How did you tell your kids about the cancer diagnosis?
We used the local Gilda’s club
How did your kids respond?
It was a very positive experience
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 kept their routine as normal as possible
Did not give them too much information
Let them asked questions if they wanted to know more
Kept very open lines of communication
Used a lot of professional help- Gilda’s club and local help from my hospital with this
Is there anything you wish you’d done differently?
No
Do you have concerns about the long term impact of your cancer on your children?
Yes
What advice would you give to other moms who are diagnosed with cancer?
Don’t give your children too much info
Cancer is very scary for children.
Children process info VERY different than adults. Let them ask questions (if they have any) and follow their lead
What concerns or fears troubled you the most?
How did my diagnosis and treatment impact my children
How did you deal with those fears?
Time will tell
Have those fears and concerns changed over time?
Yes, As more time passes-I think about this less
What was your darkest moment?
Mental breakdown and depression 18 months after diagnosis
What was your best moment?
Every day (including today)
I love my life and my family and still think I am a very lucky person!!!
I am blessed
What did you do to take care of you? How did you splurge on yourself?
My husband put me first. Everything just fell into place: Whatever I needed – I got – whenever I needed it.
Were you able to get help from friends and family members while you were going through treatment?
Yes- I have an amazing group of friends
You know the statement-it takes a village. I have a village.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
Very difficult. It is very humbling. Especially when you are used to doing and not needing.
Did cancer/treatment impact your relationship with your spouse/partner?
Yes, Not in a negative way. I fully understand how much my husband loves me. As I said- I am a very lucky person
Do you have any relationship advice for young moms dealing with cancer?
Be honest.
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?
Just because you look ok on the outside- it doesn’t mean you are ok on the inside.
Cancer is not like strep. You are not better in 5 days. It can take awhile (even years) until you are ok.
Type of Cancer: Breast cancer – poorly differentiated invasive ductile
carcinoma. stage I category III
Stage at Diagnosis: Stage 1
Treatment Plan: Bilateral mastectomy with reconstruction, Chemo 20
weeks followed by 42 add’l weeks with herceptin every 3 weeks
How did you tell your kids about the cancer diagnosis?
Explained that we have millions of cells in our bodies and that sometimes some of them go bad. When they stick together they create a tumor. That tumor is cancer. Docs don’t know how we get cancer but they know how to get rid of it. Told them it’s no one’s fault and that it wasn’t contagious. Asked them what questions they had, and we’ve been talking regularly (not scheduled).
How did your kids respond?
11 year old twins. Son had several spot on questions (How do you know it’s even there?) and my daughter shut down. Couldn’t stop crying but wouldn’t talk. I told her that when she wanted to ask anything that I’d answer as best as I could. I told her I loved her. By the end of the day she was her normal self.
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’m divorced but asked my ex to be there to tell the kids. That was a big support mechanism in the sense of “we’re fighting this as a family.” Humor works really well with my kids. It opens them up. Eg, at dinner, daughter asks, “Dad, can I have another chicken breast?” shortly after my surgery. Then she turned to me and said, “Sorry, mom.” And I said, “That’s ok. I’ll have two!” Laughter all around.
Do you have concerns about the long term impact of your cancer on your children?
I do. This is a lot for them to withstand, but if I make it through, which I fully intend, they will have matured in a hard but positive way.
What advice would you give to other parents who are diagnosed with cancer?
Be as straight as you can to you kids in the conversation. Tell them what you know them capable of handling. Line up support and tell them you all have backup whenever you need it. Make sure their lives go on as normally as possible through treatment. Don’t let them skip ballet or a music lesson. And tell them as much as they can stand to hear it that you love them.
What concerns or fears troubled you the most?
How my kids would react. And chemo without a partner to help me, and the need to protect my kids from the hard stuff.
How did you deal with those fears?
I continue to see a therapist weekly. Hugely helpful.
Have those fears and concerns changed over time?
Still working on it
What was your darkest moment?
Haven’t had it yet. If I did, it must not have been that bad.
Did you have an online resource that helped you through this experience?
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.
One of the frustrations I’ve had to deal with because of this breast cancer is my lopsidedness. Getting dressed in the morning takes quite a bit more thought and planning than ever before. I wasn’t small breasted to start with, but thanks to my mastectomy I have a bouncy D-Cup that swings a little lower since breastfeeding, and a rock hard, absurdly high, almost A-cup.
To make matters a little more interesting, the mastectomy side is augmented by a saline implant called an expander. I periodically go in for expansions, which means they inject more saline into the implant. This is in preparation for reconstruction after I complete the cancer treatment, but the expansions have to be complete before I start radiation. As a result, the size and shape of my mastectomy side “breast” changes to frequently. I’ll wait till the size and shape stabilizes to invest in a prosthesis, in the meantime I’m stuffing my bra with socks.
Yeah, you read that right. I’m stuffing my bra with socks. How very seventh grade. But at least in junior high they were both the same size, I wasn’t trying to make different sizes match each other. No matter how many socks I stuff into this bra, they will never bounce quite like my real breast.
The Stuffed Bra that Wont Stay Stuffed
These socks were made for wandering, and they do like to tour my chest wall as I’m moving about. They really like to get around while I’m running on the treadmill. Before I know it, they’ve worked their way under my armpit and each pump of my arm jams them a little further back under my arm, or even more frequently, they pile up right in the center of my chest. Excuse me a moment while I reach in and readjust my “girls” while running, and hopefully not stumbling, on the treadmill. Graceful, no? I find myself pushing my socks back into place as I walk around town. The boob is gone, it doesn’t feel like a boob anymore, so it’s easy to forget that while they’re just socks to me, to the average pedestrian it looks like I’m groping and playing with my boobs and I try to corral them back into place.
And yoga? the socks are likely to wind up just about anywhere, but I’ve mastered the art of readjustment during downward dog. People look at each other less during yoga anyways.
It’s not just while I’m exercising that the socks become an issue. A few weeks ago we sailed around Seattle on a gorgeous schooner. I disembarked the ship and my husband handed my 1 year old daughter down to me. She was a little wobbly on her feet as I set her down and knelt next to her on the deck. To catch her balance, she reached up and grabbed my shirt, and managed to grab my bra in the same handful. Out tumbled my sports socks in full sight of everyone looking down from the ship.
So if you see me out and about with a big lump under my arm, or up by my neck, or down by my abdomen, its just an errant sock trying to make a break for it. No need for concern. You might even be treated to a glimpse of my readjustment dance as I try to surreptitiously work it back into place.
I started the morning posing for topless photos in the harsh clinical light of the plastic surgeon’s office. I hadn’t given much thought to what the ambiance might be like should I ever pose topless, but doctors in lab coats with a changing curtain for a backdrop never crossed my mind. If you told me a year ago I’d be in a plastic surgeon’s office fondling samples of silicon and saline breast implants I would have laughed at you. While there are a few parts of my body that could use a tune-up, my breast size was not exactly inadequate.
My belly size is also not inadequate. The camera and I had a bit of a disagreement as to whether or not I sucked in my belly for the exposure. I swear I sucked in my belly, but the camera won that round, and round belly is permanently preserved in the before shots in my medical records.
As it turns out, that’s not all bad. I happen to be a good candidate for a DIEP procedure, which means instead of using artificial implants like saline or silicon, the reconstruction involves my belly fat up to rebuild my breasts. Double Bonus Points!!
My big takeaway for today is that there is life after breast cancer – and it comes with perky tatas!
