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Lee was diagnosed with pancreatic cancer on November 12, 1997. She was 49 years old at the time. My role was as friend and support and later also as advocate and primary caregiver. She had been severely jaundiced for about a month and went to the doctor with abdominal pain and nausea. She had a bilirubin count of about 15. A catscan showed a 3cm mass on the head of the pancreas. She underwent ERCP with biliary stent placement on Nov. 4. The stent was replaced with a larger one Nov. 6 because of trouble with the first one. They had performed a biopsy during the ERCP but either hadn’t told her or she missed that information; on Nov. 12 she got a phone call telling her she had pc. The cancer had already spread to her liver (one spot) and lymph nodes. A bypass was performed on Nov. 17. Lee recovered from the surgery remarkably fast. She consulted an oncologist and was told Gemzar was an option if her bilirubin dropped low enough; and that at most she could expect to live “maybe a year”. Her oncologist was willing to try anything Lee felt would help. Lee went to Mayo in January for a second opinion but they only confirmed what she had already been told. Lee had a Ph.D. in physical chemistry and was a medical researcher by profession and spent many hours researching her own cancer in the medical journals. She opted against chemo because she wasn’t convinced that it would help and was leery of the side effects. She was a hard-core scientist but decided her best option at that point was to try macrobiotics and began cleaning out her kitchen and buying foods for the macrobiotic diet. It was about this time - late January or so - that she began having trouble eating. Macrobiotics took a back seat to being able to eat anything at all that wouldn’t cause her pain. She eventually learned what foods worked and also found that eating very small meals and limiting fluid volume helped a lot. In February Lee accepted a position at Purdue in a research lab. I should mention that throughout all of this her biggest desire and determination was to live as normally as possible. At times she talked as if she didn’t even have cancer and I struggled for a long time with what seemed like a massive dose of “denial” on her part; but I managed to keep my mouth shut and realized that it was Lee’s life, Lee’s cancer, and Lee’s decision on how to deal with it all, and I couldn’t begin to imagine what she was going through and had no business telling her what decisions she should be making. I would provide her with information on anything she wanted (that’s how I found the chat room) but respected her decisions on how to deal with the information. She often told me that she was chosing to focus on “living and healing”. I think the very biggest reason Lee lived as long as she did as well as she did was simply her attitude. I can’t emphasize that enough… Her apartment was filled with books and tapes on cancer survivors and what the “survivor” personality was, and a huge piece of that was refusal to give up. I watched Lee very slowly decline over the next several months. In June she decided she had to quit her job so that she could concentrate on getting her energy back (she was exhausted most of the time) so she could do things she wanted to do. In July she began a rapid decline but throughout all of it was still determined that she could get better. She talked to me at length about her realization that she could live with pain - and still do the things she wanted to do, just with some adjustments. This somehow gave her renewed hope that she could still live a long time. At the end of July she had another catscan (the first since January; she opted for no testing any sooner) and the catscan showed the pc was apparently about the same but that her liver was full of (50-70) tumors; there were also numerous spots on her lungs. In early August Lee was admitted to the hospital with an undiagnosed infection. Before she left the hospital she had a pic line put into her arm so she could continue on IV antibiotics at home. In late August she was readmitted to the hospital with high fever. She had a drain put in so her ascites could be drained on a regular basis (started becoming a problem in mid-August). She also ended up having a drain put in her liver because her bile duct (stent) was blocked and her bilirubin was climbing again. By early September it was clear she couldn’t go home and she was admitted to the hospice unit at a local hospital, with the understanding that it would be okay if she got better and wanted to go home. Her energy continued to decrease and her pain increased but was for the most part controlled (demoral, then increasing doses of morphine) but was also obvious almost to the end. She had no nutrition or hydration for about the last month of her life, per her wishes. She slipped in and out of consciousness and then eventually into a coma; after about 2 more weeks, one morning her breathing stopped and then her heart and my dear sweet friend moved on to another place. Louisa Lee France, January 23, 1948-October 19, 1998, angel and warrior on earth; scientist and accomplished musician; gentle soul and lover of animals; sprite and fighter: I look for her in the stars she loved so much and pray she is at peace.

Posted 11/10/1998 01:15 pm by cc (Carol C. for Lee)
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