It's a go

I heard from the clinical trial nurse yesterday and the Regorafinib study is active and accepting guinea pigs, aka subjects. (Incidentally, I continually write clinical trails, which is ironically accurate because the act of participating in a study is following the path less traveled and unexplored. But I digress.)

After talking to the nurse, A, yesterday, I felt a weight was lifted from my shoulders. I have a clearer direction. I will soon have action. It drove me absolutely crazy to be stuck in limboland with my port stuck in my belly, discomfort rippling through my body and my thoughts careening around this dark, murky world of the unknown.

I received a fax with the study protocols, which I examined last night. My initial reaction: Holy cow, this is dangerous - and some of that invisible weight piled back on my shoulders. Like the little white rats in the lab, there's a risk of death with the study drugs. Five people died on regorafinib (as of October 2010, over 500 people had taken it). There's approximately a one per cent chance of dying because of the study drug. The paperwork also warns about heart problems reported with one of the test drugs that I could be taking (depending on the arm of the study on which I'm placed).

Of course, every reaction, side effect, potential outcome must be disclosed in the paperwork. So it's everything that could happen if I choose to be part of the study. Generally, I'm healthy - except for this darn, stubborn cancer - and I can take all kinds of drugs and foods without side effects. In a way, I'm the ideal guinea pig. And the only alternative is another round of chemotherapy, which is effective only short term.

The serious, dangerous tone of the paperwork gave me pause. I have questions. I need to draw up my pros and cons list to ensure I'm following the right path for me. I'll take time to converse with the big guy upstairs. Despite hating limboland, I'm now scared to move forward and afraid to stay where I am.

My poor little brain is going to get a workout over the next few days processing the information and coming to terms with it. I have one week, because next Tuesday I head to Hamilton to sign the papers, talk to the doc and get my CT scan done to see if I have a qualifying, measurable tumour.

Deep down I know I'm going to do the study, despite its risks, because I don't really have a choice if I want a fighting chance.

Rock, hard place, little old me.

Tina