Thursday, May 5, 2016

The odds in our favor...

Guys, we got some really great cancer news this week.  To appreciate it, you need to understand where we've been over the last three years.  Here's the condensed version:

C:  My knee hurts.
S:  I'm sorry to hear that, but I'm still going to need you to hang the Christmas lights.
(next day)
C:  My knee hurts.
Doc:  You have cancer.



Chris was 37.  The boys were 3, 6, 7 and 9.  Our whole life exploded.

Doc:  If chemo shrinks the tumor, your odds are great.

Two months of chemo.  We're in and out of the hospital.  Chris is miserable.  Rand starts crying when I need to leave him.  My big boys are struggling in less direct but louder ways.  The only place I can cry is in the car between the hospital and home.

Doc:  That chemo didn't work.  If the next one shrinks the tumor, your odds are good.  If not,...

Two more months of chemo.  Now we have a system.  The grandparents, aunts, and uncles have almost completely taken on parenting duties.  Chris has found some sort of mental zone where he's able to cope with the awfulness of chemo.  I've developed a twitch in my eye from the stress.

Doc:  Chemo #2 didn't work.  Let's take out the tumor.  Your odds are not good.  This will probably get you in the end, but maybe not.

Remove Chris' knee along with a good bit of thigh bone and some muscle.  Another year of chemo (while trying to regain mobility with the massive leg surgery) to hopefully blast any hidden cancer cells.  This is our life now.  Every month, as soon as Chris claws his way out of the pit that is chemo, it's time to give him more.  But we make it.  We survive a year and a half of chemo.

Doc:  Great news - you're done with chemo.  Other news - your odds don't change unless you make it two more years cancer-free.  Come back in three months.

When he was first diagnosed, it was like Chris was dropped in the middle of the ocean and had to swim to shore, with the boys and me on a raft, paddling beside him.  And now we've made it to land, but we don't know how long we can stay.  We're on a kind of three month shore leave.  So we try to balance enjoying the heck out of our time on land with preparing for another stint in the ocean - one that Chris may not survive.  And this is where we've been for the past two years - living our lives in three month chunks.  We've made a kind of peace with that arrangement, but it colors everything.  I watch Chris having a moment with one of the boys and remember how much they'll miss if we lose him.  I see older couples together and know that's probably something we'll miss.  I get tired and freak out on the boys and realize again what a crappy single parent I would be.  It's been a wonderful two years, and we've leaned in to this time and have loved on our boys and one another, but always with this heaviness and fragility.

But, we made it past another scan this week, and the doctor has adjusted Chris' prognosis.

Doc:  Things are looking good guys.  At this point, cancer is unlikely to come back.  We still have to check you every few months, but you no longer need to plan your lives around the possibility of more chemo.

It's the difference between, "May the odds be ever in your favor" Effie Trinkett style and "The odds are in your favor" from an oncologist.  And that changes everything.  We can make plans more than three months out without an asterisk.  I have fewer excuses to cry.  Guys, I will probably not have to navigate teenage boy territory by myself.  I can sit on the sidelines, sipping a margarita, cheering Chris on as he guides those precious boys through adolescent, testosterony minefields.  This thing - life with Chris and the boys - didn't feel like a gift until it was broken.  There's a whisper of redemption in it.

"Everything sad is going to come untrue and it will somehow be greater for having once been broken and lost."  Tim Keller



Tuesday, June 10, 2014

No more chemo...

Guys, we made it through chemo. A few weeks ago, at dinner, Chris unveiled a PICC line-free arm, and in what Chris proclaimed the most gratifying reaction to his good news, Jacob jumped up onto his chair, flung his arms out and sang,
"Everybody dance now!"

Chris is still recovering and has a lot of ground to regain, but this time, he gets to stay better. Several months ago I wrote about being where I am. If you're in a painful, hard place; if it's not fixable but what is intended for you, then be there. Lean into it. Do it with your heart and soul. And guys, where we are right now is happy. I feel like the Israelites must have felt when they crossed the Jordan River. Like a promise has been fulfilled, and I can move out of this godforsaken tent and build an actual home. Entering the Promised Land wasn't the end of their struggles, but glory hallelujah, it was definitely a time to celebrate. So, we're having a party. I only have a vague-ish notion of what I'm serving, but the No More Chemo playlist is in great shape. The boys and I have been rockin out to those songs.
  • Forget You by Cee Lo Green because... forget cancer.
  • Mama Said Knock You Out because Chris H has been knocking out some cancer.
  • O Love that Will Not Let Me Go because The Lord has showed up for us in cancer.
  • Tonight, Tonight by Hot Chelle Rae because I dare you to resist singing along with it, and we're at a roll down the windows, turn up the volume and sing your heart out place right now...
Around this time last year I had a breakdown in an elevator at the hospital when I realized I probably would not be able to take the boys for our annual week in a cabin in a bit of wilderness. A kindhearted woman with a PICC line and no hair tried to comfort me, but she just made me feel worse - like a self-aborbed fool crying over missing a favorite vacation to my exhausted, perpetually recovering husband who would definitely be staying home feeling crappy (at best) for the summer. Thanks to my sweet father-in-law who devoted his year to lightening my cancer load and my parents who tracked down a cabin not too far from Houston but enjoyable in August (look at a map - it's not trivial), we did get to take our trip last year. This year, the boys and I are in Colorado. It's been another amazing trip which is not so much a testament to our awesomeness as it is to a quiet, scenic location and some cabin traditions and guidelines that have evolved over the years.
  1. No electronics. Not even for me.
  2. Supply the boys with whatever ridiculous, normally off-limits breakfast cereal they choose.
  3. Just because children complain about something doesn't mean you shouldn't do it.
  4. When you go for a hike, think of it more as being in the woods than covering any real mileage.
  5. Except for one day. Go for a hike that pushes the envelope - something ill-advised that they'll be proud of completing.
Our first year, this was a 3 mile hike that ended with Jacob on my shoulders and Bryan in my arms. This year Cecilie the Fabulous agreed to keep Rand, and our ill-advised hike was a 7-mile trek through snow, across creeks, through meadows and up mountains. But, my unlikely favorite part was along the side of a mountain that had been devastated by fire. It was stark - blacks, greys and whites, all the more jarring after miles of lush greens and browns. But this ruined forest held it's own kind of stoic, understated beauty. The fire left unlikely patterns on some of the blackened tree trunks.

Any bit of color - vibrant yellow flowers or bright green shrubs that went unnoticed in the thriving, healthy forest were remarkable - beautiful in that way that hurts - against a backdrop of desolation. It made me think of our past year and a half with cancer. The moments that I rarely notice in the midst of our happy, busy, cancer-free life - my family eating dinner together or Chris and I laughing over the boys' antics - felt like precious gifts in the middle of cancer. Miraculousness is easier to notice in the middle of a desolation.

I watched my boys hike their way through that forest that was and will be again. Each of them was wearing a bit of bright blue, and they were conspicuous in that stark forest - as they are when they're at the hospital with us. I worry for them over the cancer hits they've taken. To watch your dad go through this is hard and painful and it leaves marks in ways they can't understand yet. But I watched those bright, blue boys walk persistently on and felt assured - in a way I can't quite define or describe - that they're going to be okay, even if they're not okay.


Blessed are those whose strength is in you, who have set their hearts on pilgrimage. As they pass through the Valley of Baca, they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion. Psalm 84:5-7


Sunday, March 23, 2014

A weekend in pictures...

My mother had a great deal of trouble with me, but I think she enjoyed it. - Mark Twain

 

Sunday, March 9, 2014

Stumbling...

A few years ago I did a 100 mile bike ride with my family. Mine was an ill-conceived plan. I was in shape to do about 50 miles, and 100 - 50 is still a big number. The last 40 miles were rough. Miles 80 to 100 were ridiculous. At the beginning of the ride I was focused; I was chipper; there was a plan. My brother had a pig squeaky toy attached to his handlebars. We rode in a line, and every 2 minutes the little pig oinked, and it was time for the leader to move to the back of the line and the next person took over the hardest, front position. By mile 80, I was done. I didn't want to ride in a line. I didn't want to hydrate. I didn't want energy chews. All I wanted was to get myself and my bike to the end of that godforsaken race. When we found out at mile 90 that the route was 102 miles instead of 100, I nearly cried.

Friends, that's where we are in chemo. It's been fifteen months, and we're weary - limping to the finish line. The whole thing feels ridiculous and beyond endurance. We're at the hospital for another round of chemo today. It feels like we're a couple of washed out Vegas performers running through the same sad, tired act we should have quit years ago. Chris stoicly verified his medical information and accepted the medicine that's definitely going to make him feel crappy but will hopefully (we're staking months of our lives on it) make any subversive cancer cells feel crappier. I had the same worn out conversations with the nurse and pharmacist that, I'm sure, annoyed the hell out of them but also established me as a person less irritating to placate than ignore. There's always a moment before I speak to them when I think, "You know, most people really do like me, but you're not going to be one of them. I'm going to be that person you complain about tonight when you complain to whoever it is you complain to, but sustained nagging is the only way I've found to walk out of this hospital today with what we need," and then I begin my unremitting attack like that Komodo dragon with poison teeth on Planet Earth who bites an elephant, infecting him, then relentlessly follows him for weeks, refusing to let him lay down or stop to drink until the exhasuted beast just voluntarily lays down in some kind of aggravated suicide. It's not that the Komodo dragon is cruel, it's just hard to kill an elephant.

There were holy moments today too, but those tend to happen when we're alone. Chris with his hand on my leg in the car on the way here because he could see I'm struggling today. And friends, that's what love is - comforting your wife on the day you have chemo. We usually listen to NPR in the car, but this morning's program was "The Way We Die" so I plugged in my iPhone and hit shuffle to hear Jars of Clay sing,

On Jordan's stormy banks I stand and cast a wishful eye to Canaan's fair and happy land where my possessions lie. I am bound. I am bound. I am bound for the promised land.

And I laughed at the irony and beauty and we sang along. In our room I told the same comfortable old jokes about how things are harder on the caregiver than the patient - especially the nausea and needles. Then we negotiated the lighting situation. Chris prefers absolutely no light. I feel like the dark shrinks my soul and probably his too, he's just not emotionally aware enough to feel it. He threatened to call my mom. I rolled my eyes and gave in. Then he fell asleep, and the sadness started to creep up on me again, so I took out my Bible and read my cancer psalm. And when I got to this part,

You give me your shield of victory and your right hand sustains me.

I remembered my sons' piano recital. A few times, a student would lose their way in the middle of their piece. The teacher, a lovely, kind-hearted elderly woman, would sit beside them on the bench, place her right hand on their back and whisper words of instruction and encouragement, and the child was able to continue.

So, I'm not finished with my song and I'm stumbling, but his right hand sustains me.

 

 

Thursday, January 23, 2014

There's no crying in deer hunting...

Guys, there are scenes from cancer that would break your heart: Chris sitting at the window watching the other men play basketball with our sons and nephews. There are so many things he may not be able to do again - basketball, skiing, hiking (also bowling and roller skating, but he's reconciled himself to those losses). So when the men of my family organized a trip to take David and Chris on their first hunt, I was... verklempt.

They had such an amazing time. My dad, my uncles, one of my brothers, my cousin and nephews were all there. There were weapons, rude noises, lots of red meat, and, apparently, with no moms in the picture, unlimited cookies. David and Chris each shot their first deer. David got a couple of wild hogs, too. Evidently, Chris is an excellent shot with a pistol. David came home bragging on his dad's prowess with a gun. They both came home refreshed, freer. It was like they got to check out of cancer-land for a weekend, and something unseeable loosened its grip on Chris.

I know there's no crying in deer hunting, but to see my husband and son doing something manly, something they've always wanted to do, that has nothing to do with cancer, was so overwhelmingly good - real-life-good not cancer-good* - that I'm afraid I cried. I felt like I needed Tom Hanks to yell at me.

Are you crying? Are you crying? ARE YOU CRYING? There's no crying! THERE'S NO CRYING IN HUNTING!

Men come alongside one another in a way that's beautiful and foreign to me. It often seems to look like standing together and defiantly doing normal stuff in the face of terrible circumstances.

Bear one another's burdens, and so fulfill the law of Christ. Galations 6:2

*Cancer-good is best described by example: "You only have to wait 30 minutes to start the medicine that makes you feel like you have ebola."

 

Thursday, January 16, 2014

Incentivized by a 7 year old...

For the past year and a half, Bryan has had me on an incentive plan.  He doles out kisses at bedtime based on his assessment of my performance that day.  He keeps me updated on the maximum and the average number I can expect.  A few months ago he had to recalibrate and bring the max down some because he decided the nightly kiss routine was taking too long.  He's serious about his system.  The maximum amount of kisses is reserved for truly exceptional mom behavior, 
Bryan:  To get the full amount, you have to do something like take me to Disney World and Chuck E Cheese.  
and he insists on taking into account all the information from the day.  He's unmoved by emotional pleas.  His system generates some interesting bedtime conversation.

A few months ago, on a day when I made cookies, allowed extra video game time and took them to the pool, I still only got a little over the average.
Me:  Seriously?!?  The pool, video games and cookies, and that's all I get? 
Bryan:  (sympathetic but with a hint of condescension) Yeah, but spinach.
I had served spinach with dinner.

Like any good manager, he gives me advice on how I can improve my numbers.  Last night was a beautiful, clear night.  We had planned on watching Amazing Race, but I took the telescope out instead and showed the boys the surface of the moon and Jupiter.  You could even see a few of Jupiter's moons.  At bedtime I got a few kisses over the average.
Me:  Did I get so many because I showed you Jupiter and the moon? 
Bryan:  Yeah.  But you could have got more if I could have also watched Amazing Race.  Like maybe next time you could plan better and serve dinner earlier and we could watch Amazing Race and do the telescope.



Tuesday, January 7, 2014

Pulling on my blogging shoes...

Okay guys. I've been waiting for something really inspired or witty to come to me but have finally realized that I've just gotten out of the habit of blogging and I need to lower the bar for myself. So this is me tugging on my blogging shoes and limping through my first post-holiday blog.

Chris is doing well... not real-life-good but cancer-good. He did a cycle after Thanksgiving and it was okay. There weren't any of the horrible side effects we dealt with in the fall. He didn't even have to take the meds that give him crazy drug eyes. We expected that he'd have to be on chemo over Christmas, but given his record of not responding to chemo the way anyone expects, his doctor didn't want to foist him off on a colleague over Christmas. So, everyone (especially the boys) was thrilled to get Chris for Christmas. It was a wonderful imperfectly perfect holiday with a mish-mash of holy moments and just enough reality to keep me from getting insufferably satisfied with myself. There was a Sunday evening service when, during a carol, I looked over and saw Jacob asleep on Chris' shoulder. The sight of all those boys I love sitting together in church made my soul happy. Really, I should look at them all in dim lighting with soulful music in the background more often. We delivered cookies at the hospital on Christmas Eve, and my favorite barista - the one who always gives me the employee discount, was working, and I was able to thank her for making the coffee that brought me so much comfort over the past year.

But then, those holy moments only come in snatches. I got the Christmas Eve service time wrong, so we were late and had to sit in the lobby. One of the boys told me that in the future he'd rather not deliver cookies at the hospital because it's really not that fun. Two of them fought over who got to hand the cookies to the security guard. The winner of that debate got his in the end, though. The security guard was a gregarious and affectionate woman who insisted on giving him a big hug. Rand dropped a full glass of water on my toe on Christmas. It hurt so bad I had to leave the room to keep from cussing at him. I was sure it was broken. I thought about swiping some of Chris' serious drugs. I whined. A lot. By the next morning it was clear I was fine.

Chris: How's your toe?

Me: Fine. How's your cancer?

Wow. That's a lot of words and we're not even caught up yet. I'm going to pick up the pace. Chris did another round of chemo about a week and a half ago. It was okay. It's still chemo, but it's punch you in the gut and let you recover kind of chemo, not punch you in the gut, kick you in both shins, stomp on your face and then pull out your teeth on the way to the hospital kind of chemo.

Overall, Household H is doing okay. It's starting to feel like this chemo road may have an end at some point.

 

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