The “In-Between”

One day, someone who just finished their active treatment asked me, “So what is survivorship?” At that moment, I suddenly froze, even though I’ve been in “it” for several years, I didn’t have an immediate response for her. I feel like my definition of survivorship is constantly changing and evolving. Technically, to be a “cancer survivor” means to be someone who is diagnosed with cancer and continues to live through it, so “survivorship” is the period of time after a diagnosis, right? This definition of “survivor” resonated with me – I felt like once I heard those words, “You have cancer”, my world shattered, yet I survived the medical trauma of a cancer diagnosis. Getting a diagnosis at age 35 felt like a freight train hit me and my life was falling apart. Every time I am put back into the same room where I first got my cancer diagnosis, all the memories, emotions, sights and sounds hit me like a wave. But now that it’s been more than 5 years since my original diagnosis, my toolkit has changed. I have become more mindful and aware of my stress responses and remind myself that breathing is my best immediate coping mechanism. Breathing is my anchor and my grounding source.

“Survivorship” is a different beast. There was the active treatment phase where I had to do my best to follow the oncologist’s orders, just to get the cancer out of my body as soon as possible. When I was doing chemo, I was even a bit militant about having my husband switch out my ice gloves and ice socks every 20 minutes to try to minimize getting long-term neuropathy. And after active treatment, my “survivorship” actually began. Others who see us growing our hair back, getting our energy moderately back, and getting back to work, etc., think that we can be our old selves again. There are sets of expectations that are imposed by society, family, and even ourselves, but after a rough ride of treatments, that’s often not the case. It might take days to years to have some sort of relief from side effects and sometimes we might not regain certain functions at all. There is a whole grieving and acceptance process that has to take place after treatment ends and doctors’ appointments become less. When we are in treatment or taking medication, it feels like we are actively doing something. But when the doctors stop prescribing medication/treatments, it feels like cancer will creep up on us again. Then when treatment stops, we have to deal with the “security blanket” being lifted and the feeling of the “sink-or-swim” hits. When that happened to me, what helped me a lot was when my integrative medicine doctor reminded me of all the other mind-body practices that I’m still doing to keep “actively treating” cancer. She asked me to visualize my body as a medicine bottle or vessel, so when I do things like work-out, yoga, qigong, taichi, EFT tap, meditate, make connections, sleep well, eat well, etc., I’m filling my medicine bottle up. This gave me some control over my choices, well-being, and health.

One of the biggest struggles of survivorship is managing our mental health. As a metastatic survivor, I often feel like I’m having to live in between scans. When there is a health scare and something looks “suspicious”, sometimes that window between scans becomes smaller. When there’s “no evidence of disease” or “stable disease”, sometimes that time frame gets bigger. However, this also makes it really hard to plan, make decisions, and regain trust in ourselves and the process. At times, I feel like I’m giving the scans too much power but it also feels like that’s the hard reality. It’s always a fine balance of being vigilant about what our bodies are trying to tell us, and also being too cautious where we lose sight of actually living by letting the fear and anxiety take over us. It’s really hard to sit in the unknown, or the “in-between”, and having to wait for results. I’ve experienced it more often than I would like and I had to learn to live in it, even though it feels so groundless.

Meditation has given me a lot of solace and has opened my mind up to embracing the unknown. It’s important for me to practice regularly to keep me grounded especially with the busy-ness of life and when all the emotions arise during an event like going to a doctor’s appointment. My practices really keep me centered, bring me back to my body, and relieve my anxiety. In the last year or so, I discovered that meditation is not about quieting the mind; it’s more about observing the thought, letting it go, and being present in the moment by going within. It’s also important to set an intention during the practice and cultivate a quality that we want, such as peacefulness, and envisioning how that feels in our bodies. It usually brings me a tingly, calm feeling. I’ve noticed the subtle differences in how I feel afterwards and it took years for that to “click”. There is no way to completely quiet our minds and it’s more about taking the time for ourselves to reflect on the principles of life and what’s going on in our bodies and minds. My meditation instructor taught us to use a mantra when our minds are trying to grip for answers during times of uncertainty. “I don’t know what’s going to happen. Maybe yes, maybe no. We’ll see. I give myself permission not to know. There is just so much I can control and knowing the answer is not one of those things at the moment. What I know now, is that I am here and I am doing what I need to do at this moment. If something has to be, I will know then. I will have the answers that I am looking for then. But right now, I don’t know and that is ok. Whatever it is, it’s a part of me and I will embrace it and accept it as part of me, and that it makes me unique.” It’s ok to feel like I’m just floating down a river at the moment and not having to be at either bank to know the answer. When my time comes to get on a bank, then so be it, I’ll deal with it then.

The new thing that I’ve been experiencing lately is survivor’s guilt. I didn’t understand the term until recently and didn’t know how it would manifest in me. Being in the community of survivors and getting to know people from across the globe is magical. We always say the cancer community is the “worst club with the best people”. There’s so much truth to that. I feel like once I find out that someone is a fellow cancer survivor, there is so much to talk about and we become close. But it also comes with its drawbacks at times. I’m an empath and so I feel a lot of emotions when I see people struggling or going through hard times. It took a toll on me because all I wanted to do was help take away their suffering and I felt a deep sense of helplessness when I couldn’t do that. When I lost a loved one to cancer, my chest clinched, I sobbed uncontrollably and dropped down to the floor in a fetal position. It felt like there was nothing that I could do. But I have to remind myself that other people’s stories are not my own and I can’t take it upon myself to help sometimes – that’s not my responsibility. I’m trying to learn to be a supportive listener rather than a fixer.

Medical trauma has its way of seeping into our lives and taking over in unexpected ways. It is hard to let go of the past because of what we went through. A lot of us were seemingly living “normal” lives and then cancer derailed us from our paths and plans, and made us patients. I often think, is letting our past experiences guide us in making more informed decisions a form of letting go of that trauma? I think we can use our past experiences as part of our acceptance process, but that might look different for each person. Does the “finality” or “ambiguity” of past experiences affect how they impact us? If we can’t change something anymore, like having gone through an irreversible surgery due to cancer, then we should definitely give it space and grieve our missing body part(s), but we can’t let it hold us tight and make us feel stuck. I had a hysterectomy; I can’t carry children of my own and have to mourn and grieve that. But I’m finally starting to learn to cope and look for alternatives (if having kids is really in our plans). As for my cancer journey, if there are other treatment options that open up as alternative plans for a recurrence (ie. Hormone therapy vs. chemotherapy vs. immunotherapy), then knowledge of the pros and cons and past experiences can help me move forward and approach those options in a new light by weighing out the best option for me. Before cancer, I never knew about or paid attention to the various side effects that medications can create. Now, I’m aware that drugs can address one issue but may also lead to other side effects. It feels like such a slippery slope, and the medical team doesn’t always tell us about all side effects or how to manage them. And then there’s the part where we just want to be extra cognizant about things and make more appointments and do more scans so that we can catch things early. But doesn’t that also cause more panic and anxiety?

These are all struggles that cancer survivors have to experience and there are a lot more that I haven’t even mentioned. But when we talk about these things with non-survivors, they can sympathize but can’t fully understand, and we may scare them away by talking about cancer too much. What I know is that there is a community out there that understands and I’m so grateful it exists. Friendship, love, and support from the community have been treasures to me, and I’m happy to walk alongside other survivors. One of the things that I appreciate is hearing about other survivors’ experiences and perspectives, which may very well vary from mine. These different perspectives can also add so much color to my world and I welcome conversations and connections as I’m floating down my river.