By Carrie Ellman-Larsen
I know what I was told. I was told that it was going to be a hard year; a mastectomy, chemotherapy and radiation. I was told that I was going to lose my hair but it would come back and while it did, I’d get to wear cute hairstyles. I was told that I’d lose some energy and might feel sick but once it was done, I’d return back to normal. Normal. That’s a word that I heard a lot referring to what would happen when I finished treatment. I found “normal” to be far from the truth.
I was diagnosed with stage 2B breast cancer in my right breast and lymph nodes at age 37. My son was 19 months old and we had just weaned from breastfeeding. I was working full time as a teaching artist, my passion, and beginning to consider ways I might advance in my career. Secretly, I was also beginning to think about what life might be like with another child. Originally I had said, “one and done,” but, as Mother Nature tends to do so well, I forgot about the lack of sleep, the spit-up and the aching raw nipples. I remembered the cuddles, the first giggles…the first everything. But when you are diagnosed with cancer, many of your plans for the future get put on hold or changed forever.
I endured my treatment like a trooper. I made jokes, smiled (and cried and threw a few temper tantrums) through the tough days and created a mantra to get me through the hellish days, “a blip in time,” to remind myself that all pain and discomfort would pass. Through my six months of chemotherapy and 15 sessions of radiation, I checked each treatment off my calendar until the end, when my life would go back to normal. I looked forward to spending long days with my son without feeling completely warn out. I was excited to work and not be afraid that my chemo brain would completely derail or ruin me professionally. I wanted to hang out with my friends, drink wine, eat sushi…hell, I just wanted to be able to taste my food again!!!!!! I was excited to not spend time every week at the cancer center and to get back some time for myself. I was ready to look normal again, to not look like a cancer patient and to get my body back.
When you are going through cancer treatment, you are surrounded with support; support from your medical team, family, friends and, if you are lucky like me, colleagues and bosses. But, when treatment ends, a lot of that support goes away. At one point you are seeing your oncologist every 2 or 3 weeks and suddenly, it’s every three months. Of course you can call whenever you need something but, in their eyes, they have done their job. Now your job is to get back to living life.
Or now that your hair has grown back, your colleagues figure that the worst is over and that you are feeling better and can return to work as you did before. What they don’t know is that cancer related fatigue can last for years.
The offers for home cooked meals, laundry help, and childcare also start to dissipate. When treatment ends, so does a lot of the help that came with it.
It wasn’t long after treatment ended that I realized returning back to my normal life was unrealistic. I no longer looked like myself, even with my hair growing back. I developed major body image issues (remember sixth grade people?) because of treatment related weight gain and the whole one boob thing. I looked in the mirror and didn’t recognize the woman staring back at me. This was disconcerting.
I didn’t feel like myself. I remember one-month post chemo, I tried to take a bike ride for exercise. My husband encouraged me to go for a long ride. I almost didn’t make it home. My body was no longer capable of doing what it had done just six months prior. This included exercise or for daily endurance for things like raising my son, grocery shopping, scrubbing the bathroom…whatever.
I can go on and on about why life wasn’t normal. But I think the hardest thing for me after cancer was dealing with the trauma of what had happened to me. I fought so hard for so long and suddenly, it was over. I didn’t know what to do next. I didn’t know what was supposed to come next. I kept thinking I would feel the same, think the same and look the same as I did before cancer. None of those things happened. Instead, I felt like I was living in a body that wasn’t my own and having thoughts and feelings that were different than what was normal for me.
Depression post-cancer is very common and it was happening to me. I was afraid every day about recurrence. I was afraid every day that I couldn’t live up to everyone’s expectations of me or the expectations I had for myself. And managing post-treatment side effects like lymphedema and fatigue were more difficult than I anticipated.
I don’t write all of this to scare people. I write about it because it is the truth for many of us. I think what is hard is that breast cancer is depicted as this “happy” cancer or “party” cancer. I mean, what other cancer is celebrated with pink feather boas and t-shirts that read, “fight like a girl” or “breast cancer warrior?” We see images all of the time of bald women surrounded by their friends, covered head to toe in pink and smiling and cheering. We hear stories about women who say that cancer was a gift and has changed them for the better. We see these images and hear these stories but that is not everyone’s reality.
Some people hate the color pink (who me?) and don’t feel empowered by pink glitter and cosmopolitans. Some of us don’t like to walk with Komen with every girlfriend we’ve met since Kindergarten. And some of us think cancer was a curse and feel that it didn’t change us for the better. Some of us are angry about what happened to us. Some of us, instead of not sweating the small stuff (we aren’t supposed to sweat the small stuff anymore, we’ve been through worse) feel that each wound, no matter how small, cuts more deeply. And some of us, after cancer, have a hard time.
This is not true for everyone. I have met so many people who have gone back to living their lives and living them well soon after treatment was done. We read about these stories in the papers and the breast cancer websites and blogs all the time. Many of the stories we hear are the ones where there is a happily ever after. But, if you are not living happily ever after, after having cancer…you are not alone.
Here’s what I will say. I am two years post diagnosis. As of just two months ago, I stopped crying every day. I still think about cancer every day but I’m not crying. That’s a big step. I am also finally starting to think about my future and with the help of a therapist, I am defining my new normal. It’s hard work to redefine yourself but I’m finding the effort worth it.
Life after cancer might not be what you expect. Know that whatever you are feeling, thousands of others feel the same way. Know that there’s no right or wrong way to do cancer or to feel after breast cancer. Also know that there is help for you if what you feel isn’t like a “warrior” but like you have been defeated.
You are not alone.
You are not alone.