Better, and the need for shoulders on any vacation

I seem to be suffering from double vision, so if I jump from line to line or mess up some simple grammatical thing, please forgive me.  It is Chip’s fault.  He keeps trying to help me, which is not helping. 

I have never been down so far as I was a week or two ago; especially after the last months of down-ness that preceded it.  I just didn’t understand what was happening!  After starting four days of oxycodone for worsening pain, I had a two day bout of nausea and vomiting that I  thought was brought upon by some bad beef.  Indeed, as we made the switch to MS Contin from the short acting drug, I still had little nausea and no meds for nausea, and hadn’t really been bothered until the next weekend brought on the same nausea and vomiting after some seriously weird dreams and scary hallucinations.  I finally ended up in the ER for dehydration (we McKinleys just are terrible drinkers….really).  So after getting lots of IV fluds and too little pain meds, I went home terribly behind on drugs, in pain, and I stayed down as we maneuvered off the MS Contin and onto the blessed methadone. 

My symptoms, unfortunately, are mostly neurologic.  Probably the result of cancer cells coursing down and around my meningeal structures, so you never know what you’ll get.  I was driving to see Will play lacrosse (I may have mentioned this previousy) when I suddenly developed a Horner’s syndrome of my left eye.  Multiple meetings, scans, etc revealed no evident source, but as of a week ago, I now have double vision, which I did not have previously.    But I digress.

So finally, my oncologist suggested that perhaps we were not getting places with all these scans, my counts were remaining too low to get any further chemo, and we were in a new place that “she never hoped to get to with me”.  Me either, that’s for sure.  I love this woman; we have been working together for seventeen years on this cancer.  When she says things, I listen because she is invariably right.  I didn’t want to listen this time.  Tears didn’t seem to change what was happening either.  Neither did the love and support I have from that entire group enterprise from scheduler to LPN to RN to doc.  They all hug and care and can’t change a thing at the point I’ve found myself.  She says it is time to activate hospice, and I know she’s right, and so we do.  And guess what? They are wonderful, but our timing is a bit off, and their wonderfulness is still to be learned.

Then the wonderful line up of friends—artists, docs, med school people, friends, students, etc—kick in, and I’m still feeling pretty awful so lots of shots are fired across my bow and people, including me, get scared. 

But then hospice really kicks in.  They assess me on a Friday, the weekend nurse comes on Saturday an ups the pain meds a lot suggesting that I’m thinking about them incorrectly.  Taking the appropriate amount of drug may actually decrease the nausea and vomiting and get me up out of bed, less exhausted and feeling better.  Ok, you just have to trust.  She was so entirely right.  I was 85% better the next morning with little pain and a smile.  OMG, doctors are the worst patients, or at least ones that haven’t been doing too much medicine lately are!

So this is a call out to all you loved ones.  I am much improved.  I am up, learning to follow a bowel regimen (Ok, this I don’t like much), laughing with kids who have also been emotionally dragged through the wringer for the last three days that they have been home from college, and eating real food like chicken, soup, smoothies, and as many fudgcicles as possible (anyone making a disparaging remark about fudgcicles deserves to have to take a bowel regimen.  I mean it.).

I could talk even longer on the amazing strength and vulnerability of these kids.  But they deserve some privacy.  I am, as usual, in awe of them.  That much I’ll say.

So here’s to some more time to eat fudgcicles, to smell freshly cut grass, to hear the rain and the cardinals in the back yard.  It is all glorious from my perspective.  Love to you all.  How about a little poetry?  I much prefer world #2; let’s live this way.

The Vacation  (Wendell Berry)

Once there was a man who filmed his vacation.

He went flying down the river in his boat

with his video camera to his eye, making

a moving picture of the moving river

upon which his sleek boat moved swiftly

toward the end of his vacation. He showed

his vacation to his camera, which pictured it,

preserving it forever: the river, the trees,

the sky, the light, the bow of his rushing boat

behind which he stood with his camera

preserving his vacation even as he was having it

so that after he had had it he would still

have it. It would be there. With a flick

of a switch, there it would be. But he

would not be in it. He would never be in it.

Shoulders (Naomi Shihab Nye)

A man crosses the street in rain,

stepping gently, looking two times north and south,

because his son is asleep on his shoulder.

No car must splash him.

No car drive too near to his shadow.

This man carries the world's most sensitive cargo

but he's not marked.

Nowhere does his jacket say FRAGILE,

HANDLE WITH CARE.

His ear fills up with breathing.

He hears the hum of a boy's dream

deep inside him.

We're not going to be able

to live in this world

if we're not willing to do what he's doing

with one another.

The road will only be wide.

The rain will never stop falling.