Please Subscribe to get a daily link to Pat's blog via email

Subscribe!

Your privacy is important to us. We will never spam you and keep your personal data secure.

A cautionary tale: The good, the bad and the ugly from our trip to Orlando (Part One)

Home/About Pat, Inspirational, Side effects, Tips/A cautionary tale: The good, the bad and the ugly from our trip to Orlando (Part One)

A cautionary tale: The good, the bad and the ugly from our trip to Orlando (Part One)

Pattie and I drove over to Orlando this weekend to visit Florida’s Universal Resort for the first time.

Even though we have lived down here for three years, I had never been to any of the area’s large theme parks; not Disney, Universal, SeaWorld or even Busch Gardens, which is closer to our home near Tampa.

I know, I know.  Hard to believe!  But we don’t have kids and we are both a lot more interested in walking along a quiet beach or learning more about the area’s history.  So we loved our recent trip to Savannah, Georgia.   Walking along the river, wondering through historic neighborhoods and reading old tomb stones in the city’s oldest cemetery.

Now I must admit I’m not a big fan of Orlando.  To me, Florida is all about the ocean and the Gulf.  You’re surrounded by water down here.  Why would you want to spend time stuck in the middle of the state?

While researching my 4th book about how and where myeloma patients and caregivers can go to get help with co-pays and medical bills, one of my contacts recommended I get in touch with an organization called Compassion Partners.

Compassion Partners helps cancer patients and their families by providing them with free passes to a number of the large tourist attractions here in Florida.  I will share more about the organization–including contact information–later this week.

After providing Compassion Partners with a letter from one of my doctors confirming my condition, Pattie and I received a pair of free, two day passes to to both of Universal’s incredible parks.

And there’s more.  Along with free admission for both of us–both days–a VIP pass was included that allowed us to be escorted to the front of the line at busy rides and attractions.  How cool is that!

Pattie’s sister, Mary, had never taken her two granddaughters to Universal.  So the two of them got together and coordinated a big family outing for this past weekend.

But–and it is a big BUT–as most of you probably already know, it can be hard to make plans when a myeloma patient is involved.

After almost six months, my RVD therapy–a combination of Revlimid, Velcade and the corticosteroid, dexamethasone–has had a cumulative effect on my body.  My white counts have dropped dangerously low several times, leaving me susceptible to infections.   I’m often stiff and fatigued.  Worst of all, my peripheral neuropathy (PN) is getting worse–a lot worse.

The good news is the therapy is working–so I’m not complaining.  But it can make it difficult to travel.

Of course I caught a bad cold just a few days before we were scheduled to leave for Orlando.  But stubborn and determined as always, nothing was going to stop me from taking part in our big adventure!

And that’s OK.  As patients, sometimes we need to push our way past inconvenient side-effects in order to actively live our lives.

Like a lot of guys, when I was younger, I was a big baby whenever I got sick.  A bad cold or the flu shut me down.  I remember how I simply couldn’t enjoy life when I wasn’t feeling my best.

Now, I’m used to making the most of each and every day, even when I don’t feel well.  It’s all sort of liberating, in a way.  I’ve learned not to let fatigue, bone pain–and especially not a cold–slow me down.

After all, life is too short, right?  RIGHT!

So off we drove Saturday morning.  The plan was to meet Pattie’s family–who live about 40 minutes south of us–at Universal.

As we headed east, I knew I was in trouble when I almost fell asleep at the wheel.  Not a good sign, considering it was mid-morning and a beautiful, sunny day!

I almost always drive when Pattie and I are together.  It’s a guy thing; plus Pattie isn’t a big fan of city driving.  It is mostly a quiet, rural ride from our home, but as you get near Orlando, it becomes increasingly congested and the traffic can get really bad.

I spent four days there two years ago while I was covering ASH at the massive Orlando Convention Center.  So I sort of knew my way around.  But between bad traffic and a confusing array of highway twists and turns as everyone jockeys for position as they approach these massive parks, it is easy to get caught in a wrong lane or take the wrong exit.

I will say nothing wakes me up like a confusing set of directions and heavy traffic!  With the help of our portable on-board GPS device, we arrived at the park without incident.

So far, so good!

Once you get there, things work pretty slick.  $15 to park–then hold-on!  Whoever designed the traffic flow into the park was a genius.  Walking to the park, I felt like we were caught-up in a flowing river of humanity.   Thousands of people, all excitedly heading in the same direction.

Other than a long wait to get to the Guest Relations Window, things moved along surprisingly well.  We left home at 8:30 am, and we were in the Park before 11 am.

I titled this travelogue “A cautionary tale:  The good, the bad and the ugly” for good reason.  I’m glad I pushed myself to take this trip.  But I do have some regrets.  Hopefully, both you and I can learn from my mistakes!

But you are going to have to wait until tomorrow for more.  As it turns-out, trying to keep up with kids at a place like Universal led to a lot more drama than I needed.  So stay tuned for some fun pictures and a few close calls.

Feel good and keep smiling!  Pat