Chapter 18: Ripping my hair out


And not because I want to.

It’s no question I’ve been through a lot in the last few months.

  • Esophagitis? Check.
  • Dramatic change in my diet to eat nothing that tastes good? Check.
  • Rapid weight loss of 10-15 pounds? Check.
  • My clothes falling off of me? Check.
  • Having to deal with people asking me why I’m so skinny and suggesting “maybe I should eat more”? Check.
  • Fever for 4 months? Check.
  • Sleepless nights and soaked sheets from night sweats? Check.
  • Waking up in the middle of the night to a panic attack? Check.
  • Not being able to do my job? Check.
  • Two surgeries? Check.
  • Countless scans? Check.
  • More blood draws than I care to recall? Check.
  • Two fainting episodes? Check.
  • Being hospitalized? Check.
  • Having to endure the stress leading up to a major surgery (that thankfully I didn’t have…yet)? Check.
  • Weekly visits to the oncologist (somewhere you never really want to have to go)? Check.
  • Being told I might have heart and/or kidney issues and needed to see a cardiologist ASAP? Check.
  • Throwing my back out and breaking or subluxing 2 ribs? Check.
  • Being in a wrestling match with insurance companies and pharmacies? Check.
  • Being told I have cancer? Check.
  • Beginning chemo and dealing with its crazy side effects? Check.

So all of that was a walk in the emotional park compared to this one other thing that cuts pretty deep.

Probably about a month and a half ago I noticed my hair started to really fall out. This was more than the usual little hairballs every female notices when she washes her hair. I’d noticed this before in times of stress and didn’t think much of it because, clearly, I was stressed whether it was in my conscious awareness or not.

It only got worse.

I did what anyone would do: avoided the issue. My hair—which I almost always wear down and straight—became a perpetual bun or ponytail. This wasn’t a big deal to me because this is how I lived for 10 years of my life as an athlete, not to mention it certainly saved time, energy, and electricity! I started to avoid washing my hair or touching it because every time I did, I would have to face the clumps of hair that came flying off my head.

And then it continued to worsen.

Now I have to stop here and say that I can’t help but feel small pangs of guilt and selfishness for even talking about this while there is still hair firmly attached to my head. With those unwanted trips to the oncology office, I see women who have lost ALL of their hair on a weekly basis. I haven’t lost it all.

“I see plenty of hair on your head there!” is a reminder that my husband and my mom recently said. Thank you, Captain Obvious.

Here’s the really annoying thing—I’m not losing my hair for a straightforward reason like “chemo makes your hair fall out.” That would be expected. My particular medication does not result in hair loss.

From what I’ve gathered-there are about a million reasons people can lose their hair. Both Drs. D’Amato and Grossman postulated it was because of all the stress my body has been under, and there may be more hair loss to come. Great. I’m taking a supplement to help with that, but as we all know—it’s going to be a slow growing process. The tough part is—we don’t know just how much I will lose or if and when the loss will stop and growth will restart.

It’s true what “they” say about cancer in women. Whether it is all there or not or whether it is because of chemo or not, the hair loss is arguably the hardest part. “They” are right. It’s hard. The tears fall off of my face just as fast as the hair falls off of my head. I think it’s mainly because it scares me and I don’t know when it is going to stop.

For those whose medical wheels are turning in your heads–yes, we’re also checking my thyroid. I’ve had a couple of other uncomfortable issues surface that indicate my thyroid may be a bit on the fritz, which I’m told may also be the effect of the chemo. I mentioned the weight loss—but now I’m starting to experience fairly uncomfortable weight gain in a very short period of time.

Now, let me just say that I have been thrilled to get back to a healthier weight. That was a real struggle and I’m proud of myself and my body for conquering that! But now I’m putting on more weight above and beyond that. We all know I do tend to overachieve, after all. All the weight I’m gaining is absolutely water weight and fat to the point that it is really uncomfortable. This is a side effect of the chemo and perhaps my thyroid. I feel huge and bloated all the time–even though everyone reassures me I don’t actually look that way. I’m monitoring and managing that with diet and exercise of course—but I can’t and won’t spend the entire day obsessing over either of those things. I’m going to have to be patient (there’s that word again) and let it all take its course.

So my hair is falling out and my face, chest, and tummy are puffy.

I try hard not to get caught up in appearances and materialism, but I’m not immune. Let’s face it, I am female in 21st century America, I don’t live under a rock, and my job requires me to look somewhat fashionable. I have my designer shoes and pay a lot of money to hang out with my awesome “hair team” (you know who you are!) and use nice hair products. I visit the nail salon and sometimes take extra time to make sure I look ok in selfies and instagram photos. I buy and wear expensive makeup because it is organic and good quality and doesn’t make my skin break out.

But there are the moments I really couldn’t care less what I look like. I’m also the athlete who will run around in Lulu (ok, fine, that’s a designer) and wear the same sweats for 3 days in a row on a long weekend because changing clothes and/or wearing “real clothes” is just so much work today. When I travel overseas, I take the least amount of clothing possible, almost never take make-up and hair straighteners/blowdryers, and rock the French braids, headbands, and messy buns with the best of ‘em. I’ll go makeup-less and wear a hat and hiking clothes out to dinner. Or my personal favorite-walk into the grocery store with a wet swimsuit under my clothes, stinking of chlorine, because I just got out of the pool and was too lazy to change.

So, appearances aren’t everything. But they are still important to me, especially when they have bearing on how I feel. I also like to use hair and/or outfits as a way to express my creative side. I guess I will just have to rely on clothes for now. Shopping, anyone?

I saw a great quote 2 days ago on Facebook:

“And if I asked you to name all of the things that you love, how long would it take for you to name yourself?”

This is such a good reminder to love yourself and your body, no matter how you look or feel or how much hair exits from your head. I’m so grateful to be relatively healthy otherwise, because it truly could be a lot worse. Beauty is definitely not just skin deep, and I take a lot of pride in feeling that way not only about myself but also about others as well.

I had a wonderful walk and chat with my friend Whitney this past weekend whose mom underwent cancer treatment. She totally understood and said it best “You just can’t leave your body when you’re so tired of dealing with it all.”

She’s right. Sometimes you just want to take a break from it all. That happens to all of us. We watch what we eat only to have the occasional “special meal” to celebrate something (or for no reason at all for that matter). We take care of our hair, our skin, our bodies. We exercise, we brush and floss, and we supplement. We take care of our minds and mental health. And among all of those things—we give ourselves a reprieve from time to time, taking a mini-vacation from taking care of ourselves. It’s ok and usually doesn’t catch up to us!

But that’s not an option here.

So, I write this not to complain or seek pity, but to portray just how real it can be to go through something that is really a large majority of the time out of my control. It’s not easy for a recovering control freak like me. Not to mention the side effects I’m experiencing are a result of the thing that is supposed to be curing me. Pick your battles, I suppose.

I also write this knowing that I am SO fortunate to have the type of cancer that I do, to have stumbled upon a specialist who is an expert in this rare type of cancer, to have such a wonderful village and medical team supporting me, and to be able to feel well enough to exercise, get out, and enjoy life. I have told everyone that Benedict has been a blessing in so many ways that it’s almost a joyful experience. We are all truly living on borrowed time.

But that doesn’t mean we don’t all have the things we struggle with. And today, for me, it’s a struggle to maintain my beloved blonde curly but-a lot-of-times-flat-ironed locks.

Big thanks to my friend Nikki who came and scooped me up and took me to lunch at one of my favorite places (Star Provisions and Jeni’s Ice Cream!) after my hair falling out meltdown today. Fried catfish sandwich, peanut butter chip and chocolate sundaes, fresh fall sunshine and good conversation sure did make me forget about all of those things. It’s the little things in life 🙂

In other news—I AM trying to do my best to feel like a normal adult human again. Trying to put one “fun” thing a day on my schedule to get me out of the house. I had a fabulous day date and dinner with my friend Johna to Atlanta Streets Alive in Atlanta’s Old Fourth Ward/Inman Park/Highland neighborhoods this past weekend. I’m continuing to gain some energy and enjoying some nice walks in the awesome late summer/early fall Georgia weather (it doesn’t get any better than this, folks!).

I went into the office to do some Pilates for the first time earlier this week. Holy weak muscles, Batman! That is going to be a nice journey to get back to normal strength. Yesterday I had a facial, today was lunch date with Nikki, tomorrow is a massage with the world’s best massage therapist, and then  Redcord session with my friend Maika.

Friday I will be shopping for ART SUPPLIES! Why? Because I’ve signed up for art classes! I’ll be taking sketch with ink and watercolor on Saturday and then I’ll be taking a 6-week modern calligraphy series beginning in early November. I. CANNOT. WAIT. Many of you know that I am a bit of a closet artist (see my instagram feed, hashtag #graphitisms). I find that drawing, coloring and hopefully/eventually painting are such wonderful ways to relieve stress and clear my crazy busy brain. It’s a Control-Alt-Delete button of sorts.

On that note, I’ve also enjoyed trying a new recipe almost every night. Daniel is really enjoying that too because he doesn’t have to cook and comes home to gourmet meals! I took a recipe from one of my favorite pizza places and made homemade pizza last night. It’s the corn pizza from the Cheese Board Collective in Berkeley, CA for anyone who has been there or tried it before (and if you haven’t—you should go there and try it). It came out great!

Medical leave has its perks—doing all the little things I’ve always wanted to do, but have never had time or energy to accomplish. Helps point out what’s really important. So, despite its down sides like slowly losing hair and feeling like my clothes don’t fit, life is good! And if all of this means that Benedict is getting squashed–then so be it! #takethatbenedict

It gets really good in Chapter 19…promise!