Yondelis: The Chemo that Keeps On Giving

Yes, I realize it's been nearly 2 weeks since I posted my last update.  My only excuse is Yondelis.  And it's a good excuse too!  Yup, it pretty much kicked my ass (figuratively for sure, literally I hope).  Not that I ever thought this was going to be easy, but clearly Yondelis is not the "kinder, gentler chemo" I had hoped for.

I was doing just fine up through mid-afternoon Wednesday, 02/13, when it started to hit me.  The initial symptom was extreme fatigue.  I had to make myself lie down for about 2 hours that afternoon and ended up going to bed early that evening.

The following morning (Valentine's Day), I was hit by the full force of Yondelis.  Symptoms included:

• Debilitating nausea (note: usually this has the distinct advantage of causing you to lose weight.  Not with Yondelis!  I gained 10 lbs of fluid weight in my gut!)
• Extreme fatigue
• Body aches
• Weakness
• Shortness of breath
• Total and complete inability to comprehend technical problems (i.e., chemo brain)
• Trouble speaking clearly (also chemo brain)
• Headaches
• Bloated feeling (even though I was eating/drinking very little)
• Don't feel like eating/drinking (because of being so bloated)
• Ins and Outs not matching (because I was retaining fluid)
• Generally miserable

Thankfully I had a follow-up appointment scheduled that morning at my Oncologist's office (Holly had to drive).  They drew several blood samples from my port and hooked me up for fluids.  Of all the counts, the one that really stood out was my Liver Enzymes.  The normal range for this is below 50; my number came in at a whopping 2252 (over 40x out of range)!  The doctor also indicated that elevated liver enzymes is known to contribute towards nausea, fatigue, and loss of appetite.

I was told though that this is just something that Yondelis does and that, in time, my Liver Enzymes should return to normal.  Based on my latest labs, the number is still around 778 (from 02/20), but another lab will be taken on Monday (02/25).  At this rate, I seriously doubt that it will be < 50 by the time Round #2 is scheduled to begin (on 03/04).

My life these past 10 days has consisted of 6 long trips to the Oncologist's office and basically feeling crappy.  It feels kind of like having the flu, where you feel miserable, sometimes wish you were dead (so the misery will stop), but know in the back of your mind that this is (or at least should be) temporary.  Combine that with the rainy, dreary, and cold weather we've had for about the same amount of time and you'll find yourself dreaming of being healthy and living in Florida!

Things are not all bad though:

• I found the right combination of meds that kept the nausea under control.
• No problem with neutropenia (low neutrophil count), a problem that plagued me 10 1/2 years ago.
• Thus far, my kidneys do not seem to be impacted by the treatment.  Fingers crossed!
• The fluid weight gain has reverted back to net-zero lbs gained this round.
• We will save even more money on our cruise now since I am medically banned from drinking any alcoholic beverages during my Yondelis treatment (due to my elevated Liver Enzymes).

I think the thing that's been most baffling to me is that I just don't know when these symptoms will end.  For example, when I woke up Friday morning (02/22) I felt almost like I had been reborn.  I drove myself to my Oncology appointment that day with a smile and a spring in my step.  But by the time I got home (mid-afternoon), I was completely exhausted and ready for a nap.  Come the next morning (02/23), I felt like crap again, with virtually zero energy.  The best I could do was to move from couch to couch all day.

Contrast this with the AIM regimen which, despite the extreme lows, I could clearly tell when my body hit the reset button.  And once I was on the way back up, each new day was consistently better than the last.  With Yondelis, I still haven't figured it out.  Maybe it's because my Liver Enzymes are still so elevated, I just don't know.  All I can do is take things one day at a time.

That brings us to today.  This morning felt like Friday morning.  I felt stronger and better and was motivated by the (rare) orange ball in the sky to get out and get moving.  Holly and I walked a slow 3 miles at our favorite park today, which is quite an accomplishment for me right now.

In closing, I wish to thank everyone for their name submissions for my chemo bag.  I promise to review those in the coming week and declare a winner.  I also wish to thank friends and neighbors for all of the cards, gifts, meals, songs, encouraging words, etc.  The graciousness shown our family will not be forgotten!

Round #1, Day #2: Unpack Day

Today I go in back to get my "man purse" detached.  Of course, there's no way I'm going to let that name stick; I need your help with a hipper, more trendy name for this "pack".  Here's a few pictures so we all know what I'm talking about:

Close Up showing pump window

The "Secret Sauce" on the inside

What do you call this 'pack'?

So far in the running I've heard:

• Manny Pack
• Man Bag
• Satchel
• Rucksack

None are very clever.  Whatever you want to call it, "purse" anywhere in the name is not acceptable.  And calling it a "backpack" is a real misnomer too as it has a single strap.

They made me watch a 9 minute "safety video" about the pump, which included helpful information such as "Do not take a bath with the pump".  I guess there's a lot of stupid out there, and if you don't explicitly call it out, someone's bound to try it.

You also don't want to cut or detach the line from your port to the pump.  The nurse mentioned that some guy recently decided to trim his hedges while hooked up and inadvertently cut his line in the process.  Who would have thought such a thing were even possible?!?  I'm sticking with my original statement!

I was actually getting a little concerned about doing something stupid myself while I was sleeping.  At least once last night the port area on my chest was feeling scratchy and I was ready to scratch hard and rip that thing out without even thinking.  Luckily I woke up just enough to come to my senses before I did anything I was sure to regret.

But even if that were to happen, have been equipped with an Emergency Spill Kit that I have been assured is capable of handling even the worst toxic spills:

Chemotherapy Emergency Spill Kit

Yes, it's a paper towel, a pair of vinyl gloves, and a zip-lock bag.  The nurse was actually shocked that it was so minimal.  Apparently it used to be much better (2 paper towels?), but with cost-cutting and all, this is what we have today.  Progress indeed . . . kind of along the lines of the Duck and Cover drills from the 1950s, which promised protection, but ultimately only provided the illusion of being safe!  Keep in mind that these chemo nurses wear a hazmat-approved full gown and face mask with working with stuff.  So best to avoid any accidents at home!

As I'm writing this post, it is Tuesday morning and I'm just about to head to the Dr's office.  Overall, I'm feeling much better than I was 10 1/2 years ago going through the AIM regimen.  It's really too early though to make any judgement quite yet, but I'm cautiously optimistic.  I will say that I think I'm already feeling a little "chemo brain" as this post has been considerably more difficult to write than others.  I guess this is to be expected.

Part of what I get when I go in today is a 2-hour hydration IV plus more anti-nausea meds.

I've been told that the "danger zone" with Yondelis is typically between day 7 - 10.  Today is Day #2 in my cycle, so still a good ways to go before I know if Yondelis and I can become good friends.

Round #1 Starts Now!

By the time you read this, I should already be hooked up and zoned out with Round #1 of Yondelis!

Yup, just another reason to hate Mondays . . . at least every third Monday starting from today, Monday, February 11, 2019!  Having gone through chemotherapy before,  I know just how much it can suck the very life out of you.  I had sworn I would never do this again, yet here I am, I've signed up for more.  It's really quite surprising what people are willing to sacrifice for the promise of better health and a longer life!

In fairness though to Yondelis, which has been marketed as the "kinder, gentler chemo", perhaps the better way for me to look at this is: "the enemy of my enemy is my friend".  I've been told that Yondelis has an absolute hatred for Myxoid Liposarcoma, so my focus right now should be on this common ground, where we can both agree.  It's really not fair for me to be prejudging her, just because of some bad breakup I had with another chemo years ago.  I need to hear her out and give her a chance.

But for this relationship to work, there are certain rules/conditions that must be followed:

1. I've got to eat!  No more starvation diets just to try to get along!  Please don't make me feel bad if I do a little light snacking every now and again!
2. You can't have all of my white blood cells!  Yes, I'm sure they are quite tasty mixed in with the Myxoid, but I'm just not ready for that level of commitment.  
3. Leave my kidneys alone, period!  The last chemo I had took advantage of me while was I doped up and sleeping.  Never again!

If these boundaries can be respected, I think we'll get along just fine . . . and we'll each get what we want!  Kill those damned Myxoid Liposarcoma invaders!

Countdown to Chemo!

I know this post is long, and long overdue, but this sort of publishing slippage is exactly what happens when work deadlines, medical appointments, personal deadlines, and the Super Bowl all collide!  You frantically go from one thing to the next, hoping that you have not overlooked some significant detail.  Thank God I made myself relax last night so that I could watch what turned out to be one of the most boring Super Bowls in recent memory.  Well, at least the Game of Thrones commercial was cool!  No spoilers, but it's always shocking the characters they decide to kill off!

Rewind to Last Wednesday (1/30/2019), Meet the Oncologist

I had my first Medical Oncology appointment this past Wednesday afternoon with Dr. Kamal N. Ummed of Georgia Cancer Specialists (affiliated with Northside Hospital Cancer Institute), in Alpharetta. 

Dr. Ummed has over 15 years of experience as a medical oncologist and has recently taken over treating all sarcoma patients (previously under the care of Dr. Gina D'Amato, who has since moved on to a hospital in Miami).  In addition to having an amazing haircut, Dr. Ummed stuck me as extremely caring, compassionate, meticulous, and thorough.  I kid you not, he spent over an hour with me discussing my history with Liposarcoma, my current situation, and the proposed treatment plan.  I made it clear to Dr. Ummed that I had a very specific schedule in mind with my treatment plan and he had no problems whatsoever getting me set up on my preferred dates.

Another really great thing about seeing Dr. Ummed is that he stays in close contact with Dr. Gina D'Amato (my Oncologist from 10 years ago).  Much of the direction and key decision making will come with her input.  What more could one possibly ask for?  I get to be treated by an amazingly cool and experienced medical oncologist locally who works with a team that includes a world-class sarcoma specialist.  Safe to say, I'm in good hands!

Here's a Summary of the Treatment Plan

• Prior to starting chemotherapy, I must first complete the following prerequisites:
• Baseline Echocardiogram (for monitoring heart health during treatment).
• Baseline pelvic MRI (if the one from 01/15/2019 is not considered "current" enough).
• Port placement surgery.  This port will be my main hookup for the chemo.
• All of these will be handled on Wednesday, February 6, 2019.
• The plan calls for 6 rounds of high-dose Yondelis (pronounced yon-DEH-lis), given as a 24-hour backpack infusion.
• Round #1 will start on Monday, February 11, 2019, just one week from today!
• Each round (or cycle) is 3 weeks in total duration.
• Similar to my treatment 10 years ago, I would expect the first 2 weeks of each cycle to be fairly rough, with recovery coming the 3rd week.  But more on that later.
• After 2 rounds, another MRI will be done to verify that the chemo is working as expected.  If shrinkage is not seen after 2 rounds, alternative treatments will have to be evaluated.
• Other checkpoints will be after rounds 4 and 6.

This schedule put me well into June before I move on to the "next phase", which quite honestly is undecided at this time.  Surgery still scares me to death and does not guarantee a cancer-free future.  My preference at the moment is to seek Proton Therapy as the next step and forgo the surgery altogether.  In reality though, I think my best option come June is to seek out an expert 2nd opinion on the matter.  Certainly somebody at MD Anderson (in Houston, Texas), the Mayo Clinic (in Jacksonville, Florida), or even Sloan Kettering (in NYC) would have something definitive to say.

Outpouring of Support

Both Holly and I have been absolutely blown away with the outpouring of support we've received in these past few weeks.  We've received a number of calls, letters, emails, and gifts from longtime friends, acquaintances, current and former colleagues, neighbors, etc.  It's an entire community of people, spread all across the country and even along our very own cul-de-sac, that are actively rallying behind us.  The enthusiasm is contagious and emboldens my resolve to face what is ahead.  It's so good to know that I am not doing this alone!

Also with me every step of the way are the following "battle buddies":

Click to Enlarge

The Care Bear Story

As you may recall, it was nearly 10 years ago that my wife Holly went through Breast Cancer treatment.  Yes, just as I was finishing up my sarcoma treatment, we got the news about her diagnosis.  That summer of 2009 during her treatment, we sent our boys to a day camp at the nearby Cannon United Methodist church.  It turns out that they have an active cancer support group and when they found out about Holly's condition, the group gave her a pink Care Bear.  This was no off-the-shelve Care Bear, it was custom made.  At the time though, Holly had no idea who actually made these.

Fast-forward another 9 years, to the summer of 2018, and Holly finds herself at a new job with a coworker named Jan.  After being there for a little while, they discovered that they had something in common: Jan was the person who made the pink Care Bear all those years prior.  What an incredible "coincidence"!  After hearing about my diagnosis, Jan put together this super cool part Florida Gator, part Tennessee Volunteer Care Bear.  To me this symbolizes not only that that have we both been through this before, but that we are inseparably sewn together in this journey and that the role of caregiver is every bit as significant (and burdensome) as the role of patient.  What amazing handiwork to pull this off.  Thank you Jan!

Dammit Doll

This thoughtful and funny gift is from one of Holly's cousin Lisa in Colorado.  Not sure that you can read the inscription, but it says:

Whenever things don't go so well, and you want to hit the wall and yell, here's a little Dammit Doll, that you can't do without.  Just grasp it firmly by the legs and find a place to slam it.  And as you whack the stuffing out yell "Dammit! Dammit! Dammit!"

Given that this package is from the cannabis-friendly state of Colorado, I suspect there's more than just "stuffing" inside.  Oh wait, I just checked, and it's just stuffing.  Dammit! Dammit! Dammit!  :)

"Bucket List" Trip Planned

In order to make it through difficult times, I find that it's best to have distractions and something to look forward to.  Work keeps me busy, which I'm convinced is far better than being idle and letting your mind wonder to dangerous "what if . . ." questions.  As to something to look forward to, how about a 7-Night Mediterranean Cruise on the Disney Magic with the family!

Click to Enlarge

I realize that this may sound like some high-priced, extravagant trip, but I assure you it is being done on a budget.  By cancelling (with full refund) a planned anniversary cruise for this October and putting all of our Disney Vacation Club points towards this trip, it is currently costing us $0.00.  The only real cost will be the round-trip airfare to Barcelona (which is currently "sky high") and any miscellaneous excursions/incidentals.  I'm keeping a close eye now on Google Flights and Priceline.com for deals.

Prior to booking this trip, I looked at the calendar and saw that this cruise perfectly aligned with the "good week" of my 5th round of chemo.  Yes, it would mean that the 6th round would be delayed by a week, but so be it!  This is something that Holly and I always wanted to do and it doubles as a great "senior trip" for our younger boy Kyle, who graduates High School just days before we sail.

The way I justified this expenditure to Holly was as follows:

Before I "sail off into the sunset", I want to "sail, off into the sunset"!

Thankfully she understood my (attempt at) humor and agreed that this was a good thing for the family.

We can't wait!