One of the most difficult aspects of dealing with this experience is waiting. It has been about a month now since I found out about the tumor, and I still do not know what the next steps will be. We are still waiting on the results of my functional MRI to determine if surgery is possible, as well as the molecular tests to see what type of treatments can be used. The scariest part of this waiting is the unknown. How long will this go on for? A year, 6 months? What state will I be in after all of this? Will I be able to move my right side? Is this going to be a lifelong struggle or a temporary obstacle? These are just some of the thousands of thoughts that spiral through my head on a daily basis. What I’ve learned though from my past experience with cancer is that speculating about the unknown is not only unproductive, but can be detrimental to one’s health. However, it is much easier said than done to stop your mind from spinning, but over the past month there have been various moments and methods that have helped me try to stay focused on the present.
My first week home after finding out about the cancer, I was depressed. All I wanted to do was lay on the couch and watch movies. I even started playing video games again (…something I hadn’t done in a long time). For me, these virtual realities served as an escape from my own reality. I thought I would be better off escaping from what was going on until we had information to fill this gap of unknowns. However, sitting around all day became very boring. Once the allure of the virtual reality faded away, actual reality began to creep back in. That is when my mind would start spinning, questioning, and getting worried about what will happen in the future. This would in turn fuel feelings of helplessness and depression. In my writings about being a survivor, I have often spoken about how important it was to not let this sense of unknown take over, but to live fully in the present. During this first week I had lost that feeling. I would try every now and then to walk my talk (…so to speak), but found it to be extremely difficult.
There was a specific moment though that helped me reach back into myself and break this cycle of depression. One of my friends from my time living in Madagascar posted a link to her cousin Nathan’s blog. Nathan was recently diagnosed with an inoperable brain tumor. Reading his posts about his experience and the positivity he maintains inspired me. He reminded me of my philosophy to live life to the fullest. He also reminded me of my privilege to have a range of treatment options available, so that when the time comes to fight this tumor, I am going to fight it as hard as I can. I also started thinking about how I would feel a few months later looking back on myself now, and how disappointed I would be to see myself letting time slip by.
I felt a boost of energy to make the most of my time, but I still felt terrible physically. My neurologist told me to keep a log of my symptoms, and being a science major, I turned it into a meticulous spreadsheet. It felt like I was adding a row every few hours. Headaches, visual auras, ear ringing, pain in my hand, tingling in my foot, and strange feelings throughout my right arm. During this time I also had two seizures. These physical symptoms were making my emotional symptoms worse, and vice versa. The physical and emotional states of being are intrinsically linked. My constant stream of thoughts made it difficult to fall asleep, leading to fatigue throughout the day. This fatigue amplified my symptoms even more.
I made an appointment to see my neurologist and discuss the symptoms I had been having. We had a long discussion in which we both agreed that focusing on my emotional health was just as important as my physical health. I would often discount my emotional stress because mental health can in many ways feel intangible. My doctor and I decided to focus on getting me back to a normal sleep schedule. I had already been on 1000mg of Keppra morning and night for the seizures, but we also added 0.25mg of klonopin twice daily to help with the anxiety.
Since making that change two weeks ago, I have started to get back to a normal sleep schedule. Physically, I am now feeling the best I’ve felt in two months. While I still get some headaches, auras, and sensory seizures, I feel full of energy. Despite this, there are still times where I find myself stuck in a bought of depression, fear, and helplessness. What has been the most helpful “cure”, but also the hardest to accept, has been opening up to support and making myself vulnerable. I will talk about that further in my next post, but for now I want to thank everyone again for the amazing support as I wait to find out where this journey will take me.