Decision

Constant Reader:

Sometimes Life gets in the way of intentions, and priorities must take...priority.

A brief kid's illness, a brief Daddy illness, work demands, volunteer duties, all the other duties of everyday, and my updates have slackened…

Another truth is that once I made my decision, I needed to tell certain people in person. There are times when a phone call is not enough: you know this. Proximity begets truth; poignancy needs closeness. So, this post had to wait.

And another truth is…that this will be a brief post…I’m saving my powder.

Many of you have suggested that I write a book about my experience. At first I approached the idea the same way teenage boys approach their ambition to be a rock star—with wistfulness, arrogance, passion, and abject fear.

That’s evolved.

It’s no longer an ambition. It’s a need.

On this blog I’ve shared much…far more than you may have expected when you started reading it.

I’ve left out more than I’ve shared.

But that is for another day.

Thank you for reading. More; thank you for caring.

And a very happy Thanksgiving to you and your perfect circles of acquaintances, families, and friends. Drink another; coin a phrase.

-Wheelsucker

Four states.

Four hospitals.

Five doctors—three oncologists and two surgeons.

Multiple needle-pricks.

Uncounted radiation.

Scores of coffees.

Hundreds of minutes on the phone.

Very few hours of sleep.

Deep thought.

Priceless conversations.

I’m not having surgery.

- - -

Every three months I will be scanned and poked and examined. The best doctors with the best equipment will focus their keen attention on me every quarter. I will live within a new lifecycle.

In 2006 I could not do it.

Now I can.

I am choosing quality. Here are my reasons:

• I do not believe that anything can be done to stop my cancer from re-emerging when it “wants to”.
• I do not believe that I am here in 15 years.
• I believe that my children have been through enough. "Cruelty" would be putting them through the agony of another six-month recovery—one with uncertain outcomes.

What? Isn’t it more cruel to risk it coming back? What if they lose their Daddy?

See the first two bullets.

• I believe that it is time.
• To live life without fear.
• To make my time with the LAs precious and present and pure.
• To be the man I can be—and nothing less.
• To make history—and stop letting it make me.

- - -

Since I made my decision, several things have happened.

• I let go.
• I sleep.
  I have slept better than at any time that I can remember—since I was a child.
• I see time differently.
  It is defined by an apex at the present and rays of infinite possibility flowing into the future. There is little periphery. There is less past.
• I care more—and less.
  Important is important. Anything else…not so much.
• I appreciate.

People keep asking me: “how are you doing?”

I respond: “I’m not dead yet.”

It’s true.

Most people can’t handle that response—at first. Then they come around (or they fake it well).

“Live like you’re dying.” It’s a cliché

Okay.

Let’s play.

What will be will be what will be.

I’ve got this.

- - -

Thanks to matt mathai for the wonderful photo, and apologies to his dear lady, who I cropped out of the picture!

Evolution of a Decision (Part 1)

You can have surgery, or you can be monitored.

Surgery means you likely will lose your leg.

Monitoring means you risk another relapse.

- - -

Before going forward, we need to go back…

In March I had a PET scan at Memorial Sloan-Kettering that showed that there was no active hypermetabolism. That can be translated to “no malignancy”. My doctors said “we consider you to be in remission.”

Good news.

They also said that they did not recommend surgery at that time. “There are serious risks involved. Let’s wait a few months and see how things look. We’ll re-evaluate it then. Right now, there is no urgency.”

My celebration meal was a beer and a panini
at the Rapha Club. I was delirious.

That was a polite way of saying: “heal.”

I was over the moon. I celebrated.

But I was hurting.

Each day was a challenge. It was two steps forward, one step back. Except when it was one step forward, two steps back.

I needed to heal. The doctors were right. I was a mess. Major surgery at that time? I don’t even want to think about it.

My next set of scans was to be in July, but May was not kind to me. I was hurting—badly. Daily.

In early June I spoke with my oncologist at Georgetown. She was surprised that my New York doctors were counseling me to not have surgery. In her mind, protocols are protocols.

And the pain I described concerned her. She suggested that we get scans done immediately. In her words: “I like to be over-cautious. Experience tells me that the test you don’t do is the test you needed to do. Get the scan.”

So I did.

And the scan showed…no change from March. My complications were just that—complications. On the balance, that was fine. The cancer had not come back.

We talked more, and I understood that she was very interested in my pursuing surgery. She was being coyly persuasive, and in her Jedi mind-trick manner she convinced me to let her reach out to a colleague in Indiana. She wanted another opinion on my situation. I agreed. It was a non-decision.

Summer arrived. I recovered. I lived. The LAs and I enjoyed the love of great friends in Maine.

And when I got back, I went to New York—disc in hand—to see my oncologist at Memorial Sloan-Kettering.

Approaching the Rabbit Hole

I was feeling better. Some days I felt…good! Others, not so much. I still entered brain-squeeze phases, when I could barely think or see and all I could do was sleep.

But I also had extended periods of lucidity.

And in those times, I considered surgery. I knew the protocol—have surgery. It was a non-decision…wasn’t it? It’s what I was supposed to do, right?

Right?

I sat in his office and went through my list. I described this and that, reported on the other, and came around to the 800 pound gorilla in the room: what about surgery?

As I previously wrote:

You have a mass of residual scar tissue that has adhered to all the surrounding structures, including veins, the iliac artery, and the femoral nerve. We don't want to go in there. We cannot predict the outcome. The chances are very good that you will lose some leg function.

If there are complications with the veins, drainage from the leg could be compromised, and you could end up with "elephant leg". If the artery is compromised—and we already know we are looking at an arterial bypass and graft—it could mean the loss of your leg. If the nerve is damaged—and we already know it is affected, based on your pain—we have no idea what that result would be. It could be loss of sensation, or function, or both.

And any combination of those complications could happen.

While we want the mass out of you, we view this as high-risk surgery.

OK, then.  Message received.

But, I’ve learned something from my cancer experience. You need to press your doctors. Challenge them. You are your own best advocate—and sometimes your only advocate. So step up.

I stepped up.

I talked about the known protocols. I expressed my concerns. I wanted more detail on the risks, and on the surgery, and…

We ended the conversation thusly: I would have another set of scans in September. Once those images were in, I would meet with him (oncology) and my surgeon to discuss my options. It was a perfect decision. I would get more time to heal. They would get more mature (and far higher-quality scans). And we could meet and focus on the surgery question.

Entering the Rabbit Hole

After returning home from New York, I got an email from my Jedi-Georgetown onc:

Indiana says:

"[Wheelsucker] has a small residual mass near the left iliac artery and vein.  It should be resectable but looks necrotic.  A small number of late relapses are cured with chemotherapy alone so if he wants observation I don't think that would be wrong.  If he wants surgery it is doable."

As I wrote in August:

What do I do now?

What would you do?

What do I do now?

- - -

The seeds of cancer are within me. They sit in my scar. My chemotherapy drugs...can cause...cancer.

The soil for cancer is...me. My flesh awaits.

...

(I just had a smack-across-the-face moment. I meant to write "The soil of cancer..." in the second line. I wrote: "The soul of cancer is within me.")

The soul of cancer is within me.

...

What do I do now?

What I Did

As best I could, I set it aside. I failed more often than I succeeded. But I tried to contain it.

I was shattered after Pelotonia Day 1.
Thinking back, I've been shattered through most of 2014.

I rode in Pelotonia, and I suffered awfully. I quit Day 2. (I regret that.)

I got the LAs back to school.

I worked. I lived.

And I was clench-your-teeth-till-you-taste-blood stressed.

Injured, I had to get off the bike. No fat bike joy. No riding at all...not even on a trainer.

I ate too much of the wrong things.

What do I do?

My relapse anniversary came. Went. I noted it, quietly. Heavily.

I drank too much of the wrong things.

The soul of cancer is within me.

September 22 was circled on my calendar. My next scan.

What was I going to do?

What do I do?

What Would You Do?

I have a choice.

It’s not an easy choice. Nor is it straightforward.

It took me months to be strong enough to face it.

It took more months to make it.

I have made my decision.

But I wonder…what would you do?

Your Situation

Your PET scans indicate that you have no hypermetabolism in your body. Based on this, your doctors have used the word “remission”.

Yet, deep within your pelvis you have a residual mass. It measures ~14mm in diameter.

Protocol calls for resection—complete removal of the tumor.

“Complete” means that they cut into the surrounding healthy tissue to the point where they are certain that they have removed all the diseased tissue—just like your dentist drilling out your cavity prior to filling your tooth. They get it all out, to reduce the risk of future relapse.

Your residual mass sits next to a major vein, your femoral nerve, and your iliac artery.

You are in constant, low-grade pain. Every minute of every day you have a dull ache from the interior of your left hip. When you exercise, that pain increases unpredictably. Sometimes it is slightly louder, though still dull.

At other times it’s insistent, brassy.

You know that cancer is within you...every day.

Your Choice

You can have surgery, or you can be monitored.

Surgery means you likely will lose your leg.

Monitoring means you risk another relapse.

What do you do?

- - -

In its simplest terms, that is the choice I have faced these past few months.

There is much more to the story than that, and I will share it with you.

The journey to my decision took months and miles and money. It involved tests and scans, oncologists and surgeons, four hospitals in four states, deep reflection, and the most disciplined decision-making of my life.

I know that my choice defines every day of the remainder of my life.

Yeah. It’s like that.

It’s like Life…but more so.

So...what do you choose?

Risk losing your leg?

Risk cancer’s return?

Think it over.

I did.

On this day...

...one year ago I was punched in the neck and poisoned...for my own good.

They cut me open and inserted a catheter into my jugular. They manipulated the tiny hose until its tip touched just outside my right atrium.

Cutting a flap into my chest, they inserted a Medi-Port, attaching the other end of the catheter.

It's still there.

I'm still here.

On this day one year ago my chemotherapy began.

It started with "pre-medications"--drugs assigned to help me survive the side effects of the "real" drugs to follow.

It continued with Taxol--a drug so toxic that they will not administer it via an IV. It is corrosive to most tissues. During a later cycle a suspected leak necessitated that my nurses wear double-layers of gloves, masks, and haz-mat gowns.

And that was the easy one.

And so it continued.

And I'm still here.

- - -

The past year has been extraordinary.

I experienced the best in people; the worst shattered me.

Love buoyed me up, even as poisons debased me.

Rendered inhuman, I wanted to die...even as I fought to live.

I fought. Every. Step. Of. The. Way.

I went places I never wanted to go. I don't want to return to them, but I'm still here. So, I must. In my own way; in my own time...to honor and respect and acknowledge.

And live.

I'm still here.

- - -

The past two months have been extraordinary.

2014 runs the same course as did 2013. Months of questions and answers and more questions and fewer answers...

Tests and scans and consults and doctors and hospitals and mile after mile and day after day listening and talking and seeking hearing searching--without and within--brought me to a cusp.

I needed to make a decision--one that defines the remainder of my days.

And made that decision.

- - -

One year ago today I started something I knew could kill me—expecting, hoping, it would save me.

And it did...

...so far.

It brought me to my lowest. But, I'm still here.

And you know what I am about to write...

I've got this.