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.

 

I am about halfway up the long Spooner mountain climb at Lake Tahoe, only 15 miles from the finish line

Century Ride in Lake Tahoe

Life is definitely different this summer, than it was last summer.  It’s hard to say whether or not things are back to normal, because I don’t really know what normal means.  It’s been so many years since I’ve had a predictable routine, I don’t even know if I would recognize normal if I found it preserved in the back of the fridge.  Between the unknown day-to-day of cancer treatment, the move from Tampa to Atlanta, the financial losses in our business and then an unexpected return to profitability for the business, watching Dominic change from a little baby into a handsome and smart little boy, Angela’s transition from one career to another and all the other surprises of the past 3-4 years, I don’t expect similarity from one month to another, let alone one year to another.

Life has been busy, but in a good way.  Whereas last summer was marked over and over by managing exhaustion, nausea and pain, this one has simply been busy with work, life and play.   Blog writing has not been at the top of my priority list.  Hey, I heard that “no shit?” comment.  Calm down, I can explain…sort of.  Everybody is busy, but I feel like I keep particularly busy, and even by my own standards, the past month has been dizzying.

The month that has passed since my last entry was also unfortunately marked, repeatedly, by death.  Early in May, I was saddened to read about the passing

Jack Williamson

Jack Williamson, 2001 - 2011

of a fellow young adult cancer blogger from Boston.  Her name was Sarah Feather and she was an excellent writer, a mom and we even had the same birthday.  Her Ovarian Cancer finally defeated her body.  Then, about two weeks later, our little friend with the big smile, Jack Williamson took flight to begin his next great journey.  His body had become completely overcome by the Neuroblastoma tumor rapidly spreading up from his leg and his care team had to constantly deliver high potency medication just to keep out the most intense waves of pain.  He faced his final week with bravery and a pure heart.  Angela went to visit him about 4 days before he died and she says he already looked like he had found peace

And finally, on June 2, Angela and I made the incredibly painful decision to put our beloved Ernie “the big dog” Bear to sleep.  Ernie was a rescue dog, who Angela adopted as a full grown adult dog after asking the animal shelter to simply give her the next dog in line to be euthanized.  That was his first brush with near death.  The night of our first date, Angela went home afterward and let him out for his nightly routine when he was attacked by a flock of geese (she suspects geese…there were no witnesses, and no arrests were ever made) and returned to her apartment hours later, bloody, beaten and caked in mud.  He bore scars and injuries from that attack for the rest of his life.  And then in 2005, he was bitten on the nose by a rattlesnake in our backyard in Florida.  Thanks to immediate care (made possible by Angela’s daredevil drive to the vet’s office which involved bypassing a line of stopped cars at an intersection and an illegal left turn through a red light!), Ernie lived through that experience as well.  The fact that Ernie had persevered through so many challenges made it especially difficult for us to decide he should be felled by something as sneaky and silent as a needle and syringe.

Ernie Bear

Ernie Bear, 1995 - 2011

And even after the vet arrived at the house and was ready to get started, we needed to discuss it again, and convince ourselves and each other, again, that we were doing the right thing.  Ernie had lost most strength and stability in his rear hips and fell to the ground several times per day.  He also had lost his hearing and that caused him to be startled by almost everything around him.  And finally, he had become forgetful and incontinent.  We realized that despite his strength in previous years, Ernie’s body was failing and would not get any better.  His future, if we cancelled our plans that day would be more pain, more fear, more confusion, and that is no way for a good dog to live.  I don’t think we cried through the entirety of my 2 year cancer experience, as much as we did that afternoon holding Ernie while he drifted away from us forever.

We were somewhat rushed into the decision to put Ernie down, because the next day, we would be leaving town for 8 days.  We knew the end was near for him and did not want the pressure of worrying about his fragile condition while we were so far away.  That trip, as I have written about so much here, was for my century ride in Lake Tahoe.  The training and fundraising all came to a head on Sunday morning June 5.

The ride itself is called America’s Most Beautiful Bike Ride, and I had entered the event as a member of the Georgia Chapter of the Leukemia & Lymphoma Society’s Team in Training Cycling Team.  All week long, I kept looking at the extended forecast and hoping that the weatherman, the computer, the satellites, the DooWop Triple Action Handy Dandy Weather Tracker, or whatever the hell it’s called in Lake Tahoe was just wrong about Sunday.  Sadly, none  of those sources were wrong.  The gloom and doom they predicted from 10 days out was spot on accurate.  We gathered at the start area, mostly in the dark around 6AM under raining skies, wet roads and 45 degree air.  I was dressed in four layers of clothing, two pairs of gloves and a bubble of pure insanity.

I don’t know why, but I did not sleep much the night before the ride.  It was strange, I took things easy all day Saturday, prepared my bike, bought a few extra supplies to keep my head warm and my feet dry (neither worked).  I attended the inspiration dinner where it was exciting to see them recognize the relatively small handful of cancer survivors among the thousands of riders and even call each of us out by name.  I ended the night helping Dominic play a few of the worst video games and crappiest skee ball machines ever conjured to take money from children, and then we went to bed nice and early.  Maybe the problem was that I could hear the sheets of rain pounding the sides of the hotel and knew that I would be outside in that very rain long before the sun came up.

After snapping a few photo’s in the lobby, all the members of the Georgia TNT summer cycle team clicked into our pedals and set out over the wet pre-dawn asphalt to the starting area.  Our coach asked me to lead our team out of the start area and to ride at the front of the pack for the first 9 miles.  I rode alongside two other teammates riding a tandem in honor of Warren Bruno, the other survivor on our team, who had relapsed just a few weeks before the event and had to stay home to receive chemotherapy treatment.

It was cold and wet, and our feet were soaked within 3 miles, then numb, and I mean completely, cannot feel a thing, numb by around the 15th mile.  We rode in on and off rain, on wet blacktop until about mile 40, when the sun poked out a little as we were approaching the town of Truckee.  We had a lengthy break in Truckee, where lots of people took off their shoes to wring out their socks and walk barefoot in the parking lot trying to dry their soggy wrinkled feet.

On the extremely rare occasion that I need to be out of bed before 5AM (and this was one of them), I don’t expect great thoughts or brilliant insight to be part of the experience.  And on this morning, I actually stunned myself with intelligence by grabbing an extra pair of socks and stuffing them in a zip lock bag before clomping off to the lobby in my bike shoes and 4 layers of synthetic blend top layers.  While dozens of others in Truckee were wringing the rain water out of their socks, I simply fetched that zip lock bag from my back pocket, and slid on clean, warm and dry fresh socks.

Dan and Val before the ride

Taking our team photo's in the lobby at 5:30 AM before the bike ride. This is Valerie.

The sunny weather was just a tease though and shortly after leaving Truckee, it started raining in sheets and bucketfuls.  That was when I got a flat tire.  We had been riding a slow but steady incline for several miles and the rain had already rinsed away the happiness that dry socks had brought me.  I was also starting to think about how hungry I was, but also how the lunch station was still around 20 miles away.  So I was feeling pretty crummy, and the flat really depressed my motivation.  Fortunately, Mike was right there to help out and get me rolling again.  He insisted that I catch my breath and rest while he worked on the tire.  That stop made a difference and I rode better for some time after that.

Rain kept coming and going, but by 1PM, we had cleared away from the western half of the lake where most of the weather problems seemed to be stuck, and we rode in clear air the rest of the time, albeit with cold, wet clothing and shoes.  At around mile 70, I started to notice a little uncomfortable sensation above my right knee, right where the quad muscles start to connect to the knee parts.  A few miles later, that feeling had crept lower and seemed to create a film over the front of my knee cap that shot a painful little dart inward toward my knee with each downstroke of the pedal.  By mile 83, I was well on my way up the 8 mile climb of Spooner Mountain and my knee was screaming at me to go do something else, anything else, each time I pressed down on the pedal.

I am telling this story almost two weeks after completing the ride, and as with any traumatic experience, time has already started to weaken the memory of how painful that mountain was at the end of the ride.  When people ask me today if I enjoyed the ride, I say yes.  That afternoon, I would have said no.  If you had asked me while I was pedaling up that mountain, I probably would have shot you a gaping mouth look of disbelief and then pedaled away without a word thinking you were an idiot.  That mountain took away my energy, my pride and my breath.  I was riding so slowly, that if a two legged, blind possum had walked out onto the road that afternoon, it probably could have passed me.

But, I was not going to quit.  That is what this ride was about.  It was not a race, and I never expected to do it with speed or grace.  My goal was to complete the task and get to the end.  For two years, throwing punches back and forth with cancer, it was never pretty…it’s never pretty for anyone.  Cancer takes away everything it can get it’s hands on.  It takes away your appearance through weight loss, swollen limbs, lost hair and scars.  It takes away life functions, confidence, dreams, future plans, money and hope.  It does not care when or who it strikes, or how inconvenient the timing is.  And we don’t defeat it without coming out beat up, bloodied and broken on the other side.

I have survived my experience with cancer, but I am not the same person I was before.  I have lost time, I have lost the chance to have another child, I nearly lost my home and my body is weaker and more prone to disease than it was before.

At approximately mile 81, as I was really getting into the grind of Spooner Mountain.  To my right, beyond the slowly passing guard rail, the mountain dropped steeply away to the bank of Lake Tahoe below, and the horizon was the famous jagged, snow covered mountain range on the west side of the lake.  I

Dominic cheering for the TNT bike riders in Lake Tahoe

could clearly see that side of the lake was still buried in the storm we had ridden through in the morning.  Suddenly, around a gentle curve in the road, there was a little red car stopped on the shoulder in front of me.  On the trunk of the car sat a little boy I recognized, with a pretty smiling lady right next to him, and they were cheering for me.  They held signs that said, “Go Daddy” and they were waving and cheering for me.

I took a long break at that point and savored the moment.  Despite the evidence of bike ride casualties passing by in multiple SAG vans loaded with bikes and people, I knew I would finish that ride even if it took the rest of the day.  I knew that I had persevered through the suffering of chemotherapy and cancer treatment by just taking it one minute and one day at a time, and I knew I could get over that mountain.  As added incentive, I knew that if I reached the top of that mountain which was just over 7,000 feet and located at approximately mile 87, I would be descending to an elevation of around 6,000  feet at the finish line just 13 miles away.  What I am saying is that it would mostly be downhill.

Mike and I re-grouped at the top of the mountain and we also joined together with a handful of my other team members from Georgia including Val, Cindy, Libby and Charlotte and we all rode most of the rest of the ride together.  At sometime close to 4PM, more than 9 hours after leading the entire team out of the starting area, Mike, Val, Libby and I rode together into a massive cheering crowd, high fiving friends, family and team members along the way and finally unclipped from our bikes for the last time that day.

Several times throughout the day, I had imagined and envisioned the finish line and what it was going to feel like to cross that line.  In my imagination, it was a powerful and moving experience with a rush of emotion and feeling of accomplishment.  When it finally happened though, I was so relieved to have made it, I barely thought about what it all meant and instead just joined the Georgia team in welcoming the rest of our riders into the finish corral.

I can say now, after having time to recover and reflect, that I did enjoy the ride, and it was sweet satisfaction to know I had made up my mind to complete a daunting physical task, and saw it through to the end, despite the history of disease in my body.

Will I do it again?  Hmm, that is undecided right now.  I would do the event again, but I did not care much for the

At the finish area with Mike and my little buddy

time commitment of the weeks and months of training.  It took a lot of time away from home, and I am not comfortable with that, especially after all the time I have spent away from Angela and Dominic fighting the cancer.  So, for now, I am not deciding anything for sure.  Maybe I will be back again, or maybe this was a one time effort to prove something to myself and to support the organization that helped me beat this ugly ugly disease.  Stay tuned and I will let you know.

There is so much more to write about this trip, but I feel like this is already to long.  As a wrap up I need to thank some very important people.  First of all, thank you to the dozens of donors who contributed everywhere from $5 to several hundreds of dollars to the Leukemia & Lymphoma Society in my name and in the name of my riding partner, Mike Loria.  Between the two of us, we raised $7,269.50 that is already funding research into giving blood cancer victims a better chance at a long and healthy life.  On that note, I want to thank Mike for joining me on this ride.  He is a busy guy and had to take lots of time away from his business, Re-Source Partners, in Michigan to train, fundraise and answer my endless questions about how to prepare for an endurance event.

Next up I need to thank the home team, my wife Angela and my son Dominic for putting up with my absence every single Saturday morning since January, and most Thursday nights as I pedaled and trained to get in shape for this event.  Angela took on an unfair share of solo parenting for the better part of most Saturday’s and sacrificed some of her own fun weekend activities to make this possible.  And she was there with her trademark tough love, to give me the pep talk I needed when the going got rough.

To Ernie, my big dog, I am sorry we had to make the decision to put you down before leaving for this trip.  I truly hope that you are freed from those old bones, broken muscles and giant tumor and that you are in some magical dog park where there is a fence line that stretches to infinity filled with every kind of fascinating smell.  I know that is where you will be…nose to the ground and following the scent.

And last but not least, to my team members and coaches at Team in Training.  This was my first endurance event and as a very recent cancer survivor, my body was not prepared for the early days of training.  I am sure the coaches had doubts about my abilities when they would see me huffing and panting on even small hills while the rest of the team rode to the top.  Julian, Kelly, Graham and Neil were good about encouraging me nonetheless and making sure I had the motivation I needed to keep going.

For more photo’s from the bike ride, please visit my Lake Tahoe Century Ride Picasa album.

 

Remission

I have been dreaming of writing this post since January 2009, and I am actually writing it on June 30, 2009 and storing it in my drafts folder until I can officially post it.  I need to do this to remind myself that it is coming and I will not always be a cancer patient.  I will fill in the details later, but the fact is that I know this post is coming.
 

May 4, 2011 – The day has finally come to publish this entry.  This morning, my doctor opened the door to the exam room where Angela and I were waiting and before she was even all the way in the room she raised up a handful of papers and said, “I’ll cut right to the chase, it’s all good news.”  I am truly a cancer survivor.

My tumor has continued to shrink and display less and less uptake activity indicating that since the stem cell transplant, 8 months ago, there has been absolutely no growth or advancement of cancer anywhere in my body and the mass of cells that once dominated the space behind my sternum is continuing to shrink and fade away.

Naturally, I am relieved and happy.  I am most happy for my family because they all deserve to live a normal life.  We have been so shaped and guided the past two years by the necessity to take care of MY needs, that I am grateful to finally and officially arrive in a place where it is not ALL about me.  That was a lot of pressure for someone who does not like or need, lots of attention.

We hugged, we laughed a little and then we  agreed to meet again in 6 months for another follow up PET Scan.  That will be a part of what I do from now on, or probably at least until I get 5 years out past the transplant.   I commented to Angela as we walked down the front corridor at Winship Cancer Institute, “This is the first time I’ve walked out of here smiling.”

Ever the prepared planner, Angela pulled the car off into a little park area shortly after we got off the hospital grounds and told me to get out of the car.  From the back of the car, she produced a little split of champagne and two flutes.  We hugged again and toasted the outcome that we have known would come.  This is a great day.

As I mentioned at the top of this entry, I created this post, titled, “Remission” way back in June 2009.  It was at the point where I had reached the end of what was supposed to be my first 12 doses of chemotherapy, but at the last week or two, found out that my doctor wanted to do four more infusions of ABVD chemotherapy because my Hodgkin’s Lymphoma was not going away.  I was depressed at the thought of more chemo, and needed to affirm in my mind that there was a reason and a goal behind all the misery.   I never published it of course because I never achieved the elusive state of remission until now.  But from time to time, I did re-visit the post, deep down in the chronological list of blog entries and added a few thoughts to it.  Those thoughts are below.  For now, I am taking the rest of the day off!

 

December 2, 2010 – 90 days have passed since the transplant. That means I am halfway to the point where I am supposed to be able to do all the things normal people can do…although I feel that I can do a lot of those things now. These three months have not been the cloistered miserable lockdown period I had been expecting, but they have not been easy. Yes, I have been able to get back to work. Yes, I look like a normal person (with very very short hair). But I have been plagued by a mystery lung affliction for nearly two months. Hopefully that is coming to an end. Two weeks from today I will get my PET scan to determine if the transplant worked. It had to. I cannot put my family through this again.

June 28, 2010 – Today is my Dad’s birthday, and it was nice to be able to celebrate with him for the second year in a row.  It was also my day to meet with Dr. Langston to go over my evaluation tests from last week.  Even though the PET scan showed that the tumor has reduced in size, she was not pleased with the size of the reduction.  She had been hoping for a more dramatic change in size than the 1 cm reduction that actualized.  Once again, this is another checkpoint that has delivered less than ideal results.  I am still focused on the end result and determined to win, but it is frustrating getting bad news.  I felt the need to check in on this post and remind myself that remission is coming and I will get there.

May 12, 2010 – Going to have to wait on this one. My cancer is back.

Well, What’s It Going To Be?

Yesterday, well after dark, we returned from an amazing getaway.  Dominic, Angela and I spent three days in the Florida Keys, preceded by 24 hours in Miami…which was only so-so.  Have you ever been to the Keys?  And I don’t mean staggering around Key West with a frozen drink until it’s time to get back on the cruise ship.  I still believe the best way to get there is to drive and watch the dark water slip away behind while embracing the zaniness and whimsy of whatever lies ahead.  I told Angela as we were leaving that there is almost no need to ever visit the Caribbean with this gem (or string of gems) lying just south of Miami.  Everything about it is gorgeous.

That was yesterday.  Today is a day of quick catching up and getting family and home life back in gear, and then tomorrow morning I report to Emory for a PET scan.  This will be scan number 2 since the transplant.  As most readers of this blog know, I did not get the results I was hoping for at my last scan in December.  After all the treatment and the transplant, the scan still showed evidence of live cancer brewing in my chest.   As always, I am hoping for the best.  And once again, I feel fantastic.  I had a little morning cough that dragged on for about two weeks making me a little nervous each morning when it would start up, but even that has subsided.  Right now, I don’t feel the hint of even one symptom.  I don’t itch anywhere, I am not coughing, I am breathing well, I sleep through the night.  Nothing to fear right.  Nothing but my mind at this point.  It still looms heavily over me that I have never returned a good PET scan.  Not once.  I’ve never used the R word in reference to my cancer.

I will get the results next Wednesday at 2:00 PM.  That seems like an awfully long time to wait.

Jack Williamson

Update on Jack – SpaceCampforJack.com

Jack Williamson

Jack and Moo Moo

I have received a few inquiries from those of you who were moved by Jack’s story last month, wanting to know what has happened since then.  Jack had a very busy month in March. Around the middle of the month, he and his mom completed one of the Dreams by jumping out of an airplane…with skydiving gear of course.  Then he got baptized (this photo is from the baptism day).  He also stopped by at our house for an afternoon to play with Dominic and all his buddies from up and down our street.  Angela asked, and  the Johns Creek Fire Department agreed, to bring their huge platform truck to our house and gave Jack a special tour of the truck and let him operate some of the equipment.

Then, with a generous donation from Atlanta Braves pitcher Tim Hudson, Jack and his whole family went to New York City because one of the Dreams was to visit the worlds biggest toy store.  He paid a visit to the Toys R Us and the FAO Schwartz in New York, along with visiting many of the other attractions in the city.

Throughout this time, we kept trying to figure out when Spacecamp was going to happen, and as March came to an end, they were looking at the first full week of April (the one we are in now), but unfortunately cancer had a different plan.  Jack started to experience a lot of swelling in the leg where his tumor has been growing and had to be admitted to the hospital for a few days.  Without going into all the details, the short version is that the tumors created by his Neuroblastoma are aggressive and growing fast, and his little body has been so weakened by the years of chemotherapy toxins that he is suffering physical injuries just from the pressure of the tumor pushing against bones, joints, muscles and blood vessels.

Sadly, SpaceCamp is one Dream that is not going to happen for Jack.  That makes me sad because it shows that all the love, all of Jack’s optimism, all the money, all the determination, and all the willingness of everyone involved in this effort was not enough to overcome the march of cancer cells.  As if it wasn’t cruel enough that the disease will steal his life, it has claimed some of his Dreams too.

His mom has asked me to share a story with you though about how the money you donated has helped Jack.  He loves to watch nature videos, but the TV in their living has been broken and could not display the videos, so whenever he wanted to watch shows about his whales or birds, he had to go into his bedroom.  But that created a conundrum for him because he felt isolated and alone in his room.  So, when his mom realized they could not go to SpaceCamp, she invested in a new TV for the living room and set Jack up with a spot on the couch for him, Moo Moo and their dog so he could stay close to the family, and watch his videos.  He has been on morphine most of the day for the past week or so to control the pain caused by that giant tumor pressing against his joints and muscles, so he has spent a lot of time resting.

His mom was also able to negotiate his cooperation with painful and uncomfortable hospital treatments by offering toy shopping.  Apparently, he set the toy denominations and decided every time something happened that he didn’t like, it would cost her 5 toys.  She tells me that by the time they left the hospital, he was glowing because he was “charging” her 60 toys for everything that happened.  They went to straight to Toys R Us and she used some of the money from our fundraiser to fulfill 11 of the “debts.”  Typical Jack though, he made sure that some of the toys he picked out were for his little sister.

Thank you again to everyone who contributed to his Dreams.  Your money is not being wasted and although Jack may never know what you did for him, you have helped to make this part of his life a little easier.  Thank you.

Sometimes you need a little help, other times you give a little help.

Support Groups…Don’t Roll Your Eyes, Read This

Sometimes you need a little help, other times you give a little help.

The subject I want to write about tonight is cancer support groups.  For every single one of you that is just about to stop reading here and move on to Facebook or YouTube…STOP.  I am getting to something important and I would really appreciate your attention.  This won’t be a long post, so stick with me…Please.  In the early part of my diagnosis, when the subject was brought up, I used to ask myself, Why should I join a cancer support group?  I just wanted to do my treatment and get it over with. The idea of a roomful of bald, weepy strangers was about as attractive as having my port accessed by a nervous, first year, night shift nurse.  But time went on and I matured as a cancer patient.  And today, I think cancer support groups, or support groups for any traumatic and stressful experience are a great idea.

Throughout my journey, almost every survivor I have talked to, and especially young adult cancer victims, have almost universally dismissed the concept of a support group as, “not for them,” or “not my style.”  That is of course with the exception of the fine folks who belong to the cancer support group in Atlanta that I belong to, Young Adult Cancer Survivors of Atlanta (YACS) and their fearless leader Jenn Potter.  To all those who simply dismiss it, and especially to any of you who KNOW someone recently diagnosed, in treatment, or adjusting to the “new normal” after cancer treatment, please re-consider a support group.

I suspect that not all cancer support groups are as much fun as a YACS dinner where you are just as likely to hear about someones anxiety over their upcoming PET scan, as you are to wind up discussing the complete hilarity that lives on the website www.damnyouautocorrect.com. Seriously, check that website when you have freedom to laugh out loud.  However, the people at support groups are not just sitting around and listening to how bad others have it.  I think many people make a false connection between being a member of a support group, and admitting there is something wrong with themselves.

A support group is not just a place to discuss problems.  It is a place to find people you can relate to on a topic that the rest of your social circle may have no experience dealing with.  My Dad was a firefighter for 37 years and we were recently talking about the unexpected similarities between me talking to other cancer victims, and him talking to other firefighters.  While your spouse, parents, friends, relatives, neighbors and co-workers want the best for you, want to show their support and want to be there for you, they cannot understand what you are feeling without actually having done it themselves.  My Dad agreed it was the same with firefighters.  He could share his stories with me, my sister or our Mom, but we would never “get it” the way another firefighter who has been inside the smoke and the darkness of a burning building will get it.  He is retired now (another life changing experience) and goes to breakfast once a month with a big group of retired firefighters to catch up with his friends.  Please, if any of you see my Dad, don’t tell him that his breakfast group could be considered a support group, he probably wouldn’t like that.  Plus, they just hired my company to coordinate lodging for their annual trip to Las Vegas, so I need him to stay with the group as my carefully placed inside salesman!  Just kidding…thanks for the referral Dad.  Did you notice the word I used a few lines back…friends?  With a little luck, the people in your support group become your friends and the potential is there to form really solid relationships because of the intensity of the shared experience.

I believe any person with a unique, unusual or challenging circumstance would find comfort in relating to those in the same or similar circumstances.  To those of you who have been there, you know what I am talking about.  Nobody in a support group is going to give you that look and the all to familiar question, “So, how ARE you?”  And that is why I feel anyone who has been through an exceptionally stressful experience should seek out a group of peers.  It helps to know you are not alone and that there are people who understand exactly what you are going through.

And finally, if you have dealt with your situation very well and feel that you have survived and gotten to the other side of adversity with no real scars, and you think you don’t need any additional encouragement, then you REALLY should join a support group.  There are people who need you.  There are people who received news of their diagnosis a few days ago and they are lying in bed tonight, eyes wide open wondering, wondering…  They are full of questions, and have no answers.  They don’t know what to expect, they are scared of what will become of them, their family, their job.  They need hope.  They need someone like you to tell them what it is going to be like, or at least to tell them what it was like for you.  They need to hear the human side of it.  Anyway, I could go on with rhetorics, but I won’t…I did promise this would be short.

If I have convinced you to look into a support group or a peer to peer group, or to encourage your friends brother who was recently diagnosed, the next question will be, where do I start?  I would start with Livestrong.  The page at this address is a resource guide organized by category and states that can connect you with innumerable resources for connecting and finding humanity in this crazy cancer world. http://www.livestrong.org/Get-Help/Find-More-Resources.  If you don’t find what you want in there, send me an email and I will help you find a group that suits you.  Have a nice night.

CUREganizer Logo

And The Winner Is….

The winner of the “Guess How Much My Cancer Treatment Cost” sweepstakes is…close your eyes for 30 seconds and imagine you can hear the dramatic music of a reality TV show…Joe Paybarah of San Francisco, California for his guess of $350,452.21.  The actual invoices for 2010 added up to $355,368.14.  I was very surprised to see one of the guesses come that close (only $4,915.93 difference) to the actual total, considering that the next closest guess was $490,000.  As the winner of the contest, Joe will receive a full scholarship to pursue a new career in medical billing and coding, something that to this point in his life has only been a dream and a hobby.

Kevin Priger from right here in Atlanta takes the prize for winning both of the other two categories.  The first was for offering up the closest guess to the single most expensive day of treatment, even though his guess of $35,000 was still a long way from the $96,652.60 billed on the day of my transplant.  And he won again for his guess that hospital accepted actual payments of $330,000.00, when in reality they took approximately $122K off the bill to accept $233,149.08.  Congratulations Kevin, let me know if you would like to join Joe as he goes off to study the fascinating world of medical bill coding.

CUREganizer Logo

Another thank you is owed to the NavigatingCancer.com website for awarding my blog with their Inspirational Cancer Blog Award.  You can see my new badge displayed over on the right sidebar.  Their site is a new service that looks like it could potentially be an alternative or…competitor…to my own CUREganizer project.  Oh yes, that’s right…the CUREganizer is still alive.  I am the first to admit that it is way behind schedule.  In fact, I remember posting on this blog last winter with the proud news that the workbook would be launched sometime in March 2010.  I may not operate with the efficiency of the Swiss rail system, but I am still plugging away at it.  I now realize that my estimate of last March was really premature anyway.  There was far more work left at that point than I realized, but I have made great strides.  A logo has been finalized, and in January I hired a designer who is tasked with creating the layout of each page and prepping those files for print.  He is currently about to begin work on the fourth and hopefully final revision of those pages.

A few weeks ago, I wrote about our little friend Jack Williamson, who is 9 years old and has extremely advanced and metastasized Neuroblastoma.  He wants to go to SpaceCamp as part of his Mom’s Operation Dream to fulfull his biggest wishes, as she has been advised by their doctor to start making hospice plans for Jack.  I was impressed with how Jack keeps his spirits up while facing the worst that the Dirty Bastard can dish out, so I created a little website to get his story out and try to raise the money they need to go to SpaceCamp.  Readers of this blog joined dozens of other generous people and donated to the cause, or supported it by spreading his story through their own social networks.  In a span of 48 hours, we raised $2,575.00 for Jack and his Mom.  We got a chance to visit with them on Sunday and learned that the first date they had picked out for Jack came and went to quickly.  The second opportunity was for this week, but they already had a conflict, because they are out of town fulfilling another of Jack’s dreams.  But they are still working on selecting a few days in early April to get to Huntsville and go to SpaceCamp.  Just today I received an amazing email from a complete stranger who has been working on our behalf to convince SpaceCamp managers to accept a lower fee in light of Jack’s situation.  So, while they may not use all the money on SpaceCamp, I assure you those contributions will be used to fulfill other dreams.  The dream being fulfilled this week is that Jack wanted to visit the worlds biggest toy store in New York City.  That dream was made possible by Atlanta Braves pitcher Tim Hudson through the Hudson Family Foundation.

Jack and JCFD opening the fire hydrant in front of our house

When we learned, with kind of short notice, on Sunday, that Jack was coming for a visit that afternoon, Angela wanted to do something special for him.  So, she ran up to the local Johns Creek firehouse and explained the situation.  Those guys dropped everything and said as long as Atlanta didn’t burn to the ground again that afternoon, they would be there for Jack.  True to their word, Johns Creek ladder truck #63 pulled into our cul de sac promptly at 3:30 and Jack got the royal treatment from those firefighters.  One of them had even just had his head shaved the weekend prior in a children’s cancer support event, so he took off his hat and showed Jack his head.  It seems that every encounter we have with the guys from this fire station is better than the last.

Jack and the firefighters from JCFD Station #3

It just so happened that two days later, I had the opportunity to meet the mayor of Johns Creek, and that is exactly what I told him.  On Tuesday morning, I got on my bike and rode, with about 3,000 other bicyclists, from historic Roswell, all the way through the cities of Sandy Springs, Dunwoody, City of Atlanta neighborhoods Buckhead and Midtown, and right into downtown to the front steps of the capitol building.  We were all there for an event called Georgia Rides to the Capitol.  The point was to have a large showing of cyclists to encourage the approval of a bill that would require cars to give cyclists a 3 foot passing margin at all times.  There were speeches from numerous metro Atlanta mayors, and finally Johns Creek mayor Mike Bodker had the job of introducing the governor to the podium.  After all the speeches were done, I clomped up the Capitol steps in my funny looking bike shoes with the clunky clip-in brackets on the bottom, and clad in tight shorts and glow in the dark orange jersey, with my padded palm fingerless gloves still on my hands, I introduced myself, shook his hand and told him that story about Jack and the firefighters.  He was happy they did it, but not surprised.  He told me that the police and fire departments have always been encouraged to get involve with the residents every chance they can.

I was really glad I did that ride on Tuesday.  I was undecided on whether or not to go, up until 10pm the night prior, but finally committed and that was a good decision.  The ride was fully escorted by a collection of police motorcycles from each city we passed through and they did a great job of keeping traffic stopped at every single intersection on the route (see some photos from the AJC here).   I even rode home when it was over making for another 35 mile day.  That’s right, I said another 35 mile day.  I have been going out to my Team in Training rides every Saturday and this past weekend, and the previous weekend we rode 35 miles each time.  My cold has finally passed, so I hung my lungs over the deck rail one day and they got nice and dried out…no more of that gooey crap I’d been coughing up for four weeks.  The training is starting to pay off and I am feeling better on hills and picking up the pace a little more.  I will ride 20 miles with another group on Thursday night, and then our official training ride on Saturday will be 40 miles.  That will total 95 miles this week when it is all done.  Sounds like a lot right…not when you consider that our goal is to ride 100 miles in one freaking day.

Look, I have a lot more to say about the bike training, riding on the road and the fundraising experience, but this post has gotten pretty long and as my friend Mike said in response to learning I had played hooky all of Tuesday morning to ride to the capitol building, “That’s nice but…Some of us have to go to our job today!”  He may have used some additional adjectives in there, so that is not an exact quote.  So, go ahead and get back to work or whatever you were doing 5 minutes ago.  Or, if you don’t want to do that, go to my Team in Training website and make a donation, so I can keep on riding with the team.  Have a great day.

Jack and his newly renovated Moojo wheelchair

Updates and Raising Money for my buddy Jack

Jack and his newly renovated Moojo wheelchair

I am back to the point where I don’t have regularly changing news about my health to keep this blog updated.  But, I don’t want to give it up.  Many of you…MANY…have stressed to me how much you like to read my writings and that makes me really happy, because I love to write.  I have always enjoyed it, and would love to make a pseudo career out of writing, but I have been at a loss as to what topics to write about.  I will probably start stretching out and doing some writing exercises with a few interesting stories from my past.  Toward the goal of making a career out of it, I recently made the acquaintance of the owner and publisher of a new newspaper in the north Atlanta metro area and asked him if I could write a travel column for his publication.  He has agreed to let me do that.  So, as soon as I get around to writing the first piece, and he publishes it, I guess I will be an official travel writer.  Yay!

I actually have a lot going on right now and a lot I want to share, but I have been so busy the past three weeks, I simply have not had the energy at the end of the day to write about these adventures.  This goes all the way back to the cruise on February 10.  Did you know we went on a cruise?  It was nutty…Wednesday morning was a regular day until around noon, then it became a scramble because we found out we would all be leaving on a ship the next morning.  More about that in another post.

And if you think that one sounds like a good story, I am having an ultra, super high intensity experience this week.  Again, no details now, but I will tell the story later.  And of course, I know I owe the four or five people who took guesses at my medical expenses some answers.  Truth is, I don’t even know the final answer yet.  A few more bills have come in the mail since I posted that and I need to add those to the master list.

I have also undertaken a project to help a little friend in need.  His name is Jack Williamson and he is a 9 year old boy with advanced high risk Neuroblastoma.  He lives here in metro Atlanta and his mom is a school teacher.  My experience has been a cake walk compared to Jack’s.  He has undergone not one, but two stem cell transplants, and  lots of other painful procedures.  He has also been fighting his war on cancer since he was only 2 years old.  His cancer has recently progressed throughout his lymphatic system, into his bone marrow and a new solid tumor discovered in his leg.  His doctors cannot perform another stem cell transplant because it WOULD kill him.  Although they are attempting a few experimental treatments, his Mom has left her job (and now has no income), to commit all of her minutes and hours to spending with Jack, and instituted what she is calling Operation Dream, to fulfill as many of Jack’s dreams as possible.

One of those dreams is to go to SpaceCamp in Huntsville, Alabama.  Over the past two weeks, we have been helping Jack’s mom figure out the details, and the management team at SpaceCamp has agreed to make arrangements to accommodate Jack’s dream.    But we need to raise the money to help her pay for it.  My role has been to assemble a website to tell this story and collect money for Jack, and that website is ready at www.spacecampforjack.com.  

We are asking for a lot of small donations.  We are asking for you to surrender $5.00 or $10.00 (which you will never even notice is gone).   However, if you feel the need to donate more…by all means please do so.

Guest Blogging for Team in Training

The Team in Training Georgia Chapter asked me to write a guest blog post for them about my cancer experience and why I decided to join Team in Training.  They posted the article here http://teamintrainingga.blogspot.com/

The full article is also republished below.

Surviving and Thriving by Dan Gennari

It was March 16, 2010, and I was panting like a German Shepherd on a hot July day, but I was standing straight up, at the top of a snow covered mountain in Colorado. Approximately 6 months before, I was seated in a big recliner, a clear tube running from an IV bag into my chest port and wondering if I would ever enjoy skiing the way I always had after 16 doses of bleomycin and other toxic chemo drugs had been pumped into my veins. I had followed my two friends off the top of the chairlift as they unclipped their skis and began hiking to the peak at around 13,000 feet. The climb took about 20 minutes but felt like hours to me. After pausing a few minutes to catch my breath and take a few pictures of the moment, we all clipped back into our bindings and plowed into the powder of the open bowl, and then the glade of trees. It was a liberating experience for me.

That was when I knew, or thought I knew that I could overcome the evils of cancer and continue to live a thriving life. I knew that despite the things I had lost and the pain I had suffered, Hodgkins Lymphoma was only a part of my life and that I still had unlimited potential to succeed in pursuing my dreams. I also knew then, that it was time I responded to one of those numerous purple brochures and postcards hitting my mailbox and trying to recruit me for Team In Training. That day on the mountain renewed my confidence in myself and my body and I was ready to take on the world. Before I would get that chance though, I would have to take on cancer once again.

After only an eight month break, scans revealed that my mediastinal mass was growing aggressively, and my doctor recommended beginning salvage treatment in preparation of a stem cell transplant. I was devastated that I would not get to train for the century ride, because I think I wanted it for myself, as much as I wanted to help the Society. I wanted to validate the feeling of health and recovery that I felt on the mountain in March. I had already started my fundraising, and decided I would go ride with the TNT team on their first cycling ride of the summer, even though I knew it would be my only ride with them.

Although my memory of that afternoon high in the Rockies is as vivid as if it happened yesterday, the summer that followed is a fuzzy patchwork of recollected moments and feelings. I was in and out of the hospital several times, and visited the clinic almost daily from June through August. I finally completed my stem cell transplant process in mid September and checked out of the hospital for the last time.

I got through my first 100 days post transplant with several colds and a brush with pneumonia, and I am starting to feel good again. I started to ride my bike at the tail end of December and joined the TNT Georgia Chapter once again and will be training for the America’s Most Beautiful Bicycle Ride in Lake Tahoe this June.

Throughout my 2 year cancer experience, I have received an incredible outpouring of goodwill from friends, colleagues, family, neighbors and even strangers. So, with the fundraising minimums of TNT looming, I am hesitant to once again ask for help from those who have already done so much for me. Instead, I have partnered with The Ski Channel, to premier their documentary, “The Story” in Alpharetta (an Atlanta suburb).

The film will be shown on February 17, at Studio Movie Grill and tickets cost $25.00 per person. The $25.00 ticket gets you admission to the movie, food and drinks, and benefits The Leukemia & Lymphoma Society. If you or someone you know are interested in supporting my fundraising for the Society, please link to the ticket sales portal through my blog site,http://dev.dangennari.com/. If you cannot attend the film, it is also possible to make a direct TNT donation through that website link.

Dan Gennari is riding with TNT for the 2011 America’s Most Beautiful Bike Ride at Lake Tahoe, NV this coming June. Dan, you inspire us and thank you for sharing your story! TNT’ers, please support “The Story” movie screening on February 17th.