My bald head was covered with a baseball cap. I was out with no makeup to cover my chemo-grayed complexion as I pushed my baby girl on the swing.
She giggled and squealed, catching the attention of a young man passing by.
“She has a beautiful laugh,” he said. “Are you her grand… parent?” He stumbled over grandparent as we both realized that, not only had he grossly overestimated my age, he had no idea whether I was a man or a woman.
That wasn’t my low point.
The real punch to the gut came a few years later when I was getting my little girl ready for a bath and she casually asked me how old she will be when they cut off her nipples. No tears, no fear, just matter-of-fact assumption that somewhere along the line, her breasts get hacked off.
I felt like my body betrayed me
Cancer didn’t just take my health, it also made off with my breasts, hair, femininity, strength, and a good deal of my confidence. I felt like my body betrayed me. And now, in this hypothetical but not unlikely scenario, my daughter’s body would someday betray her as well.
I helped her into the tub and watched her pretend to be a mermaid. Her movements are fluid and unfettered by notions of shame or inadequacy. Her future is wide open – she can be and do anything, but at this early age, my life is her template.
I knew, sitting there on that bathroom floor, that I needed to wrap my head around this cancer and my body image before my issues became her issues. But first, I had to answer this big question from the little girl in the water.
“Not everyone gets cancer,” I told her. “I hope you don’t, but you might. It will be 34 years before you are the age I was when I got cancer, and that’s lots of time for someone to invent a cure or even a way to prevent it.”
By the time I finished those three sentences, the tub was full of toys and Poseidon was mediating a battle between a narwhal and a walrus. She had moved on and wasn’t listening, but I was stuck in my head trying to define what a healthy body image means, how to make that a reality in my life, how to convey that to my daughter, and how cancer complicates everything.
My body image issues started long before cancer.
At seventeen I was touring Washington D.C. with a group of 200 high school students from around the country. As we walked through the Mall, I overheard two of the other students discussing my appearance. “Judy’s legs are so ugly,” one of the guys said.
“Give her a break, she just got out of the hospital,” the other replied. (No, my health issues did not start with cancer.)
A small part of my brain acknowledged that the second student had jumped to my defense. Thank you, by the way. A much larger part of my brain registered that HE DID NOT DISAGREE with the first student’s assessment of my legs.
In the court of high school social politics, the issue of the ugliness of my legs was raised, and swiftly seconded. That was all I needed. The verdict stuck with me, and I kept my legs covered with tights or long pants for nearly two decades.
Even today, in my mid-forties, each time I leave the house in shorts or a skirt without tights, it is an act of courage that requires a deep breath before stepping through the door.
Why do they have so much impact?
I can’t remember their names. I would not be able to pick them out from a police lineup. I have not seen those boys (men, now) since 1987, and I bear them no ill will. Why do they have so much impact over the way I prepare to leave the house most sunny summer mornings?
It’s not even about them. It’s about me, and my willingness to cling to the derogatory comments and ignore the many more flattering comments I’ve received over the years. A large part of this is about me devaluing my own needs and comfort, and assuming that I owe the world something that I don’t.
After my first mastectomy, I agonized each time before going to the gym.
Sweat made the prosthetic breast slip around, and even fall out of my clothes. Yeah, that was embarrassing. I could stuff my bra with socks and they’d stay a little better, but as I pumped my arms on the treadmill, they’d pile up in the middle of my chest, making me look more Picasso than if I’d just shown up single-breasted.
It was all so inconvenient and awkward, and I contemplated not returning to the gym.
To what extent am I obliged to present myself as a double breasted woman?
Is it offensive to the other people if I show up with one breast?
I struggled with this question. I lost sleep over it. I imagined people who’d had arms or limbs amputated; I wouldn’t expect them to wear a prosthesis if they didn’t want to. Why did I apply a different standard to myself with an amputated breast? And then, I worked up the courage and took a deep breath before stepping through the door single-breasted.
Nobody noticed.
Motivational posters
I noticed a motivational poster hanging in the gym showing a woman drenched in sweat with the words, “If you look good working out, you’re doing it wrong.” Ha! Despite the fact that I know women who do kick ass while looking amazing, there is a great deal of truth to that poster.
Why had I not seen that before?
My body is a work in progress.
I don’t need a perfect body to have a healthy body image. My thoughts on body image are evolving, even as I write this. I am learning to accept and embrace both my vulnerability and my resilience – both integral parts of what it means to be alive.
I don’t lecture my little girl on these issues, although we talk about them as they come up.
I hope that she will see that ideas can evolve as people learn and grow just as our bodies do – that is also part of what it means to be alive.
Mostly, I put on shorts or a skirt with bare legs and go out side to play with her when it’s sunny. Sometimes, I even go through the door without noticing, and I’m out in the sun before I realize that I didn’t have to stop and brave up first.
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 complexities of raising strong, happy, well-adjusted children while going through cancer treatment is a bit mind-boggling, but it can be done. I remember meeting the amazing kids of some of my fellow cancer survivors, and breathing a huge sigh of relief. Once I could see that my cancer did not have to ruin my daughter’s childhood, I was able to relax a bit.
While I was in school, I started a project of surveying parents with cancer, the ups and downs, and what worked for us, with the goal of publishing the results to help others who are juggling these monumental responsibilities. This is the first interview of that series. This is Linneas’s story.
Age at diagnosis: 33
Diagnosis Date: 9/6/2002
Type of Cancer: Breast cancer – DCIS Stage I “with micro invasions”
Stage at Diagnosis: Stage 1
Treatment Plan: Bilateral Modified Radical Mastectomy with Sentinal Node
Biopsy (13 nodes taken- left side); six months Methotrexate and 5FU chemo;
Complete reconstruction with implants; 5 years Tamoxifen; 1 year Arimedex;
Ovaries removed
Current Status: NED
How did you tell your kids about the cancer diagnosis?
I explained to Gunnar that I had mutant genes attacking my boobies and to fight back I was going to have to have surgery. He was assured that I had the best doctors and an awesome team on my side.
How did your kids respond?
He asked what kind of powers I was going to get. We are huge sci-fi and comic book fans and…well… everyone knows the Xmen got their powers because they are mutants.
After seeing my mastectomy without the bandages he stated, “you should tell people you did that skateboarding.”
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?
I was honest with him. I showed him my bandages, my scars and did not pretend that nothing was wrong. I empowered him by making him my “helper guy.” He’d help get my Kleenex box, glass of water- small things that let him help me get better. We shared this experience and the triumph.
Is there anything you wish you’d done differently?
No – I feel like he deserved the truth. He was put into foster care when he was thirteen months old- and was in five home until he was three and a half. When his birth parents decided they didn’t want to raise him after all, my husband and I made him a part of our family. Too many people lied to him, deserted him and gave up on him. I felt explaining a little bit at a time to him and having a part of my healing helped both of us. I told him I was doing everything I could to make sure I would be able to see him graduate, become a fire fighter and dance at his wedding.
How did the impact of cancer change as time passed and your children grew? Did it change?
Gunnar is a huge breast cancer advocate. In second grade he found his teachers mammogram lab referral on the ground (the one with the outline drawings of breasts). He handed it too her and said “this looks important because it has your boobs on it. Are going to be a survivor like my mom?”
The entire household had to get used to my new normal. I can’t lift or carry heavy things like I used to and I tend to tire easily. But life goes on. My son attends every pink relay, race and rally he can telling everyone to “play with your boobs- it might save your life- it saved my moms.” We recently lost our dog to bone cancer. This has now spurred him to advocate canine cancer as well.
Do you have concerns about the long term impact of your cancer on your children?
I think he is worried I may have a re-occurrence and “go away” like so many others did in his early life.
What advice would you give to other moms who are diagnosed with cancer?
Tell the teachers what’s going on. Behaviors at school escalated because he didn’t want to act up at home and upset me. Art therapy is awesome- it lets the kids express themselves and work out things that are confusing to them.
What concerns or fears troubled you the most?
That I would die and not get to show him the world, cool things to do and see, talk to him about life, see him become a firefighter or dance at his wedding. I felt like I was living on borrowed time.
How did you deal with those fears?
We live each day to the fullest. Family vacations, various art projects, parties… we do it all. I helped him get through the state paperwork to work at the fire station down the road from our home. We DO things together.
Have those fears and concerns changed over time?
I’m not afraid of dying as much as I was before.
What was your darkest moment?
Deciding to have my breasts removed.
What was your best moment?
Having my oncologist say that I have a very little chance of re-occurrence since I went so radical with my surgical and chemical decisions, and I have been NED for ten years.
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
When we adopted Gunnar it was decided “there could be only one.” He needed all our attention because he didn’t have any in the first three years of his life.
Adopted children grow in your heart and not your belly. I would take a bullet for that boy. He is my son and it does not matter that I didn’t “make” him.
What did you do to take care of you? How did you splurge on yourself?
Massage, pedi/mani, vacations.
Were you able to get help from friends and family members while you were going through treatment?
I was fortunate enough to have an awesome support group of friends and family. My husband and son were my anchors and kept me grounded and feeling secure.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
I hated asking for help. I still feel weird asking for help with my groceries since I don’t look sick now- “what’s her problem- why can’t she lift her groceries in the car?!”
Accept your limitations and find your strengths. I will never be able to lift 10 pounds…. but I am a whiz on the sewing machine. Offer to help people with things that you can do so when it comes time for you to ask for help- they are more willing to jump in and help. Yes I will help you organize that surprise party for your wife…. but in the Spring I will need help digging up the garden area.
Did you have an online resource that helped you through this experience?
Did cancer/treatment impact your relationship with your spouse/partner?
My sex drive is gone. It takes a whole lot of time and wine to get in the mood. Thankfully my husband is understanding and very very patient.
Do you have any relationship advice for young moms dealing with cancer?
Talk, talk, talk…. tell your spouse how you feel and what is going on.
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?
It doesn’t just go away after five years. The fear, the limitations and the reconstructed boobs that are not as perfect as the original parts are all part of our new normal.
Sometimes when we have a friend going through something gnarly like battling cancer we feel helpless. Prayers and happy thoughts are nice, but believe me, when I was going through chemo I wanted nothing more than someone to come over and help me clean house, make a casserole, take me out for smoothies, give me a massage or just paint my toe nails. She doesn’t need flowers- offer to clean her bathroom or drive her to the pharmacy- now is the time for her to call in all those favors when folks said “hey if you ever need me, let me know”
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?
The little mister had a tendency of pulling on my arm when he was holding my hand while shopping etc. and this just sent shooting pains across my mastectomy chest. Instead of holding my hand I had him hold onto my belt loops.
I made him a cape to wear as my helper guy. All big boys who are good helper guys wear capes. Big boys can also get into their own car seats (“betcha’ can’t get up there all by yourself…wow…look at that… you did it…what a super big guy you are”) “Wow you can carry that gallon of milk to the house all the way from the car?”
I made him a “brave blanket” to sleep with “just in case” he ever got scared. It acts as a cloak of invisibility- scary things can’t get you if you are under it. I told him it’s ok to be scared but that we were going to be ok.
Any additional advice or comments about dealing with cancer while raising children?
If you were a mom before you were diagnosed, you will be a mom after. Cancer cannot take that away from you.
If you aren’t a mom yet, don’t let cancer take that dream. From freezing eggs and IVF to surrogacy and adoption, if there is a will there is a way.
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.
I can’t tell you how many times I’ve seen posts or tweets about breastfeeding over the past year that were not just touting the proven benefits of breast feeding, but taking a pointed, judgy stance on the issue. Statements about breastfeeding related facts might be buried in the article, but the hooks? the one-liners? they’re just polarizing rhetoric. They don’t come right out and state that you are a bad mom if you don’t breastfeed, but the wording draws the reader right to that conclusion. Some of the posts and tweets try to get funny with the issue, but they come across with the same message. They probably don’t even have a clue how their message is coming across.
There was another one today; this is an old one that makes it’s rounds every 4 months or so… “True Story: I don’t have to worry about toxins in breastmilk. And there’s never been a recall on my boobs”
My boobs were recalled while I was breastfeeding. And you can bet I lost a lot of sleep over how many cancer cells my baby ingested from breastfeeding before I knew I had cancer.
Dairy Free Fake Boob
Don’t get me wrong. I am completely in favor of breastfeeding. I believe it is the best source of nutrition and immunity support available to a baby. But there are as many valid reasons for not breastfeeding as there are in favor.
There’s no way I could list them all here – there are too many stories out there, and no way I can know them all. Breast cancer stopped me. How about adoptive mothers? Sometimes the breasts just don’t work correctly, they’re not able to produce. Have you ever wondered why the role of wet-nurse was recognized in cultures all throughout history? The world is full of incorrect ideas about AIDS and how it is spread. We stupidly avoid handshakes and hugs, while we overlook the fact that breastmilk is a proven means of spreading HIV. What would you do if you were a breast feeding mother, and found out you might have been exposed to blood borne pathogens at work? Would you stop breast feeding? It has happened.
Breastfeeding in public? I did it for 11 months. Not one incident. I did make sure that I wasn’t flashing around body parts that I wouldn’t flash around if there wasn’t a baby attached. No one was cruel to me about breast feeding in public. I’ve heard it happens, and that’s really too bad. Any awkwardness I experienced was on my own part, trying to figure out how to get the baby attached with limited visibility, etc… It wasn’t about anyone else. No, the comments came after I was no longer able to breastfeed.
If you’re a new mom, you do what’s right for you and your baby. That’s your business, nobody else’s. If breastfeeding is right for you and your baby – do it! If it’s not, don’t.
Getting used to all of the people (even strangers) who suddenly thought my body and my baby were their business was the biggest adjustment for me through pregnancy, and motherhood. Just draw a bubble around yourself, and imagine all the comments and criticisms just bouncing off that bubble. You see, no one is really an expert. Parenting is on the job training, and the skills required are different for each child. That lady who just came over and said she raised 13 kids? She’s not an expert, either. Not an expert on your baby, anyway.
Love your baby. Wake up every morning, and try again. Everything is going to be ok.
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