Not Just A Little Sobering

After being in treatment for acute leukemia since February, I’ve come to realize that there is no real routine to speak of, especially since arriving in at the Puget Sound Veterans’ Health Care System. I can arrive on time at 8:00 a.m., get my blood drawn with all my compadrés, get my IVs running, and get my golden ticket to head back to the hotel only to see the MTU’s number in my caller ID. It could be as innocuous as letting me know about an appointment, changing my dosage on a medication, or having me come back in for something unforeseen. Any way you look at it, I’m on a short leash and it’s just part of the big picture of treatment. Some days a pain, some days a reassurance, but always something of which I have to be conscious…and there really are no days off, even if I don’t have an appointment at the big white building on Beacon Hill.

Med management is, as I’ve said before, an hour-to-hour undertaking and I’m my own best advocate when it comes to my healing. It means being brutally honest in how I’m feeling at the risk of sounding like a hypochondriac and asking a lot of questions.

This week has been a tough one with respect to the details as well as the big picture, but it started with what might otherwise be seen as routine. Because of my lungs, my attending physician has asked that I come in every day rather than Monday, Wednesdays, and Fridays (which, incidentally was reinstated as of this morning…see? Everything is always in a state of flux!). Outpatient rounds typically devolve into a quick social call where the entourage of medical folks ask how I’m doing, exchange a few details about the lab results from my blood draw with each other, perhaps adjust medication a bit, and move on to the next patient. It’s pleasant enough and they take all of five minutes, maybe ten if Austin or I have questions we’d like to discuss.

Wednesday was really…really different.

It was a conversation that hit me out of the blue about a topic I’d certainly mulled over in my mind, but that I was having said conversation with my attending physician, the head of the Bone Marrow Transplant Unit, took it out of the realm of academic and into the real.

Without preamble, he pointed out that my pulmonary function test from that morning didn’t show any improvement over the previous week, something I already knew. Where he went with that was not just a little sobering. He pointed out that with any intubation, the likelihood of being extubated successfully becomes smaller. He didn’t want to even offer up any statistics in that my survival from the previous two intubations was seen as pretty remarkable. In fact, he suggested that if I were required to go back on a ventilator, the possibility of me regaining consciousness would be unlikely.

This is me in the MICU on a ventilator for the second time. The machine is breathing for me and it was actually a terrifying experience for me in that any time I had to cough, a pulmonary technician had to "help" me and it felt like I was drowning. To communicate, I had an old school clipboard. I'm trying to be a bit funny to make the best of a very bad situation. I was in this contraption, catheterized, being fed intravenously, and really unable to do much of anything for almost a week. Yeah, it sucked, but it kept me alive.
 

How’s that for a conversation opener?

Who, in their right mind, would submit to that? I, already had two awful, PTSD-inducing experiences on the ventilator and to hear that submitting to a third time would most certainly end my life was a bit much. Now, bear in mind, that I’ve already come to terms that my time could come and in reality, I’ve lived a great, fulfilling life, but I’m not ready to cash in the chips yet! I’ve got too much yet to do and too many life experiences yet to live, so this is not something I want to hear. Who would? But I’m still in treatment and there are “TRM – Treatment Related Mortality” statistics for a reason.  People really do die because the treatment is rough, let me assure you, but I will survive, I will survi-i-ive (sing it with me!)

One of the entourage was the staff psychologist and we talked about this death thing in real terms. No, I’m not dying and yes, we’re all still fighting this lung crap with a vengeance. No one is giving up. I will say that I refuse to die in a hospital if at all possible and as much as I find my adopted home town of Seattle endearing and welcoming, my home is the cradle of the Wasatch Front in Salt Lake City and I’ve made arrangements with the University of Utah for the disposition of my remains to be used in training our next cadre of medical professionals as well as donating my organs. It just seems like the responsible thing to me.

I don’t need to tell you that the whole ordeal was a really tough one. I was a bit out of it for the rest of the day. I needed to decompress, but how? I shed a tear or twelve, talked it out with family both email and on the phone and had a barrage of questions for the doctor the next day.

I am pleased to say that the doctor clarified a few things. First, it was a conversation that should have happened after the first intubation, but just never did; Second it was a possibility, not a likelihood; and finally, he apologized for springing it on me the way he did.  Afterward, I felt like he was really trying to work with me rather than back me into some corner. I explained my position and we moved back to the pleasantries that we were used to. Bottom line: game on with the lungs. I can do this and we’re all on the same page once again.

So, we’re back to perpetual med dose changes, being inconvenienced by a short electronic leash, and the sound of IV pumps swishing away and making harsh electronic noises – all things that indicate the war on steroid-induced myopathy, lung malfunction, and leukemia continues in earnest. As tiring as that has become over that past several months, I again say, “Game on!

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

Today’s music is from Dan Fogelberg – Phoenix

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

Found deep water
Before I'd even learned to swim
Found deep water
Before I'd even learned to swim
Never thought I'd
See the sun again

Once I was a
Once I was a man alone
Once I was a
Once I was a man alone
Now I've found a
Heart to call my home

Like a phoenix
I have risen from the flames
Like a phoenix
I have risen from the flames
No more living
Someone else's dreams

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

You almost had me, old lady
You almost tied me down good
You played the lady in waiting
And I waited as long as I could

Too long the songs have been silent
Too long the strings have been still
I never knew what you wanted
And I guess that I never will

Like a phoenix
I have risen from the flames
Like a phoenix
I have risen from the flames
No more living
Someone else's dreams

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

Yeah, yeah, yeah
Yeah, yeah

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