On The Road
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Wednesday, 01 December 2010
A Long Overdue Blog : Wisconsin and Iowa
Posted by Ana
A “LONG” OVERDUE BLOG: Our Visit to Madison and Iowa
After a quieter than usual October, we started another marathon lecture session in mid-November with four speeches in three states in six days. That’s the way we thrive, I guess… or it was just coincidence? Ready, set, go!
We started our speech marathon on Thursday, Nov. 11th, with an evening lecture at the University of San Francisco’s School of Nursing’s LUNG HEALTH EVENT. The event was open to interested nursing students and presented various booths on smoking cessation, asthma, and other lung diseases. Never mind that there was a smorgasbord of cookies and cakes for sampling at the event as well! That made my islet cells cringe with envy as I refrained. We gave a lecture alongside Dr.Steven Hays, who is the CF Adult doctor at California Pacific Medical Center in San Francisco. He was a training fellow in lung transplant at Stanford back in 2000 when I had my first transplant, and I remembered him vaguely. How amazing to be reunited TEN years later! Our lecture was well received with students asking great questions and seemingly attentive even at 8:30 pm. It is always a gift to be able to share with future healthcare professionals the behind-the-scenes life of people with CF, the lessons learned, and advice for healthcare providers who will deal with chronically ill patients. We mix didactic information from personal and professional experience amid heavy topics like compliance and end-of-life , while mixing in anecdotal stories and plenty of humor to add some levity when appropriate. We left that evening feeling fulfilled and blessed to have this opportunity to meet so many budding nurses-to-be. After all, nurses have truly saved us and impacted our lives in ways we can never repay.
I arrived home around 9:30pm, and added the finishing touches to my packing for Iowa and Madison. After only 4.5 hours of sleep, Isa and I headed to the airport in the dark at 4:45 AM . As we boarded the plane, we recevied a call that our dear friend Anna M., who was waiting for a lung transplant, received “the call” that a donor had been found. We regretted that we were not with her at Stanford, and said our “I love You’s” and other encouraging words before the flight attendant told us to turn off our cell phones. But as the plan touched down in cold and wintery Iowa, we received a text that Anna’s call for lungs was a “dry run” meaning that the donor’s lungs were no good. It was heartbreaking to hear that Anna would not get her transplant yet, but a relief to know that she would not be getting suboptimal lungs. (she has since been transplanted on 11/22/10)!
Isa and I arrived in Iowa City, Iowa, to a dark and leafless city, with temperatures in the forties, which was considered warm. For some reason these strong Midwest folks were walking around in t-shirts while Isa and I complained despite our multiple wool layers. Wimpy Californians!
We drove directly to the location of our talk the next morning to scope it out. We were speaking to CF families at their CF Family Education Day at the famous University of Iowa Children’s Hospital. We had to scope our parking, location, time to enter and exit, because our talk in Madison was exactly 3.5 hours away by car. Our talk in Iowa City was supposed to end at 10:30 AM and we were supposed to speak in Madison at 2pm. According to MapQuest that was 205 miles away , with a drive time of 3.5 hours. Door to door directions showed that the speed limit on some highways was 55-65 mph. So needles s to say, the stress of wondering if we were going to make our second talk was with us all along, and it was a bit hard to sleep that night. Shortly after arriving, the rain started, which made us more concerned about highway conditions and driving hazards. Would we make it to Madison on time? We devised a Plan B: that one of us would speak in Iowa while another drove alone to Madison.
Shortly after settling into our hotel we met our elementary school friend, Mieke, for dinner. By chance, Mieke was in graduate school for creative writing at the Univ. of Iowa’s famed Masters of Fine Arts program. She had just moved there in August, and was bracing for a mid-west winter from hell. Mieke had walked the Organs R Us Relay with my team back in 2007 when she lived in Marin County and I was facing bad rejection. We had sporadically kept in touch, and it was wonderful to reconnect… in Iowa City of all places. In the dark and rainy night, we drove around the small Iowa City downtown, spotting a lack of ethnic diversity, and large, robust, “corn fed” white folk from the University wearing Hawkeye t-shirts (the guys)and hoochy-mama clothing (the girls). I couldn’t believe they weren’t cold! Maybe the smoking kept them warm, who knows.
We enjoyed a fine meal at a local restaurant. In typical fashion, my gut was giving me hell even before we were off the plane, and I chose what I believed was the lowest fat item on the menu- Chilean sea bass with spinach and rice. Through dinner, we reminisced about our childhood together: the traumas of our abusive sixth grade teacher, and the impact of being raised by European physicist fathers. Her family immigrated from the Netherlands, and we shared memories and intimate stories of our European heritage. It was as if we could talk all night. But alas, a big day awaited us the next morning, so we returned to our Quality Inn and Suites before 10 pm.
The next morning, we awoke to more rain and dark skies. We dressed in warm layers and headed out after swallowing a quick continental breakfast. On my low fat diet, I ate hardboiled eggs and cereal with low fat milk, while the other guests around me, dressed in hunting camouflage and “God Bless America” t-shirts, ate Entenmann’s breakfast pastries, sausage, and stacks of biscuits smothered in lumpy white gravy. It just gave me diarrhea looking at them eat that shit.
We headed to the University of Iowa’s Children’s Hospital before 8 AM. The hospital facility of the University of Iowa is world renowned for excellent healthcare and the buildings alone were evidence of that. The massive buildings were all connected like Habitrails by tunnels and walkways. We were welcomed by Stacey V., a CF parent who organized the event. Due to our time constraints, she kindly rearranged the schedule so that we could speak first. We spoke from 9:15-10:15 to a very captive audience of parents and relatives of children with CF, and a few spouses of adults with CF. They were so interactive, nodding their heads, laughing at our jokes and speaking back to us with their hearts and eyes. As we spoke about the later stages of CF, and showed photos of transplant, I saw a father put his head down- I feared he was going to pass out. After our talk, as we were preparing to leave, that same father came up to Isa and, without a word, just embraced her. He then said that what he heard was so powerful, that he was having a panic attack during our talk. Still he said that our lecture was so important for him to hear. Other parents gave us feedback about how inspiring we were (even though I hate that word), and some commented how they had never met any adults with CF before and we gave them so much hope. It was and always is, so meaningful to me to speak to CF families. No matter where we are from or what our walks of life are, we are bonded by this disease.
Our talk was called “The 10 Things that gave us Power to Fight CF” and in this we discussed parents, seeking normalcy, self expression, our CF community, faith, acceptance, education and more. During the talk we weaved into each of these topics the various stages of CF including diagnosis, advancing disease and even transplant. It is a lot of information, can be quite overwhelming and often at the end parents are too stunned to ask questions. But nonetheless the feedback we get remains positive. At 10:20 sharp, we finished speaking and promptly picked up our belongings, said our goodbyes and thank you’s, and headed out the door for the Habitrail to the parking garage. Within ten minutes we were on the road, with a Mapquest printout, our GPS and our radar detector all ready for the fastest 205 miles of our life. No bathroom stops or lunch stops were permitted. For me, with my gut, that was going to be a challenge.
My mouth was dry from stress and from talking, and we drank from our Nalgenes eagerly. I brought food from California, including wheat bagels (Mieke told me it is nearly impossible to buy wheat bread at her local grocery store!) and trail mix and granola bars. How Californian! Isa drove while I navigated, keeping a close eye on the directions and the road for cop cars. Iowa is flat and unpopulated so the driving was easy. Luckily there were no University football games that day which made traffic light. Upon getting on highway 151, we noted the speed limit was 65, thank God, which meant we could go 75, California style. The scenery was flat corn fields with interspersed farm homes, barns, tractors, and silos. So Americana! Sadly the majority of road signs for food stops were for fast food, also so Americana. So even if we had time for lunch, the options were not feasible for my gut anyway.
About 100 miles into the highway, I noticed a brown lump on the trailer of a pick up truck. As we approached, I realized it was a dead deer! It was a large buck with antlers and all, tied down on the back of this car with blood oozing out of its mouth. As we passed the pick up truck, I saw that the driver was a burly, rough cut looking man dressed in camouflage. It was unlike anything I had ever seen. I couldn’t imagine driving on Hwy 280 or 101 here in the Bay Area, seeing a dead animal on the back of someone’s car. What would the reaction be in this area? Of course, we know hunting is big in many parts of the USA, especially during the fall but this was a shocking sight for us.
Despite the rain, visibility was good and we were able to drive without issue. Within an hour or so we came to Dubuque, Iowa, the famed port at the Mississippi River. After that, we approached the Wisconsin border as we desperately tried in unison to take photos of the “Welcome to Wisconsin” sign at high speed. Isa drove, and I finalized our next talk on the laptop. We gave each other feedback from the morning’s lecture and decided what we should have said, or should have omitted, and how the next talk would be better. I was so glad we did not split up; we share a brain, and I think our talks are more powerful and entertaining when both of us are there, doing our “twin thing” including reminding each other of forgotten points and even arguing about slides in front of our audiences at times.
Shortly after entering Wisconsin, we realized we had about 80 more miles, and about an hour and a half left. For all intensive purposes, we were making good time, but didn’t want to get complacent in case there was traffic in Madison. But then it hit- I had to pee. Isa insisted we had to keep going. I kept squirming, becoming increasingly desperate. Isa screamed, “ NO! WE can’t stop! Just hold it !” The urge to pee intensified, and I thought I was going to be un-ladylike (no big surprise).
“Oh my God!” I squirmed,” I have to go so bad!” I begged Isa to pull over. These desolate Iowan corn fields could use some irrigation. There was nothing but empty farm land and isolated country roads, no one would notice if I peed at the side of the highway. Isa screamed “ You’re not 5 years old!” What the hell was I thinking? I had lost all rationale.
Isa replied, “ Hold it! We don’t have time to stop! Use a Nalgene!” By then my Nalgene was empty anyway….
But then, just like that, for some unknown reason, the urge subsided and I was fine. What was that about? Probably just urine backing up into my kidneys preparing to give me some kind of UTI. WTF.
We entered Madison with a strong de ja vu. It had been 4 months since we were here for the US Transplant Games. We passed the hotel where we stayed, the convention center where the opening and closing ceremonies were held, the site of the Expo center where the Power of Two booth made its videograms of transplant recipients and donor families. However, instead of the nice warm muggy summer temperatures, we faced a gray, cold, gloomy sky with barren trees and foggy lakes. Winter was just beginning. At 1:40pm, we turned into the rented venue of the CF Family Education Day at the American Family (Insurance) Center . Thankfully, this location was a bit away from the University Hospital, which we were told was hosting a home football game.
We arrived 15 minutes before our scheduled talk. With a huge sigh of relief, we greeted our hosts, and within a few minutes I excused myself to go to the restroom. We gave a similar talk as we did to the morning crowd. Unfortunately, the talk was after lunch, in a large auditorium with very comfortable seats so the audience seemed a bit less engaged than the morning group. Nonetheless, afterwards we were swarmed with families for autographs of our book. Thanks to a grant, each family attending the CF Education Day receives a complimentary copy of our book. It was these one-on-one encounters after our lecture that allowed us to dialogue with families . We learned that some of the families had CF children who were infants. It must be very difficult for these families to hear us speak about transplant and end-of-life for sure. Wisconsin was one of the first states in the country that instituted newborn screening for CF so many of their patients are healthier due to earlier treatment for over a decade. The host director of the CF Center stated that pediatric lung transplant for their CF patients is almost unheard of, which was quite a relief, since kids don’t get that sick in Madison. We speculated that maybe it’s just so damn cold there that bacteria die and there is less infection risk. Can’t help but wonder.
We even met an Amish mother who was so young and had a young infant with CF. She seemed mesmerized and told us she had never met an adult with CF. Many parents truly seemed genuinely inspired and hopeful from our talk. That is, by far, the most gratifying feeling that comes out of writing our book. It’s better than the royalties, the press, the film… it’s about helping other families deal with this crazy disease.
After all the books were signed and families departed, Isa and I headed out into the cold dark evening sky. The wind was blowing hard and it felt like it was easily in the 30’s. Despite some confusion on the freeways and a lot of bickering and complaining about whose fault it was that we got lost, we backtracked and finally found ourselves back on highway 151 heading back to Iowa City at 5pm. This time the road was dark, the sky was drizzling and I drove with much more caution. We found ourselves getting gas just outside of Madison, and it was the coldest experience of pumping gas I ever had. Perhaps it was because I was wearing only a skirt with tights and a light sweater and coat, but I just couldn’t fathom having to pump my own gas in January when temperatures go well below freezing.
We found ourselves starving after no lunch and only a few snacks in the car. With ravenous appetites, we scoured the mini mart at the gas station trying desperately to find something somewhat healthy to devour. Isa wanted to get Ding Dongs but I quickly reminded her that her hunger caused her to lose all common sense, and that she should put that Ding Dong down immediately and walk away. Ultimately, we decided on popcorn and Wisconsin cheese curds and an Odwalla protein drink. We entered the car, turned on the heat, cleaned our hands with anti-bactierial handwipes and promptly spent the next 20 minutes driving in silence with our hands in the popcorn bag inhaling the scrumptious snack. Now that was hunger. Watch out- starving twins on prednisone!
After about two hours of driving through the dark countryside and empty highway, we entered back into Iowa and back through Dubuque, which was the adorable port town at the coast of the Mississippi River. The town had quintessential buildings circa late 1800’s, including a main street, harbor, train station, city hall and main square. There were brick buildings, church steeples, Victorian homes and antique shops. A number of people were assembled on that Saturday evening in the streets heading for the performance center where the US Navy Band was performing. Isa and I found a wonderful restaurant on Main street offering fine Midwest cuisine. With my gut acting up all day, I was a bit nervous to try Midwest food, but I vowed to try get the lowest fat item on the menu. The restaurant was in an old warehouse, with high ceilings with wooden beams and thick brick walls. The menu was filled with meat- and-potato types of dishes, with lots of butter and cream sauces. Darn , I was screwed. At least we enjoyed a nice salad and homemade multigrain bread first. For an entrée, Isa chose butternut squash ravioli with cream sauce, brussel sprouts and dried cranberries. I chose – believe it or not – the homemade macaroni and cheese. So much for low fat. I too was losing my common sense in my hunger. However this macaroni and cheese was the farthest thing from Kraft’s mac’n cheese. It was the real deal made of three types of cheese baked in a plate mixed with meat and peas. Unfortunately, it was swimming in oil, so I vowed to only eat half the portion so that I wouldn’t overload my gut. After a nice dinner in elegant ambience, we headed back to the car for an additional 2 hour drive. It was in the low-thirties, and walking back to the car pushed nippy air into my bones and my aching gut.
After two hours of driving through the dark and quiet drizzling night, with occasional hints of distant homes lit up in the darkness, we arrived back to Iowa City. Back in the hotel, we stripped ourselves of our frigid business attire and warmed our bones as we prepared for a good night’s sleep after a very full day. It was hard to believe we had driven over 400 miles in about 7 hours time.
The morning came after a rough night of multiple trips to the bathroom for me (story of my life!) and regrets of my dinner choice, but pain got in no way of my ambitions to sight see in Iowa in the few hours we had before having to head off to the airport at 2pm. We drove back to the University of Iowa to take a few photos of the campus for our scrapbook, and then found the banks of the Iowa River where I collected water in a vial for my souvenir collection.
We then headed towards Cedar Rapids to a classic tourist trap called the Amana colonies. The Amana Colonies of Eastern Iowa is a National Historical Landmark and is one of the longest living communal societies, founded in 1855 by leaders of a persecuted religious group from Germany called the Community of True Inspiration. They lived here as a communal society in 7 small villages which today have become open to the public and include restaurants serving German cuisine, bakeries, mercantiles, and old schoolhouses, churches and craft shops. The best part was that there was a 3 mile nature trail outside one of the villages so Isa and I could do what we loved to do on our roadtrips- cram hiking and shopping into a short amount of time in a rapid frenzy before our need to depart for the airport. We started our hike by bundling up and heading out in the desolate woods. Within a few minutes, gunshots were heard and we realized we were in the great Iowan outdoors in the midst of hunting season. Isa pulled her purple sweater close to her, hoping the color would make her more visible. We walked amongst gentle rolling hills covered with sparse maple trees as our feet crunched above the fallen leaves. The sky was grey and air thick with moist fog. It was crisp and fall like. The nicely marked trail curved through creek beds and over remnants of Native American burial mounds. In the distance we heard the railroad cars moving on a track. Within a mile and a half, we reached a cliff that overlooked the Iowa River, which snaked its way through a grey valley below.
As usual, my aching belly took its toll on the enjoyment of my hike, as I struggled with cramps, abdominal pain, gas and the need to go. I was thankful to have read the important nature book, “ How to Shit in the Woods” and will say no more. I realized then in my miserabl e state that if things continued this badly, my gut issues and nutritional deficits could possibly be the source of a downhill spiral health wise. Pardon me while I complain, but at times this is such a hopeless and desperate feeling that I live with daily. Even Isa was shocked at how I sustain with my f-ed up gut after witnessing this for a few days.
Enough bitching… in perspective, at least I was able to breathe in the fresh air, with open lungs and my heart beating fast with each step of our Stenzel-style march in the woods. Within an hour, we had done most of the 3 miles and jumped back in the car, heading to the next village of the Amana Colonies. Time was of the essence, and we gave ourselves a choice- German food for lunch, or shopping. We decided to forego a lengthy sit-down meal of more greasy food, and instead shop at the Amana Colony General Mercantile where we bought German goodies and Iowan souvenirs like corn, corn and more corn. Of course, I had to buy my favorite which I buy on all my road trips- a pecan log and fudge! Before departing we headed to the German bakery, eagerly anticipating buying German soft pretzels to devour for lunch in the car on the way to the airport. Unfortunately, the traditional German bakery was replaced by an American one which served pastries glazed in sugar and oozing with red jams, chocolate and other oil and sugar infused donuts. Sorry, not my idea of scrumptious. I was able to find homemade vegetable bread and bought that to go. Within less than an hour of walking through Amana’s quaint buildings and stores, admiring the traditional way of farm life and German heritage depicted through the village, we headed back to the airport.
The Cedar Rapids airport was the smallest airport I had ever seen. There was only one luggage carousal one security checkpoint, and one terminal with three gates. There were no food courts but only vending machines. We were sitting at the gate within 20 minutes. Lesson number 1: Do not arrive two hours early for small airports. We took a short flight in what seemed to be an enlarged Cessna seating about 50 people back to Chicago. Isa stayed in Chicago for a UNOS meeting while I headed back to San Francisco. It was a quick trip to the Heartland, but one that made me feel connected to strangers again through CF, and one that immersed me into the true lives of small towns, American style.
Within a week of returning from Iowa, I could no longer bear my gut pain and made the desperate call to the doctor’s office. An x-ray revealed that I was “FOS” which means “full of shit.” Believe it or not this is a true medical abbreviation! I found it so ironic that I would be FOS if I was not digesting much of my food and going to the bathroom up to 6 times a day. The CF gut is a true dysfunctional mess and mystery with no logic whatsoever. After a few days of increasingly miserable pain, I surrendered with a white flag to Stanford Hospital for Thanksgiving. Instead of turkey dinner, I got my ass roter rootered (3 times)and drank 2 gallons of golytely. Thankfully I was pain free for the first time in weeks. Sadly, this was temporary…
Thank you for reading this long blog and putting up with my constant references to my bodily needs. I’m sure people who have gut problems can relate to the all consuming obsession that results when the bowels are not functioning and showering oneself in misery. Intestinal transplant, anyone?
Next week Trent and I head to our honeymoon, where we will cruise to Costa Rica , Panama, Curacao, Bahamas and Aruba. I’m looking forward to warm weather and an adventure of a lifetime.
Love, your full of shit friend, ANA STENZEL -
Monday, 09 August 2010
Adventures at the US Transplant Games
Posted by Ana
8/4/10
It has been an eventful week with little time to blog about the US Transplant games until now, as I fly back to the Bay Area. For the fifth time, I attended the biannual US Transplant...
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Wednesday, 28 July 2010
Last Washington DC post
Posted by Ana
As we prepare for the next adventure, I forgot that I still had a blog post to share from the last one- the Washington DC trip. So here it goes, last but not least. Thanks for...
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Friday, 23 July 2010
Tales from DC Day 3 (better late than never)
Posted by Ana
7/16/10
After my first full day in Washington DC with ten members of our film crew, I was on cloud nine. I was amongst the most loving, caring, brilliant, hard working people in the Power of Two...
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Thursday, 24 June 2010
Breathe California: Bike 4 Breath & Education Series Podcast
Posted by The Power Of Two
On July 10, 2010, Anabel Stenzel will lead Team Second Wind in an annual fundraising...
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Friday, 21 May 2010
5-18-10 Post from Takamatsu, Japan
Posted by Ana
5-18-10 I am sitting on the Shinkansen , or bullet train, on May 18 enjoying the beautiful scenery of Japan. We are passing rice fields, bamboo forests and traditional homes sprinkled between narrow roads, man-made canals,...