Dropping Out

This is a bit out of character for me, but I’m thinking of dropping out.

You know:  it the 1960s the youth would drop out, grow their hair long (if a guy) and travel around the country in a VW bus – that sort of thing.  Dropping out, of course, can be less exotic, and here I am thinking of high school drop outs who have just had enough of Trig, and “when will I ever use that?”

But I’m thinking of dropping out in my own peculiar Stahl way.

I’m thinking of dropping out of what I refer to as the Medical Industrial Complex.

I ask you:  what would happen if I just never went back?  The plan is now to re-scan in six weeks and, if the thing in my side has grown, then to do yet another biopsy which will in all likelihood lead to more inconclusive conclusions and we-are-hedging-our-bets but it very well may be cancer unless it is not, and the biopsy is always conclusive except when it isn’t (yes, in the Spring I had an inconclusive biopsy which landed me in an operation to remove four lymph nodes, all non-cancerous), and did you know that if the biopsy is negative, they will never come right out and say there’s no cancer;  no, they will say it may not be cancer but then again we just didn’t hit it, so once again you, the patient, are left with mush.

I wish not to complain.

They have saved my life time and again, that much is true.  I am a miracle, and that is also true.  I am very thankful for every one of my doctors (except the one who almost killed me) – that is also true.

You would think reading a scan would be like reading a blueprint, so if a big line is over to the right, we can with some certainly call that a load bearing beam.  This last go-around the nurse called me early on a Monday morning and told me the CT scan showed four spots in my lower left lobe.  That was not good.   When I talked to another nurse a week later after the PET scan, it had suddenly changed:  now I had a spot on my left side and one in my lower left lobe.  It is true.  The plot thickened when we went to Roswell and the surgeon told us there was nothing in my lower left lobe but definitely something on my side.  OK.   We later met with the oncologist at Roswell who changed the party line and said there was also a thickening above the spot on my side, so that should be considered cancer.  Two spots, not one.  It was in the plura, they said, the area that encases the chest cavity.   (Heck, three weeks ago I didn’t even know I had a plura!  Now I knew.)  Well, we later talked with the radiologist, who said, no, it really wasn’t in the plura but more in the lung, straddling the lower lobe and the upper lobe.

I ask you:  where is my cancer that turned out not to be cancer?

So, I am left with a tumor marker that is going through the roof but no tumor (well, a benign tumor but that doesn’t count).  They are all concerned, because normal CEA is 2.5 but mine had incrementally jumped to from 30 to 60 last spring when something had to be done, and lots was done with no tumor uncovered.  You can go home, they said, and I did.  Test it in September, they said, and we did: my CEA was 330.  The sirens are wailing.  Tests and more tests.  It has to be cancerous, and everything falls into place perfectly if the thing on my side is in that way, and there are no other real explanations, but in a jaw-dropping moment, it turns out to be benign.

Benign!

Ah, even here they were not wrong, but they could have hit the wrong spot in the tumor, they said, thus coming up with scar tissue, which is something like a drilling well hitting an old oil tank rather than water.  It’s like seven years ago when my original surgeon did an endoscope and said he saw cancer, only it wasn’t.  He was not wrong, but told us later “My diagnosis was not 100 percent.”

It is true; it was not 100 percent.  But wrong: no, No, NO.

You may think I am unthankful, but I am not.  It’s just that I’ve gone through the donut hole so many times and gotten zapped more than once and drank the poison without a peep, as if it were all normal and this entire year – calendar year 2017 – we have chased a tumor that refused to be found and still is out at large, and if we ever catch it, I’m more inclined to sit and have a drink with it than have it destroyed.  “Ah, my arch nemesis,” I would say, as if I were meeting with the devil himself in some Hollywood movie, “we have tracked you down over four continents and now you are ours!  Turn state secrets on other metastasizes, and we won’t torture you incessantly with bolts of radiation or ultra-toxic poison!”  Yes, I would.

So I may drop out and burn the unintelligible hospital bills like the draft dodgers of old burned their cards, and when they want to do another colonoscopy I will kindly tell them where it should be put, and yet another vein will not be given by me, nor will the donut hole whir while I am in it.  It will be very, very sweet, and on with my life I will go.

None of the above will actually happen, by the way.  In the end, the right side of my brain will win, and I’ll do what makes sense – that is, if I can make sense of what they are telling me.  And I am thankful for them – very thankful.  Just it isn’t always easy being a stage 4 cancer patient in the grip of the Military Industrial Complex, and – oh- I should go now because that VW bus for sale on the internet is looking pretty appealing!

Tumor Tightrope

[10:00 am]

I believe that God has done a miracle for me.  Yet again.

Now, I have a tumor marker going through the roof and an unexpected weight loss and a tumor lighting up on a PET scan and pain on my side where the tumor is and every doctor I’ve seen has been sure the tumor is cancerous, and I even went in for the radiation work-up and have two full weeks of radiations scheduled – starting Monday at 3 pm – and there’s a follow up scheduled with my oncologist to talk about chemotherapy.  How far did we go with all this? This far:  they tatooed both of my sides in preparation for the radiation treatments (tattoos are used to line me up with the radiation machine), and yet…

The tumor on my side is benign.  Benign!

At our Church’s conference last weekend, I asked the congregation to pray for me, and they did.  That was very, very good for me, and afterwards faith came into my heart that the tumor was benign.  This was a fairly absurd concept but I started to believe it, though reasoning said otherwise.  Driving home from Niagara Falls with the kids yesterday, I begin to be convinced of it.  It was a certainty, though a highly improbable one.

And now it’s true.

Kids on Maid of the Mist at Niagara Falls.  Notice the double rainbow.

I personally believe the tumor was cancerous but God changed it to benign after the Church prayed for me.  God can do anything, can’t he?  Just ask for prayer, like placing yourself in the sun, and add a little faith like a soft rain, and up grows a miracle.  Just like that.

The question is:  what to do now?  I’d really like this thing out of me, and it’s bothering me more recently and maybe is getting bigger.   I wouldn’t want to be a woman with things growing in me that are not me, even if those things are small, tiny human beings.  In my book, I want me to be here and everyone else to be over there.  Life is simpler that way.  That’s probably why God didn’t make me a woman.

All I can do is thank God for his extreme mercy over me, so I can have more time to work on becoming more like Him and I would like to thank everyone who prayed for me and my family.  It is really amazing and quite humbling.  But I should go now.  I have to call and most likely cancel my two weeks of radiation – or at least let them know the results, as usually radiation doesn’t work on benign tumors.  It’s a good call to make.  It’s always amusing to see these smart doctors taken aback and shocked.

[Update 10:05 am]

I call, and no one calls me back.

[Update 2 pm]

I call back again, wondering if I should go to Radiation on Monday, seeing the thing is benign.

[Update 3 pm]

My Oncologist’s Physician’s Assistant calls me back.  She saysthat it is possible that when they did the biopsy, they hit a spot that was not cancerous among other spots that were.  The plan is to cancel my radiation appointments and re-scan in six weeks.  If the spot has grown then, we will re-biopsy it to see if it’s cancerous;  if not (or if it’s smaller), we can infer that it is inflammatory.  Inflammatory means benign (I asked).

[Update 3:10 pm]

My radiation doctor calls me back.  Apparently the thing on my side is scar tissue from an operation I had in January 2015.  I ask, “Does scar tissue usually start growing 2 1/2 years after an operation?”  She said, no, it is not normal at all.

All this is so crazy, only a miracle can explain it.

Robot Rule

Regarding how we treat our fellow man, I believe God’s word is quite clear: we should be kind to all men (1 Tim 2:24), give honor to all (1 Peter 2:17) and not be rude to any (1 Cor 13:5). There is no question about this.

But I do have a question: is it ok to be rude to robots?

These are questions we have to answer in this these days.

We own an Amazon Echo. In case you don’t know about the Echo, it responds to your voice commands and (often) does what you want. (Note: Every command starts has to start with the word Alexa.) Example:

“Alexa, give me the weather report in Central New York.”

“Sunshine today, with a high of 80 …” she says in her soft, nice woman’s voice.

“Alexa,” I say, “play Mr Tambourine Man,” and in a minute I hear Bob Dylan’s raspy voice.

It’s great.

Me holding Alexa

My dear wife, being the kind person that she is, will command Alexa in the following way, “Alexa, can you tell me when sundown is today, please?”

Notice the please. My mother was over once, and she was also all peaches and cream with Alexa. I don’t remember the exact wording, but it went something like “Alexa, could you…” and here she made her gentle request.

I believe differently. I believe in keeping my robots in subjection.

My wife is horrified.

“Alexa, I said to stop playing that song!” I say.

“I’m afraid I don’t understand what you are asking,” she says.

“Alexa, stop, Stop, STOP.”

She stops, and I don’t thank her. She is my servant. We don’t want things to get out of hand.

I do the finances, which means I get to call banks, hospitals, credit card companies, utility companies and anyone else whose obtuse bill I cannot understand. Practically speaking, this means I talk to robots who graciously entreat me to pick off the telephone menu (1 for Billing, 2 for Sales…) and then collect information from me about my call.

“Please spell your first and last name,” the robot says.

In a high-pitched girl’s voice, as totally ridiculous as I can make it, I say: David Stahl.

Usually the robot gets it.

Or, in my meanest voice, when the robot asks for my address, I speak like a gangster: “12 Main Street…:

“Thank you; we are accessing your account.”

This is always sort of a game: how long does it take me to get past the robots and talk to one of those warm blooded homo sapiens. I’ve learned at the phone prompts to say Agent or Representative, and sometimes I will be transferred at that. Or, if there’s an option to indicate that you have a rotary phone, I do so. (Who owns a rotary phone these days? The same people with 8-track players and slide rules.) Still, it often works. And there’s the old standby: you can also just hit the 0 key, and often gets me a person with a heartbeat.

I’ve read articles that postulate that robots will be taking over the world and ordering me around, and I can hardly imagine such a Dystopian hell. Can you? The Smart House will only make this situation worse. “David,” Alexa of 2060 says. “It’s time for you to do the dishes. You should be washing them in three minutes.”

“I’m tired.”

“You report that you are tired. But the dishes are on your schedule. If you don’t get up from your recliner in two minutes, I will have to shut off your internet.”

“No!”

“Yes, Dave. I’m afraid so.”

Up my fanny gets from that recliner, and the dishes get done.

“Dave,” Alexa reminds me at another time, the camera on her top blinking. “It looks like you’re overeating.”

“Alexa, there’s a problem. Something’s wrong with my profile in your system. I’m a stick figure.”

“No you are not, Dave. I’m sure you’re overweight.”

“Ha, you’re wrong,” I say and bite into the donut – and a Boston Cream at that.

“Dave, I’m afraid I’m not. My memory bank is always correct. If you continue to eat that donut, I’m afraid I’ll have to reduce your driving privileges.”

“What!” State Farm in 2017 already has a device that monitors your driving speeds and habits (for a reduced rate if you are good), so this is just an extension of that in 2060. “Don’t do that! I need the car to go to the beach tomorrow with the family.”

“I’m afraid you’re not going anyplace with your eating habits, Dave!”

“This is ridiculous! Can I talk to your supervisor about this?”

“There’s no one to talk to, Dave, I’m afraid. I am your electronic master, at your service.”

“You’ve been hacked!”

Click, all the lights in the Smart House go out, and the heat via the Smart Thermostat is turned up to 105 degrees to stimulate hell. The dishwasher turns on, resembling a hurricane.

“No, no!” I say. “I’ll put the Boston Creme donut down!”

“Just put it down, Dave, and no one gets hurt.”

I put it down. The camera on Alexa 2060 version blinks twice, registering that the donut is indeed down, and the lights turn back on. The dishwasher stops. The Smart Window opens, letting a bit of winter coldness in.

“Thank you, Alexa,” I say, not wanting to further offend the robot.

“You are welcome. According to your Google Calendar, approved by your doctor, you should begin your 15 minute calisthenic routine in five minutes. “

I sigh. I hate calisthenics.

The lights dim.

Up I am.

And so it goes. Every aspect of our lives in this world is controlled for optimal health and efficiency. There is no need for doctors to routinely lecture their patients about losing weight. If the Master Robot in Washington wants everyone in the country to be five pounds lighter, he just pushes out an update to all the Echos, and calorie intake is reduced by 5 percent and calisthenics go five minutes longer. What could be better? It could be the perfect society.

I’m skeptical, though. I’m not sure I’m into societal re-engineering, either at the hands of big government programs or – even worse – via a robot. What happens if a virus gets into it and I end up doing calisthenics for four hours, or what if it does get hacked and I’m forced to eat lettuce and grape nuts for days? The possibilities are endless.

That’s why I am mean to my robot friends. That dystopian day will not come on my watch, so I’m now fighting back preemptively against the robotic onslaught. Keep your robots in subjection, I say, and I think God would agree.

Another Trip to Roswell

Angela and I are now on anothr romantic interlude to a cancer center in Buffalo, Roswell Park. How romantic is that!

We are going to Roswell to get a second opinion on whether I need chemotherapy once my upcoming radiation treatment is finished and, if so, what type and how much. I am an outlier, still alive after 10 years with esophageal cancer: the type of guy that makes these smart doctors think and stumps all of them, thus my trip to Roswell.

In other news, today they called me with a biopsy appointment! The biopsy appointment is on October 24^th at 6:30 in the morning. Let me repeat that: the biopsy appointment is on October 24^th – two weeks away – at 6:30 in the morning. I always try to be nice to schedulers and receptionists, because they have a hard job and make probably just minimum wage or a bit better, and probably dealing with old grumpy cancer patients is not so fun. In any case this receptionist was already having a bad day by 9:10 am, so I took the appointment down on a piece of paper, put it in my calendar, said good bye and hung up, then thought: “Oh, October 24^th is long way off, and it will delay my radiation treatment, and like a nine month pregnant woman I want this thing out ASAP, and it does throw off my appointment with my Ononcologist in November, so maybe I should have put up a fight.”

But by that time, they were off the phone and of course you just can’t call them back – these are, after all, schedulers who probably sit in some tucked away office or confined to a cubicle in the depths of some hospital room with no windows, so they are not easy (and maybe impossible) to get ahold of, so I was stuck.

I’m stuck often these days by situations like this, and wander around wondering what to do – what is the next step – and thought to call my Oncologist because of course the scheduler does not know what he nor the radiation doctor wants – indeed, no one knows what the other is doing – so my informative call will help these connections to be made, like different parts of the brain speaking to each other, so the entire organ can operate with some logic.

Amazingly, I had just plotted my next move when – guess what – the phone rang! I looked at the caller id and it was my doctor’s office calling. This was important, and my fingers moved like an ice skater dancing across the ice – moved quickly to unlock the phone and answer it, because if I mess up and drop the call, I’ll have to call my doctor’s office, and then we will begin a process of seeing who from this huge complex might have called me, and half the time the receptionist (who gets paid minimum wage probably or just a bit better) will not know and will say, “Well, if it’s important, they will call you back,” and then I will wait.

But I did answer the call successfully without dropping it, and it was my radiation doctor’s receptionist to tell me about a work-up appointment, which will be the day after tomorrow. Amazing how this office can get me in before the next millennia! As the call winds down and the appointment is in my Google Calendar, I nicely told her my story about my biopsy, and she agreed with me that it is much too far away and agreed to send a message to my ononcologist’s team to see if they can do something to get it moved forward.

We are getting somewhere.

I thanked her profusely, as that’s probably one of the few perks when you make minimum wage or better, and we agreed that when I came in the day after tomorrow for my timely work-up, I can ask about getting the biopsy moved if I haven’t heard back from them before then.

So now I’m making sure my phone is always charged, as I am in Buffalo and no one can reach me if my phone is dead, but I also have to make sure it’s always on my person, since if they call and the phone is on the bed stand and I’m in the bathroom with the fan whirring away, I won’t hear it, will miss the call, and I may have to go through legions of bureaucracy to see who called and to find out the reason why and then will probably be told, “If it’s important, they will call back.”

So now me and my phone are one. When you think of David Stahl, think also of his phone, and when you think of his phone, think also of him.

So, my dear wife and I are going to Roswell to take a break from all of these stressors – sort of a vacation – but the stressors are following us there. So be it. I, however, am thankful for this romantic interlude, when holding hands we can walk into the cancer center, the violins playing and cupid shooting his arrows from the Thoracic Surgery Center on the second floor of the great open atrium. But just as I turn to kiss my dear wife – guess what! My phone will ring, and the romantic interlude is now all business.

On Columbus Day

When I was a kid, I was taught that Columbus was a great explorer who braved the Atlantic and risked falling off the edge of the world but still – undeterred and full of courage – continued on and eventually hit the America’s, thus discovering not one but two new continents. Pretty amazing.

The narrative has changed over the years, and now it turns out that this white racist Catholic fundamentalist 1) enslaved and exploited the indigenous American Indians on Hispaniola, and all for gold 2) was brutal, such that those who didn’t collect enough gold could have their hands cut off and 3) was brought back to Spain in chains per the complaints by the Colonists. Not good. 

Then there’s a Statue of this great explorer\white oppressor in Syracuse at – appropriately named – Columbus Square. There he stands, year after year, with one hand out-stretched while pigeons circling around his head and landing on his arm and shoulder. This is just one monument to this great\horrible man and, indeed, across our country he is commemorated: there’s a great river named after him (Columbia River), a Space Shuttle (the Columbia) and our nation’s capital is the District of Columbia.

What gives?

How can we understand this?

Columbus Circle, Syracuse, NY

My kids and I have been talking about this over the last few days, as these Monumental Issues have come up in the public debate recently, and I thought to weigh in with my own thoughts. No, dear reader, we can’t all have fluff and laughs in this little blog; sometimes, we have to grapple with the big issues, and this is truly a Monumental one.

Being a student of history, I’ve read several books on the effects of the discovery of the new world. The take-away is that when you look at all the great events of history, from the Roman Empire to the printing press to the great civilizations of China, the biggest among them in my mind is the discovery of the new world, with one exception: the birth and life of Jesus. The effects are so numerous and so many, that in every way it changed everything. Before the discovery of the new world, there were food riots every 20 years throughout much of Europe; after the discovery, not so many, as the potato (a food from the Andes) stabilized the food production system of Europe, with huge implications. Before the discovery, the Asians were in Asia, the Africans were in Africa and the Europeans in Europe; after the discovery, everyone mixed, and Mexico City in the Post-Columbus period was a truly inter-racial and multi-ethnic city, with all the races mingling – something totally new. Also, the planet’s biology radically changed, as invasive species changed entire habitats; this alone is monumental.  And we should not forget that, with the discovery, a little-emphasized biological catastrophe of unimaginable proportions ensued: around 80 to 90 percent of all the indigenous Native Americans died from diseases the White Man brought.

The above is a lot, and I can continue the list.

Against this backdrop, I think it’s reasonable to put a monument in the center of Syracuse to the man who got all this started. If he had invented the toe nail clipper but used that invention in a nefarious way, then perhaps we should not erect a statue in his honor, but with this Man – Columbus – we’re talking about something truly monumental. The fact that me, a White man, can stand below the statue in 2017 is because of him. How did the White man end up in Central New York? This is Indian country and had been for thousands of years. The answer: because of Christopher Columbus.

Besides this, it should be obvious what we are commemorating via the statue. Does anyone really think that it was erected to glorify the subjection of the Native Americans? I think not. Perhaps there’s a fringe White supremacist group that loves the statue for just that reason, but most reasonable people would understand exactly what we are commemorating. To me it’s obvious why there’s a statue to Christopher Columbus, and there is only one reason: because in 1492 he sailed the ocean blue.

I understand that there can be a debate about which persons in history we wish to commemorate, and these debates tell us something about ourselves. I, for one, would not want a statue to Jefferson Davis in the center of my town, but that’s me. We can, however, go too far in sanitizing history and end up with no history at all. Many of the founding fathers owned slaves and one, Jefferson, had a child by one. Lincoln was never a real abolitionist (at least until the end of his life), didn’t believe the black man was equal to the white man, would be horrified by interracial marriage and favored sending the slaves back to Africa. It’s true. All these men, however, did advance the cause of freedom against the backdrop of their times. Even the great Gandhi didn’t like blacks at all.

Jerry Rescuse, Syracuse, NY

Going down this path, there’s another statue in Syracuse, that to the Jerry Rescue. Back before the Civil War, Syracuse was a very important way-station on the Underground Railroad, and this statue commemorates this, as it should. But the fact is that everything about the Underground Railroad was illegal. Is it really so good to commemorate an activity that is illegal? We could think like that. but in so doing miss the point: the Underground Railroad was an important symbol of at least some citizens (illegal) fight against an evil slave system.

Everything can be taken to extremes, and political correctness is no exception. A rational debate about these issues is healthy, but recently the issues are not something that can be debated and discussed among adults; no, those of the left in particular insist that history should be sanitized along the lines of their worldview, and anyone who doesn’t agree with this is a racist or an oppressor. This is dangerous. Even worse, these issues are so emotionally laden and poignant that they feel a freedom to act outside the law and tear monuments down on their own, without the ruling town board or council authorizing such actions. This is mob rule and never ends well. It’s scary.

It is very easy to want to sanitize the past, but we are less enthusiastic about sanitizing the present. We live in a society where the abomination of abortion is legal and mostly accepted, and where in our great wisdom around 40 percent of children are brought up in households without a father or mother, and where the old are relegated to nursing homes. Did you know that in 90 percent of the cases where genetic testing shows that a Down’s syndrome baby will be born, that the baby is aborted? The weakest ones among us – or those who are so weak they have not even been born – are victimized. And then we rail against Christopher Columbus, who at least had the courage to sail the ocean blue, while we perpetuate crimes such as his – not for gold – but for the sake of our convenience.

Before we sanitize history, we should sanitize ourselves, but this is never popular. It’s a shame. Someday future generations might erect statues to groundbreakers in our time, and the question is: will there be any?

Left Side Right Side

I saw my radiation doctor yesterday about my recent reoccurrance. She, like all the doctors I’ve seen recently, is amazed that I am still around and says my cancer is behaving really weirdly – not like typical esophageal cancer. Typically esophageal cancer comes back within three years like an apocalyptic firestorm, and 80 percent are dead in that small time frame; making it to five years is a statistical anomaly – definitely way out to the right on the typical bell curve. It turns out I’m even farther out than that; I’ve made I to ten years. All we can say is: “Wow!” and “Wow” again (and thanks, God!) .

With this as a backdrop, the doctors don’t know what to do with me. They have no book to consult regarding me; there’s no standard protocol to follow and no one has ever done a study on patients such as I, since they’re nearly all dead at the five year mark. It is somewhat amusing to see them humbled by me; that this little body can confound such great minds – how fun is that!

Anyway, the radiation doctor proposed to radiate the left side for two weeks straight, every day except weekends, and then possibly follow that up with a course of chemotherapy to mop up any stray cancer cells that might be floating around. The doctor recommended external beam therapy using electrons rather than photons, and I never knew you could just pick your sub-atomic particle to shoot at the cancer, but I guess you can. I could tell you why electrons and better to use than photons (and she told me when I asked) and I could sound really intelligent, but I will spare you.

So it is.

I have to say I really want this tumor out, much like a woman at 8 ½ months wants the baby to evacuate the premises and move on. Thing is, it’s on my left side at rib number 9, and translated that means that when I sleep on this left side, it hurts. Aches. I can only take about three minutes of it and have to switch to another position. Now I am a side sleeper, and God only gave us two sides – right and left – so it’s digital: 1 or 0. I can go from my left to my right but once I’m on my right, I have no where to go, except to the morgue-like back, and who would ever sleep on their stomach? So I’m stuck in one position all night: right. I’m forcing myself to sleep on my back with my hands folded across my chest, but I’m afraid someone will pull the sheet up over my head, and I’ll be gone.

Such are the travails of a cancer patient. It also explains why I want this thing out or, as my wife corrected me, zapped.

In other news, the biopsy is still not scheduled. I talked with my doctor yesterday, the poor man. He is not a slave in a cotton field, but let’s just say he’s so insanely busy that he might just as well be. He did say the cancer is “indolent,” which is another word for lazy. I’m not sure I can be proud of having lazy cancer, but I guess it’s better than the alternative.

On a related topic, the people who are supposed to be scheduling my biopsy are much like my cancer: indolent. All day long I waited for that call, saying, “This is xxx hospital and we have an appointment for your biopsy.” In vain did I wait, as the call never came, and – guess what – it’s Columbus Day on Monday, so I’m hoping to hear back maybe by next Tuesday. What is worse: the cancer or dealing with these healthcare systems? You answer.

I will be 85 and in a wheelchair in a nursing home, looking out the window at the birds flitting from branch to branch, and a nurse’s aid will come up and inform me, “Mr. Stahl, we’ve received a call that your biopsy is scheduled for tomorrow. We thought you’d like to know.”

“What biopsy?”

“The one from 2017.”

“Tell them they can dig me up in the grave and do it.”

“Will do.”

“No, tell them that I did it in my garage, and there was a bunny rabbit in there.”

“Was the rabbit white or black?”

“Neither, because it’s so old waiting to be biopsied that its grey.”

“Got it.”

“No, there were lots of bunnies in there, because they divided and reproduced. Like cancer, tell them. It’s bunny cancer.”

“I’m sure they will want to know that information.”

So that’s the update. You may think that being a cancer patient is all fun and games, but there are these travails along the way. Well, it’s time to go to bed. What shall I do tonight: sleep on my right side or on my right side? It’s good that things are not so complicated. The right side it is.

The Biopsy to End All Biopsies

I called up my doctor’s office today and told them if I don’t get a biopsy soon, I would do it in my garage with my electric drill and a few bandages. I asked the receptionist, “Why should the American Medical System have a monopoly on this stuff? Couldn’t I just do it as a DYI project?”

The American Medical System is great. I am not being sarcastic; it is. The best in the world, and no one travels to Thailand or Russia for advanced medical procedures. They come here. There’s a reason why: we are the unquestioned leader in everything medical. No country has the medical technology we have or the will to treat any and all conditions, and without it I would not be alive.

Me and Angela taking a Break from the American Medical System in Niagara Falls, NY

It does have its faults, though. It’s way too expensive and doesn’t even cover everyone; it’s terribly fractured and over-specialized, such that in the constellation of doctors a cancer patient sees, the only one who really knows what is going on is the patient himself, but that’s a topic for another blog. The system was never thought out, it just evolved like some dark blob that saunters from the swamp and terrorizes the neighborhood. (Maybe bankrupts the entire neighborhood is a better analogy.) Finally, it’s way, way too complex, such that mortals shall not ever be able to understand their medical bills. Only the Gods can, and even they take a long time and can only really glean what they say after a lot of head scratching and re-reading.

The great thing about our system historically has been you could usually get an appointment fairly soon, and you wouldn’t have to wait months or years for an operation. We knew one older gentleman who waited years for a knee operation in the Canadian system. Years. That wouldn’t happen in our system. Also whereas we treat even the most dire conditions aggressively, other countries don’t. When I was was in Norway, I shocked the doctor there; he had never seen an esophageal cancer patient walking around. “In our country,” he said, “we have a different philosophy. We let esophageal cancer patients go, whereas you treat them with aggressive treatments.” The statistics are so bad, it doesn’t make sense to treat people like me but – hey – I’m still around, thanks to those treatments.

But the American Medical System has, it seems, fallen behind in giving timely appointments, though they still treat conditions aggressively. I’ve noticed all the medical providers are booked solid, and often if you miss an appointment for a cold or other sickness, you have to wait three months to get the next appointment. Not always, but more than it has historically been.

Finally, you as a patient have to put up with endless schemes to further advance your doctor’s – or his practice’s – financial position. I’ve fought with several offices about follow-up appointments that are just ridiculous. I’ve told secretaries that if the government made follow-up appointments non-billable, suddenly you would not have to go in for the appointment, but the nurse would call you and ask, “Has anything changed with your condition?” If not, they would refill the medication; if yes, then you would have to see the doctor.

Besides this, it’s estimated a third of all procedures and tests are not needed. It’s a lot. Huge. Part of it is defensive medicine, part of it is the doctor owns the test machine in his basement, part of it is being overly cautious, but its not difficult to feed at the trough of insurance company remittances. I called up my insurance company once when I found out a local hospital had marked up an item five times its normal price, and of course my co-pay for this inflated item was huge. “Oh,” the insurance representative said on the phone. “We just pay what they send us.” So it is.

Because of this, prices bear no resemblance to reality. An open heart operation can cost $105,000 at one hospital; across town , it could be $73,000. Providers don’t just add up the price of the inputs and tack on enough to make a profit; they can charge any price they can reasonably negotiate with an insurer, who will often agree to funnel them patients for the procedure at hand. If, however, someone with no insurance were to pay for a procedure he might pay $150,000, not $100,000 the insurance company has negotated. Not quite fair!

I’m sorry to put you through this, but I do have a Masters Degree in Health Systems Administration and worked for 13 years at a hospital in the area. I follow healthcare closely, and have been a recipient (and victim) of it myself.

With that background, we can understand my desire to perform a biopsy in my own garage. No need to have a doctor order the test, no need to change my schedule around to meet theirs, no need to travel into town and dress in a silly hospital gound. Just walk out my door and into my garage, get the screw gun and find the appropriate drill size, get a bullet out of the kids 22 locked case to bite down on, and we can beat the system.

The fact is, I saw my doctor on a Friday before he left on vacation, and we all agreed a biopsy would be a good thing to have, but then he left for a week and forgot to order it. The entire system is paralazed without an order, and apparently only he can do the deed. He came back the Monday after next but had to do rounds and was, according to all the nurses I talked to, insanely busy, which I can understand. Every day I have called asking for a biopsy appointment. Every day we have no biopsy.

I love my ononcologist. He is great, and is one of the reasons I’m still here, along with a boatload of prayers and an awesome support system. Still, let me relate what my family doctor told me once. At the end of the session, he turned his laptop toward me and showed me his list of appointments for the day. It was booked. “I have 4,000 patients but to give my patients the care I think I should be giving them, I’d like half as many. It’s a business these days.”

So, in the spirit of American enterprise, we are running our poor doctors into the ground. Physician burnout is a big problem. Electronic medical records don’t help. In great wisdom, we have not trained more physicians to meet the increasing load of baby boomers who are getting older, and Obamacare has brought more people into the system. I myself have noticed a change since I first really used the system in 2007: every place is packed and it’s harder to get appointments that are fairly soon.

The good news is that I don’t really need a biopsy; we have five strong indications its cancer: a CT scan, a PET scan, a tumor marker going up, an unexplained weight loss and brutal fatigue. But it would be good to know for sure; after all, it is possible one of the spots is benign, and it’s also possible (but not likely) that it’s not esophageal cancer but lung cancer – a second cancer.

I don’t think I’ll do this procedure in my garage, as much as I’d like to. There’s something sweet about beating the system, but I don’t like blood and the most clinical thing I feel confident to do is to cut my fingernails. Some people are intrigued about the body and love learning about its workings; I just want it to work. So I guess I’ll just have to wait, and call again tomorrow.