Friday, November 1, 2013

Brick to the Back of the Head


I had planned on today (Thursday, October 31) being a rather light writing day after having had a couple of rather heavy emotional weeks. And it seemed the stars were aligning for that to happen. I had spent Wednesday night just listening to the music I had selected for over the time I've been writing this blog and the Universe dealt me a really nice hand in the morning. It started out as a really great day. I slept better than I usually do, I awoke with a lot of energy and had a good breakfast before heading off to the hospital with my son. That proverbial spring was in my step! Even the nurses commented that I looked good. To top it off, since today wasn’t one of my regular clinic days, my time at the VA was spent getting the usual IVs, but again because it was a good day, one of the IVs has been replaced by an oral medication, so I actually had one less IV. Bonus!
Good days start with good beginnings!

And then…it all came crashing in.

Indeed!
I have been getting weekly PFTs (Pulmonary Fitness Tests) which gage how quickly and how deeply I can breathe. We do these for a couple of reasons. The first is to compare them against my intake tests and we're also doing them to taper off the high dose of steroids I'm taking. These tests take all of five minutes and I’m done.  The technician who conducts these tests told me that my tests have been virtually identical, but if you look really closely, the doctor pointed out that my results have been about 1% less by the week. That doesn’t sound like a lot and it really isn’t, but over time, yeah, it’s not a good thing, so the thing that got me shaking was when a group of white-coated pulmonologists marched into the outpatient room and pronounced that they wanted to do a bronchoscopy (pictures will be forthcoming if I can coerce someone or at least guilt someone as long as no faces are in the pictures...except maybe my bloated one).
Let's hope my lungs look a lot like this tomorrow!

Let’s move back in time just over a month ago and that same pronouncement seemed innocuous enough, except that I had two of them, one of which I had stopped breathing prior to it and both ended up having me intubated with a ventilator doing my breathing for me in the MICU. Also, one of them had me literally paralyzed. I don’t think I’ve been so terrified in my life. Seriously.

The panel of white coats that visited me today assured me up and down that this wouldn’t be the case and I’d be out of there in about an hour just like Lenscrafters and they wouldn’t use the paralytic drug. Besides, I told them that since it was Halloween, I’d haunt their dreams forever if anything bad happened!

Academically, I can understand this is not a big deal

...and in fact my buddy from Salt Lake who was here last week had one of these things while he was here

...and I understand it’s totally routine

...and I understand from my nurse that it’s OK to be a bit unnerved or scared by it

...BUT I have to say the only thing that comes to my mind is the trauma from the last two where I awoke in a strange place and being told later it was nothing short of a miracle that I survived. 

THAT has been going through my mind all day long, followed by shaking and tears.  Is that what PTSD is? If it is, I have a new respect for my fellow vets who have traumatized and suffer from it. Yet one more bit of alphabet soup I’m getting first-hand experience with. Lovely, huh?

So, this afternoon (Friday, November 1) at 1:00 pm PST, I get to find out if there is something called aspergillosis, a kind of pneumonia, or infection or nothing. Now, all of these are somewhat common in immunosuppressant people like me who are on the post-side of a bone marrow transplant and they all can be treated by antibiotics and I’m not feeling sick, short of breath or displaying any other symptom. So, bottom line, it’s not serious (at this point), but rather for me, it’s simply the procedure itself. So at the end of the day, it’s getting through having this camera pushed down into my lungs to take a look-see at the fun that awaits it.

For some people, this really isn’t a big deal and as I’ve written in the past, my tolerance for discomfort and my threshold of pain has really ratcheted up, but because of the trauma associated with this one, I’ve struggled…a lot. Add to it, the sheer length of time I’ve been dealing with the leukemia, I’m getting tired of it. I really need a break from the 24/7 nature of this thing where I can take a day off, enjoy something that perhaps I used to take for granted, do something that doesn’t make me feel like I want to just keel over from exhaustion, not feel limited because going up a flight of stairs is so damned hard. Think about that the next time you simply go up a short flight of stairs, get out of a car, look at your head of hair in the mirror or something else that is just...normal. Yeah, yeah, I know, this, too, shall pass and I know it will. It's just really, really  wearisome after all these months.

I don’t really like complaining. It’s not my style, but it’s reality and I know that the road ahead is still got a lot of miles on it and I don’t have much of a choice but to walk it gladly, willingly, and eagerly, knowing that while I’m on it, I get to live and that's a good thing, isn't it Martha Stewart?!

At least my day started out with great joy and energy. My intent today was to share some playlists of music that had carried me along when I just needed a little extra something or even cry with a bit of joy because music has been a big help during these struggles.  We’ll get there.  In the meantime, I push through my own struggles and thank you for hanging with me…and if you haven’t figured it out, I really need you right about now.

OK, this is a short one today and I’m NPO (nothing per oral) after midnight so someone can push their toy down my throat. Damn, I'm hungry! *sigh*

Be well, stay strong, and much love to you all.

Music for today is from Evanescance “Bring Me To Life” … yeah, my mood is a bit out there today.
How can you see into my eyes like open doors?
Leading you down into my core where I've become so numb
Without a soul, my spirit sleeping somewhere cold
Until you find it there and lead it back home


Wake me up (Wake me up inside
I can't wake up (Wake me up inside)
Save me (Call my name and save me from the dark)
Wake me up (Bid my blood to run)
I can't wake up (Before I come undone)
Save me (Save me from the nothing I've become)

Now that I know what I'm without
You can't just leave me
Breathe into me and make me real
Bring me to life
Wake me up (Wake me up inside)
I can't wake up