no more trips

Burial plot.  Hospice.  Medical bills.  

But also friends visiting, laughing, my going out for errands and stopping at favorite coffee spot where server asks, how's it going, and I tell her, and she starts to cry.

"Cafe au lait," she says, quickly scooping up my mug.

She knows what I drink, and she knows what I want, but for now the drink is the best anyone can do.

We're back from New York.  No more trips, I guess.  The intraarterial chemo procedure was pronounced a "success."  As always, Rich was a good guinea pig, tolerating well the procedure, the 26-hour fast because the procedure was delayed eight hours, the screw-up in pre-procedure tests -- all the while observantly noting the almost-hourly loss of function of his body.

Rich can still shuffle on his left leg, and has use of his left arm.  But gone are the right limbs, and numbness is spreading upward into his torso.

Tomorrow I will call hospice for an assessment.  We will buy burial plots in a local "natural" cemetery.  It doesn't matter, Rich says, but still...it would be nice to be next to one another, in the hills and forests, in walks we can't take today, but who knows...

Candace

another day

3 a.m.

Rich lurches back into bed.  Pissing isn't going well, and getting there isn't an easy ride, either.

"Do you really think you can make it to New York and back?" I ask.

I can't pick him up if he falls.

And let's weigh the benefits versus the risks, I say.  Getting up at 4:30 (as if I'm going back to sleep) for removal of PICC and sutures, plus meeting with doctors, and returning home at midnight -- doesn't make sense.  We can find someone to take care of the medical stuff here, and why not a conference call?

4:30 a.m.

I cancel bus reservation.  

Thunder the Cat howls.  Out he goes.

9 a.m.

Rich starts making phone calls.  To his primary care physician, twice.  Can he remove PICC and sutures?  Nurse hesitates; yes, though this is unusual...appointment is made for tomorrow.

Rich calls neurosurgeon's office, they call him, he returns call, they call and we miss it, and finally connect for conference call.

Visiting nurse calls.  Rich gives her an update.  The IV antibiotic has been stopped, at our initiative.  We are to put all of the unused packets in the landfill, not water supply.  This makes so much sense.

Thunder the Cat comes in, goes out, comes in.  Goes to sleep.

12:16 p.m.

Almost precisely on time, conference call begins with neurosurgeon, radiation oncologist, and, mostly, the physician (interventionist?) who will do the intraarterial chemotherapy.  Never before used on chordomas, but with a history for liver, melanoma, and some neck cancers.  In this procedure, a nice dosage of Cisplatin (a drug based on platinum) will be dumped directly onto the tumor.

Our neurosurgeon says we have to give this a shot.  He hopes we hit a home run.  I hope we're not SOL.

Rich cancels tomorrow's local PICC removal.

I make bus reservations.  Rich calls one of our amazingly caring catsitters to do yet another two-day stint.

Thunder awakes.  Eats.  Howls.  Goes out.

1:30 p.m.

We head out for lunch.  Rich moves unsteadily, but not using a cane yet.  That remains at home, though I dusted it off and adjusted the height.

Rich talks about housing and car issues, and my health benefits if he pre-deceases me.

While I drive home, Rich returns a call to physician's assistant to schedule the MRA, pre-op, and procedure time.

After much chatter, Rich hangs up.

"We just learned nothing," I say.

Rich agrees.

I make reservation at hotel adjacent to hospital.  Expensive, but convenient.  But compared to the cost of the procedure -- as of now, not covered by insurance -- who's counting?

3:30 p.m.

It's almost June but we're both shivering.  I start fire.

Attempt to nap.

Thunder howls.  Goes out.  A rain drop falls on his head.  Howls.  Comes in.

3:45 p.m.

More phone calls to set up times of procedures and tests, with assistant and her assistant. Except for blood work, we're now set.

"Have a great night," assistant's assistant cheerfully says.

4:30 p.m.

Rich tries to sleep, but can't manage to rest with non-stop spasms in legs.

Thunder howls.  A baby rabbit is in his mouth.  He stays out.

Time to start dinner before packing and whatever else the night brings.

As always, we will hold the other's hand before eating and say, "Another day."

Tomorrow, too.

Candace

celebration

Yesterday, while Rich was in the emergency room, I stole away for forty-five minutes.  To my favorite coffee place, for sugar and caffeine, and briefly taste another world.  I would also get a carrot muffin for him, after he completed his CT scan.  

Yesterday's concern:  Increasing heartbeat, weakness, some shortness of breath, possible movement of PICC (the catheter snaking up his arm and into his heart, where IV is poured). So, for peace of mind, we went to ER.

A s I drove to the hospital I thought:  How many times have we used the many hours we would be in ER to instead relax and enjoy a Sunday?

Forget this thought.  It's gone.

So I sip an excellent cafe au lait and watch a two-year-old at a nearby table celebrating his birthday.  Or, more accurately, his grandparents celebrating his birthday, joyfully spooning a tiramasu (sophisticated kid) into his mouth, opening his card and watching the bills float away, playing with his Matchbox cars.

And here I am, the anthropologist, absorbing something foreign and intimate, leaving me confusedly sad and longing for what I don't know.

Rich is almost ready to leave ER when I return.  He eats his muffin, removes his hospital gown, and we learn that his heart is okay and nothing seems amiss.

That was morning and afternoon.

Then comes evening.  His hand becomes numb and fierce pains shoot through as the IV begins. We stop the pump, call the appropriate on-call doctor in New York, and he says hold the morning IV until doctor-in-charge calls.  I'm ready to pull out the damn thing, so holding is easy.

And now it's morning again.  Each day is worse.  Rich is having trouble signing his name.  He tries to stand, tries again.   Visiting nurse comes.  We talk with on-call doctor.  Come to NYC tomorrow, he says, we can check it out.

We have other visits scheduled tomorrow, too.  But, if we are still able to go, there will be nothing to celebrate. 

Candace

the world is flat

True, I've seen the photos.  What we call Earth is a bluish globe, hanging in the darkness, and definitely roundish.  But in me is my grandfather's distrust of scientific achievements.  When humans started shooting themselves into space and photographing their trip, he still confidently commented:  "It's only a movie."

Because nothing in his experience taught him otherwise.

So I assert that the world is flat.  This is my experience, because right now Rich is not going 'round and 'round in expectation of returning to the same place.  He's falling off the edge.

Which doesn't fit.  I sometimes described Rich as the sort of person who, if he decided to take a one-year trip around the world, and said he would return at 5 p.m. on May 22, and I said:  "Oh, by the way, pick up a couple of bagels on your way home," I knew by 4:45 on May 22 to have the butter and cream cheese ready.

Because Rich keeps his word, always, and will always come home.

But not now.  I'm afraid as I watch him approaching the edge, and as he slides faster and faster I want to kill the bastard who's pouring the grease making his path slicker and slicker -- but, of course, there's no one there.

What I do see is Rich's heartbeat beating too fast, probably because of the antibiotic which, both of us are still convinced, may not be at all necessary.  And I see progressing weakness in his leg, pains in his neck and arm, shortness of breath, and some of it (probably most, at this point) is caused by the drugs that will "save" him.

I don't see the edge, not yet (is that because my eyes are closed?) 

But I whisper, "it's only a movie...it's only a movie..." 

Candace

a new mantra

Each day now is ripe with opportunity for using my new mantra.

Quite a few such moments happen during Rich's twice-a-day IV antibiotic infusion.

When, while priming, the antibiotic pours out of the tube and we don't yet remember what to push or pull or twist, and meanwhile it's running on Rich's pant leg and onto the floor...ohshit ohshit ohshit.

And when I drop the syringe, now no longer sterile and need to prep another, or when I forget to change the bag, or uncrimp the tube, or Rich steps on his tube and feels it re-arranging itself in his chest, or when it's ten at night and I'm removing the tube and the damn thing is stuck in his arm...ohshit ohshit ohshit.

But When Rich returns from a short walk and says his right leg is weak, and he can't hold it up, we both agree that another mantra is called for.

Fuck this shit.

There is some good news.  Rich's spinal leakage appears to have stopped.  He can now sleep lying down.  He may be able to shower today.

Still, this I know.  There will be plenty of opportunity for practice.

Candace 

jet lag

I must be in a foreign country.  I don't know the language and I'm eating with the randomness of a time-warped tourist who doesn't care if it's time for breakfast or dinner because it's all the same, and as long as she gets sugar and caffeine somewhere in-between, she will keep on going.

Until she collapses, which is about now.

We're home.  So why does this home feel like a hospital?

Maybe because there's an IV pole in one corner, and our mini-fridge that usually houses my baking flours is filled with Rich's eight-day supply of antibiotics, and the visiting nurse comes in and wipes down our dining table with a potent sterilizer that kills every living thing and whose instructions, I read afterward, specify not to be contacted with food, and so I wipe it down while Rich gets his drip, and today I tell her don't you dare, and she says rubbing alcohol is just fine, no problem.

But there are lots of problems.

About the visiting nurses who instructed us in the use of his IV line, four-plus hours a day, and 

while helpful, Rich and I have been around hospitals long enough and are observant enough and Rich has experienced more than enough to know that that some of their procedures and instructions are wrong. 

About this hellish regimen, to be continued through mid-June.  Every marker since the surgery has indicated no staph infection.  And we can't get answers.  Shall I trust the revered medicine gods when they say they need to be aggressive with this further destruction of Rich's body, not to mention quality of life (mine, too) in these weeks before the aggressive chemotherapy begins?  

Of course not.  Trusting anyone or anything means we're kissing our assets good-bye -- reason, intelligence, experience, in-the-guts knowing, and becoming a drug-infused piece of meat.

This isn't life.  This isn't a good day.  I'm the Ugly American Tourist who wants to go home where the food is familiar and I understand everything.

Candace

anniversary dance

Wednesday is our anniversary, and we hope to be home. 

Thirty-one years.  

It has been a day.  Okay, maybe a week. 

Rich, the physicist, can surely explain these time confusions.

And why no amount of time will ever be enough.

Candace

 

nine-headed Hydra

Today was a great day.  Compared to yesterday, when we learned that Rich had a serious staph infection, and his veins couldn't hold the IV insertions, and we were wondering how many heads this monster had.

"Seven-headed Hydra," I said.  "Killed by Hercules?"

"Wasn't it Odysseus?" Rich asked.

I got the slayer right, but the number wrong.   Hydra had nine poisonous heads, and neither Rich nor I could remember how they were removed.  A magic sword, perhaps?

One head is sufficient.  Who needs more?  Slaying the chordoma is enough of a challenge.   If only we could find the magic sword...  

Right now, the most dangerous head is the staph infection, and from what we learned today it is amenable to antibiotics, and six weeks max -- maybe less -- should do it.  So today Rich had a PICC inserted in his shoulder, and he will have four hours a day tethered to the IV antibiotic drip, and this will postpone the possible chemo, but his veins will recover (temporarily assaulted by last chemo) and we hope to be going home by Tuesday, and his recovery from the surgery has been brilliant.

As for the magic sword:  Not one, but many, held in the hands of all who are reading this, all who have bathed us with their calls and letters and care.  

Pity Hydra.  She doesn't have a chance.

Candace

I think, I wait, I fast...

...with apologies to Herman Hesse's Siddhartha, these are the days of thinking, waiting, fasting, especially while Rich is in surgery number five.

Thinking about a cure?  Wish I could.  Last night, Rich received message from oncologist offering up a suggestion of a drug that has had success for one patient, in Germany.  The catch is that this experiment will cost $15,000-$20,000 for a month's supply.  Rich is priceless -- but this drug?

And I wait.  With Rich in pre-op, at 5:30 in the morning.  Surgeon is optimistic he can dig deep and not hurt Rich too much.  When Rich is wheeled off into Operating Room 21, I briskly walk to the elevators and down into the cafeteria where I have a breakfast of oatmeal and cinnamon raisin bagel with butter and try not to think what is happening to Rich.  

During previous surgeries, I would take this time for planning, for making lists.  Now I scoop the cereal with my left hand and hold the pen in my right but by the time the bowl is empty and the last pat of butter is scrapped clean -- nothing is on the page.

Satisfied, I put the blank pad and the pen back in my pack.  I think I've accomplished something, though not sure what.

And while over the next seven hours I will consume a latte and a tea and the lunch buffet and an oatmeal scone, I'm fasting.  From sleep, from eating (I'm just fueling), from anything other than this moment which is sucking out of me what I once called "life."

Siddhartha found his truth by a river.  Maybe mine, too (any coincidence Sloan Kettering is on the East River?)

I didn't remain with Rich long in post-op; I was allowed only ten minutes.

"I never saw a human being heal so well," says the surgeon, who has come to love this patient.

Surgery was a success.

"Now let's hope for some magic," he says.

How long before it grows back, I ask.

He doesn't say anything.

Three months, I suggest.

It's a real estate problem, he explains.  There's no room deep in the spine.  A millimeter or two, that's all that is needed to cause trouble.

We need to think of other possibilities.  Fast.  We can't wait.

Candace

 

killing dandelions

With less than 48 hours before leaving for New York, Rich has a list.  Start mulching, move hay, clean kitchen, iron, laundry, mow, pay bills, vacuum, new door handle...

All of this while I'm still eating breakfast.  Almost.  He's a flesh-and-blood WALL-E.  

Rich finds comfort in a list.

Meanwhile, I pretend, too.  Finishing a manuscript for a May 15 conference deadline.  Yoga.  Meditate.  Bake bread.  Talk with friends.

Then my neighbor appears outside my window, spraying poison on his dandelions.  

Fucking asshole.  

I explode.  Charge at him in my pajamas, and don't care at all that it's noon and this doesn't make a good impression on his neat, ordered, dead life (these are my work clothes, asshole!) 

Nothing changes.  He sprays.  I fantasize the dandelions rising at midnight, wrapping their hollow stems around his empty body...

I am grateful for him.  Without such as he, we would never stop pretending.

Next stop: Miracle House.

Candace