Epilogue

At the end of the book, the epilogue neatly ties all the loose ends together. Boy gets girl, the bad guy gets his overdue comeuppance, and justice is meted out to bring a satisfying end. If the story is good and the author skilled, there’s a bit of a chuckle in there as well and everyone lives happily ever after.

This story was supposed to continue. Of all things to have happen, this wasn’t supposed to be the arc in my plot. In fact, I actually beat leukemia. I did not, however foresee an issue with my lungs of all things. No one did. My rapid decline went from bad to worse yesterday and I was admitted back to the VA Hospital in Seattle and I am now in a holding  pattern of sorts while family fly in from the four corners of our very large country. My time is at hand.

It’s a pretty tough pill to swallow to have a doctor tell you that you have “months.” You wrap your head around the reality over time, but I didn’t even have a week. That doesn’t really give me any time at all to do anything that would settle final affairs. No, this epilogue is hardly an elegant one.

Here’s how it was supposed to play out:

The doctors knew I didn’t want to pass from this side of the veil to the next in a hospital, so plans were in the works for me to fly back to Salt Lake City on Wednesday. I would continue the same exact treatment that I was receiving here in Seattle and we would plan out end-of-life care to be around loved ones at home when the time came. We were also looking to cross off one final bucket list entry by going to Hawaii. My SkyMiles account was ripe for the pickings and I had loads of Marriott points as well. The amount of time seemed conducive to get my affairs in order as well and my son graciously offered to, well, insisted staying on as my caregiver.

But yesterday, that all changed and now we are staving off the inevitable while my family wings its way toward me.

So, what does one think about as death approaches? Well, I’m a bit disappointed sure; there’s a little trepidation about what’s on the other side; and let’s face it, the actual process of dying isn’t a walk in the park. I really don’t like the progressive weakness. We’ll be looking at palliative measures here in the next few hours, so my epilogue here really isn’t much of a hero-rides-off-into-the-sunset page turner, but who knows? Maybe you’ll see it that way!

Most authors also include an Acknowledgement Page for everyone who helped in the writing of the book. Since this is a lifetime, I can’t do that here for obvious reasons. I do want to simply say that it has been one helluva ride and I’m grateful for a life that has been so rich and full of adventure. For whatever parts you have played it, thank you.

I spoke with a dear friend today who asked me to elicit a promise. I’d say to that person and to you all the same words of Zach Sobiek: “Don’t wait to find out you’re dying to start living.” You can honor my memory that way.

No music selection today. Pick the tune that just makes you happiest and enjoy.

With all  my love and respect

Todd Park -December 15, 2013

No Easy Way to Say This

As a young junior naval officer, I had someone who was a mentor of sorts.  Bob Owendoff was one of my professors my senior year at the Naval Academy, a devout man of principle and heart. I wrote about him on my other blog here. He gave me a book that had a simple goal-setting exercise that has stood me well in parsing out the important from the urgent. In Alan Lakein’s book, How to Get Control of Your Time and Your Life, the question is posed, If you knew you would be struck dead by lightning in six months, how would you spend those six months? Assuming all final arrangements had been taken care of, what would you do?

Asking a question like that forces your hand to see the things that are really, really important, doesn’t it? Precious few of us know when our number comes up. If we’re lucky, we live to a ripe old age and when it’s our time, we pass away peacefully in our sleep, leaving behind a wonderful legacy of memories and people who honor it. When that question becomes a pronouncement, things are a bit different, but they don’t have to be.

I’ve taken solace in a young man named Zach Sobiech who fought a brave battle with his own bone cancer who made a point of saying that you don’t have to be dying to start living. I’ve been buoyed by a single image of people holding the hand of Jen Merendino who, on her death bed, was able to look back and say, “I loved it all.”

I found Angelo Merendino's images of his wife evocative and powerful.  I bought a variation of the photo above because what I needed the most was the human touch of caring hands. I still do.  You can see the full gallery of images and support Angelo at this web site

In my case, I’ve done my level best to stay optimistic and positive in the midst of some pretty rough stuff. Leukemia, for me, has been an exercise of academics because it has all been on paper. Lab reports, x-rays, MRIs, CT scans, nuclear bone scans, vascular and echo ultrasounds, blood sugar pricks, and so on. Yeah, the hurling into those cute little green tubs was real enough along with the extensive bruising on my stomach and arms, the cramps, the chronic fatigue, the aches, the pains, the prodding, and everything else?  Pretty real…nothing academic about any of that.

I don’t have a remarkable story like Zach’s and I don’t have a chronicle that so eloquently and beautifully details the life and untimely death of Jen Merendino, but I have my own experience that continues to unfold.

Today, the latest wrinkle in that very complicated piece of origami was that my lungs continue to deteriorate. After my latest pulmonary function test, another CT scan, and an x-ray, I had the ultimate sobering conversation with my oncologist and a pulmonary doctor. While we will continue to treat the ailments in the lungs, unless they respond somehow to the existing medications, things will continue to decline over time. How much time? No one can be certain, but “months” was the answer I got when I pressed.

So, I have this lovely little oxygen cannula and now have my very own high-tech wheel chair just like my double amputee friend and fellow vet, Isaac.

I gotta tell ya, this is not how I envisioned today turning out.

So, that goal-setting exercise about six months just got very real. Sure, there’s a possibility that my body responds and I recover. Anything’s possible, but it looks like the bucket list needs to be prioritized and I need to do the proverbial ‘getting my affairs in order.’

 

What do you say to that? I just got the talk.

What goes through your mind when it just ground to an abrupt halt? The averted glances, the sympathetic looks on the faces, the sorrowful pats on the back, the apologies for…what? Doing your job?

At this point in time, I’m pretty numb. Suffice it to say, I’ve shed a few tears today and am still due my requisite meltdowns. I don’t know what I need or want for that matter. I have made my wishes pretty clear to my medical team and that if it’s medically impossible to move forward, I want to return to Salt Lake City and perhaps even take my dream trip to Hawaii before all is said and done. I have over 100,000 Sky Miles that need to be used, to be sure and while I won’t be competing in the Ironman while there, one last walk on a warm, sandy beach just feels like the right thing to do. No one wants to breathe their last in the sterility of a hospital room if there’s a choice, right?

I had been spending a lot of time daydreaming about that Craftsman-era home with the wraparound porch sporting a couple of Adirondack chairs, white picket fence and the impossibly lush Kentucky bluegrass and a modest flower and maybe even a vegetable garden…in the perfect up-and-coming gentrified neighborhood, of course! I envisioned designing and building out my workspace where I’d craft articles, word-smythe (that's my trademark!) the book I said I would all my life, and hand-made calligraphic renderings. There was the proverbial man-cave with the big screen TV and surround sound of course, but mostly it was being surrounded by the people who have made life worth living, sharing raucous memories around the table – great wine and cheese with family and friends!

But you know what? At the end of the day, it’s a life well-lived. A life with no regrets (or few anyway). My body may be failing, but my spirit will not, cannot. It seems to me that if anything this time of year, we hear of these epic stories of the spirit enduring where circumstances would make success impossible. Rather than feel sorry or pity, you can honor me by overcoming your own expectations for yourself and soaring above circumstance, by smiling in the face of whatever adversity you’re working through, and laughing a lot.

I can’t say what would honestly be most helpful from people right now. Suffice it to say, I’m still mentally processing this news; and like I say, things could change on a dime. It wouldn’t be the first time it happened. So, what I can say is this: keep praying if you’re so inclined. Don’t be offended or put off if I don’t respond to Facebook chat, emails, text messages, or phone calls right away. This is obviously an emotionally charged time. I’ve also got a lot of practical things I need to square away.  Finally, and perhaps it goes without saying, please avoid sympathy. I’m still alive.

Here’s a little information that may help and prevent awkward situations (if not with me, others):

While there’s time, let’s do a whole lotta laughing together, shall we? While there’s time, let’s share the best of memories and meals! While there’s time, let’s just be together and hold hands cherishing the warmth of human companionship and love! While there’s time, let’s focus on living.

Stay strong, be well, and much love to you all.

Today’s music is from Lady Gaga – The Edge of Glory

 

There ain't no reason you and me should be alone
Tonight, yeah baby
Tonight, yeah baby
I got a reason that you're who should take me home tonight

I need a man that thinks it's right when it's so wrong
Tonight, yeah baby
Tonight, yeah baby
Right on the limits where we know we both belong tonight

It's hard to feel the rush
To push the dangerous
I'm gonna run right to, to the edge with you
Where we can both fall over in love

I'm on the edge of glory
And I'm hanging on a moment of truth
Out on the edge of glory
And I'm hanging on a moment with you
I'm on the edge
The edge
The edge
The edge
The edge
The edge
The edge
I'm on the edge of glory
And I'm hanging on a moment with you
I'm on the edge with you

Another shot before we kiss the other side
Tonight, yeah baby
Tonight, yeah baby
I'm on the edge of something final we call life tonight
Alright, alright

Put on your shades 'cause I'll be dancing in the flames
Tonight, yeah baby
Tonight, yeah baby
It isn't hell if everybody knows my name tonight
Alright, alright

It's hard to feel the rush
To push the dangerous
I'm gonna run right to, to the edge with you
Where we can both fall over in love

I'm on the edge of glory
And I'm hanging on a moment of truth
Out on the edge of glory
And I'm hanging on a moment with you
I'm on the edge
The edge
The edge
The edge
The edge
The edge
The edge
I'm on the edge of glory
And I'm hanging on a moment with you
I'm on the edge with you

I'm on the edge with you

I'm on the edge with you

I'm on the edge of glory
And I'm hanging on a moment of truth
Out on the edge of glory
And I'm hanging on a moment with you
I'm on the edge
The edge
The edge
The edge
The edge
The edge
The edge
I'm on the edge of glory
And I'm hanging on a moment with you
I'm on the edge with you

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

Outa Control

I’m no control freak, but like most people, I do like to be able to take care of myself. It’s part of that being an adult thing. The day you’re diagnosed with a debilitating, life-threatening illness, control is kinda thrown out the window.  If the pronouncement, “You have acute myeloid leukemia” isn’t bad enough, the treatment will take you down a few more notches to the point of indignities galore. Then there’s the recovery phase where I am. Even though there is an overall game plan to beating this monster, it feels so out of control some days that you just want to put your hands over your ears, fold up into a fetal position and scream for it to just stop.

Cue the silence.

When I came to Seattle, that plan consisted of baseline testing to ensure I was still in remission and a viable candidate bone marrow transplant; chemotherapy to essentially decimate my immune system to receive the donor stem cells; and a 100-day post-transplant regimen to keep GVHD (graft-versus-host disease) in check while the new cells engraft. Ideally, on “Day 100,” we’re looking at getting discharged, fists pumping all-round, and heading home to the ‘new normal.’

Today is that very “Day 100” from my transplant date, however it’s going to have to pass as a milestone for me because in my case, it’s now about my lungs – specifically my right lung – one of those unforeseen and nearly lethal side effects of the treatment. That doesn’t mean there isn’t improvement because there actually is. It just takes time and you guessed it, it involves things that are out of my control.

Side effects being what they are, you can’t push this kind of thing. The body will respond when  it responds how  it responds if  it responds at all. Having spoken with fellow transplant patients, some of them are on their second and third transplants because their first and second grafts didn’t take.  Mine obviously (and thankfully) did. (Thank you, Hans*, my mystery donor!) Again, though, it’s totally out of our control. We watch our lab numbers and hope that they’re going in the right direction; we wait for our bodies to respond appropriately to the meds and our shiny new stem cells; and we hope for the doctors to give us the thumbs-up to go to our homes instead of back to the hotel for another night of captivating TV entertainment and away from where we’d rather be.

I’m honestly not a very good complainer or kvetcher (if that’s a word!), but after all these months, there are days where the 24/7 medication management becomes wearisome, the fatigue from said medications, the endless hospital visits, and so on just become overwhelming. I concede it’s OK to have a bad day here and there, but I’m generally a positive upbeat kinda guy and this has depleted my emotional reserves and I’m feeling it a bit more acutely these days. As much as I’ve tried to put my best face forward and keep smiling, my past few postings have bordered on rants, I’ll admit. What can I say? I’ve been through a lot and am pretty tired of it. Who wouldn’t be?  I’m not alone in those feelings, I’m sure and I’m certainly not the first to have discovered that cancer sucks. But I’m being real - it’s raw, it’s honest.

I obviously have a lot of time to think when I’m flat on my back or in a chair getting an IV med, so my warped and hopelessly trivial mind goes to the opening scenes from the TV series Kung Fu where the master says, “When you snatch the pebble out of my hand, it will be time for you to leave.”

Although one of my attending physicians is an awesome Asian guy, he has no such litmus test for me, no martial arts training on my schedule, and he’s more adept with modern Western medical technique than ancient herbal remedies…and the ‘it will be time for you to leave’ is pretty open-ended. It’s out of my control. And his as well, really.

So…when can I leave?

I certainly don’t want to be discharged too early to find out I need to get back to Seattle for more medical fun-ness, so I’m not pushing anyone for hard and fast dates or even decisions, but it’s always good to get a big picture idea of where I fit. I get signals here and there and I’m reasonably sure there is light at the end of this tunnel that isn’t the freight train coming back at me at the end of the month. Suffice it to say, Sandy Claws is going to have to make sure he got the temporary address forwarding memo from the post office, but not too much longer than that. I hope. So, my Christmas playlist will not include I’ll Be Home For Christmas this year, but I will have visitors from home which will make my season brighter by far.

That could all change of course, so I’m not making plans…after all, it’s all out of my control.

I still look for and find the bright spots in this journey called cancer. They’re out there and I have to seize them to keep sane and looking forward. Choosing to see the positive, to be positive in the midst of a rather negative situation is something for which I do have control.

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

* - I’ve nicknamed my donor Hans because the only thing I know is that I’ve been told he’s male and circumstances lead me to believe he is from Germany based on donor anonymity regulations. Well, I know he has O+ blood because that’s now my blood type instead of AB+. I guess I’ll find out about any allergies and other neato stuff like that as time goes on.

Today's music is from Michael Bolton - Go The Distance

I have often dreamed of a far off place,
Where a hero’s welcome would be waiting for me.
Where the crowds would cheer, when they see my face,
And a voice keeps saying this is where I'm meant to be

I'll be there someday, I can go the distance.
I will find my way if I can be strong.
I know every mile would be worth my while,
When I go the distance, I'll be right where I belong.

Down an unknown road to embrace my fate,
Though that road may wander, it will lead me to you.
And a thousand years would be worth the wait.
It might take a lifetime but somehow I'll see it through

And I won't look back, I can go the distance,
And I'll stay on track, no I won't accept defeat,
It's an uphill slope,
But I won't lose hope, 'til I go the distance
And my journey is complete, oh yeah.

But to look beyond the glory is the hardest part,
For a hero’s strength is measured by his heart, oh...

Like a shooting star, I will go the distance,
I will search the world, I will face it's harms,
I don't care how far, I can go the distance,
'Til I find my hero’s welcome waiting in your arms.

I will search the world, I will face its harms
'Til I find my hero’s welcome waiting in your arms