Anniversaries.

Well, October 3rd came and went. As did October 5th, the one year anniversary of my brain surgery. It was both momentous and not at the same time. Event wise, not. In terms of emotion, very. I took some time to allow myself to go back to those moments...the moments leading up to the terrifying "episode" that lead me to the hospital (my momentary loss of speech in which I thought I was having a stroke right there in front of my 13 month old little boy), to the news received about the tumor after my initial MRI, and then the prep for surgery. I read through messages from friends and tearfully talked through the events with Dan. It is interesting that, despite the realness of it all, still seared in my mind so clearly, there are big, huge chunks that are missing, too. Certainly after the surgery thanks to the copious amounts of pain meds I was on! But also in the 40 hours between the start of it all and my surgery. It is like I was in a daze, cocooned in self-preservation, not fully understanding what was happening. That is probably how I got through the surgery in the first place. If I was thinking clearly, I would have been absolutely petrified! Instead I was a bit matter of fact about it all. It was hard to revisit the emotions but good, I think. It is always good to acknowledge your emotions and I think I needed to create some space to feel them again because I am good at burying things way, way down. But buried feelings have a way of seeping out of the cracks at the most inopportune times, you know? I would still like to to write out the whole story one day, as I mentioned a year ago on this blog. As I said then, it would probably be therapeutic for me. We will see...

And speaking of anniversaries, and on a much happier note, another one passed recently, as well. Dan and I celebrated four years of marriage on September 12th. It was much more fun to walk down memory lane for that one! And up next (tomorrow!!) -- October 13th, the anniversary of our very first date SIX years ago! That is one of my favorite nights to think about. The beginning of it all, covered in the possibility of love and twinkly New York magic....sigh....you can read all about it here :)   

Warning: pictures of my brain ahead.

(just in case pictures of brains and/or tumors make you squeamish)! 

I've been trying to finish this post for days, but some medication issues have made my brain fuzzy, making writing a bit difficult. 

Anyway, the news on the MRI front is pretty good! This was my first MRI since I left the hospital in October so I wasn't sure what to expect. The surgeon initially thought she got about 90% of the tumor (which was upsetting to hear, but considering how difficult it is to remove tumors from brains, especially in the very precarious location mine was in, it was actually a positive thing). I had a MRI a few days after the surgery, but it was hard to see what was going on in that scan because there was so much swelling, fluid, etc. But word on the street back then was that perhaps she got more than she thought, maybe even everything visible to the naked eye. (Fun fact: It is impossible to remove ALL of a brain tumor because there are always cells left behind (or maybe that's just my type of tumor? I don't actually remember now). My surgeon described it as a ball of sand -- you can remove the clump but not all of the grains. That is why they don't use the word 'cure' or 'remission' in brain cancer, but only 'control'. A very difficult thing to come to terms with). So we held on to this shred hope that she had gotten nearly all of it aside from the grains.

Last Monday's MRI scan showed us what we are really working with now -- the baseline -- now that the swelling has gone down. My oncologist's exact words were: "Everything is perfectly stable," and we breathed a sigh of relief. But when he first brought up the picture of the new scan, my heart sank a little. I still saw tumor, when I was expecting, or at least hoping, to see nothing at all. But he assured me again that the surgeon did an incredible job, there was no indication that anything had changed or grown, and overall, he is still very positive about everything, feeling strongly that what we have here is a very slow-growing, low-grade cancerous tumor that probably won't do anything for a long time. So still no treatment for me. Thank God. 

Here's a picture of his computer screen: 

This is the before (pictured left) and after (pictured right) -- 'before' being the initial tumor that they found (I know, scary) and 'after' being the most recent scan. The black hole is empty space after the tumor was removed and the white, shadowy outer edge is the sliver of leftover tumor. All things considered, I am grateful. Sure, I'd like to see nothing at all in that after shot, but now I have a picture to work with. And when I am eating my heaping helpings of fresh food everyday (garlic, cabbage, onions, broccoli, etc. -- all very potent cancer-fighting foods) -- I can now picture what's there and what I am fighting against. I like to imagine the different foods and spices like big, hungry Pac-Mans, chomping through all of those bad cells! 

And now I know what to pray against, as well. And you can join me! (please? :) That little 'peel' is the sliver we are praying away, people! I would be so very thankful for your prayers.  

Weird to be talking about brains and tumors and MRIs on my blog now, isn't it? Weird. Life is unpredictable and hard. 

xo

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. 

Update...

Hi, Dan again. Have an update to share. Last week was tough. We got the results of the pathology - not exactly what we were hoping, but it could have been far worse. The tumor was a "low grade astrocytoma" - not benign but a low grade cancer that we'll have to treat. It's technically a grade 2, but brain tumors have a completely different scale than what you normally hear. This one is at the low end (which is good). Factors are definitely in her favor (age, size of tumor, no visible signs of remaining tumor) and they make any stats irrelevant. Please keep her in your prayers. We're on to the next chapter (recovery, treatment). She is home now and we're working on her full recovery.

World = Upside Down

So first, this is a brief guest blog (from Katie's husband Dan). I've got some difficult news to share....these last few days have been the hardest of our lives. Last Wednesday, I got a scary call from Katie that just a few minutes beforehand, she was trying to speak to Miles and no words came out - just gibborish. Then she tried to text me, and....more of the same. So she called 911 and by the time I got home, the EMT's were ready to take her in to the hospital.

The initial doctors gave us reassurances that it was probably migraine-related, but they did an MRI for precautionary reasons. Then we got the devastating news that she had a mass in her brain. This was that kind of out-of-the-blue experience that we thought only happens in the movies. You tend to not even comprehend that these things can happen to you.

There were some good indicators that it was toward the benign end of the scale, but they can never really know until they remove it and do the full labwork. So they took her into surgery (brain surgery!) early on Friday morning. BTW, it took me the longest time to be able to use the word tumor. I think I was in partial denial that 'my wife had a brain tumor' - even writing that now is still difficult. Just a few days ago, our lives were completely normal.

Anyway, she was simply awesome. To make sure they weren't doing damage to her speech during surgery, they had to do an awake craniotomy. You can probably figure out what that means (awake + cranium + your imagination!!). They removed the vast majority of the tumor, but they had to stop operating when her speech was affected. She's been recovering in the ICU, and they just moved her to a normal room today. Believe it or not, she might be home tomorrow.

The next step is getting pathology results - which will determine what happens from here - but will be at least a few more days.

The outpouring of people praying for Katie has been astounding. I can't express how thankful we are. Please pray for her continued recovery and a benign result. And.......she'll be back soon!