I’m not doing the best. I don’t even know what all I’ve told y’all, but there’s been a ton of cancer garbage and other health crap going on for the past three years.
I want to say that for the most part, I’ve adapted and overcome, but I might be fooling myself. Or I might be doing an excellent job, I just can’t see it right now because it’s a shit mental health period.
My guts hurt. I had colitis a couple of times last year, and I have diverticulosis, so it could be either of those, or something else entirely.
My brain is fuzzy. I can’t remember things like I used to. I can’t use words like I used to. I can’t make connections in my head. I feel like an idiot trying to make art anymore because I’m no good at it.
I want to do so many things but I’m discouraged. I tried to tell myself yesterday that it’s okay to stay in bed all day if you feel bad, that it’s okay to take a bunch of naps in one day if you can’t stay awake. Today I’m still in bed because it hurts, but I can’t believe myself when I say it’s okay.
My brain says I haven’t had surgery, so there’s absolutely no possible reason that I should stay in bed.
My brain is an asshole sometimes.
I’m dizzy and my head hurts all the time and my vision is going to hell in a hand basket. I’m worried there’s cancer in my brain now. I want to tell myself that’s silly, but is it really? I don’t know anymore.
I’m a huge fan of the “ignore it and it’ll go away” philosophy. I feel like that’s weird. I tried to do that with my adrenal tumor and they just found lung cancer. I tried to do it with my reproductive system and it just hurt worse and worse until they took it all out. I tried to do it with my neurostimulator and they had to take that out. Maybe I’m just not as good at ignoring things as I think I am. Except my own friggin mental health. I’m super great at ignoring that.
I plan so many projects and I want to try so many new things and then I kick myself when I physically cannot do them.
Sometimes I wonder why I keep trying.
I tried to take a cognitive function test yesterday and I learned that I can’t do the logic puzzles that I used to love so much. They’ve become secrets of the universe to me.
I don’t even know how much I’m supposed to feel like garbage with all the hormones that are gone and can’t be replaced and all the hormones that are replaced with pills and do I even know what I’m talking about anymore?
I don’t know.
Maybe if I start writing again things will get better. Maybe they won’t.
I do feel a little better after all this though. I need to go blow my nose.
I hope you’ve stuck it out this far, because I didn’t think to say this earlier. I’m not dumping this for pity or condolences. It is what it is. I’m dumping this so maybe someone else having a rough go of it won’t feel so lonely.
Life isn’t always peaches and cream; I guess I know that as well as anyone.
I got dressed today. On a scale of 1-100, getting dressed always takes me up at least one point. I can’t sit and put makeup on today though.
When I feel better I need to make an art caddy for these days when I can’t sit at my desk and create.
Yes, April, even though you said you feel like a fraud with zero talent, that desire to make art is still there. Maybe take that as a sign that you’re not entirely hopeless and uninspired.
Oh, I make notebooks now. I would love to send you a care package of tiny notebooks and art and who-knows-what if you want one.
I think I’m gonna go catch up on my collage fodder tutorial videos now. Thanks for being here.
When she leaned down to retrieve her bag from the passenger floorboard she caught a glimpse of movement in the side mirror. She smiled crookedly as she opened the door, waiting for him to wrap his arms around her, holding her close in that special way that kept her warm in the cold northern nights.
He didn’t, and she turned around, a question on her face. He wasn’t there at all. The movement must have been more of the falling leaves that blanketed the ground as far as she could see, except for her pair of tire tracks weaving among the trees.
She swallowed the lump in her throat and slammed the car door. A tear tracked its way down her left cheek as she stepped carefully around to the back of the truck to gather the grocery bags. Some days, it felt like he’d been gone at least a hundred years, and some days like he had just stepped outside for a quick smoke.
Two bags swinging softly in each hand, she trekked through the yard and onto the front porch, where she spun once, scanning the acres between her steps and the long dirt road to nowhere.
Not a soul.
She sniffed, and rubbed the tear from her face with the back of her hand.
As she unpacked the groceries she realized that she’d bought his favorites once again: mac and cheese and those stupidly expensive all-beef bun-length hot dogs. She left everything where it was on the kitchen counter and walked, head down, to their–her–bedroom to throw herself down on the mattress and sob and sob and sob until she was red and puffy.
It was the next morning when she woke with swollen eyes and a throbbing headache. She opened her eyes and stared at the thin strip of sunlight tapering across the wallpaper next to the bathroom door.
His voice echoed in her head, “just where it gets in my eyes when I try to shave.”
She closed her own eyes again, squeezing them until all she saw was the brilliant kaleidoscope of pressure on her optic nerves. This time, when she opened her eyes, his presence was completely gone.
She kicked off her shoes and went downstairs to finish putting the food away, but had to stop and laugh at the wreck the neighbor’s dog had made of her kitchen. She knew it was old Rider; the devil was lying underneath her kitchen table, tongue hanging out on the floor, shreds of fancy hot dog wrapper scattered around his swollen gut.
“I didn’t give the front door that extra push, did I, boy?” She laughed again, louder. “I forgot how poorly you resist temptation.”
Rider startled awake at the sound of her voice, and began to scramble guiltily to his feet, but she knelt to scratch behind his ears.
“Good boy, Rider. Good boy.”
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.
Tonight I went to the emergency room for a migraine. That’s a special kind of hell.
I’ve had migraines for all of my adult life, and they suck. I have yet to find a prophylactic that works for them, and an allergy to sumatriptan is just about the worst drug allergy someone with 15-20 migraines per month can have.
I took one of my barbiturates shortly after the migraine came on today, and then another two hours later. I felt better for a little while, but then it got worse and kept on worsening. So eventually I went and put my shoes on when Ian told me to go put my shoes on so he could take me to the hospital.
When we got there, it looked like it might not be so bad, because we could only see two people in the waiting room. As a former emergency clerk, I knew that could mean either that it was slow or that the ER was full.
It turned out to be pretty full, and we waited out there for an hour-ish. I think. I didn’t check my watch, and I had a dang migraine.
I should have brought a pair of earplugs.
I sat there wearing my sunglasses at night, leaning on my sweetie’s shoulder, waiting and waiting and unable to do anything but think.
And wait as the patients rolled in in waves.
The waiting room is a pretty shit place for someone with a migraine. There are super bright fluorescent lights overhead. There is always a ton of people unable to moderate the volume of their voices. And of course, there’s always the kids whose parents are completely unable or unwilling to teach them how to sit quietly.
The registration clerks were having a good old time laughing and chatting about Sprite. Don’t ask me why. I missed that part.
The triage nurse was hollering a name every few minutes.
The door to the outside world huffed and wheezed every few minutes.
The door to the inner sanctum of the emergency department squeaked and wailed open and shut every time a nurse came to call someone back or let someone out to go home.
My stomach turned, and I let Ian know I was going to vomit before getting up and meandering to the single occupant and unisex ER bathroom. There was a woman inside talking on the phone, as I heard before even getting all the way to the door. I did an about=face and headed for the bathroom outside of the ER, in the hospital proper. Housekeeping was blocking the door.
I leaned my back against the wall and closed my eyes. I said fuck it and walked outside in case I was still going to vomit, even though I was pretty sure I had my stomach under tight control. I leaned against my arms on the outside of the building, breathing.
I would say I almost threw up, but by that point, it wasn’t that close. I had a handle on it and forced everything back down, telling it to stay down. And I walked back inside to lean on my husband some more.
I put my fingers in my ears when I couldn’t take any more noise, and immediately afterward,three kids showed up and started having a blast in the waiting room. I thought there were only two, but Ian told me there were three after we left. I heard one dancing, and one rapping. Neither sounded awesome at either. Finally, they went to the other side of the waiting area. Apparently that was in large part due to how scary my husband gets when he goes into protective mama bear mode, which is absolutely going to happen any time there’s something wrong with me.
A nurse came out and called my name, and she led us back to a treatment room next door to one of the bathrooms, which would have been nicer had it happened about thirty minutes earlier. I’m not the best at puking in a bucket.
While she was tap-tap-tapping on her keyboard, verifying my medical history, the doctor came in. I was happy to see that he’s one who’s seen me for migraine before, and he believes me and knows I’m not there to get high. Since my mother is a drug-seeking addict, this is the most important thing for me to look for in a doctor.
Kidney stones will show up on imaging, but there’s no way for them to prove that anyone actually has a migraine, so I’ve been treated with a grain of salt more than a handful of times.
I hate that.
I just want to live my life. I can’t live my life when I have a severe migraine. I had planned to go help my husband with a couple of repairs for his second job. I had planned to go for a run and get a new PR. I wanted to paint some pictures because we watched some abstract art videos on YouTube last night, and dude had some techniques I want to try out.
I can go to the ER and get some medicine, but I still can’t live my life afterward, even if I walk out of there with a pain level of less than four, because I’m either ready for bed or too fucked up to see straight.
He’d already gone and attempted the repairs (they sent a part that was broken in a different way from the one it was supposed to replace), and there’s no way I can walk a mile, let alone run any distance at all after some dilaudid and phenergan.
I suppose I could have tried to paint, but I’m quite sure I would have knocked over my dirty water and/or my paint palette. Hell, I’ve been working on this post for well over half an hour now, and it shouldn’t take me more than fifteen minutes to write this.
And my doctor doesn’t want to refer me to a neurologist until he’s exhausted every single possibility he know of. Most recently I took Depakote for two and a half days until I was suicidal. I also had two migraines during that time.
Maybe next week will be the winner. I go back to the doctor next Thursday.
But I will give them this: One of the PAs put me on Prozac and Klonopin in June, and I have never felt so good in my life. Swear. I’m only extremely rarely depressed or anxious anymore, and most of the time when I do feel blue out of the blue, it’s only a sign that I’m going to have a migraine in a couple of hours. Which is a downer in itself.
I know I haven’t talked about my health here in a while, and my health is the main reason that I took such a break from blogging and am only now easing myself back in. But I’m okay, no need to worry. I’m actually better than ever, thanks to the Prozac.
I’ll fill you in some more soon. But hey, thanks for being here and reading what I write.
Btdubs, did y’all catch that? My fat ass runs now. I can’t wait for it to not be ninety degrees outside and thick as soup thanks to high humidity.
My head hangs down as I lean forward, white-knuckling the edge of the bathroom sink. I feel my stomach twist and turn, and I grimace, struggling to hold my breakfast down.
I lift my head and open my eyes. I look rough. My eyes are dark pits in my skull, my mouth a crooked red slash across the bottom of my face. When I blink, my eyelids are like sandpaper, the grit scraping the surface of my eyeballs.
I close my eyes and drop my head.
When I open my eyes again I stagger, the sink somehow escaping my grip, and I stand on the rocky shore of an unknown lake in the middle of the night. The stars spill across the sky, and I know why it’s called the Milky Way.
The air is so still around me, but I see the trees on the other side of the lake wave their branches in a slight breeze. The breeze ripples the surface of the water and makes its way to me, riffling the hair that lies across my forehead. It’s cool and clean and crisp, and I breathe it in greedily.
I turn to my right, and the moon hangs full in the sky.
I blink, and I’m standing in front of the mirror again, away from the sink. The urge to sit in the bathtub and slit my wrists is gone, for now, and the smell of that nighttime breeze still fills my nostrils with hope.
I felt off when I clocked out at work last night. It didn’t wipe the end-of-my-shift-screw-you-guys grin off my face, but there was still this tiny collapsing place inside my chest where things should have been perfectly normal. It didn’t go away when I got home, either.
I sat on the couch until four o’clock in the morning eating ice cream straight from the carton and watching YouTube videos on how to groom llamas, which is normally a surefire crowd pleaser in this household, thankyouverymuch, but it didn’t work.
I say I only sat there until four because that’s my best estimate of when I passed out and dropped the ice cream to melt onto my favorite rug. That kind of pissed me off when I woke up with a crick in my neck and my ice cream spoon rattling against my molars. The spot of warmth snuggled up in the crook of my knees told me that my cat, Amelia, hadn’t given up on me just yet, though.
I sat up and swung my feet to the floor, and that’s when I found the ice cream. I made sure to thank Amelia for slacking in the dark of night. She meowed and walked away. I always knew she didn’t care about that rug. She pukes on it nearly every day. This morning the only thing on the rug was ice cream, so I guess I should have counted myself lucky. But I didn’t.
I stood up and felt that hollow space inside my chest again, aching for attention, but I didn’t know what kind of attention to give it. It didn’t feel like loneliness, or panic, or anxiety, or depression, or any one of the hundred bad things I had experience with.
So I did what I rend to do in these situations.
I ignored it.
I stumbled into the kitchen to grab a towel for the ice cream, but first I opened the fridge and took a good slug of OJ straight from the jug. I don’t have a lot to do with plates and bowls at home. I do know how to behave in public, though, so don’t worry about that. When I put the orange juice back on the top shelf of the fridge, I noticed that I still had an egg carton sitting there, which was weird.
I could have sworn that I’d eaten the last egg a couple days earlier, so I pulled the carton out and set it on the counter. I didn’t bother to open it. The weight already told me that it was empty, that I’d simply been too lazy or inattentive to throw it away instead of putting it back into the fridge to tease myself with the promise of eggs.
I’m such an asshole sometimes.
Amelia meowed at my feet and rubbed against my leg, and I leaned down to pet her and noticed that she waws only announcing that she had recently vomited on the very edge of the carpet, millimeters from the much more easily cleaned linoleum. That cat, I swear. She’s going to be the death of me one day. Probably in some highly unusual way.
I grabbed the dishtowel from the counter and took a step toward the living room to clean up the ice cream, and that’s when it hit me. It was my damn birthday. That’s what that feeling in my chest was all about. Now that I’d realized it was my birthday, I did recognize its unique emptiness and flutterings of nobody cares-ness.
I tried to shrug it off. Nobody knew or cared about my birthday anymore. I had no family and no friends, and i wouldn’t let any of my coworkers get close enough to me to know if I’d worn the same shirt the day before. For some reason, this year it didn’t work. I tried to push the whole thing to the back of my mind and continued to the living room.
I scrubbed the ice cream stain for a few moments, my knees reddening from the rough carpet fibers grinding into the tender skin. Finally , I dropped the towel and turned to plop myself on the couch, where I dropped my head into my hands and sobbed. As usual, Amelia failed to come and offer me any hint of comfort. She watched me from the opposite corner of the couch, expressionless as only a cat can be.