The Long Angry Road

Very early this year mom was accepted into a clinical trial after ending 2013 deflated, having spent the greater part of a year taking Oral Chemotherapy that was no longer keeping the cancer at bay. The bone mets in the base of her skull were permiating her brain. It was a very scarey time.

Mom endured radiation therapy to her brain late last year, that is believed to have done it's job, all but eliminated the cancer that was permiating the brain. She then had a break from all treatment for several weeks before her clinical trial began. This afforded her some semblance of a holiday season as what was left of her hair fell out for the second time in her life. She weathered the loss like it was the most  normal thing in the world, but the hurt and fading confidence could be seen in her eyes. In those fleeting moments when she might have wondered if people were looking at her head as she self consciously brushed her hand accross her scalp and tucked the few remaining locks behind her ear. I wonder why she doesn't see her courage, the lioness I see in her.

It's very clearly there, it glows in the light of her Sea Glass eyes and in her smile. Every once in a while it shines like a beacon in the the night. If one looks closely, they get a glimpse into her soul. She has faith, somehow she believes that there is a plan for her. It was then, a very hopeful NEW year. Mom was accepted into a clinical trial and that was promising.

But, you see, I don't have that faith, faith is my struggle. I lost it sometime ago and though I long for its return, the comfort it brings and the letting go, it is lost to me still. It's weeks like this past one where I could benefit most from something bigger than me. Bigger than the grief and the loss I feel every time we hear the words: The cancer is back...It's End Stage...This treatment is no longer working...The clinical trial is no longer a fit. Instead, I am an actress in a gut wrenching walk through life as the daughter who smiles and says all the right things whenever one gets the courage up to as me how my  mother is.

Honestly though, sometimes I really want to say - Gee I don't know, she's dying, literally dying of something that causes her terrible pain each and every day, something we treat with poison to prolong  her life and her time with us - Poison! She barely eats and hardly moves. She is alone, alone! Alone nearly every single day for hours. Except of course those days in which we sit in traffic for nearly two hours, followed by at least two hours of waiting in Boston and then another two to four hours of treatment - "Poison" and another one to two hours home. Did I mention that is at least once a week now, unless of course you count the weeks with scans - like this past week, because then it's two and sometimes three days of visits. But, no, no, no - I smile. It's all I can do and the truth is that I wouldn't wish the full weight of this on anyone.

Here though, I don't have to smile and I feel that in some ways I can let go of the disciplined control that I must have to continue on this path. Today I am angry. Today I have allowed the tears to flow and I have reminded my mother that no matter how hard it gets, I will be by her side. IF it is too much I want her to know that she can stop and I will still walk by her side, steady her and love her. Today I am beginning to accept that it is likely beginning all over again because on Thursday we were told that the clinical trial is no longer a good fit, the disease is progressing again. Slowly, but growth is growth and that means it is time to chart a new course. After today, I will find the courage to smile and to look forward to the possibility that the next treatment may be the right one, the one that not only prolongs my mother's life but affords her the joy of playing with her grandchildren without pain, that allows her to enjoy good food again and returns to her a little piece of the independence that has been taken from her.

I miss the fire in her eyes.

I miss my  mom.