Random Thoughts

And that’s about all they can be, random. Oh, I’ll try to put them into some cohesive framework, but don’t expect much more than that.

I started to write about a subject that has been bothering me, but can’t seem to put the effort into making sense out of what I want to say. So this may truly become random.

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Got dressed yesterday, anticipating a trip back to the VLCC—Amy was right; I anticipated this round would go easier. From what I now hear, they get worse—and I needed to deposit a couple of checks. Anyway, I decided to take a little stroll out of doors to the Men’s Mall since I was dressed, I need the exercise. And my cheerleaders suggested it.

Due to oncoming traffic while crossing the street, I tried to break into a run, or at least a jog. And “break” is the appropriate word; I nearly fell flat on my face. Just like when I climbed the stairs at Teo’s place. I’m losing control of my muscles. Does that come under the heading of Peripheral neuropathy? “Gait abnormalities.” I guess it does.

I can see why I might be disabled, even if I survive the chemo.

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I like logic puzzles. They exercise my brain! Sudoku is my most favorite puzzle at present. My son got me a program for my HP iPAQ, my handheld “pocket computer” I purchased to keep all my notes and info in one place. Today’s Raising Duncan illustrated my point “poifectly!” And, since I was working with Hispanics, Spanish-speaking people, I got a Spanish/English dictionary on a memory card for my iPAQ as well. I like to be able to communicate, and I don’t mind learning a few words doing that.

When the ass’t manager at the SweatShop found out that I liked Sudoku, he made it a point to give me copies of the Sudoku books that came in for destruction. Now, these books were to be destroyed FOR A REASON! Not all the puzzles were solvable!!

I put these books on a shelf in a bookcase in my bathroom. When I have a few minutes to spare in the bathroom(!), I open to an easy puzzle and have at ‘er. I usually can solve one in less than ten minutes. Some take more time.

When I do have a problem with a particular puzzle, I can input the “paper puzzle” into my pocket PC (PPC) program, and it can tell me if it is solvable or not. Then, if it is, I can solve it in my PPC. I can switch from the number format to colored tiles, and back again. The colored tiles really let you see spatial relationships better than the numbers do.

So, I can determine if my inability to solve a particular puzzle is a fault of the publisher or my inability to solve the logic. I can also check the answers in the book to see if they even match the current puzzle. Ask Amy, she can tell you all this.

Recently I started coming up with puzzles, easy puzzles, I couldn’t seem to solve. Not only couldn’t I solve them; I was making mistakes doing so.

Did you notice that last statement? It’s very important. I RARELY make mistakes in Sudoku! Not related to logic, anyway.

I recently tried the ‘hint’ feature on my program and found that there are times in these games when logic won’t help; one needs to guess. I expect to guess wrong. I don’t expect to make mistakes in logic.

So, when I found that I was, I knew that my brain is being affected as well.

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I hadn’t wanted to get too involved in politics with this blog. But it’s kind of hard not to when the government is involved so much in our lives. The treatment I am currently undergoing is a federally-approved course of treatment. I can’t opt for something they didn’t approve. I can’t use substances that they don’t approve of.

As Ronny pointed out, he has to get special paperwork for his pain meds to get them into the States. And, he can’t bring enough to get him trough a three-week stay. That means he’ll have to bring a prescription with him, or maybe have to see a doctor here, and buy American Pharmaceuticals. Not those crappy European ones.

I always wanted to live long enough to be able to tell you “I told you so.” I think I’ve lived long enough.

So, I feel like George Washington, being bled by his doctors for a horseback riding accident, losing 4 POUNDS of blood, only to die from a throat infection.

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Speaking of which, that’s another of my many SFX (side effects) to manifest itself this go round, Candidiasis. You may have called it “thrush” when your kids had it. It’s a fungal sore that manifests itself in the throat, and for some of us, in the intestines, causing all sorts of fun.

My “magic mouthwash” is supposed to help. I had thought it was just for the pain, but I’m told NOW that it will help to actually kill the yeasty beasties. Again, information that gets to me late.

I found that these beasties can only grow in alkaline environments. So I’m attacking on another front. I have intentionally started eating and drinking acidic items. Yes, it does hurt, but it is food!

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Speaking of pain, I have cut way back on my pain meds. When I switched to the current med, it really didn’t do much for me. I thought it was an issue of building up in my system. And then my doc left on a family emergency, or that’s what they told me, so I didn’t worry about it. It didn’t hurt all that much. The joint pain went away when I started supplementing with magnesium, so there really wasn’t anything much to worry about.

Having gone several times without my pain med ‘cause I forgot it, without an increase in pain, my thought was “Why bother.” Either I was given a placebo, or it, like acetaminophen, doesn’t do much for me at such a low dose. So now I take it only twice a day. I could give it up altogether, I suppose, but habits are hard to break.

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Himmy was observed for the first time on the window shelf yesterday. If I had more ambition, I’d post a picture of the situation. But I’d like to get this posted today, get to the credit union, and get back before I crash.

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Jim Z, a co-worker that Teo knows, stopped by to see how I was doing. Jim’s been through something similar. He had colon cancer years ago and had one of my drugs used on him, the 5-FU. I guess the 5 stands for the number of days it’s administered, because I get it by pump, 1.6 mls per hour over five days. Jim had it administered one big shot, once a day, for five days.

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Yes, as Amy intimated, I do check the blog throughout the day. I’ll get back to respond to the comments later today. In periods of lucidity, over the course of several days, I researched and installed a program to monitor who visits my blog. Its’ over there on the left, under the Esophageal Cancer Ribbon, and is called, appropriately enough, SiteMeter.

So now if you say you visit every day, I can tell. :-D

It is interesting however. I’ve had visitors from Barcelona, Spain and from Chile. Once I can think again, I may be able to tell why they happened to hit upon my blog. What info were they looking for?

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I’d better get going. I had a big breakfast, (182 pounds this AM) a whole bunch of OJ, and my Mexican hot chocolate. So, my appetite may be coming back. The juice tasted better today than when I purchased it on Thursday, so my taste may be coming back. I may be on my way to recovering from round 3.

But, I’m still exhausted, and in a foul mood. I’ll try not to let it out TOO much.

Thanks for playing this round of Wouldn't Be Dead For Dollars!

Quick Update

Hi all,

Well, I got worried 'cause I didn't read any posts from Dad since Monday, and I texted him earlier today, with no response, so I called him. He answered, just fine. Well, he's not fine, but he answered. He was watching a movie and cuddling with Ben's cat. Well, cuddling alternating with defending his ice cream from the cat.

He's feeling pretty crappy. As he put it, he's "doing as well as can be expected," for a 3rd round of chemo. He's feeling very tired, run-down, and kinda bummed out, so I said I'd post on the blog today, in case anyone else was getting worried. I tried to remind him that NO ONE ever has an easy time with chemo, the point of chemo is to KILL fast-growing cells, so of course he's feeling miserable. But, as many of us know, he's kinda stubborn ;-), and he's kinda mad at his body for not having an easier time of it this go-round. He was hoping that, since the 2nd round wasn't as bad as the first, that this round would be even easier. Alas, that is not the case, and he is understandably disappointed.

So, he's just feeling pretty crappy, all around, and hasn't felt up to posting. But, knowing him, I'm sure he's still sneaking peeks to see who's commenting and whether or not I'm posting (ha, I am ;-)!), so please do continue to send your well-wishes and positive thoughts his way...

More soon,

Amy

Ever After

Just a couple of numbers whilst I still remember them: I was 197 pounds Saturday morning, 190 pounds Sunday morning, and 184 pounds this morning. How’d you like to lose weight like that? All you have to do is be up every two hours or so.

Personally, I’d prefer to sleep, but….

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I was getting the garbage ready to go out in the morning (Ben, I remembered the stuff from the basement), Mousebane was on the window ledge watching me when he took a swipe at me with his paw. Caught me in the ear. Now, I don’t think that he drew blood, but it is somewhat strange the way he’s been acting lately. Must be the change for him. (No, not THAT change, I meant the living arrangements.)

I sometimes eat an ice cream cone in the evening to take my meds with. The other day he tried to take the cone away from me while I was sitting in the recliner. I didn’t have anywhere to go so I ended up holding it away from him. But it was still curious that he got “assertive” (?) about food.

Now, I’m not angry, just curious. Any cat whisperers out there who can explain this recent behavior?

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I showed Ben my mouth sores last night. (He puts up with so much from me...) They ain’t purty, but they’re not hurting much this time, either. It’s not like I NEED my magic mouthwash. It just illustrates that I’m not out of the woods yet. Cells in me are still dying.

I had the pump removed today and got my WBC-building shot, so I should start feeling better. I hope that I’m not being premature, but I think I’m already bouncing back from this last bout with chemo. At least, I spent the evening in the recliner watching a movie, getting up when necessary, and not d-r-a-g-g-i-n-g my butt around when I got up. It’s a SIGN I'm telling ya!

I think that I’m going to bed soon, and see how long I can sleep tonight. I’ll pass on the midnight meds and see if I can get through night without pain. The tumor is shrinking, right. Should be less pain. Hopefully.

I also talked to the ABCMC medical records today. I already have a request in for my records, but since I found out that I can get my PET scans on CD, I’ve been wanting to post them for you. They said, maybe next week….

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Robin, it turns out that I have seen Ever After before. I remembered the opening scene with her father, but hardly anything else. There were a few scenes that I knew that I’d seen before, but with my memory, I haven’t the foggiest as to when, or with whom, for that matter.

I’m sorry to say that it wasn’t one of Drew’s better pictures, I thought. But it was far enough away from the fairy tale that most of it came as a surprise. Not much logic to it.

A couple of favorite quotes, when Danielle (Drew) says to the ESM (evil step mom) that all she wanted was to be loved, and ESM says, “But how can one love a pebble in one’s shoe?” OK, it wasn’t a “favorite,” but at least memorable. I’d have felt the pain.

My favorite was when Danielle asked that her ESM and her ESS (evil step sister) receive the same consideration that they had shown her. I’ve had this thing about the Golden Rule lately.

I liked seeing the chateaus and the French countryside. I was also pleased to recognize Loreena McKennitt’s Mummer’s Dance in the movie trailer. Different culture, but, hey, they’re all European, right?

That’s it; I’m off to bed. Hopefully I’ll feel enough better that I can get a few things done tomorrow.

“Purple Haze was in my brain…”

"…lately things don't seem the same,
actin' funny but I don't know why
'scuse me while I kiss the sky."

But you see, there’s the difference, I DO know why.

I’d like very much for you to understand what I’m about to say. So I’d like for you to go to this article, Lost in cancer's fog, and read it first. Listen to the patients, notice the symptoms they describe, and then reflect on my recent past. Notice anything, anything at all?

This is what I’m going through, to some extent, right now. They call it “chemobrain.” Quite possibly it’s a reaction to killing brain cells along with cancer cells.

But I’ve been here before. I went through all this before. I thought I was over it.

When in my 30's and 40’s, I complained to my doctors that I was losing my concentration, my ability to think, to remember. Most of the time, I was just ignored. When I persisted with my complaint the doctors pooh-poohed my concerns on the matter. “Aw, you’re just getting older, memory is starting to go. You know how it is.”

I’d been losing my ability to concentrate and to remember for quite a few years, but like the article characterizes chemobrain, "It's subtle," she said. "We are not talking about dementia or anything grossly obvious."

It came to a head when I moved to Green Bay ten years ago. Thankfully, I had a son who got me started on the Internet so I could do the limited research that I have. I’d never have been able to do the research I did through a library.

As I tried to work through all this, without the help of the Conventional Medicine practitioners, I learned more and more. Trying to keep it in my head was the problem. Eventually, I convinced myself what the real issue was, and took steps to relive the symptoms, and the problem.

And I succeeded, or so I thought. Things were getting better. I didn’t need to make notes to remember things. I’d gotten off the meds I talked the doctors into giving me to increase my concentration.

But the reason for my memory issues could have also caused my cancer as well. And it could also be part of the reason for chemobrain. But more on that later.

What I’d like you to do is to review the symptoms described in that article and to think back over the last ten years or so and your relationship with me. Notice anything?

One thing the article doesn’t mention is the mood changes. I don’t know if they are there and just not being mentioned, or if, with chemobrain, they are actually non-existent. But with the neurological issues I faced earlier, they played a big part of what was going on with me.

You just didn’t know. How could I explain something I didn’t understand, something that CM doctors wouldn’t talk about?

So, in a long-winded kind of way, I guess I’m apologizing for all those years of my not living up to your expectations. It wasn’t personal; there was an underlying cause. One that I’m having to live through again.