AYNSLEY:
Chemotherapy is taking its toll. While yesterday morning was decent, the afternoon deteriorated and today was just bad all day. Mom was nauseous, vomiting and extremely fatigued all day. I spoke with her for a few minutes, when she told me she loved me lots and was hoping that tomorrow would be better.
Amen
I realized that though I was trained as a "scientist" (that's what that whole MS degree was about), I rely completely on anecdotal evidence when it comes to my life. I probably shouldn't be admitting this, as I do hope to build my practice and would love all the readers of this blog to someday hire me :-) Throughout this whole process, I have avoided internet cancer research like the plague. WebMD is notorious for making people crazy, but I haven't wanted to read any journals or research. But I crave case studies. I thrive hearing people's individual stories. Definitely the uplifting ones, the stories of patients who lost their vision, then got it back, of a Stage IV diagnosis nine years ago. But also people's tragedies. I don't mind investigating it in single servings. I devoured My Year of Magical Thinking and am waiting very impatiently for The Long Goodbye, where a poet chronicles her experiences with grief after her 55 year old mother dies of cancer (April 16th). I don't want to hear the statistically significant reports. I would speculate on that, but that's how I live my life. I don't research electronics to buy, I ask friends for a recommendation. I don't compare products or weigh pros and cons, I ask one or two people I trust and do what they suggest. So when the nurse practitioner asked if we wanted to know Mom's updated prognosis, I really didn't care. Up to this point, everything is a mystery-I think Dr. C. was a little surprised that the CSF is still cancer free. Getting an official prognosis isn't meaningful to me, at least at this point. What do we do with that? What if they tell us she has 2 years and she doesn't? What if they tell us she has 6 weeks? What do we do with that information? We've already taken the lessons that life is short, enjoy your time, tell people you love them, blah blah blah.
The staff yesterday really wanted us to communicate our goals and plan so we can move forward. Good question. What are the goals? Is "keep comfortable" too defeated? Is "cure cancer" too ambitious? Both are true. My goal is to advocate the loudest and best I can for whatever Mom wants to do when she wants to do it. If she never wants to go home again, I will block the door. If she wants to go home by June, I will talk the ears off every person who can help make that happen. It's not my job to set goals for my parents, it's my job to help their voices be heard. And apparently I have appointed myself as the chief communicator to all of Mom's many fans. That's a role I cherish and am honored to hold.
I think I'm rambling and suspect that this blog post is slightly (or more than slightly) incoherent. I apologize and will go to sleep now.
Dearest Aynsley,
ReplyDeleteYour post is anything but incoherent! It is as usual beautifully honest, from the heart, and as always a fantastic means of keeping your amazing mother's entire cheering network in the loop.
I think of Flynne daily and say a prayer.I can't thank you enough for being the "self appointed chief communicator". Your blog has helped in ways I bet you have yet to imagine or truly experience the depth of. At the very least please know that due to your writing you've enabled those of us out in cyberspace who don't have direct access to your Mom to send love, prayers for strength and healing and yes messages too.
On that note, oh "Captain Communication"(a feeble attempt at levity),I am charging you with the task of singing...not just telling, but singing to my dear friend Flynne. You pick the tune but the lyrics must be an ongoing chorus with MANY verses of "Ronni in LA wishes you every possible goodness in the world."
Again, I want to thank you Aynsley for writing this wonderful blog that I read every night and for giving me the opportunity to be a part of the huge cheering section sending love and energy to your mother.
Though we've never met I can't tell you how many times after reading your blog I've wanted to give you a hug..so here, consider this a virtual hug!
My love to your entire family,
~Ronni