I’ve been thinking a lot recently about the things cancer takes away; the things they kind of tell you, but not very clearly or directly or in any way that enables you to prepare. It was almost a year ago when I had my mammogram, the one that led to a call back for more images of the left breast, and finally in early December a diagnosis of invasive breast cancer. All that to say it’s been nearly a year since my journey here began.
I’ve lost a lot in the last year. My breasts — yes — but also other things that are harder to see or measure or quantify in any way. I’ve lost my health. Or the illusion of my health. I will from this day forward continue to wonder if every ache/pain, cough, lump, or headache is in some way something more sinister. I know my cancer is gone, that I have no signs of disease, but I will never again feel safe or immune or free from the worry of recurrance. And I know there are those who do not understand that. Or who will understand, but urge me to let it go, to be grateful that I am alive. I can only say it’s so much more complicated than that.
I’ve lost too a great deal of strength and stamina. Between my surgeries and my recoveries and now my drug regimen and its side effects, I find it hard to commit to exercise, though I know that alone could easily define the difference between feeling better or feeling worse. I have not even come close to regaining my pre-surgery level of fitness. I am no longer strong, and my left arm is a tangle of knots and cords and scar tissue that prohibits my full range of motion. To say that I used to run/walk 3-4 miles a couple times a week and do cardio and strength-training means nothing, to say that I used to do anything means nothing. What was is behind me now. I know I need to find the path forward.
In some ways too little is made of recovery, of the emotional fallout that can overshadow even the most daunting physical challenges. We are expected to bounce back and be strong. To fight this thing, to overcome. To reclaim our lives. But nothing is the same. I don’t know what the answer is, I don’t know how to ask for what I need because I have no clue what that is.
It kind of boils down to this: I am grieving. I feel a tremendous sense of loss. But I am stuck in an endless loop of anger and sadness and shock. I still can’t believe this happened to me. I look in the mirror and I no longer recognize myself. There has been a profound physical change. My body is scarred. And, there’s no sense talking about all the ways in which my body is better now, post-surgery. Well, okay. It’s currently a cancer-free zone, but even in this better state, this cancer-less state, I feel a tremendous disconnect. I am haunted by phantom pain and the pinging of nerves trying to regenerate, and the ceaseless pulling and tugging of scar tissue. Clothes are uncomfortable, I still can’t tolerate the feeling of a waistband or pants with a zipper.
I know I’ll get past all this, but I can’t help but wonder why it isn’t openly discussed. Why doesn’t anyone pull you aside and say good lord this is going to suck for a very long time. Instead, we are bombarded by language that is supposed to make us feel better. We tell ourselves and each other that everything is fine, even though it isn’t always true. Saying I am fine shuts down the conversation, it closes the door on expressing worry or fear. And it prevents anyone from getting too close. But I know it is the thing people want to hear. They tell me I’ll be fine, and I agree. Because saying anything more is too hard, too scary, too incredibly complicated.
In the absence of a timeline, I really don’t know how long it will take me to find my way. I want to protect my family, my friends, from that ridiculous loop of anger and sadness. I really want to be fine. So I say it.
I only wish I didn’t have to.