Liar, Liar. Ned's on Fire.

So that week just sunk into oblivion.

I talked a lot about breathing in my last post. It was on my mind because it was becoming harder every day. The home oxygen was a great booster, but we had to keep upping the liter output to keep up with my worsening condition. Called both my oncologist and pulmonologist on Wednesday to let them know it was getting worse, not better or even staying the same. Late in the afternoon I got a call back from the pulmonologist telling me to pack and bag and head to the ER to be admitted for the evening. *Sigh*

I had an appointment with a cardio-thoracic surgeon on Thursday to do a surgical consult about the stent placement. One of his team came to talk to us Thursday afternoon and got all my signatures so they could schedule it for the next day, Friday. One of the convenient things about being in the hospital is that everything gets expedited. No more waiting for slots - they just jam you in somewhere and get shit done ASAP. You are in STAT status and it can be kind of nice. I don't know how the week and weekend would have gone if I was just home on oxygen waiting until early this coming week for the procedure. I would have been in very poor shape by now.

Instead, I have a happy stent in my lower left airway that is allowing me to use the full capacity of my lower left lobe. Still no use in the upper half, but it is way more than I've been using for about two months. I can ambulate about without losing all my breath and take a shower without needing a sit-down break afterward. My vitals the last two days have been in healthy normal mode and I've been needing less and less oxygen again. Four nights/days in the hospital and they sent me home this afternoon. So nice to be home on my own couch in my pjs

Like us, you might be wondering why my condition was worsening when that tumor was necrotic and we were all thinking I might be in a state of N.E.D. Well, 3 CT scans in the last month show that stubborn tumor in my left brachial airway was growing and cutting off more and more of the airway. Harumph! Stupid, shitty tumor has been named Medusa ('cause she's apparently a bitch to kill) and I meet with my oncologist on Wednesday to talk about how we are now going to deal with her again.

I expect a new spate of appointments with the radiologist and pulmonologist again to talk about all the options. I expect (hope) that my case will be taken to the Karmanos tumor board soon as well. Time to get back on the cancer horse and see where it takes me.

For the moment, I am feeling peppier and have better breath and energy than I have in a couple of months. Although you're not allowed much solid sleep in the hospital with all the poking and prodding every couple/few hours, I did sleep better last night than I have in a week. That's the plan for most of the next two days actually. Catching up on sleep and proper rest and recuperation in my own space. Plus way better food.

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.