That's All Folks!

Hopefully anyway!

This past Thursday my very last Herceptin treatment was administered.  No more $12,000 little baggies of drugs dripping through my veins. No more one inch needle pricks.  Early December my port will be removed (I hope they let me keep it)... Can I get an Amen?!

I have decided to hold off with reconstruction at this point.  There is so much to say about this I just don't even know where to start but as for now I'm content to not go through more surgery, spend more money, and just work getting back to "normal."  After a couple of consultations and being told it is something I can chose to do at anytime I decided that was the best plan for me.  Take a deep breath and decide later!  

I guess it's been difficult to be ecstatic because it really never is the end, is it?  I think most of you cancer survivors can empathize.  The thoughts continue to linger.  You always wonder.  I'm afraid I am on the verge of becoming a hypochondriac.

But as for now all is well.  Let's pray there will not be a sequel!

I am alive!

I know...it's been a while!

Originally I had planned to do a weekly blog with the progression of my hair gain and hopefully my weight loss.  (I think the suckiest part of chemotherapy was the steroids they give you so you are not nauseous.  I know it helped but I also gained weight).  Well, the hair is growing back but I cannot say the weight is coming off!  And they all said it will come right off....yea, right!

Here is the final product of chemo

Wow...I look weird

No eyebrows or lashes

Much better with a little make-up and a hat!

Two months later.  My own hair, eyebrows, and lashes!  (Still working on the weight loss!)

I am still undergoing radiation treatment; every day, Monday through Friday.  As of today I have six more of a 33 treatment regimen.  I am experiencing fatigue, a lovely burn in my armpit and my chest wall itches like crazy.  The really bizarre part is that directly under my armpit I have no sensation when you touch the skin.  For example, lotion does not feel cold but when applied to the armpit but on the chest wall it's very chilly!  It's a good thing I cannot feel much directly under my armpit because if you saw it you would think I was in complete misery.  Today the skin broke open so now they have given me wonderful gel bandages to put on...hopefully it will help.  The most difficult thing is when I'm laying on the "bed" with my arms over my head for the "zap."  The skin, muscle, and scar tissue stretch and it is very uncomfortable.  I have even started doing some breathing therapy when I lay there to help me through it.  Think of the most inflexible person in the world doing yoga!

I know only six more treatments sounds like it is close to the end but unfortunately the worst part of radiation occurs about one to two weeks after the treatments are completed.  This means the worst is yet to come...yikes!  On a good note after next Friday I will only need to head to the cancer treatment center once every three weeks for the continuing Herceptin treatments.  These are very short (about one half hour) treatments that are administered through the port. They continue until November.

So there ya go!  Forgive me for not posting more often.  As always, we are very grateful for all the support and encouragement from you all.

Stacey

Time To Laugh

As so many of you know my LAST chemotherapy treatment was today, February 6, 2013.  It was hard to believe way back in July that this day would come and here it is.  Funny how time works like that.  I still have radiation to conquer, whats left of a year of intravenously administered Herceptin treatments (till November 2013), and a 5 year regime of Tamoxifen (hormone therapy in pill form) but I have been told the most difficult part is over and for that I'm ecstatic!

When first diagnosed there was actually quite a bit of comical relief.  When Taxol started I really could not find much humor in it any more.  Now that I have the ropes you have all thrown in the pit, and I can hear voices leading me out of the tunnel, I may find some things funny again.  I am not afraid to embarrass myself to spread a little laughter.

We have shared many funny moments around the dinner table.  Particularly my kids think I have very expressive facial expressions right now.  I think it has more to do with the fact I have no eyebrows.

I now fully understand what George Costanza meant when he mused that "Moses must have been a picker."  I have had a terrible issue going on in my nose...for months.  At first I attributed it to dry AK weather.  I think that one of the lovely gifts from chemo is that my dry bloody scabs cannot heal.  I recently had a funny moment in this area.  I was on the couch and had to blow a plethora of  boogers out.  I knew one had been projected out of my nose and did not make the Kleenex, but could not find it anywhere.  I woke up in the morning and Emma declared that something NASTY was crusted onto my robe.  It was the booger.  I knew it went somewhere!  We shared quite the laugh. (BTW...they are quite large boogers and are very annoying so forgive me if you see me desperately needing to clean house)

Taxol can cause arthritis type symptoms.  I'm not joking, I feel like I'm 90 years old.  I can barely tie my own tennis shoes.  My kids find this VERY funny.  I do not.

When we are driving and we see the left headlight out on a vehicle we laugh.  It's a whole new meaning to Popeye!

One morning Joel mentioned I looked a little swollen, to which I replied, and patting my left upper torso, "everything is swollen on my body...except for this boob."  This is now Joel's favorite quote.

Naomi calls me cyclopes.

There are more stories but I think the boogers and the swelling are embarrassing enough and you really would not want to hear about any more ailments!

As always, I'm very grateful for all of you.  Joel requested letters, cards, emails, Facebook posts, texts, etc be sent my way during this last day.  I received hundreds and really was not able to reply to all of them.  I hope you all read this post and know how beautiful and meaningful it was to receive the blessings in so many ways.  I have an amazing support system.  Thank you!

Lastly, I serve an amazing God.  My prayer is that all will see how Great He is and it is Him who deserves all the honor, power, and glory in everything and forever.

Keep Calm & Carry On

It has been a while since a post so I thought I'd throw in my two cents...

Last fall I had lunch with a friend I only see occasionally.  During that lunch I shared all that was going on with our family.  Towards the end of the conversation he said something to me that has stuck with me for months - "You are a duck.  You look calm on the surface, but I bet underwater your paddling like crazy."  I think this has stuck with me because it is true.  I've wrestled for years with my internal belief (fostered, in part, by the stoic community in which I was raised) that being a good leader means not freaking out in a crisis.  This belief causes me, in my public and professional life, to, more often than not, remain rather non-plussed by everything.  This gets me in trouble because this restrained emotion can come off as being aloof, distant, uninterested, upset, or even angry.  I've used this restrained approach, admittedly my default, throughout our families journey through Stacey's cancer and other recent challenges, but under the surface I've been paddling like crazy.

I think one of the reasons there has been no post in this space for over a month is that at some point the treatment of cancer becomes a daily reality.  It just develops into the life you are living.  Nothing much seems like news or breaks into the routine with a revelation.  Each weekly trip to chemo bleeds into the last.  Doctors talk about patients getting "chemo brain," a foggy headed feeling and some very minor short-term memory loss, but I think those close to the patient also develop a bit of a foggy brain too.  A brain that is just a bit numb to the whole thing after a while.  Everyone's attitude moves quickly from the shock of  diagnosis ("Is the really happening?"), to the resolve of early treatment ("We are going to beat this thing!"), to a very level "Keep Calm & Carry On" (that great WWII British statement of unemotional resolve and determination - those posters were meant to improve morale!) of ongoing treatment.  We are deep into the "Keep Calm & Carry On" phase.  

I have woken up many mornings in the past few months with a song in my head.  The track comes off one of my favorite albums of last year Some Nights by Fun.  The song that my brain has often brought me into a new day with is Carry On.  The chorus states:

if your lost and alone

or your sinking like a stone

carry on

may you past be the sound

of your feel upon the ground

carry on

I have never once felt alone on this journey.  However, I have felt lost, and like I'm sinking (I've described it to friends as feeling like I'm drowning).  Frankly, most days I feel like the best thing I can do is carry on.  Simply keep moving one foot in front of the other - keep my little duck legs paddling like crazy under the surface and staying calm above water as best I can.  Sadly the calm is mostly broken by yelling at the kids who are themselves just trying to make it through the mess.

Stacey has two more chemo treatments.  That portion of the journey ends on Feb. 6.  She tells me everyday how much she just wants to feel normal again.  Once chemo is done its on to radiation, and continued hormone therapy.  

Paddle, paddle.

Step, Step.

Keep Calm & Carry On.

Joel K.

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