特里萨-马斯克

我的丈夫乔 被诊断为 with stage IIIb rectal cancer at age 47 in August 2018, following a colonoscopy. He is a firefighter, and at the time, he was a part-time iron worker.

He was one of the healthiest people I knew: healthier than people 20 years younger than he was at that time.

Joe had been having 征兆, rectal bleeding and at times constipation, but he believed he had internal hemorrhoids. He was becoming more concerned, so he went to his primary care who then referred him to a gastroenterologist in late July 2018.

Joe is not a guy who goes to the doctor often, and yet he made and attended this appointment without me having a clue that anything was wrong.

他的消化内科医生也认为乔患有内痔，但为了 "谨慎起见"，他为乔安排了一次检查。 结肠镜检查.当排期助理正在为乔安排 9 月份的结肠镜检查时，乔的消化内科医生走了出来，建议她在乔计划休假前为他重复预约 8 月 14 日的结肠镜检查，她照做了。

乔的术前准备工作非常残酷，他疼得死去活来。结肠镜检查结束后，我被叫回了恢复室（这本应是一个明显的信号，但我当时并没有意识到），我和护士还有乔开着玩笑。

他的大兵走了进来，为了保护我们的隐私，用三面帘子把我们围了起来，然后说："你们有 直肠肿瘤, and it's most likely cancer." Joe and I cried, and I immediately whipped out a notebook to start writing things down. I knew I wouldn't remember details we discussed because of the trauma of the news. I needed to document them. The nurse told us she would take notes. She told us to listen and ask questions.

The GI was fantastic. We received the worst news of our lives, and it was devastating.

I asked Joe's GI, "Where would you send someone you love to be treated?" He didn't have the surgeon's name handy, but he called Joe that afternoon with the name of the surgeon, which we would use to build Joe's treatment team.

我们的 孩子们 were 15, 13, and 11 at the time. We told them immediately after the colonoscopy that Joe most likely had cancer. We cautioned them to not Google anything about it. We promised we would be transparent and share all news we received as we received it.

凌晨 1 点，我给一位肿瘤科护士朋友发了一个 DM。我问她"我们该怎么做?" and "Where do we start?" She told me we needed bloodwork, scans, an a surgeon, oncologist, and radiologist. She was a tremendous help, especially as I felt devastated, overwhelmed, scared, and alone.

Within a week, Joe had had bloodwork, scans, met his surgeon.

Within 10 days, he had his team assembled and met with all of them.

Within three weeks, Joe had his port installed and had his first 化学治疗 治疗。

Joe had 12 chemo infusions over about six months. He had 5FU. After about a month break, he had a month of 辐射 with chemo pill.

Finally in June 2019, Joe had 外手术 to remove his rectum. He received an ileostomy, and the thought of needing one both scared and disgusted him. I told him it was lifesaving and that he needed that 回肠造口术.

On July 2, 2019, Joe was declared no evidence of disease (NED). He had his reversal surgery toward the end of August 2019.

乔的快速 GI 救了他的命。我也非常感谢他的治疗团队，是他们迅速有效地为他进行了治疗。他们都是救人英雄。

I would love to say, "And we lived happily ever after." But the fight never ends. Joe is now five-years cancer free, but the 副作用 of his rectal cancer and treatment will be with him for the rest of his life. He has LARS and neuropathy.

We would like to believe he has a good 30 to 40 years of life ahead of him, but many days are really difficult.

There is no "new normal." There's just learning to cope with the hand you've been given.

如果您的大便或碗里有血迹： 获取 结肠镜检查! 不要等待数周、数月甚至数年，希望症状消失或 "希望没什么"。 

My personal experience is this: You would far prefer the 24 hours of being uncomfortable and inconvenienced by the 结肠镜检查前准备 than you would be undergoing chemotherapy, radiation, surgeries, and exams and constant monitoring for the rest of your life if you prolong getting symptoms checked. Side effects also last a lifetime.

Colorectal screening really does save lives.

Also, we were transparent with our kids. We did not want them Googling anything related to Joe's diagnosis and treatment.

Joe's doctor's told him, "We are treating Joe as an individual." That's what we told our kids. We didn't want to think of Joe as a statistic, and I didn't want anyone to mentally go down that path.

我们一天一天地过。在无数个不眠之夜后，我把诊断书交给了上帝，并说："我知道我无法控制这一切。这句话超级难，因为我是一个控制狂，但同时也非常自由，因为我知道我无法控制。但我保持着积极的 定势.我只能这么做。我只能抱着希望，相信 "一切都会过去"。

在我们的生活中，这是一段可怕的时期。我让孩子们接受治疗，找人倾诉。我没有好好照顾自己。我只是把所有的时间和精力都投入到其他人身上，确保他们一切都好，但这辆公共汽车（我！）的轮子却掉了下来。重要的是 护理人员 自己照顾自己。

直到乔的诊断结果出来几年后，我们才意识到了 讲述我们的故事.我们学到的最令人欣慰的人生经验之一是 打击儿童权利委员会宣传团队.如果不是他们，乔和我永远不会知道我们可以在新泽西州参众两院作证，也不会知道我们的故事有多大价值。出现在特伦顿并讲述我们的故事帮助我们通过了大肠癌筛查法案。 法学.在过去的两年里，我和女儿还在 "呼唤国会 "活动中向国会议员讲述了我们的故事。

Something members of Congress need to know is that we need a dedicating research funding stream and research program (Congressionally Directed Medical Research Program) for colorectal cancer within the Department of Defense (DoD). Too much valuable research is being left on the table. Colorectal cancer is a devastating disease and without research, there aren't additional treatment options. We need to fund researchers so they can make monumental and lifesaving progress in the fight against colorectal cancer.

诊断出结直肠癌后，唯一的一线希望就是我们遇到了这个了不起的社区。寻找你的朋友 冠军社区 并找到支持 资源见面会!