My Doctor Said My Brain Tumor Was Inoperable (My Cancer Diagnosis)

Hinzugefügt: 2026-06-04

[00:00:00]So, my worst fears were now coming true.

[00:00:02]What do I do now? I'm going to die. You know, it's one thing to say you have brain a brain tumor. Um, and then another to say you have inoperable brain tumor. The actual symptoms started happening. Um, I noticed probably like after my daughter was born, I noticed that when I would dry my hair, I'd be holding out my hair dryer and my arm would just feel really heavy, like I couldn't hold it up. I'd brush my fingers of my left hand across my steering wheel and they tingle a little bit. I'm like, that's really weird. And then on my left side, and then I noticed that I couldn't move the fingers of my left hand quickly. Like compared to my right hand, there was things I couldn't do. But again, it's really easy to brush those kind of things off. And I think most people would. I just had a baby.

[00:00:45]Like I said, I was carrying everything on my left side. My baby, my diaper bag, my purse, everything was on my left side. And I thought, well, I could have a pinched nerve in my neck. Uh could have something wrong with my shoulder.

[00:00:58]And that's kind of what we thought. So I went to a chiropractor and he's like, "Oh yeah, that's typical that I can fix that." But it it just got worse. It never got better. I became immediately terrified and um because it was very obvious to me that there was something wrong with my left hand. It was so different from my right hand. And when you start googling, which we all do, weakness in one limb, only three things come up. And it's ALS, which is terrifying, MS, and brain tumors. And like I said, I had no symptoms of a brain tumor. Typical symptoms would be a seizure. I think that's how most people find out they have a tumor is a seizure.

[00:01:33]I never had a seizure. I never even had a headache. I'm a very proactive person.

[00:01:37]I'm really good at advocating for myself. So, I just went to my primary and I said, "I really want to see a neurologist." And they just sent me a referral. And I went to see him and I was telling him about my symptoms and he said, "Let's get a a MRI of your brain and your spine." So, we had to wait a few weeks for that referral to go through for an MRI. you know, all this process takes time. And in that time, I'm just freaking out, just totally freaking out. Um, you know, panic even just getting worse. And so then I finally get my appointment to go get my MRI. And they first did the MRI of my spine and that came back okay. And my doctor and I had agreed that because I was still nursing my daughter, we wouldn't do any contrast die, which would be typical. Um and they said he said that you know if something comes back like worrisome we can always go back and do it with the dye. So when I'm in the middle of my brain scan they came in and said we have to use the dye and I was like oh crap something's wrong. And I said no no no I'm not doing that because I'm nursing my daughter. And they said well no we have to do it. So of course I am bolted to a table. I can't move. And my mind is spinning and I'm crying and I'm freaking out. not only can I not nurse my daughter, but there's something wrong with my brain.

[00:02:53]And at that point, it was my brain. So, I was freaking out, um, crying and just, yeah, panicked. So, it was really scary.

[00:03:01]The plan is to take the actual film to my doctor on Monday and then we'd look at it together. Well, I'm waiting in the waiting room for them to bring me my film and they said, they came out and said, "Your doctor's on the phone." So, you know, that's something really bad.

[00:03:13]And he gets on the phone with me, said, "You have a mass in your brain." And I was like, and my my just shut down. I didn't like I went blank. I had no idea what to say. The first and only question that came to me was, "Is it in an operable location?" That was the only thing that could come to my brain at that moment. And then I said, "How big is it?" And he said, "4 cm," which is like the size of a golf ball, I think, or like a small lemon. So I was like, "Oh my god." So when they hand me the film, which is like like massive sheets of X-rays, and I go out to the parking lot and I'm looking at this tumor and it looks huge.

[00:03:50]So that was just a terrifying, unrealistic experience for me. Very surreal. And I had to go home, rush home because my my husband had to pick up my son from school. My daughter was napping. So I had to go. So, we just literally had this exchange in the driveway and I didn't we didn't get to talk about it or anything. It was just like a quick hug. I have a mass in my brain. Bye. That was it. So, while he was at school picking up my son, I'm googling again, hitting the internet for information. Um, and I'm looking up. So, I know I have a tumor, a brain tumor.

[00:04:22]So, now I'm looking up what are what different kinds of brain tumors are there. And you're hoping for the best, which is a menioma, which is benign.

[00:04:29]It's not cancer. and then you're looking at the worst which is glyobblasto which is grade four the most aggressive most deadly kind and everything in between.

[00:04:37]So I decided I'm going to get three opinions. So that was when that journey started of getting three different opinions from different neurologists.

[00:04:44]I've had a lot of medical issues in my past. I've had four miscarriages and I've been through a lot of bad doctors, bad dentists. You name it, I've seen the worst. Um, and so I'm now very proactive about getting multiple opinions and seeing a lot of different people and what is your strategy going to be? Uh, what do you think it is? What what is the best case scenario? And so I'm I'm very much into getting a lot of different opinions. So that was going to be that was a no-brainer. When I decided to have surgery with Cedar Sinai, it goes really fast. They're like, "Let's go. Let's set up your do your surgery appointment right now." They said they could take up 95%. And so I had my surgery and when he got in there, you know, it was supposed to be a 4-hour surgery and he came out of surgery 2 hours early and told my family um he couldn't take it out. Don't let anyone ever touch this tumor, it's completely in her motor area. Whereas before he had said it was my preoter area. So motor area means if they take it out, you're permanently paralyzed on that side.

[00:05:43]Preoter means you'll have some paralyzation, but it would be temporary or minor and you can potentially get it back. Um, so he said, "It's all in my motor in my motor area. Don't touch it.

[00:05:52]Don't want anyone touch it." And that's how we that's how we left it. I was having seizures during surgery, he said, whereas I'd never had a seizure before.

[00:06:00]I was absolutely devastated waking up from brain surgery and finding out that they couldn't take out any of it was extremely disappointing. You know, again, I I I I'm lost. I'm just completely lost. What do I do now? You know, what do I do? I'm going to die.

[00:06:16]You know, it's one thing to say you have brain a brain tumor um and then another to say you have inoperable brain tumor.

[00:06:24]Two totally different things cuz I was told it was operable great inoperable terrible. So that was extremely disappointing. I had a wonderful oncologist at Cedar Sinai who came in smiling and said everything's going to be great. I was like wow his attitude and bedside manner was so great that he really made me feel good. We still didn't know yet if it was cancer or not.

[00:06:46]We wouldn't find that out for like four more days when they have their tumor um meeting on Wednesdays. And so we went in after that meeting and found out that it was they had found some tum some cancer cells grade three as it was called an anoplastic astroyto. So grade three cancer which is an aggressive cancer sadly. Um so that was devastating also you know now we know it's like okay chemo radiation all that stuff now has to happen quickly. When I found out it was cancer, I was with my mom and my dad and my husband. We all started crying because it's devastating. Brain cancer.

[00:07:18]You have operable brain tumor, non-operable brain tumor. Now you have brain cancer. That's the I can't imagine anything worse. The kind of chemo that you get for brain cancer is different than any other kind of chemo that you would get for any other kind of cancer because it has to pass through this bloodb brain barrier. I did start radiation and chemo. The chemo is a pill that you take um so concurrently with the radiation. And so I started taking this pill. Um, gradually I started becoming allergic to this chemo which sucked because I started breaking out hives all over my body. By the end of the fifth week, 4 and 1/2 to 5 weeks, I had to stop taking it. Also, my brain started swelling because of the radiation. The thing about the brain is that there's no lymphatic system. So if the tumor is dying, it's shedding off these cells and there's nowhere for them to go. So, my brain started swelling and swelling and swelling so much that the midline started shifting and the the tumor looked huge, like it had tripled in size. And so, they're like, "Is it growing out of control or is this just swelling?" Um, and and they're you're living in this time where you're not sure if your tumor is growing out of control crazy and you're you're about to die or if it's just swelling and it's something you can wait on. I became paralyzed on my left side because my brain was swelling so bad. I was dragging my leg. My arm was just hanging dead at my side. Um, my face was drooping. I couldn't do anything. It was terrible. It's tough. I got to tell you, it's tough to keep a positive attitude.

[00:08:48]It's, you know, the busyiness of it.

[00:08:50]It's a job. Cancer is a full-time job.

[00:08:52]That's how I describe it because it is.

[00:08:54]You got to set up these appointments and there's there's a radiologist. There's the chemo doctor. There's the, you know, all these appointments. And, you know, I had to go to radiation 5 days a week for 6 weeks. That's a lot. That's a full-time job. And you need someone to drive you because you can't drive yourself. And you know, you're taking chemo now. I've got a baby. You know, I've got a one-year-old child and a six-year-old child, you know. So, that was a whole other job where luckily we had lots of friends and family step in to help us with food trains and food deliveries and people to drive me to radiation and all this stuff. And I started actually after the surgery, I started having regular seizures, which was a horrific nightmare. So, I couldn't be alone even. So, I lost all my independence. I couldn't drive. I couldn't take care of myself. I couldn't take care of my children. So, it was it was a freaking nightmare. And so, you know, that's what you do. Like, what can I control in this completely uncontrollable situation and I can control what I put in my body um and what I do. I tried to exercise when I could, but you know, again, it's just try to sleep. I tried to just take my mind off of the negative stuff. We watched tons of standup comedy. We watched funny series. You know, some friends saw me sent me DVDs of Modern Family. And, you know, we just tried to keep our our humor up. We had lots of tumor humor going on in my house. Um, so it's just about keeping up the sense of humor and the positive attitude and and laughing as much as we possibly could.

[00:10:21]They eventually said, "We have this other drug called Avasten, which I think is used more commonly now, and it's used to bring down the swelling." And so, I said, "Let's try it." This is a horrible life I'm living right now. I can barely walk. I was about to be in a wheelchair.

[00:10:34]I can't use my arm. It worked immediately. I got my movement back. I got my hand back. I was walking fine.

[00:10:40]The swelling went down. So, that was great. I did that, but that's also what just destroyed my voice. So, there's always a give and take with everything.

[00:10:48]But, it did bring the swelling down. And then we could actually see how much my tumor had actually shrunk. And it had shrunk about 25%. Which was great. But the seizures continued. Sometimes I was having up to 12 a day. A lot of them were stress induced and panic induced, but there were also some really big ones like I'd fallen in a restaurant. I was on the ground for 10 minutes having a seizure. I'm completely awake the whole time. So, which is good and bad. I don't fall and hurt myself, but I'm awake during the whole thing. And it's painful and it's scary and you're out of control of your body. You can't talk. You can't communicate. And it's it's horrifying.

[00:11:22]My really happy oncologist that I love said, "You know what? I don't like how this is going. I think you need to go to UCLA. I think they can take it out.

[00:11:31]Which was like, wow, this is amazing news. We went and met with the doctors there and I was able to ask some questions and things like that. And I felt really comfortable. So, we decided to schedule a surgery there, which was so scary. So scary to schedule another brain surgery because it's it's you know, you could die during surgery, you could die after surgery. There's so many things that can go wrong during brain surgery. So, it was really scary.

[00:11:53]Probably one of the bravest things I've done was just go in for another cranottomy. But I did it a year after my first one. I had another brain surgery.

[00:12:02]And I didn't even know this the first time they did it. I woke up with scabs on my head. I'm like, why do I have a scab in the middle of my forehead? Um, you know, and they they screw on this metal halo onto your head. And so you have this these screws going into your skull to keep your heads from not from moving. Um, and they don't they don't really tell you all of this stuff ahead of time. You just kind of find out as you go afterwards. They cut a big circle of your skull and take it off. And then when they're done, they put it back in.

[00:12:33]I have plates and screws that you can feel under my skin. Um, and they put it back on. And because they had done, this was the second time this had been done, I woke up in a lot of pain. I wasn't expecting that. I thought it would be like the first one. Um, so it was very ext they they put like a this like almost like a like um it's a turban but it's really hard because they want to prevent the swelling from happening in your brain. So they it's squeezing your your head. Preot motor is the area that initiates movement. So it it's what there's no so it it makes things automatic. So there's no automatic for me anymore. I can't use my hand without thinking about it. I have to tell my hand go pick this up. Open your fingers.

[00:13:17]Close your fingers. When I walk, I I still will drag my leg a little bit. I have to tell it to lift and go, "Lift, lift your foot, lift your foot."

[00:13:25]Otherwise, I'll just trip over little cracks in the sidewalk. So, automatic is gone. I was walking around bumping into walls because I had no propriception. I didn't know where my body was in space on the left side. It affected everything. I couldn't swallow when I woke up cuz the part of my throat was paralyzed. So, I was getting like thickening powder putting into all my liquids so I wouldn't choke. Yeah. I had to use a walker. I had to relearn how to walk. Um, I had to relearn how to swallow, how to talk. Went straight from the hospital into an inatient rehab.

[00:13:56]After my second surgery, they found out that my cancer was actually grade four.

[00:14:00]There was grade three cells in it. There was also grade four, which is glyobblastoma, my worst fear. And so, again, so lucky they were able to get it out because if not, I don't know I would be here. It increased my likelihood of surviving like 100fold. Your best prognosis is if you can get the tumor out. If you can have a full resection is what they call it, your prognosis is way better. I was lucky in the first place because my tumor, and this is interesting, they thought I'd had my tumor for 10 to 30 years. It was a very slow growing, non-aggressive tumor, and I had a particular genetic marker called Idh1, which made it a slower growing tumor.

[00:14:37]And they have um new therapies just for that particular marker. Who knew? I had this tumor growing when I got married, when I was pregnant, all this time I had this tumor in my head. It was definitely worth it to get out because who know I mean it definitely increased my chances of survival. That's the biggest indicator. It was so interesting because when you go from a place of having an inoperable brain cancer to now not having this tumor in my head anymore, everyone around me was celebrating and they were all happy and they couldn't believe it. And I'm sitting there going, "But wait a minute. I still feel the same. And what happens now? Who am I if I'm not the woman with brain cancer? Who am I now? All the food stops. All the driving stops. All the people are gone.

[00:15:23]And now I'm just here." Like I feel like a bird that's been kicked out of the nest. Like what now? This is it, you know? Like what what happens? You know, now I have to go for MRIs every 2 months to see if it's growing. So that is a whole other panic situation. Is it coming back? Is it coming? Because it's they're known for coming back. It's not.

[00:15:41]They say it's not a matter of if, it's a matter of when. So that's terrifying.

[00:15:45]It's absolutely terrifying. I'm at now like 9 every 9 months. They said I can go a year, but it makes me nervous because if it does start to grow back, which it's known for, you want to catch it early, as early as you possibly can.

[00:15:57]So you never really feel free. This is a recurring cancer. It's considered terminal. no matter what, I'm still considered terminal. And I asked my doctor this rec recently. I said, "Is this something is this what I'll likely die of?" And he said, "Yeah." So, you're never really free from it. It's more of a chronic disease, I would consider it, instead of just a cancer. I still have to deal with the being on seizure medication every day and the the side effects of that. The fear of having seizures, even though I've been seizure free now for a long time, I still have the fear that one could happen, breakthrough seizure. Man, the paralysis is is life-changing. There's so many things I can't do anymore. I can't do anything with my kids. I can't bike ride or roller skate or jump on the trampoline or swim in the ocean. There's so many things that I can't do that, but it's life-changing. My daughter was only one and a half when I was diagnosed. So, she didn't really internalize a lot of what was going on. and she knew that mom decided that whatever I did with my son, I was going to do with my daughter no matter what. So, I really tried to do that. Whatever condition I was in at the time, that's how I would do it. Just the fact that, you know, I'm the the handicap mom who can't do a lot of things that she wants me to do. I can't climb stairs and I can't go downstairs.

[00:17:09]Have been great. Honestly, they help me.

[00:17:11]They help carry in the groceries and they help me up and downstairs and they've been wonderful. They've had to live this life of being compassionate people. And it's I'm sure it's going to change them for life. And maybe that's a good thing. You know, I think that people who have it too easy don't build character. And my kids are very compassionate. They have character.

[00:17:31]They've had to struggle some, not with themselves, but watching me because while I was sick the whole time, I kept a blog. Um, and I talked about everything that was going on with me every single day. Um, it was very cathartic for me and I could share it with everyone in my family and all the people friends that I knew and eventually 300 people started reading it because they would tell their friends and they would tell their friends and I turned that blog into a book. It's called Kat Welcome to Katie's brain.

[00:17:56]When I was first diagnosed, I was looking, you know, you start panicking and you start searching for people to look to for advice or commonality. And I was desperately seeking survivor stories and I didn't want to hear any sad stories. People always come to oh I have my uncle had this brain cancer and he died after this many times. I like don't tell me that. I don't want to hear that story. I want to talk to survivors that my mentality is survivor survivor. I'm going to survive this. And so I would research on I would Google brain cancer survivor stories and there's websites that just talk about survivors. And that's what I focused on. And so I tried to find books with brain cancer stories.

[00:18:36]Nothing. Nothing. And so for me now, this is the book I wish I had when I was diagnosed because there was nothing like that. There's really not because people don't survive. And I wanted positivity and support and survivor stories. And so for me, this book is the book I wish I had. And I think that hopefully that is going to help other people. I got to see my son graduate from high school. It was incredible. I never thought I'd live to see my my kids grow up and grow old. And I'm so fortunate. I mean, I am blessed, beyond blessed. So, I mean, not everyone who has brain cancer gets to live past 2 years. And here I am almost 14 years later. It's a freaking miracle. And I, like I said, getting the tumor out, it was crucial for me. And also I think all the things my attitude and all the things that you you do in addition to standard care. It's just I'm just blessed and I'm I'm just so happy and fortunate and if I die from this, I die from this. But I've gotten to see my kids grow up.