Lonely

Constant Reader, this is an uncomfortable post.

Don't do it.
—I have to.
You're a fool.

I'm Divorced.
I'm lonely.
There's no shame in it; but its not OK.

Fourteen years of marriage—gone. What lingers, lingers—and that's entirely about the children. Inside me there's respect, and appreciation, and a love for which there is no name. But the marriage is over. That dream is a memory. What remains...is not what this is about...

I'm lonely.
Such understatement.
My bed is cold. My house—silent. My calendar—open. My heart...

I Have Cancer.
I'm alone.
I go inside to cope. I'm vulnerable, I'm frightened. I'm...

I'm lonely.
There's no shame in it; but its not OK.

This is not funny. Where's the funny?
—It's not meant to be funny.
So, why the drama?
—Understanding? Confession? Awareness? Compulsion? I don't know the word, or if there is a word....I'm being honest, and open, and...
You're being a whiny little bitch.
—Stop it. I'm not Morrissey. I'm not a Smiths lyric writ large. I'm not whining; I'm stating.
Difference without distinction...you're whining.
—I don't want pity.
Liar.
—No. I don't. Not pity. Something else...
What?
—I don't know
Pffft. You're a whiner. Worse, you're boring.

Back to Back They Faced Each Other

Honest Reader, your alarm sounds. You wake, naked. It's a new day. You pull off warm covers. You're exposed, cold. Your assumptions, beliefs, expectations, needs, responsibilities...awaken. They're with you—part of you—influencing, defining, inspiring. You dress yourself in your reality, wearing it, as it wears on you. Welcome to the day.

My alarm sounds. I wake, naked. It's a new day. Under the covers I'm face-to-face with deadly disease. I have cancer. I roll over, seeking shelter, and I find a cure—a cure that will sicken me, weaken me. A cure for cancer that may give me cancer, weaken my heart, ruin my kidneys. May. Might. They don't know. We. Don't. Know. My assumptions, beliefs, expectations, needs, responsibilities...awaken, confused. Yesterday they were different. Tomorrow? who knows. I have now—only now. I cloak myself in now. Welcome to the day.

THAT is my reality.

It's a cloak that gives no comfort.

I Need.

I need love. I need comfort. I need...affection. I don't need hope, answers, solutions. I need warmth, whispers, caresses.

"Please, please, please let me, let nme, get what I want"...crikey, you are Morrissey! —Fuck off.
Whinge, whine, sob. Stop. Now. You're oversharing. It's awkward and uncomfortable... —So?
So?
—So? Why should I care? I'm not writing this for you. It's for me. I need this. I need this told. I may look a fool, but I won't live with regret. Not anymore. Life...life's too short.
No one cares.
—Look, do us both a favor, and don't read it if you don't want to. It's my blog, my choice, and my price...not yours.
You're weak.
—My point, exactly.

I'm Not OK

How do you face fear, and death, and do it alone?

How do you not do it alone?

We're born alone. We die alone. And in between, are we ever not alone?

Do we ever know anyone—even ourselves?

I don't know. I thought I did, but my assumptions, beliefs, expectations, needs, responsibilities...have been shattered.

Marriage asked me those questions, time and again. My divorce shouted them at me.

Now, cancer opposes me, toe-to-toe, screaming in my face, spraying spit, demanding I answer: are we ever not alone?

I don't know. I just don't know.

So much change; so little time. The gyre widened, foundation crumbled, center failed to hold. Truths become false. Things. Fell. Apart.

And inside, a disease grew. A cancer formed.

And I am alone.

Was it ever thus?

I know so little. Yet, I do know this: I'm lonely, and I need love; I'm frightened, and I need comfort; I'm vulnerable, and I'm scared, and I need safety.

But I'm Conflicted

I'm Divorced.
I'm lonely.
That's fixable.

I Have Cancer.
I'm lonely.
Ohhh...

Cancer's a harsh, jealous mistress. She demands sacrifice. She makes you selfish. To survive, you must nurture you. There's not a lot left for anyone else.

I'm Dad. My Little Angels need me, and I need them. So they get a part of me.

After cancer, after fatherhood, what's left?

I need a someone in the worst possible way; I'm vulnerable in the worst possible way; and I have so very little to give. How do you bring someone into this? How is it not...desperate? How do you embrace love?

A relationship is give and take. Cancer forces you to take...and take more.

And that's not fair.

I want to give. I want to love... But I'm held back.

Something stronger than my need stops me.

Is it fear? Is it guilt?

Yes. And yes.

I fear rejection. I fear the guilt that comes from dependence. I fear the guilt of not being strong—of not "handling it."

Precious vulnerability, naked heart—that's what stops me.

Everything is new, it's all too much...I cry, like a baby.

That's not bad.
—Fuck off.

I believe in me. I have faith—except when I don't.

I can handle this.

But it's not OK.

I'm not OK.

I'm alone.

You're still a tosser.
—Guilty. But that's a conversation for another day...

Empty

Empty Two words, so innocuous...

Two words, so explosive...

"Bowel Preparation"

Three pages of instructions.

Three. Pages.

Items to purchase:

• Miralax in large bottle (8.3 ounces or 238 grams)
• 4 Ducolax or bisacodyl tablets (5 milligram tablets)
• Large, 64-ounce bottle of sports drink, such as Gatorade (Are there small, 64-ounce bottles?)

A small list. But they forgot the most important thing you need. Think about it...

One week before your test (Oops, might should have read this earlier.):

• Do not take aspirin products or iron tablets (check)
• Do not take fiber supplements like Metamucil, Circel, or Fiberall (I'm regular as clockwork, thanks for asking, so no need for such shenanigans!)
• Do not eat popcorn or any corn (Dodged a bullet there, my annual piece of corn on the cob was in July. Seriously. Once a year—it's about all I can stand. Now, there's nothing here about corn chips, thank the gods. Me likey me some corn chippies...)

So, don't do anything that makes you bleed, poop, or poop small, yellow bits that remind you that you didn't chew really, really well.

On the Day Before Your Test

Drink only clear liquids. Avoid all red or purple colored liquids. Do not eat any solid food or milk products until your test is done.

This is no big deal. The list of options is straightforward. The only problem is the whole red/purple thing. Gatorade and likesuch products are icky. The only flavor I like is grape. Grape is purple. Fek.

Clear liquids:

• Water
• Strained fruit juices (no pulp)
• Popsicles
• Ice
• Soft drinks
• Gatorade
• Clear broth or bouillon
• Jello
• Kool Aid (oh yeahhhh)
• Coffee or tea (no milk or cream)

It's a manageable list. I was glad to see that "ice" is on the same list as "water" and "popsicles". (Am I being too snarky?) The one surprise is coffee. So, red or purple is out, brown is in. And it's a poop-stimulant, too! So, if I start the day with a nice, big cuppa...

My Day

I had a bunch of things to do the morning of my preparation. A lot of paperwork, phone calls, work work, stuff.

I savored a large Dunkin' Donuts half-caf, half-decaf black. I drank white grape juice. I consumed water. I was hydrated. I peed lots.

And I had sympathetic poops, or nervous poops, or preparatory poops, or whatever-it-is-you-call-the-poops-that-poop-when-you're-nervous-and-about-to-perform-on-stage-or-in-competition-poops-that-don't-really-satisfy-but-empty-you-enough-to-do-that-voodoo-that-you-are-preparing-to-do.

And it was OK.

But I don't live in a vacuum, lonely though I am. 

There was a problem with the littlest angel. In short, she banged her tailbone on Sunday, and she was in a lot of discomfort. She had had a great Sunday night's sleep, but she was stiff in the morning, and she was having some trouble sitting.

I had given her ibuprofen and something soft to sit upon, but (and you parents out there already know where this is going...) after stopping by the school to give her more medicine, I saw the dark circles under her eyes, heard the voice, and decided she was coming home with me.

Thus, I was doing daddy duty at the start of doing doody duty.

Sigh...

Before tucking the angel in for a nap, I swallowed the "4 Ducolax or bisacodyl tablets (5 milligram tablets)". Just prior to doing so, I read the box (I know, crazy...). "Adults take one to three tablets as needed for relief of constipation." One to three. I just took four. This oughta be interesting...

Angel tucked, I waited an hour, listening in on meetings (I love it when they don't know I'm there!) and began step two:

Mix the Miralax in a 64-ounce bottle of Gatorade or other clear liquid of choice. Cap the bottle and shake the bottle to dissolve the powder. Most people prefer to drink the liquid chilled so you may want to place it in the refrigerator.

I'm glad that it told me to cap the bottle...

Oh, hey now, what's...oh, boy, here we go...

It seems that shaking bottles is, er, stimulating...

I spoke with the littlest angel's mother, and we worked out a plan for taking the sweetie to the doctor. She was resting well, but we knew from experience that tailbones are notorious for pain and discomfort. We knew she wouldn't want to do any physical education at school, but we needed a doctor's note to support that. So, somehow, some way, I needed to try to control myself just enough to drive her to the doctor.

But I could not stop the process...on to step three:

Start to drink the Miralax. Drink one glass every 10 to 15 minutes. Drink it quickly rather than sipping small amounts because it does not taste that good. Finish drinking the liquid in 2 hours. Be sure to drink all of the liquid.

The author of the instructions really does not like commas...

Because you asked, Orange was the flavor I chose. (Actually it had some stupid marketing name like "Citrus Blast", but it was orange colored and tasted vaguely like oranges. And who gets paid to come up with those asinine names? I'm just happy we have moved beyond "extreme" everything. I'm not sure my bowels could have handled an "Extreme Citrus Blast".)

I drank. I drank some more. I clickityclacked. I drank some more.

Time passed. My alarm rang. Time to take her to the doctor. I stood. My stomach lurched. Actually, it "gglurched", which is an odd mashup of "gurgle" and "lurch", and then it settled. Sort of. I had the very real sensation that I had a ticking time bomb in my stomach.

We loaded up into the car and headed to the doctor. Gglurch.

We got to the doctor and checked in. Gglurch. Gglurch.

I spied the bathroom. But it was all in my stomach. It didn't feel like it had moved down yet, so I was hopeful. Gglurch.

Smiles, kisses with eldest little angel. Talk with their mother. Hug the LAs. Gglurch.

Goodnights. Gglurch. Gglurch.

Drive home. Gglurch. Gglurch. Gglurch.

Walk in. No gglurch.

Huh?

I drank the remaining mix. I cleaned up the house. I was heading up the stairs...

Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. RRRRUUUUUSSSShhhhhhhhh.

It left my stomach. Flush. Flush.

Window open? check


Big-ass fan on? check

Toilet paper? Erp?

Toilet paper? Fek.  

A small list. But they forgot the most important thing you need. Think about it...

It seems that I finished the roll during my nervous-poop, and I was so brain-dead that I failed to replace it.

So, here I was, mudflow man, lacking the SINGLE MOST IMPORTANT THING I NEEDED!

The wave passed. Actually, several waves passed of varying duration and intensity.

I engaged in "creative problem solving".

Dressed, I got my keys and wallet, puckered my pooper, and drove to the store.

Have you ever noticed That Guy walking through the store who looks...uncomfortable? He might be a little bent or shuffling. Maybe he sweat-glistens, a grimace on his face. If you listen, you might hear some grunt, or hum, or some other prehistoric sound—something that long pre-dates language, primal.

That guy was me.

I don't actually remember much. All higher functions were suppressed to serve my intense, waterproof focus.

I shopped. I paid. I drove. I got home.

Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. Gglurch. RRRRUUUUUSSSShhhhhhhhh.

Flush. Flush.

Jeeezus, I think my soul just passed through me...

And so it continued.

I got cold. Really cold. T-shirt, sweatshirt, fleece vest, fleece jacket cold.

I got hungry...strangely. I poured a container of chicken stock into a pot and heated it, while I packed for the journey north. I drank the hot stock. It tasted marvelous. I felt it flow down my throat, warming me. I felt it in my stomach, warm, comforting. I was happy. I felt it move...south. Warm, but a little alarming. And it moved down and over and up and over and down and over and... RRRRUUUUUSSSShhhhhhhhh.

Made it. And I had plenty of toilet paper.


It's alarming, knowing you're pooping but hearing sounds like you're peeing.

I was peeing out my arse.

Lovely.

In-between sessions, I drank grape juice or water. At some point I sensed a rhythm, a correlation... Every time I drank, I pooped. It was like drinking beer. When you "rent" beer, you know you will pee—it is what it is. When you drink water, you don't expect to pee from your arse. And that's what bowel prep does: it makes you pee out your arse.

I finished packing and got into bed, clothes on. I was still cold to the core, and I didn't trust myself to not crap myself.

My instructions told me to not drink anything after midnight, so I wanted to make sure I was sufficiently hydrated after my hours-long purge. I continued to drink water, but it sent me to the throne every time.

I slept. I woke with a start, rushing to the throne room. Is this the way it was going to go all night?

Yes.

I slept. I rushed.

I slept. I rushed.

I slept. And the alarm blared all-too soon. 0400. Time to... RRRRUUUUUSSSShhhhhhhhh.

Made it.

And I still had plenty of toilet paper.

And it was done. I showered, dressed, and headed for the train.

And that, Honest Reader, is where I am now, clickityclacking away.

On my way for another biopsy. Hopeful. Nervous. Empty.  

What will be will be what will be.
I got this.

Bezoars, Complexity, Secrets, and Needles

Constant Reader, within you may join me on a journey of discovery, as I learn a little more about complexity, and discover things that I did not know (because no one told me)...


For the first time since I-don't-know-when, I did not need to wait for my appointment. Less than three minutes after checking in, I was whisked off to an examination room.

Dr. Erinjeri walked in. I did a double-take as I processed this sharply-suited young man. The last time I saw him he was wearing scrubs and a hair net. Yes, he is the doctor who performed my first biopsy.

"Your hair looks longer than I remember it," he said.

"That's because I water it every day."

And we were off...

He pulled up my CT scan onto the monitor and scrolled through it, narrating along the way.

Looking at the images, he pointed out the tumor, the bowels, and the common iliac artery. I had seen the images before, but I did not have the benefit of a clear explanation of features and positions. My previous interpretation was mostly educated guesswork. This was the real deal.

This is a slice of my CT scan (with oral and IV contrast) from August 26. The view is from the bottom, looking up. Imagine I am on my back, and you are naughty and decide to look up my skirt. The tumor is center-right in the image (corresponding to the the left side of my pelvis).

Intestines are directly above and around the tumor. The darker grey is my small intestine. The whitish grey is part of my large intestine.

The tumor is the circle in the center-right. The dark portion in the center is necrotic tissue. The lighter color surrounding it is malignant tissue. It is now roughly the size of a medium egg.

The common iliac artery is immediately adjacent to the tumor. Viewing this image it is easy to understand why the surgical margins are so poor.

I have no idea what the dark spot is. It looks like poop, don't it? OK, I'm lying. They are veins. The one I labeled "Poop" is the vein through which they took my first biopsy.

We looked at the image, scrolling up and down my virtual pelvis. In homage to black-and-white film noir, my hands sweated as I learned more—to the point where I smeared the ink in my notebook. It was that intense for me as we spoke in detail about my first biopsy.

Dr. Erinjeri performed my initial biopsy with a very fine needle, piercing the vein (labeled "Poop") to access the tumor. As previously noted, this was a marginally successful procedure. It was successful in that it captured sample tissues. It was a failure in that the samples were inadequate to our needs.

Secret #1

Over the course of the conversation, I learned that it very nearly was a complete failure. I was sedated throughout the procedure. I remember the nurse pushing the plunger to sedate me, and I remember being wheeled out of the room. I remember nothing in-between.

Apparently, however, I was talking to the team throughout the experience. I can be loquacious, It seems that I was on-form.

Non-stop chatter, or so he tells me. Unfortunately, I don't remember any of it, I certainly do not remember that there were three attempts at the biopsy—each with increasing levels of risk. It was on the third—and final—attempt that they were able to get anything from the tumor.

This explains the discomfort I experienced afterward (and now, as I write this, two weeks later). There was far more manipulation of my tissues than I knew previously.

Here's a closer look at the tumor and the artery. I cropped and enhanced the image with a histogram equalize filter, to give it more contrast. Note that the tumor (center of image) is approximately 4.5 centimeters in diameter. It is approximately five times the diameter of the artery. To my imagination, it looks like Harry Potter's bezoar. Alternatively, think "hard boiled egg".

Our conversation turned to my next biopsy, for which the only recommended procedure is hydrodissection. It is a rarely-performed procedure. Of the 3,000+ needle biopsies performed at MSK each year, maybe five are hydrodissections. However, of those five or so, Dr. Erinjeri does four.

Hydrodissection

In this procedure, two needles are used, one is inserted between folds in my bowels (maintaining the integrity of my intestines). This needle is used to "inflate" the area with contrast saline liquid or a gas (carbon dioxide or nitrogen). The idea is to use hydraulic or gas pressure to push the bowels apart, enabling the second needle to have a straight, clean path to the tumor (see annotated image). Basically, it's fracking my bowels (as opposed to frikking my balls, which is a cheap joke used to provide a moment of levity).

The blue line represents Needle 1, which will be inserted into the belly. It will then be used to pump fluid or gas into the area to separate the tissue masses. The red dashed line represents Needle 2, which is the needle used to sample the tumor. The position in this image is approximate. The intention is for the hydraulic pressure to push the masses apart, enabling straight-line access to the tumor.

If the "inflation" technique works, he will take a 2+ centimeter core sample of the tumor. This sample would include material from the tumor's dead center, the malignancy, and surrounding healthy tissue. Doing so gives the analysts a complete perspective on the tumor, allowing for definitive testing to be performed on the tissues.

And that's what we want.

However, as I mentioned in a previous post, it may not work. Lacking a virgin bowel (I feel dirty writing that...) it is possible that adhesions have formed from my previous surgery. If this is the case, then the "inflation" will not work. Adhesions are not bad—they are merely scarring from previous surgeries—unless you are trying to balloon my bowels.

This procedure is done on an outpatient basis. This means two very big things:

1. I will know—as they wheel me out of the ER—if it worked.
2. I can get back to the business of life the following day.

Secret #2

At this point that I learned another untold secret.

I asked if Hydrodissection would be an inpatient or outpatient procedure, fully expecting that it would be an inpatient procedure. My reasoning was that the last biopsy had kept me in the hospital for two days.

So, I was dumbfounded when he replied, "Outpatient."

I asked him how that was possible, considering my previous hospital stay. He looked at me in that curious, tilt-headed way a scientist looks at an unwanted specimen. Then, a moment of recognition, and he told me something that almost knocked me out of my chair.

"I remember now...they kept you in because they thought you might have had something different, and they wanted you here in case they needed to start you on immediate chemotherapy."

(gulp)

I elected not to pursue that conversation. My brain was getting full. It was another reminder that I was being well-managed by my medical team.

Confidence

"I'm very confident that this will work. Now, I'm a confident guy, but I don't see anything in the scans that indicates that this wouldn't work for you. Of course, we won't know until we try."

You see, my interventional oncologist is known as "the crazy-biopsy guy." (Honest Reader, please note the use and position of the hyphen.) He's the guy who does the tricky, difficult, or complex procedures. He as a healthy ego, and (yes) he is a little crazy. He's also terrifyingly young, energetic, and sharp. And ladies, he's unmarried...jump that train!

But I digress..

He's a creative a problem-solver. To that end, he referenced Neils Bohr's famous quote:

We are all agreed that your theory is crazy. The question which divides us is whether it is crazy enough to have a chance of being correct. My own feeling is that it is not crazy enough.

Hydrodissection is crazy. Is it crazy enough?

So, What If It Doesn't Work?

There is one more option.

As a last resort, I would get to play the role of "guinea pig" in the ongoing farce that has become my life.

It's inelegant. One might say it is brute force...

The "crazy enough" solution? Drill through the hip.

Dr. Erinjeri: "It's never been done, but we have high confidence that it would work, and we've been waiting for the right situation to come along for us to do it."

Frightened and flattered, I listened.

"We already routinely go through the flesh of the hip to drill the hip bone to take bone marrow samples. We've been doing this for years. And we already use needles to biopsy the muscle inside the hip. This would be connecting the two. We would drill the hip and then insert the needle through the tubule we put in the bone. It doesn't effect the integrity of the hip at all. it's just a matter of doing it."

And listening, nodding, grokking, I realized that it is just crazy enough to work.

As I continue to become a smaller slice of pie, it seems more and more likely that this will happen—it's gotta, right?¹ This is crazy!

But we will not cross that bridge until we absolutely must.

Next Steps

Monday, September 23 will become moanday. I will be on a liquid diet, and I will be cleansing my bowels. The purpose is to help shrink the area and prepare it for manipulation.

Tuesday, September 24 will be the day of my procedure. I do not know the time yet. As of now I plan to head up to New York frightfully early and return the same evening. It may be insane...we shall see.

And the following Tuesday, October 1, I return to New York to learn my fate.


What will be will be what will be.
I've got this.

---

¹For the record, we talked about other options. They do have a number of techniques that they are developing (using animals, not cadavers...yes, I asked), but that are not quite ready to be used on cancer patients. One involves micro cameras, using them in a way similar to a laparoscopic procedure. In this procedure they use what they see in the laparoscopic scope to guide them (as opposed to CT scans). As I understand it, this presents some challenges.

A Riddle Wrapped in a Mystery, Inside an Enigma

I have them puzzled.

Imagine a pumpkin pie. Cut a slice. Serve it. Now cut the little "diet" slice. Serve that. Now slice a sliver of that pie—that wafer-thin morsel that just satisfies...

I'm that wafer-thin morsel. But then, deep inside, you already knew that. (The question of satisfaction remains to be answered; that's a story for a different day.)

There is some GREAT news today. My PET scan indicated that the tumor remains self-contained. There is no additional invasion. The malignancy remains intact.

Cancer veterans know how huge is this news. It means that I am not a ticking time bomb. It reduces complexity.

Combine this with the biopsy result that ruled out lymphoma, and there is genuinely (as opposed to hopeful) good news about my case.

Alas, Mine Is a Complicated Case

It's a "difficult situation". It's "rare". It's "challenging". My case requires "hard decisions".

Those are the words of my medical team. I'm not making them up.

The challenge is twofold. The tumor's location makes it difficult to access for tissue samples (you already knew this). As a result, we are working with inconclusive data.

Access. Data. My challenges.

We know that:

• I have a tumor
• It's center is dead (necrotic tissue)
• The rim is malignant

The PET scan indicates that the tumor rim is an active malignancy. It cannot, however, describe the type of tumor. Seminomas test positive. But so, too, do nonseminomas. As do teratomas (more on that later). Remember, the type of cancer cell is what dictates treatment.

Smears, using tissue samples acquired from biopsy, are how they designate type. Unfortunately, my biopsy smears are inconclusive.

And that's the rub.

In simple terms: they do not feel that they have identified the type of cancer with enough confidence to move forward with chemotherapy.

While the entire urology and oncology team believes that it is a late-onset recurrance of a germ cell tumor, they want a greater degree of certainty before treatment.

The problem is my biopsy. My biopsy was not easy. They were not able to get much of a tissue sample, and much of what they got was necrotic.

While there were smears, three out of four tested negative. Only one tested positive for germ cell cancer. The negatives, however, were not the result of the tissues testing negative, rather they were negative because the tissue was dead. So, in effect, they were non-tests.

Why Is This Important?

As Dr. Bajorin said: "We're hanging our hat on a few cells that did stain, and we have a lot riding on it. I would feel more confident with a larger sample."

A lot is riding on it.

The TIP chemotherapy protocol is a big deal. While the doctors are confident that I will tolerate the treatment, the ongoing toxicity and long-term impact of the medications are noteworthy. Yes, the chemo should kill the cancer. But in the meantime, it will be impacting my systems for many years to come.

I'm not 25 anymore. My age is a factor. Despite my fitness levels, the fact is that age is a variable when it comes to the long-term effects. Future malignancies—attributable to the treatment—are possible. Cardiac and kidney issues are possible...

My cancer treatment could give me cancer in the future. Nice.

TIP will put me through the grinder. My scars will linger. So, we'd better make sure that it is the right treatment for the right cancer.

We need to do more testing. We need to get greater confidence and security that it is a germ cell cancer, and we need to run tests to exclude other possibilities.

We will tailor my treatment to my cancer.

We need to get more samples.

Biopsy Options

There are three options in front of me.

Option 1: Needle Biopsy through the bowels
Ruled out. This option presents cross-infection risks that would greatly complicate chemotherapy (bowel matter into the pelvic bowl). Additionally, it carries the risk of contaminating my bowels with malignant cells.

Option 2: Perirectal Biopsy
Ruled out. Going up my arse presents the same complications as the needle biopsy through my bowels.

Option 3: Hydro dissection
Recommended. This falls to the interventional radiology team to perform. During this procedure they inject me with a volume of fluid dye, between the pelvic wall and the bowel. What should happen is that the fluid forces a separation of the bowel from the wall, providing the radiologist with a straight line to insert the needle and sample the tumor.

I remain complicated, however.

The problem is that I do not have a "virgin belly". Because I have had previous abdominal surgery, there is a chance that I have lesions—scar tissue—that bind my bowels to the sidewall, preventing the tissues from separating. In everyday life this is not a concern. For this procedure, however, it is a concern.

But we won't know if this is the case until we try.

Biopsy Outcomes

While the biopsy represents an additional step, the tumor is contained. I am not at immediate risk, so I have the time to complete the due diligence and learn as much as possible about my cancer.

The biopsy can have one of several outcomes:

• It doesn't work. There may be lesions that prevent the tissues from separating, blocking the needle from a clear path to the tumor.
• We get no better data. We may get samples, but the tests may have the same or similar results as the first biopsy.
• We get more data. This is the plan/hope/desire. We want viable cell samples to administer the tests.

What Else Could It Be?

There's a frightening word that floats about in my conversations with the doctors. It's like He-Who-Must-Not-Be-Named; no-one likes to say "Voldemort."

That word is "teratoma".

Specifically, TMT (teratoma with malignant transformation).

This is a very rare form of teratoma that may contain elements of somatic (non germ cell) malignant tumors such as leukemia, carcinoma or sarcoma. In medical terms, they can become morphologically malignant and develop aggressive growth.

It transforms. It becomes a different kind of cancer. In my case, it could have been a germ cell tumor at its onset, and it may now...be something else.

Treatment for a teratoma is surgery. They need to get it out of you.

There is a remote possibility that my cancer is a teratoma.

Remote possibility.

A thin slice of pie.

That's why they want more samples...


The bottom line is that they want a greater degree of certainty that I have a germ cell tumor. They want to make sure that my treatment is tailored, and that we know the risks.

They want me to know my risks.

I have an uncommon presentation of an uncommon disease. I am an outlier. I present the team with a challenge. Ultimately, they will make a clinical call based on all the available data.

And we need more data.


I'm off to the radiologist tomorrow for a consult. The adventure continues...

What will be will be what will be.
I've got this.

'Twas the Night Before Prognosis...

Constant Reader, again, this is a post with little art. It is late on the evening before I travel to New York for my prognosis appointment. In this post I am:

1. Capturing my current status—including what I know, what I don't know, and my decisions thus far
2. Detailing my protocol
3. Enumerating my questions.

It may not be art, but it's mind-bending. At least for me.

Believe me, I have much to say that is not merely factoid. Those posts are coming...

Current Status

Here's what I know so far...

• Late-relapse germ cell tumors are chemotherapy resistant.
• The standard chemotherapy protocol for germ cell tumors is not likely to be effective, which is why my oncologists recommend that I undergo the TIP protocol (detailed below).
• TIP is an aggressive form of chemotherapy. (The drugs administered in this chemotherapy have serious, common side effects and several risky side effects. Vigilance is required throughout my treatment.
• Chemotherapy will be followed by surgery.
• If the chemotherapy was successful the surgery is to remove any portions of the dead tumor(s) that remain.
• If the chemotherapy was not successful, the surgery I will undergo is referred to as "desperation surgery".
  That's a real medical term.
  Fek.

Here's What I Do Not Know

• What is my staging?
• What is my prognosis (survival percentages)?

Decisions Made So Far
From my previous post:

• To Tip or Not To Tip
  I am electing to undergo the TIP protocol
• Where Shall I Get Treatment
  I choose to have treatment regionally, in proximity to my home in Maryland (as opposed to having it at MSK in NY).

To Tip or Not To Tip?

I've chosen to go with the TIP protocol, based on my research and the counsel of a number of people in whom I have a great deal of trust.

The research shows that my cancer is chemotherapy resistant. It is better for me to hit is full force while I am at my healthiest, rather than risking two rounds of chemotherapy (BEP then TIP), when I will be weakened by the first round. Surgery is part of the process regardless, so that is a non-factor.

The counsel has been unanimous. My treatment is being led by the world's leading experts in this type of cancer. No one is as familiar with the treatment options as this team. I should trust them. They have developed the protocols. They have conducted the research. They know what variables effected the research outcomes, and they know where I fit within the context of patient profiles. If their recommendation is TIP, I should go with TIP.

I have a single point of contact, but I am being monitored by a team of oncologists. No one else has the background to offer a better second opinion. These are the guys. This is my team.

Lets roll.


Where Shall I Get Treatment?

I've chosen to go locally for three reasons:

• The LAs
• My job
• Interim care

I can't spend 12 weeks in New York. I don't have the means. And even if I did, I cannot abide the idea of being away from my girls for the duration. As it is, I know my time with them will be severely curtailed.

If I am to see them at all during this period, I need to be in Maryland. In this sense, it is a non-decision.

I also remain mindful of my job. I have been blessed to be employed at the American Chemical Society for both of my cancer odysseys. The organization—and my management in particular—has supported me professionally and personally. I do not underestimate the importance or value of this. I deeply appreciate it. The very least I can do is to remain responsible as an employee, and do what I can, when I can

Further, I need the work. I need structure, goals, and achievement. I need to be able to measure my progress in some way other than chemotherapy. My job matters, and I need to be able to do it.

Finally, chemotherapy is risky. A lot can go wrong. What is for you a simple case of the sniffles represents a serios threat to my health. In its simplest terms, if I get a fever, I go straight to the hospital. An infection can kill me. Period. Full stop.

Let that sink in for a moment.

Traveling back-and-forth to New York would be logistically challenging—can you imagine a 3.5-hour post-chemotherapy train ride? My return trip after my PET scan was challenging enough. Making that trip after a week of chemo is unfathomable.

And I am getting chemo through the cold and flu season. The chances of exposure are going to be high—just look around you now, stores are already promoting flu shots.

I need to be near the team that will be administering my chemotherapy. I need to have close contact with them for any of the myriad eventualities that may happen. Short of living in New York for the next three months, the best option to ensure that I have close care is for me to get treatment locally.

TIP Protocol

I have a copy of the protocol used during the TIP clinical trials. Some high-level notes:

• I will undergo four cycles of chemotherapy, each cycle lasts 21 days.
• I will degrade as I proceed. Each cycle will take more out of me; my condition will deteriorate.
• Side effects are unpredictable. Everyone reacts to the medications differently. Being fit and healthy does not guarantee a smooth chemotherapy experience.
• Vigilance is the order of the day. The risks are real, and they are mortal.

Medications

Dexamethasone
This steroid is used to reduce the chances of allergic reactions to paclitaxel.

Paclitaxel
Paclitaxel is a mitotic inhibitor derived from the bark of the Pacific yew tree. Paclitaxel stabilizes microtubules and as a result, interferes with the normal breakdown of microtubules during cell division.

Common side effects include nausea and vomiting, loss of appetite, change in taste, thinned or brittle hair, pain in the joints of the arms or legs (lasting two to three days), changes in the color of the nails, and tingling in the hands or toes.

Ifosfamide
Ifosfamide belongs to the group of medicines called alkylating agents. Ifosfamide interferes with the growth of cancer cells, which are eventually destroyed.

The growth of normal body cells may also be affected by ifosfamide. As a result, ifosfamide is often used in conjunction with mesna to avoid internal bleeding in the patient.

Common side effects include: nausea, vomiting, loss of appetite, diarrhea, sores in the mouth and throat, hair loss, general feeling of pain and tiredness.

Serious side effects may include: swelling, redness, and pain in the place where the medication was injected; rash; itching; difficulty breathing or swallowing; shortness of breath; wheezing; irregular heartbeat; chest pain; hoarseness; yellowing of the skin or eyes. Onset of any of these symtoms requires immediate contact with my doctors.

The "Important Warning" section is a little intimidating:

Ifosfamide can cause a severe decrease in the number of blood cells in your bone marrow. This may cause certain symptoms and may increase the risk that you will develop a serious or life-threatening infection or bleeding. If you experience any of the following symptoms, call your doctor immediately: fever, chills, sore throat, ongoing cough and congestion, or other signs of infection; unusual bleeding or bruising; bloody or black, tarry stools; bloody vomit; or vomiting blood or brown material that resembles coffee grounds.

Mesna
Mesna is used to moderate the effects of ifosfamide—specifically the effects on the urinary tract and bladder.

In biomedical terms, it is used therapeutically to reduce the incidence of haemorrhagic cystitis and haematuria when a patient receives ifosfamide or cyclophosphamide for cancer chemotherapy. These two anticancer agents, in vivo, may be converted to urotoxic metabolites, such as acrolein. Mesna assists to detoxify these metabolites by reaction of its sulfhydryl group with the vinyl group. It also increases urinary excretion of cysteine.

Cisplatin

Cisplatin is a platinum-containing anti-cancer drug. It reacts in vivo, binding to and causing crosslinking of DNA, which ultimately triggers apoptosis (programmed cell death).

Common side effects include: kidney damage, nerve damage (particularly to the eyes and ears), nausea and vomiting, electrolyte disturbance, bone-marrow suppression, anemia

Pegylated filgrastim (Neulasta)

Neulasta is the brand name for this white blood cell stimulant. It stimulates the bone marrow to produce more neutrophils to fight infection.

Protocol

• Day 1 Eve:
  - Dexamethasone 20 mg by mouth.
• Day 1
  - Routine blood tests
  - Physical examination and vital signs
  - Assessment of chemotherapy toleration
  - Dexamethasone 20 mg (morning)
  - Paclitaxel, ifosfamide, cisplatin (6-7 hours)
  - Dexamethasone 20 mg (evening)
• Day 2
  - Dexamethasone 20 mg (morning)
  - Paclitaxel, ifosfamide, cisplatin (6-7 hours)
• Day 3
  - Ifosfamide, cisplatin (5 hours)
• Day 4
  - Ifosfamide, cisplatin (5 hours)
• Day 5
  - Ifosfamide, cisplatin (5 hours)
• Day 6, 7, or 8 (24-72 hours post chemotherapy)
  - Pegylated filgrastim (Neulasta)
• Day 15
  - Routine blood tests
  - Physical examination and vital signs
  - Assessment of chemotherapy toleration
• Day 22 of each cycle = Day 1 of cycle (n + 1)
• Day 85+ (End of TIP)
  - Routine blood tests
  - Physical examination and vital signs
  - Assessment of chemotherapy toleration
  - CT and /or PET scans

QUESTIONS

General

• What is my staging?
• What is my prognosis? Give me numbers.

  I read through the studies. I learned that patients in the main study (2005) had a 70+% survival rate after TIP. Unfortunately, all those patients had had chemotherapy as a part of their original cancer treatment (initial cancer, not the relapse).
  
  In the study that looked at TIP for patients who did not have chemotherapy as part of their initial cancer, the survival rate was 50%.
  
  Is there more recent research?
  What factors/variables were present in the surviving (or non-surviving)
  
  Where do I fit in the patient profile?

• What are the three top things you recommend that I do as a TIP patient?

Pre-Treatment

• Is there anything I should do to prepare myself physically for treatment?
• I have a dentist appointment scheduled for Thursday. Are there any other medical appointments I should make prior to treatment?
  - Audiology
  - Ophthalmologist

Post-Chemotherapy

• What happens after chemotherapy? What tests are performed and when? By whom?
• Post-chemotherapy surgery appears to be in my future. How long after the end of my fourth course of chemotherapy would I have surgery? What factors play into the timing?

Non-Sloan-Kettering Administration of Chemotherapy

• What are your concerns about my being treated away from MSK?
• What does the communication look like between remote administrators and

What will be will be what will be.
I've got this.

New (Part 2...The Details)

Gentle Reader, this post reports the details of my meetings at Memorial Sloan-Kettering Cancer Center on Thursday, September 12, 2013. It begins with a summary (the quick information), and continues with my detailed notes from the day.

This ain't art. It's history.

At the end I have a list of my outstanding questions. If you have any suggestions for me, please let me know. What am I missing? What else should I ask?

Summary

I am diagnosed with germ cell based cancer. Type 1b.

This is a cancer caused by a the type of cell responsible for testicular or ovarian cancer (gender-based). The reasons for this diagnosis are detailed below.

The Type is an early assessment. My CT scan indicates a self-contained mass. I am, however, having a PET scan tomorrow (Friday, September 13) to see if there is any spread.
 
It is considered a late relapse of my 2006 cancer (it was a non-semenoma, Stage IIb). "Late" refers to the length of time since my previous incidence of cancer (8 years ago).

The recommended treatment is an aggressive chemotherapy, referred to as "TIP" (an acronym for the three drugs administered during the protocol). The reasons for this recommendation are detailed below.

My immediate next step is a PET scan, to be administered tomorow (Friday, September 13, 2013). This test will identify any cancer sites in addition to the known psoas tumor (if there are any).

I have a follow-up appointment on Tuesday, September 17 to report PET scan results and clarify my treatment plan.

The decisions I need to make are:

• To TIP or not to TIP.
• Where to get my chemotherapy.

The latter decision is a difficult one. On the one hand I very much want to continue all treatment at Sloan-Kettering. On the other hand, doing so would be a logistical, financial, and emotional challenge. I will address this choice in another post.

For those interested, the sections below provide the details.

I thank you for caring enough to read this. I hope that it provides insight to someone, somewhere, some time that it matters.

Diagnostic Reports

I have two reports:

• Howard County General Hospital radiology (CT) scan report from August 26, 2013
• Memorial Sloan-Kettering Cancer Center Pathology Report.
  Procedure August 30, 2013; report September 10, 2013.

Radiology Report
This is a stub. I left the report at home and will update this post once I have the report in front of me.
What it reported was a 2.5cm x 3cm x 4.25cm mass along the left psoas muscle.

Pathology Report
The text below is verbatim from the pathology report.

Clinical Diagnosis and History
Current cancer DX: testicle. Surgical history: pocket of fluid collection in the left pelvis

Specimen Diagnosis

• Fine Needle Aspirate Left Pelvis
• Positive for malignant cells.
• Malignant neoplasm. See note.

Note
Immunohistochemical stains for CD30, AE:1AE3, OCT4, CD117 and SALL-4 are non-contributory due to poor cellular preservation. A D2-40 stain is positive. CD20 is negative, which argues against a B-cell lymphoma. The tumor exhibits extensive necrosis with few viable cells limiting the interpretation of immunohistochemical stains and morphology. The differential diagnosis includes a germ cell tumor. Reviewed at attending consensus conference on 9/10/2013

Statement of Adequacy
Satisfactory for evaluation , confirming the initial assessment made on modified giemsa stain.

0830 Appointment, Dr. Joel Scheinfeld

Dr. Scheinfeld presented me with the radiology report. He expressed the doctors' opinion that it is most likely a late recurrance of my original germ cell based cancer.

Regarding treatment, he could not offer anything definitive. Chemotherapy would absolutely be a part of treatment. Surgery could be a part of the process as well. Those decisions would be in te hands of Dr. Dean Bajorin.

He reiterated his confidence that all decisions to date had been correct. He referred to my decision to return to New York to see him at Sloan-Kettering, as well as the decision we made regarding the biopsy. Regarding the biopsy, he reminded that the decision to go through the vein (as oppose to the intestine) proved critical to getting non-corrupted samples.

He also expressed confidence in the prognosis. He expressed that while it is an out-of-the-ordinary situation, it is one they have seen before, so they know how to address it.

He informed me that as of my appointment with Dr. Bajorin, that Dr. Bajorin would now be "captaining the ship." Dr. Scheinfeld's role will continue as a consulting physician.

1030 Appointment, Dr. Dean Bajorin

I did not meet with Dr. Bajorin until after noon. I initially met with his resident, who gave me the basic facts. I had time to process the basics as I waited to meet him.

He arrived and examined me. He then sat and spoke to me at some length.

Germ Cell Diagnosis

He expressed that it is the consensus opinion that I have a late-relapse of a germ cell tumor. The opinion is not definitive.

Clinical Basis
As can be seen in the pathology report, not all the tests were able to be completed. The tumor has a great deal of necrosis (dead cells) inside it, and the tests rely on living tissue samples. That is why the stains for CD30, AE:1AE3, OCT4, CD117 and SALL-4 are "non-contributory"--they could not be completed.

This is because of the difficulty of the biopsy procedure. The biopsy used a very fine needle to penetrate a vein on the way to the tumor. As a result, only a small amount of tissue could be sampled. As the tumor itself is a mass containing a great deal of necrotic tissue, it was a risk that the samples would not be usable. Fortunately, working samples tested positive for malignancy (D2-40 stain), but showed negative for Lymphoma (CD20 is negative).

Circumstantial Basis
Several factors lead the doctors to believe that it is a germ cell tumor.

1. At my age, tumors in the pelvic region tend toward one of two causes; germ cell or lymphoma. Since the pathology reports negatively for lymphoma, germ cell is the likely cause.
2. My blood markers are negative. In the general population, tumor markers do not appear 30% of the time. In germ cell recurrences, that percentage approaches 90%.
3. Late-recurrence of germ cell tumors typically appear in the pelvis. Specifically, seminoma tumors, which are slow-growing, typically appear eight (8) years from the initial cancer. I am in year seven (7) from a nonseminoma tumor. However, my original tumor was 90% seminoma. By having any percentage of nonseminoma cells, a tumor is designated as nonseminoma. The point is that i had seminoma cells in my original cancer appearance in 2006.

So, based on the clinical findings and the circumstantial evidence, the doctors have diagnosed me with a late-relapse germ cell cancer.

Treatment

Three treatment plans were considered. One was recommended. There is no "Plan B".

Option 1: Surgery, Followed by "Standard Chemotherapy"

This was the original plan, pending detailed examination of the CT scans.

This was rejected, based on the scans. Analysis showed that the  tumor has invaded into surrounding tissues and structures, and they could not identify a surgical option without "negative margins". Surgeons use "negative margins" to refer to surgeries with a likelihood of cancerous materials remaining in the body after surgery. In other words, there is a low probability of surgery proving effective. Additionally, I know from my conversations with the radiologists who performed my biopsy that there are a number of arteries and nerves in that area, in addition to the major vein they penetrated. It's complicated.

Option 2: "Standard Chemotherapy" followed by surgery (if necessary)

I am using "standard chemotherapy" as lay terminology for BEP (bleomycin, etoposide, cisplatin), the standard first treatment for germ cell cancers. This option would have had me receive BEP treatments, which would be expected to shrink the tumor to a managable size. Surgery would follow on the smaller tumor, if scans and further biopsy indicated the necessity. The chemo would kill it, the surgery would remove it.

Unfortunately, BEP does not cure every patient. More relevantly, studies have shown that late-relapse cancers are resistant to BEP treatment. For late-relapse cancers, the "TIP" protocol has proven effective as a secondary treatment (following the initial BEP treatment).

Thus, option two has been rejected, as the diagnosis of a late-relapse germ cell indicates against BEP treatment.

Option 3: "TIP"

"TIP" refers to the three-drug cocktail administered (paclitaxel, ifosfamide, cisplatin). It is considered to be a more aggressive chemotherapy. Studies have proven it to be effective in two circumstances:

1. It has been tested as a secondary treatment for germ cell tumors, in cases where BEP has failed.
2. It has been tested as a primary treatment in cases with poor prognosises.

TIP would be four, three-week chemotherapy cycles. In each 21-day cycle, I would have 6-8 hours of treatment for 5 consecutive days. On day six I would receive a shot of pegylated filgrastim (Neulasta), to prevent me from getting an infection. Blood would be taken on day 15. I receive no other treatment until the day after day 21, which is the Day 1 of the second (and third, and fourth) cycle(s).

After 84 days, I would be re-scanned and monitored.

"TIP" is the recommendation, based on the diagnosis of late-relapse germ cell cancer.

It is worth noting that TIP was developed at Sloane-Kettering by the oncology group with whom I am working. They originated the protocol. It has been in use for fifteen (15) years, yet it remains uncommon.

Outlier

Dr. Bajorin: "You have an uncommon presentation of an uncommon disease. In 30 years, I have seen this, but infrequently."

Me: (smiling broadly and laughing) "I'm sorry for laughing. As you were saying that...I was thinking how typical it is. I'm always an outlier, you can ask anyone who knows me."

Dr. Bajorin: (smiles) "In this case, you certainly are. And "outlier" is the right word. We do "outlier" studies."

We talked about this a little. When dealing with a case like mine, they need to deal with paradigms. In effect, they use their experience to tailor a treatment for the way my situation presents itself. I don't fit in a neat box, with a clearly-identified protocol. While the doctors have seen my presentation and disease before, it is not common. There is a solution at hand, but the solution is uncommon.

I'm an outlier.

Plan B

I asked Dr. Bajorin. "So, what is Plan B?"

"Why would thre be a 'Plan B'?"

"It's the way I think and plan. I like to know my backups."

"Well, 'Plan B' was 'Plan A', or surgery. But we ruled that out."

I took two messages from this exchange.

1. He has confidence that TIP is the solution
2. If it comes to it, surgery will happen. Whatever the risks of collateral damage (my term), surgery would remove the mass.

Remaining Questions

As I write this, I do have a few additional questions:

• Many questions around logistics and chemotherapy.
• Could it be a nonseminoma cell? If so, is nonseminoma resistant to TIP?
• What about the tests that were "non-contributory"? I understand that circumstantial evidence points to germ cell. what is the likelihood of it being something that was missed by the non-contributory tests?
• Is TIP followed by surgery? If not, what happens to the tissues?
• What am I missing? What else should I ask?

(deep breath)

I will beat this; I've got this.

News (Part 1)

I've been hiding something.

Constant Reader, I'm sorry. Facebook followers, I apologize. I needed a little time.

Elvis* called me on Monday.

Yaddayadda...biopsy site doing well?

- Yes, it's fine. A little discomfort, but otherwise no infection and healing well.

Good. Well, unfortunately, it looks like you may have a re-emergence of your cancer. There are tumor cells in your tissue samples, and I want to set you up with an oncologist colleague of mine. He's world-class, and I think you should meet with him.

- (Swallows) Of course. Do you have any idea what kind of tumor I have?

No. Not yet. We're running a battery of tests against your samples now to figure that out. So, are you flexible to meet with him?

- Absolutely. I'm already scheduled to see you Thursday, so that would be ideal...

That may work out. Let me contact his office to see if he can get you in then. He sees patients on Tuesdays and Thursdays, and I know he needs to leave early this Thursday, but I'll see what I can do.

- Great. I need to ask a question for clarity. I'm hearing that you do not think it's an abscess.

Correct. We doubt it at this point. I have my team and several others looking at it. The tumor cells are present; we don't know what they are just yet.

- OK. Thank you. I'm available whenever he is available. I can come in tomorrow if necessary.

One of my team will get back to you with details.

So much for Limbo.

As I publish this, I know nothing else. As this hits the Interwebs, I am at Memorial Sloan-Kettering Cancer Center meeting with my doctors.

I'm a survivor in that place where no survivor wants to be—facing cancer's spectre once again.

Learning

In the past two years I've been tested. My marriage dissolved. Loneliness, abandonment, and heartbreak became my partners. Bankruptcy ever loomed. It was as surreal as it was unsettling, painful. The buildup redefined "weird". The separation...excruciating.

I missed my girls deeply. When I would drop them off—knowing I would not see them for days—my insides melted; I became walking dead. Inside, I was shattered. Outside, I maintained a brave face. Life went on...

At some point, I stopped being angry. To much had happened too fast. Like an over-stimulated nerve, I stopped feeling. Don't get me wrong, anger is still in there, and it surfaces, but it does not drive me. It's not my core. (And as I write this, I continue to wonder: what replaced the anger? What is this inside me? Is it resolve? Acceptance? What?)

Seismic forces shattered my life, and I was pushed to my limit. Then something would happen, and I was forced to discover new limits. Every time I thought I had a handle on things, something extraordinary would happen, stretching me once again. I was pushed, and pushed, and I found myself in uncharted space.

And I survived.

As I rebuild, I am a better person.

Now

Oh, I'm in a scary place.

Limbo is scary, because you just don't know. Now, knowing a little, I'm pushed to Limbo's edge. That means that I'm edging closer to reality. Ouch.

"...it looks like you may have a re-emergence of your cancer. There are tumor cells in your tissue samples, and I want to set you up with an oncologist colleague of mine. "

I know, "tumor cells" is not synonymous with cancer. It's what I cling to.

I also know that "oncologist" implies cancer.

It's not what I wanted to hear.

Inner Voices

Constant Reader, my head never shuts up. I'm blessed with a mind without quiet moments. It journeys on its own. I entertain myself. As I go through my every day, I'm always conversant with my inner voice. I imagine that we all have some form of this; as it happens, I'm comfortable with myself. My ever-present inner monologues and dialogues are me. They define who I am and how I relate to the world. I'm my own sounding board.

I don't always agree with myself. In fact, mine is a dynamic, challenging relationship. Don't get me wrong, I need to be grounded. I need friends and family to call me on my bullshit. I need interaction...

But I know that I trust myself.

In recent years I've learned to channel my voices constructively. And in the the past year, I've managed a life-changing milestone—I've learned to be with it...with me...without Depression.

It's awesome. I've grown, and much to my surprise I've gotten to a place where I am me. This past summer a dear friend said: "You're the most you I've ever seen you be...and that includes high-school."

It was high compliment. She affirmed—without knowing it—that I wasn't bullshit. Rather, I'm real.

And it feels good...

...and right now, I need to be that guy. I need to be me. I have to embrace my resolve, my core, my strength—as I try like hell to hold it together.

I need to avoid the dark places.

I need to embrace myself.

My limits are being tested...again.

Interlude

Pelotonia 2013, Day 1, I was planning to ride the 100 miles with a group of friends. Then the ride started.

I leapt out and started riding with the lead group. Nothing new here, with one exception. I was on a single-speed. For non-cyclist readers, that means that I had one gear—and I could only go as fast as that gear would spin (around 23mph at a crazy, unsustainable cadence). The lead group rode at around 25mph.

I hung on—spinning crazily above my limits, then coasting to recover, spinning crazily, then coasting—in the pack, until I couldn't hold it any longer. I then rode alone until another pack came up, and I joined in that pack—spinning crazily above my limits, then coasting to recover, spinning crazily...

And I did this for ~70 miles. Moving in and out of small packs, finding small spaces and hidey-holes, keeping out of the wind. And then there were none. And I was alone.

I finished—alone.

Later, when talking to a friend, I apologized for not staying with the group. "I can't really explain it, something inside took over...I wanted to find my limits."

(enthusiastically) "It's all good! So, did you find them?"

(pause)

"No. Not yet."

Inside

I'm a mess.

I'm a tumult, a whirlwind. I'm the crazy scribbles of a two-year-old exploring a fresh white wall with a new box of crayons.

There's anger.

There's righteous indignation—but why, I don't know...

There's sadness...and a healthy dose of whatthefuck-ness.

In the past two years I've spent a lot of time in places I never wanted to be. And I've been alone. I'm tired and sad. I'm lonely. I'm beaten down.

But I'm not defeated.

The past three days have been a special kind of hell.

But it's past me. As I talk to my doctors today, I seek clarity. I know knowledge mitigates fear. And I trust them.


I'm in that place no cancer survivor wants to be: right back in it. I'm forced to face my nemesis once again.

I'm stronger than you know, and I'm tougher than you know.

Bring it.

---

* "Elvis" is my nickname for Dr. Joel Scheinfeld, my Urologist at Memorial Sloan-Kettering Cancer Center. I call him that because he is The King. When he walks in the room, you know it. When he walks among his staff, he's The Man. It is a term of endearment.

Limbo

I may have cancer. I may not. At the moment, does it really matter?

Neither here nor there. Neither hither nor thither. Undefined. Unsure. Unsteady. It's awkward. I'll know what I'll know when I know it. Until then...until I know, I'm in Limbo.


This is the hard part—not knowing. I've done all I can and put myself in the best position I could and I've done all the right things and made all the right decisions...but still...I wait.

And that's when it can all fall apart.

--

Limbo is a wide-ranging land where hopes and fears collide. In it a father awaits the birth of his child, a mother sits in an emergency room...waiting...waiting for news. A bride awaits word on her soldier-husband. 9/11, and the days after...

--

Every patient has been here—the place where you know very little. The place where you need to wait.
You're on a platform, waiting for a train that will come...eventually. And it will take you...somewhere.
You stand there, largely alone, listening for announcements and peering down the track.

You don't know which direction your train will come from...or where it is heading...so you peer into the distance, seeing the track disappear into the grey horizon...

Announcements come. Some are sotto voce...you barely hear them over the heartbeat sounding in your head. Others are barked at the limit of the speaker's volume, assaulting your ears with tinny squawk. Most often, though—and most frightening—the announcements come in languages you've never heard, at times you least expect—and you scramble for understanding.

And you remain on the platform—comfortable or not—watching the distant tracks, waiting...waiting...

And as you stand there you visit Nod, that twilight before sleep, and your brain takes a vacation, allowing your imagination—your inner world—to express itself. And the fears flirt with the fantasies, until you're lost in visions where safety and danger are one and the same. The lion is pet and predator. Lovers become succubi. Enemies...friends. And all the bizarre creations within appear to your mind's eye for you to gaze upon, and consider...

And Limbo is having some version of this happen every minute of every day...with every breath.

--

Limbo is not "preoccupied". It's the next stage beyond.

You are preoccupied. You're in Limbo.

Being preoccupied happens, and it goes away. Limbo is a place—a specific state of mind.

--

I might have cancer, I might not. At the moment, does it really matter?

--

Where does your mind go? In your quiet moments, where are you? Do you focus on the immediate—the problem in front of you?

Do you trance out, listening to your internal soundtrack? You know, the one your DJ mashes together, with lyrics and tunes blended together, connecting in ways only you can perceive....

Do you fantasize about him/her—that idealized erotic someone with whom you indulge all your naughty and nice?

Do you space out—in that place in-between places, where your mind's eye creates and re-creates visions...and dreams?

What do you do? Some dive headlong into work. Some fret. Others fuck. Still others knit.

Some write or paint or music (I hate "make music" or "play music", why can't "music" be a verb? Writers write, painters paint, musicians...music. See?)

Some smoke or drink. Some cry. Some masturbate.

Others become manically happy. Everyone is different, but at the core we're all doing the same—managing...coping.

Because Limbo is a place where you have no control. And we need control. We seek control. We have control. We control. We influence. We direct. We've got a handle on it. We've got our ducks in a row. It's all lined up. Everything's in its place. We conduct. We arrange. We've got this.

We're delusional.

We think we have influence over things.

And it's a lie.

It's a lie we tell ourselves. It's a lie we believe. It's a lie that becomes truth, until...

Limbo puts two strong hands on either side of your face, holding your head in position—even as you struggle. No matter what you do, you can't move, you can't avert your gaze. You're trapped by its compulsion. It forces you to see those things you don't want to see.

Limbo makes you see with clarity one of life's great truths.

With certainty you see that the only thing you control is...YOU.

And that's the treasure at the heart of Limbo.

In Limbo we stand in stark relief against the chaos of life, and we are humbled.

--

There are things you know, and things you don't know, and the places in-between are scary.

Limbo is scary.

And in a twisted way, it's a blessing.

I know what I control and what I don't control.

And that's OK.


And...after a breath—a deep, cleansing breath...it's a relief.

--

I might have cancer, I might not.

At the moment, does it really matter?

Liars

Constant Reader: Again, I write from a hospital bed. Again, I beg forgiveness for any errors, grotesque or otherwise.

This is a strange post. It's an exposé/confession/thank-you. It is not intended to offend—rather, its intention it to appreciate YOU. (It just takes a weird path to get there...)

We're all liars.

Every one of us.

Accept it.

I know it's hard for some, but deep down inside you know the essential truth: we all assume masks, play roles, tell tales...

Breathe. Accept. Swallow. Move on.

It's OK.



I'm about to violate an unspoken rule. I'm violating omerta. I'm pulling back the curtain for a few moments.

I do this not out of malice, but for Truth's sake.

It's a confession.

And a thank-you.


Here's the secret:

The brave talk is a lie.
The positivity...it's a lie.

It's not that it isn't true—every word I've written about this experience is true.

But it's a lie.

It's not Truth; it's not fully honest.

If it were, if I really was that brave, I wouldn't need to put it out there.

The man who has power need not tell you he has power. He simply is.

I am not.

Seeming strong is a way of keeping myself from completely unraveling.

Projected Strength = Protection

Projecting strength—seeming strong for others—is a source of strength.

We do things we know are right. We write words that inspire. We share—experiences, thoughts, dreams—and we expose ourselves.

We allow light to shine in our dark places.

And we do it when we can't, when we least can afford it. When it's desperately uncomfortable...


And that's the lie.

We seem strongest when we most need support.



Deep inside, Constant Reader, you already know it.

When we're tired, and scared, and hurting, and confused, and unprotected, THAT's when we project strength.

Because when we do, it reflects back on us with brilliance and warmth. We get Internet hugs. We get real hugs. We learn how many love us and care about us. We see that beneath the thin veneer of everyday, there's depth to the relationships we nourish. Friendships have substance. Family is real. We rediscover that the people in our lives possess rich and wide experiences and deep emotional reserves...and they want to share.

...all because we lied.


OK, we didn't lie. We meant those courageous words, but it wasn't Truth. It was a plea for help. It was...hopeful.



And that's OK.

Really, it's permitted.

It's expected.

It's All About You

You, plural. Not you, individual. Not me. The Universal "You".


We lie because of you. Maybe that's mis-worded. We lie because we can, because of you. Nope, not quite there yet...

See, it's a feedback loop—a wonderful, blessed, generous, resonant, and fulfilling feedback loop.

We project strength. You return it with rich positivity. We project continuing strength. You reinforce the positivity.

And so it continues...



We fake it till we make it.



You, interestingly, don't fake it.

We get stronger with each exchange.

You, interestingly, don't get weaker.

It's a kind of magic.


And that's why it's OK—it's all about...the best part of you.


Back to the confession...

If I seem strong, it's because of you.

I have strength. I'm a stubborn bastard. I know how to fight; it's my core.

But I cannot do this alone. What lurks beneath frightens me. I have memory rooms filled with real horrors and projected anxieties. Those paralyzing places are...right there. But I act brave, and you encourage me, and that lifts me away from those fears.

And at some point—some magical point, acting brave becomes bravery.

Acting strong becomes strength.



We're liars, but our intentions are good.

We assume the mask, pretending to be the person we wish to be.

And—willingly—you help us to become that person...that brave, strong warrior.

There's magic in Us.

So, in a way, we lie because of you.

Isn't it wonderful?



Thus, I end my confession. I am cleansed.

I'm not as strong as I seem. But I am willing to fake it, because I know at some point—with your help—it becomes real.

With your help.

And for that, I am grateful.