Along with the many roles I have under the umbrella of Lymphie Strong, I currently serve as a volunteer for the Lymphatic Education & Research Network (LE&RN), Texas Chapter. In that capacity, I have met and admired many people from across the country. One of those people is Angela Marquez. Known on Instagram as @funky_lymphedema, Angela is an amazing woman and her survivorship story is so incredible. She does so much as Co-Chair of the LE&RN Chapter of Colorado along with living her daily life full of inspiration and positivity.
Our cover photo features the 2019 Manitou Incline – a personal accomplishment for Angela. She used to hike it and had not tried it since having LE. She recently accomplished the 2,744 steps up, with gains of over 2,000 feet in elevation and grades of 45 to 68 steepness in some places. There is no stopping her!
It is my pleasure and honor to highlight her story as part of National Hispanic Heritage Month (Sept 15 – Oct 15) as a fellow Latina, and as a dear friend.
Tell us about yourself and your hobbies.
I am a proud first-generation Mexican-American! My father moved from Mexico City to Kansas, where he met my mother. I was born and raised in Kansas, and I have one sister and two brothers who all live in Kansas City. I live in the beautiful state of Colorado and am married to Aaron.
We have three grown children and a grandson who will turn one in November! I work as a Sales Representative for General Mills, Inc. I enjoy all things fitness, photography, being with family and friends and advocating for LE-while serving as a Co-Chair for the CO Chapter of LE&RN!
Briefly tell us your patient story
I have bi-lateral secondary lymphedema in my legs due to cervical cancer treatment in 2007. I underwent a radical hysterectomy, six weeks of chemotherapy, thirty-five rounds of radiation and had thirty-six lymph nodes removed. However, my lymphedema presented in March 2016, nine years after being treated for cervical cancer, when I noticed swelling in my left ankle, which within a week had spread through my entire leg. I was warned of lymphedema by my cancer doctors, but this never entered my mind. I had shingles in my left thigh in January of 2016, which I believe contributed as a trigger for my LE.
After pushing for answers through a series of emergency room and various doctor visits, my primary care physician referred me to Dr Rajebi, an interventional radiologist. Simultaneously, in the same week I was diagnosed with May-Thurner Syndrome which is an anatomical condition in the leg when the left iliac vein is compressed by the right iliac artery. My iliac vein was 50 percent closed, which would require a stent placement to open it and restore blood flow and reduce the risk of a life-threatening blood clot. And then Dr. Rajebi told me “I think you may have lymphedema as well”.
I burst into tears. I thought, how can this happen now, nine years after my cancer? I survived cancer and now this! I was trying to process two diagnoses – one could be treated with stent placement in the pelvis; the other, incurable. It was at this time I was referred to Vicki Ralph, my lymphedema therapist, and I began complete decongestive therapy in the hot Colorado summer.
I saw Vicki three times a week for seven weeks for manual lymphatic drainage therapy and spent up to 22 hours in my bandages. It paid off as I would see a reduction in my leg weekly. I continue to see Vicki every month as maintenance.
I had Vascular Lymph Node transfer (VLNT) surgery with Dr. Dayan in October of 2017 and will return for my two year follow up this November.
What would you say to another person who just found out they had LE?
This is something that happens regularly, whether it is via social media or in person, people reaching out to me asking questions about LE. First, I tell them they are not alone, and there is a community of people out there to support them on whatever level they want to be involved, i.e. the Lymphie Strong groups, Instagram, etc. I also refer them to the LE&RN website for a wealth of information.
I tell them not to compare themselves to others because as hard as this is, each case of LE is different; this is not a cookie-cutter disease. I preach the gold standard of care, CDT, MLD, compression, exercise, skincare and diet.
What is it like to battle surgery/hospitalizations?
I wish this were something I knew nothing about, but last September, I was admitted to the hospital with severe sepsis. I say this all the time – we have to be our best advocates. I had a temperature of 104.5, very low BP and fast heart rate. The ER team was amazing; they knew about LE and cellulitis and began pumping me with fluids and meds. Once I was admitted to the hospital, I sensed my team of doctors were perplexed on how to treat me. I had no visible cuts, scrapes or tears on my skin which added to the mystery. I was told by one of the doctors I had the most “impressive” case of cellulitis he had ever seen.
The infectious disease doctor ordered a ‘Ted’ hose for me to wear. I told him I was not going to wear it as I still had a fever and my leg was fire red and bigger than when I was diagnosed with LE. It took three days for my fever to break. He said wearing the Ted hose would not make me worse and would help with my swelling. I told him everything I have read says to not wear compression with cellulitis until fever breaks and I have custom compression and bandages that will help with swelling. We agreed to disagree. When my fever finally broke I compromised and put on my Tribute night garment. It was because I was my own advocate that I was able to convince the medical staff of my best treatment options and protect my leg and health.
Specifically during National Hispanic Heritage Month, why is it important to spread awareness?
LE does not discriminate, and my LE is from my cervical cancer treatment. Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S. according to the American Cancer Society and Center for Disease Control (CDC). There is little overall knowledge on LE in general, although I think we have come farther than when I was diagnosed in 2016. I want to elevate the awareness and bring action to this disease.
Is there a particular story you’d like to share involving living with LE?
I am humbled and touched by the people who reach out to me and put themselves out there. I want to be a voice and inspiration for all those who suffer from LE and LD diseases.
Tell us your final message.
We all have a story to tell and there is power in telling your story. My story does not make me special. What it does do is empower me to share and bring awareness to a disease that affects millions of people and if that helps one person then I’ve made a difference!
