Where the light enters

finding meaning in mortality

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.

Raising energy for cancer

I recently went to a fundraiser for someone with breast cancer.  It felt a little strange; especially since I didn’t know the woman, and also because I have breast cancer myself.  But I went with my friend, Joy, to a concert and silent auction benefit for a woman named Lupe.  This is her second battle with breast cancer; she was originally diagnosed in 2013 with Stage 4 Metastatic Breast Cancer, and went into remission after a double mastectomy, chemo and radiation.  In May of this year, the cancer returned, identified by lesions in her upper arm and spine.

Lupe was there, walking around the benefit, seeming quite normal in knee-length boots and a pretty shawl, the tell-tale short hair style perhaps the only hint of a chemo past.  After her remission in 2013, she became a massage therapist so she could help other cancer patients.  I could imagine her small but strong hands bringing relief to someone’s achy muscles.

There were so many performers who came to the benefit that they had to extend the concert by an hour to accommodate them all.  An opening prayer was given by Grandfather Yellow Horse Man, a lecturer and spiritual counselor of native traditions.  He spoke of raising the energy so that the Great Spirit could heal Lupe.  He insisted that we humans can not heal people, but the energy we raise through music, chanting, or dancing, gets the attention of the Great Spirit who does have the ability to heal.  He chanted (or sang) a prayer for Lupe, his quavering voice rising above the drum, the raising of energy beginning to manifest in the large room.

A 13-year-old award-winning native flute player, Gaby Nagel, played next.  Her confidence was remarkable, even though some people seemingly fell asleep while she played.  I wondered what it would have been like to have had her confidence when I was her age.

My favorite part of the concert was the next act, the Aztec dancers, Tlaltlacayolotl.  A husband, wife, son, and daughter team, they were wonderful as they danced in their colorful native costumes, a wolf skull hanging over the father’s forehead, the son playing the drums while the other members of the family danced.  Between the dances, the father would explain in Spanish (translated by his daughter as he spoke) the meaning of the dances that they performed, and the metaphors employed.  He also spoke of raising energy for Lupe, saying that he had no money to give, but he could give her his dance and his energy.  And he really did give a lot of energy as he danced, sometimes running up the aisle between the audience members to have space for his energy to expand.  I sat next to the aisle, and I felt a special energy each time the father passed me, the long feathers flying, the shells around his ankles making their own music every time he moved.

Watching this family dancing and speaking as a team felt as if it were, in itself, a healing moment for me.  Something magical happened as they gave of themselves in this most primal way.  I wondered if Lupe felt this too.

There was another native flute player, Cristian Zamora, from South America, followed by Women of Heart, a Nammy Award-Winning drum group.  I had been interested in seeing them play, but for whatever reason, their performance didn’t speak to me the way the dancers’ had.  The best part of their act was when they invited Lupe up on stage to play with them, and seeing her play and learning that she played in her own drum circle.  Again I could imagine the small-but-strong hands being put to use, either giving relief to a cancer patient’s muscle aches or drumming up energy.

They were followed by another Nammy Award-Winning flute player, which was scheduled to be followed by an intermission and six more group performances, but it was already getting late, and we decided to call it a night since I had to get up early to go to work the next day.

I didn’t win anything, neither a door prize, nor a silent auction item, but I didn’t regret going.  I felt grateful to have been immersed in the energy raised by all the music, dancing, chanting, singing, and prayers being offered up to this woman with a grim prognosis ahead of her.  I found myself hoping for a second remission for her so that she can continue to offer the world the gift of her hands for a very long time to come.

I hope I never have to know what’s it like to learn that my cancer has returned, that it has spread throughout my body.  But if I do have to be given this news, I would like to think that there were enough people in the world who would care enough about me to do what they did for Lupe.  Not necessarily a benefit concert, but just the idea of offering yourself up to the Great Spirit, or the Creator, or whatever face you want to put to the great unknown energy of the world.  A gathering of souls to raise energy, to strike a drum, or lift a voice, in an attempt to heal a disease that medicine seemingly has been unable to cure.  Who knows why cancer goes into remission for some and not others.  Who knows why it sometimes disappears as quickly as it began.  At this stage, I’m not discounting anything.  If someone wants to offer up energy for me, I would gladly accept it, in whatever form it wants to take.

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.

The mother of beauty

A few days ago I bribed my boyfriend into taking me to Oakland Cemetery’s fall festival, Sunday in the Park.  I had been once several years ago, and I remembered how much I enjoyed seeing people dressed as Victorians wandering through one of the oldest and most beautiful cemeteries in Atlanta.

I didn’t have the stamina to walk the entire cemetery on this trip (it’s about 48 acres), but I did hold out long enough to visit a good bit of the grounds, sample some tasty Angel Fire 7 barbecue from a food truck, and take photos of some of the spectacular marble citizens who live at Oakland.  I also visited Margaret Mitchell’s grave, and stood over her like one of the mute angels that pepper the landscape, wondering how one shows reverence for a favorite long-dead author.  I ended up taking a quick photo of her headstone like a good tourist and stepping out of the much-trampled grass so someone else could do the same.

Margaret Mitchell's headstone

I also visited the section of the cemetery called Confederate Memorial Grounds, where approximately 6,900 soldiers lie, regimented even in death, in neat rows of nondescript headstones.  Around 3,000 of these men were unidentified.  The Lion of Atlanta, a huge lion sculpted from a single block of Georgia marble, honors these unknown men.

Lion of Atlanta

Lion of Atlanta

There were vendors set up along the paths  selling an eclectic assortment of oddities.  Ghoulish paintings, vintage clothing, and photos of funerary cherubim somehow blended with children having their faces painted and live jazz music.

Ren and Helen Davis, the authors of the award-winning book Atlanta’s Oakland Cemetery: An Illustrated History and Guide were there signing copies of their book, so of course I bought one.  Something both fascinating and a little bit creepy to read on these fabulous cool, fall evenings.

It was a great day for people-watching.  A lot of visitors had dressed for the occasion; some were wearing authentic-looking Victorian dress.  There was a flower-seller who looked like she could have come straight out of one of Dickens’ novels.  Some were dressed as dead Victorians.  Some were dressed as Victorians who had somehow had the misfortune of becoming vampires.  Some were dressed in what I can only describe as “gothic skank,” but they somehow fit into the theme of the day.  At any rate, it was highly entertaining to watch them all strolling side-by-side down the old brick-lined walkways.

I had briefly considered dressing up before abandoning the idea for pragmatic (i.e. sane) reasons.  Besides, in my bicentennial scarf, it’s possible that onlookers assumed that I lacked hair for a moribund (and thus spooky-enough) reason.  Which may or may not be true, so far as I know.  My stage-three tumor may or may not be the eventual death of me.  According to statistics, I have a seventy-five per cent change of being alive five years from now.  Which, of course, means that I have a twenty-five per cent chance of not being.

My mother survived just over five years from her diagnosis of breast cancer.  She survived just long enough to be counted as a “cancer survivor.”  And then she died.  Her tumor was also stage-three when it was found.

My oncologist tells me not to compare apples to oranges.  First of all, despite all the similarities, my mother’s cancer was quite different from mine.  Hers was what is referred to as “triple negative,” a cancer that recurs at a higher rate due to its not being responsive to estrogen, progesterone, or Herceptin.  Mine is highly sensitive to estrogen and progesterone, so its recurrence  can be hopefully prevented with hormone therapy down the road.  Her tumor was also of a type that tends to be more aggressive and  metastasizes with more frequency than mine.  If my cancer metastasizes, it will most likely go to my gastrointestinal tract or ovaries.  Her cancer was the type that goes mainly to the brain, lungs, liver, and bones, all of which it eventually did.  She was also quite a bit older than me and in poorer general health, which I suppose counts for something.

I try to listen to my oncologist and not compare my situation too much to that of my mother.  But it’s hard not to at least think about it, as it’s hard to not remember all the things that she went through in those last five years of her life.

So please forgive my morbid frame of mind as I walked the beautiful grounds of Oakland Cemetery, enjoying the loveliness of it all, but quite cognizant at the same time of my mortality.  It makes me think of a line from the poem “Sunday Morning” by Wallace Stevens in which he says, Death is the mother of beauty.  The sure knowledge of our death, and that of every other living creature, is what fills our lives with meaning.   Except for death, we could take all of the world’s beauty for granted, and even with death looming in the background, we sometimes still do.

Thankfully, there’s a lot of beauty to treasure in this world that hopefully makes all the fuss over life and death worthwhile.  Again, I think of Wallace’s “Sunday Morning,” whose final lines tell us:

Deer walk upon our mountains, and the quail
Whistle about us their spontaneous cries;
Sweet berries ripen in the wilderness;
And, in the isolation of the sky,
At evening, casual flocks of pigeons make
Ambiguous undulations as they sink,
Downward to darkness, on extended wings.

Oakland Angel

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.


Seeking the simple life

Since I’ve been scrutinizing my priorities and goals in life, I’ve come to the conclusion that I would really like a simple life.  One that brings me close to nature with more frequency.  One that I can be more active and involved in, and full of little pleasures that I can savor at leisure.  Like watching the sun rise from my deck as I drink a hot cup of tea.  Or being able to watch the spring bulbs break out in profusion across a country field.

All of these things have made it seem even more urgent that I find a new place to live.  I’ve lived in a county west of Atlanta for eight years now (except for the one year that I lived in Shanghai).  I’ve never really liked this town or the overbearing neighborhood that I live in (complete with manicured lawns and neighborhood lawn-nazis making sure that everyone nukes each weed as it appears).

I’d much rather live somewhere that pesticides aren’t seen as a must-have arsenal against weeds such as dandelions.  Side note: did you realize how wonderful dandelions really are?  They’re lovely in my opinion, but their leaves are also quite nutritious, their roots are medicinal, and they even pull nutrients from the deeper parts of the soil up into the topmost layer so that plants nearby can more readily take advantage of them.  But the homeowners association where I live views them instead as a horrible blight to be removed at any cost.

These suburban neighborhoods, in their overzealous tidiness and symmetrical plantings, are anything but natural.  I long to escape this environment and relocate to a woodsy corner somewhere that I can relax and feel as though I belong to nature instead of fighting against it.  Somewhere that I can be surrounded by trees and animals and wonderful dark nights without glaring streetlights.

After looking online for some time, I discovered (or re-discovered) a neighborhood called Big Canoe in the north Georgia mountains.  Even though it is a gated community, its philosophy seems to fit with mine.  They value the natural setting and work hard to preserve it for its residents.  Eight thousand acres of trails, woods, and nature are tucked away in Jasper, Georgia.  No street lights.  No lawns.  No hideous lines of Leyland cypress.  No ghastly deformed skeletons of mis-pruned Bradford pears.  So I decided to take a look at some of the homes they have for sale.

We’ve liked what we’ve seen so far of the area.  Just driving around with our real estate agent, we’ve already seen several deer, heard stories of bears hibernating under people’s decks, and seen lovely lakes, streams, waterfalls.  Not to mention the gorgeous long-range views from many of its summits.

I haven’t yet found the perfect home, but I’ve found some good contenders.  One house that my boyfriend and I both like is up on the mountain.  Literally.  It takes twenty minutes of winding (sometimes scary) roads to get there from the front gate. Its driveway requires a four-wheel drive (which luckily, I have, but my boyfriend doesn’t).  Its decks hang over the side of a hill and the view is quite exhilarating.  But there is no place on this rugged slope for a garden.  I wonder: could I live in a house where gardening is not really possible?  Even if I am surrounded by a gorgeous canopy of natural wonders, would I be willing to forfeit my small gardens of herbs, vegetables, and flowers?

It will take some real soul-searching for me to find the answer to these questions.  I haven’t had the time or energy lately to devote to my garden; it’s been quite neglected this summer.  My boyfriend has fought valiantly with the thorns and weeds and the overgrown beds, but it’s a hot mess at best.  So at the moment, I could easily take a break from gardening, but once I feel better, I’m afraid that bug will bite me again.  And then what would I do if I had no garden?  And no chance of creating one except for maybe a few pots on the deck?

So I have some pros and cons to debate.  What are my must-haves, and what can I live without?  Finding the simple life is turning out to be not that simple.

Another not-simple aspect of this whole house-hunting thing is, of course, money.  The simple life is evidently not cheap.  I’m finding out that I should have socked away some serious cash if I want to move out to the country.

I also realize that I’ve never even financed a home before on my own, so this will be a huge challenge for me.  My ex-husband always took care of that sort of thing.  I was complacent and willing to be taken care of, never foreseeing that I would be alone one day, without the safety net of a husband or parents.   I should have been more responsible, should have paid more attention to finances and practical matters.  So here I am in my mid-forties wondering how in the world I’m going to make this happen.

I think living in the mountains will likely make my life more stress-free.  But getting there will definitely not.  I’ve never been a person who handles stress well.  Any small obstacle will send me into hand-wringing agonies (and I’m not really exaggerating by much here).  I obsess over small matters, lose sleep over miniscule wrongs, fret over perceived injustices.  So searching for, and financing a new home, is going to weigh heavily on me for a while.  Until closing is complete, and I have the keys in my hand, I’ll most likely be a basket-case.

And possibly even afterwards.  But maybe, just maybe, there will be a light at the end of the tunnel.  A light that comes sneaking through the trees on the mountain, washing over my peaceful deck or patio, where I can finally sit and relax.  And finally have that nice, hot cup of tea.

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