Monday, August 31, 2009

Post rated R for adult language -- skip this one if you are offended easily

I'm apologizing in advance for this rant because I know I have some genteel readers, including my in-laws. But I want to record my feelings as authentically as possible, and this post requires some naughty words. If you are offended by bad language, please skip this post and accept my apologies.


Today was a shitty day. There's no other word for it.

I woke up to the news that my employer concluded a multibillion dollar deal to which I had devoted many long days and nights of work before I got sick. It's a good thing for the company, but I missed out on closing the deal, which means I'll get none of the credit for it, and which means I'll get no bonus for its completion (this might have been, say, 20% of my compensation for the year).

And it just gets worse from there.

The shingles hurt. A lot. There's some discussion that it may be post-herpetic neuralgia, which is fancy-talk for IT'S GOING TO HURT FOREVER. Meaning after the shingles have gone, the nerves have been damaged enough that they will hurt FOREVER. We don't know this for certain yet.

Then I found out that as a result of my disease and the wear and tear on my back, I've lost about an inch-and-a-half of height. This might not seem like a huge deal to those of you who are tall, but I was a little over 5'8 when I started this journey and now I'm under 5'7, which is really a bummer. It also has contributed to my belly being larger -- the height is all out of my trunk so whatever organs, fat, and other tissue was there to begin with is now crowded into a smaller space. I'm not happy about that.

This might explain why I had trouble hitting the golf ball the other clubs basically don't fit me any more. But turns out that's not a big problem since my doctor today (GD, whom I will be seeing for maintenance therapy here in Los Angeles for the next three years) told me I probably shouldn't plan on hitting for distance and need to "take it easy" while playing golf for the NEXT THREE YEARS while I've got this fucking portacath in me.

Which brings me to my next, and final, use of profanity. They accessed the portacath today and it HURT LIKE A MOTHERFUCKER. I haven't been in that much pain from ANYTHING this entire time, including the fine needle aspiration without the anaesthesia. They first used a freezing spray to numb the area. This hurt pretty bad. I was surprised they needed to do it because I thought it wasn't supposed to hurt. Little did I know.

When the pushed the needle through, it hurt significantly worse than a normal needle stick. It hurt at the site, like a normal puncture, and it hurt subcutaneously, like a bad bruise at the same time. That was in the first of the two lumens...which was easy enough to access.

The second one was not easy to access. They thought it might be clotted.

Long story short it hurt enough where I almost cried right there. And mind you, I had taken a Vicodin (because of the shingles pain) just before I went to the doctor, so it was probably fully working as they did this.

On the old "how bad is your pain, 1 to 10" scale, I would have ranked the 10 seconds where they accessed that lumen as a 9. That's as bad as the broken back felt, as bad as the abdominal pain that required Dilaudid, and as bad or worse than when they did the needle aspiration without the proper anesthesia.


No effing way.

I'm not going to allow BB or his people to do anything requiring access to the lumens that isn't ABSOLUTELY NECESSARY. That means no more contrast in the MRIs. They don't need to look at my brain function. It's fine. They've looked at it in the past and it's fine. They want the brain MRI with contrast? Too damn bad.

I may have this removed. It hurt FAR more than simply having an IV put in. The only reason I'm not definitively having it taken out immediately is that I think it *might* still hurt from being surgically installed in the first place. I asked the doctor about this when we left, saying "well, it probably won't hurt like this every time, right?" and he sheepishly shook his head and said "well...this is probably what it's going to feel like, yes."

Great. That's just effing great.

I have to go back in two days to have more blood work done because they want it done at the same time as a 24-hour urine collection, so we'll see how that feels.

Today is the first time in a long, long time that I am furious that I got this stupid disease. It's the first time that the elusive "quality of life" issue got in the way.

I know that the most important thing is that the disease is gone. And I hope and pray that when we get the SPEP data back in a few days, that's what it will show. But right now, all I can think of is the pain, discomfort, humility and life-changes that are in store for me. It's been more than an hour since they accessed the lumen AND IT STILL EFFING HURTS!!!