International MPN News, Science & Opinion

Go Sevy…G0!

This is a TEST, rotating front pages from the current MPNforum. The full issue is available via links, below, or you can return to the original Front Page here .

By Sevy Goulielmos

Of all the possible life-changing experiences, this is certainly one I would never have predicted would be mine.

On July 9th & 10th, 2011, I took on 250km of cycling over two days from Montreal to Quebec City in the beautiful province of Quebec in Eastern Canada for The Ride to Conquer Cancer.

I still have a big smile when I think about it. I finally stopped circling around the idea of participating in the physically challenging ride that could make a big difference to my health and potentially make a bigger difference in getting us closer to a cure for this insidious disease including our mysterious MPN malignancies.

My ET Journey is about to turn 10!

In February 2002 I was diagnosed with ET. The diagnosis came at the same time as my dad’s first big battle with colon cancer. At first I thought the troubling symptoms that I could no longer ignore and the exhaustion were my reaction to the stress of my dad’s cancer. My darling dad convinced me that he was being well attended to and I needed to see my doctor. I saw many specialists until my current hem/onc shed some light into this overwhelming new world of MPNs.

Ever the dad who wanted to make things better, once he felt a little stronger following his first chemotherapy treatment, he would get me to accompany him on long walks where we would entertain each other with funny stories and observations. We gradually resumed our cycling adventures that we had begun during my adolescence for our weekend father-daughter time. He knew I enjoyed our quality time together, so I made the effort. Two years later, his colon cancer had metastasized to his liver and lungs. Needless to say, I had little time and less motivation to make fitness a priority. I hated that there was nothing more I could do for him. Once I accepted that dad was not going to get better, the priority was to make sure he had the best, peaceful palliative care in his own home.

The years following my dad’s death were busy with work, business travel and family melodrama topped off with a roller coaster of ET symptoms. My fitness was declining and my friends would tell me that they would be putting out an alert because my smile was missing.

Fortunately, I have a lot of my dad in me. I channelled those traits because something had to change. He was always telling us about balancing ourselves mind, body and soul. He would be disappointed if we didn’t try our best. He wanted us to find the joy in our life and appreciate the challenges as a way to grow and learn and find something meaningful to do. Those big lessons and the sense of humor I got from him were my saving graces.

So nearly three years ago now I began making the effort to improve the parts of my health and fitness that I could control. I started small. It was quite a process to get myself past the exhaustion and sadness and make permanent changes. Now they feel natural. I am glad that I listened to my dad.

So, the whole truth is that it is not completing such a long distance on my bike that is most remarkable for me but the decision to just do it.

Training Towards Something Big

The initial strategies for change were brewing and finessing for a while. I had an additional good incentive to make the permanent nutritional improvements. Eating smarter also helped my feisty 81-year-old mom regain a good quality of life following her heart valve replacement surgery in October of 2007 and a not so fun series of complications. I had become her fearless personal assistant. (I stopped saying I was her caregiver early on because she was far too independent and it would not fit as an accurate description).

It was more challenging to choose a fitness program that would not keep me away for long when my mother was in a recovery phase. I had already set up my office at home, which was a remarkable help to realistically fit all my commitments comfortably into my daily routine. I am fortunate to live by the Saint Lawrence Riverand an excellent corridor of bike paths. I love the great outdoors and my bike riding became my wonderful escape even though at first it was for 30 minutes at a time. In 2009, I realized that I needed to go for a big lifestyle change if I was to be serious about bringing about any long-term improvements to my health. I decided to go outside my comfort zone and really kick start my fitness transformation.

I added a running program to my training. This was completely new territory for me. I selected a reasonable run/walk program that I could stick to and committed to 4 days a week of training. This was excellent cross training to compliment my cycling on weekends. I alternated with core and weight training during the week to build up muscle tone. I would fit all this in as an important part of my day. No excuses.

Although I started to feel my mood and energy improving within a few weeks, it took two months before I started to notice my endurance improving dramatically and my metabolism really get into gear. It was a morale boost when I started to lose weight and inches. I decided that I needed to pick a concrete fitness goal to train toward so I could stick to consistent training with purpose.

In the spring of 2009, my good friend Jimmy’s older sister passed away following her battle with ovarian cancer. The Jewish General Hospital in Montreal treated his sister where she received the best medical care possible for such an advanced stage of the disease. Jimmy wanted to do more than just feel frustrated and helpless. I was moved that he signed on to participate in that summer’s inaugural Ride to Conquer Cancer event from Montreal to Quebec City in memory of his sister.

I had been hearing about the event since my hem/onc is based at the Jewish General Hospital. The Segal Cancer Centre is an impressive treatment, support and research centre within the hospital. This was a new event that challenged participants to commit to two days of riding through Quebec’s beautiful countryside in July and raise funds that each rider collected individually through donations. The money raised would immediately be directed to help fund cancer research and care at the Segal Cancer Centre of the Jewish General Hospital and throughout Quebec.

I was so tempted to take on the 2010 challenge but couldn’t imagine training sufficiently while my mom’s care was still a priority. I wasn’t an endurance rider after all. Jimmy was a serious rider. He even rode regularly to and from work negotiating our big hills and downtown traffic. I sponsored his ride again and proudly listened to his tales of training and a triumphant finish after two days of riding in the second Ride to Conquer Cancer. I could only live vicariously through his experiences, right? From our discussions and my many questions about the Ride, Jimmy realized that it was more than a fleeting thought for me. He worked on convincing me that I had it in me to build up my training and successfully participate in the Ride. I could join his team and we would plan for team training rides too.

I was now able to run for 30 minutes straight. This was unthinkable a few years ago. I was going on longer endurance rides and it was enjoyable and therapeutic. I had my network of friends that I could line up in case my mom needed any help for the two days I would be away…hmmm… A week after the 2010 Ride was the sixth anniversary of my dad’s death. I understand that cancer can be so much more aggressive and unpredictable but it felt like I was so much more ahead of the valve disease with my mom’s care. We were actually reaching a point where her quality of life was improving. I couldn’t help thinking that I wish I could have done more for my dad. What better way to honor my dad? I could do the hard work if it meant getting even a little closer to defeating cancer so one day someone else’s loved one could have earlier detection and an easy cure.

I knew then that somehow I was going to make it happen. I signed on for the 2011 Ride and joined Jimmy’s team. Yikes…but Yay!

To test my mental resolve, I was inspired to participate in my first 5k run in September 2010. It was a superb morale boost. It showed me that I could commit to a fitness event and get it done. It was an event withinMontreal’s annual marathon event. When I entered the Olympic Stadium for the final round of the track to cross the finish line, I knew I was firmly on my way to gaining control of my health.

I rode my bike until the snow fell. In the winter, I became one of “those” people who ran in the snow with my shoe grips and I even discovered just how peaceful it was to run in the silence of a snowfall. My winter cross training included alpine skiing. It had been 15 years but a series of lessons with my 10-year-old nephew made it even more fun.

As soon as the snow cleared from the bike paths in early March, I was out riding again. I reduced my runs to 2 times a week so I could increase my riding. My weekends were reserved for longer endurance rides. My first long ride was 15 km and each week I increased my distance until I rode 95km. During the week I tried finding the hills. I was out on windy days and deliberately rode against the wind. I discovered drafting (selecting a big strapping fella to ride behind for a bit and give me a happy break from riding into the wind). I met with Jimmy on the bike path and he gave me some valuable pointers to tackle the hills and find my ideal pace for the long distance ride. I caught myself giggling a few times when I started to realize that…oh my goodness, Sevy…you really can do this!

Day 1 – The Ride Begins

And here we are. Waking at 4am on Day 1 of the Ride to get to the starting line was not a problem. The big day was here. I was so excited. I didn’t have to trick myself into thinking I could do this. I knew I could. That alone was significant. The forecast called for a sunny and dry day. My bike was tuned up and tested and my gear was packed. I had trained strategically and I found my comfortable average pace that I intended to stick to and complete my Ride with energy to spare.

So, I was the newbie in our team participating in the Ride for the first time. My friend, Jimmy, was the veteran who had participated in each Ride since it first launched in Montreal two years earlier. Joe had completed his first Ride last summer at a nice and easy pace.

We each had our special reasons for participating with the added incentive of riding in memory of a loved one. My ride was dedicated to my dad, of course! He was the person you wanted with you in good times and bad. I attached my dad’s picture with his laugh lines and big smile to my handlebars and all was well. Dad and I were going on a biking adventure.

1886 riders gathered behind the starting line. Among the riders, there were cancer survivors with their yellow flags flying high from the back of their bikes. I wondered briefly whether our MPNs would qualify us as survivors too. It was a festive atmosphere with music playing and enthusiastic riders greeting one another and wishing each other well regardless whether we knew each other or not. We were kindred spirits now.

When the emotional opening ceremonies began they announced that we had all helped to raise $6.7 million so far for this edition of the Ride to Conquer Cancer. There was cheering. We were energized and ready to ride. With a “Ready, set, GO!”…we rolled under the arch of the starting line and my Ride had begun.

The gung ho riders who were clearly closer to being Tour deFrance capable than I would ever be would begin each day first. A few would ride straight to the finish line each day without even stopping at the designated rest areas. Bravo to them! All other participants left in staggered groups. Some teams rode together and others, like ours, agreed that we should each keep the pace we were comfortable with and meet up at rest stops. Jimmy would eventually kick up his pace to 26km/hr and Joe chose a slower pace at 18km/hr. I was somewhere content in the middle with an average speed of 23km/hr.

The route we took was rather exceptional. We travelled along the historic King’s Road (Chemin du Roy), the oldest roadway in Canada. From 1737, it linked New France’s three largest cities, which was also our itinerary: Montréal, Trois-Rivières (our halfway point) and Québec City. The Chemin du Roy became the longest road in existence north of Rio Grande. Mail coaches and stagecoaches traveled these routes in the 18th century. For the most part it runs along the wide and mighty Saint Lawrence River that briefly opens up into Lake Saint Pierre, a World Biosphere Reserve. It follows the two lane Highway 138 for over half its distance where we road along the shoulder of the highway. For the remainder the King’s Road passes along bike paths and quiet country roads. I could have stopped to take pictures dozens of times but the ride, although not a race, would have taken me so much longer to complete.

I would be riding for 140km on the first day. Fortunately, the ride was broken up with rest stops every 25 to 35km. Those were good intervals that also allowed us that moment of mini sense of accomplishment of “Yay! One down!” At the rest stops I could choose from a selection of nutritious snacks and replenish my water bottles with ice and water or sports drinks. I also took the time to stretch. That helped a lot, especially by the end of each day. There was a medical tent with nurses and physicians for minor assistance or more serious first aid. There was a bike maintenance tent for repairs. Before setting off for the next rest stop, we would check the sign that announced the distance to the next rest area. And with a cheer of encouragement from the volunteers, off I went again.

I was pleased that I didn’t need to have music to entertain myself. For safety’s sake, we were not allowed to use an iPod or phone while we were riding. I initially wondered how on earth would I successfully motivate myself without my music for 250km. It wasn’t necessary. The sights and watching the road for obstacles kept me plenty occupied. Many locals had come out along the route to cheer us on. We passed through picturesque villages with ancestral homes dating as far back as the 17th century, inns, artisans’ studios and old, majestic stone churches. There were large expanses of farmland with strawberry fields, cornfields and the requisite cows and horses.

Even when I was riding alone I was aware that there were other riders close by on the same route. There were sweep vans, technical support trucks and volunteer route sentinels on bikes following the riders at different intervals. Help and cheerleaders were always relatively close. There was plenty of Ride signage marking our way with police and Ride volunteers helping us safely through intersections and across railway crossings.

This was still a very new experience. For most of the day I was riding into the wind. The long hours of riding in the sun and saddle soreness were making the last 30km difficult. It was harder to stay focused. This is when I had my minor spill. I had deliberately kept my distance from other riders all day and avoided riding in packs to steer clear of accidents.

At the end of my first day with just a few kilometres to go, I was tapping into all my happy thoughts. Then a rider up ahead took a spill. The rider just in front of me tried to avoid her and fell over. I tried to avoid them both but I overcompensated onto the gravel at the shoulder of the road and down I went completing the domino effect. We were all fine although we had some minor scrapes. My right knee landed on the gravel so it started to bleed. This is when my abundant platelets jumped into action and, by the time the medical support drove up, my bleeding had stopped. It was humorous to me and stumped the other bleeding parties and the medic.

Although, we had the option of staying at the campsite that the organizers had prepared, we happily parked our bikes in the secure area for the night and headed to our hotel. 140km…done! Still smiling. A shower and good night’s sleep was just what I needed to look forward to the next day.

Day 2 – Less Than Half Way To Go!

Day 2 was my stronger day. Knowing that I only(!) had 110km to ride today was an added good thought. I learned from my experience the first day and made a point of hydrating even better. Chamois Butt’r and zinc oxide had now become all the riders’ new best friend. Ask anyone who rides longer distances and they will explain.

Cycling for such a long distance was the most extreme quality time I have had with myself! With 250km to cover, I had plenty of time to reflect and make parallels of my training process and the actual Ride to my personal journey with my very own ET. After many years of uncertainty for the future, I reached the point where I would no longer accept being worried and waiting for bad things to happen with my health.

The changes became noticeable. I started to lose weight (find my waist) and gain muscle tone. I have long felt like a kid at heart and (at a fresh 44) my energy had improved dramatically to better match the youngling inside. The migraines became less frequent and I can officially downgrade them to the occasional bad headache. I was even sleeping better. Without knowing the outcome I chose to try something big and have a little more control with the direction of my well-being.

It will require more frequent testing to determine whether the changes to my ET in the past year are part of a regular cycle or something more significant. For a year now, my platelets have dropped to a steady 475 to 510 from the 600 to 700 range. I also had a small bounce between giant platelets earlier in the year and then back to normal in the summer. For many years my HG levels were around 120 (g/L) but for over a year have been steady at 139. More oxygen chasing the exhaustion away? So, there will still be challenges with uncertainties and that’s okay. I will remain alert and keep on going. For now, I am still armed with my daily aspirin and a growing inner happiness.

In these two days of the Ride I saw much of the old me that was joyful and hopeful returning confidently to the forefront. It made the Ride even more enjoyable even though my bike seat and I were barely on speaking terms.

What was especially heartening was that it was clear that I do indeed have special people cheering me on even if only a few really understand “what I have” and what motivated me to take on the Ride to Conquer Cancer.

The Finish Line and Other Happy Thoughts

Oh, how the final leg of the Ride was challenging! The last 26km took us through pretty, peaceful villages and meandered frequently back along theSaint Lawrence Riverand up a series of hills. As I completed the third long ascent in a row and I was as serious and focused as I could be, a route marshal finally announced those blessed words, “1 kilometer left! Bravo! Don’t give up. You’re practically there.”

As I completed the third long ascent in a row and I was as serious and focused as I could be, a route marshal finally announced those blessed words, “1 kilometer left! Bravo! Don’t give up. You’re practically there.”

I know I broke into one of my widest smiles and I was completely in the moment again. I approached the bottom of one final hill. Several dozen riders had gathered at the top and called out encouragement in French and English and applauded in unison. I felt a beautiful burst of enthusiasm.

By this point I was deeply moved by what I had done and why. I slowed my pace to take it all in. I heard my name called out over the loud speaker. Each time that rider arrivals were announced participants and spectators lined the way. They cheered me in. Once I passed under the Ride to Conquer Cancer victory arch to cross the finish line and passed between the final corridor of metal barricades, I had to take deep cleansing breaths so as not to be so overcome that I would ride into someone.

I received bear hugs and pats on the back and boisterous congratulations from fellow riders. What a feeling! I conquered 250km on a bike and did my small part to bring us all one step closer to defeating cancer.

I was smiling and calling out “Merci…Thank you” and trying to suppress the sobs that starting to sneak out past the lump in my throat. Dad would be proud and I had taken one more long bike ride with him.

It was every ounce of exhilarating to evolve from “I think I can” when I decided to register for the event a year ago to “I know I can” after months of training to the glorious “I did!!!” as I crossed the finish line. The wave of joy directed me to the event kiosk where I signed up for the 2012 Ride.

Author’s note: Cancer has been the leading cause of death in Quebec since 2005. Funds raised by The Enbridge Ride to Conquer Cancer will continue to support crucial cancer research and the discovery of new cancer treatments across the province at the Jewish General Hospital, the CHUQ, the CHRTR and the CSSS de Gatineau. This Ride is allowing us to take the necessary steps towards eradicating cancer.

For more information or to register for the 2012 Ride to Conquer Cancer events in Canada: http://www.conquercancer.ca In Australia: www.conquercancer.org.au
Take me back to the Contents

© Sevy Goulielmos and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Sevy Goulielmos and MPNforum.com with appropriate and specific direction to the original content.

*****

Contents: January 2012: (Click on RED link )

Articles:…Marty’s Stem Cell Transplant …..My Robert ….Sevy’s Ride … ..Manuela’s Journey……Drop the “D” Crisis in MPN Care….Nearly Painless BMB….News Briefs .

Columns: The Empowered Patient ….The Long and Winding Road..:..Jeremy’s MPN Life :… Body-Mind-Spirit and Prayer .
Arch’s Corner
.

...Join Your MPN friends at the Forum

(If you prefer hard copy, there is a PRINT/PDF option at the end of each article.)

Raise your voice in the Forum, COMMENTS box after each article.
!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: