Congratulations! You’re done with treatment! You’re bald now, but soon you won’t be. You’ll have hair again! And you’ll have your life back!
Wait. Not so fast.
I know you won’t believe me when I say this, but finishing cancer treatment is one of the more challenging phases of treatment. I don’t mean to downplay the challenges of chemo, radiation, and surgery of course. But we cancer patients tend to build up the finish lines in our head. Once we get there, we think: all right! The job is done! We don’t acknowledge ‘finishing’ as another set of challenges. (It makes sense that we do this. In treatment, we have to live one day at a time, and so we do.)
But sometimes it’s best to look that ‘finish line’ myth right in the eye and challenge it.
I have hair again and it is one precious, magnificent inch long, but I am not myself again, not yet. I am two or three months out of treatment. Finished! But not. My port is gone but my brain has not returned. I function via Post-It notes, voice reminders, and a complicated, color-coded paper calendar system that tells me where to be and when. It is not fail safe. But it’s good enough for now.
I don’t bounce back from colds and minor injuries the way I used to, and this never fails to surprise me. Normally, a cold will annoy me. These days, I’m sucker-punched by any nancy-pants illness that wafts into my airspace.
My blood composition is out of whack, but it’s no cause for alarm. It’s “pretty good, considering,” according to my doctor. Everything I do and am is “pretty good, considering.” I’m getting through.
“Recovery is a marathon, not a sprint,” is a popular oncologist mantra. So I’ve finished one marathon, only to find myself at the beginning of another.
But I’ve run the recovery marathon before, and I know that it’s long, but it ends. You do get your brain back (mostly). You do get your energy back. Your body heals from treatment. Your fingernails and hair grow back. Your weight and appetite normalize.
The hard thing for bald girls is convincing everyone else you’re still in the fight. “It must feel so great to be done!” people enthuse. It is, I heartily agree. It’s great to be here. It is SO great to be here. Not everyone gets to be here. But we’re not running our victory lap now: we’re still in the race. It doesn’t end until it ends, and we don’t get to schedule the date.
This time, I don’t even get to guess. “Effects are cumulative,” is another popular oncologist mantra. I’ve spent the past few years building up quite the collection of poisons in my system. Nobody knows how that will affect my recovery time this time around, or if it will affect me at all.
Last time, I woke up one day and finally noticed what had been gradually building for months: health. Hair. Normality. (Or what passes for normal in me.) This time I’m watching more closely: I have to.
When you finish treatment, you have a “survivorship meeting” with your medical team. You get a folder full of materials and resources. I got a different folder this time. Last time, I was told: “Go forth and enjoy your cancer-free life!” This time they said: “Well. Here we are. We’ll wait and see if that worked.” Then the commandments were issued:
“You must see a doctor every three months. You must get checked every three months. You must get your bloodwork done every three months. If anything changes in your body – anything, anywhere – get it checked out right away.”
Absolutely, I promised.
“But don’t be a hypochondriac!”
Why on earth would I develop hypochondria? Just because you told me I have a 50/50 chance of surviving the next four years without recurrence, and symptoms of fatal recurrences can appear anywhere, at any time, in any organ system in my body?
What, me worry?
Which brings me to the Great Unknowable Question of recovery:
*What the hell am I going to do with my wigs?*
At some point, all bald girls decide they are no longer bald enough to bother with the encumbrance.
Both times I was bald, the outside temperature determined when I was no longer “bald enough.” When it was too hot to wear a wig, I just stopped.
When my doctor first wrote me a prescription for a “cranial prosthesis” (Latin for “wig”) for “alopecia” (Latin for ‘buh-bye eyebrows’), I made the appointment at the hospital boutique, and picked out a wig that matched my hair color and style. Insurance paid for it.
Then I went to the cheap wig shops and bought the fun wigs, the wigs I’d actually wear. Purple, pink, blue, green, Cher, Dolly Parton, Katy Perry, you name it. I amassed quite the collection, justifying the expense to my husband by pointing out my complete lack of hair cutting expenses.
Here’s a hair tip for bald girls: go to the wig shops downtown, not the medical wig shops. There’s more variety there, and they tend to be, cheaper, with more fun options. Also, Amazon has a great collection of ‘cosplay’ wigs. I don’t know what ‘cosplay’ is, but I think it concerns Japanese anime character role playing? I get the feeling I’d get it if I attended Comic Con.
I wore the ‘fun’ wigs most of the time. Granted, my job is to teach group fitness. It is hella fun to teach Zumba in a pink wig. Bodypump called for a sparkly red bob. All fitness classes could be taught in purple, especially during Ravens season. Here are some more head covering observations that may prove helpful:
Zumba and Headgear: An Education
1) Wigs reach tropical temperatures right after the warmup.
2) No need for wig tape: your microphone headset will keep the wig on.
3) BUT mic + big wig + small head = possible launch conditions for mic AND wig.
4) Dishwasher trumps washing machine for glitter glue removal. Use the top rack!
5) Scarves keep cool & make exotic turbans!
6) But tend to slip down over eyes. Blind dancing + elevated stage=YouTube sensation.
It was even fun to wear different wigs to school pickup. I’d match them to my outfits/mood. Max would walk right past me, not recognizing me. But he enjoyed the surprise of seeing who I’d be that day.
I thought that with my lack of wig gravitas, I would be holding Max aloft, above this adult-world ugliness of cancer. But at some point I realized I wasn’t actually holding him above adversity: I was teaching him how to deal with it. Bald girls may have to be bald for a little while, but they don’t have to be serious about it. Cancer is serious, but we don’t have to be. We, after all, are not cancer. Peeling that “property of cancer” sticker off ourselves every day is the real challenge. The nausea and baldness are minor league in comparison.
After my first sendoff three years ago, my peppy, optimistic “survivorship meeting,” I got rid of all eleven of my wigs. All of them. Gone. I knew there was the possibility I’d need them again. But I also knew my biggest recovery challenge would not be regaining my energy levels or my hair. The challenge was simply this: learning to live my life based on who I am and what I want, not what I fear.
I had to throw the fear out, or it would twist up my life like a vine, contorting and choking me. I couldn’t honestly say I had recovered from cancer until I did.
Although I entertained the ideas of 1) running the wigs over with my car and 2) setting them on fire, in the end, I donated them to drag queens at an AIDS fundraiser. I like to think my wigs are enjoying a fabulous second life on stage. Instead of serving as an attic-bound crutch to my fears for the future, they are doing what they did best: helping a drama queen be her very best-dressed drama queen.
Two years later, I was diagnosed again. Did I wish I had kept my wigs? Not for one second. Because when I was in recovery, only the present mattered. There was no looking back, and no looking forward. No wishing, no could-have-beens, no might-be’s. If one nice thing can be said of cancer, it (rather forcibly) adjusts your focus to the present. There’s only the here and now, and because of that, a lot of things that seemed like problems suddenly aren’t anymore. There was no room to entertain the what-ifs.
When I was diagnosed a second time, I owned zero wigs. Now, after my second round of treatment, I own 14 wigs. (A little indulgent, I’ll admit.) In a few short weeks, I will own zero wigs again.
My best hair tip for bald girls is this: when the time comes that you are no longer bald, burn the wig(s). (Or donate them!)
The finish line in the recovery marathon only becomes visible when we throw the fear away.
(In the meantime, you might as well have a little fun with your ‘summer haircut.’ When your hair reaches one inch long, try some product and experiment. Try a Halle Berry, or a Princess Diana, circa 1982.)
Bald Girls and Doctor Visits
*OK, fine. The Great Unknowable Question might not be “what do I do with my wigs?”
We all know the real question, and we all know the answer is beyond our reach.
This first year, Year 1 of Survivorship, is going to be the year we go to the doctor, frequently, and the doctor will find things, frequently. At this point our fear will be the highest, but the likelihood of It Being Cancer is actually probably lowest.
Why? Ask your hair. The chemo managed to seek and destroy every single hair cell on your body down to your nose hairs: do you think it missed something? It sure missed nothing in your stomach. That sh*t was a system-wide nuclear bomb. Only the cockroaches, and hopefully our senses of humor, survived the attack.
So here we are now, a few months out, and the doctors have found something on your [fill in the blank] and my [fill in the blank]. Are these just things that always existed in our bodies BC (before cancer), never before noticed because of their banality, or is this the lone survivor of the apocalypse? Yes, it’s possible. But it’s unlikely. Fast forward to five years from now, the magical Five Year Mark. You barely remember chemo. You’ve attached your beautiful, expensive wig to the end of your Swiffer and use it as a mop. You’re so used to going to the doctor and having things found. You’re blasé about it, too cool for school. Ironically, it’s by the time we’ve learned to manage our fear that our fear is (somewhat) (not totally) warranted.
Walking that line between vigilance and fear is our next great challenge. It would be so great if we could just forget about this monster, or hide from it, but the reality is we will have to face it every time we go to the doctor. Like a friend wisely told me: when they find nothing, we are happy. But when they find something, we are safe. I’ll go further: when they find something and it turns out to be nothing: we are both happy and safe. There are a few safe spots, a few logs to cling to in the crazy game of Frogger that is recovery. You fought cancer once: now you fight fear. I know you’re sick of fighting. I’m sick of fighting. But if we don’t, suffering wins.
And we bald girls are not sufferers. Our lives will not be bracketed by suffering. We can’t choose much, but we can choose that much.