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Monday, September 4, 2017

All I need is the air that I breathe...

It has been quite a busy month. I successfully made it through two Gamma Knife brain radiation treatments, with the holes in my forehead to prove it. Those were some very long days. Arriving at 6 AM for check-in so I could be taken in to get the metal halo placed on my head for ultimate immobility. They then do a very precise MRI scan so they know exactly what they are looking to radiate. There's a long wait while the radiologists and neurosurgeon create their treatment plan. And then it is into the radiation room for as much time as it takes. They literally screw me onto the table, which was somewhat disturbing listening to the squeaking of the metal screws in the halo. And strangely surreal considering this is the most up-to-date treatment available and there is a doctor on each side of my head with a basic screwdriver re-adjusting between every radiation angle change.

It is weirdly quiet in the Gamma Knife room. And because I was locked into the machine for each angle change, the machines don't move like they have in all my other radiation treatments. There is nothing to make any noise. They did have a CD player and played me some rather relaxing and fine jazz and soul music. Luckily, the early mornings and light sleeps combined in such a way that I dozed off and on throughout each treatment. And the lack of a clock in the room kept me from watching the time tick past. I did my best to just be "along for the ride" and to be kind and thankful to all the considerate caregivers that I had throughout each day. (Speaking of caregivers... a public shout-out to my handsome Paramour for all his time and attention. He is there for every single appointment, every single worried night, every good day too. It is something amazing to be part of a true team.)

Some good news from the second radiation treatment - my radiologist said that the second MRI scan showed that the left side they treated first was looking exactly how they wanted. There will be a follow-up MRI in October to look at everything again. With all the tumors treated and my torso showing cancer-free, I am sort of, maybe, perhaps in a state of N.E.D. (no evidence of disease) again. Quick fist-bump to everyone for that tidbit.

As is often the case with long-term cancer, I am dealing with another related issue to all the treatments. The last lung tumor that we radiated earlier this summer, although dead, is continuing to be a major obstruction in the brachial airway on the left side. And since there is little or no oxygen getting to the upper part of my left lung, there is still the internal collapse (atelectasis) that is not getting the opportunity to heal. Taken together, my breathing capacity is rather diminished as of late. It has slowed my pace and my strength over the last several weeks. And especially started to become a problem about a week and a half ago when I started to taper down my steroid prescription again. That is twice now that a lower dose of the Prednisone has led to another possible problem. So we've bumped it back up to a moderate level again. Who knew, especially since I was so reticent to take it, that Prednisone would actually be a good friend to me.

Luckily since we don't have to deal with cancer right now, we can focus on my lung and try to come up with solutions for the breathing problem. We met with my pulmonologist last week and they sent me home with orders for oxygen. So now I have both at-home and on-the-go oxygen generators. It has made a huge difference and my body is super happy to have regular levels of oxygen in my system again. My heart rate has been high the last month because it's been working overtime to move oxygen through my body. These last few days it has moved back down into a lovely more normative range. I've been cooped up at home mostly lately because it is just too much work for my body to get out and about. The  oxygen has helped and we were able to get out of the house for a wonderful warm day at the Arts, Beats and Eats festival yesterday to see a couple of our favorite local bands. The portable tank may not be the sexiest fashion accessory I've worked with, but it didn't seem to stop me from feeling pretty fierce.

The next step is to meet with a thoracic surgeon later this week. We will most likely be talking about placing a stent in the left brachial airway to move the dead tumor out of the way so that I can get back to breathing more like a normal person. It is not a certainty, but both my oncologist and pulmonologist agree that it is likely the best choice. I am just excited about anything that widens the straw it feels like I am working to breathe out of these days. As my Paramour is fond of reminding me whenever I get frustrated with my slow pace and lessened abilities, breathing is one of the core necessities for living. And we're working to get that fixed. For now, that's all the medical news that is fit to print.

Outside of the multiplicity of medical appointments these days, we've been catching up on a lot of Netflix and I've been trying to catch up on a long-standing lack of sleep. Doesn't make for the most exciting of times but I'm staying busy in my own way. The company here at home is stellar. Though on workdays I sometimes find myself with too much space to think. I continue to work on being gentle with myself, both physically and mentally. Though I won't say that it is always easy. It is very easy to feel lazy when what I am truly doing is giving my body the time and space it needs. It is a different world than the go-go-go/do all the things mode that I am more accustomed to. But I am learning to just breathe in the spaces between.

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