美国《临床肿瘤杂志》：癌症期间的关爱

《临床肿瘤杂志》2017年8月16日在线先发

“肿瘤人文”栏目

作为一位从业40多年的肿瘤科医生，我常常想知道，是什么驱使病人满怀希望和向死而生的决心与看似无望的疾病抗争，这么多年后，我发现是各种形式的爱，爱作为一种令人信服的力量，帮助病人战胜癌症诊断所带来的各种不确定性。当然，爱不能征服一切——这是我们太过明白的事实——但爱能让人在不安和难以预料的时刻感到慰籍、激励病人勇敢直面可怕的疾病。一些小说中多愁善感的故事情节与我们病人所有具有的勇气、不屈不挠的精神相比就相形见绌了。诺贝尔奖得主加夫列尔·加西亚·马尔克斯在他的《霍乱时期的爱情》[1]中的描述，显现了主人公一生中困难时期获得的忠贞而持久的爱的力量，在我行将结束职业生涯之时，我更加认识到，众多病人不屈不挠的背后是爱，这种爱很像《霍乱时期的爱情》小说中描述的那样忠贞而持久。

“疾病的隐喻”是苏珊·桑塔格[2]的一系列论文中所推崇的一个概念，其中一段对我感触很深:“出生的每个人在健康的王国和疾病的王国里拥有双重身份，疾病是生命的另一面——黑夜、是一个更沉重的身份，尽管我们更喜欢用健康这本护照，但我们每个人早晚不得不成为另一领地疾病王国的身份，至少一段时间里会是这样。”作为一个孤单的夜行客摸索行进的方向是非常艰难的。爱，以其多种表现形式，不仅为病人，而且还为家人聊以慰籍、使人祥和。作为肿瘤科医生，我们每天都在见证癌症时代爱的力量。

W.G.诊断出转移性睾丸癌时23岁，他说左睾丸疼，妻子坚持让他询医就诊，但在确诊的时候，瘤细胞已蔓延到腹膜后淋巴结。他接受了博来霉素、依托泊苷和顺铂化疗，并取得了血清学的完全缓解，化疗后腹膜后淋巴结清扫证实为畸胎瘤。她的妻子看来远比他更关心此事，与他寸步不离，这也给了他对化疗和手术痛苦的忍耐力。不幸的是，7年后，出现了无症状性的晚期复发，最初只是出现了血清甲胎蛋白水平的升高。在随后的7年里，他忍受了频繁的肿瘤手术切除，每次都造成身体和心理上的更多痛苦。几次化疗使得甲胎蛋白水平短暂性下降。妻子总是陪伴着他，亲密无间、爱意浓浓。最后，到达临界点，我不得不告诉他，进一步治疗产生的危害将会远远大于益处。即使在身体状况最好的时候，W.G.也不热衷于进行毒性越来越强的治疗，但讨论完无效治疗和有害治疗后，他询问了各种类型的治疗，无论毒副反应是什么。他的理由是，即使该治疗仅可以使他与妻子多呆上一天，他都愿意忍受更多的毒性。遗憾的是，我们已经真的用尽了所有选项。此后不久，在病榻旁守候的妻子的不断安抚中，他于自己家中溘然长逝。

E.S诊断出转移性睾丸癌时16岁，按照儿科肿瘤治疗方案，他接受了博来霉素、依托泊苷和顺铂治疗，取得了短暂的部分缓解之后又迅速恶化，随后转诊到印第安纳大学进行补救性化疗。他适合进行大剂量化疗+外周血干细胞移植，最高有20%的治愈概率，在我看来，这是唯一的根治性治疗选项。他那受过高等教育的父母陪同他首次门诊就诊后，决定带他去墨西哥接受替代疗法，从而失去了任何治愈的机会。他的父母深深地爱着E.S.，就像W.G.深爱他的妻子。我们肿瘤医生在数据、信息和循证医学的基础上，尽可能提供明智的专业建议和安慰，但最终的决定权不在医生，即使有最好的证据支持或反对某一特定治疗，也不可以抗衡以许多不同形式表现出的爱的力量。

L.P.诊断出患有IIIB期(T4N0)肺腺癌时32岁，她从不吸烟，10岁时患儿童期霍奇金病而接受过斗篷野放疗，肺腺癌可能就是放疗所致。由于分期剖腹手术的术后并发症，她的左侧膈神经受损，导致单侧膈肌抬高。随后出现的肺癌在对侧右肺。在诊断时，她接受了顺铂和吉西他滨化疗，疗效稳定；进展后，又接受了多西紫杉醇的二线化疗。随后被转诊到印第安纳大学，由我们的胸外科医生进行评估，胸外科医生说这将是一次高风险、低收益的切除手术，并告知她IIIB期肺癌再加上左侧膈神经麻痹伴一侧膈肌抬高，病情复杂，这意味着她将面临呼吸机依赖的极大风险，并且术后死亡概率真的很高。

她看着他的眼睛，说她有两个年幼的孩子，如果有任何有意义的生存机会，她愿意冒这个险。正如预测的那样，她靠呼吸机支撑了两周，但是后来完全康复了。两年后，在一次例行就诊中，她眼含热泪，讲到她从未想过会活着来庆祝这一天时，我哽咽了，她的两个孩子现在已经从幼儿园毕业。15年后她还活着，并且仍能与丈夫、孩子们一起在家庭的每一个里程碑中发现快乐，在这段时间里，她经历了一次转移性肺癌的开颅手术以及一侧全肺切除术，后续的系统性治疗对她没有任何效果。去年，由于同时患有肾细胞癌和肺腺癌肾转移，她接受了腹腔镜下肾切除术。她对生活和家庭的爱使她能够以优雅从容和顽强勇气去继续抗争。可惜的是，当我写这些话时，她已经没有了进一步的系统治疗或手术治疗的选择；就在被诊断为“无法手术”IIIB期肺癌的15年之后，她最近被安排到了临终关怀院。

在医学科学和医学实践中常常会有戏剧性的变化，一个典型临床诊疗日的杂乱纷争往往会损害我们传统的医患关系，尽管面对杂乱纷争，我们还是要学会谦卑，并且不断受到我们的病人的鼓舞。关于医学事实，我们可以指导我们的学生、住院医生甚或同级医生，但那种善于表达共情和同情的能力，同掌握错综复杂的临床路径知识一样至关重要。我们的病人当然应该得到我们的知识和经验，但是如果没有爱心来引导他们做决定，我们能做的也就仅限于此了。为了培养和理解那些让我们的病人勇于面对绝症的因素，我们需要更好地理解癌症时期的关爱。

《壹篇》孙莉

ART OF ONCOLOGY

As a clinical oncologist for over 40 years, I have often wondered about the factors that drive patients to battle seemingly insurmountable odds with hope and determination. After all these years, I turn to love, in all its many forms, as a compelling force helping our patients combat the uncertainties associated with a cancer diagnosis. Love cannot conquer all—that we know only too well—but it can provide comfort in troubling and unpredictable times, and propel our patients ever forward against the terrible disease they face. The maudlin sentimentality of some works of fiction pales in comparison with the courage and resilience that characterize our patients. As I move toward the end of my career, I more fully realize that it is love that lies behind the resilience of so many of our patients, much like Noble laureate Gabriel Garcia Marquez described in his novel Love in the Time of Cholera, in which he demonstrated the power of devotion and enduring love during difficult times over the lifetime of his protagonists.

Illness as metaphor was a concept espoused in a series of essays by Susan Sontag. A paragraph from her work is very moving to me: “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”1 It is difficult to navigate that night journey as a single passenger. Love, in its many manifestations, helps provide solace and a sense of peace, not just for patients, but also family members. We bear daily witness, as oncologists, to the power of love in the time of cancer.

W.G. was 23 years old when he was diagnosed with metastatic testis cancer. After complaining of pain in his left testis, his wife insisted he seek medical care, but by the time of the diagnosis, his disease had spread to the retroperitoneal nodes. He was treated with bleomycin, etoposide, and cisplatin, and achieved a serological complete remission. A postchemotherapy retroperitoneal lymph node dissection revealed teratoma. His tolerance of chemotherapy and surgery was aided by the constant presence of his wife, who appeared far more concerned than W.G. Unfortunately, 7 years later, he had an asymptomatic late relapse manifested initially by an elevation of his serum α-fetoprotein level. During the ensuing 7 years, he endured frequent attempts at surgical extirpation, with each operation causing more physical and emotional distress. Several chemotherapy regimens produced temporary reductions in his α-fetoprotein level. His wife was always there for him in a very close and loving relationship. Finally, he reached a point where I had to tell him that further treatment would produce far more harm than benefit. W.G. was never enthusiastic about undergoing increasingly toxic treatments at the best of times. However, after the discussion regarding futile and harmful treatment, he asked about any type of therapy, no matter the adverse effects. His rationale was that even if it could provide one more day to be with his wife, he was willing to endure further toxicity. Sadly, we had truly exhausted all options. Shortly thereafter, he died at home with his wife as his constant comfort at his bedside.

E.S. was 16 years old when he was diagnosed with metastatic testicular cancer. He was treated with bleomycin, etoposide, and cisplatin on a pediatric oncology protocol and achieved a brief partial remission followed by rapid progression. He was then referred to Indiana University for salvage chemotherapy. He was a candidate for high-dose chemotherapy with peripheral blood stem cell transplantation. His probability for cure was, at best, 20% and, in my opinion, this was his only curative option. His college-educated parents accompanied him for his initial outpatient appointment and decided to take him to Mexico for alternative therapy, thereby eliminating any chance for cure. His parents loved E.S. just as deeply as W.G. loved his wife. We oncologists try to provide wise counsel and comfort on the basis of data, information, and evidence-based medicine. Ultimate decisions cannot be mandated, however, and even the best evidence for or against a particular treatment may not stand up to the power of love in its many varied expressions.

L.P. was 32 years old when she was diagnosed with stage IIIB (T4N0) adenocarcinoma of the lung. She was a never-smoker and her disease presumably was the result of mantle radiotherapy she received at age 10 years for childhood Hodgkin disease. She sustained injury to her left phrenic nerve, resulting in an elevated hemidiaphragm as a postoperative complication of her staging laparotomy. Her subsequent lung cancer was in the opposite right lung. She was treated at the time of diagnosis with cisplatin and gemcitabine, with stable disease; upon progression, she received docetaxel as second-line chemotherapy. She was subsequently referred to Indiana University and evaluated by our thoracic surgeon. He described a resection that would be high risk and low yield. She was informed that her complicated condition of stage IIIB lung cancer coupled with a paralyzed left phrenic nerve with elevated hemidiaphragm meant she was at significant risk of becoming ventilator dependent and that there was a real probability of postoperative mortality.

She looked him in the eye and stated that she had two young children and, if there was any chance for meaningful survival, she was willing to take the risk. As predicted, she required ventilator support for 2 weeks, but fully recovered. Two years later, during a routine office visit, she had tears in her eyes and I had a lump in my throat as she declared she never thought she would be alive to celebrate this day, as both of her children had now graduated from kindergarten. She is still alive 15 years later and still finds joy in family milestones with her husband and children. Over this time, she has undergone a craniotomy for resection of metastatic lung cancer as well as a completion pneumonectomy. She has not responded to any subsequent systemic therapies. Last year, she underwent laparoscopic nephrectomy for simultaneous renal cell carcinoma with a focus of metastatic adenocarcinoma of the lung. Her love of life and family had provided her the grace and courage to continue the fight. Tragically, as I write these words, there are no further systemic or surgical options, and she was recently enrolled in hospice, 15 years after the diagnosis of “inoperable” stage IIIB lung cancer.

There have been dramatic changes in the science and practice of medicine, and the chaos of a typical clinical day often detracts from the traditional doctor-patient relationship. Despite the chaos, we still learn to be humble and are continually inspired by our patients. We can mentor our students, residents, and fellows about medical facts, but the ability to convey empathy and compassion is just as vital as the knowledge of complicated pathways. Our patients deserve our knowledge and experience, but this only goes so far without love to guide them in their decision-making. To foster and understand the factors that keep our patients living in the face of terminal disease, we need to endeavor to have a better understanding of love in the time of cancer.

[1]《霍乱时期的爱情》：我们看到过战争史诗、魔幻史诗……提到“史诗”，大多数人想到的都是宏大的场面，所以在这种时候，爱情多是其中的调味剂。然而《霍乱时期的爱情》却为我们展现了一场跨越50年的爱情长跑，这种无私且了无遗憾的感情，相信也足够承担起“史诗”二字了。

用半个世纪的时间去浇灌一朵爱情之花，对于提倡速食爱情的现代来说，只能用不可思议来形容，更何况故事的发生地是南美国家哥伦比亚的一座海港城市喀他赫纳，一个绝对物欲横流的复杂世界。这场彻底而纯粹的爱情开始于一个名叫费洛伦蒂纳·阿里萨的男人，这个爱做梦爱写诗的电报员从一幢豪华的别墅前经过时，偶然透过窗户看到了这户人家的女儿费尔米纳·达萨……爱情，就在这种完全预期不到的情况下降临了。勇敢的费洛伦蒂纳不肯轻易让幸福从指缝中流走，他用一封封热情洋溢的情书诉衷肠，终于慢慢敲开了美人费尔米纳的心扉。然而，毕竟两人身份地位相差得过于悬殊，所以当费尔米纳的父亲知道了自己的女儿竟然爱上了一个普通的小职员时，不但大发雷霆，还发誓永远都不让他们见面。一对有情人，却迫于世俗的压力，天各一方。

几年后，费尔米纳已经在父亲的安排下嫁给了久经世故的胡维纳尔·乌尔比诺医生，当时正值霍乱一波又一波以一种神秘的姿态包围着这个城市，胡维纳尔用药物重新为喀他赫纳带来了秩序，至于费尔米纳，则在丈夫的坚持下移居巴黎，一待就是好几年，当她重新回到家乡与丈夫和家人团聚的时候，差不多已经忘记了那个曾带给她无限美好回忆的初恋情人了。

然而费洛伦蒂纳却始终没办法对费尔米纳忘情，当年青涩的小伙子如今已经变成富有的船商了，而他钻石王老五的身份，自然成了众多名门淑女追逐的对象。虽然这期间他也尝试着去接受各种类型的女人，可是这一切似乎只为验证一个事实--费尔米纳才是他一生的真爱。费洛伦蒂纳决定用等待换回爱情，不过，这需要很大的耐心才成，因为这一等，就是50年。

《霍乱时期的爱情》写一个男人和一个女人之间爱的故事。他们在二十岁的时候没能结婚，因为他们太年轻了；经过各种人生曲折之后，到了八十岁，他们还是没能结婚，因为他们太老了。在五十年的时间跨度中，马尔克斯展示了所有爱情的可能性，所有的爱情方式：幸福的爱情，贫穷的爱情，高尚的爱情，庸俗的爱情，粗暴的爱情，柏拉图式的爱情，放荡的爱情，羞怯的爱情……甚至，连霍乱本身也是一种爱情病。而透过这些爱情，小说表现的是哥伦比亚的历史，是哥伦比亚人自己破坏哥伦比亚的历史。

[2]苏珊·桑塔格：美国作家、艺术评论家。1933年生于美国纽约，毕业于芝加哥大学。1993年当选为美国文学艺术学院院士。她是当前美国声名卓著的“新知识分子”，和西蒙・彼伏娃、汉娜・阿伦特并称为西方当代最重要的女知识分子，被誉为“美国公众的良心”。20世纪70年代中期，桑塔格被诊断患有乳腺癌，她做了乳房切除手术。从她那痛苦的治疗经历中，她写出了《疾病的隐喻》一书。得病是苏珊·桑塔格的思想的一个转折点。生病前的苏珊·桑塔格沉浸在文学艺术当中，在艺术思想中体现独特的趣味和智慧。但生病后，为了治疗，她穿梭于美国和法国的数家肿瘤医院，见到很多和她一样的病友，她开始认识到这个世界有很多隐喻和被遮蔽的真相。比如，人人都可能患的疾病和生病的人，却在健康人的社会处于尴尬位置。患者沉浸在对疾病的幻觉中和他人的歧视中，自觉有罪。但苏珊·桑塔格却不认这种罪。她认为这是一个自古就有的疾病的隐喻，在隐喻中，患者和疾病都被妖魔化。

苏珊·桑塔格从不为自己的疾病感到羞愧，更不妥协这种命运——最初诊断她患了癌症的医生认为她逃不过这一劫。她接受切除手术，请求医生让她进行2年半的电疗。两年半后，她战胜了癌症，同时发表了作品《疾病的隐喻》（Illness as Metaphor），从文学作品和现实背景分析疾病的文化寓意及其深刻影响，探讨“仅仅是身体的病”为何会变成道德批判，又为何会转换成一种社会压迫和歧视。

苏珊·桑塔格2000年获美国国家图书奖、2001年获耶路撒冷国际文学奖，并获得2003年度德国图书大奖――德国书业和平奖。卒于2004年。

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