Now what?

In the last three months, T has finished his cancer treatments.  He had a final surgery to reconnect his bowel system, and he was able to 86 the colostomy bag that he had been carrying around for seven months.  The ileostomy take-down surgery has a long recovery period, very long, but T has already seen improvement since the procedure in May.  (If any of you are singing Bob Seger in your head right now, bonus points to you.) 

We spent so much time waiting for the next steps during all of the treatments, and now we are finally at the point where all there will be are follow-up appointments.  It's a wonderful, amazing feeling to finally be able to relax after fourteen months of never taking a deep breath.  The last year has been so chock full of tests and appointments and surgeries; now we're looking at only four appointments a year.  

So...now what?

We're planning a trip to Hawaii in the Fall to celebrate the demise of the cancer and to belatedly celebrate our tenth wedding anniversary.  Yes, we're taking the kids with us because they deserve a vacation as much as we do, and we also invited my dad to join us as well.  We went through the ordeal as a family, and I want us to unwind as a family.

I'm starting a new part-time job at the beginning of the school year.  I'll be working as a University Supervisor through Purdue University; basically, I'm going to help student teachers learn how to be the best teachers they can be.  I honestly never expected to go back out into the working world in any way, shape, or form.  I have always been fulfilled by what I do at home, and I have never felt the need to prove anything, to myself or others, about my value as a homemaker and mother.  But this opportunity fell into my lap, and after initial resistance, I decided to grab it.  I can basically make my own schedule, and the majority of my work can happen while the kids are in school.  

The timing was right to start doing something new.  I thought I would be ready for business as usual once all of T's treatments were over, but I have found that I'm ready for change instead.  People have asked what I have learned throughout this whole journey, and I don't know that I have one simple answer for that.  I think, though, that I have started thinking more in terms of why not instead of why. "Change is good" has always been one of my mottos (although it makes T shudder) but it's not exactly change that appeals to me now as much as it is taking advantage of opportunities, no matter how big or how small.  

It's not as dramatic as deciding to live life to the fullest, grab the brass ring, etc.   I wish I could say that the last few years of cancer hullabaloo have made me appreciate every moment in life that I have, but I think that's a pretty high expectation for one person.  I'm only human, and things are bound to get me down now and again.  But instead of wondering if I should do something, I want to start asking myself why wouldn't I do it: small things like giving the kids ice cream before dinner and letting them stay up late, big things like a new job and a dream of starting my own business someday, or in-between things like nights out with friends.  I don't want to look back and regret the things I didn't do, the places I didn't go, or the friends I didn't make because I was afraid or thought somehow I didn't deserve to do it.   

There is, of course, another side to this.  I also have to learn how to say no when I really don't want to do something.  That is going to be difficult because I don't like saying no or letting people down.  Like anything in life, there needs to be balance between what will make others happy and what will make me happy.  Right now, I don't know how that balance will fit into my new viewpoint, but I'm eager to see how it's all going to work out in the end.  The beauty of it all is that I have the power to choose and make my own decisions.  I don't have to be perfect, and I don't have to be everything to everyone at every moment.  

Now what?  Now we breathe in and out; we laugh and we cry; we travel and we enjoy nights at home; we go to soccer games and we host play dates; we do what we have to do and we do what we want to do; mostly, we live and love.  Beyond that, we'll just have to wait and see.  

Back in the (Spring) swing

I know February is a short month, but, man, it was loooooooong chez Wells.  We had some very minor bouts of sickness, and longer bouts of I don't even know what.  We're restless and edgy and unfocused.  Winter blues?  Utter fatigue?  The blahs?  Something has been going around; that's all I know.

Credit: cartoonstock.com

I think I need to get out of the "when" mindset.  Like we'll go on vacation when T's treatments are over or we'll try to sneak in a night alone when the kids are older.  I need to focus on now and everything that is happening in the present.  The sun was shining today, and that has made a huge difference for me.  I was in a funk with the rest of the crew here, and I just couldn't seem to snap out of it.  I'm not entirely certain that I am out of it, but at least for today, there was a tiny hint of Spring in the air.  Spring will bring more sunshine and singing birds and soft breezes and the end of chemo. (That sort of seems like a bit of a "when" but I'm going to let that one slide.  No one is perfect.)   Even when we don't feel like it, we keep on keeping' on, and sometimes that's enough.

This is not to say I haven't been finding the good in things as often as I can.  This is the Year of the Boss, no?  I'm beyond grateful for my amazing family who continues to help us out every day.  My dad takes T into Northwestern for his chemo days and takes Dal to tae kwon do.  My mom spends girl-time with Lottie after school and makes sure we are always fed.  My fantastic brother gave up a Friday night to take both kids to the Flint Lake fun fair because I was working the fair and couldn't walk around with them.  (No need to get into that night, but suffice it to say Dallas made Matt's chaperoning job a bit difficult.)  We are so lucky to have my family and our friends around to check in, lend a hand, or just remind us that they are around when we need them.  I love that my kids get to see not only what it looks like to help others but how to graciously receive the help being given.  That is a gift that they will use for the rest of their lives.

I have been going to boot camp at the Y with my brother on Monday and Wednesday mornings.   It's a great way to get going in the morning, and I secretly like the time I get to spend with Matt.  Don't tell him I said that, though.  I would hate for him to get the big head.

I spent time with the big family group a couple of weeks ago.  I loved sitting around and laughing with my cousins, and it was fun to watch our kids play together.

My wicked smart nephew has decided to head to IU next year, and my incredible niece is turning twenty-one this week.    That's bitterboss because they should both still be little, but watching them grow is a pretty special thing.

I ran into one of my former students a few weeks ago who said she hoped I would go back to teaching because I was really good at it.  Talk about the big head!!  My ego is still stuffed full after that.

Some people I know are getting married, and some people are having babies.  New seasons, new lives, new beginnings; there's not much better than that.  Maybe forcing myself to remember the boss that life doles out every day will help get me out of "when" and keep me in "wow."

Someone had fun at the fun fair!

Escapism

Quick update: T had his fourth chemo treatment this past Wednesday.  Thankfully, things are continuing to go well.  The nausea is very mild compared to what it was after the first treatment, and other than fatigue, he has been feeling okay.  We honestly don't know if he is going to have eight or nine treatments.  We're both going with nine so we can be pleasantly surprised if it turns out to be eight.


That in and of itself is enough to be happy about.  You might remember that I promised myself to find something boss about every day this year.  So far, so good.  I decided that you all probably didn't want to read about every single boss thing I discovered, so I'll pick out the bossest (bosstastic? bossaroni?) tidbits for the blog.

T and I don't get a lot of quality time alone together .  All parents of young kids know how that goes, but we also add chemo fatigue into that equation.  There are many times T goes to bed when the kids do, and I'm the only one awake in the 9's.  However, we're lucky because T works from home (BOSS) and we can spend some time together during the day.  Earlier this week, we had lunch together and settled in to watch a TV show while we ate.  When T was doing his first round of chemoradiation in the summer, he discovered that he could occasionally find Fantasy Island on one of the squadzillion cable channels we seem to get.  Talk about boss.  Fantasy Island reminds me of being a kid and watching the Love Boat/Fantasy Island combo every week.  It's deliciously cheesy and requires absolutely no rational thought.  I mean, who doesn't need an escape from reality every now and again?  And one word: Montalbán.

Credit: www.geni.com

So we started watching an episode where two kids wanted to get their parents back together after a divorce.  The two scamps lock their parents in a barn together all night in the rain to give them time to be alone and realize they still love one another.  If it sounds suspiciously like Parent Trap, it was, and it also starred Juliet Mills.  Ah, the Seventies.  The other part of the episode involved a woman, amnesia, a dead dog's grave, and voodoo.  The amnesiac was played by Lauren Tewes, Julie from Love Boat.  SO boss!  The rest of that storyline was pretty weird but brilliant in a Fantasy Island sort of way.  Two very different stories in one episode, and the two stories had very different weather in each.  On one side of the island, the voodoo practitioners lived in a sultry, tropical environment.  On the other side of the island, the kids sat beside a campfire with their parents, all shivering from the cold.

T: "That doesn't even make any sense.  How can it be tropical on the island at the same time the kids and their parents are freezing?"
Me:"It's a TV show."
T: "I know that, but wouldn't the weather be the same throughout the island?"
Me: "Babe, it's FANTASY Island.  Roarke can make anything happen."

This may seem like a ridiculous exchange to you, or if you're in a particularly harsh mood, simply stupid.  To me, the whole thing was boss because it was so completely normal for us.  Different people want different things out of life.  Some want action and excitement; some want romance and passion; some want travel and adventure.  Me?  I want normal.  For us, normal is doing very mundane things and laughing the entire time.  Having a silly conversation about the weather patterns on a television island is our normal.  It's my safe haven.  It's proof to me that we're still boss, cancer be damned.

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.

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. 

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.

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.

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. 

Luck

I read this article today about a woman who pretended to have bladder cancer, and for her pains, she was given meals, cash, and even had her wedding paid for by friends and family.  She's not the only one who has pretended to be sick in order to gain from her lies.  One woman recently faked a cancer diagnosis, breast cancer no less, in order to get money for breast implants.  Uh huh.  Classy.  I feel sick and furious and sad that anyone would go to such lengths for money or attention.

I wouldn't wish cancer on anyone.  Anyone.  It's horrible and frightening and absolutely life-changing.  I can't pretend to know what it feels like to have to go through treatment after treatment in order to fight cancer: I was lucky.  Every doctor I saw and continue to see has said that if someone has to have cancer, thyroid cancer is the "best" kind to have because it's easily treatable.  After two surgeries, my cancer is gone...for now.  It could recur, but the chances of that happening are pretty slim.  There's that luck again.

Although I haven't had to have chemo or radiation treatments, I'm still affected by it all.  Days go by without a thought of what happened, but other days, I wonder why I got so lucky when others I know have had a terrible time dealing with illness.  I think about the fact that I lived with cancer invading my body, and I didn't even know it.  I think about the fact that it could have been so much worse, and for some reason, it simply wasn't.  Lucky.

But the thing is, it's never really over.  The cancer could return, and that's something I have to live with.  When I get a little tickle in my throat, I wonder if it's back.  When I am feeling particularly run-down, I wonder if it's back.  When I cough, I wonder if it's back.  The worry lives in me like a tiny fly, buzzing around my brain, my heart, my stomach.  I know it's there, and I don't know how to get rid of it so I can go back to the way things were before.  Of course, I can't.  I'll spend the rest of my life with the nagging thought that something could be slowly growing inside me, taking over my body without my knowledge and without my permission.

These people who have pretended to be sick should have to go and talk to parents who have lost their children to cancer.  They should have to talk to people who have watched their loved ones slowly waste away because of the cancer monster.  They should volunteer at a hospice center or a children's hospital, deliver meals to survivors, or drive patients to treatment.  They should talk to survivors who have to go back year after year, always hoping they hear that their cancer hasn't returned.  But the one thing they shouldn't do is have to deal with their own cancer diagnoses because no one ever should.  I did, and I was lucky.  But not everyone is.

Credit: http://livestrongandsore.com

Random doc a go-go

Last week, we headed back to Lexington for a few days.  Trevor had to work, and I had my next blood test to look forward to at the endocrinologist's office.  As I mentioned in a previous blog, my regular doc was out of town, so I was going to be seeing his partner.  I had never met the guy before, and I was worried that he wouldn't take my symptoms seriously.

The nurse drew my blood, and I waited in the packed waiting room for over an hour while the lab was getting my results.  There was not one free seat available, so I never got up once for fear of losing my comfy plastic chair.  I had my Kindle to keep me company, but I think I did a lot more people-watching and eavesdropping than reading.  I'm only human.

As soon as I was called in to see the doc, I could feel my heart start to race.  What if my levels were great and the exhaustion is from something else?  Worse, what if the exhaustion is all in my head?  Fortunately, sort of, my TSH levels were down significantly from my previous reading, but they were still no where near where they should be.  The doctor wants me between a 0.1 and a 0.2: I'm currently at a 22.  I was happy that the levels are dropping but frustrated that they're still so high.  The random doc said he would up my meds - again- and see if we could get the levels down.  I was a little taken aback because everyone who knows anything about thyroid meds is surprised by how much I am taking.  I asked the doc if I was a total freak for needing such a high dose.  After he stopped laughing, he assured me that I was not a freak at all.  Apparently some people metabolize the meds quicker than others, and my body needs what it needs.  Whew.  I'm not a total head case.  Well, not for that.

The doc said he didn't need to see me again for six months, but that doesn't work for me.  I cannot and will not feel like this for six more months.  SIX months?  No way, no how.  I need my energy, I need to not be fat as Jabba the Hut, and I need some relief.  Word.  So I booked an appointment with a doc here in town so I could get the test done sooner.  Plus, even though I really like the practice down there, I don't want to do the six-plus hour drive every two months until this is all fixed.

The doc did an ultrasound while I was there to make certain that there had been no regrowth of my cancer since the surgery.  After making the obligatory "It's a boy!" joke, he said that the ultrasound was clear: no cancer.  Even though I'm still not feeling 100%, I was relieved to hear that I'm still cancer-free.

And so it begins...

I have been a little MIA in the blogosphere lately.  I have great ideas for blog posts, and when I sit down at night after the kids go to bed...I'm too tired to write.  The last few weeks, I have been getting back to normal (or as normal as I get) while my new thyroid meds start to kick in.  However, I don't really have the luxury of time to sit around while the meds do their magic due to The Move.

The Move is happening in eleven weeks and three days.  That may seem like plenty of time to get everything done, but I assure you, it is not.  I have to declutter and pack up a 4,400 square foot house while trying to manage taking care of the rest of my usual chores.  In addition to kid stuff, mowing, laundry, more kid stuff, and then some kid stuff, I'm keeping the house in "showing" condition and packing as much as humanly possible every day.  So far, things are going pretty well.  I have gotten rid of a lot of stuff - a LOT - by donating it to a local church.  As an awesome bonus, Fausto, who has done  house painting work for us in the past, comes and picks everything up from us.  Score!  The trick is to get rid of things while the kids are at school or otherwise occupied.  If they're around, every single thing I try to put in the donation box becomes the VERY BEST TOY EVER IN THE WHOLE WIDE WORLD.  Quite frankly, I sort of have to pull the same shenanigans with Trevor.  I found a box of files that had some of his old phone records and random bills from when he was in law school.  Uh huh.  I'm really glad he moved those from house to house without ever opening the box.  So, bye-bye bills.  Bye-bye college textbooks.  Bye-bye gross, sweat-stained baseball hats.  (And you just know he's going to read this now and immediately begin to squirrel things away.  Here's a tip for you, T: you had better start bolting things down because Mama's going scorched earth and there's nowhere to hide.)

It's not just that it costs about a billion dollars per pound for a long-distance move.  I mean, that's a huge factor, but it's more that I am ready to live a simpler life.  I want less...stuff.  Less stuff to clean, to care for, to worry about, to move, and to contain.  I want to spend more time with my family and the people I love.  I want to spend more time doing what I love to do and enjoying each day as it comes.  I'm always going to have the memories associated with the things even if I don't have the things, you know?  If the whole cancer brouhaha taught me anything, it's that being happy doesn't come from having things; it comes from appreciating all of the intangibles in life.  Peace comes from forgiving, starting over, and moving on; it doesn't come from holding on to what you don't need.  Don't get me wrong: I still have stuff but I think a lot less of it will help me focus on what's really valuable in my life.

Sweet relief

The surgery on Thursday went well.  I spent another lovely night at Central Baptist Hospital.  Don't get me wrong: the people are really nice there, but I quickly grew weary of being woken up every three hours, sleeping with an oxygen mask on, and being fed orange Jello and beef broth.  I got to go home pretty early on Friday morning, and as if the whole ordeal hadn't been bizarre enough, leaving the hospital was even more bizarre.  The nurse refused to unhook me from the IV until I ate solid food, but she wouldn't give me any solid food.  She also insisted that I sleep in the oxygen mask even though my oxygen sats were fine.  After the shift change, I got a new nurse who was on duty when I was discharged.  She and the student nurse who was shadowing her unhooked me from everything, and then the nurse proceeded to tell me that when my ride arrived, I could go ahead and just leave.  All I had to do was wave to the nurses at the nurses' station and tell them I was leaving.  By myself.  On my own two legs.  Without a wheelchair.  I mean, I was perfectly capable of walking to the elevator and to the front door alone, but I found it odd that the nurse would let me go alone due to liability.  As I was walking down the hall to leave, a staff member stopped me and said, "What are you doing?  Does your nurse know you're walking down the hallway?"  When I told her that my nurse not only knew but TOLD me to do it, the woman just shook her head and said, "Okay, good luck."

I was so glad to have Nicole, my parents, and Trevor's parents in town to help me with the kids.  I was able to take a nap (if you count four hours as a nap) on Friday and another nap on Saturday.  Lovely!  Trevor stayed home with me on Friday just to make sure everything was okay.  Either that or he wanted to nap, too, so he could stay up for the UK basketball game Friday night.  Other than fatigue, I have been feeling pretty good and slathering my sweet scar with vitamin E oil as often as I can.

On Monday, I had my first appointment with my endocrinologist, Dr. Wendell Miers.  (He is really cool, by the way.)  He was able to get into the CBH computer and see my biopsy results from Thursday.  Drum roll, please...

There was NO cancer in the second lobe that was removed.  Not only was there that amazing news, but I also don't have to do the radioactive iodine treatment.  Dr. Miers started me on Synthroid to regulate the level of thyroid hormone in my body, and I will continue to do checkups with him every three months, then every six, and eventually once a year.

I knew in my heart that everything was going to be okay, but hearing the news for sure was a huge relief.  All I wanted to do was go home and sleep for twelve hours because I felt completely weightless for the first time in a long time.  I didn't get to do that, of course, but last night's sleep was one of the best I have had in a long, long, long time.

I truly appreciate all of the thoughts, prayers, and kind words that you have all sent my way.  I know that every bit of love has helped me and my family get through this rough, insane, and emotional time.  Thank you all!

Now that I am cancer-free, I can get to the business of packing up the house.  But that's a whole other blog...

The Blight

Last Friday afternoon, I got a phone call from Amy, my surgeon's assistant, with the results of the biopsy.  The conversation only lasted a few minutes, and I really only heard one word: cancer.

I spent the rest of that afternoon in a sort of fugue state.  My mind sort of went all blank and fuzzy; it wasn't entirely unpleasant, to tell you the truth.  Amy had assured me that the doctor got all of the cancer when he removed the left lobe of the thyroid and that I shouldn't worry.  Uh huh.  Thanks, Amy.  I had so many questions, but I knew I had to wait until my follow-up appointment on Thursday to get answers from my doctor.  I didn't think about it too much the rest of the weekend because we were busy and I didn't see the point in worrying.  After all, the cancer was gone, and considering I didn't find out about it until after the fact, there was no point in getting all worked up about it.

That worked pretty well until today.  My surgeon called this afternoon, and as soon as I heard him identify himself, I knew something was up.  My appointment with him was in less than 48 hours: why call me now?  He said that the pathology report showed signs of capsular invasion, and he said the other lobe of my thyroid needs to come out.  Soon.  The good news is that there is no sign of the cancer in my lymph nodes, so hopefully the removal of the rest of the thyroid will make certain that never happens.

The woozy feeling returned; again, it wasn't a bad feeling.  There may have been a teeny bit of denial thrown in for good measure.  As I made the kids dinner, I thought, "Huh.  I have cancer."  Although I know it's real, it doesn't seem real quite yet.  In fact, it seems downright surreal that in a couple of weeks, I'll go back to the same hospital to have the same incision opened and wake up in the same recovery room.  As much as I don't want to go through it all again, I know that I don't have a choice.  I need to get this out of my body and start healing.

The doctor wanted to do the surgery next week, but he agreed to wait two weeks so I could go on a planned trip out of town.  I made sure that waiting won't jeopardize my health in any way, and I'll reconfirm that on Thursday.  I need this trip, though.  I'm going to visit my BFF in Colorado for a few days of fun, visiting with friends, Chinese food, trashy TV, shopping, more Chinese food, a stay at the famed Stanley Hotel, and a lot of laughing.

The Stanley Hotel where Stephen King got the inspiration to write _The Shining_.  Squeeeee!!!

I'm really not too freaked out, all in all.  I have faith that everything is going to turn out just fine.  And I can't let this consume me, my family, and my life.  Plus, my badass scar will be even more badass the second time around.  I didn't think I could get much cooler than I already am, but apparently, I can.  And I will.