Just a brief update again, I swear I’ll be back in the game tomorrow.
I saw my new new oncologist today. I do not need any radiation or chemotherapy. Well, he was obligated to offer chemo, but the standard for LMS would involve a lot of health risks and at least 12 days in the hospital for about a 1% decrease in my risk of recurrence. I declined.
Leiomyosarcoma is a plain old bad luck cancer. They don’t even know of any risk factors, it just happens. It’s practically unheard of for LMS to initially present in the lungs anyway, but mine was caught at a fraction of the size that they’re usually found.
If I didn’t get CT scans for kidney stones so often, it could have been years before I showed symptoms and by then, my prognosis would have been grim at best. I never thought I would be grateful for kidney stones, but they have literally saved my life.
LMS has a 30-50% recurrence rate, so I will be getting PET scans for a long time, if not the rest of my life, but that is a small price to pay. It’s a good day today.
Today I went back to the surgeon for my follow up visit. I’ve been improving daily, but every time I have an outing, like to my primary care doctor last Friday, or lunch with Ian and his dad Wednesday, I’ve been paying for it with excessive pain later that day and most of the next.
Then there was my first post-op sneeze on Monday morning: agony. I’ve stifled them since, without fail. But as we all know, nothing feels like a good sneeze, and I’m longing for the day that I’m brave enough to try again.
We brought a walker because while I was confident I could make it there, I didn’t know how long it would take and how tired I’d be by the time we were done. I almost feel like my old self with the walker; it supports my right arm enough that it takes two or three times the distance for my incision to start hurting badly.
It ended up taking only an hour, but I’m still glad we brought it.
After I was all checked in and vitals taken and history updated, the nurse griped at me for using the walker while taking us to an exam room. When she handed me a gown and told me to put it on open to the front, Ian realized that she thought I’d had the easy surgery, thoracoscopic, with several small incisions and a couple weeks’ recovery time. I’m doing well enough to fool a surgery clinic nurse!
I saw both residents and the surgeon who operated on me. They were all thrilled with my progress. A medical student removed the suture from one of my chest tube wounds and the resident who pulled them removed the other, then he pulled the tape that’s been covering the dermabond on my surgical incision. I should have asked to see that to really see how long it is; I’ll eventually grab a measuring tape and ask Ian to measure. The worst part was him picking off the sticky residue; it was worse than the suture removal.
They all repeated “extremely rare cancer” several times and were happy to hear that I see the oncologist next week. There are no known risk factors for leiomyosarcoma. I just hit the cancer lottery. Why not the actual lottery? Who knows. Probably because I didn’t buy a ticket.
My surgeon said he’ll see me back in a month, and he fully expects to discharge me from his care at that time. I fully expect to be back at work well before then, albeit without the heavy lifting.
After the clinic visit I got a chest X-ray, and we were all done.
It is amazing how much better my wounds look without the sutures and tape. I haven’t gotten a good look yet, just a bit in the bathroom mirror, but I’m impressed. I still have a ton of sticky residue on my back and side, but we’re getting there. I’ll have to find some adhesive remover. My poor skin has been punished enough.
So tldr, I’m doing well. Thank you guys for all of your support!
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.