It's Not a Sprint, It's a... Hamster Wheel?

One round of chemotherapy down. Which means that we get to spend another full day getting testing done at MD Anderson in Houston, and meet with my oncologist to discuss course of treatment. And just when I think I have a handle on my expectations of this routine, I realize that I know nothing.

My cancer has no cure. The expectation is that it will never go away. This is not pessimism, it is realism, the remaining tumor that I have in my head is something I will live with forever. The hope here is that someone smarter than me figures out how to fix it. That would be really great.

This fact is something that me, my husband and our close family have had to learn, and digest, but is a difficult fact to broadcast to everyone who is lovingly cheering me on. Our collective idea about cancer is that we "fight it" until we "beat it", and phrases like "show cancer who's boss" or "kick cancer's a$$" are what we use to help encourage those in the fight. This is where I found myself struggling yesterday. I WANT to show cancer who is boss. I'm doing EVERYTHING I can to fight it. I'm willingly taking poison for the next seven months to kick it's a$$. But at the end of the day, the best possible news is - still there, no change.

This is what triggered my tearful drive home on Tuesday, after a full day of appointments and waiting and results. I was expecting some good news. My realization is that the news categories we are working with are BAD news and NEWS. We're not in a position where there is a whole lot of GOOD news. Don't get me wrong, the news we got was positive - I'm tolerating the chemotherapy relatively well, the tumor remains look the same as in previous months, the molecular structure "type" of tumor hasn't changed, it's hasn't grown or spread. This is the news. It's not bad, but it's not in the "I'm beating it!" category that feels like we're making good progress.

The most important men in my life, my husband and my dad, put it in the best context for me to wrap my head around. This is a maintenance disease. Similar to high blood pressure or diabetes, it's something I will monitor forever, and when there is no change, it's good news.

I have frequently used the phrase, "This isn't a sprint, it's a marathon" to explain that we will need help and support for a very long time. I'm learning now that this is a flawed analogy. It's true, this isn't a sprint. But it's not a marathon either. A marathon is incredibly long, but it has a finish line. Unfortunately, I'm running a race that at the end, I just keep running. Finish surgery and start radiation. Finish radiation and start chemo. Start chemo and, well, I don't know yet.... but I'm going to keep running.

I Don't Belong Here

My last illness-related post was titled: "Life Before and After". The last few months has quickly reminded me that there will be lots and lots of "afters". After diagnosis, after surgery, after radiation. The latest installment is chemotherapy, and I am in my last days of the 'before', starting Tuesday I am a chemotherapy patient.

I got my license back on June 3. My 30 days of radiation concluded on June 4. On June 5, I turned 37 years old. June was a pretty decent month.

We knew that after radiation, I would be recommended to complete a regiment of chemotherapy. I learned in late June that this regiment would be a 6 week cycle consisting of two different oral medications and one medication administered twice via infusion.

And this 6-week cycle repeats a total of six times. SIX. So 36 weeks of chemotherapy. Yipe.

Some of the bubbles to watch while you wait.

MD Anderson is an amazing facility. Everyone that works there is pleasant, joyful even, and the cutting edge work they are doing is incredible. That being said, as I sit in the waiting rooms - so many waiting rooms - watching the fish, or the bubbles or just watching the other people who all have their own version of my white patient bracelet, all I can think is - I don't belong here. My husband and I hold hands as we walk the halls from elevator to elevator, behind countless other couples doing the exact same thing. That makes sense. We're in this together. We just aren't 'supposed' to be in this yet. According to the average age of other couples at MDA, we are about 30 years premature in this horrible journey.

We returned to MDA last week to repeat testing to ensure there are no major mental deficits after my surgery, conduct a new 'baseline' MRI and learn the specifics of my next treatment.

This is my brain. This is my brain after surgery.

My MRI looks as good as it can, lots of tumor is gone, much of the remaining area could be scar tissue or swelling, the doctors that know what they're looking at are pleased. It is a strange thing, looking at a picture of your head with a huge hole where there used to be brain and being told its a good thing, all is well, everything went as well as possible. But the thing is, my next 9 months will be spent getting blood work done each week, having MRIs every 6 weeks and taking very potent drugs in pill form and intravenously. My diet needs to be altered (no fermented foods including cheese, soy sauce, cured meats, alcohol, and lots of other random things - but CHEESE!! And WINE!!!), I will probably be super tired, potentially nauseated, and lots of other, less common side effects. I'm hoping for the best - and doing my best to prepare for the worst.

I'm pretty scared. I am back in the anticipatory wait-for-what-comes-next chair and this time it will be a much longer ride from when the Before becomes the After.

Wish me luck.

Virginia Vacation 2018

We made it to Virginia! Despite all of the uncertainty of this year, we were thrilled to be able to continue our annual tradition of escaping the Texas heat to enjoy the Virginia heat. This vacation came at the sweet spot between my FINAL DAY of radiation and BEFORE I needed to return to MD Anderson for an MRI and chemotherapy instructions. It was a vacation in many forms - and allowed me to pretend I'm not sick for awhile.

Our first destination was the Northern Neck at my parent's lovely river estate house. I flew alone with the kids and was joined by my brother, sister-in-law, their baby bump and two enormous golden retrievers for the first couple of nights. Then we were additionally joined by our former neighbor/great friend Jenn who traveled alone with her three children to spend a few nights with us on the water. It was a blast! 

For the first time in months I broke out my nice camera to get some s'more-making photos. 

Grammy was the keeper of the sweets - which was a good job considering my kids would eat the entire bag of marshmallows if allowed. 

Alex approves! He loves s'mores!

Look at how happy my mom is! It's been a long time since I wrote about it, but she is also going through a persistent cancer struggle of her own. After fighting her cancer four times, four different ways over the course of four years, she came to Houston this year to pursue treatment at MD Anderson. This treatment was the most cutting-edge, technologically advanced treatment available and took her from having detectable tumors to being completely cancer-free in 30 days. It was a horrific 30 days, with continuing fatigue and other lingering side-effects, but here she is 2.5 months post-treatment hosting multiple families with lots of little, energetic children, and making s'mores on a fire pit. I call that a win!

Here's our little (more accurately, young. He's not exactly little...) firecracker. He doesn't sit still, he doesn't play gently, and he is one of the cutest little ones I've ever come across. We are lucky that my parents had a long training exercise with our kids over the last few months so that they knew exactly what they were getting into with our visit.

Gretchen and Alex had a blast with their buddy Henry. He holds borderline celebrity status in our house. 

Then we had the good fortune of being in town for my brother and sister-in-law's baby shower! It was such a joy meeting their friends, and celebrating our future niece! Yes, that golden retriever was on their baby registry. Yes, it was enormous. Yes, I thought it was a bit creepy. But the kids ADORED it! We had lots of fun staying in Richmond at my brother's lovely home with his family. 

After the shower weekend, we pivoted and spent the next week with Jon's family in another part of Virginia. What a beautiful state that can have some many lovely destinations! 

My mother-in-law arranged for a family photography session at the end of our visit, the photos were beautifully done! This series was my favorite - both because our family photo is great and because a few seconds later Alex decided he was mad and didn't want to participate anymore. It was classic.

We took a tour of the Caverns at Natural Bridge and got to see some beautiful, underground formations. The kids really enjoyed it - especially the part where they turned out the lights (to demonstrate what the first cave explorers experienced) and Alex's Star Wars sweatshirt glowed like the sun.

Lightening bug capturing was another huge hit! They stayed alive and glowed for a few nights!

We spent the 4th of July in Lexington, VA and enjoyed their town bike parade (Halle and Alex had lots of fun even if their faces don't show it).  We had a great time enjoying every single person in our immediate families - I can't remember the last time we saw EVERYONE in such a short period of time! This was truly a vacation from home, and from reality - I was able to nap almost every day, our kids had fun day after fun day for a full two weeks and I had lots and lots of extra hands to help shoulder the responsibility of life!

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.  

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.