One Foot Off The Ledge

I still want to do something a bit lighter after some rather heavy emotional weeks, but after my last posting on my reaction to the bronchoscopy, I felt I the need to close that loop. I don’t think I’ve ever had such a strong involuntary emotional response to anything in my life so many times, especially in such short order.

I've found leukemia to be nothing short of an emotional roller coaster. One day, I’m hurling in one of those little green tubs for all to hear and then something magical happens and it feels like I’m sailing along, whooping it up with my hands above my head, bravado showing for all to see as we all go down the next hill on track. I still have my not-so-great-feeling-really tired days, but thankfully, the really nasty stuff is behind me.

I’m in an outpatient status, but I’m spending the better part of my day at the hospital being infused with an electrolytic cocktail of potassium, calcium, phosphorus, and magnesium each morning before my anti-viral Foscarnet. I get this drug instead of Gancyclovir which I had been able to get infused in the hotel because after prolonged use, it took my blood chemistry down. The Foscarnet is manufactured in England and imported here. Afterward I get another bag of saline to protect my kidneys, so I have an IV pole for a dancing partner for about 5 ½ hours a day. So, if everything moves along, I can get back on the road to the hotel around 1:30 or 2:00. It makes for long days...and this assumes I don't get other things like platelets, other blood products, or another infusion that my morning tests said I needed.

I'm being prepped for the procedure. The camera is about the width of a pencil and the images are projected on these screens. Of course, I don't remember a thing, but I'm sure it was captivating.  Mr. DeMille, this is NOT what I meant about a close-up!

As a side-note, I can't wait for my hair to grow back. You could use the reflection on my head as a mirror!







I'm sucking down some Lidocaine to numb my lungs in this pic. I had tried to be the funny guy and play with the nebulizer like a flute, but my photographer missed his Kodak Moment®.

It’s a routine, but there are no breaks and I still have the mother of all pill boxes and my med-induced high blood sugar I need to monitor. It’s not enough to simply say that I have to take a certain medication three times a day because there are interactions that prevent something quite that simple. so I may have to offset one pill by an hour or two or with/without a meal. It gets complicated. Blood sugar is treated like a type I diabetes with insulin and I have two different types I have to work with based on the time of day and the particular sugar level.  Everything is closely regulated by the MTU pharmacy. Maintaining proper blood chemistry truly is a 24/7 proposition right now. It’s tiring, often wearisome, but it’s life right now.

But I still don’t have to sleep in the hospital…and that’s a good thing.

 

Now, I did say I don't sleep at the hospital, BUT I guess this would be the exception.

Prednisone is one of the many medications I take. It’s a corticosteroid and also acts an immunosuppressant. I take these in rather high doses being a transplant patient. The big thing it does is ward off Graft Versus Host Disease (GVHD). I used to be at more than double the dose I am now, but in order for me to escape the Puget Sound VA Health Care System’s gravitational beam and return to my home in Utah, I have to be off of these bad boys. So, the next step in this Rube Goldberg contraption is to further taper off the steroids and to do that we have to make sure my lungs are able to handle the reduction in the dosage (GVHD will often attack the lungs, hence the reason for pulmonologists involved and the need for the bronchoscopy). You can see the delicate balancing act on which all this hinges, now, right? Putting it all together took some time for me, too.

That said, having four white-coated pulmonologists tell me on Thursday they wanted to do a bronchoscopy on Friday, for whatever reason, was not a welcome proposition. Just the word made me shake involuntarily because no matter what mental machinations I tried to invoke, all I could see in my mind’s eye was the day I was whisked away to the MICU after a room full of doctors and nurses put an oxygen mask over my face, pumped the thing that looked like a toilet float to make me breathe and sedated me. I awoke in a strange place with a machine breathing for me and every time I needed to cough, I felt like I was drowning. The bronchoscopy they did en route to the MICU had involved a drug that paralyzed me so I could hear and feel everything but do nothing. All I can tell you it was the most terrifying thing I have ever experienced and nothing any of these well-meaning doctors could say could lessen that memory. I was officially freaking out despite their assurances that this would only take an hour, that no paralytic drugs would be involved, that I would remember nothing, and that it was really no big deal.

I went home after my routine IVs were over on Thursday, only to be greeted by a phone call to confirm scheduling of the bronchoscopy for 1:00 p.m. Friday, November 1. I told them I would haunt their dreams forever if it wasn’t exactly the way they told me…after all, it was Halloween. Again, I was assured six ways to Sunday that this would be quick, painless, and over in less than an hour and I would *not* be getting any kind of paralytic drug. Nothing per oral after midnight except my meds as directed by my outpatient team. Adding insult to injury, yes, I was really hungry!

I slept most of the morning in the outpatient recliner while getting my daily IVs – partly out of emotional escape, partly because of my inability to sleep through the night anymore. Once it was my turn to see the doctors for routine rounds, they asked me how I was doing and the irony was just like the previous day, I had a lot of energy. Physically, I was doing well…emotionally, I was a wreck and I broke down shaking and unable to hold it together. Thankfully, they all knew what I’d been through and the medical team really holds us as a big family and truly are rather tender with us – especially the nurses of course.  The attending physician, Dr. Wu, is awesome anyway.  He’s the one of the three attendings that seems to actually give straight answers instead of hedging around. Since it was the first day of the month, the new fellow was part of rounds.  She was pretty responsive for not knowing me or my history, but pledged to make sure she would make this a non-event.  They gave me some Ativan about 30 minutes ahead of my shin-dig, which officially put me under the influence of a debilitating drug and I was now no longer qualified to drive my IV pole to the pulmonary suite, which is about 100’ from the MTU where we were. I got wheeled over like a proper cancer sicko.

The attending physician from the ICU came in the room with the doctor that was going to do the procedure and I told him I had one word for him:  “E-I-E-I-O”.  He laughed and said, “You really were awake for the last procedure. I admitted that I had a little help on the clue to “Old McDonald.”  He told me that if I could remember the song they sang during my procedure, he’d give me a $100 bill (and he showed me the Benjamin to prove it). I didn’t remember that part of it, but I was very much awake and paralyzed and told him so.  He was shocked to know that and was profusely apologetic along with the other pulmonary people who were involved.  He again assured me this would be less than an hour and there were absolutely no paralytic drugs involved.  So, for the next 15 minutes, the technicians and nurses gave me different kinds of drugs to numb up my lungs, throat, and vocal cords so I wouldn’t feel anything, letting me know what they were doing every step of the way. I can’t say that I knew when I succumbed to the anesthesia. I just know I woke up and they said I did fine. 

Suffice it to say, without the emergent situation and 20 some-odd white-coated individuals in the room, the level of trauma was nonexistent. The technicians were very calm the whole way through…and since I was already doped up, that didn’t hurt either.  The end of this is that I should find out if it’s some sort of pneumonia, infection, or something else probably on Wednesday. All of the possibilities end in the same:  if it’s anything, it will be treated with some sort of oral antibiotic.

In any event, the bottom line is I’m OK and not quite as traumatized as before…although I gotta tell ya I’ve not quite had that kind of emotional response in anything, ever. I’m not over the whole thing yet because it’s still linked to those two very bad trips to the MICU, but if I have to have another bronchoscopy and they take me through it like this past one, I’ll be OK with a little nurse’s helper ahead of time!

It all feels very arbitrary some days and very logical others. What I do know is that I know my strength is returning incrementally and I’m able to sleep a bit more rather than in fits and starts. I have some days where I feel really great and I still have my days where I’m just exhausted and I understand that’s just something I’m going to have to live with over time and learn to listen to my body to prevent going backward.

Moving onward and upward…be well, stay strong, and much love to you all.

Music today from Rob Thomas – “Little Wonders”

 

Let it go, let it roll right off your shoulder
Don’t you know the hardest part is over?
Let it in, let your clarity define you
In the end we will only just remember how it feels

Our lives are made in these small hours
These little wonders, these twists and turns of fate
Time falls away but these small hours
These small hours still remain

Let it slide, let your troubles fall behind you
Let it shine until you feel it all around you
And I don't mind if its me you need to turn to
Well get by, its the heart that really matters in the end

Our lives are made in these small hours
These little wonders, these twists and turns of fate
Time falls away but these small hours
These small hours still remain

All of my regret will wash away somehow
But I cannot forget the way I feel right now
In these small hours
These little wonders, these twists and turns of fate
Yeah, these twists and turns of fate!

Time falls away, yeah but these small hours
And these small hours still remain, yeah
Ooh they still remain
These little wonders, oh these twists and turns of fate

Time falls away but these small hours
These little wonders still remain

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

Wake Me Up

As a navy pilot, we used a term that distilled down from some prescient life-saving factoids: situational awareness. It came from the aircrew collectively knowing what was going on. For example, if the pilot at the controls was moving off course, one of the other aircrew could simply say something like, “I hold you 15 degrees right of course. Without getting into great detail, the pilot had either had the option to explain the deviation or to relinquish the controls. It’s not a matter of skill, just safety. With the exception of the mission commander, rank has all but gone away in the cockpit so every air crewman’s responsibility is to look out for the safety of the aircraft, each other, and the passengers. It absolutely remains the goal. It always must be. One is never too junior to preserve his or her own hide after all!

There are the times though when you find yourself wildly out of control and the staff of aircrew are utterly foreign to you. Thankfully, those occasions have been rare. Unfortunately this week, I had one of those very frightening experiences. I wasn’t at the controls, merely a passenger, figuratively speaking.

My leukemia numbers had been steadily rising, propelling me toward qualifying for outpatient status from what the medical staff had been saying, and that is a good thing, of course, so who was I to question?!  But…then we do have to factor in contingencies…but unless you are the type who is more perhaps guided by fear and what might happen, who does that kind of thing and, more to the point, who can predict an emergency? The best we can do is be moderately prepared. Suffice it to say, when an emergency does happen, it has that unwitting result of hijacking one’s situational awareness, and sometimes of one's consciousness. In this case, I didn’t see it as an emergency at the time, but from what I was told after I awoke, it was indeed a life-threatening condition I had just survived.

Isn’t that special?

So special that since I had asked for one of those lovely pharmacological substances that tend to bring on a touch of amnesia, I don’t know if I got a near-death experiences or not. I don’t think my heart stopped, so there may be that part of the near-death game that I did not qualify. I just know I apparently stopped breathing. My own “code blue” and I missed it all! That’s probably a good thing, though. An alveolar hemorrhage and a blood cancer don’t seem to have much in common, do they, but they conspired to take me down. Regardless, complications and side effects will happen despite our best plans and intentions. Since breathing is rather critical is perhaps the reason I’ve “enjoyed” my own personal MICU room-with-a-view instead of the Marrow Transplant Unit like all other good girls and boys with leukemia. OK, chalk-off one more experience I thought I’d never have. I think it’s safe to say that waking up in an ICU is not on everyone’s bucket list!

I gotta tell ya, when I came to, I honestly thought I had just happened to have clicked a selection for a video game. It was seriously that surreal. I didn’t remember giving the consent for a bronchoscopy, I don’t remember getting anesthetized, and I certainly don’t remember the panic and fear that took me on down. After having morphine-induced hallucinations of Russian mafia zookeepers, it’s not much of a stretch to find yourself restrained, unaware of where you are, how you got there, and why you can’t talk. Much to my chagrin, the nurse who attended me as I awoke had a name similar to Ishmael. I had been trying to drill-in to my budding collegiate son the first three words of the classic, Moby Dick (“Call Me Ishmael”), so this was cruel irony on a level I couldn’t even laugh at it.

Once I got to communicating with really awful sign language and rockin’ really old school clipboard, I figured out I had not, in fact, clicked the correct icon to wake up, but that I was intubated and in the MICU of the hospital, just down the hall from the Marrow Transplant Unit from where I had started this rather scary adventure just hours before.

A pic from the MICU at the Seattle VA Hospital. This is not my close-up, Mr. DeMille! It's proof that this otherwise genteel kinda guy does have a scrappy side and survived a wrestling match with death. It's a bout I don't ever, ever want to fight again. My oldest son, Austin, to the right, has been tremendously helpful. I couldn't have survived without him. Notice, also, the incredibly hi-tech communication device at my left hand (no mouse required!)

I got to repeat this less-than-fun adventure just a few days later, but I think now that I’m back at the MTU, we’ve figured out the cause and not too terribly unlike my first hitch in the hospital some months ago, I have doctors amazed how quickly my body has responded. I’m just happy to be around and not pushing up daisies.

It’s easy to simply say that it wasn’t supposed to happen this way, and there’s always more to any situation, of course, but who thinks, “My number is up today! It has been a great ride.”? I have been quick to say that I’ve enjoyed a great life, so I’m not clinging to every little bit of life out there. On the other hand, I have an awful lot left to live for. Children, grandchildren, niece, and nephew accomplishments, relationships yet to foster and cultivate, professional achievements, people to help, and so on all await us all. So, we can dork around on-line or make things happen – truth be told, a little of both.

I’ve been extremely tired, I’ve watched my weight yo-yo from my intake weight of 190 up to nearly 237 (if the bed scale is to be believed) and now back down today at 201…and continuing downward. I’ve learned more about medical arts than I care to, realized in-spades how much this battle is for others as much as it is for me, and been re-infused with a sense of gratitude that pushes past anything I hadn’t been able to comprehend to this point. And yet this grand adventure is still in progress. That said, the next milepost is in sight and I’m eager to push past it. If all continues to run well, I’ll be going back to outpatient status and recovering away from this big white building of IV alarms, stiff medical protocols, and sterility. After that, we look forward to returning to Utah to let my hair grow back and navigate the new normal…a Christmas gift I don’t think I could hope to exceed. My own nightmare before Christmas is coming to a close and something much more colorful and happy is about to begin.

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

Today’s music is, appropriately enough, Breathe from Michelle Branch

 

I've been driving for an hour
Just talking to the rain
You say I've been driving you crazy
And its keeping you away

So just give me one good reason
Tell me why I should stay
'Cause I don’t wanna waste another moment
In saying things we never meant to say

And I take it just a little bit
I, hold my breath and count to ten
I, I've been waiting for a chance to let you in

If I just breathe
Let it fill the space between
I'll know everything is alright
Breathe
Every little piece of me
You'll see
Everything is alright
If I just breathe

Well it's all so overrated
In not saying how you feel
So you end up watching chances fade
And wondering what's real
And I give you just a little time
I, Wonder if you realize
I've been waiting ‘til I see it in your eyes

If I just breathe
Let it fill the space between
I'll know everything is alright
Breathe,
Every little piece of me
You'll see
Everything is alright
If I just breathe
Breathe

So I whisper in the dark,
Hoping you hear me
Do you hear me?
If I just breathe
Let it fill the space between
I'll know everything is alright
Breathe,
Every little piece of me
You'll see
Everything is alright
Everything is alright if I just breathe... breathe

I've been driving for an hour
Just talking to the rain