From advice on where to go next or just having a few laughs, the people you meet and see on the road could be anything from a wealth of knowledge to absolute nut jobs. For the most part, we have known which ones to avoid (hitchhikers, homeless people, etc.) and which ones could help us get the most of our journey (our blogging cyclist friend, the lovely ladies from Arizona we met in Vegas, etc.). Though almost all of the people we have met have been amazing people, there were two that we met in Zion National Park that particularly stood out to me.
First off, Zion (another desert park) is absolutely beautiful, and the hike we did gave us a tremendous view of the canyon (and was rather difficult with the elevation change). The Angels Landing trail began with long switch backs, which we started in the heat of the day. I did not think I was going to make it as I heaved myself up the first section. Eventually those switchbacks leveled out and I caught my breath, just before the shorter switchbacks came in and snatched the wind right out of me again. The coolest part came after those short switchbacks, when we hiked out to get to our view of the canyon. What we hiked along my father tells me is called a window, it was a narrow path along a ridge, where there are steep drops to either side of you. The Angels Landing window had chains set up to help guide you up the steep and narrow passage (it was not as strenuous as the switchbacks for me, and was by far one of if not the coolest thing I have ever done). If you want an idea of the view from the top you should check my Instagram (http://instagram.com/rotz_l), but I will tell you now that a panorama does not give justice to the beauty and the amazing feeling you get when you have made it to the top, let alone a 2 inch by 2 inch square on Instagram.
When I arrived at the top Cola and Jeff had already walked around and took in all the vantage points. I joined them as they were shooing away some overly friendly chipmunks with a hankering for trail mix. Shortly after I reached the summit, a man in his early thirties and his father found the top. He asked me to take a video of he and his father with his monstrous camera and then we conversed for awhile. John is a film editor living in Los Angeles, and as his father sat and relaxed with his hat shielding the sun from his face, I learned about a new Mercedes commercial he had worked on and a place in San Francisco that had the best burritos. His father would chime in every once and a while with a funny quip now and again, but he mostly sat quietly. We spoke of everything from my health, to his passion projects and even the old ladies in Vegas who sit on their scooters from dusk till dawn playing slots, only retiring when they run out of money or when their mountain of chain smoked cigarette butts avalanches out of their ashtray.
Gila National Cliff Dwellings was a fascinating place. We were able to see how and where a civilization had lived for a generation. The homes built into the side of the caves along the Gila River supported the Mogollon people during an intense drought. The dwellings had different chambers for tribal gatherings, preparing food, and living in. The most interesting part to me is how the ranger felt obliged to tell us that many of his facts, were merely his opinion. These people lived so long ago that it is challenging to know exactly what they had done or how they had lived. The only thing historians and I alike are sure of was the fact that these people were hard workers and gifted architects for their time. They built a home for their society that has withstood the test of time, and it was very impressive.
Though they probably were not direct descendants of the Mogollon people, our next destination involved a current tribe of native peoples, the Havasupai. It was rather interesting to see the differences between the civilizations. The main source of revenue for the Havasupai people is tourism, which was why Jeff, Cola and I, among many others, were there. Thousands of people a year make the trek down to the most beautiful waterfalls I have ever seen. The falls are located at the bottom of a canyon, ten miles from the trailhead located on the Hulupai Hilltop, which is just west of the Grand Canyon's south rim. The Havasupai provide a number of different ways to get to the bottom of the canyon, the most luxurious way is to fly a helicopter down and then sleep in the lodge, but people also ride mules down (and have their bags brought down by them too), or the third option is to hike and camp (which was the route we took). This would mark my first real experience with my backpack (actually it's my brothers but I swapped him a golf bag for it), lugging my camp around for ten miles in the desert heat.
The hike down is not bad. The most interesting part of it for me (besides the gorgeous crystal blue falls) was the Supai reservation which was on the way to said falls. It was quite different from the Mogollon cliff dwellings. The farms, which were shacks with some land, were separated by barbed wire fences strung between branches. There was a sign advertising a peach festival in August, but I saw no crops. I am not sure how anything grows in the sandy bottom of that desert canyon. There were horses and wild dogs everywhere though. On the hike down to Supai there were mule and horse caravans carrying visitors and their luggage through the canyon (at least one every mile) . They were followed by a Havasupai cowboy and usually one or two dogs and they would probably run you over if you sat in the middle of the trail, but I never tested them.
On our way down to San Antonio we stopped at the Hamilton Pool Preserve, a neat cavern with a waterfall that we hoped to swim in. Unfortunately the drought that the area has been in caused bacteria levels in the stagnant water to be too high for swimming. We still hiked out to see the cavern, the trickling waterfall and a river that we actually could swim in. We caught a turtle and then ate a delicious picnic of left over barbecue from Sue Ann and Gary, and were on our way to San Antonio.
Unlike New Orleans, San Antonio was a little more my speed. First, on our walk to the Alamo for some Texas history we noticed the city itself was very aesthetically pleasing. It is littered with fountains, and a man made river runs through the city center. The banks of the river are lined with bars and restaurants (the Mexican food is outta sight by the way). Secondly, the city settles down early, and as I have mentioned before, I need my rest to function. By the time we walked to dinner around 9 everything was slow. At midnight only one or two bars on the river walk had customers. In New Orleans the party started at 11 and in Philadelphia thirsty Thursday is a huge drinking night (for college students at least). The next morning we departed for southwest Texas.
For the most part, our road trip is focused around National Parks, and that was why our trip to Big Bend was so momentous (for me anyway). The drive through west Texas is all desert and it takes forever. The hours in the car were worthwhile to see the Chisos mountains as we rolled up to the park. As we drove through the park we took in the wildlife, plant life and the amazing scenery. Cola was able to take the truck down a little windy road which led to a hot spring, which I relaxed in while Cola and Jeff climbed to windy peak nearby. Even though the bottom was gross and mushy, and an ecology class on a field trip warned me of the dangers of protists lurking in the spring, I was able to look past it and enjoy myself. How could I not? I was sitting in a hot spring on the Rio Grand looking out at a Mexican sun starting to set. It was amazing.
Nightlife is where New Orleans really shines. Sure the historical places, the cathedral, and beignets and coffee are all great, but the never ending party that is Bourbon St. is something all together different. Being from Pennsylvania, my friends and I were amazed that you could buy liquor in a gas station down south. In New Orleans it was taken a step further, my companions could wander the closed off streets with open containers as we went from bar to bar. I was surprised at how large the crowd was (it was a Sunday after all) and how many of the bars had live music. The streets and bars were littered half naked women painted silver, mechanical bulls, beads and drinks inside of grenades and fishbowls. I thought I had seen it all until Cola and I had to shoo away a lady of the night on our walk home.
The next morning began at the French Market were Cola and Jeff tasted a traditional New Orleans sandwich, the mufalletta. The sandwich was described to me as a stromboli with olives. The bread, a hard loaf with sesame seeds on it, held the contents of salami, ham, provolone cheese and olive salad. I was jealous when their hot sandwiches came out and I could see the melted cheese and greases coming out of the side, but I was saving my hunger for another New Orleans treat. After wandering the French Quarter for a couple of hours we arrived at Coop's Place. Coop's is a hole in the wall bar and from what I had read, had the best jambalaya in the city. My first sign that the joint would live up to it's reputation was having to wait in line to get in. Once we were seated I placed my order for one jambalaya supreme and did not have to wait long for the order to come out. The traditional Creole rice dish did not disappoint. The rabbit, pork sausage, shrimp and tasso (Cajun smoked ham) combined with tomatoes, onions and bell peppers was absolutely delicious. It was a fine note to end our trip to The Big Easy.
The next two days were our first camping days. We spent the first night in Sam Houston Jones state park, which is a Lousiana swamp. Needless to say, the mosquitoes were awful and it was ever so muggy trying to sleep in a tent with two other guys. The second night we camped on the Gulf of Mexico in Texas, which was awesome (yet still infested with mosquitoes). We met some really great people including a middle aged couple who helped us figure out my grandfather's stove I had brought along (for mostly boiling water, and yes Dad, I forgot your tutorial) and lent us some bug spray. We also met a cyclist who traded us stories about his years as a bush pilot in Indonesia for beer and burgers. After our night on the Gulf Coast I had created a hypothesis; mosquitoes love when you have low platelets. I could have played some crazy connect the dots with my mosquito bites after our first days camping.
If you ask me how I am doing, I am likely to tell you exactly what's going on in my life. Small talk has never been a strong tool in my arsenal. For some people, it is too much to hear about upcoming issues that my health may present me and it makes them uncomfortable or even upset, which is not my intention. It's just such integral part of my life and I think it makes me an individual. Obviously its not my conversation opener with strangers, but if I The serious conversations about my well being are also paired with jokes. Those who laugh at jokes about my medical status usually become great friends, but my closest of friends make jokes of their own. One of my closest friends, Kellen, went down to South Carolina for school and he was gracious enough to house us the first night of the road trip.
Since Kellen has gone to the University of South Carolina, I have had the opportunity to become close enough with his friends down there to consider some of them amongst my best, including his girlfriend Kelsey. She took us into her home while her boyfriend was in class. Columbia is a college town, and we did what many college students do on a Friday there, go barhopping. While my friends drank, I made a valiant attempt to dance (I never know what to do with my feet). I met some friends of Kellen and Kelsey that I remember meeting on Skype freshman year, jammed to some 90's tunes, saw my first all night bar and eventually drove home at 4am (cirrhosis makes me a very good designated driver).
Jeff, Cola (my road trip companions) and I stayed in Columbia until late the next day and planned to drive through the night to New Orleans with a little nap at a road stop along the way. When we pulled off at a Mississippi rest stop I was way too amped about New Orleans to sleep (actually it was definitely the coffee that had me so wired), plus Jeff had slept the whole way and was ready to drive. After a short stop in Biloxi to watch the sunrise on the Gulf we were in New Orleans.
It has become apparent over the past few weeks that my friends and I are becoming older. Many of my friends are graduating college and entering the job market, another one of my friends just had her first child, and I just embarked on what I am hoping will be the journey of a lifetime. It's ridiculous for me to think that this time last year I was spending countless hours waiting to get the final verdict on my diagnosis. My life has been constantly changing since then. I cannot wait to see what the world has in store for me this summer.
I will not be graduating until next spring. I like to refer to my ninth and tenth semesters at Temple as my super senior year. Career paths have not been on my mind. I still have time to think about my post collegiate life. I have been thinking about my health more and more though. All the doctors appointments I have had recently to make sure I am healthy enough to go on this trip have led me to one conclusion: there are no cookie cutter/textbook predictions for fontan patients as they enter their late twenties.
Each case is different. I have been reading studies as of late to see what the future may have in store for me. I can only use one word to describe what I have read and that is frightening. Forty Years of the Fontan: A Failed Strategy by Dr. Jack Rychik made me aware of the statistic that one in four fontan patients will die before they are thirty. I feel great at this time and I will not live in fear of numbers, but I do not want to be naive about them either. My CT scans showed the beginning of cirrhosis last year, which I discussed in an earlier blog. The new CT scans I have had since show it worsening (my liver function remains normal which is a plus)
A few weeks ago my friend Cola and I became junkies to the magical camping mega store known as REI. I cannot speak for Cola, but I was destined for addiction. It lives in my blood, courses through my veins. My father and my uncle are both life long members. They spoke of the store as if its entrance were through a secret door in the back of an old wardrobe. I had been there before, but I had never actually needed anything. I went to see if my father would spend any of his dividends on me. When Cola and I went the first time by ourselves, we were not prepared for what was to come. The staff’s onslaught of information was too much for our inexperienced minds to handle. It was overwhelming at first, but they were gracious enough to dumb it down and explain to us what we should be looking for. After several journeys to their Conshohocken location, we had all that we needed.
Testing the gear was our next project. As often as we can, the road trip crew and I go to the local park to muddy our boots and let the backpack straps find comfortable locations to hug our love handles. The first time Cola, my brother Adam, my father and I went together. My father tells me the best way to train are hills, and there are plenty of them around my neighborhood. We started on an incline, and my father said, “There were times when we (he and my uncle Pete) would only be going a mile an hour, and people look at me like I’m crazy when I tell them that. It does not matter how slow you go, just try and keep your heart rate low…”
My father’s voice trailed off as I concentrated on climbing the hill that loomed mostly ahead of me. The advice he had been spouting out then, I had already heard before. One needs to listen to his body. Sure it applies when climbing a hill, if you huff and puff your way to the top, you will burn yourself out. I had learned my lesson elsewhere though. Cancer had taught me that.
“ There is no better dance partner than a mop, you always get to take the lead.” - Opa
I have some choice words to describe my Saturday and Sunday morning activity – and none of them involve any rug cutting. I have been working at my family’s restaurant since I entered high school. I am employed at a number of positions, most frequently as a cashier and a janitor. I never went in during operational hours when I was diagnosed and going through treatment. I wanted to work, but I didn’t want to see anybody. The questions about my general state of being got old enough hearing them from the people I see everyday. If I added all the questioning of the regular costumers and employees, I would have probably gone insane.
Cleaning is different than cashiering. I usually see three people, my father, my Oma, and Werner, who is an ex baker who helps janitor and makes the strudel and spätzle. Sometimes I saw my Opa’s friends who still come in every Saturday, but I mostly worked on Sundays. I enjoy this menial labor because it gives me time to think. I can throw on my headphones, run through the repetitive motions and be alone with my thoughts. It was, and still is, a kind of therapy for me. But now, mostly, it is a way to earn cash for my road trip.
Last week I was on my spring break and was fortunate enough to be able to go to Stuart, Florida with my family.
We had an amazing time. The men in my family are nature fanatics so we visited the Everglades. The wildlife that resides in the swamps attracts all kinds of visitors. We were happy to be among the crowds watching the alligators sun bathe and the hideous buzzards circle the skies as they scavenged carcasses. Though the buzzards landed too close for my mother’s comfort on many occasions, we all enjoyed ourselves there.
The rest of the trip we spent in and around the resort. We made some friends at the hot tub, and even though they were Mets fans, they were still pretty cool. On our visits to the beach my mother collected shells and I got some terrible sun burn. The sun has never been kind to my fair skin so at least I had expected it. I tore through the first Game of Thrones novel and had lofty aspirations of finishing the second one before season 3 starts March 31 on HBO, but those dreams have been dashed since then. My brothers and I fished one day, but it was just another day in the sun for me since nothing tugged on my line. Two manatees swam in front of my brothers while they fished. It made Adam’s day and I was jealous I missed them. My father gave Paul and me valuable critiques on our golf swings while we hit golf balls at the hotel’s lake driving range.
Last year I spent so much time researching about, saving money for and eventually spending money to book campsites for a month long excursion through the United States. It was a wonderful, approximately 9,000 mile long venture that had my friend and I hopping from national park to national park with a few cities sprinkled in. I had all the greats included, but as we were looking to purchase a used automobile for our journey, we had a little hiccup in the schedule. My lymphoma diagnosis and treatment coincided with the road trip, and unfortunately had to take precedent. It was the biggest bummer of my illness. My mother knew that the cancellation was going to be the biggest let down for me. Right when the radiologist told me at Abington Hospital that he thought it was cancer, my mother grabbed my hand, started crying, and said, “don’t worry, you’ll go on your trip.” I called and told all the National Parks where I had booked campsites at the sad news about my cancellation, promising them that I would return the next year.
Well that time has finally arrived, and this year it’s looking even better than last. I have had more time to plan and speak with my backpacking and traveling consiglieres, my father and my Uncle Pete, who had advised me on where to go and what to see, as well as what to pack. Probably the greatest improvement from last year though is the mode of transportation. My friend is planning on purchasing a new double cab Toyota Tacoma for the excursion.
The trip itself hits all the big national parks and some cities as well. We will see Bourbon Street in New Orleans, the Alamo in San Antonio, the Hoover Dam outside of Las Vegas, and Alcatraz in San Francisco. However, the majority of the trip will be camping. My father has told me only amazing things about these parks, and I will finally behold their glory for myself. We will hike to the bottom of the Grand Canyon, scale the half dome in Yosemite, see Old Faithful erupt in Yellowstone, and step foot on glaciers in Glacier.



Sara Tasian, M.D., is a pediatric oncologist at the Children's Hospital of
Philadelphia. She received her B.S. and B.A. from the University of Notre
Dame and her medical degree from Baylor College of Medicine, then trained in
pediatrics at Seattle Children's Hospital/the University of Washington
and in pediatric hematology-oncology at the University of California,
San Francisco Benioff Children's Hospital and School of Medicine. She
specializes in the clinical care of children with leukemia and lymphoma
and is a translational high-risk childhood leukemia researcher..