Friday, February 21, 2014

Good news, changes in treatment and a new concern

It was long shitty day.

Today was treatment #7, the treatment that almost didn't happen.  It was a day that started at 7:30 and ended at 3pm...and that's just hospital time. 

Delay #1 - They had issues drawing blood from my port.  This may be due to the catheter shifting in the artery and acting like a straw at the bottom of a cup.  Blow into the straw and you're good, try to drink from the straw and it suctions to the bottom of the cup and prevents liquid from coming up.  It could also be fibrous material growing/collecting at the tip of the catheter.  Either way, something will have to be done at my next appointment to fix it.  I've been assured that they won't have to go back in and fiddle with it so surgery won't be necessary.  Which is good because that would put me off chemo for a couple of cycles with the blood thinners. 

Delay #2 - Because of my weight loss my Dr wanted to have me join a clinical trial (more on this later).  We were pretty excited about this and immediately agreed.  There was a lot of hope and good feeling conveyed about my participation.  This would also necessitate that I delayed my chemo treatment for a week.  (I was looking forward to a week off.)  After signing all of the consent forms, it required an EKG.  So we waited for a tech and had the test run.  After I had all of the pads ripped from my hairy appendages, I was told that we would need to repeat it because one of the numbers was slightly high.  30 minutes later I was being hooked up for my second EKG when the trials nurse came in and said that I had been disqualified from participation because I've had blood clots in the last month.  Damn it.  2 hours (and quite a bit of leg and chest hair) gone. 

After that news it was determined that I would have treatment today.  So I did.  My original appointment was at 9:15 and I checked in to the infusion suite at 11.  And it started with a new drug.  Now...new drugs always give me a little bit of heartburn.  You never really know what you're going to get with it.  That point was driven home today when a woman in the suite next to mine had an allergic reaction to one of her drugs and went unconscious.  They had to call in a rapid response team and pump her full of steroids and other drugs to wake her up.  As someone who now puts a variety of chemicals in their body, this is always a lingering thought in the back of my mind.  The new drug replaces my Avastin and is named after an alien planet...the planet Zaltrap.  Yes...I'm filling my veins with something that sounds like a 1980's space character.  We'll see if it has a better result than the Avastin.

Good news - So here's the good news...I'm putting it right in the middle because...well that's just where it fits.  It's nothing to end on (although it should be) and I wanted to bitch about my day first.  So this is what you get.  My tumors haven't progressed much at all.  Certainly not like they did between my diagnosis and second CT where they exploded like a bunch of little party poppers that you get on New Year's Eve.  And to back that up?  My tumor marker, the CEA number that you hear me talk about from time to time, has gone down.  You heard me right...DOWN.  And by more than it went up last time.  This time it's 140.4.  That is a drop of almost 20 points!  Right now, this is the ONLY thing keeping my head above water.  I didn't find out about it until I got home, but it was news that I needed, when I needed it most. 

A new concern - Why did I need good news?  A new C word.  And this one doesn't end with *ancer.  The word is Cachexia .  According to the National Institute of Health, "Cancer cachexia describes a syndrome of progressive weight loss, anorexia, and persistent erosion of host body cell mass in response to a malignant growth."  It's also known as wasting syndrome.  It basically means that my body is slowly eating itself and despite my nutritional efforts to this point, I have been unable to stop it from feasting.  In just under 4 months, I've lost 46 pounds.  If you do the math (which I have many time in the past few weeks) that doesn't give me a lot of time to fix this.  In another 4 months, without any changes, I'll be under 160 pounds.  We're talking middle school weight for me and not at all healthy.  Without sugar coating anything...it would be near the end.  That's the hard part of all of this.  I have terminal cancer.  And now that seems to be the small problem. 

I don't like to end these things on a dark note...and I'm trying to focus on the positive.  The fact that I'm feeling stronger and reacting to my treatments faster and better...I realize that those things should be my beacons in the night.  But this is all just a bit overwhelming at the moment and the issue of mortality is front and center...and for the first time in this journey...measurable.  I can't put into words how difficult it is to share this.  It feels wrong.  It seems like it should be something that I keep to myself and struggle with, without bringing everyone else into it.  But I know that I need the prayers and support and positive energy.  Because my tank of that stuff is really low at the moment. 

Don't lose sight of the truly important things in life.  Hold your loved ones close.  And forgive those who may have wronged you. 

I love you all. 

Jake

4 comments:

  1. Hold on Jake! Praying and hoping and crossing fingers and sending the most positive vibes I can muster your way.

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  2. Jake and Tammy and Miah...is it OK to say I know your depth of anguish? We all face our own mortality someday, but your courage in saying so is an open door for Jesus. I have no platitudes to share, just know that LIFE everlasting is a reality, and that you will not be forever separated. I Thessalonians 4:13-14 and I Corinthians 15:19...onward. The Scripture is to comfort us in the most difficult times. I wish I could just insist that you are going to win this earthly battle, but you WILL WIN forever in Him. I will not stop praying for a miracle either...we follow you closely. LOVE for sure and non-stop!

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  3. You are in my prayers every night and in my thoughts each day. Keep holding to the light and you'll find a way through to the end. The night is always darkest just before the dawn. A friend told me recently that God works his best miracles in the night. Your daylight will come. With love and prayers in mind-GB

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