Shows of Force: “scientific” cancer treatment/where we are now

Make that May through September 2013 ©xkcd

Dear friends, readers,

Again I’ve had a hard time making up my mind to write another blog report. My guess is people will get tired of a litany of woe, and many want to shun this or me. I get tired of it. But I started as a release, then to keep a record I could look back at and remember (much of my website is made up of texts I actually have used over the years), then I conceived it to be about general topics arising from the experience (this when more hopeful), and now at the last, what? the same reaching out as ever, wanting to tell the truth (or what use is writing?), but knowing (like Austen) there be truths that cannot be told except very privately or not at all.

My title comes from the Admiral. He still comes up with witticisms and forcible phrases. Yesterday Izzy and I decided we would try to get a carcinogen- or at least cocamide-DEA free shampoo. Said he as we marched out: “Have you allotted enough time for this?” 98 shampoos include this deadly chemical, which gives the hair afterwards a patina of thickness.

I told him about a movie I’d watched, which I had found persuasive, about a man named Burzynski who runs a clinic in Texas where he claims to be able to put into remission a number of particularly awful cancers: the movie is persuasive because it dwells on court cases against Burzynski, which he’s won; a kind of harassment and determined hounding to put him out of business is what emerges; there are the satisfied patients who come to the court room to testify. The medical establishment certainly has no effective insight into what causes cancers, how to prevent, cure for sure, the etiology and their “shows of force” (Admiral’s phrase) are just that. They differ from Burzynski and most unscientific claims because the doctors are seen to be doing something really forceful against this malevolent force, be it cutting out organs, amputating, delivering strong poisons in the form of chemotherapies (that I now realize don’t cure and when they work it’s not clear at all why; nor when they get a strong adverse reaction) or burning through radiation. The unscientific (quacks is a bad-mouthing term here) are often suspiciously non-harsh, offering procedures that are not in themselves destructive. And the scientific medicine sometimes works; it does save some people, lengthen life, is efficacious against the terrible pain cancer causes, can seem to cure a very few cancers.

People want to see something being done to counteract an illness. In George Eliot’s Middlemarch Lydgate discovers this much to his chagrin (the patients do not care if the pills are useless); ditto the doctor in Harriet Martineau’s powerful mid-century Deerpark (not as well known as Eliot’s book).

They’d rather be doing research (Douglas Hodge as Lydgate late at night)

Centuries of blood-letting, painful cupping, and nightmares of techniques then testify to people wanting some force applied to the body, hard and keen. I remember Samuel Johnson crying to his doctor to cut cut cut, to release the liquid from the dropsy, in the hope he’d live just a bit longer. Trollope’s Dr Thorne, though didn’t mind selling pills as an apothecary, and genially did useless but not too forceful things to Mrs Gresham (whose ailment we are never told) in the novel named after him.

I have realized all along that until Aug 3rd/4th most of the pain and fear the Admiral had known was the result of what the doctors and their teams were doing; so he couldn’t swallow so well, so what? Only when the cancer metatasized into the liver did it in itself become a cruel enemy to my beloved’s body and mind. And then that drastic operation (esophagectomy) persistently has made everything worse. The tiny stomach allows little food at a time, and with toxins from the liver filling it, who can eat? It removed the prime tumor, but I now know it’s not the prime tumor that spreads the disease, or not alone. I begin to see the operation as potentially criminal when you look at the death statistics in spite of it and remember how much money the surgeons charge.

The chemotherapy this past Friday through the mediport has come and gone — I have to say he was well-, very kindly treated by his nurse (he looked so bad, far worse than anyone else in the clinic) for the 5 and 1/2 hours it took, much of it partly hydrating him. It seems to have had no effect: they gave him a powerful lot of anti-nausea medicine and yet more for pain and so all he felt was an intense aching in his liver on Saturday. I made a story in my mind that the chemotherapy agents were fighting with the cancer cells (who one site told me have wicked ways of replicating themselves around the chemotherapy, can produce immunities to it); if so, the cancer won. He’s been taking xelodas (chemotherapy pills) again, 2 weeks of these 3 twice a day and then one week off is the regimen. They taste awful (he says) and have had no discernible effect.

I’ve been told by Kaiser that radiation for him is out and now he is probably unable to make a trip to NYC for a consultation if the Sloane-Kettering people were to consider him a good candidate for such (more rough) rides. He himself wants no more of any of these things.

The Kaiser plan is not to do chemotherapy more than once every three weeks — this may be a new norm. Anyway they”re not doing it that often. The next chemotherapy treatment is 9/20. In the meantime we have these chemotherapy pills. I think (because I don’t trust them) that this is some kind of palliative show and they could do more. OTOH, I think Dr Pereira really was not keen on chemo at all for the Admiral and is being super-careful lest he hurt him. But let us recall chemotherapy often does not work at all, it’s not curative, only a control and often has adverse effects. Burzynski may be a quack, but these shows of force are mainline assaults on the body itself. What needs to happen is the cancer go into remission or not spread; how or why this is triggered to come about (they can explain some of the how but not why) is anyone’s guess. So a recourse is magical thinking, pray, hope big for remission.

He continues to deteriorate. His neck is now severely discolored. Reddish. He sleeps most of the time, dozes in the bed we bought him as an adjustment to life without an esophagus; it is a comfortable one. Yesterday he was just not well enough even to try the new wheelchair; the day before after a half a block he said he’d had enough and wanted to turn back. I wanted so badly for him to live into fall, dreamed the last dream of pushing the new wheelchair, but I realize even this is now too much for him. No dream came true. He drinks milk, sometimes 3-4 glasses a day, often less. He claims the boosts add acid and make him throw up. Yesterday I tried a little scrambled egg, a favorite with him, with lots of butter in the pan and milk. He managed two mouthfuls but then his arm began to tremble and he could take no more he said. It is true that much earlier in this “process” (as the few Hospice people I now see intone) he was unusual for refusing food, and he might have lasted longer had he been willing to endure the trial of food.

Among other things as I look down at him I think he’s been very brave: to have had that operation, uncomplainingly, how until the liver metastasized how cooperative he was; now he knows he’s dying and believes in no afterlife, no god, no meaning much (the world a mad-house when it comes to the wider public doings, and dysfunctional in personal ways when it comes to socializing are parts of his views) and seems to accept this inevitable, sometimes with a smile. He’s glad not to be in too much pain it seems and yes not to eat is so much easier, eating is pain. Sometimes he moves into retreat mode — then I do become intensely lonely. I cry out in the night, “Don’t leave us. Stay with me. Don’t let go.” I hold his hand. I can ask him will he take this or that, but throughout he has refused my suggestions — as he often did in life. He’s five foot five now, weighs about 142 pounds. He wobbles as he walks, leans, strains heavily on his cane.

A friend reminded me of a line I heard in Last Orders: as Michael Caine as Jack lays dying, he says to Bob Hoskins as Ray, the best friend, he has it easy, it’s those who are left behind (Amy, Helen Mirren) have the much harder road.

Jack is telling Ray about a secret cache of money, and also a large debt not yet paid

The thing is in the movie we get a softened ending, as for years Ray (of light) has loved Amy and she, him, so she is not alone after all, and when last seen they are thinking of going “down under” (to Australia to see Ray’s daughter). She does enjoy traveling. And he and Amy’s son “see her right.” Make sure she is solvent. My friend was empathizing with me. It’s certainly very hard enduring watching this helplessly for the most part, and I am intensely anxious about what the future holds for me, worried about the process of getting my widow’s pension, the insurance, some lump sum due too. Without Caroline and Yvette I know I could not be pulling off the independence I’ve just begun to acquire in the areas of handling finances, the electronics all over this house, two key parts of life if I am to survive. We did buy me a wide TV (on a stand) so now for the first time in years I can watch TV, and I’ve replaced my keyboard with one where you can see the letters; am slowly learning how to use an i-phone and have got to begin to get used to my Macbook Pro (which I’m told does lots of things I would want the computer I’m typing on does not).

I had a happy experience on Saturday night. I phoned my ex-student, now good friend, Thao, who lives in Toronto, Ontario. We’ve begun instant messaging during the day and that has helped me through two afternoons; well, we did something called “face-time” using the i-phone. We could see one another while we talked! She tells me the g-mail in my Macbook Pro would allow this camera effect while instant messaging. I do find texting hard — such tiny letters — instant messaging is easier to do. She and her fiancee went to Germany this summer, and here is their picture from Munchen I believe it is:

I was in Heidelberg (which this photo reminds me of) for 2 days sometime during Christmas 1968 — part of 2 weeks I spent traveling (stumbling is more like it) through Germany with no German whatsoever. I spent 2 days in East Berlin when it was communist. I remember most strongly how quiet it was with few ads anywhere. I still remember my intense relief when I returned to him in Leeds late one January night. I had lost track of the days while I spent a month almost alone in Paris, was in a bad emotional state, and vowed to travel alone no more. How thin he was then! no job, no student grant (he had been thrown out the previous summer having failed his exams, not having studied at all), he looked like he hadn’t eaten since he last saw me. Well then the next morning we went out and got eggs, kidneys, sausages, his favorite breakfast foods and he had a fry-up. It was then we began to live continually together.

He has been my solution in life. I always knew it was no good to live alone the way we did, but it was what he wanted and what I didn’t know what to do about. I dreaded this but told myself precisely this scenario would not happen: early death, but it has. Woody Allen’s Blue Jasmine has as a theme how woman find their solution in life, make their adjustment by marrying the right man for them. Once he is in place, they are okay financially and they need not worry about companionship or finding what to do next. Maybe I’m reading myself into the movie, but I think not — it’s not the only paradigm but it’s the one that leapt out at me.

Maybe we should put it people can make it as a pair. The admiral and I made it as a pair, each supplying what the other lacked. I did supply lots of help in various ways. It was I who became friendly with the landlady of this house (through letters) and so I was really the basis for her selling us the house the inexpensive way she did, and this house has been a godsend for us. Stability and comfort and privacy.

I write this as if I were sane while saying it but at some level I don’t feel sane. I’ve read again and again how widows are sad creatures, leading bereft lives. I’ve noticed that widow’s suicides among poets (women poets kill themselves) usually occur at the three month mark (three months after he has died).

It has all happened so fast. Last summer at this time we had come back from Vermont, been to Glimmerglass, were looking forward to a year of HD operas, I’d begun my renovation of the attic spending no money. Just this past New Year’s Eve we danced late into the night even after at the Kennedy Center we were told “Elvis has left the building.”

A photo of Yvette and the Admiral taken by me earlier in the evening

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Hospice turns out to be a referral service. Yes. I’ve been given no referrals to in-house nurses, but to companions of the non-medically trained type my mother had — plus funeral homes, and the social worker-psychologist will supposedly offer a grieving-support group eventually. I’m not sure I will get that as the person who was supposed to offer volunteers to help me never called. Apparently I am supposed to chase them. I’ve learned the social worker in particular is no friend, and remember with a smile how the first two weeks of August the Admiral was continually overtly hostile to them, even throwing this very social worker out. Hospice works like the old Welfare: if you are seen to be pro-active, trying to live would be the case here, they drop you from their books. I made the mistake of telling her I might go for a second opinion and wanted treatment at Sloane Kettering. Her immediate response, Oh, you had better tell us for then you are not eligible for this. So much for her paid companionship. I won’t have her here again lest I tell her something else she can check off on her sheets. I don’t like that they take notes. They do dispense medicines aplenty. “Our” nurse comes once a week (I remember the admiral laughing at the phrase when it was twice a week): one of his jobs is to okay or not okay medicine (so he too functions as a barrier at times).

I can’t help but be dissatisfied with Kaiser, not because they don’t emote, but because they seem to me not to do enough practically at all. Until now I have been more or less satisfied and defended HMOs: I would not know where to go for a doctor without them. In April they caught the cancer and suddenly there was a team of reputable doctors and everyone was acting. Once though the metastasis went into his liver, I feel they gave up on him. It was four spots and by the end of a week (it seems) diffused through the liver. That’s when Dr Antabili (still profoundly bad as a doctor: she stopped by to say to me, see I told you so about something, vaunting her position, oblivious to the Admiral sitting next to me, as if he was not a person who matters), Dr Antabili said no radiation and made the referral to a hospice. And the hospice were all about death until I stopped this kind of talk. I managed another in-Kaiser doctor and we now have the mediport and all the chemo Kaiser is willing to dispense to him. (Cisplatin was it seems discovered or invented in the 19th century so it’s an old drug.) It has taken 3 weeks to get to this from the time of the second diagnosis, some of which was taken up with his blood being too thin (their fault) and being in the hospital and bouts of intense agitation and howling pain (now under control).

For the first time I see what I liked about Kaiser — that a doctor had no personal business interest in doing an operation (nothing personally to gain) has its bad side. Does Pereira see himself as involved with the Admiral — is his position in the organization at all threatened by what happens to his patients? I daresay it’s rare and a patient outcome that is bad has to happen at least several times. They cover up for one another. I complained loud and frequently about Antabili and it seems not to have affected her position at all. Suppose one went privately, then it might be a doctor would care more for each patient not just a sale but someone who could hurt or mar their reputation.

And of course I think had he been important someone might have told us about the edge cutting things they do at Sloane-Kettering and had we had money, we would have gotten in. I can’t help but feel he’s dying so soon because he’s a nobody at an HMO.

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I am still glad I retired from the teaching job. I had had enough and we had the one good year of full retirement together. My terrors and anxiety over not getting my widow’s pension would not be allayed by that job as it’s the pension I’ll need — I do trust no one. I do get a social security check every month now, not big, but a real help even with the Admiral’s full pension. I couldn’t have an been his caregiver all this time — or write this new paper on Andrew Davies’s film adaptations of Trollope’s The Way We Live Now and He Knew He Was Right, which I am now half-way through. It’s been much quieter this past week you see as a nurse. I struggle so with writing for publication conventionally — yet can write blogs fluently. It’s that when it comes to publication I’m intimidated by the people who are in charge. I thought I was beginning to break the block (as it is one) by writing papers for delivery at conferences more easily, and since this was to be 5000 words (altogether, with notes and bibliography) it was the equivalent in size of a 25 minute paper. But it didn’t work. I’m not one who can write for publication in my spare time: I always go into deep study mode first, then micro-analysis at length, and then the arduous writing. I’m sure many would think me unbalanced, obsessive, but it’s the only way I know to get over the hump in writing for publication — to over-do.

So let me end by returning to the dream worlds of books and scholarship. Another older woman character I find myself bonding with in film adaptations of great novels is Lady Rowley as inhabited by Geraldine James. Who plays a character matters. The actress (or actor) embodies the character in a characteristic way to him or herself and that is part of their meaning to the viewer. I do like Emma Thompson; I find every time I see Helen Schlesinger I am so drawn to her (Mrs Smith in the 1995 Persuasion, Madame Melmotte in TWWLN), Emily Watson (the maid Elsie in Gosford Park, Martha Stanley in The Proposition) and so too Geraldine James — first seen in Jewel and the Crown and last time in She’s Been Away, a stunningly moving movie (again – with Peggy Ashcroft) about a woman put in an asylum for much of her life because she didn’t cooperate, made a real nuisance of herself when she didn’t fit in. What I like about her in the movie HKHWR is how she voices bleak truths, acts on them so comfortably and enables herself and all around her to survive (she parts Emily from Colonel Osborne with hardly any fuss):

She tells her husband they brought their daughters up to be independent, unconventional

At another point she tells her daughter, Emily, now separated from a husband who is going mentally to pieces from the strain of separation himself, to give in, apologize, and since it’s too late to reassure her husband’s sexual anxiety, let him think what he likes; here’s just an epitomizing bit (Davies nowadays has the ability to pack a lot in a few words by the full context):

Emily: By telling lies and living a lie
Lady R: You wouldn’t be the first women to do so

I wish Davies had given her a first name. I know I wish I still had my facial structure when say 10 years younger, and my skin as smooth as James’s. Lady Rowley’s a minor presence in Trollope as is Madame Melmotte and Madame too lacks a first name in TWWLN. In Davies’s TWWLN, though, Mrs Bozzle, who is not such a favorite with me — I couldn’t bond with her outlook as it’s too resigned and yet conventional — is given Susan. Not that I’m for living through lies.

So much easier to fill the mind with the dreams of art (“research”).

The Admiral can no longer read my blogs. He used to read most of them. He was proud of my achievements as he saw them. It’s no longer as much fun to write these as he’s not going to read them any more.

Sylvia