The Blue Blanket

It's October. That means it's Everything Awareness Month. Breast cancer ribbons and infant loss Facebook memes lurk around every corner. Everybody's got a meaningful car magnet and t-shirt and there are all kinds of fundraisers for all kinds of diseases and traumas that we're supposed to remember. And be aware of.

Truth be told, I can barely keep track of all the things that I've been diagnosed with. If we start adding in all the other things going on with other people, it's going to take more than a ribbon-shaped magnet on the car to make me properly Aware. A spreadsheet maybe. Or a really long scroll I can carry around in my purse. But I don't have a spreadsheet or a scroll. You know what I do have? I have a blue blanket.

Modeled here by a boy child

I got this blanket at TJ Maxx in June of 2005. It cost 19.99.

Given that I can't remember what I ate for breakfast, it's kind of impressive that I can remember the specifics of this blanket's acquisition. Except that it's not. Doss and I bought this blanket when I first found out I was pregnant. I was still in grad school and money was tight- so it was a big deal to pop twenty bucks on a blanket we didn't really need. But I was pregnant! And I really wanted this blue blanket to cuddle on the couch. And, one day, I'd lay the blanket on the floor and put this baby on it.

Except that never happened. That baby didn't make it. And I thought about throwing out the blue blanket. I mean, it was my pregnancy blanket- looking at it reminded me of losing the baby. But I really liked the blue color. And it had been relatively expensive. So the blanket stayed, hidden in a closet. And then I got pregnant again. I didn't touch the blue blanket the entire time I was pregnant, just in case. But once the boy was born, I finally got to see my baby on the pretty blue blanket.

That blanket saw a lot of baby time

And he grew up on it:

And then came the girl:

The back of the blanket is solid blue.

 And they grew up on the blanket together:

They became best friends on this blanket:

They learned to roll over and crawl on it:

It was just kind of always there. Just part of our home. And the kids have never known the blanket's story:

It was just kind of always there.

Then, it disappears from the pictures. It's not that the blanket went anywhere- it's that the kids got big enough to take pictures sitting places without something to sit on.

The blue blanket was still there, in our home while the kids learned to walk, read, and do tricks on their scooters. It was there while I had cancer and 37 other body parts removed. Through my depression and menopause.

I have a quilt made out of the kids' old baby clothes. It's called a Mother's Quilt. But this old blue striped blanket (that's not as blue as it used to be because it's been washed four billion times) is my real Mother's Quilt. These days, we sit on it at the girl's soccer games:

And so, this October, I choose to be Aware of this old, blue blanket. Because it's old but soft and I still like the way it looks. Because it's survived a whole lot of life but still has lots to offer. Because my kids have no idea what it's been through, and I hope they never do. There's not a t-shirt or ribbon for that. But there should be.

Real Life

  Sometimes, I tell people about my job.

 It's kind of hard to explain.

And when I try, sometimes people get confused. Because it sounds weird: I have a bakery, but you can't just stop by and buy a cupcake. It's open by appointment only. It's more of a cake studio than a traditional bakery, really. And I make cakes... mostly weird ones that light up or have swear words on them.

I'm a cake.

And there are these princesses... and other characters... that host parties and things at the bakery.

 So sometimes, there are five or six freshly washed princess wigs drying on the bakery porch.

Maybe my life sounds weird because it is weird.

I can't really offer a good explanation for this picture. Sorry.

I was telling someone about this stuff when they said, "You live in a fantasy world, don't you?" I thought this was the strangest notion. What in the ever-loving heck? Weren't you listening? I make light up cakes and set princess wigs and help kids build proton packs out of cake boxes and boards.

That's not... huh. OK, I can see how that would sound like I live in a fantasy world.

But I don't. Not really. And it makes sense if you think about it.

Yes, I can make you a tea party with the Mad Hatter or set you up with the opportunity to decorate cupcakes with your favorite princess. But that puts you in the fantasy world, not me. Actually, I'm the one who deals with that pesky thing called reality so that you don't have to.

I'm like... a reality liaison. I create the opportunity for people to abandon the real world for a little while. And, while the whimsy is spinning, I'm the one watching the clock, setting the wigs, preparing the food... it's a pretty neat gig.

But that's just my job. I have a pretty normal home life. There's a brown dog:

And a husband (11 years and counting!)

And then there are the kids.

I sometimes worry about their real life. I mean, they're growing up in an unusual environment.

But then again, they're growing up pretty great. I mean, they're learning to make and repair all kinds of things- from cakes to costumes. They're learning to clean all kinds of things, too! They help prep parties which gives them the chance to do things for others- the way the birthday boy or girl wants it done, not the way they would want it done.

It's a good thing.

In a way, helping set up parties and "supervising" the creation of cakes for others has empowered my kids to be who they are. They help other kids celebrate their love of Spiderman or Paw Patrol and then feel more at ease about celebrating what they like. This is how we found ourselves at Magic City Con this weekend with two little monsters dressed as Ash and Misty from Pokemon.

What, you may be wondering, does it look like when kids go to a con?

For the boy, it looks like Ash Ketchum trying to shoot stormtroopers.

For the girl, it looks like Misty chatting up Sailor Moon in the hallway.

Magic City Con was a pretty good distraction. See... Friday was cancer day at UAB. The doctor didn't feel anything weird in my neck exam (I HATE the neck exam) and my TSH and free T4 were fine. My thyroglobulin got sent to the lab on Friday. That means I'm in the 10-14 day waiting period for the results to come back. That's the test that lets us know if the cancer is back. Ten to fourteen days of waiting. It sucks. There's no other word for it.

Now the whimsy of MCC is over. Time to find more distractions while I wait...

Dear Parents of Kids Younger Than Mine

Dear Parents of Kids Younger Than Mine,

I know what you're thinking- because I used to think the same things. You look at my kids who are seven and eight and you think, "I'm not ready for my little one to be that old! It'll be terrible." They're so big, so independent... so many adult-like behaviors as they try on new words and actions that they pick up at school and from the Disney Channel. (Sidenote: Hey, Disney Channel? Can we get a show or two that doesn't feature kids with smart mouths? Please? My kids get enough of that at home.) I know what you're thinking: Older kids aren't as great as babies and toddlers. I used to think that, too. Boy was I wrong. Apparently, the parents of school-age kids knew some things and were holding out on me. I'll spill the secrets here.

What I wish I'd known about school age kids when I was worrying about my babies growing up:

1. The worry: They'll be too big for me to hold them in my arms.
The way it is: You'd be surprised how well my kids still fit in my arms. You'll be amazed at how it feels when they're big enough to hold you in theirs.

2. The worry: They won't need me anymore.
The way it is: True, they don't need you for as much of the mundane stuff. At seven and eight, my kids can get their own pajamas out and give themselves a bath or shower. Certainly potty training is long over. They get themselves up in the morning. They can fix their own breakfast so  Doss and I can sleep in on a Saturday morning. They're even pretty good at working the Keurig for us. BUT! That doesn't mean they don't need us. Actually, the things our kids need us for are more meaningful now. Friendship conversations and homework and board games. Their physical independence actually allows them to rely on us for more emotional guidance. The smiles and coos of a baby at bath time were great. But the heart-to-hearts in the car on the way to school are even better.

3. The worry: They'll say things in public that will embarrass me.
The way it is: Yep. Better learn to laugh at yourself now. This one's true. BUT! For every embarrassing thing your child says in public, there are at least a hundred meaningful, insightful, or charming things they say at home. The good outweighs the bad here- it's still worth teaching them to talk.

4. The worry: They're not going to like what I want them to like.
The way it is: Yep. Sometimes. But this isn't necessarily a bad thing. You're going to teach your kids all about the things you like- they'll be exposed to it through you. Why not let your kids expose you to something new you might actually enjoy? My son got me into Dr. Who; it's turned into one of my favorite shows. My daughter made me watch a Barbie show with her once- have you ever watched those things on Netflix? They are full of tongue-in-cheek humor. I actually rather enjoy watching them with her. Your kids can teach you more than just how to catch projectile vomit in your hand if you let them. (Oh, you haven't learned that one yet? You probably will.)

5. The worry: They're going to argue and talk back.
The way it is: Sometimes. They will argue with you the way you model disagreements to them. So choose your fighting words (and tone) carefully. This is where you mother will look at you knowingly and think about how what goes around comes around.
It's true you're the parent and the authority figure. And your kids should be respectful. But sometimes, they have insight into a situation that you don't have. Listen to them.

It's pretty great- but then, I'm biased because my kids are amazing people. It is a privilege to get to be a part of their childhood. Seriously, I have no idea how I got this lucky. But I promise, you parents of babies and toddlers: the school years are pretty great, too.

This Was Not Supposed to Happen

Welp. Two months after the World's Most Complicated Hysterectomy (except for the ones that were more complicated than mine) and here's what I know:

Menopause is not for wimps.

This show makes so much more sense now.

It's also not for me. I don't enjoy it. At all.

I thought, arrogantly, with all my surgical experience that I could bounce back from this surgery just like all the others. After all, this was supposed to be a quick, 45 minute laparoscopic procedure, a couple of hours in recovery, and home by dark. Except the 45 minute laparascopic procedure turned into a four hour abdominal surgery with two nights in the hospital. But still... I've had worse. I thought I could bounce back.

Oh. Oh, how wrong I was.

You see, unlike the simple but excruciating dead gall bladder or the whimsical breast reduction, the hysterectomy brought side effects. I was unceremoniously dumped into full menopause at the age of 37. I thought, arrogantly, that the thyroid cancer had prepared me for the effects of menopause. Hormonal imbalances, temperature swings, crazy moods-been there done that, right? I refused hormone replacement treatment because I thought I could handle it. Also because I don't need the increased cancer risk and because I already take enough pills every day.

Oh. Oh, how wrong I was.

I don't know what menopause is like for others. I only know what it is like for me. I don't care for it.

Some of it is interesting. In a way, menopause is like a fast, backwards pregnancy. It started with the post-partum depression, then went into nesting. Then mood swings and food cravings. I'm expecting the morning sickness any day now.

A very Benjamin Button pregnancy.

But that's not the bad part. Actually, there are two bad parts.

Hot flashes. No matter what the sitcoms have told you, hot flashes aren't funny. They're hot and uncomfortable and unpredictable. I'm not a fan.

Worse than the hot flashes, though, is the hormonal imbalance. That post-partum-like depression? It didn't stop when I started nesting. It just got worse and worse. As my estrogen plummeted, it seems the menopause had a nasty interaction with the thyroid stuff and I got depressed. Not sad. Depressed. It was very dramatic and tearful and miserable and I look back at it with embarrassment.

I can't describe the experience of clinical depression better than Ali Brosh did, so I won't try. I'll just say, it was bad. I had a very involved doctor and a good support system in place. Not sure what would have happened if I didn't. As of now, I'm ok. Yes, I've still got the support system in place, and yes, I'm still being monitored by the doctor. It's going to be fine, I think. I haven't cried in days now.

I'm on a lot of hormones now. I mean... a lot. My doctor started me on a dose... then doubled it... then doubled it again. Being on quadruple estrogen is weird. I'm suddenly enamored with all things pink and I can't believe how much flannel I wore while I was depressed. Hello Kitty is suddenly adorable (in a non-ironic way) and I really want to get a pedicure. And babies. I want to squeeze or steal all the babies that come into the bakery. Also, that crepe-y skin that was developing on my neck is getting firm again. And my nails and hair are stronger. It's all very strange. But better.

And the Beat Goes On...

By my count, I have had seven surgeries, hospitalizations, or procedures in the last two years. Nine in the last three years. Prior to that, there are at least a dozen more. I'm certainly not the record-holder, but I'm no stranger to how this whole thing works.

Here we are, four and a half weeks after the World's Most Complicated Hysterectomy, and I think I'm behind on the whole healing thing. By my estimation, I should be done by now. But NOPE. Another day, another complication. But I can't stop my life for weeks and lay around waiting for recovery to happen. When post-op setbacks happen, they have to fit in my day. Today is a good illustration of that.

Monday, November 10th, 2014

7:00 am: Finally decide that the alarm clock has a point and drag myself out of bed. It hurts that spot by my incision to sit up.

7:20 am: round the kids into the car. Getting into the car makes the spot by my incision hurt worse than ever. It's been hurting for... two weeks now? Time to call Pittard.

7:32 am: Deliver the kids to school.

7:35 am: Unload the bakery's recycling out of the car at the drop-off near the school. Twinges a bit in that spot.

7:39 am: Bakery supply shopping at Kroger (Did you SEE this week's butter sale???)

8:14 am: unload the butter (and other supplies) at the shop, put them away, check and answer all the voicemails, emails, and PMs. Call Pittard, try to get an appointment. Told to wait for the nurse to call me back.

9:01 am: Procure breakfast on the way to the car wash. Oh, Jack's iced coffee, how do I love you....

9:13 am: Drive the car through Goo Goo and then vacuum half the neighborhood's crunchy leaf bits out of the back floor. I'm moving too slowly- Call for appointment with Pittard again.

9:31 am: get eyebrows done finally- but that spot hurts leaning back in the chair.

9:40 am: Check out the thrift store- I know it's been missing me- find super cute tea cups for the new tea party tables

9:48 am: Cruise through Belk. Try on diamond ring just for shiggles. See cute purse on floor- can't bend over to pick it up and check it out. Someone has to fix this.

10:25 am: Arrive at Medical Arts Eye Clinic for a full.... FULL... glaucoma work up. Pressures, dilation, pics of optic nerves, pics of tumor in right eye, bright, bright lights in my dilated eyes make them tired and sore.

11:42 am: leave eye clinic, sore, and call Pittard's office again. Offer to just stop by since I'm already in Auburn. Told to come at 1:30 for an ultrasound. Score!

11:50 am: Home for lunch. Leftovers and Dr. Who reruns are cool.

1:10 pm: head to the ultrasound store.

Ultrasound shows something weird in there. A hematoma? An abscess?

Kinda looks like Grumpy Cat

Have a thorough exam.

 Have a good, long talk with my Pittard. He orders a CT and blood panel to get more info. We have a long discussion on pain meds and find a compromise in Lortab Jr. (that's not it's real name, but that's how he convinced me to take something, so I'm sticking with it). Also discuss hot flashes and mood swings... and the depression. He starts me on a low, low dose of estrogen. We'll see how that goes. They draw some blood and...

2:54 pm: Back up the road to the hospital for the CT.

 This hospital thing is getting old. Doss and the kids meet me up there with caffeine and aspirin for my eye pain-induced headache.

My kids have done too much homework at the hospital already

4:39 pm: CT is over, get to go home!

4:52 pm (yes, 13 minutes later, really): My Pittard calls with the scan results. Inconclusive. Sad trombone. Take the pain pills, take it easy, and he'll call when the blood work comes back.

If it gets better, great!
If it gets worse, probably surgery.


So... that's where we are.

I want to get up in the morning and be whole and strong and energetic. I have things to do! But my body is a vicious traitor and it's far more accepting of my middle-aged status than I am. So I'll get up tomorrow and say bad words when the act of sitting up causes me to feel like I'm being ripped in half. I'll go to my beautiful, mildly haunted bakery and spend the day puttering around while a bunch of cakes run through the oven. And then I'll come home and be more tired than I should be after a day of just puttering and baking. And that's ok, for now.

What Happened.

This one is pretty gross. If you're one of my brothers or grossed out by girl plumbing, you shouldn't read this. But this is where I record what happens in my world- and maybe someone will see it some day and it'll give her a clue about what's going on in her own weird body.

This story doesn't actually start Wednesday. And, it doesn't start with the pain I was having last month, either.

This story actually started at the end of 2011. I know. But I want to record what happened because I have a tendency to forget these things. Most of what I remember from the thyroid cancer adventure comes from this blog. I choose to see my selective memory as a blessing.

At the end of 2011... October maybe? I started having a weird situation. My once clockwork-normal periods went out of whack. They actually reversed- I went from bleeding 4-5 days a month to not bleeding only 4-5 days a month. I know, gross. The really sucky part was that it came with pain. Pretty bad pain, all in my abdomen and radiating up the left side of my back. There were a lot of things going on in our world during that time, and we all kind of assumed the thyroid cancer was the cause of this mess. But it didn't stop when I went into remission, so I went to my Dr. Pittard. In the spring of 2013, I had a procedure to fix it. Well... four. I had four procedures to fix it: hysteroscopy, laparoscopy (to see what was going on), DNC (to stop the bleeding), and an ablation (to keep the bleeding from coming back).

The ablation was great! I was sore for a few days, but that was nothing new and the bleeding stopped!
The hysteroscopy and laparoscopy were interesting. They showed some signs of what might be the beginning of endometriosis. And a cyst on my right ovary. Nothing that should have been causing the amount of pain I had been feeling, but the ablation made me feel better enough that I went on with life, happy.

Endometriosis is hard to diagnose, ya know.

Fast forward to last month: the pain, that old pain I'd had before the ablation, was back. And it was angry. We now know that it was a chocolate cyst rupturing by my uterus.

*Sidenote* chocolate cyst? Seriously? Who named it that?

So, the cyst thingy ruptured (apparently, didn't know that at the time), it hurt, I was cranky, but I ignored it. Weeks passed... and then Wednesday happened.  On Wednesday, I took the kids to school, went to the bakery for a meeting, nothing really out of the ordinary. I had a little head cold... and I thought that was causing the little bit of nausea I felt. But around mid morning, it started to hurt. HURT. I don't know what all I did- I kind of went in and out. I messaged Doss that I was hurting. I called and got an appointment with Dr. Pittard for that afternoon. I remember, at one point, being on my hands and knees in my bedroom screaming in pain. I remember trying to lay down and passing out. I remember at one point passing so much blood that I wondered if I was having another miscarriage (later found out that was a terrifying side effect from the ablation).

Doss came home and took me to the appointment. My Dr. Pittard checked me out and ordered an immediate ultrasound... but the ultrasound couldn't fit me in until 9am the next day. Made it to the ultrasound after a night of nausea, vomiting, and fever. She checked me out and found a little cyst on my left ovary this time and a big blood clot-looking thing (we'll later find out this was the ruptured chocolate cyst) outside my uterus. But because the left ovary wasn't getting any blood flow, it was dying.  And it was taking me with it. That was the pain and nausea.

I was sent directly from the ultrasound to my Pittard where he did a quick pre-op check up (the usual, lungs, legs, heart). Then he sent me straight to the surgery center, do not pass Go, do not collect $200. The surgery center at EAMC is like my Cheers: everybody there knows my name. It's a familiar place that I usually associate with getting better, so it was good to be there. Waiting sucked. But I didn't have to wait too long. But I was in a lot of pain. A lot. And I was pretty freaked out. It was a tough wait.

The plan was for Dr. Alverson (who was on that day) to try to do the surgery laparoscopicly. It should have been quick and easy. He'd take the uterus, try to untwist the left ovary, and leave at least the right ovary in there so I wouldn't have to go through menopause at 37. I signed the consent for full abdominal surgery and everything in case the laparoscopic route didn't work.
Boy, did it ever not work.
The surgery ended up taking over four hours. I had stage III/IV endometriosis that had completely involved both my ovaries, my tubes, my uterus, and anything else it could get near. Dr. Alverson ended up calling in another surgeon to get the intestines that were in the wrong place from previous surgeries unstuck from the endometriosis. They took my uterus and both ovaries. I have a little bit of cervix left.

And I *just* bought a new box of tampons this week.

So, apart from the almost dying part and all the pain and the fear and stuff, this adventure was pretty great. Here's why:
1. I no longer have to wonder *when* I'll have to get a hysterectomy.
2. My kids were well-cared for by my mom and Doss and Shanna and everybody. I never had to worry.
3. Nobody got too mad at me for the cakes I had to cancel.
4. The bakery had a party without me and it was fine.
5. I felt so much love and support (and flowers!) from so many people. That was pretty great. And people came to visit!
6. Now that I'm in menopause, the hot flashes counteract some of the perpetual cold that comes from not having a thyroid. I'm almost balanced.

The List *Updated

This is the list of body parts I've had removed, not including tumors, mucoceles, mixomas, and such. I'm also not including the two times I had complete human beings cut out of me. The actual surgery list is much longer- this is just the parts removed, current as of 10/14.

This list is in chronological order, for the morbidly curious.

And no, I do not have plans to have anything else removed any time soon. I never do.

Most of my large intestine (Hirschprung's disease- you can google it)
Spleen
Appendix
Tonsils
Adenoids
Wisdom teeth
Gall bladder
most of my breast tissue
right side and isthmus of my thyroid
left side of my thyroid (and radiation to ablate any little pieces)
Uterus, both Fallopian tubes and ovaries