April: The Month Of ODing…

April: The Month of ODing…

Whenever spring arrives, I rejoice that I survived another winter. Our spring started with a bang, with a full schedule of speaking engagements and film events I finished chemotherapy in the later part of March, Thank God. It really starting to wear me down and I counted down each treatment with anticipation. Now I can de-tox although my hair continues to fall out, my skin is hopelessly dry and red, and my feet have been numb and tingling since December (chemotherapy induced neuropathy). That being said, I think I survived chemo pretty well and I am so grateful that it is over. Yesterday I had a CT scan to check for evidence of metastases, and knock-on-wood that will be clear. I will hear next week
April came and as Organ donation awareness month, our schedules were full! It was the month of ODing or “organ donation”-ing through speaking engagements and film events. I had to squeeze it all in between doctors visits prior to my return to work on April 23.
To celebrate the end of chemo I headed to represent The Power of Two at the Fort Myers Film Festival in Florida, bringing my husband, Trent, with me for a few days of warmth and sunshine. For the first time in months, I shed sweaters, slapped on sunblock and enjoyed a swim in the Gulf of Mexico. With my immune system slowly returning, I was cautious as I walked with numb barefeet on the seashore and in the water, hoping no strange sea creature would bite or sting me. It was the warmest ocean water I had ever swam in (either that or this new layer of body fat is helping) and I frolicked around in the water humming one of my favorite Bob Dylan songs, “Yes to dance beneath the diamond sky with one hand waving free, silhouetted by the sea, circled by the circus sands, with all memory and fate driven deep beneath the waves.. ” with immense jubilation. The film festival put us up in a gorgeous hotel overlooking the ocean with western Florida’s dotted islands and riverways visible from our 9th floor suite apartment hotel room. The Power of Two we scheduled on the peak time of Saturday night and we were grateful that my brother in law’s parents (Andrew’s parents) who live in Fort Myers were able to attend. There were about 50-60 people in attendance and the film was well received with a very interactive Q&A session afterwards. My only regrets of the evening were that I learned the hard way that high heels and peripheral neuropathy don’t go well together. I almost twisted my ankle on several occasions just walking from the hotel to the car; thank goodness for Andrew’s mom who rescued me with a pair of her flats.
On Sunday, March 25, we attended another documentary film called Ordinary Joe. It was about a regular guy- a roofer from New York- who was a Vietnam Vet and had developed compassion for the Vietnamese since his service days. Each year, he raises money and then goes to Vietnam for 2 months and travels around giving money to those in need- poor families, disabled people, orphans, children, etc. The film did a beautiful job of personal development, capturing Vietnam’s people and scenery and portraying a message that we all can make a difference. It was truly an inspiring film. Check out: www.ordinaryjoemovie.com.
After the film, we rushed down to Naples and grabbed a quick boat tour to see manatees. I know, it was a bit touristy, but how often do we have this opportunity? Trent and I love wildlife and nature so this was a wonderful private boat tour in a canal where manatees are known to visit. Manatees are decreasing in population in Florida, so we appreciated the opportunity to learn about them and have a relaxing boat ride. We also saw sting rays, fish, and even a bald eagle on the boat ride, as the quiet boat slowly drifted through narrow canals surrounded by thick mangrove trees.
We rushed back to Fort Myers in time for the festival’s closing Awards Ceremony. Gratefully, The Power of Two was awarded the Best Documentary. The hosts were so gracious and enthusiastic about the film- another humbling experience. I guess our producer did something right; Isa and I continue to think our story is not that big of a deal.
Our time in Florida was quick but enjoyable. It was a rare chance for Trent to join me on a film event, and for me to visit Andrew’s parents (Larry and Margaret) who are truly outstanding people in every respect. Florida has wonderful beaches but absolutely no mountains. Our attempt at “hiking” was walking in hot, muggy man-made wooden trails that are built over marshes with mangrove trees – the scenery didn’t seem to change. And we had to be on the lookout for bugs, alligators and panthers… Gee, we have it good in California.
We returned home and I spent yet another day on the computer catching up on email, doing laundry, refilling my meds, until the next day when we headed to Bozeman, Montana. Our connection from San Francisco to Salt Lake City was delayed and we had only 15 minutes to run from our arrival gate (C16) to catch our flight to Bozeman (gate F80). Since our first flight was a small plane, our carry-on bags were stored under the plane so Trent waited for them while I ran ahead. My de-conditioned body could not run, and my numb feet would not cooperate as I rushed as fast as I could to gate F80. When I arrived panting and sweating, I begged the flight attendant to hold the plane until my husband arrived with our luggage. She repeatedly announced, “If he’s not here in 1 minute we are closing the doors!” If we missed this flight, we would have to wait 8 hours until the next flight to Bozeman. I begged her to wait until I saw my dear husband running towards us rolling one carry-on suitcase in each arm with desperation in his face. Just as he neared gate F80, he tripped and took a nose dive on the ground with luggage flying and water bottles rolling away. The flight attendant finally had sympathy as he awkwardly stood up, and he limped into the gate. We made our plane … barely! That is the stress of travel … and this type of rushing is something I could never have done with my old CF lungs, especially at the high altitude of Salt Lake!
We were invited to Montana by the Cody Dieruf Benefit Foundation, a local non-profit that raises money to help CF families in need in Montana (www.breathinisbelievin.org). The organization was founded by the parents of Cody Dieruf, a beautiful 23 year old dancer who lost her life to CF way too early. We were also invited to give a talk to their local Café Scientifique, which is a science club worldwide that bring scientific speakers to communities. The Bozeman Café Scientifique was sponsored by Montana State University’s INBRE progam (IDeA Networks of Biomedical Research Excellence). We were able to meet scientists and medical professionals, who enjoyed our talk and asked excellent questions. We met several families with CF, including two adults diagnosed late. We met one woman who was very touched by our story, stating herself that she has a genetic eye disease and would soon lose her sight. I felt for her- living in such a gorgeous place, how would I do if I was in her shoes? Sight means so much to my pleasure in nature…
I found Bozeman a very friendly town, full of dogs off leash, outdoorsy people and just a dash from great hiking trails. The scenery was breathtaking- farming land surrounded by the Northern Rockies – snow capped mountains, forests, streams and lakes. It was a hikers and fly fisherman’s heaven! The main street had a historic hotel (1929), a historic theatre (the Ellen Theatre where our film was shown), outdoors shops, frontier like shops (antiques, mercantiles, pawn shops etc) and modern shops like organic markets and microbreweries. Outside the downtown were typical shops like Walmart (ugh), REI and of course many fastfood restaurants and churches. We happened to be visiting during Montana’s Future Farmers of America convention, so there were buses of high school kids at every hotel, including ours. Can’t say they were quiet…
Our film was shown on 3/30/12 in the historic Ellen Theatre. That morning, we were interviewed by Montana Public Radio for a health show hosted by nurse Rachel Rockerfellow. It will aire in a few months. What a wonderful opportunity to reach rural Montanans and talk about the gift of health and breath.
The film had been well publicized, resulting in approximately 80 people in attendance that evening at the historic Ellen theatre. A reception was held prior to the beginning of the film, and local bakeries and restaurants donated food. The organizers even got one of Bozeman’s only sushi restaurants (“where sushi is made by a real Japanese”) to donate sushi! Now that chemo was done, I ate to my heart’s content!
One woman walked into the film, stating that she was visiting Bozeman on business, walking through downtown, and saw the theatre’s marquee that showed The Power of Two showing. She happened to be a friend of one of our film’s cameramen, so she opted to come see it. She had just recovered from cancer herself. After the film, she came up and told me shamefully that she was a smoker. She stated that she smoked throughout her cancer treatment- even that didn’t stop her. But after watching our film she said she would quit that night. I was so moved. That is exactly what I want this film to do – to inspire people to appreciate breath.
The next day we were invited to a CF support group. Several CF families from rural Montana drove long distances to meet and greet with us. We gave a little powerpoint presentation about the tools to live well with CF and then just had a nice discussion. There are about 100 CF families in Montana and only recently was a CF center established in Bilings. Most families go to Seattle or Denver for their care. Many live in remote rural areas and are financially challenged (did you know that 30% of Montanans live in the poverty level?!). I couldn’t help but wonder if access to care affects life expectancy. We met several parents at our film screening who had lost loved ones to CF relatively young. Some families do not go to the doctor because they can’t afford the travel expenses or even the $25 copays to see the doctor. It was heartbreaking. One family had not yet heard of Kalydeco, the new drug from Vertex (also known as VX770) that repairs the genetic defect in CF patient carrying the G551D mutation (this made huge headlines a month or so ago). So it was clear that the CF experience of those in Montana is different from those in big cities and Isa and I did our best to share as much knowledge and advice as possible. It was immensely gratifying but also sad about the medical inequities right here in the USA. We learned that because there is no CF center locally, many healthcare providers do not know about the needs of CF care, and patients have such trouble just getting the respiratory therapists to WASH THEIR HANDS!
After a meaningful meeting, we drove two hours south to our much anticipated dream part of the trip- visiting Yellowstone National Park. Since it was early spring, much of the park was still closed to snow and only the most northern road traveling from Mammoth Hot Springs to Cooke City was open. Therefore we were not able to go south to see Old Faithful or Yellowstone Lake. Still we enjoyed the gorgeous drive through Big Sky Montana countryside, passing horses in fields, cattle ranches, small country towns, as well as the usual Waffle House, Walmart, Pilot gas, and truck stops until we reached the town of Gardiner, Montana, just 5 miles from Yellowstone National Park.
Now you have to understand that when Isa and I get to National Parks, we transform into giddy crazy nature-obsessed eager-beavers. We act like Elvis or Beattles groupies and get way too excited. Poor Trent had to put up with the blasting of John Denver on the radio, the desire to pull over at ever trailhead, the breathtaking “ooing and awing” and “praise Godding” that we repeat over and over at every scenic point, the sense of immense urgency since we only had “two days to see the whole park!” and the frenzied kid-in-a-candy-store spell that we fall into when we see brown and white road signs signifying a national park or state forest.
We made it to the visitor center, saw the orientation video and then ventured out into the main road toward Lamar Valley, also known as the “Serengeti of America” for its frequent visitation of wildlife (there are 59 species of mammals in Yellowstone). We were eager to see the North American grey wolf. There are about 370 in Yellowstone, in an area of 2.2 million acres. Fourteen wolves were reintroduced in 1995 after extinction by hunters. Yellowstone was America’s first National park, established 1872, and is the third largest national park. We pulled over and took short hikes as the evening was coming upon us, hoping to catch a glimpse of a wolf, bear or moose. We did see plenty of elk, bison all over the hills and roadside, and even coyotes. On one trail, we walked about ½ mile until three bison stood directly on the trail ahead of us and wouldn’t budge. The Yellowstone bison are the only genetically original bison in the United States (or so I was told) so that they are truly wild animals and have been known to gore and trample people who get too close every year. The scenery of the great North American Bison roaming freely brought back visions of my favorite film, Dances With Wolves. The millions of bison that roamed this area prior to the 20th century were nearly exterminated—when preservation efforts began, there were merely 24 bison (AKA buffalo) left. I realize I wouldn’t be living in Redwood City without Westward expansion, but the amount of destruction and disrespect for native land and people that happened in the process really makes me sick. Thank goodness for conservationists like Ulysses Grant, Teddy Roosevelt, Philetus Norris, Horace Albright and many others who took Yellowstone (and other national parks for that matter) under their wing and pushed regulations against poaching bison and other great animals.
As the buffalo stood in our trail, we knew they had right of way and it was their terrain, so we turned around and returned to the car. Our last walk of the evening was at the border of Montana and Wyoming . We walked along Lava Creek to a hot springs. Yellowstone is famous for geothermal activity (hence, Old Faithful) and there are many areas where hot water comes up from the earth and merges with rivers to form hot springs. I stuck my feet in the water, but without tevas, there were too many rocks for my sensitive screwed up feet to go further. So we just enjoyed the edge of the water and prayed that we wouldn’t catch some weird infection from the steam.
We spent the night in a wonderful hotel with a fully stocked suite 2 bedroom apartment for only $120 per night. Eager to get out and hike in the morning, the hotel was a mere “sleep, shit and shower stop,” and we headed out early to get a good hike in. We drove back into the park, after a stop at the local grocery story for breakfast muffins and sandwich foods for lunch. We started on a trail called the Blacktail Deer Trail, steering clear of the bison. We crossed a frozen pond, and plenty of snow patches that we had to tromp through. Between the snow was spring grass trying to make an appearance- not yet green, it was brown and withered from being buried during the winter. The trail led through meadows littered with buffalo dung, and we had to be careful where to step. We saw deep ravines, creeks, snow-covered mountain tops in the distance and soon we were far from any civilization. In the trail we saw bear paw prints- large and small, signifying mother and cubs, and occasionally we’d pass a pile of bones. At one point in the trail we came upon antlers of an elk that had been eaten by a bear or wolf pack. We held the antlers and they must have been at least 20 pounds (I needed help – God, I need to get back to the gym…).
After 2 hours, we decided it was time to turn back since Isa had a flight to catch back to San Francisco. (Trent and I were staying an extra day). We made a final sharp turn on the trail where it led behind a hill. We took some photos, drank water and within five minutes or so, headed back. As we turned back around the hill, right in the middle of the trail was a five foot long piece of elk bone, including the hoof, tibia/fibula and femur. I SWEAR it wasn’t there a few minutes earlier when we passed the same spot! In just the five minutes we were out of sight a large animal (bear?) must have dragged that down the mountain across the trail. Maybe it heard us coming and ran off. Hiking in bear country was thrilling… we walked while making sounds, singing and tried not to bring too much food with us. Luckily we didn’t have any direct encounters.
We drove back to the Visitor Center where our host from Bozeman, a CF adult named Laura, met us to pick Isa up. How gracious that Laura drove all the way to be a chauffeur to Isa while Trent and I stayed an extra day in the Park. As soon as Isa left, Trent and I returned into Lamar Valley using all of our possibly visual skills to try find wolves. We were unsuccessful, unfortunately. We continued driving to Cooke City, the end of the road on the northeastern side of Yellowstone. As we increased in altitude, so did the snow level. By the time we reached Cooke City it was as if we were in another season- it was still winter in this sleepy mountain town. I stopped at a small mercantile to buy some local merchandise. A wooden fire was burning and the locals sold handmade crafts, wildlife photography, jams and elk jerky. The store owner told me there was a grizzly roaming the town, hunting for a local moose. Those free roaming dogs should be careful…
As we drove back to the visitor center, we stopped at several places for brief walks, avoiding deep snow patches and bison dung. By then we had seen so many bison, the novelty wore off . Still when we came upon a herd crossing the road and had to stop as they surrounded our car and looked at us straight in the eye (no more than 2 feet from us!), it was truly majestic. Once in Lamar Valley, we got out of the car and walked around looking for wolves. Like they would really come near us ! They are such illusive animals. Though we didn’t see wolves, we did come across Sand Hill Cranes, who migrate through the area.
As dusk approached, it began to snow. Within minutes we were in a different world- the herd of buffalo was soon covered with a blanket of white as they stood motionless like a portrait you see in a museum- white powerful ghosts in the shower of snowfall. I felt like I was in a time warp or a dream. Too bad my crappy camera couldn’t capture it.
Since Montana is so north, it gets darker later, so we made it back to town around 8:00 pm to eat at Cowboy’s Diner, where I indulged in Montana microbrews and barbeque pork, talking of the day’s events and planning the next.
In the morning, Trent and I packed up, checked out and headed back to the Park. We only had a few hours as we had to head back to the airport as well. There was one other road in Yellowstone that was open for a few miles. It was the road heading south to Norris, and it was snowed in. We went to the end of the road, and then followed a nice hiking path that led to steamy fumaroles, smelly smoldering rocks and hot springs. With the snow of the previous night, the park had a different look and feel. There were very few visitors, which is the way I like it, and it was pure peace. We walked again amongst elk carcasses and bear foot prints, singing and speaking loudly to each other to fend off surprises. At one point, I stopped in an area dense with trees. I closed my eyes and listened. Just listened. Have you ever listened to nature just after a snowstorm? I heard birds coming out to enjoy the sun, snow dropping off trees, dripping of water and silence. Pure silence and solitude.
We had 2 hours left, so we decided to try one last time to go to Lamar Valley to look for wolves. The ground was snowy now, so we thought that may work to our visually challenged advantage. We drove for while, until we found several Subarus parked on the side of the road, with people standing outside with telescopes on tripods. These were the famous Yellowstone Wolf Trackers- a group of citizens who enjoy watching and tracking the wolves, just like some people enjoy bird watching. They had been there since 5:30 am, and seen two packs have a confrontation. One pack backed off and headed to the hills. The people were friendly and informative and allowed us to look into their specialized binoculars. There they were- a pack of amazing, precious, beautiful grey wolves. They were perched up on some rocks, way in the distance, too far for any human eye to see. I saw the silhouette of what looked like the alpha male. Some were curled up in a snow patch; others sat looking out as if they were returning our stares. This made my day. If I didn’t know they were wolves, they seemed just a group of dogs from the local dog park, with husky, sheppard and labrador features. Their maneurisms were just like dogs.
I think about stupid movies like GREY that just came out and propagates erroneous myths about these amazing creatures. I think about people who shoot them without remorse. How can someone not have respect for these beautiful animals? Maybe I’m jaded since Never Cry Wolf was another one of my favorite movies.
Finally it was time to head home. We drove back out of Yellowstone and towards Bozeman arriving at the airport just in time. Bozeman airport was the most peaceful, friendly and easy airport I have ever been to. Even the TSA security guard struck up a friendly conversation with us.
I had hit my 20th National park, but we just touched the surface. I’m determined now more than ever to go back in the right season where we can see more.
I left Bozeman with gratitude, a sense of community that no matter where we are from, the CF and transplant family welcomes us and rejoices in our film with us. We are truly privileged.
One week at home to recharge, do transplant boot camp, organize a Team Northern California kick off party, and attend a Power of Two screening in Modesto. Then I was off again to Charleston and Seattle for more film events. Stay tuned for that blog…
Thanks for your faithful reading of this long reflection.

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1 Comments to “April: The Month Of ODing…”

  1. Michelle S. says:

    Sounds like a great trip. You are both such an inspiration!

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