Going Dark- Addressing the Emotional Impact of Cancer

I started radiation treatment on August 13, 2020 and finished on September 17, 2020. At some point, I'll write a post about my experience with radiation.  Today, I want to talk about the toll that cancer takes on mental health. 

Breast cancer, or any cancer, is so much more than a pretty, neat ribbon.  It is messy. It causes people and lives to unravel in various ways. Cancer robs you and those around you. That is a fact. My 2 year old son knows the words "cancer, chemo, radiation and surgeries."  He's seen my drains following my mastectomy and thought they were juice packs. My daughter asks when I'll be "done with cancer." I tell her after my next 3 surgeries.

The truth is, never. 

I know that there are positives, but  I'm allowing myself to share with you the negatives, and be okay with that. It is not always good, sometimes it just is. I don't think I'll ever feel comfortable saying that I'm "cancer free." Unfortunately, we just don't know if that's the case.  There could be one cell left in my body waiting to replicate. For now, I'm in remission.

Now that radiation is in the rear-view mirror, and my active cancer treatments are complete, I am waiting for my body to heal enough to be ready for my upcoming surgeries. It's during this "down" time that I've started to emotionally process what I've endured this past year. Quite literally, I fought for my life. I was poisoned (chemo), cut apart (mastectomy surgery and explant surgery), burned (radiation) and put into an early chemical menopause. All of this so that I have a greater chance to see my daughter grow from a girl to a woman, my son's tiny voice become a baritone, to grow old and crotchety with my husband, and experience the countless other things in between. The recurrence rate for someone at my stage of breast cancer is 20%. That means 1 in 5 women in my position will have the cancer come back.  Local recurrences are rare, which means that if and when the cancer returns, it has already metastasized (spread) to other areas of the body like the bones, lungs, liver, or brain.  In some ways the end of active treatment has been the most challenging because of the idea that I can now go back to "normal."  There is NO "going back" to normal.  My cancer diagnosis was a pivotal life moment. There is life before cancer and life after, and with the specter of, cancer. 

I've recently started to follow an Instagram account called "@thecancerpatient." It's been wonderfully validating and identified some of the feelings I didn't realize I was experiencing. It's also given me permission to feel those feelings and not be "ok." It's as if I've gone 10 rounds, and now my mind has a break from looking toward the next battle, and is finally breaking down. I'm getting in touch with the very terrifying thought that I could have a recurrence and not be here in [insert number ] years. I'm stuck in a sandwich consisting of the following ingredients: FEAR OF RECURRENCE and DEATH/ ME / LIVING LIFE TO ITS FULLEST. Facing my mortality is terrifying.  I'm not so much afraid of dying itself, but of leaving my children and family behind. There is so much more I want to give them (arguably fodder for their future therapy sessions), but to think that I may not get the chance is utterly horrifying.  I told you I would be going dark. 

I know that this has been a departure from the normal tone of my posts, but I wanted to let you know all know that sometimes the hardest part of cancer is being "done" with the active treatments and you're expected to "go back to normal." There is no returning to what used to be normal.  It will be a different normal, with the ever-present specter of cancer recurrence. This doesn't mean that I won't enjoy things, laugh or take time for the things I want to do. But I think that this aspect of cancer is often overlooked or not discussed. It is extremely difficult, but it's okay to address and acknowledge these feelings and sit with them. I think it's essential. 

One other note, it can be harmful to say that a cancer patient "needs to be positive" to try to avoid cancer or a recurrence.  I'm not discounting the value of being optimistic, and personally, I try to find a silver lining in most things. BUT, I absolutely worry about recurrence and hearing that I "need to be positive" implies that I have some control over whether the cancer comes back based on my attitude.  Already, I fear that my even worrying about it means that it'll be partly my fault if my cancer returns. Maybe that's the lie we tell ourselves so we feel the illusion of a modicum of control when we have none. 

My daughter has asked me whether or not I'll go to heaven before her.  She has asked me to promise that if I go before her, that I'll take her with me.  It's heartbreaking to see my daughter look up at me with her big earnest eyes, hugging me tightly with her small body pressed against mine. I look at her and tell her I won't go to heaven until she is very old and I'm even older. But as I say that to her, I know that cancer may yet make a liar out of me.