March 20, 2020
“Babe, will you please rub my back so I can fall asleep?”
#MyMississippiLove, Jamie replies, “Yuh.”
I roll over onto my tummy. Jamie begins rubbin’ my back so good that I twist onto my right side to get more pressure on the muscle underneath my left scapula.
Sweetly he whispers, “I can feel where your wings would be.”
“Awe, Babe. That’s the sweetest thing you’ve said to…”
“…your demon wings.”
January 12, 2020
It was in those moments that #MyMississippiLove knew he wanted me to be his girlfriend. He asked. Then Jamie mentioned, “It’s kind of cheesy, but who knows, in a year from today I could be bringing you back here to celebrate us being together one year. We could get dressed in the same clothes and spend the day together.”
This morning, as I slide my jeans up over my hips and button them I asked him, “Do you even recognize I’m wearing the exact same outfit I wore on our first date?”
He is sitting on the edge of our bed, he grabs my hips to pull me into him. With his left hand on my hip he reaches his right hand down to my left ring finger. He traces his fingers over my engagement ring and wedding band, “It’s not exactly the same; you got these. And these. And, these,” he reaches up to my ears and neck to touch the matching earrings and necklace that he gave me as wedding gifts.
I had no clue he notices these small details.
I ask, “Do you think you could fall in love with me again?”
“No. I can’t. Because I’m already in love with you.”
We spend the day tracing the steps of our first date, that was a year ago today.
November 13, 2019
Some days are good. I hadn’t cried in more than three days. Since July, that’s a record.
Some days are bad, today is one of these.
I had a nightmare that I am reliving all of this again, brand new. The doctor just told me that I have cancer.
I wake up crying this morning. Not little tears, but full on sobbing and gasping for air. My face, pillow, neck, and the hem of my pajamas are soaked.
Then, I don’t know what to do because as much as I want to forget this and get over it, I am sad over something I cannot control.
I am a huge proponent of mental health. As such, I am seeing a professional. I do not want to go. I cannot help to think, I am crying in my sleep, how can the professional control that?
#EndometrialCancer
November 11, 2019
His eyes twinkle and he laughs as he mouths, “You’re extra,” when I have a touch of peculiarities showing.
Sometimes, out of nowhere, I hear him whisper, “Extra-ness.”
When I cook and it’s his turn to clean after supper, #MyMississippLove accuses me of hovering like a vulture until I can crow-hop in to clean everything again, right behind him. He’s not wrong. Because he’s made mention of this bad habit of mine, something I didn’t even realize I do, I’m trying to let the way he does things be enough.
I’m still on chore restriction. I can’t lift, sweep, mop, vacuum, etc. I’m slow. I tire easily.
We were raised with the philosophy, “A family that works together, stays together.” I’m a huge believer in sharing chores. To sit on the sidelines is difficult.
Don’t get me wrong, it’s not that difficult. Some of it is quite enjoyable. I mean, the video I recorded of him vacuuming under the bed this past weekend is foreplay for the next five weeks, possibly much longer.
<insert vacuum video>
For the first time in a month, tonight, we went grocery shopping.
I carried up the eggs, bread and chips: an entire three bags. Our apartment building has push button door codes. Usually Jamie loads down both arms while also punching in the codes, and holding the doors for me. He’s a firm believer in “making it in one trip or it stays in the car.”
Tonight, in the cold, I pressed the codes and waited to hold open the doors for him.
Jamie carries up all of the heavy groceries. He even makes two full trips.
I also usually put all of the groceries away. Like I said, I’m particular. I like the cheese to go in the cheese drawer, the mustard in the door, the eggs in their slot on the short shelf. When I look in the frig, I don’t want to search – it should be where it goes. Also, this way, if we need groceries I can open the frig, take a glance, and I know exactly what we are missing.
Tonight, for no other reason than he shooed me out of the way to take over, Jamie put away the groceries.
All of this to say, now, as he is softly snoring next to me, I am fighting every urge not to swoop back into that refrigerator and rearrange it the “correct” way.
The next morning I got up and drove the hour and a half to work.
I text my Mom. Then, I call her.
I break down while informing my boss at work.
Somehow I manage to robotically navigate through the next day and a half.
There is not much I remember about my first oncology appointment, but some memories are vivid.
I am extremely careful to pick my outfit. Because, I know without a doubt, once I have the news confirmed, the dress I am wearing is tainted. It will become, “The dress I was wearing when I got cancer.”
Now, I cannot remember which dress I wore.
Until Jamie started going to all appointments, my Mom sits next to and comforts me through every doctor appointment. She is the holder of tissues – and the tissues at doctor’s offices are worthless. I might as well blow my nose directly into my hand as the thin paper disintegrates immediately. Most importantly, she is strength as I fall apart.
Dr. Santoso comes into the exam room. He is accompanied by his nurse. He is matter of fact. I have pre-cancer, atypia hyperplasia with a 40% chance of it having already spread to my uterus. This is something that I’ve had since the previous D&C in November 2017, something he accuses me of knowing about and doing nothing about.
I correct him. This is new. This is something that Dr. Donato never followed up with me.
We want to know how I got this.
Dr. Santoso says, “You gave yourself cancer because you’re fat.”
None of this makes sense. There are so many fat people without cancer. Let’s suspend that line of thought and possible research. This is the first confirmation that I have cancer and the oncologist is using it as an opportunity to shame me for being fat.
He has no bedside manner. He is rude.
The lack of compassion should not be a surprise. Without a warning from Dr. Donato or Dr. Santoso, they sent me an automated telephone call announcing this appointment, without a declaration of what or who I was seeing. I had to Google the phone number to learn it is an oncology appointment.
Santoso asks, “Do you ever drink fruit juice or sugary drinks?”
I reply, “Yes. Sometimes.” I scoff because this is an odd line of questioning.
“Don’t drink it any more. You only drink water and you will lose weight.”
I might have an orange or cranberry juice once every six months. I don’t see how that is going to work. He doesn’t know my diet and is making assumptions.
He recommends I immediately schedule a hysterectomy.
A hysterectomy is out of the question. Jamie and I already discussed still trying to have a baby. Our ultimate goal is to treat this issue, have a baby, and then immediately after delivery have the hysterectomy. We don’t have the need or desire to go into the business of breeding multiples or repopulating rural Mississippi. We refer to our plan as “One and done.”
Santoso offers a second opinion, recommending one of his mentors, Dr. Smiley. I request the second opinion. I never want to see Santoso again.
Because saving fertility is of the utmost importance, he also recommends a fertility specialist, Dr. Kutteh. I request that too.
Santoso and his nurse leave the exam room, but tell us to stay there. Mom and I do not know if we are to stay to wait for an appointment. There is confusion. There is a lack of communication from the doctor. We find a different nurse. She explains that it will take days and we are free to leave.
As I approach the nurse’s desk to check-out, I catch a glimpse of my Dad sitting in the waiting room. He is content to sit on his phone. He is innocent of what was said in the exam room. He doesn’t know I have cancer. I break down. Then, I cry harder because he is sensitive, like me, and I don’t want him to know I was crying. I cry more because I don’t want to tell him.
Mom and I stay in this hallway for a few minutes. She doesn’t know if she should put her arm around my shoulder or hug me. She is just as stunned as I am. I splash my face with water. There are no tissues. I use rough, brown, paper towels. At least they don’t soak my hands.
I rush out of the office, trying not to make eye contact with my Dad. I make it to Jamie’s car. Heading towards home, I cry a majority of the commute.
October 10, 2019
My cell phone begins ringing. I feel the buzz of my watch announcing the call. The caller ID notification shows McDonald Murrmann Center for Wellness & Health.
I think, ‘That’s odd. I was just there yesterday for the pregnancy test.’ I answer my phone, “Hello?”
“Is this Averill?”
“Yes.”
“This is Meredith. I met and spoke with you yesterday about pregnancy. But,” she pauses for longer than necessary, “I just couldn’t let it go. I decided to dig in your chart.” She pauses again, “Did you ever have a follow-up with Dr. Donato after your surgery in November 2017?”
“No. I had to cancel the follow-up. My supervisor was on vacation and I couldn’t get off work.”
The surgery was November 30, 2017. The follow-up with Dr. Donato was scheduled for April 11, 2018. I figured if the biopsy results were bad they would have called prior to five months out. No news is good news, right? Besides, since then, I had gone in for my annual exam in November of 2018 and the pregnancy test yesterday. Nothing was said those times either. And yesterday Meredith said my chart looked good. Surely, if something were wrong someone from McDonald Murrmann would call me, and not wait a year-and-a-half.
Meredith continues her questions, “Are you sitting down?”
“Yes.”
“Your biopsy results came back as,” she began spouting strings of four-or-more syllable words, things I’ve never heard before. Words I’m sure if strung together correctly would conjure spells. She keeps talking, “Your cells came back larger than expected. Endometrial. Uterine lining. 40% chance.”
There! I understand more than five words.
“I don’t understand your vocabulary. What are you saying?”
“All of this means you have pre-cancer and you should have been getting D&C biopsies every three months for the past two years. It’s pre-cancer.”
I’m sitting at my desk at work. I scribble, “pre-cancer” in blue ink on my scratch paper. And then I scribble the words again over top of the original scribble. I keep scratching the words over top each other.
I sit there, watching my hand repeat the scribbles. It is around 1pm. The sun is so warm and bright streaming in through the skylight above my desk. Everything white is glowing: my papers, the desktop, my office walls, all glowing with a magnificent brightness. The sun on my back feels like the first day in Spring when the rays are strong enough to warm my skin through my clothes. I want to soak in the warmth, to sit there basking in the sun, to ignore the numbness creeping in that coincides with the audacity of fate. Time is slowing to a stop and yet my mind is racing. I feel like I am swimming through Karo syrup, backwards, trying to be me from five minutes ago.
I cannot exactly remember what Meredith said next. I think she asked if I was still there.
I’m pretty sure that I blurt out, “But, I just got married! How do I tell my husband of three weeks that I have pre-cancer?”
My gynecological surgeries are not a secret, I already explained to Jamie that over the past 17 years I had three D&Cs: dilation and curettage. One coinciding to remove a poly-binomial cyst from my right Fallopian tube. A second D&C with cyst removal from both my right and left ovaries. The third one in November of 2017 to scrape out a polyp. I had never actively tried to get pregnant.
Until we made the decision to start a family, I had been on birth control for a decade.
I told Jamie, “I’ve had a lot of surgeries. I’m older, it may not happen.”
He said, “Regardless, we will have a great life together.”
To beat all, none of these surgeries came with a diagnosis or a reason as to why it kept happening. Over the past 8 years it was paired with Dr. Donato constantly reminding me, “You’re fat.” Duh, everyone can see that. “Lose weight.” When I dropped 60 lbs, she didn’t even acknowledge it. “We need to decide to remove your uterus, when you think you are done with it,” without an explanation why.
On the other end of the phone, I hear Meredith talking, “You need to have emergency surgery, another D&C, as soon as possible. The surgery center will call you with a date.”
I ask and she tells me to continue with the plan from yesterday to include the prenatal vitamins, the ovulation and pregnancy tests, and the prescribed hormone to start my cycle. The surgery will just be additional.
Immediately my mind thinks, ‘How do I protect Jamie and my parents?’
I lead with having surgery and large cells.
I call Jamie.
I text my Mom.
The surgery center calls.
July 8, 2019 arrives.
For my 2017 surgery, Dr. Donato was an hour and a half late. My assigned nurse let me know, “We are just waiting on the doctor.” Through the curtain I could hear the nurses at that surgery center complain about her constant and notoriously late arrivals. I interject, “None of this is new. I’ve had to wait in an exam room for her for three hours, multiple times.”
This time I was expecting a repeat of Dr. Donato’s tardiness. To my absolute surprise she was present.
I explain to her, “In my previous surgery, you wrenched the shit out of my back. You put my back out. I was down for recovery for my back rather than the D&C. Please be careful with my back this time.”
She looked surprised that I would talk to her like that. Nobody else is going to be my advocate better than me. She mentions that she will use a back brace.
I also have a talk with the anesthesiologists.
I am wheeled into the surgery room. The doctors and crew are wearing what appear to be Columbia or North Face fleece jackets. The air feels like icicles.
My Mom is sitting next to my gurney, holding my hand.
I know the routine. I’ve done it three times before. In order to leave, I have to get up to pee. They need to make sure my plumbing is connected correctly.
I want to ask to go to the restroom, I can see the open door to the restroom from my recovery bay, but I start coughing, uncontrollably. The pain burns down the center of my chest. With each cough I feel the hollow burning of bronchitis.
I also have a splitting headache, but manage to tell the nurse that I need to pee.
She brings a bedpan and sets it next to me on my righthand side.
I do not know who she thinks I am, but even in my anesthetic stupor I know that I do not use port-a-potties unless it is a downright emergency. I am sure as hell not going to use a bedpan, in-front of everyone, especially when my legs are perfectly capable of walking the 10 feet to the toilet. I am certainly not as modest as I could be, but I have to draw the line and it is most definitely here.
I refuse the bedpan. Then, I turn my brain off and no longer hear her talking to me.
Mom tries to explain that something happened to me during surgery. My breathing messed up. It wasn’t good. She said, “It’s not the nurse’s fault that you are not allowed out of bed yet. That’s why you are coughing.”
I don’t respond. I hold it.
Dr. Donato comes by my recovery bay. She says she thinks the pre-cancer results from November 2017 are a fluke.
They put me in the wheelchair to leave and we make a pit stop in the restroom before heading home.
Once home, I make this Facebook post:
We wait for the biopsy results.
October 9, 2019
Jamie and I wanted a biological child.
We dreamed about it together.
In fact, before we were married we decided to try to get pregnant immediately after our “I do’s.” He said there was no time to waste we should start our family immediately.
Two weeks after our wedding, I missed my cycle. With excitement he exclaims, “Go pee on a stick!”
We drive to Walgreens to pick up a box of pregnancy tests. We come home. I pee. We wait.
It does not show any lines, not one single line to say negative and definitely no double lines to say positive. The test is a dud.
We wait an hour before I can produce another test. I set the timer on my phone for five minutes. We wait.
From the moment we decided to make a family together we had been mulling over names. We made countless suggestions of characters from our favorite songs, books, and movie heroes. We picked out what we agreed to be the perfect ones, a moniker unusual enough to be different but not weird and we made sure to also include familial representations.
We daydreamed about him or her, the traits we wanted from each other. I wanted our son to have Jamie’s blue-green eyes with the gold ring around the pupil, his lack of allergies, his quick wit, sharp tongue, mischievous smirk, and the twinkle in his eye. The same twinkle passed down from his Daddy to him – the one that lets me know he’s up to no good and the getting is going to be good. He did not want our children to have my sensitive soul, but instead to be thick skinned; I agree.
He assures me he would instill in our child a sense of fairness and justice. “But,” he warned “he’ll probably be sent home from school for standing up for himself.” ‘Standing up for himself’ is code for fighting. Jamie has never been one to stand down from a bully. “If it’s a her, she’ll pack a devastating hook too.”
Jamie talked about our son’s future appearance. With his Dad’s build and my Dad’s build, we would create a linebacker. We’d spend the next twenty or more years at Little League games.
I would remind Jamie, little girls wrap their Daddy’s around their little fingers and they can also play in Little Leagues.
“BUZZZZZ!!!” The longest five minutes has passed. He gets up to check the results.
From our master bathroom he mumbles one syllable, “nah.”
I can tell from his tone and inflection he is disappointed. He admits, “I never wanted a child before I met you. Now, I wanted this to be positive.”
“Something’s wrong,” I mutter.
He glides towards me. He puts his arms around my waste, “Go to the Dr. Get checked out. Put your mind at ease. You could be stressed out. That won’t help us.” He reassured me that everything is okay.
Besides, he was right, I was worried. The day before we had spent an evening in the emergency room after he cut himself in a cooking accident.
The next day, Tuesday, I call for an appointment. I explain to the lady scheduling my appointment, “I’ve missed my cycle. I took a pregnancy test. It showed negative.”
Two days later I go in to the office, on June 13. I had never been to the OBGYN specifically to pee in a cup. It had always been to play “Fat or Pregnant” where I was always just fat. Well, actually, I’d specifically go in for a yearly exam or a follow-up and just-so-happen to always be fat.
I wait in the exam room. To my surprise I am completely dressed in my own clothes, not in an open gown surrounded only by freezing air.
The nurse walks in, her head bowed, her eyes lowered to the floor. Her voice is somber as she says, “I’m sorry. I have bad news, Miss Conway. You aren’t pregnant.”
I can’t help but to burst into laughter, “I know. I figured. I took a test at home. It showed I’m not pregnant. I needed to come in because I missed my cycle with a negative pregnancy test.”
Her spirit lifts as she explains, “I never know if a woman in your position will be devastated or if her pregnancy test at home showed a false positive. The people answering the phones to set the appointments don’t put that information in the tickets.”
“It sounds like they ought to.”
The nurse agrees and tells me to hold-tight she’ll send someone in to discuss pregnancy with me.
Within a few minutes the nurse practitioner, Meredith, comes in. She says, “Everything looks good in your chart.”
Meredith explains I’d be an older Mom and there are some potential complications, such as becoming pregnant and the estimated percentage of having a mentally handicapped baby. She tells me that I might not have these potential issues if I were younger and in this same predicament of trying to get pregnant. She explains women usually have healthy babies until around 45 years of age but then the chances of birth defects increase significantly.
She goes into great detail explaining how I should track ovulation and that I need to test myself daily for the next month. She tells me to immediately begin prenatal vitamins and take multiple pregnancy tests for the next two weeks, just incase it was too early for the test to read. Then, after two weeks, I should begin the prescribed medicine that will jumpstart my cycle again. She hands me photocopied flyers, more-so instruction sheets, and a sample pack of prenatal vitamins with added folic acid.
I walk out to the car, happily, to text the information to Jamie. It’s not daunting. We can do this. It should be easy – people that don’t even want to reproduce do it every day.
