Each month, the Cancer Policy Insitute profiles advocates who have been engaged in advocacy in their home state, their community, with elected officials, and more. Read on to learn more about our featured advocate for the month of October and her passion to advocate for and destigmatize lung cancer. If you are interested in learning more about policy, advocacy, and ways to get involved, sign up to be a part of the Grassroots Network!
Yovana Portillo, Phoenix, Arizona
Tell us a little bit about yourself.
In April of 2016, I was working a fulltime job, I was an active and healthy 34 year old in a relationship. I had applied and been invited to serve in the Peace Corps and I was a passenger in a car accident; from which an ER visit led to an incidental finding of a mass on my left lung. I had been living a pretty “normal” life and was asymptomatic. This ER visit led to referrals to a pulmonologist and a thoracic surgeon as well as an array of medical procedures such as, testing for Valley Fever, CT Scans, a PET Scan and a CT Guided Biopsy. When the results confirmed cancerous cells and I received the diagnosis over the phone, because I lived 2 hours away from my doctors, I was in shock and denial and didn’t correlate “cancerous cells” which was the term my surgeon used with lung cancer. My sister was the one that pointed it out to me when I relayed the phone call with the surgeon, but it was not until I went into the office for a follow-up appointment to go over my options and I received a pamphlet for lung cancer that I came to realize that I indeed had the disease. I had lung cancer, the last medical condition I ever thought I would encounter in my lifetime because I had never smoked and I believed the stigma that had been imbedded in my brain since childhood. “Smoking leads to Lung Cancer”, so I found it a little ironic, that I had played by the rules and yet still had gotten this disease. The surgeon recommended surgery to see how bad it was, and nine days later I had a lobectomy on the lower lobe of my left lung. The tumor was contained in that lobe and it was labeled as a NSCLC Mucinous Adenocarcinoma and classified at a Stage IB. I was referred to an Oncologist and because of my age, I was 35 by the time I received my diagnosis and underwent surgery. I was told the side effects of chemo or radiation would be more harmful than beneficial and they were not recommended for me. But, because of my age, it was recommended that I get genetic testing to see if it was genetic, and since it did not come back as being genetically caused then my siblings did not have to be tested. But due to the findings of the genetic testing I now see a Dermatologist once a year as a precautionary measure because the genetic testing did find a gene mutation for Basal Cell Carcinoma. I also see my Pulmonologist once a year and have a 6 month CT scan and visit with my Oncologist to review the results then as well.
Before my surgery I moved back to Phoenix, AZ to be closer to my medical team. I also ended the relationship I was in before my surgery, because he made it very clear that I was no longer what he wanted after my diagnosis and this made me realize that he was no longer what I needed. The Peace Corps retracted their invitation after my diagnosis and surgery. And life was a little rough, I was heartbroken, I was not able to be as active as I had been previously, and a childhood dream faded into the background. And then I found my second home, the Cancer Support Community of Arizona.
How did you get connected with the Cancer Support Community?
I thought I was only going to be out of work for two weeks after my surgery. But a couple of weeks after my surgery I found myself at home attempting to recover physically, when it hit me mentally. The diagnosis, the surgery, the fact that my life would have to be altered, I was missing half of a lung after all. And I realized I needed to find a support group, meet and talk to others who had gone through or were going through the same thing I was experiencing. I googled “Lung Cancer Support Group Phoenix, AZ” and the Cancer Support Community of Arizona came up first on my search. I followed the link, made a phone call and scheduled an appointment for a Newcomer Meeting and the rest is history.
Did you have experience with advocacy in any capacity before joining CSC? (e.g. legislator meetings, hosting educational events, writing letters or calling, writing pieces for media outlets, posting on your personal Facebook, sharing information with your community, etc.)
The extent of my Advocacy prior to joining the CSC, was very minimal and consisted of simply reminding everyone to vote during the elections on my personal Facebook page.
In what ways have you been involved with advocacy with CSC?
I have been involved in Advocacy with the CSC by being the keynote speaker at their Annual Trivia Night Fundraising event. I am also one of their Outreach Ambassadors and volunteer at Newcomer Meetings, tabling events in the community and assist as much as I can whenever they reach out to me. Most recently I have participated in their collaboration with the Herberger Theatre and had a plaster mask made of my face, which will be used as part of an Art Exhibit at a later date.
But my advocacy extends beyond the CSC, as I am in contact with local state legislators and together we are working on bringing more lung cancer awareness to everyone in the state of Arizona alike. I use all of my social media accounts as platforms to advocate for lung cancer. I participate in any activity that is lung cancer related. I have participated in lung cancer walks for LUNGevity’s Breathe Deep Phoenix 5k, Lung Force Phoenix 5k, Lung Force Tucson 5k, and the Bonnie J Addario Foundation 5k. I am part of the Committee for the Breathe Deep Phoenix 5k which is part of LUNGevity, the nation’s leading lung cancer research non-profit. I have been to DC twice, once with LUNGevity’s HOPE Summit and the Life and Breathe Rally which took place a day before the Summit and a second time with the Lung Cancer Alliance. On both of these visits I had the opportunity to meet with the offices of my local congressmen, congresswomen, and senators. The most rewarding part of these visits was when two of the congressmen agreed to co-sponsor the Women and Lung Cancer Research and Preventative Services Act of 2018 (HR4897).
I have been interviewed by a local news station to share my story, they were interested in learning how a car accident led to such a major diagnosis. I have also been interviewed by Lee Silversten for the WeHaveCancer Podcast, to share my story regarding my diagnosis, how I coped with it and on life after a cancer diagnosis. I belong to a Young Adult Catholic Group in the Diocese of Phoenix and was asked to share how my prayer life helped me through my diagnosis at their most recent semi-annual retreat.
Recently, I was invited by The Chris Draft Foundation to participate in their #SurvivorAtEveryGame and #TacklingLungCancer collaboration with the NFL and attended a Thursday Night Football game hosted by the Arizona Cardinals.
Last but not least I am currently training and raising funds for my first ever marathon as part of Team LUNGevity’s charity run with the Marine Corps Marathon that will be taking place on October 28, 2018.
Honestly, I think any opportunity to share my story serves as a way to advocate for my cause, and I take it. I had never met a lung cancer survivor prior to my own diagnosis, so I want people to remember and to know that lung cancer can happen to anyone. I am the face of lung cancer and if anything, I can create a ripple effect in showing that it can happen to anyone and yet, if caught early enough, anyone diagnosed can still continue to live a life pretty close to the life they had previously.
Is there one issue you are particularly passionate about?
I am certainly passionate about increasing research funding and ending the stigma associated with lung cancer alike. I would like for the current population and future generations not to fall victim to the stigma associated with lung cancer, because it is a fallacy, and I am living proof that it can happen to anyone. I would like to inform the general public that in order to be a candidate for this disease, all you need is a pair of lungs.
What is one tip or piece of advice you’d like to share with others who are interested in becoming an advocate?
If you are passionate about what you are doing it will show in your conversations regardless of whom you are speaking to. Your story matters! And although you might think that one person may not be able to change the world, I can guarantee you that one person can take small steps and make small changes that in the end will definitely result in the bigger goal or bigger picture. Progress is progress. No matter the time or effort it takes. Knowledge is power, and no one knows your story better than you! Find your voice and use it for the change you want to see!
Tell us something fun about yourself—any hobbies, interests, or fun facts?
My favorite meal is brunch! I love quotes! Reading or listening to music by a window on a rainy day while drinking tea is perfection! My favorite punctuation mark is the exclamation point!!!
My faith is very important to me, and God has been great to me during my entire lung cancer journey. I enjoy spending time with my family and friends. I love being out in nature, and enjoy hiking as often as I can. I am a fan of yoga and practice it regularly. Running is something I came upon a few ago and enjoy it more than I thought I ever would. After my diagnosis and surgery I was not sure if I would be able to return to doing the activities I had enjoyed so much before. And I was also my biggest critic, because I knew what I had been capable of previously. But I learned to practice patience and allow my body time to heal and realized that anything is possible and anything can be accomplished. I have learned to listen to my body and if something does not feel right I might need to rest or modify the activity. My body has proved to be so resilient through it all, that it amazes me all the time and I am just living my life as God has planned for me.