Thursday, September 20, 2012

Do Not Go Gentle Into That Good Night*

Coming on the heels of two fairly self-centered blog posts in a row, you may take pause at my sincerity, but various events of this week have served to re-focus me on what actually is important.
Hopefully, in your perusings of this little blog, you've read the Life for Lily Virtual Run page, and, even more hopefully, perhaps you'd decided to participate and make a donation to help Lily.  And I have to tell you that if Lily's story tore your heart out like it does mine, you need to read on.  If Lily's story didn't tear your heart out, that's OK, but you need to read on, too.
As I noted in my posting on that page, this is Lily's second battle with alveolar rhabdomyosarcoma (ARMS), and the family has chosen not to pursue traditional chemotherapy and radiation treatments this time.
The thing is, there aren't other treatments out there.
And in fact, there aren't that many chemotherapy treatments for Lily, either, seeing as during her first round of it, she reached the lifetime limits on many of the drugs that are used to combat ARMS.
So what IS out there is "experimental," at best.

Rage, rage against the dying of the light.

Alicia told me today that there are few, if any, alternative treatments for pediatric cancers.  Why, I don't really know; she told me something about how most of the medical community told her they didn't want to risk using kids as guinea pigs, but considering there are plenty of "clinical trials" for various chemotherapy drugs, I am tempted to scream "BS" in all its letters at the top of my lungs at anyone who  made that argument.
What's worse is that because of lifetime limits, etc., recurrence of more rare pediatric cancers such as ARMS, the prognosis overall is not good (I can't even tell you how mildly that's putting it - I have no words to actually articulate the negativity surrounding these prognoses).
Basically, during our conversation, Alicia said that there are members of the medical community who have told the family that they can try to treat Lily, but they should not expect any miracles.

And a miracle is what it's going to take.

Do not go gentle into that good night.

Well, I'm sorry.  I am not really one to resign myself to the impossible, so here I am, looking for that miracle.
This is the part of the conversation in which we talk about accepting The Plan meant for us.  Knowing that Our Plan is often different from The Plan.  Which is rather a departure, as this realm isn't really something I have ever discussed here.
Here's the thing.  I KNOW that sometimes the answer to a prayer isn't the one that I'm looking for.  I can sit here and tell you with every ounce of rationality and logic that I have that despite my grief at losing my own dad, his death made me a better person and served to point me in the direction of fundraising for colon cancer and advocacy of blood donation.
But when Logos Allison comes up against Pathos Allison, there's nothing that can be done to satisfy Pathos Allison.  She's pissed off, and you're going to hear about it.

Rage, rage against the dying of the light.

I can accept The Plan at some point, but that doesn't mean I accept it now.  If I accept The Plan right now, that means that I stop.
I just... stop.
What would be the point of continuing to ask, urge, beg, petition, entreat, and beseech you to sign up for and make a donation for the Life for Lily Virtual Run if I accepted The Plan right now?
I GET IT that there is a finality for all of us.  And that finality can might come suddenly, and it might be stretched out over time.  We might know it's coming, and we might never know until it happens.
But those final hours aren't here yet, and I will not stop seeking that miracle.  Giving in to The Plan doesn't mean giving up, and so HERE I AM, looking for a miracle

Do not go gentle into that good night.

Will you signing up for the Life for Lily Virtual Run make a difference?
Will it cure her cancer?
Probably not.
But it can help bring relief to the pain she is feeling.  It can allow the family to make better use of their time together.  And can ensure that the plans the family is making and will be making are able to be seen through.
And that's a big difference.
We never really do know what or when a miracle will occur.  We just have to keep working for one, looking for one, praying for one.  I will accept The Plan, but right now My Plan is to fight it.

Rage, rage against the dying of the light.

Yes, I suppose you can tell me that I'm just in denial.  Maybe you might wonder if I'm not unintentionally hurting Alicia and her family in some way in refusing to accept Things As They Will Be.
Dear God, I pray that I'm not.
I pray that my actions may help reduce the suffering of others.  Somehow.
And of course, that miracle I've been mentioning would be good right about now, too.

Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Photo: Dream Lenz Photography

*"Do Not Go Gentle Into That Good Night," Dylan Thomas (originally published 1951)

1 comment:

  1. I hate cancer. Hate it. I know it can be killed. If Lily's folks have said no to the traditional stuff, maybe some out of the box ideas could be useful to them. I share this page and the book w/everyone I know who either has or knows someone who has cancer. They can make their own decisions, but I can tell you this: if I ever am diagnosed, I will follow these rules, not big pharma's. Not corporate hospitals. Not the cancer machine. these rules: Share this with your dear friends, or not, but I cannot ever *not* share this. I believe it offers hope in even some of the most hopeless cases. I am not a crazy person. Well, only a little. I will be thinking of you all and praying for Lily and her family.