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.