Day 134: Renewed Hope

Not sure where to start. It was a long week with a ton going on. Started my trial on Monday and continued through Friday. Made for extremely long days with being in the clinic for 4-5 hours at a time. Also had my standard clinic visit on Tuesday which added a few hours to the whole ordeal. Luckily, I haven’t had much progression over the last 3 months so it was fairly uneventful.

PT rep took my standard readings such as hand grip, foot test for driving, general strength ratings. My hand grip has remained relatively the same over the last 4 ½ months at 110lb in each. My right hip seemed a bit weaker but I also had an iv line in at the same time and was uncomfortable with movement. Overall (minus 1 person) everyone felt that I’ve held up well. One wanted to put me in full orthotics and a walker or wheelchair. I typically dismiss this person immediately regardless.

With having an IV and being under observation for half the day I wasn’t running around the office like a chicken with its head cut off. I’m not sure if that’s what produced an energy boost this week or if the drug/placebo is working. It’s extremely hard to judge things when you throw your weekly schedule out the window.

On Monday, I felt relatively fine but developed a migraine and then extreme fatigue to the point that I passed out at home for a few hours. I never nap and can’t normally force myself to fall asleep during the day so this was extremely odd. Tuesday was the same and the migraine continued a few hours after the infusion. I never get headaches so this was tough to deal with. Also, I just felt weak. Ended up stumbling and falling a few times in the clinic. Trust me the last place you want to fall is in the clinic. After that I was thrown a walker (didn’t use it) or forced to hold my wife’s hand when walking around. That slightly irritated me. I’ve been independent forever and didn’t sit well with me to be told I couldn’t be. That’s one thing I’m struggling with in general.

Now Thursday got a bit interesting. I had some fasciculations and tingling in my left leg which has been “dead” below the knee for over a year. Also, I started cramping all over like I never have. When I say cramping I mean full toe/leg locks, stomach cramps, and everywhere. Friday, it took me about 45 min to put on a pair of socks for dinner. My toes were locked curled and when I bent over to try and pull them straight my stomach would lock. Magnesium drink to the rescue but wow what an uncomfortable moment.

Here is the weird thing though. Saturday and Sunday, I was wide open. I’d felt high energy a few days but thought it was from additional rest. This however was just overdrive. Sunday, I was out in the yard all day mowing, moving things, and even carried some bags of soil around. On a normal day, I struggle to walk with a laptop bag. I also noticed my leg movement to be a bit better. This maybe TMI but one thing I can never do is get my last pant leg off standing up. It’s like a battle where I just pray not to fall. Without thinking about it I just slung the pant leg off and kicked it 5 or 6 feet. Absolutely amazing. No falls for the weekend minus me trying to walk down a muddle hill after a beer and a happy pill. I knew I was going to fall I just wanted to see if I could do it.

Overall though I just feel better. I’ve had moments of walking without my can where I don’t feel off balance and even some longer walks where I didn’t feel the need for it. My appetite also skyrocketed. Ate 2-3 plates at dinner last night like I haven’t in forever. Normally I’m just not that hungry but the beast wanted to be fed. I’ll keep an update on how this week goes but I’m pleasantly surprised over my state and have some hope of a positive reaction to the meds/placebo.

Day 125: And it begins

I could make a nice excuse about why I haven’t posted but I’ve flat out just been busy and not focused on it. Things haven’t gone too downhill health wise. My FVC is still above normal and while I’m progressing it’s pretty slowly (knock on wood). It’s easy for me to say slowly progressing but I think back to a year ago and I was much different. I could still get around well without a cane and now I can’t get 10ft without it.

Good news I start a clinical trial on Monday. While I’m excited I’m also a bit petrified by it. There’s no real big health risk but mentally I’m not sure how to deal with a 50/50 shot at getting a drug that could change my life. Many people have stopped progression completely and some have actually gained strength. So how do you mentally prepare yourself for not getting it? Then take into account that if I do get it I’m taking that gift from someone else. It shouldn’t get to me but it’s definitely thrown me off keel.

The second part of this is that this drug currently doesn’t offer compassionate care after the fact. Basically, I would get the drug for months, be taken off to see my reaction for months, and then thrown back into the world. I get it but I think it’s a tragic flaw in our medical process. Personally, I feel that people with terminal diseases should have the choice. If a company is testing a drug past phase 1 it means that tolerance and safety has already been tested. Why not let those needing the drug just take it? I mean the world terminal is pretty definitive. A great flaw we seem to have is trying to protect pharma too much.

I work a lot with pharma companies and understand they are in it to make money but where do dollars vs life get compromised?

Anyways everything else is fairly good. I’ve taken a step back in my compulsion to micro manage at work to limit my stress a bit. It might be causing more stress until everyone picks up the pieces but I’m going to force myself into setting life before work. That doesn’t mean I’m quitting my job. Contradictory to most other people I really enjoy work. I enjoy the rush, I enjoy the control, and I enjoy making things happen. On top of that I just like winning. What I do mean is I’m cutting out the 60 hours a week and the high stress. My body reacts so poorly to it that it takes days to recover. I’ve had a rough month or so and feel like it just drained me.

On the other hand, I fight to be energized outside of work. It’s one of the few things I have left that isn’t limited by what I can do physically. I struggle with yardwork which I loved and we just sold the boat due to it being too hard to use/maintain. Balance will be the key until I find a new hobby though.

Most likely I need something new to tinker with since golf, boating, etc. are out the window. Ideas welcome! I’ll try to update these coming weeks as I proceed with the trial. Doing a lot of praying between now and then so if anyone else wants to throw one out there I wouldn’t hate it.