A little more than one month ago, May 22nd, was my one-year anniversary since my brain surgery in 2018. It was the day I laid on the operating table, awake, as surgeons mapped out my brain’s motor function and removed a section of my tumor.
Since I was twelve years old, I’ve had several of these “anniversaries:”
- November 25th, 2003: The day of my first seizure and the day I was diagnosed with a brain tumor.
- February 2nd, 2004: The day of my first surgery and the day I started my treatment journey.
- November 19th, 2014: The day I was diagnosed with my first recurrence.
- February 10th, 2015: My first day of proton radiation and chemotherapy.
- March 10th, 2018: The day I was diagnosed with my second recurrence.
…as you know, the dates have continued over this past year.
These days have meaning to me: They are moments in time for me to take a step back from the nonstop treadmill of life and reflect on how far I have come. These are days I celebrate, even if it may seem strange to the outside observer. On these anniversaries, I deserve to give myself that extra special ice cream Sunday or delicious chocolate dessert because against the odds I have continued to move forward.
The one-year anniversary of my surgery last month felt different though. It didn’t feel like a day to celebrate because for the first time in my medical journey, I felt I had taken several steps backward.
If you read my last post, Sick of Being Sick, you know that the month of March was extremely difficult. Yet despite those obstacles, I traveled back to Boston for an amazing weekend with my family and partner to give the keynote speech at Dana Farber’s Young Adult Conference (I’ll share the video soon).
I thought the weekend away would be the turning point when I would start to feel better, but just after returning to the Bay Area, I woke up with excruciating pain going down my entire left leg. An eleven out of ten, shooting, stabbing, tearing, ever-present pain that was often worse than anything I’ve experienced after my two brain surgeries. An MRI revealed that I had a L5 (lower back) herniated spinal disc compressing my nerve, ultimately causing sciatica down my left leg.
What were the chances? Despite the current stability of my tumor, I now had to deal with something completely unrelated to my cancer treatments. The pain prevented me from doing the activities I enjoyed, it distracted me from writing, and all I could do each day was lay down on my bed or the couch. I was trapped inside, staring outside at the green leaves of the trees rustling in the wind.
Despite the pain, I wanted to attend the National Brain Tumor Society’s annual lobbying event at the Capital in Washington D.C.. I knew the flight would be incredibly painful, but I wasn’t sure how many chances I would have to advocate for the brain tumor community. I needed to share my story so others may have better treatments in the future.
Luckily, I was able to combine this trip with seeing my partner who lives in D.C., but on the day of the event, I woke up shaking, dizzy, with a 103-degree fever. Concerned it may be related to my treatments, I went to the emergency department at Georgetown Hospital and was diagnosed with the beginning stages of pneumonia induced sepsis.
I spent three days in the hospital receiving IV antibiotics and fluids until my Mom, step-father, and I made a jail-break to get back to Boston where I could slowly rebuild my strength. After a little over a week slurping down gallons of chicken soup with matza balls (the ultimate Jewish remedy), I returned to the Bay for my last two weeks of the semester.
Back in San Francisco, my doctors attempted a nerve block on my spine to reduce the pain, but it didn’t work. While over time the pain slightly improved, it was still debilitating and ever-present.
A week later, May 22nd, the one-year anniversary of my brain surgery, happened to be my 11th immunotherapy infusion. I planned to record a video from the infusion chair to reflect on the physical and emotional whirlwind of the past year. I wanted to explore why I felt so different on this anniversary compared to past dates.
I didn’t get the chance. An hour before my infusion, I started having severe stomach pain and nausea. At the infusion center I asked for some nausea medication. While I waited, I suddenly felt dizzy. I’ve experienced this dizziness quite often since March, usually in the middle of the night when needing to go to the bathroom. In fact, I had one near-fainting episode in a cafe where I caused quite a commotion since someone called 911.
This time was different though. I sat down in a chair, and immediately blacked out. For thirty seconds I lost consciousness. When I woke up a crowd of nurses and a doctor were surrounding me, putting oxygen on, taking my vitals, talking to one another, and asking me questions when they saw my eyes open.
Fortunately, I was already in the hospital, so they were easily able to bring me across the street to UCSF’s emergency department. (…well in all honestly the trip over wasn’t the smoothest. If you didn’t know it’s quite difficult to navigate a wheelchair and an oxygen tank in unison. The nurses did a great job though!).
After half a day in the ED, they attributed the syncope (fainting) episode to pain; the pain due to gastritis; and the gastritis due to naproxen (Aleve) I took for the pain in my leg/back. It was a series of medical dominoes.
When I reflect on this past year it is easy to see myself taking multiple steps backwards. Despite a growing brain tumor, one year ago I felt amazing: I was at a healthy weight of 148lbs, doing cross-fit once a week, hiking almost every other weekend, and excelling in medical school. Now, I am 128lbs, barely able to withstand basic physical therapy, unable to do any significant outdoor activity I enjoy, and putting medical school on hold while I try to finish my master’s on a part-time schedule. After one year, these are not milestones I want to celebrate.
Back in January of 2015, I shared a quote from Stuart Scott’s inspirational ESPYS Speech: “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”
At that time, the premise of his quote seemed simple and a compass for me to navigate my journey with brain cancer. Regardless of the time I have on this earth, I want to live my life with as little regrets as possible.
I recently watched the movie, Five Feet Apart directed by Justin Baldoni, who I happened to meet as an EndWell ePatient Ambassador in December last year. In the film, Stella, the main character with Cystic Fibrosis says something poignant that I think every person with serious illness can relate to: “This whole time, I’ve been living for my treatments, instead of doing my treatments so that I can live.”
Especially in the past four months, my physical condition has prevented me from living how I want to live. All I could do was try to withstand the consecutive blows. Try to get better after each setback. Try to figure out the causes of these issues so that they wouldn’t happen again.
It was and still is all-consuming. A full-time job. Often feeling like I’m existing rather than living. With each setback I am being pushed underwater, unable to catch my breath before the next blow drags me under. In this unstable state, making it to my treatment in the third week of my cycle…making it to my MRI every ninth week feels like the best I can do right now.
It feels like I am just barely staying afloat.
But I don’t want my life to be “living for my treatments.” That’s not how I wish to live, why I wish to live, and the manner in which I wish to live.
So, when May 22nd came around, one year since treatment started, I didn’t want to celebrate because all I saw was regression.
Upon reflection though, I’ve realized perhaps my lens was too narrow. To focus only on how I am doing medically, given the reality of my condition, may not be the best way to measure my progress when I approach my “anniversaries.” When I broaden my scope, I can see I have taken a lot of steps forward in many other aspects of my life.
Throughout my challenges this past year, I have faced my mortality more acutely than ever before. In doing this, I have come to know my true self, and what I value most. This is a rare gift I now have to help me make decisions for my life.
In one month, I will celebrate a new anniversary date: One year since I met my partner, Michael. Despite everything that has happened this past year, I met the man I love.
Love changes my perspective on all the medical anniversaries. Every day is to be celebrated because it is another day for me to give and receive love.
I continue to have back and leg pain (…although it gets better day by day), I am wearing a heart monitor to try to figure out why I am having frequent pre-syncopal (…almost-fainting) events, and I just got my 12th infusion this past week that knocked the energy out of me.
But…my most recent MRI came back stable. I may be fatigued, in pain, or often generally out-of-commission, but it’s worth pressing forward so that I can embrace the moments when I can truly live. So that I can love.
June 8th, my sister’s wedding, epitomized all that is good in my life. Regardless of all the obstacles I may face, I have family, friends, and Michael to dance with and celebrate life.
In the grand scheme of it all, what more can I ask for?