April 19th 2003 & 2016

April 19th 2003

My Cuzzin visits today and brings me one of her original beaded necklaces.  I immediately put it on.  It is a healing necklace.  I am not taking it off.  The center is a Chinese symbol of life.  There are other healing stones and there are beads from something my dad made my mom at their wedding.  Special Blessing,   Sacred and Healing.  I’ll take it.  I need all three for today, a good luck charm or amulet.

Today is Holy Saturday.  Tomorrow is Easter Sunday.  It is the weekend here at “the home,” which means no treatment for me.  The treatment I need  and can get, is from my Lola.  So, I am going home today.  I am going home AMA, against the doctor’s say so.  They want me to stay here to keep the DPNS going.  They want me here to monitor the feedings, fluids and the medication.  They want to make sure I am stable.  But they don’t have to live here.  They aren’t here 24/7.  They don’t know what it is like.  And they don’t have to.  But I do.  And I need to leave.

They are letting me go, but there are some conditions.

  1. I have to start the DPNS back at my hospital Monday.  Yippee!  I wanted to do it with Carole anyway.  That condition is fine.  I cannot drive yet, so I have to have rides.  I hope Mom will be ok with that.  I know I am a burden, but it won’t be for long.  They say I can drive in about two more weeks.  CHECK
  2. I have to be responsible for the feedings.  I can increase the rate of the drip of the food.  But I still have to be attached to the feeding machine the majority of the day, including sleeping etc.  Not much time off for good behavior.  (I really like how much weight I am losing.  And I am not hungry.  But they are not amused with this information.)  I am told I can disconnect for taking Lola out for doing her business and doctor’s appts.  I will get a delivery from a medical supply company to my house with cases of the food, as needed. CHECKDoc1
  3. I have to crush my medicines into powder and put them into the fluids flush.  Okay.  And I have to take the Coumadin, Colase (to make the bowels work.  Evidently bowels aren’t too excited by my present diet)  and other meds once a day.  And the fluids are to be pushed at 4pm and 8am.  CHECK
  4. I have set up the Visiting Nurse to come check my INR (translation:  How fast is my blood running?  We want the blood thin and running fast through the arteries.  We don’t want it too thick so that it clogs and can’t get through the site where it is healing in my brain stem.  And we don’t want the blood running too thin and quick.  I am not sure why or what damage that would do.)  and BP etc. I am totally ok doing that.  It will be nice to have the nurse come check on me.  CHECK
  5. I have to have a portable suction machine ordered and received by me, before I leave “the home.”  Right now, the suction is hardwired to the wall.  The receiving cup is emptied as needed by the staff.  The tube is used as I need, often.  The tube is hardwired for power to the wall.  (When I go for a walk here, I take a bunch of tissues and spit the goop into them. Romantic?  No, but really effective.  And super necessary) I guess I am going to need a portable suction machine with a big old rechargeable battery pack. I can keep it plugged into the wall when I am being a good robotic patient hooked up to all my machines.  And when I am mobile, I carry this thing around. CHECK.  The machine arrived.  It is about a foot cube in size and maybe five pounds in weight.  The machine has a removable tank for the gunk.  There is a hose attached to the tank with the probe sucky thing on the end.  And there is a nice black shoulder bag to carry it in.  Styling.  (I have to order the supplies like sucky bits and I have to agree to clean out the gungy tank every day.)Doc2
  6. I have to set up elevated sleeping.  (Funnah medical Peeps, like I sleep. Really?)  At my hospital and “the home,” I have one of those great adjustable beds.  I put the head end up high all the time.  They say I can lower it quite a bit at bed time.  I guess I only need a 45 degree elevation of my head to prevent aspiration in the event of excess secretions during the night. Right…  That comforting thought is not sufficient in my present reality.  I keep the head of the bed right up.  The foot of the bed, I love to play with that.  It is a fun robotic indulgence that I enjoy.  So at home, I need to elevate my head in bed.  My HMO will gladly pay for a fully electric fun medical bed for my apartment, to the tune of about a grand.  I have questions about this.

-I live on the second floor of an older two family.  Would the big bed make it up the turns of the stairwell to get to my apt.?

-Would the bed make it in the doorways of the apartment?

-Where would my bed go while I have this bed?

These persnickety details make me say, no thanks to the bed.  The other option is a Wedge Shaped foam pillow that I can get at a medical supply place for $33.33.  CHECK.  Their concerns dealt with and I am good with the choice too.  Guess what, My HMO won’t cover the pillow that costs $33.33.  HA!  This is ludicrous.  I don’t understand the logic.  I don’t have to.  I pay for the pillow.Doc3

  1. And, I have to have “a significant bowel movement” before I can leave.  Bottom line for all concerned, this condition is non-negotiable. CHECK. Not so fast, Rachel.  The Colase is not enough, today.  And I have a mission.  Time is Ticking.  I gotta go, so I gotta go.  Desperate times call for desperate measures.  Bring me the suppository.  (Gross, but seriously, this is the only thing standing between me and my angel, Lola.  And isn’t what so much of life boils down to?  What we put in and what comes out.)  The “sample is sufficient,” they say.  And I am free to go.



April 19th 2016

On Patriot’s Day, every year that I could, I would drive down to the Cape.  When my Gramma was alive there were two reasons for the drive.  But since 1995, My Cuzzin was always the primary destination. She would feed me the most amazing yummies.  I got to play with her pups and kitties.  Her beads and new crafting opportunities were there for me to try.  The woods beckoned for walkies.  The kayaks were there for trips to see and sea.  Her great friends were there to laugh with.  Shops are fun, and Cuzzin knows the best.  Tattoos could happen together.  P-town had our whale watches and Ciro’s Restaurant, and shopping.  And even now with the Cuzzin moved down south to an equally gorgeous nest, there is the ocean that I need.   The ocean and its remarkable healing properties.  For me, in every season of the year, the ocean is the answer. All it takes is two minutes of the eternally consistent sound of the waves, massaging sand in my toes, refreshing waves on my feet, picking up seashells, searching for beach glass and the salty smell.  And I am well.  The best medicine.

And this year, I need that medicine like always. But now, I get to share it with “the mens.”  This year we are making the Patriot’s Day trip together.  And we, our family together,  is the ultimate family destination.  As we get into the car, I start to breathe better.  I know the road we take in every season.  There is such comfort in the routine of the known.  I know the ocean, it never disappoints.  The radio announces a car accident causing a big back up on our route, Tim alters the plans, and rightly so.  We are going to go through Providence instead.  It’s a great alternative route for us.  But it is not “the route.”  I don’t know it, the markers, or the stops along the way.  Anxiety in me rises.

And then I remember my goal for vacation.  Just three days ago, I had committed myself to the idea and then, my family, we had set a course together of a vacation of shared goals and mutual decision making teamwork. (My default setting of isolation, masked in the noble characteristic of independence and all rooted in my fear, picked a tough road with such a communal goal.) But I know I am happier living my life “the mens.”  I know I am safe with them.  And I know that I am happiest when I know they are happy too.

Tim knows the road well and we made good time.  I sat in the passenger seat, definitely doing my share of backseat driving to calm my nerves.  Of course we got there.  And of course the trip was a good one.  But I was off the beam.  And I knew the problem was not with the road, but with me.  Along the miles I had an idea.  Tim and Jason had not been to one of my favorite places on earth.  And I knew they’d love it.  Tim loves to try new things with us anyway.  CHECK.  Jason loves adventures, mazes, unknown twists and turns.  CHECK.  I know I love this spot. CHECK.  So, I proposed the Knob as our first stop of the day, without really any other details or explanation. “The mens” were intrigued and agreed.  I remembered it to be pretty soon off the bridge.  But it was rather farther down.  It is not in Falmouth, but Woods Hole.  After resisting Google’s assistance and instead directing abrupt stops, turns and lane changes to the driver, Tim,  for a few minutes, I gave in and got help.  Oh yeah, we are headed for Quisset Harbor.  It is just beyond.

So, off the main road, down a winding curvy narrow lane, around the ocean inlet to the end where the gate is, we parked.  We walked into the woods, uphill slightly.   A sign says the area is now a protected birding area.  Good.  The woods open and the ocean is on left and right.  Forward we go, following a natural stone and sand bridge to an island like promontory.  Up to the top of the hill, and then the ocean is all around us.Knob  Every part of the trip is mysterious and surprising for Tim and Jason.  And for me, I am giggling inside, loving every beautiful step of the present trip to the Knob, remembering and appreciating the history I have here with ocean, trees, birds and Cuzzin, and so psyched at the obviously awesome impression this adventure is having on Tim and Jason.  How blessed I am.  CHECK.


One thought on “April 19th 2003 & 2016”

  1. I wanna Go…glad you took that pic so I can see The knob, and himself enjoying it..I totally identify with the NEED to be by the ocean, if only for a few splendid moments…..Thanks for helping me “go” there this morning!

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