Ten Year Anniversary Living with Polycythemia Vera Blood Cancer

Inspire by Living! 

by David Wallace

Your numbers do NOT always reflect how you feel, so important to remember!

PV Reporter riding the Blue Ridge Pkwy, 10 years with PVI’ve felt like crap before and my numbers were good.  How you feel is one of the most important measurement criteria, in my opinion.  Counts were off on my last heme visit, about a month ago, low white blood cells.  This was my worst CBC (complete blood count) in 3 years and perhaps a cause for concern, as I was no longer in remission….technically.  Dose adjustments were made on my meds and hoping for improvement on 6 week follow up.  I was depressed for a couple of days and then made plans for a 3 day motorcycle trip through the NC and VA mountains.

One of the many things I love about my doctor, he asked me “what I thought about the dosage change,” this kind, caring, collaborative decision making process has been our MO since the very first visit.  He understands and respects that I have a pretty solid knowledge on PV and the various treatment options, but he is the expert and I trust his judgement 100%.

In early May, I celebrated my 10 year anniversary living with Polycythemia Vera (PV) blood cancer.  I have definitely had my ups and downs during the journey, but that is not the focus of this article.  I choose to focus on the positive (as much as possible).  In celebration of the big day, I issued myself a challenge to do something I have not done in years and focus on the fact I was feeling strong in spite of my numbers. 

Living with a Myeloproliferative Neoplasm can be eased by:

  • having a positive focus
  • eating right (I rarely eat red meat, drink a healthy smoothie most every morning and try to limit alcohol consumption)
  • exercise (walking my dog 15 – 30 minutes/day is my fav)
  • getting outdoors for sunshine
  • having a pet
  • a good night’s sleep, 8 hours recommended
  • stress management
  • minimizing contact with chronically negative people
  • meditation
  • massage
  • …….and the list could go on, now we downshift to get back on track

The Journey Begins

riding the Snake, hwy 421 on mpn cycle trip

A great stopping point coming down the Snake!

I decided to embark on a 790 mile motorcycle trip through the scenic Blue Ridge mountains.  My happy place is motorcycle riding where thoughts drift into a peaceful vibe with Total focus on the road ahead.  It’s relaxing and even cathartic to push the limits on the open road……I may have exceeded the speed limit once or twice along the way.  The trip was 3 days of lively delight (and some hell-raising) with perfect 78 degree Spring weather, flowers and trees freshly blooming with twisty roads as far as the eye could see.

I set out to ride 2 of the best roads in the U.S., the Blue Ridge Parkway, an easy ride that runs from the Great Smokey Mountains, NC into VA.  Also on the agenda was the Cherohala Skyway, a relatively unknown riding road to most bikers, with 43 miles of long sweepers and very little cage traffic (that’s biker talk for cars).  It’s an intermediate ride with breath taking views.  As it turned out, I had a loose agenda.  My initial goal was getting to Bristol, VA the long way, avoiding busy interstate roads and checking in for my only night’s hotel reservation.

I was enjoying the ride so much on this perfect Spring day, I took the extended route.

Once the fun part of the ride starts, about 50 miles north of Charlotte, I carve my way from North Wilkesboro, NC to the VA border taking highway 18 and the Blue Ridge Parkway.  Crossing into VA, I hopped onto hwy 58, this beautiful stretch is referred to as the “crooked highway” as it winds through southern VA, flanked by mountain streams tucked along the highway border.

I enjoy pulling over to stretch to my legs, grab my water bottle and sit by the fast flowing, crystal clear mountain stream….relaxing while taking in the peaceful sounds of nature’s voice, so calming.  I really didn’t expect to encounter a long gravel road (prefer to stay off them, if at all possible) that spanned 15 miles, just outside of Pensacola, NC.  But a mile in, there was no turning back, so I “braved the elements” and powered through.

Watch the video below to see the rocky road and hear the mountain stream:

Day 2 of my trip was delayed by drinking coffee (a no no on my diet, tea is the perfect replacement) with breakfast at the hotel.  I don’t dare leave the comfort of a hotel bathroom for the strong likelihood of being caught in the woods with “pressing needs.”  If that’s TMI….abandon ship, that’s how I roll!  So that cost me over 2 hours and made my goal of reaching Telico Plains, TN , where I normally start the final day riding the Cherohala Skyway, impossible now.

The Snake Looms Near

Once I got rolling, I was focused on riding the Snake, only 20 minutes from Bristol, located on Hwy 421 leading from Bristol to Boone, NC.  “The Snake” has challenging, hair pin turns, twisting down the mountain like a corkscrew spiral and offers gorgeous views of the mountain and lakes along the way.  That was an exhilarating run!  The rest of the day was spent exploring the beautiful NC mountains at leisure.

mpn retreat pv reporter lake lure

Lake Lure, NC

The 3rd and final day, I left the quaint, mountain town of Waynesville, NC looking like a postcard with the “Smokies” beaming their morning beauty.  Took the LONG way home, avoiding long interstate runs anywhere near Charlotte (my hometown).  I stopped in one of North Carolina’s crown jewel, Lake Lure, for lunch….love the town, flanked by Chimney Rock, enjoying taking it all in.

Upon my return home, I felt renewed and excited that I was up to the challenge and crushed the PV demons!  

A few days later, I went for my 6 week follow up CBC and my counts were back to normal.  I was in remission again…..hallelujah, that was the best news and 10 year anniversary present to boot!


About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

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