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

Hi-Res Reflections

 

There are days when I look in the mirror and wonder who that guy is staring back. Between the rockin' insta-hair loss, puffy face thanks to the high-dose of steroids I’ve been prescribed, and the atlas of purple splotches on my stomach from injections, it’s like the person in the mirror is more of what an older, beat-up relative might look like. Nope, it really is me and yeah, I look like hell. No getting around it. But it’s not just the mirror that advertises my bruised frailty of course. I’m working through recovery from a procedure that has mortality statistics and has weakened me pretty substantially.

Adding insult to injury, last week, we pulled up to the unloading zone at the hospital. For me, getting up out of the car isn’t just the quick two-step it used to be, especially as it uses the same muscles as going up stairs. Now, once I’m out of the car, I walk just fine, but deep knee bends and getting up without a little extra bracing aren’t in the cards right now. It takes both hands and I physically move my legs over to the right as I get out of the passenger side of the car.  A much older gentleman watched me do this as he came up from behind the car pushing his walker and said, “Ah, stop acting like an old man.” Why, thank you sir, I’ll take that under advisement. Atrophy’s a bitch!

I’ve been doing my best to do exactly as the doctors have been telling me with respect to physical activity, especially as I’m now in the stage of treatment where we’re monitoring my blood levels very carefully and adjusting medications accordingly. The doctors have told me that the steroids will monkey with my emotions and the best thing I can do is stay physically active, so I have been walking as much as I can. The large city block surrounding the extended stay hotel is about 1.3 miles and I try to get around once before heading off to the hospital to get it out of the way and of course since it’s before the sun comes up, I can avoid any issues with exposure to UV rays. It also gives me a chance to clear my head of the cobwebs that find their way in there. Exercise has always been a good thing for me and even these little morning constitutionals do this here body good.

Being able to do this before heading out requires some planning the night before, but it seems like my best laid plans still aren’t enough. The one-stop antibiotic that we had been administering via IV a couple of times a day at the hotel has a side effect of pushing all of the other blood chemistry down and at some point, we have to change to a different antibiotic cocktail. Talking to my attending physician today, he told me that this isn’t an unusual thing and that I had a longer run than most people get. The one I’m on now requires a hydration regimen before and after, effectively quadrupling the time it takes and it’s not something they’ll give us for the hotel, so if I don’t get a seat in the outpatient treatment room, it means we’ll be at the hospital until about 5:30 instead of the usual 1:30. Still, as long as I’m not sleeping at the hospital, it’s a bonus, even if I’m there every day instead of the Monday-Wednesday-Friday schedule. The medical treatment has been a full-time job regardless.

Rather than drone on about electrolytes and the details of medical fun 101, I want to close out today in honoring the memory of a comrade whom I met at the Salt Lake City VA during my initial stay there.  The social worker had arranged for me to talk with two people who had been through the transplant process so I’d have a good idea what I was in for, long-term. It turns out that one of them is actually here with me in Seattle this week for some follow-up work.  Dennis has been cancer free for a number of years.  We had a fun dinner last night at a local Irish pub and as usual, his humor has been something that kept me smiling. His t-shirts are far better than mine, too! So, between the two of us, we keep the nurses happy too. I found out through Dennis that the other gentleman, a sober-minded Air Force vet named Theron Willardsen, was not so fortunate and as it turns out, passed away just a few days from his battle with ALL after I last chatted him up at the Salt Lake City VA. I remember being happy to see him and asked how he'd been.  His response was one that challenged my best people skills.  The last thing he told me was, “In about 40 minutes, I’ll be able to tell you whether I need to get my affairs in order or I’m fine.” I missed circling back with him as I was getting ready to leave town to head up to Seattle for my own transplant. A few days later, I was on my way northward for a shot at new life and Theron’s own life came to a rapid close.

If nothing else, it drove the point home that our mutual foe doesn’t mess around and that this battle is not something we can take for granted, ever. I can poke it in the eye, I can dance around its name if I want, but cancer is not something we can be glib about. It’s going to bring out the best and worst in a person. It disfigures, it maims, and yes, it kills. And as much as I don’t like it, I have to be prepared for the worst both in hearing it from others and in myself. I’ve had to listen to others tell me that they may not make it and I can’t tell you how tough that is. The silver lining in this is that now, after nearly dying myself twice in the space of a week, my very presence in front of these people offers hope that there may indeed be a prayer for the dying.

 

As for me, it’s a responsibility of sorts to, in the words of Shakespeare, “to thine own self be true.” It’s also important to be candid to my fellow cancer survivors. I can’t offer false hope, but neither can I not be who I am. I’m naturally a glass-half-full kinda guy, but even if the glass isn’t half full, there’s always something in the glass and that’s what I have to work with. On the converse, I’m really grateful that others have been entirely up front with me about what to expect, from doctors to acquaintances. Optimism and encouragement? Absolutely! However, the last thing any of us still fighting the good fight against cancer need is bravado and sugar-coated platitudes.
 

It took me a while to really wrap my head around the words my first hematologist told me that leukemia would kill me within 90 days if I did nothing. I’d never faced my mortality in real terms even though my chosen career choice quite literally put my life on the line both in training and on the battlefront. I just never thought in those terms. We may not have been at war, but the places I served didn’t care about that – they were. Having stared death down with a glass far than half full, the guy staring back in the mirror is getting mighty real. He still cracks a lot of jokes, sometimes just to keep sane, but more out of the point that life is meant to be lived with great gusto and with laughter…and yes be authentically to be upheld of the scrutiny of high resolution.

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

Music for the day from Justin Timberlake - Mirrors

Aren't you something to admire,
'cause your shine is something like a mirror

And I can't help but notice, you reflect in this heart of mine
If you ever feel alone and the glare makes me hard to find
Just know that I'm always parallel on the other side
'Cause with your hand in my hand and a pocket full of soul
I can tell you there's no place we couldn't go
Just put your hand on the glass, I'm here trying to pull you through
You just gotta be strong

'Cause I don't wanna lose you now

I'm looking right at the other half of me
The vacancy that sat in my heart
Is a space that now you hold
Show me how to fight for now
And I'll tell you, baby, it was easy
Coming back here to you once I figured it out
You were right here all along

It's like you're my mirror
My mirror staring back at me
I couldn't get any bigger
With anyone else beside of me
And now it's clear as this promise
That we're making two reflections into one
'Cause it's like you're my mirror
My mirror staring back at me, staring back at me

Aren't you something, an original,

'Cause it doesn't seem merely assembled

And I can't help but stare 'cause I see truth somewhere in your eyes
Ooh I can't ever change without you, you reflect me, I love that about you
And if I could, I would look at us all the time
'Cause with your hand in my hand and a pocket full of soul
I can tell you there's no place we couldn't go
Just put your hand on the glass, I'm here trying to pull you through
You just gotta be strong

'Cause I don't wanna lose you now
I'm looking right at the other half of me
The vacancy that sat in my heart
Is a space that now you hold
Show me how to fight for now
And I'll tell you, baby, it was easy
Coming back here to you once I figured it out
You were right here all along
It's like you're my mirror
My mirror staring back at me
I couldn't get any bigger
With anyone else beside of me
And now it's clear as this promise
That we're making two reflections into one
'Cause it's like you're my mirror

My mirror staring back at me, staring back at me

Yesterday is history
Tomorrow's a mystery
I can see you looking back at me
Keep your eyes on me
Baby, keep your eyes on me
 
'Cause I don't wanna lose you now
I'm looking right at the other half of me
The vacancy that sat in my heart
Is a space that now you hold
Show me how to fight for now (show me baby)
And I'll tell you, baby, it was easy
Coming back here to you once I figured it out
You were right here all along
It's like you're my mirror
My mirror staring back at me
I couldn't get any bigger
With anyone else beside of me
And now it's clear as this promise
That we're making two reflections into one
'Cause it's like you're my mirror

My mirror staring back at me, staring back at me

You are you are the love of my life (x10)

Now you're the inspiration for this precious song

And I just wanna see your face light up since you put me on
So now I say goodbye to the old me, it's already gone
And I can't wait wait wait wait wait to get you home

Just to let you know, you are

You are you are the love of my life (x8)
Girl you're my reflection, all I see is you
My reflection, in everything I do
You're my reflection and all I see is you
My reflection, in everything I do
You are you are the love of my life

It’ll Kill Ya

One of the many things that I’ve experienced thanks to my stint in the hospital during this year is a major disruption to what was a solid sleep schedule. Shoot, within a few minutes after pulling the covers up, I was out like a log and woke up a few minutes before my alarm would ever make a peep. It was a beautiful thing. With all the pharmacopeia swimming in my blood now, it’s anyone’s guess when and if I’m going to sleep, so I’ve spent a lot of time staring at the ceiling, reading, dorking around on Facebook, and just plain ruminating in the wee hours of the morning.

Suffice it to say, when you’ve been diagnosed with a fatal illness, your thoughts tend to wander off into territory that was otherwise uncharted before and considered the purview of people like clergy and philosophers. Well, just like foxhole conversions, these kinds of situations turn everyone into metaphysical novitiates of sorts. We all have opinions and I’m no different. It’s just that my opinions were now flavored by real possibility instead of just conjecture and casual conversation or actual study.

I really didn’t even want to go down this street.  I mean, who wants to talk about death seriously? There are a lot of people who talk about death and dying for a lot of different reasons. You obviously have the funeral and end-of-life industry folk who make their living off of this transition and then there are the people who actually are serious in their metaphysical and spiritual in their discussions, and then the people who talk about it as some sort of intellectual topic or ideal. Me? I dunno. I’ve not come to any real conclusion except that I’m at peace with the whole thing. It’s not like I’m ready to go as I’ve written before, but in a sense, I’m OK with it in that I’m not afraid. There is no fear because I was so close to it and didn’t realize it. Maybe there’s the ‘ignorance is bliss’ element to it. I will say up front, the process kind of unnerves me still. I’m really over the pain and discomfort thing as you might imagine.

It’s funny, in a sense, that as we age, there seems to be barely any cognizance of even the concept of death. We’re immortal as youths! Nothing can touch us. The rise of so-called extreme sports is more technological than anything else, but that attitude has been around forever. It’s exhilarating, it’s awesome, it’s amazing…and it challenges death in the face. The degree of difficulty, the bungee jumping, the Red Bull jump from the edge of space and so on thrill us and we see death pushed farther away from us.

And then we get older.

Our hair lines recede, the six-pack ab is relegated to our younger brothers, and the guy we see in the mirror looks more like our dad than ourselves. And…then there are the softball games, nights out steamin’ with the boys, and other things we used to do without thinking that now take a while longer to catch up. That bungee jump is looking more like a mid-life challenge to overcome the mini-van than adrenaline rush now.

You know the drill. We all have our list of things. The real irony for me is that over the past few years, my endurance has shot through the ceiling. I’ve participated in some very long bicycle rides for charity that I don’t think I would have been able to complete as a younger man. And it was at my apex of participating that I was faced with my own mortality: you, son, have acute myeloid leukemia.  You have 90 days to live unless we treat this aggressively.  Yeah, that’ll kill ya.

It wasn’t the short thing I had for cigarettes as an 18 year-old.

It wasn’t the hazardous career I had as a navy pilot.

It wasn’t the high-stress job I had on the road with less-than-optimum nutrition.

It wasn’t the possibility of getting taken out while cycling by some distracted teenager texting on her new iPhone.

It was a totally-out-of-the-blue diagnosis unrelated to anything I could have imagined – leukemia.

So, it’s back to laying in a motorized hospital bed thinking. There are a lot of complications in treating this rather nasty cancer I’ve got. It’s not like I have a tumor that you can feel and that causes pain, but it’s in my blood and is every bit as insidious as a physical tumor – perhaps more so. The chemicals do their job and then there are the side effects to these chemicals that make me feel oh-so-lovely, so I get more chemicals to offset them. I have the mother of all pillboxes to manage them plus a written grid/guide to keep them all well-organized and on-schedule. And I now get to give myself subcutaneous injections to keep my blood sugar leveled out (another side effect) each night. So, between the massive weight gain/loss and the injections, I will be extra sensitive to women who suffer PMS and diabetics…but whether it’s this cancer or either of these conditions would make me want to die outright.

You know, there are just too many things the media would try to scare you about. But life is too good, and at the sound of being cliché, too precious to ignore or to pass of as for granted, regardless of one’s age. As we age, even though it may seem so, life isn’t ethical, it just is. I’m 50 years old and while I’m more at peace with my own mortality, it’s no less a precious thing to me than when I was in my 20s.

A lot of what I find myself writing has to do with different perspectives on similar elements. I come again to mortality not because I’m morbid or that I even face it in a real way, but rather find myself full of gratitude for the little things and hope that you don’t have to go through what I have in order to come to some of the things I’ve seen and felt. I won’t suggest being a hedonist, but rather making the most of what you have. Live your life without regret, without fear, without ulterior motive. You just don’t know what might happen tomorrow. After all…it’ll kill ya.

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

Music for today from Phil Collins – True Colors

You with the sad eyes
Don't be discouraged
Oh, I realize
It's hard to take courage

In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
True colors
Are beautiful like a rainbow

Show me a smile then
Don't be unhappy
Can't remember when
I last saw you laughing

If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
Your true colors
Are beautiful like a rainbow

Can't remember when I last saw you laughing

If this world makes you crazy
You've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
True colors
True colors are shining through

I see your true colors
And that's why I love you

So don't be afraid to let them show
Your true colors
True colors
Are beautiful like a rainbow

Every Day is a Bonus

I’ve met a lot of people with cancer since my own induction into the NIHF (Nasty Illness Hall of Fame).  It’s like suddenly noticing that everyone is driving the same model of car you just bought. Sometimes you spot other survivors because of the awesome hairdo (i.e. lack thereof) or the PICC / port. Sometimes there’s just that vibe and you find yourself striking up a conversation with a perfect stranger as if they’re old friends. Those conversations aren’t at all uncommon and typically the people leave you feeling buoyed and encouraged from their positive outlook. After all, we’re all survivors and it takes a certain je ne sais quoi to keep breathing when the chemicals may be messing with your lungs.
 

 

Sometimes that positive attitude isn’t enough and the cancer takes a few fellow soldiers out. I’ve met two such people who were processing the news that their bodies weren’t responding to treatment any longer and I was on the other side of a curtain when a social worker was discussing palliative care options with someone who had just received that news. Just like the cancer diagnosis itself, just hearing the news of someone else’s impending demise stops you in your tracks.  It’s not so much a ‘there but for the grace of God go I’ sort of thing as much as it is reality when you’re battling cancer at all.  I don’t feel sick, but I know if I do nothing, I’ll be having that same conversation with someone with a practiced sad but efficient countenance. My doctor said as much on Monday. It’s powerfully sobering…and just like a good alcohol buzz, coffee doesn’t make this go away either, but it is, to be sure, the ultimate buzz kill!

I started writing this blog for two main reasons. Naturally, it’s a way of ‘controlling the message’ and letting everyone know what’s going on with a rather long-term, complicated condition I’m working through. The details are many and easily misinterpreted, so I try to use this forum to keep everyone who cares in the loop at the same time instead of saying the same thing over and again. That really gets emotionally taxing. But really, I write for me. Writing has always been a catharsis, a way of expressing how I feel and as a way of preserving some modicum of sanity in a situation where I feel like I’m held hostage to a situation that I did nothing to bring on and can do nothing to ameliorate. Admittedly, in the process of putting information out there, I tend to be a bit self-deprecating and flippant, but underneath it all, I can be one scared puppy on occasion.

Now, I wouldn’t try to start reading between the lines and wondering if I’m OK because that just opens up a new can of worms and if you’ve ever played with worms, you know how messy that can get! So, let me spare you the psychoanalysis and just come out and say that I’m OK. I will also say that while I accepted academically, a long time ago that I have cancer and am going to fight this son-of-a-bitch until one of us is the decisive victor, I struggle with the reality of it all. I have to trust a panel of test results that unequivocally, pathologically, and painfully say that I have acute myeloid leukemia even though I really have had no symptoms to speak of. Yet the facts point to a certain, untimely demise had I continued to live as if nothing were wrong. Hey, denial will only get you so far. Damn! So, I try to face it head on…but how do you process something you couldn’t see, feel, taste, hear, or smell? Highly experienced doctors and nurses all told me that the amount of blast cells in my marrow should have debilitated me, yet I was leading a very full life: working a job I really like, skiing black diamond slopes and hitting the gym every night. It didn’t make sense. And while I still can’t reconcile it at all, I’m not letting the lack of tangible evidence dictate my course. After all, my attending physician told me that my latest marrow biopsy was clear of cancer, but had something in it that indicated that left untreated, the leukemia would return and it would possibly be unresponsive to additional rounds of chemo.

The transplant is something I need in order to survive.

It’s easy to be a bit glib about being a survivor when there isn’t any discomfort, when there isn’t a tumor to be surgically excised or radiated, but it doesn’t change one iota the fact that without definitive, aggressive treatment, survival becomes increasingly unlikely. During the wee hours of the night, during my early hours in the morning before I’m around anyone, during the time I’m exercising, and during my conversations with other patients in the ward, I find myself pondering my mortality and profoundly grateful for each additional day. As my grandpa used to say, “Each day is a bonus.” He obviously said that as a way of recognizing his own morality and that his life was coming to a close. From everything I’ve been told and from everyone I’ve spoken with, it’s rather unlikely that my time is drawing nigh, as it were, but I still find myself with that same attitude: whether I have a few months or a few decades remaining in my life, every day is a bonus.

 

I don’t know when it was over the course of the past six months since my diagnosis that I found some peace with my mortality, with the possibility that I might not survive, but I did. There’s no fear or regret, but certainly a desire for more time to make a difference somewhere, somehow, in the lives of someone else perhaps – lots of someone elses. I’m sure that’s why I enjoy the charity bicycle ride events so much. But if, on the outside chance, that’s doesn’t happen, I’ll know I lived a wonderful and rich life. I’ve realized my childhood dream of being a pilot, I saw my children come into their own adulthood, and I knew what it was to “love and be loved in return.” I could list off a number of accomplishments, places I’ve seen, fun and off-the-wall things I got to do, but in the end, what matters most is the relationships I’ve had over the course of my life. Some of them, I got right and others were, shall we say, teachable moments, for this incorrigible big kid.

And maybe it’s now that I face death that I can say with some degree of certainty that I can live even more fully, both in the moment and out a few years. I’ll still look forward to learning from my mistakes, but the fact that I’m making them will reinforce that I’m alive and moving forward. No, I’m far from ready to be tossing in the towel, but I do want to make good on a vow I made to myself when I walked through my last big crisis. As I tried to reinvent myself, I came to the unavoidable conclusion that the woulda coulda shoulda game gets me nowhere but an invitation to other people’s pity parties and I tell you, I’m not going nor am I hosting one for myself. I vowed that I would live my life without regrets, that I would tell those I loved how I felt about them and that I would be happy in spite of my circumstances. I think I’ve done pretty well with that resolution and it has stood me well. That is, by the way, one of the reasons I end my blog posts the way I do. Regardless of how long I live, I want the last words you hear from me to be those of well wishes and kindness.

I don’t need to tell you that this story isn’t over. I have learned a lot of painful life lessons even in the past five months and those lessons will be refined a bit more over the immediate future as I walk through the proverbial valley of the shadow of death. I’ll get to see some pain and suffering, some tears, and some days that will just plain suck just because, but there are things left for me to do. I don’t have the faintest idea what they are, but I know I’m going to be busy for years to come.

I hope you’ll continue to stay alongside me for the ride. It’s going to be exciting, a little awkward and hard to watch at times, but exciting nonetheless. So be well, stay strong for me, and know that there is much love sent your way…every day.

Today's music comes from the opening of the movie Moulin Rouge, a variation of Nat King Cole's Nature Boy because "...the greatest thing you'll ever learn is to love and be loved in return."

There was a boy
A very strange, enchanted boy
They say he wandered very far, very far
Over land and sea

A little shy
And sad of eye
But very wise
Was he

And then one day
The magic day he passed my way
And while we spoke of many things
Fools and kings
This he said to me

"The greatest thing
You'll ever learn
Is just to love
And be loved
In return."

Detours

Thanks to the phenomenon that is ‘chemo brain,’ I have resorted to sticky notes.  I have them all over my desk – my next grocery list, things I need around the house, and a list of topics on which I want to write, among others.  I use the lined sticky notes because my handwriting gets worse in proportion to my blood chemistry.  How many of you can say that? Then again, how many of you keep such close track of the little numbers? When I get one of those ‘eureka’ moments, I write down the gist of my idea and repost the sticky on the hutch next to my computer monitor. I actually have five topics, which is unusual. I’ve typically been staring at the ceiling at 3:00 am or watching the wall late at night hoping that inspiration will jump out of the paint and seduce me like some ethereal muse. Suffice it to say, I had planned on sitting down and fleshing out the ideas after dinner tonight before turning my brain off with a TV series on Netflix (I loathe commercials, so Netflix is my chosen alpha wave inhibitor … except at the Super Bowl, then it’s the only part of the program I watch. Go figure!).

I had arrived home after some physical therapy and a routine blood test and had finished writing out a paragraph of one of those five topics when to my annoyance, I got a call from the hospital asking me to come back right away because my platelet count was now low enough for me to require an immediate transfusion. One of the side effects of both leukemia and chemotherapy is that platelet count drops precipitously. That’s a problem because platelets keep you from bleeding to death. Normal platelet counts vary from 150,000 to 450,000 per μL. My count was just under 6,000. Sigh…OK, let me finish my lunch and I’ll come back. Another needle stick in the lab to ‘type and screen’ my blood (fourth time doing this) and then an IV in the AMU (ambulatory or outpatient ward) and another enjoyable time looking at the four walls searching for inspiration. They also made an appointment for me to come back the following day for whole blood and do this all over again, minus the ‘type and screen.’ From the time the blood products arrive, irradiated, platelets take about an hour; blood takes up to six hours. It can happen faster, but I didn’t have my PICC line in and that’s quite all right! On the plus side, every time I come back to the VA, it’s like Cheers. Everybody knows my name. I even get to choose my phlebotomist more often than not. Then again, all of these people are really well-practiced and I barely feel it…but hey, Walter is the man! Face it, we have our favorites. How many of you have favorite phlebotomists? Anyone? Yeah, didn't think so.

The outpatient rooms are set up with recliners or a couple of beds.  I figure if I’m going to be there, I want the bed in case I get sleepy, which is often these days. Since most people are in and out, they typically choose the recliners. Taking a bed, I don’t have to be exposed to someone else’s TV selection and I can read in quiet or just listen to music with my headphones with the lights out. Let’s make this as pleasant as possible! When I returned for my blood transfusion on Tuesday morning at 7:00, I got my blood chemistry and count at the lab and then up on the ward, got the same room; I took the bed closest to the window again and began the waiting game. About 10:30, they began the transfusion and by that time, one other patient had gotten his dose of chemo and a second was getting hooked up. I dozed a while and was awakened when the privacy curtain between the two beds was drawn. They brought me a lunch tray, so I took my headphones off and noshed a little.  I had been feeling a little tired because of the anemia of this stage of the chemo cycle and didn’t feel like eating all of it, so I put the tray back and read a while. It was at this point that the privacy curtain was anything but private and the conversation was one that I couldn’t avoid, no matter how I tried.

I assume it was a social worker rather than a doctor because no medical terms were used, yet this was the conversation I’d heard about. NPR’s Talk of the Nation.  The advertisement about conversations with patients about death on my local station, KUER, (shameless plug to my member station!) caught my attention, but I was a bit reticent to listen to it...yet, like a train wreck, I had to and now I was actually hearing one of those conversations through the curtain, dealing with quality of life issues, determining whether the side effects of the chemo were worth it, when to have hospice come to his home and when to begin palliative care. It was a very sobering conversation, to be sure, but the thing I noted from the person who was giving information, there was never anything that was less than hopeful and positive. I was impressed not only with the conversation, but in that I was even more at peace with and even hopeful about his and my own mortality both.

To illustrate these difficult decisions, my dad tells me a story of two friends he had known since childhood -brothers who, a few years back, received the identical diagnosis of terminal esophageal cancer, both given the same prognosis of six months to live. One elected to cash out his retirement and live out the rest of his life, doing what he had always wanted and spending time with loved ones. He died almost exactly six months to the day; the other fought the cancer to the bitter end with chemo, radiation, and surgery. The second, whom I remember as a young boy (pictured above with me as a 3 year-old), received his diagnosis just before his brother's death and won only three additional months, but spent a lot of that time in a hospital bed.

I also found out that I’m among a number of people who use a blog to get how we’re feeling out on the table, to talk about (and I’m paraphrasing, but it’s so accurate in my own story) trauma of painful exams and the nasty side effects of chemo, anxiety, funny and raw photos, and the love for our caretakers and admiration for medical professionals (Here’s the story from NPR – Why Patients Should Blog About Illness and Death ). It should come as no surprise that with the events this week my attention has been drawn to the full spectrum of life – from the day-to-day quality of life to its end.

There are lot of directions life takes us, and often it takes us on a wild detour that we couldn’t possibly foresee.  I sure didn’t anticipate the fork in the road that took me down the Leukemia Interstate Highway, but I’m cruising in the middle lane on a destination that I know will take me through Seattle.  Much beyond that, I don’t know. I get to spend a lot of time with people that I wouldn’t otherwise and meet still more incredible folks that would not be part of my circle. While it’s not fun spending as much time in the hospital as I do –both in and outpatient-it truly is like Cheers. Everyone knows me and they smile when I come in and it makes it that much easier to go through it all. I’m finding that a lot of people I didn’t know were friends have come forward and been present when I needed someone to just be there and hold my hand and others who have just faded away; and I’ve found just how very fortunate I am to have the extended family I do, and so much of it local! I wish I didn’t have to come to see everyone’s true colors and so vividly through the tears of leukemia, but…it’s what I have. Take a look-see at the people around you and see who just needs you to be there. Don’t wait for something catastrophic. What’s the worst thing that could happen? You get detoured off on some tangent and cement a really good friendship in the process.

Be well, stay strong, and much love to every last one of you!

Today’s music from Nickelback – If Today Was Your Last Day

My best friend gave me the best advice
He said each day's a gift and not a given right
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last
Leave old pictures in the past?
Donate every dime you had, if today was your last day?
What if, what if, if today was your last day?

Against the grain should be a way of life
What's worth the price is always worth the fight
Every second counts 'cause there's no second try
So live like you're never living twice
Don't take the free ride in your own life

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you had?

And would you call those friends you never see?
Reminisce old memories?
Would you forgive your enemies?
And would you find that one you're dreaming of?
Swear up and down to God above
That you'd finally fall in love if today was your last day?

If today was your last day
Would you make your mark by mending a broken heart?
You know it's never too late to shoot for the stars
Regardless of who you are
So do whatever it takes
'Cause you can't rewind a moment in this life
Let nothing stand in your way
'Cause the hands of time are never on your side

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you had?

And would you call those friends you never see?
Reminisce old memories?
Would you forgive your enemies?
And would you find that one you're dreaming of
Swear up and down to God above
That you'd finally fall in love if today was your last day?

Our Mortal Frames

On Thursday, February 21, 2013, I sat across from two hematologists, who in turn, told me the really great news that I had leukemia. The first one was inclined to treat it over a few months, the second was adamant that I didn’t have those months and that I would be dead before I got through the outpatient tests. That’s a helluva horse pill to swallow. The rest of the story involves an extended stay at the other Club Med (not to be confused with the one that has the beautiful white beaches and the tropical backdrop). For the price of admission, I do get a private room and more pharmaceutical samples than the evening news advertises over the course of a week!

My sleep schedule has been realigned so that I have a lot of time for naps and when I’m not napping, say at 3:00 am, I think about all manner of profound things that you only think about in passing, in theory, or when you want to sound pretentious. But being handed a cancer diagnosis, you’re backed into that metaphysical corner and you face in real terms things like pain and suffering, why bad things happen to good people, and your own mortality. It didn’t take any time at all to figure out that none of this is my fault, but I’m going through it nonetheless.  I’m not unlike so many other people that just happen to get dealt a really bad hand in life’s game of Texas Hold ‘Em…and I don’t even have a good poker face!

Certainly, the most significant thing that I’ve mulled over is my mortality. When a doctor delivers the good news that your number is up should you elect to ignore the lab reports, it’s something you have to face with authentic seriousness.  It’s no longer something you can just toss about academically. The fact of my demise was something I had to face in real terms even though I didn’t have a single physical symptom that I knew of that fateful February afternoon.

My thoughts on faith and religion have evolved over time and while I won’t use this platform as a way to either proselytize or discredit someone else’s spiritual views, I will say that I am comfortable and at peace that I have lived a full and rewarding life. If I were to die tonight, it wouldn’t be a fearful departure from this earthly plane. That said, I have no reason to believe my time is up. My prognosis is very good based on my current physical condition and a number of other factors that my doctors and I have discussed.  I’m looking at a 70-80% cure rate and while that does leave a 20-30% possibility of not making it, I’m obviously focused on getting through this and moving on with a life full of a lot of happiness, friends, and accomplishments yet unknown. I got things to do, folks (and I have a lot of perfect moments to share with my OMT Sweepstakes winners – keep those cards and letters coming!).

I came across this quote attributed to Mark Twain today.  Some people indicate he didn’t say it, but knowing what I've read of him, it wouldn’t surprise me:

I do not fear death in view of the fact that I had been dead for billions and billions of years before I was born and had not suffered the slightest inconvenience from it.”

In a way, I feel a bit of an irreverent kindred spirit with Mark Twain and poked my own religious past in the eye yesterday in posting a Monty Python video from The Life of Brian featuring a chorus of whistling men being crucified and singing Always Look on the Bright Side of Life…on Good Friday no less. The only thing I emphasize there is my own feeling of absurdity in my situation. I mean, seriously, there’s just no way to reconcile cancer. A friend of mine (my daughter's father in-law actually) has used his own cancer to strengthen his faith and from everything I’ve read of his own journey, it has done exactly that. You can read through his ordeal here. I’ve discussed with others how they have coped and almost universally, each of us turns to that part of us that validates who we are. For some, obviously, we turn to God or a faith system; for others, we turn to that which has strengthened us throughout our lives – family, friends, and so on; and then there are others who just face it with good humor. Me? I’m probably some odd combination of all of them. We either trust that the medical science will bring us through or we don’t. We accept the well wishes, prayers, positive thoughts, and energy from others or we don’t. But at the end of it all, we are still but mortal beings and at some point, our lives have a finite end.

It’s not morbid to go there in your mind because you have to face the fact that whether it’s at the end of an illness, a traumatic injury, or advanced age, our bodies have a limited warranty…and precious few of us have the extended 100-year drive train deal! In talking with my hem/onc doctor, she pointed out that a century ago, my ripe old age of 50 was considered a rather full life. After all, Social Security didn’t arrive at the age of 62 as a retirement age because it was considered a comfortable point to leave the work force. It was the age the majority of people checked out when the system was implemented. Thankfully, medical science has advanced considerably and we’re all living a lot longer and she’s brilliant (even if she has the tendency to be a bit blunt), so I might get the extended warranty after all once I’m officially ‘cured,’ but even if I don’t, I’m grateful for the many good years I’ve lived.

Some of us men experience the official mid-life crisis where we buy something expensive that we think will make us feel young again or we feel the need to shack up with some pretty young thing to prove our virility. A cancer diagnosis has the amazing effect of trumping all that and forcing me to look not at proving anything now, but looking forward to validating the years now granted as a gift. As my grandfather used to always say before he died last June at 99,"Every day is a bonus!" Looking back with nostalgia is great and I am so glad to have the many happy memories and life lessons, but the greatest challenge and motivator is what lies ahead and it involves a much grander picture.

My music selection for the day comes from a classical piece by Johan Sibelius that has been adapted both as Finland’s unofficial national anthem Finlandia as well as a Unitarian hymn. Both the lyrics for the anthem as well as the hymn speak to me on different levels and like so many pieces of music, evoke tears.  This music video is exceptional in my eyes. The melody for the lyrics below starts at 5:33 in the video, but the whole piece is, in my eyes at least, exceptional.

A literal translation of the anthem's lyrics would be:

O, Finland, behold, your day is dawning,The threat of night has been banished away,And the lark of morning in the brightness sings,As though the very firmament would sing.The powers of the night are vanquished by the morning light,Your day is dawning, O land of birth.

O, rise, Finland, raise up highYour head, wreathed with great memories.O, rise, Finland, you showed to the worldThat you drove away the slavery,

And that you did not bend under oppression,Your day has come, O land of birth.

The Unitarian Universalist hymn lyrics

This is my song, oh God of all the nations,A song of peace for lands afar and mine.This is my home, the country where my heart is;Here are my hopes, my dreams, my holy shrine;But other hearts in other lands are beatingWith hopes and dreams as true and high as mine

My country's skies are bluer than the ocean,And sunlight beams on clover leaf and pine.But other lands have sunlight too and clover,And skies are everywhere as blue as mine.This is my song, thou God of all the nations;A song of peace for their land and for mine.

 As always, be well, stay strong, and much love to you all :)