Ashley’s Recurrent Grade 2 Brain Cancer Story

After graduating from Oregon State University, Ashley moved to Arizona to begin her life as an elementary school teacher. Shortly after her move, Ashley experienced a grand mal seizure that led her to the hospital. It was here that she learned at 22 years old she had a brain tumor. 

Now, over a decade later, Ashley has experienced cancer recurrence twice and continues to outlive the average life expectancy for those with brain cancer. She’s also defeated the odds by having a son after recurrence and chemo-radiation.

Ashley shares her cancer story with us, including why she chooses to look at the positives, how coaching cheer and art have helped her on her cancer journey, how she dealt with deficits post-brain surgery, and her hope that more people in the brain cancer community will share their stories.

I want to find people that know how this is and if they have any words of advice. I want to share as well. If anybody wants to talk or hear about what I’ve gone through, and what I’ve done to help myself, I would absolutely love to talk and help you along the way.

Ashley B.

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

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Symptoms & Diagnosis

Tell us about yourself

I am Ashley and I have gone the last 10 years, almost 12, with a brain tumor. It’s been a journey. I have gone through about 3 brain surgeries. I’ve done a lot of different things along the way. 

With all of that going on, I’ve always had a positive mind through it all. No matter what happens or what I hear, I just always put my foot forward and have that mindset of, okay, what’s next? What are we going to do? How are we going to do it? Let’s get it going. 

What were your first symptoms? 

»MORE: How To Tell Your Family and Friends You Have Cancer

What was the diagnosis?

It was a lot of MRIs, CT scans, and trying to determine what exactly they found and trying to figure out why I had a grand mal seizure. They discovered a large mass in my left temporal lobe. It could have been many things, so they decided to do a biopsy, a little mini surgery to learn more. 

A couple of days after getting there, they did the surgery and found out that it actually was a brain tumor, a glioma, which is the type of brain tumor that starts there. It’s not starting anywhere else, it’s only in my brain. 

They needed to know more and do a full-on resection and remove as much as they could. That’s the first step in any type of brain cancer. I had the little biopsy surgery and was wondering, okay, what’s next? They knew it was definitely a brain tumor, but that was it. We still didn’t know exactly what kind and there might be other things going on. We needed to do a bigger resection surgery from there.

How did you react to your diagnosis? 

Moving hospitals and doctors

After the first week at the smaller hospital, they explained to us what they were going to be doing there versus at a different hospital. I don’t want to say a better hospital, but it was more equipped with brain surgeries.

Saint Joseph’s Hospital at the Barrow Neurological Institute in downtown Phoenix. People from all over the country would go there, so I was very blessed to have it happen down there with such a well-put-together brain tumor hospital surgery. I’m glad it was there at the time, as silly as that is, but it was almost meant to be. I feel like everything happens for a reason. I met my main surgeon there, Dr. Peter Nakaji. He was absolutely amazing. He made me feel so comfortable. 

Surgery

What was the preparation for the surgery like?

We had to go through quite a few steps beforehand because we didn’t know if it was going to be awake brain surgery or if I’d be asleep during it. It’s hours and hours of surgery when they do any type of brain surgery because it’s very detailed and specific because you don’t want to mess up any other part of the brain. 

We had to go through quite a few tests. I had to do a Wada test which turned off that side of my brain and had me see what kind of memory I’d be going through because it was located in my temporal lobe, which is based on short-term memory language speech. I went through all of that, had quite a few meetings, and luckily I did so well through all of that. I was able to sleep through the full surgery, which I was relieved. Part of me was okay with it if it did happen, but the fact I was asleep, you feel a little more at ease. 

How did the surgery go?

The surgery itself went absolutely amazing. It ended up being a lot quicker. It wasn’t as long as they thought it was going to be because of the type it was. It was easier to resect and he was able to get about, I would say, 95% of the tumor out. There were still going to be tumor cells left. Any type of brain tumor, unfortunately, is incurable. There are chances that it could be in remission for however long, but it’s very unlikely to get all of it out. 

Experiencing deficits post-surgery 

I did come out of it and had quite a few deficits. I knew I’d be losing some vision in my upper right eye. That I’m used to, but the hardest part for me was the memory. Especially after just going to college, getting my degree, ready to start my life, my career, and get things going. 

After the surgery, I joked around with my doctors [it was] like 50 First Dates. We joked that I’m going to be that. At home, after I left the hospital and was recovering for quite a few weeks, I was watching Grey’s Anatomy every single day and I could not think of the name of the show. 

Even if stuff like this does happen, instead of putting myself down, I try to think of the positives and I’m not saying it’s easy. I’m not saying I enjoy having to do all this, but it definitely has given me the strength and the fight.

I had to – wanting to be an elementary school teacher, specifically, first grade or second grade – I had to go to classes and be with that age group because of my speech and memory. I had to use different games and puzzles to relearn what everything was called. I knew what the words were, but I couldn’t put it together with what things were. For instance, with my phone, I would have been like, “Oh, is this a TV remote?” I would get things mixed up. I would want to get a glass of water and would say, “Hey, can somebody get me a fork?”

I would always joke with stuff because I didn’t want to be a Debbie Downer. It took at least a year or 2 to get back into the motion of not standing out in front of people with my wording and memory. I still do have short-term memory loss. In college, I would always get called out because of how good my memory was. I had a photographic memory. I lucked out, so some of my friends joke with me, that now I have a normal memory. But it’s not. It’s definitely a struggle, but it’s something I can deal with and have worked to live with and make better.

How has having someone close to you deal with medical issues helped you on your cancer journey?

Why did you decide to go on watch-and-wait?

Moving near family to have support 

After that, I was still living in Arizona and my parents and brother moved down and rented a house to be with me. Once I was getting myself back to feeling better, my parents came back up to Portland and I had to as well. As much as I wanted to stay there and teach and live my life, it just wasn’t going to happen. Unfortunately, because of everything I was going through, I needed support around me. So I moved back up here and was doing whatever I could to work on my memory system and recovering from that until it did grow back at the very end of 2016, early 2015.

Recurrence

What are some symptoms you experienced before the regrowth occurred? 

I didn’t necessarily feel the regrowth happening, but I was having so many deficits in general from the surgery and the tumor itself, to begin with. Luckily, I did get MRIs pretty often so they were able to see something going on at the time. 

With seizures, it wasn’t just the one time. I would say [I had] at least 2 a year back then. I’d get things here and there and I’d be like, oh gosh, is this a sign? What’s going on? At the time I did have migraines, but it wasn’t as bad as it ended up becoming. In the 2 years or so before the regrowth happened, it was a lot of focusing on getting better and then learning to become this new person. There was also, with memory, teaching myself and learning words again. It sounds silly because I felt, I’ve already done this. 

I always tell myself, it could have been worse. I was lucky. I look back now, I didn’t have the nausea that I do now. There are a lot of things that I am grateful for that I like in life. Before this all happened, I looked at life in the view of, I’m going to do this and that, and I have all these goals and whatnot. I now look at life differently where little things mean so much. The simple things in life are amazing to me now.

How did you react to discovering you had a recurrence?  

I tell myself that positivity has such a massive effect because at least for me, just having that mindset and not thinking about death has done more than I have asked for.

I tell myself that positivity has such a massive effect because at least for me, just having that mindset and not thinking about death has done more than I have asked for. I know it’s going to be hard, but I’ve never had that on my mind because, despite it all, I don’t want to have that.

Chemo & Radiation

What chemotherapy treatment were you on?

Temodar. I started in May, which is the chemo that I luckily wouldn’t have to do at the hospital. It was a pill form and I would take that every night during the first section of chemo and radiation together. I’d be taking the chemo every day and then I’d be doing radiation Monday through Friday for 6 weeks. 

It started off well. It wasn’t until halfway through that I started getting crazy tired and did a lot of bed rest. I’m pretty social and had a lot of questions from family and friends, it was hard communicating with them when I needed to just chill at home and rest and relax. I started a little blog to keep everybody up to date on how I was, and what things were like. That was really fun. That was back when blogs weren’t really a thing in 2015. That’s another way that I had something getting me through it.

Did you have side effects from your cancer treatments? 

Aside from the side effects, the nausea, the throwing up, and getting through that, I was proud of myself. Once I did the 6 weeks of chemo and radiation, I had a 21-day break where I wasn’t on anything. It was right around my birthday in May. I got to have a birthday celebration to celebrate finishing that [treatment] and doing well. That was really nice. 

Once I had to go back on chemo, it wasn’t every single day. It was a higher dosage but only 5 days for 6 months. I had to stop it after the fourth month, in September. Right after I had finished doing it, I had a very bad reaction and they weren’t exactly sure why this happened. It’s not common but it was really bad. I had my whole body break out in hives. I couldn’t move my body. I ended up in the hospital, and they said we have to stop it. There’s no way we can continue this. I’ll admit, I was scared thinking, oh, no. Is it going to work still? Do I need to finish it? I had that in the back of my head being worried and not exactly sure what to expect. 

On the good side, it slowly went away after not having that in my system anymore. What they determined is my body just said, no, we’re done. We can’t take it anymore. It’s a bummer, but at the same time, I had a good result in the end. Once that came through, it was all worth it at that point. 

I have my lovely radiation mask that they had to create for my head. Monday through Friday when I’d go in, I’d have to wear this lovely thing while they did it, which I still have.

»MORE: Coping with Radiation Burns

Do you know if the chemo or the radiation caused that reaction?

I’m not sure what was giving me nausea, aches, and pains. That’s also when I started getting horrible headaches and migraines. [The doctors] have a feeling it’s not necessarily related to that type of head pain but nerve damage that was going on because it was only on this side where everything was going down. 

It was not a fun thing to go through, but it’s one of those situations where I did it. I got through it all. I had ups and downs, but I always tell myself, it could be worse. Even though I had these unfortunate events, it still turned out positive and I’m very thankful that happened.

How often did you have cancer treatments?

It was 2 separate ways of doing it. The first one was 6 months straight of a very low dose of chemo every day, along with radiation being Monday through Friday for 6 weeks. It was all of that together. Then it was the 21-day break where I got to rest and get myself back together. After that is when I started 6 months of chemo at a way higher dose, but only 5 days at the beginning of each month.

Describe your experience with radiation

I do like having my full head of hair. I was nervous because there was a chance that it might never come back. I was very thankful that it did.

What were the results of your scans after chemo-radiation? 

After having to stop chemo and recover from the hives, I would do my MRIs about, every 3 months for the first year. Once that got cleared, everything was good, no regrowth, and the cancer cells were going down rather than up. Everything was looking good. After the first year, I got to do only 2 MRIs a year. That’s how it’s been unless I had a seizure or something else was going on. Then I would have to have an MRI to keep up with what was going on. That’s how it was for quite a few years. I was very lucky for about 6 or 7 years in remission, which I’m very thankful for because that’s a long time with brain tumors.

»MORE: Chemotherapy FAQs & Patient Stories

Did you suspect you had a recurrence? 

Year after year of having good results from my MRIs, I got in the rhythm of expecting I’m good, I’m not even going to worry about it or deal with it. I did have a lot of pain in my head. That was probably the hardest thing to deal with daily. Aside from that, there were no changes in my memory or deficits that had changed at this point in time. I was doing well for the most part and going with the flow, enjoying what I could, and going with it. Until it came back again.

Pregnancy & Cancer

What was finding out you were pregnant around the time of your recurrence like?

This was a huge part of my life that was not expected. When I was going to go through chemo and radiation, when I found out that there was regrowth, I was pregnant. I had just found out I was pregnant. I don’t know if it was from the stress because I had actually said, I don’t want to have an abortion. I want to wait. Even if it were to get worse, I just want to wait until the baby’s born before I do any treatment. Unfortunately, I did have a miscarriage shortly after. It might have been meant to be or from the stress, but that was really hard. Looking back, that’s why I didn’t take the option of saving my eggs. I told myself back then, if it’s meant to be, it’s meant to be but I just am not in a place right now to go through that and wanted to get the tumor done before anything. 

I never really expected to be able to have kids. I knew I could, but it was very unlikely. I’ve had, on both sides of my family, pregnancy issues. I knew I’d already had issues, to begin with, but this made it more unlikely. Believe it or not, a year after going through chemo-radiation, I got pregnant. That blew my mind and was the happiest I’ve ever been. The greatest gift of my life is my son, his name is Brody. He’s definitely what keeps me going every day. No matter what, he’s what I fight for.

»MORE: Fertility After Cancer Diagnosis

Tell us about your son

He was born in September 2017, he will be 6 years old in September this year. He knows what’s going on with me, but he’s like me – if I’m not feeling good, he gets me up. Even when I have my headaches or head pains, he is the medicine that gets me away from that and on to other stuff. He’s my number one and just the greatest. I can’t even imagine not having him now, which is mind-blowing. He’s a little smarty. 

He knows what’s going on because he has gone to my doctor appointments and he’s seen me do surgery because I’ve had surgery since he was born. He’s seen a lot. It’s similar to what my brother went through. Having his uncle going through what he was going through, it’s almost like he’s known this all from birth or when he was younger and he doesn’t really know any difference. That’s been super helpful for me.

»MORE: How to Talk to Kids About Cancer

2nd Recurrence

How did your doctors discover your third recurrence? 

In December 2021, I had my doctor call me on the phone to go over the results of the MRI. Originally he said, “You’re good.” It’s always short and sweet, and that’s what happened at first. I’m very lucky in having so many good doctors that I cannot thank enough. The next day, he went through it a second time and saw something that was very small on a few scans, but it was still bugging him. [He was] questioning what was going on. He wasn’t exactly sure if it was dead cells or tissue that was popping up, but he did want to view it sooner than later. Instead of waiting the 6-month, normal period of time, he decided to do it. 

It was a very hard time, just watching, waiting like what is this? Is it just a scare? Is it regrowth? What is going on here? I knew something was up with the way I was feeling and had this aura that something was going on. 

I tried to almost not listen to myself, but at the same time, that’s just not me. I’m not the type that can just set that aside, move on, and not do anything about it. I’m like, okay, I got to research. I got to see what’s going on because it’s been a while. I stopped doing that for a good amount of time, especially raising Brody. I wasn’t even thinking about it other than daily living it. It was definitely a hard couple of months. 

Once they did that second MRI that’s when they said, “Yeah, it’s definitely something. We’re not exactly sure what. We need to do surgery again.” This was not a massive surgery like before. This was another type of small biopsy to determine what was going on. Has it changed? Has anything else happened? That’s what we ended up doing about a month and a half later in April 2022. That’s when I had my third brain surgery.

How did your third brain surgery go?

That one went pretty well. It was short because there wasn’t much going on. I was only at the hospital for 5 days or less. The surgery went really well. They only did a small resection to see if the tumor was at a higher grade level. [I had] the normal issues that I deal with pain-wise, like nausea. 

This time was different because I now had a son. Even with cancer and everything I’ve been going through, he will always be my number one no matter what. I didn’t think much at the hospital about how I was doing. It was more, I need to call and see how he was doing because I didn’t want him to see me like that. I still was able to talk on the phone with him and make sure he wasn’t worrying. Luckily he’s extremely close to my parents. They’re, his best friends, so he had a great time with them. Knowing he was okay made me feel much better. 

Once I got the results from the surgery, it was the biggest relief yet. I don’t want to hear there’s regrowth, that’s not a good thing. But it’s not a higher grade, which is very rare. With brain tumors, they normally will grow into a higher grade over time. In the back of my mind, I knew that was something to be prepared for. But to hear it’s still low grade, [I had] so much relief, even though it’s not a good thing to go through at all. I feel like I sound silly saying that, but that’s just how I am. I’m realistic, but try to think of the positives rather than dwell on the negatives.

Discovering her brain tumor type had changed

When they said, “Nope, you don’t have an oligodendroglioma anymore. You now have a grade 2 astrocytoma with an IDH1 mutation.” I’m like, okay, what is this?

You have to go through the blood-brain barrier to do any effective treatment to fight it. It’s the most intense area of your body and trying to take 100% out through surgery is not possible. If you do, you could lose your will to walk, see, or speak. You would not live a quality life and it would not be worth it. That’s why it’s never been a full 100% resection. Even if you could get a lot out, there are cells that are not viewable through the greatest microscope possible. That’s how life is, unfortunately. But they are making changes. 

In recent years, they have done a lot with genetics which is incredible. It got me to dive right in and learn as much as I could and research. When they said, “Nope, you don’t have an oligodendroglioma anymore. You now have a grade 2 astrocytoma with an IDH1 mutation.” I’m like, okay, what is this? Why is it now an astrocytoma? 

How did your diagnosis change to an astrocytoma? 

Because I don’t have the 1p/19q co-deletions – you have to have those to have an oligodendroglioma – I always was not on that side of it. Even though that was well-known for oligodendrogliomas, they still thought it was an oligodendroglioma. But they did say it’s rare that you don’t have the 1p/19q co-deletions, which is a part of that. Since all of these changes they’ve made, because I don’t have that, I now am considered an astrocytoma. 

The 2 main mutations that I have that have caused a brain tumor is the TP53, which is a gene or a mutation that causes a lot of cancers, not just brain tumors, but many others as well. That was the first one that was very relevant. I also found out I have this IDH1 mutation. That is why I’ve had a low-grade tumor for so long. 

These mutated genes have developed somehow. It’s not the type that is inherited at all. It’s very rare that this happens. I did get lucky that I have the mutation type rather than the wild type because the wild type is not a good one to have. Aside from having the news, yes, your tumor is back. It is still at a good level to deal with where normally in the past at this point, I would probably have to go through my second round of radiation. 

What treatments did your doctors recommend for your astrocytoma?

The weird thing with my chemo is they still aren’t sure if I should ever try that type of chemo again because of how it affected me. Now with all of these changes, they’ve found a new type of chemo that’s actually used with a certain type of leukemia. It is a certain type of leukemia that it’s very similar to brain tumors. It’s been used on different people over the last 2 years or so. Since mine is at that level and still very slow growing, they decided we should try this because this might be something that is positive and can help me. 

There have been a couple of other people with my main oncologist that have had really good results with a few of his other patients, and I was like, yep, I want to try. I’m the type that’s very open to anything and everything, at least to try, even if it’s not the best or outside of the medical realm. I try to eat healthy and exercise, especially coaching cheer and being a mom. I love yoga. That’s my go-to and making sure things around me 24/7 are helping as well. Not just everything at the hospital, like medications and all of that. I try to do what I can the most I can and hope for the best.

Because of the amount of regrowth and where I’m at after having the biopsy, we decided to try the new chemo that’s approved for leukemia patients. I’m not sure of the type, but I know it’s leukemia chemo. It’s called TIBSOVO. It’s not FDA-approved for brain tumors and it took a while to get the approval. So in August of last year, it will be almost a year since I started the TIBSOVO that I take every night, 250-milligram pills. 

Have you had any side effects from this new chemotherapy treatment?

The nausea was hard at first. I had to have my body get used to it. After 4 months or so, I finally got to stop taking nausea medicine. I still get the nausea here and there but I’ve learned to live with it. Other than that, the head pain and tiredness haven’t gone away. I do get fatigued and it’s hard to put myself through things that were so easy before.

»MORE: Managing Nausea and Vomiting from Chemotherapy

I get bummed out or mad at myself, like, you got to push yourself. But at the same time, I need to tell myself, you got to chill out and rest because it’s not a good thing. 

The difference between this type of chemo and the previous one I did is it’s not the type that is destroying the cancer cells immediately and gets rid of it all. This is a type of chemo that stops the growth and over time starts to kill it off. Think of chemo as what affects your whole body, but it’s more directed at this one mutation. That’s why it’s similar to leukemia because that’s very common in a certain type of cancer there. It’s the type of chemo that can go into and pass the blood-brain barrier and be directly associated with the cancer cells in the brain.

It’s stressful because it [requires] another watch-and-wait period of time. It’s not right here, right now. I do have my MRIs every other month, my blood work, and my EKG. I have to keep up and get all of that taken care of to make sure things are going well and so far, so good. Usually by now, it should have stopped the growth but from what I’ve heard, it hasn’t quite done that yet. It’s definitely slowed the growth, but it hasn’t completely stopped it. I’m praying my next MRI will have a good outlook on that. If it doesn’t, I might have to start something else, but I’m not going to worry about that just yet.

Reflections

What has helped you on your journey with brain cancer? 

Having that positive mindset has done so much and helping others is a huge thing for me. I wish there were more people that would speak out that have this. That’s the main reason I wanted to meet you guys and get my word out, because there’s really not much about brain tumors, which is hard on me. 

I search for people online. I have a friend in South Africa, 2 friends that I’ve talked to that are in Ireland and London, and another friend that lives in San Diego here. So I’ve met people along the way, even if it’s across the country or across continents. But it is hard to find people that talk about it, which has been the hardest part for me because I want to find people that know how this is and if they have any words of advice. I want to share as well. If anybody wants to talk or hear about what I’ve gone through, and what I’ve done to help myself, I would absolutely love to talk and help you along the way. 

I’ve been the oldest among everybody. There’s one that was close to me just a couple of years after I found out about it, but for the most part, it seems to be 3 years ago, 4 years ago, or 2 years ago when they found out. I feel like I’m the mom and I’ve gone through everything. I’m more than happy to share. I’m a talker. I tend to talk too much, but I am open and willing to do what I can.

Finding purpose in coaching cheer and through art

 

When COVID was getting better and right before I found out that the cancer was back is when I was getting myself ready to do my own little business of selling art. I did have to put that on hold for a while, but I still want to get back out there and do all that. You’d be surprised how easy it is to learn and how fun it is to have that to calm you down. Whether it’s macrame or painting, there are so many things you can do in the realm of art,

I went to high school at Westview and graduated in ’07. Then in college, I did cheer for a couple of years at Oregon State. After that, while I was doing my own thing for a couple of years and dealing with treatment, I was like, I want to get back into cheer. I decided to start coaching. 

The coach that I had back at Westview, was still the head coach who’s amazing. She’s like a sister to me now, one of my closest friends. We’re actually going to see the Taylor Swift concert in 2 days together, so I’m excited about that. I started coaching with her back in 2017 when I was pregnant with Brody. The first place he went outside of getting home from the hospital was cheer practice. He has been at the practices many, many times. The girls that are graduating this year, I’ve been with them since they were seventh graders which is crazy because they’re like my little babies.

I’ve always wanted to help others. That’s been a huge passion of mine. Not being able to teach because of the deficits, my brain tumor, and the surgeries, I still try to do what I can. Doing cheer, coaching, and helping them, especially when we went through COVID, helping to support them and do what I can has been huge, and I appreciate all of that.