My Burnt Nerves

**WARNING, THIS POST CONTAINS
GRAPHIC PICTURES AT THE BOTTOM**


***IF YOU SCROLL DOWN TO LOOK,
DO NOT SAY I DIDN'T WARN YOU!***

A short time after my last post, I went through some of the most horrific pain of my life -- correction: the most horrific pain of my life. If the swelling wasn't enough, it felt like my foot was being burnt alive. I think my foot just stopped burning, and my last radiation treatment was a week ago.

With that much pain, I felt like I was starting to lose my mind. I did not realize that a human could reach such a point to where the pain could start eating at one's brain... this is exactly what it was doing. I felt like I was losing control. I've had two days in my life that have been unbearable, days that I wish not to have to go through again. Those two days were last week.

My friend Jay Watts was with me when I was losing grip. He would be the first one to tell you that I made myself very clear to the docs at the OHSU Radiation Oncology clinic that things were not working, and they had better halt the radiation asap or do something immediate to get me out of the painful hell I had been living. Unfortunatly, the addition of pain medication did no good, and in fact started giving me breathing problems. Being swollen up all over my body, feeling burning flesh, and the added breathing difficulty were proving to be all too much. In the days that followed, friends Michele and Virginia Sawin could tell I was starting to come apart not only physically, but also mentally and even emotionally. They were brave enough to put up with me a few more days. Driving me back and forth to Portland each day. There was one day when I thought I would have to cancel my appointment, but Michele showed up at the last minute and saved my bacon. I missed a day and a half of work from that week, then got through the weekend without too much difficulty. This past Monday proved to be yet another challenge with more pain and swelling. By Tuesday I had huge blisters forming on my foot, this is when the doctors halted my radiation treatments. Those who were around me knew I wanted it to be much sooner than that.

In the beginning I was told I would have 17 radiation treatments, with a possibility of going to 20 if things held up all right. Things held up all right at 17 treatments, but in the 18th and 19th treatments, things got extremely painful, and by the 20th treatment I saw those nasty blisters. But at the 20th treatment, I was told that I would be having another 3 treatments. My response was "what?" -- and even the radiation oncology nurses said they were surprised by it too, but my radiation oncology doc ordered it literally on her way out the day before. She went on vacation the day after, so obviously no one could ask her what the reasoning was. Fortunately, due to my complaining the nurses got me in to see the other docs, and they agreed, the radiation needed to be stopped, probably long before this point.

The Tuesday and Wednesday of Thanksgiving week I was forced to stay home from work, as my foot was turning into one big blistery mess. It was at this time that some new medication (liquid morphine and 40mg of Oxycontin twice a day) was finally starting to curve my pain. FINALLY.

Wednesday night I went on a "death mission" and drove myself to Hood River, even against the doctor's recommendations. It was one of the dumbest decisions I have ever made as I had tremendous difficulty driving, the pain and swelling almost prevented me from driving all together. I finally reached the hotel about 8pm where I waited for my mom to meet up with me. She got a ride down with Keithanne who was going to see her daughter in Beaverton. We figured Hood River would get us out far enough to make it home at a decent time for Thanksgiving dinner. She arrived about 10:30pm and we left the next morning. By this time the swelling had paralyzed most of my body. We arrived, and I waddled into the house with each parent by my side helping me in and up the steps where I would sit in a reclining chair for the next four days straight. With foot above the heart, drinking plenty of liquids, and having the TLC of my parents by my side I am happy to say I have improved by leaps and bounds.

Most of my swelling has subsided. There is some areas in my waist that are still swollen, but my chest, legs, and feet are nearly back to normal.

Simple things like using the restroom and taking a bath have been a chore. Things that normally took minutes took twice if not three times as long.

Now, back to the blisters. I have some pictures below that might gross you out... but if you've read this far, you probably can handle it, right? Well, we will find out... but basically when I was getting into the bathtub the other night, one of them opened. The ooze that come out was disgusting. I can describe it as a bright yellow clam chowder discharge. Oh, and the horrific odor, I can't even describe it, it almost made me gag myself. The second blister that burst had a more typical yellow liquid and poured out like a hose. It was a both disgusting and amazing thing to see. The human body is a very interesting thing, and I can tell you that first hand now.

After talking with my friend Alyse tonight, I had a better understanding of people and how they are when you are sick. She has been through quite a battle over the past two or three years with her illness. I will save her story for another blog entry, but basically it comes down to needing help when you are down. She said you basically can't rely on others when you need them. I have learned that statement is very close to true. It's sad but true, and you learn who your good friends are and your truly great friends are. To be all out honest, I have "friends" who didn't even respond when I asked for help. Then I have great friends like Virginia and Michele who helped me out immensely, driving me to treatments everyday -- until they got burnt out. Jay Watts and Thane Shetler spent time whenever they could to help me as well. This coming week I'll be in good hands with them as well as my mom who is going to be staying the entire week with me in Salem.

But the true award goes to my parents, who spent the past week waiting on me hand and foot. Helping me in and out of the chair. Making sure my foot was propped up like it needed to be. Changing my dressings twice a day, and keeping my overall spirits up. It was exactly the kind of TLC I needed after this whole ordeal. I can tell you that good health is that light at the end of the tunnel I can now see because of the rest, good diet, and treatment I got from my folks.

In writing this (now very long winded) blog entry, my supervisor from ODOT called. To my relief, she said they are behind me 110% and to not worry about a thing except to get healthy. She stated how well I have done in the past month and that they just want me to get healthy and to return when I feel it is best. Luckily she had checked her voicemail this evening at her office and got my message -- said she wanted to call to relieve me of any worries. I know with a supervisor that caring, that I have gone to work for an incredible organization.

Now with all that being said, here is the visible proof of the pain and ordeal I have gone through... ahhh, yes, the pictures of those God awful blisters:

JUST GIVING YOU MORE SPACE JUST IN CASE YOU CHANGE YOUR MIND












OKAY, IF YOU ARE SURE....












THEN, HERE THEY ARE...

YES, HERE THEY ARE, AS PROMISED:

This first picture, you can see the very large (almost fake looking) blister at the base of my toes.

A closer look offers a different perspective on how big this blister truly is. There is a gauze pad stuck to my skin below it.

This one is a little better with some flash action

Blurry, but still a different view


You can see my second blister down in the bottom left. Both really big blisters right? Have you ever saw blisters this large before? Didn't think so.
An attractive shot to show you the discoloration of my skin post blister explosions. At least I was nice enough to not show you the yellow gue, right? I washed it off before I took this pic, common courtesy folks.

As you can see the once large and mighty blister at the top is now just a sunken layer of dead skin.

This picture is a bit washed out by the sun, but you can see my skin is almost black near my big toe.

Here you can see just how raw my skin is after part of the blister's skin is now gone. That red section above is a PAINFULL area, even if air hits it wrong, I'm screaming!

Just a closer view of the burst blister. And that's just a towel my foot is sitting on -- no reason to be alarmed!

A closer view of that painful red, raw, and exposed skin from the blister.

So there you have it folks, you can now see almost first hand of the ugliness I've had to deal with over the past few weeks. This is something I've been dealing with since early August actually. Then, it just looked like a larger than normal zit, but unfortunately it grew, to the point of being a Lymphomatoid Papulosis spot. Since I've had this condition from 11 years of age, I was not alarmed... but then it kept growing. Things got scary when it opened up and just never showed any sign of healing. The local doctors in Wallowa County hadn't ever seen anything like it. Finally, with my urging, I got into OHSU, where there was a doctor who knew what it was... Dr. Eric Simpson. Probably one of the brightest guys in the state of Oregon, and a darn good dermatologist, too. He had enough common sense to take a biopsy of it for the first time. Something that didn't happen in Wallowa County (but should have). Just days later, the biopsy that Dr. Simpson took, revealed tissue of Lymphoma. From there, I saw Dr. Craig Okada, another brilliant mind in Oncology who recommended radiation. Then I saw Dr. Marquez, who put me on the stint of radiation (which worked like it was supposed to), until about 20 treatments, and went south. Things got ugly... and finally Dr. Holland stepped in. We got pain under control and stopped the excessive radiation. Now that I'm bouncing back, I am questioning what all this ridiculous extra radiation was for, and why my body's reaction to it was more or less ignored -- even after my repeated complaints. Thankfully Dr. Holland took me seriously and I'm here today telling you yet another tale of LB. So what happens next? Well I'm going to get to the bottom of the mistake that was made, and will save it for future blog entries in the coming weeks. Also, I'll let you in on my return to work and tell you just how much I love my job, friends, and family, and perhaps in the not so distant future... life in general.

-LB