Story Time

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.


The Stain

I’ve been having some problems with not being able to read blogs. I’m not getting new posts from y’all in my email or reader, and I’m not sure why.

I miss reading y’all, but I’ve had bigger fish to fry lately. I spent last Thursday through Sunday in the hospital with numbness and tingling and weakness in my arms and legs and face, extreme fatigue, and a couple of other neurological symptoms.

So far all we know for sure is that I don’t have MS, a brain tumor, or a stroke. I have a nerve conduction study and an EMG tomorrow morning. We’ll see where we are after that.

But I’m getting some of my energy back, so here’s The Stain, watercolor on 12×12 watercolor paper.


NaNoPaintMo Wrapup

BAM. So what do you think? November wouldn’t all fit on the dining room table, so I left off the NSFW paintings and a couple of bonus paintings.

I think it was a rousing success. I even made a Facebook page here.

I have some commissions I really need to get around to, but I’ve been fruitlessly fighting neuropathy and paresthesia and doctors to get answers. I think it’s time to find a new primary care; this one told me today that he’s not saying he doesn’t believe me, but it’s probably just anxiety so here, double up on your Klonopin and go home, April, jeez.

I hate this year.

But I painted this today.

Here’s Anathema, acrylic on 16×20 canvas.


The Fourth Circle

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.

Much love.