I went to the cardiac surgeon the other day. I explained about the money problem. He apparently understood. Wow. A rational, friendly guy. With whom I had a normal conversation. I’m not used to that. I kept waiting for hostilities to break out, but they didn’t.

We put together a sort of plan. I need to reorganize my health insurance so I can afford the surgery. This means it will have to be after the turn of the year. In any case, it will take me that long to figure out how to get through to Medicare while the government is closed for business. I’m trying to stay calm, but I’m screaming inside.

The doctor said since I’ve made it this far — and I can breathe and am not all swollen with water retention — I’m likely survive another few months. How comforting is that?


Meanwhile, I have nightly dreams I’m drowning in my sleep and can’t breathe. It’s my fear throttling me. Even though I’m essentially asymptomatic, it doesn’t make the fear go away. I control while I’m conscious, but at night, those demons are fast.

Diagram of the human heart 1. Superior Vena Ca...

The good doctor found it puzzling. I should be symptomatic as Hell. Go figure, right? My mitral valve is barely working and the aortic valve is 75% blocked by an over-developed muscle in the left ventricle. Because the mitral valve is not working, the muscle has had to work extra hard — apparently for some time — to move blood around. Which has made it grow big enough to block the aortic valve. In addition to replacing the mitral valve, they have to do a little creative slice and dice on that muscle. The fun never stops.

The lack of symptoms had the doctor looking at me funny. He kept checking for signs of swelling in my ankles and wrists. There wasn’t any. “You sure you aren’t taking medication?”

“Just hydrochlorothiazide … 25 mg. Standard dose … been taking it for years.”

“No Lasix?”

“No. I have a recliner. I keep my feet up. You know, about a year ago, I was having a really big problem with swollen ankles. I looked like I had elephant legs. Then it went away.”

“Just … went away?”

“Yeah. Just went away.”

My Surgeon who isn't too busy to see me.

My Surgeon. He isn’t too busy to see me.

“That’s strange. Symptoms don’t usually just … go away. Not without medication. And you’ve seen your cardiologist?”

“No. My cardiologist is too busy to see me until next February.”

“Right. I forgot. You have a phantom cardiologist.”

“Yeah. He seems to be the only game in town, so to speak and he’s a very busy man. So I haven’t seen a cardiologist at all. Just you. And a nurse practitioner. Who didn’t mention the whole thing with the aortic valve. I think she was 12. Barely in puberty.”

Laughter. Not guffaws. More like amicable chuckles.

“Well, when you get your insurance straightened out, we’ll get you scheduled. Get your teeth taken care of in the meantime.”

“Will do. And thanks.”

Maybe I don’t need heart valves? Perhaps I could skip this whole thing? Ah … ephemeral dreams of improved health. I dream of surgery not done with my life nonetheless lived.


I have a high IQ. I know this. I don’t say this as a brag, but as an illustration of the problem. I spent my professional life writing highly technical documents which means I know how to read a document too. I need to switch from my “Medicare Advantage Plan” — the ultimate oxymoronic misnomer — to straight Medicare backed by a Medicare Supplement Plan and a Part D Prescription plan. Which is what I had before I changed to my current horrible plan.

medicare confusion

When I signed up for this plan exactly one year ago, it had maximum out-of-pocket costs of just over $2200. Next year, it would be $6700+. They haven’t raised the premium, just reduced the benefits. We do not have $6700 and could not raise it if we sold everything we own. So I need to change plans. I have to get something that will cover me really, even though the premiums will be more than triple what they are now. Mind you I can’t afford higher premiums, but I’m out of choices. My life’s on the line, so I have to make this work.

This is not A.C.A. — aka Obama Care. This is regular old Medicare. It was like this when I first signed on (2004) except the premiums and deductibles were much lower and covered more.

They’ve been raising premiums and reducing coverage for the past decade. Bit by bit, tiptoeing around — like we won’t notice. They think we are stupid.

Until two years ago, I had MassHealth (Medicaid Massachusetts-style). I really didn’t notice because MassHealth picked up whatever Medicare didn’t. When they took away MassHealth, holy moly … talk about getting whacked with a two-by-four. My head is still spinning.

Meanwhile, I have to get an answer to this question: “What steps do I need to take to change from my current medical plan, with which I am dissatisfied, to a better plan? To whom do I need to talk? What forms need filling out?”

I cannot be the only person unhappy with their plan who wants to switch. Open enrollment starts on October 15, so I’m right on target for taking care of business. I’m good at this kind of thing. Usually. Yet fifteen minutes into trying to get an answer to this question, I find myself staring at asterisks that do not lead to footnotes or other information. Statements telling me “This plan may not cover all medical expenses.” With no explanation of what that means. Doesn’t that sound a bit threatening to you? Sets my teeth on edge, lemme tell ya.


I’m smart. I’m not senile. I’m not on any mind-altering substances but my brain is turning to jelly and I’m ready to start banging my head on the table. Who wrote this stuff? The only way you can write documentation this bad is (a) be a really bad writer, and (b) not know what you’re talking about. Only with that precise combination of poor writing skills and misinformation can you produce documentation which informs no one while confusing and infuriating everyone. It doesn’t have to be this bad.

Hire me. I’ll rewrite it and when I’m done, pretty much everyone will be able to understand it. It’s not such a leap to ask that information be written clearly and organized logically.

Considering Medicare is aimed at the elderly and infirm and I — not all that elderly or infirm — cannot make heads or tails of it? Pity the folks who’ve had a stroke or just aren’t good at deciphering complicated documents.

Hello My Government! Yoohoo out there! Show some compassion. Hire some writers. Make informed decisions possible. This stuff is life or death, y’know?

Weekly Writing Challenge: The State of the State: Dying of Laughter

It took me five months to get a new oncologist from Fallon, the HMO that runs my Medicare Advantage plan. It began last November when, in a necessary cost-cutting move, I gave up my Medigap policy and signed on with Fallon Senior Medicare Advantage plan.

Dana Farber lobby

To get started on the wrong foot, the customer service person who signed me up gave me incorrect information. She had assured me Dana-Farber in Milford was covered by Fallon. This turned out to be untrue and left me without an oncologist. I was annoyed, but not wildly upset. They said I could see my Dana-Farber oncologist once more and I figured I’d get a referral from him.


That turned out to be overly optimistic. My oncologist didn’t know anyone at UMass in Worcester — Fallon’s only cancer care facility in Worcester County. Like many satellite facilities  for larger institutions, it’s hard for them to keep ambitious young doctors on staff. They stay a while, then move to better paying jobs at bigger more, prestigious hospitals. A few doctors stay, usually those who live locally, but most move on. It’s a bit of a revolving door, personnel-wise, though it really isn’t their fault.

Even this didn’t faze me. I’m past surgery and chemo. I’m in the maintenance phase. I go for checkups and blood tests. Once a year they scan me to make sure nothing is growing someplace it shouldn’t. Nonetheless, I’m only 2 years from the initial discovery of two separate tumors and there have been a lot of cancer deaths in my family. Mother. Brother. Both maternal grandparents and I’ve had cancer twice, so there’s no reason to assume I’ll ever be entirely safe. I’m not acting crazy because I feel it’s a bit soon to stop monitoring me.

My doctor assured me that the facility is good, but he couldn’t help me find a new doctor. He suggested I call the HMO and ask them who do they have in medical oncology with a speciality in breast cancer.  I already knew my PCP couldn’t give me a referral because she said so. She had suggested I get the referral from my oncologist. Back to square one.

I called Fallon.

She said — this is a quote: “We do not list our doctors by specialty.”

“What,” I asked, “Do you list them by? Alphabetically?”

I mean, seriously, if you don’t list doctors by specialty, how in the world can anyone get an appropriate referral? This is supposed to be senior health care organization. It’s not as if cancer is a rare event. There’s a lot of it going around. I patiently — really patiently — explained I needed a medical oncologist specializing in breast cancer. That yes indeed, cancer doctors are highly specialized and it really did make a difference and no, there’s no such thing as “just an oncologist.” If ignorance was bliss, this was one deliriously happy young woman.

After I explained for the dozenth time it would not be okay to send me to “just any” oncologist, that I wanted someone who knew about my kind of cancer and moreover, I want a doctor who has been out of medical school for at least 5 years. I’m not ready to put my life in the hands of a baby doctor. My life, my choice.

I spent over an hour trying to make some progress, being repeatedly told I needed to go to my primary care doctor and get a referral from her. Despite my explaining she had already told me she didn’t know the doctors at UMass Oncology, it was like talking to a doll who only has three or four recorded phrases. By now, my good nature was gone and my fangs were showing.

It took another 45 minutes and further reiterations of the same information to get transferred to a supervisor. I told the story again. Finally, she said she would “research the problem” and get back to me.

I called my doctor’s office, explained that I hadn’t been able to get a referral from the oncologist at the Dana-Farber, nor could I get a referral from Fallon and they seemed to be of the opinion my family doctor should send me to the right doctor even though I had told them that Dr. S. didn’t know the doctors in Oncology at UMass in Worcester. I needed someone to step up to the plate and help me.

A few hours later, my doctor’s office called back and gave me a name, an appointment, and a phone number. The appointment was for just a few days hence, also my birthday. I didn’t want an oncology appointment on my birthday. Nor did I need an appointment immediately. I had just had my big annual scan and wouldn’t need to be seen again for six months, so I called the doctor’s number to change the appointment to something sensible.

I got transferred then transferred again and wound up talking to Lisa, the administrator for the Breast Cancer Care department. It turned out that the doctor with whom I’d been booked was a surgeon, not a medical oncologist and that in any case, they couldn’t do anything without my medical records which were scattered through three hospitals and a doctor’s office — each located in a different town.

Lisa said not to worry, she would take care of it. Remarkably she did. She changed the appointment and booked me with a doctor who specialized in my type of cancer, called all the various offices and ordered my medical records send to UMass. Said if I had any kind of problem, give her a call and she’d fix it because women with cancer shouldn’t have additional problems because they already had quite enough. My opinion precisely. But wow. What a difference a woman with intelligence and a willingness to actually provide customer service can make!

Shortly thereafter, my doctor’s assistant called asking why I’d cancelled the appointment she had made for me. I explained that she had booked me with a surgeon. I’d already been surged so I needed a different kind of doctor. She was pissed off because it hadn’t been easy to get that appointment and seemed impervious to the difference between a medical oncologist and a breast cancer surgeon. I explained — again — that a surgeon would not be able to help me because I don’t need a surgeon. I have no breasts, but I really do need my medical records … and she said yes, Lisa from UMass had called about that but she wasn’t sure where to send them.

“Didn’t Lisa tell you where to send them?” I asked.

“Yes,” she said.

“Then … why don’t you send them where she told you to send them? What am I missing?”

“But you cancelled the appointment I made!” she said, still angry.

“I changed the appointment. Really Lisa changed it because the doctor to which you were sending me was the wrong doctor. Now I have an appointment with the right kind of doctor. I’m not blaming you, so why are you mad at me?”

And so we went back and forth for a while until she finally accepted she had booked the wrong doctor, but I assured her that I truly appreciated her efforts. Since this is my life, getting the right doctor was my goal regardless. Sorry to upset you.

“Oh,” she said. Not a “sorry” in the batch.

“Right,” I said.

I’ve gotten a lot of calls from Fallon since then, all of them wanting me to explain again why I wasn’t happy with their customer service. I said a patient should be able to call and get names of appropriate doctors and at least some basic information about the doctor, like how long he/she has been in practice, their specialty, from what medical school he or she graduated and on which boards he or she is certified. And this information is fundamental to medical care and I am entitled to this information and they are obligated to provide it. Nor, I pointed out, is this such a difficult thing to accomplish. I could produce an appropriate data base in a couple of days using the internet and making a few phone calls. The problem could be solved with a memo sent to all customer service personnel in an email. Lives could be saved and it wasn’t an insurmountable problem. It just needed someone to recognize they had to do something and just do it. Although everyone agreed with me, I had the definite impression that no one would do anything about it. Inertia always seems to win over doing the right thing.

The day was only half over and I was not done with medical misinformation.

When I finally finished the marathon calls to Fallon, I got a call from Humana Insurance to remind me I hadn’t made a  payment this month.

I hadn’t made the payment because I cancelled the insurance when I switched to a Medicare Advantage (HMO) program. I didn’t want to switch but I couldn’t keep paying the almost $200 a month for my Humana policy.  When, at the end of November, I signed up with Fallon, I called Humana and explained I was changing to an advantage plan and needed to cancel my Humana policy as of the first of the year. I was told that as soon as my new program kicked in, the policy would automatically be cancelled and there was nothing more I needed to do.

“Are you sure?” I asked.

“Absolutely,” I was assured.

So, there it was, the middle of March and Humana is harassing me for money I don’t owe. When they called again, I finally got a person on the phone and pointed out I had called and cancelled at the end of November 2012.

Western Digital 3TB My Book Essential External Desktop Hard DriveThe representative said that he could see in his records I’d called to cancel, but I’d been given incorrect information. I was required to send them a letter; I could not cancel by phone or on-line. I pointed out that I signed up on-line and on the phone, so why did I have to write a letter to cancel? “Those are the rules,” he said.

“I want to speak to your manager,” I said. He explained that the manager would tell me the same thing. I pointed out that I didn’t care, I wanted to talk to a manager, and I don’t owe them any money. He said I’d have to file a dispute to not pay them because although it was their fault and they have it in their own records that I called in advance to cancel the policy, it didn’t matter. I was going to have to fix the problem, even though they were the ones who had caused it.

I thought my head was going to explode.

The manager reiterated that indeed they had given me incorrect information, but now it is my problem. Tough luck lady.

I hung up before I said something really rude. I believe there was steam coming out of my ears.

I took a slow, deep, cleansing breath, then called the other customer service department, the one whose number is printed on back of the membership card.

The lady I spoke to looked it up, agreed they had given me erroneous information, contacted the cancellation department and assured me it was fixed. I have a name and a number in case it isn’t. I pointed out that until this snafu, I’d had positive feelings about Humana and would have recommended them.

They had handled my claims promptly without haggling, but they had burned a whole year of good will in about an hour. I pointed out that I was not going to pay them any money because I didn’t owe them any money and they know it. I wasn’t going to send any letters or dispute any charges. They could put it all where the sun doesn’t shine. And thanks for everything. Have a good day.


The Humana Building

It had grown dark while all this was going on and as the day had gone from morning to evening, my hard drive had been doing a full system back up. It was, I was glad to see, nearly complete.

As I hung up the phone, panting with exertion though I hadn’t gotten up from the office chair, the backup announced itself finished. I registered the hardware, did whatever I thought I was supposed to do. Garry got back from the grocery store and I put the stuff away. The dogs started howling for dinner. Life closed around me. The dog’s dinner was half an hour late and they were telling us they were so hungry they were going to fall over from weakness, poor darlings. They lie like dogs. Of course, they are dogs, which accounts for it.

So passed my day. Now, it’s eight in the evening. Either everything is fixed or it’s not, but I’m done. Totally and completely out of gas, I am ready for some mindless entertainment. Please,  do not give me anything to think about for at least 24 hours.

How come so  many blatantly incompetent people have jobs? Why are they working when so many others are unemployed?

Something is terribly wrong. I just don’t have enough strength to figure out what it is, much less fix it.

There ARE stupid questions …

President Lyndon B. Johnson signs Medicare Bil...

President Lyndon B. Johnson signs Medicare Bill at the Harry S. Truman Library, 1965 (Photo credit: Wikipedia)

Let me start by saying that I thank God and Lyndon Johnson that we have Medicare because without it, I would not be sitting here and writing this. I would be long since dead and buried. For the most part, Medicare is surprisingly well-administered. You can call them any time of the day or night, 24/7 and someone will try to help you. Medicare works better than any other part of the government I’ve ever dealt with. It is easier to work with than any of the expensive private insurers I had while I was working. Moreover, the people at Medicare who answer the phones are accessible, pleasant, patient, and well-informed which is a lot more than I can say for any private insurer I had. When they say they are going to call you back, they actually do call you back. Amazing.

I spoke to them last week and they couldn’t help me with this because it’s a local thing. Supplemental and Medicare Advantage programs are available from specific vendors in designated areas. So they had to pass me on to local representatives.

You have heard it said, I am sure, that there’s no such thing as a stupid question.

That is not true.

I was trying to see if there is a less expensive alternative to my current Medicare supplement, aka Medigap policy. My goal was to reduce my monthly medical insurance costs without compromising the quality of my medical care.

I could have found what I wanted if I lived almost anywhere else. But we live out in the country and there’s not much available.  The plans would be good enough if you don’t get sick, or whatever is wrong with you is common and can be managed your PCP or a very inexperienced specialist. Definitely not a description of me.

To make things more complicated, we live close to Rhode Island, so most of the doctors that come up using all these plans’ search engines are in Rhode Island, not Massachusetts. The law governing medical care and prescription coverage varies hugely between the states. These search engines don’t know about state lines and just search within a designated radius you specify. Which makes the searches useless. Someone needs to do something about this. I can’t be the only person living near a state border who is on Medicare, can I?

Now, for the stupid questions.

The Scene

Marilyn is sitting in front of the big monitor in her office. A cup of coffee is on the right, partially blocking the screen, and a glass of electrolyte rich zero calorie sports drink is on the other side. I have been roaming from provider site to provider site in the hopes of finding something that might work for me. Finally, unable to obtain any meaningful results, I fill out the form asking for more information. The phone rings. It is a digital phone, so really, it yodels.

Yodel yodel eeee. Yodel yodel ooooo.

Me, picking up phone: “Hello?”

Her: “May I speak with Marilyn Arstrong?

Me: “You got her”

Her: “I believe you inquired about Health Care options with ….?”

Me: “You’re fast. I’m still on your site.”

Her: “We have a variety of programs. How can I help you?”

Me: “I have a Medigap program, but I’m hoping to find a something less expensive, preferably a Medicare Advantage program, but there doesn’t seem to be much choice in this area.”

Her: “Do you have a computer?”

(Pause.) I just filled out a computer inquiry and said I was still on her website. It was dumb, but in the name of charity, I let it pass and moved on.

…. back and forth … back and forth …

Me: “So, in short, you don’t have a Medicare Advantage program that would work for me. It wouldn’t cost less and it wouldn’t let me keep any of my doctors or hospitals. It would be a Medicare Disadvantage plan. Why are we having this conversation?”

… back and forth … back and forth …

Me: “So, you don’t have anything that meets my needs. Have I got that right?

Her: “Do you live in a rural area?”

Me: (Pause) “You could say that.”

Her: “You might be okay with a more basic Medigap policy. Do you think  you are going to be sick? Do you expect to need hospitalization?”

(Very long pause.)

Her: “Are you still there?”

I did not say that I was thinking. Wit and irony need to be used selectively. There are people on whom it is lost.

I wanted to say that I was considering a mild stroke in time for Christmas, but if they were having any specials on particular non-lethal diseases, I’d be willing to consider something heart-related, perhaps a minor infarction. I thought of saying that I was not planning any major medical incidents for at least a year, but I might, just for excitement have a medium-to-serious auto accident … but I doubted she’d see the humor. She was trying to help me. Ineffectually, but asking me if I was going to be sick? Really?

Does someone own a medical crystal ball. If they do, they should patent it because it is worth billions.

I still don’t know what I’m going to do, but I signed up with a different prescription carrier who I hope will save me a few bucks next year. Meanwhile, tomorrow is another day. Maybe I’ll think of something else. I hope that none of these options require that I know if I’m going to get sick. Because I haven’t a clue.