Transplant Games Post #3, 7/14-7/17

July 21st, 2008

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

Transplant Games Post #2- The Big Day July 13

July 20th, 2008

Warning: another long post! BTW - Happy Birthday Modlin!

7/13Okay, let’s try this again. I just lost everything I wrote so I will start again. My Saturday night was sleepless and short. Remnants of my caffeinated snickers bar and power gel left me wired and so did my general anxious state. My mind was tormented with thoughts of diving off the diving blocks, pulling my arms straight back on the backstroke, keeping my legs together on the dolphin kick, and sprinting the 800meter.  Dad’s snoring in the bed next to ours and Andrew’s body pressed against mine in our small double bed didn’t help either. Sunday was my biggest day and the more I tossed and turned the more sleep-deprived and anxious I became. Damn head! I grew so frustrated that this nocturnal turmoil would impair my performance.  I should’ve borrowed Ana’s Ambien like I did the night before.

I felt silly, taking these Games so seriously. I am truly a fair person who believes in equal chances for all people. But get me at the start line of any race at these Games and I turn into a monster; I am ready to snarl and bite off the heads of the other competitors (of course in reality I always tell them ‘Good job! Way to go! You kicked butt!’ but inside I am really thankful when I beat them) What is wrong with me? Is this because I have male lungs, expressing molecules of testosterone from the Y chromosomes in my alveoli?  It’s not that I want to prove that I’m faster than others; I just want to prove to myself that I have potential to win.  Maybe God will humble me someday.  For now, I love my strength and revel in the ability to be competitive.  I confess I never knew I had such competitive nature until I was given the opportunity to be competitive. I am not proud of this trait. But this discovery is yet another one of the gifts of transplantation– to be able to uncover a side of oneself because we have the opportunity to explore new parts of who we really are.  It’s great to be alive.

I also had an epiphany. This day Ana learned that her friend Dawn had died. Dawn was waiting for a second double lung transplant and a kidney transplant.  She got called last week but it was a dry run, and her time ran out. When Ana checked her email, I could see her fighting back tears in front of my parents and Trent, after such a victorious swim on Saturday.  I know the guilt she feels for still being alive, for not understanding why she got this third chance and 35 year old Dawn didn’t, even when Dawn had a three year old to raise. It is heart-wrenching sadness.  Right before our IM races, we asked TeamRocky

Mountain where our friend Missy P. was. Missy and us have raced for 3 games in the pool- she has CF and is more than 10 years post-transplant.  Her teammate said, “She’s in ICU with rejection.”  Our spirits dropped.  Damn. I felt so bad, always seeing Missy as our rival and trying- just trying- to get as strong as this high-altitude athlete. I barely won the 100m breaststroke against her in 2006 and she won every other race.  She is also a great person and someone I bonded with as a fellow CFer. Now, I felt guilty for wanting to beat her this year, now that I know her predicament.  She reminds us that this moment is just this moment, so we must revel in it. Back to my epiphany.  Every day of my life I face news like I just reported. People around me getting sick and dying. People just like me. And sometimes I face my own minor road bumps expecting worse ones any moment.  Every single day I think about my own mortality.  I think about what I can do to prevent it, I think about how I can face it, I think about how to cope with the death of Ana and my close friends, or how to prepare Andrew for losing me. Death lingers in my mind constantly.  And hence the beauty of the Transplant Games. For ONCE, I can obsess about something else, something rather petty, actually, like my stroke technique and my times and how to put my goggles under my swim cap so they don’t fly off when I dive in the pool.  I can measure my strokes from the flags to the wall and just focus on that, and only that. During training and the Games, nothing else matters except my performance, my time, in the moment. The past and the future are insignificant.  What a perfect escape.

So, I woke up finally on Sunday morning, when Andrew’s alarm clock went off so he could run the 5K. I decided not to join him, and felt bad for not supporting his only athletic event at the Games. Dad got up shortly thereafter and joined Andrew for a nice run.  I didn’t want to bother with finding the start line in this confusing city and rushing back to get to the pool by 9:30am.  I was just too tired and needed to spare my energy for the big day.  Instead, I tossed and turned since 6:30am, until Andrew returned with my Dad at 8:30. I’m proud to say Andrew got his best time ever- 27 minutes! My 68 year old Dad came in shortly thereafter! I am so grateful for their health.

 We got up and I had a small amount of granola and yogurt in the hotel. I was already nauseated from nerves. I changed into my swim suit and grabbed my kilt, plaid, and doublet costume, and by 9am we all head out and packed into the SUV we rented (God forgive) and headed for Carnegie Mellon University.  Four of us packed ourselves like sardines in the backseat, without seatbelts, and thankfully no cop stopped us.At the pool, I dove into the practice pool after dumping my stuff off. As if my heart rate needed to be higher, I took another few puffs of albuterol (the nearby official looked at me sympathetically and said, “I’m glad you can be here,”- hallelujah). I sucked up a power gel and ate half a caffeinated snickers bar, just what my ill stomach would allow. After a few laps of backstroke I remembered how much I hated backstroke and wondered why I was doing this. Okay, I just signed up for this one month earlier, after I learned that I would be piping at the Donor Ceremony and had to pick a morning race instead of the afternoon 50m butterfly I originally signed up for. I only trained for a month, and hated the feeling of aspiration I’d get from the backstroke.  The worst was the underwater/upside-down turn where inevitably I’d get water up my nose and cough out water clogging my throat.  I had three turns in the 100m… At least when I was swimming fly/free/breast, I knew where air was and where water was. With backstroke, I panted like there was always air, but splashes of water would go up my nose and mouth, making me feel like I was suffocating.  I didn’t want to aspirate and I didn’t want pneumonia. Now, today, in the practice pool, it was all about staying calm.  I reminded myself to focus, go easy on myself and breathe deeply. I talked to Xavier and thanked him and God for this joyful gift of racing in the pool.

Time passed quickly and it was time for my 10am backstroke race. I lined up as directed and walked to my lane.  I could see the Byrnes and Stenzel family in the bleachers cheering me on.  The whistle blew and I jumped into the pool and grabbed the handlebars.  I heard “Take your mark,” and then the buzzer. Once again I hesitated, and only when I saw the other swimmers take off, I kicked with all my might and flew backwards into the lane. Damn! Another late start! What’s my problem? But I dolphin-kicked hard and made it past the flags before resurfacing and sputtering water out of my nose/throat. I pushed as hard as I could and before I knew it I was at the end of lap #1, and had to do a torturous turn. I pushed and pushed and gasped, vocalizing a panic, feeling no air go through my lungs. This brought me right back to the panic I had in ICU.  Calm down, calm down, I told myself. You can breathe. There’s nothing wrong with your lungs. Pushing aside my negative thoughts, “I hate this, I hate this,” I focused on breathing steady and swinging my arms as hard as they’d go, pushing me through the water. Another backwards turn, kicking underwater for as far as I could go until I surfaced, another round of sputtering, spitting, strange sounds coming from my mouth. As I approached the last turn I could see my dear friend Paul Yang yelling and cheering me on. How I needed him! He bent down, yelling my name and Go! Go! Go! (Paul is Taiwanese and 20 years post-liver transplant; we do a lot of Asian organ donation stuff together). Towards the end of my last lap, I was so breathless and suffocating I had slowed down significantly, and told myself, “I’m probably not going to win so I can take it easy.” I slowed down and made it to the finish, only to turn around and cough violently into the pool gutter, trying to clear my precious lungs of the chlorine I’d inhaled. I glanced up at the scoreboard. I saw two 1:45’s and my score was 1:44, and one more was 1:39.  Andrew said I got second, at least in this heat, and I believed him.  Thank God, I might get another medal.

Okay, I survived my first race of the day! I got out with a bit more confidence, though my legs still trembled.  I recovered and was kindly supported by strangers and family.  I found Nancy (kidney recipient, 2006 relay winner with us, and 1998 female athlete of the year!) and Ana who were warming up for the women’s 200m medley relay. We tried to find Lara but couldn’t, so I called her cell. She was on her way. They said the relays would start at 11, but then they said after 12, but then they changed it to 11.  Lara arrived close to 11, so she barely had time to put on her swim cap and jump in the warm up pool for 2 laps before lining up. It was too late for a substitute; she was going to do it. “Remember, look at the line on the ceiling to keep straight! Small, fast kick- save energy that way!” Ana and I barked orders to her still just minutes before her race.  I knew she could do it because she was a sprinter at heart. Lara got into the pool and held the diving bars. At the buzzer she flew back and sprinted IN A PERFECT STRAIGHT LINE all the way to the end of the pool! She was in line with all the other swimmers, and made a quick and efficient turn, and head STRAIGHT BACK to the end of her 50 in competitive speed! She seriously kicked ass! This is 85 pound Lara (if that), who has overcome so many challenges and scares, whose hotel room looks like a hospital room, who has done IVs for the last 1 1/2 years, who does nebulizers like she has CF, and who struggles so much pre- and now post-transplant. And now, I was screaming my head off, cheering her on to the finish.  I WAS SO PROUD OF HER!!! As soon as she touched the end,

Nancy
flew off the diving blocks for her speedy breaststroke. I grabbed Lara’s arms and PULLED her up from the pool, and she was so light. Before I knew it,

Nancy was heading back and I just DROPPED Lara on the side of the pool, and jumped onto the diving block. Meanwhile Ana was screaming her lungs off cheering Nancy and Lara who was writhing on the pool deck trying to get up.  Then I took a few deep breaths, looked at the ceiling and praised God, and watched carefully as

Nancy neared with her torpedo-like bobbing motions.  The moment her thin fingers touched the pool edge I dove in with all my might; thankfully the goggles stayed on.  I dolphin-kicked hard and wriggled underwater for as long as I could and then my arms flew hard under my chest, pushing the water with all my strength to propel me forward. I pushed my hips up and down and kept my neck straight, barely lifting my chin for air. It was another out-of-body experience. I was being lifted through the water, my muscles moving automatically. There was no attention to my form or whether my legs were together; I just bulleted through the water as hard as I could. I relied on my anaerobic training and didn’t even think about whether I was getting enough air. At the end I could hear cheering and saw bodies bent down yelling my name. I quickly turned, for a moment gasping air, then dove and kicked hard and writhed underwater again past the flags.  Before I knew it, I was nearing the end and gave my finally push only to see Ana dive overhead as I touched the edge of the pool. Oh God, thank God, I did it.  Couldn’t breathe, but I did it. And I chose this. I looked up and Nancy and Lara were screaming and cheering me. I had more power in me; nothing burned and I was amazed at the effectiveness of the power gel that fed my muscles. I joined Lara and Nancy and screamed my head off as I saw Ana charging past the other swimmers and coming in great speed toward the end of the pool. It hit me she was ahead. For a moment I got teared up! That’s my sister! That’s my sister, just like I said in the 2006 video! This was Ana, swimming with a new set of lungs placed in her ONE YEAR AGO at this time, and she was sprinting to the finish line, despite getting her cast off one month ago, making Team Nor Cal come in first place! Then it hit me and I screamed, “Oh my God! Oh my God!” I looked to Lara and yelled, “Lara! Lara! You FUCKING won a GOLD MEDAL!!!!!!” We hugged and caressed and I said fuck cross infection for a moment because this is the moment when life is at a climax and nothing matters but celebrating this momentous victory!!!! Wow! Nancy and us embraced and as Ana got out of the pool we smothered her and we all screamed and hugged and cheered in disbelief! How did we win?  How could Ana win for us after all she’s been through this past year?! Because the strong make a strong comeback! Because Lara took a chance to swim- first time in 7 years-, because we let her and wanted to swim with her (our comrade in CF and transplant for 6 years), accepting it didn’t matter if she might be slower and we wouldn’t win because sportsmanship and team spirit is more important than winning! It was like just for a moment Nancy (who’s had a rough year), Ana and Lara were all rewarded for their suffering in this fabulous redemptive moment of glory.  Once in my life may I put aside humility and say, we women of Team Nor Cal kicked serious ass.

 Okay, deep breath. My next stress came when I couldn’t do my 50m breast because they changed the times to 1PM from 11:15am.  I signed up for it knowing I could fit it in at that early time; but now I pleaded with the official in charge about how I had to go to the Donor Ceremony to play bagpipes and had to be there at 1:30. Fortunately, she let me swim at 12:30pm with the 200m free swimmers. I rushed to the awards ceremony and gratefully let my precious mother place a silver medal over my head for my backstroke.  I promptly removed it and placed it over her; the least we could give her for her deep love and commitment all of our lives.  The girls and I were soon called for our gold medals for the relay and we cheered and screamed “Go Stanford!” on the podium! What a celebration, just like in 2006, but this time it meant so much more given the challenges since then.From the awards ceremony I rushed back into the practice pool, hyper and full of adrenalin, only to do a few laps before the 200m free heats were called. I kept telling the officials, “I’m listed for 50m breast, right? Right?” My name wasn’t on the screen but I was a last minute add-on.  Before I knew it, it was time to get on the diving block and give it my one best shop.  At the buzzer I spazzed out with all the ATP my muscles could handle and kicked hard and pulled hard for the fastest breast stroke I could possibly muster. This is my strongest stroke, and the 50m was nicely anaerobic so I didn’t even start to panic about air. Before I knew it, it was over. I made it to the end in 45 seconds. Everyone else was still swimming their 200m frees. I got out with an expletive, confirmed again this was my 50m breast and ran to shower and change.  I was done with swimming! Now onward!

I rushed to comb my hair and reminded Ana to check my time when the real 50m race occurred at 1pm to see if I had a chance. She was staying with

Trent so she could do a 50m backstroke and 50m butterfly.  I ran out to meet my parents and Andrew and rushed to Heinz Hall for the Donor Recognition Ceremony.  In the car, I put makeup on, Mom combed my horsehair sporin, I wet my reed and assembled my pipes and I put on my red high socks, shoe, and spats. In the messy car I couldn’t find the other shoe! In 20 minutes we arrived at the front of Heinz Hall, and Andrew pulled over. I got out of the car in my black shorts and tank top and one shoe, and on the sidewalk pulled out my kilt and proceeded to dress.  A girls’ gotta do what a girls’ gotta do!  Andrew tore through the back trunk looking for that damn shoe, which was no where to be found. After I reasonably dressed myself, I walked lopsidedly into the hall while Mom and Andrew drove away to look for my shoe (or get mom’s black shoes) in the hotel room.  Dad and I walked backstage and I gave him instructions to help me tune; he nicely obliged. I don’t even know if my Dad is tone-deaf, but it sure was wonderful to have a calmer moment, just him and me, and my pipes. He held the tuner as I played and he nodded in agreement. He worked on my plaid (the long big blanket that gets tied over the shoulder). He said encouraging calming words and then left to sit in the front row. I practiced a little more to get my reed nice and easy to play. I was sweating profusely already in this heavy wool outfit, and obtained my glucose from the Gatorade I was drinking.  Luckily Mom and Andrew arrived backstage, saying they found one shoe still in my suitcase! Thank God! Woops.  I went to the bathroom and met Larry Hagman of

Dallas
on the way (he’s a liver recipient). 

I then was instructed to go to the front and wait for the ceremony to begin. At the front of the hall, I met the crowds of donor families who were coming in. Many asked to take a photo with me. I felt like a celebrity, all because the bagpiper’s outfit looks so incredibly spiff.  Soon most of the crowds were seated and I was instructed to line up in front of 4 organ recipient children who carried large cardboard hearts with messages of love and grief from every donor family participant. All of us lined up in front of the doors, and despite a false start, finally the official opened the doors and I started to play Amazing Grace as I walked down the aisle. I felt as nervous as jumping off the diving block, except this wouldn’t end in 45 seconds! My fingers trembled, and I squeaked once-woops- but then focused on this glorious moment. Donor family members leaned over, many of them crying, as I solemnly passed them in honor of their gift, with deep appreciation of their loss, with great admiration of their courage. In front of me flashes exploded constantly so I couldn’t see straight, and just focused on the ground in front of me. I tried not to pressurize the bag too much for a shrieking high A and just tried to stay calm. Then I came to the end of the aisle and had to walk up three very steep stairs to the stage. I slowly went up, pausing in line with the music, and trying not to get breathless. I made it to the stage and played Amazing Grace twice more, looking out into the sea of donor families staring at me.  The lights were bright and my legs trembled. Wow. I’m doing this, Xavier is doing this! I played until all the hearts were placed properly on stands on the stage. I stopped without a hitch. Then each kid went up and announced their organ and gave thanks. It was my turn after all the kids and I said something like, “My name is Isabel Stenzel Byrnes and I am received a double lung transplant 4 years ago.  I chose to learn to play the bagpipes because I wanted to celebrate having healthy lungs for the first time in my life.  The sound is very loud and each time I play I feel like I am screaming to God, I’m alive, and so it the spirit of my donor Xavier.  He lives on. Thank you to all donor families for giving the gift of life.” Then I walked off with the children, and found my seat next to Andrew. The rest of the ceremony was a touching collection of moving songs and music, and a tearful slideshow of so many beautiful, young donors whose lives were cut short. Then each donor family came up to collect a medal. It was so sad to see a woman and two children and see who was missing; or a couple and one child; who were missing another child. Most donors were so young, most were male, who probably died tragically but shared their healthy organs with us. At the end of the ceremony, I ran outside and played a few more tunes for people exiting the building. This is a tradition for pipers- to bid farewell to the crowd.  Many people stopped to take photos. After 5 minutes I was sweating like I’ve never sweat before. I kept playing until most people were outside. I made some horrible noises, but I didn’t care.  This was my gift to these families.  I was blown away by the reception. So many people loved the pipes (those who didn’t left immediatelyJ). I felt rather self-centered to play the pipes at this event, but the comments from the donor families made me feel like it was the right thing to do. People shared how they had pipes at their loved ones’ funeral. One father shared that he took his son to

Scotland before he died, and that his son always wanted to play the pipes. The stories people shared were so touching.

Eventually I was starting to feel dizzy and had to leave. I started to worry about the dry cleaning bill! I walked back to the hotel carrying my pipes and sweating some more, and then jumped into the shower.  I flaked on Tiffany, our track relay partner, who wanted to practice the baton pass for tomorrow. I just didn’t have it in me. Besides, Lara called me with a portacath emergency and I went to her room to help put her port needle in. This woman is so strong!  After her swim race, she has to deal with so much medical shit I would never imagine she was ’sick’. A reminder for me to stop complaining… It was an honor- a form of intimacy- to place the needle in Lara’s chest.

I met up with Ana who had just won a GOLD MEDAL in 50m backstroke and a SILVER in the 50m butterfly!!! That’s as good as she did in 2006! I was in disbelief of her strength, and thrilled for her, and it seemed like nothing happened between the 2006 and 2008 Games!  But I was annoyed that Ana completely forgot about my 50m breast stroke results.  Of course, Andrew got right onto his blackberry to check the times of the top 3 women in the 50m breast, and saw the gold came in after 45 seconds. He got on the phone right away to argue with our team manager that I should’ve gotten the gold. Thank God for such a wonderful advocate, because this is the self-promotion I couldn’t do.  I hated to be greedy but felt if my time was indeed faster it should be acknowledged. But the last thing I wanted was to take a medal away from someone. 

 My family rushed to the local Buca di Beppos for a family dinner. It was a wonderful gathering of the entire Byrnes/Stenzel gang and several friends from near and far who came just to see us at the Games. I sadly missed a few friends who couldn’t join us. I carbo-loaded on massive portions since this was my first real meal of the day! We held our glasses high and toasted to so many celebrations: our medals, my ten year anniversary with Andrew, Ana’s successful 1 year re-transplant anniversary, the retirement and hard campaign of my father-in-law, our book’s acceptance for Japanese translation, and so many big and small milestones for each member of our dinner party. After a dinner, I could let out a big long sighhhhhhh.  I felt so relieved to finish my swimming; holding my breath during exercise was over. I could relax in the pool, and resume this training in January 2010.  I went to sleep that night without Ambien, but just totally spent and exhausted. What a day. I had survived. I was delirious yet high, and images of our swim successes and my first bagpipe solo were rerunning through my mind.  Yes, I still felt nervous about track the next day, but I was filled with a satisfaction for all these healthy lungs have allowed me to do. It was a grand day.I am sorry this is such a long post and I’m sure Ana will chastise me. Again this blog is for my own memory as much as for your review. I want you all to feel what I’ve been through, so you can be there even if some of you physically cannot be. Your friendship contributes to my spurts of energy that have allowed this day to be.I will continue tomorrow again. Have a beautiful weekend. Thank you for your patience for my wordiness.Love Isa

 

Glorious Games in Pittsburgh! Day 1 and Day 2, 7-10 and 7-11-08

July 18th, 2008

Dear Friends,
Once again, I appreciate you checking this blog to see if we’ve written. You are gently encouraging me to document my everyday experiences so that I do not forget the significance of each moment. There are many powerful moments to share from the last few days.

Today I safely returned from Pittsburgh, PA alone, while Andrew flew to a business trip and Ana and Trent continued on vacation in Washington DC. I am sitting on my couch, struggling to find the words to explain the depth of my experiences over the last few days.

In a nutshell, Pittsburgh was beyond our dreams. Where do I start? Everyone was healthy and stayed that way during the Games. My family was all together except for my brother (I hope he comes some day). Ana and I performed our best, and the competition was less intense this year, resulting in some reward for both of us. Everyday was sunny and warm, but not too warm. There was some traffic/construction but overall Pittsburgh was easy to get around. At the Transplant Games all kinds of people came up to us and greeted us, many whom we remembered from prior years and some whom our prograf brains have kept us from remembering:). People were so friendly to us! Maybe this had to do with the fact that we were in the 2006 Transplant Games video and put on a poster. Actually the same shot of Ana and me hugging was placed on a huge banner and also on the cover of the program. When I first saw that, I thought, “Thank God Ana lived.” If she had died last year, I couldn’t even bear to look at that picture. My point is that perhaps people knew us because of that shot. Also, we are two of a handful of Asian athletes so we are easy to identify. But overall, we were welcomed into this large yet intimate crowd like family. This is Ana’s 4th Games and my 3rd, so we have the pleasure of building stronger friendships each returning year. I am so grateful for the connections we have made at the Games.

Okay, let me jump back a bit. Andrew and I arrived in Pittsburgh late on Wednesday night, 7/9, and stayed at the local Days Inn. We had a late night meal at Applebee’s which, like the hotel room, left much to be desired. The next morning we drove to Erie, PA., where Andrew spent one year of high school after his parents moved to Edinboro during his high school years. We met his influential 11th grade teacher Suzanne, who treated us to a delicious and filling meal in her cozy home. Andrew reminisced about transcendentalism and his life, and I got to know this very inspirational teacher who truly lives…. (I mean, anyone who had ridden a Harley across the country and has her own jewelry business takes life by the horns). After this meal, we drove onward to the town where Emmett, Andrew’s best friend from his high school year, lives. We passed the run down factories in Erie and it all reminded me of the movie “Roger and Me” and the demise of American manufacturing. We checked into a simple motel and then met Emmett and his sweet Japanese wife and their half-Japanese girls. We were treated to a delicious tonkatsu dinner while Andrew and Emmett caught up on 19 years. There are very few Japanese in Erie and I was shocked to hear that all the Japanese food we were eating was shipped by Emmett’s in-laws in Japan! While it was delicious nonetheless, I could never live in a place like that…

Anyway, I truly enjoyed the warm conversation. A sign that Andrew and I are meant to be because his genuine, conscientious friends who reflect on life and are living the best lives they can are like the friends I’d like to have. After dinner, Andrew, Emmett and I took a walk along Lake Erie and watched the sun set late through the cloudy sky. Smokestacks in the distance added to the grey clouds, and my eyes gazed out at the vast ocean-like water of Lake Erie. We hummed Gordon Lightfoot’s “Wreck of the Edmond Fitzgerald.”

The next day, Friday, 7/11, Andrew and I got up early and drove 140 miles back to Pittsburgh. We checked into the Hilton and gathered some goodies to bring to set up our booth at the Transplant Games EXPO. Ana and Trents’ flights were apparently severely delayed (bad weater in Chicago) so they arrived at 4am instead of 10pm the night before. While Ana slept, I met with Tiffany Christensen, author of “Sick Girl Speaks,” (www.sickgirlspeaks.com) and set up our “Creative Expression and Transplantation” Booth. We set up photos from Michelle Compton’s “The Breathing Room” exhibit (www.thebreathingroom.org) and put out our book and flyers. While we weren’t allowed to sell our book, we welcomed this opportunity for publicity at the Transplant Games. Tiffany was such a great sport and took charge of the booth while Ana and I fulfilled all of our Team Nor Cal commitments.

We left Tiffany and rushed to Carnegie Mellon University for swim practice. It was a nice 9-foot deep indoor pool, not too cold but somewhat claustrophobic in the hot greenhouse-like glass building. I had to calm myself even while practicing. We met up with Lara, our dear lung transplant CF friend from Stanford. She hadn’t been in a pool in 7 years, and not since her transplant. We were going to coach her on backstroke for the swim relay. She was on IVs and removed her port needle just for practice. Now that’s dedication! She wore my swim cap and goggles and floundered about in the pool. Luckily for all of us, it was a yard pool. Her first 25 yards were great but then she was so winded she had to rest. On her way back she zigzagged across from one edge of the lane line to another and Ana and I glanced at each other with concern. We barked instructions to this poor woman who was pressured by the competitive Stenzel twins and probably didn’t have the heart to say no, she didn’t want to swim the relay. But Lara was such a good sport. In several laps with changes in her technique, she improved drastically and was able to swim 50 yards with a good pace. We felt to grateful to all be swimming together, after all the tough CF and transplant roads we had walked along together. I still remember Lara at her first transplant support group, 1 1/2 years before my transplant, and I remember her in ICU. She remembers the support group where I was end stage and there was little hope. And now, we were swimming together! Ana and I met our fellow swimmers from years past, who intimidated us with their strength but we were all warm and supportive. That is good sportsmanship. Best of all, we swam with Laurie S. from CTDN, a wonderful dream.

After swim practice, we rushed to our Team Nor Cal dinner and met up with all of our enthusiastic teammates, our families, and all of our friends. It was so exciting to finally be here. We ate like Americans- fried mozarella sticks, chicken tenders, pretzels, salad (!), shrimp alfredo and Team Nor Cal white cake. What is wrong with American food!!!?? It was lard-loading rather than carbo-loading. My stomach paid the price that night.

The following morning, 7/12, we woke early to join Team Nor Cal for our team photo. We then toured the EXPO and picked up free samples of water bottles, fans, chapstick, sticky pads, bags, frisbees, seat cushions, etc., all adorned with medication branding and all thanks to the American medical industrial complex! I am so glad the makers of my medications sponsor the Games, but I’d gladly give up my branded frisbee for a cheaper copay… Anyway, I joined Tiffany to man our booth and welcomed many friends who came by: Paul F., from USACFA, Joe S., and his wife, who is one of the two twins from Georgia who both had heart transplants, Kim J., our dear online friend, fellow teammates, our donor family friends from prior Transplant Games, etc. So many familiar faces and so much love among these people from all over the country! In the chaos of the EXPO, it was so comforting to glance over and see Tiffany’s enthusiastic smile next to me. We were in this together.

Around noon, Ana and I rushed off to the pool to swim the 100 yard Individual Medley. We barely got there in time because they re-arranged the times of the races. The Byrnes family was not informed and we swam before they got there! We basically arrived, changed, jumped into the practice pool and then it was time to compete. Oh, our nerves were so high! I had eaten a caffeine-filled snickers bar and power gel, but could not eat lunch because my stomach was nauseous from nerves. Ana and I were placed in adjoining lanes, and climbed the diving blocks. At that time I looked up to the ceiling and thanked God and Xavier for this opportunity; the outcome of my race was up to them and only them. It was a moment of surrender.

We heard the dreaded loudspeaker, “Take your mark” and then the buzzer. I wasn’t sure if it was a false start so I delayed jumping in for a split second. When I saw everyone else enter the water, I kicked off. Woops. Then my out of body experience started. All the technique and form goes out the window; even the breathing. All I know is that I moved as fast as I could and focused on getting to the end of the pool and back. Fly. Back. Breast (where I moved ahead). Free. Before I knew it, the race was over. My muscles didn’t burn, but to say I breathed heavily is a gross understatement. I saw Ana swimming freestyle in the lane next to me and I started screaming. She was coming!!!! She charged through the water, not the fastest but darn fast for someone who, one year earlier, could hardly move. When she reached the end I held my hand out and she embraced it. We did it. We swam the IM for the first time, together. God, we are lucky.

After the rest of the age groups and men completed the 100 IM, it was time for the 400meter. Since this was a yard pool, they changed it to 500 yards. That is TWENTY laps! Not 16 laps but 20! And Ana masochistically signed up for that. She dove in, still tired from the IM, and swam strong at a steady pace the entire time. I was amazed. She had great form and didn’t hesitate at the turns. She swam with the same strength and determination she had that got her through her second transplant. She completed it around 11 minutes. Not bad!!!! I screamed til I was hoarse.

Some men had a really hard time. Some had to turn on their backs and paddle. One man hung to the lane line. The harder the effort, the more the crowd cheered. Some men stopped at each lap to catch their breath. For one man, a heart recipient, after the first two laps it seemed he was going to pass out, or quit, or both. But after a significant pause, he would get back on his back and keep going. One lap after another he would stop, recover and continue. The crowd roared and cheered at each lap, yells of “Go, go, go!” and “Keep going!” gave him the energy to remain bouyant. This man was pale white and I was worried for him. It took him 20 minutes to swim 500 yards. Later he explained that his heart rate wouldn’t increase despite his muscle movements; that is the disadvantage of heart recipients. But, HE DID IT. His wife and kids were in tears when he finished and stumbled out of the pool. This was the greatest example of determination and inability to quit that I’ve witnessed this year at the Games. His drive made me feel like I could push through any challenge that comes ahead.

After the 500 races was the award ceremony. I was very blessed to receive a silver medal in the IM. I was content; all I wanted was one medal in these Games.

I don’t mean to be graffic here, but let me share a beautiful moment in the ladies locker room. Women of all ages, shapes and sizes are gabbing about their performance and their satisfaction at completing their races. They share their surgery histories- the what organ/when questions are answered along with statements of amazement and gratitude. Best of all, we all walk around bearing our scars without any embarrassment. The size of the scars reminds us who among us are the walking miracles; we all are but some are more than others. There is a freedom here I don’t have anywhere else. These scars are our badges of courage.

We rushed to a quick dinner at Panera; my poor family was starving without lunch all day. They weren’t fueled by adrenalin like I was. We then rushed to the Opening Ceremony at the Convention Center. Yes, it is strange to have some swimming events BEFORE the official opening ceremonies, but that just happens each year because of scheduling….

All athletes lined up backstage in our team t-shirts/uniforms. It was great to see lung recipients Lara, Stacey and Tom M. holding the Team Nor Cal banner. We were all together at the Games! What a celebration! As we entered the stage, Ana and I blew bubbles and cheered. I walked in the back of the group so all the new people could have a chance for the grand entrance. I walked with the ranks of Nancy L., Tom G., Paul Y., all the old-time Team Nor Cal athletes who paved the way for Ana and me at the Games. What an honor at my third Games, to join the ‘old timers’.

The Opening Ceremony consisted of this procession of each team, then the moving entrance of hundreds of living and deceased donor families carrying donor quilts. After the procession, there were speeches and talented musician organ recipients who sang. There was the carrying of the Games torch by last time’s “Athletes of the Year” and the attempted lighting of the actual torch, which didn’t work. The Opening ceremony ended with the recitation of the Athlete’s Oath for good sportsmanship and with the the four powerful words, “Let the Games Begin!”

I returned to my hotel room later than desired, still wired on caffeine. With my dad’s snoring and my nerves for the next day full of activity, I downed 10mg of ambien and prayed for a good night’s sleep. I hadn’t slept well in days. The next day was going to be my hardest.

I will write more tomorrow. I am tired and it’s 1:30am EST now. Good night for now. Thank you for re-living these days with me. I wish you were there with us at the Games. Thank you for your support.

Have a great Friday.
Love, Isa

July 10th, 2008

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

Happy Independence Weekend 7-5-08

July 6th, 2008

Dear Friends,
Thank you for continuing to read this. I am truly humbled that you have interest in learning about what is going on in our lives!

I hope you all are enjoying your July 4th long weekend. It is a great feeling to stop our busy lives and reflect on the joys of summer, and the gratitude I have for the freedom of this country.

Yesterday was a wonderful day. Some of you may know I have learned to play the bagpipes, and joined the San Francisco Stewart Tartan Pipes and Drums. I’ve gone to practice every Tuesday night for the last 1 1/2 years. It is a warm and welcoming group of people, even for those without Scottish blood! So, on July 4th, was a reward of my practice. I marched in the Piedmont (small town near Oakland) Parade! It was a short parade less than a mile long, but we played 6 tunes and I played 5 of them! Last year, I only played one tune! This year, I just haven’t memorized one of the 6 yet! It wasn’t too hot either, so sweat did not blind me like it did last year. Our band had to learn interesting formations where we criss-crossed through each other mid-song, and slow-marched and then sped up, and with my prograf brain damage it was quite a challenge to focus on the music, the movements and the pipe major (conductor)! The crowds loved us, even as little kids covered their ears as we passed. In the middle of the parade I had an out of body moment. Suddenly I felt like I wasn’t really me; like I was dreaming. I kept asking myself, “How did I get here? Is this really my life? What am I doing, piping in a parade?” I just remember living in the East Bay, in Berkeley near Oakland, and being so sick with CF, that the area itself just reminds me of being short of breath. And now, ten years later, I am marching in a parade down the street, blowing my brains out into a loud bagpipe, screaming to God and the world that I am very much alive. What happened?

The greatest joy is that near the end, I recognized a short skimpy dress and saw Ana in the crowd taking pictures. She was there with my two closest friends from college, and their families, along with Andrew. I kept my stoic bagpiper face and avoided the distraction of smiling and marched ahead. But it warmed my heart to know Ana was watching me pipe in this parade. Last year, my uncle and aunt visited us when Ana was so sick she could hardly walk. I think he came down to say goodbye, actually. We had a barbeque at our home, and Ana was so miserable. Now, she got to see my march in this parade.

Funny story: Ana was stopped by the Puritan fashion police, people dressed up in colonial outfits, and cited for “indecent exposure and inappropriate dress!” She received a ticket and then another one for ‘excessive laughter.’

We truly enjoyed going to lunch with our college friends whom we have known now for half of our lives! We played with and held their kids and reminisced about our days at Stanford. It is so wonderful to grow old together! We enjoyed ice cream sundaes together, a treat of July 4! Never mind my sugar was 364 when I got home. The marshmallow cream was soooo worth it.

After a perfect nap, in the evening, we went to Ana and Trent’s home to enjoy a BBQ. The two of them prepared enough food for 20, although only 7 of us ate. We met Trent’s friends and enjoyed warm conversation. In the night, Andrew and I drove up to our local community college parking lot and overlooked the Bay and the distant firecrackers. I insisted on going- because there is only one July 4, 2008 and we are both alive and well now, so we might as well enjoy the tradition of the firecrackers- even if it’s old hat.

These days Ana and I are re-living the moments of one year ago- how she used a wheelchair, how she couldn’t move, how she went to a party and took her oxygen off briefly because she was embarrassed and then nearly passed out, etc. It is absolutely miraculous that we went swimming today and raced a 50 m butterfly. I cannot believe that she was re-transplanted. One week from tomorrow is her one year anniversary. I didn’t even swim butterfly until I was 3 years post-transplant, and Ana is flying like it’s no big deal.

It is bittersweet to share this good news. Today was my friend Siobhan’s funeral. I didn’t go because I was feeling so exhausted all week and just needed to listen to my body and not drive 3 hours one way to see her family. This is my new decision to pace myself. I really wanted to go but I had to set my limits, and be selfish, given the upcoming events next week. And Ana’s good friend with CF/transplant was placed on a ventilator today, so I kindly ask for your prayers for Dawn. She is on the top of the list and we are all hoping and praying for a miracle. Sometimes I don’t know what the point of praying is, because I feel like each person’s life will unfold how it is meant to unfold. Prayers just seem like our own desire to control the situation. God didn’t listen to Siobhan’s prayers, but he did for me, for Ana and for many other lucky ones. I hope he listens to those praying for Dawn.

Another person whose prayers were answered today was Rich D. Today is his 40th birthday!!!! He is proud to be an old man:). I went briefly to celebrate with him in San Francisco. It is such an amazing feat when someone with CF lives to 40 without a transplant! Rich writes for the CF Roundtable, a wonderful newsletter that I highly recommend. Rich is hanging in there and quite strong, and one of his many assets is that he is an extremely likeable guy and is therefore surrounded by loving friends. That is the best medicine to help someone reach 40! Hooray, Rich- I wish you many many more birthdays ahead.

Another miracle- today my friend Joyce celebrated her 8 year heart-lung transplant birthday and is thoroughly enjoying her 5th decade of life! Yes, she was called for transplant on her birthday- what a great gift, eh? You go, girl! I am so happy to grow older with my transplanted buddies. Wow.

In five days, Andrew and I will be leaving for Pittsburgh to attend the US Transplant Games. A group of our team, Team Nor Cal, were interviewed by our local sportsman, Mike Shumann (a former 49er) on the ABC Channel 7 news on Wednesday. It will air on the Monday July 7 6pm news. We swam at the challenging 50m Stanford pool and ran around the track. It was a blast. If you are local, please check it out.

Okay, now I confess that the last week or two I’ve been a basketcase. I’ve been training like crazy, and I am frustrated that I am not faster. This is as good as this body gets, so close to the Games, with my limited training sessions since our road trip. I remind myself to just be grateful I can even be athletic! But the burning and breathing and struggling is so, so, so hard. I panic easily in the pool and have to breathe very hard. I have so much fear that something is wrong with my lungs because I breathe so loudly and my airways collapse causing this weird stridor sound. I fear that something bad will happen before or during the Games. I remember how strong Ana was in 2006 and how she fell apart shortly thereafter. So I am superstituous that something like that could happen to one of us after these Games. Every little chest pain or breathlessness makes me think this is the beginning of the end. If I can’t improve my time on the 100m backstroke (backstroke’s like a test of aspiration, by the way), there must be something wrong with this body! Oh, the fear! It is so easy to be overwhelmed by it. What is wrong with my head??!! I recognize some of it is normal. Some of it I must consciously control. I can’t focus on this invading thoughts of fear. I must let go, relax, and celebrate this moment here and now, because all is good right now. I trust others with CF or post-transplant have similar experiences. I know Tiffany wrote about it in her book, “Sick Girl Speaks.”

Andrew and I were driving home from the gym and I was lamenting how painful my sprints swims where, and I kept asking, “Why, why, why am I torturing myself?” He pulled down a photo button I have of my donor Xavier from my sunshade and said, “This is why you are doing it.” He is so right. I am doing this because Xavier has allowed me to be this strong, because he can no longer be. Get a grip, Isa.

Anyway, my suitcase is packed and I am doing prophylactic inhaled antibiotics/laxatives to make myself as well as possible for next week. I am so excited! I can’t believe I am going to go to the Games with Ana for the third time. When I get on that plane, I will be ready to enjoy the experience as yet another gift that my new lungs are offering to me. Life is good.

I wish you all a wonderful weekend. Thank you for reading my blog. I appreciate your understanding and patience, your tolerance of my confessions. Let me know if you can relate to any of it!

Best wishes for a safe, healthy, and wonderful July. We are in the heart of the best time of year. May you absorb the sun, breathe deeply the outdoor air, and give yourself a break from your hectic routine to laugh, relax and love your friends and family.

Take care, love, Isa

Ten Years June 27, 2008

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

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

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.