Eeeeeek.....not feeling so hot

This day has sucked from the moment I opened my eyes.
Strike 1: Izzy slept with us last night and did crocodile rolls ALL night.
Strike 2: I woke up at 5:30am so I could actually be on time for my infusion. had my 2nd infusion today at Mayo.
Strike 3: I didn't make it on time because traffic issues caused the normally 2-hour trip to take 3 hrs 45 minutes.
Strike 4: the nurse had to stick me twice because my veins weren't cooperating
Strike 5: rolled down the window of my Ford to pay the parking garage fee, and then the window wouldn't go back up again.
Strike 6: it was -2 degrees (I did end up finding a service station where they were able to get the window up)
Strike 7: I drove 2 hours back to Hudson, WI, met my coworker, and then spent another 5 hours in the car to drive to Milwaukee
Strike 8: I reserved 2 rooms. They only had 1 under my name (luckily, this was also fixed)
Strike 9: I ordered a Caesar salad from room service, and they put 2 whole anchovies on it. It's now a fishy nightmare, so it looks like I won't be eating dinner tonight
Strike 10: I'm SO terribly nauseous and shaky. All I can do is lie in bed and chan scan. However, I need to work. I won't, but the guilt is there.

The only good things about today are that I made it everywhere safely, and I brought my heating pad and sequential compression booties. Score 3 for me.

Gawk, I hope I feel ok tomorrow.

Last clinical trial appointment and a new drug....

It kind of all started with this article that was posted by a friend of mine in my facebook group:

http://www.sciencedaily.com/releases/2013/11/131108153524.htm

So, you look at those numbers and you start to weight the odds.  5 people really isn't many, but you have to admit that the results are intriguing.  I had made a note to discuss with Dr. F when I had my next appointment, but he actually called me the week after this was posted and asked me if I wanted to try it.

This made me happy because that means he's truly current with what's going on out there (not that I really had any doubts about this one, but still nice to have some confirmation) and that he's truly looking out for me when things like this come up!  I researched what I could find about the drug, and the side-effect profile is really low, so I figured "why not"?

My first infusion was last the Tuesday before Thanksgiving.  Everything went really well...completely uneventful.

As part of this visit, I had my last official clinical trial appointment for the study I've been participating in.  I was also able to get some labs done...here are the results:

Potassium:  3.4mmol/L (this would explain the AWFUL leg cramps I've been having)
Creatinine:  1.6mg/dL
eGFR:  36
Albumin:  1.5g/dL (yep, still swollen)
Protein:  12000mg (predicted, as it wasn't a 24-hr collection)

It's good to have some baseline numbers to see if this drug will work.  The plan is to do an infusion on day 1, day 15, day 30, and then once a month after that.  I have another infusion tomorrow morning.

Since this is an immunosuppressive drug, I need to be a bit more careful again.  It's been awhile since I've been on one, and I forgot how they can make me feel.  Drained is a pretty good word.  And I've instantly gotten sick....no idea what this will turn into but it feels pretty darn crappy right now.  I'm really worried as I never had time (or kept forgetting) to get a flu shot, so I'm terrified.

What sucks more is that I KNOW I need to rest, yet I can't.  I have to drive to Mayo tomorrow for  my infusion, then drive back to work, pick up a co-worker and drive to Milwaukee for 2 days of business plan planning and presentations.  I'm not up for it.  I just want to lie down.  And these next few days will do nothing in the way of helping me get better.  What's worse is that I truly don't believe my employer understands the precariousness of my health, nor do I think they care all that much.

I miss working for my former employer.  They were with me the entire time through this diagnosis, and they completely understood and supported me.  You don't realize how truly wonderful and stabilizing that is until you no longer have it.

Everything seems like one big chore right now, and I just don't have the energy to get it all done.....wish me luck over the next few days that I don't get sicker.