By Lizzie Knothe
My name is Lizzie Knothe, and I am one of the newest additions to The Lily Project. I recently relocated from Wisconsin to León, Nicaragua with my boyfriend Alex to join Lily’s newest mobile clinic team and assist with blogging, photography, social media, and transportation. My motivations for the next year of work with Lily are personally rooted.
For as long as I can remember, the words “breast cancer” have been used regularly in my family. Talks of screenings, treatments, genes and scares were commonplace. Many women in my family have undergone invasive biopsies, single and double mastectomies, reconstructive surgeries, and cancer treatment therapy. Women in my family have lost their fight to breast cancer, and women in my family have won. My aunts, cousins and grandmother bear the scars of breast cancer, both physically and emotionally. I look at my family members, and I am
proud of their resilience and ecstatic for their victories.
In my head, however, there remains a consistent whisper; am I next?
The thought of breast cancer leaves me feeling powerless at times. It has me asking questions like “why was I born a woman?” or “why was our family cursed with these genetics?” I’ve avoided certain products apparently linked to cancer only to roll my eyes and think, “what’s the use?” But, I know now; prevention is the use. My family’s experiences have made me vigilant, their struggles have motivated me to proactivity, and as a result, I am much more likely to take preventative measures for my health. I asked doctors about mammograms and my family has undergone genetic testing before I could drive. I am much more likely to self-exam, seek out regular physicals, and start mammograms early. I may not have 100% control over breast cancer, but I am defending myself the best I can.
When I first learned about The Lily Project, I began researching cervical cancer and found many similarities between the two diseases. Both of these cancers target women in their early 40s to mid 50s, both can display few to no symptoms, and both require overt bodily awareness and professional screenings in order to prevent and detect. The major difference is cervical cancer can be totally prevented. Virtually all cases of cervical cancer start as Human Papilloma Virus (HPV), and can be avoided through the use of contraceptives and receiving regular Pap exams. These actions can completely diminish the chance of contracting cervical cancer or at least help detect pre-cancerous cells early enough for removal or treatment. Despite its preventability, and although the cervical cancer death rate has dropped more than 50% in the last decade, it remains the number 1 killer of women in Nicaragua. That’s where The Lily Project comes in.
The Lily Project is an amazing, holistic model of public health. Combining cervical exams with education and counseling, The Lily Project combats cervical cancer in an informative, sustainable and economically sound way. In the few weeks I have been in Nicaragua, I have learned what efficient, culturally sensitive, women-centered health assistance looks like. I am so excited to see what The Lily Project has in store for the next year, and work with the amazing individuals here at Lily who, like me, have witnessed women in their lives struggle with female-targeted cancers.
Alex and I have the amazing opportunity of being part of the brand-new León team, and watching its impact reach communities will be truly incredible. Maybe I will not see breast cancer become truly preventable, but knowing the power of awareness and regular exams can be enough to save a life. In the mean time, it is time to band together and continue supporting The Lily Project’s efforts to stop the spread of this preventable disease and take steps to ending cervical cancer as the #1 killer of women in Nicaragua.
Mi nombre es Silvia Fuentes y soy sobreviviente de Cáncer Cervicouterino; cuándo me diagnosticaron en Mayo del 2014 no estaba trabajando y por tanto, no tenía seguro médico. Ante esta situación mi familia y yo teníamos dos opciones: tramitar mi atención a través del Sistema Nacional de Salud o asumir todos los gastos de manera privada.
Optamos por la primera opción; recuerdo tenía mucho miedo. No sabía si tendría que esperar mucho tiempo para ser atendida...y por lo que había escuchado, en la lucha por el cáncer el tiempo vale oro.
Fui referida al Bertha Calderón, que es el hospital de referencia nacional para la mujer; allí conocí a muchas mujeres de diferentes zonas de mi país. Mujeres que al igual que yo, querían vivir. Con ellas, pasé varios días esperando la hora de nuestras respectivas consultas o exámenes; cada una tenía una historia diferente. A unas les habían detectado su cáncer a tiempo y otras ya avanzado; pero la mayoría teníamos en común, que no nos habíamos hecho el examen de Papanicolaou en mucho tiempo. Algunas por vergüenza, otras por que no nos gusta ir al ginecólogo al igual que no nos gusta ir al dentista, otras porque no lo creíamos necesario hacerlo anualmente y otras porque les quedaba muy lejos los lugares donde los realizan; con ésta última opción no me pude identificar, dado que vivo en la ciudad y tengo todas las facilidades para acudir a cualquier hospital público o privado y aún así no lo aprovecho. Eso me dolió en el alma, constatar lo difícil que es para muchas personas en mi país, el recibir atención médica.
De manera paralela a la gestión que hice en el servicio público de salud; solicité autorización ante el Instituto de Seguro Social de continuar pagando el seguro de manera personal y recibir atención a través del Programa Oncológico del Seguro. Esta solicitud fue aprobada y en Junio inicié mi tratamiento en otro hospital. Dios me dio una oportunidad a través de personas que me apoyaron incondicionalmente y yo me comprometí a retribuirle apoyando a otras mujeres que estén pasando por la dura situación de aceptar que tienen cáncer y motivarlas a que sean valientes para enfrentar su tratamiento.
En el 2015, sintiéndome sana, con fuerzas y con mucho ánimo; buscando como cumplir mi compromiso con Dios. Encontré por las redes sociales esta nueva iniciativa que trabaja en la prevención del Cáncer Cervicouterino en comunidades rurales de mi país. El equipo de Lily Project trabaja de manera coordinada con el Ministerio de Salud, liderezas y lideres comunitarios así como con organizaciones locales y se traslada a comunidades de difícil acceso. Aún me emociono al recordar como me puse en contacto....recuerdo que les escribí al correo, quería conocerlos.... tenía que ser parte de este proyecto.
Así fue como me sume a esta causa, mi causa!!!. Las veces que he acompañado al equipo a las comunidades, he disfrutado estar con las mujeres que acuden a realizarse su papanicolau; hablar con ellas, compartirles mi historia, escucharlas. Darles ánimo y decirles que todo pasa. Que hacen lo correcto de revisarse por amor a ellas y a sus familias.
En esos momentos o a través de las fotos que el equipo comparte en la página de The Lily Project, ver a madres que llegan con sus hijas o sus nueras, ver a niños que juegan mientras esperan a que sus mamas, hermanas o tías sean atendidas.....siento la vida, siento el amor y le doy gracias a Dios por regalarme una segunda oportunidad para vivir a plenitud.
Silvia Carolina Fuentes
By Silvia Fuentes, Board Member (Translated).
Hello - my name is Silvia Fuentes, and I'm a survivor of cervical cancer. When they diagnosed me with the disease in May 2014, I had not been working and I had no medical insurance. My family and I had two options: take the treatment that was offered through the national health system or pay for treatment privately.
We decided to go with the first option. I remember I was so afraid. I did not realize that I would have to wait so much time to be attended to when I arrived to start the treatment. I had heard that fighting cancer in the national health system was like trying to survive against all odds. I was referred to Bertha Calderon, the hospital in Managua that treats cancer in women. There I met many other women from around Nicaragua also fighting to stay alive. With these other women, I waited many days going through various exams and appointments with doctors. Every woman had a different story to tell. Some of the women were fortunate and had detected the cancer early, but others were in advanced stages. However, one thing we all had in common: we had not had a regular Pap exam. Some for shame of the exam process and others because they just didn't like visiting the gynecologist, others because they didn't think the exam was important, and others because they lived in rural communities where the exam was not available. It was hard to identify with the ladies in the rural communities that did not have access because I lived in the city where I had all the resources, public & private, and I still did not take advantage of them. This made me sad as I realized how I had an opportunity that many women in my country do not.
While waiting for treatment in Bertha Calderon, I submitted a request to be transferred to a better hospital based upon my previous job and the payments I was making to the social medicine at that time. The request was approved in June, and I started a better treatment program in a different hospital. God gave me an opportunity through this change as the treatment was much better, and I promised Him I would repay it by helping other women in similar situations. I was determined to encourage other ladies to be strong and courageous in light of the circumstances and fight the disease with the treatment available.
In 2015, I was declared free of the cancer, and I began looking for opportunities to fulfill my promise to God. Through social media, I found out about a new program focused on delivering health services to women in rural communities in Nicaragua called the Lily Project. The Lily Project Team was working with the health ministry, local leaders and established organizations to deliver their services to areas that were difficult to reach. I still remember how excited I was when I reached out to Lily, and I explained I wanted to be a part of the work and help the women in need.
This is how I came to The Lily Project; a cause I'm so passionate about, my cause! The times that I've participated with the Lily Team in the communities, I've truly enjoyed being with the women and helping them realize the value of having a regular Pap exam. I talk with them, share my story, and I listen to them. I emphasize that this is for their health and for the love of their family.
In these moments as I see the work of The Lily Project through the pictures on the website or via social media, I see moms and grandmothers arriving with their daughters and granddaughters, I see kids playing while their moms, aunts and sisters are examined, and I feel life. I feel love. I give God thanks for giving me a second chance at life, and I choose to live it to the fullest!