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 am in possession of most of the old photographs and do-dads from our family history, and on occasion, I rummage through those items and take a stab at getting some of them scanned so we have a digital record that can be shared around the country. Most of the pictures I rummage through are multiple copies of old school photos, but every once in a while, I find something interesting.
The pen doesn’t work, it’s 44 years old. Apparently, this is the pen that the best man presented to my dad, the groom, “for use in signing his life away.” This cracks me up. I wonder if he had any idea that decades later we would still be in possession of this pen and the card to which it was taped.
The card says:
Compliments of the Lee Museum of Warped Art and Hysterical Do-Dads.
Left on ancient dining able, believed o be the “Official Pen” use in ancient wedding ceremony. Given traditionally (for the first time) to the Groom fo use in signing way his life by the Honorable Best Man. Hmph!
And here’s the best man, Pete Lee, with my Dad. Dad is on the right.
This is one of my favorite photos from my parents wedding – Dad looking at his ring. I wonder what he was thinking.
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Disclosure: This blog did not receive compensation and is not responsible for prize fulfillment. This post may contain affiliate links. By participating in the Sweepstakes, each entrant unconditionally accepts and agrees to comply with and abide by these rules and the decisions of Failing Perfect (“Sponsor”), which shall be final and binding in all respects. Failing Perfect is responsible for the collection, submission or processing of Entries and the overall administration of the giveaway. This promotion is in no way sponsored, endorsed or administered by, or associated with, Facebook, Pinterest, Twitter, Instagram, andor any other social media. Please contact michelle@failingperfect.com with any questions, comments or problems related to the Sweepstakes.
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The dress is on backwards, her (my) shoes are on the wrong feet, she’s holding her camera backwards, her hair is a mess, and there’s a dog pinned under the door. Also, the lighting is off, and it’s not well focused or composed. There is not a thing I would change about this picture. This snapshot tells a story about our life. It’s messy, and lively, and it’s spontaneous. It’s beautiful, and those little imperfections are part of what makes it… well… perfect.
I love this picture.
Beauty is imperfection
I have a mint green blanket that my grandmother knit for my baby. My grandmother was in her late 90s, had arthritis in her hands, and she was close to blind, but she was determined to knit this blanket for my daughter. The blanket was probably knit, in it’s entirety, several times with the number of times mistakes were caught, ripped out, and re-knitted, and yet the finished product is still full of dropped stitches. Those holes make the blanket even more beautiful to me. If the blanket was completed flawlessly, it would be easy to overlook the effort and determination and love that went into making that blanket. That’s not to say that a perfectly finished blanket made by someone’s grandma isn’t beautiful, but for this blanket, the flaw carries the story.
I struggle with perfectionism, and sometimes it’s paralyzing. I get stalled on a project because I can’t see a perfect outcome with my abilities, or with my resources. Of course, we want to do our best, but then get busy living. Those little imperfections are sometimes the best, most memorable and most endearing parts.
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