Baltmore Maryland Spoke

September 14^th, 2010

Baltimore!

Last year we were very impressed with the University of Maryland Greenbaum cancer center, and this year we are even more impressed! Karen Warmkessel is the greatest media relations person! Last year with only 2 weeks notice, she pulled together a fantastic spoke, and this year they made it even better!

Interacting with the staff here, seeing how they truly love what they do, and love the patients. You can tell that they really care. They also see what we are doing and how we can add to the experience for their patients and facilitate our mission.

Roseanne Daugherty is a shining example of one of their staff who obviously loves what she does. She actually got into oncology nursing after meeting a cancer survivor in an exercise class. Roseanne is a triathlete and we met her last year and she made a lasting impression on us, as she does everyone she meets. Roseanne is doing the IronMan this year. Last year she did the triathelon with 140 liveStrong wristbands on her body and her bike… one for each mile traveled and with the name of a cancer patient written on each one. She greeted us once we arrived on the unit in her cycling clothes and escorted us around to the patients. We met with the patients on the bone marrow transplant unit. Met some Raven’s fans and some Steeler’s fans which started some interesting banter with our riders who were Colts and Buckener's fans…

We met a dashing 28 year old young man fighting lymphoma named Justin with a twinkle in his blue eyes that just screamed “I AM NOT MY CANCER!” . He beamed as we gave him a cap and a LiveStrong wristband.  Kathy Robinson shared with him her own fight against lymphoma 15 years ago, and how Mario LeMieux was going through his fight against lymphoma at the same time she was and how they both came out winners, and so would he. We had no doubt that he would. Not with his attitude.

Then we met Jessica, another 20 something year old survivor with a radiant smile and sparkling blue eyes. Even with her scarf and the apheresis machine pumping and clicking as it extracted her stem cells through her port. She looked like a model even if she was lying in a hospital bed, you could see the inner beauty of this young mother of a 2 and 5 year old. She had been in the hospital for what seemed like forever, but soon would be released to sleep in her own bed an d hug her kids again.

Elizabeth Saylor is the Ulman Foundation, Young Adults Patient Navigator, fully funded by the Ulman fund. They provide services and look out for the needs specific to survivors so often overlooked between the ages of 18 and 40 years of age. We were told that by this time next year there should be another Ulman foundation office in DC as well as a Patient Navigator in GW Hospital.  We would like to plan to include them in next year’s event schedule.

Another patient we met with in strict isolation, but wanted to see us anyway. In fact, we met her last year on our Spokes of Hope ride when she was in treatment. She had a little less hair than she did last year, but she still had the will and determination to fight. Her mother was in her room with her and we put on gowns and gloves in an airflow controlled unit to see her. She distinctly remembered us from last year, as we did her. She now had tufts of hair on the crest of her hairline that sat like a tiara on her head framing her face perfectly. She was charming and eloquent. We spoke about passions, and life. Strength and attitude. Our film crew cameraman came in with us, gloved and gowned and shot an interview with her.  Soft spoken, yet powerful. Dawn, I hope we see you again next year as a member of the spokes team, and not in isolation again.

We were escorted to a common area where they had prepared a reception for us. We met the Medical Director Dr. Kevin Cullin who presented the team with special running caps, and we presented him with a Spokes of Hope cap, which I must say looked quite good on him. He was delightful and engaging and you could tell was very proud, and rightly so, of his associate with the University of Maryland Greenbaum cancer center. He was obviously in good shape and said that he would wear our cap in his next run.

The reception, besides having wonderful food and drink for us, had a cake specially made with the Spokes of Hope wheel and “Cancer isn’t contagious…” words on it. And besides that… it TASTED good!  Very much appreciated by all.

I only wish I had more time to tell Dr. Cullin how impressed I was with the work being done there. You could tell that this was a special place for all who entered their doors.

Next we ventured down to the infusion clinic. Todd was the charge nurse, overseeing the welfare of all the patients in today. By this time we had become quite accustomed to people looking at us with our cycling uniforms on. It was amazing to see how it brightened faces and brought smile to once solemn expressions.  Jay said it best when talking with lawmakers a few days later. How he and Jan Frandsen, as healthcare professionals got totally different responses from patients when they were dressed this way, delivering perhaps the same message. The colorful lycra made a statement. That these people were not there because it was there job, but because they cared. And therefore, the patients were more likely to take their words to heart.

We met with patients from very different backgrounds. Men, Women, 24 – 89. Truck drivers, retired teachers, students, clinical psychologists and factory workers. All with different life experiences, with different cancers, but they all brightened and thanked us for coming to meet them. They all were affected personally by cancer, and they all were fighting to get their lives back. The staff and the patients signed the banners. Some writing messages to loved ones, some thanking us for pursuing our mission.  And some simply writing their names so that we could take them with us to DC.

The last lady we met before departing was soon to be 90 years old. Her daughter was wheeling her out of the unit. She was a breast cancer and melanoma survivor. We joked about looking forward to hearing her name announced by Willard Scott for her 100^th birthday on the morning national news. When asked what her passions were she said “Bingo and the slots”. When I told her that she looked like a “Winner” she replied, she didn’t care, she was "playing with other peoples money."

Before we left Greenbaum Cancer Center we gave them Cancer Resource guides as well as a box of Amgen’s Breakaway from Cancer flyers to help their patients find support after they were released from their wonderful facility.  

Our day in Maryland was not yet over. We met with a cycling group from the Ulman Foundation to bike ride in Columbia Maryland. Brock Yetso, the president of the Baltimore office rode with us last year on our way to Bethesda. This year with our change in format, riding with communities in a loop rather from point to point, he and his “Team Fight” team mates planned our route. They were all strong and skilled riders. Easy to see why by the roads they have in the area. They took us on the routes used for Triathelon races, and I can tell you, they have no flat roads in Maryland! I was told that these particular courses are considered some of the toughest in the country for Triathelons.

I was very thankful for the patience of the Maryland riders. They were very accommodating and apparently happy to watch after some of our riders who were not accustomed to so many climbs. Spokes of Hope’r Laura West was a very good sport. She never complained and always seemed to have a smile on her face even though riding in Tampa Florida never really prepared her for the hills of Maryland.

Patti Beahan had a contact lens decide to leave her eye on a downhill at one point and Kathy Robinson yelled “I LOVE HILLS” in honor of CCC’rs Marcia and Greg Dana.

I got to ride with a Cardiologist and had a great conversation with him about heatlhcare informatics. He shared with me his connection to cancer through his family. He strongly encouraged genetic testing and was a joy to ride with. I also rode with a racer who works at a bike shop and will be transitioning into cyclocross soon as the weather changes.

I was delighted that I got to finish the ride with Kim.  She is on the Ulman Board of Directors and is the mother of twin 18 year old daughters. She just exuded a joy of life and riding and I know we could be great friends and have awesome rides if we just lived closer. She has only been riding 2 years but demonstrates great strength and love of the sport.

All wonderful people and riders. The ride was a blessing. We exchanged caps and they gave us water bottles and we exchanged contact information.  Thank you for a great experience… We now see why the riders who come out of Maryland are so strong! (the racer was telling me about a friend who just went to track natz in Texas for the first time – 30 year old- and placed 5^th… on the podium!)

We packed up and Kathy met with her cousin who took her to dinner. We all went in search of food and Costco to get more film for the cameras. It was interesting walking into Costco with our bright cycling clothing on. We were quite used to it. But it seemed we were kind of mobbed like celebrities when we walked in. Not far inside the door a group was surrounding some of the riders asking them for advice on helmets. People were constantly stopping us asking what we were doing. These were all opportunities to spread our message, and spread the hope.

We arrived late to CCC’r Steve Friedman’s house in Chevy Chase Maryland. He and his family opened their home to us and we had a slumber party at his house. The end to another fine Spokes of Hope day.