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.
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