Laurie White’s Blog

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.

So, each day, Charlie looks at my rash and claims, hopefully, “Well, I think it looks a little better.” But I look at it and it still looks red and purple and blistered and just as bad.

But this morning, the ninth of the rash, it does look a little better. I’ve got some bright pink skin without blisters where the rash began. If I hadn’t had the last 10 days, it would really bother me to see such skin, but right now, it looks durn good.

Okay, so Letterman had shingles and, of course, had to do a Top Ten Best Things About Having Shingles List. Unfortunately, he couldn’t quite find 10 good things about shingles. Now, I don’t blame him. There’s very little good about shingles.

But I’ve actually found a couple of positive things that have come from having shingles. Since there aren’t 10, I figure I can start at 1:

1. I wasn’t just being lazy after the second surgery.
2. The pain in my left side doesn’t seem as significant as it did after surgery.
3. I’ve had a week of radiation and haven’t had a complaint about it yet.
4. I’ve still only had two sciatica attacks in my life.
5. Once you have the right diagnosis, it’s much easier to get the right treatment.

Now, just because I felt so much better, it turns out I wasn’t completely well. I taught both my classes today. In less than 10 minutes, I was sweating like a race horse. I got very tired, very fast in both of them. But the pain never returned, even though I skipped pain pills this morning.

Still, there’s just one day of classes left. I’m even caught up on grading in one class.

Thnigs could be a whole lot worse, and believe me, I’ll remember that.

The pain is essentially gone.

I can’t believe the relief, the euphoria, the complete change that has made.

Treating for the right disease is a very good thing.

Well, it’s happening.

I was supposed to go see a new gynecologist this morning. Charlie, who has lots more sense than I do now, went in before me and asked if I should come in, having shingles and all.

The place apparently was full of pregnant women and children. I didn’t get to see a new gynecologist this morning.

Next is to find out what happens with my radiation treatments. I’ve had the rash for all of the treatments so far, but they didn’t know that. (Well, I did tell them yesterday, but that was before it was anything other than a rash.)

Usually, it’s easy, or at least doable, to post to this blog. Even if things aren’t going well, I can find some bright spots.

And I’m trying to be honest about it all, since others may be going through the same thing and if I just say, “Hey, it’s all great.” I’d be making them feel something’s wrong with them if they aren’t happy and positive all the time. Charlie has a real problem with people being praised for fighting cancer well, because what does that say about those who die from it? Are they losers who didn’t fight hard enough? (And remember, the only two people Charlie knew with cancer before me, his grandfather and my mother, died from it. Neither of them were losers.)

Anyway, I’ve spent the last week in agony and haven’t been able to find anything good about it for most of the time. I’ve had lots of back and hip pain. I just wanted to curl up in a ball and cry and have the world go away, but curling up in a ball hurt too much. Everything hurt too much. I thought it was sciatica. The guys in the emergency room Friday night thought it was sciatica.

Then I went to my family practice clinic and got what I figured was worse news. I’d had a rash develop in the same place as the pain Thursday, I figured from my hip being sweaty from being on the heating pad. Prickly heat, right? The doctor took one look at it and said “Shingles.”

Shingles?

All I knew about shingles was that they’re incredibly painful and hard to treat and not something I want to have at all. I mean, I’ve had cancer. Isn’t that enough for the year?

But no, I have shingles. Now, it does make sense. It hits when your immune system is low, which mine has been. Charlie was upset at how lethargic I’d been after my last surgery, but you can have symptoms of shingles weeks before the rash and, yes, one of them is lethargy. All the little (and big) things that have been wrong can be explained by shingles. I may not even have sciatica at all.

But, the morning after, the good news is, the shingles treatment seems to be working. I’m sore and achy. I had trouble finding a position that was comfortable to sleep in for more than 2 minutes and think I was spinning like a top last night. But I’m not in excruciating pain, so I have to be pleased.

I haven’t said “It’s just not fair” through this whole thing yet, but if I were going to, I think it would have been during this last week. But, once again, a good doctor is doing all he can to help, I’m getting better healthcare than 90% of the world, and it’s working, so it really isn’t fair. But I’m the one on the “unfair good” side.

Given how much I was hurting yesterday morning, I really didn’t think I’d ever refer to the cause as “just” sciatica. But it feels good to do so now.

On with the story…

So, normally my sciatica pain subsides after just a few days once I start aggressive treatment. I started aggressive treatment Tuesday and sorta thought I felt better Wednesday and Thursday. Of course, I didn’t teach Thursday, so got to take it easy.

Friday morning was a different matter. I hurt. Lots. Classes were interesting…I’d talk for a while and then have to stop mid-sentence and hold on to a table or sit down and grit my teeth as a wave of pain passed. A reasonable person would have just stopped class. But the pain always stopped in 10 seconds or so (I thought), We just have one more week of classes. I’m giving a test in one class Monday. I had to stick around campus so I could go to my radiation appointment at 2:15 (which is a nonevent in all of this). And, most obviously, I am not really a reasonable person.

When I talked to Charlie as he was driving home from Florida, I mentioned this to him. He called my primary care doctor to get me an appointment to be seen. (I didn’t think much could be done–it’s sciatica, it’ll pass. But he’ll be home all next week and didn’t need me whining about the pain.)

About 5 minutes after Charlie made an appointment, I got a call from the nurse. She’d told a doctor why I was coming in. Somehow, she also mentioned that I’d had surgery two weeks earlier. The doctor was concerned that instead of sciatica, it might be a blood clot causing the pain.

Sciatica is a big pain in the ass, literally, but blood clots are potentially fatal. (I had a 30 year old Girl Scout leader die of one when I was a kid.)

So, the nurse told me to call my surgeon. My surgeon’s answering service had the on-call surgeon call me back. The on-call surgeon didn’t have a definitive answer, but did say if it was a blood clot, it should be taken care of immediately. But, because it was a Friday afternoon, there was no way to do that except in the emergency room.

(By the way, I was asked a number of times if I was referred by a doctor to the emergency room. I told the first person that whole gory story. I told everyone else “yes.”)

I told Charlie this and he got home way too fast. He took me to the Emergency Room at MCCG and I was in triage before he got the car parked, around 6:00. Charlie knew the pain had to be bad because:

1. I didn’t tell him going to the Emergency Room was a dumb idea.
2. My blood pressure was more than 50 points above normal, which the nurse attributed to the pain.
3. When asked to rate the pain on a 1 to 10 scale, I gave it a 4 to 10 (and had to hesitate, because I really wanted to go to 11, but figured they may give me a Spinal Tap if I did–in joke?). Throughout our 22 years together, he’d never heard me mention a pain of more than 7.

We then spent two hours in a private room in triage while they waited for another room to open. There was a lot of hurry up and wait, but we expected it of an ER. But MCCG is nothing like television ERs, thankfully. We had a private room with solid walls, a private bath, and a TV. (The bathroom had that special “feature” of having them come in and ask for a urine sample as soon as you flushed!) We got lots of attention when we got in. Everyone seemed to agree it was probably sciatica, but they couldn’t rule out a blood clot without an ultrasound and you just can’t get an ultrasound in Macon on a Friday night. Or Saturday or Sunday normally.

Finally, after the X-Rays didn’t show anything, around 10:30, they decided to take a blood test that would indicate if clots were likely to form. A score of 0 or below on the test is a “no” and 2 or higher is a “yes.” Around 11:00 the nurse came back to take more blood (and was shocked we didn’t scream at her–sheesh, giving blood is the least of my problems). We had a nice chat with the nurse about Katherine Harris’s joke of a campaign too. We then fell into the shift change hole for about 2 hours. Or maybe the lab was slow. Or maybe it was just doctors trying to figure out what to do with me because I got a 1 on the test.

“Fortunately,” there was a woman in a room next to ours who also had something that might be a blood clot, so they’d arranged to get ultrasound people in Saturday morning to check her out. I may as well go then too.

We got home around 2, to get up at 7 to get back to the hospital for an ultrasound at 9. The tech who was to do the ultrasound had her house hit by lightning last night (a nasty storm moved through), so was an hour late, so we had lots of time to talk to the other woman, who was just 24 and had something moving in her leg after breaking her foot a few days ago. (She also had a 1 on the blood test.) She made me feel a little less stupid about not trying to get an ultrasound Friday…she’d tried to get one that morning and was sent to the emergency room at 1:30 PM. Fortunately, she “just” had a 7 cm cyst.

And I “just” had sciatica.

Besides the peace of mind, there were other good results. I got a couple of shots last night (and in the time it took to get the blood test results back, after the shots, my blood pressure dropped about 50 points) and some more steroids to take this morning (the pharmacy at Kroger is delightfully empty at 7:45…Charlie had the prescription filled in less time than it normally takes to drop it off). I think I’m feeling better. I get to keep taking pain meds.

I think I’m feeling better. I hope I am really and it’s not just the bounceback of not having to worry about waking up dead before Monday.

Hey, I “just” have sciatica.

Well, during chemo, I felt guilty that things were going so easily.

I no longer feel that way. I figure I’m finally paying my cancer dues.

I knew I’d have side effects from the treatment. I just didn’t anticipate the side effects of the side effects.

I had surgery to remove the cancer. Fine. But the post-operative pain led me to sleep funny and brought on the side effect of sciatica. So I slept on a heating pad (yeah, yeah, I know I shouldn’t, but it turns off after an hour) to help the sciatica. But now it looks like the heating pad has caused a rash. (Fortunately, I noticed it yesterday morning before radiation started, so I don’t have to worry that it was caused by the radiation.)

It’s not a big deal. I remember all the side effects my mother had from her lung cancer treatment; they had to go so far as to amputate one of her legs to deal with them. But it’s just frustrating to be this close to the end of treatment and to keep getting surprised by stupid little things.

I’m just waiting to see what’s going to happen as a result of the cream I used on the rash. Will my skin dry out? Will I get joint pain? Will my teeth turn purple?

Bleh.