My cancer’s fancier than yours (neener neener)

I have a fancy cancer, but it’s ok – my cancer center is fancy, too – it has gourmet coffee, delicious lemon bars, and even valet parking. 🙂

By fancy I mean the cancer is an extremely rare malignancy. I’ve read what I could find about it. Less than 200 cases in the literature. Of those, less than a dozen in the site my primary tumor appeared. When that was confirmed, I bought a lottery ticket, because I figure I’m lucky. And I won! But I haven’t cashed in the $4 winner yet. Sometimes quitting while one’s ahead is the way to go.

This thing’s been growing in me awhile – years. My doctor told me it was a cyst and not to worry about it. I asked for a referral to have it removed anyway, because it hurt. A lot. All the time. All right – mostly when I was sitting, but I kept thinking I was injuring my leg exercising. I wasn’t – this thing would bite down and stay that way for awhile – sometimes weeks, mimicking a muscle strain. The doctor who took it out didn’t know what it was. I got to see it, roundish and fleshy. It didn’t look dangerous, but it didn’t look right. By the time the stitches came out, we knew.

Seriously?

That doctor asked how long it had been growing, and when I told her, she said adamantly and loudly in front of her office staff, “You should be dead!” She also let me know that she left part of the tumor in me. I’ve come to regard her as a health despair professional.

I’m recovering from my second surgery, and it’s a real PITA. The cancer is called adenoid cystic eccrine carcinoma, and the tumor was on my posterior thigh near the top. So it’s a rare salivary gland cancer on my posterior. I’m sure I’ve said, “Cancer can kiss my ass,” on more than one occasion. I didn’t mean it literally.

The Center

The treatment center is in Houston – M.D. Anderson, a cluster of tower blocks part of UT Health Science Center. Inside in the waiting areas there are tanks with exotic fish, likely for their calming effect.

Outside are gardens where people go to sit and cry when the lemon bars and fish tanks aren’t enough. And not far from the entrance to the main building there’s a statue of a lovely girl, her arm raised high with a hummingbird drinking from the blossom atop her extended fingers. I was thrilled to see a statue flipping the bird in front of the cancer center. My thoughts exactly.

It’s a 3-hour drive to Houston. Each visit requires a hotel stay. I’ve had scans and ultrasounds, biopsies, two surgeries for tumor removal, another incision for lymphadenectomy. The doctor laughed when I asked if I’d be driving a stick again within 6 weeks. “We’re doing a wide excision,” she said, holding up her index fingers and putting her thumbs together to form a square, or goal posts, or just a big gap representing the excision. She wasn’t kidding.

The angle of the original incision forced them to cut across the muscle tissue. It’s been a month and I still can’t sit comfortably (improving – see update below). I am spending more time listening to music, so that’s nice. I look forward to being able to drive myself places I need to go. Like the grocery store, the park, an art exhibit. I’m able to wrangle socks on and tie both my shoes now, and I can walk around the block. The first time I tried, I got halfway around before my leg tightened up and said, “No more!”

Getting back to the house was excruciating – all stiff and gimpy, gasping obscenities with each slow step. I imagined the neighbors locking themselves in their homes, “Maria, get in the house, now! It’s the zombie apocalypse!”

And my leg swelled up, so I had to get fancy socks. That’s right, white knee-high compression stockings! But I didn’t feel one bit pretty in them. I do have nice legs, even with the scars. I must, or all these doctors wouldn’t keep taking pieces.

Besides the lymphedema, there’s some neuropathy. I didn’t expect that, but it’s not too bad.

The good news is it looks like they got it out. The bad news is that it tends to come back. There are additional unpleasant possibilities, but I’ll leave it at that.

I’m glad they got it out. I still have plenty of things I need to do before I shuffle off this mortal coil. For now I return every four months for scans, which is fine, since the Menil Collection, Contemporary Arts Museum Houston, The Museum of Fine Arts, Houston, and a slew of great galleries are there, like the Nicole Longnecker Gallery, BLUEorange, etc.

Update

It’s been just over 6 weeks. I can sit more comfortably and drive some, so you may see me out and about. Feel free to say hello. If you’re one of the many folks who shy away from the awkwardness of interacting with someone dealing with cancer (or some other seemingly heavy thing), that’s fine – I understand and I’ll try not to be all butt-hurt. 😉
And thanks for letting me share this with you. If you have a lump somewhere, please get it checked out. If it grows and is painful, don’t accept that it’s nothing – get another opinion, because like me, you have plenty of things left to do, too, and you should have the opportunity to do them.

3 Months Out

I’m now at the 3-month mark after the second surgery, and I understand why the doc laughed when I asked about recovery time. I’m amazed that I still have discomfort, but the recovery is going well. I can walk longer distances, drive a stick, climb a flight of stairs, and the best thing – I can sit.

Further Out

It’s regular testing and monitoring these days.