I’m on another trip. When is it too much? I am healthy, and feel great. I came home, went to the foot doctor, and got permission to remove this damn boot after 6 months. Hooray! I can walk! I can travel MUCH more easily! And, I still feel excited to head to the airport, to pull the rental car out of the lot, and to figure out what there is to see. So, I plan, go, plan, go. How blessed.
Last week, I spend two days home after returning from Japan. After a good 10 hours of sleep, I felt no jet lag. Then… laundry. Ordering meds. Packing meds. Re-packing. That was my focus, as well as giving my needy basset hound lots of love. Rupie has always had abandonment issues, but now that she has an incurable nasal cancer, she’s extra needy. I feel bad to leave her so often. I probably only have 6 more months with her… but at the same time, I can’t not live because of my precious dog. Right?… Right?
I head out to Anaheim, California from 11/2-11/6 together with my dear friend Michelle Compton’s “Breathing Room” project which was displayed at the North American Cystic Fibrosis Conference. This was a gathering of 4000 health care providers and scientists who discussed the latest clinical and basic research. This event is extremely humbling, as all these people are working so hard just for me. And, with all the love, passion and determination to end the suffering caused by CF in the room, I almost felt glad to have CF. On Wednesday evening, I spoke to the Psychosocial Working Group about living with CF, despite my concerns that my story is overtold. For rest of the conference, I sat at the booth of the Breathing Room exhibit, went from lecture to lecture, and enjoyed meals sponsored by pharma companies about the latest research. Pretty cool for me. And, despite being in Anaheim, I was Disney’d out and didn’t even think about venturing off to Disneyland.
As much as I often feel very ambivalent about my entrenchment in the CF world, these meetings make it very difficult for me to disentangle myself from all my CF ties. I want this world and I don’t want this world. The entire NACFC meeting for me was really a social event, as I seem to know so many people from pharma companies, CF education days, the internet, etc. I loved hanging out with my closest friends but would have also enjoyed mingling and marketing the film a bit more. Oh well, friends are most important. And this year, there were more parents than ever before. There were excellent talks by patients (Tiffany Christensen and Emily Schaller) and a parent (Heather Walter) and about parent/family involvement in CF care. Duh. At least the CF Foundation and CF medical teams are coming around and becoming more and more patient-family centered. That can only be a good thing. And, there was an excellent series of talks on end-of-life. Usually, these are difficult subjects for CF supporters whose eyes are on the cure, the prevention of lung damage, and the fervent belief CF will be controlled soon with personalized genetic medicine. We live in an age where we can deny that CF is still fatal, and think we can control every aspect of this disease with the multitude of weaponry that we have to fight it. But, just as I was in the end-of-life series, I got a text message from the husband of my childhood friend with CF, saying, “Jessica is on a vent. Please pray.” CF still kills, and still causes tremendous suffering for families. Thank goodness, many of us are living longer, but CF still sucks.
I came home to do laundry, order meds, pack and re-pack again for two days. My Rupie gets excited when I got home and then depressed when she sees the suitcase again.
Now, it’s the big eight day trip. Pray for Rupie! On Wednesday, November 9th, Ana, Trent, my mom and I head out to Las Vegas to drive to Utah for the Red Rock Film Festival. Once again, I left my hard-working, bill-paying husband home while I continued my eternal vacation.
This festival is memorable because it’s the first festival we were ever accepted into, back in June when we weren’t hearing any good news about festivals. The best enticement to this small festival was the fact that St. George, Utah was 46 miles from Zion National Park. Ana and I were in Zion in July, 1994, but due to the altitude and hypoxia, we did no hiking at all. The heat was also oppressive. Now, with new lungs, Ana and I were on a mission to hike like hell.
We arrived and went to our favorite restaurant during our travels: Cracker Barrel. I love the Southern food and cute gift shop, although most of the stuff is Made In China. We checked into our economy hotel, and then explored St. George. We drove to Quail Creek State Park around 4pm, walked around the shore of the Virgin River, sunk in wet sand and got muddy, and then explored Dixie Rock, a red rock landmark on the hills of St. George. The full moon rose after the sun set, and the nooks and crannies of the bulges of red stone grew dark. We wandered around some trails before bumping into two boys in camouflage, sporting a gun each. They were chasing each other. The gun was probably a pellet gun, or maybe paint ball, but I’m just not used to seeing people point guns to each other. You know you’re in a red state when…
After a classic American meal at Black Bear Diner, we went to bed early, excited for the next day. Early on Thursday, we head out to the park. It took about an hour to drive there, and we regretted we didn’t stay closer to the park. The sky was blue and the trees were speckled with green, yellow and dark red. The air had a chill but the sun felt warm. This is the perfect time to visit Southern Utah. After a quick visit to the Visitor Center and gift shop, Ana and I pushed Trent and Mom to hurry up and get to the trailhead. Ana and I have a sense of urgency when it comes to national parks. Or anything. We are like kids in the early hours of Christmas morning, where parents seem to move like sloths, or force us to eat a long drawn out breakfast before ripping open the presents. We only have two days and have to see everything! We were in our utmost impatient mood and it was way too late before we actually started hiking. Poor Trent had to tolerate some abuse.
We finally head to several waterfalls, which were very diminished this time of year. Except for the steeper rocky parts, the trails were mostly paved, indicating millions of visitors and the sensitivity of the Navajo sandstone rock. We enjoyed the crisp air and soon were sweating as we hiked up to the Upper Falls. Mom was in love with the scenery—all around us we were surrounded by towering walls of red and brown—at least 1000 feet up. The valley below was speckled with red, yellow and green. It was breath-taking—and breath-giving.
After a short 2 mile hike, we drove the end of the road to the Temple of Shinawava. We settled down next to a river and enjoyed a picnic lunch of pita bread, smoked salmon, tomato, and cheese. I cannot overemphasize the perfection of the moment. Then, the four of us head out to another paved trail called “Riverwalk Trail.” We passed artists who sat on the edge of Virgin River, trying their best to capture the impressive scenery with their painting. After a mile, we reached “The Narrows.” This is where heavy-duty hikers cross the rough river and hike an additional few miles, mostly thigh-deep in the water. Now, the water was roughly 44 degrees, and I couldn’t imagine doing that.
We survived that remarkable trail, and head into the car for a drive. My 70+ year old mother was getting tired of hiking, and my foot was throbbing. We had some time to kill, so we drove the Canyon Road (89) toward the Eastern entrance of the park. Keeping a childhood tradition, Ana and I held our breath while going through the mile-long tunnel through solid rock, much to the amusement of Mom and Trent. Of course, we each took several breaths- but it was pretty effortless! Ana joked that she was in Zion in 2005… so this is her third time in Zion, and each visit she had different lungs! Let’s hope she sticks with this pair for a while.
We parked the car on the side of the road, and frolicked around, scrambling up and down steep red rocky hills. We also saw a herd of mountain goats in the hillside. This was our playground, and I felt like a kid again, wanting to explore the rocks, hide in the caves, walk in the crevices, jump for joy… Doesn’t everyone feel like this when they see Zion?
Around 5pm we head to Zion Lodge, where the Red Rock Film Festival had its Opening Night dinner. We changed and put make up on in the car—very Stenzel. Unfortunately, the dinner wasn’t very well organized; it seemed there wasn’t a main host for the event, so we mixed and mingled with a filmmaker from Victoria, B.C., and a film fan from Hawaii. We all sat down by ourselves and enjoyed a meal. Then, at 6:45, we head downstairs to the theater in Zion Lodge to see the opening night film, called, “The First Movie.” This film was made by a Scottish filmmaker, who went to Gultapa, a small Kurdish village in Iraq. He showed movies to kids who never had seen movies before, and only knew of war. He then gave them flip cameras to record their own movies. It was a touching and very cinematic film.
We drove an hour back to the hotel and slept, eager to wake early for another big hike in the morning. Ana was the drill sergeant. We were out by 7:30AM. Again, we packed our nice clothes in the car, and head out one hour to Zion Park. We felt ambitious to do the Angel’s Landing trail, which is a five mile round trip hike, with 1500 feet elevation gain and 24 switchbacks. Mom felt determined. That’s where we get it from!
The trail was paved again, making it very easy for my foot and for mom. Luckily, the air was crisp and cold when we started at 8:40AM. I couldn’t imagine hiking when it was 110 degrees! As we climbed and climbed, the sweat dripped but the view became more extraordinary. It was a gift to view the canyon and the rocks from a different vantage point, not always looking up, but now looking down. Mom did great- she was leading the pack and huffing and puffing. Ana is probably the only double-double lung transplant patient on chemo who was on that trail! But Ana and I were the happiest we could be. Expressive and talkative, sharing what we loved about each detail of tree, each shade of red rock, each cloud shape in the sky. We were in Nirvana. It means SO much to us that we can do this. That’s what I mean when I say with CF, the highs are higher.
Finally, after endless switchbacks and about 1 ½ hours of uphill hiking, we came to a flat area called ‘Scott’s Landing.’ Mom decided to take a break and sat on the edge of the cliff to meditate and enjoy the view. You could see the Virgin River, thousands of feet below, with the speckled yellow, red and green trees. Ana and I checked our blood sugars, which were low, and gobbled up sugar, before heading out to the real challenge. The last 0.5 miles of the trail was rated as strenuous, and not for those with fear of heights. We would be holding onto cables, and hiking along a ridge of slippery sandstone, with some places only a meter or two wide, and nothing but 1000+ drops on each side. I was up for the challenge! So, with cameras and gloves on, we head off with Trent, who left a walkie-talkie with Mom.
With adrenalin pumping and fighting self-doubt, we climbed the first rocks and held tightly to the chain cable. Since this trail was extremely popular, people’s feet had made imprints into the soft sandstone, and it was easy to step in many places. But the trail was definitely steep- sometimes 45 and mostly 60 degrees or steeper. I used my arms to pull me up, my thigh muscles to push me up, and held onto the chain with my dear life. I didn’t look down. No matter what, don’t look down! God got us both this far, and we were not going to die on this mountain. We held on tightly. Only when we got to relatively flat areas, did we look over the edge and see the 1000-foot drops on each side. The views were beyond description – we were now higher than many of those 1000-foot red walls, and we could see all the way south out of the park and north into the park. The clouds started to part and the sun shined enough to warm us but not to strain us. We could see distant trails across the valley, and tiny sparkling cars below in the parking lots of trailheads. The world seemed so small, and our lives so insignificant when we stood onto of these million-year old rocks. I went ahead, and though I breathed heavy, I didn’t suffer at all. (Half Dome was much harder!) Only my foot ached, but my lungs were great! Praise God! Below me, Ana huffed and puffed, and her legs shook, but she DID IT. She is the strongest cancer patient I know. I couldn’t believe it. She was so happy and so full of life; her passion alone was getting her up that mountain. Trent followed Ana like a doting husband, making sure her footing was secure and taking tons of pictures. After one hour, we finally reached the summit. The summit was actually a long flat plateau, so we explored that while snapping photos of every possible angle. Trent called Mom on the summit with the walkie-talkie and we waved to her down below. We were just moving specks to her, though she said she saw us. Closer to the spiritual, we prayed for our friend Jessica, and asked God to give her this chance, to grant her a miracle, to let her breathe as freely as we could climbing this mountain. (If you are the type, please pray for Jessica too…) Ana was ecstatic about her achievement; and I felt so proud of her determination… and thankful for the doctors and researchers who invented a chemotherapy that could let her feel so good during treatment. It took us about 40 minutes to come down the mountain, where we greeted mom and replenished our fluids and sugars once again. In ten minutes, we head down the trail.
We were actually on a tight schedule, so when we arrived at the car by 1PM, we were thrilled. Our muscles buzzed and our cheeks were red. We did it! We made a quick stop to the Zion Lodge Gift Shop where mom did some Christmas shopping. Then we changed and put make up on in the car, and head back to St. George. Goodbye, Zion! What a gift to hike for two days in this magnificent park.. and yet we want to come again.
We just munched on snacks in the car, as we didn’t have time for lunch. We arrived at the St. George Arts Center, barely in time for our film screening. The Arts Center was a historic building with large rooms attached to a large hallway. A screen, chairs and A/V equipment were set up in each room. The technical preparation was impressive.
In front of the Arts Center, a man stood handing out programs for the Red Rock Film Festival. I’m not sure if there was any other marketing besides that. Hence, the theater was empty. Only four filmmakers were present, and thankfully, the community manager at Intermountain Donor Services (Utah’s organ procurement organization), Woody, flew down from Salt Lake City to join the screening! We were delighted to welcome him, and very grateful for his attendance. He also came with another guy who was a volunteer and a liver recipient. Despite about ten additional tickets being sold, this was our audience. Sadly, there wasn’t a whole lot of welcoming and positive energy in this festival, so we felt like we were on our own. Our Q&A was brief but we hung out with Woody afterwards for a short time. Oh well, we hiked Angel’s Landing, and enjoyed Zion, and the film festival was extra.
But, we did stay all afternoon, to watch several great independent films. I saw a film called “Question One,” a very unbiased film about the gay marriage campaign in Maine in 2009. It was excellent. Ana saw a drama called, “Heart of a Dragon,” about a man in a wheelchair who climbs the Great Wall of China. Mom saw another DocuWeeks film called, “Semper Fi,” about a marine who lost his daughter to leukemia, and uncovers the military’s secret dumping of toxic chemicals near military base family homes. Mom saw another film about a man in a wheelchair who climbs Mt. Kilimanjaro. Ana and I then saw, “A Fighting Chance,” about Kyle Maynard, a man born without limbs, who becomes a champion wrestler and sets a goal of becoming a Mixed Martial Arts fighter. It was very powerful, compelling, and made me feel like I haven’t done jack compared to him. Why was a film made about our simple story?
The gist was there were many impressive disability-friendly films in this festival. The high quality films were well selected. We truly appreciated that sensitivity and appreciation of those who recognize the value of life stories of people who’ve faced challenge. Clearly, the selection committee had a heart for human trials and triumph.
We left around 8:30PM, with no one from the festival staff around. Fortunately, there were evaluations that we filled out before leaving… We brought a box of pizza to the hotel. Mom passed out right away. I was so proud of her strength and accomplishment! I had an extraordinary day- one of the best hikes of my life AND a film screening. Today taught a lesson that our highs are very high, and also that disappointment is part of life. We haven’t experienced much disappointment with our film until this screening, but at least we were together, and had a great vacation.
Now I’m flying to Albany, NY after leaving Las Vegas.
Thanks for reading my blog and for being so interested in our travels. I truly appreciate your time to read my blabbing.
I wish you all a happy Veterans Day. This is also my Opa’s 104th birthday.