Away from Home

uring her initial ﬁght against cancer, MaraquicklybecameahouseholdnameinPuertoRico.Attheage of 18 she developed an aggressive form of head and neckcancer and received several rounds of surgery, radiation, andchemotherapy. She came to our hospital two years ago fordeﬁnitive surgical resection and reconstruction which wasdeemed a success. She was then seen on a local televisionshowtalkingabouthercancercourse,treatment,andthenearfull recovery. We were referred to as ‘‘the American hospitalwith miraculous cancer cure.’’UnfortunatelyMara’scancerrelapsedshortlyafter,andshereceived further treatments in Puerto Rico and the U.S. Al-though she suffered severe side effects from chemothera-peutic regimens andrequired a feeding tube for nutrition andmedications, her cancer was kept at bay.Butthistimeitwasdifferent:anewlyfoundsofttissueneckmass was encasing the carotid artery and causing signiﬁcantpain. It appeared that her cancer had returned with a ven-geance despite the most recent monoclonal antibody basedtherapy. Mara was admitted under my care for the third timein two years and our team worked quickly to stabilize her inthe stepdown unit. ‘‘Mara is too young to die,’’ the oncologistsaid. ‘‘She is here for the best chemotherapeutic regimen,clinicaltrials,andadvancedsurgicaltechnique;wehavedoneit before, and we have to do it again.’’On a cold and stormy winter day we had our ﬁrst familymeeting. The oncologist and I gathered up all the courage totell Mara and her parents, through a Spanish translator, thatthecancerwasincurableatthisstage,andthatsigniﬁcantsideeffects of the only available chemotherapeutic regimen mightoutweigh itsadvertised 5%to10%response rate.Throughoutthe meeting, Mara held her head down and did not say aword: her cancer was causing signiﬁcant upper airway se-cretions and difﬁculty speaking. She was only comfortable insuch a head down position. Tears in her eyes, she wrote,‘‘How long do I have to live?’’ I was speechless too; she hadjust turned 21 years old.‘‘Can you make my pain go away and my breathing bet-ter?’’ she asked. I suspected airway edema and superior venacava syndrome and prescribed intravenous dexamethasoneandopiates.Nonetheless,thatnightMaralostherairwayandsufferedrespiratoryarrest.Shewasemergentlyintubatedandtakentotheintensivecareunit.Overthenextthreeweeks,shereceived mechanical ventilation, tracheotomy, and antibioticsfor ventilator-associated pneumonia. Her devoted motherstayed with her at the bedside: ‘‘I have been through this formore than two years!’’However,Mara’scancerwasmoretroublesomenow:ithadinvaded her cervical vertebrae and spine canal, her carotidbody, and vital neck blood vessels, causing signiﬁcant radi-culopathy, alternating tachycardia and bradycardia, and si-multaneous thrombosis and bleeding. Eventually she wasstabilized and transferred back to my service on a ventilatorand a patient-controlled pain pump delivering high dose in-travenous opiates.Mara did not wish for additional chemotherapy. Weepingquietly, her mother said, ‘‘I love you so much Mara and Icannot let you die—you must do chemotherapy for me!’’Many conversations between Mara, her family, our team,and the palliative care consult team followed. Mara couldn’tspeakbecauseofthetracheotomyandsecretions,soshewrote(or texted on her cell phone):‘‘WhyamIhavingthispain?ItbothersmeverymuchandIcannot go to sleep.’’‘‘Will my breathing get better? Will I be able to get off themachine?’’‘‘If there is no more treatment, can I go home?’’‘‘CanIgotothepediatricﬂoorIwasonlasttime?Iliketheirrooms and television channels better.’’We could not wean Mara off the ventilator or high doseintravenous opiates. She was not stable enough to be senthome or to the pediatric ﬂoor because of suctioning require-ments. Her cancer grew rapidly, leading to increased airwayedemaandepisodesofsentinelbleeding,andthereweresignsofspinalcordcompression.Worstofall,shebecamemoreandmore depressed and anxious as time passed. Fortunately, noadditional chemotherapy was given.I walked into her room on a quiet weekend and found herplaying with her cell phone. Her mother was at the bedside,translating. ‘‘Do you like iPhone?’’ I asked.‘‘Yes,Iamchattingwithmybestfriend,Laura,fromPuertoRico, on Facebook—I miss her, and my brothers and sisters.’’Despite rotating opiates and adding nonpharmacologicmodalities, Mara still experienced signiﬁcant breakthroughpain and anxiety requiring bolus of sedating opiates and an-xiolytics. ‘‘If I have to die, please let me die during sleep,withoutpainanddifﬁcultybreathing,’’sherequested.‘‘Itisallright to give me more medications.’’Mara’s friend Laura ﬂew in from Puerto Rico with the helpof international funds from our hospital. Those days were