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clinic days, my time at the VA was spent getting the usual IVs, but again because it was a good day, one of the IVs has been replaced by an oral medication, so I actually had one less IV.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

Heroic

Being a frequent flier of the Veterans’ Hospital, I have come across a great many men who have been to the edge of hell and back. Some bear scars on the outside, but just as many still nurse wounds inflicted on the inside. Some things just can’t be unseen, some things just can’t be undone, and some experiences just too unimaginably traumatic to be dulled by the passing years. Ball caps, decorated with bright embroidery cover the receding hairlines of gray and shade the eyes that once saw the unthinkable. Makes me wonder if Danté was a vet!

The eyes I’m seeing more frequently are getting brighter and the hair is far from gray, but the wounds are just as traumatic. One such young wounded veteran and I became friends after crossing paths at the hospital a number of times and sharing a lot of time together connected to our respective dancing partners – that would be our own IV poles—at the ‘other’ club med. When he told me the story of how he lost his legs in Iraq, the only thing that came to my mind was that I had met “the real deal,” replete with medals and a story of saved lives under fire. Yet in talking with him, he refuses to be labeled a hero. His attitude is simply that he couldn’t live with himself had he not done what he was trained to do. He harbors no bitter feelings and doesn’t feel like the world somehow owes him.

My friend, Isaac. He has a fancier IV pole that I do, but trust me, I'm not at all jealous!  He's getting a cocktail of all kinds of things post-surgery.  I'm getting another dose of toxic chemical goodness (aka chemo). He and his very beautiful wife are keeping me company. His scar looks amazingly like the Continental Divide. Yeah, aside from war stories, that's what we share -- we compare scars! He wins that one...I have no fancy scars to show off except that my arms make me look like a drug addict and my one time PICC line sites. Move on, nothing to see here, folks!  

My look of incredulity wasn’t the first he has dealt with. People see him in his wheel chair or on his prostheses and want to connect with a bona fide hero, but he’s not interested in being the center of that kind of attention. It struck me that he just wants what I want: to be treated as normal and enjoy the same life as everyone else and while we can’t get away from that thing that brought us together in the hospital, neither do we want to be owned or defined by it. I think the best way to put it is that there’s simply a profound sense of patriotism that frowns on the bumper stickers, but sticks to what’s genuine.

I don’t mean to paint the kind of picture where there’s some sort of “Aw, shucks, ma’am. I was just doin’ muh job” kind of exchange, but in a real sense, it’s just what we do and who we are. Professions where those routinely putting their lives on the line like police officers and firefighters are very much the same. They accomplish the heroic on a daily basis, they incur the same kinds of external and internal traumatic injuries, and they most certainly deserve the same respect as our returning armed forces veterans.

Translation:  Courage isn't falling, but getting up each time you fall. 
I put up the French version since it's Bastille Day

But there are other kinds of heroic acts where any one of us ordinary people rise to the occasion and do something that impacts or saves someone else’s life. We read about these people in the paper or on our social media outlet of choice that restore our faith in humanity - that our world isn’t full of inept or downright corrupt politicians, selfish and willfully ignorant followers of demagogues, or powerful people who wield their influence only to increase their wealth. What those heroic acts consist of are pretty subjective of course, but for the person who is on the receiving end, it means everything and sometimes it means a saved life.

It’s that kind of heroism that is quite literally saving my own life.  Earlier this week, I received a call from the Veterans’ Administration Health Care System in Seattle. The nurse on the other end of the line informed me that a bone marrow donor had been identified and that I would begin the next phase of treatment for my leukemia on July 25. The waiting is over…for now. The first two weeks will be for evaluation. At the end of these two weeks, I’ll find out what kind of transplant I’ll be undergoing as that hasn’t been decided yet. That much, at least, is news to me. At that point, the really ugly preparation begins and my immune-reboot process begins in earnest. It’s an exciting prospect of course, but it also rendered me officially freaked out. Things have become very real in short order.

Regardless of the machinations going on inside my own brain, some young man who will be unknown to me for at least a year, has done one of these heroic deeds. His decision to donate his stem cells will give me a second life. That sounds so very simple and perhaps a touch hyperbolic; and while it’s difficult for me to think about it in those terms, it’s unquestionably true.

I think the really difficult part for me to wrap my head around is that I’ve never had any outward symptoms to where I could point my finger.  All the things the hem/onc doctors asked me about were never part of my experience.  I felt like a million bucks one day and was quite literally on my way to the gym – bag packed – and the next thing I knew I was being poked, prodded, and tested ad nauseam in a hospital bed. After months of lab tests which, to me, are nothing more than numbers on a page, I’m going to be taken to the brink of death and an anonymous hero is swooping in at the last possible minute and giving me an infusion of his blood and I will rise from the (near) dead and be restored.  Comic book aficionados or people with a spiritual background probably see a number of parallels there and to be sure, they’re not lost on me. The whole process is nothing short of a pharmacological miracle, really!

So, to my unnamed donor (as of today anyway), my deepest and most sincere thanks for you doing something heroic, even though you may not see it as such.  May you receive in return, many times over, the good will and kindness you have extended to me…and may you never know the need of a stem cell infusion in your own life. And of course, may that life be long, fruitful, and filled with much joy.

To the rest of my support network – both near and far – thank you for hanging with me for what has been a rather long trip.  We have another four months or so to go, some of which may get pretty rough. I’ll need you more than ever during that time. Stay tuned…and of course, you all need to be well and stay strong where I may have some challenges there and know that you are loved very much!

Today’s music: Hero by Chad Kroeger featuring Josey Scott

I am so high, I can hear heaven
I am so high, I can hear heaven
Oh, but heaven, no heaven don't hear me

And they say that a hero can save us
I'm not gonna stand here and wait
And I'll hold on to the wings of the eagles
Watch as we all fly away

Someone told me that love would all save us
But how can that be? Look what love gave us
A world full of killing and blood spilling
That world never came

And they say that a hero can save us
I'm not gonna stand here and wait
And I'll hold on to the wings of the eagles
Watch as we all fly away, oh

Now that the world isn't ending, it's love that I'm sending to you
It isn't the love of a hero and that's why I fear it won't do

And they say that a hero can save us
I'm not gonna stand here and wait
I'll hold on to the wings of the eagles
Watch as we all fly away
And they're watching us, they're watching us
As we all fly away
And they're watching us, they're watching us
As we all fly away
And they're watching us, they're watching us
As we all fly away, whoa