How Lupus Mends A Broken Heart

The day after Thanksgiving I woke up with a sinking realization that my free-spirited, motorcycle-riding, on again, off again, maverick lover Frank is now permanently hooked up with a conventional woman who has taken over his kitchen and calls him hon. And worst of all, he seems happy.

There was only one thing to do. Immediately get to work. I was supposed to complete a chapter for a textbook on September 1st, and had already extended my deadeline twice, so it made sense to at least start working on that. I performed a literature search on pubmed, employing clever, strategic keywords, and started downloading articles suitable for my assignment on Lupus and Heart Disease. Ahhhhhh, heart disease. On that, as you already know, I am an expert. But lupus?

I will try to explain the significance of lupus in my life. It is probably obvious to you why Jennifer Aniston never committed suicide, after a long string of rejections by gorgeous men. Why should she bail out? She is a movie star. And so, in case you were wondering, with an even longer string of rejections from a bunch of mediocre, pot-bellied old coots who could not hold a candle to Brad Pitt or John Mayer, how come I don't commit suicide, and in fact why do I always sound so cheerful? Good question. Here is the answer. I am a google star.

Google lupus. Try it. Several things will happen. First you will see that you get at least 2,920,000 hits for lupus. And if you google "lupus and my name" you will get 42,000 hits. No kidding. I own 1.4% of all the google hits on lupus. You will see page after page with my name on it. Trust me, I do this all the time.

So I may not get the guy. I may not know anything about love. But I am an expert on lupus. And heart disease.

This is why, the day after Thanksgiving, although my heart had been a little diseased when I first woke up, I was already feeling a little better after working on my lupus chapter for just a couple of hours. Now I was ready for some definitive action, so I called Dr. Kaydees office and made an appointment to be evaluated for a facelift. You may understandably be wondering what any of this has to do with romantic advice, the alleged focus of my column.

Everything. There is no point in letting romance into your life unless you are equipped to navigate its underbelly, whereupon the dank slugs of rejection dwell (is that good writing or stupid?) And the whole point of today�s column is that the further you get from a successful love life (for example, if you get dumped and invited to Thanksgiving dinner with your clueless nincompoop's new girlfriend, or if you get bilateral mastectomies or if you are about to die), the more important it is to keep moving! Take action!

Here is an illustration from one of the darker periods of my life, right after I left my husband in full possession of our beloved 2,000 square foot apartment in Manhattan, moved to Oklahoma and got cancer. One Friday, while they were still working me up, I was told that a CAT scan of my liver was equivocal and would need to be repeated the following week. Naturally, being a doctor and knowing more than is healthy for anybody really sick to know, I was scared.
There were only two possibilities. Either the equivocal spot on my liver was nothing or it was something. And if it was something I was going to die. Soon.

But if it were nothing, I might just have to get drastic surgery and some very nasty chemo and live for a good long time. And what was immediately clear to me, was that with so much at stake, it was barbaric to leave me on the hook for the entire weekend. What is the matter with outpatient radiology suites? They can't hire a Saturday crew?

I couldn't sleep. I couldn't eat. I couldn't even work. My concentration was so bad, I couldn't even watch HGTV. By 10 AM on Saturday morning, I knew that action was required. I decided to go shopping. But what kind of shopping? It had never occurred to me before that the choice of where to shop would be so loaded if you were waiting all weekend to find out whether you are going to die. Obviously I could not go to a grocery store. The long lines at the grocery store would be impossible to wait in for a person as frantic as me. A book store was no good either. I was so freaked out I would not be able to focus my eyes to read the titles, much less the full length jacket blurbs. The mall was out of the question. How can you try on clothes and look critically at your body in a full length mirror when you know you might find out in a few days that you are going to die, and even if you get good news you are still facing the removal of both your breasts and going bald from chemo. This was not a situation propitious for trying on clothes.

Furniture. I had just moved into my house a few months before, and there was still almost no furniture in it. In that I tend to work very long hours. I believed that I deserved a little bit of furniture even if I was going to die. Or maybe especially if I was going to die, since in that case I might have to quit work and spend some time at home while doing whatever you do to die. And my daughters were growing up, they could use anything I got later. With these morbid thoughts I got in my car and drove to Wallace�s, the nicest furniture store in Oklahoma City.

I figured that if I was going to die I was at least allowed to have a really pretty living room couch, something elegant yet cozy, tasteful, yet comfortable, suitable for napping on in the afternoons while preparing to croak. And, come to think of it, for receiving my various ex-boyfriends for tearful farewell visits. And I would probably need a coffee table too, for drinking tea while wasting away, and of course for the farewell visits, especially if somebody brought wine. And a comfortable chair for the son of a bitch. All of them.

I spent the entire afternoon wandering in Wallaces, and it was perfect therapy. There was one queasy moment when I fell in love with the most gorgeous dining room table and chairs but I already had a functional old formica table in the breakfast room, and I did not think it made sense to set up my dining room if I might just die afterwards. So I was scared to buy the table, in case it would jinx me. But I wrote down its style and identification number on a little green index card, it was the rose table XJ10034. I put it in my purse, in case I changed my mind. My dining room was, after all sort of a joke at the moment. The previous tenants had left a beautiful chandelier hanging in the middle of the room and there was nothing else there. Sometimes people walking through the room, such as ex-boyfriends, would jangle the crystals around as if my relationships were not precarious enough.

In the end I picked out the perfect couch for me, an optimal chair fit for all the sons of bitches, and a coffee table that was on sale. Each piece was in exquisite taste and yet comfortable. While I was arranging for the delivery to be the day after my CAT scan, the saleslady offered me a payment plan.

"You see," she said, "You can pay it off over 24 months, interest free. And if for any reason during that period your circumstances change, you lose your job or something, and if you can prove it, you won't owe a thing."

"What if I die?" I asked.

She laughed. "Actually that's one of the riders. If you die, your estate won't pay."

"This is tempting," I said. "But it would be wrong." I paid cash.

On Sunday I was feeling so much better that I made a pact with myself there was no point in worrying about something that could not happen that same day. I knew I was safe from finding out I was going to die for two more days, so I needed a break from worry. I watched HGTV until 8PM when it was time for the Rockford files. I didn't even remember my situation until the end of the Rockford files when Jim turned to Rocky and said "Oh dad, I'm gonna miss you." And you saw Rocky's crumply old face beaming with love as the camera faded out....

On Monday I was in the clinic with my patients all day and forgot all about my own stuff for most of the day the way I usually do, there were so many of theirs to deal with. But when I woke up on Tuesday my pact was over. Something could happen that day and since that had been specified in my pact I was now, legally terrified. I was supposed to see patients only until 11AM and then go get my life or death CAT scan after that.

All but one of the patients showed up, and I was busy enough to lose track of why I was so miserable for much of the morning, even though it kept hitting me with little sighs and pangs. At 11 I put my coat on, and went into the ladies room to put on lipstick, because I learned this from Archie comic books when I was a girl. Do you remember Archie comic books? Archie has a friend named Veronica who was a rich girl. One day she was kidnapped and thrown into a basement. She immediately whipped out her compact and started putting on lipstick saying that "you should always try to look your best for whatever happens next." I have sworn to follow this philosophy and have found it helpful over the years.

However, leaning over the mirror to fix my mouth, I started to shake visibly. The door swung open and my receptionist, Leslie said, "That no-show just showed up."

"Bring her back next week." I said. "I have to leave now. It's important." I wondered if I would even want to see patients next week if I had breast cancer invading my liver.

"OK, I'll reschedule her...." Leslie waved a piece of paper at me. "but she told me to give you this." It was a lab report. The patient had an INR of 7

Translation: in danger of bleeding to death at any moment.

"I'll see her now," I said.

She was standing in my waiting room, a tall, beautiful, blue-eyed blonde, looking like an angel in a silver pantsuit. "Thank God," she said when I came back in, still wearing my coat. "They said you already left."

Now she was gratefully wringing my hand, this gorgeous celestial messenger with big hair and flawless figure who would not have given a little brown mouse like me the time of day in high school. Life is funny. She belonged to me, now. And I belonged to her.

I had already guessed that this was the antiphospholipid syndrome, a life threatening complication of lupus that puts people at risk for strokes, heart attacks and other kinds of blood clots. I had already guessed that she was being treated with a blood thinner called Coumadin and was being terrified by these INR blood tests, which flipped erratically from less than enough to more than is safe.

I am a witch, but I am not prescient. I had guessed this much because it happens all the time in my clinic. They all come to me, these patients, when their doctors get fed up or scared. Not that I know anything particularly useful that any other good doctor doesn't know, but everybody knows that I know what there is to know, so even if all I do is confirm their inability to do anything, it is a relief to them.

And just in case I did live a few more years, I had to be there for these patients. God lets me chase men, but he did not hire me for that.

We sorted her out, drew another INR, sent her to the ER, and I went a little late to my life or death CAT scan, hoping that they would accommodate their schedule for me as I had done for her. I kept my cell phone on and dangling around my neck, since it was likely the ER people would be calling me. Or you never know who is going to call.

Maybe even an ex boyfriend. You never know.

It was freezing in the radiology suite. They made me put on a gown that opened up my bare ass in the back and if you ever go through a diagnostic workup for cancer you will appreciate those are not a girl's best weeks with regards to keeping up with the healthy diet and Wii Fit exercises. They made me drink a quart of dye, which looks like cool-aide and tastes like rat poison. Then they let me wait until my bladder was about to burst and made me go in the machine.

Here is what actually happens at a CAT scan. First they confiscate the purse and the cellphone that you brought in the room against the rules, then you climb up on the metal slab that rolls into the machine. The CAT scan is shaped like a hollow cylindar and they pack you tightly in the middle like a hotdog in a bun. They have you strapped down, covered with a little cotton blanket which does nothing to warm you up, and when the slab rolls into the machine you are buried alive in that tight little space, and so tightly trussed that you would be unable to move even if there was room to.

Of course you immediately start to itch and snot drips out of your nose and there is nothing you can do about that. You are afraid that you might sneeze, but you know that will ruin the image so you try your best not to. And you are worried that the technician is back there pretending not to react to the site of what might now become obvious as a malignant tumor in your liver. And you really have to pee so badly that it hurts. But you know you will be tied up there for a long time, so, all else being equal, it becomes preferable to worry about whether you are going to die than to worry about how much you need to pee.

Then, little by little, the unthinkable occurs. You have to pee so badly that it gains in importance all out of proportion and suddenly you might bargain away your life for a toilet. I know this is hard to believe, but did you ever drink a quart of contrast dye?

They keep rolling you in and out of the machine. Each time you go inside, the round gizmo starts to whirr around you and you know that they are taking pictures and that they staring right at the thing in your liver, whatever it is, the tumor or the benign spot, because they already knew its precise location when you walked in the door, even while they were trussing you like a Thanksgiving turkey they have had lined up in advance to get an image of that spot based on what they saw last week in quadrant X, longitude Y and latitude Z. That's how much privacy and dignity you have.

They can see inside you, all the way down to your prognosis, while you lie blindly there on that cold, metal slab doing your best not to shiver or lick the snot off your upper lip, listening to the machine whir and wondering if you are going to die. And also knowing with a mounting existential despair that if they don't let you pee soon there might be a humiliating accident. And thinking whose liver is this? Whose body is this? Whose bladder is this?

The technician is perched behind a half wall, but not too far away, and she talks to you in a low, soothing voice as if you are a child. "That's great Della, now you just keep holding still just like that. Don't breathe. You're shivering slightly. Try not to. Good girl. Good girlie. Good girl."

The slab is moving. I am coming out of the machine again. "Can I pee now?" I ask desperately.

She laughs and comes over to me and adjusts my blankets gently. "Oh no, sweetie, you have to hang on for a while. We are watching what happens while the dye goes in your area there. So you can't move. We have to keep looking at that exact same spot until it goes away. If you move, we might lose the position and be unable to tell."

"Tell what?" I ask.

"Well a cancer will hold onto the dye, but in a benign area the dye will be picked up by the bloodstream and washed away. So, you see, once the dye goes away from this spot, we will know it is not a cancer."

"Can you make it go away?" I ask in a small voice. She smiles and pats my hand.

Here is the funny thing. I am a physician. I knew that tumors pick up contrast. What I never knew was how long it takes to see whether the stuff is going to wash out or not. Who knew that? They don't teach that in medical school. We always thought that the patients were down there in radiology forever because the nurse's aides who push the guerneys were out in the back of the hospital smoking. Which they were.

In and out of the machine we go. In. Whirr whirr whirr. Out. pat pat pat. In Whirr whirr whirr. Out. Pat pat pat. Whirrr whirr whirr. Pat pat pat. Whirr pat Whirr pat. I lost track of how many times but after a while I start doing my algebra calculations. The dye is clearly not evaporating from that spot yet but my bladder has at least a full quart of liquid in there by now. If 90% of the fluid in the body passes through the circulation in five minutes, might it not be the case that what was going to be picked up has been picked up? How long have I been here?

"How many more times are we going to do this?" I whine, the next time I come out.

She isn't patting me or looking at me this time. "Well." She says. "The protocol only allows three more trips into the machine."

"So the dye is still there?" I ask bleakly.

"Well I'm just the technician," she mumbles, looking embarrassed.

Now I am panicking. A little pee almost comes out, but I forcefully stop it, taking some pride in the strength of my lower abdominal muscles whether or not I am going to die.

Maybe I am going to die, I think, but I am not going to soil myself.

I am entering the machine again. Listening to the whirring, I think to myself that when I no longer hear this noise it means the exercise is over and I am going to die. But, I remind myself, I still have three more tries, so I can't find out during this round that I am going to die. This time when it stops the opera ain't over.

But, but but....I keep thinking, the way I have been thinking ever since my cellphone rang during the party for Charlie Winters' induction into the National Academy of Science and I found out, with my mouth full of salmon crudite and my arm around his mother that my biopsy was an invasive, grade 3, poorly differentiated adenocarcinoma....but I don't feel sick at all!

The whirring stops and my heart is pounding. What if they already know I am a dead duck and they only finish the protocol because of the less than 1% who empty their benign stuff really late? Because they do not have the same kind of obviously hyperactive kidneys that I do.

I was rolled out of the machine again. The technician was there, smiling. "You can get up now," she said.

"But you said three more times. "

"The dye is all gone," she said, releasing my straps and helping me sit up. "Actually, I thought it might be going away last time, but I couldn't be sure and I didn't want to get your hopes up. Anyway, this is definitely not cancer."

"Are you sure?"

"Completely sure." In fact the radiologist was in here looking at the images when you were in the machine and he says he can tell it is a benign hemangioma. You do not have cancer.

"Well actually I do," I reminded her, " In the breast, but now that I know it isn't in the liver I can live with that. Because I might live with that."

"Exactly," she said, handing me my purse and hanging my cellphone around my neck on its lanyard.

Suddenly I remembered about first things first. Or rather I felt it. Urgently. "Where is the bathroom?!!!" I screeched.

She pointed to a corner and I made a dash for it. Within seconds I was half on, half off the toilet, pushing the flimsy door shut with my foot, peeing out a gushing stream in ecstatic (if painful) relief, my purse dangling haphazardly off my arm, as it dawned on me that if I had a decent chance to live, I could do all the things that I had been trying not to remember about for the last few days, go swimming, eat chocolate, buy clothes, even if I would have to try them on without breasts or hair. Hell, I could get implants and wear a wig and maybe even a boyfriend, and....I could...

I had never peed for so long in my life. A stream of toxic waste was continuing to spew violently from my half numb core, and judging from the pressure there was still a long way to go. In my purse I saw the edge of something green and my heart leaped.

While continuing to pee steadily, I dialed Wallaces and, switching to the 24 month payment plan, I added the rose table XJ10034 to my order. They agreed to deliver everything together within 24 hours, just as the pee slowed to a trickle.

After all, I figured, to prepare myself for a terrifying, disfiguring surgery and the nauseating fog of chemo it would help to be able to dine like a queen first.

I believe that we can survive almost any loss, we can lose our breasts, our hair, our grant support, but we will be fine as long as there is something we can point to that we did not lose yet.

As soon as I had my 95% 5 year surival odds back, (it is only 15% if there is cancer in your liver) it was possible to appreciate that I still had my beautiful chandelier. And what you should do when you identify that you have something, is to try to get an even better thing. I ordered the table.

That afternoon I went back to the office because I was hoping results of the kidney biopsy on one of my lupus patients would be ready. The report was right there on my desk, under a pack of strawberry twizzlers. Leslie is extraordinary. I think she reads my mind sometimes. I suspect she may be a witch, but I don't want to scare her by telling her. She thinks witches are old. Can you blame her? Look at me.

It was after 5 PM and no one would have faulted me if I waited to call the patient first thing in the morning, but I stuck a twizzler jauntily in my mouth and phoned her right away. What you should do when you recognize that you have won one, is try to win an even better one.