Where the light enters

finding meaning in mortality

Tag: 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.

 

Drumming up some healing energy

I’ve always had an interest in drumming.  I learned the violin as a child, probably because my mother was more accepting of the noise a violin would make in a child’s hands than the sound of drums in… well, in anyone’s hands.  The violin was elegant from my mother’s perspective; she probably thought of drums as belonging to rock ‘n’ roll hoodlums or hippies (If you’re not already getting the picture, my mother was a very prim, straight-laced woman).  We also had a piano in the house which my mother played.  But despite her best efforts, I’ve always been drawn to the sound of drums.  Maybe it speaks to a primordial instinct within me, the drumbeat reverberating inside me almost like a second heartbeat.  I started taking tap dance lessons last year, I think in part because it felt as though I was beating a drumbeat with my feet (and also because I love the old Fred Astaire movies).

But after going to a benefit concert in November where there were several performers playing traditional drums such as the djembe and Native American hand drums (see my previous post), my interest in drumming has been renewed.  So on Cyber Monday, I took a leap:  I found a great deal online for a Djembe, which is defined as a rope-tuned, skin-covered drum played with the bare hands, originally from West Africa.  I was nervous buying it unseen since I don’t know the first thing about drums, but my fears faded away when it arrived.  The drum was lovely, and it had a nice resonant sound to it when I tentatively tested it out.  The poodle ran and hid the first few times I played it, but she eventually decided that it was safe to return (i.e. maybe mommy hasn’t entirely lost her mind), and now just lies next to me as I play, occasionally shooting me a questioning look with her big raised poodle eyebrows.

I found some great videos by World Drum Club on YouTube that provided me with my first djembe lessons.  I was immediately hooked.  Now I make sure to practice at least a little every day.  I’ve found more great videos to watch to learn new rhythms, and I’m contemplating working up the courage to join a drum circle.

As I googled information about the drum, I ran across some interesting online articles about using drums for healing purposes.  I found a good summary article on aboutreligion.  The article states that therapeutic rhythm techniques have been used for thousands of years to create and maintain physical, mental, and spiritual health.  It lists many different therapeutic drum benefits including the calming, focusing, and healing effects of drumming on Alzheimer’s patients, autistic children, emotionally disturbed teens, recovering addicts, trauma patients, and prison and homeless populations.  Study results demonstrate that drumming is a valuable treatment for stress, fatigue, anxiety, hypertension, asthma, chronic pain, arthritis, mental illness, migraines, cancer, multiple sclerosis, Parkinson’s disease, stroke, paralysis, emotional disorders, and a wide range of physical disabilities.  One study cited found that group drumming actually increases cancer-killing cells, which help the body combat cancer as well as other viruses, including AIDS.  

I was excited, but skeptical.  How could something as simple as playing a drum have such beneficial effects on the body?  According to the article, one theory as to why drumming is so beneficial is that drumming permeates the entire brain.  Vision for example is in one part of the brain, speech another, but drumming accesses the whole brain.  The sound of drumming generates dynamic neuronal connections in all parts of the brain even where there is significant damage or impairment such as in Attention Deficit Disorder (ADD).

I hadn’t realized any of this when I ordered my drum, but I had somehow sensed that creating my own energy through music might somehow help me.  I thought that not only would it help me relax, but maybe I could use it as a meditative device.  This idea apparently has some research behind it; a study by Barry Quinn, Ph.D., found that even a brief drumming session can double alpha brain wave activity, dramatically reducing stress.  The brain changes from Beta waves (focused concentration and activity) to Alpha waves (calm and relaxed), producing feelings of euphoria and well-being.  Alpha activity is associated with meditation, shamanic trance, and integrative modes of consciousness.

I definitely could use more alpha waves right now; having cancer is a seriously stressful situation to be in.  Not only is there the question of living or dying, but the stresses of the treatments themselves, the question of lumpectomy versus mastectomy, the financial drain (I have decent insurance, but there are so many things that aren’t covered, or are only partially covered), the inability to perform all of your job duties within the normal time frame, et cetera.   I would be very thankful for all the alpha brain waves I can get to counteract these stresses.  My monkey brain makes it hard to even sit for meditation on most days; maybe drumming will allow me to reach enough of a meditative state to return to daily sitting.

I feel thankful to the benefit concert for allowing me to see the possibilities of drumming up my own energy.  I will try to raise energy for my own healing process, and if I get good at drumming up energy, maybe I can eventually raise it for others as well.  That is, if the poodle can handle all the noise.

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.

 

Chemo Daze: Pete the Port

A week ago last Friday, I had an out-patient surgery designed to make my life easier and safer while getting chemotherapy infusions.  My surgeon implanted a chemo port just below my right collarbone.  Instead of connecting my chemo IV to a vein in my arm, all of my infusions will go through the port.

I knew this was a necessary evil.  Evidently one of my chemo drugs is so caustic and nasty that if it leaks underneath the skin, it can do quite a bit of damage.  So the port is there to simplify treatments, as well as to protect me from the treatment itself.

I opted for only local anesthesia during the surgery because I wanted to have some idea of the process as it was happening.  Unfortunately, the anesthesiologist gave me something to “relax” me which made me promptly fall asleep as soon as the procedure got underway.  The only thing I remember is being wrapped up “like a burrito” as the nurse said, with my arms strapped to my sides.  The next thing I knew, it was over, and I was being wheeled back to the recovery room.

Two things surprised me when I first looked in the mirror at my new “implant.”  One: it was huge, sticking out of my chest like a ghastly alien who had decided to take up residence in my body.  And two: the tube wasn’t fed down into my chest like the surgeon had told me it would be, but was attached to a vein in my neck.

It was grisly.  It stuck out from my chest and neck in gruesome relief, a Frankensteinish adaptation that made my stomach turn.

My first impulse was to start shouting for the surgeon to come remove this thing from my body pronto.  I couldn’t see how I would ever get used to it being inside me, and worse, sticking out of me.  I couldn’t turn my neck, I couldn’t touch it.  I couldn’t even look at it.

But I stuffed my panic back inside and got dressed.  I told myself it’s only temporary.  I told myself other people get ports all the time.  Somehow they find a way to live with it.

For a few days, I tried to ignore it, tried to forget that it was there.  Which was pretty hard to do considering that I wasn’t able to do anything that required the use of my neck muscles without experiencing intense pain. The first night I was unable to lie down in bed, so I tried sleeping in a recliner.  I’ve never been able to sleep sitting upright, so that was a short-lived experiment.

It took me about a week to become resigned to the idea of this thing being in my body for at least the next six months.  Sleeping had become somewhat easier by then; I could even turn onto my right side for brief periods of time.  I bought a few shirts with collars that would hide the reflection of the weirdness every time I passed a mirror.

At the time of my first chemo, it had been in me for almost a week.  It worked as it was intended to during the infusion; for some reason, I was surprised that it actually worked so well.  My alien had proved useful.  It was at this point that I decided we needed to be on more intimate terms.

If we were going to be friends, he needed a name.  I decided after all of a three-second consideration that I would call him “Pete.”  I guess as in “Pete the Port.”  Not terribly original, but it seemed a good-enough name for a chunk of plastic.  My boyfriend suggested I call him “Starboard,” but I didn’t think that was funny.  My friend who underwent chemo several years ago called her port “Athena.”  But I wasn’t in a mythological mood. So Pete it was.

Pete and I have been together almost two weeks now.  I can’t say we’re best buds yet, but he is at least letting me get some sleep these days.  I suppose I may as well get used to him hanging around with me.  Like it or not, he’s going to be a part of my life for a while.  At least our relationship is a functional one.  He helps me get the drugs that will hopefully heal me, and occasionally, I let him peek out of my collar to watch the world pass by.

Chemo Daze: I Meet the Red Devil

Last Thursday was my much-anticipated first chemotherapy treatment.  I had read about the two drugs I would be receiving (Adriamycin and Cytoxan), and had been prepped by my friend who underwent the same course over four years ago.  But still, I was nervous, not knowing exactly what was going to happen.

I arrive at nine o’clock, a nurse draws blood through my still-sore port (I’ve only had it a week at this point), and we move on to the infusion room.  She tells me about a cream that can be applied to the port an hour before my appointment to make it somewhat numb.  I vaguely wonder why I haven’t been told about the cream before my appointment.  Seems like that would have been a nice tidbit of information to have beforehand.

I am then given a quick “tour” of the infusion room.  It’s a long room with windows on one end with multiple recliners.  Some people are already there, strapped to an IV.  I notice curiously that they all have hair.  There are snacks and drinks in one corner, and a nurse’s station in the other corner.  My boyfriend has come with me; we carry bags equivalent to a weekend getaway.  I have a blanket, a Thermos of ice chips, a cooler of snacks and drinks, and books and notebooks.  We settle into a pair of recliners near the window and wait.

First I am given a crash course in the drugs I’m about to receive.  A friendly nurse has me sign a paper that I have agreed to be treated with these chemotherapy agents.  I feel like I’m signing my life away.  She goes over the major side effects such as nausea, fatigue and hair loss.  She tells me I can avoid mouth sores by keeping chipped ice in my mouth during the Adriamycin infusion (which she familiarly refers to as the Red Devil).  I was forewarned by my friend about the benefits of ice chips, so I’ve come prepared.  But I find myself again thinking that this is the kind of information you should give your patients before they show up for chemo.

Before I can even start the chemo drugs themselves, I’m given pre-meds intravenously.  These include anti-nausea drugs and a steroid.  The friendly nurse tells me the steroid may give me facial flushing, and it may keep me up that night.  I have nowhere to go the next day so I don’t really care.  It takes about twenty minutes to get the pre-meds in my system.  All I notice at the end of it is a slight headache and a weird taste in my mouth.

Then the nurse introduces me to the Red Devil.  She pushes her syringe into the IV slowly; the drug in the syringe really is red (I thought maybe it was a metaphorical term).  It looks like red Kool-Aid going into my veins; it even feels cool since it’s kept in the fridge.  I try to make friends with the Red Devil, telling myself he’s helping me to kill the cancer cells in my body.  I even thank him silently as his poison enters my body, imagining the bad cells dying, and the good cells remaining unharmed.  I suck on ice chips the entire time this is going on; my hands are also cold from holding the cup of ice chips that my boyfriend continuously ladles out, so I’m huddled under my electric blanket.

It doesn’t take long before the Red Devil has spent himself, and I can ditch the ice chips in favor of some water. The Cytoxan will take a while to drip, so I settle in with a book.  I tell myself this will be good reading time.

It doesn’t seem as though I’ve been reading very long (although I’m pretty sure it was close to an hour) when my machine beeps, and my time in the reclining chair has come to an end.  We pack up our voluminous bags and head out.  I expect to feel strange, but I don’t really notice anything yet.  Not anything I can put my finger on anyway.

We head to the pharmacy to get the port cream and anti-nausea medication.  I recently had a bout of food poisoning and am in no mood to be nauseated again so soon.  We also pick up some Claritin; tomorrow I will get a shot of Neulasta to help keep my white cell count high, and one of the side effects of Neulasta is bone pain.  But evidently, someone discovered that it you take Claritin a few days before and after, you can alleviate some of that pain.  No one is sure how it works, which makes me suspicious, but I buy some anyway.  What could it hurt?

The rest of the day Thursday I expect to be sick or to start to feel some strange and disgusting symptom, but nothing ever comes.  Friday the same thing: I take my anti-nausea meds preemptively though, just in case. Saturday morning: nothing.  I’m beginning to wonder if they didn’t accidentally give me Kool-Aid and someone drank the Adriamycin at their picnic.  But by Saturday evening, I’m beginning to feel the fatigue that is so much talked about.  I come home from grocery shopping and c-r-a-s-h.

Sunday: pretty much crash-day part two . I stay in bed forever on Sunday morning, take a nap after lunch, and another nap after dinner.  Sunday is the worst day so far.  By Monday I’m recovering from it all, still feeling a bit bobble-headed, as I tell my boyfriend.  You’ve always been bobble-headed, he says.  This may be true.  But I’m thinking it’s what is referred to as “Chemo Brain.”  I prefer to call it Chemo Daze due to how long it seems to last.

My next meeting with the Red Devil is set for next Thursday.  I’m already wondering how our second date will go.  Should I make a special effort on my part?  A new outfit?  Pay more attention to my make-up?  And what can I expect from him?  Will he be glad to see me?  Will he at least bring me flowers?

The new priorities

It seems apparent to me that my new cancer diagnosis has shifted my priorities.  It has added urgency to some of the things that I wanted to do in my life such as writing that unfinished novel (okay, writing the un-started novel).  But instead of the “Bucket List” that comes to mind for many people, it has shifted my attention away from the flashy things in life and has focused my consciousness on simpler things.  I have no interest in skydiving or traveling to exotic locales.  Instead I feel drawn to the things that have been with me all along.

There are so many mysteries in nature, so many dramas unfolding around you or just outside your window.  A spider web glistening with the morning’s dew, a cricket singing at night as you try to fall asleep.  Your dog’s excitement at seeing you begin to stir in the morning.  All of these things seem to hold more meaning to me at the moment than anything that might make someone’s list-of-things-to-do-before-I-die.

Of course there’s nothing wrong with wanting to see the Eiffel Tower before you die, or wanting to climb up to the summit of Mount Fuji.  It’s entirely possible that either of these trips could add meaning to your life.  But that kind of trip is few and far between to rely on for true meaning.  It would seem to say that your “normal” life was devoid of meaning which I don’t think is true at all.  I think our lives are likely full of meaningful moments if we only paid more attention.

Nature is a great place to start looking for meaning.  As Eckhart Tolle said, “Nature can bring you to stillness. That is its gift to you.”  Being still is talked about in lots of literature as being a healing practice in itself.  Stillness is where we connect with our deeper selves, and where we can connect to others as well.

Nature can bring you to stillness. That is its gift to you. – Eckhart Tolle

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One of my new priorities is spending time with nature, just sitting and paying attention to what’s around me. Watching a dragonfly rest on a stone, or noticing the way the hummingbird and bumblebee dance with one another in competition for the same flower.  These simple acts that normally go unnoticed every day suddenly seem to have more significance for me.

I’ve also been evaluating my current lifestyle and finding that it comes up short from what I really want in my life.  My life lately has consisted of commuting an hour and a half, working at a computer, commuting another hour and a half, and then eating dinner in front of the television before going to bed.  I’ve been in a rut for a while now, and haven’t been motivated to climb out of it.  A new priority in my life will be to figure out how to change this cycle.  There has to be more to life than sitting in traffic and wondering what happened to my dreams.

Another new priority for me is being social.  I was very surprised by the outpouring of concern when I revealed my diagnosis.  So many people have been ready to help me, and have helped me more than I would have thought possible.  Even a text message from someone saying, “Thinking of you today” has meant worlds to me. Being social doesn’t come easily to me.  I’m a true introvert, one who gets satisfaction from within instead of from the outside world.  I don’t normally need to be validated by the opinions of others, and I don’t feel lonely just by being alone.  I’ve often preferred to be alone with my thoughts and my reading than to be included in a group.

But surprisingly, my new outlook seems to include others more than it ever has.  I find myself drawn into conversations and social groups without feeling regret at putting the book I was reading down.  I’m even contemplating seeking out a support group to attend, even if it means missing out on a few hours of reading.

Which brings me to another new priority: reading.  I’ve always been a reader.  Ever since I learned to read at the age of three, I’ve gone nowhere without at least one book in my tote bag (and sometimes several).  But I realized when I was facing the possibility of a shortened life that there were so many unread books on my list. How could I possibly die without reading Joyce’s Ulysses or before I’ve read every single book that Charles Dickens ever wrote (and yes, this is really on my reading list)?  So I’ve re-worked my reading list to ensure that I’m reading the books that are most important to me first; the newest issue of Glamour that just arrived in the mail can wait.

It’s one thing to realize what is important in your life and quite another to actually change your life to incorporate the important things.  This will be my challenge now as I work toward a more meaningful life and attempt to put what’s important to me first on the day’s agenda.  Changing my reading list will be the easiest to accomplish; I’ve already decided that my chemo infusion times will be reading time.  I don’t think that joining social groups will prove too difficult.  But how to change a long commute?  How to get back to the dream of one day writing a novel?  Those will be the true challenges that I’ll have to face.  But I feel like I’m at least traveling in the right direction now with my new priorities leading the way.

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.

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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.