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?
Type of Cancer: Breast cancer – DCIS with microinvasion
Stage at Diagnosis: Stage 1
Treatment Plan: Bilateral mastectomy
Current Status: cancer-free (I pray)!
How did you tell your kids about the cancer diagnosis?
Shared very limited details but just told them that mommy would have a surgery to get rid of some disease growing inside my body. My baby was only 3 months old.
How did your kids respond?
They didn’t seem to care but were VERY good at giving gentle hugs after surgery.
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?
Lots of outside support.
Is there anything you wish you’d done differently?
Nope
How did the impact of cancer change as time passed, and your children grew? Did it change?
they don’t really know much still.
Do you have concerns about the long term impact of your cancer on your children?
Yes. I’m most concerned for my daughter and how she’ll associate her own body when looking at mine. She’ll understand when she’s older
What advice would you give to other moms who are diagnosed with cancer?
Take time, breathe, and find ways to smile and laugh.
What concerns or fears troubled you the most?
recurrence
How did you deal with those fears?
Deal every day. It’s a very scary world.
Have those fears and concerns changed over time?
No
What was your darkest moment?
No super dark moments per se.
What was your best moment?
Post surgery to find out that no nodes were involved.
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
No more children were planned but had nothing to do with cancer. We wanted 3 and we have them. I’m grateful.
What did you do to take care of you? How did you splurge on yourself?
I’m not sure I have.
Were you able to get help from friends and family members while you were going through treatment?
Yes. A lot. I am surrounded by amazing people.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
People will offer. When they do, say yes. And be sure to pay it forward.
Did you have an online resource that helped you through this experience?
YSC! While I’m not very active in the group, reading the site and the FB page is a huge, huge help.
Did cancer/treatment impact your relationship with your spouse/partner?
Not in a huge way.
Do you have any relationship advice for young moms dealing with cancer?
Laugh. Remember to connect with each other. Laugh some more.
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?
Recurrence is a real fear and something that comes up a lot. Help to keep me smiling and laughing and I’ll do the same for 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?
No.. not really. I do Race for the Cure each year. It’s taken on a new meaning.
Type of Cancer: Breast cancer – Right Breast Metaplastic
Carcinoma with transitions to spindle cells.
stage at diagnosis: Stage 1
Treatment Plan: Lumpectomy, chemotherapy and radiation
Current Status: Cancer Free!!!!
How did you tell your kids about the cancer diagnosis?
Because my husband’s grandmother of cancer had died just 2 months prior, and my son had a difficult time with her death, we were very reluctant to tell him I had ‘cancer’ at first. We initially told him that Mommy had some very bad germs in her ‘chi chi’ and (because originally I was told I needed to have a mastectomy) we told him that the doctor was going to have to remove my ‘chi chi’ to get rid of the germs. That changed and I had lumpectomy instead.
We told him that Mommy needed to take some strong medicine that was going to make her very sick and tired, but through it all, no matter what, I still loved him. I was going to need lots of help taking care of him, and that I needed him to help take care of me sometimes. We also shared a book with him called ‘Mommy has cancer’.
How did your kids respond?
My son is very empathetic. He was very in tune with my emotions and could sense when I was sad or sick and would hug and love on me. He did at first check inside of my shirt to see if my breasts were still there. We tried to not tell him ever that mommy might die, so as not to worry him about that. But, we did want him to understand the seriousness and that I would be very sick.
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?
My parents went through a divorce at the time of my treatment, so my mother came to live with me. It was wonderful to have another adult in the house to help with the burdens of keeping house and taking care of a toddler. I realize not everyone has this option, but essentially, I think we need to ask for help and allow people to help. We have to be a little selfish and take care of ourselves. If we don’t take care of our own health and mental well being, we are not able to be there wholly for our children. I did one thing that I am so glad I did. I had photographs taken of my son kissing my bald head. It is a physical reminder for us all to cherish every day. I also feel that it was a lesson to my son (and myself) that we are not our appearances. We shouldn’t judge people by the way they look because you don’t know what they are enduring.
Is there anything you wish you’d done differently?
I have no regrets about my journey with cancer, ultimately it has been a tremendous blessing in my life. It taught me a lifetime of lessons of faith, strength and love.
How did the impact of cancer change as time passed, and your children grew? Did it change?
I am well now, and have been blessed with another child. However, my son who was 3 when I was diagnosed is now 10. He does ask questions and seems concerned whenever I go to the doctor or have routine scans or mammograms. I try not to worry him, but ask him to pray for me. Cancer allowed faith into our family. God had not been a part of our daily lives, in fact I avoided the mention of ‘God’ at all cost before cancer. I didn’t want my son to have such ‘fairy tales’ shoved down his throat. But, cancer was a pathway to Christ for our family. It has changed the way I parent, and the wife that I am. And, has allowed us all to examine the purpose in our lives.
Do you have concerns about the long term impact of your cancer on your children?
Yes. I guess I feel SLIGHTLY less concerned in that I have male children. I realize they do have an increased risk for breast cancer, but I also worry about their overall cancer risk.
What advice would you give to other moms who are diagnosed with cancer?
Have faith, take care of yourself, allow others to help you. Let go of the idea of the perfect house and perfect parenting. You can only be a parent if you are alive to do it…so take care of your health. Find people you trust, whether through churches or schools whom you trust to help you take care of your children when you aren’t well enough. Be honest with your children, but try not to burden them with adult worries.
What concerns or fears troubled you the most?
At first, I was so worried about what my son would do without a mother, and that I would financially devastate my family. I was worried that my husband would have problems with my new body.
How did you deal with those fears?
Ultimately, I found a faith that allowed me to lay those problems at the feet of Jesus. It allowed me freedom from many of those worries and a focus on getting well. My husband was very supportive and my worries became unfounded. Friends blessed me by having benefits in my honor to help with the financial burdens.
Have those fears and concerns changed over time?
Yes. I now have another baby. I worry that something will happen to my husband and that I will fall ill and my children will be left without parents.
What was your darkest moment?
My darkest moment was the day I was diagnosed. I had suffered a miscarriage 2 1/2 months prior. My primary focus was having another child. When the surgeon told me I had cancer and I asked her if I would ever have another baby, she hesitated and said, ‘not for a very long time.’ I asked her if I was going to die, she told me not if we treated this very quickly and aggressively.
That day, my friends came over. I felt like I was numb, and that the world was happening around me while I was stuck in a nightmare. People were crying and cleaning my house around me. I felt like I was at my own wake.
What was your best moment?
Easy…accepting the Lord, Jesus Christ as my savior. Calling on him in my most desperate time to heal me, to take my cancer, my fear and my anxiety. And he responded with an inexplicable peace.
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
No one highly recommended that I have more children, although my cancer was hormone negative. I did look into freezing eggs before I started treatment, but ultimately decided we couldn’t afford it. I did look into some clinical studies and found that taking Zoladex, even though I was triple negative, was found to preserve ovarian function in most women under 40. So, after being refused the zoladex by my oncologist, I sought the help of my gynecologist who did give me the zoladex treatments. It put me into menopause for the time of my treatment. 2 months after stopping the Zoladex, my cycles returned. And after about 3 years, my husband and I stopped trying to avoid pregnancy. I became pregnant 4 years after my diagnosis.
What did you do to take care of you? How did you splurge on yourself?
Baths and naps. I bought myself scarfs and wigs (although rarely wore them) and also, relatives sent me money to do what I wanted with them, so I treated myself to some comfortable pajamas.
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
You just have to suck up your pride, and take people up on their offers to help. People feel out of control quite often, but want to do something. I usually just asked people to pray for me, or to just visit with me.
Did you have an online resource that helped you through this experience?
Did cancer/treatment impact your relationship with your spouse/partner?
Yes, it taught us to prioritize our lives. It made us closer and tighter and stronger and put us on the same page spiritually. I felt very guilty at the beginning. I kept apologizing to my husband that he didn’t sign up for the one boobed bald headed wife. But, he loves me and that shone through.
Do you have any relationship advice for young moms dealing with cancer?
Be honest about your feelings, and allow your spouse to be honest about theirs. This is difficult for all of us and they are going through it too. I often felt like it was harder for my husband, because at least I felt like I was doing something about it. He just had to stand by…he felt that he had to hide his emotions and fear and be the rock for me.
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?
I wish the people would not send me information that suggests that I might have caused my cancer by some behavior. I wish that people would understand that stress causes a breeding ground for cancer and that I don’t want to deal with other people’s drama. I would tell other friends and family to help…out of love, not control, to not tell the patient that it’s all in their mind. I would tell them to pray for and with the person suffering and remind them how much they are loved. I would tell them that no matter how many people there are supporting them, the patient often feels alone, and that no one truly understands what they are going through. Allow them that feeling, but remind them that you are there for them if they need to talk. Allow them to complain. It sucks, it’s sickening, it’s painful at times, its terrifying. Don’t try to rob them of their right to their fears and pain. Don’t tell them about everyone you know who died of cancer. Don’t pretend to know everything about their cancer.
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?
Reach to recovery was helpful initially, but really just building one on one relationships with other YOUNG survivors and really making connections with other women with same concerns. I began speaking at events, such as Making Strides Against Breast Cancer also sharing at churches and with other people in waiting rooms etc.
What are some solutions you found to practical problems of combining cancer treatment with raising young children?
I was blessed with an incredible support system. The problems I had were more my own. I had to learn to accept ‘good enough’. I had to learn to sometimes put myself first, and allow my husband to just be a father the way he wanted to…to be the primary care taker. It was also very important to me that I did not promise my son that I would not die, as that was a possibility. What I wanted him to know was that I would love him no matter what. So, I started telling him that ‘I love you all the time.’ I told him I loved him no matter where I was, or where he was, no matter what the time of day, whether we were young or old, or whether he could see me or not.
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.
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