thumbs up!

Day Two of radiation is done, and the radiologist is happy.  The beams are on target, the salivary glands appear to be safe, and the dosage -- not too much, not too little -- is hopefully adequate to produce necrosis.

This is only part of the target.  The other piece, lower on the spine, received radiation already, and wasn't discouraged.  Surgery, we know, is a temporary fix.

So this morning we visit with oncologist to hear about the promised new tricks.  We are given the name of a drug previously unmentioned.  Not a new cancer drug -- it has been used in thousands of lung cancer patients -- but its track record for chordoma is exactly one patient.  In Germany.  With results that "seem encouraging."

One patient?  Encouraging? Wouldn't a dose of asparagus produce the same, without the side effects?

And what, I ask, about the two drugs mentioned in previous visits?

Well, maybe, he says.  But he is intent on this newer possibility, if he can get approval from the insurance company.  He leaves the room, and five minutes later comes back, smiling happily and giving us a thumbs up.  Yes!  We can go to the pharmacy and get it filled.

Neither Rich nor I smile.  I don't share the physician's enthusiasm.  Rich is not my trial monkey.

Aren't we doing this backwards?  To cure, why are we hurting?

So much I don't understand.

But we go out to a favorite bistro for lunch and have our soups and salads and wine, and walk along the Hudson, and the rest of day I'm humming I'll see my love tonight from "West Side Story" and believe this song will never end.

Candace

burning

When I write, I bid farewell to myself.

---Jimmy Santiago Baca, Poet

In setting down the words, the heat dissipates.  This is why any hack can pull off a sex scene, but love's the challenge.  The first may be hot, but its purpose is focused and the goal is clear.  Love, however, is a landscape shot that goes on and on, diffuse and multi-dimensional.

Okay.  I'm a hot bowl of gumbo soup, a chocolate biscotti, and a cafe au lait (yum)away from the fire of a few hours ago.

"Yikes!" is Rich's e-mail message.

We were all set to go to New York for radiation, reservations made, when Rich learns that, by the way, his first session is scheduled for tomorrow, not Wednesday.

"We never do first-time patients on Wednesday," he is told.

Since when?  Four days ago?

What to do?  

What is the choice?

Rich can be in New York in time if we get up at 4:30 a.m.  He makes reservations on the bus, cancels the other.

For some reason, I got angry.  But for another unknown reason, it didn't stick.  I went for a walk, I sat for an hour with a neighbor's dogs and appreciated their wagging tails, nuzzles, whimpers. I stroked Thunder, our cat, and reminded him to record the karma incurred by the schedule-makers at Sloan Kettering...

But pain is a lot like love.  Get enough of it, and each pinprick dissolves into its vastness. That's why I write about it.  Because I lose the angry part of myself, laugh at its absurdity, and know that life, too, is much greater than all of its parts.

Off to New York!

Candace

whining sounds

Whatever a person frequently thinks and reflects on, that will become the inclination of their mind.

--Buddha

During our recent New York trips, I've been on buses and trains a lot.  And I decided to pay attention; not that I don't do this at home, but in New York I can hear hundreds of conversations each day from all sorts of people.  

And one thing became clear. In this, the wealthiest city in the wealthiest country the world has ever known (and, my guess, will know), people whine.  Constantly.  Rare was the conversation, face-to-face or, more frequently, mobile-to-mobile, that said anything approximating: I'm fine!  Life is great!

To find that, I visited Rich on the neurosurgery floor.  There, despite looking like an audition call for a Frankenstein play, men and women (more men, don't know why) with staples in their heads and rips down their spine shuffled a loop or two around the corridor.  When complete, they said:  Great!  I'm doing well!

Not always, of course.  Some on the floor could barely raise their heads, and when they did couldn't say where they were.  But, still.  In any contest, their cheeriness trumped the folks on the bus.

What we think is -- we think -- the only reality.

Now that's a thought that depresses.

candace

 

about face(book)

"People with opinions just go about bothering one another."

--Buddha

Not too long ago, I expressed a negative opinion about Facebook.  While still wary of its overuse and light use of the meaning of  "friend," I'm willing acknowledge its value as a one more way of being close to others.  So, my page is slowly filling, with a profile photo now posted and, sometime in the near future, photos of life here and in our chordoma travels.  Please feel free to get in touch if you would like to "sign up."

What's next:  New York (surprise!)  Next week, for eight days, for Rich's radiation.  Maybe this will be the first trip in which we have the time and energy (and Rich isn't attached to tubes) to play tourist and absorb some of the good stuff -- shows, museums, visits with friends.

Rich's surgeon says that Rich is a "very good place," chordoma-speaking.  I'll take it.

Candace

some moments

Some moments, I forget that this is a good week.  We're home, probably for six more days.  Long enough to resume a normal rhythm, but I don't know what this means, not anymore, and I'm not sure what such a thing would be, again.

Some moments, I forget Rich has cancer.  He is at work, today for the first full day since the last surgeries.  He is wearing a tie and attending meetings.  Once this was ordinary.

Some moments, I forget what happens next week, and the weeks thereafter.  Radiation and its knock-on effects.  Chemotherapy.  If they "work," he will be in pain unknown.  If they don't...but that's a hundred years away.

So I don't worry.  I don't want to waste a good week.

Candace

no chocolate in the middle

In one of the waiting rooms (more about this soon) I overheard a man saying to his companion:  Good news.

Good news?

Yes.  He found a place to park near the hospital.  

Good news, I agreed; not what we wanted, but put enough stuff into the good news category and, hey, soon we have a good day.

Before leaving for the hospital, Rich receives call from physician at home.  Blood tests done on Monday, ready Tuesday but not yet sent to Sloan Kettering, show anemia and low protein count.

Not good.

Meet with neurosurgeon, view Rich's films, and while I cannot see much of anything that makes sense, Rich is disappointed in how much tumor remains which will be left to the uncertain power of radiation and chemotherapy.  Maybe he will need blood transfusion for anemia.  Eat more steak (tofu, anyone?) for protein.  

Not good.

Time to see radiation folks.  First receptionist says no, not this floor; when Rich produces his appointment sheet, it's still unconvincing.  Go right, left, don't take "B" or "C" elevator, but "R."  Next receptionist says no, not me, go across the hall; we do, next receptionist asks for his name and insurance (why?  this is all on file) and sends him back to receptionist #2 who slides a folder across the desk and says go left, right, straight, take elevator to another floor.

This, at least, was the right floor.  Then, Rich fills out more forms, we wait, we wait.

Then meet with radiation team's resident.  Then radiation team's head doctor.  Then radiation team's fellow.  Then radiation team's nurse.  No liquids tomorrow before myelogram, doctors say; clear liquids tomorrow, that's fine, says nurse.  Post-radiation, extremely bad sore throat for weeks, says doctor; may need narcotics to control.  Some chance of sore throat, just be careful of spicy foods, says nurse.

I'm starting to like the nurse.

Three hours after arriving, we're done.  Lunch?  We're too tired to know if we're hungry or not, but we eat, and realize we are.

"These are the good moments," I say.

Rich, finishing his three-cheese (protein!) lasagna, quickly comes back with a litany of next week's medical appointments, then back to New York for radiation, then chemotherapy, then...

"This moment," I say.  

It's good.  This is what we have to add up.

Coming back to our room, we realize the heat isn't working.  We are moved to another room.

Good enough.

We end the day with a big dinner (no solid food for Rich for at least 17 more hours), and we are given mints.

"Is there a chocolate in the middle?" I ask him as I unwrap the ball and pop it into my mouth.

He doesn't remember from the last time.

No, there isn't.  

Good enough.

It's adding up.

Candace

not making sense

Rich just emerged from our tundra of a bedroom with a mop.  To clean?  Surely not.  That would make sense.  To close a window.   Respecting the laws of physics and responding to gravity's pull, it descends without human intervention, noticed primarily on nights that dip into single digits.  I'm too short to close it and Rich can't stretch that far, so the mop is his long arm.

And a few nights ago, when Rich was in a funk about his swollen feet (no big deal, said yesterday's doctor), Thunder the Most Mellow Cat begins dashing from doors to windows, howling and bent for hell.  Makes no sense, we thought; where's the enemy?

Tomorrow we go to New York for pre-radiation procedures which, I'm sure when read about someday in the future, will make no sense.  Nor do they now, but I can't condemn them because I see no choice.  Let's poison Rich some more, that's what's next.  So he can be well.  Or better, at least.  

Off we go.

Candace