My Trip Deep in the Heart of Basal Cell, Part One

I was blessed to be invited to a conference hosted by BCCNS Life Support Network. There was to be an intimate group of about 30 there.  I had yet to spend any length of time with someone who has dealt with this condition longer than I so I was really excited.  I was pumped for two plus days of back to back activities and speakers.

I flew in Thursday, Dec. 5. There were several of us due in at the about the same time. The plan was to meet and share a taxis to the hotel in downtown Ft. Worth. Before I even left the airport in St. Louis weather on the east coast had eliminated a research team from being able to join us. On the flight in I was seated next to a copilot flying in to DFW airport to begin his next 4 day rotation. He was flying out to Arizona on his first leg. I said that was awesome he would be flying away from all the weather. But alas he was to be flying back into DFW about 10 o'clock that same evening. I told him I would pray for normal conditions.  He agreed normal/boring would be great. Casual conversation came to a halt as we landed and he noticed the deicing machines going full bore. He turned to me and said, "So normal looks like it is out of the running shoot up you prayers for SAFETY". I learned more about weather and planes in the 15 minutes it took us to taxi to the gate than I had learned in the previous 45 years of flying.

Arrival at DFW brought more news of cancellations, delays and the like. I shared a taxi with Sheila and Jenny. What was normally a 40 minute drive was over an hour and a half. Once we arrived to the hotel we realized too many people had yet to arrive to have the meet and greet we had planned. Everyone agreed to meet at breakfast the next morning as planned. 

Wine and dessert at Thai Tinas

Lucky for me they had allowed my mom to meet me for the weekend. She had already checked in and was waiting in the lobby for us when we arrived. So I joined her for dinner in the Thai restaurant at the hotel. Weather lead to almost private dining and lots of conversation with the owner. Ms Tina treated us to a dessert sampler. What a way to start the weekend. My mom and I had a wonderful visit and could not wait to see what the next few days would bring.


If you are ever in downtown Ft. Worth do stay at the Embassy Suites. Sure they cost a little more. You have to figure your meal budget when you were deciding. They offer continental and made to order free breakfasts.  All rooms are suites and will sleep up to six with the queen sofa sleeper. In the evening they have a managers reception with chips, dips and other crudites. To go along with your snacks you may have all you can drink of the beverage of your choice. This includes their house wines, sodas, liquors and beers. Think about it sodas alone are $2 each on average now.

Tree outside our meeting rooms

 
The hotel was decorated for the holidays. It was very peaceful and elegant. I have used several hotels in the St. Louis area for different functions I have hosted. I will be paying a visit to our local Embassy Suites to compare apples to apples as they say.



The BCCNS Support Network hosted the event. There was abundant information available from brochures they provided to the presentations given. My mom had brought a book assuming she would not be interested in the sessions. The book went unread. For the two days of sessions we had our table covered with hand outs, pens and note books.

class in session

We learned in more detail the manifestations of the syndrome we all share. These types of sessions are priceless as BCCNS is an orphan condition.  Less than 100,000 are affected with it. We learned the latest information on the patch gene, the hedgehog inhibitors used to combat the dis function of the gene. This helped us to better understand our own genetic family. 

The guest speaker for Friday was Chaya Murali, a Genetics medical student with Baylor College of Medicine. She lead us in her program "Get It Write".  She uses this in her classes with children of all ages. We count as kids in the broad spectrum of things.  She uses writing to get people to come out of their shell. She initiates a written conversation with questions like"who do you most admire and why?" or "describe a time when you were brave".  If I remember correctly there were 10 questions over her 2 sessions. We had an allotted time to write for each question then were asked to share. I found this very insightful. These are things you might think to ask someone else going through a crisis, but neglect to ask yourself or the caregivers of people in crisis. Puts a whole different spin on things.

The hotel served a catered lunch of pastas, salad, tea and tiramisu. YUM.

After lunch we were blessed with a presentation by a young man only 18 years old. He has been dealing with the affects of the condition since he was 8. This first person story opened my eyes to several things I had not even thought of. One being this syndrome creates all sorts of emotional road blocks. This raises questions regarding how I am dealing with my fear, self esteem, anger, helplessness, etc. The second being who I have on my medical team. I have a General Practitioner, Dermatologist, Mohs Surgeon, Ocular Surgeon and Maxiofacial Surgeon. Based on conversations with several attendees regarding ways BCCNS manifests itself, I believe I need to consult an Orthopedist, Cardiologist and a Neurologist this next year. I will be discussing necessary additions with my dermatologist and surgeon over the course of the next few weeks.

Me and Mom on western night

Friday night was western night. The meal was BBQ Texas style,awesome, and fellowship with other attendees was great.  And that was just day one.

Take Away Nugget: You cannot find something until you define it..