The Ugly Truth About The Franken-Foot – 2022 Update

Originally posted July 18, 2017. Edited September 16, 2022.

Edits are noted. However, I would like to mention that I know so much more about this disease now than I did in 2017, through my own research as well as the research of doctors. More importantly, due to the tireless work and donations to clinical trials across the world funded by the Desmoid Tumor Research Foundation, pharmaceutical companies are taking an interest in formulating therapies to help. If you are randomly in a donating mood, you can donate here:

2017: There are lots of things we keep out of social media. I don’t mean just authors, but all of us. In my case, most of my friends and family know what’s going on, but I have kept the truth from you, my Dear Readers.

It’s time to come clean.

Some of you may recall the strange affair of the Franken-Foot back in November 2015. I was in a cast for 8 weeks (during which time I taped hot guys to my cast when I was bored and posted them on Facebook), then in a plastic boot for 4 weeks.

I went to the CCWA Write On The Red Cedar conference with said boot when I could only walk on my heel. I was like Igor going up and down the halls. Step thunk. Step thunk. Step thunk. Yesssss Massster….But I didn’t have much choice if I was going to attend and present my query letter workshop. So I went.

What most people didn’t ask was why I was in the boot. Torn tendon? Fractured toe? No. It was a “severe and significant deformity.” Quote, unquote. I had a very long and wide metatarsal that created not only a heckuva bunion, but messed up toes and joints and, eventually, my gait. So off I went for reconstructive foot surgery in late 2015. Six titanium pins and a titanium plate later, my foot was fixed.

Well. Kind of.

It never stopped swelling. Muscle and joint movement never came back. I went to physical therapy twice, and while it helped, it wasn’t much. Finally, in December 2016 (over a year after the surgery) I had an MRI. On New Year’s Day, 2017, I received the result.

A “giant cell tumor” approximately 3 inches long, 1.5 inches wide and 1.5 inches thick was residing in my foot.

Dude. That’s, like, ginormous in a foot.

So there I was, saying to myself “Happy Effing 2017!”

Three weeks later in January 2017 I went under the knife to get that thing out.

2022 EDIT: Me and the Sharpie had some fun in OR prep. New pic I never shared.

Only, it can’t come out. Sure, the most ginormous bit was operable and was removed, but there was so much more in the connective tissue of the foot. If it comes out, I lose the use of the foot because all the blood vessels have to come out too. The flesh will die.

Joy ‘n stuff. Not operable aren’t words you want to hear, you know?

The good news is two separate labs checked for malignancy. NONE! It’s totally a benign tumor. Still ginormous, but benign.

[INSERT NOTE: I had a 1/31 deadline for THE LADY AND MR. JONES, and surgery on 1/19. Many thanks to my critique partners Kerri Keberly and Kimberly Kincaid for keeping me going during that time.]

Off to oncology I went after the surgery. Official diagnosis? Desmoid Fibromatosis. A wonderful and aggressive tumor that apparently is difficult to kill off. Ain’t no drugs approved by the FDA for this one.

2022 EDIT: I am so pleased to say that a drug showing promise during clinical trials is being presented to the FDA RIGHT NOW. There are also two other promising clinical trials which will be discussed during the Desmoid Tumor Research Foundation’s annual conference in just a few weeks. I’ll be virtually there with bells on, waiting to hear the updates!

But going back to 2017….So they call together what is called a “tumor board”, aka a group of smart people who will figure out what the heck to do with this tumor. They suggest Sutent.

I wait six weeks. Insurance doesn’t approve. Wanh wanh…

While they work on that, I am given an NSAID to make it calm down and Tamoxifin, which has been clinically shown to suppress desmoid tumors—on occasion.

Tamoxifin, by the way, is what breast cancer survivors take to suppress future cancers. It also sends you into early menopause, which means I was *hot* for about 8 weeks. Like, sweating and burning from the inside out…which means for the first time in my life I wasn’t freezing cold! I actually wore shorts and tanks to bed instead of wool socks, flannel and sweaters!

[INSERT NOTE: My wonderful, wonderful editor and agent had a powwow and gave me a bit of extra time to work on edits for A DANCE WITH SEDUCTION right about this time. Many thanks to both of you!]

So there I was in menopause and popping lots of pills every day hoping the stupid tumor would at least stop growing, if not shrink.

No go. Effer grew back so fast I can document it in pictures. I even made a collage so I could compare pictures. Cuz I’m weird like that. The question, however, is why is this tumor growing in the first place? In my foot, no less. The best guess is the titanium put in way, way, way back in 2015 caused a cell change. In other words, my Franken-Foot was pissed off to have a foreign object in there.

2022 Edit: It was probably not the titanium, but the surgery itself. The cells in a desmoid tumor are fibroblasts (hence it’s other name, desmoid fibromatosis). The cells proliferate to heal a wound, then die back. Basically, mine didn’t die back after the initial surgery, and every surgery after made it worse. They would proliferate faster and faster each time. There are other causes/linked reasons for desmoids, but this is the most likely for me.

So they send me to radiation because the thing is growing so fast, only that appointment doesn’t go all that well. Because the tumor is all over inside the foot, they would have to put my foot in a water bath and radiate the entire foot—which, unfortunately, would most likely end up with me losing the use of the foot. All the muscles would contract and stop working.

More joy.

More Happy Effing 2017.

Still, the radiologist suggested taking out the titanium to see if that would make it stop growing. So off I go for surgery number three in April 2017. More tumor removed (another big’un), third incision in my foot, all titanium bits were chipped out, and voila. I am titanium free—and I even get to keep the hardware.

Truth? The titanium plate is kind of pretty in an oddly morbid way. I might turn it into jewelry when this is all over—assuming it’s not going to cause a tumor in some other bit of me.

2022 Edit: Also truth? This ain’t my first rodeo. Had my leg lengthened 1.25 inches in 1995. Literally cranked it apart 4 times a day. They don’t do that procedure anymore because it so disruptive. So my legs are about the same length, but I ended up with a bum knee, spent 4 months with the “apparatus” on my leg, and using crutches. Then my first day apparatus free, the bone fractured and I spent 2 months in a cast. All during my senior year! I got it all cleared up in time for prom, though. Then the remaining pin in my ankle snapped my freshman year in college and I had to have that taken out. New pic, by the way. Big pins were screwed in my leg, the broken one my ankle, the big metal bar was the crank, and the all the gold-ish pieces are the titanium from my foot.

[INSERT NOTE: Edits came in on THE LADY AND MR. JONES right around April/May, but thankfully I didn’t need any extra time!]

Now here I am, taking oral chemo for leukemia (which I don’t have, but the drug has shown some clinical effect on desmoid tumors and insurance approved it). I can wear sneakers only if the laces are loose, and heels are probably out for the rest of my life (including the kick ass pair of leather boots Mr. A bought me the day I sold my first book). The incision is the third one in my foot and it’s not healing well, because there are only so many times you can cut into the same place. And sometimes I limp, so I look like Igor again. Yesssss Massster…. Still, at present, I am alive and well, and the tumor seems to be in a holding pattern instead of growing, which means I just have to sit tight and take my chemo for months to come.

2022 Edit: The chemo for leukemia didn’t do a darn thing. Sometime in late 2018/early 2019, during which the desmoid tumor continued to grow and I hobbled around, hopped up on nerve blockers and opoids just to get through the day, a clinical trial for a drug called sorafenib showed promise. It is for renal and colon cancer, but my doctor fought to get my insurance company to cover it. It was either that or amputation. I was only 38ish, and my doc didn’t want to do that.

I mean, you can’t undo that decision if you change your mind. :/

After a few months, the tumor stopped hurting. A few months after that, it started to shrink. Suddenly I was no longer in pain. The nerve pain was gone, the deep throbbing I needed the opiods for was gone. But I was on a super high dose, which caused a lot of icky side effects. I won’t go into details, but I needed a lot of Zofran, Compazine, and lots and lots of Lomotil, among other things. Plus, I had to shave my head, which I did live on Facebook.

It is now stabilized, and I’m on the recommended dosage. From time to time the nerve pain and throbbing come back, but mostly, it’s fine. More importantly, it’s stable. Not shrinking, but not growing.


But I may be on chemo forever.

I have hope, however. A new drug targeted for desmoid tumors showed clinical promise and has been submitted to the FDA. Two more drug are in ongoing clinical trials and are also showing clinical promise. These trials are funded in part by the Desmoid Tumor Research Foundation, which is also funded in part by (tax-deductible) donations. Obviously, you don’t have to donate! But I *AM* posting this to raise awareness of a rare disease. The Foundation hopes to increase visibility so more pharmaceutical companies start researching therapies that are successful.

But you know what? I’m damn lucky. I have a husband and child who take care of me when I hurt. An agent and editor who have my back. Friends who bring me meals and check in on me.

More, I’m not in a fight for my life. I’m only fighting for my foot.

It’s different.

The oncology office is a very sobering place. It makes you look at your life and decide what you want, and it forces to you think about your death. That ain’t easy, even when your tumor is non-cancerous. I can’t imagine what it’s like when the dreaded C word crops up. My love and best wishes to all who have been diagnosed.

You know double what? The oncology waiting room is full of courage. It’s full of fight and strength.

Do you know how many people hold hands in the oncology waiting room? Almost all of them. Couples, of course, but moms hold their daughters’ hands, sisters hold sisters’, sons hold their fathers’ hands. No one in that waiting room is alone—even when you arrive alone, the entire waiting room is sending you good vibes. You can feel it in the air.

That’s what I think of when I hobble into the office.

So I guess the Ugly Truth about the Franken-Foot has turned into something positive after all. I get to witness love and courage and strength every time I go to the doctor’s office, and I get to send positive vibes to strangers. How cool is that? It’s changed me, and I hope for those of you who never been, this post changes you.

For those of you who have been to that waiting room, all my love.

P.S. I’m going to be totally rocking sneakers with my dresses at RWA 2017! Stay tuned on Facebook for pics!

2022 EDIT: I *DID* rock the Chucks at RWA! Pre-shaved head, of course!

Posted in Alyssa Alexander.