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Wednesday, May 9, 2018

Life Before and After

This is me. Happy, healthy, fun loving me. I have a wonderful family, amazing friends, and live in a community of generous, helpful people. I work from home a few hours per week but otherwise I pride myself in raising my children, staying active and healthy, being a good cook, and running an organized household.

I'm my daughter's Daisy Troop cookie mom. Normal and boring as apple pie. I am naive enough to even complain that I have nothing left to blog about because our lives are so easy and uneventful.

And then March 3 happens. Which is the day that lead us down the path to learn that I have brain cancer.

Cancer is scary. Surgery is scary. A new diagnosis and everything that it entails is frightening - but if I stop for a moment and think about why it is scary, and I have, I come to a few conclusions. The fear is in the change.

Will I ever be 'normal' again? Will life return to what I know and love? What can I do to help myself and bring the least impact on myself and my loved ones? For me, this is what the fear boils down to.

I am far from being done with my personal cancer battle. To be perfectly honest, I'm still not  thinking of it as cancer - which sounds crazy - but I prefer to live my day to day with what I know, and take each appointment as it comes. When it becomes a 'battle with cancer' I feel like that starts to define who you are, and I don't really want that.

While that particular aspect of my illness and treatment and how to deal with them is being sorted, I'll go into a little bit of detail regarding the last month. Since I published The Things I Know there has been a lot added to the list of things I know... and don't know.

To recap, on March 3 I had a seizure that lead to a two night stay in the hospital. We found out I have  a brain tumor. On March 8 I had an appointment with the Chairman of Neurosurgery at MD Anderson, a particular neurosurgeon who specializes in deep seeded tumors in eloquent brain regions. Which is where mine is. Have you ever hear of an insular lobe?? Me neither. But now I know a WHOLE LOT about the insular lobe....and it makes me wish I majored in something scientific or medically based.

We chose a surgery date of April 3, which was not intentionally a month to the day after my seizure, but worked out that way since my surgeon performs his long surgeries on Tuesdays. So, here's what we were told....
  • We needed to choose a date soon. If we waited, we were giving the tumor time to grow and while it is a slow grow, the fact that I had a seizure means that my brain was not happy with where the tumor was living and the space it was occupying. 
  • This particular type of tumor, a glioma, is a stray misguided cell that my body failed to flush from my system. It is not genetic. It is not passed to me. It cannot be passed to my kids. That is important.
  • My surgery would be a complicated one due to the blood vessels and region of the brain involved. Not to get too nitty gritty on you here, but there is a major blood supply to the brain that my deep seeded, insular lobe tumor is wrapped around that vessel. So the surgeon needs to systematically pinch off the blood supply and then resect tumor... then allow the blood to flow again... so the rest of my brain can breathe and continue doing it's thing. 
  • I need to do a number of performance tests, all to help assist in my surgery. An MRI. A 2-3 hour long performance test: This is where I answer questions for a few hours and then they have a baseline to judge my performance before vs. after. It was like super high-stakes SATs - I had to remember lists of items, put them in alpha order, move pegs from different holes, draw pictures from memory, etc etc. A functional MRI; I like to think I aced it. They agreed with me when I asked. But I kind of put them on the spot so who knows?!
  • This is the big one: I need an awake craniotomy. That translates to brain surgery, a portion of which (somewhere around 2-4 hours) you are awake to perform speech and motor function. So your head is open. While you're awake. Hannibal-Lector-style. I mean, have you ever heard anything scarier?? Please let me know if you have, because this is the scariest shit I have ever heard. 
Pre-surgery they do a whole lot of tests. Blood tests, CT scans, if I'm honest, I don't even remember what all they did that day, but I left the hospital looking like this with the hole protectors on my face and head. These little guys are the "GPS" for my surgeon. I did an MRI without them, and then an MRI with the little stickers, and this allows the surgeon to see where he is during the surgery in relation to the stickers. It seems so simple, but it worked!

So now I go home, with my husband, parents, in-laws and children and try to get a good night's sleep. Holy cow, for real?! I'm a pretty relaxed individual but the idea of getting a good night's sleep before this kind of surgery is completely unnerving. To be honest, after a month's wait, knowing this was coming, I woke up early Tuesday morning with a determination I have never known before. I was calm, collected, happy, and just plain ready. They told me that anti-anxiety medication was at my disposal but that it may make it harder for them to wake me up during surgery. So I turned down all pre-procedure medication.

Then the surgery happens. I remember clearly saying goodbye to my husband and mom and being wheeled into the surgery room. Then they wake me up. I can't move anything but my hands and feet, but I can talk and feel sensations like pressure and suction. I can hear water splashing around. I have had lots of questions about this particular aspect of my surgery - yes, I remember it. No, it wasn't as bad as I thought. There have been varying reports but I was awake somewhere between 3-4 hours, and no, it didn't feel like that long to me.

Post surgery with my dad
From that point, things just get better. I was a risk for all kinds of things, the most serious being stroke, vision impairment, and loss of function. None of that happens. My husband is by my side virtually the ENTIRE time, sleeping on a blow up mattress on the floor of my hospital room for the duration of my hospital stay - which they told me would be seven nights. I was home after four. I came home on a Saturday, I was walking around the Woodlands Waterway Arts festival on Sunday. While it seems like an odd thing to brag about, I'm pretty proud of the way I rocked that surgery. Credit goes to my amazing surgical team, and my incredible support network including my parents that stayed at a nearby hotel downtown and were with me everyday and my in-laws who held down the fort fantastically at our house along with our great nanny April who hit the ground running and just started a week before the surgery!

Here is my second day home:
Yes, those are staples in my head. A whole lot of staples - Jon estimated 90 of them. 

Me and my amazing Mama. She has taught me how to take cancer by the horns and show it who's boss. 
So now we navigate life after brain surgery. I am still unable to drive (after a seizure you are prohibited from driving for 90 days in the state of TX) and I have a number of appointments that are in downtown Houston, a solid hour from my home. I need to recover and heal. 

I also need to complete 30 days of radiation therapy. 

Radiation was a term that I am familiar with, but until it happens to you or a loved one, it isn't something I considered the logistics of. So for visual assistance, here is a radiation machine. The patient lays on the super-comfortable looking table in the foreground. The big, silver, space aged machine is what delivers the radiation to your desired area.

This is me getting "lined up" for my radiation. There is a personalized, molded mask over my face that clips into the table so that I cannot move my head. Lucky for me, I don't suffer from claustrophobia and while this isn't a particularly comfortable way to lay, it doesn't bother me. I also prefer to be 100% sure that the radiation laser beams are going to their desired location, so bring on the mask, clip me in, I'm secured for take-off. The whole process takes about 10 minutes, and is painless, and especially after a craniotomy, this is a walk in the park. 

After radiation is complete, I will begin chemotherapy. I'm not sure how much time will elapse between the two therapies. I also don't know yet what type/duration/frequency of my specific type of chemo (it seems incredibly naive now, but I didn't know there were different types. There are many many many different types of chemotherapy). So I find myself using the phrase "it's not a sprint, it's a marathon" and I think it's pretty accurate. We have a long way to go. My tumor has been found to be slow growing, and after pathology reports came back it is a specific type that is very responsive to these therapies. While that news is really, really good - we are still a young family with little kids that is working to figure out the best way to handle all of this new, heavy information. 

We are doing well, have lots and lots of support and our kids are fantastic. Thank you to every single person who has sent a card, sent a text, made a meal, entertained our children, prayed, thought of us, flew out to visit, driven any of us somewhere, planted flowers in my front yard (!), did laundry, changed sheets, set up food delivery, or any other assistance we may have needed. I truly could not ask for a better support network, it is vast and generous. You all have been incredible. 

Thank you for reading. Each day as I am able to stay awake a bit more, exercise little by little and return to a bit of normalcy the fear shrinks. We can make a normal out of this completely bonkers situation.  

Thursday, March 29, 2018

The Things I Know

Having a brain tumor has taught me a whole lot about what I don't know. Aside from the obvious things - like the future - here are a few that come to mind:

I don't know that I'm brave. I'm scared like crazy. 

I don't know that I'm courageous. I feel like courage is doing something even though you're afraid, and this doesn't feel like that kind of choice. 

I don't know how to field questions from my children in a confident and comforting way. 

The encouraging part of being forced to face things that I never thought possible is that I've learned that I KNOW a whole lot more than I don't know. Here is what I know:

I know that marrying my husband was the best decision I have ever made.

I know that my children are strong and resilient and curious and silly. They are coping with a whole lot of disruption in an impressive way. I know that we have done a good job as parents making our family feel emotionally supported and loved.

I know that I am not alone. My family, friends, neighbors, casual acquaintances and everyone in between has been helpful and supportive and amazing.  Since March 3rd I have wanted for nothing, had virtually all of my chores done for me, seen so many of my favorite people as they came out to visit (laughed and cried with all of them), received meals and cards and gifts and notes. I appreciate ALL of them, even if I haven't been able to thank everyone personally. My network is vast and there is strength in that. 

I know that I am strong in body, mind and spirit. This situation sucks, but I am going to fight like mad to get back to the normal life that I love so much. 

And I know that these three busy, wild, strong-willed jokers make every difficult, frightening, seemingly impossible step required for recovery worth it. 

So, step-by-step I go, head held high, into the unknown. 

Friday, March 23, 2018

The Tumor Made Me Do It

The early morning of March 3 everything changed forever.

Instead of waking up to a little person asking to watch a show or to a silly baby with a 10 pound overnight diaper or to a day full of softball and soccer and movie birthday parties I woke up to a stranger finding a vein to run an IV into my right arm as we very bumpily rode backward to the hospital.

Instead of waking up in my comfortable bed with my loving husband I was on a stretcher. Instead of nursing a wine-headache from the very fun evening with friends the night before, I was a FALL RISK in the ER. My husband, who has emotions of steel, had the puffy red eyes of someone who has been crying for a long time. I also had no recollection of what happened.

Because instead of all of the things above, Jon had been woken up at 4:15am to his wife seizing in the bed next to him, laying unresponsive (though breathing and with pulse) for an additional 10 minutes while he called 911. He was then tasked with finding a neighbor to wake to watch our children while he calmed our newly turned 7 year old who had woken up in the chaos. Then he got to drive to the hospital. He had the unfortunate luck to remember every single detail.

If you ask me, he had the worse morning.

After a seizure they do lots of tests to figure out the root cause. That day was full of firsts: I had my first CT scan, my first MRI, my first consultation with a neurosurgeon, my first referral to a more specialized neurosurgeon. There are few things in life scarier than a NEUROSURGEON telling you that your neurosurgery case is beyond their comfort level. I've seen lots of Grey's Anatomy - those doctors are always accepting the difficult cases, has TV been lying to me all these years?!

As it turns out I have a brain tumor. I had some very vague, easily dismissed symptoms that now can be attributed to this discovery. I have had a slightly more difficult time sleeping. I wake up with an odd, indescribable scent as if it was a weird smell in a dream. I have had a mild increase in overall anxiety. Nothing that made me think something was wrong. Nothing that has gone on for more than 3 months. If I had Web MD searched these symptoms and it came up with "Brain Tumor" I would have had a good laugh with my friends about how ridiculous some people are about internet searching medical advice.

However, sometimes, it's actually a tumor. I was kinda hoping that this wasn't one of those times.

It has to come out. I love our kids and my family and the life we've built together too much to go any other route. We have chosen the best, most aggressive, most skilled surgeon in the country to make me whole again. Well, not totally whole - there will be an actual hole in my brain where the tumor used to live - but maybe they can fill it in with some rare trivia knowledge? Or some sort of skill that I've always wanted like reading music, or playing the guitar, or sign language? For now I'm content with a tumor-free brain, I'll inquire about the other stuff later.

I'm having brain surgery April 3. One month, to the day, after the scariest day of our lives, we will have the new scariest day of our lives. I trust in the surgeon, the team, the hospital and my support network (which is vast). Don't get me wrong, I'm terrified. I'm scared that my children will not know me as a healthy person. I'm scared that my husband has to take on so many more responsibilities in addition to this heavy burden of illness. I'm scared that our lives will never resume the blissful regularity that gives us so much comfort. But, we walk into this unknown with strength and hope and support and love. And for the time being, we live life enjoying the happy, healthy, "normal" days. Like this:

Sunday, March 27, 2016

Easter 2016

We are not particularly religious people but we do enjoy an Easter celebration that includes an egg hunt and time with friends and family. And if we know anything, we know that our children love an activity - especially if it ends with a basket full of treasures. 

And we have the perfect backyard for a large scale egg hunt! Here are some action shots of the kid crew:
Gretchen in her Texas cowboy attire - pink boots!
Our dapper little man in his Sunday best
Our sweet buddy Rhys. We love him so!!

Everyone on the rock for a picture!!
Silly friends!

The instruction was "give me a mad face!". This is Alex's perfect pouty mad stance. 

The most exciting part of this photograph was that it eventually was our pregnancy announcement. There are FIVE Gills in this picture. One is only 3 months along and living firmly in my belly.
Our little dressed up family
Our lovely friends. It is rare to have friends where each person makes your family happy with their presence.
We are so thankful!

Because it's Texas, on Easter we swim! One of the benefits of living in the hot hot south!! Happy Easter everyone!

Tuesday, March 1, 2016

Gretchen Turns 5!

There are a few ages that bring with them massive change. Five years old is one of those ages. This means that Gretchen will start Real School this fall! Girlfriend is more than ready, and she will no doubt take it by storm!

We decided to celebrate our little firecracker's birthday at a gymnastics place called Maximum which is perfect for large groups and rambunctious children. Considering the number of children in our neighborhood, the kids in her preschool class and wanting to include siblings, we had lots of kids to fit the bill for her party.  

Trampolines make everything better!

Our favorite cake pop maker sent these special from New Jersey to set the Mario theme for Gretchen's birthday. They make the best party favors!!

What could be better than a milkshake and burger on your actual birthday night?!

I love these two buddies!