Survivor Stories: Ryann…’Chemo is Not the Worst Part’
We wanted to highlight survivors as we approach Cans for a Cure. Ryann's story shows the struggles of getting diagnosed with breast cancer at the young age of 33!
Here's Ryann's story in her own words with a side note at the end...
I was diagnosed with breast cancer at 33 years old.
My husband, Grant, and I were finally ready to start a family.
I began a prenatal vitamin regimen and after a few weeks of taking them, I looked down one morning to see a wet spot on my shirt and realized that I had discharge from my right nipple. Confused by it, I called my mom. I asked, “Does this happen when you take prenatals?! Is my body ‘preparing’ for motherhood? Am I pregnant?!?” She said, “I’m sure it’s nothing, but call your doctor.” So I did. And when I saw my doctor a few days later she said, “I’m sure it’s nothing, but I want you to see a specialist.” And I did. And just a few days after that I met with the specialist, had a sonogram that showed nothing, and she said, “I’m sure it’s still nothing, but I’d like to do a biopsy to be positive.” And at 9:04 a.m. on Friday, October 21, 2001, the specialist told me on the phone that it was, in fact, breast cancer.
I had a single mastectomy with reconstruction at the same time, a seven-hour surgery, six weeks later in Boston. Understanding that Grant and I were in the midst of planning our family, we were advised to contact fertility specialists and were allowed time between the diagnosis and surgery to undergo a round of treatments to harvest embryos. We have six “Ice, Ice, Babies” in storage but have yet to use them. I personally wanted to wait until my fifth year of being cancer-free where statistics and recurrence rates improve for young women and Grant supports me in that decision. To be clear, there are no current studies that indicate it is better for a young breast cancer survivor to wait any length of time, but to me it’s reassuring to do so.
After fertility treatments and surgery, in late December of 2011 I started an IV therapy called Herceptin used to treat aggressive forms of cancer referred to as being HER2+ (HER2 positive). A round of Herceptin lasts a year but luckily doesn’t have the side effects you think of when you think of chemo. It can, however, cause damage to your heart. I then started two different chemotherapies three weeks after my first Herceptin infusion and had six rounds of that every three weeks, lasting until May 2012.
When I was in a pre-surgery bay, curtains drawn, waiting to get an access port implanted prior to starting chemo, I overheard a conversation between two nurses where one had clearly just returned from an extended time off for her own cancer treatment. The other nurse asked her, “What’s it like?” referring to chemo, and the survivor answered, “It’s indescribable. There are just no words.” And I turned to my Mom who was waiting with me with a look like, ‘Seriously?!’
It of course scared us at the time but in hindsight, that nurse was right. There really aren’t any comparisons in life to draw from to explain how chemo feels. There’s just no way to describe it unless you’ve gone through it. It’s archaic. It’s toxic poison that we take voluntarily, knowing it could kill you. And, right now, it’s unfortunately one of the only statistically proven approaches to fighting the cancer epidemic. But a common misconception of the whole cancer process is that chemotherapy is the worst part.
One of the best analogies of cancer I’ve heard is that a cancer journey is like puberty, you are forced to go through it and though the same, you’re also different afterwards.
Cancer has changed my entire life. Chemo has damaged my vision and hearing. My hair has grown back thin and silver. I have long-term chronic bone, joint, and muscular pain. My short and long-term memory has been affected and my cognitive functioning is noticeably worse—noticed and frustrated by not only myself but by friends, family, and Grant. I’m constantly dizzy and fatigued enough that it affects my ability to work. And I have PTSD. Now, almost five years out from my diagnosis, I may look like my 38 year old peers again, but I don’t feel like them. And I’m finding that this is a common scenario for other young women affected by breast cancer.
Noticing a lack in support options for younger women in the area, a fellow survivor and I have started a support group through the Young Survival Coalition for other young women who have survived a breast cancer diagnosis. We meet once a month at the Cancer Community Center in South Portland and discuss topics and issues we now have to face—physical pain, emotional pain, adjusting to our ‘new lives,’ fertility issues, how cancer has affected parenting, financial issues, and of course, the fear of recurrence. Though I am a facilitator in this group, meeting with these ladies helps take the loneliness and isolation out of my post-cancer life.
I've been chatting with Ryann (via email) about her story - she was concerned that it seemed a bit Debbie Downer and wrote this...which I think is perfect.
I think I have a constant inner battle of trying to not be THAT girl who constantly whines, complains, and blames cancer for everything, so I suck it up and put on my game face...but then there are days that I want to shout it from the rooftops that it's not over and it's not fair.And it's definitely not always woe-is-me and hum-drum, there are many beautiful moments that came from the process, but I guess I'd like people to know that it doesn't end with chemo.