Saturday, October 27, 2012

A quick(ish) hello.

Hi, it's Katie. After 10 days at the hospital, I am finally back home with my boys, trying to recuperate as best I can. Which involves a lot of sleep and rest...followed by more rest and then some more sleep. Brain surgery is a pretty exhausting experience, it turns out. 

But just wanted to quickly check in since all of this craziness began 24 days ago. 24 days. When everything was "normal" and I was blissfully unaware. sigh. All things considered, we are doing well and spirits are mildly high...somehow...most days. That's partly do to with two positive doctor appointments we had last week, which leads to the next reason for this post: an update on the plan and next steps!

We met with two different neuro-oncologists, both of whom were excellent and had the same opinion. Turns out I have a lot of positives in my favor (if you'd like to know what those things are, here you go: I'm under 40, my tumor was under 6cm, I had one single symptom that showed itself, and lastly there is some genetic marker called an IDH mutation that is apparently a good thing to have when it comes to brain tumors. 4 1/2 out of 5 stars one doctor said (I can't remember what the half star is)). Plus the tumor is a Grade 2, which is good, and rare with my type of tumor, apparently. All of that indicates something not very aggressive. So the recommended course of action is a watch and wait approach (MRI's every 2-3 months) as opposed to any sort of treatment at this time. So thankful for this! I also asked the very scary question: do you ever have patients with tumors like mine who do fairly well for a long, long time, with not much change? The answer was just what I needed to hear. Yes, 20+ years sometimes. Not that anyone can guarantee me that, but still...felt good to hear. And put the hope (and the fight) back in my heart. In fact, let's make it 50 years, okay? Okay. They also both commented on what an amazing job my surgeon did at removing nearly all of the tumor...something, apparently, that was not easy to do. So thankful that the ambulance took me to Roosevelt Hospital where Dr. Mandigo, one of the best, happened to be on call. Quite providential. 

All the same, my faith and life have never been so tested. I absolutely believe that God is with me and strongly believe in the power of prayer. I don't know who reads this blog, have no idea how many, but I would so appreciate your prayers throughout this journey. And prayers for my little family. 

And speaking of family, I feel the need to shout from the rooftops just how amazing mine is. My husband, Dan....oh boy. How do I even begin to talk about what a rock/gift/angel he's been? And all that he's done for me and how much he's supported me? This post would turn into a lengthy novel if I attempted to write it all down. This trial has strengthened and deepened our bond in ways I didn't know were possible and I've been repeatedly blown away by his heart, character and strength throughout all of this. And my sweet baby boy who is absolutely exploding developmentally lately and has turned into the funniest kiddo ever. Joy just spills out of him and he makes me laugh every single day. And my mom and George and my dad and Dan's mom, all of whom dropped everything at a moment's notice to drive and fly in to be by my side and help out with Miles and run our household...sleeping on our couch and air mattresses (not ideal or all that comfortable)...cooking and doing dishes and cleaning and going grocery shopping and going to doctor's appointments with us and the list goes on. These people are the salt of the earth and Dan and I couldn't have gotten through this without them. And all of our other family members who have supported us and prayed and loved us from afar. And our wonderful friends who have brought food and presents and cards and flowers and hugs and funny stories. And even strangers, friends of friends, who have reached out to us! I am absolutely blown away by the support. And if this thing -- this random sucky thing that has happened to me -- has shown and taught me anything, it's that I am one very blessed and well-loved girl.  

Oh, and by the way, they didn't have to shave my head. Not even a little bit. Isn't that amazing? 
^ moments before surgery 
^ 3 weeks post surgery. see? all my hair! 
just a 10+ inch well-hidden scar.
and the cutest boys ever.

Maybe next post I can muster up the physical strength to write out the whole story...what happened and led me to the hospital in the first place, etc. Would probably be therapeutic for me. But for now, signing off...

p.s. it took me days to finish this post! the smallest things now take the greatest effort. sigh. thinking about signing up for a twitter account so i can blast out little snippets more quickly. not that i know anything about twitter. but will keep you posted. 

6 comments:

Anonymous said...

You are an amazing woman and it makes me so very happy and teary eyed with joy that you are doing well. Keep it up! You are so strong and an inspiration to many! Love to you and your family.

Kelley Horton

Kiki said...

Katie, just wanted to let you know that I've enjoyed catching up a bit with you on your blog and that my youngest, Lincoln, and I have been praying for you daily. Well, mostly daily. :) Hope you are well and that God continues to be gracious to you and your family!

harlem said...

Katie,
I caught the facebook posts about what you've been going through and have followed the updates. So glad to hear you've received good & encouraging news from the doctors. This was an impressive blog post for someone recovering from brain surgery! You should be proud. I enjoyed reading a few of your other posts and was especially touched by the story of meeting Dan. It reminded me so much of the first date with my husband. You and your family are in my thoughts and prayers and though we've only met a handful of times, as a fellow New Yorker, if you ever need anything please reach out to me! monallison@gmail.com
Monica

That City Girl said...

Thanks so much, girls. I am so touched by each of your comments. Means a lot.
xo

Anonymous said...

The fabulous photo of your family made me tear up with joy! My heart has been heavy with this news and you have been in my thoughts daily. I am happy to hear your voice through this and am encouraged by your post. Prayers. Anne

Kristal Shoffeitt said...

You are amazing!!! I am so proud to have known you and been blessed by who you are.... Blessing my friend you and your sweet boys are in my prayers : Kristal

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