THE CANCER THING

Ok.  So we´ve been at this cancer thing for a couple months now.
Are we doing it better?  Nope.
Are we living in victory & anxious to tell about it?  No.
Are we bonding like never before as a family & responding in the Spirit to one another?  Not exactly.
Do we love serving each other & do it without complaining?  Sometimes.
Have we gotten over the habit of talking about it too much?  Nope.
Have we stopped reacting inside when people ask us the same questions every day?  Hmmmm.
Do we live within peaceful limits and self-care boundaries?  Hardly.
Are we remembering to have fun?  Not so much.
Is Jenna better?  Not sure.
Has Jenna accepted her protagonism in this drama?  Not really.
Have I fallen in love with advocating all the time at the hospital?  I hate that!
Do we have a richer, healthier marriage because of this difficult time?  I wouldn´t call it that.

Cancer brings a lot of stress.
To every member of the family.
It takes over conversations, energy, time, work, friendships, your prayer life and well, basically,
everything.
It is not fun.
It is not easy.
We did not ask for it.
I don´t see God´s wonderful plan in it (yet).
I am tired all the time (and so is everyone else).
I don´t think any of us feel more mature.
I feel disconnected with my friends.
I feel like I have no energy for my son.
My husband and I have a hard time making decisions about work with all this in the forefront.

I wish I could be more positive today.
I wish I could tell you that Jenna just spent two weeks in the hospital and that she gained 5 kilos, there´s a glow back in her cheeks and she has energy to read & see friends & draw & pursue things she loves, but I can´t.
She just spent two weeks in the hospital to gain weight and didn´t!
She´s supposed to ¨get stronger¨ before chemo and now they are pushing it down our throats, saying they can´t wait any longer!
I wish I could tell you that we´re feeling more confident about heading into the challenges of chemo.
I wish I could say we love her endocrinologist and oncologist.
I wish....a lot of things.

But today I mostly wish I could hide from the pressure, the uncertainties, the unanswered questions.
I see her struggle with the stress that is on her to eat, to count every calorie, to gain weight and it breaks my heart.  Eating used to be fun.  Eating used to be satisfying.  Eating used to be pain-free.

Life has been changed forever.

I see our family struggle to adjust to new realities, different routines, weary bodies & shorter tempers.
We have a 20 year-old and a 22 year-old who wish they could be out living their lives and are back under their parents´ roof.
We have a 12 year-old that enjoyed being the central focus as an ¨only child¨ and who is now the ¨baby¨ of the family again.
We are parents of 3 kids at home again but it is all so weird...

We are also parents of someone fighting for their life.
We´ve never done this before.
But we are all fighting with her.
It is right to do so.
We want to do so.
We would not want to do anything else right now.
But every day is a challenge.
For each one of us.

Is God with us?  Yes.
Is He giving blessing each day amidst this madness?  Yes!
Do we believe tomorrow could hold a much prayed-for miracle?  Yes.
Are we aware of answers to many prayers? Yes.

This, all of these things- and more - represent ¨The Cancer Thing¨ that we do now.
We do it every day.
We will keep doing it every day until she is cancer-free.
Until we bring her home and say ¨No More.¨
Until we stand before Him and say ¨Thank You that we´re done,¨ ¨Thank You for healing,¨ ¨Thank You for being with us through this valley.¨
This ¨Cancer Thing¨ will someday be history for us - and then we will comfort someone else.


Photo by:  joshuaBENTLEY

AT THE TOP OF KILIMANJARO

What do you say to someone you don´t even know who went on a Cancer Awareness climb and took your daughter´s name to the top of Mt. Kilimanjaro??  Are there words for this?  No!

Here it is, the highest point in all of Africa from the Kenya side...

Through a friend of ours who knows them and knew of their trip, Jenna´s name got on one of their banners and even though she´s not an official cancer survivor yet, she sure plans on being one!! 

So here are Claire and Jeremy at the summit:

Claire Simmons Jungling & Jeremy Jungling

In Uhuru Peak, Summit of Mt. Kilimanjaro (5,895 AMSL)

How cool is that?!  God is just blowing me away!

Somewhere on this flag is Jenna´s name:  Future Cancer Survivor!!!

But mostly, we are all aware that though this fight takes great human effort 

(and we will never look at a cancer survivor the same way again), that:

the Battle is the Lord´s, 

it is His Grace & Healing that will make this possible,

  whatever Victory we share in will be His,

 that the Greatest Banner ever for us is of our Salvation, 

and that His Banner over her is: Love - always & forever.

Thank YOU, amazing Victor over Life and Death, the Lord Jesus!




Photos by:  Ian Macfadyen, fsong, Yonni Lerner, ralzayani

TODAY I JUST WANTED

Today I just wanted to curl up in His lap

I just wanted to sleep

Just wanted to shut out the world

Today I just wanted someone to take care of me.

Today I just wanted to be small & helpless

I just wanted to not be responsible

Just wanted to be carefree for a while

Today I just wanted someone else to be in charge.

Today I just wanted to wake up from this dream

I just wanted to change channels

Just wanted to fast forward

Today I just wanted to live in a different season.

Today I just wanted to see a miracle

I just wanted to see her healed

Just wanted to take her home whole

Today I just wanted to have cancer be gone.

Today I just wanted a different path

I just wanted to change this plan

Just wanted another journey

Today I just wanted something out of reach.

Tomorrow I just want to feel His big love

I just want to hold His Shepherd hands 

Just want to fall in love again & laugh

Tomorrow I just want to walk in this valley with Him.

Photo by:  that edit girl

IN FRONT OF THE RED SEA

The difficult experience at the hospital this week, with the goal of getting nutrition into Jenna and helping her gain weight, has kind of ended at an impasse.  I won´t bore you with details of things that happened and what went wrong and why this week became a disaster (you can read that under The Latest).  I will just say this:  this week the only two options for giving Jenna additional nutritional support other than by mouth (which so far she has been unable to do), were ruled out. It was a very hard hit...

After getting the NG tube out (which Jen found physically unbearable, psychologically demoralizing & which only worked 50% of the time we´ve been here), we were anxious to talk to the Drs about another option called a J-tube, a feeding tube directly into the small intestine through the abdominal wall with a button-like outer port for hooking up additional nutrition.  This option would allow her to receive additional calories at night while she sleeps.  A number of people have asked us if this had been presented to us as an option.  But Jenna is not a candidate for this because of the recent radical surgery and the hot localized chemo wash that they did inside her.  There are a number of potential complications that made them give us a definitive NO to that idea.  We were really disappointed.

In the afternoon at one point I told Jen I felt like the Israelite army stuck between Pharaoh´s army and the Red Sea.  We can´t go back and we can´t go forward.  We are completely dependent on God to come through with a miracle for her. There is just no other way...

We cried together and asked important, difficult questions like:  how can things be going worse when so many people are praying?  What does that mean?  Is there a ¨greater glory¨ He´s holding out for that we can´t see?  What difference are the prayers really making?  What would happen if no one prayed?  And other, even more agonizing questions:  Why does God not seem to be helping her?  Why is she just getting worse?  Why has He not seemed to go before us this week in the hospital - we just seemed to drift from problem to crisis to issues to miscommunication to any number of dysfunctional hospital operations.  Every day was exhausting.  Every day we were fighting a system, I was having to advocate way out of my comfort zone and we are both exhausted.  It would be worth it if we had some answers but we don´t!  Plus she weighs the same as she did Monday when we started here!  (At least she has not lost weight.)

So today as it stands, Jenna´s nutrition must happen by mouth.  For this, we need a miracle.  For this we need issues resolved, like why is her vomiting increasingly worse and she has not held anything down at all for 3 days?  How can I possibly take her home like this?  We first need to know why she can´t keep things down never mind, if her body is assimilating them!  It´s so frustrating to think it all depends on us again...then again, this means there is plenty of room for God to show up!!

Yesterday they had her do a barium test to watch how food travels through her system.  They could definitely see reflux right where she complains about pain when she eats -  the barium went down, then up again.  But it took 5 hours to go all the way through her system!  All afternoon in radiology...

Waiting for the barium to go down...

Jenna´s insides on the screen...cool, huh?

The yummy barium she had to drink (took her an hour to drink it!)

It´s basically like liquid pink chalk!

Waiting, waiting, waiting...

Today they told us that the good news from the results of this test is that the esophagus is clear and it appears that it needs no repair.  But her intestines are reeeaaaallllyyy  slooooow (probably due to the localized chemo during surgery) and so we are trying a medicine this weekend to see if it helps with that.  They also recommended trying a carbonated drink (normally not recommended) to see if that would help.  So we are trying that to see how it goes.

So far, we have tried the medicine with no success.  The first time she got it down but then the food came up.  At dinner, she threw up the medicine before trying to eat anything!  So much for that!  But they insist we continue to try it to see if some kind of build-up in the system will bring any change.

We pray for change...we pray for miracles...

Since they took out the NG tube they put her IV nutrition.  However, in peripheral veins on the arms it is hard work for them to accept the heavy nutrition.  She developed phlebitis  in both arms already and we are already on a 3rd IV in her arm.  These swollen, red veins are sore and she developed a low grade fever as well.  We may have to go to a main artery.

The Drs are very focused on calories - however she can get them!  They insist anything she eats be accompanied by olive oil (100 calories in 1 soup spoonful).  Plus, prepared protein drinks, sipped very slowly (these are very nasty but whatever).  So far, we haven´t found one that sets well with her but will keep trying.  This is her new best friend (& 2nd best friend):

 Would you keep praying with us for resolution on these complex issues and for us to find things that stay down and put weight on her?  We want her to get stronger, be healthier, have more energy - for there is still much ahead of us.

THANK YOU.  We are indebted to all of you who keep us on your minds and share our burden!

Photos by:  deekrebs33, bsburnsie,  Jeanne Menjoulet & Cie

NO MORE DONORS PLEASE!

Since these weeks have been all about relearning to eat and trying to figure out ways to get calories into our (already thin) Jenna, many of you have graciously offered to donate some kilos to her. Haha.  She wishes she could accept!  (You wish she could, too!)  We have such an overage of willing donors that I wish I could invent a way to make this work...we could end world poverty and malnutrition and win a Nobel Peace Prize together!

Anyway, this week´s big campaign in the hospital is to to pump in a prepared liquid nutrition to help her gain weigh through a nasogastric tube (through the nose to her small intestine) .  This is key for her overall health, energy and well being and also in light of the upcoming 5 or so months of chemo and their unique challenges on the body.  Once the machine got going (you can read about the rough start under The Latest), it´s purr has been music to my ears.  They´re starting out slow, 500 calories over a few hours, to  see how she tolerates it and so far so good.  We are thankful for that! Plus she can have liquids by mouth a few times a day.  There will be a steady increase on that as well.  We are seeing various doctors on different days and these conversations have been helpful on a number of levels: endocrinologist/nutritionist, her GI surgeons and the oncologist.  The nurses have been great and have warmly welcomed her back.  ;)

The NG tube has been a much bigger ordeal than we thought and the first day all Jenna wanted was to have them take it back out!  It is very uncomfortable, gives you a sore throat, runny nose and having to have it taped to your nose makes it utterly obvious!  (Somehow we thought it would be this tiny little tube you could just push behind your ear with your hair!)  It is a bit unsightly.  But I think she makes it look as good as it can...

                                                   

                

         

We´re happy in her room where it is very quiet, we have space for visitors, we can spend the night and where brothers can study!

She´s trying to keep busy but isn´t very strong yet.  Concentrating or reading is still difficult.  Her Uncle Ted is busy copying Downton Abbey, The Office and any number of movies for her to keep her distracted.  Her friends are texting and writing on fb and visitors (when she´s up for it) come by.  

Hopefully, we´ll take this contraption home as we get more used to it and settle in there.

Bruce is still in California visiting his Mom who has fallen and broken her other hip.  Poor thing.  His sister has been monitoring this, knowing we have our hands full.   She is very tired and not wanting to do rehab again.  She is just ready to be in heaven at this point.  Please pray with us for peace in this situation for our dear Grandma.  God´s timing as the Author of Life is perfect and loving.  May we all experience His peace during this tender time.

L to R:  Bruce´s sister Donna, Dani, Grandma, Bruce in a visit on Saturday

Dani is our cuddlier; she always love to climb into bed and get right next to Grandma!

Thanks for all the love & support; you guys have been amazing and have helped us stand during a most challenging 2 months.  We are so grateful for you!!



Photo by:  wmakashutdown5

GRACE THAT IS MINE

This grace that is mine

has been greater and greater

confounding the world

As it works in me.

There is no explanation

For its patient expansion

Its discerning perception

Of where it should be.

It´s a mystery I ponder

A wonder observed

It swells like a wave

That I ride upon.

It never runs out

Like the sea it is endless

Its limitless increase

With each new storm.

Through sadness, discouragement

Grief and exhaustion

There is more grace waiting

at every new turning

I thought I knew grace

Indeed, I have seen it

but the darker the season

The deeper its fullness.

There is grace in the wilderness

Grace in the dark

Grace in all weaknesses

Grace in the shock

There is grace in the walking
 And grace for the falling

Grace for my sleeping

And grace at the dawning.

Grace is the mystery today I consider

Its greatness, its vastness

Its limitless measure

The gift that is given

So I can continue.

The light that displays Him

In generous detail

This is the grace that is mine.



Forever thankful.

Special note:  In the walking out of Jenna´s cancer we have also been processing my brother´s death (Feb 2nd), the fall of my dear mother-in-law and her 2nd broken hip with its ensuing difficult recovery, the upcoming anniversary of my father-in-law´s death (March 16), a change in our job requiring additional travel and responsibilities for Bruce and all the other normal, day-to-day challenges of international life and work.  I share this carefully - not to arouse pity for us but to say this:  if His grace can be real & tangible for us today, it can be for you, too.

¨But he gives a greater grace.¨

James 4:6

Photo by:  Imag(in)e Mind

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NURSING TO PERFECTION!

 
We have met a number of nurses during this time and I don´t really mean to stereotype them, but they are falling into certain categories:


The Sugar-and-Spice-and-Everything-Nice Nurse

This is the one whose every sentence is punctuated with Honey, Sweetie, Love and everything sickly sweet.  They also talk in plural.  ¨And how are we doing today, Love?¨ This nurse is like the great aunt who always pinched your cheek at Thanksgiving.  However, no matter their affectionate vocabulary, they still have needles as long as everyone else´s!

The I-Have-a-Job-to-Do-Here-Let´s-Get-it-Over-With Nurse

This nurse is all business.  Don´t try to start a conversation, ask a question or otherwise distract their mission.  They went into this profession for the medical piece, not the people.  They seem to have skipped, flunked or slept through the Bedside Manners classes.  They may be good at what they do but they´re not good at relating to who they do it to!

The Positivist Nurse

Jenna calls these the ´chirpy¨ ones.  They are happy little morning birds full of enthusiasm at all hours.  No matter your ailment, they know some way it could be worse!  No matter your pain, ¨oh, everyone feels that way.¨  Whatever your symptom, (new and strange as it may be to you), ¨that´s completely normal.¨  No matter your emotional state, ¨Look on the bright side!  You only have a week left!¨ You feel like every emotion is minimized and every unique pain to you is normalized.  Chirp, chirp!

The I-Was-Supposed-to-be-a-Dr-but-Had-to-be-a-Nurse-Instead Nurse

You can recognize these nurses immediately by their superior air around everyone else.  Any question or doubt from a patient or relative is met with a confident medical mini-lecture in scientific lingo that sails over your head.  They are in their glory as they wax and wane eloquent medicine.  Blah, blah, blah.  If you need something that is ¨beneath¨ them, they undoubtedly order someone else around!  We call them the Dr. Wannabes.

The I-Am-on-the-Last-Hour-of-a-12-Hour-Shift-and-I-Don´t-Give-a-Rip! Nurse

You gotta give ´em credit.  They´ve put in a heck of a long day. They can either be a total, exhausted grouch or giddy at the thought of leaving within the hour!  Either way, there is a robotic style to their movements, they are on the home stretch and NOTHING is going to get in their way.  Not even you, dear patient.  We watch these ones carefully; often we know more what they´re supposed to do at that point than they do!

The Mystery Nurse

This nurse likes to hold all the cards.  Since information is power, they seem to enjoy keeping you in the dark.  Their responses and answers are curt, to-the-point and never feel sufficient.  Sometimes they speak in vague terms as if you understand nothing.  They whisper to your caregiver in the hallway while keeping you wondering.  If they say they´ll get back to you, they never do - they just string out the wondering & the mystery.  We´re not sure if this is a cruel game, a personality type or a sign of caregiver stress but when it comes to our health, we don´t like mystery!

The Annie-Oakley-Shoot-it-Straight Nurse

The opposite of the Mystery Nurse, this nurse has a vicious appetite for shocking the crap out of you!  Whatever your need, she not only ¨calls it like it is¨ she calls it what you don´t want to hear.  Ever.  She is a master of matter-of-fact, delights in the crude, is apparently emotionless and while it may be said with a smile, it is a kind of Cruela Deville smile.  At least you can´t complain about not getting the bottom line.

The Perfect Nurse!

Our personal favorite is the friendly, informative, helpful one.  This nurse tries to help you retain as much dignity as possible (even though they´ve seen/done it a million times).  They go beyond the call of duty to find answers to complicated situations, they get back to you when they say they will and they take time to explain stuff that´s everyday for them.  They engage with you if you seem to be in the mood for it and have a good sense of humor.  They are willing to find out what they don´t know and to take time to share what they do know.  They believe you when you say ¨it hurts¨ and they do something about it.  Too bad not everyone can be perfect!

Nurses have a tough job and we really respect that.  It can´t be easy working with people in pain.  Or with their bodily fluids.  Or with people who think they know more than you because they spent 1 hour on the internet.  Poor them!  However, they apparently have all their own ¨types¨of patients and things they laugh about, too!  Whatever category we fit in, I hope we can keep a sense of humor and try to be the ¨perfect patient¨!

  



Coming Soon:  The Perfect Dr.!   hahahaha