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.

Camaraderie

When I raised my right hand and entered the elite club called the US military, the term comrade had a pretty bad rap. The Iron Curtain had a little rust, but Ronald Reagan had yet to tell Mr. Gorbachev to “tear down this wall” and the majority of my warfare training was geared toward the “evil empire” that was the Soviet Union and its satellites. You won’t see the USSR, Yugoslavia, or East Germany on a map anymore and most students probably don’t even know what it is or was. If you’re a child of the 70s or before, you’ll remember the communist scare and a lot of the terminology.  The term, ‘comrade’ still carries with it a bit of baggage, yet what it really implies is something that I think we all could use…and it sure feels like the right word when I’m trying to communicate my leukemia struggle to someone else.

Mind you, I’ve long since rescinded the pity party invitations, but I’ve been told by a lot of people a number of times that it’s OK to have a bad day. Sure, be positive, but let there be no doubt, cancer is serious and it’s not in any way, shape, or form, fun. But my point isn’t just about finding someone with whom I can kvetch (you were wondering when that word would come out, weren’t you?) After all, we all do it. Think about it.  You go to a party with co-workers and what do you do? You complain about work while your ‘plus 1’ looks on politely but has no clue of what you’re talking about except maybe the names of the people and a situation or two. We all have a need to commiserate and really what I’m trying to do is no different, but in my case, just substitute the word, “survivor” and you’ve got a rough analogy. We all want and truly need that camaraderie.

The thing I’ve struggled with my life though is to not be labeled or defined by any one thing or group of things. And it’s the same in this case. I may be fighting cancer and be called a “survivor,” but that doesn’t define me. I served in the United States Navy and am proud to be a veteran, but that doesn’t define me either. We all have things that we do professionally, spiritually, or casually of course. I’m thrilled to have so many different facets to who I am, but I would shudder to have one of them overshadow the whole of who I am. Thinking of gem stones, the thing that makes them brilliant is how the different surfaces catch and reflect the light. Having only one reflective facet makes a gem no more remarkable than a pane of glass.

I’ve known from the outset of my diagnosis that it would truly be transformative and that I’d be gaining another facet of sorts. We all know change is never easy and it often involves a degree of discomfort if not outright pain. There is the proverbial blood, sweat, and tears and I’ve experienced them first-hand as I’m sure you have when in the middle of things. And that’s the rub, isn’t it: not knowing what’s next, what the outcome is going to be, what the shape of things will look like, where that next facet will be carved. Doctors can give me a general idea, but they don’t know any more than they did at the beginning.  They just know the direction they have to send me to keep me alive. It’s like driving down a road in the fog.  You can only go so fast and the high beam headlights will only blind you, so you move forward and you move at the speed that will keep you on the right path and hopefully, you have a couple of comrades along for the ride who can help out.

I have my final infusion for this round of consolidation chemotherapy shortly and as long as everything continues to go as well as it has, I will be discharged in the morning and I can continue my convalescence at home. My week here at the VA hospital has been one of growth for me even though it hasn’t been easy. The doctors I had come to know over the past month are completing their rotation and moving to their next stop. I’ve made a couple of new friends that will extend outside these four walls. I’ve also found out that the nursing staff is watching out for me more than simply being another patient. That may be a small distinction, but the distance between being cared for rather than just being assigned as part of a duty is huge.

To have people along with you, regardless of how close they are, during this transformation has not just meant a lot, it has kept me going. Sometimes it has translated into an introduction to someone who is a bit closer to the process and other times, it’s just someone who sends a good word. But just as everything adds up when I’m feeling overwhelmed, the good will that comes my way is also cumulative and it has an uncanny way of greeting me when I need it the most, when I’m emotionally fragile, when I’m weary of putting on the brave face. It’s times like these that you all hold my hands in solidarity, in camaraderie.

Today’s music is Sting’s Fragile

If blood will flow when flesh and steel are one
Drying in the colour of the evening sun
Tomorrow's rain will wash the stains away
But something in our minds will always stay
Perhaps this final act was meant
To clinch a lifetime's argument
That nothing comes from violence and nothing ever could
For all those born beneath an angry star
Lest we forget how fragile we are

On and on the rain will fall
Like tears from a star like tears from a star
On and on the rain will say
How fragile we are how fragile we are

On and on the rain will fall
Like tears from a star like tears from a star
On and on the rain will say
How fragile we are how fragile we are
How fragile we are how fragile we are