Showing posts with label Healthcare. Show all posts
Showing posts with label Healthcare. Show all posts

Saturday, October 5, 2013


We've gone through a week of hell, a slight cough precipitating an X-Ray which revealed, as I had expected, an old pleurisy scar from my college days.  But that is just the beginning.

Ah, those college days when we thought time was a personal continuum, guaranteed to last forever, and so we did whatever we liked, reckless things at times.  I was studying for finals in my Sophomore year and the dormitory was ablaze with late night studying, frequently with the help of NoDoze, strong coffee (or caffeinated tea in my case) and a cigarette burning from my lips or ashtray.  We were on a caffeine induced self-perpetuating high -- a contest of how long we could stay up, and memorize for those tests, walking around like zombies and proud of it.

After finals I collapsed and developed pleurisy -- in fact a very serious case -- and I was brought over to the Brooklyn Hospital, put in a ward with some twenty other patients, and had a female pulmonologist assigned to me (unusual in those days).  I never forgot her name as I found it almost comical: Dr. LafLoofy.  She tested me for, among other things, Tuberculosis, and suspected I had some form of it, but never confirmed though.  But the pleurisy was her main concern as I could hardly breathe and the pain was almost intolerable.  I was given dosages of antibiotics or penicillin, vintage 1960's, and they were even considering drilling a hole in my back to extract fluid, but it never came to that.  The worst pain came from coughing or laughing.  Visitors were told not to make me laugh and all would arrive with such somber faces that I would immediately burst out laughing, then howl with pain, as they quickly but still somberly retreated.  No more visitors for me.

So I spent two weeks in the ward, while the medications did their job.  My companion most of the time was Theodore Dreiser's "Cooperwood Trilogy."  It seemed like such a perfect piece of literary work to consume during my infirmary.

When I finally emerged from the hospital, I swore off all-nighters, took a little better care of myself, but I was right back smoking, and continued to smoke a pack to a pack and a half for the next 13 years.  I had smoked three years before, so that's 16 years of smoking plus both my parents smoked and our house and car were always a blue haze of smoke.  Those were simply the days when everyone smoked.

Fast forward to this past week.  So, when my slight cough could not be explained, my Internist took an X-Ray which to no one's surprise revealed that old pleurisy scar from a half century before.  That being explained, he put me on an antibiotic, but the following morning he called me to say that he decided to compare my current X-ray to one taken two years ago as a precaution. He thought he saw a change in that scar and thus a CAT Scan was ordered.  He called the next day with scary results; I had an 18x18x23mm mass in the upper left lobe, partially calcified.  This was completely unrelated to my pleurisy scar, so it was considered an "incidental finding."  I was referred to one of the top thoracic surgeons in the area.  We were stunned.

The anxiety level for me and my wife started to go off the scale.  I probably spent most of that day on the Web reviewing the sad, gory details about lung cancer, something with which I was already familiar as one of my best friends, Howard, died of the disease at only 62 and I know what he went through.  It has to be one of the worst cancer deaths, surgery, radiation, and chemo, mostly ending in limited life spans.  What's the point I thought?

The first appointment I could get with the surgeon was not until the following Tuesday, a wait of four nerve wracking days.  Before all this began, Ann had already left to attend a Jane Austen Society of North America convention in Minneapolis, where I insisted she stay, so I was alone for those four days to do more research which only resulted in more anxiety and the need for accepting whatever fate was about to throw at me. 

It occurred to me that as I handle all investments and bill paying, running the house, my poor wife could be left with a quagmire so I spent a good part of this time, piecing things together, trying to put together a coherent document for her.  In effect, I was doing that hackneyed phrase of "getting my affairs in order."  I was preparing for the worst, hoping for the best, but getting done now what I might not be able to once operations and/or treatments began.  I even reviewed our Trust documents, found questions regarding that, and made a list to discuss with the firm that would become the trustee.  Luckily, friends were around to have dinner with, so there was some diversionary activity, but when I returned to the quiet house at night, dark thoughts interceded.

Finally, Ann returned home last Monday night and so, together, began a week of Doctors' visits, testing, and anxiety.  The surgeon reviewed the Cat Scan with us and was brutally frank in his assessment: it most definitely appears to be cancerous and because of its location and my prior thoracic battle with open heartsurgery, made it unlikely that I would survive the "gold standard" surgical operation of removing the mass.  His recommendation was the "Cyberknife" alternative, a remarkably non-invasive method of "cutting" out the tumor with high dosages of radiation that are aimed directly at the tumor from multiple angles. 

I wondered why everyone would not opt for that treatment, but I suppose the gold standard of surgical removal is "gold" for a good reason.  He explained that when a needle biopsy is done through my back and into the lung, the radiologist would leave a fiducal marker which would be used as a target for the radiation treatment.  As anyone can imagine, we left his office reeling with fear and dread.

First, though, he ordered a PET Scan which I had to prepare for, hoping that it would not reveal any other cancers in my body.  Preparation included not eating any foods with carbs or sugars the day before and then fasting the day of the procedure. The afternoon of the PET Scan I was injected with radioactive isotopes (with their caution that I can't be near children or small pets for six hours afterwards because I would be emitting radiation).  After injection, I had to go into a dark "quiet room" so the radioisotopes could be fully absorbed by my body.  Nearly an hour later, I was led into a room with a long, narrow tube where a full body PET scan and CT was  performed, and had to lie perfectly still in this confined space for a half an hour.  Given what I was likely to go through afterwards during the next several weeks, I thought this a piece of cake.

The following morning, we had to pick up the PET Scan (all images on a disk of course) as well as a radiologist's written report to give to my surgeon with whom we had an appointment only 20 minutes later.  Naturally, we opened the report in the car beforehand, looking for any sign of malignancies elsewhere in my body.  Hooray, there appeared to be none, but reference of course was made to the tumor in my upper left lobe.

So, we arrived at the surgeon's with a list of questions regarding the biopsy, the need for a marker (collapsed lung is frequently the consequence of fiducial markers), the timing of all of this (Ann had a trip to Africa planned which she was planning to cancel that very day), when treatments would begin, the required follow-ups, and of course the prognosis.

When the surgeon and his nurse entered the room, I told him we had peeked at the report, was thrilled there was nothing else, and then started to ask him about the biopsy.  He said, what biopsy, the tumor is benign, that the Pet Scan clearly showed that.  We were stunned.  What?  Huh?  No, he said, the scan showed there were no active cancers.  We had won the lottery he was glad to report (no apologies about his prior certainty that it was cancerous).  Unfortunately, we did not recognize the "doctor speak" when reading the PET Scan report. Phrases referring to the mass --- such as "this is grossly stable; no abnormal uptake is identified" were key, identifying no active cancer, no need for a biopsy at this stage, and only a CAT Scan follow up in 6 months. The tumor might be an old TB granuloma (my speculation), and if so the likelihood that it will become active after all these years is slim to none.

We left his office both stunned and elated, hugging and dancing in the parking lot of the medical office, shocked at this totally unexpected piece of good news.  But the whole experience left me with renewed appreciation of the struggles of any cancer patient and I remember friends such as Peter, Lindy, and Howard, all of whom died of the disease, and of course my own father who had perhaps the worst, pancreatic cancer.  My friend Jeremy (one of Peter's sons) had pancreatic cancer but it was the type that could be addressed by the radical Whipple surgery.  He went through hell, and as a relatively young man, but survived.  It was the same kind of pancreatic cancer Steve Jobs had but who, instead, chose a naturopathic route.

Luckily, we hadn't told the world about the "fact" that I had lung cancer.  We wanted more details from the biopsy first. Nevertheless there were a handful of friends, and of course our sons, who knew what we were going through.  Support is such an essential element in facing this dreaded disease so we thought we would bring a few into our beginning nightmare.  To those we involved in this tale early on, thank you for your emotional support, and we're sorry you, too, were taken on such a distressing emotional ride.

I had but a brief glimpse into the emotional path cancer patients have to walk -- into a void of fear and unknowns that the medical community might be inured to, but not the patients and their loved ones.  I was certain I had read something very profound on that very topic and discovered that a few years ago I had already quoted it in my blog, but it bears repeating here.  It was written by John Updike in his Widows of Eastwick, towards the end of his own life and only one who has walked the walk could have written this (in the novel, Jim has cancer): Jim's illness drove her [Alexandra] and Jim down from safe, arty Taos into the wider society, the valleys of the ailing, a vast herd moving like stampeded bison toward the killing cliff. The socialization forced upon her -- interviews with doctors, most of them unsettlingly young; encounters with nurses, demanded merciful attentions the hospitalized patient was too manly and depressed to ask for himself; commiseration with others in her condition, soon-to-be widows and widowers she would have shunned on the street but now, in these antiseptic hallways, embraced with shared tears -- prepared her for travel in the company of strangers

Briefly I had thought that was to be my own fate, and, just as worse, Ann's, but thankfully not yet.

Wednesday, January 16, 2013

Brave New World of Medical Technology

Lucky me, I have a pacemaker.  Actually, very lucky as when I was fifty four I was running around the office one day, feeling a little dizzy, but going about my business, preparing to get on an overseas flight to the Frankfurt Bookfair, and my wise wife forced me to see my doctor before we departed (she was going with me). My doctor took an EKG and looked startled, saying that my heart was beating at only 30 BPM.  I should have passed out long ago and he wondered how I was able to get through the day.  So I said, isn't there a pill I can take, I have to be in Frankfurt tomorrow. He replied, the only place you're going is to the ER.  Had I gotten on that plane, ignoring the symptom, I was told I would have died.  So, lucky me, indeed.

After ER, I was admitted to the cardiac unit and they thought I had an advanced form of Lyme Disease, which can attack the heart's electrical conduction system. I was put on heavy duty antibiotics and meanwhile they warned me that if my heartbeat dropped below 30, I'd have to have a temporary pacemaker wired through my neck.  That evening a team of medical personal came bursting into my room, monitors beeping, indicating my heartbeat had dropped to 28-29.  Look, I said, I'm conscious.  Please don't put a temporary pacemaker in unless it drops further.  So they watched me that night and I was at least stable.

After almost a week of medical treatment, and no improvement of my condition, a cardiologist informed me they would be prepping me for a permanent pacemaker the following day.  They had no idea why, at my age, my electrical system was failing.  Lousy genes they speculated (a favorite explanation offered by medical personal when they have no clue). So, into the operating theater I was wheeled and was told I'd be sedated but hazily conscious as the surgeon would have to ask me questions as he placed the leads into the heart.  A representative of the pacemaker manufacturer was present and I remember he and the surgeon joking during the procedure.  The surgeon said this is a piece of cake as he's relatively young and in good shape so I piped up, I ought to qualify for a discount then!  Fat chance he replied.

In any case, I have lived with a pacemaker, now, for sixteen years.  Actually, I'm now on my third such device as when the battery runs low, it's not like replacing a couple of double A's.  A new pacemaker has to be inserted in my chest. 

I know, it's an awful looking picture, but that's what my chest looked like five days after getting the last one.  It actually looks worse than it felt.

My third generation pacemaker is high tech.  The older devices needed monitoring, usually in the cardiologist's office.  But now the monitoring is done remotely, as the pacemaker transmits the information wirelessly to a receiver that sits by our bed, one that is plugged into our phone system, and it dials out the data as I sleep.  Every three months if does a "pacemaker interrogation" the same one I had in the office and transmits the data (it will also send data immediately if it detects any serious irregularity such as a ventricular tachycardia).  Our phone system is now digital, so the information goes out via our cable company's broadband.

But wait, more high tech.  Our telephone answering service is provided by the cable company as well; not only are messages recorded, they are transcribed using voice recognition, and then sent to me via email.

And yesterday I received the following email:

From: Voice
Sent: Tuesday, January 15, 2013 1:04 PM
Subject: You have a new Voicemail

    "Hello this is your implanted cardiac device clinic calling to let you know we received your follow up data and it looks normal. We look forward to your next appointment. Thank you and goodbye."

Thus, from an implanted pacemaker with a computer chip transmitting on a proprietary band, to a receiver that dials out via broadband to a computer that analyzes the data and, if normal, then places an automated call which is recorded and then transcribed via voice recognition, finally being emailed back to me.  A full circle without human interaction!

Any sufficiently advanced technology is indistinguishable from magic.....Arthur C. Clarke

But there are serious issues with all this technology, both positive and negative.  My pacemaker is transmitting at all times.  Anyone within 10 feet knowing the frequency and having the right equipment, in a public place, can have access to the data which raises privacy issues.  I have no problem with that but it also means that same person would have the ability to reset or even disable the pacemaker.  Pacemaker (and implantable cardioverter-defibrillator) manufactures say that is nearly impossible, but it seems to me that almost any "techno-magic" is feasible today.

Thinking more macro-medical technology, we have the ability to build a national database of medical information, at least for Medicare recipients, that would obviate the endless duplication of medical record keeping for the same patient at multiple health care facilities and doctors' offices.  Again, privacy issues have been a stumbling block, but imagine the significant cost savings (and improvement of data accuracy).  I have less concern about the privacy issues than I do about rising health costs and the burden it puts on taxpayers.  Surely there is a techno-magic means of satisfactorily addressing the matter.

Sunday, December 6, 2009

Pull Up! Pull Up!

Like many people, I feel disillusioned by the first year of Obama’s Presidency. This is probably more my problem as he is a mere mortal and inherited so many crises, long time in the making, deeply ingrained, that he would have to be Superman, flying around the world to turn back the clock of time, to undo faulty foreign policies, reconnect the dollar to some form of the gold standard, change the unrealistic long term promises of Medicare and Social Security, roll back the deregulation of our financial institutions, and I could go on and on, but you get the picture of, perhaps, a society in a spiraling decline. Despite our cries of “Pull up! Pull up!” the ground closes in.

I still think the President could have devoted more of his first year to policies addressing what I called a “new economic morality.” Instead, he had focused more on healthcare, not that that is not also important. But Main Street seems to have been sacrificed at the altar of Wall Street and we are angry. Who truly believes the economic crisis is solved rather than being merely postponed? Let another generation deal with it, the same response of previous administrations. How long can we kick the proverbial can down the road? What kind of healthcare can this nation have if it is bankrupt?

So, I confess, I got caught up in “the dream,” the fantasy that one man, Mr. Obama, could make such a huge difference and in such a short time. I’ve been chastened by disillusion. The extent of my buying into the dream at the time is borne out by an email I had sent to a friend, a mother of a young family, suggesting she read my then recent blog entry. I quote this is below, and I conclude with that entire entry:

“Did you enjoy the inauguration? To me, it was one of those great moments in American history, and I am glad to have been around to witness it and not just read about it. What Obama does with this opportunity, is anyone’s guess but I pray it turns out well for your children’s sake and for those of my grandchildren, if I should be so lucky.

I had an interesting experience the day before the inauguration, Martin Luther King Jr.’s birthday. First, I was plagued by dreams so I got up at about 5.00 am and began to write in my blog. It just flowed as if someone else was writing it. I usually don’t post stuff I write until I have time to ruminate about the piece and do some editing, but that morning was different. So here is what I wrote:

After posting this, I went out for my usual walk as the sun was rising, wearing my radio earpiece. The station was playing the famous Martin Luther King, Jr. speech, “I Have a Dream.” What a magnificent, poignant rhetorical piece, so apt on the eve of this particular Inauguration day. I had forgotten its details (although I watched it live in 1963). So as I walked, I listened, and suddenly in the western sky, with the rising sun, a broad, magnificent rainbow appeared. It deepened during my entire walk and as King’s speech ended it faded (I could get spiritual over this).”

Monday, January 19, 2009
Early in the Morning
It is early in the morning on the eve of President-elect Obama’s inauguration – in fact very early, another restless night. When it is so early and still outside, sound travels and I can hear the CSX freight train in the distance, its deep-throated rumbling and horn warning the few cars out on the road at the numerous crossings nearby.

Perhaps subconsciously my sleeplessness on this, the celebration of Martin Luther King’s birthday, relates to the incongruous dreamlike images of the bookends of my political consciousness, from the Little Rock desegregation crisis of 1957, the freedom marches that culminated with the march on Washington in 1963 and Martin Luther King’s historic "I Have a Dream" speech, to the inauguration tomorrow of our first Afro-American President. All this breathtaking demonstration of profound social change in just my lifetime.

Much has now been said comparing Obama to Lincoln. In my “open letter” to Obama that I published here last May I said “Your opponents have criticized your limited political experience, making it one of their main issues in attacking your candidacy. Lincoln too was relatively inexperienced, something he made to work to his advantage. Forge cooperation across the aisle in congress, creating your own ‘team of rivals’ as Doris Kearns Goodwin described his cabinet in her marvelous civil war history.”

The Lincoln comparison is now omnipresent in the press, not to mention his cabinet selections indeed being a team of rivals. But I am restless because of what faces this, the very administration I had hoped for: a crisis of values as much as it is an economic one. The two are inextricably intertwined.

I am reading an unusual novel by one of my favorite authors, John Updike, Terrorist. One of the main characters, Jack Levy laments: “My grandfather thought capitalism was doomed, destined to get more and more oppressive until the proletariat stormed the barricades and set up the worker’ paradise. But that didn’t happen; the capitalists were too clever or the proletariat too dumb. To be on the safe side, they changed the label ‘capitalism’ to read ‘free enterprise,’ but it was still too much dog-eat-dog. Too many losers, and the winners winning too big. But if you don’t let the dogs fight it out, they’ll sleep all day in the kennel. The basic problem the way I see it is, society tries to be decent, and decency cuts no ice in the state of nature. No ice whatsoever. We should all go back to being hunter-gathers, with a hundred-percent employment rate, and a healthy amount of starvation.”

The winners in this economy were not only the capitalists, the real creators of jobs due to hard work and innovation, but the even bigger winners: the financial masters of the universe who learned to leverage financial instruments with the blessings of a government that nurtured the thievery of the public good through deregulation, ineptitude, and political amorality. This gave rise to a whole generation of pseudo capitalists, people who “cashed in” on the system, bankers and brokers and “financial engineers” who dreamt up lethal structures based on leverage and then selling those instruments to an unsuspecting public, a public that entrusted the government to be vigilant so the likes of a Bernie Madoff could not prosper for untold years. Until we revere the real innovators of capitalism, the entrepreneurs who actually create things, ideas, jobs, our financial system will continue to seize up. That is the challenge for the Obama administration – a new economic morality.

It is still early in the morning as I finish this but the sun is rising and I’m going out for my morning walk. Another freight train is rumbling in the distance. I hear America singing.