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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. 

Friday, June 6, 2014

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!

Wednesday, May 28, 2014

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.