What I learnt from having a brain tumor

commemorating the last day living with this naughty little thing

I have a lesion on my pituitary gland that we think is a tumor, and I am getting it surgically removed on Monday. This tumor has subtly shaped aspects of my life in the past 4-5 years and possibly will continue to shape my life in the upcoming years. So it feels like I should write something to commemorate the last day that I’ll live with it.

p.s. I will be completely fine after this surgery since pituitary tumors are rarely malignant, don’t worry!

Health is no big deal until it’s the only thing that matters

It’s cliché because it’s real.

I started feeling really exhausted this March to the point that I took 4 days off from work, slept for most of those days, and barely recovered. Since senior year of college, which was 3 years ago, I’ve always needed 9 hours of sleep to feel fully rested. But even 9 hours no longer feels enough to recharge me to get through a workday. By the end of the day, I would sometimes feel so tired that a 30-minute drive home feels unmanageable.

I did a normal blood panel, hoping to find something, but everything turned out fine. My PCP thought it might have to do with new allergies or vision problems, but attempts to address these causes didn’t help. I thought I was burnt out, or these are parts of the growing pains of getting older — wouldn’t it make sense for me to be exhausted if I work 9-10 hours each day and do another hour of driving on top of it? To help myself feel better, I started resistance training 4 days a week, HIIT 2 days a week, and decreased sugar intake. May rolled around, and I felt much better, but something was still off. I had to drop figure skating, helping to produce a musical, and hosting a paper reading series because I simply couldn’t find the energy to do the things that I used to feel so excited by. I pared my life down to pretty much just work, exercise, my relationship, and a handful of friends, and I was still tired all the time.

I did a DEXA scan in June to track my muscle gains and fat losses from the conditioning. Surprisingly, I have a very low bone density despite having good calcium and vitamin levels. I thought it had to do with my irregular periods - I haven’t had a period since the beginning of the year. Since Covid, I have never had regular menstruation - my OBGYN and various PCPs over the years attributed it to stress, mental health, and “regularity” meaning different things for different people. Birth control could fix it, I was told.

I was a frog in boiling water, not realizing that missing 6 periods in a row is actually a big deal, until my partner connected the dots: wacky hormone levels can explain all of exhaustion, low bone density, and amenorrhea.

Boom, we found my prolactin (a hormone that balances estrogen) levels to be 11x the high end of the normal range. This means something is very wrong with me, despite my regular biometrics looking fine. The reasonable next step was a brain MRI, which checks for prolactin-secreting tumors or something on my pituitary gland, which controls prolactin secretion.

By the time July rolls around, I am not only physically exhausted but also mentally exhausted from my physical incapabilities. I would have good days, during which I do a lot of work and see friends, but also very many bad days, where I can’t even sit through one evening hanging out with friends without feeling too tired. Half of my vacation days in Hawaii were spent trying to get myself to feel better so that I could fully enjoy the moment. On top of that, I was too tired to plan anything for my birthday or to get a cake for myself — picking my birthday cake used to be my favorite thing to do each year. Sometimes, it feels like I have to try so hard to stay functional day after day.

The worst of it all is when you know something is wrong with your body, but you don’t know what it is, how bad it is, or how to fix it. The days between doing an MRI and finding out the result, to meeting with the neurosurgeon, were the scariest. In hindsight, it felt silly to worry about having something not curable. But the mind inevitably wonders when you’re shoved into a narrow, loud MRI machine on a thin tray, being wrapped in blankets and told to stay still without falling asleep — What if there’s not just one tumor but many? What if I have to live with some limiting consequences for the rest of my life?

For a moment, everything melted away, and I just hoped that no matter what it was, I didn’t need to spend much time in this depressing, morbid cancer fcenter.

My hero and the love of my life

Finding the love of your life early is so underrated, especially in situations like this.

If Andrew didn’t know me and my body on a different level than anyone else, and is extremely invested in my wellbeing and our joint future, he would’ve possibly not played offense to tell me to do a Dexa scan and eventually connected all the dots. He saved me from months of exhaustion, potential infertility issues as a consequence of prolonged amenorrhea, and vision impairment if the tumor continued to grow by 20%. He also shielded a lot of medical anxiety for me by doing a ton of research behind my back and priming me for what to expect at each step without worrying me. Only after we’re sure of my diagnosis did I realize how stressed he was ever since we found out my astronomically high prolactin levels.

One of us tries to stay positive at all times, but there was a time, post the first MRI, before we found out the results, when we were both scared. We were holding hands, sitting outside a restaurant in the mid-afternoon sunlight. Quietly and gently, he told me that he’ll love me and be with me for the rest of my life, even if we find something bad. If we have less time than we think, he’d take me to City Hall right away, because it would be unbearable to not be married to me for the rest of our time together.

Now we know that all it takes is a surgery to get rid of this most likely benign tumor, it’s silly looking back at that moment when we entertained thinking about having limited time together. But it just means that it’s all the more wonderful to love and be loved so deeply, for so much longer.

I am not scared of the surgery tomorrow, not only because some of the best surgeons are taking care of me, but also because I know he’ll be there before, during, and after. Even if I will probably have lots of tubes in me and be weak and in pain when I wake up, he’ll be right there. That’s enough to look forward to. I know that having him on my team, I can get through anything.

Nobody wants a brain tumor, but there’s so much to be grateful for

Many of my friends know that I’ve been writing daily appreciations since the beginning of 2024. One of the main perks of this exercise is that it rewires your brain to find something wonderful out of every situation.

For starters, this is probably the best kind of brain tumor to have :) Despite my tumor being on the bigger side and my prolactin level being much, much higher than other patients with similar lesions, the symptoms I experienced were not crippling. The surgery is only 3 hours, and within a few weeks of recovery, I can go back to 100%. Being in SF means super easy access to UCSF, which has one of the best neurosurgery departments in the country. I am also grateful for UCSF’s speedy scheduling (at least for my kind of cases) - I was expecting it to take months before I could get an appointment and then another month before I could schedule my surgery, but it only took less than 4 weeks between getting referred to getting on the operating table. I am also grateful for having a low out-of-pocket max insurance, since this procedure, plus many MRIs before and after, without insurance would have totally bankrupted me. I am grateful to have unlimited sick leave at work, which allows me to take my time to recover. I am also grateful to have friends who offered to help with various things - even though I probably don’t need the help, I know I could actually lean on them if I needed it.

Being extremely tired for the past few months helped me to see how lovely it is to be young and full of energy. I used to be able to do so much outside of work, and I very much look forward to that post-surgery. Yesterday, I was driving through the streets of SF, sipping an iced latte from a straw on my way to a pilates class. Starting tomorrow, I won’t be allowed to drive for a bit, can’t do pilates or most exercises until I’m cleared, and won’t be able to use a straw for fear of creating pressure in the head. There are so many small things, including our energy levels, which we take for granted until they are gone. (I really will miss straws for the next few weeks…)

Seeing all the things I accomplished in a new light

This tumor has been growing in my head for possibly a handful of years. This is plausibly why I never had normal periods and needed long hours of sleep. My very sweet housemate Megha wrote me a card, which reminded me that even though I’ve gotten used to this impairment over time, I accomplished so much with it.

In the past four months, when I had the worst symptoms, I finished the first research project I co-led, which has been a goal of mine ever since I set out to try research. Before that, I was involved with two other papers - my first two publications ever. I deepened more than a handful of friendships, brought a lot of momentum to the production of Silicon Valley: the Musical, and co-organized a series of paper reading events.

Being a self-critical one, I attributed my tiredness to a variety of things - from being lazy, to wondering whether it’s because I somehow secretly hated my job, to “just physically weak.” The reality is that I have been playing on “hard mode” this whole time. Without good discipline and lots of willpower, I probably would’ve been a lot more consumed by my illness. I somehow got myself to wake up all these mornings to exercise when I am extremely tired. Two hours ago, my energy went down the cliff after a great hangout with a friend, but I still sat down to finish this post.

I am excited to play on “easy mode” soon, and to celebrate health, my beautiful relationship, youth, and every small and beautiful thing I have in this wonderful life.