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Jul 18

The Ugly Truth About The Franken-Foot

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.

Example of a Hot Guy on my cast.

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. 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. 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.

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 removed, 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.

[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.

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!

14 comments

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  1. Kate

    Rock on, my warrior! Thank you for sharing <3

    1. Alyssa Alexander

      From one warrior to another…thanks for hobbling your way to the signing tonight!!

  2. Lucy Kubash

    A heartfelt and honest post. As always, wishing my fellow MMRWA friend the best. Congratulations on the new release with the fabulous cover! Have a great time at conference. Love ya!

    1. Alyssa Alexander

      Back at’cha, Lucy! Plus, honesty is always the best policy, and if going to wear sneakers next week, I might as well be honest as to why!

  3. Loralee Lillibridge

    Alyssa, your uplifting post had me cringing at what you’ve had to endure, shedding tears as you shared your innermost emotions, and smiling at your witty references to Franken-Foot , You are one of the most courageous young women I know – not only for sharing your medical journey but because, out of all your own pain and frustration for such a long time, you found the good things to focus on and share. You saw blessings in your life that others in that oncology room did not have and sent positive thoughts and compassionate love to them. You have faced the mountain and never quit climbing toward the top, despite an avalanche of problems. Cheers, my friend! You inspire us all. Wear the sneakers and rock on!

    1. Alyssa Alexander

      You’ve climbed a mountain or two yourself, my friend! Every journey is just that–a journey. It’s only good or bad if a person assigns the label, and all the hardships are only hard if we let them be.

      So I’m winging my good thoughts to everyone struggling with their own journeys. May they see the positive before the negative.

  4. Kimmie

    Love the last few paragraphs of this the most. Not today, my friend. Not today.

    1. Alyssa Alexander

      Word. Every day above ground is a gift, no matter what craziness is in it!

  5. Linda Fletcher

    Alyssa, you’re a poster child for making the most out of whatever you’re dealt. Such a lovely, thoughtful post, from a strong and fabulous woman. I hope you have a wonderful time at Nationals–rock those sneakers as only you can!

    1. Alyssa Alexander

      There’s always lemonade to be made with lemons–just takes a little sugar and a bit of elbow grease. Or, you know, fun sneakers. 🙂 Thanks, Linda!

  6. Diane Burton

    You are such an inspiration, lady. From the Curse of FrankenFoot to A Wonderful Life. I am so sorry you’ve had to endure such pain and worry. Yet I’m humbled by your spirit. You’re a fighter. Take lots of pictures at the conference of your dresses and the rocking sneakers. Hugs.

    1. Alyssa Alexander

      Thanks, Diane! It IS A Wonderful Life! Pics will definitely be forthcoming!

  7. Debbie

    Ditto what everyone else has said! You are a true inspiration with so much get-up-and-go, even with a Franken-Foot! It is a truly amazing person who can see the positive in any situation – you are amazing! Rock those sneakers and have a great time! You have accomplished so much and deserve all the good times coming your way. Can’t wait to see the photos!

    1. Alyssa Alexander

      Thank you so much, Debbie! Staying positive is tough from time to time, but there’s so much good if one just looks for it. Medication that didn’t exist years ago, experienced doctors who care, supportive friends and family–and all the good vibes from those in the oncology waiting room. Not to mention the fact that I won’t have blisters from heels this year. Comfort all the way at RWA!

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