I wrote this for the Cedar Falls Times. It was published last week.
August 2012--I had been waiting all weekend for my biopsy results. I was having trouble sleeping. I couldn’t decide what would be worse: knowing I had breast cancer or getting news that I didn’t have it. Here is my story.
Ever since I was a young girl, I knew I’d get breast cancer. I had good reason. My mother’s mother got breast cancer at age 39. My mother’s sister got breast cancer at 41. My mother’s other sister elected to have a preventive mastectomy shortly thereafter. Breast cancer runs in my genes.
About five years ago, I was tested for the BRCA1 and BRCA2 genes—which are associated with increased risk of breast cancer. I was certain that I would carry the genes, but I didn’t. It was good news, but also bad news. With no provable genetic predisposition to breast cancer, I was left to keep advocating for myself. I demanded annual mammograms starting at age 30 (roughly 10 years prior to the age of my aunt’s and grandmother’s diagnoses). I got resistance from my doctor, so I got a new doctor.
Last August, I had my yearly. It was nothing unusual. So I was surprised when my physician called me at home an hour later. She said that she had reviewed my chart and noticed an increased risk for breast cancer in my family history. She said that I was a perfect candidate for the high-risk breast cancer clinic at the University of Iowa. She asked if she could make a referral for me and I agreed.
On my third trip to the high-risk clinic, they found a cluster of cells (using breast MRI and mammogram combined) that the radiologist and oncologist didn’t like. It was time for a breast biopsy.
The doctors said because it was caught so early, it would probably be either non-cancerous, a stage 0 cancer or stage 1 cancer. If it was not cancer, then I’d be back on the “every six-month” appointment schedule. If it was stage 1 or worse, that would be scary. I decided to hope for a stage 0 cancer. Just enough cancer to get insurance to pay for surgery, but not enough cancer to freak me out.
Then the call came. “Well it’s not nothing. It’s a stage 0 cancer. It’s ductal carcinoma in situ. That means it’s still in a breast duct, and likely noninvasive.” I breathed a sigh of relief. “Typically we’d do a lumpectomy and radiation.” The doctors said there was a high chance of recurrence in one or both breasts. I asked, “Can I do more than that? Like a double mastectomy?” She said yes.
Once I got my diagnosis, my doctor and I could choose the best option for me. And the best option for me included: no more six-month checks, no more waiting for biopsy results, no more waiting for the other shoe to drop.
I was 36 years old. Like most women, I liked my breasts. (To quote a card I once saw, “Yes, they are fake. The real ones tried to kill me.”)
And even though I didn’t have “The” breast cancer gene, it is likely we have a family gene causing breast cancer. Even worse, we can’t test for it yet.
My friends got pink hair extensions prior to my surgery to celebrate life. Front row: Sarah Doerder, Sarah Pauls, me, Libby Waterbury-Hildahl. Back row: Kaitlyn Tiernan, Mariah Andrews, Lindsay Pieters, Jen Miller, Jill White
Surgery was a month later. It was the day before my daughter’s sixth birthday. It was seven hours long. And it was not an easy recovery. I was a candidate for a one-step surgery to remove my breast tissue in both breasts and have implants put in at the same time. It took three weeks to recover. I am proud to say that I reduced my breast cancer risk to less than five percent, lower than the average population, which is a lifetime risk of 10 percent.
I had missed picking up my daughter from the bus for three weeks. So I was happy to surprise her one day. The bus door opened and my Lucy bound down and gave me a hug. I looked up, and the bus driver said, “I hope your back feels better.” I waved at him as he drove off. I asked Lucy what he meant, and she said, “Well it’s easier than talking about the front side!”
That is why I share my story. Breasts are not easy to talk about, no matter how old you are. I share my story for Lucy. I pray that medicine continues to improve. I hope more people find cancer at stage 0. I hope there are more tests to help people know their risks. I am enrolled in a clinical study to help pay it forward. I hope we find our family gene or other markers to help people understand their risks. I pray health insurance becomes affordable for more people. If I had another type of insurance, I would have paid $10,000 for each six-month MRI. Which means I would have simply said no way.
Most of all, I share this to let people know to talk to your doctor about family history and risk factors. While you can’t change your family, as much as you might like to sometimes, their paths can actually help change your path. I believe that my gynecologist saved my life. My cancer ended up being a 3-centimeter, high-grade, estrogen positive, aggressive cancer. A year or two of waiting and my diagnosis would have been completely different.
The phone call with the biopsy results changed my life. It took the death sentence of breast cancer away from me. I guess I better start jogging, I could be here for a while. Let’s hope.
Hidden or exposed
People are fighting them
Be strong, be kind
Chris took this photo. I love it for many reasons.
- I love the big sunglasses on his t-shirt.
- I love the tiny book he is holding.
- I love his new Nikes that he can put on all by himself.
- I love that Jude is sitting next to figurines from Toy Story.
- I love his fedora, that he calls his cowboy hat. He's Woody whenever he wears it.
- I love my Mother's Day gift of TOMS shoes are in there too.
- I love that we are waiting to see one of Jude's amazing specialists, Dr. Drack. She is one of 10 in the nation working in her field.
We recently watched the movie Toy Story as a family. It was one of the first times we've been able to find a movie that held Jude's interest (beyond Thomas the Train) and that we could all enjoy. The TV sits low to the ground, and we all enjoy the view of the TV around the back of Jude's head. We don't even realize it anymore.
I remembered that we used to have all the little matching Toy Story Toys. So I rounded them up as best I could, and I gave them to Jude. He loves to play with them now. All except Buzz Lightyear. That's because BUZZ IS MISSING. You have no idea how this drives me crazy. I have a little OCD. I have looked in the toy room, in Lucy's room, in the basement, in closets--no Buzz Lightyear.
It's been a little bittersweet looking through all the toys. Most of them are Lucy's toys from when she was a baby, then toddler and now a big kid. I remember each stage with fond memories. I found a whole stash of Polly Pockets that Lucy used to call "Wolly Pocks" at age two.
Some other fun Lucy names from age two:
- Skunks were Stunks.
- Thunder was Thumber.
- Airplane was Hair Plane.
- Jump rope was Jump rote.
- Strawberry Shortcake was Strawberry Hortcake.
When Jude was two, he didn't really talk or play with toys. So most of his early "toys" were educational and therapy-related. Most do not have happy memories. I remember I went to a book store around Christmas when Jude was almost three. A clerk asked what I was looking for. I said educational toys that involved cars and trucks. She asked how old my son was (he was not with me) and I said, "He's three, but he's developmentally behind." She said with a straight face, "Well if he's three, how behind could he be?" It was hard to hear. The truth is, he was behind by more than a year in most areas.
Jude is doing much better now. He's still behind, but making great progress everyday. He's doing imaginative play, knows his letters, numbers and colors. He is potty trained (there's a whole other blog to be dedicated to that process).
So, now we are on a mission to find Buzz Lightyear. And every time I open a drawer or box in our toy room or container in Lucy's room, it looks like this:
Lucy is apparently a hoarder! And I have been her enabler. No more. We are starting the process of decluttering, and we WILL find Buzz Lightyear! Stay tuned. To infinity and beyond!
Out of control
I hope we find
Jude graduated from the UNI Scottish Rite Early Language Program in May. A few weeks prior, they had a section in class about flowers. They toured the UNI botanical center and did a craft. Each kid put seeds into a little plastic cup and covered it with dirt. One of Jude's favorite clinicians (grad students) brought the cup to me. "He had a lot of fun playing with this dirt. The seeds went everywhere, so I'm not sure if anything will actually grow," she said with a smile.
There was a time when Jude wouldn't touch sand or dirt or grass. Imagine if you can't see very well. Everything prickly or messy seems foreign and strange. So I was just glad that he had fun and played in the dirt. I brought the little cup home and placed it near a window in our kitchen.
I do not have a green thumb. But every once in a while, I'd water it. Here it is today. Scroll down please.
Keep on surprising us, Jude.
Placed in dirt
Nurtured, watered, sunned, loved
Although I am not over 50, I love the TV Show "Sunday Morning." A few months ago they had a video about weeds: Our War Against Weeds. There is a link below if you have about eight minutes.
"What is a weed? A plant whose virtues have not yet been discovered." - Ralph Waldo Emerson.
Last summer, we had a drought. Our lawn dried up, dead and brown. But through the cracks of cement, tall and resilient weeds thrived. Many weeds, like thistles, can be hacked down to ground level but still recover and produce even more vegetation than before.
We can learn a lot from a weed. A weed is a survivor. A weed actually does better when everything else is failing. A weed can adapt and become resistant to it's enemy the weedkiller, Round-Up. I think I'm more a weed than a flower. And many of the people I admire most are also weeds.
- Judy and Laurie Corkery. Can you imagine being married with six and nine children respectively and losing your spouse? A flower would have been crushed. But these amazing people found each other and even decided to have another child. My Chris.
- Lee Albertson. A minister. Three kids. His wife dies of cancer at age 46. He did not give up. In fact he put his life on hold for many years after to make sure we were all taken care of. We all graduated from college and can thank him for giving us such a good start in life.
Sometimes I get really mad. I forget that life isn't fair. I want it all my way. But then I remember, that I'm a weed too. Weeds will always find each other. Happy mother's day to all the weeds in my life.
- Stephanie Pershing. Chronically ill for more than two decades. She told me once that she didn't want her illness to define her identity. She is brave, outspoken, a wonderful wife and mother. She lives every day to the fullest. When her family wants to take a trip, they go. We can all learn from her example.
- Amanda Weichers. Her son nearly died as a toddler during a seizure. She and Andy are amazing parents to Beau, who was diagnosed with Partial Agenesis of the Corpus Callosum (P-ACC) as well as Epilepsy. They also started a non-profit organization and raise about $10,000 every year to help kids like Beau. And they welcomed a beautiful baby girl Delaney last July.
- All my Price Lab buddies. The school is now being torn down. There is a fence around it. It can feel devastating. But the children and parents move on in its honor. We remember the amazing place that existed in our backyard and now lives on in our hearts.
Hacking them down
Makes them grow stronger
7,056 miles. That's how many miles I've driven Jude to therapy in the last year. It's 56 miles to Witwer Children's Therapy center in Hiawatha. That's 112 miles round trip. We do this every Monday for a reason: The services and people there are worth the drive everytime.
When we first started going, Jude couldn't physically hold the iPad to entertain himself during the ride, let alone run the programs. I had to hook it onto the back of my headrest. Usually I'd pull off on a ramp to change the show if it abruptly ended. I'm happy to report that now Jude can hold it and he can run it--freely changing videos and switching between Thomas the Train and Wreck It Ralph. He wears headphones. But he can't fix them if they fall off. So we use a sport headband to keep them on. We get some strange looks in drive-thru windows but whatever it takes, right?
So why do we go to therapy? Jude has a hard time talking and we do 30 minutes of speech therapy. Then we go across the hall to occupational therapy (OT). Why would a kid need occupational therapy? Because Jude's "job" is to play and OT helps him do this. It involves strengthening his upper body, working on near-to-far movements of the eyes, developing fine and gross motor skills, sensory process development (especially for food and texture aversions), improving self care (putting on and taking off clothes) and Integrated Listening System therapy.
Last summer we traded in our Caravan for a Prius. We get almost 50 miles per gallon (versus 15 in the van). It has saved us a ton on fuel and I really like driving it. But there are unique qualities to Prius drivers. So I bring you ...
You might drive a Prius:
1. If you initially think the nozzle is broken at the gas station when it clicks off at $28 dollars
2. If you need a 3 block gap before you pull out in front of anyone
3. If you pass someone and wonder what's wrong with their full-sized car
4. (the flipside) if you get passed by another Prius and smugly think you're getting better gas mileage than them
5. If you've left your car running in the driveway for more than 3 hours and thought it was off (resetting all previous gas mileage smugness)
These are all true. I still love my Prius. And I love my Jude. No matter how many miles we have left to travel. I'll always be your travel buddy.
Poem to follow shortly ... Time to go pick up my travel buddy from school.
I make a meal for my family almost every night. And almost every night they eat it.
Confession: I don’t like cooking.
Another confession: I almost never use the oven.
What I do like are gimmicky products that help me cook without using said oven.
I love my Micro-Cooker, Round Covered Baker, Pizza Pizazz. I also love my bread maker, popcorn air popper and Stir Daddy popcorn popper. Sadly my George Foreman grill has died. But it’s replaced with a Cuisinart Panini Press (which is simply a classy version of a Foreman grill).
Truly, I’m not happy preparing a meal in my kitchen unless my counter is covered in gadgets plugged in to every outlet, and possibly breaking a circuit. Here's a quick reference guide to my three favorites.
Where did this all start? I have to give credit to my dad. Now, he wasn’t as much into products as he was into creative solutions to meal preparation. I don’t remember my dad cooking much before my mom got sick. But after she passed away, he quickly found ways to feed Luke and I (Stephanie was off to college by then, so she missed out).
Things my dad may have invented but never got paid for:
- Take and Bake Pizza. My dad would stop at Casey’s in Dike, Iowa and ask them to make him a pizza, “But only cook it half way through.” He wanted to bring it home and finish cooking it our oven so it was hot and fresh.
- Krispy Kreme Doughnuts. My dad would make donuts out of the little rolls of biscuits and pop the center out using a twist off pop cap. They were delicious and the house smelled like grease for days.
- Pizza Pockets. My dad once entered a Pillsbury contest after mastering the skill of placing a little ham and cheese inside a flaky biscuit before baking it. We were both shocked that he didn’t win a prize.
So I think my enthusiasm for “cooking” is inspired by him. One time Lucy and I were watching Dan Wardell (our household’s superhero from Iowa Public Television) doing a cooking demonstration. Lucy said, “That’s not how mom does it. She just puts it all in the microwave.” I’ve often said, I wish my house had two or three microwaves so everything could be ready at the same time.
I think this love of gadget cooking is also contagious. Chris recently came home with the Toastabags. Sadly, they didn't fit in our toaster. So we will have to find a new toaster. I will let you know how they turn out.
The unfortunate part about my cooking is that I don’t think anything I cook is tasty. It never tastes good unless someone else cooks it. Chris has come up with a creative solution. I will do the food and gadget preparation. Then he will cook it. This may be my best invention yet.
Here is to all the dad’s who are in the kitchen, with and without their spouses to help. Thanks, dad, for always feeding and inspiring us.
Dear Scott Wolf (aka Bailey Salinger from Party of 5),
I really thought you'd marry me one day. Really. I thought I'd be walking through the mall. You'd be there. Our eyes would meet. And off to Hollywood we'd go together.
Well, I don't know much about your life, but I am the luckiest girl that our paths never crossed. That's because I married the best guy. Period. His name is Chris Corkery. I sometimes call him Kiki. He's my best friend.
Before marrying Chris, we discussed my list of six criteria that were non-negotiable. Every girl should have her own list. My Marriage Pre-Qualification List:
- I need an equal partner.
- I need someone that wants to spend time with me.
- I need someone who will dream with me.
- I need someone who likes to have fun and do exciting things.
- I need someone who has similar beliefs as me.
- I need someone who is willing to help me with stuff.
Chris fit every one. And I'm amazed at almost 10 years later, I can still say they hold true.
This is us on our wedding day. Lucy said, "You got married in a field?!"
Do you know what I see now? 1. Wow, that's a good looking couple. 2. Wow, were we so young and dumb.
I think we were so happy and naive thinking, "This is going to be a blast forever!" And it has been a blast. And also terrifying.
Here would be my Pre-Qualification List today:
- I need someone who is willing to rush home from work when I find my 17-year-old Pomeranian, Keisha, passed away. And someone who also knows it's a big deal.
- I need someone to stand by my side during an emergency c-section and to see his son, grey and not breathing, after he was born.
- I need someone who will wake up at 6:00 a.m. with me to take our toddler to his third MRI in three years.
- I need someone who will listen to doctors explain that our child will never see the world like his sister.
- I need someone who will fly across the country with me to meet doctors and have hard conversations about Jude's long-term potential.
- I need someone who is willing to help me use to the bathroom while recovering from a 7-hour surgery.
- I need someone who is willing to strip my drain tubes at 2 am.
- I need someone who tells me I'm beautiful every day, even when I feel old and tired.
- I need someone who says, "Yes" more often than "No" to my crazy ideas.
- I need someone who likes to have fun, go on dates, travel and laugh no matter what.
Chris still fits every one. Once we were watching the TV show Dexter. Dexter asks a couple (a couple he is about to murder of course) what makes them happy together. They said, "We like the same things." And I do think at its core, that is true of most happy marriages.
Lucy asked me how old will she be when she gets married. I tell her every time - 30. She also thinks she is going to marry Jude. I told her that if she's 30 and still wants to marry Jude, then we will worry about it.
I hope that Lucy and Jude make their own Pre-Qualification lists and that they don't settle for less. I hope they find their "Chris" and have more good times than bad.
They say behind every good man is a great woman. I'd like to say that behind every great woman is an even greater man. And it's not always Scott Wolf.
Always putting others first
Kari Kidrowski was one of my elementary BFFs. We both attended Dunkerton Elementary School. One of the biggest rights of passage back then was the 5th and 6th grade science fair. Everyone had to team up with one or two other kids, pick a topic and present our speech to the junior or senior high kids. So Kari and I paired up to do some research on our topic: Mold.
Kari’s mom is a rock star. She took us to Anderson Erickson Dairy (on her own time) to see how they used cultures to make things like yogurt and cottage cheese. Best of all, Kari’s mom let us grow mold on stuff in jars in her refrigerator. We did it for weeks.
It was very disgusting and very fun. The big day came, and to our surprise Kari and I were the first 5th graders to ever WIN the 5th and 6th grade science fair.
At work recently, we took a personality test to identify our strengths. My top three:
1. Communication – You find it easy to put your thoughts into words.
2. Woo – You love the challenge of meeting new people and winning them over.
3. Competition – You strive to win first place and revel in contests.
I believe #3 all started with the 5th Grade Science fair. The following year, Kari and I had a new area of research. Here’s a photo. The location of Kari’s head makes our G-rated topic look a little more R-rated.
The topic was Glass.
Some time later my mom (another rock star) made a giant crawdad out of a bottle of bleach for another school project for my sister. Oh, if only we had social media in the 80’s - if I had that photo now it would definitely be on one of my Pinterest boards.
My hope for the future:
1. I am the kind of mom who lets my kids grow mold in my fridge for a good cause.
2. I am able to make a bleach bottle into a crawdad if needed.
3. I’m still able to laugh at photos of myself no matter how old I get and that I have many friends to laugh with me.
Thank you Colleen for sharing this photo. L to R: Colleen Magee-Buhler, Me and Stephanie Albertson Pershing.
So much mold
Thinking, talking, winning
Rock Star Helpful Mothers
A few months ago, we got to attend a show written and directed by our talented brother-in-law Jimmy DeVita
. It was called “The Gift of the Magi.” He took a two-page story written by O. Henry about a young married couple and how they deal with a challenge of buying secret Christmas gifts for each other with very little money, and he adapted it into a two-hour musical.
The climax of the show is when the husband is really depressed, realizing he may not afford to get his wife a Christmas gift. A fiddler cheers him up and sings a heartfelt song with the lyrics “There, but for the grace of God, go I.” Jimmy explained it later that it was a complicated scene to write. They didn’t want to imply that God was getting in the way of him buying his wife a gift. But rather, he could just as easily be in a worse situation.
The phrase was originally credited to a preacher, John Bradford, who uttered the words when seeing criminals being led to their death. But the source has never been confirmed.
I was taken aback by the use of this phrase in the show. I heard it a few years ago in a speech, and it just stuck with me—It could always be worse, and it can happen to anyone. To me, it's a reminder to be grateful for what you have in life because it can change in a blink of an eye.
A few days later, we invited Chris’ parents over to our house. Chris was playing a game of Cribbage with his dad. Laurie won several games in a row. And then he said, “But it all could have gone another way. It’s how the cards are cut. One cut differently and Chris would have won.” I love Laurie's humble approach. Because it means the opposite of my quote is also true. When things go well, it's not always because we are the better players in life. Sometimes it just happens.
There, but for the grace of God, go I.
Learning its Beauty
We all Deserve it
Chris and I got to see the “Life of Pi” movie in 3D recently. It’s like a painting coming to life. Beautiful colors and graphics that seem unbelievable. And the story itself is a truly unbelievable tale of a shipwrecked passenger stuck on a lifeboat with a Tiger. I’ve read the book and both are spectacular. And the movie really captures it. If you haven’t read it or seen it – Spoiler Alert.
At the end, he survives this incredible adventure. And no one really believes him. So he tells them a simpler story instead. But, he says, if the outcome is the same in both stories, which story do you prefer?
It got me thinking about heaven. I completely believe in an afterlife. But I’ve never pictured the typical scene where people are reunited with loved ones. I’ve never really believed that I will see my mom again. Kind of depressing. Maybe I’ll die and sense her spirit or a feeling of love in the afterlife, but I never pictured her greeting me, hugging me or loving me again.
But after I saw “Life of Pi” I thought, why not? If it gives me comfort to think that I’ll be greeted in heaven by mom, then that’s what I should believe. It’s the better story. And it doesn’t change any of the outcome. Whether the hereafter is like a movie or not, it will be what it will be. I hope she’s in her bathrobe on a couch, with a book in one hand, a cup of hot coffee nearby, smoking a Parliament.
I don’t know if it’s losing my mom so early, having a child with special needs or having been diagnosed with breast cancer. But I see things a little differently now. The bright moments of life are so much brighter. And the dark colors of life are so much darker.
I see young, fresh parents with so much to gain and so much to lose. I see teenage daughters who can’t stand their moms, but don’t know what a gift they have. I see parents whose biggest wish is for their child to be able to move their hands. I see families brought together and torn apart by tragedy.
But you know–we all keep moving. And try to think of a better story. Because if the ending is the same, the better story is the one I want to believe.
Close at heart
Hoping to see her