Laurie White’s Blog

Now really, do you think I have enough energy to do the whole “Neurontin” cheer?

If so, you haven’t had shingles and radiation therapy. Thankfully, the semester was over last week and I got paperwork out for the CCSC:SE conference this morning. So I can continue with life as I’ve gotten used to it. I get up around 6:45, take a Neurontin, and go back to bed to read for a few minutes (I’m rereading Little Women after reading March). I wake up 2 hours later and start my day.

But, the great news is the Neurontin seems to be working. I haven’t had a PHN attack since Sunday night.

Rah! Rah! Rah!

My doctor increased my dosage from 1200 mg to 1800 mg. The initial 1200 mg dosage was prescribed as a prophylactic measure. I used to dislike taking prescription drugs, but I could learn to love prophylactic drugs.

I got lots of anti-nausea drugs prophylactically during chemo. And it really did make more sense to take drugs rather than wait to get nauseous. I was given Neurontin just in case I might get PHN. It takes a week for it to work, so it made sense to start it and see if I needed it, rather than wait ’til I needed it and then have to wait a week for it to help. It did take a while for the increased dosage to stop the attacks and I won’t be devastated if I get another, but the increased dosage does seem to help.

Now, I still got all sorts of strange pains and itching and quirks all over the affected areas, but, eh, I can live with that.

Other than not getting sick, not much is happening. Charlie is getting ready to come home from Poland and should be here within 24 hours.

Ike is getting too durned smart. He was chasing the dog Linus around the den. Linus started circling the sofa there. Ike stopped running, turned around, and crouched to get the dog. Sure enough, the dog ran right into the attack.

I’d love to get a picture of them wrestling. But they’re just a little too fast for my camera. And fights stop with no notice…it’s sweet. Somehow they can communicate to each other that it’s time for the fight to end and it does. You’d think one of them would run away to stop the fight, but it can stop with htem standing next to each other. There’s some sort of strange territorial marking going on. Ike will not get on the bed when we go to bed; I think because Linus has laid claim to it. But if I get up in the middle of the night, Ike will come back to bed with me.

Of course, neither of the animals sticks around when I start screaming. It’ll be good to have Charlie home!

So, we went to see my “regular” doctor today to follow up on the shingles. (I did routine follow-ups with my surgeon and oncologist yesterday and chatted with the radiologist Wednesday…nothing noteworthy so far.)

He reviewed the notes of his colleague who had first seen me and said “Well, you had the worst shingles rash he’s ever seen.”

Oh boy, that’s a distinction I want.

But I was a little concerned. I mean, everyone’s had shingles, it seems. But I’ve been a real wuss about this compared to them. But maybe it was a little worse than usual. As my doctor looked at it, he, a professor of medicine at Mercer, said “Wow, is that all from one nerve group? I’ll have to look at an anatomy book.”

It looks like the daily screaming pain attacks are part of the post shingles pain. Even worse, it may go on forever. Fortunately, I can stay on Neurontin as long as it helps and there’s another possbile drug out there if it doesn’t. We even increased my Neurotin dosage to try and get the pain under control.

And I am lucky to have such short term pain. Within 5 minutes of my latest attack (at 5 tonight), I was out walking the dog.

Oh, and the radiation I was so afraid of? It’s still going on. I’m even more than halfway through. On my 15th day of treatment (of 30), I asked Charlie what he was going to do to celebrate me being halfway done–special dinner? cake? Well, I got a strange look if nothing else.

Okay, so I have a lot of math background to go with my CS, so I want to find patterns. I’ve had an attack (from what I’m calling postherpetic neuralgia or PHN; we’ll find out tomorrow if the doctors agree) every day since Saturday. It is not at all pleasant, but at least, so far, it’s been short. The pain ranges from 9 to 10 on the good old “Tell us how bad your pain is on a 1 to 10 scale” but is mostly gone in 5 minutes and is just a memory in 10.

So, what causes it? When will I get it? Looking back at the last 3 days, I’ve had attacks:

• Monday at 11 PM in bed.
• Tuesday at 9 AM in the recliner in the den
• Wednesday at 2 PM in my car on I-75

So, what time and where do these attacks happen? So far, the pattern I see is no pattern. But, I do only get one attack a day. Which means today will be a great day, since I was awaken at 6:30 with an attack. I won’t get another, right? (It reminds me of a poster from my youth: Eat a live frog first thing in the morning and nothing worse will happen all day. Of course, PHN is worse than eating a live frog, I do believe.)

The attack Wednesday was particularly fun. I try not to yell too much during attacks at home since it can bother the animals and Charlie. But after I pulled off the interstate safely onto the shoulder, I could scream at the top of my lungs. And I did and was almost quiet compared to the semis rushing past.

So, why do I think I have PHN? From the WWW site http://www.neurontin.com/:

Postherpetic neuralgia (post-her-PET-tick noo-RAL-juh) or PHN is pain that continues after the rash from shingles heals. It is caused by nerve damage from shingles.

If you have had shingles and now have pain, you may have PHN.

Anyone who had shingles can get PHN. In the United States, about 10% to 15% of people who have had shingles get PHN. It is more common in people 60 years of age or older. But you can also get PHN if you

• Had a very bad rash when you had shingles
• Had a lot of pain from shingles
• Felt pain before your shingles rash started
• Have trouble fighting infections (such as from cancer or an organ transplant)

Bad rash? Yes.

Lot of pain from shingles? Yes?

Felt pain before the rash? Yes?

Cancer? Oh yeah.

At least I’m not over 60.

It’s a good thing I don’t believe in a deity who appears and gives you choices like “Cancer or shingles?” I’d have an awfully hard time selecting shingles now.

Okay,

So I was ready for the problems of chemotherapy and wasn’t too set back by surgery. Radiation has been okay so far. But, my, has shingles been a surprise!

Now, the drugs worked well and I’m getting used to the sheer exhaustion. Fortunately, last week was finals. I really thought if I worked hard, I could still get stuff done. Turns out, I was wrong. It took me 4 days to grade a final that normally would have been done the same day I gave it. It took almost forever to write my second final and on proofreading it at home before giving it, I discovered major problems. The only way it got given at the right time was that Penny, the departmental secretary, printed and handed it out for me. (Thank you so much again Penny!)

But I was just sitting and not grading tonight and, all of a sudden, the rash (which had been clearing up nicely, I thought) started to tingle. It started at the front of my right thigh and in seconds had begun to burn. Then, maybe within 15 seconds from the onset, sharp pain set in and it followed the rash line around my hip to my back. I’m not really sure what happened next because I was screaming. Charlie tried to get me to stand, but I was too busy being in agony. Maybe this is what it feels like to pour acid on your leg and have it drip around to the back, but I’m not going to pour acid on my leg to find out.

Charlie ran to get pain pills and helped me stand up and it seemed to disappear. Not quite as quick as it came, but awfully fast. I think I may be learning what postherpetic neuralgia is. (Hey, I can even pronounce it!)

So, cancer treatment isn’t that bad. At least not when compared to shingles. Almost makes you wonder if my team of doctors somehow decided to infect me with shingles so I’d appreciate what a good job they were doing.

But, ya know, I knew what a good job they were doing. So, that’s probably not it.