When I consider how my light is spent
Ere half my days in this dark world and wide,
And that one Talent which is death to hide
Lodged with me useless, though my soul more bent
To serve therewith my Maker, and present
My true account, lest He returning chide,
"Doth God exact day-labour, light denied?"
I fondly ask. But Patience, to prevent
That murmur, soon replies, "God doth not need
Either man's work or his own gifts. Who best
Bear his mild yoke, they serve him best. His state
Is kingly: thousands at his bidding speed,
And post o'er land and ocean without rest;
They also serve who only stand and wait.
John Milton, “On His Blindness”
It’s been an odd summer at Defeatist Central. In the last few years, we’d have gone crazy with lots of stuff about how horrible the politicians, economy and so on have become. However, not unlike a lot of other bloggers, we’ve become strangely quiet. Is it because, as in the case of Mr. Fun, we are frustrated because once you go Pek you can’t go back and no Pony has arrived? Perhaps because of the arrival of Defeatist Babies while we mourn the departure of beloved Defeatist Pets? Is it perhaps because of more mundane concerns? Or, maybe greater concerns? Who knows what ennui and disinterest lurk in the hearts of men? Well, besides Yeats, of course….but I quote him often enough.
For me, it’s been an odd time. Mrs. AXE came home one day and announced that she wanted to retire from Federal Service because she was old and because she was working for complete assholes. Well, that was fine with me; I did some math and said, OK we’ll be fine. She then went through some totally unnecessary hassles over insurance coverage for some tests, submitted her paperwork, got the tests in early March and retired on the 31st. That afternoon, we got the diagnosis – colon cancer with fairly large polyps that probably had breeched the walls of the colon. On April 20, they did the surgery. The surgeon said it went very well; on the following Tuesday, I got a call at 10PM saying they were taking her to emergency surgery because of complications; when I got there, she greeted me by crying “Goodbye…” Now, by nature I am not a nurturing type; my response was fairly unemotional and probably helped in this case – “Really? I don’t think so unless you know something I don’t.” The surgery went well – there had been an obstruction and the surgeon took out three feet of small intestine that was gangrenous. To allow everything to heal, he performed a temporary Ileostomy, that is, a procedure to route the small intestine to a sack outside the body. When she was healed, they would reattach the plumbing. In the meantime, she’d start with an oncologist and see if Chemo was the next step.
Except it didn’t work that way. The original hospital could not find a way to install an ostomy bag that would work; while she stayed there for three weeks, she spent a large part of that covered from the top of her abdomen to her groin covered in her own feces and stomach acid. The hospital staff was fatalistic and resigned; I was rapidly getting angrier – nuture, no. Defend, protect and raise hell, yeah…I can do that. Their solution was to send her home despite the leakage problem and figure that the home health care provider would be able to figure it out. I raised hell, the surgeon came by to see what the problem was and he reacted about as badly as I did. The next day, she was transferred to a new place, a “long term acute care” hospital. Exit surgeon, stage left, pursued by a bear.
Now, the surgeon was confused as to why the staff at the hospital was having so many problems. There are a variety of Ostomy suppliers producing supplies that work for some or most results of the surgery. However, each surgery is different, and each person is different. In the wife’s case, well, her Stoma (the intestine jutting through the skin) was a convex stoma, meaning it did not extend above the the skin. Silly me – I thought that for something this fraught with potential issues, Medical Science would have perfected a way to cap and channel the material flowing instead of basically trying to extend a sewer cutoff. Well, it’s not even close. It’s probably possible to fabricate a fairly good ostomy bag with some spackling compound and a good freezer bag.
Why do that? Why not get the right stuff – not surprisingly, the hospitals are under pressure to sign exclusive agreements for a lot of medical supplies and apparatus as well as drugs as a cost control measure. By dealing directly with the supplier, they can get the best price which makes the insurance company happy; however, it may not be what the patient needs. Tough shit…in this case, literally.
What the hell is a long term acute care hospital? Regular acute care hospitals have an average stay of about 3 days for patients. If the patient stays there too long, regardless of medical necessity for care, the hospital will face complaints from the Insurance Companies. Are we starting to notice a theme here?
Now, the long term acute care hospital was about 75 miles away from the house. I got down there every other day, and for the most part they took excellent care of her. However, they are a for-profit hospital, and skimped on some things. It seemed that there was a constant battle between the wound care and physical therapy folks versus the ward staff. It was not uncommon for me to arrive and discover that she had been left sitting in a bed pan for a half hour or so, or that no one had come to give her the bed pan…I got quite good at helping install the bags, and actually helped resolve some of the issues with the types of bags they had. However, this hospital had the type of relationship with the insurers – in my wife’s case, Medicare and Tricare for life – that they could get what they needed, regardless of manufacturer.
Ultimately, they felt she no longer needed the level of care afforded by the acute care side of the health care system. I was told that they wanted to transfer her to a “skilled nursing facility” and had me check a few out in a “Renters Guide” sort of magazine. Too were closer but one did not have an RN on staff 24 hours a day and was primarily an old folks home. Because my wife needed IV fluids and feeding at this point, they couldn’ take her. However, there was a large facility near the original hospital. So, she was transferred there.
Now, the wound care team had given me a kit to take home of the sorts of bags, powders, adhesives and sprays that they had found worked with my wife. Remember, the use of ostomies is common, but they are all kind of custom. The staff at the new place ignored me and when what they were doing didn’t work, freaked out. One nurse was exceptional in her efforts and I’d do just about anything I could for her; the rest were absolute idiots. However, this was a doomed place – I refer to it as a “storage and disposal facility” or “ a human rendering factory.” I was there every day…I was rare. It was not a healthy environment for someone who was not dying.
Ultimately, all the good work that the second facility had done was undone by these people. The problem of course is that what they would refer to as a rash was really burns….because the food was coming from the small intestine to the stoma – the hunk of intestine pulled through the skin to drain into a bag—she was re-injuring the skin damaged by the same fluids at the first hospital. Now, they had an excuse, albeit a terrible one. These people, not so much. What they were doing had been proved not to work. But, they kept doing it anyway until finally, after a lot of her pain and her embarrassment, they accepted that they were unable to deal with this simple procedure. They decided to send her to see the original surgeon and see what he thought about it being time to reverse the procedure. Great…however, they ultimately decided that they just needed to send her to that hospital’s emergency room because they were totally incompetent to handle the situation. And so they tried, the day prior to when she was supposed to be taken to see the surgeon. You see, hospital emergency rooms are overwhelmed by poor people who have no insurance and for whom a visit to their family doctor. That hospital was overwhelmed in the emergency room. So, they sent her to another private, non-profit hospital. They told me about it a couple of hours after she’d departed, which I thought was just special.
Anyway, I joined her about 4PM (1600 in real military time.) The chief surgeon came by, talked with us briefly, said that he wasn’t going to operate on her in the condition she was in -- burned, dehydrated, weak but would admit her so that she could recover enough for the surgery to correct the original resection either by reconnecting the plumbing or revising the outlet, so to speak. She was taken to the surgical ward, and the wound care and ward team immediately took care of her. Since she was given an IV shot of morphine because of the intense pain, I left by 6 when she went to sleep. When I returned the next day about noon, she was awake, and the bags that they were using did not leak. At all – she never had a leak there. She recovered enough that the operation was performed on Friday. She took about a week in the hospital post op, and then was released to home care.
Since she’s returned to her home, her stuff, her cats she’s made great improvements. I’m amazed at how well she’s doing. I had a Facebook Entry the next evening that she had finally been released from incarceration…err, hospitalization, and was already being a pain in the ass. She now is able to get around quite well with the walker, and I forced her to make her own tuna sandwich for dinner. She is eating reasonably now and even made her own tuna sandwich the other day. All’s well that end’s well, right, AXE? No, fuck you.
You see, I’m not totally happy about this. When she was diagnosed, the cancer was quite large and probably had penetrated the wall of the colon. Colon cancer discovered during colonoscopy and taken out in biopsy, basically minor problem. Colon cancer discovered during colonoscopy and removed followed after recovery by chemo, not a minor problem but not terribly threatening. However, colon cancer that has penetrated the outer wall of the colon and spread or where chemo is delayed or refused by the patient, major problem. The original timeline was colon resection, return home in a week or less, follow-up in two weeks, referral to Oncologist, begin course of treatment. Now, we have had an extra 14 weeks plugged into the equation. But, she is now in a helluva lot less pain, she has some quality of life and dignity and has made her own decisions. Good for her.
Next, for those who’ve been following my writing for a few years, you may recall that at one time I was struggling existentially between a significant other and my spouse. I ultimately chose the easiest route because they were both crazy. Well, the gal I was so interested in and loved a few years ago and still do love, had a horrible bout of colon cancer in 2003. She was actually told that “we’re going to operate but you need to get your affairs in order…” Did I mention that she was a Lieutenant Commander in the Navy and a Navy Nurse? Her sister was also a nurse, only a return boater to Ireland; her parents were both immigrants in the 40s; her sister and her husband had decided that New York City was no place to raise kids and had returned to Eire, I believe outside of Cork but I could be wrong. My friend was a triathlete and a serious marathoner; her sister won awards as an athlete in her county as late as 2004. In early 2006, she died from colon cancer. My friend was able to be there when her sister passed; she had some fairly funny stories about the way the staff of the hospital handled the dying process. But, she also felt a great deal of guilt – you see, when the significant other got the word about her cancer, the only family member she informed was her sister, Kathleen, who caught a redeye from Shannon to the US and on to San Diego to be there for her kid sister when she went into the surgery. She knows that Kathleen couldn’t catch colon cancer from her; but, there is still an incredible feeling of guilt. I am stunned by the irony…
Another thing I’m keeping in mind is the problem of the economics of healthcare. Now, I spent 23 years in the Army, and am grateful every day for that experience. I am incredibly grateful for Tricare and in the case of my wife, Tricare for Life. I know that the total bill for this great time up until now will be well into six figures; in fact, it already is. My total financial liability at this point has been $58 that I probably could have gotten out of paying. Now, we earned this; we paid for the Medicare in her payroll Medicare taxes and the part B in cash prior to starting to take her Social Security benefit and now in deduction from her benefit. But, talk about value; and yet, we know that the current healthcare situation is abysmal in this country and we know that we’re faced with the possibility of it becoming worse. The GAO has released estimates that because of the Supreme Court’s decision that the states do not have to extend Medicare as required originally by the Affordable Health Care Act, at least 3 Million People who would have been covered under the Act will not be covered. Which means that if they become as sick as my wife, they will go bankrupt and they will die. And Republcian voters will cheer as they cheered Ron Paul…
Well, we all are going to die, but there should be some degree of human dignity in the situation. But, we don’t seem, as a nation, to get it. The people most at risk are working class Americans without adequate health care insurance. And, there is absolutely no reason for this. I find the fact that France, Canada, the UK and my beloved Ireland have far better health care systems by any objective standard than we do to be a national disgrace. I am ashamed when I try to explain it to people from other countries that are supposedly not as great as we are. No Patriotic American should be able to stand this shame. So, those who oppose continued reform are what…un-American?
Remember Death Panels? There are death panels under the current system – they’re the insurance companies who determine what they will cover and what they will not based solely on market decisions. They are the insurance companies that raise rates so that people are no longer able to buy insurance or must cut back and buy only for the breadwinner as opposed for their whole family. These may be decisions made by the Marketplace (rigged, corrupt and based on debased values, where it’s reasonable for Ann Romney’s horse to be worth more than the annual tuition for 20 college students at a mediocre college.) However, from a human perspective, these results condemn those decisions. No, these are the decisions forced by fate on Frank McCourt’s mother Angela, whether to care for her family or take food from their mouths so that she has enough to survive. Hey, it’s a market decision. Compromise is a satanic thing here, because you’re dealing not with a possible win/win but with definite lose/lose. This was not acceptable in Ireland in the 30s and 40s and shames that Catholic nation as much as the Magdalenes Sisters, the history of betrayal to the British empire, and the current economic crisis even today. IT CANNOT BE ACCEPTABLE TO ANY AMERICAN NOW. NO FUCKING WAY! USA!USA!USA!
And, yet it is. If Mitch McConnell gets an unfortunate pimple on his ass, he can go to Bethesda and the entire United States Navy is mobilized to handle his departure from the norm. Hey, a pimple on the ass of the worst American Senator since Joe McCarthy is a really bad thing. But, most people in this country, insured or not, unable to pursue that kind of treatment. If Mitt Romney wakes up with the sniffles and an odd growth on his dick, he can afford to endow his own wing of a hospital to handle sniffling dick growths. Why should a man who builds elevators in his house for his cars concern himself with the health care of some poor kid in Harlem? It’s God’s will…
It’s not that these men are inherently evil. (Well, I think they are, but let’s assume they’re not.) They lack imagination and empathy for those who they see as not quite up to their standards of wealth, power and connection. Somehow, they’re not quite up to God’s standard. The market does the will of God so if you’re not able to hedge your bets and profit from the misfortune of others, you deserve to be poor, wretched and sick.
You know, it’s one thing for Milton to accept his blindness as the will of God and see that as it is God’s will, it’s a good thing. It’s a totally different thing to see someone else’s horror, pain and suffering as the will of God. That’s not stoic acceptance of the Almighty’s will – Stoicism is about your relationship with the world, not that of others! And, if the idea is that by not paying taxes at a reasonable rate in an industrial democracy you can accrue unconscionable wealth, you are doing what God wants, you are deranged, or you worship neither Jesus, nor Yahweh, nor Buddha, nor Allah nor Vishnu but eternally damned CTHULHU or Satan. Willard Romney and and Turtle McConnell and the Paulline Faillacy and John Boehner are tools of Evil and the Republican Party is the Party of the Rich, the Party of the Evil, the Party of the Ignorant and ultimately, the PARTY OF SATAN.
Ok, that’s a little rich, even for me. But then, I profess that the arbitrary decisions of the universe about life, death and the baseball game speak to the underlying problem of God – there is no God, or God is an evil sonofabitch with a nasty sense of humor, or God is really a teenage girl with lots of behavioral and emotional problems that, since we’re not her parents, we should try to stay away from lest she do something awful to us. I feel guilty when I see a beggar and I don’t stop; in my idea of America, there are no beggars, no homeless, no hungry – this experience with my wife underlies for me the importance of the America as champion of a world dreamed of by Franklin Roosevelt and expressed so eloquently in his Four Freedoms.
In the future days, which we seek to make secure, we look forward to a world founded upon four essential human freedoms.
The first is freedom of speech and expression -- everywhere in the world.
The second is freedom of every person to worship God in his own way -- everywhere in the world.
The third is freedom from want, which, translated into world terms, means economic understandings which will secure to every nation a healthy peacetime life for its inhabitants -- everywhere in the world.
The fourth is freedom from fear, which, translated into world terms, means a world-wide reduction of armaments to such a point and in such a thorough fashion that no nation will be in a position to commit an act of physical aggression against any neighbor -- anywhere in the world.
That is no vision of a distant millennium. It is a definite basis for a kind of world attainable in our own time and generation. That kind of world is the very antithesis of the so-called 'new order' of tyranny which the dictators seek to create with the crash of a bomb.
Franklin D. Roosevelt
STATE OF THE UNION ADDRESS, January 6 1941