Ana and Isa’s blog

It’s been a long time since I posted since my life is pulled in many directions since starting work in June. I appreciate all the faithful readers. This is a belated report of our previous  weekend’s adventures in Louisville, Kentucky. We flew out to Louisville , Kentucky, for a CF Family Education Day at the Children’s Hospital of Louisville on Aug 23. It was a late arrival in a wonderful LaQuinta Inn just outside the airport. The parking lot was filled with state trooper cars and I became suspicious. But on the marque above the hotel sign, it read “Welcome State Troopers: Kentucky State Fair 2008.” What would be more of a cultural experience that attending the KY State Fair?

We had ambitions to go to the fair early in the morning, but thanks to jet lag and a fabulous tempurpedic bed, we awoke late to head to Lynn’s Paradise Cafe to meet our friend with CF, Lisa, who came to California’s CFRI Teen and Adult Retreat in 2001 and 2004.  She was called “Kentucky Lisa” so as not to be confused with our local Bay Area famous Lisa.  It was a rare and meaningful reunion. Lisa is in her 40’s , working fulltime and balancing her own health challenges and home needs. She is truly amazing. We ate in an eclectic cafe adorned with colorful fake flower bouquets and games and toys on the table (including plastic horses of course). Isa and I had our share of gluttony with the Kentucky Grand Slam breakfast- omelet adorned with fried onions, fried green tomatoes, honey biscuits and sorghum. Whew! A CFers dream… or nightmare.

By 1pm, we headed to Slugger Field, Louiseville’s minor league baseball stadium. It was across the street from the Ohio River and Waterfront park where people were amazingly playing in the playground and even jogging/biking in 100 degree weather. Our CF Education Day talk was in the lobby of the stadium, tucked away in a small alcove reserved for private parties. There were about 60 attendees, mostly families with kids with CF. We spoke without a slide show using handouts instead. Our talk touched upon things like family coping, importance of community, compliance, dealing with dating, jobs, college and working while having CF, and of course transplant.  Despite the heat of the building and poor acoustics, our talk was well received (even though there were a few blank stares) and we even hit it off with some of the adorable CF kids. Many drove far distances, with one family stating that they never met anyone else with CF; they live in a town 40 miles from Louiseville that doesn’t even have a supermarket. This was a different world. The social worker said the main challenges to CF clinic staff in caring for these patients was smoking parents and a lower education level. Kentucky has some of the highest smoking and obesity rates in the country and some of the lowest college graduate rates. After our talk, we joined many of the families for a minor league baseball game at 6pm. It was 94 degrees and incredibly humid in the bright sun at that hour. I was proving to the world that I had CF, excreting records amounts of sodium, so much so that my sunblock wouldn’t even smear on. We were generously treated for dinner, and had our choice of chili cheese fries, pizza, burgers, pepperoni stuffed soft pretzels, ice cream, Polish sausages and Philly cheese steak sandwiches (did I mention that KY has some of the highest obesity rates in the nation??) . For those with CF, can someone say “pass the enzymes?”

It was wonderful to be amongst kids with CF again; it reminded me of the old days at CF camp. But one kid who was so affectionate, came up and hugged me. My instant reaction was terror , fear of his germs, and cross infection. What a pity … we are so indoctrinated to stay away from each other now that a simple hug has become a source of fear and dread. I remember the days of piggy backing and how carefree we were. 

After an hour or so, I was as salty as the pretzel I just ate and dizzy with overheating, so we departed the ball game to attend the Kentucky State Fair that we missed in the morning. We headed to the air conditioned convention center , where the woman who sold us tickets was toothless but I’m trying not to stereotype here and will say no more. The faire’s program boasted events like the Ugly Lamp contest, the Miss Kentucky County Fair Pageant, the cheer competition, the Rooster Crowing contest, and the Quilt award presentation.  As we entered an Elvis impersonator surrounded by teen girls dressed like they were from the 50’s walked by quickly.  To the right was a stage where a country line dancing group was showing their moves. A real hoe down. We had only a few hours so we raced through as much as we could see, Stenzel style. My goal: to see Kentucky thoroughbred horses- the most famous part of the KY.
We walked through the Expo section where booths sell stuff- lots of stuff- mostly made in China, but some innovative and home grown stuff too. We bought some homegrown organic Kentucky jams and hushpuppie mix, and homemade fudge. We passed booths displaying hunting gear, John Deere goods, the US Marines (some buff guys were demonstrating pullups on a bar), and of course, a McCain booth. One booth boasted all Confederate flag paraphenilia. I was relieved to see a booth on “going green” and the Kentucky Organ Donation booth. Some of the folks at the organ donation booth recognized us and said, “Didn’t y’all go to the (transplant) Games?” We exchanged friendly greetings, as so many member of this unique “family” do. We had to laugh when one asked, “Are y’all from Team Hawaii?” because this was asked frequently to us and our Asian American Team NorCal manager Cathy Olmo while at the Games. Apparently much of the USA thinks that if you’re Asian, you must be from Hawaii.

In this crowd, there was black and white, and very little in between so we were definitely stared at. I was expecting someone to ask  if I spoke English.

We made our way through the arts and crafts section where we admired incredible home-made quilts, clothing, artwork, floral arrangements, photography, oil paintings, and plantwork. We drooled as we examined the cake, cookie and pie section where homemade baked goods were taste-tested earlier in the day and now on display. Some of the cakes looked like they were right out of the Food Channel’s cake show. Very professional!!

Outside, we passed the stables where the thoroughbred horses were kept. It was dark and we could barely see the shadows of the horses in the dim overhead bulbs. We could smell their hay (our masks went on) and hear their hooves knocking on the bars. The stables were beautiful, with elegantly dressed jockeys and horsemen/women sitting below fans and award ribbons sipping champagne and watching the horse competition occuring in the other arena, on live video. Some horses were being tended by caretakers; some looked nervous, bored, or eager to greet passersby. What a life to be a competitive horse. In this world I could see glimpses of the sport’s history, reminding me of the Belle Meade Plantation in Nashville, where we visited in May. Belle Meade was not an agricultural plantation, it was a horse breeding plantation, where wealthy white southerners sold horses for competition while their slaves tended to them. Even today, with a glimpse of the stables and the people there, and the homogeneity of owners, I thought that this equestrian world was still a world of affluence and Southern tradition.

Finally we came upon the greatest event of the evening: The World Championships Horse Show. Tickets were expensive so we just poked our heads in to see a stadium filled with equestrian elegance and a whole new world of sport. We saw horses trotting in line, pulling carriages, racing in circles, and even miniature horses being judged on looks and behavior. Many of the attendees were dressed in their finest evening gowns to attend this horse show. Competitors were from all over the country, but mostly from the South.  The trophies were enormous, almost as shiny as the groomed coats of the stallions themselves. It was very impressive. The size, poise, and agility of the horses were awe inspiring. So is equestrian sport all about making an animal do what you want? When 10 horses are prancing around an arena, it was hard to distinguish the different skills of each horse. But then one would win and the crowd would cheer madly. There must be a secret to differentiating a good horse from a not-so-good one. Either that or I’m clueless.

After a while, we headed to see the farm animals, hoping to get up close and personal to more horses. But we ended up seeing rooms of swine, sheep and cows, side by side in 10×10 pens. These were some of the finest breeds in the state. The wool of the sheep was white and billowy perfect (I felt sorry for them in the heat) , and I’ve never seen such big testicles on a pig in my life. The cows just gave us sheepish looks and a big “moooooo.” There were cots with sleeping bags pulled right up against the animal’s pens, so that the owners apparently slept next to their animals for the entire two weeks of the faire. Ah…. the joys of a good immune system.  Did you know Texas is the biggest wool producing state in the country, and leading behind it is Indiana?

Finally, it was getting late (our flight left at 6 am the next morning) so we decided to get our true State Fair experience and head for the carnival outside. It was crowded with teenagers wearing as little as possible in the late summer heat and stressed out parents pushing cranky toddlers in strollers. Despite the cigarette smoke pervading the air, we admired the ambiance- brightly colored lights coming from the ferris wheel, the buzz of the crowd’s laughter and distant screams from thrilled riders, fun houses, live music,  booths of “throw the ball here” or “shoot the rifle here” in exchange for the much desired made-in-china stuffed animal. It’s just nice to see people having a good time. 

We finally found a ride that would prove to the world that we weren’t yet old. After much contemplation and sympathy for our chili cheese fries/Philly cheese steak stomachs , we chose a thrill ride rather than the swinging gravity (AKA puke) ride. Picture a giant six edged star with chairs hanging off the edge that rotated. We got into that ride and it started swinging side by side as the huge apparatus began to rise. Within a few minutes, it accelerated and the chairs starting spinning in all directions. First we saw the stars, then we saw the concrete 100 feet below, then we saw the people in front of us swoop by. We screamed in a way that I didn’t know healthy lungs did. I held onto the shoulder safety harness with all my dear life, the humidity and me fighting for a final sweaty grasp of that steel bar that separated me from an untimely and unfortunate carnival death. I could hear Isa screaming just as loud, in gulps that vibrated as if her voicebox was going to fly out of her mouth at the speed of the ride. As it slowed, I could only scream to Isa, “We’re getting to fuckin’ old for this!!!” But inside I felt young and alive, shaken into joie de vivre by good old human technology-turned-entertainment.  We had made it and we weren’t human remains on the Carnival pavement below. Why humans find thrills at high speeds in upside down, sideways motions is beyond me. Is it evolutionary from the early days of fleeing, or does it bring  us back to our fetal lives to do somersaults?

It was 11 pm and our 6  am flight was beckoning us home. As we walked towards the exit, we enjoyed one last country singer sharing live music amongst a beer drinking crowd, next to displays of American military tanks. 

Our last stop was a game where a man would guess your age or weight. Since my whole life I have been assumed to be younger than I was, I thought I’d give it a try. In exchange for the chance to win that much needed made-in-China stuffed animal, I gave him my $3 and stood before him as he examined my face. He discretely wrote two numbers on a paper and asked me my age. Guess how old he thought I was??

Damn right, 36! He got it right on the nose. DO  I LOOK THAT OLD???!! I tried not too look disappointed as he sympathetically gave me a consolation price- a dirty fake plastic rose. He must have a lot of experience because the last time I was in Kentucky for the USA Transplant Games in 2006, I was carded for alcohol and the shopowner told me he thought I was 17.  I guess this second transplant aged me and gave me a few more wrinkles. Maybe I should have dressed more skimpy  and he would’ve thought i was younger ; ) .

Anyway, we left feeling fulfilled for the best end-of-summer Kentucky experience- a welcoming CF event, a summer evening ballgame and the mother of all State Fairs- the 104th Kentucky State Fair- a true cultural experience.

One Saturday  in Kentuck. A different world, different people, different lifestyles… but true America.

Thank you for reading this long post.
Best wishes,
ANA Stenzel

Dear Friends,
I can’t believe it has been 4 weeks since I’ve posted! Thanks for being persistent to follow up and see what is going on. I also appreciate all the kind comments and warm wishes for my recovery. Thank you for your prayers and support.

I left the hospital in late July, feeling exhausted and the not-so-fun side effects of high doses of steroids. Worst this time was severe arthritic pain everywhere. The day after I was discharged, I laid in bed, staring at the ceiling feeling so weak I could hardly move, and I wondered if I could ever compete in the Transplant Games again. That is life with transplant: going from extremes of strength/energy to extremes of weakness/fatigue! Thank God, with patience and rest, and a lot of perseverence to keep those muscles moving, I am feeling much stronger now. I still have hip pain so running is out of the question and I wonder how I managed the 800m dash!

Once I got the okay from my docs that I wasn’t contagious, I went from the hospital to a full weekend of CFRI events. First I served as Chair of the CFRI Educational(www.cfri.org) Conference Aug 1-3. The best part this year was hosting Tiffany Christensen, a phenomenally gifted patient advocate who has become a dear friend of mine. She gave a powerful performance about self-acceptance at the conference (DVDs available from CFRI!). The entire weekend was filled with inspirational speakers who discussed a diverse range of topics such as CF related diabetes, compliance, updates on research, alternative medicine and CF, among many other great speakers. There was so much hope for the future for those living with CF. I was in charge of the new attendee orientation, panel of parents who have CF, CF trivia, support groups and the memorial. Andrew was the humorous emcee again this year, and amazes me with his dedication. Ana was in charge of selling rose necklaces and selling our book. This is about my 16th year at a CFRI Conference, and when I go it feels like a big family reunion. I love getting updates about peoples’ kids and my friends’ lives. With this crowd, we only have one thing in common- cystic fibrosis- yet there is an immediate bond and an unusual amount of caring and compassion. At the end of the conference, we got many excellent reviews that this was the best conference ever, so I felt very satisfied.

I went straight to the CF Teen and Young Adult Retreat, another magical few days of closeness with old and new friends. I feel so lucky to have this disease! Who else can ‘escape’ from routine life to hang out with their friends, talk about the deepest hopes, fears and concerns, learn about how to take care of one’s health, eat as much food as one desires, and do fun activities like arts and crafts and sports!? I feel like I learn something every year about human nature. The retreat is truly a social experiment with 30 people of all different backgrounds and intellectual and emotional abilities who come together for one week because they have one thing in common: cystic fibrosis. I especially love witnessing the younger people evolve and grow with each passing year. As rap group facilitator, it is amazing to see how people support each other with comments and body language. With effective group exercises fostering trust and openness in sharing, a culture of compassion is born in these support groups. Many of these people have been going to CF camp and now retreat for more than a decade, so I believe these rap groups have fostered us to have tremendous communication skills that we wouldn’t have learned from just our families. There is an emotional transparency and intimacy among people with CF and their supporters that truly feels like this environment occurs no where else in the world. There is respeect, love, care, understanding, true listening, and truthfully, there is also self-absorption, distrust, judgment, resentment, anger– the full range of human emotions. One concrete example of the specialness of the retreat community was the day we were supposed to go swimming. The group felt it was too cold so on a whim we decided to go hiking. We had an old map to a local park. However, we had two people in wheelchairs so we made a change and decided to go to a park with pavement. Tom volunteered his truck to carry the chairs and we headed to the park. Halfway up the path the gate was locked, so the able-bodied people lifted the chairs over the gate! We were all together and made it all the way up the steep hill, with some of us pushing the wheelchair up in the heat and sun. It was such a joy to all stick together.

Since the CF retreat, I’ve spent my days recovering and reflecting (and catching up with emails). My life seems to be full of high action and exhaustion/rest. I also went to a Spanish CF education day in Oakland. I have been preparing to travel to Louisville tomorrow for another CF education day. Then I head to Denver with Andrew to enjoy the Democratic activities and finally hear Obama on Thursday, August 27. My dad is coming on Friday, August 28 so we can go backpacking in Rocky Mountain National Park! This will be another dream come true!

I will post again in a few weeks with more updates. I am writing in haste and wish I could be more reflective and insightful but for now this will have to do.

I hope you are all well and you can enjoy a close community bond of your own- whether it is CF, transplant, church, or another group. Have a beautiful August!

Love Isa

7/14 Monday:

If you want to see photos, check out: http://s350.photobucket.com/albums/q439/teamnorcal08/?albumview=slideshowv

I will try to make my last post about the fabulous Transplant Games a bit shorter. After a full swim and piping day, I slept deeply and woke up late, around 8:30am on Monday morning. But I still tossed and turned at night worrying about my sprints and felt tired. 

We had a relaxed breakfast of bagels and peanut butter with my parents in our room. Then we piled into our car and once again headed to Carnegie Mellon.  It was a beautiful day with blue sky and scattered clouds, but no rain as predicted.  It wasn’t too hot either. We couldn’t ask for better!   The track was just outside the swimming pool and had much more spectator space. The minute I got there I saw Lara kick ass on the long jump- 9 foot 7 inches! Not bad for someone around 5 feet! She ended up winning the bronze medal and I was sooooo proud of her! I wandered around the track looking for Tiffany (a five-time kidney recipient), and our newest member of the 100m x 4 women’s relay, Tina (a kidney recipient).  The night before I got a call from the 4th runner saying she couldn’t do it because her tennis match conflicted with the time. We called other Team Nor Cal women and Tina was the only one able to run.  She made it possible for us to have a relay team! She was sweet and enthusiastic but also said, “I’ve never done this before.” When we finally found her I registered the team and grabbed a baton and in the corner of the track we practiced the baton handoff: right-left-right-left.  I gave Tina a few tips and we figured Tiffany would go first, I would be second, pass to Tina and then she’s pass to Lara, our fastest runner, who’d bring it home.  We waited for over an hour in the heat and watched people do the long jump, high jump and the impressive 100m dash.  I cheered on my friends: Dottie from New England who has CF, Paul F. who has CF, and people I didn’t even know who just seemed to need screaming fans.  I screamed my brains out (I decided these great lungs make me have a very powerful scream) to root on Tom M., my dear lung recipient friend. He came in second in his heat and made it to the finals! I was so moved to see people do their very best. There were many older men sprinting. Sadly in each heat, there was always one who collapsed shortly after starting, or stopped midway limping in pain! The cheers crescendo’d each time an injured runner hopped to the finish line! In the teen group, there was a skinny handicapped boy who came in last but received the loudest cheers, because even if his legs didn’t work he was RUNNING.  These 100m spurts of energy are extraordinarily inspiring, no matter what the age or ability. The children ran a 50m sprint and it was so inspiring to see kids as young as 2 1/2 running straight into their parents’ arms! One girl was very handicapped and in a wheelchair. An adult pushed her and ran when the gun went off, then 10m before the finish line, stopped, grabbed the child out of the wheelchair, and the girl limped and hobbled to the finish line, amidst loud cheers!  She had a massive smile on her face! These are the heart-warming moments of these Games. Lots of tears. 

I found out my friend Lorma, who received her heart-lung transplant at Stanford in 2005, was going to run the 100m relay also, for Team Maryland.  Though she was my competitorJ, we spent some precious moments in the center of the track, as I coached her on stretches and warm up, and carrying the baton. I gave her tips to not injure herself- most important. She said nervously, “I’ve never done this before.” This was such a celebration! I remember her boney and breathless, in a wheelchair, waiting for her transplant at Stanford! She has suffered so much after a lifetime of congenital heart defect struggles, including two cardiac arrests. I remember asking her, “What do you want to do after your transplant?”, and she said, “I just want to run.” And here we were, at the 2008 Transplant Games, getting ready to RUN. Praise God.  Finally, it was time to line up. My blood boiled with adrenalin and we girls lined up, rooting each other, laughing and smiling at this POSSIBILITY.  We wished each other luck, and got into our spots along the track. The gun went off, and Tiffany FLEW toward me as she ran the curve, ahead of most other runners. She had nice long strides and really did a fabulous job! She perfectly handed me the baton and I took off, running as fast as I could as the crowds’ cheers moved me ahead. I moved the baton slightly in my arm to have enough room to pass it, which was risky. It was all so fast, but I noticed there was no one near me. I saw Tina start to accelerate just as I was losing my energy and I really struggled to reach her. Then I slammed the baton in her hand and she took off (later she showed me a huge bruise on her palm because I guess I was rather eager!).  I saw my feet step out of the lane just as I passed the baton, and the official raised the red flag… that meant I was disqualified. Rather than scream and cheer Tina, I was overcome with disappointment that I messed up everything for my team. I was sooooooo bummed out. From a distance I saw the nice handout from Tina to Lara, who then flew like a rocket down the straight away and came in second, after Philadelphia (they are always awesome- lots of young girls).  I first saw Lorma coming toward me, and I raised my arms and embraced her saying, “You ran! You ran!” because her team did great -coming in third.  This soothed my disappointment, because this celebration is more important than winning.  But I felt so guilty for ruining my teammates’ pleasure and if I had a tail it would’ve been between my legs. When Lara, Tiffany and Tina came to me cheering I had to confess how sorry I was that I DQ’d the team because of the red flag and stepping out of the lane.  I went up to the stands and told Lara’s parents and her dad yelled at me, “WHAT?” and I felt even worse. Then all of a sudden over the loudspeaker they announced the winners, and Team Maryland came in second, and Team Nor Cal came in FIRST!!!!!! We came in at 1:18, under 20 seconds per runner! Apparently, Team Philly was DQ’d but I didn’t see the runner was right behind me in my leg so the flag was raised for them! I felt bad to be happy that we won at the expense of a very, very disappointed Team Philly. That didn’t seem fair. But as Tom G would say, “You gotta play by the rules.” Again, this was another miracle. To celebrate a GOLD in the relay with three other women who had never been to the Games, who had never done this before, was absolutely amazing! I was especially proud of Lara given all her medical crap she has been dealing with! She was truly a track superstar, reliving her high school glory days to our benefit!  

A true highlight was half an hour later at the awards ceremony.  We got onto the medal stand with Lorma and her teammates next to us, along with Team New England with Dottie. Then our Team Nor Cal donor mother, Zona Z., placed medals on each of us. We hugged and kissed her. She did the same for Team New England.  It was extremely special for Team Maryland, because Lorma won her silver borrowing the powerful heart and lungs of Zona’s 16 year old son Matt who died in a football accident. Zona and her family were on the Montel Williams Show last year to meet Lorma for the first time, and the Transplant Games were another reunion for them. Who would’ve imagined that Matt’s gift of life would also grant Lorma her dream of running, and a gold medal at that, and Zona and her husband and family were there to witness it? We had some time to relax and I attempted to eat half a sandwich but was overcome with nausea. I had another snickers and power gel loaded with caffeine.  I tried to relax, but all I could think about was the terror I had about my upcoming 800m. I was already exhausted from the relay and prior 2 days and lack of sleep. As I walked back to the track, I was greeted by an older man in a suit- who was Dr. Thomas E. Starzl, the pioneer transplant surgeon at Univ. of Pittsburgh Medical Center who MADE TRANSPLANTATION POSSIBLE!!!! What a true honor! All I wanted to do was fall to my knees with gratitude.  God bless this saint.  The time came for my last event, my 800m. Andrew’s family as well as his friends Andrea and Lloyd (true marathoners) cheered me on. I felt almost sick with nerves and felt weak. I was just tired and I wanted this to be over with. When I lined up I was relieved there were 3 women in my age category- so at least we’d all leave with a medal.  Again, every ounce of my being flooded with adrenalin at the start line. I wore Nancy’s old track shoes, that gave me her tremendous spirit to run like the wind.  But the soles were loose so I duct-taped them on tightly.  The spikes really helped to give traction and I started strong when the gun went off! After the first roundabout I merged to the inner lane and kept a steady pace. My lungs burned. I am slow to warm up and in no time I was panting. My throat was bone dry. How could I last another 1 1/2 laps!? But I just focused on one foot in front of the other, pushing with my quads.  I passed one woman and then came to my formidable foe, and my legs pushed forward as I passed her. Then I knew I was ahead for my age group. The second lap started quickly and I kept thinking this is almost over. Everything hurt, and I removed my mind from my physical strain.  I was breathing really hard and slowed down a bit, but Tom, Andrew, Andrea, and Lloyd’s cheers kept me going. Andrew kept yelling, “Think of Xavier! This is Xavier!” and he ran alongside me during the last stretch. On the last straight away I gave it my all and tried to sprint as much as my lungs would allow.  I could muster a smile as I crossed the finish line, 20 seconds before the other person in my age category. My time was the best I’ve ever done: 3 minutes and 50 seconds (my practice runs were 4:20-30).  Xavier did this for me!!!! His excellent lungs allowed me to win a gold– again. Praise God. What a moment.  

My muscles shook and it took me a long time to recover my breath. My mouth was so parched I guzzled water. Now the real relief started. I was done. I had survived the 2008 Transplant Games.  After I watched Lara kick butt in the 200m race, I went to the medal stands and allowed my loving husband Andrew to place a gold medal over my head. He deserved it, for being my greatest cheerleader and supporter all along.  All week I barked orders at him to help me out and finally he deserved a medal.  He said by community property law it belonged to himJ. Exhausted, heat stricken, spirits high but body low, we went back to the hotel for a cozy dinner with the Byrnes/Stenzel family.  I was energized by a phone call from Stacey C., another lung recipient friend who had a tough medical year, to report that she won a SILVER medal in badminton after 7 rounds! It was a tough battle and she had to pause to catch her breath, but with her perseverance she did it!!! I was so proud of her! 

At dinner, I played with my beautiful niece and cherished calmer time with my family. I was so grateful that everyone endured the heat, long waits and crowds to support me. I am the luckiest woman in the world to have such a great family! Afterwards we hung out a bit and then everyone retired. I left the room at 10pm and went downstairs to the Quilt Pinning Ceremony. This is a touching ritual where donor families make quilt squares for their loved ones and share a few words. It is truly a tear jerky. The ceremony was almost done when I got there but several donor family members came up to me and praised me for my piping yesterday. It is so bonding to just talk to these heroic parents. Some were from Arkansas, Missouri, New York, with different political and religious beliefs, but it didn’t matter.  I feel a deep love for them like they are my own donor family. I landed in bed by 11:15- completely depleted. My mind rehashed the peaks of the day not long before all was quiet. 

On Tuesday morning, I woke early again and by 8:30am head out with Andrew to North Park. My muscles were not even sore but just weak so it took effort to move. Ana went to play volleyball for Team Nor Cal, but I didn’t go. I wanted to support Tom M. at the cycling event. We got to the park and found Team Nor Cal cyclers Tom, Neal and Jerry all ready for their 5K race. Andrew and I tried to walk to the start line but it was a long road ahead.  We enjoyed a romantic morning stroll, arm in arm, along a creek and lake, in this beautiful rural Pittsburgh. It was getting hot and we thought we’d miss the start so we turned back and waited at the finish line. I screamed my head off and snapped photos when each of these guys came in. Tom made 7th place! The kids did a 1K afterwards and I screamed when our only Team Nor Cal child, 6 year-old Colby, came in to the finish line. He was so adorable! We waited a very long time for the 20K to start, after lunch. Andrew and I got take-out and went to a picnic table in the shade, and this day ended up being a romantic outing for us! I cheered Tom M, Neal and Jerry as they sped past me for the first loop of the long hilly route. Tom came in at 28 minutes for the first loop and then exactly one hour to reach the finish. He did such an amazing job as a first-timer and lung recipient. Most of the guys were serious competitive road cyclers with all the proper gear, so it is a really tough event to win. All three did fabulous, even without medals. 

Andrew and I wanted to make it back to volleyball to watch Ana but heard they had lost by mid-afternoon. This is unusual for Team Nor Cal, who usually wins a medal. Oh well, other teams can have their glory.  We returned to the hotel briefly to nap and wash up, but then went straight back to the convention center for our team dinner.  It was so great to see all our teammates in their matching shirts laughing and talking about the events of the Games.  People who used to be part of Team Nor Cal came, as did Lorma and her family.  Our former team manager Mark G. stole a banner with Ana and me on it and presented it to usJ. People gave speeches about how they felt about the Games, and tears were shed. We signed thank you’s for our sponsors and the speeches just kept coming and coming, showing how close-knit our team had become. Finally it was time for a quick photo and time to leave.  As a team we took a bus to the Closing Ceremony. The Closing Ceremony was at the local UofP basketball arena and was another collection of beautiful songs, speeches and awards.  Tom G. and I sat in the front row ready to present Ana an award.  When the time came for her to receive the Making Lives Better Award, she tearfully came down from the nosebleed section.  She gave a speech of gratitude to her donor families and shared how Dawn had just died waiting for lungs and a kidney, so more work needs to be done with signing up organ donors so this doesn’t happen. I was very proud of her, for this award she deserved so much. 

Team Arizona won the Team Cup for winning the most medals per athlete.  The Closing Ceremony ended with a video montage of the Games highlights, which featured a few of our team members.  It concluded with the announcement of the 2010 Games in MADISON, WISCONSIN.  I was disappointed it was again so far from California. My goal is to be well and able to attend the Games with Ana, Lara, Tom, Lorma and so many of my friends in 2010.  Will YOU consider coming?!?!? We stuck around for the dance party briefly but then left around 11pm. I tried desperately to trade my remaining Team Nor Cal pins. I forgot to mention that pin trading is a long-time tradition and a great way to chat with strangers. Each team has a unique pin and the goal is to get one pin from every team represented. It is so much fun!  

We said sad goodbyes to so many new and old friends from all over the country.  So much love among even people whose names I forget. We reached the hotel and crashed by 12:30am. I lay in bed depleted, emotionally overwhelmed, high, happy, thankful, amazed, in awe and thoroughly fulfilled at the completion of the 2008 Games.  Not that it’s about winning, and not that I intend to brag, but there were nine medals between the Stenzel twins, three for newly transplanted Ana and one for every event I entered, three for Lara, one for Stacey, one for Lorma (or did she get one in bowling?), two for Tiffany and so many other victories made me so proud of all of us.  This has been the best Games ever. I’d be remiss if I didn’t mention that we slept in late on Wednesday, 7/16, and I woke up feeling like I’d been hit by a truck. I was coming down, way down, from my week of adrenalin.  We mailed off some Breathing Room images that we had shown at the EXPO, and in the afternoon, we took a nice trolley tour with Andrew and Trent of the city of Pittsburgh.  It was a beautiful clear day and we enjoyed to learn about the history of this city.  We had lunch at 3pm and then returned to the hotel to prepare for our Cystic Fibrosis Center/ Pediatric Lung Transplant Program talk at the Children’s Hospital of Pittsburgh Medical Center that evening.  The staff prepared a gorgeous venue for the First Annual Carrie Martin Memorial Lecture… and we were the speakers! Carrie Martin was a 15 year old lung recipient whose family generously supported the purchase of books for each attendee.  Our talk was very well-received even though I was nearly depleted in energy.  We were treated like royalty and had the honor of distinguished physicians like Dr. David Orenstein present.  We chatted with each attendee as we slowly signed books, and left at 10:30pm.  Apologies to the wonderful staff! 

We got to the hotel super late and exhausted. Andrew woke very early to fly to Austin, and I slept one hour later and rushed to the airport to catch my 9am flight. Ana and Trent rented a car to drive to Washington DC for more siteseeing. I slept in the plane and arrived home 2 hours after I landed thanks to public transportation from SFO to Redwood City. I was thoroughly emotionally and physically fulfilled. I picked up Rupie and bought blessed California produce which I devoured for dinner.   Thank you for reading this long post again. I guess I did it again. Brevity is not my strong point! I just wanted to give you the thorough report on the Games so that you too may be inspired to attend, if you are a recipient or interested friend. I hope these stories allow you to reflect on the emotional highs of your life, and if there are few, how you can be involved to find more of them.  The Transplant Games epitomize what life is all about- celebrating being alive, cherishing health and making the most of our physical abilities, that loss and life are intimately connected, that love and generosity are healing to even those who’ve suffered the worst pain, that sickness is sometimes redeemed in health and that the weak do become strong.  Thank you to all my medical caregivers, my family, my friends, and my donor family who’ve helped to allow me to experience these life-affirming moments. God bless you and have a beautiful week.Love, Isa

Dear Blog followers,

Tomorrow I depart for the US Transplant Games with three other lung recipients. We will proudly represent the 5 lungs on our team of 28 transplant recipients on Team Northern California of the USA Transplant Games. I am emotional this time of year as I approach my 1st re-transplant anniversary- there’s some post-traumatic stress from the physical challenge I had this time last year, as well as feelings of sorrow and guilt for my donor, whose family is reminded it has been a year since he was with them. But of course I rejoice in all I’ve been able to do and how wonderful my life has been in only one year.

Three weeks ago I returned to work doing genetic counseling in the area of prenatal diagnosis, so this will limit my personal time further but also provided much needed income, benefits and intellectual stimulation. Already I enjoy working with families and getting outside of my own little world. To make matters bettter,  I work with an incredibly supportive group of colleagues who exemplify quality human beings.  

I’m working hard on my goal of not overdoing it and trying to relax. With the inspiration of Ed Kinney, I recently began playing my flute again. It is amazing to breathe and remember the fingering from high school. I have been inspired by my musical and artistic friends that we all need a  creative outlet. It helps the brain smile.

Isa’s post was immensely long last time so I won’t be too verbose. I just want to thank you all for your support and encouragement as we head to the Transplant Games. For those of you who may be interested in an ABC news segment on the Transplant Games and Team N.Cal, please see:
http://abclocal.go.com/kgo/story?section=news/local&id=6252776

I hope you Californians are surviving the bad air and hot weather. With new lungs I barely notice the smog, but many asthmatic and CF friends are suffering.

Please pray for my friend Dawn who is waiting desperately for a re-transplant AND a new kidney. She is in critical condition and had a false alarm “dry run” yesterday. May God grant her the third chance that I had.

May goodness and health surround you all.

 ANA

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

5/23/08

We awoke in the Days Inn and, after the usual simple carbohydrate breakfast of waffles, cereal and muffins, headed back into Arches National Park to continue exploring the famous arches. Trent and I drove separately from Isa, so that we could enjoy the day together, promising to meet Isa back at 5: 00 pm for our cruise on the Colorado River. I desperately wanted to go river rafting, a famous endeavor in Moab, but with my cast and the threat of getting wet, I had to refrain and chose a more subdued evening river cruise with senior citizens. Trent and I drove into the depths of Arches National Park toward the Devils Garden trailhead. The morning sun mixed with stubborn clouds, making speckled red, yellows and browns on the rocks. Being Memorial Day weekend , there were plenty of others on the trail. The Devils Garden Trail was a 7 mile loop that took visitors up a sandy path towards one of the longest and most fragile arches, Landscape Arch. Apparently the arch broke in 1991 , witnessed by local hikers, and lost a huge chunk of its side. Now the most narrow part of the arch measures only six feet wide. The path continued towards 6 more arches, this time up more primitive trails involving some scrambling up rock. At the Navajo Arch and further down at the Partition Arch, which provided a grand view of the entire park through it’s magnificent view hole, it began to rain rather rigorously. The wind nipped through my thin pants and I could feel myself shivering. Somehow since my last transplant I have become exceedingly sensitive to cold. We decided to forego further wandering in the rain and headed down, trusting the rubber on my cast’s boot to adhere to the wet sandstone rocks. What a gift it was to hike with Trent for the first time, after a year of oxygen, wheelchairs and crutches. FINALLY, we could have some fun together.

Trent and I made it back to the car as the rain subsided a bit. Arches NP is known to get only 12 inches of rain per year; how ironic that rain would happen on the one day we happened to be there. After a brief lunch of sandwiches, beef jerky, fruit and cookies in the car, we continued on the scenic drive following the park’s recommendations for the best visible arches - Skyline Arch, Sand Dune Arch and finally the most famous - the unofficial symbol of Utah - the Delicate Arch. The Delicate Arch lies on top of a mountain, by itself, unsupported by great walls of sandstone. It requires a 3 mile strenuous hike to get to and we were pressed for time. We decided to take an alternative trail that went up a mountain next to Delicate Arch so we could view it across a canyon instead of hiking directly to it. That viewpoint trail was only 3/4 mile long although it entailed further scrambling and hiking on large bolders. It gave us the time to sit on the ledge of the canyon and relax, overlooking the scenery, holding eachother in the cold and just chilling out ( a rarity for me- I need Trent to do this). In a way, having another person join us, especially someone as type B and relaxed as Trent, helped me slow down. Isa and I always push to the max to get it all in, to do that last hike despite the time pressure, even if it means running down the mountain. Having a third person meant being open to another person’s travel style and wishes. In the end it worked out that we didn’t hike all the way to Delicate Arch. As we were heading back to the car, we met Isa who claimed that she just finished the entire 7 mile hike at Devils Garden in the pouring rain and howling wind. She hiked in utter isolation to distant arches, as others turned back to avoid the rain, but the jackrabbits and blooming springtime cacti kept her company. It took her much longer than anticipated because of the severe rain and treacherous trail that involved steep hands-and-knee hiking up rocks. She even confessed to having to make a detour because the trail was too slippery to hike down.

She ultimately ran out of time to do the Delicate Arch trail. For a Stenzel to be deprived of a trail was like an alcoholic being deprived of a drink. We were due back at the Colorado River port for our river cruise in 45 minutes and had to let that trail go.

We arrived at the river cruise to find that our jetboat would have only 8 people on it. The good news was that we had ample room to move about on the boat for the best scenery. The bad news was that it was a jet boat using fuel and what a waste for just us.
The boat sped off and the cold, sunset air chilled our cheeks and blew our hair wildly, reminding me of the time I road an airboat in the Florida swamps years ago. Trent and I huddled in the cold. In a few moments the boat slowed in between towering red rock walls. We were engulfed in a canyon- the brown muddy waters of the Colorado were surrounded by fresh spring shore trees of tamarisk, cottonwood and others. We were told this was the highest the Colorado River had ever run, and it was threatening homes on the shoreline. The river was calm in this region- it was said to become whitewater about 5 miles down the river at Cataract Canyon, where the Colorado and Green River converged. That area was the experienced rafter’s dream. Along the river cruise the guide stopped to show us unique arches hanging over the canyon, salt mines, petroglyphs on the canyon walls, rock climbers, campgrounds, historic trails, and deep canyon locations where GMC truck commercials and Wild Western John Wayne movies were filmed. The clouds of the day were finally parting and the grey sky opened up to bright blue, reminding us of how much sunlight was left at 8pm when it shined through the clouds. At last the signs of rain were subsiding and the rock became golden on the canyons. Birds flew in and out of pirches in the canyon walls.

The river cruise culminated with an all-you-can-eat Dutch oven BBQ dinner. The scrumptious generous meal included salad, corn, freshly baked bread, baked beans, fried potatoes, and every possible BBQ’d meat you could imagine. It was our first AYCE (all-you-can-eat) experience on this trip and we were determined to go for the gold. We sat next to two elderly men who were on our river cruise- one was from Japan. It turns out they were also on a 7 week cross country trip in an RV, starting out in Virginia. In speaking to Joe further, it turns out he is married to a Japanese woman and was traveling with his brother-in-law, who in classic Japanese fashion was basically mute. We connected with Joe, and by the end of the evening he bought two of our books for his half-Japanese children. In the usual prednisone-induced feeding frenzy, we ate for two hours straight until the servers where ready to turn the lights off and lock the doors. *birp*

Feeling full from our indulgence, we headed back to our simple motel in downtown Moah. The night still felt young even though the sun was setting. We did a little shopping in the quaint touristy stores, trying to find the perfect souvenir that was not made in China. I left empty handed, feeling satisfied by the photos I had taken, and the water I had collected in my Colistin vial from the Colorado River- the best souvenirs.

It had been a long day. I had hiked about 5 miles total on my cast, and my foot was yelling at me. Not to mention it was brown and wet from the rain and dirt. But the day was a good one and I had seen more of God’s glory. Trent survived two days of “vacation” with the Stenzels. I could tell he was tired. He looked dismayed when I asked, “Could you handled 40 days of this?” We slept deeply as the temperature dipped outside. We were pleased we had chosen to stay in a hotel instead of camp after all.

Thank you for your continued interest in our blog.
We are posting these late, as you know , due to our poor access to internet last week.

ANA STENZEL

5/18/08

Isa ended the last blog post with a few words about our dinner with my donor family in Omaha. It was another special evening, of good conversation and connection, learning about the Dorn family and their roots in Nebraska. I was honored to be invited to their special family reunion time together, and to meet James’ cousin and her identical twin daughters. Funny, isn’t it- both my donor and Isa’s have twins in the family!

One of the many gifts of our road trip is connecting with people from all over the country due to our CF and transplant communities. And of course, meeting my donor family in the middle of the country is an absolute highlight. Who would have ever imagined this would happen? They are loving, fun, united people who respect family and country. I learn from them with each encounter.

The following day was our speaking engagement at the University of Nebraska Medical Center CF Family Education Conference. The UNMC CF Center serves about 300 CF kids and adults and is a top-notch CF care center. Upon our arrival, we began booksigning at a booth provided for us prior to the opening of the talks. Dr. Preston Campbell, chief medical advisor for the CF Foundation, came up to us and gave us compliments, calling us the “CF Rock Stars.” We certainly weren’t worthy of his compliments- we were the ones humbled to meet this very distinguished “celebrity” in the CF world. I felt like a groopie. He has done so much to push innovative CF research through the pipeline to advance new therapies. What a surprise to meet him!

Our talk was well received. It’s always wonderful to meet other CF adults and parents of young children. There are those who have non-classical CF with late diagnoses and functioning pancreases, and those whose toddlers are already culturing pseudomonas. Such a range of disease states, but we still have shared genes, making us family in a way. No matter where we live- East coast, West Coast, middle America- we connect immediately.

Interestingly, our talk was given in the Durham Research Center, a building designed by my architect friend Mike who is on the CFRI Board with me and whose daughter has CF. What a small world!

After our meeting, we were met by Tim, the brother of our dear mentor and friend , Terry who passed away from CF in 2003. Terry had his transplant the same summer as me in 2000 and unfortunately caught a serious infection in 2003. He was a social worker, a philosopher and role model to many - a sage person, who is quoted in our book (page 101), writing a passionate passage about being in an eternal Greek battlefield while we fight our CF.

We hadn’t seen Tim since Terry’s passing, but we were welcomed to his home to have dinner and spend the night. Their home was located in the outskirts of Omaha, next to… you guessed it, a cornfield. We met his wife, Denise, and two beautiful daughters and enjoyed a wonderful homemade meal of corn, potatoes and Nebraska filet mignon. It was scrumptious. Tom , Tim’s twin brother, joined as well and we laughed as we reminisced about Terry and joked about twin stories and life in Nebraska. Tim was so generous and presented us with t-shirts bearing logos from John Deere (tactor company) and Got Corn?

The next morning, spoiled with a carepackage from Tim and Denise, that contained breakfast muffins and snack foods, we embarked on our 700 mile drive to Colorado Springs.

I left Omaha feeling that the Nebraskans we met were wonderful, warm, welcoming people, a refreshing change from Arkansans (no offense). We drove through Nebraskan countryside- vast farmland of newly planted corn, wheat and alfalfa. It was lush and green, with migrating birds singing loudly as we slowed for red lights before heading onto the Interstate. Once on the Interstate we saw rolling green hills, cut by deep crevaces of wooded areas where creeks ran. Multiple state parks and historical landmarks teased us from the road but we couldn’t stop in the interest of time.  At last, about 100  miles later, we stopped for a quick detour to Fort Kearny, a military post during the 1840-1870’s . This fort was established to protect the thousands of wagon trains of settlers heading West on the Oregon trail after the California Gold Rush of 1849 beckoned them west. It was also a headquarter during the Indian Wars, and was the sight of training for the Pawnee Scouts, who sided with the US Army to help fight the Sioux and Cheyenne. There was much bloodshed in this region. We walked around the grounds, admiring a museum display and reconstructed relics from the time- covered wagons, blacksmith tools, and of course, the fort itself. Images from Dances with Wolves, one of my favorite movies, filled my mind.

We drove back to the Interstate, crossing a bridge over the Platte River, which ran parallel to the Oregon Trail. The view was breathtaking- a deep moving river, embraced by cottonwood trees and green marsh grasses. Migrating swallows buzzed around chirping, forming an orchestra and dance together. This region is famous for the annual migration of the great Sandhill cranes- millions fly down from Canada each Spring and attract birders from all over the world. This migration is also listed in the book about the 1000 things to see before you die. Unfortunately the cranes had already migrated through the region in March and April.  We saw locals Nebraskans pushing their canoes into the banks of the river to embark on a Sunday morning paddle. That’s what life in the countryside is like.

We passed Kearny’s other famous landmark- a great archway museum that hangs over Interstate 80. It is a frontier museum that was somehow strategically built over the freeway, like an overpass, so that all tourists would dare not miss it. I deem it like a miniature version of St. Louis’ arch.

The next six hours of driving were like watching a constant movie of rolling green hills and farmlands. Someone once said that going through Nebraska and Kansas was going to be boring, but I beg to differ. Never once was I bored with God’s artestry. We passed small towns- many of which start to look alike after a while- they have a post office, a Main Street, several churches, a cemetary, few simple houses with vinyl siding, a local diner with a flashing neon sign, and of course, a junk yard. The “larger” towns boasted hotels and gas stations along the Interstate, a Walmart, multiple fast food restaurants, and of course a token Chinese restaurant whose marquee is written in stereotypical kung-fu writing. All along the small town roads we saw John Deere tractors, pick up trucks and hay bales. On the small highways, brown and white signs displaying the nearest State Park or recreational area only led to a dirt path leading miles down the road. Too risky for Honda Civic tires that are 8000 miles worn. We played John Cougar Melloncamp’s “Small Town” and Dixie Chick’s “Wide Open Spaces” as we drove. We passed roadkill of coyote, deer and racoon, who met their fate in the most unfortunate way.

Ok- I got to take a break from writing because we just got pulled over by the cops. (note : pulse increase, sweaty brow, some kiss ass….) Ok he let us go with a warning. Isa was driving 75 on a 65 mph road. Whew… (meanwhile as we start driving again, a bunch of cars pass us).

We see miles and miles of green pastures, with distant farmhouses, barns and silos. It is absolutely the Heartland. As we entered Kansas the land flattens and the trees disappear. Kansas is true prairie country- flat brown grass (wheat?) for miles and miles- as if the horizon melts into itself and the land just drops off. I wonder if people out here get claustrophobic?  I close my eyes and imagine the time when 30 million buffalo roamed these grasslands.

We see farms of longhorn cattle, enclosed by wire fences, and other cattle of all shapes, sizes and colors. We pass pastures of grazing horses, whose brown bare backs illuminate in the backdrop of green hills and baby blue cloudless skies. I saw miniatures, shetlands, and even donkeys in the backyards of farmers.

In the late afternoon, we enter Colorado. Being back in the West gives us a sigh of relief for suddenly it doesn’t feel so far from home. We are racing to the Garden of the Gods ) a park in Colorado Springs) before dark. Gotta get that sightseeing in! Before us stand the snow peaked Rockies inviting us in the distance. Could life get any better? This is the first time I have been well enough to come to this continental masterpiece.

Oh God, Isa just put in John Denver’s CD in again- this time it’s Rocky Mountain High that she will play incessantly instead of Take Me Home Country Roads.  The words resonate with us, “He was born in the summer of his 37^th year, coming home to a place he’s never been before…”

Wow- we just passed a sign stating that the elevation is 6000 feet high! We didn’t even notice that our drive was a very gradual ascent.

We will stay at the home of the mother of a CTDN (California Transplant Donor Network) coordinator.  Again another connection from our community. Tomorrow we have reservations to board a railway to Pike’s Peak, a 14,000 foot high Rocky Mountain Peak. That will be such a gift to go that high and I hope both of our lungs will cooperate.

I am truly high on life. I can’t believe in 9 days our journey will be over. We have wonderful memories, a carload of souvenirs and much footage on our video camera and digital camera. Each day is a blessing.

 ANA

5/4/08

It has been several days since we have written, because the scenery of our drive has been too breathtaking to pull out the computer for blogging. We are so driven to see as much of the country as possible that we are combining our book tour with sightseeing, making for long days and late nights and much God praising, singing and laughter in the car (along with harrassment, nagging, backseat driving and too much profanity).

On April 30 we headed north from Virginia Beach toward Baltimore, via the scenic Eastern Virginia Shore highway. It was another 100 mile detour but was well worth it. We stopped at First Landing State Beach which is appropriately named as the beach where John Smith first landed in 1607. The beach was vast and crisp, with a long shoreline littered with homes on the coast and white sand dunes decorated with swaying grasses. We were in a perpetual rush all day, only allowing 20 minutes per stop since we had another 300 miles to travel. We made a detour to Chincoteague and Assateague Island, a national wildlife refuge, where we admired a 19^th century lighthouse, wild ponies, and migrating waterfowl, including a recently hatched baby bald eagle. Apparently ponies were abandoned by early Spanish explorers in the 1600’s and became wild. How amazing it was to see horses running freely in the marshes as we drove by.  The entire Eastern Virginia coast is known for its Native American history, its seafaring settlers and ranching settlements, and it’s prosperous marine industry. Our detour took us briefly into Delaware, where we passed quaint farmhouses and silos, charming colonial brick homes, sprawling lawns and long driveways hosting GMC pick-up trucks, and ranches dotted with cattle and horses. Back in Maryland, we rushed toward our Baltimore destination where we had a 7:00 pm booksigning. We sweat some bullets trying tomake it on time since we entered the metropolitan area of Baltimore just in time for rush hour and traffic from an Orioles baseball game. Isa changed into a nice outfit and put her make up on as I drove. At a red light, we pulled a “Chinese firedrill” and switched places so that I could prep for the signing. We had no time for dinner and made it to the  Baltimore Barnes & Nobles at 6:30 pm. It was in the heart of downtown, on the harbor, and parking wasn’t cheap. The massive bookstore was in a former power plant- it was 3 stories high and as broad as a supermarket.

Our booksignings so far have been so successful, that we wondered what it would be like to have one go bust. Well we had our first official failure of a booksigning, with the exception of the three gracious souls that showed up. We didn’t even bother giving our talk and reading. We realize that disappointment and failure is good for the ego- it’s humbling. However, as always, quality is more important than quantity and we spent the time chatting with the genetic counseling student, transplant outreach coordinator and CF/lung transplant recipient that did show up. It was wonderful to have one-on-one time with each of them and to learn about their lives in this area. Apparently the Univ. of Maryland Genetic Counseling grad school program had their students read our book as part of their curriculum and that inspired this student to come to our signing. She took a keen interest in CF and hopes to dedicate her career to it. We met a man named John who was 9 years post lung transplant and in the midst of adopting a child. How inspiring! And the community outreach coordinator from Maryland’s Transplant /Donation awareness organization came and displayed materials for passersby. Fortunately, the events coordinator at Barnes and Noble was understanding about the poor attendance, stating that this particular store had a hard time attracting customers due to its location and parking. We spoke for a long time about his interest in writing , academia and archeology. He gave us advice on places to eat the best crab cakes, our main wish for Baltimore. After the signing, we walked around the harbor looking for crabcakes but all restaurants were closed at 9:00 pm. Since we were staying with our friend Lorma that night we rushed to her home and skipped dinner. As Isa drove the 20 miles to Lorma’s house, I fed her granola bars and cold soup from our previous day’s crockpot cooking, trying to fill our stomachs before arriving at 10:30 at Lorma’s home. So much for Maryland crabcakes!

We spent the following morning visiting with Lorma and her mother. Lorma received a heart-lung transplant at Stanford Hospital in 2005, moving all the way to California from Maryland to wait for her transplant. She is now doing great- working part time and volunteering. She is a beautiful, loving, happy spirit. She too, was sick all her life with a congenital heart defect , and truly rejoices in this new life.

Eager to sightsee, we departed and headed to Washington DC. Our eating habits on this trip have been suboptimal and we had one thing in mind- a good meal. We went straight to the Smithsonian’s Museum of the American Indian where they have a fabulous cafeteria featuring genuine cuisine of Native American tribes. We pigged out on the Five Region Platter- jicama and pineapple salad from South America, buffalo from the Plains Indians, wildrice, cranberry and watercress salad from the Northern Woodland’s Indians, salmon from the Pacific Northwest tribes and greens from the Southeastern Seminoles. We also indulged in a seville orange salad with hearts of palm and nopales cactus. It was all home cooking, much of the vegetables grown right on the premises on Native American style farms. We swept through the museum, saturating our fatigued eyes and brains with as much native history and culture as possible. One of the exhibits focused on Native peoples today- their demographics, economics, and how many tribes are keeping their heritage alive. In my opinion, these are the forgotten minorities of the USA and we cannot overlook them. We saw Chief Joseph and Geronimo’s original rifles that they used in their battles and saw some of the original broken treaties used by the Bureau of Indian Affairs in the 19^th Century.  The thorough exhibits featured indigineous people from all over the world, not just North America. I highly recommend this museum. Although some people shy away from learning the reality of what our country did to Native people, I believe it is important to appreciate, remember and reflect that the second largest genocide in human history occurred in this country. Yet the native people have shown such resilience.

In a surreal daze, we saw the Capital building and the Washington Monument in the distance, amazed that we drove all the way to DC.  In front of the Capitol building was a huge demonstration marking the National Day of Prayer, with religious sentiment blaring out of loudspeakers and large signs protesting the war in Iraq, stating “Stop the dieing soldiers in Iraq.” Maybe if money wasn’t spent in Iraq, our schools would have more money to teach us how to spell.

We rushed to our next speaking engagement at INOVA, the largest CF and transplant center in Virginia. We spoke to about 40 parents, CF adults and children. It was well received and an honor to meet other CF adults who were just trying to make it in the world like us. We all shared a similar story. One 11 year old said “You girls are very inspirational.” How precocious and sincere she was! Afterwards there was left over food- scrumptious fruit, pecan pie, cobb salad, bread and drinks- and were were begged to take some home. That was another much needed dinner of veggies and protein. At 9:00 pm, we drove southwest toward Front Royal, the gateway to Shenandoah National Park. We had three large plates of salad and fruit in our laps, eager to devour them once we arrived.

It was our first and last night in a Super 8 Motel- the soundproofing was horrible and our room shook when the neighbor’s alarm clock went off at 6 AM. We woke exhausted, concerned that our gruelling schedule was taking a toll. We were sleep deprived and had eaten poorly and the backseat of the car was a disaster. We have officially given up on any possibility of a third passenger as the back seat is loaded to the brink with stuff. Again, we look homeless. But at least if the car broke down we could live in it for several days- food and water included.

As soon as we saw the NPS sign showing Shenandoah National Park, our fatigue disappeared and we revved into tourist mode again.  We began a 160 mile driving tour of Shenandoah and the Blue Ridge Parkway. I swore if Isa sang “Take Me Home Country Roads ” one more time I would scream. The scenery made up for it- we saw vast forested mountains, deep valleys of farmland and rivers, and rocky outcrops along Shenandoah National Park’s  105 mile main thoroughfare, Skyline Drive. As usual we were in a rush, stopping at overlooks for quick photos despite Isa’s mouthwatering appetite to hike. We did get in a short hike on the Appalachian trail and then later at Stony Man’s Overlook. I used my crutches up a 1.6 mile loop trail to a rocky overlook since my foot hurt like hell. We rejoiced in being there together, grateful to be on the Appalachian Trail (AT) again since we backpacked it in the Great Smokies with Dad in 2006 . In Stenzel tradition, we called dad from the peak to reminisce and wish he was there. We had a windy picnic of more tuna fish sandwiches, cold crockpot soup and wilted salad in Big Meadow, which offered breathtaking views of grassland, woods and endless sky littered with billowy clouds. Isa hiked to a nearby waterfall while I drove to the nearest bathroom for the usual excrutiatingly painful CF calling. Never a dull moment.

We were due in Charlotte that evening to spend the night with Isa’s sister-in-law (Mary) and the timer was ticking. We drove quickly through the Blue Ridge Parkway for only an hour, admiring more breathtaking scenery including blooming dogwood trees that peppered the green hills with white cottonlike flowers. We just didn’t have time to give the Park and its Parkway due justice. But it was still worthwhile to see.

It was dinnertime and we adhered to our boycott of fastfood restaurants. Using our GPS and Triple A guide, we found a pizza joint in the town 20 miles ahead and ordered a pizza for 3- for Isa, me and the 300 pound invisible man in the back seat with the prednisone appetite. We picked it up 20 minutes later and quickly consumed the entire thing. Isa fed me and injected me with insulin while I drove. So great to have a personal assistant!  Now that was a dinner! We threw the empty pizza box in the backseat to add to junk piled high enough to soon affect visibility. We arrived late at Mary’s home in Concord Mills, a suburb outside of Charlotte where new developments boast colonial homes for $250,000 and where NASCAR, BBQ and JESUS were big.

The following morning was the Great Strides, a nationwide fundraiser 5K walk benefitting the CF Foundation. We joined Team Breathe Deeply in Gastonia, North Carolina for the event. Mary’s friend, Amanda, who was inspired by our book, organized our team. Isa and I made a short speech prior to the walk for the audience of about 150 people. I was able to join most of the walk on crutches as Isa, Mary, Amanda and her partner, Evan, pushed Isa’s neice, Reese, in her stroller. Afterwards, we sold books and met many wonderful families, including a mother of 10-year old identical twins with CF. It was endearing to be called “sugar” and “mam” in thick Southern accents.  Teams like Hanna’s Hikers and Madison’s Hope were filled with parents and grandparents walking for their kids. What a refreshing feeling to see kids with CF again. Due to cross infection concerns, I have not been around CF kids for years and it was wonderful to see them again- their smiles, wide eyes, precocious awareness and resilience. I missed the years of holding their hands and hugging them at camp back in the day…  Some of the young kids had G-tubes (for tube feedings) and Port-a-caths (for frequent IV infusions) already at their ages, and it reminded us that CF can still hit young even in 2008.

We are on day 18 of our road trip and are admittedly tired. We spent yesterday at Isa’s sister-in-law’s home visiting and resting, which was a much needed break for our car and ourselves. We feasted on a lunch of Carolina pulled BBQ pork, hushpuppies and fried okra. We enjoyed playing with 2 year old Reese and watching as she attempted to communicate. She showed us all her dolls, naming each one and attempting to place them on Isa’s head. Her red hair pigtails and doll-like face were absolutely precious. It was most refreshing to take a nap and watch some TV!

We departed from Mary’s home on Sunday, May 4 and drove toward Raleigh. Once there, we set up camp at the local LaQuinta Inn and did our chores- sterilizing nebulizers, laundry, making saline for our sinus flushing, and making more bean,veggie and ground turkey stew in our crockpot for future meals. Somehow our $30 a day food budget is working out remarkably well, thanks in part to our generous friends, and conservative food habits (I am so sick of tuna fish sandwiches). Itching to exercise, we found a nearby gym - I lifted weights while Isa swam in what she referred to as a swamp pool. Our bodies have been extremely out of shape with all this driving and it felt great to sweat. I find that VA and NC are extremely spread out – it takes miles of driving to go anywhere- and there are few sidewalks. A local state park boasted its ATV trails and boating docks- but no mention of hiking or biking trails. No wonder there is an obesity epidemic- so much of our exercise habits are the result of the environment where we live and whether or not it fosters exercise. We have rarely seen public transportation, more evidence of the extreme dependency on cars that our urban planners have created. How can we blame people for driving and how can we demand that people be more “green” in such a town?

The evening in this Raleigh suburb of Cary, NC is quiet and peaceful- no stores are open and there are few cars on the road. We saw the sun set in the distance as we drove back to LaQuinta Inn, only to enjoy a crock pot stew and boiled macaroni in our hotel room. Nice to be “home.” Tomorrow is another day…

Thanks for your interest and patience in this very long posting.

Ana

Dear Faithful Readers,

Thank you again for taking the time out of your busy lives to read our blog.
Tomorrow we depart for our long road trip and book tour. We are frantically packing last minute details- John Cougar Melloncamp and Dixie Chicks CDs, japanese food, Isa’s bagpipes, car survival supplies, a crock pot for homecooked meals in hotels, GPS, wireless internet access, and of course, laxatives. As is typical for anyone with CF travelling, much of our baggage is medical/CF related ( I guess the same could be send metaphorically from psychological standpoint as well). I reflect on where I was a year ago- quitting work in April because of rejection- and where I am today. I can’t believe it. I was looking through my journal and came across a prayer I received by email last year this time. It reads ” ” God wanted me to tell you it shall be well with you this  year. No matter how much your enemies try this year, they will not succeed. You have been destined to make it and you shall surely achieve all your goals this year. For the remaining months of the year, all your agonies will be diverted and victory a nd prosperity will be incoming in abundance. Today God has confirmed the end of your sufferings , sorrows and pain because he that sits on the throne has remembered you. He has taken away the hardships and given you JOY. He will never let you down. ” 
It speaks to me now so powerfully and I feel so privileged. I can’t help but think God believed I had unfinished business for 2008. I feel so bad for all those having transplant and CF complications right now, struggling to survive while we roam free and make plans. I will certainly keep them in my prayers during this trip.

 New opportunities have opened up and we look forward to meeting new people and visiting new places on this journey. Already we have been showered with unbelievable kindness and generosity by people helping us with accomodations. We thank them immensely.
So we depart tomorrow, our spirits and hopes are high and are minds are focussed on driving 8000+ miles and praying for our health and our poor car. We’ll keep you posted of our travel adventures. Hopefully we’ll make it through the trip without bopping each other! There is guaranteed to be lots of bickering and nagging.

Wishing you all wellness in your own Spring journeys! Please feel free to keep in touch by email.

Love, Ana and Isa