Clinical Trial: From the big room to the little

 I went up to the fourth floor of the medical building, where the oncologists office is located. I signed in and waited to be escorted to the infusion room.... a room I was all too familiar with. The smell in that room still makes me physically sick, the chemicals, antiseptics, alcohol... etc.... just brings back so many memories... ports, saline solution, the red devil..... you name it. I can barely walk by that room without wanting to throw up.

But on this day I wasn't taken to that room, instead I was escorted back down the hall, into a smaller area where every patient had their own small room for their infusion. So this was it.... my last two experiences with metaplastic breast cancer I had been grouped with all the others, in the big room but I had graduated to my own special place. All alone. I am now a special case.

Don't get me wrong, I am eternally grateful (at this moment) to have been accepted into the PDL1 clinical trial (MEDI4736).

This drug is substantially the same drug that saw so much success with melanoma that it was fast tracked by the FDA. Seems great but the frustrating thing is that the medical definition of success is much lower than my own. There is still a better than 50% chance that this drug will have no affect on me at all. And, they are not offering me a cure, it's still just an extension of life. But I am chosing to see a miracle. Someone has to be the first miracle.... why not me?

So there I sat in my own little private room. While I appreciate the comfort of the privacy and attention all on me, I also recognize that this is the end.... the last room they have for me.

Just like my grandpa who went from his own home, to a small condo to a single room.... the world is getting smaller. For now the tiny room will do but here's to success and hoping that the little room does the trick and opens up the rest of the world to me again. 

The Happy, Happy, Joy, Joy bandwagon

It's kind of tough NOT to jump on the Happy, Happy, Joy, Joy bandwagon. It seems like everyone I know is fully on board. And when I say on board, I mean both feet, buckled-in. No hanging off the sides, ready to jump off at a moments notice. No, my friends and family are on for the long haul. After all the Happy, Happy, Joy, Joy bandwagon is a fun place to be..... and in their defense they want to be there, they don't want to think of the alternatives.

"The wheels on the bandwagon go round and round,
round and round,
round and round,
The wheels on the bandwagon go round and round,
all the live long day.

The clinical trial will work, work, work
work, work, work
work, work, work
The clinical trial will work, work, work,
all the live long day.

Maria's going to beat 'this thing'
beat 'this thing'
beat 'this thing'
Maria's going to beat 'this thing'
and live the live long day."

I have to admit, I find myself sitting on the bandwagon all buckled in and singing a long a lot. Why not? There is always a chance, right?

But then I go to the head CT, the lung biopsy, the chest CT... whatever is up next, and lying there alone, my eyes well up with tears. I try not to let the tech see but sometimes the tears roll down my cheeks and I can't catch them in time.

I can't hear the music, there is no bandwagon. There is only me, walking alone because that's what dying is.... something you do alone.

The music is replaced in my head by the sound of the doctors voice. He says just one word, "incurable." There must not be a dictionary on the bandwagon because I know some of the people on the bandwagon heard the doctor say the same thing. Maybe they don't understand? I ask the doctor one question about the trial, "Is the intent curative?" His answer is again one word, "no."

Of course then the dawn breaks, or the scan is over and I quietly try to climb back on the bandwagon. The people there are so nice. They just want to be nice to me.... but I worry that avoiding thinking about the truth will just make it harder. I have to be ready now. I have to know I didn't leave anything unsaid. The others will still have time to say what they need to say.

I do have hope but I need faith... I need God... I need to know that even when the bandwagon stops and the music is gone that it will be alright for me.