Kristen sat in the salon chair with her toddler son on her lap. Together, they watched in the mirror as her long blond hair got shorter and shorter. Finally, her husband and brother take the first shaves with the buzzer. Soon, the girl staring back at her in the mirror was bald.
The story began months before this day when Kristen was “just” a mom in the midst of parenting her 15-month-old son, Grant. She was still grieving the loss of a twin pregnancy. She and her husband, Matt, were waiting for life to calm down before trying for another baby.
Instead, the unexpected happened. Completely on accident, and very luckily, Kristen found a lump high up on her left breast. Assuming it was a blocked duct since Grant was starting to wean, she tried massage and warm compresses. When it didn’t go away, her OB/GYN ordered a mammogram and ultrasound which determined the lump was indeed a solid mass. But, with Kristen’s age of 32 and good health, her doctor reassured her it was nothing.
“I still wasn’t that concerned,“ Kristen said, remembering back to that day. The surgeon said with her nursing history, she could just wait until her son, Grant, was weaned in a few months.
When the surgeon left the room, she sat there listening to her instincts that told her to push ahead and request an immediate biopsy.
The next week, on August 28, 2012, the shocked surgeon delivered her diagnosis – invasive ductile carcinoma.
Kristen, a pediatric surgery nurse practitioner at Children’s Mercy, had already shown her ultrasound images to her coworkers.
“Based on their expressions, I kind of already knew.”
The next two weeks were filled with doctors’ appointments, scans, second opinions, oncologist consultations and fertility specialists. An ultrasound and MRI (more reliable than mammograms in young women with dense tissue) revealed a secondary cancerous mass and five suspicious lymph nodes on a PET scan.
“You’re so stunned. I remember lying in bed crying … I just want to watch Grant grow up. I just want to survive and see him graduate, get married and have kids. I wanted to do all those things you just take for granted, and then all of a sudden you realize it could be threatened.”
Kristen eventually endured six rounds of chemotherapy. Chemo infusions came on Thursdays, and the clock started to tick – only 48-72 hours where Kristen would feel good. Her family took advantage of that window with trips to Union Station (Grant’s favorite) or a visit to Santa Claus. By Saturday night, she’d start feeling sick and would continue feeling bad for seven days.
It was two weeks after the start of chemo when the hair loss started. At first, a few more strands than normal started appearing in her hairbrush. But soon, even her ponytails looked thin.
“You don’t feel in control of your body. Everyone is making decisions for you. Then, you lose your hair and you’re not in control of that.”
After the second round of chemo, Kristen went shopping for cute hats and made the decision for herself. Without shedding a tear, she said goodbye to her hair, empowering her for the journey ahead.
On Jan. 3, 2013, Kristen had her last chemotherapy infusion, but her fight wasn’t over. Once her blood counts again reached a normal range, she had surgery for a double mastectomy. Ninety-five percent of her breast tissue was removed, greatly improving her chances of survival. Pregnancy wasn’t an option for at least five years due to continuing medications; so preserving breasts for nursing wasn’t worth the risk to her life.
“It’s all a process. You never forget that first moment you walk by the mirror with reconstructed breasts with no nipples. When you walk by a mirror and see how you look it’s startling. It becomes your new normal. And you almost forget what it was like before that. But, everything’s not bad! There are perks to having a mastectomy. You don’t ever have to wear a bra, and nobody knows when you are cold.
“I laughed a lot through my treatments. You have to sometimes; it really helps with the difficult times.”
Although the surgery is something she can joke about now, it was a physically painful process and left Kristen unable to help with her son’s care for two weeks. Grant, almost 2, would cry for his mom for hours in the middle of the night.
“He really struggled. He knew something was going on and had no way to express himself. It was like the newborn period for Matt all over again but with a sick wife on the couch that needed care.”
After surgery came months of discomfort with reconstruction and infusions of a targeted therapy, herceptin, every three weeks for a year.
Throughout treatment and surgery, Kristen’s biggest challenge was wanting to fight the disease with all of her strength – but that meant she was frequently unable to be the mother she wanted to be.
“Reaching out to support a mama going through any cancer treatment is so helpful. Keep in mind, they love their kids and need their children around to keep moving forward, but they need help in being the mom they want to be – shopping, cleaning, cooking – so that if they have just a few hours between treatments and they feel like they can tackle the world, they don’t have to … they can just BE with their family. “
Kristen had been the significant care provider prior to her treatment, so having to step up into her role as well as be a support system for his wife was challenging for Matt. There were conversations about fertility, the future and the need for empathy in times when the experience was uniquely female.
“It’s a grieving process because you’re losing the life you thought you were going to have. You grieve the loss of a normal life. You grieve the loss of your hair. You grieve the loss of parts of your body. Matt wanted to fix it. He wanted to make it all better. It was hard on our marriage and in the end, these things always bring you closer together.”
Kristen’s treatment story is hopefully nearing the end – but her cancer story isn’t.
“Once you have cancer, it changes your identity forever. You’re a survivor, but you’re always at risk of it coming back. You just try not to think about those things but you have times when you go to those places. Especially when your life isn’t about you anymore and thinking about missing out on everything.
“The thought of Grant going to the park with someone else and not me … it’s too much to even think about.”
Kristen now has six month follow-up appointments with her oncologist. Next August she’ll reach the three-year milestone – a time period when aggressive cancers usually show their face. Five years after treatment is thought of as the magic landmark for cancer recurrence. Over time, the chances of it returning decrease; however, the cancer can always return, even 20 years later.
“The hardest part now is just living with the anxiety of it coming back, and the ramifications it has for your life, trying to figure out where we go from here. You try to be normal. You try to be thankful that you are done with treatment. But it’s terrifying not having the cancer-killing meds streaming through your body and someone examining you head to toe every seven days. Everyone moves on and you are supposed to get back to life and be thrilled about it. But life is different; it always will be.”
Breast cancer will be as much a part of Grant’s story as it is Kristen’s. Now 3, Grant doesn’t recognize pictures of his mom with her pre-cancer, long blond hair and during play will attempt to hook up a piece of string to the spot where Kristen’s port used to be to give her “medicine.”
Kristen wants her son to remember the moments that tell the story of their family.
“I want him to know about what we went through, how much we stuck together and that we ALL survived, our whole family, because of the love in our family and friends and because of our heavenly Father, who is holding us the whole way. I want him to know that no matter what happens, hold each other tight, hold on to your faith, and the road will undoubtedly make you a stronger and better person.”
I loved reading more of your story, Kristen! I can remember distinctly thinking the same thoughts about “someone else taking the kids to the park”, I still go there sometimes and I HATE it! So sucky going through this, but glad I got to meet YOU!