Hodgkins Lymphoma – 5 Years in Remission

2015-09-01 20.14.04Today is September 1, 2015, and I have been cancer free from Hodgkins Lymphoma for 5 years.  I have thought about this day over and over.  I have both longed for it, and feared it.  In the past two years I often dreamed of various exciting ways to celebrate the day.

I was diagnosed with Hodgkin’s Lymphoma in January 2009.  I relapsed only a few months after the initial treatment, and on the first day of September 2010, I received a stem cell transplant.  If you are interested in clicking way back through the old posts on this site, you can read the whole day by day story.  Or, if you are here because you or someone you care about is considering a transplant for Hodgkin’s Lymphoma, here is a video of my actual transplant as it happened.

Why is the 5 year mark so important?  Thank you for asking, that is an excellent question.  It will help to explore a brief bit of medical history.  Hodgkin’s Lymphoma is an old cancer, meaning, doctors have known what it is, and how to recognize it for over 100 years.  It used to be fatal, as were most cancers.  But the development of the ABVD chemotherapy regimen improved the odds, and many studies have shown that approximately 80-85% of newly diagnosed Hodgkins Lymphoma cases, survive at least 5 years from the date of diagnosis.   However, long term studies show that approximately 30% of Hodgkin’s Lymphoma patients will not respond properly to that treatment.  These are cases are called relapse and refractory cases and the odds of long term survival are lower for these people.  I was in the refractory group.

For those of us in that group of relapse and refractory Hodgkin’s Lymphoma, a secondary or salvage treatment involving high dose chemotherapy and a stem cell transplant is usually on the menu. Of this group of patients who are essentially on plan B, after failing plan A, the probability of success is less than 50%.   And for those who relapse within 1-3 years of the transplant, the prognosis is not good.  However, these same studies show that the patients who do not relapse, and achieve 5 years of survival without progression of the disease, very often go on to live normal Lymphoma free lives.  It is difficult to put percentages on survivability at this point, but the basic fact

Melanie, Me, and Amy. Melanie came to dinner with a latex bald cap to remind me what I looked like 5 years ago when I had Hodgkins Lymphoma

Melanie, Me, and Amy. Melanie came to dinner with a latex bald cap to remind me what I looked like 5 years ago when I had Hodgkins Lymphoma

is that reaching 5 years of survival is a really positive indicator that a person will continue to be free of the disease indefinitely.

So, the day has come!  I received my transplant 5 years ago today, and I am still here.  I have had no return of the disease, and I feel great.  So today I am thankful for the chance to keep going.  I appreciate the good people in my life and I respect that happiness comes from within.  There is no amount of money, cars, clothes, prestige, status or pixel resolution that can bring long term happiness.  Those things can help, but they are only band aids.  The real happiness, or healing of a wound comes from inside and being content with who you are.

I have not made any particular plans to celebrate.  I have come to the conclusion that just living my life is enough of a celebration.  Although I did receive some beautiful hand made cards and letters of encouragement from the kids, and Amy planned a very nice dinner this past weekend with a friend of mine who was there 5 years ago to witness all my misery.

It won't be me sitting in this chemo room

The End of an Era

Think back to January 9, 2009.  We were all trying to figure out what this new economic downturn was going to look and feel like, Barack Obama was about to be sworn into office for the first time, and the majority of the western world wouldn’t know the name Capt. Sully Sullenberger for 6 more days.  I was sitting in my car outside a non-descript doctors office on Medlock Bridge Rd in Duluth, Georgia replaying the past ten minutes when Dr. Gupta had told me, “You have Lymphoma,”  and “You will definitely need chemotherapy,” and “You need to see an oncologist, and I think you should go there right now.”

That day has become a pivoting point in the story of me, and I really think of my life in terms of “before cancer” and “after cancer.”  The problem though, is that the period I am calling “after cancer” includes all the surgeries, all the stress, all the chemotherapy, all the agonizing rides to the hospital, the uncertainty, and the pain.  And while the beginning of cancer was marked with a very precise and memorable encounter at Dr. Gupta’s office, the end of cancer seems far more ambiguous.  I wrote on this blog way back when that I was worried I would turn into a hypochondriac and never be content that a cough is just a cough.

It won’t be me sitting in this chemo room

Yesterday that changed.  Yesterday, I was at Emory Winship (aka The Cancer Factory, thank you Carcinista) for my scan results.  For the un-initiated, a quick lesson here.  I have been finished with active cancer treatment for 3 years, but the tumor that was the site of all my woes is still inside.  They tell me it’s all burned up and calcified and useless now, but it’s there.  So it is necessary for me to return to the hospital for a PET Scan about every 3-4 months.  This is how the doctors take a peek at my insides and make sure the tumor is behaving itself.  And these appointments do not always go as planned.  In May 2010, after 16 doses of nasty chemo, and 5 months feeling really good, a scan showed the tumor was raging inside my chest.  Another time, about 12 months after my transplant, the scan showed an unexpected change in cell activity.  So, walking into this appointment is always a tense moment.  They can send me home with smiles and cheer, or they can bring me back into the world of chemo infusions, sickness and fear.  It’s a little like waiting to hear a jury announce guilty or not-guilty in a criminal trial.  The defendants will immediately take one of two vastly different paths.

So yesterday, the news was good.  It was my third scan of 2013 and about the 5th or 6th in a row that showed zero change.  I was expecting that news, but the most surprising news followed the verdict.  My doctor is comfortable enough with the stability of my tumor that she says I don’t need to return for a scan for 12 months…and when I come back, they will use a CT scan instead of the powerful PET scan.  In essence, what they are saying is that my risk of cancer is now lower than the risk of more exposure to the radiation presented in a PET Scan.  They are betting on me!   This is easily the MOST positive news I have heard about my health since January 2009 and I was walking on air the rest of the day.

 

Maui Coastline near Haiku - At the beginning of the Hana Highway

Why Would You Go To Hawaii?

Maui Coastline near Haiku - At the beginning of the Hana Highway

I consider myself a professional traveler.  Not because I travel ALL the time (debatable), and not because I am so darn good at it.  But because I love it, and consulting people and companies on how their employees will travel is my profession, so I better know what I am talking about.  I am supposed to be one of those who are “in the know” and who possesses an ability to spew first hand insight and experience on a wide variety of destinations.  Anything less and I would just be a generic guide book.  So, when I travel to a new place, I am relieved to feel a sensation of, “Yup, this is exactly what I expected.”  It’s a little anti-climactic and maybe even boring compared to the wonder of new discovery, but it re-assures me that I would have done the right thing by my customers.  For example, you don’t want your cardiologist to spread your ribs open and suddenly declare to everyone else in the operating room, “Oh wow, this is totally different than what I thought a heart would look like!”  Not cool.

For many years, I have held an opinion that people who live in the eastern half of the United States shouldn’t waste their time traveling to Hawaii.  My logic says that if you are seeking beaches, oceans, palm trees, sweet fruity cocktails, exotic music, perpetual sunshine, golf courses and sunburned Brits, you would be a fool to fly 10-12 hours to Hawaii, when you could find all the same vacation staples in the Caribbean, Mexico, or even right here in our own Florida Keys, with only a 3 hour flight.

And then, I went to Hawaii.  Now I have been there before, twice in fact.  My previous trips to Hawaii both lasted only 2 nights and were confined to Honolulu and Waikiki Beach.  This time, I had 6 nights, and I went to Maui and Honolulu.  As mentioned above, my profession is travel planning, and also as mentioned, I am more effective at this job if I have first hand knowledge of a destination.  Hotels have known this for a long time and they make a frequent habit out of getting travel managers out from behind their computers, and into their hotel rooms.  All the glossy brochures, and flashy websites money can buy don’t compare with a trusted travel pro saying, “Oh yeah, I just stayed at the Marriott Wailea last fall and it was fantastic!”  So, this trip was sponsored in large part by Marriott Resorts of Hawaii.  The hotel rooms were free and they even paid for part of my airfare.

But this post is not about Marriott (you can look up my Trip Advisor reviews for that, or call me to book a vacation or cruise).  This post is about Hawaii itself.  Everything I thought I knew was blown away.  If you have ever pondered the vacation dilemna of Hawaii vs. Caribbean, or Hawaii vs. Mexico, I can only say you are actually comparing Jerk Chicken vs Kalua Pork.  Yes, both are delicious cooked meats and very enjoyable in similar settings, but totally different in every way.

I’m being vague and this is getting long so here’s the poop.  The most obvious difference was the mystical presence of the

Another section of the Hana Highway on Maui. This is south of Hana, close to the unpaved section

Hawaiian landscape, yes the land itself is what impressed me most.  Of course, I am a visual person so that was easy, but the dramatic up and down of the mountains, valleys, river gorges and coast lines defied my notions of what the earth can do with it’s surface.  The word moonscape kept coming to mind which was ridiculous because the dry rocky surface of the moon is completely opposite to what I found in Maui (except for one particular black volcanic rock beach).  I think my mind kept going to that word because what I saw seemed unearthly, so my little pea-brain jumped to the conclusion that if this is not Earth, then it must be the moon.  Sometimes I hate that stupid pea-brain.  I wish I had taken a photo of a particular valley we drove through on Oahu that combined every superlative you can think of for steep, green, lush, tropical, but also expansive and grand.  If you get there, it is the Likelike Highway between H1 Exit 20 in Honolulu, and Kaneohe.  I drove the road completely by accident, after taking a wrong turn on the way to the interstate.  Thank goodness for wrong turns.

Reason number two I loved Hawaii…the local hospitality.  Maybe I just haven’t explored the right Caribbean Islands, but Hawaii seemed equally willing to accommodate the beach bums and pool loungers, as it was the cyclists, trail hikers and explorers.  In Hawaii, I felt comfortable and safe everywhere we went.  I cannot imagine stopping in at a locals store 30 minutes outside Philipsburg on St. Maarten, or exploring the rainforest and looking for waterfalls in remote parts of Jamaica.  Or even being present ANYWHERE but the main tourist drag in ANY PART of Mexico (Lo siento Amigos.  Don’t get me wrong, I love Mexico and I think it is a wonderful place to vacation, but stay near the resort).

There are many more reasons like the highlight of  Maui, the Hana Highway where my son and I hiked to waterfalls and bamboo forests, and also climbed like crabs over a bizarre beach of smooth black grapefruit sized rocks.  There was also the man made wonder of Pearl Harbor on Oahu.  I almost skipped this iconic locale as well because of the very fact it is iconic.  I thought I knew what it was about and what we would see, but I was so wrong.  No matter what you think you know about Pearl Harbor and WWII, go to Pearl Harbor.

I could write more, and there is more, but this post is also not intended to be a travelogue or guide to visiting Hawaii.  Those things have been written.  My purpose here is to apologize for my uninformed generalizations in the past, and to state my new opinion that Hawaii is a place all of its own and I wish everyone could experience it.  I will be back again, and again, and again.

netflix

If You Have An Opinion of Netflix…Read On

First a little apology.  I have not been writing very much this summer, because I am usually packing my suitcase or unpacking.  Just added up the numbers and I have been away from home 47 nights over the past 4 months.  That’s a lot for me, and tonight is one of those nights.

I am in Orlando, Florida (for the 3rd time this summer), and I am attending the annual KIPP School Summit.  KIPP is a network of high quality charter schools all across the country, and many of their schools book their student year-end trips through my company, VenueQuest.  Tonight, they were presenting their annual awards at a Gala Dinner which I had the good fortune to attend.

Early in the evening, we were treated to a stomp dance performance by 1st grade students from the stupUPbreakDOWN dance group at KIPP LA.  A little later in the dinner KIPP Foundation CEO Richard Barth came out on stage and told a story about how the team and their parents just explained to him backstage that they would be flying home late tomorrow night.  He assumed they scheduled a late flight because they would spend the day enjoying Disney World, but soon learned that the group had wanted to go to Walt Disney World while they were here in Orlando, but they did not have enough money to make it happen.  So Barth opened his speech with this story and then gave out his email address and challenged all 3,000 participants at the conference to pitch in by tomorrow morning to raise the approximately $5,000 it would take to get all these kids into Disney for the day.  The room was buzzing and I could tell that many attendees were already pulling out their phones and emailing Mr. Barth.

He proceeded to introduce the winner of the KIPP Giving Tree Award, which this year was presented to Mr. Reed Hastings, Founder and CEO of Netflix.  Mr. Barth gave the typical rundown of all of Reed’s accomplishments and philanthropic efforts which lean heavily toward supporting education and charter schools.  I learned that at one time, he was even the President of the California State Board of Education.  Mr. Reed Hastings came out on stage and accepted his award.  Then, stepping to the podium he said, “Richard, I am sure that you are going to receive a lot of emails tonight offering money to help get those children to Disney World tomorrow.  My only request is that you decline all of them, and accept mine.”  And with that he smiled and walked off the stage.

Netflix had a major public relations snafu in 2011 as they changed subscription policies, then changed back…added a new division, then closed it down.  I was a subscriber back then, and I have remained a subscriber.  After tonight, I believe not just in the quality of their service, but in the integrity and humanity of their leader.  For me, his spontaneous action was the highlight of the evening, and there is a healthy stream of twitter and facebook chit chat that suggests I am not alone…and that’s saying something because not 20 minutes before he took the stage, we all gave a standing ovation to the closing keynote speaker, President Bill Clinton.

Dominic cheering for the TNT bike riders in Lake Tahoe

Cancer Is Like Riding A Bike

This is me at approximately mile 6 on that 7 mile climb.

Fact #1:  It is springtime and you have two dozen other friends asking you to donate to their walk, run, mud wrestle or competitive rope climb.

Fact #2:  At some point (maybe even at multiple times) you have questioned the effectiveness of donating money to medical research.  I mean with all the money you yourself have donated, shouldn’t we have a cure for something by now.

Fact #3:  I fought a form of Lymphoma for 2 years that would have killed me in the not so distant past, and instead of dying, I returned to a healthy life and will be there to see my son off to his first day of kindergarten in a few months.

So, this is my pitch to you.  If you are happy that I am still around, find a way to trim your annual budget by $10 (or more) and click right here, and make a donation to the Leukemia & Lymphoma Society Summer Cycling Team.

For anyone just tuning in, here is the back story.  I fought Hodgkins Lymphoma for 8 months in 2009.  But instead of responding in its usual and predictable manner and going into a sustainable remission, my cancer refused to go away.  So my doctors had to resort to what is called Salvage Treatment.  Hardly an encouraging term.  I received a whole lot more chemotherapy called ICE and VTEPA, weeks of mediastinal radiation treatment for Hodgkins Lymphoma, and a stem cell transplant in 2010 which is a process of bombarding your body with so much constant chemotherapy that it kills every cancer cell that ever even thought of reproducing. The side effect to this treatment is that it is also very effective in killing the body where the cancer cells live (that means me).  Like a knight in shining medical grade PVC tubing, the previously frozen stem cells are brought in at the last moment to help the body start producing a new supply of white blood cells, platelets and other important stuff.

My point is this.  As recently as the 1970’s this treatment did not exist.  And even well into the 80’s and 90’s the treatment was not reliable on a long term scale. There was a time when transplants were considered successful if you left the hospital alive.

So while the concept of a cancer free world is just a naive fantasy, the research your donations have made possible is providing the cancer fighters in the world with more and more options every year.  More and more chances to live.  More chances to see their children go to kindergarten.

The Georgia Leukemia & Lymphoma Society Team in Training Summer Cycle team has made me their Honored Hero this year.  I am proud to serve the role because I am without a doubt, a product of the past fundraising efforts by LLS.  Without the research they have funded, I might have survived the first year, but when the regular treatment failed, I would not have had a plan B to fall back on. And even in today’s world of what we all call modern medicine, there is still a lot that is unknown about cancer. A lot of the treatment relies on having plan B, or Plan C, or D, E, F… A common question for cancer patients to ask their doctor is, “okay, but what if that doesn’t work.”

Cancer is not like a cold or a flu. It will not “run it’s course and then leave you alone.”. It is a battle to the death.

Entering the finish area after 100 miles. Thank you to the doctors, nurses and research who made it possible for me to survive and thrive after cancer

So please consider standing up with my friends who are out there training 3 or more days per week. In a few weeks they are all going to pack their bikes and their spandex and hit the road to Lake Tahoe where they will each attempt to ride 100 miles around the lake in one day. This may sound romantic and beautiful, but it stretches a persons abilities to the breaking point. It is usually cold, the road is not smooth, and it is mountainous. There is a section toward the end where each of these riders will have to continuously pedal uphill for 7 miles. I challenge you to go jump on a bike and ride 7 miles on flat ground. You could do it, but it will take some time and you will feel tired at the end. Now imagine never having a spot to coast, or to spin the pedals freely as momentum carries you. And imagine warming up for that climb brid haunting your body over 70 miles of hills earlier in the day. When I rode with the team last year, I saw a lot of people give up on that climb. They just couldn’t do it anymore. I saw them cry, and I saw them load their bikes into crowded vans that picked up the people who quit, got injured, or whose bikes suffered irreperable damages.

That is what cancer feels like. It is constant pain, constant struggle, and not even knowing if you will make it. You see people who have been fighting with you die, and you wonder if you will join them despite all your efforts to fight. I have great respect for these people who are all trying to raise awareness and money. So please join me in giving a few dollars to them.

All of the donations I collect will be distributed to the fundraising accounts of the members of the cycling team prior to their event. I want them to succeed in their fundraising so that they come back to ride and raise money next season. I never know when I might need whatever treatments they are funding right now.

So, Do You Come Here Often?…

If you do come here often, then I suggest you seek additional forms of entertainment.  For anyone who had become used to my frequent but irregular blogging back during the Cancer days, you might think that my blog stopped working, or that I forgot how to type, or maybe even that I had died and nobody knew how to login in to my WordPress account to update the blog.  But none of that is true.  My lack of writing can be blamed on only one thing…me.  When I was sick, I had more time to sit around thinking and writing.  But I am proud to say that I have fully joined the world of the living and I am busy people!

Most of this winter, or as I have come to call it, “The Winter That Never Was,” I spent working.  For those who don’t know me personally, I own a Meeting Planning and Group Travel Management firm called VenueQuest.  We coordinate the logistical planning of conferences, training meetings, incentive trips and school outings.  Unlike the past few years, business has been good lately and is demanding my attention.  I am very proud that we took a big step last month and moved our little business out of its previous home which dominated my basement and moved into a real office space.  For my Atlanta readers, we are now located just down the street from North Point Mall.  The two things I have learned the quickest about commercial space is that I feel a lot more productive there than when I was working at home and alternately fielding client calls, feeding or walking the dogs, cleaning the kitchen, or occasionally tending to nagging yard work.  However, the flip side to the efficiency is that there are interruptions from total strangers.  People just come walking into the office wanting to sell us stuff.  I was not expecting that.

I think I should stop writing now.  This post sucks.  I know I don’t have anything to say and I just started writing out of guilt.  However, I did attend a conference last weekend that I am going to write about, so don’t unsubscribe yet.  I promise I won’t completely waste your time the next time I write.

 

Thanks…

Thanks. To my body for not quitting on me last year…we’ve got a lot more life to live together.  To my little man, for making me laugh and even for sometimes making me grit my teeth. To the members of my extended family, Laura Gearhart, Ray Gearhart, Armando Gennari, Barb Gennari, Renita Wilkinson and Doris Macdonald for your love. To all the VenueQuest customers who have stuck by us and helped make 2011 a great year. To our VenueQuest team members Melanie Mottayaw Koenig, Karen Imperatore Kovac and Shenika Brown for your dedication and loyalty. To the members of the 2011 Georgia TNT Cycling Team for teaching me to ride on skinny tires and pulling me around Lake Tahoe. To my dozens of wonderful neighbors in Mayfair/St. Clair for making us feel like we are really part of a community and not just living in the burbs. To my distant friends spread from the west coast to the east coast and everywhere in between who inspire me and teach me new perspectives, new empathy and new skills all the time. We may not live near each other, but you remain high on my list of importance. And lastly, to Home Depot…like any good drug dealer, you are always there to enable our unbreakable addiction to home improvement. Now, let’s talk turkey!

Northside_BMT-Unit2

The Best Bone Marrow Transplant Center in America…It’s Right Here in Atlanta

I don’t often re-post articles on this blog, but this one was to good to pass up.  It was written by Jonathan Copsey, Editor of the Milton Herald, a local newspaper in north Atlanta and part of the Appen Newspapers network.  In the article, he details how Northside Hospital, which is only 20 minutes away from where I live, but ironically, not where I received my BMT transplant, has just been named as having the highest survival rates of any bone marrow transplant facility in the United States.  Posted below is the full text of his article which was published last week.   Besides the organizations mentioned in the article, I think this is great news for BMTinfonet, and our local LLS chapter.

Northside Hospital blood, marrow transplant program reports best survival outcomes in nation

Re-Posted from the Milton Herald, written by Jonathan Copsey
September 14, 2011

ATLANTA – The National Marrow Donor Program (NMDP), the federally funded organization that facilitates most matched unrelated donor transplants in the United States, has released outcome data that indicate Northside Hospital’s Blood and Marrow Transplant (BMT) Program has, by far, the best survival rates for matched related and unrelated transplants of any program in the country. The most recently released outcome data was based on related transplants performed Jan. 1, 2008 to Dec. 31, 2008, and unrelated transplants performed Jan. 1, 2004 to Dec. 31, 2008, with 100-day follow-up post transplant. Rankings are among BMT programs that performed more than two transplants during the research period.

Transplanting healthy marrow may be the best and only hope of a cure for life-threatening diseases such as leukemia, lymphoma and other blood disorders. The BMT program at Northside is one of the largest and most comprehensive programs in the nation, serving patients who require bone marrow or stem cell transplants. Patients don’t need to travel far to have access to the full range of available hematopoietic transplants, including those from matched related, matched unrelated and haploidentical donors and cord blood transplants. All services are conveniently located at Northside’s Atlanta campus.

In 2010, 175 transplants were performed at Northside, placing the hospital among the top 10 percent of all BMT programs in the nation in terms of volume. The one-year survival of matched unrelated donor patients transplanted at Northside was 77 percent, the best of any BMT program in the country. Furthermore, the actual survival was 19 percent above the survival expected by the NMDP for Northside, based on the risk profile of the patients transplanted (56.3 percent). This is the greatest positive variance between expected and actual survival for any BMT program in the nation.

“Although transplant volume is important, our philosophy at Northside is focused on providing the most patient-friendly experience and the best clinical outcomes for patients undergoing BMT,” said H. Kent Holland, M.D., medical director of the BMT program at Northside Hospital. “The compassionate and state-of-the-art care provided surpasses that of many of the country’s most prestigious, academically oriented programs.”

In 2010, Northside also was selected to join the National Cancer Institute Community Cancer Centers Program (NCCCP), an exclusive group of 30 community cancer centers. Northside is the only hospital in Atlanta and one of only three hospitals in the southeastern United Stated chosen for this prestigious honor.”The BMT program’s high level of expertise in blood and marrow transplant therapy and strong portfolio of clinical research play an integral role in Northside’s award from the NCCCP,” said Bob Quattrocchi, president and CEO of Northside Hospital. “We are extremely proud of the commitment to quality of the more than 200 professionals that work in our BMT program.”

An accomplished group of nationally recognized physicians, along with a team of highly trained professionals, spearhead the amazing work that takes place in Northside’s newly renovated inpatient and outpatient BMT units, laboratory and blood donor center. Together, they provide patients with promising hope for a disease-free existence.

For more information about the Blood and Marrow Transplant Program at Northside Hospital, visit www.northside.com and www.BMTGA.com. For more information about the National Marrow Donor program, visit www.nmdp.org or www.BeTheMatch.org.

Dominic in his fireman costume

Innocent Littleness…please stay a little longer

To all of you really veteran parents, this may seem trivial, but it is the night before Dominic starts pre-K and I am a mixture of excited for all of us, and also a little sad.  I can so vividly remember the first few days of being a new parent and feeling like time had slowed down to less than a crawl as days and nights blurred together and the enormity of the responsibility started sinking in.  Then, fast forward to this summer and he has grown into a little boy with a sharp, but boyish sense of humor.  He is creative and smart enough that he has a little wit in the way he talks and thinks, but is little enough that fart jokes still trump all forms of humor.  He also has a bright and active imagination, sometimes a little too imaginative for his friends (and parents) who get tired of the way he takes on the role of director and know-it-all, in playing out the scenes in his head.  He has always done things his own way, and I guess as the kid of entrepreneurs we have always admired that about him.

Dominic in his fireman costume

So, a few days ago, when his day care announced that Tuesday would be hat day, we happily helped him select a hat to wear to class that day.  It did not surprise me in the least when he selected one of his many firefighter helmets.  Dominic loves to play fireman and less than a month ago, in the blazing heat of a Georgia July afternoon, he wanted to wear his full kids firefighter costume when I took him along to pick up lunch from McDonalds.  His full costume consists of black and yellow rubber boots, full length black canvas pants, a zip up long sleeve black coat, and a belt with numerous tool holders on which he attaches a flashlight, toy walkie talkie, plastic ax and goggles.  Almost no detail is missed…he looks like the worlds smallest firefighter.  He wears his outfit with pride, and on that day, did not complain at all about the heat.  So, wearing just a fire helmet to class seemed like it would be no problem.  During the whole drive to the school, we talked about what kinds of hats his friends would be wearing.  We wondered if the teacher would wear a hat.  It was THE topic of the morning.  He marched across the parking lot, through the lobby, and down the hallway with that helmet sitting high on top of his head.

Then, as we pushed open the glass door to his room, I immediately noticed that only one other kid was wearing a hat and that was a baseball hat.  My eyes shifted to Dominic and I was devastated to see him quickly reach up and without a word, remove his helmet from his head.  I could just see the embarrassment running through his little mind at being the only kid to wear a special hat.  He walked over to his storage cubby and told me to just put the helmet away in the cubby.

This is why I am a little sad about him going off to pre-K.  As much as I want him to grow and experience all the world has to offer, those experiences are also going to take away his innocent littleness and once it is gone, we will never, ever see it again.  It made me wonder what kinds of things we would all do if we had absolutely no fear of being judged, rejected, questioned or criticized.  Feel free to comment and tell me what you would do.

Boardwalk sign at Ocean City Maryland at dusk

A Midwestern Boy Goes to The Shore

Boardwalk sign at Ocean City Maryland at dusk

Boardwalk at Ocean City Maryland

As a travel professional (and wannabe travel writer), I have been to a lot of places across the globe.  And at this point in my travels across the United States, I rarely find places that are truly unlike anything I have ever seen before.  I can almost always compare some element of what I am seeing, to a place I have previously visited.  Not so with Ocean City, Maryland, where I found myself for four days during a weekend at the end of June.

While preparing for this trip, I was discussing the destination with someone who was explaining the boardwalk concept to me.  I must have looked puzzled because I was asked, “Haven’t you ever been to a beach?”  I was a little shocked.  Of course I have been to beaches.  I grew up in the Great Lake State, I’ve lived in Florida twice and swam, waded, walked or fished on all of it’s various coastlines.  I’ve traveled all along the Pacific Coast from the Fish Market in Seattle to the cliffs in La Jolla, the tranquil bay in Puerto Vallarta and asked Angela to marry me in a completely out of the way little beach town in Costa Rica.  I’ve explored half a dozen Caribbean islands, walked the expansive stretch of Waikiki Beach in Hawaii, and the postage stamp sized beach in Vernazza, Italy.  Oh, you’ve never heard of that last one…do yourself a favor and click the link.

After that conversation I realized that despite my travels, I had never been to an Atlantic Ocean Beach, north of St. Simons Island (on the Georgia coast).  The iconic beach towns of Virginia Beach, Atlantic City, Jersey Shore, Long Island and Cape Cod are all mysteries to me.  Of course, in my profession I am well versed in what to expect from their big city cousins like Washington DC, Baltimore, New York and Boston, but I have never seen where those cities go to relax on hot summer weekends.

So…what happened?  We came across the bridge onto the stretch of land that is Ocean City, Maryland on Friday afternoon and it was like stepping back in time, or like stepping sideways into the real version of a modern oceanfront developers retail fantasy.  Did you follow that one?  I will elaborate.  At one point, after walking past dozens of actual mom & pop gift shops, independent and one-of-a-kind local restaurants, real street performers and a fully functioning permanent carnival, I commented to Angela, “This is really authentic.”  The sentence was not even all the way out of my mouth when I new it was an absurd thing to say because this actually was an authentic vacation experience.  Nobody had conceived this entire Boardwalk in a conference room with a storyboard and a scale model.  No sponsorship deals existed.  I didn’t see a Bubba Gump, Chili’s or Johnny Rockets anywhere we walked (I have since confirmed via Google Maps, that these restaurants do not exist on the island…the closest Chili’s is 31 miles away.  Crazier yet, the closest McDonalds is on the north end of the island, 2.5 miles away!).  This place was the real deal.  The little french fry shop my wife had gone to as a child, was still there, still greasy, and still only sold french fries…and no t-shirts.

Another comment I made to Angela during our visit was, “This would be a really hard place to book a program for a client.”  Why?  Because no two hotels appeared similar.  Yes, there was a clear line of demarkation between those with beachfront access and those across the street, but other than that, I would not have known anything about any hotel on that island because just as with the restaurants, there were no familiar brands.  At this point, I must say that we have always taken great pride in the fact that at VenueQuest, we always drive a large share of our client bookings to independent and “small chain” hotels because we commit a lot of time and energy into learning about them and what they have to offer.  But the abundance and variety of small hotels, motor inns, B&B’s, resorts and guest houses was only matched by the number of times my son asked for money for a toy shop, arcade, ride, funhouse, midway game or one of those ridiculous crane games that have the 3 pronged claw with all the grasping power and torsional strength of sauerkraut.

There were many highlights of this trip.  Among them was not the 13 hour drive from Atlanta, although without that, I would not have experienced the Chesapeake Bay Bridge which starts out as a bridge, then becomes an underwater tunnel, then jumps back out of the water to be a bridge again before plunging under the water a second time, and then finally rising up one last time to transition back to terra firma.  It was the most bi-polar bridge I have ever seen.  Why does the Chesapeake Bay Bridge go up and down?  I never got an answer.  I assumed it was because the aircraft carriers that sail in and out of Norfolk are too tall to go under a bridge, but I also suppose it could have just been engineers showing off.

Early on our first morning at the Frontier Town campground, Dominic woke me and insisted we go fishing right away.  I obliged, but we came completely unprepared with fishing rods, hooks, lures and bait.  We should have brought chicken necks, string and a scoop net.  There was only one type of action off that pier and it was crabs.  I should have expected that one.  At least the goofy southerners trying to catch crabs with their fishing poles were good entertainment for the other fisherman when the bite was slow.

On our second day, we spent the entire afternoon at Angela’s aunts house for the official family reunion portion of the weekend.  It was great for me to get to really spend several hours with the whole family and get to know everyone a little better.  Thanks to Jane for hosting, and to Mark for organizing the old farts vs the young farts kickball match.  I introduced the good old Italiano game of bocce ball to this Pennsylvania family and some of them picked up the technique so quick they gave me a bad beating.

And finally, before departing on the last day, Angela took me for a real Maryland crab feast.  She has talked about this rite since we met, scoffing at every mention of crabs on any restaurant menu, anywhere in the world…maintaining her position that there is nothing like Maryland crabs.  Having now experienced it for myself, I agree with her and still occasionally taste the spiciness of the old bay, the saltiness of the sea and the savory of the butter in my imaginary place of excellent meals from days gone by.  That crab feast now sits right there in that box of memories, the most recent addition of a collection containing the short ribs from Commanders Palace in New Orleans, the fresh salsa at the bar on the ferry dock on Isla Mujeres, the first time I had heirloom tomatoes with Joe and Gemma at the Ferry Plaza Farmers Market in San Francisco, and many other delicious foodie moments.

I had doubts going into this trip.  It seemed like there was so much potential for things to go wrong.  It was our first camping trip as a family and we were doing it 700 miles from home with equipment and supplies we had just purchased and never tested.  We were going to a destination and actually a region I had not even known existed for most of my life.  But it turned out to be a fantastic experience and I loved every minute.  We are already talking about when to go again next year.