Update

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

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

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

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

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

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

Lightning does strike twice

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

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

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

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

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

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

Scent memories

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

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


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

Perchance to dream

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

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

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

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

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

Credit: http://quotes.wishbowl.org

Life is but a dream

“We sometimes congratulate ourselves at the moment of waking from a troubled dream; it may be so the moment after death.”
 Nathaniel Hawthorne 

Death is a scary concept.  No one knows exactly what happens to us after death, and the unknown can be terribly frightening.  But we all have our ideas, our hopes, or our faith about what happens after death.  These thoughts are usually kept in a far corner of our minds and only pulled out when needed, but perhaps if these thoughts were shared or brought out in the sunlight more often, death wouldn't be so scary.  

Last week, I lost my eldest cousin, Lynn.  Lynn was a person who inspired others.  She was a yoga instructor for twenty years, and she poured her passion into teaching and nurturing others.  When we were children, Lynn was the eldest of the six cousins, three boys and three girls, our leader and the one who paved the way.  I used to spend hours watching her, playing with the dolls she had grown out of, and so wishing I could grow up to be like her.  She was wicked smart and had a funny sense of humor.  The three female cousins used to go shopping with our grandma for our November birthdays; we were all born in different years but within a week of each other.  I would watch as the older girls picked out clothes that were fashionable and beautiful, and I couldn't wait to be able to wear what they were wearing.  But despite our age difference, Lynn never treated me like anything but an equal.  She came to the very first Thanksgiving I hosted by myself and made me feel at ease when I was freaking out.  We didn't get to see each other much as adults, but we always communicated during the November birthday week.  It's hard to grasp that the three girls have become two in the blink of an eye.


It's always terribly difficult for those of us who are left behind.  We ache for the person we have lost.  Sharin, Lynn's sister, and I talked about that first moment of wakefulness in the morning, the sweet moment where the fabulous start of a new day has begun.  Then in the next moment, you remember.  You remember what you have lost, and the ache starts all over again.  I don't know how to make that go away.  I don't know how to soothe that pain and that sadness.  I have no idea how to make a family complete again.  There is so much I don't know, but there are some things I know for certain.  

I know in my heart that Lynn has gone on.  Trying to put into words how I feel about it all has been difficult.  Perhaps, as Hawthorne wrote, death is like waking up after a dream, a good or a bad dream.  It's the reward for what we went through in life.  When the kids ask me questions about what happens after people die, I feel comfortable telling them what I believe.  I believe, simply, that we are happy.  We are in a place that makes us happy, be it on a beach or in the mountains or at home. We are healthy and laughing and full of joy.  We can watch the sunrise and the sunset with no fatigue and nothing to distract us.  The best part is that we are with the people and animals that we love.  I believe that there is no such thing as the passage of time, so as people on Earth join us, it's like they have always been with us.  We all fit into each other's lives perfectly and with utter joy.  There is no pain, no sadness, no tragedy, and no misery.  Things are simple, peaceful, and the epitome of beauty.  That's exactly what I believe and exactly what I told my children.  The more I think about it and talk to them about it, the more at peace I feel.  And maybe that's all we can do as those left behind: we can try to feel better and be at peace.  

Namaste, Lynnie.  Give Grandpa and Grandma hugs from all of us, and may you forever have your sunsets.  

Double or nothing

What a week.  My little Ford Flex drove into the city and back four times.  Thanks to Mother Nature, Wednesday's trip was a little more difficult than the other days.  It took us over three hours to get to Northwestern due to icy roads and a few jack-knifed trucks.  That was the day of the actual RAI dose, and I wasn't allowed to eat before I drank it or for two hours afterward.  Thank goodness Trevor is a patient man because I am certain I wasn't super peachy to be around.

Fast forward to Friday.  I drove back into Northwestern for my WBS, whole body scan for all of you non-medical people.  I'm pretty sure I have an honorary degree in endocrinology at this point, so I know what's what.  The scan itself was easy: I got to change into gorgeous hospital clothes, including some lovely non-slip socks, and lie down on a table for ninety minutes.  I had a blanket that came straight from a warmer, and the technician tucked the blanket in all around my arms.  I was like a snugly warm burrito, and I'm pretty sure I fell asleep, even with a large machine one inch from my face.

I imagine I looked something like this.
(Credit: distractify.com)

I felt very light and free driving home that day because I had made it through the worst of the week.  That feeling went away as soon as I got a phone call from my endocrinologist.  I wasn't even home yet, so I didn't think it was a good sign.  I mean, she's not the kind of gal to just call to say hi, you know?  Apparently, the WBS had gone well.  Score!  However, some rogue thyroid cells showed up.  Boo!  There is no way to determine if these cells are cancerous or not, so we have to get rid of them.  You may be asking yourself how this will happen.   I get to do the RAI once again!  Double down, baby!    Next time, the dose will be a full treatment dose instead of a small test dose.  Once again, I'll get to hum some Imagine Dragons to myself.  Get it, y'all?  "Radioactive, radioactive..." Good stuff.

Anyhoo, that's the scoop.  The first week of June, I'll do the whole injection/RAI/WBS dance again.  I also get to do a low-iodine diet for a month before the next RAI as well as going off my Synthroid.  The idea is to starve my cells of iodine so they gobble up all the RAI that will consequently take them all out.  There's something really creepy about that if you stop to think about it.  If you had any plans to stop by to say hi, I would say to avoid most of May and the beginning of June.  I'll be tired from the lack of meds and glowing after the RAI.

(Credit: loyarburok.com)

Despite being terribly lonely for my family this week, it hasn't been all bad.  I have done a lot of reading and even gotten some organizing done.  Quite frankly, I'm humbled by all of the kind thoughts people have sent to me, and the kind things people have done for me.  I thank you all so much for thinking of me!  Lots of thanks have to go out to my parents for hosting 75% of the Wellses overnight as well as keeping them fed, entertained, and out of trouble.  Mostly.  Trevor has been incredibly supportive and patient, even sharing a twin bed with Dallas one night.  But I'm counting the minutes until tomorrow afternoon when I can hug my family members again.  I need, NEED, some super snuggle time, and I need it soon.

Just because I miss them and they're so stinkin' cute.

All in all, it wasn't the news I was hoping for, but I'm not discouraged.  I'm über-confident that we can hunt down and kill all the straggler-cells that have felt the need to stick around.  Too violent?  Nah, just perfect, I think.  Sorry, thyroid cells, but you're not welcome anymore.  Be gone!  Good day, cells.  I said good day!

Call it what you will

Until recently, I didn't know that quarantine and isolation had two different meanings.  Quarantine is separating healthy people who have been exposed to a disease to see if they become ill, and isolation is keeping sick people away from others so no one else becomes ill.  Fascinating!

Isolation, solitude, sequestration, seclusion...no matter what you call it, it's happening next week.  As of Wednesday, I am going into isolation after getting a test dose of radioactive iodine (RAI) at Northwestern.  As Lottie would say, don't freak out before I finish my sentence.  Nothing is wrong, but this is a follow-up test as I reach the second anniversary of my thyroid cancer diagnosis.  The RAI is used to see if any thyroid cells survived the total thyroidectomy; if there are any still around, we have to get rid of them so the cancer doesn't return and/or possibly spread.  No biggie, I promise.

I foolishly picked an endocrinologist in Chicago (although can you really blame me?) and so I get to put plenty of miles on my car next week driving to and from the city.  I visit my doc Monday and Tuesday mornings for injections of Thyrogen, a drug that basically makes me hypothyroid without having to skip weeks and weeks of my Synthroid.  Score!  I'm always exhausted and achy as it is, so can you imagine how I would be sans thyroid meds?  It's probably best not to think about it.  The downside to the Thyrogen is the crazy price tag.  Let's just say when the Humana representative told me how much of a co-pay I had to pony up, I found myself wishing I had a Victorian fainting couch and some smelling salts.

Me without meds
(Credit thebabycupcakes.blogspot.com)

 So that brings us to Wednesday.  I have to start fasting Tuesday night at midnight; considering I got to bed around 9 most nights, that shouldn't be an issue. Then, Wednesday morning, I go to the nuclear medicine division of Northwestern Hospital to get my very small dose of radiation.  After I drink that cup of loveliness, I have to come straight home so I don't infect anyone else, and I still have to fast for two more hours after that. Me without food is maybe worse than me without meds.  I return to Northwestern Friday morning for a full-body scan that will take approximately ninety minutes.  And thus ends my visits to the big city for the week.

Due to my radioactive status, I have to go into an isolation of sorts.  I can't be around the kids from Wednesday through Sunday, and I can't be around any adults for 48 hours.  Trevor and the kidlets are going to be spending quality time at my parents' house while I fly the yellow flag from home.  I wish Godspeed to them all.  Although I often find myself longing for time alone where I'm not interrupted every six seconds by the call of "MOOOOOOOOOOOMMMMMMMM," I am going to miss all of their faces so, so much.  I have mad love for the minion at Apple who invented FaceTime so I can at least give virtual kisses goodnight.

I have been selfishly and greedily hoarding books and magazines to keep me company during what I call The Incarceration.  I have loaded up my Kindle with cheap titles that I found on BookBub, and I have a certain series on Netflix that I am dying to finish.  I have grand plans to organize the storage area of our basement as well, but the books and the general sloth sound far more appealing.  However, I guarantee that I will not feel good about sitting around the house like a bump on a pickle, so it may be the perfect time for spring cleaning to begin.  Visions of uncluttered surfaces run rampant through my head...

(Credit: crappypictures.com)

Basically, this is just a heads-up for all y'all in the Region.  If you see me out and about on Monday, March 17, and I'm glowing or more frantic than usual, you can blame it on the radiation and The Incarceration.  However, if I'm looking suspiciously like the Incredible Hulk or Spider-Girl, back away slowly and do NOT make eye contact.  Maybe that's how you escape wolves and not superheroes, though.  In any case, I have a feeling it'll be a very happy wearin'-o'-the-green for me this year.