Really, I'm the luckiest girl in the world. Even though I was released from the hospital without any instructions, I have an active and loving family (who in turn have the support of active and loving friends). I was very slow, stupid, and overwhelmed at this time and my mom essentially began cold calling hospitals to announce that her daughter has a brain tumor and ask for help.
Compounding my fortune, I also had both health insurance and disability insurance, which meant that I had some income while I was unable to work.
These few things - the people, the insurance, and the small income - meant that I had the luxury of actually being able to rest, process, and recover.
This page is about my recovery from surgery and the diagnosis I received. About the planning, the questioning, the rapid learning, and the waiting.
Leaving the hospital felt great - colors were never so bright, sounds so clear, smells so intense. What was initially great wound up feeling a little like a six month acid trip. I was filled with wonder, but easily overwhelmed. It felt like the surgeon took a filter out of my brain so that every sensation was weighted equally. If I was cold, could hear music, and someone started talking, I would start to panic. It was too much, nearly unbearable.
Even an accompanied walk to the end of the block was terrifying - the birds, the neighbors, the sunlight, the sounds of traffic - everything was full volume, extremely bright, fast.
I was exhausted. Conversations were tiring, lights were dizzying, I couldn’t look at a computer screen for long.
Though I chatted with visitors, watched a little television with the volume low, glanced at the internet, went to appointments, and went on walks, I spent most of my time for six months in a quiet bedroom.
I couldn't drive, I couldn't handle making phone calls or keeping appointments straight. I certainly couldn't work. It was probably five months before I walked into a store (friends kindly took me out for an hour or two before depositing me back at my parents’ house).
But I did not need to go grocery shopping, cook, arrange transportation, or schedule appointments. I did not need to worry about insurance or money - I had a job to go back to. I write this again to acknowledge that I was in the minority. Most Americans have a lot more pressure at this stage than I did, and I have no idea how people survive this post surgical period without the help I had.
I was floored by the love that people showered on me. I cried a lot. Not because I had a brain tumor and a bum arm but because of the cards and the flowers and the visitors. I received prayers and well wishes from so many wonderful people I am still in disbelief.
During my initial weeks out of the hospital, my family waited and worried. Slices of my tumor had been sent to a lab to be studied, and we wrung our hands (my hand) waiting for a diagnosis.
I was terrified about what would come next. All I knew about brain tumors was what I learned from TV. Googling “brain tumor” is not especially helpful, there is so much information and so little of it is useful without a diagnosis to whittle the field down.
After nearly a month, the neurosurgeon’s office called me with a diagnosis: oligodendroglioma, grade II. I also got the information that my tumor has a genetic mutation - a codeletion of the 1P and 19Q chromosomes.
Now I had a place to start googling. My takeaways: the tumor is rare, mostly impacts men in their 50s, and is benign compared to other tumors, meaning that the average life expectancy from the time of diagnosis is seven years.
There were three treatment options: surgery, chemo, and radiation. More research is being conducted to find other treatments (some seem promising) but that was it for a low grade glioma in 2012 (and as I write in 2021).
Mom scheduled appointments for me at the hospital that made the diagnosis. The hospital insisted I see their neurosurgeon before I could see their neuro oncologist. They wanted to first rule out the possible need for more surgery. I was terrified at the thought of having another surgery - I was still traumatized from the first - but I now know this is common practice.
The hour-long drive to the bigger hospital was draining for me (even though I was just riding in the backseat). The neurosurgeon there had a nasty cold (I don't remember his name, but I can't forget that). He looked at my MRIs and decided that my surgeon had done a good job. No more surgery necessary!
I then met with the neuro oncologist who reiterated something I had heard my neurosurgeon say weeks before: radiation is an option but it is a last resort. Because it is so brutal and dangerous, you can’t really do it twice.
So no (more) surgery, no radiation (yet). He recommended I start taking Temodar (or temozolomide) - a frequently prescribed chemotherapy for brain tumors - immediately. In fact, he indicated that I had waited a long time (again this is maybe a month post surgery) and that Temodor is much more effective when started immediately post op.
I felt like I had lost my chance. We were too slow! I would need to start chemo that day if I wanted to survive this mess. The neuro oncologist set me up with a nurse who would oversee my care and make sure I was connected to the team throughout my treatment. (This was a relief considering the don’t-let-the-door-hit-you-on-your-way-out treatment from the first hospital).
I sobbed on the way home. I was bone tired and it was imperative that I start treatment ASAP. My window was closing. My mom was chattering about getting another opinion. I begged her not to make me. I told her that we were already behind.
But sometime during those foggy weeks, a friend of mine (well, at least someone I had known in high school) had messaged my sister on Facebook. He told her that he was doing his residency in neurosurgery at a great hospital three hours away and to reach out if there was anything he could do. My mom had already decided that we needed as much good information as possible before starting any further treatment. She was already second guessing my surgery. My friend's message was the dealbreaker: we were going for a second (third?) opinion.
I reluctantly agreed. While we waited for that appointment to come (I believe it was in October), I prepared to start taking the Temodar. If the newest doctors agreed that it was the best plan of action, I was ready. I had my teeth cleaned and ordered the script.
My newest surgeon (my friend’s mentor) was wonderful. He agreed with Surgeon 2: my surgery was good, no need to do that again. I then met the neuro oncologist who had a different opinion than the previous one. He did not recommend starting chemo, but rather taking a wait-and-see approach. The tumor was slow growing. I told him about the urgency I felt to start treatment - that the previous doctor said the chemo would be less effective further out from surgery - but he assured me that we didn't need to do anything right away.
He explained the lack of research on my type of tumor and how the first ever long term studies on it were concluding. Those results looked promising and would most likely determine my course of treatment. He was apologetic that I was dealing with this, but sweetly said that the timing of my diagnosis couldn’t have been better. His humanity and willingness to show me the science soothed my heart and my mind. I would wait. I wouldn’t begin treatment until an MRI showed tumor growth.
Until then, I could continue to work on healing before introducing new trauma to my body.
I would rest and go to occupational therapy. I would get an MRI every three months - enough time in the world of tumors to see growth, but not so much time that it would grow wild and out of control. As soon as changes were detected in my MRIs, we would begin treatment (hopefully armed with a little more information). We would use this interim to observe - see how aggressive the tumor was behaving - and I could start peeing on pH strips and taking megadoses of vitamin D if I wanted to try alternative therapies.
Thus began another waiting period. I spent exactly six months at my parents' house. I read while I was there. I didn't have the attention span to read books, but I would read articles and bits and pieces of things. I enjoyed a column that was running in the New York Times titled "Life Interrupted" by a woman a little younger than myself who was battling blood cancer at the time. The title has stuck with me.
I did not read the large heavy books about cancer that lots of well wishers gifted me. I had no interest in dry tomes about pathologies nor chicken soupish stories about people overcoming the odds. I found the crazy books about people eating diets of only watermelon and heavy cream to be somewhat fascinating, but, you know, crazy.
I was given two copies of a book about a beautiful model who was diagnosed with cancer in her 20s. I read that one because it was easy to read and had a lot of pictures. I absolutely hated it. She talked a lot about wigs, $400 shopping trips to Whole Foods, and did some profiles on powerful women who had cancer and stories to tell. Part of me was super into this (and I drew some inspiration from the women) but included in their profiles was their weight, which corresponded with the girls-just-wanna-have-fun, dumbed down, materialistic tone of the book that I just couldn't get behind.
A friend came over to give me free Reiki sessions. My mom drove me to a strip mall in the west end of town to get acupuncture. I did EMDR for seizure related PTSD and therapy for my anxiety disorder that had somehow not magically improved now that I had a hole in my brain.
I slowly started to get my bearings. I was still panicky but not quite as sensitive. I was regaining sensation and movement in my arm. Progress was incremental, but, well, progress.
I acquired a team of doctors at the hospital down the street so that I could get MRIs locally. I started calling the insurance company myself to dispute bills. I deferred my student loans and wrote approximately three thank you notes - all that I had the emotional energy to write.
I moved back into my apartment at the six month mark (February 2). At that time, I could officially drive again (I didn't have a car, but legally I could) and my doctor wrote a note to my employer allowing me to return to work five hours a week. I went back to work in the office, two to three days a week, two to three hours at a time. Over several weeks, I worked up to ten hours a week, by April, I was there 15-20 hours a week.
My parents picked me up to drive me to my frequent appointments. I cooked meals and saw friends, went on neighborhood walks, and hassled with insurance, but spent most of my days outside of work resting.
I spent my time at work writing copy for the website and doing data entry, easy stuff that could be put down and picked up again without bothering anyone else. My short work days left me feeling drained - I was overjoyed to be back but would crawl in bed as soon as I got home. Migraines affected my ability to sit in front of a computer for hours at a time. Appointments affected my ability to work five full days a week.
Yet within about a year, my work had grown significantly. My few hours a week turned into bigger projects, cleaning up some inconsistencies and redundancies on our website that were stumbling blocks for both customers and employees. At the same time, the little company was expanding rapidly and I wound up in a much bigger role than I had imagined for myself there.
By 2014 I was working 40 hours a week doing work I loved. I had some memory problems, some confusion and headaches, I typed one handed. I felt like it was difficult to focus, to see a problem through until its end, but fortunately for me there was so much going on that very few people were working on a linear problem. There were countless projects starting and stopping all over the place so my addled brain did ok.
My company was extremely flexible and forgiving with me. I had four MRIs and many more doctors’ visits a year. And I’d still get a migraine every so often and be unable to work. The company was understanding - they knew I’d make it up.
That 40 hours a week of work took all my time. I didn’t go out after work, didn’t have hobbies. Even though I felt as if I was working all the time, I was happy. I was learning and hitting my (somewhat imperfect) stride.
I got my first MRI in February that year, my second in June, a third in September, and fourth in December, all according to schedule. Some were at my local hospital, but mom and I made the three hour trip to the big-hospital-with-my-favorite-neuro-oncologist once or twice that year.
In December, he broke the bad news: the MRI showed some changes. The good news was that they (the neuro oncologist and radiologist) couldn't see changes in the MRIs between September and December, but that if one zoomed out to take a 6 month view, changes were apparent.
My tumor was growing, slowly but surely.
He suggested a course of action. Two long term studies on tumors like mine published results in 2012. Neuro oncologists around the world were giddy with excitement over the findings.
These studies (EORTC 26951 and RTOG 9402) both began in the 1990s and followed patients over 20 years. Though they were somewhat different, both looked at oligodendroglioma (anaplastic oligo and mixed oligoastrocytoma) and treated them with a combination of radiation and a heavy hitting trio of chemotherapies - PCV.
The results showed that tumors with the codeletion responded really well to the PCV. Patients went longer without needing further treatment (progression free survival or PFS) and their overall survival (OS) was being measured in years. In fact, an addendum to one of the studies was published in 2019 (the 25th anniversary of the beginning of the trial) and 40% of the patients are still living.
In the brain tumor world, months are meaningful, let alone years. Twenty years was unheard of. The good doctor told me that because I was young and my tumor had that mutation he was optimistic that I would do well.
But I was NOT ok at the moment.
I had been told that radiation was a last resort - one only opted for radiation in emergencies, as a last ditch effort. I mean, the possible short term side effects from radiation include worsening of symptoms, seizures, fatigue, headaches, nausea/vomiting, hearing problems, balance problems, brain swelling, confusion, difficulty thinking. Long term potential side effects include more brain tumors, radiation necrosis - dead brain tissue that appears years later to be surgically removed, and “loss of brain function.”
The prognosis was great, sure, but I was facing some horrible realities again. What would I be sacrificing to get through? Time, money, my brain! Things were finally getting good(ish). I didn't want a huge setback.
Looking back, I can see how much grief went into thinking about treatment. It was a horrible few months.
I struggled with denial. I got a second opinion from my local team. I went to the NIH to meet with doctors there. I had to talk this through with everyone. These saints were more like counselors than doctors at this point. I repeated everything I had heard and read. They agreed that I understood my diagnosis, my treatment options, and the studies.
I still couldn't process. I kept my local neuro oncologist late at the office, until well after 6:00. The small room was packed: three med students were observing the doctor that day, following him from patient to patient. I was the last of the day, I’m sure that they were anxious to go home to their partners or make it out to dinner, but they stood there patiently, wide eyed, listening to me argue with the doctor about radiation. They handed me tissues when I wept in front of them. They were my age.
I liked my brain and did NOT want it radiated. I worried about the outcomes - would I be able to do math? would I be able to swallow? - I already had so much trauma to my brain that the idea of blasting it with radiation was overwhelming. I knew firsthand the severe damage that a miscalculation could cause.
I wanted to wait. I wanted to wait as long as possible, this couldn't be the worst case scenario. He told me that it was my choice. I could wait if I insisted but that as I waited, the tumor would continue to grow, so whenever I finally decided I was ready, they would have to radiate a bigger area, which is inherently riskier. There was also the real possibility that if I waited, the tumor could snowball, not only growing in size but also in momentum. It could become more aggressive.
So after about two months of anger and negotiations, I finally acquiesced. I’d start treatment.