical and well-reasoned criteria.
The ninja surgeon, who was young enough to be my make up consultant, thought an MRI would be appropriate to make sure the endometriosis had not spread to other organs.
The day of the MRI, I wore a shade of eye shadow called Bring It On. I had not been allowed to eat or drink anything before the procedure, and the noise of the machine, plus the lack of caffeine and the resulting headache, had me in tears by the end.
“Nothing but good news,” the woman from the clinic informed me when she called a few days later. “No evidence that it has spread anywhere else.”
I sent a tiny mental thank you note to my pioneering endometrial cells. To the best of our knowledge, it sounded like though they had hunkered down on the right ovary and were settled around the campfire, making s’mores.
Now, if they could just turn on each other, like the Donner Party, and practice cannibalism, they could save me thousands of dollars.
Because the ninja surgeon was not available until the end of October, and because we did not have the results back from the MRI back in time to advise my regular gynecologist, I canceled the surgery scheduled for August 16th.
I felt a little guilty about it. I liked my regular doctor and I had known her for several years. Her profile also mentioned that she was a decent baker, too. But my new doctor thought that maybe we could save one of my ovaries. She wouldn’t be able to tell me for sure until she went in, but she thought maybe it was possible.
Besides, canceling surgery meant I could also keep a promise I thought I wouldn’t be able to keep.
“Want to see if we can still go?” I texted. I was wearing my Rock On eyeshadow. The world seemed brighter when I had it on.
The answer came back almost immediately.
“Yeah! Let’s go!”
My best friend and I have known each other since we were ten and her name came alphabetically after mine on the fifth grade teacher’s seating chart. That fifth grade teacher’s seating chart is something I will always be grateful for; it has made my life richer in every way. Our friendship survived middle school, mean girls, high school boyfriends, college and venturing into the adult world, her wedding, my wedding, the births of her two children, the adoption of my daughter. Now we are navigating another transition together—middle age.
We had been talking for years about taking a girls’ getaway. The last time we traveled together, we were 18. I did some research and found a spa about thirty miles from her house in California. I double checked that my husband could do the drop off and pick up at day camp. And I bought a ticket—without trip insurance—for the first time in my life.
And then I had an ultrasound declaring that I needed surgery.
But now that it was delayed, I was free to go.
We had a perfect day. Fish tacos for lunch, hiking on the beautiful trails, a glass of red wine that sets us giggling uncontrollably, a short facial and a short massage. And then dinner outside, where we have another glass of wine and watch the sun disappear into the ocean.
In over thirty years of friendship, Amy has always gone first. First one to drive, first one to have a boyfriend, first one to get married, first one to have children. This time, I am going first, reversing the sequence, dismantling and losing part of who I was.
Remember this, I told myself as I ate the most delicious linguine I had ever had. The Dire Straits sang, “You gotta know happy, you gotta know glad/Because you’re gonna know lonely/And you’re gonna know bad.”
I do know that you have to plan and invite in order for happy and glad to come. Lonely and bad show up all on their own.
At the pre-op appointment a month later, the ninja surgeon said she thought she could save my left ovary, because it didn’t look too bad on the MRI.
“How does that work?” I asked.
She explained that it would still make all the hormones to protect my heart and bones a little bit longer, until I would enter menopause at a natural time, whenever that would be with my genetics.
I was wearing eyeshadow called Why Not? It was a lustrous shade of golden beige.
“That would be great,” I said. “I could deteriorate along with my peers that way and not before.”
She laughed. My husband squeezed my hand.
“It’s going to be a long surgery,” she told us. “We’re going to take a good look around to make sure we get all of it out.”
“I wonder if I have long enough to renew my driver’s license?” Jim said, absolutely deadpan, as we walked back out to the car.
A few days later, we heard that Blue Cross had denied my procedure because they said the hysterectomy was “not medically necessary.” I wrote them a very snotty letter and authorized the hospital to make an appeal on my behalf.
The pain was bad that week.
I had never considered, in the last four months since the first doctor mentioned surgery, that the insurance company could say no. Health insurance was precious and a big reason why both my husband and I worked full-time. I knew people who didn’t have insurance couldn’t get surgery. But it had never occurred to me that even with insurance, I might not be able to.
Online, I saw a woman with a Go Fund Me page to pay for her endometriosis surgery. And although I would never wish this disease on anyone, just for a moment, I thought of that woman’s insurance carrier.
Three days before the surgery was scheduled, I got a call from the hospital billing department. My insurance approved the surgery. I listened to the message on the machine three times, just to makes sure I heard it correctly.
The night before, I followed all of the precautions. I took the special shower with the antibacterial soap that looked like Kool-Aid. I got into a freshly washed pair of pajamas and laid down on a freshly washed set of sheets.
At around midnight, though, my daughter shouted out for me. And bacteria be damned, I went into her room, slipped into bed next to her, and stroked her hair.
“You aren’t going to die, right, Mom?”
“I’m not,” I told her, cuddling close. “No. My doctor is really, really good.”
“But the doctor could make a mistake,” she said, holding my hand.
“They’re not going to make a mistake,” I said. “Let’s think about something else. Remember the ice cream shop where we go in the summer, the one where you get the bubble gum ice cream?”
“Yeah,” she said, warm and drowsy. “What’s it called again, Mom?”
“Tuckered Bear,” I told her. Her eyes were closed, and her breathing was steady. “And we will go there soon, and I will get the maple walnut like I always do.”
Within a few sleepy, sweet minutes, she fell back to sleep. I held her a few more minutes, the miracle of my daughter.
I knew God would never take me away from her. But I wasn’t quite as sure about biology.
In the morning, after the second antibacterial shower, I texted Amy.
“You are strong,” she texted back. “You can do this. You will be okay.”
Jim and I checked in at the fancy front desk by the gas fireplace. If I didn’t know any better, it would seem we were checking into an upscale hotel, not a hospital. The nurses had me change into those no-slip socks and gave me a bag to hold my stuff.
“Ooh, swag,” said Jim.
It was a little like getting ready backstage for a performance. The surgeon checked in with us, the residents, the nurses. A priest came for a few minutes to pray.
The last one to check in was the anesthesiologist.
“I don’t want to see the operating room,” I told him. “I trust you people. I’m sure it’s clean.”
He smiled. Jim squeezed my hand again, and I remembered the swag joke and squeezed back.
When I woke up, it was almost dark. Everything was blurry.
“Mom? What’s my date of birth? How old am I? How many fingers am I holding up?”
I remembered being very proud that I could answer every question she asked me.
And then I didn’t remember much of anything for hours.
Hospital time is strange. Sometimes it felt like someone had their hand on a remote control, and they would hit fast forward, and I wouldn’t remember anything. And other times they would hit pause, and I could see what was happening and be in that scene.
I remember the two-a.m. stroll around the recovery area with the night nurse. Hurt like hell, slow in every movement, but I held onto the IV pole, and I did not fall. My abs felt like I had attended the Pilates class from hell and then someone had injected glass into them.
I remember the seven-a.m. appearance of the medical residents who observed the surgery the day before. The senior one explained some of what they had found. My bad ovary had been larger than my uterus, which were both gone now. They were able to save my good ovary. I told them my daughter was building a replacement uterus out of Legos for me at home.
Nine-a.m. appearance of my husband. We watched CNN. Nothing had changed. The world was still a mess.
11 a.m., into the wheelchair and out the door, into the car, and home.
I had been told to walk during my recovery, so I did. The day after surgery, I could only do 15 minutes. The next day, by myself, for a few minutes longer. And by Friday, on a warm, golden October afternoon, for twenty minutes, looking at Halloween decorations. When I got back home, I sat and looked out our windows at the trees, blazing yellow and orange and crimson, burnished leaves snapping like sails in the wind. The sunlight drizzled through and sweetened them like maple syrup.
I may not be young anymore. I was born in the spring and named for a flower. I was married in the spring. Today, it’s hard to tell if it is summer or fall.
There is still time to be brilliant, to hold and reflect the light, before the leaves fall.
Heather Bartos is a teacher and writer who lives near Portland, Oregon. She holds a Master’s degree in special education and a Doctoral degree in educational leadership. She has a poem that will be published soon in Porcupine Literary and a personal essay that will be published this fall in Fatal Flaw Literary Magazine.