Come to Jeezus

Honest, constant, dear reader, this has been a trying week.

I'm exhausted. I'm emotionally and mentally tired. I've not posted in a while, a clear sign.

Physically, I'm uncomfortable. I have pain, I get tired. It's manageable.

Emotionally, I'm holding it together. There's no sadness or anger. There's a lot of concern and anxiety. Fear is a big part of my life—and I'm not comfortable with that. And I'm lonely.

Mentally, I'm a mess. There are a thousand things needing my attention, and they require concentration. But I'm lacking focus. I'm not sleeping well, which contributes mightily.

I'm out of synch. I need to find my rhythm. It's one of the hurdles I need to leap...and I will. I started writing this at 0400 Wednesday morning. I have two more posts in the hopper. After a week of silence, I'm about to send out a lot. Fair warning... 

Today is Hopkins Day. Look at your calendar, isn't your calendar marked "Hopkins Day"? No?

A week ago I was at Memorial Sloan-Kettering...again. A week ago I had my "come to jeezus" meeting with my New York team. It was the beginning of my slide...

Not that it went badly—it went as well as reasonably could be expected. It brought everything closer,  less abstract. It made it real.

Old Friends

It started with the clickityclack of the train, rolling northward to New York.

By now, it's become routine. I park in the same space at the railroad station garage, wait on the same spot on the platform, sit in the same seat (quiet car, 'natch), plug in my devices and write/read/doze until the seat next to me gets occupied (usually Philadelphia), and read for the remainder of the journey into Manhattan.

This trip I met a friend from high school. As prep school lads, we have a bond that effortlessly bridges the years.

Sitting in an East Side diner, I was comfortable and comforted. This was all according to plan.

When he emailed me to tell me he hoped to see me on one of my trips to The City, he had no idea how good his timing was. I knew this would be a rough trip, and that I needed support.

Yes, I knew that I didn't want anyone to join me with my doctors—it's too much for me. Other people's energy—that's the problem. It may sound woo-woo, but it's the only way I can describe it. Other people are...people. They bring their spirit and energy to everything they do. For the most part, we don't notice—it's only when people are notably positive or negative that our spidey-senses tingle, and we're reminded that just by being around you, others can influence your mood.

On this day, I didn't have any patience for that—right now. Going into this meeting, I needed clarity. I needed space. I needed to not be burdened by anyone else's impatience, anxiety, concern, solicitousness, or needs. I had to be perfectly selfish; I needed to exclude everyone. In order to get through this, I needed peace.

Which is why breakfast with an old friend was perfect. I was able to feed my needs. I could laugh, swap stories, listen, care, and not think. I could just be.

And for those two hours, I did. And I was.

And it was good.

Walk the Walk

MSK is no great distance from the diner, but it's a world away.

New York is magnificent. It's one of those places where you can hide in plain sight. So many people, so little space, so much energy, so much to see, smell, hear, feel, taste...

In the time it took to walk ten blocks, I was transported from a kind of peace to...something different.

I aged—a lot. Waves crashed. Anxiety rooted. Fears rushed in. By the time I got to the playground I had become jelly.

Unsettled, deeply. I called another friend.

This friend's energy is enough to light up a small, Midwestern city. He's a character—someone easily chalked-off as an insincere mercurial flake—but if you look into the pool, not at its surface, you find him deep, passionate, and loving. He's a dear friend I trust completely.

As I dial, I know that if I can just talk to him, all will be well.

He answered.

"Tell me something good," I said.

He did.

Major uplift mojo.

The details don't matter. What matters is that he was there when I needed him.

Come to Jeezus

There is something religious about these meetings. Like meditation, you need to clear your mind of all extraneous thought.

To be effective, you set aside fear. You live in the moment.

You block the noise and listen for the signal. You trust your intuition.

You have faith. You doubt.

You're tested, and you emerge affected.

You're no longer the same. Something shifts.

Me? I was useless. I couldn't focus. The playground didn't help. The phone call did, a little. But I was a mess.

I strode into the building, wheeling my overnight bag as I have so many times previous. But my stride lacked the confidence and focus of other journeys. Something was wrong. Doubt was strong within me, and I couldn't control it.

I rode the elevator with Doubt, feeling the closeness of the ceiling and the confinement of the walls. Panting, I struggled for calming breaths. Sweat trickled down my armpits. My feet and hands went cold. This is how panic starts...

Then the door opened, and I crossed the threshold into a familiar place. And...everything changed—again.

I felt sunlight warmth pouring through the windowed wall. I delighted in the space. I closed my eyes—for just a moment—and breathed. I reset myself. What will be will be what will be. I've got this. I checked in.

By the time the nurse took my vitals, I had calmed completely. My heart rate and blood pressure were normal.

I was back. I pulled out my papers and reviewed my notes.

Let's roll.

Answers and Questions

Beau (as The Nurse), Dr. Tully (as The Resident), and Dr. Bajorin (as The Dude) flowed the information, and I was awash in detail. Some was review, some was annotation, yet more was new. It was a lot to absorb.

And that, Kind Reader, is the best explanation for the delay in this post. It was intense, demanding, and—while not overwhelming—challenging. It took me a week to process it. No mere train ride was going to help me after this one.

Biopsy 2 had gone well. As it happened, the bowel prep was sufficient for Dr. Erinjeri to get a straight shot and a clean sample. No ballooning of the bowel was necessary. So, crapping my soul proved valuable. Lesson learned.

Unfortunately, the test results were inconclusive. They were non-diagnostic. The results were no different from Biopsy 1.

Incontrovertible evidence was the goal. We fell short.

This brought us back to square "I-don't-know-what-number"...not Square One...maybe Square 8...we did not pass Go...someone else collected $200...we were back where we were.

We were in the place before Biopsy 2, where we had mapped out several possible outcomes:

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

In the wake of the inconclusion, the team considered other biopsy options, and rejected them. The fact was that Dr. Erinjeri had gotten a clean, solid sample—textbook stuff—so it made little sense to start drilling my hip.

They also reconsidered surgery. They looked carefully through my scans, and returned to the conclusion that surgery is too risky. The size and placement makes it a challenge, and there is a significant risk of seeding my abdomen with cancer cells. That would not be good. Like, "tell him about the Twinkie" not good.

With the results squarely in option #2's camp ("Who does #2 work for?"), we were relying on clinical judgement to make the call.

Walks Like a Duck...

Dr. Tully stated it best: "It walks like a duck and quacks like a duck, but it's wearing the wrong dress."

Placement, timing, my cancer history, presentation all indicate a germ cell tumor.

Teratoma remains a slim possibility (that damned dress!), but the broad, deep, seasoned MSK team believes it to be germ cell. And if germ cell, then TIP.

No surprises. I breathed. Not happy. Not sad.

I sucked the air in and held it, forcing time to stand still. Eyes closed, I focused on nothing. I watched the eyelid kaleidoscope shift, the colors fading to grey.

No surprises. A body blow, but no surprises.

Dr. Bajorin then calmly said exactly the right thing at the right time: "I have no reservations about this decision." Thirty years of clinical and research experience spoke to me, and I listened.

No reservations.

Devilish Details

The recommendation is thus:

• TIP chemotherapy
• One month (or so) for recovery
• Abdominal surgery to remove whatever remains

Three bullets. So simple.

Oy.

It was my turn: question time. I worked through my list.

Can I/Should I get a flu shot?
Yes. Absolutely. Get it now.
OK, sounds reasonable, and they are giving them at the office tomorrow. Cool. 

One of the cisplatin side effects is hearing loss (that may become permanent). Do you recommend an audiology baseline?

It's true that cisplatin is ototoxic (can cause damage to the ear, specifically the cochlea or auditory nerve and sometimes the vestibular system...), but we don't recommend a baseline test. We recommend it if TIP is your second line chemo, having already had BEP. Even then, it's only a reference data point. The cisplatin dose will not change, regardless. The only way to mitigate it is to reduce the percentage of cisplatin, and that will not happen.
So, to my friend the audiologist I write...we'll see. I may push for this. For me, a lot depends on timing and logistics. I'd love to see you, sit in your booth, and listen for the beeps. Hell, I'd love to flirt with you! But I'm not sure it's gonna happen.

Are there any changes to the protocol, compared to the clinical trial documentation I have?
No changes. It's exactly the same.
Cool. That makes it easy to set expectations.

Will I get a port?
Maybe. It depends on the facility. There's a 3% risk of infection with ports. If you got treatment [at MSK] we wouldn't use a port. You have great veins.
I don't like this answer. The IV they put in for Biopsy 2 still feels weird. It was in the vein along the forearm bone just by the wrist. I hate that placement almost as much as I hate the back of the hand placement. This will be plenty uncomfortable as it is... 

I already went to my dentist. I got a cleaning and a filling. He warned me about possible side oral effects, and I had read about them in the literature. What should I expect?
Chemotherapy kills rapidly-producing cells, like saliva. For many patients this results in dry mouth and sores. You can manage it with an oral rinse made from one tablespoon baking soda to one pint water. Or, you can use a non-alcohol-based rinse, like Biotene.
Again, what I expected. A colleague of mine-who continues breast cancer treatment—kindly gave me a bottle. T'was a lovely gesture of support.

I understand that there is a risk of long-term cardiovascular side effects. Can you tell me about those? As an endurance athlete, I'm concerned.
There's a very small risk increased cholesterol and increased blood pressure in certain patients, who were already prone to those disorders. In your case, the chances seem remote. Your cholesterol is perfect, and you are typically on the low end of normal for blood pressure.
Cue: sigh of relief.

What other additional medications I should expect to be taking during treatment?
Antiemetics. Absolutely. Everyone reacts differently to the medications, and patients tolerate the regimen differently, but antiemetics are the most common. You may get an acid blocker, also to help with the stomach.
What about Claritin? I understand that people take it to help with the pain.
You're good. Where do you get your information? It's true that many patients take Claritin prophylactically for bone pain. There's anecdotal evidence that it helps with the pain associated with Nulasta. When the bone marrow is stimulated (to create blood cells), the increased marrow activity causes pain. There is no clinical testing to prove that it works, but people take it with no harm done.
No surprises. Prophylactically...I love that word. Gotta protect my bones from getting pregnant!

Anything other meds?
You're probably going to need Colace and/or Senokot. You're likely to get constipated, but it's difficult to predict at this time. You'll know during the second cycle how your body will react.
Ah, joy of joys! I'll have more opportunities to wax rhapsodic about me bowels! Brilliant!

OK, let's talk about side effects and age...

Neuropathy

All three of TIP drugs—paclitaxel, ifosfamide, and cisplatin—are known individually for having neuropathy as a side effect. Mix them together...

Peripheral neuropathy—the type I am likely to experience—is a disorder of the peripheral nerves—the motor, sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. It usually affects the hands and feet, causing weakness, numbness, tingling and pain.

Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and burning pain.

Fun stuff.

Neuropathy affects the distant nerves—those that reach your extremities. It may be temporary. It may be permanent. You never know until you know.

My Biotene-generous colleague has permanent numbness in her feet. It's not fun for her.

This scares me.

Constant Reader, are you as tired of reading "scares" and "scared" as I am of writing them? Crikey. Maybe I need to dig deeper into the thesaurus. Perhaps "tremulous", "quivering", or "shit-stained" would be better?

As it is, my feet get numb. They're numb now, as I sit typing. My hands and my feet get cold on the warmest days, and they're often numb. It can be annoying, but I deal with it. It's normal; it's my normal.

Listening to The Dude talk about neuropathy hit home. I ride bicycles. I love to ride bicycles; it's a passion. Riding with permanently numb feet, weakened muscles...

Can we please change the subject. Hey! It's raining! Cool! Mud for the weekend's cyclocross racing! 

Neuropathy is duly noted.

(breathe)

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

You're Old

Facebook friends are greeted on their birthdays with the following: "You're old."

I usually write something pleasant after that, often with a bit of humor. Heavens forbid that I write "Happy Birthday" (it's so pedestrian!).

Sitting with The Dude, I felt old.

I'm well outside the population curve for my disease. I'm older by a decade or more than most patients. It's something that has been made clear to me on countless occasions during my cancer odysseys.

It's also been emphasized that TIP is aggressive, and that there is a select population of older gentlemen who have been through the regimen. ( That was a genteel way of writing: "very few old bastards have been through this meat grinder".)

So, I asked about it.

I know that my age is a factor. Based on your experience, what additional risks am I facing because of my age?

The answer was long and detailed.

The Good
Let's start with the good. You're in excellent physical condition. Recent weeks notwithstanding, you may be 45, but your condition is that of a man in his early 30s. That's a huge positive. We have no doubts whatsoever about your ability to tolerate the treatment. You'll get through it fine.

Also, you have virgin bone marrow (Stop snickering in the back there, you!). Since you have not had chemotherapy before, your system is fresh and healthy. This should help you to recover more quickly.

The Bad
There's no sugarcoating this. It will be difficult for you. And your age will make it rougher.

Most men who get this are 35 or younger, but remember, you're in excellent health and condition.

We have given this to men in their mid-50s. It was rough on them. But in each case, they had been through BEP previously. Unlike you, they had been through chemo. So, again, you have an advantage. But it won't be easy.

So, what about age specific side-effects?

The biggest is myelosuppression.

Constant reader, an interjection. Myelosuppression is condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells, and platelets.

Because the bone marrow is the manufacturing center of blood cells, the suppression of bone marrow activity causes a deficiency of blood cells. This condition can rapidly lead to life-threatening infection, as the body cannot produce leukocytes in response to invading bacteria and viruses, as well as leading to anemia due to a lack of red blood cells and spontaneous severe bleeding due to deficiency of platelets.

You will have a high risk of infection. Your low white blood cell count will make you susceptible to everything. And we don't know how you'll respond to pegfilgrastim (Neulasta). You're going to need to be vigilant about staying clear of potential infection.

If you were being treated here [at MSK], I would tell you to expect to be admitted at least once every cycle for some sort of complication.
Admitted?
Hospitalized. A fever can kill you. We don't want that.

Gentle Reader, let's take a step back.

• A fever can kill you.
• Expect to be admitted at least once every cycle for some sort of complication

Now, look at the calendar. Let's assume I start chemo during the last week of October. That means that I'm going to be immunosuppressed through the holidays...through cold and flu season.

That's another sobering message—and one that's hard to absorb.

Consider: my little angels are 11 and 7. They're in school, that magnificent incubator of all toxicities. 

In my best case scenario, I could see the girls during week three of each cycle. But my best case—when I am feeling well-enough to be around them—needs to overlap with their not having the sneezes, sniffles, coughs, or colds. And even then, they are carriers of heavens-only-know how many bugs, germs, and viruses.

So, in the second holiday season after separating from their mother, I may not be able to see my angels at all. 

Ouch.

Honest Reader, you now have some idea why I have been emotionally exhausted.

Neuropathy was sobering, as it may have serious lifelong impact. Myelosuppression, though, is harder.

Imagine not seeing your children for three months, when they live just there.

Skype is a wonder, but it's no substitute for bone-crushing Erin hugs and tender, Julia arm-hair caresses.

Jeezus.

It's one thing to know of a thing, but quite another to stand nose-to-nose with it. No sir, I don't like it. 

With my stomach in something of a knot, I went to that place that all patients go: numbers. What are my numbers? What are my chances? Where do I stand? So, I asked.

Prognosis

I don't have one.

It's sobering.

Hell, at this point I'm so sober that an entire bottle of my beloved Sam Houston whiskey wouldn't affect me at all.

Our conversation danced. We "talked around it". I pushed. He deflected. I pushed harder. He deflected more subtly. I snuck up from a different angle. I almost got him, but not quite.

I asked the hardest question I've ever asked anyone: "Am I here in five years?"

He paused, considering. "You have a good chance of being here in five years. That's why we're going through all of this."

Gentle reader, you're asking yourself, "Why no prognosis? What game are they playing?" Its no game. I understand it. I dislike it and it's scary, but I understand it.

They won't give me a prognosis because they don't have incontrovertible evidence of what it is. They can't give me a prognosis because they don't know.

I will get a prognosis...some day. After the chemo, when they can see the difference between the pre-chemo and post-chemo tumor; after they perform the resection surgery to remove the bastard; after the labs analyze the mass(es) they remove; then, and only then, will they know enough to give me a prognosis.

I know. It's not the way we expect it to be. It's not the way we want it to be. It is.  

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

Logistics

Finally, we talked about the gorilla in the room.

OK, you win. We talked about the other gorilla in the room. There are so many to choose from...

Gently, they made it clear that they would prefer to treat me at MSK. In fact, I would prefer that they treat me at MSK. But that reality seems remote.

The Dude gave me three names at three facilities in the Washington, DC area.

• Georgetown was his first choice. He works with the recommended oncologist on a regular basis, and she is very experienced with germ cell cancers.
• Johns Hopkins was his second choice. He thought that Baltimore would be out of the way for me, but he put this one on the list because he has known the recommended oncologist for thirty years.
• George Washington was the third choice. The recommended oncologist does not have long experience, but she is very good, and The Dude co-teaches a course with her.

We talked a little around the recommendations. The Dude stated that his team would do everything possible to help me navigate the entrance loops to whatever facility I choose. I would handle it from the patient end, and they would directly contact the physicians on the back end. Somewhere in the byzantine, bureaucratic medical center maze, we would meet.

We shook hands, expressed pleasantries, and I was left to myself.

Alone in the examining room I sat, staring at nothing, thinking little, feeling less. It had happened. Chapter closed. And another chapter would begin as soon as I opened my eyes and got on with my tasks.

So I indulged. I sat, quietly. I delighted in nothingness. I watched the flickering pink in my mind's eye.

And at that moment...that right moment...I sucked in a deep breath, expanding my chest to bursting. I let it out...slowly. I stood, and I said:

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