Breast Cancer - My Family's Journey

The Lapper...

This week I had the honor of speaking at the Cancer Services of Northeast Indiana Lapper  VIP party.

This event is a wonderful event in that it gives the community the opportunity to "walk a mile (or more)" in the shoes of a cancer survivor.

The goal of the event is two-fold... 

to raise funds for Cancer Services and to give the community an opportunity to stretch past their comfort level and walk as long and as far as they can - to experience a little bit of the struggle that cancer survivors have to endure every day. 

 

I hope that you will visit the Cancer Services of Northeast Indiana website to see what this amazing organization is all about.

They have been a huge part of my cancer journey.

I will apologize for the tears in the video, I blame Amber for her very touching introduction - I was crying before I even got to the podium.

 

 

 

 

For beautiful eyes, look for the good in others; for beautiful lips, speak only kindness; and for poise,

walk with the knowledge that you are never alone

~Audrey Hepburn

I Believe...

This is just what I needed today.

 

 

 

 

 

 

 

 

 

It's a New Year...

WOW!

it is crazy how fast time flies by - I can't believe that I haven't posted since December.

 

Well, a lot has happened since my last post...

Andrew turned 3 in January. 

I had my 2nd scan for the trial that I am participating and the results were not as good as the one in December.

My oncologist moved me into a different arm of the study so now I am getting daily oral chemotherapy and a new infusion drug.

I had my 1st infusion three weeks ago.

It wasn't easy but it also wasn't the worst medication that I have had.

This one can cause fevers and high blood pressure and after my 1st treatment I did end up in the emergency room with a fever and chills on Super Bowl Sunday.

I felt terrible for Dan - he had to watch the 2nd half of the game at the hospital - good thing there was the power outage at the beginning of the 2nd half otherwise he would have missed it.

...

On a lighter note -

Dad's night is tomorrow at school.

Michael's class is putting on a play and he has been practicing so hard to learn his lines.

I got to watch the dress rehearsal today and I have to say - I think he might have a bit of an acting bug. He is only 5 and only time will tell.

He told me he loves it, so we will see...

Dan and I are planning our 10 year anniversary trip for this summer.

We decided on Italy.

I broke down and finally emailed a travel agency - planning a trip is tough work!

...

I will have my 2nd infusion of the new drug tomorrow.

Hopefully a hospital visit will not put a damper on the weekend!

 

p.s.

I need to acknowledge some amazing Matilda Jane Trunk Keepers that continue to go above and beyond with their generosity.

Team Paperdolls - Thank you so much for the most beautiful quilt - the stories behind the squares are so touching. I am so deeply touched that y'all shared such meaningful pieces of your lives with me.

Team Stylists - I am in love with the photos from your walk that you created at your team meeting. and the mini benefit that you held in my honor brought me to tears.

 

                 
sorry for the small photos...they didn't want to cooporate.

 

 

Christmas Blessings...

The past week has had me thinking  alot about how
much my life has changed since August...

 

When we first got the news that my cancer has returned, it was our 9th anniversary - seriously, our appointment was on our anniversary.

on that day, we were sure that our life together was coming to an end. We talked about our wills and  how our kids would remember me. I started a jounal for my husband - he doesn't know about that yet.

Our focus was completely wrapped around making my final months as normal as possible  - is was so easy to go to that  horrible place in our minds because the news just kept getting worse and worse.

...

I began treatment in September and I got so sick that I could hardly recognize myself.

Then, as if right on cue, something changed. I think God spoke to me in October.

He spoke to me through the amazing community of people that make up the Matilda Jane family.

He spoke to me through my husband - I don't know how he became the optimist in our family -that role has ALWAYS been mine - but he did and I am so grateful for that.

He spoke to me through my super supportive friends, you have been my rock and I know that I don't tell you enough.

...

So now we are to November...

I began the clinical trial with a hopeful heart.

Thanksgiving came and I was presented with the most amazing gift from the Matilda Jane Trunk Keepers -   it was way beyond what I ever expected.

Then the side effects of the new chemo began. I was nowhere near as bad as September, but let me tell you - not having full use of my hands and feet is AWFUL. This side effect comes and goes because my chemo is oral and I can (sort of) control the dosing to lessen the effects. 

...

On December 1st, my entire family filled my home with so much love and laughter that I could hardly stand it. It was my best family Christmas that I can remember - Michael ended up with the stomach flu (poor guy) but it didn't dampen his spirits at all. and we even got all thirteen grandkids together for a photo shoot to surprise my mom.

 

at the same time - benefit photo shoots were happening across town - Betsy King Photagraphy and Legacy Protraits by Kayte  - you ladies have a special place in my heart.

...

I celebrated my 37th birthday with some of the most talented business women I know and I am so blessed to be able to call them friends - although sisters may be more appropriate .

Now we are here -

I had my first bit of good news from my doctor since August - My December scan came back STABLE.

I was so prepared to hear bad news that when I heard stable, I was dumbfounded. This was my early Christmas gift from God.

I now could focus on making this Christmas amazing for my boys without having to distract myself and my husband just to get through it.

and this Christmas truly was the BEST CHRISTMAS EVER!

We were so wrapped up in just being a family that I completely forgot to capture the moments on camera. 

but it's okay  -  because those moments of pure joy and excitement are etched in my heart and in my mind - I can see them now as I type as if they are happening right in front of me.

The past few days have been absolute perfection. Today it finally snowed and we never even changed out of our pj's. we just basked in the glow of Christmas joy and each other.

 

A few months ago we were sure that I wouldn't be here this Christmas.

Today are are talking about how we will celebrate our 10th anniversary in August.

We are planning to replace the memory of our last anniversary with a MUCH better one.

...

Merry Christmas to you all, I hope it was your best one yet.

It most definitely was our best Christmas ever!

 

p.s.  That 1st photo was taken in Kitale, Kenya, by my sister in law, Denise. Those are the hands of some amazing young girls that have absolutely nothing. Those girls were praying for me to get better - in the midst of their unfathomable harsh lives, they took time to pray for me.

I have no words to express how humbled I am by them.  visit chicks for children to learn more about how you can help them. These beautiful children need so much.

37...

it's not a glamorous number.

It's not a number that gets too much attention.

but it a very important number - you can be sure of that.

today is my 37th birthday.

Happy Birthday to me!

you see -

when my girlfriends are perpetually turning 29, I am happy to shout my age from the rooftops.

So here's to another year of joy with my boys, my friends, my family.

I can't wait to celebrate #38!

Being Thankful...

If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.
~Rabbi Harold Kushner

 

These past couple of weeks have been such a whirlwind  that I forgot to post- So I will just get right to my top ten of things I am thankful for this year.

10. Clinical trials - I have one cycle completed. let the side effects begin!

9. Oral chemotherapy. my hair is already starting to grow back.

8. Friends - the group of people that I can call friends has grown exponetially in the past few months.

7. Meals made by friends - they are lovingly prepared for my family nearly every week - on most      days I feel okay so I feel guilty that I am not cooking for my family.

6.  4 day weekends.

5. Matilda Jane Trunk Keepers -  you have no idea the impact you have had on my life this year.

4. Family Christmas at my house - my entire family is coming this weekend from Michigan. I am SO   EXCITED

3. My super supportive family at Matilda Jane - Wig Wednesday is my favorite day of the week.

2. The DeMarchis Family.

1. My two amazing boys - they are so full of joy (and energy). they make my heart sing. 

1. Dan - life is as close to normal as it could possibly be because of you - you are what keeps me      fighting. for you I am most thankful.

 

I hope that you all had a wonderful Thanksgiving filled with joy and family and the gifts that only they can bring. I certainly did.

A few questions...

 

Why me? what have I done to deserve all this?

these questions are almost always followed by a list of all the things that have gone wrong with ones life.

I find myself constantly asking these questions.

asking them in response to all the amazing things that I have been blessed with - especially since living with cancer has become my new normal.

take all these fundraisers that have taken place in the recent past and the card campaigns and the meals  and the flowers - this list could go on for miles -

I still am perplexed by the magnitude of it all.

I am sitting here typing and looking out the corner of my eye and I see the aftermath of two young boys in the family room. train tracks take up a large corner of the room and I can see the Legos that have taken over the dining room (Dan is partially to blame for that) 

I am so happy that these images fill my mind and not the negetivity that cancer brings - although I could do without the mess.

I am saying this because my new normal has so much of the old normal still in it, and that is what makes my heart sing.

p.s.    that quote at the top was Dan's fortune last week at P.F. Changs.

...

This week has some more change coming my way.

I have decided to take part in a clinical trial at Simon Cancer Center at IU.

I am both scared and excited at the same time.

scared of the unknown, but excited at the possibility of trying a new drug that I otherwise wouldn't have access to.

a new drug that just might be the one to put me into remission.

I start this week. 

fingers crossed. 

overwhelmed...

My Goodness - a lot has happened since my last post.

I would love to report that it has all been sunshine and roses but that just isn't the case.

Now don't let that take you to a bad place...a ton of great things, no AMAZING things have transpired over the last few weeks but there have been a few setbacks too.

So I will just start where I left off in my last post...

I had a treatment on Thursday, October 4th. No Chemo this time since I had such a terrible time recovering from the first treatment. So I was given the non-chemotherapy drugs from my arsenol instead.

The next day, I felt just okay enough to go in to work and on my desk to greet me was this...

then a few hours later this arrived...

Not only did a group of super sweet customers send me that gorgeous wreath, but they started a card writing campaign. That beautiful trunk has at least 70 cards in it from across the country. I open a few a day in addition to the cards that come to my home everyday from friends.

Later that night my husband and I attended the Bust a Move fundraiser for Cancer Services of Northeast Indiana. the whole thing was just awe inspiring.

the very first thing that happened was about 1/2 the Matilda Jane Home Office staff as well as some friends surprised me by coming to the event to show their support. 

even more surprising was that I found out that night that Matilda Jane - in addition to my mom - sponsored my bust that was being auctioned off.

oh, it gets better...Matilda Jane sponsored the whole event! that's right - I had no clue. I knew the team loved me (we are such a close family at MJC) but this put me over the moon.

and it gets even better than that...

The event more than doubled what they were hoping to raise that night. They wanted to get to $15,000 - the grand total of the evening was $38,000  - My bust sold for $8500 - setting a new record!

now just so we're clear - I only modeled for the bust. An amazing local artist, Jon Recker, had such vision, the finished product knocked my socks off, and apparently the socks of the guy that bought it that night.

Here is a pic of some of the MJC team and the artist & me at the end of the evening...

moving on to Wednesday, October 10th -

I met with my oncologist for a follow- up appointment. Since I didn't get chemo she wanted to make sure I was reacting better to the drugs.

Well, I had some pain in my lower abdomen as well as some severe stomach pain so she sent me for a CT scan on Thursday thinking the medications may have caused an ulcer.

My oncologist called me later that night while Dan and I were at the annual Cancer Services Tribute Dinner.

The medications didn't cause an ulcer...

They found several small tumors on my liver and the lining of my stomach was inflamed.

We decided to (literally) drown our sorrows from this news by going to the Notre Dame/Stanford game in a torrental down pour on Saturday. ~Thanks Amy and Tim!

Here we are in front of "Touchdown Jesus"...

The weather was aweful and I only lasted till half time. I was completely worn out but so happy to have some alone time with Dan.

my oncologist ordered an endoscopy with the hopes of getting a biopsy of the tumors on my liver.

That procedure was on Monday. As of now I don't have the biopsy results but the hope is that we will shed more light on how my disease is behaving so that we can be sure we're on the correct path of treatment.

...

In the midst of all this happening -

the most amazing group of women that make up the Matilda Jane Sales Force - our Trunk Keepers have been a beacon of hope for me.

They have taken it upon themselves to be this light in my darkness. EVERY day I receive something from at least one trunk keeper in the mail either at home or at work. a card, a gift, flowers, anything to make my day just a little bit brighter than the one before.

and then they went and did this...

I can't talk about it with out crying so you'll just need to go to the Matilda Jane Blog  to read more about it.

and now this brings me to last night...

you see, I have been in Northern Michigan since Thursday with some of my favorite people in the world.

Denise and Lynette have completely worn me out - in a good way - of course. Petoskey is, in my opinion, one of the most beautiful places on Earth and just being here and letting all the boys explore the trails in the woods while we get some work done then go shopping is my idea of a perfect weekend.

Then Dan, David, Denise, Lynette and Tod  had to go and BLOW MY MIND with this...

I could have killed them all for doing this - I still can't wrap my head around it.

They bought my bust and I am taking it home.

I love them all so much for this.

...

So thank you to everyone - the well wishers and card senders and meal makers and prayer warriors.

thank you for keeping me positive

for not letting me drown in self pity

for being that beacon of hope

and the light in the darkness

you all continue to make a difference in my life every day.

and I love you for that.

good times...

I am so happy to report that I made it through the week at work.

Every day I felt a little better and the week ended on a high note.

Saturday morning I participated in the 5th annual Fort 4 Fitness 4 mile run with my husband -

we signed up in May and I was determined to finish it even though since I broke my back in June I haven't even attempted to excersise - let alone run 4 miles.

my biggest fear was that I wouldn't be able to complete the race so I decided to walk instead of run.

you see, I lost 7 lbs the previous week from being so sick and the neuropathy has started to affect my hands and feet so you can imagine my concerns about my energy levels and such.

But I finished and I walked at a 15.5 minute mile pace and I even ran the last 1/8 mile or so.

So I am happy with the results. I fully expect to be able to run the next 5k race (and finish).

 

Dan and me at the finish line.

 

...

and if that wasn't enough of an event for the day, I went to Viva La Pink with some very lovely ladies. 

Viva La Pink is an annual fundraiser for the Vera Bradley foundation for Breast Cancer. This year the foundation presented a check for over 2 million dollars to researchers and doctors from the  Simon Cancer Center in Indianapolis.

It is always such a fun event and I was so happy to spend the evening with some great friends.

 

Pretty in Pink for a wonderful cause

 

 

My MJC girls and me

 

As you can see we had a great time.

So that brings me to today...

I spent the day napping and doing absolutely nothing - I over did it a bit yesterday.

I plan to over do it again this week.

I have chemotherapy on Thursday and then another event on Friday...

Bust a Move - It is an annual event put on by the Fort Wayne Derby Girls to benefit Cancer Services of Northeast Indiana.

I have never attended in the past but this year I was asked to participate.

The Derby Girls create busts of Survivors and local artists turn them into amazing works of art that are auctioned off to raise funds.

I am so excited to see my bust in real life! I hope that I can afford to buy it.

Even if I don't win it, I am still so excited just to be a part of the event. Here is my interview for the event - it was done in June - a couple of months before I was diagnosed.

 

Talk to you soon...

 

Tough...

If you read this blog from the beginning -

you know that my first time around the block was more difficult emotionally than physically.

I had chemotherapy on Wednesday and was back at work by Saturday.

I refused to let cancer interfere with my daily life.

...

this time though, I was knocked down pretty hard.

I had a tough time getting back up.

It has been a bit more than a week and I am still having a tough time.

but - today I finally drove to the grocery store.

all I bought was kraft mac n' cheese and fudge pops before I got worn out and had to call it quits.

these drug side effects are reminding me of when I was pregnant...

...nausea and random cravings - I really don't even like kraft mac n' cheese.

although I will say that pregnancy nausea was way better.

...

So, after a week of letting my girls at MJC take almost everything off my plate,

I think I am ready to go back to work  - and life - on Monday.

Oh Lord, please let me be ready on Monday - I am SICK of being home sick.

 

speed bumps....

So the gal that was ordering my drugs for today forgot to order the Pertuzamab. 

It's a pretty new drug so they don't stock it - it only takes 24 hours to get it - but it wasn't here today.

So after being at the doctor's office for three hours and getting poked twice - with no numbing cream - I was sent home and asked to come back tomorrow for the 7 hour infusion.

Oh well...

tomorrow is another day.

on the upside though, I got to pick Michael up at carpool.

I was the 1st one in line and the look on his face when they called his number was PRICELESS.

Oh how I love that boy...

skipping chemo was SO worth it!

finding clarity...

I have been doing a lot of soul searching these past few weeks. 

I am still angry but I think I am starting to find some peace.

a couple of girlfriends came over last night to catch up -

we cried a lot.

we laughed a lot too.

we talked about my diagnosis, how I found out it was back, what the doctors said, etc...

but one question really stood out - my dear friend asked me "how do you keep it from consuming you, how do you function?" 

my response was "I just have to, if not for me then for my boys. My job in this life is to be their mother first. letting it consume me is not an option."

you see, she lost her mother to cancer not so long ago and I can only imagine how hard it is on her to have a friend  get this diagnosis when her own loss is still so fresh. 

I love her dearly and my heart aches for her.

talking this week has really given me some clarity  -

I have decided that maybe this isn't all about me after all.

maybe it is about my children.

I know it sounds crazy...

but maybe, just maybe, one of my boys will discover the cure for cancer and my getting sick is the catalyst that sets it in motion.

only God knows the answer.

But wouldn't it be amazing if I am right?

...

Tomorrow I begin chemo.

It is going to be a very long day - my mom is here to help me get through it.

I am so glad she is here. 

I hope I don't vomit. that really sucks.

reality...

Dan and I have been talking to Michael about what is happening.

We had the cancer talk last week.

Today, I was pleasantly surprised to learn that Michael really was listening -

We were at the dentist today and Michael was watching while I was in the chair.

The hygenist asked if I had any health changes since my last visit - so I told her that the cancer is back.

Michael chimed in and said something like this -

"yea, the cancer bugs are back in mommy's body.  the medicine is gonna fight the bugs, right mommy?"

then he made a noise like he was play fighting.

I couldn't have been more proud of his explaination - he really got it. 

...

This week I am getting ready to begin the next round of treatment.

I have three more radiation treatments left - my back is finally beginning to feel a little better.

My hair will be very short and sassy on Thursday  - I will try and post pics -

my port gets put in on Friday.

Next week  is when it all begins.

I just hope that I can get my head in the right place before then.

 

 

moving forward...

Why is it so hard to get the words to come out right this time?

the last time we went through this I had no trouble finding something good to say  -  and you all know me, I am a firm believer in not saying anything if I can't say something nice.

I want to tell you about how Michael and Andrew are doing in school,  that I am FINALLY getting a Kuerig (so excited), about the awesome projects that Dan finished this summer.

But I can't...

I am too angry to be positive.

I am angry that I was naive to think that we were past this.

I am angry that I can't get the reality of my mortality out of my head.

I am infuriated that I can't pick up my baby - the lesion on my l4 vertabrae caused a compression fracture.

I hate the fact that I am going to lose my hair  - again.

...

but I want you to know that in spite of all my anger - 

I am so deeply touched and honored to have all of you lifting my family up in prayer.

I want you to know that although I can't possibly respond to everyone - I have read every single message you all have sent and I have fought back the tears (not very successfully) from reading your kind and encouraging words.  

I truly had no idea that I have touched so many people.

You all have inspired me too.

so I will keep moving forward

because above all other things, I am and I need to continue to be ...

- a mother - a wife - a sister - a daughter - a friend 

Thank you for reminding me of that.

A new chapter...

I honestly never thought I would be here again.

I guess that the idea of it coming back has always been in the back of my mind,

but our lives were back on track.

I have a great new career, I am healthy, my kids are getting bigger by the minute, Dan is amazing...

Why then, does life have to throw a curve ball at us - why this curve ball?

the cancer is back.

it has invaded my bones and there is no cure this time.

This time there is possible remission. there is making me comfortable. there is no end to my treatment unless I say it's time.

The light at the end of this tunnel is the possibility that I could be one of the small percent of women that respond to treatment for ten years.

That would make my children 15 and 12 when I leave them...If I respond well to treatment.

When we got the news two weeks ago, I turned to Dan and said

"I don't know if I can do this again" his response was simply "you have to, we have to". 

So - we will.

we will do this again.

God, I really hope you think we can handle this.

because were aren't so sure this time.