Where the light enters

finding meaning in mortality

Category: Life with Cancer

The post-surgery blues

My surgery was completed five days ago on Groundhog Day.  I never was sure what one does to celebrate Groundhog Day, so I guess having surgery is as good a celebration as any.  I just hope I don’t have to relive it day after day like Phil does in the movie.

Day Five post-surgery is bearable.  Days One and Two really weren’t.  The worst thing was not being able to find a comfortable position for sleeping.  The next worst things are the surgical drains that have become like new appendages.  Gross little appendages that dangle out of my side like useless rubbery limbs.

I have an appointment tomorrow with my surgeon, and I’m hoping the drains will be removed.  Until then, they’re tucked away in secret pockets inside my new camisole’s Velcro depths.  Not exactly haute couture, but it definitely serves its purpose.

I thought I would be sad losing a body part, but the main thing that I feel now seems to be guilt.  I keep thinking that if I had only been more vigilant, or gone to see the doctor sooner, or eaten more vegetables, or taken more vitamins.  Who knows?  I’ve scrutinized every possible mistake and misstep for the past decade, trying to figure out where I went wrong.  This is, I know, a fruitless exercise, as I think it’s very rare that anyone knows for certain where his cancer came from.  How could you know?  We bathe ourselves (sometimes literally) in carcinogens, eating, drinking, and breathing them.  How could we pick out a single culprit?  Quite likely it wasn’t one thing that caused cancer to form, just as it’s not likely that one act of mine would have prevented it.  There are way too many variables in something like cancer to pin it down so tidily.

But nonetheless I feel guilty for not knowing that this was happening to me, for not paying attention to every excruciating detail of my physiology.  Mea culpa .  And I’m not even Catholic.  I’ve made so many mistakes in my life; it only seems reasonable that this is another one.

I used to have a dream that I had forgotten to do something and, as a result of my forgetfulness, I was doomed.  Did my unconscious mind know that something malevolent was growing inside me?  Maybe this is going too far with dream analysis, but I’ve not had the dream lately.  Maybe my subconscious is saying, Finally!  You realized that creepy thing was colonizing your body and you took action. ‘Bout time.  Or something like that.

I guess I should just be happy that the tumor is gone, although I probably shouldn’t count my chickens until I’ve seen the doctor tomorrow, to learn the results of the pathology report.  It’s possible that I could need more surgery if the tumor margins aren’t clear.

This may sound morbid, but I wish I could save my tumor, maybe put it in a jar of formaldehyde (a carcinogen, so my tumor would likely feel at home), and look at it.  If I could envision it outside of my body, a separated thing from the rest of me, maybe I could be comfortable with the idea of it being gone.  As it is, I’ve never seen it.  I have no material proof of its existence or non-existence.  I don’t think my doctors are concocting an elaborate scam to bilk my insurance company out of great gobs of money (or do I?), but I had no symptoms of being sick, no indication of anything being wrong, only a feeling of firmness in one breast.  If I could only see the tumor, be able to point to it and say, Foiled again, Snidely Whiplash!,  (or maybe something that doesn’t make me sound quite so old), I think I would sleep better at night.

But that’s impossible.  They’ve already cut the little bugger up and analyzed his very essence.  I guess I’ll have to be satisfied with whatever news comes of this dissection.  I’m hopeful that it will be a bit of good news finally.

Until then, I have to suffer through the post-surgery blues.  Guess I’d better get my harmonica out.  It might be a long night.

Listening to the universe

It seems that most people don’t keep in touch with their exes once they divorce or break up.  I guess I’m the exception; I stayed friends with both of my ex-husbands.  People may find this strange, but I happened to marry two really great guys.  My second husband and I were married for twelve years.  That’s actually pretty good considering the fact that we met five days before our wedding.

It’s a strange story that I don’t usually tell people, but it’s something that I find myself thinking about lately.  It all started in December 1995, when I was feeling pretty low.  I had been married to my high school sweetheart for three years after dating for seven, but somehow things had gone horribly wrong.  I was in school working on my bachelor’s degree, but otherwise, my life didn’t have much going for it.  I was seriously unhappy.

I had never been a terribly religious person.  My mother went to the local Methodist church every Sunday, but I think it was mainly for outward appearances.  She wore a completely different face in public than she did at home.  When I was younger, I went with her to church.  She had a terrible temper and was very apt to curse (mainly at me) for the entire drive to church, being careful to put on a “pious” smile when we arrived.  As soon as we pulled out of the parking lot after the service, her true personality returned, and so did the cursing.  As soon as I was old enough to understand what it means to be a hypocrite, I lost any interest I had ever had in church-going.

So when my life seemed to become hopeless, it was quite odd for me to speak to God.  But that’s what I did one night; I sat up in bed before going to sleep and said, “God, if you really exist, please tell me what to do to be happy.  I promise to do what you tell me if you just show me what that is.”  That night I had a dream.  I dreamed that I was getting married, although I couldn’t see the groom in the dream.  All I knew was that my friend, Nasser, had arranged the marriage.  And I was happy.  Very.  Very.  Happy.

Even when I woke the next morning, I was happy.  I hummed cheerful tunes all day, skipped to the mailbox at lunch, and drove to classes at night still feeling upbeat.  When I walked through the courtyard at school, I saw Nasser sitting on a bench, studying and eating vending machine cheese crackers.  I sat down beside him, stealing a cracker and popping it into my mouth before he could say anything.  I was very tempted to tell him about the dream, but restrained myself.  If it was real, it would happen without my forcing it.

After a few minutes of small talk about classes and exams, Nasser said, I have a nephew back home; I think you would make a great match for him.

I couldn’t believe this was actually happening.  If I hadn’t had the dream, I would never have listened to Nasser’s spiel.  But, after all, I had promised God that I would do whatever he told me, right?  So I listened.  And found myself writing to this nephew the very next day.

We wrote to one another for maybe a month.  The picture that he sent me of himself was disappointing when I first saw it.  He wasn’t smiling, and his hands were awkwardly clasped in front of the hideous shirt he was wearing.  His hair was unkempt and I thought that he kind of looked like a Middle Eastern Fred Flintstone.  And to top it off, he was standing in front of an obviously-fake backdrop of palm trees.  But I believed that the dream meant something, so I propped the photo up on my nightstand and looked at it first thing each morning and last thing each night.  It wasn’t long before the picture had grown on me.  I started noticing that the hands looked strong, and the eyes looked honest and intelligent.  And kind of sad.  At the end of our month-long letter writing, I was on a plane to Tel Aviv.

I can’t say that the month I spent in Israel’s West Bank was easy.  He didn’t speak an awful lot of English, and I knew exactly two words of Arabic (neither of which I could pronounce correctly).  Our wedding took place in a sweet shop, where I ate entirely too much kanafeh (which I hope to never see again).  A celebration took place at his parents’ house that night; women danced around me all night as I sat uncomfortably in the tackiest pink satin dress that his sisters could find.  The men danced outside; by the sound of it, they were having a blast, but I wasn’t allowed to go see.

By the end of the month, I was convinced that the dream had been prophetic.  God existed.  And he evidently wanted me to be happy.  Because I certainly was.

And we were happy for most of the twelve years we were married.  Things weren’t always great; mixing cultures and languages is hard.  But we hung in there until one strange day in 2008.

It seems petty (and quite possibly bat-shit crazy) to say that I divorced my husband because his scent changed.  But that’s pretty much what happened.  One day I noticed that he smelled different.  His normal scent had been replaced by a strange dark musty odor.  And with this change, the spell that he had over me was broken.  I suddenly could see him objectively, and for better or worse, felt that we were no longer compatible.  All the grievances I had with him over the years were now deal-breakers.

So we got a divorce, but we stayed friends.  I wondered about the dream and the promise I made, and what it meant that things had ended this way.  I did what God told me, and still ended up unhappy.  I was a cosmic failure.

He called me one day five years after our divorce and told me that he had been diagnosed with stage four stomach cancer.  It was early January, and he had only found out in October.  I thought, “He’s young (only 41) and otherwise healthy.  Maybe he can beat this.”  He said the doctors thought the cancer had begun five years earlier.  Around the time we divorced.  I started thinking about that, wondering if having cancer changes your body scent.  Evidently it does to a dog’s nose, but could humans possibly detect a difference as well?  When I told my brother this theory, he said, So you’re saying that you have the ability to smell as well as dogs?  As far as superpowers go, that’s pretty lame.

I went to see him shortly after the phone call.  He was very thin; I didn’t know if it was from the cancer or from the chemo he was taking.  They also had him on an experimental drug which he seemed pretty hopeful about.

On January 17, 2014, I had a dream (yes, another dream).  My ex was standing in front of me, looking young and healthy.  He said, I’m going back home.  I think I replied with something like, Oh, that’s great. I guess you’ll be getting treatment there.  I don’t remember the rest of the dream, or maybe that’s all there was.  Three days later, my phone rang after ten at night.  The caller ID said it was his uncle.  I didn’t want to answer the phone, but I knew I had to.  The uncle’s voice said, We lost Fareed.

I went to the funeral home the next day, but I felt completely out of place.  His mother, who had always been so friendly to me, pretty much ignored me.  Two days later, they flew his body back to the West Bank for burial.

Yesterday I found myself thinking about him without knowing why.  Then I realized what the date was.  For a while after he died, I talked to him.  Yesterday I talked to him again.  I apologized for leaving after his scent changed; whatever happened to “for better or for worse” (although in my own defense, that’s not a part of the Muslim wedding service)?

Fareed was a very nurturing person.  When my mother was dying, he would visit her every night.  Many nights he would simply stand by her bed and hold her hand; my mother might have been a less-than-ideal patient all day long, but the moment he appeared, she quieted down and a peaceful look would come over her face.  He was the only one who had this effect on her.  Lately, I’ve wished that he could be here for me when I haven’t felt well, even though I realize I was too selfish to be there for him when he was sick.

I still haven’t figured out why the universe hooked us up only to split us apart twelve years later.  Did we do something wrong?  Did God decide I didn’t deserve to be happy, after all?  With my own recent diagnosis, I think there might be some truth to the latter.

Some Hindus believe that everything in your life contains a lesson that you need to learn.  If you don’t learn the lesson in one life, you will be presented with it again in the next.  And the next.  And so on until you finally learn whatever it is the universe is trying to teach you.  At this point, I obviously have no idea what the universe is trying to tell me.  Evidently I’m not a good listener as far as cosmic conversations go.

But I honestly think I’m trying.  Several people close to me have died of cancer: my mother of breast cancer, my father of chronic leukemia, my grandmother of colon cancer, and my ex of stomach cancer.  Now I too have cancer.  There must be a lesson here somewhere.  Maybe I’ll be able to learn it in this lifetime.  Going through this over and over again in many different lives doesn’t seem like a good option.  So speak to me, universe.  Sooner or later, I hope to figure out what you’re saying.

A disappointing photo, but one that grew on me.

 

A case of cold feet (and hands): Taxol treatment number two

Today was my second Taxol chemo treatment.  I was apprehensive about it because of the side-effects I experienced at the first treatment when the Benadryl they gave me to reduce the risk of a reaction caused me to be absolutely loopy (and not in a good way).  It also caused my feet to have horrible creepy, tingly feelings, like electricity shooting through them.  It was seriously not a pleasant way to spend an afternoon.

But today’s treatment wasn’t nearly as bad.  Since I didn’t have a reaction to my first Taxol infusion, they (“they” being a lovely nurse named Diane who always has a smile on her face) gave me only half the dosage of Benadryl this time.  It still made me somewhat drowsy and strange-feeling (and as my brother would say, I am strange), but I felt as though I could still function.   And I didn’t fall asleep.  I also (thank heavens!) didn’t notice much creepiness going on in my feet.  Yea!  A small victory, but important considering I have ten more of these treatments ahead of me.

The after-effects of the Taxol drug itself seem to be much less severe than those of the Adriamycin/Cytoxan regimen that I was initially on.  The only real side effect I noticed last week was that my nail beds were sore.  Evidently Taxol can do a number on your nails and digits, causing the nails to split or fall off, and causing numbness and tingling in your fingers and toes.

I did a little research online and found a product designed to counter these effects in a chemo patient’s hands and feet.  It’s called Elasto-Gel and it’s available in both hypothermia mitts and slippers that you wear during your treatment and for 15 minutes before and after.  These mitts and slippers are frozen beforehand and keep your extremities cold so that they (in theory, anyway) don’t absorb as much of the chemo drug you’re receiving.

These mitts and slippers aren’t cheap, but my boyfriend convinced me that I should get them, so he ordered me two of each from Amazon.  I needed two of each because they only stay cold for 45 minutes, and then you swap them out for a fresh pair from your cooler.  So at roughly $100 apiece, we spent $400 on this experiment.  But, as my boyfriend says, it’s money well spent if it works.

They arrived yesterday, just in time to pop them in the freezer for a good overnight cooling.  This morning, we packed them in my new cooler and placed ice around them before heading off to the hospital where my infusion center is.

So yes, I had a cooler on wheels today to go along with all my other bags, so I really looked like I was heading to the beach instead of a medical appointment.  Or maybe I looked like I was wheeling organs through the hospital.

At the appointment, my friend Joy helped me get into my new apparatus.  First you place a liner on your hand or foot; these are thin papery liners that are supposed to protect your skin from direct contact with the frozen parts.  The foot liners look like those blue surgical booties that doctors slip over their shoes.  The mitt liners are white paper “oven mitts.”  Both are large, and since my feet are small (5 1/2), the liners are huge on me.  But then the Elasto-Gel slipper goes on, and it doesn’t matter that the liner is huge.  The slippers are adjustable and once tightened around the back of my foot, they fit pretty snug.  The mitts are also adjustable, but don’t feel as snug on my hands as the slippers do on my feet.  They kinda looked like boxing gloves; I was ready to step into the ring.

They weren’t as uncomfortable as you would imagine.  I thought having frozen hands and feet might be unbearable, but the sensation of cold was different than I’ve experienced before.  Normally when my hands and feet are cold, my whole body feels cold, and I’m miserable until I can get them warmed up.  But I didn’t notice much discomfort today.  I did have a heated throw over the rest of my body, so I’m sure that helped.  But even though I could feel the cold on my hands and feet, it didn’t make me feel cold.  I was thankful.  Being cold is one of the things I really dislike.

The only thing I don’t like about wearing the mitts and slippers during treatment is that they hinder you from doing other things such as eating, drinking, and reading.  I also didn’t feel comfortable going to the restroom while wearing them, so I desperately needed to pee when it was all over.

But if they work, I think these inconveniences can be withstood for another ten weeks.  I think I can deny myself snacking for an hour or so a week.  And as long as I drink before and after, I think I’ll be getting enough liquids.  I guess I won’t know if they work for at least a few days.  I’m hoping that they’ll at least help keep the side effects to a minimum.

Whether or not the mitts and slippers work, it does appear that my chemo treatments are working.  I saw my surgeon Monday at Georgia Breast Care.  She did an ultrasound of my tumor, and seems to think that it’s breaking apart and dying off.  She said she doesn’t see a “mass” as she once could; it’s quite possible that all that remains is scar tissue and dead tumor.  Of course, an MRI will be needed to confirm this at the end of my treatments in ten weeks.  If this is shown to be the case on the MRI, I’ll likely be a candidate for lumpectomy.  This is the best news I’ve had in quite a while.

To celebrate, I made one of our favorite recipes for dinner tonight: Onion Gravy Cubed Steak and mashed potatoes. This is one of my go-to comfort dishes for fall and winter. It takes an hour and a half to cook in the oven, but as long as you’re not pressed for time, it’s simple and rewarding. As far as I’m concerned, this is the perfect warm-me-up dinner after a day of cold hands and feet, and a much-needed moment of celebration.

Fighting cancer with the yew tree

Today I received my first infusion of the chemotherapy drug, Taxol.  Taxol is a plant alkaloid made from the bark of the Pacific yew tree or Taxus brevifolia.  I find this interesting in light of the magical associations that Druids had for the yew trees that grew in their region (most likely the English yew, or Taxus baccata).  The Druids worshiped the yew, and if this treatment cures me, I may start doing the same.

In order to get the Taxol infusion, you first get an infusion of Benadryl.  This helps prevent a severe allergic reaction to the chemo.  It’s evidently quite a large dose because its side-effects for me were excruciating.  First I felt very woozy, my head bobbling from side to side.  My speech sounded as though it were coming from somewhere far away, my thoughts were all scattered.  I tried to take a sip of hot chocolate from my styrofoam cup, but couldn’t.  But then it got worse.  My legs started crawling with what I can only describe as electrical “jitters.”  It was like “restless leg syndrome” on steroids.  I squirmed and twisted and whined like a spoiled Pomeranian.  I found that if I flexed my leg muscles, it helped.  But how long can you sit with your muscles flexed?  Sooner or later I had to relax, and immediately the feeling was back.  Thankfully, the woozy feeling eventually overwhelmed my senses and I was out.  I slept for over an hour, and when I awakened, the jittery legs had improved enough for me to relax for the rest of the treatment, although I still felt too groggy to read or carry on a decent conversation with Joy, my friend who accompanied me today.

The nurse said that as long as I didn’t have a reaction to the Taxol, she could decrease the amount of Benadryl for my next treatment.  Thank heavens.  If I had this to look forward to for another eleven weeks, I think I might have to consider learning to live with a tumor in my body.

I came home from the treatment center and went straight to bed.  After a nice long nap, I was able to get up and be fairly functional again, puttering around the kitchen and figuring out what to make for dinner.

I haven’t noticed any side-effects from the Taxol yet.  The nurse said that most likely in two days, I will feel flu-like symptoms, such as pain in the joints and muscles.  Also, there can be neuropathy (numbness and tingling of the hands and feet), nausea and vomiting, diarrhea, mouth sores, hair loss, and low blood counts.  All very similar to the possible side-effects of the two chemo drugs that I just finished, except for the addition of the aches and pains.

The main side effect that concerns me is neuropathy.  I got a taste of that from my last treatment.  I’ve already lost most of my hair, but I do still have my eyelashes and eyebrows, so I suppose it could get worse.  My blood counts have all rebounded in time for my next treatment except for my hemoglobin levels.

Hemoglobin is a protein in red blood cells that carries oxygen through the body.  Because of my low levels, I’m anemic, but not iron-deficient anemic, so taking supplements doesn’t help.  There’s really nothing to do to improve it without a blood transfusion, and my doctor says my levels haven’t dropped that far yet.  But they are low enough to explain my racing, pounding heart and palpitations last week.  She told me to not perform any strenuous activities until my hemoglobin levels go back up.  And since I have another eleven weeks of treatment, my levels may not rebound for another three months or so.  Great.

When my mother was undergoing chemo, she had to have multiple blood transfusions.  She had a reaction to one of them, causing tachycardia, and had to be admitted to the hospital to slow her heart rate down.  Needless to say, I’m not excited at the prospect of getting an infusion.

Something I am excited about is a class that I took last Saturday called Film is for Everybody Workshop: Screenwriting 101 and Filmmaking Basics.  Taught by Najaa Young, President and CEO of NaRa Films and a professor of digital filmmaking, this class was a fun introduction to screenwriting for me.  I’ve always thought it would be a great project to take a book that I really enjoyed and write the screenplay for it.  Even if it was only a creative exercise that I did just for writing practice, I think it would be worthwhile.

Another thing that I’m excited about is the discovery of YogaAnytime.com.  For a monthly fee, I can take unlimited yoga classes online.  They have many teachers and yoga traditions to choose from.  They also have classes in meditation, the Bhagavad-Gita, and Ayurveda.  I’m hooked.  For the moment, I’ll try to take classes that aren’t too strenuous.  At least until my hemoglobin is back to normal.

So two things to be excited about this week.   That might be a record, at least for these recent weeks.  Now if I could only be certain that these chemo treatments were working…. That would be really exciting.

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.

 

Stalking the wild caribou: post-chemo eating adventures

I’ve been doing a lot of reading about nutrition since being diagnosed with breast cancer.  Especially nutrition that is supposedly good for cancer patients or those undergoing chemo.  It’s not a topic that my oncologist has made much fuss over.  Evidently oncologists are trained to rely on chemotherapy as a sole means of treatment, and give little credence to complementary therapies like nutrition.

There are nutritionists who work with cancer patients and I have consulted with a few of those.  It was interesting to get conflicting information in some cases from the two ladies I spoke to.  For example, one seemed to think that consuming soy had positive aspects for a breast cancer patient, while the other one warned against any consumption of soy in a very dire tone.  As in an if-you-eat-soy-you-will-die kind of tone.

They were, however, in agreement with many of their recommendations.  Getting a good, lean source of protein was high on both nutritionists’ lists.  Both recognized that organic hormone-free chicken and small amounts of grass-fed beef were good sources of protein.  Both cautioned against cow’s dairy for any hormone-driven cancer, instead suggesting goat’s or sheep’s milk dairy.  Fish was suggested by both as a great source of the “good” omega fatty acids.  Cruciferous vegetables rank high on their lists, as well as alliums (garlic and onions).  Fruit in moderation, especially berries, were touted by both as being beneficial.

The things to stay away from were similar for both: sugar is evidently the big bad, followed by all the things that become sugar in our bodies as soon as we eat them (potatoes, pasta, white rice, etc.).   Giving up dairy was the hardest change for me.  I have always consumed a ton of it: milk, cheese, yogurt, cream, butter… If it was pumped out of a cow, I ate it.  My German ancestry evidently gave me fabulous lactose-digesting genes, which I was determined to make good use of.  Which was probably not a smart thing in retrospect, considering that my cancer is strongly estrogen-positive, and today’s cow’s milk dairy is high in hormones.  Even organic milk is high in hormones because milk cows are kept constantly pregnant so they’re always lactating.  I had never thought about this before my diagnosis.  I always thought I was being safe by only buying organic milk, but evidently that’s not enough.

Fine, I think.  I can give up dairy and sugar.  I’ve always had a fairly healthy diet (except for those nights where nothing will satisfy except a carton of Ben & Jerry’s Half Baked FroYo).  For the most part, I’ve always eaten minimal amounts of meat and a decent portion of healthy veggies, including cabbage, brussels sprouts, beets, and lots of garlic and onions.  I should be good-to-go for this cancer-fighting diet, right?

Only once you start chemo, everything changes, and I mean everything.  Your taste buds, for one.  Suddenly all the foods I’ve liked and disliked in my lifetime are shuffled like a deck of cards, with things I would never have considered eating ending up as my cravings, and things I’ve always craved ending up as foods I couldn’t possibly consider eating now.

For example, I’ve always had a massive sweet tooth.  But at the moment, to even think about something sweet turns my stomach.  I seem to chronically have a strange taste in my mouth, sort of like the too-sweet aftertaste of a diet soda.  My boyfriend made a pumpkin pie last night; I thought I’ll try a piece; it’ll probably be fine once I start eating it.  It wasn’t.  The pie tasted like a Listerine-drenched slab of congealed bean paste.  Seriously.

Oddly enough, though, I can still enjoy fruit.  The sugar in fruit doesn’t seem to affect me the same way that the taste of processed sugar does.  So I can still eat the berries that are recommended.  And my new fruit obsession: pineapple.  I never really liked pineapple before, but now I crave that taste as well.  I read in The Cancer-Fighting Kitchen by Rebecca Katz that Australian researchers found that an enzyme in pineapple can block cancer-related proteins and prompt immune cells to attack cancer cells.  Interesting.  Does my body somehow know this, or is the new craving a coincidence?  I’ve also read that pineapple is a great cleanser of toxicity in our bodies, so maybe that’s why I suddenly crave it:  Maybe my body’s trying to hose out the chemo poisons.

The other thing that I’m craving is meat.  I’ve never been a big meat eater, but suddenly I’m starving for barbecue, burgers, steak.  Anything red-blooded.  If a caribou (or quite possibly the neighbor’s dog) were to suddenly stroll across my back yard, I would be out there in a jiffy with a baseball bat, stalking it like a Cro-Magnon in the middle of a hard winter.  Even my bony poodle has started glancing at me nervously these past few days.

I told my oncologist of my strange meat craving and aversion to sugar.  She seemed to think it was a good thing.  Most people going through chemo crave sugar, she said.  At least if you’re craving meat, you’re getting protein.

I guess she has a good point.  I’m not sure how much protein there is in the neighbor’s bluetick coonhound, but I think I’m getting plenty of protein from the other meats I’ve been stalking.  I know I should probably try to make sure they’re more on the lean-and-healthy side, but it’s hard to mollify the beast’s appetite once it has awakened.  Maybe this is how it feels to have a tape worm.  Or an alien growing inside of you. Or just chemo-addled taste buds. Probably the latter.

Pretty woman to the rescue!

Yesterday at lunch I returned to Hair with Care to have the final (at least for now) touches put on my customized wig.  I can’t begin to say what a difference there is between the customized version and the original.  Jennifer has done such an amazing job with it!  The first time I tried the wig on, it looked like an animal of some kind was attacking my head.  But now it looks uncannily close to my real hair (which might still look like an animal attacking my head, but at least it’s an animal that I’m accustomed to).

Jennifer makes a few little trims here and there, shaping it to my face perfectly.   We discuss putting bangs in it (I cut myself bangs several months ago in a fit of boredom), but I decide to live with it for a while before going down that road.  Because face it, it’s not going to grow back; if you don’t like it after you cut it, you’re stuck with it.  Besides, it’s cute just the way it is, and Jennifer has even trained the hair to sit off of my face the way I like it.

She shows me how to care for it, how to spritz it with water at night, and place it on a foam mannequin head with t-pins to hold it and shape it the way I want it.   She shows me how to put the headband on which helps hold the wig in place.  How to put the wig on, and center the ear tabs just over each ear to ensure that it’s sitting correctly on my head.  How to brush it and tease the little “baby hairs” at the forehead.

It may need further tweaks after my hair falls out, but for now, she’s perfect.  And yes, it is a she.  Jennifer says everyone names her wig; what am I going to name mine?  What’s the model name of the wig?, I ask.  She says, It’s called Pretty Woman.  So I guess I’ll call her Julia, I say.  Jennifer laughs, puts Julia pinned to her mannequin head in a tote bag for me with all her accessories, and I head back to work.

Even though it’s September, it’s still steaming hot in Atlanta, so I’m scared to leave her in the car.  She’s real hair, so I don’t think it’ll hurt her, but I feel better taking her with me.  Julia’s foam head has a super-long neck, so her scalp is sticking up over the top of the bag a bit.  As I get on the elevator, I realize that it quite possibly looks as though I’m carrying a severed head in my tote bag.  I don’t worry too much about it; stranger things have happened at some of my workplaces.

Julia’s quite a hit back in the office.  Everyone wants to see her and touch her.  Our CFO is fascinated by her.  He keeps saying, It feels like real hair.  I keep saying, It is real hair.   Another friend plays with her for a while before putting her back in the bag, saying, Well, I’ll get out of your hair now.  We both crack up.

Going home that night, I put Julia in the passenger seat.  I mean, where else is she supposed to ride?  So Julia rides shotgun, and we head home.  At one point, I have to hit the brakes a little hard, and Julia plunges head-first (or maybe scalp-first since she’s only a head?) into the floorboard.  I scream, Julia!! Noooooo!!  My three thousand dollar wig is upside-down in my cheeto-dust infested floorboard.  It’s a frightening moment.

When we pull in the driveway twenty minutes later, I’m finally able to rescue her from the grunge pit.  She’s fine, not a single cheeto in her hair.  Julia is one tough cookie.  I take her inside and give her a home on my dresser.  There she sits, looking lovely, ready to spring into action if I should need her.  And I will most likely need her soon.  Today was chemo infusion number two.  Normally this is when patients start to notice drastic hair loss.

To get myself ready for this, I took a pair of scissors last night and whittled my hair down to a short ‘do.  I’m thinking “baby steps.”  Let’s just get used to it being much shorter before I have to get used to being completely bald.  I haven’t had short hair since the 8th grade, so this is quite a change.  But I find it fun, and sitting in the sauna this afternoon without hair stuck to my neck was quite nice.  I even got a few compliments on it today, so I guess it can’t be that bad.  And if the thought of whacking your hair off with scissors makes you shudder, don’t worry; curly hair is very forgiving.  If my hair had been straight, I would have left the whacking to a professional (And of course, by that I don’t mean the godfather, but a hair stylist).

I imagine, at most, I’ll have the whack-job for a week.  Then Julia will get to step in and do what she was meant to do in life, her raison d’être, i.e. giving me a semblance of normality in a time that’s suffused with the abnormal.   We’ll hit the town and see if anyone notices that she’s just along for the ride.  I’m not sure if I can take her out without humming that song to myself though.  I don’t believe you, you’re not the truth/ No one could look as good as you.  Hopefully, no one will guess that she’s not “the truth.”  But I have to say, the second line sums her up perfectly.

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.

My introduction to mortality

It’s amazing how a serious health diagnosis changes your life.  I don’t want to use an overly-simplified phrase like “It was a blessing in disguise” because I’m not there yet.  And I really don’t think it’s that simple.  I hear a lot of people throwing this phrase around, but it’s too new yet for me to assume that there will be a shiny silver lining in the middle of all the loss.  It’s too soon to try to imagine the ultimate change this will have on my life.  All I know at this point is that I would give good money to make it go away, to be able to wake tomorrow morning and find that it was all a horrible nightmare.

Being diagnosed with cancer at the age of forty-six seems surreal; maybe it would seem surreal at any age, but I never thought I would be face to face with my mortality in my mid-forties.  I figured I had at least another twenty years before I would have to confront this morbid reality.  But here I am contemplating things very dark and occasionally soul-crushing.

With these sorts of thoughts crowding into your skull, it’s hard to not feel that something has changed in how you view the world.  Already I can tell that my priorities are different.  Things that were once very important have been tossed to the side like clothes that no longer fit.  It doesn’t seem to matter anymore that I’ve lost a pound and a half or that the new Brahmin line of purses has a gorgeous tortoise pattern available.

I’ve been very emotional since my diagnosis; everything I’ve read tells me that this is normal, but it doesn’t feel normal to cry in the supermarket because the dark red globes of the beets are so beautiful.  Navigating Pinterest these days is like walking through a field strewn with land mines; there are far too many smiling dog faces or cute kittens doing cute things.  And I’m not normally an emotional person.  But these days the simplest, most mundane things are likely the things that will smear my face with mascara.

I find not only the possibility of death to be a constant companion, but the inevitability of change is also forever in my thoughts.  My treatment regimen will consist of chemotherapy, surgery, radiation, and hormone therapy, all of which will bring their own changes to the party.  Some of these changes will likely be temporary, but some will also be permanent.  Trying to envision how I will be at the end of it all seems as iffy as picking the right lotto numbers.

WaterLily2

Years ago, a friend of mine introduced me to a poem of Rumi’s called “Childhood Friends.”  In the poem, a childhood friend brings Joseph a mirror as a gift and holds it up to him saying, I’ve brought you a mirror.  Look at yourself, and remember me…../Your defects are the ways that glory gets manifested./Whoever sees clearly what’s diseased in himself/begins to gallop on the way./…Don’t turn your head.  Keep looking/at the bandaged place.  That’s where/the light enters you.

Rumi was of course addressing the spiritual wounds, the defects in a man’s soul that he should be aware of and confront, but I think that if one can read it as including both physical and spiritual wounds, it’s an even more powerful message.  Instead of turning away from our wounds, we can confront them and accept them as part of us, for better or worse.  The Venus de Milo is no less beautiful because Aphrodite is missing her arms. There’s something lovely about the scars of an antique; many furniture makers work hard to get a “distressed” look for a new piece of furniture.  The scars and the blemishes show us that the piece has been used and loved over the years; it has witnessed decades of life and has survived into the present.

As I progress through this journey of disease and healing, I want to remind myself to not turn away from reality, to always face my illness with the full realization of what is happening.  I’m hopeful that if I’m able to keep looking at the bandaged place with enough clarity, one day I will be able to view it as the place where the light enters me.