Raising Awareness

What do you do when you or a loved one starts and/or continues having symptoms and the doctors you visit continue to prescribe medicines that are not working? The answer for me is to investigate! My education was research heavy and years of having to research molecules, proteins, and genes coupled with various friends and family members diagnosed with breast, ovarian, lung, skin, prostate, and brain cancers set me up to be very comfortable with research. Looking beyond an initial diagnosis, especially when the treatment for said diagnosis is not working, is now second nature, for me.

In late May of 2022, I received a call from Elvoice informing me that his urine was "very dark" (tea colored). I asked a series of questions and told him that if he wakes up the next morning and it is still dark, go to the ER. The next morning, he sent me a photo of grapefruit colored urine and went to the ER. His urine, of course, tested positive for blood and leukocytes and negative for nitrates, glucose, proteins, and ketones. A CT without contrast was ordered and he was diagnosed with a kidney infection after the image revealed a small abnormality on his right kidney. He took the prescribed medicine for 14 days and the gross hematuria was no longer evident. However, I was still testing his urine using Siemens Multistix 10 SG Reagent Strips and there were still large amounts of blood being read, so though not visual, it was still there microscopically. He was scheduled to have a cystoscopy in June, but because he was switching jobs and moving 45 minutes away from where that doctor was located, we made the decision to wait to establish doctors in his new town. It just did not make sense to drive 90-minutes, round-trip, to see doctors when he would be less than 10-minutes away from doctors, if he waited.

On Father's Day, he went to enjoy the day with his father and brother; and had a shot of alcohol and a beer. Hours later, he reported the return of dark (cola) colored urine. I asked about whether or not he felt he was adequately hydrated because alcohol dehydrates you. He stated that he consumed almost 90mL of water throughout the day. He was also taking cranberry pills to support his bladder. As the days went on, he was waiting for new insurance cards, from the job he restarted on June 6th, so that he could establish a PCP and be seen. As he waited, the color of his urine turned from a cola color to a full on cranberry color and he started having sporadic pain and stiffness in his right hip. The kicker was that sometimes the urine was clear, as though nothing was wrong, and the pain in his hip was not constant. We thought the sporadic pain and stiffness was occurring because he went from a very physically active job to a sedentary job. In mid-July he received his insurance card as was planning a visit to get this issue checked. We ended up catching Covid and were down for a week to 10 days. I'm not sure if the dehydration that took place during his recovery played a part or not BUT he woke up urinating full on blood clots... large ones. A CT with contrast was ordered and an hour after those images, he was informed that it looked like he had lesions in his liver, right lung, right kidney, and hip bones. That was at 1:00 a.m on July 26, 2022. Needless to say, that was a rough night, mentally and emotionally. We agreed then that whatever this was, we were going to fight it, together and have as much fun as possible, doing it!

The next day, I jumped into research mode, a team of specialists were assembled, and the process of investigating the exact name of his malady began. The first step was extensive bloodwork and a PET/CT to get eyes on the extent of the problem. We requested the PET/CT images, took them to his dad's house, put them on the big screen, and I was absolutely speechless when I opened the files. I knew what I was looking at because of more than a decade of looking at diagnostic images; and had the very hard task of preparing Elvoice, his mom, and his dad for what I was 99% sure was going to be on the radiologist's report when it was released. A week later, what they were prepared for was confirmed by Dr. Jasani. We knew it was a kidney cancer but we did not know what type. His blood work showed elevated liver enzymes but everything else was varying ranges of normal. Dr. Jasani ordered a liver biopsy and two weeks later a kidney biopsy. The question of "Do you have the sickle-cell trait?" came up a few times and to Elvoice's knowledge, he did not. The kidney biopsy confirmed the diagnosis of Renal Medullary Carcinoma and a simple blood test was done to confirm the sickle-cell trait, at the end of August. By then, Elvoice was using a cane to ambulate because of pain and the decreasing ability to bear weight on his right hip. We visited Dr. Pavlos Msaouel on September 16, 2022. Honestly, all the research conducted by my group and me had sobering statistics regarding the prognosis of those diagnosed with RMC. Thankfully, we all received degrees in either biotechnology, nanotechnology, genetics or some other biological science and knew that though literary statistics were sobering, research is evolutionary. Though you cannot find information refuting what is published, that does not mean that said information is not out there. Meeting Dr. Msaouel of MD Anderson Cancer Center, in Houston, TX confirmed that. He is so very passionate about finding, investigating, and curing this form of kidney cancer. Having a dedicated team, in clinic and outside of the clinic, is so vitally important during this fight.