Wishing on a Blue Star (26 page)

I also found out the CT part of the name is a plain old, less detailed, CAT scan. It’s designed to be a reference image so the results of the PET part can be correlated, etc. The picture it produces is called a ‘scout image’. Keep that in mind for later. :)

That morning, I woke up seriously pissed. I havent the least idea why. No drugs in particular to produce mood swings, no pissy schedulers or or government buggery to drag me into the pit. Whatever the reason, it wasnt a good day to be around me. Sigh.

At some point in the way to my appointment, my inside voice and my outside voice exchanged places. Just about the time I snarled, out loud, about sunshine making people “come crawling out of the f*cking woodwork.” and the lemmings parted like the Red Sea, my inside voice started worrying about the techs who were slated to perform the scan.

I’d confirmed my appointment with Jon. Something about his cheerful manner and candid conversational approach had me grinning a few days prior when there really wasnt any cheer in the day. I really didn’t want to rain on this nice guy’s parade, but damn, that newly liberated voice was vociferous. I was goofing with my phone when he called my name, and when he asked how I was doing, I told him I woke up cranky and showed him the little marquee app that had been playing with. The words scrolling by were “Back off f***stick. I’m in a mood.”

Jon burst out laughing, and of course I had to at least grin. The outside voice and the inside switched places again, and I met Erin. Turns out she’d be doing all the tech work, and she started with the usual litany of requisite nonsense. However, she gets full credit for turning the whole day around because instead of spouting some dribble when I asked her what that thing was on her finger (It looked like a thick ring) she asked me a question instead. “It’s another radiation badge. Do you know why I have one on my hand?”

Bonk.

One simple question, asked in a conversational rather than patronizing tone, and the entire day flipped like a coin tossed into the air and landing heads up. (The answer is because while they wear lead shields around their torso, their hands are more likely to absorb radiation because they are always exposed, reaching for the vials, the instrumentation, and us.)

From that point, it was like a Disneyland ride. Much laughter on both sides, no grumping because I asked them to strap my arms so they didnt fall off the table (pretty sleepy, me) and when I halted the set-up to ask Jon to give me a minute so I could fluff before he took the scout image, he blanked for a second, got the joke, and then burst out laughing. Poor Erin blushed right down to her toes.

When the first scan, the scout image, was complete and I’m sticking out the back of the machine like a little kid sticking his tongue out, Jon pops up behind my head and tells me the fluffing worked; “that everything looked good.”

My turn to laugh out loud, and it was totally heartfelt.

Dozens of people have peeked under my sheets, have seen the best and worst of me and my moods, and there will no doubt be dozens more before all this nonsense is done, but I guarantee you no one has made the experience more genuinely
enjoyable
than Erin and Jon.

Thanks guys. You rock out loud!

Muaah!

Patric

Friday, March 5, 2010

Once more, with feeling!

Just a short update because deadlines loom, and I’m still chemically stupid. :) (Meaning it takes longer to meet those deadlines.)

Met with the transplant guy, and his “posse.” Meh. He sure as hell ain’t Doc!

Whatever.

End result is that he requested another biopsy of my foot which makes perfect sense since the original was the clue Doc needed to make/confirm his original diagnosis.

If it comes back negative, then we proceed with the transplant, insurance willing.

If it comes back positive, then the transplant guy want to recommend a treatment alternative that I’ll need to give very careful thought, because even if it works (and of course no guarantees) it can only minimize the cancer at best, and like chemo, it’ll be a fine line between whatever side effects it presents and the side effects of the cancer itself.

Yadda.

At the end of everything, it’s all just noise anyway. :)

(See why I gave this blog that title? And that was LONG before I even considered cancer as a possibility in my future. Laugh)

Biopsy is scheduled for March 9th, with results likely posted by the 15th.

Cheers!

Patric

Tuesday, March 9, 2010

Hurry Up and Wait

I had the second biopsy on my foot this morning. Rather a bit of confusion as to why I was there, though. Yes, I’m a new patient, but that does not mean I want a complete skin exam to cloud the issue.

Mutter.

There are definite disadvantages to treating everybody on the average scale.

Mutter some more.

After we got it sorted as to WHY I was there, ( a miscommunication caused by one specialist not using another specialists terminology, apparently)

I now have a hole in my foot the size of Cleveland, and four stitches to close it up. Laugh. I think that’s the first time I’ve ever been stitched on the *outside*. :)

Give the new guy credit though; he had the presence of mind to anticipate what the pathologist would want, and asked for it ahead of time so I could call and make arrangements.

(Take note here that were it not for my habit of getting copies of my records, ALL records, there would have been that much more of a delay waiting for me to sign forms. Having asked earlier, the release forms were already in place. Woo hoo!)

Now we wait for the results, and if Doc is right, they’ll be negative. If so, then we can start proceedings for the transplant.

If its approved, if insurance pays for it, and if I recover quick enough, I might actually have a wee bit of summer to play in this year.

The prospect of sunshine, and being on the other side of all this mess has me so excited I literally can’t sit still.

Fingers crossed!

Patric

Thursday, March 18, 2010

Hope has shattered...

... against the shore of indifference.

Catchy title, and yet in no way can it be considered inclusive of all the irritation and frustration I feel.

I got a call from the dermatology doctor who collected the second biopsy from my foot.

(Before I say anything more, let it be noted I am perfectly aware of the fact that I am already jaded, and somewhat reactionary regarding (most) doctors, and the medical industry.)

Seems the hematopathology department is still working on testing the sample, at least according to this guy:

“We’re still testing the sample and we need to stain for additional markers.”

Based on our initial meeting, where I got the distinct impression he had no idea why I was there, my first thought was “Don’t cloud the issue!” especially in light of his subsequent comments.

“Right now, we don’t find any obvious lymphoma, but we still want to make a comparison. I just got the slides from the previous test yesterday.”

WHAT?

I called and arranged for those slides to be delivered more than a week ago, and they only had to travel 60 miles. (Okay, deep breath, Patric. Maybe they got delayed at the origin point. Call and check before you start shouting the house down.)

Good advice, and I listened to myself for a change. Instead of pouncing on him for such a delay, I asked if the preliminary results had been given to the transplant specialist, citing his actual name.

“Who?”

“The guy who ordered the biopsy in the first place.”

“Oh, well I’m sure he’ll get it.”

“Not if you don’t tell him.”

Given my initial impression of the transplant guy, it’s not particularly real to me that I’m high enough in his conscious awareness for him to even check.

This is a world class *teaching* hospital we’re dealing with, and of the two doctors I’ve seen extant, both have student underlings flitting around. I’m making the assumption the almighty doctors rely on the peons to handle the day to day drudgery, like dealing with patients. But I could be wrong. Like I said, reactionary, me.

So, fine. The man tells me to be patient. Several times, in fact, and I’m thinking, “Geez, I only called once, a couple days ago.” Then he tells me he’ll be in touch.

Translation: I’ll get to you in my time and timing.

Fine. I recognize there are far too many other patients to be accounted for in a single day so I bite my tongue, but I cant help think that if I were some rich, wrinkled old lady wanting a Botox injection, they’d pay far more attention. (Remember I said “jaded,” too.) :)

Well... As usual, I’m not content to sit on my hands. I called the original biopsy clinic and left a message to call me back.

Then I sent an email to Doc. He logged into the system, found the partial results, and paraphrased the findings to that point. Seems there are indications of another type of cancer in the sample.

Aha! I knew that old fart Derm guy was waffling around something! And yes, THAT knowledge has far more of an adverse impact on me than the news of a possible other cancer. Call me weird.

Doc mentioned what they were leaning toward as a diagnosis, which I wont repeat here because the evidence is so superficial at this point. He did slip just a wee bit back into “doctor mode” and called the additional tests “complicated” and “very sophisticated.” Buzz words all the “information for patients” pamphlets and such use to avoid explanations, but he gets to slide because he clarified parenthetically.

I’ll say it again. I adore that guy!

If I were a cat, I’d have used up my nine lives in the pursuit of curiosity ages ago, but I’m not a cat, and I’ve got a little time left, regardless. So naturally I dug around to see what Doc was referring to, and I dont find myself particularly worried about it. While some minor symptoms do match up, most do not and besides, it just doesnt “feel” right. Not like the original idea of cancer felt “right” when it was still a question in everyone’s mind but mine.

And even if I’m wrong and they do (eventually, moving at a cold snail’s pace) find something else amiss, I still cant do anything about it except rely on people who clearly and consistently assume I’m the “dumb patient” and tell me nothing of real value. So no point in fretting over it.

The only real worry is being saddled by folks like the Derm guy who seem utterly incapable of giving me accurate, sometimes technical information with which I can make an informed logical decision on how best I wish to proceed.

So for all the doctors I’ve met, or will meet, (and of course Doc is exempt!) I don’t particularly care anymore that 99.999% of your patients *are* best left slightly in the dark. I am that .001% that is not, and if you can’t be flexible enough to deal with an unknown like me, then get out of the fucking business altogether and make room for the “fresh out of school” doctors and nurses who haven’t yet become jaded from dealing with cranky people like me. Damn dinosaurs.

Simply saving my life earns only gratitude, not trust. For that, you have to open your mouth and share.

I’m not particularly worried about extending too much trust on that score anytime soon. (So says THIS cynical old jaded dinosaur.) laugh.

Oh, by the way. I got my call back and the original biopsy slides did indeed go out as promised. That suggests it took a week for that tiny little package to make it from one end of the sprawling campus to the other. A journey even *I* could make on foot in a few hours at most.

Idiocy, and he tells me to be patient? Not on your life, or mine.

Patric

Thursday, March 18, 2010

Clarification is in Order

It must have been the title of the previous entry.

Many people have expressed sympathy at, as one dear soul put it, “my sucky news” referenced in the previous entry.

Yeah, I guess it is at that, but honestly folks, I paid it so little heed as to be largely forgettable. The whole point of the earlier post was to bitch (no surprise there!) about the recurring theme of clueless, obtuse, so-called medical professionals.

I mean, c’mon. These people make life and death decisions, and yet so very few have the capacity to think outside their own box and address me as anything other than an
expectation
?

Gah, there I go again. Sorry. We’ll let it slide for now, no doubt under the proviso the subject will come up yet again because there is no way the entire system will change in my life time.

Oh, I should note that one of the transplant guy’s flunkies called today to tell me “Doctor is keeping an eye on your case, and as soon as we get the results back, he’ll call you.”

What a lovely sentiment, knowing I’ve not fallen through the cracks, nor been forgotten.