舌癌并不常见, and it's especially unusual for it to strike a young person who doesn't smoke or drink heavily. 凯特·布朗年仅32岁, 刚结婚,开始一份新工作, 当她得知她舌头上的一个斑点是舌癌晚期时. 布朗被转介到加州大学旧金山分校健康中心, where surgeons recommended a drastic treatment that was her best shot at survival: a total glossectomy, 或者拔除舌头, 然后是化疗和放疗.
舌癌和全舌切除术后的生活
四年后, 布朗没有癌症,而且, 不像很多接受全舌切除术的病人, 能听懂吃饭和说话.
你是怎么发现自己得了舌癌的?
我喉咙痛时,舌头上出现了一个小疮. I took antibiotics for the sore throat, but the spot was still there after the sore throat subsided. 然后我开始耳朵疼,而且疼得越来越厉害. 十大赌博平台排行榜又给我开了抗生素. 当我的十大赌博平台排行榜检查我的耳朵时,她没有看到任何肿胀, 但是耳朵的疼痛变得难以忍受. 我从来没有这么痛过.
在我的内心深处, 在那一刻,我就知道出了严重的问题, 但我不确定那是什么. I decided to see another doctor, who referred me to an ear, nose and throat specialist. 我想他马上就知道他看到的可能是癌细胞, 因为他坚持要马上做活检.
决定进行舌骨切除术难吗?
我的十大赌博平台排行榜认为我的癌症非常严重,而且已经进入晚期, 这个手术, 然后是放疗和化疗, 能给我最好的生存和康复机会吗. 这是我个人的决定,但我希望能有最好的生存机会.
Many people think it's going to be the end of their lives if they get the surgery and choose to try chemo and radiation first to save their tongues – even though this isn't recommended and most often doesn't work. 如果你最终还是要做手术的话, there can be a lot of complications with surgery after radiation – your skin and blood vessels don't heal as well. Also, the cancer may essentially never leave your body and end up metastasizing.
这是我感觉很强烈的事情. 我和一些病人成为朋友,因为他们走了这条路.
你能描述一下你在加州大学旧金山分校的手术吗?
我有三个外科十大赌博平台排行榜,他们是一个团队. They removed my whole tongue – due to the extent of the tumor they couldn't save any of it, 不幸的是. They split open my jaw, through my chin all the way down through the right side of my neck. It was extremely invasive, but they had to make sure the cancer had not spread anywhere else.
They then took tissue from my left wrist and upper arm area and used it to re-create a tongue. It's more of a passageway than a tongue like I had before, but it has some feeling to it. I can taste fairly well because there are taste buds all over your mouth, not just on your tongue. A lot of taste is through smell and mine must be excellent, because I still taste and enjoy food.
外科十大赌博平台排行榜过去常常做一个更大的类似于真实舌头的移植物, 但现在他们认为这对病人的饮食和说话没有帮助. The tissue doesn't have any musculature and can't move, so it just hinders the process.
我确实觉得加州大学旧金山分校的外科十大赌博平台排行榜救了我的命, and that the way they rebuilt me allowed me to recover from such a drastic surgery as best I possibly could.
从这样一个侵入性的手术中出来是什么感觉?
我好像浪费了两天时间. 我只是处于迷惘的状态.
When I woke up I was on a feeding tube, I had a tracheotomy and couldn't speak at all. 我在脸上做了引流以消肿, 但即使有排水管, 你的脸还肿到这里. 我的第一印象是,“哦,天哪.“你以为你会永远这样,但你不会. 如果你今天看到我,你几乎看不出来. 我有伤疤,但我没有毁容.
我在十大赌博平台排行榜住了13天. I actually told them I felt better than I really did, just so I could go home.
About three months after I got out of the hospital, we went on vacation to Mexico. It was so great to get out of my apartment and do something that felt good. 我不能完全入水, 但我会站在齐腰深的海水里,然后说, “Aaaaaaaah."
I want to stress that I was very fortunate to have an incredible network of family and friends who supported me. I don't think I would have done as well without them, especially my husband, Brian. 他是如此的亲切和体贴,在我最黑暗的时刻陪在我身边.
你是怎么学会不用舌头吃饭和说话的?
这是一个非常缓慢的过程. 我仍然觉得自己每隔几个月就会进步一次,尤其是在演讲方面.
手术后, I tried to eat as many different types of foods as possible before I started radiation treatment. The radiation causes quite a bit of discomfort in your throat and it completely kills your appetite. 我很高兴我在接受辐射之前练出了这些肌肉, 因为我真的有两三个月没吃东西了. 我所有的营养都是通过喂食管输送的.
一开始我和语言治疗师一起工作. The first thing they make you do is swallow water because it's the hardest – it's the thinnest liquid. 一旦你可以吞下水而不吸气, 然后你可以转向软性食物,比如苹果酱和酸奶.
你得饿了才会想要掌握饮食. 我瘦了很多,我需要从试管中获得营养, 但如果我喝得太多, 我没有吃固体食物的胃口. 这是一个艰难的平衡.
重新学会如何吃饭是我做过的最难的事情. 我真的在流汗. 我要花大约两个小时才能吃一口茶匙大小的食物. 这太令人沮丧了——我很饿! 在治疗期间,我减了10到15磅.
我现在什么食物都吃, although I need to be careful to take small bites and because of the radiation, 我受不了辣. Radiation essentially burns the inside of the mouth, and the tissue is still sensitive. 我喜欢吃辣的,但是太辣了,不值得.
重新学习说话怎么样?
一开始,我使用了腭下垂假体. It's something like a removable retainer, and the theory is it helps with the echo in the mouth. 很多人觉得它很有用,但我觉得它在社交上很尴尬. I couldn't eat with it in, I couldn't exercise with it in, and it was messing up my teeth. 我受够了拿进拿出. And I had to adjust to speaking both ways, with and without the prosthetic. 最后,我丈夫说:“你为什么不干脆别用它呢?"
我大约两年前停用了它. The best speech therapy for me has been getting out and interacting with the world.
你的演讲还在进步?
今年我真的在努力学习打电话. Anything phone-related, I used to avoid because it was just so painful to go through. 但我不想依赖别人为我做这件事, 所以我一直在强迫自己, 让对方有耐心. 我觉得在过去的八个月里我取得了很大的进步.
我正在找工作,一直在做电话面试. I tell the person that I have a bit of a speech impediment and if they can't understand, 请让我再说一遍, 没什么大不了的. 人们的反应很能说明问题. People really reveal themselves when they come across someone with an impediment.
Chemotherapy can harm fertility, but you were able to save your eggs before you started?
我觉得那是十大赌博平台排行榜们事后才想到的, 因为我比一般的病人年轻得多. 但当他们提起这件事时,我说:“是的,我想要一个家庭!“幸运的是,我们有足够的积蓄来支付这笔费用. Between the surgery and starting chemo and radiation, I had my eggs harvested and frozen at the 加州大学旧金山分校生育保护项目.
我知道另外两个患舌癌的女人现在不能生育了. 一个在化疗和放疗前没有保留生育能力, 另一个人知道这件事,但没有资金. 我希望更多的人知道保存生育能力, 而且对于患过癌症的人来说,仓储费是打折的.
你现在的预后如何?
They feel that with the amount of time that's gone by, the cancer most likely won't come back. 这对于这种类型的癌症来说是非常非常罕见的. I stopped having biannual MRIs about a year ago, and now I just have checkups.
你在病人教育和倡导网站做志愿者. 你为他们做什么?
Oralcancerfoundation.org (OCF) was a lifesaver for me when I was first diagnosed and went through treatment. 我很害怕. 任何危及生命的疾病当然都是可怕的, 但这种特殊类型的癌症影响着日常生活的方方面面. 我们都认为吃饭和说话是理所当然的,直到它们被妥协.
我是OCF的患者倡导者. 我在论坛上回答问题, I meet and communicate with other patients who have gone through or are going through the same surgery and treatments I had. 能回馈给一个给了我很多帮助的组织真是太棒了. 该网站是研究的宝贵资源, 对患者的认识和支持, 家庭和照顾者.
当你还是病人的时候OCF是怎么帮助你的?
我是一个绝望的人,尤其是刚开始的时候. 我不知道会发生什么. 十大赌博平台排行榜们,他们肯定会在需要知道的基础上告诉你. 所以当我在网站上读到这些病人的故事时, 形势的严重性真正显现出来了. 我想,“我要怎么忍受这一切? 我以后的生活会怎样?“这对我来说是完全不可思议的. 我睡不着,因为我太害怕了. But if you read about it enough and hear about it enough, you get desensitized. There are also blogs on the site, and I started one immediately after my diagnosis.
现在,当我和志同道合的人交流时, 我告诉他们, “只是想让你知道, 我现在的生活很好. 事情是这样的."
这很好. 我帮助过很多人. 我(在生病的时候)对自己承诺,如果我能挺过去, 我必须以某种方式回报他们. 我觉得这是我的贡献.
你会给面临可怕健康问题的人什么建议?
把一只脚放在另一只脚前面. 不要过多考虑最终的结果. Just try to deal with how you're feeling that day, emotionally and physically.
在这个过程中, 我认为, “我要怎么工作呢?, 我要怎么吃呢, 我将如何在这个十大赌博平台排行榜上发挥作用?“但我一直在努力. I definitely failed many times and I had my bad days, when people were rude to me or insensitive. 但我也有过美好的日子. 人们的善良和同理心让我感到惊讶.
Talking on the phone, or everything I've relearned, at first seemed so unattainable. If you told me six months ago that I'd be doing phone interviews, I would have said you're crazy. 试一试,慢慢来,看看你会怎么样.