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 think there should be some kind of trophy, or medal, or certificate of achievement, something anyway to mark the completion of cancer treatment. I understand why it’s not done, but nonetheless it seems like all this hard work and endurance should reach some point of crescendo, a climax, a triumphant overcoming of the evil beast rather than just sputtering out at the end with a casual “have a nice life.”
I have Herceptin infusions scheduled every three weeks for several months. One of those appointments was today. Today was a rough day; one of those days where everything seems a little more complicated than it should be. Keys are lost, things forgotten, I trip over my own feet, and I’m just doing good to remember where I am, and where I’m going. But I did manage to make it to the Seattle Cancer Care Alliance on time to have my port tapped for the blood draw.
After the blood draw we had the standard 2 hour wait till the doctor appointment, followed by my Herceptin infusion. Or so I thought. A long boring wait only to find out when we checked in that we missed the appointment; it was scheduled for an hour earlier. It took several phone calls and discussions between staff members, but they were able to squeeze me, and my now slightly elevated blood-pressure in.
Right off the bat, my doctor asked me if I want to have another baby. “I can refer you to our fertility specialist, if you would like.” Wait. What?
That was the farthest thing from my brain at the moment. I’d love for Gem to have a sibling, but I’ve been so focused on beating cancer, and moving mom out of her apartment, and the trip to Alaska, and then moving us out of our apartment that thoughts of baby-making, aside from the semi-regular baby-making practice, have not been on the agenda. I really thought this appointment would be more about the wheezing and extreme heaviness in my chest I have been experiencing since we moved into our new apartment.
Which I told her. So she listened to my lungs and wrote an order for a chest x-ray to make sure the cancer had not spread.
Then she proceeded to tell me that today would be my last treatment.
Wait. What?
I’ve got months of treatment left. Besides, if this was my last treatment, I would have baked brownies for everyone and scheduled a party or something. I love my doctor, I love my nurses – I want to celebrate and thank them. She looked back at the chart, checked again, yup, today would be my last treatment. I’m done. We’ll just cancel the extra appointments.
Then I was whisked off to infusion for the treatment, which was pushed through faster than usual so I could run down to radiology and get the xray in quick before they closed for the day. While all this was happening, the baby blew out her diaper, so my still-fearful-of-poopie-even-though-he’s-been-a-father-for-two-years husband had to deal with a very cranky toddler with more poop than her diaper could handle and not enough wet wipes on the planet while I proceeded to lose my cell phone running between appointments.
We finally got everyone back together and mostly cleaned up and in the car stuck smack dab in the middle of Seattle 5pm downtown gridlock when I discovered the missing phone. The phone they were going to call with the results of the scan.
…
Finally, we’re home. We have the phone, which no one has called. It’s 8 pm and no results yet. No news is good news, right?
So, either I’m done with cancer treatment- or I’m not, and in a very bad way.
I feel like I should be celebrating right now, but I’m more stunned than anything.
UPDATE: results are in – XRAY IS CLEAR! I’m done with treatment!
The first rule of getting along with other people after you become a parent is don’t brag about your child all the time. Or ever, actually. I break that rule every day. I’m one of those annoying moms – always trotting out the latest cute or amazing thing that my gorgeous little girl did. If I wasn’t your mom, I’d nauseate you. Actually, I’m sure your tweener, teen, and early adult years will be consumed by me nauseating you. It’s in the job description. But I’m getting ahead of myself here.
So here I am, a mommy blogger, discussing rules about how parents shouldn’t brag about their kids all the time. But, again, it’s in the job description. I mean, really, if your mom isn’t utterly amazed by you, over the moon about you, if your mom doesn’t brag about you… who will? I don’t want to follow this train of thought too far, because the sad truth is that some kids don’t, for whatever reason, have someone who really goes to bat for them. Part of me wonders if this is the reason for the previously mentioned rule, but I know better. This rule rests on a much more shallow foundation.
The truth is, bragging moms are annoying.
On the other hand, if there is one place on earth I should be allowed to brag about my darling daughter, it should be on my own blog, in a letter directly to her. Prepare to be annoyed.
To lighten things up a bit, I’m going to limit this letter to bragging about about the adorable things you do imperfectly.
There is nothing that makes my heart smile quite like watching you put your green Hello Kitty rain boots on the wrong feet and dancing around the living room.
You pronounce applesauce and princess exactly the same way (“sausaus”).
I didn’t think you knew any numbers above ten, but last night we were looking at a book, and when we got to page 25, you said “five-twent.” I was sure I heard that wrong, but you turned the page and then said “six-twent.”
At the store the other day we were looking at stuffed animals, and you picked up the rhinoceros and called it a triceratops. How does a 2 year old store a four syllable word about a dinosaur with horn on it’s nose, and retrieve it at the appropriate time? I don’t care if you were wrong about the rhinoceros, I’m just blown away that you were wrong in such a cool way. I could never tell the dinosaurs apart (in fact, I had to go online and look it up), but from now on, I will always remember that the triceratops has a horn like a rhinoceros. See, parents learn things from their kids all the time.
I hope this doesn’t make you feel like you’ve been made fun of. Perfect is boring. It’s also an illusion. You can spend your life chasing perfection, but when it comes down to it, when you take stock of what you really love about someone, what makes your heart swell, generally the imperfections weigh in pretty heavily. That’s not to say you shouldn’t try your best, or try to improve. It means don’t be afraid to fail; don’t be afraid to try something because you won’t be perfect the first time. It means don’t let your stumbles paralyze you. Pick yourself up, and keep dancing, even if your boots are on the wrong feet.
Imperfections make us unique, approachable, and lovable. And you, my darling daughter, are infinitely lovable.
Today is the one year anniversary of my cancer diagnosis. This is actually a big day for me. It’s the anniversary of the day my life was turned inside out, and it has put me on a wild emotional roller coaster ride. Thinking about this cancerversary has eaten up all my energy and focus lately – right in the middle of midterms for my school and due dates for my other writing projects, as well as finals for daddy’s school, and his preparation for teaching classes next quarter, and all the other urgencies and emergencies we tackle day after day. Here we are less than two weeks away from your second birthday, and I’m just now getting around to writing this letter for your 23rd month. I haven’t even started planning your birthday party.
Don’t go thinking you are being neglected. You are by far the best part of my day – the one I will drop everything for, no matter what.
But it’s important to know that there are times when life is like this. There are times when everything seems to be coming at you from all different directions, right while you’re dealing with an emotionally heavy load, and you just can’t seem to get anything done. Forget everything, it’s hard to accomplish even one thing. It’s hard to focus; when you react to one urgency, 3 more show up right away from other arenas. You bounce from crisis to crisis, putting out fires without ever touching those all important items on your to do list…
Yup, everybody has days like that. It’s part of the human condition.
That is the most important thing to know about this situation. That when you are overwhelmed like this, you are not alone. Everyone else has been there, they know what it feels like. The details may differ, but the everything-all-at-once-ness of it is universal.
Lately, you’ve taken to holding your little hand up, palm out, and telling me to “Stop” when things aren’t going quite the way you think they should. I’m not quite sure where you got that from, it’s not something that I do, but that idea might be right where you need to start in order to get through a situation like this. Well, without the hand gesture. Most grownups don’t respond very well to that particular gesture. But take a minute. Stop everything. You might even need to tell people that unless someone is bleeding or on fire, you need 5, or 10, or 50 uninterrupted minutes to sort things out. Lock yourself in a closet if you have to, and take some time for yourself.
Taking a long walk is also a great option, if you’re in a place where you can do that. An outdoors walk is best. Yoga is also a great option for releasing nervous energy and helping you regain focus.
Then once you’ve expended a good bit of that nervous energy, come back and pull out a notepad and start writing. Write whatever. Anything and everything that comes into your head. Just dump it all. Let it all out. I call this the brain dump. I got the idea from the Artist’s Way, where you start each day with writing time. The idea is that all these little stressful bits and pieces of everything that you’re carrying around with you are keeping you from connecting with your creativity. While I don’t necessarily do pages every day in the morning, I do agree with the general idea. I find that all that crap floating around in my brain gets in the way of my productivity as well. So just empty your brain onto the page. Shred the pages when you’re done if you like, this is for you and no one else. You’re just clearing your head of all the noise and static.
Now you can start writing your to do list and prioritizing items. This whole process could be done in half an hour or less, but would likely be more effective if you invested a little more time.
Of course this wont make all those emergencies go away. But it will help you dodge, parry, duck, or deal with all the crap that comes flying at you.
I went through that process myself today, and as a result, I’ve decided that your birthday party is not going to happen in March. And since I have a conference and finals in April, it might even be later. I suppose we could just cancel the party altogether, but I do love getting all our friends and family together, and it doesn’t happen very often. I have also been looking forward to using your birthday party as an opportunity to say thank you to all the people who have been so supportive of us through this entire cancer ordeal (and I can’t bear the thought of missing one of your birthday parties). I still don’t know what I’m going to do as far as that is concerned. I just know I’m not going to put the time and energy into a party for this month.
I have already started rounding up and just telling people you are two years old. There’s a part of me that resists this still, but you are behaving like a two year old. Yes, the temper tantrums, and the back arching, and the constant testing of boundaries, but also a more sophisticated sense of humor, you can count to ten, know all of the letters, and draw these amazing little smiley faces.
We’ve had a rough, and very busy month. You even had your first Emergency Room visit with a significant fever and cold. But we got through it all, and we had a lot of laughs, too.
You bring so much joy to our lives. I’ve had a very difficult year, but there has not been one day since you were born where you did not brighten and improve my day.
You are starting to learn the power of manners, and the call and response of some of our social conventions. You’ve had Thank You down for a little while now, and you are getting so much better with Please. It’s so cute when you say please, you clasp your hands together and look up at me with those big, earnest eyes. Oh, I’m such a sucker for that look. But the one that really cracks me up these days is your discovery of the bless you response to a sneeze. I can tell when you’re going to do this, because you smirk and get a twinkle in your eye first, and then “ah… ah… choo!” you fake sneeze to see if you can get someone to say Bless You. You especially love doing this in elevators.
You are a very compassionate little girl. You’ve latched on to the word OK, and it holds a great deal of meaning for you. If I cough, or trip, or make any kind of an owie type of sound (my official line is that I don’t curse in front of you, even if I stub my toe) you ask me if I’m OK. “K? K? K? Mama, K?” You will keep asking until I say “Yes, I’m OK.” And then you give me the biggest relieved smile. Of course you also expect me to ask you if you’re OK if you stumble, or choke on your milk. Not that I wouldn’t anyway.
This carries over on the playground, too. If another child is crying, you’re right up in his face asking if he’s OK. But these poor kids don’t understand what you’re asking them. The other day you dropped your babydoll, Molly, and then you got down on your knees, bent down and kissed her, and asked her if she was OK. She didn’t answer, either. “K? K? K, baby?” Oh, my heart.
Grandma introduced you to Cheetos
You are so genuine; you’re not consumed with what others think of you. I hope you can hold on to that attitude. It can be really tempting to get caught up in the opinions of other people, and even put on an act to pretend to be the person you think they want you to be. I’ve done that myself on occasion, and I don’t recommend it. That approach leads you away from happiness, not towards it. Being true to yourself is the big part of being happy.
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