The Trial – But Not the One by Kafka

~ Lee Swanson ~ 18 Comments

Well, this is easy. Big deal clinical trial. Experimental drug. Forty pages of warnings and explanations, initialed and signed. Two days in the hospital. Blood tests every two hours. Vital signs, doctors going in and out.

Can’t be too careful. Put me in the hospital because there is less chance of side effects if you don’t get a good night’s sleep. Where was sleep deprivation in the consent form?

Checked in the night before and immediately got an I-V strapped to my forearm. Seven different kinds of tape, ranging from “welded to hair” to “stitched on” with a final layer of “implanted.” But that wouldn’t be a problem for two and a half days. It was the saline solution they pumped into me by the kegful that was an immediate problem. Just in case a nurse forgot to come by and wake me the moment I closed my eyes, the salt water filling my bladder would do the same thing.

The blood draws started sometime before dawn. Sometime way before dawn. At least it was another excuse for being awake.

The hospital is very pleasant, if you’re passing by. Huge atrium, wood floors, marble, fake palm trees two stories high, skylights washing the hallways in natural light.

Then you step into the room. Bathed in beige, fluorescent light washing over the crisp white sheets and paper thin blankets, with a curtain running down the middle to shield me from the angry old man in the other bed – the one by the window. Why is he angry, he’s got the window? On my side, there’s almost room for a chair at the foot of the bed.

Fortunately I wasn’t sick and as long as I was in the neighborhood in time for the blood draws no one really cared where I was the rest of the time. So Cheryl, my I-V pole and I walked the halls, sat in the pleasant parts and read.

In the morning, the study director came with The Pill. This is what I had signed up for. Small dose to begin with. Swallowed it and waited. Nothing happened. An hour, two hours, three. Nothing. All day, all night.

The next day, same thing.

The lights came on at 5:30 when the woman from the lab walked in with a cart and cheerily announced she was here to get blood. Apparently blood is at its optimum best when it’s still asleep. Another woman with another cart went to the angry old man and woke him up. That didn’t go well.

“What time is it?” “5:30.” “You’re not supposed to be here before 7:30.” “No, I have to get it now before the doctor comes.” “Well, you can’t have it.”

So she left. He’s my hero. More remarkable, she didn’t come back. Not that I blame her; who wants to deal with that? And maybe just as interesting, later in the morning he didn’t remember it at all. I’m not sure, but that may have something to do with why he was there in the first place. That, and that he’s angry. And old.

Anyway, after the wakeup call I only had to wait three hours for breakfast. So I got up, showered, got dressed and left. I would have gotten a lot farther if it hadn’t been for my friendly I-V pole. They stare at you at Starbucks if you walk in with one of those. So I just roamed the hall.

Then after breakfast they came with The Pill again. The study director and two nurses crowded in next to my bed to watch me swallow it. This one was twice as big as the first day’s. When I didn’t turn green or orange and projectile vomit, they looked at each other a little disappointed, shrugged and left. Until the next blood test. And the one after that.

And so it went. The third day they gave me The Pill, ripped the seven layers of tape from my arm and tossed me out.

I go back to the clinic almost every day, sometimes twice a day for a blood test.

It’s been a week now, the dosage has gone from 20 to 100 on its way to 400 and I don’t have as much as a hangnail. So much for side effects.

And the trial goes on, one pill a day for several more months, maybe as long as two years. Truth is, it’s not as though nothing has happened. After a week, my white blood cell count is normal.

First time in three years.

 

Cancer: The Video Game

~ Lee Swanson ~ 10 Comments

Science has always been a subject to be avoided in my life. I took just barely enough science credits in college to meet the minimum requirements, and put in the minimum effort to get through them. And that’s the last thought I gave the subject.

And then I got cancer.

Not that studying the subject on the Internet sheds much light. Most of the research is filed as papers aptly called “abstracts” and that would be fine if it weren’t so real and decidedly non-abstract to me.

And then there’s the problem that none of the abstracts or other material is written in English. Some of it is literally not written in English and the rest of it is not written in a syntax any reasonably intelligent person can understand.

So this week I’m starting a clinical trial with only the most rudimentary understanding of what the pill is that I will be taking and what good it can be expected to do. On the other hand, the 40 page single spaced consent form is pretty good at spelling out in plain English what bad things the pill might do. Fever, sweats, chills, flu-like symptoms, cough, shortness of breath, feeling very tired, vomiting, nausea, diarrhea, irregular heart beat, muscle aches, skin rashes, burning when urinating. Dogs that have taken the drug have seen their hair turn gray and their sperm count go down. Some mice have had hearing loss. And then the big one: TLS, Tumor Lysis Syndrome. This more or less means that the pill does such a good job of killing cancer cells and shrinking tumors that the kidneys can’t handle it all, making uric acid and potassium levels go up so the kidneys and heart stop working. Not to worry, they promise to watch out for signs of that.

The good news is pretty much spelled out in one sentence: Laboratory and animal studies and early clinical data have shown that the study drug kills cancer cells and causes tumors to shrink.  What more do you need to know?

But here’s what I’ve figured out more on less on my own. The pill is called ABT-199 and it apparently attacks the alphabet. They are giving it to me because I have CLL, and one of the things that keeps CLL cells alive longer than your average white cell is a protein called Bcl-2. (I thought protein came from hamburger and eggs,pacman but apparently there’s a little more to it than that). Bcl-2 seems to only attach itself to CLL cells. So, they have pretty good evidence (I hope) that ABT-199 will run around in my veins playing Pac-Man against Bcl-2 and eating it up.  That knocks the CLL cells out of the game. If it works well enough, game over, I win. If not, well, buy more tokens and play something else.

The game starts Wednesday morning. I’ll be in the hospital for two days while they give me the first two doses and then stand back to see what happens. But don’t hold your breath. It’s about a two year study. The good news, when it comes, will take a while.

(Seemingly unnecessary disclaimer: No one should base any decision on, or give any credence whatsoever to the information and opinions expressed in this column.  )

 

Thank You

~ Lee Swanson ~ 5 Comments

Today, I want to tell you about something that bothers me. I want you to know about it because maybe it bothers you too. And if it doesn’t yet, it will after you read this.

It’s something people do often when they accept an award or honor. When Steve Thomma gave his “farewell” address as president of the White House Correspondents Association he must have done it at least a dozen times. He had a bunch of people to thank and as he mentioned each one of them he said “I want to thank” the board, I want to thank the committee, I want to thank my editors, I want to thank my co-workers, I want to thank the waiters, I want to thank the caterer, I want to thank my family.” Maybe he did that so that Joel McHale wouldn’t be the worst speaker of the evening, but I suspect it was just that he didn’t know any better.

Toni Atkins was sworn in as Speaker of the California Assembly today and she did it too. “I want to thank my spouse, I want to thank the outgoing speaker, I want to thank the governor, I want to thank .. I want to thank.. I want to thank….”

Halfway through the speech I’m screaming at the television. You’re standing at the podium, the microphone is on, everyone in the room is looking at you, just go ahead and thank these people if that’s what you want to do.

I want to know why people do this. If there were degrees I could understand it: I want to thank these people, I need to thank those people, I’m expected to thank that guy, I have to thank her or she’ll write me out of her will, I’m going to thank him because it will mystify everyone. But they don’t do that. It’s always “I want to thank…” The speech would take up half the time if they would just say thank you. Or for that matter, call them later and thank them, and spend the time at the podium saying something meaningful.

That’s what ought to be done and it would make a big impression. So remember that if you ever have to give a speech at an award show. Say something meaningful. People will go away thinking you’re very bright. It’s good advice.

You can thank me later.

-0-

I read something funny today. Funny odd, not funny hilarious. The football coach at the University of Minnesota is doing a road trip around the state, ostensibly to thank the people who support the team, but more than likely to try to drum up ticket sales.

Anyway, in making the announcement, the intern in the sports information office who wrote the release said the coach would be traveling across “Greater Minnesota”. I remember, when I lived there forty-some years ago, that Minnesotans would talk about the Greater Metropolitan area, which meant not just Minneapolis and St. Paul, but the entire Seven County Mosquito Control District.

But Greater Minnesota?

I thought maybe that meant the coach would be going to places not only in Minnesota but also a few in Wisconsin, Iowa and North and South Dakota because how else could it be Greater Minnesota. (Never mind that Minnesotans believe Wisconsin, Iowa and the Dakotas constitute Lesser Minnesota; places that just wish they were Minnesota). But no, all the stops are in Minnesota; places like Park Rapids, Owatonna, St. Cloud, New Ulm, Red Wing and Coleraine. The garden spots.

Someone needs to have a little talk with the intern in the sports information office.

 

Time for a Decision

~ Lee Swanson ~ 11 Comments

I got a call a while back asking if I could be on a radio show to talk about living with a terminal disease. Fortunately for the radio listening public, I had another obligation and couldn’t make it.

But it’s made me think, again, about leukemia. Not that I don’t think about it every day in one way or another. But now, finally, I’ve decided I spend too much of my living moments thinking about dying. Mortality does take on a different dimension when you really realize it’s not all it’s cracked up to be. But it’s not worth fretting over.

Everyone knows, I think, that we are not getting out alive, but any time the subject comes up someone is bound to say “well who knows, I could get hit by a bus walking across the street to lunch.” Like one day their bus is going to come in.

Ever notice that it’s always a bus? No one ever speculates about getting hit by a car, perhaps because that’s more probable. And no one really expects to get hit by a bus on their way to lunch, no matter what they say. Odds are, they’re right, they’ll live to order lunch. Odds are better that a car might take them out, so let’s not talk about that.

Me, though. I look both ways and cross the street anyway, quickly. I think when you’re really resigned to it, you don’t look first. You just go to lunch. And I’ve been doing that for awhile. Figuring that it was just a matter of time before I didn’t make it to lunch. I might have been right, but now, I’ve quit planning for an early retirement.

I’ve told my doctor and his study director that I want to sign up for a clinical trial. This has been looming now for some long time. Probably not as long as it seems. But the last several appointments have all ended with the admonition to come back in three months and talk about a treatment plan. So this time, when we went for my appointment we really thought he would want to talk about a treatment plan. Instead, he hedged and said there was no rush but that things were certainly moving in that direction and we would have to think about treatment sooner rather than later.

We had talked about it and had a pretty good idea of what we wanted to do. Is there any reason not to wait? Will it be any easier or more effective if I’m older and sick? If anything, it seems like the right time for it now. My symptoms are negligible and I’m feeling good so it seems reasonable to think I can withstand whatever they throw at me.

It’s odd isn’t it, with cancer. For so many people, the cure is worse than the disease. Until it isn’t, of course. And for me, it’s not a cure. At least not as far as they know. No one has been cured yet, but that carrot keeps dangling out on the end of the needle that maybe this treatment, maybe this pill, maybe this combination of god-awful shit will be the one that actually is the silver bullet. So let’s give it a whirl.

It’s an experimental drug, of course, or it wouldn’t be a clinical trial. (We never called them clinical trials when we experimented with drugs in college, but those were simpler times). And just for good measure they’ve decided to combine it with an approved drug to see what the two of them will do together. Each of them seems to work pretty well by itself so far, so maybe if we mix them up with just a pinch of eye of newt we’ll come up with something really wickedly good.

Now, here’s the thing. If you look it up on Google, you’ll find that three people died in the early trials of this experimental drug. Seems it worked so well, so many leukemia cells were killed, lymph nodes tumors shrunk so much that it overwhelmed their systems. But they figured out how to deal with that and have solved it. So let’s not talk about that either.

For most people, and everyone since they adjusted the dosage, it’s worked and many of them have no evidence of disease at all. It’s the very definition of the adage that what doesn’t kill you makes you stronger. And since I’m pretty healthy for a sick guy, I ought to come out on top, right? Right?

It’s going to be a month or so before I start. And it’s not a sure thing that I’ll be accepted. There will be another bone marrow biopsy and a CT scan and a medical history and some other tests. I’m hoping the entrance exam has an essay question. I hate multiple choice. If I score in the upper percentiles in all those, I get to take a pill. Every day for two years or so. And once a month, for six months, I go in for an infusion for a day. Easy. Except for the side effects, most of which have been observed in dogs and mice so far. So if I start scratching behind my ear you’ll know I’m in treatment and you may not want to suggest that we go to lunch.

Easy Is Not Golf

~ Lee Swanson ~ 5 Comments

I have spent much of my adult life and all of my expendable income drinking scotch, and playing, practicing and thinking about golf. Lessons, books, tapes and DVDs, practice and more practice, more lessons and more books. The game dominates most of my waking hours, which accounts for the sorry state of my career and bank account.

Golf is the only thing I’ve tried that I stayed with though I have absolutely no aptitude for it.

I gave up on basketball after one season in junior high school, despite the varsity coach offering to spend the summer working with me so I could go out for the team. It was an offer that had a great deal more to do with my being the tallest kid in my small school than it did with my burgeoning athletic potential, which has yet to burgeon.

At college, I decided I would learn to play chess and turned to a kid in the dorm who seemed to play a lot. Big mistake. He was a total math nerd. Before him, geek was a term reserved for carnival performers who bit the heads off live chickens. I understood the direction the pieces moved and what the object was, more or less. So we sat down to play. And the first words out of his mouth were “think of it as a math problem but start with the solution and work backwards.” I stared at him silently for a full minute and then pushed my chair back and said, “Thanks, but I got to go.” Have not tried to play chess since.

My mother was a very good bridge player. She was in a couple of bridge clubs in our town and was on the list to substitute for several other clubs. Not that it’s a big deal to be in demand to play bridge in a small town, but nonetheless she was by all accounts really good at the game. So I asked her to teach me. I knew how to count the value of the cards so when we started I thought I was ready. She looked over my shoulder at my cards and said “bid two clubs.” “Why?” I asked. “Because that’s what you bid with this hand.” “But, I’ll never have this hand again, what makes it two clubs?” “It just is.”

My brother once suggested we go to the park near his house and play tennis. Or at least hit tennis balls around, since neither one of us actually played tennis. It seemed like a good idea and might have been fun had it not been for the two eight year olds in the court next to us who had been playing since birth.

Next.

But golf. I have no ability at golf either. Never have. But I still play. I try, I learn, I re-learn, I practice, I play.  I buy the weighted clubs, the straps, the special gloves, the gadgets that promise to revolutionize my game. And I suck.

I owe most of my stick-to-itiveness in the game to my best friend in high school who started playing golf with me. We knew essentially nothing, but we went to a course and started. No lessons, no practice. How hard could it be? The ball doesn’t move; it just sits there waiting to be sent soaring through the air and land in the short grass hundreds of yards straight ahead.

We were just smart enough to go to another town because someone said it was a good place to start. As golf courses go, this was a goat path. We were embarrassingly bad, but we didn’t know it, and thankfully we didn’t see any eight year old prodigies or anyone we knew at all for that matter. It was just us. We laughed and we tried and we laughed more. People who were on the course behind us didn’t see the humor in it, I’m sure, but we had a great time.

And we kept playing all that summer. We absolutely sucked, but I was sucked in. For the next forty-five years I’ve tried to improve. Occasional flashes of half-decent followed by years of frustration. I’ve thrown my share of clubs and turned the air blue more than once, maybe more often than not. Like everything else at which I’ve tried and failed, I quit the game regularly, sometimes for years at a time. But with golf, I come back. Another lesson, a magazine article, a television tip, a new driver with the technology to make it impossible to fail, and I think it will be different this time.

But of course it isn’t.

It happened again today. I saw an infomercial. Professionals and analysts have found the components to the perfect golf swing.

One of the very average looking people giving a testimonial promises “if I can do it, anyone can.” It’s simple, it’s possible, and it’s within reach. Any run-of-the-mill weekend golfer can learn the method and revolutionize their game. It’s easy. The keys that all champion golfers have in common and I can do it. They promise. It’s easy. And it can be mine. This is it. This is not just it, this is IT.

I was about to write the check when the announcer said it’s a five DVD set.

Five DVDs.

Five.

To get the simple keys to the game.

Easy.

Easy is changing a light bulb. Easy is putting on slippers. Easy is not five DVDs of careful instruction. Easy is not golf.

But maybe if I bought that new driver…

Here’s to the Sort of Winners

~ Lee Swanson ~ 2 Comments

Watching a rerun of Saturday Night Live, I was struck by something odd. First you have to understand that here on the West coast every Saturday Night Live is a rerun—we used to call it Saturday Night Taped—but this one just happened to be on at two in the afternoon. And the odd thing was not Ben Affleck’s Jimmy Stewart’s impression.

It was a Kia commercial that touted the Sportage as the “highest ranked sub-compact CUV in initial quality in a tie, according to J. D. Powers.” I thought it was an SNL parody but it was real. It just should have been a parody.

A CUV, for the uninitiated, is a “crossover utility vehicle,” which makes it a little sports utility vehicle. And a sub-compact crossover utility vehicle is a microscopic sports utility vehicle, suitable only for small sports like marbles, darts and fantasy football.  (Which, coincidentally, are all on the list to be included in the 2020 Olympics).

There aren’t a lot of sub-compact CUVs but according to one headline “Volkswagen Plans to Enter the Sub-Compact CUV Market in a Big Way.” Seems contradictory.

The Kia Sportage is proud to be the “higest ranked… in initial quality in a tie.”  I’ve never seen a car wear a tie, but it is apparently an option available on sub-compact CUVs. Windsor, four-in-hand, bolo or bow now available.

And “initial quality?” They ask the owners what they think of the car after they’ve had it for ninety days. I don’t know about you, but when I buy a new car I figure the first three months ought to be pretty easy driving. So initial quality means it was in one piece when it was driven off the lot, and most of the wheels went around. And the Kia Sportage is tied in that category. With a Buick. “The Kia, just as good as a Buick, for three months.”

Along with wondering why they advertise that, I wonder why J.D. Powers even asks.

“What do you think so far?”

“Nothing bad has happened yet.”

Reminds me of the old joke about the guy who fell from a twenty story building and lived to tell about it.  He told the people on the nineteenth floor, the people on the eighteenth floor, the people on the seventeenth floor…

And remember, this doesn’t say it’s the best sub-compact CUV.  It’s “highest ranked sub-compact CUV in initial quality in a tie, according to J. D. Powers.” Don’t look for the bumper sticker any time soon.

Third place, since you’re dying to know, went to the Nissan Juke. The Juke. I thought that was a seedy joint with cheap liquor and a back room poker game. Someone should have told Nissan. With a better name it could have been a three-way tie.

Colorful Words

~ Lee Swanson ~ 5 Comments

Driving home from pre-school with my three-year old – I’M ALMOST FOUR – almost four-year old granddaughter, we engaged in an extensive discussion of colors and fruit.

ME:   What’s your favorite color?

SHE:  I like all colors. Blue, green, red, yellow,

ME:   Orange?

SHE:  Orange

ME:   What color are oranges?

SHE:  ORANGE

ME:   What color are bananas?

SHE:  Yellow

ME:   Why are they called bananas; shouldn’t they be called yellows?

SHE:  Because they are bananas

ME:   But if oranges are orange wouldn’t yellow be a good name for bananas?

SHE:  Yellow is a color

ME:   What color are blueberries

SHE:  Blue

ME:   My point exactly. Why aren’t there redberries?

SHE:  Because they are strawberries

ME:   I was thinking raspberry, but I’ll give you that

SHE:  Did you bring me a snack?

ME:   Oh look, an airplane

Why are things called what they are called? And don’t get all etymological on me. I know it generally has something to with either a guy known as The Greek or a guy known as The Latin; as in, “it’s from The Latin for victory.”

(That in itself makes no sense. The Latin mispronounced vici as “wiki” as in wiki-pedia, from The Greek, and neither has anything to do with inaccurate information passed off as fact).

But if we did call bananas “yellows” we would have banana available to call something else – like the Name Game. Banana bo bana.. fe, fi, mo mana,…

I’ll admit to a somewhat obsessive interest in words and the peculiar way we use them.

I recently made some comment about a new drug my doctor is likely to have me try, and posited that it is called Ibrutinib because all the good drug names are taken.

Well, turns out there is some rhyme or reason for how drugs are named and most of it has to do with The Latin but it’s also true that there have never been good names for drugs.

We’re accustomed to it now, but imagine what it must have been like the very first time a doctor told a patient “we’re going to give you an aspirin.”

“A WHAT?”

Pretend you have never heard the word before; what would you be thinking? Say it out loud.

“I’ve got a headache. How is giving me something purrin’ in my ass going to help.”

And that is how the “second opinion” came to be.

Calling it “aspirin” may not have had anything to do with the development of Bufferin, but it certainly figured into naming it.

Words are interesting things. We don’t think about them often enough. My granddaughter seems to have it figured out. She’s a three almost four year-old and isn’t encumbered by these issues the way I am.

I’m old. So old I don’t buy green yellows, ah, bananas.

Hmmm.  Maybe she’s on to something.

Trick or Treatment

~ Lee Swanson ~ 9 Comments

Maybe if I write this down I can get it off my mind for a while.

One of the peculiar things about CLL – which is what people call Chronic Lymphocytic Leukemia if they can’t spell lymphocytic – is that you can be in Stage 4 and not get all exercised about the need to start treatment.

Because it’s not a curable disease the treatment just reduces the symptoms. And since I don’t have many symptoms, there’s no rush. After looking at the bone marrow biopsy, my doctor declared I’m fairly healthy for a guy with stage four cancer.

That’s a bit like saying Russell Crowe sings okay for an actor. Except he doesn’t. Even for an actor. So just forget this whole paragraph. I just wanted to throw it in.

We walked into my last appointment expecting to hear that I had to start treatment right away and then trying to choose among the various tried and true treatments and the clinical trial protocols that are out there. I don’t mind saying I was pretty depressed about it. It had been five years since we last went through this. And even though it wasn’t hard to do and I had no evil side effects and didn’t even lose the hair in my ears, I was not looking forward to doing it again. Who wants to hang out every few days with folks in recliner chairs, wrapped in blankets and tubes in their arms?  No one wants to be reminded that they have an incurable disease. Not that I need any reminding. I get up every day and look at the fat guy in the mirror and tell him he has cancer.

And then my doctor said it. He didn’t think we had to take an aggressive stance. My marrow is doing okay, as marrow goes, and we can wait awhile. We walked out feeling pretty good.  Relieved. Until the second thoughts started setting in. Maybe I should be treating this stuff. Maybe I shouldn’t wait. Maybe it will be better to get started and get it over with. After all it’s stage four.

So there we are. There’s no reason to treat it right now. But there’s no reason not to.

I did what you would do in this situation. Made a list.

Reason to Wait Reason Not to Wait
He said so, and he’s one of the world’s leading experts in this stuff, and what do I know. Stage four.
Maybe if I’m a good boy my platelet count will go up a bit and I’ll be better able to tolerate it when I do go into treatment. That’s stupid. Try wishing upon a star too. 
There are some new drugs and new trials coming around and maybe they will be the magic bullet See both reasons above.
I don’t wanna. I don’t wanna.

And that’s where I’m at.  Or, so as not to end a sentence in a preposition, that’s where at I am.

First, I’ve got great faith in my doctor. He is the top of the line in CLL treatment and research. Tell another CLL patient anywhere in the world that you see Tom Kipps and they will ask if they can just stand in your presence for a while and breathe the same air.

And it’s true there is some stuff going on right now that seems exciting, if this is the sort of thing that excites you. Not that it’s a cure, but that it might put off another round of treatment for a fairly long time.

It’s not necessarily fun stuff. A drug that has finished clinical trial and has been flagged by the FDA for fast-track approval should be available early next year. It’s called Ibrutinib, apparently because all the decent names for drugs were already taken.

So that’s a possibility.  It will be a legal drug and as Nancy Reagan taught us, legal drugs are so much better than those naughty illegal drugs.

(Stock tip: Google Ibrutinib and most of the first page of results is about the money the company will make. So that should make me feel good about it.  I mean, has Jim Cramer ever been wrong?)

It does have some side effects and it’s brand new – you might even say it’s newer than brand new – so who knows what it means in the long-term or how long the long-term will be.

Then there’s another drug that my doctor is high on – figuratively speaking. Maybe I should say “he’s enthused about”. It’s called ABT-199, further proving that all the good drug names have been taken. It is doing really, really well in trials, except for the handful of patients who died. I guess it is the real life example of the adage that “what doesn’t kill you makes you stronger.”

They’re pretty sure they’ve got that part under control, because dying is not really the goal and besides, it is really bad PR to have patients die on you.

So that’s the long version. The next appointment is in January and I’ll be ready for treatment then, whether he is or not. It’s just too much psychic energy to have to think about it all the time.

Step One, All Over Again

~ Lee Swanson ~ 5 Comments

I would say it started all over again this week, but the truth is it never ended. This was just the next step.

My appointment was at 11, vital signs, consent forms and a lot of waiting. Then a little exam room, the familiar upholstered table with a paper sheet.  Lie on my stomach and wait some more.  A lot of idle chatter about the weather and then she jams a sharpened metal drinking straw into my hipbone.  Poke in a needle and draw out some fluid, and then some kind of gizmo that reaches in and snips off some bone marrow. They tell me it’s supposed to be painful. And this time it fulfilled that promise.

Then a band aid and I walk out to the car and drive home.

I’ve had five or six bone marrow biopsies since I was diagnosed with chronic lymphocytic leukemia six years ago. You would think by now they could just go in the same hole, but I guess it heals shut.  Usually my doctor orders a biopsy because he “wants to see what’s going on in the marrow,” whatever that means. This one is a little different. This is a precursor to starting treatment.

If you’ve been reading this blog for the last five years or so, you are a) my wife, or b) tired of hearing the whole story all over again. And there’s a lot of that going around. I’m tired of it too.

I’m in stage four now.

So the next step will be to get the results and then talk about the options. We did this five years ago and he recommended a trial of a chemo combination. It kicked the leukemia back but also left me without a lot of good white cells or platelets. And they never have really come back to normal.

And finally he’ll say he’s especially partial to this clinical trial or that. Because the truth is I’m part patient and part subject and while I’m pretty sure he is choosing the thing that’s best for me, there’s a part of me that thinks he just wants to see what will happen with the newest concoction.

That’s when they drag out the paperwork. There’s a chance of complications ranging from hangnails to death. And since it’s a clinical trial I have to agree to come by the clinic once a week for a blood test.

My preference is to put it off until the first of the year. No one wants to hang an intravenous bag on their Christmas tree. I don’t know what it will be and I don’t know how. But I do know why. Because my doctor says I should. I feel fine, and always have. But somewhere around 40 percent of the white cells running through my veins are leukemia cells. And nobody wants that.