Indiana Visit

Busy day. We're at my father and Mary's home in Indiana. I may have underestimated the good sense of my parents--they're warm and sunny in Arizona, we shoveled knee deep snow to get to their front door in Indiana!

Kate sang a couple of songs with the Woodstove Flapjacks during their CD party last night. It was a good party at Duncan Hall.

Haylee turned 4 with the help of 8 kids and a ceramics painting place. Wiggling kids, a store full of you-break-it-you-bought-it stuff. Kev was a wreck.

Joshua spent some extra time with us after the party while Tante Kate cut his mom's hair. We had the absolute pleasure of taking him eagle spotting along the Wabash River. He saw 6 eagles, one flew downriver right in front of him. It was one of those grab and keep moments....a little Hoosier boy standing on the banks of the Wabash as an eagle flies past.

Had dinner with Patrick, Zelda, Joan and Charlotte after Mass. Was great to see them and catch up on what everyone has been doing. We'll see Hannah, Andj and Evan at Mass tomorrow, stop by the farm and head for home. Our weekends here go so quickly.

9 a.m. Camp Visit

Took my camera along for the drive out to camp for my job interview this morning. The ice is still covering everything and we had our first sunny day in ages. Here's what 9 a.m. looks like on a sunny winter day near Camp Joy.

The interview went all right. Dedicated people running a great camp. I think I answered their questions well and I'm certainly impressed by the facility and what it has to take to keep it running smoothly. I supposed it would be pushy to tell them how lucky they would be to have me so I settled for hoping to come off calm and unfazed by the four of them , one of me interview. Who better than me to organize, schedule, oversee, over-involve, pick up after, cajole suppliers, and generally make it work back stage? I've been doing this job my entire adult life.

Snow Day

The snow/sleet/snow combo killed my interview today. We've rescheduled for Friday morning. The county went to a Level 3 Snow Emergency in the wee hours of the morning and Kevin's phone went bonkers with people calling about getting in to work. We probably got 10 inches of snow total with 3/4 of an inch of ice in the middle.

With Kev at work 12 or 14 hours a day (and catching up on email once he gets home), I'm getting a little tired of my own company. I know it's bad when I turn on the TV and get lost in a fantasy where I'm sitting on Dr. Phil's stage and he's asking me about the alphabetized cans of soup in my pantry.

I lured up some company by filling the bird feeder close to the bedroom window. Who says you can't buy friends? The squirrels came in droves. The birds are harder. I don't understand why they don't understand there are no free lunches. If they want the good stuff on the feeder, I get to take a picture. Full frontal and those mousy looking sparrows better bring some of their more colorful cousins.

I got a few pictures. The snowy backyard, Kevin throwing out seed this morning to watch it bounce on the ice all the way down to the woods, ice almost an inch thick on the bushes and feeder hook. The best shot came after I had been sitting in front of the open bedroom window for an hour, fingers going numb from cold, camera on a tripod. Drooping below the feeder, like a furry icicle, was the squirrel's snow covered tail.

A Job, Weather or Not

Kevin is in his happy weather zone. He loves storms of any sort.

Issued by The National Weather ServiceCincinnati/Wilmington, OH 3:25 pm EST, Tue., Jan. 27, 2009
... A WINTER STORM WARNING REMAINS IN EFFECT UNTIL 12 PM EST WEDNESDAY.
A MIX OF SNOW... SLEET AND FREEZING RAIN WILL CHANGE TO FREEZING RAIN THIS EVENING. THE WINTRY PRECIPITATION WILL CHANGE BACK TO SNOW EARLY TOMORROW MORNING... AND THEN TAPER OFF FROM WEST TO EAST TOMORROW AFTERNOON.
TWO TO FOUR TENTHS OF AN INCH OF ICE ACCUMULATION ALONG WITH AN ADDITIONAL 1 TO 3 INCHES OF SNOW AND SLEET WILL OCCUR OVERNIGHT. ANOTHER 1 TO 3 INCHES OF SNOW CAN BE EXPECTED ON WEDNESDAY.
TOTAL SNOW AND SLEET ACCUMULATION FOR THE ENTIRE EVENT WILL BE 8 TO 12 INCHES.
A WINTER STORM WARNING MEANS SIGNIFICANT AMOUNTS OF SNOW... SLEET... AND ICE ARE EXPECTED OR OCCURRING. THIS WILL MAKE TRAVEL VERY HAZARDOUS OR IMPOSSIBLE.

We woke up to about 5 inches of snow this morning. The rain and sleet started around 3 this afternoon and continues tonight. It'll be interesting to see what happens in the morning. Typically a few inches of snow would shut this place down, add ice into the mix and we may be out for a few days. As as you can see at the top of the weather notice, the NWS has an office located here in Wilmington. It seems ironic somehow that the NWS is located in a place which seems to react so vulnerably to winter weather. I don't know what I expected...a tough guy shrug and a "oh, bad weather doesn't bother us in Wilmington; we have the NWS office right at the edge of town." Like it gives off some invisible weather barrier or something!

I have a job interview tomorrow with a local camp program. About a 10 minute drive from here. We'll see if they close the roads down out in the county. I'm all geared up for the interview so I hope it's not postponed. Wish me luck--they're looking for someone to assist in scheduling and general organizational tasks. Part time. Decent pay for the hours. Work in a program serving children but not actually with children. An integrated program of local day campers, inner city kids and MRDD programs from surrounding counties. There are some medical camps too. Plus an entire other aspect I wouldn't be serving too much which focuses on corporate training programs. I think it would be a perfect fit; me for the job, the job for me. We'll see if I can convince them I'm wonderful.

Don't look so damn skeptical. I've pulled off bigger tricks.

Employment Impossibilites Revisited

The Sunday Enquirer brings a new, and ever shorter, list of employment possibilities. The problem with job hunting through the Enquirer (once you move past the point that I am, apparently, qualified to do nothing) is the distance factor. Driving to the outskirts of the city suburbs is a 60 mile round trip. Four or five days a week times 60+ miles a day at 25 MPG times 2 bucks a gallon means multiplication is not my friend here.

I'm not sure I can afford to work. The age old problem of the unemployed has become a startling reality for me.

I keep looking though. A few more things have cropped up locally, although with a newly created 8000 employee pool in the area (see http://www.cbsnews.com/stories/2009/01/22/60minutes/main4747832.shtml for a recent 60 Minutes story on our little town) I am not likely to be a forerunner for most positions.

What I suspected for years is proving to be true. Nurturing someone's kids for 10 or 12 hours a day is not considered real work experience. Nevermind that a good number of those kids were the product of a dual working family where at least one person worked simply because they found it too overwhelming to be at home full time with their kids. The same people who hired me 15 years ago to raise kids they found too wearing to raise on their own now thinks I don't have any real life work experience.

It's no wonder we're a nation in crisis. On many fronts.

I remembered today that I moved here a year ago anticipating I would be job hunting at some future point when Kevin was out of treatment. At the time I cast a skeptical look on many of the obvious local employment possibilities. It's not that I thought I could land a job with ease; I've always known the value, or lack thereof, that would be granted to my former self employed life.

But I did imagine I had some marketable skills and could avoid having to consider certain jobs. In this new reality of no marketable skills, a tanked economy and Kevin's salary cut, I may have to revisit the impossible.

Check out this blog post from early last year:
http://whatdayisittoday-ls.blogspot.com/2008/01/another-day-another-box.html My big concern now is not that this might be the only job I'm qualified for, it's that there's a very good chance I'm not.

Plugging In

Three a.m. and I am wide awake, laying in bed and trying to decide what day of the week it is. I know the inauguration was Tuesday. Tuesday THIS week. So that would make today.....sometime after Tuesday. Thursday, maybe. Or Friday. I'm pretty sure about that.

It was my premier "oh crap" moment of the month--and this has been a month full of "Oh Crap" moments. I didn't name this blog "what day is it today" some 18 months ago for nothing. With Kevin's cancer diagnosis and all that followed so quickly, many of those early days morphed into a blur.

Or into a time trudging march of waiting, waiting, waiting which wears on me worse than a busy blur.

So I wasn't pleased this morning to realize that I, again, don't know the day of the week. Briefly I didn't know the date, the week in the month either, as I spent two days reminding Kevin of an appointment this Monday, February 2. Thankfully, something jolted me into the moment and I realized there is another week before his appointment. This is good. Arriving a week early for a 7:30 a.m. appointment wouldn't have started his Monday on a high note.

The goal for today is to get plugged back in. Find some sunshine in this dreary month of a dreary winter. Start something. Finish something. There are 30 some draft posts that I haven't posted here. Those will start showing up once I've edited some of the colorful language. (I told you it had been a month of "oh crap" moments.)

Oh, and in case you're wondering, it's Friday. All day.

Things We Learned and Forgot...

"Enjoy yourself. Roam around. Don't break anything."

I read an online report which claims President Obama greeted a White House visitor this week with those words.

This is like one of those "Everything I need to know, I learned in kindergarten..." things. Something we knew and lived by when we were 5 or 6 and somehow forgot along the way.

There's no denying the new presidency begins with plenty of things broken. But politicians through the decades have shown a remarkable ability to add woe to our woes so I'm certain more harm could be done, more could be broken.

Here's hoping our new president will abide by his own words.
"Enjoy yourself. Roam around. Don't break anything."

Bar Coded Buns

Kev is recovered from the invasion. Mad about what he sees as a crappy attitude-pun intended-from his gastroenterologist. But feeling better and determined to be well until he can see/talk with Dr. Francis to get an opinion he's more confident in.

I'm still reeling over the bar-code-on-his-ass supermarket mentality at the hospital. Cha-ching...this one's done, hike him out the door...

What a Crappy Day...

...pun intended. Sigmoidoscopy day. Don't know what that is? Check it out here: http://www.wisegeek.com/what-is-sigmoidoscopy.htm

Kevin is sick as can be from the anesthetic today. It's a 49 mile drive from Bethesda North to our house and he vomited for 42 of those miles.

We'll add Bethesda's outpatient surgery center, along with the gastroenterologist, to our list of "don'ts." It's like a cattle call in there; people being released before they should, still far beyond groggy from sedation, sick. No contact with the patient from surgery time until they wheel this sick, still mostly asleep person out to the curb where you've been exiled to meet them. Surgery nurses and volunteers are nice enough but the hospital's emphasis is clearly on head count.

Gastroenterologist reiterated that the colon needs to be resected. He actually bad mouthed Kevin's surgeon a bit then backed off when I took exception to it.

I've already contacted Kev's surgeon's office in Lafayette and made arrangements for them to review all of this when Dr. Francis returns from Africa.

Kevin is finally sleeping well without waking to vomit every 15 minutes. We'll let you know how things go.

Prep Work

I know how we raisead 3 girls in a small house with one bathroom. We didn't have cancer or it's sidekick, The After-Effects, living with us.

Kevin and I have two bathrooms now. One each. It's not enough sometimes.

Not, for instance, when he's doing the "prep work" for a colonoscopy. That's a 2 bathroom event all by itself. One room to use while the other room airs out from the time you used it 10 minutes before. Then a third, unaccosted, bathroom for the rest of the household (that would be me) to use.

Get through tonight and tomorrow and he is past what we hope is just a little bump (er, congestion?!) in the road.

Perfect Numbers

Tangie called from the cancer center. Kevin's blood work came in "perfect." She said there's nothing at all to even fake a little worry over. His CEA (think of it as a tumor indicator) level is down to 1.6, well within the normal range. It was a worrisome 2.1 last October. Very, very good news.

Naturally Animated

Last fall my delightful step-mother, Mary, had the great fun of going on a Disney cruise with her 5 year old grand-daughter, her daughter and her son-in-law. I have been entrusted with preserving their trip memorabilia in a digitally created scrapbook.

I've been working on pages about the restaurants on the ship. One is called "The Animator's Palate" and a little online research tells me the decor comes to life, from black and white to full color, as the dining courses progress. Even the wait staff's vests change from black and white to bright color.

I don't know how long Disney's embraced this concept in their dining scheme but I can tell you that women have known about it for years.

Every 4 to 5 weeks I do my own "Animator's Palate" thing and restore an inch or so of colorless hair to something akin to my blonde of earlier decades. Like the Animator's Palate, by the time breakfast is served this morning, my colorlessly gray roots will emerge in full bright blonde.

There's a whole dishonesty which permeates haircolor. Most of us who do the deed ourselves--at home, locked in the bathroom with a box of color and a pair of plastic gloves in the wee hours of the morning while the household sleeps in blissfull ignorance--are something of a secret society.

Even the name of the color itself is dishonest. "Natural Medium Blonde." Can you really call haircolor "natural" anything? My natural color these days is truly a strange colorless shade of Blah. I've yet to see that on a box. "Natural Colorless Blah."

I accepted the haircolor thing as an inevitable addition to the monthly grocery list when I found myself clipping a coupon for it. Great. I'm in my forties, I color my hair and I'm clipping coupons. Life is good, eh?

At least I can find comfort in the knowledge that the great machine of Disney Inc. has embraced the concept with the "Animator's Palate." And that I knew about it before they did.

Three Month Check Up

Kevin's check up day at the cancer center. It's something of a no-brainer since they do all the blood work and schedule the scans while we're there for the check up. So there's nothing to review with the doctor as far as all the big stuff goes. Height and weight. Talk about where he is on side effects. (Still has alternating numbness and tingling in his hands and feet. Still sensitive to cold, which typically subsides by now.) She listened to his heart and lungs. Blood pressure is good. Dr. Skinner is going to give us the names of some gastroenterologists in the Dayton region. She chuckled over our tales of the "encounter" down in Cincinnati this week and agrees another doctor might be a better fit. She agrees that we should follow things up with Dr. Francis in Lafayette once he returns from Africa.
The cancer center was busy. Really busy, they've expanded the parking lot to make room. But still organized and efficient with none of that chaos which so unsettled Kevin at the other place. I'm glad to see the community is recognizing the skills of the center but sorry to see the demand for cancer care continues to rise. And rapidly. There were 3 new patients in for orientation during our relatively short time there today.
They all had that deer in the headlights look of still being in shock. Even mean old me wanted to hug them and reassure them they're in a good place. Cancer sucks.

Encounter with a Procedure

Kevin has a procedure scheduled next Thursday at a Cincinnati hospital.

"Procedure" is medical code for something more than nothing and less than everything. It usually includes pain, at least discomfort, waiting around and large co-pays.

Procedures come with co-pays that rival the down payment we put on our first house. Be prepared to front it before you even get to sign in at the desk. Kevin's had a year and a half of "procedures" now and I can see the bad economy having an impact already. Used to be enough to just sign that, yes, we would pay the co-pay. Then they wanted a piece of the co-pay up front as well as a signature indicating we would be forking over the remainder. Now they want the entire co-pay before the receptionist will give him a welcome.

At least they still take checks. I think the next move is going to be cash only. Maybe they'll gather the staff at the end of the work day and tip out everyone from the day's collection of cash co-pays.

Before you get to that point, though, you have to have several office visits to determine if you do, indeed, need a procedure and just which procedure you're going to get. This may involve an encounter.

Encounters have an exponentially higher price tag than office visits or appointments. You won't feel in in your office visit/encounter co-pay since that is set in stone by your insurance carrier. It'll slide in somewhere in the fine print of your procedure. In fact, if you have an encounter instead of an appointment, it's almost a guarantee that a procedure will follow, with a large co-pay and there will be some portion of it which is indefineably not covered by your insurance carrier.

I can guarantee you that Kevin's gastroenterologist bills for "encounters." Anyplace where the medical assistants, receptionists AND doctors are garbed in color coordinated medical attire will most certainly have encounters. Having the doctor show up wearing black trimmed in hot pink piping was a dead-on assurance that an encounter was in the making.

Should you miss your encounter with less than 24 hours notice, death being exempted, you will be billed for your insurance co-pay. Nevermind that the office can cancel on you at any time in the process, even after you've spent 30 minutes sitting in the waiting room.

Once your encounter has morphed into the inevitable procedure, your window for withdrawal shrinks dramatically. You have to give 7 DAYS notice to cancel or change your appointment or pay a $250 dollar cancellation fee.

Kevin's procedure was scheduled during yesterday's encounter which means he had about 2 hours in the freebie range to change his mind before the 7 day countdown began.

Of course when the low end of your intestines is mostly closed and you're living in pain and nausea, it's a pretty good call that you're going to show up. Assuming, of course, the week long wait for the procedure doesn't end with you able to play the get-out-of-jail-free card of being dead.

Playing Percentages

99% of Kev's medical team has been fantastic so far. Incredible. Talented. Compassionate. So we were overdue for an encounter with a jerk. Ther percentages caught up with us today.

Met with the gastroenterologist over here. The downside of small town life; there is one gastroenterology office here which is a satellite of their city office. We were cautioned about his personality by several nurses last year when Kevin was in the hospital.

Things were not exaggerated. He doesn't like questions, he likes people to just accept what he says and move on with it. He has one of those no medical degree, no business asking medical questions responses to patients/patient family. In his eyes I am the patient advocate from hell--the one who asks questions and insists on answers, not generalizations and brush offs.

Kevin was so mad he couldn't talk. I was so mad I couldn't shut up.

The plan now is for Kevin to have a sigmoidoscopy next Thursday where they will open the area using a balloon (he had to have this done last August too during a colonoscopy) procedure. Then they will inject the surgical site internally with steroids to see if that will impact the scar growth.

I've spoken to the surgical nurse of his doctor in Indiana who had another surgeon (Kevin's is out of the country) review Kev's chart and give the ok to doing this. He says it won't do any harm and will at least buy us some time until Kev's regular guy returns from overseas. I am certain Dr. Francis will not be harping about repeat surgery yet. (repeat surgery almost guarantees a permanent colostomy) and Kevin could have the same scaring issue with another surgery.

He's to continue with a cautious diet until next week. (What is it with this place and that whole wait-until-he's-seriously-sick-before-we-act approach??)

And the doctor answered his cell phone (his kid wanted picked up from some place) while he was examining Kevin. We've spent a lot of time with doctors in this last year and that was a first. I'm pretty certain he wouldn't have taken it well if Kevin had taken a call in the middle of the appointment.

Kevin is discouraged and worried. I am embracing being mad about the whole appointment, it smothers the worry! But at least Kevin is not feeling as awful as he did last Thursday. We've made it a week since he first showed symptoms and that's a good thing.

He has an appointment tomorrow with his oncologist for a 3 month check up. Which means he'll have a PET or CT in a week or so. We're hoping for a clear CT and a lowered CEA level in his blood work. CEA is the tumor marker they watch in his type of cancer. Above 3 is a worry.

We'll let you know how he's getting along. Thanks for the prayers!

Bump Watch

Kate called this evening.

She and Baby Gizmo are both doing well. She's gained 3 pounds in the last month. The ultrasound a couple of weeks ago looked very good; things are going along just as they should.

The big question on everyone's mind remains is it Gizmo or Gizmo. Kate held her ground--much to the disappoint of James, our baby daddy--and did not find out the sex of the baby. I would have liked to know too, but the delayed satisfaction is character building.

Kate says getting to be surprised when the baby is born is her reward for the whole deal.

Spoken like a woman who has yet to birth a baby. She and James will find out soon enough that there are plenty of surprises to go around with the entire process of childbirth and parenting. To be fair, they have pretty realistic ideas about the whole thing.

On the other watch in progress--Butt Watch--Kevin is hanging in there. Not feeling great, not completely down and out though. And he's a sport about living on juice and applesauce.

(I, on the other hand, am plotting a secret run tomorrow for a BigMac...)

John called again for a progress report. That perked Kev up considerably and they had a good conversation. I appreciate John far more than he knows!

Another 17 hours or so until the doctor appointment. I think he's going to make it.

Finding a Release

So much for waiting until next week for the doctor. Kev's feeling worse tonight. So tomorrow we call and plead for an earlier date.

Plan B is call the oncologist and see what she can do. Maybe try his internist too.

Plan C will take us back to Point A and the office in Indiana. They'll have someone on call for Dr. Francis.

I do not understand the 'wait until he's really sick' concept here.

Kev has put himself on a liquid diet to avoid teasing the beast within. Broth, juices, applesauce. To relieve the most immediate range of discomfort he made a supper of a bottle of that prep stuff you have to drink the day before a colonoscopy.

That's going to make for a long night once it kicks in somewhere in the range of midnight to 2 a.m.

Well, at least Kevin has a 'release,' so to speak. I'm going to have to go find something to smash in order to vent a little of my frustration about making him wait so long.

Monday Morning

Struck out with getting Kevin in to see Dr. Francis in Indiana. He's overseas on a mission trip.

A few selfish thoughts of "That's great...except when it isn't. Like NOW when Kevin needs to see you.." flitted through my mind. Briefly. This was part of why we chose Dr. Francis in the first place; he defines "healer" in many ways.

With the first team unavailable, we called the local clinic. (a little side note... the same office where I interviewed for a job last month. They didn't hire me. Should make for an interesting appointment, though. I get to see what I would have been doing being done by someone actually qualfied to do it...) One of the doctors saw Kevin last January when he was in the hospital here so Kev's already on the patient list and much of the detail work is in place.

They can't see him, though, until a week from Wednesday. (Apparently they should have hired more people...) He says he'll just be very careful about what he eats. Let's hope that's enough. I'll call his oncologist and get her to intervene if things get worse. What I'm not going to do is sit around like last year until he's horribly sick.

In the meantime, c'mon over for supper. I have big pot of ham and beans that Kevin isn't going to be eating. Good thing I hadn't made the cornbread yet.

Communication

Kevin feels better than yesterday and much better than the day before. Not great, but better. It's still looking like he might be in the early stages of some constriction from the scar tissue. We were warned this could be an ongoing problem for a while.

He's going to call the surgeon in Indiana on Monday. Dr. Francis will listen to what Kevin says and react quickly but not over-react to it either.

It's a difficult balance. Kevin knows how his body feels, what feels like part of this new normal thing his doctors talk about and what feels like part of the old problem. On the other hand, having had cancer--and all it's accompanying treatments--creates this reality of not feeling safe in your own body anymore. He can't trust it like he used to and it's a constant ebb and flow to decided what it's signals mean. Is this remnants of a side effect, new cancer or last night's nachos?

For once, I hope Dr. Francis's mission work has not called him overseas. Kevin and I both have great trust in his judgment and reactions and much less confidence in getting similar reactions here in Ohio.

When do you react, when do you not react? It's the cancer patient's nightmare. I suppose it's a communication thing. Between Kevin, his body and his mind. Between us and his doctors. So how do we clear up the static?

Brighter Day

Last night was better than the night before.

Sometimes that's as good as it gets and you're still very thankful.

Kev's not throwing up every half hour now. And he was sleeping for a couple of hours at a time by yesterday evening.

I can't tell what's up (or in or out) with him. Might be a virus, something nasty like rotavirus which was a mean monster when it would hit the daycare kids. Could still be the early warning signals of scar constriction. Kev's not sure yet himself.

We'll call the doctor today and see where we go from there.

One of Kevin's long time friends called last night with a New Year's greeting. Perfect timing. Kev was too sick to do more than nod when I told him John had called, but the call was a great boost to me after a day of silent worry. And John usually makes me laugh. "Well, I've never prayed for someone to have the flu, but I can do that now..."

Thanks for the smiles, John, if you're reading this. Kev's feeling a little better, today looks brighter...Happy New Year!

Auld Lang Syne Revisited

Deja-vu.

Kevin is sick. All of the signs of some nasty flu or virus thing. All of the signs of a bowel constriction.

He's in a lot of pain and says, when I can get him to say anything, that it feels like the now familiar pain of scar induced constriction.

Normally I would lean toward the flu/virus side. But 'normal' was redefined by cancer this past year.

I can't help but think of last New Year's Eve and morning which we spent in an emergency room with the early warning signs of a bowel constriction. One that sent him back to the hospital, seriously ill, two weeks later.

Although it was certainly an interesting collection of people gathered in the ER that night, I don't want a repeat visit on this first day of 2009.

So it's back to the question of when is sick, just sick and not a premonition of some awful event in the works? I had hoped that the months since he finished treatment would have brought some confidence in this area. Instead I realize that the beast of cancer anxiety, though tamed on a day to day basis, is by no means eliminated.

Auld Lang Syne, times gone by, Revisited.

Happy New Year!

May we make peace, know peace and live peace throughout the
coming year.