My husband bumped into Maurice at the LAX airport on his way to or from the American Music Awards. Maurice, our former neighbor. Maurice, the father of seven, of eight we later ran into at parades, BBQs, church services, Round Up nights singing songs around the fire, random places like Walmart’s baking goods aisle before we moved from Minneapolis to Seattle. “It was good to see Maurice,” my hubby proclaimed. Of all the people he’d run into at LAX, of course it was Maurice. Us, now in Seattle. Maurice, in Minnesota. Seth and Maurice at LAX. A happen chance. A happen stance.
“You could tell there was a bit of a disconnect when he saw me,” said my hubby. Maurice and his wife had been following our story on my website, perhaps Facebook. Wherever. However. It’s what we intend. To be connected to family, friends, former people once present, active in our lives. To share our story. To give them glimpses into this leg of our way home.
“You could tell there was a bit of a disconnect when he saw me.”
“What do you mean,” I asked?
“Well, maybe when he read your posts he thought I was going to be a lot worse than when he saw me in real life?” responded my husband, perhaps a bit reluctant to interpret the disconnected he sensed, never actually asked to be verified.
“He and his son laid hands on me and prayed for me right there in the airport,” he said. “We chatted for a while, caught up a bit before we parted ways. It was good.”
It bothered me.
I sat still in the dark of the passenger side as our car continued down the interstate to Portland for yet another stage 4 cancer treatment for my husband just one day after he’d returned from his 5-day business trip to the American Music Awards in LA.
I hated it.
I pondered. Overthought. Broke out my phone and began typing whatever came out of my fingers. Words. More words. Word after word. I don’t care if this sounds good. I don’t care if this is right or sound terrible or whatever. Just let me write it out. There is something to this disconnect that bothers me to my bones. I don’t like disconnect. It’s not me. It’s wholly NOT me. If there’s one thing, ANY thing I want to be known for it’s connection, not disconnection. Authenticity, not deceit. No beating around the bush for this gal. Disconnect? It’s nothing I want to be a part of. Real. True. Authentic. Being. That’s all I want to be. Forget anything that connects me to disconnection.
If anything. Any ONE thing I’ve tried to do is portray this cancer journey, this stage 4 cancer journey as real, authentic, true. My truest, most authentic words. My truest, most honest retelling of my side of this story, my side of this journey.
The disconnect my husband perceived in Maurice bothered me. I didn’t want Maurice to sense a disconnect between what he was seeing in my husband in real life and what I had portrayed about my husband in written word. If there was a disconnect, I guess it was my fault? I’m sorry. I’ve done my best to portray truth. But cancer is deceiving. Cancer is a deceitful beast. If anything will make you feel disconnected, if anything will make you second guess what you’re seeing and hearing and experiencing, it might just be cancer. So maybe it wasn’t my fault after all. My telling of the story was my telling of the story. Maurice’s disconnect was just the reality of cancer coming true. Cancer looks normal one day and cancer looks totally abnormal the next. This is the reality of cancer. It’s a walking, breathing, living beast of disconnection.
So I beat my fingers on my iPhone. Yeah, I beat it out. I wrote whatever I damn well pleased. Something needed to get out. I hated this disconnect Mr. Maurice and my Seth had experienced that day in LAX airport. My hubby on his way to or from a 5-day business trip to the American Music Awards, for goodness sakes, with STAGE FOUR CANCER. How can it get any disconnected than that? Forgive yourself, Amy. Give yourself some grace. This is a real life disconnect. The American Music Awards don’t connect with cancer. It’s not your fault. These are walking disconnects. You’ve told the truth. Be still and know you have told your truth. You have not gotten it wrong. Seeing isn’t believing.
Fast forward to the days and weeks ahead.
Sick. Then not sick. Then sick again. Then not sick. Then really sick too far out from the procedure to possibly be tied to the procedure. What is this? Should we call? Should we not call? Should we be worried? Is this a treatment side effect? Is this something else? Who is managing this? Who’s in charge? Who knows what’s really going on? When should we worry? What numbers matter most? At what point to we worry about LDH, ALT, AST, AlkPhos, Bili, this and that? What do all these numbers and letters mean anyway? Doesn’t it matter that this number is high? Doesn’t it matter that this number had lowered and is now higher, and it’s supposed to be getting lower every week? Is seeing believing? Do I believe your words when you tell me it’s a treatment side effect, or do I believe my gut that tells me this is something else?
He flew to Nashville on his own. I stayed behind this time. We decided we could spend $820 on something different. I’d join him next time. Now we only hope there IS a next time. Yes, he verified the morning of that Friday that we’d be getting scan results. Fresh scans. Yes, fresh scans. Oh happy day. Or not. We don’t always know. He FaceTimed me in to the call with Dr. M. Another doctor. Another day. Only this one was good. Very good. Tumors on left side of liver have mostly stayed stable with maybe a little shrinkage. One tumor on the right side grew by 1 cm, but we don’t know if it’s real growth or inflammation. They often say that. What’s a person to know. If a radiologist and oncologist don’t know what they’re seeing, how are we supposed to know what we’re dealing with? Just asking. Who knows? Nobody really. They do their best. They’re only human after all. This I know for sure. And there’s a tumor in the abdominal lining. And on your rib bone. “This is the first time we’ve heard of the cancer spreading outside of the liver, so this is kind of big, bad news for us,” said my hubby to Dr. M. “Yeah,” she replied. As if she was supposed to say anything else. I’m sure she said something else, but I don’t recall now. Seeing and hearing aren’t believing. I watched the raindrops hit my office window and drip down slowly, as if creating an art piece as I listened to the news from Nashville. The cancer has spread.
Oh yeah. His bilirubin is up. So “we’ll need you to go in and get labs when you’re in Minnesota. Maybe on the 30th would be good. That’ll be close enough to the projected start date for the trial that we’ll know if you’re able to start.” Over the course of days and a couple weeks, bilirubin crossed over 1.2, the upper limit of normal, and moved right onto 1.4, then 2.4 10 days later, then 5.3, and now today 5.8. Seeing isn’t believing. Hearing isn’t believing either. Hurry. Rush. Get in for an ultrasound within 48 hours. If a bile duct is blocked, then we can put a stent in and get the bile flowing again and get these numbers down to 1.5 or lower so you can start the trial in Nashville. Hurry. Rush. Get it done A.S.A.P. This is important. This is big. This is urgent. High bili is not good. High bili isn’t healthy. Bili I see. High bili.
He can’t see. The ultrasound tech can’t see. There are too many tumors to see a blocked duct. He literally can’t see. “The ultrasound was inconclusive. You’re going to need a scan.” No CT? Then MRI. “We just had one.” “Have another.” “We should know what’s going on in 48 hours.” “No. Another .5 increase doesn’t necessitate you being admitted or going into the ER for this scan over the weekend. I’ll order a scan for next week. You’ll hear from scheduling.”
Wait. Wait some more. Seeing isn’t believing.
I wasn’t crazy.
Cancer is crazy.