Can­cer lan­guage all wrong

The Prince George Citizen - - Opinion - — Alex Dvo­rak, Wash­ing­ton Post

Iam not a “fighter” be­cause I sur­vived Hodgkin’s lym­phoma at 19. I am lucky among the un­lucky. In the face of se­ri­ous ill­ness, espe­cially can­cer, we im­me­di­ately de­clare patients as “fight­ers,” or talk about “win­ning” or “los­ing” the bat­tle with the dis­ease. That stock phras­ing shows up in news head­lines and char­ity cam­paigns; it’s spo­ken by politi­cians, celebri­ties and well-mean­ing ac­quain­tances alike. Each per­son has the right to de­scribe their ex­pe­ri­ence of their dis­ease as they see fit, but it of­ten feels im­pos­si­ble to avoid terms like “at­tack,” “in­vade,” and “fight,” which are so deeply em­bed­ded in can­cer cul­ture.

For me, mil­i­tary lan­guage was a way for the peo­ple around me to evade the com­plex re­al­i­ties that ac­com­pa­nied my di­ag­no­sis. It put the gray ar­eas of liv­ing with can­cer – the phys­i­cal an­guish and the ex­is­ten­tial un­cer­tainty – into stark, con­fronta­tional terms. That vo­cab­u­lary stamped me as brave and heroic when I felt most weak and de­fense­less. I was con­vinced that I would let ev­ery­body down.

When news of my di­ag­no­sis broke out, my com­mu­nity for­got I was the same per­son. They saw only ill­ness and it showed in the way they spoke to me. They tried to con­sole me with en­cour­age­ment.

One fam­ily friend con­fided, “I’m close with a woman who had a breast growth and worked full time dur­ing treat­ment, didn’t

even lose her hair.”

A class­mate of­fered: “I read about this man who cured his in­op­er­a­ble ma­lig­nancy on his own. Poof, gone one day to the next.”

Within days, I had dropped out of col­lege and moved home to get chemo­ther­apy full-time; my eye­lashes and eye­brows fell out. I couldn’t mea­sure up to these can­cer prodi­gies.

But I did the best I could to muster the en­ergy and com­po­sure that these words de­manded of me. I tried to hide the atroc­i­ties of my daily life from the well-wish­ers who seemed un­able to ac­cept life’s im­per­ma­nence with me. I hid my IV pole in my bed­room closet, along with a bag of pill bot­tles and the needles I used to give my­self shots of white blood cells. De­spite my best ef­forts, my basic pres­ence, a walk­ing re­minder of death, could darken the mood in the room. I lifted a hood over my can­cer tell – a shiny head – ex­changed the word “can­cer” for “sick” and shoved down my anx­i­ety to ap­pear put-to­gether.

Peo­ple wanted me to be the face of can­cer – up­beat and op­ti­mistic, de­spite my suf­fer­ing – while lym­phoma acted like a tor­nado in my life, tear­ing through any nor­malcy. In others’ eyes, my di­ag­no­sis had put me on the fast track to saint­hood, but on the in­side, I was an angst-filled teenager, feel­ing sin­gled out and mis­un­der­stood. I didn’t know how to ex­press how others’ vo­cab­u­lary af­fected me. Eventually, my dad had to act as a gate­keeper, po­litely telling friends I wasn’t up for vis­i­tors. My mount­ing isolation length­ened the road to re­cov­ery.

When a fel­low patient died, peo­ple would say “she lost her bat­tle, but you’ll win yours.” They thought that this metaphor would up­lift me. But the im­pli­ca­tion that some­one else died be­cause they had, in some way, failed, or not been per­sis­tent enough to sur­vive, put more pres­sure on my own health.

The only war rag­ing on was the one be­tween my doc­tors and my lym­phoma. My on­col­o­gists or­dered chemo, which coursed through my veins to com­bat the tu­mour grow­ing on my heart and lungs. Tu­mour vs. chemo. I was a body stuck in the mid­dle.

Af­ter my course of treat­ment was fin­ished, my par­ents threw a din­ner party, invit­ing fam­ily friends who made us weekly meals and drove me to chemo, through bliz­zards, in their four-wheel drives. I wanted our loved ones to en­joy their sense of relief, but I didn’t un­der­stand why I was the fo­cus of cel­e­bra­tion.

Every­thing had hap­pened to me. Un­like a soldier given an ex­ter­nal en­emy, mine was internal – when it came down to it, the en­emy was me. I was to blame for my fam­ily’s un­re­lent­ing fear and sleep­less nights. Ev­ery con­grat­u­la­tory “you won the bat­tle” just re­minded me of what I’d re­ally, pri­vately won: post-trau­matic stress, ago­ra­pho­bia and addiction to mor­phine. I didn’t feel vic­to­ri­ous. Now, I had to piece my life to­gether, wracked with guilt over why I’d lived, while others – who I’d been sure would sur­vive – hadn’t.

Yet de­spite this ex­pe­ri­ence, when I was in re­mis­sion and learned my friend was di­ag­nosed with leukemia, I fell back on the eu­phemistic lan­guage I’d re­jected. I rushed to the hos­pi­tal to spend time with her. Her morale was low; she was up­set at her lack of freedom. “Nurses walk in and out, these IVs are stuck to me, there’s no pri­vacy,” she said. She asked if I knew any­one with the dis­ease. I said yes and then clammed up. I didn’t want to di­vulge that he’d died.

Read­ing my ex­pres­sion, my friend told me, “Alex, I know peo­ple die from what I have. We can say it out loud.” Even as a sur­vivor, I’d fallen into the pat­tern of try­ing to shield her, through lan­guage, from the dan­gers al­ready in­side her body. From that mo­ment on, we had an un­der­stand­ing: no tip­toe­ing al­lowed, even with a dif­fi­cult topic. That un­der­stand­ing bonded us forever.

What we both craved most dur­ing our treat­ment was open­ness.

We didn’t want peo­ple to hold us up as brave war­riors; we wanted them to face the dis­com­fort with us. The sick and the healthy are on the same side – all scared of the same mal­ady.

But the de­struc­tive­ness of can­cer can’t be glossed over with cliches.

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