Friday, December 27, 2013

Change in plans...

If this disease has taught me anything (beyond the fact that I'm surrounded by amazing friends and family) it is to expect the unexpected. And then run with it.

Every time I go in for chemo they take blood and run a battery of tests. They also take urine and run a bunch of tests. As you'll note from my last chemo update, we found that my liver enzymes were high. High enough that my treatment was delayed until they got a doctor to sign off on it. This time, every important number that has to do with my liver has gone up again. As my Dr. said, "Everything is going in the wrong direction."  Right now we don't know if this is due to the particular chemo track or if my cancer just isn't responding to treatment and progressing just to spite me. 

Of particular concern, my bilirubin levels have climbed dangerously high and fast. This is a measure of liver function and if left unchecked can lead to permanent liver damage and liver failure.  That's bad news in my case because liver transplants are a big no-no for terminal cancer patients.  So it would be an end-of-the-line kind of thing. 

The other cause for thought is a number called CEA.  This is the cancer marker that is a suggestive, but not diagnostic measurement.  This means that they look at it but it isn't accurate enough across many individuals to be really reliable.  Technically, as the number climbs it indicates that your cancer is progressing.   Mine was 3.8 at diagnosis.  5.8 at my first chemo.  13.8 at my second chemo.  53.8 was my number today.  Again, I want to be clear (as much for myself as for anyone else reading this) that this is not a number that they use to say things are going good or bad, it just makes them pay a little more attention.  There have been many people whose CEA never elevated who never made it and there have been many people with CEA in the 200-400 range who have come through unscathed. 

So the big news of the day is that we've chosen to change chemo treatments.  And we started today.  The change is in just one drug in the cocktail, but it's the biggie.  The Oxaliplatin has been replaced on the mound by Irinotecan.  This has been lovingly nicknamed by the nurses as I-Run-To-The-Can.  Yup, the most common side effect is severe diarrhea.  To this I say...Bring It On!  That's why I have the Swash.  As far as other side effects, there are too many to list and it's hit or miss as to whether any one individual will actually experience them.  So I'll stick to what I've experienced already.  
  • Uncontrollable sweating - I've gone through a full change of clothes already.  Thankfully, it seems to have abated a bit, but there is no way to know if or when it will come back.  
  • Runny nose - Right, like this one should be mentioned at all...but it is a steady and unrelenting trickle.  
  • Confusion - I have had bouts of confusion so bad today that I wasn't aware of what my wife was doing when she was trying to cover me up with blankets because I was freezing.  My response to her action?  "I just don't feel right about it..."  A blanket.  Also, there was a full, freshly opened box of tissue on my side table, but in a different spot than it usually was.  (Note, a side table isn't a huge area where one misses things due to size.)  Since I didn't see my tissue box I opened a new one and put it right next to the existing one.  Didn't realize what I had done for several minutes.  
Now...It's not all dark clouds and thunder claps.  There are some pretty wicked side effects from the Oxaliplatin that I get to say goodby to.  The biggest of which is the neuropathy.  That alone makes me smile ear to ear.  The neuropathy was an absolutely demoralizing and limiting impact on my life.  There were so many tings that I couldn't do while I was experiencing neuropathy that would have helped in my hydration and nutrition regimens.  Now I can do those things and (fingers crossed) make life easier with being able to ingest food and liquid.  
We still have a CT scheduled for Jan 8th and will go over those results on the 10th with my doctor right before my 4th treatment.  That will be the big update day.  We will have actual, real results to share.

And in other news...I got a cane.  It's a nice collapsible model in metallic grey and occasionally helps me up and down the stairs.  I haven't had the need to take it out in public yet, but at this point I have no qualms about doing so.  It keeps me from falling down and I think that's pretty darn cool.  

Swallow your pride today...or tomorrow...or anytime you feel that pride is preventing you from doing something good for yourself.  



  1. You are so amazing and my family and I will continue to pray. Hang in there Jake and McManaman family. We've got your back.

  2. Man I had no idea. Not sure if you posted on facebook or not but I don't get on there much. We will certainly keep you in our prayers. We have had numerous bouts with cancer in my family. I can empathize with you. God bless buddy.

  3. Hang in there Jake! We are cheering on your end of the field. And praying, lots and lots.

  4. We love you Jake. I was watching Jake and the Neverland pirates with my son today and they said pirates are Brave. I thought of you Jake, you are a true Neverland pirate. Don't let captain hook win. RRRRR!

  5. You are awesome Jake and your positive attitude is inspiring. Love to you and your beautiful girls. My family and I are thinking of you.