Before Mascara. Love and Life

I woke up tonight as I do so many nights. Tonight I wasn't soaked in sweat and not yet in tears.

I turned over in bed and reached out for the strong arms that I grab for so often, but not for strength as I usually do. Instead, I grabbed for the softness of his skin. I felt the inside of his arms. The part where his skin is still baby soft, not aged from working outside or rough with callouses from sanding the walls of the downstairs bedroom because the stairs are sometimes hard for me to tackle. He knows eventually our bedroom will need to be on the first floor.

Inside my head, I fight the words I jokingly shared with a couple of my friends this weekend. What about Ron? Find him someone, I pleaded with them. But, well she will have to be funny and awesome and fun and demanding and family oriented....

And I can't stop the tears from falling.   No matter how hard this fight is for me, I know it's harder on the caretakers. I've been a caretaker and watching the fight is brutal pain that can't be decribed in words.

I know the ones left to cope aren't quite sure how to wake up each day.  I know he struggles to sleep and often I catch him watching me as I drift off to dream. I'm not sure if he knows I dream for him to be alright.

Or just how much I love him.

***Do not tell him about this post. He hates when I write about him!

Speaking Out for G.A.T.E.

Dear Board of Education,

First of all, I would like to thank you for letting my friends and I speak out on behalf of the G.A.T.E program.  Due to prior obligations, some of our classmates could not attend tonight's meeting, but helped write and support our message. I am Lilly Strong and these are my friends Emma Foos and Sophia Bittel. G.A.T.E stands for Gifted And Talented Education. G.A.T.E is a great place to be and we like being in it. 

      G.A.T.E. is different from our other classes because it has the goal of building the capacity for highly complex thinking in an interactive environment.  It also meets the unique needs of not one, but all of the students in the program.

      G.A.T.E. is the best part of our day.  If you take it away, we will have nothing to look forward to. 

      Now you’re probably wondering why gifted students need a special program?  We can answer that! Recent studies show that if a child is gifted, he or she may need a program, like G.A.T.E., that is responsive to their level of learning and thinking.

      G.A.T.E. improves its students in many ways.  Brain Teasers teach us facts about the world. A brain teaser is question that challenges us students by questioning our knowledge of the world, science, history, and more.  The G.A.T.E. teacher also expects us to keep a daily journal.  Journal entries teach us writing skills and challenges us to think about the topic of the day.  We also learn different ways to solve mathematical problems.

            G.A.T.E. gives students a chance to go above and beyond.  It helps children learn critical thinking skills they will use for the rest of their life.

           

       The G.A.T.E. teacher receives a special training that she must have in order to teach G.A.T.E.  She has to update this.  I verified this with Mrs. Makulinski,the current G.A.T.E. teacher.

   We hope you think about all of the reasons we value the gifted and talented education program.  Please do not take it away.

   We would like to close with a poem by Olivia Vogelpohl...Sorry Liv, I gave the poem to the board and didn't make a copy.  Macey, Lilly added some from your speech and we also gave the board a copy of your hard work.

Thank you.
Lilly Strong, Emma Foos, Sophia Bittel, Alayna Hahn, Macey Bauder, Jordan Beam, Marissa Tracy, Olivia Vogelpohl

Prayer is the Pipeline to God

For my nonfacebooking friends, to elaborate to include more fluff, and to document forever...

Sunday morning I woke up and my first thoughts were for Sharon and the rest of Ron Dunn's family. Ron passed peacefully in his sleep a couple nights before that after a battle with cancer. I texted Grant and let him know that I had prayed. I told Grant that I would sing at the celebration of life. I heard His voice telling me to offer my voice. The family accepted my offer.

Before the service Sharon shared with me that Ron had listened to my advice and tossed his pills when he was done taking them;)  I always encourage bad behavior, but during a brief visit, I told him that it's ok to get mad and act like a baby sometimes...oops:)

At his funeral, as I stood in front of a grieving family, I was glad that I was listening for His whisper. It was as if He was with me as I sang to Ron's family and friends. Pulling my attention to those in need.  Whispering instructions each step of the way.  Don't overstep boundaries, be respectful of the grieving, sit quietly and still until it is time to sing.

When it was my turn to sing, I could feel His presence.  I could hear His voice in my  head.

This afternoon I was reading a book and it talked about making eye contact. "When someone lifts up your head, it's an invitation for eye contact. It's a way of clearly showing, "I see you, I'm here with you. I want to connect with you."'

It's profound to me that I picked up this book today. It has been sitting on my nightstand since I went to NC. As I practiced my solo, I kept telling myself to look at the family during specific times in the song; knowing in my heart that I was singing for a reason.

To let them feel His hand. To remind them to believe. To honor a wonderful man. To be a witness.

________________________________

Fast forward a week (4/19).  I'm set to have chemo on Tuesday.  I woke up yesterday feeling well and ready to play taxivan for the final basketball game of the season and soccer fun, but when I undressed, I noticed my port site didn't look right.  Part of my scab from where they cut me open to put in the port came off and my port is currently exposed.  This in NOT GOOD.  The port is a direct line to my blood stream AND heart.  If infection occurs, it is bad.  Really bad.  So, I've talked to a couple of my favorite clinic nurses (brother and Laine). Laine talked to the NP on call in her department.  I emailed my oncologist and talked to the on call oncologist.  Everyone is in agreement that I need to come in asap and have the port removed.

I'm leaning toward simply having the port removed.  This way I don't have to be put under anesthesia again and I don't have to worry about this happening again for a while.  Since my foob implants are nice and perky, they have to place the port higher than they would on a patient without foobs.  My arms and my collar area are the only skinny areas left on my swollen (not fat, swollen;)) body.  Because I'm thin in this area, they can't get enough skin to sew it up properly and I move around too much for it to heal.  I can have the treatments via IV in my arm until my veins will no longer cooperate. As long as I can get my oncologist on board, that will be the plan moving forward.  He is calling first thing tomorrow morning to discuss.  

I had a pity party for myself yesterday.  I cried for the first time in a long while. * If you see me "crying" in public, I'm probably not crying.  My eyes are like faucets and decide to run ALL THE TIME.  It's annoying, but I'm getting used to it.*  I ate combos and had a few beers that a friend dropped off to cheer me up.  We sat around a fire with friends that understand setbacks all too well.

My fingernails are starting to change color and have deep ridges in them.  I may lose them all together at some point in this treatment. 

Today, I'm done with my pity party.  I just want the port out so I'm not at such a high risk for infection.  

I'm choosing to BELIEVE.  In good. In light out of darkness. In strength only found when I lean on Him. 

 Lots of love,

Video Blog: Sarah,Glennon, Chitown, Hard Stuff, Face Chub, Med Update

So, I'm not sure if I'll be able to get this video blog to load or what, but I did take the time to record one.  That should count for something, right!?!  It's over 20 minutes long.  If you get bored, please don't feel like you have to keep watching.  I don't care if you watch it from beginning to end or at all.  Honestly, when I have time to write, I would rather just veg, read or watch House of Cards.  So, this is the best I can do right now.

I was also too lazy to put on makeup or simply throw on a chemo beanie.  Some of my hair is still hanging in there and it itches when I have the beanie on all the time.  Deal.

Also, I say "and" a lot.   I didn't really prepare what I was going to say, just scribbled a couple notes and gave it a whirl.  Again, deal.

Enjoy.  Or don't. Whatever:)

Questions to kill time:

Christi: Did we find all the eggs???

Eeerrr, uhhhh. Sadly, I must admit after I helped unload the car (By unload, I mean that I stood in the road and talked to a friend), I came in and plopped directly on the sofa.  I didn't move until the pizza arrived and I didn't count the eggs.  I will assume that all 40 were accounted for because Lilly is a perfectionist and I don't think she would have allowed the egg hunt to stop until all eggs were found:)

Jess: What is the hardest part about all of this?

Hands down, easy answer, when I think about my kids having to do any type of milestone thing without me.  It can be something simple like, filling out the 6th grade camp form or hard things like graduations, weddings, having their own monsters.  Whenever I think about them having to do them without me, it breaks my heart into a million, trillion pieces.  I think that is why I want to do the "forever gifts".  If I'm here in my earthly body to give them ALL to them, great.  If not, at least they will know that I thought about each occasion, that I took the time to write how much I love them and that I'm proud of them no matter what.

Jess: How can we help you?

Continue to pray for good days.  On the good days, be happy for me and my crazy family.  

On bad days, pray for my patience and grace as we navigate uncharted territory. 

Try not to be offended if I don't return calls, emails, texts.  Some days I don't feel well. Some days I want to scream and cry.  I can't even predict the moods, so you might as well give up, too.  Just love me through the good and bad days and pray.  Pray, pray, pray.  For strength, dignity, and grace each step of the way.

Jess the blog hog: What helps? What hurts?

Helps: I am here when you need me. 

Hurts: It's pretty hard to hurt my feelers at this point.  I will try to understand where you are coming from every step of the way.  If I say "no thank you", please accept that answer and not question why.


Q: Are unicorns real?

Is santa real?  The Easter Bunny?  They are because little people believe in them.  Mythical creatures known for purity and grace??  Bet your ass I'm on board with that!!  I believe in unicorns, but you're well aware of this:P  I also believe in fairies and leprechauns for the record.

Smart, funny, awesome (smart ass friend): Does your poop smell like roses?

Ben D. has claimed my shit to smell like roses from the first time I stuck up my nose to him.  It was a long time ago AND for what it's worth, I really wasn't that snobby.  Sadly, however, my shit smells like shit.  And yes, sorry men, women do poop. 

Kristin and Clark: Why is the sky blue and the grass green?  Did Noah put fish in the Ark with him?

Blue because if the sky were always PINK, I'd hate the sky and green because 
green is fun.  Green beer is fun.  Green eyes are amazing.  Green because of chlorophyll or something? 

The children's book I have on Noah's ark does not mention fish on the boat, but that's all the research I've done on that.  

I meant did you have any medical questions for me or anything that I know something about...which isn't much obviously!! SEE ABOVE^^^^^

Bunch of pain in the ass friends:)

It's loaded,enjoy:

https://www.youtube.com/watch?v=-MPuJh9snWU&feature=youtu.be

As always, lots of love!

XOXO,



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Lenten Discipline Like Never Before

Over the last four years or so, I have really dug into my faith.  I have even purposely walked into the wilderness during the season of lent.  I have given up things I enjoy and committed to additional time in prayer and reflection.  I have studied parts of the Bible that talk about the deep, dark wilderness.

This lent, I'm living my own wilderness except I didn't purposely walk into it this time.   The day before lent started I had my first round of taxotere chemotherapy.  Technically, my body wasn't ready to receive the treatment based on my blood work, but without the toxic chemo, my blood has little chance to recover on its own.  My cancer is taking up the space in my bone marrow where good red and white blood cells need to live and crowding them out so they die off before my body receives the things they normally deliver.  My body is currently very low on red blood cells.  Red blood cells deliver oxygen to your body.  This is why I'm not "tired", but instead exhausted.  My body is working in overdrive to do simple tasks.

Wednesday, the first day of lent, I received a blood transfusion of red blood cells to help with my production during this first round of chemotherapy.  The nurses thought I would feel a boost in energy within a couple days.

BUT, I didn't.  Instead I started having an allergic reaction.  The reaction started on my arm, but is now currently making me want to scratch my arm, back and thighs off in order to get a moment of relief. 

When I called the after hours call line, they suggested that I take Benadryl around the clock.  This started a four day Benadryl binge with little results besides effectively making me completely useless and sleep nonstop.  Yesterday I started a steroid which hopefully will finally calm the allergic reaction.  So far, the best treatment for the itching is a paste made of baking soda and water, in case you wondered.

Tonight I'm not drugged on Benadryl, only nondrowsy Claritin, so I thought I'd update...but Camille has decided to make the night a little more interesting.  She just threw up all over her bed.

I WAS going to talk about the wilderness, but as you can see, I'm directly in the middle this Lenten discipline like never before.

Embracing the wilderness and taking Piper outside to smell the fresh air instead of vomit-fest upstairs while that sweet little baby girl in the picture I posted today as #remember showers off the ick.

 

 

 

And honestly, I HOPE and PRAY this wilderness doesn't last the entire 40 days of lent;)

 

 

Oh and they aren't sure what's causing the reaction since I had chemo and blood back to back.  We will discuss the plan of action when I go back to the clinic to have a medport placed next Tuesday.  I have decided to have a port put in this time around for a couple reasons.  I can only be poked in my right arm since I had lymph nodes removed on my left and with the trial I'm on, they test my blood and run tests very often.  The port will save lots of IV sticks and offer them easy access to my craptastic blood.

 

 

All my love and never ending gratitude for everything and always for the prayers.

 

XOXO,

 

Laura

 

Honesty is the Best Policy

Honesty is the best policy.  I've learned this lesson many times in my lifetime, but I'm not sure why my initial reaction was to hide this time.

Maybe to shelter all of my readers?  Maybe to protect myself from additional questions about my prognosis?  Possibly I just needed to process it myself and attempt to get my immediate family and close friends through the news first.

Today I told my bosses that I can't keep up. I can't handle the taxes and probate and I'm not even entirely confident that I can manage the books.  (They took it well and want me to work as little or as much as I want;))

But, I'm exhausted.  Not tired.  I sleep 8-12 hours a night.  I'm exhausted.  It's entirely different that tired.

My blood work explains a lot of why I am so tired.  Out of about 30 things they test for, I'm in the normal range in about 2 categories.  Number wise, I completely qualify for a blood transfusion.  Since I'm not having symptoms other than fatigue, my doctor wants to hold off on the transfusion if at all possible to see what my young body will do with the treatment.  He doesn't want to put foreign blood in my system IN CASE I would react poorly to it.

WHY are my numbers so whacked out? Well, here's some more of the honesty.  I have cancer growing not only in my bone marrow, but the additional testing done on Monday confirmed that I have spots on my liver and lungs as well.

We are not telling the kids that it is growing other places.  We have decided not to tell them because the treatment is the same and the prognosis did not change either.  According to my doctor, either the cancer will quiet with the chemotherapy or it won't.  Either it will shut up and stop screaming at me or I will move on to another treatment to see if that will shut it up. 

I did start the clinical study yesterday.  I take 6 pills in the morning.  I take 6 pills in the evening.  I gag the entire time I'm taking the pills.  That's A LOT of pills.  The side effects are similar to chemo side effects IF I'm getting the clinical drug.  I can't tell if I'm having side effects because I feel like poo anyways.

Mentally and emotionally I am coping well, I think. Although this is not fun/fair/wanted, I do feel so very loved and blessed.  We are trying to live our life as normal as we can during this crazy roller coaster and trying to shelter the monsters from any pain we can. Aaron has been amazing and I have no doubt he will continue to be a rock when I need to lean on him.

I still haven't made it through all of my messages and I'm sorry if I haven't responded.  I try to answer a few at a time when I'm feeling strong enough to read all of you kind thoughts and love, but sometimes I just want to pretend this isn't happening instead.

I am very excited to start the lent Bible study.  At our kick off meeting it was refreshing to see the vulnerability of others as they expressed their prayer requests. I constantly feel so blessed to have such amazing people around me as we pray for each other.

So, there is the update.  I am still scheduled to have my first chemo treatment on the 17th. I am still planning to shut this stupid cancer up and regain some of my energy.  I am still very hopeful for treatment options to be discovered.  I am still hopeful that we can move mountains.

Oh, I'm still VERY hopeful that I can help my babies so they never have to go through this.  My doctor anticipates a study being released soon that will attack the BRCA gene mutation that I have.  He is aware that I want to be a part of any study that can alter this pain in my ass gene and will happily continue to be a lab rat in any experiment that will gain knowledge and power against this gene.  BE READY AND CANCER AWARE.

Be strong and take heart, all you who hope in the LORD. Psalm 31:24

Lots of love,

Specific Prayer Requests

"Um, Laura, you are trending in my newsfeed on facebook."

COMPLETELY AWESOME!!  Just think about how many people are praying for me!! 

Seriously, thank you all for sharing my story, seeking additional prayers on my behalf and talking with the people that I need to be in contact with in order to move this mountain.

We met with the oncologist at the Cleveland Clinic on Friday before my bone marrow biopsy.  He is currently approved for a clinical that HE WROTE-how cool.  The trial involves a pill form of an immune system boost OR a placebo in addition to the recommended second line of treatment: taxotere- Chemotherapy.  Either way, I will be getting the chemotherapy that is most widely used to treat a recurrence of breast cancer. 

I talked with a doctor at MD Anderson Cancer Center to discuss recommendations from them.  He was on board with ALL of the recommendations of my oncologist in Cleveland (and added rest and a positive attitude to the recommended treatment).  The opportunity to conference with this doctor is one of the crazy/beautiful things about life.  When I said yes to a bookkeeping job 10+ years ago, I would have never guessed I would need the connections I've made here as a matter of life or death.  When you have to make treatment decisions for yourself or a loved one, it's emotionally exhausting.  "Am I making the right call?"  "Should we get a second/third/fourth opinion?" "What if my body responds better to the other drug?" Plus, a million, trillion other random thoughts. So, when someone from a world renowned cancer center states his plan would be pretty much identical, it's very reassuring.

The plan:

I will start a clinical trial on Tuesday (2/10) by taking two pills every day. HOPEFULLY, it will be the immune system boost and not the placebo.  I have to go to the clinic to retrieve my pills and answer questions about side effects, energy levels, etc.

I will start taxotere-chemo on 2/17, via IV.

I will have a scan on 2/24.

This will be the cycle every three weeks for 4-6 months or as long as I can tolerate the side effects. They will also squeeze in some Reclast/Zometa once a month to encourage healthy bone growth. Currently, I am planning to work when I'm feeling up to it.  My bosses have been great and want me here as much as I'm able.  I am also planning a few vacations.  The first one is a girls getaway and it works out to be a good week chemo-wise:)

That's the latest scoop on my health.  I think I've been keeping everyone updated on our fourth child from China, Helen.  Her 13th birthday was perfection and all of us are going to miss her when she leaves.

As I prepare my mind and body again for torture, I have a few specific prayer requests:
-That I get the immune system boost and not the placebo.
-That I tolerate the cancer well and more importantly, it blasts the shit out of the cancer and works like round up on weeds (MD Anderson doctors comparison;)).
-That my children see as little of my side effects as possible and as many of my quirky, fun traits instead.
-That my immediate family finds peace with this new hurdle and strength to cope with this diagnosis with grace.

Heidi took pictures, asked a thousand questions, and made mental notes of our appointment on Friday.  I have invited her to share this experience from her point of view and write a guest blog...I THINK she will, but I KNOW it will be late.  She's NEVER on time;)  Here is the update in the meantime.