Here’s my submission to Kleroteria:
Have you ever just...not told anyone something? Not purposefully keeping a secret, but incidentally? I’m sure we all have.
I don’t mean the massive kind of thing that your mind jumps to when someone requests that you “tell me something no one else knows;” I mean something that doesn’t matter at all in the grand scheme of things.
When I was ten or so, I almost drowned in the Atlantic Ocean. The current caught me and the waves crashed me around and around until I knew I was going to die. I didn’t, as you may have guessed, but I also didn’t tell anyone when I survived. It was summer, and my sister and I were with our father and stepmother, on our annual summer road trip to see his side of the family. It was some New England beach that I don’t remember aside from the heaviness of the water and the sharpness of the tiny grains of sand.
I kept the story to myself for over twenty years before telling my brother.
The needless secrecy of it has stayed with me ever since, though. Why didn’t I say anything at the time? I’d come to the conclusion that I was embarrassed at letting nature get the best of me, but now I’m not so sure. I think I just didn’t want to worry my father. I didn’t want to risk losing these few and far-between opportunities for, well, risk.
I was not an adventurous child. I was painfully shy, and I mean *painfully* shy. My mother broke her ankle once, and I was too shy to fetch the neighbor for help, but in those brief summer visits with my father, it was different. I was different. I learned to ride a bicycle, complete with falling and skinned knees and bloody scrapes. I made friends quickly and effortlessly, friends that I still have to this very day. I built odd things in my father’s workshops, and I drank gallons of water from pointed paper cups when I would go with him to the oil rigs where he did mystical electrician things.
And I swam in the ocean without fear.
I wanted to write to you about pain and fear and cancer because that is my life now, but when I finally opened this window and started typing, those things fell away and I remembered the weight of the water and my struggle for light and breath.
Tell me, what is a secret that you’ve never shared with anyone? How long have you been holding it tight to yourself? Do you want to let it go, or is it more comfortable to keep it? Let me know.
So it’s been a while. I didn’t win NaNoWriMo last year. I didn’t get back into posting this month as I had originally planned. I didn’t do a lot of things, but that’s because there’s been some big changes.
I’m on my phone so at this time I’m not going to link to old posts about this stuff, but I may come back and do it when I feel better.
Remember a few years back when they found that adrenal tumor when I had a kidney stone? I was having my annual scans to keep an eye on it, and in June 2017 my endocrinologist called to tell me now I had a tumor in my right lung.
I’ve been seeing an oncologist for that, and for a year and a half he kept telling me it’s not cancer and not to worry about it, we’ll just have an annual look at it for a few years.
In August he said, “oh, has anyone told you about your thyroid?” Direct quote. Uh, no, you’re the one who’s supposed to tell me about it, no one else looks that high in my body. There’s a large cyst on the left and several small ones on the right.
You can probably guess where this is going.
I had my annual follow up with endocrinology, and they scheduled me for a thyroid ultrasound. Then a biopsy because while the right lobe has normal, age-related cysts, the left side has a four centimeter complex cyst that is suspicious. They schedule a fine needle aspiration biopsy.
I got a new primary care doctor last May, and she didn’t like the look of the lung tumor. She referred me to the cancer center at the medical school here. Great place.
I had my first appointment with the pulmonary oncologist in October, and he sent me for a PET scan. Both my lung and thyroid lit up. The oncologist called me and used the word “worrisome.”
I got my thyroid biopsy. Not fun, but in hindsight, a walk in the park. I waited for results.
A pulmonologist called me to discuss scheduling a bronchoscopy to biopsy the lung tumor.
My thyroid biopsy came back inconclusive; they decided to do further testing on the samples.
My bronchoscopy went perfectly well. I was hoarse off and on for a few days but barely had a sore throat. I could, however, feel the spot deep inside my chest where they had poked and poked, trying to get a piece of tumor. That was pretty weird.
The pulmonologist was not entirely confident that they had gotten a representative enough sample, especially considering the tumor was between bronchial branches, not really near either.
My thyroid biopsy came back fine.
The pulmonologist let me know that the Tumor Board was going to discuss my case sooner than expected. I am still tickled pink at the title “Tumor Board.” Anyway, there’s a lot of big shot doctors on this board, and they unanimously agreed that lung tumor needs to come out.
Fortunately, Ian and I had already discussed this amongst ourselves and come to the same conclusion. If they were going to try a surgical biopsy, we were going to ask that they just take the thing out if possible.
We met the cardiothoracic surgeon on December 21. We thought I was going to get a biopsy or wedge resection. He wanted to do a lobectomy. This was when it started getting scarier by the minute.
A surgical biopsy or resection can usually be done with cameras and small incisions. On me, a lobectomy would have to be done by thoracotomy: a large incision from my side wrapping beneath my shoulder blade, a stay in ICU before transfer to a regular room, chest tubes, and an epidural catheter for pain management.
We agreed, and he scheduled the surgery right then and there for January 9.
The only people who knew everything that was going on at that point were my sister and my manager. My parents live with us, and we hadn’t told them yet.
On the 22nd, my stepdad drove three hours to pick up my brother and bring him to our house for Christmas. When they got home, my mom was bragging about her weight loss. I announced that I was losing weight next month, however much a right middle lobe weighs. My mom asked why. I said “cancer,” and shrugged. I don’t think any of them believed me yet, not that I blame them.
How would you spring this on your family? Would you?
My brother had a lot of questions later, as our parents were outside smoking or after they went to bed. I didn’t tell him that I hadn’t told him before because I didn’t want him to freak out and not visit.
My brother-in-law and his family came to exchange gifts on Christmas Eve, and he made a joke about a tumor. Later, my husband pulled him to the side and told him what’s going on. Oh, the horror and remorse on his face! I had to repeatedly reassure him that I knew it was a joke, I swear it’s okay.
On Christmas my dad called, and I told him. It was his mother who died from lung cancer a few years ago, and he didn’t take the news well. The next day he called again to tell me he was coming to visit from Colorado.
He spent the weekend with us, and it was nice. He told his side of the family about me, and two of my aunts offered to come and stay with us to help me as long as I needed.
By New Year’s Eve, everyone was back in their own corners of the country, and we were counting down the days until surgery.
My last week at work everyone told me good luck and that I would be fine.
And then it was the day before.
And somehow, someone screwed up and rescheduled me for the 10th without letting me know. That is a whole post of its own. It was nice to have an extra day of eating food and being active, though.
We arrived at the hospital at five in the morning. After I registered, transport took me and two other patients and our families to the surgical unit–at least, she tried. We got stuck in the elevator.
Finally security and cops got us out and we went to another elevator bay. This one worked fine.
I got my IV and my markups and my wipedown and all the normal preop stuff, and then I had to kiss Ian goodbye because it was time for my epidural and then straight to surgery.
From talking to women and googling, my epidural pretty much just shared a name with the epidural women in labor get. The anesthesiologists cleaned me and anesthetized a spot between my shoulder blades and then started poking around. Apparently a thoracic epidural is a lot harder to get exact. But they got it, and wished me luck and wheeled me into surgery.
About five hours later I woke up in ICU without my right lower lobe. It turns out the tumor only appeared to be in the middle lobe because it was in the top of the lower lobe, which shifted up and behind the middle lobe when I would lie down for the scans.
I don’t know how long it was after I woke up before I could say anything besides “shoulder” and “pee.” My right shoulder was agony, and I had to pee. They gave me drugs and told me I had a catheter, and I finally got the picture.
I was so happy to see Ian. He has been my rock through all of this, and I love him so much more than I can ever say.
I had surgery Thursday, I was walking Friday, my Foley catheter came out Sunday, my epidural catheter and dual chest tubes came out Monday, and I came home Tuesday.
I do plan to write a day-by-day, and posts about walking and sitting and pain management and all the different tubes and the cafeteria debacle, but I realize that this post is getting waaay out of hand as far as length.
I came home with two kinds of pain pills, and one has already turned into ibuprofen. I am coming along fantastically, and hold out hope that I will be able to return to light duty at work on January 31.
But it isn’t over. The surgeon called on Wednesday and told us that it was leiomyosarcoma, a soft tissue cancer. The good news is that the margins were all clear, and the lymph nodes he removed were also all clear. The problem is that I have other questionable tumors in my body, and LMS can sometimes lie dormant for years before busting out like the Kool-Aid Man.
I have my surgical follow up next Friday, and they will probably remove the sutures from my chest tubes. My large incision is nearly a foot of nothing but dermabond and tape; my surgeon insisted that the residents closing me up take extra time and care to “make it pretty for the young lady,” with no ugly staple or suture marks. Thank you, Dr White!
The next week I have a follow up with the pulmonary oncologist, and hopefully we can work out a plan for next steps. Do we take out the thyroid and adrenal gland? Do we wait and watch? I say take them all; I have already had the worst, most painful surgery they can throw at me.
I will definitely have to have semi-annual scans whether I have more surgeries or not, but as of right now, it is nearly certain that my lung is already cured. I will most likely not need chemotherapy or radiation.
Last year was hard. The last quarter of last year was the hardest of all, and my primary care doctor and I worked to find a way to ease my depression and anxiety. Just after my bronchoscopy I started taking Buspar for anxiety. I planned to continue until surgery because it did help the anxiety some, even though it caused crazy vivid dreams when it wasn’t causing insomnia. The side effects were my reason for asking to try something else after surgery. At least, that was my plan.
Now I’m home from surgery and still taking the Buspar because it’s different. I’m different. It sounds so cheesy and laughable, but I feel like I have a new lease on life. I feel like I dodged a bullet, and it is one hundred percent attributable to my primary care doctor. I saw her yesterday, and thanked her.
So I keep taking Buspar, and I’m less anxious. I’m less depressed. It’s like they took part of the depression when they took that chunk of lung. I feel grateful, and I want to laugh at myself for becoming one of those born-again cancer survivors.
I am amazed at how I can look back at my life and see the good that came from bad things. I feel better. I have a wonderful husband. I’ve regained a friendship with someone I’ve known for over 25 years but grown apart from. I have blogger friends who have become pillars in my support system.
I am lucky. And I’m glad. Thank you.
Dogsbody returned to the great brick building and reentered the revolving glass doors. The same receptionist sat at the same front desk, and she greeted him with the same warmth.
“Mr. Walker, right? Seventeen, sir.”
He nodded sheepishly in her general direction and tugged the collar of his coat up the tiniest bit. The smudge on the up button from his previous visit had been carefully wiped away, and Dogsbody stared at the button for a moment before touching it, wondering at how quickly even an entire person could also be wiped away, as if that person had never existed.
Again as before, Dogsbody was the only person in the elevator, but this time he appreciated the matte finish of the interior, dropping his coat collar for a brief moment of normalcy. He watched the numbers light up sequentially.
The elevator dinged, and Dogsbody exited to the hallway with the lone door and the sign calmly and quietly declaring Mr Walker. When Dogsbody stepped up to the door, it fell open before him before he had a chance to knock his raised knuckles against it, and there sat Mr. Walker himself, in the same position at the same desk, in the same suit of clothes.
Fora moment Dogsbody wondered if Mr. Walker were human at all, or instead a robot or maybe even a cleverly designed hologram.
“Sit down, my good man, sit down. You have satisfactorily completed the assignment that I have given you, and that’s good. That’s very good. It would have been quite the disappointment had you not done so, and when I’m disappointed, well, sometimes bad things happen.” Mr. Walker made the same gesture at the empty chair before his desk, and Dogsbody slid to it as thought magnetized.
“Yes sir.” The only words Dogsbody could manage to scrounge up from his blankly frenzied mind dropped from his scarred lips like rocks.
“No need to talk. You have one step left before we can reinstate you into the human race. But as I told you before, it isn’t a quick sort of thing; it’ll take you several months of surgery and rehabilitation. Once again, are you up to the task? You can nod.”
“Very good. I have three more letters that must be mailed for a very important client. A very important client. As before, they must all be mailed from different zip codes, but that shouldn’t be a problem for you, should it? It’s not like you have anything better to do with your time.” Mr. Walker laughed, and the harsh sound echoed against the plain walls of the warehouse-sized office.
Dogsbody didn’t move a muscle.
“Well then.” Mr. Walked opened the top right-hand drawer of his desk and removed three innocuous enough letters. “Here is your precious cargo.” He slid the envelopes across the desk toward Dogsbody. “Go ahead. Get up and take them and be on your way. I’ll be in touch.”
Dogsbody blinked twice, slowly, and rose from the chair, pressing down on the arms with such force that his fingers turned white. He took the three steps forward to Mr. Walker’s desk and tentatively reached out a hand to pick up the letters. He looked as though he was afraid that Mr. Walker would suddenly snap at him and take a hand off, leaving him to bleed out on the floor.
In fact, this was exactly what Dogsbody was afraid of, in the visceral depths of his mind, those places that he wasn’t fond of going but was somehow forced to visit far too often.
Mr. Walker regarded him expressionlessly. Dogsbody slid his fingers across the paper and picked them up, reflexively reaching to his breast pocket to tuck them safely away. Mr. Walker nodded his approval and looked down at the papers he shuffled across his desk, dismissing Dogsbody without another word.
Dogsbody didn’t realize that he had been holding his breath until the elevator doors slid closed behind him and he staggered, nearly falling. He took great, heaving breaths of the air untainted by Mr. Walker’s aura, and thought he felt a tear slip from his eye. He reached up to wipe his face, but felt nothing.
When the elevator reached the ground floor, Dogsbody exited, nodding a goodbye to the receptionist, whose smile remained bright as ever. Fifteen blocks away, he came to the nearest post office. He pulled out the first letter his questing fingers came to, and glanced at it before dropping it into the box. It was addressed to Shepard Strom. The name didn’t ring a bell.
The water lapped against the side of the tub, waves crashing on a porcelain shore. She brought her foot back underneath the water, and it slopped over the edge, wetting the ancient blue bath towel she used as a rug there.
She turned her head to nestle her chin into the hollow of her shoulder. Slowly, her eyes began to close of their own accord. The chain lock rattled against her front door, and the sound caused her eyelids to fly open. She shot upright in the tub, gripping the sides until her knuckles turned white and her heart raced out of control. A voice, faint from distance and solid wood doors, called to her.
“Sorry, wrong apartment.”
Recognizing the voice as a frequent visitor of her neighbor’s, she relaxed back into the water, sliding down to the welcoming warmth. Her pulse slowed its pounding in her ears, and she lifted her right foot to plug the open mouth of the faucet with her big toe.
The suds were subsiding, and she felt around beneath herself for the cap of her disposable razor. She didn’t find it; she assumed that when she pulled the plug, it would be lost forever down the drain whose crosshairs had rusted away years ago. When she rose to grab her towel and the plug’s chain slipped through her fingers, she had already forgotten to watch for its journey into oblivion.
Perry tried to breathe as quietly as possible in his bed; the monster might hear him and come out of his closet.
He had the covers pulled up to his nose, resting on his upper lip, and tucked in tightly all the way around his body. His small frame shuddered as he dared to think about what the closet monster could do to him.
Was that faint sound its claws tick-tacking on the hardwood floor? The covers inched past Perry’s nose. His eyes widened with fear.
He pulled the covers over his head, and a soft weight jostled him. It was on top of the covers. Perry stifled a scream.
Small rhythmic vibrations roused his curiosity, and since he hadn’t been murdered yet, Perry dared take a peek at the foot of his bed.
No monsters, only his cat Harold.
whistling in the dark
a sudden chill, a glance back
nothing to be seen