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Monday, December 8, 2014

The twelve days of cancer

On the first day of Christmas, the cancer gave to T a bad dose of chemotherapy.

On the second day of Christmas, the cancer gave to T two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the third day of Christmas, the cancer gave to T three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the fourth day of Christmas, the cancer gave to T four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the fifth day of Christmas, the cancer gave to T five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the sixth day of Christmas, the cancer gave to T six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the seventh day of Christmas, the cancer gave to T seven lost pounds, six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the eighth day of Christmas, the cancer gave to T eight dry heaves, seven lost pounds, six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the ninth day of Christmas, the cancer gave to T nine missed meals, eight dry heaves, seven lost pounds, six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the tenth day of Christmas, the cancer gave to T ten medical professionals, nine missed meals, eight dry heaves, seven lost pounds, six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

On the eleventh day of Christmas, the cancer gave to T eleven oyster crackers, ten medical professionals, nine missed meals, eight dry heaves, seven lost pounds, six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.


On the twelfth day of Christmas, the cancer gave to T twelve days until it starts again, eleven oyster crackers, ten medical professionals, nine missed meals, eight dry heaves, seven lost pounds, six rounds of vomiting, five emesis bags, four pharmacy receipts, three anti-nausea meds, two days of chemo in a fanny pack, and a bad dose of chemotherapy.

Sunday, November 30, 2014

'Tis the season

Dear Santa,

Ah, the holidays.  Spending time with family, decorating the house, crackling fires, hot cocoa, warm cookies, and chemo. 


On Friday, T will begin round two of chemo.  Chemo: the sequel.  Last time, he did an oral form of chemo along with radiation.  That's when he had to go into Chicago every week day for twenty-eight days.  Talk about exhausting.  This time, it's a bit of a different routine.  He'll go to Northwestern for an afternoon where he'll have labs taken and chemo through the port he had implanted last week.  The chemo will last about three hours that day, and then he'll get to come home with a very fashionable fanny pack.  The pack will be attached to his port, and it will continue to dispense chemo for two to three days.  (I hope T will let me bedazzle the fanny pack.  Glitter and sparkles for the holidays!  It's all the rage in chemo chic.)  After those few days, hopefully a home health aide will come to the house to unhook the chemo from his port just so we don't have to make another trip into the city.  If not, we'll deal. 

He'll have two weeks between his chemo treatments.  We hope this rest period will lessen the fatigue that tends to go hand in hand with chemo.   The holiday season is not exactly the best time for T to be sick and tired.  Then again, I guess no season is really great for that kind of nonsense.  But T's birthday is coming soon, then Christmas, then New Year's.  The kids will be out of school for two weeks, and if it's anything like last time, I'll be frantically trying to keep them quiet so T can rest or sleep.  Maybe it won't be so bad, though.  T isn't exactly a cold weather kind of guy, so it's not like he would be out enjoying the snow in his free time.  If the weather is as bitterly cold as the random, nameless Internet sources are saying, we'll all just want to hunker down and stay warm together.  


We know how everything went down last time, and so there is a bit of trepidation going into this round.  T knows what to expect, and although this time may be completely different from the last time, it's hard to ignore past experience.  There is also the addition of the stoma and the ostomy bag this time around, and that's a wild card.  But that's life, isn't it? 


My Christmas wish is that our family can get through this next step with our sanity intact, with our love for one another still strong, with the ability to find joy in the little things, to keep making each other laugh even when we want to cry, and the holiday magic still sparkling throughout the house.  It's a tall order, but there are four believers chez Wells who would appreciate anything you can spare.  I promise we'll leave some good treats by the fireplace for you, and I hope you're able to get a good, long rest after the holidays. 



Give my best to Mrs. Claus and the elves!
Love,
K. C.
PS-It wouldn't be terrible if you wanted to leave me an elf to do the laundry. 

Thursday, November 27, 2014

Thanksgiving 2004


The day before Thanksgiving.
Crazy snowstorm, huge flakes, treacherous roads.
I watch it all from the computer lab where we are having teacher in-service.
After school, my dad braves the insanity to get me to the airport.
Thanksgiving in Vegas with Trevor, our first major trip together.
All flights delayed.
I wait for T's flight to arrive. I sit on the floor at O'Hare.  I grade papers.  I watch CNN roll a ticker across the bottom of the screen detailing the machete attack that morning at Valparaiso High School.
I'm tense.  I'm tired.
When my flight is called, I slowly, reluctantly make my way to the gate.
At last, I spot T hustling down the corridor toward me.
We are seated nowhere near each other on the plane.
It's so late when we get to the hotel.
The San Remo.  It's questionable at best.
We gamble, we laugh, we sleep.
We get dressed for Thanksgiving dinner.
I'm nervous to meet his friends.  Will they like me?
I wonder why T is sweaty in his sport coat. I ask if I look okay.
I'm not facing him when he answers because I'm looking in the mirror and futzing with my hair.
Something's missing, he says.  You're almost perfect.
Is he nuts?  ALMOST perfect?  I turn around to give him The Look.
He's on one knee in front of me.
My first thought is how did he get down there?  Then, WHY is he down there?
And I understand.
Love.  A diamond.
(Finally.)
No wonder he's sweaty.
I hear every word he is saying but all I can do is say Ohmygod over and over in my head.
His face is slightly terrified but determined.
He's it.
I say yes.  Yes, yes, Ohmygod, yes.
And ten years later, I would say yes again.
Even at the San Remo.


Sunday, November 2, 2014

Just say yes

One of the biggest stressors in life is illness, and in the past few months we have all learned how true that is.  Since Trevor was diagnosed in May, we have been through different stages of highs and lows.   I hoped that once the surgery was over, we might be able to breathe a sigh of relief and find some normalcy again.  Not so much.  At least, not yet.

Don't get me wrong: I'm thrilled that the surgery is over and T is back home.  It's comforting to have my crew back together again under the same roof.  Even though that has happened, things aren't exactly status quo again.  As part of T's treatment, he temporarily has an ostomy bag while his bowel is healing post-surgery.  As with most things in life, it's easy to think that it isn't a big deal when you're not experiencing it yourself.   He still has months of chemo left to do.  He's tired and not regaining his strength as quickly as he would like.  Having a serious illness changes a person; no one can face his own mortality without coming out a little different on the other side.  There is a learning curve, and we're still figuring out how to deal with everything.

And just as much as he is trying to figure out what his new normal is, the kids and I are trying to do the same.  Obviously, I am better at dealing with the change than the kids are, and I spend a lot of time reassuring them and trying to make things as relatable as possible.  I don't think they fully understand that we still have a long road ahead of us, and quite frankly, I don't have the heart to tell them that the surgery wasn't the end of all the tests, treatments, and upheaval.  I know it's difficult for T because he can't do the same things he was able to do before the diagnosis.  Truthfully, it's hard on everyone.  But that's marriage, you know?  I remember my mom telling me that marriage is rarely exactly 50-50.  Sometimes it's more like 30-70 or even 88-12, but as long as each spouse takes turns giving more or less, it's all good.  This is just one of the times that the percentage is tipped a bit more my way, and when it's all said and done, I'll have my turn to breathe.

Even if it were 0-100 right now, which it most certainly is not, I have had plenty of people who are willing to help.  It was pretty difficult for me to say I would accept the help at first; no one wants to admit that he/she can't do everything alone.  I thought I could take care of every little thing with no help from anyone else.  I mean, I probably could have, but I guarantee that I would have ended up in the hospital myself from sheer exhaustion.  I also don't know half of the time what I want or need to be done because my mind is constantly spinning in a thousand different directions.  Selfishly, I suppose I thought that if I personally could keep everything rolling, nothing could fall apart.  Ever.  I truly felt like I was handling everything okay until I had a day when I couldn't remember smiling once, not even when the kids were around.  I spent that evening beating myself up, and I vowed that I wasn't going to let that happen again.  It was a total Scarlett O'Hara moment in my own mind.  Plus, Dr. Mike, my awesome frieneighborist (that's my friend/next door neighbor/dentist at The Centre for Contemporary Dentistry) informed me at my checkup last week that I had been grinding my teeth so hard in the night that I had managed to crack a tooth.  Dude.  I guess if I'm gonna do something, I'm gonna give it my all.

It took T having cancer for me to realize that asking for help or even accepting the help offered to me didn't make me a weak person; it made me stronger in the end so I could continue to take care of my family.  I mean, if we're going to go through this whole craptastic situation, we might as well learn something.  AmIrite??  Sometimes I feel a twinge of guilt because I don't know how I will ever begin to repay people for their kindness and generosity, but feeling guilty isn't going to do anyone any good.  Learning to say yes has been a very humbling and freeing lesson for me.  From the bottom of my heart, I thank all of you who have helped us along the way.

Friday, October 17, 2014

Ups and downs

A few years ago, T and I watched a ridiculously cheesy TV show called Forever Eden.  The premise of the show was pairing off single people and seeing how long they could stay at a luxurious resort.  To announce a twist or competition, the hostess would place a huge fake apple on the contestants' bed and remind the audience that the apple could bring good...or EEEEEEEVIL.  I feel like we have had an enormous apple placed on our bed this week, and with it, we have had both the good and the bad.

Monday's surgery went well overall.  It started later than expected, so it was a long day of waiting for everyone.  When the surgeon came out to talk to me, she delivered two kinds of news: the tumor had all been removed but she thought the cancer had spread to the bladder.  Thankfully, we found out the next day that the cancer had not spread any further than they originally thought.  The bladder was perforated, but the explanation was that the radiation had caused the tumor to stick to the bladder and the perforation happened when the tumor was removed.  Score one for good news!!

I stayed in the city on Monday night so I could get to the hospital bright and early Tuesday morning.  It was great to see T, but it was also really weird.  He had a morphine pump, and by God, he was not afraid to use it.  The meds made him flat and expressionless, and if you know T, you know that's not his normal state.  He was in quite a bit of pain, but it was controlled by the meds.  I stayed that afternoon, but I went home later that day to be with the kids.  No matter where I was, my heart was always split in half between Northwestern and home.  

The next day was fantastic.  As soon as I got the kids off to school, I headed into the hospital.  T was up and alert.  His morphine pump was gone, but he had more energy to walk around and be out of bed.  He joked around and talked, and I was thrilled to have my T back.  He shaved, and I helped him wash his hair.  He was even allowed some soft food, although after about four bites, his appetite was gone. When I left that afternoon, I was confident that his recovery was going well and he was on track to come home Friday.

Thursday wasn't so great.  My brother and I drove in to visit, but we ended up only staying fifteen minutes.  T had been nauseous and vomiting all night, so he hadn't gotten any sleep.  He was sitting up in a chair when we got there, but he was obviously fading fast.  He was too exhausted to have anyone around, even me.  He texted me later in the day to let me know that he had still been vomiting, and the docs had decided he needed an NG tube.   The tube was supposed to remove whatever was in T's stomach; apparently his bowels weren't "awake" after surgery and that was causing his nausea.  His nurse assured me that this was all completely normal after anesthesia, but what is normal to her sure seemed completely wrong to me.  The only good news of that day was that T's catheter was finally removed. 

My dad and I arrived at the hospital this morning, Friday, to find a wan and weary T.  The vomiting had continued during the night and into the morning.  At one point, the NG tube started to choke T, and the nurse had to remove it.   Unfortunately, it had to go back in.  Two different people tried to re-insert the tube with no luck.  When the third person came in to try again, T told me to vamoose because he didn't want me in the room while it was going down.  He was so run-down that having people in the room wasn't going to do him any good, so my visit was cut short once again.  There was one bright moment, though, when I saw my guy's true self.  I told him I wished I could stay longer, he told me that I tend to get annoying after ten minutes, fifteen minutes tops.  That's the Trevor I know and love. 

I know that things will get better, and I know that all of this is only temporary.  Even knowing those truths doesn't stop me from feeling completely helpless.  I want to DO something to help him, to fix him, to bring him home.  I also know that the most important thing is that the cancer is out; I'm just selfish enough to want the cancer gone AND for T to be comfortable.  I want him to feel good, and I want him to come home.  The week of good and eeeeeevil continues, and I just hope it comes to an end with more good than anything else. 

Thursday, October 2, 2014

Moments

It is one of those perfect fall days: sunny but crisp.  Someone in the neighborhood is burning leaves, and the slightly acrid smell in the air is comforting.  The kids are outside after dinner, and their screams of laughter echo throughout the gloaming.  Those are some of the happiest sounds I have ever heard, and I'm trying to imprint them into my memory.

My mom and I visited a friend a couple of days ago.  We met the year I was student teaching at a small Catholic high school in Indianapolis.  I ended up teaching at that same school for four years, and our friendship grew and cemented.  We're sort of an odd couple: there is a big age difference, we don't have a great deal in common at the core, and we have lead extremely different lives.  And yet, of all the amazing people I met those four years, he is the one I see the most often, the one who has been most consistent in my ever-changing world.

Jim isn't the friend who will bring a pint of ice cream and a DVD when I'm feeling sad.  Quite the contrary.  When I had to move out of my house in Indianapolis rather abruptly because my first husband decided that being married to me wasn't his thing, Jim brought boxes and helped me pack.  I remember crying while I packed my broken life, and he kept telling me to quit crying because it wasn't helping me get anything done.  "Oh, stop it.  You're fine and this is all going to be fine.  Now, where do you want all these books?  You know you have way too many books, don't you?"  And he was right.  Well, one can never have too many books, of course, but I was fine after that mind-numbing heartbreak.  I AM fine.

We travelled together, had meals together, had drinks together, laughed together.  Every time I moved, which was oddly quite often, he came to help put my new places into working order.  He became friends with my whole family, my new (much better) husband, and eventually my children.  He even visited my parents in Valpo when I was still living in Lexington.  We didn't see each other as often as we used to, but we talked on the phone and were always in each other's thoughts.

The phone rang a few months ago as I was making dinner.  The kids were asking for the umpteenth time what I was making, T was in the living room chatting with his parents, and I was frazzled.  Normally I ignore the phone when I'm busy, but I glanced at the caller ID.  I saw the name and number of a friend of Jim's and I went cold.  She told me that there had been an accident, and Jim was in the hospital with what the doctors thought was a stroke.  The next few weeks were agonizing as I made call after call to try to get information.  After a month in the hospital and one measly week in a rehab center, he ended up at his niece's house a little south of Indianapolis.

My mom and I made the trek to see him, and I carried the warning in my head that he was suffering from expressive aphasia.  Logically I knew that he would be different, but the tiny Pollyanna in my head assured me that Those People were wrong.  Physically, he didn't seem much different although he was unshaven, a sight that I had never seen in twenty years.  He knew who we were straightaway and gave us both hugs, but I could immediately see the effects of the stroke.  He claimed he didn't know we were coming to visit, that people had been lying to him.  He couldn't easily find his words, he went off on tangents that we couldn't understand, and he just looked...old.  There were some things that seemed decently fresh in his mind, things about 1995 when a bunch of us starting teaching and hanging out together every free moment outside of school.  He somewhat remembered travelling with me and how much fun we have always had together.  He didn't remember where he was staying or why my mom was there or even his own beloved cat.  Every once in a while, there were glimpses of my old, very funny, very smart friend, but they were few and far between. I tried to stay sunny and happy and positive, but inside, my heart was breaking.

I had a lot of time to think on the three hour drive home.  My mom and I went over and over the conversations, trying to dissect them and find the old Jim.  It all made me tired.  I mean, bone-tired-weary-to-the-core-curl-up-in-bed-on-a-rainy-day-taking-care-of-a-sick-kid-in-the-middle-of-the-night kind of tired.  It's impossible for me not to worry about my friend.  I know he is getting good care with people who truly care about him in every way, but that doesn't stop me from draining my own emotional reserves on his behalf.

And I want this to all mean something.  That's why I am trying so hard to embrace the small things in life and enjoy living as much as I can.  That's why I want to memorize the sounds of the kids' laughter and their weird comments and their beautiful smiles.  Jim obviously isn't gone from this mortal coil, but he's not completely here, either.  So I'm trying to embrace life and enjoy every moment.  Trying.  But that's so much easier said than done sometimes.  I can't always find the joy in every given moment. When I am in the middle of telling Lottie to focus on her homework for the twentieth time while Dallas drones on and on about dinosaurs and the clock is telling me that I should have started dinner already and both kids are hungry but not for what I'm cooking and the phone is ringing and my eye is twitching,  I can't channel my inner-Zen and think about how much I will miss this all when the kids are grown and gone.  Instead, I try to get through the minute by minute drama so I can eventually snuggle with freshly shampooed heads and find a sweet spot of time when no one is fighting or crying or arguing or pouting or hungry or hurt or angry or tired. And I think about Jim and think I should really work hard at finding those great moments because the future is so uncertain and fragile, but I know Jim would think that was a bunch of schmaltzy hooey and tell me to just keep on keepin' on.

So I'm raising my kids the best way I know how; I'm constantly thinking about T's upcoming surgery; I am pretending that the surgery isn't happening; I'm having dreams that end with me waking confused and bleary; I'm attempting to oversee a new deck project at our house; I'm reading books; I'm being a friend, a daughter, a mother, a sister; I'm smiling when I can and crying when I can't; I'm drinking too much coffee; I'm riding my bike; I'm trying not to think too much; I'm over-thinking everything; I want to be left alone; I want to be surrounded by friends; I'm taking one breath at a time.  I'm going to keep going because that's what Jim is doing, and that's what I can do, too.  For now, that's enough.

Tuesday, September 23, 2014

Of sleepovers and sprouting

We have all been marching along with the new school schedule this year where both kids get on the bus at the same time and come home at the same time.  I like that I don't have to get in the car to drive Dal to school, but sometimes trying to get both kids ready at the same time in the morning is maddening.  There is always the rush of getting dressed, brushing teeth, double-checking backpacks, and trying to stay clean.  We seem to be getting into a pretty decent groove, so hopefully that will continue.

Along with the new school year comes new teachers and new friends.  Both kids are absolutely nutso about their teachers, and they're both usually enthusiastic about going to school every morning.  This last week was exceptionally long for Lottie, though.  Monday night, I was at a meeting at the school when I ran into the mother of one of Lottie's pals.  Lottie and the girl are in different classes this year, but they still play together during recess.  The mom asked for my phone number so she could text me information about the girl's birthday party that was going to be on Saturday.  A sleepover birthday party.  The sleepover part was optional, but anyone who knows Lottie knows that she is all about keeping a party going for as long as possible.  I made the mistake of telling Lottie about the invitation before I had received a text from the mom.  Rookie error, right?  The rest of the week, I was peppered with questions about the party, whether or not I had heard from the mom, and if I thought Lottie could just show up at the party.  Saturday morning dawned with no word about the party and a 7-year old crying over breakfast.  I cried, too, because I felt like I had somehow let her down, and I wished I had never mentioned the party in the first place.  We planned a fun day of playing outside, a special dessert, and a family movie night; I could tell, however, that her mind was on the party most of the day. 

The sky began to darken around 2:30 that afternoon, and I called the kids inside.  I was in the middle of making the chocolate dessert that I knew my little sweet-toothed girl would love when I heard the chime of a text message on my phone.  I picked up the phone in between separating eggs to see a text from the mom inviting Lottie to the party...the party that started in twenty minutes.   All at once, I was angry, excited, irritated, incredulous, and frazzled.  I hadn't bothered to get a gift because I thought Lottie had been forgotten.  Lottie was sweaty and filthy from playing outside all day.  A serious thunderstorm was headed our way.  I could think of a million reasons why she shouldn't go and only one reason why she should.  Even though I wanted to erase the message, I knew I should let her go to the party.  After a quick whispered conference with T, I told Lottie what was up.  I know it sounds completely hokey, but the sun shone out of her eyes.  She hadn't been left out, and she was going to her first slumber party.  She ran upstairs to take a quick shower while T packed an overnight bag for her.  I tore downstairs to find and wrap a suitable birthday present from the box of surplus gifts I keep in the basement.  Before she left, I held her face in my hands and told her that if anything felt off or she just didn't want to stay, she could call us any time of the night to pick her up.  She hugged me tightly, kissed her brother, and skipped out to the car with her dad.  About two minutes after they left, the tornado sirens blared, and I wanted to run out in the street and call them both back home. 

I spent that evening with T and Dallas, and although it was cool --and totally weird, too--to be able to focus on just one kid, my head was with Lottie.  I wondered if she was getting along with the other kids at the party.  I wondered if the threatening skies and the heavy rains were scaring her.  I worried that she wanted to come home but was too afraid to say so.  Would she sleep well?  Would she sleep at all?  (And before all you other parents chime in with the "you-have-no-idea-wait-until-she's-a-teenager" stuff,  just don't.  It's never helpful and it diminishes what I am feeling now.  Not cool.)

Of course, in the end, Lottie had a fantastic time at the party.  She ended up staying with the birthday girl for most of the next morning while T and I paced around the house wondering when she would finally come home.  She seemed exactly the same but also a little older, a little more grown up.  It was her first night staying with anyone who wasn't family, and she loved it.  I was thrilled that her first sleepover had been a success, but if I am being totally honest, I was a little sad, too.  I realized that the first slumber party was just the beginning of many firsts that T and I wouldn't be a part of. Spending the night at someone's house doesn't mean that she's ready for her own apartment, of course, but it's the start of a whole new world for her.  She is starting to realize that there is so much more to life than just our home and our family.  My job as a parent is to give her those experiences and encourage her growth in every way; I just didn't know that it would all start so soon.  Teaching her new things will continue to be my job, but now a new part of my job is making sure that home is where she will always have a soft place to fall. 

Not too long after reading time Sunday evening, I noticed that I hadn't heard a peep out of Lottie's room in a while.  I went to check on her, and I found her fast asleep with her Lamby in her arms.  I took a minute to drink in her quiet, sleeping face before I called T in to see how quickly she had passed out.  I'm willing to embrace her newfound slice of autonomy as long as I can still tuck her in most nights for as long as she lets me.