I am currently two weeks through treatment, and besides some stomach issues and fatigue, I’m actually feeling pretty well. While I undergo proton therapy, I am living in an apartment in Cambridge in the same building where my dad is, making it really easy to get to my treatments every day. It has been nice to have a routine (…even if that routine is made up of continuous treatments and appointments). Living in the city has also offered me a bit of independence as well as opportunities to see my friends more often. While the side-effects of treatment will increase over the coming weeks, everything has been going pretty well. Throughout this experience it is truly a blessing to have consecutive days feeling good about the situation…because the journey can be an emotional rollercoaster where some days or weeks, you just feel like crap…physically and in particular emotionally.
A little over a week ago, I had a good friend, who is also going through her own journey with cancer, come visit me in Boston. During one of our many multiple hour-long conversations, we started talking about the negative emotions that emerge with cancer, and how hard it can be to quell those emotions. My therapist who specializes in young adult cancer at Dana Farber, suggested that I try to externalize these raw emotions. In an attempt to follow my therapist’s advice, my friend and I finally came up with an externalized version of my emotional state…a chocolate kingdom (…because everyone knows that I am obsessed with chocolate!). On a good day, all is well in this hypothesized chocolate kingdom, but sometimes when these negative emotions emerge, part of the kingdom starts to melt. Usually, I have the ability to quickly address those emotions and stop the melting; however, during the two weeks before my treatment, the chocolate was melting faster than I could fix it. The following post is about those two weeks and the larger emotional struggle involved with having cancer.
This post was written the weekend before starting treatment on Friday, February 6th:
The past two weeks have been difficult since finding out about my treatment plan. I have been busy with a lot of preparation appointments for the proton therapy and chemo that will begin this Monday. These past two weeks have probably been the most difficult time since finding out about my recurrence. Originally, my time was consumed with tests and consults, reading articles, and thinking about my potential treatment options. My mind was constantly at work or distracted, but now that everything has been decided and the analytical planning period is over, I am left having to ride the wave of the next 6 weeks of proton therapy and a year of chemo. I am left facing all of the emotions that have been boiling up over the past two months, but I have been too busy to feel…until now.
One of the most difficult challenges I have had to face is my loss of independence. For the past year and a half, I have been living on my own on the other side of the world. I had a house, a job, and the ability to do things when I wanted to do them. I came back to Boston for what was supposed to be a month vacation that has now become at least a year-long stay. I went from complete independence to full dependence on those around me. I have been living at home, no job, and no way to get myself around places. Due to my seizures I am unable to drive, so I have to rely on others to travel. There are so many people in my camp who have offered to give me rides, or come out to where I am, which I am incredibly grateful for. It isn’t the difficulty to go somewhere that is hard, but the inability to go do something when I want to go do it.
For the past two months I have been living out in Concord at my mom’s place. It is the first time I have lived at home for an extended period of time since leaving for college. Concord is a beautiful place, my mom’s cooking is amazing, and in all respects, I have everything I would need. The loss of independence though, amplified by the inability to get myself around, has brought feelings of isolation. Isolation is defined as the state of being placed apart, detached, or separated from others. According to this definition, I was not actually isolated because I have been truly blessed to have the support of my family and friends throughout this entire process. So why did I feel isolated? Yes, I couldn’t get myself around places and was sometimes stuck in Concord, but with one phone call I had a support network willing to get me wherever I wanted to go. Thus, I think the isolation didn’t necessarily stem from the circumstance, but was rather perpetuated by my own actions…or inaction.
I wrote in previous blog posts about feeling guilty and burdensome. I’ve written how these are natural feelings, but can’t be dwelled upon both for my own health and the sake of those around me. Over the past two weeks though, I had lost that understanding. It is this disconnect…between what I know I should be feeling to cope with my experience, and what I am feeling that has caused the greatest pain. Most people know that I usually can keep my emotions in check (…except for my “sensitive” tear ducts…a.k.a. crying). I am a very analytical person, and thus I process a lot of things internally before I react. This ability has helped me a lot throughout life, but over the past two weeks, it has been my curse. Now that things are starting to settle down, all of the raw emotions I had been storing away over the past two months have been slowly surfacing like a monster climbing out of a deep abyss.
Where do these emotions come from? I think fear…Not fear of my treatment, but fear that I am/will not do enough to give myself the greatest shot at a good outcome. The physical aspects of cancer are out of my control. The treatment plan is set, the radiation and chemo will make me feel sick at times, and will have an unknown impact on my tumor. What I can control is how I react to these uncontrollable situations. What I can control are the aspects of my life (i.e. eating, exercise, emotional well-being) that are intertwined with my physical outcomes. I want to give myself the most amount of time I can get before another recurrence. Over the past two weeks, I have been scared when I am unable to manage the controllable factors of living with cancer. This fear has translated into strong emotions of irritability, leading to increased isolation, which in turn perpetuates my irritability…An endless downwards cycle (…or a perpetually melting chocolate kingdom).
It is often the smallest things that have set off my emotions, like missing an appointment or being late because of the weather. Beyond that, I have continued to have seizures, headaches, and significant fatigue. The seizures are literally a period of being out of control, but don’t affect me too much emotionally because I understand they are merely a symptom of my tumor. The headaches and fatigue on the other hand create a more difficult situation. These physical symptoms increase my feelings of irritability, which in turn amplify the headaches and fatigue. With brain cancer it is often difficult to discern whether or not the physical symptoms I am feeling are due to the tumor, emotions, or both. There is no fine line between physical and emotional health with brain cancer…it is a blurred continuum.
When these raw emotions surface (i.e. irritability, fear, etc.), I internally recognize them. I understand that they are natural feelings, but unproductive to making me better. I understand that these feelings stem from a fear of uncertainty and a lack of control. I understand that there is no point to let that uncertainty overcome my life, but to focus on the present and live every moment to the fullest. I understand all of these things, even at the same moment I am feeling these raw negative emotions. This recognition of what I should be feeling are in reality the coping mechanisms I have developed throughout my life dealing with cancer. Despite that, over the past two weeks, I have been unable to calm these raw emotions (…I have been unable to stop the chocolate from melting). My inability to control these emotions despite my analytical understanding of the entire situation makes me frustrated with myself, so I shutdown.
Over the past two weeks this has usually occurred while I have been with my mom or her partner, Mark. While not intentional, my process of shutting down ends up hurting those around me. I have explained to my mom several times that my frustration stems from the circumstance I am in, and is never personally directed at her, but that does not take away the sadness and hurt a mother feels for her son. I recognize that my actions have been creating that hurt, which makes me even more frustrated with myself. It increases my feelings of guilt, and that my situation has brought this significant burden back on my family. This in turn has further perpetuated these raw emotions that I have been unable to control, and the endless cycle of fear, isolation, irritability, and hurt has continued and built up over these past two weeks, creating further disconnect between myself and those I care about. My effort to protect others from my pain was creating more suffering for myself and for those around me.
On the night I was writing this post, I was going to end my thoughts by saying that I did not know how I was going to overcome this emotional challenge, except for hoping that time will be the answer. However, while eating dinner, Mark finally pushed me to open up about everything…so I laid it all out there…everything that I have written above, and then some. Over the past two weeks, I feared that doing this would make everything worse because I thought that all of my emotions had been triggered by my lack of independence, stemming from my current living situation. I did not want my Mom and Mark to blame themselves for these feelings just because that is where they happened to be living at the moment. But I was wrong. These emotions were not stemming from a lack of independence, but rather from feeling like I couldn’t talk about the struggle between what I am feeling and what I know I should be feeling to cope with my situation. For someone who normally has a grasp on my emotions, I felt embarrassed and weak that I couldn’t control these raw emotions that were building up, so instead I would shut down.
We continued to talk for about an hour, where I was pushed, and then continued to be vulnerable about the emotional challenge I was experiencing. I had written a lengthy post a month ago about vulnerability, and I am even ironically reading a book on it as well. Over the past two weeks though, I haven’t been able to walk my talk, and I think that is what was scaring me the most. When I finally opened up about all of this, I felt some weight off my shoulders. Now that my mom and Mark knew what was going through my head, I didn’t have to worry about filtering or isolating myself to protect them. I could say what I felt, and most importantly they finally understood.
I wish that one dinner conversation could be an inspirational ending to a rollercoaster of an emotional post, but I think it was just the first step in my emotional struggle with cancer. I am going to keep having this tug-of-war between my raw emotions and what I know I should be thinking/what I know is best for me. Being vulnerable isn’t the full answer, but it is definitely the first step in overcoming this because it helps others understand my struggle, as well as lets me understand how others around me are feeling. I will still need to develop strategies for when these raw emotions emerge by first accepting them, and then putting them at bay rather than shutting down…but that will come with time.
In the meantime, I start treatment this Monday. I have moved into a single apartment in the same building where my Dad is living in Cambridge for the 6 weeks I am undergoing proton therapy. The apartment is right across the river (and one T stop) away from Mass General. I am incredibly fortunate and thankful to have this space during my radiation treatment, so that I can gain back some independence as well as have the ability to get myself around places via public transportation. As I mentioned before, this apartment, and the independence that comes with it won’t fix my emotional challenges with cancer. It will give me a space though to develop strategies and a mindset that I can take with me after the radiation as I go into the long one-year chemo process. What is important over the next 6 weeks is that this increased independence does not evolve into increased isolation, and the only person that can make sure that does not happen is myself. I will need to be more vocal and vulnerable than ever with my family and friends about how I am feeling and what I need for support. In turn, I will need some pushing to make sure I keep being vocal because the opposite…(shutting down like over the past two weeks)…will be detrimental to both my physical and emotional well-being. It will be a team effort, but as I go into my treatment, I am confident it can be done.
This is one of those posts where I consider whether or not I am being too vulnerable in my blog. I worry about that sometimes. Vulnerability is good, but when it is like opening the flood gates of emotions on others, it can sometimes lead to disconnection. This post involved having to be pretty vulnerable about my emotions, but I think it is very appropriate for this blog because I am not the only one who experiences these feelings. I have talked with other cancer patients, particularly young adults, who experience the same struggle between what they are feeling, and what they know would help them cope with their situation. I am confident this emotional tug of war happens to people impacted by all different struggles in life (…illness, relationship challenges, money problems, etc.). This commonality in emotional experience is why I think this blog was so important for me to write. We all may feel alone in what we are experiencing, but more often than not, there are others going through similar feelings and situations…we just don’t talk about it…we don’t share…we don’t choose to be vulnerable. When we are vulnerable and recognize this commonality in emotional experience, it brings us closer together. It creates a unifying bond and connection. It allows us to recognize the challenges we all face, and instead of moving forward alone or shutting down, helps us take a step forward together…stronger.
As a reminder, the above post was written the day before my treatment began. To the worried grandmother reading this, I am doing much better. Talking and writing openly about these struggles has been a healthy way for me to cope with these raw negative emotions…to get my chocolate kingdom to stop melting. If you have ever made chocolate fondue, you know chocolate can be overcooked. If you let the chocolate keep melting, eventually it will thicken. This is true for emotional challenges as well. If you let the raw emotions I have discussed fester without opening up about it, it can become paralyzing.
I like my chocolate metaphor not only because I think it is the best food in the world (…after my mom’s homemade Mac & Cheese), but that chocolate, like one’s emotional fortitude, can be remolded. When chocolate melts, it can be shaped into something new. I view my cancer journey as 1/3 physical…2/3 emotional. The raw emotions I discussed will keep emerging, the chocolate will occasionally melt…but I know I can keep moving forward if I recognize those emotions, and learn how to use them to improve my character and understanding of my experience. To be able to remold my chocolate kingdom into something more resilient…something stronger.