Theresa Maschke

Mi marido, Joe, era diagnosticado 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 signo o síntoma, 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.

Su gastrointestinal también creía que Joe tenía hemorroides internas, pero en un "exceso de precaución", programó a Joe para un colonoscopia. Mientras la asistente de programación de citas estaba anotando a Joe en el calendario para una colonoscopia en septiembre, el gastroenterólogo de Joe salió y le aconsejó que reservara a Joe para antes de sus vacaciones previstas para una colonoscopia el 14 de agosto, cosa que hizo.

La preparación de Joe fue brutal y tenía mucho dolor. Después de su colonoscopia, me llamaron para que volviera a la sala de recuperación (lo que debería haber sido una clara señal de que algo iba mal, pero no me di cuenta en ese momento), y estuve bromeando con la enfermera y con Joe.

Su gastrointestinal entró, nos rodeó con una cortina de tres lados para que tuviéramos intimidad y nos dijo: "Tenéis... un tumor en el recto, 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.

Nuestra niños 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.

A la 1 de la madrugada, envié un DM a una amiga enfermera oncóloga. Le pregunté "¿Qué hacemos??" 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 quimioterapia tratamiento.

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

Finally in June 2019, Joe had cirugía 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 ileostomía.

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

La rápida intervención de Joe le salvó la vida. También estoy muy agradecida a su equipo de tratamiento, que lo ingresó con tanta rapidez y eficacia. Son héroes que salvan vidas.

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 efectos secundarios 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.

Si tiene sangre en sus cacas o en su cuenco: Obtener el colonoscopia! No esperes semanas, meses o incluso años deseando que desaparezcan los síntomas o "esperando que no sea nada". 

My personal experience is this: You would far prefer the 24 hours of being uncomfortable and inconvenienced by the preparación de la colonoscopia 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.

Fuimos día a día. Después de muchas noches sin dormir, le entregué el diagnóstico a Dios y le dije: "Sé que no tengo ningún control sobre esto". Fue muy difícil porque soy una maniática del control, pero también fue muy liberador porque sabía que no tenía ningún control. Pero mantuve una actitud positiva. mentalidad. Era todo lo que podía hacer. Tenía que aferrarme a la esperanza y creer que "esto también pasará".

Fue un momento aterrador en nuestras vidas. Me aseguré de que los niños tuvieran terapia y alguien con quien hablar. No cuidé bien de mí misma. Puse todo mi tiempo y energía en los demás y en asegurarme de que estaban bien, pero las ruedas del autobús (¡yo!) se estaban cayendo. Es muy importante que cuidadores cuidar de sí mismos.

No fue hasta unos años después del diagnóstico de Joe cuando nos dimos cuenta del poder del contar nuestra historia. Una de las lecciones de vida más gratificantes que aprendimos fue a través de Equipo de Defensa de la Lucha contra la CDN. Si no hubiera sido por ellos, Joe y yo nunca habríamos sabido que podíamos testificar ante el Senado y la Asamblea de Nueva Jersey y el valor de nuestra historia. Presentarnos en Trenton y contar nuestra historia ayudó a que se aprobara el proyecto de ley sobre el cribado del cáncer colorrectal. ley. Mi hija y yo también hemos contado nuestra historia a los miembros del Congreso en el Call-on Congress de los dos últimos años.

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.

El único resquicio de esperanza del diagnóstico de cáncer colorrectal fue la increíble comunidad que no habríamos conocido de otro modo. Encuentra a tu gente Comunidad de Campeones y encontrar apoyo Reuniones de recursos!