Shoulda beens...

The end of May. It's late tonight--the VERY end of May.

The school year of daycare should be ending. And the summer session--relaxed in rules but hectic in activity--should be beginning. Kevin and I should again be debating the "when" of moving me permanently to Ohio, the pool should be filled and the beach towels brought down from the attic.

My weekdays should smell of bugspray and sunscreen, there should be a growing supply of used popsicle sticks next to the sink and an ongoing stickiness to the little hands that hold mine on walks.

I should be organizing photos for the county Open Show and gritting my teeth while helping Madi and Hannah with their 4-H sewing projects.

Tonight I was aimlessly thumbing through a collection of scripture passages while thinking about all the "shoulds" I expected life to be at this time. When I looked down at where my restless fingers had landed I found:

"To everything there is a season, a time for every purpose under the sun..." from Ecclesiastes.

Even our unspoken prayers are heard.

One More...

...and chemotherapy will be OVER. Finished. Fait. Terminado. Done.

Kev is feeling ok this go round. Not good, but not hideous either. We were warned this round and the next one would be hard ones with all of the cumulative side effects building up. He's got that nerve damage tingle going clear up through his wrists now and he drops a lot of things.

Nurse came around 10 this morning to de-access his port. The tension always builds up as that time gets closer and then it's done and he starts to decompress.

Talked to his oncologist about how soon he can get the port removed after his last treatment. She agrees that it can come out as soon as the last treatment is finished. I've already scheduled a date in July with his surgeon in Lafayette.

If I wasn't a quiet conservative Catholic, I would shout "Praise the Lord!" Sometimes the Evangelicals have it all over on us.

Groundhog, er, Chemotherapy Day, Again

Yesterday we admired the newly planted flowers at the clinic. The girl scouts had planted them and the nurses were now lamenting that someone or something is pulling the flowers from the ground.

Having some familiarity with destruction in the garden, Kevin and I positioned ourselves to watch during his infusion.

Didn't take long before we were able to ID their culprit.

There's a certain irony in having a groundhog inhabit the garden at the cancer clinic. Remember the movie "Groundhog Day"--the guy had to keep repeating one day over and over, learning a little from each repeated day?

Chemotherapy keeps our life in a sort of GroundHog Day-esque sequence.

We count our days off in two week intervals around his treatments. Repeat (somewhat religiously, almost fanatically) what works, learn from what doesn't, get through it, wake up on any given day in the sequence and predict how it will go--'Day 4 after treatment, expect'....Repeat each day again every two weeks. You don't want to let go of what works and sometimes you can't get away from what doesn't.

Like Bill Murray's character in the movie, sometimes Kev thinks about a day from the past..."...THAT was a good day. Why couldn't I get that day over and over and over?"

Eleven and Counting

Chemotherapy day. Again. Kevin is alternating between work and sleep here at the clinic. I am doing my best guard dog routine as I watch over him, double check medicines and schedules with the nurses.

Kevin would have liked a little encouragement to cancel today's treatment. He's tired of it all--the always present sick feeling, the bad taste in his mouth, the nerve damage in hands and feet, the fatigue.

We sat out in the garden of the clinic for a few minutes before his infusion was started. I always wonder what he's thinking when he sits there like that...who he sees reflected in the water after a year of so many changes.

"Behold! The Forbidden Closet!"

I think I've been out smarted.

The Forbidden Closet is no more.

Kevin decided to clean the closet today. I expected the thing to be full of dragon dung, but all he pulled out were files, boxes and bags.

Found the rest of those tax files he had saved with his finely tuned bag & box system.

He moved the sweeper back to the closet. Right up front. Nothing to move. All I have to do is reach in and get it.

Yeah, right.

Summer Shopping, City Style

Kevin is munching on olives tonight. Gorgonzola stuffed olives. He doesn't find a lot of foods he can actually taste theses days so he's a happy camper when he hits on something.

We went to Findlay Market today. Kev found the olives there amid the assortment of ethnic food stores, butchers, bakers, produce vendors and more. He has big plans to return when he is done with chemotherapy and his taste buds and blood counts have improved enough that he can really sample the offerings of the various delis and street vendors.

Findlay Market on a sunny Saturday morning is a cacophony of sights, sounds and smells. We didn't take our market bags in with us--probably a lucky chance because we would have bought far too much if we could have carried it! As it was, we limited ourselves to Kevin's olives and some warm cookies. And people watching. This is a great place for people--vendors, street performers, moms with babies strapped across their backs and toddlers tagging along behind them, young men following their little old grannies and carrying their bags and baskets of flowers.

Kate would be in her element here. It's a very Kate sort of place. She would wander through like Norm from Cheers--being greeted by name and knowing most of the regulars.

The Over-The-Rhine area is about as inner city as it gets in Cincinnati. I think a lot of our friends would be scared to drive down the streets there, let alone get out and shop. And if you come from a very large city yourself, there may be nothing unique about Findlay Market; I don't know. But it's unique in my experience and I love it. Sights. Smells. Sounds.

Forget King's Island Amusement Park. If you come to visit us, we'll take you to Findlay Market.

findlaymarket.org

May Days

Four deer were in the meadow when I stepped out the back door this morning. They stare at me, I stare at them. We both know the game--they hang out in broad daylight so I can be amazed by their presence and fill the feeders again. They empty the feeders. Both sides know how it works; there are no surprises.

What is surprising is that Kevin walked home from work for lunch yesterday and again today. Walking has a teeter totter impact on him. He feels better and his body recovers better when he has a good walk each day. On the flip side, the effort just wears him out now with his blood counts being so low.

His internal thermostat is a little skewed too. Hot when he would normally be cold and cold when he would usually be sweating. So it's a little funny to see him trotting up the road wearing his heavy coat and gloves in late May.

He's definitely felt better the last couple of days but I still think the visible sweeper is a sign of a pending eruption from an overstuffed Forbidden Closet.

Clean or Closet?

Something's going on with Kevin and The Forbidden Closet. (see early January 2008 posts if you are unfamiliar with The Forbidden Closet)

The sweeper is in the laundry room. I think it's been lurking there since sometime last week--I've noticed something sort of "off" about the room all week. Today I realized the sweeper was parked in there next to the furnace, sort of just under my "mess" radar.

And my jacket in hanging on The Closet door. For 5 days.

It's possible that Kevin is feeling much better. Well enough, in fact, to attempt a takeover of the mangement (or lack thereof) in our home.

(Rookie. He should know that parking the sweeper where I have to step over it everyday isn't likely to motivate me into using it, let alone parking it in some dark corner next to the furnace.)

Or--and this is the most likely scenario--The Forbidden Closet is now full to bursting and even Kevin's afraid to go inside.

Operating in FGM

Kevin's feeling better tonight.

I can tell because he's operating in Full Geek Mode.

I suspected as much when he was kicked back on the Man Couch, computer open across his lap, blue tooth headset inserted in one ear..our house phone rang, he said "that's me" as he answered it. Then he proceded to have a little conversation with himself via land line, cell phone and computer.

There's a simple test to confirm FGM. I picked up my camera, asked him to repeat what he had just done with phones and computer. When he not only repeated the multi-communication conversation with himself, but allowed me to photograph the event, I knew it was definitely a full throttle geek moment.

It's good to have him back.

Window Peeper, Part II

A few weeks ago we had a morning window peeper. Given my rather boring days, I briefly considered putting the peeper on a regular schedule of visits and having him fill out a W-4 for payroll deductions. This plan was squelched when I realized my peeper was a little squirrely. As in gray squirrel. Rodent.

Apparently the word has gotten out in the wildlife world that we're an easy mark. The last week or two has brought a nightly raid on the feeder at our window. Sometimes there are repeated raids in one night over the course of several hours. And the guy is bringing friends. Two and three at a time. Morning light brings a mess of toppled and empty feeders.

Given the nocturnal nature of the raids it's been hard to get a photo. Last night, though, we set up a little sting operation and caught the ring leader in action.

I'm expecting a woodland picket line out on the back porch soon. The squirrels, the downey woodpeckers and the raccoons all marching for feeders endlessly filled with $12 a bag "Fruit and Nut Delight."

I wonder if Buckley Brothers has a frequent fillers program.

Weekend Visitors

Visitors twice in one month! If this keeps up, the place will be cleaned and dusted most of the time and I'll have to miss part of the daytime TV line-up.

Kelly and Tejas spent part of today at King's Island then we took them over to the gorge at Caesar Creek--Kevin's favorite walking spot the weekend after chemotherapy--and went to dinner on the riverfront.

Tejas had never been over here before so it was fun to show him around. And Kelly's stays have always been for a specific purpose so this is the first chance we've had to really take her around too. They got a kick out of the nightly raids by the raccoons. Tejs hasn't exactly been immersed in wildlife and he found them sort of scary/fascinating.

Kevin is tired after the full weekend, but we both had a great time seeing things through new eyes.

I Won...

...the Recreation division of the Rural Matters Photography contest sponsored through the Indiana State Office of Community and Rural Affairs.

I entered the contest in March and just slid in as I gave up Indiana residency in April. Then I forgot about the contest until an email came today from the Lt. Governor's office.

I entered 4 photos in different divisions of the contest and won in Recreation with "Summer Leap" a photo of one of my former daycare littles--Travis Blackburn--taking a running leap into the lake at my sister's farm.

Josh was greatly offended when his mother let him know I had won with a photo of another little boy.

"Is it a picture of me?"

"No, Josh, Grandma used a picture of another little boy this time."

Silence.

Then, "Are you SURE? She ALWAYS uses a picture of me."

At least this time he didn't congratulate me for being the "first loser." (See September 2007)

Fifteen Minutes...

...at the feeder.

Me, a sunny day and 15 minutes of bird feeder fame.

Took my camera out back this afternoon and decided to photograph the different varieties of birds at the feeders over a 15 minute period.

It's not rocket science, but it keeps me from turning to crime to fill my days.

The Finer Points of Definition

Grading Kevin's side effects is an art form of it's own.

Sometimes I ask and get a paragraph with complete sentences. This means he has a lot going on but he still has the energy to talk about it.

Sometimes I get short simple words. "Head" "Stomach" This means just the effort of answering adds to the pain.

"OK." tells me I want to pursue a little more detail. Usually it means he feels rotten but he thinks he whines too much so he doesn't want to say he feels rotten. Sometimes it means he's felt marginally rotten long enough that there just doesn't seem to be any point in visiting the situation yet again.

Tonight's how-are-you-feeling exchange went like this:

"How are you feeling tonight?"
"Like crap."

This is a definite improvement over the days when he answers"like shit." Things are looking up.

Time Out Before the Eleventh...

And Cycle Five draws to a close.

The wonderful Pam came today and the infusion pump is back in the closet for another twelve days.

I view Pam as a sort of lion tamer. Just when Kev has about reached his limit (sometimes a little beyond that), Pam arrives to subdue the beast. Not Kevin. The infusion pump and all of its hated associations.

Doesn't make the side effects go away for Kevin or even render them immediately improved. But it is a signal of having completed one more step in the process, a small indicator that this, too, will pass.

In that varying way side effects hit, he's feeling a little worse today than yesterday. Didn't eat much lunch and slept hard for an hour afterwards. Nausea is creeping in and the headache that always accompanies a treatment is more intense today. It's a toss up as to whether the nasty taste in his mouth contributes to the nausea feeling or whether the underlying nausea contributes to the nasty taste in his mouth.

We take our victories, though, where we can get them. Today the beasts of infusion pump, IV tubing and skin irritating tape have been bested for the tenth time. Tomorrow he gets a Neulasta injection and then 10 days to recouperate before it's time to go again.

The Landscape Formerly Known as "Lush"...

We were laying in bed this morning, admiring the jungle-like lushness of the woods outside our window, when I noticed a hummingbird flitting around the flower basket.

Happy Day! Deer, a multitude of songbirds, raccoons, a couple of groundhogs, the occasional skunk and now a hummingbird--all strolling along 2 feet out our backdoor.

My gloat about the abundance of nature here in our little sliver of Ohio was cut short when I took a good look at the flower basket the hummingbird was visiting. The huge peachy pink begonias were...gone! The ivy leaves...also gone! Impatients, some unknown blue flower and sticks...the sum contents of my formerly lush flower basket.

$20. Kev paid twenty bucks for that flower basket. I think the deer are paying me back for griping yesterday about the $7 worth of corn they consume each week. Seven bucks worth of corn is a bargain price when weighed against a twenty dollar flower basket.

I'm working on a way to get my name and address stamped on the deer. If a local hunter bags one this fall, I want it clear that I have a prior investment in the thing.

Top of the Tenth

Chemotherapy day again. Tenth treatment, day one, aka Cycle 5-15.

We are at the clinic. MaryAnn got things going for him today...access his port, draw blood to make sure his counts are high enough for a treatment, get the pre-meds that hold off the worst of the nausea and possible allergy reactions, then start the chemotherapy drugs (Leucovorin and Oxaliplatin) before the 5-FU "push."

Kev is physically and emotionally sick & tired of chemotherapy so the

"F-YOU" aspect of 5-FU is strong today.

He's napping now with about 45 minutes to go in his IV infusion. Then he gets the 5-FU push and the hated infusion pump is hooked up for the next 46 hours.

So we are already focused on Thursday, May 15, around 10:30. That's about when the pump will be due to come off. "De-accessed," as they say.

Spring has arrived in the garden here at the clinic. Azaleas and bleeding hearts are in bloom with Japanese iris in heavy bud.

As I walked back from the garden, I overheard the celebrations of a family we've seen off and on through Kevin's 5 months here in the Ohio clinic. Their patient's cancer has shrunk to being "non-detectable" which means the treatments are working. Not finished. No guarantees. But "working" is cause for laughter, hugs and a discrete happy dance by a tired looking daughter of the older patient.

Cancer creates it's own sort of social network and bonding. As I walk back to Kevin's cubicle, I notice the impact of the news--"non-detectable, working"--on the 7 other groups here today. No one seems to know any of the other groups by name; we identify through weeks and months of nods and brief comments on side effects and weather and the knowledge of common experience.

Yet, today, 7 groups of strangers are joined together for a moment of smiles and whispered repeats of "they have good news...non-detectable...it's working..." There are nods of heads and smiles exchanged as we catch one another's eye.

Spring has, indeed, sprung at the cancer center. New life and new hope abound.

Not Enough Time

Everyone raising a family or working or just getting through life knows the crunch of not enough time.

With living far from family and old friends we've grown a whole new appreciation of "not enough time."

Trying to see everyone we want to see on our rare weekends in Lafayette is next to impossible. Not enough time.

We missed seeing the precocious Miss Haylee and her family this weekend. Haylee is the Bubble Fairie pictured on the right hand side of my blog. And she's amazing in a whole lot of ways other than just being The Bubble Fairie.

Haylee is lightning in a bottle. Energy.

Haylee became Kevin's best buddy last fall while he recouperated from surgery and began chemotherapy. She was the perfect mix of cuddle buddy and down to earth, call it like she sees it, three year old common sense.

I know he misses hearing "Daddy Kevin, your purse is bee-you-tee-ful! I love it!" when he comes home with the infusion pump. She brought a lot of laughter to those moments when he was really feeling down.

We'll remedy this on our next visit. Haylee and family will be at the top of our list. For this weekend, though, we felt that age old pinch of not enough time.

Coming Home, The Bitter and the Sweet...

We're in Lafayette tonight. Going to my sister's farm tomorrow for Mother's Day.

We called Rose and the kids after Mass...they were already at our hotel and in the pool, waiting for us to come back! Andrea had a tearful day at daycare this week when she was feeling sad and missing us. So it was important to spend some time with them while we were in town.

We definitely scored a hit by staying at a hotel with a pool.

St. Tom's was good. Great, in fact. Reminders of why we miss it so much--the people and the liturgy. Our friend Gene is in the hospital waiting to begin dialysis. It was heart breaking to see her husband Ed try not to cry while he updated us. They are extra special and have been in our prayers and we'll definitely increase the effort.

Coming home is a lot of bittersweet moments. The friends, the warmth, the familiarity on the one hand and the reminders of what we miss on the other.

Thirty-three Years or Yesterday

Kevin's college roommate and his wife came to visit this afternoon. Thirty-three years since the men have seen one another!

An interesting facet of cancer--some people are frightened by the reality and disappear from your life. Some people, though, return to your life after long absences. It's like a reminder that we can't put off things forever because one of these days that "forever" marker is going to come due.

The impending arrival of visitors meant a little bit of house cleaning had to occur. I tackled the layer of dust once I convinced myself that I couldn't pass it off as some sort of nifty guestbook where they could sign their names and the date of their visit.

Kevin wrestled his way into--you guessed it--The Forbidden Closet and emerged with the sweeper. I didn't even try to peek in the Closet as I was in full combat mode with the dust bunnies.

It was nice to meet Mac and Nancy after all the years of the Annual Christmas Letter exchange. They were on their way from Georgia to northern Ohio to visit family and only stayed a couple of hours with us. The men didn't get around to any college reminiscing but we did catch up on more recent times of parenting our kids, our parents and ourselves. Turns out their adult kids are every bit as human--albeit perhaps not as colorfully human--as our own.

Tomorrow early we head to Indiana. Soccer with Josh in Indianapolis then on to Lafayette for Mother's Day weekend.

It's in the Details

We're having company tomorrow. Our first real guests beyond our kids. And I've never met them. Kevin's college roommate and his wife.

Those first three lines would normally motivate me into sleepless action for the next 18 hours. There would be fresh flowers on the entry table, cutesy handtowels hanging in the bathroom and newly ironed sheets on the bed in the guest room. For guests who are not spending the night. I would have changed the sheets.

Just in case.

I made two lists--I like lists. They are at least the equivalent of having a plan and we all know how much I believe in having a plan. Marked off lists are even better; the tangible proof of a plan in motion.

The grocery shopping list is completed. It has a satisfying red line across each item.

The "do" list is suffering from neglect. The only red lined items on it are "make grocery list" and "grocery shopping."

And I'll admit I added both after the fact so something would be marked off the "do" list.

A year ago this would have sent me into a panic. I think. I never actually let a list be so undone so late into a plan and I'm only guessing it would have caused me to unravel.

The new me in our new normal isn't too worried. The essential things will be essentially done. The non-essential things might get a look over. And it will all fall into place one way or another.

It's a little frightening to live inside this new me. I keep waiting for some sort of "OHMYGOSH" moment to zap me into action. Maybe in the final hour before our guests arrive some sort of frenzied action will take over, but so far it's looking good for a stay of execution for the dust bunnies.

I think cancer has been the ultimate "OHMYGOSH" moment in our lives so far and it's put the details of life in perspective.

Quintessential Kate

We were driving home from Milwaukee today when my phone rang. The caller ID says it's Kate. It was one of those phone calls that makes your parental heart lurch. A sobbing child on the other end, a bad connection so you can't fully understand what she's telling you and you are trying to pick out the details while your mind shifts into "fix it, action mode."

All from hundreds of miles away.

If you're a parent you will understand my next observation.

I can judge the gravity of the situation by how quickly the daughter on the other end becomes annoyed. The best case scenario in a sobbing kid phone call is that the winds will rapidly shift to the kid being annoyed because I am too stupid to understand what is being said in between the sobs and static.

Kate actually has a pretty good temperment in these things and wasn't too short about my failure to immediately comprehend. I think Kate is used to being in the sort of situations that simply defy normal experience so she knows it's going to take me a few minutes to get up to speed.

She was driving on the interstate, heading to Indianapolis to take her state board exam, when the back bumper of her car ripped off the car and landed in the median. Just blew off. No accident, no bump, just ripped off her car in the wind. No one was harmed, but she had no bumper or license plate on the car now.

What??

She hits the high points again and adds that she can't be late for that exam. After talking for a few minutes, Kate is much more calm and is turning around to see if she can retrieve at least the license plate if not the whole bumper. She calls a little bit later, once again headed toward Indianapolis and her exam.

"Did you get your license plate?"
"Yes. And the bumper."
"Is the bumper in your trunk?"
"No, I couldn't get the plate off it and it wouldn't really fit in my trunk. It's in my backseat. And my front seat. If I get pulled over for not having a plate on the back, I'm just going to point to it and tell the cop that I did the best I could do."

I think she's safe. No one could make up this kind of stuff.

Quiet Times

Milwaukee--

Kevin had a little time one day between day meetings and dinner meetings. We went to the lakeshore--walked a little, drove a little, sat quietly and watched the scenery a lot.

Beautiful, warm day. People were picnicing, biking and flying kites along the lakefront.

It was good to have a quiet moment away from work and cancer and everyday adjustments.

This ain't Orlando, Honey...or San Francisco...or.....

Kevin's annual SPE conference trip. He and Kate made this May conference their father-daughter "thing" for her high school years. Orlando, Dallas, San Francisco. Kate would take a tour of the city or lounge poolside while Kevin was in meetings then they would explore the area when he had some free time.

I think they stopped phoning me with "traveler updates" after one infamous year when they were in a convertible cruising over the Golden Gate bridge and had the unfortunate timing to call just as some little person vomited all over me.

" You rented a convertible? Oh. You're driving across the Golden Gate? Oh. On your way to tour a winery? Oh. Well, gosh, I'm so merry freakin' thrilled for you that I could do a happy dance. But then the puke on my shoes would spatter across the rest of the floor. Dinner? At the winery? Sounds lovely. Me? Well, I was going to have the leftovers from lunch but now that I get a second look at them on my shoes, they don't look all that great."

It seemed like a reasonable response to me.

There was an unspoken pact after that to downplay their travel escapades.

Now that I'm not working and am finally able to travel with him, where are these conferences held? Chicago. Milwaukee. This is not the lush tropical or exotic locale he promised when I signed on for this plan.

The downtown buildings block a view of the lakefront from our hotel but I'll settle for a fiery sunrise beyond the skelton of towering scaffolding.

If You Have to be a Grandma, Be a Cool One...

Joshua's soccer team is called "Fire." He thinks that is very cool.

We were able to see him play today. It is my completely unbiased opinion that he is one of the best players in his age bracket. At least he understands which goal they're aiming for which is a big leap ahead of a number of the kids out there.

Kevin's long ago coaching days come out in flashbacks during the games. I have to remind him a lot that he is GRANDPA at these soccer games, NOT "Coach."

I scored major grandma points by making a t-shirt design for Josh with the team name and some photos I took at his game.

It doesn't get much better than having a 6 year old think you're amazing.

Well Dressed Driving

Left home early this morning so we could make Josh's soccer match on our way to Kev's board meeting and conference in Milwaukee.

SPE board meetings are a sort of mental milestone for Kevin in his treatment and recovery. Something to aim for in his bid to have a "normal" existence through as much of this as possible. Last fall his goal was to make the Chicago meeting. Once that was done, he set his sights on May.
Traveling with cancer adds to our baggage. There is a bag packed with single serving size drinks since Kevin can't tolerate the cold drinks we could buy on the road. Along with the drinks, there is an assortment of single serving sized foods--to hold off the nausea he has to eat small amounts more frequently and we have to be careful about "public" food with his blood counts being low. There's another bag full of his medicines and diet supplements. That's kind of mind boggling for a guy who used to consider it a big deal if he had to take 2 Tylenol to shake a headache.

The best news about him being able to make this trip is that it means we get to push off his next chemotherapy treatment by a week. So he has extra time to recover before the next kick is delivered. Maybe some of that cold induced neuropathy will ease up in his hands and feet.

I realized what a good thing that extra recovery time may be for him when I noticed his driving attire this morning. No fancy leather driving gloves for him; the smartly attired cancer patient dons soft warm knit gloves before grabbing that cold steering wheel.

Early To Bed...

Thought I would check in before heading off to bed. It's early, just after 7 PM, and I'm beat. So is Kevin and we still have packing to do before heading off this weekend for his conference in Milwaukee.

Kevin is glad to have the extra week off chemotherapy. He's very tired, physically and emotionally. The whole effort takes a toll. He's tired of the nasty taste, the pain, the headaches and the nausea. He's just tired.

I'm not sure why I'm so tired. Everything seems to take twice as much energy as I have and I fall asleep everytime I sit down. I've been telling Kevin it's my way of being sympathetic to his very real fatigue. Sort of like the guy who gains 15 pounds while his wife is pregnant.

I think it's just been a long, long winter around here.

So I'm off to bed while the sun is still out and I'll worry about everything else tomorrow.