Thursday, February 20, 2014

Silence Is...

Silence Is...


I've been quiet, largely silent.

There are reasons...more than a few.

Some are big; some small. Some are real; others...contrivances.

Interestingly, none are excuses. There's no need. I'm in an oddly free space. I'm not beholden to anyone.

Except myself...

You have no idea how strange that feels.


There is one reason for my silence that dominates. It's probably not what you think.

True, I've been focused on When I first got home after Cycle 4, walking was a huge effort. Stairs were a Himalayan challenge. Sleep was constant, but it was rarely restful.

I was toxic, poisoned, sick, weak. And that was my body.

I was sick and tired of being sick and tired. That was my spirit.

I was sick and weary. That was my mind. When it worked. It seldom did.

Chemotherapy changed me, and not because I'm fat and bald. It...quieted me.

True, I've mindfully (when it worked) become a consumer...not a producer. I've read (when I could) graphic novels that expanded my imagination. I've watched more movies than is healthy. I've not listened to much music...I can still only handle one brain input at a time...but the television and movie consumption make up for any shortfall in my modern media mastication quota.

I have not written.

I've recovered and consumed. I've been as passive as possible.

I've parented.

I've slept.

But I haven't written.

For one reason...I'm afraid.


I'm on the train to New York to visit my doctors at Memorial Sloan-Kettering Cancer Center. It's a familiar environment. The rumble and clank of the train, the sour stench, the cloying atmosphere can only be Amtrak.

This should have happened last week, but New York was closed. A storm was rolling in, promising apocalyptic visions that included heaps of snow, howling winds, and wayward Russian cargo ships floating down 42nd street. (I told you I watched too many movies...). So, they closed the city. MSK rescheduled, Amtrak rerouted, I stayed home.

Which meant I got to wait. More. More waiting. More limbo. More...fear.

You see, I don't know what's coming.

That's not strictly true...I know surgery is coming. But that's like saying that death is coming (was that in bad taste?). You know it will happen, but you don’t know what form it will take. And you don’t know when.

Surgery is coming. I don’t know what form it will take. I don’t know when it will happen.

And that scares me.

You see, in 2006 I had two surgeries. The first, an orchiectomy, hurt like hell, removed part of my manhood, left me with nerve damage that eliminated my primary erogenous zone, yet had relatively easy recovery.

Sure, leaving the hospital was brutal, car rides were agony, and I was constantly nauseous from the pain and the constant sensation that someone had kicked me in the balls (er… ball). But it was manageable.

How I long for my surgeon to tell me that my next surgery will be something like that. I would weep with joy.


The second of my 2006 surgeries was different. It’s got a fancy name: retroperitoneal lymph node dissection. It’s so fancy, it gets an acronym: RPLND.

During RPLND they slice you open from sternum to pubic bone along the center line of you abdomen, curving around your navel. They open you up, and they take out your entrails (and gods know what else…), so they can get to the lymph nodes that live along the inner wall of your back. They open you, dig a well, and scrape out bits of you. Then, they put Humpty Dumpty back together again.

In my case, I awoke in the recovery room screaming. They had the wrong medication mix in me, and I could feel…everything. I later awoke in a hospital room with a bloated carcass, railroad track staples holding my abdomen together, and pain meds that just kept the pain at bay.

Long story longer…it took me a week to awaken my bowels, weeks to be able to function basically, months before I was ready to face life outside the home, and years before I felt like me.

How I long for my surgeon to tell me that my next surgery will be nothing like that.

But I doubt it.

Here’s the thing. I don’t know how you get there from here without removing my bowels. I’m an amateur anatomist. I’m no surgeon. But I know how challenged they were when they tried to perform a biopsy. Things haven’t changed that much…

Of course, I’ve done the Internet research I could. And I learned very little.

I’ve lost a lot of sleep. I’ve lost my sense of humor.

As today has approached, I’ve gotten quieter and quieter…because I am afraid of what the doctors will tell me.

But that’s not all…

My situation—from day one—has been…interesting. I’m a late-relapse (they think), which is rare. I’m in my mid-forties, which is rarer. And my cancer is not conforming to type. The doctors love me—not merely for my sterling personality and astonishingly good looks—because I am fascinating. They can learn from me.

Whoo hoo.

One of my cancer’s non-conforming behaviors is that my blood markers are negative. In other words, one of the primary methods they use to monitor your cancer’s activity is unavailable to them. It’s like flying an airplane without instruments or piloting a boat without charts or stars. It means that they tap into their collective experience to guide their decisions. About my medical care. About my life.

One of the great lines that was delivered to me straight-faced was: “it walks like a duck and looks like a duck…so we’re going to treat it like it’s a duck…even though it doesn’t quack like a duck.” My cancer is a foul fowl.

So, while the chemotherapy had a positive effect on my tumor (shrinking it by some 30%+), and while my CT scan shows no additional tumors…what do we really know about what’s going on in there?

Not much.

Which is the other thing I fear…what will they find when they get in there?

I know the tumor is there. I have unambiguous pain. It sits in my hip and radiates down my leg. Sometimes it hurts me after I eat…as food moves through my bowels. It’s no fun.

So, what else is going on in there?

I know the tumor is embedded in the psoas muscle, and that it was directly pressing against one of the two branches of the iliac artery. But what does “embedded” really mean? What else is affected? What tissue damage is in there?

Which brings me to my third resounding fear…what will life be like after surgery?

That’s a simple sentence that’s really hiding a bunch of others.
  • What will my recovery look like?
  • What long-term affects do I face?
  • What will my medical life after Cancer 2 look like?
  • What will my survivorship look like?

For those who think I’m wallowing, notice that I assume that I will survive this. I do. I’m not ready to go, and this isn’t going to be what gets me. My time isn’t now. I know this. I don’t know when, and I don’t know how she’s going to come for me, but I do know this isn’t it.

Each of those is an essay. In simple terms, here is what’s in front of me:
  • Recovery could be like orchiectomy, or like RPLND. It could be weeks or months into years.
  • Long-term effects could—on the extreme—include my losing my leg. Lesser affects include nerve damage that diminishes leg function and strength. There also could be damage to my bowels, with myriad complexities. There’s a lot that could go wrong. And we’re not talking lightning-strike odds. Oh, and did I mention the long-term effects of chemotherapy? Some of those are down the road for me…
  • Medical life includes…what? Blood markers are useless. Do I have CT scans every X months? PET scans annually? How much radiation do I need to absorb through my imaging? How do we know that I am cancer-free?
  • Survivorship means different things to different people. How will I live my life in the aftermath? What will I do to be worthy?


Silence, t’was born of fear.

I have a lot to fear…the type of surgery, what they will find, life after…it can be crushing.

I sleep alone. I awake alone. My children are growing. When fear sets in, it meets and is multiplied by loneliness. Together, they can make a hell of heaven, crushing a soul.

I fight it. Sometimes loudly. Sometimes silently.

But I fight it.

Silence is…

Wednesday, February 19, 2014

So, How Are You Doing?

A lot of kind friends have asked me this question recently. Here is a quick update…

I had a CT scan in January. The tumor appears to have reduced in size in two of three dimensions. The other was larger. Since it is soft tissue, it makes sense that it could have changed shape. The good news is that no other tumors were spotted. Other than that, it was a good CT…no news is good news.

I am still recovering from chemo. I have neuropathy in my toes and fingers. Sometimes I get befuddled. I no longer get the seizure-like brain shocks that were so debilitating during the first three weeks post-hospital. Even so, my brain has distinct limits. More than one source of stimulus is almost impossible to handle. I cannot easily read. I absolutely cannot read and listen to music simultaneously.

My sense of taste is coming back. Chocolate still is a bit…odd. Most other foods are fine. Plain water makes my stomach churn—this is psychosomatic from my time in the hospital.

I sleep better now. I feel I have mostly de-toxed, so I am no longer waking in deep pools of sweat. And when I awaken, I know where I am. That’s a good thing.

I have pain. The tumor hurts. Certain movements let me know with absolute assurance that there is something wrong.

I’m weak, but I’m stubborn, so I do too much. Think snowshoveling. Think sledding. Then think sleep and ibuprofen.

I’m weak, and sometimes things go wrong. I’ll be walking along, and my legs will declare that they are quite done with walking, thank you very much, “so we’ll wobble a bit and freak you out”. Yeah, it’s fun. It’s also why I will walk with a cane, even though I seem OK. At any moment, things won’t be ok.

And that’s the gist of it: at any moment things won’t be OK. And it definitely freaks me out.

Emotionally, I’m on a roller coaster and I’m trying to keep the brakes applied as much as possible, while at the same time allowing it to run. It’s a delicate balance, and it’s not for the faint of heart. It’s also not something for a person who does not live alone. If there is a good part of my isolation, it is that I am learning to (cope, manage, function, thrive) on my own.

Spiritually, I’m learning to let go. It’s not easy. I don’t care about a lot of the things I did in former times. Some things that linger shouldn’t. Others should. I’m working through which is which. It gets confusing.

And that’s another gist…there’s a lot of confusion and uncertainty; l am learning to live with it.

Whether I like it or not, it is what I need to do.

I do eat too much—of the wrong things. That’s my primary vice. My other is that I long for a partner.

I’m also dealing with a lot of fear. I’m writing another post about that. Stay tuned.

At the moment I am without much humor. Hope is assumed, not “hopeful”. Positivity does not reign.
There’s a lot of “getting on with getting on” in my world.

The Little Angels are what keep my head. Time with them is precious. I know it.

So, that’s the quick update. Nothing poetic or prosaic. It is what it is…

…for now.