Friday, December 29, 2017

i have a best friend.

I have this best friend. I don't really know what to say except that she's the counterpart to the weirdest parts of my brain. I go into the deepest places of the oddest parts of the internet and there she is laughing with me. Her husband, Kirk, has stage 4 colon cancer.

Let me explain something. A little over a year ago, Brittany was taking care of her grandfather who had colon cancer. He lived with them, she took care of everything - and this wasn't even the first time she has done that. Brittany's job, for years, is to take care of an adult low functioning autistic 23 year old. She knows that family bc she took care of BOTH of that girl's parents who died of different types of cancer. Brittany is a professional in the absolutely worst department - death.

Kirk and Reese have a bond. They are "porties". He goes to lunch with her - brings her favorite. Chick-fil-a nuggets, fries, and a diet coke. They laugh, take pictures, the school office says nothing of this odd couple arrangement of BFFs that shows up on Kirk's off-chemo weeks.

They often have fun playing online games together and sometimes even go on virtual adventures. Something that makes them laugh is spinning the reels at the virtual slot machines, and they giggle when the scatter sounds play. They do that just for fun, playing every online casino game in demo mode without using real money. They even try out different gaming options together, such as:

  • Video poker
  • Roulette
  • Baccarat
  • Live dealer games
  • Video slots
  • Blackjack, etc.

When they're willing to try out something new, they read reviews and rely on expert opinions to guide their decisions. Overall, they have a lot of fun together and enjoy every moment of their gaming adventures.

Diagnosed in January of this year, there was so much hope. Surgery, chemo.... but that chemo didn't work. Parts of my heart were broken and dissapated into heartbreak as the protocols trucked on, but Kirk's multiple tumors didn't cooperate. Conversely, Reese's tumors shrunk as Kirk's became uncontrollable.

Jan 8 is the start of a trial. The last scan says what everyone knew - things have grown, metastatic spread to the liver and other body parts has been something that has been looming over everyone's head since he was diagnosed. The trial will be hard, as far as organizationally, and I will be there to help in the ways that I can. I will sit at your house, I will make you dinner, I will do laundry to the best of my ability (to your standards, B haha), and I will take their daughter, Miller's BFF, every night, if needed. It is one of the things I love to do most.

<3 nbsp="" p=""> Dear Kirk,

You. You are the most amazing and brave human that I currently know. That is saying something since I have a daughter with a brain tumor. There is something to be said about pediatric cancers, though - they have a will and way that is untainted by life. Being brave to a child isn't the same as the stressors as being brave for an adult and that makes this journey 100x harder than I ever would have wanted for you.

You. You are the best father and husband that someone could have - because I know that you worry, you care, you stress. But I need you to understand that no matter what happens, I am the people. I am here. With tears in my eyes, streaming down my face, I want to tell you that I am here and I won't ever be anywhere else except here. I am here to rally your family. I am here to get your wife out of bed. I am here to take your children to school and cry in the car if need be. I am here. I am here to drink Mich Ultra on the patio you built and to find hilarious colorectal cancer cards on Etsy to make you laugh. I want you, most of all, to breathe easy that I am here for whatever life throws at your wife. She is my other half. My person. The other person on the planet that understands the oddest things I can think.

I love you stoma "ch",


Tuesday, November 7, 2017

That feeling.

I wanted to write a 5 year post dx blog last week. Then I didn't. Then I wanted to for sure do it this wkend. Then I didn't. And so I am trying to sit down now and finally put words with the way I feel. It is interesting bc I feel both removed and also covered in the same sort of feelings.

5 years ago seems like a lifetime. When I think about the things that we've done since then, where we've been, who I have known, who I have lost, who I have kept, and who I have gotten rid of... the places we've been - the vacations and road trips. The time we have spent at soccer or dance or girl scouts...

...I *almost* forget about the years that we lived in the hospital. The once a month stint of days pumping chemo into my 2, 3, 4 year old. The 2 weeks after that when Reese inevitably got a fever with a zero ANC and had to stay in the hospital for a few more days. The passing around of children between me, EJ, my parents, friends so we could get to where we needed to be without leaving Reese ever alone.

I almost forget about the bad coffee inpatient, the fear of eating the hospital sushi, the runs down to the cafeteria at 10pm while R slept so I could finally eat for the day. I almost forget about how I would watch Everybody Loves Raymond, then Friends, then King of Queens on TV every night that I spent Children's because it was my timeline of how late it was while I watched Reese finally close her eyes after a stressful day.

I almost forget about her encephalitis while I was 38 weeks pregnant with corbin - or her sepsis a few months later.

I almost forget about Reese not walking. At all. The years she didn't walk. The amazing granny walker that she finally used to get everywhere as opposed to scooting that I still have in my garage is some of my favorite times in our journey. Bald Reese, puff head Reese, spike hair Reese, bob hair Reese, and now she needs regular haircuts.

Now we wake up and take meds, get ready for school, and send her off for a day on her own with the most amazing teachers around. She goes to parties with her friends, she does her homework, she takes care of her sisters... but she prefers to still sleep with me. She still fits on my chest in my arm nook the exact same way that it did when I would rub my face on her hairless scalp. She gets bigger, but apparently that space does, too.

I don't know if I really have anything poignant to say except that I haven't blogged first day of school pics, didn't write about our trip for our 10 year anniversary to vegas, haven't put down all of the amazing photos of daily life that I usually do and it makes me feel sort of stressed inside. I have to get better at that again. Kids getting older seems to be the goal when you're in the thick of toddlerhood for so many at one time - but older kids brings so many more time consuming events. I have been really trying to savor the hour (lol) at night that I get alone-ish. I am trying to let go, catch up on tv, drink some wine and chat with friends...

Regardless, I will catch up on those things I have put into a folder to post eventually. Corbin is home from school because she hasn't been feeling well, Miller was home last week for the same germs. Aidan has a broken wrist and thinks she broke the thumb that is already in a cast, but I tried to wrap it last night and apparently made it hurt worse. Sawyer lost her mind this morning because I had the wrong fruit bars for breakfast. Reese was mad bc the rest of the kids wouldn't wake up quickly enough and she had been coloring at the kitchen table since about 5:45am.

5 years ago, I was hoping to see today with Reese. I was praying that I'd have a fight over her hair and whether or not she needed a jacket. My next 5 years will be full of different types of worry, but for now her meds are working well and so, like I usually do, I will relish in that feeling and wait 2 more months for the next scans.

Reese's FB page:

Friday, July 21, 2017

Onward, summer.

I've been doing a lot of my posting on instagram lately because it is easy - but that is lazy because it really has no words... unless you count that a photo is worth 1000 words and then in that case, I am a novel writer.

Reese's last MRI was awesome. I consider awesome meaning that we are continuing her meds bc the MRI saw stability and a little bit of shrinkage (maybe). Awesome has different meanings as you go through a diagnosis, etc. Sometimes just being able to be status quo is definitely awesome.

This summer has flown by and we are already heading our way out of July soon. In June we went to Blue Skies in FL - which was like our lighthouse trips, more or less, but different. It was such a woooonnnderrrffullll time. EJ had to work and couldn't get out of it bc it was a go live week - so I asked samantha (and avery. and AJ. our BFFs from our colorado trip last year) to apply also and we traveled as one big family in the huge van :)

They always ask, when you're at these retreats, "why did you want to come here?" and I usually answer the same way - I spend my entire life really *not* around cancer parents. It isn't on purpose, per say, but I don't go out of my way to make friends that I regularly see that are cancer parents. I have a group of friends that "get it" without having to experience it. Maybe if we were younger or more immature or if my friends were less about wanting to learn things about reese -  I would need that, but I don't. My friends are such a blessing because they listen and just want to *know* and don't judge a dang situation or thing.


Once a year, I do enjoy the "ugh right?!" and the "no one understands that!" and the  "what protocols and chemo do you do?" and "i know! that is so frustrating!" with cancer parents. Even then, part of the time I feel as if we are the ones with a terrible start - the 6w stay, the surgeries, the DI and the hydro, the closest to "a few more days and she could have died". And that is countered with "only" having to take pills. She *only* has to have her port accessed once a month. She is almost 5 years further away from who she was before.

Also, I have a sort of exhaustion for saying that I am at a point where I feel like our every day is relatively normal. It isn't a jaded exhaustion - it may be more of a blessed sigh of relief sense of it. But I just feel almost guilty for being where we are today to where I just don't see a need in talking about it.

But the beach... the ocean... it is where our hearts want to live every second of the day. They asked if anyone wanted to be baptized in the ocean one of the days - and I knew aidan would say she wanted to. She had asked to at our church, but I knew it just wasn't time. In the ocean - that is where you remember where you said, in front of everyone, what you believe. They played on the sandbar with the big kid friends, they sat at the coastline and made sand castles. They napped on the beach covered in shady towels. I walk away from the beach as if it has renewed us, every time.

So far the rest of the summer has been at the pool, dance, and sleeping in. RMC still go to school on tues/thurs in the summer so I get to take the big kids out for nails or the movies or whatever on those days.

Our next adventure is a road trip west. Exploring with my family and friends is one of my top favorite things to do. Even in the moment when you think "why did I take 5 children to this?" the memories looking back only hold the magical times. I am blessed that is how my mind seems to sift things later. lol.

Well, onward to the rest of the summer. More rosy cheeks and tan lines. More pool hair and tangles. More laughing and crying for snacks. More us.