When I wrote the tagline to this blog – navigating the roller coaster of being a breast cancer survivor – I had no idea how true it was.
Shortly after I finished chemo in September 2012, I mustered the energy to attend my first support group for young women with breast cancer. My mastectomy and reconstruction surgeries were behind me and I was about to start radiation. I finally felt ready to start talking to other women about what I was going through.
At my first support group meeting, one of the women said that she found being a survivor harder than being in active treatment. She said life as a survivor is full of ups and downs. Tears streamed down her face as she explained her range of emotions. I kept looking at her, then looking down at the floor, thinking she was out of her mind. How could being a survivor be harder than being in active treatment? Chemo, surgeries and radiation, having doctors appointments every week (if not multiple times a week), loosing your hair, chemo brain, nausea, depression, exhaustion … the list goes on.
Well, now I’m a survivor (I hate that term, but that’s another post for another time). And now I get what she was saying.
I’m happy to now be cancer free for 2 years, but the fear of a recurrence is something I think will be with me forever. Worrying about the aches and pains that used to just be a passing thought, now leads to sleepless nights and anxious days.
About a month ago I started feeling some soreness in my pelvic area. I wouldn’t say it was pain, but it was definitely not a normal feeling for me. The rule in cancer world is that if something feelings wrong for two weeks, its time to contact your doctor.
Since completing treatment, I’ve been exercising more. I have gotten back to swimming 2-3 times a week. And I started running again, after a 2-year hiatus since my cancer diagnosis. So I was hoping that it was just my body getting used to more physical activity with my new body. But there’s always that little voice in my head that says, “Oh fuck. Here we go again.” Its hard to quiet that voice down.
So after two weeks with the soreness persisting, I emailed my gynecologist to ask her about it. I was hoping she would say it was nothing to worry about, but because of my history and my BRCA2 mutation, she always errs on the side of caution. It’s one of the reasons she’s my gynecologist. She doesn’t make me feel crazy for wanting to check out an ache or pain. She’s just as worried as I am when something doesn’t feel or seem right with my body. Well, maybe not just as worried, but you get what I’m saying.
I called my mom to tell her what was happening and I totally lost it. I just couldn’t stop crying. The fear was really bubbling to the top. I could barely get the words out of my mouth to explain to my mom what was going on. My mom was so great. All she said was, “I’m here for you and we’ll get through this together.” It was exactly what I needed to hear from her.
As you can imagine, the night before my appointment was a long one. Could this really be happening?
I went to my gynecologist and did an ultrasound. As I lay on the exam table, in the stirrups, starring at the image on the screen, I couldn’t help but go to that bad place – ovarian cancer, more surgeries, more chemo. Would I survive this?
The technician said that she didn’t see anything of concern but I should wait to hear the official word from my gynecologist. She even said I had a beautiful uterus. That certainly made me laugh and calmed me down a bit. A beautiful uterus – ha!
My gynecologist quickly came into the room and said everything looked fine. But she wanted to do a pelvic exam just to double check. Nothing showed up there either. She told me everything looked good. She said it could be tamoxifen that’s making me achy. Or it could be the exercising that I’m doing. I haven’t used a lot of those muscles this much in 2 years. So my body might be adjusting. Then she said, “It might be just because you’re getting old.” I should be so lucky to have aches and pains from getting old.
So I left her office and immediately started crying. I felt like I dodged a bullet. Still cancer free. Saying I felt relieved is an understatement.
Life as a cancer survivor is rough. Every ache and pain is a concern. That little voice in my head never goes away. There are moments of being happy that I’m alive and grateful to have so many wonderful friends and family members that I love and love me. But I also have lots of moments where I’m scared to not be able to live a full life doing all the things I want. Every week I hear about someone who’s died from cancer. Not that dying of cancer at an older age is any easier, but hearing of young adults dying really hits home. It’s hard to silence that little voice in my head that wonders if that’ll be me in the near future.
Two years after my diagnosis and I’m still learning how to navigate the roller coaster of being a breast cancer survivor – taking it one day at a time.
I can relate to everything you are saying here. People will never understand what this means. They think after you’re done with treatments you should go back to “normal.” “Move on,” as they say.
Survivorship is full of challenges, especially for someone as young as we are because there are still plans to be made, things we would want to accomplish (not saying older people don’t need to make any plans, of of course). But making such plans becomes challenging when you don’t know what tomorrow will bring.
I keep reminding myself EVERYONE is mortal. And no one, not even us cancer patients, know when we will face mortality. But we no longer feel safe. We are always in the look-out because we don’t want to drop the same way we did when we were first diagnosed.
I totally get it. I wish everyone did.