Other Pages of Interest

Wednesday, September 19, 2018

End of An Era

Tomorrow our big little guy turns five years old. FIVE. In my mind this is the age that begins Big Kid. In that spirit, when a new stage begins, something must come to an end, and I think we're ready to say farewell to #AlexHatesEverything.

In 2016, our sweet, sensitive, cuddly 2 year old was still pretty quiet most of the time and a real joy to be around. But there were times - when something seemingly minor would happen - and Alex would melt into a teary, drooling mess of unclear words mixed with yell-crying. Often, this was followed by long periods of pouting, anger and frustration. This is not new behavior, many parents have the same struggle, but my answer to this was to start photographing the tantrums and allowing myself a little comic release. So in January 2017, #AlexHatesEverything was born.

Over the last two years we have seen an incredible maturing of our little guy. He is now a big brother, with a full, generously used vocabulary who has his own, measured way of doing things. His tantrums have virtually disappeared, being replaced by more of a side-eye look and crossed arms. Honestly, the hashtag photos were helpful in showing Alex how silly he looked when he lost his cool. And for anyone who has seen these photos and thought they were mean or unfair, know that no one has laughed harder than Alex while looking at himself losing his mind over a sandwich or the wrong bowl or because it was time to go home. Not to mention how cathartic for mom - who often time had to spend an hour coaxing her toddler while chasing down her 4/5 year old while also (at times) very pregnant.

I want these photos to be captured in our family records to look back on, as we do with most of the items in this blog. So here's to the end of an era. Our little boy spent his last day as a 4 year old happy, reasonable and very excited for his upcoming birthDAY and celebration over the weekend.

Enjoy #AlexHatesEverything one more time.... and stay tuned.... I feel in my bones that there may be a future for #GrahamHatesEverything.

Alex hates getting only one chocolate granola bar. 

Alex hates finishing his sandwich. 

Alex hates listening to Sirius/XM 90s on 9.

I call this series "Alex hates Fridays".

Alex hates getting the mail. 

Alex hates rain. 

Don't you DARE split the last cupcake. Alex hates half desserts.  

Alex hates "just coming right home" after gymnastics. 

Ales hates when you fill his kid-sized grocery cart with salad. 

Alex hates it when he can't ride ALL the scooters in the neighborhood. 

Alex hates being told to get a Kleenex [and not use his shirt]. 

Add caption

Alex hates getting "only two things" for lunch. 

Alex hates half-marathons

Alex hates all fruits except watermelon. Which is one of the few we don't have on hand.

Alex hates leaving Pump It Up to go to Chick-Fil-A for lunch. It's a tough life. 

Alex hates dinnertime.

Alex hates not helping our neighbors paint.

Alex hates Easter parties. 

Alex hates when last night's babysitter is gone in the morning. 

Alex hates vineyards

Alex hates half-full snack bowls. "I don't want 11! I want like 100 animal crackers!"

Alex hates the wide turn radius of his new car

Alex hates not impulse-purchasing toys on Christmas Eve

Alex hates jokes

Alex hates small bowls

Alex hates "Baby Painting"

Alex hates only one snack after soccer

Alex Hates Water Safety
Alex Hates Independance
Alex hates Family Photo Sessions

Friday, August 24, 2018

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.

Sunday, July 15, 2018

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.

Thursday, July 12, 2018

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!