Karen Yao is 40 years old, living in Sacramento with her husband of ten years and two boys, ages 5 and 7. An ICU Registered Nurse for 18 years, she changed paths to work in clinical informatics after her diagnosis. Married for ten years to an airline pilot, Karen and her family love to travel.
Karen and I have history. We met on a message board for young women with breast cancer in late 2008. Together, with a group of 8 other women, we bonded over our fears, our struggles with treatment, our babies and food. I laughed out loud when I read her advice not to take food seriously because there were some serious talks about kale back in those days.
You’ll learn that Karen was newly pregnant when she was diagnosed. You’ll also read that she was diagnosed with metastatic brain cancer earlier this year. Karen’s currently has been undergoing a series of scans to monitor her brain. She is a wonderful writer and keeps her Caring Bridge page updated.
HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?
I was diagnosed on September 5th, 2008 and then in January of 2014 with metastatic breast cancer in my brain.
HOW DID YOU FIND OUT?
I was 6 weeks pregnant – I’d just found out the week before that I was expecting our second child. I was thrilled. I was in bed one night and realized my left breast was really sore. I started poking around and thought I felt a lump. I asked my husband and he was sort of, yeah, maybe there’s something there. At my first OB visit 2 weeks later I asked the Nurse Practitioner I see, Missy, to check it out. She didn’t think it was anything but sent me for an ultrasound anyway. An hour after I left the radiology office I got a call telling me I had an appointment with the breast surgeon at 8 the next morning. I went in for a biopsy and two days later I had cancer.
TELL US YOUR REACTION.
My surgeon called me while I was in the car. It was Friday morning. I was almost home and, to this day, I have no idea how I made it the quarter mile to my driveway. I was crying so hard when I walked in the front door I couldn’t even tell my husband what was wrong. I was terrified but not for me. I was terrified for my baby. I didn’t know anything about cancer in young women much less in pregnancy. Even though I am a nurse, I still didn’t know anything about oncology-that wasn’t an area I worked in. I talked to the surgeon that day but couldn’t meet with an oncologist until Monday. The surgeon had never had a patient who was pregnant with a cancer diagnosis so she couldn’t tell me anything. By that night, I was resolved that I would not give up my baby no matter what. I had no idea what I was in for. I really didn’t. I only knew of two people who had ever had cancer and both of them died within weeks of their diagnosis. I remember putting my 15 month old to bed that night and as I sat watching him sleep I thought, “I’m never going to see him go to Kindergarten.” Then I cried for hours I think. When I woke up the next morning I was looking for anything, anyone who could tell me about being pregnant and having cancer. My husband searched the scientific sites and I searched the blogs and personal story sites and finally met someone who had been diagnosed when she was 28 weeks pregnant. She helped me so much to feel like my baby and I had a future.
WHAT WAS YOUR TREATMENT PLAN?
I had a lumpectomy when I was 9 1/2 weeks pregnant hoping that I would have clean margins. Unfortunately I did not so I had a left mastectomy when I was out of my first trimester (at 14 weeks). At 16 weeks I started my first round of chemotherapy. I had six doses of adriamycin and cytoxan. I finished my last dose of chemo when I was 31 weeks pregnant and delivered my beautiful baby boy at 37 weeks. When he was one week old I had surgery to start my reconstruction process and when he was three weeks old I started another 12 weeks of chemo followed by a right mastectomy. I then started tamoxifen and had six weeks of radiation. I completed my reconstruction at the end of 2009.
HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?
It’s been a tough journey, I won’t lie about that. It’s been a lot of ups and downs. I have struggled with energy. I just have never felt like I was able to get back to pre-cancer levels. At the same time, it’s hard to separate what would be normal for a mom working full-time taking care of a newborn and 2 year old and what is because of cancer. I struggled with not being able to breastfeed my youngest. My husband and I really wanted a third child and I have struggled with the fact that we can’t. I have been in near constant pain as a result of estrogen-depletion therapies. I struggle a lot with sex drive. I just don’t have one anymore. I have tried a lot of things in an effort to keep this area working for my relationship with my husband but it is a struggle and we have a lot of discussions about this.
SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?
My biggest struggle was probably feeling like I was doing a good job of being a mom and a wife. I felt that my low energy level, constantly being in pain and feeling sick made me a horrible parent and an even worse wife. I still struggle with this, especially since my metastatic diagnosis. I’ve dealt with this by not being so hard on myself. By allowing myself to be ok with a less than perfect looking house, by being ok with dishes in the sink and unfolded laundry. I use those times to spend with my boys or with my husband. I look for opportunities to build my relationship with my husband.
FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?
Eat healthy, but don’t take it too seriously. Don’t let food control you. You couldn’t control getting cancer, but letting food control you won’t change that. Enjoy your food and indulge every once in a while.
Take pictures of yourself. You might hate the idea of having pictures taken when you are feeling sick and ugly and have no hair, but you need them. For me, it’s like I was gone from my family for almost a year. There is one picture of me at Christmas and one picture of me when the baby was born but beyond that, from September 2008 until June 2009 there’s nothing of me. You will look back on those and see the strong woman you are and be proud of what you went through.
Get out of bed every day. Even the days you don’t feel like it. Get dressed too. Put on a little makeup. You’ll be amazed at how much better you feel.
Personal photo courtesy of Karen Yao.