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.
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