Well, these weeks are probably the most hectic times of our lives. I’m en route to New York City, and I’m forcing myself to use this time to write this blog. Ana’s last blog about ‘The Power of Poo” received many comments—thank you to all her empathizers! We are always so humbled when we see who actually reads this blog!

After two years of anticipation, Ana, Andrew, Trent, Rupie and I finally headed down south on Thursday, August 18th, for the World Premiere of “The Power Of Two!” The day before, Ana was discharged from Stanford Hospital, went straight to her office and worked 4 hours (@$&#), and then rushed home and packed in a frenzy. Of course, Ana and I were on the phone late into the night with a panicked, “What are you wearing???” With our cars full of twelve different outfits to just try, and shoes and snacks strewn about in the trunk, we drove 6 hours to Los Angeles, with the radio blasting the soundtrack of “The Power Of Two.” Our hands rested on the knees of our faithful partners during the long ride home.

We arrived at my parent’s home, to quickly shower and get dressed for the evening activities. Unfortunately, my broken foot bone is still not healed and I had to add crutches to my clothing repertoire. There’s nothing more glamorous than crawling on my hands and knees up and down stairs and hopping all over the house!

We left the dog with Mom and Dad and head to Hollywood, making a mistake of taking Santa Monica Blvd. through Beverly Hills on a Thursday evening. We arrived at the Laemmle 5 theaters, at 8000 Sunset Blvd just in time. My heart jumped when I took the escalators up to the theater and saw OUR POSTER on the outside, alongside the other documentary and blockbuster posters. I couldn’t believe it— our film was finally going public!

We rushed inside the theater just a few minutes before the DocuWeeks Opening Night Screening of HBO’s autobiographical film on Harry Belafonte. While munching on a dreadful bageldog for dinner (Ana has ice cream, which was supposedly gentler on the tummy), I entered the long and informative life of this remarkable singer, actor and activist. It was a very well done film that captured my attention through most of the 2 ½ hours. I suddenly felt relieved our film wasn’t ONLY all about us. After the film, we head across the street for a Hollywood style party- where fashionable people mixed and mingled and shared their roles in the entertainment business. I shrunk away, not really being in this world. All I cared about was that Ana sat by the window since her white cell count was 3.0 and this room was teeming with germs. I hobbled to the corner as well, self-conscious that I couldn’t really explore the room easily on one foot. Oh, these bodies!

Thankfully, Imingled with a few great people, including our PR ladies, a wonderful Patch.com reporter, and an old acquaintance from the mid-90’s, Kirby Dick. Kirby Dick created the film, “Sick,” about our hero with CF, Bob Flanagan. Kirby came to our CF camp in 1995 to capture Bob’s last days there, and portions of the backs of our heads are featured in that film shoot from camp. We reminisced about Bob and our eyes twinkled with memories… what a gift from that party. It was worthwhile to go!

On Friday, Ana and I relaxed in the morning with our men and parents. Mom prepared another full breakfast and we chatted and caught up. Ana maintained a soft diet to ease her digestion pains. Then the family got dressed up because around noon, a photographer from Patch.com (whom we met randomly the night before), Michelle Paster, came over to take photos. We head down the block to the cliffs with happy Rupie to take creative shots overlooking the beautiful ocean. This scenery is what my childhood was all about. Michelle is a delightful, warm woman who really made us all so comfortable. I was happy my dad was finally getting some attention since he is sadly not featured in the film. Ana, in her uber thin frame, looked like a super model. The day flew by, and after a quick lunch, before we knew it, it was time to rush off to Hollywood again. We arrived in time for a quick Chinese meal across the street with our friend Francine B., who came all the way down from Northern California for this big night. We are so blessed to have so much support!

After dinner, we rushed back up to the theater, and soon met up with Sara and Anna Modlin, and their partners, who came down from No. Calif., for this big event, and arrived together with their extended family members. Anna was 9 months post-lung transplant, and looking great! It was such a celebration to be here with her- for her debut in “The Power Of Two!” I won’t tell you more- you have to see the film to see Anna’s story unfold in it!

Soon, we were surrounded by people. A woman approached us, whom we barely recognized, and it was Michelle G.- the clerk from Kaiser 7North’s Pediatric Floor, where we spent many weeks of our childhood. One day back in 1986, Michelle decided to come to work with a video camera— and shot some footage of Ana and me in the hospital. That footage ended up in the film! Michelle drove all the way from San Bernardino to see the film! Then, we met parents of CF kids and other disabled kids, my parents’ friends, my old respiratory therapist and her family, and so many others that are beyond description. My actor friend, Todd G., also showed up, which warmed my heart. It was such a gathering of love and support.

All in all, the DocuWeeks managers were very impressed with the numbers, saying our audience was the largest on opening night!!! Over the next 4 nights, probably over 240 of our friends/neighbors/family/coworkers/community members had seen the film!

Well, sad to say, on Saturday morning, Ana was seriously blocked up again. She was bent over in pain. Her cleanout at Stanford wasn’t actually complete, and after about four meals, she was stopped up again. Poor thing. She has lost 20 pounds and looks like a Hollywood anorexic or a refugee. She is now 25 pounds lighter than I am, and it’s very troublesome. After hemming and hawing for half a day, it was clear she’d have to get medical attention. Her morale was lower than ever, and the pain made her feel she was going to die soon. She broke down saying goodbye to me, that I was going to live longer, wishing me the strength to carry on this crazy Power of Two message without her. I hoped she was over-reacting, but with severe GI problems over the last 2 years, she was at her final straw. She desperately needs answers but there seems to be no one who really knows how to manage severe CF GI. With a few calls to Stanford, she head to the ER at USC Hospital, which happened to be the same ER as Los Angeles County Hospital. According to Ana and Trent and our parents, it was quite the scene, straight from TV, of crowds of poor immigrants and underinsured persons.

After a walk/jog and otherwise relaxed morning sans Ana’s medical crises, Andrew and I head to the Saturday screening of “The Power Of Two.” Again, we were greeted by friends, old and new… from college, Dad’s work, the CFF, the hospital, childhood, etc. Probably half of the audience was made of people we didn’t know. The questions/answers afterwards were brief but flowed nicely with good questions. Everyone wanted to know about Anna Modlin! I was thrilled to meet my CF friend from Facebook, the remarkable Clare Wineland. She is fighting a cruel degree of CF with grace and precocious maturity, and has been to the edge and back… so I pray our outcome is something she can experience some day. We ended the evening with a walk down the block to ‘The Counter’ burger joint, where the Cystic Fibrosis Foundation of Los Angeles arranged a benefit for them to receive some portion of dinner sales from our film participants. It was a warm evening of chatting, catching up, laughter and appreciation.

Sunday was similar. Ana had been admitted to USC Hospital and was stressed out by her pain, her dehydration and starvation, by advocating for her care, by not seeing competent CF doctors because of the weekend schedules, and by her phone calls of inconsistent information from Stanford Hospital. It was a luxury for me to escape that scene. Poor thing. I worried about Ana, but the show must go on! After a brief visit to USC with Mom and Dad, and checking in with Ana’s tolerance of the situation, we head to Hollywood, for the fourth time.

A party planned by One Legacy, the Los Angeles-based organ procurement organization, started around 2PM at the sushi restaurant next door to the theater. Many prominent members of the LA Asian-American community who were donation-friendly attended, and there was a tremendous amount of greetings and introductions. I was pleased with the presence of a few prominent Hollywood celebrities, whose names I won’t list here so they won’t feel used. There was a great deal of warmth and dedication and love among all those who attended. Amidst endless trays of sushi, several people gave speeches… including me. In Ana’s absence, I reminded people that “The Power of Two” is not just about Ana and me… that every recipient carries within them the power of two people—themselves and their donor. It was actually a pep talk for myself, that I could be whole and complete just by myself on this film tour. Finally, we watched the film with our largest audience yet– though truthfully I was hoping more people from One Legacy would’ve been able to watch the film following the party.

As the film was about to start, I came out of the bathroom to see a very, very sick young woman being wheeled through the aisle, oxygen tank between her legs. It was my childhood CF friend from Kaiser Los Angeles, Jessica! She was active on the waiting list for lungs, was breathing heavy under her mask, and her white-haired parents embraced me. It felt like a family reunion, so full of love and memories. I broke down, because this family has been through so much. Just 2 months ago, they lost their son to CF, suddenly. And now, they were here to see this film! I thought about how unfair life is, how sad it was that their son never had the chance to receive a lung transplant, and how all their hopes were now on their surviving child, Jessica, who desperately needed new hope to breathe easy. What strength they had to come to see the film!

After that, we gathered in the halls chatting with everyone we knew, until the ushers asked us to be quiet and we had to head out. Jessica and her family and my parents and Anna Modlin and her partner joined us for anotherChinese dinner together that went late into the evening, until Jessica’s face made it clear her energy was depleted. Dear God, please, please let Jessie receive the gift of lungs soon!

Monday- more of the same! But at 9am I had a webinar with Friends Health Connection, an online support group for the chronic illness community. Ana joined by phone when she could (aka between interruptions). At 10am we had another conference call … then we rushed out for the noon screening. We left our dear Rupie with our parents who eagerly wanted to dog sit during our travels. Andrew and I were surprised to see 20 people in the audience at this noon weekday screening, including our dearest friends Ronni and Mandy Sharpe, John Bartelt, Todd G again, CF friends’ parents, my long lost high school friend Shirley Yamaguchi, and several of my parents’ friends. We had a concise Q&A, and then after some more chatting, Andrew and I drove 6 hours home to Redwood City.

We’ve been home for 32 hours where I did laundry, repacked medications, worked for 4 hours, and now I’m on the plane heading to New York City. The party continues!

Sadly, Ana continues to be at USC Hospital, on Day #5. Her blockage is in her small intestine and is harder to clear than anything before. She has had 6 liters of gastrogaphin- the Drano of plugged intestines- to no avail. She is still not eating and her attitude is rather hopeless. I am so tired of offering suggestions and questions that either go unanswered or lead to nowhere. Thankfully, Trent is sleeping by her side, 24/7, with visits by my parents, so she’s in good company. The USC team offers many benefits over Stanford’s conservative style of treatment, so Ana is glad she has not been transferred. Sadly, she canceled her plane ticket to NYC, and has called off work for a while (hallelujah!), as she is in survival mode and needs to deal with her end-stage intestinal disease once and for all. Please keep her in your thoughts and prayers… surgery is still in the conversation, and please pray that her malnourished state does not lead to worse things….

Last but not least, today is my dear husband Andrew’s birthday! We sit together in the plane, typing away. I celebrate who this remarkable man is today. He has blessed this world with his love, dedication, hard work and resourcefulness. Right now, he and I are “the power of two,” since without his efforts, there would be no film, no film tour, no Isa in the state she’s in now. Happy 29th—oops, I mean 39th—birthday, Andrew!

Thanks for reading this very long blog. There will be more to report from NYC! I know I am among the luckiest people with CF in the world to share these stories with you. I am truly humbled and grateful for your interest and support in our CF-turned-book & film life adventure! I wish you and your loved ones health….

Love Isa

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