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)

Not Just An Academic Exercise

There are only so many ways to say, “Cancer Sucks,” but it doesn’t change the facts about the illness and it doesn’t change how I got mine and it doesn't change who else will find themselves dealing with all the less-than-fun aspects of “The Emperor of All Maladies.” With some exceptions, it just seems so random. Having been on the cancer battle lines most of the year, there’s just no getting around it and it seems like everywhere I turn, people I know are battling with me not simply as someone who is encouraging me in my own fight, but as someone who now has entered the fray with their own cancer. It's kinda like all of a sudden noticing the model care you just bought when before they were all invisible.

I gotta say though for me, it’s a truly helpless feeling to witness someone’s processing that they have cancer, but all I can do is be candid in offering what I have gone through and be a source of encouragement, hope, and empathy to others who are now in the fight…and that’s provided I’ve been invited to be part of that discussion.

 

The aspect of cancer I haven’t been able to move past is the obvious – cancer kills. Academically, in my mind, on paper, I get it. Naturally, that’s one of the first places I went when I made the connection that leukemia is a blood cancer. What were the statistics that I would survive? Wasn’t it enough that the hem/onc doctor in front of me pronounced a death sentence on me of 90 days? I just couldn’t wrap my head around it all. Shoot, I didn’t even know the questions to ask. My prognosis was pretty positive with a bone marrow transplant, but even with that, I almost died twice in the space of a week. And yes, I still haven’t wrapped my head around that either. I just haven’t quite come to terms with it except that’s what people have told me. It has been a purely academic exercise, yet it really happened.

Then there are those who really, no-kidding, don’t make it.

Twice this week, I’m facing that situation and I’m truly at a loss for words, but I can’t avoid it. You see, walking into the MTU, it’s not unlike being a big family.  The caregivers and the patients alike are all part of something bigger than ourselves and we have a good idea of how everyone is doing. We can’t help but get emotionally attached to each other. People knew more about my situation than I did when I emerged from the MICU and eventually into outpatient status. Many of us stay at the same extended stay hotel and we swap stories and ask after one another. Earlier this week, I met up with a caregiver outside the laundry room who was commenting how good I looked. I asked after her husband and she was rather candid in that he wasn’t doing so well as he was out of remission and rather disappointed because of where that put him in the transplant process. Somewhere inside of him, he knew there was more to the picture and even said that he might die. She, rather matter-of-factly acknowledged as much that it was a possibility, not knowing that the next day, she would be getting the news that he, in fact, was no longer a good candidate for a transplant, which essentially translated into him being now a terminal patient with just a couple of months left on this blue ball. I was just outside the MTU moments after she received the news.

What do you say?

I sure don’t know…except to go with my gut and simply be honest. It’s a tough thing to face death, but I have to say that now having done exactly that, it gives me a sense of peace, but clearly others aren't where I am. I can't impart how I'm feeling to someone else and things can change, too. Shocking, end-of-life news is something everyone processes differently. I’ve said it many times and I’ll say it again, I have a lot left to do on this earth before I meet my demise and I honestly hope I get to do it all. But just like the caregiver I refer to above, the possibility that I may die before then is a possibility.

But I don’t know. I really don’t, so I asked a couple of nurses on the MTU how they've handled the situation over their tenures. Both have been working in transplant for years and it wasn’t all that long ago that the kinds of conditions that call for bone marrow transplants weren’t as successful as they are today. Advancements in pharmaceuticals have saved countless lives, but the nurses had to be the one to get families together to say their good-byes many times as the doctors either couldn't or wouldn't. In their experience, it again came down to being honest with the patient. They said that more often than not that the patient already knew things were pretty bad before it came to the point of ‘the talk’ and getting the family to a point of releasing their loved one with their blessing to move on.

Death and dying aren’t topics that people enjoy talking about, but evading them can be insensitive at best. Having come close to dying, myself, I can appreciate how important it is to make final arrangements so that those who are left grieving don’t have to second guess me, so yeah, I think it’s vitally important that people know what I think both in the legal and personal constructs. It’s not a morbid topic, unless of course, I were to dwell on the topic. With the experiences I’ve had this past week with incurable forms of cancer striking people I know as well as a couple of others where others are now starting their dance with the big “C,” I’m scratching my bald chemo-affected head a bit more than usual. Suffice it to say, there just seems to be no element of fair play, but then again, when did anyone say that cancer ever plays fair?

You can imagine that I’m a bit bummed about watching a member of our MTU family head home to live out the remaining few months he has…but at least he has a couple of months left. It’s definitely not a glass-half-full moment, but there is something in that glass. I’m bummed that I’m hearing from people I know are finding they are now fighting cancer like I am. But I’m still filled with gratitude that I’m making it and that there’s hope ahead and that there’s always some modicum of hope for those just finding out they’re now enlisted in a battle they didn’t choose either. I still don’t know what to say to the dying except the honest truth from my own heart because it really isn’t some academic exercise.

It’s very, very real.

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

Music for the day from Craig David – Rise and Fall

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I always said that I was gonna make it,
Now it's plain for everyone to see,
But this game I'm in don't take no prisoners,
Just casualties,

I know that everything is gonna change,
Even the friends I knew before me go,
But this dream is the life I've been searching for,
Started believing that I was the greatest,

My life was never gonna be the same,
Cause with the money came a different status,
That's when things change,
Now I'm too concerned with all the things I own,
Blinded by all the pretty girls I see,
I'm beginning to lose my integrity

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I never used to be a troublemaker,
Now I don't even wanna please the fans,
No autographs,
No interviews,
No pictures,
And less demands,
Given advice that was clearly wrong,
The type that seems to make me feel so right,
But some things you may find can take over your life,
Burnt all my bridges now I've run out of places,
And there's nowhere left for me to turn,
Been caught in compromising situations,
I should have learnt,
From all those times I didn't walk away,
When I knew that it was best to go,
Is it too late to show you the shape of my heart,

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

Now I know,
I made mistakes,
Think I don't care,
But you don't realize what this means to me,
So let me have,
Just one more chance,
I'm not the man I used to be,
Used to be

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

As a post script, here are some thoughts on what to say to someone who is dying. It’s not the end-all, but it’s a good start.

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

A Day in the Life

When I got my diagnosis, I really couldn’t wrap my head around what leukemia was. I had no idea that it was a blood cancer, and I certainly had no idea that treating this bastard was such a long-term affair.  There have been of myriad of complicated, interrelated details that boggle the imagination, literally hundreds of medical and support staff rotating from one organization (within the VA system and other institutions), thousands of shiny, jagged pills, IVs, syringes, scans, probes, swabs, tests, biopsies, consults, and so much more. How does anyone keep track of it all? The simple answer is not that I have to rise to the occasion, but rather work together with them all and my caregiving team to make it work.  No one can do this solo. Just ain’t no way, my friend!

I thought what I’d do today is give you a guided tour of what a routine day is like to give you an idea of all the people involved as well as some context of what life is like. It’s very much like an inpatient day except that I get to leave when the doctors give me the OK that I’m still healthy and self-sufficient to be an outpatient at the end of each day. It’s obviously a big bonus for the little things like choosing what kind of food you want to eat, sleeping in a bed that is more comfortable and not getting awakened or interrupted by someone wanting to poke, prod, or otherwise molest you at any given hour! Yeah, big bonus there. Remember, I have a great soft spot for nurses, but checking my vitals at 1:00 a.m. when I’m actually sleeping? Ah, yeah, those were the days…and hopefully not to be repeated any time soon.

The bone marrow transplant process is nothing short of a chemical miracle in my mind. It’s hard for me to really grasp the significance of this little bag of someone else’s stem cells being infused into my arm being fruitful and multiplying into enough of a life-saving force to engraft to my own body and be formidable enough to fight off any remaining leukemia that might be in my system after that lovely toxic chemical goodness has done its good and perfect work on decimating my own immune system…yet it is and it has! It is a truly drastic and extreme life-saving measure and as I was told before I got here, I would be taken to death’s door and brought back. Once again, I was quite literally there and I’m back and working through the process toward restoration and healing. 

The transplant process here has a rough timeline that takes about 100 days, some more, some less depending on how one’s body reacts to all the pharmacopeia and of course the transplant itself – and there is a whole mess of it every day to keep on top of. Day 1 is actually the day one receives the stem cells even though the treatment begins before getting them.  There are variations on the transplant depending on who provides the stem cells. An “autologous” transplant, for example is where the patient provides his or her own stem cells for later use while those like me who needed a donor receive an “allogeneic” transplant. Then there are two subsets of each of these – a mini or a full myeloablative transplant. I had “the full monty” as people were calling it because of my younger age and ability to withstand the more arduous process. Trust me, it was indeed an arse-kicker, but there should be fewer complications down the line and I skirted the one key part of treatment that I just couldn’t reconcile: total body irradiation.
 
So, 42 days of inpatient fun later, I was discharged to be on outpatient treatment. What, you may ask, do I do during these days post-transplant at the hospital each day? Let’s begin with my virtual tour from the fabulous Marriott Towneplace Suites in Renton, WA! The VA puts my sons and me up in a two-bedroom suite with a small kitchenette. It’s a comfortable space and the people here have taken good care of us, but you all know we’d rather be home…not a bad home away from home considering the circumstances.



I have always been squeamish about self-injections, but thanks to the high-dose steroids, my blood sugar is off the charts. So, four times a day, I have to check my blood sugar and inject myself on a sliding scale of insulin just like someone with diabetes.  My stomach isn't so pretty right now and for all the effort I have put in to trying to flatten my gut out, I'm actually rather grateful to have a bit of belly fat right now!  This is a temporary thing, thankfully, and as the steroids are tapering off, this will go away as well.  For the time, it's part of my daily regimen.

 

My day starts with taking care of one of the side effects of the high dose of steroids I’ve been prescribed – monitoring and correcting for high blood sugar. And no, dear ones, they’re not that kind of steroids.  If anything, they do the exact opposite and are eating away my muscle so I have to be mindful to be active. Someone had posted on my Facebook page that with all the weight I was losing and the steroids, I'd be ripped when I came back.  I can only wish.  But, in my case, just like a diabetic, I get to inject myself with insulin four times a day as the steroids throw my blood sugar through the roof. Before treatment, my blood glucose levels were absolutely normal. For now, I get to poke my fingers to test for blood sugar levels and then based on how high the numbers are inject myself with the appropriate amount of insulin before each meal and before bed. Lovely way to start the day, huh? I also check my blood pressure and temperature and I’m eating quite a bit differently than I might have otherwise. This is truly an education in nutrition and self-control as well as the medical side of things as we go along.

 

Yup...it's a typical Seattle morning - rainy and / or foggy! Our commute route takes us past one of the many, many, many Starbuck's shops. Austin, my chauffeur, knows them all and not so surprisingly, they know him!

 

 

 

 From the front of the Seattle VA Hospital - As much time as I spend here, it feels like home away from home...except that it isn't. It's actually quite the sprawling complex behind this façade.
 

After a quick shower, I run over to our hotel continental breakfast and grab a quick bite and take about 20 different pills for various things including liver, kidney, electrolyte, and immuno-suppressant functions. Anti-rejection drugs come along later in the day after my blood draw at the hospital.

Off to the hospital in the characteristic rain and we are typically on the surface route instead of the Interstate. The traffic going toward the city isn’t unlike my memories of SoCal, but not quite as many lanes to accommodate all the many cars.  I won’t take the time to criticize Seattle drivers, but I will say they’re a lot nicer face-to-face. Let’s leave it at that.


At the hospital, it’s back to the Bone Marrow Transplant Unit where it feels like a family and Cheers where everybody knows your name. There, we take our turns in the outpatient room, getting our routine blood draws and the IVs that are on our treatment plan. In the picture here, I’m getting my PICC line dressing changed. That’s a weekly occurrence, but it’s painless and it keeps me from getting stuck with a regular IV needle every time I come in, so while it really hurt going in, it has saved me a huge amount of discomfort over the months in getting blood draws and IVs otherwise.  Other patients get something called a Hickman port which is essentially the same thing I have except it is installed over the chest and has three “lumens” or ports instead of my two. Since I was an allogeneic patient, I didn’t need the Hickman. The amount of time we spend in the outpatient room can vary on the number of different treatments we need during the day. For me, it’s routinely two hour-long IVs, the blood draw, and occasionally, I get something else. By the time I’m done, it’s about noon.  The lab turns around the blood chemistry results pretty quickly and we’ve all been taught what to look for.



This is the Bone Marrow Transplant Unit where it all happens - 4th floor. Behind the doors to the left is the ultra-sterile environment where I lived in a fishbowl for 7 weeks (less my two unplanned excursions to the MICU) and where I go each day for my outpatient visits.



There are four of these comfy chairs that recline while we get our IVs (could be any number of things. Some patients get chemo, but since I had a full myeloablative transplant, I'm very much finished with chemo (the crowd roars ... or at least I do!) typically get a daily antibiotic and antifungal. Here, my nurse is doing a weekly PICC line dressing change.

During this time as well, and more to the point of why we come in each day is to see the attending physician and his coterie to again, make sure I’m on the up-and-up and moving along according to plan. These visits are essentially identical to ‘rounds’ that these same doctors do if I were inpatient. He has with him, the most current hem/onc fellow, a staff pharmacist, the outpatient nurse, nutritionist, and a few others that don’t identify themselves.  They pepper me with questions on how I’m doing, check my mouth for sores, listen to my lungs, check for edema in my legs, and make some small talk. At this point, it feels very cordial, but it’s not unusual after these sessions to get a call to adjust medication by a little bit or to get additional appointments to ensure peripheral issues aren’t surfacing. They also interface with other departments to ensure everyone is on the same page. It’s actually pretty amazing all that happens between everyone.

At some point during this process, I get “discharged” to go home again. There’s a collective sigh and exodus by all of us outpatients when it happens as it is a legal sort of thing. If we leave early, it’s essentially something called “AMA” (against medical advice) which is obviously rather serious for a cancer patient under active treatment and everyone gets their hand slapped rather hard. It’s not unusual for us to be held back awaiting medication changes, so we’ve waited several hours. Hey, I’m not sleeping there, so I’m quite all right with it. I try to see others while I’m there to make the best use of our time.  They also have a cantina in the basement that makes some pretty good sandwiches for cheap. My son and I have found them to be excellent!

If we can get back on the road by 3:00, we can make it back to our hotel room in decent time without the traffic and will find some way to get out and exercise, even if it’s to walk the mall. Seattle really is a rainy place and I’m cognizant of the sunlight restrictions, so the mall is a good place to get some walking in, at least during the week days.  My immune system is such that I need to avoid large crowds, so the weekend when the mall is crowded can be problematic for me.

Evenings are spent with my two sons, although we often tend to be three bachelors in the same room. We are all electronically engaged, but somehow in the moment together. I’ve been trying to make sure we do *something* together each night while I’m connected to my evening IV. We have a completely stocked nurse’s station that has occupied the kitchen table in our apartment as you can see in the photo, replete with three separate IV pumps, syringes for insulin, chemo-safe gloves, saline flush syringes, and a panoply of meds to keep my monster box of pills fully stocked. The fun just never ends…but then again, that’s why we’re here.

Behold the Nurse's Station replete with IV pumps, monster pill box, chemo safe gloves, syringes for all occasions, alcohol wipes, and a stack of documentation to tell us every possible side effect there is on all he meds.
 

Somewhere along the way, I start to crash, so I give myself my final injection for the evening and get into bed, only to sleep for about 3 hours at which time I find myself reading for another few hours and try one more time to get a bit of a nap in before starting over. 

It’s a highly-regimented day, so you can imagine how a ‘normal’ day will feel…mostly because you’re living it. We’re about halfway through the 100-day cycle and hope that when December 2 rolls around that the car is headed eastward on dry roads back to Salt Lake with some happy guys singing campfire songs (or at least along to the stereo!), so think happy thoughts about my treatment that it continues to go well and without any hitches along the way. We’ve had enough to last a lifetime!
So for now, one day at a time…hope you enjoyed my abbreviated (even though this was a bit long today) virtual tour of what I’m doing these days.

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

Music for today – Home Life by John Mayer

I think I'm gonna stay home
Have myself a home life
Sitting in the slow-mo
And listening to the daylight
I am not a nomad
I am not a rocket man
I was born a house cat
By the slight of my mother's hand

I think I'm gonna stay home

I want to live in the center of a circle
I want to live on the side of a square
I used to be in my M-Z now
You'll never find me cause my name isn't there

Home life
Been holding out for a home life
My whole life

I want to see the end game
I want to learn her last name
Finish on a Friday
And sit in traffic on the highway
See, I refuse to believe
That my life's gonna be
Just some string of incompletes
Never to lead me to anything remotely close to home life

Been holding out for a home life
My whole life

I can tell you this much
I will marry just once
And if it doesn't work out
Give her half of my stuff
It's fine with me
We said eternity
And I will go to my grave
With the life that I gave
Not just some melody line
On a radio wave
It dissipates
And soon evaporates
But home life doesn't change

I want to live in the center of a circle
I want to live on the side of a square
I'd love to walk to where we can both talk but
I've got to leave you cause my ride is here

Home life
You keep the home life
You take the home life
I'll come back for the home life
I promise

 

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."