Miracle on the street of Wells

I love Christmastime.  I love the cold weather, bundling up in sweaters, hot cocoa by the fire, giving gifts, and snuggling up with my family.  I was a little worried that things would be off this year, and although it's not our normal Christmas, it seems as though things will be better than I thought.


T had his second chemotherapy infusion last week.  The first one was not exactly carefree: he ended up in the ER due to dehydration.  He was a zombie for at least four days, and I was terrified.  I know he was dreading the second infusion as soon as the first one was over.  After all, going into something that he knew would make him sick wasn't something to look forward to.  Luckily, the staff at NMH was, as always, on its A game and did some futzing around with the chemo dosage and anti-nausea meds.   Apparently there is a good twenty percent of leeway when it comes to the dosage, and T's doc lowered his a bit to see if it would help.

Help it did.  He has had very little nausea compared to the first time, and he has been able to eat and drink normally.  He also figured out that although it is encouraged for chemo patients to eat before a treatment, it's not such a good idea for him.  Hindsight.  My amazing dad took T in for his treatment, and I spent the whole day trying to stay as busy as possible so I didn't think about what the effects might be.  Imagine my surprise and delight when they arrived home and T wasn't clutching an emesis bag.

The sense of relief for me was immediate: I felt like an enormous weight had been lifted off my heart.  I didn't realize how tense I had been, and then all I wanted to do was sleep for about twenty hours.  T was obviously happy as well, and I think he slept well that night knowing that not every infusion would result in days and days of sickness and misery.

 T is still fatigued, but he'll be able to fully participate in our family's holiday happenings.  Even though there are still three days until Christmas Day, my Christmas wish has come true.  I can't think of anything else that could make me as happy as this did.  Well, unless someone got me a unicorn because that would be pretty cool.

From our home to yours, Merry Christmas, and may all of your Christmas wishes come true.

Credit: pwsa.co.uk

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.

'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. 

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.

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.

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. 

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.

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.  

Questions or concerns

We met with Trevor's surgeon yesterday at Northwestern and set a date for the surgery.  October 13 is the big day, so this is really happening.

I like the surgeon a lot: she's funny and an absolute straight-shooter.  She tells it like it is, and she doesn't sugarcoat anything.  She described the pre-op routine, the surgery itself, and what would happen post-op.  T and I spent that discussion time asking a few questions and nodding our heads like bobble dolls.  At the end of the spiel, the doctor asked us if we had any other questions or concerns.

Did I have any concerns?

I mean, duh.

You know how in the movies there is a montage of life events that pass through someone's mind as that person faces danger?  That happened to me, except instead of past events, all I could see was the future.    I saw the next fifty years of our lives race before my eyes in the period of about five seconds.  So many happy times were there, flying by at light speed.  T was in every thought I had, so it wasn't like I was picturing life without him.  On the contrary, I was picturing our future together, both as a family and as a couple.

What I wanted to tell the doctor was that there are always concerns.  Always.  When someone is having a serious surgery, it's always a concern.  Any time there is anaesthesia or blood, there is a concern.  Any time my husband is going to be lying on a table for four to six hours, there are going to be concerns.

What I wanted to tell her was that she was going to be taking care of the man who makes me laugh every single day, of the father of my children, of the smartest guy I know, of my best friend, of the love of my life.  I wanted to tell her that she was in charge of getting every bit of that tumor out.  I wanted to tell her to get a good night's sleep and have a healthy breakfast that morning.  I wanted her to know that although I have the utmost confidence in her training and abilities, I will still be pacing in the waiting room, drinking cup after cup of coffee, and trying not to bite my nails until she comes out to tell me that my husband is okay.  I wanted to tell her that although she isn't a cardiologist, my heart will be in her hands.

But I didn't.  Instead, Trevor and I looked at each other, shook our heads that we had no other questions and concerns, and went to lunch.  For that moment, that was enough.

2,190 days

My baby,

Today you are six years old.  I know I say it every year, but once again, I have no idea where the time has gone.  It seems like only yesterday when the doctor put you in my arms, and I thought, "A boy?  I have no idea what to do with a boy!"  Despite my concerns, I think you have turned out pretty darn well so far.  It's hard to believe that you are the same chunk-a-bunk baby who basically slept for the first twenty-four hours of your life, making everyone but me concerned that you would never wake up to eat.  Once you did wake up and start eating, you basically never stopped.

You have done so many things in the last year.  You finished pre-school at the Montessori Academy of Valparaiso, and you truly thrived there.  I will always be grateful for the wonderful program and amazing staff who helped guide you through the last two years.  Because of everything you learned there, you were more than ready to enter Kindergarten this year at Flint Lake.  I love that you and Lottie are at the same school, on the same schedule, and riding the same bus.  I thought you might be nervous about riding the bus to school, but you hopped on the first day like a boss and you haven't looked back again.  You're on the twenty-seventh list of sight words already, so I am eager to see what happens when you have mastered all of the lists.  Perhaps you will start reading Camus next.

Your interests are varied as usual as you begin your sixth year.  There has been a surprising dinosaur renaissance which prompted you to tell me that your school has a "fairly decent selection of dinosaur" books.  You still enjoy Star Wars, Teenage Mutant Ninja Turtles, and anything that involves any type of weapon.  Sometimes I worry about your love of "shooting" but then I remember that you love to sit down with a good book just as much.  Everything in moderation, my love.  Scatological humor is still number one here as well.  When you're feeling especially naughty, you talk about poop or butts because you know it annoys me.  I have a feeling that annoying me thing will continue for the rest of my life.

You're a funny kid because you're very literal, and things are pretty black and white for you.  You and Lottie are about as different as siblings could be: that makes it very hard for Dad and me to ever know exactly what to do or how to do it.  I think you're breaking out of your shell a bit, though, and enjoying new things with an ease that you didn't have before.  You have really enjoyed your tae kwan do class, and I hope it's something you continue to practice.  I love that you're in class with other kids but the work itself is individual.

One of the most exciting things in the last year is that you outgrew your egg allergy.  A whole new world of food has opened up to you now.  Some of the things you have been really excited to try, but eggs themselves, whether hard-boiled or scrambled, are not your favorites yet.  Maybe someday.  You're naturally a little wary of trying things with eggs in them: after all, you spent the first five years of your life being told to stay away from eggs.  However, you're slowly starting to accept that you can try new things without the fear of getting sick.

You enjoy doing things by yourself like reading or playing with Legos®, but you hate to be alone.  You want someone nearby at all times but that person should really not talk to you unless you desire interaction.  Total paradox.  I think it's great that you're so good at entertaining yourself, though.  That is a quality that will serve you well throughout your life.   But don't ever be afraid to get out of your comfort zone and open yourself up to others; I'm sure you'll find plenty of people who share similar interests.  After all, you're an amazing guy with a lot to share with the world.

*I love that you still love to snuggle with me before bed every night.
*I love that you are such a great brother.
*I love the way you are kind to Mimi and PopPop's dog, Sally, and help us take care of her and how you constantly tell Judy that she's the best cat in the world
*I love how you sometimes chill out on the living room couch and stare at the trees out of the window
*I love the way you laugh with your entire body
*I love the way you have started to create your own things with Legos instead of just following the building directions
*I love your bone-dry sense of humor
*I love how excited you are when we get a new catalog in the mail, especially if the catalog has anything to do with Halloween
*I love your freckled nose and your gorgeous, long-lashed blue eyes


Dad and I are proud of beyond compare.  In my wildest dreams, I cannot even begin to imagine all of the wonderful things life has in store for you.  Promise me that you will always stay sweet, forever love to read, and never ever change who you are inside.

You are always my best, best boy,
Mom

Shrink, shrank, shrunk

Today was Trevor's first CT scan post-chemoradiation, and the first time he has been back to NMH since chemoradiation ended.   He had the pleasure of downing some lovely banana flavored barium concoction, waiting for an hour, then being scanned for five minutes.  We had a quick lunch together then met with the medical oncologist.

The news was great: the tumor has gotten smaller and nothing has spread.  YAY doesn't even begin to describe how happy we were.  Things are progressing as they should, and it looks as though surgery will be scheduled for sometime within the next four weeks.  He'll have a month of recovery time post-surgery, and then he'll do a second round of chemo for about four and a half months.  He won't have to go into NMH every day like he did for the first round, so that is already a big improvement.  Plus, think how awesome it would be if he could keep the hospital gown and dress like an escaped mental hospital patient for Halloween!  Right?

Having a better idea of when the surgery will happen has been, I think, a relief to both of us.   The last month of normalcy in our lives has been fantastic, but we both know it is just a holding pattern until the next step in the plan to kick this cancer's booty.   We are trying to enjoy spending time together, spending time with the kids, and doing typical family activities.  In the back of our minds, though, we know it's only a matter of time before it will all come to a screeching halt yet again.  It's difficult to live with the mentality that we need to get a certain amount of things done "before." First we wanted to do things before chemoradiation, and now we want to fit in as much as we can before surgery.   Sometimes it feels like we're living at a far more frenetic pace than we were pre-cancer, and we really should be slowing down to enjoy the quiet, unexpected moments.  

I'm trying to take the time each day to stop and be mindful of  the small things that make a life a life: Trevor making me laugh until I cry in the middle of a quiet exam room, Dallas holding my hand as we snuggle at night, Lottie's enormous, beautiful blue eyes watching me as we read _Harry Potter and the Chamber of Secrets_ together.  These are the things that truly have meaning, and these are the things I need to learn to appreciate.   If this stupid, horrible, ruthless cancer has taught me anything so far, it's that all I really need to be happy can usually be found within my reach.   If that doesn't make me one damn lucky gal, I don't know what does.   Well, that and a big lottery win.   I could make the Mega-Millions have a great deal of meaning if given the chance.  

He is the eggman, goo goo goo joob

For the first time in five years, Dallas is now one of the zillions of people in the world who can enjoy an omelet, a fritatta, a custard, or a lovely quiche.  The boy still can't have any dairy, but he is no longer allergic to eggs.

About a month ago, I took Dal in for a check-up with his allergist.  He hadn't been tested for his allergies for a few years as his doctor didn't see the point of putting Dal through unnecessary testing.  However, he did recommend that Dal be re-tested before beginning public school, and like the dutiful momma I am, I took him in.  I was anxious because the first test was a blood test, and children are typically not great when it comes to having someone stick a needle into their arm to draw bodily fluid.  I tried to stay very calm as we walked into the lab, and I promised the boy a trip to Target for a new toy if he could get through the needle stick without struggling or freaking out.  Before the nurse even got to us, I was sweating like I was standing in the Sahara Desert with no umbrella or water.  Turns out I could have saved all of my worry (and a jaunt to Target) because Dallas was fantastic.  He didn't move a muscle when the needle went it, and he even looked at the blood coming out and said, "That is SO awesome."

The blood test surprisingly came out negative for the egg allergy, so we moved on to the next step: the skin test.  The nurse made teeny scratches on Dal's arm and then dropped a bit of various proteins on the scratches to see if he would react to them.  A enormous hive popped up right away on the spot where the cow's milk protein had been placed, so we knew the dairy allergy was sticking around.  But once again, the scratch test was negative for the egg protein.   We quickly ran out that day to get an egg from a local convenience store.  The nurse did a fresh food challenge which involved putting actual egg white and egg yolk onto Dal's skin to see if it would react.  He passed that test with flying colors, and we made an appointment for the next step: the food challenge.  Dun dun DUUUUUUN!

Unfortunately, our first appointment was cancelled due to an emergency with the doctor.  Doh.  We rescheduled and went in yesterday, Friday.  Dallas couldn't have any sort of antihistamine for three days prior to the challenge, and he couldn't eat for two hours prior, either.  The appointment was in the Crown Point office (ugh) at 9:00 AM, so I woke Dal up at 6 that morning to shove some food into his face before it was too late.  (For those of you who know Dallas well, you understand the terror I felt knowing that he couldn't really eat the entire morning.  When he doesn't eat, he's like a combination of Godzilla, Denis Leary, and Bobcat Goldthwait.  It's ugly, really ugly.) The challenge went like this: Dal ate a teeny piece of hard boiled egg, was monitored for twenty minutes, then ate another teeny piece of egg.  Picture that for three and a half hours, and you have the gist of the challenge.  Dal complained that the egg was rubbery, but he willingly sent every piece down the hatch with no protests at all.  By 12:45 PM, we had confirmation that Dallas had outgrown his egg allergy.  Not only was he free to eat eggs, but he has to eat something with egg in it every day for the next two weeks.   Somehow I don't think he's going to be asking me to hard boil any eggs for him the near future, though.  He got his fill of those yesterday.

I made angel food cupcakes for him today, and it was a totally surreal experience to bake with eggs again.  I mean, everything I have made in the last five years has been egg- and dairy-free because I couldn't stand to ever have Dal feel left out of anything.  Separating the eggs for the cupcakes felt wrong, like I still thought I was going to essentially poison the kid by setting the cupcake in front of him.  Understandably, he's a little hesitant to eat anything with egg: we have spent the last five years telling him not to touch eggs and anything with eggs in it, and now we are basically forcing him to eat the incredible, edible egg.  Dallas is a by-the-book kind of kid, so this will take some time for him to get used to.  But in the meantime, I get to rediscover recipes that I have put away for years and try out some new ones as well.  The nurse said that outgrowing this allergy would make my life easier as far as food preparation, and I guess she is right.  Checking labels is no big deal, and cooking without the allergens is truly second nature now.   I'm just happy that a new world of food to explore has opened up to my best boy.

One and done

If I could pick one word to describe the mood chez Wells lately, the word would be TIRED.  We are all, for one reason or another, pretty fatigued around here.  The kids are tired from being kids: swimming, playing on the zip line, running around like crazy, and spending every waking moment outside.  We have had some wonderful visits with friends and family in the last couple of weeks as well.  I'm tired from keeping all of the proverbial balls in the air and from simply being around all of the kid activity.  And T?  T is tired from the pesky poison that has been running through him for the last five weeks.  

This last week, especially the weekend, was a difficult one for T.  The fatigue has built up over the weeks, and it's completely overwhelming at this point.  Unfortunately, the fatigue doesn't dissipate with even a full night's sleep, and one of the lovely effects of the chemoradiation is that T rarely sleeps more than three hours at a time anymore.  I know he is looking forward to these next recovery weeks so he can hopefully get more comfortable and manage to get some decent REM sleep.  

Along with the physical fatigue comes the mental fog.  It's hard to concentrate for very long, and the lack of sleep doesn't exactly help anything.  He tends to feel guilty that he isn't helping out more around the house or doing more with the kids.  No matter how many times I tell him that he has to rest, he resists until he literally cannot stand to be vertical any longer.  

But today, y'all, today is the day.  Today is the LAST day of this round of chemoradiation.  This is the last time for a little while that T will have to go into Chicago for his radiation treatment, and the last day he will have to swallow the horrible chemo pills.  Written down, it doesn't seem like such a big deal, but believe me when I tell you that we have all been waiting for this day for weeks.  Finally, T's body will have a chance to really rest and begin the healing process.  He'll need this time to physically and mentally prepare for surgery and the next round of chemo to come...but we're not going to think about that right now.  Instead, we're going to reconnect as a family and hug each other a lot.  It's time to think about school starting and Dallas's upcoming birthday and enjoying some much needed time together.  We'll get a chance to enjoy the now instead of always counting down the days until the end of treatment.  And that right there is something to celebrate.    

And then there were ten

Ten more chemoradiation treatments to go for my love.  If they are anything like the last eighteen, he is in for two more weeks of exhaustion and nausea, watching _The Love Boat_ and _Miami Vice_ in his recliner because he cannot do anything else.  Two more weeks of sleeping and more sleeping; two more weeks of a queasy stomach and Cream of Wheat.  Trevor has been really compliant and uncomplaining, and I'm incredibly proud of how well he is handling everything.

Sometimes I'm not certain the rest of us are doing so hot.  Although the kids are still fairly unaware of all of the details or just how serious this cancer is, they're both agitated and jittery.  Lottie has become even more worried about things than she normally is and full of "what if" questions.  Dallas is oddly more high-energy than normal, but it's edged with slight anger and irritability.  I spend a lot of time reassuring them that we'll all get through this and Trevor will be okay, but time is very elastic to little kids.  The thought that all of this will continue on into 2015 is more than they can understand, more than they can handle.  They want to know when Dad will be better, what day, what hour.  I can't give them those exact answers, and it makes me feel helpless, inefficient, and just completely worthless.  I struggle with keeping things normal in a really abnormal situation.  There still has to be routine and discipline, but how much is too much?  When is enough enough?

I spend the daylight hours trying to make Trevor as comfortable as possible and trying to continue with everyday life for the kids.  At night when everyone else is asleep, I have time to slow down and take a quick look inside myself.  Most of the days, I don't see a lot but a tired mom who has done a decent job of keeping all the balls in the air that day.  But every once in a while, I see a caricature of a pouty child who has a "why me" speech bubble coming out of her mouth.  I want to be in one of the happy family pictures I see on Facebook of people at the beach, playing in the waves, smiling with ice cream cones.  I'm not jealous of their good fortune; I really enjoy seeing how different people are spending the summer.  It's not the actual traveling I miss but rather the idea of a carefree time of togetherness.  Sometimes I do wonder why it had to happen to Trevor.  What did he do, what did we do as a family, to deserve to have to deal with this all?

 Logically, I know it's all random chance and happenstance: Our family wasn't chosen specifically.  We're not being punished or singled out.  This is just some rotten stuff that is happening in the now.  It won't last forever, even though sometimes it seems like it will never end, and it WILL get better.  We are lucky to have family and friends who do so much for all of us, and it's frustrating to me that I'm not in the position at the moment to give a lot back.  I yearn to rediscover my own availability to others and to find one single moment when cancer isn't floating just above each thought I have.  I want to stop living in the world of When This Is Over.  It'll be a lengthy journey, but I'll have to keep moving forward until I can find all that I seek.

The wheels on the bus

Things continue to go round and round chez Wells.  Luckily, Trevor seems to be feeling better this week.  Mind you, he's not dancing a jig when he wakes up in the morning, but he's not lying on the bathroom floor, either.  Any progress is a win.  Today is his twelfth treatment, so it's great to have him  in double-digits.  The fatigue still continues to overwhelm him, and he spends a lot of time resting.

There have been a lot of difficult things about T's cancer and treatment.  I think I have felt every emotion known to man every day since the diagnosis.  Living on such a fragile roller coaster is exhausting for all of us.  The enormity of it all tends to make the little things seem even bigger than they are, and that can put everyone on edge.  Well, it mostly puts me on edge.  I'm used to taking care of everyone and everything, and when I can't do that, I feel helpless.  I'm currently keeping all of the plates spinning, but I know my own is starting to wobble.  I am not feeling my best, I'm snappish, and I'm not sleeping well.  As selfish as it sounds, I have been neglecting myself and that's not helping anyone.  You know the whole thing about how adults are supposed to put on their own oxygen masks in case of emergency then help children?  My mask is lying on the floor in a battered heap.  I need to do a better job of taking care of myself so I can resume taking care of everyone else.  

I know that the kids have sensed the tension flitting around the house even though both T and I do our best not to let anything show.  L & D have been whinier than usual and there have been more tears than normal.  It's a really difficult line upon which we teeter, the line between telling the kids the truth and keeping them protected from what they just don't need to know.  They know T is sick and has to have treatments every day.  They know that cancer is a serious issue and that he can't do as much as they would like him to do.  Although they KNOW all these things, they truly have no idea what's going on.   I don't want them to have full understanding because they're too young to handle that responsibility.  (I'm an adult, and I'm not certain *I* am handling the responsibility all that well.)

I find myself speaking on eggshells, as it were, because I don't want to reveal too much to the kids.  L started a little fund in a glass jar for our next trip to Disney.  We had a trip planned for December, but considering T will be recovering from surgery and going through the second round of chemo we know the trip won't be happening.  It's heartbreaking to see L count the money in the jar, but I know it would be too much to tell her that we even had a vacation planned in the first place.  (To be fair, I can't quite seem to hit the 'cancel' button yet, so it's technically a to-be-cancelled trip.) Dallas still seems blissfully unaware of what is happening but he is definitely feeling it all, too.  He has been angrier than usual, melting down over things that normally wouldn't bother him and sleeping on our floor almost every night  It is pretty amazing to see how much kids can really sense even when they can't quite put a finger on what everyone else is feeling. Kids can be wicked perceptive...until it's bedtime and parents desperately want some time alone.  Then that incredible perception goes right down the drain.  I'm trying to keep life as normal as possible, but frankly, none of this is normal.

This whole situation is still a work in progress, and we're all learning how to deal.  I'm thankful that T and I are still making each other laugh even when we probably want to cry.  This is all new territory for all of us, but at least we have each other.

Just as an added bonus, here's a picture of Lottie and my niece Kate in Lafayette.

There's no crying in (beach)ball

What a week.

To begin with, the kids' schedules were completely thrown off because of the holiday.  All of their normal summer activities were put on hold for the entire week.   We had nothing planned for a week.  Some of you are probably thinking that it sounds like a great summer week full of spontaneous joy. You would be wrong.  Simply wrong.  Oh, we had some fun, but we also had way too much time together. 

The kids had been begging me to take them to the beach, so off to the beach we went.  The first fifteen minutes were fantastic like the scene from a movie where kids frolic and giggle with utter abandon.  At minute sixteen, everything fell apart.  The black flies started swarming and we all ended up with welts all over our bodies.  Staying in the water helped the fly situation, thankfully, but then there was the Great Beach Ball Incident of 2014.  You see, during the last few weeks of the school year,  Lottie won a prize package for something at school, and one of the things was an FLE beach ball.  She was terribly excited to play with the beach ball at the actual beach, and both kids had fun watching the ball bob on the waves.  (You know where this is going, right?)  At one point, the wind blew the ball into the water before anyone could grab it, and it started to float away.  I heard Dallas yell, and I took off after the ball.  Lake Michigan isn't exactly warm, and I was a bit worried about hypothermia as I chased a plastic ball deeper into the water.  After a few minutes, I realized I was never going to catch up to it, and I trudged back to the shore.  Imagine my shock when I found both kids crying - SOBBING - because the 99 cent piece of plastic was floating off into the great beyond.  I was so shocked at their reaction that I started to laugh, and that was not well received.  They cried harder and threw themselves on to the sand.  I promised them a new beach ball, but they didn't want a new one.  Lottie felt especially sentimental about that particular beach ball, and Dallas felt guilty that Lottie's special prize had been lost.  I tried telling them that the beach ball would have a great adventure out on the lake and maybe even be picked up by a passing ship.  Both kids looked at me like I was an escaped mental patient and continued to cry.  Just like that, the day at the beach was over.  We packed up our things and drove home.  I managed to keep up a happy, positive chatter on the way back to our house, but I noticed as I pulled into the driveway that the kids were still crying.  Incredulous, I said, "Seriously?  Is this still about the ball?"  Wrong question, Mom.  Because yes, it was still about the "you-know-what" that apparently we weren't allowed to discuss anymore.  That darn ball is like the Voldemort of our summer break. 

The rest of the week wasn't much better.  We saw a movie, played with friends, and hung out together.  A lot.  A lot of time together.  The kids played, the kids fought, the kids played, the kids fought, and then the kids fought some more.  In the meantime, T started his chemoradiation at Northwestern.  He is already feeling fatigued and nauseous from the treatments, and he's only three sessions in.  He started taking the anti-nausea medication prescribed to him by one of his doctors.  Unfortunately, he had a terrible reaction to that particular medication, and it ended up being more of a regurgitant than anything else.  He spent the entire Fourth of July vomiting and having chest and back pains.  He was out of it, I was terrified, and the kids could only think about fireworks.  'Merica.  He talked to a doctor at NMH on Saturday, and she prescribed a new med for him to try.  Fingers crossed that this one won't make the chemo seem like a walk in the park.

Thank goodness this week brings a return to some semblance of schedule for the kids and for me.  I think a little routine makes everyone feel a bit more secure.  The kids will be back to summer camp, ballet, and tae kwan do while T will start his first full week of treatments.  I'll be attempting to keep all the balls in the air at any given time.  Once again, I am grateful for my family and friends who have done so much for all of us.  I hope someday to be able to repay all of you individually for your kindness, concern, and help, but for now, please know how much we appreciate your love and support. 

Our eyes are on the prize, always on the prize. 

Of chemo and cupcakes

We're ending the last week chez Wells before T begins his treatments on Tuesday, July 1.  While I can't speak for T, although I guess I do by way of the blog, I'm feeling a huge rush of emotions while we wait for the chemo/radiation to begin.

I'm ready - MORE than ready- for T to start his treatments at Northwestern.  The sooner we can get this cancer on the run, the better.  This tumor is a constant cloud over everything we do, and I want it gone.  The sooner we can get started, the sooner we can be done.  I find myself trying to cram in every last activity, every last bit of fun we can before T won't feel like doing much.  Dallas has already told me that this summer hasn't been as fun as he thought it would be, so I guess I'm going overboard to try to make things REALLY SUPER FUN so the kids don't remember the summer of 2014 as the summer their dad was sick all the time.  I mean, we have told the kids as much as we think they should know about T's cancer and how it's all going to work, but in the end, they're just little kids who don't understand why we can't travel or go to the beach every day.

I'm relieved that the treatments are beginning because I'm tired of the constant waiting.  As there always is with many facets of life, we have gone through the hurry-up-and-wait phase of this cancer.  T has had test upon test, appointments with various doctors, and filled out enough paperwork to reach to the moon and back.  We're both ready for action because sitting around and waiting is making us crazy.  Although we only got the diagnosis a month ago, it tends to feel like six forevers.  I want to shake everyone and remind them that my husband has cancer, and we need to deal with it NOW.  I know that, unfortunately, he's just one of many cancer patients at NMH, but he's the most important one to me.

Along with the relief and eagerness to get started, there is the fear and the anxiety.  As a general rule, people tend to fear the unknown, and we're no different.  I have avoided researching anything about colorectal cancer because I know that cancer is really such an individual thing.  The way one person reacts to chemo and/or radiation is never exactly the same as how another person reacts.  While that's comforting to know in a way, it's also scary.  Will T be nauseous?  Will he lose his hair?  Will the fatigue drive him to bed at 6 PM every night?  Will he be safe going to and from Chicago every day for twenty-eight days? Will he get to spend any time with the kids?  Will I be able to handle everything while he is healing and recuperating? After all is said and done with the chemo, the radiation, the surgery, and the second round of chemo, will T still be the same?  Will anything ever be the same again?  Because cancer is so individual, there are no hard-and-fast answers to my questions.  I have my own gut feelings, but I have no absolutes.  I'm okay with that, but again, the unknown can be a big, dark place.  I honestly have no worries about the overall outcome: I know in my heart that T is going to be okay.  But sometimes my head and my heart clash, and the what-ifs try to overrule the happily ever after.

When I was explaining this all to T the other night, I didn't get a chance to tell him that I don't want or expect reassurances. It's not like I was kidding with that whole "in sickness and in health" vow. I know it's all going to be okay, but I need to express how overwhelming it all is.  It's like having a bad day at work or at school: Sometimes you just want to come home, get it off your chest without anyone trying to fix it, then eat a cupcake.   There are an infinite number of people who have it so much worse than we do, so I only want to unburden my roiling thoughts and move on.  People have asked why I write publicly about our lives, both the great times and the struggles.  Writing is my cupcake, plain and simple.  Some people play golf or run or actually eat cupcakes, but I write.  To paraphrase the great Lesley Gore, it's my blog, and I'll write what I want to. 

Moving forward

Here we are chez Wells, and we keep on keeping on.

Starting out with the good news: the PET scan T had to check a spot that was seen on his lung came out clean, so the cancer has not spread anywhere else.  It's always wonderful to have a ray of sunshine in the middle of a storm.  And my scan came back clear as well, so now I can focus all of my energy on getting my love healed.  

T and I met with his radiological oncologist yesterday at NMH.  He seems to be another fantastic doctor, very calm and informative.  The current plan is to get T going with chemotherapy and radiation before even thinking about surgery.  He'll have approximately twenty-eight days, Mondays through Fridays, of the chemo/radiation combo and then anywhere from a six to ten week healing time before surgery.  The doc said that the chemo/radiation combo pre-surgery has been shown to dramatically lessen the chance of recurrence post-surgery, and the wait time afterwards allows the combo to keep working its magic of shrinking the tumor and allows time to heal before the surgical oncologist gets a chance to do her thing.  My lucky guy gets to go back to NMH on Wednesday for another colonoscopy and then again Thursday for another CT scan to determine exactly where to aim the radiation.  Scans and tests and contrast IVs, oh my!  We don't have an official start date yet for the chemo/radiation treatments, but we're hoping to know more after Thursday's appointment.  We both got the impression from the doc that he hopes to start within the next two weeks, so we're keeping our fingers crossed for sooner rather than later.

Admittedly, it will be inconvenient to drive into Chicago every weekday for approximately six weeks, but the benefits far outweigh the hindrances.  We trust the doctors at NMH and love the way they all communicate with each other. People in Valpo drive to Chicago for work every day, so doing what we need to do for a finite amount of time is no big deal.  And truth be told, I sort of love being "stuck" in a car with T during the drive because it's more time we get to spend together that we wouldn't have in a normal work day.  Sometimes our conversations run to the deep, but mostly we find things to laugh about.  Heaven knows we need a lot to laugh about lately. 

It's looking like chemo/radiation throughout the summer with surgery sometime in the fall.  T and I did our best to explain all of this to the kids last night.  We had done a bit of explaining earlier on, but we also knew we had to go a bit deeper.  We're telling them as much as we can without scaring them, but I think everything unknown is scary to five and seven year old kids.  There has been so much upheaval already this summer, and we're in for a whole lot more. They need a schedule and some normalcy, and unfortunately, I can't guarantee any of that right now.  This parenting thing is hard on a regular basis, but adding cancer into the mix makes it even harder.  I am more than confident that T is going to get through all of this, that we all will, but it's going to be a bumpy ride.  Once again, I am thankful for all of the love and support we have gotten from our family and our friends.  Keep praying, sending the mojo and juju, and just thinking good thoughts for us. 

Update

First of all, thank you SO much for all of the support we have received from all of you!  Trevor and I are truly overwhelmed with gratitude: We had no idea people liked us this much!  (Especially Trevor because sometimes he's a bit of a pill.)

Since I last wrote, T has been to a couple of appointments at Northwestern Memorial Hospital (NMH) with some great doctors.  We met with a surgical oncologist who put his cancer at a stage 3 and gave us some options.  She said she could either do surgery first and then chemo/radiation after or a round of chemo/radiation, surgery, and another round of chemo/radiation.  The next day, T was lucky enough to score an appointment with a medical oncologist at NMH with the same opinions as the surgeon.  The two doctors planned to present T's case at the next tumor conference next week to see what their colleagues think as well.  Doctors who seek opinions of others and voluntarily share information and experiences?  Ah-MAY-zing as we tend not to see that too often around here.  In the meantime, T is having another colonoscopy, another CT scan, and an MRI.  I love that both doctors were very positive and ready to get going on whatever needs to happen.  The waiting and inactivity are driving me CRAZY because I need to do something or I'm not making the situation any better, you know?  (By the way, who else is picturing a tumor conference as a bunch of tumors sitting around a conference table with their Androids and iPhones?  My friend Kristin says the tumors will all attack the free food at happy hour then ask where the nearest Hooters is.  Classic!)

Apparently there are pros and cons to each option, and the docs are going to weigh those during the conference.  I felt like the first doc was very genuine in her opinion that either option would be viable and they would make what they felt was the best decision in this individual case.  That's exactly why I have forbidden T to look up any statistics and studies about stage 3 colorectal cancer: each case is specific to an individual just like his case is only about his cancer and his treatment.  I threatened to cut the cable line so he wouldn't have access to the Internet. but when he shuts himself up in his office to work, I have no idea what he's looking at.  Coincidentally, we did lose Internet service for a couple of days last weekend, so score for T not being able to torture himself with random numbers!!

I wasn't able to meet the second doc because I was receiving my Radioactive Iodine (RAI) treatment that morning.  My dad went with T as a second set of ears, and I'm pretty sure we passed each other in the NMH parking garage as I was leaving and they were arriving.  I have been in Isolation 2: The Revenge from Wednesday when I got home at 12:30 PM until this coming Thursday.  I'm on day two, and I feel like I want to scream.  I miss my kids, I miss my husband, I miss the rest of my family, and I miss my friends.  I mean, FaceTime, texting, email, and the phone all are fine, but there is nothing like real contact with the people I love.  But I'm keeping my eye on the prize of getting healthy without
harming anyone else.

So, we have seen some forward motion, and I think that has been a great help to us both.  We have no idea what the new few weeks or months will bring.  Of course, no one really knows that, do they?  But we do know we have each other, and that's all that  matters.

Thank you again for all the emails, calls, and texts.  We treasure all of your thoughts!

Lightning does strike twice

Last week, I accompanied Trevor to a fairly routine colonoscopy.  The poor guy had to drive back from Lexington the day before with only cold beef broth as sustenance and spend the next twenty-four hours chugging a mix of Gatorade® and Miralax®.  Needless to say, he was a touch hangry by the time we went to his afternoon appointment. 

All went well, and I had a grand time talking to him as he was coming out from the anaesthesia.  His voice modulation was a bit off, so everything he said was very loud and very hilarious  He fretted about what to wear to our family picture over the weekend and mentioned that he had given the doctor advice during the procedure due his own Juris Doctorate background.  We were still laughing when the young doctor came in to talk to us.  Maybe I'm just an old Meemaw, but this guy looked like he was twelve years old, thirteen on a good day.  He had one small earring in one ear that sparkled each time he moved.  After asking how Trevor was feeling, the doctor assumed a sober expression to tell us that he had found a mass, a rather large mass, during the colonoscopy.  He had taken a sample to send to the pathologist, but he knew right then and there that it was cancer.

Trevor was still hazy, so I tried my best to focus and listen to what this doctor was trying to tell us.  I found myself instead watching his earring as it lazily shone under the fluorescent lighting in the recovery room.  What?  I thought.  This kid with jewelry can't come in here and tell me that my husband has cancer.  He just can't.  No.  But he did.  And Trevor does. 

Things started to alternately speed up and slow down in my mind.  I was shaking and foggy yet all too aware that this was actually happening.  We were both in shock and sort of weakly laughing at the time because the news was beyond unreal and ridiculous.  With the long weekend coming up, there was nothing to do but wait and think.  We had to stop ourselves from googling symptoms and treatments and statistics.  We had to be as normal as we could in front of the kids, but inside, we were both cold and numb.  As Tom Petty likes to remind us, the waiting is the hardest part.  Having no course of action until we could get in touch with various offices and doctors made me feel completely helpless and angry. 

Today will finally bring something so we can begin the process of finding out how to treat this interloper and get it out of our lives.  I need SOMETHING to happen because nothing happening is just not cutting it for me.  Trevor will have a CT scan here in town to determine whether or not the cancer has spread.  We'll then take all of the information we have to Northwestern next week and meet with a surgical oncologist to see what our next step is.  Luckily his appointment is the day before I begin Radiation Isolation 2: Electric Boogaloo so I can go with him for support and information-gathering.  What I know right now is that the next few months are going to be full of serious suckage, and there is no way around that. 

One adult in a family going through cancer treatment is enough, but two adults going through it at the same time is breathtakingly frightening.  I know I have to stay positive for Trevor and the kids but for myself as well.  Now is not the time to fall apart or fall prey to the thousands of what-ifs that go through my mind every day.  It's going to be okay because it HAS to be okay: it's really that simple.  I'm a pretty dyed-in-the-wool atheist, but any prayers, good thoughts, positive juju, or strong mojo would be most appreciated. 

Scent memories

I bought a pack of gum at Family Express the other day.  I opened a piece, and then I was eight.

The smell of spearmint took me to Independence Hill in Merrillville where my grandparents lived.
Pop asking me, "You want a cake of gum?"
My grandma coasting down the big hill in the car.
In retrospect, the hill was pretty small.
Summer nights on the screened porch.  Crickets.
Spending the night.
Watching "The Love Boat" and "Fantasy Island."
Eating Neapolitan ice cream and Little Debbie snack cakes.
Satin pillowcase under my head.
Baseball game softly playing on the radio.
Chenille bedspread.
Grandma's fried chicken.
Iced tea so sweet it made my teeth hurt.
Pop reminding me that he never left Green County until he was sixteen years old.
Small house, so cozy.
Trips to Dairy Queen.
Picking tomatoes out of the garden and eating them like apples.
Big circles on the riding lawnmower.
The green candle on the living room table that was never burned, not once.
Running to the neighbor's house because she always had candy bars in the freezer for us.
Grandma's wash and set.
Pop pronouncing my name with the emphasis on the second syllable, the right way.
Always ready for the next visit and the next.
Feeling safe and loved.


And then I was forty-one and wished I had one more night.

Perchance to dream

Not long ago, Lottie's school celebrated something called The Week of the Young Child.  (My cynical thought was that EVERY week is the week of the young child, is it not?)  During one of the days, she had to dress up as the profession she wants to pursue as an adult.  Lottie picked to dress like a princess, and I wouldn't let her.  Ouch.

Let me rewind a bit by saying that I didn't say no because I hate pink or princesses or stereotypical girlie things.  I revel in being a girlie-girl, and I have no issue with Lottie loving it as well.  She has oodles of frothy and frilly dress-up clothes, she loves to borrow my jewelry, and playing with makeup is one of the highlights of her week.  But she also loves to go outside and get filthy dirty, climb trees, roughhouse, and play anything related to Teenage Mutant Ninja Turtles.  She's a pretty balanced kid, and I think that's fantastic.  If she chose to wear fuchsia and glitter and lace every day for the rest of her life, I would be happy if it made her happy.

But when she told me she wanted dress like a princess for first grade career day, for some reason I told her she couldn't.  I went off on a bit of a rant about it wasn't realistic for her to want to be a princess when she grew up and she needed to give her outfit a little more thought.  We finally agreed on her future career as a rock star, and we picked her ensemble out together.  As I left her bedroom that night, she said in her little chipmunk voice, "I can't believe my own mother doesn't even believe in my dreams."  Serious ouch.

I laughed off the comment at the moment, but the next day, I started to feel squinky about my decision. Lottie happily bopped off to school dressed as the next Katy Perry, but I still felt uncomfortable about the fact that I had said no to her growing up to be Princess Charlotte.  Logically, I guess it's an unrealistic dream for her, but not all dreams are logical choices.  The bigger the dream, the more likely it is that people will try to squash it.  Steven Spielberg dropped out of high school and was later denied admittance to a traditional film making school.  I'd say that worked out pretty well for him.  Twila Tharp was rejected time after time by dance companies until she decided to open her own troupe.  100 choreographed shows later, she proved her naysayers wrong.  Grace Kelly didn't get into Bennington College due to her low math scores, so she pursued her dream to act and became quite good at it.  And, oh yeah, she also became a PRINCESS.  Kate Middleton, anyone?   Walt Disney created an empire because he dreamed of creating ways to entertain families.  Thomas Edison dreamed of a brighter future, and he made it happen.

I slowly realized that no matter what my kids dream about doing, one of my jobs is to support them.  I don't know where those dreams will go or how they will end up.  I don't know everything that my kids are capable of achieving, but I have great hopes.  They're going to run into disappointments and roadblocks in life, no matter what their goals are, but the key is learning how to deal with what might stand in their way.  So instead of constantly telling them what they can't do, I think I need to start showing them what they can do and going from there.  Maybe Lottie will never be a real princess when she grows up, but that's ultimately for her to figure out on her own, not for me to crush.  I hope she doesn't ever lose her starry-eyed "what ifs" because if she does, that's when I have truly failed.

Credit: http://quotes.wishbowl.org