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