Wednesday, July 26, 2017

What's in your head, in your head?

Soooooooooo... ... ...

Most recent scan results are in, and game plans have been made. My body CT scan showed no evidence of disease in my lower body. Specifically it said that the tumor we most recently radiated a couple months back is now "necrotic." Dead and deader. Everything else seems to have stayed stable while I've been on this lovely chemotherapy break. Great news.

The less great news is that the brain MRI showed two new lesions, one in each hemisphere. It is also possible there is new growth in one or more of the old brain tumors. I've seen my new radiologist today (head of the department and a rockstar doc!) and we confirmed that we will be moving forward with Gamma Knife radiation to the new tumors. I don't have a date yet, but hopefully next week. I have to meet with a neurosurgeon first on Monday, as this procedure takes both radiology and neurosurgery working together. This procedure is a much more advanced, precise and effective one than the SRS (stereotatic) that I had a year and a half ago. One of the many advantages of my new health facility is that it is pretty top-of-the-line. As proven by my last round of brain radiation, there is hardly any downtime following. After just one day of rest I was back up, feeling perfectly normal, driving around and taking care of myself.

This does change my camping plans (Pennsic) for the next couple of weeks. Clearly first week is out for me. Nice thing is that I only paid for one week just in case something came up. If they can get me in for the procedure next week then I'm hoping to make it down to Pennsylvania for the majority of the second week.

This news has weighed me down a bit lately. I've been sitting with it, waiting for more news and a game plan before really talking about it openly. It's always easier for me to handle things when I have a direction and a plan. I can lean on the surety of that when I feel a little "off my feet." And, to be completely honest, brain tumors are the scariest for me. I'm fully confident in my doctors, in my care, in my partner, in my support network - I know this will be routine and effective. Still a little creepy. And the idea of my head being in a metal cage while they beam minute radiation waves in my brain is rather Clockwork Orange creepy. However... perhaps gamma radiation is what I need to kick off the superpowers waiting to be activated. Finally! I'll have the ability to reach the top shelf anything when I feel like She-Hulking up. A rather useful skill.

That's where we are. It is a "one foot in front of the other" time at this moment. I can still look around me and smile. Candlelight wavering under the soft breeze of the fan, incense drifting in the air, the shadow of my Paramour as he moves around in the kitchen behind me, a content cat sitting in window ledge, a bit of Dr. Strangelove on in the background, words flowing forth. Life has certainly been more difficult and less blissful in past times. I'm rather enamoured of Now. So I'm going to go sit in that Now space for a bit. Lovely evening to you all.

Friday, July 7, 2017

Summer sun something's begun

Hello, hello, hello! I return to the clear the cobwebs from around here fresh off an absolutely fantastic week at the Outer Banks beaches. I am still buzzing from the good times, slightly less sunburnt, a bit worn yet from sunrises and late, late nights, but settled back in fully unpacked and laundered. A most excellent kick off to summer festivities and fun.

Diving directly into the medical stuff... so those last appointments with my radiologists and pulmonology were more impactful than I expected. Talking to my radiologists about my new breathing difficulties, and the lacing of blood in my phlegm that morning, they immediately (almost in stereo unison) said "radiation pneumonitis." The symptoms started almost 4 weeks to the dot from my last radiation and were pretty clinically standard for this. Essentially it is inflammation of the lungs in reaction to said radiation. It's angry and swollen, but luckily there is a rather easy solution - the steroid prednisone. I am about halfway through the run now and have definitely seen improvement. So long as I don't overexert myself it is not really slowing me down that much. (Though, there is that whole "moonface" look that I just can't quite get used to.)

This treatment break has felt like the best vacation ever. There's still a doctors appointment somewhere most weeks (though I did have a 2+ week break!). But my body has rebounded in spades from the lack of poison in my life. So often while in treatment I was at the direction and mercy of my body. I might have plans or expectations for the day, and then my body would change the direction of the day or even just flat-out say "NO!" to everything. I've learned to be even more mutable than I was in the BC (before cancer) days, but I do still dislike having my options limited. There is also that whole control thing. It's awfully nice to be able to make decisions for myself versus having them forced upon me. It has been nine weeks since any type of treatment and, to be completely honest, there is some part of my mind that really hopes next week's newest scans show everything is all clear again. It will be two weeks from now before I get the results... yet my hope and optimism have somehow rebounded as well in these warm summer days. Could there possibly be some time with N.E.D. on my horizon? This thought has come to me. I am as scared of it as I am enticed.


It is funny how the mind works. As a casual dabbler and gourmand of psychology, I am always diving down the rabbit hole of trying to figure out how I got where I am in my head. When I have been in the middle of the cancer shite with treatments and all, my mind is always hoping for the best results at every scan: shrinkage and/or disappearance of tumors. When I was in N.E.D., clear and fancy-cancer-free, my mind was caught up in the fear and scanxiety of new tumors with every scan. I now find myself somewhere between those two spaces. I am not N.E.D. and I am also not in treatment. So my natural state of optimism has stepped in and has whispered this possibility to me. Bourne upon the soft wind of the bedroom fan in the wee hours of the morning.

I sit with this thought, with this possibility; also with the fear of this possibility being untrue.

And I am unsure where that puts me. At this moment it puts me at the brewery that is essentially just around the corner from my house. Using the dimmed light ambience of a local pub, the rise and fall of conversation and occasional bouts of laughter in the air, the occasional bursts of chatter with the waitstaff, and pauses for people-watching to calm me while I pretend that I have grand prescient thoughts to throw out to the universe.

I am in love with my life these days. And that makes me more desirous of a clean bill of health. It makes me even more aware of all the future events I have to look forward to. It makes me feel more alive than I have in years. What more could I desire than even More?