PHA-848125AC

That combination of letters and numbers is the code for the clinical trial that I am finally in, after 4 or 5 tries. I shouldn’t actually be in it; my liver enzymes are still about three times what they should be, but Dr Giaccone got the ok from the drug company in Italy. They made an exception. It seemed like my liver enzyme numbers had been dropping, but I MAY have jacked them, unwittingly. Well, wittingly, but I truly did forget. Red wine, i.e. alcohol,  can make the liver enzymes rise like the good time it usually helps create. I might have been to a birthday party two nights before my blood test, and I might have had a bit of my favorite Pinot, Meiomi (Meow-mi!). And I might have had more wine the  night before the test before realizing, with some amount of horror what I’d done. This is what happens with 4-5 weeks out of the trials routine. Amnesia. Anyway, Dr Giaccone says the wine may have raised my numbers, but at the very least, “didn’t help.” I was afraid he’d say that. Now my self-imposed sobriety has a bit more validation. Yuck.

This trial is two pills, once a day for seven days, then seven days off ( “drug holiday.” Hahaha), then back to Georgetown for bloodwork and to pick up the next round of meds. They have to be refrigerated, so they are in my carry on bag right now on dry ice. I have dry ice, drugs, and an assortment of needles in my bag, and the TSA didn’t flag me. But a 4 oz tube of toothpaste would have jammed the security line all up. Go figure.

This drug,  miciclib maleate, doesn’t have nearly as impressive a list of side effects as my last two. But they theoretically could work together to make a pretty horrific picture… At least they could in Patrick’s brain. The most common side effects are gastro-related: Nausea, vomiting, diarrhea. Then there’s the ever-present fatigue. And the all-new ataxia. That’s some kind of short circuit between your brain and your muscles. Dr G says maybe you want that cup of coffee and want to get it, but can’t move. Great. First Diabetes, now paralysis. I have to have my eyes checked regularly in this trial, so I’ll probably go blind, too (joking, darkly). So the way Patrick figures it, I’ll have some tragic gastrointestinal event (take your pick), and I won’t be able to get out of my own…. way. He finds that hilarious. But don’t forget, if he has to rescue me with my Glucogon shot, I will puke all over him, probably. Ok, enough with projectile everything.

If I don’t get Sordid Side Effects, the toughest part about this trial will be the timing of taking the meds. I have to take it 90 minutes to 2 hours before breakfast. That is a challenge, as I usually get up before 6, grab quick food and head off to the gym or Athletic Republic or the pool or the mountain. I have to set an alarm to get up out of bed in the 4 o’clock hour to take meds, then go back to bed. You should have seen the first morning I did that. The kid-proofing on those bottles was almost more defiant than I am. I was struggling with the bottles, Tiger the cat was meowing his head off with anxiety watching me, and I was sure I was going to have to wake someone up to help. I prevailed, but definitely did NOT go back to sleep.

My Diabetes isn’t going away. After My Diabetes doc cut my insulin doses, my blood sugar has been steadily high. I’m pretty sure that when I am actually in the office, they will HAVE to answer my questions and will probably bump my dose back up. Meow. But can I say this to any doctors who might be reading this? An issue may not be important to you because you have lots of patients or because it’s really not that big of an issue. But you and your office are the only conduit we patients have to wellness or healing or addressing specific medical problems. Return the call. Answer the email. Don’t rush me off the phone with some vague directive about changing dosing. I like to think of us as a team, and good communication is key. Plus, I am a reporter by training and I will call you and email you and call you and email you and call you and email you until I get what I need.

I don’t know why my Diabetes won’t go away.. No, I didn’t eat (much of) it. Kafe Leopold, Georgetown

So now, after three great days with my family (they actually had time  to miss me this time. There was no “You again?” Just kidding. There never is that. Out loud), I’m heading back to snowy Park City for a week and a half. As much as I loved my sabbatical, I will say it’s comforting to be back in a trial and actually doing something that might stabilize my disease. Dr G and I were so consumed with getting me into this trial that we didn’t even remember to look at mt CT scan results til today. Some of those bad boys are still growing, though still slowly. The biggest tumor is just over 3 cm now. So, as Dr G said, it’s a good thing I’m starting a trial. Defy!