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.
I had one job when I walked out onto the field during halftime at the Seahawks game Sunday: walk in a straight line, wave, and don’t trip.
Oh, and don’t pee your pants.
Why was I out on that field? I had the opportunity to join several other survivors in representing the thousands of women who have battled breast cancer in the Seattle area.
Of course, moments like this always seem to involve a lot of waiting…
And, a lot (A LOT) of walking.
Just to keep things interesting, I stepped on a piece of broken glass two days before the game. I drove myself and the little one to the ER and ended up getting seven stitches -and then all that walking in the stadium, and across the field, took place wearing this gorgeous bootie.
Don’t worry about the foot, it will be fine.
When I walked out on the field, I wasn’t worried about my foot at all. I had other things on my mind.
As we lined up under the goal post in the end zone, I suddenly realized that I had to pee. Fortunately, we were encouraged to dance. So that was me doing the potty dance to Katy Perry’s “Roar” as we walked across the field from one end zone to the next. Whatever works, right?
I also managed to get on and off the field without actually tripping, but at the first 20 yard line, I turned to look at my friend Pam who was walking behind me, and the guy in front of me stopped – so I walked right into him. I’m pretty reliable on these things.
I’m not the world’s biggest football fan, but I do love the celebratory feel of sporting events.
And the views…
But my favorite part of sporting events is the people watching. These were the people sitting right in front of me.
I learned the hard way that the financial implications of cancer extend well beyond just the cost of medical care. It’s a far too frequent story where jobs are lost, or the hours worked drop below the minimum to maintain health insurance – or pay the rent.
The cost of babysitters alone could bankrupt a family, and then there’s all those extra meals eaten out, and meal delivery services on speed dial, because mama just didn’t have the strength to prepare dinner. Again.
And don’t even ask about the condition of the house. At a time when cleanliness is more important than ever, the strength to tackle that job is tied up in continuing the cycle of breath entering and exiting the body in a timely manner. It’s really hard to scrub toilets while you’re going through chemo.
Paying it forward
Debbie Cantwell was blessed with a strong support system while she was going through her own breast cancer battle, so she decided to pay it forward. From her kitchen table, and armed with determination and inspiration, Debbie started a non-profit organization, the Pink Daisy Project, to help other young women with breast cancer who were struggling and didn’t have the same kind of strong support system to call on.
This is a very small scale non-profit, and the grants to these young women with breast cancer are quite small as well, a few hundred dollars in gift cards or services. Just enough to turn the tide a bit, to get the momentum going again, a lift, a kindness, hope.
How the Pink Daisy Project helped me
The help I received from the Pink Daisy Project while I was going through treatment did all those things for me. I could buy diapers for my baby, and put gas in the car, but it did something more than that, too. By lifting one of my burdens, the gift lifted my spirits. I felt less weighed down. It put a little bit of bounce in my step, my energy level actually improved. Kindness has huge implications in the world.
Every once in a while, I take advantage of the fact that my blog has an audience to tell people about the good work that the Pink Daisy Project is doing. I want to shout it from the rooftops.
But, at a moment like this, more importantly, I want people to consider giving. Financially, times are tough for most of us right now, and that translates into fewer and smaller donations than usual. Of course, the need remains, and applications for assistance keep coming in.
I think its important to note that the money is not just sent out to just anyone. There is an application process, and the stories are vetted. These are amazing, resilient women, who found the strength to ask for help when it became necessary. These are women who take care of others, but at this moment, need some care taking from others. Here is another family that the Pink Daisy Project helped.
This is Shelly and her son:
My name is Shelly and I’m a young breast cancer survivor.
During treatments and surgeries my marriage fell apart, I was unable to work and had another surgery in a week when me and my son had to leave an abusive life. I was terrified!
School was getting ready to start and I couldn’t even get pencils for my son.
Pink Daisy stepped into my life at that point, I received gift cards for Kroger , with those I was able to get all the supplies my son needed! I was also given food cards that helped us to have what little money I had go towards getting utilities turned on and food in our stomachs.
I cried with relief to be able to do these things, my son had already been thru so much, watching me go thru everything with treatments, and lost his world when we had to leave. And PDP helped me help my son thru the most difficult time we ever faced.
Me and my son have plans to help pay this gift forward so other families in same positions can get the help and lifeline Pink Daisy gives! We thank Pink Daisy and all the supporters of this wonderful group with all our hearts!
Please consider giving, or at least sharing this story.
This is a sponsored post by me on behalf of Lifescript.com.
After my breast cancer diagnosis, I spent many late nights curled up with my laptop and Dr. Internet, becoming increasingly terrified by the grim prospects offered up by the search engines. I needed information, but I had forgotten that the internet favors sensationalism, so the most extreme cases rise to the top. (more…)
There is a certain coziness to autumn. After the chaos of summer, it’s the time when we settle back into routine; we find a rhythm. It is the time of comfort food, of warm colors, and crisp breezes. It is the season of pumpkin pie.
Once upon a time, autumn was my favorite season, but all that changed a few years ago.
October – Breast Cancer Awareness month
In September of 2010, I looked forward to October with some enthusiasm. It was my first Breast Cancer Awareness month since my diagnosis 7 months earlier, and I didn’t know what to expect. I thought a month dedicated to people like me might be fun, and there were some amazing fundraising parties, but I was not prepared for the Pepto Bismol-colored tidal wave that engulfed me.
Now, when I think of fall, it’s with white knuckles. I’m either bracing for, enduring, or recovering from Breast Cancer Awareness month. In October, those of us with breast cancer don our pink boas, and work frantically to earn money for the legitimate organizations that are truly working for a cure, or helping people to live with cancer. Meanwhile, hucksters get rich off my misfortune by slapping a pink ribbon on a product, then bumping up the price by $5 to donate $1 to breast cancer charities. Everything is painted pink, even carcinogenic items. Well meaning friends pass around internet memes where they pretend to be pregnant, and this is supposed to somehow give hope, or something, to those women who lost their fertility to breast cancer. Everything is all about breast cancer awareness, as if breast cancer was some newly discovered affliction, and awareness could actually help you avoid it.
Yes, it’s true that there are things you can do to reduce your odds. But as of today, there is no guaranteed prevention, and there is no cure.
This morning, my YSC family lost another angel. This was the third loss for us in as many weeks. Rachel was interviewed for the same CNN Heroes story as me last year – the one where we honored Debbie Cantwell, and the Pink Daisy Project. In this clip, you can hear her voice, you can see the sparkle of her big smile, as eye catching as her orange bandanna.
We are warm blooded women, with hopes and dreams and responsibilities and heartaches. We are mothers, daughters, sisters, friends, lovers. We are individuals.
We are not mascots.
We are more than statistics.
Over the coming month we will be lumped together and presented to you as a barrage of numbers. 1 in 3 get cancer in their lifetime. 1 in 8 will get breast cancer. But I want you to see the faces behind the numbers. And I want you to pay attention to what these campaigns are really fighting for. Be wary of campaigns that are just for breast cancer awareness.
My friends are dying, and it’s not for lack of awareness.
I am aware of breast cancer, and I was for decades before I was diagnosed with locally advanced breast cancer.
You, no doubt, are very much aware of breast cancer as well.
Awareness will not prevent breast cancer, and while it can sometimes improve projected outcomes, early detection and treatment does not guarantee that the cancer will not return.
We don’t need more awareness. What we need is a cure.
For all the frustration that surrounds Breast Cancer Awareness Month, there are some wonderful organizations who are doing laudable work in the breast cancer field, and these organizations depend on the funds raised in October for the following year’s budget.
Pay attention to what a breast cancer charity is fighting for. Are they raising money for awareness, or a cure? If they’re working towards a cure, how much of their research money are they putting towards the stage of breast cancer that is actually deadly, metastatic breast cancer? There are also a number of much needed breast cancer charities that do not focus on research at all, but their services are critical to the lives and well-being of women living with breast cancer.
Just to cut through the crap a bit, I’m going to list a few organizations below that do an excellent job of serving the needs of women with breast cancer. This is by no means an exhaustive list.
The Young Survival Coalition: YSC helps young women live with cancer, to connect with others with similar experiences, and to not feel so alone. I credit YSC with helping me keep my sanity while going through treatment.
The Pink Daisy Project helps young women with breast cancer to deal with the practical aspects of life while they are going through treatment. This is the organization highlighted in the CNN clip above, and they help young women who can’t wait for a cure. PDP hired someone to come clean my home while I was going through chemo and to sick to clean it myself. They sent me gift cards to buy the necessities of life when I was counting change from the couch to buy diapers.
The National Breast Cancer Coalition is so serious about curing breast cancer, they set a deadline, 2020. Their approach is science oriented rather than political, and they are committed to this goal.
The Dr. Susan Love Research Foundation – this science oriented research organization is also working on some groundbreaking research towards the goal of ending breast cancer in our lifetime.
Living Beyond Breast Cancer – the goal of LBBC is to empower all women affected by breast cancer to live as long as possible with the best quality of life.
If you find yourself tempted to buy something you don’t really need – just because it’s pink and it’s October – why not send your $5 (or whatever amount) directly to the organization of your choice instead? That way it’s tax deductible, and you know for sure that all the money is going to the charity.
Help us find a cure for cancer. Help us make pink just another color. Help us take back October.
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