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Archive for August, 2013

ClarissaPussycatonmydesksmaller
Clary Pussycat — taken by Caroline — just behind my computer, now a favorite spot for this cat in my room

The surgical team was now ‘fairly confident’ that Quintana would ‘leave the table,’ although they could not predict in what condition.
   I remember realizing that this was meant as an improved assessment: the previous report from the operating room had been the team was ‘not at all sure she would leave the table.’
   I remember trying and failing to understand the phrase ‘leave the table.’ Did they mean alive? … Whatever happens, I remember thinking, she will without question ‘leave the table.’ — Didion, A Year of Magical Thinking

Dear friends and readers,

Today an intervention radiologist (the term for this skill) placed what is called a port (mediport) into the Admiral’s upper chest. It’s a device which is attached to a catheter which runs into a large vein; placed underneath his skin, it allows medical personnel to inject chemotherapy, medicine, blood, nutrients, other liquid substances directly into his veins (body). It spares the poor patient these painful IV which the chemotherapy can burn. The procedure required anesthesia, and there are some dangers involved. Last week (August 23rd) the people refused to do the procedure because (due to their mistakes) his blood had become too thin. We have discontinued (forever we said) all blood-thinners so his blood was in a normal range today. The hope of course is the chemotherapy he is to have on Friday (a first of what I take will be two sessions close together) will shrink the cancer.

Dr Pereira described our reason for doing it as “taking a shot.” From all I’ve read of chemotherapy it’s very much a double-edged sword. It really helps some people but it seems these are often people in better shape, whose cancer has not progressed and weakened them so swiftly. OTOH, some people have a serious reaction against it. Others it’s a wash, some help but not enough as it kills regular as well as cancer cells. And it sickens people; they suffer from nausea from it and I don’t know he can stand any more of hat.

I wish I felt more hope over what this could bring: more time to live, better quality of life as the miseries of the cancer recede if it grows smaller, but as he continues unable to eat and takes in so little and grows weaker each day, I fear the immediate effect will be worse than the good it may do. We have had several struggles over the past few days and after our new nurse (we have a better one at last, Hill is his name but he comes only once a week) told the Admiral what will happen over the next week or two if he continues non-eating, he did begin to ingest (swallow or drink) glasses of milk, or say 3/4s of a glass of the supplements (Boost, Encore Plus, a dark chocolate, a strawberry), gatorade, every couple of hours. But this did not last beyond one day. He would rather eat real food, but when he tries, he takes one mouthful and can do no more he says. He got very upset over the demand he eat tonight. He just can’t. He says he feels better when he doesn’t eat and Hill told me whatever he ingests 90% of it goes to feed the cancer.

Nonetheless, he has had two relatively better days where he sat up for a while and we actually went out using the folding wheelchair the Hospice people gave us. The weather has been beautiful (until today when it grew hot again) and I pushed the chair round the block, and we were both cheered by this. However, both times he was exhausted by it, and after the first he needed to use of oxygen tank for the first time in a while. Most days he is in bed and will sleep or doze as much as 20 hours a day. He can’t read my blogs anymore. He is now in his right mind and reads brief email occasionally, can listen to good music, discuss what is to come and remembers many details of things I do need to know about finances, websites, the house. Once in a while he will make a joke; it’s usually soft and no one but me hears or gets his irony. He was so cheered by this and since the chair given us by the Hospice is small, with small wheels, really meant for traveling in a car, he looked at sites with better chairs and asked me to buy a stronger bigger one he could be more comfortable in, with a large wheel he could turn, and I just didn’t have the heart not to spend the money. That day was one of his better ones and I thought of the beautiful fall and maybe a month’s worth of such strolls. Now I think we won’t get them and how shall I get this fine wheelchair up into the attic?

Need I say I am finding the strain of watching this, of accepting it, too much at times, especially in the medical facilities where I am expected to behave as if all is apparently well, if not to smile, as least keep a decorum of calm acceptance. I can’t. I lose my grip on my patience. I grew wild with worry today when I was told the nurse was able to call me in because the procedure was over and a full half-hour went by. I broke through the code of behavior and just went back there to see what was what. Someone tried to stop me by telling me there was no room for me; I said I would take up hardly any space. When I’m obviously upset, the medical people will ask if, as if surprised that I should be unhappy, “Why what’s wrong?” I really am in scenes from Wit.

I’ve talked to yet more people who have been caregivers and dealt intimately stage-by-stage with someone who has cancer, and it does seem that the decision to do surgery first and then chemotherapy can work out better or as well as vice versa. Someone said her husband wanted the surgery first lest the chemotherapy have such bad side effects, it would put off the operation for too long and then the primary tumor not come out. Others tell of just surgery and then the cancer not spreading, no chemotherapy or radiation (this seems to be rare). It was pointed out to me the surgery was not irrelevant as even if it had nothing to do with preventing, stopping or curing the cancer, it did remove the big first tumor and fast and its biopsy certainly produced an accurate staging at last.

Desperate for some hope I emailed a friend who had originally recommended a doctor in Boston who was said never to do this awful operation and just do huge amounts of chemotherapy to destroy esophageal cancer cells; he recommended calling Sloane-Kettering, and his friend showed me where on the Sloane-Kettering site there are three new procedures not mentioned by anyone in Kaiser or the doctor outside Kaiser here in Virginia to whom we went to for a second opinion. These directly attack the cancer cells in the liver and can be used for patients where both sides of the liver are compromised: image-guided therapies targeted directly to the liver while sparing healthy liver tissue; thematic ablation (heat or cold used to destroy liver metastases); and liver resections (major surgery).

I did phone a general number but didn’t get much information or got misinformation like people outside the NY metropolitan area cannot use this hospital or its doctors. I am aware it must be crowded with people who want to come to a place said to be the best in the US (maybe the world) who save people not saved elsewhere. Another friend then gave me the name and number of a specific doctor specializing in esophageal cancer; she meant me to call his phone directly but I used the number called “new appointments” and got a nurse who said that the doctor my friend recommended does take out-of-town patients, but only if he’s not under someone else’s care — they won’t interrupt someone else’s protocol as that’s dangerous. So say after a first round of chemo if we are unhappy with what’s not planned for next or is, we could call then. And then we’d send the records through our Kaiser HMO (that can be done) and get a first appt. If Jim was still alive by then, I’d ask for the most aggressive treatments to prolong life and maybe after that improve quality — the ones I can’t find at Kaiser. Of course (as this nurse said) it might be he’s not a good candidate for them. Another friend suggested how I could try to get a referral from Kaiser or the price would be astronomical without insurance (genuinely prohibitive; we’d run through all our savings and yet not be able to pay it all). At any rate the woman on the phone spent time explaining what I had read and procedures and that was something of an outlet and comfort.

The admiral had been against this calling, and was at first adamant he would not and could not (too weak) go such a distance (including staying at hotels, walking through corridors, streets) for consultations. But Caroline was here and urged me to call anyway and when I had the information he did listen and even read the descriptions of these procedures not on offer as far as we could tell from Kaiser. Most of the time when he gets really stiff and refuses to do something if I go ahead and try to do it, he just refuses to cooperate, really gets angry and the whole effort is useless (I’ve seen others persuade him, but I lack the knack it seems), but perhaps because he’s sick when I did tell him, he listened calmly. Maybe because it is all so iffy — he seemed to accept the idea of a possibility. I agree with him that going there at this point might be beyond him. Of course were the chemo to help, were he to begin to eat ….

We also dreamed of going to the EC/ASECS meeting in Philadelphia this fall — this again during a better moment or phase of a day. I could go for a day and a half myself and still chair the panel I invented (“The Retirement poem”). He’d have to be a lot better than he was today to make it.

I am all anxiety and fears about what is to come — I never do well with the contingent. So I have been trying to anticipate what I will have to do and take over a good deal of what the Admiral used to do (bills for example). Caroline has been a terrific help here, and Yvette’s phlegmatic self keeps us going at night together. I tried to do what people call “the research” over a federal gov’t widow’s pension but ended up just making myself more not less upset. I did find the right forms, the pamphlet you are to read and the procedures but as to understanding the unwritten things one must do and enact (always part of human doings), I found the language on the site often enigmatic and worried about this or that password. The Admiral told me to remember the site is intended to cover everyone, all cases.

I could inveigh against this idea I have become accustomed to in the last few years: people will say “I did the research,” or “do the research” and all will be well or better. I really am still puzzled at what the phrase means. If what is meant is finding a good doctor, or hospitals, all of them online produce glowing reports of themselves, and it’s only by reputation (a school for example) or what types of specialties are described that I can tell which is said to be the better. Atul Gawande has a long essay on the difficulty of understanding what makes for good and effective medical treatment, much less deciding who offers it. I understand academic research: you read all you can find on a topic. So I did read a number of good articles on esophageal cancer in May. Fat lot of good this did me. There’s a difference between information and knowledge. I read about the risks of metastasis but not until I’ve experienced seeing this, did I understand. Often when I try to read about what’s required to do or participate in the human aspects of whatever it is, the whole thing just makes me more anxious and I’m better off not doing “the research.” Even buying cars (where this phrase is most used) seem to me very limited when it comes to any original or different information that you can gather quickly: is it prices people are referring to? You still have to deal with the given salesperson and the atmosphere fostered by the people running the car dealership. Research (informed writing) on these does not exist.

I would like to say the idea is invented to make the people who say they “do the research” feel empowered and is used to blame those whose results are tragic or miserable because they didn’t do these arcane fact-findings. In the case of cancer, it seems those who win (or beat it) have cancers susceptible of treatment everywhere; those who lose have pernicious forms of the disease. Yet I too am seduced by a longing to believe that some conduct of mine or someone else’s can bring about not just a better outcome but one I’d genuinely like — in his case a cure, remission, or just a longer span of life and better quality: which he is not getting at all; he is only more or less free from pain and not nauseous as long as he doesn’t eat. What happens is phrases resonate in my mind out of hindsight: the doctor recommended who it’s said never does the drastic operation, only direct and heavy chemotherapy: were the Admiral’s stomach not so small and so high, he might be able to tolerate food.

Since August 4th, the day after we were told the Admiral’s pain and the reverse of his recovery came from “liver mets,” our lives have been compounded of vexation, desolation, for him at first anger, hostility, despair, now it’s all those still (maybe for him minus the anger and he seems to tired to be hostile), for me anxiety, sometimes a feeling of terror at being alone without him in the world with me to turn to — except maybe quieter. I have not had a happy moment since the afternoon we were told. Nor do I think he has. I think for myself of when he’s gone of part-time jobs — maybe at long last one where I will not be stigmatized as I was for over 30 years. Volunteering to get out of the house. I look at my books and say I’ll return to those most beloved and go through a course of reading them to find what I can hold to to enable myself not just to stay alive but find some contentment again. Dorothy Parker’s famous poem, “Resume,” shows most forms of suicide are painful and difficult — and I’m not the violent type. I want to stay for my daughters, hope still in future years to enjoy sharing their lives. I can’t make myself be what I’m not: I’ll never be interested in cooking food, fixing a house beyond what is minimally needed for my comfort. How shall I spend my daily time?

It becomes (as I say) a continual intense strain, especially when I am near and watching him, helping him, seeing how others react to him, and I begin to crack. How I envy those going back to school, going back to teach, doing all sorts of things that look enjoyable. I feel cut off from these. On the other side of something. Sunday Caroline, Yvette and I did take a walk in Old Town, had lunch at La Madeleine … a two hour respite.

Joan Didion has fun in both her books (I’ve begun Blue Nights which is if possible stronger than The Year of Magical Thinking) through contemplating and parsing, exposing the euphemisms and absurd games with language (such as using blunt opaque abbreviations; vent instead of ventilator) medical personnel play when someone is gravely ill, near death or dying. I can be amused reading her book but not myself distance myself enough to find the way the medical personnel speak food for thought. I saw in the New York Times today where a woman who was diagnosed with Stage 2 breast cancer was worrying lest she become infertile, not be able to have children. She seemed not to realize that the cancer could kill her. And she was told, oh, not to worry, pre- and chemotherapy can enhance fertility. I wish I had found the story hilarious. It was meant seriously.

Why do I natter on about medical personnel? because the only kinds of places the Admiral and I go nowadays are medical facilities. Come to think of it Joan Didion also fills her book with sketches and scenes of the medical establishment and its types. She too surrounded by these people, in her case night and day as she spent weeks and weeks in ICU units. As to these hospice types, they use routines and euphemisms to enable them to keep away; to limit service; their brief is to send medicine, lots of it and leave you to use it. When they send someone, half the time, they are worse than useless, spending their time filling out sheets with information already in the thick file; one fool of a nurse wrote out in large letters “does not believe in God!” — she told me (learingly) that divine intervention had brought her. I told Hill to tell the people at the main office never send her again.

Much better for me is a kind of stalwart calm that the refusal of the medical people at the medical centers to acknowledge what is happening in front of them drives from me. I do better when everyone acts candidly based on what is a perceived reality. Then advice and an assessment that makes sense is music to my ears.

Lines

I want so badly for this
not to have happened
  I cannot undo what
has happened to his body
I want to retrieve
  the irretrievable

Each week he declines more, weaker,
more gaunt, hollow, death-like.

I remember being aware
one day now retired with him
  that he ate so many tums
I had forgotten. I asked him about it.
“Yes it continues just as ever.”
  A flash of worry.

His diverticulitis, writhing with
gripping gut without that medicine.

I don’t get anywhere on my Trollope film paper
just repeating the same rounds of reading
  Hard to break out, get above,
mind is not up to it, clouded
  This part always the hardest

Sylvia

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Not all days have high drama; outwardly today passed quietly. The event that mattered occurred across the day: the Admiral was very poorly after yesterday afternoon’s ordeal at that Kaiser Tysons Corner medical center. A friend on-line told me about “worse the day after” phenomena. A friend of hers for whom these trips out for tests and to doctors were disastrous was able to obtain gov’t paid home visiting nurse services (real ones, who actually take care of the person, not the kind we are getting from Hospice who show twice a week, take blood pressure and temperature from the stranger sitting her, then stay on to fill out forms galore and then leave); she said these services are among those cut whether recently or even not long after instituted hard to say. (It cut into someone’s profit it seems.)

He tried to get up and stay up for a while, but found he couldn’t. He wanted to dress in regular (not athletic pants) and found he can’t any more because while he’s much thinner his waist has swollen so he can’t close the pants with ease. He managed one glass of milk and 3/4s of a glass of boost (a liquid formula containing lots of calories and some proteins after I pressured him into it), and of course water. He does drink water because he’s often parched. his voice is so hoarse I can hardly make out what he says sometimes. He slept on and off most of the day and now this night. I gave him his medicine when he was supposed to have it, helped him walk. He was not in actual pain, but was nauseous now and again. That’s why he can’t eat. Everything tastes bad.

This it is to have cancer in your liver — and many other digestive organs too, or the bone, and other places. The caregiver seems to be someone the society assigns or who assigns him or herself to watch the beloved (if the patient is lucky) person slowly die. Unbearable is what I find it at moments.

I had another visitor from the Hospice people today. Yesterday a kindly social worker who is also a psychologist came and we had an hour’s talk and she managed to allay some of my anxieties. If my computer software doesn’t work I can hire for a year at a time services from a Geek Squad at Best Buy. I’m eligible for grief-counseling from Hospice (support group), I hope for free. Whether it’ll be any use I can’t know. Today a woman who manages the volunteers who can come and stay with the Admiral for a couple of hours at a time if I need or want to go out. Whether I’ll get any services remains to be seen. She looked about the house and was the first person I’ve seen in a long while to at least seem to appreciate what a beautiful home the Admiral and I built for ourselves to share: rich in books we continually journeyed through, our favorite picture on the wall above the mantelpiece (a black-and-white print of an Alma Tadema of a group of later Edwardian figures listening to someone read Aeneid is the conceit), a nymph on a rock on the other side of the room. How will I sit here alone? We had a comfortable chat about ourselves I’d call it for nearly an hour and this did help me through the middle of the day when posting to the Net and most comments are over. (How people imprisoned in solitary confinement stand it – and for as much as 40 years so crazy are the cruel sentences — I can’t imagine.)

Yvette was home at 5:30 and I went for a walk, and around 7 we made ourselves supper: spaghetti with left-over chicken. We listened to marvelous Irish music on her i-pad through a podcast. We talked of what happened to her over her day at work. The people at her office who handle retirement (and widow’s pensions) have offered to spend a half hour or so with me, but they have not yet set up a time. (I saw a lawyer and financial adviser last week for 2 hours.) I can’t say none of this is real; it is all too real. Stark. I feel it starkly.

My mind casts about when I am not working on my one film project, which goes very slowly. I knew I took a chance, bargained with luck when I fell into a relationship with the Admiral where when I lived with him in his way I knew great happiness and a sense of safety and peace with him, real companionship, enjoyment together as we shared tastes, political outlooks, knowledge (books), but that if I should ever lose him I would pay the price of relative isolation (the Net has changed this some) and dependency. I hoped intensely we would die within a few years of one another, and while I knew statistics were against it, since I have a couple of serious complaints, maybe I would die first. I even retired last year when things at GMU were becoming harassing and what a happy year it was. I didn’t realize how much time I really did spend teaching. We did the attic, the bathrooms, flower beds, and just lived our days and nights together. He dreamed of maybe 30 years. He said the statistics allowed for this.

It’s not only not to be, it may be I have 20+ years ahead alone (if I manage). I think I would like to try and live on, with and for Yvette as well as myself, finding pleasures again in books, writing, maybe small trips (I had just had a couple of fledging attempts alone), but there is so much I am unsure of, don’t know how to do. Caroline is helping here, but how frightened I feel.

I am glad I know how to drive, someone invented the GPS and it’s in my car (though it leaves a lot to be desired) and by luck and Admiral and I had gotten me a new one, PriusC, cheap on gas, this past February.

I have listened to the night’s silence for so many nights over the past couple of years — for the past couple of years he has been going to sleep by 9 or 10 at the latest. It’s nearly 1 in the morning now.

The pussycats are asleep in the front room. Early in the evening after supper I fell into a sudden sleep watching DemocracyNow.org and had a realistic dream which upset me very much. I thought as I woke I had to go to the hospital with the Admiral, and rushed about feeling trauma, but when I saw Yvette at her computer watching ice-skating, her TV on at the same time, and went to ask her how shall we do this I gradually realized I had fallen asleep and none of whatever happened in the dream (now a blur and confusion in my mind) had not occurred. What a relief.

I just finished an intelligent film from Netflix: Marlene, a documentary interview of Marlene Dietrich in 1984 by Maximillian Schell whose surface was made up of a collage of her movies, filmed concerts, appearances, photographs, not chronologically but thematically put together. The story of a successful professional star, her personality opaque to herself.

Now I must force myself to go into the back room and sleep in the wide bed next to the Admiral’s reclining one. I know within half an hour the cats will join me.

IaninDeskDrawerinMyWorkroomsmall
Ian in the desk drawer of my workroom last week in the afternoon

One of the people who has commented on this blog recently spoke of her mother left alone after a life with a man similarly lived. Some friends have written me off-blog, one who lost her husband to cancer said she felt what I am going through and how lonely it is after such a life — they were academic musicians together, had many more books than the Admiral and I, had bought a retirement home on an island. She may still have had her job. How shall I manage independent scholarship alone?

How I wish this cancer epidemic could break through to the wider consciousness of American society. Word of mouth knows it’s so, many people’s dreadful experiences, ruined lives, with here and there the lucky survivor, but with the control over the news on TV and in the newspapers by oil, gas, pharmaceutical and insurance companies, what chance is there that a campaign can start with funding and effective acts and lobbies. Some huge number of people in this country want and have organized for gun control. Little exists. Ditto for a decently humane health care system. I have no one to confide all this to so I do it here to myself hoping to reach friends. And again if my blog catches attention because I am really telling it like it is, I shall have made a small contribution towards an awakening that something needs to be done to find a cure (however profitable these anti-cancer centers are) and to de-toxify our air, water, food, and thus decrease immense human suffering.

Sylvia

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FlavioGregoriblog
© Flavio Gregori

Dear friends and readers,

I cannot thank enough all those who have written to encourage me to go on and validated the significance of what I am trying to do while expressing myself and reaching out to others.

Many will recognize the source of my header, John Donne’s famous sonnet, “Death be not proud, though some have called thee”, and maybe others know it from Margaret Edson’s play, Wit, as revised by Emma Thompson for a film in which she starred, and was directed by Mike Nichols — to the surprise of many a commercial-minded person, an award-winning play brought to New York City, a hit on HBO, and then a quiet gatherer of patrons in paid cinemas.

I bring Wit up (again!) because today’s cruel incident — sometimes it seems to me every day but has its event exacerbated into body-wearing and soul-destroying experience by the way the modern medical establishment conducts its business — today’s 2 and 1/2 hour endurance ordeal has enabled me to realize how searingly true its dramatization of the human condition facing death as seen through the prism of a system that refuses to acknowledge what all their fuss is about. I haven’t the strength to tell it, and suspect one needs to be inside the maelstrom to grasp the full indifference to the human beings in front of them which the apparently benign behavior of a medical staff subjected us to. Suffice to say I probably made things worse by growing so angry I could scarce contain myself, and the Admiral began to cry. They had hurt him again and again with their needles, their sticks; he had gone hungry to do this procedure which now we were told we could not go until Tuesday when of course we would have to return.

The origin of the problem was again this horror of a pharmacist (Dr [?] Lee) who is empowered to phone me from Prince George with orders about the Admiral’s blood. Again I was pressured into this time giving him a shot of lovenox 2 nights before this procedure. I feared it would thin his blood too much. No, says this guy, and then the threat about pulmonary embolism. So I did it. And then his blood was too thin. For weeks and weeks we have endured this absolutely dangerous set-up where a man hundreds of miles away sends orders for us to give such-and-such blood thinner and then the Admiral is to go to a lab and have his blood tested. This landed us in hospital last week, got the people threatening me with an emergency room, and now this. I asked him, Wasn’t he ashamed to be part of such an impossible to coordinate set-up. I asked him, How much do you make? The doctor at the place denied it was the lovenox; it was some ambiguous mixing of bodily fluids. Right. One thing when we got home: we decided no more lovenox.

Your ability to fight them is limited lest you offend as you need them: once again, it’s need that is ruthlessly exploited here and silence and tact that is enforced — on whose behalf? At one point one of the nurses asked me, “What you are upset about?” as if this is a total mystery. I wish I had said “I’m upset because if we don’t do this we are told inside 3 weeks he’s dead. Sorry to be in such bad taste as to bring it up.” I am getting closer to this kind of talk, but not there as yet lest I turn anyone against him. He says it’s all right as I play bad cop to his good one. I’m not sure.

I screened Wit for years, showed it again and again to class after class. I did think Donne’s sonnet in context ironic, as the behavior of the medical staff in Wit, no matter how bizarre their operations, how revolting their medications, is that of people whose techniques are all a function of avoiding death, and thus paradoxically (very Donneian this) enslaved to death as they conducted their “poison, warre, and sickness.” Now I realize the line also means plainly, death be not proud of what you have led human beings to do and to accept.

Were the medical staffs to acknowledge this, they would have to relinquish their control over everyone who comes for their services — and make less money, abuse people a little less. Why should an exhausted gravely ill patient have to come to a medical center for a test? because he needs it and it’s not made available any other way. Why is this?

I put on the teaching part of my website two student papers whose theses I now see take us to the heart of the matter in reality (beyond the parable movie): Positioned on the borders of decency; a “poignant film.” He looks like Emma Thompson in his wheelchair. This YouTube contains my favorite moment in the movie: where Susie puts her hands in front of Jason, haven’t you harmed her enough:

He is now resting and we again hope to have a better day tomorrow — apart from all these people (including the Hospice ones who are not there for any indeterminate care) I said to him before he went to sleep, Does he think that if I got him dressed, packed our stuff, got us tickets, that anyone at the gate of the US or the gate at Venice would refuse us entry? How about dying in Venice? He thought no one would stop us. But then I thought about the need for galoshes, and decided it would be too wet for us in his present state. He smiled at the picture I conjured up.

FromMovieblog
Venice — he’ll never get there now

I admit I never thought the movie would relate directly to me and my beloved. I knew it directly related to many students in my classes over the years. They’d sometimes tell about it.

Sylvia

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Anne Elliot: [In a sick chamber] What instances must pass before them of ardent, disinterested, self-denying attachment, of heroism, fortitude, patience, resignation: of all the conflicts and all the sacrifices that ennoble us most. A sick chamber may often furnish the worth of volumes.”
“Yes,” said Mrs Smith more doubtingly, “sometimes it may, though I fear its lessons are not often in the elevated style you describe … Jane Austen, Persuasion

Dear friends and readers,

I’ve been writing this blog with a central focus on the Admiral’s cancer since the end of April, and as of two weeks ago it’s becoming increasingly difficult for me to write on. Each time I wrote up until we were told about the diffused metatastic cancer in his liver, I would wait until either a new event or happening had occurred or (usually I made it the same event) something hopeful could be or in fact was construed out of what happened. Or I saw something generally exemplifying from personal life that was real and therefore could have use for others in lieu of falsely optimistic stories. I can no longer write with such a frame of reference. I realize that writing in public is quite different from writing a diary to the self; the eyes of others changes the meaning of the text and the text functions socially. For some my blog might become lugubrious, and sorrow in this USA when publicly expressed directly is often not respected; I have meant to generalize as I went along, to show our case as exemplifying this or that trend in modern US medicine.

Nonetheless, I want to and will try to write on. I have a need to reach out to people, and the Admiral and my life has been locally a life apart, situated in and with one another. Since 1995 (18 years now) that has changed and I have become far more social and been much happier in the worlds of the Net, learnt a lot about different social worlds and joined in with them in physical reality when I’ve gone to conferences, visited friends abroad or very occasionally far away, in NYC too. I know my teaching changed as a result of my better comprehension of how most people react to all sorts of things, not necessarily (still) getting their motives or why they do what they do, but at least an realization of patterns of behavior which I get better at coping with, reacting to. I will in the not far future be alone in my local area except for my two daughters. I’ve made an effort to become friendly with one neighbor and know a few others. I shall have to bear up alone, a widow. How much of my farther away social life (conferences say), travel I will be able to try I can’t say. How I shall find the strength to do this when most of my life all I have done (even at my job) has been partly dependent on the Admiral I know not.

So I will continue my story in order to continue to be with others. I am making an effort not to contract back to what I was and what my daily life was like say in the mid-1980s before I returned to teaching and got a position (however marginal as to salary or place) teaching in senior colleges English literature, reading, writing, here in Virginia. This is all I can manage today about where he and I are.

My pussycat, Ian, has undergone a change in personality. Very carefully, warily, he comes to the front of the house when we have visitors. He wants to play and be friends with people. He sidles up to me a lot more and we’ve gone back to his sitting in my lap late at night when I’m watching movies and/or DemocracyNow.org, reading, writing. I have to watch lest they upset the wires — a new dread.

A friend tells me a large proportion of the women our age (over 55) live alone: either divorced, widowed, never married, separated. I find that to be true in my neighborhood where continually however the neighborhood has changed, there have been lots of older women living alone. She also reminded me of the mortality statistics that show as many men die before 76 (ah I would have compounded for 12 more years for him — 12 just think of the time) as after.

IanTurning (1)blog.jopg

Sylvia

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This morning he was calmer,
more himself,
we talked very briefly
and hugged.
His chest is so hot.
The cats came over
and sat near us
as if this were old times.

Sylvia

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He’ll never be able to hug me again,
   his body
so wracked and ruined
and now ravaged
   by this disease.

Sylvia

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UrnfromGiulioCesareYetSmaller
Urn like that in Giulio Cesare (which HD Met opera the Admiral so enjoyed)

Medicine is the daughter and mother of nightmare — old medieval Latin saying, as amended by me

Dear friends and readers,

We do have a better doctor: Aloysius C Pereira (he too another doctor from another place on the globe — how the money allures them). On Tuesday he spent a good deal of time with us and explained a lot, was genuinely compassionate though I have to say he still sat looking at his computer and typing more than looking at the Admiral, and until yesterday we again would not see him more than once a month. The news was the worst but presented in a tempered way that left room for minimal hope. The Admiral’s cancer is not only metastasized into his liver, it has moved into an advanced stage frighteningly quickly so that it is functioning very badly (“many chemical abnormalities”). Dr Pereira said he would check out another chemotherapy agent (a third) and we might try that too. He would coordinate with the hospice people. He ordered a IV infusion of water and electrolites in the infusion center and by the time we left the Admiral looked better and had more medicine for nausea and we did know what was in front of us.

He shows us two scans: one the Admiral’s liver when he left hospital after the first operation, a soft grey; the other his liver the other day, all stippled in light black and white spots. Dr Pereira encouraged us to go on for chemotherapy as statistically it’s possible the cancer will be shrunk, and the Admiral could get anywhere from 6 months to a year to live. It was at that point the Admiral went white and I could see him stiffen and looked shocked. I think this was the first he really took in how short was his time, for the problem (as Dr Pereira said) is this advanced a stage suggests it will be hard to get even to that 6 months. Dr Pereira said all liver cancers have this same time-frame whether the cancer is advanced at the beginning or not, but the Admiral’s great misery and many distressing symptoms are the result of this advanced stage.

Tuesday night: a shameful episode. I get this phone call from a man who calls himself Dr Lee, but I now know is a pharmacist in a coumadin clinic in Prince George, Maryland. Literally far away from Alexandria, Va. He has been phoning the Admiral for weeks since he left hospital with a blood clot, endlessly giving specific varied directions for how much or little coumadin this or that day and demanding we go in once a week for INR (checks on his blood). This is how medicine proceeds nowadays. It seems the Admiral’s blood was now 16, dangerously thin, and he must have Vitamin K (this makes your blood clot) and I must take him into the Kaiser Permanente facility tomorrow and stop the coumadin pills. He gets off the phone. I worry it was my fault; that I had given him too much, but all I could remember was one half a day and on the bottle it says “as ordered.” Great – that’s to cover Dr Lee and his pharmacy against suit.

An hour later I get a phone call from Kaiser, a nurse named Heather (I don’t know her last name or would cite it) demanding I call 911 and tell them to take the Admiral to the emergency room or take the Admiral to the Virginia Hospital Center; It’s 10 at night, he’s sleeping soundly. I ask her if she’s ever been to an emergency room and knows anything of the hectic atmosphere, how you sit for hours with no one paying any attention to you, and she replies, “you must” and then when I refuse, that if I don’t he could die and now she’s done her duty, as I’ve been apprized. She almost said aloud now we Kaiser won’t be liable. That’s all she cared about. Not him in the least. Half hour later another phone call, this time a hospice nurse, Elizabeth Schindler, with the same nagging and Elizabeth manages to frighten me sufficiently, (“he’ll bleed internally and you won’t know”) and so I call 911. I wake up this poor man and explain I’m coming with him (I’m terrified the 911 people won’t take as they refused to do on another occasion 30 years ago), and help him dress. The ambulance is out there, the massive people in and I begin to explain and say I want to come if he must go, but “Do they happen to have any Vitamin K to give him?” and then they could go away. I met the only humane man I talked to that night. The leader of this troop. He looked sorry for us and said “this happens all the time.” I looked astonished. “Yes,” these medical people make mistakes and then they nag people to call us; he seemed reluctant to take us. The phone rings and it’s Elizabeth and I tell her the 911 people are there, but it seems she has relented and now it’s no long impossible for a hospice doctor to order an injection of Vitamin K and no longer impossible for her to administer it. “Tell the 911 people to go away” and I’ll be there in 45 minutes.

I put the Admiral back to bed. In the event it was after 1 when she came and she came with 6 pills of Vitamin K, 2 for tomorrow morning and 2 for the next day. I thanked her and she began half to apologize and explain why she was late. It was a story worthy Mohair’s Money-Driven Medicine: one doctor cannot order an injection because he belongs to another organization; a pharmacy can’t do these pills because this is not their remit; it took hours to contact a 3rd doctor who would agree. I offered the idea that she was not to blame but the system and looking back my brief comment about how both patients and medical personnel who would do a good job are stopped by the profit-motive shaping all these individual transactions must’ve angered her, for she sat down in my living room to “explain” to me something. This appeared to be vague suspicious references to the Canadian socialist system; when I tried to describe the real state of the case in Canada, and say Medicare was a single-payer system and so socialized medicine, she turned to my library and said, “you have so many books, have you read them all.” This was spite. She had been longing to say that. This kind of remark shows someone who has no idea why someone would have a library: that one works from it, lives through it. I wanted not to quarrel and just said, “many many” but later regretted not saying “I reread a lot” and showing her Nuland’s How We Die. Foolishly as it’s useless to talk to dense people. She then said I ought to be grateful to her because when I said the 911 people were there, she could have gotten off the phone and gone home; she had stayed on the job two hours she didn’t have to. Again I wanted to be polite and didn’t ask if she got over-time. (I doubt she did). I said mildly I had thanked her. At this she got up and with a semi-friendly tone (fake) left.

This is a horror story — if I had not resisted these awful pressures and without the kind leader of the 911 team, imagine what the night would have been. As it was when he got up I noticed a huge black-and-blue mark up and down his back, and over these two days since bruises. No more coumadin but the harm had been done. Dr Lee called that morning and for the first time I told him what I thought of his business. He appeared to have heard about the incident the night before. He nagged me again to bring the Admiral into Kaiser for a blood test. I told him to go away.

That Wednesday afternoon the Admiral did seem better. He had had 5 rounds of chemotherapy pills twice a day, and who knows maybe they were doing something. He tried to eat — tried to make himself an omelet — failed but tried. He had two cups of tea with milk. On Monday and Sunday he had tried to eat cereal, sit with his ipad as he once did each morning. He couldn’t. It was to me such pathos that I took a photo.

TryingtoeatCerealUseIPad2

When the twice-a-week visiting nurse from hospice came he sat and talked. He bathed himself — a stubborn reaction to the coming a man who we know realize is there just to help him shower and nothing else. The nurse too I see is very limited in what she’ll do for him physically – she just won’t. (She dressed very prettily by the way, unusual for a nurse, and like a number of these hospice women wears the biggest diamond engagement rings I’ve seen in a while. They are a species in their own right.) He seemed to go to sleep well in the evening, but in the early dawn he suddenly worsened again. He had again been refusing the pain medication (as it makes him so groggy he thinks – but his lack of clarity may be the liver cancer) and it caught up with him.

As I have done before, as Thursday morning progressed, I became frantic with my desire to do something to help him. I began my usual phone calls to the hospice people, to Kaiser, messages to the website, and got the usual unsatisfactory advice and directions: give him this pill from the extra-special box we gave you in the fridge. I left a call for Dr Pereira and to my astonishment got a call back quickly (also one from Dr Wiltz who had heard about this 911 incident and wanted to know the story as I had experienced it) to bring the Admiral in. A very hard thing as he was suddenly much weaker. I should say by yesterday he was again moving out of consciousness frequently; he twitched; he was in great pain without sufficient morphine (though he suddenly told me he had been quietly taking the dilaudid — without telling me so badly does he want to control his medicines), nauseous, could not walk without falling unless supported, every wrong color, his voice hoarse, de-hydrated. When we got to Tysons, an order was in to go to the Infusion center. Now two hours of an IV and another meeting with Dr Pereira. Dr Pereira did not appear alarmed, but he did not look at his computer but rather sat close to his patient and after a while said we should go into hospital.

Why? because there we would have interventions on the spot (yes he knew about the 911 incident too) and it was clear the hospice team was not managing to be the intermediate layer of care it was supposed to be. I was relieved to think someone would care for him, that they could enforce the pain medication as I could not, maybe offer better medicine for nausea (I’ve now discovered there is no more or better than the 3 I have), they could do their cruel INRs (they stick him) there. I drive him there and it’s 2 hours before a bed is available. We are treated as if this were a hotel and the room needs to be readied. He is so restless from sitting in the very uncomfortable wheelchair. He looks like Emma Thompson in Wit in the second part of the movie. Finally a bed, and a nurse one hour later. I go home after 10. My neighbor from across the street whose husband died similarly in half-agonies from the medical interventions and a “very bad” cancer, Pancreatic, came over and talked to me. She shared similar experiences and urged me to visit her when I needed to. But she didn’t want to come in. Maybe I’ll go on Sunday afternoon — I’ll see for then I have to leave him.

Today disillusionment if I thought someone was going to help him for real. I know they can’t cure the cancer, they can’t even lengthen his life much without shooting him up with poisons, but the truth is they can’t or won’t help against the pain much or nausea without konking him out — as the liver cancer is (they say) in such a bad state. It’s such a central organ. Like the first time in hospital I had all sorts of visitors including a doctor, another now head Hospice nurse and Hospice manager who pronounced themselves an other intermediary palliative team. They did try to talk to the Admiral and ask him what he wants and examined him. He couldn’t talk much but I was able to explain what he meant (and he nodded each time). Then (as I now look back on this) I was subjected to 45 minutes of talk separately. It was emotionally exhausting. It seems the hospice people are said not to be doing their job right and we have to change that. Miscommunications, misfitting types were adduced. I was tempted into opening up and pouring some of my distress and soul out in front of them, but the doctor did say he would provide pain medication for enough time that the Admiral would see it could do good and yet once he got used to it, he’d be as clear as his illness would allow and would accept the regime. It’s not true as later in the day I was told the Admiral is coming home tomorrow. That’s not enough time. Then I was told by one nurse her prognosis — a similar one Elizabeth gave me and whether true or not (very short time-frame) I begin to realize this is in her interest to say that, to get me to accept this situation and perhaps change my behavior to be much more convenient to them.

For it’s me who is phoning both the death track (hospice) and giving the life track people (hospital, medical centers) a hard time to do something, bothering them. They all want a situation where I stop this. Later that afternoon I was visited by another hospice team leader who took down all I said, and said, she would change our nurse, no more chaplain and send a full-day nurse the first day home.

In a way I’m thinking I’ll do what he said he wanted by Dr Pereira Thursday before putting the order in for the Admiral to go to the hospital: he said he was “not sure.” And then: “Just stop.” “I want all this to stop.” Dr Pereira appeared not to understand. I said he wants all these medical annoyances to stop, for this is what they are for him in his state. More: he wishes like I that we had never begun with you people. I wish on April 28th when we had been told he had esophageal cancer, we had got on a plane and gone to Europe. We would have had 5 weeks of joy to remember ever after. Instead he’s got a ruined body and has at most had one good (if compromised) week since May. I said, “We should have said fuck you, and fuck off.” I know I conceded we would have ended up coming to you for help but maybe he would not be in quite the bad shape and distress he’s in now after all he’s gone through. (Gentle reader, I now loathe Dr Fortes who I feel was not candid or didn’t emphasize sufficiently if he mentioned it at all the 30-40% metastisis into the liver. Fortes harmed the Admiral — Jane Austen was not harmed by her physician when she had her lymphona form of cancer.)

When he comes home tomorrow, if he doesn’t want to eat, don’t. If he doesn’t want pain medication or wants to take it in whatever way he wants, fine. Anyone phone me to bother me because they fear suit I’ll tell them if they call again, I’ll hire a lawyer as I smell a possible suit. Not because I’d do it, I probably wouldn’t but to make them go away by not going along with their barely concealed hypocritical motives.

Meanwhile in his room the nurse assigned to him ignores him. Marissa her name hardly ever goes in there; she is ever hurrying off to order this or get that, or be on the phone about stuff for him. But be near him, forget it. in the previous hospital stay he was the darling of the nurses. Now they all shun his room. The nurse attached to the room never made eye-contact with me. She would not even put salve on his lips. After an hour of asking her for this, another nurse came in with a cup of it and ran off. Oh I saw Antabili for a few minutes, what a waste; this was her afternoon in the hospital, and she spent it at a computer for hours; she stopped by to remind me argumentatively she had said and done this and that so as to make it clear her authority had not at all been diminished. A dying man in a bed nearby was forgotten.

He is there more than one realizes — his alert consciousness. When I went over to say goodbye and ask him to forgive me for leaving he seemed to half-open his eyes, and say he heard, and “it was okay,” and he smiled at me the way he sometimes did. Affectionate. He knew I couldn’t do him any good there. He was never a false sentimentalist. He is acting this way to conserve his strength.

I finally left at 5 to get home to Yvette so we could have a decent meal and talk together, and be with the cats who have become upset with all this. They now stay in a different room from the Admiral when they used to love nothing so much a to crawl all over him and sit on his lap. They stay away from me too sometimes. I found (very unusual) two bowel movements on the floor near the litter, but not in it.

What I’m looking forward to now. Bringing him home with me and however sad his state, keeping him here.

I write this blog to expose as much of the truth as I dare about a real case of cancer and how the medical establishment treated it in the hope people read and circulate it (and the earlier ones in the archive “cancer treatment & progress”). Let this be my humble contribution to the literature on how sickness is treated and experienced in the US. I spent one-third of a term for 33 terms doing all I could to assign and discuss intelligent materials about how medicine is practiced and experienced in the US today. I grieve that I now have a story to add, but add it I will. A friend who reads this blog: “I have found that the way to bring it to public attention is to talk about it – to be honest about what it all means. So many cancer patients are painted as ‘brave’ and ‘noble’ that the realities of the illness and treatment are lost to the heroic narrative told.” I’ve written always — whatever topic it is – that to tell the truth does help. It wont set us free, it won’t change human nature but if you don’ begin to expose what really is how can you begin to change it for the better. And some things can be made better — powerful people can turn improved behaviors around to make a large profit for themselves so the fight is perpetual. As to courage, I hope I have shown how brave my husband has been and how fine and noble his character.

Gentle reader, it’s more than we are in the “middle ages” when it comes to this disease, and people are ignorantly tortured and ruthlessly cut up (and big fees pocketed) in an effort to help them. The medical community is one only in their efforts to protect one another; after a time as this is their job by which each person makes money they pick up the ethic of self-protective guarded decency and follow the route which shaped by the reality that each transaction (patient, pill, operation sold) is a possible profit or not cost-effective.

Sylvia

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