Friday, October 16, 2015

Tour de Pink 2015!

Just a quick update: Team Pink and Pearls completed Tour de Pink 2015 and raised nearly $28,000 for the Young Survival Coalition! My personal total as of today (more donations will be coming in from the fundraisers) is $6,155!!!! (More than I raised in 2013).

AND! I completed my first century (100 miles!) on day 2. I took it easy the rest of the weekend, riding only the first 20 (hilly) miles on day 1, and about 30 on day 3. Team Pink and Pearls crossed the finish line together at Rehoboth Beach, DE, early in the day this past Sunday. We were greeted by both sets of parents (Mom Ruth + Lloyd, Becky + Jeff) and little Adele, who wore a tutu and cheered and danced when we rode in!

I will update more later, as it's been a whirlwind (as usual), but I want to say I am so very grateful to have completed this ride a second time, and I am so blessed to have ridden with Team Pink and Pearls - Sean, Dan, Julie, Rob, Sarah, Maddi and Bob - you guys are all amazing and rock stars and I love you!

Tour de Pink 2015 was so rewarding in so many ways. I got to ride with so many of my friends I rode with in 2013 (Evan, Lauren, Ishiuan, Laurie, Team Why We Ride, Team I Ride 4 Her) and met SO many new friends, like the lovely ladies of Team Unicorn, Barbie, Erin, etc. We got to meet the Nickerson twins, whom I had fallen in love with via Facebook. (pics below). It was such an incredible weekend to be surrounded by so many friends and family. The YSC community is so big but so small. The inspiration, the passion, it was all there, exactly how I remember from 2013. People cheering us on, lots of hugs and kisses and crying and smiles. Lots of "you're doing great" and "keep up the good work" and lots of high-fives and "whoop whoops!" I wish I could write more, but for now I'll just post some pics. AGAIN, I AM SO GRATEFUL I COULD ACCOMPLISH THIS CHALLENGE AGAIN.

I also want to recognize one woman who rode last year but who was not with us this year. We miss you, Kara. And also all the women (Ish, Tiffany) who rode this year and are living with metastatic breast cancer. YOU are my inspiration. I ride for YOU.

I wish I could put into words what the Tour de Pink and YSC community means to me. I really wish I could. There is just such a strong love there, that forms in the very beginning, based on absolutely nothing except we're all there together. In 2013 I didn't know anyone I rode with. But within minutes those people changed my life and continue to change my life today. We became a family. Sharing baby pictures, updating each other on our lives, counting down til the next YSC summit or Tour de Pink. That love forms so quickly. There is something unspoken. It can't be explained, only felt. It's crazy to say I feel so much love and connection for so many people (200!) at the same time, in different ways, yet in all the same ways. I really wish I could put it into words what this community and organization has done for me. The men and women who ride. I wish I could. Just, for now, thank you. Thank you, thank you, thank you. For touching my life. For being in my life. For loving me, for loving Adele, for loving Team Pink and Pearls. And to Team Pink and Pearls: thank you for riding with me. That sentence has more depth than it seems. You rode with me and you rode for me. Thank you. (Finish line/beach photos by Lloyd Wolf)

Photo by Lloyd Wolf: Adele at the finish in Rehoboth Beach!

Photo by Lloyd Wolf




Adele with her grandmas!

Friday night dinner: all the survivors who received Liv/Giant bikes!

Crossing the finish line! (Does this pic look familiar to 2013? Yep, same wings and same jersey!)

I did it! Rehoboth Beach for the win!

Lauren and I, and pickles. 

Crossing the finish line with Team Pink and Pearls! That's Maddi up front in the yellow.

Lauren! This woman encouraged me to ride 90 miles in 2013 and 100 in 2015. I love you, Lauren! 

Team Pink and Pearls! From left, Rob, Sarah, Bob, Maddi, Sean, myself, Dan and Julie

Tour de Pink babies! Adele meeting Tessa and Gracie, Jamie and Kevin's gorgeous twin daughters!

FLYING! Picture by Christine Malloy's GoPro!

oh my gosh this moment --- finishing 100 miles on day 2 with Evan, who rode with me pretty much the whole day! He stopped when I wanted to stop and encouraged me to keep it up. This man is amazing. There are no words for Evan!!!!! 

Day 2, first rest stop. Showing off my Tour de Pink tattoo as I mentally prepared myself to ride a century

Final day outfit! Same wings I was given on day 3 in 2013 by Sue, who encouraged me to "fly" and I did! Also my 2013 jersey. Bringing it back, full circle. Wings in 2013 and wings in 2015 to cross the finish line. 

My ID for the weekend. I love it because it has our team name!













Wednesday, October 7, 2015

"It's yours to take"


"It's yours to take"

Those were the words my instructor Chuck spoke during last night's cycling class, my last class before Tour de Pink. We leave Thursday for Philly, and the ride begins on Friday outside of Frazer, PA. We end, on Sunday, in Rehoboth Beach, Delaware. (YOU CAN DONATE TO MY RIDE HERE!) As many of you know, in my first ride in 2013 I did every single mile. Last year, Julie, Dan, Sean and Daniel formed Team Pink and Pearls, named after this very blog, and rode in my honor and in the honor of all other young women fighting, and those who have lost their battles. I didn't ride last year. I decided I need to care for Adele that weekend, then only 4 months old.

Brandon and Adele at the park!


This year I'm riding. For many reasons. First, Adele is older and she'll be watched after by Becky and Jeff throughout the weekend. Secondly, I'll be, for the first time, riding with Sean. A wife-husband opportunity that doesn't come along too often. Thirdly, I'll be riding with a team of 7 other of my close family and friends. Fourthly, I don't plan to ride the whole 250+ miles. I did it once. I proved to myself what I needed to. And now, this year, this coming weekend, I'll do my best, I'll have fun, I'll see my YSC friends and sisters, and I'll SAG out if and when I need to. I'll ENJOY it. It doesn't mean I'm not nervous and it doesn't mean I am not highly anticipating every single thing. I've personally raised more than $6,000 which is more than I raised in 2013. 

If you've been following (pretty religiously) this blog, you'll know much of it focuses (ok, maybe MOST of it) focuses on healing after breast cancer. life after breast cancer. living, LIVING life as a breast cancer survivor, and navigating life as a LFS patient, full-time working mom, wife, etc. So much of it has been about healing, finding myself, healing, getting it all back, proving to myself. Tour de Pink. Those 5Ks and Dirty Girl Mud Run. That half-marathon. 

Playing at Old Main lawn before the Penn State game


When I did Tour de Pink in 2013, there was no doubt that that ride was for me. For me to take my body back. For me to support women like myself. For me to prove I could do it. For me to prove to myself breast cancer didn't take a damn thing. For me to put my face on a challenge that personally meant something to me. For me to have a story to tell. For me to make my mark in a world unknown until then. For me to become part of something bigger than myself, to get the support I needed, for myself. 

This year when I ride I'll ride for fun and friends and the cause. I'll ride alongside two of my best friends in the world, Sean and Julie. 

team jerseys!


When Chuck said those words (there are often many wonderful, inspirational phrases uttered by my instructors in cycling, yoga, TRX, etc.), I bowed my head down like I always do, and I pushed my thighs through hard resistance. I focused on my breathing. This, here, was the height of this particular drill. This is when I use every ounce of energy, tell myself THIS IS MINE TO TAKE, and push. This is when, though steady on a stationary bike, I close my eyes and envision the finish line. But as soon as I closed my eyes, a switch went off. Yes, it's mine to take. But right here, right now, I've already taken it.

Healing, finding myself, proving myself. 

Rosh Hashanah 2015


I needed cycling and running to do it once, but I don't need that anymore. I already have it.

Isn't healing after breast cancer starting a family and working at a job you love and being a mom and raising money for causes you believe in through speaking at events and participating in the community?

It's mine to take, and I took it.

Enjoying the last few days of summer :)


Maybe a few years ago I first needed the physical challenges to take back what I thought I lost. But as I closed my eyes during that challenge last night, I thought to myself, AHHHH I already have it. I already took it.

No matter how well I do this weekend. No matter if I do 12 more half-marathons or zero more half-marathons. I already have it.

Sarah, myself and Maddi at our Gigi's fundraiser Oct. 1. (3/8 of Team Pink and Pearls!)

During a tough physical challenge, whether a bike ride or race or difficult yoga pose, that's when I reach deep inside and tell myself this, whatever THIS is, is mine to take. My body is mine to own, and that I can do anything I believe I can do. And I power through, sweaty and happy and proud and in control.

And last night, yes - I did push and I will always push - last night I realized I already have that thing I'm looking for.

That's not to say you are ever REALLY healed, or ever REALLY "move on" or "get over" breast cancer. You don't. YOU DON'T. And if I'm being honest, I don't know if you ever really figure out how to navigate life after cancer, after multiple cancers, and while living with LFS.

Celebrating Emily's birthday in October!


However, I do know, right now, that whatever it was that was mine to take, I took it. I took it. I have it.

I have a husband, loving family, beautiful daughter, amazing, supportive friends, a phenomenal community near and far, a job I love, and I continue to be involved in efforts important to me - the PA Breast Cancer Coalition, PA Pink Zone and the YSC. 

Emily <3


My life and my life's work IS my healing. 

It doesn't necessarily stop. And it's definitely never done. But this is what it looks like. 

Wednesday, September 16, 2015

Living LFS: Marjorie- 18 Years of Surviving

In honor of September being Childhood Cancer Awareness Month, Living LFS did a profile on me.

Surviving Childhood Cancer can leave quite an impact. Not only are there long term health effects from intense treatments, there are often emotional scars left. Children undergoing treatment miss out on many normal activities and this can shape how they approach the future. Sometimes the things that childhood cancer survivors look forward to the most are basic milestones, birthday celebrations, getting married, having a family.

Marjorie was 12 when she was diagnosed with leukemia. After 3 years of chemo, she finally had the chance to get back to normal and was about to start the next chapter in her life, marriage when she was diagnosed with Breast cancer. She got married and is now in the midst of her greatest adventure to date- Parenthood.  We will hear some more from Marjorie next month about Breast Cancer, wedding planning and how she approached starting a family after multiple cancers.  Marjorie is a childhood cancer survivor, a blogger, a wife, an advocate and now mom.  Read more!







Tuesday, September 1, 2015

Scanxiety, early and often

Scanxiety = anxiety about scans, (MRI, etc.) particularly if you've had cancer. Scanxiety happens any time a scan is coming up. It can happen months before a scan, or hours before. It also happens AFTER the scan while you await the results.

For me, scanxiety happens early and it happens often. Today is Sept. 1. In November I have my annual breast MRI. In December I have NIH clinic, where I receive a full body and brain MRI.

Scanxiety is happening now.

It doesn't matter how many years out from cancer you are. It doesn't matter if you have back-to-back clean, NED (no evidence of disease) scans. Scanxiety is always, always there. 

And in my opinion and experience, it becomes worse (if it can possibly be worse) when you're a mom. Because the scan isn't just for you anymore. And it's not just for your family. (Your spouse). The scan is for your child. 

On Sept. 12 I will celebrate 18 years (EIGHTEEN YEARS) since my Leukemia diagnosis. I have less anxiety about blood work because I get it every four months, and anything weird that shows up is dealt with ASAP. 

But SCANS. 

Scanxiety. Because you don't, and can't possibly, know what, if anything will show up on an MRI. Anything is something, and something is something, and although sometimes something is nothing, something is something when it comes to rocking your world for however long it takes to figure out that something is nothing. 

In April I'll celebrate five years since my breast cancer diagnosis. But April is SOOOOOO far away. I can't possibly look to April or get excited about April. It's too far away. I'm not yet able to say "almost five years" out from breast cancer. Not until March. 

For now we concentrate on Sept. 12. And the 18-year mark. Because that is something big. 



Just because scanxiety is normal and expected doesn't make it any easier. So I talk about it in therapy, and I post about it in my Facebook LFS support groups. Because they all get it. Of course, I'm not going to sit over here and stew in my worry for the next two months. But scanxiety has appeared, and it will be here, on and off, through December. It's just part of life. It's part of LFS. 

Scans have to be done, and I wouldn't have it any other way. I am lucky to be in the NIH study. I am lucky Dr. Kass continues to do my breast MRIs once a year even though most breast cancer patients five years out get them less often. But then again, I am not most breast cancer patients, or most cancer patients or most patients. 

I have LFS and I have scanxiety. And the most and best I can do is just embrace it, power through it, have faith, and above all, realize that absolutely none of this is in my control. 

Monday, August 24, 2015

Letting the structure fall


Adele has been getting really good at building with blocks. Yesterday she had put together a very tall tower and kept adding little blocks at the top. Obviously, you and I know a successful tower requires a strong structure. Adele is just learning this, and hasn’t quite mastered that technique yet. So as she kept adding to the top, the tower got more fragile and less steady. I kept holding it up for her so she could keep adding more blocks. It swayed and swayed and came close to breaking. But I held it up. I didn’t want her to get disappointed when it fell over. And eventually, I couldn’t hold it up anymore. And more than that, I let it fall. I wanted to see how she would react. I wanted her to know that sometimes things fall down. I wanted her to see what happens to her block tower if it gets too tall. So I let it fall.

She stared at it for a minute and then went right back to building.



Sometimes I have to remind myself I can’t always hold everything up, all the time. Sometimes things fall. And sometimes that’s OK.

I don’t usually help Adele unless she needs it or asks for it. She feeds herself, takes out and puts away her toys. She knows what food and drink she wants, and how to ask for it. She knows how to wash her hands, including rubbing her hands together with soap, drying off with a paper towel and throwing the towel in the trash. She knows how to brush her teeth (kind of) and her hair (kind of). Unless she needs help putting her dollie’s tiara on the dollie’s head, or winding up the toy caterpillar, or, after much trying, getting the proper shape into the proper hole or the puzzle piece in just right, I don’t help her. I wait until she asks for help.


My big girl enjoying an almond butter + jam sandwich!

As a mommy I want to protect her from everything. That’s why letting her go down the slide by herself this past weekend was a huge step for both of us. She does so much on her own, including running around the playground, climbing up what’s age appropriate, and gallivanting around the house with her toys and Campbell. She even got a little ride by Sean in her tricycle; her feet can’t touch the pedals yet, but as I saw her sitting there, hands on the handle bars, I knew – in only a few months – I am going to have minor panic attacks as she learns to ride, and all over again (like when she started crawling and then walking), want to bubble tape her body.

Adele and Claire at Claire's 2nd birthday party

But I know, as a mommy, I have to her let see what happens when the blocks fall down. I can’t predict every fall or tumble. I try to, but I can’t. And sometimes she falls down. And she brushes herself right off and keeps on going. If it’s a minor stumble, I ask, “are you OK?” and she says “yeah” and stands right back up and moves on to the next activity. If it's a bigger tumble, one that ends in tears or shock, I scoop her right up and kiss her boo-boo until she forgets about it. The more she walks and tumbles, the more I realize she (I) am going to be OK. She's fast on her feet and I can't predict every move. And that's OK. 

It’s OK to let her blocks tumble because she needs to learn how to build a good tower.

Aunt Julie and Adele <3


For so long I have felt like I try to keep every single tower from falling, and it’s a hard job. I juggle a lot as a full-time working mom of a toddler. And not only is it being a mommy and working, it’s all of our activities and plans. It’s training for Tour de Pink. It’s being on the boards and committees of Pink Zone, Hadassah and Discovery Space. It’s blogging (when I have the time). It’s maintaining friendships and relationships, near and far. It’s continuing to share my story and promote awareness about breast cancer in young women, and now Li Fraumeni Syndrome, and now adoption. But it all serves me. I may seem busy, and I AM. But I choose the activities that serve me, and I remove that ones that don’t.

toddler swim with Melissa and Brandon!

Yes I am training for Tour de Pink, and this past weekend I went out on a 20 mile bike ride by myself. And I loved it. I enjoyed it. It was my time away. My alone time.

Two years ago when I was training for my first Tour de Pink I would get nervous and anxious about every bike ride, almost dreading it because of the amount of pressure I put on myself. Now, today, I enjoy the ride. My last ride before yesterday was in the beginning of July, more than a month and a half ago. But I’m OK with that. No pressure. I ride when I can and I ride when I want. Tour de Pink isn’t the most important thing. My family and my well-being is. Adele comes first.

Tara and Duff's engagement party! We are so excited for our friends!

I’ve learned how to not feel overwhelmed by all my activities by not LETTING myself get overwhelmed by all my activities. I don’t think twice about saying “no” or canceling a cycling class I booked. I do what serves me.

Friday night live music at Happy Valley Winery

Friday night live music at Happy Valley Winery

That being said, I do feel like I have to keep all these towers together. I put a lot of pressure on myself, not to be perfect, but to be close to it. To make healthy meals every night for Adele. But sometimes we get Chinese food. To work out a few times a week. But sometimes it’s more like once a month.

I don’t need every structure to stand tall all the time. As long as most of them are somewhat standing, albeit swaying, it’s OK. Most have a good, strong foundation, in that the intention is good. The intention is pure.

The intention is I don’t want to disappoint Adele. But I also want her to learn how to build. How to make a good foundation, and what makes a good, strong, stable tower. And she can only learn that by seeing, sometimes, those blocks fall.

Fun at the park! (With a Tour de Pink water bottle!)

And for me, as a woman who wears all these different hats – wife, mom, working mom, cancer survivor – it’s great that all these towers have good foundations, and it’s great I want to keep them all standing. But I’m only one person. And I have to learn, too, what makes a good strong tower, what makes multiple good, strong towers. What makes a good, strong woman. For me, it is sometimes, just sometimes, allowing the structure to fall, and knowing it’s really, truly not the end of the world when it does.

Blowing bubbles at Ryan's 6th birthday party!

We are all truly soaking up these last few weeks of summer with plenty of parties and play dates and trips to the park and the pool. It’s been an amazing summer now that Adele can play outside with friends. The campfires and time with neighbors is never-ending. It’s been an amazing summer as Adele is growing so fast and learning so many new things. She loves the playground and sings in the stroller when we go on walks. She knows how to put sunscreen on herself (and her dollie, and mommy), and knows to ask for her hat when we go outside. Every day is such a joy with her, as she discovers more of her world. And my heart sings when she “takes care” of her dollie and lovies – kisses them, and “feeds” them with the toy bottles. I wish I could find the words to describe what that’s like, to see your daughter, without any prompting, just pick up her doll, cradle it, and kiss its forehead. If it was my heart singing it would be the loudest most joyful song. It would be my heart climbing to the tallest rooftop in the world and singing as loud as it possibly can. The joy is indescribable.

Enjoying crackers and hummus at Claire's birthday party



All of Adele is. All of being a mom is. It’s more amazing every day. It’s different every day. It’s the hardest, most rewarding job of all. It’s the best, best thing.

Adele and Nicole at Wiscoy for Animals' doggie ice cream social


Thursday, July 2, 2015

Antennas up

This may have been my longest stretch of not writing. So this is an update with LOTS of pictures.
It's been a crazy past few months. Since I've blogged, we had Adele's baby naming, and then the unexpected deaths of three of our grandmothers within a few weeks of each other: Nana Stromberg at the end of May, Bubby Sara Dembowski, on June 14, and grandma Rochelle Miller just three days later.

From left: Nana, Rochelle and Sara

So the day after Adele's baby naming in Warminster, Sean and I flew to Buffalo, NY for Nana's funeral. Bubby passed away about two weeks later, and then Grandma Rochelle three days after that. There really are no words for how to describe these past few weeks. My heart breaks for all of our families. We honor their legacies, we honor their names, we honor their lives. They all lived long and fulfilling lives. They all left so much love in their paths. Love that will be carried on and built upon. Nataline, Sara and Rochelle, we will miss you. Please rest in peace knowing the beautiful families you created.

Me and Bubby Sara at our wedding, March 31, 2012

Adele's baby naming was beautiful and we were so blessed to be surrounded by friends and family to share in our special day. Adele is doing BEAUTIFULLY! she walks now! Just as my love for her grows each day in new ways, my love for being a mother grows each day in new ways. The rewards are endless. She is such a PERSON.

This face!

"Partini" with Emily <3

Going for a walk in the park with Melissa and Brandon

I wish I could just list all of the ways in which she continues to grow, but it would be impossible. I try to savor each moment, soak it all in. This morning as I was getting her dressed, she was just walking around her room with her bottle, flipping through Amelia Bedelia (her new favorite book; she tries to say "Bedelia" and it is THE CUTEST THING EVER), and I just watched her toddle around with her chubby thighs, half dressed. (How many Weight Watchers activity points do you get for dressing a toddler? It should be a lot.) We weren't in a rush, so I just let her toddle around her room, looking at her toys, and I just watched her and talked to her and smiled at her. I am always in awe of her.

When in Chicago ...

When Sean and I get dressed in the morning we put her in her Pack N' Play in our bedroom so she can play with her toys and we can keep an eye on her without her roaming around. This morning I was putting on my makeup and I didn't hear anything from her in the next room (she always talks or sings really loudly) so I quietly peeked my head around the door and saw her leaning in to kiss her Violet (purple talking dog stuffed animal.) MY HEART LITERALLY EXPLODED. Just silently, she leaned over to give her lovey a kiss, without knowing I was watching.


A precious moment captured by Lloyd

Adele and Brandon

Joel, Adele and Avi, in Warminster, PA for Bubby's funeral

It's these tiny moments where my heart just feels so full. Like I can't believe this is my daughter.
Now when I'm getting dressed in the morning I take her into my closet. She likes to look at my clothes and try on my jewelry. She does whatever Mom does. She wants to brush her hair like I brush my hair.
She follows Campbell around trying to give him his bones. She looks at me before she reaches for something she's unsure if she's allowed to have, and I reassure her it's OK to pick it up, or no, it's not OK. She knows when to wash her hands when we enter her classroom. She knows how to turn on the faucet. She likes when I brush her teeth. She likes her Amoxicillin to the point where she asks for more when it's gone. I cannot believe this little person is my daughter. I am in AWE. Every single day.

Me and Sally! On left, when our friendship began in the 1st grade, on right, us in Chicago last weekend! Friends for 22 years is something special! :)

Chicago selfie!
With the joyous awe and amazement comes all new new-mom panicking as she's learning to walk and is taking more tumbles. She is pretty steady on her feet, and I am slowly learning how to let myself go into the next room while watching her toddle around. This morning I was washing something in the sink and watching her in the living room with her walker, and I didn't take my eyes off her curly little pigtails at the top of her head, which I saw just peeking over the couch. I knew if her pigtails were up, she was still standing. I'm learning to let her go a little more and not be literally on top of her every move. She is moving wonderfully, and I know, like all other things, this will take time for me to get used to. I'm getting there and she's getting there.
Sean and I have been busy with work and social plans and fundraising for Team Pink and Pearls. We've already had three successful fundraisers, and two more are on the horizon, including Yoga on the Mountain, which I'll include more about at another time - but you can find out more on the fundraising page on this blog!

Enjoying a night out in Chicago xo

Adele playing with Legos at Barnes and Noble

These pictures are from the last few weeks, including my weekend trip to Chicago to visit Sally (last weekend), some pics from when my mom and Lloyd came to visit and we took a trip to the Arboretum and story time at Barnes and Noble, and just some other odds and ends.
We are all healthy and happy. We are all OK.

Buckingham Fountain, Chicago

Adele's baby naming!

Storytime at Barnes and Noble

I want to give a HUGE congratulations to my best friend Karishma who recently got engaged! I am so excited for you and Mike and I CANNOT WAIT to begin the wedding/planning/festivities/OMG! And I want to wish Sean a happy second Father's Day. Sean: you also continue to amaze me. I am in awe of you as well. Every day I am blessed to see firsthand how much you love our family. How much you love and care for Adele, for me and for Campbell, and for your parents and siblings. You take care of us all. I see the way you look at Adele. It is the same way I look at her. I constantly think there is no way anyone could know my love for her, the way my heart feels when I see her face or hear her talk. But when I see you look at her, I know you know. You share that same feeling. Just as I am in awe of her, every little piece of her, so are you. Your love for Adele is palpable. It is bursting. The way mine is.




I am just in awe of it all. In awe of this life. I am, again, after these recent deaths, aware of how precious life is. Of how I already imagined my life as this fragile faberge egg, but now it feels even more fragile. With Adele walking and the recent deaths, my alerts (which were already pretty high), are on higher for now. And I know that's OK. My antennas are up more. I'm more on edge. I have a walking baby and we lost three family members. But I know things will settle back down to the "normal crazy." Until then I think it's OK I'm on high alert, I'm a little more sensitive, a little more panicky. More anxiety. It's OK. A lot is happening.


pink roses at the Arboretum
Change is the only constant in life. 
Photos by me