He has been the steel center of your existence — a friend
Friends and readers,
You may not want to read this blog after this entry. If you do not, just quietly cease. Don’t tell me about it would be the kind thing to do if you do not.
We had our explanation on Saturday morning, August 3rd, probably around 11 o’clock. In my last few I have been saying that the Admiral has been having problems walking and saying he feels wretched, sick somehow inside his digestive system without being able to describe it further. I see now that about a week and a half ago (or a little more) he stopped gaining strength and getting better. The first specific sign was a muscle strain that took a few days to go away. It hurt a lot. We thought maybe we had been doing too much, walking too far, maybe should not have gone up that hill? We put down how long it took for the muscle strain to go away to the state of his inner body where his ligaments, other muscles, whatever else is there that holds it together has lost its elasticity and so there is nothing for the muscle to bounce back into, fit itself where it belongs.
He seemed to be less able to eat. A couple of nights he ate almost nothing. The foods he had taken such pleasure in from Trader Joe’s didn’t please any more.
Then he strained a muscle again. Or so we thought. It was Thursday and suddenly we worried he would not get to Caroline’s wedding. It was nearly an hour’s drive away. He said it would be a hard one for him to make because it hurt him when the car bounced and he felt nauseous. He had had his beard cut for the occasion, and like Yvette and me, had an outfit all ready. He did say something which worried me, and I couldn’t forget the words: “My aim is to get there, to appear to look like everyone else, to smile and to seem to eat and drink, and then to get myself home.” The words registered this sense of his that he is on the other side of something from other people now, cut off from them.
On Friday the pain had grown worse. He told me, startled at this, he had been shaking. I saw he was at last succumbing to taking some strong pain medication we have in the house. He said it doesn’t help much or not enough and it makes me groggy and feel bad but it helped some. It localized the pain.
Saturday morning he woke in screeching pain — he had cried out for the first time in all this ordeal on Thursday night. Early dawn he was restless with discomfort. And he cried out again and said “call Kaiser.” I did and said the formula that usually gets the person on the other side of the line to listen, be respectful, no longer sound like a tape, and give us an appointment. “My husband has esophageal cancer … ” I don’t say everyone: it would not faze Dr Basima Antabili, right now our oncologist. (Read more about her here.)
We got to Urgent Care at Tysons Corner Kaiser Medical Center and were taken into their hospital-like area quickly. Then the Admiral said what he was fearing: he had a pulmonary embolism; he wanted to come in for they can kill and immediately. This because of his blood clot still being there — he is on coumadin (warfarin). The nurse asked him had he ever had a kidney stone. “No” but this explanation was one that we would be relieved to hear. The doctor on call, a Dr Chaudury (another of these international people — what doctors are left in these countries where they can’t pull these huge sums they do here?) said “fingers crossed.”
They had set up an IV, given him pain killer (morphine), something for nausea and a bag of electrolites. Dr Chaudury came in — around 11 as I say. It’s “liver mets” she says. “Four spots.” She said it so quickly I couldn’t hear her or I was not sure what she said so I asked her to repeat and explain. “Liver metasasis:” the cancer has spread to his liver.
Look it up if you don’t know about this cancer as metasasis. The wikipedia article is grim and there are essays on the Net which will tell more: such as the mean life left is 7.3 or 7.8 months; the Admiral later found a google on-line essay which he said was pretty good, and it said people have lived as long as 18 months but all talk of 5 years is anecdotal.
He was “not making the wedding” he said. We had told the nurses and Chaudury about the wedding, saying we needed to leave before 2 o’clock so we could get home and dress and then drive there. Dr Chaudury said he could. I had phoned Caroline and the rabbi had this scheme that she and two friends could bring a computer with a Skype set up to our house and then the Admiral could watch the wedding from home, be seen to, and himself see us. We resisted this. I so wanted him to be there. But when we got home after a terrible drive — he was in pain, but it was more than that, he was intensely upset and frightened.
We had you see gentle reader begun to believe he would live and for a number of years. We had made small plans — the HD operas this year (only a 5 minute drive). Go to nearby plays or a concert. I admit — I knew — that during the two or so weeks (looking back now) he never felt strong enough to get on the Metro, not sufficiently without weakness. A trip to the National Women’s Museum to see an exhibit was put off (it’ll be there until November we said). We had gone to Trader Joe’s twice and he had enjoyed that, though the second time he said he had been too active, and I saw he was trying to carry bags or goods. I tried to stop him doing that but was not quick enough.
I too was in deep distress. I had read the wikipedia piece upon arrival (rushed to computer to read it), and found that Yvette had read it already. She was there waiting for his in the vestibule as we walked in — her face as grave as the day we had been told he had esophageal cancer (April 28th). I phoned Caroline and said, yes, if Michelle was willing to bring a computer i-pad and set up a Skype, we would have to do that. The giving over was wrenching. I did offer to give Caroline an explanation but she said no, tomorrow; in the event just before I went home that night she suddenly was there by me and said, “It spread.” I said “How did you know?” She said something like “it’s obvious.” Then, “Where?” I: “The liver.” I did not write her about what this meant until yesterday afternoon.
Yes I had been buoyed up — while critical of their motives and aware of the startling crudity and cruelty of their methods — I began to think it was worth it all if Jim would have many many (I thought 10) years of life. I was deluding myself this was more than a chance I was hoping would continue.
I dismissed the reality I did see so clearly each time I visit a doctor: they understand nothing of cancer. And they either seem or are indifferent to the person in front of them. They prescribe harsh treatments which hurt and appear not to notice. In a way they don’t notice. Dr Fortes told me he could take anything from a patient but “complaints.” I could cry all I wanted, “just don’t complain.” He liked the Admiral for not complaining. Ed Rosembaum’s book (A Taste of My Own Medicine) upon which a sentimental movie, The Doctor, is based, is meant to bring home to all readers how doctors erase out the pains they are inflicting and the probable results to them psychologically and physically and the statistics which argue against the treatment as a mode for all, as it works only for some or a few. Some of them regard the person as a disease in front them; the worst see you as their potential enemy (you may sue), a nuisance, someone the thing to do is guard against. The admiral had worked to make himself liked while in the hospital by appearing so grateful and respectful that he was taken kinder care of — by some of the nurses and technicians.
All this works to keep up the super-expensive fees each doctor gets and the outrageous costs the hospital (with people in it behaving like teams of technicians over an object, the patient) charges.
In the video with Dr Fortes on line he had said something I kept remembering. No matter whether he does invasive surgery or minimally invasive, no matter how well the patient does with the surgery, the outcome statistics (how long you live) alters little. Why is this, I asked myself. In the film he does not explain why this is. This is the sort of information they shut out when they want to do their thing. He told me (I was taken aback by the frankness) that he enjoyed doing these drastic surgeries. (Atul Gawande in his Complications talks of the thrill of power, you feel like a god who saves people, in charge, and expect everyone to regard you as this Special Being no one can question or bother or say no to — at your peril. At your peril. What a laugh.
Well, the statistics for metasasis are high, especially in the case of digestive cancers in the liver. He knew this. He never once said it. He referred to the 50% complications which include results that kill from his surgery, but nothing afterward. I think when we left his office that last visit and looked happy and the Admiral just on a cane, Dr Fortes had for that moment forgotten his real full knowledge of the probabilities, of what could happen easily.
So had the Admiral been buoyed up. I remember that last Monday when he was so lively. Gentle reader, if you don’t realize this as yet: I try hard not to lie, I hate lies, but I do practice omission so don’t tell everything and often leave out the really private as well as justifiable despair.
He is transformed — he is so often in such pain — some of it still from that operation. He belches all day long, and when he belches he puts pressure on the “tender liver” (his phrase). So too does he cough a lot. Now he will feel like vomiting. He walks with difficulty holding onto where his liver is. He suddenly looks gaunt. He has trouble dressing by himself again. He holds his head up with his hands. He goes to bed early and often — as there he relaxes some and is more physically comfortable. He shakes. I’ve seen one painting of a woman like this — mid-19th century, Too Late by William Windus (1822-1907).
She has TB. Her lover has returned from a time away to discover she has consumption. He covers his face in despair. Windus’s career never recovered after he exhibited it. He was excoriated by the few reviews (Ruskin in the Art Journal among them) which spoke of it. (See Christopher Wood’s Victorian Painting.) It’s not late stage TB.
So this is what cancer does to you today, now. The statistics are 1 in 4 in the US gets cancer before age 65 (more on this another time — for now distrust anyone who immediately tries to arouse suspicion at this high number; they may be making money on some aspect of our environment). Hitherto the pain the Admiral has experienced was from the treatments he was getting, not the cancer. It was hard swallowing, but his throat was not in acute pain. Cancer ravages you and hurts bad. This is why then people choose the operation which is painful too because maybe it’s less painful — in the immediate sense if you are cutting the cancer out, afterwards the cancer cannot destroy you further.
All this talk of choosing not to do the chemotherapy and thus the last few months being comfortable and having a last hurrah are fatuous. Whatever few people can manage a little of this do it under great stress and knowledge of what’s to come soon and probably much pain they are managing to control as the cancer spreads.
Information can help. Yesterday we did see Dr Wiltz, the primary care physician who has been so decent from the beginning, the guy who caught the cancer in the first place. It was he who prescribed the pain medication and an antibiotic (for a urinary tract infection — this is par for the course, the kind of thing one does not mention). I asked him why is liver cancer so painful?
“The cancer is stretching the liver.” A few words. Six. The kind of statement Dr Antabili would regard as a waste of her valuable time.
He actually pulled up the C-scan so we could see a picture of the Admiral’s liver — it’s in the computer site that all doctors have access to at Kaiser and also those connected to Kaiser. He could not explain all we saw — well, he was not 100% sure of himself (as they really believe they have accurate truths) and so would not say anything — lest (let’s not forget) he get in trouble. Offend a colleague — he phoned Antabili and for him she interrupted her busy day and talked. He then began to pretend she had made the prescription (as did she on the phone), it had been him and now he talked as if he had not merely been calling her (on my behest to for “her to get the message”) but been calling her to consult about this medication.
I’m not fooled. I don’t forget he’s one of them; protects his career first. But he does have some conscience and he is there for the patient too.
What now? In the immediate sense this morning we are supposed to get a phone call from a technician we have learned is decent: Diana is her name and she will set up a series of appointments where the Admiral has a port put into his chest, learns about chemotherapy and then begins it. It’s twice a week for a week and then two weeks off, and then repeat. Four hours or so while you are there. Then you have to take care of yourself — with instructions I’m sure.
I have two phone calls to make. Caroline told me about Rob’s oncologist who had been his father’s — remember reader Rob has colon cancer; I had not told you his father has had cancer three times and three operations, two drastic. I will phone and try to get an appointment for a second opinion. I know I will have to leave a message and may have to wait and not get a call back or when the doctor (or then a substitute to shield her) sends back a message it will be to say no, she is too full up, or not a Kaiser person. But the name of a previous or present patient may help. I will ask this doctor if she is connected to Kaiser in any way if I like her and feel any trust. I can also ask about things — as I do Wiltz. For example, what is the chemotherapy expected to do? Can it cure? does it ever cure liver cancer? Does it prolong life? at what cost of pain and misery and humiliation (the way the person starts to look, hairless and so on.) Does she have another regimen. I will bring list of queries if I can get an appointment.
I have had the experience with Yvette that taught me that Kaiser punishes organizations which they do not want to fund a specific service from for giving the patient that service even if the patient paid. Kaiser refused to fund the services of the Jewish Social Service Agency for Yvette’s Aspergers. At first the people there refused to let us come and it came out they feared retribution.
Gentle reader, this is how capitalism and the medical community works.
I will also call Dr Nasr. Last week Antabili wanted to do the radiation as it was on her charts as what she was supposed to do. Now she said on the phone that she would phone Nasr (or had phoned him, it was not clear) and tell him no radiation. It’s not done now.
The admiral has read on line that in certain cases where the configuration of the metasisis is on one side of the liver, radiation can help. It can perhaps burn the cancer off. The admiral thought it’s no use to phone Nasr as he will know that Kaiser will not pay for his services if Antabili says they don’t need Nasr. I have to try to leave a message. It may be he too will fear retribution — even if I offer to pay, or all the more if I offer to pay myself, he may not want to risk displeasing Kaiser. They send him a lot of patients, and he clearly makes a lot of money. He too an international — not born in the US.
So this is where we are. What do I think of these medical people and their ways? This would have to take into account the millions of people who have suffered badly either as patients emotionally and physically or as buyers been bankrupted or kept poor making payments for years (or risk a debt collecting agency hounding them). I will write separately about this eventually.
A book I used to assign to my students, Singular Intimacy by Danielle Ofri has gotten me onto her list of email correspondents. She somehow learned I ordered it in lots of 50 a few times. We corresponded and I know she keeps up her Bellevue Review and has written another book. From time to time she publishes (careful, discreet) but candid and intelligent humane articles. So for now read this one: The doctor will see your electronic medical record now.
I shall probably have to cancel my paper on Anne Finch (on her retirement). I will try to do the promised paper on Davies’s film adaptations of Trollope and the reviews (on Burney &c) — if only to keep my mind busy and occupied when I have nothing to do outside the Admiral and keeping up our life as far as it exists now.
It’s may be over for both of us, gentle reader. Meaning the adventure of life. Che faro spenza il mio ben? (Gluck, Orpheus of his Eurydice, me of my darling.) My beloved is in bed now sleeping with the two cats. He is sweating now. Belching quietly. I just got up and got him a glass of water. I would do anything I could to give him more months of life, years but he has said to me more than once “don’t let them hurt me” (implied for no good to me whatever it satisfies anyone in the medical establishment’s needs). Remember a pill is a nifty sale, an operation a big profit in this USA, a big income the American dream; if a doctor tells an underling to do something he or she had better do it.