johnny ur

Update August 29th - Pain Management Edition

The last two weeks have been a bit of a blur, as evidenced by my lack of an update. Let's just talk about this past week and my current status. Though I don't quite remember when it started, I've had abdominal pain pretty much since I left the hospital the last time. Over the past week, that pain has become harder to control. My pain meds did not seem to have as much an effect as they did previously. Every day became more of a struggle - to move, to sleep, to function. And much like my previous experience with unrelenting fatigue, this unrelenting pain took a major toll on my psyche.

I was very depressed this week. It felt like my body was not healing itself, more like deteriorating. I can handle the idea of death, but I can not deal with uncontrolled pain only leading to death. Emotionally, I was overloaded. I was crying myself to sleep, if I didn't drug myself up enough to sleep for 12 hours. I would cry after taking my blood thinner shot, not because it was painful - even though it was - but it was pain that I would/will have to endure every day for the rest of my life. And for what? Only to have the rest of my body waste away? 

I would cry at random times through out the day when I thought about my desire, or lack thereof, to go outside and enjoy the sun. And then there would be times when nothing was going on, and I would cry. Something had to be done.

Friday, I came into CINJ to meet with Dr. Maria Rueda-Lara, the Therapist/Psychiatrist here. She is a fantastic person to talk to and is very empathetic to everything I had to say. She knows the right questions to ask. And it was on her recommendation that I checked into the hospital here to get my pain under control.

So yesterday, I checked into my apartment on 5 North  at RWJ Hospital. I'm hooked up to a Dilaudid drip which allows me to push a button when I'm in pain. The doctors have been very amenable to changing my dosage until my pain is controlled. The idea is to figure out the correct level/dosage for me while I'm here so that we can send me home on oral pain meds of the same effectiveness.
Everything was going fairly well - but then of course, I had to spike a fever this afternoon. Blood cultures, antibiotics, urinalysis, chest x-ray: They took the usual precautions but I haven't heard anything more yet. We'll have to wait and see if this is going to be some big wrench in my treatment or just a minor glitch.

It's about 10PM and I need to try to get some sleep because my eyes are drooping. I'm sure I'm leaving things out, feel free to ask about it...

And to answer some questions from a previous post:
No, Rit, there is no current treatment protocol.
Yes, Sarah is still here providing tremendous support.
And my appetite and weight are turning the corner towards the positive.

Thanks for the support everyone.

Orrin Hatch doesn't know what he is talking about

I heard a soundbite from Republican Senator Hatch today, in which he said (I'm paraphrasing): "Our healthcare system works well for 275 million people. It's only the 15% of uninsured that we're trying to reinvent the wheel for..." or something along those lines. This is the argument against the Democratic-backed health care reform bills. Well, as someone who is insured, I have to say Mr. Hatch is very wrong. Our current insurance system is, indeed, broken. It is, indeed, inefficient. It needs to be fixed. And when it is fixed, I believe it will save us money in taxes and help businesses to grow by releasing them from the burdens of required coverage for their employees. And if Republicans are so against the current ideas being presented, let's hear some ideas from their side - instead of blanket "no"s to anything new.

You can have your pulpit back now.

August 18th - Current Status

Some of this may be repeat info, but I was writing an email to a friend when I realized that I could explain my current situation more concisely. So here's a copy and paste from that email:

I've lost some weight and look pretty awful (skinny - as far as I'm concerned), so the goal now is to get my liver system functioning correctly and gain some weight. As for my liver - I've got 3 drain things going on - there are two lobes of the liver, left and right. On my left side, I'm doing ok. I have an internal stent which holds open the bile duct to that lobe and allows the bile to drain to the small intestine/duodenum.

On the right side, before last week, there were problems with the drainage. The docs couldn't get a stent in place internally - junk was backing up - causing fevers and sending me to the hospital. They inserted an external drain - connecting my liver to a tube and a bag that I strap to my leg. Everything was flowing well with that setup until I was in the hospital again last week. Then the drain started leaking externally making a big mess. They took me in again to replace the tube with something larger and were able to also insert an internal stent. This was good news.

But with all of these drains and stents, the stuff that comes through has a high viscosity - not like water - more like mucus and other junk - so they have a tendency to get clogged. When things get clogged, I get fevers (likely caused by bacterial infections). So right now, I'm trying to keep my external drain flowing properly - it was clogged this morning. I have syringes with saline that I use to flush the line.

I'm also on blood thinners now. So I have to give myself a shot daily, like insulin for people with diabetes. It's not so bad. Putting the needle in is actually less painful than the after effect. It stings for a few minutes when I'm done. It's just another piece of garbage I have to deal with daily. They have me on 3 different antibiotics right now until Thursday. I'll be happy when those are done - subtract one thing from my list. Of course, then I'll have to watch out for fevers caused by any infection the antibiotics were covering :)

Hopefully, that clears up some things and updates you on others. Feel free to ask more questions if anything is unclear.

Update - August 14th Shock and Awe Edition

For the past week, the doctors at Robert Wood Johnson Hospital have been searching my body for a rogue group of bacteria that have been causing infection (and subsequently fevers). They've cultured my blood - drawing samples from my port, my right arm, my left arm. They sampled my urine, my feces, my bile. With the exception of a bile sample, everything came out negative. But we know they're in there - somewhere in the caves of my liver. When I arrived at the hospital last Tuesday, the basic war strategem was to carpet-bomb my body with all kinds of antibiotics.

Besides penicillin (which I'm allergic to), they infused me with every antibio I could think of, and some I've never heard of... For awhile, no combination worked well.

My fevers finally started to subside when we got my liver drainage working properly. It took some manipulation. They placed and external drain in my right lobe. My left lobe needed another ERCP to exchange the plastic stent that is currently there. The right lobe then started getting blocked again - or at least leaking like crazy. Back to the procedure room. This time, they were able to fix the external drain and even go in a little further and place an internal stent to mirror the one on the right.

So now, I feel like we're hunting Taliban. We sort of know where they are, but not exactly. Somewhere in the caves... Hopefully, they got scared off from all the missile attacks.

Besides all that, I decided to develop a pulmonary embolism, a little pneumonia and a strong distaste for hospital food. The PE (blood clot) could be deadly if it wasn't so small. It caused a rapid heartbeat and made it very hard for me to breath. This was the first thing that sent me to the hospital after my chemo treatment last Wednesday. They did a chest xray where they found the PE and also some fluid - which was eventually drained through thoracentesis. That's a story for another time. And I probably don't need to get into the food comment.

I'm back at home. Resting, recuperating, taking antibiotics, trying to eat food, which is mostly unappealing right now, and using my inspirometer (sp?) - this thing where you breathe in and out to make a marble float in a tube. It's supposed to force you to expand your lungs - definitely something I need to do now. 

I'm not in much pain right now... a little shoulder ache, and some aching in my upper abdomen. My biggest problem over the next few weeks will be gaining weight back and energy. I am officially off the second clinical trial of chemotherapy and I'm going to use the next few weeks to recuperate and make some decisions about how I want to move forward with my treatment... or without it.