Finding Her Voice: Anjee’s Path Through Metastatic Kidney Cancer

Living with stage 4 kidney cancer (clear cell renal cell carcinoma or ccRCC), Anjee describes her experience as both devastating and clarifying, reshaping how she sees her body, her time, and her purpose. She first noticed blood in her urine in October 2022, a subtle but alarming change that her instincts told her could not be ignored. Despite normal follow-up labs and repeated reassurance that everything looked “fine,” Anjee kept pressing for answers because she knew something in her body felt off.​

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Before kidney cancer, Anjee led a very active, community-centered life. She worked multiple roles in education, was deeply involved in her church, and regularly did boot camp–style workouts and long walks with her husband. Even at a higher weight, she was physically strong and socially busy, often hosting Bible studies and gatherings at home. That full life made the escalating symptoms, including intense abdominal pain, persistent bleeding, and mounting fatigue, all the more jarring.

Over months, Anjee navigated delayed referrals, insurance changes, and appointments that were scheduled many months out despite her growing concern. When a urologist finally ordered comprehensive testing, CT scans revealed a massive tumor in her left kidney. Within ten days, she underwent a radical nephrectomy; pathology confirmed kidney cancer, specifically clear cell renal cell carcinoma, with spread into the renal vein, upstaging her to stage 3. Later scans in September 2024 showed metastases to her lungs, and her diagnosis was updated to stage 4 kidney cancer with rhabdoid features.

Anjee has since moved through multiple lines of treatment, including immunotherapy and now an anti-cancer medicine that counteracts a protein promoting cancer growth. Each treatment has brought its own mix of side effects, uncertainty, and cautious hope. She lost significant weight, endured severe fatigue, gastrointestinal issues, skin problems, and infections, yet continued to work, travel, and stay involved in her church and young adult Bible study group when she could. Anjee refuses to “just live with cancer” and instead focuses on finding ways to thrive, whether that’s walking with her husband, mentoring colleagues, or making it from the bedroom to her home office on hard days.

For others facing kidney cancer, Anjee emphasizes self-advocacy and community. She urges people to listen closely to their bodies, push back when symptoms are dismissed, and seek out support from church communities, family, work, and online kidney cancer groups so they remember that they are never alone in the experience.

Watch Anjee’s video and read through the edited transcript of her interview below. You’ll learn more about her kidney cancer experience.

• Listening to your body matters; she trusted that early blood in her urine and a sense that “something was off” meant she needed answers, even when her labs looked normal.
• Delays from insurance changes and long referral waits can be dangerous. Anjee encourages patients to speak up, ask more questions, and push for timely imaging and specialist visits.
• Her transformation shows up in how she moved from feeling dismissed and scared to becoming a fierce advocate, actively coordinating her care, challenging denials, and insisting on options.
• Thriving with stage 4 kidney cancer for Anjee means redefining what is possible: traveling when she can, mentoring at work, hosting Bible studies, and savoring time with her growing family despite fatigue and ongoing treatment.
• Her experience shows us all that you are not “overreacting” when you advocate for yourself. Your lived experience is evidence, and it deserves to be taken seriously.

• Name: Anjee A.
• Age at Diagnosis:
  • 46
• Diagnosis:
  • Kidney Cancer (Clear Cell Renal Cell Carcinoma With Rhabdoid Features)
• Staging:
  • Stage 4 (after initial stage 2 and stage 3 diagnoses)
• Symptom:
  • Appearance of blood in urine
• Treatment:
  • Surgeries: radical nephrectomy, adrenalectomy
  • Immunotherapy: pembrolizumab
  • Targeted therapy: tyrosine kinase inhibitor: axitinib
  • Hypoxia-inducible factor-2 alpha inhibitor: belzutifan

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Introduction and diagnosis

My name is Anjee, and I am from Austin, Texas. I have kidney cancer, clear cell renal cell carcinoma, stage 4 with rhabdoid features, which is very unique.

I was originally diagnosed as stage 2. Then, when I had the surgery, I had a radical nephrectomy, and when they took out the tumor, which had gone to the renal vein, they then diagnosed me as stage 3. That original diagnosis was in September of 2023. Then I went to stage 4, clear cell renal cell carcinoma, but it had metastasized in September of 2024. So I was first diagnosed in September of 2023, and then in 2024, I went to stage 4 because it had metastasized to the lungs. 

There were other mets where they weren’t sure what they were in my liver and my lymph nodes, but after a biopsy of the liver, it was determined that it was not cancerous, and the lymph node could not be biopsied. But at this point, it’s gone; they don’t really know if it’s just so small that it can’t be detected, so we’re still monitoring the lymph node. But at this point, the metastasis is only visible in my lungs.

My life before kidney cancer

Life before cancer was a little different because I kind of transitioned into a new job right before I was diagnosed with cancer. But at that time, I had been working my job as a teacher, as a campus administrator, and now in an office setting. It was still wake-up-early. 

I’ve always worked at least one full-time job. There have been times when I’ve even worked a part-time job with my school district, whether it’s been tutoring students or doing something like that. At one point, I was also going to grad school and was very active at my church. 

Before my cancer treatment, I was always very physically active. I was a lot larger, at least 100 pounds bigger than I am now, but I was very active. I was doing Camp Gladiator 3 to 4 times a week. My husband and I would go on walks; he would run, and I would walk. 

We’ve always vacationed because my husband and I both work in the school district, so we have matching days off. When we would go on vacations, we would hike; it was just a lot of activity, even though I was larger, definitely much heavier. I was very active and very strong in the sense that I could do things. 

We hosted Bible study at our house; we’re very active in church. Hosting things and constantly having people over and just doing all the things, and my friends always say, “You always do so much.” So I definitely had a very active physical lifestyle and just a very busy lifestyle, whether it’s doing something for church, hosting parties and birthday parties, or gatherings of any sort, and even the physical activity of being able to do Camp Gladiator or that sort of boot camp style workouts. I have never been a runner, but I’ve always been somebody who will do jumping jacks, burpees, crunches, and all those things. So it was a very busy life.

My first symptoms and diagnosis journey

The very first physical symptom was blood in the urine, and that would have been October of 2022. 

Before that, I knew something was off; I just knew my body was off, but I didn’t know what it was. I had already had a hysterectomy in 2018, but I just knew something was off. I’ve always been somebody who would go to my primary care for regular yearly checkups and to my gynecologist for the well-woman exam as well, and my labs were always off, but then when we’d go for a follow-up, they were not off. But I knew something was off, so I would constantly go and say, “I knew something was off.” They’d be like, “No, your labs are fine; everything’s fine.” 

I couldn’t explain why because there were no outward symptoms other than I just knew, and of course, being heavier, they would say, “If you lose some weight, you won’t be so tired,” and my friends and even my husband would be like, “You do so much.” I’m like, “No, but I know me, and I know I’m getting older, but there’s just something that feels off.” Labs would always come back normal after they were abnormal, and they weren’t ever out of a wide range, but I always felt like there was something just not right.

Blood in my urine was very light, and since I had had a hysterectomy, I shouldn’t have had blood in my urine because I don’t have periods. Had I had my period still, I would have never known that because I used to have such erratic periods that spotting would have been normal. But it’s been a couple of years since I had a hysterectomy, so why am I spotting? It was very light, but it was happening here and there. So I went to my gynecologist because I had a hysterectomy, trying to figure out if something was going on in my cervix or down there that I needed to be worried about.

My gynecologist said that everything was fine. They did biopsies and labs; everything looked great. But I said, “Yes, but I shouldn’t be bleeding. Why am I bleeding?” They’re like, “Keep an eye on it.” From October through November, it was just a handful of times, but because I’m pretty in tune with my body, I knew something wasn’t right, so I kept a little journal on my phone of the things that I was seeing and the color just to gauge for myself.

Then, probably in March of 2023, I started again a little more often. It was still light, but happening more often. Then, in March of that same year, I was at work and started feeling a lot of pain underneath my chest, kind of where the ribcage meets. At first, I was like, “Wow, that hurts.” It felt weird, and it didn’t feel like gas, but what could it possibly be? I doubled over in pain. My husband works in the same building, so one of my coworkers messaged my husband; she escorted me down to the first floor, where my husband met me, and he took me to my doctor’s office because they have a walk-in during the day. They saw me doubled over in pain; I literally could not stand upright. I was much heavier, weighing at least 220-225 pounds, so he couldn’t carry me, but I was in so much pain. 

They did an ultrasound; “No, there’s nothing wrong, but we’ll send out an MRI order.” Kind of go home and wait it out because everything was normal. I’m like, “You literally see me doubled over in pain; I can barely stand upright.” But because everything was normal, they’re like, “Just send you for an MRI.” 

Unfortunately, my primary care doctor at that time had been bought out by a different organization, so now that new organization was no longer covered in my network. Insurance was saying I need to find a new primary care that has never seen me and ask them to send the referral to radiology for the MRI. So it was this big back and forth, and then that symptom of pain just went away, so it became, “Whatever; I’ll deal with it later. I’m not in any pain anymore.” 

My job gets really busy in the April-May time frame, and I wasn’t presenting any more symptoms, so I just stopped seeking answers. I did find a new primary care and established care, but I never asked them to do the MRI because the pain was gone. Maybe it was just gas; who knows? 

But I did continue to have more bleeding, so I went back to my gynecologist, who, at the end of April or beginning of May, referred me to a urologist and gastroenterologist. But because I wasn’t presenting any more symptoms, they’re like, “We’ll see you in October.” 

So here we are in May, and I have to wait five months. Because I was not bleeding to the point where there was actual blood, and every time they pulled urine for urinalysis, there wasn’t any blood showing up, even though they didn’t disbelieve me, there was no evidence. So, “We’ll see you in October.” By June, it was becoming more prevalent, more often, and more; it wasn’t just a little bit of blood, it was definitely way more blood in the urine.

Escalation and discovery

By the end of July 2023, it was Thursday night through Sunday, when literally every time I went to the bathroom, it was bright red; there was no doubt that there was blood in the urine. 

I remember the first time I saw that amount of blood; I started crying because it was so much blood, and I actually cried more than when I was told I had cancer. That was because I had been telling these people something was wrong, and no one believed me. When I saw that much blood, I was like, “There’s something wrong; clearly there’s something wrong.”

That Monday morning, I went into urgent care; they’re like, “There’s something definitely wrong; we don’t know what it is, but you need to go see your doctor.” At this point, I’ve seen my doctor one time; this doctor does not know me. They had my medical records from 12 years with my previous doctor. I’m like, “You’re asking me to go back to a doctor I’ve seen one time.” 

That’s when all the frustrations with insurance started. I called my gynecologist and told her there was something wrong, and about the four days of bleeding. ”Please get me to urology or gastroenterology; I cannot wait till October, and I do not want multiple appointments with this new primary care who doesn’t know me as you know me. You’ve seen me for 20 plus years.” 

So they did; both a urologist and a gastroenterologist called me that same day and made appointments that week. The appointment with the urologist was sooner; I explained everything. They’re like, “We’ll see you in a couple of days; we’re going to schedule a CT scan.” I went in and did the CT scan, and they had a series of tests for the next two weeks, which, for me, was okay because these people are listening to me; they’re not dismissing me. Even though there were uncertainties, I felt glad they were listening. 

It was a little odd going to the urologist because everybody in the waiting room was gray-haired, older, 60-70 year olds, even some on stretchers from nursing homes. I’m like, “Why am I here?” It was messing with my mind; am I blowing this out of proportion because I look 20-30 years younger? 

The nurse practitioner and doctor took me very seriously, which I was grateful for because I kept getting “Your labs look fine” or “You’re overweight; maybe lose weight,” but that doesn’t explain blood in urine.

The diagnostic tests they performed

During that week at the urologist’s office, the first test that same day, before scheduling the CT scan, was labs, drawing blood, and urinalysis. 

Even though the urine looked normal, the blood was off the charts. They scheduled a CT scan, sonogram, and cystoscopy to check the bladder to make sure it wasn’t perforated or something was wrong. The cystoscopy was the last of the two weeks, on a Friday. 

When I went in, the doctor explained; I was in the gown, nurse was there. “We’re going to do cystoscopy, put a scope through vaginally to the bladder, take pictures.” He’s like, “I don’t think I’m going to find anything because your CT scans came back very concerning, and we’ll discuss that when we’re done.” I’m like, “Okay.” He did the test; “Everything looks good with your bladder. Get changed, and I’ll come back and discuss your CT scans.” Totally clueless; had no idea. 

Afterwards, replaying, if I had used context clues, he was prepping me, but I wasn’t picking up that he was preparing me for the news. He came back with his laptop; “I want to show you the CT scans. This is your right kidney; this is what it looks like, a healthy, normal kidney.” I’m like, “Oh, look at my kidney; it’s so cute and pretty; she’s healthy, right?” He’s like, “Now look at this kidney.” I’m like, “What’s that?” “Yeah, exactly; that is a tumor. Your tumor has overtaken the kidney; your left kidney, you cannot even identify it because that blob is how big the tumor is.” 

In my head, I’d dealt with ovarian cysts my adult life that were never cancerous, so “Okay, we’re going to take it out.” “We can’t remove the tumor without removing the kidney.” “I can live with one kidney, right?” “Do you understand what I’m telling you?” “How many days out of work?” Thinking 3-5 days. “A tumor this size that has overtaken the kidney; I’ve seen this before, more than likely cancer; we need to get it out.” “The whole kidney?” “Angela, you have kidney cancer, and we need to take that out to figure out if you’re stage 2 or 3.” That’s when it finally hit; I glazed over. 

“Is somebody here with you?” “Yes, my husband’s in the waiting room.” He called the nurse to get my husband. As soon as I saw my husband, I started crying. The doctor explained to him the healthy kidney and massive tumor, said he would be the surgeon, and schedule as soon as possible. When he said “as soon as possible,” everything hit; it was a Friday, called Tuesday to schedule, surgery next Tuesday — within ten days. We’re not talking weeks; is the cancer growing all over? He was calm; “Pretty sure stage two; once pathology, we’ll know—2 or 3.” 

My brain jumped to conclusions; my husband and I hadn’t had our tenth anniversary, previous failed traumatic marriage, now beautiful life with husband and stepchildren. “I can’t die; I have this beautiful life.” I’d spent my 20s-30s in a horrible situation; “This isn’t fair; I can’t die; I’m living such a beautiful life; kids getting married, grandchildren.”

My pathology report after surgery

I had the surgery on a Tuesday, and on Thursday morning, the urologist came in and told me pathology came back, unfortunately, at stage 3. 

With kidney cancer, the size of the tumor staged it at stage 2, but when they went in to remove the kidney and tumor, the surgeon saw the renal vein had traces or signs of cancer. They removed the adrenal gland, renal vein, and the kidney with the tumor. 

The pathology: the adrenal gland was negative, but the renal vein — which goes into the vena cava — had cancer, so it traveled out of the organ. So I was staged at stage 3.​

Genetic testing and family history

I had genetic testing when I had my hysterectomy, specifically for breast cancer. 

After my renal cell carcinoma diagnosis, my oncologist sent me for genetic testing. It determined that breast cancer and cervical cancer run in my family, but kidney cancer does not.

My first-line treatment plan: Immunotherapy after my stage 3 diagnosis

When I first met my oncologist in October of 2023, before I even met him, they sent me to get a full-body bone scan, a brain MRI, and labs. Then, when I did meet my oncologist, the MRI and the bone scan came back clear. While I was already diagnosed at that point as stage three, we started on pembrolizumab, which is immunotherapy.

My immunotherapy regimen was one dose every six weeks. I did that for 12 months. During that time, every two weeks I was having labs drawn, and every three months I was having a CT scan. I was having side effects and symptoms; for example, there were a couple of times that I had a really bad headache, so they sent me for another MRI. They did an MRI of my brain several times, as well as a bone scan, during those 12 months. Then, in September of 2024, they found that it had metastasized.

Hearing the kidney cancer had metastasized to stage 4

The week before I learned that it had metastasized, I had had the CT scan, brain scan, and bone scan. Again, I just knew something was wrong. I didn’t have any outward symptoms, but I just knew something was wrong.

As I mentioned earlier, I’m very involved in church and have a very strong faith. Throughout this whole time, even before cancer but especially during cancer, I’ve prayed a lot. I don’t know if that was God preparing me, but I just knew something was wrong.

My doctor actually called me. He did not wait for me to come into the office. They called me when they got the results that showed that there were mets in my lungs. I think that’s probably one of the reasons why I also knew something was wrong, because typically, my oncology team uploads everything to my portal. I can see on my portal when results come in. It had been longer than usual; usually it’s this many days, but now it’s been this many days and nothing’s happening.

My husband and I were actually picking up groceries. We do curbside pickup, and I was picking up groceries. The minute I saw my doctor’s office name on my phone, it was like this warmth fell over me. I just knew. I knew it was my doctor, and he’s calling to tell me that I have mets, that the cancer had spread. I just knew.

I put it on speakerphone because my husband was with me. He was like, “Well, it’s not the…” The minute he said, “It’s not the news we were hoping for,” I just knew. I wasn’t crying hysterically like I thought I would be. I thought I would be hysterical. It was just tears running down my face. Of course, my husband held my hand, and we were both looking at each other like, “What in the world? How?”

I think for me, the biggest reason why I was shocked, if that’s the right word, was that I had gone through so much in this year, going through this treatment, and for it not to work. That was my biggest thing. I will go through all the side effects. I had lost so much weight at that time — I had lost about 60–70 pounds because I couldn’t keep anything down. There would be nights when I would be literally in the toilet all night, either throwing up or having diarrhea.

I remember I would be like, “Okay, I’ll go through this so long as this is working.” I think that’s what was the hardest for me, because I was like, “I will deal with all the side effects, I will deal with the literal physical pain.” Not being able to walk because my feet were so dry and cracked from the side effects of the treatment. Not being able to wear certain shoes. All that stuff, I would always tell myself, “It’s worth it because it’s killing the cancer.”

So when you hear that it spread, it was like… all that. I got off the phone with my doctor. He’s an amazing oncologist. He had already talked to his colleagues at MD Anderson, and they already had an idea: “You’re going to come to the office and the appointment on this day, we’re going to discuss these possible treatments.” He definitely made me feel like, okay, this isn’t the end. It has definitely spread, but it’s not the end.

Because it had spread — at that point, we knew there were mets to the lungs, mets to the liver, and one of my lymph nodes — he said, “You’re going to come in, you’re going to see me, we’re going to talk. But before we can determine the next course of treatment, we need to have yet another bone scan, brain scan, and then you need to see a lung specialist so they can biopsy the seven mets to your lungs. We need to see if those are cancerous, if it is even cancer.” That’s what he was saying. It’s not what we’re seeing only, but we need to determine for sure.

So I had to get that biopsied. I had to get a biopsy of the liver. They said, “There’s no way we can biopsy the lymph node, but we’re going to send it off to another specialist to see if he thinks it’s possible.” I guess it was so close to a nerve or something that they weren’t sure if they were going to be able to do that.

That sent a whole other set of emotions, because it’s like, “Okay, we see spots, but we can’t even treat anything until we know what it is.” Everything needs to go through insurance to ensure that they’re okay with paying for me to even see a specialist. After that specialist, I see them, and we still have to see, well, is the facility that I’m going to go to in-network? Is my doctor in-network? Is everything in-network?

It felt so unfair to me because I’m like, I have been given this horrible news. On top of now having to process this, I have to ensure: are all the people, is the medication covered, are all these things covered? I felt like this wasn’t fair for me to have to be going through this horrible news. I have to be the one to call everybody to make sure, “Are you in my network?” Begging the insurance, please give me the prior authorization as soon as possible. Don’t wait, because the very first location that they had sent me to have the biopsy wasn’t covered in-network.

I’m like, “This makes no sense.” You’re my insurance. You know if it’s covered. Why would you even send me there? It felt to me like, “Why do you not have some sort of a patient benefits person that says, “Listen, we know — we are the ones that provide your insurance coverage, we know who we cover.” Why would you not say, “This is the list of the people that you can go to”?

Why do you just send this blanket denial and kind of like, “Oh well, lady, figure it out”? How unfair is that? I’m fighting for my life here, and I still have to go through these hoops. I’m grateful to have insurance, but it’s like, seriously, do y’all not see how unfair this is? It’s like you’re making me be the one to figure this out.

That’s when I became this very fierce advocate. Nothing against any doctor or even my insurance at that point, but in my mind, I was like, “Screw you, cancer. I’m going to do whatever the heck I have to do because you’re not— I don’t care if it’s insurance, I don’t care if it’s a doctor, you’re not taking my life. I will fight fiercely to the end to make sure I get whatever treatment.”

So I became very much more active. Whenever my doctor would say, “We’re going to be…” I’m like, “No, where is it going to be?” I started asking all the questions right up front before we started. “Where is it going?” “Nope, that’s not covered.” I would pull up everything on my phone. “Nope, that’s not going to work. Nope,” because at that point, I’m like, “I’m either going to sit here and become a victim, or I’m going to advocate for myself because no one’s going to advocate for me but me.”

Yes, my husband loves me. Yes, my doctor is amazing. But at the end of the day, I want to live, and I’m going to do whatever I have to do to make sure I give myself a fighting chance. I’m not going to get lost in the system. I’m not going to fall through the cracks. So I started to be a lot more proactive. I’ve always been a pretty proactive person, but it was like the stark realization of, no, this isn’t fair, and people shouldn’t have to deal with this.

Thankfully, I’m not so old that I’m not familiar with apps and stuff like that. But the runaround that people try to give you: “Well, you need to apply for that online.” I’m like, I’m on the phone with you. Just help me. I’m literally on the phone with you right now. This makes no sense. If I were 80 years old and I didn’t know how to get on an app, it shouldn’t matter. You’re literally on the phone with me. Just talk to me right now. It was very frustrating.

Conversations about prognosis and limited treatment options

At the very beginning, when I very first got diagnosed, at the very first meeting I had with my oncologist — at that point I had already looked at the statistics you find online. The worst thing you can do is Google your prognosis because I’m like, “I’m going to die in two years.” That was pretty much one of my first questions. I was the patient who went in with a laundry list. I had my phone with all my questions.

The very first thing that my doctor told me was the good news and the bad news. “The good news is that we don’t normally see somebody this young with this specific type. Usually, kidney cancer occurs in people 60 years old or older.” I remember when he told me, “It’s 60-year-old men who smoke and are overweight and have heart issues or kidney issues.” I’m like, “Okay, well, I was overweight, but that’s it,” because I wasn’t 60, I wasn’t a man.

He told me, “The good thing is that you’re young enough — I was 47.” The other good thing is that we’ve come a long way. While we don’t know how long you may have, it looks very promising that, even though statistically speaking five years is the typical prognosis, there are many people he was even currently treating that have been living 10, 15, 20 years with certain treatments he was recommending for me. So that was positive.

But then, after the one year when that first one treatment — I’m like, “Okay, well, that one didn’t work. So what does that mean for me? Now what?” “We’re going on to the second treatment.” What does that mean? Does that mean that now, instead of thinking I’m going to live for 10-plus years, we cut that in half? He’s like, “Same situation. There’s no way for us to predict. You are stage  4, and the rhabdoid features of the clear cell renal cell carcinoma are definitely what’s making your cancer a little more aggressive.” I’m like, “Okay, but what does that mean?”

He’s like, “Unfortunately, there’s no way for me to tell you how long you have. We’re just going to keep going. You have a lot of treatment options.” I learned later that “a lot” doesn’t really mean a lot. A lot is more than one, but it’s not really a lot. It’s definitely more than one option, but there’s really not that many. There’s probably about five or six, and that’s not really a lot.

At this point, I’m like, “Okay, I have about five or six treatment options, and obviously, in three to five years, there are trials. There are definitely trials, but those are just trials.” So there was never really a firm prognosis, nothing like that. Just kind of like, “Well, I know people who’ve lived on this treatment for 10 years or 15 years.” But then, when my body stopped responding to both the first and second line, he was like, “People have lived this long.” I’m like, “Well, the first one worked for one year, the second worked for 16 months. Now I’m on my third treatment. Gosh, could we at least get to two years before we say that this one fails?”

Third-line treatment: Belzutifan and living with extreme fatigue

I am now five weeks into my third line of treatment. I am now on belzutifan, which is a pill I take one time a day. It’s three pills total. It’s 120 mg, so each one is 40 mg — three pills of belzutifan every day.

In comparison to the second line of treatment, there are fewer side effects, but they’re more intense. I didn’t experience a lot of fatigue with the second line of treatment, but the second line of treatment was probably the worst in terms of even more weight loss. I had dropped all the way down to 112 pounds at one point and was constantly getting infections and stuff like that.

The majority of the side effects that I’m experiencing now are swelling of the hands and feet, but not all at the same time, which has been good, and it’s not been major swelling. It’s only been one day since I couldn’t actually walk because of the swelling.

But there is severe fatigue, which I did not experience in the previous treatment. With the previous treatment, I was like, “Well, if I’m not eating and anything that I’m eating isn’t staying in my body, of course I’m going to feel tired, right?” I’m able to actually eat now, which is amazing. Things may not taste correctly, but at least I can actually eat, and I can keep food down or keep food in. So that’s wonderful.

But the exhaustion is absolutely insane. I’ve never experienced this kind of exhaustion. I’ve been exhausted before with the fatigue you feel with cancer treatment, but not to this extreme, where I’m like, “Oh my God.” With this current treatment, I don’t get tired as many days, or at least in the five weeks that I’ve been on this medication, I haven’t been tired as many days. But when I do feel fatigue, it is extreme. The level of fatigue is beyond what I had experienced with my second line of treatment. There are not as many bad days, but when the bad days come, they’re really rough. There’s definitely a difference there.

My skin is clearing up, so I’m able to not have the pain of the open wounds from how peeling and dry my feet were. That was good. Same thing with my hands. I literally, before, couldn’t even open a water bottle because my hands were so cracked and dry, and my feet — I couldn’t walk. It was wild. Now, I can actually open things. That’s been wonderful, to be able to wash dishes and do things like cut an onion — things that I couldn’t do because I couldn’t grasp because of how dry and sensitive my hands or my feet were. So that’s been improving.

But the fatigue that I’m experiencing now is definitely crazy. It seems like — and my doctor and I are not really sure on this — we don’t know if it’s because it’s the cold and flu season, or if it’s because of how compromised my immune system is, but I definitely have been getting sick, catching things more now than before. So I’m not really sure what that is. We’re kind of keeping an eye on that. I have been going to my doctor more often right now, just because of everything that’s coming up that didn’t used to come up. So there’s that.

Thriving with stage 4 kidney cancer: Travel, church, and work

When I say that I’m thriving with cancer, I am not yet a survivor. I hope to one day be labeled that. I don’t want to ever say that I’m just living with cancer, because to me, when I hear myself saying that I’m living with cancer, I feel like I’m just accepting the cancer and doing nothing.

In the two and a half years that I’ve been diagnosed with cancer, my husband and I have continued to travel. We’ve visited Vietnam, the Dominican Republic, El Salvador, and Honduras. We’ve gone to different places in America to travel. When we go, we do as much as I can physically. While I haven’t been able to do the zip lining that I used to be able to do, we still do as many adventures as we can, even if it’s just a little tapered down. Maybe I’m not zip-lining — although I did zip line in El Salvador. I didn’t get to zip line in Mexico because I just wasn’t well enough to do that. So it’s not always the extreme adventures, but we’re still exploring the world.

Even in my daily life, while I’m not as active as I used to be, we just recently started — when I got diagnosed with cancer to begin with in 2023, we stopped hosting Bible studies in our home because everything was just too much for me. I was transitioning, and with the fatigue and all that. While we were still attending church and my husband was still committed to his ministry, there were a lot of things I had to back off on.

But just this season, we started hosting Bible studies again with the young adults — the 18- to 28-year-olds — and they’re amazing. They are awesome. They keep me young. They’re so helpful. They’re always going, “Miss Angela, we’ll help you with this.” They’re very helpful. Their help allows me to still be a help, even though I’m not doing the extreme amounts I used to.

I still try to host parties, maybe not as many and not as often, but I’m still hosting. I still go to work. I don’t always go in person, but I still stay as active as I can, working virtually. I go for walks with my husband when I’m able to. So for me, thriving is still allowing myself to do things, experience things, live, without accepting a mindset of “I just have cancer.” I obviously am in stage 4, so I will have this diagnosis for the rest of my life, but I’m not going to stop living, and I’m not going to stop experiencing life, even if going to work means just going from my bedroom to my office. I’m still going to go to work.

I think professionally, that’s where cancer hit me the most. In my mind, I had myself on this trajectory: I’m going to go from my position to the next level, to the next level, to the next level. I kind of had a five-year plan of where I wanted to be, still in the same school district I work in, because I’ve been there for over 20 years. I had a plan: in the next five years, this is where I see myself.

I think the first year was the hardest for me professionally, to think that I was thriving, because I really did feel that I was very stagnant. I felt like, “Oh my gosh, this is where I’m going to be.” This is where I’m going to end up retiring, as if that’s a horrible thing. But in my mind, it was such a blow to what I personally had for myself.

I’m learning to thrive in my job. I have not applied for any promotions, but I’ve asked my current director to, in a nutshell, be my mentor and help me take leadership roles. Even though I’m still in my position and my title and my salary are not changing, I said, “Let me take on some leadership roles, so that when my cancer is stable, and I’m no longer transitioning from one treatment to another, I can at least move up to another level in my job.”

Having a boss and a whole system, really, in my team and department that has allowed that to happen has felt like, at least now, I’m thriving professionally. For the longest time, that was the hardest thing. Every time I’ve ever had any scans, specifically brain scans, it’s always the thing that I tell my husband. I think that’s the only time I’m like, okay, the cancer is not responding, but my prayer is always, God, please. I know that bones and the brain are the first places that kidney cancer is supposed to spread to, which is what my doctor always says. So my prayer is always, God, please preserve my brain.

I am definitely no genius, but my identity has always been in being a knowledgeable person, somebody who can grow and do things. That’s always been important to me. So even though my brain has always been clear — no evidence of disease in it — the fact that I couldn’t thrive professionally, if you will, hit me initially.

Then I think I finally had to internally accept the fact that, okay, I may not have a change in title and I may not have a change in pay, but that doesn’t mean that I can’t mentor people. There’s a person that I helped to train and mentor, and she just actually became one of our leaders; she got promoted to a position that’s essentially over us, which, for me — previous to cancer, I would have been like, “That’s my job, I can totally do that job.” But I’m like, “Wait, I helped to mentor her.” So I feel like, to me, that’s winning, and that’s thriving. Even though I’m not in that position or that role, I feel like I’ve helped to get her to that place by showing her certain things. Of course, she has her own merit, and I’m not taking that from her, but in our area, I’ve helped her. That, to me, is a win. I’m like, “Okay, I’m thriving by helping others, even if I’m not the one in that position yet.”

So that’s how I feel like I’m thriving in life and thriving with kidney cancer, not just sitting back and waiting for days to just pass. I definitely have my terrible days where I can’t even get out of bed, but I refuse to let those days identify who I am. That’s why I’m like, I’m not going to just live with kidney cancer. I want to be thriving with kidney cancer.

My hope for the future: Grandchildren, better treatments, and easier access to care

My hope for the future is that we, in America and the world, will hopefully find better treatments for people with stage 4 cancer, including kidney cancer. Obviously, I hope to be at a point where I’m on a treatment that works for me so that I can hear “no evidence of disease.”

I have a grandbaby who’s going to be born in May, so I hope that I get to have years with my grandbaby. It’ll be my first grandbaby, so hopefully I’ll have more grandbabies in the future too. That’s my hope — that I personally will have a treatment that’s working for me, that will help me to be stable and to hear, “no evidence of disease,” for years to come.

Since July of 2024 was the last time I heard “no evidence of disease,” and then in September 2024 was when I heard that there was evidence of disease. So I hope to hear “no evidence of disease.” I hope that there are more treatments available not just for me, but for anybody who has stage 4 cancer, specifically kidney cancer.

I also hope that something happens with insurance so that people don’t have to go through this at whatever stage. When you hear the words, “You have cancer,” you shouldn’t also have to fight to get approval for treatments and authorizations. That’s not fair for any stage.

Advice for others with stage 4 kidney cancer: Build a support system and find community

If you’ve been diagnosed with stage 4 kidney cancer, my advice to you would be: you need to get yourself a very strong support system. That’s very hard, and it may look different for different people.

I’m very, very, very blessed, and I do not ever take for granted that I’ve been able to find, within my church family, a support system; within my biological family, a very strong support system; even in my work, I have a strong support system. Even online, I’ve been able to find several groups. The very first person who helped me face this — I was so lucky that I found her on Facebook in a large group. She happened to live here, and she actually went to the hospital the day that I was having my kidney removed. She went to the hospital and brought me flowers. I met her on Facebook two days before, and she came to the hospital, brought me flowers, and told me her story. We met for dinner later, after I had the surgery. The randomness of finding somebody online.

So your support system may not be somebody that you even know yet. I’ve met so many amazing people online, whether it’s a social media group or what have you. You are not alone. With stage 4 cancer, you may feel like you’re alone, but you’re not. If you seek that support system online, you will find an amazing group of people, in the worst way possible, but the most amazing group of people that understand you and get you.

There are times when I’m having the day before scans or the day before I find out results, and I’m like, “Nobody understands.” Even though I have a great support system, unless you’ve gone through scanxiety, you have no idea what that’s like. To be able to go online and have people say, “I got you,” and talk you down from the cliff, because you kind of get there. You’ll spiral, but they’ll reel you back in.

Definitely find that group. My oncology office has an online support system, but I’ve never used it. Your doctor’s offices may have those. I found mine through Facebook. But I’ve also now found a new community on TikTok. So there are all these different places that you can find a cancer community. You may have to think outside of the box, but you are not alone. Whether that’s your doctor’s office, your church group, TikTok, whatever — they are out there. You have real people out there who are going to walk with you.

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