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My husband’s mid-month MRI didn’t bring good news. As if the December 20th bad news that the cancer had spread from his liver to the abdominal lining and rib bone wasn’t bad enough, we found out on January 22nd that the cancer had become even more aggressive. There are now more tumors in the liver, the large conglomerate mass in his abdomen has become even larger, there is a new large mass in the abdomen, several lymph nodes are involved, there’s the tumor on the rib bone, and now there are also several small tumors on the spine. This wasn’t the news we wanted. This wasn’t the news we expected. This isn’t the news anyone wants to hear ever.

And then there was the bilirubin issue. It had risen to an all-time high of 6.4 right around the time of that mid-month MRI; 1.2 or lower is normal. They’d told us there might be blocked bile ducts, we had a failed ultrasound because there were too many tumors to visualize the ducts, then came that MRI. The radiologist said there weren’t any blocked bile ducts, but second and third opinions from surgeons suggested there were constrictions in the bile ducts and surgery should be scheduled ASAP so we have one last CHANCE at getting this bilirubin down to 1.5 or lower so we can have one last CHANCE at going on the clinical trial in Nashville.

The morning of December 20, 2019, we both woke up thinking the cancer was still confined to the liver and all the labs were acceptable for starting a new clinical trial on January 2, 2020. We woke this morning, the morning of January 31, 2020, and my husband is now on full-time short-term disability, the cancer has spread all over his body, and we can’t start any trial or treatment unless his bilirubin can get from a current 4.7 to 1.5 or lower.

“There’s a CHANCE we could get on a trial.”

“There’s also a CHANCE this could go downhill fast.”

We chose to take a CHANCE. We chose to have surgery to place stents in my husband’s bile ducts. We chose to do it on Friday instead of waiting until the following Wednesday so we’d have a better CHANCE at getting the bilirubin down sooner rather than later, a CHANCE to get on the clinical trial sooner rather than later, a CHANCE to get treatment for the tumors sooner rather than letting them grow more.

“Do you think we should meet with palliative care?”

I chose to take a CHANCE, to ask the question that no doctor, no nurse practitioner, no nurse, no medical assistant, no social worker, no NOBODY had EVER asked us in 19 plus months of dealing with this incredibly rare form of cancer called metastatic uveal melanoma. I chose to take a CHANCE on behalf of my husband, on behalf of myself, on behalf of our children and our families. I chose to take a CHANCE when I asked this question because for four months, I KNEW in the depths of my gut that nobody was properly managing the symptoms and side effects my husband was experiencing from cancer and cancer treatment. And that is NO way to live, NO way to live your life.

“I’ll send a referral, but I don’t know how quickly they can get you in.”

It took eight days to get into the palliative care practitioner. She was beautiful and lovely, with glowing, loving eyes that understood all the holes in our care that hadn’t been addressed for months. She took time to hear about the pain and the nausea, about not being able to eat and sleep, about the pressure in the abdomen, about the worries associated with stage 4 cancer. She was smart and quick, with words that came swift and easy, with fingers that flew across the calculator as she tried to determine which patch dose would best alleviate my husband’s pain while we continue to navigate this bilirubin issue, while we wait for another CHANCE at treatment. Despite common beliefs, palliative care isn’t about dying, it’s about trying to LIVE better. It’s a CHANCE at living better, a CHANCE to live a higher quality of life than you’ve been.

I told my husband right there, right then and there in the palliative care room that THIS is the kind of medical work I could do. THIS is the kind of care I’d want to offer people if I was in medicine. In fact, THIS is the ONLY kind of work I’d want to do in medicine. Caring for people and helping people live better. THIS is holy and good work, indeed.

We all have a CHANCE. One CHANCE at life. ONE CHANCE, friends. That’s it.

Whether we live well, or whether we live in pain and purposelessness, that’s up to us.

Live well every day.

Take a chance now. Now is the only time to do whatever it is you’re supposed to do. Now is the only time to do what you WANT to do. Now is the only time to do what you NEED to do. Now is the time.

Live well every single day, even if all feels lost.

This is your moment. This is your time to shine. This is your time to break through and see that you have significance. This is your time to see that your life is a story, and your book isn’t finished yet, friend.

Live well every single blessed day, even when you’re exhausted.

Take a CHANCE at sitting and doing absolutely nothing for a moment. Put your feet up. Listen to some cello, stare out at the rain or snow. Wallow in the pain. Be sad. Just cry. Do whatever you need to do to cry. Lament all the things gone wrong. This is your CHANCE.

Live well every joyous day, because this is your LIFE. This is your CHANCE.

Love your parents. Love your kids. Love yourself. Take a look at who you are and be your very best self. Take a look at your parents, your kids, your friends, your loved ones and every blessed folk you pass by, and say YES, this is our DAY to love and live and take a CHANCE on living our very best life. These people are amazing. I am amazing. I can live and I am here. I am living life. I am alive.

God bless us, we are alive. Today we are alive.

Let us live.

Let us take a CHANCE.

Today.

We live.

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.

Disconnect.

Hmmm…

“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.”

Disconnect.

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.

Disconnect.

Ugh.

I hated it.

Disconnect.

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.

So yeah.

Disconnect.

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.

Whatever cancer.

  1. Megan Mclaughlin says:

    Amy – I couldn’t agree with you more. It’s terribly difficult to put in to words how awful cancer really is. “I thought you were in remission”, “I didn’t realize you were so sick”, “Is there anything else they can do?”. The constant stress and worry while you are waiting for test results. The uncertainty of all the side effects. The “what ifs” and “i wish we hads”. Nothing is straight forward and simple with cancer. You cannot truly understand the beast until you have been through it yourself. The disconnect will always be there so please know you are NOT crazy. Sending prays and positive thoughts to you and your family <3

  2. Debra Rodriguez says:

    Amy, you did a great job of expressing what you’re going through.  Although I don’t have cancer, I get comments about not looking sick a lot.  There is a disconnect.  I get infusions 10 days a month that are keeping me alive, don’t have energy to get out of bed most days (“are you depressed?”) no I have severe fatigue from 5 autoimmune disorders and the med side affects.  This is not about my story, it’s about that disconnect that you feel frustrated with. All the never ending tests, results, what does it mean, what do we do, no answers, researching yourself to help head scratching doctors pursue an answer…repeat.  It’s hard, maddening sometimes.  Thank you for sharing.  Such an honor (although I wish he didn’t need it) to pray for Seth many times a day).  I have been asking God from the bottom of my heart to give Seth his miracle. ????????♥️????

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