The Joys of The 2012 Transplant Games and Japan musings…

I’m ashamed to say that I have not blogged since June. Where has the year gone? This year has been one of filling my days with returning to work in April, planning more film events and of course, healthcare. I have not made time to write for pleasure as I wished. Since my spring flurry of trips to Charleston, Seattle, Kansas City, Fargo, Minneapolis, I returned to work after 8 months of disability. Chemotherapy for small bowel cancer ended March 15 and how happy I was to have that over. It left me with aged skin, numb feet and the feeling that not all departments at Stanford hospital are created equal.

Outside of work, I focused my summer energy on preparing for the Transplant Games of America in July. As tea m manager for Team Northern California I worked with a committee to bring 58 transplant recipients, donor families and family members from NorCal to Grand Rapids, Michigan to compete in sports and celebrate the gift of life. As my 6th transplant Games, it was wonderful to be in a position of organization and leadership to allow new transplant recipients to experience the magic of the Games. For the first time , the 2012 Transplant Games were independently organized and run (rather than it being sponsored by the National Kidney Foundation) so it epitomized the truest depth of what the Games are all about – celebrating the gift of life, honoring donor families, and doing our best in our sport. Bringing the Team to Grand Rapids entailed recruitment, publicity, media exposure, fundraising and managing all the registration materials and scholarships for attendees. The highlight of my Games experience was swimming with Anna Modlin, our long time CF friend who was transplanted in November, 2010, and who is featured in The Power of Two. She had been a competitive swimmer in childhood, but had not been able to swim in over a decade due to the challenges of CF. Together with another dear teammate and two-time liver recipient, Jill Nolen, we won gold in two women’s swim relays – the 4 x 50 meter free and the 4 x 50 medley. I was doubtful, having finished chemotherapy only 4 months earlier and being very out of shape but with plenty of sports enhancing drugs- including energy gels, caffeine and inhalers, I was able to push my body in ways that scream , “ If it doestn’t kill you, it makes you stronger.” Wearing matching caps and suits, we cheered and cried in disbelief, doing our best in the most exhilarating team experience ever. Another challenge of my Games experience was doing a 4 x 400 meter women’s running relay at the track and field competition. There, in 92 degree weather, I ran as fast as I could, ignoring belly pain and heat prostration, to hand the baton off to my dear friend and 5-time kidney transplant recipient, Tiffany. We wanted to prove that as women in our 40’s we could still run. And we did! Thanks to a wonderful relay group, we won gold in that too. Our dear swim and track relay mate from 2008 and 2010 , Lara Borowski, who died in May 2011, was fully on our minds, and the emotions of her loss overcame me as many of us ran and swam for her. I know her spirit helped me do the best I could. God , I miss her.

In total, Team NorCal brought home over 38 individual medals & 16 relay medals, and a group of exuberant Northern Californians grateful for the life-affirming experience. At the Games we met more friends from all over the United States and were able to connect with this special community who really appreciates life and the gift of our donors.

For those in the transplant community reading this, I highly recommend the Games. I joked with my doctor that attending the Games should be a pre-requisite for all transplant candidates to get on the UNOS waiting list… One nurse we met who did a master’s thesis on what keeps transplant healthcare professionals from burnout, told me that her research showed that those healthcare providers who attended the Transplant Games were less likely to have burnout or leave the field. Amazing! so I truly recommend the Games – it will inspire your will to live, help you believe in your new body’s potential and remind you of the gift from your donor… For a recap video to gain more inspiration, please see: http://www.transplantgamesofamerica.org/special-events and let me know if you want to join Team NorCal in 2014 or attend the World Transplant Games in South Africa in 2013…

Immediately after the Games, I returned to the San Francisco Bay Area to attend the Annual CF Teen & Adult Retreat. This week-long events allows CF adults and their supporters to be together in a safe, healthy environment, for support groups, exercise activities and educational workshops. A one of a kind in the nation, this event screens CF patients for virulent bacterial infections and only allows CF adults with NO cepacia, MRSA and pan-resistance to attend. Strict cross infection hygiene measures are taken, and we think outside the box of the CF Foundation’s strict ban on CF patients coming together. We believe in safe sex, not abstinence and the ability to make informed decisions and adhere to strict hygiene measures to come together since the quality of life gained from knowing other CF patients exceeds the risk with proper screening. A music video of CF Retreat was made by some amazingly talented attendees, so if you have interest in seeing this special experience, please watch: https://vimeo.com/47548391 .

Two weeks after the Games, with increasing abdominal pain, I had a follow up appointment with my oncologist to discover that my small bowel cancer was back. This took me from the facade of being an “athlete” at the Games to being back in the realms of the patient-world , this time with harder news to hear. With little notice, I had to go on disability again, and on August 31, 2012 (4 1/2 months after returning to work), I had another bowel cancer surgery to remove another foot of my small intestine as well as my right ovary which showed evidence of metastases. They were not able to remove all the cancer as it was sprinkled throughout my abdomen like sand. Ironically, this surgery was almost exactly 1 year since my previous surgery . I felt like the entire previous year of chemotherapy was for nothing. For weeks, I cried every day and feeling the impending cloud of death from cancer over me.
Fortunately, because of the Games, I was in good weight and fitness , helping me recover from the bowel surgery easier than last year. Of course, it was still hell. I thank everyone who provided such love and support at this difficult time.
Four weeks after my surgery, I started chemotherapy- this time with another drug and higher doses. Believe me, coming back to the Oncology Infusion center was the last thing on earth I wanted to do and I felt emotionally miserable. During this time, I also busied myself looking into second opinions, reading the medical literature about metastatic small bowel cancer and trying to be as educated as I could to make sure I had the best care possible (which i still question). I sought a second opinion due to a very bad experience with the GI oncology nurse who was one of the most insensitive nurses I have ever met. I wonder why someone like that works in oncology where patients are dealing with such difficult news, uncertainty and anxiety. I am convinced that my expectations are high due to the exceptional care and compassion I have received from nurses (and other healthcare professionals) in the CF and transplant world. In addition, the GI oncologists at Stanford are spread very thin, and I was feeling anonymous. In late September, I went to UCSF for a second opinion and was very impressed. However, the physician told me the same bad news as Stanford and told me that their treatment protocol would be identical to Stanford’s. So after careful consideration, I decided not to pursue treatment at UCSF and stayed with Stanford – for now. It just makes things very convenient to have my oncology and lung transplant care in the same facility and not to have to drive to San Francisco every 2 weeks.
After my first chemotherapy, I felt queezy and had some typical side effects for irinotecan, which are intestinal upset. I thought it was just the chemo. Lo and behold, five days later, I end up in excruciating pain with a CF bowel obstruction! I was fooled by chemo and CF! How frustrating! So back in the hospital I go, for five days of no food and rigorous roto-rooter action to clear the cement in my gut. I need not say more than what a “pain in the ass,” literally.
The Power of Two film will be released in Japan on November 10, 2012 and we had planned the entire year to go to Japan in early October to promote the film. On the eve of my departure, I found myself in the hospital, in severe pain, and unable to eat. In addition, the chemotherapy had caused a drop in my white blood cells, making me very susceptible to infections. It looked like I would have to cancel my trip, to my devastation. I am not a quitter and after much determination, I postponed my trip rather than cancel it. After 5 “procedures” and 2 gallons of golytely to clear my gut, I was discharged on a diet of yogurt and tofu. I took a shot of Neupogen (a medication that increases white blood cells) and boarded a plane for Tokyo the morning after I got out of the hospital. It may seem stupid and careless but I just had to do it. I felt a strong calling. My mother and Isa were already in Japan; Isa was doing exhausting media interviews in Japanese by herself in Osaka and I felt bad to have the weight all on her shoulders. We are the power of two, not one, and I had to be with her. I took all the necessary precautions (packing extra antibiotics, Tamiflu and took the names of oncologists in Japan just in case) and said my prayers before making the decision to go. Needless to say, my husband was not thrilled. But I am not sure where my future will go with this cancer so I have to live in the moment and do what I can now.
Despite the 22 hour door-to-door trip to Tokyo, once I arrived, and felt the Tokyo air, all my worries dispersed and I felt I did the right thing. I absolutely love being in Japan. My trips there possess a familiarity yet a distance, and I am constantly learning new things while cherishing the familiar things I love most- the food, the shops and the people.
The next morning we had some free time, so Mama took us to the neighborhood in Tokyo where she grew up a few years after the war. Amazingly she was able to retrace her steps 60+ years later from the Ebisu train station to the location of her former home. Though new buildings stood on the property, Mama recognized the homes of the neighbors. She also took us to her old elementary school which had recently celebrated its 100th year. Most significantly,Mama took us to the church where she and dad got married in 1967. It was rebuilt as well. Since it was Sunday morning, we entered just to find the morning service ending. We met the pastor and told him of Mama’s history and our reason for being in Japan. He sat with us in the church and together we prayed for health. What a blessing that was. In my busyness I had been a bit distant from God and it felt so good to be praying together here in Japan. It’s hard to believe that this building was where it all began- my parent’s life together and this crazy CF journey. As we left, we chatted with some church members who were gathering for tea. An elderly woman called out to Mama, “Arima-san!” with an enthusiastic greeting. It turned out this was a 94 year old dear friend of my late grandmother. What a coincidence! She was amazingly well for her age, taking the train and walking to church twice a week. What a gift to feel a part of my grandmother’s history right here in the church where Mama got married.
That evening, we had the first public film screening of The Power of Two in Tokyo. Organized by our Japanese film distributor and Japanese associate producer, Naomi Takeuchi, the screening was shown to over 400 people. These individuals were requested to help create a “buzz” about the film by sharing it with social media and writing reviews. Media was also present. The most wonderful thing about that night was being with our preschool friends, Naomi and Akemi Takeuchi. Since the Takeuchi’s moved back to Japan in 1986, it is rare that we are all 4 together. Now in our 30-40’s , what a gift to be grown up women together and to share life together.
Some other wonderful guests came to the film screening- my father’s physics colleague and his family, many friends and some very important members of the Japanese transplant community. The film was newly subtitled and the crowd seemed to “get it.” We followed the film with Q&A in Japanese, with the assistance of Naomi who was not only our trip manager, but also our translator. We couldn’t thank her enough. If only we had taken our Japanese studies as seriously as they did as kids, we wouldn’t be in a position of speaking half-assed Japanese. The audience asked some very interesting questions including our opinions about the Japanese organ donor situation, how to deal with chronic illnesses, and how to educate the public about organ donation.
The next morning, we took the bullet train (Shinkansen) to Sendai, north of Tokyo and the epicenter of the 2011 Japanese earthquake and tsunami. We had been invited to speak at Tohoku University, one of the most prestigious universities in Japan, by a nephrologist whom we met at Stanford’s Japanese medical student exchange program. Dr. Kiyomoto is a wonderful human being, and we had met him during our trip to japan in May, 2010, when he was working in Southern Japan , in Takamatsu (where we lived in 1995). He has since transferred to Tohoku from Takamatsu in early 2011 just before the earthquake. Dr. Kiyomoto had arranged a teleconference for our speech between the medical school in Takamatsu and Tohoku. Dr. Kiyomoto is head of MegaBank , a research institute funded by the Japanese government to study and apply genomic medicine. In particular, Dr. Kiyomoto’s research focuses on genetic predisposition to post-traumatic stress disorder, inflicted by the tsunami and earthquake. Many people in the Sendai region have PTSD as well as depression since the quake. Over 20,000 lives were lost- and there was definitely a feeling of depression in those we had met previously in 2009. We were able to meet the CF family that we met in 2009- The Adachi’s – who were pivotal in advocating for CF medications in Japan. Their 23 year old son, Akihiro, is in our film as well, and he was a fortunate recipient of a lung transplant on 12/25/10. Due to the new Japanese transplant law in Japan that went into effect in July 2010, he was called for his new lungs relatively quickly and surgery was done in Kyoto. He was there recoverying in Kyoto when the earthquake hit, so in a way, his transplant saved his life twice. Mr. Adachi, who is a psychologist, has been working with those with post-traumatic stress disorder from the quake/tsunami. His face was worn and burdened and we felt the unimaginable stress of his previous 18 months. When we visited Japan in 2009, Akihiro was pre-transplant and cultured MRSA, so we were unable to meet. This time, since he was post-transplant, we were able to meet for the first time. It was wonderful! I felt like he was a brother and to celebrate his new life was remarkable.

Prior to our talk, 2 Japanese medical doctors gave lectures on transplantation and genomics. I understood about 60% of the language. One was a fascinating talk on lung transplant in Japan. Apparently Tohoku University has done the most lung transplants, though still rare. And Japan as a whole has excellent survival rates for their transplant recipients. Following our speech, “The Power of Two” film was shown. It seemed well received though it is hard to tell with Japanese since they don’t often express their true feelings. We were able to do a Q&A with Akihiro joining, who gave a short speech about how grateful he was and how his perseverance paid off to fight CF. It was so wonderful to be on stage with him and especially to see a Japanese patient share their story ( which is rare).
That evening we were taken to an authentic Japanese fish restaurant by Dr. Kiyomoto. Because of my low white blood cell count, I had to refrain from eating sashimi which was very hard. Dr. Kiyomoto and two of his colleagues treated us to a gourmet and exotic meal of squid, beef tongue, beef intestine (I passed on that – not sure how that would get through my own intestines!) , charred rice balls and tofu. As we left the restaurant, the enthusiastic waiter pulled a live turtle out of a tank and showed it to us. This was a specialty of the region, and was known for a bite that could take a finger off. A patron could order this turtle (killed on the spot) and grilled, for a mere 9000 yen (about $100). The turtle floundered about, and suddenly stuck its neck out towards me , startling me. That’s the last thing I needed with my low white blood cell count was a turtle bite!
After a short jet lagged night with ineffective Ambien, we were met in the morning by Dr. Kiyomoto who graciously took the morning off from his very busy schedule to take us around the devastation area from the quake/tsunami. For the first time, I saw open space in Japan. But it was eerie- except for a few destroyed remaining houses, the area had been cleared in the last 18 months. Only remaining were foundations of homes and grass growing where you knew was once a thriving neighborhood. Dr. Kiyomoto was the head of the Tohoku recovery/rescue team and he was deeply engaged in the quake rescue/recovery efforts. Unfortunately, according to him there were almost no survivors and he had the mind-boggling task of collecting dead bodies that were drowned in cars, caught in trees, or stuck on rooftops. We found a small hill about 30 feet high that was historically a fisherman’s lookout and the location of a shrine, now washed away. From the top of the hill ,we could see miles of devastation, emptiness and lonely empty streets. A graveyard in the distance had a few tombstones scattered about, with most urns washed away , and only the heaviest stone Buddhas remaining in a pile. Clean up crews were operating bulldozers in the distance, and there were huge separated piles of wood, scrap metal and concrete- typically Japanese recycling and efficiency. On the top of the hill on which we stood were several memorials including 1000 paper cranes, some newly budding cherry blossom trees and a prayer monument donated by Rotary International. I could only imagine the devastation and misery of this place on 3/11/11. Dr. Kiyomoto showed us in the distance the senior citizen’s home and the elementary school , both used as an evacuation points, and both overcome by the 50 foot wave , killing all inside. It was truly an emotional morning – here we are fighting CF our entire lives, yet 20,000 people can lose their lives in one quick sweep of mother nature. And the composure of Dr. Kiyomoto was outstanding- he bore no signs of emotional distress- how did he do it? I was sensitive to the fact that we were being “tourists” and voyers in this place of loss , while reminding Dr. K of the trauma he endured. What a hero.
That afternoon, we headed back to Tokyo on the bullet train, soaking in the scenery of the autumn Japanese countryside. It was rice harvest time, and there were heaps of rice in empty fields lined up like scarecrows. The train stopped in Fukushima, the site of the nuclear disaster, and we looked at the city which seemed to be going about “ business as usual.” On the train platform, a woman carried her young baby on her shoulders, and I wondered about her exposure to radiation while pregnant. I don’t think Japan will ever be the same after what it has experienced. I admire the resilience and determination of the people to get through one of the most devastating times in history.

The last 3 days in Tokyo were spent with a few hours of free time (great for shopping) and media interviews at Uplink, our film distributor. Their PR/marketing/media crew had organized over 15 interviews. We sat for up to 4 hours in front of various reporters from different websites, newspapers and media groups to be interviewed about chronic illness and organ donation. Thankfully, Naomi was able to assist us with translation and my mother was able to participate in some of the interviews as well. One of the reporters was for a newsletter for the school system- as far as I knew this was one of the few rare chances to promote organ donation through educators. Some of the questions were tough- there was clear misunderstanding about brain death and many expressed a fear of donation. One said, “You speak of organ donation as an individual choice, but to us, that is not the case. It is a family choice.” We were asked how we can encourage donation in a family context. We were asked how the soul could reconcile itself if “disrupted” by organ donation. Some believed that the soul would be angry if it was “disrupted” by organ donation and this would haunt the afterlife. We were asked “how can we be so positive when we are sick?” by almost everyone. One reporter said that he heard of someone who was brain dead for 2 years and then woke up; how dare we think about donating that person’s organs? (Our answer was of course that the person couldn’t have been brain dead- it was a misdiagnosis). I was fascinated by the apprehension of the reporters, yet their sincere desire to hear our story and learn about organ donation was inspiring. One reporter , who had seen our film, said, “ I never ever thought about illness or organ donation before and now I am really changed.” That was wonderful.

At the end of each day of interviews, I left with a greater hope and love for Japan. Things are improving. There have been about 100 brain dead donors since the new transplant law was enacted in July, 2010. Though there is much work to be done, they are moving in the right direction. For our film to even be accepted and shown in theaters is a sign of a changing attitude and we are so excited and grateful to see what the future will hold.
In our free time in Japan, we found ourselves in the heart of Shibuya, which is the equivalent of Times Square x100 in Manhattan. The place is crowded, loud, bright and full of young people shopping and visiting bars, restaurants, karaoke joints and more. We dragged our poor >70 year old mother all over and she amazingly kept up. Japanese food and shopping is somewhat irresistible- and we had to be careful not to overspend. The shops are filled with adorable, unique Hello kitty-like stationary, socks, knick-knacks, household items and dishes- things that are uniquely different than those found in the USA. The department store basements were our favorite- that is where we find the most artful Japanese delicacies- rice crackers, red bean cakes, mochi, cookies, cakes and bentos. Since it is autumn, it is chestnut and persimmon season so the seasonal delicacies were even more appealing. Visiting the basement of a Japanese department store is like walking through a culinary museum. We reveled in the artful sushi and gorgeously wrapped foods that made our mouth water. Outside we were shocked to find a restaurant that served only whale! No comment here…

We organized a family reunion with Mama’s brothers and some key members of the Japanese transplant community. These movers-and-shakers in the transplant world had helped bring us to Japan in 2009 and supported our book tour. Now, like us, they were enthusiastic about the film’s release in Japan and its possible impact on improving the understanding of organ donation in Japan. We had a wonderful evening of good food, good company and fine conversation- and too much alcohol. Two people left completely inebriated – Japanese style.

Each visit to Japan brings me closer to a like-minded group and my purpose and will to live was re-invigorated . It was just what I needed after the last month with my emotionally devastating recurrence of cancer and being uncertain about my future and what will keep me going. My mother too, felt renewed positive feelings towards her homeland. Going to Japan was my turning point- after a few days of good food, lots of walking, purpose, and wonderful company, I felt completely recovered from my bowel surgery and obstruction and ready to take cancer head on with true Japanese “gaman”(perseverance) spirit.

We returned from japan on a Friday and I proceeded to sleep for 15 hours straight. The following 2 nights I slept 12 hours both nights. What a wonderful way to overcome insomnia! Jet lag works better than any Ambien I have ever taken!

I had another chemo and a week to rest until our next trip to Atlanta to speak at the Chest physicians annual conference. Stay tuned for that trip report. Sorry for the long blog post again , but there has been so much to share since June!

Thanks for your love , interest and support!

ANA STENZEL

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