Tuesday, August 20, 2013

Ring Around the Rosie

Ring-a-round the rosie,
A pocket full of posies,
Ashes! Ashes!
We all fall down.

There are a lot of interpretations of this little nursery rhyme.  Today, I want to share with you mine.  And let you in on what the past few months have looked like.

First of all, let me say, that my health is great.  I am feeling strong and lift weights at the gym 3 times a week.  I am running and pushing myself further than I ever have.  In fact, this weekend will mark my first 10-Mile race when I run in the Crim in Flint.  I'm not going to break any records, but I am most excited to say I was able to finish.  The side effects of Tamoxifen are minimal (except I am so flippin hot - but that's another story) and my heart's ejection fraction is stable and I was able to go off all medication for that treatment. I am getting to be the mom that I always wanted to be.  I am challenged at work.  And I LOVE spending time with my husband.



Wasting away again in Margaritaville (at Buffet in Detroit)
Sunday Funday in South Haven.
But my own health is being clouded by watching so many dear friends near me not have the same fortune. It's been a tough summer for my Young Survivor Support Group.  First, a little history....

About a year ago, Lori Ostreko and Lindsay Pavey formed a support group in West Michigan for women that are affected by breast cancer - with an emphasis on Young Survivorship.  It's an opportunity to talk about the things that primarily affect us: Marriage.  Fertility.  Finances.  Raising children.  Attending soccer games with drains hanging out of your jacket.  Reconstruction while dating.  Things that you don't find in many breast cancer support groups because those are not concerns that the "traditional patient" faces. For more on the history of our group, read this amazing news article that was just published a few months ago: Young Breast Friends
Our gorgeous leaders: Lindsay Pavey and Lori Ostreko
Naturally, the group didn't just provide tips and support (although they certainly did - how to draw eyebrows, Cool Pillows, etc), but genuine friendships were formed.  And the bonds run deep since these women not only understand the journey I was on, but they lived through it.  They have lost their hair at age 28.  They have had their boobs taken away.  They are dealing with menopause and infertility and friendships that don't survive a cancer diagnosis.  For six months, I looked forward to meeting my friends every month and hearing about all of their fantastic accomplishments.

And then..."they all fall down."

It started in May, when my beautiful friend Amelia found out that her cancer was back in her liver.  It didn't make sense; Amelia had never stopped chemotherapy because of the aggressive form and progression of her original diagnosis in February 2011. She followed all of the doctor's orders and was doing everything she could to get herself physically strong again!  We ran the River Bank Run 10K together in May; and then two weeks later, she found out her cancer was back.


May 2013 - River Bank Run.
Me, Amelia (Stage IV fighter), Jori (Stage IV fighter) and Lori (almost 5-year survivor!)...and Judson

We rallied around Amelia in Young Breast Friend fashion; we flocked to lunch together to be there as support for her.  Jori, Ingrid (another amazing survivor) and me were all together at lunch, a few days after Amelia's first news, when she got the phone call that had the second set of news.  The cancer wasn't just in Amelia's liver; but it was in her bones too.

All three of us at lunch had received our own diagnosis on the phone.  So we could relate to the "I can't believe this is happening/my heart is in my stomach/how am I going to tell my husband and parents" feelings. But it was gut-wrenching to sit there and watch and not be able to fix it.  So we were just there for her.  We took Amelia to her husband, Timm, so she could tell him the news.  When I left Amelia that day, I just cried for her.  I cried because it's unfair and she is so amazing and faithful and doesn't deserve this.  And because she deserves a break from cancer since it has been so prevalent for the past two years.  And not only did Amelia not get that break, but now she is addressing the metastasis to her brain. 

The beautiful Amelia.
We couldn't fix Amelia and make her feel better, so we did what we knew how to do.  We e-mailed.  We messaged Amelia.  We sent cards and care packages and tried to let Amelia know we were there for her.  And everything was okay...for a month.

And then it happened again.  We got the terrible news that Lindsay, one of our group founders, also had a recurrence.  Lindsay had been having excruciating pain in her abdomen; so much so, that a few initial doctors thought she had gallstones.  But scans revealed that Lindsay had a mass in her abdomen: cancer on her pancreas/small intestine/liver.  

Cutie cute: Lindsay and her husband, Carter, pre-cancer diagnosis

Lindsay, Carter, and their little fur babies: Boris and Olive

And so, we watched as Lindsay had her port placed back in her chest and started her new chemo regimen.  Just to add complications to the matter, Lindsay's new cancer, which is still breast cancer, is a different type than her original breast cancer diagnosis.  Our hearts ached again at having to see Lindsay, the optimistic cheerleader of our group, have to go through the pounding of chemotherapy again.  But we started mailing cards.  We gave care packages.  And we joined her at chemo when we could.


Ashes! Ashes!


We all fall down

Our group was feeling battered and bruised.  There are only 10-12 of us at every group meeting and now three girls were facing recurrence (one of our friends is also in a tough fight and I can't wait to tell you her inspiring story...as soon as I get permission to do it!).  It was right around this time that another friend, Ingrid, finally convinced her doctors to investigate a "bump" that had been bothering her for months.  Although she was told she was cancer free, several times, Ingrid continued to bring up the issue to her surgeon; her oncologist; the PA; the nurse, etc.  And finally, the ultrasound was done.  Which led to the biopsy.  And then Ingrid got the call - the cancer was positive in her lymph node.  And my thought was, "Are you freaking kidding me?"

Ingrid and her adorable daughter, Neve, during treatment.

Ingrid - during her amazing six-week tour of the Great West in Summer 2013.


These are young, active, amazing women.  It doesn't make sense. There is no rhyme or reason.  Amelia attacked her cancer with physical activity.  Lindsay cut out meat and started living a vegetarian/vegan lifestyle.  Ingrid is a professor of science movement - she teaches people how to be gym teachers - her life is activity!  

Ashes! Ashes!


We all fall down

The story could stop there.  We could all fall down.  Our little group could collapse upon itself and spend time mourning that these are our stories to tell.  This is our journey to walk.

But that's not what is happening.

Instead, we are rallying.

Don't get me wrong.  Amelia, Lindsay and Ingrid have to do the heavy lifting.  They are having chemo again.  They are facing radiation.  They will deal with the side effects all over.  The peeling skin.  The hot flashes.  The days off work.  The overwhelming fatigue.

But this time, while they face their uphill battle, we are right by their side.  It's all we know how to do.  We will make dinners.  And send cards.  And give hugs.  "Eight positive touches a day" - that what Ingrid asked us to do.  We will join them at chemo and radiation.  We plan lunches.  We get together with our husbands.  And our kids.  And we make our husbands get together. 

We do all fall down.  But what amazes me about these women is their RESILIENCY to get back up.  Again.  And again. And again.  Facing cancer once time is devastating.  But from what I see, over here on the sidelines, is that these three are just PISSED OFF.  They want their lives back.  And they deserve them back.  Amelia and Timm need to plan sailing trips all around the world.  Lindsay and Carter need to continue to explore the Caribbean and host really fun parties at their house.  Ingrid and Nick need to take their girls on a six-week vacation every summer because it's an amazing opportunity. 


ASHES, ASHES, 
They get back up again.
And again.
And again. 
Because they are Young Survivors.  And my Breast Friends.


2 comments:

  1. In tears. Thank you for telling the story. It is brutal and beautiful all wrapped up into one.

    ReplyDelete
  2. Your story here is uplifting in that you are all so devoted to caring for each other. But it is also so very sad to see your friends dealing with recurrence. I'm so happy that you finally connected with Lorie Ostreko. I just knew that you two would become good friends. Congrats on running 10 miles!
    Elise Roe

    ReplyDelete