原標題:當醫生自己成為癌症患者時: 宣戰與收穫(感人至深/ 中英文)
【留美學子】 的讀者文摘
仰望星空、腳踏實地
【陳屹視線】導語:
感恩【留美學子】平臺上的三位特約作者賜予本人三次機會,
讓我走進了美國醫生的世界,而且他們都不是普通的醫生,而是神經、心臟相關的外科手術專科醫生。
文章是被反反覆覆編輯出來的,連續數周,自己含著淚水品讀著他們的文字,在照片中,對話他們的靈魂!
感動於他們字裡行間,不僅浸透著學醫、從醫一路走來的艱辛,更觸摸著他們筆下展現的:
這麼艱難學醫、
這麼艱難經歷住院醫生的訓練、
更加這麼艱難的成為醫生,
當「好日子」終於降臨之時,
卻發現.......
當醫生自己成為癌症患者,
不得直面生命挑戰,
他們內心也曾出現驚慌、不安,
......
然後,
再內心的強大和毅力。
人生路上的風雲變幻,
帶給與患者同舟共濟的醫生們
重新審視世界、
審視治病救人的選擇、
審視何謂愛和生命的意義和價值!
這一切一切令人對醫生們崇高的事業,
更加肅然起敬!
謹此獻上我們的敬意、致敬與深深的鞠躬!
感恩三位作者,
感謝這些超越時空的人生告白!
(已經發表的另外兩篇文章,
【朋友相互推薦的一本美國暢銷書】
【為何美國學醫從醫如此"艱難", 醫生妻子眼中的"真實世界"】)
在此文結尾處有連結。)
本文為岑瀑嘯醫生的自敘,作者系美國佛羅裡達醫院心血管專科醫生她以自己從一個醫生變為癌症病患的親身經歷,與我們分享她在角色轉換過程中的軀體體驗和心路歷程。
她希望本文對於從事醫務工作的讀者有所啟發或幫助,也希望與非從事醫務工作的讀者由此明白,醫生也像平常人一樣,當他沒有親身經歷過一些事情的時候,他的某些看法難免有其局限性。因此,我們每個人都不妨多一些憐憫和諒解的情懷。
岑瀑嘯與她的生活伴侶趙崇尚的對話來自 【佛山電視臺】採訪時記錄。
趙崇尚:什麼是你會原諒的?
岑瀑嘯:人都會在某些時候變得脆弱。
趙崇尚:你事業上的遺憾是什麼?
岑瀑嘯: 我工作中沒有不安全感,但人生多次在事業的選擇上, 因為我缺乏自信,於是放棄了一些機會。
趙崇尚:在你生命中最遺憾的是什麼?
岑瀑嘯:沒有機會和我爸爸說「再見」。
趙崇尚:你仍在追求的目標是什麼?
岑瀑嘯:更加關心在乎愛我的人,
趙崇尚:你的動力來自哪裡?
岑瀑嘯:去履行我的任務,實現 」我再給予「的目標。
趙崇尚:你最珍惜的快樂是什麼?
岑瀑嘯:讓愛我的人快樂。
沒有來得及與父親道別,父親去世後的三年,除了繁忙的工作之外,作者就是伏案疾書,寫下對生命的熱愛與思索。
2007年夏天,我被確診罹患卵巢癌盆腔轉移,後來歷經幾年,經手術及化療最終治癒。本文為首次將自己作為病人的經歷分享給大家。
首先我感恩自己生於現代醫學發達的時代,能及早發現癌症並獲得有效的治療且愈後至今良好。我展望未來的時候,看到更加早期發現癌症以及增加個體化地治療的必要性,在進一步提升治癒率的同時儘量減少對病人生活品質的損害。我自認一向身體強壯,首次親身經歷現代醫學的神奇;同時體會到疾病和治療帶來的痛苦。生病是一個孤獨的過程,無論有多少愛你的人為你打氣。做了那麼多年的醫生,儘管我常常提醒自己要將心比心,易地而思,還是不及從自己患病所得的體驗深刻。
當一個疾病不是像感冒那樣時間較短,患者的鬥志和自信會有起伏。而在與家人及醫療人員相處的過程中,因為希望做一個容易相處的人,病人也會出奇地擔任了一部份照顧人的角色。當我忍受一波又一波的噁心和嘔吐、腹瀉、肚子絞痛、發高燒的寒戰、退燒時候的大汗等等,難免會為自己的無能和身體的脆弱給人帶來的不便感到內疚。
當我剛得悉自己罹患癌症時,我的頭腦還處於往昔的「醫生狀態」,反而沒有那種我所觀察到的病人驚愕、恐懼或傷心。所感受的只是希望可以多了解一點這類型的癌症,心裡想著哪一種腫瘤雜誌我會在見完醫生後去搜索,甚至覺得自己的臨床和教學方面每星期、每月的計劃不會中止或變動。
可能是這種測量自己的影像、病理報告,搜索醫學文獻,去研究自己的疾病,是一種隔絕震驚的形式;它又剛好屬於我的本行最熟悉的動作和行事,所以突然聽到噩耗時我就不由自主地條件反射似的,將自己的思維轉作一種學習和研究的形式。
1995年在紐約的 Lenox Hill 醫院 做內科住院醫生時
此過程讓我理解了為什麼一些病人在心血管病非常嚴重時,鍥而不捨地鑽牛角尖,要求我解答許多我認為對疾病大方向的治療無關痛癢的細節;有的病人會經常在每次複診前在網上列印很多資料,捅來和我討論,「聽我的意見」,其實只是令他的心得到一些安慰;而我經常覺得這種執著是浪費時間,我難以理解這種不懂得抓重點的行為。等到自己也做同樣的事時我就明白,這種好像「糊塗」的舉措是為了努力一種假像,仿佛自己還有能力掌控大局,以免陷於恐懼。這個假像就包含不斷學習、研究、尋找答案的形式。
1998年 在 Temple 大學醫院
我的同事非常體貼,知道了消息馬上開始幫我照顧我的所有病人,讓我專心休息。我任職所在的心臟科在我接受治療不能上班的過程中,繼續發工資給我。但我還是答稱不要緊,以為我是不可能病到不能工作的地步。即使不能維持原有工作量,或可減少工作量、病人的數量,或可在幕後通過看病人的結果,和電話上繼續免費解答他們的疑難。而後者(電話諮詢)已是每個醫生的日常事務。我覺得自己還可繼續做。
如此無視問題的嚴重性,堅持工作,其實也是不願面對殘酷現實的一個反應。
做了手術我才躺在床上完成了自己的角色轉換--我不再是指導這個疾病的治療的醫生,而是一個身體上有病的人。在此之前每次我和我的醫生探討病情,我站在旁邊就像是他的同事,一起討論一個第三者的病理報告和身體影像的結果,看上去好像是一個最鎮靜、最合作的病人,其實也是一個最否認現實的人。
作為病人,我也經歷過標準化醫療手段帶來的不快。例如當我化療後白細胞減少,不同的感染都少不了新一輪的X光胸片,抽血做細菌、真菌和病毒的培養,而且多是正值我難以有足夠睡眠的情況(因腸胃不適的和高燒、發冷等而致),還因護士定時檢測我的體溫,發現我體溫升高便亮燈為我抽血,用床或輪椅把我帶去放射科;如我太軟弱無力則由放射科工作人員前來為我照胸片,這些都使我本已軟弱如麵條的身體備受折騰。
儘管我心裡明白這些都是重要的步驟,是醫生不希望失去捕捉到細菌、病毒和真菌的機會。只有捕捉到這些病原體資料,他們才可以有的放矢地調整抗病毒和抗菌的藥物。
當我手術後傷口的疼痛令我受皮肉之苦時,也感恩能有一個裝有微型電腦的自行控制的止痛靜脈注射器(Patient Control Analgesia,PCA)。它其實不是新技術,但此次我切身體會到給病人一個自我控制的機會是何等重要。病人無須等到疼痛難忍時才按鈴召喚護士,為己作止痛注射。因為無論護士來得多快,總有一段時間讓病人繼續忍受痛苦。何況當時未必有護士可以即時自其正在執勤的地方脫身前來。
這種自我掌握命運的感覺很寶貴,自然PCA的預設止痛藥劑量有一定上限,病人不能多次按掣。因為不少止痛劑是嗎啡或其衍生物,劑量太大可能會抑制呼吸。
我另一個感受就是,醫學固然並非精確的科學,通常我們對預後的估計和一個治療手段效果的估計,只是有一個數字附帶上去的估計,也就是一個統計上的可能性。病人經常(差不多是常規性)的問題是,這個病嚴重不嚴重,或這個治療有無副作用,每天聽到很多次這種問題,有時我的第一反應是:我很難給你「是」或「否」的答案:有百分之幾的可能會達到預期效果,成功的定義是什麼;這種副作用或那種並發的機率;至於嚴重與否,取決於你對疾病的認識和我們治療過程中效果的動態評定。
這些說法確實很科學,但同時也是令患者不安的答案。當然,我看來嚴謹的回答是一個職業化的表現,不是光說病人想聽的;但當自己是病人時我就突然覺得,這些數字和計算之後的回答,對於身患重病、面對重大醫療選擇的病人來說,蘊含著一種令人失望的冷漠。
誠然,醫生主要職責是治病救人,盡力使之康復。能夠安撫其心情,解除他的思想包袱當然很好,卻未必可以做到。於是,病人難免因得不到安慰而沮喪,通常他不會因為認識到該答案的客觀性而對答話的醫生有所體諒,可能心裡認為對方僅僅以事論事,一味「公事公辦」,做交易一般。
這回我成了病人才真切地明白:醫療的過程重在客觀地評定患者的病況並給予科學性的治療,這樣,有時情感上的安慰是難以兼顧的。或者可以說會是魚與熊掌二者不可兼得。身為醫生應時刻謹記這種局限性,有時變身為一個心理輔導人員給患者以溫柔的心靈上的安撫。
所謂「醫者父母心」,「情」豈非題中應有之義?
過去我認為病人照CT (電腦斷層掃描) 是很簡易的一個過程,無非是在靜脈上注入攝影劑,病人躺在CT機上照一照罷了(我覺得唯一需要注意的是病人受到的放射劑量)。這回我自己做CT,才感受到靜脈注射特別是口服造影劑時是難受的。吞服跟鋇餐相似的流劑絕非樂事。此舉旨在把造影劑輸入胃腸道,以便使CT所提供的資訊更具臨床意義。儘管「餐單」包括草莓味、香蕉味或蘋果味(我全都嘗試過),即使口味調製得與水果原味再如何相近,當我意識到此非食物,要一口一口吞下去,直至把一大瓶吃完,還是挺不容易的。再者,躺在CT機那又硬又冷的床上時,當我不知道此次造影結果會是如何,也就是我的癌症是否已經得到控制,有無復發,等等,為此而忐忑不安,我就會頓時覺得這個機器和技術員在話筒中告訴我的,似乎隱藏著一些我所不曉得的東西,處於一個戰壕我的敵對方(就仿佛機器是我的對手一樣)。
由此我首次感受到,以往聽到的病人所云「你們醫生」之類的說法是他感到沒有一個人能看到他的痛楚或恐慌,當人覺得無助時將世界看成非黑即白,非我即敵的思維,份屬自然。
在我的人生經歷中第一次覺得我的生命由兩股力量牽拉,一股是我的疾病,另一股是努力將這疾病去除的那一隊人。而我似乎處於完全被動、無能為力的狀態。因生病令我更謙虛。以往儘管我對病人及家屬的建議純屬建議,但他們聽起來可能會覺得(或我講話時實質上)已經含有一種傲慢,起碼是「自以為是」。我是假設自己知道什麼是對他們最有利的,有時病人和家屬確實不知道何種選擇於全局最好,而只知不同的選擇可能帶來短期的好處和壞處。事實上,他們往往需要一段(長短不一的)時間去探討,或者此探討的形式令醫者覺得他們似乎對你不信任,老是重重複複的質問,而身為醫務人員在有限的時間表之下,確實會覺得這種來來去去的質疑是病人的不友善,或其矇昧無知的表現;醫者會認為自己已經解說得很清楚,事實就是事實,而醫學有時也並非那麼複雜深奧,為何他們怎麼也不明白,或者毫無必要地將一件相對簡單的事情複雜化?
我現在才體會到,當一個病人或家屬覺得他在疾病治療過程中沒有參與權的話,那種無助就會令其對治療疾病的這隊人都難以視為自己的團隊,他覺得自己不屬於任何力量,而只是一個被動的成分。要使之感到他是在醫護人員這一隊裡一起並肩作戰,這不是一次門診15分鐘的見面或一次查房便可達到的。成了病人的我首次體認到上述現象的存在。
雖然我以前也對病人在我接受培訓時的作用心存感激,現在更加深了這種感謝之忱。因為我每次見到新的醫生(手術醫生或新參與會診的各科醫生),或入院見新的主管醫生等等,我作為病人提供的自我病史基本上就如以往工作時我對著話筒直接口述,再由電腦自行打出來的一份病史那般精確完整,比如發病過程、診療方法、已接受過的治療和效果等,我基本上像一個醫生跟另一醫生說話那樣言簡意賅。但當有正在受訓練的住院醫生來問其主管醫生先前病史時,他們一次又一次問我一些其他的症狀,有無喉嚨痛、抽筋等,這些我覺得與我現在的病毫不相干的、或我個人認為對我毫無幫助的問題,我都要一次次地回答,於是我意識到每一代醫生訓練的過程,其實就是無數病人耐心地為之提供協助的一個過程;也就是說,醫生受訓時病人不光是接受其服務,而且提供了一個教學的機會,即也提供了服務。換句話說,我感受到一個病人無形中肩負的所謂「教學任務」其實也很繁重。
我兩次的卵巢癌手術都是在我身為腫瘤專科醫生的妹妹所工作的癌症中心做的。我住在佛羅裡達奧蘭多,妹妹在德州休斯頓。我之所以選擇到那裡,首先是由於我信任妹妹的專業水準,而她為我找的一位手術醫生是她最信任的;其次是我希望在另一個地方住院和治療(包括術後的恢復),可以令我得到更好的休息。
因為我在佛羅裡達醫院任職多年,認識的人很多,我在確診和停止工作後,很快醫院裡不少醫務人員都得到消息,有些病人知道被轉去我的同事那裡繼續治療,他們都紛紛熱情致意,短時間內我收到600多份問候卡。如果我留在本地,將會有許多熱心的同事和朋友前來探訪,我或許不能得到更好的休息。而且我也不希望讓同事見到治療的過程。
在妹妹的照顧下,手術和術後恢復都非常順利,當然因為離開自己的居住地和自己熟悉的醫院,到另一個地方診治(作為一個醫生以往的小病、小檢查都是自己的同事處理,不會有陌生的感覺),所以我第一次體驗到:一個病人在自己最憂心時,把重要的決定權和信任都放在自己素未謀面的陌生人手上那種感覺。
雖然在美國這個專業管理比較嚴格的國家,醫生和醫院的品質都不會相差得太遠;但信賴首次見面的陌生人為自己開刀,又相信同樣是首次見面的麻醉師(會將自己手術中和術後的痛苦降到最低限度),等等,這些信任是我以病人之身,第一次賦予。而且我是臨床上獨當一面多年的人,面臨需要將自己的生命交給自己不熟悉的同行,有一種感到突而其來的不安。
有句半玩笑的話說,「好的臨床判斷哪裡來的呢?是經驗來的,但從哪裡得到經驗呢?是從壞的臨床判斷。」也就是通過做錯決定吸取教訓而得的經驗,是形成好的臨床判斷的基礎。正因為醫生知道這個錯誤的決定對病人帶來的是什麼後果,所以我作為病人就很擔心這個現實。
通過術後的康復和每一輪化療身體為下輪化療作的準備,我也體會到身體本身的健康素質之重要性。因為我從小經過遊泳訓練,在父親的指導和鼓勵下我在中學和大學都參加遊泳隊,參加過省級遊泳比賽,體質潛力較好,術後恢復期對化療所引起的對身體的負面影響消除較快。我病後格外感激父母對我小時強調鍛鍊身體之重要性,不僅要我讀好書,專心學到知識和掌握學習方法,還要攢足身體健康的本錢,以便終身受用。這是多麼的有遠見。
成了病人我第一次切身體會到,儘管醫學經過多年發展取得長足進步,但畢竟還是年輕的科學,有許多不足之處。即使基於最好的初衷和動機,醫務人員所做的決定和行為都未必盡如人意,甚至可能出現難以預料的不良後果。我第一次體會此種落在自己身上的可能性,果真如此,則不再是科學和客觀地分析、量化方面的或然率問題,它對我本人不是百分之多少,而是殘酷的百分之百。奇怪的是,一個人經歷疾病時會更加意識到身體內的一股生命力。
平時身體無恙是一個謙虛的無言的幫手,幫我們實現腦袋中之所想。但當我病時就會格外分明地覺得自己是一個活著的生物,不僅是一個意識。例如我化療期間,有時一早起來看到鏡子中一個很消瘦的人,眼圈黑了、光頭、面容蒼白甚至有點近似灰黃的一個人在回望我,有點像《紅樓夢》中的劉姥姥,頭一次在賈寶玉所居的怡紅院中照鏡的感覺。在我身體承受手術後的疼痛和面對化療期間的副作用時,由於本來任職醫生,軀殼內仍存的「醫生」完全明白這現實的必然性;但作為「病人」我就總是「不服氣」,覺得自己被一個失去正常功能的身體束縛住。但在吃驚的同時我強烈地意識到,這個軀殼裡面是一個很強的生命,在繼續其未完成的各種運作;也就是說雖處罹患惡疾、生命最脆弱時,我反而第一次看到生命的力量,那是令我非常佩服的力量。
作者1998年攝於美國 Temple University Hospital
而正是因為意識到生命的強大,當我接受第二次手術時,躺在床上被推進手術室,在走廊不知轉了幾個圈,我望著天花板一格一格、燈一盞一盞地飛過,到手術室內只是看到很亮的無影燈,刺著雙眼,那時第一次體會到「放手」的意思,把所有的控制權、主動權放出來,交了出去的那種感覺。當一個人身患可能致命的疾病如癌症,且需經多次治療,對其接受治療的日子會有兩種相互矛盾的看法:一是這段時間乃一種獎勵,因為如果不是接受治療,這些日子可能不存在;但另一方面,這也意味著失去部份生命:此期間不能如常地生活,不能做自己以為有意義的、可以發揮主觀能動性的事,而是只能被動地接受療程。
我想,這種感覺不僅是癌症病人,可能是所有慢性病患者都會有的,並且需要學會去接受的。許多醫療手段往往在救死扶傷的同時,增加了傷患者的痛苦,是把他今天的生活品質去換取一個承諾--那就是希望可以活久一點,以及跨過這個困難之後的日子品質會比不接受治療為佳。
這就是我覺得現代醫學,或單純說是醫學對疾病治療所造成的一種具兩面性的效果。而有時為了在心理上接受這個矛盾性,病人會埋頭學習有關自己疾病的知識,學習的細節可能已經到了妨礙他理解全局的程度。以往我會認為他們是過分執著,會反覆告之曰:你無需知道更多細節,或這些細節不重要,讓我替你操心即可,你最好自己儘可能設法活得好一點、瀟灑一點;但現在我認識到,我這麼說或許是需要的,另一方面也不能期待我的話會改變他們的心情--因為他們力求掌握更多的有關資訊及治療方式是很自然的。
我的化療本來是6個療程,但後來變為7個,因為其中一個療程中有種藥物在靜脈滴注射時,突然導致我發生嚴重低血壓和心律減慢,當時迅即暈了過去。記得那瞬間腦海中閃過「我要死了」的感覺。幸好醫務人員行動快,搶救及時,尚無大礙。為此改變了後面一個療程的成分,增加了一個療程。
自從這次血壓和心跳低到幾乎喪命(那是在我自己的醫院進行化療的),我每次走過診療室見到搶救車(Crash Cart)都有所感觸,覺得它離我很近。搶救車Crash Cart是每個診所必備的一種鐵皮四輪車,高約及腰,寬約一臂,設置許多鐵皮抽屜,分別裝著不同的急救藥、注射器和氣管插管的器材等,當病人突然出現生命體徵的崩塌,可立即推到病人身邊搶救。
以往我當醫生時,它在我眼中像是一張凳子或桌子,不用時和家私沒有什麼兩樣;但當我成了病人,它的存在就使我感到生命的脆弱,因為可能要在我身上用到這些器械。可見一個醫生和一個病人,對醫院或診所中的同一設備是有不同的觀察角度的,它所起的作用可有天壤之別。醫務人員不用它時只不過放在那裡,是房間裡諸多物品和設備其中的一個;但就病人而言,特別是用過它的那些病人見到它,雖未必心有餘悸,起碼會意識到自己身體惡化的可能性是很真實的,看得見摸得著的。
我生病後的另一收穫就是,以往當病人面對壞消息時一時感情上接受不了,我可能會握住他的手說,我明白你的感受;但我病後不再這樣說,改為:雖然我不可能、不可以或未做到完全知道你現在的感受,但會儘量去理解你的感受。也就是說,我在溫言撫慰乍聞惡耗的病人時,不再自以為是地認定自己明白別人怎麼想,情感的波動有多大。
以上零碎地談了我作為病人的一些感受。這也是我首次在文章中憶述自己罹患卵巢癌,經過兩次手術及7輪化療期間的心路歷程,和我學到從病人的角度去看疾病心得。我希望本文對於從事醫務工作的讀者有所啟發或幫助,也希望與非從事醫務工作的讀者由此明白,醫生也像平常人一樣,當他沒有親身經歷過一些事情的時候,他的某些看法難免有其局限性。因此,我們每個人都不妨多一些憐憫和諒解的情懷。
人生在世,不乏三災六難五勞七傷,其中生病尤其尋常,其間特別需要別人的關懷,包括精神上的安撫和物質上的支持。後者往往受到經濟條件的限制,而前者卻只需一顆善心。
WHAT MY CANCER TAUGHT ME: OVERCOMING AND LEARNING FROM OVARIAN CANCER
Dr. Puxiao Cen shared her impressive story of ovarian cancer diagnosis, treatment and recovery with Baylor University Medical Center's quarterly magazine, Proceedings. Dr. Cen explains how her cancer diagnosis helped her to better understand her patients and grow as a physician. Read her story, originally featured in volume 28, number 4 of the Baylor Health Care System’s prestigious peer-reviewed journal, below.
What My Cancer Taught Me
In the summer of 2007, I was diagnosed with stage II ovarian cancer with metastatic lesions on the bladder. After two surgeries and seven rounds of chemotherapy, I am in remission and have undergone transformational changes from the experience. Fortunately, we live in a time of advanced medical development that allowed for early detection and effective treatment of the cancer—for which I will be eternally grateful. While this has given me a very good prognosis, it did not make the process any easier, despite the unflagging support of family and friends. I learned that no matter how much you are loved, being ill is a lonely journey.
The vast majority of illnesses most people experience are acute in onset, self-limiting, and relatively short-lived, like the common cold. However, with a chronic illness like cancer, where there is a long, drawn out, constant fight against the disease, individuals experience fluctuations of confidence and the will to fight. Not only that, but due to the protracted nature of the disease, they inevitably harbor feelings of guilt for being a burden to loved ones. Consequently, they try to be a 「good patient」 and not tell anyone, caregivers and doctors alike, about the physical and mental suffering they experience.
Maintaining Control
When I first learned of the diagnosis, I approached it from the role of a physician, which made it extremely difficult to experience the fear or sadness often observed in patients with similarly serious verdicts. When I read the pathology report, I was solely focused on the hard data about the clear cell carcinoma that I was found to have. My clinical mindset led me to spend a vast amount of time online learning about the latest research, just like I do for my medical practice. For all intents and purposes, I felt that my daily routine was not going to be disturbed by the cancer.
Looking back, I realize this thorough studying of my computed tomography (CT) and positron emission tomography (PET) images, pathology reports, and literature research was a way for me to insulate myself from the shock of the bad news. Because the mind spends much of its time trying to defy change, seeking an unstressed state, I fell back to the comfort of doing what I know well. By reflexively studying the science behind the diagnosis, I was helping to shield myself from the emotional impact.
This experience helped me better understand why some patients spend a tremendous amount of time and energy studying even the most minute details of each differential diagnosis. They even print out the information from their online search and bring it to the office visit to discuss with me. In the past, sometimes I was confused by such behavior, which I considered a refusal to accept the medical 「truth.」 I would say something like, 「Relax; it is not as complicated as you think,」 or 「Don't worry; let me take care of you.」 My patients' reactions would even make me feel untrusted. Of course, only after behaving the same way, obsessed about information on my own illness, did I understand my patients' insistence on knowing 「everything」 as a way to gain a sense of control.
The need to maintain control over one's life and pretend that nothing has changed can be pervasive. Even when my colleagues were kind enough to take over my workload so I could take time off, I continued to use electronic medical records to follow many of my patients. I simply was not able to let go of my routine. By ignoring the reality and the upcoming extended period of hiatus for the treatment of a serious illness, I was using work as a way to feed my denial.
Prior to my cancer surgery, I would stand next to my oncologists during my appointments, and we would look at my images and discuss my case as if we were talking about a mutual patient of ours. By pretending to be the doctor of someone else, I would appear to be the most compliant and calm patient. It was only in the postoperative period after the undeniable trauma of the surgery that I was able to transition from being a physician to being a patient. It finally occurred to me that I was not the attending physician anymore; I was the one who had cancer and was receiving treatment.
Patient Inconveniences
As a patient, I experienced the inconvenience of 「medical routines」 firsthand. While I understand the necessity of chest x-rays, blood tests, and urine cultures when I had a fever, especially in the context of postchemotherapy neutropenia, the process struck me as irritatingly intrusive, especially when it happened in the middle of the night. After all, that was when I felt weak with fever, chills, abdominal pain, diarrhea, dry mouth, and headache.
All the testing that goes along with cancer can be tiresome. Getting a CT scan with intravenous and oral contrast is not an easy feat. Each time I received intravenous contrast, I would have intense nausea and vomiting. Even the oral contrast required drinking about half a gallon of thick liquid that is completely unpalatable even though it tastes like strawberry, banana, apple, or grapes. Knowing that the taste is chemical made each gulp a small challenge.
Some of the testing can be isolating in both a literal and figurative sense. Lying in the bed of the PET or CT scanner, I felt as if the automatic instructions from the machine, and even the voice from the technician outside of the room, were alien and distant. The feeling of isolation can easily cause a person to regress to a more vulnerable state.
One island in the storm was patient-controlled analgesia. I was grateful for the chance to control the dose and timing of the medicine for my pain. I understand now that the potential of pain is a big part of a patient's suffering. When you give patients the chance to plan and implement their own pain control, the sense of relief is priceless.
Medicine And Statistics
Prior to my cancer, whenever I used statistics as a part of shared decision-making with patients, I expected them to understand that medicine is a science, albeit an imprecise one at times. However, many patients wanted absolute, yes-or-no–type answers. It is not uncommon for patients to regard statistics as irrelevant. In the past I considered such patient behavior a result of a lack of scientific background. Now, I feel the cold objectivity and the businesslike nature of statistics.
Surely, a physician should endeavor to be as objective as possible, while remaining tactful in the delivery of unfavorable information. This objective yet tactful stance can be viewed by patients as distant and detached. As a physician, when I heard patients or their family use terms such as 「you doctors,」 I would feel disparaged and unappreciated. Now I know that patients who feel helpless and afraid may see a world divided. When I was suffering, I felt alone, caught in the middle of the evil disease and people who were trying to get rid of it. I was a passive, powerless entity in the process. Such a mindset can cause one to become defensive and critical of others. When one feels voiceless in the decision process, it is hard to view the care team as on one's side.
Before the cancer, my body was a quiet supporter of my ambition. Ironically, it was in sickness that I felt the strength inside me. When I looked in the mirror and saw a thin, pale, bald-headed person looking back at me, I could feel the strong vitality inside my head. I alternated between feeling trapped inside my broken body and the resolve of seeing that caring for this frail physical being was an exercise to get my mind in shape. What a contrast in health and spirit: a worn-out shell versus a sharp consciousness!
There is a duality of thought when one considers the time one spends in the sick bed: the age-old quantity versus quality conundrum. On one hand, it is time one would not otherwise have if it were not for modern medicine. On the other hand, it is time lost because the quality of the time is diminished by treatment that renders one sick and weak, preventing the enjoyment of life. One sacrifices the quality of today in the hopes of having a better future.
Other Lessons
Cancer taught me several lessons as I transitioned from the role of a doctor to patient. One lesson was an appreciation for the 「teaching burden」 that patients have to shoulder. Residents came to my room and took my medical history, going over a lengthy review of systems, performing a thorough physical exam. We should all be thankful to patients for lending themselves to the training of our new physicians.
Another lesson came from the opening of oneself to total strangers. During my cancer treatment, as I met the flow of new physicians, such as an anesthesiologist before the surgery, I felt a distinct recoil in my gut. This thought remains with me when I meet a patient in the emergency room or hospital ward for the first time. I cannot help but wonder how they feel when I, a heretofore unknown entity, propose an invasive procedure such as cardiac catheterization. Do they feel the same uncertainty I felt as a patient? It certainly gives one pause.
Even basic, everyday medical equipment took on new meaning for me after cancer. During one of my chemotherapy infusions, I had sudden hypotension and bradycardia, to the point that I passed out. When I came to, I saw a crash cart next to me and was struck with fear. Now, whenever I see one, I am emotionally transported back to that moment and feel a vague but real threat emanating from it. Perhaps to patients—not just children, but also adults—who have experienced emergencies and life-threatening conditions, many pieces of equipment regularly used by doctors and nurses could evoke a similar emotional response of fear, dread, or anxiety.
My journey through cancer has given me a new appreciation for the nuanced perspective a patient requires. In the past I would sometimes hold my patients' hands and say, 「I understand how you feel.」 Now I say, 「Although it is impossible for me to know exactly how you feel, I will try my best to understand you and see things from your side.」
These are the insights I have gained from being a patient. Doctors and patients are alike. Life experiences help us to see other people's points of view. The success of any treatment relies as much on the kindness and forgiveness we show to each other as it does on medical expertise and advancements. The latter is often limited by resources, whereas the former requires only a good heart.
Download alternative formats of this article, inlcuding PDF and e-reader versions at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4569245/ and download current or past issues of "Proceedings" here:http://www.baylorhealth.edu/Research/Proceedings/CurrentIssue/Pages/default.aspx.
作者岑瀑嘯女士系美國佛羅裡達醫院心血管專科醫生
照片由作者提供。
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【陳屹視線】 美國教育30年心經 (百篇原創)
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