Ana and Isa’s blog

5/18/08

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 ANA

5/4/08

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ana

Dear Faithful Readers,

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

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

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

Love, Ana and Isa

Dear Friends,
There is no way to initiate a partner into the life of CF and instantly become closer than to experience a bowel obstruction in front of them. These words I wished I didn’t have to say in the middle of the night: “Honey, I have to go home to get Golytely.” Once home and a few hours later, more hesitant words followed, “Honey I have to go to the ER.” Someone once said bowel obstructions are more painful than childbirth, and although I don’t know the latter, I agree. It’s amazing how such a personal and taboo act of going #2 can become the focus of the day when things don’t go well. I spare no shame. Because of the intensity of pain, I relinquished all modesty and invited the gurus who make a living unclogging the plumbing of the intestinally challenged. I even surrendered to morphine to provide relief (ahh……).

I arrived at the ER at 6:00 AM after a sleepless night attempting to chug 4 liters of Golytely laxative solution at home to no avail. This was the first time that Golytely did NOTHING so I new this was BAD and feared a rupture.
Being the loving and dedicated partner that he is, Trent accompanied me. I was speechless except for grunts and heavy breathing due to pain, but he still sat by me for much of the day, being both my solace and my advocate. Service was quick and the staff were kind. It seems like saying the words “transplant patient” upon admission seems to expedite things. However, there is the usual need to explain CF and the implications of being an immunosuppressed transplant patient. Below are some real quotes from nurses today, that I find humorous and typical of the chaos of the medical system when there are too many patients and too many diagnoses to keep track of.
” This is Anabel , she had lung cancer.” (What???!!!)
“Did you have a bowel transplant?” (I wish!)
“Are you pregnant? You look about 4 months.” (I FELT pregnant!)
“We really don’t want you to bring your own meds to the hospital. We may have to store them with our pharmacist.” (I didn’t bother explaining that I bring my own meds because by the time they got the orders for all my meds straight, I would be discharged.)
After 2 gallons of Golytley and 2.5 liters of contrast enema (sorry, to much info), I felt like my gut was going to explode. It was distended beyond recognition and my belly was painful to the touch. I was tempted to just do harikiri on myself and purge my gut that way. Thankfully, after much ado from which I will spare you further details, I am cleansed and feeling human again.
Being in the ER for six hours and witnessing a car accident, stroke and heart attack victim, and a woman having a psychotic episode, it put my discomfort in perspective. I was moved out of the ER and placed elsewhere for observation. I was told that one of the criteria to go home was to eat a “soft foods” meal and tolerate it well. When my tray arrived, I was surprised to see steak on the plate. So much for “soft” gentle foods for traumatized guts!
I finally was discharged at 9 PM, thankful I didn’t have to spend the night. I prayed to God for understanding for missing Church on Easter and laughed at my analogies between Easter and a bowel blockage: the Baptism of my gut, the wish to “lay an egg”, the rebirth of my cleansed gut.

I hope you had a wonderful Easter!

Wishing you many healthy bowel movements.
ANA

Dear Friends,
Happy Spring! Happy Good Friday! My friend Pat has pressured me to write more on this blog so I am obliged. Thank you to everyone who, like Pat, lurks to see what’s next in our lives.

Fortunately, there is nothing dramatic to report. We are in a routine at home. The house is a mess and laundry baskets are full. The yard needs tending. But I have my priorities: health and the book. I have been swimming every other day, and running every other day. On Tuesday I went to the track and sprinted four 100m, and on Wed and Thur I was so sore I could hardly get up from a chair. I can’t believe how easily the solumedrol tears away muscle! So I am on a mission to build up again. I feel so unmotivated, in part because I have been busy with book stuff, but it has been a sunny but unusually chilly week, and jumping into a pool has been dreadful. Then I have to remember how disciplined I used to be with my CF, when I didn’t have a choice… I just did my treatments, so the least I can do is swim for one hour a day now. It’s easy to beat myself up when I don’t exercise, saying I’m lazy or undisciplined, but then I remember once in a while the body needs to rest. It’s okay.

So Ana and I have been preparing for our various book events on our road trip. We secured one more bookstore signing in Albuquerque on April 23, so now we have book signings in San Jose next week, then San Diego, Albuquerque, Baltimore and the Triangle area of North Carolina. We then have CF events in Orange County, Chicago, Norfolk, Charlotte and Omaha. If anyone has friends or family in those areas, please let them know about these events. We are taking a risk because we don’t know that many people in those locations, so if we get 10-15 people we’ll be happy. Please help spread the word. Thanks to those who already have! The details of the signings are on www.stenzeltwins.com.

I just pray we’ll be healthy for these events! It is scary to plan so many commitments as if everything will be okay. We just have to hope for the best. Before October 2006, I would’ve had no doubts that we could fulfill our goals. But Ana’s rejection and my recent RSV hospital stays have jolted my security. I see my friends with CF and transplanted held hostage by their pains and problems, tethered to the hospital, and I recognize any day now that could be me. What are we doing planning on driving 3000 miles away, sometimes to the middle of nowhere? But I have to keep living. I have to keep making plans as if everything will be fine. That’s what most people do- don’t we have the luxury of doing that too? Is that asking for too much?

So, we move onward. Ana and I have basically spent 6-8 hours in front of the computer all week looking for addresses of groups/organizations and individuals who might be interested in attending our book signings. We try to recruit the local CF Center staff, the CFF staff, the organ donation groups, and then we stretch it and reach out to repiratory therapy departments, mothers of multiple groups, Japanese groups, CF research staff, transplant centers, etc., of each location. We send postcards and flyers out, but mostly we create the God-forsaken spam that people dread, announcing our signings. I apologize in advance to those of you who are feeling bombarded by our marketing efforts. It will all be done in two months! Then, life will go back to routine. I find it painful to promote myself as if this is the most important thing in people’s lives; which I recognize it is not! It is for me, right now, and I figure, all we can do is let people know what is going and they have the option to participate or not. I am deeply touched when people go out of their way to attend book signings and write to us.

Some of you may know I have a complex about not working, and how I don’t have a real career like Ana has had for the last ten. But today it hit me that I am working on this book, I am just not getting paid for it! The definition of work in physics is the expenditure of energy, and I am certainly doing that. Just not getting a paycheck makes this work more flexible and relaxed. This immense book effort reminds me that I have a tendency to be obsessive-compulsive, and I was that way with my paid jobs, which sometimes got me into health trouble because I couldn’t say no. Now I confess it feels good to be this much of a diligent workaholic for myself and my own project. This is the one thing I’ll promote like crazy for myself, right now. It won’t last forever, but it’s okay for now. Now, for the record, I am not putting in this effort for any real outcome. I certainly don’t care for fame or fortune. I don’t really care how many books we sell or what the tiny royalties are. I just want to do my best in this effort, and see that we’ve done everything we could to promote the book. And when it’s over, there’ll be no regrets. I guess that’s my attitude towards life generally.

Today I went to get my blood drawn at Stanford Hospital, and was glad to do so. The large cherry blossom trees by the entrance are all in full bloom, and I feel like I am walking through Heaven when I enter the hospital. The walkways are covered with blooming daffodils and other colorful bulbs, scattered with forget-me-nots all over. How lucky we are to receive care from such a healing environment! This reminds me of going to Stanford Hospital regularly right after my transplant in March, 2004, and watching these cherry blossoms at a time when I was newly resurrected. Nothing changes. I stil feel awe, amazement, joy, gratitude for being alive to see another spring. Most of all, I feel wonder at how amazing the cycle of life is– for nature, and for us.

I do hope this weekend brings a special kind of resurrection to your personal life.

Happy Easter to you all.
May you all celebrate health as well.
Isa

3/9/08

NIGHT DRIVING IN THE MIDDLE OF NOWHERE

We arrived in the near darkness to Tulelake (AKA middle of nowhere), a town about 15 miles south of Klamath Falls, nestled in the Klamath Basin north of Mount Shasta and about 12 miles from the Oregon-California border. We chose to stay here because it was closest to our next dream destination- Lava Beds National Monument- and also because of the historic significance of this small town, which is home to about 1000 residents today. Tulelake was the sight of the largest Japanese Internment camp during World War II, imprisoning over 29,000 Japanese Americans (mostly American citizens) from approximately 1943-1946. We wanted to pay tribute to the price the Japanese Americans paid during World War II, a sacrifice that some believe has spared Muslim Americans today from the same prejudice and unfair treatment.

We stopped at the only motel in town, a small building built in the 70’s with very modest accommodations. It was not the ideal place to stay but we had no choice. There was no hot water in the sink (the bathroom towels boasted a presence from the 70’s as well), the front door’s only lock was the one on the door knob, and it was right next to the highway. A last resort but also “a never-again.” There were no immenities, not even a box of Kleenex. We then proceeded into town to search for dinner, only to find a deserted Main street with buildings that dated back to the 40’s . After much driving, we found a saloon and entered, only to find they didn’t serve food. The owner recommended a restaurant five miles south and we were delighted to find a family diner serving delicious dinners till 8 pm on a Saturday night.

Driving home, the highway was dark and I was driving, struggling to push my boot cast (from my broken right foot) into the gas pedal. Isa was inhaling her tobramycin antibiotic nebulizer in the car using our portable machine. I drove cautiously, partly because of the darkness and unfamiliar territory, but also because I was engrossed in the music of Brandi Carlile:
Have you ever wandered walking through the woods, and everything feels just like it should, part of a lifetime, part of something good, have you ever been walking through the woods?

Suddenly, red and blue lights were flashing behind me. Damn! A cop! I pulled over to the shoulder, creating a dust cloud that kept us from opening our windows well until the cop was standing outside the passager’s side door with a flashlight beaming at us.
“Were we going too fast?” Isa asked when she finally had courage to open her window. Isa reflected her usual uber cheerful and overly friendly self. The cop proceeded to tell me I was driving 40 mph in a 65 mph zone. Too slow. Now that’s a change for a Californian driver. We explained that it was dark and we were not from here, although I think that was obvious. He asked us how much we had been drinking. Anyone who knows us recognizes that Isa and I tend to giggle when nervous or on-the-spot, and his ludicrous question directed at the two most unlikely alcohol consumers in the world provoked a clammer of giggles that must have made him suspect drinking even more.
“What’s that?” he asked shining the flashlight on Isa’s nebulizer, which frankly, looked suspiciously like a mini bong. We explained that she was inhaling medication for prevention of infection for her lung transplant. He asked more questions about the type of medication, and ended with a compassionate, “I just wanted to make sure you gals were alright.” I prayed he wouldn’t shine his flashlight toward my boot cast above the gas pedal. After reviewing my license, insurance and registration, he kindly let us go, without a ticket, warning us to pay attention to the speed limit signs next time.

We made it through that, laughing at ourselves and the situation- being stopped by a cop in a nearly deserted town?

After a night at the Ellis Motel consumed with paranoia of bedbugs and highway hoodlums, we left early in the morning to enjoy a day at the Upper Klamath Basin Wildlife Refuge and the Lava Beds National Monument. We stood before the marsh lands of Tulelake, listening to dozens of migrating birds singing their spring songs. The sun shined on the snow that sat on the banks of the lake. Driving away, we were stopped by seven mule deer crossing the highway. It was wondrous and amazingly serene.

Our adventures in Lava Beds National Monument were mixed with historic sympathy at the area’s history, and awe at the geology of the area. It was the center of the Modoc War, where Modoc Indians fought with the US Military in the late 1800’s , evading escape for 5 months under the guidance of the famed Captain Jack Modoc leader. We were standing on sacred ground , remembering the battles of a near extinct people who lived in dire straights to preserve their homeland and culture. I am humbled to live on stolen land. The landscape of Lava Beds is sprinkled with ah-ah lava, similar to that of Hawaii, due to the volcanic eruption from Medicine Lake volcano thousands of years ago. This lava terrain became prime territory for the Indians to escape the Army. We walked to the battle site of the only Modoc victory as well as the site of Captain Jack’s stronghold , where he ultimately surrendered (he was executed of course, and the remaining 154 Modocs sent to reservations in Oklahoma). There are over 500 lava tube caves underground, many of which are open to the public for caving, at various levels of difficulty. Realizing that I would be in foot surgery 24 hours from that moment, I ditched the crutches, and went caving. We donned our N95 high filtration masks, and flashlights provided by the visitor center and went underground. Within 40 feet it was pitch black and I stepped carefully on rocky lava floors, moist and surrounded by the most amazing “dripping” rock formations. What a gift to be caving 8 months after my transplant! Caving with a boot cast is not recommended, however.

Realizing that we had a long drive ahead, we left around 3 pm and headed south to the site of the Japanese American Internment Camp. What remained was a barbed wire fence, and an engraved monument, plus a few suspected old barracks in the nearby town that we believed were from the 40’s. There was no visitor center nor a museum, almost as if our nation was trying to forget what had transpired.

Our long drive home was glorious . The sun was bright and the visibility magnificent. We drove south past Mount Shasta, being able to see clear to its snow covered top. We passed lakes , streams, blooming almond trees, more wildlife preserves and birding areas, small farm towns, and distance snow peaked mountains. It was moments like these that reinforced why I am stil living. What a heaven we live in. As one early settler of Crater Lake once said, “What right do we have to witness such glory of God?”

We engrossed ourselves in cheezyness, singing loudly to John Denver’s “Rocky Mountain High” and “Annie’s Song.” Only in the privacy of a car… We arrived home after 10 pm, driving over 400 miles on one tank of gas , thanks to Hybrid technology. Stenzel style, we didn’t stop for dinner and made it through the day with a food budget of $5.87 thanks to coupons and simple living. Our dog Rupie, to say the least, was elated to welcome us home.

What a wonderful trip. So much to see and do in life, it’s overwhelming. It’s wonderful to be back to life.
I wish you the same adventures and the opportunity to visit Crater Laka and Lava Beds National Monument sometime.

Hugs and peace to all. Thanks for your attention.

Ana

3/7/08

Dear Friends

Isa and I have received positive feedback about our blog and are so impressed that people are still reading it. Thank you for your faithful interest.

We are coming to the end of our exhilarating 9 day book signing road trip. We had two book signings in Seattle and Portland as well as two speaking engagements at medical centers, and a last minute impromptu lecture at a Genetics class in Eugene yesterday. In 9 days we have reunited with 10 friends from all walks of our life - including friends from high school, college and graduate school as well as genetic counseling colleagues and CF community friends. Our Thursday evening book signing in Portland at Broadway Books had about 30 attendees, including health care providers from OHSU and Kaiser Portland, as well as representatives from the Pacific Northwest Transplant Bank and the CF community. We were welcomed by Broadway Books , a mom-and-pop independent bookstore that exuded an intimate community ambiance.

Most significant for me was the presence of my dear donor family who drove long distances to attend. We had a private dinner before the event, where we laughed and shared our lives. I can attest that donor families are indeed angelic, they are a higher form of humanity, above and beyond the norm. I am especially grateful to my donor family for their courage to meet me and maintain a relationship with me, to come to our signing, despite the reminders of their loss, and for their ability to celebrate in our fortune.

The connections and reunions with friends during this book signing journey have by far been the best reward of this book tour experience. I left the Pacific Northwest with a warm and fuzzy feeling, the one you get when you connect with people. I am bathed in love, engulfed like a warm bubble bath and I thank you all for being my bubbles! I define happiness as “not wanting a moment to end” and this is truly it.

We continued on from Portland to Crater Lake, and spent last night in Prospect, Oregon, a small town of 500 located in the Cascades, approximately 50 miles from Crater Lake. It was a historic milling town, that prides itself on its beautiful water falls, historic hotel, library and school. We walked into a local café for dinner- the type of place that serves homemade pie and iceberg lettuce in its dinner salad. It was adorned with elk heads on the wall and hunting photos of prized game. It was like a scene from a movie- the bells hanging on the doors jingled as we walked into the dark room with a low ceiling, and all the eyes of the locals turned to us as we entered.

This morning we enjoyed a short hike in Prospect to see their famous water falls, and then we continued onto Crater Lake. It was a glorious day- blue skies and sunshine and the lake was a deep blue, reflecting its high cliffs in perfect mirror images. The stillness and calm of the lake was so striking that I could hear the silence. To be honest, the stillness and quiet was a real challenge for me. Snow covered the mountains like a sparkling blanket. To quote Forrest Gump, I didn’t know “where the Earth ended and Heaven began.” I walked with my boot cast, but left my crutches behind so that I could enjoy the snow. I am having surgery to put a pin in my broken foot on Monday, so I thought I might as well enjoy the last few days of freedom before six more weeks of crutches. Fortunately, walking was not painful. It was the first time I put my hiking boots back on since doing Half Dome in October 2006, and to be able to “come back” to my favorite pastime brought tears to my eyes. I was walking on snow at 7,100 feet elevation, with no breathing issues at all!!! What an incredible gift, considering where I was a year ago.

This past week was Part I of the Stenzel book tour road trip. Our road trips are characterized by too much stuff packed into too little space in the car, bickering and nagging, brute honesty (”you missed that turn, that was stupid”), backseat driving, getting lost, searching for missing items in the car, singing along to Indigo Girls songs, laughing hysterically, visiting small town diners to consume large quantities of authentic American hearty meals ( and making trips to the bathroom afterwards), praising God with each breathtaking viewpoint, talking a lot about our dog Rupie, eating too much and suffering the consequences and spontaneous detours to buy fudge and caramel apples. We repeatedly said, “Great Joy to be together” and that is so true.
As we drove we were surrounded by sensory stimulation - the vastness and beauty of the landscape, the sun on our faces, the sound of soothing music playing as we drove, the taste of chocolate as we snacked. A bit hedonistic, I realize, but truly an immersion into the art of being alive.

Part II of the Stenzel book tour road trip will commence in April as we traverse to Southern California, Chicago, Virginia, Raleigh, Charlotte, Baltimore, and Omaha. We hope our health and that of our hybrid car will allow us to complete this journey safely. That book tour will be about the “Power of Four”- four wheels, four weeks, four lectures, four booksignings, four tons of stuff, four national parks, and of course, four gallons of golytely.

I am rambled long enough and thank you for your attention.
I wish you many moments of happiness, and lots of love, health, and as many blessings as you bring others.

Love, ANA

Dear Friends,
Thank you for your continued interest in our lives. We apologize that our writings have become less frequent; our lives are full with book busyness.

Tonight, just a few minutes ago, four years ago, we heard the magical words as Isa lay dying: “We have lungs for Isa.” It is well depicted in our book, in chapter 32, but each Feb 5 we remember how our spirits were lifted up and hope prevailed with those incredible words. However, at that time, Isa’s donor family was grieving the loss of their precious 18 year old son, so we think of them tonight. Please join me in reflecting on this moment- the HOPE that transplant brings, the ability to lift families like ours from the depths of despair to the highs of elation when an organ is found. And we remember Isa’s tenacity in holding on… as if her spirit knew that a miracle would occur.

 On Sunday, I had my own miracle. I swam again after 11 months of not being able to do so. It was a glorious moment- to glide under water, to hold my breath, to feel the bath-like water of the heated pool surround me. I held my breath for 12 strokes and felt the muscles of my weakened arms work again. I came up from the water and said “These lungs are good.”   I hope to keep it up and train for the upcoming July Transplant Games. I am weak from high dose prednisone and have a broken foot that floats limp in the water, but nonetheless the gift of being able to swim again brought tears to my eyes and made me pray aloud in the water to praise GOD. Ah the privilege of being alive.

 Today, we had the privilege of meeting Francis Collins, head of the Human Genome Project and one of the discoverers of the CF Gene. He is  to genetics as Warren Buffet is to economics. It was intimidating to stand before such a brilliant and compassionate soul. His book, THE LANGUAGE OF GOD, discusses his views on reconciling science and religion, since he is a world reknowned scientist but a devout Christian as well. His work in genetics and his philosophical thinking epitomize a well rounded and deeply introspective genius.
To me, the lives of Isa and I symbolize that reconciliation between faith and science, for we wouldn’t be here without both- the love that God has shown us and the science that has allowed us to live. I highly recommend Francis Collins book for those of you with an interest in such matters.

I voted today, reflecting on the historic feat of finding a ballot with a woman and African American presidential candidate and propositions favoring Native Americans. The conservatives of the previous centuries may be rolling over in their graves. I hope this is a symbol of how far our country has come, although as we all know, we have a ways to go for improvement. I am honored and humbled to vote, and respect all candidates for their courage to confront the enormity of social and political issues that awaits them, whether or not they win. Bless them for their good  intentions.  

I will sign off prematurely now, with hopes to write again soon. I am off to see Francis Collins present again at Stanford.

Hope you are all well. Wishing you much hope, health, and the surroundings of love.

Ana Stenzel

Dear Friends,

Thank you again for your continued support and interest in our blog. Today, I’m proud to say that Isa and I are celebrating our 36th birthday. Unlike many people in the general population, we have no shame about announcing our age. The wisest thing I ever read in Glamour magazine was  an article on aging that stated, “the only way to not grow old is to die young.” And we certainly don’t want that, not for us, nor anyone . Thus, we celebrate another candle on our birthday cake, another wrinkle, another ounce of fat, another aching joint and poor eyesight, and even gray hairs- with a huge grin of gratitude and awe.

As a genetic counselor by training, I assess my age based on my risk of having a baby with a chromosome disorder  (as women age their risk of having babies with chromosome disorders such as Down syndrome increases). Last year, when we turned 35, I was ecstatic to reach what geneticists and obstetricians call “advanced maternal age”-  the age where women rountinely are offered amniocentensis when pregnant to test for chromosome disorders. Another unflattering medical term used for women over 35 is “elderly primigravida”.  Well, today, at 36, I’ve reached the age where my risk of having a baby with a chromosome disorder is now 1 /104, or 1%. In the big picture of my life, this is a moot point as I don’t plan to have kids (my lungs are my “kids”) but to reach the statistic of 1% is significant to me. I aspire to live at least ten more years, where my risk of having a baby with a chromosome disorder at the age of 46 will be 1/8! My ultimate goal, which I shared with Isa, was to live the same number of years with a transplant as I did with CF- so that would be 56- since I had my first transplant at the age of 28. My dear friend, Nahara, who turned 50 in 2007 with a CF Transplant, is my role model in that goal.

So today, I reflect on age, on years past, on the body’s resilience and the surprises that the universe has given me. I reflect on the very close call I had that I almost did not celebrate my 36th birthday. I befriended a wonderful woman with CF who lost her identical twin with CF in May 06, and her heartfelt sorrow in celebrating her first birthday alone without her twin. It pains me to think that Isa almost did that, and I am so grateful that hasn’t  happened yet for us.

 As we enter our 36th year, we are full throttle in the excitement of our book tour, of new possibilities and new goals. Many thanks to those of you who attended our December and January book signings in the Bay Area and in our hometown of Pacific Palisades. We appreciate the time and effort you took to come out during the cold and dark days of winter to listen to us talk and read, and to share in the moment of our book’s release.

Life is good, and we are privileged to be surrounded by good people like you who make our life so rewarding and fulfilling.

I am having a quiet birthday at home, relaxing due to an injured foot and head cold. But when I heal, I will celebrate my birthday with my favorite things:  a good hike and all-you-can eat Sushi. : )

For those who have reached out with birthday wishes, I thank you all for remembering and for your kind words of celebration. I am honored to be in the company of people who “get it.”

 Wishing you health and wellness on this rainy January day.

Ana Stenzel

 May God’s love be with you always (Michael Stipe)