Closing thoughts from Todd

So there you have it. Karen wrote a pretty good summary of our week riding (and some times walking and tubing and being shuttled around) from Cumberland, MD to Washington D.C.

So what more can I add?

I guess there were two things that neither Karen nor I feel we’ve been able to aptly express in all of this blogging.

The first was just how incredible the experience was from a “connecting with the sarcoma community” and “interacting with other survivors” aspect. I think that’s really been the most difficult thing to put into words – especially for me. Karen has at least had some online interaction with sarcoma groups and she was thrilled to get the chance to meet them on the tour and get to know them as people and friends rather than just other “caretakers.” I, on the other hand, have only had a very limited connection with other cancer patients to this point. Other than maybe one person, most of the cancer survivors I knew before this trip were people I knew before either of us had cancer, so it was a new experience to meet so many new people with the only connection between us being cancer (at least initially, anyway).

As many of you know, I really like being as “normal” as possible and not considering myself a “cancer patient” so this was not something I was entirely comfortable with. What I discovered is that while I may not consider myself a “typical cancer patient” (and really, what is that?) neither did any of these other people. (Well except maybe one person – that’s a little inside joke for our fellow riders.) What I found is that these people weren’t there to talk about their cancer (although it was a convenient ice breaker); instead like me, they were there to make sure that other people wouldn’t have to deal with the things they were forced to go through by helping raise money and awareness of sarcomas.

That really blew me away. I don’t know why it should have or what exactly I was expecting, but what I found is that they just want to live as much life as I do and have a great time and a ton of laughs doing it. So very cool. And fun. So much fun. I know I will be in touch with many of those incredible people for a long, long time (of course, Facebook really helps too).

The second thing that has really hit me since I’ve gotten back home (and subsequently down to Houston) is how much of a “karmic trip” the tour has been as well.

Back in January, I had a scan that showed my lung nodules were stable. Knowing that surgery offers those with osteo mets the best chance for long-term survival, Karen asked Dr. Skubitz about it. He told us that given my history with lung issues (being on oxygen just a few months earlier) and heart issues (cardiac tampande and periocardial effusions) it wasn’t a great option for me and he wanted to see a longer period of no growth to even consider it. In February, I submitted my essay to The Liddy Shriver Sarcoma Initiative about my “Moment in Sarcoma” as well as a short note about why I was hoping to participate in the bike tour. At the end of April, I was informed that my essay (along with one other) had been selected and I would receive a sponsorship to participate. So I figured I needed to get training for what I thought would be an easy ride (I used to do much longer rides when I was a kid, how hard could this be?).

So in between continuing rounds of chemo I managed to get in some “training” in the form of our stationary bike, walking some 10-12 blocks to and from work each day, borrowing my dad’s mountain bike for rides around the lake and walking the occasional stairs at my work parking ramp.

Long story short, the training to make it 185 miles on the tour fell a wee bit short.

However, in early July (before I even left for the trip) when a new scan showed tumor growth, Dr. Skubitz asked about my “activity level” and after telling him how I was preparing for the tour, he readily suggested that I do a surgery to remove the growing tumor. Given his relatively conservative approach to my past treatments, the fact that he even thought it was a possibility again said a lot. And while we won’t actually find out until Monday if I really am physically able to have surgery, if it was not for this tour… Well, things might be looking MUCH scarier.

So yeah, overall, I would say the Team Sarcoma Bike Tour was ... um ... Worthwhile? Incredible? Uplifting? Potentially life saving? No matter what I say, it's a huge understatement ... in fact, everything you have just read or anything Karen or I may have told you about the trip in person falls into that same category. :)

- Todd

P.S. If you are interested in seeing more photos from our trip, go to:

http://www.facebook.com/album.php?aid=2029883&id=1253310134&l=18bce65332 (part 1)

and

http://www.facebook.com/album.php?aid=2029902&id=1253310134&l=7906608126 (part 2)

Good Bye Washington!

Although our bike trip from Cumberland, Maryland to Washington D.C. was long, our stay in D.C. was quite brief – in fact, we were boarding a plane back home less than 24-hours after we arrived.

But since we did not have to be to the airport until 1:00 p.m., we decided to get up early, say goodbye to everyone, and see what we could of D.C. We brought German (from Mexico) with us, and the four of us spent two hours visiting the Jefferson Memorial, the Roosevelt Memorial, the Korean War Memorial, the Lincoln Memorial, the Washington Monument (from afar) and finally, the Vietnam Memorial. The last stop was especially moving as Todd’s dad is an Army veteran and he served in Vietnam for 22 months during the war. We were all grateful for the opportunity to see such renowned landmarks before finally heading home.

As I’ve mentioned previously, the whole point of the Team Sarcoma Bike Tour was to raise awareness of sarcoma and money for research during International Sarcoma Awareness Week (July 18-25). And the 45-member “core team” we were part of was not alone! Amazingly, preliminary counts show that over 14,000 people participated in Team Sarcoma events world-wide (there were over 85 events in 14 countries and 28 U.S. states!), and hundreds of thousands of dollars were raised this year alone to help fund research to eliminate this disease once and for all (for more information about these events, visit http://www.team-sarcoma.net/). On behalf of all people touched by sarcoma (unofficially of course!), I want to send a big thank you to Bruce and Beverly Shriver, who created the Liddy Shriver Initiative and the Team Sarcoma Bike Tour in memory of their daughter, who was taken by Ewings sarcoma at the age of 37. They chose to turn their grief into motivation to make a difference for others, even though nothing can bring Liddy back, and that is an incredible gift. Also, special thanks to Mary Sorens, who is not only a survivor herself, but who has volunteered countless hours of her time (as well as her beautiful photographs) to this incredible cause. Finally, thank you to Donna Lee Owens, who sponsored Todd and gave us the opportunity to particpate in this once-in-a-lifetime event. It was an experience we will never forget.

For our part, “Team Andrews” raised approximately $3,590 to contribute to the Liddy Shriver Initiative – 98% of which will go directly to fund osteosarcoma research! Thank you so much everyone for your generosity! I believe there are still some donations that have not been reported to us, but if you don’t see your name on the right-side column of donors on this blog, please let me know! As I’ve mentioned previously, your donations really do make a difference, as we saw first-hand last week in learning about Dr. Loeb's and Dr. Toretsky's promising new research. THANK YOU all of you for being such an important part of this event. Words cannot express how much it means to Scott, Todd and I.

Love,
Karen

P.S. For an official recap of the tour, check out http://www.team-sarcoma.net/2009-events/3804

Day 7 - We Finally Arrive in Washington D.C.

Day 7 marked the end of the bike tour, and it was a very memorable day.

Our final leg of the tour began at 6:00 a.m. with a team breakfast at the hotel, and the entire group then took a ferry ride across the Potomac River to the spot where our bikes were waiting. Todd decided to take the morning off from biking so he would have energy for the afternoon ride, so he spent the morning at the ferry landing teaching a little boy from Spain how to throw a football (I’ll bet that was cute to watch!).

Meanwhile, Scott and I (along with several others) biked 20 miles from Leesburg, VA to Great Falls, MD. Unfortunately, it rained overnight, so the trail was very muddy and peddling was a challenge to say the least!! Not only was it difficult to peddle through the muck, but Scott ended up crashing his bike in the woods trying to avoid a hug puddle – yes, both father and son crashed on this tour but fortunately, neither of them were hurt. In fact, Scott and I ended up biking at a brisk pace and arriving in Great Falls ahead of schedule (albeit quite filthy!) :)

In Great Falls, we reunited with Todd and the rest of our group at a historic lockhouse located at Lock 20 on the canal, where we were treated to an old-fashioned mule-drawn canal boat ride and a delicious picnic lunch (the majority of the food on this trip was amazing – so much for losing any weight!).

After lunch, Todd, Scott and I headed out for the final 13-mile ride into Georgetown, where we planned to meet the group at mile-marker 0 to celebrate completing the tour. However, no one told us that we needed to get off the towpath and onto a paved path in order to reach the final destination, so instead of ending at mile-marker 0, five of us found ourselves alone at the end of the trail in the middle of bustling Georgetown. Oh, and I also found myself with a flat tire! But it didn’t matter – we only had to walk about a ½ mile to meet up with everyone and we were just happy to celebrate everything we all had just accomplished. All in all, Scott completed 201 miles, I completed 136 miles, and Todd completed 101 miles on this bike tour :)

After reaching our final hotel, we showered up and headed downstairs to the ballroom for a celebratory banquet. And it was quite the banquet! Our speakers were the Ambassadors of New Zealand, Mexico, and Lithuania (who attended in honor of those survivors in our group from those countries), the Director of the Johns Hopkins Center for Surgical Outcomes Research, and the Chief of the Pediatric Oncology Branch of the National Cancer Institute. Several government representatives who are working on legislation to eradicate rare cancers like sarcoma were also in attendance. To see the article and video from the banquet, go to http://tr.im/uU7C. But the real stars of the evening were each of the sarcoma patients/survivors from the “core” team (pictured here), who were honored for all they have overcome.

Following dinner, we had an incredibly memorable night with our new friends, which culminated with an “after party” of sorts in one of the hotel rooms and an impromptu pizza party thereafter. I have some funny stories -- but I won't be publishing them here! ;) Honestly, of all the amazing memories I have of this trip, this final night will probably be the thing we remember most … we laughed nonstop and had so much fun with everyone. It was truly a wonderful way to end a wonderful trip.

-Karen

Day 6 - Touring, Biking, Celebrating & Remembering

On Day 6, we started our day with a motor coach tour of the Antietam National Battlefield in Sharpsburg, Maryland, where the Civil War Battle of Antietam (i.e. the bloodiest single-day battle in American history, with about 23,000 casualties) took place on September 17, 1862. The history lesson was interesting, even if the scenery was largely just a bunch of cornfields! :)

Following the tour, we returned to the hotel, packed our luggage yet again, and returned to the C&O Canal Towpath for another day of biking. The first leg of the day was a 17-mile trip from Shepherdstown, WV to Brunswick, MD, where we had a delicious lunch at Beans in the Belfry, which is a coffee/sandwich shop in an old church building. There, we met Dr. Jeff Toretsky, an oncologist at Georgetown University Hospital, whose sarcoma research is also partially funded by the Liddy Shriver Initiative. Again, it was so wonderful to hear how the Team Sarcoma donations are being put to real-world use to help eradicate sarcoma. Interestingly, Dr. Toretsky is an old friend of one of my former colleagues from Rider Bennett, so we had an instant connection with him – what a small world!

Following lunch, we returned to the towpath for an addition 6 miles of biking. At this point, Todd decided to call it a day, so I stayed with him, and I'm glad I did -- not only did we have fun visiting with members of our team while waiting for the shuttle to pick us up, but Brent (from New Zealand) biked a short distance to a nearby town and returned with some New Zealand wine, a couple cans of Budweiser, and several Dixie cups to pass around, so we enjoyed a fun, impromptu celebration with our new friends! From there, we were shuttled to Leesburg, VA where we were able to check into another hotel, shower, and get ready for dinner. Meanwhile, Scott and several other strong cyclists had continued on for another 14 miles of biking and as you can see from the photos, it was a very muddy trip due to some afternoon rain!

In the evening, we had a lovely dinner at Lightfoot Restaurant, where Todd learned that Donna Lee (Liddy Shriver's aunt) was the one who sponsored him to join the bike tour. THANK YOU SO MUCH DONNA LEE! Without her generosity, we would not have been able to participate in this event.

After dinner, each of us was given a luminary to decorate honoring those who are fighting this disease (or were taken to soon by it) and those who have helped and inspired them along the way. It was touching to see all the glowing tributes to these special people. It was truly an evening we will never forget. The photos below show the luminary I made in honor of Todd and our new Team Sarcoma friends (mine also included a message on the back for all my special pals from the ACOR online osteosarcoma group - I love you guys!) Additionally, I've included photos of the front and back of the luminary Todd made, devoting one side to me :) and the other to our friend Betsy, who survived and is now thriving after a difficult battle with chronic myeloid leukemia.

Tomorrow is our final day of biking, and we are excited to reach D.C., but sad that this experience will be over so soon.

- Karen

Day 5 - Not Quite What We Were Expecting!

Day 5 started with a 14-mile bike ride from Shepherdstown, WV to Harper's Ferry, WV. All three of us completed the ride, and we were blessed yet again with beautiful weather (not too hot, no rain!) In Harper's Ferry, we enjoyed a guided tour of the town, which included lots of Civil War History and lots of stair climbing (whew--that's one hilly town!) The hiking was challenging for everyone, but it was hard to complain while watching German (that's his first name) from Mexico climbing the stairs two at a time with a prosthetic leg! He is amazing! In any event, we really enjoyed seeing the landmarks and taking in the beautiful scenery.

Following the tour, we had the option of continuing on with the bike trek for 14 more miles (which Scott chose) or enjoying a "relaxing" tubing trip down the Potomac River. Todd was a bit spent from the morning's bike ride, so we opted for the latter option. After a mix-up with communication about which van to take, we were relieved to catch up with the 11 members of our tubing group. Unfortunately, that's where things took a turn for the worst.

The river was low, and there was little to no current to carry us on our tubes. That meant that after spending all morning on the bike, we found ourselves paddling and kicking with our hands and feet non-stop in the river to achieve the slightest movement. It was exhausting -- no one told us this would be a triatholon! Eventually, we would hit some currents, but this just meant we were jossled into the numerous rocks on the river (which could really hurt if you weren't careful!) At one point, I got sucked down off my tub into a particularly fast and rocky whitewater area, where I was hit underwater by the rocks on both elbows, both knees, my chin, my hip, and my back and then got stuck in the rocks under water with the current rushing over my head. NOW THAT WAS SCARY! Luckily, I was able to free myself and get my head back above water, but there was still another hour of so of tubing (ahem, paddling) ahead, and now we were facing a strong head wind, so it seemed we were going backwards if anything (plus, I had a hard time paddling with my sore arms and legs!). It was pretty miserable to say the least, especially for the sarcoma survivers in our group who were facing a variety of physical challenges. Our whole group finally made it out of the water at 6:15 p.m. (which so happened to be the time our dinner started) and we were eventually bused back to the hotel to quickly shower and run off to the restaurant. The good news is that our anger at the situation ultimately turned into a great bonding experience for the 13 of us, and it probably made for one of the most memorable parts of the trip!

We did make it to dinner eventually, and just in time to hear Dr. David Loeb, an oncologist from Johns Hopkins, speak about the research he is doing thanks, in part, to funding by the Liddy Shriver Sarcoma Initiative (see everyone - your donations to Team Sarcoma/Liddy Shriver are really making a difference!!!) And we were thrilled to learn that just yesterday, a new clinical trial was approved for sarcoma patients with metastatic disease. Obviously I asked lots of questions and spoke to Dr. Loeb afterwards, and I'm going to investigate whether it is possible for Todd to get into this trial. So stay tuned! It sure was a wonderful way to cap off the evening and to put into perspective the real reason we are here.

Thanks again for continuing to follow our journey!

Love,
Karen

Day 4 - Big Bike Day

Day 4 was our biggest bike day on the tour so far. After spending one night at the Country Inn & Spa in Berkeley Springs, WV, we started the day early with breakfast at 7:00 a.m., packed our luggage, and hit the C&O Canal Towpath again. We got a late start due to an issue with Todd's bike, but our guides (Joe, Don & John - who are awesome by the way!) quickly fixed it and we were content to ride behind the majority of the pack at our own pace. The terraine continues to be a challenge, but the trip went well nonetheless!

This morning, Todd, Scott & I all biked the first 12 miles together until we reached our first tourist destination - Fort Frederick, Maryland, where we toured the fort and museum and enjoyed learning more about its history.

From Fort Frederick, we biked an additional 13 miles until we reached a pavillion where we ate lunch. Todd decided after 25 miles for the day (wow!!) that he'd better quit while he was ahead, so he opted to go to the next hotel (the Bavarian Inn in Sheperdstown, WV) in the shuttle van to shower and rest up.

Todd keeps saying how disappointed he is in himself that he didn't finish the 36-mile goal he set for himself, but he's obviously the only one that sees his performance as anything short of amazing. Jeez, he was on chemo up until a couple days ago and his lung function is compromised! Plus, Todd and Marius (from Lithuania) are the only two people on this tour that have lung metastases and are currently on chemo, so the fact that they are participating at all is nothing short of incredible. Anyway, I wanted to join Todd for some R&R back at the hotel too (it's been a hectic week so far and we haven't had a lot of down time), but there wasn't room in the van and I still had energy, so I opted to bike the next leg of the trip. All in all, I completed 36 miles today - which is definitely more than I've done in training! And Scott, rock star that he is, completed the full 52 mile trip with his new buddy John from Denmark. :)

We capped the night off with a nice dinner in the ballroom of the Bavarian Inn and listened to a reading from a woman who wrote a book called "The Letters" about losing her husband to sarcoma many years ago, only to be diagnosed with the same type of sarcoma herself several years ago. The reading was beautiful and stirred a lot of emotion in the room. Unfortunately for me, the talk of losing a spouse to cancer stirred up a little too much emotion (I try to keep buried down my fears of losing Todd and it was hard to stop crying once I started!). But after a hot shower, I felt much better and we were able to drift off in a nice, happy sleep.

We can't wait to continue the trek tomorrow!

- Karen

Day 3 - Biking (Scott) & Sightseeing (Todd & Karen)

On Day 3, Scott continued with the bike ride while Todd and Karen rested up and joined a fun sightseeing tour with part of the group. Scott pedaled with the strong cyclists from Paw Paw, WV to Hancock, MD (about 32 miles).

Meanwhile, Todd and Karen started the day with a pontoon boat ride on Lake Habeeb, followed by a visit to an Aviary, where we saw some beautiful owls and hawks. We then visited Sideling Hill and its tourist center, where we got to see one of the largest “cuts” into a mountain (for a highway to pas through) in the country. The cut exposes approximately 850 feet of syncline formed nearly 350 million years ago, so it was pretty cool. :) After lunch, both the bikers and the sightseers were shuttled to Berkley Springs, WV, where we are staying in a quaint little hotel tonight before biking out tomorrow. We also had a lovely dinner tonight with the Team Sarcoma crew at a local restaurant with fabulous food, so it’s been a great day!

Tomorrow is probably going to be the most challenging part of the tour in terms of mileage (I believe it’s about 52 miles or so). And unfortunately, due to logistics of the C&O Trail, we have not had a SAG wagon following us on the path. In fact, there are large portions of the trail that are not even accessible by car and where there is no cell phone service. Obviously, that’s been a surprise to all of us (the coordinators of the trip included) so we’re trying to decide what to do about biking tomorrow. Todd, of course, feels rested from today and wants to get back out there, but we will have to make sure that’s feasible giving the logistics of the trail. So, stay tuned – I will post again tomorrow to let you know how the day went!

Thanks again to all of you for following this blog! This is been a great trip so far and we are enjoying sharing it with all of you. Thanks, too, to everyone who got the word out on Facebook this week about sarcoma – we appreciate you helping to raise awareness along with us!

- Karen