Wednesday, May 22, 2019

"Cleared" for the Cruise

In general, I've been feeling a lot better starting around last Friday.  Thank you everyone for your well-wishes, prayers, and words of encouragement.  I think those all worked wonders for me!

With our vacation starting tomorrow, you can only imagine how busy Holly and I were over the weekend.  Come Sunday afternoon, I ended up spending over 3 hours outside working on the yard and landscaping.  This was the first of such work since my diagnosis and it was overdue.  I felt strong going into it, but by the time I was done, my arms were very sore, burning in fact, from holding the large bush trimmer for so long.

The doctor has warned me to stay away from "extreme exercise" or spending hours in the gym doing heavy weightlifting as this can lead to elevated Creatine Phosphokinase (CPK), and possibly even Rhabdomyolysis, both conditions that I had back in late March.  Never though would I have thought that simply "trimming the bushes" would have been something equivalent, but apparently I was wrong.

Tuesday Labs

I had my final pre-cruise labs taken yesterday (Tuesday), and all seemed to check out OK, so they "cleared" me for the cruise.  But one of the labs (the CPK) takes a full day to get results.  I got a call mid-morning today from Nicole (the NP) and immediately suspected that something must be off with my CPK, or otherwise she would not have called.  She informed me that my CPK had jumped from 91 last week to a critical 2416 in yesterday's lab.  Holy crap!  My CPK number was less than half of that back in March and they were ready to put me in the hospital.  Keep in mind that the "normal" range for CPK is 24 - 204.  So yes, my numbers are off the chart!

She then asked me to come into the clinic today for more fluids, which is what is necessary in order to drive that number back down.  I refused, citing too many schedule conflicts for today.  I believe I can get the same thing here at home by simply drinking lots of water.

This is nothing to take lightly either.  As I reported back on April 1, high CPK levels can cause the release of potentially toxic muscle cell components into the extracellular fluid and blood stream.  This, in turn, can result in renal/kidney damage and, in extreme cases, renal failure.  But rather than go down that dark road, I'm going to focus on drinking fluids . . . lots of fluids.

Doctor's Orders: Heavy Drinking Required on the Cruise

Rather than revoke my cruise card (yeah, like that's going to happen), the doctor has ordered me to make it my mission to stay extremely well hydrated on the cruise.  I'm pretty sure he was referring to water, but I didn't seek clarification on that point.  Seriously though, I plan to do my best to stay hydrated on the cruise and during our excursions.

"Don't Kick the Bucket" Bucket List Cruise

This cruise is definitely a once-in-a-lifetime sort of thing, though nothing I thought I would get to do until after retirement.  But once your life is threatened, you begin to reevaluate your priorities and time-table for "Bucket List" items.  That's the short version of how we decided to go on this cruise.

I give credit to my younger son, Kyle, for coming up with the "Don't Kick the Bucket" Bucket List Cruise line.  After all I've been through with Yondelis, even the critical CPK count I learned about today, I really want to just enjoy this cruise without overexerting myself in the process.  By the way, he graduates tonight from Brookwood High School.

Back to the cruise, we fly out tomorrow for Barcelona (where, sadly, Friday looks to be a rainy day) and board the Disney Magic Saturday around 12:30.  We should all be back safe and sound Saturday evening, June 1.

More Chemo on Monday, June 3

Assuming I'm still healthy and my blood counts look good, I am scheduled for Round #5 of Yondelis right after I get back.  But I don't even want to think about that right now.  All eyes on having a great vacation and some good family time.

Thursday, May 16, 2019

Round #4 a Bit of a Roller Coaster

So here I am, at Day #11 in Round #4, and I have to admit that things have been a little up and down this past week.  Starting last Friday (and lasting throughout the weekend), I was simply wiped out!  Of sure, you can call this a "baby dose" if you'd like, but I can say for certain that it still feels like I've had chemo.  I did rebound on Monday, but these past 2 days now have been very "low energy" days for me.

With only 7 days before we fly off for the cruise, I hope that this thing turns around . . . and soon!  I certainly can't afford to either get sick or feel bad while on vacation.

Wish me well -- I need all the well-wishing I can get!

Sunday, May 5, 2019

Surprise! Round #4 Starts Tomorrow!

First off, my apologies for not posting an update earlier.  In general, "no news" means things are either going exceedingly hard or smooth as silk.  In this particular case, it means the latter.  Everyone (especially me, the oncologist, and my family) has been positively shocked at just how easy this round has gone for me.  I didn't have a single complication and have been able to work the vast majority of this cycle.  I'm honestly surprised that just a mere 16.667% dosage reduction has made such a difference, but it did.  Also helping (I think) was a single round of Lasix on day #5, when my body was showing signs of fluid weight gain.

Originally Round #3 was intended to be my last round before the cruise (now just 2 1/2 weeks away).  But since "no good deed goes unpunished", the doctor feels strongly that I should get another "mild" round of Yondelis prior to the cruise.  Part of the reasoning (and I agree with him) is that you don't want to give the cancer a chance to rally back during the month of "chemo vacation" resulting from the cruise schedule.  And speaking of schedule, the goal is to dose me with Yondelis every 3 weeks.  Thus far, due to overdosing and other complications with Rounds #1 and #2, those rounds lasted 4 and 5 weeks respectively.  But I'm back on schedule now . . . and will pretty much stay on schedule for Round #5 (post cruise), all because of getting this "surprise" dose tomorrow.

Nervous?  Not too much.  If I can manage to have another round that goes as smoothly as Round #3, I still should have plenty of fun on the cruise.  There's a chance, in fact, that the oncologist may even slightly reduce my dosage (just this one time) in order to ensure there are no pre-cruise complications.  I plan to negotiate a "reasonable" dosage with him tomorrow.

Happy Cinco de Mayo!