Judy is a writer and photographer, and she shares stories of parenting, living with cancer, and embracing every moment of life on her blog, CoffeeJitters.Net. She lives in Seattle with her husband and 5-year-old daughter, whom they just launched into the amazing world that is Kindergarten.
Judy Schwartz Haley
HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?
ER/PR-, HER2+, with Paget Disease of the breast
HOW DID YOU FIND OUT?
I was having trouble breastfeeding my baby. I was diagnosed with mastitis but it wouldn’t clear up, so they sent me for a mammogram with ultrasound. They had the machine in their office, but they referred me to the Seattle Cancer Care Alliance for that diagnostic scan. I had to wait 4 days for that scan, and since they referred me to the cancer center, I knew there was a pretty good chance I had cancer. During the ultrasound and biopsy, my husband asked what else it could be, and the doctor said, “well, that’s just it, um…” I pretty much knew right then. When my doctor called the next morning to say, “I’m sorry it’s cancer.” I was not surprised.
TELL US YOUR REACTION.
My emotional reaction came in waves. When the doctor called with the diagnosis, I was totally cool and pulled together. It was those moments that I was wide awake at 3am that were the worst. And feeding my baby. I couldn’t figure out if it was still ok to breast feed or not. I called several doctors and finally got a call back saying cancer isn’t spread that way. But then I was wondering about the quality of the milk that is being created by this cancer-infested breast as well. But my baby, who was on solid food, decided she wanted to eat nothing but breast milk. She must have been picking up on all the anxiety, and looking for that comfort. Then I met with the breast surgeon and she said I definitely need to wean completely before the mastectomy, so it was a race to get her weaned. My baby dropped from 19 pounds to 17 pounds. In those early weeks after the diagnosis, this was my primary source of anxiety. I couldn’t allow myself to think beyond what was right in front of me. Another thing I did right after diagnosis was run to a bookstore to find a book that would tell me how to get through cancer without ruining my daughter’s life. I didn’t find one..
WHAT WAS YOUR TREATMENT PLAN?
I had a mastectomy, then my gall bladder acted up so I had to have that removed the next month and then wait another month after that to start chemo. Chemo was A/C and Taxol, but I reacted to Taxol, so then after a 6 week delay waiting for insurance approval, I was switched to Abraxane to complete treatment. Followed by a year of Herceptin and 6 weeks of radiation.
DIEP reconstruction in 2013
HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?
I put on weight with the chemo and have not been able to drop it. I have been dealing with extreme fatigue since then. I recently found out my thyroid is not functioning well and have started thyroid replacement therapy. No idea if this was cause by treatment, but hopefully this will help address the fatigue. I’m having trouble with lymphedema, and any little paper cut, bug bite, or hangnail quickly progresses to cellulitis, so I find myself hospitalized 3 or 4 times a year for something as ridiculous as a hangnail.
HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING MORE?
Shortly after diagnosis, I was connected with the Young Survival Coalition (YSC) which helps to empower young women with breast cancer and provide them with information and a network of peers. These women were amazing. That summer, at a picnic, I met some of their amazing and compassionate children, and it finally clicked for me that my cancer does not have to ruin my daughter’s childhood. At that point, I was able to relax a little and focus more on my own well-being. That realization, and those women, inspired me to volunteer with the organization. Now, I am a Washington State Leader, and Seattle F2F (face to face) Coordinator for YSC. I also write articles and blog posts about living well with cancer and parenting with cancer that I hope will be helpful and encouraging to other women in this situation. I have a series running on my blog called “How to Juggle Cancer and Parenting” and it includes interviews with many other survivors with children.
WHAT WERE YOUR BIGGEST STRUGGLES AND HOW DID YOU MANAGE THOSE?
My biggest struggle with cancer was financial. At the time of my diagnosis, my husband and I were both full-time college students, living entirely on student loans (and occasionally had no choice but to use credit cards to survive), and we had a baby. Since then, we have both graduated (and let me tell you,completing my degree with chemo-brain was no picnic), my husband has a job with benefits, and I make a little money writing articles (and I’m looking for work), but we are so deep in debt it’s difficult to see a way out of it.
Another big concern was the well-being of my child. After years of infertility and a difficult pregnancy, this is my miracle baby. There was a point where I didn’t know if I would get to see her go to Kindergarten. Well, she’s in Kindergarten now, and she’s thriving. Yes, our cancer impacts our children’s lives, but they can still thrive.
WHAT’S YOUR BEST PRESCRIPTION?
I try to avoid regrets, especially regarding cancer and treatment, but there is one thing I wish I had done differently. I have a couple of good photos of myself alone, while bald, but I have only a couple out-of-focus pictures of myself with my daughter while I was bald, and none as a family, none with my husband. I didn’t really want the photos then, I didn’t like how I looked and didn’t want a permanent record of that, but now I’m glad I have those photos of myself from when I was bald. I wish I had photos of myself with my loved ones during that time. We came through this together. I wish I had something tangible, like the photo, that I could show my daughter, that emphasized the togetherness we felt while we were going through this experience. My advice: have some photos taken with your loved ones while you are bald.
Read more from Judy at CoffeeJitters
Personal photo courtesy of Judy Schwartz Haley