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.
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