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

  

Side Effects

I’ve come to the unavoidable conclusion that cancer is a collection of side effects, most of which quite frankly suck. How’s that for eloquence in explanation? It’s a no-brainer that certain habits, certain chemicals, certain actions create an environment where there may already be a higher predisposition toward a particular cancer – the most obvious example would be smoking and lung cancer. Even there, I do the proverbial face plant in reflecting to my nonagenarian grandfather who outright abused his body into his 80s until he finally kicked the habit and ended up living to 99. Go figure!

One of the near-lethal side effects I’ve written about has been my lungs. I do not use tobacco in any form. The doctors have all but told me that had it not been for my lungs, I’d be looking at discharge and heading back Salt Lake City as it appears the leukemia has been licked.  So, at this point, the side effect is something rather unavoidable. Gotta keep breathing, right? But, it’s a bit more complicated than that. To keep some of the other post-transplant issues in check, immunosuppressant drugs and high doses of steroids are used so my shiny new transplanted cells don’t attack my own body or vice versa (Graft Versus Host Disease). It should come as no surprise that these particular drugs have – you guessed it – side effects.

I have been taking high doses of Prednisone which serves as an immunosuppressant and has a number of side effects, some of which are vital in treating the post-transplant part of the leukemia…and it does give me a little boost of energy.  The goal is to taper this off to let my new immune system kick in and take over, but in the meantime, it’s a bit of a ball and chain in that it opens me up to infection. Another nasty side effect is that I’ve bloated to where I don’t look like my picture by some people’s estimation. I have some serious swelling in my face and legs.

And that’s just one of the many, many drugs I’ve been prescribed.

My hat is off to the pharmacists who advise the doctors on the interactions these drugs have with each other, not to mention the dosages that have to be managed on a nearly daily basis. It must feel like a horrible combination of Tetris, Operation, and Jenga. One false move and it all falls apart and my nose glows! And every single patient is different with some variation that throws the normal pharmacological protocol off just a bit.

I found out just how big of a deal two tiny 20 mg pills was this past week. It’s also the reason you haven’t heard from me in a couple of weeks.  After my bronchoscopy, the pulmonary doctors decided that I needed a surgical biopsy to confirm something they pretty much knew and in order to do that, the team consulted an expert at the Fred Hutchinson Cancer Institute who specializes in lung issues as they relate to cancer. In order to do the surgery, my dose of Prednisone would be halved immediately to allow my body to do what it would normally do in infection fighting. The side effect of the dose reduction threw me for a loop! The very next day, all I did was sleep while my daily IVs were being administered. For the next couple of days, I don’t think I’d felt quite so lousy – not sick, just BLAH! Getting out of bed was a feat that I didn’t think I could pull off, but somehow, I managed to do it. The kicker was that my scheduled reduction would be to halve the dose again in the space of only three days to get me ready for the surgery.

The hem/onc team reconsidered and decided that the information they would get from the biopsy wasn’t worth what they were seeing and the dose was put back up to the pre-consult level and it was nothing short of amazing how I felt. Two stupid little pills.

So, the docs are calling it COP (cryptogenically organizing pneumonia. OK, Latin scholars [and you military folk out there, too]. When the root word crypto is employed, it means what? It means something like “we don’t know what it is…let’s break the code.” Same logic here. It’s their way of saying they don’t know what it is. It used to start with idiopathic, but the patients broke that code and retorted, “You don’t know what it is, do you?” So now the docs just say they don’t and are done with it. I am not making this up. So, I have a new couple of pills to treat it as a bad actor and moving on.  Hopefully, this takes care of it and I can play the Osmond’s “Going Back to Utah” as my music of the day very soon.

Now, there are quite a few medications I’ve been prescribed that have been available as their sole function to combat side effects. And I gotta tell ya, I’m profoundly grateful for them. I’ve had procedures that were intensely painful or anxiety-inducing that a nurse’s little helper made a world of difference for this here patient. My threshold of pain and ability to take one for the Gipper (or whoever happened to be the surrogate voodoo doll that particular day) may be suppressed, but nurse’s little helper was gratefully received in ye olde PICC line. Zofran, Ativan, Demerol, whatever keeps me from hurling my lunch into the cute little green tubs, curling up in the fetal position from pain, or crying uncontrollably for no reason, the chemistry is welcome.

Nope…cancer ain’ no fun for no one. Sorry to burst your bubble if you're thinking otherwise.

I wonder sometimes why it is that I cry at the drop of a hat lately. It could be any trigger really, and I’m not talking about a sentimental song (although that happens often enough, too). Sure, there are enough drugs coursing through my chemo-wasted veins that make me a bit extra sensitive to things and I will very much concede that gratitude is one of those things that I’ve come to understand in a completely different way as a result of being at the mercy of literally everyone around me. After all, without the compassion of my nurses and caregivers over the past several months, I’d not likely be in the land of the living – and that is by no means an exaggeration. Clinging to the shreds of life is not something one can do solo. It takes a group of people to hold my arms up when I can’t and holding my hands when I have no strength to grip and there have been a couple of times where I fell flat on my face (literally) where I needed someone to pick me back up and I’ve needed my mama to tell me (perhaps a bit tongue in-cheek...and by no means any disrespect intended) to put me back on her lap reminiscent of the scene in The Help to tell me, “You is kind, you is smart, you is important.” We all need the reminded just who we are, especially in the worst of times that at heart, we haven’t changed and that we matter.

 

Side effect or just tapping into something a bit deeper?

Whatever…cancer still sucks.

Let’s get this lung thing licked and call it a day, shall we?

Be well, stay strong, and much love to you all…and especially you who have held my arms up, my hands in yours, and especially my heart these many months!

Music of the day from Baby James (i.e. James Taylor for you younger people…don’t tell me you don’t know who James Taylor is, please). Shower the People

You can play the game and you can act out the part Though you know it wasn't written for you But tell me, how can you stand there with your broken heart
Ashamed of playing the fool
One thing can lead to another; it doesn't take any sacrifice
Oh, father and mother, sister and brother
If it feels nice, don't think twice

Just shower the people you love with love
Show them the way that you feel
Things are gonna work out fine if you only will Shower the people you love with love
Show them the way you feel
Things are gonna be much better if you only will

You can run but you cannot hide
This is widely known
And what you plan to do with your foolish pride
When you're all by yourself alone Once you tell somebody the way that you feel
You can feel it beginning to ease
I think it's true what they say about the squeaky wheel
Always getting the grease.

Better to shower the people you love with love
Show them the way that you feel
Things are gonna be just fine if you only will Shower the people you love with love
Show them the way that you feel
Things are gonna be much better if you only will

Shower the people you love with love
Show them the way that you feel
You'll feel better right away Don't take much to do
Sell you pride
They say in every life
They say the rain must fall
Just like pouring rain

Make it rain
Make it rain
Love, love, love is sunshine.
Oh yes
Make it rain
Love, love, love is sunshine
Yeah, all right
Everybody, everybody
Shower the people you love with love

Be Prepared

During one of my outpatient IV sessions, I was the only one in the room and in a weak moment, turned on the TV. I tuned into the National Geographic channel and rather than the stunning cinematography and nature programming I was expecting, I was met with a program featuring some survivalists and their compounds. I won’t go off on a tangent about television programming, but it reminded me that there’s a whole industry out there catering to those who are planning on “the big one.” Now, that “big one” could be the earthquake that is supposed to level the city where I call home, it could be something downright apocalyptic, or just a few of these fringe survivalists National Geographic featured who want to live off the grid.

I sure didn’t anticipate meeting “the big one” of catastrophic illnesses, but to be sure, there are a number of interdependent industries catering to this particular “big one,” yet it’s more reactive than preventive – that is to say there is a huge nutritional supplement industry on the preventive side and a reactive health care system. No one really prepares to have a catastrophic illness befall them. Well, I thought that was true until Angelina Jolie pre-emptively had a radical double mastectomy to reduce her risk of developing breast cancer. Some cancers tend to be hereditary while others like mine, as I’ve been told, are just arbitrary blind dumb luck. It defies me how some people can live reckless lives, abusing their bodies with all manner of chemicals without consequence while others are borderline obsessive and end up with a debilitating illness. Yet, that is the way [fill in your favorite aphorism here].

I have been pretty conscientious since entering what we euphemistically call “middle age” about my health. I’ve made changes in my diet and lifestyle, exercised regularly, and even thought to myself every time I check out at the grocery store seeing the headlines on the health magazines, “Yeah, I do that…I’m good.” In fact the night I was ushered into the elite leukemia club, I was on my way to the gym, bag packed in my trunk. I wasn’t sporting the coveted six-pack abs, but just a few months prior, I was riding 500+ miles down the California coast on my bicycle. I was in pretty decent shape for a 50-year old grandfather.

What I lacked in that chiseled muscle, I had in stamina and ironically, as it turns out, having held on to the body fat that I have been valiantly trying to exorcise through exercise has actually turned out to be a benefit, both in terms of being able to lose weight from chemo and in the many subcutaneous injections. Whoda thunk? Well, my primary care physician did say to me, “The jury’s still out as to whether it’s good to carry a few extra pounds.” I like this guy. He not took the time to actually listen to me about turning 50, but he was persistent with his suspicions and was the one responsible for finding the leukemia. That certainly works for me. Say what you will about the VA Health Care System, but I think it’s awesome.

Still, I hadn’t prepared to be sick. Again, who does?

Having been through what I have, I will tell you that being healthy has made all the difference on how fast my body has responded to treatment, healed when something went wrong, and is now rebounding now on the downside of transplant. Some of it has to do with heredity, to be sure. I’ve been blessed with some pretty good genes, but it wasn’t obviously enough to ward cancer off completely and I have some battling with this thing yet, but I hope it makes sense to say you can be quite sick with an illness and yet be healthy just as it is to not be sick yet unhealthy. For example, I may be battling cancer and have some challenges with blood chemistry or limitations with strength, but I will exercise and eat watch what I eat and be otherwise just as healthy as before.

This is the cover of the April 1, 2013 of Time magazine. I read through the article while at the hospital in Salt Lake City. One of the poignant things I walked away with is that 1 in every 2 men and 1 in every 3 women will be impacted by cancer in their lifetimes. If those numbers aren't compelling enough to take whatever pre-emptive action about your health, I don't know what numbers will persuade you.  Far from being fatalistic about it, use it as ammunition to be healthy.

Some of the habits that got me in decent shape prior to my diagnosis will be hard to forego because the intent of the habits are to take care and improve myself. The adage of ‘no pain, no gain’ could set me back, so the new mantra is now ‘listen to your body’ to find out the safe limitations and I have to add in the numbers from my daily blood chemistry and counts and medical advice. But the impetus behind the habits will produce new ones that keep the healing moving along.

I wanted to talk about this because simply taking care of myself through a reasonable diet, regular exercise, and a good attitude have made a bad situation bearable and allowed for a much more rapid healing than otherwise. From my standpoint, it’s purely anecdotal, but there is empirical evidence to support my assertion that I’ve read in the past few months. I’ve been around a lot of other cancer patients and the number of people who don’t take care of themselves take so much longer to respond to treatment and heal, it’s worth mentioning. Moreover, these people are much nicer to be around, which makes it a really cool thing to have the nurses jockeying over who gets to take care of you because of your attitude!

Bottom line: whether you actually ever meet “the big one” you’ll be healthier and you’ll be happier. Seriously.

Music for the day from Rascal Flatts – My Wish

hhBottom of Form

I hope the days come easy and the moments pass slow
And each road leads you where you want to go
And if you're faced with the choice and you have to choose
I hope you choose the one that means the most to you

And if one door opens to another door closed
I hope you keep on walkin' til you find the window
If it's cold outside, show the world the warmth of your smile
But more than anything, more than anythin

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small

You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish

I hope you never look back but you never forget
All the ones who love you and the place you left
I hope you always forgive and you never regret
And you help somebody every chance you get

Oh, you'd find God's grace in every mistake
And always give more than you take
But more than anything, yeah more than anything

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish, yeah yeah

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish
(My wish for you)

This is my wish
(My wish for you)
I hope you know somebody loves you
(My wish for you)
May all your dreams stay big
(My wish for you)

One Foot Off The Ledge

I still want to do something a bit lighter after some rather heavy emotional weeks, but after my last posting on my reaction to the bronchoscopy, I felt I the need to close that loop. I don’t think I’ve ever had such a strong involuntary emotional response to anything in my life so many times, especially in such short order.

I've found leukemia to be nothing short of an emotional roller coaster. One day, I’m hurling in one of those little green tubs for all to hear and then something magical happens and it feels like I’m sailing along, whooping it up with my hands above my head, bravado showing for all to see as we all go down the next hill on track. I still have my not-so-great-feeling-really tired days, but thankfully, the really nasty stuff is behind me.

I’m in an outpatient status, but I’m spending the better part of my day at the hospital being infused with an electrolytic cocktail of potassium, calcium, phosphorus, and magnesium each morning before my anti-viral Foscarnet. I get this drug instead of Gancyclovir which I had been able to get infused in the hotel because after prolonged use, it took my blood chemistry down. The Foscarnet is manufactured in England and imported here. Afterward I get another bag of saline to protect my kidneys, so I have an IV pole for a dancing partner for about 5 ½ hours a day. So, if everything moves along, I can get back on the road to the hotel around 1:30 or 2:00. It makes for long days...and this assumes I don't get other things like platelets, other blood products, or another infusion that my morning tests said I needed.

I'm being prepped for the procedure. The camera is about the width of a pencil and the images are projected on these screens. Of course, I don't remember a thing, but I'm sure it was captivating.  Mr. DeMille, this is NOT what I meant about a close-up!

As a side-note, I can't wait for my hair to grow back. You could use the reflection on my head as a mirror!







I'm sucking down some Lidocaine to numb my lungs in this pic. I had tried to be the funny guy and play with the nebulizer like a flute, but my photographer missed his Kodak Moment®.

It’s a routine, but there are no breaks and I still have the mother of all pill boxes and my med-induced high blood sugar I need to monitor. It’s not enough to simply say that I have to take a certain medication three times a day because there are interactions that prevent something quite that simple. so I may have to offset one pill by an hour or two or with/without a meal. It gets complicated. Blood sugar is treated like a type I diabetes with insulin and I have two different types I have to work with based on the time of day and the particular sugar level.  Everything is closely regulated by the MTU pharmacy. Maintaining proper blood chemistry truly is a 24/7 proposition right now. It’s tiring, often wearisome, but it’s life right now.

But I still don’t have to sleep in the hospital…and that’s a good thing.

 

Now, I did say I don't sleep at the hospital, BUT I guess this would be the exception.

Prednisone is one of the many medications I take. It’s a corticosteroid and also acts an immunosuppressant. I take these in rather high doses being a transplant patient. The big thing it does is ward off Graft Versus Host Disease (GVHD). I used to be at more than double the dose I am now, but in order for me to escape the Puget Sound VA Health Care System’s gravitational beam and return to my home in Utah, I have to be off of these bad boys. So, the next step in this Rube Goldberg contraption is to further taper off the steroids and to do that we have to make sure my lungs are able to handle the reduction in the dosage (GVHD will often attack the lungs, hence the reason for pulmonologists involved and the need for the bronchoscopy). You can see the delicate balancing act on which all this hinges, now, right? Putting it all together took some time for me, too.

That said, having four white-coated pulmonologists tell me on Thursday they wanted to do a bronchoscopy on Friday, for whatever reason, was not a welcome proposition. Just the word made me shake involuntarily because no matter what mental machinations I tried to invoke, all I could see in my mind’s eye was the day I was whisked away to the MICU after a room full of doctors and nurses put an oxygen mask over my face, pumped the thing that looked like a toilet float to make me breathe and sedated me. I awoke in a strange place with a machine breathing for me and every time I needed to cough, I felt like I was drowning. The bronchoscopy they did en route to the MICU had involved a drug that paralyzed me so I could hear and feel everything but do nothing. All I can tell you it was the most terrifying thing I have ever experienced and nothing any of these well-meaning doctors could say could lessen that memory. I was officially freaking out despite their assurances that this would only take an hour, that no paralytic drugs would be involved, that I would remember nothing, and that it was really no big deal.

I went home after my routine IVs were over on Thursday, only to be greeted by a phone call to confirm scheduling of the bronchoscopy for 1:00 p.m. Friday, November 1. I told them I would haunt their dreams forever if it wasn’t exactly the way they told me…after all, it was Halloween. Again, I was assured six ways to Sunday that this would be quick, painless, and over in less than an hour and I would *not* be getting any kind of paralytic drug. Nothing per oral after midnight except my meds as directed by my outpatient team. Adding insult to injury, yes, I was really hungry!

I slept most of the morning in the outpatient recliner while getting my daily IVs – partly out of emotional escape, partly because of my inability to sleep through the night anymore. Once it was my turn to see the doctors for routine rounds, they asked me how I was doing and the irony was just like the previous day, I had a lot of energy. Physically, I was doing well…emotionally, I was a wreck and I broke down shaking and unable to hold it together. Thankfully, they all knew what I’d been through and the medical team really holds us as a big family and truly are rather tender with us – especially the nurses of course.  The attending physician, Dr. Wu, is awesome anyway.  He’s the one of the three attendings that seems to actually give straight answers instead of hedging around. Since it was the first day of the month, the new fellow was part of rounds.  She was pretty responsive for not knowing me or my history, but pledged to make sure she would make this a non-event.  They gave me some Ativan about 30 minutes ahead of my shin-dig, which officially put me under the influence of a debilitating drug and I was now no longer qualified to drive my IV pole to the pulmonary suite, which is about 100’ from the MTU where we were. I got wheeled over like a proper cancer sicko.

The attending physician from the ICU came in the room with the doctor that was going to do the procedure and I told him I had one word for him:  “E-I-E-I-O”.  He laughed and said, “You really were awake for the last procedure. I admitted that I had a little help on the clue to “Old McDonald.”  He told me that if I could remember the song they sang during my procedure, he’d give me a $100 bill (and he showed me the Benjamin to prove it). I didn’t remember that part of it, but I was very much awake and paralyzed and told him so.  He was shocked to know that and was profusely apologetic along with the other pulmonary people who were involved.  He again assured me this would be less than an hour and there were absolutely no paralytic drugs involved.  So, for the next 15 minutes, the technicians and nurses gave me different kinds of drugs to numb up my lungs, throat, and vocal cords so I wouldn’t feel anything, letting me know what they were doing every step of the way. I can’t say that I knew when I succumbed to the anesthesia. I just know I woke up and they said I did fine. 

Suffice it to say, without the emergent situation and 20 some-odd white-coated individuals in the room, the level of trauma was nonexistent. The technicians were very calm the whole way through…and since I was already doped up, that didn’t hurt either.  The end of this is that I should find out if it’s some sort of pneumonia, infection, or something else probably on Wednesday. All of the possibilities end in the same:  if it’s anything, it will be treated with some sort of oral antibiotic.

In any event, the bottom line is I’m OK and not quite as traumatized as before…although I gotta tell ya I’ve not quite had that kind of emotional response in anything, ever. I’m not over the whole thing yet because it’s still linked to those two very bad trips to the MICU, but if I have to have another bronchoscopy and they take me through it like this past one, I’ll be OK with a little nurse’s helper ahead of time!

It all feels very arbitrary some days and very logical others. What I do know is that I know my strength is returning incrementally and I’m able to sleep a bit more rather than in fits and starts. I have some days where I feel really great and I still have my days where I’m just exhausted and I understand that’s just something I’m going to have to live with over time and learn to listen to my body to prevent going backward.

Moving onward and upward…be well, stay strong, and much love to you all.

Music today from Rob Thomas – “Little Wonders”

 

Let it go, let it roll right off your shoulder
Don’t you know the hardest part is over?
Let it in, let your clarity define you
In the end we will only just remember how it feels

Our lives are made in these small hours
These little wonders, these twists and turns of fate
Time falls away but these small hours
These small hours still remain

Let it slide, let your troubles fall behind you
Let it shine until you feel it all around you
And I don't mind if its me you need to turn to
Well get by, its the heart that really matters in the end

Our lives are made in these small hours
These little wonders, these twists and turns of fate
Time falls away but these small hours
These small hours still remain

All of my regret will wash away somehow
But I cannot forget the way I feel right now
In these small hours
These little wonders, these twists and turns of fate
Yeah, these twists and turns of fate!

Time falls away, yeah but these small hours
And these small hours still remain, yeah
Ooh they still remain
These little wonders, oh these twists and turns of fate

Time falls away but these small hours
These little wonders still remain

Brick to the Back of the Head

I had planned on today (Thursday, October 31) being a rather light writing day after having had a couple of rather heavy emotional weeks. And it seemed the stars were aligning for that to happen. I had spent Wednesday night just listening to the music I had selected for over the time I've been writing this blog and the Universe dealt me a really nice hand in the morning. It started out as a really great day. I slept better than I usually do, I awoke with a lot of energy and had a good breakfast before heading off to the hospital with my son. That proverbial spring was in my step! Even the nurses commented that I looked good. To top it off, since today wasn’t one of my regular clinic days, my time at the VA was spent getting the usual IVs, but again because it was a good day, one of the IVs has been replaced by an oral medication, so I actually had one less IV. Bonus!

Good days start with good beginnings!

And then…it all came crashing in.

Indeed!

I have been getting weekly PFTs (Pulmonary Fitness Tests) which gage how quickly and how deeply I can breathe. We do these for a couple of reasons. The first is to compare them against my intake tests and we're also doing them to taper off the high dose of steroids I'm taking. These tests take all of five minutes and I’m done.  The technician who conducts these tests told me that my tests have been virtually identical, but if you look really closely, the doctor pointed out that my results have been about 1% less by the week. That doesn’t sound like a lot and it really isn’t, but over time, yeah, it’s not a good thing, so the thing that got me shaking was when a group of white-coated pulmonologists marched into the outpatient room and pronounced that they wanted to do a bronchoscopy (pictures will be forthcoming if I can coerce someone or at least guilt someone as long as no faces are in the pictures...except maybe my bloated one).

Let's hope my lungs look a lot like this tomorrow!

Let’s move back in time just over a month ago and that same pronouncement seemed innocuous enough, except that I had two of them, one of which I had stopped breathing prior to it and both ended up having me intubated with a ventilator doing my breathing for me in the MICU. Also, one of them had me literally paralyzed. I don’t think I’ve been so terrified in my life. Seriously.

The panel of white coats that visited me today assured me up and down that this wouldn’t be the case and I’d be out of there in about an hour just like Lenscrafters and they wouldn’t use the paralytic drug. Besides, I told them that since it was Halloween, I’d haunt their dreams forever if anything bad happened!

Academically, I can understand this is not a big deal

...and in fact my buddy from Salt Lake who was here last week had one of these things while he was here

...and I understand it’s totally routine

...and I understand from my nurse that it’s OK to be a bit unnerved or scared by it

...BUT I have to say the only thing that comes to my mind is the trauma from the last two where I awoke in a strange place and being told later it was nothing short of a miracle that I survived. 

THAT has been going through my mind all day long, followed by shaking and tears.  Is that what PTSD is? If it is, I have a new respect for my fellow vets who have traumatized and suffer from it. Yet one more bit of alphabet soup I’m getting first-hand experience with. Lovely, huh?

So, this afternoon (Friday, November 1) at 1:00 pm PST, I get to find out if there is something called aspergillosis, a kind of pneumonia, or infection or nothing. Now, all of these are somewhat common in immunosuppressant people like me who are on the post-side of a bone marrow transplant and they all can be treated by antibiotics and I’m not feeling sick, short of breath or displaying any other symptom. So, bottom line, it’s not serious (at this point), but rather for me, it’s simply the procedure itself. So at the end of the day, it’s getting through having this camera pushed down into my lungs to take a look-see at the fun that awaits it.

For some people, this really isn’t a big deal and as I’ve written in the past, my tolerance for discomfort and my threshold of pain has really ratcheted up, but because of the trauma associated with this one, I’ve struggled…a lot. Add to it, the sheer length of time I’ve been dealing with the leukemia, I’m getting tired of it. I really need a break from the 24/7 nature of this thing where I can take a day off, enjoy something that perhaps I used to take for granted, do something that doesn’t make me feel like I want to just keel over from exhaustion, not feel limited because going up a flight of stairs is so damned hard. Think about that the next time you simply go up a short flight of stairs, get out of a car, look at your head of hair in the mirror or something else that is just...normal. Yeah, yeah, I know, this, too, shall pass and I know it will. It's just really, really  wearisome after all these months.

I don’t really like complaining. It’s not my style, but it’s reality and I know that the road ahead is still got a lot of miles on it and I don’t have much of a choice but to walk it gladly, willingly, and eagerly, knowing that while I’m on it, I get to live and that's a good thing, isn't it Martha Stewart?!

At least my day started out with great joy and energy. My intent today was to share some playlists of music that had carried me along when I just needed a little extra something or even cry with a bit of joy because music has been a big help during these struggles.  We’ll get there.  In the meantime, I push through my own struggles and thank you for hanging with me…and if you haven’t figured it out, I really need you right about now.

OK, this is a short one today and I’m NPO (nothing per oral) after midnight so someone can push their toy down my throat. Damn, I'm hungry! *sigh*

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

Music for today is from Evanescance “Bring Me To Life” … yeah, my mood is a bit out there today.

How can you see into my eyes like open doors?
Leading you down into my core where I've become so numb
Without a soul, my spirit sleeping somewhere cold
Until you find it there and lead it back home

Wake me up (Wake me up inside
I can't wake up (Wake me up inside)
Save me (Call my name and save me from the dark)
Wake me up (Bid my blood to run)
I can't wake up (Before I come undone)
Save me (Save me from the nothing I've become)

Now that I know what I'm without
You can't just leave me
Breathe into me and make me real
Bring me to life

Wake me up (Wake me up inside)
I can't wake up