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