Last Updated: 17 April 2008, 11:10PM
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Since I find that this blog is being visited by the public-at-large, allow me to explain just a bit. I'm a 56-year-old esophageal cancer sufferer. I have been diagnosed as having “Invasive adenocarcinoma of the esophagus with metastasis to stomach and lymph nodes.” I've had 5 rounds of chemotherapy and have started radiation therapy.
This blog was started to keep friends and family updated as to what is going on in my life, how I feel, when my treatments are, etc.
It is also a diary, where I try to get rid of my frustrations by pouring my heart out into these "pages." So, if you choose to read a little, be prepared for some "belly-aching." Now, how's that for a pun? Especially since I have a tumor in my stomach?
If you got here from a link on Sunni Maravillosa's web site, you won't find a scholarly discourse on Liberty and Freedom. However, since I do believe in Liberty and Freedom, my beliefs do come out in my posts, as evidenced by the link at the bottom of this post. As I said, this is primarily a diary of my life. But feel free to stick aound and browse to your heart's content, if you have the time.
This schedule will remain at the top of my blog until further notice. Any NEW POSTS will appear directly below this one. Claro?
~~~~~~~~
Notes
~~~~~~~~
My Short Term Disability paperwork came back stating that they don't want me working at all. So I won't be working until after the surgery.
~~~~~~~~~
SCHEDULE
~~~~~~~~~
3/21/08 - 07:15AM I'm hoping that I go in for my last PET Scan today.
3/24/08 - 02:20PM Lab blood tests.
3/24/08 - 03:00PM Consult with Dr. Himmy about lab results and PET Scan results. I should find out what is in my future at the same time.
Since I'm not working, I deleted my work schedule for now.
~~~~~~~~~~~~~~~~~~~~~~~
MEDS
~~~~~~~~~~~~~~~~~~~~~~~
Pain Meds Schedule:
Packer Candy – PC; Time Released – TR; Short Term - ST
Naproxen Sodium - NS
02 AM: PC-ST 5 mg.
06 AM: PC-ST 5 mg.
08 AM: NS 220 mg.
10 AM: PC-TR 20 mg, PC-ST 5 mg.
02 PM: PC-ST 5 mg.
06 PM: PC-ST 5 mg.
08 PM: NS 220 mg.
10 PM: PC-TR 20 mg, PC-ST 5 mg.None.
Blood Pressure:
Anti-Cancer:
Round 1
Round 2
Anti-Nausea:
- Aprepitant, anti-nausea.
- Aloxi, anti-emetic, IV use only!
Others, or as Needed:
- Protonix, proton-pump inhibitor.
- Dexamethasone, steroid to reduce fluid retention.
- Lomotil (Lonox), anti-diarrhea.
- Mannitol, diuretic/laxative?
- Neulasta, Granulocyte colony-stimulating factor
- Lovenox, anticoagulant.
- Warfarin, anticoagulant.
- Mobic, non-steroidal anti-inflammatory.
~~~~~~~~~
Need more info here, let me know, OK?
~~~~~~~~~
DPC - De Pere Clinic
VLCC - Vince Lombardi Cancer Center.
ABCMC - Aurora BayCare Medical Center
EGD - EsophagoGastroDuodenoscopy
189 comments:
For those of us not in your immediate area, the alphabet soup is a bit challenging ;-)! VLCC? ABCDMEJAH? WTF are all those letters supposed to mean ;-)? I guess this is my smart-ass way of asking for a bit of clarity on the acronym front...
xoxox
Amy
Thank you for your succinct input, mi hija! And as usual, you are correct. I have been noticing that things that may make sense to me, doesn't always make sense to others. That's why I ask. So keep me honest, OK?
LOL....Ben I see Amy is a chip off the ol' block, eh?
Thanks, Amy. I was feeling a bit challenged, too.
You see why I love my kids so much? They keep me in line when I need it; and they do it so well.
Otherwise, they just let me be. What else could you ask for?
Hrmmmmm december 31th 2007 now im wondering is it just me that sleept really good.......... or was this to keep the post at the top so you could keep track of the schedule (good idea)
TTFN
VLCC = Vince Lombardi Cancer Center?!?! You've got to be kidding me! Did Vince Lombardi have cancer, or are they just honoring the God of the Green Bay Packers, once again? Just curious ;-)...
Amy
Probably both; Vince Lombardi Cancer Clinic.
I think your meds sound like the hookie-pookie!
'You put the blue one in - you add the white one next, you put the liquid in - and you whish them all about......."
Next you'll be doing the 'chicken dance'!
"Next you'll be doing the 'chicken dance'!"
Will you be posting video footage of this?
Aren't you guys getting the live video feeds? Maybe I should check the cameras.
Thank you, Robin. That's EXACTLY how I feel about my meds schedule right now. I'm the one that's sick and I have to keep track of all this.....
Shrek comes to mind in reading your post today - hint "flatulance"
What a visual.......and personalities are quite similar. Interesting enough, when I first met you, this is the character that came to mind - although certainly not for the same reason.
Now I'm going to have to rent Shrek just to find out what you meant by that! Or find someone with kids....
Which reminds me, I'm gonna have to rent Young Frankenstein, too. Someone referred to it a couple of weeks ago and I meant to look it up.
So, I repositioned the cameras. How's this look? :-D
Three of my FAVORITE movies are Shrek 1, 2, & 3, so they are NOT just for kids ;-)! Although, I really HAVE to say that Shrek never reminded me of my Dad. Hhhhmmm, I'll have to ponder this one..... The being a loner recluse thing, maybe sometimes.... but I'd NEVER call him an ogre ;-). We'll have to do a Shrek movie marathon when I'm up there ;-)!!
BTW, Dad, who the heck is Nettie ;-)? Is this someone I've met in real-life that just has a different on-line name? Or someone who I don't know at all? Either way, Hi Nettie! Just being nosy ;-)....
LOL Hiya, Amy. No we've never met in real life. Your dad and I frequent some of the same online forums and he turned me into a Browncoat. My daughter and I were fortunate enough to meet your dad in person a little over a year ago when we were in Green Bay.
Shrek comparison - 'wit and charm' -
"onions have layers"
Aaaaahhhh, ok, now I see re: Nettie, AND re: the Shrek comparison. Thanks ;-). Robin, I guess its funny how kids see their parents vs. how others see them . Layers, wit and charm !?!?!? I guess, but he's still just DAAAAAA-UD ;-). (To make sure all understand, I am just really teasing my father with all of this.)
Shrek "Ogres are like onions"
Donkey "They stink?"
Shrek "Yes. No!"
Donkey "Oh. They make you cry"
Shrek "No"
Donkey "Oh. leave them out in the sun, they get all brown and start sproutin' little white hairs"
Shrek "NO. Layers. Onions have layers. Ogres have layers. Onions have layers. You get it? we both have layers"
(followed by a smartass remark from donkey that i will leave out unless requested) and yes i might spend alittle much time watching toons/animated shows so just watch out stuff like this make me post (well when i finaly have the time)
but back to the ogre, i can see some of Ben in Shrek, the "the man" (even if a tad short) is not gonna tell me to get out of MY swamp, it is my swamp and ill stay right here. Hrmmm ïf you guys havent seen them by the time we reach WI then i should pack them up (well a tweaked version made for us players) im sure i have all 3 hiding among my many toon disks *snicker"
TTFN
Amy is scheduled to come up next month, actually in about two weeks, and hopefully will bring them with her. If she doesn't, I'll give you guys a holler.
But you did bring up a good point. I haven't gotten too political on this blog; that's not it's purpose. But John Adams once said, “The moment that idea is admitted into society that property is not as sacred as the laws of God, and that there is not a force of law and public justice to protect it, anarchy and tyranny commence. Property must be sacred or liberty cannot exist.”
I believe in Liberty. I believe in Freedom. Not the tyranny that the politicians call Freedom, but the real deal. As Jefferson said, "Rightful liberty is UNOBSTRUCTED ACTION ACCORDING TO OUR WILL within limits drawn around us by the equal rights of others."
So, if it IS my swamp, to use your example, Ronny, then I can do with it what I will. And if I refuse to do what others want me to do with my "sacred" property, which includes my life BTW, then that may seem like "stubborn" to some.
Now, I'm not saying that that applies to anyone posting on this blog. I'm just speaking in general terms.
That's my story and I'm sticking to it. :-D
Aren't horoscopes great? - at least when they say good thingsl!! As you mention, harmless fun, so it's interesting to read each day and see if you 'fit'.
Okay, with the reaction to my Shrek comment - Emilia and I spent Saturday with our own Shrekathon. Great fun, and we talked in great detail about our thoughts of Shrek - ogre.
Sooooo, "Shrek", aka Ben, when you watch with Amy, be sure to watch them again and again- lots of stuff you may miss the first time around. Or at least I did.
sweet dreams...
AND, by now, I have two kids primed to make some comparisons.
Should be interesting!
forget the buzzing and shave.....go for a wax!
I was just playing with a tweezers and found that not all of the hair is ready to fall out. Some of it still resists efforts to extract it. So, a wax job might not feel as pain-free as one might imagine.
Besides, I already have the equipment for the buzz and shave.
Hey HB! We been keeping up with your blog, and of course frequented the big W (wal-mart) and had to purchase a new computer so we can read at home. The kids asked about you after we had visited you with mom. Spud is in football,starting center and the team is 2-1. He also made the Native American Indiginous Games for archery. (Gpa would be so proud.) JRae also made it for archery, but unfortunately they might be removing her age group. we'll have to see.
Hal this is little Oscar i would like to get to go up north by grandpa's cabin and shoot the 22's at soada cans
Hey D, and Spud!! I'm glad to see that you made it out to my blog! Welcome. It's just me shooting my mouth off (my fingers off?) about anything that comes to mind. I even talk about my illness, too.
I saw some T-shirts on a couple of folks at the big W yesterday that had a lacrosse stick on them and I thought of Spud. I thought someone had told me that Spud was in lacrosse as well as football. Let me know when the games are, or send me a link to the schedule. I remember going with your Gpa to watch your Uncle Tim play football.
And congrats on the archery to both Spud and JRae (I like that nickname, JRae!). Yes, Gpa (Rawley to the rest of us) would certainly be proud of his grandkids.
Now, why would they remove any age group for girls? Girls can shoot, too! If you need someone to hold protest signs, keep me in mind!
Spud, I'd love to run up North some weekend to shoot tin cans.
I just checked and found that my implant would just be at the edge of the butt of a rifle when mounted. I would have to shoot only a .22 and I'd have to be cautious about mounting the rifle, but it could be done. 'Course pistols wouldn't be a problem. :-)
This weekend and next I have stuff going on, especially next weekend. My daughter will be home and I'll be wearing the pump. That means I'll have a needle stuck into the implanted port in my right shoulder. You guys will have to come over to see Amy again (your Gma has already made that request), and take a peek at what doctors can do to people when they're not looking!
So, I won't have a weekend available until October 13-14. After that, I'm going to be going in for surgery some time; I just don't know when yet. But I'll post it when I find out.
We'll have to check with your Uncle Tim, too. I have keys, but I don't know if they'll still work. And, he's getting ready for that wedding thing. Which reminds me, I have to get my invite filled out and returned!
So, I'll have to dig out my .22s and get them cleaned up. It has been too long since I've even fired a shot. I hope I remember which end the bullet comes out of! :-D
This is starting to look like a game of dominoes......well, sort of.
Have you ever tried "Mexican Train" dominoes, if yes, you already have the little noisy train. If no, you'll need to purchase one of the cute little suckers.
Each time you correctly take the pills, you push the train button (makes an annoying sound), BUT, you are rewarding yourself for getting it right.
As for the posting, I like to read them daily.
I'd never heard of Mexican Train dominoes until you brought it up here. But then, my kids are grown and I live alone. OK, lived alone. But Ben works a different shift than I did, and plays the online games.
A couple of thoughts, first how am I to know, in the middle of the night whether or not I took my meds correctly? That was the whole idea behind the pillboxes. Usually, I'm sleepy and guessing I'm taking them correctly.
Second, since I now have a roommate, I don't want to be making annoying noises in the middle of the night. Especially since I had to dig up my old boat horn so that if I did have any problems in the middle of the night and couldn't speak, I could still summon help. The train whistle just might summon some unneccesary help.
But thanks for trying to make getting up in the middle of the night to take my meds more enjoyable.
So I won't be working until after the surgery. ~*~*~*~*~*~*~*~*~*~*~*~*~*~
Does that mean surgery is back in the schedule?
"Does that mean surgery is back in the schedule?" Yes, as far as I know, although it hasn't been scheduled yet. This is one of the problems associated with the "Treatment by Team" style of Medical Management. And with a part-timer, no less.
When I spoke with the Head Nurse (BTW, not what it sounds like) for my GI doctor, she was under the impression that I would have surgery.
I can't see any other way to handle this, but then medical doctors and I don't always see eye to eye.
ok I was just confussed cause your Tuesday, September 11, 2007 blog post said it was off.
YOU'RE confused? I'M confused by just about everything to do with this Medical Group. More on that AFTER I've had the chance to cool off! And get some sleep.
rut rho.....it doesn't sound like things went well today. I hope you're resting now.
Btw...I lifted the ribbon from your blog and posted it on my Myspace page...I hope that's alright. I'd like to raise awareness of this type of cancer.
Nettie said, "rut rho.....it doesn't sound like things went well today. I hope you're resting now."
Yup, it's ass-kickin' time, only unfortunate thing is, it's my ass that's being kicked.
Yes, I did catch a nap this afternoon while pretendign to watch movies with Mousebane in my lap, draped across the chemo-pump. :-O The Dexamathasone steroid I take to reduce edema can cause problems sleeping. Tomorrow is the last day I have to take it. Then maybe I can sleep normally again.
I did get a diuretic today to get rid of the water causing the edema. So guess what I'll be doing tonight when I should be sleeping...
Nettie also said, "Btw...I lifted the ribbon from your blog and posted it on my Myspace page...I hope that's alright. I'd like to raise awareness of this type of cancer."
*sniff* To quote, "...the honor you do me flatters my--my honor." And it's not as if I haven't "lifted" a few things in my time on line. And some of those things were from your sites. You can always sue...
I do have some incredulous news I'll want to tell tomorrow, but I want my head clear "for the tellin'." How's that for a cliff hanger? I'm still pretty groggy.
I'm off to see if I can "watch movies" in my bed with the pump humming in my ear instead of the cat purring.
My random noise generator I use because of traffic should have a 'cat purr' soundtrack on it.
Blah was just told that i need to get a "passport" for my "PC" if i wanna bring them and might not be allowed to bring enough to be of any use to me *bleh* silly FDA
If you'd prefer, I can remove the link. I added it because I'm cheering for you; also, we apparently have friends (or maybe a more accurate term is "acquaintances") in common, and the link might make it more convenient for them to check in on you too.
On more substantive matters, have you visited the World's Healthiest Foods to check out foods that can help you beat back the cancer?
Best wishes to you!
First, thanks for stopping by all the times that you have. And thanks for cheering for me! I’ve been a big fan of yours for years so to be included in your links had shocked me, but at the same time honored me. Thanks for that as well!
I learned of my addition to your links while I was in the hospital. When I mentioned it to my daughter, she mentioned she had noticed increased traffic. When I got home, I checked to find that traffic was coming to my blog from yours, but they weren’t staying at all. Apparently they weren’t finding what they expected.
I surmise that they came looking for philosophy, for principle, and found a diary of a cancer patient. They might have gone away confused, wondering why such a link was on your site. So I thought that I’d explain. While mine is not a site that deals with liberty and freedom in general, it does deal with some specific applications of each with regards to a cancer patient. Maybe I could word it better; I don’t know how right now.
And, it may just be my imagination, but after changing that post, folks linking from your site to mine started to stay around a little more, for a few more page views at least. But, I haven’t really spent too much time digging into it. It was just my impression.
So, if you’ve read much of my posts by now, you should know that if I had wanted you to remove my blog from your links, I would have asked. And knowing you to be the principled person that you are, I know that you would have complied with my request. But thanks for asking.
I’m not a big fan of registering on a site just to comment. But I have commented on yours in the past on a variety of issues. So, in actuality, you have eight readers. :-)
Speaking of past comments, if you have been reading my blog then you would know that the concern you had a few years ago about cooking in cast iron can be alleviated by the use of IP-6, the active ingredient in fiber, to chelate the excess iron from your body.
And I did save your World’s Healthiest Foods link to my favorites. When I get the chance, I’ll dig into it a bit more. I believe in healthy foods; just had some fruit for lunch. But, I also believe in Chocolate Cayenne Truffles!!! I should make some more; Valentine’s Day is coming up!
So, thanks for everything, Sunni, and Keep The Faith! On second thought, keep spreading it around!!
Hi hb, and thanks for responding to my ramblings. I am honored that you've been not just a longtime reader, apparently, but that your "chemobrain" hasn't eaten into some of the stuff you remember from my site! (MAL does use the IP-6.)
I understand the disinclination to register just for commenting; we might be able to come up with a different antispam measure—besides those dreadful captchas, I mean—but I'm not at all sure about that.
If you're able to eat again anytime soon, get some Italian (flat leaf) parsley; it's apparently good anti-C stuff. And you're a truffler too? Cool! It'd be fun to get together and talk chocolate some.
I remembered the iron discussion because I participated in it. I'm a big fan of cast iron cookware and use a cast iron wok for a lot of my cooking. (If you do look back, think Lone Ranger.)
Although not a fan of fresh "Mexican" parsley (cilantro)--to me it tastes like soap--I do use the dried version. It helps get rid of toxic heavy metals. But I hadn't heard about the "Italian" parsley. I'll have to give it a try when I'm back eating again.
As for matters chocolate, I have watched with interest your efforts in the truffles field. And we have discusssed my propensity for Mexican-spiced hot chocolate; cafe, cinnamon, and cayenne pepper. I just checked my archives and I see that I haven't sent you my Trufa de Chocolate y Cayena recipe. I'll either post a link to it on my blog or send it to you en clair. Still haven't set up PGP yet!
But, they are kinda hard to make, as you know, lot's of effort goes into making them.
I remembered the iron discussion because I participated in it.
Ah, okay. By the way, if you ever feel an itch to comment there nowadays, pop your thoughts in an email and I'll post 'em on your behalf.
Although not a fan of fresh "Mexican" parsley (cilantro)--to me it tastes like soap--I do use the dried version. It helps get rid of toxic heavy metals. But I hadn't heard about the "Italian" parsley. I'll have to give it a try when I'm back eating again.
I have never heard cilantro called Mexican parsley before—how interesting. Italian parsley is also known as flat-leaf parsley (as opposed to the curly kind, a very common garnish item). It looks a little like cilantro, but not enough to be confused with it, in my opinion. We grew it by the armload this past summer; I dried a bunch but it's all gone already. My son likes to nibble on it; and I'm not about to complain about a habit like that.
As for matters chocolate, I have watched with interest your efforts in the truffles field. .... I just checked my archives and I see that I haven't sent you my Trufa de Chocolate y Cayena recipe. I'll either post a link to it on my blog or send it to you en clair. Still haven't set up PGP yet!
Don't do that just on my account—it's nice but not (yet) necessary for all email. It'll be interesting to see how close it is to my Inca Gold truffles; I came up with that combination on my own ... but didn't really expect it to be completely original. I'm trying to get things caught up so I can begin truffling soon ...
But, they are kinda hard to make, as you know, lot's of effort goes into making them.
Yep. I'd be honored to make some for you, though.
PGP is something that I've been meaning to do for years. I even talked to Tom E, another of our mutual friends, about it last year. I still have the info. Now if I ever get the motivation. I didn't say that! I meant if I ever get myself motivated. I don't need the motivation you alluded to with your "(yet)." ;-)
Reviewing my archives, I see that I had wanted to talk to you about "medicinal" truffles; using turmeric and ginger, along with cayenne pepper, in truffles to help with anti-inflammatory pain relief. You know, "a spoonful of sugar helps the medicine go down..." And a couple of truffles a day "couldn't hoit." And with dark chocolate, they would qualify as part of a Polymeal!
Any time you need some taste-testing done, you just remember that former QA/QC manager in Wisconsin. I'll be glad to help if my chemo-terrorized taste buds will let me! :-D
Any time you need some taste-testing done, you just remember that former QA/QC manager in Wisconsin. I'll be glad to help if my chemo-terrorized taste buds will let me! :-D
I don't think I can count the number of times I've considered offering to send you something, but then backed off ... precisely because of the chemo-terrorized taste buds. I have a very clear memory of trying desperately to get my mother to eat anything (she had brain cancer) in order to keep her strength up. Finally, she said she'd like some of her favorite pizza, so I happily ordered it for her, picked it up, and brought it to her. She looked so happy, anticipating that first bite ... but with just one chew, her face crumpled, and I knew it didn't taste good to her at all. I don't think she even swallowed that tiny bite. I think that's when I realized the enormity of what we were up against with her ...
Er ... perhaps we should move this conversation to email at this point? If I ever had your eddress, I no longer do; mine's available on the "about" page at my place. My feelings won't be hurt if you decide not to go that way, though.
Take good care!
Pizza-a-a-a *drool*
Just before being diagnosed, my son and I drove down to Florida on vacation. I don't fly anywhere anymore. They don''t like my "toys" on airplanes.
We had to stop in Kankakee around lunch time so we ordered our favorite pizza from back when the kids were younger. Although it was recognizable as an old favorite, it still didn't taste quite right. Don't know if it was a different supplier of ingredients, or if my taste buds, or my tastes had changed.
My condolences for your troubles with your mother's cancer. It can be rough for both the patient and those who love them, as I'm finding out.
Yeah, I'll fire off an email tonight just to say "hi."
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