An average day
Teri spent most of the day at the Day Hospital with sister Terri having blood drawn, being seen in Wound Clinic and having platelets transfused. Since her last dressing change was so painful, she took Dilaudid (narcotic) and had topical lidocaine applied before the nurse cleaned and dressed the five open blisters like burns and covered them in three additional (pressure) layers. Her leg swelling has improved and the blistered areas are healing after two days of this!
Terri sister returns to CA tomorrow and has been a great help. Grace niece came from CA this afternoon, thus preserving the Wisconsin-to-California Teri Midwest-West side village balance.
Rachel, Jack and Grandpa
Jack has lit up the house. He has an knowing smile that says ‘I know what’s up– I’m on the inside’. He squeals as he watches the boats go past. He watches you intently. He laughs and guffaws so easily. Great granpa Li is completely enthralled with Jack, and said as he watched him tool around in his diapers, ‘Jack and I wear the same underpants!” Lest you think he has gone daffy, yesterday Great grandpa Li was sent galley proofs of a chapter to be published that he had written on a Yuan dynasty painting. Can you imagine publishing original material at age 91 … when most of us if alive will be lame brained?
Rachel is a fitness buff, although retired from her Ironwoman events. How you learn from your kids, she has challenged me athletically. She has outfitted me in light weight running and biking gear. She has taught me different weight lifting routines that I use consistently. She got me to try a spinning class with her and John which helped preserve my summer biking legs over the winter. She had me run with her yesterday, pushing Jack in his jet streamlined jogger. I realize I enjoy it when the kids push me along … eventually in my own stroller!
Teri's epiphany
Teri says that she had her third epiphany of this exhausting illness. She said that last night she was struck by the sudden realization that she will be cancer-free. That she just has to jump over these many low hurdles. But it will be. She believes it.
Why the blog?
Some of you have asked me directly, why did I write this blog? It is very simple. When I first learned of Teri’s diagnosis of AML and the dismal long term prognosis, I knew that our time together was likely to be shortened. My dream that we could age gracefully and enjoy sunsets together was shattered. I therefore vowed that I would record as best I could our time together in order to preserve Teri indelibly in my words, in my memory... Thank you for sharing this journal, even as painful a journey as it has been to date.
Write a book?
In the past two weeks, about seven people have asked me to consider writing a book on “our harrowing journey to the center of her marrow, and back”. This includes friends, colleagues and Dr. H. our primary oncologist/BMT physician.
I had thought about this fleetingly given the highs, lows, twists and turns of a fight with cancer that has turned our world completely upside down. The shock and awe diagnosis. The failed world wide search for a matched donor. The joy of first remission. The shock of relapse. The near death from a superbug infection. Resuscitation by autologous transplant. The soul searching. The insurance abandonment. The successful transplant but with myriad complications.
Ben asks the tough question. What would the main point of the book be? How would it differ from all the cancer survivor books on the market?
What do you think? Do you have any suggestions?
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