I'm back in the saddle again

Last night I talked to Lynn.  She got yesterday’s blog in verbal form--unabridged, far more expletives and tears.  Just as we’re cleaning up the debris she gets an incoming call from Dr Peiffer and asks if she can call me back.  Hell Yes.

Enough time goes by that I’m half expecting cars to start pulling into my driveway.  Then I remember that the way my house sits makes it nearly impossible for anyone to find it at night.  Enough time has gone by that when I hear Lynn’s ringtone on my phone (theme from NCIS) I’m ready.

“Yes boss.”

“You there?”

“I’m here.”

“You okay?”

“I’m okay.”

“Hold on.  We’re going to have a three-way.”

Long pause and then I hear Lynn say,  “You there, Kelli?”

The three of us talked for way more than an hour.  Lynn, Dr. Peiffer and I.  We talked, we cried, and we made a plan.  

This is where I fear this blog may have reached the point of unbelievability.  I’m on the phone for nearly two hours with technically-my-boss and Rich and my family doctor.? On a Friday night?  Having a three-way?

Skip to the chase.

Given the bus ride to Looney Town, all the medical information Dr Peiffer has access to (which is everything), and what we all three know Rich wants, these two wonderful women give me the spiritual permission to fulfill Rich’s wishes.  It’s time to stop.  How many of you can appreciate the skill set required to deal with an Irish woman’s guilt?  (Other than Rob Pyett)

We’re all on the same page, in agreement and ready.  Now that Rich has reached a point of hallucinations and confusion, I can now be the one who speaks for him.  I will go in Saturday to see him, try to explain things to him, give him his permission to go, assure him I will be okay.  Timing my visit so that when Dr Peiffer comes in around noon, she can step up and start the ball rolling for my now legally right to make decisions that will carry out the wishes he has been insisting on for three-plus-years.

Some commutes to his bedside are frustratingly slow;  some are frightening fast.  This morning’s commute  was just surreal.  I have rehearsed for hours, all the way down the hallway to his room.  I’m ready.  I have cried buckets and puked three times.  I can do this.

I walk into his room, and low and behold, Rich is Rich again. Alert and oriented x 3 and ready to hit the road running.  Despite  Dr Peiffer’s counsel from the night before I was not prepared for this.  Shit, shit, shit, regroup.

He wants to continue radiation and chemo.  Kick the infection and get home to his garden and the cats and me.  In that order.  We talk enough that I realize he is totally capable of make his own decisions.  I’m no lawyer, but I watch enough “Law and Order” to know that he’s good to go.    

One day it’s the bus to visit the Hedge Hog People; the next day I’m getting strapped into the roller coaster.  

I give up and give in and crawl into bed beside him while he drifts off.  I watch the second hand on the clock and count his sleeping respirations.  36/minute.  He’s on oxygen now.  It’s like cuddling a furnace, but his temp is normal.  I’m miserably warm, I feel spasms starting in my neck and hip from the awkward position I have to assume to navigate the hospital bed, the IV lines and his swollen body.   I’m struggling to stay awake.  It’s almost noon.

I hear the soft flutter of pages being turned just outside his doorway.  Some moments later Dr Peiffer peers in.  She pulls up a chair, sits down and talks to him.  She starts with what she’s expecting from yesterday, quickly adjusting to what presents today  and proceeds with what I vaguely remember as Plan B.  Rich is still calling the shots.  He wants to continue the radiation and then he wants to come home.

Dr Peiffer is amazing with him.   She listens.  Really listens.   Then she gives him a beautifully wrapped assessment.  She explains each one of his options and the expected prognosis of each choice.  Repeatedly assuring him that he is fully in charge of how this goes, and his choices should not be made on a desire to please anyone but himself. She absolutely guarantees his comfort.  I can feel Rich’s relief and comfort.

Without hesitation he tells her wants to continue radiation and come home.

She agrees to his wishes and then suggests that we have Palliative Care people come in to help set that up.  She explains it all for him and sets everything before him like a lovely tray of tea cakes and the choice is his.  I’m trying to brace myself for what may come.  He is now, rightfully, directing his care down the very road he has made me promise for three years that I would save him from.

Dr Peiffer did her version of the dance with the doctors--she’s got  WAY better toe shoes than mine.  In my own pathetic experience of the doctor hierarchy I still understood the mine field she maneuvered to accomplish what was in both Rich’s and my best interest.  She made cell calls, chased down doctors in hallways, nearly jived and shucked in order to get everyone on board.  I hope she knows that I know how far out she crawled on limbs.

Then she took me  and Lynn to lunch.  Seriously.  Has this blog not reached the point of unbelievability?!?!?

Rich is on pain meds now.  The pain meds that Dr Peiffer adjusted and ordered for his comfort.   He’s on pain meds because now he’s asking for them.  He’s asking for them because what Dr Peiffer ordered actually works for him.

I sit beside him and hold his hand, silently waiting for whatever he wants to say.  Selfishly I hope that he wants to give his precious, struggled breaths to words that I will treasure in my heart until I come to join him.  He doesn’t.   He gives me detailed instructions on the banking, bill-paying, insurance, social security minefield that lays before me.  Repeatedly.  Ad nauseum. 

Dude!  How do you think I survived the 39 years before I met you?!?!  

 He talks about his family--who to trust and who to protect myself from.  (No worries, I’m straight)   He talks about friends-- whom he really needs to say good-bye to; whom he wants me to send a card to.   He talks about each special person in his life and what he would like to leave to each of them.    Some selections are easy; some he worries about. He wants to make sure that every special possession of his goes to the right person.   His wishes for his “funeral” services have changed three times in the last four days.  

I don’t have to write it down.  As he talks I can finish his sentences.  He goes on as long as he can.  Again.  Always staring at the ceiling as he talks.    He holds my hand.  He asks me to pour him another glass of water.  

People tell me I have to let him do this--it’s part of the dying process.  Well, duh.  I’ve been doing this for three fucking years.  I started doing this the day after diagnosis, and I have the attorney who drew up the paperwork to vouch for that.   I’ve done it so well and so long I was actually thinking it had been done enough that we would reach this point of just the two of us.  When will I ever learn?

People tell me he focuses on these things because he wants to make me safe.  Really?!  I’m having a hard time reconciling how 27 repetative directives on the gifting of his favorite putter is going to make me safe.  

People tell me he’s focusing on all that is unreconciled in his life.   He’s not focusing on me because he feels so safe with me.   

Oh.  Thanks.

What people say is true.  It’s all true. I know they’re right and I know it’s the truth.

The truth is not always comforting.

I’m shifting gears.  Again.  Can’t hardly believe my transmission ain’t shot to hell.

Many times throughout these three years I’ve had to remind Rich that “I can fight everyone but you.  I can rescue you from everyone but you.”

The same conversation comes to an end.  The nurse comes to give him IV dilaudid.   Good stuff.  She asks him how much he wants.  He wants the full dose.    He tells her about his garden and all the work we’ve done on the house together.  She pushes the dilaudid.  My window of hope closes.  In a few minutes he’ll be gone from me again.  

Tomorrow is another day.    Things will be different.  They’ll still be shitty, but it will be a different shitty.

Let's go visit the Hedge Hog People!

I was wide awake at 2;30 this morning.  Too late to take a sleep aid; too early to get up.  You can only work so hard at falling asleep before you have to give up the fight.

On the positive side I got to the hospital by 6:30.  The night nurse was doing Rich’s morning blood draw, and it is just painful to watch anyone try to get blood from this man.  His pic line is too plugged up to give a return.  She managed to get it out of his hand, but it was the longest, slowest blood draw I’ve ever witnessed.  

Two attempts and three hours of “cath flow” finally worked and by 09:00 the day nurse was able to get a blood return.  Holy Crap those two nurses earned a full day’s pay in thirty minutes. They’ve increased his dextrose IV to 70%.  I say let’s just hang a bottle of Karo corn syrup and  give the insurance company a break on billing.

The first twenty minutes I was there I thought Rich was just tired.  He was unaware of the needle sticks and blood draws.  Then he started talking after the nurse left and I quickly realized we were on the bus to visit the Hedge Hog People.  If I didn’t know better, I’d swear he’d just downed a six-pack, OR, someone had accidentally given him a Reglan.  I didn’t smell beer on his breath, and the nurses confirmed for me that Reglan is on his allergy list.  

Dr McGee came in and seemed oblivious to Rich’s slurred speech and mild confusion.  He probably assumed as I had that the man was just exhausted.  And let us never forget how Rich will rally for his doctors.  Rich asked him about his golf game and Dr McGee was wonderful in relating yesterday’s double bogey, bogey, and double bogey.  He told him how the greens were running at Chippewa.  Rich was happy.  

Then Rich asked him to restart the chemotherapy and Dr McGee told him he had ordered it.

BACK THE BUS UP, PEOPLE.

Now the bitch (me) has to explain why that’s not a good idea.  Rich wants to come home, and in order for him to come home I’m going to need the kind of help that requires Rich is no longer being treated other than palliatively.  Work with me here, dude.  On the fly I managed to get us back on track without using the word “hospice” in Rich’s presence.  Dr McGee agreed that we’d wait to see “how all of this goes” before we restart chemo and Rich nodded agreement.  

Maybe Dr McGee just has to agree to whatever Rich asks for and is trusting me to keep the ship on course.  Maybe.  I don’t know.  The only time I can talk to any of them is at Rich’s bedside so I’m not sure what they’re really thinking.

As it turned out, my gut wrenching attempts to dance around the “hospice” word was a wasted effort.  Rich had watched us intently as we spoke and didn’t remember a word.  Five minutes after Dr McGee left the room, Rich said “I wonder if Dr McGee is coming in today.”

Rich drifted in and out of sleep.  As he lay there dozing, he kept reaching up to the ceiling like he was trying to snag butterflies.  Then he’d mumble a bit.  Then he’d wake up and smile “Hi, pupshn, I didn’t know you were here.”   He looks around like a newborn seeing the world for the first time.  He tells me he saved a section of the newspaper that gives listings of where all the Farmers’ Markets will be this summer.  When he gets out of here he wants to go the Farmers’ Markets, long pause, and he can’t wait to get out on the golf course, long pause as he searches the walls like he’s reading hidden messages.  I agree with everything he says

We had the same conversation several times between his naps.  

Then the infectious disease doctor came in.  It’s like being visited by the energizer bunny without Pink.  He asked Rich if he had any nausea/vomiting and Rich said no.  I had to tell him that Rich has thrown up three times since yesterday.  While the doctor is buzzing about Rich I try to tell him that we’ve got some mental status change going on.  At one point he might have nodded in my general direction but it happened too fast for me to register it.

Then he asked Rich, “Any fevers?”

“Nope” Rich smiles proudly.   Okay that part was true.  Now I’m wondering why the nurses even bother charting if the doctors’ information comes from the soon to be Mayor of the Hedge Hog People.   I then try to bring this doctor up to speed because he wasn’t on the last trip to Looney Town two years ago.  If you’re new to the party, I’m going to cut you some slack.  I’m telling him that Rich doesn’t run a fever, save briefly early on, and then…”    I just shut the fuck up, because either this guy isn’t listening or he has a PhD in multi-tasking at a speed that leaves me chewing the bus’ dust.   He’s nodding, ripping off the paper gown, and I think there was a flash of hand-shaking and he was gone.

Show over, Rich doses off.  I watch him.  He reaches up like he’s trying to hug someone and he’s smiling.  Some mumbling.  Then his arms are up in the air again and he’s smiling and I can only guess he’s conducting an orchestra.  A little while later he wakes up, surprised to see me, and seems fully alert.  He tells me that someone just came and kissed him on the temple and he hopes I’m not angry about that.  Then he’s gone again.  Yesterday he was fully alert and pleasantly relating his last wishes to me.   

It never fails.  Three seconds before I’m destined to self-actualize, Lynn calls me.  

I don’t mind being in Hell.  I’m used to it now; I’m getting fairly good at decorating my room there.  And Buddy told me they serve marguerites in Hell.  Still, it’s better to have someone to sip them with you.

We talked for awhile.  I’m lost in the sludge of trying to be cooperative with his doctors and being Rich’s advocate.  I’m tired.  I’m torn and confused.  I want to crawl into bed beside him and enjoy the butterflies floating above the orchestra.  I’ve told everyone that he’s not himself.  They smile and nod.  Lynn brings me back to center.

I’m trying not to get swallowed in anger and frustration, but here’s the thing….

I recently bought a Little Giant Ladder so that I can take on more of the home maintenance care and Rich’s old ladder scares me to death.  The ladder came with an instruction book AND a DVD.    Do you see where I’m going with this?    I need some instruction here, people.  What are we doing?  What’s the plan?  If you’re all just responding to him in a way that calms him, that’s great.  Just bring me on board.  What’s the price of a clue, because I’ve got cash, credit cards and a stack of Monopoly money right there in my purse.

Two minutes after I hang up with Lynn the hospitalist (Dr in Charge) comes in.  He does his thing, I wait.  When The Question comes, I’m ready.  I calmly explain (in brief) what I have witnessed over the past six hours.  I then explain (because he is also new to the party) how Rich deals with infection.  He’s not going to give you the proper symptoms to correlate with the real problems so I need to know that you hear what I’m telling you.  He briefly runs a fever, then three days later he’s conducting orchestras and planning his campaign to be mayor of Hedge Hog Land.

It went well.  Then he answers my next question with the assurance that I’m not going to get 30 minute notice of discharge and things will all be arranged.  Right now they’re trying to deal with the infection in his right lung.  He gives lawyer directed doctor speak that translates in my head as….”we’re fighting this hard, but it’s really bad.”  Rich is not going anywhere like this.

Rich occasionally interjects in the conversation in a manner that suggests sleepy confusion.  I’m starting to doubt my own sanity.  

I’m the only one on the Bus.  Staff walks in, Rich pulls the bus over, gets out and politely gives them directions.  I watch helplessly from my tear streaked window on the bus.  Staff leaves, Rich climbs back into the driver’s seat and off again we go to visit the Hedge Hog People.

Rich is now exhausted and I’m suspecting that he’ll sleep better if I’m not there.  They’ll be coming to get him soon for another radiation so I feel like it’s time to leave for the day.    Before another nurse comes in to attempt an arduous blood draw and I offer to open all the veins on my left wrist for them.

I drive home telling myself that tomorrow will be different.  It will still be shitty, but it will be a Different shitty.

Am i missing something here?

I feel like I’m in a foreign country now.  And what would be the major hurdle?  That’s right…communication.  Everyone is talking, and I’m understanding the words, but when I put everyone’s words all together I get a slurpy mess and a sharp pain in the back of my neck.

Rich and I have talked and we’ve agreed that the fight is over.  We’re at peace.  We made a pact that from here on out we’re going to be totally open and united with each other.  No more silences sprouting from the fear of hurting the other.  No more apologizing.  He’s not going to apologize anymore for having cancer and “Putting you through this”.  I’m not going to apologize anymore for failing him.  We’re going to take this last path with joy and love and gratitude for all that we’ve been given and accomplished.

Then a doctor walks in.  (I’ll try not to be redundant here, but I only touched on it in last post and I’ve got three years of this under my expanding belt).  Some of the doctors are fairly new to us and they’re easy.  I just ignore them.  They’re clearly not vested in Rich and just doing their best to do a good job.  They talk like machine guns firing words that are sugar coated bullets.  I play a game in my head where I watch the second hand on the clock, running a secret contest to see which of them can get out of the room the fastest after delivering the most information with the most positive spin.  I give bonus points if they pause long enough to pretend like they’re listening.  No bonus points yet.  I sit silently during these encounters.  Lie to them all you want, Rich.  

I click their time on the clock when they take that sharp deep breath and ask “Any questions?”  

Best time so far:  4 min 17 seconds.  All this while gowning up, gloving up, and performing what I think they consider a physical exam.  THEN the stick they poke in my cage.  They ask if we have any questions before they rip off gown and gloves.  I haven’t decided on a point system for that maneuver.  

They direct their offer of taking questions to Rich first.  He always smiles and says, “No, you’ve explained everything…”

Then they look at me and ask if I have any questions.  Call me crazy but I swear I can see them cringe when it’s my turn.  It must be my reputation because I have never asked a question.  Every single time I just smile and shake my head.  I bite my tongue.  Hard.  I do this in order to soften my tongue so that nothing mean or sharp can spew from it.  

Okay, now and then I’ll fuck with them.  They’ll ask if I have any questions and I’ll pause, forcing full eye contact with them like I believe they really want to hear a question and I’m trying to formulate something that will make them pee their pants.  Cut me some slack, it’s not even a whole “one-mississippi”.  Then I shrug, schmeer a big smile on my face and say, “No.  But thanks for asking.”

I must explain.  I truly feel no animosity towards these people. I have no expectations for them.   I’ve just had three years of this dog and pony show and it is now just one more pebble in my shoe.  They walk in and I immediately feel like a bit player in a bad play.  It’s different twists on the same pathetic lines.  I think there is a class in medical school where the lines are drummed into them until their role in the  play is permanently hard wired in their brains.  (Shit.  I think “permanently hard wired” is redundant.  Sorry, Christopher.)

I want some improv.  I bite my tongue because when they ask me if I have any questions I want to look at them with shock and awe and say “Wow.  You ask that like you might have some answers.”

OR:  “I doubt you have answers, so why would I have questions?”

OR:  Just giggle in an eery way that scares them enough that they don’t bring the dogs and ponies back.

OR:  “Gosh…I know how to give stupid answers to stupid questions, but I don’t know how to give stupid QUESTIONS to stupid questions.

OR:  “No…but if I think of one, I’ll write it on the bill you send us.  With a SASE of course for your answering convenience.”

Seriously.  It’s not their fault.  They’re doing a fine job and in their world Rich is just a case with a billing number, with good insurance, with a shit storm going on that no one can figure out.

The hard part is when Rich’s Doctors come in.  They ARE vested in him.  I say with confidence and without exaggeration that they have come to feel a bond with him that makes all of this as hard on them as family.  

Dr Ciltea and John (I’m sorry, John, I don’t know your last name, PharmD.)  They come in with valiant smiles that I immediately connect with.  I know what the other side of that smile feels like.  I have a hard time meeting their eyes because I know what I will see and I trust them to understand that my bucket is full with my own pain so I’m afraid to recognize theirs.  They greet Rich with calm, slow words that suggest they have nowhere else to be.  Things are said and discussed, but I can’t seem to focus on the words.  Rich assures them and then re-assures them and they receive him like they are hanging on his every word.  They allow him to comfort them and thank them.  I hear them respond and interact, but i can’t make out their words, just the music of their voices.  I sense the moment when everyone in the room is uncomfortable with my silence and I must speak.  Words come out of my mouth  that I can’t remember other than feeling certain they were stupid, foolish and scratchy with the effort not to cry and spew gratitude.  

Every single moment I have had with Rich since last October has been the result of Dr Ciltea and Dr John’s  countless hours of efforts, research, long distance calls and stone cold determination to give him every tool they could give him to fight this.  

Then Richard says to them.  “So do you think we can get rid of this thing?”  He’s referring to the IV pump he has been wearing in a pouch around his neck for six months  that is infusing his pic line with 50% dextrose/35% saline 24/7.  An infusion that keeps him from dropping into a hypoglycemic coma…death.  An infusion that we have to schedule every single day around.  I felt the need to field that question for them.  I’m getting WAY to good at being the bitch.  I tell Rich, “No, sweetie, that’s my sister wife and she’s not going anywhere.”

Dr Ciltea smiles and nods agreement and Rich surrenders that dream.

Dr Ciltea gave us her personal cell phone number months ago.  I think I lost it before I could program it into my cell phone.  She tells me to please call her.  Anytime of day for any reason.  I nod, certain she means every word; hoping she understands I will never be able to bring myself to do that.

Then I hear Rich telling them that he’s looking forward to getting home and back to work in his garden, and   when the pic line comes out he’ll be able to play golf again…

Instantly I see it.  A bright, glowing, undulating green portal.  Just like in the movies.  Holy Shit, Batman,  PIXAR got it right!!!!  THERE’S the Worm Hole!!!     YAY!!!   And it has a welcome mat with MY name on it!

Double YAY!!  And just as I’m about to step into it, one of the dog-damned voices from the van whispers into my occipital region….  “well….that would be rude.  Wouldn’t it.”    The beautiful green wormhole portal dissolves into the words bouncing around in my occipital region. My next thought is “holy shit, I hope I didn’t just say FUCK out loud.”     That would be rude.   Wouldn’t it. 

Then there’s Dr McGee, Rich’s oncologist.    I just can’t go there because it’s Rich’s relationship.  I feel like I’m a crazy aunt that Dr McGee genially tolerates because he loves the uncle attached.  Maybe down the road I can write about what he means to Rich.  But not right now.    I only bring him up now to explain that Rich would give him his ass and shit through his ribs.  

I recently learned that a doctor cannot tell you or advise you when it’s time to stop fighting.  He can only tell you what can be done.  I’m certain that is something that malpractice attorneys came up with and I understand.  One more way in which insurance companies have tied the hands of really good doctors.  So Dr McGee can only say what he can say, and if he told Rich to crawl out into the parking lot and consume 3.78 ounces of green jello, Rich would do it.  

So I have spent every ounce of sanity, energy and comfort to help Rich come to terms with what he’s already told me he wants, and then I hear him ask Dr McGee, “so do you want to try the Affinitor (chemotherapy) again?”

Dr McGee looks at me with an expression that nearly screams, “if you’ve got a life saver handy I would appreciate your tossing it in my general direction.”  

I was far too slow on the uptake.  So Dr McGee tells Rich “We can do that if you want.”

Rich says.  “Yeah,  I think maybe we should give it another whirl.  I know it’s not going to help me but I want you to do whatever you can to learn something that might help someone else.”  

I feel a strong desire to step in and save Dr McGee, but I’m too distracted by the lovely colors that appear as brain cells explode just 2.34 cm behind my left  retina.     If I don’t concentrate on those lovely colors I’m going to hit Rich’s call light and beg his nurse to inject me with something that will put me in a coma for about three days.  Because, dog-damn, once you’ve missed that wormhole, a three day coma is exactly what you need to transcend the disappointment.

So here’s where I’m at today.  (Bet you thought we’d never get here…)

Rich is clear with me on his wishes. He wants to come home with palliative care only.   He can’t seem to convey the same to his doctors.  He doesn’t want to fail them.  He wants them to wring every bit of knowledge they can from him so they can help someone else.  Bitch that I am, I’m trying to tell them we’re done, and Rich is telling them he wants to give them every ounce he has left in hopes of helping them help others.

I haven’t yet figured out which language I need to use to explain to Rich that if he wants to come home, I need the help of Hospice, and we can’t get Hospice care as long as he continues to be treated.  I work at easing him gently towards this, but we’re running out of time.  The doctors are bouncing the word “discharge” at us.  And what have we all learned about “Discharge”, boys and girls?  That’s right.  It happens without warning.  If we’re not ready, they won’t care.  It’s like the bartender says at last call.  “You don’t have to go home, but you can’t stay here.”   The one promise he as requested and I have given is that he will come home.

I’m walking this tightrope between Rich and the fucking wolves at the door.  

I can’t help but wonder if I appear to his doctors as a heartless bitch who just wants this nightmare to end.  It’s not so much that I care what they think (okay, I do) but I fear that the appearance is the reality.  In my heart I believe I just want to carry out Rich’s wishes, but three years of dashed hopes and heartbreaking efforts, exhaustion, pain, and dog and pony shows have flooded me with doubt about my intentions.

I thought I would do a better job of this.  Those of you who have followed this blog from the beginning know how many times I’ve had to tell him good-bye.  I should be good at it by now. I should be strong enough to function and numb enough to survive it.   I should have layers and layers of scar tissue that insulate me from all things cancer, all things administrative, all things useless, pointless, thoughtless and annoying.  

But no.  I sit and puke my soul into a blog that has become the only medication that works for me.  I loathe how pathetic and self-pitying this will read for me later, and even knowing that I will still post this.    In my defense, this blog allows me to purge so I can continue to put one foot in front of the other.  Step by step.  Minute by minute.  Put a smile on my face and move forward.  Kiss ass, kick ass and not apologize for offering blow jobs.  

I feel like a lame ass excuse for someone attempting to be strong, noble and do the right thing.    I will post this ugliness, with witnesses who will vouch for me that I neither desire, nor will I accept any sympathy.    

In this strange new land where the language is oddly familiar while painfully foreign there is a soft little voice in my head (frontal, not occipital) that urges me forward and tells me maybe there is just one person out there who will read this blog and take comfort from not being the only one who feels drawn to wormholes, and bites their tongue, and struggles with the demons within and the vultures at the door.  I need to believe that you are out there and I have given you a shot glass full of “Fuck this, I can do it.”    

Then again, I could be wrong.

In the words of Elton John....

“…the Bitch is back”

First I was having problems accessing my Yahoo portal to the blog.  Mostly, the past three months since pellets were placed have been too horrible for anything other than day to day survival.  Over THAT.

Rich was admitted to the hospital last Tuesday.  The swelling in his ankles started moving up his legs so I disregarded his orders and called the doctor.  He went in for IV lasix, we were thinking it would be a simple fix and then home.  We were so confident of that that Rich said he didn’t want me to come to the hospital.  “Just take a break from this for a couple of days.”  I didn’t argue.  In the past three months he has been so miserable that he has become increasingly distant with me.  

His ex-sister-in-law had arranged for some Master Gardeners to come and clean up the garden for us.  Word spread and over the course of this past Saturday twenty some people came and went, volunteering several hours each of back-breaking work.  The results are amazing.  A dream came true.

Early that Saturday afternoon of magical garden transformation I took my lunch break, sitting on our stone bench in the corner of the yard where only my brother was working.  His cell phone rang.  It was Rich.  He was asking when I would be coming to the hospital.  I could hear in my brother’s voice that he could hear something in Rich’s voice.  Bottom line… “when she comes, I need you to come with her”.  I swallowed hard and then the tears came.  A great, gulping, gushing flow.   Once again I curse my lack of the beautiful ooze of shock gene.  

In moments there was Christopher, Lynn, Alicia and Dr Peiffer kneeling in front of me on my stone bench while everyone else continued to work in the garden.   Dr Peiffer “wrote” a prescription for an immediate glass of wine, and like magic it was in my hand.  

I’ll spare you the drama.  It took some time but they managed to get me to a point where I could follow their orders…breathe, .get a shower, breathe, get dressed, breathe, give Christopher your car keys, breathe,  You can do this….breathe….

Thanks to them, I found myself at Rich’s bedside in full readiness.

There is now a tumor inside the vena cava.  It’s inoperable.  It is causing 85% blockage of the return blood flow to his heart.  Hence, from the tumor site down, he has become the Michelin Man.  They told him that “as things stand now, you have a couple of weeks.”  He told me everything he knew with gentle calm and once all those ugly words were hovering above the bed where we sat holding each other he began to cry because that was the point where he wanted to tell me how sorry he was for putting me through all this.

I was aware of the knife that had just been plunged into my heart; also aware that any attempt to remove it would result in my bleeding out.  So I left it there untouched and I focused.  

A little while later Christopher and I were home, and everyone was gone save Alicia and Christy, still working, cleaning the kitchen and hanging Rich’s wind chimes on the patio.  

As my brother and I are want to do in such situations, we built a fire, the next few hours spent on these three people rebuilding my foundation of existence.  

I spent Sunday afternoon with Rich.  We loved each other a lot. We drifted into the preliminary talk that you have to have before you can get to the Real Talk.

But wait.  There’s more.  

He has a lung infection.  They put a drain tube in his right lung and connected it to a lung vac so there would be suction rather than just drainage.

So there he is.  Swollen a heartbeat away from his skin splitting open, a lung vacuum on his right lung and two IV pumps infusing all that the AMA can throw at this on his left side; in one of the smallest rooms on the floor and he begins to get a worrying feeling in his colon.  Then he tells me that he has been asking for a bedside commode for two days now because he can’t make it to the bathroom in time and soils himself.  I immediately begin requesting a bedside commode in a slightly different  tone than Rich tends to use.  For four hours, I repeat the request to every member of hospital staff who enters the room.  After four hours the worrying feeling in his colon descends to a threatening point.  

I march myself to the nurses’ station where “report is being given” so they are fully assembled.   All present for me to query in a low, calm voice, “Can someone please tell me whom I have to give a blow job to in order to get a bedside commode for my husband?”  Then I smiled.  We’ve been asking for two days.  I offered to go get it myself because I used to work there, know where they are, just give me a hall pass so I don’t get busted by Security for stealing hospital property  that is a receptacle for feces.  Apparently these people had never been offered a blow job before because I was met with stunned silence.  I marched back to Rich’s room.  

I texted our PCP, “Dr Peiffer, do YOU have the name of the person I have to give a blow job to in order to get a bedside commode for Rich?”  Within two minutes my phone rings, and Dr Peiffer is assessing the situation and my combustability. While we’re on the phone, the treasured object appears.   Apparently our PCP is so good that all she has to do is wish for something and it appears for us.  Rich was “relieved” and I then spent the next 90 minutes apologizing to every member of staff for my shit-ass lame impersonation of Shirley MacLaine in “Terms of Endearment”.  

Monday Rich and I had a nice visit because my King had a throne and all was right with the world.  (More on this later)

Yesterday I went in at the time Rich requested because they were sending him for tests. A bone scan, because if the cancer has metastasized to his bones…. well, we’re screwed.

Here’s how THAT went.  They did the bone scan.  Then, radiology wheeled him on his gurney out into the hallway.  And parked him.  Someone called for transportation to take him back to his room.  He laid on that gurney in that hallway for an hour and fifteen minutes. Without a urinal or call light.   It might have been longer had not his nurse started wondering where the fuck he was.  Later reports to me were that his nurse started jumping ugly to the point that one of the “head radiology staff” found him and made heroic efforts to navigate the intricacies of the floors and elevators  until Rich returned to his room.  

They explained this to me the following day with the assurance that the Supervisor of Transportation would be up to Rich’s room to apologize.  I took the report of events quite calmly, then assured the nurse that I SO did not need some hapless victim of short staffing to throw himself on his sword for damage control.  

“Seriously.  Nothing short of the Head Hospital Administrator on his knees explaining  how it would be okay for HIS family member to lay in a hallway for an hour and fifteen minutes, or okay to wait two days for a bedside commode  after soiling themselves three times…  No, really, I’m good.  Just not up to a Dog and Pony Show right now….”

Moot point.  No one showed up to say shit about shinolah to us.  

I just smile.  I know the One who holds the keys to release the Flying Monkeys.

And now if have to say This about That.

Claire Wilson is the most amazing Director of Nursing.  She supervises the oncology floor.  The ENTIRE staff, from nurses, to assistants, to housekeeping, to the lovely little girl that makes milkshakes for the patients…  are AWESOME!!!!  Transportation is awesome and everyone I may have missed us also awesome.  But I don’t care what your training or degree or expertise is, three people cannot do twenty people’s job.  I will address this further.  Somewhere.   It won’t be pleasant.

Today I got to the hospital early so I would be there when Dr  McGee rounded.  We were expecting the results.

We Got them.

The bone scan lit up like a skeleton wanting to be a Christmas Tree.    Rich has a large tumor in his left hip, smaller glow spots in his left femur; both shoulders, his clavicle and little diamond points in his wrists.  

It nearly broke my heart to watch Dr McGee stoically map out our Pit of Despair.  He tells us that the mapping of previous radiations suggests that they can radiate the tumor in his vena cava and relieve the swelling.  Then he addresses the hip and starts talking about the surgery that will place a rod in his leg, or else we are looking at a soon to happen hip fracture and…blah, blah, and 

I brought the whole thing to a rapid halt, bitch that I am.

“Dr McGee, Rich and I have talked.  You and all of his doctors have done an amazing job.  No one could ask for more.   I don’t think we’re going to get a return on that investment, so let’s just focus on palliative care and bring this mission home.”

I said what Rich wanted to say and couldn’t.  Why?  Because Rich can’t bring himself to fail his doctors.  I said what Rich and I spent loving, tearful moments preparing for in the event that the cancer had metastasized to his bones.  I said what no one wanted to say and everyone wanted to hear.  There was a brief silence and then a flush of relief from both of these men in the room.  I envied their relief. 

And so this day began.

The periodic parade of Hospitalist, Pulmonologist, Infectious Disease Doctor, Pharmacologist, Endocronoligst.  We Saw them all.  And each time they asked the perfunctory  questions and Rich gave the answers he wanted them to hear.  Then I would read the confusion on their faces because I know they had reviewed his chart before entering so I tried to explain things without sounding like I was talking about him like he wasn’t’ there, and the whole time I’m wondering if they think I’m just a heartless bitch who just wants this to be over? And how do I tell you that really, this is what he has assured me he wants but he just can’t bring himself to disappoint you, and can’t you please, please, please, see how much I love him and desperately want him to be comfortable?  And can you see that….

Then I remember.  It’s not my box of tissues.  

We’re pre-flight now.  Rich is mapping out the mission.  I’m waiting for his coordinates.  I’m getting my 

gear in check  and I’m sitting on the tarmac.  Standby.  I’m his wing man.  

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