I’m new to this…can you get me up to speed?
Welcome! Back in 2007, I was 30 years young and found a lump while nursing my baby. You guessed it, the biopsy showed it was breast cancer. I had a lumpectomy (with clear margins and no lymph node involvement), six months of bi-weekly chemotherapy (Adriamycin, Cytoxtin, Taxol), then seven weeks of daily radiation. I started on Tamoxifen and thought the dark year was behind me. Just three months after radiation ended, a scan showed a recurrence near the original tumor site. This lead to a full body (PET) scan which showed several tumors in my bones. Once the cancer has spread outside the breast it is Stage IV breast cancer which is incurable and terminal. I was 31 and forced to truly confront my own mortality.
Since being diagnosed with Stage IV breast cancer in 2008, I’ve been on over a dozen different treatments (chemotherapy, targeted therapy, anti-hormonal therapy). I’ve experienced times where the disease has been stable (yay-no new tumors, but the current ones weren’t shrinking) and I’ve had many times where the current treatment was ineffective meaning the cancer was growing and spreading. I’ve also had radiation to six different parts of my body to relieve pain or help stop the cancer from spreading or breaking a bone.
I continue to be an advocate for my own health and educate others about metastatic breast cancer. I am a Professional Cancer Patient which requires staying up to date on the latest research, trying to find clinical trial options, and connecting with newly diagnosed patients; helping them make sense of the nonsense of cancerland.
What’s all this “legendary” talk about?
When statistically I should have been dead, I left my dream job and focused on my goal of LIVING. I experienced the true meaning of living legendary while accomplishing some of my greatest goals. I captured the stories in my first book, Learning to Live Legendary. Besides, what’s the fun in living, unless it’s legendary?!
What is your biggest pet peeve?
When people refer to me as being “sick.” I am not sick, I have a disease called metastatic breast cancer (meaning the cancer has spread to other areas of my body, specifically many bones and my liver). The word “sick” implies that I’m contagious; I’m not. It also implies that I will get over this and get better.
How much does your son, Corbin, know about your health?
Corbin was less than a year when I was diagnosed and almost two when I was diagnosed Stage IV, so he has no memory of me before cancer. Corbin doesn’t realize that cancer is a scary word; he only understands that it is part of me, like having brown eyes. He knows that I don’t work because I go to the doctor so often. He has visited the cancer center and saw where I go for my “magic medicine.” When telling him I’d lose my hair (again), I called the chemotherapy “magic medicine.” Chemotherapy is a big word, especially for young children, but I also didn’t want him to think that when he got medicine (children’s Tylenol, for example) that he’d lose his hair. He has expressed his desire for cancer to go away, but his motivation for that is so I can have my port (or my “button” as he calls it) removed. My port is highly visible under my collarbone and there have been occasions where he has accidently bumped it which hurts.
How did your ex help (or not help) with explanations?
After reading about the Aliana Giordano story where the judge gave custody to the father because of Aliana’s Stage IV diagnosis, I became fearful that if my ex-husband knew the decline of my health, he would use it against me to try and obtain full custody of Corbin. So I didn’t tell him about my scan results or changes in treatment. My doctors assured me that if it came down to it, they would testify that I was capable of being a single mom and raising Corbin while in treatment. Thankfully Corbin’s father and I are at a place where I can share basic health information with him as it pertains to Corbin. I try to keep the language the same, so that Corbin isn’t confused hearing different wording regarding my health.
How have you handled his play dates at your home when your immunity is fragile?
Thankfully I have incredibly understanding friends, so play dates are hosted at their homes when my immune system is compromised. I also made sure Corbin knows how important it is to wash hands often. He might be a little overboard with it, but better to be safe than sick.
Has he had play dates with children of others who have similar health issues such as yours?
When I was diagnosed, I knew it was important for me to connect with others going through the same issues. What started as a small dinner group of five young women grew into a group of 15+ local young women who were diagnosed with breast cancer. We meet monthly at a local restaurant that has an area with an arcade. We chose a family friendly location because our families (spouses, children, etc) are such a significant part of our lives. Corbin loves going to these meetings, mostly for the arcade, but he’s found other friends who also have a mom with cancer. He has seen other women bald and often tells them, “My mommy was bald headed too.” To me, it is really important that he knows this is not a secret. I also wanted to make sure he didn’t feel isolated.
Has religion been helpful for your child?
Corbin has a strong faith! The other night a friend was teasing him and said, “I’m the most awesome.” He replied, “No, you’re not! God is!” Then he added, “God and my mom and my dad.” To me, this showed his love of God and realization that truly He is most awesome. It also showed me that, despite a divorce, he loves both of his parents and doesn’t feel a stigma being from a divorced family.
We regularly attend church and read a children’s Bible. We’ve read The Little Boy’s Bible Storybook for Mother’s and Sons which not only shares stories from the Bible in kid-friendly language, but after each story it has a page on “Becoming a Man of God” as well as “A Mother’s Touch” which encourages discussion between the mother and child about sharing her faith.
We are currently reading The Action Bible which has comic book-style artwork and is in chronological order (helpful to me too!)
How have you handled hard-to-answer questions?
At this moment in time, Corbin has not realized that cancer will likely be what kills me. We’ve talked openly about how everyone dies and we don’t know when we will die, so we try to enjoy each day. We talk a lot about Heaven, who we know in Heaven, and how awesome it will be when we are in Heaven. I’ve read Heaven Is For Real and read the kid’s version with Corbin.
What are some of Corbin’s comments on your situation.
Right now, Corbin’s biggest question is when I will go back to work at Parkland. The last year I worked there, he came to Take Your Child to Work and we got to hear stories in the library, see a show in the planetarium, and learn how to change a flat tire in the automotive lab. He also got to push a button on the copier, so it was an awesome day for a 3 year old! I’ve explained that right now I’m not working because I go to the doctor so often and that is my job. While he accepts this answer, he still talks about me returning to Parkland so he can visit again.
Why re-invent the wheel, here are some legendary resources I’ve used and recommend!
How to Talk to Someone with Cancer No explanation needed. Please read it…and talk to me.
Nowhere Hair by Sue Gladner
The little girl in NOWHERE HAIR knows two things: Her mom’s hair is not on her head anymore, so therefore it must be somewhere around the house. After searching the obvious places, the story reveals that her mother, although going through cancer treatment, is still silly, attentive, happy and yes, sometimes very tired and cranky. She learns that she didn’t cause the cancer, can’t catch it, and that Mommy still is very much up for the job of mothering. The book, written in rhyme, explains hats, scarves, wigs, going bald in public, and the idea of being nice to people who may look a little different than you. It ends with the idea that what is inside of us is far more important than how we look on the outside. For any parent or grandparent, NOWHERE HAIR offers a comfortable platform to explain something that is inherently very difficult.
Other great resources are in Jen’s Top Ten*