Doing what we do… 9/19/10

Hello, friends-

Thank you for your loyal support of our blog, website, book, film, film blog, facebook page, various fundraisers, causes, etc! Whew. I don’t know why we deserve so much support.

Well, Ana wrote the last blog (not that I’m keeping tally)- about her usual life. A free weekend. To do housework.

These last few weeks have been free for me; I haven’t traveled since my high school reunion a month ago. Whew! What a joy. I have tried to maintain a commitment-free weekend once or twice, but inevitably the calendar gets filled up. The word ‘balance’ does not exist in 2009 and 2010, but I vow for it in 2011! I spend my weekdays working on various projects, with my butt glued to the seat, and my fingers typing in a maniacly speed. Andrew comes home in the evenings and asked me what I did. I tell him ‘I don’t know’. Because I don’t. I’m possessed with things to do and I’m just doing them, hardly thinking.

But actually I am thinking. I LOVE writing for my Spirit Medicine Column for the United States Adult CF Association newsletter, Roundtable. I love preparing for and leading my writing groups at a local hospice.  I enjoy emailing my friends for their small but important role in our film project. I love reading the Heroes of Hope nominations and scoring each nominee with serious consideration. There are people with CF out there who are ultramarathoners, playwrites, artists, physicians- just phenomenally amazing individuals. I love planning my next talks and CF Education Day tour. I thrive off of planning next year’s CFRI Conference. I love being on calls with the Patient Affairs Committee for UNOS. I enjoy making time to volunteer for California Transplant Donor Network for various events in the community, and meeting such a loving donor family who invited me for tea afterwards. I also got engaged with an amazing group called “Breath Through The Static” ( where I’ll be leading support groups for teens who have lost a loved one to suicide.  Please, spread the word if you know anyone who would fit this unique but really needed group.

In my ‘free’ month, I’ve been blessed to have several visitors. First, a week after my reunion, my big brother got married to his longtime girlfriend and mother of his 9 month old baby. It was a beautiful wedding outdoors on a hot San Francisco day. My mom’s younger brother and wife came from Tokyo for the wedding, and our cousins also joined. Ryuta’s best friends, the groomsmen, where down-to-earth, loyal, caring, supportive friends, and I was pleased to see my brother having such a close network of friends and family there. He was a strikingly handsome groom- of course-! and his bride was gorgeous. The minister was the same minister as Ana’s wedding, Carol B., who is my Jazzercise buddy and former pastor. She arranged a sake-tasting to add a little culture to the ceremony; Ana and I both did a reading. My cousins’ 5 and 6 year olds were the flower girls. Little Chloe, my niece, sat quietly and happily on Obachan (my mom)’s lap. The reception was gorgeous; the food fabulous, the dancing great with so many young children; the only complaint was the night ended too soon. I feel so grateful that Ana and I are alive to witness my brother become a husband. Even the best man validated that. And Ryuta gave a touching speech with words I’ve never heard before- that his sisters taught him the true meaning of “fighting” throughout his life.

After the wedding, I enjoyed a free day of going to the museums with my parents, and then going to the beach with my cousins, Rupie and her kids and family. My oldest cousin’s 17 year old, from Berlin, is staying in Seattle for the year as an au pair. She was a welcome addition who is adjusting to a life of English and her American family. We frolicked on the beach, buried the kids, had a picnic, and waited in the car driving for 45 minutes while the 5 year old had a serious meltdown and screaming/splaying fit. Very interesting. Moms, Dads, I commend you.

My good friend Tiffany Christensen ( arrived for a few days in early September. It was as if a sister was visiting. How blessed are we to connect so genuinely and deeply with another human being. We didn’t ‘do’ much at all- that was what was nice; we just shopped, ate and related. She did attend our lung transplant support group and offer an AWESOME lecture about what she learned as a double double lung recipient. We want her more on the West coast!

And, finally, I’ve spend many of my days trying to plan our October 16 big final invitation-only fundraiser in San Francisco for the work-in-progress film screening. This is it; it’s finally close to being finished. It’s very very difficult for me to ask/solicit my friends and community, because there are so many causes- especially CF and transplant-related ones- and it’s very awkward to be such a focused-character in this film. I hope I didn’t offend anyone from soliciting yet again. It’s the way of the business. It’s very painful for me to do this. I’m very touched by those who’ve responded, those who’ve donated, and those who will be able to attend. I am especially touched by the passion of the UCSF CF and Lung Transplant community! For those who haven’t responded, please let us know if you can’t attend. That helps us close the loop a bit on our records. I’d rather hear you can’t come or donate than not hear anything at all…. thanks.

I kept the best story for last. Ana and I absolutely needed to get away and escape this high-paced life. I felt guilty because so many of our film crew are slaving away, around the clock, sweating, screaming and freaking over finishing the editing of our film before the Sundance Film Festival submission deadline of September 22. It is very stressful and difficult work. I commend them! But we HAD to get away… for our health. For our sanity.

We plan a weekend backpacking trip every weekend after Labor Day. Unfortunately many friends couldn’t make it this year, but Joi, our best friend from Stanford, and Joshua, our brand-new lung recipient friend, were able to join us. Two days before departure, though, Ana was admitted for an infection on her skin, after falling over furniture on the way to the bathroom in the middle of the night. Can you say WTF?? She had a swollen, red, bruised shin, and luckily was discharged on home IVs for 2 weeks. With much regret, she didn’t backpack but came along anyway with Trent to stay in a hotel. VERY VERY hard for her to refrain.

The five of us drove to Weed with Rupie, and the next day, head for the hills. Our goal was to climb Mt Eddy, 9200 feet, next to Mt. Shasta (12000 feet). It was a straight-forward 3.5 mile hike, with only 400 elevation gain. Rupie even wore a little red backpack, and hobbled along, sniffing and being in doggy heaven. She was so strong, and so excited! But my poorly packed backpack and my lack of exercise made it so hard . I kept telling myself, “I love this, I love this- but when is it over?’ My back, shoulders and hip were killing me.  Oh, I hate feeling older.

We made it to Upper Deadfalls Lake. Joi had enough, and wanted to rest. We ate our lunch. It was a perfect sunny day- not a cloud in the sky.  At 3pm we felt a sense of urgency, so we left Joi to relax at the lake with the gear, and Ana, Trent, Isa and Joshua marched up the mountain to reach the summit. About 1/4 mile into, Joshua slowed down. He was looking pale. We had been at 3000 feet at the hotel and now were at 8000. He was 6 months post transplant!!!!!!!! Thankfully, he knew his limits and the signs of altitude sickness. He returned down to be with Joi, after losing his lunch on the way down…

I marched up, and Ana followed, Trent reluctantly, because “he’d never hear the end of it”. Soon the trail was straight uphill and with continuous gasping. Rupie head the way. The path became more gravelly and steep. Ana and Trent debated turning back a few times, knowing they could end up hiking in the dark. I kept saying, my Dad’s style- “We’re ALMOST there! Would you want to turn back now, when we’re so close??!”… and so we kept going. An hour uphill, at 9200 feet, we made it to the Summit! On the West we saw glorious Mt Shasta, almost all brown with specks of white. On the South we saw Mt. Lassen, and a range along it. On the East we saw the Trinity Alps and the clouds of the coast 100′s of miles away. On the North was saw more peaks of Oregon, near Crater Lake, and then the valleys below where there were square cookie-cutter farms. OHHH! I wish you could see it- all my CF /transplant friends could see it!!! It’s like I died and went to heaven. My lungs felt absolutely amazing. So clear. So fresh. So strong. So FREE. It was September 11. This was a day of death in US history. September 10 was my donor Xavier’s 25th birthday. I wore his photo, I thought of him; I breathed deeply and thanked him. Ana and I embraced, took silly photos and video; and rushed down.

Ana and Trent took off immediately, and since Joshua was still altitude sick, we piled on our packs and went a little lower to Lower Deadfalls Lake. Joi and I set up camp while Joshua lay there catatonic. I pumped fresh water, boiled water for freeze-dried dinner, served Joi and Josh and Rupie, ate happily, and enjoyed the darkening night. Pee’ing in the woods makes me excited. As darkness approached, we needed to string up our food pack since it all didn’t fit into the bear canister. Joi and I took turns throwing a rope tied to a rock over a dead tree branch, and watched bats fly frantically out of the tree in the dusk. Finally, when all was set and done, we snuggled into the tent- without any rainfly cover- and stared at the magestically clear stars, thanking God and wondering why we were so lucky. What a gift to share this moment with dear, dear close friends. Poor Josh was alseep hours ago.

The next day we woke early, tried to stay warm and watched the sun rise over the lake. It was Heaven on earth. I couldn’t sleep at night because I was just so, so, so, so happy. I hope other people have this reason for insomnia, at least once in their lives.

We packed up slowly, and reluctantly head back to the trail with slightly lighter packs, vowed to pack less food next time, and made it to the car by noon to meet Ana and Trent at our favorite pizza parlor in Dunsmuir while Rupie collapsed in the car. (Ana did her hygenic IVs in the hotel).

It was another successful healthy backpacking weekend. It was busy, hectic, sleep-depriving, but this was balance, because it was EXACTLY what I had wanted to do once this summer. My achey foot cooperated. I got my nature fix. I was refueled for the next hectic months to come.

In 3 days Ana and I head to Chicago and West Virginia. The following week I head to Florida and Dallas. I am ready.

Thanks for reading this long, drawn out blog. Don’t mean to just report on just me- I’m happy to say miracles continue… a friend at UCSF received her double lung transplant and is doing as well as can be expected. My friend Anna M. is still patiently waiting… 5 weeks since listing. My friends in NC had a Lung Transplant Foundation walk today to raise awareness of lung transplant rejection research. My friend in LA was sadly not accepted for a transplant due to medical barriers. SO, SO hard. We are really the luckiest of all CFers, and I wish her other open doors…

I end by saying a HUGE HUGE THANK YOU to our editors- Tom, Tim and Matt, to Marc, Andrew, Kirsten, Nicole, Jennifer- and all the dedicated people who are working so, so, so hard to create a film you will want to see. Thank you all to our supporters and donors as well who are keeping these hard-workers going. THANK YOU. I am humbled for your generous spirits.

Thanks, take care, Lots of love, Isa

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