4/25 – 5/9 (Mother’s day – getting transfused platelets)
Teri came home on 4/27 after her 3rd round of chemotherapy to weather her her nadir – when her marrow function when her white blood and red blood cell production falls following intensive chemotherapy – at home.
Speaking of weather, in the old days, just three short months ago, Teri and I would mark the days by the temperature, the sun, snow, rain, clouds, upcoming trips for any one of us and going out for occasional dinners. How that has changed! We mark each day by Teri’s hematologic indices, white blood count and their subsets neutrophil count (infection-fighting), platelets (clotting), and red blood cells (oxygen carrying), lab visits, hospital admissions, and transfusions. This week for example during her nadir (valley in her marrow function that follows intensive chemotherapy), her white count has been as low as 100 (1/50th of normal being > 5000), platelets 9,000 (1/15th of normal being > 150,000) and hemoglobin (red cells) 8.6 g/dL (normal > 13). This all leads to fatigue, inability to fight infection – now she takes three antibiotics, one antiviral and one antifungal drug, and inability to clot (no touching knives …).
So this week judging by Teri’s indices, instead of the usual time, temperature and weather, are – white count/neutrophils – very, very low, platelets low – very, very low, red cells – very low, lab visits – 5, doctors visits – 2, admissions – none, transfusions – 5 (Sun, Mon, Tues, Thu, Sun). I keep flushing her double PICC lines with saline (pump method) and heparin daily. So far both ports that travel from her right elbow to just above the heart have lasted 3 months, clogged only once.
Anita (sister) & Henry (brother-in-law) have spent a week, cooking up a storm of favorites – Ann’s dry rub ribs, lions head meatballs, beef with broccoli ... ou jia (deep friend stuff lotus root). This latter was a specialty of Teri’s mother who always made it for me in Califonia or in Columbus. It is a northern dish the is naturally quite time consuming. It requires slicing the cleaned lotus root into very thin cross sections and then stuffing in the seasoned pork that holds it together, dipping it into an egg batter and then deep frying it – preferably outside. Yum! Comforting! Anita and Henry have become Marrow Donor Kits mavens putting together hundreds of packets for upcoming Asian American Donor Program Drives throughout California and the country, and contributing their friends to the efforts. They also search relentlessly on the web and ask good questions of why not. B made basil chicken with wide rice noodles by modifying several recipes, a dish he had at the Noodle Planet in Westwood when Rachel was going to UCLA.
We had a spontaneous dinner with Tony, Martha and Yin who brought half of the Chinese food and included a discussion of strategies to reach out to China. Yin translated Teri’s biography into Chinese and included a small biopgraphy of my father who is still well known and connected in the art history world in China. When she returns to China in the next few weeks, she will approach several of the Opray style hosts on TV.
Jhemon in Los Angeles, cofounder of Asian Pacific American Medical Student Association with B, suggested that we try social media to create more video communication about Teri’s request for Asian donors. We of the elder senior generation said what? Is it blue tube, face spook, fritter … just what is it? I know I am close. That led to further discussions with Catrin who works for the NY Times (through her mother-in-lay Elena in Milwaukee) and a connection to Rob (former videographer, now psych resident) who lent as a FlipCam to do a short but offered to do a more formal edited video. All were supportive to help to create the idea, edit the script and launched this new video direction.
Rob and Andy set up a week night last week to visit and shoot footage on their digital video cameras, proposing to do a professional edited version. We weren’t sure what to expect. Emerging from a compact set of cases, they set up two 500W diffuse lights on a stand, a speaker boom and two digital cameras, straight on and to the side. Over the next three hours, they taped Teri mostly and also B, Anita and Henry individually, and finally, all together.
Teri recorded her 2 min video statement for her Facebook page. It took several tries to get it right and it ends with a sign with the Asian American donor Program aadp.org.
Our friend Audie from Oakland set up a website for Teri named TeamTeri.org and populated it with text and pictures. We were equally happy that her mother Yuri recorded a video statement asking for help for Teri. Yuri is a Japanese-American friend who is a celebrated civil rights activist who lived in Harlem for many years and held Malcolm X’s head after he was shot.
A local channel 4 reporter (NBC affiliate) just called and wanted to do an interview of Teri and her oncologist at the hospital in the next 10 days. This came about from the wife of another patient with AML.
BC (before cancer), we had planned to celebrate my father’s 90th birthday with some of friends, Chinese artists and former art history graduate students. We are taking a window when Teri’s counts should be back to normal and holding it in June. 90 years spanning the Chinese Republic (his childhood surrounded by military and political intrigue as his father was a Guangdong general – 10,000 troops under his command), the Japanese invasion (his college moved from Nanjing to Chengu in the interior out of range of the Japanese bombers), World War II (same displacement), the Communist take over (never got back to his home village since 1936), emigration to the U.S. (1947), unable to return to China (1949) and all cataclysmic changes for the Chinese. Obviously this has affected me as I know of other Chinese contemporaries of my parents who left Iowa City with their parents to return to China at the same time my parents made the decision to stay. How different the course of my life would be if their serendipitous action had led us back to China. In contrast to my father, me, I grew up in bucolic Iowa City.
Rachel & Ben send Mother’s day scarf, jewelry, book and CD, early.
Tomorrow 5/10, we are embarking on the next phase – learning about other alternative donor options and trying to make the best informed decision we can. With Dr. H and Dr. E help we have gathered data, I’ve prepared a comparison grid of risks and survival. We’ve also gathered questions. We are gathering our spirits.
U. Chicago on 5/10 and Johns Hopkins on 5/13.
No comments:
Post a Comment