Wishing on a Blue Star (24 page)

“That’s from the change in pressure, right?”

“Yes, exactly,” Jeff says. “Get ready. I’ve got to get a little bit more.”

Cranky Bat number one says something about taking deep breaths but I ignore her. I know far better how to handle my own pain than she ever will.

“Okay,” I say to Jeff, and start laughing. Some people do that, according to a chiropractor I had once. They laugh in anticipation of getting their neck cracked, and I’m one of those. So I’m trying to hold still, laughing myself silly, and Bam! Another
jolt
, though nowhere near as intense because its no longer a surprise.

The rest of the procedure is uneventful, with Jeff telling me he has to go for the spongy part next, and I’m still chuckling off and on while he grinds and digs. Doesn’t exactly hurt, but I was fascinated by how I could feel the vibrations along my spine. Yes, that stuff really does fascinate me. Call me odd.

They discuss whether or not they got enough to do whatever. I heard something about a slide, so I figured that meant like those old glass microscope slides or whatever the contemporary version was, and at the end, as Bat one and Bat two scurry off with pieces of me, the dark haired one calls out “You can show him that part.”

“Oh, I have been granted a boon! Thank you!” and childish as it was, MY delivery left no doubt of the level of sarcasm.

Patient, considerate Jeff had me turn over after he taped me shut “To put pressure on the bandage.” and I struggled to get turned around. My back was aching and wouldn’t cooperate, but when I finally did get flipped over, Jeff started showing me his tools.

“Wait, wait. Start over.” as I scramble to kick the phone out of audio record mode and shift to video. Bless his heart if he didnt start over, showed me how the auger thing works, and what all he did. Finally getting what I wanted from the start, I chill, and I have no doubt HE breathed a sigh of relief too.

The rest is just noise, but the point of all this remains. The medical system is a juggernaut, feeding itself by feeding on the people it’s supposed to be helping. As I patient, I am required to act a certain way. to be frightened and in need of comfort, or angry and belligerent, or at the very least, cowed and unresponsive. I am not allowed to be curious, inquisitive, and worst of all, cheerful. So very few of the people in that profession can change gears and deal with me. That’s been proven over and over, ad nauseum.

And while I may not be able to stop the juggernaut and make it acknowledge the fact that I am a real live person, I will, to the best of my ability, be a very large bump in the road so when the damn system runs me over, somebody will notice the
jolt
.

Tuesday, February 9, 2010

Showdown at the Oh Well Corral

I learned a new phrase. Or rather, I re-remembered an old one:

Without preamble.

Generally speaking, it mean dispensing with all the usual chatter about forgetting to update, being remiss, etc. Face it folks, if we don’t already know I have the brains of a neutered jelly fish by now, my constant reminders ain’t gonna help. :)

So, without preamble, the bone marrow biopsy test was negative.

As with everything else involved during this fun and frolic called “fighting cancer” I got a grand opportunity for more rough and tumble learning about a little thing I like to call “learned complacency.”

Okay, let’s see a show of hands. How many people read “the bone marrow biopsy test was negative.” and felt a sharp stab of relief? Be honest now, because this will be part of the final exam.

Of the several people I told locally, (friends and family) every single one breathed a sigh of relief. I’m willing to bet everyone reading this blog for a specific reason did too.

Know why? Because we learned practically since birth, either by direct experience, or by interpretation as small children, or by indirect experience as we grew older, that medical tests were either positive or negative, with very few shades of gray.

You either have it or you don’t. The procedure was successful or it wasn’t. (Keep in mind here that I am making a very broad statement for a very specific reason.)

Doc called me today to deliver the results of my marrow biopsy and told me the results were negative. If I hadn’t experienced all that I have thus far, I would have breathed a sigh of relief, just like you did. Guaranteed, because I learned the same way most of you did what a negative results means; by observing others, like parents, friends, and worst of all, watching TV.

In a show like ER for example, tension builds as the problem manifests, dedicated personnel scramble to solve a problem, find a cure, and test for efficacy. The test come back negative (“Your lungs are clean, Mr. Fribblehoff!”) and the end credits roll. (Again, a broad statement.)

What you don’t see is that yes, the test results show no sign of whatever ailed poor Mr. Fribblehoff, but only because the test could detect to a certain point.

Remember the old days of HIV testing? Comprehensive, detailed tests of drawn blood that took weeks of careful and considered examination by several specialists? Now-a-days, a swipe with a cotton swab on the inside of your mouth is all that’s needed, because the tests improved over time, became more sensitive to the disease, and could show more. A million cells rather than the hundred million previously needed to prove or disprove the presence of the disease.

(Dont take that as fact. I have only the barest clue what they search for. Once again, a broad statement.)

Ditto the bone marrow biopsy test. Some poor schmuck gets to glue his or her eyeballs to a microscope all day and look for anomalies in slide after slide. Again, I don’t know what they actively search for, but it can be presumed that cancer cells are readily identifiable, like picking a familiar face out of a crowd of strangers. Certain stains are used to make the ID more accurate. Certain stains that mark certain cells, or characteristics of cells. Shapes are taken into consideration, if I recall correctly, as well as sizes. I read about this way back in August, when all this mess started, and of course I didnt bother to note citations. Idiot me.

Point is, lets say a certain stain, designed to mark a full blown, ready to divide cancer cell, is used. The tech, (his official generic title is a hematopathologist, but we’ll call him tech and respect his dedication regardless) peers through the microscope and sees nothing stained. No familiar face in the crowd. He signs off on the slide, and four days later, Doc tells me the test was negative.

Yay, right?

Nope. I know better. I understand the theory and practice behind these tests because I needed to learn about them. Just enough to be dangerous, an experienced tech might say. Enough so that exasperated, well meaning friends and family might call me a pessimist. (You know who you are. Dont deny it.) :)

What happens if the stain does NOT show a freshly divided cell because it hasnt yet grown certain characteristics the stain would show?

So when Doc delivered the news, I swear I could hear him *hope* that I’d be pleased, but deep down inside he already knew I wouldnt be. Or maybe that was just my imagination. I am paid to be imaginative, after all. :)

“I know that’s not really the news you wanted to hear,” he says.

“No, not really.” I reply, hating myself for disappointing the guy. Seriously.

Now wait... Before you go wondering why I’d want a positive result, let me explain...

I want the transplant. Seriously want it, despite the known risks and the odds of success. In the short term, it’s an automatic grant of disability, according to the woman who (already) made the decision against. (That alone would tell me just how hairy the procedure is, even if I hadn’t researched “autologous transplants.” Gah)

And yes, that grant would solve certain problems that weigh rather heavily on me, but I have a sneaky suspicion the government will have still more of “their rules” to hinder the process as long as possible. Long enough that whatever benefit I might get wont be immediate, or soon enough.

In that context, I probably am a pessimist.

Bless his heart, Doc thought that was why I was disappointed. Earlier, we had discussed... Okay, he listened patiently and I ranted... about the necessity, my getting depressed, my overblown sense of integrity, whatever.

“No Doc. That’s only secondary. The main reason I wanted the test to be positive is because I can’t think of any other way to convince you guys to do the transplant. I flat dont want to wait six months to see if this shit come back, finally start to feel like myself, and then turn around and do this crap all over again.”

Once again, the poor man has to listen to me rant, or ramble. He has the patience of a saint, and I am a self proclaimed ass for abusing him.

There are several facts I considered before coming to terms with the transplant. Not the least of which are these:

1.
      
There is a high rate of re-occurrence for my type of lymphoma. On the order of 65 to 70%

2.
      
My body is breaking down as a result of the chemotherapy. meaning I dont recover to 100% between cycles, and if you will recall, that was one of the deciding factors in not doing the last two cycles.

3.
      
A transplant is the last step, the last option available, to combat the disease.

4.
      
I don’t want to spend the last portion of my life (or a significant portion of that portion) feeling like crap.

5.
      
I am tired of fighting a system I no longer believe in.

6.
      
It’s been a month since my last chemo and I feel “worse.”

7.
      
My flavor of lymphoma is rare enough that there is very little proven fact about how to treat it. By and large, it’s being handled by averages, meaning “This is what we
usually
do for T-cell lymphoma.”

8.
      
I learned ages ago that averages dont often apply to me, meaning I cant help wonder if something is getting missed simply because “it’s not
usually
done.” Call that ‘clutching at straws’ if you want, but remember the last scan showed lumps of some kind present, although significantly reduced, and with the possibility of being only scar tissue.

9.
      
There are several physical manifestations that tell me something is still wrong. (and of course, I may well only be seeing the worst of a situation that might otherwise resolve itself later)

10.
      
The way I see it, a transplant is analogous to wiping the hard drive, reinstalling the OS, and starting over.

11.
      
Summer is coming, and if it is to be my last, I want to be out in it. Not watching it pass by my window.

So, the way I see it, I have basically two options. I can take the defensive approach and accept the negative test results, start feeling better and better as the effects of chemo finally wear off (irrespective of #6 above) and just about the time I am me again, find out the shit came back.

Or...

I can go on the offensive, do the transplant while I am still physically strong enough to survive it, take the last shot, and accept whatever comes after. I will feel better, eventually. For how long depends on the odds.

I decided on the latter. Like playing Blackjack in Vegas, I want to play one more card.

The problem is, I’m in a casino where the
House
decides if I can have that last card or not.

Doc already said he talked with the specialists (prior to the CAT scan and biopsy) and they recommended not doing the transplant.
Generally
speaking, there was no significant proof it helped or harmed the odds of success.

Okay... That’s foremost in my mind while I ramble on, telling him why I wanted positive results. I figured the continued presence of cancer was the only way I could get the House to give me my last card.

Once again, I didn’t count the ace up my sleeve; Doc.

Stupid, stupid, stupid me.

“Well, I’ve got about twenty minutes before my next patient. How about if I give the specialists a call and present them with your case, and the results of the recent tests?”

ohshitohshitohshitohshitohshitohshithopehopehopehopehope

“Sure. That’d work.”

(That is obviously a heavily paraphrased, oversimplified account of the conversation. In point of fact, Doc did what he always did, listened to me rant, managed to find some kind of merit amidst the effluvium of my babbling, and acted on it. Gods, I love this guy.)

A few hours later his assistant calls me back, and (without preamble) says she is calling on Doc’s behalf, that the specialists will “see the patient” and that she’s started the formidable process of filling out paperwork, faxing referrals, and scheduling the requisite PET/CT scan. Trina and I barely get along, and we probably wont see any improvement on that score, but I do have faith in her ability to navigate the unbelievably complex system, and I start getting excited. Bonking my head on the ceiling, as it were.