After being down and locked in a room at my house for a week due to COVID, Scooter and I woke up and spontaneously decided to drive to a friend's (empty) house in Tampa, FL for a change of scenery. We stopped in Beaumont, TX, before heading to New Orleans to stay at a friend's empty place.

At this point, he had been seeing blood in his urine for six weeks (off and on), taking antibiotics, and waiting for a negative COVID test to reschedule with a doctor who wanted to do a cystoscopy to see why his bloodwork looked normal, but the antibiotics were not resolving the hematuria. He started having a dull ache in his right hip in late June, but we chalked it up to stiffness because he started a sedentary job at Wyman Gordon after a very active few years at UTMB. We only made it to New Orleans, LA because the stiffness in his hip would not let him sit longer. We ordered takeout, spent the evening isolated, and enjoying one another's company as we listened to music coming in through the window.

July 24, 2022

On the morning of the 25th, Scooter woke up urinating large (quarter sized) blood clots. He was dehydrated and said he felt "off", possibly because of not drinking enough of anything the day before. I knew we were both at a liquid deficit due to being sick. He gave me COVID, so he was 3 days ahead with his symptoms and had it worse than I did. He took another COVID test around 11 a.m. and it was negative.

We spent time getting hydrated before getting back on the road and decided to head back to Houston to go to the emergency room. His blood pressure, O2 saturation, heart rate, and temperature were all within normal limits. The ride back to Houston was quiet. We made it to Houston around 10:30 p.m., and he went straight to a local emergency room (Supreme ER on Jones Rd.) By midnight, we had bloodwork, images, and a very concerned doctor. I stayed in the car because I was still testing positive for COVID. Dr. Desai, if you are reading this, we thank you so much for going above and beyond to see what was going on in Elvoice's body. He had been to two emergency rooms and 2 doctors prior to seeing you (end of May to early July), and none of them took the time to hear him/dig deeper/take a closer look. It was just antibiotics and a diagnosis of a kidney infection based on a CT w/o contrast.

July 25, 2022

July 26, 2022

We made it back to my house around 12:30 a.m. and the news from the doctor was that there was a large lesion on the right kidney and lesions "everywhere" so Scooter needed to see an oncologist and urologist immediately. We got the scans so that I could see what the doctor saw and went home. That was a tough night. As we laid in the dark holding one another, we decided that whatever this was, we were going to:

"...fight it together and have as much fun as possible while doing it."

Scooter snapped the above photo as I looked over the images at 3 a.m. The images told a very concerning story, one that I prayed was not true. The evidence was there, and it was time to get to work to get a name for what was brewing in his body.

We met with the oncologist and scheduled to see the urologist.

August 4th: First PET/CT scan - We took the images after the test and went to view them at his dad's house. My heart sank as I saw the extent of what was going on within. I had to explain to Elvoice, and his parents, what I was sure the doctors were going to tell us at our next visit. There were hotspots everywhere, and I do mean everywhere. I called some friends (in and outside of Houston) and told them I needed their research minds and experience. Everyone was in full throttle research mode to get as much information as we could on all types of kidney cancers and prognostic data, since the largest lesion was in the right kidney. This became my full-time job. Simply put, there was nothing more important for me to do than research what was going on, and how to help him.

August 5th: The PET/CT report was released. Though I warned everyone the day before, none of us were prepared for what was revealed. The confirmation of extensive metastasis in the sternum, clavicles, scapulas, both hips, left acetabulum, both femurs, 8th rib, right pectoralis, sacral area, 2 nodules in the liver, 1 nodule in upper right lobe of the lung, and nodules in both adrenal glands was truly terrifying. Elvoice and I looked at one another and he said, “Let’s get’er done, Love.” I replied, “Absolutely, by any means necessary. Whatever you need, I have you covered.” Our parents, friends, and other family members immediately offered any support they could give from near and far. We knew it would be a battle, but we did not know how hard or long it would be. We decided to get everything in order for the worst-case scenarios, made a bucket list, strategized on how to reconnect with people who were essential/distant, and again promised to fight with everything for as long as possible/needed. At this point, there was no fear of the unknown. The level of peace, serenity, and joy between us (Elvoice and I) was always otherworldly, and this news did not diminish that.

In fact, we believed that our connection is what made the heaviness of everything so bearable. We talked for hours about the potential types of cancer it could be, the advanced stage we were dealing with, potential treatments, clinical trials, and our future. Communication is such a beautiful thing. 🙂

August 8th: Discussion with the urologist, and scheduled surgery for September 7th to remove the kidney because of the symptoms present, e.g. blood clots in the urine.

August 10th: First biopsy (liver) - We changed his diet to alkalize his body and tried to ease the pain in his right hip/leg that was now considered a throbbing pain for most of the day, versus just dull and uncomfortable.

The photo above is of him on the 11th. He felt good enough to go to Happy Lamb Hot Pot, one of our favorite restaurants.

August 1, 2022 - August 11, 2022

August 12, 2022 - August 15, 2022

We were still awaiting the results of the liver biopsy when we were told that another biopsy needed to be scheduled. More tissue was needed because the pathology returned a preliminary suspicion of Metastatic Adenocarcinoma. The second biopsy would be of the right kidney itself.

August 16, 2022 - August 26, 2022

August 17th: Second biopsy (kidney) - As we waited for the diagnosis, we went back to the oncologist because the pain in his right hip had increased to a consistent 8, was worse with movement/touch, had started to be felt in the right knee, and he began to need help lifting his right leg to get dressed (meaning he had to hold his leg up, by the thigh, to get his pants on because he could no longer lift it without using his hands.) His oncologist explained that the samples were sent to a university for a second consultation because they did not have a “typical look” so they were thinking this was a rare sub-type of kidney cancer, but they wanted to be certain.

My work gave me the knowledge that once cancer is in the bones, and that extensive, it would be hard to eliminate it completely, so we needed to focus on longevity and quality of life. His oncologist confirmed this line of thought during our meeting; and wanted to start treatment because he was “hesitant to leave him in this situation with cancer like this…”, as we awaited the final pathology report. We discussed options and spoke about how to get responsive treatment to slow the cancer down. Dr. Jasani, THANK YOU, TREMENDOUSLY, for all of your efforts and care. We appreciate you for everything you did to assist us in this fight.

A brain scan was ordered, and bone strengthening medicine was discussed to help strengthen the bones that were being damaged by the growing lesions. I reached out to MD Anderson Cancer Center to get Elvoice scheduled to see someone; we needed more eyes on his situation.

Elvoice continued working as the pain in his hip increased, and the sleepless nights started to set in. Medicine worked on some nights, other nights… It was bad. What I know is that when something is hurting in the body, IF someone gently rubs other areas, it may soothe you enough to alter how you perceive the pain. IF that someone happens to be the love of your life, the energy between you two can be/feel healing. Since his hip was hurting, we focused on his back, feet, and shoulders. Massaging those areas worked wonderfully! We were able to get a good routine going, and he was able to sleep after each massage.

The photos are from the evening of the liver biopsy; he was so hungry. -Chiba Hot Pot

You can see the weight loss from late July to now. He dropped 28lbs. in one month.

Due to the increased pain in his hip, he started spending a lot of time lying on his stomach versus sitting.

August 27, 2022 -September 7, 2022

August 27th: Relaxing and quiet beach weekend to reflect and just get a change of scenery in preparation for the fight that was about to be mounted.

September 6th: Confirmed diagnosis of RMC, which meant chemotherapy was going to be the initial treatment. The question: “Do you have the sickle-cell trait?” came up. To Elvoice’s knowledge, he did not. However, a simple test confirmed the trait. 41 years of not knowing, which means he didn’t know that he needed to navigate exercise, work, travel, and hydration differently than others.

Dr. Jasani, M.D. reached out to Dr. Nazar Tannir, M.D., and a meeting was set up with Dr. Pavlos Msaouel, M.D. Ph.D., for the 16th. We were told that the cancer had been in place for approximately 18-24 months prior to the symptoms showing up in early May. Elvoice worked so hard, all the time, and was always on the run when he wasn’t working that he thought his fatigue was from working, time constraints, and stressors placed on him from external sources. He was partially wrong; the stressors were a factor, and his body was under attack, in a major way. He reported feeling more tired than usual for approximately one year prior to his diagnosis. Strangely enough, he reported having migraines with aura several times per month for decades. However, those migraines had completely subsided since May 2022. The brain scan was unremarkable/clear, so the doctor said the migraines could have been due to stress and/or environmental factors.

I reached out to the office of the other doctor at MD Anderson, and informed them of the meeting with Dr. Msaouel. In addition, I reached out to the urologist because the surgery needed to be canceled due to the burden of cancer present.

September 8, 2022 - September 18, 2022

September 9th: Beach weekend with family to enjoy one another’s company and relax. We were really focusing on family togetherness and making memories, in addition to relaxing.

September 16th: Met Dr. Msaouel and discussed RMC, who gets it, what research has been done, and what the treatment options were. He was knowledgeable, thorough, and pleasant. The visit was long and informative, so it was GREAT! We learned that those with RMC are not “genetically” predisposed to get it, and it is not known to run in families.

In order to get it you must have three things working in concert:

1) Genes/Genetic Mutation:

• A sickle hemoglobinopathy whether it is sickle-cell disease or the trait (except for 5% of the cases).

• A mutation in the SMARCB1/INI1 gene, which is a tumor suppressor gene.

2) Environment:

• High intensity exercise (When people with the trait exercise, the oxygen in their red blood cells goes down or dehydration occurs. The medulla of the kidney has the lowest area of oxygen in the body, and when the cells sickle, they get stuck there and eventually a tumor forms because of the damage from the blockage.)

• Sedentary Lifestyle

3) Randomness (Bad luck): There is no way to safeguard against this, so surveillance and education are important.

We left feeling good and still resolved to do whatever was necessary to fight this cancer and do it while having fun.

We opted for Elvoice to have treatment with his local oncologist so that he could continue to work; and whenever scans needed to be done, they would be done at MD Anderson. The hospital was 6 minutes from his job; and home was 6 minutes from the hospital, so we had great proximity to do what needed to be done.

The first line of treatments was set to start on September 26th. We were excited and prepared for any side effects known from the treatment which would consist of three drugs.

September 19, 2022 - September 29, 2022

September 19th: The bone strengthening medicine was taken, and bloodwork was done in preparation of the chemotherapy that would be done every three weeks. During this time, the pain in his hip was high (8+). We were told that the medicine would make him feel weakness in his hips, which was a new symptom, and it did occur. Our massages continued, along with an increase in the dosage of pain medicine.

September 24th: HAPPY BIRTHDAY, MY LOVE!!!!!!!!! This marked Elvoice’s 42nd birthday. His mom flew in to surprise him and be with him for his first chemotherapy session/recovery.

September 26th: Line 1/Cycle 1/Day 1 - Elvoice did well during the infusion, which lasted a total of 5 hours. After the infusion, he felt good enough to drive home. We documented many of the side effects, food/fluid intake, and vital signs for 3+ days after most of the treatments, throughout his journey. Like I said before, he became my full-time job. I was on top of his care outside of the hours at the hospital to try to get the best result and not delay seeking help, if something went awry. He rested for three days to recover. I will only share the first three days of what we documented on this platform because his response to that first treatment was beautiful!

NOTE: I (Reas) work in clinical research, so using the word "subject" is not an insult to my love. He started clinical treatments for a cancer with no known cure, so we considered every line of treatment to be a trial, and the documentation followed him as the subject getting treatment. This original line of thinking worked because it allowed me to teach Elvoice about clinical trials in preparation for consenting and understanding his responsibility as a subject.

Example of the entry from the first day of treatment:

“18:00 - Subject did exceptionally well in the clinic and had no immediate residual effects, or adverse reactions to the therapy. 20:30 - A jumping sensation in the left bicep was felt that continued through the night. The same jumpiness occurred in the sacral area and right knee; the sensation turned into pain. The onset of a dull headache and nausea were present around 20:38; a mild sedative and anti-nausea medication was given at 20:45. The subject remarked, “... the pain felt for the last weeks in the right hip, buttocks, and femur has not been present since returning from treatment.” Dinner was tolerated: beans, rice, and chicken. Spirits were up, and the subject was ambulating and alert. No pain medicine or massage given prior to sleep.”

September 27th: 04:00 - awakened with a bad headache and dizziness, no other pain; pain medicine was taken. He ate a homemade breakfast sandwich and felt nauseous. Lunch was tolerated: chicken tortilla soup. He slept for several hours, and had no pain until 16:23, pain medicine was taken. 18:00 - he was excited to be able to lift his right leg to pre-symptom levels, without assistance. Dinner was well tolerated: rolled beef, dirty rice, corn, and green beans. Pain level in leg spiked around 22:15, pain medicine was taken along with anti-nausea medication to prepare for bed.

September 28th: Rested/slept solidly for 5.5 hours (00:00 - 05:30) and woke up suffering from lethargy. A stiffness in his neck was noted, no other pain was documented. The remainder of the day was uneventful after a massage to help with the stiffness. Food was mildly tolerated throughout the day with mild nausea.

One treatment knocked his level 10 pain completely out. This was great news because it let us know that the first treatment worked on what was growing and causing the pain. We knew the first treatment working didn’t necessarily mean that successive treatments would, so we continued to stay realistic and enjoyed ourselves. He felt good to be free from the pain and was able to enjoy time with family.