I Got A Feeling That Today’s Gonna Be A Good Day

17 05 2018


Good days are amazingly good!  I do all the things; driving with the music on and the windows down; grocery and pharmacy; writing and lunch meeting; pedicure and an evening drive for a vanilla cone with candy sprinkles.  There aren’t enough hours in the good days – I want to go to the Zoo, to Franklin Park Conservatory, to the Short North galleries, to the Art Museum, to hike Highbanks…maybe tomorrow.  Regardless, today was glorious.





Silver Linings

15 05 2018

 

When I married Bill, I told him I was game to move anywhere except California or Cleveland; I didn’t like either of those places.  Fast forward to 2002; I received my first brain tumor diagnosis and started researching where the best doctors and facilities working with my diagnosis were located.  I would have gone anywhere in the US, but I ended up only needing to travel a couple of hours north – to Cleveland.  I don’t know how many trips I’ve made up there over the years (it’s a lot) and in the gaps between appointments, tests, and procedures I’ve come to love Cleveland.  There are wonderful museums, world-famous performance venues, Cultural Gardens, waterfront, amazing architecture (especially the old churches,) West Side Market, and Little Italy with one of my very favorite restaraunts; Guarino’s.  

If I’d been given a vote, I’d never pick a brain tumor.  But, since I don’t get to choose, I’ve discovered that if I’m willing to look, there really are silver linings hidden within the storm clouds, balancing the familiar unpleasantness with little nuggets of unexpected beauty.





Know when to hold ’em, know when to fold ’em

9 05 2018


Before I had my first brain tumor diagnosis, my assumption would have been that a brain tumor would be a crisis kind of health event, and it frequently does reach that point.  But the reality is many of us live with a brain tumor over a long period of time.  It is a marathon, not a sprint.  Managing symptoms is a process and there are windows of time where there simply is no “powering through.” Sometimes, in the ongoing negotiation with the disease, the brain tumor wins the day.  Hoping for a better hand tomorrow.





With A Little Help From My Friends

8 05 2018

 

Friends – the ones who are more concerned for you than annoyed with you for cancelling plans, again, because you’re just too sick today. The ones who offer to pick you up and drop you off so you don’t have to drive, because they know driving is hard for you. The ones who suggest a spot in the shade instead of the sun, even though they love the sun, because they know bright light hurts you. The ones who see your fear, discouragement, and uncertainty and simply help you carry it, not wave it around for the rest of the world to view. If you find yourself, on some future day, the reluctant owner of a brain tumor, more than doctors, medicines, therapies, or treatments you are going to want to have this kind of friend beside you on the journey.





Brain Freeze – Part 2

5 05 2018

  

In my previous post I shared my affinity for ice on the outside of my head, but a while back I discovered the wonders of ice on the inside of my head!  Remember when you were a kid, sucking your frozen slushie through that staw as fast as you could, and BAM!  pain shoots up through the top of your skull?  Yeah, the dreaded brain freeze.  But, when you’ve got chronic, intractable head pain, that same brain freeze actually gives a few minutes of pain relief.  I don’t know how, maybe a temporary short-circuit where the pain signals get crossed up arguing over who has dibs on the pain pathway, whatever – it works.  There is one place in town that has one flavor of caffiene-free, sugar-free slushie, they see a lot of me.





Brain, On-the-Rocks

3 05 2018

 
Day two and I’m already second-guessing my decision to share more personally during Brain Tumor Awareness Month. My natural inclination is always toward more privacy, not less, but mostly I’m worried that my posts will sound like whining, and that is not at all my objective. I’m sharing because I can, while many, many more cannot. 

 I can still work, see, access resources, walk, hear, learn, communicate; live. That makes me one of the very fortunate. I interact regularly with others in the brain tumor community who would give every possession they have to be living my reality instead of the one they must navigate. So because I can, and they can’t, I’ll share pieces of our story in the hopes that greater awareness will move treatment, resources, and prevention forward. Thanks for listening, and hopefully seeing a place where you can advocate for the 700,000 Americans living with a brain tumor. 

Living with a brain tumor is a little like having a really self-absorbed, uninvited house-guest who refuses to leave. Once they’re in, there is no way to add-on space (brain real estate is a tightly closed market) so if you can’t kick them out, you spend a lot of time trying to manage them. 

 At some point, pretty much every day/night, I’ll need to ice my brain to turn down the pain signaling a bit. The top drawer of my freezer is a rather impressive collection of ice-hats, packs, and sleeves to wear, drape, wrap, or insert into pillows. The community shares new ice discoveries, we are always looking for something that’s just a little better, so I’ve got stuff from the UK, from Canada, and from around the US hanging out in my freezer. Fortunately, there is plenty of space in there since since I don’t do much of that cooking thing.  One brain, nicely chilled. 😉





Dissonance

22 03 2017

   
There are some days when pieces of life seem egregiously out-of-tune with one another.

 Last night we received word that the daughter of dear friends had lost her extended battle with a particularly vicious disease. As I have sat in my home throughout this morning one of the pairs of cardinals that make their home in the trees along our property line has been vigorously, relentlessly singing. I thought to myself, they cannot know that today is not a day for song; their song does not fit with the anguish of the loss of a daughter, mother, sister, granddaughter, niece, cousin, aunt, and friend.  Today, they should be silent.

 As the morning has progressed, and the cardinals have continued to sing I began to wonder if perhaps their song is being sung across a wider expanse than our current, physical line of sight allows us to view. Perhaps there is, on this day, a hope that has been realized, a wholeness that has been reached, a peace that has been found, a life that has been finally and forever restored. Perhaps, in the unknown and indefinable space through which we move from this life into eternity the hand of Immanuel, God with us; our ever-present help in time of trouble reached out again, and was grasped with joy. Perhaps that is why the cardinals are singing today; perhaps they are in tune with an eternity that we cannot yet see.  Perhaps, on days like today, their song is the evidence of things not seen.

“Now faith is the substance of things hoped for, the evidence of things not seen.”  Hebrews 11:1