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 feeling panicked. I didn’t answer my phone, avoiding any possibility of an unplanned or unscheduled conversation. Conversations were tiring, lights were dizzying, I couldn’t look at a computer screen for long. 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.
Though I chatted with visitors (scheduled at realistic intervals by my parents), 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 have to acknowledge that I am the luckiest person on the planet. 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 could not have supported myself through daily activities like cooking and laundry.
I certainly couldn’t go grocery shopping, pick up my Keppra from the pharmacy, or get back and forth to my physical and occupational therapy appointments. Forget about figuring out what the fuck a person with a brain tumor is supposed to do next.
Compounding my fortune, I had both health insurance and disability insurance, which meant that I had some income while I was unable to work. I continued to pay my rent across town without worry, though I stayed at my parents’ house. It was here that I could rest, process, and recover.
I have no idea what a person without that emergency financial back up would do in this situation.
The amount of love that people showered on me during these months was staggering. 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.
Few people have these luxuries - the people, the insurance, and the small income - that I had and I know that they are the reason I am doing as well as I am today.
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.
My mom began cold calling hospitals - local, regional, and ones reported to be the best - to announce that her daughter has a brain tumor and ask for an appointment or guidance on what to do next.
I was terrified about what would come next. All I knew about brain tumors was what I learned from TV. Did I have a few months to live? I had learned from the surgeon that it seemed to have been slow growing. A year? Three? What would happen in the meantime?
After nearly a month, the neurosurgeon’s office called me with a diagnosis: oligodendroglioma, stage 2. I also got the information that my tumor has a genetic mutation - a codeletion of the 1P and 19Q chromosomes. This felt very confusing and scary to me - a mutation??! - but it was actually good news. Evidence suggests this mutation makes chemo more impactful.
Now I had a place to start googling. My takeaways: the tumor was rare, mostly impacted men in their 50s, and was benign compared to other tumors, meaning that the average life expectancy from the time of diagnosis was seven years.
Mom scheduled appointments for me at the regional hospital where the tumor was sent for a 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 reeling from the first - but I now know this is common practice.
That hour-long drive was absolutely exhausting 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. He told me that I had three treatment options: surgery, chemo, and radiation. He also reiterated something I had heard my neurosurgeon say weeks before: radiation is an option but it is a last resort. It is inherently dangerous, especially to one’s brain, and it is not something that oncologists will just do again in a few years if they see regrowth. It is very rarely done more than once.
So no (more) surgery, no radiation (yet). He recommended I start taking Temodar - 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.*
*This is a theme. When you have a new diagnosis you believe everything the doctors tell you. You are extremely vulnerable and sensitive to everything the doctors say.
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.*
*Now this was a tremendous relief considering the don’t-let-the-door-hit-you-on-your-way-out treatment from the first hospital. I hadn’t forgotten that as soon as they wheeled me to the car, they seemed to wipe their hands of me - there was no one to talk to, no one to answer questions.
I sobbed on the way home. I was completely drained of energy and it was imperative that I start treatment ASAP. My mom was chattering about getting another opinion. I begged her not to make me. I told her that we were already behind. My window was closing.
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 deal breaker: we were going for another 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 at the great hospital agreed that it was the best plan of action, I was ready. I had my teeth cleaned and ordered the script.
Just like at the regional hospital, I had to see a neurosurgeon before I saw the neuro oncologist. My newest surgeon (my friend’s mentor) was wonderful. He agreed that my surgery was good, no need to do that again. Truly a relief.
I then met the neuro oncologist (my dream doctor) who had a different opinion than the previous one. He suggested that we take a wait-and-see approach because the tumor seemed so 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.
In fact, Dr. Dream explained the lack of research on my type of tumor and how the first ever long term study on it was about to conclude. Those results might impact my course of treatment and there wasn’t any information to know whether taking Temodar now could impact the effectiveness of treatment later (participants in this study only did one assigned treatment as that is how studies, you know, work).
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.
I left Dr. Dream with a plan:
I would continue to work on healing before introducing new trauma to my body. I would rest and go to occupational therapy to work on my arm. 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 mega doses of vitamin D if I wanted to try alternative therapies.
I would get a team at my local university hospital, where I could get MRIs four times a year without a 6 hour round trip train ride. I would occasionally visit Dr. Dream for one of those MRIs. I liked him and trusted him and wanted to continue to be his patient.
Thus began another waiting period. I had a diagnosis and a plan, but I was still a mess - dizzy, weak, unable to drive. I continued to stay at my parents' house until February - exactly six months post seizures.
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 Suleika Jaouad, 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. 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 outdoor-Barbie-tone of the book that made me hate it.
Autumn, a lovely 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 that 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.
At that time I moved back into my apartment, 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 appointments. I cooked meals and saw friends, went on neighborhood walks, and hassled with insurance, but spent most of my days 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 days a week.
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. I’d 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. I saw friends and family for meals and walks, but for the most part I remember feeling very tired.
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.
In December, Dr. Dream 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 if they zoomed out to take a 6 month view, changes were apparent.
My tumor was growing, slowly but surely.
Dr. Dream said the study he had mentioned two years earlier was concluding. The results had not been published yet, but were circulating among neuro oncologists around the world.
The study showed that 75% of participants with tumors like mine who had the course of treatment he was about to recommend, were alive (and had no other treatments!) 20 years later. 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.
His recommendation was radiation and a few courses of powerful chemotherapy. Remember, I had been told that radiation was a last resort - one only opted for radiation in emergencies, as a last ditch effort.
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 difficulty I had processing that my tumor was growing and I really 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. This treatment was presented as an option, no one could force me to do it. I could wait, I could do nothing, I could take Temodar or do chemo without radiation… All my doctors were more like counselors at this point. I repeated everything I had heard and read. These saints agreed that I understood my diagnosis, my treatment options, and the study Dr. Dream had been referencing.
I bargained. I kept my local neuro oncologist (who looked like a Disney prince) and his poor team of students late at the office, until well after 6:00. I cried a lot. They were calm and encouraging, reminding me about how good I had it and how far technology had come. I was angry though.
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 desperately wanted to wait. I wanted to wait as long as possible, this couldn't be the worst case scenario. I argued, asking every question imaginable and posing impossible hypotheticals. They were patient and I finally relented when I got them to admit that they would not want this treatment and would want to postpone it as long as possible if our roles were reversed.
The Disney Prince told me that I could wait if I insisted but that as I waited, the tumor would continue to grow. And that when I finally decided I was ready, they would have to radiate a bigger area, which is inherently riskier. He reminded me that if it continued to grow, it could become more aggressive, which is inherently more dangerous.
So after about two months of anger and negotiations, I finally acquiesced. I’d start treatment.