Scanxiety

I am pretty excited to breathe a sigh of relief.  My prayers were answered and I am able to head into the Holidays with ... Finally some good news to share.

I had my very first PET after starting treatment.  Holy cow....They sure are right about "Scanxiety."

Those 24 hours of waiting felt like an eternity.  I hoped and prayed things were better.  I cannot feel my tumor anymore (was the size of a walnut), so of course my treatment was working.....but there was still that terrifying thought that it had spread elsewhere.  Here is a summary of my PET Scan:

1.  Interval resolution of the soft tissue mass at the inferior medial right breast with no residual FDG uptake within the lesion.  Also, there has been interval resolution of the FDG uptake that was seen throughout the spine and pelvis on prior exam.  Multiple sclerotic lesions are now seen scattered throughout the spin and pelvis consistent with treated osseous metastatic disease.  This is favorable progress compared to prior study.

2.  No lymphadenopathy identified.  No solid organ abnormality identified.

My soon to be Sister In Law Erin so graciously offered to be late to class to be there when I got my results.  She was there with me to hold my hand the afternoon I heard the horrific words Breast Cancer and she was there to hear the "Fabulous" news from my oncologist last Thursday.  There were definitely tears this day, but only ones of relief and happiness.

As I have described to friends and family, my cancer is not gone.  I am heading into remission and we can just hope that my cells remain dormant.  I will continue with the same treatment:  Menopause (brought on by a medication called Zoladex) and Tamoxifen.  Everyone differs, some stage 4 women only get a couple months out of Tamoxifen, some can get a couple years before their cancer becomes resistant.  We will just wait and see what mine decides to do.  Fingers crossed I have "stupid" cancer cells.  Hopefully they just cannot figure out how to survive without those hormones.  I will have my next scan in March.  She also draws "tumor markers" at my monthly visits, but that is not entirely accurate when it comes to resistance to medications.

I have learned a whole heck of a lot about Breast Cancer in these past few months.  I have joined many support groups where other young, vibrant, beautiful women are going through the same crap. Women in their 20's who aren't ever able to have babies of their own, Women who have young children just like me, Women who are very sick, women who are thriving with Stage 4.  In this short period of time I have already witnessed some of these beautiful woman lose their lives to this beast.  It makes me so so angry.  It only fuels my passion to kick cancer's ass and to advocate for those who cannot.  Who knows....maybe I will travel the world one day and scream from the mountain tops that STAGE 4 Breast Cancer NEEDS MORE!

I am once again, so incredibly thankful for each of you.  Thank you for all of the love.  We are so blessed.  The power of prayer is definitely a real thing, Thank you to everyone who prayed so very hard.  God blessed me with "stupid" cancer cells :)

love to all....Erin

Halloween 2016

Halloween 2016

I have decided to not think about things like "could this be my last holiday"

I want to just live and not have that looming in the back of my mind.
I know a lot of women with stage 4 live in this fear, I refuse to let that take over my mind.  None of us are guaranteed tomorrow.  ALL of us should celebrate these Holidays like they are our last.

So of course we had a wonderful time celebrating Halloween this year as we would have in the past.

Halloween this year....The kiddos had a blast.

I randomly shopped the aisles at Target on Halloween and decided to be a wicked witch.  I went from not planning on dressing up to painting my face green and adding obnoxiously ginormous fake eyelashes along with a witches hat and cape.  

The best was when I picked up the kiddos at daycare!  Harrison loved it!  

He just smiled....he still knew it was me :)  I may have scared the SH*T out of one of the other little boys however.  Oops.

We continued with the tradition of hanging out with friends before trick or treating with pizza and adult cocktails!

And of course we went back to our old neighborhood to trick or treat.

Seriously this girl ROCKED her Cruella DeVille costume.  I will recommend to other Moms out there....patten leather heels for trick or treating in MN is NOT a good idea.  This poor girl learned a very important lesson:  high heels sure are cute...but dang they hurt by the end of the night.

And here is Carter as Rafael the Ninja Turtle.  He saw this costume in the window and knew this was who he wanted to be.  I tried oh so hard to get him to be a Dalmatian also.  I think the days of Mom telling him what he will be are over :)

Miss Lily....Too Cute!

Nana with Turbo.

Baby Tobin as a lumber jack.  So stinkin cute

The crew

Dalmatian on the loose!

Mommy and her babe

we had fun painting our face after Carter got home from school!

I think this is by far one of my favorite pictures EVER.  Harrison was NOT excited about his cute little outfit.

And one more of Cruella.  Seriously so cute!

Halloween 2016 will go down in the memory books.  Can't wait to celebrate MANY more with these munchkins.

(I HAVE to be here for next year....because like a crazy lady I already have the theme planned)  

Heigh-Ho Heigh-Ho It's off to work I go

Well it has been a busy couple weeks for us here in the Remme House.  I officially went back to work last week (November 14th).  10 whole weeks after I was officially diagnosed with the C WORD.

But let me tell you....I am not like the average person who cringes when you say the word...WORK.

I am learning I am one of those lucky ones....you know one of those people who actually LOVES their work.

And by LOVES my work, I mean, I LOVE my peeps.

I am blessed.  I work at an amazing place called Maple Grove Hospital.  I am surrounded by fantastic, loving, dedicated, compassionate, caring people.

I found this awesome quote by Deborah Day....

"Encourage, lift and strengthen one another.  For the positive energy spread to one will be felt by us all."

The support that we have received from this special place has been exponential.  I have to share the TWO....yes TWO pumpkins that were submitted to our annual pumpkin contest.

One came with Jo Jo Gaines Ship Lap and All.  :)

The girls even did some research and added a ribbon that represents Stage 4 Metastatic Breast Cancer.  I couldn't even believe it when I saw this!

And then came another one!  

My education team decorated this awesome pink, glamorous, spectacular pumpkin!!!

And lets not forget about my office the day I came back.

My sister in law may or may not have had something to do with this.  And my Brother may or may not have had something to do with the GIGANTIC unicorn balloon!

That morning I walked up the stairwell to my office, thinking.....the last time I was here I dropped everything because of a lump I found.  How could life be so drastically different 2 1/2 months later.  A strange feeling came over me....a feeling of uncertainty, saddness and despair.  I couldn't help but wish that I was just back to "normal" (you know those pre-cancer days).

I opened my office door and was instantly met with love, kindness, hope, faith, courage and support.  Those "icky" feelings (I like to call them) were all of a sudden a thing of the past.  My tears were flowing.  I read each and every sweet message from everyone.  And then I went to read the daily devotion that was left there for me.  Here is a little exert:

Pray Big. Think Big.  Believe Big.  

"Because of your faith, you will be heard."  You bring to yourself what you believe.

Really?  How perfect was that....and no lie.....it was from November 14th.

For those of you who ask for an update:  I will be working 3 days a week as the Educator for the Family Birth Center.  It is a wonderful combo of getting time at home with my babies and spending some time in "adult" land surrounded by awesome people :)

I of course need to maintain my benefits (now more than ever), but I truly believe that for my own health and sanity, keeping my mind busy and feeling a sense of normalcy will help me heal.

Last but definitely not least my coworkers have once again gone above and beyond by Rallying for the Remme's.  A special coworker has signed up each week to love on us.  

This has been based off of the 5 love languages:

Receiving Gifts

Quality Time

Words of Affirmation

Acts of Service

Physical Touch

I have received a prayer shawl, a sign made especially for me stating "She Believed She Could and So She Did," an angel of courage, an awesome cookbook, a great daily devotional via CD, an amazing glittery faith sign, beautiful flowers on my birthday and so many more creative and amazing things.

I have spent time with each individual, whether at coffee, during lunch or on a walk.  They have also come to baby sit our kiddos while Josh and I spend some quality time at dinner.  

Seriously......How can I be so lucky.  Lucky to have such amazing people in my life.  I am blessed.

Blessed with a great support system.

Thank you.

Thank you Maple Grove for making it "easy" to come back to "work"

Thank you for loving us

Thank you for your prayers

Thank you for just being you

Accepting Grace

I was gifted an amazing book, Hoping for More, by Deanna A. Thompson, a religion professor at Hamline University.  8 years ago she was diagnosed with Stage IV breast cancer.

The day I found out I was stage IV, I received a phone call from a number I didn't recognize.  Pre-Cancer days I would have just waited to see if they left a voicemail and call back if deemed necessary.  Well....now with all of the clinics/results blah blah blah I was answering every random number just in case someone was calling me to say this was all some big mix-up.  (just a little bit of wishful thinking).

Well this call, on a particularly crappy day....was from our church.  It was as if God knew I needed that call right then and there.  Our minister of spiritual care was on the line.  She asked if this was an ok time to talk.  I was balling, but said yes....  She proceeded to tell me that someone had submitted my name into the prayer requests and was calling to get permission to add my name to the bulletin/weekly prayers and to check in with myself and my family.  She knew I had been diagnosed with breast cancer, but very few at this point knew the stage IV information.

I lost it.  The tears wouldn't stop.  She was so sweet, and helpful and wonderful.  I asked her a lot of questions about what her experience has been with people that were passing away from cancer, and if they were at peace, and if they were scared etc.  My mind was racing, and she was there, she was there to calm my nerves and remind me God has this, God is here and God isn't going anywhere.

She proceeded to tell me she has a dear friend that is a religion professor who is currently living with Stage IV breast cancer.  She said she wrote a book about her experience.  The one thing I very much remember from the conversation was that this woman was still alive 8 YEARS after she was diagnosed.

HOPE.

Hope is a funny word.  You don't really think about it until you NEED it.  There are little glimmers of HOPE everywhere.  You just have to keep your heart and mind open to it.  If you close either of those off....you won't see those glimmers.

Well, fast forward a couple weeks.  A sweet sweet friend of mine (who has the most genuine caring heart) remembered the name of this book after her and I had talked about it and ordered it for me!   AND I received an amazing package in the mail from our Minister of Spiritual Care.  In it was the book also!!  I couldn't bring myself to read it however.  I for some reason was afraid of what I might find behind the cover.

 I am a member of a Stage IV Metastatic Breast Cancer group for Women under 40.  I have found if I get too much information, or hear negative stories about how Cancer has ruined lives I deviate from myself....I get scared and negative and that just isn't me.  Well, I was scared that this book would do the same.  I would hear someone else's story about how Cancer has ruined them.

I was so very wrong.  Deanna has done such a wonderful job of capturing the struggles of a Stage IV diagnosis.  She talks about her own Faith and her experience as a Mother/Wife/Daughter who has been dealt this card in life.

My purpose for this particular blog post....

I think one of the MOST difficult things for me these past 2 months has been accepting grace.  Deanna talks a lot about this struggle as well.  I truly do not even know how to explain to you how much the donations, gestures, help, messages, hugs, phone calls, gifts and prayers have meant.  I have learned that without this Grace, we wouldn't be here functioning the way we are today.  We are surrounded by so much love and we are so thankful for this grace.

It is extremely difficult to go from the person who is always the one "planning" or "giving" to the person who is accepting such grace.

My husband (the laid back, says it how it is type) reminds me, "if you weren't a kind person, these people wouldn't want to do this for you."  (Pretty much his way of saying, stop worrying about accepting these gifts and understand they are doing this because they love you).

Cancer does some crazy things.

Most obvious is cancer will cause physical pain and changes in your body.  I am reminded of this when I feel the aches and pains in my bones.

Cancer can make people treat you differently (both good and bad).  I am starting to learn this as well.  Thankfully MOST of my interactions are all amazing and good!  And those bad interactions....well I am learning quickly that my energy should be focused on kicking Cancer's Ass instead of worrying about those interactions.  My energy should be for the people who rock our world with their AMAZING-NESS!

But honestly, the best thing about Cancer (which don't get me wrong I would rather have it gone than have to learn this particular lesson) is I have been able to receive such Grace from people.  People we know, people we don't know, people who just have kind hearts and want to give.  

I have a copy of Deanna's book for you to borrow if you would like.  It is an amazing glimpse into one's struggle with Faith, accepting grace and the journey of a Cancer diagnosis.

I will leave you with this....a quote from the chapter Grace Amidst Ruins:

"While no one or no thing could alleviate the pain, the grief, or disorientation cancer brought to our lives, each of these persons and each of these gifts ushered glimpses of grace into the Advent darkness."  - Deanna A. Thompson (Hoping for More)

Another Fun Fall Weekend

Friday night we had friends over for an impromptu pizza night!  It was incredibly relaxing for Josh and I.  I had laid Harrison down for a late afternoon nap and he didn't get up until the next morning!  So we enjoyed our adult conversations while Harrison snooooozed away and the older kiddos played in basement.  Harrison has been nicknamed Turbo and Zooooom Baby.  He is always on the go and is constantly getting into something.  So we missed his company on Friday night, but it was oh so relaxing for Mommy and Daddy :)

Saturday Carter and Daddy had hockey early in the morning and then we all headed down to Lakeville as a Fam to my Grandma and Grandpa's Farm.  It was my Grandpa's 81st Birthday!  Reese and Carter were outside exploring all the farm has to offer all afternoon and Harrison LOVED the cows.  They loved him too (I think they thought we were going to feed them).  

                               

Sweet Sweet Baby Ella
(My cousin Kelly's little girl)  She was all dressed up for Halloween with her pumpkin and tutu!

My coworker Justine has given me 5 gifts this week.  (Based off of the book The 5 Love Languages)  One of her gifts was to watch our babies on Saturday night.  (The gift of service)

She came with her goody bag with all sorts of Halloween crafts and had a blast with the kids.  Carter and Reese can't stop talking about all of the fun they had!

Josh and I had dinner with friends at The River Inn in Hanover.  MMMMMmmm always so yummy.  It was a nice date night.  We haven't really had one since my diagnosis, so it was a much needed night out!

Last but definitely not least we spent Sunday afternoon at 101 Market.

My very sweet friend Britt gave us tickets for a fun afternoon, and Jackie and Dean joined us. 

Bahahaha this makes me giggle.  My superhero kiddos.  Harrison thought this was pretty neat.  Peek a Boo!

Of course having some fun in the corn pit!

Rode with this little guy on the animal train.  Holy cow its a good thing my hips were being somewhat cooperative for me that day.  It felt like we were going 100 mph and flying over jumps!  The kiddos had fun!

Petting Zoo Fun!

Our little Fam

Thank you Grandma and Grandpa!

It's amazing what you can do in a weekend!  And it really seems amazing when you write it all down.  Three days of memory making, that's what it is all about.  The house remained a mess, the laundry piled up....but hey....we won't ever look back and say "remember when Mom and Dad did laundry that one Saturday"  hehe.  (Josh is probably reading this thinking....ummm I did do the laundry).  I know hunny and that is why I love you.  (I just refuse to do laundry here after someone told me snakes can crawl into your dryer vent!!!)  I said I will do laundry when we move, or I will just keep buying new clothes.  

Hope each of you had a wonderful weekend....whatever you did....

love the Remme Fam

Promise and Protection

"Try to stay conscious of me as you go step by step through this day.  

My Presence with you is both a promise and protection."  

My daily devotion is reminding me each and every day that God has this.  I don't know how he does it but every day I read the passage and it COMPLETELY relates to what my life entails.  

I learned this week that a sweet woman from down south (mother of 3) was just given 6-12 months to live due to cervical cancer.  I learned about her via a Matilda Jane website.  My heart sunk, I wouldn't wish this news upon anyone.  I couldn't help but message her.  I told Miss Megan that I didn't have any words for her diagnosis, but I truly knew how she was feeling.  As a Mommy your only dream is for your children and when you are told that you may not be there for them....well your little world feels as though it is crumbling down.  

This whole diagnosis thing...has definitely got me thinking....

God works in so many amazing ways.  I am here today to say thank you for giving me my babies.  Thank you for giving me this life.  I am so incredibly thankful for the amazing people you have put into my world.  

Life is so precious, we are only given one opportunity.  Why does a scary Stage 4 Cancer diagnosis make it so much more real.  Why couldn't I have realized this without a stupid Cancer diagnosis.  

Well...maybe I am meant to show the world, that being kind and living each and every day to the fullest is what it is all about.  

My stomach hurts with all of the hatred and the distrust in this world.  (aka election time on facebook).  Don't worry....I will not go into who I support or who I do not.  (Fun fact my hubby and I support completely opposite people and we still love the heck out of each other :)  

My trust is in God.  I know that he has our back.

An update:  I had another appointment on Thursday.  The tumor in my breast is 1/2 the depth!!  I hadn't felt it for a while (I was mad at it) but was so surprised to feel the difference after just a month of the hormone medication!  I received my second dose of IV Zometa (bone medication) and my shot in the belly of Zoladex.....bring on the menopause and hot flashes.   Plan is to follow-up with a PET scan the beginning of December.  

This blog post may not make a ton of sense....but I am just letting the words fly out.  I want people to know that I am positive and optimistic about the future, but I also don't want to dismiss the real feelings that I have.  (Most of the time it has to do with being a Mommy).     

Each and every day, I am reminded of how amazing everyone is.  Whether it is the "check in" text messages, the events to raise money, the caring site, the comments, cards, and gifts.  We as a family are overwhelmed with happiness and gratitude.  Holy cow you people rock.

Ok.  Time for bed.  I am sure my 14 month old will not sleep in for Mommy just because I stayed up late.  The nice thing about having stage four breast cancer and having three small children....is life really doesn't change a ton....at least for now.  And that is what I love about this.  I am just Mommy to them, that's how I would like to keep it :)  

Genetics

POSITIVE: Pathogenic Mutation Detected

Well out of this whole whirlwind....I can honestly tell you that my genetics appointments have been the most interesting and if you were to say that I am "excited" about meeting with my genetics counselor....well sure....you could say that.  I wish I didn't HAVE to meet with anyone.  Like oncologists, nurses, genetics blah blah blah.  (Meaning this Cancer thing is all a dream)  BUT....I truly was extremely intrigued during my genetics appointments.  

I will start this out with, holy cow people are amazingly smart.  I am so incredibly thankful for these individuals who have the knowledge and passion for genetics.  I am also extremely lucky and fortunate that one of my very close friends' aunt is who I met with.  She is "honorary auntie" and my smart, intelligent, cutting edge genetics counselor.  A pretty bad ass combo.  

Well most of you out there....(I don't know who is reading this so I am just generalizing) probably know about BRCA 1 and BRCA 2 gene mutations.  Miss Angelina Jolie is who made these mutations "popular" as she tested positive for the BRCA 1 gene mutation.  Her mother died of ovarian cancer and she was told with this gene mutation she had an 87% risk of breast cancer in her life time.  Angelina Jolie decided to have surgery to lower her chances of these cancers developing. 

Because my genetics counselor is amazing, she ordered multiple genetic tests as opposed to just going with the standard BRCA 1 and BRCA 2 tests.  And guess what.....I tested positive.  

My pathogenic mutation is in the PALB2 gene.

The breast cancer risk estimate for individuals with this genetic mutation is 33-58% in a lifetime depending on the presence of breast cancer family history.  And also an increased risk for ovarian and pancreatic cancer.  I am on the "lower" end of that risk ...  33% as we don't know of any breast cancer in my family.  But holy cow...33%...who would have thunk.....

Bam....that is where all of our puzzle pieces started to come together.  NO breast cancer that we know of in my family.  BUT pancreatic and ovarian are present.  (Great Uncle, Great Grandpa and Great Grandma).  

WE DO NOT know what side of the family I inherited this from, so we are taking the next step and testing my Mom.  That way we can start testing family members for this gene mutation.

I see this as a tool, a tool for family members to know about so they can be screened and watched closely.  Genetics is an incredibly amazing thing, but extremely scary all at the same time.  

As for my sweet babies....we will just wait until they are old enough to be tested (I believe this happens at age 18).  They have a 50% chance of inheriting the mutation. Screening would just happen early and more frequent for each who test positive.  Fingers crossed this mutation stopped with me :)  

From my understanding PALB2 is a "new" gene in the breast cancer world.  Hopefully this will only help in the addition of "tools" in my toolbox for keeping this C crap in remission.  

I will say, I have learned A LOT in the past month.  Things I wouldn't have ever wished to learn about myself, but I am truly thankful that I am surrounded by knowledge and expertise.  As a type A, independent, self sufficient, perfectionist I will say it has been extremely difficult to feel lost in the information.  But I am taking it all in, and trusting in my amazing team to lead the way!  

These are my reasons....

These are my reasons to fight.

These are my reasons to smile.

These are my reasons to love.

These are my reasons to continue loving life.....

I cannot even begin to tell you what these images mean to me.  Pictures have always been a huge part of my life.  They bring me so much joy.  I am so thankful for Amy with Chubby Cheeks Photography who so graciously gave my little family this opportunity.  And a huge thank you to Miss Cassie Stone for coordinating everything! Being a Mommy is the BEST (exhausting) but BEST job in the world.  I am thankful for these three little ones and I am so thankful for the most amazing husband a girl could ask for.  We will do this together (with God's strength) and we will succeed in living every day of our lives to the fullest.

Amy....you were right....these pictures were EXACTLY what I needed as a part of my healing.  Seeing these images brought such light into my day.