10 second update....

Per usual...

too many things to do and not enough time to blog.

Kyle went back to chemo on Monday and his blood
work was really good.

Good enough to do BOTH the Gem. and the Cis.

So he sailed through like a champ and turned 
greenish grayish yellowish and had a million visitors to 
keep him company.

They loaded him with extra steroids and Benedyl
and at one point he broke out in a small rash on 
his face and ears (which contrasted nicely
with grayish greenish yellowish hue and so it
alerted the nurses to it quickly.)

The doctor was called and they made him stay for 
an extra half hour to make sure he was not going
to get any worse.

We are at Thursday and so far, good.

----------------------------------


On a fluke chance Kyle's mom found out about the
first ever Cholangiocarcinoma gathering here in 
SLC, Utah up at the U of U campus.

Big wigs, little wigs, doctors, moderators from
the CC.org board and a whole bunch of people
gathering to talk about this cancer.

He hung out long enough for someone to notice him
and as it turns out he will get to sit on the back
row of this fabulous gathering tomorrow and listen
to what's happening in the world of CC.

I told him to take notes.

----------------------------------

Life is busy, I can hardly catch my breath 
between work and school.

Kyle is pretty wiped out from chemo during his
"on" weeks and we're looking forward to one
more round Monday and then an "off" week.

---------------------------------

We're grateful to friends that have kept us fed.

We're grateful for people being willing to
grow and stretch and learn with us along this
journey.

---------------------------------

And by george that's what I've got for today.

(It was longer than 10 seconds and I'm off
to class in the rain!)

Go Big or Go Home

Well, the news is in.

Kyle called the doctor this week to find out 
the "new chemo plan"
since I cannot attend chemo with him anymore so that
we could talk about whatever decision the doctor made
and see what we thought before Monday when Kyle
heads back to chemo again.

(that is a terrible and long run on sentence...
which I don't have the energy to fix and re-write.)

Dr. S. wants to try and push Kyle through this 
last round* of Gem/Cis (even with, and in spite of,
his poor blood counts and bad reactions now).

(His plan could change at any given point however
depending on SO many factors.  Remember: cancer = rolling 
the dice, a lot.  So he's rolling big.  
Go big or go home, right?)

(*A full round would be 2 weeks on and 1 week
off for 3 sets--so 9 weeks total.) 

Clear as mud?

The most telling news will be if he survives this
next round on Monday.  I say that in jest (hopefully!)

I told him to take someone with him to chemo
to keep an eye on him since we know
of two people who had "the next round" of this chemo
AFTER an allergic reaction of hives and went into
anaphylactic shock in the chemo chair. 

(doesn't that sound fun? no, it doesn't)

So they will watch him closely and send him home
with an extra steroid pack to fight any chance
of hives again and/or anything else this could bring.

The big test will be his blood work pre-chemo to
see if his numbers have bounced back into the 
"normal he can get a full dose of both chemos" range.

So we're off to see what Monday brings.

Fingers crossed for good blood work.

Fingers crossed for good reactions.

Fingers just crossed.

Always.

-------------------------------------

And in NON cancer related news?

I took my math mid-term today.

I got 96% people.

In MATH!

96%!

(And no I didn't cheat.  Which incidentally
is the first question my sister asked me! ha ha)

I studied hard and cursed a little under my
breath and plowed right through my test.

I still hate math, but I will not let it win! (ha ha)

I am pretty darn proud of myself.

---------------------------------------

And that's what I've got for today!

We're BOTH going big and not going home just yet.

(thank you very much!)

Satisfied

Today is Valentines Day.

Not a holiday I am particularly fond of honestly.
Nor is Kyle.

But it is what it is.

This year, we have circled around to our (almost)
one year anniversary of being diagnosed with cancer.

(The exact date is March 6, but who's keeping track?)

As I drove home from work today (I got off 2 hours early
and THAT was a present in itself) I reflected on the
many many many many many changes in our lives this past
(almost) year.

Sometimes my head spins at the thought of what has
transpired.  Who knew it was humanly possible
to SURVIVE so much change?  Who knew?

I went from a full time stay at home mom who got
to shop, and clean, and exercise, and go to lunch
with friends, and make dinners, and birthday cakes
and be a helper at school in my kids classrooms...

...to a full time employee and a student in college
and the wife of a full time cancer patient.

I learned new words and new chemo's and new jobs.
I met new Doctors and nurses and made new friends.

I learned the depth and breadth and height and width
of BOTH joy and pain that I never, ever imagined possible.

My heart has grown and constricted and shared
and felt, more deeply, than it ever has prior.

I have cried and laughed and wept and loved and 
beat my fists at the sky.  I have reflected and
planned and hoped and fought.  I have hugged
and kissed and held and comforted.  

I have gotten up on days when I did not think 
it was possible to get up and keep going--- 
and I have kept going.  

Kyle has done the same.

We have done all of those things hand in hand
as a family.  Together.

(Who, for the record, are the loves of my life.)

Today as I drove home from work, I felt gratitude.

Kyle has had a NASTY body rash/hives since chemo on 
Tuesday and has felt (literally) the most miserable
he has felt since he started chemo that (almost)
year ago.

Today he finally had to call in the big guns and
get a presciption to help him heal.  The Benadryl
was just not cutting it and he couldn't sleep or
rest or feel better.

Two hours later he texted to say he ALREADY felt 
better on the new med's and I felt satisfied.

Satisfied because my long hours at work mean he
gets medicine to help him feel better.

Satisfied that my efforts were paying off and 
actually helping my family.

Satisfied that we still have the option 
of having him feel better.

Satisfied that I got an extra 2 hours with my 
family today AND (AND! AND!) a 3 day weekend.

Satisfied that he's still here, and alive, 
and fighting, and willing to keep fighting
and living and trying--despite it all--he's
still willing to play the odds and keep rolling
the dice.  And so am I.

And so on this holiday for lovers, I give a shout
out to mine for having more courage and endurance,
and hope, a good heart that CONTINUES to put
other people before him, even now.  Even when I
tell him he's insane.   It's just who Kyle is,
it's in his DNA.  I expect that's how it will
be to the bitter end, and he deserves big points
in my book for that quality.

In the words of the Avett Brothers:

"Always remember there was nothing worth sharing
Like the love that let us share our name"

I'm so glad I share my name with you.

I'm so glad we are the Nielson family.

I love you my Valentines.

Kyle and Josh and Grace and Eliza and Oliva,

and of course Ruby the doodle.

And that's what I have for today.

(And now off to fall into my sugar coma!)

Hiccups in the Road ....along with some Hives.

We know that in life things don't always go as planned.

In cancer? 

Multiply that by 100.

Kyle tried to have his 2nd round of chemo in this
new cycle and for the first time ever his blood
work did not "bounce back".

Meaning his numbers were less than stellar.

His counts were sub par.

His blood was not pro-creating the way it should be.

The Doctors and nurses had to consult and make
a decision yesterday and they decided to ax
the "Gem", of the duo formerly known as the "Gem/Cis"
chemo brothers.

We thought THAT had gone well (the just getting
the "Cis" chemo) until a few hours after Kyle
got home from The Ritz Huntsman last night when
he started to look like Will Smith from "Hitch"...

...in the scene were Will looks like a deformed
human who has broken out in a series case of the hives.

Kyle's body was swelling and contorting into all
sorts of new shapes, red and bumpy and raised.

His eyes were swelling shut, his feet, his elbows, 
they were everywhere.  Hives. Everywhere.

We called back up to our favorite cancer spot
and they told him to get some Benadryl in his
system ASAP and called in a steroid for emergencies.

The hives have come and gone over the past 24 hours.

Appearing and reappearing in new places as soon
as the Benadryl wears off.

It looks like Kyle's body may be DONE with 
this chemo combo and the deadly, yet effective,
combination of chemo may have reached its
Max Time allowed in Kyle's body.

So we have started down the road of "hiccups"
after a long time of pretty "Smooth Sailing"
in this road of cancer.

We're not sure what chemo will come next.

This is the "Frontline" treatment....other chemos
have worse side effects.  Other chemos have
been less effective on this cancer.

There are a lot of unknowns now and as a hater
of unknowns, this leaves me a little (lot) more
worried and on edge.

We are stepping into even MORE unknown territory
here on the CC journey and that is scary.

So there's where we're at ...off to give Kyle
another dose of Benadryl....his eyes are swelling
up like balloons again.

Hives, hiccups and changes...

That's what I've got for today.

Voices of Cholangiocarcinoma: #4 A Best Friends Voice.

My Old Comfortable Pair of Shoes

Dorien asked me to share some thoughts about what Kyle’s cancer experience has been like from the perspective of a friend.  Seems like a simple enough request but quite frankly it’s complicated.  I think to better understand how I have been dealing with Kyle’s diagnosis and treatment you have to have a little background on our friendship.  So, I take you back to Granite Park Jr. High when a gangly kid showed up as a transfer from Union Middle School (that was Kyle).  We seemed to gravitate together despite the fact we were a bit of an odd couple with Kyle topping 6 feet tall and me standing tall at 5 feet (if I was wearing two inch heels).  Just in case anyone thinks I may be exaggerating for effect I have included a photo of our GPJH volleyball team where I am standing right in front of Kyle…as far as growing I was pacing myself!

Kyle and I grew closer as friends during our high school years as we played: football, baseball and basketball together at Granite High.  I could write pages and pages about our escapades during our high school years but just in case the statute of limitations has not run on some of our actions I will omit the details.  I spent many days and nights at Kyle’s home and he at mine.  We spent our time playing sports, going to $1.00 Tuesday movies at the Mann 5-6-7 theatre, backpacking in the Uintah Mountains and talking about what we wanted to be when we grew up.  They were great years and served as the foundation of the solid friendship that we enjoy today.

Kyle, who was a year ahead of me in school, graduated and headed off to college and a year later, as I was graduating, was called to serve a LDS mission to Milan, Italy (which coincidentally is where Kyle met his true best friend, his wife Dorien).  After Kyle had been out on his mission for a year I began my LDS mission service in Seoul, Korea. We exchanged letters faithfully during the course of our missions and shortly after my return Kyle married his best friend and sweetheart Dorien.  I was the best man at his wedding and 9 months later he was the best man at my wedding.

We drifted in and out of one another’s lives for the next 20 years or so exchanging Christmas cards, talking periodically with an occasional lunch mixed in.  Sometimes years would pass between our conversations yet we would pick up right where we left off.  It was as if time and frequency of contact had no effects on our friendship.  The best way I can describe the friendship that I have with Kyle is to compare it to an old comfortable pair of shoes.  Now that may seem odd but you all know that you have that pair of shoes in your closet right now that fits your foot perfectly.  Over the years you have tried out other pairs of shoes that may be more flashy or expensive yet when you have to take a long walk or work in the yard you go back to that old comfortable pair of shoes.  And, when you slip them back on your foot it’s as if you never took them off.  Kyle is my old pair of comfortable shoes.  They are always there for me waiting patiently, never jealous…always faithful.  I love them…I need them.

Now I don’t want to romanticize the relationship that Kyle and I have.  We never had a Jerry McGuire “you complete me” moment, nor did we steal away under the old sycamore tree as kids and use a rusty pocket knife to stab our fingers and make blood oaths to one another to always be there.  In fact our relationship is such that none of these things ever had to be spoken they were just understood.

So nearly a year ago when I received a call from Kyle letting me know of his diagnosis and worse yet his prognosis I went through a whole range of emotions:  anger because he was so young, fear of losing my good friend and hopelessness in the fight against a cancer enemy that never sleeps.  Interestingly enough I also felt gratitude for my relationship with Kyle, I felt compassion for his beautiful wife and family, I felt an incredibly sense of perspective of what is truly important in life and I felt an overwhelming desire to love and to help however I could. 

I committed myself at that point that my rallying cry would be “no regrets” as I did what I could to help my friend.  I have no idea how long I am going to be able to be with my friend…it may be months or it may be years.  But, when Kyle does move on to his next assignment I am committed to have no regrets.  There will be no words left unspoken, no regrets about not spending enough time with him.  In the past I would have passing thoughts about giving Kyle a call or going to lunch and then would get busy with life and let the thought slip away.  Now, when I have those thoughts I call or we go to lunch.  When I start to think “I am too busy to make a chemo visit this week” I remember that my old faithful pair of shoes are not going to be around forever…and I go to chemo.

I know in the long term that my friend will be fine.  There is not a kinder soul on this earth nor one with a more generous heart.  The heavens will welcome him home when it is time.  I also weep bitterly for all of us that remain behind that will soldier on through life’s experiences without our old comfortable shoes.  I selfishly want to fill my canteen with Kyle memories and experiences so I can weather the drought that will inevitably come.  I would encourage everyone who reads this blog post to consider a “no regrets” policy with your loved ones.  They may not be named Kyle Nielson and they may not have stage 4 cancer, but they will not always be around so please don’t take them for granted.  Make the call to that estranged sibling that you have not talked to in years, tell your best friend that you love them and don’t be afraid to offer forgiveness generously.

My friend is dying…I can mope and feel sorry for him, and myself or I can make hay while the sun shines.  I choose the latter and I hope that you will too.

I love you buddy!

That’s what I’ve got for today.

National Cancer Awareness Day

Hey Guys.

I'll admit it.

I'm pooped.

It's been a long, hard haul for me (I'm a wimp and a
baby and freely admit both).

Starting a 40 hour a week work (8-5 everyday)
is long and new and different and wipes me out.

Doing school (math this semester) is slowly
turning what's left of my brain into mush.

Oatmeal.  Cream of Wheat.  The stuff
a 6 month old baby's diet is made of.

That's my brain now.

But we press forward.
(And by "we", I mean "I")

Tomorrow is National Cancer Awareness Day and
February is Cholangiocarinoma Awareness month.

It's only fitting Kyle is putting on his
(green) "Cancer Kicks" AKA running shoes
and heading up to the Huntsman "Cocktail Lounge"
AKA Clinic 2A, or the "Infusion Room" tomorrow
to continue on with chemo.

I'm sending him off alone while I go to work.

Brain Mush + Heart Twinge = Sad wife/mother.

Someone go keep him company please.

Bring him a treat.

Or lunch.

Or tell him a joke and make him laugh.

And so, we (and by "we" I mean "we") go 
forward into "Battle Mode" again and see
where it takes us.

I had strep this weekend and spent the entire
two days in bed feeling sorry for myself.

My throat was on fire.  I couldn't talk
or eat or swallow.  The one day (Saturday)
I save and cherish for Kyle and a "date"
was scraped this weekend in favor of me getting
better by staying in bed.  (No sick days at
work yet).  So in bed I stayed, napping
and generally feeling miserable.

But there *IS* great news in all of this!

What is the "GREAT NEWS" you ask????

As of Saturday we now have Medical Insurance 
again--so that means I can get treated.

And Kyle can get treated and so my long hours
of work and being gone all day are paying off
in a big way.

Work = Insurance for my family.

And that my friends is good good good news.

Even "Great News."

Show your support of someone you have known,
or loved, or love, or have lost, or are supporting now
and send them a message and do something
to remember them.  Hold them in your heart, tightly,
closely, this month of remembrance.

And that's what I've got for today.