Early in October 2014 I got a headache that would not go away.
My beloved and I were driving to a long-weekend advanced relationship event near Palm Springs when it started. I was pretty excited about the event, something I’d looked forward to for several months. I chalked up the headache to suddenly running out of a certain medication I take.
Except the headache did not go away. Even when I took Tylenol or Advil. I felt tired. My sexy weekend became a self-care weekend and I spent a lot of time warming myself in the desert sun and basking in the hot tubs. All well and good, but what about the headache?
The following week I had an MRI. Recurrence of brain metastases. In other words, tumors re-grew from where they’d been previously treated by Gamma Knife radiation. Dammit.
Then followed a nerve-wracking week wrestling with California health insurance. Turns out Medicaid isn’t cost-free to the patient here in California. Nope, they think a person can live on $600 a month, so anything you make over that (say, from Social Security Disability) you have to give to doctors and hospitals every month if you get medical care. Huge burden for us. Dammit.
So we made a calculated brave and risky choice. We decided to wait out the month of November while I did ALL THE CANCER THINGS, to give my body and brain a chance to reduce the tumors and avoid what the doctors were telling me I’d probably have to have — brain surgery. Dammit.
I did not want brain surgery. Cut my head open? No thanks. Also, I was really fixated on a fear of having to have my head shaved. Like that’s my biggest worry. But still! Would anyone love me if I didn’t have hair? This was my fear. (No worries, I’ve solved that one now.) Dammit.
So here it is December and like we planned I am seeing a basketful of doctors — neurosurgeon, radiation oncologist, immunotherapy oncologist. Plus, another brain MRI and a CT scan of my abdomen. Let’s get a really good picture of what we’re working with, shall we?
Yesterday I had the brain MRI.
I’m going to file this one under Bad News. Totally open to the silver lining, though, or eventual good outcomes. But jeez.
Six weeks ago there was a badass biggish tumor and a wee little one.
Now, not only did the two tumors NOT reduce in size, but the biggish one is more defined than six weeks ago. And they are joined by a third tumor that just popped up — also pretty big — since six weeks ago. Tumor party!
Biggish tumor is in a difficult-to-treat area. It can ONLY be addressed with surgery (the cutting-a-hole-in-my-head kind) because radiating it runs a huge risk of making me blind in probably both eyes. The tumor sits just forward of where my optic nerves cross. Plus, if we wait too long before surgery, there’s a high risk of blindness anyway because the tumor would continue to grow and put pressure on the optic nerves.
The new tumor is also in a difficult-to-treat area. It’s just behind the space where my optic nerves cross, and just forward of my brain stem. Getting too close to the brain stem either with radiation treatment or tumor growing could cause all manner of unwanted problems like paralysis, breathing issues, etc.
Today’s doctor was a radiation oncologist. Tomorrow I get my bonus CT scan to check progress of my abdominal tumors, and we meet with another oncologist to see about immunotherapy. Then Monday we see a neurosurgeon about the actual surgery and will make choices from there.
So far it sounds like they recommend a three-pronged approach:
1. Surgery. Cut the biggish fucker out.
2. Radiation. Treat the cavity from cutting the biggish fucker out, plus zap the other two tumors. Probably in a series, not all at once. [silver lining! they don’t use the Gamma Knife machine I had before that requires a metal frame being screwed into my head]
3. Immunotherapy. My kind of cancer (melanoma) is really responsive to some newish therapies that aren’t chemo.
So how do I feel with all this?
Numb. Like it’s happening to someone else. Is this a self preservation technique?
Scared. So fucking scared. Scared of being in a hospital, of having surgery, of having a fucking hole drilled into my head, of trusting doctors, of being away from my beloved, of going blind, of never seeing my kids again, of not making it through surgery, of all the unnamed unknowns.
You know, I’m writing these words but I’m still not letting myself really feel them. Maybe it’s just too big still. I don’t react well to change. One bite at a time.
Should I be throwing vases at the wall? Tearing handfuls out of my hair? Screaming the words to Bohemian Rhapsody at the top of my lungs? What is the etiquette for “probably having brain surgery soon”?
My beloved says this is a blip. A pretty big one, but nonetheless a blip. I like hearing that. I’d like to believe it. It makes me feel better, knowing he said that. (This man deserves an Awesomeness Medal)
Mostly, I’m tired. Tired of Doing All The Things. Tired of climbing this mountain. Tired of not being able to do things most people probably take for granted.
I’m not brave or courageous. I’m just climbing a fucking mountain. It’s just one step and then another, and choosing to not stop.
Hold me close, please. I’m so thankful for this great big world and for all of you.
Much love, as always.