Did You Ever Think Life Was Gonna Be This Way?

...and you know what that means? I can't wait for this month to be OVER. Thankfully, my husband's birthday is nestled into the middle of the month, which at least gives me something to look forward to, but yeah, April can just get the f*** out. I was diagnosed with stage four cancer in April 2013. In April 2014, I had recently discovered that I was no longer NED and was taking a truly heinous mix of Irinotecan and Erbitux, which gave me terrible acne-like blemishes all over my head, scalp, neck and chest and also made my hair shed so much that I had to cut most of it off and it still hasn't grown back to my liking! I wound up in the hospital in April 2015 and then went home trailing my new oxygen sidekick, who stuck around for about 10 months. This month...this month my platelets have decided to quit cooperating entirely - which means I can't take my chemo! - and so Wells (my oncologist) wants me to have a partial splenic embolization in about 5 weeks. This means they...

If you're friends with me on Facebook - or in real life! - then you know that I spent last week in Washington, DC with FightCRC, an advocacy group that works to raise awareness, increase screenings, and raise funds for colorectal cancer research. I joined the group last fall, when they generously allowed me to become one of their research advocates (RATS), and I've been in love with them and the work that they do ever since; I'm truly honored to be a part of the organization. Beauty This year, I attended FightCRC's tenth annual Call on Congress event, where survivors, caregivers, loved ones, and activists get together for training and then take to Capitol Hill for a day of meetings with Congressional representatives, urging them to pass bills and support government funding that goes towards age-appropriate screening efforts as well as research and development efforts that help create more treatment options for patients and that will, someday, make this dreadful cancer h...

There's something to be said for safety, especially when you've been living in a state of total uncertainty for almost three years. Im not talking about me, this time. I know my safe spaces - I can retreat into a book, into a couple of glasses of wine, into coloring or online card games or knitting. I can take a long bubble bath and pretend the whole time that I am just living the life of a rich housewife.  But safe spaces aren't as accessible for my children. Oftentimes, they don't even realize they're looking for one.  Even with that in mind, mydaughter, I think, has fared better. She knows the details of my illness, and she knows how to duck and cover, whether that be in the library or with a teacher or merely by bouncing her ever present purple ball in the basement or the backyard. But for F, it's so much harder. Here's a kid who was told his mama had advanced cancer just a few weeks after he turned four. In other words, it has been the foundation and ba...

It's the holly-dazed season once again, and as usual, it really snuck up on me. I feel like I am still considering what I should carve on my Halloween pumpkin...but bam! There are only two more weekends before Christmas! How can this be? The holidays are always a hectic time of year for me (join the club, right?) - although usually it's because I'm working and there are finals to prep and grade and next semester's courses waiting for finishing touches. But here I am, on medical leave, and this year is just as crazy as the last. Thanksgiving, in fact, was even a bit nuttier than usual, because we had most of my husband's family here for the holiday! It was a full, full house - 12 people sleeping here in our 3 bedroom townhouse - but we threw the kids into the basement rec room and the rest of it worked out well (with special thanks to our neighbors, who were away and lent us their guest room). With such a big guest list, I had lots of great plans for decoratin...

I felt like a lab rat this week...and then I ended up becoming one! Pretty exciting stuff, really. Last we met, you'll remember, I was moaning and groaning about nausea induced by Xeloda, my oral chemo drug. Sadly for me, that situation continued to deteriorate, and by the end of the day on Monday, I had vomited at least 5 times, despite multiple doses of anti-nausea medicine. My onocologist, bless him, answers my emails at all hours, and so at some point on Monday, he said to take a few days off from my Xeloda and come into the clinic on Tuesday if I needed fluids. At 1 in the morning, I send a pathetic little email to my team and said, yes, please! to the fluids...and to another, stronger anti-nausea drug.  When I roused myself on Tuesday morning, my oncologist's nurse, Roxanne, who is truly one of the most efficient human beings I've ever met, had already sent me a note telling me that I had a chair ready to go at the infusion clinic for fluids and Kytril (the anti-na...

The last few months have gone like this: bloodwork, discover platelets are too low for chemo, take N-plate to boost platelets, repeat weekly; get Avastin infusion every three weeks; pack, pack, pack, pack, and pack some more due to impending move; listen to husband warn that something will go wrong with the move; keep packing. Read some work from my honors students. Pack. Stand around in dismay when husband's Cassandra-ing becomes reality, then breathe a sigh of relief when it gets worked out. Repeat twice more. Move! Unpack, unpack, unpack, unpack, and keep unpacking. Discover both cars don't fit into the garage at the same time; feel secretly happy because I hate my car; trade in car. Realize all the moving wore me out; sleep a lot.  Watch daughter fall in love with acting, her new school, and her teacher (not necessarily in that order); rejoice when she makes new friends. Watch son also fall in love with his teacher, listen with glee as he comes home with lots of new informa...

The kids start classes tomorrow at a new school. They are VERY excited, and so are we, because their new school is even closer than their old school and it also has an excellent reputation - and an awesome playground! They're also a little nervous, especially our fourth grader, because, well, it's a new school, and they don't know very many people there.  Me, I'm a lot nervous. There's some anxiety, of course, about them starting at a new school and hoping that we made the right decision to move them and that they make friends quickly and like their teachers and so on. But mostly I'm nervous because we don't know any families or teachers or administrators at the new school, and so now I have to figure out whether and how to share the news of my health status with various people. The kids' teachers need to know, in case there's an emergency and I wind up in the hospital or something, so that they'll have context if the kids are upset or perfo...