Type of Cancer: Breast cancer – Stage IIIC triple negative breast cancer
Stage at Diagnosis: Stage IIIC
Treatment Plan: double mastectomy, 16 rounds of chemo 1 year of avastin
and 25 radiation treatments.
Current Status: Currently NED
How did you tell your kids about the cancer diagnosis?
We talked about the surgery to remove the sick breasts we talked about the medications and how they would cause. me to lose my hair and make me tired and not feel good. We had several books.
How did your kids respond?
Both girls were 3 years old and they did well we had a lot of support.
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?
accept help when offered and ask for help when you need it,
Is there anything you wish you’d done differently?
I wish I had been well enough to work through treatment; the financial struggles were awful and still are. I should have asked for help sooner. People want to help and need to know what they can do.
How did the impact of cancer change as time passed, and your children grew? Did it change?
I think some of the effects are just starting to show. The girls worry more than they should have to. They do not really remember how sick I was. Just that I was bald.
Do you have concerns about the long term impact of your cancer on your children?
I worry that as they get older the realities of cancer and the risk of losing ones life will worry them. They were to young to understand that cancer could kill.
What advice would you give to other moms who are diagnosed with cancer?
Be as honest as you can with your children. They will know something is wrong. If you talk to them they will be less fearful. I think the unknown is more frightening than the truth.
What concerns or fears troubled you the most?
The fear of not being here to raise my little girls. I was blessed by adoption and I was terrified I would not be alive to see my babies go to kindergarten. They are now 1st and 2 graders.
How did you deal with those fears?
I strengthened my faith and did everything in my power to get healthy.
Have those fears and concerns changed over time?
I still worry that the cancer will come back. I just take it one day at a time.
What was your darkest moment?
getting the pathology back after my mastectomy.
What was your best moment?
the last day of active treatment
Did you decide to add more children to your family after your diagnosis? How did cancer figure into your decision?
I would love another child
What did you do to take care of you? How did you splurge on yourself?
I rested when I needed to and spent time with family and friends
Were you able to get help from friends and family members while you were going through treatment?
yes. I was lucky
Was it difficult to ask for help? Do you have any suggestions around the topic of asking for help?
It was difficult and still is. But I have found that many want to help and do not know how to offer. They are often grateful to be able to do something for you.
Did you have an online resource that helped you through this experience?
Young Survival Coalition
Did cancer/treatment impact your relationship with your spouse/partner?
Yes very negatively. In the long run we will be getting a divorce
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?
That cancer does not end when treatment ends; it forever changes 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
What are some solutions you found to practical problems of combining cancer treatment with raising young children?
I was lucky my parents live close (5 minutes) so they kept my girls the night before treatment and the night after. They also kept them for the 4-6 week stretch after my mastectomy so I would not lift them. I was close enough to see them anytime and was able to let my body heal.
My Cancer Story is a collection of my blog posts and articles about my cancer experience over the years. I decided to pull them all together into one place to make them easy to find.
This turned out to be a much bigger projected than I expected. I’ve cataloged more than thirty here so far, and there are many more to add.
This is a work in progress. I will continue adding the posts already completed as well as the new posts to come, so check back from time to time. Tags are coming soon to allow for searching by topic.
It has been an eye opening exercise to go back through these posts and see how my attitude, perspective, writing style, and my life in general have all evolved over time.
My hope is that these pieces will provide someone with cancer some measure of hope, comfort, and useful information to help them along this difficult road. Even if you don’t have cancer, you just might find this story interesting.
We hold on to each other, we revel in memories, and we pop a bottle of champagne to toast your memory while flipping cancer the bird. We embrace those who are still with us, and carry forward the memories of those who have gone before us.
Not only is Barb riding in the West Coast Tour de Pink, but in September she completed the East Coast Tour de Pink, and earlier this year her gorgeous cherry blossom design was selected by Liv/Giant for their official Tour de Pink bicycle.
Barb isn’t alone in this, and that is one of the reasons that the Young Survival Coalition (YSC) exists. Cancer can be very lonely, and much of the the breast cancer outreach is oriented towards senior citizens, and does not address the issues faced by young women, such as dating after a mastectomy, fertility, building a career while battling cancer, a cancer diagnosis during pregnancy or while breast feeding, and too many other issues to list here. YSC is there to help make sure no young woman has to go through breast cancer alone.
Barb is not alone on the ride either; she has a team pedaling along with her. Team Sakura is named for the Japanese word for the cherry blossom. These delicate blooms have taken on a special meaning for the members of our YSC group in Seattle. The blooms light up our spring, and they signify the temporary nature of life, as well as it’s delicate beauty. And they remind us to embrace each moment, to live fully, throwing everything we’ve got at life.
And so they ride. They ride to get back at cancer, they ride to support each other, and they ride because they can.
Last year’s Tour de Pink was the first for Karen Lawson as well. Neither Barb nor Karen thought of themselves as athletes. Karen said, “I thought it seemed beyond my wildest dreams. I could barely walk during treatment and physical exercise afterwards seemed like a million miles away from what I could manage.”
Barb and Karen trained together, along with their partners, Brent and Sebastian. The training can be difficult, often extending over a hundred miles each week. But completing the ride was a fulfilling experience:
“I’m awed by the support and love from all the other riders and volunteers. They are so dedicated. And then I’m so awed by the survivors riding. Really taking back their lives and doing something so hard with such grace. The ride is really tough, but it also feels really safe because there is so much support. It was a great achievement and made me feel really powerful. I didn’t have anything to prove to anyone but myself and I’m proud that I did that.”
This year they’ve got a much bigger team, that means more support, and more fun and antics as they prepare. Training is still intense, but they always travel at the speed of the slowest rider. It’s not a race, and no one gets left behind.
Sheila Cain is new to the Tour de Pink this year. She was surprised at the commitment involved in training. In the beginning she thought hour long rides were time consuming, but now six hour training runs are frequent. The sacrifice and the challenge of the Tour de Pink is not just the 200 miles one weekend each fall, it’s also the months of training that make that ride possible.
[Photos provided by Karen Lawson and Nicole Taylor]
Team Sakura Members:
Carl Taylor* *training only
These amazing people have done so much. They’ve endured the cut, poison, and burn that is cancer treatment – or they’ve been there for their partners through it. They’ve put in the blood and sweat to train for this event. The members of this team have logged countless hours volunteering for YSC in other capacities as well. And now, they are ten days away from the start of this epic ride.
They have a team page, and they have a team fundraising obligation of $25,000, and they are almost there. But not quite. As of today, they are about $1,500 short.
I’ve talked about YSC ad nauseum on this blog – but only because I am so passionate about this organization. The doctors saved my life, but it was YSC that saved me, my sanity, my spirit, my sense of self. I had wonderful friends and family members who were so helpful during treatment, but they didn’t comprehend what I was going through. The women at YSC did, and they helped me pull myself through.
I wrote this post last year, but Team Sakura rides again this year! Here’s a link to their 2014 fundraising page, in case you’re inclined to support these amazing women, and this organization that helps so many women living with cancer.
I have this enduring image of Candice in my head. It’s not real, it’s imaginary, but there’s truth in it. She’s wearing a white Grecian gown and angel wings. No, not actual angel wings – these she crafted, right there in my imagination. She whipped up these wings from 14-gauge wire, feathers, a bolt of vintage white and gold Hollywood Regency fabric, and her emergency glitter supply. They’re fabulous. So was she.
It’s her posture that really grabs my attention: a shrug, with her shoulders and hands slightly elevated. And with that shrug, she says “Hey, I’m not one to judge. Whatevs. But it seems like going out and doing something fun would be a better way to remember me than just sitting there on the couch.”
So I went to a party.
Ok, so it was a gathering of her friends with breast cancer, but she would have understood and approved.
We tried to wrap our heads around the fact that this bright light in our circle of friends was gone. We all wrestled with our own mortality. We talked about how difficult it is to describe Candice, and have people really understand just how awesome she was, or how deeply her absence is felt, about the urge to insist, “But you don’t understand! This was CANDICE!” Of course people didn’t understand, unless they’d met her. You only had to meet her once to really get it.
I mean, this is the girl who responded to the diagnosis of Stage IV cancer by learning to play the ukulele.
She really lived. She had a short life, 31 years, but she lived the full breadth of it.
The first time I met her she walked in bald and bold and lit up the room with her megawatt smile.
This was a support group for young women with breast cancer (Young Survival Coalition), and most of us showed up the first time not just bald, but feeling exposed, raw, and terrified – of both the cancer and the prospect of group therapy.
I remember tucking my feet up under me on the couch, and trying to hide behind a throw pillow, as if that was possible.
Not Candice. She walked in with a kind of confidence that made everyone take notice. She was even a bit giddy, asking so many questions, and even stopping to apologize for taking over the conversation. But glancing around the room, I could see the other girls were just as thrilled as I was with this new energizing personality in our group.
We all leaned forward when she spoke.
She had this big, generous spirit, ready to help out, lift spirits, or whatever was needed. But she didn’t take shit. She would call your shit out in a heart beat. I loved her for that. too.
We often discussed the bullshit that surrounds cancer, the stupid Facebook games where people pretend to be pregnant and that’s some how supposed to be supportive of people with breast cancer or spread breast cancer awareness… I could never figure out how anyone thought that would help. It just pissed Candice off. The way people tell us, “Oh, you’ll be fine, you’ve got a great attitude.” As if cancer paid any attention whatsoever to my attitude, or anyone else’s.
Candice did have a great attitude; can we just retire that particular turn of phrase?
Candice and I had this knack for getting hospitalized at the same time. She spent much more time in the hospital, but it seemed each time I went in, she was already there or showed up shortly thereafter.
This would be a bit more fun if we were roommates, or even showing up at the same hospital. But no, she went to Swedish and I went to UWMC, and then we’d sit up with our phones and laptops and text from one bed to another, laughing at the absurdity that so often accompanies cancer.
One afternoon after she was admitted to her room (I was at home) and we were chatting online when I had a medical situation come up. I called my nurse and they decided I should head straight in to the ER. Unfortunately, I was 20 miles away, and my car was in the shop.
I was still online with Candice, and she sent her husband to pick me up and take me to my hospital. Again with the absurdity as he left his wife’s side at one hospital to retrieve me and drop me off at another hospital before returning back to her.
There were so many stories like this we shared at our cancer girls party to remember Candice. We laughed. A lot. And then we got out those wild wigs that Candice rocked, and in a move we’re sure she would have loved, we each donned a wig (there were exactly enough wigs for our party) and toasted the memory of our dear friend.
I’ve been sitting on this post for nearly 3 weeks now. Partly just processing, trying to come to terms with losing my friend. But part of it is also the perfectionist in me. I don’t want to end this post right here because there are so many things I haven’t said yet – things I haven’t figured out how to say, funny stories, photos locked away in a cantankerous hard drive that I still need to retrieve, and I’m sure I could rework a few of those paragraphs a couple dozen times . . .
But I’ve got to let it go. I’ve got to get this posted, because in some odd way, withholding this post is keeping me from saying goodbye. And as hard as it is for me to say this, it’s time for me to start saying goodbye to my friend.
So I will leave you with this video of Candice Bailey and her ukulele and a friend singing “Sunshine through the Rain.”
28 women finding ways to squeeze the day, every day, while living with cancer and it’s after effects.
Every year we converge on this little retreat center in the woods, on the edge of the canal.
Every year we laugh, we cry, we eat, drink, and dance,
We challenge each other, we hold each other up.
And even more importantly, we rest, and we are cared for.
Every year I come back home feeling two inches taller.
P.S. This year, I brought a spare camera and handed it over to the group, asking them to take pictures as well. I’m so glad I did. I came home with pictures that were complete surprises to me, and this year, I was so engaged in just being present that I hardly took any pictures at all. Thanks so much to my friends for picking up the slack.
P.P.S. The link in the first line will take you to the poem I read at the retreat. It resonated so profoundly with so many of us, and I received many requests for copies. (I’m not affiliated with the writer of the poem, but when you write stuff this good, it deserves a link.)