Chocolate Cayenne Truffles

OK, this is where I got my recipe from for my famous, or at least infamous, Trufa de Chocolate y Cayena. It is a bit on the “warm” side for most folks, but the chocolate does “smooth out” the heat.

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I stopped at Bed, Bath, and Beyond today after RT, looking for a lotion applicator. Didn’t find anything worth mentioning. So, the search continues.

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That meant that I got home a little later than normal and for some reason, I couldn’t fall asleep, even under my new quilt. So, I’ve been up all afternoon! Don’t you just hate it when that happens?

But I guess my lack of an afternoon nap was offset by how good I felt upon waking this morning. I wish that I could wake up every day feeling like that.

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I was only partially kidding when I complained that a side effect of one of my new anti-cancer drugs was stomach pain. I don’t know now if it’s the tumor or the drugs that they have me on that is causing my stomach pain. But I think that the stomach is getting better. Then again, I’m on pain meds as well. It could be just the hydrocodone talking.

Ah, life in the fast lane!

Not much to say today so I’ll cut this short.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

My Sudoku Quilt

I’ve been asleep most of the day; it helps with the fatigue. And right now, while I can sleep, I have been taking advantage of it. Besides, I don’t feel the side effects of the chemo when I’m sleeping. I’m still waiting for the radiation side effects to kick in.

But then, while sleeping, I don’t get a whole lot done, either.

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I’ve started to use a lotion provided by the Radiation therapists to be proactive with my skin care. But I find I have trouble reaching everywhere to apply it. There must be some sort of applicator that can allow me to apply lotion all the way round my chest and back. Anyone have any ideas?

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And don’t forget about that Name That Tumor contest!!

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My son, several years ago, got me a Sudoku program for my little pocket pc. As I’ve said here before, I love Sudoku. It’s a logic puzzle that’s very simple, but can require great thought. It’s taught me a lot about thinking.

The pocket version of Sudoku includes the ability to change the numbers into colored tiles. For some reason, for me and my chemo brain, I can run through an easy game of Sudoku using the colored tiles in as little as 4 minutes. Using the numbers, it takes me almost twice as long; different part of the brain involved, I guess.

So, today there’s a knock at the door; the postman had left a package from Nettie! I was expecting something from her; she had said in a comment she was sending something to brighten my day, my way.

Well, she did, and it did! Nettie sent me a quilt! And that’s even after I found errors in her “masterpiece.”

I opened the box, pulled out the quilt, and was stunned. I didn’t know what to say, which is pretty unusual for me. The first words out of Ben’s mouth when he saw it was, “That’s pretty!” And I couldn’t agree more. And I didn’t even think of “inspecting” it!! :-)

That’s when I realized that it was in the form of a Sudoku puzzle, correctly solved BTW, with brightly colored tiles. I don’t know if that were intentional or not, but I just LOVE it. I do love the bright colors, as well. I’m sure that you must have noted the bright Mexican blankets in some of the photos of the dogs and me.

So, I had to take a picture of it to share here, and immediately after that, I straightened up my bed and put it on top where I’ll always be able to see it. I slept under it all afternoon.

Thank you, Nettie! You don’t know how much this means to me.

My friend, Nancy, called to see how I was doing tonight, so I told her about the quilt. Her husband, Rawley, had been my best friend and hunting buddy. I think I liked him so much because he was the older brother I never had. But, in addition to that, he had what I just call a “good heart.”

Talking to Nancy was when I realized that Nettie and Rawley were quite similar; Nettie has that same “good heart” quality. I wish that I were more like both of them. Someday, maybe I will be.

So, Thanks again, for your beautiful and generous gift. I think this is the brightest quilt that I’ve seen you make. I love it!

Kunolunkwa!

And Two From Column B

Tired today. Very tired. I only got about six hours of sleep last night, even with the sleeping pills. But at least I didn’t end up like Heath Ledger. What a shame! I’ll always remember him with his ink-stained teeth in The Patriot whenever I think of him.

But I almost napped this AM before my appointment, and slept three hours after I got home.

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BTW, my last meeting with Dr. P. before chemo on Monday had him ask if that had been my sister with me the last time we had talked. I said yes, her and her husband from Denmark. He didn’t say anything else about it. ????

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I started to be proactive with my skin care, so I dug out my vitamin E crème that Amy likes so much and applied some today. When I got to the treatment room I asked about skin care and where the beam was actually going to affect my skin.

The technicians there, three ladies named Amy, Amy, and Paula (just to be different), are great! They’ve always been cheerful whenever I was there. Today I complimented them, Amy and Paula, on how well they work together. Great communication, very fast, and fussy. When you’re going to be running all that radiation through my body, I want you to shoot straight, and be fussy about setting up the target, ME!

BTW, here’s a couple of links to images of the equipment that they are using.
They can image and treat with the same piece of equipment. And they can modulate the beam size to shape it so that they can miss the important stuff and dump as much radiation on the stuff that needs it. Sub-millimeter accuracy!!

So, the techs set to work and diagrammed for me where I’ll need to medicate myself at least four hours before treatment. I thought that you might like to see where and how big an area we are talking about so I took a photo when I got home. I look like one of those photos explaining why you don’t leave the kids at home with magic markers. But, that’s the size and shape of the tumor. They’ll adjust the aperture differently for the treatments from the left and right sides. I can barely touch the spot they’ll use on the right. The left isn’t too bad to get to.

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I did take on Nettie's challenge and found several panels in her quilt that had what I thought might be errors in them depending on her standards. NEVER ask an old QA guy to inspect your work!! I sent two emails but she hasn't replied yet. I hope that she's not mad at me! :-D

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I thought that since I was hungry today that things had gotten better. Apparently not. I stopped on the way home and picked up a pint of Chinese chicken noodle soup and an egg roll. I barely got an eighth of the soup in me when the tumor started acting up. That ended that meal. Back to the Ensure.

We should name this tumor! We could have a contest with prizes to the winners and runners-up. I could send you pieces of whatever we name him perfectly preserved in alcohol for you to put on your shelf. What do you think? I wonder if I can set up a poll on this software.

In the mean time, I started the “Late Diarrhea” phase of my chemo. I had two choices, early within 24 hours, like almost immediately, or later after the 24-hour period was up. I didn’t want to make a choice, but apparently that wasn’t in the game plan. As I said, a battle of side effects.

In addition, while lying in bed, I did get a sharp stabbing pain in the lower left back, above the hip but below the kidney. This one might be the back pain they warned about. We’ll see how things turn out tonight.

And my taste buds are starting to fade, I think.

Kunolunkwa!

Edit Note: The picture of my chest had been taken in a mirror so I had to reverse the image to portray my tumor accurately. 1/26/2008

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

I Told You So!

This is just great. It seems that one of the new cancer drugs, Carboplatin, can cause stomach pain, loss of appetite, severe diarrhea, weakness, and hair loss. I’m gonna lose MORE hair?

And of course, I should consult with my doctor before taking vitamins, minerals, and other herbal supplements. I can’t receive “live virus” vaccines. And I should avoid the sun—there goes my SAD relief. Nettie, can you get your package back? You should have seen the burqa I had to wear just to blow some snow today!

I may also experience temporary vision loss, difficulty walking—I may have experienced this already right in front of Ben, yesterday—and pain in the back. Now, I know I already experience this. It started yesterday but I believe that it is my right SA joint and not kidney pain. I believe that I sat wrong in those lousy recliners they have.

The Irinotecan may also cause severe diarrhea and stomach cramps. It may impair my thinking and reactions. “Be careful if you drive or do anything that requires you to be awake and alert.” How’s that for covering your butt?

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Some good news on the eating front, I did have a 10.5 oz. can of Chicken a la King for supper tonight without much pain; with a lot of rumbling and my “hiccups” as an after dinner entertainment treat. And my last pain meds had been about 11:00! At this rate, I’ll be eating solid foods by the weekend. But by then I won’t be able to taste them.

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Note to Ben: We were discussing the body tissue parts I have been bringing up. My thought had been that it was related to the mucositis I had been experiencing. Here is a quick explanation of the time lines involved: “Mucositis due to chemotherapy typically begins 3 to 5 days after the start of therapy, peaks at 7 to 10 days, and slowly subsides over the next week. Mucositis due to radiation usually appears toward the end of the second week of treatment, plateaus during the fourth week of radiation, and may persist for 2 to 3 weeks after treatment is over.” We’re talking mid-March, here.

So, two days of radiation therapy would not be responsible for any digestive tract lining sores, yet, and therefore not responsible for any body tissue parts produced recently. My experience with chemo is consistent with the timeline, however, and those “parts” could have been the result of mouth sores. But with this showing up now, I don’t even have a guess what they are, and where they’re coming from.

One must remember, too, that mucositis can involve the digestive tract lining from the mouth to the anus. My tumor is part of that lining in the stomach.

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I finally ran across an epidemiological study; this one for the Irinotecan. No wonder my prognosis is so low. In one study alone 7.3% of the patients on the Irinotecan died within 30 days of the last study treatment. 9.3% of those on Irinotecan and 5-FU (flurourasil, remember the pump?) died. That’s just the possibility of the side effects of the drugs killing me. We’re not talking about the cancer, yet, just the treatment of the cancer.

Can you see why I’m concerned when my doctor seemingly ignores my concerns about my symptoms? This apparent lack of concern about this body tissue comes from the folks who missed a second, potentially more dangerous PE: my blood clot in my right lung.

Back in my Quality Management days, I used an illustration that I’m about to use here. Imagine you have a machine with 100 parts. Each part has a reliability rate, a survival rate if you will, of 99%. It will fail only 1% of the time. And this machine needs all 100 parts to be working in order to run. Simple, right? How often do you think your machine will be running? 99% of the time? 75%? 50%? If my math is still any good, your machine will be running only 36.6% of the time. That’s a 36.6% survival rate!!! Despite each part having a survival rate of 99%, by the time you add the rates of all the parts together, your machine will be broken down twice as much as it’s running during the week!

Now imagine that one anti-cancer drug has a “failure” rate of 7.5% And, I’ve been on five anti-cancer drugs now. I don’t know the failure rates of all of them, but I imagine that they’re comparable. That means that I'm down to a 67.7% “survival” rate just with the drugs alone. And I still have the effects of the cancer itself to consider.

Can you see why I’m not a big fan of Conventional Medicine?

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Oh, the VLCC changed my chemotherapy routine on me and didn’t tell me. Of course, I hadn’t looked at my appointment card, yet, either. I would have gotten there, but not without some discussion.

I did go on line at their website yesterday to check on my appointments, but for some reason the computer lost ‘em. Probably correcting my name changed the whole system. The email I sent them on their message system asking what happened to my records was returned to me, via email, with my profile info, but no other response. ??? I'll check later this week.

Anyway, I had been getting chemo every three weeks. With the new drugs, I will be getting chemo once each week for three weeks with one week off. They had told me to come back the 28th, but the 28th of January would have been way too early for another treatment according to the old schedule. So, I assumed the 28th of February. If I hadn’t gone looking for my “ten-day” appointment on-line, and then in person, I might have missed my next chemo, even though I would have been right next door.

You would think a change in routine like that might need to be communicated to the patient. Especially, chemo patients with a possibility of the side effect of “chemobrain.” Especially after I’ve told them that I suffer from chemobrain. And the new drugs I’m taking “impairs my thinking.” Ya think?

Oh, I laugh and joke, and try not to show how much it does affect me, but THEY should know from their experience by now. And then the doctor gets his nose out of joint when I try to make sure about things coming up. *Sigh* Ya just cain't win....

And I have an appointment with Dr. R., the oncologist, tomorrow that I hadn’t heard about until today.

Do you guys get treated like this with your doctors, or is it just me in my situation? Am I being too critical about wanting to know things ahead of time? I realize that I’m not working, but I just might have other plans for the day. Just talked with Teo and he plans on stopping by some day, soon. I’d like to be home when he gets off work, picks up his girls, and then stops by.

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On a lighter note, Nettie continues to amaze me with all the stuff she gets done. But occasionally she can miss a deadline.

Nettie is a “dyed in the wool” quilter, if I can put it like that. She makes quilts for folks. I could probably spend a half hour talking about the quilts she has made for folks. They remind me of the quilts my grandmother, the German married to the Norwegian, used to make.

When we went to visit the grandfolks in the new house my grandfather was building, before they had the insulation up, they used to put me in the northwest corner bedroom. The wind comes from the nor’west so in the wintertime that room was the coldest in the house.

But, grandma had plenty of quilts. I remember having so many quilts on that bed that I had to fold down the corner of each one, slide under all those quilts, and then return each quilt to the proper position one by one, and then pull my arm back under the quilts. They were too heavy for a young kid like me to move all at once.

I slept so comfortably like that, that to this day, I like to have the heat to the bedroom turned off, and will quite often, in the winter, open the window and crawl under my heaviest sleeping bag on the bed. If it weren’t for my insomnia, I’d sleep just like that young boy, so many years ago.

But, to get back to my story about Nettie, I’m posting a picture of her latest creation, a king size quilt meant for her daughter and her husband for Christmas of 2006! I can’t even imagine the work that would go into making something like that. And to do it on her schedule. *shakes head*

So I had to show it off here. See what my friend can do!! And did you notice that no two of the square patterns are duplicated? Each one is unique. WTG, Nettie! You have reason to call it a “masterpiece.”

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I did tell someone "so:" I just don’t remember who.

Being of an enquiring nature, I wonder about a lot of things. I’ve always wondered about stories of cats that were purring when they died, or cats that will climb right up on their human, lie down on the spot that hurts on their human, and then proceed to purr their little hearts out. I’ve always thought that there had to be a reason WHY they purr. And not just because they're happy.

So, some years ago I ran across an article similar to this one that discussed how the exact frequency of a cat’s purr would heal bones faster. My thought was that somebody was going to make money off that little bit of knowledge. I was right, in a manner of speaking.

There is a machine out, the TurboSonic Vibration Therapy machine, that apparently can do for the whole human body what cats can do for themselves.

But the history goes back for several decades. The Russians apparently were doing work on the subject first. Then the Germans built a mechanical machine. Then the South Koreans developed one without the mechanics and a whole lot quieter.

The machine operates within the range of 6 – 45 Hertz, while cats purr between 20 to 150 Hertz. But their main frequencies are 25 and 50 Hertz. BTW, Hertz is a fancy way of saying cycles per second.

With a price tag of over $12K for the TurboSonic, I wonder if a regular vibrator will work. Can somebody measure the frequency and let me know? :-D

Kunolunkwa!



"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Read My Other Post From Today First…

…before you read this one.

I decided to take a long hot bath before bed. Tubs never seem to fit me right. I almost always think of Procrustes when I take a bath. But WTH, I remember taking baths in a square wash tub in the kitchen up until I was 10. Yup; I’m that old. But I was also a lot more limber then.

While soaking and staring at the wall with my feet up on the wall, I noticed the big toe on my right foot doing a little dance number. Just the big toe on the right foot! Now, I don’t know if it was the rumba or the samba, but there it was swaying—OK, more like jerking—back and forth about 1/16th to 1/8th of an inch. And I didn’t even feel it!

That reminded me about pointing out to Nurse Diane today that quite a few small muscles in my body were just a’twitchin’ after hanging a bag of the cancer drugs.

THAT reminded me that I hadn’t had a chance to research the SFX (side effects) of the drugs “which we are about to receive. Amen” So it could have just been the drugs talkin’ earlier.

I had to stop to get my rat poison refilled; they had doubled me up which meant I used it up twice as fast. I’m a big rat. While I was out that way I stopped in at my health food store and “refilled” my IP-6, as well. They gave me a magazine to try and sell me more products. And for me to learn a few things. And I did.

They talked about SAD: seasonal affective disorder. SAD is usually due to a lack of sunlight. And boy, I haven’t been getting’ the sun like I used to. So earlier could be in part due to SAD, as well.

Before I took the swing down, I was out usually several times a day. Even though I try to avoid the sun, I’d usually get a pretty good tan. I realized that I’m so white—how white are you—I’m so white even my AmerIndian and Mexican friends wouldn’t recognize me now.

I ran into a friend from The Sweatshop a few weeks ago and he didn’t recognize me. I thought it was because I didn’t have any hair or a beard. Now, I know why!!!!

Even when working, I’m in and out of the truck getting sun at least on my face and hands all day long. Now, I’m lucky to see the sun. It's still that big bright yellow thing in the sky during the day, right?

And, yes, Amy; I do realize that I would get a lot more sun if I checked into the H. Lee Moffit Cancer Treatment Center. Thank you ahead of time for pointing that out.

So, starting out first thing in the AM, I have three, possibly four, things that I NEED to do to change things. I’ve been way too—what’s the word—“passive?” Yeah, I think passive will do for now. Let the anger motivate you, not consume you!

BTW, I did notice an “I told you so” item of two that I’ll talk about later.

Go to sleep! And sweet dreams!!

Give a Kid a Hammer….

…and the whole world’s a nail!

If you recall from my post yesterday, I was experiencing pain upon eating and was "bringing up" pieces of body tissues. I said that I’d call in today to find out what’s going on, and I did.

Want to know what’s going on?

So, would I. As it is, I went through another, unscheduled, chemotherapy session!

Now, I can understand the nurse not wanting to look at my body parts. She doesn't really need to; they have experts for that. (Although I do wonder about a squeemish nurse. :-) )But the doctor barely looked at the container, much less at the tissue. I explained what was happening and that I thought the sources could be three in order of likelihood: I was actually coughing up lung tissue, I was bringing up bits of my esophageal lining, or I was bringing up bits of the tumor.

“It is ‘probably’ the tumor.”

WTF? “Probably???” Two days of radiation and I’m bringing up bits of tumor already?

As of 2002, I believe it was, doctors were the number three cause of death in the U. S. Ya think?

And with a one in ten chance of surviving this cancer, you would think that the doctor would be a little more conscientious. But there I go thinking again. It means a lot to me; to him, I’m just another source of revenue for the hospital.

So I underwent, with no preparation at all, my sixth round of chemo and added two new cancer drugs to my list; Irinotecan, and Carboplatin, similar to the Cisplatin I was taking.

So I got home about 5:30, checked a few things on the computer, sipped my evening meal (yes, it still hurt and, no, I wasn’t able to take my pain meds before eating ‘cause I’m saving that for when I really assault my stomach with my nighttime meds), and basically stared off into space for over an hour. I didn’t stir until I remembered that I promised Nurse Martha that I’d stop by tomorrow with a copy of my Chocolate Cayenne Truffles. So I printed out two copies; Nurse Kate might want one as well. She likes it hot!

There I go staring again.

I’m reminded of Jean’s memorable line in Billy Jack, “I just don’t know anymore.” Where’s Billy Jack when you need ‘im?

When I set up my monitor with a TV antenna half a year ago, just to have a working TV around, I remembered seeing all the Cancer Treatment Center commercials for the first time. “Before we came to the Cancer Treatment Center, her local doctor gave her 4-6 months to live. That was two years ago!” Maybe there was a reason.

You know what they call the doctor who graduates at the bottom of his medical college class?

Doctor!

In any case, kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

A Cold Sunday

Since Warren’s timely warning that Cloverfield wasn’t playing in town this weekend left us with little to do, I’ve spent most of the day sleeping. BTW, I did note that Cloverfield did very well at the box office. Maybe it’s better that we go next weekend.

And I did figure out why I’m sleeping so much, lately. Several of the meds I’m taking can make one drowsy. Drowsy + not doing much of anything + staying in a warm bed = sleep. “Elementary, my dear Watson!”

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OK, so I called a nurse last night to ask if my stomach pain could be caused by the radiation therapy. A “reality check,” if you will. She said she had no information to suggest that it was. She suggested calling the doctor, which I will do tomorrow.

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Today, after not having had anything solid to eat, just sucking bottles of Ensure, I noticed what appeared to be food particles in my mouth. But, I’ve brushed my teeth and flossed, and it’s been since Friday, or even earlier, that I’ve eaten anything that remotely looks like what I’m finding, my only conclusion is that the particles are part of me.

I wonder if I’ve been coughing up my lungs.

Actually, I’ve experienced this before while undergoing chemotherapy. I would get the mouth sores, and when they started to heal, these chunks would show up. I thought that it was just dead tissue from the sores sloughing off. But, I’m not on chemo, and I don’t have mouth sores. So where are the chunks coming from? My tumor? My esophagus? They do seem to show up after a good cough.

I emptied an allspice spice container, put a couple of cc’s of alcohol in it and started depositing my “samples” in there. I’ll take it with me tomorrow to the VLCC.

Am I too observant?

Geez, I really hope that you aren’t eating when you read this…

~~~~~~~~~

I finished reading Heinlein’s Glory Road today. As I mentioned before, it has been decades unfortunately since I last read this particular book. But I definitely see how he influenced my worldview. That’s not to say that I always agree with him. But he did have considerable influence.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Back On The “Sauce”

Boy, does that have a bunch of meanings. I may need a disambiguation page like Wikipedia.

First, I’m back on the Ensure. It just hurts too much to eat. It even hurts to drink the Ensure—it doesn’t sit right in the stomach, and I checked the expiration date—so I started taking one teaspoon of the hydrocodone/APAP "sauce." That means 2.5mg/167mg. Not much, but I’m hoping that it helps. I don’t want to get back into that other issue! Not that I had a problem; I just don’t want one to develop.

It occurred to me today that lying in bed in a semi-reclining position—I’ve been sleeping most of the day—might not be the best thing for me. Something to do with the geometry of the digestive system, the tumor, and the introduction of food/liquids into the alimentary canal. I mean, if my cancer developed as a result of acid reflux, this is the position I developed it in. How I’m going to change that, other than sitting bolt upright, is beyond me right now. But it does give me something to think about. I don’t have the strength to sit bolt upright comfortably for any length of time. Maybe just upright in the recliner?

I’ll make the proper inquiries/notifications on Monday.

BTW, I’m back on the peppermint tea “sauce,” as well.

I’m finally getting around to getting my laundry done, too. Not that I had a lot. When you lay around all day in your pj’s you don’t need to do too much. But now that I have to go to the VLCC every weekday does mean more clothes to wash.

And some good news, my cough is changing; it’s getting more “moist.” It’s not as dry a cough as before, and it does seem to be lessening somewhat.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

RT, Day 2

I actually felt the beam or whatever it is hit my left side today! Weird! I could have used a pointer and matched the feel of the beam and the feel of the pointer. I bet they would have matched. It didn’t hurt; it was just sensation.

So, I really, really concentrated on the chest and right side treatments, but didn’t feel a thing. Nurse Paula said that they had delivered the exact dose they intended; they had a gauge on me.

I pay attention more than most folks, I guess. Sometimes I can “taste” the dye they use for CT scans. But then, I’m also looking for something. If I weren’t, I wouldn’t have noticed it.

~~~~~~~~

Which brings me to my final hospital bitch.

If you check Figure 4 in the photo essay of a Port Access, you will notice that Diehl Martin mentions a chemical spray they use to numb the skin prior to accessing the port. The hospital doesn’t use it!

That poor port has been accessed countless times by a needle that isn’t exactly a small gauge. It can get tender!

Now, there are stories about how my grandfather, the Norwegian, could roll up his sleeve and stick a knitting needle in his bicep deep enough that it stood straight up.

I’ve sat perfectly still while my mother slit my skin with a razor blade and probed with a needle to remove an old bullet fragment that had worked its way to the surface and was causing some discomfort. Since she doesn’t believe in alcohol except to sterilize things, I didn’t get any anesthesia prior to her surgery. 8- )

I’m no stranger to pain. I’ve been shot, stuck, cut, and sometimes I’ve done it to myself. And there were even a few times when it was on purpose.

But I don’t like to have to endure pain when I don’t have to. And if it is possible to feel a beam of radiation, imagine what a needle feels like!

There, that’s out of my system. Maybe I can let it go….

~~~~~~~~~

Dammit! Amazing Grace just came on the mp3 player. Bagpipes. Damn, damn, damn!

My best friend and hunting buddy, Rawley, died nine years ago, next month. At his request, we played that song at his funeral. That exact recording.

Today wasn’t the day to hear that! When does the pain of loss go away?

~~~~~~~~~

I don’t know if it’s the radiation or just the progression of the disease, but I have to be very careful when I eat. I do have some pain but it isn’t too bad. Yet. ;- )

The gas in my stomach backs solid (and not so solid) food up against the tumor, which then blocks the sphincter, so I can’t expel the gas. The tumor gets compressed and doesn’t like it. I’m waiting for the time when I try to regurgitate the tumor. I can’t say, “regurgitate,” can I? No, it means "to cast up again." It was never “up” in the first place. Whatever the word, I’m waiting for it to try and make an appearance.

BTW, what does fruit have? Fiber? Bulk? I’m finding out that it’s not a good idea to eat much fruit. (As I reach over and snag a grape; the alcohol comes later. Again, kidding, :- ) although I’m wondering if it wouldn’t help with the pain.) Looks like it’s back to the Ensure for a while.

~~~~~~~~~

Ben and I are planning on seeing the movie, Cloverfield, this weekend. I’m looking forward to it. Maybe I’ll pop a movie in the computer and watch one now. Take my mind off my troubles.

Later! Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Radiation Therapy, Day 1

From the title you should gather that today was my first day of radiation therapy, and you’d be right! I’m sure that y’all have had X-rays done. That’s pretty much the procedure. Except in this case, the “head” of the machine does move around me to several different positions to “zap” me.

I got a chance to talk to the nutritionist, Nutritionist Lisa, who is taking the place of Nutritionist Amy who is moving on to greater challenges in the hospital. Looks nothing like N. Amy. I don’t know if I mentioned it, but I ran into another Nutritionist Amy on the hospital-side of things when I was stuck over there for several days last week. You remember. Well, the hospital N. Amy looked a lot like the VLCC N. Amy only with shorter blonde hair.

Now I have chemobrain. My memory can play tricks on me. So, I was confused for a few minutes when the hospital version walked into the room. When I explained my confusion, she said another patient had just told her the same thing!!

Anyway, N. Lisa and I had a great talk about my nutrition. Even though I’m not eating the way that they would like, I’m not losing any weight so whatever I’m doing must be working.

I learned a few things from her and she learned a bunch from me! :-) She didn’t even know about the “polymeal.” What kind of nutritionist doesn’t know about the polymeal? Actually, I’m surprised that Wikipedia even has an article on it.

As an aside, please note that the polymeal article mentions that alcohol reduces clotting! Since that seems to be an issue with me right now, I’m gonna hafta start drinking, again!!!! Since I’m allergic to the red wine mentioned, here come the grapes and Southern Comfort, or the Jose Cuervo, or if I can get a supply of it, the Cubano Anejo!

(It was a joke! Or at least, I think it was a joke. I could be wrong. I have been wrong before, you know!)

BUT, while we were talking nutrition after my radiation treatment, I started to get my “hiccups.” I always thought that they were a SFX (side effect) of one of my chemo drugs. So, since I hadn’t just had chemo, I wondered out loud what could be the problem and answered my own question. I realized very quickly that the “hiccup” was my tumor responding to getting kinda sick today with all the radiation passing through it. Just like it gets sick after all those chemo drugs start to make it sick. Pretty quick, huh? I still got it!

Maybe shortly my tumor won’t be giving me any problems about sharing my stomach with food!! :-D

~~~~~~~~~

I finally, finally, finally got some of my imaging today that I asked for how many months ago and that Dr. P said that he would get for me, when one of my kids was with me as a witness in the office. The files say they were written on 12/14/2007. I got it slightly more than one month later. It took over a month to get to me. You can tell how high I rate, as a customer, on their priority list.

I’m going to have to learn a new software program to do anything with the images, but, Good Gorram, was the initial tumor HUGE!

The other part of my learning curve will be to remember my anatomy! Some of the things I’m seeing aren’t the tumor, but actually things like the heart and the bladder. Yes, I do know which is which. But it’s just strange poring over images of my own insides!

So, Ben and I will work on that over the next couple of days.

~~~~~~~~~

Just to correct my daughter, the anthropologist, but since AmerIndians are more of my specialty than hers, I’d just like to set the record straight.

She mentioned that the T-shirt that she and Ben had gotten for me had four Indian tribes named on it. They weren’t tribes; they were actual Indian names. Geronimo, who was often considered a chief, was in actuality a shaman and medicine man. He was also, probably, the fiercest warrior the Apache has ever produced. His last wish was to return to his homeland, but he died a prisoner of war in Oklahoma, February 17, 1909.

Chappo was also named on the t-shirt. Chappo was a son to Geronimo, while Perico (Spanish for parrot) was brother to Geronimo. Chihuahua, also named, was also a member of their merry band that fought off over 5,000 American troops for over 2 years.

Now you know why those four were mentioned with regard to Homeland Security, and why I like the shirt so very, very much. It even has my blood on it now from that Lovenox needle with the bent tip. Which reminds me, I gotta do some wash!

And, yes, I had to look up the names. My memory isn’t as good as it once was, but I’m just happy to remember that two of the names were associated with Geronimo.

BTW, Geronimo’s youngest son was named Naiche. That name is very close to the Cheyenne word for “thank you” –nia’ish, that plays a part in the movie The Last of the Dog Men. I had briefly considered the Apache spelling as a name for another dog, if I ever got another. My first was a black lab that I named Otsitsi (sounds like the French name, Gigi, O’gigi). I miss her!

Hmmm? Oh, it’s the first Oneida word I ever learned-BEER!

~~~~~~~~~

Before I got home today and found Amy’s post on the blog, I was thinking about something that she had said in a comment a while back.

I have mentioned before that I have noticed a personality change in myself over the course of my disease. Normally, I try to minimize the “visible” changes as much as possible. But today, since I was out for the first time in a while and that’s usually when I notice the difference, I started to wonder if the change is getting noticeable to the folks who know me best, my kids.

So, Ben and Amy, are you starting to notice the change? Any specifics or just a gut feeling? Anybody?

~~~~~~~~~

I did do some shoveling today. More snow blowing than shoveling, but it quickly tuckered me out and started a coughing fit. I feel like I should be doing more, physically, but at the same time, I realize the need to husband my strength. It can create an internal dilemma. Maybe this should have gone in the section above.

I just heard a loud noise, the wind and snow are blowing and my hearing is getting poor, so I got up to investigate. Si, con mi pistola en mi mano! It wasn't time for Ben to be home so I had to check.

But now I’m back at the computer and coughing up a storm. Move, get tired, and cough a lot, or sit around and do nothing but play on the computer?

I have been drinking more fruit juice lately, usually V-8, and tonight when I couldn’t even eat the soup and rice I had for lunch, I ate some melon, pineapple, and grape chunks that I picked up at the store today. It hurt for a while, but did taste pretty good. And the melon pieces they put in those trays don’t usually have much in the way of flavor.

Amy, I also picked up the bruchetta “sauce” that I had seen at Woodman’s when you were here. It must be kinda like a “pico de gallo.” If I can figure out how to eat the bruchetta, maybe the pico de gallo will be next! Italian to Mexican! :-)

I can’t think of anything else right now. There’s still something else to bitch about from my hospital stay, but I can’t think of it right now. Maybe later.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Some thoughts to share....

Thanks Dad and Nettie for the feedback on my question. While I wasn't just talking about your venting on the blog, Dad, I understand that venting in real life serves the same purpose ;-). I know how stubborn you are, and I just don't want you to hesitate to ask for help or express your needs if/when you feel them.

If your insurance will pay for housing if you go to H. Lee Moffitt in Tampa, can I bill your insurance if you stay with ME ;-)!?!? Just think about it, we may be able to get you some income out of this deal, yet ;-).

Ronnie and Cuz (in the pic above with Dad) gave us each a Danish Christmas beer when they were visiting GB. They wanted feedback once we tasted them. Well, Mike and I shared that beer awhile ago, and I've been forgetting to share my thoughts. Now, mind you, I've never been a beer drinker, so my opinion isn't very experienced. I thought it was good, but a bit strong. The aftertaste reminded me a bit of soy sauce ;-). Mike said it was similar to some of the dark ales he's tasted before. It was very interesting, but not being a beer drinker, I wouldn't be chugging them anytime soon ;-).

On that note, I wanted to share a few pics from my trip home. Also, Dad, Cuz and Ronnie - please email me any pics you took while we were all up there. The first pic above is Dad in his winter PJ's, on the phone, with his stocking cap on. I just like the pic, so thought I'd share ;-).

Dad really enjoyed a T-Shirt Ben and I got him, and said he wanted a pic of it on his blog, so I'm FINALLY posting one. Here it is, Dad, enjoy ;-). It says, "HOMELAND SECURITY: [names of four indian tribes]: FREEDOM IS NOT FREE: FIGHTING TERRORISM." You can see the image for yourself. I'm glad you liked it, Dad ;-).

xoxoxo,

Amy

P.S. How did 1st day of radiation go?

"Thinking of You"

I got a card from the hospital today, wishing me comfort, peace, and hope. There were five signatures, three of which were HUCs. I had to look that up ‘cause I didn’t know what a health unit coordinator was. As it was, I didn’t recognize any of the names. It was a nice gesture, but it would have helped had I had contact with the people who signed the card. *sigh*

I was also hoping to learn the name of that nurse on nights! :-)

I started to make good on a promise elsewhere. I started to reread Glory Road by Robert Heinlein. I’m just about halfway through. I’m surprised by how much I’d forgotten although I’m remembering quite a bit. It’s funny what you mind forgets. Now, it’s been decades since I read this, but I can’t see how I ever thought that this book was a “juvenile!”

I had Ben mail some bills for me today. I did get up later and walk across the street so I guess I could have mailed them myself. I’m still moving slow with some pain in the right leg. Maybe another clot?

I still have the cough so it should be interesting tomorrow during radiation. And did I mention that I’m back on soft food? I guess that stomach tumor just doesn’t like to share its living quarters with solid food. So, back to warm soups.

Got an email from my HR person today. She finally took my advice about curamin and she says that it is helping some. I told her that she has to build up a level in her blood before it really becomes effective. I also told her to make sure she’s getting enough magnesium. That’s one “take-away” I’m glad I got from all this clinic stuff.

She also mentioned that her mother-in-law passed away on the ninth. They had told her that she had 4-6 months on the third of this month. At 78, I believe, it looks like she didn’t want to stick around for the fight. I do know the feeling after having been so sick for so long. Pero, yo soy testarudo!! I’m stubborn!! So I have that working for me.

Gonna stop now and try to get more reading in before Ben comes home.

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

MHE 2

When we last left our hero it was going on the night of his first day in the hospital, he was tired having been up since 6:30AM to get to his appointment at VLCC early, so he could get to his PCP’s office at 8:30AM. And we know how that worked out, don’t we?

By this time I had hooked up the computer and was on line via an unsecured WiFi link. Because it was unsecured and the hospital could read everything I wrote, I didn’t visit my blog but contented to play at some other sites. In retrospect, I could have logged my impressions to a Word document for later posting, but that would have required thinking.

It took me so long to get online because the only outlets available were on the bed, and Nurse A. didn’t know if they could be used. She put in a call to the computer area, but they never got back to the customer, I mean the patient, with an answer. The nurse on nights had no issues with using the bed outlets and plugged me right in!

So there I was, trying to sleep and couldn’t! Nothing I tried would let me sleep without chemical intervention. And no chemicals were forthcoming.

Morning came and I was still trying to get some sleep. Nurse Lisa came in to get some blood and needed another nurse to have my port accessed. I told her that I’d been up all night. The night nurse—I wish I could remember her name, she was a cutie—confirmed my story. She told Nurse Lisa that every time she came in to check on me my eyes were open!

Dr. M—the new pulmonary guy, it was his third day there—came in later, talked with me, and said he’d order some Ambien for me for later in the morning. It never came!

So Day 2, Thursday, consisted of getting a chest X-ray looking for the source of my cough.

It was fun talking to the volunteers taking me to the X-ray department. I told them that I was the only member of the world’s smallest minority. That got them interested! So I explained that, as an individual I was the only one exactly like me. Then they laughed when I explained that they too were the only members of the world’s smallest minority of people exactly like them. I had them laughing, nodding, and agreeing with me in short order. It was fun! Made my sleepless day go easier.

Not much else happened that day that I remember. I kept the lights low and tried to sleep, but sleep never came. It was only when I was playing my music down low and attempting to sleep that I noticed that I might, just might, have dozed for a minute or two. Never for very long, I just missed hearing the entire song a couple of times.

Night came and I got my sleeping pill. Blissful sleep! I had them close the door so the hall noise wouldn’t disturb me, but it wasn’t necessary. I slept until they awakened me to do vitals and I went right back to sleep.

I had been awake, or almost so, for 39 hours!!!!!! The nurses were amazed that I was still functioning, and functioning as well as I was! 39 freakin’ hours because they didn’t pay attention to my personal meds.

Did I mention that I didn’t get all of my blood pressure meds? They were driving me nuts, not giving my meds on time, not giving me the meds I would have been taking at home—they gave me Prilosec instead of Protonix, so why do I need the more expensive med at home?—and not giving me my supplements, obviously!

Let me take a moment to describe how they had me trussed up. I had had my port accessed and fluids going in there. I had a large bore IV stuck in my left ante-cubital vein at the elbow joint. They had used it for the CTPA and had just left it there. I had monitoring telemetry leads stuck all over my chest. AND, I had a nasal canula piping oxygen into my nostrils going at two liters a minute! I was all set.

Considering I had heard a Code Blue on third floor ICU and an “intervention” in the room next to me, I was glad they were so worried about me!

Day 3, Friday--I slept in until they came in to take my vitals. Now, I don’t remember if it was this particular AM, but one of the night nurses did my lung sounds. She had me sit up and put the stethoscope to my back. But the first thing I noticed was that she wasn’t listening in the normal areas; she was way outside those. She didn’t have me take any deep breaths. I just sat there waiting for the command to “Take a deep breath” and it never came. She then proceeded to listen to my heart sounds. At least she got those right!

They came in early Friday to do an echocardiogram. I later found out that my heart is in good shape although I do have some very slight leakage from one of the valves. Considering I had at least one blood clot go through my heart, it could be just a chunk that got hung up and will eventually go way. Time will tell.

I had Respiratory Therapy (RT) come in and do a treatment where I breathe a mist deep into my lungs. It’s supposed to open up the passageways, or something. The only thing it did was make me lose control of my fine muscle motor skills. I tried typing into my HP iPAQ and couldn’t even hit the letters. It did make me cough more, as well!

Later Dr M. told me that a cough was a symptom of a PE. So why were they doing RT? Especially since later the RT folks came back with an Advair inhaler and got me started on that. I think that they were trying to sell me everything they could since I was there!

I had asked Ben to bring in a telephone cable since there was a data port on the side of the phone. I could use a dial-up connection to my ISP and be able to access my accounts with considerably more confidence than by using their WiFi setup. Unfortunately, I didn’t have my account info with me so that didn’t happen. Sorry!

Day 4 was Saturday. I slept well again last night with the sleeping meds. They got me ready to go home but forgot to send my Advair inhaler with me. Checking later, it’s not even listed on the list of meds that they had for me at the hospital. They had a new med listed, the cough med that they had me on, but they never put it on the list of Discharge Prescriptions. But I wasn’t feeling well; I had had a “stomach issue” over breakfast similar to my March 16 trip to the ER and it affected my whole day apparently. I had been eating just fine until then. I was even complaining about th elack of taste! But my lack of IP-6 due to being in the hospital might have had something to do with it. Don’t know.

Anyway, I wasn’t mentally up to the challenge of keeping the doctors and nurses in line.

Ben and I stopped on the way home to pick up the one tablet of antibiotic that I needed for the next day, and the sleeping pills that they had me on. I didn’t notice at that time that the cough med wasn’t on the list.

We got home and I laid down for a nap, which I hardly ever do, and surprise, surprise, I slept until 5:00PM

I called back Saturday afternoon to find out about the cough med and was rewarded by a return call from a rather snippy Dr. M. He said that he would send the prescriptions to the pharmacy. Since I needed to update my blood pressure meds, I waited for a while and then went on line to let the pharmacy know about my needed refills. A refill for the Adair was there, but the cough med wasn’t. I waited until Monday and called my PCP.

When I went I today to pick up my meds, I refused the Advair prescription. I also found out that the cough med wasn’t a prescription med. Was that why it wasn’t on the list of Discharge Prescriptions? I have had OTC meds put on a script before. Why was this different? Or was it just one of those things a patient with chemobrain was supposed to know?

I had tried calling my son using the hospital room phone because cell phones don’t work very well in that building. I could never get him or his machine; the phone would just continue to ring. I had tried dialing just one number and listening for a recorded message; nothing. On my last day there, I found out that I had to dial for an outside line to call my son. There had been no instructions when I got there; there was no indication on the phone at all. How the heck was I supposed to know I needed an outside access number to call out?

That’s enough bitching.

Basically, I had three issues. I was anemic. I expected that, that’s what the IP-6 does to deny the cancer cells the necessary iron to live.

I had at least one blood clot that the VLCC hadn’t looked for or caught that needed to be addressed.

And I had a cough, that can be a symptom of the PE or it cold be the result of an infection. Currently it looks like it’s not an infection, letting Mike and Amy off the hook! :-D

Now, I’m just trying to catch up with the rest of my life while sleeping in due to the meds. I have Radiation Therapy backed off until Thursday and I don’t know when my next chemo will start. BTW, I saw ANOTHER oncologist; Dr. P. is on vacation. I did ask him about the Maruyama vaccine. He said that he hadn’t heard about it but that he’d look it up!

Let me know if I missed anything that you wanted to know. And if someone can get me the name of that nurse….

My Hospital Experience

English novelist, playwright, and short story writer, W. Somerset Maugham, wrote something that appealed to me often during my career as a Quality Manager: “It's a funny thing about life; if you refuse to accept anything but the best, you very often get it.” One corollary of that statement would be, “If you accept less-than-the-best, you will quite often get it.”

Thus starts the tale of my recent hospital experience.

Now, it’s hard to keep a timeline straight so don’t hold me to anything. I told you about Amy, my daughter, being home for Christmas, the finding of the swollen bumps near my implanted port, and the subsequent return of Amy and her “monsters” (the dogs) to her home in Tampa. So let’s start again on Wednesday, January 2.

BTW, here’s a photo essay of a port being accessed. The guy looks a lot like me only he has hair! Go with me to a chemotherapy session and that's what you will see them do to me.

I called the VLCC on Wednesday to explain the symptoms I had found, namely the soft “bumps.” Other than the lousy cough, which I attributed to a cold, I experienced no other symptoms. They invited me over for a look and I accepted.

While there, Nurse Practitioner Nancy ordered a sonogram, which revealed a blood clot in an artery leading to my right arm. They started me on Warfarin /Coumadin and Lovenox to thin my blood.

I returned the following Monday for a follow up and blood tests to determine my INR number, which would tell them how well my blood is coagulating, or not. My doctor-of-the-day, Dr. C., asked me why I was wearing a mask. I informed him that I had what I thought was a cold and that I was stingy and didn’t want to give it to anyone else, especially cancer patients with intentionally compromised immune systems. At the same time, I didn’t want to pick up anything else! He made me take the mask off.

I left the clinic that day continuing the Warfarin but not knowing what I would be doing about the Lovenox. Nothing was said about my cough. And I still felt like crap.

A Fatigue Factor (FF) of 10 would mean that I couldn’t get out of bed. An FF of 9 would mean that I could get out of bed long enough to get to the bathroom, the recliner, or the kitchen, but couldn’t stand for very long. I call it “Riding the Recliner” time.

I was somewhere around an FF of 6 or 7. I could get up and around a bit, do the dishes if there weren’t too many, but had to sit down soon. I could go to the store if I used a cart to lean on and didn’t get too many items. A quick in and out!

Tuesday, still feeling fatigued and with the cough, I decided on a reality check. I called my insurance company’s 24-hour healthcare hot line that featured real nurses. It took quite a while to bring Nurse Sheila up to speed with my conditions and how I got there. I informed her about my upcoming appointment with my Personal Care Physician (PCP) in the morning concerning my blood pressure.

She gave me some tips to ease my suffering, but made me promise “cross-my-heart-and-hope-to-live” that I would keep that doctor’s appointment.

I sometimes feel like a victim of Procrustes, who was a Greek robber with a famous bed. If you were too long for the bed, he amputated something so that you fit. If you were too short, you were put on the rack and stretched until you fit. For him, everyone had to be the same height, or else!

One of my favorite Jefferson quotes goes like this, “There is nothing more unequal, than the equal treatment of unequal people.” It would seem to fit with the Procrustes bed situation, and later, you will see, will be appropriate for my situation. And, if you get me drunk enough sometime and ask me, I might tell you how and why that quote appeals to me so much.

I went in early, before 8:00, to the VLCC to have blood drawn to test my blood clotting rate to see if the Warfarin was working. Even though I told them that I had an appointment with my PCP at 8:30 and had to leave by 8:15. they didn't get to me until 8:20!

While waiting, I found out that I had a 9:00 appointment there with the doctor-of-the-day, Dr. C. I told them that they had to tell me about such appointments and that they hadn't told me because if they had, I would have told them that I would be in my own PCP's treatment room at that time.

I walked out of the building at 8:25 at ABCMC. Six minutes later I was one quarteer of the way around Green Bay, slowing down to exit at GV only to find that the exit ramp was glazed over with ice, had been recently salted because two cars were in the ditch with two police vehicles warning other exiting drivers! It took me another 9 minutes to get the rest of the way to my doctor's office. Did I mention that I wasn't feeling well at all???

BTW, I finally got to meet the "Diane" who had cancer and was undergoing treatment as well whom I thought was so young because she kept calling me "Sir." She's not as young as I thought. Her teenage son had just returned from a trip to France with the exchange student they had had living with them! I told her if she ever wanted to talk and compare notes
that she should give me a call.

My PCP took x-rays and found nothing. His exam found nothing; my blood O2 was 100 (they look for 90-100) even though my breathing was rapid and shallow. Except for the fact that I had a nasty cough, and I felt really fatigued, NOTHING! He wanted to put me in the hospital but he had nothing to hang his hat on.

He admitted me anyway.

I drove home, got my son up early, and had him take me to the hospital before he had to head off to work. My fun started while checking in, right in the room.

I’ve told you here about my name issues. I use my first initial and middle name. It’s on my driver’s license, my social security card, and most of my documents. Has been for decades. But it drives Procrustes wanna-bes NUTS! They want a first name and middle initial. And will do anything to get it.

So, when they gave me an armband that said, “Benjamin B” and asked if that was me, I flipped out. I said, “No, that’s my father.” Actually, my father died in 1961, but that was his name, not mine.

So started what seemed like a half hour discussion/argument that didn’t end when I showed my driver’s license and insurance card. I tried to explain that I had been trying for months to get my records and my name changed in their computers to little avail, as evidenced by the conversation I was having. We finally compromised; I put the armband on until they could get another one, while they made copies of my driver’s license and insurance cards.

They still had a problem with what to call me. We must have talked for 15 minutes on that subject alone. It reminded me of that comedy routine, “You can call me Ray, or you can call me Jay…” Did I want my first name to be “H.” or “H. Benjamin” with no middle initial? I finally explained that I had had the same problem with my insurance company and they finally resolved it by calling me H. B. Since that was whom my insurance company felt they were insuring, and subsequently paying the bills for, the hospital could just use the same name. The insurance company would be less confused by H. B. than by anything else. I think the hospital bought it. My bracelet right now says H B.

I’m just barely in the door, feeling really whipped —I’m up to an FF of 7-8 by now—and having to go through all this!

I got dressed for the hospital, my new-from-Christmas pj bottoms and their gown, climbed into bed, and had the bed explained to me. It had all sorts of bells and whistles.

Did I mention that it was a private room? They felt that private rooms were more conducive to recovery for patients. LOL!

While explaining the bed and all the switches on the bed, they mentioned that the electricians had screwed up. The wiring for the reading lights on the wall behind the bed had been run to the overhead florescent light. So the room light switch and the reading light switch both ran to the overhead light. A light so bright I never used it because I hadn’t brought sun block! I’m sure it works well enough for lighting the room during a Code Blue, but not something you want to turn on in the middle of the night just to go to the bathroom.

As a Quality Manager, I kept a quote by the founder of IBM, Tom Watson, close at hand. “If you want to achieve excellence...as of this second, quit doing less-than-excellent stuff.” I knew at that moment why I’ve been having so many problems. Aurora expects less-than-the-best from their people. When mistakes are made, little effort is taken to change them.

My oncologist, Dr. P had told me that he was head of the Quality Committee when I brought up some issues. His point was that they were more interested in “important” things.

Frédéric Bastiat—another person who didn’t use their first name—was a classic liberal (libertarian) theorist, economist, and member of the French Assembly. He proposed a theory called “The Parable of the Broken Window.” I can explain it like this; have you ever noticed an abandoned building with only one broken window? Probably not. As soon as one window is broken and not fixed, people feel free to break the rest of the windows. Fix the first broken window as soon as it’s broken and you keep the rest of the windows intact. Simple!

Another way to put it is exemplified by that old canard, “Take care of the pennies and the dollars will take care of themselves.” In other words, pay attention to the details and there won’t be any big “important” issues to worry about. Apparently Aurora hadn’t heard about it.

Dr. C showed up asking why I was in the hospital! He wanted to know all about my symptoms. My PCP had asked when was the last time I had seen an oncologist and I had told him it was Monday, two days ago. He asked if I had mentioned the cough and I said "Yes, indeedy!"

So, the hospital did a CT Pulmonary Angiogram (CTPA) on me and found that I had ANOTHER blood clot, a pulmonary embolism (PE), in an artery to my lungs! The VLCC had missed a clot. But, they already had me on the proper course of treatment for blood clots, but the cough still had my PCP concerned.

The only symptoms I exhibited for the first blood clot found were the swellings in the area of my port. The only classic symptoms I exhibited for a PE was rapid breathing and a cough. Obviously, those can come from a variety of sources. I've had the rapid shallow breathing during almost every chemotherapy treatment. It was what was causing that cough that still had them concerned.

That was pretty much my first day, unless I remember something later. My first night, though, was something to remember.

They take down a list of meds and OTC supplements that you use when you fist get to the hospital. I usually keep a list in my HP iPAQ, which has amused quite a few nurses and gets me remembered the next time I go in. They wish everyone was as organized as I!

So, they knew I took a sleeping pill before bed. I’ve blogged about it here as well.

WELL! They made NO provisions for me to get sleeping meds of any kind. If I need sleeping pills, due to my chemotherapy-induced insomnia, in the serenity and familiarity of my own home, how much more might I need them in a strange and unfamiliar NOISY hospital?

Attention to detail? I think not.

I’m going to leave you here tonight and get ready for bed. I’ll pick up this tale tomorrow.

Do I still have to remind you "As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Home Again, Home Again...

...jiggety jig!

I'm glad to be home although I'll miss some of the nurses. Most of the nurses! There were some very personable nurses taking care of me, so there was some humor and fun going on. I hope that it wasn't ALL professionalism, but oh well.

I'm not feeling very well even after being in the hospital. I feel more tired today than when I had been up for 39 hours. I couldn't sleep the first night at all.

So I'm going to cut this short for now and try to take a nap. I'll come back later to fill in the details.

My thanks to Amy for jumping in to the breach to keep everyone informed. My thanks to Ben for doing the same and for getting me to and from the hospital while trying to maintain his second shift work schedule. Thanks guys!

A quick note, while talking with Pastoral Care, she observed from my screen saver photo montage and from my conversation about them that "You really love your kids." It kinda slowed the conversation down until I could get my voice back, but I wholeheartedly agreed.

I'm gonna take a nap now!

Dad's hospital stay, day 2.

I stopped by the hospital earlier today. Despite the fact that Dad had been up for nearly thirty hours, he seemed to be in a better mood than he's been in the past several days. His treatment during the stay, it seems, will consist solely of blood thinners and anti-biotics.

I'm not really clear on why he's getting the clots in the first place, but he said that the doctors told him the tumor might be causing them to form somehow. Because of that, he may need to be on blood thinners permanently.

-Ben

Don't Freak Out, but Dad's in the Hospital

Hi all,

I'm writing this to update everyone... Dad was not feeling well at all today, so instead of beginning radiation, they admitted him into the hospital. After running a barrage of tests, they have discovered he has multiple Pulmonary Embolisms (Emboli?) [PE]. These are blood clots in the arteries of the lungs. You can Google the term to find out more. While embolisms are bad, they are obviously the worst without treatment, and he is getting treatment. He said he does not think he is in any danger and should be O.K. He also stated that the mortality rate for UN-treated PE is 26%.

He doesn't know how long they are gonna keep him, but he says it sounds like several days. He's at Aurora Baycare Medical Center, 920-288-8000, room #152. There is wireless internet there, but he said he won't be blogging for a while, so I wanted to update everyone.

I'll keep you posted as best I can,

Amy

I’d Like To Teach The World To Sing...

...in perfect harmony, but I’m too sick to do so.

After having visited the VLCC last Wednesday with a blood clot and Monday for follow up blood tests, you would think that all those doctors, nurses, and nurse practitioners would have noticed that I was sick with a nasty cold. Let’s see, chemically-compromised immune system, one in ten chance of surviving the next five years, you would think that someone would pay attention to the customer, I mean patient.

I hardly got any sleep last night I was coughing so badly. My stomach muscles and the muscles behind my eyeballs hurt this AM from coughing so hard.

So I called a nurse hotline sponsored by my insurance company and talked to Nurse Sheila. Overall, it went well. Found out that she was pretty sympathetic, even after explaining my medical affiliations. You know, Complimentary & Alternative Medicine.

She gave me some non-medical things to do to help my condition, including postponing my Radiation Therapy tomorrow, and Chemotherapy on Friday until my fatigue lessens considerably.

Called the Clinic and the best I could do is get them to think about it. If I go through with therapy, you have my permission to shoot me, or commit me. I have to be at the clinic by 8:00 for lab tests and my GP by 8:30, then back to the Clinic before 1:00 Radiation Therapy.

Amy, your “experienced” oncologist, Dr. C, had to ask me why I was wearing a facemask, yesterday. Then he wanted to know how my blood clot was. WTF? Since they saw it on ultrasound with nothing more than the swelling to alert me that something was going on, HTF should I know?

From my use of those initials, you have to surmise that I’m pretty pissed and discussed changing doctors with my insurance company nurse. I mean five oncologists/ NPs in five courses of chemotherapy?

Later in the day, my temp went to 101.3, so I called the clinic back. I finally got them talked into using up the other three Levaquin. I took one today and fired up the humidifier. I think my congestion is breaking up somewhat. Temp’s up to 101.4 but I’m chilled in a humidified room that’s 70 degrees.

And I haven’t even eaten anything today. No wonder the nurse suggested I call my insurance company to see what kind of outside help I can get.

I talked Dr. C into allowing me to use my Omega 3 Fish Oil. By the time I get done, I’ll be back on all my CAM supplements. :-)

I’m going to end this here. I need to take something in my stomach and a hot bath. And, if you get a call from me, I may need help getting out of the tub. And I may need Ben to drive me in in the morning. I hate to wait until the last minute to find out.

How Government Solved the Health Care Crisis

You won't see me do this very often, post someone else's work. Normally I'd post some quotes and a link, but this was kinda hard to find in my condition. So I posted it here.

How Government Solved the Health Care Crisis
Medical Insurance that Worked — Until Government "Fixed" It
by Roderick T. Long

Today, we are constantly being told, the United States faces a health care crisis. Medical costs are too high, and health insurance is out of reach of the poor. The cause of this crisis is never made very clear, but the cure is obvious to nearly everybody: government must step in to solve the problem.

Eighty years ago, Americans were also told that their nation was facing a health care crisis. Then, however, the complaint was that medical costs were too low, and that health insurance was too accessible. But in that era, too, government stepped forward to solve the problem. And boy, did it solve it!

In the late 19th and early 20th centuries, one of the primary sources of health care and health insurance for the working poor in Britain, Australia, and the United States was the fraternal society. Fraternal societies (called "friendly societies" in Britain and Australia) were voluntary mutual-aid associations. Their descendants survive among us today in the form of the Shriners, Elks, Masons, and similar organizations, but these no longer play the central role in American life they formerly did. As recently as 1920, over one-quarter of all adult Americans were members of fraternal societies. (The figure was still higher in Britain and Australia.) Fraternal societies were particularly popular among blacks and immigrants. (Indeed, Teddy Roosevelt's famous attack on "hyphenated Americans" was motivated in part by hostility to the immigrants' fraternal societies; he and other Progressives sought to "Americanize" immigrants by making them dependent for support on the democratic state, rather than on their own independent ethnic communities.)

The principle behind the fraternal societies was simple. A group of working-class people would form an association (or join a local branch, or "lodge," of an existing association) and pay monthly fees into the association's treasury; individual members would then be able to draw on the pooled resources in time of need. The fraternal societies thus operated as a form of self-help insurance company.

Turn-of-the-century America offered a dizzying array of fraternal societies to choose from. Some catered to a particular ethnic or religious group; others did not. Many offered entertainment and social life to their members, or engaged in community service. Some "fraternal" societies were run entirely by and for women. The kinds of services from which members could choose often varied as well, though the most commonly offered were life insurance, disability insurance, and "lodge practice."

"Lodge practice" refers to an arrangement, reminiscent of today's HMOs, whereby a particular society or lodge would contract with a doctor to provide medical care to its members. The doctor received a regular salary on a retainer basis, rather than charging per item; members would pay a yearly fee and then call on the doctor's services as needed. If medical services were found unsatisfactory, the doctor would be penalized, and the contract might not be renewed. Lodge members reportedly enjoyed the degree of customer control this system afforded them. And the tendency to overuse the physician's services was kept in check by the fraternal society's own "self-policing"; lodge members who wanted to avoid future increases in premiums were motivated to make sure that their fellow members were not abusing the system.

Most remarkable was the low cost at which these medical services were provided. At the turn of the century, the average cost of "lodge practice" to an individual member was between one and two dollars a year. A day's wage would pay for a year's worth of medical care. By contrast, the average cost of medical service on the regular market was between one and two dollars per visit. Yet licensed physicians, particularly those who did not come from "big name" medical schools, competed vigorously for lodge contracts, perhaps because of the security they offered; and this competition continued to keep costs low.

The response of the medical establishment, both in America and in Britain, was one of outrage; the institution of lodge practice was denounced in harsh language and apocalyptic tones. Such low fees, many doctors charged, were bankrupting the medical profession. Moreover, many saw it as a blow to the dignity of the profession that trained physicians should be eagerly bidding for the chance to serve as the hirelings of lower-class tradesmen. It was particularly detestable that such uneducated and socially inferior people should be permitted to set fees for the physicians' services, or to sit in judgment on professionals to determine whether their services had been satisfactory. The government, they demanded, must do something.

And so it did. In Britain, the state put an end to the "evil" of lodge practice by bringing health care under political control. Physicians' fees would now be determined by panels of trained professionals (i.e., the physicians themselves) rather than by ignorant patients. State-financed medical care edged out lodge practice; those who were being forced to pay taxes for "free" health care whether they wanted it or not had little incentive to pay extra for health care through the fraternal societies, rather than using the government care they had already paid for.

In America, it took longer for the nation's health care system to be socialized, so the medical establishment had to achieve its ends more indirectly; but the essential result was the same. Medical societies like the AMA imposed sanctions on doctors who dared to sign lodge practice contracts. This might have been less effective if such medical societies had not had access to government power; but in fact, thanks to governmental grants of privilege, they controlled the medical licensure procedure, thus ensuring that those in their disfavor would be denied the right to practice medicine.

Such licensure laws also offered the medical establishment a less overt way of combating lodge practice. It was during this period that the AMA made the requirements for medical licensure far more strict than they had previously been. Their reason, they claimed, was to raise the quality of medical care. But the result was that the number of physicians fell, competition dwindled, and medical fees rose; the vast pool of physicians bidding for lodge practice contracts had been abolished. As with any market good, artifical restrictions on supply created higher prices — a particular hardship for the working-class members of fraternal societies.
The final death blow to lodge practice was struck by the fraternal societies themselves. The National Fraternal Congress — attempting, like the AMA, to reap the benefits of cartelization — lobbied for laws decreeing a legal minimum on the rates fraternal societies could charge.

Unfortunately for the lobbyists, the lobbying effort was successful; the unintended consequence was that the minimum rates laws made the services of fraternal societies no longer competitive. Thus the National Fraternal Congress' lobbying efforts, rather than creating a formidable mutual-aid cartel, simply destroyed the fraternal societies' market niche — and with it the opportunity for low-cost health care for the working poor.

Why do we have a crisis in health care costs today? Because government "solved" the last one.

Bibliogaphy

David T. Beito. "The 'Lodge Practice Evil' Reconsidered: Medical Care Through Fraternal Societies, 1900-1930." (unpublished)

David T. Beito. "Mutual Aid for Social Welfare: The Case of American Fraternal Societies." Critical Review, Vol. 4, no. 4 (Fall 1990).

David Green. Reinventing Civil Society: The Rediscovery of Welfare Without Politics. Institute of Economic Affairs, London, 1993.

David Green. Working Class Patients and the Medical Establishment: Self-Help in Britain from the Mid-Nineteenth Century to 1948. St. Martin's Press, New York, 1985.

David Green & Lawrence Cromwell. Mutual Aid or Welfare State: Australia's Friendly Societies. Allen & Unwin, Sydney, 1984.

P. Gosden. The Friendly Societies in England, 1815-1875. Manchester University Press, Manchester, 1961.

P. Gosden. Self-Help: Voluntary Associations in the 19th Century. Batsford Press, London, 1973.
Albert Loan. "Institutional Bases of the Spontaneous Order: Surety and Assurance." Humane Studies Review, Vol. 7, no. 1, 1991/92.

Leslie Siddeley. "The Rise and Fall of Fraternal Insurance Organizations." Humane Studies Review, Vol. 7, no. 2, 1992.

S. David Young. The Rule of Experts: Occupational Licensing in America. Cato Institute, Washington, 1987.

This article was published in the Winter 1993-94 issue of Formulations formerly a publication of the Free Nation Foundation, now published by the Libertarian Nation Foundation


And you wonder why Bob LeFevre said, "Government is a disease masquerading as its own cure."

I Know, I Know...

I should post something, but I feel like crap. Don't wanna play with anyone right now. I've been coughing a lot and running a fever, at least for me. At one point I was up to 100.5 but usually I'm around 99. I realize that for you folks that may be normal, but for me, I usually run about two degrees lower than you folks. And they say it's not my thyroid!

Ben raised a concern over my digital thermometer, so I dug out my old-fashioned mercury-filled glass thermometer. They were within 2-3 tenths of a degree. Ain't the thermometer!

I'll be going in tomorrow to consult about my clot. Maybe I can stop giving myself injections with bent needle tips; hurt going in, hurt worse coming out! There was only one like that, but how many do you need to make you needle shy?

It seems that Oscar and I are "Brothers of the Lovenox." That's what he was getting in the hospital only his wife, Deanna, gave him his shots after he got home. He said that Dee gave a better shot than the nurses!!

I've found out about a bunch of stuff that absolutely frosts my cookies, like I might have to be on a proton-pump-inhibitor permanently because they have kept me on a double dose of Protonix for way too long! And here I was worried about liver damage.

Radiation starts Wednesday and another round of Chemo starts Friday. Don't know yet what poisons they'll put in me then. Hopefully, I'll get what little hair I have back.

Saw a friend from The Sweatshop in the store yesterday; he didn't recognize me! But we did get a chance to talk a little which was nice.

OK, that's it for now, I'm gonna vegg out and watch a movie so I won't fall asleep too early. I've found that I can do almost everything from my bed except cook my meals. I brought the computer in and can surf the net or watch HD movies on my laptop. I could bring up my cooler/refrigerator from my OTR days and keep food right here. With all the camp stoves I must have, surely I could cook here in my bedroom, right?

Maybe later. Right now you have to remember that "As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Anybody actually go out and check out the link, or am I just blowing smoke up your skirt? Enquiring minds want to know. :-D