How Deep Is the Pit -Part II

So I wrote Part I a couple of days ago when I was feeling pretty lousy. I admit, I'm  tired.  I have had some sort of sinus infection/bad cold and ached all over.  I have missed two weeks of work and just don't know who this person walking around in this body is anymore.  At the time I still had eight more of the total twelve treatments and that just sounded undoable.

After today, week five of Taxol treatment with seven more to go, I am humbled.  
Once again, immersed in humility, filled with gratitude.

I don't even know what to say or how to feel.

Yesterday Joel received a call from Klatt Elementry, where only one of the three kids still remain.  Seven years ago we did something kind of crazy.  We sold our home and purposely moved into Dimond Estates Trailer Court.  Why you might ask (Joel did...many times?).   I guess it was more of a calling for me. I desired for our kids live in a neighborhood where they attended school the neighborhood school (previously the kids had been in a lottery program in a neighborhood we did not live in), to live in a neighborhood our church "reached out" to, and one that was close to Parachutes.  Cohesiveness!  There have been moments when I have felt, YES, this is why we moved here.  Kids hung out at our house and we've connected with kids through Parachutes who are sometimes surprised to hear we live in the trailer court.  Living here has taught me so much.  It's amazing how just when you think you are doing the "God thing" right, things really get flopped around.  Since I started working  again full time I've really lost a lot of connection to this community cohesiveness of school, church, ministry...life.

So why am I  so humbled?  The phone all was from the school nurse.  She requested Joel stop by...just because.  We knew something was up and figured a gift was being given.  A gift is an understatement.  It was gift, after gift, after gift.  So many gift cards...imagine the end isle of the grocery store where they sell gift cards from anywhwere and everywhere.  This is what we received.  Unreal!  I guess the reason I'm so humbled is not necessarily the gifts per-say but how many people must have given and the words expressed in the card.  When you work "in ministry" you are on a mission,  right?  It's about what YOU are going to do FOR God...and oh yeah...for his people.  For a while I've been thinking a lot that church has become so humanistic.  The reason we serve is so we get a benefit, so we can feel we are a part of HIS PLAN.  Jesus died on the cross to save ME from my sins.  We serve Him because we love him and it makes ME feel good.  He loves ME.  

And He does, and yes it brings comfort and Joy to know God sent a tiny baby into this world and died on the cross because He loves me.  

I just think God is so much more than that.  It so much bigger than ME.  He is all about redeeming His world and making it all right again and while working out His plan extending an awful lot of grace.  It has nothing to do with what "my hands" have done. We who believe in this great God are just lucky enough to get to participate in it.  Jesus told us to "take up his cross and follow him" and we are to take the path that is less traveled.  A cross is heavy, a path less traveled is scary but grace is extended along the way.  Our family was able to experience this grace today receiving an amazing gift from amazing people who gave so graciously.  A gift that can help me out of the pit or help me find my way back out of the tunnel. Or maybe this is all so I can boast about a Great God and extend a word of encouragement to one of the 11,000 people who have at some point in time read this blog.  If you are also in a pit or dark tunnel, God's grace is sufficient and if you so chose to follow Him by taking upon the cross and following the path less traveled that is what it is about.  You get to participate in God redeeming his world and that is all you need.

I may be in a pit right now and it's kind of dark and dirty but there is hope, there is love, there is humility, there is pain, there is joy and it is amazing.

This is not the only thing.  Dear friends of ours, Mike and Linda Setterberg flew from Fairbanks to serve us.  This too is so humbling.  To sacrifice their time with their family to serve us at this time of year...who does that????  How can you even thank someone enough?  

This little note just cannot say enough how grateful I am.

The Lord Bless YOU and keep YOU, may His Face shine upon all of you and give you HIS peace!

How Deep Is the Pit? Part I

Well...

I have managed to stay at the edge of the pit for a while.  A couple of times I think I lost my footing but now I think I finally fell in.  At first I thought I have hit the bottom.  In the shower today I wondered, "O man, what if this is not the bottom yet?  How deep is it?"  I have also thought of the analogy of a tunnel.  I started this journey in July and until now I have kept the opening of the tunnel in sight.

I lost it.

I cannot see the opening anymore.

Do not worry.  I do not feel hopeless.  I know I just need to climb my way back out or meander a little more through the tunnel to find where I entered.

The light is still there,
I just don't see it right now.

But again, this is my quandry.  How deep is the pit? How much further does this tunnel go?  I am the type of person who is always curious and I always want to make it to the end.  It's like hiking Exit Glacier.  I don't think I have ever made it to the Harding Ice Field and this really bothers me.  I have made it to the shelter at the top but is this on the Harding Ice Field, where does the trail to Exit Glacier stop and the Harding Ice Field begin?

It scares me a little to think about how deep it might be, how far the tunnel goes and this is the one time I don't think I want to know.  Where I am now is good.  Everyday I would like to get a little further out of the pit or at least recognize my path in the tunnel to know I am on the right track.

A Christmas bonus

While at round two of  Taxol today I spoke with Dr. Smiley, my oncologist, basically venting that the insurance is not covering certain things.  Certain things like $3,000 for my Power-Port (for those of you who may not know what a port is...it is a plastic, self healing rubber type mechanism they place IN YOUR BODY which provides easy access to a major artery for intravenously administering the medications and easy access for drawing blood, etc.  This mechanism will be in my body for a little more than one year, then they will remove it.   I think we should have a port removal celebration!  Dr. Smiley was saying today that if the bla,bla,bla radiologist (can't remember the technical name of the person) would have placed the port the insurance would most likely have covered the whole thing.  Because I went through a surgeon who charges more than normal insurance will not cover it.  WHAT THE....???

Why are we not told....so and so can place a port for $1200, I charge $3000...who would you like to place your port?  Umm, let's see here, I think I will go with the $1200 rate that insurance will cover 100%, thank you very much.

So, as I was explaining to Joel the situation and both getting frustrated about it, I was also thinking there is just nothing we can do about that now so accept it, deal with it, and pay it.

Another thought going through my head was, "God, if there could just be a really big check in the mail when we get home that would be really marvelous.  I trust you God to provide in whatever way you want to but a really big check would make life a little easier."  Sort of  feeling bad I was asking God because as usual I just ask Him for these really outrageous things only when I desparately need them...ya hear me?

Well, I know you are all thinking we drove home, checked the mail and there was a big, whomping big ole' check to cover all our medical bills.  Not quite....but just as good.  In the mail was another bill from Alaska Breast Care and Surgery.  The bill was for $77.55.  Alaska Breast Care gave an "Adjustment-Discount-Multiple Procedure Discount" in the amount of $2,500.  We had already made a payment for $500 and now we only owe $77.55.

I think this was an answer to my whining, begging, please God prayer....don't you?

And not to mention when I got home and checked Facebook there was another Christmas present waiting for me.  Geneiveve, an amazing ballet dancer, is performing in a tribute to cancer survivors on the 21st of December and chose me as the person to dance for.  People from church contributed money so that me and the girls can go to the performance on the 21st. Is that beautiful or what?  I guess the 5th Annual Solstice party will have to be on the 22nd.   Or...maybe next year!!  I'll let you all know soon =)

Honestly, I had been feeling a little down the past week or so.

and now...

I am nothing but humbled.

Grace and peace to all of you.  And again, in the words of my Dad, "God is good, keep on praying."

Stacey

FAMILY

There is no better way to get through a round of chemo than with a dad who is fighting his own battle, a tenderhearted mother, and two sisters who are your greatest friends.  My family was able to fly up and spend a few nights in a hotel, spend two nights at Victory Bible Camp last weekend, and enjoy lunch at Chair 5 in Girdwood.  It was a restful weekend nestled in God's majestic creation and my family doing all the cooking and cleaning while they were here.  I am blessed to have such a great family.

Dad was  trooper just heading out in the cold let alone a short hike up a hill.
He gladly accepted a ride on the kick sled back across the lake.

Teepee Ridge

Inspiration Point

Beluga Point along Turnagain Arm

Half way there

Today marks the halfway point through chemotherapy.  I must say I'm somewhat dreading it (other than I get to watch a movie with Joel while I'm getting the infusion!)  Just when I start to feel a little more like myself they zap you again. As I mentioned before taking medicine is not my thing.  I don't think I have ever once in my life finished a round of antibiotics.  Once I start feeling good I know I'm through the woods and don't feel the need to finish the drugs.  That's a little how I feel about this cancer.  I'm through the woods....good to go.  I just don't think Joel will let me quit this time!  I cannot fathom Taxol once a week for twelve weeks, uggg!  Not to mention once chemo is over 33 rounds of radiation.  And after 33 rounds of radiation Herceptin for A YEAR.  Sometimes I wonder how I will get through it.  OK, I've ranted enough.  I know I will get through it.

And this is how I will get through this round...My mom, dad, and two sisters are coming to AK!  We are all very excited for their visit.  Please pray for my chemo buddy (dad) that he will fair the plane ride well and not get too exhausted through his travels.  They leave MI today, Tues. Oct 30 arriving around midnight. There is not much of an agenda planned so hopefully it will be restful for everyone.  If any pilots here in Anchorage would like to take him out I'm sure he would love it!  (Dr. Moll.....are you reading my blog? ;)

Again, as always....thanks to everyone who has done anything to help me get through this.

Theology, Comedy, and Reality

Theology:

I took a class a couple of years back titled The Scandal Of the Cross that had two parts.  The first part of the class was focused on different theologies of the atonement (what happens at the cross and how they impact the practice of ministry) and the second part was about the Biblical practice of Lament.  During the class I was drawn to the atonement theology part (because I am a nerd) of it and had very little interest in the lament portion of the program (because I am Dutch).  Strange how things change.  In recent months I don't think I have thought about atonement theology once, but I am recalling a great deal about lament.  When you boil it all down lament is truth telling - naming feelings and saying it like it is.

One of the ways you can break down the Psalms is into the categories of orientation, disorientation and reorientation.  Laments often take the form of disorientation.  However, the Psalms are not the only place we see laments in scripture. They are also found in Jeremiah (weeping prophet), Lamentations, Job, other prophets, and even in Paul's writings.

I believe that modern day monk Richard Rohr is right when he states "all religion is pain management" and "if you are not transforming your pain you are transmitting it."

In other words we NEED to lament.

One really interesting thing I remember is that in the Book of Lamentations God never speaks.  God is silent.  We expect God to speak in the Bible – it's His book - but as His people cry out in pain He is wordless.  In our world we all expect, in fact we feel entitled, to express our voice, but God stays silent in lament.  God gives space for our pain, disorientation, grief, etc.  In a space where we get defensive and aggressive, God does not.  God honors our pain in His silence.  If God relinquishes His voice and gives space to ours in the middle of His story – then Lament must be important.

So we must name names. We must call a thing what it is.  Lament uses the often abrasive language of frustration and crying out as well as silence, grunts, and the weird utterances of being that show up in the space of not knowing what to say.  No matter how we express our lament we all know, like the psalmist, that God can take it.  God can handle the truth.

Comedy:

This week Stacey and I discovered a great example of lament on the radio.  It was a lament delivered by comedian Tig Notaro.  We heard her on NPR talking about this stand-up she did days after being diagnosed with breast cancer and a number of other tragedies in her life. After hearing the interview (and the one with Louis CK who talks about her performance) I downloaded the entire stand-up act (available for $5 at https://buy.louisck.net - worth every cent).  Her 30 minute set is one of the most real things I have ever heard.  It is in fact/effect a sermon on lament.  Tig handles many aspects of cancer in a funny, but honest way that causes the crowd to beg her not to switch to lighter material - which speaks to our cultures need for truth telling, the very thing at the heart of lament. Tig tells the truth.

The radio interviews can be heard at:
http://www.npr.org/2012/10/08/162514763/standup-comic-tig-notaro

http://www.npr.org/2012/10/08/162514765/louis-c-k

Reality:

I don’t like to share my emotions...in fact I'm beginning to wonder how in touch I am with anything I feel.  I'm a  Dutch stoic, who is reserved and reluctant to share anything too deep.  It has become clear to me in the past couple weeks that I'm having a hard time keeping the car that is me, between the lines on the road that is my life.  While this blog is about Stacey's journey through cancer, let me assure you the things I am lamenting are far beyond that single topic.  It seems that seemingly every area of my life right now is uncertain and challenging.  I have been lamenting a good deal of the time.  I feel angry, lost, tired, overwhelmed, helpless, sad, and blessed often in the span of 30 seconds.  That is the reality

Joel K

Neulasta sucks

Round three didn't start out so great.  My white blood cell counts were down so they gave me a shot of a drug called Neulasta to boost cell counts.  Also, our family has struggled with a bought of strep throat so I also needed the drug to fight off any possible infections.

Well, it sucks!  My dad has had to have this shot with every one of his treatments and now I have even more respect for him than before.  My muscles have never felt like this before....I cannot even describe exactly what the soreness/achiness is like other than its lousy.  My bones ache, my head feels like it weighs 500 pounds and of course I feel the normal chemo side effects of constipation and a bit upset to my stomach.  So I admit it....this time I feel like CRAP!

So my goal for next round is to EAT BETTER.  Anything I can do to have my own body regenerate itself is ideal.  We bumped up my treatment by two days for round three to accomodate my work schedule so having the two extra days for round four may be all I need.  I never want to have to have this shot again.  I have one more round of A/C to get through then I move into a weekly treatment called Taxol.

Round Two After Effects & Thank You's

Overall....not too bad, or maybe I just don't even know what it feels like to feel really good anymore!

I called in sick two days of work.  So I think I will have to accept the fact that between the physical ailments and/or the emotional stress this causes, I'm just not going to be able to work a 40 hour week the days after treatment.   And that is OK!

It's an amazing thing that this terrible disease, which affects so many people and can cause so much pain, can also bring one to such as state of gratitude.  When I think of the love and grace that has been extended to our family I fight back tears (because you know I'm mostly Dutch and I cannot let people see me cry =).

To all of you who have made this all bearable (hopefully I didn't forget anyone):

The Dykstra family for bringing French Dip on the day of treatment.  Jessica Louwerse (you should ask her for her Salmon Chowder recipe!), Kristen Bierma, and Mandie Dykstra who brought dinner on Friday and completed the evening with pedicures!   Lori Bingham who so strategically provided beef stew the day after a cold, windy, rainy day at the cross country races! The Henke family for providing tacos with FRESH salsa! And the Kuipers for providing enchiladas, which the kids even ate because they weren't too spicy!  Laura Tucker, thank you for coordinating it all.  I have honestly only cooked one meal in 10 days!

The gift of meals extends way beyond this last 10 days too... Fred Thompson for an awesome chicken dinner, Beth Nightingale for super spaghetti, the Henke's (again) for the catch of the day-grilled salmon, Sharon Visser for chicken enchiladas & spaghetti sauce, Krista Sandhoefner for breakfast burritos.  A basket of bread fit for Paul Bunyan from the Partlows.  Wait, it still doesn't end..... gift cards to Papa Murphy's, Subway, and Olive Garden (which is yet to be spent...do we dare wait till the Dimond restaurant opens?) from the Tans's and Gardiner family.  

It's not just dinners either.  To those of you who have been helping provide rides and entertain our kiddos a special thank you to you as well.  Narda Butler, Denise Hopewell, Mandi Dykstra, Jessica Louwerse, Carla Dudley, and the Harvey family...

It's not just dinners and transportation but huge surprises that come in the mail and help financially!  I think they know who they are so I will keep that private. May you know how grateful and humbled we are...

Not to mention a pastor who shaves his head!  That was very brave, Dave VanBerkel...


Family friends, the Velderman's, who know all too well that when I have "extra" time on my hands and should be resting, instead, get a little bored and decide to hang family photos that were taken a year ago.  In all honesty though I usually start the project and Joel has to finish them!  Thank you for the Michael's gift card to make this happen...

Erin Jettenburg for sending reading material that made me perpetually hungry! Flowers from Hurtado's, Kotelman's and Laurion's to brighten my day.  Monica Grossman for sharing her headwraps, Sharon Visser for her head shaving expertise and a swanky new fedora, Co-workers who have to deal with all my sick days...

My mother-in-law, Nancy, who provided a lifetime supply of hats and bandannas. My Aunt Sue and her church (I'm sorry, I can't remember the name of your church Aunt Sue) who knitted a prayer shawl...

Joel, Naomi, Emma , Katie Alley, and Mike Alley who run in races wearing I "heart" Stacey's Boobies" pink shirts (sweet Emma even wore it to practice one day & was kindly told it wasn't appropriate at school =)...

Sydney who loves to give me makeovers with all the makeup from the American Cancer Society...

Parents, brother and sister's who provide airline tickets, entire new wardrobes, manicures, and pedicures...

And to all the prayer warriors out there...I cannot imagine doing this without all of you.  May my good Lord bless you and keep you and may HIS FACE SHINE UPON YOU!

And this is the crazy thing... I just may have forgotten someone!  To you, know I'm so filled with gratitude!

Stacey

Not Your Typical Anniversary Date

Joel beat me to this post!

Today was round two of treatment and our 17th wedding anniversary.  Quite the date, huh!  I agree with him but he failed to add:

I love you even when we plan not to do anything for each other this year and he still gives a gift & I don't.  I'm such a looser.  He deserved the gift of all gifts this year and as always I didn't even give him a card. (we really play opposite roles when it comes to gift and card giving...I'm the dude in the relationship and he gets the shaft)

So because I failed to give him a gift or a card this will need to be my gift.  Unfortunately, I'm not feeling 100 percent and may have a bit of chemo fog so hopefully the words will make sense.

Joel has been an amazing husband and dad and he is not told often enough.  Sometimes (like our first year of marriage) I had these feelings of AAGGGGHHH why did I marry this man.  Why did I move to AK?  Is this really the man I was suppose to marry?  Well, those AAGGGGHHH moments have calmed over the years and are basically nonexistent anymore and these past few months have only proven why I don't even ask the questions anymore, except the one about why do we live in AK!  This man loves me even though I'm a bald, one boobed, overweight, slightly depressed, negative, complaining individual who doesn't even buy him a card for our anniversary.  He washes dishes, does the laundry, carts the kids here, there and everywhere, pays the bills, takes care of broken cars and trailers, runs Parachutes, leads the church, and much, much more.

Yes, he has some flaws as well but overall I think he's a keeper.  I praise my Sovereign God who always knows what I need the most and thank Him for blessing me with my husband.

I love you Joel!  Here's to another 17..... in sickness and in health!

In Sickness & Health...

17 years ago Stacey and I were married.  In that ceremony we vowed to love each other in sickness and health.  As I sat next to Stacey today during her second chemo treatment it occurred to me that when I said those words I had no idea what it meant.  What does any 22 year old now about anything your committing to in your wedding vows?  Looking back I think the vows should have been more specific.
Something like:
Do you promise to love your wife when she looses her hair?
Will you go to a wig fitting?
Can you adapt to the changes brought by surgery and chemo?
If you need to will you empty fluid drains and shave your wife's head?

I would have still said yes (she was so cute I would have done anything she wanted me to), but I think more specific vows would have made the 22 year old me think a little harder about what he/I was getting into.

If, in some weird twist of time a space, I could sit down and talk to that young me, ready to walk down the isle, I'd tell him it will all be worth it - the sickness and the health.  We often take the health part for granted, I know I do.  However, it is the sickness part that has taught me so much and made me love Stacey more than ever before.

Happy Anniversary / Happy Chemo Day - in sickness and health - in the good and the bad.

Joel K

and the Answer Is....

Day 13!

I had just cut my bangs because quite frankly they were just getting too long and for obvious reasons I wasn't going to pay for another haircut.  I took a shower and after as I started combing my hair I realized more was coming out than what is normal.  It is just crazy that at one moment the hair was not falling out and the next it was...just crazy.

A friend from church who just happens to be a hairdresser was willing to shave my head at her home.  So after a baby shower taking place at her house that same night and some encouragement of my friends we gathered in her basement and had an impromptu hair shaving party. Thank you Sharon for the best ever G.I Jane haircut, Laura (& Claire) for sharing your shower with a shaving, and to everyone else for your much needed encouragement!  I have a beautiful community of people supporting me through every part of this journey.

Before

After

 ps...I hated the stubble so Joel had the honor of shaving the rest with the razor the next day.

Day 10 & 11

Well, I have officially made it through the period of time my oncologist stated most people loose their hair so I no longer feel the need to keep you posted!

How
             long
                       can
                                 I
                                         hold
                                                        on!

Day 9

I heard from Joel's grandma Kiekintveld, who recently fought colon cancer, that her hair loss was gradual.

IF it comes out I would much rather it happen all at once....the anticipation is a killer.

Day 8

Still have hair!

ps....Hair loss occurs within 7-10 days.

A Chemo Survival Tip

August 30, 2012- Chemo Round #1

Don't take a laxative!!!!

Chemo can either constipate you or give you diarrhea...I had both, which of course, was my own fault.  Of course, if I drank the recommended 3 liters of water I might feel better but who can do that???

I have had a few other issues.  One is I can be kind of, shall we say, obstinate when it comes to taking medications.  I'm not really a fan.  I have two different types of anti-nausea meds and just have not figured out which ones to take when.  For two days I didn't want to take either because I thought they make me tired but then I feel a little queasy and have raging heartburn (I was not told this was a side effect so I'm going to ask because maybe it's in my head???)  So, either be so tired you're almost comatose or feel kind of like you're in your first trimester....what would you prefer???

Another issue is that Chemo can kick start menopause.  Guess what, THAT DIDN'T HAPPEN.  Some may remember my body works like a clock!


In all reality though I did survive and it has now been seven days since the first treatment.  Joel had us prepared with 2 movies loaded on the iPad for the infusion.  We didn't even make it through one.  I swear they told us it would take 4-5 hours.  It lasted about 1 1/2 for the actual infusion!  After that, we went home and I felt just fine.  I even was able to take care of our favorite little neighbor Ava!.

On Friday after school we left for a weekend at our friends Patti and Loren Skinner's beautiful log cabin on Long Lake in Willow.  Let's just say it was very restful.  I slept...a lot!  To be honest there wasn't much else to do because it also rained....a lot!  Fall is here in AK, and though I'm trying to appreciate it, I'm not sure I'm ready for it.

I even managed to work almost two entire shifts leaving a tad early on Tuesday.  Now have a three day weekend!

So today, Day 7, I'm feeling better and I still have hair (my dad does not & he's posted great pictures on his website http://www.carepages.com/carepages/Riversdream).

And guess what....at this moment, THE SUN IS SHINING! God is Gracious!

Harley Rides and Four Mile Walks

MI is muggy and when you have a plastic boob it feels even muggier!  Yet, I will take the muggy days any day to have the opportunity to ride a Hog with my dad as the driver and spend the early morning hours on a four mile walk with both him and my sister.

We spent three beautiful days at my parents home on the Muskegan river (a place they call the Rivers Dream Gathering) basking in the sun, floating the river, eating tons of food and enjoying friends and family.  My dad only had one "rough" day where he was extremely tired and not feeling "quite right" (because you know your suppose to feel spectacular after three rounds of chemo treatment!). After the one rough day he was back to being Bert coming alive when surrounded by a community of people who love him so dearly.  I hope and pray I will have only half the courage my father has.  Another huge kuddo to my mom as well who continues to keep working and serving everyone around her.  Nothing but beautiful and a treasure that will always be remembered.

Times with my girls and polish on nails, receiving a gift from my greatest of pals...

When the cat pukes, when the kids yell, when I'm feeling sad.....

I simply remember my favorite things and then I don't feel so bad! 

Thank you Amy and Mel (& families) for giving us something to good to remember!

A conversation with Syd

Yesterday I walked in to the house from work and asked, "Where is everybody?"

Sydney replied, "Emma is on the couch.  Naomi is in the shower. And mom is picking up her new boob."

The best part is it was all said like it was the most normal thing it the world.

Joel K

Headed home...

to MI that is.

Funny how when I'm in AK, MI is home.  When in MI, AK is home.  It's always kind of been this love/hate thing when it comes to living here.  I love many things about AK.  Like, I can go to the store without makeup or have been known to go even when I haven't even showered and I don't feel out of place at all.  I love the mountains and cannot imagine living in a state without them.  They are so majestic and when I'm hiking through a valley or climbing a mountain that is where I feel God's presence the most.

Unfortunately.....

it's cold and dark for nine months of the year and it happens to be 4,000 miles away from family in MI,

and did I mention its cold and dark for nine months of the year.  Joel and are in a debate about this...he says six months!  For those of you who don't live in AK the snow can start falling in Oct. and is here until breakup (that's April).  Decide for yourself!

However, even more unfortunate is when those nearest and dearest to us are diagnosed with this terrible disease and I'm living so far away and the only way home is with an over priced airline ticket.

But God is gracious and my brother is generous so I'm headed home to MI.  I will be home August 23-29.  I look forward to shedding a few tears, both joyful and sorrowful, but hopefully the majority will come from laughter.

There are a lot of things that no one tells you about cancer OR Community is like Barium Sulfate

There are a lot of things that no one tells you about cancer/breast cancer.  

First off cancer is boring.  You sit and wait, A LOT. 

Second everyone gives you a gift bag.  Some are wonderful and thoughtful items from friends and loved ones, and some are handed out by medical people and are packed to overload with information in the form of DVDs, books, pamphlets and brochures.

Third, MRI machines sound like ray guns from a B-grade Sci-fi movie.  Seriously.   Who knew?

Forth, courage is beautiful, more exquisite than any breast.

Fifth, tenacity is really, really sexy.

Sixth, Community is like Barium Sulfate (or another substance: gadolinium which is number 64 on the periodic table and has the symbol Gd).

Barium Sulfate is given to people who are having a CT scan done (gadolinium is given for MRI scans).  The idea behind drinking this thick, chalky looking white paste (which they claim is way better cold or over ice) is to coat your internal system so that is shows up more clearly on the scan.  Drinking the Barium Sulfate helps expose what we know is there but rarely see.  In this way I think cancer has acted like Barium Sulfate in the lives of our family, exposing the community around us.

I'll be honest, in most of the circles I'm in, the word community gets used so often, and in such haphazard ways, that it often feels to me like it has no meaning.  On the other hand I wrote part of my Masters Final Project about it, so it must have some value in my life. :)  I think my main frustration is that we are not just part of A community, but a community of communities.  And here is where the Barium Sulfate of cancer has been a gift to us as a family.  As we bounce through our normal everyday lives we don't think all that often about the communities we are a part of.  Our family has community in our home, in our extended family, in the churches we are a part of as members / past-members/ / missionaries, we are part of the Parachutes community, the Dimond Estates Community, the Facebook community, the Anchorage community, the Klatt Elementary community and on and on.  What Stacey's diagnosis of cancer has done is expose all of these communities that we interact with daily that so often go unseen and give us a picture of the systemic nature of our interconnected reality.  Ok, that was a bit thick...I mean to say that it has given us the gift of seeing something we can only sense in normal times - the love of all the people we are in community with. 

Some see cancer as a curse, and it is that, but it is packed with blessings that can only be seen from the inside. One of those gifts, for us, has been seeing the communities we are a part of come to light in very tangible and visible ways: people from church that we've never met making us dinner, all of you reading the blog like its the New York times (for real, over 4,500 views in the first month is a bit overwhelming), cards daily in the mail, e-mails from acquaintances in Guatemala (hi Liz), creative offers of support like driving the kids to sports, family willing to travel to help out, Parachutes friends that have moved to Miami texting prayers (hi Saul), wise words from normally taciturn elders, gift cards from friends in Iowa and Nicaragua (Hi Jake and Steph, Gordon and Peggy) and so many more indications of community glowing in the light of this struggle.  Its an overwhelming, profound and precious thing to be able to see your communities this way.

May you too see all the ways your connected, loved, and blessed.

Joel K

When the Rubber Hits the Road

Words really cannot describe the emotions I feel right now.  My mom left town early after my surgery to be home for my dad.   My dad has had a painful cough and a CT Scan found a mass in his lung.  On Monday he had a biopsy and the test results came in a few days later.  My dad was diagnosed with small cell lung cancer.  With this type of cancer surgery is not an option and he will begin chemotherapy and radiation right away.  So, I guess we are going to be cancer chemo buddies.  Not how I really dreamed of becoming even closer to my dad.

I guess the title comes from my thoughts in regards to my faith.   When the rubber hits the road where do I stand in my faith?  Faith is still a choice. We have to choose to believe God is in this and through it. We have to choose to find our peace through the storm.  God is always there, hovering over this chaos we call life.  We cannot understand His mysterious ways but we can choose to stay under His wings, feel His protection and know that He is God.  In a previous post I mentioned all I felt was this void.  In hind sight maybe that wasn't the best word choice because even though I was somewhat void of emotion I have still had this overwhelming sence of peace.  Even now with my dads diagnosis and the challenges our family is facing God's grace and peace is abundant.  I hope and pray my dad is able to dwell in this as well.

Enough of my rumblings about faith.  We have a chemo plan.  My first infusion is scheduled for August 30.  Three more will follow after that (Sept, Oct, Nov).  Once this round of meds are complete I start another one that is every week for 12 weeks.  I also started physical therapy today.  It felt good to be doing something proactive.  I know I will look forward to these twice weekly sessions.  I am healing well trying to understand and accept the new way I feel (or don't feel as the case may be) and trying to be patient through it.

Again, as always, I sign off being very humbled with all the support and encouragement everyone has sent our way.  I'm continuing to get cards, books, and prayer shawls in the mail, encouraging phone calls and offers to help with all our daily ins and outs of life!   Thank you!

Grace and peace to all of you!

My Selfless Mother

There is one person in this world who I find to be the most unselfish person I know.  That peson is my mother.  What an example of motherhood she is.  This women rarely thinks of herself and her desires (except maybe her love of beading - everyone deserves to be passionate about something and even in this she's always wanting to teach others how to bead and make things to give away). She flew here at the drop of at hat for our family.  She scrubbed our floors, tubs and toilets, washed our clothes and dishes, feed us entertained our children, hand trimmed our lawn since our weedwacker is broken, mended my wounds, hugged our fears away, laughed at "singing cats" outside (our personal joke),  and always tries to understand things that just don't make sense.  Just as quick as she was to respond to me she was as quick to jump on a plane to get back home where she is needed too.

I'm very proud to call her my mom.  I hope and pray that I will carry on her greatest qualities.  Her ability to laugh at her mistakes, her selfless attitude, and her incredible passionate love for God and her family.

Thank you mom!

The pathology report is in, the drains are out!

Today was a very exciting day!  It has been one week since "Thing 1" was removed.  The greatest part of the day was having the two drains attached to me removed.  Though not a very pleasant experience to have them expelled from my body the end result was well worth the misery.  I am sitting on the couch typing away without my lovely little "hand grenades", as we liked to call them, filling with fluid and other very interesting bits and fibers from within.

On Tuesday we also learned eight lymph nodes were removed from my left auxilla (armpit) two of which were cancerous.  The mammogram (and other tests) had only confirmed one.  The largest lesion was 2.0 x 1.7 x 1.5 cm.  There were other smaller lesions and the report stated "innumerable satellite tumor nodules" were identified.  If I understand correctly this is what Dr. Sanford meant when she said, "This boobs a goner."  There continue to be suspicious lymph nodes in the sub pectoral (chest) muscle. These nodes were not taken because they are in muscle tissue and chemotherapy and radiation will zap em!  In the big scheme of things this is all good news and nothing was worse than what was expected (other than two auxilla nodes had cancer not just one.)  It also appears the cancer was still all within the "margins."  Again, if I understand everything correctly, this means it wasn't in skin or muscle and was all within "margins."  You may need to call the doctor to get the correct info though :)

The quote of the day comes from the nurse with oncology rehab who stated, "Your going to lose all your pretty hair."  You see, for me this is a good thing, dealing with reality.  While at the Girdwood Forest Fair and Downtown Market I decided against buying a cute hat thinking, "why buy a hat...I might not even lose my hair."  I officially give myself permission to buy a cute hat because I'm going to lose all my pretty hair!

Again, I cannot brag about Joel enough.  He has been an incredible partner in our journey.  Empting  my lovely drains, watching me wince in pain when they removed them, checking the incisions, washing my hair, and all the wonderful jobs that home nursing entails.  What a hero!

One More Step to "Normal"

Since the surgery on Wednesday this lovely medicine ball has been attached to me SLOWLY pumping a numbing medication to my incision.  Today I decided enough was enough (and the meds were out) and Joel slowly removed the two catheters freeing me from one of the three sacs attached to me.

One down....two to go!

Surgery Update(s)

3pm - we just saw Stacey's doctor and the surgery went well. She is recovering and we will get to see her soon.

430pm - she's got a room (456-D) so I guess she's spending the night. Still waiting to see her.

500pm - in her room, a bit dazed, but doing good.

930am - day after surgery
After a good night of recovery, Stacey is resting and eagerly awaiting a visit from the surgeon and her discharge from the hospital.

300 pm - day after surgery
Arrived back home and is resting as comfortabily as possible.

Stacey's Cancer Timeline

Sitting in the waiting area as Stacey has surgery seemed like a good time to write out a time line of the cancer process as it has happened so far. It started a lot longer ago than the 41 days from her first visit to Dr. Kolb to the mastectomy that is in progress as I type this.

February 25, 1972 - Stacey is born.

1982
Stacey begins becoming a woman and thus developing breasts.

2004
Sometime during this year a cell in Stacey’s left breast likely divides in an abnormal way for the first time. The doctors, and the literature, tell us that from the time the first cell divides till the time a 1cm lump is able to be felt in the breast it takes 2 to 8 years, with most people believing it takes the longer amount of time.

2012
June 5 – 13 (sometime)
Stacey discovers a lump in her left breast during a self exam while on vacation in MI. She did not have a pattern of regular self-exams, but figured that she had the time on vacation. (don't wait for vacation, give yourself a regular exam!)

June 15
Stacey goes to see her regular doctor - Dr. Kolb, who feels some "tissue thickening" and recommends a mammogram be done.

June 22
Mammogram and Ultrasound are preformed. Concerns continue and a biopsy is ordered.

June 27
The biopsy is performed and initial indications are that the tumors are cancer.

July 2
Following the evidence of the biopsy it is clear that there are 4 areas in the left breast area that contain cancer - 3 tumors in the breast and one in a lymph-node under her arm. The Diagnosis of Cancer is made by Dr. Kolb and an appointment is made to see a surgeon the next day. It also becomes clear during this visit that concern is heightened for Stacey because she is young for breast cancer, it has moved outside of the breast and the type of cancer she has.

July 3
Met with Dr. Sandford, a Breast surgeon specialist, for the first time. She encourages a genetic test (which comes back negative a week later, meaning the girls are less likely to get breast cancer than if it was positive) and orders a breast MRI to explore the extent of the cancer.

July 10
We meet with our nurse navigator - Shirley - for the first time. The girls Jon us for this appointment. Lots of good info.

July 12
Breast MRI is performed. This visit is noted for the wonderful instructions "when you climb up on the bed you will lay on your stomach and place your breasts in the slots on the table."

Also this day we got the results of the MRI. While there was a panic in the house this evening because Stacey told he girls and I, while still on the phone, that "the cancer is everywhere" and later explained that it was "everywhere in the left breast and impure lymph-nodes" - a pretty big difference. The good news was that the right breast was clear. Dr. Sanford was concerns enough to cancel our backpacking trip and have Stacey see the medical oncologist the next day about chemo before surgery. This phone call is now famous for Dr. Sanford declaring that "that boobs a gonner."

July 13
Met with the Medical Oncologist – Dr. Smiley - for the first time. This visit is notable because it is the first discussion of the stage of the cancer. She determined that she was at a clinical stage of 2 or v early 3. Tis is not a final stage for the cancer, that is the pathological stage and is determined after surgery when the tissues have been examined. Dr. Smiley confirms that Stacey's Cancer is the opposite of the dreaded "triple-negative'" but should not be referred to as triple positive, and that because of this there are a full range of chemo and hormone therapies available. She explained that chemo would start a month after surgery and would last 24 weeks, working in a 3 week cycle. Following that hormone therapy will last one year. Finally, she explained that she saw no reason to believe that the cancer had spread beyond the Brest and lymph-nodes, but ordered blood tests and a CT scan to make sure.

It was determined that chemo was not necessary before surgery.

July 16
CT scan performed.

July 17
second meeting with the surgeon at which a left modified radical mastectomy is recommended and a surgery date of July 25 date set. We a.so learn that Stacey will have a hand grenade or two connected to her after surgery...ok, not real ones, but the drains will look like grenades. We learn that the CT and blood wok show no signs of the cancer spreading.

July 18
We meet with the Radiation Oncologist – Dr. Blom - for the first time. He explains the radiation treatments a d also shows Stacey her MRI & CT images. She is super happy to see he film. We also see Shirley again and Stacey gets a look at a prosthetic breast as well as getting a nice special recovery jacket. The girls all wear the jacket at different times over the next couple of days.

July 19
First meeting with the plastic surgeon – Dr. Cole. Options for reconstruction discussed. We looked at a good many reconstruction before and after photos.

July 23
Pre-register for surgery - mostly a paperwork and pregnancy test pop-in o the hospital. We are not expecting.

July 25 = Modified Radical Mastectomy of he Left Breast and Mediport installation performed by Dr. Stanford.

For those keeping track it is 40 days from Stacey's1st appointment with Dr. Klob till surgery.

This time line will be updated as we continue through the process of treatment.
Joel K

Void

On the night before surgery I think I'm supposed to feel something.  In all reality I feel somewhat of a void, nothing.  I imagine people would think I would feel scared or maybe even "more spiritual" because in hard times like this one can become more aware of God or your faith.

I don't know how to feel to be honest other than this is all very surreal.

One thing I do feel is gratitude.  I feel grateful for:  My dear friend Denise taking our girls and "entertaining" them throughout doctor appointments and during the surgery tomorrow.  The endless cards, letters, emails, posts, gifts, and comments.  The support of my community at church, at work and other women who have shared their stories with me.  The Parachutes volunteers and co-workers who are putting in extra time so Joel does not have to work.  My mother, who traveled 4,000 miles and spent many, many airline miles to get here on such short notice as well as buying the nicest shawl ever along with the most expensive tank top on earth (secret pockets no extra charge).  My sister who has literally read the entire "Dr. Susan Love's Breast Book," who searches online ABOUT EVERYTHING, sent me special clothes, and really, really wants to buy a wig (can you guess what sister that is?).  My other sister who managed to get me a prayer picture she drew halfway across the world and who is agonizing over the fact she isn't closer.  My brother who encourages me with words like "boobs are over rated anyway."  My dad, who is not a phone talker,  has called me more than once!  My children, who like me, don't always know how to put into words what they are thinking or feeling but who hug me more, want to cuddle in bed (every night), cry when they tell a friend, wear my special new clothes around the house, or say nothing at all.

And lastly, my husband, who has read, watched videos, seen many portfolios of reconstruction (not very erotic), taken endless notes when the doctors are spewing information that I can easily remember at the appointment but once I walk out the door it's all jumbled.  He has held me when I cry and makes silly jokes to keep the laughter alive.

Thank you for praying, thank you for loving, thank you for giving.

In twelve hours from now at 11:30am "Thing 1" will no longer be.

Stacey

A whole new meaning to my nickname

Many, many years ago my father nicknamed me.  There is a story behind it and it has nothing to do with a being a dog but it has always stuck.  Now, other family members and those close to me still call me POOCH!  Last week Thursday I met with a plastic surgeon, Dr. Cole, and of course the consultation was to talk to me about breast reconstruction and ALLLLL the options available to me.  One option I have is to perform what is called a TRAM Flap (isn't that a lovely name) where they take tissue from the belly to create a new "Thing 1."  More commonly known as a tummy tuck.  Throughout the conversation Dr. Cole kept referring to my "extra weight" as my POOCH!  Inside my soul I chuckled every time.  Oddly enough I also learned for the first time in my life carrying a little extra weight is only to my advantage!

I got some new tattoos....kind of

O the things you can do with a Sharpie marker! I left the surgeons office today with lovely drawings marking areas of the boob for the plastic surgeon.

The surgery has been scheduled for Wednesday, July 25. We do not know the time yet. There is so much information regarding our decision with what to do that I have decided not to bore you with all those details and just let you know we have decided to do a Modified Radical Mastectomy of the left breast. There is no cancer in the right at all and at this point in the process they just want to deal with the diseased area. After surgery, chemo, and radiation (IN ABOUT A YEAR FROM NOW) we will decide whether or not to remove boob 2 and/or reconstruct boob 1 and boob 2. (Shall I call them Thing 1 and Thing 2 from now on =). There is no real good data to support removing Thing 2 but because I'm young and the type I have (invasive lobular) many women with similar situations chose to remove the other boob as well . Most women chose to do it just for peace of mind and aestetic reasons. There really is little reason to remove it for medical reasons.

Some good news is the CT Scan came back "prognosis negative." Other than a few cyst and spots here and there & some gall stones which apparently are all very normal everything else is lookin good!

Tomorrow we meet with the radiology oncologist and Thursday with a plastic surgeon. The reason to meet with everyone even though some of the other treatments don't take place for a long time is because every other week all the doctors (radiologists, oncologists, plastic surgeons, breast surgeons)meet to discuss current cases. Mine will most likely be discussed at the next meeting so they want me to meet with all of them before this meeting so they can go over the best plan of action for my case, which for the most part has been decided, but it's nice to know I'm part of a "bigger picture."

Thank you so much for all your support! The emails, the cards, the letters, posting on the blog, wearing pink to church.... it's huge and I'm very grateful!

Also, for those of you outside of Anchorage, or for those of you who live here but have never had to go, this is where I'm spending many of my days. It's a beautiful campus. I promise...all pictures will be rated G!

Don't Carry it All

In the best of times music is something that is important to me, but in hard times it becomes a form of soul care. Since Stacey's diagnosis music (along with running) has been helping me process things.

The day we heard the news I bought a new CD. The purchase was unrelated and earlier in the day, but ended up being a very good choice. The CD, "The King is Dead" by The Decemberists, opens with the line "Here we come to a turning of the season." While that line clearly relates to our lives right now as we enter this new season, there were more lines that reached out to me. Here are a few.

- "And it's 1, 2, 3, on the wrong side of the lee" (we are defiantly on the stormy side right now)
- "The season rubs me wrong"
- "there are times life will rattle your bones, and will bend your limbs..."

However one song has been the most significant for me. It is the first track on the CD, "Don't Carry it All." It contains the lyrics that continue to minister to me and the lines that first caught my eye as I opened the CD case - "Let the yoke fall from your shoulders / Don't carry it all, don't carry it all" & "A neighbor's blessed burden within reason / Becomes a burden borne of one and all...And you mush bear your neighbor's burdens within reason." These are powerful lines for someone like me. My response to most adversity is to just work harder, longer, more aggressively. I am not someone that easily shares their burden or gives pieces away to God or others. I figure that I can make it happen by sheer work and will power. Cancer doesn't work like that.

Opening "The King is Dead" two weeks ago and reading "Let the yoke fall from your shoulders / Don't carry it all, don't carry it all" was the voice of the Spirit telling me to let go of my control issues and trust God with this mess, but it was more, it was a reminder that we are not in this alone. Many people have decided that our families burden is theirs as well and are bearing our burden within reason. The outpouring of Facebook posts, blog responses, calls, texts, e-mails, hugs, wearing of pink in the church service, lists of people wanting to help in anyway they can, and the many other responses have confirmed in us that we are in no way alone as we go through this valley. It is a gift that goes beyond words to visibly be able to see the communities you are a part of - near and far - be so tangible in your life.

Thank you for bearing our burden along with us.

Joel K

Plan A, no Plan B, no wait, back to Plan A

Well, we are back to the original plan!  Getting confused yet...join the club!  After meeting with the oncologist today Dr. Smiley is very confident the cancer has not spread to other organs and having the surgery before or after chemotherapy does not really matter.  We decided to go ahead with surgery first and chemotherapy after.  I guess this means I will have to get one more haircut because chemo treatments start one month after the surgery and my hair is getting out of control!  Some decisions still need to be made.  For example, deciding to go with a bilateral or single mastectomy .  This is totally a preference decision.  There is no cancer in the right breast and the chance of recurrence is the same whether or not I chose to keep it.  If  I decide to do reconstructive surgery what are the pros and cons of removing one or both, etc..etc. 


For people like my sister Lisa who are just not satisfied "guessing" whether or not cancer has traveled to other regions, a CT Scan is scheduled for Monday, July 16.  I also had blood drawn today to test whether or not it could possibly be in the liver or bone.  Dr. Smiley also clinically (not pathelogically) diagnosed the cancer as Stage 2 with a possible Stage 3.  Surgery will give a more definite answer depending on how many more lymph nodes are affected.  Either way, it still considered to be somewhat of an early catch.

We did not receive a call back from the surgeon today as we had hoped so there is no date as of yet when the surgery will be but we are thinking possibly next week sometime.

"That boobs a goner..."

These are not my words but the words of my breast surgeon! Just as the family had been pretty much packed and ready to head out for our backpacking trip the phone rang and it was Dr. Sanford's office with the MRI results. Who knew I would actually get the results the same day of the test? Unfortunately, the results are not too good either. The doctor stated that all four quadrants of the left breast are littered with lesions and there are more suspicious lymph nodes. Dr. Sanford referred me to Dr. Smiley, a medical oncologist (not sure that is the correct spelling of her name but as Naomi stated saying her name just makes you feel better). So now I am meeting with the oncologist today (Friday) to talk about chemotherapy treatment before surgery rather than the original plan of surgery first. What this also means is that the entire left breast needs to be removed, hence the title "that boobs a goner!". There is some good news too. There is no cancer in the right breast and Dr. Sanford does not feel it needs to be removed (it is still an option for me to remove the right one as well to be on the safe side...and if I chose to do reconstruction to have matching boobs as well:) The backpacks are still packed and sitting in the living room (if only we had a garage)and maybe we will just keep that way till next weekend. I must also admit I wasn't looking forward to camping in the rain so postponing the trip may have a bright side. I've been trying to read "Jesus Calling" by Sarah Young. I must admit I really have to try and overcome the feelings I have of the "fortune cookie" writings or the fact that this book is the new "Prayer of Jabez" but it did lead me to this verse this morning...."Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be complete." John 16:24 I've been asking for peace in that the decisions we make are the "right" ones and that I can move on feeling confident about it. The MRI was very conclusive, black and white and the radiologist and breast surgeon are not second guessing anything. For me, that's an answered prayer.

Like clockwork

Well, because my cycle is like clockwork, I am now able to move on with the next step in our journey. I am scheduled to have an MRI this Thursday @ 12:30pm. I will not know the results that day & it will be another waiting game until we find out the results from that test. I'm scheduled to meet with the surgeon again the following Tuesday to go over the results from the MRI and make some decisions regarding surgery. I know some (mom) are anxious to get on a plane and be here for me but you'll have to hold your pants on a little longer yet! I plan to spend the time waiting by backpacking with Joel and the girls. Thanks to everyone for your prayers, thoughts and words of encouragement. It has been very uplifting and must really be working. I feel very at peace with what I'm facing other than the occasional thought of "holy crap....I have cancer!" and luckily so far those thoughts are fleeting and pass by quickly. Stacey

And so it begins...

While vacationing in MI I decided to use my extra little time to feel myself up!  Ok...actually I just decided maybe I should do a breast self-exam.  Surprisingly enough I thought I actually might have felt something a little abnormal on the left side.  Not really a lump but definitely different than that of the right side (maybe that's why there is two so we can compare and contrast!)  When I returned home I decided I should make an appointment for my ANNUAL exam that last took place three years ago!  Dr. Kolb confirmed there was "tissue thickening" and was concerned enough to schedule a mammogram.  The mammogram and ultrasound found three lumps in my left breast and one in a lymph node. A biopsy was performed and on Monday, July 2, I was diagnosed with invasive lobular carcinoma (breast cancer..obviously).  



Today, July 3, I saw a surgeon, Dr. Sanford at Alaska Breast Care and Surgery for a consultation.  At this point we still do not know much more than what we already knew.  We did learn that I have a somewhat more invasive cancer due to a really high count of the "Her-2" protein (I may have told some of you it's a gene but after reading my new boobie bible I have learned it's a protein).  The tumor has also been given a "grade."  The tumor is grade 3 (this does not mean I have stage 3 cancer - grades and stages are not the same) which unfortunately is the worst grade I could get.  Basically what I understand this to mean is that grade one would be a cell that didn't look that much different than what a normal cell looks like, grade 2 is MORE unlike what a normal cell looks like and grade 3 would be MOST unlike a normal looking cell. We learned this is another clue that it is a more invasive cancer and something that should be taken care of soon.

Basically we are still trying to put together a huge puzzle.  We've taken all the pieces out and have managed to put together the border.  Now...we just need to put more of the pieces together to get a better picture of what this really looks like.


Our next step is to have an MRI done.  This will give us a more accurate account of where the cancer has spread. We don't know the date of the MRI yet because oddly enough it depends on the female menstrual cycle (too many hormones can skew the reading).  I won't go into more detail than that because that would just be TMI!  

The past days have been filled with tears, and believe it or not laughter, at our house.  The girls have cried, I've cried, Joel has cried.  Nothing prepares you for telling people you have cancer or listening to your daughters tell their friends and burst into tears.  On the other hand we keep laughing as well.


If you are interested, make the blog a favorite and join us on our journey.  For those of you pray that would be cool too!

Until next time....Stacey