The trip was an extraordinary experience - not always easy or enjoyable - but remarkable. February, as I knew, isn't a particularly good time to visit. Cold, cloudy weather added to the air pollution was a constant downer. We didn't see the sun and clear air until (believe it or not) Beijing - which was a delightful surprise. But what it lacked as a relaxing vacation, was more than replaced by exposure to a fascinating culture and people with more similarities than differences. There were plenty of differences though, some of them pretty annoying. Still, my mind went from "I'm not coming back here"; to "if I come back I'll . . ." ; to "when I come back I want to . . ." It was terrific to spend that kind of time and have those experiences with Jon. He's pretty conversational in Mandarin and it solved an endless number of problems. I thought of Susan a lot - mostly about how she would never have done this trip in this way! Maybe we'd have done a more comfortable, english-speaking tour - but never like Jon and I did it. However, she'd have gone nuts with the shopping opportunities!
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Jon, Rob, Patrick
By the way . . .
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Barbara's Memory Quilt
About Us
- Rob
- The Moodys have been taking the cancer journey. Susan was diagnosed with Stage II Melanoma in March of 2003 and Stage IV with lung metastasis in 2004. After a year of clinical trials, she changed oncologists and stopped treatments. She lived with this cancer for 5-1/2 years, far exceeding the usual life expectancy. She completed her life under in-home hospice care. The Moody family has found the journey to be an extraordinary experience, filled with both the obvious disappointments, but also significant blessings. In particular, it has taught us what is and isn't important in life. We all have a new perspective on the phrase "don't sweat the small stuff".
Good books to check out
- Healing After Loss: Daily Meditations For Working Through Grief by Martha Whitmore Hickman
- The Anatomy of Hope: How People Prevail in the Face of Illness by Jerome Groopman
- Learning to Fall: The Blessings of an Imperfect Life by Philip Simmons
- Cancer Etiquette: What to Say, What to Do, When Someone you Know or Love Has Cancer by Rosanne Kalick
- Dying Well: Peace and Possibilities at the End of Life by Ira Byock, M.D.
Important Links in our Journey
A Little History
The original lesion was on the left side of Susan's face. It was not healing, so she made an appointment to see a dermatologist. It took a long time to get in, the lesion was biopsied, and to everyone's surprise, turned out to be positive for melanoma. The surgery to remove the lesion was successful, but failed to find a "sentinel node". Therefore, it was impossible to know at that point if the melanoma cells in the lesion had gotten in to the lymph system. We had to wait it out.
In March of 2004, a growing lymph node in her neck proved to be malignant. Further tests showed that it had also metastasized to her lungs. Her melanoma was then at Stage IV, with "lung mets".
Melanoma has no proven cure or effective treatment protocol. She underwent a number of clinical trials as a research subject. Up until the fall of 2004, nothing was working and she underwent "bio-chemotherapy", a highly toxic blast of 5 chemical agents administered while an inpatient in the hospital. It was an attempt to stop the melanoma cells from their rapid growth. It was a brutal experience for her and for the rest of us. This was an important touchstone in the journey. For the first time, she realized that her quality of life was much more important than its duration. She chose not to do the remainder of the prescribed series. Meanwhile, another clinical trial opened up and she went on that for several months. After a number of accumulating side effects, she decided to find another oncologist and opted for palliative care. The aggressive lymph node in her neck had to come out and then she had to undergo several rounds of radiation. Finally rid of the aggressiveness of the clinical trials, she got back to a higher quality of life, different from before, but satisfying none-the-less. She had already given up graduate school and career, lost some taste and salivary abilities, and suffered from "chemo-brain". But our mantra became "quality of life vs. quantity of life" and she remained relatively healthy for 3 more years. The remaining tumors in her lungs only grew marginally. We did some traveling and focused on doing things that we would otherwise have waited to do.
In February 2008, at what had become a routine visit with the oncologist, she reported having had some balance issues. A brain MRI revealed a tumor and we all knew that we had entered a new chapter in this saga. Melanoma is notorious for lying low like this and then eventually re-emerging in another place -- often the liver or the brain.
She underwent "Gamma Knife" surgery -- a non-invasive, highly focused radiation treatment designed to disable the tumor and buy more time. It was said to be a benign, palliative procedure, but the after effects were uncomfortable for her and involved headaches that wouldn't go away. An unfortunate steroid treatment, a couple of ER visits, more scans that revealed brain swelling and tumor growth, and a reality visit with the oncologist helped her decide that it was time to enter the hospice program and make the end of her life the best that it could possibly be.
In March of 2004, a growing lymph node in her neck proved to be malignant. Further tests showed that it had also metastasized to her lungs. Her melanoma was then at Stage IV, with "lung mets".
Melanoma has no proven cure or effective treatment protocol. She underwent a number of clinical trials as a research subject. Up until the fall of 2004, nothing was working and she underwent "bio-chemotherapy", a highly toxic blast of 5 chemical agents administered while an inpatient in the hospital. It was an attempt to stop the melanoma cells from their rapid growth. It was a brutal experience for her and for the rest of us. This was an important touchstone in the journey. For the first time, she realized that her quality of life was much more important than its duration. She chose not to do the remainder of the prescribed series. Meanwhile, another clinical trial opened up and she went on that for several months. After a number of accumulating side effects, she decided to find another oncologist and opted for palliative care. The aggressive lymph node in her neck had to come out and then she had to undergo several rounds of radiation. Finally rid of the aggressiveness of the clinical trials, she got back to a higher quality of life, different from before, but satisfying none-the-less. She had already given up graduate school and career, lost some taste and salivary abilities, and suffered from "chemo-brain". But our mantra became "quality of life vs. quantity of life" and she remained relatively healthy for 3 more years. The remaining tumors in her lungs only grew marginally. We did some traveling and focused on doing things that we would otherwise have waited to do.
In February 2008, at what had become a routine visit with the oncologist, she reported having had some balance issues. A brain MRI revealed a tumor and we all knew that we had entered a new chapter in this saga. Melanoma is notorious for lying low like this and then eventually re-emerging in another place -- often the liver or the brain.
She underwent "Gamma Knife" surgery -- a non-invasive, highly focused radiation treatment designed to disable the tumor and buy more time. It was said to be a benign, palliative procedure, but the after effects were uncomfortable for her and involved headaches that wouldn't go away. An unfortunate steroid treatment, a couple of ER visits, more scans that revealed brain swelling and tumor growth, and a reality visit with the oncologist helped her decide that it was time to enter the hospice program and make the end of her life the best that it could possibly be.
