The Lump on My Neck

Use these links to get to: Part Two, Part Three, and Part Four.

So, here’s my experience with medical care (eight weeks into the process)…

Decision to See a Doctor: Around October 13, 2017

I noticed a lump in my neck in July, and though nothing of it because I’ve had similar lumps come and go in the past. But by October it was the size of a golf ball, and I had read online that the lack of any pain in a neck lump might be a bad thing (that’s foreshadowing, by the way).

I scheduled an appointment for November 1st at El Rio Community Health Center, which is supposed to offer affordable health care. It’s one of the largest non-profit health care centers in the country, and it’s also walking distance from where we live.

Fortunately I was able to get in that quickly because Ana was already an established patient. Otherwise it can take more than a month. I got her doctor too, Dr. Bautista.

First Doctor Visit: November 1, 2017

On the 1st I tolerated the usual confusion healthcare workers experience when you have no insurance and say you’ll pay directly. After some investigations the nice teenager at the desk told me it would cost only $75 to see the doctor with a “self pay” discount, as long as I paid before service. I gave her my credit card.

The teenage doctor (okay, he was probably 30, but really looked like 22) looked at the lump on my neck, spent ten minutes asking me questions, and recommended an ultrasound and biopsy. For that I needed an order, but the department which does those wasn’t open, so I was told they’ll send it too me by mail.

I also had blood drawn so they could do a full blood workup.

The following week the order hadn’t arrived, so after several phone calls I gave up on that route and went in person to get it at the doctor’s office. I’m not convinced they would have ever sent it.

The blood work also wasn’t sent to me, until after a phone call or two. Fortunately everything was normal.

With my order in hand I called Radiology Ltd and scheduled the ultrasound and biopsy. The receptionist had no idea what it would cost, and seemed confused and annoyed by the question.

As my wife Ana and I have previously experienced, the usual attitude seems to be: “It’s none of your business; your just the patient; you’ll do what we say and pay whatever we decide to charge.”

To be fair, most of the people I talked to were very nice, even if they didn’t understand why someone would want to know the actual cost of a service.

After several calls back and forth to the billing department I determined the price and found I could get a healthy discount (40% off) for “self pay.”

Worthless Waste of Time Ultrasound: Tuesday, November 9, 2017

Two weeks later I arrived to discover that the office at which I had the appointment didn’t do biopsies, and the order isn’t good enough anyhow (no idea why — at some point you forget to ask yet another question). They did just the ultrasound, which cost only $126 after my discount.

Afterward I realize that what the doctor really wanted me to get was an ultrasound-guided biopsy, so I had just thrown away money and time for nothing.

Oh well, maybe the doctor could see something in the ultrasound pictures — if he ever looked at them. They were sent to his office minutes after the procedure, but he didn’t call for days. I had to call a couple and nag his staff to get him to call back just to tell me… go ahead and get the ultrasound-guided biopsy (big surprise).

Eventually Radiology Ltd got the right order faxed over from the doctor (more nagging phone calls on my part) and I scheduled a biopsy at a different office.

I went through the usual round of phone calls to determine the price, which I had to pay in advance when I arrived. I guess they don’t want you to run away without paying once you see the needle.

Oh, by the way, say hello to my little friend:

Biopsy: Tuesday, November 28, 2017

I went for the biopsy on Tuesday morning and found that preregistering online hadn’t really shortened the paperwork process at the office much. Then we had a delay while the staff once again got confused about the cash price and had to call around town (seriously) to find an office with someone who could authorize the charge. It took over 30 minutes to determine that yes, my discounted price would be the $644 they had promised.

By the way, I actually look at paperwork when I sign it, and read parts of it, and in no place did they say there would be an additional charge for interpreting the biopsy. At no time in the weeks and phone calls leading up to this point did they say there would be an extra charge.

More than that: When I later called and asked if the lab work was included in the price, the woman said yes, it is included. It wasn’t… I’ll get back to that.

The biopsy doctor was late for work, so they called around to find him and we got started an hour late. The four or five people gathered seemed to worry a lot about pain, but sticking a needle in a neck lump a few time to tear a few pieces out is less painful than you might think. I could have slept through the procedure.

At some point they let me know that the tissue samples would be sent to Tucson Pathology for interpretation, and I should have the results in 48 hours.

Two days later I got an email from Radiology Ltd telling me that the final report was sent to my doctor and available for viewing in my online account. I created an account, logged in, and found the report.

Never mind the medicalese; it basically said “we stuck this guy with a needle and took two tissue samples.” That’s it. Nothing I didn’t already know.

I called to ask about the real report (the relevant one), and found that Tucson Pathology would send their report to the doctor when it was ready. It had already been sent, but I didn’t know that, so I waited.

I called on Friday to El Rio, and was told the doctor would call me when he got the results.

By Monday morning the following week I figured that if I didn’t follow up I would never get the report, so I called El Rio two more times and left a message for the doctor. He never called back.

Cancer Self-Diagnosis: Tuesday, December 5th

Tuesday morning I got a call from “Pathology Billing Service” to verify my address, which I sleepily did. Of course, I realized that this meant there was an extra charge I hadn’t known about. The employee who called mentioned an “oncology report,” so I figured maybe the samples may have been sent to another lab to be checked for cancer, and that’s why there was an extra charge.

In the medical industry it seems everyone feels free to send your specimens around, without telling you, apparently to help as many business associates as possible get into your wallet.

I called Radiology LTD and was told the lab work was included in the price.

I called Tucson Pathology and was told, no they had not passed on my tissue samples to another lab, and their lab work is always a separate charge.

In case you haven’t caught on yet, in the medical industry your cost is entirely irrelevant to just about everyone. More than that, they seem to assume it is similarly unimportant to you. The doctor’s next boat payment and the per-share earnings of the corporation — those are important matters.

Stop and think about this for a moment…

If you paid a company to paint your house, would you be happy to see a bill months later from “ABC Paint Mixing?”

“Well someone had to mix the paint,” the painter explains, “so you have to pay that company. But at least it’s less than the painter transportation charge. Have you received that bill yet?”

This is beyond rude. Of course there have to be extra charges when extra work is done, but at the very least the patient should be told there will be other charges. It’s ridiculous to assume patients know all of this, and have no interest in the cost. It verges on fraud not to mention these other charges.

One line on the sixteen pages of paperwork we sign would be sufficient. Here’s my suggested wording:

“There may be additional charges from anyone with whom we feel like sharing the money in your bank account.”

So how much is the bill that’s being sent? She didn’t know, but politely transferred me to billing. The employee there didn’t know, and told me that they don’t do those billings (?). They send them to their office in Phoenix. She politely transferred me to that office.

It was “Pathology Billing Service,” again, which I determined (I asked specifically) is a separate company – one that had no idea how much the bill was, because they didn’t even know yet what the date of service was, and still had to “prepare” the bill.

I called my doctor’s office again and left another message.

I called Tucson Pathology and asked if the report had been sent to my doctor. That’s when I learned that my doctor had received it five days earlier! Could I get it myself? Sure, she said, didn’t the lab have you sign something so we could send it to you? Apparently not. Little oversights like that happen, well continually.

But I could get if I came in person and had ID. So Ana and I drove 35 minutes across town and found the office that had my results. I’ll get back to that…

During these weeks I discovered that our income had finally dropped enough so (with the subsidy) we could afford to get insurance — at least until the Republicans destroy Obamacare and replace it with… nothing. I signed up for a policy that has a $6,500 deductible, which would go into effect on January 1st, 2018.

Okay, the really big stuff will be covered, I figured. Then I realized something…

Once I have insurance my medical expenses will be higher. If I need another biopsy, for example, I’ll have to pay the $1,073 price instead of $644, essentially throwing away $429, since I’m unlikely to have spent the $6,500 deductible amount (I’ve never spent even $1,000 in medical care in any of the last 30 years).

Of course I could pay cash to get the discount, but then if I went over my deductible that year I would have thrown away $644. The future, it seems, will involve a lot of guesswork when it comes to how to pay for my health services. Should I pay $210 for my next neck ultrasound and work toward the deductible, or should I just pay $126 on the assumption I won’t pass $6,500 in medical expenses this year. Decisions, decisions.

In case you haven’t caught on yet, we have a really screwed-up healthcare system. And Obamacare is a joke, although it is certainly better — and less mean-spirited and dishonest — than any of the jokes the Republicans will ever pass into law.

As it turns out, those decisions would get a lot easier because I would be easily spending the $6,500 deductible next year.

The results: Neck Cancer (Squamous Cell Carcinoma, Probably Metastatic)

This type of neck cancer is particularly aggressive. That’s what I determined from the report and online research. The doctor still hadn’t called.

I called the doctor again and told the receptionist, “I had a biopsy last week and the doctor had the results five days ago but still hasn’t called me, so I went and got the report myself only to discover that I have cancer, and I’m not sure what to do next, so could you maybe have the doctor call me?”

She left him another message, and at least this time she marked it urgent, or so she told me.

Nobody would ever call.

Ana and I went to the health center and badgered people until they finally got the referral department to refer me to an oncologist. Of course I had to give them a list of ones that would take my insurance in the future, when it went into effect.

Doctor Christopher Di Simone was the recommendation, which was good, because he had great ratings online from previous patients. They also squeezed me in for an appointment with my PCP (Primary Care Physician — starting to learn the lingo), Doctor Bautista, on Friday the 8th.

By the way, I like Doctor Bautista, and I still have no idea who is actually responsible for all of these screw-ups.

I called Doctor Di Simone’s office at Arizona Oncology (one of his offices; these guys work all over). I was transferred to the new patient coordinator, who, of course, didn’t answer the phone. I left a message.

No call back. I called again the next day and left a message with the new patient manager. I still didn’t get a call back.

I called again and asked the receptionist where they were located so I could come and talk about getting an appointment. She finally routed my call to someone that she apparently knew would answer. Why didn’t she do that the first time?

Squeaky wheel gets the grease; remember that! Seriously, being a pain-in-the-ass patient can save your life.

Surprisingly, they were able to get me in the next day.

Even more surprisingly, I only had to pay $225 if I paid by credit card at the time of service. That seems pretty good for a visit with a specialist. Of course, I might later get billed for extras, like a “phone answering charge,” or a “taking of blood pressure charge.”

Who really knows – the charges are none of my business, after all.

Think I’m being too sarcastic? Read on. It gets worse…

The Oncologist: Thursday, December 7, 2017

By the time I got in to see the oncologist I had a long list of questions. Fortunately Doctor Di Simone doesn’t rush (although that meant Ana and I waited for an hour in a little room while he also didn’t rush with the patient before me). I liked the guy. He actually listened.

But despite liking the doctor, I also recognized that for all of his experience and knowledge he was still very much a product of conventional medical education and culture. For example, when I brought up the fact that radiation therapy for neck cancer can destroy the thyroid gland (I was 20 hours into my online research by this point), his response was, “You don’t need a thyroid; there are pills you can take to replace it’s function.”

“And you don’t need a dick to survive doc, but you probably want to keep yours.”

Okay, I refrained from actually saying that.

The neck tumor was almost certainly not the “primary” he explained. He would refer me to a n ENT doctor (ear, nose, throat) to see if we could find other tumors, hopefully including the primary one, and his office would also set up two CT scans, for my chest and neck.

I told him I wanted the scans done at SimonMed, because I could get them for $248 each. He said Arizona Oncology had a scanner, so I challenged him (an old negotiating technique) with, “Yeah, but I don’t think you can compete with that price.”

He left for two minutes and came back to tell me they could do both scan for $400 total. That would save me another $96, or a couple thousand versus randomly choosing (really; the price differences for the same procedures are amazing).

I could see that, after further tests, he would be pushing for surgery, radiation, and chemo. He had an assistant do a quick blood test (no idea how much that will cost) for kidney function, which was necessary so CT scans (with contrast) could be set up as soon as possible (I guess the dye they use for contrast might be a problem if you’re not peeing normally).

The next day I saw my PCP at El Rio and discovered that I could apply for a “presumptive” discount, which meant I got a discount for two weeks, on the assumption that I would apply for a longer-term income-based discount program (which we now unfortunately qualify for). I paid only $25 to see the doctor – still more than the value of the visit.

Doctor’s orders: Eat well, meditate, enjoy life, and get ready for being half-dead from the treatments.

By now I had already started several alternative treatments. When facing a $100,000 illness, why not spend a few hundred dollars on alternatives that have some evidence going for them? Of course the oncologist had said diet and other lifestyle changes were irrelevant (“but maybe eat organic”). I’m not sure he even believes food is necessary (they make pills to replace that, right?).

Four Month Life Expectancy: Sunday, December 10, 2017

By Sunday I had 35 files of notes related to cancer in my laptop, and I had changed my mind about what I would do several times. I also had 15 more questions printed out for my oncologist, and 30 more hours of research under my belt.

A phone call from a friend that evening gave me the best options yet:

1. Cyberknife (Brand name for one form of “stereotactic radiosurgery”; robot moves around, zapping the tumor)
2. Brachytherapy (radioactive “seeds” are put in the tumor)

These both precisely target the radiation, so there are minimal side effects. That means I may not lose my teeth, thyroid, sense of taste, salivary glands, and hearing (all regular side effects of traditional radiation therapy when applied to the neck and head).

I even found a place in Phoenix (2 hours away) that does those therapies and takes my insurance – the insurance that will be in effect by the time I can get someone to call back.

With the $6,500 deductible next year, the $3,000 I’ll spend this year, and say, $4,000 in miscellaneous expenses not covered by the insurance, I think I’ll be able to survive or be killed for under $15,000.

Well, not counting income loss. I cut back on work to have the time necessary for dealing with this.

So, $15,000? That’s survivable, but let’s hope the cancer is.

Speaking of that. Sunday night I finally found a study addressing survival rates for untreated head and neck cancer. Yes, I had to know if treatment was actually better than none: a doctors opinion is not evidence, and medical practice is only loosely related to science (IMO).

The study tracked 808 untreated patients over two decades (some people are too weak for treatment and some refuse it). Here are the two crucial takeaways:

1. The longest survival time was a bit over four years.
2. Half of all subjects died within four months.

Four months! Good thing I didn’t get this diagnosed back in July when I first felt it, or I’d have died a month ago!

Well, now that I’ve started the clock ticking with that darn biopsy, time is of the essence. Doctors say that too, even if they do take forever to get back to you, to read results, to schedule tests, etc.

That’s an important point, by the way. If you get a time-sensitive illness, I suggest nagging every health care provider constantly, or you’ll die waiting. They really don’t seem concerned about getting back to you when you call, or calling you when they get results, etc.

Don’t make too much of the 4-month thing. I suspect very few of the 808 patients in the study were healthy people who refused treatment. Most were probably older folks who were too weak for treatment. You have to think about how these studies are done to really understand what they mean. The relevant point for me was that nobody survived past 4.3 years without treatment, so maybe I’ll get treated.

The First Bill Battle: Monday, December 11, 2017

No call from the oncologist. Monday afternoon, I call Arizona Oncology and I’m transferred to an answering machine in the scheduling department, so I can get to see that throat doctor and get my scans. I leave a message, but nobody calls back.

Meanwhile, remember that $75 visit to the community health center that started this adventure? You know, the non-profit place that’s supposed to provide affordable care?

Well, Saturday I has received a followup bill for $455. I assumed this was for the blood work, since I hadn’t paid for that. But there was no description. None. Nothing. Okay, there were dates and random strings of numbers.

I tried calling about it, but nobody answers their phones any longer, or returns calls.

Ana and I went to the health center. I figured I could negotiate a self-pay discount (I hadn’t failed yet), but I also wanted to know for sure what I was paying for.

Not surprisingly, nobody could say what the code numbers on the bill meant. Not the receptionist, nor the other receptionist, nor the woman in the financial assistance department, who was nice enough to call the billing company in Los Angeles and talk to several people… who couldn’t explain it either.

We left, planning to call later to figure it out, but we had figured out that $52 of the bill was for the blood work, so I went back in to pay that part.

Once I had paid that part the receipt suddenly had a more detailed breakdown of the other charges.

Stop. If anyone who makes these decisions is reading this, try this: Put an English sentence on the bills for each line item!!!

“This is what you owe for seeing the doctor.”
“This is what you owe for blood work.”
“This is your appointment reminder call charge.”

With a partial deciphering of the new itemization it seemed that it cost $15.50 for drawing blood and $36.50 for the lab work — the $52 I paid.

That left $403. I pointed out to yet another receptionist that I had paid $75 already – the amount I was told it cost to see the doctor. I owed $403 more? A total of $478 for a fifteen-minute checkup would make this “affordable” “non-profit” health clinic the most expensive way to see a doctor that I had heard of.

I asked to speak to the manager.

The manager was great. She was very nice, and agreed that the bills could be clearer. She even agreed that English (and Spanish) might be a better bill languages than “Codese.”

Apparently the charge for the doctor was $219, and my $75 was just a down payment, so I owed $144 for that charge. I explained that I would not pay that because I was told the charge was $75. She agreed that it was unfair.

Furthermore, she explained that when I made the first appointment I should have been told about the one-time “presumptive discount” in which case everything (even the blood work) would have come to… $25!

Yeah, that was an expensive little oversight on the part of the scheduler or receptionist (whoever was supposed to tell me). She said she’ll be working on the training of the employees. I asked her if she could get a time machine and do that a month ago (not really).

That left a charge of $259, which apparently had been discounted by $110 for self-pay. That charge was for… she didn’t know. Nobody knows, but if somebody on the planet does, she’s going to find out by Friday, and give me a call.

We think it might be for the doctor to look at the blood work printout, nod his head and say “looks good,” and then forget to send it to me. If so, that makes my teenage doctor’s rate-per-minute about 50 times higher than the oncologist who spent an hour with me for $225.

Ana’s doctor in Colorado never charged extra to call and explain a blood test, but I guess this is the way now. The point seems to be to hide the true cost of everything, so you go willy-nilly through the system without a care, racking up additional medical-provider-enriching charges while you pay what you think you owe.

I’m going to set up a company that randomly sends out medical bills for invented services. Apparently many people just pay without question, so I think this will make me a millionaire.

Have I mentioned how fucked up our health care system is? The clinic manager agreed with me on that. She was very agreeable, and I think she’ll at least knock off that $144 from my bill (if so, it was an hour well-spent). Maybe she’ll even discover what the other charge is for, but I’m not holding my breath.

Yet Another Tuesday Morning: December 12, 2017

We arrive at Tuesday morning, one week from when I had to practically dig my own biopsy results out of a file to discover I had cancer. We are waiting on calls that probably will not come. Ana and I are about to drive 35 minutes across town to the oncologist’s office to see if they’ll let me see the throat doctor or get a CT scan. I’m harder to ignore in person than on an answering machine.

The financial tally so far? Not clear, but I think I’ve spent $2,000.

A common theory is that it’s worth anything to save your life, but in practice you do have to think about the medical care that will come later, because if you can’t pay for it you might die then. So keeping a lid on costs now is also important.

By the way, the tumor has shrunk since last week when I started the alternative treatments. Investing a couple hundred dollars of supplements and such, giving up beer and wine, and changing my diet – these things may be helping.

The alternative treatments? I offer no details because there is too much to explain and they sound crazy.

But I will say this…

  • There is evidence for them (one $3 treatment has been in trials at the University of Arizona here in Tucson).
  • They are safe according to everything I could find online.
  • They are inexpensive.

Now… Isn’t it crazy to not try safe, cheap options while waiting for conventional treatments to begin? After all, the fact that the anti-cancer drug Keytruda fails most cancer patients and costs $150,000 per year doesn’t stop people from trying that (per doctors’ orders).

Did I mention how screwed up our health care system is?

  • I interrupt this report for several bits of ironic news.
  • I feel great, with no symptoms or pain, and I’ve even been in a good mood.This year, when my cancer developed, is the year when we’ve been eating better thanks to inexpensive fruits and veggies here in Tucson, and exercising consistently.
  • The Cat (CT) scans I’ll have don’t seem to have any serious side effect except… an increased risk of cancer (no I didn’t make that up).

I called the Phoenix CyberKnife and Radiation Oncology Center in Phoenix (after an unsuccessful search for anyplace here in Tucson that does stereotactic radiosurgery or brachytherapy). I had filled out their contact form online several days before and left a message or two by phone, but they had not contacted me yet.

I explained my difficulty getting any response from them, and the receptionist took down my information and actually made an appointment for me (yeah!). I did have to beg a bit to get in on the 21st (nine days away), but she didn’t even ask for a doctors referral – she could contact my oncologist for me.

And, get this: The consultation is for two hours and the self-pay charge is only $210! (Unless they send a second bill for $300 for that piece of paper they put on the examination table).

Tuesday Afternoon Update: December 12, 2017

We went to my oncologist’s office and told them we wanted to get my scans and ENT doctor appointment set up. Sure, she said, wait here and I’ll get the scheduler – you know the one that never returns my calls.

Someone called me over a few minutes later and gave me a slip of paper with the phone number of SimonMed Imaging, the place I originally planned on for my scans. That’s where the order had been sent she said.

“Don’t you have scanners here?” I asked.

“No, we have them at our other office, but it would cost you three times as much there.”

Apparently the $400 deal didn’t go through.

We did not call SimonMed, having learned by now that a phone isn’t actually very useful in medical matters. We drove there and went to the desk.

“We have three locations. Which one was the order sent to?” asked the receptionist.

“This one, I hope, but I have no idea.”

She searched at all three and found nothing. The order had not been sent.

I called Tucson Oncology from the car. After explaining the problem I was, of course, transferred to someone else, so I could explain it again. That woman (a scheduler I believe) said that she could not send the order to SimonMed until she got the okay from the doctor tomorrow, but she had sent the order to their own imaging office.

“Really?” I asked (trying not to laugh aloud). “But do they know that doctor Di Simone arranged for a price of $400.”

She assured me that doctor Di Simone had spoken to a doctor Rosenberg and confirmed that price.

“So I can call right now and schedule my scans?”

“Yes, anytime.”

Did I mention how screwed up… never mind.

Ana was more angry than me about all of this. It had reached such a point of absurdity by now that I was laughing much of the time. They say laughter is the best medicine, so hey, maybe that’s what all these medical office workers were trying to achieve. Thanks ladies!

I called and spoke to a nice gentleman at the Arizona Oncology imaging location. He took all of my information and… told me to wait for a coordinator to call me back to set up an appointment. He’ll call today, he assured me.

I don’t actually expect a call today. Nobody calls back. I’m giving him a few hours and then I will call again… and then we will go in person, 35 minutes (each way) across town, to sit in their office until they set a date and time for my scans.

Meanwhile, I return to my endless research and home treatments (which includes at least one comedy program or movie every night).

Things Start to Move: Late Tuesday, December 12, 2017

Later Tuesday afternoon three good things happened.

  1. I was able to badger the imaging place into setting up my scans for Thursday morning.
  2. The ENT doctor’s office actually called me when they got the oncologists referral (which is the usual procedure, even though this was the first time it happened).
  3. I also was able to get an appointment with a radiation oncologist that my oncologist referred me too, and it happened to be the one that a friend who works in health care named as the best in town (believe it or not there are dozens of oncologists in Tucson — who knew we needed so many?). If he does my preferred treatments I may not need to go to Phoenix.

More good news: The uninsured price for the new oncologist? $117! I think I may have discovered one of the rare doctors whose primary mission is to help people, even if that only means making a great living instead of a super great living (In any case I’m sure the insured patients pay triple that and make up most of his clientele).

So I have appointments every day this week. By Friday I’ll have been to at least 7 different places in dealing with Dartagnan (did I mention that the tumor has a name?).

The Benefits of Cancer

Cancer is an opportunity to rack up points and cash back on credit cards. I get 2% back on one card, for example, which really adds up when you see several doctors in a week. I got a new card a couple weeks ago, and I needed $1,500 in charges on it within a couple months to get a $100 bonus. It took nine days. I’ll be using our free Hyatt nights in Phoenix, but if I use the Hyatt credit card for the treatments there I’ll earn those free nights right back.

Another benefit? If I get a six-month prognosis I can stop that tedious flossing — I mean, really what would the point be?


That study of 808 untreated head and neck cancer patients says: “The overall survival ranged from 1 day to 53.8 months (median 3.82 months).”

Other studies I found put the survival rate for treated neck cancer at 50% at 3 years, 38% at 5 years, and 27% at 10 years. The standard for “success” is apparently 5 years, an arbitrary number chosen long ago.

There’s actually some good news, and you have to take these all with a grain of salt. The particulars of the cases matter, for one thing. For example, the median age for diagnoses in the 60s, so as a younger person, I have a better chance.

Also, survival rates are based on studies done a while ago, and treatments have become more effective.

But I will work on my last will and testament (do I need the “testament” part?).

More updates to come…

I Found God: Wednesday, December 13, 2017

Come on guys, you didn’t really believe that did you?

But in related news, I did put in my will that I want a simple burial with no religious or patriotic crap on my casket or my plain marker, and no religious words spoken over me (I’ll dig my way out and smack you if you try).

To Rip Out the Jugular or Not: Thursday, December 14, 2017

Yesterday I went to Doctor La Mear, the ENT doc. Had my nose sprayed with a mild anesthetic to numb it up, but I tricked the assistant and blew out at the same time, so I didn’t get much. I knew I didn’t need it, but why argue when you can trick them?

A tube up my nose and all the way down into my throat was, in fact, uncomfortable, but tolerable. Left tonsil suspicious, nothing else wrong.

La Mear is the surgeon who would remove the tumor if necessary, but doesn’t take my insurance, as it turns out (the one I’ll have in 18 days). He said he didn’t think any ENT Doctors take insurances that come from the exchange, but he would check.

“Just so you know, you are fighting for your life at this point.” He’s a no-nonsense kind of doctor, and I like him. He also said surgery may not be the best plan.

This morning I went to get my CT scans. That place had the worse selection of magazines I’ve seen. I had a hunting magazine that told me which guns to buy, and a bible that told me which people god wants us to stone to death.

Lesson: Bring reading material.

In the big machine room the technician gave up on getting the IV needle into a vein in my left arm, and hit it right away in my right when I suggested that one was better. The dye came in and I got to feel what a menopause hot flash is like. But only for a few seconds.

I’m not claustrophobic, so no problem in the spinning tube.

I had them make a disk for me (always do that; you can’t trust anyplace to send the imaging where and when you need it). And they stuck with the agreed price of $400 for both scans!

Later today DR La Mear called after seeing the scans and said he had bad news, and good news.

The bad news is that the cancer had metastasized to my neck from the original tumor in my left tonsil. But a secondary tumor was expected anyhow (and it’s just a good guess until a tonsil biopsy is done, if they bother).

Oh, and the jugular vein is occluded, possibly filled with cancer, and will need to be taken out if they operate. I didn’t know that could be done, but the doctor assures me I don’t need it.

Hmm… I wonder if that explains my faltering chess game?

The good news is that my chest is clear, and they may be able to try radiation and chemo Before doing surgery, and then, if I’m lucky (as I usually am) I may not even need surgery, either because I’ll be fine or dead.

More good news: I got approved for my 37th credit card today, and will earn a $150 bonus on it after spending just $500 in the first 90 days. Heck, that’s just a couple doctor visits.

I finally tallied expenses so far: About $3,000 and counting. I’m looking forward to that insurance kicking in so the bills will at least count toward the deductible.

A good friend offered to marry me so I could go on her excellent insurance, but that would require Ana and I to divorce or become fundamentalist Mormons.

Oh, did I mention that today in the mail I finally got the referral to the first oncologist from my doctor? Might as well have sent it next year.

Lesson: Don’t ever wait for a referral in the mail, even if promised on the phone. Go to the office (as we did) and stay there until they fax or email it to the specialist.

Tomorrow I see the radiation oncologist and (possibly) decide on a course of treatment.

Research Update: Friday, December 5, 2017

Did you know that you can find out online which drug and device companies are giving money to your doctors? Here’s one place that has some of the data:

For example, I can see that in 2014, Doctor Simone, my primary oncologist, received 92 payments totaling $4,742 from 16 different companies. Most of those aren’t cash, but simply a pharmaceutical rep paying for lunch. But there is that “consulting” fee of $3,500 from Bayer HealthCare Pharmaceuticals Inc., related to “Stivarga.” a chemotherapy drug.

I suspect most doctors get these payments, and I’m not sure how much of an effect they have on what they prescribe, but it’s interesting, and not entirely comforting.

For example, Ana’s allergy doctor was really pushing for this sinus dilation system where they insert balloons into the sinus cavities of your head and inflate them just enough to open up the passages without blowing up your head. I felt like we were at a car dealership.

So I checked. Yes, he did receive over $1,428 from Entellus Medical, Inc., a company that makes the “Xpress Multi-Sinus Dilation System.” Payments were in the form of numerous free meals and some large “travel expenses.” My guess is that those were free trips to a nice resort for education on how to use the system for maximum profit.

By the way, I found this information on a Blue Cross website: “Balloon ostial dilation for treatment of chronic sinusitis is considered investigational.” And this: “Well-designed studies in peer-reviewed journals continue to be lacking.”

It seems that “alternative therapies” are acceptable to doctors when they make a good profit on them, but somehow dangerous if tried by their walking ATMs (that’s us).

Go ahead and check out your doctors. You might be surprised.

Off to see my Radiation Oncologist (most recent year with data: 11 payments from drug companies totaling $177, all under the category “Food and Beverage, so just a few free meals — that’s not bad).

Planning for Radiation and Chemo: Saturday, December 16, 2017

Yesterday I went to Doctor Frye, my radiation oncologist, and got another tube shoved up my nose and into my throat. This time I let him numb the passageway, just to see if it was more comfortable that way. Believe it or not, it was worse. Who would have guessed that putting something a foot long into a nostril would hurt?

Frye has done stereotactic radiosurgery, which I thought I wanted, but he is convinced it’s not appropriate, because it won’t catch the other cancer cells (in the tonsil, but it’s also assumed they have spread to lymph nodes on the other side of my neck.

I’m almost convinced. My final decision will be Monday or Thursday, depending on whether I go to Phoenix as scheduled, for another opinion.

Concurrent IMRT (intensity-modulated radiotherapy) and chemotherapy is the plan. Five hour-long sessions a week for seven weeks (chemo once or twice weekly). Hmm… interesting how the best protocols align perfectly with the work week.

For that I need to be scanned and measured for a mask that delivers the radiation precisely where needed. How much would that cost, I asked. Frye had no idea.

“Ballpark guess?” I asked, “I mean is it under $1,000 or over $10,000? So far our experience is that doctors have no idea of costs… ever (well, maybe if they’ve been sick). He left and had a receptionist work on a quote.

It takes 6 days after being measured to do all the calculations and make the mask, so we’re paying around $5,000 to do it on December 27 (assuming I don’t go another route), so I’ll be able to start treatments on January 2 or 3.

I could wait six days longer to get measured for the mask – when I will I have insurance — but this is an aggressive cancer.

However, I can’t get fitted for the mask without seeing a dentist. If any teeth need serious work it has to be done before the mask is made and before treatments start. Later, thanks to permanent damage from the radiation, working on my teeth might shatter my jaw, which would mean a day-long operation to take bone from elsewhere to rebuild it. We want to avoid that.

Other likely side effects of the radiation? Hearing loss, thyroid damage, damage to salivary glands, tooth decay, lymph glands destroyed… well, you get the idea. Then there are the side effects of chemo, which are too many to list.

My legs should be fine so, if all goes well, I’ll be hiking in the desert without saliva by summer.

Frye puts the odds of survival at 80%, which is better than I had guessed, but still a few percentage points worse than a round of Russian Roulette with a six-shooter.

Now that has me thinking… If we can start a national movement to get people to challenge every medical bill until it is fully explained, may, just maybe, things would get so slowed down in the back offices that they might start issuing understandable bills.

I have to see a dietitian specializing in Cancer care this coming week as well. She only charges $35.

New Estimate: Out-of-pocket $10,000 this year, $20,000 next year, plus the insurance premiums.

Insurance will cover much of the cost, I hope, but who really knows? Even when the radiation oncologist asked which of two labs I wanted them to send blood to, I had to go home and research to discover that my insurance would cover only one (and then call back to the doctor’s office to tell them which one).

Today I spent an hour trying to figure out if prescriptions at Walgreen’s will be covered. The people at Walgreen’s didn’t know, the Ambetter Insurance website doesn’t have the information, and they don;t answer the phones on weekends.

I did discover that they cover two of the chemo drugs I’m most likely to use. I just hope there isn’t an uncovered one prescribed that costs $150,000 (that’s what Keytruda costs for a year).

Treatments have to be pre-approved by the insurance company. Monday I have to call to see if that can be done before the policy is in effect, in order to start treatments on January 2nd. If it’s not possible I don’t really have coverage as of the 1st (a point I will have to make).

Oh, and I got the bill for the biopsy lab work today. It cost $1,072 for someone to look at my bit of tissue and tell me it’s cancer. I’m going to try for a discount on Monday. That’s the same lab work the receptionist at Radiology Ltd insisted was included in their $644 charge.

Oh, and the manager of the health care center called. After working at it all week she still doesn’t know what the charge on my PCP’s bill is for, but she said, “I’ll keep working on it and call you when I know something.” I may have to call back in a week to suggest that it would be easier for her to just cancel the bill than to try to understand it.

It’s going to be another busy week, but tomorrow, after five or six hours of research, I’m going to take it easy.

Continued here: The Lump on My Neck — Part Two