Dancing and Sleeping

We celebrate differently.

Kevin is sleeping. It's the well earned sleep of a man who has been waiting for days.

I've been dancing. You know the dance Snoopy the beagle does in the old Charlie Brown TV specials? I've been doing my best Snoopy happy dance.

Dr. Francis called late today to share the great news that Kevin's lymph nodes are clear. No cancer. The guidelines suggest that you biopsy at least 12 nodes. The pathologist checked 16 and all were cancer free.

It was a great moment. We laughed, we cried, Kevin was quick to offer a thankful prayer. We made a lot of phone calls and sent a lot of emails.

For Kevin this is the best news he's had in 4 weeks. He can rest now.

I'm a little concerned that the surgeon and the oncologist aren't going to agree about Kevin not needing further treatment. I've been reading again.

But for this weekend I'm not raining on Kevin's parade. He's earned the rest and the peace of mind.

Holding Together

Kevin's surgical staples were removed today. He's healing well and everything looks good.

I was a bit fascinated with how the staples would be removed so the surgical nurse showed me how the little tool works. She was called from the office for a moment and, joking, said "Go ahead and take the rest of those out if you want, Lorri."

I saw absolute fear shoot through Kevin's face.

I decided to give him a break and not take a shot at removal although temptation was strong. The guy's been through enough lately, though, and deserves some peace.

I think he had a few fears of the staples coming out and the whole thing falling apart behind them. Seems a little risky to him to expect the entire works to stay put behind one long week old scar.

Rhonda, the surgical nurse, did tell us that Kevin's CT scan was "extraordinarily clear." That is a welcomed relief. She checked for the pathology report on his lymph nodes and it's still not in so we continue together with some anxious waiting.

First Full Day at Home

First full day at home. Kevin rested well and walked a little in the neighborhood. I needed to submit some photos for a gallery show and he rode along for that although I made him stay in the truck because of the long walk to the office.

Paige drove up from Indianapolis tonight and mowed our yard. We appreciated the help and got a kick out of it all at the same time. I don't think we've ever seen her mow a yard and she lived in this house for 21 years! I told Kevin that I would have bet that she didn't even own proper shoes for yard mowing and it turns out I was right!

Gina and Travis brought over one of their recliners for Kevin to use for a few weeks as he recouperates. We thought it would be easier for him to get up and down from that then from our sofa and he can rest in it away from the kids during the day. They've done so much to help us in recent weeks.

Kelly came over too and ran some errands for us. It made our day much easier to not have to worry about getting those things done.

I fixed dinner for everyone. Kevin is eating a little at a time. He's walking a lot and generally improving.

Home at Last!

We are home.

With the promise of more jello, Kevin's body kicked into fully awake mode. He had a full meal today for the first time in a week and ate a big breakfast. Dr. Francis announced this morning that he would spring him from his hospital prison.

Took a large chunk of the day to get the deed done and Kev had to endure through a few things first. The discomforts of having tubes, surgical drain and IVs removed was pretty small on his annoyance scale after the last week.

The promised lunch was snatched away when Dr. Francis ordered a CT scan before letting him leave. This bothered me--does it mean the pathology report isn't good?

I've learned not to beat myself up with questions which can be answered with a phone call. the surgical nurse tells me pathology isn't back yet and she says they wanted a baseline scan of his lungs and it made sense to do it while he was still hospitalized.

Makes sense. They compare future scans with this one to see if anything is changing. It's a simple way to eliminate suspicious areas.

Kevin was glad to eat dinner in his house, to crawl into his bed, to have both cell phone and computer within easy reach. We are thankful to be home and for how well he's recovering.

I can see God's hand in this--one more night in there and I was going to stir up the Louds just for the entertainment value. I had been thinking of snatching the pylon and leaving a ransom note. Or using it to reserve the women's bathroom for my own use.

God clearly has a special place in his heart for nurses; he spared them the pain of my impatience.

Rightside Up Friends

John and Elaina to the rescue.

We were hitting a wall by this evening. Tired, depressed, disappointed.

We want to go home! We want to know Kevin is fine. Safe from more cancer.

Enter John and Elaina Balser via cell phone. They listened and talked us out of our blues.

Maybe coincidence, maybe a result of letting go of a little stress, whatever the reason, Kevin's body moved further in the healing process tonight and was rewarded with jello and soup. The nurses's were very apologetic for the semi-solid meal, Kevin was ecstatic. He thought it was a feast.

We said our evening prayers with special thanks for our friends. And for the fact that the Loud family numbers were greatly diminished tonight. It's almost quiet in the hallway.

Kevin added a special thank you for Jello and the cup of ice cream he scored after his late evening supper.

I reclaimed my bed, er, chair.

The orange pylon was back in the front parking spot when I made my nightly dash home and back. I ignored temptation.

Kevin is reading. We both napped earlier, after our phone call with the Balsers. I think we let enough of the frustrations go that we could rest. Kev is tired again now but he's hit a good part in the Hogwart's adventure and he's unwilling to turn out the light until things are righted for Harry and friends.

That's what friends do; stick with you until things are rightside up again. Special thanks to John and Elaina.

Windows that Open and No More Cancer

The after-glow of having trumped the Louds is wearing off.

Kevin is reading--plowing through the exploits of Harry, Hermione and Ron. His patience is wearing on my patience. I have this growing desire to shake his bed and shout "WHY are you so accepting and patient!" I don't really want an answer; I just want the release of a nice loud shout and a little company in my inability to wait well.

In fairness, even Kevin is growing impatient with waiting for the nether regions of his body to catch up with the rest of him. We walk every couple of hours. There's nowhere to go though and I think we're wearing a rut in the floor--exit his room sharply to the right, circle the elevator block, left back onto the floor which gives us a straight shot to a dead end hall.

We stop at the windows just beyond the elevator and imagine what's going on out in the real world. The first day or two I made up stories about the people across the street in the park and the hospital staff that lurks in the smoking lounge (think rickety wooden picnic table) just beyond the bounds of hospital property.

I'm all out of stories. We're anxious to hear the pathology results on his lymph nodes. There's a lot riding on clear nodes.

The longer we wait, the less confident we feel.

Kevin wants to sleep in his own bed. His new hardly tried out bed that so far has cost him $80/hour to sleep in. And he wants to take a walk without having to adjust an assortment of attachments. He wants something to eat. And he wants to know there's no more cancer lurking around.

I want to soak in my giant bathtub--27 inches deep, 42 inches wide, gallons of hot water and mint scented bubbles half-way up the wall. I want to sleep in a bed. Any bed. Sit in our garden and watch the hummingbirds.

And know there's no more cancer lurking around.

This place needs a garden. A sun porch. Fresh air. Windows that open.

I need some distraction. I'm going to go see if there are any Loud children hanging out. Maybe they'll let me play too.

How loud can Loud Be?

Recovery is a lot of hurry up and wait. Kevin feels pretty good but his body isn't 'waking up' and getting back to business like it's required to before he can have some food and be sprung from this joint. It's a viscious circle to me because I don't know what the heck his body is supposed to get back to business with if they don't put a little food in there. Seems like a straightforward in/out process to me. Nothing in obviously equals nothing out.

It's good that Kevin is the patient. Because he is that--patient. I'm not. Everyone knows it.

I've resorted to quiet acts of rebellion (call it 'revenge' if you want but I think that's a bit harsh) to release a little of my pent up frustration.

I've been sliding out of here in the late hours of the night to get a quick shower at home. Takes about an hour to go across down, get wet and get back up here. They aren't likely to try something new on Kev that late so I feel safe going then.

And I bring pizza or Subway or whatever I can find open back for the nursing staff on shift. Good care isn't something you can put a price on but you can certainly influence it with food.

I've noticed an orange pylon in the parking garage in a front row parking space. Interesting; there didn't seem to be anything visually wrong with the spot. Tonight as I slipped into the garage, I saw a car backing from the front row space. Then a passenger hopped out, reached in the back seat and pulled out THE ORANGE PYLON and set in place in the now empty parking spot. As I walked past the car I recognized the driver as ONE OF THE LOUDS!

And not even old Louds. These Louds are about the same age as my children.

The Louds are reserving a front row parking spot for themselves. There are forty billion of them up on the floor, picnicing and generally having a family reunion throughout the day. I trip over their kids and their balls, I watch other visitors move their trash in order to sit in a chair and I listen to them sleep every night. Yesterday one of the Louds snagged a chair from Kev's room while we were out walking the floor. That chair was half of my contrived bed!

And now I find out that I am hoofing it to a distant spot while they've been reserving one front row.

Part of me is appalled. Part of me admires their chutzpah.

My quick shower at home was unsatisfying. I want to sleep in my bed. (I want to sleep in my now gone waterbed but that's another thing entirely.) And I want to soak in my giant tub not get briefly wet, partially dry, throw on clean clothes and return to the hospital where I'm going to see a pile of assorted Louds snoring on chairs across from Kevin's door. MY chair.

The orange pylon mocked me when I pulled into the garage and realized all the close spots were full. I swear it morphed into an evil leer like a distorted orange smiley face as I drove past.

I don't know how it happened. Really I don't. But somehow the leering orange pylon ended up taking a ride in my truck...up, up, up the parking garage ramps. Right to the tip top spot.

I placate my guilt with the knowledge that it's next to the elevator access.

The parking spot was still empty when I returned from the nether regions of the garage. The empty spot beckoned to me and I heeded its call.

I'm sure it was all part of "God's Plan." Convicted in my belief.

I wonder how loud the Louds will be when they discover the pylon has gone missing.

I think I'll sleep well tonight. Even with half a bed.

Candy for Supper

Kevin has progressed to being allowed to suck on hard candy now. Kelly made a candy run and brought him the mother lode of hard candy supplies. They went for a walk up and down the floor ("Big Ben, Parliament. Big Ben...") just to give her the full flavor of how boring his day is.

My cousin and uncle dropped in for a few minutes this afternoon. I think Kevin was glad to see a couple of new faces today and they didn't stay long enough to tire him.

Kate did a photography assignment for me over in Clinton County and it's a relief to have that off my mind. I still have the design work to do on the job but it'll be done in no time once we're at home.

Kev still isn't allowed food but the progression to gum and hard candy shows promise.

The Family Loud

First, thanks to everyone who has left phone messages, text messages and sent emails. We appreciate the prayers and support so much!

He's doing great. He feels sore and tired but he's healing well. Still no food or water until things wake up and are ready to work. That's frustrating him, but it just takes time. We walked today. Then walked some more. And more later. His willingness to walk is a combination of knowing it helps his body heal and feeling like he's going to go nuts if he has to sit in the room any longer.

We've been here long enough now that I am assigning names to other patients and their families. Most notable is the Loud Family. I've named them The Louds for the obvious reason. They are loud. And many.

They first landed on our family radar when the entire lot of them plunked down in our midst in the surgical waiting room during Kevin's surgery and began to talk over and around us. As our little clan retreated to another corner, the Louds didn't even pause for a breath to say "goodbye."

Everyone on the floor knew when the Louds and their patient landed on the surgical recovery wing late on Friday night. Although my prayer life has been rather dismal since Kevin's diagnosis, I found my voice for several impassioned pleas that God please, please, please not direct the Loud family's patient into Kevin's potentially shared room.

I may have God to thank for the blessing of not having them in here; I suspect it was the handiwork of the night floor nurse who took pity upon us. The good news is that I've continued to pray--for the person who IS sharing a room with the Loud family patient and, thus, with a multitude of Louds.

The night nurse isn't stupid. Family can't stay overnight in a shared room. She had already pegged that I could help with Kevin's care and the Loud's mostly argue among themselves about their patient's care.

There are 5 Louds sleeping tonight in the waiting area across from Kevin's room. They even sleep loudly.

George Bush travels with less of an entourage than these people do. Earlier today and through the evening there was a steady influx of Louds of every shape, size and age. Little boys bounced balls in the hallway, babies cried, there was a continuous Loud shuffle from waiting room to patient room.

Around supper time the swing shift of Louds showed up with food and there were Louds balancing paper plates and cups in every nook and cranny.

I am going to go now and close Kevin's door before the Loud snores wake him.

Only One

It's late on Saturday night. No, it's early on Sunday morning. Oh, who knows whatthehell day it is. I slip out in the dark wee hours of the morning to dash home and shower and the daylight hours all look alike through the few windows.

Kevin is sleeping. Since I am in here with him and he's done so well, the nurses limit their visits to the required times for vital signs so he is able to sleep longer at a time. Every hour or so the shift nurse waves to me from the door to signal that we both know he's doing well. It works for all of us--the nurses can give more attention to the patients who need it and Kevin can get more uninterrupted sleep.

He had a good day. We walked several times--he hates doing it but he knows it's an important part of getting out of here. No food or drink until his bowels "wake up" which may be a couple more days. Activity should help things return to normal so he's willing to do what he dislikes. It's a real circus get things arranged for any movement beyond the bed. And it has to be incredibly hard on Kevin to move through the surgery pain, let alone with all the accompanying hardware. Then there are the times I get him moving away from the bed faster than I remember to grab the catheter bag; I'm happy to report that his panic reflexes are alive and well.

The nurses hauled in a recliner so I could sleep next to his bed, but I've found an arrangement of a couple of chairs in the corner at the foot of Kevin's bed works better for me. I'm out of the nursing staff's way, I can see him easier from there and get up sooner to help him as needed. He still needs help to change position in bed or reach anything. I can kick my feet up on the second chair and type here on my computer or tilt my head back and rest a little myself.

My notion that he'll be fine as long as I can stay awake and watch over things continues. It's worked so far.

It surprised me that he came to his room from surgery with no monitors which report back to the nurses station. This is a good thing though--means he's doing well.

His IV beeps when it needs attention and it's either something I can do on my own or I walk down to the nurse's station to get someone. I wonder how long things go when there is no one with a patient. I'm glad we don't have to find out. I suspect the nurses quickly realize if a patient has someone competent to help or not and plan accordingly.

I'm very thankful I am able to stay here with him. The nurses and aides are very good but he's one of many on a busy floor for them. For me he's the only one.

Recovering

It was a quiet but tiring day for Kevin. We asked most people not to visit today. There was no telling ahead of time what kind of adjustments Kevin might face after surgery so quiet and some privacy was the name of the game. Really, who wants to figure out the new plumbing with an audience?

Lisa and Ian brought up cookies for me--yumm--and blew a quick kiss in Kevin's direction. My sister and brother-in-law came this evening, brought me something to eat and stayed while I ran home for a shower. My father and Mary peeked in for moments.

Paige came in this morning with a roll of brown ribbon and safety pins. She pinned tiny brown "cancer bows" on her dad's gown while he was sleeping. He had a good (but painful) laugh when he woke up. Joshua came up for a brief visit and was pleased to find his grandpa sitting in a chair and not looking scary sick.

Dr. Francis is on call this weekend at the hospital so he was in twice. It eased my concerns considerably to have him seen by a doctor who knows him. Dr. Francis reiterated to Kevin that if the lymph nodes are clear he will not need additional treatment. We are stunned--pleasantly so.

I'm awed by Kev's strength. He was really pushed today to walk through the pain and dizziness. The medication for the pain causes dizziness and nausea for him. He walked 4 times today, a little more each time, and I know it was really hard for him. A nurse walked with us the first time and decided I could manage things after that. It takes some doing to make it all happen in sync--get him and his assorted tubes and IVs up and moving, stay right beside him to catch him if he stumbles then reconnect the whole mess once we're back at his bed.

The surgery sites are sore. There are 4 small incisions as well as one large one. And the drain tube and catheter both bother him and slow down his mobility. File this under things they don't detail when you make those marriage vows. "In sickness and in health..." is too damn general. People would think twice about marriage if they had to promise "through carrying around bags draining your urine and blood while we monotonously drag up and down the same hospital hall, time and time again...."

He's not allowed to eat for a few more days and can't drink either. But he can crunch on ice and I can wipe his lips with a damp cloth so we're doing that repeatedly. It's not very satisfying for him, but it's what we can do.

I knew he was feeling a little better late today when we returned from a walk down the hallway and he stopped to adjust the pressure mechanism for the leg wraps to something more to his liking before getting back into bed. He particularly hates the restriction of them. Ever the engineer, he just had to fiddle with the buttons and dials.
We've had a lot of voice messages and emails. I think I've answered all--we appreciate the prayers, the offers to help with things, the concern and good wishes! Kevin would like someone to smuggle something edible into him....don't do it! Or at least make it a Meat Lover's Pizza so when I take it away from him, it'll be something I can enjoy. Get the think crust, will ya?

Prayers versus Plots

Kevin is sleeping fitfully and I am here in his room. It's been a long night but went ok. He is awake every hour or so. His surgery pain is manageable thanks to the nifty self administered IV they allowed him to have late last evening, but he's feeling achy from being so long on his back. He would like a drink (not allowed) and is bothered by the various tubes and lines.

He's doing alright though. He's talking with the nurses when they ask questions and he knows the surgery went well.

He asked for his rosary a couple of hours ago. I watched as he struggled through the prayers, falling asleep off and on, losing his place but determined to complete the prayer. After the second decade I knelt by his bed and started to say the prayers with him. Many of our nights end with me falling asleep as we pray The Rosary together and this night was no exception. I feel asleep kneeling by his bed, with my head on the sheets. I woke up a little later to the sound of his very tired voice finishing the prayers and beginning to offer petitions of his own. He always remembers family and friends--known and unknown--who have been with us in so many ways. Then I heard him offer thanks and concern for those few, but significantly absent, friends who disappeared immediately upon learning he had cancer. The fear factor again, I guess. Anyway, hearing Kevin, as tired and weak as he is, ask the Lord to ease whatever burdens these friends carry which makes this time too hard for them was amazing. It was one of those moments I'll keep forever.

In many ways I would like to be more like my husband but, then, maybe we wouldn't "work" as well as we do. Kevin prayers for the Dead Doggers and I fantasize plots where we meet in Heaven and they call out to their long lost pet--only to have Fido take a leak on their leg before continuing on to romp off into the brilliant sunlight with me. Clearly, the downtime here is getting the best of me.

I'm probably going to want to call Father Dan and schedule an appointment for Reconciliation by the time Kevin gets out of here. Make sure he has a comfortable chair before we start, maybe bring him a six pack of some adult beverage to help him through it....

Surgery Day

I'm sitting in the lounge area right across from Kevin's door. He is sleeping off and on thanks to the help of some good drugs. I am spending the night at the hospital and have already seen the advantage to Kevin of having someone here just for him. When he wakes a little, he is confused at first and usually needs something adjusted so I'm glad I can be with him.

Surgery was long today. 5 1/2 hours of anxious waiting on my part. Paige, Kate, my sister and my brother-in-law waited with me. They left for a while and returned with Arni's salads and pizza. Being nearby, I am guessing there have been hundreds--probably thousands--of Arni's pizzas and salads consumed in this hospital.

I continue to be struck by the same/different aspect of life--this--cancer, surgery--is all so new, different, unique in our life. Yet, there is such a commonness to it too--so many pizzas eaten by so many people waiting for news in the same rooms in the same hospital.

Back to now the information you want...Kevin did great. He was positive and calm before surgery this morning. It was hard to walk away from him though when the time came for him to be taken back.

I have this image in my mind that as long as I can watch over him, as long as I stay awake and pay attention, nothing bad can happen to him. So waiting in a room that felt miles from him wasn't going to be my strong moment.

About 3 1/2 hours into the afternoon--nearly the time we expected things to be done--I got a call from the anesthesiologist telling me that Dr. Francis couldn't complete it laproscopically so they were proceeding with the full abdominal resection. That was hard to hear. Two hours later, though, Dr. Francis came in and said it had gone well, just a little tight working laproscopically.

No colostomy. YIPPEE! We had convinced ourselves that we could manage that just fine if that's what it had to be, but it's a relief that it was avoided.

Dr. Francis expects Kev to recover well and says if the pathology shows no lymph node involvement things are done. No chemotherapy needed.

THAT is amazing and wonderful news.

Kevin looks great. Really, really amazingly great.

He is in some pain off and on and, thankfully, not very awake for very long at a time. Tomorrow they want to have him up and walking so it may be a long day for him. He won't be able to eat for several days. That should be interesting.

Kate had to leave earlier and we convinced Paige to go on out to the farm to meet Rob and Josh. They are all spending the night at the farm. The others left once Kevin was settled into his room.
I am very appreciative of the people who stayed with me today--there were many others who offered to as well. We are so touched by those offers. Yet it feels good to be alone now. Or as alone as you get on the surgical floor of a hospital. No need to make small talk and time to think about how we got here and where we're going.

I can chat up God quietly now, make a couple of suggestions to Him about what He might want to do about a few things here (think of it as intercessory prayer, if you will), and generally say thanks.

Notes of Faith

Made it through the day. It wasn't nearly as bad for Kevin as it might have been. He didn't get that nauseous reaction to the sedative this time. He's becoming acclimated to the invasions of his body so at least anxiety doesn't add to the burden.

The nurses at the GI center remembered us from a few weeks ago. Three of them stopped to tell us how sad they felt the last time we were there and to remind Kevin that he is in a good place and will do well. "We can fix this" is what we heard from each one.

Even better, one of them mentioned that we could request a private room for Kevin's hospital stay which would ensure that I could stay with him the entire time. She even submitted the request for us! There are no guarantees but this makes a private room more likely. I am beyond thankful for her help!

Kevin hasn't eaten since yesterday because of needing to prep for today's event. And by the time he was released today, we were into the prep period for tomorrow's surgery so no food again. He can drink clear juices and water until midnight tonight.

I think going without food is a little easier than it might sound. The stress of what's about to happen--especially the large quantity of unknown--has dimmed his appetite considerably.

I've packed a backpack with what we may need for the next few days. Kevin wants a Harry Potter book, a rosary and--you guessed this, right?--his cell phone. We'll negotiate for the cell phone in a few days.

At the bottom of my backpack is a soft fleece blanket for Kevin. The Health Ministry at St. Tom's gave it to him. It has a pocket on it embroidered with St. Tom's logo. I handed stacks of 3 x 5 notecards to friends and family with instructions to write a note, a prayer, a joke, share a story...anything that would keep Kevin going in the weeks to come. They are to take the extra cards and ask anyone they want to do the same then return the finished cards to me. I plan to slip the cards, a few at a time, into the pocket for Kevin to find as he needs them. It will remind him that many people are thinking of him, praying for him and loving him.

I've already received a nice stack of finished cards. There are scripture verses and encouraging thoughts, jokes, prayers and stories on them. Some are from people we know; many are from friends of friends--people we've never met, probably never will meet. All are a witness to the faith of each writer and their desire to help someone get through something tough.

I'm pleased, appreciative and awed by the response. The absolute faith.

Kev's going to be ok.

A Kinder and Gentler Me...

...hasn't cawled out yet. A good night's sleep did nothing to change my conviction that some adults could just use a good twack in the head.

Our phone rings multiple times a day with different medical offices scheduling tests, giving us test results, setting up appointment dates. It's difficult for Kevin to play telephone tag between his meeting schedule and a doctor's office so we're handling things through our Lafayette location.

The result is that I am the official bearer of bad news for this man. "I've scheduled this procedure for you tomorrow. No, don't worry about it because another office called yesterday and the procedure I've scheduled for you with them next week is going to make this one look like an amusement park ride. You can thank me later, honey."

Tomorrow bright and early we go to the hospital for another "procedure." That's medical code for bigger than nothing and less than everything. This time it's for a nice set of internal tattoos to mark the surgical area for Friday. I have a "duh" moment until I think it through. The tumor appears to be contained within the intestine (this is good news) so the surgeon can't locate it visually. Tomorrow's tatooing will be done from within the intestine to show up on the outside wall of it. Great planning, which I love, but it sounds like a nasty procedure.

I ask about pain and a perky voice tells me "we'll give him something to take the edge off the discomfort."

Three weeks into this and I already know that's a load of crap. Taking "the edge off" just means he won't be in pain but he'll be throwing up and dizzy from whatever they give him too much of to mask wherever they've decided his "edge" might be. I'll be having a heart to heart discussion with someone tomorrow morning before any of this starts.

The Rantings of a MadWoman

Can a person get so full of pent up annoyance that they implode? Just sort of burst inward into tiny pieces? I think it's possible so I'm going to vent a little rather than risk the implosion. Kevin has enough going on right now--he doesn't need an imploded wife to deal with too.

You are the choice recipient of my ravings tonight because a) you already know I'm not a nice person so there are no big surprises on your end and b) you're kind souls who won't beat me up with my nastiness later--at least no more than is necessary to help me recall God does love all his creations (and he didn't send cancer or idiots to test me.)

I am making a list, occasionally by name, of people likely to be smacked, verbally or physically, before Kevin's cancer treament is over. Some may get beaten before his treatment even really begins. A few may not survive this weekend.

The Dead Dog People. These people tell me they know just how I feel because they just lost their beloved dog or cat to cancer. I know people get incredibly attached to their pets and use them as subsitutes for all sorts of relationships. But, folks, it's a dog or a cat and that's not the same as a person--any person, let alone the person my husband is to me. I know you think it's the same. This worries me. To the Dead Dog People: Unless you are under 15 years of age and have not had much life experience, comparing your dog or cat relationship to my relationship with my husband is just wrong on so many levels. I want to ask "what scared you the most when Fido was diagnosed--the fear of losing him to death or the fear of losing him in a dozen other ways, emotionally, intimately...?" The only reason I don't ask is my fear of what some of you might answer. There are things I just don't want to know. If you still believe your relationship with your deceased pup is the same as my relationship with my husband, do us both a favor and don't tell me. I think whatever it is you've been doing with that dog may be illegal everywhere but down a narrow street in Amsterdam.

The It's a Death SentenceSobbers. People are afraid of cancer. I know it scares the crap out of me. There are people, though, who are way beyond rational fear. They hear medical words, it doesn't even have to be the "c" word, and they shatter into pieces--little jagged splintering edges of glass that cut. These people don't merely cry. The Sobbers heave gut wrenching eye reddening waterfalls that leave me shaken as to the depth of their pain. They cling to me and I hold them up--literally--as they gush out their misery. This usually comes with a barely coherent story of a string of pets or people who were quickly picked off by a simple illness. To be fair, it's not just cancer that sends them on emotional grave digging. Anything will do. A hang nail is probably gangrene setting in and a pimple is more than likely a tumor and global warming has made it impossible for them to breathe. To the It's a Death Sentence Sobbers: In my case, people, misery does not love company. Get a towel and a good therapist. Please, please do not invade my personal space--and if you are hanging on me, you are invading my space--because you're so afraid of death, you can't live life. I can't make me feel better right now so I'm certain you're not going to walk away from me feeling good either. And--just for the record--shutthehellupalready. Kevin is going to get through this and be well. Do not wrench that hope away from me. I'm not avoiding realities here. I am moving through them one at a time and we aren't anywhere near the reality in which YOU seem to reside. Do I wonder if he's going to die from this, sooner rather than later? Yes, it crosses my mind. F-in' constantly if you need the truth. But I acknowledge the possibility and then embrace the hope that he will be made well. For many, many years. I'm going to make you a deal--someday he is going to die. Me too. Who knows from what or when, but I guarantee you that someday he will die. When he does, you can be right. And I will acknowledge your rightness.

The "God's PLAN" people. Apparently God has a PLAN and it involves planting a nasty bleeding cancer in Kevin's ass. I'm really getting cranky about this notion that God decided this would make Kevin a better person. There's this unspoken but palpable insinuation from the God's Plan bunch that THEY are such good Christians that God didn't have to invoke THE PLAN in their backside to accomplish His will. And what's with the "convicted in the belief" phrase? As in "I am convicted in the belief that God has delivered this awful disease to Kevin to prepare him for something better..." Attention God's Plan People: If God moved this into being with a specific plan for Kevin to have cancer then I am certain a part of His Plan includes my foot planted 6 inches up the butt of the next one of you to tell me how God planned this to put Kevin to "The Test." Let's see you test your imagination on what gesture I'm making your way right now. Don't worry. It's part of God's Plan. I'm convicted in the belief. Really.

The Information Gatherers/Dispensers. The IG/Ds collect details for the purpose of disseminating them later. They don't particularly care how Kevin--or anyone else in any situation--is doing but they like to have the information handy in case they run into someone who would like to know. Our only contact is perhaps a once a year chance meeting in the produce aisle at Payless. They have "heard about Kevin" from second hand sources and drop personal questions like conversational bombs in the midst of ordinary discussions. One moment we're talking about their summer vacation fun and the next line they toss out is "Will Kevin be able to keep his job, are you closing the daycare, is Kevin scared about chemotherapy?" If you are an IG/D: Well, golly, I think he feels like crap now and he's going to feel worse before it's done. His body has suddenly become a public access area and is about to be declared a SuperFund site. Ask me an easy question like "how do you feel about my total lack of genuine concern" and I'll give you an earful. And feel free to call the ASPCA and your pastor to get the word out that I'm gunning for The Dead Doggers and The God's Planners.

The Horror Story people. These are often the same people who forward every email chain letter that comes their way. Everybody has a medical story and nothing seems to bring it out like a malignant growth in your husband's hiney. I'm a pretty good listener, I'm compassionate, empathetic. I am, however, drawing the line at listening to anymore cancer/surgery/hospital/insurance gone bad stories heard by the teller from a distance and repeated in a way guaranteed to leave Kevin in great fear. No more stories about people who lost their jobs, their spouses, their house and their dog because the boss didn't want cancer "spread" around the office. No more tales of intestines that got reconnected to the wrong thing and now someone craps out their belly button. No more forwarded emails about doctors who pretend you have a tumor when you don't just so they can bill your insurance for thousands of dollars or take out healthy organs to sell in Las Vegas to unscrupulous guys they meet in dark casinos. To The Horror Story Sharers: I don't like reading your forwarded email myths on a good day. Google "urban legends" the next time you think about sending out that crap. And what on earth compels you to tell us what you heard twenty times removed from the original source about someone who got royally f'ed over by an incompetant doctor or medical system and is now broke, lame and witless? Keep it up and you'll have a real medical horror story to share about how your doctor had to extract your arms, legs and head from your butt one piece at a time after I turned you into a ball and bounced you out of hearing range.

I could continue but you have to be tired of reading it and I'm sure as hell tired of thinking it. Thanks, dear friends, for letting me rant. Since you know me well, it probaly won't surprise you to learn you may have saved the life of a moron tomorrow by letting me release a little steam tonight.

Cancer Takes a Point

We have a grown-up bed now.

I argued for years to keep our waterbed. Kevin didn't keep up an ongoing nag about replacing it (which shows he doesn't understand the first thing about nagging, but does understand a lot about compromise) but every once in a while when we were repairing yet another leak, he would suggest it might be time to move up from the 70's.

I loved the bed. It wasn't hard. It wasn't soft. It was just right. Warm to crawl into on a winter night and cool in the summer. Many winter nights I crawled in between those sheets and thanked God right out loud for warm waterbeds. It's one of His better efforts.

With increasing age and an overall creeping up of the scales, the waterbed had become a little risky. On several late nights Kevin had dropped on his side rather than easing in and the resulting tsunami nearly pitched me to the floor. My tossing and turning at night came close to giving Kev motion sickness from the answering waves.

With his surgery and recovery looming I knew it was time to say goodbye to my youth. I was pretty certain we wouldn't be able to get him up from the waterbed post-surgery. And I knew he wouldn't rest well with my every movement casuing a mini-tidal rush on his side of the bed.

Kevin put up a 2 minute supportive front of pretending he didn't want me to make the sacrifice--and then he happily escorted me into the mattress store where we bounced, stretched and pretended to sleep on a dozen different combinations.

Buying a mattress is worse than buying a car. And takes twice as long. I agreed to go to one store. Only one. No driving around to sit on thirty different mattresses knowing we would forget what felt like what and where. One store. And the clinching criteria was that it had to be delivered before mid-week. Even with deciding quickly and paying cash the salesman managed to stretch the experience over several hours. I think he wanted us to feel we were getting a lot of attention for our money. Looks to me like it cost about $300 an hour to buy a mattress, box spring and a lot of chit-chat.
Throw in another hundred bucks for sheets and pillow cases. Hey, I bought the nice 600 thread count stuff. I'm entitled to some compensation for relinquishing a piece of my youth.

The destruction of our waterbed went well into the night. Who remembered it had so many pieces and parts? If I had known how nastily dusty and dank smelling it was in the nether regions of a waterbed, the thing would have been gone long ago.

So the remaining symbol of young and crazy days is piled up alongside the garage until time permits its end on a suitable pyre at my sister's farm. We are the proud owners of our first grown-up bed together.

So cancer takes this point. The waterbed is gone.

Putting Cancer on Notice

Kevin was anointed this morning at St. Tom's. He waivered about it for a couple of days before asking me to arrange it. Father Dan and Father Jim both wanted to participate.

It was pretty amazing. Father Dan read the prayers, Father Jim stood behind Kevin while everyone gathered around and, as much as possible, placed a hand upon Kevin.

Our three girls were there as well as my sister and brother-in-law, my father and Mary. Zelda. Beth and Eileen and other friends from St. Tom's. We had emailed some of them and told others as we saw them.

From there the number of people just grew on it's own. Sort of a counter movement to the cancer and the way it just grew on it's own.

Other people we know--some we know by face but not name--realized what we were doing after Mass and joined the group. One of the new priests, Father John, had been chatting us all up before Fathers Dan and Jim came in and he stayed once he realized what we were doing there.

It was amazing. There were around 30 people, most of whom joined in on the spur of the moment to support Kevin in prayer as he was anointed.

I like the idea that right up front Kevin's cancer is being given notice. Our ability to grow healing through prayer and the support of family and friends is stronger and quicker than cancer's ability to continue growing in his body.

Serenity

We took some time off from cancer today. At least a few hours.

Work is keeping each of us busy during the days but cancer is still an ever present thought intruding on much of our days.

Tonight we decided to banish cancer from our life. Just for the evening.

We didn't spend the evening talking about anything cancer related. We had supper together, we talked about work and what we needed to get done around the house, we revisited our favorite times from our June vacation on Sanibel Island, then we sat out back in the swing. Kevin built the swing and the arbor that holds it. I painted "Time began in a garden" across the front of it. We watched the hummingbirds flit around the feeders, heard the bullfrog calling from the pond and waited for night to fall and the fireflies to come out.

I wanted to stop time and hold onto the evening forever.

Stories, Books and Life--August 2007

August 2007...You can tell a lot about what's going on in our family by the books on our shelves. Dr. Phil's latest tome is covered in dust. Summer vacation brings out our favorite repeat reads; I like Greeley and Kevin likes Herriot. Backyard Birding isn't shelved; it sits on the edge, ready for a quick grab. There's a shelling guide with shells stacked on it from a recent trip to Sanibel Island. A well thumbed collection of different versions of the Bible. There's always a mix-in of our favorite Christian/Catholic authors/books. C.S. Lewis, Billy Graham, Scott Hahn, a biography of Dorothy Day. Front and center tonight are a half dozen books with the word "cancer" somewhere in the title. A growing pile of handout pamphlets featuring the same word, cancer, is scattered across the shelves. Kevin's been diagnosed with rectal cancer. Ten minutes worth of conversation in a hospital recovery room with a doctor I had only met moments before has turned our lives upside down and inside out. I'm bothered by the increasing presence of the cancer themed reading material. I look on my side of our bed and it's clear that reading about cancer is beating out the current issue of Photoshop User. On my computer desk, my Bible has a not-typical layer of dust around it and 100 Questions and Answers about Colorectal Cancer on top of it. This surely belongs in another time and place, another life. Not mine. Not ours

Second Oncologist

Kev is on his way from Ohio. There's so much to talk about and decide now.

He met with Dr. Skinner in Ohio today. I talked with her by phone. The treatment is essentially the same as what was outlined here in Lafayette, making some assumptions for what stage his cancer is determined to be after surgery.

We both like her attitude about his treatment. She listened when he told her how much he enjoys his work, she encouraged him to work as much as possible, she offerred a plan to attempt to make treatment there work with me here in Indiana, she examined him (OK, not his favorite part of the day, but it bothered me that the oncologist here said 'I avoid these and pelvic exams as much as possible, I'll read what the surgeon says after he examines you.' I didn't feel like she was sparing Kevin another unpleasant exam as much as she was sparing herself. It bothered me a lot.)

Kevin says the facility is completely different too. Larger, more spacious, state of the art equipment, a support staff who manage to be pleasant and approachable without stepping into being intrusive.

Oddly, though, he came out of the appointment convinced that we have to do it all in Lafayette. He feels like I will be giving up too much to come to Ohio, be too alone. His boss is willing to let him work from Indiana for the months of chemotherapy so the work issue is addressed.

There is more discussion to be had--I want him in the best possible place for treatment.

On the Schedule

The surgery nurse called today. She wanted to know how much time Kevin needed to "get things in order" before his surgery.

That was a little freaky to hear. Kevin is ready to have it over with though so I took the first date she had open. Kev just wants this part behind him.

Surgery is scheduled for the 24th. We'll be getting another packet in the mail with instructions and information.

So now I call the oncology office back and we get him on the schedule there a couple of weeks after his surgery to get the final information on his treatment.

This is all so surreal.

Another View

A few weeks ago I was in Ohio for a week and noticed a new building in town. Nice looking place. Kevin told me he thought it was a new cancer center.

I don't think either one of us gave it more thought than that. Interesting now to realize how quickly we dismiss things that don't fall within our radar, our needs and interests. And how quickly all of those perceptions about our needs and interests can change.

I hit the internet to research the place, The Boyd Cancer Center.

This morning I phoned Boyd Cancer Center and was impressed with their compassionate and helpful response; Kevin was returning to Ohio and I called to ask him to stop there first. Within an hour of my call they had a packet of information ready for him, had gotten his current medical history into their computer system and had the oncology care coordinator ready to meet with him. She gave him a tour of the facility and an overview of how things might go.

He is going back on Thursday to meet the medical oncologist.

Already I like the way they listen and respond to what they hear, not what they expected to hear. They listened to what I said in our phone conversation and were prepared with answers to the questions he as likely to have for them. They caught on that he likes his job and needs that part of his life to be factored into things.

I want him treated like an individual not like some plug-in response of 'here's what you have, here's what we do.' I want it understood that he is the customer, they are serving his needs, his best interests.

He is Kevin. He is not just another patient with rectal cancer. And I want him cared for by people who recognize that.

Another lesson learned--it's not just "get a second opinion" with cancer. It's bigger. The treatments may be pretty much the same for a particular cancer from place to place but the atmosphere, the facility and the people make a dramatic difference. Kevin will be spending many hours directly in treatment at a clinic. His comfort, his emotional well being and his reactions to the place/people have a huge impact on his response and recovery.

Mass Tonight

Tonight Kevin and I are really missing one another.

I can already see how cancer has altered the direction of our lives. Living apart weekdays has had it's occasional rough moments but all in all we've managed it well. Facing Kevin's cancer reminds us that we are each other's largest support system which magnifies the distance this week.

Went to Mass tonight for the Holy Day. We had emailed some of our parish friends a few days ago. After thinking about it some, Kevin decided to be added to the prayers of the faithful and Beth managed to work his name in tonight. It was strange to hear his name read out loud.

I had to laugh--in between a lot of uncontrollable tears (The Mary songs always bring me to tears and especially this year)--Lisa and the kids sat with me. Always kind and generous, Lisa is especially tuned in to cancer and what it brings to a family. Her mother died just about a year ago from rectal cancer. Their Maragret is a particularly candid 8 years old. Realizing that Kevin has cancer, she made the obvious association to her grandmother's death a year ago. "Is Kevin going to die?" Lisa looked horrified but it seemed to me like a perfectly reasonable question. Heaven knows it's been bouncing around in my mind nonstop for days now and I appreciated Margaret giving it a simple voice.

St. Tom's reminds us that we may be overwhelmed but we are not alone.

Part 2, The Surgeon

We like his surgeon a lot. Dr. John Francis. More important, I can see how confident Kevin feels about him.

He stacked up well in the research I did beforehand--does medical missionary work, has an impressive experience record and is specially trained in laproscopic technique. He thinks he may be able to do Kevin's surgery laproscopically which would mean 4 to 5 small incisions instead of a full abdominal opening. We both feel good about his skills and decision making abilities.

Which is a major plus because Kevin's surgery is going to be one of those "decide as he goes" deals for the surgeon. Depending upon what the surgeon encounters, it could be laproscopic, a full abdominal resection or possibly go into an abdominoperineal resection. We won't know until it's over if he will have to have a colostomy. We really won't know much at all until after the fact. I felt like he heavily prepared us for the higher end of the scale but the window is open for it to be less. And I could see Kevin relax with this new hope of a less devastating surgery.

Surgery will be scheduled in the next few days and probably occur within the next couple of weeks. He may be hospitalized as long as 10-14 days, depends upon which surgery is done and how he responds.

It was a comfortable meeting especially considering the topic . He did a thorough exam (already I know we will never again hear the word "peek"--as in "doctor will want to take a peek up there"--without relating it to cancer) and I was allowed to stay which helped Kevin be more calm and let us get a lot of questions answered right there in the moment.

I'm not in the least bit squeamish and probably do better, in fact, when I can be with Kevin rather than shunted off somewhere to worry about him. Kevin doesn't hear well and he relaxes more if I am there to listen and repeat information he would miss otherwise.

The 'stand back and watch from the outside' part of me did think it was probably a pretty strange scene. The three of us in there chatting about missionary work in Africa while the surgeon was busily taking the aforementioned "peek up there."

The good news from the exam is that the tumor is higher than the surgeon expected it to be based on what he had read in the colonoscopy report. "You don't want to be able to reach up and touch these things" is how he put it.

I'm going to take his word on that not being able to touch it thing.

From a surgical standpoint, the higher the better in terms of allowing surgical access and enough room to work and put things back together. This increases the chances of both completing the surgery laproscopically and avoiding a colostomy.

We were ready to hear some good news today and doing so makes it easier to move forward.

**Surgical technical note which may be more information that some want so feel free to slide on past this portion. Having the tumor be located higher improves things in a number of ways, including:
First, it becomes easier for the surgeon to get to the area if it's more away from the pelvic bones. Higher increases the chances of laproscopic surgery succeeding and improves Kevin's entire recovery period.
Second, the tumor will be removed as well as an area above and below it along the bowel. This will limit the liklihood of there being other, scattered cancer cells left to grow. They refer to this as having "clear margins." You don't want pathology to find any cancer cells in the surgical margins. If the tumor is too low in the rectal area, there may not be enough room to gain a clear margin or, in order to do so, there may not be enough bowel left on the low side to reattach to. This would mean a permanent colostomy. In a worse case scenario, it could mean a more intensive surgery with dramatic and permanent body changes.**

The Oncologist

The medical oncologist was the first doctor we met today.

She was ok. The facility was ok.

I want more for him than "ok." I'll admit it.

There were good points. She asserted that Kevin is young for this disease and in generally good health. She said he would not be vomiting endlessly like you hear about with chemotherapy; those side effects are better managed today. She seems like someone who considers her patients as hers and wouldn't be shunting him off to an ER doctor if something came up on a weekend. She didn't rush us through our questions.

She seems capable.

There are things, though, that worry us. Things that seem as if the fit is not right; maybe this isn't the best place for Kevin.

She read through his diagnosis history and didn't examine him herself. She said something about when it comes to "these and pelvic exams" she avoids them whenever possible. Said she would read what the surgeon has to say after he examines Kevin later. Kevin and I both came away feeling like she was sparing herself more than Kevin.

We asked about Kevin continuing to work through treatment. Kevin explained how much he enjoys his work and how much it contributes to his satisfaction and well being. She said most of her patients do not work during treatment. Suggested that he use this time to "consider a new career objective and develop a spiritual life. "

"...develop a spiritual life." Kevin and I stared at each other. We still haven't figured that one out. Was she fishing to find out if we had an active faith life or was she assuming we could use one?

She talked in detail about how when she vacations she goes completely away, totally out of reach of work. "Vacation" struck us as a lousy analogy for the 8 months of chemotherapy/radiation limbo she advocates. And who's in charge of his treatment if she takes one of those completely away, totally out of reach vacations? We would have liked that question answered and it wasn't.

I think she was cautioning Kevin about the strain of balancing work and treatment. It didn't come across that way, though, and totally discounted what he had already said about his work being important to his emotional well being.

We talked about our commuter life between Ohio and Indiana and how that had to be part of our decision about his treatment. She responded with some talk about other places often not being staffed with experienced doctors. She didn't tell us anything about her own experience though.

We asked to see the chemotherapy area. Another area the movie/TV people have wrong. (Just like the day he was diagnosed and I realized being told "cancer" in real life doesn't look at all like it does on TV.)

Forget those individual rooms you see on TV. Forget even those 3 or 4 person suites/sections you see on TV. It's a small and rather intense area with a lot of people for the amount of space available. IVs beeping, patients in a dozen recliners lined up in a row with family or friends squeezed in on stools beside them or across the traffic area from them. Put your arm out in any direction and you're probably going to touch someone. Bright intense lights. I don't think there were windows. Kevin doesn't remember any either. The chemical smell got to Kevin and he is not usually affected by smells. The very medical, very clinical aspects of it really hammered home the reality of what is happening.

The nurses are pleasant, though, and very busy. Seemed well trained.

The oncologist didn't greet them or stop to talk to any of the patients in the room although some people tried to catch her attention.

I know if she stops to talk, she'll never get back to seeing patients for appointments. Still, it bothers me. Chemotherapy patients are going through a lot. A few minutes can't be squeezed in to acknowledge this?

The treatment is more than we expected. More time. More aggressive. More everything; stretching out to encompass something in the neighborhood of 8 months. It would very likely be April or early May before he is finished.

Radiation is handled by a separate facility and doctor. The medical oncologist oversees the entire thing with a radiation oncologist overseeing the radiation treatment. We haven't scheduled yet with a radiation oncologist.

We didn't expect this to be a great visit. It's not something Kevin wants to do and who can blame him for feeling that way?

I wanted us to feel more confident about the doctor and the facility even if we are full of nothing but anxiety about the treatment.

We've tried tonight to put into words what doesn't feel "right" for us about the oncology side of today. Maybe it's just the shock of what chemotherapy really looks like--the time, the sights, the sounds, the smells. And maybe we'll feel better with a little perspective on this day. Tonight, though, it's just overwhelming for both of us, especially for Kevin.

Buy It By The Case...

We will spend today getting to know Kevin's new "medical team." Ten days ago he had one doctor who we called less than one time a year. Now there's a whole team playing on his behalf.

At some point that may become a comforting feeling--a whole medical team working to get and keep him well. At this point it's still mind numbing.

A serious medical diagnosis--and the resulting prep for tests and appointments--has a way of adding insult to injury. In Kevin's case, we have suddenly become well acquainted with areas of the drugstore we had never previously traveled. Like a teenager sneaking in to buy condoms, we make a quick reconnaisance pass then do a swoop and grab from the selection of concoctions designed to cleanse one's insides to hospital standards.

Always the full-on optimist, Kevin was all for buying one bottle. Ever the AssBackward Optimist, my plan was that we buy a case, collect the bulk savings and never have to darken that aisle of the drugstore again.

For the record, we can now offer a rather comprehensive discourse on the advantages of one package design over another should you find yourself in the digestive cleansing marketplace. There is some truth in the old "you get what you pay for" adage. Don't go cheap; your insides will thank you for spending the extra coin.

Kevin and I have now talked the inner and outer workings of the human butt to the point of eliminating any lingering modesty that might have been hanging around after 16 years of marriage. I'm going to miss our innocence.

Another Life Lesson

Cancer is a great teacher. I've learned another life lesson already.

Good friends do what you can't.

Kevin is staying through until Tuesday morning. We have appointments to meet the surgeon and oncologist on Monday.

I think we've worked a little bit of normal in around the cancer conversations. The yard is mowed, the gardens weeded.

We've sat together and filled out enough paperwork to equate a book. I guess it is a book. Kevin's Medical History. After living life with one or two doctors on the string, he suddenly has a half dozen new ones and every office wants it's own set of paperwork.

Kevin is still trying to come to terms with feeling as well as he does versus this potential killer they say is growing inside him. He occasionally tries to slip in the "do nothing" approach.

I remind him that, courtesy of Dr. Mahadgen, we have full color pictures of the beast within.

Pathology came back and confirmed what we already knew. It's cancer. They won't "stage" it until it's examined after surgery, but it's definitely cancer and large.

It was good to go to Mass together today. Good to see and hear from friends, good to know they are remembering him in prayer.

Because I still can't do it. I'm numb. Or just plain pissed off. I'm not sure.

But I really value the prayers of our friends right now because I know they're doing something I can't get done.

Everything's Funny...or Not

I'm not sure if the slightly dark humor invading our conversations is a sign of avoiding the worry or accepting the reality.

It's kind of the typical operating mode for the girls and I but even Kevin is getting in some good ones now.

Today I was already in the produce aisles at WalMart when he came in from parking the truck.

"Hey, I saw a car with pink ribbons on it in the parking lot."
"Yes, honey. I think those are for breast cancer awareness."
"I know. But I was thinking...if breast cancer gets a pink ribbon, what color is MY ribbon?"

I stop the cart and stare at him.

"Because I'm thinking the ribbon for rectal cancer has to be BROWN."

I laughed until I cried. Maybe because it was so funny. Maybe because it was even funnier coming from Kevin. Maybe because he has cancer and nothing is really funny right now.

Daycare Notes

We decided talking to the daycare parents is a priority. With school due to start within days, we want them to have options.

These children and their parents are part of our family; we belong to one another. Most of our daycare kids come as newborns and stay until school age or longer. Sometimes things in their home lives makes this their extended home. Nights and weekends. Holidays.

Throwing their lives into chaos is one of our biggest concerns.

We were blown away by their concern and support.

I'm mad at cancer. Mad that it threatens so much of what I love in my life.

But for now there's a plan in place to keep us going. The parents have humbled me with their trust and loyalty and their concern for how we are coping.

It means the world to me that they think it's worth some effort to keep their children here with us.

What Happens In the Bathroom,

stays in the Bathroom.

It's one of our secrets to a happy marriage. Sixteen years of marriage hadn't brought any reason to violate this basic tenet of cohabitation.

Cancer breaks all the rules.

Any sense of embarrassment about the sharing of body function information has dissipated. We've written it all repeatedly until our hands are cramping.

Six days into this and we are getting daily deliveries of big thick envelopes. Every medical office that might possibly come in contact with Kevin's bum needs a review of his medical history, a detailed account of his digestive processes and a personal statement of occupation from his cancer.

Scheduling appointments, getting treatment/diagnosis options and staying on top of insurance eats a huge amount of energy. The inefficiency in the name of privacy is maddening for both patient and provider.

To this computer savvy family, the repeated handwritten rehash of the same information seems like an enormous waste of available technology. Once on the computer should be enough then ctrl + C for further use.

Working together over the phone, we filled out yet another form tonight. In "descriptive language" as requested.

Me: "You know I could have gone my whole life without knowing that bit of information."

Kevin: "And I would just as soon not have you know. So feel free to forget it."

Yeah, right.

Be an AssBackward Optimist

I usually have a safety pin, something to write with and a couple of bucks in my pocket.

I am an optimist.

Some people might argue to the contrary. It could be said that I see the worst case scenario.

THAT'S what makes me an optimist. I've looked at the entire picture, examined the good and the bad possibilities. And I have a plan. Sort of. It may not be complete and it may not be a good plan, but I've usually got something in my back pocket for dealing with whatever crap falls out of the sky in the meantime.

The assbackward optimist in me doesn't precisely have a plan for coping with and helping Kevin through this cancer, but I have armed myself with enough information to be able to get the information we need from the doctors who are going to save his life.

I know some of the questions we need to ask. And that's enough of a plan to satisfy me for now.

Paddle like hell. And carry a safety pin for emergencies.

There Will Be Change

In between the worry and scheduling-one doctor wants this, another wants that-of cancer, the daily work of life goes on.

The daycare kids are squeezing as much life as possible out of these final days of daycare summer. "Daycare summer" are those weeks between when school ends in May and when it begins again in August. Because I have several teaching families the number of kids in the daycare drops for the summer. The rules relax a little and we do a few things that are just too hard with a larger group of younger kids.

Hannah and Andrea are home all day from school, but after spending their entire 8 and 6 years of life here, they know the rules that can be stretched and the rules that don't bend. And the ones that can be pretty much ignored.

The kids are swimming twice a day, morning and afternoon. Pool life makes snack time more fun. They can eat sticky melon and popsicles and let it drip all over knowing that they'll be jumping back in the pool. We've made tie-dye t-shirts and a misty summer day was a good excuse to bring out the umbrellas and play in the rain.

Daycare Summer is nearing an end. It's especially poignant this year because I know after last Friday we will never be the same. We'll be changed. I'm not sure how, but I know there will be change.

Faith

Honestly, I'm not feeling all that confident or faith-filled or faithful.

I'm feeling a lot scared, a little pissed off and a bit abandoned.

But I'm trying not to let those feelings overwhelm what I know, what Kevin and I both believe to be true:

That we were created by a loving God who provides us the means to get through every trial life brings.

Faith.

Be a Duck

Kevin is driving back to Ohio tonight. It's always hard to say goodbye for the week on Sunday evening.

Tonight it felt impossible. And as bad as it feels to me, I know it has to feel much worse for Kevin.

We've talked to the girls and a few very close friends but are generally holding off until we have more information. There are still more questions than answers which frustrates everyone.

Someone asked how I was staying so calm. This cracked me up. The doctor and one of the nurses at the hospital on Friday asked if I worked in the medical field. They said I was very calm which usually indicates experience.

I keep thinking of a poster I used to have. It showed a duck gliding serenely across a pond. The caption said something about looking calm above and paddling like hell underneath.

I'm a duck.

Prayers and Friends Who Listen

We sent 2 emails right away yesterday afternoon.

John and Elaina responded first with a phone call. John and Kevin go way way back and have that kind of friendship where they might not get one another called for several months but they just pick up where they left off the time before. John and Elaina were beyond great. They listened. A lot. And shared some information they had picked up through their experience with Elaina's mom and cancer. And listened some more. Offered their prayers and support.

Father Andy called a little later. Andy's picked me up more times than I can count. Our phone calls are usually a little one sided. He needs to talk and I listen a lot or I need to talk and he listens a lot. Tonight he listened a lot.

I'm not as good with prayer as Kevin is; I don't really get it. But Andy knows this and always offers to cover those prayers I can't quite get out myself. And when John and Elaina say they're praying for you, they're praying for you. It's not a commitment they make lightly.

The prayers are great, the knowledge especially strengthens Kevin. The listening was incredible though. John, Elaina and Andy listened while we bounced through an array of thoughts, worries and possibilities.

The prayers will help us through it long term. The listening makes it bearable now.

The Sun Still Shines

If Kevin had to have this diagnosis, I think I'm glad it came during the warmth and sun of summer.

After a night of very little sleep, it would have been hard to face a day dreary with rain or cold.

Instead we woke to the sunshine. Birds were still singing in our backyard. Clouds were still gathering in a sky destined to turn blue even in the wee hours of the day.

The yard still needed to be mowed.

This is good. This is normal.

We visited with my sister and brother-in-law at the Farmer's Market. They are saddened, sorry and willing to help with whatever is needed.

We've talked to each of our girls. They would like a few more answers than we have right now. So would we.

It's encouraging to see the sun shining and hear the birds singing today. It's a reminder that life goes on through all sorts of things and we will too.

May I Have Your Attention, Please...

Our different personalities came out yesterday in how we each reacted to Kevin's cancer diagnosis.

Maybe it's more a male/female thing than a Kevin/Lorri thing.

I headed into information gathering/planning mode. Hours later Kevin was still searching for the loophole in the diagnosis and determined to find a smaller solution than what we had already been given.

We had left the hospital, been to visit Kevin's internist, made appointments with oncolgist and surgeon and had lunch. I was driving on our way home.

"What if we just do nothing?" he asks. "I don't feel sick. I don't have symptoms. What if I just leave it alone? We'll just wait a while and see how it goes."

We've gone through this half a dozen times already during lunch.

He likes the ignore it for as long as possible method. In a handyman kind of guy approach, he's advocating an "if it ain't broke, don't fix it" plan. He is still unconvinced that we are beyond the preventive maintenance range, beyond the "ain't broke" range and into the major repair point.

He tries again with "So? I feel fine. What if I do nothing?"

I slow down the truck to look directly at him when I answer.
"Then you'll die."

I think cancer and I have his attention now.

I like to have a plan in place. Now we can work on one that doesn't involve duct tape and bungee cords..

182 Minutes

Kevin had a "routine colonoscopy" today--sort of a 'happy birthday, you're over 50' gift from his doctor.

We arrived at the GI suite of the hospital before 6 AM for his 7 AM exam. Just us and the nurses for the first 45 minutes or so. The only guy in the place this morning, Kevin good naturedly accepted a lot of teasing from the nurses and me. The nurses commented that as a reward for Kevin's tolerance of the teasing, they were going to get him "out of here by 8:30. You can be eating breakfast by 8:45."

I glanced at the clock when they took him back. 7:03. "We'll bring him back by 7:30, just wait here in his room."

As good as their word, a dozing Kevin was returned right at 7:30. No one made eye contact with me. No more teasing remarks about what they found. Just "he'll be out awhile; we gave him some extra sedation."

By 7:45 I knew Kevin had cancer.

The gastroenterologist showed up to talk with me. Kevin was still in the land of nod. Dr. M. had a handful of papers and started with "he has an ulcerated area. A lesion."

OK. I'm good with a lesion. This sounds like something that can be fixed with a change of diet and some medicated cream.

Then, "He has a large ulcerated lesion." "A bleeding growth."

I remember reaching to the chair next to me to move my computer and motioning for the doctor to sit down. This is going to be a sit down conversation.

"It's cancer. He needs surgery."

I looked at the clock. 7:45

The TV/movie people have this all wrong. In the movies people are called into quiet offices and sit in nice chairs facing their doctor across a big desk. Couples get to hold hands for support. They get some private time to adjust to the news before The Planning begins.

In real life you sit in a cold metal chair in a curtained cubicle of a busy exam area and get about a 2 second interval to be stunned and then it's time to focus on what you're being told. This is important stuff; you know you can't afford to miss anything. And you're alone because the other half of your couple-dom is still in an anesthetic induced dreamworld, getting the last few moments of peaceful sleep he's going to have for a while.

"... very large growth, very low....certain it's cancer....want some tests done now...call a surgeon and an oncologist today."...You want me to wait for the biopsy though, right?... "No, don't wait for the biopsy...do it today. "

"Do you have a surgeon? An oncologist?"....No. NO.

I know our life has already changed. If I'm ever asked those two questions again my answer will be "Yes."  It just seems bizarre.

In  sort of parallel part of my mind, I was impressed by the doctor. He so clearly felt bad about the information he had to give me.  But he was concise and honest and he listened. I mentioned Kevin's work in Ohio and he instantly rearranged orders with the nurses so Kevin didn't have to make an extra drive over to Indiana for more tests.

Kevin was starting to become aware of things--a lab tech drawing blood from an arm, a nurse getting additional information from me and arranging for a CT scan.

8:52 AM

He was so groggy still that it was well into waiting the 90 minutes in the CT area before he started to grasp what was going on.

I think those minutes will be forever etched in my mind. A room full of people, no privacy, Kevin feeling sick from the sedative for the exam and the contrast drink for the CT, not really clear minded yet, trying to understand what was happening. Me trying to help him grasp the idea of cancer.

I had this disconnected feeling. Outside I was calm, taking down information, regurgitating answers, keeping an eye on Kevin. Inside a million thoughts, smells and sounds were bombarding my mind. And somewhere over to the side I was watching all of it...Dr. M's demeanor as he told me, the nurses as they offered encouragement, other people in the CT area, my reactions and Kevin's slow comprehension.

It struck me as odd that these people we had never met before were suddenly cast in the role of delivering news that so changed our day. Our lives. I can't spell the gastroenterologist's name but I doubt that I ever forget it.

10:47 AM

One of the nurses from the GI area slid into a seat beside me in radiology. "I just wanted you to know all of these tests today are routine for diagnosis. Doing them doesn't mean things are worse than you think. They're routine."

Routine colonoscopy. Routine bloodwork. Routine medication. Routine CT scan. Routine calls to surgeons and oncologists.

I'm not sure yet where we've landed that all of this is routine.  We're clearly not in Kansas anymore, Toto.

The first 182 minutes of a newly defined "routine."