Team Andrews - 2009 Team Sarcoma Bike Tour

Closing thoughts from Todd

2009-07-31T11:02:00.022-05:00

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!

2009-07-25T22:53:00.007-05:00

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.

2009-07-24T02:00:00.013-05:00

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

2009-07-23T23:41:00.022-05:00

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!

2009-07-22T21:19:00.002-05:00

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

2009-07-21T21:03:00.007-05:00

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)

2009-07-20T20:40:00.011-05:00

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

Day 2 - C&O Canal Towpath

2009-07-19T08:12:00.009-05:00

On Day 2, we officially commenced the bike tour! We set off from Cumberland, MD on the C&O Canal Towpath and biked about 15 miles to the Michael Cresap House in Oldtown, MD (Cresap is the inspiration for the main character in the movie The Patriot). The scenery along the path is gorgeous, with lots of trees/shade, the canal and locks, and even the occasional deer :) Plus the weather has been gorgeous (not nearly as hot/humid as we feared it would be)! However, the path itself is a little different than we expected. Unlike the smooth, paved surfaces we trained on in Minneapolis, the towpath is made of packed dirt and rocks, which makes the biking harder (and muddier!) than we're used to. But that's okay - we are still thoroughly enjoying ourselves, and the miles went by quickly while we were getting to know other members of our team.

After a brief stop at the Cresap House, we had a nice picnic lunch to refuel before continuing the journey. Unfortunately, Todd was “tricked” (so he says – we think he was trying to show off) into thinking he could take a shortcut to the lunch break spot and took a nice spill down a short hill. He ended up coming to a stop face-down with the bike on top of him, but just like with cancer, he bounced right back up and except for some dirt skid marks on his shorts and shirt, he showed no ill effects and kept going.

After lunch, we set off for another 15 miles of biking until we reached Paw Paw, WV. There we saw the Paw Paw Tunnel – a .5+ mile canal tunnel through a mountain that was built using only pick axes, shovels and black powder. While it was quite impressive, we also learned that by the time it was completed in 1850, the railroad had already been up and running for 8 years, making it a bit of wasted time and money. (I guess some things just don’t change.)

From the tunnel we all shuttled back to the hotel to shower and change and meet up for dinner. After dinner, each of the dozen or so sarcoma survivors in our group said a little something about a moment during their battle (just one, although we all know there are many) that really impac ted them. The stories were incredible, inspiring, and emotional. And the whole thing really drove home how amazing the people on this tour really are – just a terrific group of people who really want to make things better for others facing this disease. Another interesting thing about this year’s tour is that our team is primarly made up of “young adult” survivors (in their 20s and 30s), rather than pediatric patients are their parents and older adult patients like in years past. So needless to say, it has been great to connect with people our age who really know what we’ve been going through these past few years.

Tomorrow, we are taking a break from biking (it’s another 30 mile ride -- but all before lunch this time) to do the walking tour instead. Aside from letting our butts and legs rest, we’re excited to spend some time with some of the non-bikers and get to know them as well.

By the way, the Cumberland Times did a little story on Team Sarcoma yesterday – you can check the story and group photo out here if you’re interested:

http://www.times-news.com/archivesearch/local_story_200000356.html

Also, Mary from our group has started uploading photos from this event to the following link:

http://tinyurl.com/m94doh

Love,
Karen & Todd

Day 1 - Cumberland, MD

2009-07-18T21:36:00.008-05:00

Day 1 of our trip has been wonderful! After sleeping in and having breakfast at the hotel, we spent some time strolling on the downtown Cumberland Pedestrian Mall and enjoying the lovely old architecture. At 3:00 p.m., we met the Team Sarcoma group at our hotel and went across the street to get fitted for our rental bikes and collect our numerous bracelets (which each represent something, like our participation in the event, our level of biking, etc.). The bikes seem really comfortable and they ride smooth, so we are looking forward to starting the tour tomorrow! After the bike fittings, the group went on a little walking tour of the area, and this evening, we assembled for dinner on the patio at Ristorante Ottaviani’s for some good Italian food and good conversation. :)

I can’t express what a cool event this is already or how lucky we feel to be part of it. Since July 18-24 is International Sarcoma Awareness Week, there are sarcoma activities going on this week all over the world, but this is the big “core team” event and it’s a very special atmosphere. Our group is made up of about 45 people, representing 10 countries (so far we’ve met people from Mexico, Lithuania, New Zealand, Italy, Spain, Canada, Poland, & Denmark) and 10 U.S. states, and we have really enjoyed meeting them and hearing about where they are from and the journeys that have led them here. Getting to know people who have first-hand experience with what we’ve been going through the past five years is … well, it’s hard to put into words, actually … but it’s incredible and it creates an instant closeness despite the fact that most of us are total strangers. It’s also been especially fun for me to finally meet people I’ve grown very close to online through the ACOR osteosarcoma support group (Mary, Shelly & Bruce) and their families. Plus, the 45 people from this event have already raised an estimated $70,000 for sarcoma research - how great is that?!?!

Well, the bike tour officially begins tomorrow morning, so I better head up to the hotel room and get some rest. I’ll update again tomorrow night to let you know how Day 2 went! Thanks for visiting!

Love,

Karen

Planes, Trains & Automobiles

2009-07-17T21:36:00.008-05:00

We made it to Cumberland, Maryland (finally!) Yes, the 2009 Team Sarcoma "Core Team" Bike Tour is officially under way! :)

It’s been a long day, filled with numerous forms of transportation. Our trip started at 5:00 a.m. (thanks to Emily Wozniak for the early ride the airport!). We boarded a 6:40 a.m. flight from Minneapolis to Milwaukee and, after a short layover, continued on to Washington D.C., where we arrived at 12:00 p.m. Following a cab ride to Union Station, we had a leisurely lunch and then boarded an Amtrak train at 4:00 p.m. The train was actually pretty fun - much more spacious and comfortable that the cramped airline seats! In any event, we finally arrived in Cumberland, MD at 8:00 p.m. Whew! We are a bit weary (especially Todd after just finishing a week of chemo), but honestly, the trip went faster than I expected and it’s been pretty fun already. We capped off the night with a delicious dinner and cold beers at a local pub down the street from the hotel, and we will be hitting the sack shortly.

Tomorrow, we will meet with the Team Sarcoma leaders at 2:45 p.m. to get fitted for our rental bikes and get more information about the tour, which starts on Sunday. We will also get the opportunity to meet some more participants and have a nice dinner out with the group. Should be fun - we can't wait!

There is not much to report yet, but I thought I’d post some pictures from our trip so far. Is it just me, or are Todd and his Dad looking even more alike now that the chemo lightened up Todd’s hair?! :)

Once again, thank you to all of the generous people who made donations to our bike team. I don’t have an exact total for what we’ve raised (as some Internet donations have not yet been tallied) but I believe we are in the neighborhood of $2,900! That is so awesome and we REALLY appreciate it!

If I have access to the hotel computer, I'll update the blog daily with a recap and photos of our journey. Thanks for visiting!

“Team Andrews”
- Karen, Todd & Scott

The "Team Sarcoma" T-shirts we wore today remind us exactly why we're here!

We leave for D.C. in 8 days!

2009-07-09T20:22:00.015-05:00

The Team Sarcoma Bike Tour is just over a week away! Todd is still struggling a bit with the training due to his chemo side effects, but we got out on the bikes tonight and he did great! :) Having this tour to look forward to has really helped keep our minds off the uncertainty that lies ahead, and we know this tour is going to be a once-in-a-lifetime experience. We are really looking forward to it!

Thanks so much to all of you who are following our blog and who have donated to the Liddy Shriver Sarcoma Initiative. Due to your generocity, our team alone has raised $2,325 for sarcoma research so far - isn't that wonderful?!?! We sure have some amazing people in our lives. Thank you all!

So here's our plan: Scott (Todd's dad) will be meeting us in Minnepolis and the 3 of us will fly to Washington D.C. on Friday, July 17 at 6:30 a.m. We have a quick layover in Milwaukee and will arrive in D.C. at noon. From there, we will have to occupy ourselves until 4:00 p.m., and then we'll take a 3-hour train ride to Cumberland, Maryland. Fortunately, we can check into the hotel and relax for the evening before joining the group on Saturday to get fitted for our bikes, tour the C&O Canal Museum, and have dinner at Ristorante Ottaviani’s on the downtown Cumberland Pedestrian mall. We are really looking forward to meeting the other participants in this event - especially those we've gotten to know through our online support group! We start the bike ride on Sunday, July 19 -- the first leg of the tour is about 30 miles with a break mid-way through the trip so we can tour to the Lockhouses. If we have Internet access, I'll try to post daily updates and pictures so we can share the experience with you. :)

Love,

Karen

Did anyone notice it was HOT today?

2009-06-22T20:47:00.010-05:00

The Team Sarcoma bike tour is 26 days away!

Between Todd’s chemo side effects and the rain, we’re a bit (okay, a lot) behind schedule training for the tour. But as you can see from the photo, we got out on our bikes tonight (in the 93-degree humid weather no less!) and put in 8 miles together. Granted that’s not going to cut it on the big bike tour in July, but it’s a start. And for Todd to do 8 miles in this heat during chemo is pretty impressive if you ask me! Todd remains frustrated that he’s not progressing faster, but I think he’s doing great. Amazing, actually, with everything he’s been through. And besides, Scott (Todd’s dad) did a 30-mile bike ride yesterday, so technically, our team as a whole is right on course! :) I guess there’s no question who will be carrying Team Andrews on the 185-mile trek, eh?! Fortunately, this is not a race; the point of the bike tour is to raise awareness/funding for sarcomas and to have an incredible experience, and we can do that regardless of how many miles we bike.

We are grateful for the donations we have received in Todd’s honor to support our team, especially in this tough economy. Thank you!!! Sarcomas are rare, aggressive cancers that get very little funding, so your donation will definitely make a difference. If you donated but your name is not listed on this blog, please let me know – I do not have an updated list of the online donors yet, but hopefully I will soon! Your kindness and support means so much to us. We are blessed to have so many wonderful people in our lives.

Love,
Karen

Training is Hard - But Scenic!

2009-06-09T23:05:00.016-05:00

Hello everyone!

Our training for the bike tour continues, but unfortunately, it’s not going as well as we hoped. I would not recommend trying to train for a bike tour after 5 years of cancer treatment while currently on chemo 3 out of 4 weeks of every month!

As most of you know, Todd starts feeling pretty lousy from his second “on” week of chemo through the first few days of his “off” week. Since biking is not possible those days, he feels like he is losing a lot of valuable training time. Todd is disciplined about getting out on the bike every chance he gets when he’s feeling (somewhat) better, but he is frustrated that he is not seeing more progress. I think the maximum distance he’s gone so far is about 5 miles at a time (a couple times per week), and since even that is challenging, he’s worried about how he’ll fare on the tour. Surprisingly, he feels like his legs give out even before his lungs (my biggest concern, however, is his heart). But given all the chemo/radiation he’s had over the years, it’s amazing that he’s able to bike at all. Remember, it was not all that long ago that he required oxygen just to walk! I am just really proud of him for what he’s accomplished already -- whether he bikes 5 miles or 185 miles in July, he is my hero. And despite the challenge, we are enjoying our rides together around Lake Nokomis - as you can see, the scenery is lovely!

At this point, the big bike tour is only a little over five weeks away – where did the time go?! It’s going to be here in no time, and we’re getting very excited about it. Todd’s parents and our nephew came to visit us this weekend, and Todd and his dad spent some time in the garage fixing some issues with Todd’s bike. We also took a trip over to REI to invest in some new gear (we now have bike gloves and padded shorts to go with our new helmets!). Plus, we have booked our flights to Washington D.C. and our train tickets to Maryland, so it’s all starting to come together. This is definitely going to be a once-in-a-lifetime trip!

If you have the means to do so, we would really appreciate if you would send donations in honor of Todd to the Liddy Shriver Sarcoma Initiative, who organized the bike tour. Although the bike tour raises money and awareness of all types of sarcoma, they have done so much for osteosarcoma (Todd’s type of cancer) in particular. In fact, 97% of donations to the Liddy Shriver Sarcoma Initiative go to promising peer-reviewed research, and at a time where osteosarcoma is getting virtually no attention or funding, the Liddy Shriver Sarcoma Initiative has given $200,000 to osteosarcoma research grants (not overhead costs) in just two years. We need to keep funding organizations like this if we are every going to find a cure for Todd and so many other young people like him. Sorry for the sales pitch, but obviously raising money to fight this awful disease is extremely close to my heart.

Thanks to those of you who are following our blog – we appreciate your support so much! I’ll keep you updated on our training progress.

- Karen

Gearing Up for the Bike Tour!

2009-05-31T16:20:00.003-05:00

2009 Team Sarcoma “Core Team” Bike Tour
July 18-25 from Cumberland, Maryland to Washington, DC

Raising Research Funds and Awareness of Sarcoma

Sarcoma is a rare and dangerous cancer of the connective tissues (such as bone, nerves, muscles, cartilage, joints, or blood vessels). It affects both children and adults. Between 15-20% of all children’s cancers are sarcomas and about 1% of adult cancers are sarcomas. Todd is fighting a high-grade osteosarcoma (bone cancer) called chondroblastic osteosarcoma that has metastasized to both lungs.

On July 18th, the participants forming the 2009 "Core" Team will meet in Cumberland, Maryland, to begin their tour along the C&O Canal Towpath that will take them into Washington, DC on July 24th. The event is targeted to draw 50 cyclists including sarcoma patients, caregivers, physicians, friends, families, and those concerned about sarcoma. The mantra of the Team Sarcoma Initiative is “Sarcoma Knows No Borders,” and accordingly, people of different ages and backgrounds and from several countries will be participating on the "Core" Team.

The "Core" Team is part of an internationally coordinated set of events called the 2009 Team Sarcoma Initiative, a.k.a. the International Sarcoma Awareness Week ("ISAW") taking place worldwide during July 18-26th to raise public awareness about this disease and the impact it can have on families and to raise funds to support sarcoma research. ISAW involves thousands of people worldwide. People form local "Team Sarcomas" in their home countries around the globe and they cycle, run, walk, hike, swim, etc. on one or more of the days that the members of the "Core" Team are on their tour along the canal. The media coverage of the various events helps make hundreds of thousands of people aware of this devastating and often deadly cancer. These events also raise hundreds of thousands of dollars to support research to find methods to diagnose, treat and cure this disease.

"Core Team" Bike Tour Itinerary

July 17: Fly from Minneapolis, MN to Washington D.C. Take the train to Cumberland, MD.

July 18: Get fitted for our bikes, tour the C&O Canal Museum, exhibits and canal boat, and have dinner at Ristorante Ottaviani’s on the downtown Cumberland Pedestrian mall.

July 19: Bike approximately 15 miles from Cumberland to the Michael Cresap House in Oldtown, Maryland (with visits along the way to the Lockhouses at Lock 70 and Lock 75). Stop for lunch, then bike 15 miles to Paw Paw, West Virginia. Dinner at the Carmicheals.

July 20: Bike 32 miles from Paw Paw to Hancock, Maryland, part of the way on the Western Maryland Rail Trail ("WMRT"). After lunch, we will shuttle to Berkeley Springs, West Virginia, where we will visit the Berkeley Springs Museum and swim in one of the oldest swimming pools in the U.S. Dinner at Tari’s Café.

July 21: Bike 18 miles from Berkeley Springs to Fort Federick, Maryland (we will tour Fort Federick), then bike 40 miles to Shepherdstown, West Virginia (where we will tour the Four Locks ). After lunch, we will take a motor coach to the Antietam Battlefield (which we will also tour). Dinner at the Bavarian Inn.

July 22: Bike 14 miles from Shepherdstown to Harper’s Ferry, West Virginia, where we will have time to explore the town, go tubing down the Shenandoah River, and go on a "O’ Be JoyFull" Historical Town Walking Tour. We will then bike 14 miles back to Shepherdstown. Dinner at the Yellow Brick Bank.

July 23: Bike 17 miles from Shepherdstown to Brunswick, Maryland, where we will visit the Brunswick Railroad Museum. After lunch, we will bike 20 miles to White’s Ferry (and stop at Monocacy Aqueduct along the way). At White’s Ferry, we’ll take the ferry across the Potomac and go on to Leesburg, Virginia. Dinner at the Lightfoot Restaurant, followed by a luminary ceremony.

July 24: We will take shuttle to Great Falls, Maryland, where we will take a mule-driven Canal Boat Ride. After lunch, we will bike 10 miles to Georgetown, and then either bike or shuttle to the National Mall and the Capitol in Washington D.C. to post a "Rights of Patients with Sarcoma" proclamation on Congress’ door. Closing dinner banquet and celebration at the Holiday Inn.

July 25: The tour ends with a morning breakfast at the hotel. We will then fly back to Minneapolis!

*** We would greatly appreciate sponsorships/donations to "Team Andrews" for the 2009 Team Sarcoma "Core Team" Bike Tour. Information about donating is located on the right-side column of this blog. Be sure to mention that your donation is in honor of Todd Andrews so we will be notified and can thank you personally! Thank you very much! ***

Interview with Todd & Karen by Mary Sorens, Liddy Shriver Sarcoma Initiative

2009-05-31T15:44:00.000-05:00

MOMENTS IN SARCOMA AWARD RECIPIENT: TODD ANDREWS
http://awards.team-sarcoma.net/

On April 28, 2009, the Liddy Shriver Sarcoma Initiative announced the two recipients of the Moments in Sarcoma awards. Todd Andrews, an osteosarcoma survivor from Minneapolis, MN, received a sponsorship to participate in the “core” Team Sarcoma Initiative bike tour. While some of Todd and Karen’s thoughts were presented in the press release, we thought visitors might enjoy reading more of what they had to say about their lives and the Moments in Sarcoma award.

An Interview with Todd:

Q: How did you choose what to write about for the Moments in Sarcoma project?

Todd: Having battled this disease for five years now, there were plenty of moments I could have written about. A lot of very meaningful or moving moments, but when I thought back to right after I was diagnosed, other than the actual bad news, this was the moment that stood out. “Here Comes the Sun” has been a theme song and an inspiration in my continued fight and something I hadn’t told a lot of people about, so this seemed like a great way to really express how big of a moment it was to me. In fact, what I wasn’t able to tell in the story (given the word count constraint) is that after I left the clinic that day, the song came on again in the car on my way home and then later the next day. And it’s not as if this is a song that’s played a lot, so while it definitely seemed like the sign I was looking for at the time, “someone” made sure the message was reinforced a couple more times, just in case I missed it the first time.

Q: You were told that you probably wouldn’t live 5 years when you were 26 years old. Most of us can’t imagine…what was that like?

Todd: Well, I wasn’t actually told that until it metastasized to my lungs in 2005. Originally, the doctor told me that in 65 to 70% of cases, osteosarcoma is curable if caught early enough. At the time they were hopeful mine was. When we asked what happened to the other 30-some percent, the doctor was honest with us and told us, “they die.” But I just always lumped myself into the “curable” group from the beginning and told myself and my family that I would beat it. And I believed it. I still do. So even when it came back in my lungs and the doctor gave me those horrible odds of survival, I was certainly scared but I wasn’t about to call it quits. The numbers by themselves can be scary, but like one of the doctors told me, I’m one person, not a percentage of a person so those numbers don’t mean much to me specifically. I figure given the incredibly slim odds of even getting this cancer in the first place (nothing about my osteosarcoma has ever been considered “typical”) I’ve already kind of “won the cancer lottery,” so why can’t I overcome the odds and keep on living? Possibly until they find a cure. I guess that’s always been my attitude.

Q: What has helped you beat the odds?

Todd: I think aside from keeping a positive attitude, the support group I have around me in my wife and family and friends has been a huge source of strength to me. They keep me going. Even with cancer, I love my life and it’s because I get to spend it surrounded by incredibly wonderful and amazing people.

Q: What are your hopes for the Team Sarcoma bike tour experience?

Todd: When I was a kid, I used to participate in bike tours with my dad and brother. But that was almost 20 years ago, so this is a terrific opportunity to do another one and get a chance to relive a little bit of my childhood. Aside from that, I’m also really interested to meet the other people on the tour because we already have a passion for curing sarcomas in common and I’m excited to find out what else we might have in common. It should be a blast!

Q: Who will come with you, and how have are they significant in your life?

Todd: My wife and dad will be joining me. Obviously they are both incredibly important to me. Karen, my wife, has been by my side throughout my entire battle and provides me with more love and support than anyone - she’s absolutely amazing. My dad lives a few hours away, so I don’t see him as much as I might like, but like I said, we both have such fond memories of our past bike tours when I told him about this one his immediate response was “Where is it? I’ll be there.” This bike tour can’t help but make some great memories for all of us. I can’t wait.

Q: Is it important to work to increase sarcoma research funding? If so, why?

Todd: Absolutely. There are no “insignificant” cancers - they all need to be researched and studied. But I think because sarcomas are less prevalent than other cancers, they tend to be under-funded and under-studied and that is really no excuse. The Team Sarcoma Initiative is helping fill a big need in raising money to study sarcomas and hopefully eliminate them once and for all.

An Interview with Karen, Todd’s wife

Q: How would you describe Todd (in a few sentences)?

Karen: When I first met Todd 11 years ago while we were in college, I was attracted to him because he’s confident, smart and funny (not to mention handsome, of course). I truly think those same qualities are helping him now. He’s confident enough (and stubborn enough!) to believe he can overcome anything cancer throws at him, smart enough to understand the statistics mean nothing at this point, and funny enough to get both of us through the really tough parts. I think he’s uncomfortable when people describe him as “inspirational” — since he thinks he acts like anyone would in the same situation — but the way he has maintained such normalcy, kept his sense of humor, and overcome so many medical obstacles while fighting osteosarcoma inspires me and so many other people every day.

Q: What do you think participating in the Team Sarcoma bike tour means to Todd?

Karen: It is an enormous honor — it’s all he’s been talking about! Obviously, he’s excited about bringing awareness to sarcoma, meeting other patients/supporters, and hopefully raising some money to aid the cause. But beyond that, this is a goal Todd set for himself and I think it will mean the world to him when he achieves it.

Before cancer, Todd loved playing sports and exercising, but cancer has taken much of that away from him. Between the allograph in his left arm, countless rounds of chemo, three lung surgeries, radiation, and a near-fatal heart failure episode, Todd has largely been forced to watch from the sidelines these past few years. The lowest point was in January 2008, when a massive pulmonary embolism left him dependent on an oxygen tank at the age of 30. Doctors told us that due to the scarring and limited function of his lungs, he might require oxygen permanently. But Todd didn’t accept this and to everyone’s surprise, 10 months later, the oxygen tank was removed from our home. The bike tour gives Todd something to work towards physically and mentally, and participating in this event after dealing with so many setbacks will be a real source of pride for him.

Q: What do you hope the bike tour experience will be?

Karen: Both Todd’s dad (an avid biker) and I (a non-biker) are going to join Todd for the bike tour. I’m sure Todd’s dad is excited about the opportunity to be touring with Todd again, since the two of them used to do bike tours across Wisconsin many years ago. Plus, since they live 200 miles away, Todd and his dad don’t get to spend as much time together as they’d like. As for me, I’m excited to be there to support Todd, and seeing him achieve this goal is going to be very emotional. To see Todd participating in a bike tour after all he’s been through is really a miracle. This is just another example of how anything is possible. I’m so proud of him already! This is going to be an incredibly memorable experience for all three of us.

Q: You have been Todd’s partner and caregiver throughout a five-year ordeal. Is there anything you would like to share with other spouses and caregivers who are facing what you’ve faced?

Karen: When your loved one is diagnosed with cancer, everything changes in an instant. One day, you’re living a normal life and then suddenly, you are thrown into a new world of chronic illness and uncertainty. From then on, your life revolves around cancer — monitoring symptoms, dealing with side effects, living in the hospital at times, waiting nervously for scan results — and you lose any sense of control you once thought you had over your future. You have to learn to “live one day at a time,” but that’s a lot easier said than done. Chronic stress becomes a way of life, and you will grieve over your lost sense of normalcy.

For me, the hardest part has been the unrelenting fear of losing Todd. Oddly, this fear usually hits me in between crises, when things probably appear “fine” to others. A couple years ago, I was struggling emotionally in such an unhealthy way that I had to seek help. And I am so glad I did! I hope other spouses/caregivers recognize that it’s okay to admit when they need help and will seek it out. It’s important to take care of your own emotional and physical well-being not only so you can continue to care for the patient, but also so you can make the most out of whatever time you have together.

Although this is a tough road, it hasn’t been all bad. Todd and I are more in love than ever. We have been surprised and humbled by the kindness and support we have received, not only from family and close friends, but coworkers and strangers too. We have drawn immeasurable strength from the notes people have left on our CaringBridge website during both good times and bad. I have found both medical information and friendship through an online support group devoted to osteosarcoma. Most importantly, we have learned to appreciate life in a unique way and to be grateful for every single day we get to spend together. My hope for other spouses/caregivers is that they can find their silver linings as well.

Press Release

2009-05-31T15:38:00.000-05:00

Two Cancer Survivors Awarded the Trip of a Lifetime with the Team Sarcoma Initiative
http://www.prweb.com/releases/2009/04/prweb2359324.htm

Ossining, New York (PRWEB) April 28, 2009 -- The Liddy Shriver Sarcoma Initiative is pleased to announce the recipients of the Moments in Sarcoma awards. German De la Rosa Cabrera of Mexico City, Mexico, and Todd Andrews of Minneapolis, MN, have been chosen to receive sponsorships for the Team Sarcoma Initiative bike tour from July 18-25, 2009.

The online Moments in Sarcoma challenge invited participants to write briefly about their experiences with sarcoma, a rare and dangerous disease that accounts for 1% of cancer cases. Poignant submissions poured in from around the world, and one entry is published daily at the Team Sarcoma website.

De la Rosa Cabrera's submission summarized his struggle with osteosarcoma and his life now, 13 years later. When he was just 14, De la Rosa Cabrera injured his knee playing basketball. Like many sarcoma patients, he thought the swollen mass was just an injury, but six months later he was diagnosed with osteosarcoma. While his peers were out playing sports, he endured chemotherapy and surgery.

"It was very difficult to live with. You really don't know what to do. I personally think it helped me to mature and grow, to see life from another point of view and to appreciate the moments I am presented with in life," De la Rosa Cabrera said.

Doctors in Mexico City removed the tumor and saved De la Rosa Cabrera's leg, but he dealt with pain and additional surgeries for the next ten years. Finally, he chose to have an amputation.

"It was a painful process for ten years, and the decision to amputate the leg freed me. I am in better health without suffering, and I can do more independent living…playing sports and in my band," De la Rosa Cabrera explained. At the age of 26, he is now enjoying a full life: "I'm an audio engineer, music producer, bassist and vocalist of my band, Televisor. I'm helping people who suffer through similar situations."

De la Rosa Cabrera is looking forward to seeing new places and experiencing the bike tour with other cancer survivors. His message is one of hope: "Cancer doesn't mean death.... Cancer is part of life. It helps us to mature and see life in a different way and makes us better people."

Andrews' submission described a powerful moment during an MRI scan five years ago. He was grasping for hope when the song "Here Comes the Sun" started playing in the background. Andrews, 31, explains: "Having battled osteosarcoma for five years now, there were plenty of moments I could have written about. But when I thought back to right after I was diagnosed, other than the actual bad news, this was the moment that stood out."

When Andrews developed metastasis in 2005, he was given some grim statistics. He recalls, "I was certainly scared, but I wasn't about to call it quits. I figure, given the incredibly slim odds of even getting this cancer in the first place, I've already kind of 'won the cancer lottery,' so why can't I overcome the odds and keep on living?"

Andrews grew up riding in bike tours with his family and is eager to relive a bit of his childhood. Even while on chemotherapy, he is excited about building up his strength and sharing the experience with his wife and father. His wife, Karen, said: "The bike tour gives Todd something to work towards physically and mentally, and participating in this event after dealing with so many setbacks will be a real source of pride for him."

Andrews also hopes to advance the cause for sarcoma research. He explained: "There are no 'insignificant' cancers - they all need to be researched and studied. But I think because sarcomas are less prevalent than other cancers, they tend to be under-funded and under-studied, and that is really no excuse. The Team Sarcoma Initiative is helping fill a big need in raising money to study sarcomas and hopefully eliminate them once and for all."

To learn more about the Team Sarcoma Initiative, view a full listing of events, and get involved, visit: http://www.team-sarcoma.net. To read more about the Moments in Sarcoma award recipients, visit http://awards.team-sarcoma.net.

About the Team Sarcoma Initiative: The global Team Sarcoma Initiative is coordinated by the Liddy Shriver Sarcoma Initiative, an all-volunteer organization dedicated to improving the quality of life for people dealing with sarcoma. The Liddy Shriver Sarcoma Initiative publishes peer-reviewed articles in the Electronic Sarcoma Update Newsletter; provides comprehensive, sarcoma-specific clinical trial information at http://www.SarcomaHelp.org; and has raised over $1.25 Million dollars to fund in peer-reviewed research grants.

Todd's "Moment in Sarcoma" Entry

2009-05-31T10:58:00.000-05:00

A Moment in Sarcoma from Todd
Minneapolis, Minnesota

CT scans only take a few minutes. Except for the first one after you’ve been told you have cancer. It lasts for weeks.

Twenty-six years old. Married. College-educated. Gainfully employed. Fortunate to have a rather blessed life. And now faced with the uncertainty of how much longer that life would continue and how much “living” it would be able to do.

Scared. Sad. Frustrated. Questioning. Wanting something - anything - to lean on at that moment to know this can be overcome. That things will be okay.

I’m not - or should I say, “wasn’t” - a very spiritual or religious person. But moments like this in life give way to needing a “higher answer.”

With my heart racing and nerves on end, I continued to feign a smile and calmly chat with the CT tech, trying not to show the emotion that was just beneath the surface. I concentrated on not letting my voice crack. On keeping my breathing even. On holding back tears. And then I silently prayed.

To whoever would listen.

“Please send me a sign,” I started. “Any sign. Something to let me know that I will be all right. That I can beat this. That this can be overcome.”

“I NEED this. I need this sign.” For the first time since I lay down on the CT table, I became aware of the light sound of a radio playing in the “control area” in the adjacent room. It had been on the entire time, but it was just now that my ears tuned in. An unknown song faded out. A new one faded in.

“Here comes the sun. Do do do do. Here comes the sun. And I say, it’s all right.”

Goose bumps. A smile. And some soft tears.

Right then I knew. It would be all right.