我与癌 (24-乐在其中)
在洛杉矶,离好莱坞又是近在咫尺,没有点艺术修养,有时朋友和我交谈如同对牛弹琴,一窍不通。从小到大我虽然喜欢蹦蹦跳跳,胆大包天,可我五音不全,而且图画课总是得良。汗颜!
西洛杉矶抗癌协会正好开课,还特别强调,欢迎无绘画经验者参加。唾手可得的机会就在眼前。顾虑是怕自己体力吃不消,可转念一想,有生之年还是应该给予自己一点艺术的尝试,画画。尤其在美国,最赞赏的是个性,对我这种基本没有基础艺术教育的学生特别适合。我去了,有点忐忑不安。连续6个周六,每次两小时,我那个期盼呀,忘记累了,忘记饿了,忘我了呀,只怨时间走得太快。不试不知道,这一试验,我庆幸又找到一条康庄大道,精彩纷呈在前方。
感谢LG的学生们,帮我圆了一个梦。深知有生之年入伍是白日做梦,想入非非,但穿一穿军装,摆一摆姿式,留下点军姿,山寨一回,自我陶醉也 不错呀。LG竟然一语惊人,说我有点<幸福象花儿一样>里的孙俪的影子,我反驳说是她象我才对,我和她母亲差不多同辈吧。不管像谁,我就是我,像模像样的小解放军。
我在家这么些年,服装首先考虑舒服,然后才是时尚。这军装一穿上,走路得挺胸收腹,站立时不可东倒西歪,就这几张照,已把我累够呛,心想,天天要把军装穿出军姿,还真不是那么容易的一件事。特别感激LG的全力以赴,高效率帮助我完成任务,同时他还趁机在我们的院子踏了踏青,留下了花儿的倩影。(LG是劳模,平时逛院子是没有时间的)
最近中国微信泛滥,已波及不少在美华人,其中也包括我。感谢我的同学们组建的大中小学群,当群魔乱舞时,我恨不得有九头六臂来应对所有问题。特别感谢我的小学闺密XF和那时的绯闻男友X踏破铁皮终于找到我,并将我拉入群,也让所有同学终于有了一吐为快,报仇雪恨的机会。我惊叹我还曾被封为圣女,太抬举我了吧!
小学群的对话常常勾起许多特别美好的回忆,那些画面栩栩如生,如同发生在昨日。怀念那时的纯洁无暇,互帮互助,简单明快的生活。大家目前的生活是我们在成长过程中所没有料到的,至少我没料到,自然是好吃好喝,加好玩。但愿都能以身体为重,不玩物丧志!
至于我的血压,虽然调整了药,还是有点偏高170/100,但已不影响我的日常生活,还要继续调整。临床试验仍然在等待中!
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Me and Cancer (24 - Finding Happiness)
Living in Los Angeles, very close to Hollywood, I never had any artistic training. Friends and I occasionally act as if we were howling at the moon, knowing nothing of music. All my life I have liked to play and be daring, but I am tone deaf, and while I wanted to, I never could take drawing classes. What a shame!
The West Los Angeles Cancer Society just started an art class and especially encouraged students with no experience to attend. The opportunity was right in front of my fingertips. I was worried I was not strong enough, but then I realized, even students of my age should still be able to learn about art and painting. Especially in the United States, a place that admires character, this type of class suited me particularly well. I went, and was a little uneasy at first. For six Saturdays, two hours each week, I had something to look forward to; I forgot my weariness, I forgot my hunger, I even forgot myself. I only wish the time had not gone by so fast. If you do not try something, you cannot know what it is, and over the course of this experiment I was happy and found a new road, bright and brilliant in front of me.
Thanks to LG's students, I was able to fulfill a dream. I know well that being aware you are living the last years of your life is like living a daydream, and you can let your imagination run wild, but I still have responsibilities and am trying to make myself happy. LG has always managed to surprise me with a word, he has said I am like the character Sun Li from "Happiness is like a Flower" , but I disagree saying she is like me, our mothers are from the same age. No matter who is like whom, I am myself, living my own life.
During my time at home these last few years, when choosing clothes, I first consider comfort and then consider style. As soon as I put on a uniform, I walk with my back straight and stomach in, and never lean when I stand. Just taking a few pictures makes me tired, and I think that wearing these uniforms everyday is not an easy thing. I am especially grateful for all the effort LG puts in, efficiently helping me to complete tasks, and still takes the opportunity to walk in the grass and leaves flowers for me. (LG is a model worker, and usually has no time to walk in the yard.)
Recently, China's microblogging has entered America's Chinese population, and I have also started to use it. I want to thank my classmates for organizing classes of all sizes, and when I am running wild in class I cannot help but do everything I can to deal with problems. I especially want to thank XF and her boyfriend X for bringing me to the class, and for helping everyone enjoy the class more. Their help was too flattering to me!
My small class conversations usually evoked particularly beautiful memories, and helped bring those memories to life as if they happened yesterday. I miss that time of innocence and cooperation when life was simple and clean. Our current life is in the middle of something we did not expect, or at least that I did not expect, but life is good and we are happy. But honestly my body and health are the most important and I do not want small victories to get in the way of my long term progress!
As for my blood pressure, I am still adjusting to the drug and it is just above 170/100. But it is not affecting my daily life, and I am making minor adjustments. I am still waiting to hear about clinical trials!
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Xiaojun's Reflections
Friday, August 29, 2014
2014.03.03: 24 - Finding Happiness
2014-02-15: 23 - A Victory
我与癌 (23-马到成功)
自2011年3月的再次复发到今日已近3年。这3年来,我的五脏六腑犹如中国被污染的山山水水,虽然治理不断,却还从脚下漫延至漂浮的雾霾;一轮轮化疗的狂轰滥炸葬送无数癌细胞,但其中极其顽强者可以经变异产生抗药性而存活,并无限制繁殖。
2013年底的PET-CT结果显示,有旧肿瘤已缩小,也有新肿瘤出现,有点此起彼伏的阵势。说明我的癌为了能于我共处,不惜千变万化,与我同甘苦共患难,还要置我于死地不可。殊不知,我去了,我的癌也会随我而去!
我采用Avastin作为组和之一也已近3年。 因它是抗体,相比其它化疗药物,副作用要少好多,但其中特别明显的是会引起药物性高血压。自己觉得以练功54法为主,针灸加饮食为辅成功推迟高血压的发生近一年。2013年3月血压从原先的110/70 增至160/98时,便开始服用Amlodipine tab 2.5mg成功控制血压在120/90上下。
2013年8月起 Abraxane+Gemcitbine+Avastin 至同年底5个疗程的治疗,又开始渐渐失效。以为停用Avastin后,血压也许会慢慢回归正常。可事实上没有像 5 月份因肠梗阻停药后,血压复原那么简单了。那就继续服用,正好提前对付医生K 将给我上新药的副作用之一,凑巧也是高血压。
终于驱车前往与同事聚会了,也观赏了2014年 春节联欢晚会。在我Ca125达到700左右,医生K决定这次给我上的是口服化疗药Pazopanib+Cyclophosphamide,饭前1小时或饭后2小时服用。我先试了睡前服,希望副作用不会影响白天的活动。第一晚没有同时服用止吐药,结果不仅我的胃强烈反抗,3天后,我的天哪,血压冲达200/100, 我晕晕乎乎,悠悠恍恍。加降压药,结果是血压没怎么下降,两下肢开始浮肿,连脸部都摊上了。哪里还有生活质量可谈。
这次见医生K,我一反常态,开始谍谍不休的抱怨。因为我恪守,我不想死于治疗肿瘤的副作用。知道没有标准的切入点(Thresh hold), 我也没有任何经验,个体差异也较大。就慢慢学吧,我旨在生活质量,而非数量。该努力时会尽力而为,该放手时决不拖泥带水。只有病人自己平和接受,家人应该会欣然认同。
这让我想起开博以来收到素昧平生网友们的鼓励,关心。尤其是W和Y的热情好客,我感激之情,无以言表。我宣布,我走后,只希望您们惋惜我,不用可怜我;然后渐渐忘记我。不管在天堂还是转世,我更愿看见泪光后的笑靥。不好意思,我是否有点煽情的可疑?正巧拉长情人节的尾巴,应该没有大碍吧?一些话,一些事,在世时交代清楚,可以给后人省掉不少麻烦,减少很多不确定性。
言归正传。医生K果断决定化疗药减半(静滴化疗药用量按体重计算,而片剂却没有),和换降压药同时挺进。3天后,我又基本能正常好好学习,天天向上了。
Ca125 还是上涨,FDA批准的化疗药,我的选择已有限。Clinicl Trial 却如雨后春笋,层出不穷。该出手时就出手,但愿我能进入对我有效的临床试验,马到成功不敢奢望,那就马到半功吧。
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Me and Cancer (23 - A Victory)
It has been nearly three years since my relapse in March 2011. Over these three years, my internal organs have been like China's polluted mountains and water: though constantly being managed, the pollution still spreads from underfoot to a floating haze. Each bombardment of chemo destroys countless cancer cells, but some tenacious ones survive through drug resistance, and then they reproduce without limit.
The PET-CT results from the end of 2013 showed that some original tumors had shrunk, but new tumors have appeared. In its efforts to coexist with me, it keeps changing form, going through all my trials and tribulations with me, and thus insists on killing me. But little does it know, where I go, my cancer will follow!
I have been using Avastin as part of combination treatment for nearly 3 years. Since it is an antibody, unlike other chemotherapy drugs, it has many fewer side effects, but the most salient one is that it causes drug-induced hypertension. My training of the Fifty-Four Forms, combined with acupuncture and diet was able to ward off the hypertension for nearly a year, but when in March 2013 my blood pressure rose from 110/70 to 160/98, I had to start taking 2.5mg tablets of Amlodipine, which successfully lowered my blood pressure to around 120/90.
From August 2013 until the end of the same year, my 5-cycle treatment of Abraxane, Gemcitbine, and Avastin gradually became less effective. I thought that after I stopped taking Avastin, my blood pressure would slowly begin to return to normal. But in reality, things were not as simple as in May when my blood pressure returned to normal after I stopped Avastin following my bowel obstruction. So I continued to take it, getting a head start on managing one of the side effects of the new drug Dr. K was about to prescribe me, which happened to also be high blood pressure.
I finally drove to meet up with my colleagues, and I also watched the 2014 Spring Festival Gala. When my CA-125 levels rose to around 700, Dr. K decided to prescribe me the orally administered drugs Pazopanib and Cyclophosphamide, to be taken one hour before a meal or two hours after a meal. I first tried taking it before I went to bed, hoping that the side effects would not affect my daytime activities. The first night I didn’t take an antiemetic at the same time, and not only did my stomach rebel violently, three days later, my god, my blood pressure surged to 200/100, and I felt very dizzy and faint. I added drugs to lower blood pressure, and the result was that it didn’t lower my blood pressure much, but my legs started to swell and it even affected my face. I had lost all quality of life.
This time when I went to see Dr. K, I started to uncharacteristically complain. Because I was following orders, I did not want to be killed by the side effects of these drugs. I know there are no standard thresholds, I had no experience with these drugs, and individual experiences vary greatly. I would just learn slowly, aiming for quality of life rather than quantity. I will always put in the most effort when I need to, and know when I should give up. Only through peaceful acceptance by the patient, their family should then willingly relate.
This reminded me of all the encouragement and support I received from all my online friends, with whom I used to be strangers, since I started my blog. Especially W and Y, I have no words to express the extent of my thanks. After I’m gone, I only hope that you sympathize with me and not pity me, and then slowly forget me. It does not matter if I am in heaven or have returned to this world, I just want you to be happy after enduring sadness. Sorry, am I being a bit too melodramatic? Just happened to catch the tail end of Valentine’s Day, it shouldn’t be a problem, right? Some words, some matters, if explained clearly while one is still alive, can help avoid many frustrations and uncertainties later.
I will now return to the subject. Dr. K decided to cut my chemo doses in half (IV doses are calculated based on weight, but tablets are not), and also change my hypertension medicine. After 3 days, I was able to function normally again.
My CA-125 levels are still rising. In terms of FDA-approved drugs, my options are already limited. Clinical trials, however, were seemingly endless. I will try to participate when one is suitable, but I hope that I am able to get into one that is effective. I don’t dare to have extravagant hopes for a victory, so I guess I’ll hope for a half victory.
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2014.01.05: 22 - Unexpected Problems
我与癌(22-节外生枝)
今年的感恩节是我们搬到新家的第一个感恩节。
虽然车库里还有没打开的箱子,虽然房间的书桌上仍凌乱地堆满杂物,这一切都不足以让LG取消邀请学生来家过节的理由。要知道这正好是他再显大战火鸡,展示厨艺的绝佳机会。也许是我有太高的期望,自己觉得今年的火鸡味道不如 2012 年的,很有可能是因为LG 烹调从来就不按部就班,想哪做哪造成的。心知肚明就我事多,嘴上的赞美是绝不可少的。
感恩节后,哥嫂又如往年一样,飞来看我。见我又是生龙活虎的样,比5月前参加大闺女毕业典礼时的体力,体重都更胜一筹,宽心不少。今年抗癌大队组织的Party也没有拉下。
12月18日(星期三)做完今年的最后一次化疗,Ca125也在缓慢下降,满怀信心迎接节日的到来。20日星期五做完操,和队友一起去与我们已退休的气功老师共进中餐馆的早茶。虽不是我的首选,但偶尔一次,我的胃还是能对付的,再说也不能扫老外一年一次难得的兴致呀。餐后至临睡前没有觉得任何不适,还和老班长吹牛,我打了预防针,感冒是不会找上门的。
周六凌晨开始感觉咽喉部不爽,赶紧两包板蓝根下肚。这板蓝根对我太重要了,有记忆就和它结缘,不知多少回救我于水深火热之前。记得第一次品尝可口可乐,大脑反应不过是加了气的板蓝根而已,大失所望。这回我的天哪,板蓝根失效,到周日我竟然感觉不如周六,开始有低温,鼻塞出现。
23日已是周一,我竟起不了床了,温度也有上升,现实和我的愿望背道而驰。LG仍然上班,两闺女在家照顾我。体温已过100F,为了降温,我口服泰偌,认为体温恢复正常,自我感觉希望会好转。哥哥及时来电询问,要求咨询护士,结果护士建议,因我在化疗期间,为以防万一,打911 或自己去急诊。跟着医学院一年级的大闺女去了急诊,我虽体力不佳可心里窃喜。看着,听着她和值班医生叙述我的病情及讨论可能出现的各种情况时的专注和兴奋,我再次深深体会到,成为自己闺女的病人已在慢慢成为现实。抽血,拍片的结果是推翻医生准备让我住院的最初计划,我小解放军只要自配抗生素就可立马回家准备过节。
那几天洛城的气温高达80度,湿度是0。燥热的空气直奔没经鼻毛(化疗疗没了)湿润的咽喉,无法忍受,只能创新自救。24日开始用开水蒸汽湿润呼吸道,再戴上透湿的口罩,躺着上上网听听音乐,隐隐约约嗅到俩闺女已装饰过圣诞树散发的清香,伴随LG和大闺女准备圣诞夜晚餐时毫无节奏的交流声,我很知足!(好转明显,抗生素就免了,活学活用医嘱,不好意思)。
圣诞日,庆幸大闺女没有因我的节外生枝改变飞往东部看望好友及家人的计划。好友母亲的病情大有好转,从半年前步不出户到今日遛狗小跑不在话下,进步大大的,赞一个!
LG在我反复要求下,终于带我去看海了(1mile)。虽错过日落,但丝毫不影响我打湿裤腿,兴高采烈追逐浪花,默念我肯定不是后浪,但也否认是前浪,你们说我属于什么浪呀?
27日,LG也回国面试学生走了。我和小闺女相依为命(老妈原话),在我看来是又可以我行我素啦。看电影,逛大街,趁机开LG的Tesla飚车。在条件允许状况下,我要努力潇洒自如。癌暂且待一边去哈!
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Me and Cancer (22 - Unexpected Problems)
Thanksgiving Day this year was our first one since we moved to the new home.
Even though the garage still had unopened boxes, and even though there was a mess of objects on the desks in the rooms, this did not stop LG from inviting students to our home to celebrate the holiday. This was a great chance for him to show off his cooking skills in making turkey. Maybe my expectations were too high, but I felt this year's turkey was not as good as the one from 2012, very possibly because LG had never been a very systematic cook, and in cooking the turkey probably just did whatever he felt. But I knew I was just being picky, and my praise could not be left out.
After Thanksgiving, my brother and sister-in-law came to visit like in the past. When he saw I was still full of energy, even more so than during my older daughter’s graduation 5 months ago, and that I had gained weight since then, he was much relieved. This year the party thrown by the cancer association wasn’t left out either.
On Wednesday, December 18, I finished the last chemo treatment of the year, and my CA-125 levels were dropping, so I welcomed the holidays with my heart full of hope. On Friday the 20th after I finished my exercise, I went with my qigong friends to have dim sum with our retired qigong teacher. While it wasn’t my first choice, every once in a while my stomach could handle this, and I didn’t want to put a damper on this occasion that only happened once a year. Following the meal, up until I went to bed, I felt no discomfort, and I even bragged to our group leader that I wouldn’t catch the flu because I had gotten the shot.
Saturday morning my throat started to feel uncomfortable, and I immediately downed two packets of Chinese Banlangen medicine. This medicine is extremely important to me: I take it whenever I can, and I don’t even know how many times it has saved me from impending crises. I remember the first time I tasted Coca-Cola, I thought it just tasted like Banlangen with carbonation, and I was very disappointed. But today, my god, the Banlangen didn’t work, and by Sunday I felt worse than Saturday: I developed a low-grade fever and stuffy nose.
By Monday the 23th, I was no longer able to get out of bed, and my fever had risen. My reality had gone in reverse of my hopes. LG was still at work, but my two daughters were home taking care of me. My body temperature went over 100F, so to lower it I took Tylenol, thinking that once my body temperature went back to normal, I would feel better. My brother called to check on me, and told me I should call a nurse. When I called, the nurse said that because I was on chemo, I should either call 911 or take myself to the emergency room. I went to the hospital with my older daughter who was now a first year medical student, and though I was weak, this made me feel happy inside. Watching and listening to her focus and energy while recounting my condition to the doctor on duty and discussing possible outcomes, I realized that becoming my daughter’s patient was slowly becoming reality. My blood and imaging results were what overturned the doctor’s initial plan to have me stay at the hospital, and all I had to do was pick up some antibiotics they prescribed and I could immediately go home and prepare for the holidays.
Those few days, the temperature in LA hit 80 degrees, with no humidity. I couldn’t deal with the hot and dry air burning my nose (which no longer had any hair due to chemo) and my throat, so I had to come up with my own strategies. On the 24th, I started using steam to moisten my airways and wearing a wet face mask. Lying about, surfing the internet or listening to music, occasionally detecting the faint smell of the Christmas tree my daughters had decorated, and hearing LG and my older daughter conversing freely as they prepared Christmas Eve dinner, I was very content! (Since I had improved significantly, I didn’t take the antibiotics prescribed to me; I was selectively following doctor’s instructions and I felt guilty.)
On Christmas Day, I was especially glad my older daughter didn’t change her plans to spend time with friends and family on the East Coast due to my new unexpected health problems. Her good friend's mother's illness had significantly improved, from not being able to leave the house six months ago, to easily completing small jogs today while walking their dog. So much progress, that is great!
Under my repeated requests, LG finally agreed to go to the ocean with me (1 mile away). Although we missed the sunset, this didn’t keep me from getting my pant legs wet and happily chasing the waves. I thought to myself that I was not one of the back waves, but I wasn’t one of the front waves either. What kind of wave do you think I am?
On the 27th, LG left home too, to go back to China and interview students. My younger daughter and I depended on each other day to day, and I had the freedom to do whatever I wanted again. We watched movies, went shopping, and took the opportunity to drive LG's Tesla sports car. Conditions permitting, I will strive to be happy and carefree. Cancer will be put aside for the time being, ha!
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2013.12.05: My Experiences with the Side Effects of Chemotherapy
对付化疗副作用的体会
惧怕化疗,主要是惧怕化疗的副作用。化疗的副作用有许多,我只能从我自身经历过的,谈一些体会和对付手段。同一种化疗,它的副作用也是因人而异。反之,对我有效的方法并不能保证对你也有相同的效果,只能是参考而已。
恶心,呕吐( Nausea and Vomit) 是最常见的副作用之一。
1,按医嘱服用止吐药。请不要测试自己的底线,因为此类药发挥最佳作用是在症状出现之前。
2,如果医生配给的药失效(没有制止呕吐),一定用告知医生,可以要求换药。目前止吐药物种类繁多,相信一定有一种会对你有效。
3,如果出行,我喜欢随身携带小瓶 薄荷精油 (Peppermint Essecial oil )。如恶心袭来,可深深吸入沁人心肺从而暂时缓解或驱除恶心。带几块姜糖或喜爱的Gum也是一个不错的选择。
4,饮食最好是少食多餐,因空腹更也能诱发恶心。多吃汤汤水水易消化,易吸收的食物,因一般止吐药,会同时不同程度抑制胃肠蠕动。
5,尽可能保持口腔的卫生。化疗前,该洗牙请洗,该补的牙请补,没有后顾之忧。坚持早晚刷牙,用牙线。没有精力刷牙,睡前就是漱漱口也管用。
6,针灸对恶心,呕吐均有缓解的作用。
在便秘与腹泻 (Constipation and Diarrhea)之间寻找平衡点。病友经常谈到宁可稍稍泻,也不愿久久秘。
先聊便秘。(一般在服用止吐药期间会出现)
1,预防可以从控制饮食着手。以易消化的食物为主,首选汤汤水水。适量的运动也是必不可少的。每晚睡前腹部顺时针按摩也有帮助。
2,建立定时"解放"的制度是必须的。时间到,没有便意,仍然如厕,并给予充足的时间。
3,便秘1至2天问题应该不大。如果超过3天,我会服泻药。可以用over count 的,口味不太好。我个人建议用中成药,当茶喝。
4,有时因为长久坐躺姿,加上大便干燥,会诱发肛口出血。建议洗浴后涂抹 A+D Original Ointment.( for baby diaper rash) 对我很有效。建议经常做肛门括约肌的收缩和放松运动。
再说腹泻。
1,如是泻药过量,请即可停用。 2,补水,淡盐水或 Sports Drink Gaterade均可,预防身体失水而导致体内电解质失衡。 3,清淡饮食,首选白米粥。循序渐进,逐渐恢复正常饮食。 4,针灸对缓解腹泻与便秘均有帮助。 暂时就想到这些,请大家补充。
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My Experiences with the Side Effects of Chemotherapy
A fear of chemotherapy is mainly a fear of the side effects of chemotherapy. Chemo has many side effects, and I can only speak from my own experiences and speak about what I did to cope with them. Even with the same type of chemo, the side effects might vary from person to person. Likewise, treatments that were effective for me might not necessarily have the same effect on you, so this is only for reference.
Nausea and vomiting are the most common side effects.
1. Take antiemetics prescribed by your doctor. Please do not test your bottom line, because these drugs work best before symptoms appear.
2. If the drugs prescribed by your doctor don’t work (e.g. you do not stop vomiting), you must inform your doctor and request new drugs. There are a vast number of antiemetics, and I believe there must be one that will work for you.
3. If you are going to travel, I like to carry a small bottle of Peppermint Essential Oil. If you get nauseous, inhale it deeply for temporary relief. Carrying a few pieces of ginger candy or your favorite gum is also a good choice.
4. It is best to eat several small meals, because having an empty stomach can also induce nausea. Eat soups and other foods that are easy to digest and absorb, because usually antiemetics will inhibit stomach peristalsis to varying degrees.
5. Maintain oral hygiene as much as possible. Before chemotherapy, get a cleaning or any dental fillings if needed; then you won’t have to worry about it later. Stick to brushing and flossing twice a day. If you don’t have the energy to brush your teeth, rinsing your mouth before bed works too.
6. Acupuncture is also effective against nausea and vomiting.
Find a balance between constipation and diarrhea. Patients often say they would rather have slight diarrhea than sustained constipation.
I will first talk about constipation. (This typically occurs while taking antiemetics.)
1. You can prevent constipation by controlling your diet. Eat easily digestible foods, primarily soups. An appropriate amount of exercise is also essential. Abdominal needle massages every night before bed can also help.
2. It is important to establish a regular "liberation" of the bowel system. When it is time, even if you don’t feel any urge, you must go to the bathroom and give yourself sufficient time.
3. Constipation for 1-2 days is not a big problem. If it remains for more than three days, I would take laxatives. They can be purchased over the counter, but do not taste very good. I personally recommend using traditional Chinese medicine; drink it like tea.
4. Sometimes because of long periods of time sitting or lying down, combined with dry stools, one may experience anal bleeding. I recommend using A+D Original Ointment (for baby diaper rash) after bathing, which I found very effective. I also recommend often doing anal sphincter contraction and relaxation exercises.
Now onto diarrhea.
1. If it is due to too much laxatives, you can just stop taking them.
2. Replenish fluids. Salt water, or sports drinks like Gatorade, can be used to prevent electrolyte imbalances caused by dehydration.
3. Eat a light diet, such as white rice congee. Step by step, you can gradually return to a normal diet.
4. Acupuncture helps relieve both diarrhea and constipation.
That’s all I can think of for now, everyone please feel free to add anything.
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2013.12.04: 21 - A Seven Year Itch
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我与癌(21-七年之痒)
与癌携手至今已七年。
它越来越狡猾多变,对付它我也许永远称不上得心应手,不过还算能坦然自若吧。将来我末日来临,它肯定功不可没,但至少在与它较量的过程中,我学会了聆听自身,学会了如何声东击西转移注意力,最最重要的是学会了用心宁神静来对付它的风情万种,总之切切实实受益非浅,自封虽败犹荣。时至今日觉得自己仍然特别幸运,因我还能与亲朋好友分享啃火鸡的乐趣和迎圣诞的点点滴滴。
今年(2013)夏季的出游最终以LG的会为主,玩为附,经 Calgary 至 Banff Nation Park of Canadian Rockies 划上句号。是我在接受原有 Avastin+Abraxane的基础上,增加Gemcitbine 的治疗刚刚开头时。予公予私都只允许走马观花,到此一游,于8月8日打道回府。
计划原本就此打住,可是化疗后不经意与妈妈的一次视频,我毫无修饰的脸色竟增添了妈妈对我的无比牵挂。为打消她的担忧,也为圆我自己的一个梦,鼓起勇气征得医生K和俩闺女的同意,很快决定推迟化疗3周和LG一起,我回家探望父老乡亲,他出差顺带探亲访友。
我的梦是趁LG同行,同心携父母,婆婆,LG的姐姐,姐夫共游九寨黄龙,为来日去西藏探探路,也算是我们给妈妈,婆婆80大寿的礼物。没有姐姐的精心按排,我们此次不可能这么顺利成行。虽因九黄机场跑道结冰,只能改降成都双流机场而耽误了时间,游黄龙改道游河洲古城,也丝毫没有影响我观赏九寨沟最灿烂季节的美好心情。
金秋21日,九寨沟,我终于来啦!果然名不虚传,美不胜收,毫不逊色于许多美国国家公园,难怪十一长假游客达8万之多。真正感到目不暇接呀,抬头见树从水中生,低头看水在树间流,眼前观五彩斑斓的红叶在湖光流韵间漂浮。
我没有能力用文字描绘出展现在我眼前一幅幅大自然的美妙图案。我流连忘返珍珠海的大珠小珠落玉池,深深赞叹幽幽长海的气势磅礴,细细品味偌日朗瀑布撒落于我脸庞上的清丽水珠花。轻盈飘逸的融融芦花海将是重返的理由之一。
在海拔3000-4000米(大约 9000 feet)游山玩水,深刻体会到力不从心。但和三位80高令长辈一起同行,我哪好意思示弱呢!有许多次LG主动请战,让我入座他宽厚的肩背。次日,见游人稀疏,婆婆也没影,我就好好享用了一把,结果是腿脚酸转移成手臂酸啦。可爱的LG还放很话:如需要,背丈母娘也不在话下,把我妈哄得乐不可支。
LG在家每天基本是早九出,晚九归。我和俩闺女已习惯没有他的晚餐,我努力争取过,晓之以理,动之以情,结果我们放弃,给他自由,也给我们三有放松随意的交流空间。他目前可是我们全家的顶梁柱啦。感激不尽这七年来对我的不离不弃,忍辱负重。把我从刚化疗时的手足无措训练成独当一面的斗士。尤其是这次回国,让我感觉到冉冉的爱,柔柔的情。
杭州十月,柳丝仍绿,荷叶已黄。一别又是3年。感谢我初中,高中及大学同学抽时间和我聚会并在wechat上组群保持联系;感谢爸妈仍然亲力亲为好吃好喝招待我;感谢俩闺女的鼎力支持,独立自主守家园。
短暂停药带来的是成倍上涨的Ca125(200到500),这在意料之中,情理之外,没有丝丝悔意。这次回国留在记忆里的尽是甜甜蜜蜜的美景人情。
第二个七年已在眼前,我又该如何珍惜!
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Me and Cancer (21 - A Seven Year Itch)
I have been living with cancer for almost seven years.
Cancer is becoming more and more cunning and varied, against it I can never really have a steady plan, but I can be calm and confident. In my future the end is coming, it is sure, but in the process of getting to the end I have learned to listen to myself, to distract myself, but most importantly to listen to my heart and spirit to know the world; I have benefited from this experience, and even if I am defeated I will prosper. Even to today I feel that I am very lucky, because I can still share Thanksgiving turkey and enjoy each and every bit of Christmas with loved ones.
This summer (2013) LG was in charge of our trips, and we went from Calgary to see the Canadian Rockies in Banff National Park. This was when I was already taking Avastin and Abraxane and they added Gemcitbine treatment on top of that. I was able to see all at a glance, and we traveled from August 8 until we returned home.
The original plan was just those two, but the uncertainty of my treatment and a video from my mother made me want to change plans. In order to ease her fears, and also to fulfil a dream of mine, I got the courage to ask Dr. K and my two daughters for permission, and very quickly decided to postpone chemo for three weeks and return to my hometown with LG to visit family and friends.
My dream was to travel together with LG, my parents, my mother-in-law, LG's sister, my brother-in-law, and together swim in Jiuzhai, go to Tibet, and to give my mother her 80th birthday present. I could not take into account my sister's plans on this trip. The Jiuzhai Airport had ice, so we had to change our landing to Chengdu and lose time in getting to Jiuzhai. We were able to tour Hezhou and this did not impact my mood about getting to see Jiuzhai and I was happy.
On the 21st day of Autumn, I finally got to Jiuzhaigou Valley! It lived up to its reputation, and was even more beautiful than many US national parks. It is no wonder there are more than 80,000 tourists who visit over the holidays. There were too many sites for me too see all, just by raising your head you can see a tree growing from the middle of the water, by lowering your head you can see water flowing by the tree, and you can see the beautiful autumn leaves floating on the glimmering lake.
There are no words to describe the natural beauty I saw in front of my eyes. I was so amazed I forgot to return home, I lost my breath at the sights and felt the clean, fresh drop of water on my face. To live again in light, elegance, and harmony with the sea is just one reason to return to this place.
At an altitude of 3000-4000 meters (about 9000 feet) we traveled from one beautiful spot to another, I only wish I could travel longer. But traveling with three people over the age of 80, how could I be the one to seem weak! There were many times LG asked to pause, to let me sit and support myself with his back. On this day, we did not see many other travelers.
At home LG would leave in the morning at 9 and return by 9 in the evening. My daughters and I already became accustomed to not having him around for dinner, so I work hard to convince him to come home for dinner, but in the end I gave him freedom, and did not stress about him not being home, which left the three of us more relaxed and with freedom to talk. He is a pillar in our family. I am so grateful he has not left me alone over these past seven years, and that he has supported me. He has helped me transform from a helpless patient to an independent fighter. Especially on this trip back home, he made me feel so loved, and was so gentle.
October in Hangzhou, the willows were still green and the leaves yellow. It had been three years for me. I thank my middle school, high school, and college classmates for taking the time to connect with me on wechat. I thank my mom and dad for taking the time and effort to take care of me still. I thank my two daughters for their valuable assistance and for watching over our home while we were away.
Postponing my treatment led to an increase in my Ca-125 level (from 200 to 500), which is expected and reasonable, and I do not have an ounce of remorse. This trip home is full of beautiful and sweet memories and feelings.
The second seven years are already in front of my eyes, how I will cherish them!
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2013.09.15: 20 - Birthday Presents
我与癌 (20-生日礼物)
2013年7月是我人生半世纪的生日。说不上该怎么度过,随大闺女和LG任意摆布,还是很幸福的一件事。最重要的是我不操心,不担心,只留住开心。
虽然 Ca125 的走向不理想,5月15日是91;5月30日是181;7月3日是196;7月17日是219。Avastin+Abraxane 似乎也开始渐渐失效。我对数字已漠然,已渐渐学会冷眼旁观,宠辱不惊。
生日晚餐由大闺女按排,LG出大银,(大闺女特别体恤LG,主动提出她一周后生日的聚餐就免了)让全家享受了一回极精致的美食和超五星级的服务。我心里还是有些嘀咕,联想到了生活在饥寒交迫,水深火热中的非洲儿童。(别笑我哈)但50年我仅仅一次,且我是劫后余生,我也不容易呀。就又很坦然自若, 尽善尽美地享用起来。
烦蛋糕,嚎巧克力。
家人又问我想要什么礼物,我说想跳伞(Sky Diving)。不抱希望家人会有任何举动。小解放军从小就特别崇拜解放军。是操场上看地道战,地雷战时会激动,害怕得在小板凳上坐立不安的幼女;是入学后在学习雷锋好榜样的歌声中茁壮成长的儿童;是给自卫反击战战士写过感谢信的中学生之一。仅一步之差我也许就是其中一员,爸妈劝阻说,部队里找男朋友都是要服从命令听指挥的,我立马傻眼。小解放军军训时给的5发中48环。真正给我勇气的是前总统老Bush 85岁(2009年)的生日礼物就是跳伞。
大闺女几天后郑重其事通知我一切都已搞定。因为我还在治疗期间,需要医生的许可证。医生K的答复是 Enjoy。这些年和这里医生打交道的经验所得是:病人是任何治疗方法的最终决定者,病人是自身承受力的开拓者,最终也应该是还有多久日子的真正知情者(也许只适用我)。
我从13000英尺跳了(其实就把自己当小袋鼠),我在云朵上飞翔,我查看了虚无飘渺的天堂,鸟瞰了美景如画的人间,竟没有一丝害怕。录像里我开口的第一句话竟是 I want to do it again. 我二吧?
其实在签约之时,我心里七上八下,很想问问公司是否出过差错。我本人肯定会坚持,只是带上LG和大闺女很不妥,这万一,,,,,但我没有问,觉得无论结果如何,不会影响我的决定。LG和闺女已是成人,他们完全可以做适合自己的选择。结果我们三位成功脚着地。
过后,我问二位签约时想啥。同时答到,万一降落伞失效,是该脚,还是臀部先触地。有其夫,必有其女哈,哈,哈。
我们这一跳,闺女在脸书上也算是火了一小把。
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Me and Cancer (20 - Birthday Presents)
My 50th birthday was in July 2013. I cannot say how I should spend the day, but spending time with my daughters and LG is a very joyous thing. The most important thing is that I do not worry, just do not worry, and remain happy.
The trend in my CA-125 levels is not ideal: 5/15 it was 91, 5/30 it was 181 7/3 it was 196, and 7/17 it was 219. Avastin and Abraxane seem to be losing effectiveness. I have already stopped caring about numbers, and have learned to sit on the sidelines, whether I get good or bad news.
My older daughter organized my birthday dinner, and our family enjoyed a very nice dinner with five-star service. My heart still felt a little uncomfortable, thinking of those who were less fortunate than us, like cold and hungry children in Africa. (Don't laugh when I say that!) But I was completely at ease and was able to enjoy the evening.
I am tired of cake and chocolate.
My family asked me what present I wanted, and I said to go sky diving. I did not think they would actually take me. I have really wanted to do this since I was a child. Seeing warfare on the ground, and earthquakes that moved the earth, as a young girl I was afraid that even sitting down I was not safe. After entering school, I learned the songs about Lei Feng; I learned how to fight back and be strong. What also gave me courage to do this was that for his 85th birthday (in 2009), President Bush went skydiving!
My older daughter told me a few days later that everything was set. Because I was still in the middle of treatment, I needed a note from a doctor. I asked Dr. K, and all he said was 'Enjoy!' My experience dealing with doctors over the last few years has been the following: patients are the ultimate decision makers in treatment, the patient knows best what she can handle, and finally to know how long she can take a certain treatment (maybe this one is only me).
I jumped from 13,000 ft (I felt packed up like a small kangaroo before the jump); I flew in the clouds; I saw a paradise in the skies, and got a bird's eye view of the picturesque scene, and did not feel an ounce of fear. The first thing I said when I landed was, "I want to do it again." Round two?
In fact when I signed the contract, I was very worried, and I wanted to ask them if they ever make mistakes. I was definitely going to continue, I was just not sure if I was going to bring LG and my daughter...but I did not ask because I knew whatever they said it would not influence my decision. LG and my daughter are adults, and can make their own decisions. Thus the three of us successfully landed on the ground together.
Later, I asked LG and my daughter what they were thinking when they signed the contracts. They responded at the same time, “If the parachute fails, should we land on our feet or our butts?” Like father, like daughter.
When we jumped together, it was like a small fire was lit on my daughter’s face.
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