Diagnosed with Leiomyosarcoma, Julee Was Given 18 to 24 Months to Live

For five years, Julee kept going back to the doctor with the same complaints: pain in her right side and urine that smelled sulfurous and off. Each time, she was told the same thing: that she was fine. One doctor even blamed heartburn. A CT scan in November 2023 came back normal. Fifteen months later, after scans and a surgery, Julee would officially receive a leiomyosarcoma diagnosis.

Interviewed by: Tory Midkiff
Edited by: Katrina Villareal

Rewinding back to December 2024, a rough night of vomiting sent her to urgent care. On the drive home, she got a call telling her to turn around. They’d found a large mass, and she needed emergency surgery. Within days, a urologist used the word “tumor” and told her to cancel her plans. “Our lives are never going to be the same after today,” she remembers telling her husband.

The next year brought liver metastases treated with ablation and a newer procedure called histotripsy, a procedure that uses focused ultrasound waves to treat liver tumors. Then it was one thing after another: a clinical trial that didn’t work, a kidney lesion, slow-growing lung nodules, hair loss, and weight gain from treatment. She has found hope in an online community of other sarcoma patients, people who understand this in a way no one else can. She sought a third opinion at City of Hope, and while she wasn’t a candidate for surgery there given how much the cancer had spread, she keeps finding new options by seeking out sarcoma specialists and other patients living with the same rare disease.

Julee is between treatments right now, watching a few small spots her doctors are keeping an eye on, and waiting on her next liver procedure. Her husband is with her every day, and her son flies in from Denver for every appointment. She says she has had more quality time with her family in the past year and a half than she had in the 10 years before it. Her labs are still good, and no one has told her she’s near the end. “You can still experience extreme, profound grief, sorrow, and sadness, and being scared and afraid, alongside joy and gratitude and peace, at the same time.” She didn’t know that was possible until she lived it.

Watch Julee’s video or read the edited transcript of her interview to find out more about her story:

• Julee complained about right flank pain and sulfur-smelling urine for years before a scan caught anything. The scan that finally found it, in December 2024, showed a 4-centimeter mass on her ureter.
• When her oncologist told her she had 18 to 24 months to live, it wasn’t the news itself that stayed with her, but how he said it. She still thinks about how different that day would have felt if he’d delivered that differently.
• Julee has been treated with microwave ablation, cryoablation, histotripsy, surgery, and a clinical trial, with radiation likely next. Julee has come to understand her cancer isn’t curable, but she keeps finding new options by seeking out sarcoma specialists and other patients living with the same rare disease.
• Advocating for yourself matters. Julee has learned that no two cancer experiences are the same, that a treatment working for someone else doesn’t guarantee it’ll work for her, and that a diagnosis this rare means seeking out sarcoma specialists rather than settling for a local oncologist who may have never treated it.

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Julee’s Diagnosis Facts

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This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

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Five years of right flank pain and being told I was fine

I’m Julee. I’m in Northern California, where I run a large real estate team. I was very busy and active before this, and what I thought was seemingly healthy.

For about four to five years before my diagnosis, I continually had right flank pain for no real reason. I also had malodorous, sulfur-smelling urine that would come and go. I kept going to the doctor, but they would say I’m fine. They didn’t see anything wrong with me. They kept sending me on my way. One time, they said I had heartburn.

It got to the point where I’ve gone to the doctor many times. They tell me I’m fine. It’s obviously something that I have to live with. It started getting pretty bad. Finally, one time I went in, I said, “You need to do a CT scan or something to see what’s wrong with me. I shouldn’t have sulfur-smelling urine, and I shouldn’t have pain that’s debilitating to the point of stopping me in my tracks.” It was even causing me problems sleeping. Finally, they did a CT scan in November 2023.

The CT scan came back normal while I was getting progressively worse

They told me that it was normal and that there was nothing wrong with my CT scan. They found some bacteria in my urine, but said it was normal because I didn’t have any other UTI symptoms, so I was fine. I left that appointment thinking I was fine because they ran the tests.

My father’s a doctor, and my stepmom was a nurse growing up, so I’m not clueless about this stuff. My dad’s a foot surgeon, so it’s not the same, but I’ve grown up in a medical family. Even so, going to the doctor and being told I was fine, I truly believed that. I thought I was okay.

We switched insurance at some point, so I went to a different medical group in January 2024. I didn’t go to the doctor because I had been told I was fine, but it started getting progressively worse. I had to use a heating pad all night and take ibuprofen multiple times a day to try to alleviate the pain. Yet I was carrying on my business and life like normal.

Experiencing a rough night, an urgent care visit, and a call to turn around

It got to a point where I was throwing up. Side note: I also have emetophobia. But I was throwing up at night because the pain was so bad. In the beginning of December 2024, my in-laws were staying with us. They were here for about a month, and I had a rough night. My husband works from home. When I got up in the morning, I said, “I’m going to take myself to urgent care, because I don’t think this is normal. Something is definitely going on.”

I went to urgent care at the new medical group with the same symptoms. Nothing had changed from all the other times I’d been complaining. They ran multiple tests. I didn’t understand what was happening at that point, but on my way home, I got a call back. They said I needed to immediately turn around and go to the hospital, as I needed an emergency surgery because they found a large mass. I pulled over, called my husband, and we went back to the hospital.

Hearing the word “tumor” for the first time

No one at the hospital was available. I sat in the ER for a long time. I hadn’t taken any medication, so I was in somewhat debilitating pain. They had some sort of medical emergency, as a trauma case came in and they didn’t have any surgeons available. They sent me home and said I needed to schedule appointments later. I left frustrated. When they said “mass,” I didn’t know what I thought it was. I didn’t necessarily think cancer. I just thought I’ve got something.

Because my dad was part of this medical group, he called a urology friend of his, and they said they would see me the very next day. I went to her office and she told me that they found a tumor on my ureter, which is the tube that goes from your kidney to your bladder. It was substantial at the time. I asked, “Is this a bad tumor?” And she said, “I’m sorry, but you should cancel all of your plans in the immediate future.”

Escalating fast: “Our lives are never going to be the same after today”

“This needs to be immediately taken care of,” she said. I asked again, “Is this a bad one?” And she said, “I would be shocked if it wasn’t.” At the time, they thought it was on my iliac artery. [Editor’s note: According to Cleveland Clinic, the iliac arteries carry blood to the lower extremities, including the legs, reproductive organs, and pelvic region.]

We live in a small town, and as soon as we started heading home, about 10 miles from my house, she called and said, “We’re going to escalate this. We reviewed it with my colleagues, and we’re escalating it to the next higher division in our organization.” I kept driving home. Ten more minutes go by and I get another call. She says, “You know what, I’m going up yet again. We need to get you seen by oncology as soon as possible.”

When I heard oncology, it all hit me. I told my husband, “Our lives are never going to be the same after today. This is bad.” We got home and she said, “If it were me, my sister, or my best friend, I would tell you that you need to go to the specialist in the Bay Area.”

Getting major surgery without knowing what I had

She said she’d arrange a referral. At the time, it was UCSF. I called and got scheduled there. That was on December 5, 2024. At that point, nobody knew for sure. It looked like cancer, but nobody could say one way or the other.

Then I had my big surgery, but even the surgeons didn’t know yet what it was. Beforehand, the surgeon said, “We’re going to get you back on your feet. We’re going to take care of this. I think you can live a normal life after this,” because at that time, they only saw one tumor in my abdomen. I had a big surgery in January 2025.

I didn’t know at the time that the pathology would take as long as it did. I thought that I would wake up from surgery already knowing what type of cancer I had or whether I had cancer at all. That was not the case. When I woke up, they said they got clean margins, but they still had to send it to pathology. I also wasn’t aware that the longer it takes for pathology to come back, the worse off you probably are, the weirder your case is, and it’s not great news. I didn’t get the results back before we were released from the hospital.

While I was in the hospital, they had to place a stent from my kidney to my bladder. They had to remove a partial portion of my ureter and reimplant it, so I had a catheter and a stent from my kidney. They started weaning me off those while I was still there. I also had a huge 12-inch incision on my abdomen.

While I was lying down, I couldn’t move my left leg; it was numb. They said, “Oh, it’s probably from the epidural,” because I’d had an epidural and a nerve block during the surgery. They turned that off, and it wasn’t coming back. Now I’m lying in the hospital with no use of my left leg, and I can’t move, because it turns out you can’t move without your abdominal muscles or your leg. It makes it pretty difficult to do anything, literally. You’re very limited at that point.

They couldn’t figure out what’s going on. I couldn’t get a regular MRI because I had a temperature probe in my abdomen for the stent, so I was limited on the kind of tests they could run. They did a CT scan while I was at the hospital and saw something on my liver. I’m like, “I’m still here, I’m not even released from the hospital after surgery, and you’re already telling me there’s something on my liver.” They said, “We can take care of it. It’s going to be okay. Everything’s going to be okay.” Again, we didn’t know what I had yet. Now I can’t walk, and my life has drastically changed from the day before.

I ended up getting released after about a week. I came home and hadn’t been eating very much. They had me on a medication to stop spasms in my bladder. I was home and trying to eat. My husband had gone to the farm, so he left me by myself. My friends had been there with me, and I had a walker. I could shuffle myself to the bathroom.

Being home alone, experiencing a fall, and calling 911

My husband left to pick up my medications the day we arrived home. We weren’t prepared, by any means, for me to not be mobile. I needed a shower chair and something over my toilet so I could sit down. I was so naive that I didn’t think I would need those things. I thought I’d come home and be laid up for a little bit. I had no idea how limited my mobility would be coming home from the hospital.

He drove off, and as I saw his car heading down the driveway, I thought, “I’ve got to go to the bathroom. Oh no. What am I going to do?” When I stood up, my phone dropped and I couldn’t pick it up. I shuffled my way to the bathroom because I felt like I had diarrhea. As I was in the bathroom, I immediately started feeling sick. I didn’t have a phone, my husband wasn’t there, and I couldn’t get myself up. I was stuck.

By the time he arrived home, I had been vomiting profusely. I couldn’t stop vomiting. I ended up passing out on the toilet. He called for help, but he couldn’t pick me up. We were such a mess, as we weren’t prepared for this. We didn’t have the equipment at home to be able to do this. Even my bed was too high. He ended up calling 911, and I was taken to the hospital. Turns out I had a bowel obstruction.

I was in the hospital with no food or water. For many days, they couldn’t figure out what was causing it. There I was, unable to walk, with a bowel obstruction, and unable to have food or water. I was in the hospital for about eight days. About the seventh day, they figured out that the medication they were giving me for my bladder spasms was stopping my colon from working, so my intestines weren’t processing. They took me off that. I came home and I was wasted away. I had lost so much weight during that time. I was depressed. I couldn’t move and do anything. It was ridiculous. It was very hard during that season.

Getting my diagnosis of leiomyosarcoma and hearing I had 18 to 24 months to live

I went to my oncology appointment, which ended up being in March. On February 8th, I got notification that I had leiomyosarcoma, which I had never heard of. I wasn’t even saying it properly.

They had told me they got clean margins and that it looked like they got everything, but there was a lymph node that they weren’t sure was encapsulated or not. I had no idea what any of this meant. I asked, “Did you get it all?” They said, “Yes, we believe so.” I was like, “Okay, good, I’m fine. Then I’m going to be fine. I just need to get this leg back, and I’m going to be okay.”

We went to my oncology appointment in mid-March 2025. I met with my new medical oncologist at UCSF. He’s like, “I think there’s something on your liver. It’s very concerning. We need to get an MRI and see what that is.” I don’t know why I asked, but I said, “How long do I have to live? What does this look like?” And he said, “18 to 24 months.”

At this point, I still had tubes coming out of me. I still had the catheter and the stent. I was still using a walker. I couldn’t even sit on the chair because I couldn’t physically get myself onto it. I was leaning against a seat, using all my strength.

How he said it and why words matter so much

When he told me this, I started crying. I was probably sobbing at that point. He said I needed to get my stress in order and get myself in check, basically. I was like, “I hate you. You’re an awful person.” I put a lot of anger toward him during the early stages, because I was thinking, “This guy doesn’t know me. He doesn’t know anything. Why would he say this to me?”

How he chose the words he said to me was devastating. I wish he would have said, “We have no idea. It doesn’t look good, but we have no idea. We’re going to do everything we can to save your life.” Had he said that, how it would have been received would have been substantially different than what I heard.

It changed some things for me. I always relate things to real estate, because that’s my life. I remember telling my team that it matters how we deliver the news and the information, and how we choose to speak, especially about things that may seem so easy for us, like when an offer got rejected, or there are problems with the house. It matters for the person receiving it. We need to be cognizant about how we say things, because words matter. That would have changed pretty dramatically how I felt about my life at that time. I went home from that appointment feeling like my life was pretty much over. I was devastated.

Feeling jealous of curable cancers and finding long-term survivors

We moved through some things. At that point, I learned that I have a fairly chemo-resistant cancer. There are very few chemotherapy drugs that will work on it, and it was aggressive and rare. All these are not-good things. It sounds so crazy to say, but I found myself jealous. I know that sounds absolutely absurd now, but I remember at the time thinking, “If somebody has a curable cancer, I don’t have that as an option. That’s not an option for me. Now that I had a liver metastasis as well, I’m toast. I’m pretty much cooked.”

I found a support group online that was quite helpful. I found out a lot of things, and I did find some long-term thrivers, which I think is important. It’s not likely that I’m in that category, but it’s still possible. It makes me sad, but knowing it’s possible is so powerful. If you Google something, you think, “Oh, I’m going to die.” I had a 4 to 5% chance of survival, which aren’t very good odds; I wouldn’t bank on that. How do you go from being a normal, healthy, 48-year-old, to dying soon? That’s a lot. [Editor’s note: According to Cleveland Clinic, leiomyosarcoma survival rates depend on several factors, like tumor size and location, how much of the tumor can be removed through surgery, and whether the cancer has spread and how far. Survival rates are only estimates and can’t tell you how long you’ll live or how well you’ll respond to treatment.]

Hearing stories about people who have made it is helpful for your own well-being. Finding those people who had what I had, who made it through, and were thrivers. I found some people who said they’re looking at LMS now as a chronic illness, and I thought, “Wow, that’s good.” It’s a lot of what they call a whack-a-mole kind of strategy, where something pops up and you take care of it. I was like, “Okay, I can do whack-a-mole.” I feel so grateful that I live close enough to sarcoma centers that I have access to Stanford and UCSF. I could drive to LA and have even more sarcoma centers available.

Why going to a sarcoma center matters

It’s already rare, and there are many subtypes of sarcoma even within that. Chances are that my local oncologist would have never even seen leiomyosarcoma. They don’t know what to do with it. You need to go to a center that knows how to treat you and how to help you.

Telling my oncologist what I needed from him

It sounds cocky to say, but I’m a well-liked person. People like me. I have no problem making friends. I’m pretty used to connecting with people deeply and easily. That’s my experience with everyone I’m around and has been my experience in life.

I ended up telling my oncologist, “I feel like you were annoyed with me when I cried. I feel like you don’t even like me as a person. I need to know that you want to do everything you can to save my life. We are in this together, and I need you to be with me on this.” And he apologized.

The doctor who grew on me

I think it was quite helpful that I had that conversation with him, because when I met him in person after that, now I adore him, and I’m very grateful for him. He fights for me, and he’s a fantastic doctor. From my latest treatment, I’ve gained quite a bit of weight. I said, “I’m the only chemo patient alive who’s gained 50 pounds on chemo. I’m totally the opposite.” I joke and say I’m like a ball now: bald head, round body. I see him on Zoom, and I was sitting there with my husband and son, and he’s like, “Well, what’s up?” And I said, “Well, my weight.” And he said, totally straight-faced, “I can see that.”

My husband, my son, and I were laughing. It’s not an okay thing to say. He sat there, and even after all of us were laughing, he still wasn’t quite getting it, which made it even funnier. At this point, I’ve decided that’s how he is. It’s not a me thing; it’s a him thing. I think he’s a very kind man and a good doctor, fantastic.

I think of him very differently than I did early on in my diagnosis. But that’s the way he is. When he first told me that I had 18 to 24 months to live, I don’t think he meant it to hurt me. It wasn’t meant that way. He was just being matter-of-fact. That’s the way it is. I do still think about that all the time.

A liver metastasis and learning what interventional radiology could do

It turned out I did have liver metastasis. I didn’t even know about an interventional radiologist. I’d never heard of it as a profession. I adore them. I absolutely feel like I owe my life to interventional radiology at this point.

I had a microwave ablation on my liver first. That was successful; that was on segment six. For my type of cancer, they don’t say in remission or cured; they say no evidence of disease or NED. I was NED for a few months.

Undergoing histotripsy and being one of the first in the Bay Area

Unfortunately, I got another liver metastasis. I had the fortunate opportunity to have a fairly cutting-edge new treatment called histotripsy, which uses ultrasound technology. It’s noninvasive, so there was no surgical incision, no insertion point, and no needles or anything. I had a histotripsy in November 2025 that we thought was successful. It was seemingly successful. I was something like the ninth patient in the Bay Area to ever have this procedure done. I was so grateful to even have the chance to have that. I felt blessed that it was an option.

Fast forward a couple of months and I learned I had lung metastases. They found three lung nodules, but they were very slow-growing, and nothing too exciting was happening with those. We said we’re going to watch and wait and see how they progress.

Mistaking a new symptom for a pulled muscle

I thought I’d pulled a muscle in my chest from Pilates. Usually when you pull a muscle, you recognize what movement you did that made that happen and it hurts immediately after. I didn’t have that, but I had the uncomfortable pain of a pulled muscle, so I assumed it was from Pilates. I thought I did some weird movement.

It went on for a week. It wasn’t getting better. Then my right hand started going numb and my fingers started getting tingly. I thought, “This doesn’t seem right. This doesn’t seem like a pulled muscle,” so I told my husband. He comes with me to everything, so when I say I’m going to go by myself, it’s not like I’m demanding that. I said, “I’m going to run up to urgent care quickly, have them do an ultrasound or something, and see if I pulled a muscle.”

When I went to urgent care, they said, “Oh no, you have to go to the hospital.” I went and, of course, it’s never a quick experience. This is my local community hospital, so it’s small. I went on a Friday night. I went in at the end of the night; they ran a CT scan and found a large mass in my chest.

Finding out I’m basically full of cancer and a month of new metastases

What they said at the time was multiple suspicious lesions in my liver; basically, I’m full of cancer. I had a scan a month before, and none of this was there. I thought, “Oh my, I’m definitely dead girl walking. I’m going to be dead in six weeks at this rate. A month ago, I didn’t have anything, and now I have all of this.”

You go into desperation mode. I was calling around. I have one on my kidney as well. I have a 1.4-centimeter lesion on my kidney. We spoke to interventional radiology again, and they didn’t know what to do at first. They looked at the results and said, “Good news: It doesn’t look like your liver. It all looks like healing lesions. It doesn’t look like you have anything new in your liver. But we definitely need to do something with your kidney.” Because I wasn’t getting contrast on my chest scans before, they could go back and see my chest tumor all the way back to September, the month before.

A trial at Stanford that didn’t work

It had been growing for quite a while. I was actually relieved to hear that, because then I knew that this didn’t all grow in one day. Because of all this, UCSF said I needed to try this trial at Stanford, as it was going to be my best bet. I went through the whole process. It turned out unsuccessful; everything grew. The ones on my lungs and my chest shrunk, but everything else grew, and those are the most life-threatening at the moment. I went back to the team at UCSF and had my kidney ablated. That was successful, and I had an easy recovery. That was great. So I’m not on any chemo right now.

Losing my hair for a treatment that didn’t work

I used to have long, beautiful hair. You don’t realize how hard it is to lose your hair. Then to lose your hair and have it not work also sucks.

I have 50 wigs probably at this point. It feels so phony wearing them. I don’t feel like myself. They’re hot and itchy too. I go around bald now. This is my life. This is authentically me. I say all the time: You should be yourself, whatever that is. When I put a wig on, I feel phony. More power to the people who don’t feel that way and wear them, because obviously it looks substantially better to wear a wig. Hair definitely helps your attractiveness level, by far.

More procedures ahead and getting a third opinion at City of Hope

I have another liver procedure scheduled. Then I may or may not have a pancreatic lesion that we have to address. I’m probably starting a new chemo, trying to see if something else will work.

I went down to City of Hope to get a third opinion. They all agreed, I guess you would say. I’m not in a great place. I have a pretty poor prognosis, in fact. When I reached out to City of Hope about whether they would consider doing surgery, they said I’m not a candidate because I have too many metastases at this point. That’s hard to hear, because you feel like they’re giving up on you. It’s not what they say, but that’s what it feels like, as if they don’t want to spend resources on you and you’re past the opportunity to spend their energy trying to save you, so they’re not going to even try. I know that’s not what they mean, but that’s how it feels.

More quality time with family and my perspective living with cancer

I’ve asked everybody if I’m near the end of this, and everybody said no. My labs are good. I’ve oddly had probably more quality time with my family in the past year and a half than I’ve had in the decade before, so I’m grateful for that.

Early in my diagnosis, someone said to me that cancer’s a gift; quite honestly, I wanted to punch them in the face. What a horrible thing to say to somebody with cancer. People also say a lot of horrible things to you when you have cancer. Usually, it’s, “Oh, my fill-in-the-blank person in my life had cancer and she died.” Thanks. I’m not sure how that’s helpful for me, but thank you for sharing.

At this point, I don’t want to say I completely think it’s a gift. There are pieces of it that are a gift, I guess. You get perspective; that’s a gift you definitely get with cancer or any terminal illness. When you know that your time is limited, you choose to spend it differently, who you spend it with, and what you do with your time. All of it looks different.

At the end of the day, your family, your friends, and whoever it is that you love and loves you are the most important way you could spend your time and energy. You definitely have that shoved in your face when you have a diagnosis like this. Luckily, I did gain that.

If that’s what people mean by a gift, I suppose, yes, there are some gifts you can find within it. There are positive things you can find in anything. But I would rather not have found them out this way. There are many other ways I wish I could have gotten perspective.

Looking back at the scan they missed

There was a 4-centimeter mass on my ureter in 2023, and they told me I was fine. And I was not fine. I got a CT scan with and without contrast at the second urgent care visit. I didn’t have contrast on the one I’d had previously. But we pulled the scans and gave them to the surgeon, and he very easily identified a 4-centimeter mass.

Four centimeters is not small; that’s pretty large. My prognosis would probably be better had I gotten it removed in 2023, before it had spread. Realistically, I probably had this for many years prior. This probably went back to my very first symptoms. It was blocking my ureter a bit, so the bacteria in my urine were also potentially caused by a blockage, being held up in my kidney.

It’s frustrating to think that an organization quite literally stole your chance at life. They didn’t give me cancer, of course. I had been complaining about this for many years. The difference in my outcome could have been substantially different. The reality is that with sarcoma, if it’s caught early and removed, you have a substantially better chance of it not coming back. They stole my chance at a cure. Prolonging my treatment probably took my life. It’s frustrating.

I went back and looked at my chart. It’s constantly complaining, saying, “Are you sure nothing’s wrong?” I’m not a wimp. I wasn’t able to function on a day-to-day basis. They’re like, “If your pain gets too bad, go to the emergency room.” Sometimes it would come and go. It was difficult to make that call.

I grew up with a doctor, and I’m a Gen Xer. You don’t go to the ER unless you’re in dire need. None of my pain ever got to the point where I couldn’t function. I could still carry on. Yes, it was painful, but I didn’t feel like I was dying and needed to go to the emergency room. Going back and reading through my chart, it said, “43-year-old female, right flank pain. 44-year-old female, right flank pain. 45-year-old female, right flank pain. 46-year-old female, right flank pain.” It’s constantly the same thing. You wish people would listen and take some action. It’s very frustrating.

Finding support from my husband, my son, and my friends

My husband and I have been married for 26 years now. He works from home. Before this, I was pretty social. During the COVID pandemic, we used to joke that it was my husband’s dream come true, because I’m stuck in the house with him all the time. He’s the only person he sees, and he’s a happy camper. I was constantly miserable because I needed to go out, be with people, be active, and be busy. We’ve had a bit of a flip. He’s a great support because he’s here helping me all the time. He’s very kind and a great caregiver, very helpful. He’s probably my biggest support system, definitely.

Now, I don’t want to go anywhere. I’m bald and people look at you weird when you go out. I don’t want to even go in public anymore. It sucks. Plus, after gaining 50 pounds, I don’t have any clothes that fit. I literally wear sweats all the time because I can’t even squeeze myself into my other clothes.

I don’t want to, but I’ll go anywhere that sweats are fine. Before, I was in professional clothes, in heels, and all dialed in. When you’re on chemo, your nails fall off and you don’t have any eyelashes. Nothing is the same about me. That part is rough.

I have great friends. They come over and help. I have a girlfriend whose mom owns a fruit stand, so she brings me a big box of produce every week. The care of people doing that kind of thing is so helpful. It’s hard when people ask, “What do you need?” You don’t even know what you need.

What you need is for them to show up. You need people to be with you: “Hey, I’m going to come. We’re going to walk down to the mailbox and back,” or, “I’m going to come bring you a treat.” Those times when people don’t ask, they just do it. I had a girlfriend who said, “I’m going to pick you up. We’re going to get pedicures.” I didn’t want to, but I wanted to. If she’d said, “What do you want to do?” I probably never would have said I wanted to get a pedicure. But her saying she was going to pick me up and this is what we were doing is the type of support that’s helpful. I’m grateful.

My son has been great. He lives in Denver, and he’s been coming back for like a week a month. We ended up building an apartment on our house so it would be available for him, and that’s been great. He’s a full grown-up, so it’s nice having him here. Every time I have a procedure, my son and husband stay in the room with me. They don’t leave. They’re there all the time. I’m incredibly grateful for my family and my friends who stick by me.

I had a girlfriend who, after we’d gone for a walk, said, “You might look different, and it is different than it was, but you’re the same person inside.”

Telling people the nice things you’re thinking

You feel so different, that I was like, “Oh, good. Thank goodness that I haven’t totally gone.” I say all the time that I don’t want to let cancer steal me until cancer steals me. Hearing somebody recognize that I was kind of the same felt so good.

I tell my son all the time: If you have something nice to say to somebody, don’t think it; call the person and tell them. Her saying that to me made such an impact. A lot of times, we think something, but we don’t say the words, so the other person never gets to hear it. You have no idea how much that person might have needed to hear that. Even if it’s something small, if you’re thinking something kind or nice about someone, tell them. If I could change anything in the world, it would be that. Tell people more of the nice things that come through our heads. I think it would make a difference.

My message for someone newly diagnosed

Because the statistics are what they are doesn’t mean that you’re a statistic. Don’t think that because it happened badly to somebody else, it’s going to happen badly to you. Unfortunately, just because something good happens to somebody also doesn’t mean something good is going to happen to you either.

You are individuals with cancer. If I’ve learned anything, no two stories are the same. One drug can work for one person and not the next. Immunotherapy could work for somebody and not the next person with the same type of cancer.

Advocate for yourself. Say what you need to say and look for other options. If you have something rare, make sure you go to a center that knows what they’re dealing with and knows what the options are. Find other people who have it and see what they’ve been doing. I’m grateful that I learned about histotripsy, microwave ablations, and PEMF treatments, things I never knew were even an option before. You have to seek them out.

You might be at one hospital that doesn’t do histotripsy, so they might not even mention it. You might have a situation where histotripsy would be perfect, but if the hospital doesn’t do it, it may not be on their radar, so they may not suggest it as an option for you. If you’re not researching for yourself, you might miss out on treatment opportunities and options that nobody told you about. You have to find them yourself. I’m very grateful to have found a group of people with the rare disease that I have, who share their experiences and the different treatment options that are available.

Now I’ve had microwave ablation, cryoablation, histotripsy, surgery, and a clinical trial. It sounds like I’ll be having radiation soon. It’s not one and done. You have a lot of options before it’s over.

There have been some hard days, but I’ve also had a lot of good days too. Know that even in the thick of it all, there are still some good days ahead. When I was first diagnosed, I didn’t even think that was going to be possible. One of the reasons I don’t wear a wig is because I don’t look like my normal self, but I still have joy. My life still feels fulfilled, even though things are bad. You can still experience extreme, profound grief, sorrow, and sadness, and being scared and afraid, alongside joy and gratitude and peace, at the same time.

I also have a pro tip: Get stick-on eyelashes, which are very helpful when you have none. It definitely makes a bit of a difference. It’s rough having no lashes and no hair. Get your eyebrows microbladed early on in your diagnosis, so that at least you’ve got something there.

Holding peace and fear at the same time

I didn’t know that was possible, to have those things at the same time as you go through life. I thought you were either feeling peace or fear. But you can be at peace with the fear, to some extent. Knowing that’s possible is probably helpful to other patients going through it.

I even found people who were on hospice multiple times who ended up getting off hospice, and they’re still here. One woman calls herself a cockroach that they can’t get rid of. I was like, “Oh, man, I’ve never wanted to be a cockroach so badly in my life.” I never thought I’d say that, but I do hope to be a cockroach. That would be amazing. How great would that be?

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This interview has been edited for clarity and length. The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story. This content does not replace professional medical advice.

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