Late, but still today

OK, so these things keep getting posted later and later.

Both Nurse Practitioner Nancy (forgot to mention her yesterday; sorry Nancy!) and Nurse Diane called this morning AT THE SAME TIME, to see how I was doing.

I’m still 175 pounds but am pretty tired today. Had my son take me out to pick up my Packer Candy (the Vicodin), to clarify my dosing instructions for one of my other meds, and we stopped at Barnes & Noble. While there, I was surprised to get a call from my sister, Cuz. We talked for a while which helped considerably. You see, she helped get me up on my soapbox. And then look out! I actually think that a soapbox can be a power source the way some people, like me, use them.

As I mentioned yesterday, I suffer from very little WBC activity. Since they gave me a shot to stimulate that activity, the reason for the lack thereof is probably due to my system fighting an infection or two already. The prescription for a broad spectrum antibiotic, Levaquin, would seem to support this conclusion.

With a low WBC, I won’t get normal symptoms of infections. So we have to look elsewhere for clues. Now, if I recall correctly, an intestinal infection can cause, oh, I don’t know, FLATULENCE! “Anything that causes food to be incompletely digested by the stomach and/or small intestine may cause flatulence when the material arrives in the large intestine due to fermentation by yeast or bacteria normally or abnormally present in the gastrointestinal tract.”

Since taking the Levaquin, the flatulence has, for the most part, stopped. And with the anti-diarrheal med, Lomotil, the liquid stools have cut WAY back; which prompted NP Nancy to suggest that we were over the hump.

Now, you have to blame Cuz for what comes next. She got me started on my soapbox and I have absolutely no control over it, I swear!

I had to clarify my medication instructions, the blue pills I think, with the pharmacist. I was give a prescription for the Lomotil with specific verbal dosing instructions. This was yesterday while I was pretty much out of it. Specific Instructions!

Got my prescription yesterday and I noticed a name change. OK, a different trade name. No big deal. I get home and get ready to take my meds so I read the label. Different dosing instructions. So, somewhere between NP Nancy giving me specific instructions, the script getting prepared, the script transmitted to the pharmacy, the pharmacy dealing with the insurance company and filling the prescription, and the customer, me, getting the darned thing home to consume, things changed.

By now, it’s afternoon, I’m beat and just want to lay down. What to do, what to do?

When I asked NP Nancy about the med this morning, it was back to the Specific Instructions.

Now, I’m wondering if I even have the right medication or not. Time for the sick customer to check everything out so I can be assured of taking the correct meds according to Specific Instructions.

Anybody, besides me, see a problem there?

Here’s another one.

As I was being set up with my first bag of chemo, I was given a very nice 1-1/2” three-ring-binder chock full of stuff relating to my chemotherapy. I was given handouts which were Internet informational sheets about the drugs that were to be used on me.

Since I knew I was going to be at the Cancer Clinic for a while, I had brought my Ensure and some liquids. I wasn’t sure what was going to be available, and anyone who knows me knows that “Inspector Gadget” is my middle name; if I might need it, I bring it!

So, I did note that the Cisplatin handout said that I should drink extra fluids. One of the myriad of possible side effect might be dry mouth, increased thirst, stuff like that.

The Docetaxel handout said there may be a decrease in urinary output.

The Flurouracil (5-FU) handout doesn’t mention thirst at all but does say that I may get mouth sores that may keep me from drinking liquids.

By the time I finished up the second drug, I was already thirsty. Lucky for me that I had brought fluids, although I’m sure the VLCC would have supplied me with some had I asked.

So, while in the Clinic for my first chemotherapy, I had a sensation in the back of my mouth that felt like I had a hair caught in the dry mucous membranes. The next day I identified the sensation as thin strips of mucous membrane; the “skin” inside my mouth was already breaking down. Now, was that significant? At that point in time? I had no way of knowing if it were significant at all.

And things were just getting started.

Over the course of the next few days, I continued to have the same problems I’ve had for some time, along with my newfound thirst.

The loss of 16 pounds over the weekend after the removal of the pump seemed to constitute a serious “possible side effect” that prompted a call to the on-call oncologist over the weekend. From my descriptions of the problem, it didn’t sound as if there were anything to worry about. I COULD go into ER if I REALLY needed to but otherwise….

Which finally prompted my visit to the clinic on Tuesday.

We’ve already mentioned the flatulence due in part to the WBC being low and a possible infection. Did I mention the dry, dry thirsty mouth? There was more going on with that, but how can a customer separate out all the possible side effects into neat discrete one-liners on a handout?

Remember the Flurouracil handout mentioned mouth sores that could prevent me from drinking liquids? From quenching my thirst?

Yep, mouth sores; otherwise known as mucositis, occurs in 40% of the folks taking 5-FU. While not a certainty, maybe it’s something that should be mentioned a little more than just in passing. Especially considering the implications. Read what mucositis is like!! Maybe I’m not such a wimp after all.

So this is why I was given a script for the “magic mouthwash” I mentioned.

However, by now, the dead tissue in the back of my throat is already sloughing off, leaving me with little pieces of tissue floating around in a mouth that’s filled with other strange sensations already. This is what the “magic mouthwash,” in earlier stages, is supposed to help. It’s interesting to note that I’m almost to stage 5, the healing stage, when I first get something to treat the issue!

I guess I don’t complain enough, because I sure don’t know WHAT to complain about.

Bored yet?

I guess I have problems with my “service” providers not giving me timely, pertinent information on my treatments rather than having to consult “information” providers who may have no idea what I’m going through. They wouldn’t know what is significant because I may not know what is significant.

Why give a customer a book with questions to ask your doctor? Why not give the doctors a book with the information they are to provide for their customers in a report format? They should be used to providing reports. Then, they can answer follow-up questions if necessary.

Well, I certainly need to go play with my colored meds; I forget if this hour is the red or the blue pills. And I certainly don’t want to miss my Packer Candy.

I try to take as little pain meds as possible. Always have; always will. I still remember my ex-wife, Kris, ordering my nurse to give me my pain shot after having my wisdom teeth removed and I tried to refuse the shot. LOL But maybe I need to take my pain meds a little more freely than I’m normally inclined to.

Anyway, I’ll keep my appointment on Friday for more lab work and a visit with the Doctor. Maybe we'll hear the hump has been passed.