The Dragon

On January 29th, I went to my primary care doctor for a lump on my abdomen. I had been noticing the lump for at least a month – typically during my workouts – but hadn’t really thought much of it. Then, during one of the 4 snow days we had in January, I decided to google lump on abdomen. The results led me to go see my doc the next day.

At that first visit, my doc used the phrase “tumor on your abdominal wall” about 3 times. I quickly scheduled an ultrasound and continued googling. As I waited for the ultrasound appointment, I became a bit of a recluse. It’s interesting because I’m typically a wide open book, but there was something about this fear that was different than anything I had experienced in my life thus far. I didn’t want to talk about it… it was too much.

Mark came to the ultrasound appointment with me. We were both so nervous. The last time I had been there was to see our sweet Henry in the womb. Definitely a different experience this time. The ultrasound tech – who was the same tech we had during my pregnancies – eventually ended up telling me to relax. “It looks like a hematoma from a sports injury. Definitely not something to be overly concerned about.” Okay… deep breath.

I then went to the surgeon my primary care doc recommended. He confirmed that it’s likely a hematoma. I was told to watch and wait for 6 weeks. Despite not having any real sports injury, I do work out at Orangetheory 4-6 times per week and they thought that my fruit-pit of a lump was likely from a torn muscle. A hematoma should go down in size, so we’d wait and reevaluate.

After 2 or so weeks, I started to feel what seemed like another lump. I called and they told me to keep watching. By the next week, there was definitely another. Of course, I couldn’t get back into my doc for another week or two, but when I did, we began a new little journey.

There was in fact another and it was time to retire the hematoma theory and move on to the “zebra”… the rarity. My doc scheduled me for a CT scan. I was back to panicking. I spoke to a friend’s dad who suggested it might be a Schwanoma. My doctor had listed everything from a sarcoma to breast cancer. Nothing was off limits.

There was lots of waiting only to find out that the CT scan was inconclusive. Next step, needle biopsy. I’m going to be honest, I was not overly concerned about pain from this and was VERY unpleasantly surprised during and after. I assumed it was like a shot. I was wrong.

I had driven myself to the doc and met my husband there. I called him on my way back home and all of a sudden, the pain and overwhelming emotion hit. I had to go. All I could do was just drive. I had to get home, crawl into bed and just be in darkness.

My doctor had told me that the needle biopsy had something like a 92% diagnosis rate. No surprise that after waiting the weekend for results, I was told that the results came back inconclusive.

The next step was surgery. For someone who lives in the black and white, I was really stuck in grey. So much unknown. So many people telling me I would be okay, that it was probably nothing, that I shouldn’t worry… but me knowing that nobody knew how it was actually going to end up.

The surgery was hard for me to swallow. My surgeon would go in… he would perform a biopsy and send it to the lab while I was under. Depending on the results, he would either leave the tumor in, remove the tumor only, or do a wide resection, removing the tumor and healthy muscle and tissue. I would get to find out upon waking up.

The whole thing was so surreal. I got to the hospital with Mark on March 21, 2019, first thing in the morning. Mark insisted on taking pictures and of course, got a good laugh out of me…

Then, my parents came. In pure dad-form, he was cracking jokes, making me laugh, distracting me. Maybe throwing in a few of his, “I totally know how this goes” comments because my dad knows everything. Yes, I’m being sassy. Then, my MIL came and I instantly got choked up. I pulled it together until my surgeon came to get me. Then, as I got wheeled away, I couldn’t help but cry my little eyes out (and warn the doc not to say anything scary or weird while I was under).

I got into the surgical room, still crying. They asked me what kind of music I wanted to, which totally threw me. I think I said something like “folk pop music,” which in hindsight makes me laugh. I have no idea if music ever played. Next thing I know, I was waking up in recovery.

When I came to, I was told that they removed the tumor and just the surrounding healthy muscle/tissue… not a wide resection. Okay, good! The tumor was likely a desmoid tumor, which would be confirmed when the final biopsy results came in on March 25th. A desmoid tumor is a rare (2-4 people per million) sarcoma… it is typically not considered cancerous because it does not metastasize to other areas of the body; however, it is locally malignant and seems to have a high recurrence rate. My surgeon made what I believe to be a good judgement call… he preserved my healthy muscle and tissue, but as a result, left 50% positive margins (aka 50% of the sides that were touching the tumor still have microscopic traces of desmoid cells).

I was released from the hospital the same day as my surgery. To be honest, I’m still surprised by that. I’ve had two c-sections and the pain from this surgery topped them both exponentially. Everything now seems like a blur, but the pain was just terrible. Mark would have to lay me down and lift me up to go to the bathroom… in fact, he even had to pull my pants off and put them back on for me. Lovely, huh? I could barely walk and was most definitely not getting out of bed.

The next three weeks are a bit of a blur for me. I was back in my reclusive state. I was hurting and I was scared. I had a very hard time talking about what was ahead and talking about the diagnosis in general. I was emotionally unstable, which was so foreign to me. I’ve always been more of a “stuff the emotions down” kind of person, but here I was bawling my eyes out over the smallest things, calling my parents in sobs… just unrecognizable. That was the hardest part. But the light was my amazing husband, our babies and our families and friends who legit kept us together.

But then, a little light. We found the Desmoid Tumor Research Foundation and they happen to be hosting a patient meeting in mid-April. Our families urged us to go, which honestly helped a lot. I was at the 3.5 week mark when we went. I was still sore, but feeling way better. And mentally, I was starting to “get a grip.” I actually had to be in Charlotte for a work convention earlier that week, so I met Mark in sunny California for the conference. We stayed with his family who lives out there. We spent a full day exploring San Francisco and a full day not really thinking about my diagnosis. Just being us. It was perfect.

Then, the next day, we had an amazing conference. We were able to talk with docs who specialize in desmoids and get answers to our specific questions. We left feeling informed and empowered.

When I got back to Wisconsin, my care started to transition from general surgery to oncology. Again, that was a bit of a pill to swallow. It’s just scary. I met with a geneticist who did full genetic testing to make sure I didn’t have FAP, a genetic disorder that can cause desmoids. I met with an oncologist who ordered my post-surgical MRI and talked to us about options should my tumor return.

I’ve since had one scan, which lasted 2.5 hours!! Ugh. The results are decently irrelevant until I have a second scan. After my surgery, I had an apple-sized hematoma. It has gone down now, but I still have what they think is a hematoma or seroma and scar tissue. Whatever it is has gone down to the size of my original tumor. Gotta love that, right? Perfect for my paranoid mind.

My hematoma at about 4 weeks post-surgery.

I will have my next scan in August. At that point, we are hoping to see that the “indefinitive” mass has stayed the same or – hopefully – gone down in size, confirming that it is truly just the after-effects of surgery. If I have a “clean” scan,

Assuming no tumor, I will continue to have 2-4 MRIs per year to monitor and make sure I remain tumor-free. If the tumor returns, we will look at cryoblation, which essentially freezes the tumor cells, chemotherapy, and/or radiation.

BUT, for now, I live. I have taken my head out of the sand and resumed to normal living. Things are good. I feel good. I still get pains at the tumor site, but I am back to working out and just all around normal life. Every so often, I start over thinking things, but 99% of the time, I am good and I am grateful. This will not kill me. And, I hope that what doesn’t kill you makes you stronger!

Coffee with Char

Mark has been super busy at work lately, so instead of him driving Henry to school on Mondays and Fridays while I wait at the house for Nana with Charlotte, C & I have been taking Henry to school and meeting Nan at our favorite coffee shop.

Our little 3-way dates are adorable. Charlotte really shines in these moments. She’s talkative and expressive. Absurdly sweet and charismatic. She is just a total gem.

I love taking pictures of her in these moments. As she picks at her muffin or scone or whatever baked good she’s conned me into buying her… she’s like a squirrel nibbling at the most sugary parts first. As she speaks with full expression, hand motions and all. As she soaks in the undivided attention from Nan & I.

It’s such special time with my big girl.

Hand Holding

Sometimes, Hem just wants to hold my hand while we’re in the house. While he’s eating breakfast, as we’re walking from one room to another, whenever. And when he does, my heart melts into a little puddle…

And one of my girl from the same day:

He’s definitely the biggest smoocher I know. Just a total cuddly lovey pie.

Thanksgiving 2018

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It should be noted that Thanksgiving 2018 was a lovely affair. Obviously I’ve neglected this special little blogging place of mine over the past two years, but wanted to make sure this got in the record books.

We’ve always done Thanksgiving at my mom’s house, which is lovely. I legit love Thanksgiving. This year, everyone had something going on. Bro was going to his wife’s turkey day, sis was headed to Door County. SO… we decided to head to California to see my favorite people on this earth. AKA my other “sister.” AND of course, my aunt & uncle and my cousin’s lovely manfriend.

The trip was magical and Thanksgiving was AHHHMAZING. It’s ridiculous how easy Thanksgiving is when you show up as a total guest. Normally, at mom’s, I am planning menus leading up to Turkey Day, helping cook  and setting up the day prior, and there early that day to cook some more.

This Thanksgiving, all slaving was done by my incredible Aunt and my mom’s cousin, Melissa. And oh my did they go above and beyond. Not to mention the fact that Melissa lives in a little California dream of a house. It was FANTASTIC. We brought some wine and a centerpiece (made by the kiddos) and then boom. Done.

While poor Melissa and Aunt Helaine probably needed a week of sleep to recover, the whole thing felt wildly easy, relaxed and just perfect to me.

It should also be mentioned that little C spiced things up when Mark forced her to taste the sweet potatoes. Sweet potatoes are her nemesis. She showed him when she instantly barfed right there at the Turkey Day table. Lesson learned.

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The rest of the trip was equally magical. My cousin’s boyfriend’s brother & his gf were there visiting, too! They are absolutely adorable and all four of them crashed at our airbnb one night. It was just so much fun.

Photos from the travel to Cali…

From our trip…

Highlights: Exploring neighborhood parks, venturing to the Grove & taking the Trolley, swimming at our AirBNB pool, picking oranges every morning from our AirBNB’s orange tree, Asian Day Spa-ing with Stef & Mom, Henry’s first time sleeping in a big boy (racecar) bed!!!, dipping our toes in the ocean, & of course, excessive time with my favorites.

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And, what’s a trip to Cali without some Disney magic, right???

All in all, A+ trip.

The Bubble Burst…

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Charlotte & Henry have often shared their future plans of getting married. Now, we all know that this is not possible in the wonderful US of A, but Mark and I have not found it necessary to clarify such restrictions. One can assume that by the time they are facing marriage decisions, they will have moved past their uninformed (and precious) childhood ideas of marrying each other.

Well, apparently, some chick named Abby (who is likely 4 years old or younger) was not so confident that they’d realize this on their own and decided to shut it down.

C: Mommy, Abby told us that Hemery and I could not get married.

H: Yeah. That not weally, weally kind of her.

C: Yeah! And my teacher said we couldn’t either.

Me: Hmmm. I see…

H: I’m gonna put her in jail!! (JK… he didn’t say that. BUT since it’s his response to everything, one could assume he might have been thinking of saying that…)

Me: While I’m sure that was surprising to hear, they weren’t wrong…

C: Huh?

Me: Well, you cannot actually marry your brother or sister. BUT, it doesn’t really matter. You two should focus on being best friends because through everything, you’ll always have each other and will always be the very best of friends.

C: I might want to marry someone else.

H: Yeah, me, too! Like Connor. He’s so cute and nice. He smiles when I smile!

C: Yeah. Because a boy can marry a boy or a girl can marry a boy or a girl can marry a girl or a boy can marry a girl.

Me: Woah. Yes. You’re exactly right, Charlotte! (I was mind-blown impressed with her statement, which Mark later told me stemmed from a conversation they had earlier. Go Marky!)

H: Yeah. I’m gonna marry Connor and Beau.

Me: Well, you can’t actually marry two people in the United States.

H: I’M GOING TO MARRY CONNOR AND BEAU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Me: Well alright then! (turns the radio up)

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My sweet boy

The other day while Henry was eating breakfast and I was running around trying to do 8 billion things, this simple & sweet conversation stopped me in my multi-tasking tracks:

H: Mommy, you’re cute and I love you.

Me: Awww buddy! You’re cute and I love you.

H: I love you super hooper super hooper!

Me: I’m buying you a pony.

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Mini Chats

This morning while I was in my bathroom getting ready, I overheard Charlotte & Henry chatting over the baby monitor…

Charlotte: What did you dream about last night?

Henry: Mommy, Daddy, You, Char… I dreamed about you, too, Charlotte!

Charlotte: Did you dream about yourself, too?

Henry: Yes!

Charlotte: What a good little buddy. Such a good buddy…

Henry: I love you, Charlotte!

Charlotte: I love you, too, buddy. You little buddy…

Henry: But look what I can do with my car!!

***

Meanwhile, I’m trying to scrape myself up off the floor from the puddle I became…

I just love those little lovies.

Valentine’s Day

2019 shaped up to be quite the little Valentine’s Day with my loves. From homemade valentine’s for the kids to hand out in class to our own little celebration at home, it was definitely one for the books.

While I recognize the exploited nature of days like Valentine’s Day, I still absolutely love the day. Why wouldn’t one embrace a day that literally exists as a reminder to spread love and kindness to the special people in our lives? Really, who doesn’t need a reminder?

So of course, I have to go over the top.

On Valentine’s Day, I woke up VERY early to make heart-shaped french toast with berries before my 6am workout. I hung up Charlotte’s homemade Valentines on the window and put their Valentine’s Day gifts up on the counter. Everything was set.

When I got home from my workout, the kiddos were in a blissful state. So happy with their breakfast and SO pumped to open their gifts.

Charlotte had been oogling this absurdly soft teddy bear named Puffles for weeks. She’d asked for it many a time and the answer had been no. SO… of course, I had to get her the damn bear for Vday… because she just loved the stupid thing. AND, a pair of stuffy slippers.

Hem got a light-up book, a wind-up dinosaur and a pull-back monster truck.

However, my favorite gift of the morning (besides my new leggings from hubby), were the socks I got for Marky! SO funny!

The kids spread love all day with their Valentines.

I also made chocolate covered popcorn with V-day sprinkles with little tags that said, “You Make My Heart POP”… but of course, in the fun of it all, I forgot to take a pic (although you can see it in the picture of Mark’s socks!)!

Then, at dinner, they got their favorite meal, which is noodles with fake butter. Seriously… favorite meal. AND, Marky and I got our favorite meal: RAMEN!!!

It was just such a good day. It might not seem like much, but there was just so much happiness oozing all over the place.

 

CharlotteISMs

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As C&H get older, it seems as if their word quota for any given day has increased. They are constantly talking, and with that, comes some pretty hilarious/ridiculous moments.

Here are a few of Charlotte’s recent gems…

  • “My tummy says if I eat anything else it will B-splode” (read: explode)
  • Charlotte got sent to bed early one night due to the fact that she did NOT want to listen. After a minute in her room, she comes to the kitchen and demands fresh water. Wearily, I get her the water. “With icecubes,” barks the princess. This is where I decide to draw the line. With fire in her tiny eyes, she looks at me and says, “I’m gonna punch you in the stomach in the morning…”
    Mommy: <blank stares as C walks away>
    5 minutes later she’s back…
    C: “Sorry I said I was going to punch you in the stomach. I wouldn’t do that.”
    M: <hugs C>
    C: “Hopefully I don’t forget not to punch you in the stomach in the morning…”
    M: Uhhhhhh
  • Charlotte came up with a game the other night… Henry had to close his eyes, put any number of fingers up in the air and guess how many fingers he was holding up… He won… EVERY TIME.
  • Charlotte calls mommy and daddy on the phone from Grandma’s house and has full convo while RUNNING nonstop around the house.img_1203-animation
  • Charlotte snuck one of her new toys on the bus and let her friend “borrow” it… back in December. She has yet to see said toy. This morning she decided she wanted to write her friend, Henry, a note to remind him to return it to her… which ended up looking a bit like a ransom note.img_1285
  • Mommy: “Mommy gets to go to Charlotte, the city!”
    C: “Is that where I was born??”
  • Charlotte learns how to do jumping jacks…

     

  • C: “Hemery, wanna color with me?”
    H: “No..”
    C: “We can draw some H’s!!!”
    H: “Okay!!”
  • She’s the spunkiest little love. Full of personality, full of spice, full of SWEETNESS, full of love.