Tentatio

struggle, spirituality, absurdity

Category: Cancer Thoughts (page 1 of 2)

Thoughts on Remission

I have no idea where I am going with this but feel compelled to write. So bear with me. Or don’t, it’s your choice. That’s the danger (from my perspective) of blogging.

So I got the news that I have achieved a 3-log reduction in the presence of the Leukemia mutation. Or something like that, but I was never great with Biology. Suffice it to say, this is the goal for treating my kind of Leukemia (CML), and within this threshold the disease is considered well under control. My next step is for the mutation (actually it’s the presence of a protein, or something like that) to be undetectable by the machines that do the detecting. That won’t necessarily mean the mutation is gone, but rather that it is so low that the machine can’t find it (we are on the molecular level at this point).

It’s strange, though, because I still sense that I have a ways to go in terms of dealing with the emotional side of having leukemia. For those of you that know me well, this summer has sucked horribly. I’ve been sick and injured for most of the season, and then I was forced to try a different leukemia drug because the original one was no longer effective. Not to mention that I struggled with the side effects of that original drug.

Now I feel better than ever, and I actually have more energy now than I know what to do with. But this morning, a friend of mine mentioned in passing that he had had some blood work done and the doctor said he wanted to run another, more specific test. It ended up being nothing (except that my friend needed to lose a little weight), and yet when I heard this story being told, I almost had a small heart attack at the idea of him needing more blood work. I’ve been down that road, and it didn’t go well with me.

It was like a small panic attack induced by PTSD, or something like that. I can be a little dramatic at times.

But it did tell me that I have a ways to go. I still get depressed, and who wouldn’t? After the leukemia, the multiple deaths of loved ones, the car wreck, my cat that died, the million kidney stones, and a few other things, this shouldn’t surprise me.

It all reminds me of how messy life really can be. I get impatient with movies that have nice, black and white, neatly wrapped endings. How is that anywhere near life-like? Real life has real struggles, real joy, and everything in between – and often at the same time.

I am in remission. That’s incredibly good news, but it isn’t the end of the story, nor is it the beginning of another. My good news simply is. I will carry this damned mutation all my life, and my life will likely be long.

Learning to live in that tension takes serious chutzpah. I pray that God grants me some of his…

Ashamed to Talk About Leukemia

Until recently, I used to feel a bit ashamed to talk about the fact that I have leukemia when I met someone new (or even in normal conversation). This puzzled me. It’s an intense thing to find out about someone, to be sure, but why should I be afraid to bring it up? I’m the guy with cancer, after all.

After thinking about it for a while, I typically hesitated because I did not want to be that type that always seems to have something to complain about. It’s so hard to actually get to know someone like that, and I can imagine the reverse is true, as well.

You know the type. Drama, drama, drama.

This, of course, makes it all the more confusing when someone asks me how I am. “Well, I puked my guts out last night,” can come across as aggressive, at least in its openness and honesty. But then again, is that my problem? They’re the ones that asked…

I have leukemia. It sucks some times, though occasionally I don’t even think about it. But I don’t see the point in not bringing it up when it is on my mind, especially if I think I am trying to protect someone’s feelings or am afraid of their reaction.


It wasn’t supposed to be like this.

A german photographer developed a work of art that focused on death. Specifically, the artist produced photos of people when they knew their health was declining and then after they had died. The work represented a fairly diverse group of people at different ages and gave the observer background information leading up to the person’s death. The photos, one of life and the other of death, looked strikingly similar, and combined with each person’s brief life story, the whole work was quite haunting.

I found myself not particularly enjoying the work, however, and like some profound movie, it stuck with me (and bothered me) for several days. But I could not figure out why. It wasn’t that there were pictures of dead people – Leukemia cured me of any acute fear inherent in death. Nor was it the fact that most of the subjects of the piece died of cancer – I found that kind of amusing because “it’s always cancer.” And no, you aren’t allowed to find that funny unless you have dealt with it – think of it like a club. An exclusive club. Expensive, too – even with insurance.

Anyway, After a few days of mulling it over, I finally came to understand why the exhibit unnerved me to such a degree. The artist sought to celebrate both life and death, especially the latter. I am all for celebrating and cherishing life, but I will never do the same for death.

 

Things were not supposed to be this way. We weren’t meant to die.

 

Regardless of how readers of the Biblical Narrative interpret the beginning of Genesis, the anthropology is universal: our own mortality is a profound corruption. Life was given as a gift, death is the curse of our own doing.

Culture seems to be moving in a way that idolizes death, using descriptions like “a sweet release,” “a turning to peace,” and “rest.” There are even religious cliches that move in the same direction: “going to be with the Lord.”

But we weren’t meant to experience this separation from those close to us; they weren’t meant to die, and neither are we. Death is not a natural part of the human life cycle, but rather it is decidedly un-natural. Treating death as anything else robs our ability to mourn, feel the pain inherent in death and separation, AND experience life to the fullest.

Life is all we have right now, and death is an abrupt end. Seek to live a full life. Don’t fear death, but hate it – because it is a curse.

Begging and Pleading, for a good cause.

I hate asking people for money, even if it means donating to an undeniably good cause.

The fact remains: without the Leukemia and Lymphoma Society, I would have died sometime in early-2006. So as my wife continues to raise money for the organization (while I cheer from the sidelines), I am trying to get as much support as possible. The link below goes directly to the Team in Training donation site, which has raised many millions to find cures and treatments for blood cancers. There are no gimmicks, and all donations from this point on go DIRECTLY to the LLS.

It doesn’t take a few gigantic donations, but rather the generosity of many – giving even a dollar at a time – to defeat one of the deadliest forms of cancer. I owe my life to this organization, and so do the generations of patients after me.

Please Donate, even if it is a few dollars: http://www.active.com/donate/tntgmo/teamkaty

The Last Words of My Mentor – Live, and Live Well

My mentor, Kyle Lake, was killed in an accident on a Sunday morning, two weeks after I was diagnosed with Leukemia. The following is the message he would have given, encouraging us to live life to the fullest.

Live. And Live Well.
BREATHE. Breathe in and Breathe deeply. Be PRESENT. Do not be past. Do not be future. Be now.
On a crystal clear, breezy 70 degree day, roll down the windows and FEEL the wind against your skin. Feel the warmth of the sun.
If you run, then allow those first few breaths on a cool Autumn day to FREEZE your lungs and do not just be alarmed, be ALIVE.
Get knee-deep in a novel and LOSE track of time.
If you bike, pedal HARD… and if you crash then crash well.
Feel the SATISFACTION of a job well done—a paper well-written, a project thoroughly completed, a play well-performed.
If you must wipe the snot from your 3-year old’s nose, don’t be disgusted if the Kleenex didn’t catch it all… because soon he’ll be wiping his own.
If you’ve recently experienced loss, then GRIEVE. And Grieve well.
At the table with friends and family, LAUGH. If you’re eating and laughing at the same time, then might as well laugh until you puke. And if you eat, then SMELL. The aromas are not impediments to your day. Steak on the grill, coffee beans freshly ground, cookies in the oven. And TASTE. Taste every ounce of flavor. Taste every ounce of friendship. Taste every ounce of Life. Because-it-is-most-definitely-a-Gift.

–Kyle Lake, RIP.

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