84 Spring Medicine Shield

Journaling comes in many forms.  Most people think of it as writing, yet those same people may not write.  Everyone journals.  It’s a matter of noticing how.  How do you connect with the Divine?  How do you hear direction, get ideas, feel inspired and fed?  Where do you think those ideas and positive emotions come from?

One form of journaling is artistic creations.  I have been working on my medicine shield.  I started it on the trip to the ocean.  It tells a story, one that is literal, and then one that is also deep and ongoing.  The finished shield will talk to me.  But it could talk to others and say totally different things.

This cedar ring (representative of the life giving, spiritual tree) is adorned with a piece of driftwood that represents the tree of life.  This has come up in so many meditations, the fluidity of the generations, how we bear the love and knowledge of our ancestors in our daily lives, but also how we carry it through to future generations.

Medicine shield with cedar ring and feathers.
Medicine Shield making as a form of journaling

Today I was trying to get ahead of the morning pain.  I was reciting the rosary in bed, as I stared at the ceiling.  I could see my Grandpa Plumb, kneeling in the pews, then his mother Grandma Mickey (Catherine Plumb).  And then I pondered all of the generations before.  I don’t know if the ones that came before Grandma Mickey were Catholic, if they said the prayers or attended a church, but they were in my thoughts and visions.

Then the future generations came to mind, not bound to a church, but definitely connected to a lineage.  What will come of the future, when today we wrestle with Covid 19, Black Lives Matter, and a full shift of the world as we know it.  When I glance over at the medicine shield, I am pondering the tree.  I want to add bead blossoms to the limbs.  I wonder what that will look like.  I know the journaling of the future generations will be in those glass flowers.

82 It’s Dark

Everything hurt so much after the doctor visit, that the next time to pack it just added to pain already happening. So, I’m back to constant Tylenol, back to waking up with hurt, and worst of all, I’m dealing with a mind that is obsessed with the idea of how many hours until I need to do it all again.

It’s dark. Actually the sun is rising and I can barely see the screen due to the focus the beams have on me. That is reassuring!

The incision wound needs to step it up a notch and start the closure process.  Apparently it’s just been hanging out, being itself for a month.  It’s a 3/4 inch hole at the surface, maybe 3 1/2 inches deep.  There is a repulsed, grossed out feeling I have when I work with it.  I try to explore whether it associates with my past experience with “packing a wound” back in the MRSA days, or if it’s a new experience of its own right.

Because it was not shifting, the surgeon decided to change the routine.  Because I can’t really tell what is happening when they are working on me, I make up stories from what I do see.  They might be fully false.  But what I think happened is that a set of tweezers was used inside the wound to measure the fluid behavior.  At any rate, the inner tissue is pissed off.  There isn’t a nicer way to say that.  Cell rage?  

My body has never loved being packed.  Packing is when some form of material is put into the open space to allow drainage, and healing the depth of the hole rather than the surface, avoiding infection.  Sometimes it’s nothing.  Usually my body is angry, and there is pain that radiates immensely for half a day.  I was packing the wound every other day.

Now, with a different form of packing material, it needs to be done twice a day.  Everything hurt so much after the doctor visit, that the next time to pack it just added to pain already happening.  So, I’m back to constant Tylenol, back to waking up with hurt, and worst of all, I’m dealing with a mind that is obsessed with the idea of how many hours until I need to do it all again.

black cat holding persons arm

The up side?  Sun beams blinding me as I type.  A cat lying literally across my left wrist (amazing that typing still happens)

The up side?  Sun beams blinding me as I type.  A cat lying literally across my left wrist (amazing that typing still happens).  Crows calling out, reminding me of spirit and that they are “there for me”. Breath.  Breath is always an upside, like the poem Amisha shared.

80. Packing A Wound

Is the infection like kryptonite, and the silver like a K-suit? Why don’t I know more about Superman?

My first medical surgery was the port placement.  The second unfolded as the emergent removal of my lower colon, related lymph system, appendix, and a Fallopian tube.  And a large colon mass.  That too.  DeeDee points out how strange this is, how strange to be facing these surgical firsts, when so many people around me are on their 5th, 7th, 10th surgeries of their lifetimes.  

Surgery is not a life goal for me.  If I dictated my future, I would never do it again.

Post surgery, I’ve been trekkin’ along like Wonder Woman.  Healing like a super hero.

When I went to the appointment, the nurse reminded me of things I don’t want to believe.  “You are vulnerable.  You are immune suppressed.  You need a lot of time to recover.  You will be coming in for post surgical visits for a long time. You are not a super hero.”  Harsh.  She really was NOT that harsh.  She just slipped the information in over time, in little snippets.  I collected them.  But those are counter to any affirmation I would create. 

The visit was for the ostomy, my new colon exit.  And it was for the zipper wound that starts at my belly button and slides down six inches.  The staples that held the surgical wounds came out.  Staple removal is not a pain level ten by any evaluation.  But it is not a two either.

Colostomy bag
Colostomy bag

What I did not expect was “packing the wound”.  Familiar to me from my MRSA experience long ago, when a wound is deep, it has to heal from the inside out.  That means that the exit area needs to stay open and drain.  They had hoped to avoid it.  But alas…

And so there are two spaces along the zipper that are open.  One is inside the belly button.  The other is about half way down the six inches.  I pull out a length of cotton tape.  It is infused with silver to protect me from infection.  Is the infection like kryptonite, and the silver like a K-suit?  Why don’t I know more about Superman?  Why did I have to look that up?

Once the tape is removed, I clean the wound with saline.  I scream just a little, or maybe sometimes it will be audible.  And then the packing goes back in.  Uncomfortable.  More than uncomfortable.  The nurses did it with the MRSA ordeal.  I now understand that there was no way to avoid the pain part, though my mind reeled at their audacity and lack of compassion.  

Now it is me, the one that inflicts pain on the self.  So confusing.  So disorienting.  And it hurts for a long time, not just in the process.  There is a lesson in this, about cutters, about PTSD, about mental illness, about physical realities.  I pray for healing, for all of the healing for the subcategories that ring through my experiences, and beg to be heard… I pray for universal listening, universal understanding, universal healing for all those that bring pain on to themselves as a form of balance.  God does not want anyone to experience any of this.  And yet, God does, because there is so much growth and understanding in it.

74. Medication

My body knows how to heal. The pain medication can be a friend, and then become a foe. It’s important that I watch for the moment. Then thank it, and let it go.

Today I started scatter scheduling my Tylenol.  I really do need to figure out what “control your pain” means, but then again, I don’t plan to continue playing the pain game.  If possible.  If divinely allowed.

I can take a narcotic.  I just don’t.  I haven’t seen a narcotic pill do anything for me.  It doesn’t mean there is not some mental or physical reaction.  I haven’t taken enough of them in my home life to even know.  Three pills, four pills, altogether, something like that.  And no noticeable change with those.  But there is no science in four pills.

I have been maxing out the Tylenol.  This morning, I went to one 650 mg, from two.  It’s not that I am intentionally dropping down from 1300 mg every eight hours, but that I am going to start an overlap.  When I did the last four hours with only half, I can take the second pill now.  It will span eight hours.  If pain rises, I can always take the second, but the intention is go four hours or more, and keep that cycle.  

It takes away the rise and fall of relief.  And if it is like last time, it also is the beginning of the end of medication.  The second pills spreads the time, meaning I will often be taking it only an hour from being uncovered.  And then I will bring the dosage down.  And finally, I will let it go.  When it’s time.  No rush.  No guilt.  

My body knows how to heal.  The pain medication can be a friend, and then become a foe.  It’s important that I watch for the moment.  Then thank it, and let it go.

69. Sneeze

A cough, a sneeze, a cat on my lap. They seem perilous, like the biggest risk that could be taken.

I sneezed today.  Twice.  Twice in a row!

My insides did NOT burst outside.  I smiled at the accomplishment.  Normal things are not normal.   A cough, a sneeze, a cat on my lap.  They seem perilous, like the biggest risk that could be taken.  

Living on the edge.

67. Further Assimilation

The body sends out a liquid response to healing, and at first, it is a large quantity, and so it is helped to the outside by a long flexible straw that goes into a four inch collection bubble pinned to the gown. What a fashion statement!

If I had the where with all, if only my body would have acted when my mind told it back then (damn paralysis), you would have a picture of my next stage assimilation into the Borg!   I am not really a Star Trek fan, but it’s the analogy of a lifetime.

The port is always in my chest, but it is rarely “accessed”.  Accessed means that there is a plug in the plug in.  A small tube is there, and blood can be drawn, or IV fluids linked to the line.  Before the surgery, the port was accessed, tube one.

I had IV’s, yep, not one, two.  Why?  Someone knows, but it is not me.  The port really should have done the full trick.  But I had an IV on my right arm in the bend.  They are always in the worst place.  Why the bend, where you can feel the needle with every motion?  I had an IV once that was mid arm, no pinching, no long term resentment from my hand.  Why not there?

Left hand, another IV.  Hand. Oh dear.  The hole is a scab about 3/16 of an inch in size.  My hand is not going to forget that one soon.  

Oxygen happened.  The tubes aren’t invasive, but they do come up to the nostrils and deliver that “wired in look”.

Then going lower, the first couple of days I didn’t need to get out of bed to use the toilet.  That is an incredible blessing.  Another tube, from my urethra to the box.

And a drain.  The main wound had a drain.  The body sends out a liquid response to healing, and at first, it is a large quantity, and so it is helped to the outside by a long flexible straw that goes into a four inch collection bubble pinned to the gown.  What a fashion statement!  When that came out, the nurse asked if I wanted to see.  There was at least a foot of tube that had been working inside.  Incredible.  And once out, the skin closed, and the reality of the work of the body went back into hiding. That is as much Borg as I ever want to be. Assimilated.  Done.

66. Pain Interpretation

Do you know what hurts most? Medical tape. Ripping off the tape. Swear words spoken in every language stream across consciousness when the tape comes off.

The system in the body that interprets pain is insane, crazy, and just makes no sense.  I don’t have human control.  Jack Schwarz had human control.  He could stop the bleeding.  Control the pain.  On television, they drove a sail needle (like a thick nail) through his flesh.  Not a flinch, not a drop of blood.

My receptors are off their rockers, dancing with the Minnions, way past Looney Tunes.  If I was doing another half century on this ride, I might explore more. You can do it for me.  You can have the skills that Jack had.  They are inside the Universal capability.

For me, I will observe.  Do you know what hurts most?  Medical tape.  Ripping off the tape.  Swear words spoken in every language stream across consciousness when the tape comes off.  

Adhesive blisters.  I have a couple of blisters that formed under the tape around my port.  The port is that Borg device under the skin on my chest.  When I stepped in the door, home for the first time, they burned and throbbed.  What about the four inch zipper in my lower abdomen?  Nothing.

Blood draws and IV placement in the back of the hands.  The worst.  And my hands hold memory.  They will complain for months.  They were still nagging about the last time in the hospital.  Sharing their memories.  Causing echo pain.  And today the new bruises span from middle finger to pinkie, purple and sad.  Sigh.  There will be a lot of apologies and discussions with the hands.  For the record, I did ask to protect them.  I did try.

And the new colon opening in my upper left?  Quiet.

62. Socks

But a hospital has rules, rules made up by a horrible sock company! They try to hide that. They imply that it is safety. Poppycock and rot.

You can get around this one.  It’s okay to wear socks and shoes from home.  I did that exclusively on my last week’s stay at the Overlake inn.

But a hospital has rules, rules made up by a horrible sock company!  They try to hide that.  They imply that it is safety.  Poppycock and rot.

The socks have little nubs all over them.  They are made of a material that has no connection to nature, and might be recycled plastic milk jugs, which I could actually get behind.  Even the colors are barely meeting a spectrum, yellow, gray?  Not really yellow.  Not committed to gray.

The atrocities do cover your feet.  There is a light barrier against the cold.  And, I did not slip or fall.  Dilemma averted.  I went through three pair while I was there, forever in the landfill.  Could there be a limited supply?  If so, I have diminished the possibility of sock torture for future generations.

58. Heading to the Hospital, The Sequel

A snakey path.  Last Saturday, as I reflected on my ideal journey through treacherous waters, I was pondering the pain that was spreading through my abdomen.  I had quickly recovered from my first week in the hospital in March, had come through three cycles of chemotherapy, and was well.  No one would expect how well.  Amazingly well.

But Saturday felt different.  I woke up with nagging suspicion and pain to match.  A call to the consulting nurse sent us for a midday bladder check.  And after the group zoom chat, I called for results.  Negative.  Positive would have been a more welcome word.

With that diagnosis came the traditional sounds of “Manage your pain”.  I can imagine generations of ancestors silently screaming with that directive.  I was trying.  I had never used the narcotics in my collection.  I tried one type, switched to the other at the next time window.  No change, no relief.

I called the consulting nurse line again.  “I don’t know how to manage my pain.”  How many people struggle with this every day of their lives?  I have so much compassion.

This time, there was far more concern.  “Go directly to Urgent Care.”  

I packed.  I packed the bags for a hospital stay, my computer, my journal, cell phone charger, changes of clothes, hairbrush, deodorant.  There was no point in making Kwami and Nyasha dig for what I wanted.  Resignation.  Sigh.

57. Realization

I wouldn’t choose pain for anyone, especially not this lovely body that has served me with grace for half a century. Even more, I wouldn’t choose it for you, for anyone who had to watch and suffer.

If I was to stay in this pain state, if it were to continue as a constant for ten hours, twenty four, a week, I realized that to be worse than death.  

It felt like an eternity.  It was probably six hours max.  I sooooo want to exaggerate that number, and that number could be an exaggeration.

I rethought the Death with Dignity story.  What if.  What if the promise of my next moment and then the next LOOKED LIKE THAT!  

While I have rational brain cells, I wouldn’t choose pain for anyone, especially not this lovely body that has served me with grace for half a century.  Even more, I wouldn’t choose it for you, for anyone who had to watch and suffer.

It made the choice so clear, and the need so obvious.  The option for Death with Dignity is a gift.

Dr. Wilfong sat with me for a long time before I left the hospital.  I told a version of this story, and he had heard my plea from our first meeting many weeks ago.  Six months, the process and paperwork can start when you have six months left to live.

What if another emergency surgery popped up?  What if I was in a hospital bed, day after day, gray and lifeless and incapable of a smile, a wave at the person in the hall creeping by?  Beyond dead, yet alive.

Dr. Wilfong spoke hope: If I were to discontinue treatment, if I did not pursue chemo, I would live less than six months.  The paperwork can begin.  And I will continue the path of treatment, continue the process that keeps me alive.  Win win.  And a sigh of relief that crosses the physical realm.  I see the smile of God.