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.
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!
Maxine Jimenez
Youhoooooo. .there you go..you are in..GREAT!!!..now ..let’s be in that 10%..GO GIRL…I AM PRAYING FOR THAT….healthy wishes to you…..Maxine
Brad
you are such a total inspiration to us….. a constant reminder of what a warrior is, and a great source of bringing perspective to my life in many ways…. you are the real deal…. not only dealing with cancer day to day with a drive to conquer, but a commitment to knowing everything there is to know to make the best decisions out there…. wow,wow,wow….. love and hugs from Brad and Phil
Vanessa
Wendy, I lift your name up to the hightest of high for a successful experience! You can do this Wen!???????????????? Love in my heart for you always!
Vanessa
Shirley
You have certainly been through it! I am so inspired by your attitude. You remind me so much of my friend who is on this journey, trials and all…Through it all, she has had a real, “Chin up” mentality, and, I swear, it is what has keep every one of us who love her from, hurting beyond hurt…If positive energy helps as much as sincere prayer??? Know that you have both from me…God bless you Wendy…
Bobbi
Wendy….. We are praying for you! Keep the faith!
Scott
My thoughts and prayers are with you. I think I met your dad years ago at a Seabees ball here in Orlando.
Great man.
Sandy VanCleef
Wendy,
Your blog was shared on Facebook, and I was so happy to see your face. We sure have missed you here, in Florida. (I’m in Daytona) I’ll be following your blog going forward. I wish you all the best! I truly admire your strength. You are an inspiration.
Dede
I just found your blog, Wendy, and am so sorry to read what I have regarding the cancer and diabetes.
You were always an inspiration to so many here in the Central FL area, when we were truly blessed with you covering the news at WESH. I always looked forward to your anchoring, as journalism was my first major, and you were the very BEST at it.
I am so happy to see that you aren’t letting anything bring you down. You are nothing short of amazing, and always an inspiration.
Sending many prayers from Central Florida. We STILL miss you!
Joan Lipsett
Wendy, so happy you are doing well. You are such an inspirational!
Praying this new trial will cure you! Miss you! So glad to find your
blog on Marc’s Facebook
LAWRENCE EISIMGAR
Hey Wendy,i’m very greatful for the work you are doing…its really inspirational…..but my cmmunity in Kenya in Marsabit County,many are dying of cancer becoz poor waste disposal by oil drilling Companies,yrt nothing has been done…pls google the desert of death.and you will cry.i hope you rescue and give support to these poor Pastrolist Kenyan.Through you org.standup4cancer.am waiting your reply.thanks