The Grey in Pink’s Shadow

_{This is an essay I wrote a year ago in my composition class.  I’ve been waiting to find out if it was published in my school’s annual ENG123 collective before publishing it online, but I don’t care anymore.  Recently I was invited to take part in the annual girls-only Facebook status update thing, where we post something random like our bra color or our shoe size to (somehow) raise awareness for breast cancer.}

_{This is what I have to say about breast cancer awareness.}

—

A recent poll taken by USA Today revealed one in three adults feel that the ceaseless push to support breast cancer leaves other life-threatening diseases in the dust (Szabo, par. 5).  I am one of those adults.  At the age of nineteen I was diagnosed with a malignant brain tumor.  While my peers’ biggest worries were ten-page term papers, mine became the prospect of facing my own mortality prematurely.  I searched in vain for a fellow patient to talk to.  The leukemia survivor’s friend never got in touch with me.  When I signed up for a pen pal my age who’d survived brain cancer, I was paired with two girls who were both born with brain tumors and went through treatment as babies.  There is little to offer a brain cancer patient — most of us don’t live five years post-diagnosis, after all.  Yet pink is the color illuminating national monuments and decorating everyday household paraphernalia.  Breast cancer, the easier to spot, cheapest to diagnose, and more survivable of the two diseases is the one continually hogging the funding and research spotlight.

When it comes to breast cancer, if something is wrong inside, there is generally an indication on the outside (National Breast Cancer Foundation, “Signs and Symptoms”).  There’s a lump.  The skin is puckered.  There may even be abnormal discharge. It’s also possible that a change can be felt.  Women are encouraged to start examining their breasts at an early age to know what is normal for them, and to keep an eye out for any unusual changes in their feel or appearance.  Doctors also examine them during regular check-ups.  As stated by the American Cancer Society, “We don’t know how to prevent breast cancer, but we do know how to find it early, when the chance for successful treatment is greatest” (ABC’s).

Of course, sometimes breast cancer keeps quiet.  That’s where mammograms come into play.  The x-ray images they capture often indicate if there is cause for concern.  They can “find cancers when they are very small, often several years before a lump or change can be felt” and are “quick, easy, and safe” (ABC’s).  Women are encouraged to have an annual mammogram starting at the age of forty, when breast tissue begins to become less dense (NCI Fact Sheet, “Mammograms”).  Mammograms are relatively inexpensive tests, averaging around one hundred dollars, usually covered by health insurance. In fact, in most states, health insurance companies are required by law to “reimburse most or all of the cost” (NCI Fact Sheet, “Mammograms”).  Many women are even able to get them done free of charge— breast health is important.

As with any cancer, breast cancer is an unpredictable and life-threatening disease.  It can metastasize anywhere in the body, including such dangerous places as the lymph nodes, the lungs, or — fancy this — the brain.  It also takes a tremendous physical toll; chemotherapy can cause lapses in memory (commonly called “chemobrain”) that sometimes last several years after treatment ends.  Treatment can also deteriorate the bones, leaving patients with an increased risk for osteoporosis (“Advances,” 10-11).  Many women must have one or both of their breasts removed to fully rid themselves of the cancer.  Despite all this, however, breast cancer nowadays is a relatively survivable disease.  In fact, breast cancer survivors now make up approximately one fifth of the cancer survivor population (qtd. in Nordqvist, para. 2).  Certainly this is the result of the tireless effort to find (and fund) a cure.

Brain cancer, on the other hand, is a master of disguise.  There are no outward signs of this disease.  It shares its most common symptoms — headaches, nausea, dizziness, fatigue — with relatively innocuous problems: stress, PMS, and side-effects of numerous over-the-counter drugs.   I suffered from headaches at eighteen.  I woke up tired every morning.  I felt queasy a lot.  I was also a senior in high school, balancing homework with late-night theatre rehearsals,  eating when and what I could.  Headaches run in my family.  My wisdom teeth were coming in.  My only noticeable symptom, what we’ve come to call “visual anomalies,” saw me to an optometrist for a thorough eye exam.  The swollen optic nerves he found landed me in the first of what would become countless MRIs.  But I was lucky.  Most brain cancer patients don’t discover their own tumor until they have a seizure.

Simple physical tests can indicate if an abnormality exists, but they are unreliable (in fact, when I went to the school physician for persistent headaches, he tested me, and when I presented normal, assured me, “You don’t have a brain tumor” — imagine my relief).  The only way to truly discover a brain tumor is to perform an MRI scan of the head.  The only way to see a brain tumor clearly is to perform an MRI scan with an injection of contrast dye.  These scans are not cheap; on average, a scan of the brain with contrast (which is always necessary) costs roughly $2,500 nationwide (“Compare MRI Cost”).  What’s more, getting an MRI approved with insurance companies can be a hassle.  MRIs are not encouraged the way mammograms are.  There is no recommended age to be screened for brain cancer.  But like any cancer, early detection is key to successful brain cancer treatment as well.

Thanks to the blood-brain barrier, primary brain tumors cannot metastasize.  This one blessing is small consolation.  Brain tumors attack from within the very essence of our beings.   Even a benign tumor can wreak havoc if located properly.  Surgery can create problems or complicate existing deficiencies.  In many cases, due to a tumor’s location, surgery isn’t even an option; the risks outweigh the benefits.  Standard treatment works until it doesn’t — for me, that meant less than six months.  Brain cancer is aggressive and almost always grows back with a vengeance.  The clinical trial chemotherapy I currently take has worked miracles.  I am fortunate.  The reality is, however, that brain cancer’s prognosis is grim.  In the two years since I was diagnosed, three patients I knew lost their battle.  Two were my age.  The other shared a room with me during hospitalization for our second surgeries.  All three declined in health rapidly.

In 2011, it is estimated that 290,000 women will be diagnosed with breast cancer.  Of those women, roughly 40,000 will not survive longer than five years — fourteen percent (Breastcancer.org).  This means that eighty-six percent of women diagnosed with breast cancer in 2011 will survive the standard five year mark, and this number is increasing every year (Breastcancer.org).  The National Cancer Institute projects that approximately 22,000 new incidences of primary brain cancer will be diagnosed this year (“Snapshot”).  Comparatively, this is a much smaller number, half of the expected breast cancer mortalities.  However, thirty-three percent of those patients will lose their battles before five year passes —nearly twice the amount of expected breast cancer deaths.

Perhaps the reason breast cancer continues to dominate is because it is a “sexy” disease.  It infects a very important part of the body — women and men can agree on that.  Pink is pretty.  Grey is not.  There is nothing “sexy” about brain cancer.  There are no witty phrases or slogans that will sell on a t-shirt or silicon bracelet.  In the shadow of pink, brain cancer is lost.

Each time I go to the National Institutes of Health for my own MRI, I am devastated by the patients that surround me.    One processes information on a five-second delay.  One can’t remember how she got to the building.  Many are incapable of filling out their own simple paper work.  Some can’t function independently at all.  Each time, my heart shatters for their suffering and for their caregivers’ grief.  I cannot fathom the torture of watching a perfectly sentient loved one deteriorate into incoherent shambles — I cannot bear the thought that someday, the incoherent shamble in the corner could be me.

—

_{Works Cited}

_{– “A Snapshot of Brain and Central Nervous System Cancers.”  National Cancer Institute.  Oct. 2011.  Web.  12 Nov. 2011.}

_{– The American Cancer Society.  “ABC’s of Breast Cancer Early Detection.”  Pamphlet.  American Cancer Society, Inc.  2003.  No. 341601-Rev.4/11.}

_{– Breastcancer.org.  Breastcancer.org.  Web.  08 Nov. 2011.}

_{– CancerCare Connect.  “Advances in the Treatment of Breast Cancer.”  Booklet.  CancerCare.  2010.}

_{– “Compare MRI Cost.”  MRI Cost and Pricing Information.  Web.  06 Nov. 2011.}

_{– Kuntz, Christopher.  “Brain Cancer Survival Rate.”  Cancer Center.  3 May 2011.  Web.  12 Nov. 2011.}

_{– National Breast Cancer Foundation Official Site.  National Breast Cancer Foundation.  Web.  23 Oct. 2011.}

_{– National Cancer Institute Fact Sheet.  “Mammograms.”  National Cancer Institute at the National Institutes of Health.  Web.  30 Oct. 2011.}

_{– Nordqvist, Christian.  “Breast Cancer Detected From Screening Survival Rates Lower Than Expected.”  Medical News Today.  24 Oct. 2011.  Web.  25 Oct. 2011.}

_{– Szabo, Liz.  “Pink Ribbon Marketing Bring Mixed Emotions, Poll Finds.”  USA Today.  07 Oct. 2011.  Web.  23 Oct. 2011.}

Lesson #2 — Brain Surgery is (Relatively) Painless

I jumped through several different hoops on the road to diagnosis, the worst being a lumbar puncture to rule out multiple sclerosis.  Happily, the MS test was negative, and less spinal fluid in my head relieved pressure I didn’t realize existed; suddenly I could turn my head side to side with painless ease.  Unhappily, however, I wound up in bed chugging energy drinks for most of the Thanksgiving holiday (as being upright induced an excruciating headache from the sudden drop in spinal fluid, and caffeine helped recreate the fluid taken).  Most unhappily of all, the only remaining option for definitive diagnosis was a biopsy.

I cried.

I cried because “biopsy” in my case meant my scalp would be sliced and my skull sawed open to gain access to the unidentified anomaly sitting in my brain.  “Biopsy” in my case essentially meant brain surgery, and all I ever heard about brain surgery was that patients remained awake for the entire process.*

—I want to preface this by making it clear that every brain tumor journey is unique.  Tumor type, size, location, and grade affect symptom control, response/efficacy of treatment, and prognosis.  For some, tumor resection isn’t even an option, whether due to the tumor’s type or its location.  Some tumors, like mine, are considered “diffused”; the cancer is not one distinctive lump but innumerable micro-tumors scattered throughout the brain.  Some tumors are simply located such that attempting to remove it could potentially do more harm than good.  That said, most, if not all, brain cancer patients (or suspected brain cancer patients) must have some tissue removed in order to receive an accurate diagnosis.

A note about biopsies: there are two different kinds.  There is the less invasive needle biopsy, in which a small burr hole is drilled through the skull and a needle-like device is used to extract a small amount of suspicious tissue, and there is the open biopsy, in which part of the skull is removed so that the surgeon may extract more of the tissue in question, thus serving as both a biopsy and a debulking.  With the open biopsy, after tissue removal, the bone plate is replaced and secured with small titanium plates and screws in the corners.  The process of removing the bone plate leaves a little wiggle room, so generally the bone will be placed so that it meets the skull in front.  The space behind the plate will close over time, though if you touch your head, you’ll likely still be able to feel where that space is. (I can.)

When I asked my first neurosurgeon what the entire brain surgery process would entail, she told me, “Well, you’ll be awake, and then you’ll be awake.”*  Modern anesthetics are literally that good.  I was administered some kind of relaxant for the nerves, rolled into the OR, and the next thing I knew I was waking up in intensive care thinking I hadn’t been operated on yet.

Since my first MRI, I’ve had two brain surgeries: the obligatory biopsy, and a follow-up six months later to clean up the mess radiation therapy left behind.  While the truth is that both times I was terrified, if a surgery goes well (and usually, it does), recovery is a breeze.  No muscles are cut that make every breath or step an excruciating labor.  There are no nerves in the brain.  This doesn’t mean you won’t feel anything when you wake up— brain surgery is essentially trauma, after all.  Expect a headache.  Expect your scalp to be numb from your stitches to the crown of your head for a good while.  But don’t expect to be wailing in pain for months on end.

As I said before, and will likely continue to reiterate, the journey is different for every patient.  Fortunately for me (but perhaps unfortunately for the purposes of this blog), I’ve been inordinately lucky.  Both of my surgeries went exceptionally well.  This is not the case for everyone.  The potential exists for surgery to cause some deficits.  But know that if your doctor wants to operate, then he or she has likely weighed the pros and cons and decided surgery is the best course of action.  Good doctors will explain everything to you.  If they don’t, never hesitate to ask.  This is your brain, after all.

Remember, it’s okay to be scared.  But, as my first neurosurgeon joked, “It’s only brain surgery.”

**NO YOU WILL NOT BE AWAKE DURING BRAIN SURGERY**

Lesson #1 – MRIs Aren’t Scary

When a friend of mine began suffering from unexplained muscle tremors, she came to me with an all too familiar fear.  Her doctors, unable to find a definitive cause for the tremors, scheduled an MRI of her brain.  The impending diagnosis did not frighten her.  What she feared most was the unknown.  In my attempts to assuage my friend’s anxieties, I realized how exactly I should use this blog.  I won’t tell my story in broken up narratives of forced wit.  I won’t whine or complain about my situation to the Cosmic Void.  I will instead share what I’ve learned on my continuing journey from the rabbit-hearted coward I once was to the lion-hearted warrior I’m becoming.

During my first MRI scan, I cried.  Not because the machine causes any sort of pain.  Not because I dreaded what the scans would reveal.  Not even because I am claustrophobic.  No, I cried because I, the biggest eighteen-year-old baby in creation, had to be injected with contrast dye.  That meant that my arm had to be squeezed with a tourniquet and stuck with a needle in order for foreign liquid to be shot into my veins.  Blessed people that they are, one of the technicians graciously held my hand while another found a vein on my forearm. (Through tears I asked if they could stick me anywhere but the crook of my arm– an area far too squidgy for sharp metal penetration.)  The experience nearly ruined me, but I survived, and when they pulled me out of the machine, I left the hospital, relieved I would never have to experience such torment ever again.

Needless to say, the joke was on me.  I’ve since had innumerable MRIs, all with contrast, most with an IV port stuck right in the crook of my arm.  Thus, my advice to you today is this:

If you’re worried about an MRI scan, don’t be.

You will not be harmed or tortured in any way.  In fact, scans are easy as pie.  They usually take between 45 to 60 minutes, longer if you move, so don’t.  Heavy duty magnets in the machine means no metal jewelry or accessories, underwire bras excluded.  To muffle the volume (it ain’t called magnetic resonance imaging for nothin’), you will be given ear plugs and large, padded headphones. You lie on your back and a small, plastic “mask” of sorts slides over your head to help keep it immobilized.  Sometimes a cushion is inserted between the mask and your ears to ensure immobilization.  There is typically a small mirror above your eyes so you’re able to see outside of the machine.  Then you’re just moved into the MRI tunnel and the scan begins.  Most machines keep a breeze of cool air on your face, which I find helpful; inhaling warm airs lends itself to feeling trapped.  Also, keep in mind that not only can the technicians see you in the machine, they can hear you.  So don’t start singing to yourself or anything equally embarrassing; which goes back to my first point: keep still.  You can squirm your hands and feet if you need to, but keep that head as stationary as possible.

Feel free to get comfy!  Take off your shoes, request a warm blanket, ask if you can listen to music during your scan.  I once brought a CD I made and asked the technician if he could play it during my scan.  The music may play in the room or it may even stream directly into your headphones.  The latter is preferable as it’s difficult to hear anything but the magnets during a scan unless sound is delivered straight to your ears.

A note about contrast dye: it’s some chilly stuff.  Be prepared for an odd, cool sensation when you’re injected (and you will be injected).  Don’t be alarmed if you smell something strange as well.  It’s just the gadolinium doing its job.

Most importantly through the whole experience is to close your eyes and remember to breathe.  There’s no way of knowing what your scans will yield and there’s little point in worrying about it now.

Results can be scary.  MRIs are not.

Mission Statement

With the greatest possible respect, I am sick to death of all the fund-raising and support for breast cancer.  It’s absolutely everywhere.  Buy it in pink and you contribute x amount of money in proceeds towards the fight against breast cancer!!!

…No offense, but at this point, isn’t breast cancer… curable?  Reversible?  I mean, with all the awareness out there, if you’re doing what you’re supposed to be doing, can’t you catch it in time?  I haven’t been around long enough to really know what I’m talking about in that arena, and I apologize to anyone whose loved one was taken by the treacherous disease.  But what the rest of the world seems to forget is: there are a thousand and twelve other kinds of cancers out there that millions of people are suffering from everyday. And because they’re not getting the mass attention that breast cancer gets, they’re not getting the funds, therefore not getting advancements in medicine, therefore patients aren’t living the long and healthy life they’re entitled to be living.

I am twenty years old and a year ago, I was diagnosed with an anaplastic astrocytoma, otherwise known as a grade III glioma.

Otherwise known as brain cancer.

When I finally pulled myself from the puddle of self-pity I was wallowing in,  I set out to learn about the nasty beast in my head.  What I found thoroughly disappointed me: very few and very dated articles relaying nothing but gloom and doom and hopelessness.  Maybe it’s because brain tumor patients don’t live long enough, but where is the support for us?  I don’t ever see anything for sale in grey whose proceeds are donated in support of brain cancer.  I don’t see any commercials asking for donations.  I can hardly find any useful information on the intenet.

And that’s why I’m here.

It’s shocked and appalled me how uninformed many brain cancer patients and caregivers actually are.  I’ve trolled through countless message boards where people don’t even know about Temodar!  (A standard  treatment; referred to as “the magic bullet for brain tumors” by one of my doctors.)  Throughout this battle, I’ve wanted to be able to help people and give back in some way.  And this is the best way I can think of to do it.

One thing I’ve learned on this journey is that every brain tumor (and possibly cancer) patient’s story is different.  What I have to offer may not be helpful to everyone.  But if one person can come away from this helped in even the tiniest of ways, well, then… Mission Accomplished.