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Saturday, August 16, 2014

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.

Friday, August 8, 2014

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.    

Sunday, July 27, 2014

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.

Thursday, July 17, 2014

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.

Sunday, July 6, 2014

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. 

Friday, June 27, 2014

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. 

Tuesday, June 17, 2014

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.