Yesterday; Miercoles, Oct. 3!

Let’s start with the three hours of sleep, or thereabouts, that I got due to the side effects of my Dexamethasone, a steroid to reduce my edema. But I’ve operated on less sleep before. And I figured I could catch a nap or two in “The Chair” hooked up to their pump.

I was attended by Nurse “S.” Now you know that something is up when I won’t give her name. As I asked Kris yesterday, “What do they call the worst graduating student from “doctor school?” That’s simple; they still call him Doctor!

That can happen with nurses as well, but Nurse “S” wasn’t quite that bad.

Although she is quite personable, watching her I wasn’t impressed with her technique. And as the recipient of her technique I was less impressed. I’ve had several hookups to my implanted port that have all happened with virtually no sensation for the needle stick after the “freezing spray” which numbs the area. As you might imagine, the needle for the port is a rather large gauge and makes a big hole. So she stuck me in a spot different than the white spot generated by the cold spray and complained that I moved. So, as you can imagine, after expecting no pain, I moved, but only after I felt the unexpected pain.

While she was off getting another needle set, I adjusted my position on the chair so I couldn’t move even if she didn’t use the spray. When she got back she made adjustments to make that more of a certainty. It still hurt.

And, she forgot that I’d be hooked up to a portable pump later. The needle set for the portable pump has “wings” allowing for taping points to secure the needle in the port. Rather than go through all the fuss with placing another needle set, all she did was place a thin membrane bandage over the needle area. I’ve listened to the crinkle of the bandage all day and part of the night, as it has loosened on top, which will allow the access of water when I shower and has allowed the tipping of the needle in the pot.

I expect better service than that.

She withdrew the necessary blood for the lab work, leaving me alone while they waited for the lab work.

Did I mention that I’d had only about 3 hours of sleep the night before?

Nurse Dawn showed up a bit later and requested that we go across the hall to the consultation rooms. I asked why and she responded that she needed to get some info from me. I wasn’t thinking that this was a prelude to the doctor’s visit so I didn’t bring my supporting paperwork with me. Luckily I had my questions loaded into my iPAQ, my PDA, in my shirt pocket. Even though we only got part way through my first question.

The nurse and I did what we needed to do, and then I waited for the doctor. We went through what he needed and then we got to my concerns. First on my list was my pain meds. Go figure.

Now, I had been surprised, considering what I had been hearing from the other oncologists, when Nurse Dawn had said that I could only take 8 PCs per day despite what the label directions on my meds say.

Even so, I was still more surprised when this oncologist said the same thing.

I told the doctor that the elixir I had been originally prescribed was a combo of 7.5 mg hydrocodone / 500 mg acetaminophen, but the pills, issued under his direction, had lowered the hydrocodone to 5.0 mg with no reduction in acetaminophen.

I tried to explain to him that acetaminophen has little effect on me. I’ve had two prescriptions for Tylenol #3 w/ codeine in my dresser drawer until recently, one from the mid 80s and another from the mid 90s, which I simply hadn’t taken because they never seemed to work for me. I’d never known what all the fuss was about with that drug. I kept them around in case I had some really bad pain so I could actually try them out.

I also brought up the issue of my right upper quadrant pain as possibly being the result of all the acetaminophen.

And I brought up the issue of the recent onset of pain from old Workmen’s Comp injuries that my PC doesn’t seem to alleviate at all; my right lower back which was injured two years ago which now involves the tendons at the top of the hip as well; my left hip joint injured in my dispute in 2004 with that Ottawa spotting truck; and a relatively new pain, this year, anyway, in the right ankle unrelated to any injury.

All the right side pain has actually caused me to occasionally rely on the cane given to me by Kris. It didn’t “fit” her; but it seems to work well for me. Thanks, again, Kris!

That’s when he, the doctor, BLEW MY MIND! He told me to discontinue my PC, the hydrocodone/acetaminophen, and to start taking aspirin. ASPIRIN!!!

Oh, he modified his statement to include ibuprofen, naproxen sodium, and the like. Whatever NSAIDS I wanted to take.

Now, because of the short time we have had together and the medical history he didn’t get, he wasn’t aware that my stomach pain that I characterized as “gastritis” before we found out that was cancer, I believed to be started, or at least exacerbated, by the naproxen sodium prescribed by a POS (Prevea Orthopedic Surgeon, and yes, I picked those initials on purpose; I didn’t stutter.) for a Workman’s Comp injury to my right shoulder. I injured my shoulder; he took x-rays, found a bone spur, and wanted to operate, RIGHT AWAY, to remove it. Oh, he’d also check the rotator cuff while he was in the shoulder.

Now, the shoulder hadn’t hurt before the injury, and after shifting the pain around for awhile due to the change in my work efforts and the physical therapy, the pain eventually went away. My point is I disagreed with a doctor’s desire to use his “hammer” to take care of a problem that probably didn’t need the use of a hammer.

And, I didn’t do my homework on the meds he prescribed, so I developed an NSAID stomach reaction.

So, since it has been on my mind, I asked about the use of spices and the extracts of spices, specifically the spice turmeric, the extract curcumin, and a brand called Curamin that contains curcumins and other ingredients, which have excellent pain and anti-inflammation properties without the side effects of NSAIDS. One double blind study had curcumin matching the effects of cortisone, a steroid!

Silly me; I asked this of a doctor whom I had to fight to allow me to take Vitamin C. He blew me off.

Now, following the doctor’s regime STRICTLY, I have only a one in four chance of seeing the next five years. He’s only interested in me following his rules for a one in four chance of living to see 60; I’m interested in doing whatever it takes to stay alive longer. I’d like to better those odds. Now, I’ll work with him as much as possible, but some things have got to change.

Now, tell me this. Why, if aspirin would have worked in the first place, did they prescribe PC for me? If it wouldn’t work then, and we need to change the acetaminophen levels now, why do we want to use aspirin?

I tried to set up an appointment with my PCP (primary care physician) but the earliest they could schedule me in was in three weeks. I asked them to see if they could get me in sooner. I haven’t heard back yet. As soon as this gets posted I’ll try calling again.

Now, you’ll have to forgive me for my attitude. My work experience and education has been in Quality Management, which usually includes customer service. I’m extremely critical of customer service issues. But with the medical profession, there is a paradigm shift; we aren’t “customers,” we’re “patients.” A science fiction author, Philip K. Dick, said, “"The basic tool for the manipulation of reality is the manipulation of words. If you can control the meaning of words, you can control the people who must use the words."

This is how they manipulate us, by manipulating the usage of the language. Oh, we, or our agents, still pay for their services, but they get to decide the level of acceptable behavior. And our “agents,” our companies and their insurance companies, make it hard for us to shop around for better service.

Look at the word "patient;" what’s it mean? Someone is a doctor’s care, right? But it also means able to “wait or endure calmly or to be persevering.” Something a person in pain shouldn’t have to do. Notice how they do that?

Now, what does the word customer mean when it comes to expecting service from a doctor? Notice the difference?

Right now, I’m associated with a place that took two months to get an appointment with my PCP, when my company changed insurance carriers, even though I was sick at the time with my “gastritis” because I was a new patient (it’s their rules); where I saw another of their doctors, on an emergency basis, for my “gastritis” (cancer) and was only prescribed Prilosec OTC; where I later had an EGD with six biopsies taken and they lost the biopsies and had to repeat (for free, at least) the EGD; and the list continues to go on today.

As sister Cuz would say, “Grrrrrrr.”

Last night I slept well until 2:00AM again. Took my scheduled meds and tried to get back to sleep.

One of the side effects of one of my chemotherapy drugs is the hiccups which manifested themselves last night after my 2AM meds. When I hiccup I sometimes ingest air into the stomach causing gas pressure on the top of the stomach.

Now, this is an old complaint for me, but one that caused a lot of problems until I figured out what was happening. It first started early in my marriage. I would get anxiety attacks and since they were manifesting themselves during the time period we were undergoing counseling, they caused some problems in the marriage.

I saw doctors for the anxiety attacks, had a battery of tests, and the doctors couldn’t figure it out. Therefore, it was perceived as a “mental condition.” Later, I found out different.

Due to the ingestion of carbonated sodas, and other sources of digestive gas, I would generate gas pressure in the stomach. Usually, I could get rid of it, but not always. When I couldn’t, or before I could get rid of it, the gas would press on a certain “magic” spot on the upper stomach, which would press on a nerve—the Vagus nerve, I believe—which would then cause heart palpitations. These would in turn would cause the release of adrenaline, causing an anxiety attack. Sounds complicated, but can happen very quickly.

Once I realized what was happening, I could actually short circuit the process, stopping or at least curtailing the adrenaline release. Then I would make a special effort to “express” the gas.

Well, it seems that the situation is happening again. I’m not getting to the adrenaline stage due to my previous experience in the 70s, but it is still alarming when it happens, especially when you’re not aware of the gas.

It happened as Nurse “S” was disconnecting me from the Clinic pump and hooking up my personal pump. Now, I wasn’t aware of the gas build up, but I noticed the heart fluctuations. Since I was watching with dismay the air in the plastic tubing going into my body—“Oh it would take a garden hose of air to cause problems…”—it still was disturbing when I have air going into my veins and my heart start to act up. Once I felt the gas pressure, I knew what the problem was and put a clamp on the anxiety and waited for the opportunity to get rid of the gas.

So, it wasn’t much of a surprise when it started happening overnight. That’s happened before with this “gastritis” episode. What is means is that I can’t sleep in a position where the gas presses upon that “magic” spot; the palpitations will wake me up. Usually I sit up, try to express the gas, and after expressing it, lay back down and go to sleep. The placement of the tumor makes the expression difficult at night sometimes, like last night.

The other thing that helps is when I change positions, when I sleep on my other side. Except I now have a “tether” that makes waking up enough to do some critical thinking necessary for changing positions; rerouting the hose, etc. Then it's hard to get back to sleep.

So, again, I didn’t get much sleep after 2:00AM. Again, I’m going to be tired all day, wanting to sleep, and knowing I should save it all up for nighttime.

Some other notes, as long as I’m here.

My daughter gets in tonight at 8:49PM. I’m looking forward to picking her up at the airport. As I mentioned in an earlier comment, I have some concerns wearing my personal chemotherapy pump into an airport.

I recently mentioned to Robin a quote by Gerald Massey that goes like this, “They must find it difficult.... Those who have taken authority as the truth, rather than truth as authority.” But, as Pontius Pilate asked, “What is truth?” It’s usually easier to determine authority than it is to determine truth.

To that end, I obtained a “prescription” from an "authority" for my pump. Now, if I can only get it out of my pocket without being shot for carrying a “mock explosive device.”

Cuz, I did find the slippery elm lozenges, but haven’t had the opportunity to try them yet. I did find another product that works well for dry mouth called Rain, at the health food store, ~$12. I tried Salivart for the same issue from Shopko at the same price but it doesn’t work well at all. The “Rain” contains xylitol, which is a type of sugar with five carbon atoms instead of the six found in sucrose. It seems to help.

And I’m doing the saline mouthwash for the mouth issues.

I’m taking a diuretic for the edema, but it depletes the potassium in my body. So they prescribed a potassium supplement. Talk about a “horse pill!” Luckily it can be crushed; it made my yogurt crunchy, this morning.

I apologize for the length of this “Brain Dump” as Robin calls them. As Marcus T. Cicero once said, "If I had more time, I would have written a shorter letter." And I have been going back and editing this somewhat.

And did I mention my lack of sleep?

Thanks for putting up with all this. And I’ll try to catch up on my email later today.