Thursday, August 10, 2006
Bob had advanced adenoid cystic carcinoma. He was diagnosed with ACC in his right parotid in 1996 at the age of 50. It had already invaded the facial nerve. He had parotid removal and nine weeks of radiation. In 2000, new disease was found at the skull base, in the cavernous sinus and along the trigeminal nerve. At that time he was referred to M.D. Anderson in Houston. The MDA doctors did not recommend surgery because of the location and because of the poor prognosis, given the perineural spread--essentially they said "it doesn't get much worse than this." They did prescribe two rounds of chemotherapy, but to no effect, nor did anyone really expect any effect. He decided then against anymore such "comfort" treatments. In 2004 he was diagnosed with lung mets, and he was given Iressa, an oral chemotherapy with minor side effects, but the disease continued to progress. The disease invaded his brain, in particular the brain stem.
Along the way, the cancer chipped away at him--loss of sensation on the right side of his face, starting with numbness on his lip (2000) and progressing up past his forehead (2004); loss of eye muscle control on the right (in 2004) and, at the end, on the left (2006); paralysis on the right side of his face (2004) resulting in the suturing of the left eye lids to compensate for lack of blinking and to prevent the double vision resulting from the loss of eye movement; loss of the sense of smell (2005); and, in his last weeks, a declining sense of taste.
On the other hand, he worked full-time until the fall of 2005, running his own business, dealing with customers, and being very active in the heart of his family. He dealt with this disease with great dignity and grace. His daily mantra was "Something wonderful will happen today." It's a wonderful self-fulfilling prophesy, because all you have to do is look for it and you find that wonderful something. Even his hospice workers seemed to find peace and comfort around him.
Bob considered himself lucky. He was radiated, as a toddler, for enlarged adenoids in the late 1940s before scientists fully understood the dangers of medical radiation. He had mixed-cell cancer in the left parotid at age 7. Doctors performed a radical resection then, and that seemed to have dispensed with the disease on that side. He had no other cancers until he turned 50, so he proclaimed himself a very lucky man. But he always felt he would die of cancer, and that he wouldn't live to be an old man.
In August 2005, Bob was discharged from MDA because they had nothing more to offer. He consulted a local cancer doctor, looking for someone to monitor the end stage of the disease, and was offered the opportunity for chemotherapy. He declined the chemo, feeling that the doctor was offering false hope--and perhaps looking for cha-ching--and chose instead to enjoy the quality of the time he had left. And we felt if MDA had nothing to offer, the local cancer treatment center was probably not offering anything with a worthwhile expectation of success.
I really enjoyed Alice Neely's perspective on the loneliness of this disease. It's so true. People don't understand the "indolent but relentless" nature of this cancer--people confuse the indolent path with "remission." As Alice Neely points out, the slow progress makes this a "good cancer," but that's a very ironic benefit. Bob said that the good thing about dying slowing is that it allows you to die with grace.
We married in high school, in 1966, and we had a strong partnership in this life. What we realized in 2000 when the doctors at MDA presented us with the prognosis of doom--no treatment, no cure--is that we needed to live in the present--the here and now--and that's what we endeavored to do. And we found that joy is abundant in the present. I'm having trouble with that now. ¶ 3:27 PM
Along the way, the cancer chipped away at him--loss of sensation on the right side of his face, starting with numbness on his lip (2000) and progressing up past his forehead (2004); loss of eye muscle control on the right (in 2004) and, at the end, on the left (2006); paralysis on the right side of his face (2004) resulting in the suturing of the left eye lids to compensate for lack of blinking and to prevent the double vision resulting from the loss of eye movement; loss of the sense of smell (2005); and, in his last weeks, a declining sense of taste.
On the other hand, he worked full-time until the fall of 2005, running his own business, dealing with customers, and being very active in the heart of his family. He dealt with this disease with great dignity and grace. His daily mantra was "Something wonderful will happen today." It's a wonderful self-fulfilling prophesy, because all you have to do is look for it and you find that wonderful something. Even his hospice workers seemed to find peace and comfort around him.
Bob considered himself lucky. He was radiated, as a toddler, for enlarged adenoids in the late 1940s before scientists fully understood the dangers of medical radiation. He had mixed-cell cancer in the left parotid at age 7. Doctors performed a radical resection then, and that seemed to have dispensed with the disease on that side. He had no other cancers until he turned 50, so he proclaimed himself a very lucky man. But he always felt he would die of cancer, and that he wouldn't live to be an old man.
In August 2005, Bob was discharged from MDA because they had nothing more to offer. He consulted a local cancer doctor, looking for someone to monitor the end stage of the disease, and was offered the opportunity for chemotherapy. He declined the chemo, feeling that the doctor was offering false hope--and perhaps looking for cha-ching--and chose instead to enjoy the quality of the time he had left. And we felt if MDA had nothing to offer, the local cancer treatment center was probably not offering anything with a worthwhile expectation of success.
I really enjoyed Alice Neely's perspective on the loneliness of this disease. It's so true. People don't understand the "indolent but relentless" nature of this cancer--people confuse the indolent path with "remission." As Alice Neely points out, the slow progress makes this a "good cancer," but that's a very ironic benefit. Bob said that the good thing about dying slowing is that it allows you to die with grace.
We married in high school, in 1966, and we had a strong partnership in this life. What we realized in 2000 when the doctors at MDA presented us with the prognosis of doom--no treatment, no cure--is that we needed to live in the present--the here and now--and that's what we endeavored to do. And we found that joy is abundant in the present. I'm having trouble with that now. ¶ 3:27 PM
