In July 2007, I noticed blood in my urine while at work and thought it may be from one of the juices I had at a meeting. The cranberry color continued throughout the day. That evening, I went to the local emergency room where they believed I had kidney stones. To be safe, the doctor recommended a CT scan. The CT scan showed a tumor, likely to be cancer, and I was asked to return to the urology department the next day. When trying to re-create the moments and minutes after hearing that statement, I admit that my memory is sometimes crystal clear and then other times it blurs: “Cancer. I’m sorry, did you just say CANCER?” There is no history of cancer on either side of my family.  My grandfather lived to be almost 101 and my parents are both active and in their 90s.

Ground zero. My journey begins. But in reality, the journey for cancer patients involves many others: spouses, children, extended family, friends, neighbors, medical staff, and fellow patients. Upon returning to the urology department after a sleepless night, the doctor informs me that I need surgery immediately, and I’m scheduled for a radical nephrectomy. The surgery was a success.  However, during surgery, metastatic disease was found in the surroun­ding lymph nodes and going up towards the chest and thoracic area. My optimal course of treatment was to consider taking Sunitinib to help keep the tumors in check and stop them from growing and spreading. I was informed I could (and should) get a second opinion. After searching the Internet (which can be frightening for the uneducated oncology patient), I went to see kidney cancer specialists in Philadelphia and New York. Both agreed Sunitinib was my best bet; however, the histology of my tumor was interest­ing. It appeared to have both clear cell and papillary characteristics. The US National Institutes of Health (NIH) was interested in the histology and agreed to take a look at my cell slides and come in for further analysis. Most of the NIH oncologists agreed on the side of Sunitinib, but one doctor made the case for surgery due to my age and overall good health. My wife and I decided to try surgery. After 13 hours on the operating table, a week in the intensive care, and several weeks in recovery, I went for my 3-month scans and got the all clear. Months later, there was no evidence of disease (NED). Now, more than a dozen years later, I have annual scans and still NED.

Early in my journey, one doctor shared some poignant advice: “Remember this; we are in the practice of medicine. We do not know everything.”

My advice: Take charge of your own situation. Take copious notes of every meeting and appointment.  Ask questions. Get answers. Seek out multiple opinions. Find kidney cancer specialists. There are dozens of types of cancers. Changes and breakthroughs are happening daily in onco­logy. Many doctors, even the best, cannot read up on everything going on in the cancer universe. Urologic oncologists are focused in this area. Search. Study. Ask. Join a patient group. Join Smart Patients. Talk to your doctors and nurses. Get involved. Only you can take charge of your situation.

A couple of years ago, a good friend of mine said, “After all you have been through, you need to give back.” That was the spark to support Kidney Cancer advocacy and work towards a cure.  I want to thank God and also share a sincere thank you to my wife, my family, and friends who have prayed for me and supported me during this time. I could not have done it without them.

Merlinda was an inaugural Board Member of KidneyCAN and a dear friend. She passed away in 2019 after battling kidney cancer for seven years.

Merlinda was an exceptional woman and a devoted follower of Jesus. Her love for her Savior and for people was evidenced in the way she conducted her life. She served people wherever she encountered them. From family and friends to strangers, she wanted others to know God’s love and care for them.

In her over 25 years as a nurse, she worked in Louisiana as an ICU nurse and as an organ procurement coordinator for LOPA. She also worked in Texas as an ICU and ER nurse. Additionally, she served as a Sunday School teacher for 2-3-year olds and was a part of a women’s mission group. She tirelessly supported her husband as Executive Director of Living Hope Ministries and eagerly loved the individuals that the ministry reached. Her beauty, elegance, and affable demeanor drew people to her with unbridled affection while her uncompromising belief in God’s truth often challenged them to a higher call and a greater good.

As she battled with cancer, her efforts became more focused on others in a similar situation. She stated, “I don’t want to waste this pain. I want to make a difference for God’s glory.” Her vast knowledge and experience in medicine made her the perfect patient advocate, often explaining difficult processes and options in ways patients could sense empathy and gain understanding. She also dedicated herself to funding research for kidney cancer, a significantly underfunded field of oncological research. With the help of friends and colleagues, she established the first and now annual Kidney Cancer Gala in Dallas, established the UT Southwestern Kidney Cancer Golf Tournament, and advocated for the establishment of the first Chaplaincy program to assist kidney cancer patients at UTSW.

Merlinda’s efforts raised hundreds of thousands of dollars for research at the UT Southwestern Kidney Cancer Program. She continues to influence and inspire the work we do today.