Tuesday, July 31, 2012

just a crack or two...

Sometimes I read Leonard Cohen's poems from a beat up paperback I picked up from the $1 bin at Half Price Books. I won't pretend to understand them, but I like to think about them. 'Anthem' is one of my favorite meditations because it has these lines -  'there is a crack, a crack in everything, that's how the light gets in.'

We're feeling pretty broken and cracked. They said these would be the hardest days, and they have been. Terry's body is taking the last beating chemo and radiation have for him. He, again, has responded with courage and faith. I am so proud of him. As much as I hate watching him suffer I am trusting that every cancer cell is being decimated. I am trusting that every minute of treatment and each day of pain will have been productive and that in a few months the PET scan report will be completely clean and he will be cancer free.

In June last year I wrote a post called 'my ideal woman' about a friend called Julie M and her husband. I had no idea. In the year since they have fought the fight valiantly, loved one another well, trusted and prayed, talked and listened, lived lives of example and sacrifice before their daughters and friends, and they've become even more broken. 

In my cracked-ness a few weeks ago I texted her, "Julie, how do you do it?" and her answer was, "Trudy. I pray like crazy. All the time." 

I believe her in a whole new way. I am living in the the light shining from her life.

As the hero at our house has suffered mightily this week the hero at their house has been moved to ICU. And barring a miracle their battle will be over sooner than anyone wants. 
The light is in their broken pots and is illuminating a path for us. Terry and me ... and you.

Fight valiantly your fight, whatever it is. Love well. Trust with every fiber. Be cracked. Welcome light. Give it back.

Thank you a million times for your sustaining kindness and prayers for Terry and me, for Stephen and Emily. 

Would you pray too, even if you don't know them, for Scott and Julie, Madison and Ashley? 

God is good and faithful. 

Tuesday, July 24, 2012

One last time...

It was a slow and quiet day in the chemo lounge. Here's the sweet faced angel who looked down on Terry all day - the others walked around in scrubs.  Here's the last bag of cisplatin (please God) to ever drip into his vein. 

Many prayers were answered. His blood work was great, his weight was stable. The day was quiet and uneventful. Terry slept on and off for several hours. We were finished by 4:30, Terry wanted, and ate half, a bowl of miso tofu soup on the way home.

There were new drugs. A patch for nausea and another for pain, plus a liquid pain med so he won't have to swallow pills while it hurts so much. 

Both the radiology and medical oncologists expressed their amazement at how well he is doing, how thankful they are he hasn't had many of the side effects which are possible, how pleased they are with treatment so far...and they then give warnings. This last treatment week and then the next 7-10 days will be the most difficult - the pain won't be over on Friday, we won't know the outcome of treatment for weeks and even months. The radiation burns on his neck won't heal for several weeks, the ones in his throat for 4-6 weeks, he won't taste or have salivary gland function for months, his hearing may continue to be affected, lack of energy is expected, his immune system is still fragile...

We listen, then smile and turn the volume down of their words in our heads. We know. It is still going to be hard for a while. Smoothies are going to be the main course for several weeks. We're gonna need drugs and the alternative therapies we've chosen to help out for a while. There are still going to be moments when things are very difficult. I'm still going to cry, he's still going to suffer and be brave and strong, weak and dependent all at the same time. We know.

Every day has had sufficient grace. Every minute we've felt Beloved and loved. Not once have we felt alone or abandoned. Exhausted and terrified a few times, but not alone. We are fighting, and being fought for. There is nothing to do but to live fully in this season, to learn to be loved and known here. It's the paradox of 'this is so terrible' and 'how can I be anywhere else?'.

Your prayers are our strength, friends. Thank you. 

God is good and faithful.

Saturday, July 21, 2012

"We must believe....

...that what makes us vulnerable makes us beautiful to God and dangerous to the enemy." I've been wrestling with this sentence since I read it.

Vulnerable. Beautiful. Dangerous. 

We are so vulnerable. Terry's immune system. Our hearts toward one another and to the words and deeds of others. Our ears to the very still, quiet Voice. 

There is much beauty. Terry's determination to finish treatment well, his will to serve others each day, his patience in significant pain. Our kids and their quiet attention. Our friends and their varicolored care. Our families and the ways their love is expressed. I think I am seeing glimpses of what God sees in people. The fellowship of suffering is beautiful. 

Terry's weakness is dangerous - I see it in his eyes, I watch it come alive in his actions. I wouldn't mess with him if I had a motive less than pure these days. Not that he would hurt you, but looking closely at who he is will stop you in your tracks. I try not to be, but I am a little dangerous in much less effective ways. I implore strangers in smoking areas to stop. I resolutely ask socially awkward questions. I beg friends to not abuse substances or themselves. I find myself pressing those I love toward wholeness - hard. 

But words are regularly more illusive. I don't really have any for the girl with the multi-pierced face and the multi-sliced arms in the yogurt shop. None for the guy in the time slot before Terry at radiation who comes out looking more not-real than real. Zero for the car repair guy who tells me about his wife's breast cancer. Nothing when a friend cries over his daughter's anorexia. All my words seem under the enforced and captive teaching of this season - instead I find myself hugging and patting. And in ever-present empathetic tears.  

You can laugh, if you know me well. Me without words IS funny. But you had better be careful as well - because I am also less afraid and more dangerous to that which is not true. It's possible I might hug you or I might say to you what I haven't before because I now see you more clearly in your vulnerability and in your beauty. You and your story are powerful and too needed to not be acknowledged. You are even more precious and I love you even more. 

One more chemo - Monday. Five more radiation days - Monday through Friday. Friday is Terry's birthday. The light at the end of the tunnel is growing larger. Please continue to pray for Terry in these last treatment days.

God is good and faithful. 

Friday, July 13, 2012

tech support

A year or so ago Terry spent some very frustrating hours trying to fix a computer problem. He finally called tech support. The helpful guy on the other end of the phone spent another long while with him and - success - whatever didn't work now worked. Terry affirmed the techy guy, told him how much he appreciated the listening ear and the care he'd taken with our problem, he'd done a great job, thanks a bunch. Bye. 

The techy guy responded,"Your words today, they have made me truly joyful." 

You know no American ever said that. It was great. 

We say that to one another at our house now. On very specially thankful occasions. Terry wrote it in a text to me today ...

Terry: On my way to see Puff. (the Dragon = radiation)

Me: Ok babe, praying, you can do it!

.....30 minutes....

Terry: Got 'er done. On my way back to work. 

Me: Wonderful! Now two days off. Just 10 more to go...almost single digits! 

Terry: Your words, they are making me truly joyful.

Ten more treatment days. Terry is just able to eat/drink soup and smoothies these days. A liquid diet is somewhat a relief - no worries about trying to find something that tastes good when nothing tastes good. Just some lukewarm broth and several calorie-packed smoothies per day and we're done.

Terry works his usual half day tomorrow and then goes to bed for the remainder of the weekend - rest and recovery so he can make it through another work week. He is amazing, none of the doctors can believe he is still able to work. He is strong and brave...and really, really tired. 

Thanks so much, friends. Your prayers and good wishes, your thoughtful gifts, kind words and great smoothie recipes all this interminable week have been so sweet, they've buoyed and encouraged us immensely.

Your words, they've made us truly joyful.

Friday, July 6, 2012

the countdown

July, though it just started, seems to stretch out beyond the summer horizon. There are some hot and heavy days ahead. 

Terry has 15 more days of actual treatment over the next three weeks. Weekends he gets off for recuperation. 

Radiation is:
Monday though Friday the 9th - 13th, 
                                   16th - 20th, and the 
                                   23rd - 27th...which is his birthday. 

The last chemo is on Monday the 23rd. The nausea and other side effects I've mentioned are worse the 5-6 days after chemo and then they seem to lessen. They don't go away, but they get better. 

Radiation, which I haven't said much about, is very, very difficult. It's 13 minutes each day when Terry is strapped on his back, unable to move, with a tongue-depressor-like thing as far down his throat as he can get it without gagging and a 'shield' as big as a deck of cards in his mouth. (You don't want to envision this for very long.) Every day it is a challenge to enter 'the dragon'.

The side effects from radiation - very sore throat, 'sunburned' skin on his neck and face, no ability to taste or smell, dry mouth, inability to swallow, enormous difficulty eating, digestive troubles, pain -  are cumulative....that means the possibility of all these side effects getting even worst over the next 15 days is great.

Pause. Deep breath. Whatever our present circumstances we know ...

God is good and faithful. We. Know. 

These are our specific requests so you can pray:

  • That Terry would know and experience the supernatural presence of the Lord each day - especially in the afternoons. (Radiation treatments are somewhere between 2:30 and 3:30PM.) 

  • That the courage and strength he cries out for each day would be real and abundant. It's Terry's intention to finish treatment well. (The actual statistics of those who finish this particular treatment are abysmal. Unfinished treatment means an almost certain recurrence rather than a cure. We're DONE with cancer.)

  • That every sacrificial moment of the chemo and radiation would be effective - that the growth and multiplication of cancer cells would be stopped and that every cancer cell would die.

  • That the side effects would not worsen, but instead - ease. 

  • That Terry's calorie intake each day would be stable and that weight loss would be minimal. (Avoiding a stomach/feeding tube.)

  • That Terry would be encouraged instead of discouraged as he looks at the calendar. Those 15 days seem like forever at this point. 

To address the first 5 with us - just keep Terry in your thoughts and prayers. It matters, we feel the love and strength. 

To address the last one - we are making him a calendar with encouragement, jokes, promises, scripture.... just courage - for each of these last 15 treatment days. 

Would you like to take a day - and send encouragement for Terry? Send me what you would want me to write on his calendar for a specific, or just any day - and I'll make sure those are the words he hears and sees. It'll be on the mirror, in his pocket on a note card, in his journal, on a sticky note inside the dragon's belly...and on his heart by the end of the day I am sure.

Last week friends sent Terry a John Wayne mug - when you tip it up to drink you are able to read, "Courage is being scared to death - but saddling up anyway." He LOVES it, so don't feel like you've got to be serious!

Jokes, kind words, homemade soup, encouraging words, texts, emails. Prayers and scripture. A blanket made by strangers and sent from afar. A recording on our phone answering machine of the HITC staff singing. The Hargrave children praying for Mr. Terry from the other side of the planet. Our nieces and nephews, cousins, brothers and sisters, parents, friends old and new sending love, whacky advice, weird recipes, and even a wig - there's plenty we love about each day. 

All these things and many more help fill our hearts with good things even while they are so effectively emptied, daily, with the ugliness of cancer. 

Don't worry - we're planning on winning. Terry's life, my life, the life of our family will be a trophy, in the end, of the goodness of the Lord. 

Send something if it is on your heart. He'll be blessed. 

"I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living. Wait on the Lord; be of good courage, and He will strengthen your heart; wait on the Lord." Ps 27 - now there's a good one, somebody send me that one. 

Tuesday, July 3, 2012

chemo - round 2

Chemo treatments - not for the fainthearted. 

Here is Terry during Monday's treatment. It was a marathon day...

Radiation first - except "the Dragon" is down for the count, a technician must be called, they send Terry to start chemo at the other hospital and tell us they'll call later to reschedule.

Chemo begins with a visit with the medical oncologist who... 
     asks about all the side effects of treatment, makes understanding noises and good suggestions 
     tells what to expect for the next few weeks 
     schedules a shot of some-thing-or-other to boost the expected loss of white blood cells, says it will hurt, cause joint pain, will be worth it 
     schedules another blood test
     pokes and prods and peers
     answers our questions 
     pats our hands, cheers us immensely with his kindness, makes sure we have his cell number

Down the hall to the 'lounge' for treatment and people watching...

- a blood draw through the port, a long wait for it to come back
     We visit with the nurses we know from last time. They remember Terry and tease him about his new look...Stanley Tucci's name is invoked and compared to Terry and they do the flirt thing nurses do to make you feel better. It makes him smile.  
     We meet a very young 20-something guy in treatment for the first day, his mom is with him, they are both wide-eyed and frightened. He went to get his tonsils out last week and instead got a lymphoma diagnosis, he has a tracheotomy and a very lost look.  He won't be going back to college this fall - with his Stage IV diagnosis he wonders if he ever will.  His mom and I talk about mothering sons and what is important.  Terry talks to him about treatment and choosing to plan for a future cancer-free. They get quiet, begin to just look at us and nod. Are we too 'forward' we wonder later in whispered conversations? They watch US all day and come to shake hands when they leave, the tall momma and the football-player size son, both looking so fragile. 

- a nurse finally starts a bag of saline dripping....the sticky window bandage causes a skin reaction within 15 minutes...the nurse rrrriiiipppps it off and tries tape instead...the tape is hard and uncomfortable and causes the same skin reaction....alarms go off, the drip is no longer dripping...that needle comes out and another goes in...this time stuck with a very expensive, breathable, comfortable bandage - the nurse writes in his chart that he gets this first the next time

- the saline takes about an hour and a half
  The grumpy WWII guy and his geisha-girl arrive, it's his last day of treatment - he's been coming since February. He is happy, but he doesn't have his teeth in today so his face is quite a contortion of what we're pretty sure are smiles. She settles him in for the day with a Tom Clancy novel and leaves for shopping, he never turns another page. He asks, "What are you in for?" to everyone nearby, listens for a moment and then tells his own story again and again. He occasionally falls asleep in mid-conversation...everyone is grateful for nap time and indulgent when he wakes up and begins where he left off. 

- two bags of anti-emetics are dripped in with more saline - they take about  half an hour each
   A breast cancer lady comes in with her husband, she is beautiful with her egg-shell-like skull exposed. She can barely walk.  He looks at his watch a lot and leaves, with just a nod, once her treatment begins. She's done this before, her smile is sad - her pink ribbon breast cancer bag is packed with what she needs, she closes out the room and reads a fat romance novel with a racy cover.
- the cisplatin arrives - we pray over it (kill the bad stuff, leave the good stuff alone) it takes about an hour and a half to drip in. Terry begins almost immediately to do the chameleon change of color, he turns brown like the chair, then grey like the walls. I am praying again...kill the bad stuff, not the good stuff. There is nothing very eloquent in me, just a little terror and some bigger trust which grows. 
   The Texas rancher guy arrives. Alone again, but not in a lot of pain today. He sits by Terry and they talk as his own potions begin to drip. His ranch is near Bastrop and was not touched by the fires last year - he had no way to save his many horses and goats should it have come just a few miles nearer, his ponds and the creek drought-dry. He also works as a farrier and was trained by the Amish a half a century ago. He talks about horses as if they are his only friends.  He is tired and sick and his sister wants him to return to their family ranch land near Fredricksburg to live near her. Theirs was one of the original German families to settle the area, they still speak German when they are together. His great grandfather and great uncles were Texas Rangers and remember the Comanche and Apache. His eyes are far away when he re-tells the stories he has heard all his life under stars, around camp fires.   

- another anti-emetic for about a half an hour
- another bag of saline for an hour and a half
   Terry's exhaustion sets in. We just sit and listen to the stories of the early days of the state we so love and feel we've been given a gift. Wrapped up in a wounded package. 

a phone call tells us "the Dragon" has been repaired, there's no reprieve. We wave goodbye to everyone who is still around and head back to the other hospital. 
  Darby has stayed after 5PM so Terry won't miss a day of treatment. So kind.  

Radiation Day 16 of 34 - done. 
Chemo Day 2 of 3 - done. 

Terry is so tired as he stumbles in at home and to bed, I hate to wake him for drugs and food. 

Side effect hit quickly and powerfully early Tuesday morning. Terry still went to work for a few hours. He still ate and drank, although it is very painful. He is still kind to everyone. He is brave. 

There's much grace at work in our lives. We are so thankful for your prayers, your messages of encouragement and love.

God is good and faithful.