Stories Books and Life--November 2007

November 2007...The shelves are clean this week; dust free, organized. I'm beginning the sort, pack and discard process. The kid's Halloween books have been replaced with Thanksgiving tales of Pilgrims, Indians and turkeys. I can tell the books date back to my own kids because they have "Indians" in them not the currently politically correct "Native Americans." Cancer still tops the list as the most well represented topic on the shelves. Information abaout radiation treatment and side effects is prominent now in my research pile. The Harry Potter books are packed and neatly labeled in a box bound for Ohio. Kevin has a Christian meditations book and Bill's study Bible on his side of the bed and I have the usual stack of cancer research and a Reader's Digest on mine. Both research papers and Reader's Digest are dusty--I fall asleep these days within minutes of climbing into bed.

Motivate or Annoy but Keep Him Engaged

I have been sending Kevin motivational emails.

Not the chain letter, forward this or be cursed with bad luck things.

And not the warm fuzzy hip-hip-hooray emails.

Not even the scripture based Jesus loves you enough to send send you cancer so you can be a better person ones. (and I'll write later about what I'm going to send to the next person who drops another one of those in my inbox.)

These are a particular breed intended to help him push through the tough spots of treatment.

It's a fine line from motivation to Annoy The Piss Out Of Him.

I figure that's ok too; it'll give him reason to fight hard for many future years of paying me back for these emails.

Today's motivate/annoy email:

If you can't be content with what you have received, be thankful for what you have escaped.

Done. Here.

Done.

We said our goodbyes to the clinic here today.

Travis stayed with the kids while I went with Kevin for his check-up and Neulasta injection.

The oncologist was encouraging about his overall health. She outlined what she would recommend for observation once treatment in Ohio is finished.

It was a good visit and I think we parted feeling better about her than when we began. At least we can see where her style is probably a very good fit for other people even if it's not for Kevin.

We went into the infusion area for the injection. It was full, chaotic and intense. This part of the place, the actual office space, will not be missed.

Kevin walked out with no lingering doubts about doing the right thing to move his treatment to Ohio.

Tell Someone What You Need

Kevin left to go to the clinic. Pump removal day.

He left and I jumped into action. Phoned the clinic. Told the receptionist he had hit a wall and waiting endlessly was not going to be an option today.

"He is not going to sit there and wait for no good reason. He doesn't have it in him today. I expect you to see that it doesn't happen."

Kevin strolled in the door 40 minutes after he left, amazed that he had been in and out of the clinic so fast that he didn't even have time to text message me.

Lesson of the day: Sometimes all you need to do is tell someone what you need.

Looking Toward the Break

Going better this round.

The headache is manageable. The neuropathy seems to have leveled out. The cold nerve thing in his mouth and hands is as weird as ever but not over the top.

He feels more encouraged and in better spirits.

There is an end--at least a break--in sight.

Cycle 2-15, Tired Times

I closed the daycare to be able to go with Kevin to today's chemotherapy.

We slid into the lab plenty early with the hope of cutting his stay in the infusion suite. Once we were sitting in the waiting room of the oncology clinic, we waited. And waited some more. I realized from unabashedly listening to the discussion of a nurse and the receptionist that Kevin's lab results were missing. The lab claimed to have FAXed them over 3 times, the receptionist didn't know where they were.

I was ready to point out the obvious--the lab is 30 feet from the oncology clinic, I could walk over and retrieve a copy of his blood counts and be back in less than a minute. Thankfully, the nurse intervened beyond the receptionist and got her hands on the missing labs.

Communication, again, appears to be lacking at the front end of this place.

Almost an hour late, Kevin began his last treatment here. YAY! Last treatment here and a wonderful and needed month break before he begins treatment again in Ohio.

It was a long day and I was glad we hadn't committed to being home before the girls got out of school. I hope the un-necessary waiting is not part of our experience in Ohio. It really increases the burden for Kevin.

He's anxious about the side effects this time. He was hit pretty hard with the third treatment and was just beginning to feel better when today rolled around. Tonight he has a headache as usual and the cold sensitivity is strong in his mouth and fingers.

I think he will sleep though. He's very tired and is already nodding off on the couch.

I am thankful to be seeing the end of this treatment period. He's done amazingly well but it's been a hard time for him and he's tired.

Making Goal

Sunday night after our 4 day Thanksgiving weekend.

We did the family meal. We did the day after shopping. We went to a movie.

We took a nap. Then another one. Kevin cat napped off and on throughout the weekend. The extra days off before this treatment have been a boost to his body and his morale. We are over the bump of defeat for the moment.

This evening we came back to real time and began the preparations for chemotherapy tomorrow. Nair around Kevin's port to ease some of the tape pulling. Pack a bag with a snack, juice and a couple of water bottles. Gather up something to read for the 3 1/2, no 5+, hours we'll be at the clinic. Write a check for the co-pay.

Getting ready for another chemo knock-down is always a little depressing. Kevin is just starting to feel well again and it's time to beat him down once more. It's easy to get caught up in the disappointment.

Kevin is feeling positive tonight though. He's accomplished a goal. After the weeks of indecision about chemotherapy he made it a goal, a promise, to get through these 4 treatments. This week he will have done that and done it well. He is still on his feet and thankful.

Generous Prayer

We took a little time away from the family/shopping/eating focus of the weekend. Curled up together for a nap and some time to talk about the many blessings in our lives.

It's easy to be so caught up in what's wrong, what we regret, that we forget all the reasons we have to give thanks.

We read through many of the note cards filled out for the prayer pocket of Kevin's blanket. Prayers, jokes, scripture readings, poems. Wonderful gifts from many people, known and unknown. Friends and friends of friends. The chaplain and inmates of a state correctional facility. Family.

Their prayers for Kevin and their prayer requests.

These gifts of prayer--and the opportunity for us to pray for their needs--are truly a blessing this year. We are thankful and humbled to receive such generosity.

Giving Thanks

Thanksgiving Day.

We spent a quiet day with our girls, their boyfriends and my sister and brother-in-law. Went to Mass at St. Tom's. Shared a wonderful meal, played the Wii game and listened while Kate and James played the guitar.

Kevin napped off and on throughout the day. He's very tired; I'm glad the holiday schedule allowed him to postpone this week's chemotherapy until next week. He did feel well enough to eat dinner with us; even though he can't taste too much right now some things get through his drug stunned taste buds.

Even with the unexpected upheaval of cancer in our lives, there is much to be thankful for this day.

Tough Love

Kevin is frustrated and upset by the continuation and intensity of side effects. He wants to quit treatment.

I am alternately concerned about his health, physical and emotional, and annoyed that he wants to pack it in at the first sign of real adversity in this battle.

Harsh words I know. It's time for some tough love around here.

It probably looks on the outside like it's easy from my side of things to tell him to suck it up and refocus on the goal. To remember the one thing I asked of him in all of this: If you begin treatment, please finish at least these first 4 treatments. Do not make me worry that you have teased any microscopic cancer cells by merely wounding them. I do not want an antagonistic retaliation of wounded and angry cancer cells in your body.

Stupid reasoning. Possibly. But mine.

It's not easy. Certainly not for him. Not for me. While Kevin's fight is obviously on the front line, I wage behind the scenes battles of my own.

I have been the bearer of bad news for this man for more than 3 months. I would like someone else to be the bad cop for a while.

I remember that he began this part of the journey by acknowledging that he is a rule follower. That he will not feel he's done the best he can do for himself, for us, if he regrets not following the best advice of those that know, his doctors.

I can encourage Kevin by agreeing with how bad he feels and giving a non-committal acquiescence to his desire to stop treatment. If I do this I ignore how he feels underneath the surface of side effects, who he is.

Or I can encourage him by agreeing with how bad he feels and reminding him how strong he is; that he chose this knowing it wouldn't be easy but believing it was the best chance for him--for us, that he has the prayerful support of many people and he can let those prayers, this grace, carry him through the difficult times.

I opt for the tough love approach. The bad cop again.

I play my big card and remind him there is one more treatment to go in his promise to me.

I know my husband.

His biggest fear isn't cancer. Or chemotherapy and its side effects.

His biggest fear is disappointing me.

Tough love for both of us.

Kevin is back in Ohio tonight.

He gets an extra week off treatmen this round. Only because the clinic wants to close early on Wednesday and he couldn't be worked into the schedule.

He's not complaining about the extra week.

It's turned out to be a real blessing. The side effects have not abated this round, in fact they've increased. It was a discouraging and tiring weekend for him.

He's tired, he's angry, he's discouraged.

It will be good for him to have the extra week off and the long holiday weekend to rest.

The Price of Laughter

As we walked into the clinic yesterday Kevin tapped on a small sign taped to the door.

"Doctor has added a new photo to the gallery. Be sure to look for it."

Kevin rolls his eyes.

I know the money priority approach of his care bothers him. Insurance card? Co-pay check? Butterfly photo? Would you like a card with that? $5.50, thanks.

Knowing his care is costing a small fortune--his small fortune--leaves a bitter taste in Kevin's mouth that rivals the taste left by chemotherapy drugs. Knowing there are so many people who can't afford the care simply makes him ill.

One of our more irreverent friends refers to Kevin's clinic visits as "gallery walks."

"What's new in the gallery this week, Kev?"

Our conversations deteriorate into observations of what kind of care upgrades Kevin might get if he made a small investment in art.

"Kev, if you would just lay out "$5.50 for a card, I'll bet you could get a soda that's NOT refrigerated."

"Your wait time could be cut in half if you dropped $30 for a matted photo."

"A framed print will get you a guaranteed remission. Now."

Kevin laughs and lets go of the annoyances and worries. THIS is priceless.

Mid-Treatment Check-up, 3

Check-up day again.

Kelly came to stay with the littles today. Once again Haylee stole the show.

It's easy to get helpers who want to come back. The kids are all great and listen well, but Haylee is positively entertaining and my family has fallen in love with her.

He was seen by the nurse practitioner today. Nothing new going on. He's a little more smooth with the questions. Makes them more of a statement. Not 'are you having any neuropathy?' but 'how bad is your neuropathy?' He listens to Kevin then looks to me for confirmation. I think the NP is double checking to be certain Kevin isn't feeling worse than he's willing to say. I appreciate that sort of intuition and attention for Kevin. Truth is, even with how miserable Kevin feels, many people are much more sick on this treatment. The NP is surprised by Kevin's endurance.

Kevin cringes when he thinks about that--he knows how rotten he feels and has great compassion for those people who do not tolerate it as well. If he feels this bad and is doing this "good" then how awful must the people doing "bad" feel?

Kevin laughs when the NP asks if he's "managed to work any" during treatment and Kevin says he's not only worked every day, he's driven to and from Ohio every other week. Alone.

We suspect that Kevin on chemotherapy is putting in far more work hours than the NP.

Kevin has been amazing though. His faith has been strong and he has work hard to keep his body and mind strong too.

Midnight Prayers

My phone rang shortly after midnight.

It was Kevin.

"I can't go to sleep for the night without our goodnight."

As usual, I fell asleep while he recited the prayers of The Rosary.

I didn't even worry about it when I woke up later. It's our normal. It's Kevin's way of taking care of us.

My prayer this morning is simply "Thank you."

This Time Will Pass

Kevin called from Ohio as he crawled into bed at 7 PM.

He's annoyed that the side effects have not subsided this week as with earlier treatments.

The headache is constant as well as the underlying nausea which accompanies it. He just feels rotten all over. Everything hurts. He manages to heat up the meals I prepare and send over each week but knows if he had to shop and cook for himself it would be easier to simply not eat.

And nothing tastes good. It either doesn't taste period or the growing nasty taste in his mouth overrides things.

He eats on schedule though. Snacks in mid-morning and mid-afternoon to hold off the nausea. Keeps up with the tylenol. Drinks 3 or 4 liters of water a day to flush the chemotherapy drugs from his system.

I admire his tenacity and his commitment to stay as healthy as he can through this. It is truly a monumental effort. I tell him so constantly.

We usually end our evenings with a phone call and prayer but this week he is simply too tired after the long hours at work and falls into bed soon after his supper. We miss our prayer ritual but remind ourselves this is a temporary thing.

That's the prayer this week. This time will pass.

Chemotherapy Primer III/ Rest & Recovery

This is Kevin's week off treatment. An opportunity for his body to recover a little.

Cancer treatment is a balance between allowing his body time to heal enough to keep him going but not allowing enough time for the cancer cells to fully recover. Eventually the repeated onslaught of chemotherapy kills the cancer cells entirely.

Chemotherapy targets rapidly dividing cells--cancer cells. Unfortunately, there are healthy cells that fall into this category that are also killed or damaged by chemotherapy. This is why many chemotherapies cause hair loss. The good news is that healthy cells recover faster than cancer cells.

So a rest period between treatments lets more of the healthy cells recover while the cancer cells don't recover as well. Eventually the continued weakening of cancer cells kills them faster than they can multiply. The cumulative effect of chemotherapy shows up in ongoing side effects (by damaging healthy cells too) but that accumulation is what ultimately destroys cancer cells.

It's a vicious circle.

Kevin's chemotherapy furthers this concept by using a portable chemotherapy pump to deliver a continuous small dose of a drug over several days. This lessens the damage to healthy cells while killing more cancer cells.

Before Kevin began chemotherapy we used to explain this by saying the plan was that by the end of treatment all of the cancer would be dead and Kevin would be no more than half dead. Now that he's in the midst of treatment and increasing side effects this is more reality than we like to think.

Re-evaluating My Treasure

"For Where Your Treasure Is, There Also Will Your Heart Be."--Matthew 6:21

Couldn't sleep tonight. I'm still trying to wrap my mind around the idea of closing the daycare, leaving our home, our family and our friends to move to Ohio.

When I let my mind take off with the idea of moving it's easy to get caught in the idea that I am leaving behind much of what I treasure, much of what defines who I am. My job in the daycare, our daughters and grandson, the children we have come to be so close to, friendships that have lasted through decades, St. Toms, a growing local photography recognition.

And then there are the things. The stuff accumulated in thirty years of making a home and raising a family. Culling it down to a manageable level sometimes feels like a choice between the memories that have shaped my life and practicality about the future.

It feels like I am leaving behind my heart.

Then I think about Kevin and I. What we have always been for one another, what he needs from me right now.

We are at a different place in life than we were as parents raising our family. A different place than we were even a few short months ago.

I see treasure in a different way than in the years of our youth, or as parents or even recently as emerging "empty nesters." Cancer forces me to remember what is just stuff and what is eternal treasure.

A New Level of Anonymity

I am the wife of the guy with cancer.

I do one art show a year. It's a benefit show for the library in the town where I lived some 30 years ago. The show generates around 60K in sales for the library. The Santa figures generally claim their share of Purchase Awards.

Artists don't handle sales. We're supposed to walk around, make nice with people and chat about our art.

I do more watching and listening than chatting. My official name tag stays in a pocket and I usually keep my invisibility cloak in place.

Last night I listened in the background while a group of people discussed this year's Santas. I'm used to the guys generating a lot of 'oooo' and 'ahhhh' response.

I moved in a little closer; all the better to hear the compliments roll...

"Do you know the woman who makes the Santas?.....I'm not sure who she is but her husband has cancer...."

My family still lives in town. I'm used to being my sister's sister or my father's daughter at this show.

This year I'm the woman whose husband has cancer.

It's a new level of anonymity.

Two Worlds Collide

I understand George Costanza's fear.

Kevin's two worlds collided in our house today.

I've never really had much contact with "work Kevin." I get "husband Kevin." Even if I'm visiting Kevin at work I don't get "work Kevin." I had concluded that "work Kevin" was much the same guy as "husband Kevin."

Not so.

I should have known better. I've had hints. A slip of a conversational f-bomb when he's hung out with the wrong boys on a too long project at work. An rare bark of directions instead of requests or suggestions.

Work Kevin showed up this afternoon. The kids were napping. I was working in my office, Kevin was next door in his office on a conference call. "Sitting in on someone else's meeting" was how he put it.

With the speakers on, I could hear all sides of the discussion. And it was obviously going in circles with everyone talking and no one listening.

Enter "work Kevin" who suddenly spoke up out of nowhere and took over the meeting he was just "sitting in on." Completely hijacked it. Started giving orders and assignments. Using his loud voice (when did he get that??) and not letting anyone interrupt (say what?)

I had to get up and look into the room to convince myself it was really Kevin speaking. Our girls would never believe me.

I scribbled a note, slipped into Kevin's office and slid it across his desk.

"Wow. Let's play "boss" tonight. I'll let you lead."

He stifles laughter. Oue eyes meet and I know things will be ok in this collision of worlds.

Day Three. Again.

I couldn't get anyone into the daycare today and we decided not to close it for the day when, in theory, it shouldn't take more than minutes for Kevin to get the infusion pump removed.

He text messaged me for 90 minutes from the clinic. Ninety frustrating, wait and listen to the pump beep minutes.

After multiple visits we've concluded the problem on the infusion side of things is staffing. Too many patients or too few nurses. The nurses there don't waste time or goof around. There just aren't enough of them to go around. And if one of them is out for any reason, things really topple quickly.

He's not feeling great this round. And the smell of the clinic adds to his nausea. I am, once again, annoyed that it's the things that don't have to be which most add to his struggles.

Treatment 3, Day Two

Cycle 2-1, Day Two

This has been a rough one for Kevin.

He feels rotten. Achy, tired. There's a growing nasty taste in his mouth and the tingling is increasing in his hands. He was glad to kick back and rest at the end of the work day.

He's adapted his nights well to managing the chemotherapy pump, but the work days are occasionally tricky. He'll pace during a call with the pump sitting on his desk. If he moves just beyond the reach of the IV tubing, he's jerked back like a dog on a chain.

I know he's getting frustrated with the constraints of treatment and the growing side effects.

Cycle 2-1; Warm Drinks

Chemotherapy #3.

Kev was dragging his heels about going today. It made me sorry I hadn't scheduled things so I could go with him. Leaving someone in the daycare for an entire day is a little hard for the kids and the sub so Kate arranged her day to be at the clinic with her dad.

Each time it gets a little more difficult for Kevin to get himself into the clinic. He says the smell of the place makes him want to vomit when he walks into the infusion area. He doesn't want to share that bit of information with the doctor because he doesn't want to be pushed into taking another drug to control that nauseous anticipation.

He doesn't ever vomit; just feels the nausea out there somewhere on the rim. I'm very proud of how hard he's worked to overcome the anxiety nausea and drug nausea without taking additional drugs. We both think it's kept him healthier overall. And we agreed that he would take something when he decided he couldn't manage it on his own. So far he hasn't gotten there.

Kevin spends the day texting the waiting periods to me.....my phone beeps a text alert..."waiting for chemo drugs"....30 minutes later..."still waiting"...20 minutes later another text alert...."infusion started"......3 hours later....."waiting for someone to set up pump"....

In the meantime we deal with the real-time aspects of chemotherapy. The cold sensitivity is strong in Kev's mouth and fingers now. I get a text message...."do you think I'm the only patient here who gets Oxaliplatin? I mean, wouldn't they have some NOT refrigerated drinks if there's more than just me?"

I text Kate to tell her I've put some drinks--not refrigerated--in her dad's computer bag. THIS is something we can fix.

The Hard Drive of My Heart

We've got a rather short term 'tradition' going of me taking a photo of Paige and Josh sometime in the fall for their Christmas card.

Today they came up and we went out to take some shots. The leaves aren't quite up to the usual Indiana standards of brilliant this year because of the drought this summer. And they've been slow to fall which worked well in our schedule. This is the first day we've been able to work this out and I expected a backdrop of sticks this late in the season.

It was a beautiful day. In spite of feeling tired and achy, Kevin enjoyed being outside and walking in different surroundings. He and Josh walked up to the old covered bridge at Adam's Mill then explored around the old mill itself.

I love watching them walk along hand in hand; Kevin's head bent down to hear what Josh is saying, Josh looking up as he imparts his 5 year old wisdom to his grandfather.

We ate lunch was at a local small town diner. Kevin's taste buds are taking a chemotherapy beating these days so things are beginning to taste strange to him. Having lunch in a new place with the distraction of Josh's chatter helped to minimize his awareness of chemo-taste.

I looked through the photo files tonight--Paige and her dad walking and laughing, Josh and his grandfather hand in hand, heads together as they examine a wagon below the mill, Kevin showing Josh how to skip a rock across the creek. One hundred and fifty-seven memories stored on the external hard drive of my computer.

One magic day stored in my heart.

Mid-Treatment Check-up

Mid-treatment check-up.

Travis came over to stay with the littles this morning while I went with Kevin. We are so appreciative of the way our family has come together to help and the patience the daycare parents have shown with our tag team of caregivers.

He and Gina don't have children so I was a little worried about how he would do with the sudden immersion in a herd of littles.

No one came to harm and he left with a few good stories.

Haylee wowed him--as she does nearly everyone--with her vocabulary and observation.

Kevin is doing well. The oncologist didn't really have much to add. I did notice that she asked him questions then watched me while he answered. I think she's trying to gauge if he's holding out and feeling more miserable than he lets on. She is better in these "encounters" than we expected; more personable, unrushed and interested in how he's feeling physically and emotionally.

She even asks how his caregiver is holding out and reminds us it's a mutual effort.

Sometimes I wonder if she knows how disruptive things seem around the corner in the infusion area.

Peaceful Noise

I woke up early this morning and went to sit in the backyard.

I love autumn in our yard. It's my favorite time of the year. This year I want to savor it, to bask in it and save some pieces of it to take out another time in my life.

I'm not certain there will be another autumn in this backyard. At least for me. There will be a different backyard with different pleasures.

Today I listened to the not-so-silence of the autumn yard.

No people to be heard. No cars or trucks. No phones.

The wind gently moving leaves high in the trees. Birds singing. The crunch of fallen leaves underfoot as I walk to the swing. The quiet creak of the chains as the swing moves back and forth. Water falling over the edge of the upper pond. The splash as a frog dives in the water.

Later today the yard will ring with the giggles of children. The screams of delight. The "AH!" of discovery. Loud tears kissed away to quiet snuggles.

Our backyard is an oasis. It's not a solitude of silence; it's a delight of peaceful noise.