Parents with Cancer: “Don’t Be Afraid to Ask for Help.”

Name: Judy Schwartz Haley
Child’s name and age: Genevieve, 3
Location: Seattle, WA
Diagnosis: DCIS, IDC, Paget’s Disease of the Breast, stage 3, ER/PR-, HER2+,  secondary lymphedema
Treatments: mastectomy with lymph node dissection, 8 ½ rounds of dense dose chemo (the half because an allergic reaction truncated one dose), 6 weeks of radiation, reconstruction pending
Current status: N.E.D.
Twitter handle: @coffeejitters
Blog: CoffeeJitters.Net

Judy: My daughter was just 11 months old and still breastfeeding when I was diagnosed. She was the very first thing I thought of, and her well-being was all-consuming throughout treatment. I worried about everything from the immediate concern of weaning her for the mastectomy, to more long term concerns such as whether or not I would be able to be there for her throughout her childhood, and into adulthood.

Parenting with Cancer: What’s the best thing someone did for you or your family to help during cancer?

Judy: Two former colleagues that I hadn’t seen for years heard through the grapevine that I had cancer, and they each contacted me to say they wanted to help. They helped with little things around the house like
washing dishes, one of them rounded up some beautiful clothes for my daughter as she grew, and most significantly, they came over and took care of my little girl when I didn’t have the strength to take care of her by myself. I can’t begin to express how much help that was.

Parenting with Cancer: What’s the best thing someone said to you when you had cancer?

Judy: I received similar advice when I was pregnant and right after the baby was born – that people are going to give you unsolicited advice, and they are going to be very adamant in their opinion that their way is the only right way to deal with this. It’s not. You need to do what’s right for you and your family, and not worry about everyone else’s opinion, no matter how pushy they are.

Parenting with Cancer: What piece of advice would you give a parent who was just diagnosed?

Judy: Same as above. Also, find other parents with cancer and spend as much time with them as you can. I found a group called the Young Survival Coalition and they have been so much help. I credit them with my
sanity. To meet other women balancing parenting with cancer, and even career, and sharing the highs and lows with each other – and to see all those bright and well-adjusted kids they’re raising – makes a big difference. Gilda’s Club is also excellent; their Noogieland helps kids who have cancer in their lives.

They came over and took care of my little girl when I didn’t have the strength to take care of her by myself. I can’t begin to express how much help that was.

Parenting with Cancer: Wig, headscarf or bare-naked head?

Judy: I had a favorite hat I wore most of the time. I had a wig that I hated. I had a number of scarves, but they just didn’t work well for me (and I had one blow off my head on a windy day). I did go out bare headed a
few times, but not often.

Parenting with Cancer: What’s been the hardest part about having cancer/cancer treatments?

Judy: For me, it was fatigue. I’m still having issues with fatigue. And not being able to promise my daughter that I will always be there for her.

Parenting with Cancer: What has helped your daughter through this tough time?

Judy: When she was still crawling, and I was in the worst of treatment, I found that lying down on the floor was the best way to interact with her. She could play and interact with me at her own level, I could still read stories to her, and she could come over and snuggle. We spent a lot of time on the floor together. Now that she’s older, we don’t keep anything from her. She comes with me to most of my doctor and physical therapy appointments, and is quite comfortable interacting with the medical staff. I plan to remain open with her, and answer questions as she brings them up. She’s still pretty young, so I’m sure our coping plans will mature with her.

Parenting with Cancer: What keeps you awake at night?

Judy: Death. Fear of recurrence. This type of cancer has a high rate of recurrence, so every little ache and pain is suspect.

Parenting with Cancer: How do you feel when someone calls you an “inspiration”?

Judy: I don’t feel very inspirational, but I do want to help others with this awful diagnosis. Some of my blog posts are written specifically to help others get through. Some of my most popular blog posts simply outline what a day of chemo and a day of radiation are like. I wrote those because I was so scared before my chemo and radiation started, and a description like that, showing what it’s like, would have eased my mind a great
deal just by eliminating some of the unknown. That doesn’t seem like it rises to the level of inspiration, but if something I wrote can help ease someone’s anxiety or just helps them feel not so alone, well… that would make me happy.

Parenting with Cancer: What’s your favorite place to go for emotional support on your darkest days?

Judy: I go directly to the friends I’ve made at the Young Survival Coalition, or our Facebook group.

We spent a lot of time on the floor together.

Parenting with Cancer: If you could change one thing about your cancer experience (besides the diagnosis), what would it be?

Judy: It is very difficult for me to ask for help. I wish I had asked for help earlier, and more frequently. I still have difficulty asking for help, and since the fatigue is still dogging me, I should do something about that…