Friday, February 29, 2008
Stories, Books and Life--February 2008
February 2008--There's no book on Kevin's side of the bed this month. Only beginning to recover from January's hospitalization, he is still very tired and falls asleep in the evenings almost as soon as he sits down in the evenings after work. When he does stay awake, he's catching up on work related reading--emails, quotes, pages for the newsletter. I've been reading a pile of research on second surgeries and the benefit/risk of additional radiation and chemotherapy.
Today is....Friday!
Funny how the arrival of Friday used to be a big deal. The end of the workweek. The beginning of the WorkWeekend. Something special planned for the next two days. Effort weighed, measured and rewarded with a paycheck. Errands to run. Chores to do. Yard work. Staying up late. Sleeping in late.
Today I had to resort to ticking off the days on my fingers to tell me it is Friday. Chemotherapy is on a Tuesday, Wednesday is a sleep deprivation blur, pump comes off Thursday...today must surely be Friday.
Kevin's headache is a little less intense today. We've learned a few tricks for staying on top of it--plenty of water, Tylenol BEFORE it's needed, rest and some exercise to clear the cobwebs. When he's able to, he likes to walk the woods out back, fill the feeders, check on the deer trails, see what they've eaten down to oblivion (including a Rubbermaid seed container on the patio). But this cold induced nerve pain from the drugs makes it hard on him to be outside for long. It's been a snowy sleet filled week. I decided the birds could manage with whatever was in the feeder for a few days-my knees don't like the hill in cold wet weather. So I was surprised when I looked up and saw Kevin trudging down the hill with the food. He said he saw my camera sitting by my desk and he guessed I was hoping to get some shots of the birds and deer feeding. So he filled the feeders.
I thought about scolding him for going out in the rotten weather, the wet sleet, the cold temperature. But, for a blessed change, my mind sped in front of my mouth and I saw how much he needs to know there are things he does to make my life easier, to make my day more pleasant; especially now when he is finding it so hard to have me doing things that have, traditionally, been his domain.
A couple of our daughters boyfriends have lamented that they can't stack up to this iconic legend of a dad and husband that Kevin has been. The ways he takes care of us.
The boyfriends are right. Those footprints of Kevin's--out there in the snow today, but all through our lives every day--those are pretty big footprints to follow in.
Today I had to resort to ticking off the days on my fingers to tell me it is Friday. Chemotherapy is on a Tuesday, Wednesday is a sleep deprivation blur, pump comes off Thursday...today must surely be Friday.
Kevin's headache is a little less intense today. We've learned a few tricks for staying on top of it--plenty of water, Tylenol BEFORE it's needed, rest and some exercise to clear the cobwebs. When he's able to, he likes to walk the woods out back, fill the feeders, check on the deer trails, see what they've eaten down to oblivion (including a Rubbermaid seed container on the patio). But this cold induced nerve pain from the drugs makes it hard on him to be outside for long. It's been a snowy sleet filled week. I decided the birds could manage with whatever was in the feeder for a few days-my knees don't like the hill in cold wet weather. So I was surprised when I looked up and saw Kevin trudging down the hill with the food. He said he saw my camera sitting by my desk and he guessed I was hoping to get some shots of the birds and deer feeding. So he filled the feeders.
I thought about scolding him for going out in the rotten weather, the wet sleet, the cold temperature. But, for a blessed change, my mind sped in front of my mouth and I saw how much he needs to know there are things he does to make my life easier, to make my day more pleasant; especially now when he is finding it so hard to have me doing things that have, traditionally, been his domain.
A couple of our daughters boyfriends have lamented that they can't stack up to this iconic legend of a dad and husband that Kevin has been. The ways he takes care of us.
The boyfriends are right. Those footprints of Kevin's--out there in the snow today, but all through our lives every day--those are pretty big footprints to follow in.
Thursday, February 28, 2008
Chemotherapy, Day Three...
...that blissful day each treatment period when Kevin gets the infusion pump taken off; also known as "de-accessing him." He's typically climbing the wall by this point, wanting the thing gone from his life.
Kevin went into work for a little while this morning and got home shortly after the home care nurse, Pam, arrived. Thirty minutes and one mountain of paperwork later and we could call this treatment done.
One of those "ah-ha" moments happened today when I realized I can rattle off medical dates for him--diagnosis, surgery, port surgery, treatments, hospitalizations, CT scans--with the response and surety previously reserved to our children's birthdays and our anniversary.
Side effects this round are about what we expected. He has that awful headache which, if untreated, causes nausea and a general worn out feeling. The Oxaliplatin nerve thing is in full swing too; not an easy side effect to cope with when the outdoor temperature is 9 degrees. He's back to drinking tap water and unchilled bottled juice because anything cold is painful in his mouth. And he's really tired today--also consistent with how things went during previous cycles of treatment. Sleep can be an elusive thing when he's trying to find that comfort zone in the midst of being connected to 6 feet of IV tubing and the infusion pump.
Nurse Pam headed on to her next patient and Kevin dropped like a rock on the Man-Couch. A little undisturbed rest is just what he needs so I've muffled his ever-present cell phone with a pillow-whatever is urgently buzzing from the other end can wait a bit-turned off the sounds on my computer and shut off the dishwasher.
Letting the housework wait for a better time, getting things as peaceful as possible, recognizing the priorities...reminds me of a crewel embroidery piece I did as a young mother...
Cleaning and scrubbing can wait 'til tomorrow
For babies grow up, we've learned to our sorrow.
So quiet down cobwebs, dust go to sleep.
I'm rocking my baby and babies don't keep.
So I'll be quiet now. My baby is sleeping.
Wednesday, February 27, 2008
Be A Kick-In-The-Pants
Kevin went to work today with the promise of coming home at lunch and having a brief nap. That seemed to work well. He ate a little then rested about 45 minutes before returning to the office.
This is the first run with the infusion pump at work. He tucked the excess IV tubing carefully away so as to avoid any unpleasant snaggings on office furniture or equipment. The pump itself has a beltloop area which lets it rest snugly against his hip. A little easier on him than lugging the thing across his shoulder.
A couple of people asked about it and were amazed he was at work in the midst of a chemotherapy treatment.
I think there's some good witness to be had here.
There's the encouragement it might give to people as they face this in their own future--either having cancer themselves or in a friend or family member. The realization that one can endure and have a lot of normalcy in the midst of this nightmare might give someone else strength when they need it.
And I won't discount the possibility of a beneficial kick-in-the-pants for the folks who think the world should come to a grinding halt if they have a case of the sniffles or a bad hair day.
This is the first run with the infusion pump at work. He tucked the excess IV tubing carefully away so as to avoid any unpleasant snaggings on office furniture or equipment. The pump itself has a beltloop area which lets it rest snugly against his hip. A little easier on him than lugging the thing across his shoulder.
A couple of people asked about it and were amazed he was at work in the midst of a chemotherapy treatment.
I think there's some good witness to be had here.
There's the encouragement it might give to people as they face this in their own future--either having cancer themselves or in a friend or family member. The realization that one can endure and have a lot of normalcy in the midst of this nightmare might give someone else strength when they need it.
And I won't discount the possibility of a beneficial kick-in-the-pants for the folks who think the world should come to a grinding halt if they have a case of the sniffles or a bad hair day.
Tuesday, February 26, 2008
...And Then There Were Seven
Another chemotherapy treatment knocked off the list and seven remaining. This is the first infusion he's done here. Pretty much the same routine as before. They've dropped the Benadryl and antacid from the line up and made the Aloxi into an infusion rather than an injection and added Ativan to help with nausea and "anxiety." We're not sure where that came from--I don't know that Kev's reluctant resignation to treatment really qualifies as pre-treatment anxiety.
The Oxaliplatin has already kicked in with that quirky cold induced nerve reaction. He says it's not really bad yet but he's disappointed that it's here already. It doesn't sound like such a traumatic side effect when you think about some of the others, but it's one that really wears on him with time. It just intrudes every day in so many parts of his day.
The clinic here feels less oppressive than the one in Indiana. Larger, lighter, better nursing staff to patient ratio. Kevin was pleased to have a wireless internet connection for his computer and less overall chaos and congestion in his day. Sometimes it's the little things that really count. The place doesn't stink of chemotherapy. The smell at the other place had come to be such a bad trigger for Kevin that just walking in was enough to make him feel awful.
Another difference is that we store his infusion pump and all of the assorted related supplies between treatments. What are the chances of us remembering to take it with us to the clinic for his next treatment?
He'll wear the portable pump--it came loaded with 5-FU which is like toxic Kool-Aid to cancer cells--until Thursday when a home nurse will meet him at our home (this is a big plus--within the driving radius of the home care program, he can designate a meeting place that best suits his schedule...his office, at home or even at the cancer center) to remove the pump and flush his port with heparin. We walked out of the cancer center with 2 big plastic bags full of the stuff needed for this home care aspect of his portable pump and implanted access port....Kevin, being the naive soul that he is, likens them to the goody bags which he carries home from conferences.
Right.
A quick inventory of the bags includes sterile wrapped huber needles (These are noxious looking beasts if you happen to be needle phobic. Thankfully Kevin is not. When someone you love has cancer, you find yourself appreciating even the smallest of upbeat things in their treatment. That Kevin isn't done in by needles has occasionally been the brightest part of a treatment day.), safety gloves, gown and mask, dressing kits, scissors, tape, sealed empty syringes and loaded syringes of saline and heparin. And a big waste disposal container to collect the toxic medical waste produced via infused chemotherapy.
What really hit me, though, is the "Chemotherapy Drug Spill Kit."
2. Put on ChemoPlus Gown, shoe coverings, respirator mask, safety glasses and both pairs of gloves (large gloves first). Important: Read enclosed instruciton for the respirator mask to ensure proper fit.
3. Lay ChemoSorb Pads over the spill. The pads will absorb the liquid and transform it into a gel to assist in disposal. Caution: ChemoSorb gel is extremely slippery when wet. Avoid skin and eye contact and do not inhale. (I like this part. Do not inhale. They left off the warning to not land in the stuff when you pass out from not breathing.)
My mind keeps playing out what the scenario would really look like in our house.
I would be reading the instructions for a second and third time and preparing for a step by step attack while the spill was soaking into the carpet. If the spill was on the new sofa (fondly referred to as the "Man Couch") I would alternate reading with an occasional curse. Cut me some slack here, for gosh sakes; the check I wrote to pay for it hasn't even made it to the bank yet.
Kevin, being a man, would damn the instructions, rip open the entire contents of the kit and use it all to sop up the mess. One big handful of gown, shoe coverings, mask, safety glasses, gloves and ChemoSorb pads. Any gelified liquid remaining would be triumphantly sucked up with the ShopVac, a tool Kevin considers worthy of use on any mess--organic, animate or toxic. As an afterthought, he would flap the warning sign (see instruction #1 above) frantically to fan the spot dry. Once he had stomped everything down into one of the Waste Disposal Bags, he would notice my bug-eyed stare and respond with a shrill "WHAT?!"
It's good to laugh at the imagery. Otherwise I'll get fixated on those stern instructions warning about the hazards of a chemotherapy drug spill. We're not talking "Don't let the dog lap this gunk up" or "Be careful not to splash it in your eyes." We're talking don't come in external contact with this crap in any way, shape or form.
And here we are tonight, watching it drip into Kevin with each little whirrr of the pump, one minutely fractionated dose at a time.
The Oxaliplatin has already kicked in with that quirky cold induced nerve reaction. He says it's not really bad yet but he's disappointed that it's here already. It doesn't sound like such a traumatic side effect when you think about some of the others, but it's one that really wears on him with time. It just intrudes every day in so many parts of his day.
The clinic here feels less oppressive than the one in Indiana. Larger, lighter, better nursing staff to patient ratio. Kevin was pleased to have a wireless internet connection for his computer and less overall chaos and congestion in his day. Sometimes it's the little things that really count. The place doesn't stink of chemotherapy. The smell at the other place had come to be such a bad trigger for Kevin that just walking in was enough to make him feel awful.
Another difference is that we store his infusion pump and all of the assorted related supplies between treatments. What are the chances of us remembering to take it with us to the clinic for his next treatment?
He'll wear the portable pump--it came loaded with 5-FU which is like toxic Kool-Aid to cancer cells--until Thursday when a home nurse will meet him at our home (this is a big plus--within the driving radius of the home care program, he can designate a meeting place that best suits his schedule...his office, at home or even at the cancer center) to remove the pump and flush his port with heparin. We walked out of the cancer center with 2 big plastic bags full of the stuff needed for this home care aspect of his portable pump and implanted access port....Kevin, being the naive soul that he is, likens them to the goody bags which he carries home from conferences.
Right.
A quick inventory of the bags includes sterile wrapped huber needles (These are noxious looking beasts if you happen to be needle phobic. Thankfully Kevin is not. When someone you love has cancer, you find yourself appreciating even the smallest of upbeat things in their treatment. That Kevin isn't done in by needles has occasionally been the brightest part of a treatment day.), safety gloves, gown and mask, dressing kits, scissors, tape, sealed empty syringes and loaded syringes of saline and heparin. And a big waste disposal container to collect the toxic medical waste produced via infused chemotherapy.
What really hit me, though, is the "Chemotherapy Drug Spill Kit."
"KEEP EVERYONE AWAY FROM SPILL SITE"
1. Take out all contents of this kit. Display sign near spill area.2. Put on ChemoPlus Gown, shoe coverings, respirator mask, safety glasses and both pairs of gloves (large gloves first). Important: Read enclosed instruciton for the respirator mask to ensure proper fit.
3. Lay ChemoSorb Pads over the spill. The pads will absorb the liquid and transform it into a gel to assist in disposal. Caution: ChemoSorb gel is extremely slippery when wet. Avoid skin and eye contact and do not inhale. (I like this part. Do not inhale. They left off the warning to not land in the stuff when you pass out from not breathing.)
***I'll skip the numerical details but from here you are to bag anything remotely connected with the clean up, then bag the entire mess into a second bag.***
My mind keeps playing out what the scenario would really look like in our house.
I would be reading the instructions for a second and third time and preparing for a step by step attack while the spill was soaking into the carpet. If the spill was on the new sofa (fondly referred to as the "Man Couch") I would alternate reading with an occasional curse. Cut me some slack here, for gosh sakes; the check I wrote to pay for it hasn't even made it to the bank yet.
Kevin, being a man, would damn the instructions, rip open the entire contents of the kit and use it all to sop up the mess. One big handful of gown, shoe coverings, mask, safety glasses, gloves and ChemoSorb pads. Any gelified liquid remaining would be triumphantly sucked up with the ShopVac, a tool Kevin considers worthy of use on any mess--organic, animate or toxic. As an afterthought, he would flap the warning sign (see instruction #1 above) frantically to fan the spot dry. Once he had stomped everything down into one of the Waste Disposal Bags, he would notice my bug-eyed stare and respond with a shrill "WHAT?!"
It's good to laugh at the imagery. Otherwise I'll get fixated on those stern instructions warning about the hazards of a chemotherapy drug spill. We're not talking "Don't let the dog lap this gunk up" or "Be careful not to splash it in your eyes." We're talking don't come in external contact with this crap in any way, shape or form.
And here we are tonight, watching it drip into Kevin with each little whirrr of the pump, one minutely fractionated dose at a time.
Monday, February 25, 2008
The Better List
It was quiet around here tonight. Heavy quiet.
Kevin's return to chemotherapy tomorrow is weighing on both of us.
He's dreading what he already knows and hates about it. And worried about the additional burdens it may place on his already over-taxed body. Not wanting to learn the intricacies of treatment in a new place.
I'm telling myself it will be better here. They listen and react to him better. The place is lighter and roomier so he won't feel that claustrophobic closing in of walls. I won't feel the over powering presence of too many people in too small a place so I'll be more positive for Kevin.
I won't have to divide myself in multiple directions between the daycare's needs and Kevin's needs and I think that will help. He'll feel more confident if I am there to watch over things and I'll be less stressed without feeling like I'm asking too much of everyone else to make this happen for us.
I made a list of why it will be better this time. If I read it enough, I'll convince myself.
Kevin's return to chemotherapy tomorrow is weighing on both of us.
He's dreading what he already knows and hates about it. And worried about the additional burdens it may place on his already over-taxed body. Not wanting to learn the intricacies of treatment in a new place.
I'm telling myself it will be better here. They listen and react to him better. The place is lighter and roomier so he won't feel that claustrophobic closing in of walls. I won't feel the over powering presence of too many people in too small a place so I'll be more positive for Kevin.
I won't have to divide myself in multiple directions between the daycare's needs and Kevin's needs and I think that will help. He'll feel more confident if I am there to watch over things and I'll be less stressed without feeling like I'm asking too much of everyone else to make this happen for us.
I made a list of why it will be better this time. If I read it enough, I'll convince myself.
Sunday, February 24, 2008
Traveling Prayers
I think everyone who is thinking of becoming a parent should have to spend an afternoon at Chuck E. Cheese. And every teen and twenty-something who is NOT thinking of becoming a parent but IS having sex should be assigned a couple of kids they have to chase after, feed, clean up after, negotiate with, and pay for while spending the afternoon at Chuck E. Cheese.
Joshua celebrated his 6th birthday yesterday. His mom was feeling daring and booked party space with the musical mouse and all of his games. Josh, Landon and Luke had a blast and it wasn't too hard on the grown-ups (other than his mother's wallet which took a $100+ beating). But the noise and sheer body volume of tots aged 10 and under were overwhelming. Kevin and I had a good time being the grandparents at this one--getting to watch Joshua sing with the giant mouse, blow out the candles on his cake and run through those tokens in the arcarde! We miss a lot of the day to day moments so it's extra nice to get to be part of these big ones.
We spent Saturday night in Lafayette, taking the opportunity to go to Mass both Saturday night and Sunday morning. Saturday night is grown-up time; a chance to meet up with friends we miss so much now that we're in Ohio. Sunday morning is kid time and very gratifying. Hannah came flying into the pew and nearly knocked me over with her hug. We had a chance to visit with the other kids a little bit after their religious ed classes. Saw Hannah, Andj, Evan, Xavier, Liam, baby Beatrice, Sebastian, Will and Dominic. Sally and Travis weren't there this weekend.
Before we left town, we spent some time visiting Miss Haylee and her parents. The kid is a genius. Kevin left saying he hopes she never loses that joy she has for life. I've always told people that Haylee lives life LARGE. She is just amazing.
With chemotherapy beginning again this week, it was good to be among family and friends. Kevin had the emotional boost of many reminders from people who continue to pray for him and who know this has been a really difficult decision period.
I think our travel may be limited in the coming weeks as his energy diminshes through the treatments. It was nice to be reminded that those prayers can travel the distance between all of us and draw us together even through the miles.
Thursday, February 21, 2008
An Excursion! An Adventure! Shopping!
When Kevin mentioned "drive thru" and "shopping" near lunch time yesterday and invited me to go, I made some assumptions. I should have remembered that--with the onset of cancer--Kevin has adopted a risk taking attitude which includes doing things like using certain words in a context far removed from what he knows I expect. In my world "drive thru" includes at least a Happy Meal and a Clown. And "shopping," in the absolute most basic sense, means a grocery store, if not a full fledged Mall (a thing I have not laid eyes upon for a month, much less entered.) Not so here. We 
hit the "Drive Thru Barn" for shelled corn and bird food. For those doubters among you readers, take a look at the shelves of assorted critter food available. Llama chow, Dog chow, Horse chow, Goat chow...the only thing missing was People Chow. Just to make it count as a shopping trip, we also stopped at the post office to pick up our mail and buy some stamps."Shopping" in TinyTowne. Another revelation in my "new normal."
Monday, February 18, 2008
Don't Tease Cancer
Dr. Skinner wanted Kevin to return to chemotherapy today. There's some medical thought that any lurking cancer cells might heal and multiply during the time he's not in treatment.
I imagine these rogue cells getting really sick from the treatments he's done yet not quite succumbing to the death we had planned for them.
And now they're not only recovering and growing again, they're mad.
Kev has backed the restart up another week. I think he was still looking for a good reason not to do it at all when he started studying his calendar. A big customer trip or a training session. Some type of 'the world will end without my involvement' thing in the works.
He didn't find anything on that scale but he did realize he needs to go to a board meeting in Chicago the first week of March, which would fall as chemotherapy week if he begins today.
So he's given himself another week to adjust to the idea. And that's ok. He needs what he needs.
On the other hand, you don't tease a dog that bites--even if you think it's chained. And cancer bites.
I imagine these rogue cells getting really sick from the treatments he's done yet not quite succumbing to the death we had planned for them.
And now they're not only recovering and growing again, they're mad.
Kev has backed the restart up another week. I think he was still looking for a good reason not to do it at all when he started studying his calendar. A big customer trip or a training session. Some type of 'the world will end without my involvement' thing in the works.
He didn't find anything on that scale but he did realize he needs to go to a board meeting in Chicago the first week of March, which would fall as chemotherapy week if he begins today.
So he's given himself another week to adjust to the idea. And that's ok. He needs what he needs.
On the other hand, you don't tease a dog that bites--even if you think it's chained. And cancer bites.
Sunday, February 17, 2008
The Surprise of Change
We drove over to Indiana to see Josh play basketball. Kevin was afraid if we waited, he wouldn't feel well enough to make the trip.Our girls didn't play basketball which makes it easier to sit through a game with Kevin now. He's not constantly having to bite back a bit of advice or sit on his hands to avoid directing the kids to their various positions. Baseball and soccer can get lengthy when Kevin is battling his inner coach.
What Josh likes to do is run the length of the court and make a jump shot just before he careens into the padded goal stand. It doesn't really matter if he has the ball or not.
Keivn pointed out that last year it was harder for Josh to make that shot. He jumps higher this year; he's taller. A lot taller. I guess we knew that but I hadn't really seen it before today.
Changes, even those we expect, continue to surprise me.
Saturday, February 16, 2008
Decisions Made
Kevin is still very tired from being so ill. Our evenings have been dinner at home then curling up in front of the fire for some reading. Sleeping.
He worries that the days and nights are too quiet for me. The truth is that I am exhausted too.
Kevin has decided to begin chemotherapy treatments again. He's been really torn about doing "the right" thing and it's been a hard decision for him to make.
I think, for him, it's the right thing to do. A return of the cancer will be devastating and more so if he feels regret about not continuing treatment this time.
That said, he is only agreeing to return to chemotherapy. No more radiation, he says. Ever. The fear of causing additional damage that will require more surgery is greater than the fear of not doing the treatment.
And only as much chemotherapy as he feels up to enduring. I know he has a certain number that he wants to meet; a chemotherapy goal, if you will. He wants to get through the initial 8 treatments. He's already compeleted 4 in Indiana.
His doctor has added an additional 4 treatments at this point. Those are the negotiable ones in Kevin's mind.
I'm hoping Kevin will find some peace in having made this decision.
He worries that the days and nights are too quiet for me. The truth is that I am exhausted too.
Kevin has decided to begin chemotherapy treatments again. He's been really torn about doing "the right" thing and it's been a hard decision for him to make.
I think, for him, it's the right thing to do. A return of the cancer will be devastating and more so if he feels regret about not continuing treatment this time.
That said, he is only agreeing to return to chemotherapy. No more radiation, he says. Ever. The fear of causing additional damage that will require more surgery is greater than the fear of not doing the treatment.
And only as much chemotherapy as he feels up to enduring. I know he has a certain number that he wants to meet; a chemotherapy goal, if you will. He wants to get through the initial 8 treatments. He's already compeleted 4 in Indiana.
His doctor has added an additional 4 treatments at this point. Those are the negotiable ones in Kevin's mind.
I'm hoping Kevin will find some peace in having made this decision.
Friday, February 15, 2008
A Relative Best
"As a pupil, a student, a teacher, and a priest, I have learned that "one's best" on Monday is sometimes "better" and sometimes "not as good" as one's best on Tuesday or Thursday. The best I can do today is the best I can do today, even if it's not as good as the best I did yesterday."--Father John L. Sullivan
An online conversation with a friend this week brought the little tidbit above. I initially asked if I could borrow it for those days when Kevin becomes discouraged because he thinks he should be handling treatment or side effects 'better.'
Instead, though, I am putting it here where I can find it again when I need it. For Kevin. For myself.
For those days ahead when either of us needs the reminder that our best is the best we can do on that particular day, in that particular moment.
An online conversation with a friend this week brought the little tidbit above. I initially asked if I could borrow it for those days when Kevin becomes discouraged because he thinks he should be handling treatment or side effects 'better.'
Instead, though, I am putting it here where I can find it again when I need it. For Kevin. For myself.
For those days ahead when either of us needs the reminder that our best is the best we can do on that particular day, in that particular moment.
Thursday, February 14, 2008
A Leap of Faith
Thomas, called Didymus, one of the Twelve,was not with them when Jesus came.So the other disciples said to him, “We have seen the Lord.”But Thomas said to them,“Unless I see the mark of the nails in his handsand put my finger into the nailmarksand put my hand into his side, I will not believe.”Now a week later his disciples were again insideand Thomas was with them.Jesus came, although the doors were locked,and stood in their midst and said, “Peace be with you.”Then he said to Thomas, “Put your finger here and see my hands,and bring your hand and put it into my side,and do not be unbelieving, but believe.”Thomas answered and said to him, “My Lord and my God!”Jesus said to him, “Have you come to believe because you have seen me?Blessed are those who have not seen and have believed.” John 20:24-29
I've watched and listened many hours now as Kevin has struggled with the chemotherapy question. First last fall when surgeon and oncologist disagreed and now, again, as another surgeon and another oncologist don't precisely agree.
Kevin finds a lot of the struggle rooted in his concept of recognizing and doing God's will. What does God want him to do with his life and how? We have a differing viewpoint about how much God manages these things so I've not been a lot of help in this area.
In fact, it makes me a little nuts when Kevin is all about "what does God want me to do" and I am populating a spreadsheet with numbers so I can run a comparison. I see it as a morally neutral decision with no right or wrong answer in God's plan beyond Kevin choosing what is right for him.
I think God gave us science for a reason.
And then I stumbled onto John's account of Thomas, the doubter.
Like Thomas, I have a fat dose of skepticism about things I can't see or touch or prove through research. I like numbers and facts and science to back me up.
Maybe I like them so much that I let them keep me from taking a leap of faith. From handing it all confidently to God.
I need to remember the rest of John's account of Thomas. The deep faith Thomas professed which shows his willingness to change and his acceptance of Truth when it was presented to him.
So what's in here for Kevin and I right now? Faith. More precisely, leaping in faith.
Even though we may be taking this leap from slightly different vantage points, it is, still, a leap of faith for both of us. Faith in a God who loves us and who wants whatever is best for us--particularly in this moment, for Kevin. Faith in a God who will not leave us alone on whatever path is chosen.
I've watched and listened many hours now as Kevin has struggled with the chemotherapy question. First last fall when surgeon and oncologist disagreed and now, again, as another surgeon and another oncologist don't precisely agree.
Kevin finds a lot of the struggle rooted in his concept of recognizing and doing God's will. What does God want him to do with his life and how? We have a differing viewpoint about how much God manages these things so I've not been a lot of help in this area.
In fact, it makes me a little nuts when Kevin is all about "what does God want me to do" and I am populating a spreadsheet with numbers so I can run a comparison. I see it as a morally neutral decision with no right or wrong answer in God's plan beyond Kevin choosing what is right for him.
I think God gave us science for a reason.
And then I stumbled onto John's account of Thomas, the doubter.
Like Thomas, I have a fat dose of skepticism about things I can't see or touch or prove through research. I like numbers and facts and science to back me up.
Maybe I like them so much that I let them keep me from taking a leap of faith. From handing it all confidently to God.
I need to remember the rest of John's account of Thomas. The deep faith Thomas professed which shows his willingness to change and his acceptance of Truth when it was presented to him.
So what's in here for Kevin and I right now? Faith. More precisely, leaping in faith.
Even though we may be taking this leap from slightly different vantage points, it is, still, a leap of faith for both of us. Faith in a God who loves us and who wants whatever is best for us--particularly in this moment, for Kevin. Faith in a God who will not leave us alone on whatever path is chosen.
Tuesday, February 12, 2008
The Infamous But(t)
Kevin's hiney has made it into the big time. Ok, only the local big time, but everyone has to start somewhere.
Given the disparity of medical opinion about his cancer and treatment, his oncologists are presenting his case to a review board. So a number of "experts" in their various fields--internists, oncologists, surgeons, gastroenterologists--will weigh in with an opinion on the state of Kevin's butt.
I expect a best selling book out of this and possibly a movie deal.
Mel Gibson can play his butt double. The man may be crazy as a loon but he still has a nice ass.
In the meantime, the efforts to halt cancer continue. The oncologist convinced Kevin to let her put him back on the chemotherapy schedule. Things are in place for him to continue and he can call the day before and cancel if he still feels strongly against more treatment.
He's really torn about what to do.
Statistically chemotherapy improves his survival, but what about the potential for additional damage which could lead to surgery?
Given the disparity of medical opinion about his cancer and treatment, his oncologists are presenting his case to a review board. So a number of "experts" in their various fields--internists, oncologists, surgeons, gastroenterologists--will weigh in with an opinion on the state of Kevin's butt.
I expect a best selling book out of this and possibly a movie deal.
Mel Gibson can play his butt double. The man may be crazy as a loon but he still has a nice ass.
In the meantime, the efforts to halt cancer continue. The oncologist convinced Kevin to let her put him back on the chemotherapy schedule. Things are in place for him to continue and he can call the day before and cancel if he still feels strongly against more treatment.
He's really torn about what to do.
Statistically chemotherapy improves his survival, but what about the potential for additional damage which could lead to surgery?
Monday, February 11, 2008
God's Will in the Details of Life
God's will.
The topic continues in our household. It's probably a topic in any Christian household dealing with a potentially fatal illness and the accompanying misery of treatment.
Kevin battles with this--how does his own mortality connect with God's will?
Kevin, in his black and white battle, would like answers. Why does he have cancer? God's will? What should he do about his cancer treatment? God's will?
He battled this same decision last fall before beginning chemotherapy. Is God giving him another chance to see His will in this matter? A faith-filled kick in the ass disguised as a constricted bowel and a chance to reconsider the rightness of treatment?
I don't know why he has cancer. A lot of people tell me it's "God's Plan." I think we all know how I feel about that line of thinking.
Kev's cancer is more likely the result of him not forwarding one of those email chain letter to his 15 best friends AND the person who sent it to him in the first place.
Forget the cumulative effects of 50+ years of a crappy diet and hostile digestive tract. Think about the accumulated curses and missed blessings of 12 or so years of unforwarded email chain letters.
Mostly, though, I don't particularly care about the why of Kevin's cancer, beyond the thought of eliminating whatever in our diet, environment might have extended the invitation to cancer to take up residence deep inside Kevin's body.
He has it. It just is. And I want him to not have it.
Try as I do to understand, I can't embrace the attitude of The God's Willers when it comes to Kevin's cancer. I don't believe He willed Kevin's cancer into being. I don't believe He has a will--a right or wrong response--about whether Kevin continues treatment or not. On any morally neutral question.
I believe God is in the details, large and small, of our lives. I don't believe he is the details. I don't believe he arranges them, micromanages them.
That He could is another discussion entirely. Knowing is not the same as willing in my simple understanding.
And, just to be certain we've covered all the bases in this game, expect your inboxes to be flooded with 12 years worth of email chain letters. Forward each one to your 15 best friends, strong women, tireless public servants, under-appreciated parents or amazing pets. AND the person who sent it to you.
Don't break the chain. FOLFOX, Fractionated Radiation and the loss of large amounts of your colon may occur if you do.
The topic continues in our household. It's probably a topic in any Christian household dealing with a potentially fatal illness and the accompanying misery of treatment.
Kevin battles with this--how does his own mortality connect with God's will?
Kevin, in his black and white battle, would like answers. Why does he have cancer? God's will? What should he do about his cancer treatment? God's will?
He battled this same decision last fall before beginning chemotherapy. Is God giving him another chance to see His will in this matter? A faith-filled kick in the ass disguised as a constricted bowel and a chance to reconsider the rightness of treatment?
I don't know why he has cancer. A lot of people tell me it's "God's Plan." I think we all know how I feel about that line of thinking.
Kev's cancer is more likely the result of him not forwarding one of those email chain letter to his 15 best friends AND the person who sent it to him in the first place.
Forget the cumulative effects of 50+ years of a crappy diet and hostile digestive tract. Think about the accumulated curses and missed blessings of 12 or so years of unforwarded email chain letters.
Mostly, though, I don't particularly care about the why of Kevin's cancer, beyond the thought of eliminating whatever in our diet, environment might have extended the invitation to cancer to take up residence deep inside Kevin's body.
He has it. It just is. And I want him to not have it.
Try as I do to understand, I can't embrace the attitude of The God's Willers when it comes to Kevin's cancer. I don't believe He willed Kevin's cancer into being. I don't believe He has a will--a right or wrong response--about whether Kevin continues treatment or not. On any morally neutral question.
I believe God is in the details, large and small, of our lives. I don't believe he is the details. I don't believe he arranges them, micromanages them.
That He could is another discussion entirely. Knowing is not the same as willing in my simple understanding.
And, just to be certain we've covered all the bases in this game, expect your inboxes to be flooded with 12 years worth of email chain letters. Forward each one to your 15 best friends, strong women, tireless public servants, under-appreciated parents or amazing pets. AND the person who sent it to you.
Don't break the chain. FOLFOX, Fractionated Radiation and the loss of large amounts of your colon may occur if you do.
Sunday, February 10, 2008
Shades of Gray
Kevin and I "see" God's involvment in our lives through different eyes.
He sees God as a hands on manager where every decision has a right or wrong answer. Whatever the question is, there is one answer that conforms to God's will and a million others that do not.
I see God as knowning what I'm going to do in any given moment and knowing how it's going to work out, but not having laid the plan to the point of having a particular will for every detail.
So deciding about continued chemotherapy has become a struggle for Kevin to determine what God's will might be.
Sounds like a no-win crapshoot to me and I don't like things were the odds are against me at the get go. And I don't believe God does either. Where Kevin's relationship with God is black and white, mine is nothing but shades of gray.
Makes it interesting (and confusing) as we talk through these decisions about chemotherapy and radiation.
He sees God as a hands on manager where every decision has a right or wrong answer. Whatever the question is, there is one answer that conforms to God's will and a million others that do not.
I see God as knowning what I'm going to do in any given moment and knowing how it's going to work out, but not having laid the plan to the point of having a particular will for every detail.
So deciding about continued chemotherapy has become a struggle for Kevin to determine what God's will might be.
Sounds like a no-win crapshoot to me and I don't like things were the odds are against me at the get go. And I don't believe God does either. Where Kevin's relationship with God is black and white, mine is nothing but shades of gray.
Makes it interesting (and confusing) as we talk through these decisions about chemotherapy and radiation.
Friday, February 8, 2008
Lenten Fridays
Cincinnati is the most Catholic place I've ever seen. I'm a convert and we're originally from an area where the whole Catholic fish fry and festival thing just isn't done much. It's an element of my Catholic initiation that has been missing.
We thought we would change that this spring. Hit up a different parish fish fry each Lenten Friday then make the summer rounds of the festivals.
Well, it's Lent and Kevin just isn't going to be up to fish fry surfing this year. Maybe next year.
He's gets tired easily and is beyond cautious about what he eats. I know he's afraid he might somehow offend his insides and end up with a digestive rebellion that sends him into the hospital and surgery.
So our fish fry trying will flounder (har, har, har) for another year. I think it's safe to assume Catholicism and fish fries will be around next year.
We thought we would change that this spring. Hit up a different parish fish fry each Lenten Friday then make the summer rounds of the festivals.
Well, it's Lent and Kevin just isn't going to be up to fish fry surfing this year. Maybe next year.
He's gets tired easily and is beyond cautious about what he eats. I know he's afraid he might somehow offend his insides and end up with a digestive rebellion that sends him into the hospital and surgery.
So our fish fry trying will flounder (har, har, har) for another year. I think it's safe to assume Catholicism and fish fries will be around next year.
Wednesday, February 6, 2008
Ash Wednesday
It's Ash Wednesday. I had secretly set my heart on returning to Lafayette for this day. I wanted to mark the day with some familiarity--people, songs and ritual at our old parish.
Life, however, got in the way of that plan. Kevin needed to see one of his doctors today and I need to be there with him for these appointments. Again with the new of what's "normal" in our lives.
So tonight found us at the local parish. After a good private afternoon cry of disappointment and a certain embarassing amount of resentment toward the changes in my life, I determined that I could make the best of this too.
And it wasn't half bad. One of the nicer things about being Catholic is the ritual. While things aren't the same from parish to parish or region to region, things are amazingly similar because of the ritual of the Mass. And tonight that similarity was as good as the familiarity that I thought I needed.
So Lent--that time of great change and renewal--begins.
Life, however, got in the way of that plan. Kevin needed to see one of his doctors today and I need to be there with him for these appointments. Again with the new of what's "normal" in our lives.
So tonight found us at the local parish. After a good private afternoon cry of disappointment and a certain embarassing amount of resentment toward the changes in my life, I determined that I could make the best of this too.
And it wasn't half bad. One of the nicer things about being Catholic is the ritual. While things aren't the same from parish to parish or region to region, things are amazingly similar because of the ritual of the Mass. And tonight that similarity was as good as the familiarity that I thought I needed.
So Lent--that time of great change and renewal--begins.
I like you, doc, but I never want to see you again...
We met with Kevin's surgeon today.
Kev has continued to grow stronger and everything appears to be in working order. So surgery has been avoided--at least for the time being! This is GREAT news! Hopefully it can be avoided altogether, although only time will tell. He is on a "month to month" appointment basis with the surgeon now. Unless something comes up in between times. And if Kevin is feeling fine, he can cancel that month's appointment.
In any case, it was wonderful to hear that it wouldn't be happening anytime soon. Especially after the surgeon's words to us in January of hoping Kevin could recover at least two weeks before the surgery became essential.
And the biopsy result was no cancer in the lesioned areas. That is more than likely a result of radiation damage.
I like his surgeon. He spent a lot of time explaining to us with words and pictures just what was going on and what the ramifications of the various possibilities might be.
Kevin likes him because he recommends that Kevin definitely not do further radiation treatment and isn't entirely sold on additional chemotherapy either.
However, as much as we like the surgeon, I hope we never ever have to see him again.
Kev has continued to grow stronger and everything appears to be in working order. So surgery has been avoided--at least for the time being! This is GREAT news! Hopefully it can be avoided altogether, although only time will tell. He is on a "month to month" appointment basis with the surgeon now. Unless something comes up in between times. And if Kevin is feeling fine, he can cancel that month's appointment.
In any case, it was wonderful to hear that it wouldn't be happening anytime soon. Especially after the surgeon's words to us in January of hoping Kevin could recover at least two weeks before the surgery became essential.
And the biopsy result was no cancer in the lesioned areas. That is more than likely a result of radiation damage.
I like his surgeon. He spent a lot of time explaining to us with words and pictures just what was going on and what the ramifications of the various possibilities might be.
Kevin likes him because he recommends that Kevin definitely not do further radiation treatment and isn't entirely sold on additional chemotherapy either.
However, as much as we like the surgeon, I hope we never ever have to see him again.
Monday, February 4, 2008
Continuing to Heal
The days are passing and Kevin is growing stronger. He's still tires easily. The continued worry about possibly having surgery again wears him out.
But his body is cooperating well. He's healing; being very careful about what he eats and following the surgeon's directions very carefully to avoid contributing to a problem.
I think every new twinge leaves him wondering if things are going bad again.
We meet with his surgeon on Wednesday and are hoping he'll agree Kevin is doing well enough for surgery to be put off longer, maybe even not happen.
Kevin is avoiding all discussion about returning to the cancer clinic. We're going to need to follow-up soon with Dr. Skinner and I know Kevin's mind set now is that he won't do more treatment.
But his body is cooperating well. He's healing; being very careful about what he eats and following the surgeon's directions very carefully to avoid contributing to a problem.
I think every new twinge leaves him wondering if things are going bad again.
We meet with his surgeon on Wednesday and are hoping he'll agree Kevin is doing well enough for surgery to be put off longer, maybe even not happen.
Kevin is avoiding all discussion about returning to the cancer clinic. We're going to need to follow-up soon with Dr. Skinner and I know Kevin's mind set now is that he won't do more treatment.
Saturday, February 2, 2008
The Man Couch
With a possible repeat of last August's surgery on the horizon, I have been thinking about how to make things comfortable for Kevin during his recovery. When he was so sick last month and we were up several nights, I realized how miserably uncomfortable Orange Velvet (That's our sofa. The name says it all.) truly is.
Orange Velvet is a hand-off from my grandmother. One of our girls discarded it from her college apartment about the same time that Kevin first started working in Ohio. So Orange Velvet came to live here more as a space eater than anything we actually used. It's truly magnificent in its orange-ness. I've actually grown to like the kitschy quality of the thing and it's not too big, sort of sleek in design. The look works.
It is, however, miserable to sit on. Really low and the cushions don't fit on quite right anymore.
So we went sofa shopping with a budget and a look in mind. Having thrown both taste and budget to the wind, the Man Couch moved in this week. Costing twice as much as our initial discussion and being a full 16 inches longer, as well as taller, than Orange Velvet, the thing is massive in our living room. Massively brown. With recliners built in on each end.
It is truly a man's couch.
Kevin loves it.
Orange Velvet is a hand-off from my grandmother. One of our girls discarded it from her college apartment about the same time that Kevin first started working in Ohio. So Orange Velvet came to live here more as a space eater than anything we actually used. It's truly magnificent in its orange-ness. I've actually grown to like the kitschy quality of the thing and it's not too big, sort of sleek in design. The look works.
It is, however, miserable to sit on. Really low and the cushions don't fit on quite right anymore.
So we went sofa shopping with a budget and a look in mind. Having thrown both taste and budget to the wind, the Man Couch moved in this week. Costing twice as much as our initial discussion and being a full 16 inches longer, as well as taller, than Orange Velvet, the thing is massive in our living room. Massively brown. With recliners built in on each end.
It is truly a man's couch.
Kevin loves it.
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