From Sacramento To Obama
April was organ donation awareness month which meant that we were busy as ever with the film and our duties as ambassadors for organ donation. On April 21st, I had a unique experience of joining Donate Life Lobby Day at the California State Capitol. Representatives of all four organ donation procurement agencies in California, plus the lead organization, Donate Life California, were in attendance to lobby in Sacramento for Assembly Bill 1967 which would mandate organ donation education as part of high school science and health classes. The night before I drove to Davis and stayed with a friend, so I could get up very early and be in Sacramento by 8:30AM. We met for a welcome breakfast in a hotel banquet room filled with about 100 of the top movers and shakers of the organ donation cause in California- Charlene Zettel (CEO, Donate Life, California), Tom Mone from One Legacy (SoCal), Sharon Ross from LifeSharing (San Diego), Katherine Doolittle (Sierra Donor Services) and Cathy Olmo (California Transplant Donor Network). Included in the crowd were recipient and donor family ambassadors, staff from the OPOs and familiar faces from the Rose Parade Donate Life Float and other transplant events. It was so humbling to be in such awesome company. We broke up into teams of about six people and were assigned to visit the offices of about 4-5 state legislators who had a stake in voting for Assembly bill 1967. There were a few speeches, press briefings and off we went. My group included Sandra Andrada from CTDN, a young Hispanic high school kid who received a liver and his parents, myself and a wonderful donor mom, Phyllis Monroe. We visited the offices of Senator Joe Simitian, and another legislator I shamefully can’t remember. One of the staff members was moved to tears with the testimonial of Phyllis, whose daughter passed away from a brain aneurysm and donated her organs. Interestingly, both of the assemblymen knew my brother-in-law, Andrew Byrnes who is very involved in state politics, and were familiar with The Power of Two film!
Around 11AM we headed to a press conference. For some reason, I was chosen out of so many recipients there, to give a short speech sharing the power of organ donation as a recipient. Other key speakers included the head of the DMV who works very closely with Donate Life to promote OD registration at all California DMVs. Also, the State Assemblyman, Speaker John Perez , who is sponsoring the Assembly Bill (AB) 1967 supporting OD education in high schools, gave a speech. His father was an organ donor and was featured on the Rose Parade Donate Life float as a floragraph a few years ago. Ultimately, like so many of us, it is personal experiences that influence our government leaders to take a stand on issues.
After the press conference, we walked over to a local restaurant for a group lunch of fresh Mex food. I sat next to Brother Dan and his wife Melissa. Brother Dan is from the Sacramento/Reno area; he is waiting for a liver transplant. He is a talented musician and artist; and has put together a TV show about organ donation. His tireless advocacy in the face of chronic liver disease was truly inspirational. The room was filled with people from all walks of life and all backgrounds, each there to show gratitude and share their story for a cause that is a matter of life and death for so many. What an honor to be in the midst of these fine people.
After lunch, we attended a meeting for the Senate Appropriations Committee, one of the first hoops to jump through to get Assembly Bill 1967 passed. A few people were selected to be speakers and provide testimony about organ donation education, and John Perez spoke as well. The rest of us, totaling about 80, sat in the back, like witnesses to a trial. Then row by row, we were requested to stand and come forward to the mike and quickly state our name, our affiliation and our support of the bill. Organ donation moves people, it is an issue that bonds humanity, saves lives, and seems like such a no-brainer to support (I’m biased obviously). The professionals at Donate Life California had already worked with educators to create a curriculum including a 13 minute video, so the cost to the state and the impact on educators to implement this bill would be minimal. After some moving testimony, including more tears among the legislators that sat before us, they APPROVED moving the bill to the next level. It was so rewarding to witness this and again, be a tiny part of the legislative process. How fortunate we are to have such support for organ donation at a governmental level.
When we visited Joe Simitian’s office, we met his assistant, Hank Brady. He told us about a breast cancer bill (State Bill 1538) that was authored by State Senator Joe Simitian that requires that women’s mammogram reports state if a woman has dense breast tissue. Apparently, mammograms are not effective in detecting breast cancer in women with dense breast tissue, and an ultrasound is better imaging for these women. Currently, many women are not told they have dense breast tissue and get false reassurance from their mammograms. This bill was introduced more than a year ago, and would require on a mammogram report that there be a simple disclaimer sentence to state if a woman has dense breast tissue, that mammograms may not detect cancer and further studies should be discussed with your doctor. This bill was VETOED by the governor last year! It humbled me to realize how much goes into such a seemingly simple course of action. Why would Gov. Jerry Brown veto that? We were requested to write individual or organizational letters of support. If you feel strongly to voice your opinion on this bill , Joe Simitian’s office would truly appreciate your letter of support. Contact me if you’d like a template or more information on how to write a letter of support. We can all make a difference.
As we walked the halls of the State Capitol, it was buzzing with crowds of people, all representing a different cause and meeting with legislators just like we were for their 10 minute meetings to plead their case. We saw groups of disabled individuals, veterans, and young people in matching business attire, carrying fliers and wearing pins, hats or other evidence of an affiliation. This was the truest of Democratic processes.
After a long day at the State Capitol, I headed to the Crest Theater, an old historic theatre in downtown Sacramento where The Power of Two was showing at 5:20pm. The event was organized by a wonderful, productive woman named Rebekah Kharrazi, who works with the governor’s office. Her father, Martin Kharrazi, was the head of newborn screening for CF at the State’s Genetic Disease branch. Rebekah’s brother has CF. She is a highly motivated advocate who almost single handedly created this event. She collaborated with the Public Health Institute, CF Research Inc, and other groups to bring people from Donate Life Lobby Day to see our film to end a very productive day. Over 100 people were in attendance and the film was very well received, culminating in Q&A with a distinguished panel after the film, with Brian Stewart from One Legacy, Carroll Jenkins from CFRI, Charlene Zettel from Donate Life California, me, and Senator George Runner, whose wife had had a lung transplant just 7 weeks earlier. Again, it was so moving to be among such giants in the OD world… pinch me, was I dreaming?
I thank many of my friends who came long distances to attend. After the film, Q&A and some socializing, I walked down the street where my friend from CF Retreat was playing with his band in a club. I watched for a few minutes before driving back 2.5 hours home. It was a long and incredible day. What a gift to be able to be a part of something so powerful.
The next day, our film showed at Stanford University in the evening as part of a special presentation with the United Nations Association Film Festival, which hosted our film in October 2011 as part of their festival. This time, the Camera As Witness Program, part of the school of education, sponsored our film in collaboration with UNAFF. Over 300 people showed up- it was a packed house! Unfortunately, many people got lost or had trouble finding parking (Maroon 5 was playing on campus that night) so there were many late folks but still it was very well received. The night was late with another successful Q&A, many book and CD sales after the film, I went home to catch a few nights of sleep.
The next morning at 7AM I flew out to Minneapolis, Minnesota, where I was a guest speaker for their organ procurement agency’s annual Volunteer breakfast. Arriving at a crisp 45 degree temperature in mid-April, I found my way to my hotel merely a mile from the Mall of America, the country’s largest mall. Needless to say but I had no inclination to visit that!
My hosts were Susan Mau Larson, staff at LifeSource, the organ procurement agency of the Minnesota and Dakotas State. We had met in March at the Fargo film festival. She invited me to a wonderful dinner of local Minnesota cuisine with other staff members at LifeSource, including Nikki, who was a Lifesource volunteer, had CF and was waiting for lungs for the past 2 years (too long!). Minneapolis used to be a milling town and old relic buildings of Gold Medal, Pillsbury and other famous brands told the history of the town. The Mississippi roared through the Twin cities, separating St. Paul from Minneapolis. The last time I had been in the Twin Cities was at the 2004 Transplant Games. At that time, we focused on the Games, had no rental car, and stayed in the dorms at the Univ of Minnesota. So I felt like I was visiting the city for the first time. However, this was my nineth event/trip since March so my enthusiasm to go site-seeing was not at its usual high level. Alone in my hotel room, I enjoyed chilling with my laptop and TV after the wonderful evening with such incredibly gracious hosts.
The next morning, I went downstairs to the hotel banquet room where the LifeSource Annual Volunteer recognition breakfast was happening. I met some familiar faces from the transplant games, and saw their powerful Donor quilt displayed in the lobby. Those quilts, assembled by donor family members, always move me. I met physicians from the Univ of Minneapolis and Mayo Clinic, two transplant centers and supporters of LifeSource. Speeches were spoken, awards were given and I witnessed another group of remarkable people joining together in the cause. There were donor families, recipients and healthcare providers of all ages in the audience. My short speech sharing my story and encouraging the audience to be advocates, write their donor families, and cherish the gift of life seemed well received. Though there was no time to show the film, the trailer was shown and there was further interest in bringing us back in the future for the film.
After the event, I returned to my room to take care of some email /phone business for the upcoming 2012 Transplant Games of America. As team manager for Team Northern California, I have been working to gather sponsors, recruit team members, gather application forms, and communicate with interested teammates. Since the Transplant Games of America are in Grand Rapids in July, it is getting busier and busier as we prepare for this magnificent event. Registration deadline is May 31st and we are up to over 40 members… If anyone from NorCal who is part of the transplant community wants to join, please contact me. I invite anyone reading this to see a 13 minute video to get a glimpse of what the Games are like: http://transplantcafe.com/video/2010-us-transplant-games .
On Saturday evening, after a short driving tour in downtown Minneapolis, I met Nikki and her husband at a much recommended steak house called Manny’s Steakhouse (www.mannyssteakhouse.com). I had not eaten steak in years due to my bad gut and was a bit apprehensive. This high end steak house featured Minnesota sized portions- a steak up to 16 ounces, a 3 lb lobster, and other pieces of meat that made me cringe. The menu was presented by way of a waiter pushing a cart with the “sample “ meats on plates covered with Saran wrap. I ordered the smallest steak possible and said a prayer. The last time I had steak I ended up in the hospital with a bowel obstruction. But since that was pre-cancer, I thought I’d try my luck. (needless to say, as I write this over a month later, I’m still paying the price).
The portions were amazing. We ordered a family style serving of asparagus and a baked potato covered with sour cream, butter, bacon, cheese and chives. No wonder the American healthcare system is in crisis!! Next to our table sat the manager of the Minnesota Vikings with 2 young hot football player recruits, eating the 2 lb steak like it was nothing special. Wow.
The night was long, the meal was enough to feed me for several days and I returned to my hotel room ready for a snooze and a bowel challenge. The next morning, I drove to the Farmer’s market to try get some souvenirs, but it was a cold, early Sunday morning and most vendors were not present. I continued onto a local park and took a walk in the woods, enjoying waterfalls, creeks, and quiet solitude before heading to the airport.
The next day, I returned to work after an 8 month medical leave. My wonderful co-workers welcomed me back with homemade Ana-banana bread and much orientation. Our clinic is now offering the latest in prenatal diagnosis technology- a blood test for pregnant women at 10 weeks that can tell them with 99% certainty if their baby has Down syndrome or trisomy 18. This test works by looking a free floating fetal DNA in mom’s bloodstream. Taking the test requires some pre-counseling and an understanding of what the test means. If it is positive, it is likely a woman is carrying a baby with Down Syndrome and an amniocentesis would be recommended to confirm. However, not every woman wants to know this information, not every woman wants an amniocentesis, so there are a lot of issues to discuss with women before taking this test. Stanford is one of the first hospitals to offer this new test, which I believe will soon become more prevalent.
Being back at work was good. I needed to focus, have structure and truthfully have an excuse to not keep running all over the country. The film will run its course and will continue on its own; our ability to attend every film event is no longer realistic. And it sure felt good to get out of my own story and focus on others. I am so fortunate to have a great job that welcomed me back and provides me with intellectual stimulation, fantastic co-workers and health insurance.
Unfortunately, three weeks into working again, I contracted H1N1, probably from the dentist, who was coughing and sniffling but claimed her symptoms were allergies. No less than 24 hours after visiting the dentist, I was achy and feverish, thrown on the couch for a good four days. Fortunately, I made it out alive without any hospital stay and with minimal nasal symptoms, thanks to Tamiflu. It was 99% severe body aches and fever. WTF. I know my body will tell me when it needs to rest after a busy three weeks of work, training for the Transplant Games and promoting the film. Crash and burn, Stenzel style.
Fortunately, I was well enough to attend an incredible evening last night with my brother –in-law Andrew Byrnes. We went to see Obama! Due to Andrew’s key role in California Democratic politics and fundraising for the Obama campaign, he had the opportunity to greet the President and take a photo with him during his visit to the Fox Theatre right in Redwood City on May 23, 2012. Isa was unable to attend due to a work commitment, so Andrew invited me along, posing as Isa. I was the least qualified to afford to attend such an event so I felt very privileged and secretly guilty. Isa and I crafted a plan where I would exit the building after 8pm when she would be available and then we would swap so she’d get a chance to see Obama too. However, with all the security and wristbands, ID checks, etc I quickly realized this would not be possible.
Around 6pm, Andrew and I (and about 100 others) waited in a reception area for about 2.5 hours, meeting and greeting Andrew’s political friends while I lamented over painful women’s shoes. Chemo neuropathy is at its worst even 2 months after stopping chemo, and standing for long periods of time is painful regardless of the shoes. Finally, we were invited with a small group of about 8 people to the back of the Fox Theatre around 9:15pm; and escorted outside the building to another back entrance where secret service people were all over. May I ask…. Why are secret service people almost always overweight, bald and super serious looking? We entered the backstage area of the Fox Theatre in Redwood City. There was a professional photographer set up facing a blue curtain with the American flag displayed. I started to get nervous. What do I say to the PRESIDENT OF THE UNITED STATES? What the hell am I doing here? Who am I to meet this guy!? I told myself repeatedly “try not to faint.” Then I saw him… surrounded by security . He is a slender man, not much taller than my husband (see the resemblance?) and looking much greyer and older than I recall. We were in line, Andrew in front of me, and each of us was introduced. I walked up to him, shook his hand. He put his arm around me. I told him I am a lung transplant recipient and thanked him for health care reform. We were rushed to take a photo and shuffled off. I could have said so much more to him but there was little chance to say more. I felt incredibly miniscule and insignificant. He looked me straight in the eye with such sincerity and said “I’m proud of you.” What?!! I felt like saying “no, I’m proud of you!” He has the hardest job in the world!! I was so star struck it took me about an hour to remember what he had said. It was a highlight of my life and a moment I will never forget.
We were shuffled out and into the theatre where we took our seats. There were a few speeches from people like the head of the California Obama campaign and the Mayor of Redwood City. Then a great 20 minute video about Obama’s accomplishments started and we all got pumped up. I felt like I was at an adult pep-rally. Finally Obama came on stage welcomed by a very enthusiastic and bright eyed crowd of fans. He gave a 30 minute speech and shared like-minded values that are so quintessential to my values and those of many in the Bay Area. I found it comforting to be among so many concerned citizens, cheering and hollering after every other sentence and really, really believing in Obama. He spoke of love not hate, equality not discrimination, growth not stifling, moving forward not backwards, choice not damnation, education not stupidity, fiscal responsibility not waste, protecting the Earth not abusing it… the list goes on and on. Personally, to me, a no-brainer. Obama 2012!!
It was an exhilarating night. After I shook his hand, I returned to my seat, then proceeded to disinfect as I usually do after shaking hands, with an anti-bacterial handiwipe which I have since written on with a pen “Obama 5/23/12” and framed. How ridiculous, but what the hell…
Today, Isa and I are heading to Honolulu for an invited talk at the CF Center there. Hawaii’s Coalition on Donation is showing the film there on Friday night and has lined up several media interviews. Then we will participate in a CF benefit called Great Strides on Saturday and a CF surf camp by Mauli Ola Foundation on Sunday in Honolulu. Life can’t be better! We are so blessed.
Stay tuned for a future blog post on our Hawaii adventures. Thank you for your interest in this long blog.