I do not harbor wishes to survive
To be upon this earth only alive.
I wish to thrive.
To revel in the pinnacle of incandescent heights,
The vertiginous flights above the shadowy abyss.
Sometimes touching down in a deep, dark place,
Which elevates, enhances,
Illuminates the bliss.
What I wish is this.
Those waiting with bated breath along with me will be relieved to know that my spinal cord is perfectly normal. Dr Jason has actually suggested doing a PET of the brain, as well as another full-body PET, sooner than Dr Specht had initially suggested for the next PET. That is, doing the PET in the next week or so, before we go to Japan, as opposed to the end of March or April.
As I've mentioned, a PET of the brain is not used very often, because a PET is measuring the metabolism of radioactive glucose and the brain sucks in glucose at a much higher rate than the rest of the normal body tissues, and so it's harder to see what's going on. In the case of a brain PET, they actually do two scans—one immediately, and one 4 hours later, when presumably the normal brain tissue will be less "still-radioactive" than any active lesions. And, since I have a recent MRI, they'll be able to cross-reference in their search for new activity.
The main reason for this test now is to see if there is, after all, any other brain activity that we haven't yet noticed—are any of the old lesions starting up again?—because the next good step is gamma knife, and while he's getting one spot, it makes sense to get them all. The gamma knife procedure is well-tolerated—"It's a long day," says Dr Specht—but nevertheless, it involves me getting four screws screwed through my skin and into my skull to hold my head still. While that sounds fun, it's not something I care to experience more than I have to. Wide awake.
I'll keep you posted!
I've still got some things I want to write about and show pictures of over on The Dilettante Traveler, but three weeks of suspended reality does not actually make reality go away, and it's time to dive back into I Thought I Was Done With This.
Actually, one order of business may be to change the name of this blog. One thing I've learned, over the past almost-eleven years, and more directly over the past couple, is that I will never be done with this. Cancer is not localized, nor is it finite. It is a systemic issue and, much as I don't like the idea that it can't ever be cured and be called cured, it really can't, at least with the information and the tools that we have right now.
And so, we watch, and we monitor, and we wait with bated breath for the next blip on our radar. While we're waiting, we're going about our lives because, after all, life is moment to moment, and most of those moments, at least for me, aren't focused on cancer. Most of my moments, because I am incredibly fortunate, are focused on travel to unbelievably exotic landscapes, horseback riding and doggy love, crafting and creating, sharing life with an unusually competent and comfortable and sweet man who is, in his mother's words, "a true gem," or in my mother's words, "an ANGEL" (emphasis hers). Most of my moments inspire me to gratitude, and I'm even learning to have gratitude for the ones that don't initially inspire it.
That said, our watching has caught something, a tiny new something, deep in the center of my brain. Something that in and of itself is not at a dangerous stage right now—it's maybe the size of a pinhead. It really looks like it might just be an enlarged blood vessel, or something equally benign, but it's been growing slowly and steadily for the last six months, while everything else in the brain stays put as it has since after the radiation treatment in 2008. The thing about this spot that is most concerning is its exact location deep in the center of my brain, which is on the edge of the left ventricle. The ventricles are part of the ducting system for brain and spinal fluid—and therein lies all the potentiality of this little dot. If the little dot is not contained in a vessel but is, instead, in the ventricle itself, it can slough off cells that, with the help of gravity, can find their way down the spinal cord and take root in places where even the smallest pinhead-sized lesion can damage really important nerves, like the ones that tell me when to piddle and when to stop, or the ones that tell me how to move my legs to walk up or down crazy-steep tropical mountainsides.
To see if anything's happened yet, I have a spinal cord MRI scheduled for this coming Friday, and I'll meet with Dr Jason afterward to discuss the results. If it looks normal, the next step, from what I understand, will be to have a spinal tap, possibly three separate ones, to take fluid and distill it and look for cancer cells in the fluid. If the fluid also looks normal, then gamma knife is probably the best idea. If either of these tests looks concerning, there are options for chemotherapy.
In the meantime, I'm going horseback riding tomorrow, for the first time in three weeks. I hope I get to jump!
