Organized by: Neha Mantri
In Simmi's Words
The Diagnosis: March 2015
When I started to get headaches after work or in the mornings, I didn’t think too much about them. I figured I was just tired from long grueling days in the hospital running around as a young newbie doctor, in my first year of residency. The headaches continued for about 2 months, I would self medicate with Tylenol PM to sleep at night and load up on Motrin or Tylenol before heading into work at 6am every morning. But, nothing seemed to be helping my headaches. The week I was diagnosed, I started to get numbness and tingling in my left arm and hand along with occasional dizziness and fatigue throughout the day, and even started to nap and find places to hide in the hospital to take 20- 30 min breaks and shut my eyes. Again, I attributed these new symptoms to my work life and long stressful shifts in the hospital. Could the numbness in the arm and hand be something like carpal tunnel, from using computers? Maybe. Could the fatigue be from working 12+ hours a day for 6 days a week? Maybe. I started having trouble sleeping through the night; I would wake up with excruciating and dizzying head and neck pains. Again, I thought maybe this was from being stressed before bed and just “sleeping wrong.” One Monday evening I came home and decided to unwind with some TV and my favorite show, The Bachelor. I texted my roomies and let them know I was going to have wine, cheese, chocolate and snacks ready for The Bachelor season finale, the next 3 hours we laughed, joked and enjoyed the show. This was the last evening I spent at home in Sacramento.
On March 15th, I woke up at 2am with a stiff neck and the worst headache of my life. I got up out of bed and tried to walk over to my dresser to get some Tylenol, but I didn’t make it. I fell onto the floor because I was so dizzy. At that moment, I thought, “Oh no! I need to call my chief resident to get tomorrow off from work.” I called my chief resident and she told me to go into the ER. I tried walking down to my car to drive over to the ER, but again I stumbled and fell. At this point, I tried to climb into bed and “sleep it off.” I woke up a few hours later and finally made it down to my car. I drove across the street to the hospital and was immediately seen by a doctor. He told me my symptoms sounded concerning for increased pressure in my head and around my brain. I was rushed over to the CT scanner. 30 minutes later, I got the worst news of my life. The doctor comes into my room and sits down next to me. I knew, it was bad. Why else would he sit down? He asked me if i wanted to see the scan. Of course, I said, yes. He pulled up the scan on the screen and I started to cry uncontrollably. My brain looked like mush and there was a huge mass on the right side that was pushing my brain up against to the left side of my skull! I didn’t know what the mass was but it couldn’t be good! At that instant, i started to pray that it was a huge fungus ball or TB or a parasite in my brain. I wanted that mush and mass to be anything but cancer!
I had my surgery onMarch 21st and then the next thing I remember is waking up and realizing I wasn’t able to get myself out of bed and...it was April 4th. The previous two weeks were a valium filled haze and I don’t remember any of it. I rely on my on my boyfriend and family to fill me in on everything that happened post-surgery.
For days, I repeatedly asked my mom to just let me get up and go to the bathroom. I kept telling stories of when I was able to walk.
With a heavy heart she had to remind me again and again, I wasn’t able to walk.
I was lucky to be enrolled in the in-patient physical therapy and rehab program where I would learn how to sit, stand, and move from chair to chair. Every morning the nurses would put up a schedule in my room starting at 8:30 am. The occupation therapist would wake me up and help me out to the bathroom and teach me how to brush my teeth, wash my face, and use the toilet again. The next few hours of my day would be filled with physical therapy down in the basement. Everyday my mom would accompany me, and even take videos of me like a mother would of a baby taking their first steps. As each day passed, it actually became more difficult for me to accept my disabilities.
I remember the worst day in the hospital was when the therapist put a mirror up in front of me. I saw everything that was happening and I wasn’t able to sit up straight, stand or take a step forward without falling over. I looked at myself in the mirror and felt I was unrecognizable. That day the physical therapy session was cut short: I was so emotionally distraught that all I wanted to do was to be wheeled back to my room and cry in bed.
The next few weeks I continued to struggle with accepting my disabilities. Every morning the doctors would come and ask me to raise my left hand and wiggle my left toes. And every morning I was unable to do so. Not only was I not able to move, I couldn’t even feel them touching me.
As the days went by, I started to look forward going to physical therapy. I felt like my physical rehabilitation was under my control, the harder I worked, the better i would get. Within 3 weeks after surgery, I started to stand on my own and used a modified walker to take a few steps at a time. I still remember how excited I was when they presented me the walker, this was my first step in learning to walk again. By this time, my family and I along with a team a doctors had decided to enroll in a clinical trial held at Stanford to treat my brain cancer.
I would wake up in the mornings, eagerly awaiting my discharge date. Finally being able to go home to the bay area and start my treatment.
The Treatment and Rehab: April- June 2016
When I was finally sent home from the hospital, I was greeted with tons of love from my family. The transition to living at home was a difficult one. My new reality involved: stumbling around with a walker, not being able to shower alone, and needing my mother’s assistance with even the simplest tasks. I wasn’t able to cook for myself and things like getting dressed, combing my hair, and standing up to brush my teeth were nearly impossible without the help. Now that I was back home, my days were filled with hospital visits and teaching sessions on chemotherapy. They told me that the chemotherapy and radiation would zap the energy out of me. Even though I was nervous--I was more excited. This was going to be the start of the next chapter in my cancer story.
The next six weeks were difficult, annoying, and scary. My days were filled with frustration with all that I was not able to do. I felt like I lost my independence in the matter of months. I was eager to start working on improving my disabilities. However, due to health insurance issues my physical therapy sessions were being delayed. It seemed like there was one hurdle after another in finding a facility that would work with me and help me gain my independence.
I did what I could at home with the help of my friends and family. I would limit the amount of time I spent in my wheelchair and do as much as I could on my feet--even if it was just standing. My family would keep me motivated and take me to the backyard, turn up the Rocky soundtrack, and push me to do laps with my walker in the backyard and around the neighborhood. Each day I could feel myself getting stronger, but still struggling to see the kind of progress I wanted.
In terms of working on my left arm and hand, my family would ask me to give them high fives, fist bumps, and anything that would involve my left hand. Even though these exercises were fun, I started to feel like there was so much more I could be doing, but I needed the guidance from a professional. By this point, I had been home for a month and a half, I couldn’t move my arm very much and my left hand was essentially useless. Finally, at the end of May after weeks of waiting and dealing with insurance authorizations I started occupation and physical therapy at Santa Clara Valley Medical. The first few sessions were much more frustrating and emotionally draining than I ever would have expected. With each task that I was unable to perform, it was a reminder of how far I had to go and how hard I needed to work to overcome my disabilities. At the same time I was going through intensive chemotherapy and radiation treatments every single day of the week. As my treatments began to add up, I felt more and more fatigued and found it difficult to find the energy to do anything but lay in bed. When my clinical trial started I had a PICC line placed in my right arm, which included a big 5 pound pump with chemo running 24/7 for 4 weeks.
Some days I found myself wishing I could sleep all day because my reality was so depressing that I wanted to live in my dreams where cancer didn’t exist, I was a young doctor, living on my own, and my future was bright.
Now that my clinical trial has ended, I take chemotherapy pills for 5 days out of the month. These 5 days I’m knocked off my feet but I try to build my strength by doing squats, using my stationary bike and going to swim lessons. Even when I try my hardest to stay optimistic and motivated I find myself having days when I’m so terrified of the future and my next surveillance MRI that I become inconsolable. I know the statistics of my brain cancer- high grade glioblastoma multiforme is a beast. The tumor is described as a tree with roots that extend deep beyond the surface tissue. Even though my tumor has been surgically removed, those devilish roots can grow at any time. There is no cure and I will be taking chemo for 12 months and getting repeat MRIs every 2 months.
For now, I want to live in the moment, do as much as I can with my loved ones, pray and put all my efforts towards regaining my independence and any semblance of a normal life. I currently live at home with my mom and brother; I had to leave my second home in Sacramento, Ca and UC Davis Medical Center. I do not know when I’ll be able to return to my life as a young doctor helping others in need, but I see a glimmer of hope when I think of my future in patient care and the world of medicine.