Where the light enters

finding meaning in mortality

Author: Michelle (page 2 of 2)

Stalking the wild caribou: post-chemo eating adventures

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

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

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

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

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

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

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

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

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

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

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

Pretty woman to the rescue!

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

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

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

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

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

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

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

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

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

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

Battling the thief of time

The 18th-century poet Edward Young said, “Procrastination is the thief of time.”  I must admit that I’ve been robbed by this thief more times that I can count.  How many of my dreams have been penciled in on the calendar of “one day”?  One day I will complete the first-draft of a novel.  One day I will organize a book-length collection of my poems and submit it to a publisher. One day I will buy a tiny farm and raise chickens and herbs.

After years of relegating the important things to “one day,” you wake up and realize that you’ve accomplished very little of what you always dreamed you would do.  I feel as though I’ve lost twenty years or more of effort that could have advanced me toward my goals.  Even if I had spent just five minutes each day of those twenty years working toward fulfilling my dreams, I would most likely be well on the way to realizing them by now.

The blog zen habits has a challenge for the month of September that aims to fight this thief.  And it only requires five minutes a day.  The rules of the challenge are

  1. Commit publicly (on social media, to your friends, family and coworkers, however you want) to doing this every day for the rest of this month.
  2. Each day, spend just 5 minutes doing an Unprocrastination Session (see next step).
  3. Pick an important task to focus on, clear away all distractions, set a timer for 5 minutes, and do nothing but that task.
    You cannot switch tasks during this session.  You cannot check on something real quick.  You cannot get up to clean something.  You can only sit there, with that one task, and either focus on the task or sit there and do nothing.
  4. When you get the urge to switch tasks, don’t switch. Just stay with the urge. Watch it, let it surge, then let it fade. Return to your task.
  5. When the timer goes off, success!  You can keep going if you want, or take a break and go again, but neither is necessary. Just 5 minutes a day is all that’s required for success.
  6. Yes, even do your 5-minute sessions on the weekend.  Pick a personal project to focus on during those days if you like.

It sounds so simple.  Just five minutes a day.  And yet I feel an evil hesitation in accepting the challenge.  What is it in my feeble brain that resists any effort in attempting to do what’s important to me?  Is it fear of failure?  Is it fear of success (because face it, success would open its own can of worms)?  Or am I just a supremely lazy creature who cringes at any intimation of actual work?

Whatever the reason for my hesitation, I am nevertheless accepting the challenge.   I hereby commit to working five minutes a day on putting together poetry submissions for possible publication (something I have avoided for many years).  There.  Now it’s public and I can’t pretend that I never agreed to it.   These five-minute sessions will be carved in stone on my to-do list for the rest of the month.  No.   matter.  what.

I’m not sure how much can be accomplished in five minutes a day, but I guess I’ll find out.  If you did the challenge religiously for an entire month, you would have two and a half hours of work under your belt.   Which is two and a half hours closer to your dream than you would have been otherwise.  Maybe in and of itself it’s not a huge step.  But from the point of view of building a good habit, it might be priceless.

If anyone out there would like to commit to your own five-minute Unprocrastination Session, feel free to let me know what your goal is by leaving a  comment.  And good luck in your attempt to stop the thief!

 

The gift of friendship

I guess you never realize how many friends you truly have until something happens.  And by “until something happens,” I mean until something bad happens.  Like being diagnosed with a disease that is going to suck for at least the next six months, maybe longer.

I feel very lucky to say that since my diagnosis has “come out of the closet,” a lot of people have stepped forward and proven themselves worthy of the term “friend.”  Very worthy, I must say.

I have had so many sincere offers of help in the past few weeks that I feel overwhelmed.  Overwhelmed in a good way, mind you.  But the outpouring of concern and aid has really surprised me.

But why am I so surprised?  I obviously have had the good fortune to know a lot of really fabulous, good-hearted individuals.  I think that working at a non-profit has helped introduce me to many kind and wonderful people (not that kind people don’t work at for-profit companies, but non-profits seem to draw them like flies to a cow’s patootie).

Many of these wonderful co-workers put together a gift package for me last week.  It’s somewhat of a misnomer to call it a “package” because it consisted of a large basket and three gigantic overflowing bags of goodies that they so thoughtfully curated for me.  There were far too many items to remember to list them all, but among the treasures were a snuggly plush blanket, a lovely soft wrap that buttons in front, a wine-colored scarf (that perfectly matches a new shirt I just bought), several books (including an inspiring one on friendship), a meditative coloring kit, a very cool water bottle by S’well, magazines, snacks, supplements, a beautiful soft-pink orchid, numerous lotions, shower gels, soaps, mouthwash (to battle the dry mouth that chemo will inevitably bring), drinks, a variety of teas, hand sanitizer, tissues, skin care oils, and many other items that I’m sure I’m leaving out.  Whew.

I think I’m fully prepared for any contingency that chemo can bring on, thanks to these awesome people that I’m so happy to call my friends.  They’ve fortified me physically as well as emotionally for what may come. When I returned to work on Tuesday, there was even an adorable felted animal on my desk with a note saying, “Just for you — a very rare southeastern bat squirrel!”  He even came with his own equally adorable felted pumpkin.

felted squirrel and pumpkin

That’s not to mention the offers of help… offers to accompany me to appointments, to cook meals for me, to clean my house, to just sit and talk, to be there.

Many times I have found myself wondering how can I ever repay these friends?.  Not that friendship can be calculated like a tit-for-tat scorecard, but really, what could I ever give them that could come close to what they’ve given me?

The short-story writer, Katherine Mansfield, once wrote in a letter to a friend, “I am treating you as my friend, asking you to share my present minuses in the hope that I can ask you to share my future plusses.”  My friends are sharing my present minuses like connoisseurs of tribulation.  Maybe one day, when I have successfully followed the crumbs that lead out of this dark forest, I will have “plusses” that I can share with them as well.

Wiggin’ Out

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

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

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

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

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

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

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

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

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

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

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.

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