Random Acts of Living

Some things that have been happening between appointments – one of which happens today – to prove that I’m still practicing living and finding joy every day.

Taking a sauna with family, sharing stories and ideas of the world.

Trying to capture one of the many strange/cute things your pets are doing and missing it EVERY TIME. (Can’t go viral with that kind of timing – must work on my video quick draw)

Watching my son push every one of my daughter’s buttons and almost joyfully watch the reaction.

Seeing my daughter attempt to not make mountains out of mole hills and fail (thankfully) to kill her brother – who’s pushed yet one more button. Both of these things drive me mad, but they both do it so well – push buttons and react with explosive passion – that it’s hard not to watch with interest how they solve it.

Regretting the day we got sucked into the Elf on a Shelf trend as we dig him out of hiding and desperately attempt to find new, creative and even funny ways to move him around each night. And sadly watch the ‘Elf suggested’ Acts of Kindness idea we tried meet with only minor success.

Listening to my son learn to play Rudolph the Red-nosed Reindeer and We Wish You a Merry Christmas on his guitar – singing along to ensure he’s getting the notes right.

Helping my daughter to learn about her Finnish Heritage. Listening as she learns facts about birth dates, marriage dates, tales of travels from Finland to America from her grandfather. Seeing her get more excited as she puts it all into a story and prepares to share her scrapbook of old family photos.

Listening to the impromptu jam session my husband begins with his new cajon as my son ‘noodles’ around on the piano.

Seeing my daughter given more responsibility at school by being asked to help with the annual kindergarten winter show.

Going on a date with my husband to have dinner and see a movie, in an actual movie theater. Having adult conversations like other adults do.

Forgetting I bought something for a Christmas gift until it arrives at my door.

Feeling slightly guilty that I’m doing all of my shopping online since 1. I’m still not driving and 2. I hate malls, stores, and parking at Christmas time.

Realizing that the knitting project you hoped to finish isn’t going to get finished in time. Letting it go and coming up with a plan B without stress or worry.

Spending more time living life and less time in a doctor’s office and worrying about what’s going on in my brain. And just every once in a while having that ‘what if it all changes tomorrow?’ thought.

Wishes For My Daughter

My daughter turned 10 years old this week. It feels like a big milestone, she’s more independent, more mature, more attitude-prone.

I’d really like to be around for the next decade, or two, or three of her life to see her reach those milestones every child (because they’re always YOUR child) reaches on their journey in the world. I’d like to be there for the moments that she smiles bigger than ever, her heart bursting with joy.  I’d like to be there for the moments when she needs a mother more than anything – to tell me her fears, secrets, dreams, and wishes – just to hold her hand or hug her or encourage her to carry on because ‘this too, shall pass.’ I’d trade anything to just be there. With any luck, I will be.

She’ll make new friends and lose old friends, discovering what true friendship means and how valuable friends are in life. She’ll have first crushes, first boyfriends and have her heart soar and then broken. She’ll love unabashedly and find someone to love her unabashedly back. She’ll have adventures and mis-adventures. She’ll make mistakes and learn from most of them. She’ll read a million books and get lost in every one, going back to her favorites when she needs an escape. She’ll create – words, art, music – whatever inspires her soul. She’ll care for others and hopefully let others care for her. She’ll discover who she is as a person in this world, hopefully always being true to herself and celebrating her uniqueness.

Sometimes we disagree. Sometimes she drives me to tears. Sometimes she reminds me too much of myself. Sometimes I feel like a competent parent and other times a total failure. But she’s beautiful and strong-willed and I love her so much my heart will burst. No one said it was easy – parenting is hard and messy and a series of trial and error, but it’s the greatest job in the world.

I wish that I could easily find the words to teach her the lessons I hope she’ll learn along the way to becoming the strong, confident, compassionate, and loving woman I know she’ll be. I feel a little fraudulent sharing ‘words of wisdom’ using the words of others, but sometimes others find the right words for the wishes and thoughts that are hiding in my heart. One day soon (a dangerous promise in the world of GBM), I’ll start that journal I bought for her and use my own words – hopefully I’ll have enough courage to find them.

There are so many lessons to teach a daughter in a lifetime, but here are some that come to mind as she enters her second decade:

You will always be beautiful, inside and out – believe that you are and know that beauty comes from within

Live in a way that if anyone speaks badly of you, no one would believe it

Treat everyone with kindness and respect, even those who are rude to you – not because they are nice, but because you are

Don’t change so people will like you, be yourself and right people will love the real you

Creativity takes courage – never stop being courageous

Expect nothing and appreciate everything

Nobody’s perfect, accept others for who they are, the imperfections make them more interesting

Think too much and you’ll create a problem that wasn’t even there in the first place

Close your eyes, clear your heart, and let it go

If ever there is tomorrow when we’re not together…there is something you must always remember. You are braver than you believe, stronger than you seem and smarter than you think, but the most important thing is even if we’re apart…I’ll always be with you.



Day 5 – New Dosage

Well, here we are on day 5 of my new lower dose of Temodar. I’ve survived to fight another day.

I’ve had only moments of nausea. I stayed on top of my anti-nausea meds, but it’s not clear how badly I needed them. I ate and cooked meals for my family with little to no difficulty. I planned and shopped for easy dinners to make sure I wasn’t trying to figure out what to cook while I had no energy or felt like hurling at the smell of any food within arms reach. This meant that we ate less than whole foods this week (unless you consider vegan pigs-in-a-blanket whole, non-processed food), but we’ll make up for it next week.

I am tired. I feel like I need about 3 hours more sleep each day. But honestly, it’s not nearly as bad as with the larger dose. I’ve been able to drive my kids to and from camp and other activities. I ran a few errands. I went to yoga class – with the inspiring older ladies and gentlemen who continue to show their aging, more fragile bodies that they’re still in charge, dammit. We’ll see how I feel this afternoon and tomorrow as the cumulative effect settles in.

I think I can live with this dose quite easily, though. I don’t think it would stop me from taking a trip – as long as it’s not to run a marathon or backpack into the Sierras. I can still live my life and care for my family. I am less dependent on others, so they can continue to live their lives as well. I feel more like myself, even if it’s a more tired, chemo-brained version of myself.

We’ll see what this lower dose does to my platelets and whether it continues to help keep the beast at bay. Fingers crossed.