Monday, November 27, 2017

clinical trial, day one

today was a long day to put it mildly.

we got there just before for my litocaine injection, to have my port needle put in, and initial bloodwork.

we then met with the doctor and the clinical trial lead. they had forgot to tell me that i had to fast before coming in today. luckily i had not yet had breakfast because we usually eat there after my bloodwork and because I could barely get myself out of bed this morning i was so tired from a long night of nightmares.

so we went over more specifics on the trial.

i have to take 8 pills a day, in addition to all of the other ones i am already taking for my anxiety, lack of potassium, swelling, etc.

4 in the morning with breakfast (and it has to be a real breakfast, not a muffin as I run to the car).

4 in the evening with dinner (same drill as breakfast).

i have to write down the time and date of all the pills i take and if for some reason i miss a dose. i have to tell them if i have any issues or something seems off. i got my number, my number that will track me through the trial.

they say that the most common side effects in the first month or two of the new drug is that patients have problems with their eyes. bright colors hurt their eyes and colors seem off to them. they say the eye issues eventually fade and then fatigue is the number one offender which is already my number one offender. so we shall see how it goes.

after we got through that, they got my infusion moved up from 5pm to 1:30pm (or we would have likely been sleeping there it felt like). it seems that from now on my appointments will all be late in the day as the clinical trials have their own time slots and wing on the infusion floor so my normal schedule will shift from mornings to afternoons/evenings.

finally when the infusion started (around 2:30), i was able to eat. i was starving by this point. when that was over, an hour later, i took my new meds. then i had my iron infusion which lasts about 30 minutes. after both infusions, they flushed my port which takes about 10 minutes each time.

then we had to wait 2 hours after when i took my pills so they could do an ekg and make sure that my heart was normal compared to the ekg they took before i started the trial. 

it was so they let us head out at 5:45pm.

hence the long day.

for a while now i have tickets tonight to see pete souza talk and show pictures from his new book with some friends. it was amazing to see those pictures and the stories behind them - we saw just a glimpse of the 1.9 million pictures he took during those 8 years. incredible. the book is absolutely gorgeous.

so i could have headed home and gone right to bed because i honestly was that tired. but i decided to go anyways because i had been a cancer patient for about 10 hours, and for just a few hours i wanted to just be alli. i guess i also wanted to give out a little "f*&k cancer" vibe to the fates and keep the plans i had regardless of a day that kicked my ass.

so now i am home, writing you all this update on the day, and now headed to bed which sounds pretty damn good (minus the nightmares that i am sure are waiting).

thanks for all of the love, prayers and good vibes for today - i needed them and carried them with me. today was not an easy day by any means emotionally or physically, and i needed all of the mojo i could carry with me. 

anywhere i fight, you fight.

rest up, we are back at it in two weeks to do it all over again.



  1. Totally get you. I'm glad you could be Alli with friends. It was another special night!

  2. Holding you and your family in my heart! Fight, fight, fight!