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.
I love my job. I do. It’s so weird. Well, it feels like it should be weird. I guess it isn’t. I personalize gifts, so I make even more people happy than I did when I worked in pizza. Although few as happy as kids when they answer the door to a pizza driver. That’s fulfilling.
I have some awesome customers. Today I got a hug from a girl who ordered a watch for her boyfriend. She loved it. The other day I got a hug and a kiss on the cheek from a woman for whom I did three sets of dog tags and a flask. I guess cheek-kissing strangers is what they do in Oklahoma? I was only six when we moved away, so I don’t recall that being a thing.
I do have some slow customers as well, but the worst are the people passing by or just looking. If I had a nickel for every person who asked directions around my little-ass mall I wouldn’t need a raise. I wish I could put up a sign.
But here are some recent gems:
- Do y’all do tattoos here? No. No, we do not. And frankly, dude, if you’re that hip to getting tattoos from a mall kiosk with no autoclave in sight, I don’t really want to get near you.
- What’s an 8×10 album? There’s no way to answer this question without sounding like an asshole. No way.
- I was calling to inquire… Okay, this was on the phone, but still. There’s no need for all that. You’re not calling about a job opening, you’re asking if we do engraving. Just ask. By the time you’re done stumbling over that intro, I could have already answered your question and gone back to what I was doing.
- The Coach House Gifts guy. People stop all the time to ask where a store is, if a certain store is in the mall, if there’s a store that sells whatever item they’re looking for. But this guy. He asked where Coach House Gifts is. I told him they closed a few years ago, because they did. He showed me his smartphone, with the address of the mall and the phone number to the store. I reiterated that they closed. He went to go look because he’s at the right address. A few minutes later, he stopped and asked again. They’re still closed. I told him to go look at the map by the entrance, because it’s not on there. He wandered off again. A few minutes later, he stopped and asked again. This time he added that their phone’s disconnected. That’s because they’re closed, dude. Closed forever. He got mad and went to continue the search. Now, I don’t mind pointing left or right, mostly left, toward the bathrooms, but if a store ain’t here, it ain’t here. No amount of asking will change that. I also don’t answer to throat-clearings or hey.
- The klutz. Some people are clumsy, it’s true. This was a first, though. A guy walked into our five-foot-tall easel sign. It’s a big ole sign with a bright picture on it. I have no idea how he missed it, but he walked into it hard enough to knock it over, and kept going without a word. I picked it up and thanked him. His response? It just fell.
- The drooler. A grown man and his friend were eyeballing the knives in the glass case, and he drooled right on it. Now, I have nothing against drooling when you can’t help it. That’s fine. I don’t care. Every day I work I see people with disabilities walking around with their caretakers. Some of them drool. But this guy immediately sucked the rest of the saliva back into his mouth and wiped his chin, and his buddy laughed at him. Then the two of them hurried off. So I’m guessing he’s not normally a drooler. But come on, man, you could have swiped off the case while you were wiping your face on your sleeve.
- The ones who think I’m furniture. When I ask how are you doing today, I mean it. If you’re having a shit day, I’ll listen and be nice to you. If you’re having the greatest day of your life, I’ll high five you. But when I ask, please answer. It’s great that you’re just looking, but that’s not what I asked. I ignore people who do this. Not that they notice.
- The high-fiver. He was a gem. Just a couple of teenage boys walking up and down the mall, daring each other to attempt to high-five strangers. Of course I high-fived him!
It is fun, though, even with all this. Except for the people who think that twenty minutes is too long to wait.
Today’s Daily Prompt:
Tell us all about the person you were when you were sixteen. If you haven’t yet hit sixteen, tell us about the person you want to be at sixteen.
When I was sixteen…my husband was nine.
We always have such a laugh about the 80s and 90s because of our seven-year age difference.
But no, that’s not the topic at hand.
When I was sixteen…oh. That’s the year I changed. I started out sweet and shy and studious and straight as an arrow.
By the time my seventeenth birthday rolled around, I was still mostly shy. But I was also angry and apathetic and angsty.
I was raped when I was sixteen, and that’s a pretty shit thing to happen to a girl. Or to anyone. I didn’t tell anyone; I didn’t have anyone to tell. My mother would have blamed me. She would still blame me, if I told her today.
I was angry about that, about being raped and about how I knew I would be treated because I’d seen it happen to other girls. Even though I wore hoodies and jeans and off-brand Timberlands and not much makeup at all. I was a girl, and I went to the wrong school.
And then I didn’t care anymore for a while, but sometimes I wanted to care.
We rolled the school once, and it was amazing. The cool kids invited me and included me and treated me like a person. I cared that day, and it felt good. I cared when we all got in trouble, because I was part of something, instead of just the quiet girl who slept in class. The principal called us all into the auditorium, because there was about thirty of us, and he saw me. I know it was because he had never seen me before.
That was a good day.
We got evicted when I was sixteen; that was my fault, indirectly. I used to be friends with a girl downstairs whose mother was friends with the apartment manager. We fought, and her mother complained about me enough, and lied about me enough, that we had to find somewhere else to live. She said I would walk up and down the street drunk.
I didn’t; it was still a few months before I started binge drinking.
But the week of Thanksgiving we did not visit my stepfather’s family as planned; we moved. And we had Short Stop burgers for Thanksgiving dinner.
This sounds so horrible, but it wasn’t, really. Not as much as it sounds now.
I had my little brother. He was two, and he was amazing. He was so adorable and wet-chinned. We were besties.
I spent three weeks of my summer at nerd camp, taking Expository Writing, typing up essay after essay to voluminous praise.
I don’t need sixteen back, though. Twenty-two was so much better.
A short while ago, we heard a gunshot. Well, we thought it was a gunshot, and my mom’s dog came running out of her bedroom to find some people to make her feel safe. We do live outside city limits, so it happens.
Ian went outside to have a look and came back in to tell me that someone shot a skunk. By then, I could smell it, faintly. Poor Amber the dog was pretty scared.
I went to sit on the porch with Ian and my stepdad, and we discussed whether or not someone had called the cops and whether we should call the landlord in the morning, because Ian noticed that there were some drunks outside having a good time at the RV park a couple houses down.
There was another noise, and I saw a flash reflected in a window across the street. We never found out what that was.
The skunk smell was fading, and we saw a truck pull up and stop at our corner, the opposite side of the RV park. It backed up, then pulled forward again and I recognized it as belonging to the volunteer firefighter who lives on the street behind us. I said we didn’t need to worry about calling the cops because he certainly had.
A few minutes later, the cops started showing up. I’m not sure exactly how many cars ended up on our street, but we had a couple of cruisers, an SUV, an ambulance, and Rescue 2 (as Ian said, we’re big time now, got two rescue vehicles).
We heard the party calm down, and the classic COPS sound of beer bottles rattling together as they threw them away. Remind me to tell you about the drunk driver who almost ran over Ian and two of our friends a few years ago. They talked, but we couldn’t hear clearly. An officer went across the street to talk to someone.
Another cop showed up and cleaned out his backseat, putting bags in the trunk, so we figured he was there to take someone to jail. He was; they didn’t put the guy in the car until after the ambulance and Rescue 2 left, possibly with someone, we don’t know.
I came inside, but Ian called me out again to tell me that they’d taken two guns from a guy and were examining them, a handgun and a shotgun. Apparently there was another gunshot as well, so now we have deputies walking the yards with flashlights. We’ll have to check the news tomorrow to find out what happened.
And fortunately, Amber has gotten over her fear, and is now bouncing around begging for treats.
And there’s no more skunk smell.
I think we’re doing pretty well: this is the first excitement of this kind that we’ve had since we moved her in January.
Today my new laptop that my mom got me came in the mail.
It was supposed to come with a year of Microsoft Office 365. One of the first things I noticed when I opened everything up was that the seal was broken on the product key.
Shoulda just packed it up there.
I messed with it for a while before taking my mom to the doctor, and then more when we got home. Ian had enough and called Microsoft. It turns out that yup, my product key was used. That would be why it wouldn’t work. Microsoft said call HP.
Ian called HP.
Keep in mind that I got a lovely little flyer in my package talking up HP’s totes amazing customer support team, who will absolutely do what it takes to fix your problems.
This guy didn’t get the memo. Ian was on the phone with him for a good forty minutes. Nothing was resolved.
Ian called Amazon. He did get another product key, but that one wasn’t any good either. Other than that, there wasn’t anything they could do since I’d already set up the computer.
I called HP. I spent over an hour on the phone, first with a guy who lied to my face (ear?) several times, then his supervisor, then another tech, then another tech. I agreed to let them remote access my computer to verify the problem.
That was something else. I’ve had tech support look around for stuff before, make mistakes, whatever. No biggie. But I’ve never had one google ‘download product key’ on MY computer. I’ve never had one hover the cursor over Microsoft tech support for long enough to make me believe that he was actually about to open a chat session with them while on the phone with me. Man, oh man. Highly entertaining.
Finally they agreed to escalate my complaint, and told me I’d be receiving a call from a case manager tomorrow.