Apr
15
My happy high continues – fed in no small part by each new boisterous comment from you, my indefatigable invisible friends; my rag-tag scrappy support crew; my beloved cross-section of the very finest stuff on earth!
Last evening, in a room flooded with sunlight, my husband and parents and I drank champagne on my bed while Georgia clambered around excitedly, flailing limbs and causing repeated near-spills of the precious elixir. (Luckily the French have special Jedi reflexes when it comes to champagne spills: my husband’s hand would automatically and deftly stop the falling bottle from hitting the floor before any of us anglos even knew it was in danger. Mais, bien sur.)
The colour returned to our faces, and it wasn’t just the bubbles at work. None of us had realized the extent of our dread. No one had wanted to admit just how much fear we were living in, so we just kept buggering on, as Churchill would say. And then this news! This gift! There was much laughter and shaking of heads in happy disbelief.
Only four adults and one little whirlygig, but the bedroom seemed somehow more crowded – I surmise that there were a lot of people with us in spirit. Thank-you for sharing in our joy. I also have a sneaking suspicion there was a spike in the collective tippling of this bog community last night – and why not? It’s not often we get a chance to celebrate these days. And one must warm up from time to time in preparation for the big party at the end of all this (when the cancer is just gone.) But in the mean time I’m considering the wisdom of always keeping a bottle of champagne on-hand to encourage more reasons to celebrate to come my way. Can good karma be bribed with champagne? Worth a shot.
Apr
14
THERE IS NOTHING IN MY BRAIN!!!!!!!!!!!!!! EXCEPT MY BRAIN!!!!!!!!!!!!!!
The MRI came back clear! I can hardly believe it (especially as I have a gigantic headache aura as I type this) but it is the best news ever!!
I’m giddy, I’m elated, I’m relieved… I’m stunned and thrilled. Hope - that fickle flame - has been reignited and doused with gasoline! The champagne is chilling in the fridge; when my husband gets home (and once we stop hugging and crying) we’ll drink to healthy grey matter! Could there be a better, happier toast?
Detroit here we come! Nothing in the brain means I’m getting on that train!
Mar
15
My life is still reverberating from the act of talking and writing about the idea of my own death. Reverberating in a good way. It feels like something happened to the weight and girth of the subject; like I can get my arms around it and shift it to a more comfortable place, instead of just feeling crushed by it. When it was just in my head it was menacing and bullying – but when I talked about it with the people I love it turned out that my private hell was not mine alone. My fears became our shared fears (sorry about that) which allowed us to feel like we could at least face them a little better because we were facing them together. It was the equivalent of throwing fear in the dryer for a couple of hours: shrinkage ensued.
And then, there we were, my parents and I, sitting on my bed one night talking about it again for maybe the third time in as many days, and not even crying that time. Or, there I was, dropping it into a conversation almost casually: “…because if I die while Georgia is still really young I want to try to make sure she won’t turn it around and make it her own fault, the way kids think its their fault when their parents get divorced.” And there I was, yes, blogging about it to the world at large.
(Okay, seriously, blogging about it… Do you have any idea how naked I felt? It was like streaking through a stadium – although this little world of my blog actually seems far more intimate, so maybe it was more like streaking through a house party. But, still. I dare ya.)
It turns out that this unbroachable, unhappy, unfathomable topic is not so totally taboo after all. I’m not saying I’ll be bandying it about at cocktail parties (“Nice to meet you. I’m afraid my cancer is going to kill me and I won’t get to live out my beautiful little life. Have you tried the stuffed mushrooms?”) I’m just saying it’s more manageable than I thought it would be. And based on the feedback I’m getting, I’m beginning to think that talking about it has possibly made this nightmare a little less nightmarish for everyone else, too. Talking about it means that it’s okay for people to think about it; they’re not betraying me or failing to have enough hope if the idea of losing me enters their minds.
Anyway, it feels like I travelled a long, long way last week, from a place of fear and darkness to a place with at least enough sunlight to keep a small houseplant going. A huge part of it has to do with identifying a clinical trial and getting a plan for treatment underway. This is undeniably true. But I also attribute the return of my battle-scarred optimism about my chances of living to getting the subject of dying off my chest.
Who knew it would be so liberating? And can I continue to address it without becoming a freaky goth person? Because after the initial gruesome confrontation – after the first time I said the words out loud – it became easier and easier to talk about. Which meant that it was no longer necessary to try not to think about it. Which meant, paradoxically, that I and those around me thought about it less.
Like my friend Eden pointed out, it’s kind of a relief to be talking about it now when we don’t have to. Better we face it because we choose to and not because it’s being forced upon us.
In other words, I’m not dying – I’m just talking about it.
Feb
25
First the good news: Although all CT scan results are not yet in, so far there is no evidence of metastasis in the bones. It could very well be that the rib I cracked this morning (with one big hearty cough-sneeze combo at breakfast) is just a “cough fracture.” But it hurts like hell, so you’ll forgive me if I’m a little stoned on pain medication as I write this.
And now the bad news…in fact the worst news we have received since my diagnosis almost 2 years ago:
The nodules in the lungs have grown and while some lymph nodes have shrunk, some have enlarged and there are new ones in the space between my lungs. All of this means that it is official: my cancer does not respond to standard chemotherapies. Actually they’ve tried all but one, and they’re holding that in reserve for now. Better I try some experimental treatments, they say. Better we find a clinical trial, they say, though they don’t have one in particular in mind right now.
I am simply devastated. I feel desperate and frightened and angry. Nothing has been able to stop this cancer, and I fear that nothing will. I feel mystified – utterly and completely – by the idea that something so ferocious has made me its target. I am simultaneously on the kitchen floor, under the duvet and wandering around disoriented and underdressed in the blizzard.
There have been a lot of tears today – a lot. My husband and I have instinctively been no further than a few feet apart at any time since receiving the news, as if we are afraid that this cancer well and truly means to separate us. The invisible tentacles of my parents, my family, and my friends have reached out through phone calls, texts, e-mails and general vibes of love, weaving a kind of blanket of collective protection around me. And my daughter? Oh, my baby. That’s the hardest of all. I can’t even look at her without thinking, I just want to see you grow.
Feb
24
I had a call from my oncologist’s office: I need to come in tomorrow to talk about the test results. That means the CT scan results were turned around very quickly… and it doesn’t bode well that we need to meet immediately to discuss the results.
I’m doing everything I can to hold it together – especially since Georgia is home with me today – but basically I’m a mess. Axel came home during Georgia’s nap time and found me upstairs, lying on our bed. He just put his arms around me and told me he loves me. He had to go back to work, and now I can hear that Georgia is awake, so I have to snap out of this paralysis and back into life with my little girl, but I feel like I’m in a trance watching someone on the outside go through the motions while on the inside I’m frozen in fear.
Keep those ice picks handy.
