So John McCain and I have something in common...

It's weird to know when to break information or how to know when a story really "starts." For me, I have a doozy of a story that will rock a few worlds and break a few hearts. I guess I'll just jump right in and shock ya. I have been diagnosed with primary brain cancer.

We are working with a team of people to figure out exactly what that means - aside from the fact that I have a lesion in my right frontal lobe that is aggressive and malignant....meaning, not so good but maybe not so bad?

So, here are the events as they happened.

Our little family of four recently returned from a family vacation with my Mom and Dad in Allenspark, Colorado over July 4th. We took 9 days and just had a wonderful time! We had pretty much returned home, unloaded the car and tried to settle back into our normal routines. We got home July 10th, had a pretty normal work week and were settling into our first weekend home.

It was a Saturday, July 15th and Jeff had just finished up some stuff and the kids were inside driving him nuts while he tried to cool down and watch some TV. My big Saturday plans were to do a little repair to our drip irrigation system around the front of the house. I was outside on the porch organizing the little pieces of irrigation and had just taken a break from installing all of 10 feet of line. I was hot. Sweat was dripping so I got the hose out and pulled the kids outside to play on the water table near where I was working. I recall thinking, man, I could probably pivot a little and make a small misting system to cool the kids and I down between going out and installing new irrigation lines. That's literally the last thing I can recall doing until waking up with an EMT next to me.

Apparently, at some point I had a seizure on the porch. Jeff heard the boys crying my name and came to investigate why they were yelling and found me mid-seizure against the side of the house. I was shaking from the top portion of my body. There are probably some scary details here you don't need, but he said it was about 4 minutes and that he called 911. The paramedics came, I was taken to the St. David's ER in Bastrop via ambulance and given a CT scan to see if I had hit my head during the seizure.

The CT scan revealed a "mass" in my brain and they decided to transfer me to Austin's St. David's South campus for more MRI testing. Jeff and the boys were at the ER with me. Our evening plans were to go to a chicken dinner benefit with Warren's best friend Owen's family and hang that night. Warren was still very interested in that activity, so we called Malissa and asked if the kids could still hang with them - potentially overnight? She came up to the hospital, grabbed my babies and said keep me posted.

Jeff called my parents - Susie still being in Colorado waiting on the Weiss family to arrive for their week-long visit while Dad was in Houston. He got in the car. Davy was in New Orleans - she got in her car. Margie got in her car from Missouri. Things were getting serious.

I went via ambulance to Austin, was checked in through that ER and admitted. I spent Saturday night there and on Sunday, July 16 I had an MRI. The MRI resulted in very, very, very visual proof that I am a rare snowflake of a person. Only around 12,000 people are diagnosed with primary brain cancer a year. I've always known I was special; now I have medical proof and can argue with you about it.

Next step: brain biopsy. Wednesday, July 18 I got some good drugs, went to sleep, and woke up a few hours later with some slivers of brain tissue missing. I have a cool incision line along my right forehead, an inch into my hairline.

So, that's pretty much what happened and where things stand. We have a general pathology from the biopsy - it's indicative of a glioma and likely grade 3 but pending final confirmation by the Mayo Clinic - apparently, it's a good idea to have multiple sets of eyes on these things. Do yourself a favor and don't google anything. Whatever you read won't be happy and it won't be specific to ME.

Here's the amazing thing. I have had and continue to have zero symptoms. I feel the same today that I have felt every day of my life. I don't know how "other" people get diagnosed with this or come to realize something is wrong - but my route here doesn't feel very typical.

We're taking this one day at a time, one step at a time. I referred myself to MD Anderson last week and have been to their amazing campus and met with their neuro-oncology team. All assurances were given that I'm doing great. My body is strong. My brain is working. My doctor there said, "if you were to have a brain lesion the location of yours is where you want it to be."

Our immediate next steps will be to go into the same incision line from the biopsy and "de-bulk" the tumor. That means get as much of the tumor as possible out of my right frontal lobe (which by the way - apparently doesn't do much). They are expecting me to have no complications from that de-bulking - I'll be perfectly as I am right now - no neurological loss of function, memory, or ability. I'll still have to change dirty diapers. I'll still be really good at stupid trivia. I'll still have my same sense of humor and personality (you're all very welcome). I'll still be able to work - and have been even while in St. David's ER.

Once we have the de-bulking completed, I'll enter treatment to address the portions of the cancer they can't remove. We'll be dealing with a very specialized treatment plan based off of the DNA results of the cancer. The timeline for this is quick. We're hoping to have mass removal within 2 weeks, then have a treatment plan in place and in action within 2 weeks of that.

We don't know what the treatment plan will be other than likely radiation therapy (no, I don't get super powers) and chemotherapy (but not that kind that makes you lose your hair, etc), and perhaps clinical trials. I'll be able to work. I'll be able to live my normal life - with a few obvious modifications. The rest is all logistics. My main goals are to wake up every day, smile, kiss my husband, tell everyone I love them, hug my kids, pay my bills, feed my dogs, go to work and keep my brain happy and healthy, and spread positivity in the world hopefully much like I've been doing all my 35 years.

I can't drive for at least 6 months because of the seizure and the new anti-those meds I'm on. Which also means no alcohol (so drink an extra sip in my honor).

This post has been hard to write - not because it's difficult to admit or confess or explain my thoughts - but because I don't know who I'm telling? I've decided the blog is the most efficient way to explain what's going on, how we're doing, what we need, etc., but the people reading this are people who have known me in infancy, Singapore, Alaska, high school, college, work, life, random people (hi, nice to meet you), my parents' friends, my siblings, MY PEOPLE. I want to personally sit and tell you my story - and you deserve that - but I can't do it. I don't have enough words, enough Kleenex, or enough seats at my house or hours in the day. I gave up Facebook because I wanted to work on personal connections and that's been working for me. Follow me on Instagram for random moments of my life and I'll try to keep links posted on Facebook when I post here - no promises but I'll try.

I have a feeling a floodgate is about to open of love and support and encouragement from all of my wonderful folks - and I am SO READY for it. I ask for your understanding if I don't answer more than a thank you or heart emoji or a returned text at 3 am five days later. I'm also sorry for the inapprorpriate 4 am text messages - it's when I feel at my best (calm, rested, and capable).

I'm signing off of this incredibly long "brief" update on my situation with a list of important thank yous that I need to get started on.

1) Jeff - because of it all; every moment
2) Mom and Dad, and Mom, and Margie and Casey - you've put everything on hold, held it and me together, and been there helping me form the questions to ask and find the team we need to guide us through this. Your advice and guidance have ben priceless. For coming and spending time with us and changing diapers and giving goodnight hugs and kisses, and letting me check out for a few days while keeping my life running. And swimming lessons for Warren. You kept my crazy calendar together for me and my kids on routine. For all my favorite foods made from all our secret favorite family recipes.
3) Mr. Don Long for the deep freezer!
4) Malissa and Charlie for the Care.com calendar, keeping my babies for two nights and your continuous outreach and support. You called my priest! You're amazing and I am blessed to have you. Couldn't ask for better future in-laws for our children.
5) Sarah and Philip Johnson for dinner and loving my kids and bringing your brood with dinner and entertainment. Your love and support and google skills and diets and texting with my family. You don't know. But you will.
6) Erin Young - my boss, my friend, my platonic other half. I have a fun math story for you that only you would understand and appreciate! Y'all might think you have a job or work family that is the best ever - you're wrong. I work with the best and that's the team of Slide UX who I can tell you is a part of my family forever. Poor folks.
7) Chad Currie - for dinner. Literal winner, winner, chicken dinner. And cookies. I recall cookies?
8) My aunts who drove from New Orleans to keep my dad sane while Susie was in Colorado and my Ya-Ya Priestess for my counterbalancing rocks and creole magic...and legal vetting of drs...and keeping dad sane. And giggles when we really needed giggles.
9) My siblings who kept my mom sane while she was in Colorado. For my other siblings who have all been amazing and bent over backwards to just be there for us. We have the best family and I've always known it - but we've officially proven it now.
10) Esther for visiting and bringing me goodies
11) John Curtis for visiting
12) Kelly and Chris Taylor for flowers; Don't think we're out of Chris Stapleton - it's happening.
13) All the calls and texts and outpouring of love and prayers from around the world. This has been the most amazing response that I have ever heard of and could never have imagined. For everyone who has texted my parents
14) Linda Autry - for voodoo and pedicures; my friend; my heart.
15) Sarah Garner - for keeping my hair appointment and cutting all my hair off so I could enjoy soccer in August.
16) Jenny Elder-Moke - because you're going to have to do so much blog reading and making me sound like a sane person even when I only have half a brain. Thanks for taking on your assignment with such grace. I've always said I wanted to see the way your brain was wired - who knew we'd find out how mine was wired first. Boo.

This list is incomplete - forgive me if I've left you off, but I have brain cancer and I may forget some things from time to time ;) (also, I'm milking brain tumor jokes so if you've got some suggestions or memes or punchlines send me some).

Finally, I know you're all wanting to know how to help. I like to get mail in the mailbox (and so does Warren).

  • He also likes dirt, hot wheels, color changing Hot Wheels, and Paw Patrol / Puppy Dog Pals / PJ Masks. But mostly dirt and cars.

Send me a note about a funny memory you have of us or a picture of us together. You may recall I have a fondness for laughing and just goofing off - sometimes that means I might have "forgotten" the funny things we've done or stories I should recall. So, right now, if you're feeling like doing SOMETHING - send me a letter, or a picture of us. Send me a prayer. But please know that right now we're good. Right now we're going to get through the next 4 weeks. Then I'll be asking you for things. Lots of things. You've been warned.

We'll also soon be inviting y'all over more. We want to see you. We want share our family with you and have our kids meet and play and cut up. I want you to spend time with us and let's just remember to enjoy life and enjoy each other - that's what's important. We'll keep ya posted as that time starts to come around - but know it's coming.

Ladies, we're going to start a bingo club. Once a month, we're going to play bingo with the old people. Someone's coming to drive me to and from - we'll figure that out. Sorry you're going to have to do a lot of the work to spend the time I want you to spend with me.

We'll also be stocking the freezer on occasion. You're so in for it.

I must away - Connor is currently calling for me over the video monitor. Talk soon and I'll keep you posted on progress.

(Also, don't be surprised if I start texting you randomly any time I have a thought about you - I'm on a slight appreciation kick these days).

Comments

  1. Beautifully written, Hanna. Who cannot have memories of the Munsterman/Moore clan? The Brady Bunch of Singapore! But it goes beyond that. Even though we haven't directly chatted - I always know what's going on because of our parents, and I'm thankful for that. I'm not a huge "I'll pray for you," but I'll do what it takes! Thinking of you. - Jillian (you know... Helen and Alan's daughter!)

    ReplyDelete
  2. Hanna- you are amazing and strong and brave! I will keep praying for you, your family and the doctors that you are working with. I will pray for all you have ahead over the next month and that there are good reports to follow. Hugs!!! <3
    Berkeley

    ReplyDelete
  3. Hannah reading your blog did make me cry to hear that such a wonderful and funny person has been diagnose with cancer. You will be in my prayers and I know all the love and support you will be getting from your family and friends especially the Johnsons will help you thro5igh this. Just want to let you know that you are in my thoughts and I only wish you, Jeff, and your boys the best in this situation. Love Joe.

    ReplyDelete
  4. Hanna, I am a colleague of your dad. My wife Adriana and I have been praying for you and yours since the day your Dad told me your news.
    You have a great sense of humor and awesome attitude.
    Just a thought to share with you....God has a perfect purpose for you and your life...in the book of Esther 4:14 She was challenged by her uncle...For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?” So I would say...And who knows but that Hanna has come to her royal position for such a time as this. God bless you and yours.

    ReplyDelete
  5. Be sure to know that you have been in my prayers and daily thoughts. You are an amazing humanbeing! You have strenght you may not even know. Never, never, never quit trying! I am readying my card to you of joyous times we have spent together. How you just "popped in" to our Jesuit Bend home one Thanksgiving/Birthday Party/or other celebration and made our day so much brighter and happier. Could we bottle up some of that pure genius personality of yours? We all have you in our hearts. Love, Aunt Kathy

    ReplyDelete

Post a Comment

Popular posts from this blog

The One I've Been Avoiding Writing

A Broken Phone and a Lot of Kindness - Saying Thank You