by Kris Jacen
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.
Too bad the information couldnt have come as a result of some interest other than my calling and raising hell. It’s the little touches that mean so much.
As for the rest, seriously. It’s simply not that big a deal in my mind. It sounds rather flippant, even for me, but it really doesnt matter if there is one cancer or a dozen. It can only kill me once. :)
Please, please, dear people. Don’t fret over it. I’m not, so neither should you.
Hugs!
Patric
The Mentor
Jambrea Jo Jones
Patric is always there for friends with questions and usually with a humorous response. There is no question too absurd or dirty for Patric to answer. Lol. I’ve spent many nights on the yahoo groups laughing so hard that I’m crying. And he always seems to have the answer. I’ve loved his lessons on the groups.
I had planned on doing a short story for Patric but thought that others were going to be doing that. I really just want to share how Patric has touched my heart. Who knew that someone that I’ve never met in person could have such an effect on my life. I certainly didn’t.
I can’t even remember the first time I ‘met’ Patric. I’m sure it was on Ethan Day’s Yahoo Group one night. I just remember how nice he was. It’s funny how some people’s personalities can shine through the internet and Patric happens to be one of those individuals.
Patric is also a fabulous author. After months of talking with him online I finally picked up one of his stories. I think it was Timeless. I enjoyed every word and couldn’t wait for the next story by him. I think my favorite is Santa Mug. I loved that one so much that I bought it as a Christmas gift for a friend. We had to give our favorite book as a gift and I immediately thought of Santa Mug. I even had to email Patric about it. That’s just what I do. Lol I find an author I love and I tend to gush and tell everyone that they need to buy the story. I’ll share the em
ail I sent because I happened to keep it. Patric has his own folder in my inbox.
We’ve been talking about the Santa Mug on Ethan’s.
I just wanted to send you a personal note because it was such a beautiful story. You grabbed a hold of my heart from the beginning and didn’t let it go until the very last word. Like I said on Ethan’s, it is heartbreakingly wonderful. You put so much into that short story and it really shows. I could FEEL the sadness weaved through. I love Max and his family is wonderful. I just wanted to hug Darren.
Wonderful story. Congrats Patric.
And he was so gracious when he emailed me back. If I could give that man a hug I would. When I found out he was ill, it about broke my heart. Here he is, such a wonderful and kind man going through something I wouldn’t wish on my worst enemy and I’m too far away to do anything about it. The only thing I could do was show my love on line. And I went about doing just that.
Patric, me and a few others were talking men. And really, when aren’t we? lol. I wanted to know what kind of man Patric found hot and he just so happened to have a picture. He shared with the group and we decided to name him. That is when I got the idea to write a story with Patric in it. To give a little back as it were.
I then began to pester Patric with questions. He might not say it was pestering, but that is just Patric. He answered with grace even when the topic became ‘top’ or ‘bottom’. Lol Like I said, there is nothing this man won’t talk about and I love every bit of him.
Through the months Patric shared his experience with everyone through his blog. I would get the updates on google and at first I’d be happy that I was getting an update because that meant he was still around. Then I would go and read it and be in awe of Patric strength. Well…as in awe as I could be with tears streaming down my face.
Don’t let Patric tell you any different. He is a strong man with a wonderful heart and I am honored and happy to call him friend.
love you, Patric
Xoxo
Sunday, March 21, 2010
Not fit for human consumption
Nor for consumption by rabid dogs with no morals, for that matter.
I’m offline until I’m alive again, or at least able to fake it. :)
Patric
Tuesday, March 23, 2010
When it rains, it pours...
Well... Seems as though the universe hasnt had its fill of making mischief, yet.
Just about the time I declaimed myself unfit for human consumption, the pain began.
Oh dopey me. I actually thought I could be stoic enough to handle THAT??
Ha! How the mighty have fallen.
I did manage for three days though. Now I just have to decide if I was clever, or foolish to wait.
End result was a visit to the ER, where I was diagnosed with pancreatitis. Generally speaking, it’s caused by either gall stones, or alcohol consumption, and of course I dont drink....
Really? One or two flavors of cancer isnt enough so we have to add pancreatitis and when thats stabilized sufficiently, we get to do surgery to remove the offending gall bladder entirely?
Do I sound bitter? I’m not, particularly. If anything, I’m rather amused that it takes this much to run me into the ground, and yet I’m still squirming.
Nyaaa! :)
Patric
Thursday, March 25, 2010
The Joys of Flatulence
Fat guys with beer guts do it loudly.
Lace covered ladies do it demurely.
Little kids do it, and find it the height of hilarity.
Dogs do it. Cats do it.
Even fictional characters do it:
The wolf paused again, the tip of its tongue protruding from its black lips as though caught by surprise, and Marshall briefly wondered at the way it seemed to respond to his voice. The long pink tongue extended and the wolf swiped at the wound a few more times before settling back on its side, still regarding the man completely.
“You’re an ugly fucking thing, do you know that?”
The wolf farted and Marshall laughed. The sound surprised man and animal in equal measure.
“I suppose I deserved that,” Marshal said, “and I’m an idiot for talking to a beast.”
In other words, everybody farts. Unless you have pancreatitis and all the plumbing has taken a holiday. :)
If anyone has said to me a week ago how good it felt to fart, I’d have accused them of being fetishists. Now I have a whole new perspective. An aromatic perspective, that is. :)
I shant bore you with the colorful details (brown is a color, after all) but breaking wind bodes well for the liklihood of doing the surgery laproscopically. Definitely the preferred method. :)
Oh, and I was finally approved for a clear liquid diet today. Joy! I found heaven in a cup of chicken broth. Tomorrow I’ll go for beef, now that the kids brought me a bottle of Worcestershire. And the nutritionist didnt even flinch when I told her about it. How cool is that?
Things are looking up.
Surgery is tentatively scheduled for March 31. I’m tempted to beg they hold off until April 1st. Something about all this being a joke appeals to me. :)
Hugs all!
Patric
Thursday, April 8, 2010
I’m running out of titles, and time...
Once again, I am too far behind with my updates to escape beneath the cover of abject apology.
This time though, it’s from too much rather than too little happening.
Put as succinctly as possible, I’ve become a hospital groupie. :)
Of itself, the surgery went fine, as expected. Unexpectedly however, the original symptoms continue, largely unchanged. I came home last week, rolled around with what I was told was “normal after surgery” pain, went in for my week after check up, and was promptly re-admitted the following day.
Seems there is something hinky with the blood test results that reflect liver activity.
Yeah, right about now I am envisioning honking geese. :)
Tomorrow, I get to experience a HIDA scan, and a procedure which has an acronym that sounds something like ERCP and actually means a camera down my throat.
I hope they let me shoot video. :)
In other news, Papa floated me the cost of a new laptop so I can continue editing the audio books, which is both a god-send and a curse. The former because that’s my sole source of income (oh how the mighty have fallen. lol) and the latter because it’ll never be enough to pay him back, and yet he still insists “I am good for it.”
That is without a doubt his strongest expression of love for me he’s ever uttered, and I am humbled to inconsequentiality by it, especially because we both know without doubt that the cancer is back with a vengeance.
With the latest biopsy results *finally* in, we don’t exactly know what kind of lymphoma (the results cast doubt on the veracity of the original diagnosis) but at this point the flavor is little more than semantics. Doc and I can see it develop very nearly on a day to day basis. What to do about it remains a question until the whole stomach thing is resolved first.
I’ll not be terribly surprised to find one is fueling the other, frankly. As Doc said, “stranger things have happened.”
Ah well. Tomorrow, the sun rises.
If you don’t see me on the lists, or answering email messages, or otherwise making my presence known, it’s because I’m standing at the window staring out at it, or someone is taking pictures of my guts from the inside out. lol
Cheers folks! Thank you all for the considered, thoughtful comments!!
Patric
Linchpin
Mary Calmes
For Patric Michael
One
My mother could never just leave things alone; she had to do something. It was her way. The something normally translated into pushing when she should have backed off. So this was why she had called in the cavalry in the form of my sister Trish and her husband, Ethan. Because I hadn’t done what my mother wanted, she’d sent
them to intercede on her and my father’s behalf. When that didn’t work, they all got on a plane—my parents from Ocala, Florida, where they had retired, and my youngest sister, Deb and her husband, Alex, from Boston. I was the only one who had left the East Coast; the rest of them were all still there. I had gone west and stayed. College in San Diego had translated into a new home.
“Mark, you need to listen to me.”
They were trying to triple-team me in the kitchen—my mother and my sisters. I turned my head and looked at my mother over the rim of one of the large café au lait mugs that the love of my life had brought back from Madrid the last time he was there.
“Your brother needs help,” she told me.
I grunted.
She sucked in air through her nose. “He needs to talk to someone. He needs to be medicated.” She ran down the list for me. “You don’t just go through what he did and just set your life back on course. He needs to be committed.”
Or not.
“Mark!”
“Mom.” I tried not to chuckle as I put the mug down beside me on the counter by the sink. “I love you so much, and you’re as cute as a button, and I’d love to shrink you down and carry you around in my pocket all day long.” She was starting to smile, unable to resist her oldest child. “And I’m not trying to downplay your concern, but in this instance, I think you’re still freaked out about what could have happened instead of what actually did, and that’s coloring your perception.”
All her emotions were sliding across her face because she’d sort of been rolling around in the catnip of my obvious adoration, but then I had smacked her with the truth.