Archive for June, 2008

Ten Years June 27, 2008

Sunday, June 29th, 2008

Dear Friends,
Back by popular demand, I am finally writing on this blog again after a break. It wasn’t really a break; it was more that I was doing frenzied catch-up with emails, and spending my time organizing my house and training for the Transplant Games, which are in 2 weeks! So, I didn’t have time to blog… So much has happened- I went to Philadelphia with Ana for another CF education day talk, I have been training at the track twice a week with my friends Tom and Tiffany, I’ve been practicing pipes like crazy(two weeks from now I will have finished playing my bagpipes at the Donor Recognition Ceremony at Heinz Hall in Pittsburgh, Pennsylvania!

Anyway, It has been an eventful few days. On Tuesday night, after my important bagpipe band practice to prepare for the July 4 parade in Piedmont, I took at 10:30pm flight to Las Vegas, Nevada! I normally hate Vegas, because I detest gambling and that is where my childhood best friend Karen died (it’s in the book). The last time I flew into that airport, Karen greeted me and snapped photos for our last summer vacation together in 1990. So there are a lot of bittersweet memories.

Anyway, I stayed in the gorgeous Venentian and kept thinking, “Why isn’t Andrew with me?” We could have renewed our vows in Vegas! A drug company invited me to speak on Wednesday morning, and I squeezed in the 12 hour visit with my busy week. I stayed in a gorgeous suite and felt like a queen for my 6 hours of sleep! I spoke at 8am and it was well-received. It is so nice to have a chance to say THANK YOU to the people who work so hard to get our drugs out to help us live. Novartis is the title sponsor of the Transplant Games so of course I went crazy with effusive gratitude for their generosity. I played my bagpipes for the group just for fun, and though the reed didn’t cooperate at first, it sounded ok for an out-of-tune, not-warmed up pipe.

When I returned to my room, I received a call from a dear friend to inform me that my friend Siobhan had lost her battle to CF. We cried together and felt it was so unfair for this 26 year old to not have a chance to breathe freely. Siobhan was a girl I met when she was 9, at CF camp. She stopped coming in the last few years because of MRSA, but we spoke occasionally. She started calling me more regularly after her good friend, and mine too, Kathy, died last September, and she wanted someone older with CF to confide in. How privileged I was that she chose me! We talked about her beagle and my basset beagle, and her travels, college graduation, etc. Two weeks ago we talked, because she called me to say she was on the top of the list and really nervous. We spoke about her goals and dreams post-transplant, how she wanted to work and become independent and take care of herself. She had such a hard life but had a wonderful foster family who loved and provided for her in material and immaterial ways. Last weekend, Siobhan had a lung bleed, was put on bipap, then the vent. She was on the top of the list but couldn’t hold out. I haven’t seen her in person in a very long time due to MRSA, but it breaks my heart that she is gone. It just seems so UNFAIR. Of course, I wonder why I was so lucky to get called when I was on a vent, and that this miracle should happen to everyone in those circumstances. She had such a hard life, a thousand times harder than mine, and if anyone deserved some redemption from suffering, she did. I know I’m rambling, but it is so sad when someone in our shoes- with CF- doesn’t make it, doesn’t have the chance to have the life we are enjoying post-transplant.

Anyway, I rushed out of Vegas and flew to Los Angeles, where my husband Andrew picked me up from the airport. We had planned to get away for a few days for our ten year anniversary. Can you believe we are celebrating ten years??? I cannot! Time has flown by. We came so close several times to not celebrating another anniversary. Again, I feel soooooo privileged to celebrate this moment. It feels like a rare event to be so happily married for this long, and for us to still be together physically.

Andrew and I celebrated by going to the George Michael concert at the Forum in Inglewood, California. The last time I was there was June 1990 for Phil Collins with Karen. Andrew and I indulged in heavy soul food at the fabulous Soul Food Kitchen on Manchester before the concert, and then rocked/swayed the night away to this sexy singers’ voice. It was a fabulous concert, with amazing stage lights and screens. We went to bed late and I was exhausted.

The next day Andrew and I met some colleagues and friends, including one who is helping us secure a Japanese publisher for our book- please keep your fingers crossed. We napped in the afternoon like an old married couple, and then met my wonderful parents for a luxurious meal in Century City. I must’ve consumed 4000 calories that day! We returned to our luxurious hotel in Century City, and crashed out again for a long night’s sleep.

On Friday, June 27, 2008, was our actually anniversary. I remember my wedding day exactly- the time of our photos, when we did the makeup, etc. I was surrounded by my best friends in life- some of whom are no longer with me… but some of whom are alive and well, like Ana, Michelle, Nahara, Becca, etc! Thank God for transplantation! I’ve met so many more incredible people in the last 10 years, and my pool of friends just keeps growing. How privileged!

I gave Andrew a photo book of our top memories of ten years. We’ve seen so much! In just 4 years, we’ve traveled to two Transplant Games together, to Spain, Japan, Norway, Austria, Germany, and hiked the Grand Canyon, Half Dome, we sang in Carnegie Hall together, we did the Seattle half marathon and 199-mile Relay together… I get tired just thinking about how much we’ve done! It is so much fun to look back and reminisce. We saw our wedding video and marvelled at how skinny Ana and I were- and Ryuta (my brother) and so many of my other friends! Ten years of weight gain!:) On Friday we “relaxed” all morning and then worked out in the gym, doing a 5K run on the treadmill, weights and then I swam a bit. Then we went out for a nice Indian lunch near the Westside Pavilian. I have so many memories of each corner of the LA. That mall is where I had my last meal with Akemi and Naomi, my two best friends who left for Japan in 1986. We then saw a film called “The Garden” as part of the LA Film Festival. It was suuuuch a fabulous film and I totally recommend it to anyone with social conscience who is interested in urban planning and social justice. After the film, we returned to the car and did not find it. It had been towed! After calling the posted number, we learned we had 20 minutes to get to the towing center 1 1/2 miles away. Andrew started running down Pico while I called a cab and tried running in my impractical feminine shoes. That’s why I hate being feminine- pumps and heels are not meant for active people. I trotted down Pico trying not to sprain my ankle, until I found a cab, and picked up my sweaty running husband near Barrington. We picked up our car 5 minutes before they closed, after paying $150. Then we raced to our dinner reservation at Spago’s, a fancy restaurant in Beverly Hills. We actually made it, only a few minutes late! We were so grateful that our car impounding didn’t interfere with our plans:).

Our meal at Spago’s, Wolfgang Pucks’ restarant was amazing. We had the tasting dish and had about 7 different plates- fish, decorated with quail egg, sorbets, mascarpone cheese pasta, lamb, and scrumptious strawberry kaiserschmeren. I love to eat and this food was the best I’ve ever had. I also sat across from Jason Priestley, which doesn’t matter to me, but it was cool to see someone familiar.

Our evening ended with a bottle of champagne in the hotel room. I could only handle 2 glasses before feeling miserable. Alcohol and I don’t go together. I skipped my sporanox that night for obvious reasons! Andrew presented me with a gift- a dedicated brick at the Civil Rights Museum in Memphis, where Ana and I loved to visit in May.

Yesterday, we slept in and then took a short walk to the Hollywood sign while I played my bagpipes. It was a warm day and I had never been to the nicer neighborhoods in Hollywood. We also drove by Andrew’s childhood home in Northridge, before picking up burritos for the 6 hour drive home. We arrived at home safely- thank God- by 8pm for a home-cooked meal.

I am so grateful to be married to my best friend, and it makes such a difference to slow down and spend quality time together. It is hard to escape our rat-raced lives but it is so necessary for our soul connection that couples need, even 10 years after marriage.

To all of you who’ve been part of my married life, I am so grateful for your support. I guess now the whole world knows what kind of man I married because of the details in the book. I don’t know why I’ve been so lucky. The love- and random compatibility- just happened.

I hope you all had a great June and I wish you health, good food, safety, and gratitude for being alive this summer.
Love to you all-
Isa

Eight Years

Monday, June 16th, 2008

It has been a few weeks since we’ve posted- time flies when you’re unwinding from a long trip. Although my mind is saturated with memories, the piles in my house remind me that it was time to come home.

Please join me this weekend in remembering my donor James, who, 8 years ago on June 14, 2000 gave me the gift of life. He, like so many other organ donors, had his life cut short for reasons we will never understand and left his family and friends mourning his loss and remembering his  life and who he was. I am privileged to know James’ family and join them in spirit this weekend to remember the events of 8 years ago. His loss was like the rain that sprouted a new tree for others and my life has been never been the same.

So I pay tribute to him today, although it is bittersweet as it is actually the first of my transplant anniversaries that I actually don’t have his lungs within me. I still honor and celebrate him no matter what and thank him for his breath, his life, his energy. I  commemorated the occasion by swimming in the morning and going on a kick-ass 14 mile bike ride that left my thighs burning and my new lungs stretched out. (yes I did this with the damn cast on).

Ah - to be breathless from motion is the best form of breathlessness there is.

As June is half over, I welcome the warmth, I enjoy the sun and the outdoors and I celebrate how different things are today than they were a year ago.

Please join a glass with me as we toast to James ….

 I hope this finds you all healthy and enjoying the summer and anticipating some travel plans of your own.

Tomorrow I return to work after being on disability for 13 months.  Back to the working world- both a privilege and a dread. It is a PRIVILEGE to be well enough to return to a job I love but a dread at the early mornings and inflexible schedule. Back to a reality that  almost everyone experiences- Monday morning at the office. But I’m grateful to return to my former part-time benefited position in prenatal genetic counseling- grateful to stimulate my mind, work with my dear genetic counseling colleagues and give back what little I can to others. Life goes on, thankfully.

Hugs to all my friends and bloggers,

ANA Stenzel

5/26 and 5/27: The Last and Best Days of our Book Tour Road Trip

Monday, June 9th, 2008

5/26/08
Monday
Ana and I woke up early after a night of winds and heavy rain. We remained cozy and dry in our tent. God bless REI! It was chilly but several days without a shower forced us to do just one thing. We had the luxury of a spigot right next to our campsite so we turned the water on and dunked our heads. It was as good as an expresso to wake us up for the day! The lather felt good on our long tangled hair. We used the electric socket to boil water in our hot pot for tea - what camping posers! But we needed something hot with wet hair in the cold morning. Then we packed up quickly and took off around 8am, without saying goodbye to our kind neighbors, still tucked into their tents. Happily, it wasn’t raining but promised a grey day. We ate muffins, bananas and dried fruit in the car while we drove 80 miles to Great Basin National Park.

On the way, we drove through a “Desert Experimentation Station”, and hoped that the land we were sleeping on wasn’t teeming with radiation! We slowed our cars for cows walking aimlessly on the highway. We took photos of run-down pioneer-day log homes surrounded by tangled barbed wire. We made a u-turn on highway 21 to stop to watch a den of kit foxes roam the desert land. We entered Nevada after Garrison, in the middle of NOWHERE. Because there was no one else on the highway, we slowed down and stopped to take a photo of the sign at the state border. We entered our 24th state! We officially have visited half of the lower 48!

Ironically, after leaving the pious, family-oriented Mormon state, we entered Nevada, the lawless land. We got into a tiff with a camper-trailer who threw a beer bottle out of the car. Okay, I admit, we shared the finger. On the highway, we saw signs that said “Do not pick up prisoners” and “No shooting from freeway.” We didn’t feel very safe.

We made our way to the Great Basin National Park’s visitor center for another stamp in our passport and a quick video. We had no idea what to expect except flat nothingness but boy, were we surprised! This park lies in the South Snake Mountain Range. Apparently Nevada is not just a vast basin, but consists of 200 basins surrounded by mountain ranges. A basin is defined by a flat plateau with no water running through it. So the basins in Nevada are extremely dry and inhospitable. But Nevada is the most mountainous state in the US! There you go, West Virginia!

Ranging in elevation from 5,000 - 13,000 feet, Great Basin National Park contains deserts, playas, mountains, rock formations, fossils, springs, caves, creeks, and even a lone glacier. This gorgeous park has 5 different ecosystems in 8000 feet elevation change. It is home of the famous Lehman Caves. As usual, we were like kids in a candy store, asking the ranger all kinds of questions and trying to plan the most effective day to see it all. First, of course, we had to purchase our magnets and patches.

First, we drove up the 12 mile scenic drive from 6000 feet elevation to 10,000. Ana and I got all excited in the car and praised God for this beauty! In one direction, we could see the flat brown basin where we’d come from. To the left we could see snowy Wheeler Peak, the 13063 foot peak, half covered in fog. It enticed us with a climb, but not this time of year! There was 4 feet of snow at the end of the road and we parked at the campground. We donned our rain pants and rain jackets over our down jackets. Ana put on her waterproof sock, and amidst a heavy blizzard, we set forth for an adventure. The ground was blinding white and we carefully followed footsteps in the snow. We breathed in snowflakes. The trail to the rare bristlecone pine forest was under the snow so we had to rely on the footprints. I was very eager to see the Ancient Bristlecone Pine Forest. I had seen the California Bristlecone forest east of the Sierras last June with my buddies Tom and Dave. This is the second place in the country where they grow. Bristlecone Pines are amazing because they are the oldest living creatures on the planet. Some living trees are 4000 years old! Isn’t that humbling? Because of the harsh climate, there are few pests that destroy them. They are especially adapted to low moisture, high altitude and extreme temperatures. That is why they are extremely slow growing. I was on a mission to hike in the snow so Ana too could stand beneath an Ancient Bristlecone Pine and feel the smallness of our living time on earth. We were so happy we exclaimed “Isn’t this amazing???” over and over again. We didn’t know if we’d died and gone to Heaven, if this was real or we were dreaming! From hot Albuquerque to lightening storms in Illinois, from muggy North Carolina to the Nashville rainstorm, and now to a full high altitude blizzard– in Nevada!!

With good waterproof shoes we started to walk through the snow. We passed a full creek that rushed through white rounded banks of snow. Everything was so crisp and clear. There is nothing like rushing water along snow! Of course, we breathed heavily and stopped regularly to catch our breaths. Soon, I peeled off my down jacket and hat. This was a workout! My pace was obviously slower than normal, given the 10000 feet altitude. Ana was so strong, as usual, despite her claims of being out of shape.

We passed snow-covered juniper and pine trees all over. Once we passed a sign at snow level that directed us to the Bristlecone Pines, only 0.7 miles away. The stubborn snowstorm persisted and eventually, after about a mile, I came upon a rocky path and the footsteps disappeared. While Ana waited, I wandered up and down a hill looking for the next tracks. I knew we were really close to the Bristlecone Pines. But the lack of tracks made me nervous. It was hard to walk in deep snow and I was getting tired. We couldn’t even see the faint ski tracks we had seen earlier. Rather than risk getting lost, we turned around, and followed some other footsteps to a frozen lake called Teresa Lake. At the lake there was a bitter wind, and I threw a few stones over the lake. They bounced on the surface and slid across. To me, this was a novel opportunity, and I delighted at watching the frozen water resist my rocks. Eventually, we returned to the car. I was disappointed not to see the legendary Bristlecones, but content with a good 2 mile hike in the snow. On the way back, Ana said, “I can’t feel my toes.” She had been a good sport through all of this, and finally we stopped so she could take care of her foot. She sat on a log and I gave her my ski cap. She wrapped it around her toes and tied a plastic bag or two around her whole cast. “Much better!” she said, and we were off again. Nothing stops her!

We rushed down the mountain for a 2:30 tour of Lehman Caves. Absalom S. Lehman lived in this area as a rancher and farmer, and discovered these caves around 1882. Our ranger led us for a 3/4 mile walk through brilliant caves with spectacularly detailed stalagmites and stalactites. Subtle lights put in by the NPS inside the cave offered a glimpse of all the details of the formations. It was again a chance to wonder with amazement at our earth’s beauty, and at God’s creation! We both wore N95 masks to protect from the bacteria/mold inside. We don’t care if people stare- and ‘don’t ask, don’t tell’ was our policy. Lehman Caves have very rare formations called shields, diagonal plates that grow contrary to gravity or reason inside of the caves. The ranger pointed out special rooms, like ‘the wedding chapel’, the ‘dance floor’ and other places where pioneer visitors would hang out. Unfortunately, the early visitors also broke off stalagmites/stalactites as souvenirs so there was a lot of damage. Ana and I were in awe of the gorgeous rock formations. We didn’t even touch anything and it was still amazing. Sad that the earlier visitors didn’t recognize that future generations would’ve wanted them to keep everything as is.

After the cave tour, we went on a short nature trail on top of the cave, looking at the signs for the various plants on this dry land. There was mormon tea (ephedra), sagebrush, prickly pear cactus, and more juniper and pinyon pine. Who would’ve guessed this simple land covered those decorative caves underneath? Then I wanted to get one more hike in to fulfill my obsession, so we drove to S. Fork Baker Creek trail. First we stopped at Upper Pictograph Cave near the Grey Cliffs to see some petroglyphs/pictographs created by the Fremont Indians in the early 1st millennium. Amazing this dye/paint can last so long with this harsh climate!

Then we parked at Baker Creek trailhead, and I left Ana for a 3.1 mile “quick” loop. Since I knew Ana was waiting, I rushed up the trail but found myself panting and needing to stop every 50-100 feet. We were at 8000 feet and the trail was going to 8600 feet! I always get paranoid that something is wrong when I am so short of breath, but I think here it was normal! I challenged myself with speed and soon was covered in sweat. It must’ve been 40 degrees, because I could see my breath and soon I came across patches of snow. I peeled off my layers and walked in a “Got Corn?” t-shirt that the Phelan family gave me from Nebraska. Oh, I love hiking alone! Like I said earlier, it is like being alone with a man- completely and totally monopolizing a lover. I could watch everything and soak the world in with all my senses. I could hear the heavy creek rush next to the trail, feel the crack of snow under my feet, stop and watch the tiniest fragment of green coming from the buds in the aspen trees! There was so much detail in this forest if I only stopped to pay attention. Talking with someone would just be a distraction. How my own voice clouds the rest of the voices out there in nature! I loved being the lone human, because I was so not alone.

I kept rushing up the trail, feeling like my heart would explode out of my chest. I was really using Xavier’s lungs, and I am sure the animals could hear my breathing in the distance. It felt wonderful, though, because I was fully alive. As I climbed, I could see behind me was the valley where we’d driven through. Above me was a rocky mountain which could be accessed by the other trail. If only we had more time! Soon, I came to a flattened part of the trail and was rewarded by a magnificent meadow! Brilliant green lawn was cut only by tiny creeks that ran through it. There were three deer in the distance to greet me. They were startled by my presence and stood here, ears perked, just watching me intently. I tried to walk quietly while maintaining my pace. I always wonder when I meet animals if they represent the spirits of someone visiting me. We can’t prove or disprove that! I said hello anyway. Sure enough, the deer pranced away once I got too close. I found my way along the meadow and soon was deep in the forest, following the trail to return to the parking lot. This trail wandered through dense wet forests that kissed me with water drops. There were downed trees and snow patches I had to walk over. Then suddenly I’d come to a flat clearing where I’d be walking through sagebrush and dry grass. The temperatures were just as varied as the landscape. My late afternoon walk was greeted by sunshine! I felt so good, like I had died and gone to Heaven. I thought of the people I wished were with me– many of you reading this blog. You were with me, on that trail, witnessing this beauty.

The trail neared Baker Creek and I spend the rest of the downhill hike listening to the roar of this showcase of late spring snowmelt. The noise was so loud I could hardly hear my thoughts! But I welcomed it! Water is life force in this region, and a sure sign of another passing year, full of promises. As I came down the hill, I witnessed a few wildflowers and more signs of blooming aspen in the open areas. This was the best time of year to hike! How lucky I was!

I finally arrived at the car, finding Ana in the passenger seat. She was surprised it took me just 1 hour and 20 minutes for a 3 mile high altitude hike. She had just finished a 70 minute hike up and down the steep part I had ascended. Her foot was killing her but she was as high on life as I was.

I changed my shirt for obvious reasons, and at 6pm we left Great Basin National Park. “Goodbye, beautiful land!” we said, driving past the exit. We didn’t know if we’d ever come back here, since it is so remote. I felt sad, and started to wonder- what if I just stayed? What if I lived here? But it was time to go. We take with us the feeling of what a hidden treasure this place was. I highly recommend it to you.

Ana and I drove west on highway 6 until we got to highway 50. We recognized Hwy 50 from Lake Tahoe and knew this would take us home. It was also infamous for being ‘ the loneliest highway’ in the USA. We drove with few fellow travelers along the road. We feared scattered showers but the stubborn sun burst through the low clouds. We got nervous around 7:45, when we were driving in vast nothingness again. Luckily, we were blessed with a sign for ‘camping and fishing’ at Illipah Reservoir, somewhere between Ely and Eureka. We followed a dirt road for about 2 miles off Hwy 50 and came to a deserted campground. We were nervous but then saw one SUV from California in the distance, and felt some relief. It was getting late so we had no choice. The sites were actually nice, with a right angle wooden fence surrounding a picnic table and an aluminum ROOF over every campsite. There was no water but we had 2 gallons in the car. The one pit toilet was up the hill, but it was so remote we could use the bushes– or next to the tent… We were tough Germans, and we could handle this. We had to overcome our fear of lawless land because we had each other– and no other choice of where to stay. I pitched the tent, while Ana, like clockwork, heated the camp stoves and prepared our leftover dinner of beans, sausage, broccoli, the nice Utah family’s leftover chicken, and our precious pie from Capitol Reef Guifford House. We ate quickly at dusk and marveled at the silence and vastness surrounding us. Occasionally, we peered at our distant neighbor’s campsite to make sure we weren’t alone. We wore our headlamps and bundled up to beat the cold once the sun was down.

We stared at each other in amazement. It was just Ana and me and this world. We giggled at all we could do together, the adventurous spirits we shared and our voracious appetite to witness nature. It felt good to be all alone, just us, in the middle of nowhere. Today we saw our 5th national park in 6 days.

The clamoring of the dishes were the only sounds made for miles and miles. After dinner, I flushed my sinuses, brushed my teeth, and put away the stove materials. By the time we were ready for bed, the dark sky was lit up with brilliant specks of white clouds and needles of light. This was our last glorious view of stars in a dark sky. Oh, it was magnificent! If I wasn’t so exhausted and tired, I could have been up for hours just watching those stars move lazily across the sky. After the rain and snowstorms we’d see that day, it was amazing how clear the sky was that night.

We brought letters/cards, meds and water to the tent and finished up our chores in our cozy cloth cave. In our tent, Ana and I said goodnight to each other with a hint of sadness, knowing that this was the last night on our 40 day road trip. We couldn’t believe that our gypsy living was coming to an end; that we’d soon be back home, sleeping in our own beds for the first time since April 16.

5/27/08
Tuesday

As usual, our last camping night was interrupted. It is hard to describe what it is like to get up in the middle of the night to “water the bushes” when one is camping. Tonight, when all other sites but one were abandoned, I could feel the creepiness in the air as I tumbled out of the tent in the darkness. My joints creaked as I stood up and breathed deeply to witness the night. I calmed my fears by asking, What was there to fear? Creeps, thieves, rapists, bats, rodents with Hantavirus, mountain lions? Really, the chance of those things happening are minimal. Instead, I was greeted by crisp cold air and brilliant night stars. I gasped at the stillness of the night. There was so much activity in the night that I could not even sense. Even if I stayed alert and awake, looking into the brush all night long, my sensory skills are inadequate to take in the subtleness of darkness.

I woke again around dawn, just as a sliver of sky in the east was starting to glow with yellow and red. What a glorious welcoming to a new day! It’s like the universe is saying, “You’re alive and I celebrate with you!” This moment happens every day yet I rarely pay attention to it. Only my exhaustion and shivers pulled me back into the warm tent to bid farewell to this beauty.

We woke up early when the sun made its presence known on our tent, and because of loud blackbird chirping in the brush nearby. There was probably a nest, and at first we cursed the noise but then realized we were in their territory. Nonetheless, we felt relieved that we survived the night without any boogiemen harassing us. For breakfast, we finished up our last food items: tofu scramble with packets of instant oatmeal, mixed with walnuts, raisins and dried milk powder.

Then we head back onto lonely highway 50 for a 5 hour drive to Reno, through the Great Basin, which is a misnomer. As I said earlier, Nevada consists of over 200 great basins, flat land masses surrounded by mountain chains that feed snowmelt water into these plains. All of this land is extremely dry because of the rain shadow effect of the Sierra Nevada Mountains in California. We drove through flat basins and then climbed through a mountain pass, only to enter another basin and see another mountain range in the distance. The road was around 6000 feet altitude, and the mountain passes were around 7-8000. There was still snow on many of the peaks. In the basins, we passed miles and miles of sporadic ranch land with cows, sheep and horses. Occasionally we saw broken-down log cabins, sod houses and abandoned mines dug into the earth, of the pioneer days. We saw antelope in the distance, ravens and turkeys eating road kill, and glorious clouds hanging low over the black mountains. We went through bright sun and heavy rainfall. There were very few homes. Most of the land belonged to the Bureau of Land Management. I guess most of Nevada lives in Reno and Las Vegas! We’d see signs on the road for tourist attractions like a lake or dinosaur park that were 60-80 miles away. We passed the Shoshone Indian reservation and many state landmarks documenting the mining history in this area. We’d pass sleepy little cowboy towns like Eureka and Austin with saloons, cemeteries, and silver jewelry stores. Now we knew we were in Nevada because the towns had Methodist, Episcopal and Catholic churches in addition to LDS! Of course, we saw casinos in each small town.

The gas prices in these towns topped $4.15 so I refrained from buying any until we could get to Fallon, a larger city outside of Reno. But unfortunately, my gas tank emptied faster than expected, so when we had two notches left, I got nervous and had to stop at the next available gas station. We found the only gas station in “Middlegate”, proudly boasting their location “In the middle of nowhere.” The town sign said the population was 17. The station had old-fashioned hand pumps with rolling numbers and old wagons in the parking lot. A rusty model T Ford decorated the driveway, next to the sign for cattle crossing and the 3 mailboxes of this town. Down aways was an outhouse with a moon carved into the door. There were rundown mobile homes and RVs in the distance. I entered the “restaurant” to inquire about gas payment. It was dark with a pool table, a buzzing neon Bud light sign, antlers, horseshoes and John Wayne posters on the wall. Two men with cowboy hats sat at the counter, eating burgers in silence. One man, also in a cowboy hat, served them. Another man stood in front of an old ice machine. Nothing moved except for the rotating ceiling fan above those men. By the looks of this bar it seemed that a female hadn’t entered in awhile. I asked for the restroom and the man at the ice machine just pointed. Next to the restroom was a gun on a rack with a sign that read, “Our 9-1-1″. In the bathroom was an antique sign that read “Wanted: Dead or Alive” and a framed 1903 newspaper article about vigilantes. Another sign read, Outlaws and loose women are known to visit these premises. It was eerie, like a scene straight out of a movie. This was truly the wild west! I inquired about gas and was instructed to pump first in a flat, unfriendly tone. No eye contact. Unfortunately, the gas was $4.50 a gallon! In this isolated town, wouldn’t people be hungry for human interaction? Or maybe they are conditioned to not engage with others, especially newcomers. We paid, dumped our garbage from the campsite, snapped a few photos and left.

When we first got onto this lonely highway 50, for fun, I decided to count the cars we’d see. After another hour or two on the road, we finally reached Fallon and then the bustling city of Reno. Overall, we counted 140 cars in nearly 600 miles!

In Reno, our cell phones woke up after 5 days in the wilderness. We wanted to stop to see our friends but knew timing would be challenging. Instead we sped ahead, entering hard rain and fog through the mountains. We passed Lake Tahoe and we knew we were back in California when we saw an In & Out Burger. We passed cars with California license plates and bumper stickers that said, “Go Green” or with red circles with a W crossed out.

We drove further west on highway 80 down to Sacramento. The sky cleared up and we saw only blue. We knew we were in California when we saw the signs for fresh produce and bought freshly picked peaches, corn, cherries, and apricots from the Central Valley. We saw people talking on their cell phones while driving. We saw that the carpool lanes required 3 passengers. We saw a whole lot more hybrid cars. The bathrooms had toilet seat covers. Gas was over $4 a gallon. We saw golden dry hillsides. We saw graffiti, bilingual signs, aggressive drivers, health clubs, recycling bins. We were back home in California. Best of all, we saw Asians! Lots of them! Hallelujah, we were home.

Of course, there was more concrete than what we’ve seen in days and the landscape was now dotted with new developments and business parks. The bumper-to-bumper San Francisco traffic welcomed us back to the Bay Area. We drove over the San Mateo Bridge, nostalgic over the silhouette of San Francisco in the distance. I put my hand on Ana’s knee and we listened to the Indigo Girls’ song, “The Power of Two,” feeling tremendous gratitude for coming home safely together. To paraphrase Matthew, with God and twins, all things are possible.

Another Indigo Girls song we heard ends with the line, “The greatest gift is to know love.” A true gift of coming home safely is to know we will land in the loving arms of our partners tonight. How blessed we are to be welcomed home. All of our adventures would mean nothing if we had no one to share our stories and photos with. I feel like the characters in the “Bucket List.” There is a time for exploration and seeing the world, and there is a time to come home and reconnect. Our absence makes our love stronger. Andrew is eager to see me and so is Rupie. I know home is where I belong.

As we saw the signs on highway 101 for Redwood City, California, Ana and I breathed a good long sigh of relief. We made it. We survived our road trip! We pulled into our driveway, and our odometer logged 9960.5 miles! Our little Honda crossed the desert, countless rivers, the Rockies, the Continental Divide, drove in thunderstorms and lightening, through miles and miles of the Midwest, along the Atlantic Ocean in Virginia, through Baltimore traffic, along Pennsylvania Avenue in DC, along the Blue Ridge Parkway and Natchez Trace Parkway, the Ozark Mountains, on dirt roads in the Southwest, and it crossed the welcoming Sierra Nevada mountains in Reno. God bless Honda!

To say our car is dirty is a gross understatement! Our windshields are filthy. It has been several weeks since we have been able to see the back seat. We have filled up one half of the backseat with souvenirs, including 6 pillows that I bought in Arkansas. Our food bag is almost empty except for one more packet of tuna we just couldn’t consume.

Ana and I entered my home to greet a loudly barking, hyperactive, wiggling basset beagle dog. There was a lot of cooing and gooing, and great emotion expressed by both species. It took an hour for us to unload our car and create a mess in the office. Rupie smelled everything. She even jumped into the car to sit and check out what was in there for her. The moist tent and sleeping bag were hung out to dry. Laundry piles were started. By the time Andrew came home, I was ready to give him a bear hug.

On our trip, we’ve encountered a fortunate few of the following events: We’ve only had one oil change, one drive through a Midwest lightening storm, one hydroplaning experience, one horrible drive through dense fog, one trip to the ER, one stop by the cop for speeding, one really dumpy motel stay, one fender-bender on the bridge over the North Platte River in Nebraska, one parking ticket, one cold between the two of us, and one 8 ounce Purell and sunblock used up between us. We can say we’ve done once-in-a-lifetime things, like driving the Chesapeake Bay Bridge, going to the Grand Ol’ Opry, seeing Graceland, going up Pikes Peak, boating down the Colorado River, or making a snow angel on Wheeler Peak in a blizzard.

I reflect back on Ana’s and my dynamics. Obviously as twins, we are extremely compatible in our traveling style. We are perfectly content going-going-going, rushing and eating in the car to make it to the next attraction. We are constantly in a hurry to see the next thing, even if it means eating lunch at 3pm. We are frugal and make do with simple meals and snacks, or tap water from public restrooms. We can pass on a hair wash and ’shower’ with wet-wipes. We don’t want the practicalities of life to stop us, even if it means doing laundry in the sink, flushing our sinuses in the dirt next to the tent, or doing aerosol treatments in the car. Ana kept up with my obsessive hiking desires by walking 4-5 miles a day with her cast! It was amazing to see her scramble over rocks unable to bend her right ankle!

We had a lot more nagging and bickering in the beginning of the trip, and as we became tourists at the end, we just glowed with love to be able to do all of these things together. In the tent that last few nights, we’d just hug and appreciate being alive together. Ana still thinks I’m a backseat driver, but neither of us could nap in the car because we don’t trust each other to drive without guidance. We helped each other with directions, documenting finances, preparing meals in the car, writing the blog and postcards, finding things in the chaotic back of the car, or organizing what tourist attraction to see next. Our famous lines to each other were, “Where’s my —?” When we’d stop to camp, we’d just get out of the car and without talking, one of us would pitch the tent, the other would start dinner with such unspoken efficiency. We truly are a team. We are so blessed to have life companions in each other, to both be off work at the same time, to both be welcomed so nicely by so many groups across the country.

I am so amazed that all of our plans worked out without a hitch. I expected some disappointment, changed plans, health diversions, but thankfully, none of that happened. I have a new appreciation for our country, the freedom of the road with automobiles, the struggle of economic opportunities versus natural preservation in rural areas. I vow to be less judgmental of how we humans use the natural world. In remote regions of inhospitable climates, I have no right to criticize people using SUVs and wanting a Walmart in their town. I cannot even judge casinos, my nemesis, when in fact, the economies in rural America are desperate for income of any kind. I have witnessed the American lives at stake if farming and jobs are taken away/outsourced. Truly, the survival of rural America is at stake.

My exposure to national parks’ geology and human history reminds me that we all exist in just a speck of time. Even if I live to be 80, it will be inconsequential in the lifespan of the universe. I am very much part of the natural world which comes and goes and changes. This perspective helps to make me take life less seriously. After 40 days of leisure, I find myself questioning how I am spending and will spend the rest of my time. Will I continue this hedonism or devote myself to service to others? I prefer the latter but enjoy the freedom to travel. My wanderlust has not been satiated by my 40 days and nights on the road, but rather, the more I see, the more I want to see. Like lighter fluid is squirted on charcoals, my travels fuel my fiery desire to see the world. I want to soak in more.

Through meeting countless families at CF events, I recognize the universality of the CF experience no matter where one lives. I am filled with great hope for the next generation of CF children, but also feel the pain and worry of parents all over the country because of the unknown path ahead. I truly believe more than ever, that “The Power of Two” story is really these families’ stories as well. The struggle goes on.

I confess that I’m cheating now. I am finishing this blog entry on Friday, 5/30/08, on the plane to Philadelphia for one more CF education day. This was organized by my friend Beth S. and I cannot wait to see her. Then our travels will be over until July. I have still not recovered from my high of traveling across the country. I cannot believe what my eyes have seen. I want to look up and see magnificent arches and brilliant stars in the night sky. But instead, I am back in civilization. I went to the dermatologist and transplant doctors on Wednesday, spending 6 hours at Stanford. Fortunately, I had 30 minutes to run at the track with Lara, and my training for the Games begins now. On Thursday, I went to a CFRI conference meeting, reminding me of my ties and responsibilities back home. Andrew has been home each night, and we cherished our 3 nights together. It’s the simple things we appreciate more now- like eating a meal together; folding laundry; or sitting on the couch as I showed him 920 photos as once until we both nearly fell asleep. I went to the grocery store, did laundry, refilled my medicines, paid the dogsitter, and packed for Philadelphia. I gave lots and lots of love to Rupie. I am reminded how soft, cute, and needy she is! Yesterday, Ana got her cast off and we went swimming together for the first time in 4 months! It felt good to take deep breaths in the water. The muscle pain reminds me that I have a ways to go to train…Despite my anxiety that my lungs aren’t totally well, my PFT is excellent. Praise God! Nice to have a routine again. Yet. now, I am leaving again, just for a few days.

Anyway, thank you for your interest in our road trip! I will periodically post on the blog again. I am humbled by your support and kind words. I hope you can share your stories with us as well. Each day is an adventure!

Take care,
Isa
with Ana’s greetings!

PS Thanks for your patience! We are posting this nearly 2 weeks later. We just got caught up with life… I can’t believe one week ago we were in Philadelphia. One week before that were were in Arches National Park, the Sunday before that, Omaha, before that Memphis, before that Raleigh, before that Chicago, before that New Mexico! Oh, the places we go!

5/25/08 Capitol Reef National Park, Utah

Tuesday, June 3rd, 2008

5/25/08
Sunday

I’d like to say that the birds and sunlight in our tent woke us up but honestly it always seems to be the distant voices or cars of other campers that remind us that it is time to start the day. Although I slept well, I could have slept more. The eagerness of the day awaited us and we broke camp with heavy eyelids. We didn’t even bother with breakfast but headed straight into the car for our drive towards our next national park destination, Capital Reef National Park. We drove away from the unique colors of Canyonlands and through ranch areas and small towns. We stopped for gas in Green River, Utah, where we refilled our water bottles and collected some souvenir water from the mighty Green River. Now this was not the place to have car trouble. Green River apparently is one of the melon capitols of the USA. Once on the interstate, we were met with signs that read, “Next services 150 miles.”

Soon we were back in canyon country, this time with tall red walls of rock that reminded me a bit like Zion NP, where I visited years ago. The difference was that we drove parallel to a river that led us into Capitol Reef National Park. With our usual excitement we stopped at the entrance sign and took photos by balancing our cameras on a nearby branch. We can be such dorks! The river that welcomed us was the Fremont River, named for the famous explorer John C Fremont. Apparently the river allowed for fertile lands in between the canyons and the Mormons settled the area for farming in the 1880’s. They established the community of Fruita, comprised of 8-10 families, each with 10-14 children, and found their livelihood from growing fruit and selling them to local communities. The remains of the orchards, a one room school house (closed just in 1942), a settler’s cabin ( a 12 x12 room where 13 people slept! Many slept outside apparently), and farm were still preserved. Now, the orchards welcomed deer, and when in bloom, the fruit were available for picking and purchasing by tourists. A local farm still baked pies from the fruit and homemade breads and sold them to visitors (of course we bought some!) at the historic Guifford House, home to the area’s only polygamist in the 1800s. Isa also bought a small loaf of bread. In the car, Isa put peanut butter on it and served me a sandwich- our modest lunch! The Guifford House was quaint and brought us back to the frontier days.

In our usual routine, we headed first for the Visitor Center to watch the 20 minute introductory video and inquire about the best sights to see in our limited few hours we had there. Capital Reef was so named because of the large white sandstone domes that surrounded the park. Early explorers stated that these domes reminded them of the Capitol building in Washington DC. A “reef” is apparently a collection of rock walls that surround water. Hence , the name Capital Reef. Geologically, it is famous for being a “waterpocket fold”- an area of mesa that folded onto itself millions of years ago and formed a pocket that created a waterway and fertile ground.

We embarked on the famous scenic drive- 25 miles round trip - that took us towards Capitol Gorge, a scenic area with deep narrow canyons engulfing a small road. We drove by a settler’s farm, several washes (where flash floods were a risk) and famous rock formations boasting unique shapes and colors. We studied the geology guide we purchased for the ride and were amazed that the first layer of rock we saw, the red Moenkopi formation, was 550 million years old.

The final stretch of this road was not paved and we drove at 10-15 mph with some trepidation with our already challenged tires. Within moments we were surrounded by canyon walls several stories high, red in color and immense in time and space. At every turn a new view took our breath away and made us feel smaller and smaller in our little Honda as we were engulfed in natural beauty. At last we made it to the parking lot and trail head for the Capitol Gorge Trail, a 1.5 mile trail in a dried creek bed that took us to three natural “tanks”- large depressions in huge rocks that collected rainwater and served as water basins. It was another trail of some scrambling. The sun was out and the rocks bright red. I huffed and puffed, enjoying the challenge of the hike. As we walked through the creek bed, we passed the Pioneer Registry, an area on a rock wall where early settlers etched their names into the rock. Apparently this dried creek served as the ONLY road through this region in the 19th and early 20th century. The earliest pioneer’s inscription was from 1888. Unfortunately, reckless visitors whose desire to be special invoked them to scratch into the rock, made it difficult to distinguish which signatures were original settlers’ etchings versus etchings of vandalism. For example we saw the usual etchings: JP + SP 1983. What a disgrace. Everyone’s ego wants to be immortalized! What ever happened to “take only pictures, leave only footprints?”

We passed rocks with unique holes and crevices and thought about how my friend Stacey would love to rock climb here. We passed many young families with numerous children and assumed they were Mormon. We also passed pictographs on the wall, reminders of the earliest inhabitants of this area, the Fremont Indians. (Personally I don’t know why they’d name an Indian tribe after a white explorer).

We rushed back from our drive to attend a ranger led talk on petroglyphs at the nearby site of many. We could see high on the cliff numerous primitive art etchings, many which had animal and hunting symbolism. Again, these were believed to be from the Fremont Indians, who were unique from other native peoples of the Colorado Plateau because of their clay figurines and artistry that they left behind. For our final hike, we headed to Hickman’s Bridge, which was another arch, named after one of the men who worked to make Capitol Reef a national park. The trail was beautiful again, and led to grand overlooks onto the many white capitol domes. The trail was a perfect combination of smooth sand, boulder stairs and scrambling over large boulders. Below the trail the rushing Fremont River, made enticing gurgling sounds and shined in the sunlight, surrounded by fresh green aspen trees, cottonwoods and tamarisks (an invasive species). How I would have loved to sit on the banks of that river for a while. But no…. we had no time to sit, as usual!

After a great hike of sun and sweat, my foot was killing me. But no pain no gain! This was how I would get stronger! I am sure the doctor would question why my cast had a reddish hue. My boot was all about to collapse, so thank goodness we had a roll of duct tape in the car!

We headed back to the car and departed from Capitol Reef, stopping at one final viewpoint, Panoramic Point, which allowed us to view the park in the distance and all the other mountain ranges surrounding it. Again, what vastness, what emptiness, due to such inhospitable land. The Mormons are indeed a hearty bunch.

We drove into the small town of Torrey outside of the park, and since our stomachs were grumbling, we bought food including two of the most bland and old burritos I have ever eaten. Don’t do Mexican in Utah! The snickers ice cream sandwich we devoured made up for the gross burrito. We bought other essentials and looked forward to a full meal later in the evening.

We drove on Hwy 21 towards Nevada, hoping to find a campsite somewhere. Within a few hours, sunset was approaching. We entered the town of Beaver with its small town feel and Mormon churches. About 10 miles from the town, we found Minersville State Park, which welcomed fisherman for its lake and campers. Thank God! We drove into the campsite to find dozens of kids on bicycles, RVs, and loud music blaring amidst pick up trucks and BBQ pits. Uh oh… I thought. I hope it wasn’t a white trash campground. We had had horrible experiences with drunken folks in a WT campground in Napa Valley years ago. But this was Utah- famous for family values and non-drinking Mormons.

We found a site- the last one available- and quickly set up tent and stove before the evening night came upon us. Before us was a mountain range and a broad lake, made dark by evening shadows. We could hear birds on the lake still. The sound of laughing and screaming children echoed in the campground.

The campsite was the fanciest we had seen yet- quite a contrast from the one at Canyonlands that had no water and only a pit toilet. This campground had private enclosures with picnic tables for each site, a cupboard, electric lights above the shelter, running faucets, and even an electric outlet under each picnic table! The bathrooms, though far away, had showers (hot water was not working) and flush toilets.

Next to us was a family with an RV, a huge Coleman tent and three teenage boys. As we prepared our stubborn charcoals, the father offered to help us by pouring his lighter fluid all over it. While we waited for our food the mother brought us pickled eggs and later, left over BBQ chicken from their feast.

“Let’s do what the early pioneers did and get to know each other in the warmth of a campfire,” they said as they created a huge bonfire. Isn’t this so true, with this unknown family sharing their food with us? Not much has changed in 200 years… We enjoyed warm conversation. Apparently their teenage son had just graduated from high school and the family was on a 4 day fishing/camping trip to celebrate. They were the kindest and most generous people, although the father did remark how much he disliked California (he lived there once) because the “pace of life was too fast.” I can’t argue with him about the pace of life. It seemed to follow us even on our vacation. I was wrong to make assumptions about this “white trash” campground. I have never met any camping neighbors so generous and kind. In gratitude for their kindness, we gave one of our Fruita pies to the boys. It’s not a true gift unless it feels like a sacrifice to give it up.

We retired by 10:20 pm, with our stomachs full of canned beans, obscene amounts of sausage, and grits, plus the delicious food from our neighbors. We had sweet azuki bean porridge and mochi for desert- the last of our Japanese deserts we packed for our trip. It rained at night and the wind howled, but Ana and I were cozy and warm in our waterproof tent. How fortunate!
We slept as deeply as two exhausted and active women could out in the middle of nowhere.

We hope you all can imagine camping and enjoying these parks with us. We truly appreciate your patience to read all of our blog!
Hugs and love to you all,
ANA