郭西苑，1954年10月14日 – 2006年12月1日
一个慈爱的父亲，体贴的丈夫，情深义重的兄弟和朋友。也许他的一生朴实无华，但他如金子般的心永远闪光。他的真诚和善良永远留在我们的心中。虽然他离开了，他的爱仍与我们同在。
在那14个月艰难而孤独地和软骨肉瘤作斗争的日子里，有痛苦，有悲伤，有恐惧，有眼泪，有愤怒，但他顽强地坚持，用他的幽默，笑声，坚强的意志和不屈的精神勇敢地和病魔搏斗。他从来都没有放弃，即使在那最困难的最后的日子里。
西苑，安息吧，我们永远地怀念你。
病情历程
2004年2月由于冬天路滑，不小心摔了一交，右侧髋关节和肩膀疼痛约一个月。（可能造成髋关节内淤血，这也许是肿瘤的诱因）
2004年10月：右脚跟有时会疼。（肿瘤可能已悄悄生长，）
2005年2月：被注意到右腿有点瘸。
2005年5月：右腿感觉疼痛、麻木、无力，像腰椎间盘突出发作的症状，卧床休息稍有改善。
2005年5月 – 2005年9月：6月照了X-光片，没有诊断出任何骨盆的问题，有的医生拿着X-光片说是尾椎骨裂，建议多休息，给开了一些止疼药，没有好转。7月骨科医院的一位老大夫建议作E-CT（骨扫描）以检查髋关节是否有问题。其间还做过按摩，没有好转。疼痛逐渐加剧，尤其是夜间，走路需要用拐杖帮助。
2005年9月4日：病情加剧，因剧烈疼痛和不能动，急诊进入中国医科大学第一医院，入院检查，X-光片显示骨盆处有溶骨现象。9月6日经全身骨骼核素显像（ANT，POST）检查，诊断为：右侧髋臼及坐骨显像剂分布异常浓聚，不除外恶性肿瘤骨转移改变，建议寻找原发灶。因无法确诊，2005年9月10日转入北京东方医院，待查。
2005年9 月13日北京东方医院放射科影象诊断：肺部有可疑小结节，15日CT诊断：肺部索条影，考虑陈旧性结核可能性大。其间做了各种检查都正常，未查出恶性肿瘤。
2005年9月19日，因骨盆随时有断裂的危险，请北京协和医院大夫做介入手术，注入骨水泥加固，并做了活检。活检报告为：间叶性恶性肿瘤 ，结合免疫组化考虑为骨源性肿瘤或纤维组织性肿瘤。
2005年9月26日送活检报告到中国医学科学院、中国协和医科大学肿瘤医院刘复生教授处，因切片不清楚和死细胞太多，没有作出确切诊断，但被断定为：恶性骨瘤。
2005年9月29日到卫生部北京医院PET中心做PET/CT检查，诊断：右髋臼、部分右坐骨、右股骨头、股骨颈和大小粗隆骨质破坏，代谢异常增高，中央部分可能存在组织坏死而呈等代谢或低代谢状态。该病变恶性肿瘤可能性大。其他部位未发现异常。东方医院建议转入北京积水潭医院手术。
2005年10月6日：转入北京积水潭医院骨肿瘤科。10月9日和10月11日医院影象学诊断：右髋关节间隙变窄，髋臼后缘及坐骨支骨质密度减低，呈溶骨破坏；右肺内可见小结节影（大夫怀疑肺癌），10月9日病理定为：高恶性肉瘤部分有软骨分化。10月17日先后作了CT，MRI，描述：右髋臼后缘骨质呈溶骨性破坏，局部软组织肿块边界不清。医生决定不做活检直接手术，因为肿瘤较大，手术有三种可能性：半骨盆及右下肢切除；肿瘤，股骨头髋关节及部分骨盆切除，右下肢旷置；肿瘤，股骨头髋关节及部分骨盆切除，在剩余骨盆及右大腿骨处以马鞍型假体连接。本人要求装马鞍型假体，于是在术前做介入手术，将肿瘤周围较大血管实行栓塞术，一周后于10月25日由骨肿瘤科主任蔡尤伯医生主刀，孙宇庆、郝林、王涛3个大夫协助。手术从上午9点30分进行到下午2点，共4小时30分，切除了肿瘤，并组装了马鞍型假体（体长10cm）由于安装马鞍型假体留下部分骨翼加之手术由右侧腹股沟入路，而活检由臀部进入，手术时无法清除活检路径，留下了隐患，这也是快速复发的原因之一。
术后在重症监护室住了24小时，术后情况基本正常。各种引流管逐渐摘掉，21天后拆线。但是积水潭医院没有给予具体的康复指导。而美国的医院通常在骨盆手术10天后就会让病人开始下地康复。马鞍型假体置换术的病人会带一个臀部及大腿的固定装置，可以控制腿前后左右的运动角度。
2005年11月14日：手术后积水潭医院没有给出肿瘤类型，只定义为高度恶性骨肿瘤。标本送到中国协和医科大学肿瘤医院刘复生教授处，诊断为中分化软骨肉瘤累及脂肪组织，并有死骨残存。在协和医科大学肿瘤医院顾大中医生处咨询下一步治疗方案，建议打三个疗程化疗并加放疗。11月15日出院。
2005年11月15日住进了辽宁省肿瘤医院，至2006年2月，做了三个疗程的化疗，肠胃道的反应非常强烈。2月初开始尝试下地锻炼。
2006年3月：开始放疗，放疗做了几次后腿开始肿胀，辽宁省肿瘤医院无法确定原因。询问骨软骨肉瘤网上社区的病人是否有类似经历，Mary-E, Courtney, Keith 回e-mail介绍了他们由于放疗也曾引起过淋巴水肿，Mary-E和Courtney的放疗也是在骨盆部位。在腹股沟处有淋巴结，像乳腺癌放疗后可能会影响腋窝处的淋巴结引起胳膊肿胀，在骨盆处的放疗也可能会引起淋巴水肿。
2006年4月：刀口处出现了一个小包，在活检位置也出现了一个小包，放疗使活检处的小包缩小，结夹。但刀口处没有接受放疗，小包继续生长。医生怀疑是复发。4月底接受了NDV(生物细菌免疫的治疗)，注射一个月没有什么作用。
2006年5月：CT检查在假体处有大量反光伪影，医生说无法断定任何情况（在辽宁省内无法找到可以给携带假肢的病人做检查的ct机）。肺部出现两个肿瘤转移，大概像黄豆大小。辽宁省肿瘤医院认为没有办法，给出两，三个月的生命的论断。但在这段时间里，经过康复，可以从床上依靠帮助起来，可以在轮椅上坐两个小时，借助走步器在家里从这间屋走到另一件屋，用拉力器可以拉开三根拉力筋。但渐渐由于肿瘤复发，越来越坐不住了。肿瘤顺着刀口长，在腰部鼓起了一个大包，后溃疡流水。
2006年6月 - 7月：进入辽宁省人民医院骨肿瘤科治疗。经B-超检查发现在刀口处内部也有多个肿瘤，因B超探头不够无法确切的诊断肿瘤的数量和位置。于是，进行了多药联合大剂量化疗。6月17日到6月21日，前三天进行了顺铂，阿霉素大剂量化疗，白血球降到100多。7月10日到7月13日连续4天异环磷酰胺，出现激动，幻听幻视。7月26日到7月30日，重复顺铂，阿霉素大剂量化疗，各项血项都很低，输血打增白针。
2006年8月：B-超检查，一个原来6厘米的肿瘤长到了9厘米，在靠近前列腺处发现了另一个，（但从后来看到的资料中得知B-超是一种不很准确地检查手段，即使是同一台机器两个技师做出的检查结果也有可能不同）。肺上的肿瘤没有长大。由于化疗的副作用和B-超检查的结果，病人要求停止化疗出院。医生建议虽然不化疗了，要尽快开始下一步手术治疗，肿瘤的发展很快。
2006年9月-10月：在家里服用了一些维生素，中药等非处方药及希乐葆。其中有两次拉肚子，各10到15天，身体非常虚弱。同时，寻找在沈阳能做半骨盆切除手术的医院。沈阳的医院认为有假体在体内，不给做MRI检查，（澳大利亚的网友Paula装有同样的假体，做过多次MRI核磁）。同时也没有找到任何给与做手术的沈阳医院。
2006年11月初：家人去北京和蔡尤伯医生联系，做手术的可能性，蔡医生认为难度很大，没有足够的皮瓣包裹创口，病人体质是否能抗过如此大的手术，手术后很可能迅速复发。建议照个全身骨扫描。回来后，在中国医科大学第一医院做了全身骨扫描：在左腿股骨头处，第5腰椎处有显影剂异常增浓。这时肺部的肿瘤已经发展的很快了。11月10日开始呼吸困难，3天3夜都没怎么吃没怎么睡。11月13日星期一住进了辽宁省肿瘤医院，右肺积水，经导管排水，呼吸困难缓解，但很快又出现积水。最后的X-光显示左肺也长满了肿瘤。肺部的肿瘤在这3个月里悄悄地以极快的速度增长。腿部疼痛加剧，开始使用吗啡止疼。
2006年11月30日开始处理善后事宜，2006年12月1日上午11.28分,西苑带着对所有亲人的留恋离开了。
在这14个月与病魔艰苦斗争中，大部分时间他都只能卧床不起，在病痛的折磨上增加了精神的折磨，他甚至不在乎能活多久，而是极其希望自己能站起来，而在骨软骨肉瘤网上社区发达国家的骨盆肿瘤病人中是基本没有这种情况的。殷切希望中国的医生们也能开始关注病人的生活质量，在手术康复，疼痛控制，放化疗副作用控制，临终关怀等各方面给与重视，使癌症病人能有一个较好的生活质量。
Guo, Xiyuan, 10/14/1954 –
12/1/2006
A loving father, caring husband, beloved brother and friend. He had a life, maybe humble, but shining through his big heart. He treated people with sincerity and kindness. His love is still being felt although he is gone.
In 14 months of a lonely and difficult journey, fighting Chondrosarcoma, there was pain, sorrow, fear, tears, and anger. But, he endured, and battled it courageously with his humor, laughter, strong will and fighting spirit. He never gave up, even in his most difficult final time.
Xiyuan, we know you are at peace now. You will be missed terribly.
Medical History
2004
February: Fell down hard in a slippery winter road, right hip and shoulder pain lasted for about a month.
October: Sometimes felt pain at ankle of right foot. (The tumor may be already there for sometime, maybe months, maybe years, as the symptoms started to show.)
2005
February: A slight limp was noticed on the right side of leg.
May: Started to feel numbness and pain in right leg, told “prolapse of lumbar inter-vertebral disc” like symptoms. With rest, symptoms improved a little bit.
June: X-ray was done and not able to find cause of pelvic problem, some doctors suggested as possible fractured sacrum. Told to rest, pain killers were given, not much improvement.
July: Another doctor suggested to do bone scan for the acetabulum area. He suspected problem with femoral head. In the meantime, no improvement, pain increased, especially at night, needed a crutch to help walking.
September 4: Severe pain and not able to move right leg, entered
into the emergency department of
September 6: Whole body bone scan showed unusual activities at right femoral head & adjacent pubis, suspected as malignant tumor metastases to bone, suggested to find original tumor, no clear diagnose.
September 10: transferred to
September 13: In
September 15: lung CT scan, diagnosed as, most likely, old tuberculosis scars. Other tests were given, no abnormal.
September 19: Biopsy was done, to avoid the risk of pelvic bone fracture. In the meantime, bone cement was used to reinforce the pelvic bone. Diagnosis was Mesenchymal Malignant Tumor, probably originated from bone or soft tissues.
September 26: biopsy report was sent to Dr Liu Fusheng at Cancer Institute & Hospital Chinese Academy of Medical Sciences (http://www.cicams.ac.cn/web/index.aspx). No definite diagnosis due to too much dead cells, only defined as malignant.
September 29: whole body PET/CT scan at
October 6: transferred to
October 9: pathology report diagnosed as malignant sarcoma with cartilage tissues.
October 10: Imaging tests reveal right acetabulum, pubis and ischium bone intensity decreased, bone dissolved; small nodes shown at right lung (suspicious as metastasized to lung).
October 17: CT and MRI indicate that bone around right acetabulum showed erosion, no clear edge at soft tissue. Doctors decided to do surgery right away. Three possible methods of surgery considered: hemipelvectomy; resection of the tumor, femur head, part of femur and hip bones, leave with flail limb; resection of the tumor, femur head, part of femur and hip bones, replaced with saddle prosthesis.
October 25: the surgery was performed by Dr. Cai Youbo from Beijing Ji-Shui-Tan hospital, Dr. Sun Yuqing, Hao Lin, and Wang Tao were assistants. The operation started from 9:30AM till 2:00PM, lasting 4 hour 30 minutes. The tumor, femur head, femur neck and periacetabular bones were taken out, saddle prosthesis was inserted to the defected area as the resection method. The operation incision was from the front, but the biopsy was done from the hip on the back, this left the risk for recurrence. Guo stayed in ICU for 24 hours, recovered well, tubes were taken out gradually. But no rehabilitation guides or program were given from Ji-Shui-Tan hospital.
November 14: Ji-Shui-Tan couldn’t define the tumor type, only
defined it as high grade malignant tumor. The resection sample was sent to Dr
Liu Fusheng at Cancer Institute & Hospital,
November 15: released from Ji-Shui-Tan hospital, went back to home
town
From 11/15/2005 to February 2006, three rounds chemotherapy, very bad side effects, hair loss, nausea and vomiting, low white and red blood cells. Started rehab exercise in February 2006.
2006
March: started radiation therapy. After several rounds, leg started to swell; the hospital couldn’t diagnose the reasons. Inquired to CS group, Mary-E, Courtney, and Keith e-mailed back telling their experiences with lymphadema.
April: a small bump showed up at the incision area, and another one in the biopsy area. Radiation therapy shrank the bump at the biopsy area, the bump in the incision area continued to grow. It was suspected as recurrence. At the end of April, received NDV injection (a cancer vaccine) for a month. It was not effective.
May: CT showed a lot of artifacts around saddle prosthesis, couldn’t get clear image. Two small tumors were found in lungs. The hospital had no treatment options and predicted Guo could only live two to three more months. At the same time, Guo made great effort on rehab, could get up from bed with help, walk 50 feet with walker, sit for a couple of hours. But the bump continue to grow.
June-July 2006: enter
June 17 to June 21, high does Cisplatin and Adriamycin, white blood cell counts went down to 100.
July 10 to July 13, 4-day Ifosfamide, very bad side effects, nausea, vomiting, hair loss, central neurotoxicity (couldn’t sleep, hallucinations).
July 26 to July 30, repeat Cisplatin and Adriamycin. Low red and white blood cell count, blood transfer and injection drugs to increase white blood counts.
August: Ultrasound scan revealed one 6 cm tumor grew to 9 cm, plus one new tumor was found. But the tumors in lungs didn’t grow. Because of the scan result and side effects, the chemotherapy was stopped.
September to October: stay home, seeking the possibility of
hemipelvectomy. No hospital in
November: Bone scan showed two possible metastases locations at left femur and spine. Started to have difficult breathing.
November 13:entered Liaoning Cancer Hospital & Institute again. The lung fluid was drained several times. The last X-ray showed there were a lot of tumors on the lungs.
December 1:
After a difficult journey of fighting with this terrible disease, Guo
left this world although he was so reluctant to leave all his loved ones.
Finally he is at peace and free of any pain or discomfort.