Where the light enters

finding meaning in mortality

Tag: hair loss

Last dance with the red devil

Today was my fourth and final Adriamycin and Cytoxan chemo infusion.  Two weeks from now, I’ll begin twelve weeks of a different chemo drug called Taxol, but these first four treatments are supposedly the stronger of the two.

Adriamycin is probably the worst of these. Its nickname, the Red Devil, might give you a clue to its ill effects which can include nausea and vomiting, diarrhea, loss of appetite, darkening of skin or nails, mouth sores, weakness, fatigue, eye redness or puffy eyelids, and, of course, hair loss.  These are only the common side effects.  More serious side effects can evidently also occur.

The major side effect that I’ve experienced while dancing with the Red Devil is fatigue.  By this, I don’t mean the normal “I’m pooped and I’m going to go curl up on the sofa with a good book” kind of fatigue.  I mean the “I can no longer stand up or sit up or pay attention to anything and I have to go lie down now” kind of fatigue.  The kind of fatigue that makes you ask yourself why you’re wearing ankle weights.  Then you realize, of course, that you’re doing no such thing.

I’ve noticed the fatigue setting in sooner and lasting longer with each successive treatment.  I suppose this is what they meant when they said there would be a cumulative effect.  I finished today’s treatment just after lunch, and by late afternoon, I already needed a lie-down.

On a more positive note, today’s treatment was the last dance I’ll ever have with the Red Devil.  Even if my cancer recurs down the road, I can’t have Adriamycin again; there’s a limit to how much you can have in your lifetime, and I think I reached it this afternoon.

Not the Red Devil, but close enough. My mom circa 1980s.

Not the Red Devil, but close enough. My mom circa 1980s.

I do have twelve more chemo treatments to go; however, the Taxol is supposedly not as harsh for most people.  There may still be fatigue and hair loss, but I’ll no longer have to return the following day for a shot of Neulasta to boost my white blood count.  One possible side effect of Taxol that I’m not looking forward to is neuropathy.  This happens when there is damage to the nerve endings, normally in your toes and fingers, that causes numbness and tingling.  For most people, it’s a temporary condition, but for a few it can persist and become a permanent problem.  Some people with neuropathy end up not being able to button up their own shirts.

After my first round of Taxol, I’ll go to see my surgeon again.  She wants to evaluate the chemo’s effect on the tumor to see if it’s shrinking.  If it shrinks enough, (and by enough I mean an awful lot), I’ll be able to have a lumpectomy.  If not, I’ll have to have a mastectomy.  So far, it appears that the tumor is softening, but not necessarily getting any smaller.  My oncologist says that’s normal for where I am in the treatment process, so I suppose there’s still some hope that I won’t have to have a body part lopped off.

I’m not vain, and I’m not really worried about losing some part of my femininity, but I’d rather not start cutting body parts off.  How much more terrible it must be to lose an arm or a leg, or something more noticeable like a nose or an eye.  And yet I’m not comfortable with losing anything.

My friend, Joy, who went with me to today’s treatment, reminded me that as you age, you do lose things.  Maybe not entire body parts, but there is a definite sense of loss as you get older, when things no longer function as they used to, or you have to give up certain activities because they’re just too difficult to continue doing.

I understand her point.  Although I’m not entirely comfortable with the aging process either, I realize that it’s inevitable (if we’re lucky enough to make it that far).  I needed reading glasses for the first time a few years ago, and I still mourn this loss.  I’ve always welcomed change, but loss is a type of change that I’m evidently not well-equipped to deal with.

So the thought of my body drastically, irreparably changing in this way is a hard pill to swallow.  But if it’s a life-saving pill, I suppose I’ll have to learn to swallow it.

My oncologist told me today to stay positive and that’s what I’ll try to do.  Maybe the chemo will shrink the tumor significantly.  Maybe at the end of it all, dancing with the devil will have been worth the trouble.

Whatever happens, I say goodbye to him today, and thank him for his efforts to kill my cancer cells.  I wish him well with his next patient, and if my treatments prove to be a success, I promise to thank him every morning as I snap my underthings in place, getting ready for the day ahead.

10 (or 11) reasons to love being bald

It hasn’t quite been thirty days yet since I started chemo treatments, but I’ve already lost most of my hair.  I always imagined it would come out in great chunks like it does in the movies, but it just gradually thinned until it was mostly gone.  At that point, it looked like an old man’s comb-over, which really isn’t a good look for me.  I took a pair of scissors and cut it as short as I possibly could.

I’m as bald as a monkey’s butt, I announced to my boyfriend.  How bald is a monkey’s butt? he asked without taking his eyes off the computer screen.  I didn’t exactly know how to answer that without incurring a strange Google search history, so I went back to the bathroom and played around with my new look.

Anticipating this moment, I’d already bought a few things from a catalog for chemo patients, such as a turban that’s soft and super easy to put on.  I also have a little blue knit cap which can supposedly double as a sleep cap, and a few scarves that I will sooner or later have to figure out how to tie.  I imagine as cooler weather arrives, I’ll need snugglier hats.  It’s amazing how cold you can feel when you have no hair on your head to keep you insulated.

Being suddenly bald makes you ponder the importance our culture places on hair.  Going as far back as ancient times, there are myths surrounding its power.  One of the most famous of these is the story of Samson and Delilah.  Samson’s great strength was bound somehow in his locks of hair.  After Delilah shaved his head, his power was destroyed.  Modern-day Wiccans still attribute power to their hair, growing it long and ensuring that it never ends up in the hands of their enemies.

I don’t know if I’ve lost any power by losing my hair.  I’ve instead focused on trying to figure out how being bald could work in my favor.  After being nearly-bald for a few days now, I’ve come up with several possible benefits:

1. I’ll save a lot of money on shampoo and conditioner.  Conditioner used to disappear into my dry curly hair like Percy Fawcett into a Brazilian jungle.  But I don’t have to worry about that anymore!  I can just take a towel and shine it up like a bowling ball.

2.  The autumn wind won’t bother me this year.  Normally it whips my hair into my face and eyes, and is a constant nuisance.  I’ll be able to enjoy the fall even more than usual this go-round.

3.  I won’t have to carry a supply of scrunchies with me.  I’ll even be able to do some gardening without my hair swinging into the way.

4.  My hair won’t get caught in my boyfriend’s armpit.  I realize this is a weird one, but it happened with disturbing frequency whenever we were working side by side in the kitchen.

5.  I can finally wear the hippie hat I bought in the Haight-Ashbury district of San Francisco without worrying about contracting a vintage case of head lice.

6.  I have a great excuse to dust off some of the other hats in my hat collection and actually wear them.  Imagine that.

7.  I have a built-in costume for Halloween.  Especially if I decide to go as an alien.  Or a Conehead.

8.  My morning routine just got a lot shorter.  I won’t have to wait for my hair to dry before leaving the house, or nuke myself with a hair dryer.

9.  I can leave off taking Biotin supplements for a while.

And, last but not least…

10.  No more bad hair days!

I went into my local farmer’s market/green-grocer shop yesterday to pick up a few fresh fruits and veggies.  The shopkeeper didn’t recognize me, and asked if I’d been there before.  I said, Yes, but I had hair back then.  He quickly came out from behind the counter and told me how he was a cancer survivor who had been diagnosed with Hodgkin’s disease when he was sixteen.   Probably in his fifties now, he showed me a chemo scar on his wrist.  He insisted on giving me a free peach and then a hug.

This may be the greatest benefit of all.  I don’t mean getting free pieces of fruit, but the opportunity to hear the stories of those who have been in my shoes and survived, and are even thriving years later.  It gives me hope for myself, and makes me feel less alone in this surreal experience.  I had been in his shop many times before, and never knew what he had gone through.  And he endured it as a teenager; how terrifying that must have been.  Being bald had functioned like some kind of secret handshake, dissolving the usual barrier that exists between strangers.  It gave us a moment of real connection.

As I was leaving, he reached for my hand, and I gave it to him.  This would have seemed odd to me a month ago, but all I felt as he squeezed my hand was strength.  And power.  As though he were willing these traits to me in the middle of his small shop of jams and produce.  And I think he probably was.  His eyes were full of true compassion, and I felt a palpable transference of some kind.

I didn’t think too much about it until I got home and put away the groceries.  But the more I thought about it, the more I was convinced that, unlike Samson, I didn’t lose all that much when I lost my hair.  And  quite possibly, in its place, I acquired something pretty spectacular.

 

Wiggin’ Out

I feel like I just bought a new car.  That “I just paid a lot of money for something that I’m going to have to live with for a while, so I hope I made the right decision” kind of feeling.  Only this purchase doesn’t come with that new-car smell (or at least I hope it doesn’t).

I just picked out a wig.  Because in a very short period of time, my hair is going to start falling out in clumps (or so they assure me).  My boss told me to pick something fun, like maybe a pink mohawk.  I don’t think a mohawk is really my style, but I did have pink hair in the tenth grade, so I thought about it.  But in order to not look freakish at Thanksgiving, or on my new driver’s license when I renew it in a few months, I figured I need to have a hairpiece that kinda sorta maybe looks like it could be me in some alternate universe.

Jennifer Green at Hair with Care in Atlanta has helped me realize this goal.  Or I should say is helping me to realize this goal, since buying a wig is quite a process.  Choosing a wig is only the beginning of a long road of customization, fitting, cutting, styling, and possibly coloring that goes on.

Selecting a wig was a lot harder than I thought it would be.  Evidently fine, curly hair is not much in demand in the wig business.  I guess no one wants to pay good money to look like a limp poodle.  But fine, curly hair is what I have, so finding a good match has been difficult.  Add to that equation a small head and face, and you can see that Jennifer has her work cut out for her.

But it hasn’t deterred her.  After my first visit, she tracked down some good candidates.  So today I returned to her shop to try them on for size.  Some were definitely too poofy for my small face.  Some were too dark.  Some were too straight.  Some were too wiggy.  One even looked like a “giraffe” (Jennifer’s words).  But from these, we were able to narrow it down to one that with a bit of customization (the hair needs to be thinned, for starters), should suit me.

I never realized how much work goes into a wig.  Or how many different types there are.  There are synthetic wigs and wigs made from real human hair.  There are some wigs that are sensitive to hot temperatures, so you have to be careful to keep them away from heat; even opening a hot dishwasher while wearing it could fry it.

The best choice for me seemed to be a real human hair wig made with “European” hair.  It feels and looks much more natural than the synthetic ones I tried on the first visit.  The wigs made from human hair are of course more expensive.  Also blonde hair is more expensive than other colors, so my wig is coming with a hefty price tag.

Even though I only plan on wearing my wig on special occasions (and wearing turbans, scarves, and caps on most days), I thought it was worth it to spring for the real hair version.  I think if I had settled for the synthetic one, I would have had regrets.

So now that I’ve selected a wig, the next step is to tailor it to my head.  Jennifer is working on making the cap smaller, and removing some of the hair from it so that my small face isn’t completely overwhelmed.  Then we will likely cut it and style it to suit me even better.  And once my natural hair starts to “release,” as they say, the wig may need to be altered slightly again.

I know that nothing is going to be perfect; after all, my real head of hair isn’t perfect (I think I had a short stint of hair perfection in my twenties), so why should a fake head of hair be any different?  But hopefully it will represent me to the world with enough conviction until my own hair (for better or worse) can reclaim its natural place.