Life After Tongue Cancer and Total Glossectomy

四年后, 布朗没有癌症，而且, unlike many patients who undergo total glossectomy, 能听懂吃饭和说话.

你是怎么发现自己得了舌癌的?

A small sore appeared on my tongue when I had a sore throat. 我用了抗生素治疗喉咙痛，但在喉咙痛消退后，那个斑点仍然在那里. I then started to have ear pain and the sore got larger. 十大赌博平台排行榜又给我开了抗生素. When my doctor looked in my ear she didn't see any swelling, 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, I knew at that point that something was terribly wrong, 但我不确定那是什么. 我决定去看另一位十大赌博平台排行榜，他把我介绍给一位耳鼻喉科专家. I think he knew right away that what he saw might be cancerous, because he insisted upon a biopsy right away.

Was it hard to decide to go ahead with a glossectomy?

My doctors felt that my cancer was extremely aggressive and advanced, 这个手术, 然后是放疗和化疗, would give me the best chance of survival and recovery. It's a personal decision but I wanted the best chance of survival possible.

许多人认为，如果他们接受手术，并选择化疗和放疗来拯救他们的舌头，这将是他们生命的终结——尽管这并不被推荐，而且大多数情况下都不起作用. 如果你最终还是要做手术的话, 放疗后的手术可能会有很多并发症——你的皮肤和血管不能很好地愈合. 此外，癌症可能永远不会离开你的身体，最终会转移.

这是我感觉很强烈的事情. I've befriended patients who passed away because they went down that path.

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. 他们切除了我的整个舌头——由于肿瘤的范围，他们一点也救不了, 不幸的是. 他们劈开了我的下巴，从我的下巴一直到我脖子的右侧. 这是极具侵入性的，但他们必须确保癌症没有扩散到其他地方.

然后，他们从我的左手腕和上臂区域取出组织，用它来重建舌头. 它更像是一个通道，而不是我以前的舌头，但它有一些感觉. 我的味觉相当好，因为味蕾遍布整个嘴巴，而不仅仅是舌头. 很多味觉都是通过嗅觉而来的，我的味觉一定很好，因为我仍然品尝和享受食物.

Surgeons used to do a larger graft that resembles an actual tongue, but now they think that doesn't help the patient with eating and speaking. 这些组织没有任何肌肉组织，也不能移动，所以它只是阻碍了这个过程.

I do feel that the surgeons at UCSF saved my life, 他们重建我的方式让我能从这样一个剧烈的手术中尽可能地恢复过来.

What was it like to come out of such an invasive surgery?

我好像浪费了两天时间. 我只是处于迷惘的状态.

当我醒来时，我正在用喂食管，我做了气管切开术，完全说不出话来. 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." You think you'll be like that forever, but you won't. 如果你今天看到我，你几乎看不出来. I have scars but I am not disfigured at all.

我在十大赌博平台排行榜住了13天. 我告诉他们我感觉好多了，这样我就可以回家了.

我出院大约三个月后，我们去墨西哥度假. It was so great to get out of my apartment and do something that felt good. 我不能完全入水, but I would stand in the ocean up to my waist and just be like, “Aaaaaaaah."

我想强调的是，我非常幸运，有一群支持我的家人和朋友. 我想如果没有他们，尤其是我的丈夫布莱恩，我不会做得这么好. He was so sweet and caring and was there for me in my darkest hour.

How did you learn to eat and speak without a tongue?

这是一个非常缓慢的过程. I still feel like I evolve every few months, especially with my speech.

手术后, 在我开始放射治疗之前，我试着吃尽可能多的不同种类的食物. 辐射会让你的喉咙很不舒服，还会彻底扼杀你的食欲. I was glad I developed those muscles prior to radiation, because I really didn't eat for two or three months. All my nutrition came through a feeding tube.

一开始我和语言治疗师一起工作. 他们让你做的第一件事就是吞下水，因为水是最硬的，也是最薄的液体. Once you can swallow water without aspirating it, then you can move on to soft foods like applesauce and yogurt.

You kind of have to be hungry to want to master eating. I had lost so much weight that I needed the nutrition from the tube, 但如果我喝得太多, I didn't have the appetite to work on solids. 这是一个艰难的平衡.

Learning how to eat again was the hardest thing I'd ever done. 我真的在流汗. It would take me about two hours to eat bites of teaspoon-sized food. 这太令人沮丧了——我很饿! I lost about 10 or 15 pounds during treatment.

我现在什么食物都吃, 虽然我需要小心小口咬，因为辐射, 我受不了辣. 辐射基本上会灼伤口腔内部，而口腔组织仍然很敏感. I love spicy food, but it burns so bad it's not worth it.

重新学习说话怎么样?

一开始，我使用了腭下垂假体. 它有点像一个可移动的固位器，理论上它有助于消除口腔中的回声. Many people find it helpful, but I found it really socially awkward. 戴着它我不能吃饭，我不能运动，而且它弄脏了我的牙齿. 我受够了拿进拿出. 我必须适应两种说话方式，不管有没有假肢. Finally my husband said, "Why don't you just not use it?"

我大约两年前停用了它. 对我来说，最好的语言治疗就是走出去，与十大赌博平台排行榜互动.

And you're still making progress with your speech?

This year I'm really working on talking on the phone. 任何与手机有关的事，我以前都避免，因为经历这些太痛苦了. But I don't want to be dependent on other people to do it for me, 所以我一直在强迫自己, 让对方有耐心. I feel I've made major improvements the last eight months.

I'm looking for a job and have been doing phone interviews. 我告诉那个人我有一点语言障碍，如果他们听不懂, 请让我再说一遍, 没什么大不了的. It's definitely very telling, how people respond. 当人们遇到有障碍的人时，他们会真正地展示自己.

化疗会损害生育能力，但在开始化疗前，你可以保存卵子?

I think that was kind of an afterthought for the doctors, because I was much younger than the typical patient. But when they brought it up I said, "Yes, I want to have a family!“幸运的是，我们有足够的积蓄来支付这笔费用. 在手术和开始化疗和放疗之间，我的卵子被采集并冷冻在 加州大学旧金山分校生育保护项目.

I know two other women who had tongue cancer who now can't have kids. One didn't have [fertility preservation before her chemo and radiation], the other knew about it but didn't have the funds. I wish more people knew about fertility preservation, and that the storage fees are discounted for people who have had cancer.

你现在的预后如何?

他们觉得随着时间的流逝，癌症很可能不会再复发了. That would be very, very rare for this type of cancer. 大约一年前，我停止了一年两次的核磁共振，现在我只做检查.

You volunteer with a patient education and advocacy website. 你为他们做什么?

Oralcancerfoundation.org (OCF) 在我第一次被确诊并接受治疗时是我的救命稻草吗. 我很害怕. Any kind of life-threatening illness is of course terrifying, but this specific type of cancer affects so many aspects of everyday life. We all take eating and speaking for granted until they're compromised.

我是OCF的患者倡导者. 我在论坛上回答问题, 我与其他已经或正在接受与我相同手术和治疗的患者会面并进行交流. 能回馈给一个给了我很多帮助的组织真是太棒了. The site is an invaluable resource for research, 对患者的认识和支持, 家庭和照顾者.

How did OCF help you when you were a patient?

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. The doctors, they tell you on a need-to-know basis, for sure. So when I read through all these patient stories on the site, the gravity of the situation really set in. 我认为, "How am I ever going to endure this? 我以后的生活会怎样?" It seemed just completely and totally unfathomable to me. I couldn't sleep because I was so terrified. 但如果你读得够多，听得够多，你就会变得麻木. 这个网站上也有博客，我在确诊后就开了一个.

Now when I communicate with people in the same boat, 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. I made a promise to myself [when I was sick] that if I get through this, 我必须以某种方式回报他们. 我觉得这是我的贡献.

What advice would you give to someone facing a frightening health issue?

把一只脚放在另一只脚前面. 不要过多考虑最终的结果. 试着处理你当天的情绪和身体状况.

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. 我确实失败了很多次，当人们对我粗鲁或麻木不仁时，我也有过糟糕的日子. 但我也有过美好的日子. People surprised me with kindness and empathy.

打电话，或者我重新学习的所有东西，起初似乎是那么遥不可及. 如果你六个月前告诉我，我会接受电话采访，我会说你疯了. Just try, take it slowly, and see how you do.