Found in the Medical Record of an Obese Man

Edwin X 1/15/99
In brief, patient grew up in a large family that his mother's relatives rendered unhappy by the ramifications of "...everyone understood that my mother had married significantly below herself." He repeatedly mentions that he grew up fearing that expectations would be raised that he could not meet. He went to college and became a naval pilot. He did well and married happily but was nevertheless a 2 ppd smoker. His weight maintained at about 200 pounds until he stopped smoking and gained some.

The major event in his life was his wife's breast cancer, cerebral metastases, and her death in home hospice that he carried out for five months and by which he was overwhelmed. Asked of what she died, he tells me that although the death certificate states cerebral metastases, it was "...I believe really from leukoencephalopathy from the radiation." He gained to 300 pounds after her death and became markedly withdrawn and depressed. Sleep disturbance with myoclonic jerks and "restless legs" coincided. Ultimately, he was treated with Klonopin and 40 mg of Prozac, which have helped significantly but partially.

He tells me that on Dec 20 he created "... a big event by giving a party: it was my stepping out after being a recluse; the first time since my wife died (in 1995)." He has been unable to sleep ever since. "I feel if I just had a full stomach I'd be able to sleep, and so I get up and eat."

Patient has strong ties to the Episcopal Church; he is interested in Jungian psychology; and is a thought-full man. He speaks meaningfully of "inner voices." He thwarted my discussion of options in the further treatment of depression, so I asked him to provide me autobiographical writing of his wife's illness and death, to read Jaynes' The Origin of Consciousness, and to return in three weeks. Ultimately, he might be a good candidate for hypnotherapy. Meanwhile, he will accomplish little in the weight program until the underlying problems are resolved.

On Jean's Death (autobiographical writing by Edwin X)
One thing to remember is that Jean was meticulous about her health. Her mother died of cancer, and Jean and I took care of her (with Hospice help) during her final months, and she had a great deal of pain. Jean kept her weight down, monitored her cholesterol, had mammograms as recommended by Kaiser, had her shots kept up to date, her teeth kept in excellent condition, etc, etc, etc. She had a hysterectomy as recommended when numerous fibrous growths were found in her uterus. And she performed routine, thorough self-examinations, during one of which she found a very small lump in her left breast.

She went to the doctor promptly, and a biopsy showed the lump to be malignant--but very small. After careful discussion, reading, and much thought, she opted for a modified radical mastectomy, which was performed promptly. No signs were found of the cancer spreading, and all the lymph nodes were clear. She was put on hormonal therapy and given periodic blood tests.

Something over a year later on, a routine blood test showed a possible increase in tumor activity, and x-rays showed tumors in both lungs. We went to a family reunion in the Midwest with that knowledge, but the doctors said another couple of weeks delay in starting chemotherapy would not matter. The first two types of chemotherapy attempted had no effect on her cancer, and, just after Christmas 1995, she complained of a severe headache, and by the time we got her to the hospital, she was noticeably becoming comatose. She had a 5cm tumor in her brain at the lower rear area. She was given shots to reduce the swelling and was released the next day to proceed directly to radiation therapy. More tumors were found in the back and hip. All except the lung tumors were treated with radiation, and the chemotherapy was shifted to Taxol.

She recovered dramatically, with some weakness in walking and a lot of fatigue, and the monthly x-rays and the blood tests showed a dramatic lowering of cancer activity and all the tumors were shrinking in size. We were exultant. After a couple of months, she began to resume a fair amount of her normal daily activities.

But in the summer, she began to lose some mental keenness. It was generally not noticeable, but if I asked her a question with an "or" in it, she had trouble. If asked, "Do you want pineapple juice?" she would promptly answer yes or no; and answer just as quickly if asked, "Do you want orange juice?" But when asked, "Do you want pineapple juice or orange juice?" there would be this very long pause before I got an answer, and, more and more often, there was this puzzled look as if I had suddenly started speaking a strange language. And she began to walk with a kind of shuffle. We went in for another Taxol treatment and after observing her leg weakness, the oncologist delayed the next treatment for a couple of weeks.

She went downhill very rapidly. She had more and more trouble walking and had trouble getting to the toilet in time before her bladder emptied. Within a few days, she could not walk without help. Calls to the oncologist did not create any apparent concern on his part, and it reached the point where Jean could not walk at all and was demonstrating more and more confusion.

To me, as frightening as anything else was her continued good cheer and total unconcern with her condition except that she hated soiling herself. When I demanded that the oncologist see her, he refused and suggested Hospice. This made no sense to me since at her last visit, he had been all good cheer and hopefulness. He got shouted at and finally agreed to see her if I would bring her in. When I pointed out that I didn't think I could carry her, I was pretty much told that was my problem. The shouting got fairly nasty, and he finally ordered an ambulance and had her admitted to the emergency room. Didn't want to admit her himself.

In the emergency room, the doctor asked Jean why she was there. She smiled her most charming smile at him and said, "I don't know"--and turning to me she asked with great curiosity, "Why am I here?" And now I'm crying as I write this.

Well, she didn't know what year it was, or who was President, etc, and I pointed out that her feet were arched with the toes pointed down. Eventually, she was admitted for a neurology and oncology consult. The oncologist wanted her out of the hospital, but since the x-rays showed her brain tumor had shrunken greatly and her other tumors had shrunk as well, he had some difficulty in explaining that her mental difficulties were the result of cancer activity in her brain. He did keep saying that she was not--in his opinion--treatable. But a request for a diagnosis produced long silences. And without a diagnosis, how does one say she is not treatable? Enter the neurologist, a large man who reminded me of Major Winchester on M.A.S.H., with all the pomposity and none of the charm. Eventually, after spinal taps, MRI, a CAT scan, and various blood tests, we got a diagnosis: Leukoencephalopathy, but I don't guarantee the spelling. Exactly what that was or what her prognosis was (except incurably fatal) was not made clear. What was made clear was that now that they had a diagnosis, she had to leave the hospital. A certain amount of screaming got me an extra day, and we (two of my daughters, actually) turned our living room into a sick room with frantic haste.

And so she came home to die. Her mental deterioration grew markedly from day to day, and it was very difficult to hold any kind of conversation with her. For a few days, she could feed herself with some help, but she could not move her legs. To prevent bedsores, she had to be turned from side to side every two hours during the day and every four hours at night. She had to wear disposable diapers and was incontinent. She had to be bathed and shampooed and lotioned and powdered and massaged, and three times a day get some stretching to prevent her joints from stiffening. She had to have her teeth brushed and flossed, and for some weeks, we put on a little makeup. Personally, I thought of her disease as a sort of combination of Lou Gehrig's disease and Alzheimer's.

I was not totally incapable of taking care of her by myself, but I would have collapsed within a week and resident daughter within two. Jean received superb care because of her daughters, my siblings, our church, and friends. For months, I had one brother and wife or another staying with us; every weekend, my sister and her husband came down from Corona; every weekend, one or more daughters arrived, and the church not only provided spiritual support but lots of visitors for Jean (and she greatly enjoyed visitors even when she couldn't talk to them). For months, we never had to cook a dinner, and for months more, did not have to cook on weekends. That was one great blessing. On many, many days, I was more a personnel and logistics manager than a caregiver. And the logistics could be ferocious.

Another great blessing was the lack of pain. She hurt three times that I can recall: she became constipated, and fixing that really hurt; she got a severe case of diaper rash which was cured in about 48 hours, but it was agony to her each time she had to be cleaned; and once while flexing her wrists, I went too far and she yelled. The last great blessing was her mental deterioration, which seemed first to deprive her of any fear or concern about herself.

She came home at the last of June, I think, and we were told she would not live until September, probably. In September, we were told she could not live until Halloween and at Halloween, that she could not live until Thanksgiving, and then, that she could not live until Christmas.

But she had more and more difficulty eating and then could not swallow fluids. Everything had to be thickened or thinned to the right consistency so that she could swallow it, and it became more and more of an ordeal to get her to take fluids.

Eventually, the day arrived when she could not swallow anything. She had not spoken for weeks; she no longer responded to touch or to sound, but her eyes would blink if I waved my hand right in front of her face. We kept talking to her, but we did not know if she heard or, if she heard, whether she understood.

She died December 29, 1996, at the age of 64. She died in the last hours of the night, before morning came. She died with three of her four daughters and me around her, holding her hands and each others, reading the last rites from the Book of Common Prayer. Her daughters washed and dressed her. Her body was cremated as she desired, and her ashes are in Point Loma Cemetery overlooking the Pacific Ocean.

She, who was always so careful with her life, is dead, and I who was always so careless with mine, live on, trying to do something which in my worst nightmares I never imagined I would have to do: build a life without her.