My Story: Symptoms to Treatment
As a senior in college studying pre-med and acquiring an EMT license, my passion for healthcare collided with an unforeseen twist when I received a brain tumor diagnosis. I didn’t really realize it but I had been not feeling like myself for years. I had constant and frequent headaches that increased in severity every passing month, trouble focusing, slight visual impairments at certain times, I couldn’t retain information for the life of me and eventually, when things started getting very severe, I lost the ability to read and started having conscious seizures and then finally, a grand maul seizure which landed me in the ER for the first time—as a patient—which is where I was diagnosed. Below is my story from symptoms to treatment.
The Symptoms
I had my first focal seizure in January of 2022 - it lasted about 15 seconds but felt like a lifetime. I was overwhelmed and realized I could only produce an involuntary noise which sounded like “ba-ba-ba-ba-ba-ba.” My boyfriend didn’t hear it and I didn’t want to freak him out so after it was over I was like, “woah…I think I just had a panic attack.”
“Woah … I think I just had a panic attack”
He asked if I was alright and that was that. I was scared but convinced myself it was nothing but I couldn’t forget about it. I didn’t have another one for 10 months. The next time I had a focal seizure, was in October. I began to notice I couldn’t read or comprehend test questions on my midterm. The seizure was exactly like the first one so I was convinced I had another panic attack. This time, I had roughly 10 during the test and I kept having them that day, then 15-20 the following day and 20-30 the day after. For two weeks I was having ~100 cluster seizures a day all while thinking they were panic attacks. Fortunately, they didn’t effect my motor skills so I could still drive — at first.
I told my teachers about my struggles and they advised me to contact the disabilities office to see if I can get extra time on tests so I wouldn’t be stressed. At this point, I was doing horribly in my classes, I went from straight A’s to barely passing my classes. It was obviously not normal and I could tell my teachers just thought I wasn’t studying enough. Disability services granted me the extra time with the requirement as long as I saw a therapist once a week for 8 sessions. Deal.
The “panic attacks”—seizures—got so severe that I didn’t feel safe to drive. I stopped going to class to take a mental health break for a few days thinking I was just overwhelmed with school, work and studying. On November 1, I had a therapy session over zoom where I had my first grand maul seizure. I was on my couch and started to feel overwhelmed then my right hand cramped up so hard I wanted to cry.
BOOM! I fell off the couch onto my back and everything went to black. My therapist called an ambulance and the next thing I knew my phone was ringing and my brother was calling to see if I was okay. I had no idea what happened. Still confused, the EMT’s walked in my house and escorted me out just after my dad and boyfriend arrived. It wasn’t until later I recalled my hand cramping and passing out.
I was in the ER for around 5 hours but they wouldn’t discharge me until my heart rate settled to a normal pace. It wasn’t going down because I was scared, I had never been a patient in a hospital before. Every time a doctor would walk into my room, my heart rate would rise and set off the alarms—which were scary. They did a CT of my chest and found nothing. I asked if they would do a CT of my head and the doctor said that there was “no reasoning to do a CT of my head.” But, I had given myself a black eye and knew I didn’t hit my head on anything and finally had a feeling it was a seizure. But, since there was no one to witness it, it could not be confirmed as a seizure. They discharged me to go home and get some rest.
The Diagnosis
My boyfriend and mom drove me home, I ate some dinner and went to bed. Then, in the middle of the night I was woken up by EMT’s surrounding me and forcing me to walk down the hallway onto a gurney. Another ambulance ride later I was back in the ER, this time with a confirmed seizure so I received a CT of my head.
“…the CT is showing a large blurry area…”
Around 4am, they took me down to the MRI room in the basement of the hospital. I knew the man who was working the MRI machine from working as an EMT. He was always a grumpy guy unless someone was diagnosed with something critical, then he would tell jokes. I waved hello, then they started the MRI. Afterwards, he told me a joke. I laughed, because I didn’t want to be rude, but I knew there was something really really wrong.
As they were rolling me out I caught a glimpse of the MRI scan. There was a large mass in the left frontal cortex of my brain. When the nurses wheeled me back into the ER room I could tell they were looking for available rooms in the ICU. I told my mom and boyfriend what I saw.
A few hours later they had a room available and wheeled me up to the ICU. A neurosurgeon walked in at 9am with her purse around her shoulder. She stated that I was going into brain surgery to remove the mass in a few hours and asked if I wanted to know the risks of surgery. I said no. She quietly informed my parents and brother and proceeded to prep for surgery. My dad promptly called our good family friend, who lives in Seattle, who happened to be one of the top radiation oncologist’s in the world that specializes in brain tumors—crazy right?—and informed her of the situation. She stated that “first things first, get it out…we’ll deal with what happens later” and that she knew of my neurosurgeon and I was in good hands. The anesthesiologist assured me that she’d allow the neurosurgeon to operate on her own daughter which was comforting to hear. I sent out a few texts, told my parents I loved them then was rolled into the operating room. They mapped my head for about 3 hours then the surgery took 3 hours. It was all females in the room - girl power!
The surgeon called my mom when I was out of surgery and told her “the surgery was a success and she is going to have so much room up there, I can’t believe she didn’t seek medical help before.” My surgeon told me about the surgery, showed me pictures of the MRI and what she was able to remove. She also told me not to look up ANYTHING. I read through some text messages and waited for my parents, brother and boyfriend to arrive. I was asking some questions to the surgeon when my mom came in. She said I acted like nothing happened.
I was on pain killers but remember feeling so much better and felt like there was so much less pressure in my head. The doctors and nurses said I would be in the hospital for a couple of days to a week which I was fine with. After visiting hours were over, the nurses had to wake me up every hour to ask me various questions such as my name, the date, where I was and to preform different coordination tasks like touching certain fingers to my nose. The next morning when visiting hours opened up my nurse said that if I could feed myself, walk and use the bathroom that I could leave the hospital. Everyone was a little confused but I was like “Cool!” So, I kept walking around the hospital wing.
I was discharged that day, less than 24 hours after brain surgery and I walked out of the hospital without any assistance.
Once I got home I walked over to my neighbors house and hung out around the pool. I was on all kinds of medications (Keppra, steroids, antibiotics, and Norcos) so I was a little slow but otherwise fine. I did notice I had a little bit harder time forming/finishing sentences so I would start talking and then sometimes forget what I was talking about mid-way through. But, that only lasted for a couple days.
I was dead tired but the steroids made it so I couldn’t sleep and I had to take them every 4 hours—including night time—for 7 days. This was the worst part. The biopsy would take 14 business days so no one had any idea to what was in my head and I couldn’t sleep. So all I could think about was the possibility of dying. It was awful and terrifying. The third day was when I started crying for the first time. The lack of sleep and sheer terror was something out of a movie. This couldn’t be happening to me.
I slowly just took everything one step at a time. Wake up, have some tea, try to eat something, take a shower—with a shower cap—, go for a drive with my dad, hang out with my dog and cat, go for a walk, lay awake at night trying not to think about the fact that my first surgery ever was a craniotomy. Repeat.
I called my family friend before I got any diagnosis back just to check in with her because I was honestly going crazy not knowing. She informed me not to stress and just take it day by day. Also, that I will be getting referred to different oncologists and that it is standard procedure for any foreign large object in the brain. I felt like this was vital information because If I wasn’t told this before anyone else told me it was standard procedure, I probably would have lost it.
How long was it there?!
By the 10th day, I was able to get my staples out and see my neurosurgeon which was a relief. AND fully—gently—wash my hair WOOT WOOT. I was excited to see her because I had quite a few questions. Such as, why is it numb behind the staples? And is it normal to hear the liquid in your head? Also what can I do and cannot do? Etc. Also my major question, “How long was it there!?” All she could tell me is that I most likely wasn’t born with it… Aka no one knows. Which was honestly a bit disappointing… she did say that it was very slow growing though. She also informed me she got me several referrals to oncologists and neurologists in the area. It is important to note—again—that she referred me to oncologists before anyone even knew if it was cancerous. This is just standard procedure when ANY foreign mass is in the body or brain. So, like my family friend said, I was referred to oncologists before the biopsy came back and I saw them before my full biopsy came back also.
I was referred to oncologists before the biopsy came back.
Around the 14th day, my neurosurgeon called me at 7pm to tell my part of my results. She said it was an Oligodendroglioma Grade 3. Cancerous but treatable with radiation and chemo and in a very ideal area for treatment. I called my family friend to tell her what the diagnosis said. She stated “ok great, could be worse, could be better, but its treatable with radiation and a chemotherapy pill. Don’t stress, you’ll lose your hair in the area they do the radiation, that is normal, and likely not permanate. I know its scary, but you’ll have a great summer.” I had no idea what it meant but hearing my friends words was very comforting, again I took it one day at a time, one step at a time. So I said, “Ok, whats the next step?”
The Treatment
The first person I was referred to was a radiation oncologist at Ridley Tree Cancer Center, Dr. Suh. He was informative and explained my different radiation options and what would be the best fit for me as a young adult. He made the referral to California Protons Cancer Therapy Center in San Diego, CA. Important to note, you need a referral to get treatment done here.
The next person I was referred to was a medical oncologist. Right off the bat, I didn’t like his energy. He made me feel scared and not confident in my treatment plan. I asked him about what types of chemotherapies were available and he told me about Temodar and his preferred choice of chemotherapy—PCV—and that it WILL make me infertile, immunocompromised, and lose my hair. “But don’t worry, if you can’t handle the hair loss we have a lovely lady down stairs that shaves heads for free!” and “It’s what I HIGHLY recommend!!!” Over Temodar that has none of these side effects? …um, nope.
Absolutely. MotherF-ing. Not.
I left and never went back especially with his nurse calling me several times a week to get me to do PCV. I finally told her not to call anymore and that I will not be picking up her phone calls and was referred to someone else. I was referred to another medical neuro-oncologist from UCLA who I was not impressed with. He also tried to push the PCV also and told me the side effects of it. Nope, thank you, next.
Next up: a neurologist. He was great, very upbeat, positive, and informative. He did a few tests and recommended me to get an EEG (electroencephalogram) which measures seizure activity—just to be ultra-safe—in case there was any scar tissue left that could trigger a seizure after the surgery. He also changed my dosage of Keppra from 1,000mg to 750mg and eventually down to 500mg which made me feel SO much better.
The last person I was referred to was a fertility specialist. Initially, I was against doing any fertility preservation. It took me two weeks to change my mind but the more research I did the more I found out the true “we genuinely don’t know” nature of chemotherapy on fertility. I don’t know if I want to have kids in the future but I know I don’t want that kind of choice taken away from me. We met over Zoom to go over some options and he was professional and knowledgeable so I agreed to come into the office for some blood tests and an ultra-sound. After the office visit I decided to go forward with the egg retrieval. Honestly, the whole process sucked. Constant blood tests, ultra sounds, injections and mood swings. It was pretty awful. Finally, the time came to do the retrieval bright and early—4am—on December 23rd, 2022. The whole thing took about 30 minutes and I was out of there before the sun came up. The days afterwards were hell. Literal stinging, burning, painful, swollen hell. And don’t even get me started on trying to go to the bathroom. I was told to eat lots of salty foods and electrolytes and rotate taking Tylenol and Advil every few hours. Of course I got a rare condition OHSS (ovarian hyper-stimulation syndrome) which made everything so much more painful. I almost had to go to the hospital to have the fluid in my stomach drained. Just my luck but fortunately, that didn’t happen. It just took much much longer to recover after that. But hey, I got 47 viable eggs out of the whole process so… worth it?
Right after the egg retrieval recovery I went down to California Protons Therapy Cancer Center in San Diego, CA. and met Dr. Hattengadi-Gluth in person. She was great. Honestly, I can’t say enough good things about her. She was so positive and confident in her work I knew I was going to be okay in her hands. She genuinely cared about me and what I wanted as far as treatment goes. If she disagreed with anything, she could explain to me why she disagreed instead of just saying “its just what we do” like most other doctors did.
She referred me to another medical neuro-oncologist at Moores Cancer Center at UCSD in San Diego. I met with her that week. She told me that “PCV was old-school medicine” and that “they don’t even recommend PCV anymore” also that “Temodar was their new gold standard,” like music to my ears it was exactly what I needed to hear. She went on to tell me my life expectancy. Which there is no way I wanted to hear that. Its hard for me to type out. But she said I had a 50% chance of living another 12 years. Im sorry, but what? I don’t want and don’t need to hear that because its not happening. It instantly put a bad taste in my mouth. After that, she just dropped the ball. I didn’t receive my medications on time, I got a general antibiotic that she couldn’t explain WHY I had to take but just that I HAD to take it. She also didn’t put in orders for my blood tests. Noped out of there as fast as I could. I told Dr. Hattengadi-Gluth about everything and she instantly told me not to go back to her and referred me to—yet again—another medical neuro-oncologist—who is my current medical oncologist—Dr. Piccioni and his PA Tiffany Turpin. They’re both great. Now, my radiation oncologist and medical oncologists are both the top doctors in their field at UCSD.
“Temodar is the new gold standard”
If you’re wondering why Dr. Hattengadi-Gluth didn’t refer me to Dr. Piccioni in the first place is because she knew the previous medical oncologist from UCSD was specifically interested in young adults with brain cancer and thought that we’d be a good fit for each other. Obviously that didn’t work out.
Also, I feel like it is important to mention but Moores Cancer Center is nice but DEPRESSING. It’s huge and packed full of people. The lab portion of the hospital is the worst because it is so busy. I asked Dr. Hattengadi-Gluth if I could get labs done anywhere else and she recommended me to go to her lab place that she gets her labs done at which was much better. The less time I have to spend in that center the better. Just not my cup of tea.
After that meeting I went back to the Proton Center to get fitted for my mask for radiation. The center was gorgeous, clean, and best of all completely empty. I walked in and the workers were attentive and got me in right away to my appointment. Proton Radiation is extremely precise so I needed to have a custom mask fit to my face with a custom pillow that I put my head in so I do not move during the treatment. The mask fitting was a little odd but it was over after about 30 minutes then two weeks later I was ready to start treatment on January 23, 2023.
My first proton treatment was a little nerve wracking. I didn’t have to change or take jewelry off and was escorted into a giant room with a table and 4 nurses. It was very intimidating. The room rotated around a table that kinda of floated in the middle of the room. I felt like I was in the death star. They clipped me into the table and asked what music I wanted to hear during radiation. I said “you choose?” So, they started playing Dreams by Fleetwood Mac. Honestly, laying on a table that was moving around a rotating room listening to Dreams made me laugh so hard. What is my life.
From then on for two months I lived in San Diego and just cruised around. I went to radiation every day for 20-30 minutes and took 140mg of Temodar at night before bed. Then went to the the zoo, beach, dinners, hung out with friends that lived down there, tried to find the best fish tacos etc. It was pretty boring to be honest. I definitely missed home but I was able to come back every other weekend. They did the radiation schedule from 8am-8pm so I could choose when best worked for me so I could have a full weekend at home because they were only open M-F. Friends visited from Santa Barbara and we just tried to make the most of it. I went mini-putt golfing almost everyday which was awesome and hilarious. I even bought my own golf balls and putter, it got real competitive.
My hair started to fall out about 2-3 weeks into the radiation which was a bummer because I love my hair. But, oh well. I kept making jokes that I looked like gollum. It only fell out in a small patch so I just wore hats and you could hardly tell. I got gifted so many hats so I had a lovely assortment to choose from.
After radiation was finished on March 8, 2023 I was wished a teary goodbye and a “hopefully well never see you again”—which I couldn’t agree more with—then I was back in Santa Barbara that afternoon. It felt great to be done with radiation and return back to normal life for a month until my next round of chemo. I slowly got less fatigued and was able to do more activities and have more independence which felt really nice. Especially getting my drivers license back! I was way too thrilled about that haha.
I started my first round of “maintenance” Temodar at 265mg in April 2023. The higher dose was rough. I could smell it on my skin and had to take several showers a day but I found that drinking a lot of water made it way more tolerable. So, I started drinking around a gallon of water throughout the day whenever I took the chemo and it helped massively. In May, they bumped it up to 345mg and that wasn’t too much worse than the 265mg. Then in June they stuck with another 345mg and it hit me like a truck. I couldn’t get out of bed for 4 days and my appetite was gone. But… I also didn’t go to the bathroom for 3 days and couldn’t drink water so that was probably why I felt so crappy. But after the next blood test, my platelet level was dangerously low so Dr. Piccioni backed off the amount of Temodar I was prescribed. So now, I’m just taking 255mg once a month for the 5 days—hopefully until the end of the year, fingers crossed. It would be nice to stop the chemo before I go back to school and finish my degree in January. But, again, I want to be safe and make sure I don’t stop too soon.
It is April now and I just finished the March months round of Temodar a few weeks ago. The lingering effects are there but significantly less every day. I would say I felt 50% better the day I stopped and 60% better the day after but still very tired and low appetite. Around the 2nd week is when I get very low energy for a week because everything (WBC, RBC, platelets, etc.) do a nose dive then I feel relatively normal afterwards for a week until I start my next round of Temodar on April 25, 2024.
UPDATE!!!
I just got the okay to stop Temodar on May 7, 2024 so… I am done with treatment! I am so thrilled. Lots of celebrating to do! I can’t wait to start feeling like myself again.
Ill keep you updated as things move forward!