And That’s The Way The Hair Falls Out…Er, The Cookie Crumbles.

For those of you who might remember the woes of the Franken-Foot, I’ve got another update.

For those of you who are unfamiliar, you can find the beginning of the story here. The gist is a rare, aggressive tumor grew in my foot. 4 inches long, 1.5 inches wide, 1.5 inches thick, and entangled in every tendon, vessel, and muscle in my foot. I’ve had 3 surgeries, spent many months on crutches, undergone MRIs and Xrays galore, and generally haven’t been able to walk properly since 2015.


Here’s the bad news, which is (thankfully) a little old, as it was from late 2017:

No surgery can be performed besides amputation.

That was a tough one to take. No denying I cried over it. I spent time thinking about how to modify my shower, my house. My life. Then I remembered, veterans live it. Others are born needing artificial limbs. If they can live it, I can live it. So I accepted that, moved on, watched my foot worsen.

By late last year, I could no longer grocery shop, make dinner and do dishes (one or the other, but not usually both). Carrying a laundry basket was sometimes more than I could handle. The pain in the my foot was so awful I spent a lot of time on pain pills and nerve blockers. I limped around Key West on my Christmas vacation, and was thankful for those pills and Mr. Alexander, who kindly drove me door to door. Also, thank you to Shipt, who delivered my groceries, and Lynne, a local Shipt shopper, who watched for my orders on Tuesdays, because she knew I couldn’t grocery shop.


The good news, from earlier this year:


A year after being on an ineffective oral chemo and trying to get other kinds approved by insurance (note, there are no drugs for this type of tumor, so I have to look for compatible cancer drugs), we finally requested infusion chemo. The regimen would have been once per week for 52 weeks.

Which, I reminded my wonderful nurse, was a year. She thought maybe 52 weeks would sound better, but we laughingly agreed, it really didn’t.

I mean, ugh. Not just ugh, but double ugh. 365 days ugh.

However, that insurance request kicked my case upstairs, and the oral chemo my doctor had wanted me to take last year was finally approved. Thank you, a thousand times, to my doctors, nurse, and insurance company!


The current good news:

I’m already seeing some results. I can grocery shop, after months and months of not being able to walk for more than 10 or 15 minutes at a time. No more nerve blockers, hardly any pain pills, and what I do take is low dose. Orthotics and physical therapy have worked wonders.

Of course, that is not conclusive. I need tests, labs, etc. etc. But I know what I know. I can walk. I even played catch with my son, because I could easily move to catch without running or jumping. Playing with my boy cannot be discounted, and neither can the joy it brought me!


Now for the…um…not so fun part.

My hair is falling out. Well, thinning, mostly. It doesn’t come out in chunks, but certainly in large portions. I can’t blow dry, brush it, pull it back—all of them result in more hair falling out. I have to wear it au natural, which is a lank, lazy, almost-curl. My eyebrows are sparse, and my eyelashes are sparser. Luckily, I can apply eyeliner and six coats of mascara, plus some mascara-type stuff for my eyebrows. I can hide those issues relatively easily.

But I can’t hide my scalp, or the bald spot in the back that is getting balder.

Why is it that hair seems so important? It’s just hair.

Long, short, curly, thin, thick, straight. Red, brown, gold-blond, red-blond, deep black. So many of us have thinning hair, or we lose it due to health issues, medication, hormone changes. Maybe it’s hereditary. Maybe it’s alopecia. Maybe it’s pattern baldness. Those of us with thick hair want it to be thinner, those of us with curly would give anything for straight hair.

It shouldn’t define us. We are more than our hair. More than our looks, for that matter.

Worse for my guilt, somehow, is that my thinning hair is not as difficult to live with as full hair loss. So many others loose it all. More, they face not only more difficult chemo, but the potential for death. I only have to think about amputation–others confront the worst of all fears.

Yet, here I am, spending entirely too much time each day checking to see if my hair is arranged over that spot in the back, where the cowlick reveals just how thin my hair now is. There’s a spot near my right temple, another on the left about halfway back, where you can see my scalp no matter how I arrange it.

I try to tell myself “It’s only hair. You are loved, you are special. You are strong and amazing. Your hair doesn’t change your soul.”

I don’t always listen.

Still, on Saturday, I’m cutting it off. Pixie cut.

It won’t solve the problem, and I may lose more yet, but the hope is a pixie will hide the spots where you can see my scalp.

I’m a little nervous, a little excited. The decision was the hard part, but now that I have the appointment, I just want it done. I will be able to stop agonizing about it. Move forward.

When it is over, I will come home to the most amazing husband who loves me. A child who will think I’m an awesome mom, even though I can’t play soccer anymore and my hair is shorter than his.

We are more than what we appear, my dears. Often, we are stronger, braver, and smarter than we think.

Sometimes it is hard to remember.

Take some time today, and remind yourself just how special you are.