Monday, December 31, 2007

Taking a Piece of You With Me

"We shall not cease from exploration
and the end of all our exploring
will be to arrive where we started
and know the place for the first time."
---T.S. Eliot

The new year looms. Do we say goodbye or hello? Are we departing or arriving?

Both. All.

Goodbye to what's become familiar. Hello to the new familiar

The comings and goings that define our life, ourselves. We were here a year ago on this day. Now we've returned to this point again, different and yet the same. Changed forever in many ways. Always familiar in others.

When Kevin used to leave for a work trip, he would look back repeatedly as he drove away from the house or walked away in the airport. I asked him once, "Why?" "To take a piece of you with me," was his reply.

We talked to Hannah and Andrea after Mass this week. We talked about saying goodbye when we left their house after taking over their Christmas gifts.

Hannah asked, "I saw you turn around and watch us when Daddy Kevin drove away. Why did you watch us?" "To take a piece of you with me," I said. She hugged me. I guess I got the answer right.

So today I am looking back to take a piece of this place, this time, these memories with me.

Sunday, December 30, 2007

Hello and Goodbye

So we're winding down 2007--The Year of Great Change In Our Lives--and moving into 2008.

We moved much of our household to Ohio.


Having filled our apartment with boxes, there is still enough stuff here in the house to live comfortably when we're in Lafayette. The garage and outside stuff are untouched and the attic is pretty full still. There are entire rooms of furniture still intact here in the Lafayette house.

Kevin's been asked to stay over here in Indiana for a few days and visit a vendor in Noblesville. So we'll be here a little longer than we had planned. I guess it's a good thing. I don't know anymore though. I'm not sure what I'll do with myself next week while he goes to work. Practice not going to work, I guess.

We are looking forward to the extra chances to celebrate Mass at St. Tom's and a little more time with friends and family. All of that will be impossible to replace.

Saturday, December 29, 2007

Stories, Books and Life--December 2007

December 2007--The bookcases from our room have been moved to fill in empty spaces in other rooms as we have slowly begun the rearrangement/relocation of our belongings. The kids Christmas books fill 3 shelves in Josh's bedroom. Auntie Claus is a favorite--we read it a couple of times a week. The Bear Who Slept Through Christmas and the pop-up Night Before Christmas are huge favorites too. Our other books are packed into boxes labeled with "Indiana," "Ohio" or the new owners name scrawled across top and sides. We'll be downsizing our book stash. Kevin's bedside table has a James Herriot Christmas story and his iTouch resting on it. My favorite Christmas read, The Autobiography of Santa Claus, is on my side of the bed. I like to read it one chapter a night beginning December 1st. There are no cancer research papers and no cancer related books to be seen. Cancer is not invited to our celebration of Christmas.

Friday, December 28, 2007

Home (I think) Again

Back home again in Indiana (that's catchy, no wonder someone wrote a song about it)

We met with Dr. Skinner in Ohio before heading home today.

Home in Indiana. That's going to take some adjusting; where is "home"?

Anyway, Dr. Skinner is in favor of Kevin using Xeloda instead of 5-FU and the infusion pump. If our insurance will approve it. Apparently it's outrageously expensive.

We'll know if a few days how much the insurance will cover, if any. Kevin and I had a little chat about how much it's worth out of pocket to us. He threw out one number, I raised the ante, we settled on something else.

I figure it's worth two or three times that much for his comfort and emotional well being. Forty-six hours at a time with the infusion pump had him climbing the walls. 24/7 for weeks and weeks isn't going to do him well.

Some things are about a lot more than money. This is one. Timing sucks since I am officially unemployed now but we'll find a way.

We met Patrick, Joanie, Zelda, Johanna and Charlotte for a goodbye dinner tonight. Our usual Saturday night after Mass group. It may be a while before we get to do this again. They had a gift for us. A beautiful prayer which they all signed and Patrick matted and framed.

It's so hard to leave.

Thursday, December 27, 2007

Xs and Os, Hugs, Kisses and X Marks the Spot

We were at the cancer center twice today. Once in the morning to meet with Dr. Ling and a second time in the afternoon for the simulation for Kev's radiation treatments.

This involved Kevin having multiple CT/simulation scans to determine and mark precisely where the radiation will be directed. Many places use small permanent tattooing to mark the spots. Here they use a water resistant marker (essentially a Sharpie) and covered the Xs and Os with clear tape. He is to be careful about bathing so as not to rinse them off before radiation begins. The technician will remark him as needed during treatment.

The intersecting lines, circles and Xs drawn across his abdomen and hips will take some getting used to for me. Just a vivid reminder of what may still lurk within.

I hate cancer.

Somehow I need to replace the image of more cancer squatting , uninvited inside him, with a more positive image. Maybe the Xs and Os can be hugs and kisses making him well?

Nah. (shudder) Doesn't work for me. Too fluffy creepy.

I'll have to think longer about this.

Anyway, we like Dr. Ling and, while Kevin was in for his CT scans, I got a line on the possibility of him using a pill form of 5-FU instead of a continuous pump. I'm going to research it a little and definitely bring it up with Dr. Skinner when we meet tomorrow.

Kev's going to want to go with the pill if it's remotely possible. Any baggage it carries will weigh less to him than the pump. Especially 24/7 worth of pump for 5 to 8 weeks.

Daily radiation treatments begin on Monday, January 7th. The new 'normal,' huh?

Gotta work on adapting to a flexible definition of 'normal.' And those crappy Xs, Os, lines and squiggles.

Did I mention how much I hate cancer?

Wednesday, December 26, 2007

Moving Day

We--and an entire truck full of boxes-- rolled into town this evening. The plan was to unload the truck tomorrow between appointments at the cancer center.

So much for plans. Kevin began unloading soon after we got here. I tried to wait him out by not helping--hoped he would give in and let it go until help arrives tomorrow. No such luck though. Eventually I caved and we emptied the truck.

There's a path through the apartment. And a vague plan about what is where.

Paige, Josh, Gina and Travis helped us pack up in Indiana this morning. They were a real blessing and we're so appreciative for their help. Josh really through his little almost 6 year old heart into the effort. Kevin didn't have to carry anything although it bothered him to be in the role of observer. Kate, with her customary impeccable timing, arrived just as we finished loading and were ready to go to lunch.

I am going to head for bed now. It was a long day and we have appointments scheduled tomorrow with Kevin's doctors.

Tuesday, December 25, 2007

Merry Christmas Morning

Merry Christmas!

Our home is quiet after the bustle of getting home from Midnight Mass. Everyone else is asleep and I am savoring the last night of the anticipatory silence that comes before Christmas morning breaks with a flurry.

We spent the afternoon and evening at the farm. It was so nice to be there with all of our girls, their boyfriends and my sister and brother-in-law. Kevin napped off and on through the day; he wanted to be certain to have the energy to go to Midnight Mass tonight.

Even with the sadness of goodbyes after Mass, it was wonderful to be at St. Tom's tonight.

And all three girls, as well as the boyfriends, went with us. We filled an entire pew. We were quite a crew; our mix of cradle Catholic, convert Catholics, non-practicing Catholics, a fledgling Buddhist, a Hindi and an Undecided. We were normal.

The last 5 months have left me with a wonderful appreciation of normal.

Sunday, December 23, 2007

Stories, Books and Life--December 2007

December 2007--The bookcases from our room have been moved to fill in empty spaces in other rooms as we have slowly begun the rearrangement/relocation of our belongings. The kids Christmas books fill 3 shelves in Josh's bedroom. Auntie Claus is a favorite--we read it a couple of times a week. The Bear Who Slept Through Christmas and the pop-up Night Before Christmas are huge favorites too. Our other books are packed into boxes labeled with "Indiana," "Ohio" or the new owners name scrawled across top and sides. We'll be downsizing our book stash. Kevin's bedside table has a James Herriot Christmas story and his iTouch resting on it. My favorite Christmas read, The Life and Adventures of Santa Claus, is on my side of the bed. I like to read it one chapter a night beginning December 1st. There are no cancer research papers and no cancer related books to be seen. Cancer is not invited to our celebration of Christmas.

Friday, December 21, 2007

We Changed The World

The daycare is closed.

A lot of the "stuff" of it is gone. Some sold, some given away, some used up in careless abandon knowing we wouldn't "need" it for another activity next year.

There were some tears, but it wasn't as bad as it might have been. The kids and parents have had time to adjust to the idea if not the reality. The excitement of Christmas and family gatherings has their attention.

The kids and I finished the cakes begun yesterday for the holiday meal at St. Anne's. I'll miss our annual Thanksgiving pie baking and Christmas cake making for the soup kitchen. The kids so embraced the idea of preparing food for families who might otherwise have no celebration. Watching them mix and bake and clean up with such dedication fed my soul as surely as the cakes fed families.

We had a party and gift exchange. The kids all brought gifts for one another and had great fun in giving to their friends. The parents gave me generous and heartfelt gifts.

All the families worked together on a quilt with pictures and funny references to our time together. Haylee's mom organized the effort behind the gift. It is incredible. I know I will look at it for years to come and know joy.

I want to be replaceable. I want them to all be with providers who love them and enjoy them as much as we do. Providers who care about who they are now and who they will become.

I don't want to be replaced. I want to stay in their hearts, their memories as surely as they will stay in mine. I want them to remember these years, these moments, and know we changed the world together for a short time.

Thursday, December 20, 2007

The Gift of Knowing

I received an incredible gift in the mail.

Shannon, our online friend who is a prison chaplain and all around extraordinary woman, crocheted and gave me a beautiful prayer shawl.

I was speechless--a rarity--when I opened it.

The shawl--the touchable, tangible part of the gift is beautiful all by itself.

The intangible part--the making, the giving, the knowing--is what stole my words.

Shannon knew that I needed something for me. Something quiet and private. Something which makes a place that will be familiar in a changing life, comforting, mine where I can take my thoughts, worries, resentments, celebrations and thanks.

The gift is that she knew and she did something with that knowing.

Monday, December 17, 2007

Popcorn Tears

Hannah and Andi folded and stamped the remaining Christmas cards tonight. It's one of those annual things they love doing.

I love to watch them. A few years ago when this began, it was a very hands on event for me. Trying to stay one step a head of eager little hands. Gradually they've taken over this part of the task entirely. My job is to provide popcorn, drinks and a Christmas movie for our after-cards celebration.

I have gotten six more of these evenings than I expected when Kevin began to work in Ohio. That's a good number; we've made some serious memories they can take into their grown up years.
The years with the littles, especially these two beautiful girls, have been a blessing.

I am thankful.

I am also sad and I lie to the girls about getting popcorn salt in my eyes as I wipe away tears.

Thursday, December 13, 2007

Merry Christmas, Cancer

The quest for normal continues.
I have our Christmas cards designed and I'm working on the printing. Kevin urged me to give up the task of doing our cards this year.

It became a quest for me though. If I bought the cards then it was another thing cancer won. Which means another thing I lost.

I'm freaking tired of losing to cancer.

Tonight I mailed the daycare card. The parents look forward to these each year. The kids look forward to posing for the pictures and seeing themselves transformed into a card. This is the last one for....well, maybe forever.

I'm pleased. Merry Freakin' Christmas, Cancer. I win.

Saturday, December 8, 2007

Christmas on Campus

We met some of the daycare families at Purdue's Student Union for the campus Christmas party.

Breakfast with Santa, crafts, lots of photo moments. I came home with a full memory card in my camera.

We couldn't eat with the kids--still have to avoid the public aspect of buffet style serving--but that worked out well. We were able to corral some of the craziness so the parents could get a bite or two of their own breakfast.

It was a joyful time full of laughter and silly moments with the kids. Kevin misses seeing them daily now that he's back to a regular Ohio based work week and he was glad of the opportunity to spend some time together.

Haylee wore a dress I made her. "Miss Lorri, do you see I am bee-U-Tee-Ful," in her indoor voice--which is only slightly less below her big outdoor voice.

EVERYONE in the Union knew Haylee was bee-U-tee-ful!

She was. And so was the morning.

Saturday, December 1, 2007

Happy Advent, Anniversary

Today is one of those golden days.

Kevin is feeling well. Feeling relieved to be through this portion of his treatment. The next phase is far enough away that we haven't mustered up the anxiety which I know will come later.

Today is the beginning of Advent. The beginning of the new church year.
Today is the anniversary of our marriage.
Today is the anniversary of my First Communion and the anniversary of Kevin's return to The Table after a 10 year absence.

I love it when anniversaries fall on the same day of the week as the original.

Six years ago this evening the Advent candle was lit before Mass. I made my Profession of Faith and received Communion for the first time. Our ten year old, been around the block a few times, civil marriage was convalidated in the Catholic Church and Kevin received Communion after a ten year absence.

St. Tom's is special during winter evenings. The shadows are deep around the edges, it's mysterious without being dark or frightening. Magical. Holy.

It's a good place for new beginnings.

Friday, November 30, 2007

Stories Books and Life--November 2007

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

Motivate or Annoy but Keep Him Engaged

I have been sending Kevin motivational emails.

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

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

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

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

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

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

Today's motivate/annoy email:

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

Thursday, November 29, 2007

Done. Here.

Done.

We said our goodbyes to the clinic here today.

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

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

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

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

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

Wednesday, November 28, 2007

Tell Someone What You Need

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

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

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

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

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

Tuesday, November 27, 2007

Looking Toward the Break

Going better this round.

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

He feels more encouraged and in better spirits.

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

Monday, November 26, 2007

Cycle 2-15, Tired Times

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

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

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

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

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

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

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

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

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

Sunday, November 25, 2007

Making Goal

Sunday night after our 4 day Thanksgiving weekend.

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

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

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

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

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

Friday, November 23, 2007

Generous Prayer

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

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

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

Their prayers for Kevin and their prayer requests.

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

Thursday, November 22, 2007

Giving Thanks

Thanksgiving Day.

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

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

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

Tuesday, November 20, 2007

Tough Love

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

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

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

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

Stupid reasoning. Possibly. But mine.

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

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

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

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

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

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

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

I know my husband.

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

His biggest fear is disappointing me.

Tough love for both of us.

Sunday, November 18, 2007

Kevin is back in Ohio tonight.

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

He's not complaining about the extra week.

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

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

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

Saturday, November 17, 2007

The Price of Laughter

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

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

Kevin rolls his eyes.

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

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

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

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

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

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

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

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

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

Friday, November 16, 2007

Mid-Treatment Check-up, 3

Check-up day again.

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

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

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

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

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


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

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

Thursday, November 15, 2007

Midnight Prayers

My phone rang shortly after midnight.

It was Kevin.

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

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

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

My prayer this morning is simply "Thank you."

Wednesday, November 14, 2007

This Time Will Pass

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

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

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

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

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

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

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

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

Monday, November 12, 2007

Chemotherapy Primer III/ Rest & Recovery

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

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

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

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

It's a vicious circle.

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

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

Sunday, November 11, 2007

Re-evaluating My Treasure

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

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

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

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

It feels like I am leaving behind my heart.

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

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

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

Saturday, November 10, 2007

A New Level of Anonymity

I am the wife of the guy with cancer.

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

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

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

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

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

"Do you know the woman who makes the Santas?.....I'm not sure who she is but her husband has cancer...."
My family still lives in town. I'm used to being my sister's sister or my father's daughter at this show.
This year I'm the woman whose husband has cancer.
It's a new level of anonymity.

Thursday, November 8, 2007

Two Worlds Collide

I understand George Costanza's fear.

Kevin's two worlds collided in our house today.

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

Not so.

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

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

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

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

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

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

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

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

Wednesday, November 7, 2007

Day Three. Again.

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

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

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

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

Tuesday, November 6, 2007

Treatment 3, Day Two

Cycle 2-1, Day Two

This has been a rough one for Kevin.

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

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

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

Monday, November 5, 2007

Cycle 2-1; Warm Drinks

Chemotherapy #3.

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

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

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

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

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

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

Saturday, November 3, 2007

The Hard Drive of My Heart

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

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

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

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

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

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

One magic day stored in my heart.

Friday, November 2, 2007

Mid-Treatment Check-up

Mid-treatment check-up.

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

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

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

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

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

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

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

Peaceful Noise

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

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

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

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

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

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

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

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

Wednesday, October 31, 2007

Stories, Books and Life--October 07

October 2007...Kevin's side of the bed is cleared of Harry Potter and instead his iTouch and a set of headphones are resting on the table. My side of the bed is now teetering with the unfinished Potter tales and a pile of research about various chemotherapy drugs. The kids shelf has a well used pile of Halloween pop-up and counting books. Ten Little Monsters. The dust has grown thicker on the "grown-up" bookshelves. One of these days things will settle down and I'll tend to both books and dust. For now chemotherapy and the re-arrangement of our lives takes center stage.

Just In Case

Just when I think we're beyond the whole costume/Halloween thing, Kate comes home. She raided the garage and my sewing stash a few days ago to work on her costume. Today she dropped in to show off her (magnificient if I may say so) results.

She's doing the downtown Halloween music scene as a raven. James and the band have a show at the Brew Co. and Kate plans to join the costumed revelers.
The daycare kids are pumped about trick-or treating. Even though we had a party here just days ago, they'll all show up tonight in costume. They saw me fill the candy bowl today; they know the SWAG is good here on October 31st. Usually a few former daycare families bring their older kids by and it's a nice little family reunion.
Josh called to tell about his Halloween haul. He and Landon made the neighborhood scene. The neighbors, Mac and Nuala, who are every bit of 80 years old, dressed up to hand out candy to the kids.

I asked Josh if he would save some tootsie rolls for me. His mom called later, laughing. They were trick-or-treating a friends house and Josh noticed he had gotten a handful of tootsie rolls from them. He very politely asked if he could have some of the other type of candy in their bowl too, explaining,"My grandma takes all of the tootsie rolls."

Kevin made his annual candy purchase "just in case." He's been buying a huge bag of candy bars for 5 years worth of "just in case" a trick-or-treater stops in. I'll be picking the wrappers out of the side pocket on his car for weeks to come.

And me? The neighborhood kids cleaned out the candy stash two hours ago. I shut the porch lights off, taped the blinds shut and hunkered down with the TV on mute.

It's just me and a bowlful of M & Ms and Tootsie Rolls. It's possible a few brave souls will go ahead and knock on my darkened door so I saved the M & Ms and Tootsie Rolls. For them. Just in case..

Monday, October 29, 2007

Daycare Halloween

Halloween in the daycare.

Time to dress up, play "Stick the Wart on the Witch," eat popcorn balls and scavenge for bags of candy.

It's chaotic. It's messy. It's sticky. And the kids will be bouncing off the walls from the sugar rush that lasts a week.

I love it and I'm going to miss it.

Friday, October 26, 2007

Homecoming

Homecoming weekend at Purdue.

Even feeling tired from chemotherapy, Kevin didn't want to miss the annual Homecoming Night Parade.

What he didn't want to miss is the annual spectacle of watching some of our littles and their parents enjoy the Night Parade.

Haylee, Evan, Hannah and Andrea had a blast even through the occasionally misty rain. They gathered candy, posters, footballs and balloons from the assorted student groups, cheered with the cheerleaders, marched with the band.

Kevin had as much fun as the kids.
The students and campus life are among the things we'll miss most in Ohio.
For now, though, we're going to bed so we can get up bright and early to catch a glimpse of the early morning costumes of the Breakfast Club in the Village.

Thursday, October 25, 2007

Network for Information

Kevin had a Neulasta injection today.

The information we got from the clinic previous to the injection was limited to a date and time on the schedule sheet with the entry "injections."

WTF. Cancer has so expanded my embrace of the occasionally satisfying expletive. WTF. Isn't he entitled to a little more information about what's being done to his body?

I waited until after his treatment this week before I called. Gave the benefit of the doubt--surely someone would sit with him and explain..."Now, on Thursday you're going to come in for....And the reason you do this is..."

Nope. Didn't happen.

I, of course, called then to find out more--what injections and why. Bugs the heck out of me that we have to run down information like this but, ok, this is how things are done. In any case, once we had the name of the drug it was easy to research it through our growing network of up to date information. The internet, a handful of friends and friends of friends who are nurses, radiologists, dieticians or have had recent personal experience with this cancer treatment.

Tip for the Day---Networking for information is your friend if you or someone you love is ever diagnosed with cancer. Don't be shy, don't be so polite you walk through it in dumb-struck silence and don't ever be afraid to ask until you get an understandable answer. Ask someone else if your first line of information (your own doctors office) turns out to suck at communication.

Kevin's chemotherapy is myelosuppressive. That means it kills some healthy blood cells as well as cancer cells and will eventually cause lowered blood counts. Back to the earlier explanation of chemotherapy not knowing the difference between cancer cells and healthy cells so it targets all rapidly dividing cells. (This is something I predict will change as research is showing promise of ways to target only the cancer cells.)

White blood cells (there are several kinds of white blood cells) help fight infection. Neulasta is a white cell booster that will help his immune system recover and lowers the chance of him getting an infection.

It's given 24 hours after chemotherapy is completed (for Kevin this means after the infusion pump comes off) and is usually given once a month. So he'll get an immune system boost after every 2 treatments (every complete cycle).

Neulasta doesn't come with a lot of baggage of its own. There are always some possibilities of severe reaction, but that's unusual. Some people have bone pain because it works within the bone marrow but it's usually minimal and manageable with Tylenol.

This is a big improvement over what chemotherapy patients experienced in years past and should increase the liklihood of Kevin staying relatively healthy through treatment.

Wednesday, October 24, 2007

Two Down

Cycle 1 is complete. Two treatments down.

Mary and my father stayed with the kids today while I went with Kevin to get the infusion pump off. The kids were thrilled to have Ms. Mary there again. They'll miss her because she and my father leave soon to winter in Arizona.

By Tuesday evening Kevin is becoming jumpy about wanting the pump off. Wednesday arrives and he is practically climbing the walls.

So the extra waiting at the clinic really wears on him. Sitting in the infusion room for 45 minutes before someone can get to him is barely tolerable for him. Today the nurse/pharmacist noticed him waiting and did the job herself. She commented that he shouldn't have to wait like that. I was loud in my agreement.

The place seems chronically understaffed and a little on the chaotic side.

The pharmicist/nurse did notice the irritation the tape is causing on Kevin's skin and told him to insist on something else next time he is in. I really appreciate this sort of observation and action. This is the kind of care (minus the waiting) that I want for him.

He's more tired today than before and the headache is lasting a little longer. We've found he does ok as long as we keep to a Tylenol schedule of no more than 4 hours. Keeping the headache at bay also helps keep the nausea down. He's been able to manage the nausea by managing the headache and eating smaller meals more often. The cold sensitivity has increased in his mouth and his fingers. We have gloves stashed in all the cars and near each door and the refrigerator.

He's feeling a little more discouraged about treatment and wishing out loud that he hadn't startead it.

Tuesday, October 23, 2007

Day Two, again

Kevin is doing ok. Some side effects like a constant headache and mild nausea but he is able to work through them. Keeping something in his stomach seems to help ward off the nausea.The kids like taking something to him during their morning and afternoon snack time. Controlling the headache helps with the nausea too.

The cold sensitivity is increasing in his mouth. He had a cold drink and immediately spit it out because it hurt inside his mouth. Surprised the heck out of him. He says it's a very strange sensation.

The infusion pump annoys him. It's heavy to carry and he has to get it positioned right or the strap causes a headache. It's louder than we thought it would be---at night I hear the little whirrr as it delivers another minute dose then I wait to hear the whirrr again. It's hard to step out of once you let that start happening!

He was chatty again through much of the night. I'm certain it's the Decadron in his pre-meds that gets him a little wired through the first night or so. He reads a while, watches a movie on his iTouch. And talks. A lot.

He continues to work full days (10+ hours a day) here at home during treatment week. It seems to be working out although he hasn't had the time to catch up as much on paperwork projects as he hoped. A lot of phone and computer conferencing as well as email to handle.

Two snacks a day and lunch served at his desk. It's not a bad deal at all.

Monday, October 22, 2007

Cycle 1-15

Chemotherapy #2.

Kevin is tired and has a headache again. The predicted cold sensitivity is growing in his mouth and fingers.

Kate was with him at the clinic today; she doesn't have class on Mondays. Kevin could manage on his own but I want someone with him to ask the questions he's too tired to ask, to hear what he misses and generally remind him that he's not alone.

It was good that she went. I wanted a different perspective on how things are done there. And I think it's important for the girls to see firsthand what he is going through.

Kate's observations were similar to mine from two weeks ago. A lot of unnecessary waiting that extends his day and wears on him.

Kevin came home and laid down for 30 minutes. Beyond the effects of the drugs, the entire experience of going to the clinic just exhausts him.

He's eating ok and continuing to walk twice a day when possible. He had a conference call late this afternoon which did as much as anything to get him awake and animated! Work is great therapy for Kevin. He loves what he does and he does it well. Work invigorates him and lets him focus beyond what is going on inside his body.

Friday, October 19, 2007

Seeing Our Blessings

Kevin had an appointment with the nurse practitioner this morning.

Paige and Joshua came over to help with the kids. School is out today for Josh and for Hannah and Andrea here. I was a little concerned about Mary and my father dealing with the girls coming in from school at lunch time so I appreciated Paige's offer to help.

Mary didn't want to miss her time with the littles, though, so she took charge of the youngest kids while Paige and Josh did the backyard scene with the older ones.

Kevin is doing well. We had few questions for the NP. Our trust in his willingness and ability to answer is a little compromised at this point. We've pretty much come to the conclusion that commuincation is bad enough in the office that we either hold questions until Kevin sees the doctor or we research the answers for ourselves.

In any case, the NP did give Kevin a thorough check-up and was encouraging about Kevin's response to the treatment so far. He was clearly surprised that Kevin has been working and traveling to do so. But he was very encouraging about Kevin doing that if he feels able and interested in doing so.

The doctor's side of the practice doesn't come with the chaos and tiring waiting of the infusion side. If she or the NP have an emergency with a patient, things can get long, but it's good to know Kevin would get that kind of priority response if he needed it so that sort of waiting takes less of a toll on him. Today was a quick in-out deal which went a long way to boost Kevin's spirits.

Mary was reading to the littles when we came in and Paige had taken Josh and the girls out for pizza so we came home to a quiet house. My father was puttering around with the tuning on my VW, finding his own special way to help Kevin.

The kids barely notice me when we return. They love having Ms. Mary here! Ella and Mary are especially close. I notice Ella making a beeline straight for Mary's lap when she sits down on the floor to read the kids a story. And Mary loves Ella's gentle demeanor.

It's been nice to see our family work together, each within their own talents, to help us. All of this cancer journey has been eye opening and sometimes what it has done is allowed us to see our blessings.

Thursday, October 18, 2007

Perspectives

Kevin is on his way home from Ohio tonight.

Physically, he did ok on his own this week. Very little side effect stuff going on. Some fatigue.

It was good in many ways for him to be there at work instead of working from home. A different level of involvment and getting things accomplished. Work keeps him busy and thinking of something other than chemotherapy and cancer.

Emotionally it was a hard week for him. A lot of change happening. Chemotherapy, closing the daycare, not being able to do much to help get the yard and gardens ready for winter, nights alone magnify the aches and pains of recovering from surgery and chemotherapy.

Right now we see time in a different perspective. The nights until I've moved there and am with him full time seem endless to him. The weeks left to be with the daycare kids, pack up 30 years of a household and rearrange the details of life seem to fly by to me.

Wednesday, October 17, 2007

Kevin's Work Days

Kevin has been at work in Ohio this week.

He says he's feeling well. Tired but not extremely so. The headache and accompanying nausea are gone. His port itches and there are still red tape marks. That sensitive Irish skin may object mightily to this assault.

He's eating the meals I prepared. He worries about choosing the right things to eat so we decided to simply go with meals I prepare here at home. He carries a cooler to Ohio then freezes/reheats as needed. It's worked well for the 2 weeks we've done it.

Lunch meetings at work are a challenge but the people there are so good about being aware of his needs. There are several former cancer patients who know the drill. Along with the mid-morning/afternoon applesauce, he's taken a few of the ready to heat meals which don't require refrigeration for days he can't get away at lunchtime.

Our cabinets are suddenly full of single serving snacks, applesauce, pudding and juices.

There are a couple of people who check on him. Close the office door, sit down and say, "Now tell me how you're really doing" kind of checking. This eases my mind considerably and I am filled with gratitude.

Sunday, October 14, 2007

A Leap In Faith or Foolishness?

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you" Deu 31:6

Do not be afraid or terrified.

I read this early this morning and thought "Bullshit."

I am afraid of cancer. Afraid of the changes it demands in our lives. Afraid to go and afraid to stay.

Kevin's initial argument that our friends, family, our support system are here is a solid point. And we've needed the presence of these people. He doesn't want us to be alone, he doesn't want me to feel alone.

And then I see how much effort it costs him just to go to the clinic here and I know there has to be a better place for him in his treatment.

And we won't be alone.

I don't know if this is a leap of faith or foolishness. There haven't been many obvious "right" answers in much of the recent months.

I do know there are some things we take with us wherever we go. Our beliefs, our faith, that God will not leave us alone.

Friday, October 12, 2007

Hard Decisions

After a lot of talk and prayer, lots of prayer, I've decided to close the daycare in order to better meet Kevin's needs during the coming months.

It's a lot of things--the travel to and from Ohio and the toll that's going to take on him, the appointments I can't go to with him, the amount of time I have to ask someone from my family to sub for me here in the daycare and the oncology clinic here.

My father and Mary will be heading to Arizona soon so I won't have them to stay with the kids for an hour here and there while I go with Kevin to appointments. I can't expect our daughters or my sister or brother-in-law to continue rearranging their work days to accomodate my desire to keep the daycare open.

The clinic just doesn't feel "right" for him, for us. He feels overlooked at the clinic and finds the chaotic nature of the infusion area unsettling. The nursing staff is very nice and caring but also seems over loaded. A lot to do and not enough of them to do it.

And Kevin needs me. He just needs me to be available, to put him first.

I told the daycare families today. Two moms cried. One thought I was kidding and I had to keep assuring her that I was serious.

It was awful, gutwrenching. I didn't want this to turn all of their lives upside down too.

I'll be going to Ohio so Kevin can continue his treatment and his job with less travel and, hopefully, less chaos in his treatment weeks. Our last day of daycare will be the Friday before Christmas. I'm closing for the holiday break as usual but I won't be reopening in January.

Hannah caught on to what is happening. She crawled up on my lap to ask, "Who is going to take care of us?"

I don't know, Hannah. Someone wonderful. I'll help your mom find someone wonderful.

There aren't any easy answers and I don't have a plan. Not even a safety pin.

Thursday, October 11, 2007

My List

I have a growing list of concerns. A doctor or clinic can be very capable but still not be a good "fit" for a particular person. I'm not sure this is the best place for Kevin. Maybe it's more general; maybe chemotherapy is like this everywhere. What the hell do I know about it.

A high patient/nurse ratio means a lot of tiring waiting for each patient. Forty-five minutes while an IV beeps notice that it is finished. Another 45 minutes before they get back to him with the infusion pump. His 3 1/2 hour day which had morphed into 4 1/2 hours was actually 5 1/2 hours.

Communication is poor. No explanation about accessing his port this first time. They just did it. No one double checked him and his medicine by name and birth date. No one told him what he was getting, just popped his port and started hanging IV bags. I asked every time and wrote down drugs and times, but the margin for error seems great to me. And we were given no home care instructions. A little information and a hand written phone number for getting help if something comes up with the pump. Nothing about handling nausea or other side effects at home. It felt very strange to be sent out with just a "See ya Wednesday" and a wave.

The oncologist was nowhere to be seen. The nurse practitioner was cutting through the infusion area once and responded to Kevin's nagging IV beep but never even looked at the guy hooked to the machine. Not even a 'hello.' That angered me. It was rude, it showed a complete lack of compassion for what this man was experiencing for the first time today and it was plain and simply bad customer service.

It's crowded and intense in noise and activity. There is really no room for someone to be with a patient although the nurses do not in any way make you feel like you're in the way. But you are. The windows are small and high on the wall which contributes to the closed in feeling. It smells intensely 'chemical' in there.

There's nothing horrible on my list. I know this. Cancer patients are already enduring so much though. They deserve better for having to endure so much for so long with nothing but uncertainty at the outcome. It's not how I want him treated. He's not part of a herd. He's one. My only one and I want them to know this.

I saw more than the effects of chemotherapy itself wearing on Kevin. The whole situation added to his stress. He doesn't need more to get through.

Wednesday, October 10, 2007

Round One, Cycle 1-1. Done.

My father and Mary came over to stay with the kids while Kevin and I went to the clinic this afternoon to have the infusion pump removed.

He's really tired tonight. Some of it seems to be that he can finally relax and sleep comfortably having gotten through this first round--and having the infusion pump off is a tremendous relief to him. By mid-morning today he was just antsy with anticipation.

We waited a long time at the clinic before someone was able to get to him. The pump was beeping its agreement that it was time to be done. Forty-five minutes is too long for Kevin to sit there for something that should have been a 15 minute event. The nurses are all always busy; there seems to be a large patient to staff ratio.

I am, again, really bothered by the disorganization and poor communication at the clinic. The nurse taking Kevin's vitals asked about his medications. Kevin can't hear when someone talks with their back to him--we have repeatedly mentioned this at appointments. He doesn't like asking for things to be repeated so he just agreed with what she said. I heard a medicine in the list, though, that he doesn't take. I asked about it. The nurse was very insistent that it's a prescription Kevin has even if he hadn't used it--it was listed on his chart. Turns out the nurse practitioner was supposed to prescribe an anti-nausea drug to be filled after that first chemotherapy just in case Kevin needed it at home. That didn't happen, we were sent home with nothing.

I suppose it all worked out since Kevin managed without the drug and since we are commited to him going without extra drugs as much as possible. But what if he HAD needed it in the middle of the night? And it was listed in his records as having been prescribed. I don't want those kind of inaccuracies in Kevin's care and worry about what might be missed when I can't be there to hear for Kevin.

In any case, we got the prescription and had it filled today. Kevin doesn't want to take it but I think it's good to have the Compazine on hand in case he needs it at some point. The prescription was for 100 tablets with 5 refills. Clearly, the clinic expects him to need it.

As far as side effects, the tiredness and the ongoing headache are the most dominant. He feels a little nauseous but thinks that has to do with the headache as much as anything.

Kevin went this morning on his own to see Dr. Francis, his surgeon, for a 6 week check up. I hated being unable to go with him, but I knew he would be fine in the capable hands of Dr. Francis and his office staff. I could only get someone to sub in the daycare for one period in the day and it was better to go with him to the oncology clinic this afternoon.

Dr. Francis says Kevin is doing great--he was impressed with the 2 miles a day Kevin is walking. He reiterated his encouragment about doing chemotherapy as an extra caution. Said something about it almost guaranteeing a cure in Kevin's case.

That's what we want. A cure. An almost guarantee.

Tuesday, October 9, 2007

Happy Birthday, Kevin

Happy Birthday, Kevin!

He worked a long day today of phone and computer conferencing. The conferencing arrangments seem to work well. Although I did notice he likes to pace while he talks on the phone and he has to adjust that tendency to the confines of the infusion pump and tubing.

He's not asleep yet. And he didn't take the afternoon nap we had planned for him. He was playing .

He has a new toy for his birthday.

I wanted him to have a fantastic gift. Something great. Something to distract him a little through the coming months.

I managed to get one of the new apple iTouch things for him. They're not even in stores yet. I don't really know anything about it other than that it's the latest and greatest in electronic gadgetry.

Kev loves electronic gadgetry.

So he's propped up in bed, infusion pump beside him, reading the online manual and programming his iTouch. And eating chocolate covered raspberry jellies.

The side effects of chemotherapy haven't shown up too much. Some annoyances but nothing devastating. It would be nice if things would stay this way.

He has an ongoing headache and some stuffiness. Last night he talked until the wee hours of the morning. Chatted off and on all night, almost non-stop until 3 AM. I think that's from the Decadron they gave him before the infusion to help minimize allergic reactions and nausea. Wires him. He dropped off to a sound sleep about 5 AM, just before I had to get up and start my work day.

He hasn't vomited or even really felt like he would. A little nauseous feeling but able to work through it. He is less hungry but ate the mid-morning and afternoon snacks I prepared to help ward off the nausea that might set in on an empty stomach. He has one small area in his mouth that has developed the cold sensitivity caused by Oxaliplatin.

The infusion pump is an annoyance. A constant reminder of what's going on in his body and a tiring weight to carry non-stop. He is still adjusting it to see what feels least intrusive. We both were nervous last night about getting tangled in the IV tubing while sleeping.

Haylee greeted him this morning with "Daddy Kevin! I love your new purse. It's BEE-YUU-TEE-FUL!"

Haylee got an extra cookie today for the smile she brought to Kevin's face! Haylee's mom scored extra points when she arrived to pick up Haylee and had a sack of Kevin's favorite candy in hand. She drove all the way downtown to McCord's to get it for him.

Today was a good day. He was able to forget about cancer for a little bit and just enjoy his day.

Monday, October 8, 2007

Chemotherapy Day 1, Sticky Tape

Kevin is resting. He has a headache and some mild nausea that he thinks is more from the headache than drugs. And the headache is more from being so tired. And he can't seem to quiet himself enough to sleep.

It's like dominoes where one gets knocked over and they all fall in sequence.

The infusion pump bothers him--like being tethered to a toxic anchor.

It was a long day. The 3 1/2 hours that had become 4 1/2 were actually 5 1/2.

It was the small things today that bring me to tears tonight.

They should tell you the small things that will make your patient's chemotherapy day go better. That should be part of someone's job. Not something you learn by doing.

Tha damn sticky tape.

As soon as they inserted that wicked looking huber needle into his port I had a "duh" reality check. This entire apparatus would need to be taped in place. Well taped. 40+ hours worth of tape. Maybe we should have known to shave or Nair the area around his port, but we didn't. When the tape comes off, his hair (still growing in after his port surgery) will come off with it--he's going to have welts the size of mountains.

Someone should tell you that.

I generally consider crying as a waste of good time. A luxury I don't have the time to indulge. Until now. The stupid sticky tape makes me so frustrated I can't stop the over-flow of tears tonight.

Sunday, October 7, 2007

Guy Speak

It's been a quiet evening.

Kevin starts chemotherapy tomorrow and we're ignoring it as much as possible.

He says he's not afraid, that he just wants to get it done.

I think that's guy-speak for "I'm scared witless and I don't want to do it."

I know that's what I'm thinking and I'm nowhere near being in his shoes.

Friday, October 5, 2007

Because You Need to Laugh too

My good morning email to Kevin today--because you need to laugh too:

If one of out 4 people gets rectal cancer, 3 of your friends are really relieved right now.

Wednesday, October 3, 2007

Chemotherapy II, a Primer

Chemotherapy Counting. Thought you might like an explanation of some of the terms/numbers we use when talking about Kevin's treatment. The terminology used by the oncologist made a lot more sense to me once I researched the whole idea of treatment "cycles."

Chemotherapy is usually counted in "cycles" which include treatment and a rest period. More about the treatment/rest theory on another day.

In Kevin's treatment, a cycle consists of 2 treatments, each two weeks apart. So he has a treatment period of Monday to Wednesday (his chemotherapy drugs are delivered over 48 hours--an IV drip consisting of 2 chemotherapy drugs at the clinic which takes about 2 hours, a "push" (larger dose injected through the IV over 5 minutes) of another chemotherapy drug, then 46 hours of the same drug infused through the portable pump). Then the infusion pump is disconnected and his body gets 11 days to recover. He has another 48 hours of chemotherapy drugs, 11 days to rest and the cycle is complete.

So a cycle is, roughly, a month for Kevin. More precisely, 28 days, 4 weeks, 2 chemotherapy treatments.

The cycles are recorded like this:
Cycle 1-1 (first treatment)
Cycle 1-15 (second treatment)

Cycle 2-1 (third treatment)
Cycle 2-15 (fourth treatment)

Cycle 3-1 (fifth treatment)...

A common plan for rectal cancer treatment, after surgery, is

2 cycles of chemotherapy (4 treatments)
1 month of no treatment (recovery)
5 to 8 weeks of daily radiation with continuous chemotherapy (through the infusion pump). "Continuous" can mean 5 days a week on the pump or, literally, 7 days a week on the pump, non-stop for the entire 5 - 8 week period--the oncologist decided which way to go.
The radiation period is given a little vaguely on purpose. There is a total amount of treatment that will be given. That total may have to be given in smaller increments depending on how his body reacts.
1 month of no treatment (recovery)
2 cycles of chemotherapy (another 4 treatments)

Something in the neighborhood of an eight month time span (5 to 6 months of active treatment with 2 months of recovery sandwiched inside), not allowing any periods where treatment is delayed because of illness or reactions.

Cancer has expanded our vocabulary. I'm keeping a growing list of word and definition--a cancer glossary--which I'll post another time.

I like lists. A list is almost as good as a plan.

Monday, October 1, 2007

Officially Back to Work

Kevin returned to work in Ohio today. He wants to get a week in there before officially starting the work at home/work in Ohio plan during chemotherapy.

He's been working full days though since a week or so after his surgery. Phone and computer conferencing, emails.

Very thoughtfully, he text messaged me several times today to let me know all was well. Eased my worries considerably.

He's tired tonight and going to bed early. But he enjoyed being back in the middle of things in person and having the chance to let everyone there know he's doing well.

Sunday, September 30, 2007

Stories, Books and Life--September 07

September 2007...The bookshelves are dusty. Kevin's side of the bed has a Harry Potter book beside it. My side has a stack of Harry Potter books--uncharacteristically, Kevin has read much faster than me. The same reading material is prominent near each of our computers--a thick, stapled stack of pages printed from the National Cancer Institute website. After some disagreement among his doctors, Kevin is struggling with the issue of chemotherapy/radiation. The difference in how we approach these decisions can be seen in our reading. Same stapled stack of papers by each of our computers. Mine is worn and dog earred with a few pages falling out from frequent reference. Kevin's has water marks on it from using it as a coaster for drinks and, more telling, his rosary sitting on top of the stack. His rosary looks worn, the papers do not.

Things We Didn't Know, Part II

We've been working on our counter-attack.

The one we're mounting against the side effects of chemotherapy.

Maybe it's more of a defense system.

There are a lot of things that medicine can do now to treat the side effects of chemotherapy and make life more bearable for patients. Our thought, though, is that every medicine he puts in his body comes with some baggage. A side effect of its own.

We want to avoid extra baggage for Kevin as much as possible. He's got enough of a load already with this whole thing. So we are hoping to minimize the impact of side effects as much as we can before resorting to more medication.

Strangely there have been no guidelines at all from the oncology clinic. Not so strange, I guess, given what we've observed about communication there.

So we've been reading on our own and talking to our dietician friend. She participated in a study with chemotherapy patients so she's been an incredible resource about diet and supplements.

Kevin has begun taking (we cleared this through his oncologist) a supplement called glutamine which has shown some indication of helping against the nerve damage from one of his chemotherapy drugs. There are also some indications that it helps against developing mouth sores. It's a powder he mixes with water and chugs down 3 times a day. The nice thing about glutamine is that it comes with no baggage of its own. No side effects that it causes although it's a thick grainy mixture which Kevin finds he has to chug down all at once in order to be able to tolerate it.

This chemotherapy is known for causing mouth sores. I sent Kevin off to his dentist soon after he was diagnosed. The dentist provided toothpaste, toothbrush and mouth rinse specifically geared to help protect his mouth against these sores.

Kev is drinking a lot of water and will be especially careful to drink 3 to 4 liters a day during the week of chemotherapy. This will help to flush the drugs through his system faster; minimizing some of the cell damage side effects and possible damage to his kidneys.

We're following a neutropenic diet which will help him avoid things that might cause him to become sick as his immune system becomes weaker from chemotherapy. Essentially he eats no uncooked foods, no dried fruits, no yogurt, certain cheeses are out, eggs have to be fully cooked...things which are more likely than other foods to harbor bacteria. We'll be avoiding buffet restaurants and generally being more careful about how his food is handled.

We've stocked up on individual size containers of applesauce and juices and fruit. These can be consumed totally so nothing sits in the refrigerator; plus the Oxaliplatin also causes a cold sensitivity so cold foods will be off the list at some point. Kevin will try to eat a snack mid-morning and mid-afternoon to help minimize the nausea that might be worse on an empty stomach.

Pretty simple things really. And they make sense once you think about how chemotherapy works in the body. I'm thankful that we've had the reference tools (love the internet) and Sue the dietician to help give Kevin this advantage. I feel like we've already got an edge in keeping him healthy.

Saturday, September 29, 2007

Thanks from the Madwoman Within

I haven't really had a change of heart about my Madwoman Rant in last month's blog posts. Some valves need to be released before they blow the whole thing through the ceiling. I worry, though, that it's a little like a school conference session. The people who need to hear it, don't show and the people who do hear it think it's about them when it's not.

So I just want to say that if you've been reading this blog regularly chances are you aren't one of the faces etched vividly in my Madwoman mind as a Dead Dogger, IG&D or Death Sentence Sobber. Even if you've shared a story with us about your dead gerbil, your Aunt Cleo or the neighbor's sitter's second cousin's nephew. Some things are felt deeply in our hearts, with our minds engaged, and those things aren't what set off the Madwoman Within.

If you're reading this, you have stayed in touch with us, supported us in one or several of a dozen different ways, been here with us.

So thank you. Heartfelt and deeply. Thank you.

Sometimes it's the little things from unexpected places that really touch me. Valorie at church was one this week. Valorie is a personality. She is enthusiastic with a wicked humor which I enjoy very much. She says what she thinks even when she doesn't say it. She hugs people. I suspect she has her own Madwoman within and recognizes--embraces--mine. So it means a lot to me that Valorie knows I am not necessarily a hugger and she acknowledges that when we meet, along with letting me know we are, not hugging aside, ever in her and Dave's prayers. She doesn't hug me, but she sometimes tells me she would if she didn't know I might not like it.

I appreciate that sentiment at least as much as Kevin appreciates that she does hug him.


The Madwoman within me especially thanks the God for the Valories I encounter along the way.

Thursday, September 27, 2007

Have a Safety Pin in Your Pocket

I talked to the oncologist in Ohio today.

I had a lot of questions about what Kevin's treatment would look like over there, how they do things, what she thinks of his prognosis, how she would handle hisneeds, his concerns, her experience and training... just a lot of questions.

Kevin and I sent an email to the oncology coordinator there at the Ohio clinic who passed our email along to the doctor. She called today as she was driving in to the clinic.

I am impressed that she took the time to call herself. Kevin wasn't home just then so we arranged things so that he could call back on her cell phone later in the day. In the meantime she answered a lot of my questions.

It was clear she had reviewed his case before we talked. And when I told her some of the specific questions Kevin had, she further prepared those answers before he called her back.

I'm impressed. This is the sort of care I want for him. Answers to our questions, explanations in real terms--neither blowing us off with dumbed down answers nor talking so scientifically we can't begin to comprehend.

She listened and she responded to him and his needs.

We were both impressed with the answers she provided us. They weren't always the answers we wanted to hear, but they were well based answers that made sense with what we already knew.

Two things stick with me.

One, she confirmed what we believed--Kevin's cancer is a Stage II cancer. A Stage IIa to be more precise. Not a Stage III as the nurse practitioner told us.

The prognosis for a Stage IIa rectal cancer patient is much better than for a Stage III patient.

Two, she is willing to take on his treatment care later in the game if need be. She understands why we are in Lafayette right now and she's willing to begin treating him in Ohio at any time if our situation changes.


There are options. Options are good. Another aspect of my Assbackward Optimism. Always have a fallback plan.

Dr. Skinner and Boyd Cancer Center are the safety pin in my cancer plan pocket.

Wednesday, September 26, 2007

Always Read the Fine Print

"Where to do this--Indiana or Ohio--is a complicated decision for us. Kevin works in another state so we have to weigh that in our planning. We need to know an average treatment day. what treatment is going to look like--how long could he be here for a treatment, what other appointments will there be--excluding possible complications--how often will he need to come to the clinic..."

I don't know how to be more explicit. Twice we asked our questions, each of us with a pencil poised over a notebook where we recorded the answers. We asked for the straightforward answers, no sugar coat, no trickle effect. Just lay it out so we can sort it into a rough plan. (I like a plan; we've established that fact.)

Kevin and I walked out of 2 appointments with the impression that he would have a 3 1/2 hour treatment, go back in 2 days to have the pump removed and see the inside of the clinic again in 12 days for the cycle to repeat. Given the way we asked about scheduling, we guessed he would see the doctor for ongoing evaluation on treatment days.

Today the mailman delivered a schedule from the clinic. The 3 1/2 hour treatments have morphed to 5 hours. Every other treatment week he will go back on Thursday for an injection. Each week off treatment brings a check-up with the doctor or nurse practitioner. He went from the expected 8 appointments for these first 2 cycles to 14.

Kevin is tired of it already, he's dreading it all and this is just one more kick. He thought he had planned as much as possible to accomodate work and health realities and now the clinic has upped its side of the demand.

So now we are rearranging plans for help in the daycare so I can go to appointments with him and travel plans to and from his work in Ohio.

There are definite communication problems between us and the oncology office. I don't know if it's as simple as not using the same terms or if we truly are not being heard. What I've learned from this is to be more explicit. And then say it back. Twice. Use diagrams if necessary.

And read the fine print. I don't know where this information was in the fine print but we had to have missed it somewhere.

I knew being on the customer side of a medical transaction was not going to equate to being "always right"--there are so many things here that are new to our life. Things we don't know enough about, don't like, didn't choose and have to come to terms with as simply being what they are. I can accept that readily. What I didn't expect--and can't accept--is this premise that having cancer should make Kevin blind, deaf and dumb on matters of his own care.

Tuesday, September 25, 2007

Be Careful What You Wish For...

I felt good about Kevin's surgeon before we ever met him. Aside from several people giving him rave reviews, I had researched his educational background, his specialty training and his work experience.

I thought doing the same for the oncologist might make me feel more confident. I was hoping to find information about research work she's participated in or maybe a paper she had published.

Be careful what you wish for; you might get it.

I did find something online that the oncologist had written.

A testimonial. For a Bioelectric Shield. This is a pendant with a crystal in it that balances out your something or other and your whatchamacallit.

"I no longer have to take medication for headaches, because they are now infrequent. I am more alert when attending large meetings. On a recent business trip I had no fatigue and was able to go to a four-hour meeting." -------, MD

The sales site for the bioelectric shield offers several versions for sale. The price goes up as you add more expensive metals to your shield. And the promise of benefits increases as well. 15 to 20% more protection with the upgrade model over the classic, basic, model.

The site also suggests who should have a bioelectric shield. Everyone. Babies, pets...a little gem about some cancer patients having peaceful deaths thanks to the calming effects of the bioelectric shield.

I am not feeling more confident.

Realistically I know that doctors, like all of us, are free to believe in and utilize whatever alternative medicines they wish for themselves. And it's not like she's handing us pamphlets on the thing.

But she endorsed it as a doctor. Not just a person who found success with the thing. As a doctor. MD.

I guess I should have been more specific in my hope of finding something the oncologist had published.

I want a doctor with experience that benefits Kevin. Call me selfish.

At least we can be confident that a headache won't keep the doctor from being able to pay attention to his 3 1/2 hour treatments. She's good for 4 hours with the Bioelectric Shield.