Where the light enters

finding meaning in mortality

Category: Cancer Treatment

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fighting cancer with the yew tree

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

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

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

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

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

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

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

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

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

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

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

Last dance with the red devil

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

10 (or 11) reasons to love being bald

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And, last but not least…

10.  No more bad hair days!

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

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

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

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

 

Stalking the wild caribou: post-chemo eating adventures

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

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

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

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

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

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

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

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

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

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

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

Pretty woman to the rescue!

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

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

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

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

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

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

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

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

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

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

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?