Type of Cancer: Breast cancer – Stage IIIC triple negative breast cancer
Stage at Diagnosis: Stage IIIC
Treatment Plan: double mastectomy, 16 rounds of chemo 1 year of avastin
and 25 radiation treatments.
Current Status: Currently NED
How did you tell your kids about the cancer diagnosis?
We talked about the surgery to remove the sick breasts we talked about the medications and how they would cause. me to lose my hair and make me tired and not feel good. We had several books.
How did your kids respond?
Both girls were 3 years old and they did well we had a lot of support.
What are some things you did that worked really well for your family with regards to dealing with the cancer, and treatment, while raising children?
accept help when offered and ask for help when you need it,
Is there anything you wish you’d done differently?
I wish I had been well enough to work through treatment; the financial struggles were awful and still are. I should have asked for help sooner. People want to help and need to know what they can do.
How did the impact of cancer change as time passed, and your children grew? Did it change?
I think some of the effects are just starting to show. The girls worry more than they should have to. They do not really remember how sick I was. Just that I was bald.
Do you have concerns about the long term impact of your cancer on your children?
I worry that as they get older the realities of cancer and the risk of losing ones life will worry them. They were to young to understand that cancer could kill.
What advice would you give to other moms who are diagnosed with cancer?
Be as honest as you can with your children. They will know something is wrong. If you talk to them they will be less fearful. I think the unknown is more frightening than the truth.
What concerns or fears troubled you the most?
The fear of not being here to raise my little girls. I was blessed by adoption and I was terrified I would not be alive to see my babies go to kindergarten. They are now 1st and 2 graders.
How did you deal with those fears?
I strengthened my faith and did everything in my power to get healthy.
Have those fears and concerns changed over time?
I still worry that the cancer will come back. I just take it one day at a time.
What was your darkest moment?
getting the pathology back after my mastectomy.
What was your best moment?
the last day of active treatment
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
I would love another child
What did you do to take care of you? How did you splurge on yourself?
I rested when I needed to and spent time with family and friends
Were you able to get help from friends and family members while you were going through treatment?
yes. I was lucky
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
It was difficult and still is. But I have found that many want to help and do not know how to offer. They are often grateful to be able to do something for you.
Did you have an online resource that helped you through this experience?
Young Survival Coalition
Did cancer/treatment impact your relationship with your spouse/partner?
Yes very negatively. In the long run we will be getting a divorce
What is something you wish your friends and family members understood about your cancer and its impact on your life? What would you tell the friends and family members of other mom’s diagnosed with cancer? What would you want them to know about what she’s about to go through, and how best they can support her?
That cancer does not end when treatment ends; it forever changes you.
Were there any cancer-related activities or events in which you participated that you think were especially helpful to you or members of your family
What are some solutions you found to practical problems of combining cancer treatment with raising young children?
I was lucky my parents live close (5 minutes) so they kept my girls the night before treatment and the night after. They also kept them for the 4-6 week stretch after my mastectomy so I would not lift them. I was close enough to see them anytime and was able to let my body heal.
When I was diagnosed with breast cancer in 2010, one of the first things I did was head straight to the book store. I was looking for a book that would tell me how to juggle cancer and parenting my infant daughter. I didn’t find anything that provided helpful information or practical steps I could take to help ensure that my daughter still gets a vibrant childhood even when I have trouble getting out of bed.
As a writer, one recurring piece advice I keep hearing is write the book you want to read. While not a book, this blog series on cancer and parenting is a step in that direction.
If you found this site because you are in that unenviable position of having both cancer and young children, let me just say that the road ahead of you is difficult, but it is also full of love and joy. The thing I needed to hear most at this point in my journey was that my child can have a wonderful childhood and grow into a compassionate and strong adult despite my cancer. Your child can too.
This page is a work in progress; as each interview and story is posted, this page will be updated with the new post. I’ve got one post per week lined up for several months. Check back often to read more stories.
Did you have cancer while raising your children? Did you have children, or adopt, after your cancer treatment?
Sharing your story can be cathartic, it can also help other parents who are newly diagnosed, and scared, and overwhelmed.
The survey is long, but it provides significant leeway to share your story the way you want it told.
The first thing I thought when I was diagnosed with breast cancer was what’s going to happen to my baby? I’m not alone in that thought, I’ve discussed the topic at length with my friends who are also juggling child rearing with cancer treatment.
And it does impact the kids, but there are ways to help our kids cope with a parent’s cancer.
Interview with a Social Worker
Michelle Massey runs the Camp Sparkle and Small Talk programs at Gilda’s Club in Seattle. [Updated to note that the former Gilda’s Club in Seattle is now operating independently- although maintaining the same mission – and goes by the name Cancer Pathways.] She is a Licensed Clinical Social Worker and a Board Certified Oncology Social Worker. She got her start at Children’s Hospital working with kids with cancer, where she started to notice that the siblings needed some attention, too. Now her work focuses on the children of cancer patients.
We sat down at her kitchen table to discuss how kids are impacted by their parent’s cancer, and what we can do to help. She was very clear in making the point that if a parent has cancer, the kids are affected. They might not show it. They might be perfect little angels because they don’t want to be a burden, but that doesn’t mean that they are not affected.
Kids are by nature ego-centric.
There is nothing wrong with this, it is part of our developmental process, and hopefully, we grow out of that perspective. But it’s important to remember the eco-centric perspective when working with children who are dealing with their parent’s cancer. When they think the world revolves around them, then they naturally think they have an impact on everything that happens. That means when a parent gets cancer, they think it has something to do with them. It’s the same reason kids think it’s their fault if their parent’s get a divorce.
The ego-centric perspective also means that the child’s biggest concern is “what is going to happen to me?” They are concerned about the well-being of their parent, but even more so, they want to know that whatever happens, someone is going to know that they like their peanut butter and jelly sandwich cut into triangles, and which songs to sing as they tuck them in at night. Fear of abandonment is a normal reaction to this situation.
It is important to understand that a child’s anxiety around a parent’s cancer is an appropriate reaction, and not a sign of mental illness. Counseling and group therapy sessions can help kids develop the tools they need to weather the ups and downs of their parent’s cancer treatment. Additionally, this is not likely to be the last challenge in the child’s life, so the tools learned in counseling will be of lifelong benefit.
Group activities that involve other kids whose parents have cancer is also beneficial in that it provides an environment where the kids can feel normal. They don’t have to feel weird because everyone has cancer in their home.
I asked Michelle what specific advice she would give to parents who have cancer, and these were her suggestions:
How to help kids cope when a parent has cancer
Make sure your kids have an outlet for their feelings, even the “ugly” feelings – a safe place where they can talk about what’s going through their head without being shut down. (Counseling and group therapy are great for this)
If you do get a counseling for your kids, trust and confidentiality are of the utmost importance. The child needs to be able to say those things they’re afraid might hurt their parent’s feelings.
Allow them to feel their emotions rather than brushing them away.
Don’t try to fix everything. You can’t fix their emotions.
Ask them specifically what they are afraid of, the fear may take on different nuances at different times, and that will change the conversation.
The Camp Sparkle and Small Talk programs mentioned above are at Gilda’s Club Seattle. There are Gilda’s Clubs around the country, and while the specific offerings at each location may vary, the programs are available to cancer patients and their family members at no charge.
Michelle also works with young women with breast cancer, formerly serving as a meeting facilitator for the Young Survival Coalition.
On the corner of Broadway and Union, on Seattle’s Capitol Hill, sits an old brick building with a red door, and four stately white columns in front. Magic happens in this building.
When Gilda Radner was diagnosed with cancer, she learned first hand how lonely cancer can be. Gilda’s Club was created so no one else would have to go through the cancer experience alone.
Gilda’s Club is not just for the cancer patient, but their family members and close friends as well. A cancer diagnosis impacts the whole family. We all need a place where we can be ourselves, and it feels good to have a place where we feel normal, where others understand what we are going through. Gilda’s Club does this with support groups, lectures, and other helpful events for people with cancer and their loved ones.
Camp Sparkle
Camp Sparkle is one of the ways that Gilda’s Club helps the children of cancer patients.
Sometimes, the world turns upside down when Mom or Dad is diagnosed with cancer, or even dies from cancer. This is complicated when adults reflexively avoid conversations about cancer, life and death, or deep issues are distilled into platitudes that are more dismissive than helpful.
Camp Sparkle provides a safe environment for kids to talk about cancer, and helps provide kids with a toolbox of skills to name and discuss their feelings and to deal with this and other challenges life will throw at them.
And Camp Sparkle is FUN!
My girl turned 5 a few months ago, so this year she was old enough to go to Camp Sparkle. She had so much fun. She came home with piles of artwork each day of the week, and at the end of the week she brought home a journal. She went on a field trip every day. She made new friends, learned about compassion, and respect, and self care. And I am so impressed with the questions she’s been asking since camp. Thoughtful questions about things it never occurred to me to bring up with her.
She’s a happy camper, and I’m so glad she got to go to Camp Sparkle.
Gilda’s Club has clubhouses across the country, and Camp Sparkle is free for the children of all Gilda’s Club members, ages 5-18.
My Cancer Story is a collection of my blog posts and articles about my cancer experience over the years. I decided to pull them all together into one place to make them easy to find.
This turned out to be a much bigger projected than I expected. I’ve cataloged more than thirty here so far, and there are many more to add.
This is a work in progress. I will continue adding the posts already completed as well as the new posts to come, so check back from time to time. Tags are coming soon to allow for searching by topic.
It has been an eye opening exercise to go back through these posts and see how my attitude, perspective, writing style, and my life in general have all evolved over time.
My hope is that these pieces will provide someone with cancer some measure of hope, comfort, and useful information to help them along this difficult road. Even if you don’t have cancer, you just might find this story interesting.
We hold on to each other, we revel in memories, and we pop a bottle of champagne to toast your memory while flipping cancer the bird. We embrace those who are still with us, and carry forward the memories of those who have gone before us.
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