They'll Have to Pry Google From My Cold Dead Hands

Just because I’ve been diagnosed with a serious disease does not mean I intend to give up my favorite hobby: hypochrondria. There is nothing in life so dire that I cannot make direr if you give me a minute or two.

For instance, a couple of weeks ago, I noticed a funny bruise on the back of my hand, which appeared the next day (to my horror!) to be spreading toward my wrist. I went immediately, 0-60 in 1 second flat, to flesh-eating bacteria. Did not hesitate, did not pause, did not for even one moment consider that perhaps I had bumped my hand and, well, bruised it.

I was still researching flesh-eating bacteria on Google two days later and trying to figure out how much of my hand they would need to amputate to save my life, when I noticed the bruise was gone. Another narrow escape!

When the neurologists were recently trying to determine which of several diseases I might have — so many to choose from! — I made the logical assumption that I probably had them all. Or, at least two or three, enough to account for all my symptoms, which ran to two printed pages, in 11 point type, single spaced. Heaven forbid that there should be a twitch on my body left unaccounted for.

Having lived in a medical fantasy land all my life, it feels a little strange to actually have something real, certified as genuine by the medical establishment. But then, as they say, even paranoids make real enemies sometimes.

Once, I not only convinced myself that I had pneumonic plague, I managed to convince a couple doctors, too. I ended up in isolation at the hospital, with everybody who came into the room wearing masks, paper jump suits and shower caps, and disposing of them before they left. It was very dramatic.

There was a logical reason for my assumption, of course. I had recently been to Sequoia National Park, and had observed a sign there reading, “WARNING: Pneumonic plague has been found in some rodents in the park. Avoid sickly animals. If you develop a fever within 10 days of your visit, see a doctor.”

Well, you don’t have to tell me something like that twice.

It has always been my policy to avoid sickly animals unless they’re my own, but I had petted a darling little kitty at the motel, and, wouldn’t you know it, after I returned home, I developed a fever. Reviewing my visit to the park, I decided that the motel cat had seemed perhaps a little on the lethargic side. Then I found I couldn’t breathe very well, so I called my doctor and told him the whole sad story . . . Sequoia, the sign, the cat, the fever of 103, etc.

I was told to head to the hospital, where I was rushed into isolation. As I lay on the hospital bed, the attending doctor told the assembled crowd that I might have bubonic plague. I raised my head feebly and tugged at his sleeve. “No, it’s pneumonic plague,” I gasped, “new MON ick, not bubonic. P-N-E-U-M-O-N-I-C.” I fell back exhausted. He looked a little irritated, and said, “Whatever.”

It turned out to be garden-variety pneumonia, which they quickly cured, but to this day, I still believe that cat was trying to do me in. While lying in the hospital in lonely isolation, I occupied myself by composing my obit, “Cat Lover Dies of Plague.”

I would like to see a medical drama on TV that employs the kind of inane conversations I get into in hospitals, such as discussing whether I am dying of pneumonic or bubonic plague. For another instance, I had a genuine heart attack a few years after my faux plague, and was lying face down on the bathroom floor chewing two aspirins when the paramedics arrived. (One of the paramedics said, “We don’t need a gurney, she can’t weigh more than 120 pounds, I’ll carry her,” and I thought, “There is a God! I’m going to die in the arms of someone who thinks I only weigh 120 pounds.” He picked me up with a surprised grunt — I’m small but I’m dense — and staggered with me out to the ambulance. His estimate of my weight was off by about a stone, as they would say in England. A very large stone. Actually, more like a boulder. But I digress.)

Once at the hospital, the emergency room people frantically started attaching needles and tubes, and one of the nurses said, “Get her an aspirin.” I tugged at her sleeve and said, “I already took two aspirin at home,” and she said reproachfully, “You don’t need two aspirin, you only need one,” and I said, “I’m sorry, I didn’t know,” and she said, “That’s all right, but next time, remember, you only need one,” and I said, “OK.”

Wait. Next time?

Later, while lying bored silly in the critical care unit, I updated my obit yet again: “Heart Attack Victim Didn’t Know Any Better.”

Don't Bogart That Bon-Bon

After neurologist #6 diagnosed me with ALS and I stopped sobbing long enough to catch my breath, he said, “The most important thing you can do now is eat. Forget diets. Forget cholesterol. Forget calories. Just eat, eat, eat. You don’t want to lose any more weight.”

Which set my mind a’racing, mulling the possibilities. I had already lost 24 pounds since the ALS symptoms started two years ago, which I thought was a neat side-effect of whatever-it-was-I-had, but apparently this was not a Good Thing. And here I’d been so proud of once again being able to locate my ribs! I’ve been on a diet since 1948, when I turned 13 and first decided I needed to lose five pounds. I’ve been trying to lose those same five pounds, or multiples thereof, for the last 60 years. In fact, trying to lose five pounds has truly been my life’s work. My calling.

And now, this ALS thing is upsetting my entire world view.

I said cautiously, “Sooooooo ... does this mean I can eat See’s Candies all day long?”

He said, “Absolutely.”

“Really! How about cheesecake?”

“Absolutely.” He eyed my wrinkles and white roots, and added, “This may shock you, but you might want to consider medical marijuana, just to help your appetite.”

I tried to look shocked in an age-appropriate manner, but it’s hard to pull that off when your face muscles are all going in five different directions. In fact, when I try to achieve any specific expression these days, all I can usually summon up is a little light drooling, like a bemused St. Bernard.

But shocked I was. After all, I’ve been clean and sober for 28 years and 10 months (who’s counting?), and my immediate thought was, “Medical marijuana?!? Where the hell were you when I needed you?” (To help my appetite. Of course! Why hadn’t I thought of that? Doctor’s orders, doncha know. Keeps me alive! Oh, and pass me the Bacardi, too, dahling.)

I was taking notes during all this, scribbling furiously: “Sees pot chezcak eat mor.”

I figured this was just general good advice for any patient who has been losing weight without hardly trying, but then neurologist #7 told me the same thing, and added a little more detail. She said there are only two things proven so far to slow the progression of ALS: One is Rilutek, the med I mentioned in my last blog, and the other is gaining weight. And, she said, gaining weight actually slows the progression of ALS even more than Rilutek does.

Well, now we’re talking, people. If there’s one thing I can do, it’s gain weight. With apologies to Lou Gehrig . . . stand back, I’m gonna hit this one right out of the ballpark.

I am now reading grocery labels more assiduously than ever before, but to opposite effect. I search the bread aisle until I find whole-wheat bread with 120 calories per slice. No more wimpy 70-calorie breads for me. I read every label in the ice cream section, with Häagen-Dazs the clear winner at 270 calories per half-cup. Into the basket it goes, to be added a cup or two at a time to my dinner smoothies. I’m scarfing down cans of Ensure and similar supplements, with scoops of body-builder protein powder tossed in with them in the blender, along with the ice cream and cups of chocolate syrup. I pile fresh fruit into the blender for lunch, with protein powder, more Ensure, liquid vitamins, and everything I can find in the produce section that appears to be of a vaguely blendable nature. I snack on cheesecake or lemon meringue pie every chance I get.

If it weren’t for the fact that this disease is progressive and fatal, this would actually be a pretty great lifestyle. (Every ointment just has to have a little fly in it, doesn’t it?) I do occasionally miss eating real food, which I can no longer chew or swallow very well, (except for soggy toast, scrambled eggs, and the aforementioned lemon meringue pie) but this regimen ain’t half bad.
And, fortunately, I had saved all my fat clothes, just in case.

Moral: Never, ever, ever throw out your fat clothes. I have now gained six pounds in eight weeks. Take that, ALS! At this rate, I’ll live forever, or until I can’t squeeze into the ice cream aisle any longer. Or, until Häagen-Dazs goes out of business, which ain’t gonna happen on my watch, if I can help it.

(But, damnit, Janet, I do miss seeing my ribs, which are once again slowly disappearing somewhere inside the outside of me. But, I guess you can’t have everything.)

O Canada!

O Canada!

Our friend and neighbor land!

True patriot love in all thy sons command.

There is only one medication so far that has any effect on ALS. It’s called Rilutek, and it slows the progression down somewhat. It costs $1,000 a month at my local drugstore.

With glowing hearts we see thee rise,

The True North strong and free!

From far and wide,

O Canada, we stand on guard for thee.

It’s $500 a month from Canada, including shipping and handling.

God keep thy land glorious and free!

O Canada, we stand on guard for thee.

O Canada, we stand on guard for thee.

Now, my insurance does happen to pay for this med, although the co-pay is $450, which kinda takes your breath away. Just think what the insurance company could save if they used a Canadian pharmacy. At this price, I hate to actually swallow and excrete these pills. I’d like to have them set in a tiara and swank around Albertson’s in it. I also use an inhaler to keep my lungs clear. It costs $340 a month at my local pharmacy, $32 a month from Canada.

And don’t even get me started on Lipitor.

I don’t begrudge Big Pharma what they charge for Rilutek. It’s only used for one disease, and we’re lucky someone is willing to make it at all. So, here’s a big shout-out to the manufacturer. Keep those little white pills coming! Charge whatever you have to! I’ll eat cat food! Hell, I’ll eat goat chow! I don’t care!

But this is about Canada. Without our friends to the north, there probably wouldn’t be a senior citizen left standing in the U.S. You’d think Big Pharma would want to keep their best customers (us elderly and/or sick) alive as long as possible with affordable prices, so that we can go on buying their products. But nooooo. I’m one of the Depression Babies, and there were so few of us, what does Big Pharma care? They’ve got the Baby Boomer stampede coming up hot on our heels, and the pharmaceuticals can afford to kill off all the Depression Babies, plus about half of the Baby Boomers, and still make a gazillion bucks a year.

(I was born in 1935, by the way, which had the lowest number of American babies born in any year in the 20th century. That’s why it was called the Great Depression. People were so depressed, they even stopped having sex. We’re a small cohort, but we’re choice. So far as I know, only three American babies were born in 1935: Elvis Presley, Woody Allen, and me. There may have been some others, who have slipped my mind, but not many . . .)

Plus which, not only are the Canadians smarter at politics than we are (they figured out how to stop the gouging by Big Pharma by simply having the government negotiate prices—duh!), but Canadians are a lot nicer than we are, too. One example of this is that they don’t start as many wars. In fact, name one they’ve ever started. (They’ve had some squabbles among themselves, but what country hasn’t?)

And it’s not that they don’t start wars because they don’t like to fight. Did you know the Americans attacked Toronto in 1813? Turns out that was a really bad idea. The Canadians won big time, as Rummy would say. We also attacked Montréal in 1813. (This was all connected to the War of 1812, doncha know.) Montréal was another big mistake: 460 Canadian troops turned back 4,000 American invaders!

(It was called the War of 1812, BTW, even though it was obviously not confined to that year. Just as the 1994 earthquake in L.A. is called the Northridge Earthquake even though the epicenter was in Reseda. “Northridge Earthquake” has a nicer ring to it than “Reseda Rumbler.” Likewise, “The War of 1812” just plain sounds better than “The War of 1812-’13-’14 and part of 1815,” and it fits into headlines and book titles better.

I’m not saying that Canadians are superior to us in every way, I’m just saying, a little appreciation is in order. And if you think I’m kissing up to the Canadians just because I love their pharmacists, you are so right.

But, all that aside, there is good news about the treatment of ALS. Turns out the most successful treatment known so far is . . . hold on . . . GAINING WEIGHT!!!

We’ll explore this interesting turn of events next week.