'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.