My New Year

I just gave myself my first shot of Lovenox on my own. They had wanted me to come in to observe my technique, but I feel like crap. I wasn’t going to drive feeling the way I do. Do not mix cancer and colds; you won’t like the way you feel. Even Ben commented on my increased cough.

I explained to them that my daughter was a Type 1 diabetic so I had to give her just a few shots over the years. More so earlier than later; they started training her right away at the ripe old age of four to take care of her condition. Would that we could do that with all kids, teach them to take care of themselves. It would be a far, far, better world. I’m posting a picture of her being trained by a nurse to give a doll an injection that appeared in the local paper at the time.

Anyway, they let me stay at home and shoot up by myself.

If you read very many blogs you will notice that they sometimes post the music that they happen to be listening to as they put their words to electrons. I’m going to do that too.

I had to fire up the VCR—remember those—to watch a video about Lovenox and how to give myself a shot. I have very few tapes left; they’ve all been replaced by DVDs. But I had a copy of a television show, Austin City Limits, that I absolutely love. I’ve titled the tape My Girls. Egotistical of me, I know. It’s an Austin City Limits Songwriters Special, originally aired in 1986, over 20 years ago! It features Gail Davies, Roseanne Cash, Emmylou Harris, Lacy J. Dalton, in addition to Mary Anne Kennedy and Pam Rose. An awesome 60 minutes of female writers and vocalists. It’s brought tears to my eyes several times; Roseanne’s My Old Man, almost anything Gail Davies does, Emmylou…. Heck, they’re all good!

I ran out to PBS.org to see if I could find a DVD of the show. Apparently they don’t do that anymore. But I did find out that the two writers Mary Anne Kennedy and Pam Rose had formed a group called Kennedy Rose (not to be confused with Rose Kennedy) and put out a couple albums.

I did happen to find a video of Gail Davies doing her Grandma’s Song from the special while listening to her sing it on my tape! Wanna talk about coincidence? The story behind Gail’s song? Her grandmother, Francis Witten, taught her the song she starts out with, an old folk tune. She then segues into her tribute song about her grandmother. NEAT!

Gail Davies happens to be one of those Christians whose views are reflected in her music, like her song Never Cross That Line. Well worth listening to. Songs that teach values; interesting concept.

It’s time to take wash out of the drier, put more in the washer, and to fix supper. If I can get one shot, two meals, and three loads of wash done today, I’ll consider today a success. The dishes will have to wait.

And as always, 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

Correcting my father ;-):

- They aren't roses, and they're dots SOOO tiny, you have to point them out for them to be visible. They're barely tattoos ;-)!!

- There are tons of folks older than you! I know you may not feel that way right now, which I totally understand, but you're not that old ;-). That's partly why this situation is understandably so hard to deal with.

- To help explain the stats you quoted a bit.... Docs talk in terms of "five year survival rates." They rarely tell people things like "you have ___ years to live," 'cause that was never accurate anyway. So, the surgeon had said that, WITHOUT surgery, there is a 10% chance you'll be alive in 5 years. WITH surgery, there's a 30% chance you'll be alive in 5 years. The next day, your Oncologist clarified those numbers by saying that, because your cancer had metastasized, those rates ARE worse for you. Now, neither one really specified what role the 6 weeks of radiation will play in those numbers.

- Sorry for the brutal honesty, its even hard to write it, but that's what that all means. I admit, even though I KNOW all this stuff intellectually, those stats were the hardest part for me to hear, as a daughter. That, and the fact that the docs insisted on using the word "palliative" instead of "cure" because you are "Stage 4 w/ Metastasis." They will never use the word "cure" for someone Stage 4 or higher, only "remission" if they are completely successful.

- Now, all that being said, the surgeon was the ONLY one who seemed really motivated to get Dad on the table and cut him open. All other docs have said that the surgery is extremely invasive, would not prevent cancer from coming back elsewhere, especially in the lymph nodes where it has already been detected, and would be "life-altering." The purpose of it would be to alleviate symptoms the tumor is causing and to extend Dad's healthy comfortable years. So, the docs, as well as Dad, have expressed the desire to save surgery for an absolute last resort. On a positive note, the surgeon was clear that Dad would NOT be an invalid or incapacitated after the surgery, but his relationship with food and eating would be forever changed. Not too fun.

- So, sorry for being a downer, but having witnessed the Dad-doctor conversations en masse lately, I wanted to catch everyone else up to speed a bit. As hard as it is, its important to be realistic about it all. Now, all that being said, there are no NEW side effects with radiation, so that therapy won't be any WORSE than the chemo so far. Plus, Dad is taking his IP-6 and reports feeling a bit better. There are other "alternative" therapies that may be available. AND, statistics are, by definition, general. There are always those at the extreme ends of the spectrum that defy all odds, anyway ;-).

Sorry I didn't post any of this sooner. It takes a while to process it all. Plus, we were pretty busy when I was up there.

xoxox,

Amy

About Me

OK, things have been hectic in a nice way lately. Today was the first day I got to drive myself in about three weeks. Not that I was always able to drive myself, but it was nice to let someone else drive for a change.

I started Chemo on the 19th and Amy got to share that with me. They pulled the pump Christmas Eve Day; the same day that my sister and her husband showed up. It was certainly was nice to see them again. And they loved the dogs.

I was already set up with a series of consultations, so I was at ABMC every day last week but Christmas Day. Monday I had my pump removed. Wednesday I had a surgical consult. Now, you may think I’m complaining again when I say I got there and they didn’t have a record of my appointment. Well, I guess I am. But I’ve come to expect that from Aurora.

The surgeon was a cardio/thoracic surgeon; as opposed to the “general” surgeon I had seen way back in the beginning. It seems that they work as a team doing surgeries of my type. So it was nice to hear his side of the story.

It seems that for people with my level of esophageal cancer the prognosis isn’t very good. Ten percent for a Grade 4 B patient. Surgery can increase my chances to 30%, according to the doc.

It was nice to have my daughter, Amy, and my sister and brother-in-law there to hear some of this from the horse’s mouth, so to speak. They got to ask questions and satisfy their own curiosity.

Interesting note: Several days later, Amy and I were having lunch with Amy’s friend and her husband at a local Mexican restaurant, when we noticed the surgical doc sitting across the room. We traded waves. Later he came over and said Hi and mentioned that he was from San Antonio so he needed Mexican food often. Seems like a real nice guy.

Thursday, I had my ten-day consult with the oncologist at eight days. He was more of the opinion that surgery may not be necessary with a course of radiation and different chemotherapy. He was going to wait for input from the other docs, but was ‘quarterbacking’ the whole treatment and that was his thoughts. So, it looks like I’ll be doing at least one more course of chemo, but with different drugs. It seems that the body adapts and reacts to the drugs after a while. I complained that I still hadn't received my scans yet and he said that he would see that I got them. Hmmmm, oh, not yet.

Friday I had a Radiation oncology consult. It looks like I will be undergoing six weeks of radiation therapy, if you haven’t figured that out from my schedule. I now have four tattoos! They are very tiny roses, two on my lower chest and upper abdomen and one on each side. These are the targets for the radiation beam so it passes through where they want it to go without hitting anything important. At the same time, four different beams hits the tumors with all the energy, but divides it up for the different paths so they only get ¼ the energy.

And, as I said, this doctor also said that surgery might not be necessary for me after they’ve had their shot at me. I’m waiting to see.

While we were there, I heard the receptionist talking to, I assume, Medical Records to get my name changed in the computer. It must have worked; I'm back to being H.

That was last week. Amy left Tuesday morning so that threw me into a great big spiraling depression. OK, maybe not that bad, but I was sad to see her go. Before she left though--it must have been Sunday night--I was undressing in my room in front of the mirror. Being almost directly under the light, I noticed that I saw the shadow of the bulge of the port. But halfway between the port and the AC joint—that bulge on the upper point of the shoulder—there was another larger bulge. Feeling it, it felt soft, just some swelling. I called the kids to witness and verify my observations. Amy—or was it Ben?—noticed that I had another “bulge” above the collarbone. I thought it curious, but didn’t worry too much about it. I asked a couple of people about it, one a nurse, and nobody gave me any cause to worry.

So, I didn’t think about it at all on Monday. Today, however, while I was changing, I noticed the upper bulge was larger. I thought it was the beginning of a goiter! So I called the VLCC and got an appointment.

I take that back. I asked if they wanted me there at any particular time. They said just come in and they would take care of me. So, I got there about 1:30PM. They didn’t get around to me until 2:30PM or slightly after. They took me in, got some history, looked at my chest and decided an ultrasound exam was in order.

I knew something was up when the technician got up during the exam to go consult with someone. It was later confirmed when she left and brought back two more technicians to check her work. It was finally cast in stone when she told me that I had a small clot in a peripheral artery that was causing the problem.

I went back downstairs to the VLCC to await their input. It seems I will be getting blood thinners: Lovenox shots to the stomach, and Coumadin pills. At first, reading the box, I thought the Lovenox was “Love NOX (otherwise known as Nitrous Oxide).” Isn't NOX the same as "laughing gas?" And. you should be interested to find from where (whence) they derive get the drug. Gross!! And if you look up the Coumadin, you’ll find it’s a rat poison! Really! Would I lie?

BTW, my friend in the hospital over deer season for a blood clot was getting shots to the stomach. I’m curious to know if it was the same stuff.

So, I’ll be giving myself the shots until the blood levels of the blood thinners are up to the proper levels to take care of my clot. Since my daughter is a Type 1 diabetic, I’m no stranger to giving shots. But it’s a little different when you have to give them to yourself. Nurse Margaret—did I mention that I like her professional manner and her empathy?—trained me on giving myself the shot. It’s somewhat different than normal shots because there is an air bubble that they actually want me to inject to block the escape of the drug. Other than that, it’s pretty much straightforward. So, I gave the shot and she said that I did just great. Go figure.

I may try to train Ben to give his old man the shot, too. If things don’t go well, he may need to give me other shots someday. And since Himmy is diabetic, he already gives his cat shots. Can I be any worse? Don't answer that!

The nurses had asked if I was having any pain, specifically in the right arm. I haven’t had that yet. But, as I type this, I am developing a pain in the muscle of the shoulder just up from the soft bulges. I’ll keep an eye on it.

So, that’s the deal for now. If you have any questions, if I haven’t explained everything in an intelligible manner, just let me know. Or Amy can correct me! It’s not as if that hasn’t happened before, that my kids correct me. Sometimes I need it. :-D

Amy Watch 2

“Age does not diminish the extreme disappointment of having a scoop of ice cream fall from the cone.” -Jim Fiebig

The same goes for watching your child, adult as they are, leaving with their “kids” to return to their home far, far, away after staying for almost three weeks. Now I’m depressed.

It was fun having Amy and her “monsters” here, even though I didn’t always feel up to it; I had both kids and their pets with me. It reminded me of happy times when the kids were young. It was the best Christmas present they could have given me followed closely by the big heavy blue bathrobe that withstands even winter’s chill when out letting the “monsters” take care of business before getting into the van for the return trip.

Amy left this morning at 8:00AM to return home. To keep folks apprised about her progress, I’ll do the same with this post that I did for her trip up.

I have this post set for Jan 10, so it will stay under my "sticky" schedule when I add other posts this week since I will be bored with little to do when Ben goes to work!

1/1/08
08:00AM -Amy left! :-(
10:10AM -Crossing over into Illinois! The dogs are "moping and whining."
12:05PM -Passing Kankakee where the kids were born. She's now driving in snow and will have snow down past Effingham. She sends me text messages and asks for mileage and weather reports! I look things up on the Internet and text her answers back. Ain't technology wunnerful?
03:15PM -Passing Effingham, IL. Still snowing.
04:28PM -Sunshine!!!!
06:00PM -Past Paducah, KY. Looking to stop the night in Franklin just south of Nashville.
07:17PM -She made Tennessee!
08:15PM -She just got to the hotel in Franklin. She's beat after12 hours and the dogs are rarin' to go! Hopefully she'll get them calmed down for the night. Anticipating an early start in the AM.

Sweet dreams, all!

1/2/08
08:45AM -Got a text message that says she's in Georgia. Four hours to cross GA and another three to get to Tampa and she's home. I asked when she left, 'cause I was waiting for her text message to wake me up early. She said she left at daybreak, which for Franklin was around 6:58 this AM. Allowing for the time change, that would have been about 6:00AM my time. So, see you back here about 1:00PM!
03:13PM -Just got into Florida. I didn't find out why she took so long. Probably stopped for lunch and to potty the monsters.
05:56PM -Our time, Amy just got home!

Sorry I didn't keep this up-to-date in real time. Had some fun here with the doctors. It seems I have a blood clot. But now that I've given the spoiler, I'll update you in another post.

But Amy is home safe and sound.

Peace on Earth, Goodwill Towards Men

As you might imagine, things have been somewhat hectic here. That might account for the fact that I forgot to take my sleepy-time OTC meds. That’s the only way I can try and maintain a sleep schedule that matches the rest of the humans around me even though my condition predisposes me against that.

So when Maz heard a sound at 2:10AM and alerted the household, as he should, I was up for the rest of the night. I tried to get back to sleep, but the brain was working overtime. So, since I had moved my WiFi-equipped computer into the bedroom with me, I decided to check my email and write down my thoughts to post here. But when I got to my emails, I found something interesting.

I subscribe to a quote service that sends me liberty quotes by guys like Jefferson, Socrates, Adams, Cato, Locke, and Washington. So I was intrigued when I found an email of quotes by a guy named Jesus of Nazareth; I had to read them.

What I found was interesting. And, in my state of mind, I had a surprisingly different take than I had when I first read them years ago.

Let’s take a look at them:

"But I say unto you, Love your enemies, bless them that curse you, do good to them that hate you, and pray for them which despitefully use you, and persecute you." -Holy Bible, Matthew 5:44.

"Blessed are the peacemakers: for they shall be called the children of God." -Holy Bible, Matthew 5:9.

Take a look at that second quote again. Who shall be called “the children of God?” The peacemakers, right? So the folks who aren’t peacemakers, the warmongers, can’t or won’t be called the children of God. With me so far? And all good Christians should want to be called “the children of God,” I should think. So, all good Christians should be peacemakers, right? Loving their enemies, blessing those who curse them, doing good to those that hate them, all that stuff.

So all those good Christians here in the Land of the Free and Home of the Brave should be for Peace on Earth and have Goodwill towards all Men. Right? Am I missing something here?

Then why do we have troops in over 140 countries and are engaged in two war zones? Sounds like all those potential ‘children of God’ aren’t doing their job. So whose children are they then?

Just a thought.

As for why I’m interested, I believe in LIBERTY. It’s a strange thing, liberty. I can’t have it unless I ‘allow’ you to have it. If you have liberty and I have liberty and neither of us try to make the other do something against our rights and will, we will have peace between us. So folks who advocate liberty have a shot at becoming a child of God; those who don’t, don’t.

Just as long as we understand each other.

Feliz Navidad!

Amy’s Stay, Day 7

Updates, huh?

As you might imagine, I have a confluence of things going on all at the same time this time of year.

My chemo is going marginally better than last time. Or, I’m getting use to dealing with it. But I can feel pretty crappy depending on the circumstances. Especially if they want me to do the dishes! :-) And the pump does come off tomorrow.

As for my worsening condition, Amy touched lightly on the issue. My last PET scan was so-o-o-o good that we might have forgot what my doctor had said. He had stated that their hope, their goal, was just to keep things from getting worse than the way I came in during the first few courses of chemo. Which was why my tumor reduction was a “dramatic improvement.” We’re probably just getting back to a normal progression of events I guess you could say. I did get a tentative agreement to use the "cancer strength" product called IP-6. I’ll take the documentation in tomorrow and we’ll see.

As some of you may know, I tend to read and agree with a lot of the stuff Lew Rockwell has on his site, and I have commented on Bill Sardi’s site, Knowledge of Health, before. Besides, I believe that, just like Genesis 1:29 says, “all seed-bearing plants” can be used for food, for the health of our bodies. No matter what someone else may say.

Amy’s friend, Mike, flew in Friday night to visit for the Holiday weekend. He had been on one of those islands in the Caribbean—for work, honest—and had to fly into Green Bay to visit us. Quite the contrast!! He was delayed by fog just getting into GB.

We ran down to Ken and Kris’s today for Christmas dinner. The snow caused us to take quite a while on the trip, both ways. Amy was driving her Florida rental, which was fun. She drove very cautiously! Drove me nuts! But then, I can’t drive all the time, I guess.

Tomorrow Ben has to go in to work early for a few hours, Mike flies out of GB to go home, then I have to get my pump removed, my sister ,Cuz, and Ronny are coming up for a few days, and I might have friends stopping by to say “Feliz Navidad” in the afternoon. So I might not get a chance to stop by and say anything for a while.

So “Feliz Navidad!” And have a safe and Merry Christmas if I don’t talk to you before then.

And remember, this goes back to Genesis 1:29: "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

Amy’s Stay, Day 4

As you might imagine, I’ve been busy and tired. The Dexamethasone (the steroid) has been bugging me, and I think the chemo is hitting a little faster this time.

PET Scan results have shown some regression; the tumor has gotten larger since the last PET Scan. I figured as much because of the problems I have eating the farther I get away from a Round. Or to say it another way, the closer I get to my next Round of chemo I start to have trouble with my stomach. I’ve had my first Ensure in quite a while.

So the hiccups have started again, I seem to get tired a little earlier, and my muscles are starting to fail and it’s only what, Day 2? At least I don’t have any nausea. And although the hiccups are disconcerting, they don’t cause much pain.

Amy, her mom, and Ken have run out to the mall. I’ve begged off pleading being fatigue. And it is true; I do better earlier in the day. So I thought I’d update my schedule and pass on a little info.

If you noticed my schedule there is a couple of consults scheduled for next week. For the first time, maybe because it was a different doctor, they have me scheduled for a Radiation consult. And I have another surgical consult. Por que? No se! The last one wanted to take out my esophagus; maybe they’ll talk about just moving the stomach up a little.

I did get some records finally. I still don’t have the scans to post here, I don’t have the records I paid for, and they still haven’t gotten my name right! How’s that for belly aching? I mentioned that I might get a little more critical when I’m not feeling well due to my chemo and Amy started laughing. I don’t get it! What was that about?

Feliz Navidad!

"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

Amy’s Stay, Day 2

Thought you guys might like a picture of Amy’s monsters.

I was RTR (Riding the Recliner) when I asked Mazeru (Maz) up for a cuddle. Maz it is the one closest to my head. Apparently, Mia got jealous and decided to “hop” up as well. Do you know what it’s like to have 140 pounds of squirming dogs in your lap and on your chest?

I asked Ben to take a picture with my camera. Since he was unfamiliar with my camera, it took him a short time to get it figured out. So I ended up encouraging the dogs to stay just a little longer.

If you notice, the snowman’s hat is empty to keep the dogs from eating the M&M Peanuts that were there. The squirt bottle is close at hand to keep the monsters in line. They respect water! Especially here in cold Wisconsin. Florida dogs, what wimps!!!

The cats have done pretty well. Mousebane has decided that he is the King of the House and decided to exercise his Royal Prerogative. We would cage the dogs and allow the cats a chance at full run of the house. Everyone handled things pretty well, so we decided to leash the dogs and see how things went.

I took a photo—which I’m including—of the general encounter, which went pretty well.

I have a futon sofa that opens into a bed that we opened to allow the dogs to ‘sit’ on. Mia was lying down in the spot that shows right between Mousebane’s ears in the photo, next to the futon. Mousebane eventually snuck up behind the recliner and suddenly jumped into the seat of the recliner from behind. Maz jumped straight up as did Mia and Amy.

What was remarkable was that Mia started attacking Maz, protecting Mousebane!!! Remember that all of this is taking place on top of Amy on the end of their leashes! 140 pounds of mock dogfight, because Mia wasn’t trying to hurt Maz, just prevent him from getting Mousebane.

What was remarkable was that later, Mia defended me against Maz’s playful antics. I have a defender! Mia, as we said before, is a Pit Bull Terrier but just as sweet as they come. BUT, she is a strong-willed bitch that needs attention and direction. Her motto is “Kiss me of kick me, just don’t ignore me.” If you can live with that, she’s a great dog!

So, I need to get off here and get ready for Round 5 Day 1 tomorrow.



Feliz Navidad!



"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

Amy Watch!

Thought I'd just keep everyone who is interested updated on Amy's progress as she makes her way back home. I know that she considers Tampa home now, but as her father, I still consider HERE as home for my kids. For my son, it is.

I'll post this as a "sticky" post for a while. All times are Central Standard Time. This post will be updated until she is home, here.

As of today, Saturday, December 15:

11:00 AM She texted she is crossing into Georgia. That puts here only one hour behind the schedule I provided for her. No, it wasn't set in stone; it was just a ballpark schedule to give her an idea of what to expect timewise. :-)

5:19PM Amy just entered Tennessee!

08:22PM She's a little closer, she just entered Kentucky! That's 42 miles past halfway!!!!!!

09:33PM She stopped for the night in Paducah, KY. That's just across the river from Illinois. Heck, Illinois is almost home! More tomorrow!

Sunday, December 16

07:03AM On the Road Again and she just entered Illinois. Only 574 miles left to go. And Maz has seen deer for probably the first time. He won't shut up! And they HAVE seen snow for the first time.

01:47PM Kankakee! The old home stretch. I used to drive from K3 to GB and vice versa all the time. 4 to 5 hours to go!

02:58PM And she hits downtown Chi-town! Isn't that just south of the border? :-)

03:48PM She's in Wisconsin!! Just about 2 hours now!! We started texting back and forth when I got a cell phone and started driving down to Florida. Ben and I got to share our progress and Amy knew where we were. So it kinda evolved into a ritual. It beats the heck out of not knowing until she shows up at the door, don't 'cha think?

06:20PM She’s “finally found her way HOME!!!” Thanks for watching with me! Now, I’m gonna spend some time with my son and daughter and her doggies!!

Happy Bill of Rights Day

I’ll bet you didn’t know that today, December 15, back in 1791, the Bill of Rights was finally ratified.

“So what,” you say. It’s like this. You probably haven’t heard of this before but there is a preamble to the Bill of Rights that explains why there is a Bill of Rights.

The Preamble to The Bill of Rights

Congress of the United States begun and held at the City of New-York, on Wednesday the fourth of March, one thousand seven hundred and eighty nine.

THE Conventions of a number of the States, having at the time of their adopting the Constitution, expressed a desire, in order to prevent misconstruction or abuse of its powers, that further declaratory and restrictive clauses should be added: And as extending the ground of public confidence in the Government, will best ensure the beneficent ends of its institution.

RESOLVED by the Senate and House of Representatives of the United States of America, in Congress assembled, two thirds of both Houses concurring, that the following Articles be proposed to the Legislatures of the several States, as amendments to the Constitution of the United States, all, or any of which Articles, when ratified by three fourths of the said Legislatures, to be valid to all intents and purposes, as part of the said Constitution; viz.

ARTICLES in addition to, and Amendment of the Constitution of the United States of America, proposed by Congress, and ratified by the Legislatures of the several States, pursuant to the fifth Article of the original Constitution.

Without the promise of a Bill of Rights, “a number of states” wouldn’t have signed the Constitution. Without the Constitution, we wouldn’t have had a basis for government in these here United States. So, they’re kinda important. At least as important as the Declaration of Independence vote on July 2, 1776.

So please forgive me if I get just a little political on the second most important day in American History.

Now, one of my favorite authors, L. Neil Smith, wrote a piece that describes what the Bill of Rights ought to be, instead of what it is considered to be by TPTB (the powers that be). It’s called A Glimmer of Hope. I hope that you follow the link, read it, and reflect on it.

One of the interesting habits the lead character in the book the quotes from the article were taken was to inform people about a right that dates back to the common law of the Magna Carta that’s not found in the Bill of Rights that the Supreme Court decided that you didn't need to know about in 1895. I’m going to post it at the end of every post from now on.

Feliz Navidad!

"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

It Is As I Suspected.

I finally took matters into my own hands. Since I was at the ABMC Hospital for my latest PET scan, I decided to talk to the Medical Records Department. I approached the Front Desk and asked for directions to their office. I was informed that they had no “reception area” and that they would call them for me. So, I talked to a young lady who was very helpful. She told me there was no record of my requests for records. I explained that that was the problem; I had requested my records two months ago.

She got me to start filling out Authorization For Disclosure Of Health Information reports provided by the Front Desk and she came down to help me. Since I was looking for records from three different areas—Hospital, VLCC, and Clinic—I would have to fill out three different forms!

We discussed what it was that I wanted—all my records including CD copies of CT. PET, and X-ray scans—and she stated that she would have the paper copies ready for me after my PET scan today. In all honesty, she did state that the CD records might take a little longer.

I did pick up my records after my PET scan, but there were no CDs included in the package. I’m hoping that they will be forthcoming. But I’m pessimistic about that. A pessimist is someone who is right more often that not, and when he is wrong, it’s usually a pleasant surprise.

I checked my previous posts and I did tell you that I was told that the girl who “takes care of those types of things” would correct my name on Wednesday. Today is Friday. Although my records all have my name correct in the body of the reports, the headers all have me listed as Benjamin H! Even my wrist tag for the procedure today has me listed as Benjamin H. WTF! How hard do I have to hit them to get my name right? Maybe I do need a lawyer. Amy, let’s talk about that when you get here.

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Remember when I said I took a break and my DVD player stopped playing sound? I found out what happened. Describing the situation to Ben when he got home and responding to his questions, I was checking my equipment. Apparently, what happened was while I was out of the room, one of the cats decided to “mark” my receiver/amplifier by rubbing his cheek/jaw on the side of the case. Unfortunately, he happened to hit the knob controlling the input, so the equipment was looking for input from my Auxiliary input channel instead of my Video 1 channel. Duh!

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Going through my records I’m amazed at the difference between what I remember happened and what the doctor reports had happened. Apparently, I have had problems that I never could have reported to the doctor because I have absolutely NO recollection of ever having that particular problem. Ayyyy!

**********

There was a bright spot today. I had the opportunity to stop by the home of una amiga from my days at the Sweatshop. We had lost contact after I left that account and she left that job, so it was nice to talk with her and meet her Significant Other and their beautiful 3-month-old daughter!! She was so cute! The baby, Daniela (I believe that’s how it is spelled.) ‘Course, mom was looking pretty good, too. But I had a good talk with the happy family. The SO seemed like a pretty nice guy, too. We had a great talk.

Did I mention that baby Daniela was so cute! I want one!! Can you believe they wouldn’t let me take her home with me? But, at least I did get a chance to make her laugh. Mom and Dad might have thought me nuts, but I had Daniela laughing! I still got it! :-D And, like any set of proud parents, I got to see a bunch of baby pictures.

I had picked up a little Santa outfit to fit a 3 – 6-month-old baby for Daniela. She is 3 months but a little on the small side, 6 pounds, 6 ounces and 19” at birth. I’m hoping it will fit. But it matched the Santa hat I was wearing. I’m looking forward to seeing pictures of Daniela in her outfit.

They mentioned stopping by before Christmas. I’ll see if they will let me post a picture of Daniela, then.

Feliz Navidad!

Not Much To Tell Today

I’ve been pretty tired today. My muscles are just sore; maybe I’m overdoing it.

But I have been doing paperwork most of the day. But I know I’m better ‘cause I want to get out and do other things as well. So I have rearranged a few things, got the guest bedroom set up, and am going through boxes of old paperwork, and throwing trash away.

I moved a set of shelves back into my office where I have boxes of “stuff” piled so I can sort through them easier. How can one person collect so much junk? Oh, yeah, just don’t throw anything away.

But a lot of it has sentimental value! I still have pictures drawn by my kids when they were little! I don’t want to throw those away!

I guess I take after my grandparents. One of the things I remember about both sets was that they kept everything, even if it was broken. It was possible that a part of the broken item could be used to fix something else, thereby preventing having to spend more money. I guess I feel the same way.

As I said, I’m kinda sore. I should start doing some stretching exercises here at home.

Taking a break this afternoon while consuming a meal, I turned on the DVD player to watch an episode of Dark Angel. Not able to sit still, I paused it while I ran off to DO SOMETHING. When I finally came back I pressed play only no sound came out! Nothing I did seemed to work. I’ll take a look at it when I can think a little better. It’s probably something simple.

But, I have had lots to think about today. Unfortunately, that can be tiring!

There Are NO Small Mistakes…

…there’s only mistakes. The consequences of the mistake may be small or large as the case may be, but a mistake is just a mistake.

As a former Quality Assurance Manager I was interested in the Biblical concept of “sin.” You see, according to folks who know more than I about such things, the word that is used most frequently for sin in the Bible is hamartia, meaning “missing the mark.” So, when Paul wrote in Romans 3:23, “For all have sinned…” what he meant was “For all have missed the mark…” or in the vernacular, “Everybody makes mistakes…” Or another way to say it is not everyone meets the standard.

The way I was raised, everything it seemed was a sin: smoking, drinking alcohol (I know, Jesus drank alcohol in His wine, but we were told He drank grape juice!), playing cards, swimming in the same pool with the opposite sex, and even dancing. (That’s why I never learned to dance. Although I did have offers to teach me, we never seemed to get round to actually teaching me. And if you don’t learn it while you’re young, you never really can get good at it.)

Because of the extreme nature of my upbringing, eventually I had to come to some understanding of the nature of 'missing the mark' for myself. And that’s another topic for another time. But it left me predisposed to pursuing a career where missing the mark was part of the whole raison d’être.

So I hope that you can understand the level of my concern with almost every contact I have with my healthcare support system:

I begged for an appointment due to my severe “gastritis” and was sent home to take Prilosec OTC, delaying the diagnosis of cancer by a month.

I had an EGD with biopsies, only to have the six biopsies disappear, requiring another EGD.

I had a port implanted without consulting me on placement. This is Wisconsin. They must have patients who hunt. And I still consider myself a hunter. The port was placed almost directly under the spot where I would mount a rifle or shotgun, however.

I have appointments scheduled in advance for pump placement but not for pump removal. And appointment times vary from what I am told to what they document.

I had trouble getting my name corrected. I use my first initial and middle name. Their computer system is not set up to use middle names, only middle initials. So when I ask that they change me from Benjamin H. to H. Benjamin I was changed to H. H.! I’ve been going to Aurora since August and I was told today that the girl who takes care of those things will correct it tomorrow. Finally!

In an X-ray report, I was referred to as a 56-year-old FEMALE!

I ordered my records two months ago from both the hospital and the clinic so I could hopefully find out what is going to happen to me. I received a response from a record storage company asking for payment for copying my OLD records from the clinic. Sent a check last month, which was cashed a week later. Still haven’t seen the records. Called them today, and their response was that the records were “linked up wrong.” I should receive them soon. But I still haven’t heard about my records from the clinic.

I called the hospital to see why I hadn’t received my records from them. They have no record of me asking, although I have communicated several times with them about my request.

Is it any wonder that the July 30, 2000 edition of the Journal of American Medical Association ranked doctors as the number three killer of Americans, right behind cancer and heart disease?

Can you see why I’m concerned considering the track record of this facility? These are all ‘mistakes.’ They have either “missed the mark” or their standards are very, very low. It irritates the heck out of me.

Round 4, Day 15

It’s been two weeks since I started Round 4 and so far it’s been the worst round of chemotherapy, yet

Talking with the young lady from my doctor’s office she had mentioned not wanting to live in the recliner. Since I spent from Day 4 to Day 9 in the recliner, I could understand the feeling. Talking yesterday with someone who expressed similar sentiments, I decided to coin a phrase, Riding the Recliner (RTR), to describe that action, or lack thereof.

I don’t know if you noticed but Round 5 is back on. Friday I go in for another PET scan, and the following Wednesday starts Round 5. Yippee. I’m expecting to be RTR over the holidays. Sorry.

I am feeling better, though. The muscles still tire very easily. But all that means is that I am now trying to catch up on all the things that I had to let slide when I was RTR! I mentioned clearing the snow on Friday. Never got around to finishing the job on Saturday, but it wasn’t important.

I did run out to a couple of stores on Saturday. I’m not going to do that again. People in cars usually have trouble driving during the rest of the year. Around Christmas, however, I swear someone piths them and then lets them get into their vehicles and drive. I’ve heard stories—I always thought them Urban Myths—about over-the-road truck drivers who come home from a run and refuse to drive their personal vehicles around town, making the wife do the driving. I’m starting to wish I were married so I can join them.

I didn’t find what I wanted although I did get the opportunity to walk around the mall. If you know how I walk, you’ll know that I was tired when I got done. I spent more time waiting to get around people than I did walking.

OK, I’ll explain, just this once. Back during my college days, I remember walking with a young lady named Anita one evening when she said that she liked walking with me “in the evening.” I asked why she had qualified her statement. She said that by evening I had slowed down enough that she could finally keep up with me with enough effort. I slowed down a bit when out walking with girls after that.

So, like I said, I’ve been trying to catch up on everything that I wasn’t able to get to during my recliner time. I had to get the spare bedroom, Amy’s room, ready. I had stored some stuff in there since she was last here. And I had to try and monster-proof the bed. It’s one of those inflatable beds. Imagine dog toenails on a balloon! We’ll see how it works.

And I’ve been trying to get my office cleaned up. I’ve had papers all over being sorted and the like. And then I always seem to find more paper. It’s hard to sort paperwork when you can’t remember where you are putting that particular type of document. Now I have papers and boxes of stuff.

To top everything else off, I can’t find my brand of tea!!!!! My store, Woodman’s, has a big empty spot on the shelf for a month now where my AriZona Rx Stress tea usually sits in the big gallon bottles. Wal Mart only had the quart bottles. I stopped at Cubs, Festival, and Copps and they don’t even carry it. Anybody sees it on the shelf, let me know, OK?

Round 4, Day 12

Well I suppose I could write some of this down instead of just thinking about it. That’s usually what happens to me. I get lost in the thinking and never get to the doing. And time marches on.

I can brush my teeth with toothpaste again. The tongue has healed enough that it doesn’t burn anymore. It was funny that my “magic mouthwash” burned my tongue before the lidocaine kicked in.

I spent over three hours shoveling the concrete today. Probably half that time was spent sitting, recovering my breath, and letting my muscles gain their strength back. Still more that I want to do tomorrow, but not too much anymore.

I cleaned most of the apron into the street. I cleaned enough that the snowplow drivers can see the curbs at the edge of the driveway but I left the two-foot section in the street. Basically just like what you saw in my first picture the other day.

Buoyed by Julie’s article, I emailed my oncologist with my cold feet concerns. Didn’t hear a thing.

I have been in email contact with my personal physician; at least I send them info. I ran out of one of my blood pressure meds today. I had been given 4 weeks of samples and was supposed to send in my BPs at two weeks. Did that; didn’t hear a thing. So I updated my BPs and sent that in last night, informing them that I would be out of meds today. Didn’t hear a thing all day. Tonight I got one of the office personnel doing a follow up. Seems the doctor wasn’t in today.

But it’s all good; it’s all good! I got a chance to talk with the young lady—she kept calling me Sir—about her trials with chemo. Yup, breast cancer. And she is right, you don’t know until you’ve been there. So, she was asking me my experiences with chemo and sharing her own with me. And she was taking notes!!! Smart girl!

She made a comment about not wanting to live her life in the recliner and I almost kissed her over the phone. That’s what the last week has been for me. She understands!!

And if this is what getting old is like, you can have it. I don’t want it!

Even though I was able to work outside for a while today, when I came in I crashed into the recliner. I was able to get up after a bit and fix store-bought Jambalaya for supper, but I crashed back into the recliner to eat and watch a movie.

Hmmm, oh, Die Hard 2. Yesterday I watched the first one. Tomorrow I might watch Die Hard With a Vengeance. Nice thing about losing your memory; all your old movies are almost like new again. :-)

I haven’t seen the latest, Live Free or Die Hard. So I’m catching up so I’ll be on track when I see the new one. I like the Live Free part. But I find that John is now working for Homeland Security; where’s the Living Free part?

Oh, no! John and Holly got divorced! Bummer! I like that actress’s name, Bonnie Bedelia. I used to work with a Bonnie and that was what I kept calling her. I could never remember her last name! She got used to it. :-D

The problem with my muscles isn’t that they are tight or that I’m building up lactic acid specifically. It’s that all the stuff breaking down in my system due to the poison, I mean the cancer drugs, and needs to get flushed out of my system. Por ejemplo, the Cisplatin—BTW, this drug is a compound of platinum, how expensive do you think that might be at $1455 an ounce?—removes the magnesium from my system. It doesn’t need to; it just does. So I’ve had to increase my intake just to keep up.

So between removing stuff that they don’t need to and killing stuff that then needs to be removed, my poor circulatory system is working overtime. Probably why my heart rate is so fast.

So, that’s it for me. I’m recovering now, just not as fast as before. I’m gonna go play in the tub for a while, and then catch an episode or two of Dark Angel. I’ll check back in before hitting the hay!

Hey! Merry Christmas!

And Today Makes 7

OK, so I have sore muscles, or should I say ‘sorer’ muscles today. As long as I don’t do anything, I’m fine. But when I start to use my muscles, I get all twitchy and shaky and have to almost lay down for it to go away. I don’t even like to sit in my office chair for very long although I can recline there somewhat.

I’m sorry, Nettie, I didn’t see your comment on the 5th, and it didn’t show up in my email like it is supposed to. NP Nancy said that the body remembers the painful process of last time and can’t respond as well this time. Which means, either she lied with the good news/bad news routine or I get to look forward to more fun the next time. Or both.

Although, Saturday Nurse Martha had opined that they hit me hard and then they hit me soft with the chemo. So maybe the next round will be softer.

Speaking of Round 5, it’s off my calendar for now; I have to have another PET Scan. I had the follow up for the scan scheduled before I had the test scheduled. And, I had a Nutritional Consult scheduled without even knowing it. They’re going to put my schedule together and SEND IT TO ME IN THE MAIL!!!!!!! And we all know how much of an effort the City and Federal Governments are committed to for delivering my mail, don’t we?

But I am going to have to train Ben to bring the mail in for me. I’m not going through all the effort of getting dressed and all bundled up just to go out to the mailbox.

SIL Julie sent me an article about cancer patients using the computer to document their symptoms with their doctors.

Having cancer patients report to doctors on their symptoms and side effects
online may improve their care, a new study finds.

Even the sickest cancer patients are willing and capable of reporting their symptoms online, says a team from Memorial Sloan-Kettering Cancer Center in New York City.

"Cancer care has become increasingly complex, causing office visits to become more compressed. This makes it challenging for the clinician to comprehensively assess each patient's symptoms in that brief window of time," study author Dr. Ethan Basch, a medical oncologist, said in a prepared statement.

"Because cancer therapies can be highly toxic, early detection of symptoms and timely treatment is vital. What is exciting to us about online self-reporting is that patients can alert clinicians to crucial symptoms in real time," Basch said.

“Reporting their symptoms may improve their care.” Ya think? “Compressed office visits” is something I have been concerned about. And not being able to remember all the things I wanted to tell him. Especially since I very rarely see a doctor anymore; I get the second string.

Anyway, Julie’s article led me to further research and I found out a few things that might be applicable to my situation. The cancer drugs kill cells in my body. They kill fast growing cells to target the cancer cells, but they also kill other cells in my GI tract. And they kill tumor cells, and brain cells, etc. When a cell dies, the body tries to get rid of the parts of the dead cell that it can’t use. All the poisons and toxins released from that cell get dumped into the blood stream and circulate though the body, affecting everything they come in contact with.

Over Thanksgiving I visited a friend in the hospital because a clot of material, blood or otherwise, got dumped into his bloodstream, made it’s way to his lung and took up residence there. The doctors had to persuade it to “move along.”

So, I’m having all these cells in my body dying and giving up their little carcasses to my bloodstream. And over time all this stuff builds up. Wouldn’t it make sense to undergo some “body cleanse” to help rid the body of these toxins? I could be doing an herbal body cleanse designed to remove the crap. But I forgot, doctors don’t believe in herbs. They'd rather I suffered for their beliefs.

The part that had me worried, though, was the description of the breakdown of the tumor. Yes, some of it might end up leaving via my intestines, but other portions can leave via the blood supply to and from the tumor.

Which makes me wonder about the symptom that I reported to NP Nancy about the sharp pain in my right chest that I had over the course of a couple days. But then I forgot to mention the cold feet that I have been experiencing, even though I’m all bundled up.

A build up of lactic acid in the muscles can produce the muscle symptoms I describe. A build up occurs when there is insufficient flow of blood to the muscles to flush out the byproducts of muscle use. And cold feet occur when there is an insufficient supply of blood to the feet. Sounds like a whole lot of insufficiency going on. But what do I know.

I haven’t had to edit this as much as I’ve had to lately so my brain might be starting to recover, as well. Usually, I make all sorts of mistakes that I have to go back over, try to find, and then to correct. It’s getting easier so I just might have to go back to my inbox and start following up on those.

I started to take a bath earlier but was too tired to do even that. Maybe I can still do that tonight. I am glad that you guys have no idea what I’m talking about when it comes to all this fatigue. I really wouldn’t want you to experience it. It’s not a lot of fun let me tell you.

I’m hoping that I can be ‘near normal’ over the holidays when everyone will be home.

Christmas Schedule

Hello all!

I wanted to give everyone a heads up on my Christmas Schedule. I will leave Tampa very early on 12/15/07, driving with my mutts, to Green Bay. So, hopefully, I'll get there on the 17th. My boyfriend, Mike, will fly in to Green Bay around 8pm on 12/21/07, and leave around 10 am on 12/24/07. While this doesn't provide much time for visiting with him, his schedule is restricted by spending time with his son for the holidays, which I completely understand and respect. He wanted to be able to see my family, too, though, so will come to GB for the only free days he has around the holidays. What a guy ;-).

I'm actually not sure how long I am staying in Green Bay. It will depend on a couple of things, but I will probably begin the drive back around the 27th or the 3rd, depending on how long Ben and Dad can put up with me and my monsters ;-).

Looking forward to seeing everyone!

Amy

Now I Lay Me Down To Sleep...

...If I should die before I wake, I want you guys to sue the City!!

OK, I am feeling better a bit. The problem with that is that I think I can do more. :-D

I went to have my labs done and to follow up with the VLCC. They found that I was low on magnesium again and put a bag in me. Then I went grocery shopping. Between them both, I was plumb tuckered out. So, I made supper about 3:00 and started my Dark Angel series again—I ran out of NCIS—while I ate and rested.

Then I did something foolish.

We had snow here a while back. My roommate went out and shoveled for me, bless his heart. But I didn’t tell him about all the little rules and I was too exhausted to supervise.

You would think that when it snows, the City should clean the streets, curb to curb. They don’t! They get within a half a lane and call it a day.

Well, the Federal Government, in the form of the United States Postal Service, can’t and won’t drive though that half a lane of snow to deliver the mail. What was that about “Neither rain nor snow…?” ‘Course I can’t really blame them. But what does the USPS do? Do they call the City and tell them that they can’t get close enough to the mailbox to complete their appointed rounds?

NO!!!!!

They reach or walk across the snow and put a little card in the mailbox explaining how they’d like the property owner or renter to shovel the frickin’ STREET!!! I wish I had my scanner hooked up. You'd like the little diagram. The card explains how they're not permitted to exit the vehicle to deliver mail.

OK, my roommate did call and say that he’d blow out in front of the mailbox when he got home from work. But he works second shift and it’s already cold out there. It’s supposed to get down to 6 bone chilling degrees tonight.

And all I was going to do was run the snow blower to clear away in front of the mailbox so the mailman could deliver my bills and their junk mail. I should be able to hang on and remain standing and let the blower do the work, right?

It was more than I bargained for! The snow was packed hard. I had to break up the snow with a shovel. You can see that in the first photo. So there I am fighting a bucking blower mere inches, literally, from oncoming traffic,

If you look at the photos you will see wet road inches from the snow bank. That’s where the car's tires were rolling when I wasn’t right at the edge of the snow. And remember, my blower is 24” wide: two FEET! From the photos you’ll see that means I had four feet of roadway to clear! In the last photo you can see where the concrete curb and gutter ends and the asphalt roadway begins.

I thought that government was supposed to take care of us, not the other way around. It’s pretty bad when a 56-year-old cancer patient on chemotherapy has to do the work for the City.

That’s it for me. I’m going to bed. I know it’s early but darn it, I am really worn out!

Talk quietly amongst yourselves.

Bad Day 4

But not as bad as the last three! I’ve been up and down a lot more today than the last three days. That has to mean that I’m getting better, or getting used to it. :-) But I’m still not ready to do much of anything but vegetate. And I just realized that I have a headache. When you try to block it all out, sometimes it works. Now that I’m thinking about it, it rears its ugly head. Gah!!

I still have the muscle weakness although the shakes have decreased somewhat. My complete alimentary tract has been affected. The mucosa of the mouth has changed character almost overnight. The two “white-covered” sores have shed their cover and are now red, and hurt with the introduction of food. Actually, I consider that good. However, the back of my throat had turned a mottled red and could presage more sores. And, any acid in the mouth now causes pain, as does hot items. So the peppermint tea that I’m trying to drink has to cool a lot more!

The lower GI tract still continues to give problems—not often enough to be a big problem, just an annoying one—that requires the use of the Lonox/Lomotil. Remind me to buy stock in Big Pharm, will you?

My temperature has been consistently at least one degree lower than your “normal” over the last few days. However, the last few hours my temp has proceeded to climb, taking me to your “normal” and surpassing that slightly. That would explain why I have started to sweat, but my feet are still freezing. Go figure!

Since an elevated temp is necessary to get any action from the doctors in the way of any intervention, we’ll have to see what tonight and tomorrow brings.

I’m using bigger words and getting verbose; that means my mind is coming back somewhat as well. Not enough to even bring to mind the things that I wanted to accomplish today, until now, however. Darn! Remind me to use my pocket PC for a To-Do list, will you?

Because it takes me quite a while to marshal my thoughts sometimes, I put together a series of items I want to say in a draft and add to it as I think of things. I was doing that two weekends ago for an email that I haven’t gotten around to yet (SORRY) when I ran across a quote by Mark Twain. Now, I have an online friend who likes to quote Twain, so I have a tendency to pay attention when I read Twain. And it was one that I wanted to use in that email, but I’m going to use it here.

I am aware that when even the brightest mind in our world has been trained up from childhood in a superstition of any kind, it will never be possible for that mind, in its maturity, to examine sincerely, dispassionately, and conscientiously any evidence or any circumstance which shall seem to cast a doubt upon the validity of that superstition.

Now, Will Rogers is credited with putting it another way, "It's not what we don't know that hurts, it's what we do know that ain't so." I’ve always tried to break out of my “superstitions” and look at things as objectively as possible, although there are some who will disagree with me.

BTW, I say ‘credited’ with the quote, because I have read some disagreement about the source. It doesn’t mean that he didn’t say it, though.

One of the signer’s of that treasonous, anti-government document, the Declaration of Independence, Dr. Benjamin Rush (a medical doctor) is “credited” with having warned us against our current situation over two hundred years ago:

Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship to restrict the art of healing to one class of men and deny equal privileges to others: The Constitution of this Republic should make a special privilege for medical freedom as well as religious freedom.

Bad Day 3

Just an update on me, today is as bad as yesterday. So I’ve spent the last 3 days in the recliner. My temperature is below normal, so it wouldn’t appear that I am “sick” although I do have a cough. And I’m down about 10 pounds, 184 this AM. Oh, well.

I did get dressed and went out to get the snow blower started. I tried to tell Ben how to do it from memory, but we know how that works, don’t we? I needed to see the unit. I was pleasantly surprised that my efforts last spring made starting it pretty easy this time. As it was, Ben spent an awful lot of time out there doing what I’ve always done for myself. Do you know how frustrating that was for me?

But I’m still having trouble moving around. My muscles once they get started just keep shaking, especially the thigh muscles. Don’t know why, but I may call a nurse or something tomorrow.

Tonight, I’m going to take a hot bath and hit the sack.

PS: There are folks who are coming to visit during the holidays and they'd like to make plans to see who they can see when they are here. If'n you're going to be headig this way, to see me or the family, let me know so I can pass the info on: who, when, etc. Today, Amy said she should be showing up before Round 5 starts. I'm looking forward to it.