Friday, October 12, 2007

Test Post from Amy

Hey all,

Well, Dad wanted Ben and I to be able to post on his blog, to keep folks updated if/when he's in the hospital for surgery and unable to post. So, here's my first attempt....
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Some folks were curious as to my impressions of Dad while I was home. Well, its hard to analyze him objectively, since he is my Dad ;-), but I'll try. After the initial adjustment to his not having a beard anymore (DAD- you should post a new pic!), the main thing I noticed was him being very tired. But, on Chemo, that is to be expected. He is also now much thinner than I've ever seen him before, but I was expecting that. I am very glad he's on better pain meds, because the other stuff was obviously such a headache for him. Also, Ben (my brother) reminded me that I was there "at the worst" in terms of the chemo, and that, when he's not on chemo, he is quite "normal" ;-). I know that to be true, as well, from his posts and stuff. I went during "the worst" on purpose, so that was kind of expected as well. I admit I was a bit surprised by how loving and cuddly he is being with Ben's cats ;-)!! But, I know that's a good thing, too. Now, we just have to wait until after the PET scan on the 19th to learn what the plan is in terms of surgery.
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It was very nice to be home and to see everybody. And thanks again to Dad (and now Ben as well) for letting me shack up at his/their place.
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Let me know if there are any problems with this post, OK?

xoxoxo,

Amy

Thursday, October 11, 2007

Now I’m female?

Maybe you can explain it to me. These are the folks that are making decisions concerning my life. They write the reports, they read the reports, they make their decisions based on their reports.

My latest test results, a lower back x-ray, came back stating that I’m female! Are my hips really that wide?

Amy, we may have found that “disorder” we spoke of. Unfortunately, no one thought to tell me about it; I might actually have made a decision or two based on the information.

And another thing, when I went in to have my pump removed, I found that, unbeknownst to me, I had an appointment for the next day. I had to enquire as to the nature of the appointment, and no one seemed to know. They believed it was to give me a shot that they had given to me the same day they removed the pump the last time.

Now, I realize that I may not be feeling my best, and my new pain meds can cause “emotional mood disorders,” but help me out here. Am I to understand that I am supposed to meet Aurora’s schedule based on their whim? That I am not supposed to have scheduling problems; that I’m supposed to make myself available any time they schedule me? Even at the last minute?

This is customer service? I’m confused. Help me out here.

Catching Up

It has been nice catching up with Amy, hearing about what’s up with her, and discussing issues about me. (It’s all about me, don’tcha’ know!) So we took up a bunch of time that I would have spent writing to you talking to her. Don’t hate her for it, OK?

AND, this round of chemo has taken its toll on me as well. My weight has gone from 197 on Thursday after the start of chemo to 174, a new low, this morning. But, with the edema and diuretics, it was expected.

Amy left Tuesday night and I went home and slept from 6PM to midnight, got a chance to talk to Ben for a couple of hours, slept again until 7AM, was up for less than 2 hours, and slept again until noon. Call it 14 hours of sleep.

While I was up and about, I started to feel lousy. Then the diarrhea kicked in. So, between that and the shakes, I figured that I might have to go back in to the VLCC.

Have I bragged on my kids lately? I didn’t mean to forget, so I’d like to take this opportunity to rectify the situation.

Ben, seeing how I looked, (this has to be hard on him, BTW) called into work, letting them know that he wouldn’t be in so he could take care of me if necessary. I didn’t ask; he just did it! I felt bad that he took off work, but I was glad that he did so. I do love my kids!

So, I called the VLCC and waited for over a half hour for a call back. I described what was going on and received some advice, with instructions to call back when and if things changed for the worse.

Here’s the fun part. Remember the issue I had with my diarrhea meds that I described in Late, but Still Today? I was given very specific verbal instructions on how to take the meds. When I received the meds, however, the written instructions were different. I started taking the meds that night, but called the VLCC the next day to clarify dosing instructions. Then I was told to follow the verbal instructions.

NOW, I’m being told to follow the label directions, not the very specific verbal instructions I had been given. Is that any way to run a clinic?

So, I took anti-diarrhea meds and crashed. Ben ran out and got a few things he needed including the first season of a TV series that he has had opportunity to catch. We watched the first four episodes.

Between the meds, the rest, and everything, by evening, I was feeling better. I ran off to bed about 10PM only to find that I couldn’t sleep most of the night. The same thing was happening the last time I had problems with diarrhea, so I’m guessing one S-FX (side effect) of that particular med is insomnia.

Anyway, I’m getting tired right now, so I think I’ll post this and try to take a nap. Maybe later….

“I Love It…

…when a plan comes together.” While never a fan of “The A-Team” that quote stuck in my mind earlier this past week.

I know, I missed several days of posting. And I hated to make good news wait. But I’m going to try to catch up here. So, if the tenses are a little wrong, please realize that I’m trying to edit this previously written post on the fly.

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During my last course of chemotherapy, I had had problems with keeping track of my liquid pain meds, so I asked the Cheerleading Squad for suggestions. The suggestions got sidetracked when I switched to the pill form of the medication, but the suggestions stayed in my mind.

My September 30 post, showed my new pill box that I obtained to handle the need to administer different meds at different times during the day. It was purchased large enough to handle the suggestions of using colored balls, or even M&Ms, to indicate my liquid meds.

With my oncologist’s flabbergasting decision to remove me from the Vicodin when I was concerned about the high, almost toxic, levels of acetaminophen and to substitute Aspirin as my pain meds, I had to start making some independent choices.

First, I went looking for an appointment with my Primary Care Physician.

Second, I made an effort to reduce the level of acetaminophen going into my system while maintaining the same level of hydrocodone by switching back to the elixir, the liquid form of my meds, for my two overnight doses.

So, out came the M&Ms again. I had made a “big bag” purchase of M&Ms from Wal Mart, 45 ozs for just under $7, to replenish my supply.

I took my 10:00PM dose the first night as liquid and set up the M&Ms for my 2:00AM dose. Amy and I stayed up until after 12:00AM talking, so I finally got to sleep by about 12:30AM. So, I was understandably tired when my alarm went off for my next dose. I remember the confusion I had when I opened the case and saw the brown and orange M&Ms. Then it came back to me. So, I took my liquid meds, and found that disposing of the M&Ms by eating them helped get rid of the awful taste of the meds in my mouth! Yeah! Later, I added a few more M&Ms to my pill box for just a little more bad taste eradication.

Over the course of the next few nights, I found that the system worked flawlessly! So, my special thanks to my cheerleading squad for the suggestions that came together to make my meds-taking experience both memorable and efficient! I couldn’t have done it without out your help!! It gets hard to think sometimes while sick, in pain, and the groggy feelings from lack of sleep that the drugs can cause.

So, thanks again for the suggestions!!!!!

BTW, apparently the elixir caused the gas problem I had!

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More good news, after finally getting past the layers of bureaucracy preventing a customer from accessing the services of doctor, which would have required me to wait for 3 weeks before seeing my doctor about my pain needs, I did obtain an appointment for Monday to discuss my situation with my PCP.

My oncologist, the doctor that didn’t want me to take Vitamin C because of the ascorbic acid it contained, wants me to take aspirin, which contains acetylsalicylic acid! As a non-steroidal anti-inflammatory drug, Aspirin can cause Adverse Drug Reactions (ADRs) especially in the gastrointestingal tract, read that as the STOMACH! You know, where I have a tumor sitting across the opening to the esophagus.

Amy and I did show up for my appointment. My doctor, as my PCP and rheumatologist, shared my view that NSAIDS were not in my best interests, stomach-wise, and put me on something stronger that should still protect my stomach.

Now, this is the point where my privacy and preservation instincts kick in.

In order to obtain my new pain meds, I had to sign a Medication Management Agreement detailing my responsibilities regarding my meds, my communications with my doctor, lab studies and random drug screenings, and what happens if I fail to comply with my agreement. I currently hold a Class A CDL (Commercial Driver’s License) and am already subject to the random drug screenings, so nothing will change in that regard.

Now, from all that info, you should be able to surmise that my meds might have a “street value.” And I don’t want some “street socialist” determining where I live from info on my blog and coming to visit me because he determined that his “need” was greater than my need. There is an entire section in my agreement describing the consequences of Lost or Stolen Medications; I LOSE! I get put in the same situation as my street socialist, by law. The only way I can then obtain relief is to do the same thing that my street socialist comrade did; steal it. Isn’t it great how laws work like that? The laws actually cause crime!

Now, most of you know me. Several of you have already experienced what happens when you show up at my door without any warning and at odd hours; I am prepared to defend myself. Now, more so than previously, I don’t have the energy to punch my way out of a wet paper bag. So, as a brand new member of the female, aged, or infirmed group, I keep a weapon handy. And I do know how, and am prepared, to use it.

Wednesday, October 10, 2007

One Big Post or Many Smaller Posts?

I HAVE been trying to post lately, even though both my kids were home.

It’s just that I kept trying to put everything into one big, although edited, daily post, which meant considerable editing each time I tried to put something together. And, after several days of not posting, that approach wasted a lot of time, unfortunately. Besides, the media lends itself to multiple smaller posts quite nicely, so why not make many smaller posts?

Unfortunately, getting to that decision isn’t as easy as it seems. Part of my “conditions” is a degradation of my thought processes. It is harder, now, for me to think logically and rationally. Although I haven’t seen reference to it in my limited reading, one can learn a lot from the questions asked by the doctors and nurses. But I’ll talk more about that later, if I remember.

So, I’ll be posting thoughts, not necessarily in any particular order, just to get things out here and still take care of my personal needs.

Speaking of which, I dropped my daughter off at the airport last night. Now, you have to know, I’m the kind of parent who used to stay right there at the airport until my child was on the plane, the plane had taken off, and was no longer visible in the sky. Tyranny has changed all that. And lately, they’ve had help from some fast-growing cells.

We got to the airport early, got her all checked in and stopped to grab a bite to eat. OK, she ate; I watched. With the change in the pain meds my S-FX (Side-Effects) have been changing a little. I actually felt hunger for the first time in months yesterday. Twice! But along with that was an increase in stomach “sensation.” Now, I’m not calling it “nausea,” although I could possibly characterize it that way. With a tumor in my stomach, I can’t eat enough to really have to worry too much about food in my stomach.

But, I’m starting to ramble…

I watched Amy eat some of her “bear stew,” minus the bear, and drink her ice tea. We walked up by the “security” checkpoint, talked for a while, and then I begged off hanging around. Now you know something is wrong right there; remember the “aircraft out of sight?” We hugged goodbye, she made it through the checkpoint, this time, and we waved good-bye for a last time. Then I made my way home.

There was something wrong with my glasses, I guess; I kept having trouble seeing.

So, I was home and in bed before her plane got off the ground.

Yeah, I was pretty beat. I decided that I wouldn’t even try to stay up and do anything like post to this blog. So, as soon as I had taken my 6:00PM meds, I sent Amy a text message telling her what was up and went to bed. I slept until my midnight meds. My son came home from work shortly thereafter so I got up, talked with him for a while, set some things up for this morning, and by that time, Amy should have arrived at her airport. So, another brief TM (text message) exchange to hear that she had landed just fine, and it was back to bed.

I overslept my 6:00AM meds alarm, apparently without ill effects, got up to put some food in my stomach, and to get this missive off to my cheerleading squad on the blog. Now, it’s not even 9:00AM yet and I’m already starting to droop.

I went into this round of chemo in better shape than the last time. And, they were supposed to reduce the doses by 20%. However, I did wear the pump for the full five days instead of three like the last time.

So with my daughter coming home, my desire to spend as much time with her as possible, everyone wanting to stop by to see Amy and me, and the changes in the chemo, I tried to do it all and found that I couldn’t. So I had to let some things slide. I’m sorry, but it was the blog.

Now, I think I’m going to go take a nap and see if I can’t post something later.