Answers: PART FIVE

Q:  Dorien- do you think you will ever get over the anger? Do you feel like your whole relationship is consumed with the cancer now, or is there any sense of normalcy for you guys?
Kyle- how do you deal with the emotions of knowing you might miss so many milestones in your kids lives?

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Answer:  Anger.  Hmmmm.  Well I am NOT angry at God (since 
         I don't believe God gave Kyle cancer.  Or did this.
         As we've explained before, we believe we live in a 
         world where bad things (and good things) JUST HAPPEN.
         We don't believe in a God that orchestrates everything
         in our lives.  (Which everyone else may, or may not,
         agree with...or disagree with.  That's not the point).

         I think that anger is a step in the grieving process.
         From "counselling" sessions, to personal experience with
         death and grieving, and books, and life, I know it is
         a feeling that comes and goes in this whole thing.
     
         Weaves its way in and out through the days, and 
         weeks, and months, and years.

         I am not angry every day.  I am angry some days.

       
         I am mostly angry that THIS is happening--not at
         anyone or anything in particular.  

         Who would I be angry at anyway?

         (Does that make sense?)

         I am MORE angry about the injustices of it all.
         44 years old and cancer?
         4 kids finishing life, and growing up, without their
         Dad?  I am 'cancer can SUCK IT!' kinda mad about that!

         Hopefully as I work through the process, and time,
         I will work through all those feelings as well.

         There are lots of moments that are coming down
         our road to meet us.

         I will face them, all those ugly awful feelings.
         And I will process them so that I can move
         THROUGH the grief instead of having it destroy me.  

         That's my long answer.  (What's new?) :)

Are you consumed with cancer?  What about normalcy?

         Yes.  The cancer is ALWAYS always there.  It never
         goes away for us (as I've stated before).  It does
         for everyone else (and this is AS IT SHOULD BE!).
         But that sneaky little guy is always always hanging
         around our house in the backround.

         We have NOT stopped living.  We DO have a "new normal".
         We DO still laugh and have fun and make jokes and do
         things.  We still LIVE LIFE.  We are not always crying
         and sad and weeping and unhappy.  Not by a long shot.

         But the cancer (for us) is always there.

Kyle's feelings about missing milestones.

         This one weighs very heavily on all of us.  I think
         sometimes we can't think about it too much or we would
         collapse under the weight of missed things.

         This, for me, is the very most heart breaking aspect
         of all about this whole entire cancer thing.

         It is heavy.  So maybe this is the one thing we avoid
         touching on too much.  Kind of like a hot stove...if
         you dwell on it too much, you will get burned.

         Sadly this one will be around, for well, always.
         Every wedding.  Graduations.  Grandchildren.  Holidays.
         I hope that there is still some sweet along with the
         bitter (of the 'bittersweet') that helps us get through
         those occasions. 

         Honestly?  These are the things, that if we consumed
         our time thinking about them, we would be LITERALLY
         crushed under the weight of agony and grief.

         We touch them.  But quickly and not for long and not
         often.

         And when we do?  This is what Kyle always says...

         "I'm not dead yet!"  

         Amen to that one Kyle!  Amen to that one!

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Q;In your spiritual community, are you finding the "realness" that you need? I know from experience that it can be a challenge.


                     Great question, honestly.  And I need to be careful how
         I answer this so as not to offend anyone (if they are
         reading.)

         First of all our community (church) has been really 
         really great meeting our "physical" needs.  (They helped
         us get a new roof for heavens sake).  They have 
         dropped off countless treats, cards, and meals. 
         Seriously, COUNTLESS.  So in EVERY WAY, they have met
         our basic human needs to eat, and survive, and be fed.

         In every single way, meeting our physical needs, they
         have done that WITHOUT FAIL and in the best (!!) most
         wonderful way.  In every single way.  And I do not
         want to sound ungrateful when I say what I say next.
         Because we are grateful.  We will never find a way to
         "repay" the good that has been done to us if we live
         1000 lifetimes and do nothing but repay this goodness.

         This kind of support is 100% important, needed AND
         valued.  We could NOT survive without it. (not not)
         However, it is not ALL we need to survive this
         thing though.

         That said (of course you knew that was coming)--I think
         that the "realness" (being there, saying the 'right
         thing', emotionally supporting us) is very very very
         hard.  People just do NOT know how to do this.

         Especially in THIS situation.

         There have been a few people....
         (who have walked this path before
         that 'get it')--they have been the angels and the rocks          in our life!

         There are many people that just do not know how,
         or what to do in this situation.  Good grief it's a 
         hard one. (What do we say?  What can we say?  What?)

         'Realness' in this situation is beyond hard.

         First of all...WHAT can you say to make it better?
         NOTHING.

         Second of all...half of the 'trite' things you say make
         it worse, so why bother?

         Third...boy oh boy is it hard to talk to someone (us)
         about the realities of death and dying and terminal
         illness.  It's uncomfortable.  It's hard.  It's ugly.

         So it's easier to say nothing at all, right?  right!

         So, in that respect (in EVERY part of our lives) we have
         found it hard for MOST people to be 'real'.  (Not just
         religious community, but family and friends as well.
         The people who are NOT afraid to ask and talk?  
         Real gems!)

         It's not a bad thing.  It just is a 'thing'.  Period.

         Maybe our experience can help someone else the next 
         time they are faced with this...maybe they can learn
         what to do and say.  If nothing else...that is a good
         thing!

         I learned in my life, through my hard experiences 
         (previous to this), that the BEST thing you can do is
         simply say 'I love you', 'I care', 'I'm sorry', ask
         what you can do...and then do something.  Nothing
         will fix it.

         But knowing you are loved and being thought about...?
         It goes a long way.

         But again, circling back to the beginning...it is 
         hard, hard, hard and awkward and hard and hard some 
         more.  So to NO ONE's fault, at all, I think MOST
         people are very awkward at 'being real'.

         
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Q:  will the cancer shrink and so he will be in remission?

Answer:  Yes the cancer WILL shrink.  It has shrunk (first chemo round about
              65% shrinkage...the ONLY time shrinkage is good for a man.  ;)  2nd chemo
              round about 25% shrinkage).

              It will never be in remission with this type of cancer.  As Kyle is Stage 4, it will
              only halt the progression of the disease.  It's already in his bloodstream, out of
              the liver (in lungs and lymph nodes) so there is no way to STOP it forever.

              Unfortunately.   Some people respond well to "halting" it (one doctor said they
              see patients get 3-4 years of extra time).  Some people are dead by now with
              this cancer and never even make it to month 5.
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Those are my answers for today.

I wanted to add, that while sleep has seemed to elude me during
these (almost) 5 months for many nights, it gives me time to 
think. 

This morning, my wake up call (insomnia) was at 5 a.m.

As I awoke from (yet another) awful dream about death and dying
and all of this...I lay in bed for two hours thinking.

I have to say that as we started this journey and heard 'time'
in increments of 6-18 months (sometimes more, sometimes less)
my heart broke.

As we reach the almost 5 month mark from diagnosis, I have to say
that I am BEYOND grateful for all the good days Kyle has had.

After about 1 month of chemo, he was less 'sick' (cancer-y) and
more 'Kyle' again.

He works full time still.  He does projects around the house.
We have made memories.  Done fun trips.  Played in mountain lakes.  Watched Ruby swim.  Eaten dinners.  Gone to movies.
Spent time living.  Worked in the yard.  Put things in order.
Laughed with friends.  Loved with family.  Lived.  Cried.  Been. Saw. Done. Existed.

For every one of those moments, I am grateful.

I am grateful that Kyle is full of life and (for the most part)
'health'.  (It's all relative, right?)

I have had people message me, call me, and email me.
People who know someone with this cancer that is not doing 
NEARLY this well.

Each of them says 'Oh enjoy these moments!'  'Please enjoy them'.

I just want you to know.

We are.

I know this blog (this cancer blog) is heavy on cancer at times.

As is our life.  Everyday.

But PLEASE KNOW that we are busy living and seizing moments
and being and loving.

Please know that.

It isn't perfect and some days we stumble and fall and cry.

But we ARE living.  We are not siting down and quitting.  
Nor will we.

And this is what I've got for today~

Question and Answers: Part 4

Q; What does the 'port' look like? (I don't really want to know, but then I kind of do. I'd probably pass out if I saw it.)
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Answer:  Here is what a port looks like in pictures.  It's really not as bad as you think.
              (probably).  It's about the size of a quarter and is surgically implanted in
              the chest UNDER the skin.  For blood draws or chemo, a needle is inserted
              into the port and left there during the course of treatment.  After chemo
              has finished for the week a shot of heparin is injected to (hopefully) keep
              blood clots from forming.  (A side worry with a port).

     This is the port before being put inside a body (None of these pics are Kyle, just random
     ones I pulled off of the internet).  The port itself is the "quarter size thing" and it also have
12-14" of tubing that go into Kyle's vein and end right near his heart.  Yup, that's where the 
chemo drips now each week.  Amazing isn't it?

 This is where it goes inside the body....

 This is what is looks like under the skin.  Kind of like a (very) large mosquito bite...you get the idea.? (This is a real port picture on someone else)

This is what it looks like with IV lines hanging "out of it"--although for chemo there is just

ONE line (couldn't find a "one line" picture..but hopefully you get the idea).

Hopefully that answers your port questions and hopefully no one passed out.

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Q:  Are you now tempted to try different things; smoke pot, eat some magic mushrooms, or just smoke like a really fat cigar?

Answer:  LOL...this makes me laugh.  
              I (Dorien) keep threatening to do SOMETHING, almost daily. Sigh.               
              Not that I will.  (hopefully).  But cancer, and the stresses it brings, somedays
              are OVERWHELMING.   O.V.E.R.W.H.E.L.M.I.N.G.

              If you (any of you) literally walked a day in EITHER of our shoes, from the
              inside?  You would "get it"....you wouldn't even blame us if we DID
              do something crazy.  We're not planning on it, but you would understand
              why, if you were in my flip flops and Kyle's tennis shoes,you would want to.  
              I'm just sayin'...
         
              So, if at any point during this, I fall off the deep end?  Please please
              don't hold it against me.  Again, NOT planning on it, but I just don't 
              know how much *I* can do before I break.

              People always say that (dumb stupid) thing "God doesn't give you more
              than you can handle."  To which I call B.S.  Sometimes life (not God)--
              DOES give us more than we can handle.  This one?  It's FREAKING hard.

              Here's what I will promise:  To make NO promises. :)

              Some times it feels like it would be nice to escape reality in a mind altering
              way.  But at this point in our journey, the answer is "NO".

              I do have a few stories from friends that HAVE used pot to deal with end
              stage cancer pain.  They share it was the ONLY way to make it through,
              and bear the pain, and find a way to eat.  (This would be the patient, not
              the caregiver!) ;)

              For now?  We are not tempted.  I'm sticking with Dt Dr Pepper (which really
              only ADDS to the my "edge" and doesn't take anything off. :(

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Q: How long do the Dr's estimate that Kyle had cancer before he was             diagnosed?
              

Answer:  Our first opinion Dr said he guesses Kyle had cancer about 1 1/2 yrs growing
              inside him.

              Our 2nd opinion Dr said he guesses about 2 years.

              Liver cancer (along the lines of pancreatic and stomach--all the "gut" cancers)
              are sometimes labeled the "silent killers" of cancer.

              Because for them, these types of cancer, they usually present NO symptoms
              until they are Stage 3 or Stage 4 cancers. 

              So when they become incurable is when they present with symptoms sadly.

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Q: Did any doctors screw up in this process? 8 out of 10 interactions with a medical professional have some kind of 'error' associated with it. Whether it is a misdiagnosis or a wrongly coded test or diagnoses code...it's SHOCKING how often they mess up.

Answer:
SHOCKINGLY, it seems like there have been no BIG mistakes (screw ups) made along he way here with diagnosis.  All the scans and tests and reports we've seen say "Cholangiocarcinoma".  And seem to be pretty much in line with what we've been told.

I'm sure there are mistakes along the way.

As you may or may not know, Kyle is the Clinic Administrator for a Doctor Clinic.
(Family Practice)---so his first hand knowledge of the world of all things medical is
pretty good.  He knows more than I do sometimes.

I just keep looking at bills (mostly in SHOCK) at the cost of treatment.  Thank goodness
for insurance.  It seems INSANE to me that the hospital can bill the insurance for $7800
for each chemo treatment.  It seems insane that people WITHOUT insurance have to
choose.  There are SO MANY things about Healthcare in general that seem INSANE to
me.  (Oh, I have an opinion when it comes to healthcare in our country--I don't have
any good answers, but I have LOTS of opinions.)

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**Actually I have to elaborate on this--in RE-thinking the whole process, there was
a lot of "guessing" at the beginning re: other diagnosis/wrong diagnosis (nobody even going down the "cancer path")  I will do another blog post*******

And NOT to fault the medical community, I DO think a LOT of things they
do are simply a... "best educated guess"--sometimes I think that in the process there ARE
screaming "red flags" that are sometimes missed, or brushed over. (Because WHO
jumps right to terminal cancer, right? ....when making a diagnosis).

I will add this to my questions to answer. :)
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 Q: So once the port was in, do they just pump the medicine in?


Answer:  They simply put a needle in the port, hook that to an IV and then run meds
              into that.   The port also is accessed for blood draws and labs.



Those are the answers I've got for today!

Round 13 on Friday at the Huntsman went just fine.

Kyle had some great visitors who helped the day go by quickly.

Our AWESOME wonderful P.A. Shelley told us she was leaving for a new job--we are
about heartbroken over this news.  It's amazing how "attached" you get to your Docs,
and nurses and PA's in this process!  :(

Shelley was amazing and we loved her straight forward attitude and no nonsense
approach.  She was all that with just the right amount of caring and concern mixed in.

We will REALLY miss seeing her each week, and wish her the best with her new job.

Kyle and I were pretty sad to hear the news.

Anyway, I guess life goes on, right?

That's what we've got for today....a few more answers to a few more questions!

Answers. Post 3

Questions.  Part Three. 3.

(Sorry missed the last in the series that was asked 
yesterday)

 6) Kyle- do you ever dare to hope that you can beat the odds? What keeps you so positive? Where do you draw your strength from? Do your guy friends do a good job of just hanging out with you doing typical guy stuff or have your friends jumped ship not knowing how to "be" around you?

*Have people drawn closer to the two of you since getting Kyle's diagnosis? Have any of them pulled away instead?

*What were your first thoughts/emotions when the two of you were told about the cancer? 
-How has this 'journey' (fighting the cancer and being a support) changed your perspective on life? 
-What would you tell someone who just found out they are in the same situation as your family? 
-Besides support, love, comfort and prayers etc., what more do you need from any and all 
of us?

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Answers


6.  With Cholangiocarcinoma there seem to be no odds to beat.

    Now I know people get down and say we're being negative
    when we say that, but those are the facts with this cancer.
    Longest "survivor" out there (that we've found) was a 
    Stage 1 or 2 that had a COMPLETE liver transplant.  The
    cancer had NOT spread anywhere else.  She's 10 yrs. down
    the road and the cancer STILL came back, it's everywhere.
    This cancer doesn't seem to EVER go away quietly.

    Stage 4, now that's some bad stuff.  

    It's "out of the house" as I explained in my Cancer 101
    post way back when.  It's already in Kyle's blood 
    floating around, looking for new places to grow.  It has
    already landed in his lungs.  It is already in his lymph 
    nodes.  

    Does that mean he will die tomorrow?  NO! (hopefully 
    not which could involve being hit by a truck or some
    other thing).

    But our very long answer is NO.  We don't think there is
    an alternate ending to this scenario.  But that also
    doesn't mean we aren't going to fight with EVERY ounce
    of energy and gumption to make his life as long as is
    possibly possible right now.

    If you don't know me in person, I am a stubborn pain in 
    the arse.  There is NO WAY I will go down without a fight
    for my husbands life.  Nor will he.  
   
   I think sometimes people CONFUSE     
   "accepting reality" with "giving up".
   They are NOT the same thing.  Not the
   same thing at all.
    
    NO ONE in this house is giving up without a fight like 
    you've never seen.

    NO ONE!  (Take THAT Cholangiocarcinoma).  

    Kyle is just a positive person.  He is hopeful and
    believes in the power of positive thinking (not to cure
    him, but to help him through).

    We draw our strength (right now) mostly from each other,
    our family, friends, and even complete strangers.

    We believe also that the power of prayers/good thoughts/
    energy (however you want to term it)--is helping us through
    as well.  We pray not for a miracle, or a cure...we pray
    for strength and courage to make it through.

    If either of those, a miracle or a cure came, would we
    take it?  Um yup!  That goes without saying.  That simply
    goes without saying.

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*People pulling away and people staying...I touched on this
a little yesterday.

Yes, people have done both.

People that we thought would be around non stop, have not been.

People that we never would have guessed would be around,
have been.

And some people have been exactly how we thought they would be.

Imagine that?!  

This is common in so many things I've read and heard.

About terminal cancer.

Facing mortality is hard.  Some people cannot do it, it 
is just too hard.

WE don't have a choice, but people that know us DO.

Have a choice. 

Here's the thing.

We don't fault ANYONE for how they act and react.

We get how hard this is.  

(Believe me, we GET IT! If we could trade THIS "hard thing" for just about ANYTHING else? We would.  Possibly ANYTHING else.

Kyle and I always laugh (manically and hysterically) when people
throw out the old "Well, if you knew what someone else's trials
were, you wouldn't trade them for your own!"

Snort! HA HA HA HA! Choke! giggle...all in a "ya, that's NOT
funny kind of way!"  This one folks??? HANDS DOWN we would trade it with someone else for something else.  HANDS DOWN and blindfolded!)

Life is also busy.  People are busy. 

We bear no ill will, contrary to sometimes differing opinions,
if you are not here, cannot be here, and don't want to be here.

We just always say that for those who love Kyle and those
who care--we don't want you to have any regrets that you 
didn't make time, or a memory.

That is the ONLY reason for us...in a weird and odd and 
caring way FOR YOU. We don't want YOU to miss out... that is
the truth in our heart of hearts.  

Time ticks, it keeps ticking and someday TIME will be gone.

Kyle always says he feels strongly that different people
will step in when they are needed.

So far this has been the case 100%. 

Has it always been who WE thought it would be?

Nope.

But someone has ALWAYS been there when we've needed them.

Thank you to ALL of those people. 

You are going directly to heaven.  

You don't have to stop at GO.  Or collect blessings or
repent of your sins.

Free Passes for all!

No seriously.  I've worked it out with God.  We're tight,
me and the Big Guy.

ANYONE who is kind to ANYONE who has cancer in this life--
they're going straight to the right place.  Just count on it.


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First thoughts when we found out Kyle's diagnosis?

Devastation.  Heartache.  Sadness.  Shock.  Tears.
Weeping.  Sad.  Sad.  Sad.  Shock. Sad. Sad. Sad....

Does that cover it? LOL

Has this changed our perspective on life?

Yes!  A thousand times yes!

How could it not.

It SHARPLY puts into focus what really really really really
matters.

It's not money, or fame, or power, or wealth or success.

It's family. And love. And time.  And memories.  And making them.

Period. 

That is all. (For us)

Those are the basic things, the most important things in life.

The things we ALL know, and loose focus on everyday because 
life gets in the way.

Cancer, of the terminal variety, clears the air of ALL
things that don't really matter.

Boy oh boy, there are A LOT of things that don't matter in 
this life that we spend WAY too much time worrying about.

What would we tell someone else with this diagnosis?

Do it YOUR way!

Don't let anyone tell you what the "right way" to do this is.

Each person facing this, has an individual journey.

There is NO right way or wrong way.

Be patient.

Feel.  Talk.  Love.  Talk some more.

Work through all the feelings.

Surround yourself by people who love you and support you
and LET YOU express your feelings.

Hold hands.  Smell the flowers.  Live each day.  Cry if you 
need to.  (Who cares, right?)  Get up when you think you
can't.  Stay in bed and cry for a day if you need to.

Cling to the things that matter.  Go easy on yourself.
Give yourself a break.  Smile.  Laugh.  Love.  Get off work
early and go to a movie.  Lay on the couch with your kids
and watch TV in the middle of a Saturday when you should be cleaning.  The dirty house can wait.  Eat ice cream.
Enjoy a sunset.  Pet your dog.  Tell bad jokes about Moodles.

It's ALL about the little stuff now.

What do we need from people besides prayers, love comfort, etc?

Nothing, honestly.  THAT IS WHAT WE NEED!!  

Love.

Support.

Love.

Support.

Mostly JUST LOVE.

And not in a benign "they already probably know" kind of way.

Like I mentioned yesterday...tell us.

Tell Kyle.  Tell me.  Tell the kids.

We love you.

We're thinking about you.

Nothing big.

Doesn't have to be fancy or expensive.  
(remember the text thing?)

Texts are brilliant!

Just love us ....it gives us (or helps anyway) 
the strength to keep moving forward. It helps us
carry this heavy load.

Those are my answers for today!!!