Ana and Isa’s blog

4/28/08

Dear Blog Readers:

It is midnight and we are in a beautiful clean hotel room, well worth the $20 extra we spent compared to last night.  Our LaQuinta Inn is a block from Virginia Beach, and the air is crisp and clean.  At 10PM, we reached the Atlantic Ocean!!!  Despite the light rain and darkness, I had to walk out to feel the sand and water.  Ana and I walked on the wet sand, arm and arm, so grateful to do this together.  At the sea, I took deep breaths and felt the humid strong wind blow against me.  I reflected on what a long and beautiful country the US of A is, and how much more I could appreciate the expansive land in my car.

Today was the 12th full day of our road trip.  We woke late and got out of the nasty Ramada Inn in Richmond.  It has been raining heavily for most of the day.  After a quick trip to the library for email, we drove nearly 120 miles to Norfolk.  As we exited a freeway to get onto the 64 east, the ramp lead upward and we drove towards a huge building.  One the top read, UNOS with a Donate Life.  Ana and I shrieked, “Ohhhh!” and then got tearful, because this is where it all happens.  This is the national headquarters of the United Network of Organ Sharing, where 98,000 people nationwide are listed for an organ transplant.  This is where recipients are matched with donors.  The magic, the miracles, the spiritual alignment all happens here.  This is where Ana’s name was listed twice, where mine was listed for 14 days, where Stacey, Pat, Tom, Lara, Tiffany (twice), Gloria, Lisa, Stewart, Patty, Paul, Andrea, Lorma, and all my dozens of dozens of friends whose lives were saved by organ donation were once listed!!!!  This institution makes life possible for all of us.  We had to call Cathy Olmo, our wonderful coordinator at California Transplant Donor Network RIGHT away.

We continued our rainy drive east and bickered about where, when and how long to stop.  I drove while Ana sat in the passenger seat, covered with maps, brochures and tour books.  We have a bad habit of telling each other what to do and have no boundaries.  We accuse each other of stupidity and boss each other around constantly to find things in the piles of junk in the back of our car.  At one point I tried to call Andrew while I was driving and Ana freaked out because it’s unsafe in the rain, but she grabbed my phone and threw it while I tried to keep it from her, and we swerved on the road.  I had already connected with Andrew and he heard it all.  There was a lot of yelling and swearing about how much more unsafe it was to be harassing each other like this while driving.  I put the phone on speaker phone and attached it to the velcro on my steering wheel, trying to have Andrew side with me.  “Oh, you two!” is all he said.  Then, just minutes after my phone call, Ana and I were singing together again to John Denver, and telling each other how much we love each other. And yes, we laughed aloud at our folly.

Finally, we stopped for a brief hour at historic Yorkstown.  This is the location of the last Revolutionary War battle between the British and the American troops who were aided by the French.  We learned about George Washington’s guidance to beat the British General Corwallis.  We touched historic cannons and collected water from the York River, which was once filled with French and British battleships.  We saw the vast meadows where the bloodshed occurred in early October, 1781.  We walked through the trenches dug at night in silence by strong men who had walked 450 miles from New Jersey in August 1781.  Don’t you think people were stronger back then?

We rushed from Yorkstown to Chesapeake to have a late lunch with a friend.  For those of you who have seen the news, I want to share that Ana and I are unaffected by the Suffolk tornado.  Chesapeake is next to Suffolk—aren’t we lucky? My heart goes out to the people who have lost their homes.  We cannot understand how these random events affect some yet leave others unscathed. 

While destruction was happening, we were chatting and eating with our friend Andrea Berninger, who went to high school with Andrew.  Andrea did the Boston Marathon one week ago and raised money for Team Boomer, for cystic fibrosis.  We met Andrea’s boyfriend and fellow runner and enjoyed warm conversation.  Andrea is my kind of woman: free spirited, independent, disciplined and health-conscious, compassion and service-oriented, and driven.  With Andrea, Ana and I fulfilled another goal for this trip: to enjoy a meal at Cracker Barrel.  I had chicken and biscuits with friend okra, fried apples and greens.  Andrew’s response, “Good Lord.  Take some Golytely.”  Ana had macaroni and cheese, fried okra and fried chicken.  This restaurant is one of my favorites.

Around 5:30 pm Ana and I rushed to the Children’s Hospital of the King’s Daughter in Norfolk.  This was the Cystic Fibrosis Education Day for CHKD and Portsmouth Naval Hospital.  We met the wonderful staff there, especially Connie and Patricia, and chatted with some amazing families.  Like our Chicago event, we felt bonded right away to these CF parents and spouses, even if we had never met before.  After Dr Cleary from PNH gave an update on research, Ana and I gave our talk.  The storm kept some families away but there were about 40 people in the audience.  We always try to give a hopeful talk while also being real about the challenges of CF.  I think we have a habit of saying kids are healthier now than in our day, so some of what we talk about most likely won’t affect these families.  To be honest, this is my way of protecting parents from thinking their kids will go through the pain and fears we went through and describe in our book.  But upon talking to some parents, there ARE plenty of kids with CF who still go into the hospital, who still have G-tubes and need IVs and are small and skinny.  Yes, there are others who are sports stars and adults who run marathons but CF even in 2008 is still a darn tough disease to live with for many.  For us, it is challenging to address an audience with such diverse experiences with CF.  It was also hard to talk about how much we benefited from knowing others with CF when at this event CF patients weren’t even allowed to attend.  The cross infection problem is devastating the support network that has allowed us to thrive with CF.

The hospital received a generous grant to provide books to each family and we signed them afterwards.  We were amazed to hear that many CF parents already read the book.  We were so grateful to attend this special event.  After the event, Ana and I drove in the rain to Virginia Beach, and found our hotel.

—

I am continuing my blog on Tuesday afternoon. I crashed at night in a deep sleep, better than an Ambien night.  I stumbled at night to go to the bathroom, forgetting where I was and what I was doing here.  Those are the best nights!  I woke up with Ana saying, “We’re going to miss breakfast!” and we rushed downstairs for a free meal nearly at 9am.  Then I came back to bed and slept until 1pm. I totally needed this!  Now I have procrastinated a jog to the beach and it’s time.  Ana went to the grocery store and we’ll finally use the crockpot that is taking up space in the back seat to make a meal to enjoy tomorrow on the road.  Once in a while we need home cooking.  They’re better for our gutsJ.

Tonight we are having dinner with a wonderful family we met yesterday at the CF education day.  We were going to go to the All-You-Can-Eat southern food at Golden Corral but I’m not sure my stomach can handle that.  It will be wonderful to connect to these new friends – another gift of having CF.

I hope you are all well and enjoying your week. I am thinking of so many of my friends who are struggling with health problems right now.  I don’t understand why we deserve these good days when others have yet to receive them.  You are with us in spirit across the miles.

Take care and wishing you all well,

Isa

 

4/27/08 (Posting on 4/28/08 at the Tuckahoe Library in Richmond, VA- finally, internet access!)

 

Dear friends,

I hope this entry finds you all rested after a nice weekend. 

 

Well, you’ll be pleased to know Ana and I survived our trip to Chicago.  On Friday night, we arrived at the beautiful Belden-Stratford Hotel in the Lincoln Park area of Chicago at 11:30PM after a horrendous drive through the rain.  We were determined not to eat fast food, and more importantly, desired deep dish pizza, so we ordered pizza to be delivered at 12:30AM.  We devoured the thick, saucy pizza quickly while going over our talk haphazardly.  In our exhaustion and distraction, I used Ana’s insulin pen by accident without changing her needle.  I exclaimed, “Ew! I hope I don’t catch your rejection.”  We had a good laugh, a sign of delerium.  With full stomachs, we fell asleep in our luxurious room at 1AM.  Thank goodness we are on acid blockers!  Needless to say, we passed out quickly.

 

Ana and I woke up early on Saturday, April 26 and packed quickly.  We picked up a few extra muffins and bagels from the fancy continental breakfast (for our future meals) and rushed to the CF Education Day at Children’s Memorial Hospital.  The wonderful staff including Stacey, Eileen and Joanne, among others, greeted us.  I also met my friends Cynthia and Steven, two generous souls who offer their wisdom to the CF community through USACFA.  Ana and I met the familiar faces of the sales reps from our CF drug companies.  We are all a big family by now!

 

Around 11am, Ana and I gave a one hour talk which was thankfully very well received.  We were extremely touched by the generosity of the Hagobian family, who donated books for every family who attended the event.  Mr. Hagobian’s daughter was in the hospital for CF a few years ago and was so moved by the struggles of other chronically ill children that she started to raise money to help these families.  Isn’t this an amazing young girl?  She exemplifies the blessings that come from illness- the stirring of a desire to have compassion for others.  The book funds came from their fundraising that is now called “Holiday Heroes.”

 

After our talk, family members approached us to have us sign these books.  It was very touching to witness a few family members become tearful and overwhelmed when talking to us.  Some said we said things they felt but could never articulate.  One 18 year old teen broke down and we could tell she was in the fragile state of hating CF and wishing she didn’t have it—that we were in half our lives ago.  We tried to reassure her that we were in the same place as she was, and that meltdowns were normal and natural because CF is hard!  We met young fragile moms of 2 year olds who carried the fear and worry that my mom did when we were that young.  Our hope was that these people can reach a place of self-awareness that we are blessed to arrive at after many trials with CF.  It was humbling to know we are all taking turns going through the emotions and trials that a common illness creates for our lives.  There really is nothing unique about our story, our book.  There are hundreds and thousands of others experiencing similar struggles which we just happened to write down.  We truly all are in this together!

 

After signing books and making people wait for over an hour in line, Ana and I went out to a wonderful meal with Cynthia and Steven.  I feel so grateful that our illness has allowed us to associate with such extraordinary people. I need not say anything but listen to these friends and I feel fulfilled.

 

Ana and I got onto the road by 3:30pm but got caught in a traffic jam, so we didn’t escape Chicago until 4:30pm.  Ana had another emergency low blood sugar, and fortunately, I was driving again.  Also, we have large amounts of food in the back of the car so she quickly recovered. Diabetes is high maintenance!

 

Then Ana and I had a sudden panic that we forgot our insulin in the hotel refrigerator, and then turned around on the freeway, only to realize we actually did have the meds in our cooler.  There was a lot of bickering: “You said you didn’t know if you picked it up!” “You put it in the cooler!” “I remember getting the ice blocks, or was that yesterday?” Ana and I share half a brain each!

 

Anyway, we drove from Chicago along the Lake, then on to Gary, Indiana.  We enjoyed the green flat farmlands of Indiana and missed stopping to meet our Indianapolis friends… We passed barns next to tall silos and brick homes with long driveways.  GMC trucks were parked in front and surrounded by half an acre of lawn.  We passed mostly American cars and felt self-conscious in our Honda.  We also passed cars with bumper stickers that read, “Abortion stops a beating heart.”  We are in the Heartland. 

 

I think it’s natural for those of us who’ve lived in one place for most of our lives to start feeling that our region has the ‘right culture and values’ that fit with us.  This is especially true in progressive California, and especially in the Bay Area, with so many socially-consciuous, educated intellectuals.  I started this trip with the mantra, “I will not judge, I will not be elitist” because of the different values and lifestyles we would encounter on our road trip.  When I see grossly obese people in large SUVs, I bite my tongue.  I then realize so many of these towns are so spread apart and the weather is not conducive to outdoor exercise, so no wonder people depend on cars/trucks and inactivity/obesity are inevitable.  I continue to try to respect and understand what I see.

 

We sped ahead through Indiana, watching the red sunset in the rearview mirror.  We stopped only for gas and bathroom breaks, and ate the box lunch we got at the CF event for dinner.  From Indiana, we crossed into Ohio in the dark and came to Cincinnati.  All I know about this city is WKRP!  We tried to take a smaller route instead of the out-of-the-way routes on the Interstate, but instead got tangled in the maze of downtown Cincinnati.  It was already 10PM, and we roamed the streets looking up at the lights of the impressive tall buildings of downtown and drove through the sketchy parts too.

 

We finally found the US 52 East and learned it was an Ohio Scenic Byway, which followed the Ohio River.  We couldn’t see much in the pitch dark, but noticed the tall smokestacks of factories along the river.  The 2-lane road curved and meandered along hills in the dark.  Using our GPS we finally found a hotel around 11:30pm.  We crossed the Ohio River and entered historic Maysville, Kentucky.  This was our 4^th state on Saturday!  When we walked into the lobby, a fog of smoke hit us and we knew we were in the south!  Maysville is a town of 9000 people and is well known as a historic tobacco trade city, a stop on the Underground Railroad, and the home of Rosemary Clooney, who appropriately sang “Sisters” in White Christmas.  Despite the smoke, I followed the sound of rowdy dancing and laughter into a lounge in the back of the lobby.  There was a sign that said, “Please join our Nascar Kick-off Dance Party.”  I have to confess I was tempted!  My two goals on this trip are to go to a southern church and to go country dancing.  However, the hoards of drunk people and hazy smoke-filled room, not to mention my exhaustion, kept me away.  Cigarette smoke used to turn me off, but now I cannot smell a thing.  Still, smoke repels me from my CF days.  Even on the road, I noticed nearly everyone smoking in public.  I thought about how unfair it was for me to judge smokers here when their entire history and economy is based on tobacco.  I can imagine the resistance the anti-smoking groups faced here.  Well, anyway, Ana and I found our room and crashed immediately.

 

This morning, Sunday, April 27, 2008, Ana and I roamed the streets of historic Maysville.  This is such a cute town with character, history, excellent signage, and culture.  We passed a store with Obama t-shirts in the window at 50% off.  People were extremely friendly (unlike Oklahoma except Stephanie Click).  I was tempted to attend church for the cultural experience but I hesitated because I was wearing exercise clothes.  But on one block, around 9:45am, a group of people gathered outside and as we passed they said hello, so we stopped to chat.  It turned out that the evangelical minister, John Earnhardt, cousin of Dale Earnhardt, was giving a seminar at 10AM.  One man was on oxygen and we sympathized with him, sharing our story about our lung transplants, and how grateful to God we were to be well enough to drive from California.  So, after some connecting, we decided to give it a try.  I confess some part of my interest was purely voyeuristic.  I wanted to see if the churches here in Kentucky and the South are what I expect from the stereotypes on TV and in the media.

 

Over the next hour, Pastor Earnhardt gave a beautiful sermon about God having a plan for all of us, and I actually agreed with a good part of what he said.  I wondered if he censored his talk because at one point he spoke of the “wickedness of humans” (which I don’t agree with) and said, “You girls are gonna go back to California and say I used the word ‘wicked’.”  We chatted a bit more with other people there, including the friendly Ben Wright, who introduced himself charmingly by saying, “I’ve been right all my life.”  We met an older lady who had two great-granddaughers with cystic fibrosis, proving that perhaps we were meant to go to this church and connect to these wonderful people.  Getting lost the night before, wandering on this block at the right time, were all coincidences that made us wonder if this meeting was meant to be.

 

Overall, I learned that I cannot judge people with the religious stereotypes of this region.  I knew it was a test of my tolerance to hear a sermon from an evangelist, when I passed billboards on the Interstate that said “Hell is real” and “It’s your choice: Heaven or Hell.”  That threatening religion turns me off, but when hearing someone like John Earnhardt, I think I learned to appreciate those who are faithful because they 1) want to understand the meaning of their lives and 2) want to live the best life they can.  I hope that the people at that church also could reflect on their stereotypes of Asian San Franciscan women.

 

We got on the 52 East road and continued along the beautiful Ohio River Byway for a few more hours.  We drove by broken down wooden shacks with faded words like, ‘New Tobacco Company.’  I saw a sign that said, “Global warming is good for boatin’ business.’  In New Boston, Ohio, we stopped at the grocery store to look for postcards and buy fruit and carrots, because we are desperate for fresh produce.  We saw some Ohio River Valley wine and added that to our basket.  At the register, the clerk said with a southern twang, “I can’t sell you this.”  I was ready to pull out my ID, but she said she could’nt sell wine on Sundays.  Beer is fine, though, and we wondered who thought of that double standard!  Through Portsmouth, Ohio and other towns, we saw an unusual number of hospices and funeral homes.  We also saw two billboards stacked; the first one said ‘Cigs for Less: Discounted Cigarettes next right’ and the second one said, ‘Cardiac Care Health Center: Next Right’.  We had to laugh at this irony. 

 

At the end of 52 East, we re-entered Ashland, Kentucky to take a photo of the “Welcome to Kentucky” sign that we missed the night before.  Then we entered Huntington, West Virginia!  Immediately, we saw Obama signs for the upcoming primary on May 15.  We saw hybrid and foreign cars again and felt a bit reassured we were in more progressive country.  Of course, we blasted John Denver’s “Take Me Home, Country Road” and sang outloud, giggling at ourselves.  Near Charleston, we took a long route on the 60 East, or the Midland Trail, that passed miles of historic coal mining towns.  We passed historic graveyards- if only each tombstone could talk!  We made tuna sandwiches in the car and munched on snacks.  We passed piles several stories high of black rock and signs that read, “Coal Keeps the Lights On.”  We passed Booker T Washington’s home in Malden and his famous African Zion Church.  We read in the brochures that the Kanawha River has salt reserves that lead to Pawnee Indians and eventually whites to settle along the river.  These people created the towns long before black goal was discovered.  Our car was stopped at a light when a train passed, with nearly 50 cars filled with coal.  I felt honored to witness this region’s history and economy based on coal.

 

The river was nestled between tree-covered hillsides and the scenery was gorgeous.  We passed the Dupont factory and other chemical factories in Alloy, West Virginia, where silicon is processed for Silicon Valley chips.  I winced as I saw the smoke stacks and thought of the toxins in the water and air that may impose health risks for the locals.  We made our way towards the London Locks and Dam, two waterfalls, the Gauley Bridge and eventually came to the New River.  We stopped to shop at the Country Corner Store which was a delightful quaint tourist trap.  As we reached the famous New River Gorge National River, it started to rain, so we did not have time to appreciate the beautiful staircase down to the bottom of the Gorge.  We witnessed the highest bridge in the Western Hemisphere and the 2^nd highest bridge in the world. 

 

Eventually, we got out at Hawk’s Nest State Park and stopped for a 15 minute jog (Ana’s walking!).  I am dying to exercise but we HAVE to keep moving east!  Around 6pm, we stopped at Tamarack, “The Best of West Virginia,” where we shopped for beautiful arts and crafts.  We picked up sandwiches for the road.  I told Andrew on the phone that I was eating a fried green tomato and bacon sandwich. He said, “Well, it was nice knowing you. I guess I’ll keep the car and house.”  Well, it was scrumptuous!

 

By 8:30PM on Sunday night we finally reached the Interstate 64 and drove through the dark Allegheny Mountains, listening to Blue Trial of Sorrow, my favorite bluegrass album.  We finally reached the Virginia border and have driven 4200 miles already from California.  It has been raining horrendously again for several hours.  For some reason, Ana is always driving during the worst weather.  Over the Blue Ridge Parkway, there was extremely dense fog and the visibility was less than 30 feet.  Ana was grasping the steering wheel and leaning forward, driving 30 mph.  Of course, there was cursing.

 

Despite the evening rain, the drive through West Virginia was absolutely breathtaking.  The trees have light green early leaves and the dogwood trees are in full bloom with pink and white blossums. The redbud trees are also ablaze with purple blossoms and we gasp every time we pass a hillside speckled with brilliant spring colors.  I decided that West Virginia is my 3^rd favorite state after California, coming next to Alaska and New Mexico.  Our entire day lasted longer than expected and we had to cancel our hotel reservation in Norfolk.  There was too much to see in 500 miles.  So, we drove for 12 hours and it is now midnight and I am finishing this blog in a skanky Ramada Inn in Richmond.  Tomorrow we will drive another 250 miles to go to Norfolk.

 

Ana and I have been driving for 12 hour days for 4 days.  I am starting to feel like I do when I’m stuck in a hospital room- major muscle atrophy.  We are low-budget and have spent $20 a day on food; yesterday we spent only $11.  I feel a bit skinnier so it’s time to eat more.  But the piles of snacks in our car must be consumed.  It’s also time to be more diligent about my enzymes. I am terrified about being blocked up so I’ve let myself malabsorb a bit.  With our eating and sleeping habits on the road, and our endless passion for seeing everything, we realize this traveling style would drive our men absolutely crazy.  Ana and I are tired but holding up wonderfully.  How lucky we are to feel so healthy!  Back home on Saturday, we missed the California Transplant Donor Ceremony.  Ana and I were thinking of her donor family and honoring his memory. Because of Ana’s first and second donor, we are able to fulfill this fantastic adventure together.

 

Thanks for your patience to read these long entries.  This is more for our memory than your interest.

 

I wish you all a beautiful week ahead. Please take care, with love, Isa

  ——–

4/25/08

Dear friends,

Thanks for continuing to be a voyeur on our blog and our road trip.  It is 7:20PM and we are 200 miles from Chicago, on the Interstate 55, very close to Peoria (hello Dottie et al!).  Last night, I had a much-needed long sleep.  Ana and I met a nice man in the Days Inn breakfast room who was peddly beauty products so we got a bit delayed.  Ana and I finally got on the road around 9:30AM to rush from Emporia, KS to Columbia, MO (about 250 miles).  As Japanese women, we felt terribly guilty for visiting our friends at the University of Missouri Press empty handed.  So, Ana worked like a machine to create seven “65 Roses Hope Necklaces” for everyone at the Press who worked on our book. She finished the last one just 10 minutes before we pulled into the driveway of UMP.

 

We were greeted enthusiastically by the wonderful ladies and gentlemen of this small academic press in the heart of Missouri’s university town, Columbia.  The walls were adorned with posters of their books, and tables were covered with specialty books on Missouri history and culture.  By the receptionist’s desk, we saw our book displayed with two dozen from this past season’s catalogs, including one about Laura Ingalls Wilder.  We met sweet Sara, who worked for hours and hours copy-editing our book last year to make it what it is today.  We embraced Beth, who also spent hours publicizing our book in such an excellent manner.  We briefly greeted Bev and Gary, the wonderful editor-in-chief and acquisitions editor, respectively, who accepted our manuscript way back in October, 2006.  We happily put faces to names of people who each had vital roles in the success of our book: Karen, Kim, Debbie and Linda. 

 

Ana and I joined some of the ladies for a delicious lunch at Sophia’s.  We chatted about all the opportunities this book has opened up for us, and what a delight the Press has been to work with.  We learned alittle about each person, and admired that Linda and Karen had been at the Press for 30 out of its 50 year history! Now, that’s dedication!  We also took a quick tour of the University campus and admired how young the ‘kids’ looked.  We also toured the Costco-sized warehouse and saw rows and rows of boxes of books, up to 3 stories high.  It was humbling to know how dedicated the UMP staff has been for our book, just one of thousands in their history.  We left the Press with gratitude that these individuals felt that our little family story was important enough to them to take on the task to publish the book for the world.

 

Our lunch lasted longer than expected and we finally got on the road by 4pm for a 6 hour drive to Chicago.  We continue to appreciate the different culture of this region as we listened to Christian rock on the radio.  I saw a billboard earlier that said, “Righteousness makes a nation great but sin is a cancer to all people.”  Another one read, “Accept Jesus Christ as your savior or regret it forever.”  Although I respect people of deep faith, when religion is such an entrenched part of the culture, I often wonder how affective it is for the spirit when one is bonked over the head with it over and over again.  In my personal opinion, these threatening billboards do nothing except make me wonder how many people go to church because of social pressure rather than a genuine, sincere desire to explore one’s faith. 

 

So far, I’ve been keeping track of the grestest markers of America’s corporate domination.  In 2300 miles, when I’ve paid attention, I’ve seen about 45 McDonalds along the interstates, 17 Walmarts, and 20 Walmart trucks.  We passed other cultural icons of American consumerism: the factory for “Lee” jeans (I doubt they’re still made here) and even Dolly Madison Cakes.  We are so excited to see Cracker Barrel and strive to enjoy a meal there during this trip.  Ana wants to try Long John Silver’s and Dairy Queen in the Heartland.

 

The sky is dark with a serious Midwest thunderstorm.  We just passed Springfield and were impressed with a massive rainstorm and lightening shocking us into intense focus on the road.  The flat prairie lands would suddenly light up with crooked flashes of lightening across the sky.  We have never driven in such horrendous rain.  Thanks, Tom G., for the warning!  We shriek everytime lightening comes close to us, followed by giggling.  Now, I know we brought umbrellas but in the piles of scattered junk in the car, we have no idea where they are!

 

Our bicker meter today is low. But Ana just accused me of not driving enough.  As twins, we have to be fair!  Our bickering increases when we can’t find stuff we need, which is most of the time. 

 

Okay, I will sign off for now. It is getting dark and we can hardly see the road.  Each time a truck passes, we can’t see a thing with a cloud of spray in front of us. In the stuffy confines of our Honda Civic, uncontrollable four letter words ring out. We think of pulling over but are encouraged by the words of our GPS, “Remain on the current road.” During the downpour Ana is hunched over the steering wheel, eyes stinging and hands clenched, armpits moist with tension.  I will help Ana see in the dark… four eyes are better than two.  Woops, we just hydroplaned.  Ana needs a massage tonight!!

 

Thanks for your concern. I hope you all drive safely. 

 

Love, Isa

By the way, God Bless California.

 

….  It is now 10:43 pm and the lights of the Sears Tower are visible in the distance as we continue our pursuit toward Chicago. We are so determined, we haven’t even had dinner yet. The rain continues and it is close to 50 degrees outside. We have almost completed the hardest two days of our road trip – 1,400 miles of driving in two days- but we did it; like always, we feel that we can do anything, as long as we have each other.

4/24/08

Dear friends,

Thank you for your ongoing interest in our book tour road trip! It is almost 9am Mountain Time and we’ve been on the 40 Interstate since 6:20 AM! We are listening to Christian and Country radio and PSAs about alcohol abuse and abstinence.  We just passed a billboard for a motel that was $19.95 a night…

 

Ana and I left Albuquerque after a quick 48 hours in this beautiful New Mexico.  I don’t know if we are just high on life, because we love to see different parts of our country, but something feels different here. The sun is brighter, the air is clearer and people are extraordinarily friendly.  We are fully alive.  I sometimes don’t know if I’m dreaming, because I visited Santa Fe last August and wished more than anything to return here with Ana when she recovered from her 2^nd lung transplant.  And so we set a goal, we aimed for it, and we made it happen!  This act feels like such a privilege… this is a want fulfilled, without any health, time or financial barriers.

 

We spent two nights in Santa Fe’s historic El Rey Inn thanks to the generosity of our friend and host, Olin.  Our room was huge and adorned with fancy New Mexican décor. This was not the type of hotel where we needed to use our can of Lysol, which has come in handy for our caliber of hotel!  On Tuesday, we spent the day together, starting the morning with a fantastic New Mexican breakfast at the famous Tecolote Café (featured on the Food Network’s “Diners, Drive-ins and Dives”—our guide to good food across the country! I decided I really do like red and green chile- though I favor the latter. Before, I didn’t think there was a difference between New Mexican and Mexican food, but now I appreciate the special chile flavor of NM food!

 

After our meal, we visited an Indian Museum on Santa Fe’s museum hill.  We saw some amazing arts and crafts from centuries ago, and read about the history and culture of the Hopi, Zuni, Navajo and Pueblo people.  This was a positive museum about the resilience and cultural pride of these survivors.  After a taste of culture, we went for a short walk through the hills of the Santa Fe National Forest/Sangre De Cristo mountains just outside of Santa Fe.  The drive was gorgeous, as the sky was bright blue and the day was warmer than normal.  The dry shrub-covered brown and red hills were speckled with homes in the unique tan-colored, adobe-style New Mexican architecture.  I could stare at the landscape forever.  It was such a joy to walk through this land at nearly 8000 feet and not suffer from the altitude. We talked with our special friend for hours and hours.  Among other things, we talked about Olin’s writing about his experience as a father of a child with CF.  It is wonderful to have this shared experience. 

 

After our walk, we went to downtown Santa Fe’s Plaza. We browsed some touristy shops, and enjoyed the gorgeous plaza surroundings.  Then we went to another delicious New Mexican dinner and ate extremely large portions! Ana and I said goodbye to Olin early, saddened by the quick passing of the day.  We had a lot of emails to catch up on, as well as do other chores like wash laundry and nebulizers.  We figured the high desert air was perfect to dry our laundry outside overnight.  Two days before, I hung my washed socks and underwear out the window when we drove by the Grand Canyon. When the crowds appeared I took down my underwear but left the socks.  When we drove back on the highway, I suddenly realized the socks were gone! Either someone wanted a pair of used socks or they flew off the car with the speed. Darn! Those were great socks!

 

Random Tangent: It’s 10:25AM now because we just entered Texas- and it’s Central Time!  I was trying to avoid Texas but the I-40 lead me here.  I am officially in BFT…

 

Yesterday, Wednesday, we woke early to pack the car, and had a light breakfast in our spacious room with Olin.  We then ran some errands, including buying 5 jars of green chile at the local supermarket. We drove down to Albuquerque together.  I sat in the car with Olin and talked and talked about everything. Close friends are the best! We then ran a few errands and head to the University of New Mexico Hospital, where Ana and I agreed to stand at the cafeteria hallway with the Donate Life booth (April is organ donation awareness month). We met Maria Sanders, the community outreach director, of New Mexico Donor Services, who has passionately fought and supported organ and tissue donation in New Mexico for 17 years.  She has quite the challenge that is different from our California Transplant Donor Network- the population here is extremely spread out, less educated, and faces cultural challenges in attitudes towards organ donation among the Native Americans and 40% Latino population.  After chatting to hospital staff who passed our booth for an hour, Olin, Ana and I headed to the Indian Cultural Center.  There, we didn’t go to the museum, but went to the courtyard to meet Olin’s friend, Michelle T. Cisneros, a popular Pueblo/Navajo artist.  For Christmas Olin sent Ana and I each one of Michelle’s prints of “Sisters”, an image of two gray-haired Indian women.  We strive to be as grey and old as those women some day!

 

After grabbing a quick but delicious meal of Indian tacos and nave rellenos at the cultural center, we saw some beautiful Indian dancing in the courtyard.  Then we joined Michelle and her husband Murphy at their booth for some precious one-on-one connection.  We sat for a little more than an hour, sharing stories of our lives and hearing about her evolution as an artist, mother and Indian woman.  This was one of my most special moments in my life; relating deeply to a stranger just because we were face to face, and open to hearing and talking about our lives.  Having Olin there sitting with Michelle and her husband made it seem like this was just an old reunion of friends and we had somehow known each other before. Michelle and Murphy kindly invited us to visit their Santa Clara Pueblo and go fishing in the future, which we took to be a great honor.  We gave them our book and they gave us some art, and we parted, deeply touched forever.

 

Ana and I head out to our friend Ed K.’s aunt’s home in Albuquerque where we were planning to spend the night.  Ruth was 85 years old and was as sharp and energetic as a 35 year old!  She lives in a spotless and spacious beautiful New Mexican home which welcomed us openly.  Meeting her and connecting is another joy of our road trip.  Ruth was an extension of the love we have for Ed and we had never even met! We took her to a modest New Mexican restaurant (never tire of green chile!) and listened to her stories of old life in Tokay, New Mexico, a now-defunct mining town.  We wene inspired by her service to her church, Meals on Wheels and her very active social life!  This woman’s involvement in giving back and cherishing life was truly inspirational. What a joy it is to meet this special lady.

 

After dinner, Ana and I went to Page One Bookstore for our signing, which was an extreme success.  We only knew a few people in Albuquerque but advertised like crazy.  When I walked into the booksigning space a few people were gathered and I noticed them turn their heads and look brightly toward us, as if they knew us.  The event was a beautiful collaboration of our two causes, cystic fibrosis and organ donation. Maria Sanders was there to support us, as a portion of the sales went to NM Donor Services.  A few others from NMDS came as well, including one lung recipient and one kidney donor and her family. By 7pm there were close to 30 people there.  A huge group from the CF Center, including Dr. Cousar-Taylor, Patricia, Bill and others came to support me after I spoke at their CF Education Day last August.  They just had CF clinic that day and I appreciated them coming after a long day!  People from the NM newborn screening and a genetic counselor attended.  Tracy, Amanda and others came from the NM CF Foundation, including a 12 year old named Jaleh and her sister Siri. Jaleh has a 7 year old cousin from California with CF, and after her recent visit to see him, she was moved to do something for CF.  Her mom and aunt gathered donated fabric and sewed a GORGEOUS blue and yellow quilt and Jaleh is selling raffle tickets to raise money for CFF!  After Ana and I spoke and read, Jaleh gave a speech and so did Maria from NMDS and Amanda from CFF.  Jaleh sold raffle tickets.  We answered a few questions and then signed books.  We write a lot on each book and enjoy to chat with each person.  We met some CF families and a young mom with CF who is preparing for a lung transplant in Denver.  These families affirmed that our story is not unique and life repeats in the trials and tribulations we endure with cystic fibrosis and transplantation.  Unfortunately, our chatting with each visitor made people wait in line for a while. The best feeling for me while signing books was to overhear conversations among CF parents lined up, chatting about their kids’ medications and coping.  They were relating to each other, sharing their stories, and CONNECTING.  Though they might have known each other before, I felt grateful that our book and booksigning allows people to BUILD COMMUNITY.  We want people all over the country to have the loving supportive CF community that we’ve been blessed with in the Bay Area.

 

We left our signing around 9:30PM, sadly saying goodbye to Olin and our new friends. We sold 17 books since many people already had their own copies! We left with our hearts overflowing with love and connection to all these new people. This event was a total act of grace. 

 

Our goal is to reach Tulsa, OK or Springfield MO tonight, around 700-900 miles. That is very ambitious! We are taking turns driving and being very careful.  We are both admittedly exhausted.  We were high with excitement last night and had a hard time sleeping.

 

We miss our doggy Rupie, and havea flip video camera with a short film of her. Ana and I are cooing and gooing and giggling as we watch her on video over and over.  We are taking shots of the scenery we see on this road trip as a great memory of this adventure.

 

— Blog entry, 4/24/08 continued—

It is 10PM and we have checked into Day’s Inn in Emporia, Kansas City! We drove nearly 700 miles or 13 hours today!  Believe it or not, the time passed quickly.  We tried to nap but I was too uncomfortable.  We listened to “The Tower of Power” album including songs like “Ain’t Nothing Going Stop Us Right Now” and “Gotta Have Some Fun” (thanks Nahara!).  We live in the illusion that we are invinsible on this roadtrip, knowing that is not true but basking in this freedom nontheless.  As we passed the flatlands of America’s Heartland, we also sang along to John Cougar Mellencamp’s “Jack and Diane” and “Pink House,” which made us feel truly American!

 

Ana and I covered 4 states- NM, Texas, Oklahoma and now Kansas.  By 9pm, it was so dark, we just couldn’t make it to Missouri, which is only 100 miles away.  We had a brief stop at a tourist trap in Oklahoma, the Cherokee “Trading Post” where I bought overpriced postcards.  Then we stopped for 30 minutes at the moving Oklahoma City National Memorial commemorating the bombing on April 19, 1995.  The ranger, Stephanie Click, was absolutely phenomenal and gave a brief but touching tribute/tour.  We passed roling green hills and flat, flat ranch land.  My imagination soared as I imagined what my life would be like if I lived out there in the middle of nowhere.  As long as there was a library, I’d be okay, but it seemed like there was nothing in the remotest parts along I-40.  We drove for miles along the historic Route 66 and took a brief sidetrip to pass through historic downtown of El Reno.

 

The scenery was fabulous.  Sparrows flew haphazardly in front of our windshields, and schools of finches swooped up and down in unison as a group, darting downward and upward over fields of cows.  We witnessed a magnificent red sunset over Kansas- there is no comparison for the sun setting over the plains.  Our only annoyance was that there was absolutely no civilizations for miles on end; and every 20 miles or so there’d be a gas station and McDonalds. Those of you who know me know I am a food snob because of my job in obesity prevention so I refused to eat at McDonald’s.  By 9pm we finally found a town, Emporia, and at a nice meal at the famous Village Inn. We are exhausted and ready to sleep here at Day’s Inn.

 

I haven’t moved my legs all day and my lungs feel shriveled up. I used my time in the passenger seat to practice my bagpipe chanter (like a recorder) and strengthen my muscles using my old rubber therabands.  Twice Ana and I ripped them because we pulled too hard! We now bid you good night and we are so grateful to have made it this far safely. 

 

Thank you for your ongoing interest in our trip. We wish you all health and safety and adventures of your own at home. We are thinking of you and thank you for your support.

 

Take care, Isa 

4/21/08

 

We are 1000 miles into our cross country road trip, on Interstate 40 just a few miles shy of the Historical Route 66. A recent road sign stated, “Wilmingtonn, North Carolina, 2554 miles ahead.” Our Honda Civic Hybrid is adorned with a decal (courtesy of Isa’s husband who is better at tooting our horn than we are) that reads “ Power of Two Book Tour 2008” as we crossed California state lines last night into Arizona. We are currently 100 miles east of the Grand Canyon, and 250 miles west of the Continental Divide. Music has been blarring, including the Dixie Chicks, “ready to run, ready to have some fun” and Bob Flanagan’s CF camp songs, with lyrics perfect for the occasion “have you ever seen the spring in the Great Divide?” The images before us include saguaro cacti, tumbleweed, mesquite trees, high desert mesas, endless blue skies and bright sunlight and strong winds and jagged rock formations. On the road, we see many WalMart semi’s and RV’s and the endless highway that is so quintessential American.

 

Our first stop of our book tour was Southern California, where we spoke to a packed room of medical professionals from Children’s Hospital Los Angeles’ Family Centered Care program. We were able to spend time with myparents and my cousin Julia who live in LA. As we departed my parents wished us off with gifts of rice balls (onigiri), seaweed and toilet paper for the road. My dear neighbors whom we grew up with wished us off with a Starbucks gift card and a prayer “Godspeed” as we took of on our 8000 miles road trip. 

 

That afternoon we had a book signing at Earthsong books in San Diego. On our way there, our odometer passed 77777 miles, which we take as a good omen! Our event in Del Mar was another sold out signing with over 25 attendees, :including medical professionals from UCSD CF Center, and CF families and friends, and Andrew’s San Diego colleagues. We were inspired to meet a woman who was 16 years post-transplant for CF. Gee, I better plan for a future!  At 7:15 am the next morning we were interviewed on live news by San Diegos’ KUSI channel 51. It was a four minute interview arranged by our publicist to increase awareness of CF and organ donation. Later in the day we spoke at a support group for the One Breath Foundation, located in Norwalk (part of Los Angeles). We met over 7 people waiting for transplant including a 69 year old man. I wish him well as he endures this surgery at his age. Godspeed.  It was bittersweet, as the support group was mourning the loss of one of their attendees- a 28 year old man was called for his transplant earlier this month (after waiting 1 year) and had a heart lung transplant at Stanford, only to die 12 hours later It shocked all of us. His parents attended the group even if his memorial service was only last week. We spoke cautiously, well aware how ridiculous it was for us to share our story about the success of transplant in a grieving environment where the real risks stared in our faces. We can only find comfort knowing that he went into surgery full of hope and died that way. What determines who lives and who dies, who does well and who suffers? I can’t help but feel guilty as we frollick carefree on this trip while others suffer. We pray for them and hope someday this will all make sense. Clearly someone else is in charge.

 

We crossed state lines around 6:00 pm and stayed in a simple motel for less than $50. As soon as we entered Arizona, gas prices dropped to $3.33 per gallon and we had a great dinner for less than $12. For Californians reading this, we are getting ripped off!

 

We are heading towards Albuquerque for our next booksigning. We decided to take a 120 mile detour to see the Grand Canyon. This is my first day off crutches in four months. My foot hurts walking but it feels great to be liberated. What a day to go to the Grand Canyon, huh? I will have to restrain myself from this mouth watering experience.

 

The car is filled with snacks, insulin, water and communication technology. Sounds of laughter and singing ring out, although there are occasions where the nag factor escalates to “medium high.” So far we are happy to report  the GI status is GOOD.

I am at 6000 feet and breathing fine. Considering where I was a year ago, I am on occasion consumed by emotion. I’m sure many of you following our blog may be tired by our ad nauseum attitude of gratitude and PollyAnna-like effusive joy and awe and constant reflections. But truly after experiencing such suffocation and inability to do anything last year, I really, really can’t help it so excuse me.

 Thank you for your interest in our blog and travel journals. We hope you are cherishing these Spring moments as well.

Love Ana (and Isa)

 PS When I finally put this online, we are safely in a luxurious hotel in Santa Fe at 11pm! Thank goodness our drive went smoothly. Our day became longer than anticipated with impulsive detours to the Grand Canyon and another stop at Petrified Forest national park in Arizona. More to follow…. good night!

Dear Faithful Readers,

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

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

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

Love, Ana and Isa