Lather, rinse, repeat

31 05 2018

The winding down of Brain Tumor Awareness Month just happens to coincide with the winding down of my injection cycle.  Every 12 weeks I head to my neurologist for a series of 33 injections of Botox spread across my scalp.  This was my week.  It does nothing for the tumor itself, but it does typically give me about 9 weeks of improvement to the secondary allodynia.  And yes, it is the same Botox that allows Hollywood types to walk around with an apparent 20 year age gap between their face and neck.  Under all that hair, I have the paralyzed, glassy-smooth scalp of a 25 year old;-). The downside is that I have to repeat the process until ???, the upside is that if this cycle didn’t help quite as much, there’s another one coming up in a few weeks.  

I am so very fortunate to have insurance that offsets the expense of this particular treatment option, not everyone does.  There are other therapies that I have been denied the opprtunity to try.  As the conversations around insurance, health-care, and pain management continue in the public and political spaces those of us living with the reality of chronic health issues find, with increasing frequency, that research and treatment options are being “managed” by individuals and organizations whose primary expertise is not medicine and whose motivating interests are power and/or profit; not an individual’s health.  I certainly don’t have any easy answers, but I and others like me need for our doctors, surgeons, therapists, and pharmacists to be allowed to bring their full expertise into partnership with us in working to optimize our quality of life.  I would encourage you to stay involved and invested in the conversation, it will impact all of us at some point in time.

My sincerest gratitude for each of you who has granted me a piece of your life to listen to my voice during this month.  I thank you for your ongoing well wishes, thoughtful comments, and continued prayers.  I am above all else, truly blessed.

Live Long & Prosper

26 05 2018

One of the surprising things about living with a brain tumor, is that you can indeed live with a brain tumor – hopefully for a really long time.  Before diagnosis my assumption (on the rare occassion when I even thought about it) was that if you had a brain tumor that puppy would have to come out, ASAP.  Often that is true, but not always.  It is a matter of managing risks and symptoms.  It’s not for nothing that the phase, “I need that like I need a hole in the head” is what you say about something you absolutely, positively don’t want, and having had one brain tumor removed, I would like nothing better than to never, ever have to do that again.  However, another discovery you make is that in spite of all the amazing and spectacular things that medical science continues to learn about our bodies, what we don’t know about our brains far outweighs what we do know.  The majority of treatment options are, for lack of a better term; trial and error.  There is absolutely no option that guarantees a return to pre-tumor “normal” and there are as many opinions on care plans as specialists recommending them.  So I’ve become my own researcher and specialist, and I’ve stopped expecting a single doctor to offer a singular magic fix.  I look for treatments that have the least negative impact on the rest of my body.  I look for options that I can layer, each one giving a degree of improvement in symptoms.  I have tried some weird things that I would have rolled my eyes at a few years ago; some have helped, some haven’t.  I’ve got oils, teas, tonics, herbs, tinctures, and powders from around the world.  I’ve been needled, jolted, rolled, frozen, heated, floated, and weighted down; some of it helps, a lot of it doesn’t.  I must confess though, my favorite weird remedy is frequent (daily during good spells and multiple times a day in rough patches) use of neuromodulation therapy.  It lets me reduce some of the heavier chemical pain remedies, and every time I see myself in the mirror wearing this particular device, I think I should be invited to make a cameo on Star Trek.🖖

The Lifters

23 05 2018


A number of years ago, well before my first brain tumor diagnosis my pastor at the time, Kevin Seymour, preached a sermon on the Leaners and the Lifters.  In relationships, some people are Leaners; they always need to be on the receiving end of the relational exchange.  We’ve all got some of those in our life.  But there are some others who are the Lifters.  When they are walking alongside you they make whatever load you’re carrying a little lighter.  You never actually ask them to be a Lifter, they just do it.  

One of the harder parts of living with a brain tumor, for me anyway, has been the recognition that I am a Leaner more often now – it bugs me; probably always will, but wow, am I grateful for all the Lifters that bless my life.  Kim is one of my Lifters.  She’s been doing my hair (along with the rest of my family’s) for a lot of years now.  Before I walk into her shop, she has already dimmed the lights.  I’ve never asked her to, she just somehow knew to do it when my recurrence decided to get snarky. I don’t know this for sure, but I’m guessing that cutting and coloring hair in the dark isn’t taught anywhere. She has a bottle of water for whenever I’ve forgotten to bring mine and I need to take some meds.  She stays booked full for weeks out, but is endlessly gracious if I’m too sick to drive and cancel on her.  If I’m not able to lean back into the wash sink she’ll do a dry and dirty haircut; I’m thinking that must cause some kind of internal heebie-jeebie response for her, but she acts like it’s no big deal.  She somehow knows if it needs to be a chatty or a quiet day.  There is really no way to quantify how much a Lifter helps a rough day – in the big things and the countless little adjustments and accomodations they quietly extend to make a day easier, but it does help so very much.

For all of you who are Lifters; thank you.  For everything you do and don’t do; say and don’t say, I am grateful.

Sometimes You Fake It a Little

21 05 2018

I’ve been fortunate to have been given the accomodation of video-remoting in to my classes.  So, when I’m in a bit of a rough spot, I can just add a necklace and pair of earrings to my jammies and slippers and no one will be any the wiser.  Technology is a very good thing:-). 

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.