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!