Thursday, October 27, 2016

The Cancer Coaster

A week ago, Tuesday, our family enjoyed a fun-filled five hours making memories at the pumpkin patch, riding the "Jr. Train" (as Talitha calls it), eating out at one of our favorite restaurants, and shopping for the last of our Christmas gifts for one another.

Then the day seemed to go downhill on the Cancer coaster.

Ryan, sweaty and ashen, looked pale as he was attempting to do a simple chore in the garage.

"I'm going to rest, then tomorrow I will go to work for a few hours, just to say hi," Ryan told me.

Instead of his plan, he slept all day Wednesday.

I had hopes for the Cancer coaster to be heading in a better direction.

Ryan got up Thursday to go with us to Talitha's art class before I dropped him off at work.

But then again, things went downhill. The Cancer coaster had a mechanical failure and we had to call someone to help get things rolling back on track.

It took about 40 minutes, then we were back on our way.

Trudging slowly through traffic, Ryan and I had a difficult, but important conversation on his way to work. We ended up getting there just in time to turn around and head home right away, but we continued our conversation all the way home while little orange and blue fish distracted our littlest passengers on the Cancer coaster.

Long after the smallest members of our family were tucked into bed, we continued talking.

An important detail in Ryan's illness came to light and it ground everything that night to a halt:

Pressure.

Friday morning, I dropped Talitha off at school and called the hospice nurse, explaining symptoms and pain.

"Pressure" was the word Ryan used when his lungs were filling up.

"Relax, it's not that bad," Ryan said to me. "You just need to relax."

But that little word niggled at my conscious and struck a bit of fear in me. I decided to act and called City of Hope.

Within sixty minutes, I had a thoracentesis scheduled, an evaluation by a doctor and the papers to be off of hospice all within place.

I even lined up childcare, by the grace of God.

Later that afternoon, Ryan and I had a bet. If he wasn't admitted to the hospital, I would owe him coffee. If he was, he owed me coffee and then some!

Well, within five minutes of his procedure, he was calling out my name to get my attention and grinning ear to ear.

"I'm not impressed," his doctor that did the last thoracentesis told him. There wasn't any fluid collecting.

The Cancer coaster glided along and we turned a curve that left me exhilarated and HAPPY to be losing a bet and eating humble pie.

That night, Ryan was evaluated by the doctors and was told that for the most part, things were "normal."

My husband hasn't eaten more than the equivalent of less than one meal all day, every day, since early September.

My husband had felt extremely bloated and had abdominal pressure for 48 hours.

My husband has lost a ton of weight since his stay in the hospital at the beginning of October.

And yet, the doctors dared to say that these things are "typical, when you have the big 'c.' "

We got home and went to bed.

Ryan rested all day Saturday, but continued to do the bedtime routine with Talitha.

Sunday he watched church online in bed and rested again.

By Monday, though, my spirits descended as the Cancer coaster took Ryan down.

Down.

Down.

I watched him sleep all day with oxygen.

I barely heard his words.

He didn't want to do the bedtime routine.

I knew something was terribly wrong, but I fought it and pulled the e-brake.

I opened our bedroom door and Talitha came bounding in anyway. He put a smile on his face and they resumed their typical time together.

"Why are you in bed all day?" she asked him. "Because I'm sick, Talitha," he said.

Then normalcy reigned.

Tuesday, came and went in much the same fashion as Monday. One of his friends stopped by for a visit but Ryan didn't feel up to doing remote control stuff.

That was another big red flag flying over the tracks.

The Cancer coaster passed through a dark tunnel for days and Wednesday brought more darkness.

In the late evening after little ones were in bed, Ryan came downstairs as I made him home made chicken noodle soup, but he was so uncomfortable just standing there in our kitchen, I could almost feel his pain in my own body.

It hurt me to watch him.

"I just need more rest," he said. "And you need to just relax."

He went upstairs.

And my spirits went up with him because I was excited he wanted some soup.

I brought it to him. I finished my own bowl with vigor and was proud of myself for making him something without ruining it.

He barely took a bite, then felt full and bloaty.

The Cancer coaster took me down, hard.

I fell asleep, exhausted and ashamed of myself for my dark, down thoughts. I was mad at myself for not being able to do more. And frustrated with how long everything was taking (it took 20 minutes to make a bottle, at one point!)

I felt as though the Cancer coaster had transported me back to when we were dealing with Ryan's diagnosis process almost five years ago and I didn't know what was going on or how everything would turn out.

I was living life in a fog, of sorts.

And after five years on this roller coaster, today I feel like I am almost back to square one.

"I should be able to deal with this part of things better," I said to a close confidant. "I've been doing this for years now, why can I not just plug along as before without the brain fog and grief about hospice?"

There are no good answers.

There is no quick fix.

There is no resolving this the way I want to, short of a miracle.

Lost in my own thoughts a short (and long!) week after Ryan being with us during errands, I pumped gas while I waited for Talitha's art class to finish.

A simple tract got my attention in a clear, plastic bin on top of the pump.

"It's for you," the Holy Spirit whispered.

I took out the folded, faded paper and tears welled up in my eyes.

"What to do when someone you love dies" by Elisabeth Elliot, it read.

I have been walking around for the last month asking God what I am going to do after Ryan dies.

"What am I going to do?" I keep asking silently. "What am I going to do?"

Written by a woman who watched her first husband murdered and her second one taken by a long, suffering death by Cancer, her words ministered straight to my heart.

As I pulled into the driveway to pick up Talitha, I noticed I missed a call.

It was from Ryan!

My heart soared as I dialed his number, and I relished hearing his voice speaking to me on the other end of the phone.

"What's up?" I asked as non-chalantly as possible, trying to sound positive and encouraging.

"I'm going to work for a few hours," he said. "I promise I won't stay too late."

And so, the Cancer coaster continues on, turning in new directions within each hour of my day, every day.

Thursday, October 20, 2016

Hospice

I felt the excitement of the horse underneath me as it was ready for the bell to ring and get started running. I couldn't believe I was there, a jockey stuffed in the box, moments away from running my first horse race. My horse, Cancer, had already run toward the finish line and knew what to do. But me, this was my first race. And I wasn't ready for this part of it to begin.

RING!

The gate opened and I was thrust into a race toward an end that I could see coming at me too quickly.

I felt the pounding hooves beneath me, the rocking rhythm of the horse thundering towards it's goal, and me hanging onto the reins for dear life.

I wanted to step off the horse and remove myself from it all, but there was no exit option once the horse left the gate.

I had envisioned what this part of Cancer would feel like. As I looked around, I realized I had tunnel vision. I could see the finish line for my husband's life. It was drawing closer and everything else was rushing by me in a blur.

Then the race ended. We left the hospital two weeks ago, and Ryan went home on hospice.

Part of me wanted to know how all of this felt, and part of me has dreaded it since the day I knew he wasn't feeling well for much, much too long.

In some ways, there is...

relief

Chemo treatments are probably a thing of the past, but we leave the door cracked for them as an option should Ryan get better and be well enough to tolerate their nasty side effects.

Being on hospice means no more driving to City of Hope, which is an hour away, one direction.

No more scheduling appointments with multiple departments and coordinating everyone.

No more seeing all the other Cancer patients and their hope or despair.

No more entertaining the kids while we wait to hear good or bad news.

Now, don't get me wrong. I have and can handle more of all of those things, if it means more quality time with Ryan.

But there's a bit of a silver lining to hospice...

Instead of driving so much, everyone on the hospice team comes here to our home.

Ryan gets to work because hospice allows for that.

And the care focus has shifted from aggressive treatments that will sustain life for a limited amount of time to making the time Ryan has left...

comfortable

His pain has been managed pretty well, and the hospice team has been amazing, flexible and kind.

Compassion shines through everything they do and although part of me wants to reject their being here for the reason they are coming, the other part of me is grateful for the 24-hour care and support I have at my fingertips.

Hospice is a sad place to be.

I am sad that the journey is coming to an end.

I am sad for Ryan.

And I grieve for myself and our girls who will go it alone, very soon.

Only 4% of Stage IV Stomach Cancer patients live to 5 years past diagnosis. When I first read those words, I thought that it would be impossible to make that and somehow couldn't see past the end of the month in February, 2012.

And yet here we are, only 4 short months away from living with this Cancer in our lives for 5 years.

I am so grateful to God and to the team at City of Hope who have worked to give Ryan more time with us. And if God or City of Hope or another Cancer treatment center told me that they had the treatment that would slow the Cancer growth or reverse it, I would gladly sign up our family to do this for another five or fifty years!

And I would gladly sign up for the miracle that Ryan got scanned and was considered NED (no evidence of disease). Um, YES PLEASE! Sign up the Waters family for that plan, ASAP!!!

But, as I survey the landscape of our lives together over the past five years, I am so glad and grateful we got to cram so much awesome living into such a little amount of time.

I just wish we had more.

Lord, help me to be content in all circumstances.

Even in Ryan being on hospice.