Jules Berg: How I honored my emotions as a patient

Contributed by Julianne (Jules) Berg

I was diagnosed with colorectal cancer six years ago. I’ve got some skin in this game, and I know a little bit about how it’s played. However, my emotions about cancer still take me by surprise and bite me in the butt (pun intended) sometimes.
 
I’ve had surgery, chemo, more chemo, more surgeries, radiation, and now I must endure chemo for life. I have rolled with all the punches that cancer has thrown at me. Logically, I know that each new CT scan will show new growth, and I am able to process that information without too much angst. Most days I am good emotionally. Most days I am able to simply live my life and be happy that I am as healthy as I am. Some days, however, my emotions sneak up on me and grab me by the throat. 
 
Last month, I had an MRI because of intermittent pain in my back and my hip. The pain had gone away by the time of my appointment, of course, so I was thinking that the MRI would be a waste of time. The next day I got the results, which indicated ”suspicious for new metastatic progression” in my low spine. My oncologist was unsure if the MRI showed true new disease or if they were changes from when I had radiation to that area. I had to wait for the radiation oncologist to weigh in and, while I was waiting, I was feeling a LOT of feelings.
 
As I sat in limbo, the results hit me hard and I cried. I know that my disease will progress (in truth, it has never stopped progressing), and yet I was so saddened to see the possibility of progression in black and white.
 
Here is one of the places where the hard work of being a cancer patient lies: how we choose to respond to bad news. We all freak out when we get bad news and jump to worst-case scenarios. The work happens when we intentionally choose how we will respond. Do we stay in the worst-case scenarios, in despair, and in feelings of hopelessness? 

Society would have us believe that all we need to do is think positively, that somehow positive thinking will magically make all our troubles melt away. Ummmm … no. We need to honor our feelings, even the painful, hard, honest ones. That said, we do not need to wallow in that place. Honoring our fear and pain can be as simple as acknowledging it. We can then recognize that feelings are not facts, they are simply feelings. Not right or wrong, just feelings. Then we can make the intentional choice of how to respond to our feelings. 
 
Do we stay with the negative feelings or do we try to embrace a more positive outlook? Maybe gratitude or hope? What do we do if we can’t grasp positive feelings? If they feel impossible to embrace? That’s OK, too. Here’s what I did … 
 
While I was waiting for the radiation oncologist to get back to me, I couldn’t hold on to the sliver of hope that my oncologist gave me -- that the changes were from an earlier radiation treatment. So I did the only thing I knew how to do. I took a deep, slow breath and accepted that there is room for BOTH despair AND hope. I chose not to stay in fear. I recognized that my support network could hold a space of hope for me when I could not, when fear was pushing hard at my heart. I was grateful that they could hold hope for me when I was working so hard to not let fear rule the day, when the only thing I could do was breathe and wait. 
 
The radiation oncologist finally did get back to me. There is new disease in my spine. This means a procedure to strengthen the vertebrae and then more radiation. It is overwhelming, the things we do to keep this disease at bay, both physically and mentally.
 
I really thought that I was over the sadness of seeing my disease progress, that it couldn’t surprise me anymore since it’s always progressing in small increments. This new progression wasn’t a big increment either, it was just more. I am both surprised and not surprised that I reacted to this. I know that I’ll have more processing to do as my disease progresses. I just thought it would happen later, when my disease kicks into high gear. Not with these small incremental changes.
 
The mental toll of being a cancer patient/survivor is untold, it is heavy, and it requires constant work. Work that we don’t always want to do. Work that maybe isn’t even fair. Yet we have to do it if we want to embrace happiness and joy and, heck, if we want to embrace “normal” (whatever that is). 
 
The mental toll on our caregivers, in my opinion, is even greater. I lean heavily on my husband and my friends. They hold all my fear, pain, angst, happiness and joy, even my feelings of being a burden. These feelings can intensify over the holidays, when we are “supposed” to be thankful, joyful, grateful. 
 
The truth is, we hold all these emotions and more simultaneously - and that is NORMAL. We all need help processing our thoughts and emotions, even when we are feeling “OK.” We are a mess one day, then we are fine the next, and so on and so forth. We do not have to stay in this yo-yo pattern. Please reach out to your support network, to professionals to help you as you walk this path. We do not have to do this alone. 
 
And yes, for those who may be wondering, I have just scheduled an appointment with my therapist. 

Julianne (Jules) Berg is a colorectal cancer survivor from Virginia and a volunteer Ally Author with the Colorectal Cancer Alliance.