Indian Summer
Monday, August 14, 2006
I went to Unity Center yesterday morning, and it helped me. I was very happy to see Vicki, Bob's Hospice nurse, and to be part of the affirmative spirituality practiced there. It fed me, the way Science of Mind fed me--until I got too involved with the structural aspects of the congregation. But I'll bring with me what I learned from that experience--and it fills in for what I miss about Science of Mind. So much of the service and the relationships felt familiar and right to me.
And I'm happy to hear talk about "transitions" and about life as a continual experience through which imperishable spirit moves through corporeal states and non-corporeal states. It makes me feel closer to Bob--and closer to the possibility that I may be able to accept his transition with tranquility. Perhaps even serenity.
On Saturday I was reading in bed, with the kitty curled next to me, and I was facing Bob's side of the bed. The sensory memory washed over me of the hundreds of afternoons when I had read while Bob napped, with a kitty in between. I could imagine him very solidly--but his absence brought me such pain. As I cried from my longing for him, I felt a sensation of calm and of his presence, on his side of the bed, turned to me, with his hand on my waist, and I cried harder for it being only a memory. Then I felt his knees against my knees--and that sensastion was authentically and precisely the way it would feel if he were there--I could feel the denim knees of his jeans against my legs. And I felt that he was comforting me--evoking the physical as much as he could to assure me that he is here, still caring for me, and trying to help me through. My crying calmed as I developed the sensation of Bob lying next to me, pulling details from memory--smell and sound and breath and feel--and the "realer" I made it, the more I was comforted.
As Dr. He said, "Bob is here." ¶ 12:55 PM 0 comments
And I'm happy to hear talk about "transitions" and about life as a continual experience through which imperishable spirit moves through corporeal states and non-corporeal states. It makes me feel closer to Bob--and closer to the possibility that I may be able to accept his transition with tranquility. Perhaps even serenity.
On Saturday I was reading in bed, with the kitty curled next to me, and I was facing Bob's side of the bed. The sensory memory washed over me of the hundreds of afternoons when I had read while Bob napped, with a kitty in between. I could imagine him very solidly--but his absence brought me such pain. As I cried from my longing for him, I felt a sensation of calm and of his presence, on his side of the bed, turned to me, with his hand on my waist, and I cried harder for it being only a memory. Then I felt his knees against my knees--and that sensastion was authentically and precisely the way it would feel if he were there--I could feel the denim knees of his jeans against my legs. And I felt that he was comforting me--evoking the physical as much as he could to assure me that he is here, still caring for me, and trying to help me through. My crying calmed as I developed the sensation of Bob lying next to me, pulling details from memory--smell and sound and breath and feel--and the "realer" I made it, the more I was comforted.
As Dr. He said, "Bob is here." ¶ 12:55 PM 0 comments
Friday, August 11, 2006
I have had the feeling that Bob "gave up" when his disabilities got to be too much for him. But I feel disloyal for thinking that, since he was such a fighter--he kept his spirits up until the pain got bad last fall--and even then, he tried so hard to keep going. I guess what I'm saying is that I feel resentment that he "gave up"--that is, that he died--and yet I can't imagine that I would have fought for so long against so many limitations. I think it's my grief that holds this against him--some resentment that I've been abandoned. It's not the first time I've noticed that a part of me interprets the loss as abandonment--and I think that's common with grief. It's really odd that I find so many ways to fault myself for the grieving process, which is probably very "natural"--the way that vomiting is a natural way to rid the body of something harmful or distracting.
I have one of his hats and a kerchief that he wore that have his smell on them. I can catch a whiff of his scent and it takes me back. And in the days after my first therapy appointment on July 21, I had strong memories of him being beside me. A couple of weeks ago it fooled me completely because I had drifted off to sleep in my chair, which is right beside his chair. I had left a magazine in his chair and the cat jumped up on it and settled down. The rustling of the magazine awoke me and I woke to the idea that Bob had turned the page on his magazine. I thought for a second that these past months had been a horrible dream, but even as I opened my eyes I knew that it hadn't been a dream--that he had actually died. Still, I had to look at his chair to be sure that he wasn't there. And I had a couple of other times in the those days when I thought I heard him in another room--and it was the cat--or thought he was lying beside me on the bed. I guess it's a phase of the greiving process that I'm moving into. In general, I like these strong memories, although I was very sad when I thought he was sitting beside me. I think the therapy has ushered in a new wave of sadness, and it's good to go through the sadness--it has to be the way to healing. ¶ 8:09 AM 0 comments
I have one of his hats and a kerchief that he wore that have his smell on them. I can catch a whiff of his scent and it takes me back. And in the days after my first therapy appointment on July 21, I had strong memories of him being beside me. A couple of weeks ago it fooled me completely because I had drifted off to sleep in my chair, which is right beside his chair. I had left a magazine in his chair and the cat jumped up on it and settled down. The rustling of the magazine awoke me and I woke to the idea that Bob had turned the page on his magazine. I thought for a second that these past months had been a horrible dream, but even as I opened my eyes I knew that it hadn't been a dream--that he had actually died. Still, I had to look at his chair to be sure that he wasn't there. And I had a couple of other times in the those days when I thought I heard him in another room--and it was the cat--or thought he was lying beside me on the bed. I guess it's a phase of the greiving process that I'm moving into. In general, I like these strong memories, although I was very sad when I thought he was sitting beside me. I think the therapy has ushered in a new wave of sadness, and it's good to go through the sadness--it has to be the way to healing. ¶ 8:09 AM 0 comments
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 0 comments
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 0 comments
Wednesday, August 09, 2006
Today is Wednesday, August 9, 2006. It has been 20 weeks and 3 days since Bob died. And it seems like the pain is worse. I can look back at the first couple of weeks and see that I was in shock. I was sad and I cried a lot, but the sadness had to do with his dying, with his loss of strength and thought, with my loss, with the ending of our marriage, with the briefness of that sweet Indian Summer. Now I hurt from the pain of missing him, and I cry because the enormity of "forever" is slowly seeping into my consciousness. When I try to wrap my brain around the idea that he is gone forever, my heart tears apart, and I'm afraid that I can't survive it. And I'm afraid that I will survive it, but I will never heal. Or that I will heal, but I don't know who I'll be.
I thought I would be better by now, that the grieving would have brought me some comfort and that the healing would have begun. But I've been overly optimistic. The grieving process is still early--shock has carried me this far--shock and the caring companionship of my friends and family who have filled my summer with visits and activities. Now it's nearly time for school to start, and just as always, that means less time for social contacts. Now I see how much I depended on Bob for my easy companionship--someone to speak with and to share with, but who would leave me to my work when I needed to work. I miss the wordless companionship--so easily meshed, so easily understood. What a horrible loss.
I just don't see much purpose in the rest of my life. I've always been such an optimist, always believed that everything works out for the ultimate benefit. But this just doesn't seem to hold any promise of gain. I suppose I'll get better and I'll give back, perhaps volunteer for Hospice Austin, and, as I've always known, teaching writing is good and necessary work. But I can't say that I'm looking forward to anything in the future. And this is a side of me that I have only known for certain periods--Baby Jessica in the well--not for such a prolonged and unrelieved period. I've always had Bob to haul me out of the well--maybe that's overstating it--but I counted on him to be there when I hauled myself out. He was my cheerleader, urging me to face the work to be done and stay at it. How I miss him. I can imagine him--but I want his physical self. Here. Now.
I feel like a small child, crying that I don't like it this way. Complaining that this isn't what I signed on for. And feeling like nothing will ever change--life will always feel just like this. I hope it doesn't. The adult part of me knows that the only constant is change, and that means that I will change. I will learn a new me, a new normal. I just don't want it. I am not resigned and I do not approve. ¶ 12:17 PM 0 comments
I thought I would be better by now, that the grieving would have brought me some comfort and that the healing would have begun. But I've been overly optimistic. The grieving process is still early--shock has carried me this far--shock and the caring companionship of my friends and family who have filled my summer with visits and activities. Now it's nearly time for school to start, and just as always, that means less time for social contacts. Now I see how much I depended on Bob for my easy companionship--someone to speak with and to share with, but who would leave me to my work when I needed to work. I miss the wordless companionship--so easily meshed, so easily understood. What a horrible loss.
I just don't see much purpose in the rest of my life. I've always been such an optimist, always believed that everything works out for the ultimate benefit. But this just doesn't seem to hold any promise of gain. I suppose I'll get better and I'll give back, perhaps volunteer for Hospice Austin, and, as I've always known, teaching writing is good and necessary work. But I can't say that I'm looking forward to anything in the future. And this is a side of me that I have only known for certain periods--Baby Jessica in the well--not for such a prolonged and unrelieved period. I've always had Bob to haul me out of the well--maybe that's overstating it--but I counted on him to be there when I hauled myself out. He was my cheerleader, urging me to face the work to be done and stay at it. How I miss him. I can imagine him--but I want his physical self. Here. Now.
I feel like a small child, crying that I don't like it this way. Complaining that this isn't what I signed on for. And feeling like nothing will ever change--life will always feel just like this. I hope it doesn't. The adult part of me knows that the only constant is change, and that means that I will change. I will learn a new me, a new normal. I just don't want it. I am not resigned and I do not approve. ¶ 12:17 PM 0 comments
