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

Part of the Plan

There are two ladies who handle appointments at the Marrow Transplant Unit (MTU). They are amazingly efficient at directing traffic, they are calm under pressure, and they even remember my preferred name instead of simply referring to me as Mr. Park.  I watch the two of them and am amazed at their perpetual smiles and how efficiently they keep things moving. Considering the sensitivity of the work on the ward and that there are double the people (patients and caregivers) who are constantly coming and going, it’s actually rather noisy and even confusing, but these two ladies are cool customers!

After I left the hospital Friday afternoon, I got a call from one of these ladies. She told me that on Monday morning, I would be meeting with the doctors to determine my course of treatment – the next part of the plan. I was left with the impression based on the transplant date that I wouldn’t likely be seeing them until some time around the 12^th even though they would be probably meeting on Wednesday to discuss my case. My gut feeling from what I’ve been hearing is that I’ll be undergoing a standard myeloablative transplant rather than the “mini” (non-myeloablative). Because of my good physical condition and age, I’ve been told I can tolerate the rigors of this procedure. If this happens, I’ll be admitted on August 14 and begin a course of busulfin and cytoxan, two very powerful chemicals to decimate my immune system so that the transplanted stem cells will engraft when infused a week later.  There are apparently fewer complications for this procedure than the mini and it will put me on the road to recovery and subsequently home sooner, provided that everything works out well. The other plus – and it’s a big plus in my mind – is that I would not be undergoing total body irradiation. Like I posted yesterday, there are plusses and minuses to both procedures and the big minus to the standard transplant is that it will make me a whole lot sicker than the mini and I’ll be inpatient for about 3-4 weeks.

I met with the transplant coordinator on Friday as well and she advised me that my correspondence with my donor wouldn’t be possible for two years. There are some very strict privacy regulations with respect to donor privacy and my correspondence has to be very generic and can’t even include anything that would indicate the country in which I am living! That leaves things pretty broad, reminding me of the kind of letter a third grader writes to the fireman who visits the class for a super show-and-tell. While I understand confidentiality, HIPAA, and privacy, I have a profound sense of gratitude that generic greetings cannot possibly convey. I’m inclined to believe my donor came from out of the country as the waiting period is two years instead of one, the usual period for domestic donations. When the prospect of a transplant became a necessity back at the beginning of this odyssey, there was some discussion about Germany having a very robust bone marrow donor program. At the time, I joked about coming through the process with a German accent à la Hans and Franz from Saturday Night Live. All I do know as a matter of fact at this point is that my donor is male.  Even though I am genuinely grateful, I tend toward the irreverent (yes, it’s true) and I am inclined to believe my donor is foreign, so I am referring to my donor as Hans from this point forward. He has to have a name after all and I obviously have Northern European genetics. I do hope that I get to meet him face-to-face at some point. I’d very much like to extend my gratitude to him in person. Perhaps by zen, I’ll be talkin vis a German accent and very muscular – ve vant to pump you up!

Hans and Franz from SNL ... pumping me up with stem cells! 

One part of the plan at a time.

In the meantime, I’ve continued to terrorize Seattle as a tourist. The people I’ve met have been wonderful, all great ambassadors of the city. On the road, I’m less inclined to speak in glowing terms and that extends to the parking lot. So, today, instead of playing the alphabet game as I did during the last road trip I took with my sons, my ‘game’ was to spot the most egregious parking job. We came across three pretty good examples in short order. Being a tourist has been both bad and good.  Suffice it to say, anything to move me closer toward returning to life as I knew it, or at least as close to it as I can get, is movement forward. On the other hand, I’m facing some unpleasantness over the next few months, some of which will make me feel pretty durned sick. My sleep schedule will return to the erratic inpatient routine and I’ll get intimate with white-coated folks who are interested in how regular I am. This time, my middle-of-the-night conversations inside my head about mortality will have more gravitas, even though I have no intention of going down that path.

And yet…

There is much to be grateful for and much to look forward to and much to live for, even if it looks different than I had thought it would. It’s all part of the plan

Today’s music from Dan Fogelberg, appropriately enough, Part of the Plan

I have these moments
All steady and strong
I'm feeling so holy and humble

The next thing I know
I'm all worried and weak
And I feel myself
Starting to crumble

The meanings get lost
And the teachings get tossed
And you don't know what
You're gonna do next

You wait for the sun
But it never quite comes
Some kind of message
Comes through to you
Some kind of message
Comes through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

I had a woman
Who gave me her soul
But I wasn't ready to take it
Her heart was so fragile
And heavy to hold
And I was afraid
I might break it

Your conscience awakes
And you see your mistakes
And you wish someone
Would buy your confessions

The days miss their mark
And the night gets so dark
And some kind of message
Comes through to you
Some kind of message
Shoots through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

There is no Eden
Or heavenly gates
That you're gonna
Make it to one day

But all of the answers
You seek can be found
In the dreams that
You dream on the way