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.

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. 

The things no one tells us

I have been a parent for seven years, eleven days, and a few hours.  The longer I walk down this parenting path, the more I realize that there are a lot of things no one warned me about before I became a mom.  I mean, I don't blame y'all for keeping your lips sealed, but holy cannoli.  Some of this stuff is getting really hard, really fast.

Dallas has been having some sleep issues lately.  Those sleep issues bleed into behavior issues which ooze back into sleep issues.  See what I'm saying?  Ever since mid-October, Dallas has decided that he doesn't want to be alone.  Ever.  He doesn't want to play alone in his room or run down to the basement to get a toy or sleep alone.  He has always been a kid who enjoyed time alone to decompress, but for the last few months, I can't be more than ten feet away from the boy before he starts to panic.  I have NO earthly idea how this started or where it is coming from.  We have the same nighttime routine we have always had - no shake-ups or surprises - but the routine doesn't seem to be cutting it anymore.  He wants someone nearby while he falls asleep.  Scratch that: he wants ME next to him in bed while he falls asleep.  When I give him snuggle time before he goes to bed, he cuddles under the blanket next to me and says, "Now this is what I'm talking about," while he sighs contentedly.  It's literally the only time of the day when he is fully and completely relaxed.  He doesn't want to feel this way.  I mean, who would want to spend his life being tired and mad?  He's a happy, sweet kid when he is a well-rested kid.

Now, I know you all are rolling your eyes and thinking that the kid has me snowed, that he's doing it all for attention.  This ain't my first rodeo, and I know when I'm being snowed.  When it comes to snowing Mama, Dal is the Sahara.  Whatever is going on is terrifying and absolutely real to him.  I can't dismiss what he's feeling, but it sure would be fabulous to figure out why he's feeling this way.  We have tried a menu of things to help him feel better at night: soft music, plenty of snuggle time, lots of reassurance, leaving a lamp on, and even giving him audiobooks on an iPod to try to quiet his mind.  Is any of it working?  Not so much.

Because he isn't sleeping well, he's a bit of a grump during the day, especially as it gets later into the afternoon.  The bedtime ritual is strained because he's grumpy and tired, so he's going into sleep in a bad mood.  VICIOUS CYCLE, y'all.  Vicious.  It's hard on everyone because he isn't kind to any of us, and it's hard on him because being mean is really not who Dallas is.  He's a sweet kid who likes to keep the peace, but he can't do that when his brain is a grey fog of fatigue.  I try everything I can to smooth things over so we can all enjoy a good dinner and a quiet family evening together.  Nice, right?  Well, Lottie has started saying that all I do is pay attention to Dallas.  Her favorite new phrase is, "Little brothers get EVERYTHING!"  So, that's pleasant to hear.  I have been making a concerted effort to be equal in all of my attention to both kids, but there is only so much I can do.  I'm spreading myself pretty thin, y'all, and I am toeing the line of sanity.  And it didn't help that this happened on our FUN FAMILY TIME at the ice skating rink:

First time on ice skates plus falling on her face equals a sweet shiner. 

No one ever told me how guilty I would feel about my parenting.  I spend hours and hours and HOURS worrying about what the heck I'm doing to my kids.  Am I too strict?  Not strict enough?  Do I push them too hard?  Do I do too much for them?  Am I babying them?  Am I expecting too much from them?   What am I doing right?  What am I doing wrong?  Am I doing anything right?  When they were babies, I didn't worry this much.  I changed diapers, I nursed them, I swaddled them, and I put them down for naps.  Easy peasy.  No wonder women keep procreating: babies are awesomely easy compared to what comes later.

When I had kids, I knew I would love them deeply and intensely for the rest of my life, but I had no idea how much I would question every single move I made.  Being a parent has made me realize how utterly clueless I am and how helpless that makes me feel.  I guess I'm not the only parent who feels this way, so I'm in good company.  But to all of my readers who don't have kids yet, I give you a warning: do lots of smart things now to build your ego because once you have kids, you're going to become a drooling fool who knows absolutely nothing.  For real.  Don't say I didn't warn you.